Sharp Blue: Labyrinthitis comments, page 3

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I’m still amazed that my entry, “Labyrinthitis; or The Missing Week”, has spawned something of a support group. The community that has built up around it has now posted hundreds of comments. Indeed, I’m starting to think that it might be a better idea to set up a second weblog solely to host this community and to give some of the regular posters editorial rights on it. For now, though, I’m just setting up a third page of comments.


Rich -- Thanks for continuing the site for now -- I would have been a complete mess mentally without it. We all know that you did not intend for it to be a weblog -- thanks for making the effort to keep it going for now. I do think that it is a good idea to set up a separate site -- I don't have the skills to do that but maybe someone else does.

Nikki -- I have many of the same sypmtoms as you described as you began to recover from labs -- watching things that move (tv, cars, people, etc) makes all of my symptoms worse. I also figured out that anything that requires a lot of moving up and down or turning around a lot also is a problem -- such as cooking for a long period of time (the big meals that I tried to cook during the holidays really screwed me up) or cleaning. Bright lights, the sun, etc. are a problem, too, -- sunglasses help a lot. Earplugs have helped me considerably -- noises are a major problem (even minor noise).

Kate -- I can completely relate to your situation with your son -- I have two young girls and feel so pathetic as it has been so difficult to take them out -- even picking them up at school has been a problem with the hall noise, bright lights, etc. They also have to help me on walks and in the store -- I feel like their elderly grandma. I think that having young kids when you have a long-term problem like labs makes you feel even more vulnerable!

Overall I am feeling better over the last two weeks. I went and saw my internist last week to have her review all of the tests that were done in Sept./Oct. to make sure that nothing was missed. She was very sympathetic and thought that everything very serious had been ruled out. My MRI in Sept. showed sinisitus and fluid in my right ear (funny how my ENT never told me that my MRI showed fluid in my right ear!). She prescribed an antibiotic for the sinisitus as she thought that it might be prolonging my recovery from labs. She also gave me a steriod nose spray. We'll see if any of it helps.

I also wanted to mention something to all the women out there (sorry guys!) -- my symptoms become much more severe when I have my period (a few days before and during). I mentioned this to my internist and she thought it was due to the increased fluid retention that happens when you get your period. Anyway, if this happens to any of you -- you are not going crazy -- there is a logical explanation for it. I also know that Emma mentioned this problem on her website.

Sorry to go on for so long -- hang in there everyone! Mary


It's me again -- after feeling much better for almost two weeks -- I am feeling awful at 1:30 am. I woke up and immediately felt horrible -- my arm had fallen asleep, my stomach felt bad, my head felt bizarre, my whole body felt completely strange -- like something was wrong with my body chemistry -- I also felt like I was going to float away if I went back to sleep. Then I started to panic which didn't help. I don't know if it was something I ate or if I'm coming down with something else. It also happened to me earlier in the day.

Can anyone relate to this feeling throughout your entire body? It's hard to describe.

I can't believe that this horrible illness causes such bizarre symptoms -- just when I was feeling so much better.

Mary


Hi, everybody,

Mary, this illness does produce the strangest and the weirdest sensations in your whole body, not only in the head. While I am absolutely sure, that I am slo-o-oly recovering from my worst bout of labs, I still have from time to time that strange feeling of numbness in my arms. Often my feet are cold like ice while my head is "on fire". I put a heater on my feet, and a cold pack to my forehead. I start shaking and trembling, feel nauseated and exhausted. And at the same time - no real vertigo! Just this floating away sensation. I am not panicking any more of all this - I experienced it many times before during recurrences of the inner ear disorder. It is extremely hard to explain it to anybody, and most of all – to my loving and beloved husband. He thinks, that I am too nervous and exaggerating, that I am hypochondriac and overly concerned about my illness. He says, that my symptoms up to 70% are produced by anxiety. At least, he gives 30% to my inner ear disorder.

Keep your chin up, everybody.

Anna


Thanks so much, Anna. I really needed some support -- I felt so bad last night and still do today although for some reason everything is easier to take when it's not the middle of the night. I think that I may have a flu bug on top of a resurgence of inner ear stuff. Have you ever felt like you may have a high blood pressure problem? Sometimes I wonder if part of the bad feeling throughout my body is an increase in blood pressure. My doctor didn't seem to be concerned about it last week so I guess that I shouldn't worry.

My husband thinks that I am too nervous about everything too -- last night I asked him if I was going to drop dead -- I was only slightly kidding! :) But honestly these symptoms are the absolute worst -- I know that none of it is in my head especially b/c I've never been a hypochondriac about anything else in my life. When you feel horrible, you feel horrible -- it is not in our heads! No one else can understand them unless they have had a vestibular problem themselves.

Anyway -- I will keep my chin up and you and everyone else do the same.

Thanks again -- Mary


I have just sat and read all of your comments,and thank god that at last there is some one out there that understands !! I have suffered from labs for the past 3 years on and off. This last bout has last for 2 weeks so far, the kids think I'm grumpy, my husband thinks i'm a hypochondriac and my boss is getting fed up of me. Thank god for the internet ! I'll be trying everything all of you have suggested, because i really feel awful. I have read that the longer you have it the easier it gets, but i certainly don't feel this way. I'm on my way back to the doctor tommorrow, more stemitil probably.


Hi to all, in response to Anna's question, the doctor who treats inner ear problems is Dr. John Epley, Portland Otologic Clinic. He has a web site with valuable information. epleyclinic.com I sat next to a lady in the waiting room who had suffered horribly from VL and she said Dr. Epley helped her as she is back to 100% normal. I hope that my husband can get the same results. I will keep you posted. Carol


Dr. Epley is known for his the famous Epley manouver - replacement of ear rocks in BPPV patients. The manouver works different for different people, but it helps many of them. I just did not know, that Dr. Epley also suggests other treatments, like what Carols husband is going to have. I will definitely search for all the information about this on the Internet.

Anna


Carol -- Thank you so much for telling us about your husband's doctor -- I can't believe that it is the same doctor who came up with the Epley manuever. I am only three hours away from Portland -- I called his office today and may go see him if my symptoms do not clear up soon. The woman I spoke with said that I needed to see an otologist since they have special knowledge/training of the inner ear. I am so angry that none of the doctors that I have seen referred me to one.

One thing very interesting on Dr. Epley's website was how sometimes anti-viral drugs are given for labyrinthitis -- has anyone taken these?

Mary


Hi Mary - yes anti virals can be given for labyrinthitis as can steroids such as prednisone. They are not given out much in the UK - noone mentioned them to me when I got ill - but I think more widely used in USA. They are only potentially useful within the first couple of weeks of the onset of labs.

xxx


Hi Everyone,

I think I am recovered after 6-7 months of Labs. I had a bad cold last week and I was worried about some of the lab symtoms reoccuring, but, I seem to be fine. As a 50ish woman I am going through many normal "changes". There are alot of overlapping symtoms of labs and menopause. Most important though is I'm feeling good and like my old self again. Perhaps I should have a teashirt made that says " I survived and recovered from Labs".

I hate to admit this, but it's true. It takes time for our bodies to overcome a virus, and this one is really a challenge.

Everyone, good luch and keep your chins up.

Robin


Hi, everyone,

Robin - you've made rather good recovery time! I absolutely love your idea about the teashirt that says " I survived and recovered from Labs".

I have some thoughts about anti-viral drugs, I will post later tonight.

Anna


Thanks for the reply, Emma.

Here's a question for anyone out there:

It seems that with most viral illnesses there is a pretty standard recovery process -- you feel bad and then slowly (or quickly) you begin to feel better each day until fully recovered with few, if any, setbacks. If you think of it in terms of a graph, the graph line would steadily move upward until you are fully healthy.

Why is this illness so different? As I've mentioned before, I have had days (the last was a full week) where I thought that I was about 85% recovered only to wake up the next day and be back at 40-50%. Does this type of roller coaster ride with all of the symptoms signal that maybe it is not viral labs but a different type of inner ear disorder?????

Mary


Hi,everyone,

Mary is right - this illness is a roller coaster.

My understanding of it is the following. A virus is active only in the beginning on this illness. As time goes on, the virus is not active any more, because your body gets over it. But the damage to your vestibular system is already done. Here recovery begins, with ups and downs, because everything effects your vestibular system: weather changes, your body overall health changes, how much rest and sleep you have, hormone fluctuations, eating on time, noises, etc. (you can continue this list yourself). I know a guy in New York, who had a surgery for removing a benign tumor from his acoustic nerve (acoustic and vestibular nerves run extremely close to each other). He had the same pattern of recovery as all of us, labbys, do (same vestibular symptoms, and ups, downs, ups, downs). His vestibular system was damaged first by the tumor, and second - by the sugery. He has made full recovery, by the way.

Anna


[ women only section] Mary, I too have noticed that my symptoms seem to get worse when I am on my period but I have read through the comments on this sight and I dont think anyone else has mentioned it. I am relieved you said this as after feeling steadily better for the past few weeks I was worried that I was going downhill again.

I am now back at work after taking over 2 months off due to LABS. I am still only a shadow of my former self. I will do anything to get out of leaving the house. Infact the only places I go are work which is a few minutes away on foot and to the local shops. My family have been kindly doing my food shopping for me and I done most of my xmas shopping over the internet I know I am not doing mysef any favours but I feel giddy now even thinking about a crowded shopping centre or even having to queue to pay in a shop. It seems that when I'm panicking about these things happening they actually do begin to - has anyone else experienced this?

Nikki, be interested to hear how you are doing and if you are able to get out any more confidently than last time.

Arranged my first outing to a local theatre on Thursday and determined that i am going to take my 2 children there myself. If I am at home on the sofa I feel ok so I am going to try thinking that to myself - after all I'll be doing the same thind only somewhere else. I also find that apart from the gingko, chewing gum seems to help.Also I read that in moments of panic touching the roof of your mouth with your tongue quickly is supposed to help [obviously keep your lips together as you may look pretty strange doing this]. Good luck to you all and I look forward to hearing your success stories soon.


Hello,

I have posted but infrequently. I have had this horror for about 7 months now. From the onset I was put on Meclizine which is an antihistimine. That knocked me out so I was therefor switched to Allegra a lot less powerful but could manage. I have figured that it is time to get off the allegra. I am still dizzy but one of the side effects of the allegra is dizzinesss/fagigue and back pain. Some of the problems I have been having. This is just a test to see if getting the meds out of the system for a bit help me to not only feel better but finally FORCE yes force my brain to just deal with this and not use the allegra to cover it up enough for me to not fully conpensate. I will let you all know if this helps in any way shape or form.. I am tire of being tired. Went to a job with my boyfriend (he is a DJ part time) he could not leave to take me home, we were an hour away from his house so a taxi would be to expensive so I sent 1/2 of the evening sleeping in the car. Thank gosh he has a decent car for sleeping in. Am tired....so tired of this.

Emily


Hi everyone, I too have suffered from Labyrinthitis. Just a quick question, I started feeling better in decemeber, but now I have sinusitis and I'm sooooo afriad that I'm going back to square one with the labs....is this possible? Do I have to worry evertime I get sick now?? Also has anyone found that after sleeping all night your symptoms are worse in the morning?? I sooooooo appreicate any feed back

Laurie


I have posted to this site on several occasions. I got Labyrinthitis back on Oct 8th, back then I was not doing very well but I am doing MUCH better today! I've even returned to work. And I have some advice based on my experiences with this thing...

I URGE YOU, THAT IF YOU HAVE BEEN SUFFERING FROM LABYRINTHITIS FOR LONGER THAN 8 WEEKS TO SEEK MEDICAL ATTENTION!

If you are not 100% comfident, or if you do not have complete trust in the doctor you are seeing, or if the doctor is doing nothing to treat your symptoms, then get a second opinion, or a third, or a fourth, what ever it takes! It was only after seeing a third doctor that I was diagnosed as suffering from severe depression! Depression is very hard for a G.P. to recognise. I know! I couldn't believe that's what it was either, but now after only 4 weeks of medication and adult-councelling I am feeling normal again! I'm smiling, laughing, running, bicycling...and it's -14 degrees outside!

Good Luck, Get Well

Bruno


Bruno,

I hope you come back :) Were you suffering from depression all along?? was this the cause of some of your dizziness?? I'm extrememy depressed, so any feed back would be great

Laurie


Hi, friends

None of us are crazy!!! This is what our illness does to our minds. It is definitely impossible to avoid fears, panic attacks, anxiety and depression with this “dizzy monster” which attacks you so severely. The longer your illness lasts, and the more severe your symptoms are – the more chances to get all these really unpleasant psychiatric symptoms.

I am a very happy, active, accomplished, outgoing person with a loving family, lots of friends, very interesting and demanding job - in between the bouts of labs. I am a completely different creature during the bouts – total wreck physically and emotionally. I take antidepressants during the worst times of my bouts – nothing to be ashamed of !!!!! It helps our minds and bodies to get through the horrible symptoms of this illness.

Bruno, I agree, that you have to find the right doctor who would point out and treat your emotional state. Unfortunately, doctors can not treat the real cause of our depression - our ailing inner ears. But definitely, trying to improve your emotional health - is already a big step towards your recovery. By the way, this site, or other similar support groups, is the best "cognitive behavioral therapy" or "adult-councelling" fighting fears, anxiety and depression maybe even better, than medication.

Good luck to everybody.

Anna


Anna, Just wanted to acknowledge you. I have read your comments throughout these pages and have found them really helpful when I have been going through difficult stages of this horrible illness. You sadly seem to know this illness all too well and what I and others are going through. Are you all able to carry on with your jobs etc when you have LABS as mine was so severe I literally couldn't leave the house. Finding it really hard to get back out and about as a result. Anyone offer any advice? Keep your chins up!

Kay


Just a quick question....how long about Labs did you suffer the Anxiety and Mostly the depression??? You guys are alll soooo great :)

Laurie


Hi, everybody,

Laurie, Kay, I think , that everybody is different with anxiety and depression, but it hits almost everybody with this illness. As for me, I push myself, trying to go out to stores, or small parties from time to time. But not often. I keep all my strength for working as an engineer and researcher 8 hours a day, I feel exhausted after work.

Kay, - do not blame yourself for not being able to leave the house. You are not ready for this yet. I was in your situation for 6 months in 2004. And look - I am doing much better now! I ordered the newest book "Consumer handbook on dizziness and vertigo at Amazon.com" to be published in the end of February. I expect many helpful advices on coping with my illness. Great website - labyrinthitis.org.uk. Have a look at it.

Do not give up!

Hugs, Anna


Hi everyone,

Just a little something I've nocticed. the dizziness and and unsteady feeling has pretty much gone, but I have noticed when I wake from sleeping on my back....Oh Boy not a good feeling!!! Can anyone relate???

Laurie


Does this anxiety, fear and depression ever gooooo away???

Laurie


Hi everyone:

Laurie - when I wake up in the morning, I usually do not feel at all well -- it's sort of like I just spent a night sleeping on a boat at sea -- upset stomach, etc. During the very worst of this, I can only sleep on my back with my head elevated -- it feels like the wild spins are going to come back if I sleep in any other position.

In re to anxiety, fear, depression, I have felt all of these things b/c who wouldn't after feeling so horrible for months. I think that it is a completely logical emotional response to feeling so sick for so long with no effective treatment.

However, about three weeks ago, I had a week and a half where my body swaying/dizziness/stomach upset/brain fog/etc. was much, much better -- during this period my emotional state almost returned to normal -- I still felt a little anxious about having another episode of severe brain fog/lightheadedness but other than that it was a huge difference. So I think that once the physical symptoms let up, one's emotional state drastically improves.

Unfortunately, all of my symptoms have returned for some reason and returned with almost the same intensity as in the beginning (but without any true vertigo spins).

Let's all hang in there -- stay strong!

Mary


Hi, everybody,

Laurie - calm down!! You said - "the dizziness and and unsteady feeling has pretty much gone". This is the most important thing!!! Your mood will improve and the anxiety will be gone as you stay longer in normal, or close to normal state. Read Mary's previous post - I agree with every word of hers.

Mary - you said, that you had a really good week, but now you again have all the symptoms "but without any true vertigo spins". The absence of virtigo spins is also a positive sighn! You are still going towards recovery with high "ups" and low "downs". But the tendency it still slow-slow better and better.

Anna


Thankyou Anna :) I'm soooooo glad I found you all. I was truly beginning to think I was cracking up :)

Laurie


Hello,

It has been almost one week off of my medicines. I am actually doing better without them than with. I still am dizzy but a LOT less tired. And I acutally seem to have long moments where I am completely dizzy free.

I am wondering if my bran which was groged down by the meds before I stoped is now Forcing itself to deal with the damage. Not ignore it. I am hopeing that within the month I will be better most of the time.

I will keep you all posted. I am aware that this is my experience and I am not recomending someone get off there meds unelss they and there doctors are comphortable with this decision. Oh and there are moments when I am a bit worse but it seems to me that after the small spell of worse my brain is kicking in and I have a large time of better. Thanks.

Emily


Hi all,

Well , latest bout is passing, but still have have positional problems. Every time I look down or turn my head, whoa! I am so amazed, I walked into a meeting the week before last, holding onto chairs, and was recognised immediatley by another dizzy! She looked at me and said, 'oh, you 've got V.L.' She had it for a year, and was hospitalised with it twice. She recommended 'Pulsitilla', and I am going for that now too! The worse thing is that this latest bout has knackered my confidence. I cannot agree to go to any social gathering, or away on holiday, or anywhere. I am still pretty stuck to the house. Infact my (perception) of life outside these four walls is hell! Took last week off work for half term. Going back to work next week. Wish me luck, I only get 7 weeks hol per year, and I can only lie for so long.........

Best Wishes,

Kate


re. anxiety.

The thing that remains with me the most from all this is anxiety.

Although I feel pretty well most of the time, I still get anxious several times a day.

For example, (and I've mentioned this before)if I feel a bit dizzy/unbalanced for any reason, and it may be somehting as simple as walking onto an uneven floor, I feel the familiar fear feeling creeping into my chest. I do a lot of "self-talk". I say to myself: "Its only an uneven surface, its not dizziness, its ok, its perfectly normal".

If I feel a bit tired, or off-colour, or yes, if I am menstruating, I start to feel a bit dizzy and anxious. So it is also linked to a feeling of physical well-being. Its hard to tell if the dizziness is the remainder of the BPPV/labs/ whatever-it-was, or whether its purely anxiety, or partly from other physical reason as simple as some kind of allergy. After all, the neurologist did say there was no physical inner ear reason for me to still feel dizzy. Also, if I am reading about dizziness or thinking about it - I start to feel dizzy.

I am now unable to remember or distinguish what I felt like before this happened. E.g. this morning I bent over to pet the puppy and felt light-headed, then afraid. Quite possibly this action, before I had BPPV, would have given me the same lightheaded feeling, but now of course its all amplified by my being super-aware of it.

I do go places but of course without the same confidence (or rather the obliviousness of the healthy) as I used to. I always think: what if I get an attack if I go to this or that place? What if I cant get home, what if, what if, what if? I then have to self talk "ok I have my stemetil, I have my mobile phone and I can call a taxi". If I'm not doing the "what if" thing and concentrating on something else, I am fine. But usually I stick to familar places, or go with someone. As Kate said its "...knackered my confidence". I also think twice about social occasions, holidays, etc. I fear that work might fly me away on a job and I will get sick again and be alone and unable to return.

I think that the scariest thing about the possiblity of the BPPV/etc. returning is the fear and anxiety that goes with it. At the moment I feel that if it returned in the near future, I would still be too emotionally fragile to deal with it and I would crack up. I fear the fear.

Having said all that, before this all happened I was quite an anxious person who worried excessively and always was thinking of "what ifs", so this has really tipped the scales. I've tried doing yoga and relaxation tapes but am thinking of going to see a phsychologist anyway. I'm sure most people would probably be able to pull themselves togetehr a bit easier than a habitual chronic worrier so i wouldnt think that other people would have it forever.

Anyway, on the whole life is almost normal. I go to work and go to the gym and do most everything. So cheer up! Sorry if this sounds so negative because mostly my quality of life is excellent.


Oh Nikki you sound just like me...... I have always been a person who has delt with anxiety, but now its is 10 fold!!! I suffered from Labyrinthitis to which I believe is pretty much gone, but I think I now get the phycholocail ( soory cant speel) dizziness. I'm left feeling anxious and depressed. I what if, what if EVERYTHING to the point where I don't want to leave my house!!! this whole labyrinthitis has put my anxiety through the roof!!! would love to chat with you sometime :) maybe together we can figure this fear and anxiety out!

Laurie


P.S. My Doctor gave me Xanax (anti anxiety meds) also which really seems to help calm me down. Anyone else have their doctor talked to them about the anxiety from this and given meds for it? :)


Hi all - been away for a week but just read all comments. So gld bruno is better tho wonder if the depression was simply holding you back frm recovery from labs - you dont normally get inner ear type dizziness with depression. Often anti depressants can help a labs patient to recover because "compensation" needs serotonin to work.

Agree with anna's descritpion about the up and down nature of this and the fact that after a few weeks the prob is no longer viral.

CBT = very helpful. Am having it. I got mild depression probs about a year into this. Nothing severe tho and am better than I was. I cope pretty well.

Hugs to all xxx


Hi everyone:

Emma -- I have a couple of questions: it seems like you are very well-educated in re to the specifics of inner ear problems -- where did you get your info???

Also -- can you explain what you mean by "compensation needs serotonin to work"? Does that mean that exercising may help (isn't serotonin what is produced by your body when you exercise)? What is "CBT" - cranial therapy?

Interesting that you mention that depression does not normally cause inner ear-type dizziness -- I saw my internist last week for a physical --I'm sitting there looking sick and pathetic and sounding pathetic and she started asking me about feeling depressed. I know that my illness is not caused by depression although it is certainly "depressing" to feel horrible for so long and not be able to live a "normal" active life.

By the way, wouldn't it be nice to see doctors who had actually experienced these type of symptoms themselves? Trying to explain the intense brain fog is difficult -- doctors look at you as if they have no idea what you are talking about!

Hang in there all -- Mary


Hi Mary.

Have got my info from having this for 2 years and lots of internet and book research...

The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation.

Your doctor was prob meaning do you feel depressed as a result of this disorder - which is v common.

CBT = Cognitive Behaviour Therapy. It is mentioned on my website quite a lot.

xxx


Hi, everybody,

CBT = Cognitive Behaviour Therapy. I am sure it is very good for getting your confidence back - for all types of people - "anxiety" type and "non-anxiety". I am normally a non-fretter. I never worry about little things, even "big" things like money, or public appearence, or thinking "what people think of me". I am a confident type of person, (hope, that not arrogant, or boaster). But anxiety from dizzyness does affect me, especially due to recurrent type of my illness and its long term. So, I am actively in support of taking anti-depressants and getting CBT (if it is possible in your area).

Emma - "The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation" I have big doubts about it. No facts to support the theory.

Anna


Thanks, Emma and Anna. Emma -- I can't believe that you have been dealing with this for two years at such a young age -- it seems like you have handled it very, very well which means that you are an especially strong person -- remind yourself of that when things become especially hard.

By the way, I have spoken with someone in Dr. Epley's office a few times -- it was great to speak with someone who actually understands vestibular problems. She said that brain fog and mental processing problems were very, very common (the symptom that has always concerned me the most). More than once, she said, "I want you to know that you are not going crazy." I loved hearing that from someone with experience!

She also explained the body swaying that I have when my eyes are closed and I am standing up -- she said this happens b/c my eyes are now balancing my body (not my vestibular system) -- so whem my eyes are closed, I lose my balance since there is no focus point for my eyes. And this causes extra fatigue b/c my eyes/brain are working so hard to keep my body upright. Pretty simple explanations but again good to hear from someone associated with Dr. Epley.

Also, she said that one reason stores, driving, etc. are problematic is b/c of movement in your peripheral vision -- this can cause the increased dizziness/lightedness/spaciness when in supermarkets, etc.

Based on what I told her so far, she thought it could be any of the following: an irritable lesion left from a virus, chronic labyrinthitis, or a fistula (although she said that only 10-15% of people in these situations have fistulas). She also didn't rule anything else out b/c she said that one episode or symptom can change the whole diagnosis (and I haven't given her a complete history yet) -- that is why they spend a long time getting each patient's history b/4 coming to see them.

Anyway -- it takes a least two months to get an appt. with him and then you have to commit to being in Portland for two weeks b/c he does such extensive testing and analyses. But I am not ruling it out in case these symptoms continue.

Didn't mean to go on so long about that but maybe someone will find that info. helpful.

Hang in there everyone.

Mary


Anna - am only going from what my neuro-otologist has told me and what I have read in her book - That recovery from this can be hindered by anxiety and depression for whatever reason.

xxx


Hi, everyone,

Mary, thank you for the interesting information about talking with a person at Dr. Epley's clinic. How did you reach her? Just on the phone? Do they consult over the phone?

Anna


Emily Can identify with you completely. I'm now back at work. I've been taking betahistine since December but have found it makes me feel quite weak and energyless. Stopped taking it about four days ago and afraid the dizziness has returned although not half as bad, thankfully. For me the room is no longer spinning so at least I can leave the house - for me at the moment its a choice between whether i want to stay at home feeling weak with no dizziness or go to work each day with a little dizziness but generally feeling okay. Anyone found Betahistine a little overpowering energywise? Be interested to hear! Kay.


Hi everyone, I was hoping if I explained my story I could be given some insight as to this being labs or not. In September of 2004 I had a very bad case of Bronchitis which lasted a good 3 weeks...I had never coughed soooo much in my life. Anyway, 4 weeks later November 1st I was out with my husband and I put my head down to get something from my pruse and when I came back up....whamo!!! I got dizzy, hot and felt sick. I didn't get sick or anything, but I remember feeling funny as we rushed home. We got home and I was walking around okay and them wham it hit me again. My husband said it was a panic attack, because i do suffer from anxiety, but this was something I had never felt before. The rest of the night I was dizzy feeling and scared, but other than that I was okay. The next 2 days I was okay, not dizzy, but very anxious. That thursday I started to where I was dizzy all the time and Friday I had another spell to where I also felt faint.I had about three weeks of 24/7 dizziness. After that I felt very unsteady on my feet, but it was like if I had i bad day I'd have a good night, if I had a good day I'd have a bad night. it was like it would come and go. This went on until the middle of Decemeber. In Decemeber My anxiety went through the roof, but the dizzy unsteady feeling was gone. I still to this day when waking in the morning feel dizzy and unsteady, but once I get myself going I'm okay. I also noticed that sleeping on my back is a big no no because I get a little dizzy feelings. My Doctor says it was Labyrinthitis, but I'm really not sure and its driving me nuts!!! :) I have to admit something here also....I have become OBSESSED with the fear of dizziness! Does any of this sound like labs to you guys and here is the big question......once to start to recover, you can't go back to square one, can you??? I'm sooooo afraid I'm going to get dizzy and it will never go away. I'm wondering if at this point I'm creating my symptoms with the fear. Sorry for the long story, but you guys seem sooooooooo good with all this stuff :) Thanks everyone

Laurie


Hi all --

Anna, I just called Dr. Epley's clinic directly (the number is on his website). I first talked with the receptionist and then a woman who is the patient scheduler for out-of-town patients called me back. She asked me some questions -- trying, I think, to make sure that I really had a vestibular problem -- and explained the scheduling procedure.

I don't think that they do consultations over the phone -- she was just asking me questions to get a little of my history -- she did explain a few things to me in re to symptoms which I mentioned in my prior post.

She did mention that they see patients from all over the U.S. and other countries. Given your long history with vestibular problems, you may want to look into whether it would be worth the time (two weeks) and expense to visit him.

Hope this helps -- Mary


Hi, everybody.

I am having a very busy day at work (long meeting and technology discussion with our vice-president). Tired amazingly, but quite happy, that I can do this!!! Laurie - hang on. You said - "I have become OBSESSED with the fear of dizziness!" Not only you - it is in human nature. You are not weaker, than anybody of us. Three-four months ago I was exactly at the point where you are now (fearful!!!) Mary - thank you very much for the information. I will think of a possibility to visit (some day, may be)one of really good doctors. Kay - Betahistine - is it from antihistamine, to fight allergy, drugs?

