Sharp Blue: Labyrinthitis comments, page 13

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I am having a major relapse, can't believe it after all those months of improvement. Back is the ear pain, head paid, neck pain, imbalance, dizzy to the point of feeling like I am going to faint. An hour ago I nearly called an ambulance because I came over hot, couldn't focus and felt that any minute I would hit the floor. It's frightening because I am on my own as the kid's have gone on holiday together. I have grabbed a blanket and am going to spend the evening and night propped up on the sofa as can't trust myself laying in bed as lying down makes me feel much much worse. When will this hell end and I can live a normal life again !!

Sorry to rant x


I'm so glad to have found this site. I won't bore you all with symptoms; we're all intimately familiar with those. Mine started in late July and I went for a week thinking I was dying before I finally went to my GP. My blood pressure was sky high--big surprise there, right?--and she put me on meds for that and chalked up my symptoms to that, too. I gotta tell ya, that wasn't encouraging at all. I have a strong family history of heart disease and I was sure I was on my way 'home'. I went to another local Dr. for the ordered blood tests a few days later, repeated my complaints, and she had them test for thyroid as well, and told me to see my dentist. This started after I ignored a toothache, so I really thought that might be the problem. As it turned out, my dentist was the most sympathetic and helpful of all of them. After the x rays and exam showed nothing, he said he knew someone who had Meniere's and what I had sounded kind of like that. I was still so dizzy when I went to see him that I didn't know if I'd be able to drive myself to his office, even though it was only about a mile away. I came home from his office in tears. I was thinking he was my last hope, and I sat down at the computer for lack of anything else to do, googled my symptoms, and BAM! The only, and I mean only, things that came up were sites for labs. Not stroke, not brain tumors, not mastoiditis, nothing but inner ear stuff.

You guys have saved my life. I was so so scared, so discouraged, and I came here and found all of you, echoing the exact same bizarro symptoms, and offering sites with exercises and ways to cope, and just lots of hope. I surely do thank you all and I add you all into my daily prayers for healing and comfort and peace. I've been lurking for about three months now, and I seem to be in the middle of a small relapse after a fairly steady improvement. I'm also having weird tingling in my hands and feet that feel like they're asleep. I hate that! I also find that, while I try to get through the day and at least pretend to be normal, I still have no "want to". I'm still feeling that detachment that I had earlier. So uncomfortable, so disconcerting. I think the last post on here is a couple months old, but I'm still going to come back for encouragement when I start second guessing and feeling down and scared. Next to Jesus, you guys have gotten me this far and I hope I can be a blessing and encouragement to others. Thanks!


Rant on, Shirley! We're in the same boat this weekend. My husband and brother in law went camping in a spot so remote there's not even cell service, and my youngest son is at a school function out of town until late. I've been sleeping on the couch since this started almost three months ago because I was tossing all night and kind of rocking myself to sleep to override the uncomfortable sensations, and I didn't want to disturb my husband's sleep. I also haven't been lying flat even now. It's not as 'spinny' as in the beginning, it's just not quite comfortable yet. I'm going all hot too, and my fingers and legs feel weird; asleep and twitchy. My head and ear and down my neck aches and burns. One good thing, though, is I'm actually sort of hungry. I'm going to make myself a lovely piece of fish in the micro, heat up some veg, make a cup of herbal tea--this from a coffee fiend!-- and find a quiet, lack of action movie to watch. Another wasted day, but this will pass! Take care of yourself this evening, relax and don't worry. I'm here on the couch, too, all hot and woozy right along with ya.


Shirley, I am so sorry! Those backsliding episodes are soooo depressing! I have had many of them over the past two years. Your symptoms do sound like migraine though. A migraine affecting the part of your head that connects to the inner ear can cause those symptoms, including ear pain. So it should pass really soon. Take care of yourself and hopefully you have things that have worked for you in the past to relax you when you are going through a difficult period.

Tina

Ellen I think what we have all learned on here is that the ENT docs and your GPs know absolutely zilch where labs is concerned. I was dismissed by my ENT doc as all my tests came back clear and he made me feel like I was making everything up. I guess on the outside I do look healthy but see me walk and I look like I've been on the vodka (oh I wish lol). Thank you so much for your kind words on facebook last night - they were much appreciated. I've woke up this morning feeling exactly the same but with the headache from hell. So today is going to be a day of rest, rest and more rest. Hope you are feeling much better this morning.

Tina - you might be right about the migraine. I haven't really suffered myself but it does run in my family as my mum was a major sufferer.

Hugs Shirley x

Shirley, I think that labs is a fairly stable condition and there will be some days you will feel better and days that you will feel a little worse, but it is kind of within the same range. If you get sudden attacks out of the blue that are not precipitated by movement, well then there is a good chance that a migraine component is also going on. I think you can have both, or even just migraine as it can mimic the symptoms of labyrinthitis. Most people still think of a migraine as just a bad headache, but it can have many different symptoms such as visual disturbance and dizziness. You may be able to control it with diet or you may need to add migraine-preventative meds. So I would go back to a doctor, but not an ENT, a neurologist who is familiar with migraines or better yet, a neurotologist, a balance disorder specialist.

Hi everyone,

Well I surviced my hen weekend & Alton Towers!!! I managed 2 rides...........the monorail shuttle & cable car. I was the official bag holder for the day but was glas I managed to keep up with everyone traipsing miles to each ride. We hired a lovely house in Staffs. 7 girlies all mucking in and cooking etc really nice even decided to drink!!! after the first woozy glass the affects didnt get any worse so had 3 more!!! champagne too. Feel off today but had only a few hrs sleep & a 3 1/2 hour journey. Took Stugeron Which really helped on the journey. To be honest felt so bad lately that I decided the alcohol couldnt make me much worse & it didnt. Really glad I went as last week I was suffering so much I thought about cancelling. The good thing is as i just want to fit in with everyone else I almost feel normal until I sit quietly then the swirlies start.

Shirley so sorry you have had such a bad weekend. The weather cant be helping much. i know that ambulance 'panic' feeling its horrible especially when you are alone. I had a strange turn in the dentists chair on Thurs. was only a consult & as the dentist was talking to me I came over all hot dizzy, sick & strange almost like a panic attack & all I kept thinking was 'its okay I am in a medical environment they will know what to do if I collapse'. Crazy the way it makes us feel. Just rest Shirley & take it easy. The only thing you can do. Rant all you like at least we all know exactly what you are talking about unlike the whole medical profession! Ellen, glad you found us hope it all helps you with your recovery :)

Love to everyone else

Claire


Poor you Shirley, like someone else said, at least we all can appreciate how bad you feel, as we've all been there and it's only when you start to feel better, that you realise how awful you've been feeling. I think you might be suffering migraine, it would be worth checking out. Claire, glad your weekend turned out well, you have given us all some hope - rides and alcohol! I have been given the name of my prescribed drugs - I get them tomorrow from the doctor, they are called Verapamil, not sure about them, have been reading into the side effects and am now quite worried, but I really want and need to feel well, so feel torn between taking the drugs and hopefully feel better, or not taking them and continue to feel awful! Love to you all Sue xx


Hi Everyone:)

I've been reading this message board and reading all your stories for 3 months now. It certainly does make me feel a lot better that I'm not the only person out there going through this - although I'm sorry any of us are.

I've been given a diagnosis of a variation of Meniere's disease by my neurologist, although I am on this site because I really don't relate to the symptoms of the people on the Meniere's sites. I'm sure the neurologist is probably right, but because my symptoms are labs symptoms (I haven't ever had acute spinning vertigo episodes or hearing loss) I feel a lot more in common with the people here.

This all started for me just over 4 months ago. I'm an Aussie but I had been living in Galway, Ireland for the last 4 years. I decided to move back to Australia this year, and on the night of my farewell in Galway, after I got home and was sitting in bed, my ears started ringing really loudly. I had been strangely over anxious for about two weeks leading up to it, and I had been having brief moments of slight dizzy spells for about six months before, but a doc had told me sometimes crystals come loose in your ear, and I put the anxiety down to the massive change in my life that was coming up. I was a bit anxious about the ear ringing but figured it was just from the loud pub, and went to sleep. The next day it was still going, and hasn't stopped since. It freaked me out, I had severe anxiety to the point my mother had to come to Ireland and help me pack and come back to Oz.

After about 5 weeks, I was back in Australia and I was feeling a lot calmer and had gotten used to the ringing, though I just didn't feel right. Then one night, BANG, I had a terrible headache at the back of my head and down my neck, everything went weird like I was tripping, my ears were hurting and really blocked, I had tingling down my arms to my fingers, I was dizzy, and the ground was moving like I was on a boat. I went to the hospital and they just told me I was having a panic attack. I WAS NOT having a panic attack, but they wouldn't believe me. All those symptoms have stayed for the last 3 months, and even got worse for a while. My eyes also went blurry after a few weeks and now for the first time, I have to wear glasses!!

I went to see a psychiatrist (who had treated me 10 years earlier with anxiety). The psychiatrist said it was NOT anxiety, and sent me to a neurologist. The neurologist examined me, could find nothing wrong, and said it was anxiety. He called the psychiatrist in front of me, and my psychiatrist insisted he send me for tests. That day he sent me for a CT scan, and within a few more days I had an MRI, blood tests, hearing tests, and an ENG and caloric tests. I was so lucky I was back in Australia because it was all free, including the doctors fees. I know I would have had to wait forever in Ireland and probably pay through the nose for it, so at least that was a blessing. The ENG/caloric tests showed a slight problem with my left inner ear, even though I have stabbing pains in both ears, ringing in both ears, and they both feel very blocked. I then went to an ENT specialist, who said there was nothing wrong with me! My hearing is perfect, and he said the ENG variation is too slight to mean anything!! I was SOOO upset I started crying in his office.! He told me there was nothing he could do for me and sent me out the door.BASTARD.

I then received a phone call from the neurologist who had sent me for the tests, and he apologised and said he now believed there was something wrong with me! He said it was slight, but he believed, based on my symptoms, it was a problem. Thank God! He put me on Serc, but after a month it did nothing. Still dizzy, still in pain, still weird and disconnected. Then he put me on an anti migraine drug called Sibelium. It isn't registered in Australia and he had to get special government permission to give it to me. I have absolutely no side effects so far, and I finally think I'm starting to get better. The dizziness isn't as bad as it was the first month, and the permanent headache is gone. Things are still a bit weird, like looking through a camera instead of it being real, but not as much, and not all the time. I actually thought the dizziness was gone two weeks ago, but since then I've had a setback and I'm back bobbing on that dizzy ocean. For those of you who haven't tried this drug for fear of the side effects, I just want to let you know, I generally feel EVERYTHING. I'm only 46kg and drugs effect me really strongly, but this one has been fine.I don't know if it's really working, or if Im just naturally healing myself, but the setback happened when I hadn't taken it for 4 days, so I actually think it is helping. I don't suffer from migraines normally, so I'm not sure why this drug is working, but the neuro said that it was good for people who had a variation of Meniere's (which is what he thinks this might be, although he said it can't really be known unless once I get better, it comes back again).

Anyway, sorry for boring you with my story, I just thought maybe people could ask their doctors about Sibelium if they wanted. (I know it is registered and widely used in Europe and Asia). @Shirley, I understand how you feel. I've never been more scared, panicked, and miserable about my life and my future ever. I find it difficult just getting through each hour sometimes. I'm single, and unemployed and back at home trying to start a new life, and now I feel like my life is over and I'll be stuck dizzy and spaced out alone in my parents house for the rest of my life! Don't worry, you're not alone!!:)

Ish x


By the way, I've been thinking of something that would be of use to everyone with any dizziness, no matter what the cause. If we now have cochlear implants for deafness, why can't we have vestibular implants for dizziness? I'm sure it would be technologically possible to create a chip that senses motion and spatial location and can transmit that information like a cochlear implant does (not that I know how a cochlear implant works). But it surely can't be harder than any other recent technological feats?! And there would be a hell of a lot of people willing to get one!

@Richard, judging from your bio on the home page, you seem like you would be entirely capable of such a feat!! Go on Richard, invent a cure for us!;) I'd do it myself but I'm a writer, not a physicist/engineer/computer wizz...

Ish

[Unfortunately, I’m useless with electronics and biology, two things that seem like they might be quite important to the project… — Rich]


Hi everyone

Just a couple of questions that I'm sure you'll be able to help me out with:

a) How long should you take Stemetil for? b) Can the heavy/ burning ears syndrome be treated?

My ears have been out of sorts since I came down with labs almost 7 weeks ago and I really don't know what to do (or take) to make the heaviness go away.....it's also accompanied at times with a numbness in my face, particularly around the nose area.

Hope you're all feeling much better and thinking and empathising with you all!

Love,

Bridie xx

Ish, Welcome to the site I was like you & read lots of posts before I actually felt brave enough to add my bit. Your story is very interesting & you seem to have had a sympathetic neurologist (eventually). I think every single one of us has been fobbed off at some time with 'anxiety' it is part of the condition but hardly surprising considering we are literally banging our dizzy heads against a brick wall. I really hope you are on the mend & feel like you can get your life back on track. Being able to lead a normal life as possible is very important in the coping & getting over this horrible condition its very hard sometimes to stay positive but we really musnt let it beat us!!!

Bridie I was told that if I could stay off the serc/stemetil then it would help the brain to compensate as the use of too much anti dizzy can slow down the healing process. i took beta histine for about a month then just stopped taking anything except travel sickness tablets for car journeys. I have wierd feelings in my head & face including tightness heaviness in the bridge of my nose. Its all part of how it affects us & I wish I knew something to tell you that would help but I've had this almost 9 months & I'm still searching!

Claire

A good description of Migraine Associated Vertigo in this online technical textbook. Important to show to the disbelieving doctors http://books.google.com/books?id=sGhzMnst1j8C&printsec=frontcover&dq=ballenger's+otorhinolaryngology+head+and+neck+surgery&source=bl&ots=hAEUjUrpj6&sig=zsIg8WOhNqWkcrUU1WY1DeU-cbY&hl=en&ei=3IaqTL2dAor0swPZ3PzDAw&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCkQ6AEwAw#v=onepage&q&f=false

There are also good descriptions of Meniere's, BPPV, and VN. The MAV one is on page 318.

Hi all,

Back after a most wonderful weeks holiday! We were really lucky with the weather, the cottage we stayed in was fab and had views to die for. The thumbnail attached shows the view from our bedroom which had a lovely balcony. Getting up in the morning and sitting out on the balcony with a cup of tea first thing was the best tonic ever. I just didn't want to come back. I felt not too bad - I'm am quite sure the change of scenery and the fact you have other things to think of, do take your mind off how you feel. That said, of course my time was not symptom free - will that day ever arrive.

Can I say hi and welcome to all the new folk - I absolutely can empathise with you all.

Sue - will be glad to hear how you get on with the Verapamil (and you too Ish with the Sibelium). I'm to go back and see the neuro in November who will no doubt want to try another migraine med. I'm still not totally convinced about the migraine stuff. Yes, I am a migraine sufferer, but there is no way that what I have been through since last June is totally migraine. Sure, it doesn't help. Also, since I have been taking the magnesium supplements, that has helped a little and my head doesn't feel so tight. But, here I am back from holiday and have had the migraine from hell since yesterday. Glad it didn't occur whilst on holiday though - even had a glass of bubbly to celebrate our wedding anniversary! We also did tons of hill walking so the exercise thing is also key.

Anyway, sorry Shirley/Claire to hear you are feeling yuk. It is so unfair, just when you get a little glimmer of hope. Claire - I'm with you on to hell with it all and just go ahead and enjoy - you feel rubbish anyway! Glad you had a good week-end.

Whilst, I'm still lightheaded, I am not nearly as dizzy, but it is just the ear stuff, tightness in the head, headaches. For those suffering sweats and nausea - I had that big time - after 15 months it is loads better and now I get a little sweat, usually in the night - so hold on in there.

Bridie - I have tried everything for the same symptoms you describe. Thinking I have had the worst of ear infections, but the ENT person I saw the other week said it was all down to nerve damage in the ear. Hopefully, nerve damage eventually repairs itself. Try not to take Stemetil unless you really have to. It stops any compensation of balance. Keep strong.

Can't believe we're on Page 13 - oh well - could be lucky for all of us - you never know!!

Lovely to hear from you all. Love & hugs, Gloria xx

This little poem I found on holiday and want to send it's sentiments to everyone.

When things go wrong as they sometimes will, When the road you're trudging seems all up hill, When the funds are low and the debts are high, You want to smile but have to sigh, When things are pressing you down a bit, Rest, if you must, but DON'T you quit.

Life is strange with its twists and turns, As everyone of us sometimes learns, And many a failure turns about when he might have won had he stuck it out.

Don't give up though the pace seems slow, You may succeed with another blow. Success is failure turned inside out, The silver tint of the clouds of doubt.

You can never tell how close you are, It may be near when it seems so far, So stick to the fight when you're hardest hit,

It's when things seem worse that you must NOT QUIT.

Love, Gloria xx


Hi folks

Thanks Claire and Gloria for your advice - I kind of thought the ears thing was nerve damage as my GP checked my ears a few days ago and didnt find any infection. It's so reassuring to have this site and to know that others are going through the same and feel your pain!

Gloria, thanks for posting the poem - I think it epitomizes what we're all going through! I'm glad you had a lovely holiday.

Dear Ish, I really feel for you, at one point a few months ago, I felt exactly the same way! Now I can actually go into a supermarket without feeling like I'm about to keel over and I even managed a concert last weekend!I'm thinking of you.

Will sign off here and best wishes to all.

Bridie xx


Yeah, today after doing way too much yesterday I feel yuck again. I keep thinking back to the total disability of the first couple of weeks, though, and see how very far from that I remain. Keep thinking that, all; we're not where we will be, but we're not where we were! Gloria, I've made a list to go with your poem. It's called " All the Things I Like About Inner Ear Disorders"...

...Um, yeah. All done. :D

Hi everyone

Welcome to all the newbies! I too can really empathise with all you are going through and the struggle with the doctors. I did not realise at the time that this is pretty standard to experience next to no help from the medical profession with this condition. I thought it was just me and I came away from nearly every appointment in tears convinced I would be dizzy forever and never have any answers. Getting some kind of diagnosis from a neurologist after 9 months and finding this site are the main things that have kept me going and reassured me that things improve.

Ish I really understand what you are feeling. I felt like my life was over for a long time but now due to the healing of time, acceptance of my condition, a semi-diagnosis and improvement (albeit slow) in my condition has given me hope. I have been lucky enough to be able to stop work and take some time to recover and I now find that whilst still suffering symtpoms I can live my life day to day and largely I am happy. I do get frustrated at times and scared occasionally and I am limited to things I can do, things I can do with a struggle and things I still would not attempt. Hang in there, one thing this has taught me is that life goes on, things change and you will not stay the same forever...

Gloria so glad you had a good holiday. Did you say your god daughters wedding is coming up soon. Are you feeling confident about it? Thanks for the poem, it brought a tear to my eye!

I have been reasonable this week, I seem to go through a week or two of feeling a bit better then another few weeks of feeling worse again. It's like a cycle but I dont know what influences it. My neck is starting to hurt again after a week of relief, why i still dont really know.

Tina thanks for posting all the medical info, you know more than the doctors? Did you say you have had this 2 years? Have you improved and how do you manage your day? Are you ever symptom free?

Everyone else Claire, Shirely, Ellen, Bridie hope you are seeing better days?

Take care Jemma xx

Jemma, I think that we as patients have an advantage over the doctors in that we have the time and the motivation to focus and search out info on our particular ailment. They have to be current on many different fields and so may not be reading up specifically on balance disorders. Unfortunately, rather than admitting that they haven't looked at a medical book describing balance disorders since the 1980s, they blame our symptoms on anxiety! LOL The link I sent was of a very recent textbook that probably most practicing doctors have not read.

I have had this condition for two years; it began intermittently with what looked like BPPV and then became a full blown attack in January 2009. It has slowly improved since that attack, but I am still very far from normal. The only time I feel normal is when I am sitting and haven't moved very much. Though I can also get really bad false motion while sitting. It depends on what I have done already that day.

I think what hinders my compensation is that I have a migraine overlay. While I have the constant off feeling, I can suddenly get worse due to rapid air pressure changes or today I got worse because I was reading aloud for about 45 minutes to students. (I work at a high school) The tracking increased my blurred vision, dizziness, slightly headachey, heavy headedness and feeling of motion sickness that just stayed with me for the rest of the day. It's kind of the same feeling I would get pre-labs, if I were a passenger on a long trip with windy roads. But worse.

How I manage my day, is to go to work and try to ignore it as best I can. Distraction seems to be the key, but some days I just come home and sob, because I am so tired of feeling like this. I am lucky that my job is very close to my house, only 9 blocks away.

When I am more dizzy, my neck gets very uncomfortable, because of trying to hold my head still. It's also from tension, being angry that I have this condition and maybe some of it is also from the migraine phenomenon going on in my head.

Hi all,

Too boring to say how I'm feeling, same old same old. Just a quick one today has anyone tried or thought about trying power balance bands (google it) just wondered if i should waste �29.95 on a possible (but unlikely) cure??

Neurologist on Wednesday next week, not holding out too much hope!

Claire

[That’s not even an unlikely cure, just a way to extract money from desperate or gullible people — Rich]


Jemma, Sandie and others:

I keep noticing you all talking about the "waxing and waning" of your symptoms which include dizziness, spaciness, brain fog, SORE NECK, ear fullness, etc, etc, etc.

OK..broken record I know...but these are classic LYME symptoms. Lyme can cause Labyrinthitis (latest research from John Hopkins University.)

Please please consider finding an LLMD (Lyme Literate MD) in your area to get a PROPER lyme test or at least to rule it out and tell me to buzz off! ;) I have now helped 5 people get properly diagnosed when they were told (some for years) that they had Labyrinthitis, Meniere's, Fibromyalgia, and / or Chronic Fatigue. Lyme is in all 50 states and throughout Europe.

Most lyme patients really have lyme plus 1-3 other "co-infections" (usually Bartonella and Babesia). I have lyme and "Bart" but also suspect "Babs". Symptoms for all 3 are below. Check off how many you have. If it is more than 10, then strongly suspect lyme & co is at the ROOT of your Labs / other problems. 3 weeks of antibiotics won't cure this. You need agressive, long term treatment. I'm in my 5th month and am almost 100%. I've met others who had to treat for 1-2 years, but they beat it!

I had more than 50 symptoms at my worst (around the time I posted here for the first time.) Today I have 3-4! See how many you have!!

Watch the trailer for "Under our Skin" at www.underourskin.com or on youtube (more trailers there.) It explains the Lyme epidemic / controversy in the USA and EU.

Symptoms are:

Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol 39. Symptoms wax / wane / flare in approximate 4 week cycles

Bartonella Symptoms:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

Babesia Symptoms

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)

Thanks Rich I think you are definitely right I will save the 29.95 & treat myself to something nice instead that will make me feel much better!!! :)

Hi all

Claire good luck at the neurologist. I got a few answers when I saw one so fingers crossed you will too!

Just wanted to respond to Brad and the Lyme disease theory and btw glad you are improving Brad.

I am not sure if we have any LLMDs in the UK - has anyone uk based on here had the tests? I don't think it is as prevalent here as it is in the USA however I do know it exists as I remember someone I vaguely knew having it a while ago. I have looked into it again and whilst I do fit some of the symptoms on the list, there are so many on there it could relate to many conditions. Also I dont have enough of the possible symptoms to make me think it is Lyme. The main symptoms I had/have are:

- initial severe anxiety as the dizziness started - anxiety turned into depression and weepiness which subsided within the first year - constant off balance feelings - fatigue - more recently episodes of a painful, achey neck - crunching sounds in ears, mainly the left and occasional fullness, noises and fluid feelings

Whilst these do appear to the list for Lyme they are also all symptoms of vestibular disorder.

The other thing is that I have had two blood tests at the GP and was told there was no sign of infections, no abnormality in the blood count/cells/antibodies and no sign of inflammation or arthritis which according to wikipedia is one of the main things the doctors would look for to diagnose Lyme. I also never had a rash which is another key thing they look for and I am not really an outdoorsy person although I accept that may not matter.

The final thing I wonder is that if I did have Lyme and it had remained untreated all this time (nearly 18 months now) would I not be getting worse? Overall I would say I have slowly improved so would this not go against it being Lyme which I thought is progressive unless treated with antibiotics...

Brad please don't think I am dismissing all you say because I am not. I just wanted to put my queries out there. If the testing was freely available in the UK I would have it to rule out Lyme because with this you never feel 100% sure what is wrong so thanks for opening our minds to the possibilities.

Take care everyone.

Jemma xxx


Hi Jemma:

Thanks for the note. Here is what I have learned.

-Some people have lyme in their system for years and have no symptoms. It "comes out" during a time of stress or when the body is worn down.

-Just because you've been like this for 18 months and haven't gotten worse doesn't mean anything. Some people plateau with lyme. Your body could be keeping what you have at bay.

-Re symptoms..yes, they are very non-specific and could be related to many things. That is the difficulty with properly diagnosing lyme & co as the diagnostic tests miss 70% of the lyme cases (only 30% sensitivity) and therefore people are told they have stress, it is 'in their head', or else they have labs, meneires, etc.

-The fact that you have dizziness, anxiety, fatiue, ACHY NECK (the big clue) and also ear noises confirm that. I never had joint pain, bells palsy or a big rash as the textbooks say you have to have.

You are correct...you may not have it. But what if you do? Wouldn't you want to at least rule it out? 18 months of uncompensated labs IS NOT NORMAL.

Here is what I recommend if you want to rule it out. -Find an LLMD (Lyme Literate MD) in your area, ideally one trained by ILADS. There are a few in the UK as lyme is prevalent there (contrary to what many think.) You can find an LLMD by contacting www.ilads.org, www.lymediseaseassocation.org, or www.lymenet.org (flash discussions - seeking a doctor.)

-Have this LLMD give you an IGENEX Western Blot for lyme. Also get tested for co-infections (Bart, Babs). Only the Igenex test is accurate enough. It is 70% sensitive (but still can miss 30%.) DO NOT get the "standard" lyme test offered by the UK Health system..they are totally worthless.

-Get a Brain Spect scan and CD-57 test (from Labcorp). These two tests can help confirm lyme. Spects are usually abnormal with disseminated lyme (mine was.) CD-57's are usually low. This test measures the level of "Natural Killer Cells" in your blood stream / immune system. Normal is >200. Bad lyme is

-DO NOT DO STERIODS or else you will go down hill. They suppress the immune system and let the bugs take over.

-If you don't test positive, or don't want to do tests, why not try a trial (2-3 months) of strong antibiotics? Problem is you need an LLMD to prescribe the right combination (to attack all 3 forms of lyme) and the right dosage (most regular doctors give too low a dose.) I was on 400mg of Doxycycline and 1000mg of Flagyl at the beginning.

If you do all this and you still are unwell, then you probably don't have it. I know..it sounds like a lot. Perhaps just start with the Igenex test. (www.igenex.com) They can send you a free test kit and you can ship them a sample for testing. You just need to get your blood drawn and spun.

If you don't have it, at least you will be sure and you can focus on labs. If you do have it, then you can focus on killing the beast.

Or you can just ignore me. I don't think you are being insensitive :) I just am trying to spread the word as I have met folks who have been miserable...some for 5, 10, or even 20 YEARS!!! because they were told it was stress, or given some bogus diagnosis like "Fibromyalgia" or "Chronic Fatigue Syndrome" when lyme was really at the root of it.

Again...I feel I had labs too. Bue the root / cause of my Labs was lyme.

I'm always eager to answer any questions.


I was on a site called Donna's Garden for an entirely different reason and I got to browsing, Look what I found as uses for St. John's Wort:

"Depression, mild to moderate, or melancholia (moodiness). St. John's Wort is a nerve food; for nerve pain from peripheral neuropathies or secondary to trauma, spinal or head injuries. It regenerates nerves. Profoundly antiviral. Externally, it is a wound herb, especially good for burns."

I happen to have some in my cabinet. I can't see any harm, so I'm gonna try it. Anybody else used this?

hi all,

Brad - so pleased you are coming out of this and found the reason why you were unwell. For me, I think I said some months back, when I went to see a private neurologist, the first thing he did was a very comprehensive, and expensive blood test for a whole bunch of things ( 2 pages of lists of various tests) including Lyme - all negative. In a way, I wish something more positive did come out of it that could be identified precisely and there were tablets like antibiotics to cure it. With this it is a waiting game whilst it goes through a whole raft of symptoms. As Jemma said, looking back from the start I can see progression, but it is progression with horrible symptoms all along the way - not much respite. You think you are over one stage and then something else takes its place. So frustrating.

Jemma - thank you for your response - my god-daughter's wedding is in 3 Saturdays time! Like you I have had a reasonable week or so. Back from holiday this week and feel not good again. So as you say, time to slide down the old snake again! Migraine from hell - been 3 days now! So, really hope this clears in time for all the madness of the wedding week-end including the wedding and party afterwards - can I face all that disco music?!! I used to be the first up on the dance floor for a bit of a boogie!

Claire - wish you well with the neurologist. Will be very interested to hear what advice you are given or medication to take. Do you get many headaches or odd head pains with yours? I'm sure my neurologist will put me back on Amitriptyline. Whilst i feel I could do with something to dampen all this down - I think I have come this far without, should I succumb now?

Tina - I admire you greatly for carrying on with this and working. Teaching is stressful at the best of times. Are you not tempted to try any medication at all or are you just hoping it will give up the ghost one day? Have you always been a migraine sufferer anyway and what pain medication do you take when it is bad?

Shirley - how are you? Hope you are coming out of your relapse. Send hugs oxox.

Sue/Ish - how is the medication going? As you may gather I think I may have to relent and try something. Hope your days are brighter.

S - if you are back from your holiday - I hope it did you good and you feel a little better - maybe not so swirly headed.

To everyone else and my other regular pals Sandie and Gary - hope you are doing OK.

Love, Gloria xx

Hi Gloria, No, I am not yet ready to take any migraine meds, though some days I am tempted. I just diagnosed myself with MAV and the neurologist agreed, so I am just guessing that I have VN and migraine as an addition. I never had classic migraines before, and never needed to take a pain med. Even now I don't. With this condition I have now, I get head pressure and headaches, but the headaches are very mild and I barely notice them. They were somewhat worse earlier on in my labs journey, but maybe it's my diet and magnesium that helps with that. My only tip-off to the possibility of a migraine gene was that my two daughters had menstrual migraines once and noticing that I had a tendency towards motion sickness and I had gotten BPPV twice before. BPPV and motion sickness are more common in people with migraine tendencies. And I also read recently that people can develop migraines from the stress of having labs!

As for Brad's post, I am also glad that you found something that is working for you. I too believe that a lot of disorders like CFS etc. with their unpleasant symptoms might actually be your body fighting off a fungus or bacteria that conventional western medicine does not yet have the capability to test for.

Hello Everyone,

Gloria nice to have you back glad you had a good holiday & managed to make the most of it (its all we can do). Sorry you are thinking of going back to amitriptyline, you must be suffering so if its what you think you need then its worth a try maybe set yourself a time goal & if you havent improved by that time then you really have nothing to lose. I am going to fight my neurologist if he even suggests this for me as I didnt get on well with them but everyone is different. i just think I am super sensitive to any meds & always seem to get all the side affects!! Good luck with your wedding. i have one in 2 saturdays timelooking forward to it but have already worked out it is near my 'time of the month'- positive thinking!!! :)

Jemma I will let you know how it goes with the neurosurgeon although I have already decided it may be pointless. Hope you are okay :)

Met an old friend at the gym the other day who has been suffering with Meneieres for 2 years. lots of similarities in our condition & was nice to speak to someone in person about our symptoms. Even saw her again today & had a conversation together on the treadmil before I knew it i had burned 150 calories- result!!!

I have decided to get back my positive attituds as its been hard the last few months. I will be doing my VRT 2x a day every day & continue with my exercising. I will be beat this thing & I will feel 100% again..........Please feel free to remind me of that again the next time I am having a moan on here.

Hope all the other posters on here (so many to mention now) are seeing some improvements. I, like Gloria & Jemma said am slowly better than when this all started 9+ months ago & have to remind myself of that on a daily basis

Keep smiling :)

Claire xx

Hi Claire

I just wanted to ask you, are you seeing an NHS or private neurologist and did you ask to be referred by your GP. I recall you saying a while ago that your caloric test showed up a problem with one of your ears? Did they diagnose VN?

Jemma xx

Hi Jemma, Its NHS I had the caloric tests etc privately & he just said thet there was 18% damage to my right ear? Is that VN? My GP referred me without me asking because I mentioned the shaky legs I'd been getting mainly on the left side. I think he wanted to make sure there was nothing else going on. Claire x


Dear all, I thought I'd reply to some of your posts. I'm 3 days into my new tablets "verapamil". It's a bit early to tell yet whether they're working or not, although I had the worst headache yesterday. It worries me when I look too much into what they are actually supposed to be used for and all the side effects -well there are quite a few including dizziness - just what I need! I do agree with you, Claire, exercise does help, but sometimes it's the last thing you want to do. I'm still trying to get the doctor to refer me for VRT, but she wasn't sure if she needed to refer me or whether I could just turn up at physio or she did mention a handout which I didn't manage to get! - oh doctors, they really are something else. I looked at the Lymes info but decided that I probably haven't got that, as I have had months symptom free, just going on for longer this time - unfortunately! Shirley, I hope you are feeling better, you are like me - very up and down and like every one else it's so upsetting and depressing when we have a set back, but isn't it great when you actually stop and think "I haven't felt dizzy today". I am still having my Bowen Technique and today had a Hoppi candle - very relaxing and also feel really good so far, whether its going to work on a long term basis, who knows, but I've felt good so far today! Best wishes to you all, Sue xxx

Claire, yeh I thought I remembered you saying about the caloric showing something but you read so many peoples' stories you get mixed up. It's interesting your left side has been affected because I have always felt that my right side has been more affected, leg, eye etc but I am sure the problem is with my left ear. I reckon that is because I recall reading that the ear passages its messages to the opposite side of the brain. This would kind of explain it. Perhaps the neurologist will do an MRI brain scan or some blood tests if you push them just to rule out anything else...

This last week my ears have been really crackly again. Sort of like fluid behind the eardrum. They were like this last year. I dont know whether it is the time of year or some sort of mild infection. I dont know but of course you worry it could be going worse again. Fingers crossed it isnt! xx

Hi all,

Just got our computer back up again. It crashed totally. Thank goodness we had everything backed up. Anyway, my hubby who clearly understands these things a lot lot more than I do has got it to work again. Phew!

After the migraine from hell at the beginning of the week, felt a bit better on Friday and the week-end, although we had friends over for dinner on Saturday (7) I was rushing around like a headless chicken cooking etc. Not the thing to do really. Anyway, this week have really got to chill and keep calm - wedding week next week! So will not want to make anything erupt big time!

My neck and shoulder muscles are really tight and sore though - Jemma you experiencing the same? My ear was playing up too for the last few weeks as well! I read the same about the opposite side receives the messages from the brain which is usually opposite to the affected side (does that make sense?). It is my left ear but I had all the tingling and stuff in my right leg. Jemma - how are you coping with your days now? Are you bored at home yet? I am, but just don't know what to commit myself to as I don't think I could take on the responsibility of agreeing to work even a few hours a week still! I''m still so up and down.

I have been doing some power walking everyday and yesterday was beautiful here so we drove and did some rambling hill walks - both of us can't walk today, (such sore muscles) but exercise does seem to help this condition.

Sue - do keep on letting us know how those tablets are helping or not and any any effects you have with them - I'd be really grateful for some info, but glad you are feeling brighter - long may it last.

Claire - go girl! I have to do the same and lecture myself to be more proactive and positive! It is soooooo difficult at times especially during a bad blip. What new VRT have you got to do or are they same as you posted before? I am totally bored with mine and not sure if they have an impact any more. Is your wedding you are going to this Saturday? You enjoyed your Alton Towers week-end - take the old Stugeron or anything to help you enjoy your day. I shall be doing that for sure. Good luck Wednesday and of course let us know how things go. xx

Gary - if you're looking in - how is college going and are you managing OK?

Hope everyone is on an upward trend.

Take care, Love, Gloria xx


Hi guys

It's good to see that you are all trying to stay positive. I really up and down at the minute. I find myself crying most days; I just can't help it! Am I ever going to feel normal and well again? :-(

Anyway 2 weeks ago I went to see my new consultant and I'm glad I did. He seemed more knowledgeable then any of the others I have seen. He actually said that VN is just a symptom. It means nerve damage but what has caused that needs to be resolved. He ordered another MRI and a hearing test. I get the results on Saturday when I see him again. He was actually disgusted that I have paid to see several other consultants and not one has ordered an hearing test!! He also carried out a test that instantly ruled out bbpv, which is what the neurologist diagnosed, and laughed when I said the other neuro diagnosed MAV and perscribed topamax! He was saying that we have these sacs behind our ears and if they are damaged fluid gets inti them and causes dizziness, vertigo etc. He said this is why women have more problems around the time of the month because we retain more fluid in our bodies. He said a hormone imbalance can also cause this. Anyway he is experimenting and as taken me off birth control. I don't like to temp fate but I think he may be onto something!! The other thing he wants to rule out is meneires. I thought this only happened in episodes though? Not 24/7? I'm going to discuss this more with him on Saturday. It may lead to another dead end but I'm trying to be hopeful :-)

one thing I have been experiencing lately is a numb feeling down my right side when my balance is off. Does anyone else get this?

Love to you all

Ash xx


I think I might have labrynthitis. My symptoms started about six weeks ago. Started with dizziness and headaches. I sometimes feel pressure in my ear (usually the right one). My dizziness is more one the right side of my head and I experience dizziness over right eye and eye strain. Is it normal to experience eye strain (I do not have the rapid eye movement that some people have talked about - just dizziness and strain). I have almost fainted twice. Had a CT scan done of head and it was normal. Will be having and ENG done soon. These are very scarey symptoms and sometimes I cannot even function. It's all I want to do is lay down. Can anyone out there let me know if they have similar symptoms (especially the eye strain symptom which I find weird). Thanks in advance.

Hi All

Thought I'd continue with the positive as I know it really helps to read good as well as bad. I have been feeling much improved in the last week. Almost how I was back in the summer when I thought it was all getting better. I have definitely had a bad 3 months so really have noticed the improvement more because of the blip. I have upped the anti on the VRT & Exercise. Managing 2-3 miles on the treadmill now plus other gym stuff. I am doing my VRT 2x aday & have for a week now. As I am writing this I feel the old swirly feeling but I am only really getting it now later in the evening. Which means I am more or less symptom free for most of the day. I realise I could be setting myself up for a fall by sharing this with you but I know we all need to hear about the positive stuff too!! Fingers crossed I may be climbing up a ladder again :)

Gloria, The wedding is Sat 23rd so really hope I can enjoy that day (all day). Well done with the walking, must be working as you look lovely on your profile photo. i read the other day that regular exercise can add ten years to your life so I am in it for the long haul.

Jemma hope your okay I also get thet wierd full feeling in the ears its horrible & makes me feel worse & headachey. Hope you are improving a little :)

Ash I am so glad you have seen someone with a little more knowledge. Its good to get all the tests to at least rule things out. I often wonder about menieres but I dont get the drop attacks of vertigo that goes with it & my hearing test was okay. I have had wierd feelings of numbnes, pins & needles always on my left side thats why my doctor has now referred me to the neurologist but I just think its all part of this horrible condition, try not to worry & mention it to the consultant. I also suffer more before & during my period. The funny thing is my doctor suggested I go on the pill (I'm 40!!) & yours is taking you off!!! I'll let you know how my neurology appt goes.

Anonymous Sorry you have had to go in search but glad you found us :) It sounds to me very much like Labs symptoms. One of my main symptoms at the start (10 months ago) was eye strain & it lasted a while sometimes was really hard to focus properly. It was all very scary at the beginning & like everyone here I struggled for the first few months, didnt go out,lost weight huge anxiety but once you know what it is its just a case of coping as well as you can & trying to keep active as it really helps even though you dont feel like it. I had MRI, caloric & ENG tests just showed up damage to the right side (although my left feels wierder)& was given VRT which I think helps although dificult to know for sure. Anyway try to stay positive & you have come to the right place for answers

Tina, Shirley,Gary, Sue, Ellen Bridie & everyone else hope you are all okay

Claire xx


Tina, Shirley, Gary, Sue, Ellen,

Thanks so much for responding. It's nice to hear from people who understand. I think my husband thinks I'm just making it all up. I wish that were true. My symptoms get better at night which makes me want to stay up all night and enjoy feeling normal for a while. Will keep you posted on the outcome. Thanks so much!!

Hi everyone

Claire so glad you are improving it must be such a relief!

Ash i was interested in what your consultant said about the fluid sacs behind the ears. I have always felt there has been some sort of fluid thing with me because my ears feel like there is fluid behind the drum and crackle. Also my MRI scan showed fluid traces in the mastoid air cells. Keep us posted on your results.

Gloria in answer to your questions, my neck seems to flare up for a few weeks, then it settles a bit then goes worse again for no apparent reason. I seem to have phases of headaches then they go away for a while. I cope with my days and I am relieved not to have to go to work because like you i just cannot cope with the demands of work day after day. I find that I need to take regular rest to maintain some energy levels otherwise i just crash. When i was working I had to lie down all evening to recover and by the next morning i was still exhausted. Then it started all over again. Is fatigue a big part of this for you Gloria?

Ellen, Ish, Shirley and everyone else, hope you are ok?

Sandie if you are there, are you feeling prepared for your son's wedding?

Take care xxx

Hello

Thought I'd just update you all on my trip to the neurologist today. Very nice chap first of all which helped, quite understanding too. Anyway he thinks it is MAV (migraine induced vertigo). Alot of my symptoms are worse when i am close to my period. He suggested this to be quite common with my age group & as i have always been a headachey kind of person who suffered full on debilitating migraines as a 'hormonal' teenager. It seems the only medication available is amitriptyline, anti epilepsy, beta blockers & lots of other scary side effect drugs! Think I would rather cope with the dizzy/headaches :(. Makes me wonder where the inner ear connection is too, its all a bit confusing. ENT says one thing Neuro says another. Anyway he is going to access my MRI which was done privately so will let me know if anything shows up or if he thinks I may need another scan. So there you go another confusing slightly frustrating day in the life of a Labs/MAV/BPPV???? sufferer.

Claire x


Lovely to hear from you all again, this site has proved much more useful in the months that I've been looking in on it, than the last 4 1/2 years of health care professionals. I'm still waiting to hear if and when I can start VRT; everything seems to take so long to organise here in cornwall. Gloria, you asked if the new tablets were going well - sorry to say no miracles yet, still have bad days, but did feel worse last week as I had 2 days tablet-free, due to change over of drugs. Ash, I too get very full crackly ears so was really interested to hear what you were told recently by the neurologist, it sounds very logical and I will be interested to hear the outcome, you never know it might be the hope of a cure we've all been waiting for. Anonymous, I can quite sympathise with you. I also think people think I'm making this up sometimes, or they glibbly say "oh yes I had dizziness once - it lasted for about a week"! Jenna, I too get an achy neck and shoulder, and have been told in the past it's the way I hold myself when I'm off-balance. I've thought for a long time there's a connection between the off-balance and the neck pain. Claire, you sound like you had a very bewildering time at your latest appointment. I sometimes come away from these appointments wondering what I've been told and what it all actually means, then I feel cross with myself as I don't think I've asked the right questions or got any answers. That said, we should be experts soon! Well that's my rant over, looking forward to a "dizzy"-free time, for all of us. Sue x

Hi all,

Without our main computer now - it has totally given up the ghost so hubby and I are fighting over this lap-top!!

Not feeling good - was so dizzy the other couple of nights. Well, explanation is I have a horrible kidney/urine infection - really feel yuk. At least I know why I feel worse again. Thankfully, it is this week an not next. My god-daughter's wedding os on the 23rd like your wedding you are going to Claire. I'm getting myself a bit worked up just hoping and praying I will be OK.

Claire - I knew that is what you would be told. Unless people have something that is glaringly different, the process of a diagnosis seems to go along the same lines for all of us. Not got over labs within a certain time frame, and you have been, as you say, headachy - then it is MAV with medication as the only solution! If we didn't have labs we would all be carrying on as we were, suffering the odd headaches or migraine but otherwise felt normal. I don't understand at all. I have a follow up appointment up at Prof Luxon's old clinic in November - it will be try another medication I know! Claire - do you just take pain killers for your headaches? Are you doing any different VRT exercises or are they the same as before?

Jemma - I tried to fight the tiredness and that is what I have been told makes my headaches worse. So I have to build in a rest period each day. There is no way I could cope with work though. It is enough to get through each day even though I don't do that much. I do worry about everything though which I know doesn't help. I just want a glimpse of a longer, normal period. Really fed up with not being able to make future plans and look forward to them without wondering if I am going to be OK or not. AAARRRGH! Sorry to off -load but feeling miserable today.

Sue - are you having any noticeable side effects with your tablets? I know the previous meds I have been put on like Topamax, Cymbalta (anti-epilepsy) I took just 1 tablet and felt terrible so stopped them. Hope the meds work and you feel really good soon.

Hope everyone else is coping or even having easier times.

Sandie - good luck for your son's wedding - thinking of you. Let us know how it all goes.

Back under the duvet for me today!

Lots of love, Gloria xx

Hi

Sue, you described my appt exactlty - bewildering!! I did come away & within a few hours of soaking up the information I thought why didnt I mention 'this', or I should have said 'that' I think we are the experts you are so right.

Gloria, my VRT is more or less the same as before nothing new really. The neurologist also said that if VRT hadnt helped within a month then he thought it probably wouldnt!! Sorry for those still waiting for a referral. I am going to persevere with it though I have a VRT appt next Thurs so will see what they say. Probably not what I wanted to hear but what does he know anyway?? Topamax was one of the drugs he mentioned, my face must have been a give away because as he mentioned all the drug possibilities he looked at me & said " you're not keen on the idea of taking medication are you?" err no in a word. I have managed more or less the last 10 months without & as I am making very small progress I dont want to interfere with anything. Or am I just being a woossy who doesnt want to risk side affects? The only things I take are Nurofen but I try & wait til it is really bad before giving in to them. Yem my friends wedding is the 23rd October so really hoping to feel okay on the day (& night) we are staying over at the hotel where the reception is so at least I can slope off if I need to. Went to the gym toady was hard work as I also booked myself an appt with the beauty therapist there & had my eyelashes tinted first, didnt think about the fact that I would have to lay down flat on my back with my eyes closed for 15 mins. Not easy for a Labs/MAV/BPPV sufferer!!!! So a bit swirly on the treadmill :)

Anyway bye for now Hope you enjoy your day under the duvet Gloria x

Claire x

Claire, you neurologist visit does sound confusing. I am not sure how he decided you have MAV as I thought that happened more in episodes of vertigo and not constant off balance. Also if you showed up a vestibular weakness on the caloric test doesn't this suggest labs/VN rather than MAV - unless MAV causes damage to the vestibular nerve, im not sure????...

Also his comments about VRT seem misleading. My neurolgist suggested I do VRT after 9 months. The Emma/Ilia labs website says the following about VRT...

"Now, before we go into how VRT works, we feel it important to mention that VRT is not popular with all health professionals. Emma experienced a situation at her 6 month mark, where she asked her GP for referral to VRT, only to get the reply “We will only refer you if you cannot function at all. Anyway, the exercises don’t help”. This was obviously upsetting and is bad practice. In reality, you have a right to demand VRT if you are at or beyond the 2 month mark. The longer you leave it, the longer VRT actually takes to work. It was about 1 and a half years before Emma got to VRT and about 3 years for Ilia. Getting there earlier could have quickened both of our recoveries. The fact is VRT does work (we will give you some figures later) for most so stick to your guns and if you feel you need VRT – then demand it."

Sue - the neck thing is all part of this I am sure. All the muscles and nerves are connected and as the brain and inner ear are so close to the neck and it is so important to balance, it is really affected when something goes wrong.

Gloria - sorry you are having a rough patch. I am plodding along much the same. Don't see any clear signs of improvement at the moment and it is frustrating. I just need that to keep the hope alive.

Tina forgot to mention you last time. Hope you are ok?

All those going to weddings in the next week or so, good luck and hope you feel better than you expect.

Take care all xxx


Jemma, Claire and everyone, MIgraine Associated Vertigo, can be chronic 24/7 or come in attacks. It can appear with having had labs or just by itself or with BPPV. It will interfere with compensation if you are recovering from an injury to your inner ear. So the MAV may have to be treated before the VRT can work. The VRT can only work if the brain has a fairly steady baseline to work from. If there are a lot of fluctuations due to a migraine process, then VRT will not do much of anything. Once the fluctuations have been resolved the VRT can work, even years later!

Jemma

The more i think about my appt yesterday the more confused I am :( I chose to ignore his comments about VRT as for the last 2 weeks I have been religously doing it 2x a day & I am feelin a little better. I always thought the visit would be a waste of time & I now think I may have been right. Oh well back to the plodding on doing it my way. I am going to continue with the VRT as its better than taking tablets I dont want.

I have come to a conclusion. I think we all find a way of coping with this, we have our own theories on what does & doesnt work for us & it may take us a while to get there but we get there in the end. The lovely thing is we can all help each other along the way an awful lot more than any appt with any 'specialist'. So to all you fellow plodders, thanks for being there & lots of love & luck

Claire


Hi to Everyone.

It's been a while since I posted. I returned to work full time since 9/7/2010. With this illness, a fulltime job, an active 3 year-old, and a 3 month-old, it gets frustrating and depressing at times. I'm trying to do as much normal as possible. When I'm working, I feel as if I might be on the road to recovery...but when I'm home, I feel all sorts of odd symptoms. I guess it's because at home I don't have much to concentrate on like at work..who knows. As for my ear infection, I'm starting to feel heart palpitations again.

It's been over two months since I have all these dizziness, headaches. I'm starting to wonder if I'll ever be able to travel far from home, to live life like I used to.

For those of you that have had better days, keep on having more of those days and hope you guys are on your roads to recovery.

kia


Claire

I'm beginning to think all neurologists put our symptoms down to migraine. I don't think they know what else to say!

I'm holding onto the hope that this new ENT consultant I have who specialises in Neurotology will be able to help me.

Up until last night I have almost been dizzy free since coming off the pill two weeks ago. Dpn't get me wrong my balance is still a little off when I walk but I am hoping this will correct itself with time.

Then last night the swirly head returned but I am trying to stay positive. I can't expect it to correct itself in 2 weeks. What I did notice was that I experienced horrific ear pain last night and today so maybe the sacs behind me ears have filled with fluid again. I see my consultant again tomorrow so hopefully he will be able to provide me with a few more answers.

One thing I wanted to ask you all was if any of you went through a period of experiencing hot flushes? Every so often my back feels on fire but it isn't to touch and it makes me feel really yucky. It could be hormone related as he has totally messed up my cycle taking me off the pill and I didn't have it before then.

Anyway I will let you all know any information I find out tomorrow.

Take care all

Ash xx

Hi All,

Still living in a wibbly wobbly world, this relapse has taken me way way back but Claire you are giving me hope that it will pass just like yours has done hopefully. I have been to my doc and he says I need to see the neuro physio as I am suffering terrible neck and ear pain. It's the same as when this all started although I think this time around I am coping better and I am not suffering from the anxiety that I had before. I did manage to get out on Wednesday and went into town with my daughter but the lighting in the stores was just too much for me and I ended up coming home. It made me feel a bit of a failure so ended up in tears when I got home. I seem to manage ok in the home but outside is a different matter. I also had to stop going to the gym as I am just too unbalanced and the car journey there would do me no favours at all.

I have been reading and keeping up with everyone. I know some of us are not doing too good. It's so hard to do but I guess we must try and stay positive that this will pass one day.

