Sharp Blue: Labyrinthitis Comments, page 8

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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 their doctors.


Oh, Josh, you do sound a little harsh there. Maybe you have been lucky in your dealings with the medical profession, but not everyone has. I spent two and a half years telling various docs my symptoms and being told they could offer no help, neurologists and ent. Once I got second opinions, a new neurologist and new ent both recognised that I had inner ear malfunction. Now I'm doing supervised vrt, there has been a slight improvement over the last few weeks. Why did I have to wait so long for this help ? I was telling the same kind of specialists the same symptoms. The second opinions produced a different response, which seems to be correct because the treatment is working. I do agree that you can read too much into things and that at some point you have to accept your lot in life, but that is different for everyone.


Kim and Nancy and others:

I probably should've stated initially that I am Canadian - and our health care system is much much different here (for those of you who have seen Sicko you will know what I am referring to). For me, a visit to an ENT to no avail isn't emptying my pockets (because its free) and so I cant say I know what it's like to feel ripped off. And I apologise for that. However, please dont marginalize my condition, that's not fair. I have felt it all. I have persistent (and I mean persistent 24 hours a day) ringing in my ears (and ive had it going on 10 years). I get dizzy spells every single day at work, and am forced to stop what i'm doing. I go to bed around 930 every night because I am so dizzy by the end of the day that the only remedy is rest. I have pressure in my ears that makes me feel like im wearing a football helmet too tight - and have had brain fog so bad that I couldnt even have a conversation with a friend on the phone. Trust me, I have had it ALL. The only point I was trying to make was that if you are going to trust someone with your help, it should be a specialist. Not the internet. I am not saying doctors are gods. Believe me, they are not. When I am done school, I will not be a god. But doctors have a wealth of knowledge that most people do not have. Specialists in particular. Please do not misinterpret my comments. I only wrote them because it is so concerning to read about people trying potentially dangerous techniques that they have read about online (eg large intakes of vitamins that are more likely to harm your kidneys than benefit you at all, drinking urine, abstaining from certain necessary foods, etc.). I hope this doesnt make anyone lose faith in modern medicine. There are doctors out there who do care a great deal, and try their hardest every day. I am very sorry to anyone who hasnt experienced a caring, brilliant physician, because they really are life-savers.


Guys, I think some of you are missing Josh's point. I dont think it was meant as an attack on people seeking support on the internet, but merely as a reminder that The Internet is for "Informational Purposes Only". Its a great tool and it can help, but it is not meant to be used as a diagnostic tool. There are many conditions out there that have iverlapping symptoms etc.... and we ourselves are not qualified to diagnose ailments, even though some think we are.

I think Doctors do not understand this illness and that is why we get so upset, because the one person that is supposed to have training and all the answers doesn't. So we go out searching on our own... How many people at the origin of this illness thought they had a brain tumor or something, or even MS..... Its only when those are ruled out by a doctor do we even feel better....


You tell him Nancy! And thanks Kim you gave me hope. I saw an ENT today and he checked my ears and gave me a hearing test and said there's nothing wrong with me. I got upset because not even he could help me end this ear thing i've now had for 8 months. So he said because i was 'quick to upset' my ear issues are caused by anxiety and sent me on my way. He barely even let me ask any further questions or let me explain exactly what was going on. I figured he was my only hope. I didn't think there was any point in getting a second opinion. But now I can see that maybe there is.


Thank you for understanding my point Sam, I appreciate that very much.

I want to comment further to the "doctors are not gods" comment made earlier. Indeed, they are not. Yet its almost as if people on here expect them to be. It is because they are not gods that they do not have all the answers. If they were all knowing and all powerful, they wouldnt leave you shaking your head. So you are setting a double standard by stating that because they are not gods, they should not be treated like them, yet at the same time you expect them to know exactly what is wrong with you. This is unfair, and is a testament to knowing little about the practice of medicine. You are only going to come out disappointed if you expect one person to know exactly what ails you. This is an unrealistic expectation, and you yourself have admitted that physicians are only human. So if youre going to disrespect them, please, dont expect them to offer a firm diagnosis.


Hi There,

I need some help. I have self-diagnosed myself with labyrinthiitis. It started with a feeling of my head/neck shaking or having tremors. I really noticed it after lying down and getting up after waking up. After that, I got virgito and dizziness. The virgito went away but I'm still in this brain fog. I feel blocking in my right ear (left seems fine). when I try to massage my neck I hear a 'wooshing' sound of what I think is fluid blocked in there. I've had a slight hearing loss which I've had for approx 1.5 years but just thought my ears were full of wax and didn't bother to get it checked out until I started experiencing more symptoms. I was suprised to find that I didn't have any wax build-up and that my ear drum appeared normal. My Dr. had no clue as to what was wrong even though I did indicate to her that I felt something was wrong with my inner ear.

So now, I have to go back for a 3rd time in 2 weeks to get a referral to a specialist. I just hope I've pinned down what is wrong with me. I do seem to have a couple of symptoms which I didn't read about.

1. feeling of head shaking/tremors 2. shaking hands, arms, fatigued muscles etc.

I'm a Mom of 2 small boys (1 yr and 3 yrs) so fatigue is normal with me but I have a harder time picking up my kids for an extended amount of time.

I've been most suprised about the anxiety and feel that maybe the shaking is anxiety related. Hopefully now, I will have some sense of reassurance that this is what I have and it's nothing worse wrong with me.

Please let me know if anyone experienced tremor like symptoms or a feeling of shaking in the head/neck but with no noticable shaking. also, I also noticed that my small motor skills are worse and have a difficult type typing accuratly.

Thanks in advance,

Christine

xtine@sympatico.ca


Hey Josh - I think you are on the wrong board. You have a chip on your shoulder. I do think you will make a great "whatever" it is that you are going to be someday. Your know it all attitude fits perfectly in the medical field.

As far as "disrespecting" them, well they need to EARN my respect first. Respect is not something that automatically comes with a medical degree.


Josh, if you were suffering greatly with a medical situation that was affecting every aspect of your life and you turned to a doctor for help and they just checked a couple things then sent you on your way saying "you're fine", how would you feel? Doctors are the only people who all of us ailing people can turn to because they are supposed to be trained to help us and paid well for it. Part of being a doctor is to care and to try and figure out why someone is feeling like they are on death's door not to shrug their shoulders and say, "I don't know what more I can do for you." or "you're just depressed, here's some Prozac." The ENT who I saw, wouldn't even listen when i'd explain my symptoms. How can someone respect certain doctors when they act like that?


To Anna , no eggs either only plant based foods .To those who haven 't read "the China Study " By Dr.T. Collin Campbell it's a 'must' read. This Dr. began his research in nutrition as a meat eater, scoffing at vegans and ended up by advocating that the healthiest diet to prevent most of our diseases of affluence , heart, cancer diabetes etc. is plant based. He and his whole family have been vegetarians for 20 yrs. now. He has thoroughly and exhaustively researched the subject over 40 years!We can all benefit from his research and learn from what he has written.I think when our bodies are topped up to maximum health then we are able to fight off the "dizzies " whatever their cause. This has certainly worked in my case. This is not a 'dangerous diet' but a truly healthy way to live . And it's easy,just stock up on lots of fruits and veggies, make wonderful salads and soups round out with nuts and beans,whole grains like brown rice ,whole wheat bread . There's lots of variety and it tastes so good! Bon Appetite ! and Good health to everyone,you can do it! Tom


You're right Nancy, we shouldn't respect doctors. They're useless. Who needs em. Just have your babies at home, scan your own brain when youre worried you have a tumour, take your own blood and interpret the results, and make sure to stay up for upwards of 30 hours at a time administering anaesthetics to patients in the OR while they have brain surgery or a liver transplant. Bring some towels though, it can get kind of messy.

Your ignorance is what perpetuates frustration among doctors, and frankly I dont feel the least bit bad for you.


Christine,

You had a question regarding the shaking and motor skill problems. From what I know, there are people who definately have motor skill issues, so this could definately be related to Labs if that is what you have. About the head shaking... I am in the middle of a Blip (setback) and I get this every morning for the most part. In the beginning of this, it was incredibly severe.. I could not even stare straight... miserable feeling.... It kinda feels like your heartbeat is in your head, but beating faster.

Go back to the doctor armed with what you know. Have him refer you to a ENT or better yet a neurotologist -- These guys are supposed to be the smarter and they would have alot of experience with Dizzies, but they tend to be harder to find.

Any nystagmus? Balance Issues? Hearing Loss? Tinnitus?

Have them do a hearing test.. With my latest episode, I have some hearing loss in the higher frequencies.


Nancy,

I haven't seen anyting to suggest Josh has a chip on his shoulder, rather his argument does reflect a certain bias towards the medical field, but then again, many statements here display a firm displeasure for the same.

Take what you will from the point, however like in anything, if your expectations are high, your setting yorself up for a fall.

go to the doctor.. You may find a good one.. and believe me there are good ones and bad ones just like in any field. We shouldn't necessarily discriminate based on 1-2 individuals.


Laura: You asked "if you were suffering greatly with a medical situation that was affecting every aspect of your life and you turned to a doctor for help and they just checked a couple things then sent you on your way saying "you're fine", how would you feel?"

How would I feel? Considering this has happened to me a half dozen times, I can tell you categorically how I feel. I feel disappointed in the realization that no one knows whats wrong with me, but a deep sense of relief and satisfaction that upwards of 3-4 board certified specialists haven't mentioned anything serious, or are telling me to be worried about anything. If you are just fishing for a diagnosis, that's not going to help your symptoms. If your doctor said "You have oompaloompitis, but unfortunately, there's no treatment" would you feel better? Do you just want to know what youre suffering from? For me, an idiopathic problem is fine with me - because that means its nothing to be overtly concerned with. Stressing out about the fact that they dont know what's wrong with you/us is only going to exacerbate the problem. It's almost as if people on here are frustrated with the fact that they arent receiving a diagnosis of "you have a brain tumour" or an AVM or something that could kill you - No diagnosis isn't a bad diagnosis - it just means medical science, at this point, isnt sure exactly what is wrong with you.

I implore anyone who is on here to go to medical school or get a PhD in pathology or cell biology and devote their life to finding cures. You might then gain an inch of understanding into how medicine works, and how hard you have to work to become a physician or scientist. I am so sick of people complaining about incompetency. If you think you could do better, get your own MD and diagnose yourself.


Sam - Yes, I agree. Many statements on this board DO display a firm displeasure for those in the medical field, including mine. However, Josh really hit a nerve with me, because he obviously is educated in so much that most of us aren't.

His response to Megan on August 11th, suggesting she is just plain ridiculous for researching her problems on the internet, is what did it. Everyone on this board found this site by researching this condition. I don't know your history, may I ask? Are you satisfied with what your doctors have told you?

I am a single Mother of a 6 year old, who had to quit my job due to this illness 3 years ago. My husband died of cancer 2 years ago. I no longer have health insurance (obviously), so I no longer can get referrals to any more neurologists, neurotologists, ENT's or specialists of any kind. When I see my GP, I am required to pay up front, the day I go. The first 2 years of this illness, I saw all of those specialists, had all the tests done, did all of the very same things you all have done. Why condemn someone for doing research on the internet, just because they aren't educated in the medical field? Yes, there are some VERY scary things you find when you start researching your symptoms, but its OUR BODIES - everyone should do whatever it takes to be able to function day to day at their very best.

As far as having high expectations, maybe I do, but I won't ever believe that I'm setting myself "up for a fall", and my discrimination, as you call it, is not based on just 1-2 individuals.

Sorry for the long post. I really don't think this kind of discussion belongs on this board. I've always come here for support, not to "bash" or "be bashed". Sorry guys.


to josh, I dont think anyone expects docters to be gods we just hope that they will treat us like human beings not fucking cattle .I dont know how much money shitty ass canadian docters make but in but in fucking MONEY,MONEY,MONEY,america docters are fucking rich so they should treat people right ,meaning listening to our problems and I mean listen all the way through and if they have no answer than refer us to someone who might,dont just drug us up to shut us up. I dont have anxiety depression or high blood preassure but have been put on medacine for all of the above and if you know anything than you know thats bullshit.IM NOT A FUCKING LAB RAT!they make way to much money to dismiss these things so easily .Mabey you really havnt felt the way most of the people here have if you can be so inconsiderate .Look here Josh im a grown man I was never given anything I grew up rough and thought I was rough but this thing has broken me down so hard that half the time I think im dying.My point is that this post is where people go for support not to be treated the same way they have already been treated so if you dont have anything good to say to make all of us non canadians feel a little better or at least not so alone than please with all due respect SHUT THE FUCK UP NERD!


Hi dizzies, Lookng at the site now fills me with sadness, We seem to have let it fall into something for arguing on, Surely rich doesn't let us use it for that? It's to get some help with this labs/vestibular stuff, Lets try to keep it sensible.

Just a few thoughts which may be of help for some of you, think of your inner ear as the body's gyroscope, if this is damaged in any way you will be dizzy, clumsy, fatigued and have "brain fog" amongst other symptoms simply because your brain needs to work harder than normal to keep you upright.

Re the doctors being so good at what they do?, I had a radical mastoid op to remove a cholesteatoma in 1996, The anesthetist came to me just before the op and told me I had a small throat and getting a pipe down my throat was difficult, he told me not to worry as 1 person out of a 1000 have this and all would be ok, a little later on his assistant came to me and said the same thing, I told her I didn't believe that they could wind me up so much before an op.

Anyway even after all their reassurance I came round in the recovery room vomiting blood! so much for their comforting words, I also managed to take the packing out of my ear and it had to be put back by my consultant.

Since then I have suffered from eustacean tube problems, Then in 2004 the dreaded labs hit me four times in one year! I have been referred to the ent, which has a special department seperate from the hospital which cost 15 million pounds to build, I have been at least 16 times in three yearsnoone listens to me, they all have their own theory and still I suffer, the last one I saw was a professor, he was the same as all the others he knew everything and knew nothing, he said I had beaten the panel and there was nothing else the ent could do for me, he said the eustacean problem was from reflux, I have had so called reflux for 25+ years and coped until the op/labs kicked in.

So, get the best out of the docs you can manage, they can't know everything but some of them, as I found can be so arrogant when they want to, and don't seem able to think anything they haven't seen could exist, remember aids? no one knew about that in the 70's. maybe we have something they just don't really understand yet.

Anyway, I now cope the best I can with this nonsense, and nonsense is what it is, I can't make any sense of it anyhow! lol, still, try to find your own way of coping whatever you need to do is right for you if it helps, listen to the doctors but don't take what they say as written in stone, your body tells you when it is ill if you take notice.

All the best of health to all of you, and thanks again rich for giving us the privilege of using this site.

Mick.


Hi I've been reading the posts on here for the past hour or so with interest. I am grateful to have found others who are suffering the same weird sensations that I am and have been for about 5/6 weeks now. My GP has diagnosed me with viral Labyrinthitis and referred me. I'm still to have further tests, MRI, bloods etc to rule other things out, but the more i read here the more I am convinced this is what I have - and it's good not to feel alone. The earlier posts in particular were very useful and offer hope and support - and some useful suggestions. Thank you and i will continue reading.


So I have a few questions:

I have been "dizzy" (not really spinning, but feeling like my head is going to fall off my shoulders, like I'm on a boat, my body seems to respond slowly although I know it's not... just all these strange sensations!) for about 3 months now.

6 months ago I was diagnosed with viral neuronitis and was given Antivert and that helped tremendously within a week.

Now, I have been to a few different doctors and my ENT did an ENG and said that everything is fine, but she suspects that I have BPPV or a strong case of VN that will last months. That's encouraging.

My arms and legs are really tingly, along with the front of my face - is this all normal? I haven't been to a neurologist, but my ENT doesn't think that it's anything neurological to be worried about. My eyes are also blurry, but I haven't had my eyes examined in over 5 years, so I believe that's my own fault. Oops. :)

I've had to postpone my last semester at college and I haven't worked in a month and a half due to the severe onset of my symptoms (which seem to be constant now - sweeeet).

I start Vestibular Rehab in a week and a half - is this successful?

I thank you for your responses, take good care of yourselves because it seems like no one else will.


Mark:

Dr. Wilder Penfield, degrees from Princeton, Johns Hopkins and Oxford. Arguably the most famous and accomplished neurosurgeon of all time. Canadian.

Dr. Frederick Grant Banting, and Dr Charles Best. Isolated insulin. You know anyone who has diabetes there professor? You can thank these two that they're still alive. Canadians.

Dr. James Till, Ph.D. at Yale University, established the concept of stem cells and set the framework in which stem cells are studied today. Youre right, he's probably a "shitty-ass" canadian too. Yes, he is.

Dr. David Hubel - Nobel prize in medicine and physiology, founder of the field of modern research of the visual system of the brain. His studies showed how the human visual cortex is organized, and how this cellular organization can be modified by experience. Shitty. Ass. Canadian.

Dr. Hans Selye - You know how a lot of people have chalked up your condition to stress? You're right, that is the fault of a Canadian. This guy is the discoverer of the biologic stress response. A distinguished physician and endocrinologist, his theories on the role of organic responses to emotion, illness and injury have revolutionized our understanding of the causes and mechanisms of disease and of the mind-body connection. Canuck.

Dr. Henry Friesen - Hormone replacement therapy. Invented it. In Canada.

Dr. Charles Scriver - Rickets, phenylketonuria, and hypothyroidism. Cured them all. Havent heard of them? That's because they dont kill people anymore. And that's because of him. Also a Canadian.

Dr. Oswald Theodore Avery - Discovered that the substance (i.e., the gene) that could transform one type of pneumococcus into another was deoxyribonucleic acid (DNA). One of the most pivotal discoveries of the twentieth century. Canadian.

Dr. William E. Gallie: Invented new methods in orthopaedic surgery, including the transplantation of bone, the implantation of tendons, and skeletal traction in the treatment of fractures and dislocations of the spine. Canadian.

Aside from these idiots above, the University of Toronto is currently ranked 2nd in the world in biomedical research and productivity. Just thought I would make you feel better - You're paying more for less competent doctors. Only in America.

Cheers.


Nancy et al:

Sorry I upset you - My posts dont ever have that intention - However, you are misreading what I wrote. I suggested that Megan's research into her condition was doing more harm than good, as it lead her to nearly making an inaccurate diagnosis of herself. Do you think it is appropriate to research conditions if you dont understand (ergo, know how to interpret) what you are reading?

I am sure there are plenty of brilliant american physicians, and I think by putting down your entire health care system (something I was playing off of in my previous post) you are exacerbating your cause.

What exactly would you like your ENT/Neurologist to do? They do a CT, they do an MRI, they do a neuro-work up, they take your blood, they look for a history, and if they determine there is nothing wrong with your brain, YOU ARE NO LONGER THEIR RESPONSIBILITY. They will refer you to an ENT, or send you on your way with a clean bill of health. The job of a neurologist is to rule out any problems with your brain. Once they do that, they have earned your money. This is the only place where I've heard complaints about a clean bill of health. Are you getting your money's worth when they tell you youre dying? Would that make you feel like youve gotten more bang for your buck?

