Sharp Blue: Labyrinthitis Comments, page 8

Hi all, I have been a Labs sufferer for 3 years at least now and have posted in the past. I had gotten 90% better and have been this way for the past 3 years but not 100% better. My ENT is of the belief that I might just have to live with it. However, I am of the belief that there is still a virus in my body that is causing this. This week I started taking Lomatium Dissectum caplets. I am noticing a difference for the better. Will keep the group posted on its results for me. (please make sure you read about it and its allergies before anyone tries it)

hey guys. its been 18 months for me....crazy i know! im doing alot better although i still have mild dizziness and swaying feeling alot. nothing nearly as bad as it was but i just can't kick this thing. i heard its an average of 2 years to recovery....i hope thats somewhat right.

i was dx'ed with right inner ear weakness....told i would be well in 3 weeks....haha yeah right. i do have alot of good moments though but this is a very slow recovery for such a crappy illness

can somebody tell me how in the world did alicia molik the australian tennis player also with labs,recover in 1.5 years and playing strong tennis once again..how how how!!!!

TJ..

Hello everyone,

Just discovered this group and so this is my first post. Have read several of your posts which has been encouraging--thank you. Was diagnosed with labs after being rushed to an ER last winter with what I thought were cardio symptoms. The doctor said the labs would clear up in a few days, but it lasted 4 months.

Began again late fall with the usual respiratory distress of the season and it has been a rough winter, but I have learned to control some of the triggers and to some degree the "panic" reaction of the body. Unfortunately the past few weeks, I have had a couple of episodes where I thought I was having some sort of cardio episode and would pass out, shortly after lying down to sleep. I would then immediately get up to walk around (which helped), then went back to bed, but keeping myself mostly awake the rest of the night, with the heart beating strongly (exhausting). I don't know if this is positional related and I should try sleeping sitting up, but it seems as if I cannot allow myself to just nod off to sleep, but have to find a way to "ease" myself into the "right level" of sleep or will jerk myself awake for fear of passing out. Has anyone had similar symptoms? Also had sensations in the teeth, jaw and face which were a bit confusing. Hate to go to doctors, but went to see one who thought I should do a stress/nuclear dye test for the heart. The $4000+ pricetag "scared me straight" (not to mention my aversion to nuclear dye in my bloodstream), and I am thinking my symptoms are more vestibular/neurological and related to the labs. Would appreciate any feedback.

Thanks!

Hello Everyone ,

It's 14 months for me, i decided to go get an ENT exam in 2 weeks, I am nervous about the caloric test because I know it triggers vertigo and some people get sick.... Could anyone let me know what was there experience it would be very appreciated.

Thanks

Hey Mac,

The reason why Alicia Molik is back to her NORMAL self because she did VRT...doesnt mean the exercises that the doc gave her...she started to practice tennis when she started feeling better.. I to have been playing tennis and riding my bike...It all about retraining your brain, it really is.

Hope everyone is feeling well! Cathy

tj.

well if i remember correctly she recovered but wasn't 100% yet and im guessing that playing tennis is one of the greatest forms of VRT there is. she probably was very good with it and i read that she said that it will be a while still before she is good again

i just hit 1.5 years and im doing alot more and alot better than i was. but still couldn't compete in tennis

Alicia Molik Recovered just like you will... and you will be able to play tennis too :)

Hello everyone: I was diagnosed with VL about 1 month ago. I didn't know what it was, but I thought I could get rid of it easily. How wrong I was! I seemed to recover after a few weeks but then suffered a relapse about 1 week ago. I hit the 'net again and came across this site. I'm encouraged that there are others like me with the exact same symptoms, but I'm discouraged to hear that many of you have been suffering with this for years and that often, we will live with this for the rest of our lives. I just want to thank everyone for posting because I've learnt a few things from you, such as the need to learn to control the triggers to minimize attacks and so forth. I've started taking natural meds to help boost my immune system, so if anyone can offer any advice on what I should take because it worked for them and they "swear by it", please let me know. Thanks!! Robert robert@innerworks-inc.com

Julie, I just took the VRT tests about three weeks ago including the caloric test. In my case they used air instead of water but I'm told that water is the same, it just feels wet (go figure!). They blow or pour warm water in the ear for about one minute then they do the same with cool air or water. It wasn't bad. The noise the machine makes is actually more annoying then the vertigo that is induced from the procedure. The vertigo lasts for about 20 seconds, then the audiologist or doctor will make you focus on their finger in front of your eyes to stop the vertigo which works nicely. It's really not that bad. I wouldn't want to do it again but I wouldn't be scared to do it again either.

I'm still experiencing head positional vertigo or a slight rocking or "off" sensation when I look up or when I move my head up and down while lying on my back in bed. Is this normal? I know many people have dizziness three or more times a year and I'm hoping this isn't the case for me. I seem to heal pretty quickly from these Labs. attacks but then it comes right back and I'm right where I started from. No doctor will tell you this but I really thing once you get Labs, for some people, it simply keeps coming back to haunt you. I can deal with the "off" feeling if I turn my head but I can't deal with the full on dizzy, vertigo, rocking sensation again!!!

I guess the best way to avoid a relapse is to take vitamins, eat right, exercise and maybe take some herbal or supplemental immune boosters. Has anyone had any luck with Oscillococcinum? I'm told that it is safe and can be used as part of a daily regimen to stay flu and cold free. I never get the flu or a cold though. The last three attacks of Labs. were completely symptomless except for a small fever of 99 and the dang dizziness!!!

sam

hey...how long did it take you to get 100%

Hello Ravyn,

THanks a lot for the response, i will try to think more positive before the ENG test and hope it will not be that bad : )

Julie

Chris,

About 9 months total to get to 100% on some days... I was recovering all the way, symptoms would gradually decrease, but at 9 months I could say that I would have extended weeks/months at 100%.

Got diagnosed with Vn in Sept 06...Started really feeling better 1 1/2 months ago. Felt good this past weekend (close to 100%, some off moments)...I am into 7 months and noticing good moments. Today, I have dropped again...feel crappy. Is that how you all felt when healing? Up days then down days...but all in all..I am starting to do things I never would have done even a couple months ago.

Hello fellow sufferers !

I've had this (whatever it is !) for 15 months, much better now but not 100%. Symptoms included dizzy, pains in neck, head swelling, ear problems & tinnitus , muscle/joint aches, migraine,vivid dreams, depression. Seen Doctors, Neurosurgeon, Balance specialist, ENT . Diagnoses included Virus, BVVP,Labs,Meunieres,Menopause, degenerative osteo, C6 disc damage, etc. Medication included Stimatil,Betahistine (Serc) but get safe relief from Ginkgo Biloba.

I think there's a worldwide epidemic !

Hang in there....it improves with time

Sue.

Fyi -- I took xanax & SSRI's throughout my recovery... I couldnt deal without it.. I took very little Xanax -- less than .25mg a day

Hey everyone, I have been suffering for thirteen days. I went to see a ENT today. I am sorry but after that I have a feeling that I am better off fighting this on my own and looking elsewhere for support. Like here .. I stumbled on this site and was amazed. Ent told me it would be a month or so and I should be fine. He says he sees this all the time. Then I start to read all of your stories and whoa it has been years for some. I feel for all of you. I guess I have my fingers crossed. I was given a prescrip for Mec but I think I will go it alone.

So just to cheer everyone up I will give you my story of the onset.

I like so many was on the plane setting behind this very ill girl who constantly was blowing her nose and all that. I have to say it was disghusting,full flight what could I do.(I have been told that a cold or flu usually brings this on ??) I became ill three days later. Wow did I mention I was on my way home to get married ! Nothing like a cold for the big day. I went out on Thursday night and before I went out I took a few blasts from a nasal spray bottle. Gross but hey clears the stuffy head,(I dont know why I feel compelledto say this I just feel it like a key or something..who knows). So out on the town for a few drinks. I dont drink and have been working in a country the past four months that does not have alcohol,you know against the religon. So I also feel that is key I had six vodkas not to much for an Irish Catholic. I get home and I go to bed the next day I wake up and BOOM I cant hardly stand up.Hey maybe this old guy has a hang over. But it persists. I sleep another hour and BOOM I have to get up to go puke. Tough trip to the DRY HEAVES I can not believe I didnt run into the wall. I slept the rest of the day. I had rehearsel dinner that night what am I going to do. I managed to get up and have a snack. I did run into that wall on the way to take a shower ! I pulled it together and made the rehearsel and the dinner. I felt dizzy the next day as well but managed to have a beautiful wedding symptom free.THank Heavens. I did not know what I had but hoped it would go away. I spent a week in Key West and started to feel alot better.

Now here I am almost four days back home and I see an ENT because I leave on a plane to go back overseas on this following tuesday.

I never have felt ill again I get vertigo when I look up and sometimes feel drunk dizzy or what I like to call off kilter all day. I am tired alot and for a guy who is an avid runner and bodybuilder this is killing me. I dont have trouble with noise or light or planes just the dizzy. I do get a stiff neck but hell all I do know is sleep.

I hope this goes away I mean far far away. I hope this leaves us all. It is truely a handicapping disease,part that sucks is you have to keep on going..you deal with it. So that was my story what a vacation and wedding huh. Lucky for me my wife is the greatest. I tell you I would be lost with out her right now.Thanks Kimmy !

13 days and I am going to count every damn one till I am 110 %

I pray we have all just counted are last day....Here is to the morning

hey folks, going to see the rheumatologist in may to rule out autoimmune disease. had a recent flare-up during which both ears felt like they were going to explode, tinnitis was sooooo loud, right facial tingling was bad. since my right ear acted up worse during this spell i have that full, inflamed feeling under my right jaw now. so here's my question: did any of you folks get that globus feeling (like something is swollen in your throat, neck) along with your ear symptoms? that feeling is almost more disturbing than the dizziness. haven't posted in awhile-sorry. david, thanks for your story and i hope your crap doesn't drag out like some of the rest of us, jennifer, yeah just when i think i am getting better, here comes several crappy days. that's why i am going to the rheumatologist. sometimes i just feel that my ears are burning or inflamed as well as my neck/throat area. i don't get it. maybe i should do like david and stay the hell away from doctors. just fyi, i was recently put on a stomach acid reducer to make sure i didn't have reflux. doesn't seem to be helping but the dr. just wanted to rule it out so i tried it. i didn't know this but acid reflux can cause ear pain. get well, megan

just wanted to know if anyone has tried equitab for vertigo? i saw an ad for this and wanted your opinion. thanks.

Megan, Thank you for the wish you well. I like wise will wish you the best. I have to admit it , I have always been into the whole naturopathy,hollistic medicine thing so I will go that route. I use a lot of supplements and massage therapy for my weightlifting,if I stumble onto something that nips this I will post it here for the benefit of all. I am an avid weightlifter slash gym rat. I refuse to let this stop me. I am so glad that I am as strong as I am. I swear I would have been on my butt a couple of times. I went to the gym and just had a light day with high reps. I think this helps to teach the boy control of movement. I have a friend who does his entire workout with his eyes closed. I'm sure that would control any onset dizz I get. never got to dizz. I am not afraid to say when I was young I used some illeagel steriods.If this persists I will try them again to rid me of this. I have heard of other weak roids like prednizone being prescribed. I can only imagine what effect a full blown anabolic like winstrol or anadrol would have. I wonder what HgH would do. Steriroids are just that a drug that supercharges the body. If one was to take a strong cycle of roids it may JACK up your immune system and body enough to wipe this shit out considering it is suppose to be viral in nature. Megan thanks for hello and Everyone who takes the time to listen to me ramble David

I agree that doctors don't really understand what's going on. One kept on offering "anxiety" meds--no thank you! Feel I am better off researching and handling it myself. One CAN control one's body and the triggers of these symptoms. My feeling is that the nerves affected around the labyrinth can send the brain all sorts of confusing signals that affect not only balance and the ear, but other areas as well.

I have had some success with magnesium (Natural Calm) helping me to sleep and feel better, though one has to find the right amount and perhaps not take it every night. The milder weather seems to help too.

I spent the day trimming trees and digging up fence poles on Friday. I never touched a chainsaw !! but used a pair of those trimmers that extend on a pole and you pull the string. I had to stop about every three minutes but managed. I finished buy pulling up a fence row that was concreted in. I say it was a grueling day. The key here is that was day 14. I awoke on day 15 almost symptom free. I am sitting here today,early morning on the 17th day. Today is the first day I awakened without any sympton not one. I will spend the day today monitering my conditionas we all do. I am going to see my GP today to get a general physical. I will fly back overseas to my job on tuesday. I pray that 18 hours of flying does not mess with me. Flying actually never effected me. I will keep posting from overseas. I hope everyone reads this knowing tommorow you could wake up from your bad dream. Day 17 and no sympton present.

Hello,

After 14 months of lab, I am still struggling with constant dizziness, head pressure and earpain. I am afraid that it's going to stay like that forever or develop in meniere's one day. Just when I get a couple of " not that bad days " i drop and feel like crap for weeks. I have found articles that talk about acupuncture to treat meniere'e disease, so it should help for Lab symptoms as well, i am going for my first appointment this week i will keep you posted. Does anyone have tried acupuncture and found some relief with dizziness, earpain or head pressure ?

articles on acupuncture: http://www.acupuncture.com/conditions/meniere.htm http://www.findarticles.com/p/articles/mi_m0ISW/is_244/ai_111271910

Thanks

Hello Fellow Labbies,

I came down with VL in Aug. 2004. It lasted about 9 months. I went to every doctor I could find, had all the tests to eliminate what it wasn't. All to the same results. It will get better - it just takes time. I had about 6-7 good months and then it came back again - not as fierce, but I felt dizzy and the depression that set it was really tough. The Labs coensided with menopause and many of the symtoms are similar. I resisted go on anti-depressants, although I found valium helped stop the spinning. I found exercise really helped, if I could get myself out. I had pretty much gave up and figured this was it, I would have to learn to accept living with it. I have continued to work all the way through this illness, but certainly not at 100%, not really even at 75%. I had given up on doctors when I found out that JFK Hospital in Edison, NJ had a whole department that studied dizzy problems. I found a Dr. Phillip Kramer. He diagnosed MAV and put me on low dosage of Zoloft and explained about migraines. They can manifest themselves in different ways, including dizziness. One of the symtoms of migraines is light sensitivity. I thought I simply had sinus headaches. Well, I have been feeling much better. Many more days are 100%. Major barometer changes still get me light-headed. But, much of the depression has lifted, I wish I had tried the anti-depressants earlier. Good luck everyone and keep your spirits up. It will improve.

Hi, dizzy people

FYI

I am doing much-much better, than even 3 months ago (see my earlier posts).

My regimen:

Diet: No salt, no caffeine, a lot of fresh and cooked vegetables, fruits. Eating 4-5 times a day in smaller portions. Medication: Paxil 20 mg a day to make me more stable emotionally Supplements: Ginkgo Biloba A LOT OF REST. Walking in moderation.

I will keep you informed.

Stay STRONG!!!!

Anna from OKLAHOMA (35 years with IT, ALL KINDS of horrible and scary symptoms)

hi all, david, i am so happy for you and i mean that. julie, i've never tried acupuncture but if you do it, let us know if it helps. i have heard it helps a lot of things so go for it. robin, what is mav? is it migraine associated something? anna, i am glad you are feeling better. yep, i've had the weirdest, disturbing, and scariest symptoms but i guess i am not going to die. still trying to get answers though. i got my prescription for anti-depressants filled but just too scared to take them. if i knew they would make things better i would. i just don't want to feel worse. take care all and get well. megan

everyone thinks i'm putting it on

a year and a half and while its gone away alot....its still here and everyday. although i do have alot of feel better moments.

im worried about lyme disease....any thoughts on that?

NATURAL ANTI-DEPRESSANT ALTERNATIVES

For those interested, here is a really good resource with lots of great articles:

http://www.alternativementalhealth.com/

When I was taken to the emergency room at the time of my first attack of labs, the ER doctor gave me Ativan, which I thought was just going to be an anti-histamine to help dry up the inner ear. It not only did not help me walk or feel any better, it made me feel so much worse and forlorn, like I was looking at life through a long tunnel. I would not have given that drug to my worst enemy. I found out later that it is a psychiatric drug like Valium, sometimes prescribed for vertigo. Evidently, the drug manufacturer paid Johns Hopkins to do research to find out how many different applications could be found for their drug, a common ploy of big pharma to increase their sales.

For those interested in avoiding dangerous side effects and finding natural alternatives, here is a really good resource I found with lots of great articles:

http://www.alternativementalhealth.com/

I think Rich is on vacation!

Hello Meagan, Julie, I finally tried acupuncture as well, Meagan it turns out that it is better to be paronoid about getting messages! Acupuncture got rid of my neck problem which was bothering me for three years, however next two days I had that same crappy feeling. Vertigo all night long and the throat thing Meagan was talking about. Well I went back to my Acupunterist(DR) Herbaligist and told her what happened she told me the acupuncture would not be able to get rid of the dizziness, however she gave me some herbs and prescribed vitamin B and niacin to flush out the years.I am glad to report that both seem to be working I feel 100% better. The best part although not for my doctor is she told me that she had suffered from the same thing for a month before she was able to get rid of it and has had success with four other patients with the same problem.I am convinced allergies are a definate contributing factor. Thanks Rhonda

Hi, all!

There is hope. I am about 90% back to normal now from my symptoms beginning in February of this year. I had an Epley procedure scheduled last week and cancelled it. My doctor said if the vertigo came again I could reschedule. I honestly think it got a lot better when my doctor was having me lie down quickly on each side while he looked at my eyes. That seemed to produce a marked improvement. The ginko biloba helped a lot, too. I was nervously anticipating a cross-country (USA) flight, fearing that the plane ride would bring back symptoms again. Despite quite a bumpy ride from Dulles to San Diego, everything went great! I really hope all the rest of you experience a cessation of your symptoms. I know from experience my vertigo will come back, but through everyone here I've gained coping skills to get me by until the dizziness disappears - thank you!

Hi Everyone, It's been a long time since I've posted and wanted to share something I discovered and maybe some of you may relate. Go to http://www.mwilliamson.com/hearingloss.htm SUCCESSFUL TREATMENT OF IMMUNE INTER EAR SYMPTOMS WITH NYSTATIN: I was diagnosed several years ago with candida and took the antifungals, modified my diet and thought I had gotten better. The problem was I let myself return to my old nasty eating habits, tons of sugar and processed foods and loads of different antibiotics with no probiotics and have been living with this overgrowth of yeast that is taking over. I made an appointment with the doctor (he's a real MD who gets it) who originally diagnosed my Candida overgrowth and next Monday I will start a very longterm regiment of antifungal drugs. I have to start with diflucan for 21 days to kill the yeast(WOW-THATS A LOT-HOPE MY LIVER WILL HANDLE IT) and then I will start the Nystatin. He told me that I can also irrigate my sinus with the powder. He also ordered a stool test but only for laboratory proof that I have Candida. My mouth is coated white every morning and I have visible fungus on a few of my toenails and was diagnosed with IBS 2 years ago. No one made the vertigo/dizziness/deafness connection until now. Now that I have grossed everyone out I will say that this is the first time in three years that I feel confident that I'm on the right track. Check out some of the symptoms of Candida overgrowth and see if any of you notice any similarities. Most doctors believe that only the extremely sick (HIV/AIDS, cancer patients,etc.) develop Candida. I'm living proof that this is not true. I hope that this information might help some of you. I know that this dizzy world we live in makes us so desperate to find answers and not all of us deal with the same issues but its sure worth looking into. I will keep you all posted as to my progress - if any. Hi Anna, Hope you're doing better. Lauren from Wa State

Hello. I'm new here. I had a brain tumor removed 2 years ago near the acustic nerve. After surgery I lost complete hearing, along with tinitus. Needless to say I went to the dr after our 5th child was born for off balance and surreal feeling. The tumor was found with MRI. Since surgery I live off balance and with a surreal feeling. I also have wierd attacks that seem to be what you have described....not sure if they are anxiety or just the part of the condition. I fight depression. I finally broke down and started a very low dose of Lexapro...does not seem to help but I don not want to up the dose (hate taking meds). I went to neurologist and she thought the attacks might be sensory seizures but seem to me to be more of the outer body surreal feelings??

Just looking for support from others who are living this condition.

Blessings, Lora

hello everyone, have been reading this site for a couple of weeks now and have found so many comments that ring true with my situation. Luckily I've never had the dramatic spinning that leaves you sick but for the past two and a half years or so have had problems with dizzy spells,balance problems,trouble walking properly. Initially I also had lots of jumping nerves, which have settled to small ones that aren't noticeable to other people, and being startled very easily. Like so many of you I've seen neurologists who told me it wasn't their department,ent who said it wasn't an ear problem, psychologists {on the advice of a very rude neurology registrar} who didn't consider my problems psychological. MRI twice showed nothing considered significant, but an 'incidental lesion'that remains unexplained in an area unrelated to balance. Over time I've learned to live with things to some extent. Work can be difficult. Big shops are one of my main issues, I can go in feeling pretty normal and five minutes later am getting spaced out and tripping myself up. Does anyone else feel like their legs take on a life of their own ? The last neurologist said this was a reaction to the balance issues, but it doesn't really feel that way to me. One thing I find helps is not to think of yourself as ill, rather that you have a medical condition. Am waiting to see another ent as the last one blew me out abruptly. Really I want some explanation for the symptoms as it's very difficult to remain undiagnosed. It's been educational and comforting to read so many other folk have similar long tern issues. Thanks to Rich for the site.

