Sharp Blue: Labyrinthitis comments, page 9

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Hi all- Sandie, yes! I have been sitting in a movie theater, feeling like I'm going to fall right out of my chair and roll down the steps. Not fun. I always choose to sit on the aisle seat, just in case I need to leave. However, I haven't yet had to leave a movie. I try to just ignore the feeling until it passes. I try to not get too scared, and not let it take over. It's definitely hard at times, though.

Anna-I've been hearing great things about the Dr. you mentioned. Thanks for the recommendation. He is on the top of my list to visit. The other place I'm considering is the House Institute in LA. I do have a friend in Chicago I can stay with to visit Dr. Hain though. Apparently he is a leader in the dizziness world, and is also very kind and takes a lot of time with his patients. What a difference that would be to experience!

Anyway, thanks to everyone for your help and suggestions. I have to fly to Austin Texas tomorrow for work, and am getting a bit nervous. Hopefully the flight won't cause me too many problems.

Best, Skye


Skye - I did not look on the site to wish you a good flight on business. Hope everything went well. Keep us informed about your visit to Dr. Hain in Chicago.

Rich Backer - THANKS again for this new page (ninths!)You have become a good friend of mine through these years - invisible, but very important supporter and helper in my struggle.I have been here from page 1.

Sandie - do YOU live under high voltage electrical line? If I understood correctly: you know at least two people who have dizziness living directly under such a line. I just remembered one documentary from yearlier years, where they showed several neighborours who had brain tumors and they lived right near pylons of such lines.

I am feeling much stronger, taking better care of my body and mind. I am eating healthy food and I walk, walk, walk and walk. I feel HAPPY with my life no matter how dizzy, shaky, fatigued, or scared I am. Now I know, that I am brave and that I can face hardships.

You ALL have helped me enormousely.

I wish you all a good weekend.

Anna


Hi all: I have been down with this virus for almost 5 months. The ups and downs are are driving me nuts.I feel like my head weighs 500 lbs and I'm always tired. Also I have the fullness in the ear that seems to be typical. I'm at the end of my tether and don't know what to do. Had a great week last week, then bang it came back. Will I ever feel normal again? Maria


Hi again, This site has been a godsend. Thank you so much Rich for all your trouble. I visit your site every day. I totally identify with those of you who feel like your head is going to burst. It happens especially when I have something else in addition to VL. like a cold. Do some of you find that even getting a cold seems to knock you out and set you back? Also I have days when I feel 95% okay, and the next day I'm back to square one. Does anyone know what causes that? I don't really feel it at all on the good days, so it is hard to see this as an illness. But on the bad days, I just want to crawl into bed. I'm seeing a chiropractor/naturopath who has really helped me, but I'm still not out of the woods.Here are some suggestions which I'm happy to pass on. Ginko is good, and peppermint tea can help with the nausea. Try and avoid oranges as they can irritate the membranes. Apply heat to the back of your neck often(heating pads), because the neck is stiff due to trying to keep the head balanced. If nothing else, it is relaxing. Also sweet potatoes are preferable to white, and steamed vegetables preferable to raw vegetables, especially in the winter. Lots of water, and if can't drink 8 glasses, try cranberry juice mixed with water. The cold weather definately affects this, and I can almost garantee a relapse if the temperature drops suddenly. I live in Canada, and we have had a horrendous winter, with a huge amount of snow and very cold temperatures. I tried being positive, but it's starting to wear thin. I find depression and anxiety, and insomnia go hand in hand with this monster. I have not been to a restaurant in 6 months (afraid I will fall off my chair, and how can you leave in the middle of a meal? I drive locally, and walk to the shops. I can now walk my dog for about 15-20 minutes a day. In the beginning, I could only get as far as the end of the driveway. So while I'm getting better slowly, I find the relapses hard to take. Although I wouldn't wish this on my worst enemy, I feel a lot less alone in dealing with this, thanks to this site. I am on Serc, but don't find it very helpful. My chiropractor at least listens, my doctor shrugged it off and told me not to worry so much. Thank you all for sharing your experiences, and Rich thank you again. Maria


Hi Anna

Yes I have lived under pylons, not directly under but close, for 20+ years and I know three people personally suffering the same as me who have lived under these pylons.

Of course, everything is covered up by the government or whoever about these things but I know it happens.

Glad to see you are still doing well and long may it continue!

I am due at the ent tonight though I don't really hold out much hope of any miracle cure. I know I am probably doing the best that I can for my condition - plenty of good food, plenty of walking and keeping active and trying to get on with my life.

Maria, you are so right, the relapses are so hard to take, just when you think you are getting over it, it all starts again! Keep fighting!

Sandie


Hi All, Sandie, just wanted to check in and see how your ENT appt went last night. Hopefully better than they usually go with doctors. I had to go back for more balance testing yesterday, mainly to check for Meniere's. The woman performing the tests said that she didn't see anything that concerned her, but we'll see how my ENT interprets the results when he gets them. Those tests are NO fun.

Maria, I too find that Naturopaths and Chiros are much more willing to listen than ENT's. Glad you have found someone who is kind and understanding.

I had 5 days last week without an ounce of feeling off balance! Quite astounding for me! Today the feeling is back just a bit, but I think it's b/c I had a small amount of caffeine this morning. Caffeine seems to be my enemy.

I'm currently still taking Ginkgo, a mineral supplement, a strong anti-oxidant, and grapeseed extract. I read somewhere that grapeseed extract is really helpful in extracting fluid/pressure from your ear. Not sure if this is accurate, but when I was feeling off balance last week, I increased my grapeseed extract dosage, and the off balance feeling got so much better! Maybe a coincidence, but I'm going to keep taking it and hope that it continues to work. And hopefully it will also work for others.

My current ENT is debating between Meneire's and MAV for me. If those balance tests come out clear, he wants to start treating me with migraine preventative meds. He said that constant off balance feelings relate more closely to MAV than Meniere's. Who knows for sure. I still feel like it was Labs.

Oh, the journey is long, but we will all reach the end!!

-Skye


Hi, everybody

Everybody - I want to make more clear Skye's remark that he is taking GrapeFRUIT Seed extract (not grapeseed extract). It is really a good thing to take in on a regular basis. I also have heard many positive reviews from other people. Waht I do - I eat whole grapefuits WITH seeds. They taste somewhat funny - but I know they are good for my health. One more good stuff for balance: GINGER ROOT. It is well known, that Chinese sailors always chew whole ginger roots to prevent sea sickness, and it works wonders: they are never seasick even during very stormy days. I convinced my mother who cooks in my household to add some grated ginger root into some dishes. Again it taste different, but we are getting used to it's spicy, new and fresh taste.

Sandie - I am going to make more research about this thing: living under or close to source of electromagnetic waves, that are causing your (and other's!) ongoing problem. To tell you the truth -it makes me awfully angry. It is your personal great courage to live with THIS, but why should you suffer?!!!

Maria - do not lose hope. Look: you can go shopping by yourself - big achievement.

Personally: I am doing better. I am volunteering at my old job. Feeling stronger and have much more self-esteem,than three months ago, when I just started to go to work. I can sit for two-three hours at lab meetings and discuss current and new scientific and applied projects. I make notes of everything, that is going on in the lab in my logbook. I look down, trying to concentrate and to prevent my eyes from jerking. I am very tired, headachy, but, guys, I am HAPPY, that I am coming back to life after more, than four years of slipping into abyss.

Do not give up. Write a post if you need to vent -it helps.

Oh, I am tired of this laptop...

Anna (veteran of dizziness, imbalance and headaches)


Sandie - more for your information.

http://news.scotsman.com/cancerresearch/Did-living-by-this-pylon.3280218.jp

It looks like there is very little research have been done in the area of effects of electromagnetic radiation on people's health. Next to nothing is known as trustworthy facts. No government, or organization, or special fund is going to support such research in the nearest future, alas...

Anna


Hello Skye and everyone, Skye you sound like one tough cookie. I am impressed with your definanition of severe verse moderate. I just wanted to mention to keep in mind that Migranes may be a symptom and not a cause I found that it fortuntantly was in my case. I also discovered dairy does not work well in my system and since I have stopped eating ice cream and cheese. I have felt much better. I think I discovered where the "Pressure feeling " at least in my case is coming from. After a visit to the chiropractor, he verified that my 2nd vertabrae was out of place. After he adjusted that. I could feel the neck muscle (I am sure anna or meagan would know the name) move as it did the "Pressure feeling dissipated immediatly. Even though it was minor in movement it felt a lot worse that it actually was I am sure. I am still going to the chiropractor for "minor adjustments" and occasionally to my Acupuntionerist about every 3 months now. My migraines are almost completely gone. Also getting off of Birth control was another health altering event. I also still take the Vitamin B 6 with Niacin. I can also feel a huge improvement just by eating high doses of vegtables. In fact I am starting to even grave them in the afternoon. (UG) Anna I hope you continue to do well Hope this helps, and Everyone stays well Thanks Rhonda


Hi all: I really appreciate all your comments on this site. We're all in this together. Anna,I admire your persistence. It seems to be really paying off. You must feel good about being semi-normal again. Keep it up. Sadie, what is MAV? I have never heard of it before. I have heard of Meniures. Skye, you are keeping very positive. Congratulations. I find with this, you have to be grateful for every good day. Last week I went to Wal-Mart for the first time in 5 months. Felt a bit funny, but not too bad. I couldn't have done that 3 months ago, or even a month ago. Any of you on Serc? do you find it helpful? I find it marginal. But I don't want to stop for fear that I'll go back to square one.

I have had a week without a setback, Yeah! The longest period yet. I don't think it's over, this thing won't give up without a fight. Take care everybody, remember, one day at a time. Maria


Hi,

Think one of my posts has gone missing here. I went to the ENT on Tuesday and they offered me an MRI which I refused as I just could not bear to be in that tube. Anyway I am going to have a CAT scan instead.

I was a little shocked that I was being offered a scan at this late stage so consequently forgot to ask all the questions I had in my mind before I went. I could have kicked myself when I came out!!

Anyway, he did say that he didn't think there was anything there and that he wanted to put grommets in my ears and then inject my inner ear with steroids. This also was a bit of a shock and I did not ask him why. Does anyone know anything about this procedure?

Anna, thanks for the info about pylons. I will look at that at a later date. I know why nobody will sponsor it - because there will be so many cases of compensation that will follow! They don't want everyone to start putting in claims.

Maria, serc did nothing for me and a friend I have also has not had any success with it.

Sandie


Hello there, I just wanted to post because I have really appreciated reading the many posts on this site. I have had labyrinthitis for three months now. I got it after the holidays when a virus from the stomach flu settled in my inner ear.

After many many blood tests and every other possible check the doctors could think of, I was referred to an otolaryngologist (an ear/brain specialist). He put me on a mild diuretic which has a helped me tremendously. The diuretic adjusts the liquid levels in the inner ears and helps to relieve the pressure in the ears that contributes to lab. It made me feel a little worse for a few days as my ears were being adjusted and now I'm feeling much much better - dizzy and lightheaded spells are gone almost completely.

I just wanted to share this for those who might be looking for some new treatment ideas. I don't feel back to my normal self yet but am back doing pretty much all my normal things despite that - and before was pretty much homebound due to this.

Good luck to you all.


Hi all, Im new to this site just reading it today.ive read many posts and found my symptoms i have are common!last year in july i had a real bad ear infection 4 courses of antibiotics,then dr said my earbrum seemed burst....since then i been suffering dizzy spells but not dizzy to which i find hard to explain..i saw an ENT he said nothing i had no xrays done just a ct scan..but this now has lead me to anxiety and also depression,my ear feels full,my throat hurt and also had my tonsils removed in 2005..and i still cant swollow!..my balance is really all screws up..but the feeling is mostly derealization..panic attacks headaches neckaches etc...i have alot of the sympotoms most people have written..ive seen a shrink he diagonsed me as a hypocondriac...but mostly the feeling i have is not feeling the world or my bosy or movements as real ...can anyone help me or give me some advice please thanks. rob


Hi Just wondering if anyone has had ear tubes placed? If so, did you find it helped with the ear fullness and ringing? Thanks


HI all: That is great news Amanda, that your VL has almost gone away completely. I was told that the Serc which I have been taking for over 3 months was supposed to level the fluid in the ears too. I didn't have much success with it, although I am feeling much better. Have been symptom-free for almost 2 weeks. My problem also started with a stomach virus, but that part cleared up in about a month. The ear problem has remained for another 4 months and counting. At least there is light at the end of the tunnel I was pretty well homebound too but now I am living a semi-normal life again. Anybody try Zinc, I find it helps a bit too, at least with the energy levels. Take care everybody Maria


I just found this site while looking for answers for my wife. About a year ago she got up early in the morning to go to the bathroom. She says she "passed out". She came to and called to me and I had to help her up and to the bed. I took her to the emergency room and she stayed in the hospital for several days. Since this time, she has had miagraine headaches and periodic dizzy spells. She also seems to have periods of slight memory loss. She is 50 years old. She has had multiple MRIs, brain scans, xrays, sonagrams and every other test you can concieve of. They found nothing. I am suspecting either benign positional vertigo or Labyrinthitis. She has seen several doctors and two neurologists. She has been unable to work since that time. In bed, she can roll over on her left side and immediately feels like she is falling through the bed. This effect lasts for just a minute after she rolls back over. Initially, her miagraines just involved the "Aura", but now they are becoming more painful. When she has the headaches, she can't even spell simple words or think of common things.

What does this sound like to you guys? I am in the Dallas Texas area. Does anyone know of a reliable person to see about this? I am afraid the doctors we have seen are clueless.

Curt


Curt-

I can't recommend any doctors in TX, but here's a link with a lot of good information. Whatever your wife's diagnosis is, it sounds like migraines may be a part of it.

http://www.mvertigo.org/


Hi, everybody

Lately, I have been very busy trying to get back to my old job in a scientific lab. that's what I love to do for the rest of my life. I will die but I MUST be back! I have been volunteering there from January 22 this year, so it has been two and a half months. I am on permanent disability with "daily dizziness and daily headaches" since June 2004.

I have been reading each of your posts, folks. Sorry if I could not answer all of them or give your some response. But I am here, always with you. You give me so much INSPIRATION with your everyday struggle and your everyday achievements.

Maria - Serc did nothing to me - no good, no bad. But I heard, that some people benefited from it taking it for a year or two. If you are certainly allergic to something - Serc might help. DM - ear tubes were supposed to help American children with ear infections back 10-20 years ago, but later wide epidemiological studies showed, that EAR TUBES were NOT helpful. They brought more harm, than benefit. I have read a good report on that a couple of years ago. Rhonda – your chiropractor were of great help for you. Probably, you had something in your neck, that somehow obstructed normal blood (thus oxygen!) supply to your inner ear tissues. These tissues suffered with mild oxygen deprivation and here we are: your were dizzy. Blood cannot flow to our heads other way, than through our necks. If muscles in your neck are pressed for some reason by vertebrae – some blood vessels could also by partially obstructed. But it’s only my speculations, maybe the explanation of Rhonda’s problem is different.

Sandie – how is it going with corticosteroid delivery procedure to your inner ears. I have read, that this treatment is available here and there. To my opinion – it should not hurt you, and who knows, it might help. Corticosteroids are very powerful being delivered directly in contact with effected tissues. With that procedure, that your ENT doctor prescribed – the drug should be periodically (or constantly?) delivered through tiny tubes inserted in your ear drums right to oval and round windows on the outside of the inner ear. Am I right, Sandie?

Somebody asked what MAV is. Migraine Associated Vertigo – it is known very little about the cause (or causes).

I wish you all a GOOD day, no matter to what degree of the illness each of us is affected. Let’s hope for even better days.

Anna (veteran of dizziness, headaches)


Hi all- Rhonda, I always love when your posts pop up!

My balance tests all came back negative for Meniere's, so my ENT thinks that it is MAV-Migraine Associated Vertigo. I'm not sure if this is a result of an initial viral labs infection, or if it was MAV all along, but the diagnosis does seem to fit with my current symptoms. (Dizziness, off balance, visual disturbances like blurred vision or seeing wavy lines when looking at a light or white background, and mild tinnitus)

The trouble is, I haven't found a neurologist in Utah who knows about or understand MAV. Therefore, I'm going to take a trip in June to see Dr. Timothy Hain in Chicago. He treats MAV daily, and is very knowledgeable on vestibular problems. Curt, if you are looking for an excellent doctor, and can travel, I'd recommend Dr. Hain in Chicago. Check out his website. http://www.dizziness-and-balance.com/contact.htm Some of your wifes' symptoms sound very much life MAV.

Man, it's been quite the journey these past 8 months. I'm still searching for an answer, but refuse to give up. I hope that everyone on here stays positive, tries to fill their life with healthy things, and keeps moving forward toward an answer.

Take care all. Hope you all feel well today!

Skye


Hi all: Your comments are all an inspiration. Rob, I really understand what you are going through. You are not a hypochondriac. You have a medical condition called VL, and your balance is all shot. I read somewhere that the anxiety is part of the condition not the result of it.It's awful that you are not getting good help. Have you tried a naturopath? My doctor simply disregarded the whole thing, but my chiporator helped a lot. It's worth finding someone who will listen, and who doesn't think you are inventing the whole thing. I'm still having some dizziness, but feel much better. Now my 27 year-old son has come down with it, although his doesn't seem as severe. Talk about rotten luck. He was one the ones who thought I was exaggerating. All the good stuff we pass down to our children! Skye, I was glad to hear your Menieures test came back negative. Is there medication for migraines that you can take? You have done great staying positive for such a long time. Good luck everybody, spring is here! Maria


Hi all. Just a quick note to tell you that I am still feeling much, much better. I was hit with a very bad case over 3 years ago. Recovery is very, very slow so keep the faith. I am about 95% some days (even 100% some days). Then maybe down to around 75% here and there but so much better overall. Most of the anxiety has gone away as well as most of the ear issues and dizziness. Guess what? I actually went on a Carousel yesterday with my 2 year old daughter! A carousel of all things - my wife couldn't believe it. I just wanted to share that with those who are still in the throes of this illness. Recovery is gradual, very, very gradual but you will get there. Keep the faith and courage.


Hi everyone,

Hope you are all doing ok. I have just had a really bad head cold, with joint pains, lack of energy and conjunctivitis in both eyes resulting in a week off work. But, guess what, no dizzies as yet just the usual milder stuff. Thank god, I was so worried that this would cause another relapse as it so often can!

Anna - you are right about the procedure for injecting steroids into the ears, but I have decided against this treatment. I have been posting on the inner ear disorder message board and one guy on there has had this done and he is no better for it. He got relief for a couple of months at a time and then would have worse dizziness than before and have to have more injections. He doesn't bother with it now.I pretty much live a normal life now, with just mild dizziness and feeling off balance now and again, so I do not think this necessitates maybe making myself worse.

I have also decided against the CAT scan, as these too are high risk. It is thought that 1 in 2,000 people will get cancer as a result of having a CAT scan and I don't want to be that person. While I do worry deep down that there is something in my head that shouldn't be there causing all these symptoms I also believe that I have had them so long (3 years), that there really can't be anything seriously wrong. I hope I am right.

Take care

Sandie x


Hey all- Hope everyone here is feeling well today.

I have been feeling better as of late, until this morning. I woke up with my ear full of pressure again. I haven't had this symptom since last August, when this all started. I was just wondering if anyone here has had reoccurring bouts of ear pressure. Is it normal to come and go? Anyone else experience this?

Thanks for any replies.

Take care all!

Best, Skye


hey all, it's been awhile since i posted. i want to HIGHLY recommend a book called "migraine" by oliver sacks. he is a british neurologist. this book blew me away as i saw many of my symptoms in it. and even if you don't get headaches you can still have migraine disease. migraine has so many symptoms that vary from person to person as well as daily from person to person. i finally figured out that the fullness up under my jaw that i get (and hate) is a carotid migraine. when it spasms the area becomes congested with blood. severe migraines can cause injury which is why i have so much left ear vestibular damage. they can also mimic strokes. i am not saying you all have migraine. i never had a history of it and neither does my family that i am aware. just get the book and read it. it is a little bit of a difficult read but the author is amazing and i wish i could go to him with this. it may ease some of your fears as well. remember migraines don't show up at all on tests. one might be seen by shooting dye up the vessels and observing one in progress but other than that, there is no real test. i also went to a migraine seminar recently. i believe the neurologist read the book too. anyway i figured this out on my own. sometimes i start to get a dizzy, vertiginous feeling which is accompanied by hot flashes, body tingling, and nausea. and immediately following this, here comes that full feeling in my carotid area. yes it fades after a couple days but some fullness remains (very little) due to the fact that i know the migraine has damaged my blood vessel. also all this started with bppv in both ears which was confirmed. there has been some evidence of bppv and migraine association. maybe all this was caused by a bad virus. i don't know. please read the book. also magnesium 200mg is recommended for people with migraine. it does seem to help. anyway sorry to be such a stranger. hope this helps. and forgive me if i've already posted something similar. megan


Skye-

You mentioned MAV in previous posts. You may want to pick up the book "Heal your Headache" by David Bucholz. Very imformative,believe it or not, ear pressure can be caused by migraine.


Hi people.

I was diagnosed with labyrinthitis last april. I started feeling a bit dizzy and I was finding it hard to focus on things, so I thought maybe it was my eyes, and the straining was giving me the headaches. After a few days of that I decided I should probably get an eye-test but before I had the chance, things got much worse.

It got to the point where I felt so dizzy that I was throwing up every 20 minutes. I was getting barely any sleep because lying down made it worse so I had to sleep sitting up in an armchair. Eventually I went to hospital because of course my constant vomiting dehydrated and starved me which made things even worse. They put me on a drip and diagnosed me with labyrinthitis. Gave me some anti-vertigo pills, signed me off work and told me I'd have to ride it out.

Since then I have had mild recurrences, but nothing like the first time. I'm in the middle of one right now which is how I came across this place. But what Maria has said has really interested me. My two main recurrences have come immediately after suffering from a cold. I had a cold last week, then just as it was fading I started getting dizzy, and I've been getting bouts of nausea. Luckily I haven't actually vomited yet, so I'm hoping it's going to phase out again soon.

It is a horrible thing. When it lasts for a few weeks, it doesn't stop me living my life but I constantly feel under the weather and not on top of my health which is just depressing.


Howdy from OK, There are very stormy days in Oklahoma this time of the year. I am NOT dizzy,some imbalance when turning quickly around, or bending down. I am only very-very headachy and sleepy. But nothing even close to the HORROR that I had just two years ago. Lawn mowers and other loud motors still bother me a lot (I hate them absolutely, why people are so much obsessed with their stupid lawns????!!! they'd be rather thinking of each others' HEADS!!!). I am planning to go with my husband to visit our children in Boston area. I have to tolerate air flights and all noises and four take-offs and four landings, all that sickening things for me. As a rewarding gift for my sufferings I will have great fun to kiss and hold our grandson, who is turning ten months soon. He makes me happy! It is so good to BE ABLE to make plans for future !!! I am so sick to be housebound for long-long months, even years....

Beatle Mark - Carousel (Mary-go-round)- it is unbeleivable that you can think of doing this! I could not do that even being a child. My mom remembers, that once she put me on carousel, and I got from it falling and shaking, green pale. I do not remember that, but I still always have this sence of stomach coming up to my throat if I only look at those rotating funny things.