In any event, an ENT will do an ENG, an ABR, an ECG, and determine if you have an inner ear problem from there. Unfortunately, there are no available bonafide treatments for these sorts of disorders because they have no known cause.

If youre not a lab rat mark, expect not to be treated like one. That is, expect NOT TO BE TREATED FOR SOMETHING YOU DONT HAVE. Would you like to go through chemo or radiation for the brain tumour that you dont have? Or get injections of L-Dopa or go through DBS for the parkinsons that you dont have? Or perhaps you'd like a daily dose of interferon for the MS that you dont have?

There is only so much a doctor can do. Christ. And finally, for the love of god, stop making ignorant statements about how I havent been through what you've been through. You grew up rough Mark? Send me an email and I'll enlighten you as to my upbringing. It's not a competition people, this isnt a board about who can suffer the worst, and all those who dont complain the most arent as afflicted. That's BS. It's a board for support. And I am TRYING to explain to people who are frustrated with their doctors that they need to take a second look at the entire situation, and what exactly they expect from their visits.


Gail,

I have had similar symptoms to you - ie dizziness, tingling in the hands and feet, blurry vision and face/jaw pain. I am sure that these are caused by whatever I have wrong with my ears as I had never experienced these symptoms until I started having ear problems. You're not alone.

I have just started seeing a vestibular physio myself so am not sure if the exercises work, but am willing to give anything a go to get over this.


Josh,

Many people on this site come here after their condition is diagnosed, not before. Many also come here without a firm diagnosis, but they were pointed in this direction by a physician. I dont think there is anything wrong with researching a condition you are diagnosed with or semi-diagnosed with. This really is a patients best option.. In some cases, it is the research of the patient that actually saves their own lives... Diagnosis is one thing, research is another. I come from a family of 6, 4 of Which are MD's and I am grduate school educated, and I know where to draw the line.. for all your education, your rant in response to Mark L's frustration shows that you missed the point of his message entirely. instead you chose to focus on the "shitty ass canadian" statement... Absurd

Nancy,

I dont think I ever got so extremely upset at the Doctors for what they did not know.. But mayeb I would have been had I not had insurance. I stopped visiting them for this reason a long time ago. I have had this illness for 2 years, not all of which has been bad btw. In the beginning I had to take disability from my job.. I just could not function.. I struggled for months.... It wasn't until 9 mionths or so until I started feeling better... Yes its a trying disease.. It knocked me out.. I was severly depressed that I could not rationalize what was happening to me.. It drove me nuts as I couldnt pattern match this disease. Either way, I found a doctor (ENT) who never made me come back every 2 weeks to check on me. -- he was a family friend so he never charged me.. but I understand where the frustration comes in.

Sam


josh. I guess you kind of missed my point.I know Canada is great ive seen sicko its your uncompassionate statements latley that made me mad. we pay here and still get treated horribly .Some of my favorite stuff comes from canada seriously SWOLLEN MEMBERS, SWEATSHOP UNION, GEORGE SAINT PIERRE....the list goes on im not questioning Canadas greatness or abilaty,shoot I wish I was from CANADA Im only saying that one canadian who claims to have had what everyone els here has had has been horribly inconsiderate latley and you sound like the asshole no it all docters who arent doing anything for all of us.WE dont have a choice where to be born josh and I guess you only read and hear selectivly because I wasnt really talking about your country.Pleas open your eyes...you seem way smarter than me but you still dont seem to be able to do that!


josh. I guess you kind of missed my point.I know Canada is great ive seen sicko its your uncompassionate statements latley that made me mad. we pay here and still get treated horribly .Some of my favorite stuff comes from canada seriously SWOLLEN MEMBERS, SWEATSHOP UNION, GEORGE SAINT PIERRE....the list goes on im not questioning Canadas greatness or abilaty,shoot I wish I was from CANADA Im only saying that one canadian who claims to have had what everyone els here has had has been horribly inconsiderate latley and you sound like the asshole no it all docters who arent doing anything for all of us.WE dont have a choice where to be born josh and I guess you only read and hear selectivly because I wasnt really talking about your country.Pleas open your eyes...you seem way smarter than me but you still dont seem to be able to do that!


Touche Josh, like someone said - I think you are on the wrong board.


Im sorry guys but Ive been reading over the two latest posts from josh again and again and I cant believe JOSH that all you got from what I said was "shitty ass canadian docters". If you would have really read it you would have understood that I was putting down american doctors more than anyone ,and sure you're right they're great at birthing babies and interpreting blood samples but they're not so hot at figuring out this problem,so dude im sorry if you took it as an attack on canada when i was really just mad at your comments ,they sounded hurtful in nature and very arrogant.If the people here are anything like me than they are tired,scarred,and most likely angry and thats what I was "ANGRY" WHEN I READ your comments to nancy and some of the others.Anyway im sorry to everyone els for turning this thread into a personal battle between me and josh from canada,I wont do it anymore,but josh really man you have no idea of the kind of person your talking about so if you really want to leave your e mail be my guest ill get with you , remember this isnt the land of free medical and unlocked doors ,people throw thier babies in trash cans 'n shit here so we can mow over war stories aannyyyyy time! talk to you later joshie . xxxooo


I dont want to raise false hopes, but I potentially have an answer to most everyone's problems.

I had a visit today with the head of Allergies and Clinical Immunology at the University of Toronto. After extensive testing, he identified in me an allergy to Alternaria, a common airborne species of fungus. When I did a literature search for clinical manifestations of alternaria allergy, I found a lot of work demonstrating a "neuropsychological-like" condition. Dizziness, loss of memory, fogginess, weakness, fatigue, etc. There is one such report that shows 12 cases of this.

My advice - get to your immunologist and get tested for Alternaria and other airborne mold spores. You can get shots against these.

Cheers.

Josh


This is cute, the Americans are overreacting to my defense of Canadian medicine.

Mark, I read your posts. They are incoherent, and involve a lot of complaining. I'm not going to waste my time responding to comments that you're treated like a lab rat. That's your opinion. However, rest assured that this doesn't mean I didn't read your ramblings. Your hugs and kisses were very nice. I appreciated them.

Nancy, Sam, Anthony, and the rest:

One day, you're going to get to a specialist and receives a life-threatening diagnosis. Maybe then you will all finally shut up about not receiving one.

One day, you can look back and see how much better it is to receive an answer of "I'm sorry, I dont know" instead of "you're dying". Christ, each one of you takes your life entirely for granted, as you piss and moan about not having a death sentence handed down to you from the doctor you "paid so much" to see.

Sorry you havent gotten your money's worth - Keep reading and ranting about how horrible doctors are, as I'm sure that's going to help. Public online forums are a much better way to heal yourself. And I agree, it makes a ton of sense to spend hours researching a condition, without someone to put statistics or symptomology in perspective.

You're going to figure out what's wrong with you before a board-cetified specialist is? Best of luck, you're living in a dreamworld.

In any event, you're all getting really boring. Instead of sound advice, I hope you benefit from Mark's paragraph long sentences. This board is like the blind leading the blind. No wonder none of you can see anything. And Mark, your knowledge of Canada is so impressive. You've seen two Michael Moore films (about as inaccurate a depiction of Canada as I've ever seen) and have a couple of CDs. You should run for Prime Minister.

Cheers, I'm outtie.


Hi again dizzies, Couldn't help noticing josh's comments, seems like he will become one of those doctors who spit out their dummies when everyone takes what they say with a pinch of salt, because they are sooooo arrogant and cock sure they are right, We are the ones who suffer when they are wrong but they don't have all this to cope with after the appointment we have with them, They go home a bit tired, we go home no better off!

As I have said a few times now, Your body will tell you when it is ill, get the best you can from all who treat you, do what helps YOU, whatever that is, within reason.

Illness is boring, to those who don't have it, the others go on their merry way, some a bit richer, if we could only guess how much cash is made from people suffering? it's an endless stream of income for the pharmacutical industry.

Anyway folks, take care, good luck and good health to you all.

Mick.(obviously boring too!)


bitch,oops I mean josh IM sorry my paragraph long sentences are disturbing to you,nobody here besides you has ever made me feel like Im being graded on punctuation.you seem very word smart but socialy retarted . Anyway Im sorry to every one els again ,I really do feel that ive gotten a lot of help here and I wish everyone here the best .You are all in my prayers. I have to admit josh made me mad but the worst thing is that I keep feeding in to it ,so Im going to try and stop now because you cant win against some one who knows everything. Im still not feeling good but all the anti biotics and allergie medacine is doing somthing . Thats what this place should be about ,HOPE,and the freedom of knowing your not alone.

bye everyone

and josh from canada ,I know your readind, good luck I hope you become a man some day.


Hi, my name is Al and Ive recently turned 21. About a month and a half ago while telling a story to friends i experienced sometihng similar as to what a panic attacked is described as. I couldn't put a simple sentence together, my face got very warm and felt like i was going to pass out. It was very brief but frightening. The next day i was fine but the day after that i experienced a constant feeling of anxiety that has lasted consistently ever since. The anxiety went away for a week or so but then returned completely out of nowhere. My hearing seems to go in and out every now and then as well, light headed at times, trouble focusing and reading simple instructions. What concerns me most is that I find it very hard to talk/joke around with friends and close ones as i was able to before this initial "panic attack". I'm usually very funny and quick witted but now my head feels clouded and am unable to make a quick remark. I find myself much more quiet and apprehensive. I have this feeling just about all day, everyday. I just started my senior yr of college afew days and am finding it hard to think or focus on anything my teachers give me. Sometimes in class it feels like a surreal experience and everything is vivid. I got prescribed xanax acouple weeks but it helps only some of the time and not all that well. If anyone can let me know if this could be anything close to Labyrinthitis, or just anxiety/depression I'd appreciate it.

Al


Al

I dont know what you have but it sounds very simalar to what a lot of people on this board went through in the beginning,I know I did .I think thats why they try and put a lot of people on anti anxiety meds ,you may or may not need them,wich is why they may seem to work only some of the time. THE way I have come to understand this dizzy thing is that when you get dizzy for no aparent reason its very easy to have a pannic attack .I thought I had agoraphobia in the beginning because every time I went into a grocery store I got more dizzy,but now I understand its because of the lights and noise not the human interaction. Hopfully they will figure out whats wrong with you really fast and youll be better but if not I can assure you the pannic part of it will fade away.

good luck.

P.S. it could be labrynthitus or 5000 other things ,dizzieness seems to have the same effects no matter what the ilness but I think labrynthitus has some of its owne uniqe symptoms .Make your docters check though ,if you suspect its not just anxiety dont take no for an answer.

again good luck


I think we should get back to the topic at hand, instead of this bickering. Josh is obviously just here to flame, not to mention being ignorant, and obviously a moron. Oh and if you read this Josh, who is receiving the life threatening diagnosis?? The doctor? Idiot.. Your comments make absolutely no sense.. completely ridiculous... And just so you know, free enterprise will always attract the best and brightest Doctors from around the world. Canadian medicine is absolutely dwarved by American medicine. Get things in perspective, and stop tooting your own horn.... Your one mediocre medical professional out of a small community of slightly better than mediocre professionals. Medicine is not only about knowing what the etxtbook says, but also the personal touch involved... Also, your theory in the fungus is stupid... If thats what your problem is thank god you do not have what we have, because you never understood it anyway. Just like everyone else, until you experience this disease you can never truly understand it. Go treat your athletes foot and gt a life.

Sorry to add to the fire here, but I hate ignorant people.

Sam (mensa +1998)


Hi Al, What you're experience is indeed panic attac. I've experienced all the symptoms you described and some more... I got rid of panic attacs by going through a program from panic attac "expert" Lucinda Basset. She wrote a book called: From Panic to Power, and I tell you, it will turn things around for you. Like you, I had panic attacs, was sent to a doctor, got prescription drugs, was dependent on them, but after a while (after many different types of therapy), I decided to try something else, and the only thing that really helped me, was this course by Lucinda Bassett. You can start by reading the book, and then buy the course. By the way, I do not work for Lucinda Bassett :-) I am just trying you to help you as a private person. Do not worry, once you understand why you're having these panic attacs (you'll get an explanation in the book), you'll learn how to get rid of them. Take care, and feel free to ask me more about Panic Attacs - I'm kind of an expert in this area. Pat


Hi everyone, It's been a while since I wrote. I have some news, that I think will help a lot of you out there with Lab. Because of the many months with this condition - 8 months now - I've felt fatigued, lots of muscles aches and back pain as well - besides the other symptoms: ears full, brain fog, and off course, dizziness. Lat week I went to my doctor for the zillionth time, but this time, my doc didn't have time to see me, so I saw an intern. She was very nice, and told me she thought I might have D vitamin deficiency. She sent me to get some blood tests. Well, the results came back today, and Bingo! I have SEVERE D vitamin deficiency, which gives all the symptoms above, PLUS it seems to cause LABYRINTITIS!!! I'll start treatment next week. Since my case is extreme, I'll have to start getting weekely shots of D vitamin, and take lots of tablets. I read a lot about this deficiency, and the most incredible is that 80% of all adults in the northern hemisphere have some kind of D vitamin deficiency, but not as severe as mine, BUT those that do have severe D vitamin deficiency do have dizziness - Lab! Well, I think everyone that suffers from this dizziness monter should check with your doc about D vitamin deficiency. Good luck to you all!

Pat :-)


Trey,

Thank you, it's good to hear that I'm not alone!

The sweating, hot flashes and everything associated with the dizziness/lightheadedness and tingling arms and legs all drive me CRAZY! I feel like I'm going to die, but I know I'm not - I just can't stop researching "brain tumor" or "MS" online - someone needs to take the internet away from me!

Again, SO glad I'm not alone - I hope things work out for you, I hope everyone with some sort of vestibular/balance problem can get the help that we need to move on with our lives!

Good luck with you Trey - and thank you to everyone who helps out with this site, it puts my mind at ease (which eases the "attacks!").


Hi, dizzies

I was absent from this site for some time. It was a battle here, unfortunately..... It is not a right place. Sorry for that, Rich Baker.

Update on my situation. I am feeling BETTER (!!!!) with a combination of: gluten-free diet, anti-histamines, weekly food-allergy shots (designed personally for me) and Paxil (serotonin-inhibitor). I am absolutely happy to report, that I am less dizzy and shaky, more stable and more balanced than a year ago. My mood improved significantly - my family and close friends can see this with their own eyes! This is obvious especially for those who did not see me for a year or a couple of years.

Sorry for not responding to newbies and oldies - I am TOO tired and weared off by my struggle with THE MONSTER.....

DO NOT LOSE HOPE, friends. Do not fight, bless your hearts....

Anna, 55-year-old Russian-born from Oklahoma (35 years with Mr. Dizzy, on and off, the current bout started in November 2003)


Al, I think you should be talking to your doctor about this, In my opinion you seem to be suffering some kind of anxiety/depression symptoms, the vagueness etc you mention is also a part of it.

Good luck.....Mick.


Have been away for a while, and am kind of shocked by some of the posts that have been going on. Things seem to have stopped recently - is Rich away or has this all come to a sticky end ? Personally, I was so relieved to find this site, it seems a great shame for things to peter out. Thanks Rich for all your effort.

(You're welcome. I'm still publishing comments within a day or so of when they arrive.)


Hi, dizzy people!!!!

Many of you have great releif to find this website which made it possible communication among people of different degrees of vertigo, dizziness and related to them headaches, panic attacks, anxiety, depression, etc. etc...

Everybody are DIFFERENT here. The only one thing (important though!) we all are losing our sense of BALANCE (literally and in work, in life, in relationships). Some of us (like myself) are unfortunately so ill, that they have lost their jobs and are mostly housebound. Hope, that there are not so many of such individuals.

And even such a lost cause like me - I have been doing better in the last several months (!!!!). Diet with lots of vegetables and fruits, beans, very little salt and sugars, plenty of rest, just TIME did their healing job.

I want to THANK Rich Baker from all of us - I think everybody will join me in this HUGE THANK to Rich's efforts to keep this website running.

Rich, I assume, is very busy with his life and work - maybe it is time to let him go. What do you think, ladies and gentlemen?

There are other websites, where you can find support, knowledge, UNDERSTANDING like dizzylounge, VEDA (vestibular disorder association webpage) and others.

NEVER LOSE HOPE. YOU WILL BECOME BETTER SOME DAY!!!

Good luck to all of you. I will keep you in my heart. I love you, people!

Now I am hurrying up to go on with my life.

Anna from OK (35 years with Mr. Dizzy, the current bout started in November 2003)


Me too, I am shocked at the things going on on this site lately.

This site has helped me through some of my darkest moments and I think that, as there are more and more people suffering from this disease, we still need something like this to keep us going. None of us are looking for a miracle cure, just someone to understand what we are going through and to pass on tips etc that have worked for us. It really does help to know that others are suffering and you are not alone.

I have had another bout of this thing and have been off work again for 2 months. I am back on the road to recovery (again!) and have been back to work for 5 weeks with no major problems. Still a bit shaky at times but it passes.

Anna, I have been taking anti histamines like you and feel that they have helped me a lot. I have suffered from hayfever this year, which I have never had before. Must be all connected! I don't have the persistent unsteadiness that I have had since my first attack nearly 3 years ago, so that's good!.

Anna, I'm sorry but I disagree with you about this maybe coming to an end, we cannot let that happen. Rich is a godsend, who would do this for him? Yes, there are other sites but this is a good one and we should fight for that. I know someone is trying to sabotage the board but should we let him win? Can his posts not be blocked? I think the best thing to do with people like this is to totally ignore them and they will soon get sick that no-one is taking any notice.

Kim how are you, have you been better? I noticed one of your posts mentioned getting your words mixed up and that certainly happens to me! But mind you I notice a lot of 'normal' people do it too (especially my hubby), so maybe it's just our age!

Take care everyone.

Sandie x


I think I'd prefer to have no editorial policy beyond screening out spam. I don't want to get into deciding who should and shouldn't be allowed to post, or on what subjects.


Hello everyone, Let me start out by saying I was a healthy 27 yr old, an 2 months ago I had a surgery to correct my deviated septum, by a supposed very esteemed facial plastic surgeon ENT. Well, ever since my surgery, I have basically been living a personal hell. Although, I can breathe now I have been stuck on a daily basis with completely terrible symptoms such as, constant spinning in my head, dizziness, flickers, blurred vision, extreme pressure in entire head, mind blowing headaches, basically I feel like my head has a life of it's own and the best way to put it is it feels like a "bobble head doll"...Everything that I used to enjoy in life is no longer possible, working is miserable, due to these feelings, esp the dizziness becasue I can control the headaches. I have seen 3 nuerologists, balance centers, had MRI, CT's, ENG you name it run on me all coming back normal. Most nuerologists want to say I have migraines or anxiety which I have NEVER had before, and I know in my heart is not the cause. I personally wonder if I nerver got hit and damaged during my surgery causing me to feel this way, that's undetectible? I was on 3 week dose of prednisone which did help the vertigo and I have cut salt, sugar, alcohol, and caffeine out of my diet the past month...Now that I am off the prednisone, which they will not allow me to have more of all the extreme dizzy sypmtoms are back. And once again I am feeling miserable. I just wanted to reach out to any of you all and see if you have ever heard of anything like this or could provide some remedies or any advice? Thanks a lot, Andrea p.s. Meclizine did not work at all on me, has anyone tried equitab? Do these even work at all on spinning sufferers like us?