Hi, everybody

Just an update for all dizzy people.

I am continuing with my DIET free from SALT (sodium) and CAFFEINE. They are enemies for your inner ears and for your heads in general. And they can cause a lot of your dizziness, vertigo, headaches, noise and light sensitivity, loss of balance, anxiety, nightmares, sweats, etc. etc. Slowly but surely this diet has been doing its healing job for me. I am still very sensitive to weather changes, I am still very nervous (I take 20 mg of Paxil for this). But I have been improving month by month.

Watch what you eat!!!!!

Anna from OKLAHOMA (35 years with IT, ALL KINDS of horrible and scary symptoms)

Everybody - attention!

Lauren from WA state found a wonderful study:

http://www.mwilliamson.com/hearingloss.htm

It is about all of us - dizzy folks! I am reading it right now.

Anna from OKLAHOMA (35 years with IT, ALL KINDS of horrible and scary symptoms)

Hi everyone,

Anna, I hope you continue to improve, good luck to you.

Chris, you are at appx 18 months now, and still feel mild dizziness and a lot of swaying. Just to let you know that I am at the two year mark now and your symptoms have been very similar to mine. You were diagnosed with VN is that right? I was diagnosed with this too due to the fact that I was left with this constant swaying, off balance feeling, when all of the other symptoms had gone. This continued daily for months but has been gone for about two months, so here's hoping it will be the same for you.

At the two year stage now, I am not completely recovered but life is good again. I am not scared of this illness now but take it as it comes. Mostly I have 'attacks' where I feel really wobbly for a few minutes or I feel like the ground has moved for a couple of seconds and that's about it. However, these do not happen everyday. Now and again, I can feel weird for a couple of hours, usually when I am really busy at work (I work in a garden centre which has a glass roof, on a very busy checkout and it gets real hot). This can be awful but I know it is going to pass so I just get on with it.

Everyone - Keep active, change your diet, especially cutting out sugars. I sincerley believe that the key to recovery is looking after yourself and to keep moving to reeducate your brain.

Take care

Sandie

Rhonda and all dizzy folks,

I am glad that you understand that horrible throat feeling (but I am also not glad that you have it). It is literally as if someone has their strong hand up under my jaw and is squeezing as though I am being choked. The feeling waxes and wanes but it is more disturbing than the dizziness. I do feel that it is muscle spasms in the throat. and like you, i am beginning to believe that it could be food allergies. after my trip to the rheumatologist in may (for autoimmune disease) i will head to the allergist if nothing abnormal is found. i might do it anyway as i am starting to believe my symptoms might be food related. i have always been able to eat what i want so this is hard for me to understand. i have cut out all alcohol, caffeine, most salt, and all processed foods. I also don't even eat that much sugar in the junk form. i have been wondering about gluten though which is a protein found in wheat, barley, rye, and oats. cases of celiac disease (gluten intolerance) seem to be increasing. so i am going to ask to be tested and in the meantime avoid all cereals, processed foods, and bread, as well as crackers, cookies, etc. i seem to feel better when i don't consume the gluten so we will see. i am almost at my 1 year anniversary of this junk. i think i will go celebrate.

megan

Hi everyone, Today is the first day of Diflucan (anti-fungal), Primal Defense (a probiotic), Blue Heron (to absord the toxins emitted from dead yeast/fungus), Antibody IgG2000 (more powerful than colostrom because I was not breast fed as an infant), and Med Cap GI(Aloe Vera and L Glutamine to heal my gastrointestinal tract) and so far so good. No adverse symptoms like headache or stomach upset. The Dr. recommended I take the meds on a full stomach. It will be 14 days before I start the Nystatin that was used in the study (www.mwilliamson.com/hearingloss.htm). I have to get the rest of the fungal issues under control first. Please don't think I'm volunteering myself as a guinea pig. I was down this road 10 years ago (before the deafness/vertigo) so I know what to expect. I told my otolaryngologist before my sinus surgery in 2002 that I thought my recurring sinus infections were fungal and he agreed but offered me nothing but a very painful surgery to correct a deviated septum and reconstruct my blocked right side due to a car accident in 1972. Read the Mayo Clinic study on chronic sinus infections where they state that 96% of all recurring sinus infections are FUNGAL. It is NO coincidence that it was my right ear that suddenly went deaf 2 years after the surgery. The reason that I jumped on this immediately is because if it was the fungal form of Candida Albicans that caused all this then the same thing could happen to my left ear and I would be completely deaf. To not be proactive could spell disaster for me. Especially with something so benign as Nystatin. Hope you all have found the study from House Ear Clinic. Their institute looks fantastic and they appear to be highly credible. Lots of research going on there. Don't give up hope-we will get our answers and our healing. I'll keep posting as I go along in this process. Please keep me in your thoughts-you're all in mine. Lauren

Hi, I found this site a few weeks ago, and have just finished reading all your posts. The first thing I want to say is - I'm just so relieved to find others like me! I can relate to all your stories, and it's so good to know I'm not alone! It is just over one year now since I woke up one morning with vertigo - the full blown, room spinning made me throw up sort! I thought I'd just got up too quickly so went back & slept for another hour or so, still there when I woke again. Staggered downstairs for a drink, but was so giddy I had to go back to bed again. Slept for another 3-4 hours and when I awoke, the vertigo had gone, just had the most horrendous headache - like someone was tightening a vice around my skull. The next day I was so tired - I had glandular fever ( think it's called Epstein Barr now) when I was 18 - am 53 now - and once every 10 years or so, if I got a viral infection, I'd feel very weak, tired and lethargic, but gradually I would get better and thought I would this time! Forgot to mention that 2 weeks prior to this had a sore throat and bad cold. When I went to see my GP the following week, he diagnosed viral labyrinthitis and said it could take 2-3 months for me to recover. Anyway, to cut a long story short, I finally got an ENT appointment last November, got a dianosis of labyrinthitis with eustachian tube dysfunction, have been to the Balance clinic for tests and assessment and am currently seeing a physiotherapist for vestibular exercises. My main problem is the fatigue, which although has improved since last year, has meant I'm unable to work. I was a nurse which meant long hours on my feet and I just don't have the energy any more. I constantly have a feeling of pressure in my ears - the left one especially, and the greater the pressure, the worse I feel. I also get the throat/neck gland swelling but no doctor seems interested in that. I too keep hoping that one day I will wake up and be better!

Maggie.

Maggie, thanks so much for your post. I am sorry you are dealing with all of this as a nurse. Do you find that many in your profession don't know much about this illness? Have you done any exercises for labs? What symptoms are you still dealing with? I am on my 8th month, much better..but decomp'd a bit this week.

Hi Jennifer, I haven't found anyone - co-workers, my GP even the doctors in the ENT clinic didn't seem to know anything. The last doctor I saw in the clinic just said it could take 2-3 YEARS, and that most people eventually recover. They didn't want to see me again there, just said if I have any problems to go back to my GP.The only one who understands is the physiotherapist, but nearly everything I've learned is from this site. I have been doing VRT exercises for about a month now and haven't noticed any improvement. He did say that I would feel worse for a while - and I do! I see him again next week. My main symptoms are the feeling like I've had a drink and feel slightly 'tipsy' with vague feelings of nausea. But the severity of this does fluctuate with the how great the feeling of fullness/pressure inside my head is. I don't know of anyone else gets this, but most of the time my head/face feels so cold, as if there's no ciculation there! Sorry to hear you're a bit decomp'd this week - hope you start to feel better soon.

Hello,

Chris and Sue, or anyone who had lab for over a year.. I have a question for you, do you have any fullness or pressure in your ear and mild pain . I have a lot of pressure in my left ear even after 15 months, the fullness wasn't there as much in the beginning...i don't know why it does that , i still have a lot of dizziness everyday, but the fullness is there almost everyday and it's starting to worry me. Please let me know if you still have those symptoms.

Thanks !

Hi Julie and everyone else with the dizzies, I have the pressure you speak of in my right ear. To me, it feels like something trying to push itself out. When I got Labyrinthitis almost 3 years ago, I also had a numbness sensation on my face. For those who aren't familiar with my situation, refer to page 6 about half way down the page. My otolarygologist-surgeon said that there was nothing more he could do for me and said that I could come in for hearing tests anytime I wanted do and that was about it. I'm still experiencing all the same issues with the exception of vertigo, (which lasted for several hours with uncontrollable vomiting) it's now just periods of being dizzy and unstable. I can't be in crowds and I only go to stores that have shopping carts to hang on to. This keeps me steady and gives me the confidence I need in order to be in public. I don't want anyone to see me stumble or walk like a drunk. Weather changes are horrible for me. I feel so much better when the barometric pressure is up and its sunny and warm. I'm sorry to see that there is a whole new group of people out there experiencing this.

Day 3 of my yeast/fungal treatment: The "die off" has started although tolerable. I woke up this morning with a slight headache and I'm kind of slow and still tired. This is normal so nothing alarming. I irrigated my sinuses with Sinu Cleanse and this always makes me feel better. Really clears my head. I'm actually glad that I'm having some die off reaction. It tells me that I do have a yeast problem. If there was no excess yeast, there would be no toxins to make me feel icky. My sister just finished a course of Diflucan for a yeast infection and her only die off symptom was being very tired. Her yeast infection was localized and any woman who has had this, knows how awfully uncomfortable it can be. She got hers after a course of antibiotics. Hopefully she will watch her diet and yeast overgrowth won't become her problem. I've noticed that no one but Anna has commented on the study from the House Ear Institute. Red flags went up for me when I noticed that a lot of you were getting some positive results by eliminating your sugar intake and eating better in general. This is the exact diet protocol that goes in treating yeast overgrowth. When I read the study and saw the percentages that showed marked improvement with dizziness and improved hearing by medicating with Nystatin (which is an antifungal drug used to treat yeast infections) I thought we might be on to something. Even if the hearing doesn't return in my right ear, just to be able to drive again or walk a straight line all the time is worth it to me. My medical book defines Labyrinthitis as "an inflammation of the Labyrinth caused by a virus or bacteria. What if a third cause is the fungal form of yeast. Anyone who has had a yeast infection knows the inflammation it causes. Those of us who cannot seem to shake this monster after the usual "it's a virus-it should go away in a few weeks" know that something caused this; it is not normal to feel this way and no one seems to offer a cure so we try to connect the dots and get a clearer picture of what has happened to us. That is how it is for me. I will never stop trying to get my life back. I have accepted that I might just be this way from here on out but I refuse to give up hope that we will find a cure. Everyone-Remember the old saying "You are what you eat!" There really is something to that.(I used to drink Coke for breakfast) Take care, Lauren from WA

Hi Julie, I get that too! The greater the pressure/fullness, the worse I feel. Not so much pain - just an occassional 'stabbing' pain behind my ear. I was told it was due to Eustachian tube dysfunction and that it could take up to 2-3 years to get better!! I had it in both ears originally, but after having steroid nasal drops, I woke up one morning and the right side had cleared. Now I am having a nasal spray, but that does not seem to help at all.

By the way, the brief interruption of service until the last few days was my fault. A few dozen spam messages per day had started to get through the filters so I increased the sensitivity by a couple of notches. Unfortunately, this seemed to classify some real comments as spam and I've been so busy that I didn't notice the lack of comments until it was pointed out to me by Lauren.

At that point I manually went through around three thousand messages in the spam folder and published anything that looked like a real message. However, the folder is set to automatically delete spams after a week, and scanning two or three comments per second by hand is obviously prone to error so we may have still lost some comments. I'm very sorry if one of yours was affected, and I've now turned the sensitivity back down so it shouldn't happen again.

Hi Julie (april 24th post)

Initially I did have fullness, pressure & ringing in both ears (with pain in front and below the ear) but this (and the head swelling ! ) has eased with just 40mg ginkgo biloba morning & night . After early acupuncture I used to feel a "draining of the ears" into the back of the throat which to me signified some kind of mucus infection. Am now just bothered with reflux sore throat, coughing spasms and the odd silent migraine. I too am convinced the medical profession are at a loss with what appears to be an epidemic out there ( I personally know 4 people at work and two close friends who have had our symptoms) But after 16 months I feel much, much better 80% - so hang in there everyone and take or do whatever works for you ! sue.

Hi, everybody

Rich Baker - I understand your trouble with this spam filter. I cannot stop thinking, that you are SO KIND for supporting dizzy people on your site. Thanks, thanks and thanks.

Lauren and everybody - I am watching Lauren's antifungal fight with great attention. I talked to my daughter who is a postdoc in biomedical sciences (microbiology and immunology) at Harward Medical School - she said, that many problems in our body can be caused by different spieces of fungus. They grow like crazy even in a lab dish when they have special conditions. They are afraid of acids and they love darkness and moist. I am looking for a doctor in our part of Oklahoma who will agree to treat my dizziness, headaches, sound sensitivity, fatigue, etc.etc. with a new approach - as it is a possible fungal invasion in my body.

Meanwhile I am improving very slowly but steadily being on my no-salt-added, no-sugar, no-caffeine, no-dairy diet with lots and lots of raw and cooked vegetables and low-sugar fruits. I am taking Aspirin plus Tylenol as needed (in fact I have to take them everyday for my headaches). Out of prescription drugs I left only anti-depressant Paxil (20 mg a day) and mild diuretic Dyazide.

Everybody - stay strong and never give up hope!

Anna form Oklahoma (35 years with THE DIZZY MONSTER)

Thanks Sue, Maggie and Lauren for your answers. I hope the fullness, ear pain and blocked ear will resolve itself in a couple of months. Everytime I swallow or I yawn I hear my left ear popping and it can get really annoying. The worse is the dizziness , every morning when I wake up, I just can’t believe that it’s still there after 15 months.I have periods when I get depressed and negative about my situation , but I usually try to stay positive, eat well, take my vitamins, exercise everyday and sleep well, ,everything to get better as soon as possible and get my old life back. Summer is coming so it will help everybody to feel better !

Thanks everyone !

Just wanted to pass on a tip given to me by a doc about problems shopping. It's kind of obvious when you think about it, but I'd never tried it before and it does help. Don't try to shop aisle by aisle,but half an aisle at a time - pick the left or right side, focus on that side only, then go back and do the other side. This cuts out glancing from side to side. Focusing on your own mission and forgetting other shoppers also helps. I've more or less got used to side stepping like a drunk and am past caring what others think. It's horrible when things start to seem too much to cope with and there are times I feel very lightheaded so just have to stop and stare at the floor until it's better. I saw an interesting tv programme with a girl who had a phobia about fainting in public. She imagined the shop would grind to a halt, everyone would rush to watch and paramedics would be called. A psychologist took her shopping and as she watched from a distance, he pretended to faint,ending prostrate on the floor. Two people stopped to check on him, nobody else batted an eyelid. So there is help there if you need it, but not a complete circus. Made me feel a bit less self conscious out and about.

Hello to all; Glad to run upon this website. I was diagnosed with Lab this week, after already suffering about a month. Feelings of dizziness, vertigo, nausea and pressure in my head/ears as all of you have described. I am also not hearing up to par and having trouble concentrating at work. MD prescribed metriclycline this week and it helps some with the motion sickness bue makes me sleepy. So either way, I just want to stay in bed. This really affects a person's life and can be discouraging... but good to know I'm not just crazy-- there are others that have it! DR said to come back in a couple wks if not improved. I'm guessing he will sned me to an ENT if I have to go back. My boss also recently was diagnosed with Lab and ended up goign to a chiropractor for treatment. She swears the therapy from the chiropractor got her over it. I would say anything is worth a try to get over such a yucky feeling.... Anyone do the chiro thing with good results? Thanks!

Just went shopping in Wal-Mart for an hour this morning! I grabbed on my shopping cart tightly, I wore my Bose noise-cancelling earphones, I was quite tired and very slow, my husband shopped for different things in the same store (much more on his list, than on mine). But I DID IT!!! Thing thing was absolutely impossible for me just two months ago!

My progress with HEALTHY EATING has been so slow, but it has been PROGRESS.

Lauren - thanks, I started eating only less sweet fruits - and improved my situation even further. I am intended to visit the candida/yeast specialist in Edmond, OK.

Everybody! Stay strong - you are not alone. Keep looking for answers.

Anna from Oklahoma (35 years with IT, the current bout have started 3.5 years ago)

Anna, that is awesome!!!! You going to beat thing thing!!! I am so happy you are feeling better and getting out and about!!! Its about time girl!!!

Cathy

Some correction to my previous post:

I drove the car to and from Wal-Mart (10 min drive from the house)!!!! THIS thing was impossible just two months ago.

Anna from Oklahoma

I've had morning motion sickness for about 7 weeks now. Some days I cannot leave for work & drive for 3 or 4 hours after I have woken up & then I'm like a zombie at work. I get nausea, dizziness & buzzy ears. Some nights I'll get a panic attack every 2 or so hours. Wake up with my heart racing & ears pounding. Doctor diagnosed Benign Positional Vertigo & has recommended the Epley physio, which I think helps a bit. I've been to have cranial osteopathy (like chiropracter), which has helped me sleep better, but does not seem to be alleviating the morning symptoms. I'm also going through the menopause & find the symptoms are exacerbated by hot flushes. Alcohol and salt are real menaces, particularly together. Driving & being in a car worsens the symptons as well.

Hi, Often this diagnosis of BPV or other labels do not help that much. Did you have any dental work done in the months before this started? Have you fallen or taken a blow (car accident, for instance)? These can cause a biomechanical malalignment. Often we do not remember that we had a filling replaced in the month or months before the symptoms started. I didn't.

I couldn't work, was nauseated all the time and generally miserable. Diuretics helped just a little. I went to many ENTs and practitioners. Finally a good cranial osteopath/ craniosacral practitioner plus a tip top orthodontist/ dentist recognised this as a malalignment of how the teeth come together, then transmitted, through chewing, to the head and eventually to the dura (meninges of the brain) that tug on bones where the ear canals are located.

I was better in no time. It required cranial work inside the mouth and having one miserable filling filed down.

Epley manuever is often very useful if a bit of the internal part of the ear has broken off and is floating/ trapped in the ear canals.

There are many other causes of vertigo, but I write of this one as it is often overlooked.

Oh yes, I am an MD in a university integrative medicine center, and my work is primarily osteopathic and cranial.

Please feel free to contact me.

Bettina Herbert, MD

Kathy, I can sure relate to the morning sickness.... I told the DR if I had a uterus, I would swear I was pregnant. It's that same nautious feeling. Except-- with the dizziness and whooshing! I have troube too, getting ready for work in the mornings. I take shower- then have to lay down for 10 mnutes. Dry my hair- lay down for ten minutes, do my make-up- lay down, etc. It is very frustrating to say the least. I feel it at times when I'm driving, if I have to scan the road from side to side or look quickly. I don't mention this to anyone because they would not let me drive if they knew it was that way. Last weekend, it seemed to "peak" and I was so glad I had read Kim's advice on shopping. Didn't understand till it happened to me-- I was at Wal-Mart and scanning the isles which just really threw me for a loop. I did as Kim suggested and held on to my cart, walked slowly, and focused on only one side of the isle at a time. And it really helped! I am glad to say though, that today was day #3 with minimal dizziness and no meclizine taken!! I felt great! I am praying it stays away. Forever... for all of us.

Thank the good Lord this site exists or I would have gone insane! I haven't been diagnosed with anything yet but have the same symptoms as the majority here (ear pressure, off balance/dizziness, fatigue, lack of concentration, etc). Going on 3 months now. What I find helps to some degree is Ibuprofen. It seems to reduce the swelling in the inner ear, therefore reducing the symptoms. There has been mention of accupuncture which I have had two sessions so far. Unfortunately I wasted my money on that. It helped alot with the anxiety/fear factor but it didn't take away the other symptoms. It may not have worked for me because I couldn't tolerate all the areas where the needles needed to go, only half of them. If you are not sensitive to being stuck with needles, you may want to try it,because I knew of one person who had 3 treatments and her symptoms went away. As for Ginko, I tried it and felt my symptoms increase, but maybe it was my imagination. Has anyone tried any herbal immune boosting combinations?

Just want to find comfort really. My symptoms started 5 weeks a go with losing my balance acouple of times within the first week. The GP said I had Lab and the feeling of the ground moving went away after a week. Then I suddernly got very sick / with extreme nausea the following monday.It was horrific and stayed for hours. This stays with me on and off now. When I'm not feeling nauseous I feel spaced out, wierd and very anxious.I constantly need to pop my ears now as well. I get the feeling I'm going to pass out when I/m out. Shops and restaurants are the worst. I am constantly worrying about what I have got. I have seen a neurologist who says she agress with my GP. I still worry. Nothing seems to help. I am trying accupuncture. Does anyone else get this strange feeling in their eyes. Its so hard to explain.it feels like I have had contacxt lenses in for a long time. I like being outside in the fresh air but hate the inside. why is this? I am going off to buy some Ginko to see if this helps. I just feel so strange and in a world of my own.

Karen

Karen, like you I'm much better in the open air and run into problems indoors. Large busy shops are the worst thing going, I avoid things like parties and clubs. One doc explained that the vestibular system, when not working properly,can't process all the information input via the eyes and ears so gets overwhelmed. This is the case in shops because of people milling round, bright lights, lots of shapes and colours,looking around to find things. I am good at walking at a fast pace while looking straight ahead but trip up if I glance to one side. Pottering around a shop is much more difficult, I guess it's like riding a bike is easier when you're going fast, harder to balance when you go really slow- not that I'd dare ride a bike these days ! I used to wonder if I was getting claustrophobic indoors, though knew I wasn't frightened. It seems the weird feelings, which are very hard to explain, come from information overload.