Everybody, stay strong! We shall overcome...

Anna


Betahistine is SERC - an antihistamine but all vestibular suppressants are. Yes it too made me v zombie like but I onyl too it for 2 days. You prob know this anyway but vestibular suppressants delay not help, the compensation process.

xx


Thanks Em, could you explain a bit more about what you mean as I am a bit confused ( sorry for sounding a bit dim) !


Kay - prob best to read my website - see links at top of this page - see the VRT section and it will explain the nature of compensation.

Basically for compensation to happen you need to be active and to provoke dizziness. The medication sedates the system so it does not respond properly - ie: it covers up the dizziness - this hinders compensation as the brian does nt know of the problem in the inner ear.

Best way to recovery = no medication and staying active plus tailored VRT.

Hope this helps xx


Emma -- Just read the section on VRT on your website -- very interesting -- I should have read that part 6 mos. ago. I saw my ENT last week and he is referring me to a rehabilitation therapist -- first, he is having me go for another test (I forget the name of it). How did VRT help you? I know that I have not been active enough -- maybe that has slowed down my recovery.

By the way, your website is excellent - very informative and well-written.

Mary


Thanks mary - still doing VRt - no real results yet - takes a year or more to show results - am plugging away!

Is the test the dix hallpike? xx


Hi, would recommend reading above section to all. A friend of mine has been diagnosed with Labs this week. I can't believe the coincidence as I personally had not heard of it until I got it late last year. She was very depressed and worried that she had some more serious illness to do with the brain (like a tumour) so I have printed off the symptoms from Ems site and am going to take them round to show her tomorrow during my lunch hour. I think she thinks I'm just trying to make her feel better when I say that these weird assorted symptoms are all part of this. It was a huge relief to feel that I was past 'that stage' and on the road to recovery although I think it will be quite some time before I feel like myself again if at all!


Hi everyone:

Emma -- I have a quick question for you. On your website you talk about the "constant internal movement," "spinning in the head - marbles in head" -- has this ever happened to you when you are lying down and on the verge of falling asleep??

I get a very scary feeling sometimes in my head when I am lying down and starting to fall asleep or doze off or when I wake up and then am trying to fall back asleep -- it feels like my brain is going to spin/float out of my head and I am going to lose consciousness if I keep my eyes closed (but the room is not spinning).

Is this anything at all like what you have experienced?? Or anyone else out there?? It happened to me this morning (the first time in a while) -- it is a very bizarre, frightening feeling.

Anna -- I remember you mentioning that it would be nice for the doctors to give us sufferers a written list of the symptoms that we may experience. My ENT never did any such thing and whenever I bring up brain fog, he just attributes it to the general feeling of being sick -- even though I know that it is certainly not the same thing. I'm sure that he would look at me like I was crazy if I mentioned the symptom I described above.

Sorry for the venting -- take care everyone -- Mary


Hi, friends My long (sorry for that!) message will be dedicated to “working with balance disorder” The following message on this topic I found on one of the websites on the Internet:

“I have good days and bad days, but unfortunately more bad days. I have a headache everyday which ranges from mild to severe throughout the day.

However, work is the only thing that keeps me sane. I don't want to be blunt, but I am the sort of person who needs to be kept occupied with things I'm interested in, or I would prefer not to be alive at all. I struggle, I really hate situations where I have to stand up, or go to meetings or courses, but I do it. I found the main thing that holds me back is the fear of something bad happening while I'm at work - but then I realise, only a few times in my life has vertigo/dizziness ever really put me in an awkward situation - like when I was in high school and had a severe room spinning attack. I got through it, and if anythign like that happens again, I will get through it again. Getting over that fear of something bad happening is what made me realise that I shouldn't ever even entertain notions of quitting work.

Adam”

I am exactly like Adam!

A possibility to go to work, which I like very much (engineering and research), keeps me sane with my recurrent bouts of labs/BPPV/perilymph fistula. I feel accomplished when I do things, which I enjoy (my work, actually!). Like Adam, I have everyday headaches which ranges from mild to severe throughout the day. I hate meetings, lectures, but I have to be there from time to time. I absolutely cannot stand and talk at the same time, so I find a chair, or invite a person to go to a meeting room and to discuss things there. I ware earphones (Bose, Inc. noise- canceling technology) almost all the time, because mechanical equipment, loud voices and any vibrating noises make me dizzy and nauseated. My co-workers are very supportive, and my bosses are good to me, I think, because, I do my work decently (I hope so!).

My message absolutely does not imply, that you should jump on your feet and go to work immediately if you do not feel strong enough to do this. And do not feel like you are “a loser”, if you cannot return back to work right now!!! Everybody's situation is different and unique. It depends on the current status of your inner ear disorder: how you feel, will working 8 hours every day make your worse, how you can handle your kind of job right now. Maybe, it makes sense to wait, and take care of yourself. Remember, that the situation may change to “better” pretty soon, …. or unfortunately to “worse” (if you overestimate your strength and overstress your body and mind).

Mary - frankly speaking, I had very bad experience with ENT doctors in Oklahoma. I am thinking of going some day to Dr. T. Hain in Chicago - he seems to understand the problem of dizziness and all related symptoms. It is so sad, that we know more, than most of the docs.

Good luck, Anna


Mary - I have the feelings I describe on the site constantly - havent experienced the momentary feeling you describe when falling asleept - sorry. But im sure it is all related.

Also, Mary - I know what you mean about ENT's and list of symptoms but 1 thing I will say is..if you find someone v knowledgeable (I have seen the top neurotologist in my country) they will understand every feeling you describe from brain fog to spinning in the head - it is merely a question of finding the right person who sees countless inner ear disorder patients.

Anna - Adam has MAV - the headaches you experience could possibly be a sign of this - has anyone ever suggested you try MAV medication?

xxx


Thanks Anna and Emma -- and I'm glad, Emma, that you haven't felt the same feeling. You are right about finding a doctor who really understands these symptoms -- I need to search around more -- I'm not sure if I will be able to travel to Portland for two entire weeks to see Dr. Epley.

Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing. I think that I should push myself a little more -- maybe it will hasten my recovery.

Let's all hang in there!

Mary


hi my name is chad i woke up about 4 1/2 weeks ago from a 5 day drinking binge. i felt lightheaded 24/7 and i was very fatigued. i also woke up sweating and shaking some nights. i went to the doctors they gave me mri, bloodwork, etc. they said everything is fine. my family doctor then said i have labyrinthitis. its just constant lighthead, like a feeling that im not there completely its weird. i heard it takes 4-6 weeks to overcome. if i get like 9 or 10 hours of sleep im ok just lightheaded but if i get like 6 or 7 im so tired the next day. I want to have my social life back this sucks completely when will this go away. i think the only reason i feel alittle better is because im learning to deal with the lighthead constantly. PLEASE HELP ME??


Hi chad - look at my site www.labyrinthitis.org.uk and see if anything seems familiar. Labyrinthitis normally consists of different dizziness as well as perhaps lightheadiness - it is a dizziness only found with inner ear disorders - ot normally described as lightheadiness - see website.

Your problem could be liver related or something else - caused by the alcohol.

xxx


Hi, everybody,

Mary - "Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing". Thank you for the compliment. You said - "I think that I should push myself a little more -- maybe it will hasten my recovery". Somehow, I feel that for me, staying at home is worse, than going to work. I do beleive, it can make my recovery faster. But, it is very personal - nobody should stress his or her body way too much.

Emma - nobody prescribed me any MAV medication. Maybe, it will be beneficial for me. For now, I am going to try Sibelium, which I bought on-line without any prescription. I will let you know on the results.

Chad - read Emma's website, you will learn a lot from there. Maybe, you do not have labyrinthitis at all. And she is right - check your liver first. And for God's sake - stop taking alcohol -it is a terrible poison for you now!

Folks, stay strong.

Anna


well i just came back from the 2nd doctor ive went to see and he alos told me i have labyrinthis and i didnt say anything to him. he said it makes u very tired and lightheaded constantly. they gave me a mri and blood work and it came back perfect. i asked him about alcohol with my liver and that and he said liver disease wouldnt cause a constant lighthead for weeks and any other of my symptoms. but he said when u drink alcohol it makes u more tired and it did indeed. but thanks for the advise anyway.

chad


Have a look at my site anyway and see what you think chad. Its just that lightheaded isnt normally a way to describe labyrinthitis - its a different kind of dizziness -a feeling I had never ever encountered. You also usually have some kind of vertigo esp at the start. Gp's are nt v clued about about vestibular probs and I hate to say it but often overdiagnose labyrinthitis. If it continues, seek a referral to an ENT or Neuro-otologist. Hope you feel better soon xxx


PS) What are your other symptoms? x


I have posted here a few times, came down with VL 3/04 and still have some symptoms every now and then. Mostly get dizzy when overtired. 2 weeks ago I did something I thought I would never be able to do, I rode a roller coaster. Went with my daughter to Universal Studios. Everyone getting off the rides were saying how great they were, my comment was, you should experience it with VL. makes every ride 30X more. I manage my VL every day, stay away from caffeine as much as possible, stay hydrated, get rest... While I am not 100% I am managing. There was a time when I just felt I could not do anything. Getting off the recliner was a chore itself. Everyone stay with it, it will get better, you need to get firm with yourself and just say "this will get better and I will beat this" Best of luck to all.


Hi to all, just wanted to update you on the treatment my husband is receiving at Dr. Epley's office. He has been having ongoing tests to decipher which ear is involved. Usually one ear only is the problem ear, rarely both ears are involved. There are many people I have met in the waiting room and they all have similar stories to all of yours. One man in his mid 20's says that weather and barometric pressure really triggers bad bouts and also he does worse when the weather is cold. He cannot go in a grocery store and says because of this he has depression. The reason I am writing is I want you all to know that do not let any doctor convince you that you are mental or kooky in the head. Many doctors before Dr. Epley tried to tell me my husband was dealing with depression or work related stress. When a doctor does not know what is wrong with you rather than try to figure it out or send you to someone with the knowledge it is much easier for them to throw a prescription of Xanax or Valium at you because it masks the problem and it gets you out of their office. Their ego's are too huge to admit they don't understand inner ear problems. Back to Dr. Epley, he tends to take his time with the actual diagnosis. Their are many inner ear disorders with the same symptoms and something slightly different can help him diagnose the correct problem. I truly feel he is the answer and wish there were more doctors with his knowledge. If any one has other questions feel free to ask because I have lived with this problem since March 2003. My husband was off work for 9 months and is still not back to normal but doing much better. Dr. Epley offers long term solutions not just temporary relief. Bonine available over the counter does help symptoms and they have a form that causes less drowsiness. It seems to work well. But we are looking for a permanent fix. Keep positive and do not let anyone convince you that you are crazy. this is a real problem and there are real cures, you just have to find them. Good Luck. Carol


Hi, dear fellow sufferers,

I have great thanks to Carol - she is just AMAZING! What a supportive, attentive and thinking wife you are, Carol! Everybody, just look at her previous message. I printed it out and I will force my husband to read it very attentively.(I swear, I will!). He is a great guy, we are together for more, than 30 years. I had bouts of labs/BPPV/ (or who knows what it is) for all these years, on and off. I am usually an active, outgoing , just very normal person. But every time, when I am hit with this disaster, all I hear from my dear husband, are the sentenses like: "Everythings are your nerves!" (what?!), "You are obsessed with your illness" (but, who wouldn't, it this ailment takes your whole life out of you?), "You are prone to anxiety and depression" (complete nonsense in my case!), "You are hypohondriac - you should pay less attention to your pains and dizziness" (my dear darling, I really do not want you to experience what I have!), and finally "Stop chatting on the Internet with others, who have the same problems (he thinks, that all of us have mental problems). It has a bad impact on you" (total lies!) I am really angry with him and myself as well, because, under his pressure, I became almost convinved, that the most part of my problem is in my "nerves, anxiety, and depression". Actually, only recently, I began to be more strict and firm in defending my point, that my "nerves, anxiety, and depression" are all bad consequences of the real physical ailment (and a very tough ailment, by the way!). Carol, please, keep us updated.

Rich - what a good news about your vacationing in Orlando. I am also doing much better. Not ready to go to the gym, though.

Thanks, everybody, for being on this site. Anna


Wow.....what a web site Emma!!!!! What a fantastic job!!!!!! I have been dealing with this labs since the beginning of Novemeber, but was trying to convince myself that it was severe anxiety, knowing in the back of my mind it reaaly wasn't. My Doctor told me it was Labs, but I was toooo afraid to believe her and she also told me it would be gone in a few months..which didn't happen. I am getting better, I little more active, but my worst times seem to be at night and waking in the morning. The Fear and anxiety that I feel seems to be the biggest issues for me at this point. Question for anyone???? Is this something that gets progressively better as time goes on??? I'm sooooo afraid of waking one morning back to square one :( Also can showering and water getting in the ears make things worse??? Any feed back would be soooooo greatly appreciated!!!

Laurie


Hello fellow Labbies,

I got the labs in July 2004,now, I believe I am now 98% recovered. I am feeling like me again. It has been a long haul.

When I was first diagnosed I went to every doctor I could find. I saw an ENT, Neurologist, Allergist and my Primary GP ( I still liked him the best, at least he admitted not knowing about the labs.) I was told from the start that it could last from 8 week to a year or longer. I couldn't believe that this visus couldn't be cured. I had a MRI, CAT, all kinds of blood work, including one for Lymes. All negative, thank God.

This has been the scariest experience of my life. I had never been really sick before. My life was as good as I could ever remember it when I got hit with Labs. It came on so fast and was so dibilitating that I thought maybe I was dying. I will never take my health for granted again. I was out of work for about 4 weeks in total, and I when I went back, I felt I was accomplishing little more than showing up. The anxiety and total sense of helplessness is indescribable. At about month 4, was when the depression really hit me. I thought I was never going to be well again. The depression was caused from having a long-term illness and to make worse, I didn't look sick. I was getting better but, but it was going so slow that I couldn't see any light at the end of the tunnel.

I started slowly going back to the gym and getting more active. This web site helped alot, because I felt validated, and not so alone. I started working on a more positve attitude, it impowered me and I started to fight for my life back. I have been taking Ambien and getting more sleep than than before. I chose not to take an anti-depressant but, talk to someone and find out what is best for you. I am taking good quality multi-vitamins, B-Complex, calcuim and ginko. I am staying active, and learnin to accept that if the barometric pressure drops, I may get a bit dizzy again, but not like before. I am getting my energy and humor back. I missed not feeling like me.

Laurie and everyone out there - don't let this virus take over your life. Like the flu, it can't be cured. It has to take its course. Most of us are lucky, we won't have this for the rest of our lives.

Laurie, you will get better. The fear and anxiety is normal. Why shouldn't you feel this way when no one can give any concrete answers of when this illness will be gone. We have come to expect more from our doctors and forget that they don't have all the anwers and they are only human. (Not unlike our parents, they make mistakes and won't admit it.) ( My folks didn't want to hear about it any more, like it was my fault I was sick.)

Stay positive - this too will pass.

Robin


Hi Everyone. I'm sitting here in tears because I feel soooo hopeless and tired of feeling this way. Does this terrible thing ever go away???? I'm not dizzy 24/7 anymore. that stopped in Decemeber, but I now seem to have daily spells where I feel off balance. when lying down at night and first thing in the morning I get a dizzy sensation which seems to make me VERY anxious. Please tell me I'll get over this and be myself again?? Its now been 5 months and although there are improvments it seems to be soooooo small! I'm sorry I'm just rambling again because I'm sooooo upset and feel like nobody understands the daliy struggles of this beast!!! I did read emmas web page, but was just wondering does anyone else have problems with sleep and lots of dreaming ( more than the norm ) since this problem came about??

Laurie

Laurie


Laurie - v glad you liked the site. I must say the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover! I am still dizzy 24/7 2 yrs on!!!

By now the virus will have gone - it is the damage/inflammation that remains but the brain will compensate. The key is to stay active.

Yes this does get progressively better. You can get setbacks such as via a cold or illness but the dizziness will return to where it was before. Recovery is slow but it is happening even if you dont think it is.

Sing the guestbk if you want laurie - on the site.

Kp smiling! xx


• World is “warped” and very surreal. As if looking through the world through odd lenses. This feeling is always there. Particularly prominent in the dark. We liken this feeling to constantly looking through a video camera lense or a fish tank. World feels like a dream also.

i read the website and this explains how i feel exactly and that is exactly how the doctor said i should feel. its been exactly 5 weeks and i feel alittle better at times and then i have my bad times. i just hope this will go away. but how u quoted it up above it exactly how i feel EXACTLY... it weird.....but im also very tired....but all my other tests came back negative again so the docotors are almost sure this is what it is.....


Hello, guys

Laurie, hold on. I agree with Emma 100% on the following: "the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover!" About sleep and bad dreams. Do whatever to sleep more! Laurie, are you taking Ambien for sleep? If not, ask your doctor for it. It's magic - and no side effects. I am still taking Ambien at bedtime. Robin, who has just recovered from labs also takes it. Bad dreams - they can be terribly scary with this illness. Awful nightmares. I am still having them from time to time, I scream at night. Try to say to yourself - "Laurie, calm down. It was just a bad dream, not more than that...." As for anxiety and depression - if you are not taking anything - try to start Paxil, or Zoloft, for example. As I can figure out from Laurie's posts - she does need an anti-depressant medication!!! Laurie, do you hear me?!!!

Everybody, stay calm and be patient.

Anna


Hi Anna,

My Doctor has given me Xanax for the anxiety which does help me sleep and clam the anxiety that comes with the labs for me.....Other than that, thats all I take.

Thanks for all the reassurance everyone, I soooooooo needed it :)

Laurie


Just another quick question.....anyone very uncomfortable in the shower...I get extremely nervous in there, I fight with myself everyday :( Hope this doesn't sound to crazy, but I'm afraid in there

Laurie


one more thing ive heard alot of people brought this up when they are feeling this way am i correct???? i find myself straining looking at the computer after awhile...its like my eyes are straining and im squinting to look at it....


and yes i did have my eyes checked there fine...hahahah


Laurie

The nightmares I get - partly anxiety and partly inner ear. I also get vertigo at night if I sit up etc - the environment moves badly.

The shower - yes - v normal - its because its v enclosed so makes the motion worse for me - feels like a lift in motion or a box hanging in mid air.

xx


Hey everyone...seem to be having another tough day. I noticed that I don't really get dizzy much anymore, I do in the morning and at night mostly, But I always have like this funny feeling in my head, sounds crazy I know. Is this common with labs?? I have suffered from Anxiety for 13 years, but this Labs has given me anxiety to which I have never experienced before!!!! My Doctor has given me Xanax to help, but it doesn't seem to help the " funny head " feeling. almost like I could get dizzy at any momment, but I don't?? Wondering if its now my anxiety playing tricks on me. any input would be sooooo great :)

Laurie


The funny head feeling is v v common with labs and do u know when it occurs? When labs is ending and you are compensating and so you are not so much "dizzy in the head" but there is just a "funny feeling" like you describe. You are recovering!!

xxx


OH Em...you have me in tears over here!!! Is it really true that you get that sensation towards the end of Labs???? OH Thankyou GOD!!!!!! :)

Laurie


Yes - according to fellow survivors - yes! And Ilia (on my site) had exactly that when she was near the end. I have it on v good days.

Keep smiling! xxx


Just a message from a person who was unlucky to be sick with labs for a long time. When you are sick for a long time, sometimes you really feel guilty, like it is your fault. Exactly, like Robin said: "My folks didn't want to hear about it any more, like it was my fault I was sick".

Maybe, it is true for any long illness, but with labs I am just overwhelmed with this wrong feeling: "I am not optimistic enough, I am not pushing myself hard enough - that's why I cannot recover quickly." Everybody around see that you look "just fine" and your major tests come absolutely normal - so why are you staying at home, why are you complaining, why are you not "cheerful"? Sometimes you really can think bad about yourself, and you selfesteem drops down significantly. This "feeling guilty" is a very wrong and unhelpful feeling in our situation. It is OK to "feel pitty for myself", or "pitty for my family, that they have to deal with my illness" ... But no "guilty feelings"!!! It is not your fault, that you got sick!

Laurie - you can use a special small chair for shower. You can buy it on-line or in a medical supply shop. You will feel more secure sitting and taking a shower. I know that many people with balance disorders use it.

Chad - when you feel your eyes feel strained from a computer, or TV - immediately take a break and rest until you feel better. Unfortunately visual disturbances are very common with labs and other inner ear disorders. I could not watch TV and work with computer completely for about 3 months. Even now, I need to take 10-15 minutes breaks every hour from looking on the computer screen, because I start feeling dizzy. Scrolling up and down the screen - is the worst part.

Anna


Help -- I am having a terrible day. The last week I have felt so much better and then today has been horrible

Right now I feel like I am going to pass out -- every time I get out of bed/or stand up I feel like my legs are going to collapse and I have an overwhleming feeling that I am going to faint. My legs feel like they are sinking into the ground and the ground seems like it is at an angle. This feeling of faintness seems more extreme than before -- I really feel like I may lose consciousness but I haven't yet. My stomach is also a little off this am.

The last day or so I have had a feeling where it seems like a very bad vertigo episode may be impending but it hasn't happened -- I haven't had those since the beginning of this thing -- seven months ago.

The weird think is that my body swaying has been better lately -- usually when that is bad everything else is bad.

What is going on with me?????????????? Am I going to faint or have a stroke or something worse?

Sorry for sounding so pathetic and scared but I hate all of these feelings.


Hi Mary.....I too get the same feelings, that I will pass out and Yes I believe it is due to the labs!!! I was just saying the same thing to myself, I was having such a good week and then WHAM this morning I got hit with the feeling that I may get dizzy again, but I haven't!!!! Lets just chalk it up as a BAD day!!! We will get through this :) Anyone seem to fear going out of the house. I'm sooooo afraid!!!

Laurie


mary dont worry u will be ok its just a ear infection....believe me there is thousands of people that feel like u do your just worried .just sit back and watch tv and enjoy something and it will go away...and breath in a brown paper bag if u feel like your going to pass out it will calm u down.......


question for everyone...i know this sickness causes alot of anxiety...i start feeling all around my body thinking i feel lumps and stuff on my head and neck etc....is it just me or after being sick now for like 5 weeks i think im just driving myself crazy..does anyone else have this feeling.....i already hat a ct scan of my head chest etc...i think im just driving myself crazy cause ive been sick for like 5 weeks???????


Hi Chad,

I couldn't have decribed it better unfortantly!! I believe it the anxiety 100% I do the same exact things that your doing!!! I have been to the doctors numrious times, the Er thinking there is something wrong. I believe the Labs causes such extreme anxiety that we become hypochonrics. My doctor put me on Xanax ( anti anxiety meds ) just until I get through the labs because the anxiety was soooooo bad! I have suffered from panic and anxiety for 13 years to the point where I wouldn't leave my home, I got myself through that without meds, and lived a very normal life! This anxiety due to labs was just toooooo much and I was like a car in drive with the foot on the brakes just spinning in the dirt. This labs creates anxiety like I have NEVER experienced before!

Laurie


Hi, everyone,

Mary - you definitely had your BAD day yesterday. It can last for several days, unfortunately. Just hold on during these periods! Look, Mary! You did have a good week! These periods will become longer and “better”. If you get extremely nervous and start feeling, like your are passing out, or even going to die, that there is no enough air to breath, do the following. On the contrary: breath "shallow", or better into a brown paper bag (Chad is right). Speak to yourself constantly “Mary – calm down, it will pass, you can go through it…”. Miraculously, it does help to lessen the scary pressure on your chest and throat, and "numb" feeling on your face and arms.

For everybody! - Do not allow such a panic attack lead you to ER – it is useless. You are not having a stroke, or going crazy – it is an inner ear disorder, it manifests itself in such a weird and scary way. I have been in the ER three times with panic attacks caused by labs/BPPV. Only on my third (and the last rush) to ER I have learned, that it was “panic”. I found all the information on this condition. Never since that time I allowed this “extreme anxiety”, “panic” (call it “extreme fear”, if you like) beat me. It does not mean, that I do not have anxiety, fears, bad moods or hypohondriac thoughts. Of course, I do - with the recurrences of this dreadful illness. But, I think, I learned how to cope with it.

I wish, I could help you more, guys, and myself as well.

Anna


i know i just feel constantly lightheaded so feel the back of my head and left side is alittle bigger than the right side so i think there is a cyst and its pressing against my head and making me lightheaded and tired etc....im going crazy i just want this to end....im now a hyprocondriac and i never was before in my whole life...


the worst part is i just had a ct scan a month ago and they were like everything is fine....im a nutcase.....


Chad....I never was a hypochindric in my life. I always was healthy and felt healthy. I really believe its due to the extreme anxiety. I soooooo agree with Anna, talk positive to yourself and tell yourself ITS JUST ANXIETY!!!!! It is distressing, but not dangerous!!!! We will all get through this. On a positive note...Went to Walmart this moring for the first time in months :) Very nervous and felt funny, but I did it!!!!

Laurie


Thanks so much Chad, Laurie and Anna -- this is definitely a bad bad relapse with symptoms that I haven't had yet. Your advice is great -- I don't know what I would do without you all to calm me down.

I can't write anymore now b/c it is making me feel bizarre like I'm going to pass out.

Hang in there everyone -- Mary


OH NOOOOOOOOOOOOOOOOO, Now I'm scared to death!!!! I didn't know it can get suddenly worse for no reason?? I thought once you started to recover it was nothing but getting better and better????? :( You okay Mary???? I had a bad day yesterday too, but seem much better today. Have you been sick with a cold or something Mary???

Laurie


does anyone get the fullness in their ears and I have also noticed that I now puffy bags under my eyes that the worst in the morning???? The fullness is most bothersome when I bend down, but nooooo dizziness. Could it be that my ears are finally trying to stablize????

Laurie


ya my eyes are alittle dark under them and they get alittle blood shot also......dont worry its all part of it


Fullness in the ears, stuffiness of the nose, red eyes and heavy pressure on the forheard - right between the eyes - are the most annoying symptoms for me at this point. These symptoms are better, or worse during the day, but they are present all the time. Chad is right again : "dont worry its all part of it".

Mary - very often in front of the computer I feel, that I am going to pass out, or my head is floating somewhere. If I am at home, I just go and lie down and try to relax as much as I can (no TV, no noises, ask your family to be kind to you, and to respect your illness). But this "almost passing out feeling" in front of the computer often happens at work. So, I close my eyes, hold my head with both hands and try to relax all muscles on my forhead and shoulders while sitting. I am happy, that my kind of job allows me to have this time to compose myself.

Laurie - you did it - shopping in Wal-Mart!!! To all of you - Recently, just by acident, I met two peolpe who had all of these labyrinthitis symptoms (terrible, awful, unbeleivable, they said) for 8 to 10 months. For both of them these episodes happened just once in their lives and never returned back. There is hope!!!

Anna


Laurie - in response to the entry you left on my site - yes there usually is damage if labs continues BUT this does not mean you have it forever! The brain compensates. Damage basically means there are conflicting signals between each ear - asymmetry - this can be compensated for - do not panic!

Kp smiling x


Hello Labbies,

I haven't posted for 2 months now, previously been posting since July 2004 when I first came down with Labs. So I started the new year with new optimism and started back at the gym and walking over the hills near my home. Eating a really healthy diet and thinking really positive. Then one night I woke in extreme pain in my left abdominal side, pain it was so severe I nearly called the ambulance. Then it went and did't return for 2 weeks. During this period I still suffered from the ups and down of my fuggy head. When the pain returned it was time to visit my GP, the following week I really thought I was on my way out. I was scared, depressed and anxious. After several visits to my GP I was eventually referred for some scans. I have a Kidney Stone which will be removed a week from now via surgery. In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs. I think I know more about kidney's and the vestibular system than most GP's by now.