Love to all Shirley xx

Shirley,

Sorry its all gone horribly wrong for you lately I know my 3 month relapse knocked me a bit & I still dont know if its gone completely still having swirly moments but I am definitely better than I was & I am pre menstrual so usually a bad time for me. I find that I am not too bad in the day & only really swirly in the evenings now which I can cope with. I am at the gym almost every day now so hope to keep it up, mind you all the weight I lost before has crept back up but oh well you cant have everything!! I really hope this is just 'another' blip for you & you will come out of it again soon.

Kia I always feel worse when i am at home & when I finally sit down at the end of the day is when it hits me. My anxiety has subsided now but was awful for the first 4 months or so. Once I realised exactly what was going on & got used to all the wierd symptoms I learned to ignore it all & have stopped timing my heart (which became an obsession for a while) I really hope that like me after a few months you will learn to cope with it all & find a way of getting through each day & hopefully your symptoms may ease off a little, I know how hard it is with children to look after too, I am lucky mine are 10 & 12 so a little more self sufficient than your two little ones, good luck thinking of you x

Ash I got hot flushes right at the start of all this puit it down to the infection or virus that caused it all. Yours could be hormone linked though. I hope you have a bit more luck with your 'specialist' & look forward to hearing what he/she has to say.

Love to everyone else

Claire x


Hi Everyone,

I just wanted to say Hi, and let you know that I'm feeling a lot better. I've been back on my anti migraine medication 2 and a half weeks now (after a 4 day break in which all my symptoms crept back) and I feel a LOT less dizzy. Besides the blocked ears, and the ringing, and the fatigue, and occasional ear pain, I almost feel normal! There is still slight movement, and I feel it when I'm in bed at night more, but it is gradually but noticeably less each day I'm on the tablets. I'm now starting to really fear coming off them ever, in case everything comes back.For the whole nearly four months now, I have been on a strict no salt diet, haven't had any caffeine or alcohol, have been eating loads of fruit and vegies, taking multivitamins, drinking lots of water, and trying to walk at least 2 to 3 km every day or second day, so maaaybe that is also starting to make a difference, Who knows?

The drug I'm on is Sibelium (generic name Flunarizine). It is an anti migraine, calcium channel blocker, and I have absolutely no side effects. I heard Topomax ect has strong side effects, but this is a different type of drug. I was scared before I took it because I have to be really pushed to even take Nurofen, and I have strong anxiety just on antihistamines. But it honestly has been fine, and the strongest common side effects it is known to have is drowsiness or increase in appetite, which I thought I could handle. I haven't been diagnosed as MAV but the neurologist said he has been prescribing this for 20 years when people have 24/7 dizziness/vertigo and it works really well. So if anyone is game, they should look into it.

David - I was really worried about Lyme disease for quite a while, but no one in Australia knows anything about it because we don't have it here. Unfortunately there is a chance I could have picked it up in Europe. (I have been living there for the last 4 years) There are no LLMDs in Australia, but I am going to book an appointment with a pathologist I read about who specialises in tick borne diseases, just so I can rule it out. Thanks for your information on it, it has been very helpful to me.

I hope everyone is starting to feel better soon, relapses really suck and I still really fear them. It's been nearly 4 months for me now, and it's so hard to imagine a normal life again sometimes, so I really feel for all of you and remember you in my prayers. We'll all get through this eventually and it will just be something to look back on and be thankful we're not there anymore.

Ish x

Hi everyone,

Great to hear updates from Ash, Kia and Ish.

I'm very grateful to those taking medication and letting us know how they are reacting. Ish - I am going to speak to my doctor about Sibelium, because as Tina has indicated, if there is a MAV element to labs, you have to have meds to treat the migraines. I have been stubborn and not want to go on medication, because as you say, what happens when you stop?! But my VRT therapist did say that medication is the only way forward with MAV. I've got so far down the line now, and totally fed up with it al, I will try anything.

Ash - whilst your hot flushes may be to do with you coming off the pill, it is also a side effect of this monster. I used to be drenched in sweat. That has eased off quite a bit and only feel flushed occasionally now, which usually indicates to me that I'm going to have not such a good day!

Claire - you are so right. I think there is a point of realising that all the professionals we see have the same script! You end up working out what helps you and hoping the light at the end of the tunnel is forever nearer. It will be interesting to see how your time of the month affects you this time and whether it was as bad as the last. If it's OK, then maybe an indication you are on the up! So hope so.

Shirley - so great to hear from you too. I had been thinking of you especially as last time you posted you were not at all good. I suppose if there are any redeeming features of this thing and that is when you relapse, you don't panic quite so much because you have experienced it all before! But isn't it the relapses that knock your confidence big time, because you just think it is never going to get better. Hold on in there girl, you got through before and there are better days ahead. As Claire said, thank goodness we all have each other on here for support.

I was thinking the other day of the Euromillions of £113 million pounds still not claimed and dreamt what I could do with just a fraction of that! Alas, still don't think having that sort of money would find a cure! Might make my surroundings a bit more comfortable though and having the problem of how to spend it may help take my mind off how I feel LOL!!!!

Jemma/Tina/Sue and all - love to you and thinking of you.

Take care and pray you all have better week-ends. Love, Gloria xx


Hi again,

Sorry @Brad my comment was directed at you! I have no idea why I called you David, only I'm getting confused over all the posts from way back. LOL!

@Gloria - I'll be really interested to hear what your doc says about the Sibelium and how it goes for you.

Cheers, Ish

Gloria, you might want to try the migraine preventative diet to start. Caffeine, for example is a huge trigger, so cutting out coffee, chocolate, and tea are VERY important.

But besides that, thanks for your sweet message. I am sorry I don't thoroughly read everyone's comments, because the scrolling up and down is just too much and I am on the computer a lot at work. But I too wish everyone on here and all the dizzies of the world relief from this affliction. I feel part of my mission to that end, is to inform people that labyrinthitis may be only partly responsible for one's continuing symptoms and that a process that presents with dizziness and visual disturbances, even if it is 24/7 may also be a migraine as well.

While migraines tend to run in families, I think anyone is capable of developing migraines particularly after a head injury, the stress of an inner ear injury, or hormonal fluctuations especially as women reach their late 30s and early 40s and their progesterone levels begin to go down in comparison with their estrogen levels. So I would also recommend, if you are a woman, getting your hormone levels checked.

It could be an inflammatory condition causing the migraines arising from eating foods that one is allergic to , so that should probably be checked out as well.

Anyway, I feel like we need to keep looking and researching because our doctors don't have the time.


I hope everybody is doing well this weekend. I've been doing lots better, but it has been really gradual, and I still feel only about 85% all the time. I have been outside walking a bit which seems to be a good form of VRT. I am trying to cut back on coffee, not much change otherwise in diet because I already feel I eat pretty well. The big issue for me lately has been the tingly limbs. I went for a week with my arms and hands, legs and feet feeling as though they were asleep all the time! It drove me crazy! Couple that with the lingering lack of desire to do anything-not lack of energy, but just not caring, no creative urge. Everything seemed like way too much effort. Finally the tingling has been gradually lessening to where it's now just in the background along with the swirlies. I drove myself to town yesterday for the first time since all this started, about 30 miles, and went to have lunch with a friend, did some small shopping, stuff like that. By the time I started home, I was kinda woozy. I told my husband it was like driving drunk! Each day, though, I've felt pretty yuck right at waking up, then better through the day. I am definitely recovering, and you guys will, too. I keep all of you in my prayers daily; hang on! Ellen

Anyone got any ideas on how I can get to sleep and stay asleep. Everytime I lay down, even with 3 pillows, I get that spinny, passing out feeling. Quite scary.

Also, this time round my eyes are just so sensitive, both to light and movement. Just want to keep them closed all the time. I feel like they are constantly streaming. I walked up to the postbox this morning with sunglasses on even though the sun wasn't out .. must have looked a right sight lol.

Ellen I am really trying to hang on !!

Shirley Can't believe how much you seem to be suffering at the moment and there was a time not that long back that it looked like you might be turning a corner! That lying down dizzy I had at the start. Thank goodness don't get it that bad now at night. I just remember sleeping on 3 pillows too I dont know what else to suggest apart from sleepng in a reclining chair until the 'blip' passes. Poor you I really feel for you. When will all this crap end for us all?? Sounds like it could be migraine related too??

Ellen Glad you seem to be slightly improved for now. I have had all sorts of wierd tingles & sensations since this all started, every now & then it creeps up on me again just to remind me of it! It's funny you feel yuk in the mornings I am at my best in the mornings so thats my Gym time. I haven't had caffeine since this all started not sure it helps but too scared to reintroduce it til it all goes away.

I had a spa day today at Center Parcs with some friends. After about 2 hours started to get a really bad headache (also time of month). It's been with me all day now can't get rid & really swirly headed shaky legs AAAARRRRGGGHHH Just when I thought things might be improving!! :(

One funny thing though I went to some friends on Sat night with Hubby & the girls, got home at 2am after drinking almost a whole bottle of wine & danced to some old 80's tunes, I actually felt the best I had for ages the alcohol made me 'not' dizzy. What's that all about?? Unfortunately felt 'dizzy' in the morning but had a good night & forgot everything so hoping for much the same this Saturday for my friends' wedding. i am not saying go out & get drunk but what's the harm in trying?? :)

Claire

Just read all that back & realised I think my space bar may be faulty!!! Hope it hasnt made you dizzy reading it :()

[I edited your comment to put the missing spaces in — Rich]


Dear all, After having a good few days, I've had the worst headache today. Although, diagnosed with MAV, I don't usually get the full blown headache it's more like a hangover usually. After getting quite excited about my VRT, it seems that the doctor at the surgery had never heard of VRT, so 5 days later and this time another trip to see another doctor - a locum and I'm being refered back to ENT. Is it me or does everyone have this pillar to post situation? Claire you seem to be feeling better, I hope it continues. Wine as a cure, now that is a remedy I would try, I'm afraid no alcohol for me it's not recomended with Verapamil! I hope you continue to feel better. Thanks Tina for all your usefull advice, I will try to cut my caffeine intake. Gloria have you started any new medication yet? You sound like me in that you would try anything just to feel better, we must be due a "normal" time soon. Ellen I know what you mean by feeling woozy and drunk, I too feel worse in the morning, but usually get better as the day goes by. Shirley do you get BPPV only that gives you the spinning sensation? I sometimes describe it like I have those joke glasses on that bounce in and out. It's so hard to focus that every day tasks like reading, writing are so difficult. I hope that you feel better soon. To everyone else suffering at the moment I hope you find something to ease your symptoms and if you find a cure post it on here ! Love Sue x

Hi everyone,

Just 3 days to go before my god-daughter's wedding. Having battled through a yuk week with urine infection which gave me more headaches, I just sobbed my heart out yesterday and pleaded with someone to give me a break for the next few days at least. I just want to remember how much I enjoyed my god-daughter's wedding, not how much I couldn't enjoy it because I felt so rotten. Anyway, feel a bit better today - so who knows maybe someone answered my prayers.

Got a copy of the letter the NHS ENT guy sent to my GP. I saw him just before we went to Cornwall. He states that it appears I have had Vestibular Neuritis, and although surprised (!!!!) I haven't recovered by now, wants me to go for more comprehensive vestibular testing at another hospital and have intensive VRT!!!!!!!!!!! This is because I only had the Caloric and ENG testing done before.

Claire - I so hope you have a lovely day on Saturday and if I was more brave would take a leaf out of your book and go for the bottle of wine!! Sounds like you had fun and much deserved I say.

Tina - am pretty much doing the migraine diet. Don't have caffeine, don't drink alcohol (can't!) and no chocolate, cheese or citrus fruit with me. Eat fresh, good quality food in the main and try not to eat a lot of wheat based foods - hardly any in fact. So dull!! I forgot to ask you Tina - do you still get dizzy, swimmy headed still?

Shirley - you really are going through it again. What I think is so unfair, is that after a brief good patch and you have a relapse, the relapse takes weeks and weeks to improve. Why can't it be the other way around. Few days bad and weeks and weeks of good! I have had terrible sleep issues since this thing. I bought the Boots version (cheaper and exactly same ingredients) of Nytol. Take 2 a bit before you go to bed - for me it has worked a treat and I do feel a lot more relaxed when I wake up and without that drugged feeling. Try them. I also have what they call photosensitivity. Can't take bright light. Eyes really hurt. As I wear glasses anyway - I bought a pair of those 'overglasses' sunglasses. They are quite big, but at least big sunglasses are the fashion at the moment - so I don't look that odd!!! I have to wear them even when the sun isn't shining but it is quite bright. Because they are closed at the top and sides, they really do prevent the bright light affecting you. I don't care what I look like because they have helped. You will come out of this Shirley. It has happened before and it will again. Love and hugs to you oxox.

Ellen - so glad you are feeling a lot better - I hope it lasts and lasts.

Ish - I have to go and see my GP about Sibelium. Apparently it is not licensed or marketed here in the UK, but I think some headaches specialists seem to have it. I may have to pay. Anyway, will keep you updated. Sue who posted on here earlier. She takes Verapamil which is a calcium channel blocker and in the same group as Sibelium, but it appears to have different side effects. That is the nearest equivalent in the UK. Sue - how is it going?

Well, may not be able to post til after the wedding party have left next Monday. Fingers crossed!!

Take care everyone. Hugs, Gloria xx


Hey everybody welcome to Page 13, I’m at 11 months still swaying like hell 24/7 yet I find this funny im not dizzy at all I don’t feel swirly headed as i did for months at the start of this thing my head is actually very clear and feels as I did before this beast affected me. I’m still not quite sure what I’m suffering from whether its MDDS( I haven’t been on a cruise ship in years or boat) or damage caused by my true spinning attack I had 11 months ago which precipitated all the horrible symptoms i have experienced, of which most have resolved themselves. I’m always questioning can LABS cause MDDS cause I worry as I’ve heard horror stories about that condition and swaying lasting for years, I’m assuming it’s not but i still wonder when these horrible movement sensations will evaporate. Anyways Going to see one of the top specialists in the world in two months Dr. Halymagyi hopefully he will be some help because I’ve had some terrible problems with the medical community and this condition constantly telling me its anxiety related, I’m not going to listen to some psychologist sit there and tell me I’m not swaying if they could just feel how I feel for a day and sit there and tell me it’s all a product of their mind, sigh.

I’m an extremely driven person and don’t tend to malinger around these problems I work 4 days a week, 4 days of intense weight lifting and 3 days of University but this condition has taken a toll over my life, it just shows how debilitating vertigo can be. This has been the worst year f my life and if this condition can greatly improve and my health can return back to normal ill be so grateful i think that I’ll be happy for the rest of my life despite what happens to me.

I might actually give in during my uni holidays in 3 weeks and start taking Klonapin I’ve head it can help eliminate the swaying a low dosage but I’ll talk to my new specialist about whether it will help as I’ve heard on dizzy boards it can help in certain people.

Currently im taking 7500 mg of gingko , st,johns wort and claratyne a decongestant which I’m trailing that apparently can help people with inner ear problems by reducing the excess fluid in your ear.

Anyways that’s enough of my rant I hope everyone out there continues to improve, i look foward to the day im still again i havent felt still since November 16th 2009

Hi everyone

Well today was my birthday and I was worried I was not going to enjoy it at all because I have been so tired this last week ( I wonder if I have some kind of mild virus) however today was actually not bad. I remembered my birthday last year and I am kind of hopeful that i have improved and am not as dizzy as i was then and at least i did not cry like last year. I managed to go out for lunch and my sister visited me so overall it has been quite good. I still feel 'off' in my head, my neck started to get tight after a while and i am a bit tired now but i am not going to complain too much.

As I said I have felt so tired and its hard to know what to do. Just keep going i guess. Sounds like everyone is a bit rough at the moment.

Gloria I will be thinking about you on saturday and do hope you manage to cope ok and even enjoy it. I am interested in these comprehensive ENG tests you mention. None of my ENTs or doctors wanted to see me again so i wouldnt know where to go if i was to go back. I have just been left to get on with it! I wonder if the further tests would show anything because i reckon we have both damaged the same part of our ear/s.

Claire I am sure you are improving because you said you often just feel dizzy later in the day and I remember Melissa on this site saying the same thing and then she recovered fully not that long after.

Shirley so sorry to hear of your relapse. The spinning must be awful. Keep remembering that you have been there before and you will get through it again.

S keep pushing the doctors. I don't know you but I am certain from what you say that you do not have this feeling due to anxiety. You know yourself how you feel and if you believe it is inner ear then it is very likely to be that. I dont think anxiety would cause that kind of permanent swaying feeling. Anxiety comes and goes, surges and then eases a bit, changes in different situations. The doctors need to understand that and not fob you off.

Everyone else, hope you doing ok?....

Love Jemma xxx

Hello everyone,

Thanks Rich for editing my previous post definitely a faulty space bar!! Also while I'm in thanking mode, thanks for keeping this thread going for so long bet you never imagined it to go for this long when you charted your own symptoms at the beginning!!!

Just a little update from me. Went to see the VRT therapist today & feel like its the first time someone has been totally honest & understanding. I'm afraid after 3 days with a severe headache & getting to the end of my teather I cried in her office!!! She has decided that although VRT is helpful & can take months to start working she feels that due to the intensity of it & the fact I was charting it 2x a day & recording how I was feeling it maybe hasnt been helpful to me. So new strategy, less intense VRT, no recording it so as not to focus on the negative & try to walk a little each day. As I am always so much worse as soon as I stop & sit down in the evening she has encouraged me to take time out in the day to listen to my relaxation CD use relaxing techniques and not keep going at 100 miles an hour, wgich is basically what I do to take my mind off it & ignore it. She was basically honest & said it will be a long haul. Due to the fact I was told at the beginning it should only last a few weeks that has been in the back of my mind. She said to take each moment as it comes not focus on the future & to believe that it will go in the end. This was much more like a good counselling session for me & I hope that I can take it all on board.She said she sees many people with the same problem & there is no quick fix for long term sufferers but it 'wiil' go. In a strange way although I am still nursing the headache from hell (with swirly head) I feel a little more hopeful today :) Anyway I have a wedding this weekend & am really looking forward to it & I will not even think about how I will feel on Saturday I will just go with the flow.

Off to Cardiff with the family for 4 nights next week so really looking forward to that

Love to you all & enjoy your wedding too Gloria.

Happy Birthday Jemma xx

Claire xx


Hi everyone

So I went back to my consultant last Saturday and the 2nd MRI was clear. The sacs that fill with fluid were clear and my hearing test was normal so he doesn't think I have typical meneires disease. He still thinks it may be hormone related so I am having my hormone levels checked. If these come back clear then he was honest and said he is not sure what it is. He said sometimes things happen to the brain/ inner ear and no cause is ever found. After all that I'm a thousand pound worse off and nowhere closer to finding a cause/ cure!! I was glad that he ruled out a few of the 4 different diagnoses I have had though!! He said I don't have bbpv and mav was highly unlikely. Apparently if you have dizziness 24/7 that is migraine related then the blood vessel activity would show up on the MRI scan. I think my first ent was right when he diagnosed vn. All my symptoms relate to it and my blood work at the time showed that my body was fighting a virus.

Anyway he has referred me for vrt therapy. He didn't seem confident that it would work but he thought it would help me with my confidence. I must say I'm not sure if I should do it or not. I do notice improvements and would vrt knock me back?

My consultant said that I should try and ease back into work and driving but I don't know how I'm going to cope! I can barely cope with a day of walking and doing a bit of shopping. I'm an auditor so I work long hours and have to travel all over the country. What am I going to do?!

Claire do you find that you also get queasy when driving and not only as a passenger? The doc said he thinks this symptom is in my head cos I felt bad at the start of the illness.

Also does anyone get a headache in the ear area and behind the eye? It is just a dull ache sometimes but I think it maybe to do with my neck because this really hurts at the moment. The headache doesn't get worse with movement and it comes and goes. My scalp also sometimes hurts to touch; has anyone else experienced this?

Gloria/ Claire - I hope you enjoy the wedding this weekend and get through the day symptom free

To everyone else - hope you are all well

Ashley xx


Ashley, Your weird head pains and the sore spots on your scalp are signs of migraine. I get them too. You could have had VN which kicked in the migraine stuff.

Happy Birthday Jemma!

Gloria-- You asked me about my symptoms. I am still swimmy headed and dizzy. On really bad days I have a sense of false motion that makes me feel like my insides from head to toe are going 60 miles an hour, then it is really hard to focus. I also wanted to say that my daughter got married a few months ago and I was even able to dance a bit at her wedding. Somehow the adrenaline rush helps our vestibular systems cope better, so you should do just fine!

I just commented, but I didn't realize I was signed out, so it will come up anonymous, but it is me!


Hi tina

my consultant didn't seem to think it was migraine. I have no history of it and don't get the other symptoms. He said migraine pain is so severe that you can't move and I can go about my normal day with it. As a mentioned on my previous post he said mav is basically saying you have a 24/7 type of migraine and this would show on an MRI.

Don't get me wrong I'm not totally dismissing what you say. I really hope I haven't developed a migraine as friends have them and I know what bad times they go through. I've had a rough enough ride already, I don't want to be a migraine sufferer too! Lol!

Ashley xx

Hi Ashley, I can understand your feelings. If you are satisfied with your progress and treatment, then forget about Migraine Associated Vertigo. But if you feel dissatisfied at some point, then that might be something else to explore. There's more and more good info on the web about the condition. Timothy Hain's Dizziness and Balance website is a good start. Also it's nice to know that 40% of people with dizziness from migraines can improve with diet alone.


Hi All,

I've had a really bad day today. I've been a bit dizzier (or swirly headed as u all seem to call it:), but instead of soldiering through it's really knocked me today. I'm just so sick and tired of feeling like this and really do despair over whether life is ever gonna be worth living again. The dizziness isn't as bad as it was a month ago or anything, but my tolerance has just hit bottom I think. Especially when the meds seemed to be working and improving things, and then the improvement stopped and I've just stayed with this general slight swirly headed floaty thing that won't stop. AAARGH! I'm going to go back to the neuro and see about upping the dose, which he did suggest was possible. I'm on a low dose anyway so I'll see how it goes. I know I shouldn't complain because most of you have been suffering this a lot longer than me. The four month mark is just really trying me for some reason.

S - I was following your posts from way back because I had the same type of swaying/rocking sensation the whole time. It died down after 2 months but I still have it slightly, especially when I lie down at night. It is never totally gone. I really feel for you. Believe me, it is NOT anxiety. I was fobbed off with that a lot too. For me, it's the swirly head that I really really hate. Are you in Sydney? I'm interested also in seeing Dr Halmagyi.

Gloria - Sibelium is not registered here in Australia either. My neuro obtained special permission from Canberra for me to take it, so I have to pay for it too. It's only about $20 though so it's worth it for me. It is registered in mainland Europe and Middle East and Asia. Don't know why not here too. Hope you find something that works for you anyway.

Tina - thanks for the info on MAV, mine really sounds it could be that, or related in some way. I think there are a number of possible causes for what we are all going through and the symptoms are all so similar it really seems hit and miss if we ever get the correct diagnosis. I just hope medical science catches up really soon and helps us all. Cheers, Ish


Hi to Everyone

For those of you that are long time sufferers, do you sometime feel as if you're energetic then the next day, you're all down, tired, and feel sick to your stomach? Sometimes I would feel good for 3-4 days and able to eat, then the nest day or two, I would have extreme loss of appetite and feel crappy. Some nights I can sleep then other nights I wake up every 1-2 hours with a fast heart beat. It's been almost 3 months for me now. I hope my better days are stretching longer.

For everyone of you, please please have more better days!!!

Kia

I remember in the earlier months having trouble sleeping and waking up with a rapid heartbeat. Also the ebbs and flows in terms of nausea, appetite and energy levels are familiar. It's all part of the process of your body adapting to having a vestibular disorder, but it does get better.

Hi all,

Well, I survived!!! Although I am now SO exhausted I could sleep for a month, the wedding went off without a hitch and was lovely. I was OK. I wouldn't say too great, but took Stugeron, ibuprofen and got through it. I was fine on the Thursday before and thought if this feeling lasts then everything will be great. Then the day before, Friday, migraine and headaches abound, dizzy and so off. You just have to accept it - I took Stugeron and painkillers - didn't care at this point, normally over the last 15 months I have tried not to take anything if I can help it, but when you must you must. The ceremony was beautiful and I danced the night away. I found concentrating on making conversation with people testing and had to disappear for a few minutes to gather myself. Had a few sips of champagne but stayed off alcohol. Had a good time nonetheless.

Also, whilst not feeling at all brilliant, I haven't reacted to the chaos of the last week at all badly, which I honestly thought I would do - other than the tiredness. (Maybe it is waiting for me in the wings!!)

Jemma - I am so sorry I forgot your birthday. I cannot believe we were commiserating a year ago at the same time. Heartfelt wishes go to you and glad you had a good day. As you say, we can compare how we were last year at this time and know we have improved. It is slow, but at least we can see progress. This time next year Jemma, you never know, we could be celebrating feeling NORMAL !!!

Claire - I read your post about your visit to the VRT therapist which mirrored my last visit exactly - the relaxation cd's, less intense VRT, but at least she was very honest with you and even though you know it is the long haul, you know it will go. I think we all accept it being slow slow slow, but just want to know normal life will happen again. Have a fab time in Cardiff.

Ash - VRT helps. I personally don't think it cures, but if you are having a spell of bad dizziness, then doing some VRT does help. Doing repeated head movements as in VRT gets the brain back on track and helps to stabilise you. When beginning, you may feel it is making you worse, but it will help and after a few days you should notice some difference. As for the ear pain and pain behind the ear and eye and sore head - have had all that as well as the neck pain. It is part and parcel for some. Interestingly, it seems to be a symptom for those who experience bad headaches/migraines with this. That doesn't necessarily mean you have MAV. As a migraine sufferer they have labelled me with that, although the last ENT consultant I saw said it was VN and I'm convinced it is that too. As you have read, progress is slow, but you do improve and all these niggling side effects do get less. As for work, well I cannot and could not cope with work. However, now, after 15 months of this, if I had too I suppose I would consider something part time, but as an auditor that is a hectic job - are you self-employed or do you work for a company? I would not make any hasty decision just yet Ash. In my experience I think you need at least a year, but for some they have no option than to return to work. If you can, leave it for a bit. Doctors encourage normality so you do not dwell on what is going to take a bit of a while to go, but whilst I get bored, at least I don't have the pressure of knowing I must go into work. Anyway, keep strong.

Ish - sorry you are having a rougher patch. Alas, 4 months is an early stage for some of us. I think we pin our hopes on medicines or supplements thinking they maybe a cure. Having bought and tried every alternative remedy and medication, I think it is a false hope. However, what you may find because you are taking Sibelium for instance which should be lessening your headaches and therefore should give the brain more chance to recover, but I think you still experience the 'blips' that happen along the way. Have you progressed with trying to get to see this doctor you have in Australia and will you have to pay. Do you know how good he is? Anyway, fill us in when you find out more. Have better days Ish.

Kia - hi - all of what you write is and has been the norm for many of us on here. I spoke to someone the other day who has menieres. Whilst not pleasant, she just gets now and again some dizziness, but it only lasts for seconds. She couldn't understand when I told her of the other millions of symptoms that I and most of us on here suffer as well other than just a bit swirly headed. I would be grateful for just that I think! You will have better times.

S - good to hear from you. This Dr. Halmagyi - sounds good? How did you get a referral to see him? Can't wait until your appointment to see if he can shed any useful info to help us poor souls here in the UK! Many of us have spent pounds to see top specialists but seem to have come away with not very much really. If nothing S, your determination will get you through. Keep strong too.

Well, if I write any more I will have used up all of page 13!!!!

Love and hugs to everyone.

Gloria xx

Hi everyone

Gloria so glad you made it through the wedding ok, I was thinking of you. Did you find when you try to talk to people you feel 'off' in your head and start to feel swirly and are constantly checking yourself mentally as to how you feel? That is how I am in those situations. I also often find my eyes glazing over and I find it hard to focus and I tire so quickly.

I have finished my Chronic fatigue course now. I do have another acupuncture apt at the end of November but I guess unless I go back to the doctors then that is it as far as medical help is concerned. I have thought about paying for private VRT - is it worth it??

Ash feel for you and the work situation. Your job sounds hard. I found I could not continue with my desk job although I think the fatigue has hit me harder than most.

As for the rapid heartbeat thing, I had that really badly at first and still get it now sometimes.

Today I had a horrible feeling when I was stationary in my car at the petrol station. I really felt like suddenly the car was rolling backwards, I pressed hard on the footbrake and then pulled the handbrake and it wouldn't stop. I was really scared and shaking and then I realised I hadn't been moving and the car behind me was no closer than it had been. It must have been a false sense of motion, horrible! I do have pain in my right ear at the moment, also a bit down my throat so am thinking maybe it is a mild viral thing. There are a lot of colds about right now...

Claire, Ish, Kia, Tina, S hope you are all ok too and Sandie hope your son's wedding went well!

Take care all xxx


First of all, I need to correct my time frame, because I realized I said three months in earlier posts, but I miscounted. It just seems like it's been that long, but this began for me at the end of July, so that's ten weeks now. Anyway...

Ish--I'm having the same thing as you right now. I was feeling much better last week and then I got a cold or something; runny nose and irritated throat, and now the swirlies are worse along with pain in my affected ear and--oh, goody, something new!--tightness around my head. I've been weepy the last couple of days too because, as you said, while I am so much improved from when this started, I am so stinkin' sick of the whole thing and discouraged at the setback! I sure hope you're feeling better.

Kia-- Yeah, I have the same 2 or 3 days pretty good, sometimes even nearly normal, then back down again with the lack of appetite, fatigue, heart palpitations, can't sleep normally and wake up every two hours. Do you also find that sleep just feels different? I don't fall asleep or wake the same as before this, if that makes sense.

Gloria--I was thinking of you and praying for you last weekend in relation to the wedding; so glad you did well and had a lovely time! It almost seems like we have to retrain our brains to cope with every single possible circumstance that we might ever come across, stupid brain, so I'm very glad you did well. Yay for fun!

Shirley--How you doing? I'm back to sleeping on the couch, too. Something about sleeping flat makes me really foggy the next day, and there's no way to prop comfortably on my bed. I used to like my couch.

S-- I see you're taking St. John's Wort. I think it's helping; do you notice anything yet?

To everyone, thanks for being here, thanks for sharing and keep doing whatever it takes to take your life back! Hugs and a nice cup of tea, Ellen

Hi all,

Jemma - I am so with you on the talking to people thing. I can feel my head tightening and tightening if I concentrate on just one person's conversation. Equally, if I am having to chat to two or three people and my head is turning back and forth - like you, I get swirly headed. That is why I had to get my hubby to take me into the gardens (freezing I might add!!) just to calm my head down a bit.

With regard to the private VRT, I'm not sure Jemma. I've seen a few VRT therapists now and they all give the same exercises and relaxation things to do. I'm still waiting for yet another referral to another VRT therapist who is supposedly going to do all these other tests - I haven't heard anything yet! When I get there and they shed new light on different exercises I will gladly pass them on. I just do usually once a day my usual head side to side, up and down stuff, walking heel to toe eyes closed moving head up and down and side to side. The other is to look diagonally up and down whilst walking, then I do the same but walking around in a circle around the kitchen table. That can make me a bit dizzy, but I do think it keeps me relatively stable.

The feeling of going back in the car has happened to me a couple of times and was so scary. Recently, I have also had when just sitting watching the television and then just moved my head to speak to my hubby, split second extreme dizziness. The pain in your ear and down your throat I also get Jemma and have thought, here we go, sore throat, cold etc! Mine is my left ear though. Again it has lasted a couple of days and has gone, so I put it down to all the oddities of this thing.

Anyway, take lots of care and everyone else too. Love, Gloria xx

Hi Gloria

Thanks for your reply. By the way you look fab in your wedding outfit, it is really nice and bright, the colours are lovely!

It is such a relief to know that all these things aren't just me. The way you have described it is just the same. My neck starts tightening when i have conversations and I need time out to let it relax! The pain in my ear is a bit less today, fingers crossed it will go completely because I really cant face a trip to the doctors and more blank faces when they tell me my ears are fine!

I would really appreciate knowing if you get any new VRT and the outcome of the extra tests to see if its worth me having, I am sure we have very similar vestibular damage.

My mum said to me a while back, 'there are so many different symptoms you have' and I felt she thought they couldn't possibly all be related. Thing is at least by coming on here I know they are. One things eases off, another thing appears. There are so many effects from this thing. Still hoping for normality one day!!!

xxx


Hi folks:

Hope all is well.

Kia...what state / country are you located in? I had a lot of your same symptoms. Dizziness, nausea, fast heart beat when sleeping and at other times.

Have you ever considered lyme disease? That was at the root of my labyrinthitis / dizziness. I was originally tested in March by my ENT and it was negative. Since then I have learned those tests are crap and miss 70% of the cases.

I had to seek out an LLMD (Lyme Literate MD) who did a better, more sensitive test from the best lyme lab in the country. I came back highly positive. I have no idea when I got it as I had no rash nor do I remember a bite. less than 50% of people do.

I've been in treatment for 6 months and am almost 100%!!!!

If I hadn't gotten the proper diagnosis I shudder to think where I would be today. Probably waiting for my "labs" to clear.

Again..not saying all people with labyrinthitis have lyme. But I strongly suggest everyone get a Western Blot from IGENEX (www.igenex.com) from an ILADS (www.ilads.org) trained LLMD just to be sure. Why not rule it out before you waste months and months of feeling unwell? If it is lyme..treating sooner than later can mean the difference between curing it and having permanent damage.

Best of luck.

I posted symptoms way above on this page.

Jemma I am just the same with the fatigue, I'm really suffering from it at the moment just like I did the first time round with this. In fact at the moment it's my main symptom. I just can't shake it off. I've even looked up ME symptoms and I have had every single one of them and am now starting to wonder if I have that aswell and this thing. I am turning into such a hypochondriac (not sure that's spelt right LOL)

Gloria - you looks absolutely lovely in your wedding outfit. I am so glad you managed to enjoy the day - pacing yourself is the key to managing this I think.

Claire - I think I will be taking the advise of your VRT therapist - this time around I am going to take it slow and not try to rush things. In actual fact I can't rush anything at the moment as I am so fatigued. I had a good day one day this week and decided to go mad and have a bit of a sort out and clean cupboards out etc. By the evening I was soooo tired and the next day, well woke up with the headache from hell and totally fatigued. So from now on even when I am feeling better I will be taking things slower and pace myself. It's so good to hear that it WILL go one day .. I do have doubts sometimes although I try to get them out of my head as soon as possible.

Jemma I get pain in my ear but it seems to relate to the large gland (or muscle?) at the side of the neck that goes up to the back of the ear. Sometimes it protrudes at lot, or at least feels like it does, but when I spoke to my doctor about it he just looked in my ears and said they were clear. I also get the blank looks.

Hope everyone is ok and has a great weekend. Hugs Shirley xx

Hi all,

Shirley - lovely to hear from you. Isn't it strange how we all feel so so tired at the moment - me as well. In fact last week I felt I could have stayed in bed all day. I put mine down to the fact of having the wedding etc, but am sure it has brought back a lot of early symptoms that largely had faded to some extent. Like you said Jemma, I think I also had/have a bit of a viral something or the other as I have a cough, no cold but just a bit chesty.

Shirley the pain behind the ear and at the side of the neck - again is something i have. There are 2 big muscles at the side of the neck the scalenes and the sternomastoid something or the others!! Not good with medical terms! These are the ones that will try and hold the head in place and even though we don't think so, are involuntarily doing that job and getting overworked. I'm sure they radiate to the nerves of the damaged ear and cause all these horrible pains. My theory anyway. I also feel as if I have become something of a hypochondriac! You get so many odd things and feelings and I always think I now have something else going on. That is why doctors and medics get people to return to work or do something active because you just focus on how you are all the time. For me, I don't feel I can commit to work and don't know what to do. I know for me I do dwell too much on all of this and have got to get a distraction. Christmas is around the corner and I do know I need to organise all of that and pace myself. Again like you Shirley I rush around because i feel a bit brighter to only undo all the good work. It is really difficult when you are used to being busy though.

Brad - good to hear from you again and promoting the cause - for you anyway. Glad you are near 100%. I suppose if anyone is at all unsure bout why they have this then it is good to chat with their doctor about the possibility of lyme.

Ellen - good to hear from you too. I can't believe I'm 16 months with this. For me I haven't had any better days as such, mine has been a constant but with improving, less symptoms over time. Tightness around the head - so part of this thing for many including myself. Horrible, horrible. I do appreciate you including me in your prayers and thinking of me Ellen last weekend - it obviously worked, because all in all I had a good time - suffering a bit now though, but at least I enjoyed an important day for me. So thank you.

I'm joining Ellen with her cup of tea now - onwards and upwards and as Melissa used to say keeping the faith that one day we will all be rid!

Love and hugs, Gloria xx


I believe that I might have this condition. Does anyone get "hot" feeling in their ears. I know it sounds strange but I sometimes get this feeling. Also, my worst symptom seems to be my eyes. Especially the right. They sometimes seem "stiff". It's hard to describe. My dizziness is gone most of the time. If only my eyes would get back to normal. Does anyone else experience this? Will I ever feel normal again? This has been going on for 8 weeks now.

Hi all,

Jemma - just to let you know I have my next round of balance tests on Friday 12th November. I doubt that i will get the results or get to see the VRT therapist - but at least I have an appointment!

Ish - also to let you know I have just been able to get a prescription for Sibelium! My GP was brilliant and although not registered here as in Australia, he has got it for me on our NHS system, which means I pay only a small amount. So here goes! Will keep you posted with, hopefully, progress.

Anon- have you been diagnosed from a doctor that you may have or had labyrinthitis? 'Stiff' eyes have been reported by some on here and I have had sore, achey eyes and trouble with my vision. Even though the dizziness for me is not quite as constant as it was, I still get all the other symptoms alas!

Claire - hope you had a good time in Cardiff and feel a lot better or certainly having a good phase - along one!!

Love to all, Gloria xx


Gloria, I have not been diagnosed. Was having alot of dizziness and went to the hospital. Had head scan done and was negative. That was a relief. Went to an ENT and he put me on meds for dizziness but didn't help. Only made me more tired. About 25 years ago I suffered with dizziness for a long while and it eventually just went away. Doctors could never find what was wrong. I think they thought I was crazy. I'm wondering if this is the same thing as back then, although I have more symptoms. The last three days have been better. The symptoms aren't as "strong." Most of the dizziness is gone but I can't seem to shake the eye "stiffness" off completely. Equalibreum off a bit but better than it was before so I am thankful. Hopefully this is a sign of good things to come.

Hello Everyone,

Gloria lovely profile pic :) Glad you enjoyed your wedding shame you didnt feel 100% but you were prepared for that I suppose? Good luck with all your new tests & appts hope they can come up with a new strategy (its about time)

Shirley sorry you have had a horrible blip. know its hard for us women to give in but if your body is tired then just rest. Do you still listen to the relaxation cds? I do & my therapist said it would help to do this just to calm everything down each day. I dont suppose you are managing much with the exercise at the moment either. I havent been for 2 weeks & my youngest is now off school ill so havent been this week I hope to go tomorrow if shes back to school.Managed a walk with a friend on Mon 3 miles -1 hour. Therapist said even if I manage to have a walk each day this will help with everything.

Jemma, How are you? Didnt you have VRT before? I think maybe it does help but now I am only doing 3 exercises a day only once & not recording it as the therapist felt that I was focusing too much on how dizzy I was feeling which does make sense. I have had that momentary feeling of movement before but not for a while I remember it being quite freaky & unpleasant. Good luck with accupuncture I am all for the natural remedies.

Kia I totallyempathise with you I was exactly the same as you in the first few months. on good days really felt that I was getting better then kicked back down again for a few days.I lost 20 llbs at the start but have to say most of that has now gone back on (sadly!!) Mine has been ongoing for 10 months now but I have seen some real improvement in the lastweek or so.I dont like to jinx it so wont say too much for now. I have noticed that mainly throughout the day Iam okay & my symptoms only really appear in the evening & have had a few days/eves when I have pretty much been symptom free. Although my daughter is home ill with a nasty cold sorethroat so hoping I dont get that a it could knock me back again. My hormones play a part in mine too so have been taking vit B6 & evening primrose oil to see if that helps?

Anon I have had the stiff eyes feeling too, also pressure feeling in front of head & bridge of nose its all part of the imbalance in the ear canals.

Anyway hope to report again in a week or so & hope its positive. My therapist did say one thing to me & thats that 100 people may get Labrynthitis& 80 will recover within a few weeks but 20 will take longer or much longer,so to us 20% lots of love & positive thoughts

Claire x

Hi everyone

Well the last couple of weeks have been quite good for me (fingers crossed!). Still the off balance etc but I find I do have times, usually when I am busy doing something, where I forget about it for a bit. I am hoping those phases will gradually get longer and one day I never have to think about it because at the beginning you literally never stop thinking about it and are so conscious of every movement you make and how you feel.

Gloria good luck with the balance tests, really looking forward to hearing the outcome. What is the sibelium you are taking actually for? Hope it works....

Shirley yeh I think some people get really tired with this and we must be the unlucky ones there.

Anonymous - I have experienced the stiff eyes feeling but it has improved. For many months I even avoided moving my eyes and head as it made me dizzy but now I can do that a lot better.

Ellen I am so with you on feeling that your brain needs to adjust to every situation again. I have certain places I go to regularly which I feel quite well adjusted to but if I go to new places I can feel more off balance again. Even when we got a new kitchen floor the other week the change made me feel strange for a bit until I got used to it.

Claire I am so hopeful you have nearly beaten this because it sounds as those you are getting regular good phases. Fingers crossed you are almost out of the woods! your therapist seems to have lots of good info. I like hearing that it is reassuring.

take care everyone xx

Hi all,

Claire - fab news. Let's hope you are on the up and out of this hell! What 3 exercises are you doing? I'm only doing something once a day too. Not sure if it is having any effect as you read that VRT is supposed to induce dizziness. Mine isn't! Sometimes a bit unsteady.

Jemma - hurrah for you too! Bet you never thought you'd hear the day when you said you actually had a good couple of weeks! This Sibelium is what Ish has been taking for migraines. It is also recommended for vertigo too unlike other calcium channel blockers which it is and I don't know what that means!! Anyway, given that I have been told because I suffer from migraines and that is hampering my recovery (not convinced) can only but try.

Sue - if you are looking in - how are you on your Verapamil? And Ish - progress?

Have felt horribly tired and weak this last few days. All the muscle aches back again. Probably after effects of the wedding and I had my flu jab last week too. You just get to the stage where you put everything down to labs - which I'm not sure is a good thing. Anyway, went to the doctors and got a blood test just to check everything out.

Anyway, take care all and long may your good times continue Claire and Jemma.

Hugs, Gloria xx


Soory been so busy lately guys, uni is wrapping up with exams

To be honest i think im afflicted by two sets of symptoms, im affected by what i believe to be severe depression which is causing symptoms but this problem is caused by the 24/7 Rocking vertigo which also produces symptoms

Ish- im 100% sure its not anxiety, problem is i have a history of general anxiety disorder before this problem afflicted me literally over night :/ and i know my body better then anyone else, and they are just reading off my history its unfortunate they can do that

Gloria- i had a great holiday, only 3 weeks till i see the best doctor in Australia.

Ellen- i do think the St.John worts is helping to some extent

I still would give anything to recover, i try to pray alot cause apart from time it is the only thing you do i guess :9

Hi S,

Good to hear from you. So glad you had a great holiday - it does help to forget a bit whilst you are in different surroundings. You say you have been busy with your exams etc. Easier said than done, but try to give yourself some chill out time each day if poss. My VRT therapist explained very well when she said that because our brain and balance aren't working well; for the brain to deal with an overload of other stuff just sends it into more of a spin. Which is why she gave me these relaxation tapes. Now, I find it VERY difficult to unwind. Listening to these tapes, my mind is racing with all the things I could be doing instead of lying down doing nothing!!! However, when I was strict with myself and did this for a week - it did work - well, helped a lot anyway.

As anxiety is a big thing with this condition (involuntary too), if you have had a predisposing ailment, then doctors as you, say home straight in on that right away. Mine has been because I have migraines so they have pin-pointed that as the cause.

Anyway, take it easy and do let us know how your appointment goes. Know what you mean about the praying a lot - after you've exhausted all other channels!

Take care and everyone else too.

Hugs, Gloria xx


Hi Everyone,

Just thought I'd let you know that I'm feeling much better. I got really down there for a week or so but I've had some real improvement since then. The swirly head is gradually getting less and less, and yesterday and today I noticed it's really almost completely gone. I'm still floating around on the bed slightly when I close my eyes at night, but much less than before. I'm still taking the tablets, I really think they've been a lifesaver for me. I think they have anyway, you can never really know if you would have improved without them, but my headaches and ear pain stopped immediately after I started taking them so they've been good for that reason if nothing else.

S - sorry to hear you're dealing with depression as well. I've got a history of anxiety and depression too, so I've been consciously fighting falling into it this whole time. The doctors always put everything down to that when u have a history. It's BS. But at least you're going to see Dr Halmagyi soon and hopefully you'll get some answers. Do let us know how you go.PS - I pray a lot too, and I'll remember to include you and everyone else on here in my prayers:)

Jemma- I'm so glad to hear you're feeling better and having good moments. It's been so long for you, maybe this is the light at the end of your tunnel. I hope so.

So glad to hear some of you are having better days, it's such a rollercoaster isn't it?

Take care, Ish


Hi folks:

So..I'm here bugging you all again about lyme. I thought I would include a post from a friend a thedizzylounge.com There is a thread there to "Please Consider Lyme Disease"

Here is a message from a long time dizzy sufferer who was given diagnoses of MAV, Labs, VN, etc, etc, etc. Guess what...she just tested postive on an IGENEX Western Blot for lyme (not on the regular western blot or ELISA as they are not sensitive enough.)

Lyme is in Europe and Australia. There is a woman in New South Wales who is currently suing the Australian government because her husband was ill and they refused to treat him for lyme citing it didn't exist in Australia. When he finally passed, they did the autopsy and guess what...he was riddled with it.

Again..regular tests won't do. IGENEX and an Lyme Literate MD (LLMD) is what you need. If you continue to have a cyclical illness (Relapsing / remitting) and have been dizzy for a long time, consider lyme to get well. I'm 95% and am in 6 months of treatment. My dizziness is gone. I only have some mild tinnitus left and some mild twitching of my calfs. My anxiety, sweating, flushing, hot flashes, mental fog, depersonalization, etc, is gone.

Here is the message from the other Labs sufferer from "The Dizzy Lounge." Please get yourself tested by IGENEX...they will send you a free test kit. No other test is sensitive enough. If you come back negative, you can at least be assured you don't have it (although some lymies never test positive as it attacks their immune system and they therefore don't produce antibodies.

Be well..Brad

____________

Message below...from JCTinNC on thedizzylounge.com

Havent been here in quite a loooong time! Want to thank all of those that helped me in the early days dealing with my vertigo and anxiety symptoms.

I have been through a boat load of tests this summer including the evil lumbar punch, 9 days of laying flat!!!

I have had several diagnosis this year, VN, Labs, Anxiety, neuro virus, MS, youre just crazy, to I dont know but u'd be a good candidate for a learning school...

I finally took my health into my own hands, got copies of all labs done over the last year and decided I need to pursue a Lyme Diagnosis (check out my symptoms in my sig).

After FINALLY getting the proper test done, Western Blot serum IgM/IgG with bands, several were activated that were Lyme specific.

I see an LLMD (Lyme Literate Medical Doctor) in 1 week!

I am appalled at the medical community's lack of knowledge in this area, and all ID (Infectious Doctors) which are backed by the IDSA are taught to ignore chronic Lyme...The ID I saw told me Lyme is not here in NC...The truth is Lyme is all over the entire world, as far as I know, ticks/birds/deer dont know what a border is...

MY opinion, if you have been dealing with these type symptoms, you really need to seriously think about Lyme. And you dont have to have all or most of them.

Check out Under our Skin on Youtube.

OR visit Lymenet.org.

__________________ Vertigo spins 12-9-09, unbalanced feeling ever since, ENT diagnosed me w/ VN/Labs 2-18-10. BUT Other symptoms began to follow, internal vibrations, hi BP, low b12/iron/mag, cracky neck/spine, muscle twitching, buzzing in brain, lesions on brain per MRI, nystagmus, headache/pressure, numbness on arms/legs, ear pain/fullness, OCD, pain in hands/feet, all kinds of tinnitus, TMJD, air hunger, 'lead suit' syndrome, Insomnia, mood swings/rage, extreme visual disturbances, muscle pain in arms/chest/legs, heart PVCs, tachycardia, myoclonic jerking, painful lymphnodes (esp around cycle), smell sensitivities, severe cognitive probs... ALL of these symptoms changing or moving around on a wk to wk or monthly basis...FINALLY diagnosed with Lyme Disease Sept 2010 with a Western Blot test.

Hi Guys, I have been reading most of the posts from the start to the latest on this excellent site and find it a great help and comfort. I have many of the symptoms and experiences of the contributors. My battle with labyrinthitis started about 8 weeks ago. Initially I seemed to pick up a virus that gave me a slight head cold and a stiff neck for about 3 days, nothing really significant. As the days went by I noticed I was becoming more unsteady on my feet and started to experience the 'foggy feeling' that so many have described. other early symptoms included: One particularly bad day when I felt I was suffering with the flu and just collapsed on the sofa, a vice like pressure on my head, an aversion to bright lights, strangely I felt uncomfortable with some patterns (it's autumn and the fallen yellow leaves seem to upset me, weird in know). I went to my GP and he diagnosed labs and predicted it should clear up in a couple of weeks, I wish. Currently have another visit scheduled with him next week. My disorientation has slightly improved but now I suffer strange head pains/aches some at the back of my head others to the front and side. Some are fleeting others more longer lasting and some are just a sensation of pressure or movement on the skin. Does any of this seem familiar? Would be good to make friends with anyone who's going through something similar. Graham from Oxford UK


Hi to everyone.

It's been a while since I checked in here. We have a few newcomers..welcome. Some of you have been feeling better while others are going through bad times again, like me.

Brad- I'm from a small town about 60 miles north of Milwaukee, Wisconsin in the United States. I thought about getting tested for Lymes too because I now have the internal vibrations in my chest area and muscle pains in my chest area. I see my Physician's Assisatant Dec 9, I'll ask for it.

Thanks Ellen, Gloria and Tina for responding. I feel as if it's going to take me a while to get better or maybe be like this for the rest of my life. I haven't have time to enjoy my baby girl at all because I'm concentrating on getting better. I feel as if I did everything in the dark just to make it through each day.

Take Care all, Kia

Hi Graham,

Welcome to this site, but sorry you have needed to do so! I'm one of the more long-termers on here, but please don't let that discourage you. I did have a very bad viral attack (chest infection) which ran concurrently with my dizziness at the end of June last year (09). The chest infection alone took me a good couple of months to get over. So I am not surprised that I have not been one of the many that do get over this within a few weeks or months at the most. As my doctor said, this is one of the most unnerving and debilitating illnesses, because people wonder what on earth is happening to them.

All that you describe is typical labs symptoms. As this illness impacts on the other nervous systems in the body - people can experience so many other side effects that you would not associate with an ear disorder. Typically, apart from dizziness or swimmy headed, blurry vision, aversion to lights or fabric patterns, head tightness, foggy headed, ear pain, ear fullness, numbness anywhere, tingling sensations, stiff neck muscles or shoulder or anywhere for that matter. Zappy head pains on your head, headaches or head pains pretty much all the time. Sore head, especially at the back. Feeling on edge or anxious, anxiety, shaky, nausea (big time with me). I'm sure I may have missed a few Graham!! This site has been a saviour for us all I would say. Because symptoms are numerous and individual, not many GPs understand if you go and tell them how you feel. Many put it down to anxiety issues, or, as in my case, because I am a migraine sufferer (questionable). At the beginning because the head pains were so bad and like nothing I had experienced before, I went to the hospital. They sent me away with a tension headache diagnosis!!! I wish! Much of what i have learnt if from others on here who have imparted there own feelings and symptoms. Many of the aches and pains and odd feeling I have had, I would have thought would be down to something else had not someone on here said they, too have had the same. You do sometimes feel that you have so many illnesses going on. That or, as with me, I feel I have become a total hypochondriac!! Spent so much money on alternative therapies, supplements, snake oil LOL!! None of it has done any good. So just in case you may be tempted!