Everybody - keep going, we shall overcome.

Anna - (I am on the fifth's year of my fourth major bout of DIZZINESS/VERTIGO etc.)


Hi everybody, Hope you are all feeling better now that spring is here. Weather seems to help. Skye: when I have setbacks, I get exactly what you mentioned. The ear is full of pressure. I usually wake up with it and it stays all day. My doctor said it has to do with fluid levels in the ears. It only happens in one ear. Do you have a cold? I think that is what causes it. Do you find it makes you dizzy? I have an ENT appointment in two weeks after waiting 6 months. i will try and get more answers. Shrugs from my doctor aren't enough. It is sure hard to get rid of this thing. Regards, Maria


Hi eveyone, I had posted a few weeks back. I'm doing better but have really started to feel terrible again. I am going to see a biovalent specialist on Monday. She said that she has had some success with cases like mine, so I have my fingers crossed. I'm wondering if the changes in the weather have aggravated my case. It's certainly been tough to get through. The headaches have been everyday!

Best to you all. I will report back if I have any success with the biovalent specialist. amanda


Hi all, Hope that you are all having more ups than downs.Anna you are very brave to be doing all that traveling.All those airports! And you are absolutely right about loud noises.Also bright lights I find. Never bothered me before.Does anyone know or has anyone been told VL is somehow connected to allergies. Just wondering.Sometimes I have pain in my nose. It sure is sloooooow. All the best everybody. Maria


Hi all- Hope everyone is feeling well today.

I've been reading Heal Your Headaches, by David Bucholz. It's a fascinating read! If you have a chance, I'd encourage everyone to read it. I too have never had true migraine pain, but I now believe that I've been experiencing silent, vestibular migraines. I feel pressure behind my eyes, sometimes pressure in my ear, I see tiny wavy lines, get tinnitus, and feel off balance. I've made an appt with a neurologist, but it isn't until the end of June. Unfortunately there is no specialist in Utah who really understands MAV-Migraine Associated Vertigo-so I'm hoping to travel out of state soon to see someone who does understand it.

Maria-Yes! I do find that when my ears feel full, I'm usually dealing with some type of sinus pressure or cold. Luckily my last bout of ear pressure subsided within a couple of days and didn't lead to a vertigo attack. It definitely made me feel more off balance than usual though.

All things considered, I'm managing pretty well. I never miss work, and try to stay as active and social as I can. There are times that I don't feel great and have to leave events early, but the fact that I can at least get to them in the first place is positive for me.

Hope everyone out there is staying strong, staying positive, and know that this thing will get better!!

Skye


Hi Maria

Regarding your question about allergies, I have had VN for three years now and did not have any allergies before, but last year I suffered from hayfever and had a relapse which might have been because of this. I now wake up every morning and my eyes sting and water like mad. I take an anti histamine every morning which helps. Also, since I got VN my asthma has been worse. I don't know if all these things are age related (I'm 47) or as a result of getting VN, as asthma, allergies, ear, nose and throat are all related.

Take care

Sandie


Hi Sandie, You make a good point about ears,nose,throat all being related.Like you I have never had allergies before,but at 60,anything is possible. My doctor told me I have some inflammation in my nasal passages.A lot of people mentioned migraines on this site,and since they are due to some inflammation,I wonder if that could be part of the problem.I feel a lot better,and I don't really get headaches,but I feel constantly stuffed up,and often my eyes and nose hurt. What type of antihistamine are you using? This VL seems to be on the rise.I hear of more and more people who have it or have had it.Maybe that will make doctors sit up and pay attention. Have you seen an ENT Sandie? Regards, Maria


How bad is this for people who are already prone to anxiety and depression? I was already a severe sufferer of both, and FINALLY had it under amazing control, then, got Labyrinthitis. My world has crumbled once again, and I don't know what to do. The medication/supplement combination I was on before was so mild, and so effective, but ever since Labs became serious this miracle combination has lost all of its fizz. Should I be worried that my body has become too used to the pills? I absolutely hate increasing my dose (because of side effects), and knowing that I had it so perfect before, disheartens me. I take a very small dose of Lexapro (10 mg), and before all of this started its really all I needed. Basically I just want some input on whether or not I actually NEED more, or it's just the Labyrinthitis doing so much of the anxious/depressive damage.


Hi Maria

Yeah, it took me 46 years to suffer from allergies and it's a bummer, isn't it. I don't suffer terribly like some people do, more on a milder basis. I take one benadryl antihistamine tablet per day, in the morning, (you can take up to three. This is actrivan and is non drowsy as the first pills I was prescribed had me falling asleep by the afternoon!

Migraines can cause all this dizziness and other problems and is called MAV (migraine associated vertigo). It is worth looking into this as you don't have to have headache pain to be suffering from migraine. Lots of people have had success in getting rid of their symptoms by taking migraine pills. Have a look on the inner ear disorders board - there is loads of information on there. (at the top of this page - right hand side)

You are right in saying that there are more and more people suffering from this illness. I have three friends who suffer from the same thing. Three of us live on the same estate and another is a friend I have known for years and years. I know the ENT in my area has a 24 hour clinic for people suffering symptoms, so that proves that there are lots of people suffering. Actually I forgot - I know someone else who suffers, my friend's husband suffered for years but is much better now.

Yes I have been through the usual ENT procedures and no miracle cure, nothing I couldn't research myself on the internet anyway!

The main thing with this illness is not to be too afraid of it. Do your gaze stability exercises, and VRT and I swear by getting in as much walking as you can. This is so good for you as you are using all your senses and helping your brain to compensate.

Jose, I feel so sorry for you as you already suffer from anxiety and depression and I would say that, yes, the labs definately does lead to anxiety and possibly eventually depression. Please try not to increase your dosage as anxiety with Labs does go away given time. Labs and VN do get better but you have to be patient. Fight it with all your strength, don't give in. I had anxiety for a few months in the earlier days (3 years ago) and it is not nice to suffer, but you can get over this, you have done it before, you can do it again. I might add that I did not take any pills for this anxiety though I was offered them by my GP.

Take care

Sandie


Hi

Forgot to mention that we purchased the nintendo wii fit yesterday and it uses a balance board to do the exercises on. It has a balance section and actually measures how well you cope. It really is good fun and I think is excellent for people like me who have balance problems.

Sandie


Hi there,

Just wondering, do any of you sufferers of labyrinthitis ever get ear aches / pains?

Michael J


Hi there again, I have another question.... Has anyone here not done an MRI (or any other brain scan) but still been diagnosed with Labyrinthitis? (in other words, have any of you had a doctor that didn't feel it was necessary to do a scan of your head to rule out say, a tumor or whatever?)


Hi everybody: Sandie: thanks for all your helpful comments.The reason I asked about Migraines,is because both my mother and grandmother suffered from them,and I never have.My doctor says that I have some inflammation in the nasal passages,so there could be some allergies that I don't know about.My ENT appointment is next week.We'll see if he can shed some light on the situation.Will keep you posted. My experience so far has been that I get way more help from this site,than I have from my doctor,who seems to think that I am making too much out of this. Jose: depression and anxiety are a part of this. They are not your reaction to it. Also,apparently panic attacks are common.It all has to do with the balance problem. It will get better, it just takes forever.Try and get plenty of rest, you will see that little by little,things will improve. Michael:I definitely get earaches with this.Although they are not severe.They tend to come and go, always in the same ear. Also a feeling of pressure in the ear, and of fluid sloshing around.On good days,I don't get that at all. My doctor didn't feel it was necessary to do an MRI since he thought it was basically a cold.When I asked if it was a brain tumor, he just laughed. I bought a small trampoline to exercise on last week, and believe it or not, jumping around on it isn't making me feel dizzy. Things are looking up. Take care everybody, remember you are not alone.

Maria


Thank you so much Maria for answering that. I've had the sloshing (especially if I pick into my ear, like if I was trying to pick out wax [yeah, I know gross - but how else am I going to explain it? - lol])

Tonight I've experienced a very high temperature and slight vertigo has come back, I THOUGHT IT WAS OVER !!! NO !!! It's not damn it !!

Anyway, thanks again.

Michael


Hi Michael

I have not had any MRI or CT scans and have had this thing going on for 3 years now.

Although there are many symptoms of Labs/VN they do all follow a similar pattern and I think that is why we are not all referred for MRI. Mine was kind of a text book case and they have never thought anything else was wrong with me. I have however been referred for an MRI at my last visit to ENT last month, not because he thought there was anything to look for just for my own peace of mind. I cancelled my appointment however because I am very confident that it is all an ear thing with me!

I have had ear pain over the last three years but only for fleeting seconds at a time. My ears do feel full quite often and I somethimes experience a fluttering feeling, like I had a butterfly in there.

Sandie


Hi again,

I just wanted some further closure on some things. First of all, I came down with Labyrinthitis on January 26th of this year. I suffered from vertigo (as if my own body was moving), disorientation, feeling like the world was surreal, and depression and anxiety along the way. The vertigo has been completely gone for about 7 weeks. However, I still don't have my normal "directionality", and my vision also just doesn't seem right. I really just don't feel on top of things like I used to. My main concern is the major anxiety and depression that I need to figure out. At about this EXACT time last year, a horrible depression came over me that I could not get rid of until I started taking Lexapro. Now, there's a lot more that triggered it last summer, but here's the problem: I'm on Lexapro right now, and it's stopped working. The other night it was like I couldn't even look my own family in the eye, laugh, or smile. Now, I've seemed to have quite a problem with looking people in the eye ever since all this Labyrinthitis started. Has anybody else had a problem with this? It's like people aren't even real, let alone the world. But back to my main concern.. I've once again been burrowed into a deep, dark depression, this time ON PILLS, and need some true support on how much of this could actually be from the Labyrinthitis. I was on the PERFECT dose before all this started, which was a very minimal amount, and was feeling on top of the world. However, I've been on and off Lexapro for 3 years now, so, I'm truly wondering, could it finally be wearing off at this low dose?? Or is Labyrinthitis really THAT capable of absolutely demolishing my happiness?


My daughter has just been diagnosed with Labyrinthitis and I found this site while looking for information. It is very enlightening. I will have her review it because there is a lot of information that may help her cope with this illness. Thanks to all who use it.


Hi all- Just thought I'd comment on what Maria and Sandie mentioned regarding allergies. I too have an inflamed sinus, on my bad ear side. Pretty interesting. Seems like everything on the left side of my head is inflamed. That's where I feel the most sinus pressure, where I have the vision issues, ear issues, etc. I definitely feel like this is either migraine or allergy related.

Also, I did have an MRI early on. When my off balance feeling didn't go away within a few weeks, my ENT sent me for an MRI, which came back clear.

So far, I'm no longer suffering with bouts of dizziness, but I do still get mild tinnitus, and I have vision issues, which make me feel very off and off balance. I start to get pressure behind my eyes and in my sinuses, and then things start looking funny. My computer screen seems to tilt sideways, things seem to be moving that shouldn't be, etc.

I wake up almost every morning with the left side of my nose feeling clogged. I really feel like either a migraine is inflaming the left side of my head, or an allergy is causing the inflammation.

Still awaiting my neurologist appt in June. Will update everyone on how it goes.

Hope you all are feeling much better! Hang in there!

Skye


Beatle Mark congratulations on the Carousel. I bet you jumped up and down.

Skye Yes I had the same problem. You and I sound like we had very similiar symptoms. Hang in there. The other day I had the pressure thing but finally no vertigo with it. What a relief! Have you tried flaviods and niacin with the B. The niacin really kept the pressure controllable. Hope you feel better. Rember I went from getting it all the time to where I am now. Thanks to the Acupuntcturist and chriopracter that I was able to come across. Out of all of the doctors they were the most knowledgable.


Hi

Jose - I went through months of not being able to make eye to eye contact with anyone I was talking to and even now sometimes have problems. This is common with Labs.

Please, please don't take more pills than you are already taking. Once you are hit with Labs/VN, your brain needs time to compensate for the dodgy signals it is getting from yor damaged ear. It cannot do this if you are numbing your brain with pills. I know it is very hard to do but this illness takes a long time for any improvement for some people but you will get there. You can't loose sight of this fact. It is a very tough time that you are going through now but believe me you will recover. Focus your energy into changing your lifestyle. Change your diet to good wholesome foods and get your vitamins. Walk, walk, walk and walk some more!! This is what I have done and although I am not fully recovered I try and look on the bright side and enjoy the things I can do.

Larlie, I am so sorry that your daughter is suffering at the moment. It is wonderful that she has your support and believe me she is going to need it. It can be a very lonely illness to have as to other people you actually look perfectly normal and healthy. Stick by her and keep doing your research as most of us find that doctors are not much help! Feel free to ask any questions you might have, I'm sure there will be plenty!!

Skye - your theory about the allergies is very interesting! I have never really thought of it before but I have always thought of my 'bad' ear being my right one and the worst side of my nose for clogging is my right side - same side! I also suffer from mild tinnitis.

A few months ago I started to feel a bit worse and felt that my eyes were a micro second behind whatever I wanted to look at. If that makes sense - don't quite know how to describe it, but they definitely felt out of sync. I started my gaze stability exercises again and have felt a definite improvement, in both my vision and my dizziness/balance.

Do you do any of these types of exercise? If not, maybe they would be worth a try.

Take care everyone.

Sandie x


Hi, everyone

Rhonda - this time I have a question for you. I am going to fly - this time in the mountains of Utah resort area.Probably, you are the most experienced in flying on this page. To your opinion, what is the best way to be prepared for airplane flights? Generally speaking, people with perilymph fistulae of the ear are NOT adviced to have such pressure changes as during airplane flights. But I want to go with my husband on vacation so much!!! Life is going on - I have been housebound for more, than three years - it is a horror just to look back at what I have gone through...

Everybody - I read all the posts, just do not have enough time and strength to respond and to take part in discussions. But I am with you, friends!!!

Anna from Oklahoma - dizziness and headaches veteran.


Hi all

Found this site after being diagnosed with labyrinthitis for the second time, although I did not need to be told by the Dr what it was this time. I was just wondering if anyone out there has similar symptoms to me? I have severe vertigo but instead of being sick when I feel my stomach churning I usually pass out - collapsing in a heap wherever I am !!! This can be disconcerting for both me and anyone else around at the time - I usually know it is going to happen but as I do have to leave my seat during the day I have to risk it !! My daughter still has occasional nightmares remembering the last episode of lab that I had. As I am a Foster Carer the younger children have had to go to another carer for ????? How Long! I am feeling a little better at the moment and can at last see straight enough to type. My Dr is very good and works one day a week in an ENT Dept. He has insisted that I take sedatives at night as I have not had more than 1/2 - 2hrs sleep for 14 days, until he prescribed them - finishing them tomorrow so will have to see if I can sleep without them this time.

Thanks for the site by the way

Sharon


Hi all, Hope you are more or less okay. Sharon, your situation sounds dreadful.Has your doctor confirmed that you have labs? I never hear of anyone passing out from this. Are you sleeping badly because of the dizziness? Jose: I hope you are feeling somewhat better,although this condition caused a depression and insomnia in me for quite a while. Try and be philosophical, this will go away. Anna: I heard that flying can be a problem,but it sounds like you could handle it. It may be perfectly okay. Yesterday I took the metro(underground) for the first time in 7 months, and I had no problem at all.I was really dreading it,but it was fine. Skye,you mentioned allergies.My doctor prescribed a nasal spray, and it seems to help. I saw an ENT yesterday after waiting 5 months. He didn't know what it was but thought it could either be migraine or an inner ear problem, caused by a virus. He said he thought it was the ear, because I had been somewhat helped by Serc, which he said would do nothing for migraines.He thought I was pretty well over it, which I think I am. Sandie, I had the same problems with my eyes. Usually when Labs is at its worst.The ENT checked my eyes for that reason. All of us could write a book.We could include all the gory details. I think it would really help a lot of people. This is going around, both my next-door neighbour and son have it, although a much milder version. And people who have it seem to be depressed when they have it. Anna, we all hope you have a wonderful holiday.You deserve it after 3 years of suffering. I am trying to appreciate every day, because feeling better when I was feeling so rotten is a blessing. Take care everybody, we are not really sick.Just out of balance. Maria


Sharon - it is so sad, what you told us about your situation. Passing out every time when you have a vertigo attack.... - it's tough on your family and friends. I think, it happens because your body and mind are very smart - 1)they want to stabilize your head and to switch it off any possible movements 2) protect your personality from having harsh memories about the illness episodes. I read, that with Meneiere's and labs (or call it whatever) it happens in some people. In this situation you have to explain people, who are close to you, what to do in case you pass out. Sharon and others - after more then five years of being vertigenious, dizzy, tired, headachy, housebound, unable to work, unable to drive, depressed, irritable, etc. etc. (YOU, guys, know!)I am feeling happy, because I have have been improving slowly, gradually but steadily!!!

Never lose hope! When your bad days come - live it with dizziness and all kind of pains, let them pass badly - what can you do about it? But it will it will be BETTER TOMORROW.

Love,

Anna from OK


I just noticed something recently. Whenever I take a vitamin, it makes my vision/headaches worse. Anyone else experience this? Same thing with allergy meds. I tried a Claritin-D the other day, and oh man, I wouldn't know you were standing in front of me unless you slapped me in the face. Just so surreal.


Anna; I hope you have a wonderful vacation. You certaintly deserve it! The planes nowdays are as you probably already know are pressurize for under 10,000ft MSL. The thing that I figured out was it set off the motion sickness in the begining more that anything else. If you are still feeling well. I would give it a go. Maybe take mechazine with you just in case. The other thing My acupuncturest (Spelling) was niacin 250mg the flushing type. Really helped keep my ears in working order and flushed the junk out.With B6. She also suggested aspirin to keep the flushing at a minimum.(Side Effects) Try not to chew gum that just makes the tightening feeling worse. At least with me. Have Fun in Utah. Let every one know how it goes. Rhonda


Thank you for this! It is so comforting to see that all the "residual symptoms" I think are indicating something else are, in fact, just a normal part of this rather strange virus.

My problems actually began with major pain on the left side of my head and my jaw following a neck snapping by a chiropractor. My MD diagnosed a pinched cranial nerve, but my physio thought it was TMJ. Within a week and a half, I began experiencing isolated episodes of lightheadedness. The head pain has been gradually diminishing, now to the point where my occipital muscles and the muscles around my left eye and bridge of my nose give an occasional twinge - but has anyone else experienced the onset of labyrinthitis following TMJ or a pinched cranial nerve?

Things got progressively worse, until I was experiencing the full bore "mildly drunk" feeling with blurry, unfocussed vision. After a bad few days, I began to feel slowly better, although my vision was still a little compromised. My doctor took me off the serc, and a couple of days later, I was back to seeing the world through surreal eyes - as if someone had given me the wrong glasses. This lasted most of one day, then I felt okay - but wearing contact lenses a few days later brought it on again.

What I notice with glasses is that my vision is vaguely grainy or spotty, and it is hard to focus on words without having them begin to blur. The baffling thing is that the dizziness is gone, but I still having episodes of feeling nauseous; and I find that my energy levels are generally low. This is getting me down a lot. It has been about six weeks since I first started experiencing episodes of "lightheadedness" and it just seems to be lingering.

Every time I put in contact lenses, things seem alright for about an hour, and then the vision in my right eye begins to blur, and I begin feeling illish. If I leave them in too long, I end up with the vertigo-like symptoms again. What's up with that? I also experience intermittent throbbing around my left eye, temple, and sinus, and I'm unsure as to whether this is residual cranial nerve problems or labyrinthitis.

Any guidance or suggestions anyone might have would be welcome!

Thanks, Neil


Hi everyone: Anna,are you back from your holidays? If so, I hope you had a wonderful time,seeing your little grandson. How was the flying? Neil, I am sorry that you are having all these problems.Do you think you went off Serc too soon? My ENT told me that you can have a relapse if you go off it too soon. I was weaning myself off it,and was down to 8mg,and guess what everybody, the monster came back. So I am going back to 12mg.I also came down with a cold, which as everyone knows can really set you back.Maybe you should check with your eye doctor about the contact lenses. Maybe you shouldn't wear them if you are having problems. Jose, I hope you are starting to feel a bit better.It is hard, this thing really drags you down.It seems endless to me. I never feel 100%, it's always a little bit there. Does anyone ever have a low-grade fever with this? I have one today, and am wondering if it's normal? Or is it something not related. Another friendly virus maybe? Maybe this one will stick around even longer! Well at least we can laugh about it,ha,ha,ha! Appreciate all the good days,because bad days can pop up anytime. We shall (hopefully)overcome...some day! Regards Maria


Thanks for your feedback, Maria! Perhaps my doctor did take me off too early, but I was feeling pretty good, and he said that the Cerc was hard on the tummy.

Since I wrote the nausea has been less of a problem. I can wear my contact lenses for most of the day - but I still find that the vision in my right eye is fuzzy when I do so. Sometimes it's fine, mostly it's not. This is a worry, especially since a doctor friend of mine said it was "unusual" that labyrinthitis should be associated with blurry vision, per se. My feelings of vertigo are now rare, but this is a constant if and only if I wear my contacts.

Yesterday, I got frustrated and cupped my hand over my good eye for five minutes to see if the lack of focus would go away. When I removed my hand, the vision was good in both eyes, but I felt nauseous! After ten minutes, the fuzziness was back, but the nausea had gone away! What gives?

I continue to have anxiety about the head and face pain I occasionally get on my left side, although the onset of the pain is traceable back to when I got my neck snapped by a chiropractor, and has been diminishing (the first two weeks were brutal, and I was resorting to Advil every day). No I mostly feel it around my cheek, my temple, my left eye, and the bridge of my nose on the left side - occasionally on the top of my head, behind my ear, or the occipital region of the back of my head. I still think it's unrelated, but I wonder at times.

In essence, I'm a basket-case of anxiety. My doctor friend thinks I should go for a CT scan.

Neil


Hi All- First off, Anna, where in Utah did you travel to? I live in Utah! I'm actually traveling to a mountain resort here this weekend in Southern Utah called Zion National Park. It is gorgeous. Just wondering if you were anywhere near there. ;)

Second, I just wanted to send everyone an update. I have felt so so so much better the past two weeks. No dizziness, no off balance feeling, almost no tinnitus. This is the longest "feel good" span I've gone since this thing first hit me back in August of 07. Also, during these past two weeks, I've traveled twice. Once was by plane to Lake Tahoe (absolutely no problems and didn't have to take ANYTHING) and the second was by car on a camping trip. I hadn't been camping since this started and was sure nervous. Alas, no problems. Woo hoo!

I am hoping that this means that my body is finally healing. I hope that I am on the road to recovery. I'm cautiously optimistic, but trying to remain humble, knowing that these things can come back much more easily than they leave us. Fingers crossed, though.

I will keep you updated. If this lasts only two weeks, it's been a wonderful two weeks and I've appreciated every day.

I really hope this good feeling finds all of you as well very very soon! Let's beat this thing already! I hope this gives hope to at least some of you.

Take care all...be well. Skye


I have followed "Skye's" comments on this website from start to finish because it is almost the identical path I have been down. Was originally diagnosed with Labs that lasted almost 4 months. After 6 months of no symptoms, I have relapsed. It is very depressing. I can't remember what I've read so far here but do any or all of you suffer from ear pain at all? Like a dull stabbing pain that comes and goes? Also, do your legs feel like they are going different directions when you are walking?