I do have one question if anyone can help. I will have to have general anesthesia for the operation, I am worried, has anyone else had this while suffering from Labs? My may concern is I'll never wake up... its hard enough waking just normally on some occasions with this foggy, fluffy head.

Also has anybody researched parathyroid disease?

http://www.parathyroid.com/parathyroid-symptoms.htm

The symptoms are similar to Labs with the exception of Kidney Stones which i now have. Once my kidney stone has been examined and tested they may look into this further. Although I'm pretty sure I have just had a run of bad luck getting Labs and kidney stone at the same time.

Thanks


Opps I had a typo above

In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs.

should have read...

In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is NOT helping my condition with Labs.


Just kind of curious....does anyone know if there is a symptom pattern to recovery with labs??? like at first you get the severe dizziness, then unsteadiness, foggy head. i guess what i'm saying is how do you know your near the end????

laurie


Hi everyone -- Thanks again for the replies -- today was a little better than yesterday but I can only sit at the computer for a second b/c it is still making me dizzy.

Laurie -- I have not been sick. I don't know what caused this relapse -- the day before it happened I did not watch what I ate very much -- I think that I had way too much sugar and salt which can really make things worse (at least I have found that to be the case -- more of a problem with salt than sugar). I also am going to get my period which always makes things worse (sorry to mention that guys!).

Also, Laurie and Chad, don't start worrying yet about having this long-term like some of the rest of us (and I know that at seven months I have been luckier than many others). From what I have read, many people do get over it within 6-8 weeks or maybe a little longer than that. You have a good chance of recovering within that time frame or before.

In regards to eyes, I almost always have very dark circles under my eyes and when my symptoms are pretty constant, my eyes look completely spaced out and strange. I think that this appearance is "normal" b/c our eyes are doing extra work keeping us "balanced" since our vestibular system is not working properly -- they are very tired!

Kevin -- so sorry to hear about your surgery -- you may want to consider reading through the posts at the dizzy lounge (you can google for the actual website name -- I don't have it) -- someone there may have gone through surgery with an inner ear condition -- if not, you can register for free (it's very easy) and then post the question.

Hang in there everyone -- Mary


Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears????

Laurie


Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears???? Semms like my ears opened up and they aren't as plugged now after that happening.

Laurie


Laurie - as for a pattern of recovery - I have asked many specialists this and noone knows BUT from knowing people with this lightheadiness is the final stage instead of dizziness as such.

The ear thing could mean you are gettng a cold - happens to me sometimes.

xx


i was talking to a doctor and i heard with this sickness i dont know if this pertains to any of u but kinda like what i have is that u can just feel lightheaded the whole time u really dont need to have any real dizzy spells...i get alittle alittle quick dizzy if i turn to fast but for the most part im just lightheaded....??? can anyone back me up...


Good morning, everyone,

Have no time for a long message, but just a short one - for Kevin.

Kevin - after I had my first six-months bout of labs/BPPV following hepatitis - A infection, I had two surgeries with general anesthesia (sorry, do not know the type of drugs used, they both were intravenous). I woke up after both surgeries, with my head feeling “funny”, I felt nauseated for a couple of hours, which happens after general anesthesia with the majority of “normal” (non-labbys) people. I did not have any bad consequences of general anesthesia in terms of having another long bout of labs. It happened only many-many years later, with another (hepatitis B infection), when I was again ill with bad - 7 months long - bout of labs/BPPV. This is my personal experience. Mary is right – look at http://p084.ezboard.com/bdizzylounge on the Internet. There are so many great people there with all kinds of experiences.

Anna


Hi Anna,

Thanks for sharing the experience, I'm sure I'll be OK just feel really anxious about general anesthesia, more so than the operation. I have very strange sleeping experiences especially on waking and just hoping that the anesthesia won't make it worse.

Thanks again.


Hi everyone....I have been having this problem with my ears feeling plugged up for 2 days now. It is driving me crazy!!!!! anyone else have it??

Laurie


I had NOOOOOOOOOOOOOOOO idea that xanax would slow the recovery process of labs? I was just reading it on the dizzy forum :( I take xanax for the Anxiety, didn't realize it was helping the dizziness also???

Laurie


Laurie -- I think that the feeling of your ears being plugged up is very common. I have this problem -- it comes and goes -- other ear symptoms that I have include a pulsating feeling in the ears, high-pitched whines (although not very often and it only happens for a very short period of time), and I am really sensitive to any noise. Emma's website gives a good list as does the dizzy lounge site. You're not alone.

Hope everyone is having a better day or at least able to hang there.

I just read a post on the Dizzy Lounge about when people increase their medications. I haven't taken anything for this except meclizine in the very beginning for about a week.

Do things like xanax and valium suppress your vestibular system -- I know that meclizine does?

Mary


How are you feeling Mary??? Was glad to see you post, hoping your feeling a little better :) Your in my thoughts

Laurie


Okay, Now I'm REALLY REALLY confused!!!! I was on the dizzy message board and was reading that If you have Labs for more than a few weeks its most likely some other inner ear disorder. But every other place I read the say that labs can last MONTHS????? Any feed back on this confusion would be great.

Laurie


Laurie - ignore the comment you read - I have seen it too - it is inaccurate. Labs CAN last months/years.

xxx


Thankyou Em....knew I could count on you for the right information!! :)

Laurie


Hi Everyone....Just another one of my quick questions :) Has anyone ever heard of or experieneced elevated white blood cell count due to labs. I was on a new message board and read some people saying how they had no health problems other than the labs, but had an elevated white blood cell count. I too in the beginning of my labs had a white blood cell count of 18000, which is high, but no fever or being ill other than the labs. My doctor chalked it up as being stress. HUH, wonder if the 2 Viral labs and white blood cell have anything to do with each other???

Laurie


Laurie, When I first started having vertigo I had a blood test (I thought it was a blood sugar thing) and sure enough, I had an elevated white blood cell count. However, the neurologist diagnosed me with BPPV. So its either a coincidence or a misdiagnosis.


A white blood cell would make sense at the onset of labs...but you'd normally have symptoms laurie... But yes I do think they are linked - the cell count and labs.

xx


Hi Em and Nikki,

That makes sooooo much sense in my case. Doctor couldn't figure out why my white blood cell was elevated. aside from the Labs I was healthy. Em, what do you mean bt having symptoms?? I had every symptom of Labs, but thats it. My GP knew I had the Labs, she is the one who said I had it.

Laurie


I also had elevated white blood sells level in the beginning of my labs/BPPV. "Stress" has nothing to do with elevated white blood sells level. The latter can be due to some kind of infection that your body fights with.

Anna


Laurie - I mean that along with a raised white cell count- you would normally have viral symptoms - tiredness, glands up etc xxx


white blood cell count up is definitely a infection.....not to scare anyone but if they were way way up then u should be worried about more severe stuff....but for now its not high enought to worry about that its probably a bacterial infection......that should be checked out........if the white blood cell count is normal its usually a viral infectioin...but im no doctor thats just my advise


what is bppv


Chad:

http://www.labyrinthitis.org.uk/bppv.htm

xxx


Hi everyone;

Thanks for the encouragement, Laurie. I'm still in the midst of bad spell -- hoping it subsides soon.

I haven't been able to drive or walk very well (except around the house) since Wednesday. My husband and I went on a walk yesterday and I got one of those intense fainting feelings halfway home -- mixture of feeling like I was walking on a boat and air with intense lightheadedness -- I thought he was going to have to carry me.

I know that things could be much worse -- but this experience is a nightmare!

Anyone who has had trouble walking or driving -- how do you handle it??????????????

Sorry for the venting -- Mary


Can soneone please explain what the difference is between BPPV and Labs??? What are the symptoms??? Are the symptoms the same or different??? Boy I'll tell you, the Dizzy Board has sooooooo many wonderful people there, But I think I will stick to this message board instead. For some reason, That Board scares me and makes me more nervous :(

Laurie


Laurie --

Check out Emma's website -- she discusses both. Hope you are feeling better.

Mary


In regard to BPPV - I have heard it has tendency to recur within five years of you getting it. Does this mean that it will be coming every couple of years (or less) for the rest of my life, or does it mean that I'll probably get a repeat and then it'll leave me alone? That'd be too much to ask...

Does anyone know if it can be sparked off by flying? I'm going to New Zealand in a couple of months (about a 3 1/2 hour flight from Sydney), am I likely to be dizzy all holiday?

I am in a bit of a bad mood because two weeks ago I almost felt like my old self and then last week I got a virus. Today, as I am sitting here typing I feel like the chair is tipping me forward.

I know I havent had "it" anywhere near as long as some people but I'm bl**dy well fed up with it. I NEVER used to get sick and now I seem to be sick all the time.


Hi everyone, I was just wondering.... I have always suffered from neck and tension headaches alot, but I seem to notice that when I get them now, Like right now :) I feel more unsteady off balance on my feet. Is this Common?? Its strange I have also suffered from anxiety for a number of years and one of my main symptoms is/ was an unsteady feeling. I'm wondering if the Labs is on the way out the door for me, but Now after suffering from this Terrible Terrible thing called Labs, If I'm more sensitive to the unsteady feeling and start to panic and worry about the Labs coming back. Does this make any sense??? I'm not really dizzy anymore, no actually I'm NOT dizzy anymore. When lying in bed this morning I put myself into a little test. I turned my head to the left and stayed that way for a few mins...no vertigo or dizziness, Then to the right..again nothing, then laid flat on my back...Nothing, stood up and looked up with my head all the way back...Nothing, bent my neck looking down at the floor, Nothing? Now in the beginning of my labs, I couldn't do any of this!!! now its just the unsteady thing that bothers me when I walk around...not terrible just bothersome. So what do you guys think??? I'm sorry if I seem a bit obsessive, but I'm a very very impapient person when not feeling well :(

Laurie


The unsteadiness could be left over remains from labs BUT there is also a theory that anxiety can hinder compensation from labs and excerbate the symptoms so the unsteadiness COULD be anxiety if u get me!

Im thinking it is a mixture of both - all you can do is relax lots and keep active so that compensation can complete. xx


hey everyone i have some good news...but i dont want to jinx myself...its been like 6 1/2 weeks now and i finally have my energy back...still alittle lightheaded but not as bad as i was weeks ago...i hope it is going away.........i see the specialist tommorrow to make sure it is going away and nothing else crazy...wish me luck IT DOES GET BETTER!!!!!!!!!!!!!!believe it or not


I get everything your saying EM....You are sooooooo awesume (((((big hugs for Em)))))

:) Laurie


Now heres the BIG question EM, My Doctor has me on Xanax ( anti anxiety Meds) Will that slow the process of compensating with the labs????? It seems to calm things down, including me :)

Laurie


Hi, guys

Laurie - you said: "no actually I'm NOT dizzy anymore". You tried any position possible, and you can not produce any of the dizziness! (I wish I could say that) You are really on your way to recovery. Laurie - just force yourself to be patient, everything is going just fine for you! Do not read too much on "dizzy lounge" board - it can be quite depressing not only for you, but even for a long-term sufferers, like me. As well as Chad - it looks like he is doing OK. Chad - congratulations.

I still feel dizzy in many of head and trunk positions. I really hate walking,let alone standing at one place and talking to people. But I learned to cope. Lately, I definitely feel more energy, and have had less headaches, than before. So, I am quite optimistic.

Mary - I completely understand what you mean by having not enough energy for returning from a long walk even grabbing on your husband's arm. It happens to me all the time. I think, that we overestimate our strength and ability to keep our balance for a long time. Especially, when we talk at the same time. I am very sorry,that it is happening to us. At the same time, these walking exercises is the best VRT you can think of.

Nikki - I will share my experience with flying later this night, or tomorrow. Too tired after a long working day, and I have to drive myself home (7 minutes of driving - quite a challenge for me - but I know, that I can handle it!).

Good luck to everybody.

Anna


I all, just thought I might bore you all with my experiences of various ear problems for the last 28 years! May 1977 I had dizzy spells and panic attacks, my doctor was sooo arogant he didn't care, left me in bed after three weeks and went on holiday, "dont call the surgery because the locum didn't know the erea and wouldn't come out" he said. well I did need to call the surgery and the locum did come out (I am 200 yards from the surgery) he got me booked in to the ent the next day, they diagnosed accute otitis media, I lost my balance for 6 weeks, couldn't stand up at all! Anxiety took hold and I was on diazapam for 10 years! had to get myself off them as no one seemed to be able to help, that was hell. 1984, had a mastoid operation on my right ear, 1996, had an operation on my left ear for a "radical mastoid", my eardrum was in "tatters" and had to be rebuilt my lft ear has never felt right since then. After the op I started having "drop attacks", scared me silly, sometimes they were mild and sometimes they were sooo scary I thought I was going to die! 2004, february, had my dealing with the dreaded labs! what on earth was this? spinning like I was on a fairground ride! had about four episodes of this during the year, went to the ent hospital in february, they told me it may last a week or two, went back to see my audiologist, she said "if I press the side of you ear, does it make you dizzy?" I said no "well its all ok then" duh! I asked her what was wrong with me for all these years and she told me I was suffering from "poorly compensated vestibular hypofunction". went to see my specialist at the ent in december but only got to see his registar, told him I had rocking all the time, felt edgy all the time and had also had four bouts of spinning labyrinthitis, he suggested it might be my thyroid underacting or maybe diabetes, he said that the labs was gone now,duh! "come back in six months" this is my ent department at the qmc in nottingham, as much use so far as a chocolate fireguard. I can see my specialist private it will cost me £120 for 15 minutes and £30 for any hearing tests I may need!! Luckily I found more informtion on the web, still have very bad dizzies and all that goes with labs, anxiety, bad sleep, nightmares etc , so I will just try to put this monster to rest myself, as hard as it is to do, and keep on getting my help from people such as you on this site and other sites, it helps much more than any doctor has done so far. I wish you all well and apologise for boring you all with this long tale of woe, good luck and good health to all of you.


Sorry, just thought to add, my gp thinks its because I am scared of going out! not any other reason, he wants me to see a therapist at the surgery. Guess I'm a lost cause eh? lol


Hello,

Has any other long term (im at 8 months) labs noticed that it is not when the barometric pressure is either up or down that you have worse times but when it is moving up or down. That seems to be the case with me. It is not a steady (bp) that does it to me but a moving bp.

Seems like getting off my dizzi meads has helped me quite a bit. I have a lot more better times and am not as groogy throughout the day. yay. Though I am looking forward to it being completely gone.

I do have another question. For some reason I was thinking that mabey the reason that some of us only have the 6-8 weeks is beacue they get the virus and then it heals. But for us long termers it seems like mabey there is a bit of damage that is permanant. Instead of the virus clearing out it left something in our balance system permanatnly broken and we therefore have to take longer and more effort to compensate beacue when the virus leaves the 6-8 weekers there is not compenation problem. The problem is fixed only permanant damage must be fixed or compensated.

Well that is my thoughts for a bit. Have a good one. :)


Emily - yes the theory is that the 6-8 weeker's have inner ear inflammation only - the rest have damage.

Laurie - Hmmm I THINK xanax is fine as it is not really a sedative BUT a way to check is search for it on the net and see if it says "sedative" -if it is - then it could hinder compensation BUT as far as I know all SSRI's dont stop compensation so im thinking xanax may b ok?

Mike - If you need info on a specialist in the UK who is TOP NOTCH for balance probs then tell me or emai me at my website (see external links). You are NOT a lost cause! Im thinking all you need is to find a Neuro-otologist.

xxx


Hi, everyone,

Mick - you said "Guess I'm a lost cause eh?" You are NOT a lost cause, I agree with Emma.I read all Emma's posts and visited her website. It looks like doctors at the top UK balance center know the subject very well. If possible, try to get in touch with them - that is the place where you might get help.

Anna


Oh, Emily -

About barometric pressure: It is also true for me: when bp is CHANGING - that is my worst time. When it already stabilized (no matter - high, or low) I feel better.

Anna


Hey everyone,

Okay here goes, I'm really trying to educate myself with this whole Labyrinthitis thing. I have looked at almost every web site, Love Em's web site, very imformative, and have also been on the dizzy board. I must admit I'm still very confused about something. I believe that on the onset of my problems it was most deffinitly Labyrinthitis, It came 3 weeks after a bad case of Bronchitis....Not kidding when I say bad. Not to be to personal, but I had blood in my urine and hemriods, to which I had never had in my life, not even after child birth, Thats how volently I was coughing for weeks so I can just imagine the pressure on my ears. Anyway, 3 weeks after that was over, the nasty vertigo started, but up until then I felt good. Anyway, they say the the norm for recovery from Labs is 6 to 8 weeks, anything after that normally means there is damage, But yet I also hear that it has taken mant people many months to get over Labs...See what I mean, doesn't make sense or I'm TOTALLY misunderstanding????? Can someone please shed some light on this for me and try and explain :) I would soooooo appreciate it!!

Laurie


Laurie,

Here is how I see it. The infection from your Bronchitis spread and moved to youre ear and vestibular system. From there the virus caused swelling and therefore the dizziness. For some people when the virus clears out of that area in the 6-8 weeks or however long then there problems are over and everything returns to normal for the lucky person. For some the virus does such extensiver damage that the healing of the vestibular area of the ear is never fully healed and permonately damaged. For thoes people they have to learn a new way to think.

Such as a person walks up a hill for 27 years every day to get to work. If the person lost there foot then they would therefore have to learn to talke that walk every day withouth the foot, and do everyting in a new way there mind so used to doing things one way it takes time and sometimes concious effort to make the new way work. Now it is not as exterme as loosing an appendage but forcing your brain to relearn something is extermely difficut.

Somtimes the pressure and pain are unbearable. And when your brain is relearning it takes some of you ability to concentrate on other things away. Er go the speach difficulities, the math hardships, the brain jump in thinking. And then the stress on your head and mind and tension from feeling wierd take a tole on your body an nerves. I have had severe pins and needles feelings in my arems and legs for a bit. But the tension in my neck due to constant thinking rethinking and worry are to blaem.

But thanks to the human mind it does eventually learn how to re-think. I have been this way since August 11 2004 and am about 75% better most of the time. I hope this summeer will help bring a 100%. But I have come to accept that it will take as long as it takes.

Hope this helps a bit.


Good morning,

Emily's explanation is JUST GREAT. I am still learning how to "re-think". I have done a big-big progress since the on-set of my fifth labs/BPPV bout in November 2003. I beleive, I am 80% (as an average)back to normal (with ups and downs, of course). I accepted my LIMITATIONS, I am aware, that my recovery will take a LONG TIME. But I am absolutely sure, that I will have great dizzy-free, pain-free and worry-free years in future.

Anna


thanks everyone for the support....i just went to the specialist and told me she knows ill get better soon...im about 85 percent...i have my energy completely back but im still alittle lightheaded..not as bad but still alittle...i hope that is a sign that i will be 100 percent soon...its been 6 1/2 weeks...im hoping it goes away in teh 6-8 week period...any advise on if anyone knows im getting to 100 percent for sure????


Chad - the high speed of your recovery is giving you a great chance to get rid on this illness completely - 100%. Good luck!

Anna


Hi Everyone......need some feedback. a month ago I had a sinus infection. ever since then I have had the problem with the ears feeling plugged and when I wake up in the morning under my eyes are all puffy. The puffy eyes goes down as the day goes on, but I have never never had this before. My ears don't hurt, they just feel plugged and I'm always trying to pop them with that opening your jaw thing :) soooooo what do you guys think???

Laurie P.S. I'm also dizziest in the morning with a strange feeling in my head, not that foggy feeling, something else wierd that I can't seem to explain.


ode to labs?

I may look alright on the outside, you might even think I'm ok, but inside I'm reeling and rocking, and it's with me all hours of the day.

My mind and my body are aching, and fighting this evil brings tears, the one thing that stops me from breaking, is knowing it's only my ears.

one day I'll succed being steady, and then I can turn round and say, look at me now, I can stand up, without even so much as a sway.

till then I will just have to fight, with all of the strength I can raise, I know that I will beat this demon, but it may take a couple of days!

I WISH!


i really liked that poem that explains it perfect...everyone thinks im fine...like i said im about 80 percent now i have my energy still getting little pains in the head and still lightheaded constantly but not as bad...i went out this weekend and drank and i felt horrible the next morning i think it set me back...(im a idiot for drinking but i thought it wouldnt harm it)...its been like 7 weeks im hoping it i will be 100 percent soon i heard it can take longer than this....my specialist said lab can take a few months i hope not im goign crazy not being able to go out with my friends...


is it me or does everyone else feel like we are going to be like this forever??????


Hi, everybody,

Chad - WHAT ARE YOU DOING TO YOURSELF? Forget about drinking with your friends for now. Alcohol is a strong poison for you now. You are asking: "is it me or does everyone else feel like we are going to be like this forever??????" It will not last forever. But if you continue drinking - it WILL last LO-O-O-NGER.

Mick- I liked the poem, except the last sentence "but it may take a couple of days!" Not true for us - unfortunately....

After 17 months of my 5th (recurrent) bout of labs, I finally started feeling MUCH more energy, feeling MUCH MORE stable while walking and standing. I am still having aches and pains in the ears and head, still very noise sensitive. I have to use Bose noise-cancelling earphones in noisy environments: at the meetins at work, in the restaurants (avoid going there very often), stores, or even at a home dinner with my family (when they are too exited and speak all at once). But I am definitely using the earphones less and less. My progress CONTINUES!!!

Everybody, keep smiling Anna


Hi everyone:

Chad -- don't drink at all until you haven't had any symptoms for a LONG time. I know it sucks -- I can't believe that I haven't had a glass of wine in over seven months -- but you have to be disciplined or it will take you longer to get better.

Anna -- very glad that you are doing so much better -- that is great news!!!!!!

The increase in my symptoms that came back two weeks ago hasn't left. I'm a little bit better -- but still can't drive at all or walk without feeling like I am drunk and on a boat out at sea, my brain fog came back, fatigue, etc., etc. I've basically been at home this whole time b/c I've felt too bizarre/dizzy/etc. to go anywhere -- fortunately my mom has been here for a week helping me out with my kids, etc.

I don't know what caused this -- I guess it is just the nature of the illness -- and I don't mean to freak anyone out -- I think that I just have an especially bad case of whatever it is -- it clears up some and then comes back almost as strong as in the beginning.

I liked that poem, too -- thanks for posting it, Mick.

Hang in there everyone -- sorry for the vent!

Mary


i learned the hard way im done drinking till i get better!!!!!!!!!!!!!!!!


thats really how i felt the whole time i never really had a dizzy spell...i just always felt alittle weird like lightheaded...ive been to 3 doctors and a ENT and they all told me lab....but dont have to get completely dizzy u can just feel lightheaded and like fatigued and like alittle off balance with getting a complete all out dizzy feeling where the room spins......Am i correct????


i meant on that last email last sentece WITHOUT getting a all out dizzy spell


THANK GOD! I am not the only one with this HORRID feeling. I am soooo sick of it. I had labs a couple of years ago and it seemed to take a long time to get rid of it. Now two years later (around same time of year, too) I couldn't believe that I had IT again. I remembered how long it took the first time to get through it and it makes me nauseated thinking of how I am going to endure it again. I am into the 5th week of it and have missed lots of work and LIFE because of it. It actually destroys your life. Sometimes I pass a cemetary and think of how lucky those people are! Scary I know. I have started seeing a therapist because of the anxiety and depression from this monster. After the first time I had labs I recovered gradually but still never felt quit balanced. I went to a hearing and balance center and they ran all those wonderful tests and said that because of the labs it has damaged part of the inner ear and I could get bouts of vertigo - ain't I the lucky one (or should I say we?!?) It is so easy to feel so down. I have been to the ER 3 times with this one since I keep feeling like I am going to passout constantly. I hear the same thing vertigo/anxiety. My question is - did the labs create the anxiety or the anxiety create the labs. I am going through a very stressful time in my life and am not sure which came first. I am considering taking lexapro for the anxiety/depression. I am a pill phobic too so that doesn't help matters either. I am desperate to get my old life back. I am sick of being a prisoner of my body and house! Thanks to everyone for their info and to the creator of this site. THanks a million. I no longer feel aloner. Gloria P.S. I know for a fact it goes away - mine was in remission for 2 years - the aggravating thing to me is that I can't believe I have it again. Knowing there is relief in the end should give me some hope, however, every day is such a struggle. I take antivert for the dizziness and ativan for the anxiety - i still get that weird head feeling though.


Hi Gloria,

I sure know what you are going through!!! I think ( figures crossed and praying to God) that my Labs is on its last legs. I often wonder alot if its Anxiety or Labs, since ALOT if not all of the symptoms of labs are the same as Anxiety. I got labs 4 weeks after dealing with a very Bad case of Bronchitic and I'm hoping it will be the last time dealing with labs. I soooooooooooo know that " FUNNY in the head feeling" its soo wierd that I really can't describe it. its not that foggy feeling that others talk about, just can't explain it. Chin up because you are not alone!!!!

Laurie


Hi everyone.....just a quick question. I have been reading alot on the web and ALOT of the sites are saying that a reaccurance of Labs is rare when it was due to a upper respitory infection.....TRUE OR NOT TRUE??????? PLEEEEEEASE say thats true!!!! :)

Laurie


I would have to agree with you. I had labs then thought it was going away and then had a bad cold and then it seemed like the labs was right back to square one again. I soooo hate it.


Hi, guys

Gloria - Sorry, that you have IT back. I know exactly how terrifying it is - to be OK for some time and BANG - this monster is back again. I would wish to cheer you up and to say, that this time you will get over IT faster (very possible!) and with more strength and confidence (for sure!). If you could do this once - you definitely CAN do it one more time!

I am sorry, that it is happening to all of us, but we are VERY STRONG PEOPLE - aren't we?

With great respect to all of you - fellow labyrinthitis sufferers. Hang on!!!!

Hugs, Anna


Hi Fellow Labbies,

Just to update you all... I had and operation a week ago, a Ureteroscopic Stone Removal from my Kidney. My main worry was how the General Anaesthetic would effect my Labs, well I'm happy to say it didn't. However during my recovery process, about 3 days after I felt so ill I thought I would die. Think the pain and my head were all getting too much. Well the pain has almost gone from the operation but the Foggy, Dizzy head is back with a vengence. I just want to get back to work and do normal things!!!

I'm getting so tired of fighing this condition... I got this Labs July last year and so I have made a mental note that it WILL be totally gone by July this year... this is my goal and I will achieve it. I am due to go to Vegas, Hawwaii, San Fran, and NYC at the begining of June for 3 weeks, and I want to enjoy it. I will get over this Labs, we ALL will get over it!

I started to write this note feeling gloomy but realised that it may make others gloomy, I don't want that, we don't need it. I'm sure if we ALL think positive we can fight this together. I'm thinking of ALL of you guys, I know what your going through.

Today I'm going to decide when I will be dizzy, not let my Labs decide for me ;-)


Great, Kevin! I like your attitude very-very much.

Anna


Do any of you take antivert or meclizine (sp?) for your symptoms? I seem to have to because if I don't then it seems my anxiety kicks in and I am in real trouble then. I hate to take it because it seems like all I do is sleep. Have any of you been diagnosed with Generalized Anxiety Disorder prior to labs? I know that it plays a big part in the dizzys fo me as well. Mine is more of a constant lightheaded feeling or like my head is the compass inside that little waterball that compasses have. I agree with the person who said that if it hasn't gotten better in eight weeks then it may be depression. Is lightheadedness a symptom of depression. I know that mine is anxiety alot too because I get really lightheaded when I have to talk to someone or go somewhere. It is amazing to me that it can knock you down so fast. I am used to being on the go all the time. I work, go to school, and have 3 kids. I am used to having lots of energy and now I can't go a whole day without a couple of naps. Sorry so lengthy.