Get into some VRT (Vestibular Rehabilitation Therapy). Speak with your GP. They will probably refer you to an ENT consultant who will refer you on for therapy. These as you may or may not have heard of are a set of very specific head exercises to retrain the brain to compensate your balance.

Many of us here have had MRI scans to rule out nasties - all part of the procedure to diagnose people with a vestibular disorder. Many people recover within a few months at the most. It may linger for a little longer of for a few of us longer than that. All of that said is we do function daily, although I did give up my job. I do most things, know how to cope with the times and days when I feel not too good. You must be positive, you will recover but do remember unlike bad flu, the recovery is not linear. You peak and trough all the way through. My analogy is a game of snakes and ladders. I go up a snake, a big snake sometimes (!!)l, but then can come crashing down a long ladder LOL!! Try and keep moving and doing normal activities as this will compensate the brain more quickly. The down bits aren't good, but never as bad as when it all came on. So, again, keep heart.

Anyway, hope not to have gone on too much Graham, but do vent how you feel on here - everyone so understands.

I'm off this Friday to Guildford Hospital for some very comprehensive balance tests. I had something called the Caloric and ENG, but they are going to do some others at Guildford. Better take the sick bag I feel!! Good to hear form you again Graham. Let us know how you get on.

Hope everyone else is progressing in the right direction.

Love and thoughts, Gloria xx

Hi everyone,

Just thought I's pop on today to see how everyone is doing. Looks like some of the recent blips are slightly improving (fingers crossed) Graham Looks like you have classic labs symptoms its funny when someone new posts on her we all report the same symptoms & can all relate to most of each others 'ailments'. It really is a horrible condition, Gloria knows that more than most but as she says we all find a way of coping & when we look back to how we were there have been some definite improvements but it really is 2 steps forward 2 steps back or Snakes & Ladders!!! Push for a referral to ENT then hopefull they will carry out necessary tests & maybe refer you for VRT this will help to retrain the brain to compensate for the damage caused to the vestibular (balance) system. Gloria is right if you can keep active & at least walk every day this will all help. Mine has been 10 months now but it is improving & has been real peaks & troughs. yours could still repair itself quicker my VRT therapist told me that 100 people will get Labs, 80 wil recover within several weeks but 20 will take much longer so lets hope you are in the 80!!! Just keep positive & know that it will go eventualy :)

Well have had a funny week still think I'm improving but am having a normal 'monthly build up' blip although not as bad as some months. Getting the headaches again now after 2 weeks of not having any but still positive it has been worse than this before. Sometimes getting the spinning in bed & woozy feeling when getting up from sitting but again not as bad as it has been, so taking that as a positive & thinking I'm just slipping slightly down a short ladder.

Hope everyone is doing okay. Shirley how are you? Jemma hope you are still improving. S & Ish nice to hear from you.

Positive thoughts to everyone Claire x

Hi Gloria and Claire, thank you for your kind words of encouragement. It's so reassuring to hear that my symptoms are not unique and that you guys more than any others understand exactly what this disorder feels like. I will keep in touch. Best Wishes to you both, Graham x

Hi all

Graham welcome to this site, I see gloria has given you loads of great info which I can only echo. It really does help psychologically to find other people with the same symptoms. Hopefully you won't be one of the unlucky long sufferers!

Well I have slipped down a snake since my last post (is it down snakes, up ladders??). After a few good weeks I seem to have stepped back a bit but it's only to be expected i guess. After all this time I know the score and just got to hang on for some better days. I am not terrible but balance not great, swirly head, tired etc. Still doing bits and pieces but nothing too exciting or strenuous.

Tomorrow I am going to a Relaxation and Exercise Group which the hospital put me in touch with at the local leisure centre. I am hoping the rehab trainer might have some knowledge of vestibular disorders, but maybe that is wishful thinking considering that most Consultants barely seem to know anything about them :-)

Claire keep plugging on, you will get there.

Gloria good luck with the balance tests, I hope they give you more insight.

Ish, Ellen, Tina, Kia, S and everyone else - hope you are all ok?

Has anyone started thinking about Christmas preparations/plans?

Love Jemma x


Hey everyone

hope you are all still steadily improving without too many blips along the way!

I'm feeling extremely low today. I feel like I'm never going to beat this horrid illness. A few weeks ago I had a great 3 weeks, my balance was a lot better and I only had a slight swirly head. I really thought it was the start of my recovery. Well how wrong was I!! The last 2 weeks have been bad again; swirly head, bad balance, headaches, neck pain. It all started when the docs started messing with my hormone levels. First they took me off the pill for a few weeks which upset my cycle then just when my body started to get used to it they put me back on it! I don't think this has helped with the dizziness at all. I was also suffering with my neck so I went to an osteopath and I think he also made things worse. I'm not going bk!

I have been doing a lot of walking on uneven surfaces and in the dark as I read this would help my brain retrain but it seems that everytime I do this I wake up the next day really dizzy. Is it just my brain learning or am I having a major relapse?

I don't know about you guys but the change in weather seems to have brought back the pressure in my head and the bridge of my noise. Should I really be getting this 6 months into this?

When my dizziness was really bad in the first few months I could physically feel something shifting in my head. Almost like a spin dryer. Anyone experienced this? Well I have had that a little over the past few days and I'm so scared that I'm facing a major relapse!

My gp thinks I need to go on a mild anti anxiety tablet because he thinks I'm a nervous wreck! Lol! He is right, I am! I have been so reluctant to try these tablets but the way I feel right now I think I may give them a go.

Graham - this site is wonderful! I have had so many symptoms that have scared me to death but I have come on here and realised that I'm not alone. Try and stay as active as possible. I stayed with my parents during the first few months and did very little, I was too scared to leave the house. I really think this is why I am suffering 6 months down the line. I wasn't active enough at the start. Keep strong!

Claire, Gloria, jemma and everyone else - hope you are all well.

Love to you all

Ashley xx

Hi all,

Jemma - sorry you've slipped a little. Got me thinking - is it up or down snakes or up or down ladders?!!!!! (Such along time since I played the game!) Anyway, we know what we mean LOL!

At present I have the cold from hell. Sore throat, cough and to top it all have put my back out. I think it was to do with those ridiculous shoes I wore at the wedding, as lovely as they were. I should have reminded myself I'm no Cheryl Cole or whatever she calls herself now!!

Last week when I was so achey and really swirly headed should have been my alarm bell that a virus was afoot. Strangely though, now the cold has come out, my head has eased off a little.

Good luck with the relaxation class Jemma. Let us know if you felt that it helped any. As for Christmas, I know we have a house full and I have loads to do, but have no enthusiasm to get started yet. Maybe visiting your website Jemma and do a bit of on-line shopping. How is that going by the way? Also, don't know if you have looked at a new range from Holland called PIP Studio - it's very Cath Kidston which I like. Fab stuff. Whole ranges of things from porcelain to bed linen, stationery and handbags. If you go onto their website it is for trade only. You can send off for a sample pack. Really popular down here. It is in John Lewis and Bentalls, another big retail store as well as a couple of internet sites. Maybe a good addition to your site? Let us know what you think.

Graham - hope you are on an even keel or even better, really progressing.

Sandie - if you're looking in - how are you these days? I'd love to hear 100%!! Claire/Shirley and those Jemma has mentioned (I'll have to go back to my name of the Sharp Blue Crew again I think!!)

Hugs, Gloria xx

Hi all, I think I'm on some sort of plateau at the moment, no real improvement or deterioration. The zappy head pains are still there with vengeance (one woke me up during the night and then it was gone), the vague dizziness comes and goes throughout the day and I'm always tired particularly as the day draws on. So I'm hoping for a ladder to appear sometime soon, please, I don't mind if it only has a few rungs Sorry you found a snake Jemma :-(. Hope you feel better soon. Gloria I couldn't imagine another virus on top of this. You long termers have my admiration. Take Care Graham x

Sorry I think I started the Snakes/Ladders debate I mentioned slipping down a ladder, should have been a snake. Good thing is all that thinking about it we did, took our minds off the dizziness for a little while :). Managed 1 1/2 hours at the gym today yippee!! will probably pay for that tomorrow when I try to crawl out of bed. Not a bad day so far usually starts kicking in about now. I know what you mean about that Graham almost impossible to imagine going out in the evenings!! I am out though on Sat night to Delia Smiths restaraunt at the Norwich City ground. Maybe she'll be there! my girls were lucky enough to meet her once at the football & she was lovely.

Love to you all (The sharp blue crew) much easier Gloria

Claire x

OMG who mentioned Christmas – every time I hear that my stomach lurches lol. I am just not prepared.

Graham - nice to meet you and sorry to hear you have this dreaded condition. Your symptoms do sound like classic labs and I can only echo what everyone else has said on here. Hopefully you will be one of the lucky ones and your recovery will be quick.

I realised today that I have now had this for a year. My one year aniversary was on the 2nd November and if I had remembered I would have gone out and celebrated .. NOT !!!!

Jemma - so sorry to hear you have found that nasty slippery snake. I really hope it is short lived and you will be feeling better soon. It does amaze me how we learn to carry on when our head is all over the place.

Gloria – I am well impressed with you wearing ridiculous shoes at the wedding. For me anything with any kind of heal makes me feel off balance so I am stuck with wearing flat shoes for the time being and being short I hate it. Oh how I would love to wear my heels again lol. So sorry you have caught a cold – that's something I am dreading. I went to my granddaughters nursery today and the lady next to me kept coughing and sneezing – I couldn't get away from her quick enough – might take a Lemsip tonight just to make sure lol. The funny thing is before I got this I could go a couple of years without catching anything.

Claire – I do still listen to the relaxation tapes, I am still to get to the end of them as I always fall asleep – see they work lol. The gym has gone out of the window for the time being but I will definitely get back to it when I get a bit more energy back. You are so good for walking 3 miles in 1 hour – I really wish I had your stamina lol. I have started using my Wii Fit again – something I have not used since I got this. I used the balance board and did some of the games on it and also some yoga. At the end my balance score was 96 per cent and believe it or not, higher than when I had previous done it dizzy free !!!

All in all I have improved a bit. I am still suffering the tiredness, woozy head and visual problems and like you Claire the laying down spinning. But I am seeing an improvement and fingers crossed this blip is starting to pass. Hope I haven’t jinked myself !!

Love and hugs to everyone Shirley xx

Well like you Gloria I have caught a nasty cold, looks like I spoke to quick yesterday - always seem to jinx myself lol. So far so good though - no real change so hoping it will last.


Hi All,

I seem to have reached a plateau that I don't seem to improve on. At least it hasn't been backward in the last week or two. I have more ear pain the last few days (both ears) and moments out of the blue where I have a strong dizzy spell, but in general it is about the same. Still vaguely, slightly dizzy 24/7, and floating bobbing up and down on the bed, eye floaters n stuff. But it's ok.

@Graham, welcome to the page, sorry to hear someone else is suffering with this. It's funny, until this happened to me I'd never even heard of this. I have had all the symptoms you described and more. I'm about 4.5 months in and don't have the pain as much any more but still have the dizzy, and visual symptoms, as well as a general feeling like I'm a bit out of it or drunk or something. Don't worry it looks like these are all labs symptoms.

@Brad, I'm looking into being tested for Lyme. Up until recently I was living in Germany and then Ireland for the past 4 years, and I did a lot of hiking and outdoors stuff, so it doesn't matter if they say it's not in Australia bc if I picked it up it would have been in Europe. Unfortunately there are no LLMDs in Australia and all the doctors I've mentioned it to don't know anything about Lyme and just try and talk me out of worrying about it. My neurologist said that even if I did have it I probably got it 2 yrs ago now (when I was hospitalized with a very bad unknown virus, which was the actual first time I ever had a dizzy spell and was having very minor, very brief moments of dizziness since then until this happened) and so it is too late for treatment anyway! I'm sure I heard that people in the US are treated after having it for years and they recover. So I'm really not sure how to get it checked from here, and then treated. I looked up a pathologist here who specializes in tick borne illnesses, so I'm going to get a referral to see him. All this difficulty and I probably don't have it, but I will feel a lot more relaxed if I could just cross it off the list. Thanks for your info.

@Shirley @Gloria @Jemma Sorry to hear you're not doing so well. I can relate to the snakes and ladders feeling. The step backs are SO disheartening. For those of you with colds, lots of hot toddies should do the trick:)

@Ash, sorry to hear you've had a relapse. I've been off the pill this whole time and I really think I need to go back on it because my hormones are all over the place. Do you think being on the pill has made you worse? You said you are worse because they took you off then on it again. Did you get worse when you went off it, or back on it?

Cheers, Ish

Nice to meet you to Shirley and thank you for your message. I'm hoping that I might be a lucky one, strange to say that when I feel so low. Oh and not so happy anniversary to you. Things felt a little better this morning, no head pains during the night and the balance was promising and then just after lunch it all went wrong as I went for a walk during my lunch break, a snake appeared (sorry to continue the analogy but it does seem so appropriate). Anyway I thought I might try Ginkgo Biloba, you know desperate times and all that. I won't be holding my breath for an improvement though. Finally, I fell asleep at 7.30pm on the sofa last night and I used to be such a night bird! Take care fellow sufferers. Graham X

Hi all,

Shirley - so lovely to hear from you. It really stinks when you think you are seeing a brighter phase and then go down hill with a vengeance and to take ages and ages to come back up again. The cold isn't going to help either alas! I've got a hacking dry cough which is splitting my head and really making it more dizzy. YUK YUK!

Ish - and you sounded like you were doing so well. With regards to the Lyme stuff, to be honest I'd never heard of it until when I first went to see a private neurologist, the first thing he did was this huge blood test - cost a fortune - for about 9 different things including lyme. All came back negative. If my neurologist could request such a comprehensive blood test, you should be able to get the same Ish?

Ash - unfortunately, what you are experiencing is quite normal. As I said to Graham this thing peaks and troughs throughout whatever period it is going to take to get better. It is the worst thing to feel you've turned a corner and for it to regress again. Take heart, it will get better. As I've said before on this page, a neighbour's friend had this and it didn't just go, it faded gradually for her over a couple or so years, the better phases getting longer and longer in between the bad bits. I did the anti-anxiety tablets for a few months and they did help. Just me not liking that sort of medication and came off of it. That said, lately I feel I could go back on it again - it dampened everything down.

Graham - you sound as if you are working through this? Brave, brave man! How do you cope? Some of us on here have done the Gingko route. You need to try personally to see if it helps with any of your symptoms. As I said, I have a whole health shop of products in my kitchen. The ones I do still take are the vitamins - good vit B 50, vit C, vit E. If you can take magnesium, that is an excellent muscle relaxant and helps with headaches. Mag citrate 200mg twice a day, but for me it gives me an upset stomach. So have had to stop that for a while. Know what you mean about the night-bird thing. Comfy slippers and the telly for me these days - can't even drink wine anymore. Had a few sips but the after effects are not worth it. Graham do you have a family at home as well? Whilst my family have been huge support but sometimes it is difficult for even them to think you are still not OK, because we all look fab from the outside!

Claire - you sound as if you are going 'up the rungs' at last - a bit more than a few weeks back! Friends have already given us dates for a couple of pre-Christmas parties! OMG hope to be OK - cannot believe I am writing this a year later at the same time of year. At least I know I have progressed loads even though still not perfect. Maybe next year?!!

Going back under the duvet with hot water bottle, tissues and cough mixture!! Such an exciting life!!

Love to all, Gloria xx


Hi all

Gloria - thank you for your kind words. I feel so down again at the moment. The weather here is awful and I feel this really makes a difference to my dizziness. Are you effected by weather changes? I find that when it is cold, wet and windy, the pressure builds up more in my head and my ears hurt. It is awful! I am just trying a nasal spray to see if that helps. You know what its like; try anything to ease this hell!!

So sorry that you have a cold right now. I'm stocking up on the vit c!!

You mentioned that you tried anti anxiety meds. Can you remember what they were called? My doc has prescribed me a low dose of citalopram. Stupidly i have read the side effects and am now petrified of trying them!! I know I should because I've got it into my head again that if I go out I am going to experience a severe dizzy attack and so I daren't leave the house without someone with me! My work have been wonderful and have said that they don't want me to think about coming back until the new year but at this rate I don't think I will even be ready by then. I am so scared to do anything in case it makes my head worse. I had a dizzy spell the other evening then refused to go out for a walk with my boyfriend because I was so afraid it would make it worse.

Ish - when i originally came off the pill mid cycle I had a good few weeks so I thought it helped but now I think it was just because I am always at my best mid cycle on the pill or not. When it came to my period I had the monthly from hell! The dizziness was bad and the PMT symptoms were awful. It was like been a teenager again! Lol! I have just started my pill again and the doc said that if I have a good couple of weeks again mid cycle then I know the pill does not affevt my condition. I will keep you posted.

Jemma - How are you finding the weather changes up here in the North? They really seem to effect me. I have started my Xmas shopping but to be honest I am not looking forward to Xmas. This will be my first Xmas with this awful condition and I know it is going to spoil it. I am already turning down party invites. It depresses me so much because I love Xmas :-(

Hope everyone else is hanging in there.

Hugs

Ashley xx

Hi all, Gloria, I don't consider myself as brave at all, my condition doesn't appear to be as severe as many on this site, all those guys have all my sympathy. But it does start wear you down as the days and weeks go by. I've just got everything crossed that I might be a short term patient, but time is starting to go by. I do have a family at home and like your situation they are supportive, but it must be difficult to understand the condition unless you have experienced it first hand. That's where this site really comes into it's own, we are all in the same boat (perhaps a boat analogy is not really appropriate, I feel queasy even thinking about boats). Thanks lsh and Ash for your supportive comments.

Bye for now and take care Graham x

I forgot to ask, How many of you suffered from or still suffer from the short lived head aches/pains? They range from split seconds to a maybe 20 seconds and then they are gone and I get them predominately at the back and side of the head and around or over the eyes. Any idea what they are? Are these the zappy pains that sufferers describe. Sometimes I'm not sure I actually had one it's so quick, did I imagine it? Thanks

Graham x

Hi everyone

Sounds like everyone has the winter blues. Ash I can relate to you facing your first christmas with labs. This will be my second one and I hope it will be better than last year which was really depressing. I still wont be going to any parties or drinking alcohol but i hope it will compare favourably to last year then at least i can believe there is improvement. When did you start with labs/VN Ash?

Ash the weather here is so windy at the moment, last night I got next to no sleep because our tv aerial was hanging off and banging on the window and our fence was blowing over. I tried to sleep on the sofa in the end. Needless to say i feel grotty today and much more tired which makes the lightheadedness worse. YUK!

I too can relate to the hormone thing. I seem to feel better mid-cycle then go worse again the week of my period. I definitely feel more tired at that time which makes the swirly head worse.

Gloria hope your balance tests are going ok. The online shop has started slowly. Only a handful of orders but we are still trying to advertise it more. I looked at PIP studios, thanks for letting me know i had not heard of it and it looks lovely! I have sent them an email but i think they may only sell to shops and not online businesses, it's worth asking though.

I wanted to add that like Shirley and Gloria i dont like wearing high heels anymore. I used to wear at least 3 inch heels all the time but this year i have bought 3 pairs of flat shoes because it just makes balance harder wearing high heels.

Graham I cannot say I personally have experienced the zappy pains but i have read loads of other people have and it seems to be all part of this. You might want to try pushing your GP/ENT for balance testing and an MRI scan just to rule out anything else now you have had this a few months.

Love to all Jemma xx

Graham - just popped on to quickly say that I have had the zappy head pains especially at the beginning of this. I did get them again after this recent setback but they have gone now. For myself I feel the pain relates to my neck, it seems that whenever I get the neck and ear pressure I get the head pains. I am sure they wont last long. Good advice from Jemma re getting an MRI scan - if nothing else it will put your mind at rest.

Gloria - Hope your feeling better. I have been really lucky that my cold hasn't affected my ears and so far so good.

Well I am off to fight the shops - going to try and get some christmas presents .. oh joy lol.

Hi all, Nice to see you all on here although not nice that you are having to come on here (if that makes sense) I had my teeth whitened at the dentists yesterday, what was i thinking?? over an hour laying back in a chair unable to move!! Oh well I made it had to sit more upright at one point, I bet they thought I was mad when i said I felt too dizzy to lie back!! all in the name of vanity but looks nice!!

One for the girls- As some of you may know & know yourselves the whole dizzy stuff is very much lead by the our monthly cycles, i worked out a long time ago that mid cycle was my best time. i am now on the horrible week but good news!! This time has been so much better than any other month for ages. I am for some reason having a 3 week cycle-not fun but usually I am much worse the week before my period & this time was a hughe improvement. I dont want to jinx anything but maybe jusr maybe this affliction is saying a slow goodbye after 10 months. i really hope so & it means that there is some light at the end of this long dark tunnel fingers crossed.

Graham at the start of my condition I had all the wierd head pains & in my eyes & forehead. Sometimes stabbing & sudden. This was when I was convinced I had a brain tumour. Feel silly saying that now but at the time its all I could think about!!! I had an MRi which ruled that out & helped my peace of mind, thank goodness. Although I went to see an ENT specialist privately as the NHS had a 3 month waiting list!!! As I had insurance I think the specialist thought we may as well use it just to put my mind at rest.

Shirley/Gloria bloody colds we really dont need them in our condition it really puts everything back. i find myself literally stepping back when people say they have a cold & if someone sneezes near me in the supermarket then I make a quick about turn in the other direction. Dont even care if anyone notices. i take berrocca every day & have done since the beginning of this year. Have only had 1 cold so far this year so maybe it helps?

Anyway off out tonight & will be wearing high boots (Gloria,Jemma) so hope I dont topple over!!! Really hope you all see some improvements & i agree with whay some of you said about the weather the cold?wet weather makes the dizziness much worse this is caused by the barometric pressure & have read tha this can cause symptoms to be worse maybe thats why we have the winter blues. Roll on Summer

Love to you all Claire x


Hi all,

Well, I'll start from the beginning.

My wife and I just had our first son late last year. Everything was going so perfectly with me working and coming home to spend time with my family. Then my life started to change.

In mid-June of this year, I was struck with a random 10-15 second episode of vertigo. I was carrying the baby diaper pail and fluffing out a new garbage bag to put in it, and I got really dizzy and sat/fell on the couch. It scared the heck out of me and really brought me into panic as I had no idea what vertigo even was. All I remember was sitting on the couch with the room spinning begging my wife to help me and to please make it stop. It ended as suddenly as it came. When I calmed down from this, we headed to the Urgent Care Clinic to see what was wrong with me. The Nurse Practitioner there checked my ears and stated that she saw some fluid in my left ear and diagnosed me with Labyrinthitis. Now I had no idea what Labyrinthitis was, but she told me that it can take up to 6 weeks to go away and to go see an ENT or neuro if it persisted. For the next 2 weeks or so, I felt pretty off balance and dizzy, but was able to make through work and my daily chores. After that, I was pretty much perfect for the next 2 months.

Around labor day weekend, I started to feel really funny... almost like I was in a brain-cloud. I went to my GP, and he was worried, so he set me up an appointment with a Neurologist. That appointment wasn't until another few weeks, so I tried to relax in the meantime. After a few days, the brain-fog slowly descended into that uncompensated dizzy/balance feeling from my immediate post-"labyrinthitis" vertigo. Since I had some time before the neurologist appt, I went to go see an ENT that day. The ENT did a hearing test and a few basic balance tests (walking in-place w/ eyes closed, dix-hallpike, etc.). My hearing test was perfect, and my balance tests showed me being a bit off. He told me to wait for the MRI from the neuro before he would proceed with any kind of diagnosis.

A few weeks came and went with no change, then I had my neuro appointment. He could find absolutely nothing wrong with me through all the odd neurologist tests, but he still sent me in for an MRI just in case. The MRI was a brain-focused MRI primarly looking for MS or brain tumors, and the results were all negative (thank goodness). I went back to my ENT and reported the results to him. He could still sense something was off with my balance and claimed to see some slight amount of fluid in my left ear. He then suggested it was some type of "atypical menieres". He was very unsure of this diagnosis because I didn't really have any symptoms that would lead to it other than dizziness. Anyway, he told me to give it weeks and come back if there were any problems.

The very next night, my left ear suddenly developed a really high pitched tinnitus. Not extremely loud, but just like a squeal sound. This tinnitus has since not gone away and is present with me 24/7. The following morning we were scheduled to go on a family vacation to Arizona for a week. The timing could not possibly have been any worse. My crappy off-balance/dizziness feeling hit its peak then and I was miserable for the first few days there with ear-fullness and the tinnitus. I made it through the week having as much fun as I possibly could, but at the same time I started reading other dizziness forums who suggested seeing a neurotologist. I made an appointment while I was on vacation to get on the waiting list so I could see him when I got back home.

I got back okay and have slowly been feeling a little bit better week by week. I even tried to do some homegrown VRT exercises just to see if that helped me. I think it did, but I felt like I had hit a wall at some point and was not 100%... more like %85. Recently I had my appointment with my neurotologist, and he did some basic tests and asked me several questions. He signed me up for all the official balance tests on Dec. 1 along with another MRI which will focus on the brain stem. His initial guess at a diagnosis was either "early menieres" or lingering vestibular neuronitis because I have no discernible hearing loss. After telling me this, he lastly did a dix-hallpike test on me and noticed some Nystagmus on my left side. Not too sure what this meant for him, but it was after seeing this is when he decided on the MRI and all the testing. He didn't seem to think my sole small vertigo attack was related at all to labyrinthtis as it usually causes vertigo that lasts for hours or days before getting better. The initial labyrinthitis diagnosis seems to fit my current symptoms. I refuse to believe the "early menieres" mentioning as I have experienced none of its symptoms, really.

In a nutshell, my symptoms consist of: 24/7 high pitched tinnitus for the past 2 months (some days are louder than others), ear fullness every now and then, and pretty much slight constant imbalance/dizzniess. The dizziness is much worse at night when I am tired and in the morning after sleeping. I've noticed that I have to sleep with two or three pillows and keep my head looking up at the ceiling. I get really dizzy (but not vertiginous) if I turn my head to either side. The dizziness feels much better around the afternoon, but I know when I get home it slowly turns to crap until I fall asleep.

Over the last few weeks, I have learned to say screw it and stop being depressed and just concentrate on getting better. I am living my life as I normally would (almost). I think back to the peak of this thing back in Arizona, and I am feeling MUCH better since then. It's just been a long, slow ride. I'm still not sure if the very brief stint of vertigo I had back in June is even related to this, as I seemed to get over it extremely quickly. If you take that out, then I have had these lingering symptoms for just barely over 2 months which I gather isn't too long for most people.

Anyway, sorry for the long rant. It just feels good to get my story out. I very much appreciate your time and thoughts!!

Thanks,

Chuck


Hi Chuck,

Sorry to hear you've been suffering, but I just thought I'd let you know that your symptoms sounds very similar to mine, and I have been diagnosed with atypical early Meniere's also. I had been very occasionally having the slightest dizzy spells lasting only a few seconds, every few weeks, for about a year before all this started for me. It was so slight I thought it was anxiety, or a blood sugar thing. Then I got the tinnitus, as you describe a high pitched squeeling sound, and ear fullness, and about a month after that my constant 24/7 vertigo started. It has been 4.5 months for me and it has improved a great deal, but is not quite gone yet. I also still have perfect hearing, and so they told me after I had all the tests done that they think it is early and very atypical Meniere's, more like a labrynthitis episode, but may recur in bouts. I'm still hoping they've got it wrong and once I'm completely healed it never comes back, but you never know.

I do have an old friend who contacted me when she heard about what had happened to me and told me she also was diagnosed with atypical Meniere's. Her vertigo progressed much the same way as mine and how you describe yours, with the tinnitus and ear fullness, but she says now, after 4 years, she very rarely feels any vertigo, but when she does, the vertigo, brain cloud, and nausea (I don't have nausea) come and go for much shorter periods and are much much milder. The only symptoms she always has are the tinnitus and ear fullness, and you get used to that. She says she is much better now than when it first happened and the vertigo does go away. I was very depressed when they first said it was Meniere's but she made me feel much better about it, and gave me hope that if it ever does return after this clears, it will be mild and for a much shorter duration. I also read someone else on this message board from years back that said they had a diagnosis of atypical Meniere's, and had labyrnthitis like episodes, but each time they had an episode it was for a much shorter period each time. All this gives me a little hope that it's not so bad, it will clear up, and it will hopefully be milder if it ever does return. I just thought you might find this information helpful, although you seem to be handling it all very well anyway. I wish you the best of luck with it. Please keep us all updated as to how you progress.

Cheers, Ish


Hi Chuck, I just want to note that when I say 24/7 vertigo, I mean imbalance/dizziness, not rotational spinning vertigo. I have never experienced that. At it's worst my vertigo has been more like the ground was moving or rocking, and also a sense of dizziness or swirly head as they call it on this message board:).


Ish,

Thanks for your input!

Meniere's is an idiopathic disease meaning that doctor's have no idea what causes it. It can only be identified by the symptoms. You and I have not had any symptoms at all related to what could be Meniere's. The symptoms that it causes are episodic in nature and quite debilitating. Ours are not episodic at all. Heck even the tinnitus associated with it is supposed to be a low pitch roar which gets worse with your dizziness. "Atypical Meniere's" is even more of a laugher diagnosis that really implies how little inner ear conditions are understood by most doctor's today.

I have no idea what this is, but I refuse to scare the hell out of myself thinking it's Meniere's . The symptoms that I (and you, apparently) have can be caused by many other inner ear illnesses as well. Many labyrinthitis and VN sufferers report the same or even worse symptoms, and many of them have improved and gotten 100% better over time. In all honesty, I don't really care what the heck I have as long as it goes away soon and goes away permanently.

Sorry if this sounds like an attack on what you were saying. Believe me, that's not what I mean it to be. Thinking worst case scenario for me when there is no reason for it just drives me crazy. I truly believe that staying positive and being healthy in general will aid our bodies to get over this illness sooner rather than later. At least that's what seems to be helping me! ;)


Hi Chuck,

I know what you mean. Of course I don't take it personally, I would much prefer that they had my diagnosis wrong as well. My symptoms are a far cry from classic Menieres, so I have had all the same doubts. My neurologist said to me that everyone is different and even people with classic Menieres suffer it very differently from each other and that my bouts of vertigo instead of being for minutes or hours, go for months. Many many people with classic Menieres have tinnitus all the time however. I know someone with classic Meniere's who has tinnitus all the time, but his vertigo is very different to mine. I think there is so much about the inner ear that they don't know that they have to lump everyone into the same baskets even when it seems very different. I did a LOT of research when I was first diagnosed and it seems Meniere's is bandied around a lot and is sometimes used for the classic symptoms and sometimes just to encompass a whole inner ear syndrome that is non viral. I certainly hope it is NOT a strange variation of Meniere's and does not come back. My neurologist did say the only way the diagnosis can really be certain is if it comes back, and if it doesn't it was labs, so I've just been hoping and assuming it won't. If it does I'll deal with it then. For now I'm emotionally treating it like it is a form of labs, so I understand completely where you're coming from.

Cheers, Ish


Hi everyone

Well I have definitely slid down a snake recently. My balance is really off and keep getting lots of feeling of false motion which is horrible. Of course that causes my neck to tense up and ache. Oh its so fristrating. How can it go worse again!!!

Welcome Chuck, sounds like you have a handle on this and have researched it a lot. Hope you keep inproving and it does not prove to be such a long haul for you.

Claire I wanted to ask you about the tooth whitening. I hav been thinking about this for a while now. What is it like? Did you have the laser whitening? Does it hurt? How much does it cost and does it work? Sorry just really interested to know.

Gloria, hope you are ok? How did your balance tests go?

Everyone else, hope you are feeling better...

Jemma xxx

Does anyone else or has anyone else ever had problems while trying to sleep?

I have to sleep directly on my back with on 3 pillows at night. I'm normally a side sleeper, so this sucks badly. I don't have vertigo while turning on my sides, but I do feel like I'm getting really dizzy.

The odd thing is that I fall to sleep just fine. It's just that I can't ever stay asleep. I wake up at least 2-3 times, and it really disrupts a good night's rest. My PCP gave me some amitriptyline (10mg) which worked, but that stuff knocked me out for like 2 days!! Not to mention the awful headache and other side effects that I got from it. Tonight I am planning on trying some Benadryl instead.

Hi everyone,

Just thought I'd update. Trying not to jinx anything but I really have seen some huge improvements over the last month :) Even my off days are not as off as before. The progress is so slow twith this thing that I think its easier to gage it month by month rather than day by day or week etc etc. I am keeping my fingers firmly crossed and will only feel confident it is gone when I have had a whole month of no symptoms. I know it so frustrating to be on a blip and just wanted to share some positive with you. I am now in my 11 month with this & am desperately hoping for a better Xmas this year!!

Jemma so sorry you have gone down again, just remember the only way is back up though. I think the weather doesnt help & my off days have always been on raint dull days. My tooth whitening was Zoom whitening done in the Dentists chair I wouldnt reccommend any other than with a qualified dentist. a lot of places do it now but having been a dental nurse myself in my younger days I wouldnt trust anyone else to fiddle with my teeth!! It was bleasch on my teeth then light cured 3x 15 min bursts of it. I also have bleach & moulds to keep it up at home. My dentist charged 450 but my friends Hubby is the owner of the practice so I got it for 400. Its funny that not many people notice it unless i ask them & then they just say that they never noticed they werent white before!! Maybe its just me who notices peoples teeth perhaps because I was 'in the trade' once. Anyway i am pleased & I really think that we deserve a little pick me up.

Chuck, Sorry you are suffering who knows if the specialists really know what the heck an inner ear condition is & maybe its just easier to give it a name? I often wondered if mine was Menieres but apparently as my hearing test was normal it ruled it out. All I know is I still get a horrible roaring noise in my left ear when its quiet. Drives me nuts but if thats all i am left with from all the other awful symptoms i've been through then I can live with that!!

Anyway love to everyone else & Gloria/Shirley thinking of you both x

Claire x

Hi all,

Well have just got out of my sick bed. Really bad cold that went onto my chest. Anyway, just really bunged up with catarrh now, but feeling better. It hasn't done my head any good either, but I'm so used to that feeling now ( how awful to say that!) it almost feels secondary.

Welcome, Chuck. I admire your positive and strong attitude. You are quite right in saying how this causes such anxiety because none of us know what we really have got and how long it will last. We all live on each others anecdotal input. I'm afraid having seen tons of specialists etc, I have never really been given a proper diagnosis. So, in my experience it seems it is a time bound thing which can vary for everyone. Symptoms seem to vary across the divide making it appear to be perhaps BPPV, Menieres, or just labs or VN. It is the MOST debilitating and frustrating condition ever. My input with Menieres is that a couple of people I've known with that now have very infrequent attacks - from months and months to years. Also, don't know if it is just the people I know, but they are a little older and women. Me - well, I'm at 17 months, am much improved although I still know it hasn't gone. Like you, try and carry on my day as much near normal as I can. Haven't felt too good lately but that is because of my cold. Certainly not as bad as at the beginning. By the way, re your sleeping position. I had to have loads of pillows for a few months, but am down to 2 now and sleeping fairly flat - not that I've ever slept flat anyway. I've taken Amitriptyline and in fact have just gone back on it to help sleep as I couldn't sleep either. Sorry you had side effects from it. Good luck and keep strong.

Jemma - so sorry to hear you've slipped down again. I'm sure it is the time of year, change of weather and all that. I've been really wobbly and 'off' of late. Just hope I get back on track before Christmas. What are you doing? I didn't get to the Balance tests appointment as I was so poorly, but have a new appointment on Nov 30th.

Claire - brillo!!! Keep going girl - one of us has to get to the 'winners' spot on our snakes and ladders board LOL!!!

Hope that everyone else is fairing well or better - Graham, Ish, Ash, Shirley and all the other SB Crew!

Love, Gloria xx


Hi all

Well I can firmly say that I'm positioned back at the start of the snakes and ladders board! Arghhh! I can't take much more. The head pressure is back and the feeling of being back on a boat. What has happened to me? I was getting better. I've been racking my brains thinking about what I've done different. I slipped and jolted my head back and I've stepped up the walking but apart from that I have no idea. Things have been that bad that I've taken one antivert most days for the past week just to try and calm things down a bit. Am I never going to recover? Six months and no relief, I'm so down.

Anyway I'm not being positive so Im going to go.

Love to you all xx

Ashley


Just another quick question!...

Did anyone ever find anything that worked in relieving the head pressure? I am trying a sudafed nasal spray that I used before but I don't think it really works.

I can't believe the pressure and heavy head is back. This isn't normal or a good sign at 6 months is it?

Ash x

Thanks to everyone. I really appreciate the support! It does help to have a place where people can lean on each other for positive feedback and advice. Some of the other forums out there are such downers.

I'm planning on keeping my status posted at least on a weekly basis in the hopes that I will be a success story that other people who come down with this horror can cheer themselves up with. Hopefully we all will!

Gloria - I agree that it seems like no one really knows much about these conditions. My problem with the Menieres thing is that it does not cause constant imbalance, most certainly requires at least one or two horrible, horrible bouts of vertigo lasting hours, and like you said it comes with a hearing loss and a roaring low-pitch tinnitus. Probably the only "hearing loss" I have is way above the tested range at around 12khz (the frequency of my squealing tinnitus). I passed the normal hearing tests with flying colors.

Gloria - Whatever we all have is frustrating and debilitating. We can only concentrate on getting better and taking it one day/week at a time. The thought of me feeling perfect one day like I used to and playing with my son is what keeps me positive. I know deep down that this will happen. This illness sure has taught me patience, that's for sure!! It's good to know about the sleeping getting better, BTW. Thanks!

Hello all.

It's been a long time, seems to be a lot of new folk, I hope your stay on here is a short one. As for myself, I'm still recovering slowly, college is going well, but I find it difficult at times. I can control the dizziness using a sleeping tablet called Dalmane, which are basically Flurazepam, it's not ideal and I'm not saying you should take them, but they have always helped me, I take one the night before a busy day and 99% of the time I'll be ok the next day. Stugeron work quite well too, but for a shorter period of time.

One of the things I've noticed recently is a numbness on the right side of my hand from time to time, am just wondering has anyone else had this as one of their symptoms? It's kind of worrying with the brain thing, but my most recent MRI showed no change in the lesion, so am hoping its just another symptom of this cursed illness.

Gloria, Jemma, Claire, Shirley (and Sandie if you are still on here), I hope you are feeling better than when we "spoke" last, it's such a gradual recovery that it can go unnoticed until you look back at how it was before. I'll be at the 2 year mark in Jan, but 12 months ago if someone told me I'd be sitting down to do exams in University in a few weeks, I'd have laughed at them and then probably fallen over or something :)

Take care all,

Gary.

Ash - sorry to hear you've slipped especially after you were doing so well. It is something that seems to happen to all of us long termers and as everyone has said this condition is not linier. I've noticed with myself it all relates to how my neck is. One of my first relapses was when I towel dried my hair after a shower, the second was when I jerked my neck when I got attacked by a wasp. This last relapse seemed to happen when I strained my neck to look back at someone. Back was the head pressure, headaches, the imbalance, the 24/7 dizzy woozy feelings and also the visual stuff. I am wondering Ash if it has to do with you jolting your head back. I might be wrong but if this is the case it will wear off. Mine did take some time this time round, but I now feel that this last session has passed. It's taken about 6 weeks and this week I have only had one bad day which was Wednesday but yesterday I had hardly any symptoms and felt on top of the world. Today is not too bad either, just a bit of ear pressure, but I have a lot to do so hopefully wont overdo it and pay for it tomorrow. Stick in there Ash and do what you body says. If you feel tired, rest. If you feel you are able to go for that walk, then do so. Just take baby steps until you are back to how you were before this blip. You will get back there.

Gloria – So glad you're starting to recover from your nasty cold – I do feel for you. I know I got away with it lightly as it didn't seem to affect me that much, just a pain keep having to blow my nose all the time. Just rest up until you feel better – sending you lots of virtual hugs xx

Claire – woo hoo. My fingers, eyes, toes, EVERYTHING is crossed that this is it for you. Like Gloria said we need one of us to get to the winners spot and I certainly hope it's your turn to get there. Throw that lucky dice for us so that we can follow you and get of this 'board'. LOL xx

Chuck – welcome, although it's not the best place to be but you will find that everyone on here is very knowledgeable, not through what we get told by our doctors, but from what we have learned from one another and trailing the internet for answers. My GP and ENT docs are absolutely useless and I have had no help whatsoever from any of them. I have also not had a definitive diagnosis. Labs was mentioned at the beginning and my symptoms certainly do seem to be the same as other people with it so I am sticking to that diagnosis. After a year of having this I am actually getting VRT from the NHS, but I have had to push and push for it. It's from a neuro PT so I am wondering how much they know about dizzy people so I am not expecting much. Good luck with your recovery.

As said above I have got an appointment with the neuro PT on the 1st December. I know I should be looking forward to it but I just don't have a good feeling about it but am hoping to be proven wrong.

Hope everyone else is ok (too many to mention these days)

Love and hugs to everyone Shirley xx

Ash When I was at 6/7 months I started to notice real improvement in my symptoms then suddenly out of the blue I had a real relapse that lasted for most of the summer & beyond!!! i can honestly say that from about 10 months I have seen improvements & have even had a few days symtom free!! I have improved when I look back a month I can see the change but like I said before I can se it on a monthly basis rather than weekly as it is so slow. Just remember even if you have slid down you WILL get back up again its hard to focus on that wehn you feel so rubbish but its true,honest :)

Gary nice to hear from you glad your studies are going well hope you are on the way up & out of this now its been a long time for you.

Gloria glad you have managed to get out of your sick bed what a shame it had to happen when you had your appt but at least you have another one fairly soon. I am still avoiding people coughing & sneezing any where near me!!

Shirley I really hope you are coming out of your blip too x I still cant help having thoughts about it going then coming back again like it has before but I know I have to be positive. Really hard but at least I have been enjoying life a little more lately even my friends have noticed a change in me (not just the putting on weight again!!) Have been working hard at the gym this week & even managed 2 classes without worrying if I laid down I might get dizzy, which I didnt.

Claire xx


I stumbled onto your page today and I feel so much better that I'm not weird and alone! I've been a dizzy person sporadically for 7 months - the first bout with labs was furious and scary and lasted about 10 days, but the doctor said it's not uncommon and it'll just go away.

However, every once in a while it reappears, each time less intense. This past week has been without vertigo, but I'm very dizzy when I lie down and I can't sleep very well and I wake up with huge starts grasping my head and bolting upright...and I'm convinced my tiredness just propagates even more symptoms. When I'm up and about, I'm close to normal, although too much computer time and occasionally TV woozes me out (I never want to see a theatre movie again!). And I've learned to not pop my head up, especially while I'm working in the garden or lifting things. I find I'm hungry a lot more during my bad days and light grazing seems to help keep the daytime wooziness at bay. I find I am very sensitive to weather changes and I think I can attribute all my bad days to weather events. I'm a little worried to fly at Christmas since my ears plug easily now even when I drive down a hill. Any good advice for unplugging ears? I've had mild tinitus for several years, hardly noticeable, but since the first labs incident, it's 24/7 noisy in my left ear now and I'm terrified of getting it in my right ear.

Thanks all for for your honesty and sharing your stories! E.

Hi everyone,

Welcome E - sorry you are suffering too. Having had labs for quite a few months and had the support of everyone on this site; I've learnt so much. There are so many odd symptoms with a balance disorder. Perhaps for you if your blood sugar is low which is causing you to feel hungry and then more off balance. Weather changes affects nearly everyone who has been on here, me included. If it is really overcast and cloudy, that makes my head worse. I'm afraid I can't help with advice re flying because I have been too afraid to even think about going on a plane. A lady called Melissa who was on here a while back flew and used swimmers ear wax in both ears. She said it worked really well. Are you going somewhere nice for Christmas? Anyway, good luck and let us know how you do.

Gary - great to here from you. I am now of the opinion you take whatever gets you through this! As you say, you may have to take an odd pill from time to time, but if it helps - great. You are right to say that if anyone had suggested you would be back studying this time last year, at the time nothing could have seemed further from the truth. Absolutely thrilled for you. Even though I am also a lot lot better as well, I still get odd symptoms that I have had before, even if my head is nowhere near as bad as it used to be. So I suspect the numbness is part of it still. I am to go to yet another hospital for balance testing ( I feel it is all a bit too late now). Anyway, the questionnaire I have had to fill out about my symptoms asks about any numbness. So it must be a recognised factor. Onwards and upwards Gary and good luck with your exams.

Ash - you poor girl - it is so wretched when you have felt good and think you have beaten this thing when down the old snake you go again. It has unfortunately happened to us all, but each time it happens it is not so bad as the time before. You will get back up there again soon - try not to be so disheartened. I, also, kept thinking what had I done to bring it all back on again. It is just how it is and I don't think there is any explanation. Although for me I always put it down to the fact that when I felt better I would rush around and do too much thinking I was back to my old self again - then wham, back I would go again. So, try to keep an even pace and do rest. It is frustrating especially if you have been an active person. The heavy headedness does get less and less but takes a little time I'm afraid Ash - but it will go. Sending hugs.

Shirley - good luck with your appointment - I'm with you, I have all these appointments, but know nothing new is going to come out of it that I haven't already been told or know! Keep improving!

I'm still blocked with my cold which isn't helping my head, but am better than I was this time last year - so something to be grateful for!

Keep strong and positive everyone - it takes time but we will all get there.

Love and hugs, Gloria xx

Ugh... this sucks. I had such a 90% weekend last week where I felt pretty much great. It seems that pretty much this whole week I have fallen back down the ladder a bit.

Other than the ever-present tinnitus, the crappiest thing this week has been just the spinny/light-headed feeling. Last weekend that stuff was minimal! What comes with this crap is the difficulty in stores (e.g. Target) which I think everyone here is familiar with. So depressing!!!

The good news is my tinnitus has actually varied in volume over the past few weeks. It eventually falls back to it's "normal" annoyingly noticeable volume, but the small changes do give me hope that it won't last forever. Also my ear fullness seems to be going away. I used to get it pretty much daily, but now it only occurs weekly at the most.

I'm approaching week 12 of this mess, and I just want it to go away soon. I hate my life right now. :(


Thought I'd post again, I know it's been a while. I did go through a good few weeks and I really thought I was improving - but then the hangover- like headaches started again along with the swirly off-balance sensations, tiredness, ear fullness and a feeling like I was coming down with something, even had chills and achy tooth. Woke up on Monday with the spinning room and was able to have the Epley manouvere done on wednesday. I'm still feeling off colour but hopefully improving. This really is a case of snakes and ladders. I'm being referred back to ENT in Dec. My balance is really affected by looking up and back and also by tilting my head to one side, also bright lights in shops can start it off, as does the computer - hence the lack participation lately. Gloria - thanks for asking after me. The Verapamil is helping some of the balance issues, I now need to sort the other ones and like everyone else just want to be normal long term. Welcome to all the new followers on the site and of course to the regulars, this site is a great support. Thanks to you all. Sue xx


so yeah I'm still left with the dreaded 24/7 vertigo, i hope this will go as all my other symptoms are gone i don't feel lightheaded one bit very clear mind etc i just don't understand these false movement sensations. Ive found the best coping strategy is to ignore this thing, its debilitating yeah but if you pay more attention to it you give it more power and I found I can cope better by pretending its not there.

Ive Read many posts from early on this site and the great thing to be gained is those who had the 24/7 Vertigo eventually recovered, a guy called Chris for example i read had it for 2 years before it went so i guess it just takes time for the body to heal itself. Its now a year for me and one week.

Anyways I'm looking forward to my vacation in December Traveling to Thailand :)


Hi again......I was reading a few more comments on the site and noticed that some of you also suffer with sinus pain/stuffiness/headaches with all your other labs troubles. For many years before my labs started I considered myself "weather sensitive" and would be so stuffed up whenever the weather changed that I couldn't sleep, lying down was unthinkable, and had horrible headaches. 3 years ago my doctor finally found me a great med that rid me of 95% of my headaches and much of the stuffiness......I couldn't imagine going off of it with how supersensitive I now am with barometric pressure changes. It is a tablet called Singulair (in Canada) and is normally prescribed for asthma use, but has anti-sinus properties. It changed my life. I don't have headaches with my dizzies (although I get strange scalp tingles) and I think they might be suppressed with the Singulair. Maybe this info can help someone else out there.

Anyhow, I need to stop looking at the computer screen! Reading on monitors and on paper is pretty tough sometimes. Take care!

E.


hello all of you LAB comrads i'm 18 years old on week 5 like everyone els it comes and goes. i have found like alot of you that just keeping the mind of the fact helps. like being around friends, and family. my parents are flying away for thanksgiving i was going to go, and had the plane ticket in hand then i decided i'm staying home and will have thanksgiving with my friends lol i'm worried about high elevation which i'v noticed myself can make it get more intence. my first week was the worst with virtigo, and not knowing what was happening lol IT WAS SCARY then i found out it was LAB which helped now i'm just having days where my head is all dizzy, hard to think, sometimes i get the EEEEEEEEEE in my ears, and i mostly have symptoms when i wake up, and stare at the computer all day. STAY AWAY FROM THING THAT FLASH. but all in all it does seem to be getting better but i'm not going to keep my hopes up just for the fact i want to be prepared for it if it hits me hard "hope for the best expect the worse is how i see it also Xanax help ALOT!!! i have to get it off other people but i have read cases where it helps even though i dont like the high feeling it take the dizziness away AND I'M NOT A DRUG USER!i try to not take them and let my body fight this itself but its nice to get away from it every now and then. also drink Gatorade, and LOTS OF WATER it helps restore Electro lights and make you feel better.

the only good thing i get out of lab is the crazy dreams which i kinda like other than that IT SUCKS!!! but hell i'm just happy this is all i have.

and this page really does help cope with it. just to know other people are going through the same thing. I'll keep this page updated on how i do!!! PEACE, AND MAY THE FORCE BE WITH YOU ALL!!!

Hi all,

Welcome Sean - Sorry you are suffering this rubbish at such a young age. Some consolation maybe that my ENT specialist said if you are young, you will get over it very quickly. Small children can have this, but he said they don't really notice it and is usually put down to a bad cold or ear infection. Also, I'm very impressed with your positive attitude - the best thing to have. Keep the Xanax to a minimum because that type of meds doesn't allow the brain to compensate balance wise. However, when you feel rough and as you say need a break - then do whatever it takes!

Chuck - so sorry you have gone back down a snake as we say! Unfortunately, this is such a typical pattern for this nightmare of an illness. Progress can be slow and you really think you are not getting anywhere, but trust me you are recovering. The stores thing also gets better. I found, for me, that going into stores was Ok after about 5-6 months. Don't let that put you off - my recovery has been slower than others. The fact that you say your tinnitus and ear fullness seem to be diminishing sounds like good progress to me. Mine was with me 24/7 until about a couple of months ago. It is very depressing and does get you down, but try and keep a positive mind and say to yourself you are not going to let this beat you. You said in your earlier post about dong some VRT exercises. There has been much debate on here as to whether they help or not. Yesterday I had a follow-up appointment with my Neuro-otologist who said you have to religiously do the exercises for 5-10mins twice a day. They will take many months to get the brain re-programmed for those that haven't recovered after a few months because of the damage done to the vestibular nerve. Obviously, what quickens the recovery is to also be quite active with a normal day to day routine and some exercise whether physical or just going for a brisk walk every day. She said some people get better to a certain level and feel they can live like that, enduring the odd dizzy spell. But their recovery will take much longer as a result. Whilst I have been doing some of the Cawthorne-Cooksey exercises every day, but only once and haven't done them some days. I do think they help, but am still out on whether they are the b-all and end all to a recovery from this, but in the early stages of labs, I do think they are worth doing. Google the above exercises, or look back on this or the last page of this site as someone posted a very comprehensive list of the exercises to do. Better days soon for you Chuck. Keep strong.