Rhonda, Skye, Maria, and all my fellow-sufferers

I visited my children and grandson in the beginning of May. It boosted my energy so high! I had to lie down, or to sit down or just to retire in a quiet place many times during those days. Airplane flights (4 of them) were different, because the aircrafts that we boarded were of different age and quality, and we sat on “good” and “bad” seats in them. I thought I would pass out at one of the flights, when the plane was old, vibrating and our seats were in the rear, right next to the roaring turbines. Of course, I wore my Bose Quiet Comfort2 earphones, still – I was so tired, headachy. … But it does not matter – I did it! I visited my darlings!!!

Skye – our trip to Utah is cancelled – my husband is going on business to another place instead. Guess where – to Hawaii. He is inviting me with him in the middle of July. I have never been to Hawaii, it is so tempting! But I still hesitate. The longest flight duration is 7 hours )-: If I only were stronger - some days I feel so weak, so fragile.

Rhonda – I did not understand what “flushing with niacin and vitamins” means. Is it oral? Or is it irrigating your outer ear channels?

Hugs,

Have a good weekend.

Anna


Hi all:

Anna,I thought about you many times in the past week.Congratulations! You did so well! How nice that you saw your new grandchild. You probably need to rest,but you did it! Hawaii sounds great, especially if you can lie on the beach all day! Anyway, welcome home! I know how you feel about feeling weak and fragile.I had a setback,but am now feeling better, although not great. My chiropractor told me that his other patients with labs are all complaining that they are feeling worse these days.We are having lots of up and down temperatures. Have any of you noticed that? Weather seems to be an irritant. Melyn, I have a dull earache when my labs is acting up.Comes and goes,and a kind of fluttering. Always in the same ear. Also, like you,I feel funny when I walk.Like you described. Also the top of my nose will hurt. Has anyone heard whether this can calcify and lead to permanent ear/hearing damage?I heard that and it scares me.

love to you all, Maria


Hi Anna Glad you had a great trip. I got to go to Hawaii with my Husband and just getting out of the area. (alergy wise) made a huge difference! I am sure you will enjoy it. The term flushing was what my Acupuncturist used. I assumed she meant it as supposed to bad toxins in the ear. But you know what happens when you assume. All I know is 250miligrams of niacin twice a day with B 6 has made a huge difference. Glad everything went well Rhonda


Hi everyone,

Nice to see that some of you are feeling better!

I am at a good place at the moment - still having 'blips' where I feel dizzy and have awful feelings in my head but they don't last too long. I have passed the three year mark with this but it is over a year since I had a relapse, i.e. where I couldn't work etc. That relapse lasted from early May into July last year so that't my next goal - getting past July so I can say it is a year since I recovered again!

Anna I know that you have had this for many many years - what is the longest period that you actually felt 100% better between relapses? By 100%, I mean completely free of any symptoms. Over the last three years, though I have had some really excellent days, I would never consider myself fully recovered.

Melyn - my first bout of Labs/VN lasted nearly six months, then I had a relapse of 3 weeks in my second year, then my third relapse lasted 10 weeks in my third year. I do get ear pain, which is like a stabbing pain usually in my left ear, which is my bad ear, though I have never had this diagnosed medically. I just always seem to suffer more symptoms in this ear i.e. fullness, 'fluttering', and pain. The pain usually only lasts a minute or so and is not a regular thing but it does hurt when it happens. And, yeah, I have suffered a lot of balance problems, and you do feel like your legs are all over the place, like the ground is moving and your legs are made of marshmallows! This is another symptom that will improve given time. Take care and keep fighting.

Sandie


Hi all

Getting a little better now and my GP has offered Balance Therapy to try to alleviate some of the symptoms - he is ENT trained.

I hope you are all feeling a little better and would like to thank you for all your posts and the responses I had from some of you to my one.

We had to cancel our family holiday due to my being unable to drive - or even leave the house!! Have rebooked for the summer hoping to be able to go by then.

I will let you know if I have any positive outcomes from the therapy - would love to hear if any of you have gone down this route before.

Sharon


Hi. Thanks to all who responded to me. Since my last post, have been having a spasm in my neck behind my ear down to shoulder that I didn't have first time I had a "LABS" diagnosis. After research, found this is called the sternocleidomastoid (SCM) muscle. This led to my researching that and finding that TMJ issues can trigger this muscle to spasm and lead to inner ear issues often misdiagnosed at Meniere's. Am going to look into this more as it makes sense to me. I have always had teeth clenching issues. Anyways, FYI, in case it may help anyone...Here is a link to a dentist in Atlanta that explains it more: http://www.atlantadentist.com/TMJ_Dizziness.html


Hello,

I have had constant scary lightheadedness with constant tinnitus for 15 year or more, maybe 30 years. I have never gotten sick from my dizziness. I did hit my head at age 6 on the corner of a camper trailer and have felt dizzy like that ever since. Maybe this has something to do with my severe dizziness. My dizziness has gotten to a point where my quality of life has drastically diminished. I feel my work productivity and working relationships is affecting my job responsibilities. This on-going dizziness is causing me to feel hopeless each and every day. I have exhausted practically all medical aspects to find a diagnosis for this challenging handicap. I find it extremely difficult to get through each work day. Even though my dizziness is constant, I have had many attacks of severe dizziness where I would end up bedridden. In Nov 2003, I had an extreme episode of dizziness which totally incapacitated me. I was bed-ridden for over 30 hours. I was not able to us the bathroom facilities (toilet, etc.) and I was also not able to sit up in bed to eat as this would cause intense spinning. My spouse was at my bed-side 24/7; I felt totally helpless. Just recently on 28 Apr 08, 4 Jun and 7 Jun, I had severe bouts of dizziness that were similar to the attack on Nov 03. My dizziness is getting much worse. I have had an MRI of my head and vestibular area to check for tumors but the MRI was normal. I have also seen an ENT and neurologist who could not find a cause for my severe dizziness. I had many hearing exams and also had an ENG which was normal except for the caloric part of the exam which I could not finish due to the test causing me highly intense dizziness. My condition is 100 percent uncontrollable and causes me extreme stress with heaving heartbeats and it can get very scary at times. I need to take medication to knock me out in order to sleep. Because of my dizziness, I haven't had a good night's rest/sleep in over a month. I need to sleep. When I do get sleep, it's by sitting in an up-right position and with the assistance of medication. I have to lie absolutely still and it is still practically impossible to fall asleep without medication because my dizziness is so intense for me to naturally fall to sleep.

Has 'anyone' had these symptoms? I want this dizziness GONE! Please help.

Thank you for your time. I truly truly appreciate it.

My email is: richerlife@hotmail.com.


Meylen thanks for the name of that muscle I wondered what it was.That would be great news if you were misdiagnosed. Don sorry to hear about your symptoms it gets very discouraging to have something. for that long. Keep reading you might find something that worked for someone else might work for you. I also wanted to mention I have started getting allergy shots the ones where they test you for allergies and then use the syrum weekly as shots. I have noticed since I have been getting them for 6 weeks now my symptoms get worse each week again, but are still contrallabe. I am hoping this is a good sign that my body is trying to buil immunity to allergies. Sure is unpleasant in the meantime, but not a 10th of what they used to be. Hope you start to feel better to Don. Hope everyone is doing better. Sandie: I have had days the most a couple of months with out any symptoms and then the wind will start blowing and I feel like crap again, the differnce that makes me not worry about it is that the symptoms are decreasing. except after the shots I mentioned earlier. And I can still function durring the day without issues If I do have a bad day I just take motrin and get my neck reajdusted by the chriopractor. That in itself is a huge relief. Stay well! Rhonda


Hi everyone.......

Haven't posted for a long, long time as I felt I was now well & truly over after two and a half years , but reading Don's email made me so very sad again and highlighted the extreme "varying degrees" of our subjective illness.

Yours must be one of the worse cases ever posted Don and I feel so sorry for your suffering with "constant" dizziness but am also amazed that you are still able to work with your symptoms. My dizziness is only sporadic (my neck pain is worse) and I worked for the middle 12 months and then retired at 55.

We know now that this horrible affliction can be triggered by practically anything - a blow to the head, a viral infection, tmj / dental work / teeth clenching, labrynthitis, menieres, ear problems, whiplash, trauma, extreme stress, hormones, menopausal, age related, degenerative arthritic problems, muscle spasm, bad posture, cervical damage, spondylosis etc. etc. etc. The medical profession are reluctant to diagnose or suggest treatment because dizziness is often so very subjective.

What helped me was Ginkgo Biloba, good diet, tai chi, nightly alcohol to change the equilibrium, lots & lots of walking, amitryptilene (relaxees neck muscles, aids sleep & stops dizziness). I had not realised how much lack of sleep and fear of this condition lets it " take over " and leads to depression - a cycle which makes the symptoms much worse. Finishing the daily drudge and changing my lifestyle has really helped.

So, hang in there Don, your MRI scan was not bad news and if you could just get something to help you sleep it would be a start. I am sure all the faithful veterans of this site will come to your aid in no time at all.

good luck & best wishes for the future , sue.

(PS> My last post, but a million thanks to Richard Baker for this wonderful site)


Don - hang in there, my friend! We are with you. You are not alone. Do not forget, that you have your loving wife at your side. Really good news that your MRI test is normal! Vestibular disorders are scary, they last long periods of time, they are exhausting, frustrating, debilitating. They have very little understanding, nobody knows what they are and how to improve our quality of life. Vestibular disorders are hard on us and our families. We are victims of this MONSTER, but we are very-very STRONG, oh, God knows how STRONG WE ARE!

I was like you, Don for many months starting from November 2003!!! I could not sleep at all sometimes for several nights and days, total NIGHTMARE,sick and dizzy, lost weight, could not even go to the bathroom by myself, could not take a shower. I looked like I was drunk for years, yes, for YEARS. Because of my health condition -constant dizziness and daily severe headaches I was forced to retire at age 54. Educated person -PhD in Metallurgical Engineering, a mother of two wonderful children, Russian born living in Oklahoma, I was granted a "funny" status of DISABLED person. My symptoms started when I was only 20 years old after hepatitis A infection. Now I am 56 years old and I am feeling so BETTER, that I am going to fly to Hawaii with my husband for a ten day vacation!

Don - I am one of the veterans of this site, like Sue, who posted in response to your HELP cry. Do not lose hope, at first just try to survive this nightmare, to improve your diet IS imperative(no SALT ADDED, sugars in moderation!) eat natural things - lots and lots of fruits and vegetables, Ginkgo Biloba supplement. Do whatever is COMFORTABLE and whatever is RELAXING for you in the beginning, and then start to walk with help, with crutches, with cane (I did!), hold somebody's hand, or furniture, or walls. The more you WALK - the BETTER.Celebrate your everyday victories over your pain and fatigue no matter how little they seem. Your condition will improve, beleive me. Just look at my posts, look how I have improved TREMENDOUSELY. Step by step, with ups and downs, with moans and tears, my teeth and my fists clunched with tension, month after month, year after year.

Rich Baker - thank you again, like one guy said "Rich is a gentleman".

Hugs to all who are sick with this horrible condition.

Anna


Hi everyone

Hope you are all feeling better.

Kim from the UK - how are you? You have not posted for a while.

I haven't been too bad. This time last year I was quite ill, balance shot and dizziness was with me big time. I was off work for 10 weeks. I have been taking antihistamines every day for the last year and have been dreading this time of year arriving. I have had a small return of symptoms where I feel the world has moved from under me, but some days I am OK. So, that's good news. Three years on, still fighting it, but trying to remain positive and live my life to the full!

I can't agree more with Anna that you must eat healthily and take good care of yourself. And, walk, walk and walk some more. I still get out and about for lots of walks and apart from helping your brain to get used to lots of different stimuli, it is really uplifting for your spirits and makes you feel good.

Take care

Sandie


Hi

Well in my last post and to all my friends and family I have been saying how well I have been, just minor symptoms along the way, when WHAM, two days ago it hit me big style.

I was at work when I started to feel quite ill - very dizzy and loss of balance. I have had quite a few dizzy spells over the last few months but nothing major and my balance has been great. But on Thursday, I felt it all returning. By late afternoon I could hardly stand up and ended up a crying sobbing wreck. Obviously I had to go home and lay on the bed for a couple of hours. I felt better later on but yesterday was the day from hell. This was a different type of dizziness for me, kind of spinning in the head, whereas in the past my dizziness has been like a 'sickly' dizziness. Anyway, yesterday my period started and it has been 46 days since my last one. This happened last time also where I had a gap of 48 days between periods but no dizziness or anything. Today, I actually feel quite good, just slight dizziness. I am wondering if it is because of a massive hormone surge or something like that, that this has happened. I am 47 years old and obviously starting to become menopausal!

I was so upset two days ago thinking that it was back and it would be taking me months to get over it again but today I feel more positive as I feel much better. Only thing is I lose wages, no work, no money. That's the annoying thing! And, I get very worried that if I have any more sick leave I will lose my job.

However, hopefully I will be back next week if I continue to improve. My daugther says I have to be better for tomorrow as she wants me to take her to meet her fave band, Elliot Minor! Life goes on for all those around us!

Take care all.

Love Sandie x


Hi all,

I've been extremely dizzy for the last two weeks: I've had the worst headache in the world for the same amount of time and my husband suggested it could be labyrinthitis. I've been to see the doctor three times since I've had this headache, been in bed for the remainder of the time and my head just keeps spinning and spinning. Any time I try to do something (like dishes) I end up almost fainting.

Yesterday I went to see the dr's again. They diagnosed me with shingles and also prescribed prochlorperazine for the extreme dizziness and nausea. I think the hearing on one side is going (it's definitely worse than it was before), my ears occasionally start ringing (mainly after doing something, when I'm worn out), and it feels like I'm constantly under water.

Lying still in bed doesn't seem to want to improve anything either. My head has been spinning constantly for the last two weeks, which has lead to trouble sleeping - extremely vivid dreams if I do sleep, and anxiety... especially afraid of falling down the stairs when I get up.

Just wondering if this rings any bells and how long it would take for the prochlorperazine to start working on the dizziness...

Emily


Hey everyone, First off, I'm sorry that I haven't posted for a few weeks. I received a promotion at work, which is great for my morale, but added about 10 more hours to my 50 hour work week. I've been working non-stop, and it is definitely taking it's toll.

First off, Melyn, it's nice to meet you. I'm glad that some of the things I've written over the course of this illness/problem have resonated with you. I'm sad that you are going through something similar to what I am, but glad that perhaps you know that you aren't suffering alone. I too looked into the TMJ route. I do suffer from TMJ, but am still trying to find a good TMJ doctor to see here in Utah. I do hope that you find your answer with a TMJ specialist.

I had been feeling great for nearly 6 weeks, my longest stretch ever, when just last weekend my tinnitus came back very loudly. It wasn't a great surprise when I woke up yesterday to find that my ear felt full again. It was dissappointing, though. What I can surmise is that the change of weather is having a profound affect on my ear. It stayed fairly cool here in Utah up through about two weeks ago. Then suddenly it went from cool to very very hot. I think that allergies, plus the weather change, have greatly affected my ear. (I'm sure that the added stress at work isn't helping either)

Coincidentally, I had to cancel my trip to Chicago to see Dr. Hain, a dizziness specialist. I'm going to try to reschedule for later in the year. I did, however, get into a local neuro here in Utah, and she thinks that part of my problem is in fact migraine-related. She prescribed me a migraine preventative med that I'm going to try. I will let you know how it all goes.

Anna-I'm so excited that you get to go to Hawaii! I can't wait to hear how it goes. It's awesome that you are on this site, offering advise to newbies. I remember how comforting it was to hear from you.

Rhonda, Maria and other Anna-Love that you are still on here offering advise and helping people. You guys rock.

Sandie-I've been wondering about you. I hope that you are feeling better, and that your "bad" side is giving you some relief. Also, I believe that you were the person that mentioned living under a pylon not long ago. One day while I was at lunch with my mom, she mentioned to me that one of our childhood neighbors had died recently, at a young age. Then she went on to mention how most of the "moms" that were on the street I grew up on either died or became seriously ill in their thirties, forties and fifties. Three had cancer, one went blind due to an illness, my mom now has Rheumatoid Arthritis, two developed MS, and one has Parkinson's. (BTW, our cul de sac was small, so this covers nearly every family) Several of their children, myself included now, have also had serious health issues. I jokingly asked her if we grew up near pylons, as i couldn't really remember (memory has become fuzzy since this began) and she said, "YES! There were several pylons surrounding our neighborhood."

Something to think about, I guess. Could all be a coincidence, or maybe not.

Anyway, I really do hope everyone is feeling well. I'll try to post a bit more often.

Take care... Skye


as i am writing this my head is spinning and i'm lost in a world of my own. I have suffered with labs since i was 10 weeks pregnant. My son is now 3 months and i'm still getting attacks of the virus. It's very disheartening when you have a little one that needs your attention all the time but you spend most your time looking down the toilet and struggling to overcome dizziness. I'm breast feeding at the moment so medication is a no no at the moment unless anyone knows of any remedy thats safe while breast feeding - please let me know


Hi,all

I have not been posting for a while.

Guess what - I have got a new doctor. She told me one very clever thing. She suggested, that I can benefit even more if IN ADDITION to a sodium-free (table salt-free) diet I will take DUIRETICS!!!! Prescription strength. I immediately said - YES, YES it makes sense! Diuretics will remove even more soduim (Na) from my body with urine. Only it is important to watch my blood for postassium (K) level. Bravo, Dr. English of Warren Clinic Stillwater, OK!!!

I have been on Lasix (diuretic) for 11 days now and can see further IMPROVEMENT (!) in my condition. I can handle noises much better without getting dizzy (my worst problem for more than 4 years). It looks like even this slightly wrong Na-K body fluids' balance affects my inner ears so dramatically. Friends - I even had "light and easy" level airobics class yesterday. I enjoyed it so much! The insructor suggested, that I can try "zumbar" (mixed belley dancing, latin samba-rumba, airobics). She said, that I moved great - guys, she did NOT see anything wrong with me (wow - with my condition). Sure, I will try this dancing class (I used to love dancing)!!!

Dear friends - everybody - I WISH you all good luck! Look at my story and never-ever lose HOPE.

I will be around

Anna


Hi all: it's great to hear from you all.Amanda,you are doing very well looking after a baby in your condition. This labs thing is the pits.Up and down like a yo-yo.Remember,you are not alone.The rest of us are in the same boat, and most of us aren't looking after babies! You are probably over tired too.We are all thinking about you.I find it consoling to know that I am not alone,have been fighting this for 9 months,although lately it's been better. Skye, I am having the same problem as you.The minute there is a change in the weather,I start feeling off again. I just have to have the beginning of a runny nose,and bang it comes back. Must be the air pressure, the pollution,the change from hot to cold, air conditioning going on,going off etc. Really gets me down.Feels like I will never get over it.I try to walk as much as possible,but sometimes, my legs feel like jelly. Does anyone find that bright artificial lighting makes it worse? Skye, I would be interested to hear if the migraine medication helps. The specialist I saw told me mine might be too, but thought it was ear-related. Anna, thanks for the advice about diuretics. I will definately discuss it with my doctor. Do you have any side effects? Were you ever on Serc? I am still on a very small amount,seems to help a bit. Sandie. the first time I had labs was 9 years ago,I was going through Menopause. I didn't even go for help,because that's what I thought it was.But now I think it was VL,but menopause made it worse.You get hot and that makes you dizzy.Did you ask the doctor? Emily, are you feeling better at all? I hope the medication is helping.Did the Dr.confirm it was VL.My mother suffered for years from Migraines and had similar symptoms to yours. This is a very lonely condition, I find. Pretty well everyone thinks I am a hypochondriac,except my chiropractor.He has 3 other patients who started when I started,and are still having problems. He mentioned the others were complaining that it was worse when the weather changes. But the weather changes so often! Anna, think of all your fellow-sufferers when you lie on the beach in Hawaii. You will enjoy yourself,it's so beautiful. You deserve a nice holiday. Take care everyone.Let's all try and take one day at a time. Love xxx, Maria


Hi Maria,

Unfortunately the meds have started working somewhat I think. I'm not as nauseated as I was before, but the dizziness is still there. Some days worse than others, but definitely a constant dizziness.

My doctor sent me to the hospital last week because my symptoms hadn't approved much and I walked into a wall at her office too. Her preliminary diagnosis was labyrinthitis or encephalitis.

At the hospital I had some blood tests done, not entirely sure what for. They did check my symptoms for bacterial meningitis and/or stroke. Fortunately for me, those two weren't it. SO I got sent home with the diagnosis viral infection.

I've suffered from migraines since I was 15 (20 years-ish) and never had dizziness included in my symptoms. Nor has a migraine attack ever lasted three weeks.

Thanks for listening to me rant. I need to lie down again...

Emily


Hello Anna I have not posted in a while either, that is terrific. I have heard the same thing suggested from my doctor. But everything else she suggested worked so well. I did not go that direction. Thats great news!

Skye; I had the migranes but like I have mentioned in earlier posts for me The migranes were the symptom not the cause. There are miracles. Also you mentioned TMJ I had probably a very light case of that. However, since I have been going to the acupunturist it has not only loosened my neck up but my jaw as well. I went last friday for an accupuncture appointment for the neck issue which is now 90% under control.When she put a needle in a spot for my neck my jaw actually moved. That is how tight that muscle was! Headache went away instantly,

Sandie; Sorry to hear your not feeling well. I know that for me the sickly part went away when I stopped taking birth control. I actually had forgotten cause I was feeling pretty crumy. Then after 4 days I started to feel better. Then when I started to take them again, Like you said Wham I felt even worse than before. Since I have been off the birth control. My nautiousness has completely gone away. Now if I do get a small issue again, It is not accompanied by the motion sickness. Which to me was worse than that dizzines crap.

Maria; Yes lighting makes it worse! Especially if it is with a migrane. hope you feel better.

amanda; Sorry to hear you are not feeling better. Keep reading posts maybe you can find someone with symptoms similiar to yours and start to feel better sooner rather than later. I started the shots for allergies and they have made a Huge improvement for me along with the neck adjustments and the allergy medicine.

Thank you for the info I hope some of this helps.


Hi,

Thank-you for your posts. It is so reassuring to read other similar experiences. I have had dizziness now for two months. I have been diagnosed with BPPV and had the Epley but I am still left with this horrible brain fog or "cloudy sensorium". So maybe not BPPV? Maybe labyrinthitis? This really is a horrible condition and it just makes you so tired. I suppose because your brain is trying to adjust all the time? My neuro-physio says that I must still have crystals floating around but do they ever go away?


Hi everyone

A good day for me today, yippee! Had a pretty rough weekend though.

This time for me it is so different to what I have experienced in the past and I am now thinking more towards BPPV.

I thought it might have been a surge of hormones, as I mentioned in my last post but it doesn't look like it as it hasn't settled much!

I would say it is more like vertigo now as I feel like there is a washing machine in my head and these attacks which can happen every half hour or so will last only about a minute. Then of course, there is the nausea to deal with all day. That is why I am looking to BPPV.

I am wondering if this is par for the course with someone who has a vestibular injury. Also, of course there is the allergy angle as I have suffered a rise in allergies over the last two years though nothing too serious. But, it must just be enough to tip me over the edge. I blamed my last relapse on hayfever and this relapse has co-incided with the hayfever season. Oh, I am so confused, I wish it would go away. I am a good person and I do not deserve this, haha!!