Just wanted to say - alcohol will nt prolong this - it may make u feel a lot worse temporarily which is why I avoid it but it will not make your problem worse in the long term. Everyone is different too - some people feel fine drinking alcohol even if they have a vestibular problem. xx


Helllo Fellow Labbies,

I got the labs last July, like Kevin. I am pretty much over it , but when it rains or snows I still get dizzies, but much less intense. I take a low dosage of valium and it pretty much makes the dizzies go away. I think the anxiety is still my biggest problem, the anticipation of the weather change is making me nuts. It's been nine months for me, but as I have been told all along, it will slowly, slowly, slowly go away completely. I'm still fighting the depression attached with the disease, but there does seem to be a light at the end of this long horrible tunnel. I am still hesitant to take an anti-depressant, but I am open discussion. What do you all think. I have noticed that many if not most of the people at this site seem to be from England where the damp weather is a fact of life. Here in the States, we have had an usually wet couple of seasons. Is this a relevant?

Happy Spring!


Robin,

WOW, I was amazed at what you were saying. I live in upstate NY and we just had some snow over night. I had been doing pretty good the last week or so, but the snow came and I'm all out of sorts today!!!! Must be some link to it:) The Anxiety and depression seems to be the biggest hold on me as well, do alot of " what ifing" I'm soooo afraid of getting bad again that it makes me extrememly anxious and depressed. My Dr has me on Xanax which does seem to help alot. she also gave me a script for Lexapro anti depressant, but I'm also afraid to take it, sooooo here it sits!!! :) God you sound sooooo much like me!!! I have always suffered from anxiety, But NOT TO this degree ever!! Never had to take meds and it was always managable, Now with the depresssion....WHAMMO!!!!

Laurie


Nt sure about the weather thing...weather does not affect me in any way. If the weather effects you it may be that you have some middle ear issues or a more sensitive inner ear. You will compensate in time fully! xx


so Em i can have a few drinks when i have a few i feel fine the next morning but when i drink all night i feel horrible and tired for like 3 days??????


bruno how long did your last its been like 7 weeks for me but im still alittle tired after a long day of work and alittl elightheaded but still not 100 percent....????what do u think


Just a reminder. Gloria medicinses like antivert or meclizine do help you to not feel dizzy but they WILL prolong re-learning to re-think process. Take them at first. Then only if you have to.


Hi All, I'm still here, still dizzy on and off. A few things, To Chad. I have tried Labs with and without alchohol, and can report that a couple of glasses of wine in the evening has no bearing on my experience of dizzyness the next day at all. I still have good days and bad days when I have drunk the previous evening or not. However, I have tried a hangover on labs and that is a definate no no. However, at the great old age of 42, I find partying impossible anyway!!! (poor old thing). However, I do enjoy my wine and find it relaxing sometimes when I have had a particularly stressful day.

I am still dizzy on and off, but am finding it really difficult with the residual anxiety. It is hard, when you are having a conversation with someone at work, and all off a sudden you find yourself being'shaken up and down', like you have just got out of a lift. It is particularly fun, when you are a lecturer, like me, stood in front of a class of adult learners when it occurrs. I am finding the internal mantra I have to recite getting really tiring. I also find not 'thinking dizzy' helpfull,but tiring. I am trying to challenge it more and more in an effort to compensate, and that also is tiring.

Anyway, I thought that you may all like to know that I have a friend with labs. As a result of it, she had to give up work,and although she still suffers from time to time, she is feeling a lot better. Her enforced work break lead her and her husband to realise that they could survive on one income, and they are now expecting their much wanted baby! Is this the first labs baby we have heard of? I will let you know how she goes,however, when I saw her last week she was having a bad dizzy day, but said to me that it is mainly when she gets tired or hungry.

Also, does anyone else have a problem with small loos? I spend my life looking for disabled loos, as a normal sized loo will set me off, either spinning or going up and down!

Best Wishes to you all,

Kate


Hi all:

Kevin -- You have a great attitude, as Anna said. I know that I tend to write on this log when I am freaking out about something or really down in the dumps. I will try to be more positive!!!!!!!!

Kate -- What do you mean by the up and down sensation/like you are coming off an elevator? I started getting these weird sensation two weeks ago when I got out of bed one morning. I felt like the floor was at an angle and I was walking up hill and that the floor was dropping beneath me -- like someone had opened a trap door. Is this at all how you felt? It lasted off and on intensely for a few days (I could barely get out of bed) -- the dropping feeling has pretty much gone but the angle thing still happens.

Re Alcohol: I know that I can't even sip it with whatever inner ear problem I have and I know that it is not recommended for inner ear disorders like Meniere's, etc. based on info. I rec'd. from my ENT's office as well as a few books I have read. I don't know if it prolongs one's recovery but it certainly intensifies my symptoms. However, it sounds like many of you are able to tolerate it -- good for you -- someone have a nice glass of wine for me!

Hang in there everyone!

Mary


Kate - you sound like your improving which im glad about :-) I get the lift feeling - up and down - ground bouncing etc.

Chad - as I said it is completely individual about the alcohol - if it makes you worse - dont do it!

xx


Just wanted to say.....HAPPY EASTER EVERYONE!!!!

Laurie


Thank you, Laurie. And Happy Easter everyone from me too!


Hi everyone.....its been quiet in here?? Everyone okay??? Hey I've been researching Labrynithitis and have read in almost all the sites that its RARE for labyrinthitis to reocurre...is this true???

Laurie


Urm, not entirely no but dont want to scare u! It says on most sites on the net that labs lasts 6 weeks but that aint always true either! Generally once yoive got rid of it, you'll be ok, and if it comes back it'll be brief - with colds etc. xxx


From what I read and heard, Emma (see the above post) is RIGHT. Do not look at me - I am not a typical example. My recurrent, five bouts in 32 years, labs/BPPV/perilymph fistula (or whatever it is) inner ear disorder is due to at least two types of hepatitis viruses combined with doctor's ignorance and my stupid recklessness.

By the way, after 17 months of my latest very tough bout of the disease, I am about 85% back to my normal active life (still no travels, airplanes, gym, no parties with big crowds, less computers, no cinema going – too loud for me).

Hugs,

Anna


well i have had labs for 8 weeks.....i talked to several nurses specialist etc. they said it can last longer than that but the is the normal....im hoping it goes away completely soon!!!!i just learned to deal with it...


the only thing that really sucks is that if i go out for awhile at night im tired as shit the next day...it really drains u...but i know i cant die from it so i just try to live with it....TRUST IN GOD.......


Yes ur right - the norm is 6-8 weeks and im sure u will get better v soon and be one of the lucky ones as ur well on the mend! BUT it is not abnormal (unfortunately) for it to last a lot longer.

Hugs to all xxx


Chad,

You sound like you like a drink or four.

Your lifestyle sounds a little like mine was. I used to go out drinking a LOT and when I say this, I mean 1-4 times a week. All my friends are heavy drinkers and party goers, and its what I have done all my adult life (almost 20 years).

It would not be unusual for me to drink the equivalent of 10 drinks. Along with this I would "social smoke", but it also wasnt unusual for me to go through a packet on a big night.

At 38 I am starting to have few health issues. Last year not only did I get BPPV/labs/whatever, but I was also diagnosed with osteoarthritis in one knee (and the other one feels like it is going the same way). So unfortunately no more running - I used to be a keen jogger.

My gut feeling - and I have not been told that it would make any difference by any medical practitioner - is that the regular massive intake of toxins into my body on a weekly basis has caused both these problems.

This has impacted on my life in a few ways. While I am able to have a few drinks now, I am no longer willing (or able?) to go out bingeing like I used to. This has also led to some social isolation, as my friends of course keep on doing what they've always been doing. I have had a few angry feelings about some of them, as they have shown themselves to be drinking buddies and not the close personal friends I thought they were, but that's probably a good thing in the long run.

The main thing is, in some ways its been very life-changeing, but really much better for my physical health (as for my mental state...welll...hmmm...not really!).

I would have to say that while I kind of miss my carefree party-going ways sometimes, if its a choice between getting sozzled or having no vertigo, I pick the no vertigo any day. This is only my pet theory and my choice, but it could be worth considering.


Gloria,

I havent ever been diagnosed with Generalized Anxiety Disorder, but after reading about it on the 'net I would say I have had it all my life. I think its also coupled with a social anxiety disorder as well, as I get anxious about talking on the phone, unexpected guests, and feel very awkward in social settings - unless I'm drinking, hence the heavy drinking all my life I suppose.

Laurie, although I would say I am pretty much ok now most of the time, I do do a lot of " what ifing" as well. In fact, I have developed a bit of an obssesison over the condition and possibility of it returning. I think about it all day long pretty much, and that ain't right.

The other day in a shop, the floor was sloping and I mistakenly felt a like I was getting dizzy again. I got this huge wave of fear rising up in my chest and almost had a full blown panic attack, until I asked my friend if the floor was uneven and she said yes. I started to calm down then, but that's done it for me. I'm going to make an appointment with a psychologist tomorrow.


Well its been 8 weeks and 2 days and today and yesterday is the best i felt in weeks....im still feeling alittle spacey and alittle weak but not completely like i was....i hope im getting better it really is a slow process day by day of getting better......does it sound familiar to anyone??????


Sounds good chad - ur a lucky one! For me, its every 6 mths seeing a tiny bit of improvement nt day by day! Good luck! xx


Hi, guys

Nikki - you are right, that sometimes "drinking buddies" do not turn to be real supportive and caring friends. "A friend in need - is a friend indeed". Forget about them! Think about your health. I have heard it many times already, that alcohol may be destructive for your joints. I am not even mentioning the already impaired inner ears…. Chad – I also, like Emma see improvements only from three months to another three months, but not from day to day, or even week to week. You are doing just fine. Though, think carefully, what is better for you – to be healthier (actually, much healthier!!!) by staying away from heavy drinking, or to badly challenge your body by drinking with some “drinking buddies” who maybe do not care about you at all.

Anna


u said u have had it 6 months....are u still tired or just lightheaded...im still tired and not up to par as i was....but much better


From Anna - Chad - are you asking me "u said u have had it 6 months...."? I have had IT for almost 18 months. I am still not 100% back to normal. I get tired easily, cannot run, or jump, or drive longer, than 15 minutes. But my balance is MUCH-MUCH BETTER, than it was, say, 6 months ago, I have MUCH LESS lightheadedness, headaches are mild and bearable. I am doing a very SLOW, but noticeable PROGRESS.

Everybody, do not lose hope!

Anna


this website has been a huge help to me!!!!!!!!!!!!i know it will go away one day but for now i just wanted to thank everyone casue for those first 2 or 3 weeks i thought i was going to die......


and not to mention im in pittsburgh, pa and the weather is getting better and hopefully so am i...........im going to the kentucky derby and the preakness in baltimore in may....i hope its gone by then!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!it will be like 16 weeks at that time i hope its gone please pray for me!!!!!!!!!!!!!!


Anna,

I know this is off-topic, but where did you read about alcohol damaging joints? I have been googling "arthritis & alcohol", but not getting anything concrete.

Ah the sins of my youth.....

Incidentally, I had a blood test and I tested positive to allergies to dust, dust mites and german cockroaches. I suspect the old books - with their hundred year old dust - that I work on at work may have been exacerbating/prolonging my symptoms. I seem to remember reading ages ago that allergies were a risk factor for BPPV.

The Psychologist is booked for late April. I seem to have developed heart palpitations now which I know is stress related. Our new puppy chewing up everthing in sight and wrecking the yard isnt helping my stress levels either!

Hope you are all well.


Nikki,

Just several days ago I took my 84 year-old mother to a doctor - specialist in osteoarthritis in Oklahoma. X-ray exam showed, that my mother's right hip joint was severely damaged by osteoarthritis. There were two things, which the doctor asked her first of all: was she taking corticosteroids for a long time, was she consuming alcohol for a long time. She did not. The doctor said, that those were factors, destroying joints. As well as advanced age. Back in Russia, were I lived before coming the USA, medical personnel were also convinced, that alcohol damages not only liver, but joints as well. I never made any scientific search on this matter. Nikki, it is a good idea – to go to a psychologist. As for me, my GP prescribed me Paxil, which was a good choice for me. I was on Paxil for more, than a year – it helped a lot during my worst times. Now, when have I improved drastically (it is safe to say, that I am 90% back to my normal life!!!), I just quit taking Paxil with absolutely no side effects of going off it. I am still taking ½ a pill of Ambien for better sleep at night, because good sleep is gigantically important for people with inner ear disorders.

Chad – I am glad, that you are preparing to your normal life and making plans for future.

What a joy to finally start recovering from this exhausting and long illness! I know what this joy is like –the whole world is coming back to you.

Everybody, stay strong. We will win!

Anna


Hello everyone :) I feel as if I've gotten to know you all from reading your postings - they have been a HUGE help to me in coming to terms with this condition. Thank you everyone for sharing your experiences and tips! To indroduce myself, I am a 37-year-old mother of three (ages 8yrs, 6yrs, and 18mo.) and I first came down with labs last May. I had never heard of this before and was completely devistated. I just woke up one morning and fell flat on the floor with feelings of the room spinning. I was nausious, scared to death, and unable to move without falling down again - pretty typical first experience, from what I've read... Anyway, I went to the doc, was diagnosed with an inner ear infection and labs, given anitbiotics and sterroids, and sent home. I got better after a few weeks and assumed that was the end of it. Unfortunately, I now have it again. This time I knew what it was, so I was less scared by it, but it was no less debilitating. I didn't get the spins for as long, but I have a strong sense of pressure/fullness in one ear and a slighter feeling in the other. I also feel like I'm on a boat and can't walk without holding on to the walls or furniture. Lights sometimes bother me as do "crowd noises", which is unfortunate because I've been running a childcare service in my home for the past 5 or 6 years. (Prior to that, I was an electrical engineer working on computer control systems for about 10 years.) Needless to say, it's been difficult to continue working under these conditions! If it were not for the help of my mother, who has taken over the business for me for the past month, I would have had to close my business. This may yet have to happen, as she is getting tired of doing it everyday... Anyway, when this bout started, I went to my doc (a D.O.) and she again prescribed sterroids and sent me home. The sterroids (methylprednisolon) helped for a couple of days, but since you take fewer each day of the prescription, the effects wore off and the symptoms returned. I went back for another checkup and she gave me a prescription for another round of the same sterroids. Same result - OK for a day or two, then right back in the same "boat" as before. The third time, she instead prescribed a decongestant and an antibiotic saying I had fluid in my ear and an infection. I took these meds, but noticed no improvement at all. When I went back again, she resorted to a slightly different sterroid (Prednisone) which this time helped for about a day and then did nothing for me. By this point I was starting to get a bit worried (as did most of you from what I've read!). She sent me to get a CT scan (which was normal, I'm told) and scheduled me with a neurologist. I'm still waiting for that appointment, but in the mean time I insisted on seeing an ENT. The ENT gave me a hearing test (normal), checked for fluid in my ears (none) and diagnosed me with severe labyrinthitis from (probably) a virus resulting in permanent damage in both inner ears. He basically said I could get better in a few months, or maybe years, or maybe never. He said there is no medication to fix this. Needless to say, I was stunned! I thought, "I can't be like this for the rest of my life!". I was so upset, I was just stunned. I couldn't even think of any good questions to ask, so I just sat there mute. He did schedule me with a neuro-therapist who will do an "ENG" test and possibly some physical therapy to help me regain some sense of balance. This appointment won't be for a few more weeks, though, and in the mean time I get to see the neurologist tomorrow. From what you've all posted, I suspect the neurologist won't find anything either, but I figure it's worth a try. I've been experiencing the same symptoms you all mention - vertigo (mostly short duration now and not as severe as before), fullness and pressure in the ears, "foggy" head feeling, occasional feeling like stobe lights or someone flicking the frames of a movie (as someone aptly described it here), hot flashes and sweating, occasional nausea, and difficulty concentrating, sensativity to noises and light, extreme tiredness, fear of public settings, and of course anxiety and depression. I also have started getting a little bit of ringing in the ears, but fortunately not very loud and not lasting very long. But enough about me. Suffice it to say, I'm dealing with it as best I can, but it's not easy as I'm sure you know! I have just started trying the Mercurius Solubilis HPUS 15X that someone mentioned on this site (I found it at our local health food co-op as "Similasan Homeopathic Earache Relief") but I haven't noticed any improvement yet. (It's only been a day sofar though...) And I'm considering trying the Ginko, but am concerned about the safety of that while nursing - my youngest still nurses quite a bit! Do any of you know if Ginko is safe while nursing? I have also been reading about inflamation in general, and came across a book by Dr. Barry Sears called "The Anti-Inflammation Zone" which was just published this year. I haven't yet read the entire book, but the gist of it seems to be that chronic inflamation of many types is caused by our diet (high in simple carbs and "bad" fats) which causes our insulin levels to fluctuate. Over time, this type of diet brings on insulin resistance, which then causes inflation in all sorts of ways and obesity. (I'm paraphrasing, as the author goes in to much more detail, but that's the basic gist.) In any case, he says that through proper diet (low-fat proteins, low-glycemic-index fruit and veggies, no caffein, low salt, etc.) and taking fairy-high doses of refined fish oil, we can not only stop this process, but actually reverse it. He mentions heart dissease, MS, arthritis, and other common illnesses, and I suspect inner ear inflamation may fall into a similar category (although he doesn't mention it specifically). I'm wondering if any of you have tried this eating style and/or the fish oil supplements, and if so, if it helped you at all with the labs symptoms? I've blabbed enough for now, but I wanted to let you all know how much you have helped me already by letting me know that I'm not alone and that it's not "all in my head" (ha ha!). Your word of encouragement, and tips and suggestions, have meant a lot to me already. It really helps to chat with someone who understands what we're all going through! Thanks again for your support and take care :) Kindest regards, Jody


Hi everyone:

Jody -- I really feel for you with three children including a baby -- thank goodness you have your mom to help! Hang in there -- hopefully, your appts. with the neuro. and ENT will provide you with some more info. I do watch my sodium intake very carefully, as well as sugar, caffiene and alcohol (I don't have any caffiene or alcohol at all). I can say that I had some very bad episodes that I think were attributed to way too much sodium before I lowered my intake.

I finally decided to start a diuretic -- this is only my second day -- apparently, it takes a few weeks to see if it works. Has anyone else tried this? My MRI (way back in September) did show very slight fluid in my right ear (which is also the one that showed slight abnormalities on my ENG test). I have no idea if it will help at this stage but I'm going to start trying everything.

Hope everyone is doing better -- great news for you Anna -- so glad that you are at 90%!

Mary


I was struck by Lab on December 24. I am now, after 12 weeks back to work part time. I don't know how anyone can work 8 hours. I was thrilled to find this site as I was so worried about so many of the symptoms that I am dealing with. I haven't read this third site, but will!

Thank you for being here!

Kay


KAY how do u feel...i have had if for 9 weeks and it wont go away....i still get tired after doing something for awhile...and still feel spacey in my head...it sucks i have good days and bad days...it can last forever but it sure feels like it could.....


i meant IT CANT LAST FOREVER


does anyones eyes get blurry alittle for like a second or two frequently.....


u want to know the weirdest thing i had this spacey feeling (labs) about 4 years ago it lasted 4 days, i also had it about 2 months after that it lasted about 2 weeks....now i got it 3 years later and its been 9 1/2 weeks.......


Hi, everybody,

Chad - it CANNOT and it WILL NOT last forever! Maybe, it will last longer for you this particular time. I know many people, though, for whom it just stopped at some point of their lives, or it became easier, or much less debilitating with years.

Kay – you are working part time – it is already some progress! You will be feeling better at work, and you will be able to work more hours a day without being completely exhausted (believe me, it WILL happen!). Those first several weeks of part time working after five months of total disability were very tough for me personally. I am doing much-much better now, and I am working a full day. I even have some strengths to go to Wal-Mart for grocery shopping after a short rest after work. My movements are still slow and cautious, I ware noise-canceling earphones in noisy places, but I am able to do these simple things already!

Jody – my heart is really broken by you story. You have three little kids! Thanks God, your mom is with you!

You know, from the beginning of my long fight with this inner ear disorder, I was very reluctant to admit, that I got sick. I tried to convince everybody, that I am OK, that I can handle my situation. I tried to do everything that I used to do, with the same rate – fast, productively, energetically, joyfully. It was very stupid from my side not to listen to my body – one day my body just refused to obey my mind, I gradually became totally exhausted physically and mentally and I went strictly to bed for more, than five months. I just want to say: DO NOT REFUSE TO GET HELP from your family, friends, co-workers, doctors of all kinds (except those who advice questionable or risky treatments!).

Jody – about you question on low-carb diet. Yes, I have heard from people with inner ear disorders, that some of them are very sensitive to excessive sugar and carb intake. Some of them literally start spinning after they eat a piece of cake, or ice-cream, or a couple of doughnuts. This is the FACT! But how to explain this fact – that is the question. Either inner ear tussues become inflamed, or inner ear fluids are somehow effected – who knows… There is a good website dIzzilounge.org. (http://p084.ezboard.com/bdizzylounge) Many people on that site share their problems on inner ear disorders, ask questions and discuss possible medications, or diets to ease their condition. Visit this website – you will not regret. I remember, there was one active guy there – his name was Rick. He made a lot of research on how sugar and carbs can affect our bodies, because he personally stays away from these substances, because they make him dizzy and sick. I do not remember all the details about Rick, but there are many other people on this site who would definitely admit, that sugars and carbs would make their inner ear condition worse.

Hugs, Anna


Question to Jody - Did you have any bad side effects with taking steroids. My friend from Canada told my terrible things, that was happening to her when she was taking prednizone orally, ot interferon shots. I personally never was prescribed steroids and did not try them, of course.

Anna


Hi all,

I've been dropping in on this site since I was first diagnosed with labs back in November 04. Like most of us I've still been getting symptoms. However I've come to the conclusion that at some point my labs was actually cured. I only had the vertigo dizziness for the first 3 weeks. Since then I just got the light headed/walking on marsh mellows type feeling. The reason I'm still getting symptoms I think is anxiety. Whilst my labs was really bad the worst symptoms for me were the anxiety/panic attacks that accompanied the vertigo.

I've no doubt that the majority of you still have an inner ear disorder, but I think some of you might be similair to me in that the labs has actually cleared up but what your left with is an anxiety disorder. Check out http://www.nomorepanic.org.uk/ and look in the symptoms section. You'll be surprised how many symptoms you have in common with anxiety sufferers. I've realised that I'm now just suffering from anxiety, no doubt a hangover from the dreaded labs.

As for me, I'm now back at work full time. Back in January I could only last a couple of hours before I had to leave. Yesterday I did a 13 hour day! I've just come back from a skiing holiday. Took a bit of courage to go but really glad I did. I'm pretty much back to normal now. Couple of months ago I really couldn't see my life getting back to normal. Now it pretty much back to normal apart from the anxiety that occasionally rears its ugly head but I know what it is now so I'm starting to be able to control it.

Anyway I hope some of you find this useful. You will get your life back so hang in there!

Hugh


Hi all,

I can't believe it, I am going down with another cold, the dizzyness is becoming intolerable again. I really was beginning to feel better. The residual anxiety is awful. I am starting to think that this is never going to go ...8 months in, I had to leave a lovely dinner tonight that friends had cooked. My daughter said I was terribly rude, I feel mortified. I just had to get out, in my car, one destination..bed! This wretched virus has destroyed my confidence. I am starting to think that I am really post viral, good days and bad days, a terribly upset tummy when it strikes, wobbly knees and shakes. The worst thing is that I cannot stand and hold a conversation with anyone, or I start getting dizzy. Has anyone else experienced these type of symptoms, or is it time to go back to the docs and start again?

Kate


Kate -- I have experienced the same symptoms -- when my symptoms are bad, I cannot stand and talk with anyone -- even my kids and husband. I have to go get into bed and close my eyes. I think this is very, very common. My stomach will also act up and my legs will feel weak from time to time -- among other symptoms.

I also have had this for 8 months and have had the same ups and downs -- many times I thought I was on the road to recovery only to be back to square one.

After a fairly bad three/four weeks, I called my doctor and he is starting me on a diuretic to see if it will help by getting rid of excess fluids. I am on day three of that -- apparently it does help some people -- I hope that I am one of them.

I have tried to not take medications during this thing b/c I did not want it to affect my compensation. BUT those days are over -- now if I have a very bad day, I am going to take somethine to help me get through it (hopefully this will not happen very often). But I need to be able to function at a minimal level (pick up kids from school, etc.).

Hang in there -- we will get better!!!!

Mary


Kate - sorry u r feeling so rough - I know how it feels as have had flu and still feeling ropey...

Hugh - I must say the residual symptoms you describe are prob lab symptoms and nt anxiety - yes they may resemble anxiety but the fact is labs does not go away quickly and it is v common to be left with lightheadiness/spaciness rather than dizziness at the end of labs. I have a hard time believing the remaining physical symptoms are anxiety when you have had a labs problem.

The main thing is - ur getting better :-)

xxx


HUGH

And to add:

Labs can cause anxiety and this can linger after labs (but im nt really talking physically as in dizziness). The main thing is anxiety can hinder recovery from labs but the remaining symptoms of marshmallow feel/spaciness are FAR more likely to be labs related than anxiety. The fact is labs DOES end vertigo wise but then goes into a low level (or high) imbalance/motion feeling - for many. This is the v nature of it and I'll put my money on that your remaining symptoms are left over labs. In time - you should compensate fully. And in the meantime, getting the anxiety under control with CBT etc is a good thing as you will reach 100% quicker.

Hope this helps x


Hi, labbies,

I AGREE WITH EMMA!!!!

Of course, we all have a little, or a lot of anxiety with labs. But these leelings of imbalance and motion are definitely remaining physical symptoms of labs. I am sure 100%. I am not an anxious type of person. Also, I could closely watch my own self recovering from labs for five times (already) in 30 years. I always had the described feelings, they would get less and less intensuve gradually, and they would disappear with time. They are NOT total anxiety -but they CAN CAUSE anxiety.