Sue - good to hear from you too. Sorry you are on a downer. Are you doing VRT by the way. The way the consultant explained it to me yesterday, did make sense as to why we need to do it. Basically, the message was that the nerve damage can take a long time to recover and is quicker to re-train the brain. It still is all a nightmare though isn't it? Hope you see brighter days soon. Also interesting for me yesterday, was the fact that whilst she agreed it was important for my migraines to be controlled, but wasn't the main reason for not recovering. She said it really is a time issue and the more we do to help our recovery the quicker and better. That was me told!!!

S - glad you are having some of your symptoms go. As I've just said - time, time, time! Have a great great holiday. I did ask this consultant about flying and she said that flying only affects the middle ear because of the pressure and has nothing do with the inner ear. So if you have a blocked middle ear, with catarrh or fluid then flying can have an effect, but that is overcome with taking a decongestant. So that was good news for me.

E- my husband takes Singulair for his asthma - just might pinch some!!! Hope you see improvement soon.

Claire/Jemma/Shirley - hope you are all on the up and busy with Christmas plans or am I too early LOL!!

Love and hugs to all Sharp Blue Crew, Gloria xx

Gloria - Thanks for the encouragement! It really helps to have some "pick-me-up" words. How long have you been stuck with this? Have you improved at all steadily since the beginning?

I am having a decent day today. Tinnitus is down along with ear fullness. Spaciness/visual symptoms not too bad. I have often wondered if it would help to take the edge off anxiety during recovery with some sort of SSRI (LexaPro, Zoloft, etc.). I have never taken one before, but I read that it certainly takes your mind off of things. The lower the anxiety, the speedier the recovery supposedly. I am waiting on this until my balance tests next Wednesday, but something tells me they probably won't find anything wrong. It's not like my balance is screwed up or anything. I could certainly pass a sobriety test now (not a few months ago, though). It's just more of a light-headed/spacey feeling.

I often wonder if MAV might be my issue, but I have never really had migraines before. I have been doing the migraine diet now for around a month or so and haven't noticed anything dramatic other than the fact that I have lost 20 lbs. Yay! Honestly, though, I'd rather be a little overweight and happy than be stuck with this.

Is anyone else working still with this thing? I have hardly had any days off, as I am the sole breadwinner for my family. I am definitely looking forward to the holidays just to get some time off to relax.

Oh well, I hope everyone has a wonderful Thanksgiving! That should help in taking our minds off this thing for a while.

Hi all

Well I am pretty much sorted for Christmas shopping wise. I did most of it online. I can manage the shops ok but I dont tend to spend too long in there as I start going woozy headed.

Gloria is the neurotologist you are seeing private or NHS? I am not really under anyone's care anymore but I still do VRT twice a day. I have just started trying to do a bit of keep-fit to a DVD but it has shown me just how unfit I am. Muscles are aching and I can't keep up.

Claire the tooth whitening is something I want to have. I have looked into it and I might have to brave a trip to Manchester which would be on the train. I cannot afford £400 but I have found some cheaper places. I guess if I make it to Manchester on the train I can see that as progress although I will be a bit scared!!!

EB I can relate to your symptoms although mine are there to varying degrees all the time and don't go away completely. Tiredness definitely makes the lightheaded feeling worse as does being hungry.

Shirley hope your appt goes ok. I saw a neuro physio at my local NHS hospital for VRT. She didnt know much about labs/VN and basically just gave me the cawthorne cooksey exercises to do at home which I still do. Let us know what yours says it will be interesting to compare notes...

Gary glad you are coping with college and it is nice to know you must be improving. I hope your next scan goes well.

Ash I can identify with you. At 5 months I thought I was improving and I had a terrible setback where I was convinced I was going worse. All the crunching sounds in my ears started and I felt really dizzy. I have no explanation why it went worse but after about two months it improved a bit. Ever since it has been up and down all the way but overall improvement I guess. Keep going...are you doing VRT?

Everyone else, hope you are ok...

Love Jemma xx


hello to everyone AGAIN haha so i have a question, what drugs can i take that help the most with little side affects? i dont like being high, or DROWSY ehh. prolly crazy to see a 18 year old say that LMAO a clear head is good enough for me haha

or any exercises would be good to know.

This LAB is crazy though but i'm not going to let it get me down, and i am glad that i graduated last year otherwise it would be HELL LOL!

although at times when i feel really dizzy i just tell myself it will pass and it mostly passes leaving behind the ghostly reminence of dizziness with slight anaxity. from what i'v read who doesnt have anaxity lol

but yeah if anyone has any info i would be more than happy to aquire this knowledge, and couldnt be more thankfull PEACE!

Hi all

Wanted some advice...I have read that damage to the inner ear saccules and inferior vestibular nerve (as opposed to the superior vestibular nerve) does not show on the caloric test but can show on a VEMP test. Has anyone had the VEMP test where they put electrodes on your neck and play sound into your ear? I wondered if anyone could tell me where I can get this done and if you think it is worth having the full ENG testing done as I have only had the caloric so far.

Gloria are you having your further balance tests done on the NHS and where are you having them if you dont mind me asking?

Jemma x


Hi Everyone,

Welcome to the new people on the board, sorry to hear there are more people suffering with this.

Just thought I'd drop a line to say I'm doing MUCH MUCH better. I thought I'd plateaud a little bit back in my last post, but the pace of healing must have just been slower than before. I am now at the point where I have felt pretty much completely dizzy free for the past two weeks. The only symptoms I still have are the tinnitus (which is much lower) and very slightly blocked ears. Everything else is gone! I'm a little worried I'm posting this too soon, and I'll turn around and have a big setback..but hopefully not. It's been 5 months for me now, which I know is not long for a lot of people on this site.

I do believe that the medication I am taking has made a big difference. I noticed an immediate drop off in my headache, head pressure, sinus pressure, and ear ache symptoms as soon as I started taking it and a few weeks later my vertigo started getting less and less. The only relapse I had was when I stopped taking it for a few days, and then it took me two weeks to get back to where I was. I started taking the medication 3 months ago, and the only symptom (besides the tinnitus) I had the entire time up until two weeks ago was the swirly head, but now that is gone as well. If any of you new people want to ask your doctors about it, it is called Sibelium, generic name Flunarizine, and is a calcium channel blocker which is known to specifically target 24/7 dizziness/vertigo.

I'll keep posting to update you of my progress even if I don't have a setback. Good luck to all you:)

PS - How do you log in with your facebook profile??

Cheers, Iseult

[You have to use the “sign in” link just below “Leave a comment” — Rich]

Hi everyone,

Chuck - I was very opposed to taking anything - I react to a lot of medications and for me I think they just mask symptoms. I certainly held off of taking any antivert type meds because they stop the brain from recompensating the balance mechanism. However, having gleaned so much info with this condition and have now had it for 18 months, I have given in to my ideals regards meds. I now take 10mg Amitriptyline. This is a tiny tiny dose, but just takes the edge of everything and helps you to cope. I cannot take SSRIs because as a migraine sufferer, I do have a special tablet to take for the pain, but it cannot be mixed with SSRIs. So go for it. Many people on here have said how it has been hugely beneficial. I do admire you for working and having to cope with this as well. Be careful though Chuck and ensure you don't overdo it or get overly tired. Easier said than done when you are the breadwinner. My VRT physio said that because with this our brains are having to work extra hard because of getting bad signals from the inner ear, it is imperative to take breaks and rest, otherwise, the brain will become overworked and makes any dizziness worse. With regards to the migraine issue - if you haven't been a migraine sufferer, then it is unlikely to be MAV. Although it seems some doctors like to label a person with that if they have a lot of headaches with this. MAV usually is when you get dizzy with a headache, but then you are OK between attacks. When I look back to the end of June 09 when this all started for me and even though it has been a long haul, but I am much much better. I still get swirly headed, but it is more intermittent now. You do learn to get on with your life with this and after the first couple of months or so, carry on pretty much as normal. There are the dips but do not last as long as at the beginning. A friend of a friend who had this when she was only in her twenties, said it lasted for a couple of years but everything gradually faded until she didn't notice anything. Hopefully, you will see that happening to you in the next couple of months or even sooner Chuck. Happy thanksgiving to you and your family.

Sean - go to your doctor and get some anti-depressant meds like SSRI's that Chuck spoke of. They don't hamper you compensation process, but do help with keeping you sane through all this! The anxiety stuff that most on here have experienced is a horrible feeling. I've never been a person to suffer anxiety before. Apparently it is totally involuntary. It is because the brain is panicking our bodies because it cannot read the right signals from our balance mechanisms. Speak to your doc re SSRI's. Let us know how you get on.

Jemma - you sound brighter - are you over your little blip? So ridiculous, but I am now under two different hospitals (NHS). The Prof. Luxon clinic in London and my local hospital. That came about because the London clinic disbanded for a while as Prof Luxon retired and I didn't think I would see them again. A new person has taken over so I got my follow up appointment this week. I'm also due to go to my local hospital next Tuesday for balance tests and are going to be a repeat of what they did in London. I'll be such an authority after all this LOL!!! The reason why I'm doing both is because the London clinic has a waiting list for nearly a year!!! My next appointment with the woman I saw won't be until next Spring at the earliest. My hubby said if I do my local hospital they will be quicker with any follow-up. When I went this week they did the Vemp test and the one where you stand in a cubicle which has a moving floor and 'scenery' that revolves around you - weird! You wear a harness to stop you falling. I didn't do at all well on that! She has now booked me in to have the 'Rotational Chair' - as this tests some other p[art of the balance mechanism. She did give it a name, but I can't remember - it was a bit technical! The chair sounds quite medieval and torturous! If you are spun round then I think I will be quite unwell. When I do my VRT, I have tried to turn around 2 or 3 times, but makes me really dizzy. So I suspect that is the part of my inner ear that doesn't work too well. The balance testing in the cubicle gave poor results for me, but the Vemp and hearing test were OK. What is supposed to happen is after the chair thing, I will have had all the tests. That then gives them an idea as to which are the correct exercises for me to do. As this won't be happening in the short term, then I am stuck with the C-C exercises until someone tells me differently. I'll let you know how my balance test go next week and which ones they do. At the end of the day, Jemma, I think it is just more exercises that we do already to be honest, but if I do get some different ones that adress my deficiency, then I might see some quicker progress. If you want to pursue it, speak to your doctor for a referral back to your ENT who will forward you onto your local Balance testing unit within the NHS.

Off to do some more Christmas shopping. Feeling a bit more dizzy over the last couple of days. Don't think my body has recovered totally from my cold yet. Must carry on though - onwards and upwards!!

Love and hugs to everyone, Gloria xx

Hi gloria

Thank for that info! it is really interesting to hear about all the tests. If your VEMP test was ok then I guess mine would be too as I think we may have similar damage. I dont think I would cope too well with being spun round on a chair! Like you say though I guess even if they do find exactly what is wrong it is just more VRT so maybe it isnt worth me going all the way to London for that. I would be interested to hear what they say to you though and if there is any new vrt to try.

I think I am still having the blip to be honest. I have been a bit worse for the last couple of weeks, noises and fluttering in my ear, more swirly headed and some days of bad fatigue. Like you say though, we know the score and have to hope for onwards and upwards!

Good luck with your xmas shopping! xxx

Hi All

Well I couldnt avoid it any longer I have come down with a cold!! Wierdly i am actually relieved because at the weekend i really started to feel the dizzy stuff coming on again & went xmas shopping with my hubby on Mon & felt totally wiped out after. i even fell asleep in the chair 2 nights running then yesterday the cold symptoms really came out & I have to say it was a relief. now I just have symptoms of a cold like 'normal' people. Still a little woozy headed but nothing terrible. if in a week or twos time I have recovered from the cold & the dizziness is no worse then i will feel very positive that I may be coming through the other side of the tunnel. God I really hope so.

Hows everyone else? Gloria all those tests sound very strange best of luck with them i really hope they might come out with some more answers & maybe a cure??

Jemma go for it with the whitening you deserve a little pick me up I'm pleased with mine & also have a follow up kit to carry out at home as & when. i'm not coffee/tea/red wine drinker or smoker so hopefully it will last quite well.

Chuck & Sean sorry you are both going through all this too but a positive mind really helps & at the beginning of this I was so negative but after I realised that it WILL go even if it takes a year I WILL feel better eventually & hopefully enjoy my life a little more than I ever did before I had this. Good luck to you both & everyome else on here. Happy Thanksgiving to everyone 'across the pond'

Claire xx :)


Hey, does anyone know why labyrinthitis can be caused on a flight? I don't understand why i got quite extreme pain in one ear when the plane took off (Is it just that I had a bit of a mild cold when I went on the plane? I had been using in ear earphones before the flight too. I'm never using them again) and over the next week i lost my balance and all the symptoms and it it got worse and worse and was really scary. The first day it started with occasionally suddenly feeling like i was on a lift the floor pushing up and making me almost fall over and have to grab the wall. The next day I was swaying, i was scared i would fall in the road. i was staying in a hotel on a really high floor and every time i took the lift it was like it took the labyrinthitis a step worse. I also went on boats and trains and they were horrible and i felt like i was still on them for ages afterwards. By the end of the holiday the moving and dizziness was constant. I think it made me a bit mental, I was talking rubbish. And anxious for most of it. Also everything looked surreal, i felt like i wasn't really there and i had no control over myself, like a dream. Also I would get like a sleeping attack, is this related to labyrinthitis? If i sat down i wouldn't be able to keep my head up it head felt very heavy, and i would switch off and be like asleep but i could still hear people around me talking, sometimes trying to wake me up but i was trying to open my eyes but i couldn't move for ages. It was like i had no control over my body. I never want to go on a plane again unless i can find a way of making sure it doesn't happen. Luckily the labyrinthitis disappeared by itself, i feel for people with chronic labyrinthitis i know how bad it is and remember thinking if this doesn't go away soon i'll go mental. Labyrinthitis pretty much ruined my holiday, but it didn't ruin my life, so i'm thankful it disappeared by itself. Hardly anyone has heard of it and no one can see there's anything wrong with you so that makes it worse! I have a newfound appreciation of my balance! I also now understand why people get scared of heights, i got vertigo up tall buildings. If I ever do get it again, I think to deal with it next time, instead of staring at things and panicking thinking 'that floor shouldn't be moving' 'everything is still', i should have just gone with it positively and been like 'yeah everything's meant to be moving it's all fine', i think i just confused my brain even more. Wow this turned out to be long, I don't even have any reason to be moaning, sorry, I never really got to tell anyone what it was really like. And there's nothing much on the internet so you are all probably the most knowledgable about it. I just want to know if all the things I got were normal, especially the sleeping and saying crazy things, and if anyone knows how I can avoid getting it again on a plane. I hope everyone gets better xx


So Ish the Sibellium helped tremendously with your 24/7 rocking vertigo ?, i now have no other symptoms but that feeling of swaying / slight light sensitivity 24/7 maybe i should try this drug. Was it hard to find a doctor willing to get permission from Canberra as im in Australia too? If this drug is a miracle cure ill be so happy, but hell if its not it can only get better for me!


Hi everyone

Well I don't know what happened to me yesterday but it was one of the scariest moments throughout this illness. I've been feeling a little groggy all week so think I might have had a little virus but by Saturday was feeling better so had some friends over. We had a really nice evening and I felt almost normal throughout it, very little dizziness. Anyway my friends left around midnight and I went straight to bed. I woke at 4am and knew instantly there was something seriously wrong. My head felt like a lead weight and when I tried to move it up or down it felt like it was falling off my shoulders. I was petrified, the dreaded vertigo I had at the very start was back! I was hysterical because I was so frightened, I couldn't walk properly, not even go to the toilet on my own. I have had serious problems with my neck for the past couple of weeks. It uncontrollably spasms and that's the only thing I could think that could have caused it. I also fell asleep with my head tilted to one side whilst sat up and my consultant told me not to do this.

Anyway my mum came and called the emergency doctor as it was so strange. If I sat still I had no dizziness; if I moved my head side to side I was fine but up or down and the vertigo kicked in. The doctor came and prescribed diazepam for the spasms. Within an hour of taking it the spasms started to ease and I could move my head more easily without the vertigo being so severe.

As anyone else heard of diazepam being good for vertigo or was my oesteopath right and all my problem is my neck? The trouble is my blood work showed for around 10 weeks that I was fighting a viral infection. I don't know what to believe anymore! Lol! What I do know is that this set back as scared the living daylights out of me and made me realise that I'm not on the road to recovery like I thought! I'm scared to leave the house again!

Hope everyone else is having a better time than me!

Love to you all

Ash xx

Ish,

That's awesome that your nearing 100% of this mess. Gives me hope at least! ;)

Flunarizine is a calcium channel blocker. I know those types of drugs are used with MAV (Migraine Associated Vertigo) with good success. You really think that this is what cured you? Did you ever consider migraines as a possiblity? You said it took 3 months for it to take effect? That seems like a long time... I wonder if it was either time or the drugs that healed you. Maybe both? I'm curious if I should try something similar. The anti-virals have done nothing for me pretty much.

I currently just have the "off" vague dizziness 24/7 and the slight tinnitus going on right now. I can definitely feel myself improving ever so slightly, but it's like you said earlier, it definitely seems to go so slowly that it feels like plateauing. I am getting my balance testing on Wednesday, so we'll see how that goes.

I hope everyone is feeling better today!


Why have people in general not heard of labyrinthitis and does it count as anything like a disability, it affects life hugely :S

Gloria - Sorry, but I didn't see your post from earlier until just now. Thanks for all the information. 18 months? Wow, you sure are a trooper. I can only hope mine doesn't last anywhere near that long.

Yeah, I am with you on the drugs. I don't like taking anything that will change my attitude and normally wouldn't even consider it, but this illness is so long and draining. If I do take an SSRI, then it would just be until I got better... kinda just to numb myself from the symptoms for awhile. I'm still apprehensive, though, but I can see myself caving more and more.

The MAV issue is certainly an interesting one. I hope to heck that I don't have it at all, and I think it's way too early into it to really worry myself about it. I have never even experienced a migraine headache and rarely even get headaches now, although I have had a couple of minor ones since this whole mess started. I started the diet as a "just in case" measure and also to attack this stupid thing from all sides and see if anything worked. I cheated pretty badly last week for Thanksgiving and felt absolutely no different. I'm starting to believe what everyone else on here has said in that it just takes time. I'll continue to eat healthy, however, just because it's good for my body and it certainly needs it right now.

I'll let everyone know how my balance tests turn out on Wednesday evening. It's basically scheduled as an all day thing. I'll be getting the ENG, Rotational Chair, VEMP, ECoG, and an MRI of my brain stem. I already had an MRI of my brain, but my neurotologist wants one of my "brain stem" as a just in case measure.

Hi All,

Well I'm still feeling pretty good, so no major setbacks so far. I did feel suddenly a bit dizzy two days ago, and it lasted a couple of hours, but it was only slight, nothing major. I don't have the swirly head anymore, but I am still ever so slightly moving when I am lying down in bed. That's all.

S- The rocking vertigo stopped for me only two weeks after I started taking the Sibelium. I think it was the drug that worked because I went off the Sibelium for 4 days and the rocking vertigo came back on the 3rd day I was off it. I went back on the drug, and the rocking stopped after a couple of days. The only vertigo that stayed was the swirly head, but that got less and less over time. Only a neurologist or specialist can get the Sibelium for you, they apply to Canberra and send reports of your progress. If you are in Sydney maybe you could get a referral to see my neurologist, Dr Keith Lethlean in Randwick. Otherwise ask your specialist about it. The generic name is Flunarizine.

Chuck - I can never be completely sure if it was the drug that helped, all I know is that many symptoms I had at the time stopped as soon as I started taking it - the head pressure, head ache, ear ache, buzzing feeling in my head. I have wondered about it being MAV, many symptoms fit, but my neurologist thinks not. I don't know if he is right or wrong. He says the drug works for people with 24/7 vertigo even when they don't have MAV. Like i said before, I think there is so much about the inner ear and inner ear condition they don't know, doctors are just making educated guesses. He said the Serc works for some, and for the others Sibelium works most of the time. Serc didn't do anything for me, I tried it for two months. He said it may take some weeks for the Sibelium to work, and the drug pamphlet states that when prescribed for vertigo, it generally takes 2 months to work. I had noticeable improvement after 2 months, and for the last 3 weeks or so it has just been ever so slightly improving. Like I explained to S, I think the drug did work because of the setback I had when I had a break from it early on, and the fact that I started improving generally from the day I started taking it. My neuro says he has been prescribing it for 20 years now, with good results, and it has minimal side effects. I haven't had any. It isn't registered here in Australia or the UK, but is used in Canada, Europe, the Middle East and Asia.

Don't get me wrong, I don't want to be a drug pusher here, I'm just suggesting something that I think has helped me. I also think the natural healing of time played a big part, if not more than is apparent to me right now. There is really no definite way for me to know that. I just thought I'd suggest it in case it helped someone else as well.

Sorry, just to say that's me, Ish, above. My full name is Iseult:)

Cheers, Ish


Ish thanks so much, wow Sibelium sounds like a miracle drug ive had this frustrating 24/7 vertigo for a year since November (started over night on 16th November, 2009 ) after labrinthitis maybe theres hope for me :p thanks ive been looking for a medication i can try for so long.

Hi S, I want to warn you, there is no miracle drug for this condition. It seems to have helped me, but that doesn't mean it will definitely work for everyone. And I have been on it for 3 months now, so it is not an overnight fix. The rocking stopped for me early on, but even now I do feel some movement when I am completely still lying down in bed. Not much, but some. I haven't had any side effects, but that doesn't guarantee you won't. I definitely think you should give it a try if you can find a specialist who will prescribe it for you, but I think it is best to go into these things cautiously optimistic:) All the best of luck with it. Let us know how it goes. Cheers, Ish


Well i'm feeling a bit better. i still have my dizziness but its not as often/intence.

instead of a scary feeling its turned more into a akward head feeling if that makes sence.

i would say i'm about 35% better 6weeks in, and i'm SO HAPPY for it even though at times i'm just like WTFreak!

i still cant watch t.v. on a big screen though otherwise i will get dizzy antwhere for 15min to 12 hours. but OHH WELL, at least i can hang out with my friends and girlfriend now without being all like WOOOOOOOO EHHHHHHH NOOOOOOOO

thanks to everyone who has tried, and have helped people. there needs to be more people like you all in this world :)

i will keep up on the updates PEACE

Hi all,

Not been on here for a few days. We've been visiting an elderly relative down in the south-west of England and the weather here is pretty awful with snow and ice. Anyway, back home now and the prospects of Christmas looming fast are scaring the hell out of me! Have been reasonable, although still picking myself up from the cold I had a few weeks ago. Weird thing is how I completely reacted to different surroundings in my uncle's house. The car journey was over 3 hours. When we stopped, it was like my head was still travelling. Then inside his house, because the layout and room sizes are so different - sent my head into a bit of a spin again.

Chuck - glad you enjoyed Thanksgiving. You have to just go with the flow - enjoy and probably suffer a few consequences afterwards, but, life is for living. I pretty much put my life on hold, but now I enjoy and if it makes me a bit worse for a few days, to heck with it! Will be interested to hear about how your balance tests went.

Ish and S. I have managed to get Sibelium from my doctor here. He said that he couldn't be responsible if anything went wrong because it is not licensed here. I've not started it just yet as I went back on Amitriptyline as I needed to calm down a bit (the anxiety issues raised their ugly head again) and need to find out if I can take the two together. S - you should be able to get it from your doctor. Here, in the UK they are very strict with prescription meds and so, if my doctor prescribed it, there cannot be too much against it. It is so strange. It is not licensed here, but is available on their medication lists and some specialist migraine doctors prescribe it anyway. So confusing!

Claire/Jemma/Shirley - and all - hope you are keeping on the better side of good rather than bad!!

Love and hugs, Gloria xx

Hello everyone, Well unfortunately, I'm back! Haven't posted on here for many months and I must say I can't believe how many of you are still here which means you are still suffering! I think I might be having a relapse, and only you guys could know how upsetting that thought is - it took me a good year to get over labs and the anxiety that it brought on - and I think it's back. I might be overreacting but have just had a week of nausea and vomiting and that strange feeling of unsteadiness, stiff, sore neck etc. I think I have always had a small degree of dizziness since last time but it seems worse at the moment. Needless to say my anxiety is skyrocketing which has brought me back to the internet! And just the knowledge that if the labs has come back, there's nothing any doctors can do that will help. Anyway I thought I'd post on here because I know you will all understand. This site was such a lifeline to me for many months. Hopefully it is all just an over reaction! Gloria, Jemma, Shirley, so sorry that this hasn't left you yet! Speak soon Cathy


So after five months of waiting I saw Dr. Halmagyi today, Wow , brilliant possibly the best doctor I’ve ever seen and the best in Australia for inner ear issues, (recommend it to other Aussies on here.)

Finally a doctor who says this isn’t caused by anxiety, psychological shit like all the other doctors told me. I feel psychologically better now that one of the top specialists in the world has told me I will recover rather than telling me I’m f***en crazy and it’s all in my head. I asked about klonapin, and other SSRI’s and he said they are BS for inner ear issues, he said they are great for depression but are useless with inner ear problems etc as they hinder compensation. He even discussed with me the terrible anxiety produced by these symptoms is natural due to the fact you know you’re still yet you have feeling of false motion, and this can be extremely unsettling( as I know)

He’s unsure why this phenomenon of swaying / rocking occurs in some people, but has seen many people with this thing, unfortunately it takes time to cure itself but he has recommended I swim and gave me a prescription of sturgeon for 3 months which I’m going to try as i haven’t been prescribed it before. We talked about my history and i realised even as a child I had motion sensitivity problems etc severe sea sickness, so it’s likely a vestibular event like labyrinthitis has knocked off my inner ear and i just need to exercise eat properly / time to get better.

Whew. I went through the gauntlet of tests on Wednesday.

The MRI was a typical MRI experience, but they always seem to miss my vein for the contrast injection. Next I went to the neurotology office for my balance tests. First I did the rotary chair. That was probably the worst test. Rotating slowly in the pitch black dark makes you feel really woozy. Next up was the ENG, and that actually wasn't as bad as people made it sound. The vertigo they induced with the air in the ears was actually tolerable and nowhere near as bad as when I had it before. That or it was the fact that it was a controlled environment. The last two tests, the VEMP and the ECOG, were by far the easiest.

As for my results, the VEMP and the ECOG were both normal. The rotary chair and the ENG both were within "normal" range, but there appeared to be a slight discrepancy with my left ear which indicated some minor damage there. The MRI was all clear again, so there's absolutely nothing wrong with my brain.

The doctor called me today and basically explained that he couldn't really give me a distinct diagnosis. He couldn't say Menieres as I don't have all the symptoms required for it and the ECOG didn't show anything, but he didn't rule it out as a possibility. He said that time will ultimately tell if that's the issue. He said it's possible that it could be Labs or VN, and we can hope that that's all it is. He told me to keep active and at it for some self-induced VRT. If I don't feel like I am getting any better, then to call him back for some physical therapy VRT.

Of course while I was talking to him, my ears began to feel full again. He said it was unusual to have fullness in both ears like that for Menieres, and that it should go away with time. I brought up the issue of migraines to him and he said that that's a possibility as well. He said that most people with migraines typically are very motion sick prone and get even more dizzy with VRT. I don't really have motion sickness, and my VRT tends to help me quite a bit. He also said that people with migraines tend to get dizzy with attacks similar to Menieres. I haven't had attacks at all, so he wasn't ready to diagnose me with that. Basically, the gist of the conversation was that diagnosis will depend on time. If I get over this, then it's Labs/VN. If not, then it's migraines or Menieres. He said that he knows that the worrying can be frustrating, but to try and keep positive and active. He said that I can take the SSRIs if I am feeling too anxious or depressed.

Man, this crap really scares the hell out of me. I can explain the dizziness and the tinnitus with labs/VN, but I cannot explain the fullness. Why in the heck do my ears feel full every now and then? Can someone explain why this happens if it's not Menieres? Has anyone ever had the fullness and had labs and been cured over time? Does it ever stop? It's not that the fullness is bad... really it's not too terrible. It doesn't affect my hearing at all and my ear doesn't feel blocked. Sometimes it feels like something is just in my ears. It's just that this symptom is really difficult for me to explain away other than for dreaded Menieres.


Chuck:

I had fullness big time. It was a symptom of lyme disease and bartonella (lyme co-infection).

Been in treatment for 7 months and the fullness is now gone.

I had originally tested negative for lyme, but found an LLMD (lyme literate Doctor) who did a much better test.

Check out this link for the symptom list on page 9. HOw many do you have?

I know many lymies where dizziness, fullness, and tinnitus where their #1 symptoms along with vision wierdness.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Also checkout Flash Discussions at flash.lymenet.org

Be well.

Brad,

Talk about freakish timing. On a hunch based on your posts on this site, I went to my GP who helped me get an IGeneX IgM/IgG test. I live in Texas, so I figured that there was no way it would be positive.

I got the results today, and holy crap! My IgM test is both CDC and IGeneX positive. I have no clue what to do about it, though, as there are no LLMDs in Texas at all. I posted more of the story on the LymeNet boards (under grimmrimmer) if you want to take a look at my exact results.

Brad - Do you have an e-mail address that I could talk through you with? Or are you on Facebook? I could really use some help and support right now.

All - Well I guess more people should be lyme tested if you suffer from similar symptoms (which most of us here do). I'm sure that only a few of us on here actually have it, but I never in a million years EVER expected to have this. Especially living in a non-endemic region like Texas. I don't really know what to say except that I hope and pray that I can get through this and get fully recovered. I'll stick around here and keep you updated with any progress. I gotta find a doctor to go to first. :(

Thanks,

Chuck


hello fellow Labies

Does Lab sometimes give you double vision in one eye? i wear contacts but iv never had this untill i came down with the it THANKS!!

Hi all,

Cathy - I am so sorry you are back on here again! You know I don't mean that in a horrible way! I just can't think of going back to that really bad phase as at the beginning. If it is a relapse, then they do say that it shouldn't be as bad as at the beginning and doesn't last as long. I hope and pray for you that this is just a short blip. Just before Christmas too. Maybe you have caught a virus of some sort - although you are in the middle of your summer now?

Well, I'm much improved but still not without symptoms I have to say and like you had a resurgence of the anxiety thing which made me go back on Amitriptyline. Did you manage to come off of it? Keep in touch Cathy and I send you big hugs.

Chuck - my goodness you have had loads done - I'm having all that on Tuesday. I know it was a shock to get your Lyme test come back as positive, but as with Brad - find someone who can give you the right meds - you will be on a winner and soon feeling better. I wish there was a miracle drug for us all with this nightmare. On the ear fullness - I had that constantly at the beginning. It does go. Then it came back with the old ear-aches, but then has been gone over the last few months. My ENT consultant said that many people experience that and is because the pressure in the inner ear changes with this condition. It will get better.

S- sounds like a good meeting with Dr. Halmagyi. It is reassuring when you do get response from someone who is the 'oracle' on this stuff. But, as I think we have all concluded - it is time, time, time and as poor Cathy has shown - it can rear it's ugly head along the way just when you think it's gone. Just think positive and go enjoy your holiday - have fun in Thailand.

Sean- great news that you are coming out of this. You will be able to cope with the TV screen soon. Try to keep looking at it for a little bit at a time - as much as you can manage - it will help train your brain to cope with it. Try not to shy away from doing stuff that is uncomfortable. Little by little and before you know it you will be able to cope with most things. Keep going from strength to strength and have fun.

To all my other pals - Jemma/Claire/Shirley - are you all snowed in at the moment? Cannot believe how cold it is here in the UK at the moment. Very 'heady' at the moment - tight and swirly.

Out tonight for my first Christmas party with some friends - we are at an hotel, disco and everything. Dreading it a bit - not sure about all the noise etc. We have to live though don't we?

Love and hugs to everyone.

Gloria xx

Hi all

Glad to hear people are making some progress. Chuck at least you now have some answers and as Gloria says you can get treated for Lyme. Brad has seen a lot of improvement and I am sure you will too. I didnt think you had Meunieres based on your description because I have read that occurs in drop attacks and causes hearing loss.

I have had an ok couple of weeks. Usual swirliness and fatigue but overall I am coping ok and doing things as best I can. Gloria good luck with your xmas party! scary!!! I dont really have anythhing like that planned, it will just be another quiet xmas for me I think.

It is really cold and snowy here in the north west which means I havent ventured out much. I have been doing some keep-fit exercises inside and I do think they might help a bit although gosh they tire me out! I am so unfit!

S- so glad you finally got some reassurance. It really can help you mentally to be told something sensible by the medics and I am sure if you keep going you will improve.

Cathy sorry you are back on here. I am sure it is just a blip because I have read that even when you have fully compensated for labs/VN that a virus, fatigue, stress etc can cause decompensation but the good news is you should recover much much quicker.

Ash I hope you are feeling better after your horrible turn. Many times this illness has tricked me that I am improving then something horrible happens and you feel awful again and you think you will never get better. You do find that it is part of the ups and downs and you are not going worse overall. It will be quicker for you to get back to where you were. Let us know how you are doing...

Gloria I can relate to that feeling when you go somewhere new and your brain is trying to process it. Normally I think this all happens subconcsiously but with us it is a lot harder and we are aware of our brains struggling to process all the new information! Let us know how your balance tests go and good luck for tonight.

Claire, Shirley and everyone else hope you are ok.

Take care Jemma xx

hello everyone just catching up on everyones posts so many to look through!!! Cathy I really hope this is a minor blip for you stay positive I'm sure in a week or two it will all be gone again.

Gloria I'm with you on the travelling thing & new environments in fact my VRT thereapist told me on Thursday about the compensation process & how the brain has to get used to all new environments so when you experience a new sensation or environment it sends all the signal haywire=dizziness!!.

Jemma glad you are feeling a little better lets not jinx it!! x

I have been mostly up again even after that horrid cold not too bad (fingers crossed) I am not 100% dizzy free yet but I reckon I am nearing 90% with it oly really being bad in the evenings. Will see how my next 'monthly cycle' goes then i will know I am on the up (hopefully).Have booked a holiday to portugal in May mentioned the flying to my VRT lady & she has handed me a leaflet & recommended the ear plugs for take off & landing although she put,y mind at rest about it causing any problems with the inner ears the air pressure only affects the middle ear (used a model to explain) this helped my flying anxiety

Anyway everything is busy busy here not too much snow Gloria,the children havent missed any school (1 had an afternoon off) so they are a little disappointed as I have a friend in Sheffield who hasnt been able to leave her house all week.

Love to you all keep warm (UK's)

Claire x


Chuck:

GOOD FOR YOU! I'm not happy you have lyme...I'm happy you finally got a good test and found the ROOT of your labs.

You can now focus on beating the best.

Just another case / example of how I believe everyone with uncompensated labs should get an IGENEX test. If you do have lyme...waiting is a dangerous game.

Hey everyone, just came on here to say a quick hello and to see how everyone is doing.

Update on me: I seem to be back to doing well - I am keeping my fingers crossed that it remains that way. I would say I am near on 85/90 per cent there but have some remaining visual dizzy stuff. I saw the neuro PT on Wednesday and she gave me a list of exercises to do. She also checked my neck and gave me a neck massage which I have to say was really painful as my neck is so stiff. I have to go back on Monday for her to do it again. She told me to concentrate on the exercises which I feel will make me dizzy the most, i.e. laying down and rolling from side to side (scary) as they will be more beneficial to me. She also said that most people do recover fully but there are some that dont. But she did give me hope and when I feel like this I AM hopeful.

Glad that everyone seems to be doing better - sorry this is short but I am thinking of you all.

Hugs Shirley xx

Hi All,

I am still feeling better, although I do still feel an underlying slight dizziness sometimes and my tinnitus and ear fullness is still there.

Chuck - when I read your post about what your ECog, VEMP ect tests results were, mine were exactly the same, and the doctors said pretty much the same things to me, so now that I hear you have tested positive to Lyme, I am back thinking I really should search out some way to get tested. I was living in Ireland when this all started, so it is a possibility. Unfortunately, because there is so much debate as to whether it exists in Australia it seems impossible to find a doctor who has even heard of it, let alone test me. I really don't know what to do at this point, because I have been worried about Lyme in the back of my mind all along. I know I'm feeling much better, but that could possibly be the tablets I'm on masking it, not fixing the root cause which is what I need. Thank you for letting us know, I am going to start my battle to get tested this week.

Cheers, Iseult


Chuck man that no good i hope you feel better! how do you get Lyme in the first place!?!?

makes me wonder if i have it now lol

Sean,

I have no idea how I got it. I can only guess that it was a recent infection based on the fact that I did not have any kind of symptoms until 5-6 months ago.

I have seen ticks in my house (found one in my bedroom!) which were brought in by by my dog. I also go for walks in the local park very often with my family. It could have been from either of those. Regardless of what the state of Texas thinks, Lyme does happen here. There are several cases here each year, and many people like myself have to go out of state for treatment. If you have similar symptoms (tinnitus, dizziness, occasional ear fullness/stuffiness), it wouldn't hurt to get checked out. The stupid thing is that the only accurate test is the IGeneX test that Brad has been advocating on here. You can get the IgM test for just $100 if you want to make sure. You'll just have to find a doctor willing to get it for you. If you live in the northeast, apparently that's easy to do. My GP was really cool and open to ideas, so he helped me get my blood drawn and order the tests. I have to find someone to help me treat it now which will cost me a good bit of cash to fly out of state and pay doctors which are not on my insurance, but I have a well paying job and you honestly can't put a price on your own health.

Ish - I really feel for you living in whole other country that's non-endemic. I don't know if it's common in Ireland, but I'm sure that Brad could tell you more about that. I thought I was in bad shape living in a state that didn't acknowledge it, but at least I can drive or fly somewhere "locally" to get taken care of. You will have to be a trailblazer in Australia and see what you can do. Try and find any other people who have been through it if at all possible. I'm not sure if flying to a different country for a while like Ireland is a possibility for you. Don't give up at all and keep pushing for a solution. The sooner you get tested, the more likely it will be positive if you indeed have it. If it wasn't for Brad, I would have never been tested at all and probably would have ended up one of these chronic cases for years and years. I am hoping I caught mine in time to get healed 100%. I'll keep you posted on my treatment progress.


WOW, well its a good thing you have found the source!

I live in Missouri "tick central!! but i do not think i have just for the fact that it happend to me durring Fall and it seems to be progressively getting better week by week.

But i will get checked up if it have a relaps in the next month.

Thanks for the info and get better! same goes to everyone els!!!


hello i'm new to this page.

can i take asprin because when i take it it makes me dizzy... is that normal?


Hi folks:

Just a friendly reminder to all to go out and get your IGENEX tests. I recommend both the IgM and IgG. Both Chuch and I had "labs" but lyme was at the root of it. I suspect many more on here have it.

Lyme is on every continent. It is rampant in the EU and North America particularly.

Iseult: lyme is in Australia. There was a recent case of a man in NSW who recently died. Before he died, his wife tried to get him treated for lyme. But the Aussie medical system refused stating lyme didn't exist in Australia. He never traveled anyplace else. After he died, he had an autopsy which showed his body was riddled with the disease. She is now suing the government.

If people have dizziness / tinnitus and if it's accompanied by anxiety, stiff / sore neck, sweats, vision issues, chills, etc, you may have it.

Lyme can and typically does "wax and wane" usually in 4 week cycles. ALthough it is not uncommon for people to have a flare and then for it to receed for a few months.

Please know I"m not trying to hijack this board. I do know this is where people come for support from Labs. That's why I came here too. But...I'm trying to share what I found was the root of my labs...lyme disease. It can cause it as proven by John Hopkins University.

If you have been dizzy with uncompensated labs for months..strongly suggest lyme. Uncompensation is NOT NORMAL.

Here is a list of the more than 75 symptoms. If you have more than 15 of these, syspect lyme. I had more than 60 at one point (never all at once..symptoms would appear then disappear)

http://www.canlyme.com/patsymptoms.html

Be well! I'm 95%+ today after 7 months of agressive lyme treatment.

Be sure to watch the trailers / clips of "Under our Skin" (oscar nominated lyme documentary) on Youtube.

B


So I'm almost approaching 13 months and unfortunately still have 24/7 severe rocking vertigo that ive had since November 2009, i know it takes time to go away and i pray this is the year i recover :( ill easily forgot 2010 but managed to achieve many things this year at least ;)


Hi all

Just a quick post to see how everyone is doing? It's been pretty quiet on here recently. Everyone trying to get sorted for Xmas? I've still not finished my shopping!

Well after my horrible attack a couple of weeks ago I felt like I was improving again. I even had a couple of days with no dizziness at all ( god it feels so good when that happens doesn't it!!) Anyway a couple of days ago I started to feel a little bit spaced out and lightheaded, no swirliness just a bit unsteady on my feet. Well today I woke up with a horrid sore throat so I think I have caught my boyfriends cold. I'm hoping this explains the lightheadedness and I'm not relapsing again. Has anyone else felt more woozy when hit with another virus?

Hope you are all well and looking forward to Christmas.

Take care all

Ashley xx


Hey Ashley i do belive colds make it much worse, aswell as allergies.

i have read a couple stories where people get sick and have that spacey/vertigo feeling you were describing.

Good thing is that you will feel much better when your cold is gone. IMO this will help you cope with LAB even though it sucks. you will never really get as bad as you are when you have a cold.

i know when i have bad allergy days my head is just like AHHHHHHHHHHHHHHHHH IT WILL NEVER STOP!!!!!!!! Then afterwards its just like i'm glad i had that moment, so now i can cope with the all day spacey feeling where ever i go!

But as my condition goes i dont even know if i'm getting better LOL I'm just glad to be alive, and i know when this sickness is gone i'm going to see life through a WHOLE NEW PICTURE :D

Another tip is to stay away from fast food, or foods with high sodium they tend to make things much worse. anything that has 40% daily sodium or above per serving i would stay away from. also drink Gatorade, and water they really help with the dizzy feeling!!!!!

But as far as me and my girlfriend it sucks because i just dont feel as happy as i once was. She can tell that but she also knows i'm sick and is staying by my side every moment of it

I just take this sickness and think of it as another test in life. so we can appriciate the things that didnt mean as much to us. but now they do. at least to me. like a clear headed day is ALMOST the best thing us labies could ask for other than being cured.

If you have any Qs i will be glad to share whatever i know :)

PEACE, AND MAY THE FORCE OF GETTING BETTER BE WITH YOU ALL!!!

Hi all

Well it is so quiet on here. How is everyone? Ready for xmas?

My sister had her baby yesterday, a little boy called Henry James. I have seen a photo and he is so cute!

I am having this horrible breathing/chest problem at the moment where it feels like I cant get a full deep breath and I keep yawning trying to get air in. I dont have a cold or anything like that. Also above my heart into my shoulder area is this sort of burning feeling. I have had it for a few days now and it is starting to scare me. I am trying not to panic because that only makes it worse. I have been trying to do some exercise recently and wondered if that hasnt helped. I really dont know and wanted to see if anyone else had experienced anything similar?

Gloria did you get the results of your balance tests in the end? How did your xmas party go?

Ashley hope your cold has gone, how are you doing?

Everyone else hope you are all faring well.

Love Jemma xx


Jemma, I have that burny thing too off and on, in the same place. I have had costochondritis before (inflammation of the cartilage between the ribs, basically) and it feels like the last remnants of that. Or, more specifically, a leftover tender spot from that. I've had it previous to all the labs stuff, but it can be brought on by stress or being run down and your immune system overtaxed. I have tried to post here a few times recently and my posts get lost for various reasons before I can get them up. Sigh.

I saw that Chuck had a positive Lyme test recently; because his symptoms are so like mine, even to the time of initial onset and he lives in Texas, AND I actually did have a tick bite earlier in the summer, I'm going to see if my doc will test me after Christmas. No gloating, Brad! ha

I hope everyone else is coping well and improving very day. I've had some weird new stuff lately, like constant tingling all over which has now spread from my limbs to include my tongue! Yay! Let's include everybody in the joy! Still constant wooziness, too. Less than dizziness, really, but it's there all the dang time. I just try to ignore it all and go on with life, but by the end of the day it has worn me out.

I'm having the not sleeping well and not staying asleep more than 2 or 3 hours at a time thing again, too. Most of this had seemed to be improving and some of it had gone away entirely, now it's all back. The depression, too, not surprisingly. I hate it!!

At least the Christmas decorations are done-pared down and it took me a week, but they're up--and I'm doing most of my shopping online. Merry Christmas, all!


Jemma:

What you are describing is called "air hunger" and is a common with a Babesia infection...a common co-infection of lyme disease. Most people with lyme have lyme, Babesia, and Bartonella.

Here is a symptom list (notice the dizziness):

Babesiosis

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme)

Bartonellosis symptoms from fuzzyslippers 2.21.09 ***********************

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux

___Shin bone pain and tenderness

Hi everyone,

Not been on for a while - Christmas organising has taken over everything. I've got 12 people on the day and 5 staying for 4 days. AAARRRGH!!!!

Have been rushing around like a mad woman possessed. Thing is of course, I have now had a relapse again. Woken up with the ear pain, fullness, swirly head and mega headache!! Don't need this now. My own fault because I have got so stressed out about making sure I have everything done etc etc!!

Jemma - congratulations on becoming an auntie! Hope your sister is OK too. What your experiencing sounds like a bit of stress to me, plus you have probably over-stretched some muscles. I have that prob. Not being active over the last year, I started to do exercising and all my back muscles have spasmed. Try to do some deep breathing and relaxation techniques Jemma. Did they do that with you in the classes you went to recently? Or if you have some relaxation music, take some time out and listen to that. It seems to me that the slightest bit of over exertion, stress or worry sends my body into panic mode, even though i think I'm OK.

This lets me know I'm still with the consequences of labs and it hasn't really left. I have had a few quite good weeks (up and down), but more normal than I have had for ages. Yet, wham, back down I go this morning. Just hope it doesn't last too long.

Also, last week went for all the balance test. Caloric again except with hot/cold air. Vemp where you wear big goggles and the harnessed, moving scenery visual contraption. She had to keep re-doing the caloric one as she wasn't happy with some of the results. So that makes me think. Won't find out the results until end of December when I go for my follow up. Weird how when I had similar tests done up at Prof Luxon's clinic they said my results were in normal range. Now I'm wondering.

The Xmas party was OK - didn't do too much dancing and no drinking, so felt a bit uninvolved really, if you know what I mean. Everyone was getting merry around me. We left about 11.00pm - so not a late night. It was fun,but I didn't really enjoy as I would have done - but better than last year I suppose.

Like Ellen, our tree and decorations are up - everything looking very sparkly. Seems I have bought 2 tons of presents for everyone!! My hubby said he thought I had said I was cutting back this year!!!!! I love Christmas and just want it to be better than last year.

Love and hugs to everyone, Gloria xx

Ash, Ish, Chuck, Sean, Ellen, and S - hold on in there, brighter days will be ahead. There will be blips, but there is progression. Claire/Shirley and everyone recently on here - hope you are all coping well and feeling better. Christmas wishes to everyone. Cathy - if you are looking in - hope your relapse was just a blip too. Let us know how things are doing.

Sandie/Gary - you've not been on here for a while - good! But hope you are doing really well. Love to you both.

Jemma - what are you doing for Christmas Day?

Hi gloria

Glad you have been a bit better recently but sorry to hear you have slipped down a bit. My balance has been ok these last few weeks but this heart/chest thing is starting to worry me now. You start thinking all sorts, heart attack etc...

I dont really want to go to the doctors if I can help it because of my past experiences with them I dont have any faith in them anymore but I am really hoping it is just over exertion like you said. I have until the last few days been doing some exercise on a daily basis and maybe that has triggered everything to spasm. Perhaps the muscles are now spasming lower down my body as I compensate. Who knows, but it is scary!

Christmas day will just be a quiet one at home and visiting my parents at their house. I really hope I can breathe properly then.

Claire I had that teeth whitening done last week. It went ok and they are a bit whiter but nobody else can see much difference!

Love to everyone xx

Hi everyone

Jemma - congrats on becoming an auntie! I'm not good at all; my cold turned into an ear, throat and chest infection! The dizziness and pressure in the head is back with a vengeance. I'm a bit worried because others on here have mentioned that a cold has not affected there dizziness too much but mine has. Does this mean my nerve has been damaged again? I hope I feel better by the weekend, it's my birthday on Sunday . I would just love to feel relatively normal.

In regards to your breathing problem I have had this on and off throughout this illness. My doc always says it is anxiety related but I'm not convinced! I find I get mine if I do more so it could be related to that. Hope you feel better soon!

Because I am so unwell I wasnt able to attend my appointment to assess me for vrt so god knows how long I will have to wait again. Everything is going wrong and I was just starting to get into the festive spirit before I got ill. Now I'm dreading it :-(

Hope everyone else is fairings better and looking forward to the festive season.

Take care all

Ashley xx

Hi Everyone

Just checking in to see how everyone is!!

Jemma firstly congratulations!! what a lovely Christmas pressie for everyone :) I think you are having a little anxiety attack I know exactly what you mean about the breathing & yawning its because you are shallow breathing (anxiety related) & you kind of have to teach your body to relax & breathe properly again, if you were going to have a heart attack it would have happened by now, I really feel for you because i went through exactly the same last year my VRT lady gave me lots of relaxation techniques & i have a good relaxation recording i listen to on my ipod I really think thats all it is but its a vicious cirlce with anxiety. Glad you had your whitening no one noticed mine either but I do & thats all that matters :) Just enjoy some cuddles with your new born nephew thats enough to relax anyone xx

Gloria, sit down, breathe and relax before the invasion. I am exactly the same, loads of entertaining this year, doing so much in the house to clean,tidy & decorate then theres all that shopping!!! I have had a bad week this week after seeing so much improvement its kind of hit me again but the good news is I think I am a little under the weather & def overdoing it so hopefully when things calm down I will improve again!! (Positive thinking)

Ash, If you have a bad cold it will affect everything I am having another off week after a lot of improvement recently, I was told by the 'specialists' that being ill, hormonal changes & general tiredness will affect your symptoms so try not to worry & hopefully when you start to improve so will your symptoms.

Oh well lots to do busy, busy out Sat night & next Wed so really hope to see some improvents & desperately trying to avoid all the nasty bugs going around.

Hope eveyone else is 'not' on here because they are having a better time of it.

Claire x


So 13months is behind me and Ive been rocking non stop 24/7 since November 2009 , i barely hold onto my sanity and am motivated by the fact that ill hopefully recover from this horrific vertigo this year, but i unfortunately always find stories of people who have this for 20 years which makes me horribly depressed , some days it feels like my life is over before it has even started BTW im only 20 years old, was 19 when this started, This condition consumes me i spend every waking minute of the day worrying if i will ever recover i tell myself i will but then when i think negative thoughts they seem to be confirmed by the fact that i haven't recovered yet after a significant period of time , i keep telling myself "hey this vertigo will stop' but it has barely died down in 13 months, however i can take comfort at least that all my other symptoms have abated.


Tina You might be on to something I have been through the ringer with all the tests in every direction only to be 100% healthy, except for the headaches, dizziness, fogginess well you guys you the symptoms. Finally my neurologist and my ENT came up with migraines associated Vertigo or Vestibular Migraines basically the same thing. I was given Topirimate (topomax) to take at night and meclizine for the vertigo. WOW!!! After a few days to get used to the topirimate because it knocks you out, the migraines slowed in duration, severity and occurance. Now the thinking is that with the clean up of the migraine problem the vertigo should be lessened and it has. Both meds do make you tired but I find that caffeine helps me as it also constricts the blood vessels the opposite of the dialation that occurs during an attack. I now feel about 90% and i can feel an attack coming on and deal with it accordingly rather than being beaten down constantly never having a chance to feel good or see what bothers me. I am still dialing in the meds/ casffeine/ excedrin/ meclizine combos but there is a world of difference in the last month. It has been almost 2 years and the last month has been a blessing, other people take for granted a day without a headache or feeling like you are walking on a rope suspension bridge. I hope this helps. Mike


how do you know when you are getting better?

it feels like i'm getting better but i also feel more depressed, prolly because its takeing so long and my body is pretty much running on empty lol

any advice would be awesome THANKS!