Skye - yes it was me who mentioned the pylons and that is a sorry tale you tell. I know for definite there is something sinister about these things but the government just won't release anything because the electricity boards will have the pants sued off them. So, there you go everything is kept 'hush hush' and us poor public go about out daily lives not knowing anything.

Maria - thanks for your comments on the menopause. It is such a bummer, we go through it all us woman don't we? I think just about everything has an effect on us poor sufferers with vestibular problems. I haven't really asked the doctor because to me the doctors know very little about anything - jack of all trades master of none - that's what I say! And, you are right this is a very lonely condition. You slowly lose contact with people the longer it drags on. I suppose they get sick of asking you to do stuff and getting knocked back, I suppose they think that you don't really want to be with them and that you are just making excuses. Nobody knows how it feels to be you, apart from others suffering the same thing. I would so much rather have something physically wrong with me than this invisible illness.

Rhonda - birth control pills don't affect me in any way because I don't use them. I stopped a long time ago because of pains I was getting in my legs but that's another story!!

Anna - you have improved so much over the last few months. Enjoy your aerobics - go for it girl!

Love to you all.

Sandie x


Hi all ~

Been so busy with dr's - have not had a chance to visit this post. Last I wrote, I was checking into whether TMJ could be causing these issues with my ear.

Skye, I did find a TMJ specialist and he was positive I have vestibular migraines. I was given an anti depressant and told to come back in 6 weeks. Well, I took it two days and it worsened my symptoms. I do not believe I have migraines because I don't have any headaches at all. So decided to see a chiro for my neck since it was so tight, I could barely move it. That has helped tremendously with stiffness but afraid it is a short term relief. Also, went back to my ENT and he gave me the patch to wear behind ear which just made me drowsy. The dizziness has subsided about 90% except when I turn over in bed or look at this computer. My main symptom is feeling off balance and weak in the legs. I feel like I am moving when I am still. No one understands what I am saying which makes me stressed even more. Next I will see a neurotologist and a neuromuscular dentist as I am still positive the TMJ and the inner ear issues I have are related.

Sandie~ My symptoms are 10x worse the week before my period and I know its from hormonal changes. I get B-12 injections during that time to help with energy.

Anna -I would love to try diuretics as I have read several times that helps but my ENT said it would not help me as those only help people with Meniere's or Hydrops..don't know who else to ask.

Just so frustrated with the time and money spent on these specialist and NO help whatsoever!!

Need to keep praying... :(


Hi there,.. I am having symptoms of VL. It all started a few months ago when I had a bad stomach virus that left me feeling down and feverish for about a month. Then the dizzyness started! Its been about two months. I had lots of blood tests done when I was sick with stomach virus and all came back clear. I called my GP when dizzyness started and he said inner ear infection give it a month or so,...yeah right! I wish it was that easy! I also got married last week,...luckly I could walk down the isle! I just want to ask,..have any of you had swollen glands with this? I have lymph nodes swollen in my neck (on the bad side) and in my armpits! They are quite uncomfortable and scary,....has anyone else had this symptom? Thanks so much for all your post! Its so nice to know that someone understands. Leslie


Hi all,

I've just come back from the doctor's with another set of pills which will hopefully help with the dizziness and nausea. The doctor I saw today at my medical centre says he thinks my balance centre has been affected by the viral infection I've been battling for the last month now. He wants to see me again next week and until then, no work at all (I couldn't even if I tried).

Emily


Hello. I'm new to this site. I'm from a small town in Northern B.C. Canada. My story is, back in March I had a bad flu bug that attacked my upper respitory area. As soon as I recovered from that, on March 31st I woke up and was staggering around my bed room. I went to emergency and the doctor tested me for everything. Good news, I am healthy, just a virus attacking my inner ear!!! The dizziness continued to get worse until April 23, I had to take some time off work. I honestly thought it was only going to take a couple of weeks of bed rest to be back to 100%. I've still not returned to work. For the past few weeks I have noticed improvement, thank goodness. Ive been going to physio once a week and he works on my neck to loosen things up. It has helped a great deal. He also has done the Epley maneauver on me about three times which helped a bit, but not enough. I've also had accupuncture, I'm not sure that helped. I've been taking homeopathy and getting quite a bit of relief from that. I have a naturopathic doctor helping me with the homeopathy remedy. I take Natrum Salicylic 30CH, 4 globules twice a day for the past week. She wants to continue this for another 2 days than we'll take it from there! Seems to be helping quite a bit. There's a lot of different homeopathy to try, what works for one doesn't necessarily work for everyone. It's best to talk to a professional. I have also been doing the Gaze Stabilization exercises, and the turning exercises posted by Frances on this site a few pages ago. Thank you Frances for sharing that info. I've noticed a difference since I've been doing those. My husband and I go out walking every night. I love to get out of the house as often as I can to go for a walk. I feel normal when I do normal, every day things. I'm off to see an ENT specialist next week. I'll see what he has to say. I'm also having a CT scan just to cover all the basis. The nausea has pretty well gone away since I've been using the homeopathy. I'm going to be the happiest, most grateful person once I'm completely recovered from this. I'm so grateful for this site. I was a complete wreck before I found this. People have said to me, "Isn't it nice to have a break from work while it's summer time". Actually, no it's not nice, I'd much rather be at work. This isn't a holiday!!!! A bad day at work is way better than this experience. People have even told me they were envious of me since I get to relax all day. This is nothing to be envious about. A few weeks ago when things were really bad, I was in tears practically every day. I just wanted my life back. It's lucky the majority of people will never experience this so they have no idea what it's like. Wouldn't it be nice if none of us ever had to experience this. I keep talling myself, people to recover from this and it's not life threatening so things could be worse. Anyway, thanks for all the info. Lot


Hi everyone, So sorry to read of everyone's suffering. Don't know if this is what my little girl has or not. Sure sounds likely. She has just turned 10, never been sick a day in her life other than ocassional cold until last Thanksgiving. She has been sick 7 months now. Missed lots of school, dropped PE, Band & Ballet. Couldn't participate because of Headaches, chestpain & loss of balance and stomach problems. It started with a cold, relapsed into a Viral condition and apparently became walking pnuemonia although she didn't present a fever... By Christmas vacation we thought two weeks rest would put it behind her. Unfortunately, she slipped on wooden floors and started complaining of chest pain & headaches. Dr's said it was "Costochrondritis", a common condition in preteens as their breastbone is soft tissue & bruises easily, especially after a viral condition.SOrt of a Plueresy. They told us it would get better month by month. It didn't ever completely. She hurts around her ribcage & over her chest often.It then went from bad to worse as she developed other symptoms.She was given 3 courses of Antibiotics plus Predesone. Always feels off balance, her head always hurts to some degree and she complains of a heaviness, or weights in her head going from side to side. Says it's hard to keep her head up at times. Other symptoms have included spinning in her head, sudden flushness in her face (bright Pink checks), she describes as heating up inside. At times she has had blurred vision too. She is almost always nausus after meals, in car rides, laying down in her bed... We have been to numerous Dr's, including a Pediartic Nuerologist at the famous Linda Childrens Hospital. big disappointment. Dr. said it was probally puberty and didn't run any tests or offer any other ideas. She suggested a Rhumatologist. WHy we don't know. Symptoms didn't warrent it. We returned to our personal DR & ran a chest/stomach CAT Scan, EKG, bloodwork, tithers for Lyme, Mono, West nile... you name it. All negative, thank God. He decided since all was normal must be phychosyptomatic. I couldn't beleive my ears. Changed Doctors. Working with an Immunogist now. He thought it was Sinusitis, had Sinus Xrays & Catscan of head done. All appears normal, yet she still has front lobe, over eye sensitivity and pain upon examination. He is now testing for allergies, but after reading all your posts LAB looks very likely. I feel so worthless as a Mom. I promissed her months ago we would get her better and nothing. Due to headaches and balance issues she can't hardly read anymore. Her quality of life is deminishing daily. What should I do next? Any suggestions? Appreciate anyhelp offered.


Please Everyone: If you've been suffering from Labs for longer than 2 months - please, please talk with your Doctor about Migraine Disease.

Melyn- it breaks my heart to hear you say your doctor suggested Vestibular Migraine and you don't agree because you don't have headaches. You don't Need Headaches to have Migraine, and all of the Horrible symptoms it causes!!!

PLEASE: Research it. Just google Migraine Associated Vertigo, and read, read, read!!!! You are so fortunate that your doctor even suggested it!!! Its controversial, and many doctors don't agree that there is even such a thing, however, do your own research. People are being treated for it and having results (myself included). Who cares what its called if you can feel better???????????????

To Everyone reading this: If you have been suffering for more than 4 -6 weeks you owe it to yourself to check into Migraines. Migraine Associated Vertigo. (And don't be surprised if your Doctor hasn't heard of it yet). Do your own research.


Hi everyone: Sounds like quite a few of us are still having a difficult time. I have been feeling more or less okay, but sometimes, like you I feel like my legs are made of jelly,and that I'm being pulled down. Tomorrow I am going to visit a friend who lives about 2.5 hours away. I will be driving and it's the first time since last September that I've left the city. Believe it or not, I'm a nervous wreck about doing this drive. What if I get the dizzies and I'm in the middle of nowhere? Well I will try it and keep you posted. Otherwise, my life is more or less back to normal, but I still have setbacks. Sandie: you sound like you have been having a really rough time. What is BPPV? My chiropractor says I have vertigo. I agree that allergies and weather makes it worse. Maybe you should see an ENT. I agree you don't deserve this. None of us does,and I wish it would be easier to get rid of. It's the lack of control, that's hard. You never know when the thing is going to rear its ugly head. We are all thinking about you. Hope things improve. You were doing so well. Melyn, we understand what you are going through. And you are right, no one understands. The weakness in the legs is a common symptom, and it's really tough when you are going through it. I find I never feel completely ok. 90-95% but never 100%. Sandie, was that you that mentioned that? Lot: yours sounds like a typical course of this condition. Mine has dragged on for 9 months. I was in tears a lot over the winter, but now it's better. I totally agree, a rotten day at work is way better than this. At least a rotten day, you don't feel like you are going to fall down. Unless you are very lucky, Lot, this thing isn't going away without a fight. You will be very fortunate if it clears up soon. That's great that you are able to walk so much, doesn't it make you dizzy? That's great that you can feel normal.I was pretty well housebound for most of the winter.I know Anna was housebound for years. Anna are you back?

I try to be grateful for every good day. That's pretty well all any of us can do at this point.

Love to you all

Maria


Hi Anna

Hope you are keeping well. Just a short question for you - you have mentioned your bose earplugs many times and said that they are excellent.

Can I ask if they are actually earplugs or over the head plugs? I have tried a few sets of plugs with no luck so far.

I don't know what it is in this country with people and their kids but they just let them squeal and squeal at the top of their voices. This makes my trips to the supermarket pretty miserable and it goes on and on. Being noise sensitive I would love to block this out with a comfortable set of earplugs!!!Thanks.

Sandie


Hi everyone!

It's a lovely day here in the UK - about time we had some sunshine, it's been an awful summer so far.

Ana - I really feel for you and the distress you must feel over your daughter's illness. My daughter is 11 years old and like yours has been ill for the past year and it has been an absolute nightmare. She too has missed lots of school over the last year.

A lot of it was to do with puberty as she was quite ill with her tummy and headaches and dizziness before she actually started her period. She had just turned 10 when she had her first period and ended up in hospital with it. She then had severe acid reflux for months which was horrendous with constant tummy pain, chest pain and headaches. She also ended up having hospital treatment for this but it has all settled down now and she has been fine lately. But I do know what it feels like when you feel so helpless and can't do anything for your child and the doctors seem clueless!

I myself have had pneumonia and pleurisy (at the same time) and this is very painful. It took me 5 months to get over the pain and then another six months before I felt like I had recovered. I too was given stronger and stronger antibiotics to shift it as nothing was working.

To me it seems that Labs is a definite possibilty as the dizziness, heavy head feelings and lack of balance are all part of it and she has had the upper respiratory tract infection that this usually follows.

Since starting with Labs I have had a lot of allergies which I have never suffered from before. And, allergies make the dizziness and balance problems worse as your ears, nose and throat are all connected.

I don't know how long she has suffered with the dizziness etc but Labs usually lasts for about 6 weeks and then there is usually complete recovery. Most of us on this message board have gone on for longer than that because our brains cannot compensate for the damage done to the inner ear. She should be referred to ENT or a neurotologist and I am sure you will get some answers there. They will run a variety of tests and see if the ear is to blame for her problems.

You say that she cannot read a book and in the early days for me this was impossible, I could not watch TV or even use the phone as I was so noise sensitive. Even people talking to you can send you spinning.

I hope you find some answers but don't forget if it is her ear, be positive, it is not life threatening and with loads of support from you she will get back to living a normal life or as near normal as it can be! I hope she's one of the lucky ones! Have a look at the inner ear disorders board, the link is at the top of this page, right hand side - there's loads of information in the sticky at the top of the first page.

Maria you will have completed your long drive by now. How did it go? I hope it went well for you.

BPPV is where the crystals in your ears move about from the place they should be and cause intense vertigo for a couple of minutes at a time which is what I was suffering. However, on hindsight I think that this was not now the cause of my relapse.

I have had the MUMPS!!!!! Yes, would you believe it, 47 years old and I go down with the mumps and my god it's painful! With mumps, there is an incubation period before symptoms appear of up to 24 days. My dizzies started 18 days before the mumps symptoms appeared so I think the virus entering my body has caused the relapse. I am feeling much better now and as soon as the symptoms appeared the vertigo subsided. I have however suffered from terrible earache. Anyway, I am still suffering minor dizzies but nothing too bad and I go on my holidays on Saturday so I hope its all shifted by then. Maria, I have already been down the ENT route and feel it has all been a waste of time. Yes, they can tell you that it is your ears causing the problems but then what happens - same for everyone - VRT and get on with your life.

Yes it was me that said I have never felt 100% better for the last three years, but hey I'm happy with 95%! At least you can function near normally! But, there is always that feeling at the back of your mind that it's going to hit again who knows when, who knows where.

Take care everyone.

Sandie x


Ana,

Unfortunately this dumb illness has no pre-requisites.. That includes age.. You can get it at any age. Its terrible for such a young thing to be experiencing something like this... I cant even imagine what it would be like to go through it at that age. I think after 7 months of having it.. Has it gotten any better for her.... Does she remember when it was worse? If so, then it is however slowly, going away. I hope she feels better soon!!!


Hello everyone We just returned from camping. I'm happy to say, it went well. We walked, played cards and relaxed. Maria, I find walking, gaze stabilzation exercises and turning exercises actually make me feel less dizzy. Unfortunately,the dizziness does come back though but it seems to be improving. I'm willing to try anything to get better. Hang in there everyone. Lot


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I went to see the ENT yesterday. He told me to keep walking and to increase the distance when I'm able. Also, to keep doing the gaze stabilzation exercises and turning exercises. He said the worst thing to do is nothing but sitting around or laying around. The best thing to do is keep moving so the brain can compensate for this. It is important not to push myself too hard though. I'm happy to say I'm on the right track and I'm going to keep trying until I'm back to 100%. I would highly recommend these exercises to help speed recovery. It takes time and diligence though. It won't happen immediately. Take care, Lot


Would someone please explain the Gaze Stabilization Exercises?


Hi all,

Glad to hear some of you are feeling better, but sorry to hear others are having problems. Ana, I do hope that your daughter is feeling somewhat better. My younger son, 16 at the time had something like your daughter is experiencing. At first they thought it was Meningitis,but it turned out to be a severe form of Labs.Went on for 6-7 months, and he missed a lot of school, but managed to make it through the year. But I found because he was young, the doctor jumped on it right away, and all the tests were done within a week.(Lot, like you, we live in Canada and you know how long it usually takes to see a specialist.) In his case they did a brain scan and found some inflammation in the inner rear. He had terrible symptoms, always dizzy and nauseated.Let us know how it is going.

Sandie, I do hope you are feeling better. I totally agree with you about allergies. It is all related. We are now having a heatwave, and I'm not feeling great. Thanks for asking about my trip.The drive was fine, but the second day I was there I had a relapse. Don't know what caused it, maybe the barometric pressure. So I stayed one day longer, and drove back when I was completely okay.

Lot, you seem to be doing well. What are gaze stabilisation exercises? Do you simply stare at something? I would like to try it. Sandie you do those too, don't you? Do you use a nasal spray? I find that helps a bit. I completely relate to the feeling at the back of your mind that it could pop up anytime, anywhere, unannounced. That's the scary part.It's fine if it happens at home. Maybe the fear is worse that the illness (condition, my doctor calls it).Don't know. Feels pretty bad when you have it, like the ground is shifting.

We're all in this together. Love to everybody,

Maria


Hello Eveyone Maria, the gaze stabilzation exercises are: To be carried out 4 times a day in a safe environment, in a standing position, with the target at arms length (I just use my finger). Each exercise should be carried out 20 times, at a speed that ensures the target remains in focus at all times. (I do 60 times of each at the moment) 1. Hold target in front of eyes and move up and down without moving head.

2. Hold target in front on eyes and move side to side without moving head.

3. Hold target in front of eyes and move towards and away from nose.

4. Hold target still in front of eyes and move head from side to side without moving target but maintaining gaze on target.

5. Hold target still in front of eyes and move head up and down without moving the target but maintaining gaze on the target.

6. Hold target still in front of eyes and move head by putting right ear on right shoulder then left ear on left shoulder without moving the target but maintaining gaze on target.

7. Toss a small ball from one hand to the other at eye level.

You are suppose to do this every day. There should be an improvement within a few weeks. I do these exercises while I walk around the house. I was feeling great last weekend (95% recovery). I was so happy. Only a few dizzy spells. I've had a little blip the past couple of days but I will continue with my exercises and lots of walking. I will forward the turning exercises I do also. In my handout it says the sooner you start all these exercises the faster and more complete will be the return to normal activity. I hope these help. Lot


Hello All Maria, here's the Gaze Stabilzation exercies I do.

To be carried out 4 times a day in a safe environment, in a standing position, with the target at arms length. ( I use my finger)

Each exercise should be carried out 20 times, at a speed that ensures the target remains in focus at all times.

1. Hold target in front of eyes and move from side to side without moving head.

2. Hold target in front of eyes and move up and down without moving head.

3. Hold target in front of eyes and move toward and away from nose.

4. Hold target still in front of eyes and move head from side to side, without moving the target but maintain gaze on target.

5. Hold target still in front of eyes and move head up and down, without moving the target but maintaining gaze on the target.

6. Toss a small ball from one hand to the other at eye level.

I started off doing these standing and now I do them while I walk around the house.

The turning exercises are:

1. Sit down, then stand and turn around and sit down again. Repeat in the opposite direction.

2. While standing, turn around on the spot and then in the opposite direction. First with eyes open then closed.

3. While standing, bend forwards from the waist and then straighten.

4. While standing, bend forwards from the waist and then turn the upper body to look behind you, both directions.

Each of these exercies should be done 5 times and for 4 times a day.

Hope these help. Lot


Hi Lot and everyone;

Thank you for forwarding those exercises Lot. I have started doing them, although I am not as good as you. Once a day is all I can muster so far. I will have to try harder. Hope everyone is doing better, I feel a cold coming so the dizzies won't be far behind.

Everyone take care, and Lot thanks again.

Maria


Hi Maria If you're having a tough time with the Gaze stabilzation exercises while you're standing you can do them while you're sitting for awhile first. Then try standing and then do them while you're walking. One step at a time. Don't push yourself to hard. Just do whatever you're capable of. It'll get easier as time passes. Just don't give up. Have a great day! Lot


Hi Everyone!

Firstly I think you are all amazing. Thanks to all you beautiful dizzy people. You came to my rescue when I thought I was going off my rocker!! I was diagnosed with labyrinthitis 14 weeks ago. Results from the ENT said I am lucky enough not to have any inner ear damage. All my symptoms of labs have pretty much disappeared except I have been left with nystagmus. This has been slowly improving for 3 weeks now. (worse in the morning and better in the evening) Does anyone know if this will be a permanent thing? Or is it just one of the last things to go? One other question. Has anyone else suffered from different pupil sizes? Sometimes I have one large one and one like a polka dot! (Have MRI on the 21st of this month)

Love to you all

Scottish Katie XXX


Hi everybody:

Sounds like some of you are improving. Lot, thank you again for the exercises. I am not as faithful as you,but I try. I've been going on my mini trampoline and just moving around on it,while staring at a fixed point.That seems to help.But my labs is always there a little bit. Katie,welcome to the dizzies forum. You seem to be improving.What is Nystagmus? You seem to have a good ENT. Mine didn't know if there would be permanent damage. Hope you are all enjoying the summer, dizzy or not.

love xxx Maria


Hi all... I've been terribly busy with work, and haven't posted in a while. I'm sorry about that.

I wanted to chime in with what Nancy said a while back. You can absolutely have migraines without having headache pain. Vestibular migraines often do not present any pain. Sometimes you might feel pressure, like sinus pressure, behind your eyes or around your face, but it isn't the true headache pain that most people associate with migraines. Other symptoms include dizziness, lightheadedness, tinnitus, pressure in your ear, trouble focusing, seeing wavy lines, and many more symptoms that are similar to Labs. I'm currently being treated for Migraine Associated Vertigo. It is fairly new, and many doctors do not know about it or understand it. A friend of mine from another board was also diagnosed with MAV from going to her eye appointment. She went to a top eye clinic here in Utah, and the neuro opthamologist diagnosed her as having MAV. I suggest everyone do some research on MAV if you have been suffering for longer than 8 weeks as well. It won't be the answer for everyone, of course, but it may be the answer for one or two of you out there.

I've had a good stretch of feeling about 85% for the past two months. Quite astounding for having been ill for almost a year. Seems to me that the things that have worked best have been eating a low sodium, caffeine free healthy diet, taking vitamins including gingko, grapefruit seed extract, and calcium, and walking walking walking! I'm always pushing myself to exercise and keep moving. The worse I feel, the more I move!

If anyone has any questions about MAV, please let me know. Hope you all find relief from this monster very very very soon.

Skye


Hi again everyone!

Maria, thanks for the welcome!

You can see really extreme examples of nystagmus on youtube. I'm pleased to say mine is no where near as bad. It's when the eyes shake either up and down or side to side. I think it was there for weeks without me knowing. It's a total pain in the a** because I still can't drive! The ENT guy decided there was no damage because my hearing on both sides is back to normal ( no tinnitus etc). I don't think it was ever that bad in the first place. The NHS in this country can be so slow at times, I think I'll get better myself before I see the right specialist!

I'm sorry you've had to put up with this for such a long time Maria. It totally stinks! Lets face it, we all needed this like we needed a hole in the head! Fight like hell honey and try and laugh every day.

Something that might be worth a shot. Well it's helped me anyway. I've been making myself dizzy on purpose. Spinning around on the spot and dancing as much as I can stand. Maybe it is because it gets those happy chemicals in the brain going. I don't know. I've been walking like there's no tommorrow and I find it easy now. Not like at first when the ground wasn't where I thought it was and I needed someone to hold on to!

How much of this disgusting affliction can be beaten with positive thought will vary from person to person. But it seems to be working for me.

Skye, interesting comment about MAV. Think I'll go and do some more reading. See if it might apply to me. I agree with you totally as far as the walking is concerned. It's helped me no end. Hope you are doing well.