Anna


Hi everyone.....I'm scared to death!!!! I have been doing really well with my labs, its semmed to have calm down alot, but here is the problem...I woke up this morning with a sore throat and chest congestion....does this mean the symptoms of labs will come back??? I'm sooooo afraid I'll go back to square one!! Please give me some feed back :)

Laurie


Laurie - try to calm down! Your fears go far ahead of your real situation. You said, that you were doing better in respect to your labs. You will steadily move towards your recovery, and even a cold, or flu WILL NOT REVERSE your progress. You might feel somewhat down for a while, but as soon as your body recoveres from the sore throat and chest congestion, your recovery from labs will continue. Do not be so much upset in advance. Keep hope, everybody. Anna


Thankyou Anna.....I soooo appreciate you taking the time to explain. It was just such an awful feeling in the beginning that it scares you, not to mention the anxiety of a relaps. Thankyou soooo much again :)

Laurie


Anna...i like to hear that advise when i first had it for the first 3 weeks i had real lightheaded attacks and stuff now 9 1/2 weeks later i have remians i think of lab....i am just alittle lightheaded and feeling alittle weak.....i guess this is the slow process of getting better??????????


it seems like i do something energetic for like 10 minutes and i have to sit down im tired as shit for a few minutes


Hello everyone - Thanks for the nice comments and support! It really helps :) Anna: Yes - I did have some side-effects from the sterroids, but they were minimal, with the exception of the crazy dreams. I would wake up feeling "spacey" and surreal from having the most vivid dreams of my life. Apparently, (as I found out from my doc later) hallucinations and/or vivid dreams are not uncommon! She told me I should stop taking the sterroids if I get those symptoms, but by then I had finished the prescription anyway. Anna: Also, thanks for the mention of the "dizzylounge" website - I'll check it out :) I've been trying to reduce my refined sugar intake anyway, but haven't yet fully tried a low-card diet. I really don't think the Atkins diet is healthy personally, so I don't think I could go on that kind of diet. The "Zone" diet seemed to me to be much more "reasonable" in that it didn't eliminate carbs, but reduced them somewhat and made sure that they were eaten in combination with protein to reduce the insulin spike and drop. Interesting that others find sugar and carbs may contribute to labs symptoms - maybe it's somewhat related to diabetes?

update: I visited a really good neurologist Monday and he did a much more thorough exam than the ENT did, and he was also much more knowledgable about labs and related disorders and explained a lot of things to me. He was also MUCH more encouraging that this can be improved. (yeah!!) He referred me to get several tests, ENG and "peripheral something or another" (I forget the eact name of it) as well as a complete blood count and thyroid check. He said that thyroid problems could also contribute to the labs symptoms. He also found that my heart rate was very high, possibly due to the high dose of Zoloft I've been taking. He thinks that could have effected my labs as well. I've been reducing the Zoloft (since you are not supposed to go cold turkey on it) and my heart rate seems to have gone down again. I had no idea it was so high! I wonder it that could have caused the "hot flashes" and "sweating" that I experienced occasionally? He prescribed Meclizine to reduce the dizzy/wobbly feelings, which I reluctantly tried for a couple of days, but I didn't find it to help with the symptoms at all. However, it did make me and my nursing child very sleepy! (which wasn't all bad, truth be told *g*) Does anyone else find this to be the case? The neurologist also noticed that I had a tendency to very slightly hyperventillate when I felt the dizzyness come on during the testing, and I also blinked a lot. Although he admitted the hyperventillating was very slight, he said that even that much could increase the dizzies. He suggested that I work very hard not to breathe too deeply when the dizzies start, and that I also try to keep my eyes open wide and not blinking during the dizzy moments. He said to focus on a stationary object, such as a picture on the wall, and sit down in a firm chair and press my body into it to make sure my senses realized that I was sitting and touching the chair. This can help "retrain you brain", I guess. Sofar, I have't noticed huge improvements from any of these techniques, but with practice they may start to help. I'll share more of what I learn from these other tests in hopes that they may help some of you too. Meanwhile, thanks again for the support and take heart from knowing you're not alone in this! (I sure do!) Kindest regards, Jody


so are u saying on that website that the virus only lasts 3-8 weeks but the after effects can last alot longer like what i have??????


jody i find my heart beating faster after i do anything also..i think that is common am i correct anna or whoever would know??????????


hi everyone what a wonderful site,just amazing how many off you there are.Thought i was the only one,mine started in october 2004.Woke up in the morning looking up at ceiling noticed that it was spinning slowly,closed my eyes for a few moments then opened again and it had stopped.Got out of bed felt like i was walking to one side,it went off after a few mins so just ignored it.then a few weeks later whilst driving i went in to dip in the road,and felt that i went sideways and back.So to the docs I went told him what had happened and after a few tests heart,bloodpressure e.t.c he said i had an ear infection.He gave me no medication as he is the old school type and wants the body to fight itself and sent me home.Then a few weeks later i noticed that if i was sitting down on ocassions and moved my arms i felt i was being pulled backwards and from side to side.I also have had all the other probs you all have had, except apart from the first morning I have not had the full spin just a slight movement.But all the time i am doing something i dont notice the balance,soon as i stop to relax i feel the feeling of being on a boat.I also have had Numbness,dreaded fear,freezing legs,like ants crawling up the back of my head,feeling like my ears are blocked,but you all have said the same and i really do feel for everyone of you because unless you have had these things happen to you,no one can comprehend what strange feelings we get.I have been married for 27 years and my wife looks at me like i am speaking a foreign langauge when i try to explain these weird feelings.I only noticed this web site last week,and since seeing all your comments I can now move on and beat this,knowing iam not the only person.Sorry to go on a bit but you lovely people all no how i feel,But my question is i have had neck ache and stiff muscles in my back ever since it all started,is this tension or is another one off its suprises.thankyou for listening paul. sorry for any spelling mistakes trying to do this as quick as i can.


paul i have stiff neck and that also its all part of it dont worry..


Thanks chad for your quick response and answer,I just really wanted reassurance from someone else,as it normally gets worse when I am really wobbly or have to go out. once again thankyou.


My contribution of symptoms:

Labs started approx 2 months ago after a weekend cold. had one big attack about two weeks into it where I woke up and the room was spinning. That lasted about 12 hours.

My symptoms have evolved over the two months. At this point I am spacey w/ a constant light dizziness. Other "fun" symptoms:

Labs get worse late in the day (more fatigue = more labs = more fatigue, etc.) Loud noises cause discomfort/chills (this started about 2 weeks ago) Feet feel heavy when walking (started about a month ago, has gotten better) Anxiety + headaches when trying to fall asleep (this anxiety reminds me of the feeling of coming off an antidepressant) Labs exacerbates my vision problem of having a lazy/wandering eye

My patience with labs is running very thin. The most frustrating thing about it is that you can't measure it day to day, because of unpredictable relapses, i.e. last week I had a couple days almost free of symptoms but then it kicked back on.

Today I am going back to the Dr. to see if I should/can be doing any vestibular rehab programs.

Good luck to everyone.


wnb let us know what they say


Paul – stiff neck and shoulders is a common symptom with dizziness and imbalance. It happens, because you try to keep your head straight upright to prevent dizzy spells.You try to keep your body balanced almost all the time. You apply gigantic efforts to these things, which you took for granted before, when you had a healthy inner ear. Your muscles are really tired and stiff, because of these constant efforts, often you have a heavy feeling in the legs, in the head and in the whole body. I understand exactly what you talk about. It makes a lot of sense for me. My husband of thirty years does not have a clue how poor I am feeling. He says: “Just relax your body, grab on my hand tighter and let’s walk faster!” If I try to do so, he has to carry me home half-dead after just a short walk. Now, after many months, I am much better with walking and all other “simple” things.

Jody - crazy and vivid nightmares as well as “hot flashes” always happen to me during the worst time of my labs bouts, although I NEVER took steroids, or Zoloft. I took antidepressant Paxil for a long time, but it never caused any of these symptoms. It is labyrinthitis, which is responsible - I know it for sure from my long and bad experience.

Anna


no one responded about the heartbeat....it beats faster or harder after not doing much maybe a short walk or something


Chad - my heat beats especially fast, when I am tired and fatigued, I am sweating like a pig. We are all very much stressed, anxious, tired, fatigued and weak most of the time with labs. Why would our poor hearts beat normally? All these symptoms come with labs, unfortunately.

Everybody - On the website dizzilounge, it was an interesting question and discussion. The question was - "What your body part is the most affected by your inner ear disorder?". Many people admitted, that HEAD is affected the worst: it means headaches, sometimes unbearable, heavy feeling in different parts of the head, "fullness and bloating in the head". Some people said, this is their STOMACH, because they feel so nauseated. Some people said - EYES and VISION, because they cannot concentrate their eyes, their vision is blurred, etc. Many people admitted, that their EARS feel really bad - fullness, ear pain, "watery" ears. Somebody said, that he,or she has real problems with stiff MUSCLES and aching JOINTS especially in the end of the day. And finally, almost everybody said, that their MIND was in trouble - poor concentration, bad memory, "brain fog". All these problems in different systems of our bodies are caused by a little thing in our heads - THE INNER EAR. Such a shame, that many doctors do not have a clue about these symptoms. They should be invited to have a look at our sites!!!

Anna


Chad and all:

I get the same heartbeat problem -- I am SO glad that you brought it up -- I thought I was the only one. It has been happening to me the last week especially.

My heart beats strongly and more quickly after even the slightest "exercise" -- like going up the stairs in my house -- how pathetic is that???? I am an ex-athlete but feel like a 90 year old woman. When my symptoms subside a little, then I don't notice the heart beat thing nearly as much if at all.

As Anna said, it is probably a normal reaction to everything our bodies are going through. Also, I have been totally inactive for the last month b/c of all of this and I'm sure that is part of it.

Also, my pulse throbs in my ears sometimes -- I guess b/c they are plugged up and/or the inner ear is inflamed so I can actually feel the throbbing in my ear -- any one else get this??

Mary


I forgot to ask:

Has anyone tried a diuretic? I have been taking one since Sunday. Wondering if it has helped anyone.

Thanks -- Mary


CHAD - do you mean my website as in the 3-8 wks thing? Basically the virus that causes labs is only there for say 3 weeks. 60% of people who get labs have inner ear dysfunction from labyrinthitis for 3-8 wks, 40% have it longer like me. It is the dysfunction (damage) which remains not the virus.

Also CHAD - the heartbeat thing is anxiety - I get it.

MARY - I have taken dieuretics for this but only when I am on my period as my specialist said it would help with inner ear fluid levels. It DID help with reducing dizziness during my period but it did not help the dizziness overall. A dieuretic will only help if you have menieres. Labyrinthitis does not cause excess inner ear fluid. But I cant remember your exact diagnosis?

xxx


My Doc (after having me wait an hour) is referring me to an ENT and an Opthamologist. His theory is that my wandering eye and labyrinthitis are very much enjoying each other's company, which is why labs is still sticking around.

FWIW, I have also had the throbbing pulse in my head a couple times since aquiring the labs curse. It didn't strike me as that big a deal b/c it happened once every blue moon before labs too.


Chad - about quick hearbeat - I think it can be anxiety as well, like Emma said, it can be BOTH ANXIETY AND WEAKNESS because of lack of exercises and because of over-stressed muscles.

Mary - I prescribed diureticas to me myself - just to try. I have been taking one pill per day for about two months. I did not notice any difference. Still, I am on my rough way to recovery. Probably, about 85-90% of my old, active, normal self.

Anna


That's interesting, Emma. My MRI (way back at the end of August) showed a small amount of fluid in my right ear (which is the ear that also showed slight abnormality on ENG). I was diagnosed with labs/vest.neuritis by my ENT.

Anyway, I should have tried the diuretic at the beginning but my ENT didn't push it and didn't explain how it could help. Now I am trying it. Too soon to tell.

Have you found that salt/sugar intake affects your symptoms?

I know that it does with Meniere's -- which I am beginning to think that I may have and/or BPPV (I'll save that for another post).

Thanks for the replies.

Mary


Thanks Mary and Emma, I feel like I am going around the bend! Day in, day out, this just gets so wearing. Before this started (last August) I used to drink like a fleetstreet hack, smoke, work all hours God sends..you have no idea. Now I am a non smoker, don't drink in the week at all and indulge very moderatley at the weekends, eat my five portions of fruit and veg, take suppliments and Ginko, sleep and try not to overwork.......and 8 months down the line I feel worse than ever! There is not a single day that goes by when this doesn't strike at some point during the day. I started work at 7.30 this morning, finished early at about three and decided to take myself off for a bit of well deserved retail therapy. One shop later, I was spinning and feeling so sick that I had to come home and sleep for 2 hours before I even had the energy to cook my tea. This is so frustrating. I supose that the positive is that I have had to change my lifestyle, but HOW much longer will I have to put up with this? Yesterday, I massaged my neck under my ears, and I could hear them 'squelching' inside my head! Do you think that this is still V.L.? I am starting to worry I might have M.E. or something like that. My friends tell me that I don't have an M.E. 'personality'. (whatever that is). However, I have never felt so neurotic in my life. Constantly fatigued, dread things I used to enjoy, can't stand crowds, small places, large places, loud noises. Feel like I'm cracking up. Back to Docs again next week I think. Thanks for all your support on here, and Emma and Illia, or I think I might have lost the plot by now.

Kate


Anna Thanks for explaining it to me.I have just made no asked my wife to read some of the postings to help her understand what we are going through.And yes chad my heart does beat a bit quicker,and boy after one of those weirds dream in the middle of the night wow.what i try to do is wash the car, even when dizzy because you can hold on to the car as you wash it just to get a little exercise.its not very pleasent but you must try to continue to do what your used to, as my doc who probably has never had this condition said to me. Chad Cheers, Anna God Bless.

By the way I did not mean wash the car in the middle of the night, even though it would mean I wouldn't have to suffer the boat sensation in bed.


Hello again :) This is such a great, active group! Paul: I agree about the stiff neck and shoulders - I find myself "stiffening" up when I try to walk so that my head doesn't move too much. The neurologist said that I should try to maintain a normal, natural posture, but how can you do that when you don't feel normal? Anna: I'm glad to know that you had the same symptoms (vivid dreams and hot flashes) without the Zoloft. I've been taking it for about 10 years, and never had those symptoms before, but assumed it was because of a relatively recent increase in my dosage. However, the neurologist said that with my little one still waking in the night to nurse, I'm not getting proper sleep, which can also exacerbate the labs symptoms. (Is there anything that DOESN'T make them worse?!? *g*) Kate: I hadn't even thought that the "squelching" I hear in my ears was related to the labs! I've been having that symptom too, and was worried that I might have a bit of TMJ. I get stiff jaw muscles as well, particularly on the side of my worst ear, but that also may be from poor posture from compensating for the labs. As to your feeling tired and dizzy after going to only one shop, I totally understand that! I can't even go to one shop! You're not crazy :) I wish I could answer your question about how long this stuff lasts, but I'm still trying to figure that one out myself. From what I've read, we're (hopefully) on the mend, since we're not having full-on vertigo anymore, but the "rocking boat" symptoms and others seems to last indefinately. For some folks, longer than others. The best info I have at this time is to get as much rest as you can, eat healthy, try to stay active (within reason) and see if the docs can offer any therapy to help you cope with the balance troubles. The only other thing I can suggest that really helps is reading the postings here :) Thanks again everyone, and stay positive :) Jody


Another thought : Kate: You said you are "Constantly fatigued, dread things I used to enjoy, can't stand crowds, small places, large places, loud noises. Feel like I'm cracking up." I think we can all probably identify with those feelings. Some of them are probably due directly to the labs, and others more to the anxiety and/or depression resluting from dealing with labs. Have you considered trying an antidepressant or anti-anxiety medication? Just a thought. also, what is "M.E."? Mary: I believe that I'm starting to discern a pattern that salt/sugar intake affects my symptoms of labs. I've only started noting it in the last week or so, but I'll keep watching to see and let you know. I do remember reading that for folks with fluid in their ears, eating much salt can be a problem. The diuretic should help, as should drinking a lot of water - counter-intuitive, perhaps, but I'm told that having more water in our bodies not less can help flush out excess fluid buildups. As to the Meniere's, do you have those "drops" episodes? From what I've read, that is very common with Meniere's. I hope you don't! I'm glad I'm not the only one who has been questioning my sanity lately :) For what it's worth, though, a counsellor once told me that only the sane question their sanity. In our cases, I find that reassuring *g* Take care - Jody


well its almost been 10 weeks and havent went way but have been feeling good these last few days......this Freaking stupid spacey feeling wont get the hell out of my head....i just wish it would go away this sucks....i feel fine other than this damn spacey feeling in my head.................


KATE..... believe me im 26 years old i was the same way...i love to golf, drink alot, (i dont smoke) go out all the time run on the treadmill lift weights.....all up till jan 31st i quit...i drank wed-sun woke up monday morning and havent been right since jan31st...its been almost 10 weeks....and im just spacey and weak....it seems like its getting better sometimes then it comes back again...its sucks sometimes i get so frustrated i want to just flip out...i know a lady at work that had it hers lasted 3 months....but i have never had the true spinning just lightheaded so i dont know if mine will last longer or not....im going away in may i hope it goes away...cause when i drink now im in bed the whole next day even if i only have about 6-8 beers. so i quit drinking until may to see what happens if it doesnt go away by then im going to say screw it and just drink..I FEEL LIKE SHIT NOW WHAT THE HELLS THE DIFFERENCE IF I FEEL DOUBLE SHITTY!!!!!!!!!!!!!!!!!!!!!!!


TO EVERYONE STAY OFF THE ANTIDEPRESSENTS THEY ARE NOTHING BUT TROUBLE!!!!!!!!!!!!!


Thanks for your comments, Anna and Jody, and everyone else. Thank GOD for this site -- last night I was ready to crack up -- I completely lost it emotionally -- my poor husband and kids!!! But then I went online and read some of these entries and felt much better -- even laughed out loud -- some of you guys are pretty funny which I find impressive b/c I can barely write anything that makes sense on here sometimes let only make a joke!

Should I keep taking this diuretic? I am very thin naturally (very high metabolism) and feel like I have been losing weight every day on this diuretic -- is it worth it?? After a week, I look emaciated. Did the diuretic make anyone's eyes sink in? Is that from water loss?

I also have no idea if my diagnosis was correct. I think that I was having symptoms of BPPV for the six to nine months before this whole thing started. A few times (during that period) I had very bad vertigo spins when I woke up for a few days but then it would go away and felt like I had the flu, etc. Now I am wondering if it is BPPV -- is an abnormality on your ENG consistent with BPPV?? or is that more of a labs thing?

Also -- I have alot of the symptoms of Meniere's but not hearing loss. No drop attacks but not everyone gets those -- nor does everyone get hearing loss.

It is all so confusing -- I just need a good doctor who takes the time to really listen to my history and gives me a thorough explanation for all of these ridiculous symptoms.

Mary


mary laugh out loud believe me anything that makes me laugh anymore is great...since our lives suck so bad right now....but this will be a great thing to look back on when we get over it..just think of how much we will enjoy stuff when this shit gets over with....it sucks.....i get tremors, heartbeat, headaches, weak...i got it all it sucks and thats the bottom line....EVERYONE THINKS IM CRAZY EXCEPT US ON THIS DAMN WEBSITE!!!!!!!!!!!!!!!!!!!!!!!!!!!


by the way who else gets tremors like me ive had them for like a 2 days.....but no one else can feel them there inside my body


Chad hang on in there,you must be positive it will get better drink is not the answer.I also stopped work on 21 jan and i am self employed money is nearly all gone.I am a 45 yr old man scared stiff of being on my own in the house when my wife goes to work.just in case something new happens,when at work I used to deliver washing machines sometimes to 1,2,3 floor flats with no lifts.Since getting this monster I have lost 60 percent of my muscle,I feel so useless and as weak as a kitten.this is what it does to you,after so many weeks with lab it makes you think your never be the same again.2 weeks ago if I did my exercise of closing my eyes and standing on one leg I would fall over in 2 seconds, now it has increased to 20 odd seconds so my brain is retraining so it must be getting better.So just keep telling yourself you will be ok. Anxiety is also a problem slowing recovery,but as I have since found out on this web site,we are definately in very good company. Good luck.


yes chad a sort of buzzy sensation in side but mainly in the morning when first get up.Also muscle twitching everywhere,and then this feeling like I am be strangled but this is me being anxious so doc says.


Hi everyone....just an update. was doing really well recovering from the labs, doctor put me on xanax ( anti anxiety meds) which for some reason has helped a great deal!!!! anyway, 2 days ago I came down with a head cold and now my ears are soooooo plugged up!! It is driving me NUTS!!!! I hate that feeling and now I'm afraid of a set back with the labs. No infections or fuild in the ears, but tons of nasal congestion....what do you think my chances are for a set back??? I'm thinking my ears will pop when I get rid of the nasal congestion....what do you think? I know it sounds sooooo stupid, but that plugged feeling is driving me NUTS!!! :)

Laurie


I get a good head buzz once in awhile. My biggest enemy is probably fatigue. Even like after eating lunch, the normal food coma becomes a lot less pleasant because of the labs.

My new theory on the "heavy feet" phenomenon is that your head is overly depending on the nerves in your feet to tell it how to balance (since it can't rely on your inner ear anymo').


Chad - EVERYONE THINKS IM CRAZY EXCEPT US ON THIS DAMN WEBSITE .!!!!!!!!!!!!!!!!!!!!!!!!!!! Pay attention to the following Jody’s notion: “a counsellor once told me that only the sane question their sanity”. A person who is really “out of his mind” would not question his sanity…. Refer you friends to this well-known postulate, first. Second, try to explain to your friends and relatives, that your inner ear (balance system) is affected by virus. It also affects MANY SYSTEMS of your body not directly, but through your brain. Most of the signals from the outside world go to your brain through your balance system. If the balance system is damaged - our brain gets distorted information from the outside world, and your brain is IN TROUBLE. It starts to work FUNNY, sending wrong signals to any part of your body. It scares you, and this anxiety aggravates these wrong signals even further…. Chad - I found out, that when you try to explain your problem to others makes you feel much better and to cope easier.

I really like Paul’s test for determining the progress of your brain’s retraining: “several weeks ago if I did my exercise of closing my eyes and standing on one leg I would fall over in 2 seconds, now it has increased to 20 odd seconds so my brain is retraining so it must be getting better.”

It is slowly getting better for ALL OF US. PATIENCE, PATIENCE, PATIENCE!

Anna


WNB - you wrote: "My new theory on the "heavy feet" phenomenon is that your head is overly depending on the nerves in your feet to tell it how to balance (since it can't rely on your inner ear anymo')". Your theory completely coincides with the scientific theory that people with damaged balance, become overly dependent on their other senses: on vision, or on the sense of "touch" in their feet (they call it "proprioception" if I remember the word correctly).

Anna


Yeah, the other thing that tipped me off to that is how much dizzier I feel if I sit somewhere with my feet off the ground (hence my brain is forced to rely on my inner ear again.)

I also think a lot of the anxiety and headaches I get late at night are the product of my brain and all it's neurochemicals being taxed more heavily then normal during the day.


Just a question that I was wondering about.....I have been on this board and the dizzy board. alot of people are on xanax or ativan which seems to help with the dizziness......does anyone know why this is the case???? Just curious :)

Laurie


WNB - yep as anna says - its a scientific theory and is why people with this become visually dependent also and experience visual dizziness as they rely more on their vision due to a dodgy inner ear.

Mary - no salt/sugar does not affect me. Menieres is v v definitive with full blown attacks, hearing loss and tinnitus. U get these or just constant dizziness?

KATE - keep smiling - email anytime.

xxx


Meniere's sounds like it is complicated to diagnose (like all other inner ear problems) b/c everything is symptom-based. I have read that not all people with MD have hearing loss, especially in the early stages. Also, sometimes those with it are mistakenly diagnosed with labs the first time it comes up.

I do have the tinnitus in a lot of different forms -- I don't necessarily have full-blown attacks -- it depends how these are defined -- from what I have read not everyone gets the drop attacks-- the symptoms can be less severe (thank god for anyone who has it).

Anyway, I hope to hell that I don't have it but am beginning to wonder due to my complete sensitivity to salt/sugar/wine/caffeine, the tinnitius, how my symptoms seem to get so much better only to return with a vengeance (a few times after eating way too much sodium -- Chinese dinner, etc.).

I have to do some more reading and see another doctor.

The theory about feet makes so much sense -- I feel much dizzier with my feet off the ground and it explains the strange feelings I get in my feet sometimes.

Paul -- you described it perfectly -- how you feel scared to death to be by yourself in case a new symptom comes up -- exactly my situation.

I can now handle my husband being at his office (unless I am feeling really bad) BUT when he has to go out of town I am constantly praying that nothing strange happens to my body.

Hang in there everyone.

Mary


well its 8 oclock on friday night and im going to bed 10 weeks later and i cant do shit lightheaded and just weak...would be out at a bar having fun...girlfriend is goign out all my friends but i cant cause tommorrow i wont be able to get out of bed.....it sucks...........


Hellooooo......anyone see my posts :)


Laurie -- Sorry that I can't help you with your Q -- I don't know anything about anti-depressants. Maybe you should post it on the dizzy lounge.

Hang tough, Chad -- I bet that you will have a rebound soon -- just sleep whenever you need to. I couldn't believe how tired I was when I first came down with this -- it is b/c your brain and body are working so hard to keep you upright. It is totally normal to feel exhausted.

What explains the "floor at an angle" problem? This was a new one that happened to me about a month ago -- I woke up and the floor looked like it was at an angle like in one of those rooms at a fair. When I walked, I felt like I was walking uphill. Anyone experience this???

Tonight, I walked out on our front stoop (which is at a severe angle which I had forgotten) and it almost sent me into a dive/spin -- I've been off the rest of the night. Help!

Hang on everyone!

Mary


Hi everyone :) I'm having a slightly better day today - yeah!! I was actually able to load the dishwasher without getting the spins, so I'd call that an improvement :) funny how we took things like that for granted before we had labs... Laurie - regarding your question about antidepressants, I couldn't say for sure since I've never tried xanax or ativan, but I've heard that an antidepressant called "Amitriptelene" (not sure of spelling) has helped some with dizziness. I believe it's useful for many disorders, not just depression, but I don't know why. My neurologist told me that an overdose of Zoloft could cause high heart rates due to too much seretonin, so maybe taking an antidepressant when you don't really need it for depression would boost your seretonin level similar to being in overdose. If your heartrate is higher, maybe that brings more blood to your brain and helps with the dizzies? Just a guess - I'll try to remember to ask the neurologist next time I see him. Hope this helps! Hang in there :) Jody


Another few thoughts - Mary - you mentioned needing a good doc to explain your symptoms. Have you been to a neurologist yet? I happened to find a good one, and he was able to explain a lot to me, which definately helped. If you haven't found a good doc yet, keep looking! I've definately learned not to tolerate a doctor who doesn't seem to be helping much. This labs stuff is just too much to take in stride, so having a doc who is attentive and helpful is a necessity! I used to tolerate a mediocre doc who didn't think it was necessary to explore every illness in depth, since I'm not big on taking meds anyway, but with labs it seems that it's important to delve into the depths and learn as much as possible, if only to preserve our sanity :) I find the more I learn about it, the more patient I can be with it, and the less worried and stressed-out I get when I have a bad day. Hang in there, get a good doc, and remember we're here for you :)

WNB: I agree with Anna and Em about the "heavy feet" feeling being a result of our sense of touch being used so much more. It fits with what my neurologist said about pressing my hands and legs into a chair when I get dizzy. He said it would help your brain learn to compensate by using your other senses more than before to determine balance.

Mary: I've never personally experienced the "floor at an angle" sensation, other than when I walk and feel like I'm on a boat. But just visually, I haven't noticed that. I wouldn't worry though, since it seems consistent with the dizzies and spins and all. Maybe it's just a milder version of the spins?

Laurie: I hope you're over your cold now. It sure does seem to make the labs worse when I get a bug. I suppose that's to be expected since our bodies are already very busy dealing with the labs, anything extra, like a cold, a hangover, etc. would just make it that much worse. I'd try a decongestant while you're down with the cold, since that can sometimes help with labs symptoms too. Hope you're back to feeling better soon!

Mary: You mentioned loosing so much weight with the diuretic. I'd be a little concerned about this since you're alreay thin. Especially if you don't think the diuretic is helping much with the labs symptoms. Check with your doc, but I'd think maybe the diuretic isn't doing you any favors.

I'd say "chin up" everyone, but that might make you dizzy *g* - so just keep your chin level but your spirits up. Just remember, some people pay a lot of money at bars and carnivals for these symptoms, and we get them for free! Jody


Jody,

I just had to write and say.... I LOVE YOU ATTITUDE!!!!!! :)

Laurie


Jody -- Glad you are having a better day -- thanks for the feedback. I went to a neurologist a couple months after this all started -- since he thought that it was all a peripheral nervous system problem (inner ear) vs. central nervous system -- he turned it back to the inner ear specialist. You are so right about getting a doctor that isn't in a rush and doesn't blow you off -- I've wasted too much time with my current doctor.

Mary


Hi Guys,

Just got back from the doctors........she seems to think that the dizziness, puffy eyes and plugged ears are due to my sinuses at this point. She thinks the labs is pretty much gone! She looked in my ears, said no fuild ( have a head cold) then she looked up my nose with that little light thing and said....NOW HERES THE PROBLEM!!!! she said that my sinus is swollen and packed. She gave me a script for Zyrtec. What do you guys think, could sinus problems cause morning dizziness???

Laurie


Laurie - dont know HOW she can say labs is gone as it is symptoms based...she simply cant say that! Sinus probs WILL cause labs to flare up.

Mary - there is a test for menieres - but cant remember it. It is actually said to be the easiest of the inner ear disorders to diagnose. A good doctor will know the difference between it and labs etc. Labs is nothing like menieres, the only thing that is simialr is the first attack. Doctors who diagnose labs patients with menieres know nothing! The sugar/salt thing I wouldnt worry about - everyone is different and any inner ear prob could be affected by these factors.