Glad you got a diagnosis and a medication that is working for you, Mike. I am guessing here, but what I think happens is that either migraine or the aftermath of a viral inner ear bug can lead to a brain that remains in a hyper excitable state probably in the area that is connected to the vestibular system. As a result, the person becomes highly motion-sensitive and sensitive to just about any sensory input. This volatile and fluctuating state won't allow your brain to compensate from labs which needs a nonfluctuating baseline, and that's why the dizzies go on for so long. Drugs like topomax which is an anti-seizure drug can dampen some of the over responsiveness of the brain, and then the dizziness can die down.


Tina Preach on sister you are pretty much right on, viral inner ear that morphed into a migraine and all this. The meds seem to work for now and i am developing a system to deal with it. But one thing I have learned is how the brain and the nervous system/vascular system works, it's amazing. mike


How the hell I found this page I will never know. All I know is there are more of me in this world. Nice to know I'm not on my own. I've only been suffering for 10 weeks now and nearly at my wits end. Thank you all for sharing and don't feel so alone now. Merry Xmas

Hi all,

Well, been rushing around like a thing possessed to get everything ready for Christmas. Claire - am with you on how overdoing it seems to set us back! Have got the heavy headed, hangover feeling and the good old headaches are back. My neck has stiffened up again - joy oh joy!! Anyway, am carrying on as there is no alternative especially with 12 guests to entertain. I must have been MAD to suggest I would do all this this year. I suppose, in contrast to last year, I just wanted to feel 'normal' again and do all the stuff I used to without even thinking about it!

Ash - so sorry you are having a real bad time lately. It is so hard to think you will ever feel better - but you do. Like Claire, Jemma and myself - some of the long termers on here - we have had good spells and the relapses, whilst not good aren't as bad as at first and they become an annoyance because you think this thing has gone. Also, when you slide down the snake you find you carry on more as normal each time as it isn't so bad, but just takes a while to get there. You will as it gradually fades. You are young and I'm sure you will see a quicker recovery. Keep heart.

Jemma - hope you are continuing to do well despite the breathing probs - hope they have improved. Can't believe it is the 2nd Christmas we are celebrating with this labs thing. Whether it is because I'm used to it, but whilst not feeling too great at the moment, I'm carrying on as normal. Only hope I don't overdo it and have a major relapse after Christmas. Got a copy letter from the clinic in London where I went to have all the tests done. My left ear is 'off', my postural testing on the computer (can't remember what that was) is very poor and balance rubbish - to find out what all that means I have to wait until my follow up appointment in March next year!! Glad it is not life-threatening!!!!! I proved positive to a test called Utbergers or something. So basically, as I have gathered all along, is that my left ear has been damaged and whether it will fully recover - who knows. They recommend carrying on with the VRT - again, no appointment until at least 3 months in next year. So, what do you do. I'm carrying on with some of the CAwthorne-Cooksy exercises, but only because I have no others. So time, time time!!

Anyway, my love and best wishes to all my fellow sufferers on here and pray for total recovery for us all next year. I will try to come on again just before the big day, but wish everyone a very Merry and Happy Christmas.

Love and hugs, Gloria xx


Hi all, Its been a while since I have posted thought Id pop in and give an update about where Im at, basically I have recovered from my Labyrinthitis (took 18 months), I very rarely have any symptoms but have now developed some sort of CFS/ME type condition where I get easily fatigued if I do too much or get sick. Im convinced that what ever triggered the Labs also is responsible for the CFS/ME. Im gradually getting better but just had another relapse 2 weeks ago but I seem to be recovering quicker then previously, Im also battling depression due to all this stress I have been put through in the last 2 years. All I can do is continue to fight this and I know I will recover, to all those who have Labs try to stay positive, I know its hard but it will get better. Have a Merry Christmas everybody and a happy new year

DC

Hi all

Well I am still struggling with my breathing and discomfort around my heart. I am starting to think that I may have sustained a strain internally with the exercises I have been doing recently. Needless to say I have stopped completely now and am taking full rest to see if it improves. I must be so weak and unfit if 15 mins a day of fairly gentle exercise can cause this!!! I have seen the GP and they are doing a blood test and an ECG on xmas eve to rule out any heart problems. Oh fun.... there is always something with this illness!

DC nice to hear from you. I can relate to the CFS/ME symptoms. I think that compensating from labs really takes it out of us and leaves us so tired and our bodies and brains overworked. I just hope in time ALL the symptoms resolve and we can live normally again.

Gloria at least you have confirmation about which ear is affected. That is reassuring I guess - I think we all have a gut feeling about what is wrong with us but it is nice when it is medically validated! Well done for trying to entertain all those people for xmas, I dont know how you do it! As I have said, I do think the exercising and doing things helps with our balance but now I have to put it on hold as I think I have overdone it which is so frustrating. Wouldn't it be great to get on and do things without having to pay the price for it!

Ash and Claire hope you are both feeling better and everyone else I wish you all a very happy Christmas and a healthy (ier) New Year in 2011!!!

Lots of Love Jemma xxx


Hi everyone. I haven't been here in over a year. We have since moved (Canada to California!) to be near family. Last time I was on here I was literally crying every night for hours about myoclonic jerks which started and got progressively larger just as all my vertigo from the labs (which lasted 4 weeks) cleared up (early Sept. '09) that prevented me from getting any real sleep. They stopped altogether last December and I went six months with no symptoms whatsoever. Then in June the myoclonic jerks and all the twitches and vibratings came back with a vengeance. I spent months self-medicating (Nyquil and Melatonin together was all that worked) because I could not convince my new dr. for a while that this was most def. not sleep apnea and that I really needed to see a neuro.. I finally got into a neuro. and after a 20 minute interview and exam I was diagnosed with nocturnal myoclonus of sleep onset. Unfortunately at this point I am dependant on a low dose of anticonvulsants to get any sleep. I sometimes still wonder if I actually had Lyme disease and not merely labyrinthitis. At this point I am just praying that I will one day once again sleep on my own, without drugs and without the horrible jerks/spasms and twitches and tremors.

Anyway. Just wanted to update from last year.

Hi all,

DC - how great to hear from you and really pleased that you have made a good recovery despite the ME thing. I think we can all relate to that. The stress and worry that this thing causes is unparalleled. Just try to take things easy - put yourself first and don't overdo it - you will totally recover. Mind you, there is me telling you to do exactly what I'm not doing at the moment! Probably will have a meltdown after Christmas is over! Thanks for keeping us updated and every good wish for 2011.

Jemma - let us hope that 2011 will be our year to feel really well. I'm doing OK - just not wonderful. Totally stressed about getting everything organised at the moment. Seem to be cooking for 5,000! I can;t even take a glass of alcohol to keep me calm because of the effect it has on me at present! Have a good and relaxing Christmas. Expect you will be a doting auntie?! Good at changing nappies?! Love and hugs to you too.

Nan - good to hear an update from you too. I really hope the medication gives you some respite. I thin there are times in all our lives when things seem to go horribly wrong and there seems no let-up. Keep positive, because even if it is a bit of a long haul, we will all get there in the end and hopefully will be rewarded with total health and happiness. That is my Christmas thought for everyone. I hope your move has proved successful and enjoy your new home. Very best wishes to you too for 2011.

To everyone else - Claire/Shirley/Sandie/Gary/S/Brad/Chuck/Sean/Ash/Ish/Tina/Cathy and the rest of the Sharp Blue Crew - Happy happy Christmas and love and hugs for a wonderful 2011.

Gloria xxx

WIshing all us, the seekers of reassurance, information, a cure, answers about these vestibular disorders a joyous holiday season, however you celebrate. Let's hope that 2011 will bring all of us all over the world a peaceful healthy, happy, and dizzy-free new year!


To all the people here who come for encouragement and who have encouraged me, I wish for all of us a very Merry Christmas and a happy, healthy New Year!


Hi all, I'm just a newy at all of this. Only on week 8 at present. Drs have diagnosed Labs. Been in hospital and all the test CT and MRI. At present they have me on stemitel(seem to do nothing) to my 24/7 rocking and bobbing. My main question is, I'm suppose to be going to Vanuatu in 6 weeks and am a little fearful how am I going to feel on a 4 hour flight .....seeing I got this after a flight from Egypt with a slight cold. Is it going to make it worse?...or will it make no difference? Any insights would be great. Sorry if I don't make sense. But I know you all understand how hard it is to put any sentence together when you feel like this. Love to all Donna PS I hope you all know this site helps me just manage to keep my head in the right space


To Donna Walker: I know just what you mean. Doctors didn't diagnose me, but helped me by process of elimination, you know? I found this website and it has been a real lifesaver. Every single weird symptom I was having I found others here who had the same thing. I mean really, who would even think to tell a doctor "Sleep feels different and I wake up every two hours"?? Or "I have these odd muscle thumps all over and I feel like I'm looking at things through a camera lens." Classic symptoms, though. This is such a bizarre condition. I've been in this for about 4 months now and currently am having a fairly normal patch after a very rough week. I hope you can find some smoother going soon. Ellen

Hi Everyone,

I just wanted to wish you all a very Happy Christmas and much healthier and happier 2011 for you all. This year has been really difficult for all of us, so let's hope you all get the break you deserve.

I'm still doing much better, no dizziness for me for more than a month now. I'm still on the meds (Sibelium) but will be going off them in a few weeks, so we'll see how that goes. I finally found a Lyme disease specialist here in Australia. I sent him an email with all my symptoms and illnesses of the last two years and he asked to see me. I had to travel 5 hours up the north coast and stay in a motel for the night but it was worth it. He was very thorough and took some blood, but I don't have the results yet. He seemed very knowledgable and explained all my options for blood tests. He thinks the American IGENEX tests aren't right for me because my strain of Lyme (if I have it) would be a European strain and IGENEX covers the American strains. My best option is a test done in Germany that is as successful and thorough as IGENEX is for Americans. But I have to have some tests done here first. He thinks it is likely that I have Lyme but I have to wait and see what the bloods show. Anyway, if it's not I'll be very glad to rule it out because it's been on my mind for a while now. I'll keep you updated as to how it goes.

Anyway, take care, and happy holidays xx


Hello everyone, long time no hear from me but I have been checking in on everyone, but I guess I've been too fed up to post anything. Although the Verapamil has helped a little I'm still suffering the other symptoms, especially since getting a cold, the pressure in my ear along with the acute pain and the vertigo have all come back with a vengeance and has made me feel particularly lousy, especially when the dizziness made me fall over! My GP tried doing the Epley, but it wasn't successful and he put it down to Labyrinthitis. I went back to ENT in early Dec, but apart from being told to get a part-time job, go to bed for up to 2 weeks when ill and when I asked about VRT, was told it doesn't work. I came away feeling very despondant, the feeling that I'd waited for months for this appointment and was full of hope only to feel like we'd wasted each others time. I don't know what to expect next, hopefully like everyone else I would love a quiet time and ultimately a cure - here's praying to that. Love to you all Sue x


Well i'v been doing good untill today when i took a 2 1/2 hour nap and woke up feeling dizzy ugh. this time the dizziness feels like its behind my eyes. its kind of a tired feeling. but all and all i'v had this for about 4 months now and i think it is getting better with fewer days of dizziness and more days with a clear head... hopfully its will stay like that but i only know not to keep my hopes up lol also the flu season is coming around so i and everyone els should be EXTRA carful and carry hand sanitizer with you if you go out since i'v heard that colds can set you back. but if my condition stays where it is then i would say that i'm at about 40% recovery :D :D i cant wait to go joging when i get better it will be AWESOME!!!!

U can find me on facebook aswell SeanE.Sullivan@yahoo.com add me Labies i would love to have friends on there i can talk to about this

HOPE EVERYONE HAD A JOLLY CHRISTMAS!!!!!

Hi all,

Hope everyone enjoyed the Christmas festivities. We had a good time with all our family, but it was non-stop for me, preparing food, drinks etc etc. So, of course, today have stayed in bed as felt a bit rough when I woke up this morning. I knew yesterday, felt heavy-headed, tightness around my head and off balance, muscles aches, tight neck muscles etc. This morning felt wobbly and a bit nauseous. Classic symptoms for me. But, knew this would happen considering I have been charging around at the speed of light for so many weeks now.

Donna - welcome to this site and really feel for you having to be here at all. Although I haven't flown with this, but have been told by my specialist that flying only affects the middle ear which controls pressure etc. and not the inner ear and therefore should not be a problem. She said if I was a person who suffered from travel sickness when travelling, then it would be no different. So do you normally suffer with travel sickness previously? Her advice was as a precaution, to take a couple of travel sickness pills to stabilise the balance mechanism and to use ear plugs during take off and landing. Keep positive and do as much normal stuff as you can - although it is difficult when you feel so rotten sometimes.

Sue - great to hear from you again. Sorry you are still feeling so down. Have you tried Serc? For me it helps with the pressure in the inner ear which then takes the pressure off the middle ear. It doesn't help me much with the dizziness, but to have some relief is better than nothing. If you haven't tried it ask you GP, but get the proper brand Serc and not the generic betahistine hydrochloride which is what the NHS dish out. Even though they say it is the same, I found Serc is better.

Ish - have you made the decision to come off Sibelium? How long in total have you been on it now? Was it to help with your headaches originally? Good luck with you Lyme test results, do let us know what the outcome is. Glad you are doing better anyway.

Sean - there is no rhyme or reason when this thing strikes and is worse than other times. The nature of this beast - up and down but you are getting better all the time. You should try jogging now if you can. All the doctors I've spoken to recommend getting back to sport, running, gym stuff as soon as possible. Start slowly and do a little. You may feel it has set you back a bit, but it is just the brain getting used to a new thing. Go for it - it may be just the thing to speed up your recovery. Hope all in all you had a good time at Christmas too.

Jemma/Claire - hope you had good times and haven't had any blips. Hope mine is just a short one. Will take it easy for the next couple of days. Haven't got anything major planned for New Years Eve but are having friends over on Sunday. After that - the kitchen and hotel are CLOSED LOL!!!!!!!!!!

Love to you all, Gloria xx

Hi everyone

Glad you all survived the xmas period! This was my second xmas with labs. Overall it was better than last year although I am not working this time round which helps with my energy levels. I even managed a thimble full of Baileys on xmas day, made me a bit woozy headed but not as bad as it could have been! What an achievement!

My breathing is still a bit tight. I had the all clear with my heart on the ECG so I am starting to think that it may be that the compensation process with the muscles is working its way lower down my body and is now affecting my chest/back/diaphragm. Gloria you have the muscle thing going on, do you think it's possible that the tightness works its way down our bodies affecting different muscles groups as we compensate?

My mum thinks I can't link every symptom I have to this illness but we all know how strange it is!!!

There is a flu virus going round my family and I have started with a sore throat and feeling extra tired today so looks like I have it :-( My mum has been suffering really bad tinnitus 24/7 for the last 2 weeks, no dizziness for her though. The doctor has syringed her ears but to no effect so she is worried about whether it will go away by itself.

Sue - sorry your docs have been so useless, I don't think it is very encouraging to be told to get a job and that VRT doesn't work!!! How long have you been suffering now?

Ish - glad you are feeling better and no dizziness. Will be interested to hear about the Lyme tests... do let us know your results...

Gloria glad you managed all your guests over xmas, well done you!! Have a well deserved rest, we all know how much this takes it out of you. I do think that exercise helps with the dizziness because I saw an improvement in my balance when I was doing the aerobics stuff a few weeks ago however it seemed to cause my muscles to spasm in my chest/back. I have stopped exercising now but would like to start again in the new year if I feel up to it by then!

Hopefully 2011 will be our year of reovery!

Fingers crossed.......

xxx

Hi Jemma,

Way to go girl - Bailey's!!!!!! The first rung on the ladder to normality! Hope you enjoyed yourself much better than last year. Overall I have to say I was much better and only myself to blame for my, hopefully, little blip!

So strange how you think your chest back diaphragm muscles is to do with compensating. ME TOO!!!! I have had tight, spasmed muscles in my side, around my waist. My lower back and leg muscles are all out of sync too. Isn't that strange! With me I can't say it is to do with over-exercising. I have never had muscles spasm in these places before - so maybe there is something to it. I thought about going to my doctor's again, but by now they must think I am a hypochondriac! All these odd things do get you down though don't they? I just want to go about and feel well, and normal, even though I am tons better than last year, but want rid of every little niggling side effect too!

So sorry for your mum with her tinnitus - maybe part of a viral infection. Apparently, Serc is supposed to be good for tinnitus.

Like you too Jemma, I want to really get on with a healthy regime in the new year and start a good exercise programme. I've already signed up for a Pilates class near me. Never done it before, but my physio said it would be good for my posture and back toning. So will see how that goes. Also, want to start swimming! I do like swimming, but how lazy is this - can't be bothered because of having to do my hair afterwards and everything - such a chore!!! See - with an attitude like that no wonder I'm not fit LOL!!!

Keep well, and hope you don;t suffer too much with your cold/flu.

Speak soon, Love and hugs, Gloria xx

Hi all

Merry Christmas to you all (sorry it's a bit late, I had a tough week b4 Xmas!) my infection really brought back all of the horrid symptoms but I still managed to have a small party for my birthday and I really enjoyed it even though I wasn't symptom free. I nearly cancelled in the afternoon because I felt so bad so I was glad I fought on through it.

Gloria I'm so pleased you got through your Xmas and enjoyed it. I don't know how you did it! I wasn't good on Xmas day. The morning was ok but by the afternoon I felt awful and couldn't even sit through all 3 courses with my family. It was my own fault I over did it on Xmas eve because I was feeling quite good. I'm hoping I do better on new years eve! I saw that you mentioned to Donna about what your consultant said about travel sickness. Did your consultant mention if this condition can leave you with travel sickness if you didn't have it b4? This is something that is really concerning me. I need to travel all over with collegues as part of my job and at the minute I am finding some journeys make me feel really queasy! I never suffered b4 and I'm worried I'm going to be left with it as travel sickness is to do with the inner ear. I really don't want to have to give up my job as a result of this awful illness!

Jemma- I had an ECG and bloods b4 Xmas as I have been experiencing palpitations every day. I have suffered with them in the past but never as frequent as I am experiencing now. My heart rate was a bit fast but they just keep saying it's anxiety. Well I don't see how standing washing the pots can send the body into a panic attack but there you go! Lol! I think mine may be due to lack of activity. I used to lead such a hectic life but now it can be days b4 I leave the house.

Claire/ Shirley and the rest of the crew - hope you all had a lovely Xmas?

One thing I have noticed lately is that the swirling in my head has changed. Before I could physically feel like something was moving around and around in my head but now the feeling is a lot lighter but maybe a bit faster when I close my eyes. Does that make sense or do I sound ridiculous?! I sound ridiculous, I know! I analyse it far too much.

Anyway anyone got any plans for new years eve? I can't wait to see the back of this year! Although I am scared that 2011 will see no change. But no I've decided, 2011 is about being positive and getting my life back.

Love to u all xx

Ashley

Hi Ash,

Well done you for getting through Christmas, even though there were rough patches. That was pretty much how I was last Christmas (my first with labs).

Ash I think if you have started to feel a bit queasy when travelling and never did previously, this is because the nerve damage to the inner ear is quite new and fresh. Whilst I am no doctor, although have learnt SO much over the last 18 months, this will get better as you recover and the nerve heals. The more things you do to re-train the brain, even if they make you feel rotten, you need to do. I would - only when you need to make a journey - is to take travel sickness pills and if flying, use ear plugs too. Most people on here have reported no probs with travelling after a few months of this thing. So don't get too down beat. The palpitations thing and all the head stuff is really typical of labs. I would fill a whole book of symptoms that I have experienced over the course of this thing, and because I have never had anything like them before, has made me think I've got all sorts of awful diseases. This does make you turn into a bit of a hypochondriac!! Keep positive Ash - we will all win over this nightmare.

Having a quiet New Years Eve - learnt my lesson from overdoing it last week-end at Christmas! Might sip a little Baileys (will raise a glass to you Jemma - hope you will try the same again LOL!!!) and watch Jools Holland. We then have friends over for a meal on the Sunday to celebrate. After that it is the part I hate after all the festivities which is january and Feb - so dull and dismal. Still, onwards and upwards positive thinking for what will be a positive year for us all.

Love and hugs, Gloria xx

Merry Christmas & Happy New Year to everyone!!! I am still here, have been checking on everyone on here the last few weeks when I've had time but havent posted as wasnt feeling too positive!!! Feeling better now so thought I'd catch up with you all. Jemma really glad your ECG was okay I know what you mean about linking everything to this condition but its hard not to. Hope your Mum gets better & you havent got the flu. So many people seem to have it & I know of several (incl my sister) who have ended up on steroids anti biotics & inhalers as its got so bad & affected the chest. I now dose myself up with so many vitamins & echinacea as I really dont weant to get anything to 'set things off again' I think my bad patch before xmas was that my body is fighting off the bugs & affected the 'dizzies'. Spent all of xmas entertaining & still 2 lots of bed changes to come!!! roll on Wed 5th kids back at school, me back at gym & my house back to myself. Gloria my hotel will be closing down then too!!! :) I am going to Portugal in May so really hope the flying doesnt mess anything up! I was given some leaflets from my therapist about flying with inner ear conditions so must dig them out, she has assured me it will be okay!!!

Anyway a positive 2011 to everyone on here I am reaching my 1 year Labs Birthday in Jan. Never imagined then it would be so long. Anyway I have been enjoying a few tipples this xmas & to be honest I feel hungover most mornings anyway so may as well have a reason for it and when I relax with a few glases I forget all my troubles anyway, so maybe go on be a devil let yourselves go for New Year & raise a glass to a positive dizzy free year ahead!!!!

Happy New Year Claire xx


Have been reading this site for the past 3 months now. Like many of you have been suffering this thing since november 09 so this was my second xmas too. An improvement on last year as was not even going out the house much but the symptoms are most deff there. Like many of you have a few good days then straight back down to earth with a bang - swirly head, swaying, stiff neck, could go on an on and on!!!! is anyone else really sensitive to noise. When out shopping etc just want to turn the volume down on everyone and everthing. Even the beeping at the supermarket checkout seems so loud, something i would have never have noticed before. My family have been so understanding about labs, but get the feeling friends etc feel i should be better now and i cant even be bothered to explain what it feels like this far on as unless experienced it cant expect anyone to understand. Anyway glad had the courage to write in as can be a very isolating illness. Hoping 2011 will be less dizzy for everyone on here, can only hope! Wendy x

Hi everyone,

Claire - lovely to hear from you. Isn't it rubbish when you don't feel great but have to carry on because of big occasions like Christmas. I kept myself going, but knew once I stopped I would be in for it! Still, we did it - well done us I say!

Wendy - welcome and sorry you are at your second Christmas too. Whilst this is the worst thing ever, it is reassuring when you read of others experiencing the same or similar symptoms and know you are not totally barking mad! Noise and light for me are 2 of the many things. That has got better recently, but noticed how it was worse the other day which goes with my blip I'm having at present. I also understand about not bothering to keep on having to tell friends how you are as they all think it is impossible not to be better by now and it must be something else. Do you do any VRT exercises. I stopped, but then wonder if that is why I've gone down the snake on what we call a game of snakes and ladders!! This is such a good analogy for this monster. So, have started to do them again. Where are you based Wendy? Anyway, vent as much as you like on here - it does help. Hope you had a good Christmas and wish you and all of us, the most best 2011 with nothing but healthiness and happiness. Keep in touch.

Claire - you maybe right about a couple of tipples! My constitution isn't as strong as yours, but go for it and enjoy. I will try to bring in the New Year in style!

Love and hugs, Gloria xx


Thankyou for your welcome Gloria. I do a short amount of VRT daily, only which i have found on the internet. Have found GP and ENT pretty useless. As soon as i had the hearing test and had only lost a small amount of hearing in my right ear (affected side) found there really wasnt much they could offer me and that was back in March. Been trying to cope with doing research ie diet, not too much salt, plenty of water etc. Dont think it is a subject that GPs know much about. It is such a debilitating illness that is not recognised which makes it so much harder. Tried to go shopping with my teenage daughter in the sales today, had to come home as felt swayey! Mind you she can shop til she drops! Dont know about you but feel have lost a year out of my life. I gave up my job and are just about coping on my husbands salary, but not working does little for your self esteem but find i am so tiered just coping with each day, pathetic i know. Mine started after having a lumbar puncture for severe headaches i had been getting. First of all it began with vertigo and then developed into labs. Still get so much fullness and ringing in my right ear, just wish there was a magic cure for all of us. Happy New Year to you, hopefully can make it til midnight!!!! Since having this 10 o'clock seems to be my limit. Wendy. x


Hi guys Im new on here but not new to dizziness. Ive had this 'thing' 15 months and it was also my 2nd Xmas dizzy! Thing is I was doing quite well I still had daily symptoms but quite mild about 10 days ago I got a throat infection quite bad . I was ok on the first day and then a few days later all my really bad symptoms from sept 09 came back I couldnt function on Xmas day at all and since then Im not much better although my dizzness has changed and now when I lie in bed I feel a kind of rocking motion back and forth its horrible and waking me up. Im seeing a specialist in Leicester at the moment and am up there again Weds . Im also suffereing migraines and yesterday the whole bridge of my nose went numb . Im also tilting my head to one side all the time and cant stop doing it no matter what I do when I put my head normal I feel worse ! So what Im asking is has anyone had a bad relapse and then gone back ti where they were? Its really scaring me as its happened before but was over a lot quicker and ive never had sleep probs with this but the dizziness is keeping me awake . Has anyone got MAV on here that is what they think I have now on top of VN ?

Thankyou and hope everyone has a better 2011

Happy 2011 to everyone on here! Really hope we all see good improvement and final release from all this rubbish we suffer.

Wendy - You sound like me and a good many of us on here. Been to countless specialists, doctors etc and really the conclusion is - yes you have a vestibular disorder, do VRT because that is all we can give you and time, time, time! I gave up my job as well, but do feel the pressure financially as my hubby is the breadwinner. I want to be a bit more positive this year and look to seeing if I can get to doing something. A friend of mine owns a hairdressers and she has said I can go and help out whenever I want (won't get paid) but just to build up my self-confidence and see how a 'working' type of routine affects me. This has knocked my confidence for six as you just don't know how you are one day to the next. You are right Wendy, self-esteem goes right out of the window and I hate feeling that I don't contribute to the financial coffers! Have they diagnosed your headaches as migraine? I have been a migraine sufferer all my life. They did think mine was MAV, but have dismissed that. Have tried all sorts of awful medications to restrict my bouts of headaches, but I cannot take them. This is why they think I am taking a long time to compensate. At the end of the day I don't think anyone knows and it is a time thing. The fullness and ringing have diminished for me over time (I'm at 18 months now). The ringing in my ears came back this week, but that was the relapse after Christmas. So I do my VRT once a day, sometimes twice if I'm feeling positive!! Have been doing them all along, maybe they have helped - I don't know. To help with my flagging energy levels, I take a Berroca vitamin tablet every day. Managed to see in New Year - very quiet, and am having a lazy day today. Really hope 2011 will be a good one.

Sweetness - Happy New year to you. How wretched that you have relapsed so badly. They say, that relapses don't last as long or are as bad as when this first hits. I know others on here have said they too have experienced different types of 'dizziness' through out this long haul of suffering. When you see your specialist, you do need to ask for them to do the tests that will diagnose you as specifically having MAV. MAV, from what I have been told is a separate issue from labs/VN. They should give you medication to control the migraines and that then should help with the brain recompensating much quicker. All sounds easy when you write it down - in reality it isn't as straightforward. I'm still trying to find a medication that I can take and doesn't have horrible side-effects, but then I don't specifically have MAV. Have you tried VRT? I've said before, I don't think it is a cure all, but it does help. Let us know how you get on with the specialist next week and wish you a very much improved 2011.


Gloria, getting back slowly to the work place sounds like a good idea. Sometimes i feel ready, but on bad days couldnt contemplate it. They never found out what my headaches were as mri and ct scans came out clear. I hurt my neck a while before the headaches started whether that caused them. They were not what i call a traditional headache more of a wet feeling in the head as if i had water in my head, or sometimes would feel a draft in my head as if someone had opened a window. Sounds mad. Even the neurologist looked at me like i was talking in a foreign language. I wish i had just the headache to cope with now and not labs. God do i hate it as everyone on this site must.

Do you feel VRT does anything. I find the excercises so boring. I suppose anything is worth trying. I think with labs you could cope better if you were given a date where it would go, ie, 1, 2 or 3 years etc, just so you would have something to aim for. At the moment our lives are in limbo. I suppose we are all searching for an answer that cant be given.

Like you must stay positive, mostly do. Some days i find the frustration of not doing everything that i used to is the worst thing as have always been such an independant person, still am, hate asking for help. Find i am much less sociable than i used to be, but where i feel so drained from this i actually dont care which is awful.

Its so good to rattle on to people who understand, hope not boring anyone, let me know if i am!! Still have relatively good sense of humour, think we all need it.

All the best for 2011.

Wendyx

Happy New Year!!!!!!!!!!!!!!

Hello everyone Hi to Wendy & sweetness you all sound so familiar relapses & better episodes I have been assured that it will go & the better periods will finally outweigh the relapses til it goes completely!! I was told that mine could be MAV by the neurologist but ENT said labs so who knows I do VRT occasionally but it has def improved just extremely slowly I just keep thinking that at least by next Xmas it will be gone! Wendy I also feel i have lost a year of my life it seems that 2010 is all a blur its also the year I turned 40 so waiting for life to begin...

Well I did have a few tipples last night Gloria & only a few hours sleep so okay at the moment all tidied up ready for the next lot of visitors on Sunday then the B&B will be closed til Feb half term!! :)

Claire x

Hi Wendy,

You most certainly are not boring anyone. When I found this site, it was like a tonic in itself. I really thought I was going crazy, but the comfort I got from hearing about others with the same or similar symptoms gave me a lot of reassurance - even though I still felt awful! For me at the beginning as well as all the head swirly stuff, I was badly nauseous and my neck, head and shoulder muscles so sore and tight. They are now. It seems this blip for me has given me the tight head and all the muscle probs and not so much head swirlies. I do think VRT does help me. Coincidence or not, but when I stop after a few days I feel worse. So, maybe there is something in it. They are SO boring though. Mostly, I do them for about 5-10mins once a day. Have you seen a VRT physio? They do understand all what you are going through - more than the doctors. Do ask about getting a referral.

I am looking forward to this year, hoping that there will be further improvement on last year - which I could cope with a bit more. Like you though, the frustration of not just going about your day as we all did before is awful. We will get there though Wendy. You mentioned about your daughter - is she at home with you? At home is just me and my hubby - he can't wait to get back to work! I have found him too many jobs to do around the house! He is not Mr. DIY! Are you thinking of taking a holiday this year? We may go down to Devon or Cornwall soon for a long week-end just to get away from the same four walls is a tonic! Anyway, keep positive Wendy!

Claire - sounds like you had a very good time and haven't suffered too much from it - excellent news!

Speak soon, Love to all, Gloria xx


Hi again Gloria, i have two teenage daughters at home one who is 17 at sixth form studying for her A levels the other is 14. Sometimes too many hormones for my husband to deal with! He also is not mr DIY, more into his computers and a collector of vinyl records, drives me mad cluttering up the house with them. At the moment no hols planned but may change later on. Sometimes worry about planning too far ahead. Devon and Cornwall are a good place to relax, we are in the southeast, kent, so busy everywhere.

I havent been referred for VRT. Too be honest i havent been back to the doctors since about April with this. Didnt find them very helpful at the begining so have almost given up on them.

to Claire, welcome to the 40 club. I found life did start to begin at 40 with a new found confidence. Was good for a couple of yrs then wham bam was hit with this thing at 43! Hopefully you wont have to put up with this much longer and life will really begin for you, maybe just a couple of years later than expected! When i am fully over this thing im sure will appreciate life so much more as when i am having a good day i get so much pleasure out of the most simplist of things. I feel so sorry for some of the younger people who get this, must be so hard for people in their early twenties etc, when all you want to do is to be out with their friends etc.

As new year decided to try and start to de-clutter the house, Will wait for the girls to go back to school and rummage in their bedrooms, they dont notice that way. Tidy house, tidy mind and all that.

Take care, Wendy. x

Happy New Year everyone!

Well it hasn't started too well for me. Full of a cold as is almost everyone I know. My sister and her new baby seem to have it and now they are in hospital as the baby is ill. We are all hoping he is ok and will shake it off and it is just a cold/flu.

No exercise for me at the moment. I am just looking forward to normal dizzy stuff minus the cold, flu and breathing diffiulties etc etc that the last month brought.

Gloria really interesting about your chest, side and back tightness and that feeling in your legs. I wonder if mine will eventually move into my legs as they compensate! Maybe this time next year I will be complaining about leg muscle spasms!!!

Welcome Wendy and Sweetness. Both of you sound just like all of us long timers on here. Wendy like you I have kind of given up with doctors and have to accept this is a time thing and now for me to try and heal myself. I really hope we all get there soon!

Ash I am with you on the anxiety thing. I don't think the anxiety we experience is psychological, it is more our brains responding to the weird messages so it is triggered by doing physical things and there is nothing we can do about it except take it as it comes and try to ignore it. Did you say you had returned to work? If so, how are you coping?

Claire glad you had a nice new year's eve. You seem to have a handle on this thing and I am sure you will recover in 2011. Fingers crossed...

I really must try to go on a small holiday this year. I know that when you do something and it isn't too bad you feel a great sense of achievement!

Love Jemma xxx


Hi Wendy You should go back to the doctors though and ask to see a specialist. Im 24 life is tough with this Im like Im 84 not 24 and I cant see me getting better again . Im still in a relapse woke up to room spinning etc dont know what to make of it or what it is and when is it gonna go ! I could scream somedays I just want a life again x


Hi Donna, my heart really goes out to you. Its so cruel to be only 24 and get this. Work and social life must be hard for you. Can just about remember when i was 24 just wanted to be out and about all the time. The spinning is awful, hopefully that should go soon, im lucky i dont get that any more. Tough for you, but just be strong, it will pass! Sooner the better for you and everyone.

Sounds like you are also having a tough time Jemma. Having any sort of cold/flu really triggers feeling awful with this. Hope you and your sister and baby soon recover.

I think anxiety plays a massive part in this illness. Even on a goody day when out and about, there is always the thought that you could feel funny at any time. Its funny how everyone seems to mention a stiff neck. It must have something to do with it. Mine is stiff and cracks and creeks sometimes, maybe old age!!!

Just taken the xmas decs down, know its early but couldnt wait to tidy round. Weird how simple tasks like that can make you feel swayey must be all the bending down etc.

Take care, Wendy xx


Sweetness I have been diagnosed with MAV or VM Vestibular Migraines pretty much the same thing, after almost 2 years of labs/VN . TOPOMAX has been an incredible help as well as meclizine. Meclizine I take if I need it once and a while during the day if I feel a little off(dizzy/vert). Its been 2 months on this diagnosis and it has been a huge positive change in my life, the migraines are managable the vertigo feelings are minimal and both are easily handled with meclizine or even Excedrin Migraine if needed, as well as a little caffeine. Let me know, and good luck. Mike

Hi Donna, My heart goes out to you as well. Have they checked you out for Benign Paroxysmal Positional Vertigo (BPPV) which can follow labyrinthitis and treated with a positional maneuver or Migraine Associated Vertigo which can be a migraine process that appears with or without headache ,but can cause spinning, disequilibrium, rocking sensations, and even tinnitus. That is treated with diet and migraine preventative medications.


Hi again today has been a bit better but ive had enough of it in general . Trying to be strong and not think that this is it forever hard though. Tina Ive been checked for BBPV numerous times and never show positive for it although I think I have it but maybe crystals are in another part of the ear or something and not causing nystagmas? I have been diagnosed at the national hospital london with MAV and maybe VN too. I was supposed to have numereous treatment CBT , VRT , Medication. My Gp refuted the diagnosis and did not refer me for any of their recommendations! I managed to see a locum who took pity on me and reffered me to Leicester Royal infirmary at my request and now Im under the fantastic Mr Rea . They havent diagnosed anything yet but Im back there Weds so am hoping they have a treatment plan for me fingers crossed! I worry so much I have menieres and this is the start or something? Its such a cruel illness which takes away your well being and sense of contentment really . I find it very hard to relax now whereas I never used too. I miss going out for a drink with my friends and working etc xxx

Hi all, just popped on to wish everyone a Happy New Year.

Donna - I agree with Tina, it sounds to me like you have BPPV along with your labs. I suffered for months without actually knowing that I had BPPV, I just thought it was lab symptoms. The ENT doc at the hospital performed the Epley and although it didnt work straight away, after about 6/8 weeks the rotationary vertigo was gone. I am still left with the woozy dizziness but thank goodness that has almost left me now (she says with fingers crossed).

Something I discovered the other day .. I can lie flat again .. woohoo !!! Probably not much for some but I haven't laid flat for over a year !!

Well as you can probably guess I have remained quite good. I hate tempting fate by saying that and especially as I am suffering from a sore throat today and hoping that I haven't caught the bug that the kids got over christmas. The wierd thing is I have again started to suffer from anxiety and Claire I am once again listening to your tapes to help me get over it. I do feel that I can do more but my confidence is at an all time low. Very strange I know !! It might be the winter blues.

Gloria/Claire/Jemma/Ashley and all the new people - hope 2011 is a year of recovery for all of us .. we certainly deserve it.

Take care Shirley xx


Hello everyone, I thought I'd respond to some of you. This really is a horrid illness, mine started almost 5 years ago and has been particularly awful in the last year. I'm just recovering from an ear and sinus infection and although the pain is subsiding I still feel bad most mornings and my balance has been badly affected, even drying my hair can make me feel dizzy. Like a lot of you my ear is very sensitive to noise and I'm getting more ear hissing now and a lot of pressure, also at my last ENT appointment I was told I had more hearing loss. I was also told my MRI and all other tests were clear. I do have migraine related vertigo and BPPV. I am due to go back to ENT in Feb, but I'm not holding my breath for any great news. I will try to be more positive this year and I do make myself go out every day with my dog even though it is sometimes a great effort. I'm very lucky that I live in a beautifull part of the country - Cornwall, but when you suffer this dreaded disorder it really doesn't matter where you live, you still feel ill. As for work I gave up my job 2 years ago and although I'd love a job I don't feel consistantly well enough, unfortunately this illness is a great confidence yapper. Thankyou Gloria and Jemma for your personal interest it really does help to know there are people who can really understand how you feel. Hope all of the rest of the sufferers are getting some relief best wishes for the new year to everyone. Sue xx


Hi everyone..

i've been meaning to do this for some time now.. I left comments on here a while ago. (page 9) I had the damn dizzies/labyrinthitis for ages and i just wanted to post back when i was all better!

i've been absolutely fine for ages now.. and i remember feeling like there was no hope. Crying myself to sleep and thinking that there was something more wrong with me. Well, it took me about a year and a half to get to 100% again, but it can be done! so please don't despair.

You will get better :)

i hope this helps.... i know how all of you feel xxx

marita x


Hi guys Has anyone else found that their dizziness has changed? Since my relapse it has changed in that I feel a constant head pressure and the dizziness is different (I preffered the old dizziness) I had the mother of all migraines yesterday my head went numb and today have the most intense pressure in my head and just feel permantley dizzy all the time with exrta dizzy spells on top but its not the same dizziness I used to get its weird . My head is still tingling this morning and going numb on/off I just wanna know whats wrong with me Im finding it so hard to think straight through this fog. I was meant to start a new job today but had to phone the manager last night and explain my situation and that Ive had a relapse and I cant do the job shes wasnt happy and dont think she believed me. My world is a very scary place for me right now :'( x

Hi Donna, wanted to speak to you first sounds like its all a real struggle for you at the moment. Evertything you are describing is very familiar, I'm not sure how long you've had this (without trawling through all the posts)I started end of Jan 10. The dizzines & fuzziness has changed so much over that time sometimes unbearable & other times manageable (as it is mostly now). I had MRI scans & lots of tests to rule out anything sinister as i was convinced it was something terrible. Once I had got my head round it all & read up on it alot I was able to cope so much better. I do feel I have a handle on it now but it has taken a long time to get like that and even now on bad days i still have those dark thoughts that maybe it is something more serious! when that happens I just sit quietly & remind myself of all the things I know of it & think of the times that I felt much worse to remind myself I am getting better very very slowly. I really feel for you being so young, not that I am old at 40!! Just try really hard to stay positive & keep it under control. I am lucky that I dont have to work like a few others on here working would have been very difficult over the last year. One more thing dont know if its the same for you but my dizziness is very hormone lead, in that 1 week before my period my symptoms get much worse & the migraine type headaches begin usually lasts about 10 days or so. Anyway try not to be scared & we all do understand exactly what you are going through :)

Wendy, 40 has sucked for me so far!!!! I know that when I feel 'normal' again life is going to get so much better. I took my xmas decs down yesterday too just looked at all the dust left behind!! My girls are 12 (13 in March) & 11 so hormones have started kicking in for them now!! They have been very good over the last year with me not being myself I have also tried so hard to hide as much as poss from them as I experienced the awfullness of growung up with a very ill Mum (MS) & dont want them to experience any of what I went through which is good in a way as it makes me act normal & not mope around too much feeling sorry for myself! I have always been a very busy sociable person but this thing has changed me, without a doubt although the last few months more of the old me is creeping back much to my friends relief I think they were all quite worried at one point, its hard not to get very down isnt it?? Anyway onwards & upwards I am more positive & I KNOW it WILL go soon.

Gloria yep I got through it all, so much for a quiet Xmas I am quite exhausted now but it has been fun. Will be resting for a feww weeks as much as poss now though!! Hope you are okay

Jemma I realy hope your little nephew & sister are okay, I cant believe how many people I know who have been so ill with this flu, so far so good for myself & my family although my sister had it really bad before Xmas & ended up on steroids. Love to you & them x

Shirley hope you are okay too

Ashley hope you are getting less anxiety/palpitations it all comes with the condition mine is under control now & I've stopped checking my pulse constantly (like I was 6 months ago!!) I stil get the odd wierd heartbeats/palpitations but I just try & ignore them Then they dont get worse I do find it worse when i am feeling dizzier it is all connected to the whole 'fight or flight' theory of anxiety so when you get dizzy the body goes into panic mode as its not 'the norm' try relaxation cd's or even hypnosis it helped for me :)

To everyone else lets hope 2011 is a better year & there arent too many other members of 'The Sharp Blue Crew' Claire x

P.S Thanks for posting Marita. I hope I can be one like you soon too & say I am 100% better. We all need positive posts too :)


Thanks Claire Ive had this since sept 09 but my symptoms did get better only to come back with a vengeance Xmas eve its very scary when that happens esp when the dizziness changes too . You get used to the way u usually feel and when it changes again its frightening as I wonder if Im getting worse? Im due on my period this week so that could be why im not improving much . Im off to Leicester tommorrow cant wait to see what they say im so ready to kick this thing now 2011 here I come (she hopes ) lol x


Hi donna, good luck with your appointment tomorrow. Lets hope you get some help and good advice. Let us know how you get on, any magic cures they may give you, pass them on!!!! If only.

Claire, totally understand what you mean about trying not to show how awful you feel sometimes in front of the children. I think they sense when you are feeling bad, i try not to let on, but if im quiet they just say is it your labs?? Bless them. They have been so good and understanding, mine are slightly older so prob easier for me. I hate the fact i cant do some of the things like going to the cinema with them, they went to Oxford Street the other day, just knew i couldnt cope with that. Glad you are nearly getting back to your oldself. Think we will all be better people from this because we will appreciate the most simplest of things without the wobbly feeling!

Hope everyone else is doing ok, or as ok as you can be. I seem to have the hissing in my ears back now, not had that for a while, its weird how quick the symptoms change from day to day. Gone back to sleeping with 3 pillows had got down to two but found that the hissing was worse last night when lying flatter. Woke up with stiff neck!!! You really couldnt make all these symptoms up if you tried. Weirdest illness ever. The positive thing is that we all WILL make a full recovery (PLEASE). Well done Marita, wow you must feel fantastic to be free of this. Cannot wait for the day when i can say that, think will put it on the local news, no make that the national news!

Any way take care everyone,

Wendy x

Happy new year everyone!!

I hope to god that all of us can leave messages like marita by the end of the year.

Claire - I'm sure you are on your way to a full recovery; you seem to be coping really well at the moment. I've got everything crossed for you! My anxiety is quite bad again at the minute. When I'm left alone I start to feel really panicky and I get scared to move in case it sets of the swirlies. Totally ridiculous I know! Are you ok travelling as a passenger now? It still can make me feel a little queasy and dizzy. I'm hoping it will go because I travel so much with my job.

Jemma - so sorry to hear about your nephew. I hope he is getting better. I haven't gone back to work yet but I going to start working part time from home first of all to break into it slowly. My work have been really good and have paid me my full salary for 6 months but that has come to an end and now I have to try and claim from works insurance company. I just want to get back to work though because I am so bored but I know I wouldn't cope with it at the minute.

Donna - I am 24 also and feel exactly the same as yourself. Many times I've cried over the fact that my life appears to be ruined but I promise with time you learn to cope with it better. Dont get me wrong i still get down beat about it, but i have glimmers of hope now. I hope your appointment goes welltomorrow.

Gloria, Shirley and Wendy - hope you are all well and starting 2011 on a positive note!

Love to you all

Ashley xx

Happy new year all!

It's been awhile since my last update, and I just wanted to let everyone know that I haven't abandoned you! It seems like all is pretty much well from what I read. I hope that all of you continue to improve.

Where do I stand? Well, as you may or may not have read, I had a CDC positive test for Lyme Disease. I am in the middle of treatment from my GP until I see my LLMD at the end of the month. My treatment is very similar to what Brad started with for his LD treatment: Doxycycline with a Flagyl pulse. The medications are pretty brutal on the stomach at first, but I have gotten used to them.

As for my progress, the drugs haven't gotten me quite so well as fast as they did for Brad, but I do definitely see some progress. Pretty much within the first few days of taking the antibiotics I noticed my ear fullness go away. It's been pretty much gone ever since and when it does come back it's very, very minor and doesn't last very long at all.

The "swirliness" on the other hand has been more stubborn. There is some slow progress here, but it is taking awhile. The good news is that I can now sleep on a single pillow (i.e. not upright) like a normal person! Also I actually have moments almost daily now where I feel nearly completely lucid and normal. The bad news is that stores are still a problem for me. If I am in Target for more the 5-10 minutes, I get all woozy. I do feel a little bit better there, but I think that will be my measuring stick for my progress in this area.

Finally the tinnitus pretty much remains unchanged. There are moments when it seems to fade, but it always seems to bounce back up to its normal volume. I am hoping one of these days it will permanently fade, but I think that it will be the last thing to go.

I'll keep everyone posted on my progress in case anyone actually cares. :)

Hoping everyone is well,

Chuck


Hi there Little Donna(24)

My heart goes out to you sweetheart. Just remember what everyone on here tells us IT WILL END ONE DAY. You must know in your heart it to be the truth. I'm into colour therapy. I find wearing as much pink(uncondtional love) and green( healing) makes me feel a little better. I know I sound like and old hippie but it can't hurt. You also need to laugh at yourself as much as you can. Just try and be happy ,love! Are you able to go to work with all you dizzies? Keeping busy also helps.

Love to you all Aussie Donna xoxox


So its 13months ive been rocking 24/7 since the day i woke up with the room spinning im still waiting for the day ill feel the ground is still or this problem becomes temporary (a sign im recovering), i would donate all my money to charity if it meant curing me off this horrible disorder but when your sick like this you realise not even money can help you and appreciate how important your health in comparison to material items , ill do anything to get back to normal and pray every day i will return to the state i was before this horrid condition, i swear ill feel reborn everything will be great, the simplest chores such as cleaning the house will seem a pleasure.

My Dr has put me on Sturgeron 3x a day for 3 months in an attempt to eliminate the vertigo/ reduce while he recommends i excercise im told its quite effective at treating peripheral vertigo im still yet to see results but have only been pursueing this treatment for 3 weeks, the next route of course is Klonapin which is also effective at treating rocking vertigo in the meantime im trying to keep busy, but this condition seems to consume me. Its a bummer to feel sometimes like your life is over, im probably the youngest person on here to contract this problem was 19 when it started but i guess god has a reason for everything.

Hi all,

My goodness so many people on here. Great to hear from everyone, although sad that some are still feeling really bad. Hold on in there - you will get better, Although I know I'm still not right, I am a whole lot better than I was a year ago. The progress is so so slow you don't notice it until you reflect back quite a few months.

Jemma - so sorry to hear about your little nephew and sister - and you too who have all been suffering with this wretched flu bug. I sincerely hope things are much improved and he is out of hospital. Has this set back your labs symptoms? Love to you xx.

Claire - so very pleased to hear you are coping really well and apart from that time of month, you seem to have got a handle on this whole nightmare. Do you think you are near that 'winners' square on the snakes and ladders board yet LOL?!!! Bet you can't wait until your holiday in May? We are just having a long week-end away in Devon at the end of the month - not sure about what to do later in the year. Not sure we can afford anything much this year - especially after Christmas!! Keep doing well xx.

Shirley - how lovely to hear from you again too - have often thought about you. Good progress for you too. I know what you mean about the anxiety issues. That and all my muscle spasms (especially neck and shoulders) seem to be my bug-bear at the moment - some swirliness, but not horrendous. Although as you say you are afraid to tempt fate! Very happy 2011 to you xx

Sue - sorry to hear you are feeling so down at present. It is the most wretched thing. If we all knew a time frame, then that would help us all enormously. Are you still taking the Verapamil? Did it do any good? I also gave up work and really feel a bit useless, but know I can't commit myself to anything permanent just yet. I am very envious of you living in Cornwall. We spent 2 lovely holidays there last year- first just outside St. Ives and then last Autumn we were in seventh heaven in St Just-in-Roseland. I want to move there. Are you north or south? As you say though, it doesn't matter where you are, when you feel rough, you feel rough. Do try and keep positive - this year, apparently, I have been told, is going to be a very positive one for everybody. I'm hanging onto that. Send you hugs and all good wishes for 2011.

Ash - know about the panicky feeling. I've never had such a thing before and always been 'normal', calm and controlled. Symptoms ebb and flow- each time though they are less severe, even though still not nice. I went to a health shop like Holland and Barrett and bought some Valerian capsules. I found they did help. You can also buy it in a tea-bag formula. Tastes like weeds, but it does help! Don't go back to work until you feel you can cope. Even when you think you will be ok, the slightest amount of pressure will put up your stress levels. Maybe,start gradually doing part-time at first. It sounds like you work for an understanding company. Just don't be pressurised into returning too quickly. Sending you big hugs for 2011 too.

Wendy - lovely to hear from you. The pillow thing for me has been quite hilarious when I think about it - although haven't felt like laughing. For years I have always had 2 pillows. When this thing first hit I had about 6!! Took me some months to get down to 3, then 2, then back up to 3/4 again with all the 'blips'!! I had to keep them under my bed as it was no use putting them away, as the number I needed to use changed constantly! Should have taken shares out in the pillow company, I bought so many! You are right - you couldn't make up some these odd, strange symptoms. Keep positive xx

Donna - hope you get some good and practical news from your appointment today. Because this thing doesn't recover like any other illness, and the symptoms constantly change, you have no idea what is happening or whether you have something else altogether. As you are aware, you are not alone and we are all here to support you. Be positive - it takes time, but things will improve, even when you have blips along the way. My neighbour's friend had this when she was your age. She is now 35. It took her about a couple of years to get out of it, but it diminished and just disappeared. She has been fit healthy, now married with 2 children and hasn't had any relapses. You will get better.

Marita - THANK YOU for your inspirational message. Good health to you forever.

Chuck - great to hear from you too. It seems even when you have been diagnosed with Lyme, it still takes a while to recover. At least you have proper medication and can see changes, albeit slowly. They will happen. Very Happy New Year to you and your family.