Cathy - You are funny with your immitation of my usual mistakes in English. "You going to beat thing thing!!!". You made me smile! Thank you for the encouragement. We all need it so much.

And I am continuing to improve!

Lauren and others - tomorrow I am going for "fasting and oral" glucose tolerance blood test. My blood will bee drawn from vein in the morning after 10 hours of prior fasting, then I will be given some glucose solution to drink and the blood will be drawn every hour three times more. All this is quite important as I had two types of hepatitis viruses infection (A and B) so my liver MIGHT have problems in delivering enzymes for digesting sugars. I MIGHT be dizzy because of that. I will keep you informed.

I love you, dizzy folks. Clunch your fists - never give up!

Anna (55 years old - 35 years with IT - grrrrr!)

Hi Anna, I have a bad habit of not reading my writings...TEE-HEE!!! Feel so dumb!!! HAH!

I am glad you are getting a blood test! There are so many reasons why people are dizzy these days. I hope you find the factor of all of this unnessary illness.

I am in my 14th month and I am back to my old life again. I get little blips here and there, but i know that will go someday...I would say im 98-100%...but most of the time I am 99%.

Cathy

Does anyone get this strange eye feeling. Is it eyestrain? but my eyes hurts quite alot.

Karen

Hi Karen, from my experience with this darn this thingm is that the eye strain is a normal symptom...your eyes are relearning to balance. My eye strain was a very bad and made me very tired. It goes away though. Hopefully yours only lasts a few more weeks.

Does it feel that your eyes are out of wack?? Vision wise?

Cathy

Yes, my eyes have gotten worse since my ear/dizziness problem. They ache very badly the longer I stare at a computer or am exposed to various forms of lighting for a prolonged period. For several hrs I'm okay but after about 5 or 6 hrs, the pressure in my eyes builds up and I feel so exhausted and have sinus pressure too plus my anxiety/fear level goes up. This (whatever it is) is the worst thing i've ever experienced and what's worse is how no one at all understands it and i'm always labeled as depressed. I wouldn't be depressed if I didn't have this thing. I would be jumping for joy if this thing would go away.

Thanks Cathy, but what does 'out of wack mean'. Laura I sympathise with you totally.My doctor says I'm anxious and depressed but that is only becuase of this illness. if it would get better and go away i would feel on top of the world. I just feel it i am never going to feel normal. There is always that nagging paranoid self at the back of my mind that there is something elese wrong with me. I'm going into work next week to see if I can handle it ( only for a day). I'm nervous all ready.

Hi Karen, what i mean out of wack, is that do they jump when you look at an oject or get blurred vision. It is all a part of this vestibluar illness.

Cathy

Hi everyone!

First of all I'd just like to repeat what most people have being saying...I am so glad to have found this site!

My symptoms began about 3 weeks ago where i began feeling almost cut off from the world. I was still doing usual things - work going out with my friends etc. but i felt like i was on another planet and my brain was full of wool.

A few days later i started feeling extreme dizziness even when sitting down i felt like i was sinking. I found it very hard to concentrate and was confused. I was also extremely fatigued with a very heavy head. All very worrying symptoms - I am only 19!

I was diagnosed with VL only a few days ago which has put my mind at rest slightly. I am however worried at how long this is going to last!!!

I have however over the last week developed a very odd symptom...My feet are going cold and are turning a very dirty grey. I dont know if this could be attributed to VL, all the lying down im doing or something more serious. Any thoughts?

Laura2, I like the way you describe your symptoms. It's exactly how I feel but whenever i've tried to explain my symptoms, the best I can do is say I have ear pressure and dizziness or that it sometimes feels like the back of my brain and ear drums are being squeezed. As for the grey feet thing, I've never heard of that as being a symptom of an inner ear problem. What does your doctor say about that? Yes, Karen, going to work with this problem is quite difficult. I find that when I take it each hour at a time and after each hour I congratulate myself for getting through it, then it's easier.

Hi everyone, was diagnosed with Labs about 6 weeks ago. Although I've had a whole host of weird and scary sysmptoms the most concerning for me is the anxiety and pnaic attacks. Before I got this I had never had a panic attack in my life and now I'm having them on almost a daily basis and the anxiety is sometimes unbarable. I'm even having all kinds of muscular chest pains which the GP says is a result of anxiety. Just wondering if anyone else has been suffereing from anxiety as a result of this????

As for the grey feet thing i spoke to the nurse and iv got an appointment to see the doctor next friday. She said it could be poor circulation and its made worse because iv not been doing anything for 2 weeks! I'll let u no tho when/if they find out!

Abs, thats exactly what has been happening to me, chest pain (right in the middle of my chest) and going into what could only be described as anxiety attacks. The doctor took a blood test to see if iv got some sort of bacteria in my stomach that could be causing heartburn (made worse by stress) but im doubtful its that. I must admit though they have died down alot since iv been diagnosed, i think it was due to me thinkng it was something more sinister wrong with me.

This really is one complicated infection isn't it?! Id never even heard of it before i was diagnosed!

dear abs, yes, yes, and more yesses. i never had a panic attack in my life either before this crap. i also had right-sided chest pain which i never had before. the anxiety in the beginning was unbearable. it was as though i had no control over it. it was bad enough to make me cry. as the days pass, symptoms should fade. the worse thing is that we don't know when we will be completely symptom free. hang in there. it is over 11 months for me.

megan

Thanks guys, its reassuring to know that the anxiety is linked to the infection. I'm starting to find it easier to control by reminding myself that everything i'm feeling is part of the virus and not some other underlying and dangerous cause. But it is difficult to not panic when i suddenly feel light headed or weak or get pressure in my head ect ect. I think its also made worse by the fact that one minute i will feel fine and then suddenly the symptoms are back.

As for the chest pain, I get it on both sides of my chest and in the middle, sometimes its a sharp pain and sometimes it feels like muscles moving but I have noticed it improves when my anxiety levels are low and gets worse when they are high. GP says it will go away eventually.

My latest symptoms are ice pick headaches, where it feels like someones stabbing me in the head with an ice pick. They only last a couple of seconds but are very frightening. I've been told there nothing to worry about and probably are not connected to the infection but they only started after I got the infection so just wondering if anyone else has had them?

It starting to seem that the dizzyness is the least of the problems that come with the infection!!

Hi all,

What a wonderful discussion!

I've had some odd symptoms for a week or so and concluded that I probably have VL. I'm scheduled to see a doctor on Friday to find out for sure.

Fortunately, I seem to have a relatively mild case, but I wanted to check in with you guys about something first. A lot of you have talked about severe episodic vertigo. But, my symptoms seem to be more constant that episodic. I definitely feel a bit imbalanced when on my feet -- like I'm a bit drunk without all the fun parts. And I feel a *slight* spinning sensation when I'm doing things like walking at night or arising from bed. But I'm not near the point of nausea, and am able to do most ordinary things without incident.

Put a bit differently, on a scale of 0 to 10, my Veritgo/balance symptoms are sometimes a 3-4, and sometimes a 1-2, but never a 0 and never much more than a 5. It's more constant than episodic.

Is this consistent with the course of VL, or should I be looking toward something else? The other symptom I have which leads me to think its VL rather than some other cause of vertigo is a mild ringing in my left ear.

thanks, Nate

hi abs, another thing i have now that i didn't have are what i now know are migraines-and probably vestibular migraines. i rarely ever even got a headache before this!! but what i feel is a vice feeling on the lower left side of my head, deep into my left ear, and partially into my neck. it feels as though that part of me is being crushed. it is accompanied by dizziness and it lasts for approximately 2-3 days with the symptoms peaking and then lessening over the days. i said the same thing you did regarding that the dizziness is the least of my worries. the symptoms are so damn scary. i thought i was going to die at the onset of this as i feared i was having some sort of stroke. the thing that bothers me most is that, although i am much better, i still feel very weird in the head. thinking that there is something wrong with my brain does provoke some anxiety. keep in mind that you are dealing with 2 kinds of anxiety-the kind brought on by this disorder which you have no control of and the kind the comes with just plain worrying about when this will go away, when will i be normal, when is the dizziness going to stop, etc. try not to let the anxiety take over as it will slow down your road to recovery. i know it did mine. you just hang in there. it sucks but it ever so damn slowly seems to fade. you may want to research on the web the connection between inner ear disorders and anxiety as there is so much evidence that the 2 are closely related. also just for the heck of it, look at your lifestyle, especially diet. so many folks on this site have been helped by changing eating habits. it has helped me feel better as well-no caffeine, no alcohol, very low salt, no processed foods, lots of fruits and vegetables. stay as active as you can. if you overdo it, you may get severly dizzy. going for walks seems to help a lot of people. take care, megan

EVERYBODY on this site - old and new.

Read CAREFULLY AND ATTENTIVELY of what Megan wrote as of May 9, 2007: "it has helped me feel better as well-no caffeine, no alcohol, very low salt, no processed foods, lots of fruits and vegetables. stay as active as you can. if you overdo it, you may get severly dizzy. going for walks seems to help a lot of people. take care, megan"

Megan is absolutely right! I AGREE completely, because I too feel better on the same diet and lifestyle! Keep in mind, that I have delt with IT for 35 years.

Lauren from WA (smart lady!) and others - On May, 29 I scheduled an appointent with a doctor - specialist in Allergy/Immunology and fungal infections. Her office is in Edmond, OK wich is not far from our town. My husband will drive me there. It is important, that the doctor agreed to have a look at my complicated case. I will let you know about how it went.

Meanwhile, I am doing all this good DIET and WALKING and I am trying my best not to give up. I am still very emotional, tense and irritable (who wouldn't?!!!)

Hold on everybody!

Anna

Well, went for a haircut today and just doing that was hard. Sitting there with my dizzy head and pressure in the right ear mixed with the pressure in my eyes from the lighting was almost too much for me to tolerate. Fortunately the hairdresser was quick. But what i'm bummed about the most is how my friends call and invite me to do things that I can't do. Simple things like going to movies or driving somewhere to meet them sets my anxiety off. How is it that some people are helped by anti-anxiety medications when this is an ear thing. How does this medication clear up the infection or whatever it is?

Laura,

Anti-anxiety meds help alot of people with inner-ear disorders. This is because many of them, (benzos) in particular act on the central nervous system, numbing the effect of the signals from the brain, which tends to mask the dizzy feelings. Its very similar to Drinking alcohol.... Now in any case, lets say you were taking a anti-anxiety med that did not affect the CNS. This would also be beneficial since many who suffer from inner ear issues also have anxiety issues, and removing those issues is said to help compensate or heal.

Sam

Thanks megan. I haven't suffered from that type of headache...yet. But I do get lots of pressure in my head like someones pushing it and around my ears and temples.

My diet has changed a lot since I got this and it happened by accident. I just don't want to eat greasy or salty ect food and I find that chilli really sets me off. I've also quit smoking as a result of this. In the beginning I was still smoking and i noticed that sometimes it didn't effect me and other times it made things so much worse and triggered the anxiety so now whenever I want a ciggarette I just think of the anxiety attack that will follow!! At least some good has come of this! I also find walking helps its just a case of being able to get up and start walking when I feel weak and my balance is off. And also sometimes my heart will start thumping if i try to do too much.

My anxiety levels are improving, whenever I start to feel off or get a new scary symptom I just try and control my imagination or it will run wild and I will have a panic attack. I am still suffering as a result of anxiety though.

My latest symptom is eye pain. Its weird, it feels like my eyes are really strained but its not strain because even when their closed I can feel it. It comes and goes. Optician said my eyes are fine and GP said its not related to the virus and my eyes are probably not producing enough tears or something and gave me a perscription for eye drops. Has anyone else experienced this? Its realy uncomfortable.

Nate- i have no idea if you have VL or not. Although the way your feeling sounds a lot like how I'm feeling now, I do get worse than that and at the beginning I did suffer from vertigo and could barley get out of bed. Best to check with a doctor.

Thanks Sam. That makes sense but I'm weary about taking them because I fear i'll feel like a zombie. I've tried anti-depressants in the past and they made me feel dizzy, headachy and spaced out, more so than I feel now. Does anti-anxiety medication have the same effects as anti-depressants? Yes, Abs, I've been getting eye pain but only in my right eye. It feels like there is a big dry spot on it and at night, I have partial blindness in that eye. I had the eye thing years ago and I find it helps to take an anti-inflammatory.

Hi all.

I remember the lowest point(s) of this illness – during that time, I loved to read about people who improved or got better. It really did give me a glimmer of hope.

So, periodically, I like to return the favor.

I have been feeling better for several months now with some minor occasional blips. I just wanted to tell everyone that this does get better. It took about 2 years for me but I think I had a particular bad case of whatever this is.

The dizziness decreased over time (with VRT) and has become an off-balance feeling which I can deal with ok. The dizziness in the past was horrible, very bad and constant - mixed in with true, whirling vertigo. The vertigo used to last for 5 or 6 days but the last time only lasted for a few hours. Not bad. No real vertigo for about 8 months now. The constant dizziness, head buzz, fog, neck pain, ear clog, tinnitus, etc. was brutal for over a year. Then ever-so-gradually started to go - then come back - then go - then come back - over a period of hours or a day. The ups and downs were also brutal but it kind of signified that something is trying to give and I hoped the good times would get longer and longer, which they did.

At this time, the tinnitus almost went away - it was very bad for the first year or more, then gradually decreased - it flares up here and there but no big deal. It used to "try" to drive me crazy (if I let it).

The neck pain decreased with exercises - tough at first to get through the pain but easy now. This worked for me but you should be very careful with exercises – talk to your doctor first.

Over time, I figured out the following has helped me: Low-sodium diet (very important) neck, jaw, face and shoulder stretching (several times daily - very important to me) plenty of water everyday diet changes (healthy only, no junk, low sugar) no alcohol, nicotime fresh veggie/fruit juices daily with my home juice machine lipo-flavonoid pills vitamins Zyrtec (daily allergy med really helped me – I still take this) rest when possible relax the mind, etc. Dramamine 2 (the "purple" container which is really Meclaszine). I take this when I feel something really bad coming on (almost never anymore). Sudafed tablets (the drowsy kind). I take these as needed but hardly at all anymore.

I also found that if I moved my head around a lot while walking or jogging a bit, it helped in the long run although it was extremely hard to do at the time.

I have tried accupuncture which I believe helped a lot. I tried an allergist and neurologist (tried migraine prevention meds and they seemed to help last year), a neurotologist, all sorts of tests (I’m sure you know the ones).

So, please hang in there – it is horrible but it will get better. I do believe you have to help yourself in addition to seeing doctors, etc. In fact, I think my self-help got me through this. I also view my illness as a wake-up call which resulted in major life-style changes that will be lifelong for me.

You will get better – but you need your help to do it.

Hi, everybody

Bealte Mark - What a great post from a person who really knows this long-term problem. Your allergy seams to play a big part in your past horrors. I remember you very well, Beatle Mark - you live in New York - a very tough place even for a very healthy human being. Not talking to us, dizzies.... Great to hear, that you improved so tremendousely! It is an inspiration for all of us.

Dizzy people - neverlose hope! Help yourselves!

Anna from OK

hello Meagan I have the migranes you are talking about,always have only the vertigo is relatively new, the acupuncture seems to help the migranes, but my doctor prescribed imitrax and that works really well for me with no side effects except for the usual post migrane tiredness, crankiness.Glad to hear it sounds like you and Anna are doing much better. Thanks Rhonda

So hello again dizzies, I haven't posted for some time now but I have tried to read a lot of your posts.

Hell this is a struggle, I know we all have some pretty bad times with these dizzy monsters but there really are worse things to suffer from, doesn't feel that way when you have this nonsense though eh?

I am still struggling with my monster too, been told there is nothing else that the ent can do for me now, the professor I saw the last time said it seems like the balance nerves in my ear must be damaged after all the different infections and stuff I have hade over the years, also they can't cut the nerve as I have problems with both ears and compensation may be impossible.

Just to try and help some folks if I can, This thing will give you all sorts of other things to deal with, clumsiness, numbness, anxiety, vision problems, depression and many more besides, I could sit and cry if I thought about it how long I have had to suffer with this, 30 years and still counting! I am determined to be as cheerful as I possibly can through whatever I go through now, I may never be fully well but I can still smile and intend to whenever I can, so this thing can go and take a running jump I will not let it depress me anymore.

You will all find a way to cope, your own way is what is best for you, all of us are a little different and find some things help were others don't, as for the doctors etc remember NO ONE KNOWS EVERYTHING ABOUT ANYTHING! think about it and you will realise it's true, we know more than the doctors and we can't cure this thing quickly so what chance can they who do not feel it have?

I can read all the books on this planet about motor racing and become an expert without even sitting in a racing car! that's what some doctors have managed to kid us about too they know all the theory but not the reality so listen to your own body, it will tell you what to do and when to do it if you take the time to listen.

Good luck and happines to all of you.

Mick.

Thanks, Mick, reading your post made me smile.

I went to see an ent chap last week who asked a couple of brief questions, did two easy tests, and said " You've definitely got balance problem, it's ear related and I'll send you for more specific tests and to rehab. " I was stunned! After years of " Don't know," and " It's probably nothing," there was this man seeing my problem and offering help. To be fair, the last neurologist pointed me in his direction. Several visits to the first neurologist plus a stay in hospital under him resulted in " I have no clue what the problem is " How can you get such different responses from people ? Lets hope rehab is of some use. I'm very thankful that my GP has always been sympathetic and willing to listen, despite not knowing what the problem was. I've bent his ear on many occasions to let off steam. Work is hard at the moment. I've recently gone back after six weeks off with a bad patch. Half the time I'm covering up feeling spaced out and it gets very wearing. Having to do things more slowly than before but I'm still clearing my work, so I guess that's an achievement.

Mick - your cheerful post is amazing! It made me smile (as well as Kim). It is so hard to cheer up people around you when you are in such pain both moral and physical, in such awful discomfort. You manage to do so. THANK YOU!

Of course - you just SHOULD become experts in our trouble.

I am doing slightly better a little bit more. One tiny step at a time. My mother says, that my patience is "endless", I start thinking, that it IS endless....

Anna from OK (35 years with IT - on/off)

Hi everyone, just an update. I haven't had a panic attack in almost a week!! But I have been very close a lot of times and the anxiety does still get me down but I guess it means I'm learning to control them. I'm still suffering from dizzyness, tiredness and weakness, head pressure (especially at the back of my head) sometimes it feels like my head is about to explode (anyone else get this?), ear ringing, ear aches, eye pain ect ect. I'm having blood results because I guess the GP thinks there might be something else going on, he was surprised when I said it had been over 7 weeks. But don't think its goin to come back with anything. I'm trying to continue life as normal bt it is very difficult. How does everyone else cope with getting on with things?

Hi again fellow dizzies,

Anna and Kim, I try to have a laugh as much as possible, Saves me crying anyway

Just to add a little info if possible for some of the symptoms some of you may be having from this vestibular thing, The aches and pains may come from being less active because of the limits with labs etc on your activities, The fatigue is from having to concentrate on keeping your balance, which normally is a natural motion, with vestibular problems such as labs etc you spend a lot of energy just staying upright.

The anxiety and panic attacks will subside a bit when you get used to the symptoms of being dizzy a little more, I used a natural product called kalms and it was a great help, I take only serc now that helps me but won't help everyone.

Rest as much as you feel the need to, this will save your energy for helping you with your balance, try to relax as much as possible too, I used relaxation tapes for quite a while and even though at first they didn't seem to help I started to fall asleep during them after a few weeks use :o)

Reduce sodium intake from either salt itself or sodium products such as some indigestion remedies etc, they can have high sodium in them to quell the acid in the stomach.

Do your best to get proper sleep, this is the only time your body has to heal itself, all of the time you are awake you are using more energy than when you are asleep.

Remember, there are no magic potions for this it will take time to start to feel better, all of us heal to a different time scale but it will happen be patient and as strong as you can be, again we are all different, keep your sense of humour and don't get depressed if you can possibly help it, depression takes ages to get better from.

Good luck and good health to all of you, and keep your pecker up! :o) Mick.

Yes, having a sense of humour helps as I now refer to my condition to friends as 'zombie-itus' But the spaciness, head-pressure and fatigue I can handle to a point, but this anxiety is making me feel limited. What activities do you find makes you feel most anxious? For me it's driving, being on crowded busses and anywhere where there are loud noises. I wish I lived in a small town or somewhere where everything is slow-paced. Living in a busy city intensifies everything.

Hi all,.. Its been great to find this site.. It seems that so many have also been going through what I have!

I had Labs about a year ago and have just finished a course of phsio for my residual VOR problem. I am loads better, but am having an off day today. I've been feeling a bit strange for a few weeks actually! I dont think its coming back, I think its just a blip.

Just a quick question... does anyone find that stress kicks their symptoms back off again?? I am finding that if I get myself uptight I am all over the show for a few days... but it does eventually settle. I am starting a new job next week and I think the anxiety may be what has kicked this episode off. Dont get me wrong, I'm not back at gripping the floor to stop myself falling off stage, but I continually feel like I am on a ship at sea. I have had to have a medical for my new job and have told them about it, but I hope the stress of a new job doesnt knock me back!