Jody - Ami (the drug you mention) is used to treat MAV - migraine associated dizziness - which can manifest itself v similarly to labs. Thats why Ami is seen as a good drug for dizziness but to be honest it is not helpful for inner ear stuff like labs - just MAV.

xx


Hi all,

Em - I know exactly what you are saying!!! I think my doctor was saying that because I seem to be doing soooo well, and the fact that my dizziness seems to come in spells. also I think because of the puffiness under my eyes, which goes down as the day goes on and I'm up and moving around. I really don't know why she is saying that...your guess is as good as mine :)

Laurie


Ah ok, got you. Well yes - you are def improving. Dizziness in spells is a sure sign! Dont be alarmed if the sinus prob stirs things up a bit - it will all be temporary.

xx


question the last few days ive been getting shakes like tremors in my body..like if i lay on my left side or right side at night i can feel my tremors...is it me or does anyone else have this feeling....i think it may be fatigue but who knows help me out please i was doing well????????????????????????


Chad -- I think that I have had something similar. It feels like the inside of your body is twitching -- it happens in my legs sometimes, and sometimes when I am just waking up it feels like it is happening in my neck/head. Completely bizarre feeling and sometimes I wonder if I am dreaming about it and then wake up or if it really happens. I can't really see the twitching but feel it.

On the dizzy lounge website, tremors is listed as a complaint among inner ear sufferers like us. Thank god b/c it is goddamn unnerving!!!!!!!!

Mary


thanks mary....my anxiety has hit a all time max...but i keep telling myself ive had this before years ago and the spacey feeling in my head no other disease really can make u feel that way and i have had a ct scan so i know nothing is wrong up in my head.its just this damn labs plays with my head and ive also had 3 doctors tell me i have labs but i still think crazy sometime...


Hi everyone....

What a horrible morning for me!!! I couldn't sleep all night because I was up coughing from this darn head cold, fell asleep around 4:00 and then woke back up at 8:00 to get the kids off to school.....I felt soooooooo off balance and anxious, NOT dizzy, but boy I didn't like the feeling I was having!!!! Why is this happening??? Is this head cold going to bring me back down with the labs.....I just want to cry!!!!!! I took a xanax which seems to be helping at this point, but I'm soooooo afraid all the coughing is going to bother my ears and make things worse. I can't take much for a cold because I also have a thyroid problem so I have to cough it out :(

Laurie


anyone else have tremors...ive had them for like 4 days now horribly when i lay down.....when i drinka glass of wine they calm down though so im thinking its nerves...but these tremors are so bad i can sleep i just shake in my legs arms chest stomach etc....


Hi Chad,

Yes I have those also... I believe its the anxiety due to the labs. It is the worst feeling. you feel like your going to shake right out of your skin. I actually had it this morning when waking up, but went and took a Xanax and within 15 minutes it gone and I'm ready for my day. It is just unbelievible the anxiety this labs creates. I think the anxiety is one of the last things to leave with this crazy virus with work.

Laurie


Hi all :) Hope everyone is doing better today! I had a good day on Saturday, then yesterday and today are not so good, but I hear it's supposed to rain here tomorrow, so maybe that's why...

Chad: sorry to hear about your tremors/shakes. That must be really unnerving! Even though the wine helps, I'd try to avoid any alcohol for a while at least, since that can make the labs symptoms worse. Have you considered asking your doc for an anti-anxiety medication? It might be worth a try!

Laurie: I feel for you with that sinus thing! How frustrating to be getting a bit better with the labs and now to take a step backwards! I suspect you'll feel a lot better once the sinus troubles are over. Your puffy eyes and dark circles are sure signs of sinus trouble - my daughter gets them whenever her sinuses are infected. It always goes away though, when the sinuses are better.

Em: Thanks for the info on Ami*-whatever. I wondered about it, but hadn't thought to ask the doc yet.

I go tomorrow for the ENG and a "Brainstem Auditory Evoked Potential" test. Hopefully those will either rule out something or find something helpful. I'm not looking forward to the testing, but it will be good to get it over with. The worst of it is, I'm not supposed to take any meds for 2 days prior to the testing - not even vitamins! I had been taking lots of vitamin C and others, just as an imune booster, but I guess a couple of days without won't kill me :) Wish me luck! Hope everyone is doing well today :) Jody


another thought - Laurie: You mentioned that you have thyroid troubles too. My neurologist is having me tested for that too since he said thyroid troubles can make labs symptoms worse or can even cause similar symptoms. Have you asked the doc that prescribed your thyroid meds if you might need to adjust the dosage? Maybe that's why your dizziness hasn't gone away as quickly as you'd like? Just a thought... Also, my neurologist said thyroid troubles can effect your heart rate, which also contributes to the labs symptoms (dizziness, hot flashes, etc.) Of course, so can the anxiety that often accompanies labs... It's all so inter-related, it's hard to know what's causing what!

On the subject of anziety, something I've found helps me is to focus on my breathing (to keep from hyperventillating) and try some relaxation exercises. If I'm not too dizzy, I close my eyes and imagine I'm lying on a warm beach, listening to the waves. I even have a CD of wave sounds, which can be particularly helpful when I need to relax and sleep. There are lots of relaxation techniques, but one of the ones I like best is tensing and relaxing various muscles starting at the top of my body and working my way down. This really helps me relax my neck, shoulders, and even my jaw, where I tend to carry a lot of tension without realizing it. Hope this helps! Jody


mine last like 3 days now straight but like i said wine calms it down alittle so it may be anxiety but im like shaking sooo bad its unreal especially at night when im going to sleep...


Hi Everyone,

Hope you are all having a better day. I first posted on March 04. Had LABS for 8 months. This site was and still is a blessing. I've been 90% improved for 5 months. What a relief!

I still take Ativan,( an anti-anxiety med.)daily. I make sure to drink plenty of water throughout the day. I'm a 50 year young retired special education teacher who is currently a full time caregiver for my housebound mother who suffers from Parkinsons. She had balance problems lead to wheelchair travel only. In comparison, my condition was and is so much better.

With the Spring pollen, my balance is slightly off again. And last nite I had the tremors also. I too think it has something to do with the fatigue from the visual strain.

I sincerely hope for the best recovery for all. Thanks again for being there!

Antoinette


reason im really nervous is because it hasnt quit in like 3 days really


sorry for another sentence guys.....do u shake in your legs arms chest etc...i do.


Chad --

It seems like others have experienced similar tremors based on the last few entries -- so I don't think that you should worry about it -- BUT since it has been going on for a few days I would just double check with your doctor if you haven't already done so -- just give one of them a quick call -- it will probably make you feel better to have spoken with them. Is it like the chills that come with the flu or a fever?

Hang tough -- Mary


yes basically the tremors are horrible....im going to teh doc tommoorrow but i cant sleep hoping i can get something to relax me till then


Jody - wish you good luck on the test!

Tomorrow, I have an appoinment with a local ENT doctor, who actually knows very little about dizziness, its causes and consequences. I want him to look into my sinusis, because for several weeks I have had bad pressure and stuffiness in my nose, on my forehead between the eyes, and even somewhere behind my nose, right in the middle of my head. Very strange and dreadful sensation. Maybe, the doctor can see something wrong in my nose with his instruments. Really, I am not too hopeful, that he can help me - my family forces me to go there.

I am much better in respect to balance, my energy returned to me, maybe up to 90%. Just to remind you - I have been sick with labs/BPPV/PLF (or whatever it is) for about 17 months.

Anna


This site is such a God send.

Shakes, wow, if I have an 'inner shaking' episode, I can't go anywhere or do anything. My knees turn to jelly, and I just shake and shake.

I think that the worst thing for me is the upredictable nature of this thing. I never know when I am going to have a good or bad day. I managed a family christening on Sunday! Can you imagine that. I had to sit down all the time in church and could not stand up for any of the hymns,I couldn't have cared less who gave me filthy looks when I couldn't get up to take communion, I'm sure God understood my predicament, and frankly there is no greater endorsment than that! We then went to a reception where I was expected to drink champagne, standing up, whilst having a conversation with some distant relative. It would have been more practicle to organise me a day bunji jumping! Anyway, I got a seat in the corner, got handed the baby (my neice), and whilst they all had a jolly good time, I prooved extremely useful, as she fell asleep on me! I felt about 95! The old Kate would have had the vicar up and dancing! Maybe it is correct that I have to learn to live with this a different way. I was getting depressed enough about getting old, but at 41, I hadn't quite expected to descend into maiden aunt status just yet! Anyway, Paul...I can do 5 seconds!This has improved from no seconds , am I on the mend?

Keep smiling all, it is the only thing that gets me through sometimes.

A bit low,but still trying to maintain my sense of humour,

Kate


Laurie - the cold may temporarily make labs worse yest but DO NOT panic - it will be temporary. V v normal for this.

Jody - on the diagnosis section on my site (labytinthtis.org.uk) you will see some details about the tests are you are having - it may help. How odd about the vitamins - never heard that one b4!

Good luck! xx


Anna --

I have the exact same pressure -- right between my eyes, also bridge of nose and forehead -- mine has been worse the past few days. My MRI back in August showed sinusitis but back then I had a cold. Now I just get that pressure, at times a headache right between my eyes and on forehead. My nose feels stuffy but no drainage or anything.

Let me know how your appt. goes -- my internist back in february said that a sinus condition could definitely exacerbate the labs problem (DUH) -- also said that the symptoms can be similar.

She gave me an antibiotic (seemed WAY after the fact to me to be taking an antibiotic) but after two days I felt really sick -- I don't know if it was the drug or whether I came down with the flu -- my daughter had it a few days later. She also gave me flonase which I never used -- maybe I will give it a try -- I'm always worried about any medication making everything worse.

Hope you get some new info or help!

Mary


Mary -

About this pressure in the forehead, between eyes and nose stuffiness. Deep in my heart I am absolutely sure, that all these things are bad consequences of the labs, not sinus problems primarily. I also do not have drainage from the nose, no sneesing, just pressure, heaviness and stuffiness. I myself bought an over-the-counter nasal spray that says “extra-moisturizing nasal decongestant”, and I have just one drop in each nostril when the stuffiness gets unbearable. It happens usually when I am tired, or before I go to sleep (otherwise, I will not be able to sleep normally), or a thunderstorm, or rain is coming. It helps to relieve the stuffiness somewhat. For forehead pain and other headaches pain there is also one thing that helps me a lot – butalbarbital/acetominophen/caffeine combination (my GP prescription). I take it “when needed”. (tons – before, less and less - now) Remember, it is all very individual, you have to try everything for side effects. Mary – it seems like yours and mine symptoms are very similar. If you do not mind, I will send you my E-mail message to famous Dr. T. Hain of North-Western University in Chicago, who specializes in dizziness and its causes (Meneire’s, labs, fistulae etc.). He replied to my message and shortly answered my questions!!! Mary - Do you mind if I send you my correspondence with Dr. Hain?

Kate – I like your sense of humor. I also try to make jokes, because it is the best way to cope. Just yesterday night, I had a lot of fun watching Woopy Goldberg’s Broadway show on TV. She made jokes on her heroines’ menopausal problems, awkwardness, or even disabilities. But the jokes were so kind, that you immediately fell in love with her heroines. They are funny and lovable, no matter how “strange”, or “abnormal” they look or behave. I imagine, we look a little “strange”, or “abnormal” because of our condition, but aren’t we good persons?!!!

Hugs, Anna


Anna -- Please send me the email if its no problem -- I would like to read what he has to say. Thanks.

Mary


Mary and Anna,

Its acctually strange that your both talking about sinus problems. I have NEVER had sinus issues until after getting labs. When my doctor told me a few weeks back that the pressure in my ears was due to sinus after looking up my nose, I was truly surprised. As I said, I've never before had sinus issues....Ive been waking up in the morning dizzy, puffy eyes and a little congested, all of which disappears as I get up and start moving around....I don't know...maybe there is a link with the labs

Laurie


Just wondering.....why is it that xanax and ativan (anti anxiety meds) help the dizziness??? anyone have any ideas???

Laurie


Mary - actually, your E-mail address is not shown on this site. Please, send me a test message to: aakselrod@landauerinc.com I will reply with Dr. Hain's message

Laurie - it is a great thing, that Xanax helps you with dizziness, no matter why and how it happens. Personally, I think, that for you it works as a good anxiety releiving agent. You are emotional and very anxious, which adds up more lighheadedness and dizziness on top of your inner ear problem. If it helps - take it! As for me - Xanax also get some releive from terrible anxiety during my worst time. I did not mention, though, that Xanax would make my balance better, or stop dizzy spells.

Anna


Hi everyone Hope the bad episodes are decreasing for everybody.Its amazing how you can have a great day,then early evening it just lets you know its still there.Still getting the boat sensation,and the rocking and rolling whilst sitting down,even with back pressed against chair.And now I am getting like a nerve twitching very fast seems like its coming from inside my ear drum.hey ho.Anyway sinus probs yes never suffered in my life with it, but this monday it started,I was lucky I had docs appt,and he confirmed its probably related to labs,but we knew that really didnt we.I just hope its a sign we are kicking labs into touch and not because of the weather,funny though we seem to be reporting this symptom around the same time.still washing car for exercise must have the cleanest car in England by now,but downside is I am down to the undercoat colour now, so she is grey instead of white. Kate Yes any improvement is a positive sign,please keep it up.Oh just thought of something I hope it helps someone,when you lay down in bed or where ever, and feel the boat coming on,divert your brains attention to somewhere else.I start tapping my fingers lightly on my leg,or put my thumb to each of my fingers as if I were counting.I do this maybe for 30 secs or whenever my wife hits me to stop disturbing her sleep,wish I could sleep through night,she still can't get her head around labs.Anyway this for me sometimes seems to help,I hope it works for some of you and it not just me.The pressure is building up behind my ears now and feels like its coming down either side of my throat and my vision seems weird and I feel like I am getting the flu all in about 1 minute isn't great.Better get the hose and bucket out again,No I am not joking it will not win,I going back to work next week.Good Day,Good Day.


Hello Fellow Labbies,

After a mere nine months of labs, I believe I have recovered from the virus. I don't think any of us realize how much the anxiety of this virus effects us. Everytime I hear a big rain storm is no it's way, I panic. The barometric changes make a me panic. This is the worst time of the year for allergies, which I suffer from, I panic. This is to illistrate why Xanax and other valium based anti-depressants work. They slow down the brain. So, 2/3 of everything is attitude. This virus is dibilitaing, but not fatal. It's spring, thank heavens, the best time of the year!! Don't let this "thing" take over your lives. Dispairing will only make your hips grow bigger. Also, women of menopausal age. Many of the symptoms of menopause overlap the labs symptoms. Try a great site I found call "Minnie Pauz". Have a great day.

Robin


need some advise anyone know....went to specialist a few weeks ago said labs then she said well lets get some balance tests just to make sure...i have to call her back in a few days for results...but when they were putting the balloons in my ear the left responded well but teh right they had to use cold water cuase it wasnt responding as well...i had a earing test both ears are fine...had ct scan blood work fine....do u think there is just a little damage in right ear or what...im worried until i talk to doctor in 5 days anyone else go through this?????????PLEASE HELP


Hi All,

Having a really teary one right now, my children are mortified, they are not used to me crying. Living life as a 'half person' is so frustrating and alien to me. I got attacked by 'the alien' as we have come to know it(!)in the canteen today, and had to come home from work at 2pm. I was just contemplating the cheescake as well! (she said flipantly, but tearfully!). Nowadays I have stopped going round and round and just go up and down, it is as though I have just got out of a lift.I hope this represents progress! It is as though I am stood rigidly upright and someone is just shaking me up and down!

Anna, hugs back, you don't know just what that means to me right now.

Chad, I know it's really hard, but please try not to panic, or the residual anxiety will be worse. You are trying to train your brain to compensate for the damage of labs, and at the same time training it to panic when it, or anything concerned with it hits. I know it is really difficult, and I am not altogether getting there myself, as you will have read of me. Now, I do not like or believe in foul language, but when the labs strikes I call it every cuss word under the sun (in my head) to make it go away. I would be ashamed to admit to my mantra now! I do find it helps though as it gives me back some control, it also releases the anger that I have built up inside towards this thing.

I am back to the docs again tomorow and will let you know how I get on.

Kate


Hi All,

Well, I went to a psychologist yesterday and she thinks ALL my residual dizziness is anxiety. The good news is its fixable.

I have resisted this idea for a long time thinking that there MUST be some physical reason for it, although I did acknowledge that the anxiety had become an entity in itself and has added and enhanced the dizzy feelings.

Anyway, she gave me this fact sheet about panic attacks which she said did not entirely encapsulate my condition but was useful to read, and lo and behold look what it says about dizziness:

"Sometimes you may feel quite dizzy when panic comes on. It may be that tension is affecting the semicircular canal system in your inner ear, which regulates your balance. For a few moments you may feel dizzy or it may even seem that things around you are spinning. Invariably this sensation will pass. It is not dangerous and very unlikely to be so strong that you will actually lose your balance. If sensations of pronounced dizziness persist for more than a few seconds, you may want to consult a a doctor (preferably an otolaryngologist) to check if infection, allergies, or other disturbances might be affecting your inner ear."

So the anxiety can cause a physical reaction. The reason I resisted the idea that it was anxiety was because I thought that it meant I was imagining the whole thing when it felt very real to me. Now I see that by being anxious it could actually be causing it.

I constantly scan for the slightest feelings of dizziness or any indication that it's coming back and feel instantly scared if I detect anything unusual.

A vicious cycle:

perception of dizziness--->feel anxious--->feel dizzier---->more anxiety and so on and so on.

She's given me some relaxtion exercises to do and a log to write down any anxiety symptoms and my thoughts. I go back in 2 weeks.

Food for thought guys?


Nikki, I sooooo believe that it gets to the point where the labs is pretty much gone, but the fear and anxiety of it kind of keeps the symptoms alive, if that makes any sense??? make any sense to anyone else??? lets get some feedback on this one!!! The anxiety really seems to hang around. I battle with the fear of it coming back everyday. I think your taking a step in the right direction Nikki...think I need to do the same :)

Laurie


anyone respond to my message..about the eng balloon test?????????


i think we all have anxiety i look up what u guys say like my head weighing 300 pounds and stiff neck and all that and someone wrote in the morning there arms or hands are numb like out of blood for a second or two...i have all that its been 10 weeks something serious would have happened by now if it was serious we just try not to worry but i KNOW ITS EASIER SAID THAN DONE!!!!!


Hello guys :) I went for my ENG test and "that other one with the long name".. The "other one" wasn't bad - I just had to listen to clicking noises in one ear and static in the other for a few minutes with my eyes closed. Then I had to look at some moving dots of light while the computer tracked my eye movements. (A little dizziness, but nothing horrible.) I have no idea of the results yet, but should get those in a few days. The ENG was awful! Which I guess is actually a good thing, since it means there's no structural damage to the inner ear. But the ENG test was no fun - talk about dizzy and nauseous! I haven't been that bad since this first started, so I guess that means I'm making progress :) again, no official results yet, but the technician said she knows that high reaction to the water in the ears is kind of a good thing. Today I go for "balance therapy" which is supposed to teach me some exercises to do at home to help regain my balance. I'll pass those along incase they'll help anyone who reads this.

Mary - sorry to hear about your bad day! It sounds like a doozy! I like your "mantra" idea though :) Hey - whatever works, I say! The technician who did my tests yesterday told me to try counting backwards from 100 by 3's, as a means of diverting my thoughts from the dizzies and nausea. It helped a little, but your idea sounds like more fun *g* During childbirth, I found chanting "relax, relax, relax..." over and over helped me through the worst of it, but that doesn't seem to help me with the dizzies. Nikki: Thanks for the info about anxiety - it's nice to have confirmed what several of us have suspected. :) Gotta go for now - more after my appointment today!


see i think i had some strucural damage i dont know but they had to use cold water in my right ear......hopefully it will heal though they did give me a hearing test and it was fine


Hello again! Well, I had a really good visit with the therapist at the "balance clinic" this morning! She had me try all sorts of movements to assess my balance troubles and dizziness. She didn't say what I do have, but she ruled out BPPV. Aparently, if you can lay down while turning your head to either side without getting really dizzy, you don't have BPPV. I get dizzier when getting up from that manoveur, so she ruled out BPPV for me. She said that folks who have to sleep sitting up have BPPV. (Sound familiar anyone?) If you do have BPPV, there are some manoeveurs (Epply?, etc.)that can cure the dizzies outright for about 70% of sufferers, so it's worth looking into! Anyway, she told me to try to quit holding on to furniture and walls, etc. when walking so that my brain can begin to learn to compensate better. Also, she gave me quite a list of "exercises" to do to train my brain to not feel so dizzy. It's too much to list here, but I'll try to post it on my personal website in the next day or two, so you guys can try them too. She said it would take about one and a half hours a day, total, but you could break the exercises down into little segments to be done when time permits. Do these faithfully for about 4 weeks, and I should expect to see a lot of improvement in my balance and dizziness. She also advised against using the Antivert or Meclizine unless I'm having a terrible day and can't function without them. She confirmed what you guys have said about these drugs delaying your brain's ability to learn to compensate. She basically said to "push yourself just to the point where symptoms worsen slightly" as much as you can stand to, in order to teach your brain. She likened this to working out with 2-lb weights and not building strength. But if you gradually increase the amount you work out with, you'll build strength. Anyway, it was a productive visit and like I said, I'll try to post the details of the exercises on my own website as soon as I can. Hang in there everyone! P.S. Chad: I think your "balloon" test and then the "water" test, must be like what I had yesterday (ENG). I didn't have the balloons, but the water stuff sure got a reaction out of me! If your test was what I think it was, then be glad you got a reaction out of the water. It may mean that you don't have "physical" damage to your inner ear (which I'm told is not fixable, except through medicating the symptoms) and that you can benefit from these exercises I mentioned.


i didnt respond real well to the warm but the cold water in my right didnt respond well which may mean alittle damage but the hearing test was fine so hopefully it heals....still have to talk to doctor


dont pay attention to my last email....so if my right ear didnt respond to the balloon but the water as good as my left...and they gave me a hearing test and im fine....and just say there is alittle damage from viral labrynthitis it will heal within time correct....


becuase i definitely am better than i was 8 or9 weeks ago by far


basically is the spacey feeling in my head will go away in due time and get my energy back


i never really had the true spinning vertigo so i hope its not that severe if anything


Hi Guys......Okay I'm freaking out!!!! You all know I have had a pretty good head cold the past week that I was worried about. anyway, I have been doing really well with the labs. Today as I do everyday, I put my head under the sink (bent forward) to wash my hair and WHAMO!! I got dizzy!! Think maybe it could be because of the head cold or is it the labs creaping back!!! as soon as I put my head up the dizzy subsided within a few minutes....what would be your guess???

Laurie


Whoopeee! I saw a new doctor in the practise today, who suddenly started talking Eply manoever and 'second opinion'. I really felt as though she understood. She said that although my balance is rubbish, she wants to do more blood tests to make sure that a kidney problem I have is not underlying the whole thing. From there she is going to support me in getting the help I need. I will report back with my progress. Keep your fingers crossed.

Kate


Kate - fingers crossed.

Chad - yes basically, not much of a reaction means an inner ear problem, full on vertigo means ear is/are ok.

The concensus from the specialists im under (the best in the uk) is that anxiety can hinder compensation, not cause the dizzy feelings but stop recovery. Yes, its kind of a cycle thats needs to be broken. Once you reduce anxiety, you compensate better. I believe this though am yet to see it in action.

Jody - 1 1/2 hrs a day is A LOT! But every hospital does things differently... 4 weeks is not long either. VRT can take a long time for some. I will be interested to see how you get on as Im nt sure what works best.

xx


DOES ANYONE ELSE GET REALY WEAK IN THE THERE LEGS AND ARMS AFTER A WHILE LIKE FATIGUE...and i cant quit shaking I really think that is anxiety


Chad - this weakness in all parts of your body, and terrible fatigue comes both from labs and anxiety on top of it. During the worst time of my illness I could barely bring myself to the bathroom and back in the bed. I was shaking and sweating, and my heart was pounding right in my throat. Nowdays, I am 95% back to my normal old self (knocking on wood!!!)

HOLD ON, Chad and everybody!

Anna


well heres the deal im taking some anxiety medicine when i need it now and the only thing now is i cant quit shaking tremors light tremors like when i go to bed or am just sitting around...i have nightmares and i wake up shaking i may have to take a better dose but for the most part i am feeling great they really calm me down alot and make me feel better....i hope this helps me till i get better????these tremors are the only thing scaring me but the doctor said have no worry at all???? just cant wait to get better


anna your 95 percent now so your basically back to normal completely just about how long did this last for u completely...i really think my eyesite is coming around and then these shakes started i got them one day when i was very very worked up and havent went away..... ANNA and EMMA u were talking about like chills i call them tremors (basically the shakes) i think its from being tired and anxiety my muscles start to shake????????????????????????????respond please and i will be fine


hi all :) Well, I had some good progress the other day, what with seeing the balance therapist and all, only to come down with the flu the very next night. A frustrating setback, to be sure! I'm now pretty dizzy again, but I'm sure it's just temporary. I'm trying to force myself to drink lots of water even though it just goes right though me. (sorry, more detail that you probably wanted...) I only mention it, since getting dehydrated can make the dizzies worse according to my neurologist. Chad: sorry to hear you're having the shakes still. Like you said, you probably just need a different dose of the anti-anziety meds, but I'd check with the doc who prescribed them to you. See what he/she recommends. I suspect that being tired makes it worse too, so hang in there! I too get a little bit of the shakes, but mostly just in my hands, and mostly just when when I'm at my worst. Hopefully your doc can help you get it under control. Are you getting pleanty of fluids? I remember once when I had the flu really bad and got dehydrated, I felt really cold and I shook like crazy. Probably not the same as what you're experiencing though. Laurie: I hope your dizzies from hairwashing have gotten better! It's probably just the cold/sinus thing making it worse. Mine got worse lately with the flu bug, so I assume that's all it is. I'm fully expecting to be better again once I'm over the flu. :) Anna: Glad to hear you're doing so much better these days! 95% - Wow! It gives me hope that I'll be there soon too. :)

I've got a question I've been forgetting to ask: Does anyone know if labs can be contagious? (Specifically, the type that results from a virus messing with your inner ear.) I sure wouldn't want to pass this on to the children in my daycare or my own family!

On a positive note, I managed to walk down the street without holding on to the walls or my husband, and even went to dinner at a little restaurant nearby. (Fortunately, it wasn't too busy that night *g*) I still felt very dizzy and nervous the whole way, and I'm sure I looked a bit like a drunken sailor trying to pass for sober, but at least I did it. That's the first time in many weeks that I'd been farther than my own backyard, so I feel that's quite an improvement. Hope everyone's seeing some improvement today :) I'll try to get those exercises posted this evening.


Well another week another doctors appt,for a new symptom for me.The feeling I get in my throat according to my doctor is reflux,but I tried to tell him I am not getting any acid it is more like my muscles I think they are called the mastiods getting tight and then they go tender I try to exercise them by looking up & down & side to side (which then makes me dizzy) but does not help it only goes of by laying down.But apart from that slightly better,just getting the boat,and sometimes a feeling like my brain is twisting or tilting in my skull.But what I wanted to talk about is ANXIETY,after the doctors told me I had labs,as you know you get different symptom every other day seems like to me,he said it was me causing these problems by me panicking.And after visiting accident dept one day, was even asked if I was seeing a Psychairist (cant seem to find spell check on this hope you know what I mean,)because of the symptoms I described were so weird to him.But I could easliy understand If I panic then they happened,no it is the other way around.They just catch you out like Kate and her cheesecake I am sure she was not thinking if I go for the cheesecake I'm going to get dizzy was she.And also some people have said they get numb feelings in arms I have not had that feeling but have had a funny sensation on arms and chest when I rub my skin rarely though.What is that all about,has anybody been told by ther doc why.???????