Andrea I was wondering what your origianal symptoms were,I mean why you got the surgery in the first place.Were you having trouble breathing,sleaping,snoring etc... because ive heard that a lot of people have slightly deviated septums and dont really need to have them fixed. The reason im asking is because im about to have surgery for sinisitus wich is different but they go in the same way. Ive been light headed and dizzy for nine months and after seemingly every test in the book all they can find wrong with me is a massive sinus infection that wont go away even with medacine.The doc says this is plugging my eustacian tube and that is why im so dizzy/light headed. I was told that these kinds of surgerys were simple and had almost no complications,now im freaked out. When they did the surgery did they clear tour sinuses as well.It sounds like they fixed your septum but some how plugged your sinuses and eustacian tube in the process,I dont know if thats possable or not but this thing sure sounds wierd . you found the right place though .

GOOD LUCK


I have written to this board before a few times. I suffer from bouts of labs. I've had it three times in the last year and half. Once last July, once in February of this year and again in March of this year. Since that time I do get dizzy every once in a while. It only lasts a few seconds or minutes and then goes away. It usually occurs when I am involved in vigorous exercise, am really tired or turn my head very, very quickly. I think I still have a small balance issue with the inner ear. I hope this doesn't mean that I will get the severe dizziness I felt back in March again! Has anyone had any experience with just having small issues like this many, many months after an attack of labs? Does anyone know the chances of having a labs relapse?

Andrea, Meclizine or related products have never helped me. It might help if the problem were sinus related but if it is an inner ear issue unrelated to sinuses or allergies then it probably won't help. I wouldn't assume that your symptoms are a result of the operation. I know it may seem that way but a lot of things seem related and they really aren't. That isn't to say that it can't be related but it isn't necessarily so. I've never tried equitabs, I wouldn't mind trying them though. The website really makes them sound like they'd work but simple solutions like these are probably not the answer. Unfortunately, we are all stuck with this and if there was an easy solution there wouldn't be message boards like this.

Anna, I'm so happy to hear that you are doing better! I do have to agree with Sandie though. I think this message board is a great comfort to a lot of people and it should be continued. Although I do respect Rich's time and if he doesn't have it then we will have to sadly let this board go.

Thanks for listening.

-Ravyn


Hi, everybody

Sandie and Ravyn - maybe, you are right both. We should comfort each other in our darkest times.

If this site (with Rich's kindest help!)is so important to so many suffering people - it should be continued. Please, disregard my earlier words. I just CANNOT leave people in trouble...

Rich - are you tired of the load of editing the page? Answer frankly, please. Nobody will be offended.

Anna


Andrea, if prednisone was helping you, then you obviously need some sort of anti-inflammatory in your system. I felt i had a second chance at life when i was on one. Unfortunately the one i took was too strong. Warning, if anyone takes Naproxen, it's dangerous if taken for more than 10 days. I felt more normal when i was on it. But a more mild anti-inflammatory is Pentasa. It's normally used for crohn's and colitis but i found it started helping my eustacian tube inflammation to a degree too. The only reason i'm not taking it now is because i developed serious stomach problems and am afraid to take something that might cause more problems. (if prednisone was well tolerated then Pentasa should be fine. Your doctor may not prescribe it though if you don't have intestinal inflammation, but maybe he will. It takes about five days to a week to start kicking in.


hey guys i hit two years last week and over all im doing alot better. i just got over a blip from a cold that i had but im doing better today. life goes on. what a long stange trip its been.

by the way...who the hell is this josh guy? is it cool these days to come on a support group and be an ass to people??

i hope everyone is doing better

anna!! its great that your finally doing good again!


I'm still perfectly happy to edit the comments, Anna. I think people got the wrong impression from the long period recently with no new comments. It wasn't that I wasn't publishing them, but rather because nobody was making them. (Or else they were disappearing into the spam folder and nobody was complaining.) I try to publish every comment within a day or at most two or three days.


Hello everyone, First of all I have to agree with chris's statement (glad to here you are doing better.) I would lik to suggest that even though 99.9% of these posts are sincerly from the heart, not everything posted on the web is ligitiment. (Sorry on the spelling)I am very glad to here that Anna is doing better. After reading alot of the posts again,it sounds like allergies is a leading cause to our problems whether food or outside caused. Meagan, I wanted to know how you are doing hopefully improving. I also would like to let everyone especially meagan, that I discovered flaxenseed oil through more reading acts as an anti inflamatory. I have been off of all allergy medicine for 2-3 days and that aggravating throat,ear pressure swelling is still under some control. I am going to give the allergy skin test, allergy shot method a try. Which is why I am reframing from allergy medicine for five days. I have also been very succesful with niacin 250mg twice a day, and vitamin b6 100 mg once a day.The niacin keeps the pressure to a minimum.Also Veramist helped keep the actual vertigo at bay. I had one bad day after 5 months of only regurlar allergy symptoms. And the veramist acted insantly. So for me I am hoping this tells me allergy realated. Hope this helps and everyone continues to do well. One more thing I am also still doing the acupuncture for the stiffness in the neck and that has had succesful resutlts. I have found once every 6-8 weeks to be benifical without hurting the checking account to much.

Thanks For listening, Rhonda Hope this site continues to be a succesful one,


Hi Sandie, glad to hear you're feeling better again after your bad patch. I'm having a glitch myself, it's been a bit of a kick in the teeth as things had been improving. Got hit with a virus just after starting new vrt, and between the two, I've been feeling very dizzy and off balance. Unfortunately, it's stressing me out just now, which I know also doesn't help. Usually I try to be positive, that's not so easy at the moment, but I'll get back to it. My job will have to take a back seat while I get a bit straighter, I'm so dizzy half the time that I can't think properly. Don't want to play this anymore ! Had a good talk with my husband, he's being great as usual, but it's really only fellow dizzies who can fully appreciate the sheer relentless nature of this. Hadn't posted for a bit as I didn't want to moan, now I've gone and done it !


Sorry to hear about your relapse Kim, I agree with you I dont want to play this game anymore either. I have a question for anyone who is familiar with supplements but mostly for Anna or Meagan since they seem to be knowledgeable. Has any one heard of Lipo-Flavonoid. It is supposed to be a ear health formula. I have looked it up on the web but have not found anything helpful it contains vitamin c 300mg vitamin B1 1 mg vitamin B2 1 mg vitamin B6 1 mg niacin 10 mg vitamin B125 mg pantothenic acid 5 mg calcium 130 mg choline 334 mg bioflavonoids 330 mg Inositol 334 mg

I would appreciate any insight on this

Thank You Rhonda


Hi, Rhonda

Lipo-flavonoid is probably a good supplement - at least, it is not supposed to harm your ears My ENT doctor, who is a good doctor, prescribes lipo-flavonoid to all his patients with ear problems. It did not help my severe problem but my case is very bad.

I am still on my way to recovery. Not sure to what degree I am going to "recover", but I have been getting more and more optimistic month by month. Slow-slow-slow progress.

My family and friends can see a big difference in my activity level (remember - I have bee completely housebound just a year ago).

I am still learning how to deal with Mr. Dizzy. He (Mr. Dizzy) is an annoying guy, but I am NOT terrified by him any more!

Hugs, Anna


Hi Kim

You say your job is taking a back seat at the moment, can I ask where you work and how much sick time you have had?

I worry so much about this. I am just a sales assistant but I do need my job and I work in a garden centre which is privately owned. They have not said anything about my time off and they pay SSP but I feel absolutely terrible when I do have to take time off due to this illness. Up to date I had 5 months off when this thing first hit me nearly three years ago, then I had a five week lapse, then a couple of two weeks sick time and then this one at ten weeks. I get so scared I am going to lose my job over this. Can they actually do anything to me? Does anyone else know?

I have not been feeling too good this week though I have still managed to work. Maybe the fact that two of my oldest have left home and gone to university is stressing me out a bit! Or maybe it's just the fact that I have had a cold again!

Take care

Sandie


Hi Sandie, having kids leave home must be pretty stressful, even if you're happy they are okay, it's a big change in your life. My eldest will probably go next year to uni, I know it's part of life and feel confident that he's an independent young man, but will miss him a lot. I have a clerical job in the nhs. Haven't kept that close a record of how much time I've had off,something like sixteen weeks over first year of this, then a good spell, six weeks earlier this year,on my third week off now. Have not been given any warnings or anything. Was sent to occupational health at one point for an assessment, they said I was fit for the job longer term. If your employer hasn't said anything to you, surely that's a good sign. Wouldn't know USA employment laws, but here you'd have to be given oral and then written warnings before any termination of contract. It wouldn't be out of the blue. I feel a bit guilty about not working sometimes, letting colleagues down, but there's not a lot I can do. Bet other people stay home for lesser things, we stick out days when it's a struggle, but there are times you have to call a halt.


Anna,

I am so glad you are feeling better and that you are not so terrified of Mr Dizzy anymore.

I think in a lot of cases the fear plays a huge part in this illness. As soon as you start to feel dizzy you start to panic which makes you feel worse. I still panic a little now when I am at my worst.

I know you have had this illness for a long long time Anna, but have you had it ALL the time or have you had times when you have been completely symptom free? I have had this for nearly three years now but have been symptom fee for months at a time. Was it like this for you?

I suppose I am just wanting to know whether or not at this late stage I could actually get rid of Mr Dizzy!

Take care.

Sandie


Hey everyone Im having sinus surgery tomarrow...the dr that found my sinus infection says hes 70% sure Ill get better,the dr thats performing the surgery says he just doesnt know,so I guess its 50/50. either way all of your prayrs would be very apreciated. God bless you all,Ill keep you guys posted even if I do get better. bye for now


Thank God I found this page. The day before yesterday I got a bout of dizziness all of a sudden. Since then, I continue to feel dizzy, disoriented, and foggy in my mind, particularly when I turn my head side to side or up and down. I don't feel much discomfort with my ear but had a throat infection not long ago which, from what I understand, is often a prelude to Lab. Today I'm going to the doctor, because I leave to Europe in two days and am worried about these symptoms on the trip. For now, I've had no nausea. But I feel tipsy, as if I've had a bit too much to drink but minus the alcohol. I'm hoping that whatever I have is mild enough to be suppressed by medication and also read that its OK to fly with lab. Can anyone chime in on this?


Hi Kim

You seem to be following the same pattern as me. I've had this for nearly 3 years now. Five months off at first then a couple of shorter periods off work then this last one of 10 weeks. I am of the old school and wouldn't take a day off unless I really had to. But I still worry that I will lose my job. I am a pretty loyal person! I am UK too, up in the north east.

You are right in that loads of people stay off for lesser things and who would stay off willingly anyway with the rate of sick pay in this country?

At the moment I'm having some really bad spells at work, ended up in tears yesterday, but it is passing after an hour or so and then I feel ok. I'm back to taking stemetil, just one a day for the three days a week I work, hopefully I'll wean myself off them soon. I get so sick of this illness - you feel great one day - and then it kicks you in the teeth again.

Take care.

Sandie


Does anyone hear whooshing sounds in their ear? I suppose what I hear is blood flow but I also hear blood rushing past my ear after I stand up after bending over. I was told by my ND that it's 'conjestion' perhaps due to inflammation but my GP has no answer and is just referring me to an ENT.

I'm freaked that this could be something worse.

Any suggestions whould help!

xtine@sympatico.ca


Just another note to let you all know that I've been feeling better and better - most of the time I feel good enough to not let it bother me. I'm coming up on 3 years and had a particularly bad case - extremely horrible. I've changed my diet drastically almost 3 years ago, etc. I've been to all the specialists and gone thru all of the tests. I think a big part of recovery is taking care of yourself in all ways. There is a lot of good info on this board and it has comforted me time and time again. Get this, with those tremendous ear/dizzy problems I had for the past three years, I've been feeling so much better that I went to a Rush concert at Madison Square Garden - loud. I wore ear plugs, of course, but I went! That's something I thought I would never do again. To me, that's huge! I hope you all feel better too (quickly or over time). I thought I'd have this illness forever but I am happy to say that I don't fear that anymore.


Beatlemark- Can you let us know what you did to change your diet? Do you feel that has made the biggest impact????

Thanks! Glad you are feeling better


Hi Kimm,

Thanks! I hope you recover soon too.

Yes, I feel changing my diet had an overall positive impact on my symptoms (and in general). I'll list some of things I changed about my diet but I'm not sure what helped and what didn't. And keep in mind that your body needs some or most of these nutrients and that you have to be careful and consult a doctor about your diet, etc.

I don't think there is anything special that I did. I just kept cutting out foods that I felt were bad for me in some way. Sometimes I had suspicions about what triggered my symptoms and cut those foods out (dairy and citrus are 2 examples). I think it is fairly common knowledge about what to eat (in moderation) and what not to eat in general and I finally had a reason to change my diet.

Foods I omitted: Too much sodium (recommended by specialist - I believe this had the largest positive impact - I am still on a low sodium diet and my blood pressure has dropped back down into the normal range as an added bonus) High sugars Processed food and junk food of all types (chips, cakes, ice cream, candy, etc.) Most dairy Processed meats (including bacon and sausage) Caffeine Alcohol Soda of all kinds including "diet soda" (what exactly is "diet soda" anyway?) Cut way down on wheat Cut way down on chemical consumption (read the labels) Nuts (especially peanuts) Citrus (I just felt bad after eating citrus) Peanut butter (I feel this helped a lot too)

Foods I included: Fresh vegetable juices every morning (with juicer). I believed this helped quite a bit. Vitamin B (I also believed this helped) Other vitamins Lipo-flavonoid Organic foods where possible (fruits, vegetables, chicken) Fish and quality fish oil supplements Lots and lots of water Healthful salads w/legumes

All in all, I am just doing what I believe I should have been doing for the past 10 years or more anyway. I've lost weight, I feel better in general and my symptoms have subsided - including the tinnitus which went from very, very loud to just kind of there). I hope to never go back to my old eating habits.

For me, I somehow believe it was the high sodium and lack of hydration that contributed to whatever inner ear disorder I have (plus a bronchial infection that may have migrated to my left ear 3 years ago). I read about the sodium/potassium balance in the inner ear, etc. and am aware of that at meal time.

I also added a series of stretching exercises (neck, shoulders, back, jaw, face, eyes, etc. which I do several times a day). I believe this helps a great deal!

Anyway, that's only part of my story but I believe changing my lifestyle helped me on the road to recovery and probably is helping in other ways that I'll never even know about.

I hope you and everyone else feels better!


Thanks BeatleMark! What a great help! I too, changed my diet about a year and a half ago and have had great improvement. Mostly I started cutting out MSG (which is very difficult to do, as its in most every processed food we eat). But to put it in a nutshell, I eat alot of fresh foods now, no more "stick in the microwave" meals, or fast food restaurants.

I can't say I'm 100%, but I can say its made a difference. I also have lost weight, and my blood pressure (which was borderline high) has dropped to normal range. My dizzy spells are very short now, and believe it or not, I can take Motrin (ibuprofen) when I get one and within one hour they are gone.

Thanks for sharing that, alot of people think I have gone a little "nuts" with the way I eat now, but all I can say to them is - "If you felt the way I did, and found that changing your diet helped, you'd do it too in a heartbeat."

Anyway, thank you. Like I said, I'm not completely 100%, so I can't totally push the diet thing to people, but I think its an important avenue for anyone on this board to explore.

Take care- Kim


Sorry - I forgot one thing -

Changing your diet may not be the answer for everyone, but if just one person is helped by any of this, then we've done good!!!!


Hello all, it's been awhile since i posted or even read up on this site. i finally started on an anti-depressant after 14 months of this crap. i was so scared to start on it as i was afraid it might make symptoms worse. so it's been about 3 months now and they have helped tremendously. the symptoms are a little milder but not completely gone. the best thing is that i don't obssess about this so much anymore. i thought about it when i woke up, thought about it before i went to bed, and if i was lucky to sleep at all, thought about it in the middle of the night as i lie awake in bed. It helped with my irrational thinking that, after months of having this, befell me. i was an emotional and mental mess but i held off on the anti depressants as long as i could. my counselor practically begged me to get on something (and her philosophy is no drugs) as she saw what was happening to me. So i finally did. i am taking celexa 10mg once a day. celexa acts only on seratonin and the side effects are low. i am not taking any other medication. a neurotologist awhile back wanted me to get on an anti depressant "just to see what symptoms we have left" but i never did. so anyway, i know a lot of you are dealing without meds and if you can do it that is great. celexa is working for me. it has evened me out and helped me not be as scared as i was. i still have symptoms daily that come and go. i am beginning to wonder if some of it has to do with hormones. i am 47 and when all this started in june of 2006, i all but lost my periods for 5 months. sometimes i think it was a complete hormone crash but i'll never know. i don't go to doctors anymore. nothing ever shows up on scans or tests so i am done. and i'm dealing with this-even thinking about going back to work (outside the home). i do believe changing your diet as beatlemark and others have done is the first thing everyone must do. as for the question regarding lipo-flavinoid, i've seen it advertized on tv and all it says is that it helps with tinnitus. i have tinnitus constantly since all this started but i have never tried the stuff. i actually don't concern myself with the ringing, it's the dizziness and fullness in throat that gets me among other symptoms. i did read an article about an association between bppv and birth control pills so maybe hormones in some cases can cause a lot of weird crap. get well. megan


Hello All - I haven't posted on this site for quite some time. I have now had Vestibular Neuronitis for 2 years and 4 months. Let me tell you how much I've improved since this all started. I thought this would never get better. Well it does. I can't say that I dizzy free, but many days go by that I rarly think about it. Before that was all I could think about because it's was controlling me. I still have my bad days here and there and yes I do get worse when I get sick, but by far I would say that I'm about 90 - 95% most days. I am now expecting and wasn't sure how this was going to effect my dizziness. I would say that it hasn't gotten any worse or better, so I guess that's good. I am 6 1/2 months, so not much more to go. Well I just wanted to post to let everyone know to NOT give up on feeling better. Yes, it may take awhile, but you will get better. Thanks Rich for keeping this site up and running. This site saved me so many times. Take are everyone and never give up.


Hi all, Just saw an ENT today, with a diaganosis of Labs after three months of symptoms. I had an attack three years ago that lasted about two weeks, then nothing more until three months ago. My symptoms have been as follows:

Started with ear fullness/pressure 24 hour bout of vertigo Mild to moderately severe tinnitus Dizzy Spells

Does this sound like anyone else's symptoms? The ENT told me that my Labs would go away on it's own, and I shouldn't take anything for it. I did a hearing test with no signs of hearing loss. The ENT did not order any other tests, so just wanted to confirm that my symptoms do fit the Labs diagnosis. Any suggestions/info would be most appreciated.