Its been great to hear all your stories, as you have all helped me to explain to others how I feel, as I sometimes lack the words.

Take care all!

Hi Mick

Your posts are great, so refreshing! I can't believe you have had 30 years of this junk. Poor you!

I'm at two years with it now and having a bit of a relapse at the moment. I had four really good months before this relapse and I'm back struggling with the dizzy monster again! It is so frustrating and I hate to take time off work because I don't think people(i.e. my boss and others), can even be bothered to understand what you are going through.

I laughed when you mentioned the doctors, what the hell do they get paid for? We DO know more than them about this thing and it is such a simple thing to research, there is so much information on the internet! I go into the surgery and they start getting out books and tapping stuff into their computers, and I sit there thinking, 'I could do that!'.

I believe there is only one way to beat this thing, look after your body, cut out all the junk, and plenty of exercise. I walk my socks off on a regular basis and though it can be tough at times it makes you feel much better and helps your brain to compensate. I have been getting a little complacent of late because I was feeling much better, not walking so much and eating sugary stuff again and look what has happened, it has come back to haunt me again.

But I know what I have to do, I have to confront it and get it out of my life again or at least to an acceptable level.

Take care everyone

Sandie

hi eveyone i have had labs for 8 weeks now. just when i thought i was feeling every so slightly better i got a migraine and have felt really dizzy, spced and tired ever since (4 days) IS THIS NORMAL WITH LABS. I am due to go for a neurology appointment in july but just feel paranoid about 'other causes' of these symptoms. All i want os some slight improvement, and when i get itgo back ten steps. It is the strangest feeling a get in my head. i feel very surreal, happiest when i close my eyes. i could also sleep all day. Hope to bring better news bext time,

Karen

Hello Anna, Meagan, Everyone I found some interesting websites that have to do with viatamin defiencies http://www.biblelife.org/vitamintoxicity.htm I finally found a doctor (I have posted this before) that finally found a way to get rid of my symptoms she also suffered from vertigo and used the same treatments herself.I went to get acupuncture to get rid of the soar neck,shoulder, and that (like Meagan and I have been paranoid about set off my vertigo again, and I went back, she said the acupuncture would not get rid of the vertigo however she prescribed niacin and B6, with some herbs( she is a master herbalogist as well.) I also found another interesting website http://chetday.com/vitaminbdeficiencies.html Some of the vitamin defieciencies in both websites seem to match the symptoms everyone is complaining about. Hope this helps, Rhonda

Hello Karen, Yes I have had a migrane Or felt symptoms for days at a time and then feel exhausted the next couple of days You feel like you do after you have had the flu or cold for a while. Worn out tired Lindsey Yes, I have felt that stress (whether it is brought on by ourselves or outside forces)

Hi Mick

Reading through your post I notice that you mention serc. Please could you tell me a bit more about how you feel that it has helped you, how much you take, how long it takes to start having an effect, how long you have been taking it, etc.

My doc has prescribed me serc too. I have been taking it for just over a week and I did start to feel better. I do have asthma and it started to get worse so I stopped for a day as it has to be used with caution in asthma patients. My balance symptoms got a little worse so I started to take them again. Would it have this effect as quick as this or is it just coincidence. How do you feel if you come off them? I am also having my house painted so this could have explained the asthma getting worse.

Thanks Mick.

Sandie

Sandie, I have been taking serc for over three years now, I took 3X16mg a day at first but I have now cut it down to 2X16mgs, I have tried to stop it altogether but I get very very dizzy after about 5 or so days, so I simply take it again and I then feel better after a couple of days, Serc is supposed to act quite quickly, some people take it only when they feel dizzy spells starting up.

Please remember Sandie I have had many things as well as having full blown labs 4 times in a year! cholesteatoma of the left ear leading to a radical wall down mastoidectomy, right ear otitus media and mastoid etc so as I have said before, not all things are the same for all people, You will know if something is of help to you or not, for example some people can't tolerate aspirin but others swear by it, so see how you go on with serc and if it doesn't help go back to your doctor. And good luck.

Just a little mention to everyone who uses this site, I think we should all make a small donation to the rich's tips jar, seeing as rich as helped us all so much over the time with this site he has more or less given over for us to use and get help from.

So thanks again rich, you are a true gentleman.

Mick.

Dear All,

I am having a bad day today.. Feel like I have gone back a number of paces. Sometimes I find doing exactly what you dont want to do can help! I have had very uneasy, unstable feelings today and the head feels like it is wobbling all over the place! Today I have decided to have a go at confronting all my triggers head on!

Have just made myself walk out of the office through a shopping centre (crowds, artificial lighting) to get my lunch. I called into a supermarket (Busy shops) to get some gingko biloba. I did this in my heeled shoes (body vibration aggravates the ears) and managed to humm a song to myself (vocal vibration) to get myself back to the office. I had managed to get through 3 verses of "jerusalem" before I got back! Strangely enough, I have come back, settled, and dont feel so bad! It was very uncomfortable doing it though!

I have noticed alot of people complaining here about feeling eye strain? This is exactly what I had. Basically, the physio told me that my vestibulo-ocular reflex (VOR) was out of synch due to my labs. When the balance mechanism gets damaged, the eyes are working harder to take in more signals to the brain in order to compensate, hence they get tired easily. Alot of my physio was gtting my eyes to work in synch with my balance mechanism and also removing my sight so my other senses could learn to compensate too.

I strat my new job next week and am worried that it will cause me problems. I must get back to my healthy eating and exercise regime though - I think that really helps.

Hope you are all ok...

L.

Sandie, further to your question about serc, it really is as Mick says a case of judging for yourself. I tried serc 16mg 3 times a day when advised to come off stemetil,( which actually was a help regarding dizziness. ) It was the hardest two weeks I'd had in a long time waiting for the tablets to have any effect. Once they did start being of some limited help, my ears started to get very uncomfortable, then the sides of my neck,which I guess may be where the eustacian tubes are. Add to this they upset my stomach, so I was not a happy bunny. After three weeks I gave them up, it took another week for my ears to settle down. Now I take stemetil on a very limited basis when having a bad day, like having a safety net I suppose. One of my work colleagues swears by serc for her problems and has no side effects from them. It's probably best to keep an open mind, you will be able to judge how things are for you very soon.

Hi, all

Mick - you are ALSO a true gentleman as Rich Baker are. It is great that you mentioned a donation issue. I feel a bit ashamed that I never payed any attention to the Tips Jar. Of course I immediately rushed to make a donation to Rich's website, but... Well - I have a slight problem with payment through PayPal.com They told me, that I had already "RECEIVED" instructions on my forgotten password, but in reality I have not received those instructions from PayPal.com. I will wait - maybe the time difference of USA and Europe is the problem as PayPal has European assignment.

Rich Baker - thanks for holding this webpage!

Anna from OK

Thanks for the sentiment, Mick and Anna. However, I think I'd feel quite strange receiving tips for moderating this comments thread when other people clearly contribute much more to the community that's formed in it. The "tips jar" is really there just in case someone ever feels that they'd like to give a tip after reading one of my articles. (So far nobody has :)

hello....most people probably know me on here i used to post alot...i was diagnosed 28 months ago....i have improved a tom but i am still not 100 percent...i went to a ENT about 2 years ago and they ran the tests with the ears and said i have labs...ive had mri's cat scans blood work etc and labs it was......im hoping one day i will be back to normal...i was told i will be one day but it hasnt come yet......im learning to live with it but i do still have a bad day here and there......any questions please respond

Thanks Mick and Kim,

I have actually given up the serc after 2 and a half weeks as I do not feel they are doing me any good. My balance was actually getting worse and I too have had an uncomfortable stomach. I have been off them for 3 days now and my stomach still feels weird. Also, what concerned me most was that my asthma has been much, much worse and I have been quite scared at times. I have only suffered very mild asthma for years, but a couple of months ago it got a little worse and I was given a preventor inhaler to use twice daily. Serc is to be given with caution to asthma patients although my doc seemed to think that it would be fine. However it has been much worse over the last 10 days or so, so that is the main reason I have decided to do without the Serc. My balance has been much better today, maybe a coincidence I don't know, and my asthma has been better.

Kim, can I ask how long you took stemetil for? Thanks for your input.

Sandie

Hi, I wanted to share my story and see if I am headed in the right direction. I went to work 1 week ago (in a school) and started getting dizzy, I tried to ignore it, hoping that it would go away, but it didn't. About 30 minutes later, I had to sit down as everything was spinning around me. When I was sitting, I felt as if I was going to fall, a bit nauseous, my hands were trembling and I was very flushed. My co-workers called 911 I truly felt that I was going to die! and I spent the day at the ER, they did a ct-scan and some blood work and everything came back normal. The ER doctor said that I have Vertigo or Lab as you all call it, I also saw my GP who confirmed the diagnosis. I am "fine" when I am sitting doing pretty much nothing, hard to do when I have 3 kids. I did try to go back to work yesterday, but as the morning progressed I continued to get dizzy and a flushed feeling came over me. It seems when this happens that I am having an out-of-body- experience. I have no ear pain or ringing, only a headache that is like a band in the back of my head. My questions are? 1. does this sound like true Lab to you, 2.should I have an MRI done to rule anything else out? 3. Has anyone seen a chiropractor for this?, I have one that has helped me with some lower back problems, I have been reluctant to see him, thinking that he might "stir" things up in my head and make things worse. I would appreciate any help or direction anyone could give me. I truly cannot imagine going for months like this!!! Thank you, Nancy

Hi, all

Lidsey - high shoe hills are quite bad to keep your balance. Your back and neck muscles are tight enough even without such awfully dangerous things as high shoe hills. I would suggest you to wear flatter soles for awhile.

Sandie - serc (bethahistine) did not help me even a little bit. Some people say, that it DID help them. Who knows, apperently their problem is different....

Rich Baker - do not be shy, boy. Just to keep this page from the flood of spams takes a lot of time....

Anna from OK

Hello ,

This is a question for Chad who was diagnosed 28 months ago. I have posted as well a couple of time here, it's been 16 months for me , i am better than i was but i still have a feeling of constant dizziness that have been left, i have couple of not so bad days and days where it's more difficult for me..my question is did you or do you still have fullness/pressure feeling in your affected ear, mild pain and blocked and popping ear. I have been dealing with that also for over a year and I am wondering if you did as well ??

Thanks , Julie

Hi Sandie, sorry to hear about your asthma, it must be horrible for you. I took stemetil for way too long as it turns out, over fifteen months. Initially my GP was reluctant to prescribe anything, preferring to " wait and see," but after a year I was desperate for something to change and more or less begged for some medication. He said being on stemetil long term was no problem at all. At first they seemed to be a big help and certainly took some pressure off at work and round shops with regard to dizziness, though not much effect with balance. The second neurologist I saw advised me very strongly to come off the tablets and change to serc as stemetil can have Parkinsonian type side effects,eg tremor, in long term use. He was very surprised that the first neurologist and ent hadn't picked up on this. ( Less surprised by my GP.) Coming off them was remarkably easy, I had been pretty worried at the thought but it didn't make as big a difference as I expected. I do keep a few as backup but in a way it's more of a psychological thing. These days I'm much better at recognising when my symptoms are building up, so I change what I'm doing instead of trying to slog on. At present I don't use regular medication, the second ent didn't think any would be of any real benefit. Gets more complicated when you see more docs, as their opinions differ. That's all they are-opinions. It takes trial and error to find what's best for yourself unfortunately. Hey ho. We'll get there in the end. Stay positive.

Dear Nancy, Get a 2nd opinion. There is no test for labs, only guess work so the fact that your GP is confirming the diagnosis probably means he/she doesn't know crap. So many things cause dizziness. The band feeling in the back of your head almost sounds like a migraine which can cause dizziness as well. Labs? Maybe but usually there are some "ear" symptoms. Let us know. Megan

Hi Kim

I was on stemetil for a couple of weeks in the early days but realised due to my own research that they are not at all good in the long run for this type of thing and the side effects can be horrendous with long term use. I have however noticed over the two years that I have had VN that quite a few people manage to get it from their docs long term. I myself have a repeat prescription, which I have never used.

At the moment, after dropping the serc I am feeling much better both with the asthma and the dizzness/balance. Hopefully I will be back at work next week.

I am of the belief now that nothing helps this thing other than keeping active and eating a healthy diet. After the initial five month period where I really was quite ill, I have had a few major 'blips' but have recovered within a few weeks each time. I now accept that this is probably the way it is going to be and be thankful that in between I can actually have a near normal life. I can cope with the minor symptoms I have! And, although they are horrible to bear, a lot of people are much worse off and that is what I keep telling myself.

Take care

Sandie

Just thought that I would post another experience of mine. I went to see my chiroprator yesterday, 5/25, when I walked into his office, I still felt uneasy as well as "foggy". I explained my situation to him and he said that my atlas vertabrae (1st) was probably to blame. He did some ultrasound on it as well as my neck, and adjusted my neck. When I left his office, I felt 80% better, my "fogginess" was gone, I felt better walking and I wanted to hug the dr. The symptoms seemed to have had almost dissapeared. I slept great. When I woke up this morning I continued to feel wonderful. BUT.. as I continued with the morning my old symptoms have returned, along with the awful pain in the back of my head. I do have an appt. with my ENT on Wednesday, also another appt. with the chiro on Tuesday. I just don't know what else to do. HELP! Megan, thanks for reading my post and replying. Nancy

HI EVERYONE,

I just found this homepage today. I am sooo relieved to read about so many different experiences about this horrible condition. I thought I was a "special case" since I've had Labyrinthitis for 5 months now. My doctor told me it should only last for 2 to 10 weeks! It's actually the third time I've had this. The first time was in 2004, the second in 2005, and this time since December 2006! The first two times it lasted for roughly a month, so you can imagine my frustration, when I hit the 5 month mark. I live in Europe, Denmark, but am from Rochester, NY. Last December I was supposed to go home for Christmas, and just a week before my trip the horrible Labirynthitis came back. I was forced to cancel my trip - my doctor told me I should not fly. I've also had different symptoms different from the first two times: panic attacs, funny flashes of light in front of my eyes - specially when I read, nausea and "ears full" sensation. I wonder if anyone else has had the eye symptoms. I would also love to know, if anyone has tried to fly over the Atlantic while having this condition, because I am really home sick, and would very much like to go home for my mother's 60th birhtday in August. I appreciate any help from any of you who have experience with this - specially with flying.

Thank you for you feedback Patricia

HI EVERYONE,

I just found this homepage today. I am sooo relieved to read about so many different experiences about this horrible condition. I thought I was a "special case" since I've had Labyrinthitis for 5 months now. My doctor told me it should only last for 2 to 10 weeks! It's actually the third time I've had this. The first time was in 2004, the second in 2005, and this time since December 2006! The first two times it lasted for roughly a month, so you can imagine my frustration, when I hit the 5 month mark. I live in Europe, Denmark, but am from Rochester, NY. Last December I was supposed to go home for Christmas, and just a week before my trip the horrible Labirynthitis came back. I was forced to cancel my trip - my doctor told me I should not fly. I've also had different symptoms different from the first two times: panic attacs, funny flashes of light in front of my eyes - specially when I read, nausea and "ears full" sensation. I wonder if anyone else has had the eye symptoms. I would also love to know, if anyone has tried to fly over the Atlantic while having this condition, because I am really home sick, and would very much like to go home for my mother's 60th birhtday in August. I appreciate any help from any of you who have experience with this - specially with flying.

Thank you for you feedback Patricia

Kim, you said you were on Stemetil for 15 months and it did not help with your balance, just with your dizziness. Can I ask what your symptoms were when you came of it, did the dizzines return? This time I have been really dizzy and sickly at times and wonder if taking stemetil for a week or so would have any effect or if I would be just as dizzy when I stop taking it. If that is the case I cannot see the point in taking it, and might as well wait it out. I am just looking at ways of maybe being able to go back to work At the moment it is not with me constantly, but when it does hit (several times a day) it is horrible, so I can't take the chance of going back just yet. I am so sick of it all I really start to wonder if something more serious is going on but I have had it for over two years now so if there was anything it would probably have shown by now.

Sandie

Just a thought,

I had been feeling better by Friday last week, but on Saturday night had a chinese takeaway and felt really dizzy and off balance on Sunday and Monday, today I feel better. My husband mentioned it might be the MSG so I decided to do a little research.

My god, this stuff is in everything! I have always said on this site that you must eat healthily and now I stand by that even more! Take a look at http://www.msgtruth.org/dizzy.htm, it's linked to loads of stuff including inner ear problems.

I know for a fact that MSG is added in large doses to chinese food and looks like all takeaways, i.e. mcdonalds etc use it too. It is also in everyday things such as crisps etc, take a look in your cupboards.

Sandie

Sandie,after a chat with my doctor I decided to come off stemetil and not use any tablets so that I could take stock of what might be side effects from anything I was on versus "real" symptoms. He knew I was pretty nervous about doing this and signed me off work for two weeks. While at home and pacing myself with what I did at particular points, I can't say I noticed a dramatic difference in dizziness. I was a bit surprised as previously I'd dropped the stemetil on about three occasions as an experiment and was a lot more prone to dizziness. Once I went back to work, things were more difficult, I have to just walk out at times while my head clears. This isn't always possible and I get very uncomfortable, which is making life a bit of a chore. I've already cut my hours down to four mornings so there's not much left to cut ! I still have good days and bad days the same as on the tablets, with no apparent pattern. It just seems to be part of the condition. It's quite nice to know I don't need to rely on medication. Tomorrow I finally get balance tests so it'll be interesting to see how that goes.

NO FULLNESS IN MY EARS....BASICALLY JUST FEELS LIKE MY EYES WONT ADJUST...24 HOURS A DAY I FEEL LIKE THAT...I HAVE HAD THIS TWICE BEFORE ONCE THE FEELING OF THE EYES LASTED 4 DAYS THE 2ND TIME I HAD IT IS LASTED LIKE 3 WEEKS......NOW ITS BEEN 28 MONTHS...I THINK IT LASTS LONGER THE MORE YOUR EAR GETS DAMAGED........EVERYONCE IN AWHILE I HAVE A BAD DAY AND BE REAL TIRED AND OFF BALANCE REAL BAD FOR ABOUT 3 DAYS BUT THEN I COME AROUND......THIS IS A HORRIBLE DISEASE ADN EVERYONE IN THE WORLD THINKS IM FINE BUT THEY DONT KNOW....AFTER A NIGHT OF DRINKING I AM SO OFF BALANCE ITS UNREAL.....BUT IM BETTER THAN I WAS 2 YEARS AGO!!!!!!!!!

Hi, dizzy folks

Sandie is absolutely right about ILL EFFECT of MGS on the inner ear functions. It is a proven scientific fact. And MGS is everywhere. Folks - loook at the labels and try to find somthing with a label NO MGS. Do not eat at Chinese restaurants.

Update on my situation. I visited a very good and very rare doctor not far from the place I live. She is a specialist in NUTRITION and IMMUNOLOGY/ALLERGOLOGY. She was amazing! She spent more, than an HOUR (!!!!) on our first visit. She sent me for several blood tests after which WE will decide TOGEHTER what to do next. I will update my situation in a week or so.

EVERYBODY - do your own research and never-ever lose hope.

I have been doing BETTER with DIET changes month after month.

Anna from Oklahoma (35 years with Mr. DIZZY MONSTER).

Hi

Kim, how did the balance tests go?

I was at the balance rehab centre a few times in my first year of this illness but feel like I got nowhere. I was discharged after a couple of visits as they decided I was coping well enough myself and didn't need further help. Excuse me, but I don't think I was offered much help in the first place! I feel it was a waste of my time as everything they told me I had already researched myself and put into action.

Anyway, I went to the docs yesterday and she said I should take the stemetil for a couple of weeks and see how it goes. I have always steered clear of this but feel I need something at the moment as my life is just awful, dizziness and nausea playing a large part this time. I took a few yesterday and am feeling much better today though still off balance. She has made me an appointment for two weeks time (I am also takin antihistamines til then), and she says she is going to go through all my hospital notes etc and try and get me sorted. Hey, does somebody care at last, I hope so!

I also cut my working hours from 4 days to 3 days because of this illness but I work for 9 hours per day which is real hard as I am on my feet all day so I can't contemplate working at the moment.

Has anyone been finished by their employer over this illness and taking too much sick leave? That is my next worry as I do not want to lose my job but what can I do?

Sandie

Rich Baker (owner of this site) - if you received a donation into Tips Jar through PayPal.com (it is the only possible way to do such transactin) - it is my donation. I am so THANKFUL to you personally for being so patient and so thoughtful.

Anna from Oklahoma

Yes, I received your donation, Anna, and one from Mick. Thanks, guys.

By the way, I'll be on holiday next week and so won't be around to publish new comments. I'll be back on Friday and I'll try to catch up as soon as possible.

Just an update: I visited my ENT who confirmed my Labs diagnosis, said my left ear is really blocked and that it should clear up within a few weeks and never return. After reading all of your posts, I am a bit of a skeptic though. I did want to report that I have seen my chiropractor 2 times since my first vertigo episode and I have noticed a dramatic decrease in my dizziness as well as the "foggy" feeling in my head. I would recomend to anyone to at least get an opinion fromo a chiroprator, it really seems to be helping me. I went back to work yesterday and had very few dizzy episodes and hardly any today. Hopefully I am on my way to recovery!