Paul do u ever shake like tremors for nerves


but honelty to everyone 10 weeks and everyone has been telling me they think im almost back i have been going out after work everyday without staying in (not drinking or nothing) just hanging out but there is always that one set back like pepole talk about like if i didnt have the tremors right now i would be 95 percent....my eyesight seems like its getting alot better the spacey feeling is going away...ive had 3 docs tell me its labs so im sure of it....the test results arent back yet but im still pretty sure i just hate the one set back thats always seems to be there.........I LOVE U GUYS U ARE THE BIGGEST HELP IN THE WORLD even though i know i write alittle to much just alittle nervous


Hi. I stumbled upon this website while still trawling the maze of info on my condition.Where to start?? Well 8 years ago, I had an unprovoked spinning attack ayt the top of my stairs which then stopped but left me feeling off balance, for weeks, specialist diagnosed, labs and put me on a programme of vrt and within months I had forgotten all about it. However, nowand again, I would get an attack of dizziness, not spinning, but like my brain was rattling in my head and I would have to sit still or go to bed until it passed, gp said it was one of those things and not to worry, I also noticed that I would still move for a while after getting out of alift, but It didnt bother me greatly. However, 9 months ago after having my 4 th child, when she was 3 weeks old, I suddenly had a horrific dizziness which came on suddely without warning, I couldnt walk and had to be carried to bed by my husband, when I tried to get up in the night, I physically couldnt and just fell to the ground, like an invisible rope was attached to my head. the next day, felt awful, foggy headed and groggy, got up but felt generally quite worn out and spaced out, also had a migraine. 2 weeks later I had another, this time while we were out shopping, without warning, I felt horrifically lightheaded and wobbly as if my head was going to drop off, had to sit down for an hour, unable to move my head at all, when it finally wore off, I felt fine balnce wise, just a bit muzzy headed. a couple of dayslater though I had a slight feeling of being off balance and felt nauseas too, when I stood still nad looked at my surroundings they looked slighlty off kilter, I went to my gp he looked in my ears and diagnosed ear wax!! they syringed my ears but I felt no better, in fact after syringing, my left ear felt very sore and I developed a slight temp. Went back to my gp on and off for 2 weeks with these symptoms to be told I merely had glue ear, I went completely deaf in that ear and was constantly holding my nose and popping my ears, to no avail, I started having panic attacks, as I went completely deaf in thnat ear, my ear felt blocked and full. eventually one night I woke up panicking, everything looked unreal and I felt really bouncy, my vision was blurred and my ear throbbed, somehow I drove myself to hospital where the doc immediately diagnosed ear infection, she said my ear drum had been about to perforate!!!. A course of antibiotics seemedt o do the trick, my hearin g started returning after a couple of days and felt quite normal, however, for a few weeks after I still felt slightly off balance from time to time, but not in a life altering way, I put it all down to the infection and carried on with life. then bamm!!! last week of november. I felt unwell as if I had a virus, I felt very groggy and muzzy headed and felt as though I was getting flu, 2 days later, I was looking up at something when I felt hideously lightheaded, as though I was going to pass out, I sat down on the sofa and waited for it to pass, it didnt, I ended up gfoing to bed and staying there for the evening, I couldnt move my head at all, as soon as I did, my brain felt like it was being violently shaken and everything in the room seemed to jump. the next day I felt no better and couldnt get out of bed, my eyes felt cross eyed too, the gp visited me at home and declared that I had vl, he said dont worry it will last about 5 days and gave me stemetil. it was another 2 days before I could get out of bed and another day after that before I felt near normal again. the next day I decided to go xmas shopping..big mistake!! I got aout of the car and literally staggered to the shops, my head felt so heavy i couldnt stand up straight, I eneded up going home, but the feeling lasted another day. a afew days later I felt recovered, but noticed that I seemed to drift slightly when I walked, but no other symptoms, so assumed I would be completely better in a week or so. However, a week later I suddenly started to feel really off balance, it was quite scary, I went to my gp who said its this virus, some people are taking a while to get over it and gave me valium and stemetil!!! I was told to take these until I felt better. from then on, i seemed to verr between, afew good days to afew horrid pff balnce days, then at the beginning of feb, I finally felt well enough to brave it into town, however after getting out of the lift, I felt dreadful, bouncy and wobbly, when I got home, I noticed that the floor kept boucing, even when I stood still nad I could barely walk, that night in bed, my whole body kept bouncing and I felt sick, I started to feel giddy all the time and eventuaslly went to see my gp who said, oh this is mdd, its quite usual if you have had vl, its because your damaged inner ear couldnt cope with the lift, dont worry it will get better. I still have it now!!! since then I have had weeks of horrendous symptoms ranging from managable to disabling ones rendering me bed ridden and unable to do anythiong for myself. I have seen a neurotologist who has diagnosed vestibular neuritis, with a failure to compensate, he also diagnosed chronic hyperventilation syndrome which he said was hindering compensation, however since then, I have had 2 attacks in the space of a week which appear like the original illness, one gp says itsmeneieres and has put me on menieresmeds, another says it isall imagined!!!! and the other says it isrecurrent vn. my specialist wont diagnose meneieres as he says that meneieres comes with hearing loss and tinnitus, which I dont have really, I do get mild tinnitus, like a ringing in my ear, but not troubling , however I have discovered that you dont always get hearing loss with meneieres so I am now very distressed that this iswhat I ha ve, however the consulatant said meneieres doesnt cause chronic dizziness, I am at a loss, any one got any ideas?? I have4 children, raging in age from 9 months to 14 and they need a fully functioning mum, at the moment I am house bound and frightened, contantly dzzy and filling myself full of vestibular suppressants on a daily basis.


i truly think the tremors are from my body being tired cause im feeling better and maybe doing to much and nerves.....like when i lay on my right or left side i can really feel them on that side....its weird to explain....?????????????????


Jody - yes labs is contagious for the 1st few weeks. BUT many viruses cause labs and basically it is just bad luck if they attack the inner ear. So many people can have the same virus but only one person may get labs if you get my drift. BUT I have had heard of many people in the same workplace getting labs at the same time. I think there are some viruses which are more likely to cause it.

xxc


Hello everyone! I have only posted once on this website, albeit briefly. I am now at 16 weeks (but who's counting!) I have many of the symptoms that you all talk about, except the anxiety. That I think is a choice. I took the worst time to do an introspective on my life and see if I could refocus and repriorize. I learned patience - taking the good days when they came and taking the bad days as just another day. I did have many days of depression, but felt that was counter-productive. I don't believe that the symptoms therefore are created by anxiety. I cannot or will not live my life in fear!

I also went to my doctor, my chiropractor, a neurologist and an audiologist. I finally went to a Naturopath who told me that my Nervous system was problematic. She put me on a course of EFA's (essential fatty acids)and some Ventigoheel (which helps the symptoms). I will be going for a check up with her next week. On better days, my husband took me for walks around the block and I would do what I could. I learned that you cannot work through Labs, but must just take every day as it came.

I am now back at work full-time and am tired and still have my "fragile - humpty dumpty" days. I start Yoga next week and am looking forward to it. I have been taking my dog for a short walk every morning before I go to work as I believe the air will do me good before I sit in front of a computer screen for the day.

I think this is one of the worst things that have ever happened to me personally. I call it (tongue in cheek) my own personal tsunami - it came just as fast and with as much surprise and it is taking just as long to clean up the mess. The Neurologist said it was like an earthquake in my head and now I am suffering the aftershocks. I think either are a great way to explain it to people.

I am blessed to have a great and supportive family and was equally blessed to find this blog.

I expect to have recurrences, but won't live in fear of them. Just breathe everyone!

Kay M.


Hi all:

I just want to give my opinion re anxiety (can't be on the computer too much right now):

As I wrote before on this site, WORRYING ABOUT THESE SYMPTOMS IS A PERFECTLY NORMAL AND SANE RESPONSE. Inner ear symptoms are completely bizarre, unnerving and debilitating. Most of us have never felt any of these symptoms before in our lives prior to be diagnosed with an inner ear problem.

Of course, we are going to be concerned and worried about what is going on with our bodies. Of course, we are going to be anxious when waking up in the morning, getting in a car, walking down the street, taking a shower, etc., etc., etc. Who wouldn't feel anxious??? -- we do not know for sure how our bodies are going to react from one moment to the next.

The thing to remember is HOW STRONG we all are for dealing with these symptoms every day (many of us with jobs, children, school, etc., etc.). We are especially strong for weathering these horrible symptoms b/c many times we are doing so without much information or assistance from our physicians.

So, hang in there everyone and use this board (and the dizzy lounge) to ease your worries about symptoms -- it seems like there is always someone out there that has felt exactly the same way b/c of an inner ear problem.

Mary


Just reading back on some of the weird feelings and symptoms that everyone has had.

Laurie, hair washing is a flaming nightmare in the shower, let alone head down over the sink! I wouldn't even contemplate doing it this way. if I go to the hairdressers now, they know I am going to get dizzy, forward and backwards, and always really help by packing towells arouund my neck so that I am virtually upright when they rinse my hair!

Paul, there are loads of really weird symptoms with this thing. A lot of them come with the residual anxiety that it leaves behind. Skin crawls and shakes, I have had them both. I think that this is due to anxiety though. Lets face it, if we all had excellent E.N.T. treatment from the beginning, we probably wouldn't get to this stage. Who wouldn't be anxious knowing that if we do the normal every day things of life,i.e. walking down the street, talking to people standing up,washing our hair, going into a small loo (!) we could at any moment become light headed, the world could spin or go up and down, we could feel sick or fall over! I get so cross when we get told it's all in our mind. NO, it's all in our ears, and our minds can't cope!!!

I spent 24 hours crying non stop in the middle of the week. (So unlike me), although my sinuses are stuffed now, and I have a sore nose, I do feel psycologically stronger. How weird.

Best Wishes and love to all,

Kate


Kate - I think just getting "it out" as in crying, makes us feel better - I often feel the same. I have to have a good cry every couple of weeks - it used to be every few days.

xx


Hi Kate,

I would sooooo love to take a shower, but I'm afraid of getting water in my ears and making things worse. I have gotten alot better since the beginning 6 months ago, I'm not really dizzy much anymore, but the anxiety and fear of getting this NASTY virus again has me totally scared. Some say chances of a reaccurance are slim, other say plan on it.......That truly scares me!!! I feel like a sitting duck, which brings on sooooo much anxiety!! My doctor has given me Xanax ( anti anxiety meds) which seem to help, but I still find myself scared. Is a reaccurance rare??? anyone know the answer to that one!

Laurie


It's the uncertainty of inner ear conditions which are the worst thing about it. If a doctor could categorically say to you: "once you recover from this you are immune for life", wouldnt that make life easier for people? Wouldnt you be more patient in your recovery knowing that all you had to do was get through this and that was that?

Instead you're told it's this or that or we're nor sure, or it's only supposed to last a week, or you should see a specialist (who's booked out for the next two months), or it's stress or you're imagining it, or it could come back next week, next month, next year - and that would worry the strongest person!

I think something like dizziness has a deep psychological effect on everyone. It ruins your self confidence and sense of being safe in the world. Simple things that we all take for granted become gifts - provisional gifts!

I remember reading something somewhere where someone likened the dizziness/anxiety to the feeling you get when you are sliding or falling off a chair, and you automatically get that brief sharp warning pang of fear before you right yourself. If you constantly get the sensation of falling or slipping or not being safe you are gonna get constant fear and anxiety arent you? I think if you experience weeks of this state of fear and alertness, its gonna become habit and stick around....

PS. Chad maybe your tremors could be anxiety-related, my hands (and sometimes arms) shook for weeks with this thing.


Hi everyone! I just finally got those balance retraining and dizziness exercises posted to my website. (several pages of stuff!) I've only been doing them for a day now, since I got the flu right after my appointment with the physical therapist, but I think they're going to help. At worst, they sure can't hurt! They're posted on my childcare website (which you're also welcome to visit, of course). The link is: http://www.tendertime.com/labs/labs_main.htm

I'll keep you all posted on my progress, but in the mean time, you may want to get started trying some of these :) Hope you all have a really good day today - goodness knows we could all use one!


I sometimes think the anxiety is worse than the condition, I had to go out somewhere with my husband last night to view a house and I was physically shaking and couldnt focus on anything, when we got out of the car I couldnt even walk, because it was dark and I am now night blind.Last night I took ages to go to sleep and was so frightened that I ended up taking a diazapam( I know i shouldnt) this morning when I woke up my first thought was, how do I feel? I got up and after 5 mins felt groggy and fuzzy and v off balance. I have had to have my shoulder length hair cut short because I found it impossible to wash every day, if I closed my eyes in the shower, I would hit the deck very quickly!!!I am panicking already but am going to try and get through today with nothing but serc. I have been looking into ginkgo biloba and wondered about its effectiveness, any one had any success with it?


hope no one minds me gatecrashing by the way, just wanted to also had that my cons told me that anxiety can hinder compensation greatly, I also hyperventilate and he thinks I even do it in my sleep so I have been referred for breathing re training, the slightest hint of dizziness has me breathi g quickly and panicking, I am hoping that the breathing re training will help with the anxiety aspect.


Nobody will mind you gatecrashing, Erica.


thanks! its nice to vent somewhere people know what you are talking about, in rl no one seems to understand how debilitating this is, my mother doesnt understand why her normally confident daughter who would drive alone for 4 hours to visit her, wont now come even if driven, im lucky if i can go anywhere alone now.


ive been talking about tremors it also feels like body parts twitching can be how i describe it...like sometimes my chest twitches or my arm etc....does anyone have that feeling..its been going on for awhile now???????


Well hello everyone hope you are doing ok,I went to work yesterday first time since jan 21st, I got into my van petrified that I could not do this,but I had to prove to myself that I could.I did feel like crap all day,But the symptoms did not get worse they remained the same as If I was at home.But I think I must have done to much to soon,because that night at home feeling proud of myself and happy even watching a film,our old friend just reminded me not to be so cockshaw and returned with a vengence.So I think on Monday I will do light duties I think. Chad In answer to your question I dont get the shakes as such,but I used to get muscle twitching at first,but now I get like a buzzing sensation inside every now and then.I think that when this is finally over we dont feel like it now, but it will make us all much stronger people after what we have gone through.


Hi all,

I tried Gingko for about two months. After a month of taking it (along with a multi-vit B complex), I did feel a little better -- but honestly, I have no idea if it was the Gingko or a coincidence.

I stopped taking it a couple months ago b/c I started taking an antibiotic and then had a bad reaction. So I stopped taking everything but vitamins.

Hang on everyone!

Mary

P.S. I made it to a store today and drove for a few miles for the first time in over a month -- a little bit of progress.


Jody - thanks for posting those exercises.


i just read that stuff on the website how emma and lila one is 100 percent again they really seem like they know what there talking about..some people i read it takes 3 weeks other it takes a few months and some years but they do get over it......im just wondering if anyone has any signs knowing that they are getting better??????????????


to anyone that knows it seems to me the ones that last the longest are the ones that had true spinning vertigo i never really had that thats why im hoping that mine should go away soon and not stay any hope anyone please know a answer to this??????????????????????????????????????


I am at 10 weeks. The current Labs forecast calls for light dizzyness, headaches, and some sensitivity to sound. I do feel like my fatigue factor has improved. Seeing an ENT Friday.


I am at 10 weeks. The current Labs forecast calls for light dizzyness, headaches, and some sensitivity to sound. I do feel like my fatigue factor has improved. Seeing an ENT Friday.


(and still have that double vision/posting problem.)


well APRIL your with me...im at 11 weeks, fatigue and spacey head feeling still and i shake like when your muscles are feeling weak all the time....went to ent said i have labs...only time can cure.......our lives are so freaking great......


FOR ALL U LAB PATIENTS LIKE MYSELF THAT NEED TO GET A GOOD LAUGH RENT "MEET THE FOCKERS" IT CAME OUT ON DVD TODAY....ITS 2 HOURS OF GETTING AWAY FROM OUR LABS....HAHHAHA


Chad - im emma from the website. Ilia is 95% but im far from recovered....have a read of my story...noone knows why some people recover quicker than others tho it could be to do with the place of damage.

xxx


ent specialist just called me with my balance test results she said i have labrynthitis in the inner right ear is where the spacey head feeling is coming from no brain damage or nothing serious like that...she said i should be coming around in a few weeks...if not call back and starting rehabiliation.....im so happy its no brain damage or nothin i know i overreact but i start thinking brain tumor, ms, etc.....its not worth getting all worked up over...i actually am feeling alittle better today because i think my spirits are higher realizing i have labs and it will go away one day....this website is the greatest....and my regular doctor told me the shakes and muscle trembling is from being so fatigued at night that is why i shake........ THANK U EVERYONE VERY MUCH AND I WILL KEEP U UPDATED


Hi Folks,

Just a cautionary tale about overdoing it......I did, and now I am signed off again for a week by the doctor.

Worked all day Saturday (12 hours), half day Sunday, followed by an intensive 8 hour meeting on Monday,which was an external review of the scheme I have set up at work (like my baby). Tuesday I went for blood tests, passed out in the doctors surgery. Came round shaking and naseous, unable to stand up. That messed up their schedule, I can tell you! The doctor wouldn't even let me drive home. She insisted I came back to see her this morning. Signed off again. She really is trying to help, and checking me out thoroughly, she has written for a second opinion to E.N.T. Probably due to the fact that I am blubbing uncontrollably like a baby, she has offered me anti depressants, which I have declined. My friend who is a psychiatric nurse came to see me last night, and she is going to try and arrange some reflexology and Rhaki for me, and is also advising me strongly not to go down that route, as she feels, as I do, that masking symptoms during a proccess of diagnosis is not a good idea.

Oh woe is me! Whilst I am off, I am going to try and address some of my anxieties, and have some treats.

One of my colleagues at work recently praised me for the excellent work I am doing despite my 'disability'. This struck me as being such an accurate description of what I have, and shocked me at the same time. I am in the proccess of buying a new car with power steering, and better visibility so that I don't have to put so much 'effort' into parking and driving. This is the girl who used to canoe, cycle, run, etc. I'm only 42, and look and feel 92 at the moment. Even the electricity man said to me this morning how ill I looked and 'are you alright love?'. Great.

The worst thing is that you don't have any control over how much longer this will take. I know I'm not the only one too. Why is the medical help available for this so sketchy and inconsistant, when for some of us it can become such a long term and debillitating illness?

Love to you all,

Kate


So well written kate and yes u r v right in all u say. Keep strong and email me whenever wont u. RELAX on your time off, listen to your body, when it wants to rest, let it. Thinking of you. xxx


Hello, I stumbled across your website and have to congratulate you for the vast amount of information accessible to the public. My Story is as follows:- I am a 31 old Australian male that has recently quit smoking 7 months ago (after 10 years) and started walking 3 km a day ( began 7 months ago too). 6 months weeks ago I was waliking on my lunch break at work and felt extremely dizzy (non vertigous), weak as if I was going to collapse which was followed by rapid heart beat. I didn't collapse but caught a cab to the nearest hospital. After a CT (head), MRI (Brain), MRA, Internal heart ultrasound test, Holter monitor, ECG and CT of the Sinuses I was told I have substantial sinus disease (both ethmoids, left frontal and both Maxillary sinuses, with the right ostium totally blocked )and was fine and should go home. However dizziness has continued. I am back at work now however when i walk the ground feels like it is constantly swaying. After seeing a cardiologist, 2 neurologists, 2 ENT surgeons, an opthalmologist i was finally diagnosed with vestibulopothy of the left ear and am in the process of undergoing Vestibular physiotherapy which has helped but i am still not 100%. I have a few questions and would really appreciate some help:- 1 Has anyone found that sinusitis or colds exacerbate their dizziness?

2. Does anyone experience problems with vision e.g Floaters

3. Are there any specific vestibular exercises that people have found helped more than others?

Many thanks in advance for your help


George --

Colds do make my dizzy symptoms worse (esp. increases the brain fog). I have vision problems -- depth perception is completely off -- but not floaters (although I'm not sure exactly what you mean by floaters). Apparently, the eyes do much of the balancing work when there is a problem with the inner ear. My eyes get very, very tired by the end of the afternoon.

I have not started vestibular therapy yet but will likely do so after I get a second opinion in two weeks -- so I can't help you there. Hang in there and check out Emma's website -- the link is up above and it is an excellent source of info.

Kate -- I know exactly how you feel -- I'm turning 40 in July and feel 90 -- this illness is truly debilitating and absolutely no one understands unless they have been through it themselves. Not only do I feel like a 90 year old but I look like one too!!! But we just have to hang on -- we will improve -- and you have done an excellent job working during this -- shows that you are very strong and will make it through this ordeal. Hope that you have a better day soon.

Mary


"Why is the medical help available for this so sketchy and inconsistant, when for some of us it can become such a long term and debillitating illness?"

Amen. And all the websites which say you should recover in a couple weeks need to be taken out back and shot.


Anna --

I was thinking about you and hope that you are doing ok -- haven't seen a post from you in a while -- hope that is a good sign!!

Mary


Hi, everybody,

I can report to you, dear friends, that after 17 months of suffering with labyrinthitis/BPPV/perilymph fistula (or whatever it was) I am 95% back to normal. It means, that my life came back to me. It feels so go-o-o-od!!! I am 53. It has been my fifth bout of the inner ear disorder in 33 years. Four previous bouts were shorter - only(!?) from 4 to 11 months. But every time after long months of sufferings I was back to normal life almost 100%. In between the bouts I was very active, carrier oriented (PhD in Physics), good wife and mother of two great kids (grownups now). I traveled all over the world attending international conferences and vacationing. I jogged, and went to the gym two times a week. But unfortunately, during the bouts of this horrible illness I was a complete wreck physically and emotionally, and spent many months bedridden, or housebound.

Just want to support you all, and to say:

THERE IS HOPE! BELEIVE IN YOUR BODY! YOU WILL GET BETTER!!!

Love you all,

Anna


Hi All, just an update from the Naturopath. The EFA's (essential fatty acids) are doing great. She tested to see if Gingko would help, but found in wouldn't. She said that Gingko dilates the arteries in the head which could increase headaches and as I have had a headache everyday for 16 weeks I don't want to increase them!


Thankyou all so much for being there for me.

Found a new car today, and bought it. I had to go home half way through the transaction and sleep! The salesman rang me at 3pm to ask if I was going back to complete the paperwork! I'm sure that everyone thinks I'm mad, but I couldn't care less. I can't remember a more boring car transaction. Usually I would be excited about getting a new car. It's the most sensible car in the universe, and I have calculated that it involves little head movement, power steering, and will suffice as a little sanctuary when needed!!! My friend called in for lunch, and asked me if she was boring me when we were stood in the garden talking, she said that my eyes glazed over, and I had to explain to her that keeping my balance takes all my energy and concentration, but I was listening to what she ws saying. She totally understood, but can I remember a word of that conversation? Probably not.

Anyway, I feel slightly more positive today, and I feel my mental state improving. Still dizzy and a bit deaf, but have decided that when I get to be an old lady at least I will have plenty of practise!

I can't begin to tell you how much this site saves my sanity. Going to hide away at the weekend, shut the doors and rest. At the moment I feel as though any time I try to do anything normal, a pair of huge hands comes down from on high and shakes me up and down like a human cocktail!

Lots of love,

Kate


Love your cocktail analogy - you should write a book! I also feel like ive been shaken most of the time!

xx


greetigs Mary,

Thanks for the tip on emmm'a website...its really informative.

Good luck with the VRT therapy i found it helped, however i was somewhat sceptical at first.I am back to around 80% but when i walk the ground still feels like it is swaying.

Some advice to all out there, i too was one of the many that became anxious from Labyrinthitis. All the usual stuff like fearing to be home alone, avoiding work, big gatherings, rushing from doctor to doctor to work out what was wrong before i was diagnosed. Twitches and buzzing were also common.

I have found lately that the real severe times i am now dizzy (e.g the 1-2 minute spells where i feel its as bas as when i first suffered it) may be related to panic. I notice that my breathing is really quick which results in hyperventilation.

Anyway , today is my day off (i am working part time for the next 3 weeks then back to full time ). My wife is pregant and about to stop work in 2 month, so i am determined to get better by then. I am about to go to the local shopping centre to walk around as it is good VRT. In the past this has exacerbated my dizziness so i now go their on purpose.

Keep well all.


George said: "I am about to go to the local shopping centre to walk around as it is good VRT. In the past this has exacerbated my dizziness so i now go their on purpose".

I did the same. Shopping in Wal Mart was exhausting, but very good VRT. I would prepare myself morally, grab on the shopping cart, and -go,go,go.

Anna


Saw the ENT today. He said it is indeed LABS. No hearing damage (yay) and I should wait 6 more weeks (after having it for 10 already) and if I am not "mostly" recovered, I would do VRT and get an MRI. He did mention what we all dread, the permanent damage it can cause. But I'm determined to compensate for whatever that might be.

I have felt good the past two days. And am planning on trying to combat my dizziness when it is at its most annoying i.e. when I am tired. I think some late night walks are in order.

keep fighting the good fight, y'all.


Hi Everyone :) I've been off-line for several days and am feeling on withdrawl from this support network! It's been a bunch of ups and downs, mostly downs lately, due to flu, colds, weather changes, etc. but I'm trying to stay hopeful... I actualy drove a short distance last Friday and Saturday (went to the library, etc.) but declined again the next day and haven't felt up to driving since. It sure felt good to drive again after 2 months of being at the mercy of my family and friends to drive me. I was nervous, and took it very slow and cautious, but I did it! I can't wait to get back up to doing it again :) I'm still waiting for the official results from the ENG and other tests done the week before last, and am getting frustrated at how long this all takes... (sound familiar?) In the mean time, I've been trying to do the rehabilitation exercises on my better days. I think before this cold/flu bug hit me, I was starting to notice a little improvement from them. I looked over all the postings since I was last on, and have several comments, so I appologize for being lengthy: Anna - glad to hear you are doing so much better! You are truly an inspiration to me :) George - Glad to hear you got your test results and they were good. In answer to your questions, yes - colds, etc. do definately make my labs symptoms worse! As to "floaters", I know what you mean, and I've had them too, along with what I call "sudden rapid eyelid flickering". I'm not sure if my eyelids actually flicker, or it that's just how it feels, but it makes my vision feel like looking at strobe lights for a few seconds, then it's gone. Worse when I'm tired, of course. I don't know if these are labs related, but they could be... As to exercises, I posted some on my website that my therapist recommended. You're welcome to try them! http://www.tendertime.com/labs/labs_main.htm I'll try to add more info as I get it. Kate- you are so lucky to have a friend who is a physichiatric nurse and is willing to help you through this! She sounds like a real treasure with the Reiki and all! And boy oh boy do I related to what you said about being 40 and feeling 90 - that is so true!!! I never thought I'd be susceptible to having a "midlife crisis", but at 37 with labs, I think I'm having one! Glad to hear you got out and bought a car - I say whatever helps, do it :) Em - as always, your posts are helpful and informative. Thanks for all you do for us! It really means a lot :) "wnb" - I'm glad you tried the exercises I posted, and I hope they help! I appreciate your comment about those websites and doctors who say labs should go away in 2 weeks needing to be shot *g* - I've been saying the same thing to my husband for the last several months, but he just doesn't understand the way you guys do. I truly feel that "labs education" has got to become a priority in our medical community. It wouldn't take much effort, and could accomplish so much in terms of reducing anxiety - and we all know how important that can be with labs! Mary - Glad to hear you were able to drive a bit too. Isn't it so wonderful to have that little bit of "normalcy" returned, even if just for a little while! I always identify with your comments and appreciate your thoughts :) Paul - Sorry you had a relapse after overexerting. I've experienced that too. I'm glad to see your comment about the tremors and "internal buzzing" sensation. I wondered if I was having heart and/or circulation troubles (scary!) so it's nice to know this is possibly just another weird part of having labs. Chad - glad you got your ENG results and are feeling a bit better. The tremors bring caused by fatigue (as your doc said) makes a lot of sense. I've noticed that they're worse for me when I'm tired out. Glad to know I'm not alone! Hope you're doing better with that lately :) Erica - Sorry to hear about your trouble going out with your husband to social occasions. For what it's worth, I've struggled with the same problem and just have to keep reminding myself it's "normal" with labs, and will get better with time. Hang in there! We're all thinking of you :) I'm also curious to know more about your "breathing retraining" - has it helped much? Are there "exercises" you could post that we could try too?