Thanks!!


Hi everyone,

Firstly must say this site has been a great comfort to me.

I first had labyrinthitis at the end of August and it truly is one of the most demorilising, horrid things I have ever experienced. Having just graduated from Uni, I was looking forward to starting my life properly but this has done nothing but set me back.

After about 4 weeks of not being able to do a lot, slowly the symptoms had been improving to the point that not every second thought in my mind was trying to figure out the best ways to move around to not trigger attacks and I really thought I was getting better, however a cold this week has bought the dizziness back. It's quite disheartning when friends and family don't seem particularly understanding to it so to read comments from people who have suffered similar experiences suddenly doesn't make me feel quite so lonely with this horrible thing. So I just wanted to say hello and thank you for easing my mind somewhat and to also wish everyone the best for a speedy recovery.

Cody x


Hi, here is my story. Not as bad as most of you, but still troubling! In mid-March I got quite sick, basically nauseous and dizzy. I thought I had food poisoning. Anyway that lasted for a couple of days, and then I was good to go back to work. But a few weeks later, I started feeling off-balance and slightly dizzy. Towards the middle of May I started feeling really dizzy all the time. Not spinning around dizzy, or light-headed, but I felt like I was floating around. Sort of like you feel after getting off of a boat. That is when I went to see a GP, who said it could be Labyrinthitis and sent me to an ENT. The ENT checked for sinus problems and checked my ears, and said everything looked OK. He sent me for a audiogram/balance tests. Unfortunately, that had to wait a couple of weeks since I was traveling on work to Europe. I was afraid that I would be stumbling around in a daze for the whole trip, but actually I felt OK for most of the time. I think (now) that this was because I was outside walking around a lot, rather than being inside typing on a computer all day, so my vestibular system was able to do some compensation. So I get back from my trip and go to the audiologist. They said my hearing was more or less normal, but that I had left-side vestibular weakness, as indicated by the caloric test. They said it could be labyrinthitis or it could be migraine related (which I get from time to time). Went back to the ENT. He didn't really have anything to add, just said it might be a virus (although he didn't even mention any names such as labyrinthitis or neuritis). He said it might be migraines, but he also said it might be Parkinsons! So he sent me to a Neurologist. Problem is you can't just drop in on neurologists, you have to wait a couple of months. In the meantime I took another trip (this time a vacation), all the time worrying about whether I had Parkinsons. During this time I was feeling a bit more dizzy, and also noticed a lot of tinnitus, in both ears. A high pitched whine, which only lasted for a few seconds at a time. Then I come back from vacation and go to the neuro. He checks me out, says I don't have Parkinsons, and wonders why the ENT would think so. Nor does he think it is migraines. He said I probably have a virus. He sent me for an MRI to rule out vestibular neuroma, which I am still waiting for. For the past couple of months I have been feeling not too bad. No real problems with balance. Lately however, with the colder weather I stay inside more, no more walking to work (half hour). So I think I am not compensating as much. I notice more problems with bouncy vision and nystagmus when I try to fixate, especially when I am sitting at the computer for long stretches. I need to get out more! The neuro prescribed some VRT for me, although the audiologist said I didn't need it since my balance was OK. But I am thinking it could help with my bouncy vision. Finally, I also get this annoying fullness in my left ear, sort of a plugged up feeling like when you have a cold. Also, there is a strange feeling as though I am hearing a very high frequency sound, which is so high that I can't really hear (if that makes sense) and which makes my ears tense up. Think of how your ears feel when you hear a dentists drill but without the sound, just the tense feeling. Thats how my ears feel a lot of the time. But other than that not too bad. I am wondering whether my experiences are similar to any of yours?


Hello Sky, Cody, and JJ. First sorry to hear you have to deal with this crap. Second the main problem is that every ones symptoms are very similiar yet slightly differnt. Mine did not really match with anyone elses. Could be anything from allergies food or otherwise. I reccomend trouble shouting and acupuncture for me was and is a big help for me. I have been fortunate to have good doctors one who actually suffers from the exact same symptoms as I do. If you do not at least have a sympathetic doctor find a specialist. Otherwise you are just going to be frustrated even more. To me it seems if they cant find a problem they assume its a virus. Do lots of homework and then run your questions by your doctor and this website. I have gotten a lot of help here. I found out on my own that 90% of my problem was my birth control. Other 10% seems to be allergies and pressure (weather)realted. Just remember your probably not crazy if your asking yourself if you are. This crap would drive any crazy.

Good luck, Rhonda


2 years 2 months and id say about 97%

still get off moments but they are much shorter and i can finally relax again. i will continue to get better and so will all of you!


Skye, Yes, what you describe are all symptoms of labs. Some people have less symptoms than you mention and others have more.

JJ, your symptoms are exactly like many people's who suffer from this disorder. Stress and anxiety can make the symptoms worse. I found that exercise helps especially if you can't get out during the winter. I would suggest joining a gym or taking Tai Chi or Yoga classes (both of these help with balance and help to relieve tension). Try to avoid overly salty foods, lots of sugar, caffeine and alcohol (all of these things can make dizziness worse). I can't believe your ENT told you it might be Parkinson's. First of all your symptoms aren't even close to that disease. Although dizziness CAN be a sign of a neurological disorder and it is a symptom of Parkinson's, MS and tons of other diseases, both neurological and otherwise, in the absence of any other neurological symptoms, the dizziness you experience is DEFINITELY NOT caused by Parkinsons. The fullness and tinnitus you experience in your ears should be evidence that it is indeed a vestibular disorder or related in some way to the middle ear. There was NO reason your doctor should have gotten you worried like this. It probably caused some of the symptoms you felt on vacation because you were so understandably stressed about your doctor's possible "diagnosis"! Secondly a good doctor NEVER tells the patient worst case scenario unless there is enough clinical evidence to support that conclusion. What surprises me is that an ENT (who is NOT a specialist in this area) can make this assumption (even tenuously) without at least giving you a Parkinson's evaluation (which he wouldn't be trained to do anyway). Not cool! My advice to you is to find another doctor who actually knows what they are doing!!!

In the meantime, rest assured that there are others with your symptoms and we all feel your pain!!! I know it doesn't help the way you feel physically but at least you have someone to talk to and relate to about what you are experiencing.


Hi all,

Seems very quiet on this messageboard at the moment. Where is everyone?

I've just passed the three year mark from when I first started having dizziness after an upper respiratory tract infection. I still have 'horrible' moments but have got to a good recovery level. I have even gone a couple of months with no symptoms at all over the three year period, though unfortunately they do keep coming back!

Can I just remind you all to be positive, as Chris says, you will get better. Take more care of yourself, eat healthily and keep very active. This is what has helped me a great deal. I'm not a one for exercise but have walked and walked and walked some more! This keeps the head moving and helps the brain to compensate.

Anna, where are you. Are you well at the moment?

Rhonda you are right about the allergies. I didn't have any before I got VN but now I have a constant runny nose and stinging eyes. And talking about weather related, If I come from cold into warmth my balance goes and also coming out of the wind into calm sends me spinning.

Lots of things still make me feel weird even after three years but I like to think I am coping with them better now and am not so afraid as in the early days.

Take care everyone

Sandie


Hi, Sandie and everyone

I am doing better on the 4 year mark of returning of my ugly enemy (Mr. Dizzy)who has been with me on and off for 35 years (grrrr!) out of my 55. I think, that I am coping well, though my moods swing up and down following exactly the same pattern as dizzyness/imbalance. Those who are the closest to me (my mother and my husband) say, that sometimes I cannot hide my bitterness and my anger... My husband says that I am NOT optimistic and if he were me.... bla-bla-bla.... he would be MORE optimistic. I just snap back: NO IFS, you DO NOT HAVE RIGHT to preach me how I should feel!!! Sometimes I feel so tired, that I do not have any strength even to talk back...

I still wear Bose noice-cancelling earphones and noisy places like Wal-Mart are killers. I can drive short distances in the town. I walk, walk and walk (you are right, Sandie!). I eat well, with no salt and plenty of vegetables and fruits. I appeared at my job place several times, but I felt nauseated and dizzy because of very different noises of machinery, computers, transformers etc. (engineer and researcher). I could not concentrate on what my former co-workers tried to say to me (they were glad to see me, they are really good people). They concluded that I look better, than half a year ago. For some reason I was sad, I almost cried after those visits as it was obvious to everyone, that I am not ready to return..... Overall, I improved to such a dergee, that we are planning to go (fly!) visit our daughter and her family in Boston around Christmas and new Year vacation!

Life is going on and I am not hiding from this big, interesting and .... HORRIBLY LOUD world.

Thank you everybody for being together on this page (when I support YOU - I feel better). Post you updates, friends. (Rich Baker, page owner, thanks!)

Keep going, WE SHALL OVERCOME.

Anna from Oklahoma


Hi Anna

Lovely to hear from you and so glad that you are a little better.

You are so right in saying that this world is so NOISY.

The supermarket where I shop is owned by WalMart (ASDA) and it is getting noisier every time I visit. What with the tannoys going constantly it is so irritating. They have started this new radio show and it is constantly booming out loud music and boring DJs. I have complained a couple of times to the checkout staff and even they agree with me that they can't stand it. So why do they do it? What about all the old people, people with ailments, ear problems etc who just do not want to hear this rubbish churned out 24 hours a day? God, it drives me so mad.

Hey, Anna, we must be married to the same type of man. My husband, though he has looked after me and supported me for three years through this illness now, does say the same thing now and again. 'If I was you, I would do this and that", would they though? I don't think so. They don't really have a clue what it is like being us, do they. I am lucky in that I work in a quiet garden centre, but I know exactly what you mean about the noise. I really do like my own company and a quiet life now. Saying that, I do get on with my life and do not hide away, I still go into town and shop and my life is back on keel to a huge degree. My youngest daughter is only 10 years old and I make the effort for her. I do not want her to miss out on her childhood and I take her lots of places. She is the one that spurs me on, otherwise I might just give up! I am not fully recovered but I try to ignore it now.

I am so proud of you going to see your daughter, you are so brave! After all that you have been through, and you have been through more than most of us here, it is nice to see you are living a little again!

Good Luck!

Sandie x


hello everyone i have been on this site back on like page 2,3, 4...along time ago....i have had viral labs for almost 3 years now...the 1st few weeks were terrible now im just left with a strange feeling in my head and surreal feeling with my eyesite......i can run too much or drink too much anymore but other than that im about 90 percent....i really dont know if its ever gonna go away but u start to live with it.....


I am so thankful to have found this sight. I have been dealing with the vertigo, dizziness, ear pressure and nausea for about 6 weeks now. I have been to my GP which diagnosed BPPV - and I didn't feel confident with that diagnosis. Next the ER because I thought I was having a heart attack - rapid heart beat, sweating, extreme panic and vertigo. Diagnosis - vertigo (gotta love ERs) Then to the neurologist, who after an EEG, VNG, CAT Scan and MRI decided that it is either labs or Meneires. I only showed a right side vestibular weakness on my caloric tests, although the pressure is in both ears. Is that normal? I have been working from home since this started, but an returning to work Monday. I have found that complete caffeine avoidance and drinking nothing by purified water has helped a great deal. Definitely not 100%, but I don't feel like I'm going to die today...so that is a good thing. Any advice since this is so new to me and I feel like you on the board have a greater liklihood of helping me than any doctor!


I am so glad to have found this site! I was diagnosed with Labs and sinusitis as well as ET Dysfunction 9 weeks ago. I had the light headedness for the first week but thankfully it wasnt sickening, just made me feel like I was drunk all the time. The symtpoms I have now are ear fullness and this weird buzzing in my head (not my ears). Wondering if anyone has that as well? It seems to only happen when I am laying down in bed? I also think it might be related to certain noises as well. I am delighted to have found you folks, it makes me feel not so alone. I was off work the first 4 weeks and now only able to manage workign 4-5 hours each day. I feel wipped and tired all the time.


Hi Cora,

You have been so lucky to get all those tests done so quickly. We have nothing like that in the UK, it took me about 6 months to get an appointment with the ENT and then they did nothing apart from a few really basis tests, no MRI or anything like that. Which to us can be very worrying because you always think there is something much worse going on inside your head and it would have been nice to rule that out early on. Anyway I am still here, so that's good! Also getting back to work after 6 weeks is really good. I was off work for 6 months initially and lots of people on here can't work at all. So hopefully you will recover completely in a short period of time. Good luck!!

DM, you too are lucky to still be able to work with this thing. Yes, I have weird feelings in my head all the time, though it was not one of my earlier symptoms. Ear fullness is part of it, you always feel like you want to 'pop' them. And, yes I definitely have a huge intolerance to noise. This does not effect me all the time, but if I am having a bad day, certain noises send me spinning.

Chad, glad to see you are much improved. I remember your posts three years ago, you were always experimenting to see how much alcohol you could get away with!! Anyway you are so right, I am at three years too with this illness and you do learn to live with it. It doesn't bother me too much now and I would say I have more good times than bad now. Hopefully one day it will go for good!

Take care

Sandie x


Has anyone had an ENT see fluid behind the ear drum with Labs or that the drum itself looks retracted? I am starting to think my whole problem might be ET dysfunction and not Labs at all. I did some research on ET Dysfunction and many medical sites state that, if it is persistent, it can lead to dizzyness or light headedness. Finally, (last question I promise) is lingering Labs always accompanied by dizziness? I am into my 8th week and dont have any dizziness at all (havent had that for about 5 weeks), just the popping of the ears, feelings of fluid which seem to go away momentarily when I do the Valsalva maneauver. My dizziness felt like being drunk (without the fun!) and lasted for the first week or so and then went away. Wonder if this is indeed ET dysfunction and I am misdiagnosed with Labs since the dizziness/lightheadedness hasnt been there for so long. Much thanks for any thoughts on this, a great place to come for answers when the ENT specialists seem to have none.


Dm,

Maybe you never really had labs.... An ear infection can cause dizziness.... ad it also leads to effusion. Youw ill get fluid stuck behind the drum which can take soem time to clear up.. Remember you can have labs and also have effusion at the same time....

Nasal Steroids usually help this as they reduce inflammation leading to the eustacion. he valsalva should be done 5-6 times a day to help the fluid drain.


Hi all, Thanks for the great info. I'm into week 11 of this. I had an MRI, caloric test, and hearing test, all of which came back completely normal. My ENT originally diagnosed me with Labs, but said we'll have to "wait and see" if anything else happens. My guess is he's waiting to see if I have another vertigo attack, which might signal Meniere's, instead of Labs. So far, I haven't had any additional vertigo attacks since August. My tinnitus and dizziness had actually improved to the point that I didn't notice them for about two weeks. Unfortunately, both came back with a vengence this week.

My question for everyone is...can anyone recommend something to do/take for the dizziness? I've read about Vertigoheel, Equitab, etc. Are there any other natural remedies or foods that help with this? My job requires me to be at a computer for 8-9 hours a day. I do not want to lose my job over my dizzy spells.

Thanks everyone. Although I'm the only person I know going through this, boards like these help me to feel less alone.


Skye- Here's something very simple to try. Take two over the counter Ibuprofen (Motrin IB). It sounds crazy, but it works for me. It took me about 9 -10 months to figure that one out because I wasn't in pain, just dizzy. Anyway if it works you should explore the possibility of migraines.


Skye,

The best thing for you to do is to take nothing, however if the anxiety is getting you down or you are in the middle of a bad patch, you could try some Valium to take the edge off.

I do not recommend this, the fact that you had a 2 week good period is great news.. That should just extend... This illness waxes and wanes... you'll notice you feel better only to feel worse the next day or week etc... But slowly these good periods last longer etc... taking something to combat the dizzies will only make it take longer. The fact that you sit in front of a computer all day may be easier than doing other things.... try and take frequent walks throughout the day... I too am in front of a computer for 9 hours a day.. I take 15 minute walks every 2 hours.

Sam


Are the symptoms of labs similar to that of a chronic sinus infection that has caused ET dysfunction? Thanks


Amber and Sam, Just wanted to thank you both for your suggestions. I really appreciate it. Yesterday was my birthday, and my friends are throwing me a big party tonight. Needless to say, I'm a bit nervous that I might get dizzy. Gonna try to push through, though.

My ENT also thinks that I should try to not take anything for the dizziness, as my body is trying to realign itself and "compensate." I'm going to do my best to try to use fresh air as my remedy, or also try ibuprofen.

Here's hoping for a better week next week!

Thanks all! Take care...


DM,

I am noyt really sure of the symptoms of a chronic sinus infection :). The dizziness with Inner ear problems can mimic alot of other illnesses.... pressure in the head is thte one that coes to mind when I think of Sinus Infection and that is definately present in different people. Usually iner ear is undetectable so if someone is finding that you have a Chronic Sinus issue, I would try and treat that first and hope that it resolves.


Skye,

You'll have to try and get past the dizzies, and the Anxiety to get out and do things... Just try and do the best you can.. try and get on teh treadmill slowly...... That in itself is help.. Just dont overdo it.. Work everything up slowly as doing too much can always set off some dizzies... Its easier to just take it gradually and not upset the process.


Hello Skye - The other thing that worked for me is meclazine,also Lipo-Flavonoids seem to help as well they were approoved by my allergist. Happy Birthday belated hope everything goes well and you have a fun party. Hopefully you did not drink cause that will be a bad setback. Also dont forget the migranes can also be a symptom not a cause. But you should still look into the possiblity. Maybe also look to see if your neck is out of alignment that also could cause migranes and dizziness. Take Care, Rhonda


Hi all, Rhonda-Thanks for the birthday well-wishes. The party was a big success, and, surprisingly, I did not have one dizzy spell! Not sure if it was mind over matter, but I had a fantastic night!

I'm still pushing through..trying to do a bit more each day. I'm working out, eating well, and getting outside and trying to enjoy life.

I definitely get a lot of pain in my neck by the end of the day, so I do think that I may need to go to a chiropractor for some realignment. Hopefully this will help with the headaches and dizziness.

I also have a friend who has offered to do cranial/sacral work on me. Has anyone tried this method with any success?

Thanks again all. Hope everyone is feeling better!


Hi folks Just wondering if anyone else has a sensitivty to noise that DOESNT cause dizziness but almost provokes a very low tone tinnitus or wierd feeling in the ear? This seems to happen when I am exposed to several people talking at once (meetings) or being at restaurants, etc. It is often followed by a feeling of fullness in the ear but NEVER dizziness. Replies greatly appreciated.


Hi, My doctor thinks I may have labyrinthitis, and I'd like to hear if my symptoms sound similar to any of yours. From what I've read on medical websites, it seems like I don't have a standard case of it, if I do have it. Thanks a lot, in advance. ....