Patricia,

5 Months is not abnormal.. Your amongst friends here... We all are going through this illness and rarely does it last 2 weeks... I have had this multiple times as well.. This last time my third as well been on for 2 years now... But although I do have goo dperiods lasting long times, I still get knocked back when I get a cold or such... Right now, just got over a cold from my daughter and I am not feeling so well for the past 3 days... I am actually miserable...

Sam

I wanted to let people know how my attempt with Lomatium Dissectum was. It seemed to help, but not to the level i thought it could. I started taking pure MSM. For me, the pure MSM (about 8 grams a day) made a huge difference. I am not dizzy taking it. I also have had for years problems with white tongue. Never knew what it was...Candida. Taking the MSM, half of my tongue has been cleared up. I also take some Greek Oregeno oil daily. Has made a huge difference for me.

Hello again. Happy hols,Rich. Well, the balance testing was a weird experience. Won't get any results till I get to see the ent chap again sometime. Firstly I had my eardrums vibrated by a little machine. Next we went into a darkened room and spent ages wearing goggles watching a little red dot of light moving in different ways. When the light stopped, the technician dropped the visa on the goggles to put me in darkness while I tried to stay focussed on where the spot had been. It was very odd. She asked questions to distract me, like count backwards from 60 in threes. Next we went onto the water in the ears job, which was very bizarre. Both time my right ear was tested my legs tingled ! Just when I thought nothing was happening, the room started to spin. It was really weird. All the time I'm wearing these goggles to monitor my eye movements, and I couldn't control what they were up to. Who invented this test ? Anyway, I know I reacted considerably less when having the left ear tested,presumably that shows some kind of imbalance. It took a while sitting around to let things settle before I tried to stand up, and then I got it wrong twice and had to sit down again. None of this was too unpleasant, but has left me feeling spaced out over the last couple of days. Hopefully this will settle soon, and let's hope it shows the docs something of use. Hope everyone is doing okay.

Hi Kim

Sounds like you are in the UK, as these are the standard tests they do in our ENT departments. I was a coward and wouldn't have the water in the ears test as I was in a real bad way with anxiety and everything else at the time and I just couldn't face it. There were two technicians with me at the time and one of them was quite put out which really annoyed me, I'd like to see her live through this illness! The other however was real nice and she said that whether I did or din't have that test wouldn't make any difference to my eventual treatment (VRT) whatsoever. Anyway, I didn't show anything abnormal with the other tests which I think can be a normal result as it is quite hard to detect abnormalities. The goggles test is quite hard to get through, I kept touching them because I wanted to rip them off, it felt so uncomfortable!

Take care.

Sandie

Hello Rich ,

Could you let mem know what brand of MSM you are taking, i would like to know where i could order it on the web.

Thanks,

Julie

Hello everyone, This question is for the gals sorry guys, Does anyone take birth control on a regular basis or had a change in type when or close to when any of their symptoms started? Maybe even getting off of birth control and then getting symptoms or changing of symptoms? Just a thought. I finally got my allergies under control with the herbs and I think the Vitamin B Pill form and green vegtable form along with the cut back of sugar and salt of course. Thanks ahead of time, Rhonda

Rhonda - "Maybe even getting off of birth control and then getting symptoms or changing of symptoms? Just a thought.". The thought is correct. Many ladies can relate to this including myself.

Sam - you said, that you were feeling miserable. Just hold on, man. It will get better if you continue to take CARE of your body.

Anna

Thank You Anna Now that being said,I do not remember the exact timing but I was put on birth control full time instead of 3 week month, I am wondering if this is half of my problem, I still think that there seems to be an intitial reaction causing the problem and then is prolonged by different contributing factors. I thought that when I got my allegies under control that would make the dizziness go away, but without the herbs at one point seemed to get worse before it got better. thanks again, Rhonda

Glad this forum is here- I am on my 7th week and after reading all the comments don't know whether to laugh or cry. Woke up completely deaf in my right ear along with my "dizzyness". I almost laugh when I call it "being dizzy"- I can not walk down the halls without using the wall to keep me walking straight. I can drive to the store (finally after 6 weeks) which is 1 mile away. I haven't noticed any lessening in the boat rocking...my body has gotten use to the feeling and now I don't throw up. I can guess by reading this forum that this will take time to get better but I am wondering...has anyone lost their hearing and if so, have they gotten it back? I am stone-cold deaf in my right ear from this virus and the silence is deafening! (Now I know where that saying came from!!) Thanks for all the comments and stories... Donna

Hello Anna I just discovered your entry on your new doctor discovery. That sounds wonderful. I cant wait to hear more good news. Rhonda

Hello Donna All your symptoms sound very similiar to mine but I did not have hearing loss. I do remember a doctor telling me that was a symptom of Menieres disease,but keep in mind this awful thing that we haveorhad seems to be different to everyone. I hope you continue to feel better. Sorry you have to put up with this crap. Rhonda

Donna - sorry for your deafness. At least your dizziness has diminished significantly (which is a good thing!). I know at least one person on this site (Lauren from WA). She became deaf on her right ear and she has been fighting with the condition.

Hello Donna Sorry to hear that you have to put up with this crap. I had very similiar symptoms except for the hearing loss. However I do remember one of my doctors telling me that temporary deafness was a symptom of Meineres disease. But remember that everyones symptoms seem to be slightly differnt. Hope this helps and that you start to feel better soon. Rhonda

Chad

did you ever have the dix hallpike test where they put goggles on you and lay you over a table and turn your head to see if you have nystagmus?

anyone have this test? i guess its a test for BPPV and the nystagmus is vertical.....i remember having this test and i did show some nystagmus but it was not vertical it was towards one side

does anyone know anything about this test?

hi everyone. I haven't posted for a little while. Its now been almost 12 weeks. Since my last post i've improved and got worse and improved and got worse!! Today has been quite bad and i am experiencing a very new sensation of something suddenly coming over me or it might be better to say through me. Its really hard to describe but it almost feels like a giant pulpitation followed by an emptiness. Its happened twice today and afterwards i am much more dizzy. This coupled with the chest pains which are anxiety are very concerning. Anyone experienced such a sensation?

Ladies- there is a post above about the pill. I'm not on the pill but i have noticed that my symptoms get a lot worse starting about a week before my period and during it. Does this happen to anyone else? Just as i was feeling better, no energy but most of the dizzyness had stopped, i got 10 times worse!!

And i was actually starting to think i was getting through thid thing!

pleased found this site aproxx 6 weeks ago playing football qiute a high level collasped and started vomiting world was spinning taken to hospital recoverd after several hours next 3 week no problems went jogging back to playing football then during the night 3 weeks ago woke up and same thing happened vomited for hours ended up lying in kitchen for hours recoverd little bit during the day over the next 5 days repeated episoeds horredous eventually went to hospital for a week and a half said i had labs never heard of it before improved in hospital been out a couple of days havnt been sick for several days no vertigo just dizziness seem to be getting better but anxiety really bad stopped playing football exercising going out take dog for short walks but frightend that i might collaspe today dizziness qiute bad but no vertigo or vomiting thank god wondering when i will get my life back also i suffer from bipolar disorder not very luck also my pet rabbit died today had him for years.

chris, the glasses you describe are called frenzel lenses. i have had the dix-hallpike done with the lenses on. the nystagmus for bppv is torsional with an upbeat or downbeat depending on the canal involved-posterior or anterior. a strictly vertical nystagmus indicates a central lesion and not peripheral.

to the last poster: sorry about your rabbit.

megan

been reading posts part of me wishes i havnt but from what ive read most people do recover just seems reading these posts that most people dont i am assuming most people on here worst as scenrios anyway been over two weeks since my last big attack suffered for last three weeks although had one of attack 6 weeks ago doc confirmed labs been feeling not bad still worring if i might have another attack going for short walks seems people on here having major problems non stop i up till now am not probaly will after saying that so hopefully not to long till i get my life back.

June,

Most recover.... But like me... When I start to feel better and over the last 2 years with this battle I have had periods of feeling good... Months etc... But what you will find... And I am guilty of this as well, is that when I feel better, Id ont run backto the board to post that I am doing great.. And the reason for this (atleast for me) is that I dont want to jinx it as well as I just want to go out and forget about it....

But You will see people just disappear after a while... That is a recovery ofits own.

had 3 or 4 verigo attacks over the course of a week felt bit better during the day then ended up in hospital thought i was dying.in hospital for ten days never been in hospital before in hospital had no more vertigo attacks or vomiting just dizziness little of balance now 1 week after getting out starting to feel much better no verigo or vomiting still bit dizzy not bad left hear not sure if i lost any hearing but had tinnitis thats now reducing started taking dog for walks,only problem still panicky just in case it happens again hopefully things keep going the way there are get back to playing soccer.

I just want to say that I am really doing well and I truly think that it is the result of going to the chiropractor, I have not had any dizziness or head pain for a few days, nor have I taken any medication. I would strongly suggest to anyone who had the experience (which I posted about above), to see a chiropractor. Find a good one, I live on the Westside of Cleveland, so if any of you fellow suffers also do, I can let you know my Dr.'s name. Good Luck to all of you and I hope you will sometime feel the relief that I have. I just pray that my labs will not return.

I too am a sufferer, and wandering whether anyone else feels that caffiene and sugar can make the dizzyness worse?

gaz question to everyone before i came to this site feeling not to bad been reading these horror stories now feeling little dizzy but must remember most people do make a full recovery

Hi Everyone,

I haven't written in a while, but am glad, I got some feedback from Sam. Thank you for that!

I would love to hear from anyone who's tried to be on an airplane - long flight while having Labyrinthitis. Could anyone help me? I am still hopefull of flying from Europe to the US in August, but would really appreciate to hear from anyone who's had experience with that.

I have good days, and bad days. This weekend I went on a trip 1 hour away from home (first time since it all started 6 months ago!). It went well, but I was very anxious, so I think it helps if we, that suffer from this condition learned to relax. I know it is easy to say that, but I think stress has a lot to do with it. Patricia

Hi, everybody dizzy folks.

Good news - Alicia Molic Australian tennis pro just won French Open in doubles! It happened after her returning to professional tennis from a long (more than a year) DIZZY bout. Do not ask me HOW she managed to do such a thing - I have no idea. But the fact is - she is back on trail.

Bethan Jones - Both sugar and caffeine can cause dizziness and headaches. Everybody is DIFFERENT, though.

Hold on. Eat right and take care of yourself.

Anna from OK (35 years with IT)

Hi Patricia, regarding your question about long flights, I have flown from UK to Vancouver twice while having this problem. Wasn't at all sure how things would go, but really wanted to see Canada, and it was so worth it. I can't say the flights caused any significant problem. One journey had pretty bad turbulence which I found quite amusing as it put everyone else in a similar position to me. Yes, I got a bit of jet lag, but possibly less than other family members, I'm used to feeling spacey and tired anyway ! Similarly I enjoyed a ferry crossing because other people were tripping up,not just me. There have been stories of folk having trouble on or after flights, but it isn't a given. If you really want to go, and it sounds like you do, I would say start positive thinking and take a leap of faith. Good luck.

Hello Abs: Yes I feel crummier durring that time of month, but I was wondering if it was from the hormonal headaches or is it because of the the extra junk food that I take in durring this time. I have not been taking birth control pills for three weeks now and between that and the herbs and vitamin b6 and niacin,(really helps keep the ears open.)started with 250mg 3times for 2 bottles worth over 90 days. but saw an even bigger improvement around the 3rd week of no birth control. Of course I initally felt like crap for the 2nd week after my body discoverd it was not going to get birth control. But for me I am hoping this will continue to keep the motion sickness away. Hope this helps Rhonda

Hi all, my name is Mike and I am a physical therapy student studying on vestibular rehabilitation and came across this board researching on the topic of Labryinthitis. I was wondering has anyone on this board used the Balance Master machine during their treatment with their health care professional. If so, please write back and tell me what type of exercises you were doing on this machine. Thanks for your help.

Mike from NYC

Patricia - regarding long flights. I traveled a lot by air including trans-atlantic and trans- pacific flights. Just try several things - Keep your nose clear by using nose decongestant Drink a lot of fluids being in the cabin (the air in the cabin is very dry) Swallow while taking off and landing Rest whenever you can (allow extra-time after the arrival) Take over-the counter anti-seackness drugs - like dramamine (they will relax your vestibular reflaxes and they will do no harm) Kim is right - THINK POSITIVELY! You can do this!

Anna from OK (35 years with IT)

gaz yesterday was my 4th week since my first attack got better graduly today went for 1 mile slow jog before all this i was iam a semi pro footballer little dizzy still but am fine

what does it mean when you have side to side (horizontal) nystagmus with the goggles on?

is that a sign of VN?

Hello Mike, I used the Balence Master Machine durring treatment it was at the Los Osos Physical Therapy Center, CA. They concentrated on the forward and backward tilting, the one that worked the best for me was sitting on a balence ball with the forward and backward tilting. The first time I tried that one I lasted literally 2 seconds if that. I have also heard there is an excellant physical therapy in templeton CA but I dont know the name of that one. With the Balence machine I also used the floor exercises, balence board side to side and forward, along with walking in a straight line with eyes closed, and on the foam balance beam. hope this helps.Rhonda

Hello Anna I have been off of birth control for 3 weeks now, and have no symptoms of labs. I felt crummy for the first week and after that that floaty crummy feeling along with the upset stomache 24/7 have completely gone away. So for me the causes seem to have been allergies,neck allignment, and birth control. Which maybe is why my symptoms kept changing. But of course this is all a hypethetical guess. Rhonda I am still working on lowering sugar intake/salt and no caffine.

A leap of faith! Yes, that's what I call what you did Kim, and what I am going to do in the end of July! I've reserved tickets to the States; even though this is a pretty bad week for me - as far as Labyrinthitis is concerned - I've been pretty rocky these days, thanks to a minor sinus infection... I am happy though, that I have you guys. Anna, thank you ever so much for the different tips - I'll try all of them, except for the anti-sickness medicine - they kind’ a knock me out! Anna and Kim, did you guys feel dizzier after the plane landed? I always feel a little dizzy (when I don't have labyrinthitis) during the 15 minutes before landing - when the plane is descending. I have to say, I think you're both courageous to fly with this condition. I'm gonna do it - putting my faith in God!

Hello I forgot to mention that I am still taking vitamin B and niacin Meagan, this really helps with the plugged up feeling my acupunturist, doctor also gave a me an herb specific for that painful swelling and burning, that still seems to be from allergies. The niacin I still take 250 mg. once at night and 100 mg in the morning, started with niacin 250 3 times a day for a bottles worth. Hope this helps

hi feel sorry for everybody on here 5 weeks ago had my first attack. 1 week of hell then about 3 weeks symtoms improved this last week 100 per cent hearing back to normal tinnitis ive neve had before this now gone. dizziness gone i am fine.i think coming to this site for some would not be helpful but again most people do recover within several weeks people on hee are just very unlucky.anyway hope everyone gets better.

horizontal nystagmus may be caused by cupulolithiasis of the horizontal canal. it is a form of bppv but instead of debris or otoliths floating around in the semicircular canal, they are adhered to the cupula. whether it was caused by vn, who knows. it is important that you are seen by a trained therapist (one who specializes in vestibular disorders) and who is trained in the maneuvers to remove the debris from the cupula if this is your case.

Ive been dizzy and lightheaded for six months now and even though its cool to find people with simaler stories it was also very depressing to not read more recovery stories.My ent tells me im getting better that he can tell just by the way i talk to him but sometimes i just feel like im getting more used to it if thats possable.I had tubes put in my ears but they seemed to make my vertigo worse they did find fluid in my left ear though even after 2other ents told me there was none and even an mri showed nothing the tubes made me lose alot of hearing so after the fluid dried up i had the doc take them out . I thought this would be the end of it but its now been a month and a half and im still dizzy although my hearing has come back. ive had tons of those pannic attacks in the beginning but i dont pannic so much anymore i just get very angry and whats werse is my ent even though i like him alot really has no solid answers for me . ive had to piece most of this together myself and feel very alone and afraid .if anyone has anymore to post about recovering from this monsterous crap pleas do it would give me some hope...... also ive had a yawning disorder of some sort some times i yawn 40 times in arow 2 or 3times aday even when im not tierd . the doc says it doesnt meen anything but it only started when every thing els started does this happen to any one els.Im sure ill be posting alot so thanx 4 anyone who can comment

Really good site, and a pleasant suprise... Good Luck!!! What do you think about my sites?

Hey all, this is my first post, but i have been reading this website on and off for a few months now. like everyone, i'm relieved to come across others who share the abosolute frustration of inner ear problems. i've never been so frustrated in my life, some days it seems unbearable. absolute hell, there's no other word. Just quickly, i was diagnosed with BPPV back in Feb 07, having had recurrent dizziness ear fullness, etc. fatigue since last November. neck pain, ear pain, jaw pain..and then gradually, anxiety of course, as you get scared doing the most normal things. It's been a constant, pretty much 24/7 dizziness and i've been on and off work since last November. To cut to the chase, after having seen so many different doctors and feeling like i was getting nowhere and that everyone thought i was just going mad, i went and saw a gp/naturopath, a chinese doctor who specialises in nutrition but who is also a qualified General Prac. He straight away put me on a diet to benefit general inner-ear health, which means low-sugar, low-sodium, low-carb (for tinnitus), low-fat, and NO CORN (weirdly enough)...pretty boring, yes. but honestly within 4 days i felt better. Not 100 percent, but a hell of a lot better. time went on. he also prescribed vitamins, incl magnesium and zinc supplements. I saw a huge improvement, but still got the fullness/ear pain etc. In the meantime, he ordered food allergy tests, aswell as other things and we discovered i'm highly sensitive to DAIRY, also yeast, wheat, soy, eggs...and a few other things. This was 2 weeks ago. i've since cut out all yeast products (it's a big ask, but worth it), all milk products, and everything else on the list...and i feel SO MUCH BETTER. I can tell you, it's difficult- i love food, so much. No more cheeses, wine, coffee...but hey, what's more important than actually feeling like a person again. I've never felt so helpless in all of my life, until i took it upon myself to keep persisting and figure this out. This is early days, granted. But so far it's working far better than anything else i've tried. I was prescribed serc tablets which did nothing, stemetil, 'it'll just get better with time...' they all said. Well it didn't. maybe for a few hours, or a day, but that's not good enough. Persist!! out diet is such a huge part of our well being. This whole mess has changed my entire outlook on life. I think a lot of you would agree. I think the important thing to remember is you're NOT CRAZY and this will get BETTER>

and also, i never dreamed i was allergic/sensitive to anything in my life. i've always eaten everything, drank anything. but our bodies change. we just need to change with them.

i hope this helps. you've all helped me so much, unspeakably so.

but i feel so far away from you all down here in Australia!!

thanks again guys, and i'll keep you posted with my progress if it's of any help,

ciao

Rosie

Whoever is posting, please sign a name associated with your post. Either in the Name field or at the end of your post. This is not difficult.

Hello everyone,

I am back again undergoing a cazy Blip. have no idea when this thing will end it is driving me nuts. I had another cold 3 weeks ago and have ben dizzy again ever since. It really is terrible... I cannot believe how sensitive I am to these things.