I'll leave you all with a ridiculously British quote.

Never, Never, Never Quit. Winston Churchill

Lots of love to everyone

Katiexxxxxx


Hi everyone,

Hope you are all doing ok. I've just been on my holidays to the highlands of Scotland (UK) and have had to come home early because the weather has not been good. We had originally booked and paid for three weeks but have come home a week early and cut our losses. It is always very much an adventure holiday for the kids but everything was getting cancelled left right and centre beacause of the rain. Temperatures were low, sometimes as low as 10 degrees centigrade on some days!

Anyway, it is a six hour journey from where I live and I had been feeling a lot better (after suffering the mumps) a week or so before the holiday. The journey was OK but on arriving and getting out of the car I started to feel really nauseous and dizzy. We went into a restaurant and before we even ordered we had to leave as I was feeling so bad. Everything went, balance, dizziness, sickness. Next day I was a lot better and just had minor dizzines for the rest of the holiday, which is manageable! The journey home was yukky though. We made a rush decision to leave that morning as we had had enough and I was packed and out of there very quickly! I think the shock to the system was partly to blame but I felt so sick and dizzy all the way home. To top it all my 11 year old daugther vomited quite a few times in the car. Yuk!

Maria, I do do the gaze stability exercises the same as listed above and feel that they do help a lot. A few months back I wasn't doing them and started to suffer a feeling that my eyes weren't quite following what I was looking at, they seemed to be a micro second behind, if that makes sense! However, on restarting the exercises I stopped getting that feeling. And, yes I also now use a nasal spray which is just Beconase used for hay fever. It has stopped me snoring but I'm not sure if it helps with the dizziness!

So, after getting the mumps and suffering this latest relapse of dizziness and balance problems I am back to feeling mild dizziness a lot of the time. I have another week of holiday and then will try and get back to work next week. Oh, I so hate this horrible condition - all I want to do is the simple things in life - go to work, and enjoy life! When is it ever going to end.

Take care

Love Sandie x


Hi everybody, Listen everyone. Between gaze stabilization exercises 4 times a day, walking our heads off, no caffeine, no booze, hundreds of dollars worth of vitamins, are we allowed to have some kind of a life? I still have a cup of coffee(half decaf,don't get exited) to wake me up in the morning and I still have the odd glass of wine. So there! Seriously, Sandie I'm glad you had a nice holiday,eventhough you had to cut it short. I think the damp Scottish weather probably aggravated your VL. You been fighting this for a long time. I thought you were from Utah? We haven't heard from Anna from Oklahoma for a while. Hope she is okay and that she had a wonderful time in Hawaii.

Skye, you mentioned MAV? how are you being treated for it?Apparently the doctor told me they treat vertigo with Serc. Is that what you are taking? Katie, you have a very good attitude. You will probably get better faster.Don't give up! Another Churchill quote "We will fight in the trenches, we will NEVER surrender!!!

Love to you all, you have all become my friends. When I mention this condition to anyone else,they say "What! Still! Aren't you over it yet?"

Thank goodness for the internet, and especially for Richard Baker. Richard, you are the best! Maria xxx

[Thanks, Maria. It's nice to be appreciated sometimes - Rich]


Hey guys!

You all so right about the rubbish weather in Scotland. At least you don't have to live here! I'm in Argyll about 30 miles west of Glasgow and as for 10 degrees in August. It's 100% true! I seem to get a lot of headaches. It must be atmospheric pressure.

Maria, I'm exactly the same. Spent an absolute fortune on vitamins and buy half the fruit and vege shop on a regular basis. I still love my coffee and red wine and the cigarettes! I've decided that happiness is of paramount importance! As for other peoples remarks... If I'd been given £10 for every person that says "Have you still got that?" I wouldn't have to go back to work at the end of this!

Loving the quotes!

Cheers

Katiexxx


Hi Maria,

No I'm not from Utah, I am from the UK!! Are you UK too? Katie, I'm from Newcastle upon Tyne, not too far from you! What's this summer like eh, a complete washout for us in the UK!

I've just been for a walk with my daughter, appx 4 miles, absolutely drenched through because it rained all the way. Felt a bit dizzy as I do when I am beside roads, the traffic makes me feel that way, but not too bad.

Maria, serc didn't work for me and for many others who take it. Doesn't seem to make much difference.

Sandie x

P.S Rich Baker, I too, REALLY appreciate what you do for us and in the early days this site was a lifeline for me. You help so many people.


Hi Sandie:

No I'm not from U.K. I live in Toronto. We have been getting a very wet summer too which plays havoc with Labs,as you know. I just wanted to mention something I read about getting a cold when you have Labs, since you mentioned you get them more often.I am the same,so I tried to find out why. Apparently, when you are recovering from Labs, you go through a process called compensation where the brain tries to adjust to different signals. A cold interferes with this compensation, so you feel you are back to square one. It takes a few days after the cold is over for the brain to take up where it left off,sometimes up to a week. The article went on to emphasize the need to wash our hands often. As often as you can.Stops the germs, I guess. Another thing the article mentioned was spatial disorientation.It gave an example of supermarket isles. The reason one can feel dizzy or strange is that the brain is unable to calculate the distance between the aisles.All these things help,if the darned thing would just GO AWAY altogether it would help even more!

Just thought I'd mention these things. Hope everyone is having a better week.

Maria xxx


Hi Maria

Thank for your post. However, I haven't suffered from many colds over the three plus years that I have had this thing and have even had a cold which did not affect me at all. I did say that I suffer a lot more from allergies though.

You are totally right about the compensation process and lots of things can make us decompensate. Have you had a look in the stickies on the inner ear disorder board? There is some excellent stuff on there.

I also find now that I have problems now with noise and the 'atmosphere' in certain places. This can make me off balance and dizzy.

Oh, and I love the spatial disorientation bit! One of my favourite things when I am having a relapse is walking into door frames! (joking, of course, it is a nightmare) - I just can't seem to gauge the gap, or maybe I just think I am slimmer than I really am!!!

Well, I think we have had the worst summer ever. I am sitting here now in the middle of a thunder storm and it is absolutely raining cats and dogs! I had no garden last year as we had just moved into this house and it was a mess. This year however, it has been landscaped and I have planted loads of lovely plants which do look beautiful but I can't sit out there and enjoy them. I just look longingly out of the window! Roll on next summer, it can't possibly be as bad as this one!

Take care and I hope you get some sunshine.

Sandie x


Hi everyone,

I've enjoyed reading your posts. I have been sick with lab since the end of May. I'm 29 and this has been the worst summer of my life. I can be fine one minute and really sick the next. I'm over most of the nausea/vomiting/dizzyness, but just feel hazy a lot of the time, get headaches due to neck pain (going for massages to try to help), tired, and my muscles in my legs and arms feel shaky and weak. Does anyone else have this? I didn't have a problem before, but sugar in large amounts seems to bother me as well. Any comments on the probability of this? Thanks.

Dawn


Hi All,

Sandie... Summer eh?! What Summer! It has been a total shocker. Although the sun was out today. Would you believe it?! :)

Had my MRI yesterday. That was interesting. The machine made strange noises. Sounded like the so-called music that comes out of boyracer cars! I 'm not too worried about the results. I'm pretty certain my heads full of sawdust and not much else!

Started drinking hot water with honey, sugar and loads of grated ginger in it. Haven't had a headache since. Vision is still slowly improving so can't complain!

Off to Blair Atholl this weekend to watch the horse trials. So lots of fresh air for me!

Hope everyone is doing well.

Cheers

Katiexxx


Hey everyone,

I am also battling the dizzy bug. I have found with making a few small changes in your diet, mindset etc can really go along way. Just knowing so many other people are going through the same daily struggles keeps your mind from going completely off course and so i really appreciate everyone's comments.

I recently downloaded a report that had some helpful tips, would be interested to know if anyone else has bought it. Click here, some people might find it useful.

Thanks


Hi again,

Dawn... I got labs in May and I'm 29 next month and this has also been the worst summer of my life!

I 've struggled too with slightly weakened arms and legs. Sometimes if you are sitting still you feel as if you are trembling. Again I'm left with slightly hazy vision, have headaches and neck pain (the ginger drink I mentioned before is helping )And I have regular head massages! Also helps.

I think if you are anything like me you will not have done the same amount of exercise you would have normally? Try and do more physical stuff. I'm finding this works, you might be the same. I found that I'm not as weak and weedy as I thought!

Hope this is useful!

James... Welcome to you too! I agree with what you are saying. I believe labs is self-feeding. Not giving it too much air play (once you are through the worst of it anyway) is helpful. I have always been a practical no nonsense sort of person. I found labs was wrecking my head. making me look in all the time and putting my own life on hold. So many times my thought patterns became dark and destructive. I felt as if I was going crazy. You're not! It's all part of it. Let's face it. If it was easy there would be no need for this website. You really have to believe in your own strength, try and do stuff for other people. Telling myself other people need me has given me the motivation to fight like hell.

I take ginkyo Biloba and as much fruit and vege as poss. Everyone your're fabulous! Dizzy or not :)

Katiexxx


Hi all: Well, the summer has been a write-off for most of us. We had more rain than anything else, at least that's what it felt like. Maybe the fall will be better. Haven't had to water the lawn once and my grass looks great!

Dawn and James,welcome to the dizzies' forum. We all help each other. Dawn, you are absolutely right about this virus. It wrecks your life. I have had mine for 10 months and counting. And you are right about the ups and downs. Up one day,down the next. Enough to drive one insane. My labs was much better in the spring and early summer,but this month has been pretty bad. It's been very humid here,so maybe that's it. Lots of thunderstorms. Try to live as normal life as possible (not always possible). Stick to a healthy diet, go for walks. I find the fear factor is the worst, as well as the loss of control.This morning in church, I thought I was going to keel over during the first hymn. It was darned hot in there, so that probably didn't help.Temperature and weather are a huge factor, I find. Try and stay positive, although that's easier said than done.

Everyone,do take care.There are better days ahead.

Lovexxx Maria


Hi all, and welcome to James and Dawn. I've been floating around these boards for over three years now so if you have any questions, please ask!

I went back to work on Thursday and boy was I tired at the end of the day. I work in a garden centre and we had a a massive delivery of bulbs and that is very heavy work. I work three days a week but had to work yesterday because of the bank holiday so that was 4 days in a row. I had a really bad day yesterday with my balance, but I managed to stay til the end of the day. It was absolutely red hot in there as the building I work in has a glass roof with no air conditioning so yes the heat affects me also. Today, I am still off balance and keep feeling like I am going to keel over but not as bad as yesterday. I think being so tired has also affected me.

James if you do get that book please let us know what is in it.

Katie, I hope you had a good time at the horse trials! I have been to many places in Scotland as my hubby is Scottish and will probably move up there in a few years, probably towards the Fort William side.

Take care everyone.

Sandie x


Hi again,

Thanks for the notes Katie, Maria, and Sandie.

I will try and exercise more though the thought is somewhat frightening! I'll see what I can do. Katie, you're right, I haven't been doing anything at all for three months! The good thing is I haven't gained any weight as I haven't been able to eat a lot either. That's positive!

The fear is unreal. I take the train every morning to work and hold my breath for the whole 10-15 minute ride as I'm scared I'm going to be ill. Or I'm scared I'm going to relapse when I'm shopping, at work, etc.

Nausea hit bad last night and I had to take one of my pills that the doctor prescribed. I hadn't taken one for a couple weeks.

I'm going on a nearly two-month vacation at the end of October so I'm hoping with all my heart I'll be stabilized by then because I'm going no matter what. Fingers crossed!

Dawn


Hello everyone!

ive had this thing for around 2 and a half months now...havent been able to work, play football and uni which starts in a month looks unlikely at my current rate of improvement.

Last week i thought i was finally coming out of Labs, so i decided to go football training, i felt good...the next day i felt as tho i was back to square one. My legs felt like jelly, i felt tired fatigued dizzy again and jus crappy.

This Labs is really strange. Whats worse is u cant see inside ur head to see if your middle ears making any improvements. A question...does a MRI scan show if theres is actually any inflammation of the inner ear? and also how can u find out if the crystals are out of place??

Im like every1 else...theres gud times and bad times. My doc told me theres around 0.0001 chance of permanent damage to the middle ear for sm1 whose has labs. He also said theres no such thing as compensation??? There are so many different views and theories..sometimes i think its better just to pay no attention to it and just concentrate on urself and judge ur recovary on a monthly basis not a daily one or weekly one.

I have improved..I am driving locally, i can manage to walk to the grocers down the road or take a walk in the park and do light weights compared to last month so i remain optimistic.

I have found tht smoking helps...well i pray tht every1 makes a speedy recovary from this and rememebr neva give up hope no matter how bad things get!


Hi All!

Kam. Welcome to the dizzy forum! I'm not the best person to advise you on crystals or compensation. I'll leave that to someone who knows more than me. As for the MRI...Other than the brain it can also be used for ligaments, muscles, the heart and many other things. I'm pretty certain it won't show the area in the inner ear known as the labyrinth. It seems to be one of the few structures within the body that's more or less impossible to see. It's just procedure when you've had labs for long time - I'm waiting for my results at the moment. My friend Elenor is a GP and she said they call you back in like bolt lightening if there is anything untoward going on. So I'm not too worried!

If you can, go ahead with your uni plans as normal. It's going to be tough for you. But I think you'll find your recovery will be quicker. Having other things to focus on will help you. Most of us have found this is an area of medicine a lot of doctors don't know a great deal about, and they all seem to have a different opinion about labs. The first doctor I saw assured me it would only last 3 weeks! I'm now on week 16! so, says it all really.

Dawn. I've lost 10lbs since I've had labs. I look fantastic but feel like c**p! Can't win them all! I'll give you a laugh.. My mate was hungover and on the Glasgow underground. She fell over and grabbed some poor, unsuspecting guy in the privates! So lets face it. If you do throw up on the train. It could be worse!

Maria and Sandie. Hope you girls are doing ok? Oh, and Sandie horse trials were fab. And I like Fort William, it's a really pretty part of the country :)

Cheers

Katiexxx


Hi all: Kam,welcome to the dizzies forum. I hope yours won't last very long. Some people get over it fairly quickly, so try and stay positive. I have had this condition for 10 months,and have done quite of bit of reading. My #2 son had this problem when he was 16 and the CAT scan did show it was an inflammation of the inner ear. It pretty well cleared up after 3 months. The thing with the crystals is different. Some crystals (calcium) break away from some sac that has ruptured and one or more can make their way into the labyrinth which deals with equilibrium. It can get lodged and can cause problems.There is a thing called the Epley maneuver where they rotate you upside down and around to try and dislodge it. Apparently you can feel like heck for a week, but it is fairly successful. The third thing that can cause Labs is an over production of fluid called endolymphatic hydrops.The doctor thinks that's my problem because I don't have Benign Positional Vertigo. Mostly a foggy,spaced out feeling.And dizzy, but no problem with sudden movements. And the small amount of Serc that I take helps a bit.Apparently diuretics can help, but why would the doctor suggest something so logical? As for being no such thing as compensation, I think your doctor is wrong.Everything that I have read suggest otherwise. I am coming out of a relapse (at least I thought it was Labs, but now am not sure.) There is a nasty virus going around resulting from some tainted food that has since been taken off the shelves and from which some people have died. But you can get a mild case with nausea and dizziness.And I'm thinking that's what I had. Face it, not everything is Labs. Feeling better now, not 100% (like that's ever going to happen!)

Scottish Katie, I always know I'm going to have a good laugh when I see your posts. You have such a funny way of putting things. A real comedian. Sorry you are not feeling great, but your optimism will help you get over this relapse sooner.

Sandie,are you feeling somewhat better?

We are getting nice weather at last.

Hugs to you all

xxx Maria


Hi, everyone!!! I love you, folks!

I had a wonderful time on Big Island (Hawaii). I have not been on this site for a while, sorry. But I really miss you, dizzy friends. I have been busy with thinking WHAT TO DO WITH MY life - I lost my great job (engineer and researcher), I do NOT like to stay at home, my kids are grown ups and they both live in Boston - way too far from our small town in Oklahoma. I am still not strong enough to start looking for a half or full time job. Maybe, I will take English composition classes at our university starting next semester - it will improve my English (my mother tongue is Russian). Maria, Sandie and others - hope you are doing more or less OK this nasty, rainy, moldy summer. Rich Baker - thank you for the site - like someone here said - Rich IS A REAL GENTLELMAN.

Anna for Oklahoma


Hey thanks for the replies guys!

Well Katie hopefully i wnt need to be on here for 2 long...So your in ur 16th week are u feeling betta than u did in ur 10th week or has it plateaud? cause thts the worrying thing...i mean if u break ur leg or wateva at least u KNO its gna get betta and u can physically c ur progress.

Yeh i think i will go ahead with uni, i cant waste a whole yr and let this thing get to me but i wnt be able to commute cause i think itll be 2 dangerous driving for a whole hr!

Maria...hope u are well..well as well as u can be with this...uve had this for 10 months! how are u holding out now tho compared to say 5 months ago? are u able to work?

Well i hope its not the crystals...tht jus seems complex..but theres no harm in doin some roly poleys or headstands is ther? lol...hmmm can u not get the fluid removed? And what exactly is a relapse? as in how can u hope to make a full recovary if u keep having relapses and hv to wait so long again?...Maria dnt say that! ul get betta! its only been 10 months (",).

Also, i just wanted to know if this is normal in the whole road to recovary thing...ok im not falling to my right anymore and my eyes are more less normal, no blurry vision. But i still feel an imbalance in my head and weird pressures sometimes...which i think are the causes behind my tiredness and fatigue. But i do get really tired and fatigued and my head feels heavy. So i guess now im jus having to deal with my head feeling weird, the fatigue and some unsteadiness when i walk or turn...is this all normal?? All help much appreciated!

Take it ez everyone!


Me again

Maria.. I am quite astonished they were able to detect the inflamation in your sons ear. Half the battle would be won if we were all given the same info! I have to wait until the 24th of sep for my results. I have almost no symptoms at all now. Just my vision is blurry and squiggles about the place. I'm glad you find the posts amusing. All this doom and gloom should be put on the back-burner in favour of laughter!

Kam.. I am much better in week 16 than I was on week 10. It does improve but it's so slow! I find the less I think about it the better I do. saying that..It's a tremendous ask to not think about it! after all it's always there laughing at you. What you said about fatigue, heavy head, feeling weird etc. I've had the lot. But it does get better :)

Dawn...I've asked my GP to sign me back on for work again. I'm not driving either so we can all throw up on the train together!

Hope everyone is doing well!

Katiexxx


Hi everyone;

Anna,welcome back! Some of us wondered if you were going to stay in Hawaii for good.We've missed you! As to what you are going to do with your life. I'm in the same boat.Last year in the spring I was downsized, and lost my job.Then in the fall I got Labs. Forget working. I have had two job offers but at this point, I feel I can't make the commitment. But I'm in 2 book clubs, take piano lessons,sing in a choir,and next week am starting aquafit classes once a week.At 60, I don't feel like a full-time job anyway, but even part-time at the moment is out for me.My sons are grown up,one is living at home.So there are things for you.What about something with the Engineers society, something related to your work. Just a thought.Great idea about English classes. They would probably be quite interesting, Kam, it sounds as though you are doing better.As for doing headstands,good luck. It might make things worse. You have to have a therapist turn you around and that's if you have the crystals.If you have the fluid,you can't do anything. Sometimes the doctor will prescribe a diuretic. Anna,was it you who said you were taking one and it was helping? Kam, I feel exactly the same as you.Heavy headed,and my eyes get sore.But the last 2weeks I had a bug and felt awful. It seems to have more or less cleared up,but like you I still have pressure. How will you get to uni if you can't commute?

Sandie,Katie how are things? What happened to Lot? She was religiously doing her gaze stabilisation exercises and walking all over the place, so maybe was able to kick it. (I'd like to kick mine and I won't tell you where!!!)

We are finally having a decent summer, after a summer of nothing but rain.

Lots of hugs everyone,

Maria


Hi everyone,

I hope you had a great weekend. Mine was good aside from severe nausea for a few hours on Sunday night (9:00 PM -12:00 AM). I don't know about everyone else, but my nausea symptoms always happen at night and often wake me up and come out of nowhere. I had to take Maxerin (spelled wrong?) which seemed to help. Anna, how was flying? I'm going to be flying a lot on an upcoming vacation (October 30) and I'm kind of scared. I'll be at the five month mark by then and hopefully better than I am now.

I'm at work, but going to have some mint tea now. It always helps!

Dawn


Hi Everyone, I found this site a couple of days ago while checking out the benifits of Ginkgo for dizziness!!! Reading it is becoming a life line and I feel better knowing that I'm not going mad (I think!!) and not the only one!! I was diagnosed with VL last december and suffered the usual hideous virtigo, nausia, given stemitil, blah blah etc that it starts with and was very much out of action for a month. I then went back to work and within about 2 weeks was bad again. That episode lasted about another 6 weeks and ended up having the Epley and selmont procedures, which made me worse. I was so fed up by this stage that I tried acupuncture which I think helped, certainly did with energy levels. I went back to work which was part time and had a more sympathetic working pattern. ( I'm a nurse who works 12 hour shift in a rota of day and nights..not good for the triedness this condition infficts on you!!!) This seemed ok although if I got tired out or even tried an egg cup full if wine I'd be writted off for a day or two again!!!! We were also planning out wedding in may, and whilst it was fab the lab symptoms would always remind me every so often it was still there!! After a honeymoon, which i felt fine on ( only had one episode of virtigo) thigs got bad again in june and i was so upset as had thought it was all behind me. I was loving my job and there were new opportunities coming my way which this wretched condition seems to have put an end to for now!! (At the mo not able to work ..again!) I would go to work feeling drunk and sick and then get the hot flushes and have the spins!!! Some days would be fine, but others auful. I'v been pretty distressed by this episode, in a way more than the initial one as it is obviously not the '2-3 weeks and you'll be better' that i was initally told!! My syptoms include hot flushes followed by virtigo, which may be transient or last a few days, slightly blurred vision, giddiness, cotton wool head, eveything bounching when i walk, and this feeling that if i put my head back it could role off my shoulders... they all sound mad!! I know.. and the worse thing is trying to explain it to someone who has not had it or trying to look and act normally when you feel hidious and unsafe!!! I think I'v now had about 3 months off work, 16 drs appointments, a MRI head scan, reflexology, acupuncuture, epley and semont, spent a fortune on alternative therapies and private drs appointments and missed out on loads of family and friends get togethers , christenings etc and am now in month nine!!!Uhh!!! I'm now trying a diet change.. so if anyone has any top tips I'm up for it!!! Sorry to vent... its so nice to vent to people who understand and I so sorry you guys are going through it, its horrible. Still, I keep holding on to the fact that its not life threatening and there it hope!!!( so they tell me!!!) I'm so lucky to have such a supportive husband an amazing parents who help and understand how ever mad i must sound!!!I'm giving the Ginkgo a bash and have some more acupuncture today. I am feeling better this week and having some more chippper days ! Thanks you guys for sharing yr experiances and helpful tips, Keep Positive!!!