Symptoms: constant dizziness/imbalance (not vertigo), very mild tinnitus in my left ear (I can only hear it if I'm in dead silence, and even then I have to listen for it), weird head & body pains (mostly on the left side of my body), weird twitches (mostly my left eye -- no nystagmus), neck pain (under jaw and along arteries: it feels like I'm being slightly choked ... also: pain at the base of the skull at back of neck), numbness in my left thumb, weakness/fatigue in my limbs (my torso isn't affected), general fatigue after very mild exertion, and "electric" sensations whenever I'm surprised (e.g. by a loud noise, etc.)

My symptoms started four weeks ago and have steadily become worse since the initial onset, with the exception of one 3 or 4 day period in which they leveled off. I didn't have a flu or cold beforehand and my head position has no effect on dizziness. (I tested this by shaking my head back and forth with no effect.) I had mild nausea once, but that was it. No vomiting. The actual onset itself wasn't very sudden: it was like getting the flu.

Of course, I'm seeing a doctor and will find out what I have, but I just want to see if my symptoms and the course of the disease so far are similar to what you've come across ...

Thanks, Phillip


Hi, Sam, Sandie, Rhonda - "oldies" people here! How great, that you, guys appear regularly to help those who have not recovered yet.

Hi, newcomers - sorry for you dealing with The Beast

I am still out of work. It is my fifths year with IT (just the current bout...). Sounds wierd, but you CAN and you SHOULD live with IT. During those years I have learned not only to cope, but I have learned to enjoy life again. I am still learning! There were times in the past, when I thought, that my life is meaningless, pittiful

But look, my friends! I am doing a little bit better again.... as compared to the same time just a year ago. I can work on computer much longer, I walk more straight and I dare to drive alone short distances!!! I even can go holiday shopping for a short period although I do feel bad in such a horrible places as Wal Mart Supercenter. I am still afraid not to fall (in fact, I never did!) but to look drunk, or wierd, or strange in public. And I have to admit, that sometimes I do think: "Oh, what if my very handsome husband feels ashamed of how I move or how I talk to people, looking down on the floor?" Mostly, my pure imagination, but I doo feel insecure sometimes.

Otherwise, I am doing fine, and we are flying to the East Coast (USA) to visit our children and our grandson during Holiday Season! It will be my first airplane flight since the very horrible one in March, 2004. I felt even more sick after that flight.

I am going to be out of this page till my reaturn in January. I will let you all know how it was.

Bye for now. I wish you all very best! I love you all and I RESPECT you, guys.

Anna from OK


Hi Anna

Hopefully you will pick this up before you go and visit your family.

I wish you all the very best for christmas and hope sincerely that 2008 is so much better for you.

You have fought this illness for so long and I do feel for you. And, hey, you give more advice to people on this site than anyone I know! You are an angel and I know you have helped many people (me included}.

Hve fun, relax, and enjoy yourself, we love you too xx

Phillip - my symptoms have been similar to yours in some ways. I contacted VN after an upper respiratory tract infection, but I never had spinning vertigo where I was totally incapacitated. I had dizziness and imbalance 24/7 which is very hard to deal with. I also have had for the last three years very mild tinnitis, like you which is only noticable when everything is quiet and it does not bother me. It has never gotten worse over that time. The feeling that you are being slightly choked is possibly to do with anxiety. I felt like that for a few months in the early days, often feeling like I couldn't swallow. This is part of the illness as well, so try not to worry too much about that. The fatigue comes from the brain trying to keep you balanced as it is receiving all these dodgy signals from your ears and has to work a lot harder! Not so sure about your other symptoms but lots of people suffer in different ways and I myself would have many differnet symptoms at different times, i.e. head pressure and weird feelings. I also had mild nausea, with no vomiting, and the onset of all this for me wasn't very sudden. It came on over a few months where I had mild dizziness and it got worse and worse until I couldn't actually go to work.

Try and keep active and try not to be too frightened of what is happening.

DM - I don't get tinnitis or weird feelings in my ear with noise but I do get a full return of dizziness/imbalance if I am in noisy, overcrowded places.

Hope this helps.

Sandie x


hello Philip I am sorry to hear you have to deal with this. For me I do get the occasional left had numbness not a big deal but it seems to be when my neck is soar sometimes the mucsles in the left hand or fingures get effected seems to be the same muscle group. You learn what muscles are connected when they are not working correctly. Sore jaws and neck are also interrealed.

Anna Hope you get to enjoy your trip, it always helps to get away have a great christmas, your advice has always been helpful!

Skye Glad to hear your doing much better, and no reprocussions from your party. Havent heard from Meagan in a while, how are you doing?

Hope every one has a good holiday


Thanks Sandi and everyone else who attempted to answer my questions. Seems like my ENT might have me misdiagnosed. I am thinking this is ET dysfunction since I have had balance issues other than the first week and they were vertigo, just feeling light headed which might have been due to a raging sinus infection that I had. My only symtpoms are ear related (fullness, fluid (noted by the ENT), low roaring tinnitus, and sensitive ears to noise (doesnt make me dizzy). Thanks again,


Hi all- I don't want to over-monopolize this board or anyone's time...but it is really nice to talk to people who understand what I'm going through.

I have no more ear pressure, (just an occasional tingling sensation around my face and ear) and my tinnitus is actually quite faint-my main complaint is the bouts of dizziness/imbalance that happen to me, mainly while in crowded places.

Just curious to see if anyone has come across any excerises, supplements, or alternative therapies that have provided relief of their symptoms.

Although I am trying to learn to "live with this," I am a very proactive person, and am always searching for things that might help me feel better.

Thanks to everyone for listening, and any advice that is offered. As much as I hate going through this, it breaks my heart that others are suffering as well.

PS-Anna, not sure if you've tried "Ear Planes" yet or not, but they really did help me on a recent flight across country. They kept the pressure out of my ears, which kept me from getting sick. You can pick them up at most pharmacies/drug stores.

Take care all... Skye


Skye - thank you for the advice. I have purchsed EarPlanes today. Put them right into travel bag. Getting ready!!!


I would be highly cautious of the Ear Planes. I wore them back in September and my ENT thinks this is what caused my ET dysfunction! They seemed to work well on the flight but the day after, I was misserable. Dizzy, ears wouldnt pop at all. So, beware.


Hello Dm yes to all of your comments, very annoying, Skye I always love to read your comments never think you overmonipolizing (is that a word) I think I may have found two more things that have helped tremendously besides the acupuncture, Acetyl L-Carnitine seemed to get rid of that floaty feeling.I also take Lipo Flavonoids. Also Seems to help. This one you have to be careful with. Believe it or not a little (Very little) caffine seems to help instantly. I got that suggestion from my Doctor(acupuncturist) 2 ounces or so of Coke with lemon and it really helped. of course if you drink a huge amount of caffine on a regular basis that can also be a cause of vertigo along with the aspertine in diet soda. So I am trying around 2 ounces every other day or so of coffee. Since I have not had soda on a regular basis for 2 years. I am being careful not to get iddicted to caffine again. Seems to make a huge differnce. Hope this helps. Sam also what is effusion? thanks Rhonda


Skye,

Regarding the neck pain.. I used to get Stiff stiff necks... Was really hard to move it and painful.. This is all part of labs... I dont think a chiropractor is going to help, but you can try.. Just make sure he doesnt screw something else up.


DM,

I used to get hypercusis (sound sensitivity). It drove m crazy.. used to set off major anxiety!!!


Hello Sam and Rhonda, Thanks for the advice. Yes, my neck pain can be excrutiating. By the end of the day, my neck is usually so stiff that it's hard to move. At least I do know now that this is all part of Labs.

It's strange that EarPlanes can work so well for some, and not so well with others. I guess that's how everything is in life. They definitely helped me, and on that trip, I felt better than I have in months. Too bad they didn't help DM. I guess there is no way of knowing. My ENT recommends them, though, and several of his patients have used them with great success.

Anyway, I'm still pushing through, like the rest of you. Trying to stay positive and not lose hope. Heading to New York this weekend for work, and praying that all goes well.

Hope everyone here has a nice, dizzy-free holiday!! Thanks again to everyone for their kindness and support.


DM - Thanks for the advice to be careful about waring EarPlanes. I will be very-very cautious.

My husband said, he is a physicist,that you should equilize pressure between your ears and the plane cabin. These EarPlanes are BAD IDEA he said. You better swallow as much as possible(drink or suck candies) while taking of and decending - he said. This sound as good explanation to me.


The earplanes didnt work for me, in fact made things worse. However, they may indeed work for others. My ENT thinks that it actually prevented my ET's from being able to equalize the pressure and hence the subsequent dysfunction. Coupled with the bad sinus infection I had it wasnt a good experience. However, if your sinuses are clear you may not have anything to worry about at all. Best of luck using them, I hope they work for you. DM


hey all, very long time since last post. Philip, you are the first person on this site that can exactly describe a very disturbing symptom that i have along with all the ear and dizziness stuff. and that is that weird, full feeling under my left jaw in the area of the arteries. when it is bad, i feel the sensation of choking and then at times it is mild and i don't notice it so much. but that symptom has been a constant since all this started and it is the one i hate most of all. been to 13 doctors and none of them ever mentioned migraine. there is such thing as a carotid migraine. i used to think a migraine was a headache and it is not. it is a vasospasm of an artery. it opens and narrows causing all sorts of weird disturbing symptoms. the headache is just one of them and sometimes you don't even have to have a headache during the migraine. you can get migraines anywhere including the neck. do any of you out there have any experience with migraine disease? i am beginning to wonder about this. megan


Hi All, I really hope that everyone is doing well. I have been doing pretty bad the past few days. I decided to forego the Ear Planes and head off to New York. Not sure if it was the flight, or just the stress of the trip, but I was miserable all weekend. I felt dizzy every time that I was inside a building, but not laying down. The only times that I felt ok were laying down or being outside. I barely made it onto the flight home on Sunday. I spent all of yesterday in bed, and am just returning to work today, still feeling uneasy and a bit dizzy. This is such a frustrating illness. Every time I think I'm on the mend, I get knocked back down on my rear.

I was wondering if anyone reading this has, or knows someone who has fully recovered from this illness 100%? It would be great to hear a positive story. Sometimes I get so down I feel like I can't carry on.

Thanks for listening.


Hello Skye I am not quite 100%, but am getting there. If you don't drink caffeine on a regular basis. you might want to try a quarter cup of coffee or coke. I really helped me instantaneously. I went from feeling like crap 24/7 to being able to fly again almost full time. (just general aviation) I have gone almost 2 months with out any symptoms. Felt a little crappy today, but my down time is minutes compared to how it used to be and recovery is hours instead of days. That in itself is a huge difference. Sometimes I wonder if I get so stressed about having a relapse that I give myself one. Don't worry you will eventually feel better. Just have to find the recipe that works for you. Rhonda


Hi all, Just thought I might update you on my own little dizzy life.

I have been thinking very hard over the last few months and I have decided to try a claim against my local ent department.

I had a radical mastoid operation for a cholesteatoma in 1996 and was told that I had a small throat and getting the pipe down for the anesthetists, but no problem as long as they knew 1 in 1000 are like that, the second anesthetist came in later and told me the same thing!

Anyway I came round after the op vomiting blood! so much for their reassurance, Then while I was in the recovery room, I managed to pull all of the dressing out of my ear and also a tube from my leg, which I didn't even know was there.

after my recovery from the op I had, and still have, a severe pain in my ear when I sneeze or blow my nose.

Then in 2004 came the lovely labs! four times in one year, visited the ent at least 18 times in three years, they have suggested menieres, migraine, eustacian tube disfunction, reflux and anything else they can think of, including lots of tests and scans.

The last visit I saw a professor who said I had beaten the panel and there was nothing else they could do for me as they think I have damage to the nerves in my ear!

I believe that my ear was damaged from the operation, the anesthetists, or my pulling out the packing in my ear when someone was supposed to be watching me in recovery, then the labs came while my ear was weak and finally did the damage I am left with.

During the visits to the hospital everyone listened but no one HEARD me as I tried to explain about the problems after the operation, they all had their own ideas, none of which answer any of my problems at all.

So next year I will get some legal addvice and see what happens.

In the meantime may I wish all of you a very happy holiday and an even more happy new year.

Mick.


hello again all, skye, i know you're sad and down. I know we can all relate. but just saying that doesn't necessarily make you feel better. you will make it through because you are doing it every day. i don't think anyone on this site has given in to whatever this is. i am going to find a migraine disease specialist in '08 as the more i read about it and the symptoms that can be associated with it, the more i think that could be my problem. just the fact that i start to feel better too and then wham-it hits me again. this seems to be common for a lot of the people on this site. for what it's worth, try avoiding migraine food triggers and see if your symptoms lessen at all. i'm not saying you have migraine but what the heck. after mine started back in june of '06 i decided to give up coffee. after i did that, the vice feeling in my left ear, jaw, head, and neck went away. i have never gotten it nearly as bad as i did when i drank coffee. so now i drink decaf. i had to give up alcohol too. i had a beer last night for the first time in months. today i have what i guess is a migraine: left sided headache, mild dizziness, spacey feeling in head, some nausea. beer and wine are migraine triggers. i have never had migraines before the day all of this started so that's why i never considered it. i just never knew much about them. just try avoiding certain foods and see what happens. i hope all of you have a merry christmas and any other happy holiday you wish to celebrate. megan


Hi everyone,

I hope some of you can give me advice, I've been told I have viral labyrinthitis, and I've had it for about eight weeks now. I feel very sick, with pressure/dull ache at the base of my head, stiff neck, dizzy/imbalanced and sometimes I even feel like I'm going to pass out. This is one of the most horrible things I have ever experienced, I feel so low..

I don't think I can cope anymore, I can't stop crying..I keep thinking there is something horribly wrong with me. My doctor has given me stemitil to help with the sickness, and now he's also given me beta blockers because he says I'm anxious.

I have been in bed for most of the last eight weeks, and just when I feel I might be a little better, my symptoms come back with a vengance. I have an eight month old baby, who is quite a handfull. Luckily my family have helped me look after him thus far, but I don't think anyone understands, they keep telling me I have to deal with it!

I'm fed up feeling like this...


I started posting here in November following what I thought was labs, diagnosed by my family Doc. An ENT has confirmed ET Dysfuntion and chronic sinusitis as my primary problems and I must say that this past 2 weeks things have improved significantly. It was so nice and comforting hearing all your stories and it brought me some relief when I needed it. I am sorry to hear that some of you are still adversely affected with inner ear problems. From my earliest symptoms to this period of recovery was 12 weeks and it was purely awful. I empathize with each of you that has had months and years of this dreadful problem. I wish each of you health and happiness for the new year and will say a prayer in hopes you feel better real soon. DM


megan,

Just wanted to chime in on that pressurey sensation you get.. I know alot of people that complain about pressure in some sort or another... For me it extends from the back of my head all the way into my neck.. I know others feel it in their cheeks, or foreheads, or behind the nose.... Everyone is different.

That bbeing the case, there are many who suffer from MAV Migraine Associated Vertigo (with or without the spin). Check thedizzylounge.com or Healthboards to find out more about it.. there are some very informed people there.

Sam


Hey all,

I am currently feeling teh brunkt of a cold I had about 1 month ago.. This latest blip seems to be eating me for breakfast lunch and dinner. I am losing it.. Ugh!!! What a monster this is/.. I am exhausted dizzy, eyes hurt, pressurey.. Man this is miserable.. Sometimes you gforget what a beast this is when it goes...

Sam


Hi All, Just wanted to send a quick thank you to all of you who have provided me support and encouragement and kindness when I needed it most. Thank you thank you!

The past four months have been pretty much awful. Through it all I've continued working full time. I'm starting to consider the idea of taking time off in '08 if I don't get this thing handled soon. I finally explained to my coworkers and boss about what exactly is going on with me, and they were all very supportive and encouraging. Thank goodness.

Just wanted to let everyone know that this week has been much better than the past couple of weeks. So far, I've only had one mild dizzy spell, which is huge for me. I did start taking Ginko this week...not sure if that is why I'm feeling better, or if this illness is finally starting to wane. Either way, it's nice to have a few dizzy free days, especially at this time of year.

I'm going to see an Upper Cervical Chiropractor on Monday. I'm starting to feel that Labs may be a result of head trauma. So many people complain of sore, stiff necks, and even TMJ, which can be caused by head trauma as well. I read about a Chiro in Boulder and one in Minnesota that did studies on patients with Meniere's and Labs. Nearly all of the people they studied had had a prior head injury in some form. They did some adjustments to the first vertabrae, the atlas, and all felt relief from their symptoms. Some had total relief, some had a great deal of relief. I'm willing to take any form of relief that i can get at this point. I have no idea if this will work for me, but I will keep you all posted on my experiment.

Anyway, hope everyone is feeling better. Thanks again for listening.

Skye


Megan -

I was diagnosed with Migraines about 8 months into all of this. (I do not get headaches). I was originally diagnosed with Labs, but I'm not so sure now thats what it was. I have had alot of improvement with Migraine treatment (mostly diet and beta blockers) I'm not saying its everyones solution, but it is a possibility. Please check out : http://www.mvertigo.org/

Its a great sight, with alot of invaluable information.


Hi All,

Happy New Year everybody, and I hope 2008 is going to be so much better for you all.

Marita, you must start to try and challenge this dizziness and try to stop worrying so much. I, and all of us here, have been exactly where you are now. I am guessing you are from the UK as I had stemetil too.

I feel so sorry for you with a little baby to care for. And, I know what you mean when you say that nobody understands. But, when you think, it must be so hard for people to understand what it is like because we usually look so normal! I had one close friend tell me it was nothing to do with my ears and was just panic attacks, even though I have never suffered from a panic attack! I sharp put her straight!

Anyway, as I said you must try and challenge your dizziness. Hopefully, you will be one of the lucky ones that gets over this thing in a couple of months and it never comes back. Try and get someone to take you for a walk outdoors, even if you have to hang onto them. You will feel so much better and proud of yourself. That will be your first step to recovery. You must try and be active because if you are lying in bed all the time you are not challenging your brain and helping it to compensate. In labyrinthitis your brain is receiving the wrong messages from your damaged ear and that is why you feel dizzy and off balance. You must bring on the dizziness to get your brain to compensate. In a sense it is like being a toddler learning to walk, your brain is having to learn again how to keep you balanced.

We all go through the feeling that there is something dreadfully wrong with us but what we have is not actually life threatening so we have to be thankful for small mercies even though it can be very tough at times living with it.

Saying all that at three years now I am still not recovered and having a little relapse at the moment as my ears are blocked. But I have managed to get to a level where for most of the time I just cope with it. Mind you, you really have no choice, but I try not to let it get me down too much!