Sam

Hi there everyone:) I read most of the posts from page 1-3 after stumbling on this fantastic site. I didn't have enough time to read all the rest of the pages so I may ask questions that may have already been answered for other people. Mind you, I also write alot when I want to get to the bottom of things. Here is my story:

Last year, on July I went to an awesome beach party in wasaga and stayed in the water for about 4 hours at a time, more than once too. I also love swimming with my head under water. After that day a few weeks later I developed a cold but never thought anything of it...BIG mistake. That untreated/ignored cold persisted and after it lasted for a month I went to my family Dr. about it and he said I had a sinus infection and sent me home with a sinus antibiotic...which NEVER worked and NEVER decreased my infection. I went back to him and each time he sent me home with a new/stronger antibiotic and yet nothing helped. At this point all that bugged me was that I was coughing a lot and had a stuffy/runny nose. Well in November I remember help preparing food for a wedding and I was not feeling 100%...I was just exhausted from my sinus infection and just very irritable. That same night my boyfriend of 3 years proposed to me and I happily agreed to marry him and then the next day I was a total bitch...I was soo sad that I forgot details of that night and that it went too fast. I have an awesome memory so this really peeved me off. All of a sudden I started panicking and crying and then apologizing to him. I could not understand what on earth was wrong with me!! Well, come December (Christmas day even) is when my whole world came crashing down on me!! The night before I remember my fiancee asking me if I wanted to go out and see a movie...my favorite thing to do...I remember feeling "fogged up" that night but I just ignored it and went to the movies even though I wasn't in the mood...strangely. THIS WAS MY FIRST BRAIN FOG INCIDENT!! IT JUST HIT ME WITH NO WARNING!!To this day I still can't remember that movie. Well on Christmas Dinner/Day I was playing a card game with my fiancee and all of a sudden I asked myself why I wasn't having any fun and feeling like I used to when I played that game with him. I told myself that it was all because I didn't give him a proper "Hi" ie french-kiss and hug so I asked him if we could go somewhere and say hi. We kissed and hugged and I remember not feeling satisfied and very scared as to why I was feeling different. (I NOW know this was my "Brain Fog" starting up). Come supper time, I asked myself if maybeI was falling out of love with Nick and started panicking about that (my heart pounded, I started to sweat profusely, the room started spinning) idea because that would never have entered my mind before. I started crying uncontrollably and he walked me upstairs where I tried to take a break from him but then I closed my eyes, tried to focus on what I weas feeling and then said I was acting stupid and was just too dizzy to think straight. Was I dizzy?? Ever since that HORRIBLE night things have gotten worse for a bit....my "Brain Fog" stayed with me ever since that night and NEVER and I mean NEVER left me alone for a whole day!!!! This is what I was feeling exactly and what I am feeling presently today: "It's as if someone drugged me with 2 sleeping pills, gave me my old glasses to wear and locked me in a giant bubble." Does that describe "Brain Fog"? I am terrified that what I am experiencing isn't "Brain Fog" but maybe something else. I also think being "Spaced out" is the same thing. Is this right. Well anyways, through this torturous ordeal I experienced EXTREME fatigue anxiety, suicidal thoughts, depression (and I used to be sooo happy) and mood swings like NO ONE's business!! I attempted to take a break from my fiancee just so that I could go to sleep and go back to my house on weekends. It has been 8 months since I have asked him to take a break and on good "emotional" days thanks to my prozac I feel stupid for even considering something so ridiculous!! My "Brain Fog" is the ONE thing I was gone JUST FOR ONE DAY ANYWAYS!! It's with me 24/7 and the only things that make it worse is dampy, muggy weather, having a bad "depressed day", my time of the month, having the flu or the cold and STRESS about being SICK and not knowing what is going on!!! There has been 3 times when I was in church and I focused realllly hard on trying to see properly and for a brief second I was CURED..then not. I got my eyes checked and everything came back fine as well as a Cat Scan, MRI, EEG, thyroid blood test, blood pressure blood test etc. and everything came back fine except the Cat Scan and I quote, "The results show some sign of a minor sinus infection". Ok so something was wrong yet then...good to hear. My ear/nose/throat specialist who I went to 2 times said that every time he looked in my ears he saw they were red and pulled...especially my left one but that he had no clue why I would be so "fogged up." I have never experienced constant room spinning though the other day at an accident on the 400 I fely dehydtated and felt like I was going to pass out, was irritable and my brain fog got much worse as did my vision. I am wondering if this was a panick attack. I also start panicking in malls when I feel crowded and claustophobic. Lately I am experiencing pretty much everything still that started 8 months ago except my anxiety is getting better...I have more control over it. My ears feel clogged up 24/7 for 8 months and when I swallow I hear a sound like mucus being pushed or being popped. In the beginning my head felt sooo heavy but that eventually went away. I am sooo angry at Dr.'s not taking me/US seriously so that WE have to figure it out for ourselves!!! I researched something called "Candida" and was positive based on the symptoms that I had it but when I did a specified spit test it came back negative which showed I didn't have Candida. How does one know if they have Labs for SURE??? How does one get diagnosed? What works to get rid of the brain fog even just temporarily...what cures this awful awful thing??? There is the same beach party this weekend and I want to go soo badly but how do I avoid making things worse?? Please, any help will be muuuuuch appreciated. My email is msheatherallen@hotmail.com as is my msn address. Thank-you soo much for listening!!

Heather

Sorry! I forgot to add a few things:

1. I have to take a sip of red wine at my church when we celebrate "Lord's Supper" once every 3 months...will this really effect me?

2. My vision seems awful too and is getting worse lately.

3. I bearly ever excersized before all this but my fiancee suggested I do some laps around my house every day so I do but now I am wondering if this is safe for my ears and/or my symptoms?

4. My ears hurt occassionally too and when they do it really hurts! When I was a kid I would get really sick when I had an ear infection. Wonder if this accounts for anything...?

5. I haven't thrown up in years so that may be why I don't have it as bad as other people on here.

6. Does anyone else here have 24/7 BRAIN FOG AND IT NEVER GOES AWAY?

Thanks:D

Heather

Heather,

1)One sip of wine wont affect you 2)Is it your actual vision or just the feeling that it is getting worse. Like you cnt focus because it makes your feel weird... For me, I get that, but my actual vision is not getting worse. 3)Yes, do some light excercise. Overall it will help you 4)Middle ear infections and inner ear infections really do not relate. Pain could be due to a bunch of things... Retracted Ear drum?? Negative pressure... etc. can cause pain 5) Everyone is different... All symptoms overlap but the way everyone may experience is different. 6)Depending on what it actually means.. I have felt 'Funny', heavy head, pressure etc.. dizziness, lightheaded... And it does sometimes get hard to think with all this....

Still dealing with this BLIP.

Sam

Hi everyone.

This is my first post but I have been reading your posts for a few months now.

I have been having crazy symptoms since March. My doc thinks it is labs, but I have not been officially diagnosed yet.

Basically, the first sign that something was wrong with me started when I was in a work meeting, and the hearing in my left ear momentarily cut in and out for about an hour. I had been feeling quite off colour during the day but had not thought much about it until I lost my hearing in my left ear. It was completely freaky and I went to see the doctor the next day.

I then had episodes of distorted hearing (especially low sounds) for about half an hour each for a few weeks. When I went to a busy place (such as a restaurant) I also found it very hard to hear. It is almost that I couldn't concentrate on a single noise at a time.

Since then, I haven't had so many hearing problems, but have had incidents of dizziness and just a general feeling of constantly being off colour. Some days i wake up extremely tired (like I have been hit over the head) and i have had bouts of ear pain and weird palpitations over my body. For example, sometimes I get a pulsing pain in my fingers or toes. I also find it really hard to focus my eyes sometimes. I have good days and bad days and so far haven't had to take time off work for it. But i have not felt like doing normal things (such as going out) and it gets me down sometimes.

Also little things, like the lights at the supermarket, make me very dizzy.

Does anyone else have all these symptoms?

Rosie - I enjoyed reading your post. I am also from Australia. I would be interested on finding out where your gp/naturopath is (is he in WA by any chance?)

While it is depressing to see so many people who are not well, it is good to know there are others out there who are going through the same thing.

Hi Heather,

I read your story - about the "brain fog". That happens to me a lot, when I am stressed, have not slept enough, basically, when I think too much about all the things I want to acomplish in a day - and knowing, that I am somewaht limited to doing so, beacause og Lab. Last week, I started the day feeling sleepy, even though I had just had 8 hrs. sleep, and feeling foggy. I pulled myself together (I am a single mom, and I live in a foreign country, have no family here to help me - everyone is back in the States, and all my friends live too far away, or are too busy working or taking care of their kids), because basically I had no other option. My daughter had a stomach bug, and I was really really dizzy + feeling foggy, ears full, etc. I told myself that I HAD TO GO ON, went to the supermarket, did my chores, etc, prayed - for what I read from you, you too go to church, so I think and KNOW, that it helps to pray. God DOES listen, and helps us go on. Just hand in there, tell yourself that you're not alone, there's a God watching over all of us with this terrible condition, and He will help us get through this. Take care, and I will try to contact you via MSN. Pat

hey Trey and everyone, i've definitely experienced those ear symptoms you mentioned, where suddenly there's a ringing in one ear and everything becomes very muffled for about 30 seconds. A friend of mine has similar experiences, and also had difficulty with her ears as a child, as did I. however, she hasn't recurrent inner ear problems.

perhaps it's an ear infection, and it will just pass with a bit more time (famous last words i know!). hopefully this will be the case! but definitely go and get it checked out again if it continues, if there's one thing i've learnt it's to persevere until someone's willing to take it on with you. As for my wonderful gp/naturopath, unfortunately he's in melbourne so it's probably not feasible for you to go to him, unless you feel like a holiday :) however my recommendation is to look for someone with those qualifications in WA, as they will take a more holistic look at what's going on, and if necessary recommend vitamin supplements, or dietary changes. I don't know where i would be now if it wasn't for the recommendation i got. the dizziness is a scary thing but be positive that you can do something about it! and who knows, it could go away in a few weeks. as for the supermarket lights, say no more! but then again, i find them difficult at the best of times. have never liked fluorescents :) keep me posted, and take care Rosie

Has anyone heard of Oil-pulling and if it can help all or any of this? I am starting tomorrow and will update everyone.

Hi there,

I have had labrynthitis for the last three and a half months..........and I have tried many remedies mainly holistic, such as large doses of vitamin C, echinacea, gingko biloba, homeopathy, bush flower remedies (fushcia, spinifex), and I have used accupressure, qigong, hopi ear candles, drinking lots of water, enemas, castor oil packs and even drank my own urine. The thing is I tend to jump around after a course of treatment and move on to the next. Maybe I should stick to a few things and see them through, but I just assume things arent working if I dont get any results. My symptoms are:- pressure in my head, dizziness, nausea, lack of appetite, fatigue, anxiety, a stiff neck, disorientation, spaced out feelings, thick-headed, and I get affected by head movement, eye movement and external things moving. I have had this for most of the time but over the last six weeks I have had some days that I am completely symptom free and I cant work out why. But much to my sadness the labrynthitis is still here, and I just get on with work and life and looking after my kid. I cant chill out and go to bed.

I was reading a bit about the affects of anxiety on the illness, and I must admit I have had my fair share of it. I split up with my long-term partner and have had some very dramatic relationships with several people that have caused me tremendous stress. I also read somewhere about the benefits of sacro-cranial therapy/osteopathy and chiropractic practise. I will try one of these when I get some money together. What are these VRT exercises that people have talked about in the past? I have read through many of your stories and I got upset reading about sufferers who have had it for years. It kinda takes you out of your self reading about others suffering! Maybe I gotta learn something deep and internal about myself. You cant get any deeper 'in' than your inner ear can you?

I am gonna try some stuff suggestted like the grapeseed extract, steam inhaler, and try to cut out my chocolate addiction. I came across a site on chinese health which postualted the use of goldenseal and plantago as serious anti-bacterial remedies. Has anyone used them at all? I wonder if that is why the grapeseed extract works?

I hope that you are all moving forward and ridding your body of this debilitiating illness, which surely on one level is a great teacher.

Foxy

Have had a busy week so far. Monday I saw a balance rehabilitation chap for assessment. He said my test results showed a marked loss of balance function in the left inner ear. Finally something in black and white ! I said I'd begun to think I was imagining things, and he said no way. He explained a lot of things that I've already learned from reading sites, like the fact you will get very tired, lose concentration and become forgetful, because the brain is working overtime making sense of messages that the balance centre would normally control. He gave me some very simple exercises to do twice a day, and warned that I may find an increase in symptoms before seeing any benefit. I've done as instructed the last couple of days, and yes indeed, I'm bumping into things and tripping over. Even watching tv was a bit weird. Still, this must mean it's having some effect and I'll stick with it. Today I had to see an eye specialist as I've been having some vision problems. After a quick exam, she told me I was developing cateracts - at the age of 47 ! It's likely I'll need an op in the not too distant future. I explained I am very sensitive about seeing properly because of the balance issues. Funnily enough, I wasn't really upset because it was so novel getting a fast diagnosis of something that can be fixed with a simple operation. Makes a flipping change ! Hope everyone is okay out there.

I think I have an inner ear infection, but I am still being tested...do these symptoms seem to follow what you have experienced?? - ear popping, ear pain, ear pressure, clear fluid in ears, at times ringing in ears - sinus pain, sinus pressure - headaches - nausea - feels like walking on marshmallows - "off" feeling and at the beginning...felt like the room was moving - hard to concentrate - dentist numb feeling in lower half of the face - weak limbs -- the symptoms come and go and light/noise/motion trigger them to be worse!

I have an appointment with a neurologist coming up and I am going to try reflexology and accupuncture. I have had these symptoms on and off since April. I had a CT scan and it came back clear!

Let me know your thoughts...if you can relate...etc.

Thanks!

Foxy,

Good days = good sign... Sign of recovery, however recorvery is not linear and will bounc e up and down.. You may wake up one day and have a pretty good day and the next can be completely horrible. I dont know what happens, but when you go to sleep, all bets are off!!!

It should gradually improve over time where you get longer and longer periods of feeling better... dont be upset when you regress... Some say its like 2 steps forward, 1 step back.... I know its hard.... Oh how I know!

Hi, everyone

Just an update from Anna, OK (35 years with IT on and off). I have been doing progressively better with food-allergy shots (immunization shots). They were prescribed by an immunology-allergology doctor (IT IS KIND OF NON-TRADITIONAL MEDICINE). I was ready to die from dizziness, sound sensitivity, headaches, hot flashes. panic attacks etc.etc. only six months ago. Everybody including myself were tired of my awful, horrible ailment. I was a miserable, miserable 50-something year-old women.

I will say more in a couple of weeks when my immunization shots trial is over.

Keep strong, do not lose HOPE!

Lauren from WA -THANKS, THANKS and THANKS - you recommended me this doctor.

Anna, OK

Kim, any chance of you letting us in on the exercises you have been given?

You talk about bumping into things, I have been doing that on and off for 2 years now, resulting in two broken toes (at different times!).

Glad you have had some kind of diagnosis. My doctor wants me referred back to the ENT but I have refused, I can't see the point.

Sandie

Thanks Sam, for your comments.

How are your symptoms now? Do you do any of the VRT exercises? What is your regime for healing?

I started the plantago/goldenseal/grapefruit seed extract yesterday,...........god they are so powerful and smell so green. I have cut out all the sugar, and will smoke one last cigarette tonight cos the heat does make me feel some kind of release, or maybe it is just the sense of relaxation that I like. I only have the odd few here and there but I am gonna get back to some exercise and some osteopathic stretching to put in its place!

It is great to hear that clear days are a good sign, lately I have just felt spaced out and dizzy everyday and forgetful of those few days of clarity where my brain feels like there is a clear spring of water rushing through it. I want that back.

I am supposed to see a specialist at the end of the month but I am gonna nurture myself a lot and try to get well by then. Maybe it is good to get other medical views, cos my doctor just didnt seem to care at all, cos I am still doing everything I do, she said well 'it is not stopping you is it?' Yet it is only cos I have no choice, or have any childcare. I am glad that as an exercise teacher of martial arts, qi gong, boxing and so on that I have this awareness of my body and can hold it together,and re-balance myself but I do feel worn out after all this time, nearly four months. How do you cope emotionally with it all Sam?

I hope that everyone is keeping strong and healing fast and learning from it all.

Best wishes, Foxy

Hey there, Sandie, I wasn't trying to keep my vrt's a secret, they will be nothing new to anyone. Initially I do one type. 1 Hold your thumb out at arms length, focus on one point of it,move your head smoothly from side to side. 2 Thumb at arms length, focus on it while moving head smoothly up and down. 3 Thumb at arms length, focus on it, move thumb smoothly side to side while moving head side to side in opposite direction to thumb. 4 Thumb at arms length, focus on it, move thumb smoothly up and down while moving head up and down in opposite direction to thumb. Two minutes for each of above, twice a day. Begin by doing this slowly against a plain background, progress to more quickly and against a detailed background. Very important to be consistent keeping it up. I was expecting to be given more but was advised to start with these. Hadn't tried any myself previously as I wanted "official" guidance first. They seem to be doing something, taxing my brain a bit, so possibly doing more than this at present would be overload. The balance assessor asked if I had any questions, so I said how come it's taken so long to get any diagnosis. He was loyal to his profession and said balance and dizziness issues are notoriously hard to pin down. Am very glad I can finally explain to other people what the problem is. I had to have a talk with my boss, as I spaced out big time at work the other day. (I'm a ward clerk in a neurosurgical high dependency unit.) I explained what I'd been told, and said I promised her I was never drunk or under the influence while at work, as I did wonder if anyone thought that. She didn't say anything, just looked at me. Ouch. Frankly I can't afford to care, my conscience is clear ! Does anyone else have trouble speaking at times ? If I get giddy I can't always get my words out and sometimes stutter a bit, which I never did previously. During the caloric testing this happened when it brought on dizziness, so I guess there is a link. Yet another thing I forgot to ask about at clinic.

I first became ill at the end of march so i have had labs for a while now. I'm writing here because i'm on the road to recovery ( i think). Its been tough and only yesterday I was in bed all day with a headache, tiredness and dizzyness. So it up and down. My main problem once the balance thing was ok i was left with headaches, a spaced out feeling, eye strain (terrible). all these added up to a really bad time for me. I'm not sure if I will ever feel 'normal' but don't worry it does get ever so slighly better even if you don't really notice it at first. For all those people struggling out there keep going and stay positive! This is so important. This is something i really didn't do for at least 2 months. But once i started thinking in a more positive way things began to turn for me (only a tiny bit at a time).

Take care

karen

I visit this site from time to time since I am one of the unlucky people who are prone to Labs. So far I've gotten in twice in a one year time span. Hasn't happened since February but I wake up with joy every day that it isn't there! I did the exercises, took the vitamins and worked out like a mad woman and finally it dissipated and I am 100% right now. Cross your fingers for me, please! I sympathize with all of you on this forum and hope you all get well quickly.

The real reason I am writing is to inform you of an article I just read in New Scientist magazine. Apparently there is a doctor who is working on an implantable device to stop dizziness from injured inner ear patients. His name is Andrei Shkel and him and his colleagues at University of California in Irving are working on the problem. I'm so happy to see that someone has taken this seriously!!! So many doctors shrug this illness off saying, "It's just a virus" or "It's just vertigo." I thought I would let everyone know about this. Of course, this is probably not even in clinical trials yet but maybe, soon, they will have a permanent cure!!!!!!!!!

Ravynn - thanks for mentioning Prof. Andrei Shkel. I am reading the following webpage about his device right now.

http://www.nsti.org/Nanotech2007/showbio.html?id=37

I take seriousely EVERYTHING new in the area of balance disorders.

Hugs,

Anna from OK (35 years with balance disorder)

Foxy,

Healing regiments are funny... I dont know what actually works... I was undergoing vestibular therapy for a while... I dont know if it helped or not.. But in actuality.. 2 days after i stopped my VRT, (i dont know if it was just coincidence) but I felt alot better and from there on I started progressing. I did try magnesium, l-lysine, ginkgo, etc.... etc... I dont know if I gave anythign enough time though... You can never tell with this thing.

right now, I dont do much aside from wait it out... I try to keep up my normal routine, and not lay down too much, however I do try to take some rest here and there, like 1 day a week -- Sat or Sun, I like to just veg and not have anything too stressful to do.

You ask me how I cope, and my answer is if coping is falling apart every now and then and putting up a good front, thenI am doing quite well.... I actually have had this for 2 years now.... But the past year I would say has been 60% feeling normal, but always get setbacks due to illness (colds). I do take an anti-depressant to help with my anxiety.. It was all I could do as I was at wits end.

The rpessure can be exhausting... I sit at a desk all day and am expected to give insight.. But i find it hard to think when this thing acts up.... You will get through it.. Its like a light switch I think... When it clicks, it just does and you know its getting better...

Sam

Sam's post as of July 9 is excellent. I can relate. I felt absolutely horrible after VRT exercises. I cope with anti-depressants, support of my family (I do not cover up how I feel) and try hard to think positive. I still do NOT lose my hope to get BETTER .... some day in future

Anna - very long-term sufferer from OK

Hi everyone !!!! I started this adventure as post number 17 on page 8. That will let you in on my story. First let me take time to thank anna , maggie , sam , patricia , kim , heather , megan and all the rest of you , who day after day post and stay active on this web site. Thank You..

All of us out here thank you for a place to turn.

Well guess you know what brought me back ??? I just like to write down what I go through just so anyone else who wonders...well yes someone else goes through it to.. I had the vertigo for 2.5 weeks. along with dizzyness. Then one day poof.. I was back to say 97%..BUT and it is always a big BUT in our case.. I have always had that head buzz or off feeling. Trust me :) I hate it... I also seemed to remain very fatigued.. I had a hard way to go at the gym for a long time..and I still do...I call it floorecent lighting because phew it floors me.. I have to focus and refocus my eyes when I am under those damn lights.. and there everywhere ! So there are my little hang ups.. So yes I guess it hung around for me..

So 2 days ago after feeling not to bad for quite sometime (meaning even the symptoms I just listed were diminishing) I awoke to the pleasent old friend of mine.. I was sick to my stomach and dizzy. Albeit horrible, I was lucky enough not to have vertigo attacks this time..I have improoved over the last 2 days.

I thought I would take this time to write this down.. This is to be a positive for all those out there and mainly the newbies and silent majority. I belive that it does get better over time.. I hope this is my virus making its last stand.. My reaction being the quick recovery is my immune system doing its job. Let hope !!!!!

Now I want you all to remember that I said I was a gym rat..I had three months of not to hot workouts. Which brings me to my old friends...the gear...steroids.. I have not used them for years..I will be trying them again soon. I hope this will be the super juice I need to once and for all rid myself of this. I know what some of you are thinking..But wait a second. Think about it...steroids super charge your body (in simple terms). When you take them all of your aches & pains go away ... you heal .... you never get sick..I have been there. Imagine this viral infection getting a super kick in the but !! This may seem radical to some but, alot of you are taking steroids prescribed by your doc. Guess what you get !! The week or mild steroids.. What I will be taking are anabolic. the big guns.. I thought I would put this out there to get some thought going in your heads.

As a warning though you must remember. I have been lifting now for 18 years. I have studied health and nutrition along with roids for just as long. I have been to my doctor and he knows what I am doing. I have just had my blood taken and will monitor it..I will keep all of you informed of my adventure back to my old ways in hopes of curing my present ills..and maybe getting a little size on :)

Thank you for listening, and dont think I am crazy. Be glad that you have one person to go to the extreme end of medicine to find the awnser.