Thanks again everyone for all the postings and comments - even the "complaining" ones. It's so nice to feel like someone else understands what we're going through. It restores me to feeling "human" again to know I'm not imagining this and that I'm not alone. I hope everyone is doing a little better each week - don't give up hope!


WNB U WERE WITH ME im at about 12 weeks my doctor told me wait a few more weeks and if not 100 percent they are going to start VRT.....but im def. better than i was a few weeks ago


I am definitely feeling the LABS today which sucks. I think it's mostly from being tired. I tried to walk last night when I could feel it coming on, not sure if it helped. Over the weekend I learned that hard wood floors and plane turbulance are both hard on me. I did realize though that compared to a month ago, I have gotten a little better. For instance I can sit somewhere with my feet up and not get dizzy. I can also tilt my head when lying in bed and not feel it. So very slowly, it has been improving. The bad days are still frustrating though, when you feel like you haven't gotten better at all.


WNB-----i think that me and u are about the same were getting better but it is slow..although i never had the true spinning just spacey feeling and tired....some days im good somedays im bad....hopefully well get better soon


I only had spinning one very bad day early on. Now it's much more that seasick wobbley feel. I think I am going to start w/ the Gingko. See if it helps my concentration. I feel like the more fully alert I can stay, the less dizzy I feel.

good luck, chad.


Halloo all,

Well, this thing never ceases to amaze me. Worked on the computer this afternoon and felt v.dizzy, felt really low.

However, thankyou Jody for the excersises and the suggestion of the walking cure. I am recovered enough to walk a little way (this is the girl who did the Pembrokeshire coast walk a few years ago!). About six O'Clock, my daughter and I headed out and decided to walk for 30 minutes. Whilst we walked, we saw Moor Hens, Ducks, a mysterious hole in the wall by the towpath which we investigated with a stick! We talked about her day at school and 'chewed the fat' on all sorts of topics. It was fantastic, real quality time together. We have now decided to do this every evening together before supper, now the nights are getting lighter. I was extremely dizzy by the time we returned, but felt really relaxed and calm. I realy feel that if I can do this every evening, with my daughter, we will find a lovely point of contact in our hectic day, re-inforce our relationship that has been so challenged by this illness, and get me compensating at the same time. Thankyou so much, this was a fantastic suggestion. Hey who knows, I might even manage to shift the half a stone I have put on whilst I have been ill!! So, lets get walking, a little at a time, I'm sure it can't hurt, if we are safe and not too far from home.

Another thing I found really helpfull recently was another piece of advice I got from the net. Apparantly, if you sit on the floor with your knees together and raised, put your head on your knees and cover your eyes so that no light can get in, you can 'trick' your balance to re-set itself. I have tried this several times and it seems to work. Sit for a few minutes and then 'try it out', if it hasn't worked, I tried again, and it definatley gave me some symptomatic relief. Has anyone else heard of this?

Love to all,

Kate


i hate the anxiety with this....my heart always pumps hard when i do something it sucks...


Chad, At once stage or another over the past 6 months i had the rapid heart beat, skipped beats, twitching in my calfs and other areas of my body, buzzing sensations in my legs, migraine like head aches e.t.c To the point where i wouyld count my pulse numerous times a day

HANG IN THERE

I was sick of people telling me this is anxiety and being oversensitised to your normal body function but now i accept it is Anxiety.

In my experience i found LAbs caused anxiety.

Anxiety is a funny thing....you almost have to accept yopu have it to stop it!!!

keep well


Hi everybody,

I've been reading these pages for a while and I finally thought it was time to bore you with my personal labyrinthitis story.

I got a nasty flu in December 2004 that lasted a week. I had a few days of ear pain, tinnitus and mild dizziness, but it passed.

Then, on Jan 1 2005 I had my first 'attack'. At the time I thought my hayfever medication had reacted badly with the alcohol from the night before or it was food poisioning, but I had never felt anything like it before. Six straight hours of resting my head on the toilet bowl, vomitting, shivering and scared to move an inch with severe vertigo, all the while being perfectly lucid. I kept trying to go back to bed, but the staggering from the bathroom to the bed was bad enough that it would always set of the vomitting again. At this stage I did not realise that the best thing to do during an attack is to stay perfectly still until it passes.

About six hours later I could finally sleep. Most of the next day was spent in bed, but I recovered enough to be fully mobile the day after that. Two weeks passed with me feeling fine and then I was sitting at the kitchen table on Saturday night ready to go out, and *bang*, I turn my head and it is with me again. Another six hours spent with my head resting on the toilet, vomitting and shivering while the world span around me.

I went to the GP a few times and got the same old story: "give it three weeks and then you will be better". Stemitel did nothing for me unfortunately. When it wasn't getting any better I went to a specialist, had an ENT and MRI, and he ruled out Menieres/tumours (thank god) and diagnosed me with labyrinthitis.

These attacks (4-6 hours vertigo/nausea/vomitting) have happened with suprising consistency -- always with 14 and 17 days 'rest' between them, seven times in a row. During this time I got married (3 days after an attack - the wedding was a success but I kept hoping I would not have one during the ceremony) and went on a honeymoon in Malaysia (I had another attack there which meant I stayed in the hotel room for two days, with six hours spent staring perfectly still at the bathroom wall.) I've also been working full-time (with some sick days) and finished a graduate diploma I've been doing part-time (it was quite stressful trying to study for a 3-hour exam when you know you could be knocked out for a few days and miss the exam, and some days I could not even read I was so dizzy).

I am on Serc at the moment and I am also taking Gingko. Luckily it has been four weeks since my last attack and I am praying that they have stopped. I think the attacks have taken their toll: I am fairly dizzy when walking around (spongey feet, lurching sensations) and things like bookshops and supermarkets can freak me out. My anxiety is much worse - I am always wondering if my next attack is coming, and I have developed bad tinnitus in the right ear. My wife and workmates have been very understanding, but after four months with sporadic progress it can wear you down.

Anyway, thanks for listening. Emma/Ilia, great website (http://www.labyrinthitis.org.uk/) but I have to agree with others about changing the pink background. :)


Hi, everybody,

Paul - I am personally very impressed by your strength. In spite of your condition, which gets really horrible at times (we all on this site understand your sufferings completely), you continue to lead almost normal life! I have a question to you. You said, that your doctor ruled out Meniers’. To my understanding, you have the symptoms very similar to that of the Meniers: violent vertigo which comes like an attack, tinnitus. I know, that with Meniers hearing impairment does not necessarily come from the beginning – it can develop later. Did you try to seek the second opinion on your condition? Did you see any correlation with what and how you eat (salt, sugar intake, long breaks between meals) and your symptoms?

Anna


GEORGE DO U STILL HAVE IT


Tried another walk tonight, wow am I sick and dizzy.

Can't stay, but keep thinking of a programme I heard on Radio 4 about that old record 'I will survive'- you know, the one by Gloria Gaynor. God, that is my mantra, going to do another walk tommorow. 30 mins a night until I build up my strength. I will be walking all night before this defeats me, bloody illness.

Love to you all,

Kate


Hi, guys,

Kate - of course, this illness will not defeat you – I can see it right away from your great attitude. But let me cool you down a little bit with your walking. Do not push yourself too hard! You said, that you feel very sick and dizzy after your 30 min walk. I am absolutely sure, that you SHOULD reduce your everyday walk down to 20 minutes, even to 15 minutes. A year ago, I tried to push myself over the limits with long and exhausting walks alone. I was thinking, that if I would increase my walking time every day by at least 1-2 minutes, I would build up my strength and endurance and gradually improve my balance. It did not work the way I thought. One day I would be able to walk far away from my house, but I literally would crawl back, feeling nauseous, terribly fatigued and the ground would shift and bounce under my weak legs. The next day I would not have guts to go out of the house even for a 5 minutes walk even grabbing on my husband’s hand. I understood, that I had to slow down, because over-stressing my impaired balance system would not do any good to me. Even now, when I am probably, 90 or 95 % back to my normal, active self, I listen to my body very attentively, and I try (if possible) to quit any activities if it gets too much and when I see the signs of fatigue in my body. I think it is a good way to support myself in this long battle for normal life.

Everybody, try to stay active but avoid fatigue.

Hugs, Anna


Hi Chad, Yes i still have it but probably 85% there. I am back at work which 4 months ago i thought would never happen. I still have subtle swaying when i walk.

Paul R: I think the idea of the pink background is to bring on the dizziness while you are reading Emma's website. Remember the only way to beat this is to bring on the dizziness and let your brain adapt to it.

When i first experienced Labs (not knowing what it was ) i spent the first 4 weeks on the couch not moving which is the wrong thing to do. The only way to beat it is to provoke dizziness. Keep well all


Anna - I'm almost certain I do not have Menieres, because:

1) No swelling was detected in my ear when I had my hearing/balance tests, (I think this was the test where they put the clicking electrode in your ear) so my specialist ruled it out.

2) I do not have any fluctuating hearing loss around the time of my attacks.

3) I do not have any feeling of "fullness" in the ears.

4) Salt does not seem to affect the symptoms.

5) My family is prone to 'normal' labryinthitis: my father had it for over a year when he was my age and was bed-ridden for two weeks.

In any case, I am supposed to have another set of hearing/balance tests in three months, so if anything changes (eg swelling) I will find out if I am currently atypical.


Hi everyone

I wonder if anyone can diagnose me! I am from the UK and labs has been mentioned to me but I have not been definitely diagnosed. I have a 3 month wait before I can go to ENT.

Last November I had a virus whereby I lost my voice, a few weeks later I had my first dizzy spell, I felt very lightheaded and as if I was going to pass out. Doctor gave me stemetil which I took for 3 weeks and on coming off them I was fine.

Over the next 3 months I had a few slighty dizzy spells but nothing too bad.

A month ago I had terrible dizzy spells and had to stay in bed for 2 days until I got a 20mg dose of stemetil from my doc. Following this I had diahorrrea and was in bed for a further 5 days fighting of some kind of virus. Along with anxiety I was in a bit of a state. Since then I have had mild dizziness with feelings of unsteadiness when I an walking. At the weekend I went for a walk and felt the wind getting into my right ear. Two days later I have had funny feeling in my right ear, though no pain or deafness and the dizziness has returned along with the unsteady feelings. I have not been able to work for the last month and have only been to the supermaket once on one of my good days.

All in all I have dizzness along with unsteady feelings, no deafness, no vomiting, no nausea and only 'feelings' in my right ear, no pain. Does this so0und like labyrinthitis. Would be lovely to hear your thoughts.

Sandie


Hi, everyone,

Sandie - I am not a doctor, but from what you say, it does sound like you have labyrinthitis. Actually, it is terrible, that in the UK you have to wait for several weeks, or months to get to an ENT doctor. On the other hand, my local ENT doctor in Stillwater, Oklahoma was of no help to me. When I first visited him in the end of 2003, he immediately admitted, that there was no cure for labyrinthitis or BPPV, and it should subside by itself in a few weeks or months. He said that I could do Brand-Daroff exercises to speed up the recovery - the exercises made me much-much worse - I wish I never visited that doctor! He did not warn me, that airplanes, with their terrible noise and vibration, could make my condition worse - and I went for long flights to and back from California. It made me sick completely - after this horrible vacation in California I spent 5 months bedridden, or housebound. I returned 90% back to my normal self only after 17 months of lab/BPPV sufferings. This doctor was not only useless, but in fact he was harmful. With this illness I can trust only my own feelings, extended research. Ana I have to be patient, patient and patient.

Stay strong, friends.

Anna


Just checking in,

Sure this won't last, as I know I have good days and bad days, but guess what...I have just had my first day since Christmas without the dizzys...maybe (fingers crossed,touch wood) I am starting to compensate again. Heres hoping.....I waited and waited for it to come on today, first day back at work, really stressful situation, tutorial with new students that I had only just met...the anxiety started to get me, but NO dizzys. I have just got to not overdo it now..... bet i'll feel horrid tommorow, a good day normally pays back with a bad one with this thing......anyway, heres hoping!

Best Wishes,

Kate


After seven very horrible weeks (and nine months), I have now had two decent days -- much less body swaying, dizziness brain fog, fatigue. Trying not to get too excited as this usually doesn't last -- but as you say Kate -- here's to hoping!

I started taking a diuretic three weeks ago -- maybe it is helping or maybe my body is finally gaining some ground. I stopped the diuretic for a couple days b/c I think I was getting a little dehydrated (even though I have been drinking at least eight glasses of water/day. Going for a second opinion on Monday.

Hang in there everyone -- Mary


GEORGE - laughing at your comment about the pink on my site.

PAUL R - I chose pink cos I love it but yes realise I should change it - and I will - but it will take much time - which I dont have at the mo!

BUT guys, ilia and I find the site fine to look at and I guess we thought everyone else would - the site is for long term sufferers and by which point, dizziness is bad but not too severe.

In my opinion, looking at the computer - whatever the colour - is bad for a vestibular disorder!!

Hugs xxx :-)


IS IT ME OR DOES EVERYONE ELSE HAVE HEAVY BAGS UNDER THERE EYES SOMEDAYS......BECUASE WERE SO TIRED?????????????????????AND SOMETIMES RED EYES FROM TIRED???


Hi everyone,

Is it the norm with labs to have "spells" of dizziness? I'm wondering if at this point its the Labs or Anxiety running a muck. the symptoms between the 2 are sooooo much alike its hard to tell.

Laurie


Hmm anxiety and labs are actually v different kinds of dizziness...but at the tail end of labs it is common to have spells of dizziness.

xxx


Laurie - Emma is right "anxiety and labs are actually v different kinds of dizziness". Labs brings on dizzy spells and anxiety because of this dizziness. I mean, that dizziness is a primary symptom of labs, and anxiety is a secondary symptom (not the way around!).

Anna


Please can you explain the different kinds of dizziness associated with labs and anxiety. I am confused!

Sandie


Sandie - see my site www.labyrinthitis.org.uk for inner ear type dizziness symptoms.

Anxiety dizziness is the same dizziness as many of us have encountered - lightheadededness -"normal" dizziness.

xxx


I don't understand :( This is what I'm thinking. If the dizziness that I'm still experiancing is due to the labs, why is it that the dizziness goes away when I take my Xanax (anti Anxity meds) I would think (maybe I'm totally wrong here) that if it was still the Labs the meds may calm down the anxiety, but the dizziness would remain???? Anna and Em, would loooove and appreciate feedback. :)

Laurie


Hmmm. At the start when you took xanax did the dizziness go? Have they ever definitively tested you and said it is labs??? If it goes away with xanax I guess it can only be anxiety related.

xx


Hi Em,

Thanks for responding. Back in November the doctor said it was Labs, BUT that was only by me telling her my symptoms and her knowing that I had just gotten over the flu. I have had NO testing done. I had dizziness 24/7 for about a month and then would have spells of dizziness. Then the dizziness went away and came back after a month in spells again. My anxiety was EXTREMELY high, couldn't eat, depressed and not really funtioning. The Doctor gave me Xanax to take and the dizziness got less, I was eating again and also getting around. I'm at a total loss as to what it could be.....Anxiety or lingering symptoms of Labs????

Laurie


Really dont know but you cant really diagnose labs without inner ear testing.

The main thing it is getting better! I would seek mental support for the anxiety and see if this reduces symptoms. In the meantime take the xanax! xx


Thanks for responding to my post em. Have looked at your website and it is brilliant. Looked at the symptoms page and while I don't seem to suffer as bad as you I do seem to have some of the symtoms. I have not yet been diagnosed with anything apart from an ear infection and been given stemetil which helps but


Thanks for responding to my post em. Have looked at your website and it is brilliant. Looked at the symptoms page and while I don't seem to suffer as bad as you I do seem to have some of the symtoms. I have not yet been diagnosed with anything apart from an ear infection and been given stemetil which helps but


I don't like to take it because I have been told you have to retrain your brain to compensate for the dizziness. I suffer from fatigue, and a cotton wool feeling on top of my head. I feel anxious because of the dizziness which is slight dizziness, I only feel slightly unbalanced when I am dizzy. I don't suffer from dizziness 24/7, I have quite a few good days now. It did start with me being in bed for a few days very dizzy but I wouldn't call it vertigo. When I have the dizziness my right ear is very uncomfortable but not painful, and sometimes I feel a trickling feeling in both ears mainly the right. I have suffered from loss of confidence, don't want to go to work or out on my own. Does this sound like labs or something else, I just don't know what is wrong with me which is the worrying thing. On my good days I am happy and relaxed, not anxious at all, seems like a viscious circle! P.S. how long did you all take off work in the early days. I am missing work and want to go back but really feel like I can't cope with this.

Sandie xx


Hi everyone,

Can someone please desribe the "cotton in the Head" feeling. I'm wondering if this is what I'm having. Thanks Guys :)

Laurie


Here is my question....do you think that Labs can occur in clusters? Today I met a woman who lives 5 doors away from me. I have sometimes seen her out walking with 'big ear defenders 'on. I used to see her on her bicycle, but not anymore. I asked her why she had not been out and about lately, and yes, you've guessed it, labs. She has had it on and off for the last year. This is in addition to my friend who lives around the corner, who has had it, (albeit a lot milder than me), and a friend in the immediate neighbourhood, (who I have mentioned before), that had it so severely she lost her job.

I met this woman at a local birthday lunch, through a mutual friend. When the till in the restaurant started beeping, we both stood with the same pained expression, and when we all walked home together, we both felt dizzy at exactly the same places! She now cannot work full time, and was relieved to find someone in the same boat, as she thought it was her age!

I suppose as it is initially a virus, it could account for it, but it seems that locally I am meeting someone else who has it, or knows someone who has on a regular basis now. What do you think?

Kate


Sorry, another post- for Laurie.

'Cotton in the head' is like the whole world is happening, but just outside your reach. You try to think everyday things through, but your natural thought proccess cannot reach a conclusion. When I was dizzy the other day, I went out of the office for a latte. I left the coffee shop with a newspaper (someone elses). I got back to the office and could not remember picking the newspaper up! Cotton in the head is like being underwater in a swimming pool and trying to have a conversation with your neighbour. It's the worst science fiction film you've ever seen, where the aliens have stolen your brain and made you live in a bubble! This is where my anxiety really cuts in. The more I try to think, the worse it seems to get.

However Laurie, It does get better slowly, and I find tiredness is my biggest enemy when it comes to this! Also I have found that anything that will 'shock' your senses is good. Mint chewing gum, cold on my face, cold arnica cream on my neck, fresh air etc.

Best Wishes,

Kate


Thankyou Kate :) Loved you description of " cotton Head" I just don't get this whole thing. For the last 4 days I was doing GREAT, now yesterday and today have been terrible. Not that I'm dizzy, but I'm obsessed with becoming dizzy and obsessed with how my ears feel...am I going Crazy or what???? It has been 6 months of not being back to myself, I think its the FEAR that has me the most at this point. I do however get dizzy when waking in the morning, but as I move around it fades away. I don't think I have any Bppv, I tested myself, I can turn my head side to side with no problem, also up and down. I'm starting to wonder if any of this is sinus related?? Okay okay, think I have rambled on to you guys enough. Just wanted to say one more thing.....Thanks sooooooo much for all the support with this very scary whatever it is :)

Laurie


KATE

YES labs does occur in epidemics.

SADIE - Not sure, cant really diagnose you as in it wouldnt be right if I did, labs would normally be severe at the start (nt neccessarily vertigo but bad dizziness). Then get better but still remain. It doesnt normally occur in spells apart from when you are nearly recovered.

As for work: I was at uni doing a full time teaching course when I got this, I completed it but it was v hard. THEN I did supply (very part time) for 2 years. I now work 3 days but cant do more than that. So my experience is different to yours in that I was not committed to a job when I got labyrinthitis.

I would request inner ear testing to get a definite diagnosis - from an ENT or Neurotologist.

xx


Hi everyone! Glad to hear that some of you are doing better :) I've been getting a little better myself lately too! I actually drove the car twice in the last week!! (This after 3 months of not driving at all.) It's so nice to feel like I have a little control over my life again :) I still have good days and bad, and every little cold/flu bug that comes around sets me back again, but all in all it's getting better. Kate - funny you mention someone 5 houses away from you with labs. I just talked to a neighbor 5 houses away from me, and she had it several years ago, but is mostly fine now. My doc says the virus that can cause this is contagious (like any virus) but that not all people get the same symptoms (i.e. labs) - it just depends upon what part of their inner ear (if any) is damaged. So a "cold" for one person could mean "labs" for another! Also, glad to hear the exercises have been helpful to you. But do go easy on the walking if it's tiring you out too much. I'm only up to about 20 minutes myself without a baby stroller to hang on to, and I still can't do groceries. I go back to the balance therapist on May 11th, so I'll pass along any more suggestions I get. Thanks for the idea about sitting on the floor with your knees up, etc. I've never heard of that one before! Was it George or Paul R who made the comment about getting frutrated with all the ups and downs over 4 months? I sure identify with that! My family just doesn't seem to understand. They think that if I have a good day or two, then I'm "recovered" and they act as if I'm a hyperchondriac if I have a bad day again. It's just not the same as a "typical" illness - if only we could make everyone understand that! Laurie - hang in there - the anxiety seems to be the worst of it for you now, but it will get better with time. Mine has! (not 100%, mind you, but much better now :) Thank goodness for this site and for all of you who post such helpful comments - I would have gone crazy long ago without you all!


hi everyone

Great web page Rich....thanks for making the effort.

I've been diagnosed with having VL for the last six months. I've been on stemetil,serc and gravol and found that i've felt much better since stopping taking them. I saw a very good specialist in London who told me to lay off those drugs and let my brain compensate. My symptoms were never very severe, and they have improved considerably over the last six months.

My other problem is that had anxiety and depression problems make an appearance about six months before the VL. Those symptoms had improved a great deal, however, by the time the VL hit. I was also taking st. john's wort at the time, which in rare cases causes dizziness. Anyway, i proceed on the assumption it was a virus that caused it.

Now in the last few weeks, my depressive symptoms returned, and a psychiatrist prescribed antidepressants, the equivalent of Lexapro. After reading about the withdrawal effects and possible dependence on the drug, i decided not to start taking it yet. I have also heard, though, that SSRIs have been known to help in imbalance disorders. The only things i'm worried about is that it might interrupt the natural compensation that has taken place the last few months, or that the symptoms might come back the moment i stop taking the medication.

Anyone have any advice? thanks al.


hi everyone

Great web page Rich....thanks for making the effort.

I've been diagnosed with having VL for the last six months. I've been on stemetil,serc and gravol and found that i've felt much better since stopping taking them. I saw a very good specialist in London who told me to lay off those drugs and let my brain compensate. My symptoms were never very severe, and they have improved considerably over the last six months.

My other problem is that had anxiety and depression problems make an appearance about six months before the VL. Those symptoms had improved a great deal, however, by the time the VL hit. I was also taking st. john's wort at the time, which in rare cases causes dizziness. Anyway, i proceed on the assumption it was a virus that caused it.

Now in the last few weeks, my depressive symptoms returned, and a psychiatrist prescribed antidepressants, the equivalent of Lexapro. After reading about the withdrawal effects and possible dependence on the drug, i decided not to start taking it yet. I have also heard, though, that SSRIs have been known to help in imbalance disorders. The only things i'm worried about is that it might interrupt the natural compensation that has taken place the last few months, or that the symptoms might come back the moment i stop taking the medication.

Anyone have any advice? thanks al.


hi everyone

Great web page Rich....thanks for making the effort.

I've been diagnosed with having VL for the last six months. I've been on stemetil,serc and gravol and found that i've felt much better since stopping taking them. I saw a very good specialist in London who told me to lay off those drugs and let my brain compensate. My symptoms were never very severe, and they have improved considerably over the last six months.

My other problem is that had anxiety and depression problems make an appearance about six months before the VL. Those symptoms had improved a great deal, however, by the time the VL hit. I was also taking st. john's wort at the time, which in rare cases causes dizziness. Anyway, i proceed on the assumption it was a virus that caused it.

Now in the last few weeks, my depressive symptoms returned, and a psychiatrist prescribed antidepressants, the equivalent of Lexapro. After reading about the withdrawal effects and possible dependence on the drug, i decided not to start taking it yet. I have also heard, though, that SSRIs have been known to help in imbalance disorders. The only things i'm worried about is that it might interrupt the natural compensation that has taken place the last few months, or that the symptoms might come back the moment i stop taking the medication.

Anyone have any advice? thanks al.


Al,

My doctor wants to put me on antidepressants this week when I visit,cos I told her no last week. But I have changed to see another doctor cos there is no way I am going to start taking those things. She seemed to be very quick to mention them instead of trying other options. They cause more problems than they are worth.

As I believe anxiety is a part of Labs as almost everyone with Labs suffers from it.I suffered from it terribly when I had really bad dizziness 6 weeks ago and had to stay in bed for a week, this was coupled with some other type of virus I had, a double whammy! So I really was quite ill. The anxiety kicked in big time and I was having terrible feelings that I just did not want to carry on, didn't know what was wrong with me etc. I was on Stemetil, which a home visit doctor who saw me said I must stop taking and get my brain to adapt to this dizziness. I have stopped taking them for the last 4 weeks only taking one on a really bad day. I have had 4 in that 4 week period which is good going!

Al, you just have to think that things are going to get better because they do. I have been lucky in that I am not suffering so badly as some but I still have really bad days and feel I can't go to work just yet. Try not to take those antidepressants, and feel strong that you have made this decision and this will spur you on and you will feel better. Antidepressants and stemetil etc only trick the brain into believing there is no problem instead of letting it compensate for the problems that are there. I'm not a doctor but by taking these drugs you are only treating the symptoms.

I have had this thing since november, it started after a virus which made me lose my voice, a first for me! Then I had off and on dizziness for 4 months until I caught another virus and it seemed to come back again big time.It does take over your life and is an awful thing. I am doing much better now but I wish I was better!

Take care and good luck, be strong xx

SANDIE


Hello Labbies,

I'm thrilled to share with everyone that I am 100 % recovered. I got labs last July. The depression and anxiety is all gone with all the symtoms.

The depression hit me really hard at about 4 months. I resisted going on anti-depressant because I knew why I was so depressed. The side effects from these drugs intense, and confusing because Labs has so many symtoms. I was really sick, whether anyone belived me or not. I spent many of days at work accomplishing nothing. I spent way too much time researching this virus at work. However, I had lunch dates with business friends who told me that while I may feel dizzy, light-headed and unfocused. That they really couldn't tell that I was sick. I started seeing real improvements at about 6 months. But it took me another 3 months to really fully recover.

I had my doubts that I'd ever be "normal" again. I am feeling really good again. This is big allergy time, which makes me very nervous, however, at least I know what to expect.

It took NINE months, but I am recovered. So everyone, be strong, it's not fatal. You will get better.


Applause to Robin!!!

It is not fatal, or life threatening – absolutely true. It is “only” life changing….

I have already shared with you, that I am 95% back to normal after almost EIGTEEN months of my fifth bout of labs/BPPV/perilymph fistula (I prefer to say “inner ear disorder”). I still do not go to the gym, but I am planning to start it in a week or two. I do not have to ware protective earphones anymore, except when I went to a jazz club once. I can talk to people standing and looking in their eyes, which was impossible even two months ago. I finally can talk with my children and friends over the phone – this made my head literally buzzing and spinning not long time ago. My recovery was extremely slow. In my previous bouts of this illness, it lasted for shorter periods (five, seven, twelve and six months respectively). The important thing is EVERY TIME I RECOVERED!!! I did have big anxiety, I was depressed and felt sorry for myself (who wouldn’t?). But I was absolutely sure, that some day I would feel normal again – it gave me strengths to go through this terrible thing.

Keep hope, guys!

Love you all, Anna

P. S. Rich Baker - Thank you so much for keeping this site for all of us!


It's an honour, Anna. I'm just glad to be providing such a useful service.

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