Take care

Sandie x


I've been to the dizzy lounge website, sam, and i agree that i now do have mav-migraine associated vertigo. whatever happened to me gave me the migraines. i never in my life had them before so i never thought it could be migraine. there is no history of it in my family either. i have read that migraine is associated with bppv which i have had off and on in both ears. hormone shifts can cause migraine too. do you think you have mav too?

marita, hang in there. regarding your anxiety, it is very much a part of this illness/ disorder whatever it is. it should fade over time. i had it so bad that i couldn't eat and i cried all of the time. i now have none but still live with weird symptoms. there are other anti-anxiety meds besides beta blockers. beta blockers are usually given to people with high blood pressure and/or heart problems/disease. yes, they are sometimes given for anxiety but there may be others (benzos) that work better. after 14 months of feeling totally miserable and feeling like i could not go on, i started an antidepressant-celexa 10mg. even though i still have all the weird symptoms that come and go, i can deal with it all. i became very sick mentally and i became so depressed because of this thinking i am just going to have to feel this way forever. the anti-depressants made all the difference in the world. they took away so much of the anxiety associated with the depression. let your family help you as much as they can. try getting up and moving around even if you don't feel good. avoid the bed if possible. if you don't agree with your doctor, go to another one. maybe a brain scan would make you feel better to make sure nothing is seriously wrong. it's so tough when no one seems to understand how all this feels-especially family and doctors. megan


marita and others, just a quick addendum to my last note. just know that i am not a medicine pusher by any means. that's why it took me so long before i got on the celexa. i was trying to deal with this without meds as long as i could. everyone on this site deals with this their own ways including the use of meds. as for me, i wish i would have started on the celexa months sooner. the benzos do relieve a lot or all of the anxiety but they do slow down compensation and they are addictive. just don't sit around and suffer. if you need meds for relief, then talk to your doctor and take them for awhile. that's why they're out there. megan


Hi all, So, my neck x-rays showed that my atlas bone is sitting very crooked on my spine, as opposed to parallel. The chiro performed one adjustment. That was on Monday, and I haven't had a dizzy spell since. Might just be a coincidence, but I do feel really good. The neck pain has eased, and no dizziness this week. Going back today to talk with her about a diet and supplement plan. She is more than just a chiro...she also practices holistic health and nutrition. Will keep everyone updated on how this process goes for me.

Sam-How are you feeling now? Any improvement? So sorry to hear you had another blip. You have always been a great source of encouragement for me.

Marita-Hang in there! Don't give up! We have all felt what you are feeling. This illness is heartbreaking, scary, miserable..... but it does get better. You will one day (hopefully very soon) have days where you don't even notice the illness, until it finally goes away on it's own. I've found that the best thing for me to do is to stay proactive. I still go to work every day, try to do small work outs each week, try to challenge my brain in different ways all the time. I also watch what I eat and drink and try to take supplements that help me, like Ginko. I avoid taking meclezine, as it only made me feel worse when it wore off. This week I was able to take my nephews sledding, which was a huge accomplishment for me. I also went to a movie last night, and didn't have a panic attack, which was great! In the beginning, I took small steps. Went for light walks, ran very small errands. Each week, I'm able to do more and more. I've also tried to change my way of thinking. I used to wake up every day thinking, "Oh great. Another day with this crap!" But now, I try to wake up each day and say, "I got through another day, which means I'm one day closer to the end of all of this." I still have my bad days, of course, but I'm really trying to stay positive and do everything I can to beat this thing. You can and WILL beat this thing too! Definitely follow Megan's advice also. If you are struggling with your depression, get help! There are doctors out there who are willing and able to help you feel better. It may just take finding the right one.

Take care all. Hope everyone is feeling better today. And I hope this New Year brings good health for all of us!

Skye


Hi Everyone, Happy New Year.

To Sandie, Megan and Skye. THANK YOU so much for your kind words and support. It means a lot, thank you. I can’t possibly explain how much you’ve helped me.

I have taken your advice to be more active and fight this thing, and, it seems to be helping. For the past few days I've been pushing myself to get up and get out. The mornings are the worst but I've noticed that after an hour or so of being upright, the dizziness and nausea seem to put itself in check. The shakiness/tremors and tiredness, with the occasional dizzy spell remains however, but hopefully if I keep getting up and moving around that will come right as well. I found that in my case the medication that the doctor gave me (stemitil, beta blockers) didn’t help my symptoms, only added more unwanted side effects, so I've stopped taking them for now.

I realize now that there is no pill that will give me an instant fix, (although, someone should get to work on making one. Pronto! lol.) I’m also feeling more confident that I’m not going to keel over and die! (thankyou again!) As you can imagine this helps alleviate the anxiety a great deal! Don’t get me wrong, I am still having extreme lows – but I’m learning to manage them more effectively.

Skye – I’m so happy you’re feeling a bit better. I hope it stays that way. Are you still taking Ginko? I think I might give it a try.

I will keep you all posted on my progress.

Marita.


Thank goodness I stumbled across this site! It has made me feel so much better about my diagnosis. I can hardly wait to send this link to members of my family that think maybe my Doctor is missing something. I'm in week 4 of this brutal disease. I was completely out of commission most of last month, but I've started out 2008 with the dizzy/lightheaded spells getting further and farther between. I'm so sorry that there are so many people out there that are suffering from this, but it has been comforting knowing that I'm not crazy. I have an anxiety/panic disorder and am dealing with depression as well. Needless to say when this first started the anxiety attacks went into overdrive! WoW, what a ride this has been, but I am starting to settle down a bit now. Is is normal after a dizzy spell to be exhausted for a day or two afterwards? I feel like I'm in a fog, my ears ring constantly and the pressure in them is horrible! Hopefully my Doctor is right and this will eventually run it's course. Thanks for the site and thanks for listening. Be Well Everyone! Maria


Thank goodness I stumbled across this site! It has made me feel so much better about my diagnosis. I can hardly wait to send this link to members of my family that think maybe my Doctor is missing something. I'm in week 4 of this brutal disease. I was completely out of commission most of last month, but I've started out 2008 with the dizzy/lightheaded spells getting further and farther between. I'm so sorry that there are so many people out there that are suffering from this, but it has been comforting knowing that I'm not crazy. I have an anxiety/panic disorder and am dealing with depression as well. Needless to say when this first started the anxiety attacks went into overdrive! WoW, what a ride this has been, but I am starting to settle down a bit now. Is is normal after a dizzy spell to be exhausted for a day or two afterwards? I feel like I'm in a fog, my ears ring constantly and the pressure in them is horrible! Hopefully my Doctor is right and this will eventually run it's course. Thanks for the site and thanks for listening. Be Well Everyone! Maria


Marita

Glad to hear that you are feeling better. Keep fighting!

I also feel a lot worse in the mornings and get much better as the day goes on. I'm almost normal by night time!

Keep remembering that this is not life threatening though it is 'life limiting'. You will learn new ways to cope with everyday life. One good thing I learnt at the ENT was to physically move around when I am feeling dizzy and this does work, also to walk faster.

I went to the Pantomime yesterday and it was good fun. I had my ear plugs in because it was soooo loud!

Hope you keep on improving, take care.

Sandie


Hi all.

I just wanted to say that I don't come around here much anymore because that dreadful disease is continually on its way out of my system. I have been feeling so so so much better most of the time. I am proof that this thing does eventually go. It's been almost 3 years for me. I have strings of days where I feel 100% and can do just about anything I want to. Then I may get a day where I feel kind of blah but that's about it. No more strong symptoms at all. Believe me, I had a particularly horrible case of this - I've had just about every symptom I've read about and it lasted for such a long time. It knocked me off my feet and almost out of my mind. There were days I could do nothing except get hammered by the symptoms. Of course, I was afraid which led to anxiety/depression.

But now, I hardly think about it anymore - I hardly feel it but when I do, I know it will pass - and it seems to be mild when it omes around these days. I guess I will continue to improve from this point on. This went from an all-encompassing horror to a feeling of great relief. Yes, it may take a long time to get through this but you will. I'm telling you this because I remember scouring the internet for hope and trying to find one person who has gotten better. Well, here I am. Please remember that when you recover, come back to these websites and let everyone know it! They will need you for support.


Hi all, Marita, so glad to hear the change of tone in your post. I'm happy that you are taking back your life, and starting to fight this thing. Definitely don't overdo it. Listen to your body, but do try to keep getting out of bed, and keep trying to challenge your brain. When you are feeling dizzy (as long as you can handle it) go for walks or try to keep moving. Help your brain learn what normal balance is again. It will do wonders for you.

Yes, I'm still taking Ginko. It really did make a huge difference for me. My chiro advised me that it would help with the dizziness, and sure enough, it did. Not sure if it works for everyone, but I've been taking 3 or 4 a day and feeling much better. It also helps you feel less foggy. I'm not so forgetful now. ;)

I did come down with a nasty cold this weekend, and it brought back some mild imbalance. My sinuses are completely clogged on my affected ear side, which I knew would be bad news for me. Luckily, it hasn't turned into anything too terrible, but colds definitely reek havok on Labs sufferers.

I hope everyone is doing well and getting better. It's nice to hear stories of new accomplishments. I hope we all keep finding new ways of trying to still enjoy life.

Take care everyone...

Skye


Blondie [yes dizzy too] This site is brilliant ....I have been suffering symptoms since end November [6 weeks already!]after having a VERY mild bout of Labs 2years ago. This time it started with car sickness/nausea which i put down to being too busy looking after 3 sprogs!little did i know lol . Just finished my second course of antibiotics/ear drops, my doc has now given me steroid nasal spray? not sure if I really want to be taking this?? Anyway I'm willing to try anything and I'm off to see a homeopath for some magic potion asap. Thanks ALL for the invaluable advice,I have almost normal days with only partial hearing and 'woolly/ dizzy' headedness but today has been the lot nausea,chronic fatigue,dizzy the lot. The idea of going shopping ALONE brings me out in a cold sweat[so I'm saving for when I'm better I suppose!!!!] - I'm sure the anxiety goes hand in hand with this monster virus. I do feel for me it is mind over matter, think positively which I know is easier said than done, try and keep as active as you feel you can be. The 're-train your brain' advice makes sense to me its just having the confidence to go for it! Take care fellow dizzies, Blondie


Hi, everybody

After 4 (four!) horrifying years of my 5th bout of this illness (35 years with it on and off) I am finally feeling kind of my old normal self. Remember, I was normal in between the bouts.

I have just read the latest post written by BealteMark - I can repeat everything, that he has said. It makes TWO of us (I am sure, there many-many more!!!) who almost recovered even after years of sufferings. I had my first airplane flight to and back from Boston. I was extremely nervous, but my symptoms did not get over the edge. I used my Bose noise cancelling earphones, I drank plenty of juice and water, I took dramamine (anti-motion sickness med.) My ears hurt while we were landing, but it was not too bad. Like my daughter labeled it - I was "on adrenaline". I was indeed very tired, but absolutely HAPPY to see our kids and our first grandson in Boston. And they were happy, that their mom can enjoy life again. I DID IT!!!

Dear friends, do not give up! Live day after day (one day compartment), because your life is not over. You WILL HAVE BETTER days ahead.

I eat right: ZERO salt added, plenty of fresh fruits and loads of vegetables (raw and cooked), different (wheat free) grains and serials. Some fish and seafood, some chicken. Practically no red meat, dairy and eggs. If I eat some of "prohibited" food (very seldom) - I do NOT feel guilty, though, and nothing bad happened to me if I ate. I am taking care of my body and it started paying off - I am feeling better and my self-esteem is growing little by little. I am not in panic and do not run away from people any more. Oh, life can be so go-o-o-d!!!

Yours, Anna from OK


Hi all, Feeliing really low today like so many have great almost normal days but when its bad I too just want to cry and hide under the duvet. Does anyone know if there is a link between inner ear probs/labs and candida albicans [yeast overgrowth] take care x


Hi all, I just thought the following site might be of interest to some of you, It explains a lot about the stiff necks, fatigue, aching muscles etc, that go with all these vestibular problems.

http://www.hearinglosshelp.com/articles/balancesystem.htm

Hope it is of some help, good luck and good health to all of you. Mick.


Megan,

We all hope that the diagnosis we get is the right one.. If you think MAV is what you have, then I would explore that... Not sure because I dont consider myself as having MAv even though I have suffered for so long. I just feel that I have have an inner ear disorder that gets aggravated by colds and stress..... Remember, before this last blip, which I am still going through, I believe I was at like 99% for 3 months straight... It was also 3 months of no sickness (colds,etc..)

Sam


Skye,

I am till in the throes of this BLIP. It is quite difficult being back at this stage. I just went on vacation for 2 weeks.. I did not have a great time. Apparantly I had eaten something and ended up with gastro-enteritis.. Which left me with a fever and vomitting for 5-6 days... Needless to say, my dizzies have been extra annoying lately. I appreciate the compliment, but like everyone else here I am just plodding along trying to get to the next day hoping it will be better than the day before.

It has been 2.5 years for me (Not all of it bad), but my wish is tou have none of it bad.

Sam


Anna, Your post made my day! I am so happy for you. Take care.


Blondie,

Not sure about the Candida, but I would guess that technically anything could cause issues with your inner ear.. But I would take a guess that a bacterial or fungal/yeast infection would be much more severe and would be much harder to get. That being said, I dont think it is imposible to say that you had a viral inner ear infection and a Candida infection was causing decompensation events...


Hi, everybody

Mick - you found an extremely informative, educational article! I read it attentively to refresh my own knowledge and forwarded it to my dear husband (after so many years of watching me closely, he still underestimates my everyday struggle with the disease). Everybody - do not miss the opportunity to understand better our illness:

http://www.hearinglosshelp.com/articles/balancesystem.htm

Blondie - yes, it can be yeast overgrowth (candida) that effected your inner ears. But, from one clever doctor (rare thing!), allergologist-immunologist, I understood, that such possibility is very distant. She said, that if I would only had such overgrowth, it would probably spread FAST inside my head, and I would be dead by now. It can be anything, in fact: any microorganism, any virus. Scientifically speaking - the only way to know for sure - is to take a tissue sample from the site of invasion. It is difficult for natural reasons - our delicate inner ears are inside our sculls. Of course, do not allow anyone to talk you into doing something like this!

Let mother-Nature and your own selves take care of your recovery process. I am ABSOLUTELY SURE(even after 35 years of dealing with the beast)that even in the worst cases like mine, or like Mick's, or like BeatleMark's - every time when we struggle to regain our lost balance after horrible downfalls - we are RECOVERING. By millions of years of evolution our brain is designed in such amazing way, that it can SUBTITUTE one impaired or even lost sence for another. It is a hard and painful way to go, but it is still POSSIBLE.

Anna


Anna!!!

That is so great to hear that you are feeling somewhat normal. I hope to soon see a post saying you feel great.. That would be amazing.. and would give alot of hope to everyone on this board. Also, it is about time :)

Sam


Hi everyone,

Anna, so glad you had such a good time in Boston. You were so brave!

It is lovely to see that you are at last coming out of the fog and feeling better.

Beatlemark, I too have come through this wicked thing after 3 years and my life is nearly back to normal. Not quite - I still have bad days but it is gone after a couple of hours and doesn't bother me so much, and doesn't bother me every day.

So yes, there is life after labs!!!

Keep fighting everyone, don't be afraid of the symptoms and you will win in the end!!

Sandie


Rich,

Strange thing..... I must have submitted like 3 posts total yesterday, however only the one I submitted today has made it to the board.

(The one I approved earlier came in while I was reading email on my iPhone so I published it immediately. The others were filtered away to my Sharp Blue email folder so I didn't get to them till now. I will approve them now - Rich)


Hello All, Hope everyone is doing ok. I've been under a lot of stress at work, and I think it's making me a bit more dizzy than I've been in weeks. Sigh. Oh well...I'm still trying to stay positive and keep moving! I'm visiting a wellness center next week. They focus on many types of therapies, from chiropractic, cranial/sacral, balance/vertigo treatments, TMJ treatments, metal detoxification, etc. I'm excited to see if they can help me feel less off-balance. I've also got an appt with a new ENT to see if he thinks that labs is my correct diagnosis.

Anna-Had a question for you. I was reading back through some old posts, and at one point, you mentioned fistula. Is this something you think you still might have? Recently, I've started thinking that I may have Patulous Eustachian Tube..which is a Eustachian Tube Dysfunction. One of the symptoms that I've noticed over the last few weeks is that when I breathe in through my nose, I hear my breath in my left ear. (my affected side) It feels almost like the air is being pulled from my ear into my nose, if that makes sense. And often when I pop my ears, my let ear sounds more like a whooshing sound than a pop. Also, when I hum or talk, my voice almost echoes, but only in my left ear. I've read that the symptoms of PET are fullness in the ear, hearing your breath through your ear, voices sounding muffled or echoed, tinnitus, and if the case is severe, dizziness or vertigo. There seems to be minimal hearing loss. (I have never experienced hearing loss.) Just wondering if you have heard/read much about this in your years of research, or if anyone else here knows much about it?

Thanks to anyone who may have some info. Again, I hope all of you are feeling well, and getting better every day.

Skye


Hi All,

Thank you so much for your advice, I have drastically changed my diet and feel 70% better most days. A friend told me to buy 'The New Optimum Nutrition Bible' book by Patrick Holford and it all makes so much sense, 'EAT NATURAL' is my new mantra! Food can do amazing things to your body.

I've found an interesting chinese herb Astralagus it boosts your immune system [a bit like echinacea] for those that are fatigued and have that 'washed out' feeling like I have, available from any health food store. I've been taking this as a tea, it tastes a bit like pond water but I definately have more energy ! and Plantago tincture for tinnutus has calmed down those spooky noises. I'm thinking about going to see a Nutritional Therapist as I've had the obvious womens problems with candida albicans [yeast overgrowth] on and off for the past 6 years. In my experience with docs they will not admit, sadly that candida albicans even exists and I walk out with yet another anti-fungal drug when what I really want is referal! A Nutritionist should be available to everyone via a doctor, I'm sure at least half of us would then be without his awful inner ear monster.

I'm feeling much more positive that I can make myself better, I've been working for the first time in 6 weeks have had tension headaches probably from tiredness but otherwise no dizzies .....yet? its incredible how quickly you take learn to live with these horrible daily symptons. Still hopeful that one day I will wake with a totally clear, focused head and painfree eyes and ears ! Take care all, Blondie


Sandie - I keep some of your comments in my diary! I smiled at your comment about us both being married to "the same type of guys" who always know and always recommend us WHAT and HOW to do. What amazes me again and again - so many people on this site became great OBSERVERS of their condition. These observations could be an endless sourse for research HOW human brain works. The sad truth - there is very little research being held in this area. Maybe, things will change some day in the future. Anyway, I have been keeping my diary (or logbook, call it whatever) since the beginning of 2004 (my worst time - my agony, in fact). Maybe, it can be of use for someone's future research, who knows. My diary just keeps me SANE - I can see, that I still can control my reasoning, despite my emotions going over the edge (I feel sorry for my rare outbursts).

Rich - thanks again for the site.

Anna


Marita,

Just wanted to comment on the Shakiness/Tremors... For me I used to have this constantly.. My head used to feel like it was shaking all the time.. It was such a terrible feeling... It went away.. I cant tell you when, but it did.. So hang in there


Hi all, Tried to send this through the other day but it hasn't shown up. I apologize if it does show up and there are two posts from me.