DAVID,

I just want you to understand that ANABLOIC steroids and Corticosteroids are completely different!!!!!

The ones you take for your muscle growth are hormones that stimulate skeletal muscle growth. The drugs your doctor gives you are in a class called corticosteroids and are not the same. They actually retard inflammation in your system. If Anabolic steroids were the same, you would balloon up and have a whole host of health problems due to them. Tread lightly.......

Also, remember Anabolic steroids shrink your testes, and they also have been linked to cancer... I know your young and looking good is what you want NOW, but dont do something you will regret...

I too am an avid gym goer, however, I have never taken the stuff and do not plan to. You can achieve a good result without them, it just takes work

Sam

Anna,

Thanks for the props..... I love how you keep positive and I am happy that you have gotten better slowly.... I cannot wait for teh day when you wake up and this thing is gone from your life!

I come on this board whenever Igo through a blip.. In truth, I do not like reading the posts because it makes me remember the worst of it.

This illness is hell on wheels!!!! One day doctors will realize it.

I was treated by a doctor who 3 months after he saw me, came down with it... He said it was the most miserable time in his life!

David -

You can't possibly live in the US, do you? The headlines here just recently about the wrestler taking steroids - he killed his wife and young son in a fit of rage. Then come to find about steroid usage being so big in the wrestling world, and the number of deaths due to them.

Don't get me wrong, please, to each his own, but I just worry that some may read your post and think that steroids are the way to go. I'm sorry but they are not, they are an extremely dangerous thing to screw around with. Get healthy, work out, YES!!! But, do it without drugs. A healthy body is healthy because you take care of it, not by dumping steroids into it. I also worry because you say your Doctor is aware of it - thats a scary thought too.

Please don't get me wrong, I just disagree with you. So many people read this board, and they are sick, lost, and very vulnerable. I would hate to see anyone turn to steroid use thinking it might be the way to go.

Hi, let me start from the beginning. I am 27 years old physically active and healthy until I woke up sometime late in the month of May to a room that was spinning dramatically,worse on every head movement , my heart was racing , I felt sick and was sick about fifteen minutes after I woke up. I had a job standing , walking , sitting I felt totally off balance. An hour later it settled from being violent spinning to inbalance , surreal feeling. I have not vomited or felt sick since that first episode it is now 7 weeks today since that first episode yet I still feel lightheaded , detached from my surroundings , worse in shops or artificial light and groups of people and especially in the dark. Other symptoms would include my surroundings moving , I feel like i am rocking even tho I am perfectly still. I cannot seem to concentrate on movement such as Cars going by , people walking past me, its all a blur. These feelings have lasted 24/7 , every second of every minute of every hour of everyday since I opened my eyes that morning in May. I have been to the docs five times since in which he carried out numerous tests.He says I do not worry him and that he believes there is nothing to suggest it is serious such as a brain condition, he believes it is Labryntitis. I have not been prescribed any medicication as of yet.What I will say is that these conditions have slightly improved in the last two weeks ( I am not quite as dizzy).The first five weeks was awful and It did not help that friends and family do not understand , to them you look fine , if only they realised what we are going through.I go to bed hopefull that tomoro will be better and next week I will be fine but it seems to go on and on. Is there any hope? Since this started I have been constantly on the move trying to retrain my brain. Has this helped? I do not know but I feel slightly better. I have an appointment with an ear , nose and throat specialist in 6 weeks hopefully they can give me something to get rid of this awful condition. I feel for everyone of you suffering from this condition, believe me the amount of times I have asked 'why me' is too long to mention. I feel trapped and isolated as if nobody understands but people do understand 'you understand'I understand and WE WILL get through this. We were all healthy once and we will be all healthy again. Take care everybody and I wish every single one of you a speedy rcovery

DAVID - read carefully what Sam and Kim wrote in their posts as of July 13, 2007. I was also scared by your decision to take steroids. Very bad thing to do!!! Do not ruin your health - do not ruin your life!

Sam - thanks for words of encouragement. In fact, I would not suggest anybody to read this webpage when they are in good shape (in state of remission, dizzy-free). It is really too stressful...

Rich Baker - thinks for maintaining the site for those who have not recovered yet.

Keep going,

Anna

Hello David Unless you have figured out the cause of where your dizziness stems from. I would not be surprised if it is a byproduct of steriods. It may or may not be. But I would pay careful attention to the affects of your body after you have gone of off them.(Steroids) Rhonda

Hi everyone ive wanted to post again 4 a while now but im a horrible typer and it takes me like 2 hours 2 do this so o.k. here goes.I guess im the only one who yawns uncontrolably because nobody replied but I think thats from the E.T.D even though my doc wont confirm this.I do have popping in my ears every time I swallow so the doc does agree that I do have E.T.D. BUT EVERYTHING IVE READ ABOUT E.T.D. DOES NOT POINT TO 7 MONTHS OF DIZZIENESS SO.. I read what foxy said about 2 steps foward 1step back and I absolutley agree. 4 me to realize im getting better I cant think in terms of how I felt last week ... more like how I felt 4 months ago then its like oh o.k. mabey I am feeling a little better . 4months ago i was sleeping 14 hours straight and still not making it through a whole day of work now im working 10 hour days on 8 hours sleep very uncomfortably but i am doing it. my job is very diffacult i am a barber in a very bright very bussy barber shop its hard and if i didnt owne it im sure i would have been fired by now . were asmall shop so i still have to work 4 a living . ive read that LABS or V.N. effects can last 4 several years and thats frightening 2 me because im 33 years old and have completley put my life on hold because of this.me and my wife were trying to get pregnant but not now no way. im afraid by the time all of this ends my wife will have left me 4 anormal person and my life will be over .kind of dramatic huh but its hard to watch every ones life go forward while yours stays still . Anyway the last couple of days ive had a couple of symptoms that i thought were gone ..I get super spaced out like i cant concentrate i almost feel like i cant feel my hands then i shake it off. this kind of thing happened 4 months ago but i thought they were gone does anyone elses symptoms seem 2 come and go like this ? idont want 2 think its getting worse again but i havent felt those symptoms in a while so i dont know what 2 think . im hoping this is how it wears off, mabey it goes from room spinning,nausea, and 15 hour sleep stints to feeling like everythings moving especially when your moving your head to this new super spacieness im having and then goes away . or mabey all these feelings r just cross threaded and in 2 weeks from now the room will be spinning again i dont know . does anybody have any answers 4 any of this? also i only feel good when im completley drunk so cheers 2 anyone whos been dealing with this 4 any amount of time and arestill staying even alittle posative. Big respect to all of you.

paul. been reading posts on this forum.i myself was jogging when it first happened about 7 weeks ago.someone found me took me to the er went into hospital for 10 days.constant vertigo and vomiting on and off.dischared from hospital for the next 3 or 4 weeks starting improving.these last 3 weeks 95 per cent better.back to jogging back to work.tiintis gone hearing was affected but now fine.just the odd bit of dizziness so i feel sorry for people who are sufeering long term.

Hi everyone:

I've been suffering from this basically my whole life. I'm a PhD student who studies the biochemistry of brain trauma, so you can probably imagine that I am well aware of everything in my body that is even remotely related to my brain or physiology. As such, its very scary to experience labyrinthitis. My supervisor (a critical care and neurotrauma physician) basically diagnosed me with chronic recurrent labyrinthitis. Dizziness, anxiety, feeling buzzed, fullness in the ears/head, tinnitus in both ears...etc, everyone knows the deal. Anyway its great to see I'm not alone, I hate this condition, its a royal pain in the ass, and it seems to also affect my liver (because I get extremely tired when it happens). Does anyone here have chronic "coyote" fatigue with their VL?

Also - anyone try OTC allergy meds like allegra or claritin to help the symptoms (e.g., just a massive dose of pseuoephedrine to drain the fluid?)

Take care everyone.

Josh

Things seem easier now I've had medical confirmation of my balance problems, I wish it was a faster process for everyone. For ages I've been asking my boss if we could rearrange the office, a ridiculously small work space - previously a store cupboard. I work with my back to the door so have to swing round to walk out, and have to concentrate or I'll walk into the wall on my left. She couldn't seem to grasp that not having a phone on my desk was awkward because I had to get up to answer it on her desk. When I went back to work in May after a spell off, I had a very uncharacteristic rant about the layout and went over her head to her superior, the matron. I was told work was in progress to make a new reception area in the foyer - something I've been told for about the last four years. When I got a proper diagnosis of inner ear problems, I emailed matron with details, and she called me in for a chat. Two weeks later,workmen have arrived to build the new reception desk ! Gosh, I hope it'll be dizzy-user friendly ! It had been so hard previously to say much because I'd had no diagnosis to back me up, and always felt people doubted what I was saying. Like so many of us I knew in myself that there was a physical problem waiting to be discovered. Am keeping up the VR, increasing the difficulty a bit now, let's hope I'll see some improvement soon. Regards to all, Kim.

To anyone who's worried about flying with VL: Dont be. Labyrinthitis is an inflammation of the inner ear - the discomfort that people feel on an airplane is related to your middle ear - an anatomically, and functionally distinct part of your ears. Generally, flying causes problems because of an inability of the eustachian tubes to open and allow air in to equalize pressure with the atmosphere - and so your ears feel popped or plugged and possibly painful. This has little to no effect on your inner ear, which is made up of your semi circular canals, your organ of corti in your cochlea, and axons connecting to your 8th cranial nerve (the audio-vestibular nerve). The organ of corti (containing hair cells) controls the transduction of sound to the brain, while the semicircular canals connect to a different portion of CN 8 to control equilibrium and balance, based on the position and movement of fluid and otoliths (both sensitive to gravity, linear acceleration, etc).

Long story short - flying impacts your middle ear (and sucks when you have a cold). Inner ears are generally not impacted at all (unless there is a rapid and sudden decrease in pressure but the oxygen masks fall when this happens).

If anyone has any questions about any of this, feel free to email me at bellj@smh.toronto.on.ca - I study the neurobiology of disease. Additionally, if you want to look it up yourself, and textbook or article on functional neuroanatomy will help explain this really well.

Cheers.

Josh

Hia Sam and all,

I have been feeling amazing you know for many days now......and I keep waiting for it to come back! I have been having times of pure bliss and being normal again....100%, like my head feels so clear like water is running through it. Wow! I have been doing my magnesium and started taking goldenseal (an anti bacterial remedy) and plantago (which gets rid of mucosa)! And now and again I am sipping a bit of urine. Check it out on the net and you will be amazed at its powers! Well.........I am sure that this has contributed to my immense well-being. I have had labrynthitis for four months and I didn't think it was gonna end, it was pretty much constant.

I will keep up with the remedies and see how things pan out, but I would highly recommend you all to try it, plus lots of water, soaked linseeds, soya lecithin (the omega oils) for the proper bio-chemistry of the body. I also eat natural yoghurt with the bio-cultures in it!

I hope that you all get rid of this pain-in-the-ass illness and move on into freedom and lightness of being. Josh I think you should try to heal naturally as the drugs you mention supress your immunity!

All the best to you all. And keep tryin Sam, keep smiling and looking for ways to change the illness. I think it is really about what you put into your body and the illnesses own end point! Visualise it in sight.

Love Foxy

Hey Foxy... Congrats!!!

It is awesome that you feel good!!! But beware, it most probably will bounce back and you will feel bad again, but the point is not tos care you, but to let you know to expect it.. Hey if it doesnt, then great,......

The sipping urine, gets me a little skeeved out.. I dont think thats really going to do much for you, considering its what is excreted and what your body doesnt want.. It is also toxic.... Good luck

Sam

Hello everybody!!

I have suffered with Labyrithitis for 11 weeks now and thought I was the only one!!!! It has been awful, although some days I have no "dizzies" as I affectionately call them!!! In the beginning I couldnt get out of bed but now when I have a dizzy I just look drunk and feel sick!!! Have taken Stemetil and Cyclizine although have stopped as made me feel even more spaced out! I am waiting for an appointment from the Ear Nose and Throat Department at the local hospital to see if they can help. Have tried lying flat on my back on my bed and hanging my head over the bed, (as suggested by the wife of another sufferer) but this made me even worse!! Glad there is this site as I now dont feel alone!!!

Bye to you all.

shalx

I went to see my e.n.t. totoday again and even though its been 7 months of being off balance dizzy and pretty much always in a dreamstaste he doesnt think i have labs or vn . he says all i have is e.t.d. because of the popping in my ears he says this can make you feel the way i feel and since i never had true whirling vertigo that it cant be vn or labs. iwant to believe him...shit ihope im just being a baby but i just dont understand how somthing could last this long and not be serious.ive made small improvements but still get completley wigged out in stores or any realy bright places and the more ido the worse it gets . i try to keep everything ass stress free as possible and ive never been afraid of stress befor . to me it seems like i feel the way alot of u do .does anyone think its possable that theres so many combinations of innerear problems that nobody can really truley be diagnosed that mabey alot of people on this site dont have labs or vn or vl or whatever name there dr. gave them to shut them up about it...and mabey thats why some people heal in 3 weeks and others take ayear or 2.ijust dont understand any of this im very confused and very upset please sombody tell me somthing i would really aprieciate it .and thanx rich for this place ,it gives me some place to vent when i feel everyone els is tired of hearing my crap.

In response to your post on Flying not affecting the inner ear, I believe your right.. It probably wont cause any damage to that part of the ear structure. However, just like people with injuries to their vestibular system, they tend to be sensitive to things such as colds etc... Which also a majority of the time do not affect the inner ear... But the whole process of compensation can be affected.... So take what you will from this....

Sam

Hi everyone and Trey from Australia

I live in Western Australia and have had this inner ear problem since March. I could not get any help from my Doctor or ENT and have found reading this page extremely helpful. It helps to know that you are not the only one and I have taken some of the advice given.

My symptoms are: Nausea and generally feeling off most of the time Slight balance problem Tightness in ear (with some pain from time to time) No energy Stiff neck Pain above eyes High blood pressure Anxiety

Because my symptoms are with me 24 hours a day I have felt depressed and anxious that I would have to be like this for the rest of my life.

Good news though - for the last 2 weeks I have been steadily getting better. I will have 2 to 3 days where I am 80% OK and then regress for 1 to 2 and then improve again. I do not expect that I will be 100% for some time yet, however, I feel much more positive now.

What has helped me?

I read on this page about MAV (Migraine associated vertigo) and then went to the recommended site www.emedicine.com. I am not sure if this is what I have, but the symptoms are similar and my Doctor has put me on blood pressure tablets which he said would help with blood flow and MAV.

Also, I take lots of vitamins Drink lots of water Eat lots of vegies and fruit Am now trying to walk every day

Thank you for all your comments and for this site. It gives me hope and I am sure we will all recover. In the mean time look after your bodies and try to stay positive.

Lindy

Mark L. - E.T.D. is apparently Eustahian Tube Disfunction. If you were diagnosed with it you possibly can have excessive yawning because yawning releives pressure in your middle ear anatomically connected with Eustahian Tube. You yawn instinctively. Mark L. - do not be so sad, your wife will NOT leave you for a "normal" person. You ARE normal but you do have health problem. Remember, when you got married you both promised to support and to love each other in sickness and health! Would you support you dear wife if she got sick (God Forbeed!)?

Foxy - I am glad that you feel so good. I have my big-big doubts, though, about one of treatments that you mentioned - sipping urine. All garbage from your body is in the urine. How could it be beneficiary???!!!

Kim - great, that your diagnose of vestibular disorder allowed you to EXPLAIN to your bosses and co-workers your difficulties. We, dizzy people, should by very honest with people who work or live with us. I know that sometimes with lack of understanding dizzy folks consider to change a workplace, unfortunately to change their profession if they do not get better. Mark L. - maybe you have to find less noisy barber shop with less lights around?

Anna

Everybody

Josh's sceintific comments on inner and middle ear structures and functions are excellent. About flying for dizzy people - it is OK and it will not hurt if you keep your nose airways open - use nasal decongestants if you have cold or flu. Yawn chew and swallow during take offs and landing. Drink a lot of fluids being in the cabin - the air there is very dry. Use anti motion sickness tablets or patches - dizzy people are usually more prone to motion sickness. As for me I flew very much (maybe TOO much) for a person affected now and then by Dizzy Monster.

Anna - 55 years old, 35 years with IT (on and off)

Mark L,

That is completely wrong!!!! VN OR LABS does not have to be preceded by whirling vertigo or true spinning. Some ENT's are idiots... Textbook friggin junkies... When they change the textbook then they will say Ooooohhhh... Yea its possible...

Try a neurotologist....

And your not being a baby... This illness destroys you... Its rough!!! We all know that

Anna thank you 4 your comments i agree with you about my yawning but my Dr says its not related. im beginning to wonder if im seeing a quack . he wont diagnose me with anything but does think i have some sort of inner ear problem thats just taking a really long time to heal.the first 2 ent,s i saw shruged me off and said dont worry people get dizzy sometimes it will go away .one of them told me popping in your ears was normal and that hers did it too.WELL ITS NOT NORMAL FOR ME SISTER ! anyway i like my new ent he did a lot of tests and he did find fluid in my left ear but he still wont diagnose me so im still wondering what exactly i have . ive shared with him a lot of what ive learned here and he just says no you dont have labs or vn ...you would have been spinning out of control in the beginning if you had either of these.ok then WHAT DO I HAVE . HE SAYS I dont know exactly but ican tell you what you dont have.does anyone understand my frusteration.ive had blood work done twice EKG CAT SCAN MRI HAD arteries to brain checkd ,i am otherwise perfectly healthy.it seems like most everyone on this page was at some point diagnosed allthough still having been somewhat frusterated by theyre Dr does anyone know of a Dr in southern california anywhere whos worth a shit at diagnosing and not dissmissing this problem .a diagnoses would mean a lot .mabey then i would have an idea how long this awull ride might last. i look sooo forward to having good reports good night everyone p.s. Anna what is IT

Hi to everyone, I,m sitting infront of my p.c with tears in my eyes with one of the most comforting feelings that i've had in months (releavment), that im not on my own with this life changing condition. I have had VL for almost 7 months now after a becoming ill with chronic sinistuis ( sorry not very good at spelling these medical terms lol), and septic tonsillitis. At first it was just a spaced out feeling that i couldnt really describe to my doctor very well. When i first suffered a vertigo attack i was driving although i didnt really know what it was as nothing was moving around me it just felt like my head was spining a bit like the feeling of coming of a merry-go-round which actually led to a pannic attack! My doctors kept telling me that i was suffering from deppresion and anxiety but i new it wasn't so i kept on taking my reguler emergency appoints every week untill one doctor finally recognised that something wasn't right.I was refered to the hospital were i had to have head scans and a EEG on my brain, the waiting for these results on seperate occasions were some of the lowest points in this illness. Finally the results had come back clear i wanted to feel releaved but i was burdened by the fact that i still didnt know what i was suffering with. So after more blood tests with clear results. I went back to the doctors and was diagnosed with meniers disease but when i read up on symptoms some didnt quite fit. I'de been refered to an endroconolagist consultant who recognised that it was VL who has now refered me back to my GP who i now have to go and see to be refered to E.N.T and sit on another waiting list. The tablets that have been described to me only supress the symptoms they dont do an awful lot but i take them anyway. I'm 21 and have never felt depression like i do now as this week i have lost my Supervisors role in the company that i worked for 4 years to get.My moods are uncontrolable and have the constant feeling of inability to cope with day to day things. The uncomfortable feeling of rocking back and for inside my body is my worst symptom as i feel like i have no spine to stable me. I also feel like the floor is moving backwards as im trying to walk forwards and the walls in corridors are moving in and out. I read on some peoples pages that they have problems with trying to use their hands, I find it hard to hold pens or forks i feel like they are slow. I get constant nerve shackes and buzzing through my limbs i often ask if the floor is vibrating as im unable to seperate wether its me or the floor or object im touching. my symptoms are almost i denticle to those of M.E and CANDIDA. I would also like to comment on the flying which i found fine i've flown 4 4hr flights this year the only thing i found was that the exhaustion of travling made my rocking motions hard work to try and get through for example waitin for the suitcases to be unloaded on to the belts were my werst points.Brain fog dont even go there but then i never been that quick lol. Also i find i'm at my most comfortable when i've had a drink of alcohol as long as u drink responsibly i found it relaxing and took the edge of my balance motions although u should check if your able to consume alcohol with ur medication. Ok well i've shared my story with u all hopefully i've helped someone out there as so many of you have helped me today. Thank you all for sharing your storys u really have made me a happier girl xx

For people who are visiting their ENTs and finding little to no relief. I would recommend that you tell him or her that you want the following tests done:

1) ABR - auditory brainstem response test. This measures the transduction of sound from your organ of corti, to your 8th cranial nerve, to your superior olivary nucleus, to your inferior colliculus, to your medial geniculate nucleus of the thalamus in your brain. This test is excellent for detecting an acoustic neuroma, and you want to have this ruled out if you are having persistent dizziness or losing hearing.

2) ENG - Electronystagmogram - This is a test that measures the function of your vestibular system. Get it done.

3) ECG - Electrocochleograph (not electrocardiograph) - This measures the function of your 8th cranial nerve in a different position. Get it done.

In addition to these tests, get your blood work done.