Thanks for this Rich, Annabel, Oxford, England


Hello everyone. We just returned from a holiday. We went on an Alaska Cruise with our family. My father in law turned 80 and the specialist told me it would be fine for me to go. It was amazing...I felt normal on a moving ship and have been feeling quite a bit better since. Perhaps the movement helped my brain to compensate for the inflamation in my vestibular nerve. I'm still keeping busy with the gaze stabilzation exercises, turning exercises and walking. Another exercise is to sit on the side of your bed, turn your head looking towards your left shoulder, lay down on your right side. Hold for 30 seconds, repeat on the other side. Do both sides 10 times. It seems to help. My husband and I have been playing ping pong also, which gets me a bit dizzy but seems to be helping. We've also been doing some dancing now and then around the house. It's our 25th Anniversay next month so we're going to Hawaii to celebrate. Just what the Doctor ordered. Walking on a beach, and soaking up the sun. It's all gotta help. Anyway, keep plugging along, doing whatever you have to do on the road to recovery. It's one small step at a time but we're going to make it. It's nice to know we're not alone in this. Take Care, Love Lot


Hello Everyone! This site is a Godsend! I was diagnosed with labyrinthitis about six months ago. It started with dizziness and extreme imbalance. I did not have the extreme vertigo that some of you have mentioned. My family doctor recommended CT Scan, blood tests and the works and then finally recommended me to an ENT. I had the VNG tets three weeks ago and so far, I am still suffering with dizziness (not too bad), full, heavy feeling in my head and imbalance. It gets worst when I enter an air conditioned room. Anyone notice this? Also, I am worst with bad weather and change in air pressure. When will this end? I am back at work but not able to concentrate with my heavy head and fatigue. How can I cope?


Hi all

Welcome to dizzy forum Annabel! Congratulations on getting married!

You mentioned you were looking for some diet tips. I was a chef for 9 years so here goes... I've found eating as much fruit,nuts and vege as you can is a definate help. Especially berries of all types and anything high in vitamin C. I've noticed a lot of us on this site are girls so keeping up on the B vits as well as iron packed foods is a must( Green vege and apricots in my case!) Oily fish that is rich in omega 3 ie; salmon and mackeral. This is proven to aid memory and helps the skin too.( may as well look good!) Sushi or anything with seaweed in it. I grate fresh ginger, add manuka honey and let it soak in some hot water. (sort of tea drink) This really helps with my cottonwool head symptons and neck ache.

Any multi-vitamins you buy are not going to be as good as the real thing. However, stick with the ginkyo. I think that stuff is fab. Oh, and eat bananas they are the number 1 happy food!

Welcome to you too Jacquie! In Scotland we have no need for air conditioning! so, not sure about that one :) But I have to say this summer has been a total shocker and I'm certain it's not helping matters. Especially with headaches, fatigue and neck pain. As for coping. It's so hard having labs because you look fine people think you are fine. I think most of us just make it up as we go along! Try and plan ahead. So you have some nice things to look forward to. I ordered a stunning pair of shoes from the irregular choice website. I'm sure my vision improved when they arrived! :)

Maria... doing pretty well thanks. Just the sight isn't quite there yet.

Cheers for now

Katiexxx


Hi all:

Lot, you certainly sound like you are on the road to recovery. All the visualisations and those walks must have speeded up your recovery. A cruise in Alaska, without getting dizzy! Amazing! Hawaii will be great. I know you will enjoy it. Bon voyage! Jacquie, we are all with you on this. We all seem to react to weather changes and air pressure. Supermarkets bother me. I've had this for 10 months and although it's better, it's still there, and I have the same symptoms as you, heavy head and imbalance. It's hard to cope when you are feeling like this, let alone a job. You sound like you are slowly improving. things don't happen fast with this thing. Two steps forward and one step backward, is what I find. It will get better. It just won't happen tomorrow. Keep your chin up.

Katie, no amusing stories this week? Kam, how are the headstands and roley-polies doing? Any crystals come flying out of your ear?

Take care everyone, remember one day at a time!

Lots of hugs,

Maria


Hi everyone,

Hope you are all feeling better.

I have been back to work for three weeks now and I feel really good, just the odd dizzy spell but no imbalance!! Yippee, long may it last. I think getting the mumps must have shocked my system into recovery, or at least partial recovery.

When I was at work the other day one of our customers happened to mention that a couple of years ago she had all the dizziness, imbalance etc. A lot of the symptoms she described were exactly tthe same as the ones I have suffered. She had her ferritin levels checked which is some sort of iron reserve. When I told her that my iron levels were perfect as I had had them checked two months ago, she said that at that time hers were too but that when checked for her ferratin levels they were very low. She was given iron which is only available here on prescription and has not had a dizzy spell or any imbalance since. Food for thought, I am going to my GP next week to get mine checked. If I do find that this applies to me also I will screeeeeeeeeam, to think that I might have suffered for years because of something as simple as that. Fingers crossed it is!

Anyway, was just popping in to see how you are all doing and hope you all continue to recover.

Sandie x


Ok Maria

You wanted a funny story so here I go!...

My mother's friend Fiona aged 56(ish) Has a farm not far from where we live in Argyll. Next to her place is a small cottage which housed her only neighbours for miles, who were new in the area and had been there only a few weeks.

The new neighbours.... as well as being grumpy and particulary anti-social at best. Happened to bring with them a rather fat,white rabbit which they kept in a hutch/run in the garden. Fiona said her collie dog was rather taken with it from the beginning.

Then the SH*T starts to hit the fan. Fiona's collie one afternoon comes bounding into the kitchen, looking rather pleased with himself. Complete with not so white, dead rabbit in mouth.

(Fiona says at this point she doesn't know what possessed her to do what she did next!) - I think she just panicked. She decided, rather than face the neighbours, she would shampoo and blow-dry the bunny! and pop it back in it's hutch to make it look like her dog had nothing to do with it's untimely passing!

So after bunny had his post death make-over she snuck into the neighbour's garden and put him back in the hutch! Convinced it was mission accomplished. She thought she was off the hook.

Oh dear.... First thing the following morning. Door bell goes... One extremely angry neighbour at the door with dead bunny in hand. "Is this some kind of a sick joke?" she screamed. Fiona said something along the lines of "eh, erm ... erm...erm"

Anyway it turned out that the rabbit had died of old age! And the neighbours had just burried it in their garden! Fiona's dog had only dug it up! You can imagine their shock when they found it all clean and fluffy and back in it's hutch!

They never spoke to her again after that, and they have now moved away!

The moral of the story can only be.... Don't shampoo and blow-dry your neighbour's dead rabbit if you want a good relationship with them.

Katiexxx


Hey man, so sorry you had to go through this - and everyone else going through it too! Has anyone looked at the drugs they were taking when their incidents occured? I was diagnosed first with inner ear equilibirum inflammation, then labyrinthitis and ended up going to Mayo Clinic and found out I have bilateral unequal vesibular dysfunction presenting with oscillopsia...meaning, I have no balance at all in the right side and about half of my balance remaining in the left side and my eyes bounce. I was told by most of the doctors I saw...aw, go home, you'll be fine in 6 months or a year...it's been over a year and a half now, still not fine. Never will be. I was on a cocktail of Nexium, black cohosh and aspirin at the time. When I first became sick...my doctor at the time thought it was a bacterial infection and had me take augmentin. (Prior to this incident, I had had a liver panel done and it was shown that my liver enzymes were way above normal, so I wasn't metabolizing anything well.) After starting the augmentin, the oscillopsia became very much worse and I was sick along with it. Start checking everyone!!! Sometimes when people get sick, it's because of other people's errors! Anyways, so sorry for everyone! Tricia


Hi all: Katie, that story was hilarious. I laughed and laughed. Good thing too, because this thing got me down again. Woke up feeling like c**p. Well, you know the symptoms, heavy-headed, dizzy, sore eyes etc. The usual. Now going on a year. I feel like it's taken over my life. It's hard not to think about it, when you feel the ground shifting. What an illness! I hate it!!! My attitude today really sucks!!!

So you see Jaquie, you are not alone. It's pouring buckets here, so maybe that has something to do with it, but what doesn't have something to do with it, that's what I would like to know! Sorry, guys, but I needed to vent.

Sandie, I was so happy to hear that you are feeling so much better. That's great news! You have been suffering for so long! I didn't know that iron or lack of could be a factor. I always feel that my sinuses are sore when the THING acts up. Anyone try a diuretic?

Katie, you sound like you are better too. Maybe you could send some of that positive attitude across the Atlantic. I'm positive when I feel better, but when it returns I feel like I am back to square one.

Well guys, maybe I should have more of the Brits stiff upper lip. What do you think guys?

lots of love, everyone. Keep well. Ha!

Maria


Hi All.....

Well, here I am again... I just wanted to give you all an update. It's been about 10 months for me with this damn thing, whatever it is!!! One minute you feel like you're getting better, then BAM!! You're back to square one!! (or at least it feels that way.) It's hard to tell sometimes whether you're getting better or not, because it seems so gradual.

BUT...... I AM getting better. I'm back to work now... Off anti-depressants.. Not dizzy.. I CAN drive now.. I manage to get my ass round the supermarket..(just, lol) I've been out with friends and managed to have a tipple.. I'm finally starting to enjoy my life again!!

I'm still getting some symptoms, but they're not as debilitating as that damn dizziness.

Anyway.. Today my symptoms consist mainly of: a wee bit of nausea, sore throat, a tender swollen gland (left side) and pains in my throat (left side), I also keep getting aching under my armpits (I have no idea!!), aching behind my ears. Oh, and I forgot to mention.... I feel soooo tired, pretty much constantly.

Upside: The dizziness seems to have gone.... Downside: I'm still left with all this other s**t!! ha ha!!

Sandie.. I'm glad to read you're back at work!! Soooo happy 4 u xx Let us know what happens at the doc..

Megan... I've been reading more into your posts from the begining. I think my symptoms are very similar to yours now. Do you still get a sore throat/glands? Have any of you had aching under your armpits? Please get back to me..

luv & hugs,

Marita

P.S. If any of u want to talk if you're feeling down (caus I know how you feel). Please post a comment on my BEBO page. You can search for me either as: Marita Soto Varas or MSV26. Better still.. add me as a friend!! God knows we need all the friends we can get!! Especially ones who understand what we're going through....

xx all my love folks... thanks for being there x


Katie I just read your post!!! I f**kin laughed my ass off!!! :D:D:D

Brilliant!!

P.S.

I'm Scottish too... Aberdeen, born and bred..


Hi All,

Hope you are all feeling better.

Katie thankyou for the funny story!..and also for diet advise. Not sure how long the Ginkgo takes to kick in but feeling like i may be turing the corner!! Again!!! (..to scared to speak to soon as been here before!!) Jacquie, sorry to hear yr having a bad time of it...I don't think air conditioning makes my symptoms worse, although like the rest of us brits don't come across much of it..although I have found that strip lighting makes me worse, it seems to trigger the bouncing vision I get and the spins.

Sandie, you sound like yr on flying form...I'm really interested in what you found out about ferritin levels..keep us posted.

Take care all of you!!

Annabel, from a very wet england!!!


Sandie

I think you may have something! I HOPE SO! I believe after Labs we all seem to be suffering from similar symptons. There must be some connection. They also say there is a link between migraine associated vertigo and anaemia.

My iron count has often been low in the past( I know because I frequently tried to give blood and I would always fail the iron test) I don't eat meat and recently have lost quite a lot of weight from being stressed. Most doctors would never think to check ferratin levels. That would certainly explain why I'm tired and when I bend down to pick things up I feel so dizzy.

Also look at the list of names on this page alone. 95% of us are female! Put aside the fact women are terrible gossips. There could in fact be a link. I get the impression that guys- on average get over this faster ( what do you think?)

I know men can also have problems producing enough red blood cells. My flatmate Mick ended up in hospital for 2 weeks because of it. So in theory this is a definate line of enquiry for ALL of us! You can be iron deficient without being anaemic. And iron deficiently slows brain function in women.

Right.... I am off to the doctors! Thanks Sandie I certainly think it's worth finding out! I'll keep all my fingers and toes crossed for you!

Maria Glad you liked the story honey! The things people do never fail to amaze me. At least Maria you do have attitude! And it will be that attitude that will become your friend and way out of this. Take that energy and channel it. Having low ferritin levels does cause negative thought and mood swings. So it might be worth checking out.

If you eat meat I say it's steak for dinner

Hehe Katiexxxx


Hi all: Had acute symptoms for 11 months now, unable to work and it seems like it will never end, but it will. Found general medicine of no help. I have had to go the alternative path and have good relief. Accupuncture,reiki (which I do myself) flower essences (I have my own kit - they balance your emotions everyday), meditation and herbal medicines are what work for me. Overcast weather and being female, the monthly cycle are the biggest culprits for draining my energy. Can do everything I need to do - driving, shopping, walking etc as long as I keep it simple. Cant drive or indeed travel the freeways they are too fast for me, but no probelm with regular street driving and I don't travel too far as fatigue will take over. As I have an open mind I have done a great deal of research I keep coming up with all sorts of info. I have also looked at it from the emotional side and have done work to release negative emotions and feelings which of cause will make us ill. So I feel I have done quite a lot to help myself at this stage. It's very interesting that a Labyrinth is a spiritual path and itis means imflamation. Perhaps we are all on some sort of journey of enlightment. I know that Cronic Fatigued Sydrome has been recognised for some time as being an Ascension (englightment) illness and I question if this illness is also in that catergory. Worthwhile getting more info and doing some research over the net on Ascension and Enlightment illnesses, you will find many of the symptoms are the same. Also look at Kundalini illnesses, it's all the same sort of thing. Anyway I have taken a lot of personal responsibility with this and I'm very grateful for what I have learned so far. I see an intuitive Kinesiologist (that means she has psychic abilities - far superior health care)who has indicated that I am close to recovering from the acute stage of this illness, but need to be careful for another year also, otherwise I will go backwards. She also reminds me that it is a precious gift. I have learnt to do muscle testing (kinesiology) also, very easy and get the same answer. So we will see what happens and know the accuracy of this method. While this illness can completely change our lives, perhaps it is truely a gift. I know that the knowledge I have now, I never would have achieved if not for this illness and I am most certainly grateful for it. Lyn


Hellooo!

Its bin just over 3 months for me now, but this week has marked some real imrpovement and i think i might finally be getting over this! The dizziness and balance problem has almost completely disappeared and i feel as tho my energy levels are on the up. Although if i push myself i do feel slightly off balance and get tired still too quickly but that is partly probably due to my inactivity for the past 3 months!

Yesterday i managed to do some gardening and wash the car and felt normal and then go out in the evening and actually enjoy myself not having to think about feeling dizzy! and today i went for a 3-4 mile walks and although my legs started feeling like jelly i made it! :-p

However i am still wary and i kno this whole ordeal will trouble my mind until i am completely symptom free and have got my confidence back to 100% again.

Has anyone experianced sharp shooting pains travelling upwards in their head? Im still getting that and also some facial weakness and twitches??

Maria - Lol. Well hopefully i wont be needing to do any headstands now that i feel i am well on my to a full recovary.

Marita - i was getting exactly the same symptoms as you last week! Had a sore throat, swollen glands, nausea pain in and around the throat region, i have no idea why but i got a feeling it is connected to labs...what isnt!

Scottish Katie - Hmm interesting...Im a guy, but ive neva had any problems with my red blood cell count or an iron deficiency or anything else. Maybe it does have a link with recovary rate tho.

Lyn - For sure...almost every great...philosopher, scholar, thinker, leader, artist, composer etc. had something which troubled them either an ailment, illness, Psychological trauma, or had achieved a completely alternate mode of thought based on their experiances which then gave them a different platform or perspective to achieve such 'ascension'.

Take it ez everyone Kam


Back again!

well guys... glad you liked the story! I'll see if I can think of another for next week! hah!

Marita welcome to the dizzy forum. My dad's up in Aberdeen 5 days a week. Sandie and I were saying how sh** the summer has been this year. It just never happened, did it?

Well, My latest up-date... went to the eye specialist today. My eyes shake really badly and apparently after you've suffered from labs etc.. you can have something called " myokymia " (Although it can happen independantly through stress) I thought my eyes were shaking but in fact it's my eye-lids that are shaking! How odd is that? He did say it's fairly unusual. I couldn't understand why I felt so much better but my vision was still c**p! He says it's just the muscles around the eye trying to settle. (probably from squinting too much!) Stress is also a factor when it comes to getting rid of it. He couldn't explain why my pupils often sit at different sizes though. He said that was really weird!

If anyone has symptoms that are similar or your eyes bounce like mine. I would recommend going to an eye clinic. I wasn't refered there either. I just decided to go. He said it will absolutely 100% go away!

It's such a relief to know there is nothing more sinister going on! YIPEEE!

Oh, and thanks Sandie. I'm on the iron tablets. It can't bl**dy hurt!

Happy Days Are Here Again!!!

loads of love

Katiexxx


Hello everyone;

Jacquie,If you are getting vertigo from allergies then air condition blowing dust even sligt in a clean building could be a contributing factor Sandie; That is huge hope that turns out to be an "easy" fix for you. Great trouble shouting. I talked with my Allergist nurse who has also had the vertigo issues. She agreed that crystals are caused by excess surgar and salt in the diet. She also said she has been prescribed a diuretic with a prescription of potassium and has found it to be a huge help. I have found going that cutting out 75-90% some days are easier than others has gotten rid of that crummy floating feeling completly. And the Shots for allergies has been a tremendous help. Sorry to see new names on the forum. Great stories, Rhonda


Hi all - many thanks for all the extremely useful tips. I am in month 5 now and have been taking gingko and eating lots of grapefruits, seeds and all! After about 4 months I thought I was over the worst, but then my partner left me and the stress brought it all back again just as bad as the first week. It is massively frustrating and I have nothing but admiration for all you people who've had it for years rather than months. Anyway, for those of you living in the UK, I have been going to acupuncture sessions at a place called Kai Acupuncture, in Tufnell Park in London. The guys there are really amazing, and they are extremely interested in this condition and working with people who have it. And dizziness in general. It is pay what you can, anything between 20 and 50 pounds and they have a website: www.kai-acupuncture.co.uk. Good luck to everyone,

Vic


Hi everyone Refreshing to at least hear that doctors in your part of the world are familiar with Labs, where I am in Perth, Western Australia it would be surprising to find someone that is, I have the response that "Labyrinthis doesn't last that long, or - you don't get head pressure etc etc". Thanks goodness for alternative therapies in my part of the world, otherwise I would have been alone with this. Spoke with someone last night who has long term problems with this illness. It was suggested to her by a doctor to inhale steam everyday. 50 breaths and for her the problem goes away if she does. This would depend on the severity of the illness I guess, but hey, it's affordable, simple, natural and worth a go. I'm going to give it a try and see what happens. She just leans over a kettle - would have to watch it though, could easily get burnt that way. I'm going to use an inhaler. Just plain steam, don't add anything to it. I certainly know the yoga breathing helps me as I usually get inflamation draining down the back of my throat afterwards and therefore the head pressure settles. I've read the average time for this illness is two years,does anyone have info on this. By the way it is also the average for ascension illnesses - interesting. One of the advantages of this illness is I certainly no longer worry about the small things in life. Actually I know longer worry much about anything, it's a ridiculous waste of time. I just go with the flow, it's fantastic. What a great way to be. What will be will be. Things just work out, they always do.

Kam - I had feelings in my head at one stage that really concerned me. Very quick shooting feeling - like I had wiring in my head and it was shorting. Only lasted for a day or so and it was in the earlier stages. Had a tingling feeling in my head for months also. Like nerves had been damaged and had to repair and then some weeks back I could feel energy waves or tremors. The Kinesiologist got me to say affirmations for that, and to my surprise when I said them the sensation would tone right down immediately and then went altogether. My Gabba level was low so I had to also get a herbal medicine made up. I have woken on the odd morning and felt it again in a very mild form and said the affirmation again and it just goes. Apparently the right words send out the right frequencies to assist us. I would not have believed it unless I had the experience myself. I just had to say out loud or to my self "I am powerful" several times. I couldn't relate to affirmations before this illness and it felt unnatural to say them. Guess what, not anymore. They are so powerful! Worth getting the Louise Hay book "You Can Heal Your Life". I bought it recently and wished I had done so before. A lot of great simple affirmations in it and a whole lot of great info. I know people who have had some other very challenging illnesses and have healed themselves with the help of Louise Hay books and info.

My best wishes to you all, and remember that this illness gives us a chance to learn a great deal. Don't miss the opportunity. Lyn


Hey Kam

I've had lots of sharp shooting pains in my head (once it was so bad it made my eyes water!) This was happening about a month ago. (I'm 1 month longer than you) I found that a couple of days after there would be an improvement in my vision/dizziness then another headache, an improvement and so on... If you are the same as me, strangely enough it could be a good sign!

Have a look at my post about myokymia just above. That's facial/eye twitching (can be in other parts of the body too) He said sometimes "AFTER" you've had a type of vestibular condition the muscles/nerves in the face and eyes just need a bit of time to settle. Well Kam sounds to me you're not far off lad!

Bravo

Hehe Katiexxx


Hi all: Sounds like many of you are doing better. Katie, you were smart to go to an eye specialist. I've heard that there could be eye problems with this, but it's best to rule out anything. Are you feeling better all around? Kam, I kept wondering when we would hear from you. I had visions of you standing on your head and dislodging those damned crystals. Glad to hear you didn't have to do it and that you are on the mend.Did you start Uni yet? I don't want to say this too loud but I'm feeling a lot better. Started taking herbal diuretics, and I don't know if that's helping or that I'm coming out of a rough patch. I know my problem stems from an overproduction of fluid in the ear, so maybe the diuretic will help. My cold's pretty well gone, so maybe that's it too. But since we know this thing can pop up anytime, I'm only guardedly optimistic. Lyn, you have a great attitude. As much as I'm grateful for the good days, I'm not at the point where I see this as as gift. Well, if it is a gift, I don't like it and would like to return it. Going on a year and I'm fed up. I know some of you (Sandie in particular) have been suffering from this a lot longer. Made an appointment to see the specialist again, see if he can send me to VRT. Potassium is a good idea too, maybe I will get a supplement. I swear I'm getting the vitamin section of the drugstore in business. So maybe this is a gift for them!

Love to you all,

Maria


Hello

Kam, just to respond to your question of shooting pains in your head. Yes, I had that and I found once I started going to Physio, and he worked on my neck the shooting pains stopped. Labs really seems to effect all of the nerves in our bodies. The specialist said that there should be 100% recovery. Hope this helps. Lot


Hello to all of my dizzy brothers and sisters. My first experience with this was 1.5 yrs. ago. I began experiencing vertigo after I had recovered from the flu. It lasted 3 wks. and Poof, it was gone one morning. Those symptoms came on suddenly, in the grocery store, while driving, etc. and then abruptly vanished until the next time. I was prescribed antivert from my physician and I only needed to take it once when I couldn't get off the sofa. It was a very scarey experience and was glad when it all ended. Now, I have just recovered from a sinus infection and again have this crazy vertigo, but it is much different than 1.5 years ago. It's just constant dizziness, fullness/pain in ears, etc. for a month now. I am an extreme health nut so I am surprised I cannot seem to shake whatever this is. However the last couple days I feel better and was able to leave the house today, still don't feel 100% well enough to drive my car long distances. I am taking Oil of Oregano which I think helps with the fluid/ear pain problem. I have heard Citrus Bioflavanoids can help. I do the Neti Pot every a.m. which seems to relieve pressure in my head. I take as many antioxidants as possible a long with Ginger, Vit.C. and B complex for stress/anxiety. I don't recommend getting hooked on a lot of pharmaceuticals because of possible side effects. You don't want to trade one health issue for another one, trust me on this. Try not to fight this with anger or a why me attitude, just accept it, and pray for strength to bear it as I have. Just be in the moment and don't worry for tomorrow until it get's there. People don't understand it because we look well. Trust me, you only have to understand it, don't look for validation in others because it will leave you feeling more alone than ever. I pray you all get well and have faith. This thing has dragged me on my knees, but I am fighting it all the way. Take adv. of the moments when you do get some reprieve so you will not feel totally isolated. God Bless.