Finally to Aussie Donna - old hippie or otherwise - good on you. I bet you look very colourful and that certainly cheers everyone up. Donna - are you near the flood area in Aus? Such an awful disaster. You sound like you can instil positiveness in us all. Do keep in touch. Don't know how long you have been suffering, but any helpful hints or tips - we could all use them.

Love and hugs to all,

Gloria xx


Thankyou everyone! Gloria thankyou that makes me feel better so much Im scared Ihave Menieres which worries me . Well I might aswell have sat and spoke to a wall ! ENT was a bit of a joke tbh dont know why I bother . Hes saying its BBPV although I have no eye movement which I was told wasnt possible in London?? He's unsure on the migraine asking me if my diet is helping it Ive been on the diet a month now and no its not helping. I ask him what to do Im going through hell please help me ! He doesnt seem very clued up on MAV at all maybe Leicester dont believe in MAV im not sure he siad it MIGHT be causing my symptoms. In the end he had to go and speak to Mr Rea and ask what to do with me while Im sat waiting taking an hour to get there and I get 5 minutes of his time . He then concludes I have to go through the torturing tests again to see if I have any damage. Im so confused they wont rule anything out or in Ive had this 16 months now and Im so angry I want it to go away and I dont wanna do them tests again GRRRRRRRRRRRRRRRRrr


Anonymous Did you see a Neurologist, (I am unfamiliar with Englands Medical set up) or can you. That's where I received most of my help as far as MAV and medication, its been a complete turn around and it is somewhat of a new diagnosis so that might be why he is not buying it. Good Luck and keep pressing forward. PS. I did all the tests twice as well before they diagnosed MAV. Mike

Hi Donna,

I've had 3 lots of tests done. When all this started I went to see a private specialist as I was so scared and worried. Tests normal, although headaches (I get migraines) not helping for things to improve. (So I'm told). Second lot of tests done up in the main hospital in London - outcome - normal and within range (whatever all that means) definitely migraines, they said. Saw another specialist - NHS, near where I live - no not migraine related vertigo, but not helping recompensation. By now I am so so confused. Just had the outcome from the latest round of tests - right ear a bit dodgy - always was told left! Am now awaiting the Rotational Chair test (how medieval does that sound!). Saw someone who told me all the diet stuff, give up caffeine etc. I have given up caffeine and I do think that has helped to be fair. Basically, one person says one thing, then another contradicts it all. Out of all this and all the people I have seen, it is a time thing, do VRT, get as much normal activity and exercise and sit it out. Donna, the most help I have had is from the VRT physio therapist. I'm waiting to see another now, but the waiting lists are so long, it will be another 3 months!! Also, am being referred back to a neurologist to try more meds to control my migraines. Ish - who posts on here took something called Sibelium which helped. I have the meds, but need to talk to the neuro first before I go ahead and take it. Donna - it is the most awful thing - you must believe you will get better. Certainly get to see a proper VRT therapist - who will confirm your BPPV and do the necessary manoeuvre to correct it. It might take a couple of goes, but that does work if you have BPPV. She/he will definately tell you. Out of all my appointments, the only thing the specialists seem to confirm is that I have or have had a vestibular disorder and VRT is the only route. Ask the ENT to refer you to a physio. Keep heart.

S - did you get to your holiday in Thailand over Christmas? You do sound down at the moment. Having just told Donna about Sibelium - did you pursue that with your doc? Also have you tried Serc (betahisteine hydrochloride)? Take whatever it takes to make you feel better and more upbeat. Think you have been brilliant to cope as you have. 2011 has to be the year for you to see real improvement and recovery. Keep us posted.

Love and hugs, Gloria xx


To everyone on this site,and especially Gloria- you have been so kind. I'm feeling better after my ear infection but still find it difficult to do certain head movements eg looking up and back, or twisting my head as if to look underneath a chair. I am feeling better and really hope that this feeling will last. Although I have suffered with this for nearly 5 years, I have had times when it has gone, so there is some chance that any time soon I should get reprieve. I really feel sorry for the younger sufferers, I can only imagine how my own children would cope, as they are a similar age. I have been looking back at some diaries recently and realise that although the main symptoms of off-balance, neck and shoulder pain etc etc are still there it does change and new symptoms emerge as old ones go, maybe thats all part of this mystery illness. Gloria - in answer to your question does the Verapamil work, yes I think it helps, as when I've forgotten to take it I wake up feeling like I've drunk a whole bottle of wine! I am feeling more positive on the whole and yes sometimes being busy does help, as does the company of others, although sometimes all of those things seem to make it worse. Sometimes you just feel too poorly to be social or busy and yes it is hard on your family, you do get fed up with saying you feel dizzy, and I'm sure they must get fed up hearing it. Well I can only hope we all get relief from this soon or failing that a more accurate diagnosis and health care professionals who are helpful and interested. Gloria, Cornwall is lovely; we live in Helston. I hope every one else is starting to feel better or at least know that we all understand what you are going through. Best of wishes to you all Sue xxx

Hi all

Well I am recovering from a nasty cold/flu. It has of course set me back with the fatigue and off balance feelings but I am hoping as it goes I will improve. My sister and little nephew are out of hospital and recovering so fingers crossed they are ok. So many bugs about this time of year. I am glad I dont have to go out much as I am sure I would get another. My mum has had three lots of it and still has 24.7 tinnitus.

I had the results of my ECG and blood test which were normal so can only assume that the heart/chest pain was due to either the exercises I was doing or another part of compensating from this. It has improved this week but I have done very little activity since I got flu anyway.

Donna so sorry you are having such a bad time lately. I had a bad setback with a change in the type of dizzines after about 5 months of this. It really scared me as I thought I was going worse too. The only thing I could think that was positive is that if it can change (even for the worse) it is at least capable of changing and that means for it can change for the better too. Echo what Mike said about seeing a neurologist or a neurotologist rather than an ENT. I have seen 4 ENTs and they were all useless with this disorder, totally clueless about it and how it affects you in every way. I have got the number of a VRT specialist which was recommended to me by my osteopath last year. I did speak to her on the phone but as I then got treatment on the NHS I did not go to see her. She is based at the Cross Clinic in Lymm, Cheshire and sees people privately for about £50 per session. I have thought about making an appointment to see her because she sounded like she knew her stuff. Apparently she trains other therapists in vestibular disorders and she told me that anyone with the migraine gene will take longer to compensate because they finder it harder to reprocess the balance information. If anyone wants her number I can give it to them.

Gloria like you I felt it was my left ear that was the problem but the only very minor things they have found have been with the right ear. How strange! Like you say it is just a time thing I think. I am really hoping you are right about 2011 and it is a positive year for all of us.

Ash I hope you manage ok with your job, remember dont overdo it as it can be tough. I really can empathise.

Everyone else hope you are all ok xxx


Yeh Gloria i had a great holiday, it really hits you when you get back and realise another year of terrible swaying that's probably why i feel down sometimes. My doctor prescribed me with Stugeron( cinnarazine) sibellium is a stronger form of cinnarzine called flunarazine so if stugeron is positive in helping me then the doc might try sibellium. ive tried serc but it had little effect at the start of this condition.


so i'm moving to Colorado this spring and if i still have lab by then does anyone thinks/or knows Medical Marijuana will help? I'v never really smoked it but if it were to help i would get a prescription.


Hi everyone, hope all ok.

Gloria, how did you ever sleep with 6 pillows! You must have been tipping forward at night. I had max of 4 to begin with, but so uncomfy. Only slept with 2 last nite, as ear hissing and popping slightly better, but enough to be constantly aware of. Very sensitive to noise at the moment, my husband has a cough and really hurts my ear, not his fault but want to say cant you keep the noise of your cough down! Noticed the kettle, tv just seems so much louder. Hope you are coping, am really sticking to my VRT, have done it twice for 2 days. Found one on You Tube, to walk up and down the room but walking in a figure of eight. Have not tried that one before. Would try anything at moment.

Claire, are you enjoying the peace now the girls are back to school. Mine have struggled getting up in the mornings as they tended to lay in over xmas hols. Back to the school run and packed lunches etc. hope you are still making good progress.

Donna, sorry your appt wasnt great. I think we all expect answers that the doctors dont seem to have. It really is a weird illness with no set pattern to it. I think you have been coping well, and make the most of any good days you have, im sure in time there will be many more to come.

Ashley, must be hard for you to being only 24. How did yours first start, was it after a cold? Can understand you wanting to go back to work, dont feel any pressure until you are ready though as this thing is really draining. Hope you have a good circle of friends that support you. Do you manage to go out with them. Bars and clubs must be so noisy for you. You sound like you deal with this illness really well. Being positive does help.

Jemma, Hope things are improving with you after your cold/flu and hope you sister and baby doing ok. Does your mum take anything for her tintus. I read Vitamin B and ginkgo biloba are supposed to help with that.

Sue, sorry to hear you have been suffering for a long time. Like you am having trouble with coping with noise and hissing in ear, its worse than its ever been. I would love to go back to work, really miss the routine of it and the social side of it too. I would just find it too much at the moment. You are so lucky to be in Cornwall, but like you say when you dont feel great, doesnt make much difference.

Oh well, better go and face the supermarket for the weekly shop, at least can hang onto the trolley if feel swayey. The joys of being a housewife!

Love and good health to all

Wendy xx

Hi all

Just a quick question today... Has anyone experienced feeling their pulse in the back of their head when lying down? I've been experiencing it more often at the minute and it is starting to worry me a little!

Thanks

Ashley xx


my firend just got told she wont ever fully recover just get used to the symptoms from VN but she wont go back to her normal self! She only has 20% damage in one ear OMG thts so depressing is this true? x

Hi all,

Have just written loads and the thing crashed on me. So start again!

Jemma - really glad you are feeling better and that your sister and nephew are out of hospital. You didn't need all that worry on top of everything else. I'm sure you'll get back to how you were, but for me, it is not the off balance so much as all the odd muscle spasm stuff. I've still got a tight head, my neck muscles are awful and the muscle underneath my diaphragm have just tightened. Don't know why - not as if I have done anything strenuous - even though I should LOL!! As you say,maybe it is all part and parcel of this thing 'progressing'???

Sue - thank you for your lovely words. Thank goodness we have each other on here who so understand what we all go through. I was interested to read that you feel dizzy when you turn your head or look down as if to look underneath a chair. My VRT therapist gave me a different set of exercises a couple of months ago to address these same issues. You may want to try them It is boring - you are so right because they are really repetitive. I do them once a day for about 5-10mins. They said I should do them twice a day. If I'm being really really good (not often) then I may do them twice. Anyway - one is to stand near a wall ( about 2 feet away) with anything on it - pictures patterns etc. First - look up to the top of the wall and focus on a spot, then straight ahead at something else, then at floor level. Look up, middle and floor, focusing on each thing - do this for a good minute. Then do the same thing, but this time look up to the left, then middle but to the right and then floor back to the left. (Zig-zag). Again for a minute - more if you can or maybe do it a bit faster. Then I hold onto the end of the kitchen table, bend down to look underneath it, turning my head to the left. Straighten up and then bend down and look under again. I do this for about 8/10 times (you may only want to do 2/3 at first). Then after each set, stand up and look ahead and focus until any dizziness has subsided. Do the same but on the other side i.e. bending down and looking to the right. Then I have to stand on the spot and turn 360°, slowly focusing on four corners of the room. Then speed up a bit. Then do the same turning around the other way. At first, because it makes you feel a bit worse, you have a tendency not to do them Do only enough to the point of feeling dizzy. This may mean only doing 1 or 2. Progress slowly. It has helped me and I do notice when I don't do them - which I didn't over Christmas and felt dizzy again - so maybe there is something in it. Anyway, positive is the right attitude Sue - and now I'm really jealous - Helston. How beautiful. Can't wait to get back down that way again. I just love all the rugged coastline. I feel I can escape. We do want to move this year, but still can't come down your way just yet as my hubby still is working (has to) to support me! Our intention is to eventually though - and get a lovely dog too. Keep in touch Sue xx. Ash - I had/have get all sorts of weird pains, tingling and sensations on the back of my head and could also hear my heart beat, but that was when my ears seemed quite full and blocked. It does go.

Love and hugs to all, Gloria xx


Gloria Does sandie still post here ? I saw some of her posts from previous pages and saw shes had this 5 years! I hope shes doing better. You sound like your doing well with your VRT therapy gloria x


Ashley- i belive that is high blood pressure from Anxiety which is normal. i get it aswell.


Hi YALL!

I just found this website THANK GOD!

anyways i have had this wierd Labyrinthitis for about 3 - 4 months now and my Doc said the vertigo would go away after a week and it did but she also told me that the dizziness would go away after six weeks, and it hasnt gotten any better. i'm just wondering if this is normal to have dizziness for so darn long like this.

Thanks yall Steven


Dear all, Hope you are all feeling a little better after the weekend. Gloria thankyou for the exercises, I did go a little mad and tried them all, only to regret it, still, I'm not going to give up and did just the first few - will keep you posted! Steven, sorry to hear you're suffering, have you been back to the Doctor had tests etc etc? I really hope the rest of the "Dizzy Folk" on here are feeling better. Love Sue xx

Hello everyone,

Well I try not to post anything negative on here these days but have slipped so badly down 'the snake' that I need some reassurance myself for once instead of giving it out!! Dont know if I'm coming down with something (almost hope I am) or if I've done too much lately? I have had the dizzy/swirly/heavy head back again with severe headaches. Last night I had to go to bed at 6pm for a couple of hours (not done that for about 8 months)my head was so swirly & painful & full of pressure my ears feel full & sometimes painful. Oh dear doesnt sound good does it I just hope its not a full relapse & just a blip!!! At the end of this month it will be my 1 yr anniversary with this thing. All the shaky/vibrating feelings have come back too in my head & legs most wierd it like its all started all over again. I know I have to be positive & just think of it as a blip & in a week or so I will see more improvement!!!

Anyway enough about me how is everyone else. Jemma glad all your ECG results were okay & hope you are all recovering from flu, did your ears/head play up more when you had it? Does anyone else get the ear stuff going on before they come down with something?

Gloria We overdid it didnt we? I though I was fine with all the rushing around over Xmas I ddint need to sit down & rest of course I can fit 2 more in for dinner etc etc Maybe this is my punishment for having a lovely Christmas, how dare I assume I could have a nice time without suffering the consequences. Hope your neck muscles are loosening!!

One thiings for sure WHEN I finally feel 100% I am really going to go out & make up for so much lost time!!!!

Steven welcome to the site dont take too much notice of my ranting I will be okay again next week back to positive thinking. Hopefully you will be one of the lucky ones who recovers within a few months not everyone suffers for as long as some of us on here. My vertigo was only momentary then the continual dizziness/head fog/pressure comes & goes in waves & cycles after a few months so you get better days & weeks than others. That seems to be the nature of the beast until it finally disappears.

well bye for now hope everyone else is okay :) Claire x

hi everyone

Claire just wanted to reply to your post. I think I am over the cold/flu thing now and YES it definitely affected my labs symptoms. Makes you more woozy, off balance and very tired. As the flu got better, the other stuff improves. Sorry to hear you have had a relapse/blip. If you are coming down with something then that is probably why and even if you're not I am sure it is just a blip and you will improve in the next few days or weeks back to where you were.

It is so true that this does not clear up in the normal way. Good days, worse days, relapses, strange symptoms but hopefully overall improvement (very slow).

Steven it is normal for anyone with a vestibular disorder to suffer dizziness for a long time as we have all found out. Just hang on there, do what you can and you will start to see some improvements.

Wendy I will let my mum know about the suggestions for tinnitus. It is a strange and horrible condition. She is going back to the docs today. hope you are doing ok?

Donna - Emma from the Ilia/Emma Labs website tol me that it took her 3 years to turn a corner with this and even now she is still not 'normal' but she is a lot better and leads a normal life and can live with the condition. When I heard this I freaked out but as time has gone on I have tried to come to some acceptance that this might never go totally for everyone but it should improve and hopefully for most of the time we will reach a point when we can forget about it. I do hope you are feeling better and more postive this week.

Gloria how are you? Strange about the diaphragm tightening isnt it! Mine has improved since I stopped exercising. Now got to decide if I start again and risk it going worse...not sure....

take care all

Love Jemma xx

Hi all,

Welcome Steven - like others have said - the dizziness is part of the aftermath of labs and does take a little time to settle. Longer for some than others. You have to be positive, try to carry on with your normal day to day stuff and know it will diminish over time.

Claire - OMG - you see - how mad are we. Think we are feeling better -go about our day as we used to and not think we will suffer for it. So, the moral of the story is we HAVE to fit in some R&R. V. difficult when it is not in your nature to be like that and I'm not. Anyway, started Pilates this morning. All about core muscle stuff, breathing etc. I can see the point of it and the benefits, but it is a bit slow for me. I love a bit of energetic music to exercise to. So we'll see. Muscles and head still off, but better than I was a week ago. Just so want to be rid though eh?!

Donna - haven't had any posts from Sandie for ages. She was having much longer and better periods and did think that she was really coming out of it. So I can only assume - all is well. You read of people having this for ages and ages and it scares the hell out of you. Donna you are young and everyone is so different. If you take all the people who have posted on here, particularly earlier - and haven't reappeared means most people get over this really quickly. Keep on in there.

Sue - don't go to mad. It is so easy to do, as you think if you do loads then you will get better more quickly!! You will feel a bit off for a few days, especially if you haven't been doing anything previously. It is quite amazing how quickly the brain adapts, but you do need to do them every day. I have to change the location of what I'm looking at as apparently not only does that help the brain but also helps my boredom threshold! Good luck and onwards and upwards as they say.

S - glad you had a good holiday. I didn't know that about Stugeron being related to Sibelium - very interesting. Any good signs yet?

Wendy - the figure of eight VRT I have done. Claire on here gave me the exercise. It is good. As you keep walking around and around it does make the brain a bit swirly. I've progressed onto the turning around on one spot for 360 degrees now. I think if they said stand on your head and do somersaults - I would try in the hope LOL!!! Keep doing well.

Jemma - I just accept all weird symptoms as related to this now which I'm not sure is a good or bad thing. Take your exercise gently - as I said it is so easy to be too robust and do more harm than good. At least we are moving around a bit more this year than we were last year.

I have had a wager with a friend of mine. When I was younger I used to waterski a lot! We are both going to do it again this summer - in June. This has given me a good goal to reach in terms of getting fitter. I have something to aim for. I feel quite good about it - we'll see as time goes on and whether I stick to my routine or not. It was 10 years ago since I last waterskied!!!! See - the madness has returned. I wish I could say that I made this bet on the back of a few too many glasses of wine. Not the case though LOL!!!!

Love and hugs to all, Gloria xx


Hello to everyone, Claire you are always the positive one, but seems you now need some looking after, hopefully you won't be down too long, you may well have caught a virus which has attacked your weakest point. Give in to it as much as you can, difficult with a family to look after. Gloria I have been going to pilates for a while now and although I find some of the moves difficult when the dizziness is bad, I just adapt them to suit myself. Love to all of the other members, this really is an exclusive club that nobody wants to join Love to all Sue xxx

Hi everyone, Thanks for your kind comments a few weeks ago. I have been meaning to post again but of course it's been the silly season! So I had a few bad weeks - went and saw my vestibular physiotherapist as she had been the only one who knew what she was talking about and just said that unfortunately people do go backwards with their compensation. She did all her tests and said that everything was still consistent with vestibular problems. So I was relieved at that as my biggest fear was that it was something worse. Then I got better for a few weeks and we had my husband's family come and stay for Christmas - which of course was really busy so went downhill for a few days after that again! Things are pretty much back to normal again but I am always so conscious of every little thing going on in my body and worry about worst case scenarios! Anyway I know that I just have to try and keep busy and stay off the internet! to not think about it. All the best to everyone Cathy


Hi all Jemma that is reassuring I do know that Emma still has symptoms I have spoken to her before and couldnt believe it I was under the imprseeion everyone gets better but I really hope shes doing ok .

Just wanted to ask does anyone take anti-depressents for this? Im considering it at the moment as i have been crying a lot. I go to bed most nights hoping its gone and it never is of course. I wake up start the day and am like I have a mountain to climb today and am happy when I just get through the day and then I wake up and it all starts again after 16 months of this Im still anixous and panicky about what my head will be like today . This condition is very frightening and isolating isnt it .

Thanks everyone for answering my questions x


Hi everyone, hope everyone coping ok. I still have continual hissing and fullness in my right ear. Its begining to make me feel so irritable as you can hear that 24/7 plus everyday noise around you, feel like screaming with it. May even have to have a trip to the doctors, will do anything not to though.

Claire, i think what you said in an earlier post hormones deff play a part in the balance issue. I know a few days before my head gets very fuzzy and deff feel more unbalanced. Im sorry to hear you are having a bad blip. It prob is just the after affects of christmas as you were doing so well before. Also i find when my routine changes such as the xmas hols, it affects me for the worse so fingers crossed after a few days of taking it easy (not easy i know), you start to see an improvement. I have got parents evening at the school this evening, dreading it as i know this is my worse time of the day. I am much better earlier in the day. Oh well deep breath and all that.

Gloria, thanks for all the VTR tips you post on here for everyone, you are quite an expert, perhaps when you have recovered could be your new career. being a VRT specialist, (you would have plenty of experience) The water skiing sounds like a good goal for you to focus on. You have a few months to fully recover!

Steven, welcome to this brilliant site. I have only just started posting on here although have been suffering with this for just over a year. My vertigo went after about a month, and like many people am left with the feeling of being unbalanced. Its seems like everyone, you start to make a recovery and then wham seems to come back just as bad. the only good thing we know we will all fully recover one day.

To Jemma, Donna, Ashley Sue and the rest of the gang hoping things all ok with you all.

Love to everyone,

Wendy. X

Hey all

Well what a couple of days I have had! I had a massive leak in my apartment!! ARGH! I got out of the shower to find water pouring through my bedroom, hallway and master bathroom ceiling. I live in a duplex apartment and basically my pipes had blocked causing the washer to leak all over. The boyfriend was out so I was so stressed trying to sort everything out. By the evening i had such a bad tension headache and neck pain which of course caused me to feel more dizzy. Yesterday I didnt feel too bad and thought I had got away with it effecting me too much but today I feel really off. I had a dream that my dad was doing 360 degree spins in his car and I was trappe din it screaming to get out because i felt so dizzy. I immediately woke up at this point but i wasnt dizzy at all so was my head really spinning or was it just a dream? It did make me feel really anxious and from that point on I have felt unwell all day. I was only thinking the other day that I have not had the bad tingling in my head and body for a long time and today guess what has come back?!! This symptom really makes me feel awful because I get really bad hot flushes with it. Anyone else experienced this? I hope I am not having a relapse :-(

Wendy - thankyou for your kind words but i don't think i do deal with it that well. I cope in certain situations and avoid all others which is probably not the best thing to do. I got this horrible illness after a water infection! unbelievable eh?

Jemma - glad you are feeling a bit better. Am I right in thinking you gave up your job due to this illness. Is that because it made you have a major relapse? I have my work coming out to visit tomorrow to discuss returning part time but I don't know if I can cope with it. Have to pay the bills somehow though!!

Claire - so sorry you are feeling rough again. I have had some old symptoms return these past couple of days. I think it is just the result of us doing too much and getting ourselves a little stressed out. Lets hope we improve again quickly.

Everytime I get this tingling and hot flushes I can't help but think I have something more serious. It really freaks me out. The doctors have told me I don't have MS but at the same time they have never been able to tell me what causes it.

Gloria/shirley and everyone else - hope you are all well.

love to you all

Ashley xx


does anyone know if driving to colorado, from a elevation of missouri will affect my Lab? me and my frinds are going house hunting for a week, and we were going to visit the rockies aswell. any info would be AWESOME!!!!

Hi

I just wanted to reply to Ashley about my work situation. Yes to give some background for you I did give up due to this illness.

I was a Solicitor and worked full time 9 - 5.30pm every day for 5 years until this struck. After a month off, I returned to work doing 4 hours per day from 9 - 1pm each day. I was terrified about returning and was nowhere near ready for it. At that stage I still did not know what was wrong with me and was having serious anxiety and panic attacks and very bad off balance feelings, severe fatigue etc. Because I did not have a diagnosis I felt I had to go back because I was having to go to the doctors every week begging for a sick note and work were nagging me about when I was coming back.

Anyway I just about dragged myself through each day. For the first few months I was crying several times a day because I felt so bad (trying not to let anyone see). I lost 2 stone in weight down to 7 stone and although colleagues were sympathetic it was so hard because I could not even tell them medically what was wrong with me. After about 4 months I increased my hours from 9am - 3pm each day. I could do the work but it was a battle getting through each day and I had no energy at all just had to lie down from when I got home until bedtime. I could not interact with people at work because I just had to focus on keeping balanced and did not want to move my head or eyes from my computer screen.

Donna you are right this is a frightening and isolating condition and none more so that when it is at its worst and you are with people who dont really have a clue what it's like.

After suffering through last winter with endless colds, flus etc and all the symptoms of this thing, I was getting really run down. My neck had started hurting as I was compensating for the dizziness, my lymph nodes were swelling and I felt so run down. On top of that my work load was growing and I was getting more and more cases to handle each week. It would have been hard even if I had not had labs but to deal with the stress and cope with all this work was becoming impossible. I was expected to handle more and more cases depsite working 10 hours a week less (and being paid less) and feeling so bad.

By May I had reached breaking point. Whilst the dizziness was slightly better, the neck pain and fatigue were getting unbearable. I went to the doctor and after 2 weeks off they said I had to return to work part time. I knew I couldn't go on at that point and agreed with my boyfriend that I would leave. Thank god for him, I think he saved my life because I dont know what I would have done if I had to continue as things were.

I spent several weeks in bed totally exausted after leaving in May then slowly built my energy levels up by taking it easy. Now I can cope with my days at home doing bits and pieces and taking regular rest. I try to avoid stress as much as possible as I feel my nervous system has taken such a battering.

Sorry if this is too much detail but I guess what I would say to you Ashley or anyone returning to work from what I have learned is this:

1. Dont return unless you have to and feel ready to. 2. Make sure your employers know what is wrong, the kind of symptoms you have and set boundaries for them on what you can and can't do. 3. Dont even attempt to go back full time straight away! 4. Make sure your employers and colleagues know this is something with no definite end date so you cant say when you will be able to increase your hours or return full time etc. (I always felt guilty leaving early even though I wasnt being paid for it). 5. Be mentally prepared to feel bad especially at first. You will feel a sense of achievement when you get through it BUT be careful not to push yourself too hard as it will make you worse.

In hindsight I am glad I went back to work for a year even though it was the hardest year of my life because otherwise I would have been wondering all this time if I could have done it and how I would cope. Now I know the answer to this and I can say for sure that I gave it my best shot but in the end I had to take time out for my own mental and physical wellbeing.

Hope this helps a bit.

Love Jemma xxx


Jemma you really are a trooper for carrying on working with this honestly! I read oyur posts and sometimes it just makes me wanna cry when I see what people have to give up and go through because of this condition and it isnt fair all you want to do is get on in life! I dont blame you for taking a break What do you have ? and how long has it been for you?

Ashley I have dizzy dreams sometimes and also dream Im drunk I find this particuarly distressing as its my only escape . I hope it doesnt happen again to you.

I have two small children they are aged 2 and 4 I also used to work as a carer and I want back Sept I lasted 2 weeks as i came home every night spinning so badly in my head and was so worrying about work and looking after the kids I just went into meltdown and handed in my notice . I did feel like a failure but being a mum is hard enough without working and having a disorder isnt it.

I was such a full on mom before playing with my kids etc and its hard now Im grateful on the good days when I can play with them . Over Xmas I dont know what happened but symptoms got so bad my hubby had to have the week off as I couldnt care for the kids I felt so guilty. Im glad now my relapse lasted 10-12 days and im back to my 'normal' dizzys at the mo but worry about that happening again hubby cant lose his job too!

sorry Im rambling everyone lol !

Wow Thank you for your replys!! :) I really have had a blip but hopefully will come through it again, no sign of cold or flu as I was expecting but strangely my husband has experienced dizzines & full headed feeling the last couple of days he said when he laid down in bed it felt like he was on a fairground ride, I said welcome to my world for the past year!! I really think its just a wierd virus maybe again & that he is feeling a touch of it too. At least now he may understand why I have been a little 'miserable' for the past year!!!

Gloria, Pilates good idea i used to do it regularly then syarted classes again last Jan just as all this began so had to give up as was too scared of spinning out in the middle of class. It will hopefully help you alot & cant do you any harm. As for the water skiing!! Go you what an aim for you you never know could be the best VRT yet!!

Sue think you are right on the virus thing so back to positive thinking that it WILL get better

Cathy nice to hear from you again, your post sounds very familiar we really must learn to know our limits!

Donna sorry to hear you feel so low its really hard not to, it is isolating but at least we all know exactly what you are going through x

Wendy, Parents evening!! Aaggh I think I have sat through at least 4 of those since this all started & I am the same as you in the evenings shame it couldnt be parents mornings. The hormonal thing has def kicked in although my cycle has finished now so fingers crossed for improvement (well for 3 weeks anyway)

Ashley Your pipe problems sound like a nightmare not good for a dizzy head, try not to worry too much about the tingling/flushing my hot flushes were so bad at the beginning of this I thought I was reaching menopause! I havent though. The tingling drove me mad too it is all part of it there is no real explanation I dont think & the docs are so useless they know absolutely nothing about it. I dont get the tingling anymore that subsided more when my anxiety did but strangely went for a cup of (caffeine free) tea with a friend today & when I got in my car looked in my rearview mirror & my neck & face was completely red & blotchy god knows what my friend must have thought, she didnt say anything :).

Jemma Just read your post I didnt realise you were a solicitor how stressful for you no wonder you couldnt work with this thing sometimes its hard just posting a bit on this website without all that brain work going on in a full days work! Hopefully when you recover you too will have a new zest for life & your career can take off again. Hows your website going?

Anyway that was a long one sorry, hope it hasnt given any of you a swirly head :)

Claire xx


Jemma, thankyou for your latest post. Yes it does help hearing about your return to work. Although I didn't have anywhere near the responsibility or high profile that you had in your job, the guilt and the worry about not being able to do the job to the best of my ability was awful. I definitely understand - I regularly feel really guilty for not working and contributing towards the family household. I also think because this illness has peaks and troughs, you often don't know how you are going to feel from hour to hour, let alone how you feel day to day. I think that it is very difficult to explain to other people how you feel, as you often look perfectly normal. Wendy - I understand about the hissing mine is worse in the evening, but I've lost the fullness - for now! Does anyone else feel worse after car trips? I think I get a form of travel sickness, which then sets off the vertigo. Love to you all Sue xx

Hi Ashley, I had the tingling and hot flushes as well. I also thought I must have MS or something. It was really worrying and none of my doctors took me seriously saying it must just be anxiety but I was never convinced. I did read somewhere at the time that a really bad virus can cause the tingling - I think it's like nerve damage. Anyway, it did eventually go away. Claire I also went and had my hormones tested thinking it could be menopause! I am sure that the dizziness got worse at different times in my cycle as well.

Take care everyone Cathy


Hi All. Seems such a bad time for everyone. Its awful. I really didnt cope well with parents evening. We had been there for about an hour and had seen 5 teachers and the last apt was late, by this time the strip lighting in the school had made me so dizzy had to miss the last apt. I was so frustrated when i got in i must admit had a few secret tears as just felt absolutely useless. Felt even worse as one of the mums had just finished her chemotherapy and she managed to stick it out. The thing with our illness it is invisible to everyone, and on the outside i think i have looked the healthiest i have ever looked due to not working and stress that comes with that. Feeling really frustrated today with it.

Jemma, you were a star coping with your job for that amount of time. Dont know how you done it. Enjoy your rest!

Claire, my husband had flu over the xmas hols. He did not move out of bed for 2 days and was ill for a week and getting frustrated by the end of it. I was mean and said to him i would love to be ill for a week, try being ill for a year. He has been so good about it though, although sometimes when i go on about the different and weird symptoms we all get, he does seem to drift of a bit! Think he is getting bored and just wants me to be better. Hope you get over your bad blip soon.

Donna,you are doing brilliantly having to cope with young children as they are so demanding. Im glad mine are older, although especially now im not working i do run round after them more than i should, think to compensate for me not working it is a guilt thing.

Ashley, hope your pipe thing sorted out, Since having this things like that are even more hassle to sort out. I too get hot flushes, i put it down to this alien illness that has to try and come out of bodies anyway it can. I dont get tingling but lose circulation in my fingers to the point where i have yellow fingers and lose feeling for a while. Great isnt it. Take the advice of Jemma about going back to work. dont over do it.

Sue, i agree wth exactly what you said abount not knowing how you are going to feel from one day to another. I really feel the guilt of not working. I think that is why i compensate by doing everything for everyone at home.

Gloria. have you been practising for your water skiing in this heavy rain we have been having. Hope you are relaxing more after busy time at xmas.

To all the rest, look after yourselves.

Much love,

Wendyxx

Jemma – thank you for your advice on returning to work – I spoke to my employer back in September about having a phased return to work, as requested by my doctor, but he didn’t seem too keen, in fact he said he didn't have enough work to give me even for the 15 hours I requested. I have contacted ACAS for advice and they have said that as I am still employed with him I can return to my old position and he has to accept that. Apparently if he sends me home due to no work then he still has to pay me. The big problem is I know I would not be able to work a 40 hour week. In fact the week after I asked him for part time work I relapsed and have only recovered from that. On a good day I know I can do the work, and if there was a guarantee that I would not go back down that slippery snake I would do it but with this condition there is just no guarantee.

Claire – what on earth is going on, you were doing so well and I had such high hopes that this was it for you. You know this is just a blip and it will pass just as they always do. Those flipping hormones, it's just the same for me, but as I am 50 this year (eek hate saying that) I am wondering if I might be going through the change as I am now starting the hot flushing malarkey. The joys of being a woman – HA. Glad that in your last post you sounded more positive. We will beat this thing Claire – we just have to keep going and believe it !!

Gloria – I love reading your posts, I don't know if anyone has ever said this to you but you have such a good energy, I can feel it coming from your posts and it gives me such a boost. Thank you so much for that x You go for it with the water skiing – we all need a goal and what a fantastic goal to aim for.

Ashley – you said something in your last post that really surprised me – you said that you got this after you had a water infection. Well so did I but I never put them both together. All the symptoms you have described I have had. I also used to get a lot of facial tingling as well as numbing in my nose and lips. As time goes on it does seem to disappear but every now and again my bottom lip does still go numb but I'm passed the point of worrying about it now.

Well a quick update on me. On the whole I am still going up that ladder although I have still not reached the top. I now have a lovely PT who says she is positive that she will get me to 100 per cent. She thinks the reason I have not compensated fully is because of my neck and also that I might have some remaining crystals as when the ENT doc did the eply he did not put me into the last position when sitting and she thinks some remaining crystals may have gone over into another part of the ear canal. So the plan now is to keep up with the neck massage, do VRT for a couple of months and if I still experience the dizziness on my left side then perform the eply again. Now doesn't that sound so simple – LOL.

Also does anyone else have trouble with driving ? Weirdly I am ok as a passenger but not as the driver. I find the movement of oncoming traffic and roundabouts difficult and also when I stop I get the wooooooer feeling- you know the getting off a fairground ride feeling. I really want to conker this so any ideas would be greatly appreciated.

Donna, Sue, Wendy and anyone else on this site, hope your all ok. Love and hugs Shirley x


so people GREAT NEWS today is the best day i have had since this lab started!!!!

I FEEL SO AWESOME!!!!

it might not be gone, BUT LORD OL MIGHTY DO I FEEL LIKE A MILLION BUCKS!!!!

its been 4 months, and i started out with a bad week THEN BAM i have no symptoms beside the blurred vision!! :D

even if i have another bad day this day has totally gave me new hope!!!!

FYI i have not taken any meds at all besides when i took xanax, and mezicline for about a month then when that didnt work i fegurd i would let my body heal on its owen even through the worst.

yesterday i woke up at 4 in the afternoon and i havent slept since i think its because i feel so good, and all the energy i have gaind that was stored away from so much sleep has hit me IN THE FACE!!!

i will deff update on how i am, if it comes back or not!

Hi all,

Great to hear from so many of you. Cathy - I didn't expect to read posts from you again. So sorry to hear of your relapse. The nature of this beast as I think most of us on here now realise - until it really decides to go for good. Wishful thinking?!!

Claire - your poor husband. Although a bit of you must think now you know what I'm going through!! Is it a bit like 'manflu' - maybe there's 'manlabs'!! If this wasn't such an awful condition that could be quite funny, but nothing about this thing is funny. Hope he is OK and you are up that ladder again. Have you resorted to taking any meds. I have taken some Stugeron. Helps a bit but doesn't get rid of the fuzzy head and headaches though. Have also gone back to ding my VRT 2 a day. Maybe the answer is to do them ALL the time?!!!

Me - well am having a really horrible 'blip'. Been like this since after Christmas now. As you say Claire, the headaches/heavy head dizzy spells. Nightmare. Really thought I might have seen the back of those. Have had blips, but not like this - back to how I was some months ago. Only hope I'm going to come out quicker this time.

That said, I'm determined to not to let this rule my life. That in itself could be the wrong attitude. I wish I could not be like a whirling dervish and have to do everything at a fast pace. I feel like I'm wasting time to sit and rest. Not good, must try harder as my VRT physio would no doubt say!!

Shirley - thank you for your lovely comments. I have always been an upbeat person, but this has tried me to the very end - like us all. I'm sorry you are having problems with your employer. People are so uncaring sometimes. You are right about the uncertainty of this condition. When I have felt OK, I've thought about getting a few hours work of some sort, but this last couple of weeks or so have proved to me that I cannot commit to it yet. I, like you Wendy and Sue, do feel uncomfortable about not contributing to the finances. My hubby does contract work and lost one of his contracts just before Christmas which means belt- tightening and more guilt on my part. Thankfully, he is very understanding and doesn't expect it of me to go to work, although he wishes I could find something else to do rather than notice all the odd jobs around the house (as I'm at home so much) and nag him about doing them!!!

Jemma/Donna/Ash/Wendy/Sue - thinking of you.

I'm hoping that when brighter better weather comes along will help us all feel much much improved. Going for a rest now to try and calm my head down.

Love and hugs Gloria xx

Hello fellow sufferers!! Whats going on why are we all relapsing is there a Labs epidemic?? My husband is really suffering with dizziness/nausea he drove home at lunchtime & said he felt like he had travel sickness (which he does suffer from).

Gloria I am afraid I did say to him "welcome to my world" poor chap dont think he'll get a lot of sympathy from me :(

Wendy, listening to your post is like listening to myself, quite comforting in a way. My husband & girls have also been very supportive & hubby has listened to my woes & symptoms & I too think he must be getting bored with it now in fact I think everyone must be getting bored with thats why I dont say too much these days (except on here). I also look 'well' these days so people think you are better & when you say you still aren't right they all seem surprised I often wonder if people think I am putting it on.

Shirley, I feel the pressure in my head when driving but the concentration seems to take my mind off it however I'm not brilliant as a passenger, dont like night driving too much either too many lights that distract the vision.

Anyway getting swirley now better go & rest

Claire x

Hi all,

Sean - BRILLIANT! That is fab news - really hope for you that this is your turning point. You are young and, for most at your age get over this monster very quickly. Get out there and start living as you should! You said you were going to Colorado - house hunting? What a place to go house hunting in - sounds great. Go and enjoy yourself. Take it easy though and chill out at times so as not to overstress your body into a relapse. Keep us posted with how you're doing. Good luck.

Claire - know what you mean about not really mentioning this to anyone anymore. As you say, too, we do look well. It is so difficult to convince people that you feel so rubbish and look fine. This morning I feel like I have had a night out on the tiles and drank for England. Are you coping with it all or are you taking anything to help? I'm trying not to take anything, and, don't know if anything really helps anyway to be honest.

Swirly head or not, the supermarket beckons as the cupboards are bare!

Take care all, Speak soon, Love Gloria xx

Gloria,

I havent taken anything 'yet', was considering taking a travel sick tablet before tonight as its my husbands 'xmas' works do- bowling!! I missed it last year as that was when this all started so determined to go this year, who'd have thought back then that I would be feeling exactly the same a year later :( . I hate that hungover feeling every morning when the dizziness is bad also getting all the wierd vibration/shaky feeling in my left leg. Not looking forward to tonight for one the menu is everything & chips!! (january diet) & secondly the noise, the bright lights, trying to focus on the scores on the tv screens AAArrggghhh!! I'm sure it will be fine. been to the gym for second time this week also had a power walk yesterday & started a Pilates DVD I used to always use, was okay with it didnt feel too spinny on the lying down ones!! I know i prob shouldnt be doing all of that but I think it's kill or cure the exercise helped me so much last year. Will rest up as much as poss this weekend after tonight there are no pressing engagements so will keep it that way!!

Hello to everyone else xx

Hey everyone

I can't believe how many of us are suffering at the moment! What have we all done to ourselves?! I think mine is the result of a very stressful week; but then sometimes I think maybe I try and find an explanation for these relapses when really there isn't always one.

Jemma - thankyou so much for telling me about your job. I really don't want to give up my career but I'm not sure how I am going to cope. Like yourself, my job is extremely demanding. Starting at 6am and finishing at 8ish can be quite the norm. I have a meeting on Monday with my employers to discuss a phased program back to work. The trouble is I also want to complete the last stage of my ACA qualification. I should have finished it last year but this illness totally ruined that. The exams are so demanding even for someone who is 100%, but I can't give up hope yet. It is so important to me to achieve this; I have worked so hard for it. Do you hope to return to the Law profession one day?

Claire - your poor husband! I would not wish these symptoms on anyone. My boyfriend went dizy briefly the other day ans I couldn't help saying "welcome to my world" LOL! I hope you enjoy your evening bowling. I don't do anything like that anymore. I wish i had the confidence to. When you say you are not good as a passenger do you feel more dizzy and sick? Have you always suffered from travel sickness or is this purely the result of this illness. My specialist said that when I am over this I should no longer feel dizzy as a passenger; I hope he is right!

Shirley - Yep a water infection was the cause of this beast! I had an infection and then it went after taking some antibiotics. A few days later it came back and then I was hit by a sudden attack of vertigo and the rest is history as they say! The docs said it must have been viral all along and because I was run down my body could not fight it and it spread to my ear. In relation to driving, I have had major problems in the past. I totally know what you mean about the coming off a ride feeling. I also felt like my eyes could not keep up with everything that was happening. Back in July I had a bad dizzy spell on the motorway and my brother had to come and get me from the service station. It frightened the life out of me and I just stopped driving. Nothing moved visually to me but my head felt so woozy inside and when I stopped the car I felt like I had just finished on the big dipper! Anyway recently I decided to start to try and overcome it as the docs said I should start getting my confidence back with it and the more I did it the easier it would become. I started driving with someone accompanying me on short journeys and now I can do short journeys on my own and I have now done the motorway with my boyfriend with me. I still feel more woozy when i stop but try and sit for 5 mins when you stop and it should pass. The jelly legs when getting out of the vehicle does star to become less frequent; and if it does happen then try and stay calm and your balance should return within a few mins of walking around.

Wendy, Gloria, Donna, Cathy and everyone else - thinking of you all.

Ashley xx


SO its still been good since i last post, things do seem to be getting WAYYY better now i can listen to loud music without going CRaZy!! xD

i can shake my head un, down, left, and right without getting the dizzy effects from lab. it also seems like i felt fluid drained out of my ear. hopefully its the infection leaving my body.

i still have blurred vision which idk about since its not my head all out of WaCk!

hope everyone is doing good, and taking it easy :] i'll keep up on the updates to show if i still get better, or worse.

THANKS FOR ALL THE SUPPORT!!!!


Sean(Comment Jan 7th)

Darling you have just made my night, I'm sitting at my computer and it's nearly midnight I have to work tomorrow and I have 5 teenagers laughing and playing their oh so enjoyable(not)music and my head is bouncing around 24/7. And most of the east coast of Australia is under water. And you my sweet one has made me laugh for the first time in days. Sweetie, Sweetie please promise me you will not touch the Marijuana all it will do is play with you head. I promise you. You think you can't think straight now , wait until your stoned on that rubbbish. Believe me I know what I'm talking about I'm an old hippy from years ago. I'm sure everybody on this site who has had a puff in the past will agree with me. Just remember the secret to this Labs is try and stay as H A P P Y you don't need drugs. Go and do something stupid with you friends, play a prank on someone anything that makes you laugh. Keep lots of yellow(for happyness) and purple(for knowledge) colours around you.

Love Aussie Donna


Good day to all!

I'm feeling tremendously better since I first wrote in December. I was still despairing at that point how this crazy dizzy thing could reappear after months of really nothing at all.....and then just stick around the way it did. I was getting really worried, especially when sometimes when I stopped driving, that I got dizzy (once with vertigo at a red light OMG! Freaked me out.). I was fine moving in a car, but the stopping was unpleasant. I had to be careful to never look to the side until I got moving again, even just inching forward helped a lot.

But things have cleared up considerably since I flew out to my parents' place before Christmas. I was worried about my ears since I'd been having them "full" so much and having difficulties popping them, but just as a major weather/pressure event caused all this to come back, I swear the big ear pops on the plane helped to even me out again! I had no issues whatsoever on the flight home! The vrt nodding exercises might have helped too :)

I'm back to having sluggish-popping ears again, and the tinnitus is 24/7 permanent I lament, but most nights I barely have any dizziness at all now and can fully sleep on my right side again (that side I called my vertigo side!). How my left shoulder feels relief now! I only feel a bit woozy now during major weather changes (like upcoming snowstorms and chinooks) and if I'm tired or too hungry or concentrating too hard. I even started reading a novel, something I had to avoid for a few months. I'm not ready to paint the walls yet as I had planned for a project this winter, but maybe I'll put that off until summer. I'm not so secure that I can do that much up & down for a while yet. I've picked out a fab smokey-grey-purple for my bedroom that I just have to see on my walls!

So I am optimistic and hope that I am leaving the worst behind me now. I live alone and felt a tad isolated by the experience. Only the constant buzzing in my ears now to drive me batty (although i am surprised at how I've adapted to ignore the noise). Anyone ever get over tinnitus induced by labyrinthitis?

Take care everyone! E.


Hi Guys I am over the worst relapse Ive had in a long time but symptoms do not seem as settled as they were. Has anyone had any success with MAV preventatives? Its quite annoying having this everyday although I can function through symptoms again its very hard on the soul feeling like your on a boat 24/7 . Does anybody know of ANYONE who gets better its been 16 months and does VRT really work Ive heard mixed reviews as Im told I have MAV and maybe an upset right ear which I have T in constantly and sometimes it pops etc . Today it feels like Im being pulled to one side a lot . Ive heard the two year mark is a turning point for most sometimes three but my life is on hold waiting for symptoms to die down or maybe one day go :( Hope everyone is doing ok xxx

Hi all,

E - so pleased to hear your good news. The fact, also, that your flight didn't affect you has given me hope about flying off to somewhere nice! Warm, sunny climes would be fab right now - the UK at the moment is SO depressing with horrible weather. It really is a good feeling to do things that you haven't been able to do for a while - try the painting - it could be good VRT LOL!! The tinnitus, I find, does fade, although returns if I'm having a bit of a blip (like now). Keep us updated with your great progress and good luck E.

Aussie Donna - good to hear from you again. Just reading your post made me laugh out loud too! You sound like you have had this for a while? How have you coped - especially with 5 (noisy?!!) teenagers AND working? I admire you already!

Well, I'm back down that slippery old snake big time. My head, neck and shoulders feel like they are in a vice at the moment. Strange thing is that I don't have too much swirlyness, just feel unbalanced and all the muscle probs. Thought I was doing quite well too - HA HA HA!!!

Ash - how are you now? No more leaks I hope?!! This is a monster thing to have - just when you think you have got over a symptom for a while - back it comes again. AAARRRGH!! The sweating thing is weird too. I get this. It was a nightmare earlier on, then went away and now comes back when I'm not too good. Whilst not pleasant, I was glad to hear you experience that too - I thought for me it was an age related thing!! Any progress on your work situation? A guy called Gary who posted on this site earlier, had this for a good 18months-2 years, but at about 2 years of having labs he was feeling well enough to go back to uni and study. So, take your work situation slowly, but you will get there Ash

Claire/Wendy/Jemma/Sue/Shirley/Donna and all - hope thing are on the up and up.

S and Ish - if you are looking in - how are things? S - any progress with Stugeron? And Ish - did you get the results of your lyme test?

Love and hugs, Gloria xx


New to the site, Have read all the comments. It is truly re-assuring to know that you are not on your own. I am 7 weeks down the labs road and have all the typical symptoms (the lot). Doc has just refered me to ENT (at my request) as I am sick of being messed about and fobbed off. Doc says he is pretty sure it's labs though - as it has been accompanied by some sweating etc (unless that's linked to the anxiety element - which it may be).

I will come back to this page again - and give you the story of my journey thus far. It will shock and ammuse in equal measure.

My tips so far - they may not suit everyone - we are all different and respond differently. Take em or leave em - it's upto you. They helped me.

1. Get on the vitamins etc straight away - C, B12 - Ginko. Give the old immune system a kick and a fighting chance. 2. Take some of the meds on offer to make life easier and get you through the worst days with some level of normality. A low dose valium (diazapan) when needed and some of the balance meds can work wonders. You can slowly decrease the balance meds over time to allow for any compensation. 3 Get out and walk when you can - if possible take someone with you. Do not talk about labs. Talk about anything else that takes your mind off it - most of all laugh if you can. For some people the walking is easier in the day - for others its at night as it's quieter on the eye and ears. 4. Push the docs when you think it's necessary. Don't be affraid to make a nuisence of yourself. Take your partner of friend / relative with you. Let them provide support and let the doc know what you are going through. They are useful in letting the doc know what you were like before the illness - which was important for me. My wife was a godsend in this respect. 5. If you want to watch TV to help with some of the boredom - i found that a small screen (portable) TV at about 12 feet away in the bedroom was OK. Seemed to cause less of a prob with the eyes and hence the dizzies etc. In the begining I started watching lying on my side with one eye covered - then as things got easier was able to use both eyes (still lying on my side). Now can confortably sit up and watch a full length film no prob. I also have a small light on elsewhere within the room - do not watch the TV in a darkened bedroom. 6. Be wary of the panic / anxiety aftershock. Know it's coming and get support with it. Try to avoid the meds if you can. For some this may be worse than the labs - don't let it beat you. After a few weeks I could feel it taking me down and I am still fighting it. 7. Try to eat well.

That's it for now - I will report back any stuff I found useful and further info at a later date.

Had a little drive in the car today - couldn't have done it 2 days ago. Brought a tear to my eye !! First time behind the wheel in 7 weeks.

Keep fighting - you will win in time.

Best Wishes to you all.

Binx 1965

Hi all

I had a couple of reasonable weeks but seem to have slipped a bit, as last few days been more swirly headed and ear has been clicky. Ugh!

Donna glad you are over the worst of your relapse. I do think relapses are part of this and not necessarily a sign things are going worse overall. Virtually everyone on here has setbacks every few weeks and as long as your condition is a stable one, ie not bppv or meunieres then you should improve. I am not sure about MAV, are you taking anything for that?

I have read that the experts consider a recovery in 2 to 5 years as quite normal for vestibular damage. Some people may go on getting symptoms for the rest of their lives but things should improve even in the worst cases.

E and Sean so glad you are improving. Welcome to Binx, you seem to very positive and at least you are seeing improvements which is reassuring at 7 weeks!

aussie Donna have you recovered from labs? You sound very accepting of it and positive about life.

Ashley did you have that meeting with your employers about returning to work? Hope it went well.

Gloria I can empathise about the slippery snake. I did some improvement in my balance in December but had that chest pain. I stopped exercising the chest pain has pretty much gone but my balance has worsened again! Its hard to know what to do for the best isnt it.

Everyone else hope you're all ok.

Jemma xx


Hello all,

Think I pushed the boat out too much yesterday. Felt particularly well - eyes good / tinnitus abaiting / balance good / no neck pain / little or no ear pressure or desire to keep poking at them to clear them etc.