Meniere's disease or endolymphatic hydrops (basically characterized by chronic dizziness, tinnitus, sometimes hearing loss, pressure or fullness in the ears) is largely idiopathic (no known cause). There are tons of emerging theories related to trauma or allergies or microbes, but the only way to deal with these types of conditions is to treat the symptoms. Whatever makes you feel better. Diuretics, anxiolytics, pseudoephedrine, ibuprofen, whatever makes the symptoms go away, even for a short period of time.

Josh (suffering along with you, just happen to have an area of research specialty in cellular/molecular neuropathology and neuroanatomy)

Hi Rosie and Lindy and everyone else,

I am really grateful for this site and for all your posts. It really helps to get through the bad days to know that others are going through the same thing.

After feeling mildly better for the past week or two, I am really having a bad few days. Pain in ears, dizziness and all the rest.

I also have an extremely sore jaw. Does anyone else ever get a sore jaw? It really hurts when I open my mouth wide.

Am seeing the doctor on thurs so hopefully he will have some suggestions. Otherwise I am just going to rest it out.

Thanks for all your thoughts and advice. Hope you are all coping.

Josh - your comments are amazing! I think, that if you make this area - I mean vestibular disorders - your main research interest you can become a great specialist. As far as I know, there is very little knowledge and a lot of just speculation in this really questionable, mistical in this area. So many people suffer and so many lives are ruined by this condition.

Dizzy folks - I agree with Josh - do ANYTHING, that makes you feel better - less dizzy, less headachy, less tired.

Never cover up, never pretend.

Anna from OK (currrently doing better with immunization shots and gluten-free diet)

Thanks Anna! I was actually discussing this today with someone in my lab - this really is an area where so little is known about the underlying pathology but it is a problem that affects SO many people and really doesn't discriminate against male/female, old/young, rich/poor, etc. It really is a debilitating thing to have to experience at any point in your life, and it is such a confusing and sometimes misleading array of symptoms that can really be attributed to anything. Dizziness can be a respiratory problem, a vascular problem, an anemic problem, a problem with Hemoglobin-Oxygen binding, an inner ear problem, a brain tumour, anxiety, stress, and the list goes on forever. You can get tested till the cows come home. There is a dire dire need for a way to narrow down what's attributable to inner ear dysfunction and I think I'd be interested in this for sure.

.THANX SAM 4 YOUR COMMENTS, well i saw my ent! AGAIN!!!! i see him every couple weeks and yet AGAIN he asured me i dont have anything 2 serious.i asked 4 a number 2 a neurotolagist and even though he thought i was crazy he gave me a number.then i asked if he thought i should see an allergist since i have etd in both ears , to my surprise he thought this was a good idea.ok here we go..... the allergist took one look at my tounge and up my nose and asked if i had a nasal cat-scan,no i said i have had a ct and an mri of my head but not of my nasal, as i dont have any sniffles or any nasal preassure . he said a lot of people dont show signs of sinus infection but still have cronic sinus infection wich is one of the main things that cause eustation tube dysfuntion and futhermore sinus infections can cause dizzieness to! he said i had a lot of mucos on my tounge and up my nose and he sent me to get a ct scan and said come back in two hours. i came back like he said he looked at the disk and guess what???? ... i have a massive sinus infection blocking my eustation tubes!!!!HE COULD NOT BELIEVE NO ONE HAD RUN THIS TEST. acording to him all of my symptoms are normal for this type of sinus infection. i pray to god hes right since i had had three head colds and strep throat just befor all this started,although i didnt feel sick when i actually got dizzy and i havnt really gotten very sick in the last seven months besides the dizzieness and all of its related problems. Serieously though why did my ent not run this test!! i asked him to on numerous occasions and he said it would have shown on the mri of my head.BULLSHIT! I JUST DONT UNDERSTAND DOCTERS!!! i dont have insurance so i have been paying for all of this myself and the ct of my head was only 250$ wich is cheap compared to alot of the other tests hes had me do.WHAT THE F MAN. ANYWAY i guess this isnt a guarantee but its the first real diagnoses ive had in seven months. The doctor now has me on 400mgs of Avelox, zertec, and flownas which is making me feel worse but he says to stick to it for 3 wks and we'll go from there. so lots of prayers! i'll keep you posted!

Josh,

Research this for a few days and let us know what the cure is. Thanks for helping out :)

In all seriousness... There is definately a need for a breakthrough in this area.

Josh - if you decide to go do research in Dizziness/Vertigo area - I will provide you with a whole lot of very deep interesting books and articles on this theme from my own library. I started my research through Internet back in 1995! Just let me know by E-mail.

Ladies and gentlemen - we are all together, we KNOW what you are going through.

Do NOT allow Mr. Dizzy Monster to terrify you!

Anna ("crazy" Russian from Oklahoma)

Hi all, here's a thorny little question. How do people handle employers with regard to dizzy/balance problems ? I ask because I'd considered changing jobs a couple of months ago, and the application form had the question, " Do you consider yourself to have a disability ?" That really made me stop and think. If I put "No," and then start tripping up at work-or indeed at an interview,how can I back track. If I put "Yes," they will probably want some explanation how it could affect my work, and the answer is that it's unpredictable, but doesn't generally interfere. Last year I was asked to take on ordering stationary for several departments. I said that while I was happy to do the ordering, physically keeping the stationary cupboard neatly stocked would be a problem. The shelves go up to ceiling height, and I wasn't prepared to climb a ladder carrying reams of paper, as this could put me at risk from a fall. They were a bit surprised,but asked someone else to do the job. Has anyone had help from Occupational Health ? I don't know if this is a useful route to try. Generally I keep my head down and get on with things, but anything that would help is a bonus. I've decided to stick with my present job for now and see how the vrt works out, who knows, I may not have this problem too much longer. ( Not holding my breath, though !) Wishing you all well, Kim.

Kim: My advice is that you are completely honest with your employer, new or old, as soon as you feel there is even a remote possibility that it could interfere with your work. As soon as I started having issues, I told my boss (now, my boss happens to be a critical care physician/neurologist so he understood the problem) but in any field, you should tell them immediately. If it doesnt affect you at all, and work goes on as normal, great. If it does, there's an explanation. However, if you try to stay silent and you are prevented from performing at 100%, you can get into trouble. You shouldnt worry about losing your job if you claim you have a disability (because it is illegal to fire someone for that). Most people have been afflicted by illness in their life, and will show compassion. If they require documentation, get some, I'm sure an ENT or GP will be happy to give you whatever you need, if the condition is in fact affecting your work.

Cheers

Josh

I just checked into the site for the first time in months and was pleasantly surprised to see that a bright young person currently involved in the field of medicine is considering our pet ailment as a focus for research! - Go for it Josh. ............ for the advancement of medicine, for the sake of your personal career, and not least of all for the sake of humanity in general. The field is wide open as far as I can see, - you have the opportunity of maybe doing something really worthwhile with your life.

You might be interested to know that I sufferred with chronic ear problems ( recurrent bouts of spinning vertigo, ear pain, disorientation, -the whole bit ) for over 20 years but have been free of this for 2 years now.

How did I recover??? I stumbled onto this site and began scrutinizing very carefully what was being and not being said. Eventually, someone mentioned that a kind of extreme diet of whole grapefruit with a heavy emphasis on vegetables was the key to her recovery. I tried the grapefruit thing with surprisingly positive results. My wife and I became very interested in diet in general and after reading everything we could on the subject we decided to stop eating ALL animal products. The outcome has been phenominal! I also used to suffer from recurrent migraine attacks ( the classic aura accompanied sort ) and whether they were associated in some way or not with the dizziness, ........ they have ceased entirely as well.

Understand me. I am not a "bleeding heart" animal rights advocate, and I have no particular axe to grind concerning vegetarianism. I am actually of a very pragmatic, even scientific spirit, - not easily swayed by mysticism. With this in mind, please take the following reference I'm going to suggest to you seriously: " The China Study " - T. Colin Campbell, PHD., ......... A careful reading of this book could change your life, - it and others certainly have changed mine and broadened my horizons in many unexpected directions. I know Anna and others are already well aware of the role of diet in management and prevention of disease and have altered their habits accordingly. - a special hello to all you people and continuing thanks to Rich.

Fond Regards, Tom.

Thanks, Josh, I think this is good advice, nice to get some input from someone outside my normal circle. My present job is on a neurosurgical ward in critical care,I keep my boss informed if I'm having a bad day,work colleagues know I have some trouble here and there though not any details. One time I'd had a couple of days off, a young doctor asked me why, and I said I had a balance problem. She said," Yeah, these brain tumours can be catching," and walked off ! This was shortly after I'd had an MRI to check things out, or such a thoughtless comment could have freaked me a bit. Think I'm probably better off where I am. Certainly reminds me that there are a lot worse things that happen in life. It sounds kind of dramatic to say I have a disability, but there are things that I find hard to do. Happy to say I'm doing pretty well at the moment,I hope other folk are feeling good. Regards, Kim

So Tom -- You recovered by eating only grapefruits and veggies everyday?? If so, how long on this diet did it take you to see results?

Wow, I can't believe how long this thread has been going on for!

I first posted about my labyrinthitis back in 2003 - my comments are on the very first page!

Unfortunately I have returned here, 4 years on, to say that my labyrinthitis has returned. Still the same awful symptoms, but at the moment I am experiencing some different ones such as throat/neck stiffness and earache. Hopefully this is a good sign and means I'm compensating again, but this is so very demoralising to find out that this wretched illness can re-occur years after it originally reared its ugly head!

Sometimes I wonder why I bother getting up in the morning.

Sorry to have you back here flux.... It stinks for this to re-occur... But I believe that if you have had this illness in the past, you are likely to be susceptible to further aggravations and or re-injury. This is my 3rd time... I got over my first episode fairly quickly in labs terms... 8 weeks... But each subsequent time has been worse for me...

Sam, it took a couple of months of going pretty much pure vegetarian before I noticed that there really was a big change occurring. I still, at that point was consuming dairy products so I don't know if the results would have been quicker had I dropped all animal protein right from the start. About a year into this experiment when my condition seemed to be a great deal better we decided to even drop the cheese etc. from our life. All the protein you need is easily had through eating vegetables alone. You get a hell of a lot better nutritional value as well and it's this that bolsters the immune system to help you fight off disease. It's one of the greatest myths of our time that the more meat you consume, the stronger and healthier you'll be. In actuality the more dead animals you consume, the sicker you're going to be!

You know to tell the truth I used to think that any discussion of diet was the most boring thing in the world and that vegetarians were all just a pain in the ass. Things change Sam. All the years of suffering with this ear/balance disorder have ended by opening a whole new window on something I figured had no relevance to me at all. Now, I can't believe how blind I was considering what an obviously central position food has in our life! I had thought I was a pretty hard bitten non-conformist but now I see I was just conditioned like all the rest to think that meat was "real" food. Wrong. Things evolve. Folks used to think the earth was flat until they learned otherwise.

So, you have a choice. You can wait for EVERYBODY else to catch up, which may take 20 or 100 years, or you can take this little tip from me and start moving towards the head of the line where the Physicians and PhD's who have already done the research will tell you how immeasurably better off you will be with a meatless diet. As painful as it may seem to you at this point, ( I know it's hard to read with this condition - I've been there ) ..... Check it out. Maybe your recovery won't be as complete as mine. Who knows? I would be more than surprised though if you don't find some improvement at least. Again, I think the best source of info at the moment is " The China Study " by T. Colin Campbell PhD. You'll be amazed. Anna and others by the way, already know about this stuff and have altered their eating habits accordingly. I'm sure they would be happy to answer any questions you might have as well. I wish you all the best and hope this can work for you as well, Regards, Tom.

Hi! I just want to thank you all for sharing your stories. Misery enjpys company. I have been suffering with this illness for approximately 4 months. I, too, like all of you continue to be startled by "flare-ups" (dizziness, ear popping and great sensitivity to noises). Others who have never experienced these terrifying symptoms have no idea of how handicapped we can all feel at times. Some things that have broght me great reliief are taking Allegra every day and exercising using a tread mill. On a tread mill, you are forced to balance, and although, at first, it is a little unnerving to attempt to balance, I believe that it is a great wat to re-train your brain. You control the speed and the intensity, so you only increase these things when you feel able and ready. The only thing that is bothersome is getting off. Cooling down and gradually reducing speed and intensity is critical before jumping off (otherwise, your body will still feel in motion and dizziness is inevitable). Also, drinking a ton of water and limiting caffine and alcohol are crucial. I'm not sure if this helps, but, after hearing all of your stories and finding comfort in your words, I felt the need to contribute what has helped for me! Be strong! This too shall pass. Kim

Flux - You said: "Sometimes I wonder why I bother getting up in the morning." Never-ever think like this. You get up in the morning to LIVE!!!

TRY your best to stay positive.

Anna (35 years with IT)

hi all, it's been awhile since my last post. one thing that finally showed up in my blood work was a very high IgA (immunoglobulin A). The normal range is 0-400 and mine is 558! People with low IgA have more frequent colds and I figure since mine is very high I may have too many antibodies and therefore am having an autoimmune response. IgA is found in the EARS, eyes, digestive tract, and breathing passages. I have had symptoms in all of those areas but the worse symptoms have been ear-related. the docs don't normally test for Iga but mine showed up incidentally when they tested me for gluten intolerance. i don't have gluten intolerance by the way. i have asked the docs about this and i get very vague answers. it makes a hell of a lot of sense to me especially since all the symptoms wax and wane like autoimmune disease does. anybody out there ever have a high IgA reading? just curious. megan

Tom - ALL animal products that you excluded from your diet. You did exclude dairy. But do you eat EGGS???

Anna

Hi Megan:

Very interesting post. Though your mildly elevated IgA (it is very mild) in and of itself is not a hallmark of autoimmunity, there are other specific blood tests that you can have done (particularly one that tests for sulfoglucuronosyl glycolipids has been shown to suggest autoimmune inner ear disease) that may be better indicators of you having Autoimmune Inner Ear Disease. This condition is quite rare (1% of people who have hearing loss suffer from it). Do you have hearing loss? You almost certainly would if you had an autoimmune condition of the inner ear, as it can also cause neuropathy of CN VIII (hearing nerve). Do you have any history of autoimmunity in your family (rheumatoid arthritis, certain types of diabetes...).

In any event, if you have any more questions about your blood work, keep asking your physicians. But for the record, your IgA isnt that "high". Also, generally this Ig is present predominantly in the gut and respiratory tract, and mucosal linings.

Final note: You arent by any chance an alcoholic? Elevated IgA is often a mark of alcohoic cirrhosis of the liver. But if your AST/ALT numbers were okay (these are your liver enzymes) you can rule this out.

ciao.

Josh, No I am not an alcoholic. My liver enzymes are fine. I know that autoimmune inner ear disease is rare. I am in the health profession too as I am an occupational therapist with 15 years in neurological rehabilitation. my aunt has rheumatoid arthritis and my mother had psoriasis. other than that everybody dies in old age of cancer. my dad's mother died at 18 so no one knows what she had as no one ever knew her. i know iga is found in the gut and i have gut symptoms as well as respiratory symptoms. the most disturbing to me however are the ear symptoms (constant tinnitus, ear fullness, ear discomfort like a deep burning, dizziness) which is why i post more about them. an elevated iga is also associated with diabetes, HIDS, and nasopharyngeal cancer among other things. This crap started over night and over a year ago. I have been to 12 doctors not including the 3 vists to the er when this started last year. i STILL have no answers. Oh and 5 of the doctors were 2 ent's, 2 neurotologists, and 1 neurologist. i have recurring bppv in both ears which in the absence of otologic conditions is most likely an indicator of systemic disease. i have petechiae (i don't think i spelled that right) spots that come and go. lupus and ra have been ruled out but i didn't think i had them anyway. there are other autoimmune diseases that can affect the ears as well as other organs (i.e., sarcoidosis). I have a mild hearing loss in the left ear however because my hearing was never tested prior to this crap, could have been too many rock concerts. i like most of the folks on this site are fed up with the damn doctors who know nothing. i wish i could give them all a dose of this %@#! for a week and maybe instead of patting me on the back or telling me to call them if i get worse, perhaps they would change their tunes. In case you're wondering, no I have not had a head injury to induce bppv. and for some reason my hemoglobin and hematocrit are climbing and i have researched all the reasons for this. and no i am not dehydrated. i do not have polycythemia vera. i was tested. this response, although a bit irate sounding is nothing personal. I am done with doctors for now. i know why you have to pay co-pays upfront as you may not get your money's worth after the office visit and not want to pay. i honestly do appreciate your response and the part about being tested for the glycolipids. maybe i will do that some day. megan

Megan: If I may make a suggestion: It sounds as if you are doing too much research into this. I do not know how solid your knowledge of immunology is, but there is no way that a mildly elevated IgA would give you an autoimmune reaction, particularly not in your GI tract, lungs, and ears. If you say you have BPPV, (which there is a very concrete, physiologic cause for) then this only further confirms that your inner ear problems are not autoimmune. You say BPPV "in the absence of otologic conditions" and is an indicator of "systemic disease" - I'm sorry, but this comment does not make sense. BPPV is an otologic condition, confirmed by Dix-Hallpike. Did you have this done to confirm BPPV? If you did, then I am not sure where you would get the idea that your problems were autoimmune.

While I appreciate that you have experience in rehabilitation, I think you would benefit perhaps from a bit more knowledge of the pathophysiology of inner ear dysfunction, as well as fundamental immunology. If your doctors have no answers, it is not because they are lazy. It is because, to put it bluntly, you do not have any symptoms to suggest anything more than what you've been told. That doesnt marginalize the inconvenience - however, just because you have, like all of us, a terribly annoying condition, does not mean it has to have one underlying pathology.

You will worry yourself sick if you spend hours on the internet reading things without knowing everything you need to about the molecular biology and biochemistry involved.

Megan, Josh and others:

I like the following Josh's notion: "You will worry yourself sick if you spend hours on the internet reading things without knowing everything you need to about the molecular biology and biochemistry involved.". My BRAVO-BRAVISSIMO to you, Josh!!!

Megan-

You mention you have stomach problems also. Have you done any research on MSG sensitivities? Google "nomsg". I changed my diet and reversed much of my dizziness and migraine problems after reading on Msg. It was a long shot at the time, but I had nothing to lose and everything to gain. You may remember reading past posts on this board from people in the same boat making changes to their diets and finding relief. Like I said, it was a long shot, but it worked for me, and many others who magically disappeared from this board. Just a suggestion.

lol, thank you Anna. I just think it's silly to do research online into underlying conditions without first knowing a fair bit about what it is you are reading. If computers were meant to diagnose people, we would have no need for doctors. We could just place every symptom imaginable in a big table, along with a whole slew of diseases and conditions and allow people to decide for themselves what it is they have. Specialists are specialists because they see "specific" conditions every day of their lives. If a neurologist/ENT doesnt offer a firm diagnosis, it is because you do not have the symptoms fitting said condition. It is not because he/she is stupid/lazy/doesnt care. You can go online and read "but it could be this or this or this" - however, you would be kidding yourself if you honestly believe that the physicians you have seen have not ruled out all of these possibilities because of absent comorbidities. It is VERY arduous to become a board-certified specialist in any area, and if you are to trust anyone with your health, it should be these people, and not people who rant and rave in online forums :) or on webmd or otherwise.

Hi All- it's been a couple of months with sadly, no change. I've been to 5 ENTs and Mayo Clinic. I am and will be forever deaf in my right ear, but that's not earth shattering- I want my balance back! I still am not driving further than Publix, still using the walls to walk straight,...basically no change since it all began and it's been 4 months. The last doctor at Mayo said "just get out and walk....that'll help." I've always been one to work out alot but haven't been able to do anything for 4 months- I've started walking the beach every day for a month and the only difference is my spirit is better for it...no balance but I feel good walking. I'm looking into surgery to disengage balance indicators in my right ear so I'll receive indications from my good ear only- one of the ENTs has a pilot patient he did this to and the pilot is flying again. I'm an air traffic controller but I'm not able to work not only because of my lack of balance but because of my lack of hearing. Going out on a disability retirement since I'm 2 years shy of my normal retirement. Anyway, if anyone has heard of this surgery, drop a line. Take care all- Donna

Fair enough Josh, but a couple of things.

Doctors are not "God", and just because they have an "M.D" after their name doesn't mean they are good at what they do.

I also believe a good many people on this board have been misdiagnosed with "viral labrynthitis", kind of like a "catch-all" "garbage-can" diagnosis. It is my opinion (and who am I ??)that people with true VL get over it in the 4-6 weeks that Doctors so quickly state when they make the VL diagnosis.

If I had listened to the 10-12 Doctors and specialists that I had been to 2 years ago, I'd still be on my couch, probably drugged up on meclizine, Xanax, antidepressants, or worse.

I thank the good Lord, that I had the smarts to go online and research my condition, because not one of the specialists I saw had the time nor concern. If you don't fit "the specific conditions" (your words - not mine) they hand you a script for drugs, take your money and show you the door.

If I sound bitter, its because I am. Its difficult to be sick for an extended period of time, but its absolutely "grueling" to have specialist after specialist tell you they don't have a clue what is wrong with you.

Sorry Josh - I completely disagree.

First of all, I'm very glad that you are only "marginally inconvenienced" by your condition, but you obviously don't have "this condition" to the extent that many on this board do. Maybe you haven't read the pages and pages of people who are completely devastated - lives totally turned upside down - single parents unable to work, etc... you obviously are able to function quite well if you are able to continue your studies, however, count your blessings, because there are many of us here who aren't. Please don't knock anyone here who strives to find answers if they aren't getting them from t