Hi everybody

Just a little update on the results of my ferritin test. The normal levels for a female are between 12 and 125, obviously the higher range being someone who is full of health and vitality and the lower number being someone who is bordering on iron depletion. My result was a 10 which is below normal. Lots of the symptoms of iron depletion are very similar to Labs i.e. dizziness, chest pain, palpitations, sore tongue etc. I have suffered all these symptoms and more for years since I first got Labs. I am thinking that I had the initial attack three and a half years ago when I was really quite ill. I suffered from dizziness, balance problems, anxiety, and also had terrible diahorrea and lost two stone in weight. This lasted nearly six months. Maybe this has been the start of my problems and the resulting dizziness etc has not actually been further attacks of labs. I am thinking this because every time I have suffered a relapse there has been something else going on i.e. a virus or in the last case, mumps, which would make my body try and dip into these iron reserves which I just do not have - resulting in worse dizziness and balance problems.

Anyway, that might just be me trying to make some sense of all this!!! I'll have to wait and see how I feel when I have been given some treatment. But, the fact remains I am iron depleted, which for me is the result I was hoping for! I see my doctor tomorrow and we will go from there.

Katie, you are so right and I actually said to my husband yesterday that most of us on this board are women! That says a lot and I have always said that my worst 'dizzies' are on the fourth day of my period, which are heavy, (maybe when I am trying to dip into these reserves again?).

My iron has had to be topped up during the times I have been pregnant so I would say there is definitely a problem there. Also, Katie, I am not sure if the tablets you can buy at the chemist are any good for this, as the lady who made me aware of this test said that they were only available on prescription. Not sure what they are though.

How old are you Katie? You sound young, but you are like a breath of fresh air to us here, and you will get over this because you have the right attitude. Good for you!! My daughter is studying in Edinburgh at the moment. She was 21 on Sunday and we went for a lovely chinese meal to celebrate, and guess what, no dizzies. It is the best night I have had in three years as usually I just sit there thinking I am going to pass out!

I also had an eye test a couple of weeks ago as I was suffering jumpy vision a few months ago. However, my eyesight is near perfect, not too bad for someone my age (47), so I was pleased with that. Katie, my pupils are slightly different in size, but the optician didn't pick up on it so I guess it's normal. If there is a huge difference in size I would get that checked out if I was you by a doctor. Also, do you do any gaze stability exercises? I still do mine every morning but had stopped before my vision started being a bit jumpy. Once I started again it seemed to clear up the problem.

Kam - I also get shooting pains up the side of my head. The pains feel like they are actually running along the length of a vein and last for less than a minute but they do come on suddenly which can be scary. I think this might have something to do with migraine as you can actually have symptons like this without having an actual headache.

Oh well, I hope you all get better soon.

Take care

Love Sandie x


Hello to everyone Very interesting day today. Found out I have heavy metal poisoning. This was suggested to me by two scientists I came across early in this illness. I was very niave then and dismissed it. Mercury and lead poisoning and of cause why not. Heaven only knows what we are bombarded with in this modern society of ours. Need to have my fillings removed and replaced with the white options. More dollars, but it has to be done. The symptoms we experience with Labs are what happens with these poisonings. Can be simply solved though and inexpensively. Need regular amounts of Cilantro (Corriander) it detoxifies heavy metal poisonings. I made up a very easy pesto and mixed it though pasta tonight. Very yummy and very healthy. Need corriander on a daily bases without overdoing it for a while to detoxify. It kills viral and bacterial infections. And then continue as a regular in our diets in salad etc etc. Info on the net if you search as well as recipes. Some may not like corrieander, but made up in a pesto, I wouldn't know it was Corriander. Also I have to do a bowel cleanse with a product called "Herbal Fiberblend" otherwise this illness will keep flaring up if not eliminated in that area also. I have to have daily amounts of corriander in my diet and take the bowel cleanse for about a month to flush as much rubbish out of my system before getting my fillings gradually removed as I can afford it. And then my system will actually be able to asborb nutrients from my food and function so much better. With the emotion cleanse that I have also been working on and now this I should be feeling a lot better in a month or so. Apparently the poisoning causes head pressure. I will let you know how I go. Lyn


Hi everyone,

I hope you're having a good or at least "stable" (as I call it) day!

I was doing really well for the past couple of weeks, but had a severe nausea attack on Sunday night. I hate going to bed thinking all is well and then WHAM waking up sick. It's the most hopeless feeling.

I'm also wondering if anyone else gets weakness in their arms and legs. Almost like you need to stretch them, but it comes out of nowhere. Also, heart palpitations (for lack of a better term)?

Tomorrow it will be just shy of four months since this whole thing started and it's really starting to drive me bonkers. I just want to have the energy I once did and not feel "hazy"!

Take care,

Dawn


Hi Sandie

I'm 28 by the way :) And I was in Edinburgh last week!

Really interesting what the Dr said about your ferritin levels. It's like all the pieces in your puzzle are finally coming together. It seems to make so much sense. Labs without question of doubt drains your system of every reserve it has. Without the reserve troops your body just can't nail it. This makes total sense for your situation because you've suffered for so long. Not to mention all manner of other bugs setting you back. I can't help but feel optimistic that this is your solution :)

I'm only on regular iron 200mgs. Have to add.. most of it seems to go through without any affect! When I suffered from anaemia as a teenager they gave me methanemic acid (please excuse the spelling) It's supposed to reduce blood loss. Mega powerful but they really did help. Let me know if you find out the name of the other one. As for my pupils who knows? sometimes they're identical and sometimes not. (Two doctors had no idea) Although when I mentioned this to my sister she said that hers have always done that!!! Maybe I just never noticed before. Surprising... because I wear a serious amount of eyeliner. Hehe

Will have another go at the GS exercises. Been sciving you see... Haven't done them for weeks!

Glad you had a great night out. There will be plenty more to come. It's bl**dy marvellous.

Happy Days lass

Maria... absolutely fine honey. Just the jumpy eyelids!

Katiexxx


It is SOOOOO good to read all this information on VL though I was told I might have Menieres. I have had 10 days of nausea controlled (only just) by Buccastem under the top lip....am due for an MRI scan this week just to be sure. It is the most DREADFUL feeling to be so nauseous and unbalanced and I am also stone deaf in the left ear with horrendous tinnitus. Hopefully the ENT specialist will have an answer for me - meantime it is comforting to know that I am definitely not alone! Almost everyone who has heard of my lousey 10 days has either experienced something similar themselves or have a friend or family member who has. Thanks so much I will continue to come back to this site for encouragement! Cheers Misty


My wife suffered very badly with dizziness. It was so bad that she was hospitlaised for 4 weeks. Her consultant then carried out the "Epley's Manipulation" and she fully recovered.


Hi everyone:

Sorry you had to come down with this thing, Misty. A lot of people get over the virus in 8 weeks or so, so you may be fortunate. I find it so helpful to interact with people who know exactly what it feels like. If you mention that you feel like you are walking on marshmallows, they kind of look at you. But you guys know exactly what it feels like. also that you feel your head isn't quite attached, or your legs are not quite going in the right direction. I guess I wouldn't have understood either, until I had it myself. I'm on my second week of feeling quite a bit better. Got rid of my cold, and we've had no rain, so maybe that's it. I daren't think that I am actually getting over it. But better is good, and I'm very grateful for every good day. John, it sounds like you are doing everything to try and fight your episode. I tried Oil of Oregano last year, and it did nothing for me, but I am finding herbal diuretics are helping (at least they seem to be).

Kam, Sandie, Katie, are you holding up o.k? Lot, you sound like you are completely over this. You were so good about all your exercises. I walk a lot every day, but all this VRT, half the time I forget to do it. I will probably pay for it.

Dawn, I'm sorry to hear you are having a relapse. This illness is very cruel. Just when you think you are getting rid of this bugger, it comes back full force. The ups and downs re enough to drive anyone straight to the psychiatrist's couch. I get palpitations too, especially when I feel worse. Apparently it's common. Hang in there. We are with you. I'm grateful for good days, but even when I'm not, I'm grateful for friends like you guys. And I'm very grateful to Rich Baker for keeping this site going for all us dizzies.Rich, you have and are helping so many people. Thanks you so much.

Hugs everyone Maria


P.S. to my comments yesterday - I woke this morning and the world had stopped spinning...Yay!! Have forced myself to try to do normal things today as I also believe lying around makes one feel worse....keep reminding myself that poor Beethoven was far worse off, he couldn't even hear his sublime music, at least one of my ears still works! Cheers Misty


Thanks Maria for the words of encouragement - and to Richard, I tried the Epley Manoeuvre, with my doctor's supervision, but it only seemed to make the head spin more....! Ever hopeful that this week's visit to an ENT specialist might work a miracle for me.

My other problem is that I am only 4 weeks into recovery from knee replacement surgery and should be exercising to keep the new knee joint flexed...but to exercise, one needs to life one's head from a pillow! I am hoping to hire a CPM machine today to exercise the joint for me. Wot a bummer!!

Hugs Misty


Hello All! Unfortunately I'm not quite over this, but I feel as though I'm getting closer. I keep adding more and more exercises on to my routine. I'm able to be active for longer periods of time but still have dizzy episodes. One of these days it will completely go away and that will be a happy day. I continue to get out walking. I find the little movements bother me the most. Cooking is bothersome. Opening the fridge door and reaching inside, washing dishes...all the little things. This will improve also. Keep up the good work everyone. Lot


Hi to everyone I do feel for you all with this illness. I'm lucky I found the answer to my balance problems with taking flower essences. I would be in the same boat though if I didn't discover them and the ways I can use them, and there so natural with no side affects. If I stop though at this stage the problem would return. My condition is cronic so I am very grateful. My head pressure with the weather we have had in Perth in recent days is limiting the length of time I can drive. but that's okay, it will get better. Lots of deep and slow breathing ever so often during the day and then I get imflamation draining down the back of my throat and begin to get some relief. I am also lucky that I came across a Kinesiologist who had been a cronic fatigue suffer and had gone all over town to specialist, alternative therapist etc (as we all do with long term illnesses) and found that Kinesiology was the only thing that could kept pointing her nose in the right direction for what her body needed at the time. We have all been so brainwashed with our health care and it can be hard to believe that "our bodies" are the only one's who truely knows what we need and when we need it. It's gradual though, no quick fix. And what our body requires at any time many come from western or alternative medicine so we receive that information and go off and seek that assistance. Think of the process as peeling the layers from an onion - as we heal each layer, it is removed and the next issue to work on is then revealed. We do get re-educated as we help ourselves with this process and that's a positive. I also believe that these longterm illness could be to teach us to live in the now - in other words not hold on to resentment, fear etc etc. As has been pointed out to me on more than one occasion - it's a cleansing gift. I think of it as tough love. I've had this for a year in another week and I know that I certainly care very little about anything from the past already, but deep down I'm sure there is still a way to go. Anyway I'm getting on with the cleansing process that I have to do with the Corriander and the bowel cleanse (takes about 3 months) and gradually having my fillings removed, as it's affordable. I have a quality dentist and he doesn't charge outrageous prices as some have been. I'm hopeful that I might have reached the centre of the onion by then and can return to good health or at least be almost there. Wishing you all the best Lyn from Perth


Hi all,

Have been to the docs and she seemed to think that there is no connection between low ferritin levels and dizziness but if you look into the symptoms of having low levels on the net they all say there IS a connection! I didn't mention this of course because they don't like to hear this do they. Bloody GPs in this country are so c**p, they get paid fortunes and they really don't do anything. I have never once in years actually been asked what my symptoms are. I do actually have quite a few of the symptoms of low ferritin, (I would have saying as I am low in ferritin), but did she ask about any of them - NO!!! Oh, I get so frustrated, they just don't seem to care. All they are is penpushers, anything slightly scary for them and they would refer you anyway. My sister's friend went to the doctors over the last few weeks with severe headaches which were just getting worse and worse, and was told that all he wanted was a sick note! WHAT? He hadn't had a sicknote for 5 years before that. He was really poorly and went to the doc 6 times over a couple of weeks and the doc said it was stress and basically there wasn't anything wrong with him. Eventually he couldn't lift his head off the bed, he was in agony and vomiting and he would not go back to the doc because of their attitude but his wife practically dragged him there. The doctor said to her "what do you want me to do?" She told him she wanted him to have a head scan so he was referred and guess what, a massive brain tumour with a cyst wrapped around it. Straight into surgery and recovering at the moment. But it could have been such a different story. That's the GPs for you in this country - not worth a nut.

Well that's my gripe for today. I don't think she was even going to treat me for the ferritin, which I also can't believe because if you get too low that is also dangerous, but I said that I would like to have a course of treatment to see if it made a difference. After all they are supposed to give you treatment if you are below 50 never mind 10 which I am! It's difficult because you can't really vent your anger with them because they just strike you off, there are notices all over the place in the surgery warning the patients to behave themselves! No major changes as yet but it has only been a few days. I am quite good at the moment anyway, just minor dizzies, so life goes on!!!

Katie, you are right, it does make sense for my situation. Every time I fall ill, my body will try and dip into these reserves which are just not there resulting in extra dizziness and balance problems. And, you better get started on those GS exercises, I'm not so far away that I can't be after you, haha.

Lot, when I was first struck down with this illness washing dishes was an absolute nightmare! I think it is because you are looking down as I also had the same problem with ironing and sometimes still do!

Keep going though, and try and keep smiling.

Take care

Sandie x


Sandie

Pay no attention whatsoever. The way I see it... If the doctors knew what was wrong with you and how to cure it. They would have done it 3 years ago! They really don't listen at all. Nor do they have the smallest understanding of how head-wrecking the whole thing is. Just a little bit more interest and concern and we'd all be doing much better. At the end of the day... every avenue should and must be looked into.

(My story is not on the same level as your sister's friend). That is one of the most shocking things I have EVER heard!!!

When I was a child I fell on some stairs and hurt my wrist. My mother took me to the local A&E. The doctor point blank refused to x-ray it. Her justification for this was, I quote... 'She isn't upset enough. It isn't broken' Unconvinced and livid, mum drove me to two more hospitals! In the end we were seen at Yorkhill children's hospital and yes... It was broken and in two places. Idiots. So I'm totally with you on that one. Fix yourself because they're not going to.

'Surrounded by Incompetence'

Maria... Hope you are doing well?

Love to everyone

Katiexxx


Hi all

I think i am almost normal now, its been 3 and a half months. Theres times i dont even think about it. I can go shopping, for walks, do most things for long periods of time.

All im left with is a slight pressure behind my right eye which causes it to get dry and irritable at times. Has anyone else had problems with their eyes like this?

I still am not 'fit' and will start to tire quicker than i used to. But i can notice improvements all the time.

Also i notice that im getting alot of muscle twitches recently!! Has anyone else had this problem? Let me know!

TC everyone!


Hi all, It's nice to hear from everybody. Sandie, your friend's problems with doctors seems fairly typical. Maybe it's better in the USA where you have to pay for it, but I'm not sure. I had a similar problem with my husband. He was having seizures, and the Neurologist put him on anti-seizure medication. The seizures continued, and the Neurologist said"it's not that unusual to have seizures." What, is he nuts? Well this continued for another 6 months, when the doctor became "concerned" and referred him to a Neurosurgeon. He right away said it was a brain tumour. It turned out to be inoperable and he died 5 years later, at the age of 48. SO Katie, I agree, we are surrounded by incompetence. I'm having a setback of sorts after 2 very good weeks. Flu-like symptoms that come and go, and some dizziness. also some sinus problems which I think affect Labs. It's also gotten very hot in the past couple of days, and that's when it started. Does anyone know if our immune system is severely compromised as a result of this? Lyn do you know? I seem to be more susceptible. More allergies, that's for sure. Head feels like it's full of cotton, and there is always that good-old marshmallow feeling. Lyn, I agree that this has taught me to live in the present a bit more, and like you I'm going on a year Oct. 12. I see the ENT on the 9th. See if he can refer me for VRT. Lyn you and I will have to send each other anniversary cards! Sandie, so glad to hear that you coping with just mild dizziness. I find when I get a setback, I get anxious that it's something else. But the ups and downs probably means it's Labs. anyway I don't have any other symptoms. I tell you though I'd rather be on crutches than deal with this. The dizziness makes it hard to plan and to commit to things. Although people say you should try and live as normal life as possible. Katie, sounds like your better too. I too have been lazy about my GS exercises, I was feeling so much better. Felt I was over it. Ha! Dawn, I know how hard it it is when you have a couple of good weeks and then you have a relapse. It really does drive you bonkers. Misty how're you doing. Any improvement? Everyone, stay positive.

Hugs, Maria


Back Again!

Got my MRI results. Totally clear. Yipee!! I'm starting a new job on Wednesday. Just 10 minutes from the house. And for the icing on the cake I got an offer from a publisher in New York to read my manuscript and have a look at my illustrations! (I've written a children's picture/story book) It's so fantastic when things start to go well for a change!

Mega nervous today. My friend's having a flat warming party in Dundee and I have over a 100 mile journey to do in the car. Wow.... SCARYTASTIC! Vision has improved again, so to h*ll with it. I'm going for it.

Sandie, Maria and Kam. How are you all doing?

Lots of love

Katiexxx


Hello all! After several months of debilitating panic attacks and endless medication changes I was diagnosed with Labyrinthitis (Side note: I still can't stop picturing David Bowie dancing in my inner ear. Childish, yes, but there ya go.) and am glad to have maybe (finally) found the cause for my panic attacks, but am at the same time worried because the doctor didn't give me a lot of ideas of how to overcome or live with this other than wait it out and take travel sickness pills. The diagnosis came after I passed out and fell down the stairs at my parent's house. Five plus months of medical tests and it takes falling down the stairs to make my doctor look in my ears and figure this out. Go figure. Anyway, the medical support in my community is absolutely horrid and I was wondering what kinds of tests I should expect (or request) and what questions I should ask. This is something totally new for me. Thanks!


Hi Katie

I'm doing ok, still having a couple of hours a day where I feel pretty yukky, mild balance problems and mild dizziness, but still able to work through it. Gotta be tough!! Don't feel any different with the extra iron I'm taking apart from my stomach feels a bit unsettled but that's to be expected. I'm not going to put it all back in five minutes when it's taken years to deplete!! I just hope with all my heart it is the answer to my problems!!

Hey Katie, good luck with the book. It all sounds so exciting. You should use the name 'scottish katie', it sounds so sweet!! And, hope the drive went ok to your friend's party! You are so brave. Good news about the MRI results and good luck with the new job. So much going on in your life at the moment - go for it lass!

Maria, so very sorry to hear about your husband, that must have been so hard for you to bear. It just goes to show, if we think there is something really wrong we must push and push for answers.

You are so right about rather being on crutches. I have often said that I would much rather have a broken leg or something like that because I would know that at some time I would recover. But with this thing it just goes on and on and on. And while I do have a good quality of life most of the time, I don't know when it's going to hit again. Also, I, like you, have had so many allergies over the last year which I have never suffered before.

So my friends, life goes on. What we have to keep in sight is that this thing is not life threatening so in a way we are lucky!

Anna, where are you? I hope your absence means that you are enjoying life and your recovery has continued!

Take care

Sandie xx


Sandie

As far as the iron goes it will take a long time to kick in. I believe 3-6 months is realistic. However, If you eat iron rich foods it will be faster. You know the usual; Red meat, green leafy vege and apricots! Spinach works well but you have to cook it first in order to release the iron. I also know increasing your VIT C intake allows the body to absorb more iron. So that might be of help. As far as your stomach goes, mine was a bit unsettled too and I've started on those actimel drinks and it does seem to make a difference.

The drive to Dundee went really well. I'm so chuffed! My god I was knackered after it though! As far as the book goes I've been submitting material under the name Rufus Digby, So if that name is ever in the shops, it's me. - Would take a miracle though! Hehe

Maria I'm so sorry about your husband too. It's just so unfair. It must have been the most terrible time for you. It's so frightening to know all of our lives rest on someone elses professional/or NOT so professional opinion.

As far as your question about our immune systems being compromised by labs, I think so. It certainly feels like it. Doesn't it? Mental state is tired and fed up, physical state is tired and fed up. I know that one affects the other. I really think labs strips everything out of you. I know as I became more positive and started to eat better I gradually became stronger. What do you think? There's got to be a reason why alot of us feel we've done 10 rounds with Mike Tyson!

Hope everyone is having a good week. Love to you all.

Katiexxx


Hi all: Sandie and Katie, thanks for your sympathy. This happened 13 years ago, and the boys are now 27 and 23, so it's better. But the teenage years were trying and the boys weren't even that bad. Just did and said idiotic things. They have/are settling into normal and intelligent lives, and I'm grateful. But I do feel my husband was cheated. Way too young. And just at the peak of his career. But I know that things don't always happen to other people. I'm still fighting some kind of virus. Up and down. Like the stock market. Actually that is more down and down.Went to the doc today who gave me a new nasal spray. Says there is inflammation although he says it's not an allergy. Says our bodies get tired from having to balance all the time and therefore are more prone to stuff. That made sense to me. He has stopped treating me like a hypochondriac, and seems to be taking "your inner ear problem" more seriously. At least he was listening. Am seeing the ENT next week. will ask about VRT. Still feel like I just got off a roller coaster and my legs are a bit like jelly. Also very tired.

Katie, you sound very positive, that will help. I get cranky and depressed when I have yet another relapse, although it sounds like that is characteristic of this condition.

Sandie, you are right. It's not life threatening, but it sure is debilitating. Do you know that almost every social activity I plan is done according to my Labs condition. Will I feel Okay? What if I don't? Will have have to cancel or skip? Never thought about it before,boy it sure changes your life.

Well fellow-sufferers, do take care of yourselves.

hugs, Maria


Hi Meghan

Sorry it's taken so long to say hello. I started a new job this week and I'm totally knackered!! Everyone one this site seems to have had trouble with the medical lot. Two appointments with the nurse and two different doctors before I got my diagnosis! The drill seems to be ENT( ears,nose,throat) clinic. When I saw the guy there he just tried to push me over! Surprise... it wasn't any help WHATSOEVER! Hah! (Hearing tests etc) Then MRI scan - I know some of the other guys have had other tests as well. I went to an eye clinic too. There seems to be so many variations on the symptoms, but all of us still seem to have plenty in common.

Anyway most of us just try to help each other. The doctors are only helpful to a point if at all. Mine were useless (travel sickness pills for me too!) and they really don't know sod all about it. Mores the pity for us lot!