Anna-I read back through some of your previous posts, and you mentioned fistula. Do you still think you have this problem? Has anyone ever offered you any type of treatment or help with this? I've started thinking that I may have Patulous Eustachian Tube. When I breathe in through my nose, I can hear it in my left ear. (my affected side) Also, when I breathe in through my nose, it feels like the air is being pulled through my left ear and into my left nostril. (I don't feel or hear anything on the right side) Also, when I hum, it is sometimes very echoey or hollow sounding on my left side. Very strange. These symptoms have been with me from the start of all of this, but didn't realize that these were actual symptoms. Just thought I was crazy. All of this started after a flight to Baltimore for work so I'm wondering if the flight caused my Eustachian Tube to disfunction, or if there might actually be a tear in there.

I was wondering if anyone here has had these symptoms, or knows anything about it. I've read that these very common with Patulous Eustachian Tube, as is aural fullness, tinnitus, and dizziness.

Currently, my only symptoms continue to be very mild tinnitus, and a very off-balance feeling. Some days I feel more dizzy...other days I feel like I'm rocking, or that stationary items are moving.

Any help/info/suggestions would be much appreciated.

Hope everyone is doing better today!

All the best, Skye


I am finally able to say that I am 100% better!!!

I put in a post in July 07 after suffering for 5 months with the same symptoms as most of you on this site. I went for every test (MRI's etc) and could not get help from anyone until I went to a chiropractor. Within a few weeks with treatments every 3 days, I was starting to feel like I could get out there and enjoy life again as well as exercise.

It took about 2 months of fairly regular treatments to feel 80% and then I gradually got to the stage that I am at now (100%).

I will continue to have monthly treatments from the Chiro and the other thing which helped me was to get back into regular exercise.

I thought I would be left with the terrible nausea, dizzyness and anxiety for the rest of my life, however I am here to prove that there are people who come through this and feel great again.

When I was sick I would look every day at this site to see if someone was going to report that they were 100% and to get ideas on what could be done to help.

Try a chiropractor it could prove to be your saviour as well.

Good luck and good health to everyone

Lindy


Skye, I also had the exact feeling you were talking about long story short. I got my 2nd verterbra in my neck religned and I feel a huge difference. The motion sickness is completly gone. I am convenced that was caused from the birth control. The only slight symptoms I feel seem to be allergy caused and I control those with allegra and veramist and two herbs. unfortantly it took me three years as well to figure this out. I finally was able to fly for five hours and still felt great no reprocutions. (sorry spelling) Sky thank you for noting the chiropratic part. I finally found a great one through another patient with the same symptoms and he was very informed about the vertigo causes. He did confirm that a neck out of alignment could cause dizziness. Anna I am so happy everything went well. I still cant believe you have dealt with this for as long as you have. Everyone keep in mind when you travel in an airplane (airline) the cabin pressure is about a third of what you are actually flying at. Example if you are at 24000ft your ears are actually about 90000ft if not less. Which makes me think it is pure motion which sets the ear thing in action.(Probably a little nerves as well0 Thanks for all of the help, Skye, Anna Hope everyone continues to improve Rhonda


PLF - perilymph fistula, tear in membranes in the oval, or round windows, or (more rarely) in the bone covering labirynth of the inner ear. Can be a result of a head trauma, or a whiplash injury, or pressure change. Practically no imaging is available to see a tear in soft tissues (like inner ear membranes).

Skye - I DO think I still have a perilymph fistula PLF on my left side. It has been healing extremely slowly in the course of the last three and a half years. I had it extremely severe back in 2004. The condition worsened after excercises prescribed "for dizziness" by a local ENT doctor (who did not have any idea about the subject and who ruined my health and my life completely). My husband (having only good intentions, of course) pushed me to fligh to California to "relax" (he just wanted to ski on lake Tahoe himself). Unfortunately, I did not say my firm NO, but I gave up to his energetic persistance. It was my BIG-BIG mistake to fly at that time - it was a complete disaster. That trip worsened my left side headache, ear pain, strange noises in the head and ears, brought my noise sensitivity to the point of putting pillows around my head and crying all day long, I did not sleep at all, nightmares and sweating. I was rocking, off-balance, nauseous, anxious, depressed. My head was shaking and I literally could not hold it on my neck (I wore a cervical collar, which did not help much). My head felt like a gigantic magnet or as if it weighed tons, my left eye obviousely drooped down on my bad days, I always had a very strange sour taste on the root of my tongue from the left side (the sign that a trigemental facial nerve was involved). My hearing was not affected, on the contrary, all sounds were intensified, magnified, thus outside world was frightening. My body and my mind felt as if I was 150 years old. Looking back at that time, I still wonder - how did I not dye? What an IDIOT I WAS not to start thinking and not start doing research on my condition earlier, back in 1995, when I had my previous almost 2 year bout (also with a PLF on the left side and I induced it with the same quite violent exercise, recommened by the same local ENT). Who could expect that such a "harmless" thing as fast moving of the head from vertical to horizontal position and back five times on each side twice a day could induce such pressure in the skull, that a membrane sealing the inner ear from the middle ear would break? Perhaps, and unfortunately for me, my ear membranes are as thin as my bones (I am a very thin-boned, delicate framed, fragile looking female, although I never had any bone fractures).

Skye - on the Internet and in several personal books, I found only negative experiences in real people after so-called "PLF patching". Two or three positive results out of 30-40 reviwes. As for those rare people, who claim, that they would have never recovered if they did not have a PLF patching done - they DO NOT KNOW FOR SURE: maybe with natural healing and with restriction of offensive activities they would have recover faster without very difficult post-operative period.

It is my big NO! to any intervention to my inner ears in my current situation with the existing state of head and ear surgery.

Lindy - great!!! I am very happy for you, I wish you all the best - enjoy every singe moment of life! I am staying with you all, I promise to report more on my own progress.

Anna


Hi

Anna, you made me laugh when you say you have kept some of my comments in your diary, especially about our husbands! Mine is still the same. I don't know what I would have done without him over the last three years but at times he is so frustrating as he always knows best, I sometimes call him 'Doctor'!

But, he has always been a great believer in 'you are what you eat' having been a weightlifter for many years. And, I now totally agree with him. Bad nutrition and abusing our bodies with stress or whatever can only be our downfall.

Skye, I too have the same symptoms as you - dizziness some days, feeling off balance and as if other things are moving, though my symptoms are mild now. I cannot pop my ears when I pinch my nose and blow through. Sometimes it pops on the right side but never the left. I suffer mild tinnitus and ear pressure. I have never had a diagnosis for this and my visits to the ENT were a waste of time.

I still suffer on a daily basis but cope really well with it now as my symptoms are mild but I have been referred back to the ENT just in case something new has been developed in the last three years - I am not holding out much hope!!

I still feel that the only way to get any quality of life back is to face this straight on, eat well, keep yourself healthy and take plenty of exercise, especially walking.

Sandie


Hi all, Anna-Thanks for the good info about PLF, as well as ear surgeries. It's nice to have someone as well-researched on here as you! Thank you.

Rhonda-I couldn't agree more about the Chiro. My first vertabrae is completely out of alignment, and I've begun treatments. They seem to really help with the dizziness. Hopefully one day they will help remove it all together.

Sandie-My symptoms too are fairly mild. I do have trouble popping my left ear often..and when it does pop, it usually sounds like a whooshing sound instead of an actual pop. This leads me back to the idea of PET. I'm starting to think there may be some type of tear or tiny hole inside my ear. My official diagnosis has been Labyrinthitis, but since my ENT spent all of 10 minutes with me, I am not very confident in this diagnosis. He initially suggested Meniere's, but when my hearing tests came out normal, better than normal in fact, he decided that it was labyrnthitis and sent me on my way. I had to beg him to send me for an MRI, which came out clear...thank goodness. I'm finally going to a new ENT tomorrow, and hopefully he will be able to spend a bit more time with me, and perhaps have a different diagnosis.

I will keep everyone posted on what I find out. I plan to ask a lot of questions this time about PET, PLF, etc.

Thanks again everyone. Let's all keep fighting this battle...TOGETHER!

Best, Skye


I have posted in the past, i am a 4 year sufferer that hopefully has just had his problem solved. I have gone through 3 ENT's and finally hit one that identified my left Salivary gland duct was blocked. He pierced the blockage and a 1/4 cup of blood, fluid came out. It hurt very badly, but i have not been dizzy in a week.


Hey all, Just saw my 2nd ENT this week, and received a new diagnosis. PET. (Patulous Eustachian Tube) He basically said that my eustachian tube isn't opening and closing all the way, like it normally should. The common symptoms of PET are aural fullness, tinnitus and dizziness. He also said that from it being open so much, it probably led to a case of labyrnthitis. My options for treatment are not great: 1. Estrogen nasal drops-works about 50% of the time. 2. Insertion of ventilation tube-works about 50% of the time. 3. If my problems become severe, more invasive surgical methods can be taken.

The ENT thinks that my problem is actually on the mend, as my symptoms are becoming more mild and easier to handle. His suggestion was that I should just do nothing, and see if the problem subsides all together. He told me to give it another 4-6 weeks.

Sigh...another frustrating day. It's great to have a diagnosis, but I wish for once I'd get a diagnosis that actually included some type of positive, helpful treatment.

I'm currently taking high quality supplements and ginko, and visited a wellness center today that claims they can help with my balance issues. They do everything from chiropractic work, laser therapy, acupuncture, massage and more. I'm just going to keep fighting to get well and beat this bloody illness.

I really hope everyone is doing better today. If anyone has any experience with PET, please let me know. I'd love to hear about other treatments/options/stories.

Thanks for listening.. Skye


Hi, everyone

Unbeleivable!!! It is late in the evening, and guess what - I tried to put some mascara on my eyelashes - I have not WANTED to look good for long-long months of my misery because I even HAVE NOT CARE how I look. My attractive body image was far-far away from me - in some far-far past. Just a year and a half ago I was sure, that my life is ruined, all I wanted was to die without suffering in my sleep. I DO NOT WANT TO DIE anymore!!! I am ready to live and to work and to love my family and to travel. Tears are streaming down my face.. I will regain my senses tomorrow, I promise to put my success story in short and simple words and I will share it with you, friends, with the whole world! There IS life after Labs.

Anna 56 years old Russian born professional from OK(tired, fatigued, but happy again! after 4 years of my 5th bout of DIZZINESS/VERTIGO/HEADACHES ETC., altogether 35 years with THE BEAST)


Hi all, I just found this site while trying to figure out what to do next about my diagnosed labrynthitis. I read through the first two pages of comments by people suffering similar symptoms. I had my first episode on May 25, 2007 just prior to my husband's and my trip to Spain. I was driving my car and had the aura, fuzzy head, dizzy, heat down my left shoulder into my back and nausia. The condition disappeared in a few minutes but left me frightened and worried. I had a series of tests done including a CT scan, EKG, eye test and many more. The emergency doctor determined that I had labrynthitis and my doctor told me to take bonamine when I had symptoms and that this condition would likely gradually disappear. Unfortunately, in the past month the episodes have become more frequent-Dec.14, and 5 episodes in January. Most episodes include an aura then dizziness, fuzzy eyes and a sort of detached feeling, nausia but I never get physically sick. Sometimes I feel okay after the episodes which last 1 to 5 minutes and other times I feel exhausted, have headaches and a general feeling of being unwell. I have fears and am experiencing anxiety as a result of the episodes. My one brother has MS and another brother has experienced seizures that were thought to be caused by a serious accident. I am a teacher and have had a few episodes at school- on yard duty so I just moved to a bench and let the symptoms pass and even while standing in front of my class where once again I sat down and continued teaching while experiencing a weird sort of feeling wondering if I sounded normal to the kids or was talking in a strange voice. I have so appreciated reading the heart wrenching experiences of so many people and also am grateful for the suggestions and good will shared by respondants on this site. I am returning to my doctor tomorrow and with all of the help from those on this site may be better able to talk to my doctor about my symptoms and get help. Thanks all for your forthright manner in dealing with this difficult and confusing condition. Karen


Anna

Can I just ask if you or anyone else on this board suffers from head pressure. Mine is like a pressure which I think if it got worse my head would burst.

This is a new symptom for me and has been happening off and on for a couple of months, but is the first time I have felt it in three years of VN.

Maybe it is hormonal as I am 47 years old!!

Sandie


Karen-

You speak of an "aura". Please be sure to ask your doctor about Migraines.


Anna,

Amazing!! Just amazing ... I am happy for you.

Sandie,

Alot on here have pressure. My theory on new symptoms over the course of things is that your brain is trying to interpret the signals and has done some tuning, but possibly overshot... Tuned the wrong way.. It should correct To me its a sign that your brain is attempting to fix the problem.


Hey Sandie, Just wanted to mention that I do get head pressure. Mine feels sort of like sinus pressure, though. It's usually right behind my eyes or sinuses, and feels like my head is going to explode. This is a new symptom, and has only been happening over the last two weeks.

Skye


Rich L. – how are you doing after the surgery on this blocked salivary gland duct? No dizziness for a week, or two – it is very-very encouraging, promising! Wish you all the best! I remember you posted long time ago as a “different” Rich (meaning not Rich Baker – the owner of this site).

Karen – I can imagine how it feels – being in front of a class of young darlings at school with this DIZZIES. Almost next to impossible not to fall apart, not to panic, not to show them how frightened you are – you are a very brave woman, Karen.

Sandie – hormonal changes in women indeed play a big role in causing headaches of all types. As for me, I did not find a certain correlation between severe bursting type of headaches and hormonal changes during my long-term bouts (months, years) of IT. I would rather say, that the pressure from the inside of my head outside (like my head is going to blow up) builds up when the weather changes. It is much worse when atmospheric pressure goes down (from high to low) accompanied by strong winds (very common in Oklahoma) and with fast considerable temperature changes. I am a live barometer! For example, yesterday I could predict, that such condition would come even without looking at my wall hanging barometer, or on the Internet, or at the outdoor temperature. My head was bad from the morning, when I came home from work (I am going as a volunteer for 2-3 hours a day into my old favorite lab!) – I was so headachy, that I was barely moving my legs, went straight to bed, put a cold ice pack on my forehead and hid from everybody in my sound protected bedroom. To my big disappointment I became less steady and had to hold on walls to prevent swaying. Late in the evening I looked up on m y barometer – here we are! In seven-eight hours time period atmospheric pressure dropped down for 35 millibars (the whole scale ranges from 950 to 1050 millibars). The temperature dropped from +20 degrees C to +8 degrees. The fast RATE of such changes is bad for my head. One diagnoses is quite “in vogue” now: MAV – Migraine Associated Vertigo. Its definitions vary from one source to another. But some dizzy sufferers report benefits from being taking migraine medications on a regular basis. Again, I got much worse from taking just only one pill of Imitrex, widely advertised for migraine. It was exactly that scary feeling of unbearable pressure and burning inside my poor head. I threw the two-pack in the trash.

Skye - You said “The ENT thinks that my problem is actually on the mend, as my symptoms are becoming more mild and easier to handle. His suggestion was that I should just do nothing, and see if the problem subsides all together. He told me to give it another 4-6 weeks”. I think, that your ENT is absolutely right about giving your PET more time to mend – it is a very good approach. Try those nasal drops – why not? Forget about pushing “quicker recovery” by any aggressive intervention - it does not work this way. I know, that it sounds sad, it is sad indeed, that you cannot get immediate or at least fast help. But you DO have improvement in view, you DO have light at the end of the channel. Look back at that dark part that you have already overcome – you were worse back there. Everybody, get here on this site when you feel lonely while still making your bumpy way. While going to sleep - count your blessings, count your achievements – you definitely have plenty. Praise yourself for your own courage, and do not be shy to REMIND others (who care), that you are BRAVE. Anna


Skye - I found the following contemporary article on Patulous Eustahian Tube:

http://www.emedicine.com/ent/topic208.htm

Forget about surgical procedures: you can DIE from them!

Anna


Sam - I like your theory of the brain trying to adjust itself, this ajustment being manifested by head pressure, "exlpoding" headaches or call it whatever. It sounds quite a thruthful explanation.

Karen - Kim paid attention to the word AURA that you have used. I missed this word "aura", which can be a clue to your misery! You might have MAV - Migraine Associated Vertigo. Migraines can be with, or without aura. 30-40 years ago the classical medical definition of migraines were "severe headahces with preceding aura (visual and/or sound disturbances)". Later the definition was changed to "moderate to severe headaches with, or without preciding aura". Karen - maybe you can benefit from migraine medication. There are many different types of them now. You can investigate this matter yourself, before visiting your doctor - you can come to him or her with questions and/or suggestions.

Anna


Anna- Thanks for the article and for the words of encouragement.

Hope everyone is feeling better today. We are having major barometric pressure changes here in Utah, and I think it's affecting my ear. A bit off balance today, but getting by, and trying to stay positive and stay strong.

Take care all...be well

Skye


Hello everyone, Glad to hear Anna, that is so wonderful to hear. It sounds like Skye and Sandie are making leaps and bounds of progress also. Great news. I do have a question for Meagan. I was wondering if you have asthma one of my friends was complaining to me about the very same complaints we all have been complaining about. Except she mentioned the same throat problem that Meagan talked about. Made me wonder if that was not caused by asthma. I know that she (my friend), I had a slight case, and also had the throat complaint, but not nearly as severe as Meagan had been complaining about. I would not be surprised if Meagan do you know if you have asthma or at least check to make sure you dont? That might be an easy fix?

Hope everything continues to go well for everyone. It is nice to log onto this site and see the huge recoveries made by everyone.


I was diagnosed with Viral Labrinthitis about 5 weeks ago now, it is getting better. I do not spin anymore but do get very dizzy if I put my head back to look up or put my head down.When i get out of the car I sometimes have the feeling the road is still travelling.

I went for a CT scan today and could not do it because as soon as my head was back on the bed in the head contraption I became extremly dizzy I almost past out, and I also had the feeling that the technician was putting the bed back at an extreme speed. Also at the hairdressers I could not put my head back over the sink, or forward on that occasion.

My question is "is this normal" it seems that the back of my neck is causing these problems as soon as it extends somewhat. Laying in bed with a pillow is no problem although I do still get the swaying feeling when sitting up etc.

Any response would be great. I keep thinking it must be something worse.I am taking Serc 3 times a day at the moment.

Sylvia


A note for anyone looking into Migraine Diagnosis- There are many people who used to post here now posting on the Migraine Boards, and having some success with Migraine Treatment.

Please be aware of the following though: Migraines are treated with two approaches - Abortive, and preventative. Abortive medications are taken only after the migraine starts. These include Imitrex (like what Anna took), Zomig, Relpax, Maxalt. They can be almost "narcotic-like" and ARE NOT GOOD FOR DIZZY PEOPLE!!!!!