Had a little drive in the car - with no problem. Had people from work come visit. Went in (and out) a few small shops for confidence. Lighting in the big places still gives me the swirl and shakes instantly - feel I am going to collapse and have to hang onto stuff. Also went for a 20 min walk in the evening.

I did more yesterday than in the previous 7 weeks put together.

Guess what !! Currently lying in bed completely drained and wiped out. Although luckily no worsening of the major labs / head symptoms. Although I did have a bad tension headache last night - it was gone this morning - thank god.

As far as the meds go - I am currently on a reducing dose of Prochlorperazine Malate. I seem to have benefited from this and will now stick it out. Think it also helps with some (just some) of the obsesive thinking / anxiety as a side product.

Even if i continue to make steady improvement - i will be keeping the ENT appointment. Got to see this through.

I predict my worst issue moving forward will be the panic / anxiety side of things. I tried to carry on as normal when this first started - not knowing what it was. Tried to drive and do everything (i mean everything) else - big mistake !! Think I have subsequently generated a few phobias / anxiety / panic triggers. I should have taken it easy and visited my doc when i first had the problem / symptoms. Not waited a week till I thought i was collapsing / having a stroke / heart attack etc. BANG - too late - panic attack !!! Thankyou very much !!!!

The biggest battle (i fear) will now take place in my head as I try to subdue the post viral anxiety demons.

I do seem to believe that your body will overcome the initial inner ear virus in 3 - 4 weeks - and what some of us are battling with is the post viral fall out of this horrible (and i do mean horrible) illness. This could go on for months or even years.

I have asked my doc to run another general panel of bloods next week - to look for indicators of any viral loading etc. I might ask him to throw in Lyme (if possible) for good measure.

Take care of yourselves - and each other !!

Keep fighting every day !!!

In the next few days I will post my story.

Regards,

Binx 1965

Hi all,

Jemma - lovely to hear from you. So sorry you have joined me on that snake again!!! Should have shut up about not being so swirly headed. Today has been like 10 months ago!! What the heck is this thing doing to us?!!!! Feel really groggy even though had to cope with an aged auntie of mine coming over for lunch. Didn't say too much - thankfully she can talk for England - so just had to nod in the right places (bit of extra VRT LOL!!!). Joking aside though, have felt a bit rotten again. Oh normality where are you?! We're hopefully going off to Devon for a long week-end. Just hope the weather stays dry. Don't mind the cold as long as it is bright and dry. Some long coastal walks to clear these labs cobwebs from my head. Today made me realise that any thoughts of returning to some sort of work are out of the question. Even though feeling bad, but at least am at home and can deal with myself.

Any plans this year Jemma or, sensibly, taking things slowly?

Binx - hi and welcome. Sorry you have had to join our band! This is such a scary thing when you first develop all these symptoms. Even worse is not knowing how long it will be with you. You give good advice, although I do try and keep off of meds as much as poss, but do take them when I have to. Certainly take all the vits though. I have resorted to taking valerian tablets to help with anxiety which are good too. I think everyone has to find out what suits them. Great to hear you also managed to drive your car - way to go!! You keep strong too and keep in touch.

Donna - keep on in there. Relapses are a nightmare. You have a little false hope and feel better, then back down again! I'm there at the moment! Hugs to you - ooo.

Well, I think it is early bed for me tonight and I'm afraid a Stemetil! Not had one of those for ages!

My positiveness is a bit wobbly, but hanging on in there!

Love and hugs, Gloria xx


Hello everyone, Well I have been feeling a bit better these last few days, but don't know why or what I've done to make me feel better. If I did I'd be posting it on here. I'm taking 400mg of magnesium a day as well as my prescribed Verapamil and 10mg Amitriptaline at night. Ash and Gloria: I too get very hot at night and am undecided whether it's age related or dizzy head related! Have had blood test done, so all will be revealed! Hello to Binx, it's such a horrible invisible illness and unfortunately there is no normal track for this, sometimes it goes quite quickly and then it can just run and run - unfortunately I'm the latter type! Back to my positive New Year Resolution, I went back to Pilates and apart from being careful getting up and down and tilting to my bad ear side, I felt very good. Has anyone had any success with the WII FIT? Jemma - I really hope the 2-5 yr recovery is right as I unfortunately hit 5yrs in April. I do think that stress has a lot to do with this illness, I had a particularly stressful year last year, and although it's not the cause of it, stress certainly doesn't help the recovery time, it gets to be a real vicious circle. Heres hoping we all get a reprieve from this dreadfull illness. Love to you all Sue xx

Hi Sue,

I'm thrilled that you, at last, are feeling better and hopefully will carry on doing well. I took 400g magnesium for my heads last year, but it had an awful effect on my stomach - made me dash too much to the loo!!! I have got this Sibelium from my doctor that Ish on here talked of. It is another calcium channel blocker but linked to the Stugeron family and is known for it's properties in helping vertigo related issues as well as migraine. I want to wait and talk to my neurologist though before I start to take it, because it isn't licensed over here although specialists do prescribe it - so I just want to make sure. That appointment won't be until goodness knows when though - NHS and all that!

Also, last year my hubby bought me a Wii Fit. It is a lot of fun and I think the balance exercises helped. I stopped doing it for a few weeks before Christmas and I think that, plus I wasn't as conscientious about doing VRT (too much else to organise) is an added part of why I am having this relapse. Don't know for sure. If you can get one, there is loads of things you can do and other cd's to buy to go with it. I recommend it. Anyway, Sue, keep on doing whatever it is you don't know you're doing - LOL!! You deserve to be rid of this after your lengthy penance with labs.

Lots of love, Gloria xx


Hi everyone,

havent posted for a few days, dont know where this week has gone. Had lots to sort out early on in the week, normal sort of stuff, but feeling the effects today. Heavy head, realy stiff neck. My bad ear still playing up, and just feel so tired.

Gloria, made me laugh about lunch with your aunt, i have a friend the same, just have to nod in right places as these days am happy for her to do all the talking. Hope you feeling bit better soon. It really is draining, as it just keeps going on and on and on. I am thinking of getting the WII fit, as the girls already have the WII, may start with yoga etc, have got so unfit. Been for long walk this morning, with woolly hat to cover ear! Honestly feel like an old woman. Enjoy your weekend in Devon, will clear the head.

Sue. glad to hear your doing better, let us know what you have done to get that! I too sleep hot now with this, not sure if age, but im sure it is to do with labs. 5 years is a long time for you to have been suffering, hope you get lots of support.

Binx, hope you make good progress, really have to be patient with this. The anxiety was really bad for me around the 3 month mark. Somebody taught me to breath in for 4 seconds and then out for 3 seconds, when i felt an attack coming on. Did and still does seem to help as you focus on your breathing and not the anxiety. i really think we would all try anything that would help or cure us.

Jemma, sorry to hear you slipped back down again. I am really going to aim for the two year mark to be rid of this, thought maybe the one year mark it would go, (we hope), cant imagine years of this.

To everyone else, lots of love

Wendy x


Donna lol i was just wondering if it could help but i will take your word for it :)

So today is a bit of a downer i woke up with my body feeling wierd, and feeling like there is a earthquake inside of me. but the dizziness has seemed to go but still my body feel CRazY. plus like all of you i feel a bit insaine but that is nothing unusual with this stuff HA lol

So i think i fegurd out why we have some good and bad days. i was feeling really good all week untill i woke up and there was snow EVERYWHERE :O not only snow but there was a high pressure system moving in. this has happend to me a couple of times when i feel really wierd due to the extream weather with high pressure systems.

so everyone that is interested in this theory should watch the weather wait for a high pressure system and see what happens, and write back!!

there is a tylenol pressure relife pill that i have been taking when this happens it seems to help ALOT!!!!

THANKS FOR ALL THE SUPPORT!!!! :D


i posted the anonymous above

Alright so i am going to list all my current symptoms

stiff upper neck, always tired, head not so dizzy anymore but it feels spacy, sometimes i get a upset stomach, blurred vision, hot flashes every now and then, ringing in ears,ear pain, fluttering ear drum, earthquake feelings, vivid dreams, and its sometime hard to read out of a book :/ but all this stuff comes and goes in differnt waves.

i'm going to go get lyme teasted really soon.... but i do have periods where i feel really good but today was just.

Hi all,

Well off to Devon for a few days. Weather brighter - cold and crisp but dry and bright - so good for walking. Like you Wendy - will have to have the old woolly hat to cover up my ear!

Great to hear from you Wendy. We do just have to plod on with this thing don't we. I suppose, even though I don't feel good, I am getting around and doing stuff which I didn't the first few months of this. Progress???!!!!!! I do love the Wii - thing is I get carried away and end up the next day with more aches and pains than before because I've overdone it!! On the news the other night was a piece about how doctors and physios have been really busy through people getting a Wii for Christmas and putting their backs out etc! Wii Fit is brill! I was out doing my daily walk and just sighing with how I so want to be normal and not feel odd or have stiff muscles etc. etc. With you on settling for the 2 year mark (I'm this June) - so it had better get moving LOL!

Hi Sean (I think it is you that signed in Anon?) Yep - change of weather does effect nearly everyone on here - the feeling insane maybe a full moon??!!!! I've also wondered about all the other stuff that I experience - odd twitches, pains in muscles I never knew I had, jittery feelings etc. How or why, I have no clue, but never had anything like this pre-labs. We don't have Tylenol over here - sounds good - what else is in it? Anyway, am sure you'll be back up there again soon. Take care.

Love and hugs to everyone,

Will report back in a few days.

Gloria xx


HI folks...just giving an update.

Month 9 of lyme treatment. Overall, still progressing well..in the 90%'s.

Binx and newcomers..I suggest you read my posts above and on previous page regaridng getting an IGENEX test for lyme disease. It is all over the USA and EU.

I was originally diagnosed with Labs back in April by my ENT after testing negative on a "standard" lyme test. But, I wasn't making progress with my labs healing, so I kept looking for answers. I found my lyme literate MD (LLMD) who gave me the IGENEX (www.igenex.com) and I came back CDC positive for lyme.

once I started treatment, I made rapid recovery. I know a few others on here also have since found out lyme was at the root of their labs.

So..if you are new..check it out. Tests are terrible. If you test negative, this doens't mean anything. you can still have it.

If you have labs symptoms with sweating, neck pain, eye floaters, ear fullness, muscle aches/twitching, think lyme.

check out clips of the 2009 documentary "Under our Skin" on youtube and join the discussions at flash.lymenet.org

Cheers,

Brad


Hi everyone I will need to learn everyones names Wendy , Gloria , Jemma , Binx , sue I know theres more will try and keep up x

Great for the person who has gotten better after 4months really happy for you :D

Sue great your feeling better Im back on amitriptyline it was helping me more than I thought it was as I wasnt get too many relapses whilst on it so here goes nothing ! And its fab for sleep isnt it? Ive had a good two days and whe you felt rock bottom with this thing its such a relief to feel more human again isnt it not normal but minimal symptoms again which I can cope with its four weeks tommorrow since that terrible 10 days so Im really hoping it isnt hormonal or it may happen again !

Gloria Sorry your still suffering its a horrid illness with many ups and downs the downs are hard though but your doing the right thing I hope you wake up one day in June and its gone! :D

Jemma sorry your feeling bad again I honestly felt like death the other week and feeling better again now try to remember a better day when you feel rubbish it helps but I find it hard to think it will get better again although I know it will! and yours will too!

Sorry if I miss people out hard to keep up but will try my best :) x


Hello all, Think I was speaking too soon, the wonky head headache and extreme tiredness is back. I'm just going to take it easy over the weekend, thanks for the encouraging posts. Hope Devon is relaxing for you Gloria. Wendy I hope you get rid of all the very familiar symptoms. I just wish my ENT specialist would read the comments on this site, It might help him to understand that this is a very real complaint. Love to you all have a good weekend everyone. Love Sue xxx

Hi everyone, Havent posted for over a week & it seems there are still alot of new & old sufferers out there :( . Hope you all see some improvements very soon (seem to have been saying that for sometime now)

My own relapse is subsiding getting some better days again, thank goodness. How will we know when this finally goes will we need at least a couple of months of no symptoms whatsoever?? I thought the other day if I only feel 25% better than this time last year then will it take 4 x the amount of time to be 100% better (4 years from start??) Hope not! That was on a very negative day. Now I am feeling about 75% better than at the beginning, but goodness knows if that will change next week. Hey Ho onwards & upwards. To all the regulars & newbies Have a good weekend :)

Claire xx


Hello eveyone,

As i'm new its always good to read your comments.

Went to the docs yesterday and asked for more bloods to be drawn to check for everything and anything - including lyme. I think i am still clutching at straws not fully believing its labs - possibly because of the wide ranging and sometimes mad symptoms.

Doc says waste of time pulling more bloods - is convinced 1000% it's labs - and to go home and continue riding it out ! I will now be starting my 8th week of this next week.

I had been making good progress, with even a little driving towards the end of the week - some improvement most days. I then went to the chiropractor last night for some neck work following the pain caused by trying to keep my bowling ball (head) in line. Chiro did some great stuff - and neck feels fine - but my balance has been scuttled again. My head is straight and everything else is now out of sync. Damn. Also woke up feeling reallllllly rough.

Wife drove me to watch kids play footy this morning. Watching the 22 players run around didn't do much for me either - neither did the flickering flourecent light in the toilets. Felt fried afterwards - needed to get home asap and lie down for a while, gather myself and dry off my very very sweaty anxious hands. Panic attack avoided - just.

I am hoping that this is just a little slip and i can start to push forward again. I had been going so well. From reading all the posts on here i ought to have been aware of the slippery snake waiting to pull me back down. Wonder if my chiro was the snake on this occassion - by levelling me up the rest has gone askew.

Anyway - ENT appointment next Friday - lets see what they have to say. Feeling this bad is no good - my sweaty hands and feet tell me so.

Take care everyone - will check in again soon !!

Binx 1965


Gloria - it one that you have to sign for over the pharmacy pseudophedrine is its active ingredient... its actully called advil sinus not tylenol MY BAD... but it works wonders when pressure systems come in :) you must live in England, right?


hey i was also wondering how am i supposed to get a job with this stuff.... i hate having to depend on my parents but yet i cant get a job, because i know i will get fired sooner or later from having to miss work due to day when i feel really bad.

should i start out with a part time job?


Hi all,

Jemma - you asked am I over my Labs, no just quiet and tired. Doctors have taken me off all medication. All seems 20 times worse. But the sun still comes up and the sky is blue and I live were you don't need a row boat at the moment. Somebody mentioned air pressure and the effect it has on us. Believe me it is true! In Victoria at the moment it is very humid and Labs is terrible. Some of you say you can't work with this. Maybe I'm pushing myself to much, I am still working a 38hr week. That's what the doctors here say "Keep working and do as much as you possible can". I'm still a little worried about flying to Vanuatu next week, hope the plane doesn't make things any worse. Does anybody else out there have a house full of 18-22 year old. Their music just kills my head.

Enough for today I have happy (NOT) caravan customers to go and try and sell to.

Love to all Aussie Donna


http://www.youtube.com/watch?v=V6cMkhhqn6k This reggae song helps me relax when i'm having a bad day :)


Does anybody get called lazy with this? people tell me I should be working( I have two young children aswell) and I would love to work again but its to to much! Im tired of people saying I should be doing this or that wish they could have this just for one day !


Hello all,

Been going in reverse for the last couple of days. Will wait and see what the ENT has to say on Friday. Thought i was on my way out of it - but have been pulled back in. Someone on these pages said 'don't push labs - it bites back'. I consider myself to have been well and truly mauled. From 95% back to 40% and feeling drained of all energy and wobbly. Thanks labs - i owe you one !!

Anybody looking for some extra reading - have a look at this forum;

http://ehealthforum.com/health/topic36950.html

My guess is that most of the 'long timers' will have been there already. But for any newbies (like myself) it made further interesting reading.

Week 8 and i am ready for this to go away - soon !!!

Take care of yourselves - one and all.

Regards,

Binx1965 (Nottingham - UK)

hi all

Donna who says you're lazy! Is it people close to you or people who don't know what this condition is? The only people who have made me feel like I should be working through this are the doctors, everyone else has been pretty understanding and sympathetic. I am lucky that the two closest people to me, my boyfriend and my mum are spportive and would not say something like that to me. I dont really know what other people think privately but I would be very upset and angry if anyone called me lazy! As for you, it is hard enough with two young children let alone having this. Loads of women with children stop working anyway let alone being ill as well. I dont have any children and I stopped working. It is not for anyone else to judge you. Unless it's someone really close to you who says these things I would just totally ignore them.

How is everyone else? Gloria, how was your trip?

For me it is same old same old but overall I cant complain as this week hasnt been too bad.

Love Jemma xxx


Hi everyone,

Donna 24, anyone who calls you lazy, tell them to spin round in an office chair 20 times, drink couple of bottles of vodka, put a whistling kettle on (noise effect of tinitus) and see if they can function after that, because that is what us labbies have to cope with majority of time. I said this to a so called friend who found it difficult to believe what i was and am going through. This illness really shows who are true friends and who perhaps are not, thank goodness two have stuck by me 100% the others can honestly say have not been there for me only at the beginning but then drifted of. With two small children you are coping really well, its tough so dont you worry you are doing fine.

Jemma glad your week hasnt been too bad, just have to keep plodding on.

Gloria, hope trip to Devon was nice, probably shattered when you got back with all that lovely fresh air.

Binx, sorry to hear you have gone backwards, really tests your patience. Somedays i feel abount 80% better others it goes back to about 60% after a year so it can be slow progress. Good luck with ENT on Friday.

Claire, Ashley, Sue, hope things well with you all.

Love

Wendy x


Hello all,

Went out for a 5 min walk tonight just to keep the legs working. Strangest feeling - its a very cold night (must be close to 0 degs c) and i could feel the chill directly on both ear drums - like they were hyper sensitive to the chilly temp. Must remember to put my floppy hat (with the ear flaps) on next time.

Don't know if this is linked to the condition - or i have now become mega concious where my ears are concerned.

2 steps forward - 1 step backwards, 2 steps forward - 2 steps backwards, 3 steps forward - 1 step backwards, 3 steps forward ..............

Everybody crosses the finish line in the end.

Take care,

Binx 1965


Hello Donna, the 'lazy' comment really got to me.

Anybody who thinks that this is easy or just some psychosomatic illness - needs to think again.

Aa an example - I have taken no time off work in many years - in fact the only time i had off was for a gall stone problem 7 years back. Other than that i am virtually totally unblemished in nearly 30 years of working service.

Some people would consider me to be a big hard bear of a man - confident - high level manager - 6ft 3in tall - 16st 7lb in weight - very physically fit and a part time football coach outside of my normal day job.

When labs struck - it turned me into a piece of paper blowing in the wind. constant balance problems - could hardly walk - couldn't drive - couldn't work - chronic neck pain - constant fatigue - no appetite / lost weight / constant head pressure / headaches - absolutely riddled with anxiety / panic attacks / phobias. Depression - plus a host of other mentally crushing symptoms - made worse with perscriptiom meds - i could go on and on. I have even shed a night-time tear or 2 along the way - no that's not true - ive wept. Some of this is still ONGOING.

ABSOLUTE QUIVERING MESS OF A MAN !! IN JUST A FEW SHORT WEEKS. ALMOST UN-RECOGNISEABLE (physically or mentally) TO MY OWN WIFE.

But slowwwwwwwwwwwly it is getting better ! It couldn't get any worse. For some this improvement will take a while - little steps - that is clear from nearly every post on these pages.

Anyone thinking someone with labs is lazy - tell em to read these pages / this post or give me a call.

Stay positive - this won't beat YOU - as it won't beat ME !!

BE STRONG

Sorry to everyone else reading this - but those 'lazy' comments really fired me up.

Take care,

Binx1965


Dear all, I'm having an up and down sort of week, one minute I think I'm on the upward slope, then I feel those old familiar symptoms - swirly head, weariness, ear pain, hissing etc etc; still I've got to stay positive, because there have been some good parts to my days this week - too early to celebrate just yet! Donna, I really feel for you, I think we all think other people don't understand how awful we feel, maybe we don't give into it enough I sometimes think I haven't been enough trouble to the NHS and perhaps I haven't asked enough questions,I hope you feel better soon, it must be tough going with young children. You must not let people allow you to feel so bad, this illness is bad enough without having unhelpful comments from unfeeling people. I am going back to see my ENT specialist next week and have written a letter to him in preparation for my visit as I often come away feeling I havn't got the answers to my questions - so here's hoping, maybe he'll post it in the next edition of the Lancet!(or maybe as my husband suggested - Ears Monthly!) Binx I hope you got some good news and advice from ENT, keep us posted. Hope all the rest of the crew are doing well, best wishes to you all Sue xx


Sorry didn't want to upset anyone with the lazy thing . My sister and brother who I do love camearound the other day and i was having an extra dizzy day and they wanted a drink and I was sitting down as I kept getting spells so I said your going to have to make it yourself and they were like 'Oh Donna your so lazy' and it really peed me off and my dad said it too once he was like 'Donna wont work again , shes too lazy and fragile to work' I just wanted to scream I try my best I wish they could try looking after two children aged two and four with this 'thing' ! Its hard work for a normal healthy person raising children but when you have this its so much harder and I do feel useless and guilty without people pointing out Im lazy or 'dont want to work' I worked since I left school until I had my second child so I have worked before.

I know other people probably think Im lazy and my own doctor told me it was all in my head infront of my mom so wonder how much they believe sometimes . No one would make this crap up my imagination isn't that vivid for a start.

Just thankful to have a supportive hubby I know he gets annoyed with this illness but hes there for me .

Sorry about the rant LOL XX


yeah my birthday is on the 1st and my parents are telling me i need to do something and i feel really bad but i dont know what i can do. beside sit and talk to people... FUN-not i dont really exercise any more since i have came down with lab. i dont drive anymore because i'm worried i might die, or kill someone if i have a really bad moment on the road. it is getting better though but still its very slow progress even though i do have symptom free days now which is nice. i'm just glad i graduated last year or els i'm sure i would have dropped out with this stuff.

but i am happy to be alive and thats all that counts :)

Hello all,

Donna anyone who thinks you are lazy obviously has no empathy for other people, maybe they could help by looking after your little ones for an afternoon!!!! I have 2 girls 12 & 11 so not as hard as if they were small, not sure how I would have coped with this thing then!!! Just ignore the negative comments, at least you have a supportive hubby (luckily I do too) Like you say he gets annoyed with the illness & not you which is very important. xx

Binx, seems like you are suffering, I know what you mean about the 1 step forward 2 back etc I have had this now for 1 year this weekend!!! & although I know I have improved since back then I do still have relapses which are sometimes as bad but mostly on an even keel & suffer more in the evenings so can at least put on my normal face for everyday life. This thing also changed me completely as a person all those things you described we can al relate too, basically its all a bit crap (sorry).

Wendy loved your comment about the spinning chair & vodka in fact I remember (in my younger days) playing that game where you drink vodka then spin round with your head on a pole & run back although obviosly you cant run in a straight line & usually end up in a bush!! seemed like fun at the time, never knew i would actually feel like that without the vodka.

Jemma, Sue, Gloria & everyone else hope you are having less dizzy days!! I am stiil much the same although the nasty relapse from a few weeks ago has subsided slightly just same old same old now & back to using 3 pillows at night!! have that dreaded week coming up so hoping it will be better than last month.

On the plus side must be feeling better than last year as i have been going a bit mad & booking all sorts of hols/wkend breaks/camping trips to get me through the year & give me a positive focus. Taking 4 girlies to the cinema today to see 'Tangled' didnt book 3d viewing though, not ready for that yet :)

Love to all Claire xx


So been away for a while, unfortunately im still in a state of permanent 24/7 rocking disequiibrium 14 months later,, starting a new job next week hopefully it will go well. Anyways i think ive had enough of living with this thing naturally and am seriously considering a SSRI such as Klonapin or zoloft as ive read some research by Dr. Hain that can be tremendously helpful to people with rocking vertigo.


Hello everyone,

Real glad to see some of you pushing forward.

Saw the ENT on Friday. Asked me the usual questions - did some basic tests on hearing / ear pressure / hearing test / dix hailpike manouver / tuning fork thing on my knees and elswhere / walking balance / etc etc etc. Also a physical examination. Typical first appointment i'm guessing.

During the physical examination - he said i looked post viral - think from looking in my throat and feeling my neck glands etc. All the other tests appeared to be in the acceptable range. So possibility of post viral infection affecting the inner ear mechanisms - not ruled out.

Said - he would do an MRI just to confirm that there's nothing that's been missed (again i think fairly typical for a cautious ENT consultant). Wanted to look at my neck as well as the inner ear workings etc. I had a whiplash injury in 2005 - that had an effect on my neck at the time - but cleared up after a couple of weeks. He doesn't know whether it's the ear prob or some 'kick back' from the whiplash that's causing my neck probs but said he would rule it out (or in)with the scan. Thanks doc - i like someone who is hands and gets things done (hands on) - unlike my GP(s) who have never physically examined me once - 'ride it out' indeed - viral infection indeed. I can't knock em - they may be right ! that's confidence for you !! If they are right i will salute their professionalism (hopefully) when all this is over - or at least over enough for me to operate as a productive human being again.

Just for interest (particularly to those with labs related neck probs) this is what he is looking at with the neck - common and can become a chronic degeneration following heavy whiplash injuries. It's the symptoms you may wish to cast your eye over;

Cervico-encephalic syndrome: Sharp headaches, tinnitus, buzzing in the ears, oversensitisation (e.g. to loud noises / light / flicker), vertigo, blurred vision, balance problems, difficulty concentrating and thinking, nausea and vomiting.

When i saw the ENT i was having a reasonable day - as i am today. Hopefully - this is because i am 'picking up' following a few bad days previously. I pushed my doc for the ENT appointment because i wanted to be certain and didn't want to delay any diagnosis or med treatment that could make me better sooner. My GP is still confident that this is labs linked to a viral infection and should just 'ride it out' for 8 -12 weeks (which they seem to think is the norm). I don't like the 'ride it out' bit at all.

Most of you will be aware - i am only currently on week 8 ish - but as you will see i am pushing the docs and NHS where possible.

On a final note. Whilst cleaning my teeth this morning - i had a little cough. The coughing started a whistling / squeeking sound in my head somewhere - like pressure was being released. Eustascian tuble opening / clearing maybe. Never heard it before - lasted about 5 secs then stopped. Haven't felt bad at all today.

The anxiety will need some work - i have gone from no anxiety prior to this - to max anxiety during. I had to pop a valium (diazapam) prior to my hospital trip. The reason for the valium was to get me through my time in the busy / noisy waiting room. I am now on no other meds at all.

Will update again soon.

Take care of yourselves - and each other !!

Binx1965 (Nottingham UK)


S, Gloria, Jemma, Sandie, Shirley, Claire and anyone else I may have missed,

How are you all?! I can see from some of your above posts that you are having some good and bad days.

S I take Zoloft. Started on it 1 1/2 years ago when labs struck. I believe it helped with my recovery. The nerve that gets damaged (vestibular) is the one that takes in serotonin. Zoloft makes your brain produce more serotonin. Therefore more would help heal the nerve that was affected by labs.

I have been great! The only time I feel a bit off is when it is going to rain or snow. I get a bit lightheaded.

I miss you all hope you are having a Happy New Year!!


Hi folks:

Binx...your story sounds identical to mine. Your symptoms are identical, the test results are identical, etc.

I, too, went to an ENT and had all of the "usual" tests. I, too, was told I looked viral, that it was likely "labs" and it will take time.

I, too, was given a standard lyme test from my ENT and was NEGATIVE. This means nothing. Little did I know that those tests miss 65% of the lyme cases. They are very insensitive.

As yourself...do you have any of the following symptoms?:

-Tinnitus? -Ear Fullness? -Neck Pain? -Anxiety? -Back Pain? -Sweating? -Flushing / Chills? -muscle twitching? -GI issues? -dizziness, off balance, drunk feeling? -Visual floaters? -visual disturbances? -Fatigue?

And about 60 other potential symptoms.

There are only 3 tests that are remotely sensitive to detect lyme. The first is a WESTERN BLOT test from a lab called IGENEX in California. (www.igenex.com) Regular lyme western blots from commercial labs are not sensitive enought. There are LLMD's (Lyme Literate MD's) in the UK who use Igenex, or maybe you can find a doctor who can order a test. I've done that for my wife. I was negative on standard tests for lyme, but highly positive on IGENEX. It is the only accurate blood test, and even it can miss 25% of the cases.

The second test is a CD-57 test from LabCorp. This measures the level of Natural Killer Cells in your blood. Lyme patients typically have a low CD-57. Normal is 200 or greater. If it's low, lyme is the cause. My CD-57 was 84.

The third test is a Brain SPECT scan. This is an older test where the inject you with radioactive dye and look at how your brain is functioning. MRI's give us information on brain structure, but not function. Spects measure function and are usually abnormal with lyme sufferers. Usually there is inflammation and poor blood flow in certain areas. My first SPECT was highly abnormal. After 9 months of antibiotics it is much improved. So...if you have labs and get a SPECT scan and it is abnormal, think lyme.

Lyme is in the UK and EU. Most doctors don't know it, don't know how to diagnose it, and rely too much on tests which can't detect it. The CDC in the USA reports 30,000 cases per year in the US, but estimate more than 10x are un-repported. That is 300,000 cases / year. more than HIV.

I'm sorry, but I believe most people on here probably have it. You are all describing it's symptoms to a T. If you've gone uncompensated for months / years, that is just not normal for labs. Don't you want to at least entertain something else may be causing your condition? If it is lyme...you MUST get treatment otherwise the longer you wait the more difficult you will be.

If you see the 2009 Oscar-nominated film "Under Our Skin" (clips on youtube) you will understand why most doctors can't diagnose it.

So...I know some on here are getting tired of my preaching. But I'm trying to help..and if I can just help one person on here it is worth it.

Actually..I already have helped one person. Chuck (who posted above in Nov / Dec) lives in Texas where lyme supposedly doesn't exist. He was told he had labs. He tested negative. But then he went and got an IGENEX test and was positive. He has started lyme treatment and has started to have flares, which means there is die off. He has lyme..he is getting treatment. He will get better. Others on "the Dizzy lounge" are now finding out the same. They've been told for years it is labs, VN, or MAV. It is really lyme for many (not all.)

Please please consider lyme. Everyone on here is describing symptoms. I don't doubt you have labs. But what is the root of that labs? Lyme and related tick co-infections (Bartonella and Babesia) can cause labs.

And remember...a negative standard test means nothing. If you want further proof, get the IGENEX western blot. You can order the test kit on their website. It's free. Get a CD-57 test from Lab Corp. Get a Brain SPECT from a Neurologist.

Check out flash discussions at flash.lymenet.org

Go to medical questions and post your story. Get feedback on your symptoms. You'll be surprised what you'll learn.


Hello everyone,

Please read this in conjunction with my previous post on 30th Jan.

You will know that whilst at my recent ENT appointment to explore potential labs and ear probs - the consultant bacame very interested in the fact that i had been in a road traffic accident - rear end shunt approx 5 years ago.

He put some emphasis on this after i complained of the neck stiffness / ache probs - suspected as arising from my lack of (labs related) balance. It was he who actually asked if i had been in a past RTA - with no prompting from myself.

You will know from my previous post - that an MRI has been commissioned to look at my head and neck.

After getting home i did the usual internet thing to try and find out what he might be looking for with the neck (cervical spine) - and whether or not some of my (suspected labs) symptoms aligned. This consultant was a pretty sharp cookie - not the sort that just wanted you out of the door on a friday afternoon!!

Hey presto - there's all sorts on line:

Please check the following link - particularly if you have ongoing neck probs - or been diagnosed with labs but have had continually clear test results;

http://www.erinelster.com/CaseStudies.aspx?ConditionID=9

You may need to paste the link into your browser.

This link is to a cervical chiro site - with some case studies. I have chosen this because it makes for easier reading. Once you have had a look - if you feel it is / or may be relevant - you can then research / search the technical stuff online. It's some of the symptoms of the cervical spine problems which got me - so close to labs (in some cases) it's unreal.

Please read down the case studies as labs is referenced on a number of occassions.

The long timers may have already looked at this - but i hope it helps someone - with a side condition that docs may be pinning on long term labs / viruses etc.

I now await my scan and results to see what's thrown up. I have also arranged to speak to my chiro on friday regarding cervical spine issues etc - but won't be letting him touch me (significantly) until i know the results from the MRI.

Take care everyone - keep pushing forward in the search for answers and better health !!!!

Binx1965

Hi all,

Back after my few days away on hols. Had a lovely break although weather not brilliant, but just nice to be in different surroundings. Came straight back to major entertaining again - am a glutton for punishment. It was a relative's birthday and we invited over some other people we haven't seen for a while - so it was a whole week-end of Hotel Gloria again!!!!! Why I do it - just want to carry on as I used to I suppose. That said - like Claire - am still suffering from my post Christmas relapse, although not as bad. As Claire said, I have still carried on throughout it all. Sunday when I was in the kitchen doing lunch and turning around from oven to sink to work-surface was giving me major swirlies - just like months ago. But, carried on. Put up and shut up.

Good to hear from everyone and sorry Binx you are having a bad time, but it will get better. Whilst symptoms lurk for a while, you do notice that you are doing more and it just become a bl**dy nuisance. I had all the neck scans done to see if it was my neck, but apart from a little degeneration of the discs - very minor - it is all related to the mis-match of signals between the brain, eyes and balance mechanisms, making the muscles in the body act out of sync. Some people experience this more than others (probably my age has something to do with it as well - lady of middle years!!!).

Have got ANOTHER VRT physio tomorrow. This time she is actually making a home visit to re-assess me?!! Whether she will give me the same old exercises waits to be seen, but at least at home I am on my own turf and will maximise her visit. Waiting for an appointment with a neurologist to talk about my migraines (I'll approach him about the lyme thing Brad - even though I have had a test, but considering you say most negative results can be wrong, see what he says).

Jemma - glad you are having a stable time - a long phase I hope.

Sean - HAPPY BIRTHDAY! Try and enjoy your day. Hope you are having a better time to do so.

Donna - my heart goes out to you. It is awful when people who are close to us don't understand how we feel. Everyone at my home this week-end thought I looked great and because I was cooking lunch for us all, they had no clue that my head was dizzy and near to bursting. I was a fool to myself. With this nightmare condition, I think you have to accept that you have to be quiet and calm and not put your body under too much stress to recover. That is sense, not laziness. From now on, certainly over the next few weeks, I must practice more relaxation to help me get over my post-Christmas stress, which caused my relapse. At least the person closest to you understands - like me - my hubby has been great.

Claire - I think your idea of booking some things to look forward to is an excellent idea. Your hols in May will be soon approaching. I'm still a bit scared of the flying thing. Suppose the only way to find out is to actually do it!!

Keep well and strong everyone,

Love and hugs,

Gloria xx


Gloria...good for you.

Why don't ask to get blood drawn to send to IGENEX? Go to their website and print out an order form. You can pay by credit card and follow the instructions to get your sample sent.

Your doctor will need to sign the order.

Keep in mind that your doctor doesn't know squat about lyme, so is no better at diagnosing it than your cat is. He knows what the guidelines say..that lyme is a big rash, sore knees, and bells palsy. WRONG!!!


Gloria..one more thing...if you don't want to take my word for it, I suggest the following:

-Go to youtube and search for Under Our Skin. Watch the Trailer and then watch an excerpt called "Patients Ignored"..you will see patient after patient that tell how they were misdiagnosed by doctor after doctor with VN, Labs, Fibromyalgia, Chronic Fatigue, Chrones, etc. The reason being, it proves that regular doctors don't know squat about lyme. Many went years of being told it was something else (like labs) or that it was "all in their head" when it was really lyme.

-Go to lymenet.org (flash discussions, medical questions) and tell your story to see what other's feel.

If there is a chance, don't you at least want to rule it out? Imagine if you finally get a proper diagnosis and start to recover.,

BTW...sore neck is a very common symptom of lyme. When I get a flare (very rare now a days), my neck and lower back really start to hurt. The reason being, lyme causes inflammation which MRI's don't pick up. These are all symptoms I had when I was originally diagnosed.

Here is a symptom list again. Check off how many you currently have or have had in the past year:

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular, oval and spreading out (more generalized) Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss Headache, mild or severe, Seizures Pressure in head, white matter lesions in brain (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy, Horner's syndrome) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety

Mental Capability

Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain

General Well-being

Phantom smells Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover


Hi everyone,

Just a quick question. Has anyone had their ear syringed to remove build up of wax since having labs. My right ear (which is my bad ear) has a build up of wax and have been using olive oil for 2 weeks. Dont know whether to leave it and put up with it feeling blocked or to have it syringed as I dont know if it will make the dizzies worse. Would be grateful for any feedback.

Gloria, glad your weekend went ok, more entertaining when you got back, you must be feeling shattered. Did they give you and more VRT to try when they came round to you?

Claire, how did your trip to the cinema go, did you manage to cope with the noise of the cinema, i havent been since having labs, really miss it. If you coped maybe i should try it. A year or so ago before this, never would i think i would be asking someone if they managed to cope with the cinema! What this has done to us i dont know. Have just read Dizzy Spell by Gillian Barnett dont know if this helped or not. Think i feel worse after reading it as it makes you feel very self absorbed in your illness. Good you have lots of outings planned, something to work to.

Binx, hope recovery is quick for you, sounds like you have had fairly good advice. Felt sad when i read one of your posts how much it had changed you. For a working man it must be tough. At least i could give up work as couldnt cope with that.

To everyone else, hope labs is treating you all well.

Love

Wendy XX


Good to read all of your posts.

Looks like it's getting a little lively on here. Some interesting stuff bouncing around.

Brad - Lyme is very much on my radar. It's still early days for me - only being 8 to 9ish weeks in and all. Gonna let em slew through the basic tests - which should be completed in the next 4 weeks - including the MRI etc. By this time - i will be up at week 12/13 of labs - that is if i have not made a recovery (please god) by then. I have to say the last few days have seen an up-turn.

By week 12/13 - should i not feel 90% or above consistently - Lyme is my next "full on" target. I will do whatever needs to be done to get the tests sorted - including calls to the HPA (Health Protection Agency) who are at the front end of lyme in the uk. They should be able to steer me towards the best route for testing and those local medics / experts in the know. The HPA have offices in my county.

I concur that my symptoms seem to align - as do many of the other contributors (past and present) on here. As such lyme should be an option worth exploring - certainly as soon as you pass the 3 month mark with suspected ongoing labs symptoms (or similar). There is nothing to loose and everything to gain.

Many thanks though - for the nudge ....

Wendy - yes I had both ears syringed at 4 weeks in to the labs - both blocked with a sticky wax (not dry / hard). Felt almost completely deaf - but syringing sorted it in a few mins. It was quite a pleasant experience - not what i expected. They have some sort of machine now that very gently pulsates luke warm water. Both ears were done at same time - and felt no ill effects (dizzy / swirly) during or after. Was very happy to have my hearing restored to the best it could be. Had been trying with the drops for a couple of weeks - it was a waste of time - and made me feel even more concious and uncomfortable that my ears / hearing etc was a problem.

As mentioned ealier i have started to see an upturn in the last couple of days - although still feeling quite fatigued in the mornings. Still some tinnitus - but lessens as the day goes on - or maybe my mind just bacomes distracted from it and it's not so apparent. Either way it seems to get less. Done some driving again this week - although just locally and not at busy times. I seem good for about 15 - 20 mins before i start to feel my neck ache - from the bobbling around. Have not driven above 30 mph or in any sort of traffic - this is more a confidence thing now - the more my neck hurts the more anxious i get when driving. When i am driving though - my wife says that the quality of control is good and i seem completely unaffected - which is good to know. In the first 6 weeks of labs i thought i would never drive again - it was bad enough just being a passenger - trying to keep my head down and avoid looking out of the vindow.

Weather forcast of current symptoms / condition - NOT GOOD FIRST THING - GETTING BETTER THROUGHOUT THE DAY - SOME INTERMITTANT DAILY ANXIETY ISSUES - NOTICEABLE EAR PROBS AND FULLNESS REDUCING - SOME VERTIGO TYPE SYMPTOMS STILL FLOATING AROUND - OVERALL A GENERAL INPROVEMENT: SELF RATING MORNINGS = 55% EVENINGS = 70 - 75%.

Meds wise - still popping the odd valium when necessary. Not taking much though - a quarter of a 2mg tab seems to suffice - this is an extreamly low dose. Ibroprufen (just started trying this) seems to help with the neck - just one in the morning. Both these meds do agree with me - no nasty side effects.

Just 2 weeks into the labs doc tried me on prozac - not for the anti=depressant effects - but i think for the increased serotonin benefits. This drug nearly finshed me off - i had a really bad reaction to it. The side effects were horrendous - tremors / sweating / mentally non functional / hightened anxiety (1000 times worse) / no appetite / intense nightmares / nausea / shooting head pains / intense wosening of my balance problems / bouncy castle vertigo / speech problems / panic type disorder. I only took it for 2 weeks - but still also had some degree of withdrawal to look forward to - a sort of fond farewell. Wouldn't recommend Prozac to anyone - not even my worst enemy. Although i do uunderstand it works for some - just not me - having found out the hard way. Will stick to the low dose valium (as and when) from now on - at least the dreams are better and it clears the foggy head.

Just 9 weeks ago - before all this started - i couldn't have imagined myself writting the above paragraph - the most i ever consumed drugs wise was the odd asprin and paracetomol for a mild headaches - now i sound like a full blown addict. Thanks labs or whatever ?

Best wishes to you all - will check in again soon.

Binx1965.


still kinda dizzy when i wake up, more of a tired feeling now but it gets better through the day.... all in all i'm still improving with more, and more days of no symptoms.

today, including lastnight me, and my friends built an igloo LOT HARDER THAN WE THOUGH about half way done. now all we need is the roof which my be obsolete lol. midwest was hammerd with snow, tonight was the coldest night in ten years and we still managed to go snowboarding being pulled behind a car VERY FUN but with side affects of face plants xD

i'll keep up on the 411

Hi everyone

Gloria glad you had a nice break, you deserve it. I can't believe how much entertaining you do but you are certainly very brave for trying! I can just about cope with one or two family members at a time and that's on a good day. However there has been improvement so I am grateful for that and I don't think about how I feel every second of every day like I used to, although still a lot more than I should.

Binx your posts are interesting and entertaining. It is so good you have retained a sense of humour about this. I think at 13 weeks I was still a blubbering mess! For me I adapted quickly to driving again and being in a moving car actually masks the off balance feelings for me. However I do remember in the first few weeks I felt weird in a car and did not want to look out of the windows and kept looking down like you describe. Good news is this gets better and I bet you will be driving properly again soon.

Like Wendy says I do feel really sorry for all you guys out there with this who are the breadwinner. I was so lucky that I was able to give up work thanks to my partner - I honestly don't know what I would have done after trying to keep going for a year with this even part time was too much.

Wendy I have read that book you mentioned. I thought it was quite interesting but somehow not that helpful. It isn't very long is it and kind of feels unfinished because I dont know if the author actually made a full recovery after 2 years?

With regard to the cinema I have been many times with this. For me, I haven't had too many problems with the dark so I have coped with it ok. At first I did feel more wobbly and sat really still but it has improved and I feel pretty much normal sitting at the movies now with the occasional blip.

Binx the neck tightness is all part of this. It may be good that you have been experiencing it so early on because I think that is a sign you are compensating and the muscles are adapting and working harder to keep you balanced. For me the neck pain didn't even kick in until about month 9. Now I am at 21 and a half month and the neck pain has improved a bit but can flare up. Sometimes it feels like the aches are working their way down by body because I have this really strange aching feeling around my heart and chest/diaphragm which I can only attribute to the same thing.

With regard to the anxiety part of this well that is just plain awful and scary. It is basically the brain releasing various chemicals and adrenaline to react to the weird dizzy signals it is getting. Your brain is confused, your body is flooded with adrenaline and this triggers a panic attack and for some (like me for the first few weeks) constant anxiety symptoms. Like you, I tried to keep going for the first week of getting this and in the end the anxiety got so bad I could not do anything. I was shaking all over and movement just made it worse. I thought I was going mad but now I have read so much about this I have rarely heard of anyone with this who hasnt had anxiety and majority of those have never had it before in their lives. I found it gradually subsides, for me over the first few months. It can flare up a bit sometimes but never like it was before. Usually just my heart feels a bit quicker and more pounding than it should but it passes away and I try to ignore it.

Claire, Donna, S and everyone else hope you are doing ok.

Love Jemma xx

Hi everyone

Gloria glad you had a nice break, you deserve it. I can't believe how much entertaining you do but you are certainly very brave for trying! I can just about cope with one or two family members at a time and that's on a good day. However there has been improvement so I am grateful for that and I don't think about how I feel every second of every day like I used to, although still a lot more than I should.

Binx your posts are interesting and entertaining. It is so good you have retained a sense of humour about this. I think at 13 weeks I was still a blubbering mess! For me I adapted quickly to driving again and being in a moving car actually masks the off balance feelings for me. However I do remember in the first few weeks I felt weird in a car and did not want to look out of the windows and kept looking down like you describe. Good news is this gets better and I bet you will be driving properly again soon.

Like Wendy says I do feel really sorry for all you guys out there with this who are the breadwinner. I was so lucky that I was able to give up work thanks to my partner - I honestly don't know what I would have done after trying to keep going for a year with this even part time was too much.

Wendy I have read that book you mentioned. I thought it was quite interesting but somehow not that helpful. It isn't very long is it and kind of feels unfinished because I dont know if the author actually made a full recovery after 2 years?

With regard to the cinema I have been many times with this. For me, I haven't had too many problems with the dark so I have coped with it ok. At first I did feel more wobbly and sat really still but it has improved and I feel pretty much normal sitting at the movies now with the occasional blip.

Binx the neck tightness is all part of this. It may be good that you have been experiencing it so early on because I think that is a sign you are compensating and the muscles are adapting and working harder to keep you balanced. For me the neck pain didn't even kick in until about month 9. Now I am at 21 and a half month and the neck pain has improved a bit but can flare up. Sometimes it feels like the aches are working their way down by body because I have this really strange aching feeling around my heart and chest/diaphragm which I can only attribute to the same thing.

With regard to the anxiety part of this well that is just plain awful and scary. It is basically the brain releasing various chemicals and adrenaline to react to the weird dizzy signals it is getting. Your brain is confused, your body is flooded with adrenaline and this triggers a panic attack and for some (like me for the first few weeks) constant anxiety symptoms. Like you, I tried to keep going for the first week of getting this and in the end the anxiety got so bad I could not do anything. I was shaking all over and movement just made it worse. I thought I was going mad but now I have read so much about this I have rarely heard of anyone with this who hasnt had anxiety and majority of those have never had it before in their lives. I found it gradually subsides, for me over the first few months. It can flare up a bit sometimes but never like it was before. Usually just my heart feels a bit quicker and more pounding than it should but it passes away and I try to ignore it.

Claire, Donna, S and everyone else hope you are doing ok.

Love Jemma xx

Hello fellow 'Labbers'

Well what a pants week!!!! Full on vertigo on Sunday morning exactly 1 year on from the very first swirly attack (last Sunday in Jan 2010) AAArrgghh!!! Almost like the little blighter is just reminding me 'Its still here' Also today started with symptoms of a cold which was a wierd relief in a way as at least I think it explains the sudden vertigo. Wendy the cinema was fine I am always unsteady in the dark with this but then always have been really. i think you should set yourself a little target, just to get back at the labs. There must be a film you would particularly like to see at the moment. lots to choose from, go on try it whats the worse that can happen?? Let us know how it goes :)

Gloria glad you had a nice little break shame about the visitors straight after though! I have some more coming for half term, but then I am going away to stay with my oldest girlfriend who lives near Brighton so really want to feel okay for that.

Jemma how are you at the moment is it on an even keel? I am hoping once my cold has gone that maybe I will feel extra better (maybe wishful thinking)

Binx your weather forecast is exactly the same as in my part of the world!!!

Anyway heres hoping for a quick recovery & back to some kind of normal

P.S lovely to hear from Melissa a success story at last!!!

Claire x


Binx...I'm happy to nudge and glad to know you are seriously considering it.

I had the stiff neck, wicked anxiety (never had it before), dizziness, etc, etc. All of that is now GONE with 9 months of lyme treatment (and counting.) It is physically a side effect produced by lyme and bartonella, and sometimes babesia.

Oh yeah...and for what it's worth both Chuch and I were on upswings from labs (as you are know) when we tested positive. If you wait long enough, you will go down again. Lyme is famous for a waxing / waning / migration of symptoms..usually every 4 weeks when it replicates.

One thing I just noticed which concerns me is from ISH.

ISH...back in November, you mentioned how your MD in Aussie said if you really had lyme for 2 years 'its too late'. Absolutely untrue!!!

While the longer you've had it, the harder it is to get rid of, I've met many who were misdiagnosed for 5-10 years who are now 100% well. (and others who still struggle.) But you can get well even with long term infection.


Hello everyone,

Thanks for the messages.

Yes it's still well and truly on the radar Brad - I will give the docs / consultant the benefit of the doubt until the end of the month - when all the basics are completed. Next visit with my consultant - i will be pushing it - particularly if they give me the inconclusive / ride it out / virus story. I will then be asking for the lyme tests etc.

Has anyone else on here - been down the lyme route since being given a labs associated diagnosis ?? particularly any of the long timers ?? what was said when you mentioned it to your doc / consultant ?? Did you go through with it ??

Many thanks,

Binx1965

Hi all,

Afraid this will be brief as am having to use a friend's laptop - our wretched computer has crashed AGAIN! Now, my hubby thinks he knows exactly whats wrong and needs doing - he said this last time!!!!

Anyway, Jemma, you really sound like you are doing so well - at last! Although, like me, my muscles are tight in odd places too. About time you had a turn around for the better. Are you able to do more in your day now? Have you started to do more aerobics/exercise?

Claire - my heart goes out to you. My blip - relapse more like - post Christmas is dragging it's heels too. Even though I am functioning day to day - you still know this little 'b' is around. Certainly your cold sounds like the instigator. I just want to know when we can get colds etc without this thing impacting! Patience is truly a virtue - never has mine been so tested. Hope you feel better very soon - big hugs oxox.

Wendy - lovely to hear from you too. I have had my ears syringed - for many years my left ear which is my affected side - would always get blocked and had it done. Even last year - no probs. The warm water is quite comforting. Probably made me very slightly lightheaded than before but nothing major. The VRT physio came to the house on Tuesday. As I haven't seen her before, I had to go through the whole story AGAIN!! How many times that is now I've lost count. She is coming back next week as we ran out of time. However, she thinks my migraines are definitely hampering recovery for me. (I've got a neuro appt coming up). However, she said the exercises I do to continue for the moment and she will evaluate next time, but said the side to side, and up and down head thing was a must, as was standing with my eyes closed, then on one leg (alternate) for at least a minute. Then walking around in a large circle focusing on something in all corners - one minute one way then turn around and do the same. She says that many people get so bored (as I have) with doing them, they don't fully compensate as they stop. She said this can take a long time, but they must be done daily without fail for at least 5-10mins. Apparently if you don't then the brain doesn't fully compensate and to wait for it to happen naturally is a bit of a lottery - oh joy!! One person says one thing and someone else differently. So head shaking continues!! Perhaps I should become a heavy metal rocker and rock and shake my head back to normality LOL!!!!

Binx - you sound such a philosophical person with all this. Good for you. At the beginning of all this for me, I went to see a private ENT and neurologist. Couldn't wait for the NHS - it was all too scary. Basically, the neuro first of all got me to have a whole bunch of blood tests as there are quite a few things that can cause these symptoms, not just Lyme. This test cost me £1,000!!!!!! The lyme came back negative. On the back of what Brad says, I went to see my doctor again the other day and talked to her about it. She is quite an experienced doctor. Anyway, again along with a raft of other blood tests, she has got me to have a lyme test which has been sent away. Now, I know Brad says most test results cannot be relied upon and I did broach this with her, but she says they are very comprehensive. At least this time it is on the NHS - have no more money in the kitty to pay privately again!!