My labyrinthitis has gone now. I just have slightly jumpy vision. Whatever you want to know we'll all try and help as best we can. And as for the dancing in your ear... My friends kept asking me how my David Bowie was going! So I can relate to that :)

Hope you are doing ok

Katiexxx


Hello every1

ahhhh i have flu...i dont know if its affecting my labs...too scared to try..im just worried its gonna send me back to square one!!! :( :( :(..whtas the chance of this happening????

noooooooooooooooooooooooooooooooooo


HI All: Hope everyone is coping, more or less. I'm still fighting some kind of virus, which went away for two weeks then came back. Meghan, I'm sorry to hear that you are having to put up with this crap. Have you seen en ENT yet? Sandie, glad to hear that your dizziness is now only occasional. How long has been for you? 3+ years? Katie, wonderful news! Labyrinthitis almost completely gone. Good for you. I told you your sense of humour and positive attitude would pay off! Kam, the flu will make you feel worse, probably, unless you are finished with Labs too. Your system cannot cope with more than one thing. On the other site,(Labyrinthitis.org) every other person seems to have a virus that goes on and on. If you feel you are back to square one, you are not really. The brain simply cannot compensate when there is a cold or flu. You will go back to the way you were feeling when the flu goes away. Off to the ENT tomorrow. Will push for VRT.

cheers everyone Maria


i have bppv - does anyone have the same symptoms as me? tighting of my head that travels from side to side and up and down - vertigo - dizziness - pressure behind my head along my neck - what a mess i feel - had an mri done found nothing and alot of ringing in my ears. would like to hear back


just a thought...

in my case my right inner ear was supposedly infected or inflamed...now if its permanently damaged?? and my brain is currently in the process of compensating...

when i have fully compensated...what if the same thing happens again...as in what remains in my right inner ear to be damaged even more?

..its already been compensated for...? so how can there be re-occurences if theres nothing left to damage and its already been compensated for in advance if you get me???

unless my left side got infected of course...?

and if my brain is relying on my left side..what and that gets buggered too...then il have no balance?? thts why im finding it difficult to believe in this compensation bs and to believe that a part in my head will be left permanently damaged!


Hi Everyone:

Kam you are not alone. Your flu or virus is not part of your inner ear problem. It's something seperate, but it's just that your system cannot cope with dealing with both at the moment. I've been fighting a flu, virus or whatever for weeks now. It goes away for a day, then comes back, I just can't stand it. It's got me all anxious that's it's something else. But it feels like my sinuses are acting up and I get headaches, and also my stomach's unsettled. Brenda, Have you been diagnosed with BPVP? I know the symptoms are different from Labs or VN so I don't know. I thought ringing in the ears was a sign of Meniere's. I just feel sick all over, like some bug that won't go away. Everyone else, hope you are feeling better.

Hugs, Maria


Hello everyone,

I've just been reading through the threads...WOW! It is so good to know I'm not alone (not that I'm not sorry for everyone). I've entered my fifth week of 24/7 strange dizziness, fatigue, nausea and the odd tension headache...as well as my fifth week of being unemployed because of all this!!! After visiting an ENT doctor, an ophthalmologist, two different GPs and our family doctor (private), I was finally diagnosed with Lab! Not that any tests were done to confirm this is what I have, but based on my symptoms the family doctor was quite adamant in his belief...and after reading up on it, I have to agree with him! No problem with my ears thank goodness. I was told to take Stugeron (travel sickness pills) by the doc but it's my fifth day and no change so I'll probably bin them tonight. My first GP gave me Serc but never explained why and in all honesty, I think I began to feel slightly better until the ENT doc said it was pointless as my ears were fine !?!?!?!?! So much for him!!! Well, I hope that I will be lucky enough to recover within the next few weeks because this has put my life on hold and I am not at all sure how I will begin to cope with this long term. From a bubbly happy-go-lucky party animal I have become this person that sits in a daze for most of the day feeling trapped in somebody else's body and looking out of somebody else's eyes...something I wish on no one!

Best, El


Hi El: Welcome to the dizzies site. Sorry that you have to go through this c****, but most people recover from Labs in about 8 weeks. But you sound like you are having the same symptoms as the rest of us. You are absolutely right, it's like being trapped in someone else's body, like being in the Twilight Zone. The Serc worked for me in the early stages. I'm now at the one-year mark, but I have setbacks, as do most of us on this site. They usually accompany a cold, or a virus. Today I feel o.k. Yesterday I felt awful, day before I felt okay. A real yo-yo existence. Take care of yourself, don't overdo at this point, just baby yourself, more than likely this won't last much longer. Kam. are you still having flu problems.Try not to get anxious. Hugs everyone Maria


Hi everyone,

Kam, there's some really good advice about how this illness works on the inner ears disorders board, the link is at the top of this page. You will find the advice in the stickies at the top of the message page.

As Maria says most people recover from Labs within eight weeks and never ever have any trouble again. For some of us however, it is a much longer process. Once you have Labs, some part of the ear is damaged and this will be damaged for life. The brain however, in most case, can compensate for this damage and it learns to ignore the dodgy signals it is now receiving from your damaged ear. In people like me, who keep relapsing, the brain actually forgets what it has learnt and you are back to feeling dizzy/unbalanced etc. You should never, however, feel as bad as you did in the early days of this illness.

As time progresses, you will also get more used to the dizziness and balance problems you have. I find that if it starts to happen when I am at work or out for the day I can laugh it off in most cases and be positive about it. Sometimes, it can be really bad and I have had to take time off work but even so it has never been as bad as that first time when I was incapacitated for 5 months! I thought I was at death's door then!!!

Be positive, keep healthy and active and you will win this battle.

I have heard of people who have like me been battling with this illness for years and it has gone away, so there is hope for me yet.

Take care

Sandie x


Hi everyone, I got Labs about 4 years ago. On a Cruise Ship. Passed out it was so bad. They said the ship virus traveled to my inner ear.

I had it for years and went to 3 different ENT's for help. The first 2 said I was just going to have to live with it. I said...NOT.

My last ENT pulled out a list and said..lets start from the top.

One thing he noticed was I did not have as much saliva from one side as the other. So he did a procedure on me where he basically stuck a knitting needle up my salivary duct in my mouth. When he did it there was a ...POP and about a half cup of gross stuff poured out of my mouth and I felt almost immediately better. He said that something completely blocked my salivary gland and that it caused it to back up and press on my inner ear. I still feel like al of it was not cleared out yet, but my dizzyness is so much better I can't explain. To everyone...Keep looking...Find a Dr that is willing to work with you. My first 2 were only concerned about getting their quota of patients for the day done.


This site has been a Godsend. I have been experiencing a majority of the symptoms everyone has mentioned - the lightheadness, dizziness, swaying, fullness in ear and only recently - an extremely heavy feeling in my legs (ie feels like the force of gravity pulling me down)

Unlike some of you - I haven't received a diagnosis - the last doc I saw requested blood work and an MRI. She says everything leans toward VL but needs to rule out any other serious causes. I saw an Audiologist, did an extensive hearing test - came back normal - did the ENG and they said my left ear showed significant weakness compared to my right (but the right is the impaired side). I did an MRI last week but won't know the results until next week. I don't know what to make of all this because its the 'Not-Knowing' that is hard.

But does anyone get the heavy leg feeling? It sometimes accompanies a very slight tingling sensation in my feet. It feels like someone or something is pushing down on me. It comes and it goes (whether I'm sitting or standing) but has been fairly constant recently....your comments and information have been such a comfort! Keep your head up! :) T


Hello, It has been months since my last post. For those of us who have "relapses" check out post-viral autoimmune response/disorder on the internet and see if you find anything interesting. I believe I had a severe viral illness-labs I guess. It's been over 2 years however I have what I know is an autoimmune response to the illness. i don't feel as bad as i did in the beginning (thank goodness). i too thought i was going to die. but i have periods of a few weeks where the same weird symptoms flare up and i feel miserable and then after a few weeks it goes away and i feel almost normal for a few weeks. and then it happens again, over and over. it feels like inflammation. during the episodes the fatigue is terrible. so just thought i'd throw that out there. because i know what it is i am not scared anymore. and no, doctors didn't tell me this. they weren't smart enough. after much searching i figured this one out on my own.


Hi Everybody!

Ok, what's the latest? New job is going pretty well. It's just so amazing to finally have some cash coming in! I swear I haven't been this broke since I was 16! That will teach me to get sick when I've got no money!

I still have myokmia but it's improving all the time. Feel stronger and much more normal again. I Had one of my wisdom teeth pulled out today. So have a couple of days off work. Stuff it.. I'm going to the pub!

Sandie. How are you honey? I'm still convinced the iron/ferritin thing will come good with time. Keep at it and don't be swayed.

Maria. Are you feeling better? I hope so. Try not to be anxious about stuff. It only holds you back. I know its so bl**dy hard. You've coped with much worse cr*p than this. I 100% believe in you.

Kam. How are you? Has there been any improvement?

Hello T... A couple of months ago my legs felt like concrete and I had tingling feelings in my hands and feet. I wrote down all my symptoms for the Dr and there were 18!( Seems to be the way of it with VL) Try not to worry about the MRI. My friend is a GP and she said they would call you in immediately if there was something more sinister going on. - No news is good news! How long have you been unwell?

Cheers all

Katiexxx


hello every1

have i improved? well i dont know...i hvnt really tested myself...i know i should be.

But im writing this at 4 am for a reason. Just now i layed down to sleep and closed my eyes and got some vertigo ish symptoms - the room starting spinning slightly...i havent had this since like 4 months ago! and even now as im typing i feel pretty bad...especially if i try an concentrate on one point im finding i feel a swaying/general dizziness/vertigo ish sensation and theyve been going for the last 20 or so minutes!! is this what you call a relapse?

has any1 experianced this especially when you close your eyes (and they move all over the place by themselves) or concentrate on one point with your eyes???

And i actually thought it was in its last days!!


Hi everybody: Welcome T. You will find this site very helpful, and the people very supportive and very caring. Sorry to hear you have to suffer with this. I haven't had tingling,but I have heard of people that do. Are you sure your problem isn't Migraine? I believe there is tingling with that.Read the book, Heal Your Headache, it's very helpful, you might find some answers in that. Megan, it's amazing that you have been diagnosing yourself. But are you quite sure you have an autoimune disorder? How often do you get these relapses? Maybe it's just another virus that is causing the inner ear thing to flare up. I'm just getting over (I hope) a virus which seemed to mimic last year's episode, but not as severe. But I have talked to a couple of people who have had the same kind of virus. If you had an autoimune thing, wouldn't you be getting sick all the time? Well, I hope it isn't that, because it's even harder to deal with this illness if your immune system isn't working properly. Are there immune boosters shots they can give you? What about vitamin B-12 shots? Keep us posted. Kam, how are you doing? Maybe your flu-virus is making dizzy while you are lying down. It may be taking you a long time to get over it, on top of Labs. Do you have a temperature? The eye movement thing has to do with balance. It's one of the things that the ENT checks.

Katie, thanks for asking about me. You are very sweet. Are you still feeling quite a bit better?

Lambda, how lucky you were to find a good ENT who knew what to do. Of course all that pressure would make you feel awful. Good for you! Are you completely clear now?

Best go and make supper,

Love to you all, Maria


Maria, I stated that I had an autoimmune response to the virus I had. And yes, the relapses occur every 1 to 1 1/2 months apart and last 4-5 weeks. Autoimmune problems happen when the immune system is hyperactive not hypoactive. So I would not necessarily get any sicker than an otherwise healthy person would. I haven't had a cold or flu in over a year. What happens is that the immune system attacks healthy tissues for whatever reason. The cause is not known. I do feel quite sick when this happens but it does not feel like another virus attacking me. As I said it feels like inflammation-kind of like a burning sensation. I am in the medical profession and have worked with folks who have autoimmune disorders. To give an example, one lady had multiple sclerosis. When the attacks were occurring she had trouble moving the left side of her body and when the immune system quit attacking her tissues, her movement on the left side would recover. But unfortunately, every time the immune system attacks healthy tissues, it causes a little bit of damage. Over time as this process continues, you see the damage that an autoimmune disorder does. So anyway I hope this explains things. Thanks for asking.


Hi Maria, if you read the older posts in previous pages, you will see how bad I had it. I was on Short Term Disability for 1 month and could not get out of the recliner and could not close my eyes. I did a lot of reading myself and found Ginko mixed with valeria helped me, I also cut out my caffeine totally and did a lot of other stuff. It took years, but i was managable. Still got dizzy, but was able to do my job. when the Dr did the procedure on my salivary gland it was amazing the results (it hurts by the way). I still get times when I push myself of slight dizzyness and tiredness, but I put myself in the 99% cured category. Still think there is still some blockage in my duct that needs to be worked out. I recommend everyone to look at all parts. remember your ears are connected to your nose, throat, teeth (since they are in your sinus), ears... any one of them could be inflamed, infected...and could mimic Labs if it is causing your inner ear issues. I am not a DR, but that is what I have learned from reading all the websites out there.


Hi everyone, thanks for explaining that Megan,although I confess I only half understand it. But at least you know what it is, and you can deal with it better. I find the worst part is the not knowing. I'm not positive I have labs,but the GP, ENT and chiropractor (who is the brightest of the lot) seem to think that's what I have. I had no test done, I got a diagnosis based on the symptoms. Am going for balance tests on Nov. 3 and hearing tests on Dec. 4, then I will get some answers I guess. But I'm going through a bad patch of whatever the heck it is. Been going on,on and off, for a month now, although a lot of days have been fine. It feels like it's a variation of the same virus I had last year when I started with this demon. Which brings me to an interesting point. When my 16-year old son had it (he is now 22) the specialist told us the virus stays in your system for up to 2 years, and you could have relapses. My specialist told me it doesn't usually go on that long, but it can. So what's the answer? Kam, any improvement? A lot of us are down with viruses. Just don't get it.

Everyone, one day at a time

Hugs, Maria


Hi everyone - been reading back all the threads since my last post in September....thanks for asking, Maria, a month ago and apologies for late response. My dizziness and nausea have gone, thank goodness, but I am left with distorted hearing in the left ear and horrendous tinnitus. The MRI 3 weeks ago thankfully revealed nothing sinister. The ENT is convinced I had (post knee replacement surgery) an embolus which lodged in the small artery in the inner ear and caused all the symptoms. Very rare but it has been known to happen after lower limb (hip and knee)surgery. So it looks as if I will need a hearing aid in the long term as he is certain my left ear will never recover its hearing. Very grateful for my almost perfect hearing in the right ear but the left tinnitus is a PAIN! Take care. Cheers Misty.


Hi everyone,

Hope you are all feeling better. I know there are a lot of viruses about at the moment and I myself am suffering another one. I had my flu jab a couple of weeks ago as I have asthma and I am feeling a little run down at the moment. Everyone was saying that it has been causing people to catch a cold up to a week later which I didn't really believe but lo and behold, 6 days after the jab I got some kind of virus!!! I started to feel dizzy again and slightly off balance but have managed to do 3 days at work which I am proud of!! My ears have been a bit blocked and the right one was actually 'clicking' as I walked yesterday, must be full of gunge. But, the good new is, it's not the relapse I was expecting and I am still able to get on with things. That's the trouble with this thing, every time you suffer a cold or virus your symptoms return. But hey, I am one of the unlucky ones and I will keep my fingers crossed that all of you get better soon. I have had this for nearly three and a half years but I have heard of people recovering after 5 years so there's hope for me (and everyone) yet!

Take care

Sandie x


Hello to all,

A little over 6 weeks ago I had a dizzy spell that lasted for just a second, kind of like when you sit up too fast. About 8 hours later I had the same dizzy spell but was much stronger and lasted for a count of about 3. This one made me wonder "what the hell was that" but it went away so I forgot about it.......until about 12 hours later. I was working in the garage, when the dizzy monster came back with a vengance and wasn't going away. I decided I needed to head for the house and lay down. I got about halfway there and the whole world went spinning wildly out of control and I half fell, half laid down on the lawn. Still felt extremely dizzy and started to get nauseous. Decided to try for the house again after about 30 minutes of laying on the lawn. I crawled about 6 feet and started vomiting like never before, I'm talking about nuking 10 square feet of lawn until I was cavitating.

My wife came home from work and found me lying in the yard, as she works in the medical field she took my vitals including blood sugar and all was in the normal range. We went to the emergency room where I was diagnosed with BPPV after some Hall-Pike tests, given a scrip for Meclizine and told to seek out the help of a PT to perform the Epley manuvers. After the first 24 hours the symptoms lessened to where they are about now, dizziness and feeling like a "bobble head doll" Tried the Epley manuvers off and on for the first week with no positive results.

Finally got in to see a ENT 2 weeks ago only to find out I don't have BPPV but Viral Labyrinthitis which is how I found this site (thanks Rich). I have been symptomatic for 6 weeks now and this is driving me crazy, I can't work, fly aerobatics or race motocross, all the things I really need for mental health. 2 weeks ago I didn't even know what VL was now I'm on a rapid learing curve and this site has been a big help, thanks to all who posted!

My symptoms are like being mildly drunk with a light headed dizziness, hyper sensitive hearing (I have to wear ear plugs when at my daughters vollyball games) and trouble focusing my vision after rapid head movements. These symptoms are constant and don't come and go. I'm not on any drug or special diets, ENT Doc and Flight Surgeon told me I just have to wait it out. I wake up every morning hoping this is the day I'm released from the VL prison.

Fritz


Hi all. I got my MRI results - everything came back normal. I plan to follow up w/ my GP in two weeks - maybe he can help me make sense of all this but in the meantime - I've taken matters into my own hands. I don't know but it is becoming clearer to me that the medical community is just as stumped as we are at providing answers for what we're dealing with.

Since my post - I researched the Net and decided if what I'm dealing with is a virus then my whole-hearted intention will be to strengthen my immune system. Thus, I have taken or done the following:

-Concentrated Acai supplements -Kyolic Aged Garlic Extract (Immune Formula) -Vitamin C 1000mg (2x/day) -Echinacea/Goldenseal -Drinking H20 -Drinking plenty of hot water mixed w/ honey & lemon or honey & turmeric powder or ginger (lemon alone is good too - its excellent for cleansing and flushing out the system) -Drinking mixed vegetable juices (ginger is great for treating viruses) -Keeping my meals light & healthy (though my apetite has withered these days) -Light stretching to relieve tension in joints and muscles -Contrast showers (hot and cold) to get my lymphatic system and circulation going -Standing/moving around on a reflexolgy mat 5-10 mins at a time to help with my balance/coordination (my father lent me this) -And meditating/praying (in the morning when i rise and at night before bed)

Outcome: Today was the 1st day in the last 2months where I felt a significant increase in my energy level. I'm no doctor but I know I feel a WHOLE LOT BETTER!! I'm also happy to report that one week after implementing all this - I no longer feel that heavy "pull-down" sensation and my head/joints/muscles feel much lighter and less fatigued. It's a work in progress but my father suggested I keep a journal in order to track my diet and my day-to-day changes/responses.....this way - my doctor can have something to reference when asks me about my symptoms.....we'll see.....and I'll keep u posted.....

Thanks kindly everyone and again, Keep Your Head Up.....T :0)


Hi everybody: Fritz, welcome to the site, and so sorry to have to put up with this bummer of an illness. We're here for you. Good that you got a correct diagnosis. All well and fine for doctors and everyone to tell us to wait it out, but I know it feels like heck while you are waiting. But honestly, most cases last around 8 weeks, and go away.A minority gets stuck with the thing for longer, if there is damage to the inner ear. I'm at the one-year mark, and have good patches, very good patches, and bad patches (usually accompanying a cold, etc.) Right now I am feeling better and plan to go shopping this afternoon. I pretty well have the same symptoms as you, the the spaced-out dizzy feeling has never really gone away, but on good days I can cope, I just feel a little strange and a little off. Bad days, I feel like a have the flu, and very dizzy. You do have to wait it out, unfortunately, but that's easier said than done. T. Good news about the MRI. I don't know why the medical is so baffled when we explain our symptoms. My chiropractor (who has Menieres) knew right away what it was. They are doctors for heavens sake. You will feel better doing the things you are doing. I went to a naturopath last year and she helped a lot.Don't know about the cold showers thought.Brrrr! Katie and Sandie, everything okay? Katie, are you pretty well back to a normal routine? Sandie, it sounds like you are only having blips. Good for you. A long time for you.

We're all in this together (how long am I going to have to keep saying that?)

Hugs to all, Maria


Hi Guys

Hi Fritz. Welcome to the dizzy site. Sorry to hear you've got the dreaded VL. It took the medical lot 3 weeks to diagnose me. I've finally got rid of it after 4 months. My eyes just shake a little now (myokmia). Your symptoms sound similar to what mine where. I felt drunk and really struggled to focus on anything and it was constant... like it will never end! But it will. I would really recommend head massage and drinking hot water with manuka honey and fresh grated ginger. It makes you feel more human. - Especially if you get alot of headaches?/ stiff neck?

Hello T...Good for you! For taking control of your own life. That's what I did and now the labyrinthitis has gone. You go for it! I did more or less exactly what you are doing. Serious amounts of fruit, vege, oily fish, ginkyo, ginger, vit c 1000mgs! the lot! Bull by the horns. I know for certain wishing it away just isn't going to happen. Try and eat. REALLY important. I struggled and lost a bit too much weight. Now 55kg and at 5 8' I feel and look a twig! If you can strengthen your system, you'll give yourself a fighting chance and you WILL nail it. Bravo :)

Maria... How are you!? How was the shopping trip?, Did you go in for some serious retail therapy? If not... Back to the mall with you! It will do you good! :)

I'm doing fine. Thanks for asking. Eyes still flicker a little.

Lots of love to everyone

Katiexxx


Hi Brenda; I had the same symptoms as you are describing; not very pleasant! For me it turned out to be caused by a combination of allergies and neck alignment. But evryone is different.Glad to hear meagan is doing better!finally!Hope you feel better sooner than later Brenda hope anna is still doing well. Rhonda


Hello all, Just thought id give everyone an update on my recovary. Its been just over 4 months now :-

The good - im able to walk furthur distances, sitting down now i rarely feel dizzy, able to do most things at home and a little exercise too! Concentration is better, vision is 100% Am driving comfortably, can go shopping although it can get hard when theres too much visual input.

The bad - When walking longer distances i still am a little unsteady, get dizzy and my glands in my neck seem to swell a little (anyone else get this?), the odd night when im trying to sleep my eyes start moving around involuntarily and makes it difficult to sleep, and at times i get a dizzy spell when i focus on one point for a period of time which usually goes once i change position or adjust myself. I still feel lethargic and tired though, but less so than before!

So i am seeing improvements every coupla weeks, and i guess thats what helps me get through the 'worse days'.

Good to see youve recovered scottish Katie...in 4 months not bad!

Maria? ive seen your posts on earlier pages on this site...how long have you had yours for!

Fritz - yep thats how we all felt at the start, itll pass, it really does test your patience, and cause you cant physically do anything. My biggest problem was how it changed my perception of reality to the point I couldnt think straight! That was the worst and scariest thing. Theres a thousand symptoms that can be atrributed to labs, it more less has a knock on affect on everything on the body, but one by one theyll go.

T - I was keeping a journal in the early days, its a good idea, especially when i just cudnt tolerate it and was worried it was something more sinister and theres loads of symptoms, but after when i started getting better and on with my life (not much of it btw) I stopped cause the symptoms started going one by one.

With me its been especially hard cause im epileptic, i am fully under control with meds, but when labs was at its worst it really did test my tolerance to seizures but thank God i was okay.

Anyways, tc everyone! keep on getting better until labs remains just a little hiccup long forgotten in the dustbins of history!!


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