Preventatives are taken daily and are what many are having success with. These include, Beta Blockers, calcium channel blockers, anti-depressants, etc.


Hi all, Sylvia, what you are describing does sound like Labs. I have a hard time looking up or down, and often feel like I'm moving when I'm sitting perfectly still. I have found that chiropractic adjustments to my atlas bone have helped a great deal with this. For some people, their condition is aggravated by some type of structural injury or imbalance. If you are going to look into chiropractic work, be sure to look for an upper cervical specialist who can focus on your neck, which may be adding to your problems. That's just my two cents.

Also, many people (myself included) have found that drinking lots of water, eating healthy, and taking vitamins or supplements can bring some relief. I've been taking a very strong anti-oxidant and ginko daily, and really think they help.

I wish you luck as you discover what works best for you. The key is to keep trying, and never give up. Also, know that you will get better!

Kim and Rhonda-Thanks for the extra info that you are always willing to provide. It's so nice that there are people like you, Anna, Sam, Sandie and many others who are constantly searching for methods of healing, and passing on your great info to others who need it!

Rich L-Are you still feeling better?

Take care all..

Skye


Hi,folks

Sylvia - you are going towards recovery very fast indeed. You pronounced yourself "it is getting better" in just 5 weeks (!). In your case it looks like a classical Viral Lab which comes once in a lifetime and never reminds of itself. If you feel dizzy from hairdressers - forget it for a couple more months (arrange your hair yourself, or aks your friend). While sitting up from the supine position and vice versa - do it very-very slowly. Ask a technician, dentist or whoever else recline their chair in small increments and you COMMAND them how fast. People usually DO understand and try to be careful and helpful. You have not recovered yet, but you are on your right way.

Kim - that is good, that you mentioned, that those migraine Abortive medication - they are not RIGHT for dizzy people. Imitrex for exaple is made from exotic natural plant - very strong narcotic. After my bad experience I will stay away from it.


Hi everybody

Skye, thanks for your appreciation to us all, it is nice to know that our comments do actually help people!

Sylvia, since I started with this illness three years ago, I have not actually been back to the hairdressers! I had two awful experiences in there and both times ended up in tears. I now have my hair cut at home by a friend of mine who is a hairdresser. It is so much easier for me. At first with this illness everyone has the same problems, i.e. in hairdressers, having a shower, travelling in a car, watching TV, even reading magazines is difficult. It is entirely normal with this illness because your ears are actually sending the wrong messages to your brain and your brain cannot make any sense of them, hence the feeling of movement and swaying when you are actually quite still. As Anna says, you do seem to be recovering well and the normal recovery rate can be about 6 weeks with no recurrence after that. I hope sincerely that you are one of the lucky ones!

Unfortunately, I have been one of the unlucky ones though not as unlucky as some people. I have had it three years but have had months of feeling better during that time though never 100%. Life goes on, challenge it and don't be afraid of it. Take this as a warning, get your life back on track, eat well and stay healthy. I was very run down and eating rubbish before I fell ill and have always blamed this for my downfall.

Good luck.

Sandie


hi all, rhonda, i don't have asthma. i wish it was that simple. i had a flare-up of about 3 weeks duration during which my ears became full and that throat feeling was on both sides. it has been like that before but the left side fullness (near the carotid artery) stays with me constantly since all this happened. the severity fluctuates though. i really do feel there is some autoimmune component as these flare-ups happen from time to time. sometimes i'm not even dizzy and i have that feeling. i sure hate it. there was one guy on this site that mentioned that same feeling but i can't remember his name. just living with it as i don't know what else to do. take care all. megan


Helllo I just wanted to add to Meagan, that my friends issue is also in her case caused from high blood pressure as well as her asthma. If you havent already investigated? Glad to hear it sounds like most are doing well. Rhonda


Oh, yes, Sandie - you found that exact word: TAKE THIS ILLNESS AS A WARNING! The warning, that we have been doing something wrong with our lives: we have been stuffing our bodies with BAD food.

I am feeling so-o-o much better - still cannot beleive how tremendousely I have improved. Alas, I lost those recent four years (oh!) of my life to the awful beast, and many-many months in the past(years if all combined). I am still a little bit afraid of it. But now I am enlightened - I know how to get my life back!

Young people and "oldies" - DO NOT FOLLOW MY DEVASTATING MISTAKE - EAT RIGHT! Anna


Anna,

What does your daily/weekly diet consist of?

Thanks for the info. I am struggling to regain my senses after suffering for 6 months. Any info on diet would be greatly appreciated!


I had cholesteatoma a few years ago. I had tubes in my ear when I was young and several ear infections. Then many years later one day I could tell I had less hearing in one ear. Got it checked by a specialist and sure enough cholesteatoma. First surgery removed it and cleaned out my estation tube. My estation tube is not open or clear like my other. A few months later got prosthetics in. I didn't have check ups until several years later which they said it was back. I still have not currently gone back for cleaning or anything else. Don't know when I'll go back. I've done some research and think that milk has at least contributed or caused many ear problems. Can anyone help verify or give some in site on this. Anyone know any herbal/ natural things to help clean up infection. Feel free to email me about the milk or herbal/ natural stuff. My story is also not very detailed.


I have to let everyone in on this!!!! The key to eliminating this for good is the use of anabolic steroids(only very small doses are required and the use of vitamin D. Give it a try I guarantee it will work instantly.


Hey all, Just thought I'd share a strange story. Yesterday morning, I woke up and felt like my bed was rocking. "Oh no," I thought. "Another vertigo attack." Turns out, it was actually an earthquake that I was feeling that took place in Wells, Nevada...which is about 3 hours from where I live in Utah. The rocking only lasted a couple of minutes, but was definitely a scary sensation, much like a dizzy/vertigo attack, as many of us know.

The strangest part of this, though, was that just that two minutes of rocking really made me feel off balance for the rest of the day. It took lots of walking around, getting outside, and forcing myself to do all of my normal errands to finally get back to feeling ok. Pretty crazy how sensitive I now am to motion like that. I used to absolutely love amusement rides and flying in airplanes, and now those things absolutely terrify me.

Anyway, hope everyone is feeling better today. I'm feeling a bit better than yesterday, and definitely happy that I did not wake up to my bed rocking this morning!

Take care all.. Skye


Hi John, Just came across your comment. Wanted to find out how you came across your realization. Did an ENT prescribe you low-dose steriods? What form of Vitamin D are you taking?

Thanks, Skye


Skye - it is quite amazing, the fact about you felt that distant earthquake. Those WAVES no matter what kind of them - sounds (waves in air) or waves in earth depth affect us much more, than normal people. I am happy, though, that it was not Mr.Dizzy who hit you.

Austin – interesting, that you think, that your ear problems are somehow related to milk. That might be true, because milk aggravates yeast infection everywhere in the body. Yeast can grow easily in milk. Yeast is “afraid” only of ACIDIC cultures. That is why vinegars and sour veggies and fruits are so healthy for our bodies. One can say – hey, how does milk gets into your ears? Oh, yes – it can easily! Of course, not mechanically (you do not drop milk into your ears), but biochemically, through digestive system.

Brandy - my “diet” (if fact – not diet – my way of living for more, than a year now!) consists of:

Breakfast (before going to work, you can cook it in evening and just : 1. Either real serial - millet, buckwheat, or corn flakes from a box with the least salt and sugar %. As a liquid part I use plain Soy Milk or just water with some no sugar added juice. I add different nuts and dried fruit (both in moderation). I add 1 teaspoon of ground flaxseed 2. Decaffeinated tea (any herbal tea you like!).

Second breakfast (“coffee break”): 1. Fruit (apple, peach, nectarine, or pear). 2. A cup of decaf. tea (or decaf. coffee) with a slice of lemon.

Lunch : 1. BIG green salad (any kind of green leafy vegetables or their mix), add tomatoes, pieces of apple, mandarines, bell peppers, avocado, or whatever you like! Put on top any fruit or vegetable dressing (if purchsed in a grocery store - find the one with minimum salt added! better zero salt), or just olive oil plus viniger. I eat my green salad with sunflower seeds, or cashew nuts. 2. Soup (any vegetable or bean soup - mashed in a mixer). I eat such soups with rice bread, or rice noodle, my husband prefers whole wheat bread. (2). or instead of soup - cooked vegetable mix with herbs and spices in sause made from soy milk or coconut milk 3. Fruits or berries of the season (cherries, pears, grapes, raspberries, melons, mangoes, orange, grapefuit). Try to eat the whole variety during your week. 4. Tea with a piece of dry fruit (fig, date, dry mango - they are like candy, but much better!) "Coffee break" tea or coffee with a piece of fruit, or dried fruit. If I get too hungry - I eat some nuts (walnuts, pecan, almons) Dinner: 1. Again green salad, I cannot eat too much of it in the evening, sometimes I finish my meal with this salad. 2. Cooked, or baked vegetables (like potatoes, cabbage, zuccini, spagetty squash etc. etc.), beans (red beans) of different kinds, lentils, buckwheat, mushrooms, tofu (made from soy).

3. Dessert - fruit smoothie (made of frozen or fresh fruits) or just a piece of fruit. What do you think, guys, does it look as I am deprived of my pleasure of eating????!!!!

I go to eat out with my family once a week on weekends, and I always ask to add ZERO SALT on my dishes. If I do not have a better choice, than a fast food restaurant – I select a dish which can do me the least harm: green salad with NO dressing, because those dressings are loads of salt and bad fats and with grilled chicken. This one time a week I eat fish (salmon, or trout, or halibut). I always ask a waiter to tell his chef to NOT put any salt on my food. It is interesting, that nobody is surprised by my requirement, I do not have to explain people, WHY I am asking them such a strange thing – every body seems very understanding and helpful! All major principles of such eating (which have plenty of scientific logics and supporting facts) you can find on Dr. Joel Fuhrman’s webpage and in his books:

http://www.drfuhrman.com Recently I purchased his DVD disk (look on the same page, just open different tabs and you will find it). It is fun just to watch him and his wife of 25 years cooking together from greens, different “unusual” vegetables, fruits, nuts, whole grains, lots and lots of herbs, instead of table salt. I have never expected before, that such great VARIETY of these things exist on our planet. And what is even more amazing – we can enjoy this VARIETY coming from different exotic places.

Well, healthy eating can cost more money and can take you more time and creativity. But let me ask you – is it better to BE SICK for months and years, is it better to pay doctors and drug companies?! Wake up, friends - dizzy and headachy sufferers. Take your health and life in your own hands, it is possible!

Good luck

Anna age 56 - (veteran, dizzy on and off for 36 years)


Hey Everyone, I have a question for all....especially the long-time suffers on here: How do you know if you have Labs and not Meniere's? I ask this because I just saw my third ENT since this started, and he said to me, "In someone your age (which is 30 yrs. old) Labs should not last this long. A few weeks maybe, but a few months? Definitely not. When it lasts this long, it usually means it's something else entirely, like Meniere's." My first two ENT's did not think that I have Meniere's, as I have absolutely no hearing loss. In fact, my hearing is perfect, and has been since the start of all of this. I've also only had one bout of vertigo. This new ENT is sending me for 4 new balance tests. Ugh.

I sometimes feel, and maybe we all feel this, that I know more about inner ear issues than the doctor's who treat me. I ask a lot of questions and bring up new advances in Meniere's treatments, supplements, etc, and often my doctor's seem clueless as to what I'm talking about. I also tried to explain that I've met (via online) several people who've suffered from Labs for more than a few weeks, and he seemed dumbfounded by this.

I just wanted to find out if anyone on here has had a Dr. try to diagnose them as having Meniere's, or something other than Labs, and how they came to decide this. While I do not think that I have Meniere's, I'd love to hear from others on here who are convinced that what they have is Labs, and that it can in fact last this long.

Thanks all. Hope you are all feeling good today!

Skye


Hi Skye-

I know you will have probably more than a few responses to your question.

Here is my story: I was diagnosed with Labs 2 years ago, however, it never "went away". When it "wasn't going away", I was referred to an ENT, eye doctor, and finally a neurologist. I went through all of the standard tests. CT scans, bloodwork, MRI's, balance tests, all of the same things many of us here have done. The ENT's opinion was that I had Menieres, even though I have no hearing loss. (He couldn't explain why). The neurologist, after all of the tests he put me through, diagnosed me with "Silent Migraine". (Silent because, I don't get many headaches.) I have a multitude of symptoms that are common (but not well known) with migraine. The most telling is that I have had 3 auras (my vision completely goes haywire).

After my diagnosis, I researched migraine, and It was unbelievable what all I learned. ALL of my problems could be caused from Migraine. Most important, DIZZINESS!!!!!

I have since started a migraine-preventative medicine, changed my diet, and have seen great improvement. I have my life back.

I am a firm believer that many are misdiagnosed with labs, or maybe had labs to begin with, but I don't believe labs lasts for more than a few weeks. I don't have the answer, I do know, that I had a serious upper respiratory infection right before all of this started. What the connection may be, I don't know. I also, am perio-menopausal, and my symptoms seem to fluctuate with my hormones.

I do not mean any disrespect to any one on this board who has been given a Labs diagnosis. I lurk here, because I didn't find any relief until I did my own research and started following a migraine regime. I remember the absolute "terror" I felt in the "early" days, when I was devouring everything on this board, looking for relief. If I can help just one person, than its worth it.

Kim


Hi Skye,

Menieres disease is always accompanied by hearing loss and usually the attacks of vertigo are quite severe and you fall to the ground i.e. 'drop attacks'. Menieres is a lot to do with fluid in the ears.

With Labs there can be hearing loss and with VN there is no hearing loss. Labs and VN are very similar which is why doctors usually call it all Labs. My doctor at the ent told me I had VN because I had balance problems and he thought that my balance nerves had been affected. Anyway, the virus causes damage to these nerves and it is this damage that causes all the problems with dizziness, balance, anxiety etc. It goes on for months or years because the brain just cannot compensate fully for the damage caused and lots of things trigger a relapse such as cold, viruses, allergies etc. Correct me if I am wrong anyone!!!!!

I totally agree with you in that we ourselves seem to know more than the ENT doctors! And, I do not believe them when they act so dumbfounded when you mention anything you have seen online, I just think they don't like you knowing anything about your condition because you are getting one up on them! I know that my local hospital has a 24 hour clinic for people who have these attacks and you have to wait nearly 4 months to see a consultant. All these people they see have long term problems or they wouldn't be seeing the consultants so why do they try and tell you that these cases are few and far between? By the time you get to see one of them you have been suffering for 4 months at least!

I personally know 3 people in my circle of friends that have the same as me. One of them was my next door neighbour for 4 years. We lived under an electricity pylon. Another friend lives round the corner on the same estate and under the same pylon. A childhood friend of mine lived under a pylon as she was growing up. Co-incidence? I just don't know.

Something to think about.

Take care

Sandie


Hello. I've had Labyrinthitis for 6 weeks now. The vertigo has subsided to only being slightly noticeable, but other frustrating symptoms remain: Pressure/tension in my forehead/sinuses, strained eyes, brain fog, forgetfulness, fatigue, anxiety, and depression. I've lately noticed that some of these symptoms are beginning to clear up, and I just wanted some input on something - if I KIND of feel like I'm getting a level head again, the vertigo is gone, and I can last for about half a day, is this promising for a quick recovery at this point? I need this to disappear so badly for so many reasons, as I know the rest of you do, and I was just hoping someone had some kind of experience with where I am in the process. Thank you all so much.


Kim and Sandie, Thank you so much for your thorough responses. I really appreciate all of the info you both provided me.

Kim-This ENT that I saw also mentioned MAV. He described something very similar to what you are describing. I don't feel like I get "traditional" migraines, but I do get headaches quite often..daily in fact. I have also seen white spots a few times during these headaches. And I do have several other migraine symptoms. If my balance tests come back negative for Meniere's, he is going to try to start me on migraine preventative meds. Hopefully these will help. I'd love to find an answer.

Sandie-I have always felt that your situation was very similar to mine. I've long thought that I had VN, not Labs, and that I've been left with some type damage to my balance system. My vertigo attack was not terribly severe. I felt off balance and and threw up for a few hours, but felt fine the next day. I even spent the next day on a flight to Portland, went out to eat, ran errands, etc. It wasn't until the pressure in my ear eased up a few weeks later that my balance felt really "off." Since then, I've had trouble sitting still, or being at my computer for long periods of time. I also occasionally feel "off" when lying in bed watching t.v. I am still able to work, and do most things that I would normally do. For that, I am very grateful. However, we all know how scary it is to be sitting in a chair, and feel like you're going to fall out of it. Or to be in a crowded place, and feel like you need something to hold on to. I still struggle daily with feeling off balance, but I try to just keep pushing forward and doing my normal activities.

It's interesting that you know others with this problem. I haven't yet met anyone near me with these issues, or who understands, so it's definitely hard at at times. It's nice to come to this board, though, and find people who do understand and are willing to listen or offer hope.

Thanks again all. I'm going to keep pressing on to find answers. Hopefully I will know something more concrete soon.

Jose-I'm sure that everyone on this board will tell you that if you are feeling better at 6 weeks, you will probably make a full recovery very soon! Great news! The best things I've found to do are: 1. Eat well-remove caffeine, excess sugar, excess salt from your diet. Supplement with lots of fruits and veggies and fresh fish or meats, and drink lots of water. 2. Some supplements tend to be helpful for many on here. I personally will not be without my B Vitamins, my ginko, and my grapeseed extract. I also take a high quality anti-oxidant. 3. Try to stay active. Try to get some exercise (without overdoing it), take walks, try to get out of bed if you are feeling well enough. This will help your brain and body compensate for any balance damage.

Hope that helps.

Take care all. Feel better!

Skye

PS-I also feel like I should maybe go out of state to see a specialist in this field. Any recommendations for a great doctor in America? I'm willing to travel anywhere within the country to get some answers. Thanks.


Hi Skye

Glad to see that you are being so brave and still going about your life.

This is the way I am - I just get on with it. Though sometimes it does get you down. I too, have never had a serious vertigo attack, though of course some attacks are worse than others. I have never fallen over, though I have broken my little toe twice as I love to bounce off door frames! I don't seem to be able to judge the size of the door frame and always end up banging into the frame towards my left side. I still do that even now when I am feeling extra dizzy. I am also very clumsy at this time. I have never actually been sick though I do feel nauseated.

I also have problems sitting on a chair when I am feeling bad and I feel like I am going to fall off! Have you ever sat in the cinema like this, that's an experience in itself.

These symptoms over the years come at different times which is what I find so strange. I suffer from dizziness and have balance problems but never usually at the same time. My balance can be ok for months and then it starts again.

Strange.

I think the answer is to take each day as it comes and give yourself a little pat on the back when you get to the end of the day and you have managed to get about your duties!

Take care

Sandie


Skye- I know one doctor in the USA, who answered to my E-mail letter a couple of years ago. He is really knowledgeble. He is called "Dizzy Doctor" in his area. Look at his webpage:

http://www.tchain.com/cv/hain-t.htm

Anna


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