Love and hugs to all,

Gloria xx (may not be able to post for a few days - see how hubby gets on!!)

ps - Binx - what I forgot to add is my Doctor thinks it is very unlikely to be Lyme and more my body being under stress causing all the other things I get like the sweats (not at all major now), upset stomach (again not major now at all), anxiety etc. These are all very associated with labs as the sympathetic nervous systems in the body are reacting to basically what is mis-programmed information to the brain between the eyes, balance and muscles and body co-ordination. At least it ticks another box though I suppose.

Gloria x


Hello everyone,

Just thought i would give you my history with this thing;

Mid - End Nov 2010 - Had the flu for a week.

End Nov / Early Dec 2010 - Had what appeared to be a chest infection with barking cough - this lasted nearly 3 weeks. Didn't bother with the docs - rode it out and eventually seemed to go away.

Early - Mid Dec - Had a week feeling relatively OK

Mid Dec - Started to feel fatigued in the morning when getting up for work. Mentioned to wife that i thought i'd picked up something up again. During this time the bugs were circulating like crazy at work in a large open plan office. Lots of people going off sick with this that and the other. At the same time my neck also started playing up - particularly when my head was bobbing around - driving. I was constantly trying to massage the knots out - but it just seemed to be getting worse. Like my head was twisting and there was a weight pulling it down at the back. There was also a feeling of being unsteady on my feet - we also had a lot of snow down at the time and i put some of the blame on this. Kept going to work - although i felt i was really struggling and felt quite fatigued. Both of my ears were becoming blocked with mushy wax and there was also some mild tinnitus in my left ear. (This all seemed to happen over the period of one week).

Mid Dec - Went to work one day feeling dreadful. Had a meeting first thing in the morning for one hour which i just managed to scrape through. I had a mild headache, stiff neck, balance seemed off and my vision was not 100% - more around the focussing end. Went back into the large office area - florecent lighting - lots of noise - people moving around etc. After 10 mins staring at the PC a colleague came up to the side of my desk - as i turned the swirlies started and everything started shifting around. My body must then have automatically engaged a panic mode as i felt my BP rise and my chest start to tighten up. It's a heart attack i thought - yet i was in no particular pain. Hypervent also kicked in. My body had gone into panic mode all on it's own. It was scary. I just about managed to make it (stagger) to the first aid room - 50 yards away - and get on the couch - it took about an hour for me to make it through the worst of it. A colleague then drove me home.

On arrival home my wife called the local GP. He came out within the hour. I was lying on the bed dazed. He did some basic checks - said i wasn't having a heart attack or stroke - and to call in and see him in a few days - after resting up. In the meantime had ECG / blood tests arranged - results - normal.

Had a few more episodes of the swirlies - one woke me - my body agsin triggering it's fight or flight reaction.

After a couple of days at home - mostly in bed i made it down to my GP's surgery. I went through the story above and also added that i now seemed to be racked with anxiety type feelings. Even though i had given him the full story he seemed to concentrate on the anxiety and panic type elements. Also told me to go get a massage on my neck if it was bothering me. I told the doc that i didn't do anxiety and panic - never had - never will - it's not in my character. He said it happens to the best off us. Prescription PROZAC. Said it would help me relax.

Had another attack of swirlies and panic type symptoms. Hospital visit - another ECG - normal.

Took the prozac for 2 weeks - it nearly put me in the grave. Scroll back a few posts where i have covered this in more detail. Absolutely - shocking experience. Stopped taking it - before it took me !!

Early - Mid Jan 2011 Went back to the GP now with my wife in tow. She would sort this out !! I needed her in there to prove to him that i was neither a depressed, anxious or panic ridden individual - not prior to the prozac anyway. He told me to go home and rest. Gave me a script for vallium - to use as necessay whilst the prozac amplified anxiety drained from my system. It takes a while to leave your body even after 2 weeks consumption - so the side effects hang around a while - prozac has a long half life.

A week later i went to see a different doc. Who announced within 5 mins i had viral labs. Looking at the symptoms, history and via examination she was 1000% certain. My blood tests were good for all the basic checks etc and that i needed to ride it out. Gave me a script for some anti vertigo drugs and told me to go home and wash the car - and basically ride it through. Said she had seen 8 cases within the last couple of months. When i mentioned the prozac story it caused some hillarity. She said it doesn't agree with everyone - particularly if you are not suffering with depression etc etc etc. I could have wept - in fact i think i did - i was not going mad after all.

Had 5 or 6 GP visits since with the labs symptoms. Been told 8 - 12 weeks of 'ridding out' should see me through the worst. I asked for a referal to an ENT specialist at week 6. I saw him over a week ago at the end of week 8. Usual tests on first visit also MRI booked. Told to keep riding it !!

Meds now - the odd valium and ibroprufen for the neck.

Some early improvement was set back during the (missing) prozac haze. Feel to be improving again now - although mornings are worse. Chiro seems to benefit my neck probs - but not every time.

My previous posts above cover the recent events and developments. Just though you should know the front end !!!! What a ride it has turned out to be !!!!

All of your comments I have taken on board and will use them moving forward - for this i thank you all !! This forum and it's history of posts has been absolutely invaluable.

Gloria - many thanks for your recent feedback.

p.s. Brad - ive not forgotten about the lyme !!

Take care,

BINX1965


Hello everyone,

Just a quick update to give you my current labs weather forcast;

Mornings: Some mild T on waking - now sleeping with one pillow to ease the neck - which has caused a slight increase in the morning T. Feeling of moderate fatigue still hovering around - can take a while to get going. Eyes and focus reasonably good to very good. Some mild instability on first rising - but disappears quickly having moved around a little. Neck pain currently mild to moderate. Head pressure / ache currently very mild. Ear drums feel sensitive - but not exactly painfull. Having said all of that i would rate myself over the last 2 days - mornings 65% of normal.

Daytime: Improving from morning - as energy level increases. T starts to reduce and is absent for long periods. Short driving expeditions being accomplished (10 - 15 mins - non busy times). Some anxiety / anxiety type symptoms hovering around - feel these are becoming moderately restrictive to certain areas of progress. Rest breaks being taken e.g. half hour here and there on bed. Shops - forced myself into 3 big stores (fluorecent lighting / very busy - the lot) with the wife yesterday - first store felt a bit swirly and i wanted out after 2 mins - but decided to hang around and see what happened to my symptoms - wasn't bothered if i collapsed into the clothing rails / displays etc - i needed to see. The vertigo / swirly symptoms rose and then hit a plateau level - which they didn't pass. Once i got used to it i started to look around and move around slowly - no problem - managed to ignore the symptoms (ha ha labs i got you now !). Next 2 stores were the same - just plateaued out with the swirl - and rode it. Whether it's needed or not - looks like i just started my own CBT and VRT crash course. A few weeks ago my symptoms (coupled with anxiety) would have pushed straight through the roof - no plateau - i tried it ! TV watching is easier - although not on a big screen - still sicking with the small one in the bedroom. Day time headache / pressure will reflect day time activity, rest periods and loading on the senses. The same goes for the neck pain. Some very mild sweating - mainly palms - almost like i'm anxious - but in reality i'm not - brain chemicals / signals are still obviously slewing all around (Gloria - thanks for tipping me off on this one - i thought the male menopause was kicking in !). Some odd very very mild ear pain - maybe it's not pain - but a feeling that somethings going on indide there. I would rate myself over the last 2 days Daytime: 75% of normal.

Evenings: Depending on daytime activities - i start to slide down with some tiredness an fatigue. Depending how i'm feeling may go out for a short 30 min walk. Last night went to a friends (just round the corner) to help him fill some forms. Sitting in close proximity with someone talking away whilst i looked through the docs really started to get to me after a while. Couldn't concentrate - he also had a 20000000 inch plasma TV screen banging away close by. Got through it for 2 hours - but wanted to go home and lie down - head banging. Evening rating 60% of normal.

On a lighter note: I went to the local hospital for the MRI the other day. I've had a couple of MRI's previously (ankle / back) so knew exactly what to expect. To ease any (labs related ?) anxiety i popped half a valium tab about 20 mins before going in there.

They went through the pre-questionaire and bungged me on the table. My pre-selected MRI head-phone music being Led Zeppelin's greatest hits. As i entered the tube to the strains of a Jimmy Page guitar solo - a feeling of euphoria washed over me - ahhhhhhhh the valium !! As the machine started buzzing and banging - i kept bursting into fits of laughter - each time it buzzed i laughed and giggled even more - it was sureal. They had to start again - twice - i couldn't hold still for laughing. The guy who was overseeing the test must have wondered what was happening - only a few mins earlier i had been telling him how seriously bad i had been feeling for the last 7/8 weeks (suspected labs) and this being the reason for a perusal of the inner head workings etc !! I would've loved to have been a fly on the wall in the control room - i don't think they found it as funny as i did for some reson !! As i have mentioned earlier valium does agree with me - no drowsy stuff and zero anxiety when taken. Scan rating: 150% (superb)

Note to self: Need to either - see doc for more valium - or get rid of it ASAP.

Currently on week 9 - 10

Will check back soon.

BINX1965 x


Binx and all:

Thanks for the update. To answer your question, Binx, I believe just Chuck and I are the only people on this board who were originally given a Labs diagnosis and it was really Lyme & co. (Babesia and Bartonella too.)

But, I have since met others on the lyme boards and other dizzy boards. There is a thread on "The Dizzy Lounge" where more and more people are confirming lyme.

As far as resources, I would read / study Dr. Burrascano's guidelines located here:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

This is considered "the Bible" of lyme. Dr. B's protocols have cured thousands who were sick for sometimes years. It explains symptoms, why tests are so bad, what tests to do, and how lyme is ultimately a clinical diagnosis. It also discusses treatment

For labs, I believe this is typically lyme with Babesia and perhaps bartonella. The sweats, spaciness, etc is babesia. Anxiety is lyme and Bart. I have all 3.

Regarding testing...please realize your regular doctors don't know anything about this complex disease. There are a few LLMD's in Germany and the UK who do know, but that is about it. I will see if I get names.

Here is a great study which describes why testing is so poor. Basically, the standard tests don't look at enough bands consistently. And..lyme attacks your immune system, like HIV, so it is often not producing antibodies which the tests are looking for.

http://www.springerlink.com/content/w64170894v08654g/

Hi everyone

Sounds like its snakes and ladders for everyone. Claire hope you are pulling out of your blip. I have slipped down slightly these last couple of days. No apparent reason for it but just a bit more swirly headed than I was. Still we know the score now.

Gloria hope you are still doing ok. To answer your question, to be honest I am not really doing much more in my day nor am I exercising except the usual VRT twice a day. Everytime I have tried to exercise even slightly I get discomfort in my left diaphragm and round my back. Dont know why!

Binx your posts make me smile. Like Gloria you write in a lot of detail and I can relate to lots of what you say about the symptoms. Basically as someone who is well into 21 months of labs/VN my advice to you would be as follows. This is based on what I have learned in my own experience:-

1. Getting a diagnosis is key because then you know what you're dealing with. I didn't get mine until 9 months in and my state of mind until that point was desperate, anxious, depressed and crying. If someone could have said to me from the beginning what was wrong, how to deal with it and what to expect it would have been so much easier.

2. Take comfort from this site and others like it because I did not find this site straight away and it really helps psychologically to read other peoples' experiences.

3. Unless you are in a very lucky minority don't expect to find an ENT who knows much if anything about this condition or to diagnose you. Push to see a neurotologist or a neurologist. Do all the vestibular tests and get referred for VRT. You are still in the early stages and maybe you will be lucky and get over it quickly, well quicker than some us on here!!! I kind of had a gut feeling mine was not going anywhere quickly and unfortunately I was right. However even if you don't see fast improvement, take heart that you will improve. I have found that what was once a 'good day' is now a 'bad day'. It's slow going and so many times I have wondered if I will ever be 'me' again but I still have to keep hoping.

There are millions more things I have forgotten or could say but I won't go on for too long as much of it I have said in earlier posts. Hope it helps a bit.

Ashley, how are you at the moment? Did you sort out anything with your work?

Everyone else take care

Jemma xxx


Hi all

Well for the past couple of weeks I have been totally up and down the old snakes and ladders board. One minute I think I am doing really well and the next I'm back on the good old rocking boat!! I think my neck definitely plays a big part in my bad days and I have most certainly felt worse with the terrible winds we have been having here in West Yorkshire. Why does the wind effect dizziness so much??

I actually need some advice from you guys. My private consultant told me in October to start VRT therapy but suggested I did it on the NHS as I had already paid a lot of money in hospital fees and had no medical insurance. Anyway my GP referred me to my local hospital and after an initial consultation I am STILL waiting for an appointment. I am now thinking of paying for the treatment privately but I want to make sure that it will definitely be worth it. So do you guys really think that I will benefit from VRT therapy after 9 months of this illness?

Jemma - I went to see my doctor a few weeks back about a phased return to work but he did not think I was strong enough. Anyway I see him again in a couple of weeks to discuss doing a few hours at work a few times a week and then gradually build it up. Am I ready for work? Do I think I will cope? Truthfully... NO!! LOL!! I have to try though otherwise I will regret it.

How are you doing now? Do you hope to return to work at some point?

BINX - I can relate to so much of what you say. When I read your posts I think that was me! Keep strong, lets hope you are one of the lucky ones that recovers quickly.

What I have been experiencing lately again is the hot flushes and tingling that brings along a wave of nausea. I am not dizzy when this occurs so I don't understand what is causing it. It does worry me because I feel awful when I get these hot flushes. My mum joked the other day that I could be going through early menepause!! I'm only 24 years old!! My body temp is always also generally high lately. In bed I am always so warm. I could understand these symptoms at the start because I was fighting the infection but what could be causing them now? Is it possibly a bit of post viral syndrome? That could also explain the horrible fatigue I sometimes experience.

Gloria/Wendy/Claire/Shirley and the rest of the crew - hope you are all well.

Take care all

Ashley xx


Hi there! I have been reading your comments for the last 3 months and was afraid to comment myself. I have been suffering with weird vertigo type episodes for that long and felt alone in my world. It started months ago with just a few scattered dizzy spells that I chalked up to blood sugar and then in late Oct got dizzy more and more until November when it went into full swing. I don't feel the room spinning rather I feel like I just got off a merry-go-round. Lately it has changed to a fog that creeps in my head and I feel like my head is being pushed down and sometimes to the side. My vision gets strained when it happens. I take a sedative and it usual feels much better for the rest of the day, but some days are worse then others and it lasts all day. The symptoms aggrivate my mild anxiety into severe anxiety! I was first diagnosed with Labs, but today the ENT said he is no longer thinking it is inner ear and is sending me for a brain scan. I think that scares me a bit more. I have been unalbe to work more then a few hours a month and am a single mom. I'm tired and stressed out and don't have much of a support system. I'm sorry to go on and on, but it feels kinda nice. Any feed back would be great. Like all of you probably feel, I just want to be me again! Thank you so much for listening. B


I tried to post before and it did not. I'm trying a small post again to see if it works. Thanks for the patience!


okay so i do feel like i'm getting SO MUCH better... but does anyone wake up at night feeling relly wierd like tired but wide awake and you want to sleep but cant?


Hi folks:

Here are some EU resources for lyme that I have found.

http://health.groups.yahoo.com/group/EuroLyme/

http://www.lymeinfo.net/international.html

United Kingdom:

Lyme Disease Action

Website: http://www.lymediseaseaction.org.uk/index.htm

I have the name of a new MD's in the UK who do treat it, but the reviews aren't as positive as I'd like. Apparently they are not agressive enough. Apparently most go to Germany / Switzerland for proper treatment.


Hello everyone,

Bored - so fanncied posting something - and posing a few questions ?

PLEASE do not feel obliged to answer all or indeed any of the questions. If you just want to reply to one question area that would be of help / interest.

The questions relate to recovery times from what is being called / diagnosed as labyrinthitis.

Official medical type pages on the internet talk of a recovery time from labyrinthitis of 3 - 4 weeks.

Seemingly non official medical type pages on the internet talk of recovery times for labyrinthitis of between 8 - 12 weeks.

Discussion forums on the internet covering labyrinthitis and inner ear disorders seem to talk about recovery times of 3 months and upwards.

Question(s): why the big discrepancy ? is it that no one really knows what's going on and labs is just a catch all for some inner ear prob ? Is it that everyone is different and just recovers within their own time - given nature of damage and individual immune system strength ? Does the virus get knocked out within a given time scale - and it's just the damage (uncompensated signals / chemicals imbalances / post viral symptoms etc) that we are living / coping with afterwards that carries on ? If you have had this long term - is there still a viral element hanging around - or just the inner ear damage etc) ? If the virus is gone - why do people still complain of tiredness / fatigue ?? Why are some docs (general practitioners - not specialists) confident to give a diagnosis of labs straight away - without referring to a specialist and undergoing loads of tests ? Why are some ENT specialists still clueless - when this seems so common - is it because it does not fit exactly into a box like some other inner ear conditions ? How is labs brought on by stress as seems to be suggested on some of the official sites - i can imagine it being made worse by stress - but not brought on by it - it's viral or bacterial isn't it ?

Anyway - that's my brain emptied for the afternoon. Apologies in advance for the questions - especially the ones where i think i already know the answer - but would like an alternative spin.

Killing some time with a few VRT exercises (pulled from the net) this afternoon - what's the harm !! Felt up at 85% today !! Could be i'm an 8 - 12 week type ? Here's hoping !!

Standing on one leg with my eyes closed is still a laugh though !!!!!!!!!!!

Take care of yourselves,

Binx1965

Hey everyone

Well I wrote a long post yesterday but it doesnt seem to have been posted so I will start again but it's just going to be a short one today as im feeling rather rotten! I've been up and down for the last couple of weeks; I would say I have had more good then bad which is a bonus but I have been constantly bad now for 4 days since the gales began here in yorkshire. The winds have died down today but for some reason my head hasn't :-( I've had the swirlies really bad. Why does the wind effect our dizziness? I can understand it causing pressure in the ears but not dizziness. Or is it just me looking for an excuse again?

Anyway I need some advice. Does vrt work when you start it late on in the illness? I ask because I'm thinking of paying private again. I've now being waiting 5 months on the nhs for an appointment!!

Jemma - I went to my GP a month ago to ask if I could do a phased return to work and he did not think I was strong enough. He was right! Anyway he has agreed to consider letting mr back for a couple of hours a day in a couple of weeks time if I'm ok. Do I think I can cope?.. Honestly no! Especially not the way I feel today, I can barely move around. But I know I have to try because there is only so long I can cope with no money and I desperately want to finish my qualification. How are you anyway? Do you hope to return eventually on a part time basis?

Everyone else - I hope you are feeling better than me! Lol!

Take care all

Ashley x

Hi all, Still on a loan laptop - no sign of the main computer being functional at present! Daren't ask hubby for an 'E.T.A.' on when it will be working!!!!

Binx - viral labs sounds spot on. More or less like me - upset stomach for a couple of days, then a few weeks later major headache, sickness and a chest infection from hell. I have never smoked, but sounded like I had been on 50 a day!!! After a few visits to doctors did one say she thought it was something called labyrinthitis - never heard of it. Basically, all the people and specialists I have seen through all of this do not know and have never been able to say what a huge raft of odd symptoms people can experience. As Jemma said, if someone could tell you right at the beginning what to expect like the sweats,odd head pains and feelings, neck stiffness and muscle aches etc etc - it would have been a lot easier to deal with.

One small piece of advice from me Binx would be to ease off the valium if and when you can, as this can interfere, if taken a lot, with the compensation process of your balance. I have had horrendous reactions to meds given to me including Prozac. I have taken with some success and no real side effects, is Amitriptyline 10mg. It was given to help with my migraines. It hasn't worked for that, but helped hugely with the anxiety issues, gives you good sleep. I should take it ongoing, but take it for 2-3 months to get me back on an even keel then reduce off of it. I hate taking meds to be honest. The other thing with this is that it doesn't interfere with the compensation process. So maybe try that rather than valium. What I take also is just a herbal valerian which I buy from Holland & Barrett. It's called Valeria for day-time stress and made by a company called Pharbio (?). It stinks but a couple of tablets twice a day helps. Just suggestions though. Love the story of your MRI - priceless. Know how you have to be absolutely rigid - so can imagine the technicians didn't appreciate your euphoria!!

Ash - sorry you are still having such a bad time. Do keep hope it will get better. As Jemma says, what we considered good days a few months ago are now what we think are bad. It is just so snail like in getting better with the rotten big dips along the way. VRT will help at whatever stage you start it - you just have to be relentless in doing it EVERY day!!

Jemma - I should have kept quiet, but hopefully a small blip. Weather so impacts on this. My latest VRT lady said the main things that impact on how good or bad you feel apart from over tiredness and stress, is the weather and hormones!!

Anyway, me - been to the gym, power walked 2 miles today (!!!!) - don't know how long this will last, but need to get fitter and not slump into a world of not doing anything until I'm 'better'!!

Positive thinking in vast amounts required! Onwards and upwards. Take care all.

Love & hugs, Gloria xx


Would like to post, but am having trouble.


Hello everyone,

A few of my posts seem to have dropped down a hole somewhere. Big thanks to everyone on here for their info / advice / encouragement / experiences. Gloria - you seem to have been through it all at one time or another. A veritable mine (or is that minefield) of inspirational knowledge / info now to hand.

Ashley - you mention VRT. I am early on with this labs thing - but i started doing some self VRT commencing 2 days ago - figured what harm can it do. Can't wait around for the NHS to tell me anything. Loads of examples on you-tube and the net. Feel better already - and will carry on unless someone tells me to stop. I feel my eyesight and coordination and balance sharpening - even after 2 days. Spending 1 hour late morning and 1 hour in the evening - combining the various exercises - not just the eye / head stuff - but also the various walking (head turning) combos. The tight figure of 8 was interesting the first time i did it ! I am pushing each one until slightly dizzy / vertigo-ish then resting for a while. After completing each session i end with standing on one leg (eyes open) for one min - then on one leg with eyes closed for as long as possible (be careful where you do this because of the falling risk) - taking turns with each leg. With the eyes closed - i guess you are then just reliant mainly on the ear balance mechanisms - i am using the eyes closed bit to measure my progress - it may not be a good way of doing it - but it's something more than nothing. Hopefully - my brain is learning something new and re-programming accordingly.

My ENT seems to figure that your balance is acceptable if you can walk without falling over - with no regard to any dizzy / vertigo-ish feelings swimming around in your head.

Just take your time and don't push yourself too much.

Getting down the gym (as Gloria suggests) must also provide some self VRT and other benefits. Just the environment, general atmosphere and some of the exercises must not only help with overall balance, coordination and stamina - but also with draining out some of the anxiety related rubbish.

Try to eat well if possible - although i am aware from various posts on here - some people struggle with poor intake - indeed wasting away. If you are struggling to consume - then make sure you are popping a good multi vit.

As you live in Yorkie (God's Country no less) - Get yourself along to Bridlington and Scarborough promanade(s) at the weekends. The walks and the fish n chips will do you the world of good. Just remember that hat with ear flaps if the winds blowing. Only kidding about Brid and Scar - but something similar (walking wise) may be beneficial.

Like you - i just wish i could wake up tommorrow and it all be gone !! I am sure one day it will be - but with a bit of pushing i am hoping that day will be sooner rather than later.

Gloria - on a final note. The chronic neck pain i was experiencing from the start has almost completely abated over the last 4 days. All i am getting now is a slight sensation of the thin muscle layer pulling / flexing under may scalp. Maybe it's all re-configuring as my head balance starts to sort itself or it's the 'out of balance' signals have changed from my ears /brain. Eyesight is sharpest it has been in months 100% of normal - maybe my self VRT is helping with that. Headaches if any are very mild. Still some T hanging around - but not the constant companion it once was. I also concur with others on here that weather conditions do have an effect - it can vary my general feeling of wellbeing / health by at least + or - 10% on any given day. Some very mild pressure / pain feelins in my ears - now and then - but so mild hardly noticeable. My ear drums still feel sensitive to cold / wind etc. Still feel somewhat fatigued in the mornings - even after a good nights sleep - but by mid-day this has completely passed and doesn't return until late evening. As for the valium (ahhh the valium) i now only take a little nibble now and then - not every day. When i do it's usually a quarter of a 2mg tab - so 0.5mg - and only when i think anxiety will get the better of me. I need to knock the stuff on the head completely ASAP - but at present need to keep it close by - just in case.

Ahh well enough of me banging on.

Up the ladders !!!!!!!!!!!!!!!

BINX1965

Hello all,

Just a quick update> Went for VRT today went in thinking what a waste of time I'll make this my last appt, came out thinking right lets hit this thing so will be doing my VRT everyday til my next appt in 6 weeks!!! Had a good chat with the therapist & she really thinks the blips are more frequent as my brain needs to compensate & it isnt on its own, if the 6 weeks doesnt work then I will give up but if I see a real improvement then I will keep goiing til its gone completely. Something has to work!! Still swirly etc the weather is a big factor, Ashley & my therapist confirmed this for me today, along with health (colds etc) & hormones!! I would try for VRT if I were you I am happy to send you a copy of my exercises if you inbox me your address. Also have some neck & shoulder relaxation exercises to help with the tightness in my neck, so a little more positive today :)

Jemma & Gloria sorry your both in a blip too at the moment i blame the weather, gloria well done on your exercise thats brilliant & it cant hurt can it? I am still going to the gym regularly it def helps me even though i still need to lose a stone!! This time last year I was on my way to losing 1.5 stone how quickly that all went back on!! Oh well at least I dont feel as terrible as this time last year :)

Hope everyone else is okay

Claire xx


Hello,

Reading all of your experiences is a huge relief. I have such varied symptoms and the ENT has me feeling like Labs is black and white with specific symptoms and lasts NO LONGER THEN THREE MONTHS! I think he may be very mistaken after reading all of your stories. I cannot imagine having this for years. I'm so sorry that some of you have.

I hoped so badly I would be recovered and back on my feet in a few weeks, but it has not been so. I had a "relapse" in January after a bout with a very unpleasant stomach flu. I don't sleep at night, sometimes my ears feel as though they may explode, I have developed this congestion in the evenings that last until morning and my muscles are stiff and sore. I feel rather like I've been beaten, in an all around sense. Knowing that it is normal to have these relapses and odd feelings make me feel less "crazy". Thank you for your stories and any feedback you can give.

I try to be as active as possible, but am nowhere near where I'd like to be. I hike when I can and I am able to keep up on the house work. I feel like I should be doing so much better at 13 weeks. I wish I could go back to work as the stress is at a very high level and somedays seems to make it all a bit worse.

My teenage daughter is so patient and suppotive of me, but she is a hard time with the length of all of this.

Thank you for listening!

B


hello everyone!

I was diagnosed with labs in June 2008...Ive had it ever since!! Im a guy, I am now 25 years old..so its almost been 3 years!!

The dizziness does improve and will eventually go away..but youve got to stay active.

But with me after the first 6 months something happened to my legs...they gave way and there was just comprehensive weakness in my legs. I dont know what it was...some kind of muscle disease which was triggered by labs..who knows...but it has pretty much ruined my life.

My legs have been recovering ever since..but never been the same...I fear they will start to deteriorate once again.

All the scans have come back fine...my neuro says its nothing...erm I can barely walk!

This experience has taken almost everything away from me...it is a blessing!


Hello everyone,

B and KAM if you are new stick with these pages - there is a wealth of knowledge and experience dipping in and out of here - which will be of great benefit and comfort. You are not going nuts !! A good starting point is to read all the posts (pages 1 -13) if you have not done so already !

B - there looks to be nothing unusual with what you are experiencing - you will read about the 'snakes and ladders' effect of labs in detail on these pages. In addition - it seems like any sort of illness during the recovery period causes a setback - and a slide down a snake. But you will bounce back up. I have done some 'up and down' recently myself.

KAM - I am only at week 9/10 with this thing so not sure if the leg probs are associated. I do know people who after long illnesses that have suffered from CFS and this has affected their mobility etc - but i would only be guessing. Someone else on here may be able to offer a better insight / support - if what you are experiencing is labs related or not.

I have a quick question about driving if anyone can help ?

You will note from some of my previous posts that i have started to do a bit of driving - 10 to 15 mins in the evenings - nothing too heavy just around the local area - not too much traffic to contend with etc. This has been OK.

Last night thought i would push it a bit more. At the 20+ min mark i got a head swim and feeling of lightheadedness - and had to pull over - when the head swim started (i could feel it starting) the anxiety and panic reared itself - although not to anything like a full blown attack. After getting out of the car and sucking on a 'silk cut' for a few mins to allow the anxiety to subside - i got back in and continued home (5 mins). Upto this point my driving had been excellent. A feeling of unsteadyness (vertigo-ish) then stayed with me the rest of the evening - but by morning was completely gone - and i feel reasonably good again. I had felt confident and relaxed upto the point of the 'swim' and not at all anxious - it just came on ! As i am sticking to the local area i had been cornering a lot - and also lots of stop / starts / junctions / head turning etc. In addition - by sticking to the suburbs / local area i can stop safely almost anywhere if there's a problem of any kind - so certainly no dangerous stuff - or worries about having an accident etc.

I have never suffered from any sort of driving anxiety - so this is directly linked to the labs stuff and associated sensory / chemical triggers.

Can anyone out there who re-started driving after the chronic / initial phase of labs - give me an insight into how it went for them ? Any tips would be useful. Did anxiety / panic cause a problem - or was this only triggered if the swimmy stuff started whilst behind the wheel ??

Anything would be useful ? How did you get fully driving again ? Jemma - i think you and 1 or 2 others have been through the driving stuff and come out the other end.

Many thanks,

BINX1965

Hi all,

Welcome B and Kam. Myself and others on here can only share your plight and know exactly how you feel.

B - you are so right about the lack of wide experience ENTs have. When I paid to see a private guy right at the beginning he said it would be over in a few weeks especially if I saw the VRT physio and did the exercises every hour, I would see the back of it after 3-4 months!! Ha ha ha!!!! That was a ploy to make even more money out of me by seeing a private VRT physio (£85 per hour every week)! I'm not downing VRT because it certainly helps, but to push you into seeing someone more regularly than you need to just to get money! I also empathise with the muscle soreness thing - as you say - just like you've been beaten up! This thing is just more than dizziness. I saw my VRT physio today and she said that to pursue with VRt exercises, normal day to day living and fitting in a half hour of listening to a relaxation tape or relaxing music and completely relax. She advocates this strongly. She said that when we are fighting or rather our brain is fighting to compensate and keep balance - it exhausts our bodies and therefore, is a must to help it unwind in order to cope. Difficult for those with family responsibilities. B you will start to feel better. as you probably have read, it all takes a blooming long time. 13 weeks is I'm afraid to say a relatively short time. It may sound scary to hear of those of us that have had this nearing 2 years now, but we have been living too - just a bit more effort required and to have the patience of a saint!! Your phases and symptoms do get better. Keep in touch on here - it has helped us all.

Kam - your leg weakness sounds so unpleasant. Can you do any leg or muscle strengthening exercises or is that difficult for you? I think I would like to have a second opinion if I were you and fight to get one. This is a nightmare with all sorts of other issues rearing their ugly heads. I told my doctor that all these other things I have only appeared after labs came on the scene. See another doctor and try to keep positive and that you will get better.

Claire - know where you are with what is best to do or not. Drives you nuts trying to think what works or doesn't. Seems we are damned if we do and damned if we don't. I'm back doing my VRT religiously. As i said before, it certainly helps, but not sure about getting rid of it - that I think is a time thing. As Binx said - up those ladders for us all!!!! Have you got any new exercises? Would be interested to know. As regards the weight thing - absolutely with you on that too!! My 2 stone I lost has gone right back on! Joined Weightwatchers last Monday!! Deprivation of all the things I like to eat (wish I could say drink!!) and labs - oh the joy of this life!! Hugs to you Claire.

Binx - you clever strong guy! You really are a positive inspiration. Well done you on getting your own VRT on the go. Am sure that is why you have started to see a difference. Onwards and upwards on those ladders eh?!!

My head and muscles are not good today - maybe because I was feeling a bit better yesterday and started dancing around the room to my fave music on the radio whilst I was ironing!! Obviously it doesn't like me having any fun!

Take care all. Love, Gloria xx


Hi everyone

Gloria, SNAP We have had computer problems in the last week. My daughter is doing A Level Photography and was researching a "risque" photographer when was hit with a virus. We have AVG protection to stop this but like anything not 100%. Took to the local computer shop to be fixed and have another protection with it. Did your hubby fix yours? Thanks for all the VRT tips i have always followed yours even last summer when i was just reading the posts very helpful thankyou. Like you am carrying out them religiously as determined to kick this labs away! The dizzies have been to a level i can cope with in the last week but like you and others have been getting muscle aches, neck stiffness and like a tight feeling in my head, also wobbly legs at times. So hard to imagine all these symptoms related to an inner ear disorder. Thanks for your advice about ear syringing, have got an apt in couple of weeks

Claire, not attempted cinema yet as still so sensitive to noise, once my ear settles down will deff try to go. Did manage 5 hours shopping and just walking around Canterbury the other day! Obviously a few coffee breaks in between (should i say decaff green tea breaks these days as coffee forbidden). Felt fine afterwards, although new handbag had something to do with that! Even washed car and felt okish after that, yet today not done so much as feel like steam roller paid me a visit in the night. Hope your girls doing ok at least half term coming up.

Ashley, know what you mean about the wind affecting the dizzies, bet you have had it quite bad up there, still you northerners are tougher than us southerners!!! Have you decided if you are going back to work yet. Think hard as you dont want to knock yourself backwards.

Jemma, i felt at the end of the book it was awful as she left it that you didnt know if she had recovered or not, bit of a let down as it is the one thing we are all wanting the answer to, will our labs ever go!! You must miss your job, after all the training you must have done must be so frustrating to have it all put on hold.

Binx, well your posts are something else. Very entertaining. I find when i am doing VRT and standing on one leg thing, my affected side (which is the right ear) my right leg is more steady than my left, and yet i feel it should be the other way round, none of this labs thing makes any sense. Have you done more driving yet, i feel ok, apart from when you stop, it feels like i need a couple of minutes to come to before falling, no getting out of the car!!

To everyone else positive thinking and all that!! Am going out to lunch next week with a group of 12 girls from where i used to work, am so looking forward to seeing them but feel apprehensive at the same time as feel so detached from the work place, you know office politics etc.

Lots of love

Wendy xx


Hi all:

KAM. Welcome. As an FYI..."Severe Muscle Weakness" is a very common symptom of Lyme Disease (yes, I'm a broken record.) I know many who have had it and who have recovered with proper treatment.

For those of you in the UK, here is an article about an Essex woman who is claiming the NHS failed to diagnose / treat her lyme. Her symptoms are different. SHe has no labs symptoms and has more of the "typical" pain / fatigue. (I never had that.)

Interesting article

http://www.thisistotalessex.co.uk/news/Mum-left-virtually-bed-bound-NHS-fails-identify-illness/article-3196302-detail/article.html

Here is a link to John Hopkins University's article on Labyrinthitis, which they have shown can be caused by lyme:

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/labyrinthitis.html

Excerpt:

Causes (of Labs): Bacterial or other infectious organisms, for example the organism that causes lyme disease

Hi B & Kam, sorry you had to find this site but glad you did its been my survival guide over the last year!!!

B my ENT (private) told me the same as yours it will go soon, do VRT & goodbye! luckily I got my VRT on NHS & they have been really good its almost like a counselling session for me as they are the only people who understand & explain this thing. She told me yesterday that the way this thing goes is that you will have blips where you have bad days/weeks then it will subside & so on it seems that the blips will get fewer & further between until it eventually goes! Wish we had a crystal ball to know exactly when that will actually happen. I am now going to do my VRT religously evetry day to try & blitz it I also go to the gym & walk whenever I can its also important, as Gloria said to rest & relax in the day too. Funny how Glorias therapist said exactly the same as mine, so at least we know they know what they are talking about (unlike Docs/ENT's) When I think back to this time last year & the first 4 months with this I am better its just very slow going. Just remember the things that make you dizzy are the things you actually need to do to help the brain compensate for the damage caused to the balance system so in a way dizzy is good!! I have 2 daughters 13 & 11 they have been so good throughout all this but they would love their 'old mum' back :)

Kam you have had this for so long sounds awful for you & you are so young too. It seems that nasty viruses are the cause of this whole condition & sounds like you had one which maybe affected your muscles too. I suppose like you say you just have to stay active as much as possible & hope that you improve before the 3 year mark.

Gloria we are on all the same levels at the moment I am doing WW online so counting my pro points daily :) Not eating my extra allowance all week but taking hubby out for a Bday carvery on Sunday so going to blow some then. VRT is the way for me I'm going to be really good & do it every day for the next 6 weeks. All the ones she has given me are related to head turning (my biggest dizzy provoker) with my eyes closed & standing on foam/cushion I'd be happy to send you a copy & my neck relaxation ones too, my therapist also said the same as yours & that we must take time out in the day to relax so I've started treating myself to watchig the re runs of ER on the new sky channel, well thats relaxing isnt it?? Good luck with WW & VRT :)

Claire x


Hello all you wonderful people!!

Thank you for your wonderful feedback and support. Support is something I have lacked, with the exception of my fabulous daughter. My family just want me to ignore the symptoms and get back to work. I wish I could. I don't have spinning as I said earlier, but more of a foggy brain and the feeling of being pushed down. It is every morning/afternoon and the sedative helps me get past that. I have swirly unsteady feelings often after that, but work hard to make that pill the only one I take in a day. The anxiety is so very hard and as soon as the symptoms set in the anxiety follows. I have been anxious for the better part of my life, but only mildly. I have to say the brain fog is one of my least favorite symptoms. It makes me downright "special". After I ask my daughter the same question 3 times in an hour she just pats my head and says "poor mommy". I can laugh about that. I have to say the symptoms are better then they were in the begining, but it all still SUCKS!!

You all are so very brave and I can't help but hope what Brad saying is true, as there is a cure for lyme! I live in Montana and my ENT has never once said VRT to me. He tells me to just call on the phone. I looked it up on the net and picked up on a couple exersizes. I don't do them as often as I did, but I do get up and move around a lot. I wish more.

Kam-I don't know what to say except that I am so very sorry you have to suffer this along with everything else. Does your Doc recommend PT? I would think that could only help. You are so very young and I hope it resolves very soon for you.

Binx-You are refreshingly upbeat. I don't know how you do it. I have never had a hard time driving, weird I know, it has rather been relieving for me. I did have trouble driving at high speeds on the interstate, but made myself focus on the road in front of me and tried not to whip my head around to much. I would say the labs in the culprit, not so much the anxiety. Although anxiety is aweful and I think plays a huge roll in this, for lack of better words, Nightmare!!

Gloria & Claire- Do you find a healthier diet helpful? I was on this great diet and hiking everyday right before this happened and have not been good since. I have a hard time putting a lot of effort into dinners and always seem to pick the easy fixens, which are always bad. Do you have any recommendations?

Thank you again so much for being here. I hope to be supportive to you all in return someday. Have a wonderful weekend.

Best Wishes All,

B


I forgot to ask, has anyone taken a diretic for the labs? My ENT said he would only treat me for one more month to see if the diretic worked. He has me scared. Anyway, I am allergic to an ingrediant in the pill and have not taken it yet. I fear new meds. Silly, I know. I was wondering if any of you had taken one and had results. I'm off to my brain scan today and am very nervous. :| B

Hi all,

Thanks Claire for the offer of a copy of your VRT etc - I'll send you my address. To be honest, I'm still out on the VRT thing even though I will do it - but if it has helped, then my goodness it doesn't get the award for the most fast-acting therapy LOL!!! Like you not eating my points allowance - I still think 29 points of food is too much for me to lose weight - but I do expect to lose a stone in a day!!!! Have a lovely day on Sunday.

Wendy - great to hear from you too. Good on you for a bit of retail therapy - I treated myself to a new bag last week as well. Had to secretly stash it away in the cupboard as my hubby will say why do I need yet ANOTHER bag!! They have no clue do they!! Talking of which - no he hasn't fixed the computer yet! Still on a friend's laptop. I have a feeling he will say we need another computer - can't afford that so keeping tactfully quiet!!! Glad you are in a fairly stable phase and are coping, but it seems if the head is a bit easier then all the muscles take their turn to be horrendous. Enjoy your lunch next week. Know what you mean about being detached from the work place and all the gossip that goes on. I miss my job and just wish i could feel that much better to be inclined to look for something again. I've worked all my life and had a reasonable career - until this. Your confidence gets knocked right back doesn't it? Keep doing well and the VRT of course!!

B - Montana from what I've seen of it (films and picture only) looks magical. We've visited relatives in British Columbia and toured around which was just heaven. Doesn't matter where you live if you have this labs thing though! You're right - this sucks big time! Like you B, I never had room-spinning vertigo, but the fuzzy, heavy headed brain fog and swirlyness accompanied by muscle aches especially in my neck and shoulders. I would certainly ask about VRT - you can gather from our recent conversations it is worth doing. Or like Binx, get some exercises off the internet. Look under Cawthorne-Cooksey. As for diet - well, I have stopped caffeine and drink only decaff tea and coffee. That was recommended to me for my migraines which is still an issue with this whole thing . That said I have found it has helped. As regards other food. Well, I like my food, healthy or otherwise. I try to pretty much eat as much fresh stuff, but do go down the ready prepared stuff too. I'm not too sure it makes a huge difference as long as you exercise regularly and are pretty healthy otherwise. The diuretic - I take a low dose for blood pressure - it hasn't done anything for my labs. I think if your dizziness has been diagnosed as menieres - then that is related to fluid build up in the middle ear and water tablets then help. Anyway B, good luck with your scan - it is scary, but it is just to cross off the nasties box. Let us know how you get on.

Have upbeat week-ends all.

Love, Gloria xx

Hi Wendy, didnt see your post on here yesterday when I posted mine! Well done on the shopping trip & getting a new bag, a girl can never have enough bags or shoes/boots!! I also have had the wobbly legs & tightness in head i describe the leg thing as 'dizzy' legs as they coincide with my dizzy head all very wierd, but thats Labs!! Im hoping my blip will subside soon had the vertigo the other week lasted about a week but I tto now just have the brain fog, hard to describe that one isnt it also get a real rush of pain to my head when I get up from a chair or out of a car like a 'head rush' feeling, horrible!! Yep half term is loomimg I have my cousin & 2 children coming for a few days but on the Friday I am off to sussex for a few days to visit my oldest friend (known since we were 5) so cant wait & whatever happens Labs will not be stopping me!!!! Long bus journey so hope I can cope with that. I am doing my VRT religously (2 days in!!) so will make sure I keep up with it to see if it helps. Anyway enjoy your lunch out & have a good gossip catch up.

B sorry you are in the depths of this horror, the anxiety goes hand in hand unfortunately & I too had a little pill help at the start but found that 6 months in I could cope alot better & managed to control the anxiety by myself I now dont take any medication at all. The reason you feel the anxiety is because the dizziness sends your body into panic mode & you get the whole 'fight or flight' effect where your body prepares to battle or run away, the adrenaline kicks in, the heart races & everthing kicks off!! Try relaxation tecniques they really can help. A healthier diet does help i find too much sugar/salt caffeine/ alcohol just aggravates everything & its important to keep well hydrated keep fluid levels normal. Exercise for me had been vital mentally & physically & even just walking every day can help the brain to compensate especially on bumpy uneven ground or with someone else so you are turning your head more whilst talking instead of focusing on one spot on the ground. These are all the advice of my VRT therapists & they are the only ones who seem to know anything about this. i really hope your scan went okay i had one in March last year & it was all fine its good peace of mind.

Gloria, will sort all that out for you, no problem have inboxed you too.

Take Care Claire xx


Was thinking about this group today and just wanted to pop on to say hello briefly. I haven't been on here in probably a year. I know how much of a help it has been to so many people that this thread exists, if only so that you don't feel so alone with the dizziness. Nobody can understand unless they've experienced it, and it's amazing how many people have been affected by some prolonged episodes in their lives. My dizziness started in October 2009, so that was more than a year ago. I thought I'd never be better and spent all my time surfing the net for answers that my doctors couldn't provide. I came to this thread a lot to vent, but eventually had to stop as it was depressing me. I just kind of let go and let God, as they say. I believe my doctors now that I have vestibular migraine. I am 95-99% back to normal all of the time and I have gotten better and better and better as the months go by. Only recently did I think, hey I'm not feeling too disoriented in the grocery store! Stores always made me feel lightheaded or sort of drunk-headed, but not so much anymore. My doctors want me to take a low dose of topamax everyday to keep migraines at bay, but so far I have restrained myself as my husband and I want to have more children and you can't take that medicine while pregnant or trying. Eventually I will when I'm ready, but I've learned to relax with my condition. I've learned that life goes on and I can still enjoy it even when I'm dizzy. I have good days and bad days with it, but mostly I'm fine. Your brain will slowly, slowly compensate and you will get much better. It might take a year or more until you're feeling more like your old self, and it will be up and down the whole way. I just wanted to send some encouragement to anyone who's scared right now that this will ruin their life. It won't! Do the VRT, See a neurologist-- not just an ENT-- for testing, try different medicines if you like, keep pushing through! You'll get there! best, Jess


Hello everyone,

Good to see a few bits of positive stuff in the mix !!

On the subject of VRT - you will see i have been doing some stuff off my own back. Got on pretty well with most of it - no major probs at all.

Added a new one into the mix tonight - the 'head roll'. Standing up - rolling the head and neck - very similar to a physio exercise for someone getting over a neck problem.

As i had been getting on so well with the other exercises - i just crashed straight into it. Did it for 10 seconds then stopped dead. On stopping i found myself in a ten vodka spin - although this subsided (sobered up) relatively quickly (10 - 15 seconds). Tried again in the other direction - same effect. Did not proceed to doing it with my eyes closed for obvious reasons.

Looks like i've found my main VRT nemesis - and i prepare to do battle over the coming days !! Once concoured - it's then straight onto the kids trampoline for more punishment.

I'm thinking of starting my own classes. Anybody up for it ? There will pain, serious suffering and discomfort - but you will never have laughed so much in your life !!!

Hope everyone has (or has had - depending on when you read this) a good weekend. I am removing all the snakes from the labs 'snakes and ladders' board in order to immediately facilitate an upturn !!

Next week will be week 9/10 for me.

Take care,

BINX1965

P.S. I was only jesting about the trampoline and VRT classes.


Well, my scan came back clear. I am happy about that, but frustrated that there is, yet again, no answer. I know you have all gone through this and I just need to accept there is no answer. I fear I will never be good again. It has been a very swirly day. I stay low on these days. Makes me grumpy!

I hope everyone else is having a great day and feeling on the up and up.

Gloria, Montana is very beautiful and I love it here!! I live in the mountains in a place called Missoula and am so in love with the city. It has terrible inversion, that create some yucky allergies, due to the mountains and you really have to get used to that. But, I am an outdoors gal and LOVE to hike, so this is the place for me. I have never been to Canada, but I hear it is just as beautiful! I've never really been too far from home.

Claire, I feel like I will never be able to not take the pill, but I may be wrong!!! I will take your advice and get out there hiking again!! I know you all know what you are talking about so I better listen!!=) What is NHS? I did look up a couple VRT exersizes and did them for a bit, but will start up again. Couldn't hurt right?

Thanks again!

Stay well all

B

Hi all,

Jess - thank you so much for taking the time to send an update. It helps so much to hear of people who are progressing and positive. Gives us all hope. Long may you feel well.

Binx - funny you should mention the trampoline!! My VRT therapist only said the other day that those who are able to get a mini trampoline find it hugely beneficial and has suggested that to me. This is because I said to her that after a quick boogey to some music my head was throbbing and tight and horrible. She said that's what I need to do more of and suggested the trampoline!! I have swing-ball, I have skipping ropes, I have an exercise ball - maybe we should join forces and open a VRT gym!!!! It is amazing how quickly the brain becomes used to things. Once you have found the exercises that are suitable for you - keep doing them but increasing the time. In other words if you can do an exercise and it doesn't have much of an effect after your normal time frame, then increase until it brings on your symptoms again. Apparently, if you can do a movement for 2 minutes, then you can consider stopping it - VRT info not mine. Good luck Binx.

B - good news about your scan. It is a relief, but then you think why hasn't anything shown up! That is why this site was my saviour. I found that so many other people had the same symptoms as me and that I wasn't crazy - but the doctors never mentioned any of it. Where you live sounds a beautiful part of the world to go hiking in - and the more you can do of that, the more it will help you. I love to walk and the UK has some beautiful places too - just on a much smaller scale! My hubby and I love the coastal walks of the South-west of England, but then Scotland and Wales are quite mountainous and beautiful too - just our weather is a bit unreliable to say the least! B, the NHS stand for the National Health Service which is our medical service in the UK. Everyone who works and pays tax, pay an amount throughout their working life, deducted from their monthly salary, to contribute to their medical costs and welfare for their lives which is why we don't pay for our medical care directly like you do in the States. Our system I have found to be excellent all things considered and we are lucky not to have to pay. Having gone privately at the beginning of this labs horror (privately is quicker than waiting for an NHS appointment) showed me just how expensive health care is if you have to pay. My blood tests, as I said recently cost me £1,000 (not sure in dollars, but a lot). As regards your anxiety thing B - look back a few posts, I told Binx about a natural herb called valerian, which I find helps me. It is calming, but has no side effects like chemical medicines do. Maybe if you can get that it could help? Anyway, move, hike, do VRt, scream, but know that we all support you. Take care and feel better soon.

Good week-ends all!!

Love and hugs, Gloria xx


Hello everyone,

Hi B, can really sympathise with the way you feel, it is so hard to cope with. I found doctors and ENT not very helpful to say the least. I have gained so much from reading other peoples posts on this site, ie, VRT tips from Gloria etc. Unless you have suffered from this illness it is very hard to explain to anyone else and can be isolating. Glad your teenage daughter is understanding with you, i have two teenagers and they have both been really good, glad they are not any younger, hard work! Good to hear your scan was clear, but also doesnt help how you are feeling now, as you are more or less dismissed from the doctors after that. Hopefully things will start to get easier for you soon, it is of some comfort we are all in the same boat.

Gloria, shame we dont all live closer, we have a cross trainer for fitness, would be great to open a gym with everyone. Am impressed with you and Claire with your new found fitness and healthy eating. I havent really got back into the fitness thing yet, keep using labs as an excuse, do enjoy walking. Sometimes i borrow my sisters little dog just to go for a nice long stroll! He loves it. the girls have a trampoline in the garden, i used to go on it before all this, not a pretty sight i can assure you, just couldnt imagine my head coping with it now. Does your therapist more or less advise you to do things that really bring the dizzies on. Know what you mean about some VRT movements not making me dizzy anymore. Anything that used to involve my head looking upwards used to send me dizzy, now i can manage this easier. At least i can see the cobwebs on the ceiling now! When i was unable to look up, cobwebbing was not done until my daughter wondered what seemed to be a washing line in her bedroom and was in fact a very large cobweb that i hadnt noticed! The shame of it!!! Good job Kim and Aggie not been round. Hoping your migraines are under control, not a nice thing to have with this. I too have a stash of handbags hidden away from hubby. After giving up work i sold about 10 of my work type handbags on e bay, and felt had some room under the bed, slowly new bags seem to have crept back under!! I am an absolute handbag addict!

Claire, the feeling of what you describe as head rush is familiar, it is a weird sensation, glad your vertigo has gone, i had that in my first month, the scariest thing ever, that is my ultimate dread for that to return. Sounds like you are going to have a good half term. So nice to catch up with old friends, the sort of friend you havent seen for a while but when you do see them there is no awkwardness and that you just feel relaxed with. Have a lovely lunch out on Sunday with hubby and dont worry about those WW points!!

To Binx, Jemma, Ashley and all lab sufferers, enjoy the rest of the weekend and hope it is symptom free for you all, if only!!

Love

Wendy XXX


Today is a good day, although I have been to tired to do much!!! I work only eig