Sharp Blue: Labyrinthitis comments, page 14

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I know I'm a bit late to your post, Sherry, but I'll chime in anyway. Your situation is pretty similar to mine. I had the initial sickness followed by vertigo/dizziness. The tinnitus came a little bit later when I was at my worst. The good news is that I am way, way better than I was at this time last year (no more dizziness). The crappy news is that I still have the tinnitus. Mine is only in my left ear. It's not ultra-loud or anything, but the pitch is so high that it's very annoying.

I wish I could tell you that my tinnitus went away, but I am holding out hope that it will some day. The important thing is to just ignore it for now and concentrate on actually living your life... easier said than done, I know.

My improvements have been erratic, but steadily better over the long haul. Not eating too much junk food and taking vitamins has certainly helped me out. If I had to put a number on it, I'd probably say I am about 90% there (higher on some days). If I didn't have the 24/7 tinnitus, then I'd feel like I'm normal again. That has got to be the most annoying thing to ever get and is a drain on me mentally at times.

I wonder how the other folks, like Gloria, on here are doing? I'm assuming since we haven't seen them around, then they are feeling good enough to go on living their lives. I'll check back every so often to post any updates I have.


Well I haven't had any change since the injection on Tuesday. I thought I was hearing a little more, but now I'm not convinced the injection did any good. I'm not dizzy anymore and have resumed driving again, but I still get lightheadedness constantly. I also now realized that I have tinnitus. That's a fun symptom/effect of this! I hear wind chimes in the distance, occassionally I hear water running and strange buzzing and I hear a constant ringing in my right ear. I am praying for at least the tinnitus to go away even if I don't get my hearing back...it's awful listening to this ringing all the time.


Hi all labbies,

Hoping everyone is well or keeping up the ladders. Sorry to hear that there are new sufferers on here, Lisa and Sherry. Your symptoms are typical of what we all suffer on here. Really hoping yours are not long term like many of us on here. Sherry and Lisa the tinitus is part of it due to the damgage to the ear. I am now learning to live and cope with this fairly well, would rather not have it of course, nearly two years on! I was speaking to my Doctor and he said he suffers with tinitus and that nothing can be done, just hopefully it goes at some point, fingers crossed for both of you. Just be strong and patience is key to coping with this illness. We all know at some point we will get better, hang on in there.

Binx, good to hear that you are doing ok. Your symptoms are so similar to what i have now, neck pain, tinitus, ear fullness, general unbalance. I too feel that slight depression hanging over me that wasnt there before. I do wonder if it is part of it or if it is due to fact that somehow we have lost part of our old lives and have had to adapt to this new way of life having to plan every trip out due to our labs. I find that the frustration is the worst of it as on a bad day get terrible anxiety that i am going back to the begining again, and yet i know i will have a couple of good days again, but sometimes the panic just sets in. Could go on forever about this crap.

B, how are you doing these days. Often read your posts, sounds like you are coping but would love to be a 100% again. Love to you and your daughter.

Claire, sorry to hear you were having a blip, ughhh hate this beast. Hope your girls are fine at least they can be a distraction, i know mine certainly keep my occupied.

Gemma, hope you are ok and still having good days, really hope soon we can say we are all fully recovered.

Gloria, where are you? Really hope it is a good sign that you have seen some improvement. Best wishes sent to you.

Sandie, glad that your 6th year is seeing an improvement, you deserve a medal for coping all this time.

To everyone else. love and best wishes,

Wendy XXX


Hello,

Just a check in. I've been taking the beta-blocker Propranolol for about 4 weeks now and am not sure I feel any different. I think some of the days have been easier, but don't we all have good ones and bad ones anyway? It is not a kind med, but it could be worse. The theory, I may have said before, is that this is migraine related. I thought I was done with migraines and my neuro saying this has been frustrating. She said that you can have them without the headache and just have dizziness. My other doc said he thought the dizziness may just be a perception........that is more annoying. All falls, days in bed, tears, frustration are not a perception AND the VNG I took at the Neruo was abnormal and showed the dizziness was coming from my brain. I feel like it also is coming from my ears. I have some great drs, but they still are not helping me and I don't think they can. I just want my life back. Anyway, sorry to go on and on. I still have my foggy brain, very off balance days, strained vision, stiff horrible muscles, I still fall sometimes, some tinnitus (it's never been that bad) and all the other things I'm forgetting. Much decreased from the beginning and some days I am fooled into believing I am all better. One day at a time...

Wendy, it is great to hear from you. You didn't really say how you are doing. How are your folks? Your girls keeping you on your toes. My daughter is great, all better and a senior in HS. That makes me cry some days because I just cannot believe it!! Love to you all too!

Lisa, I believe your hearing will return! I'm glad the dizziness has passed. My dentist had labs and he got all better!! There is no reason you won't get all better too!!!

Binx, it is slow, isn't it? You do so well. 100% for you soon!

Sherry, how are you doing these days? Any better? Keep us posted.

I keep wondering whatever happened to Lucy? She has not posted in so long. Hope you're hanging in there!!!

To everyone else, I wish us all good health and happiness!!

B


I am nineteen yrs old & DIZZY!!!

It all started with a lightheaded feeling, almost all day everyday. I thought i wasn't eating enough, or that i wasn't sleeping enough. So i started doing more of both and had no improvement. It became worse, and the off balance feelings started. I started worrying alot at this point. One day a full on vertigo attack started when i was in a public place, i felt spinning, dropping sensations & a bunch of HORRIBLE feelings. Scared me into a full on panic attack and a trip to the emergency room! I had a range of tests run on me, everything came back fine, was told it was "just anxiety" and sent home. Symptoms continued, by this point, im a total wreck. Finally, my doctor diagnoses me with labs. Said it should be gone in a few weeks. I am beyond frustrated, im nineteen, and i can barely do the things i used to do. My energy is low, walking is a challenge, it feels as if im trapped in my own body. No one understands, and as each day goes on, i just dread even getting out of bed. Coming across this site has given me some realy good insight. I don't feel so alone anymore. Although i haven't had this for a very long time, i feel very very bad for anyone that has to deal with this. Its awful!! Im wondering if it is normal with labs - to have a "relapse" of some sort? I initially had it for three weeks, and recovered fairly quickly. I had four weeks of symptom free bliss! but out of nowhere it has been back to square one, and i've been dizzy/off balance for four weeks now. This confuses me, is that normal? I also haven't experienced full on vertigo since the one incident, i experience swaying, dropping sensations, lightheadedness and dizzyness when i move around - but when i sit or lay down, barely any of those symptoms. BUT i do have fullness in my right ear and annoying ringing. Is that normal? I asked my doctor these questions and he didn't seem to know squat, just shrugged his shoulders and wrote me a perscription for SERC, which i find - does not help the least bit. Ugh :(

any insight or advice would be MUCH apreciated. sorry if this sounded like a long rant, im trying my hardest to stay positive! - Sarina


Hello Rich,

Thanks for the new page. That's speeded things up tremendously.

Cheers,

BINX1965

[No problem. I hadn’t realised quite how many comments there were on the old page! — Rich]


Sarina, It all sounds exactly like labs. Every little bit. Relapses are very common and you may just still be ill and healing. It is very common for it to go away in around 12 weeks. Keep your head up!!! As it goes it gets less and less from how it began. The full ear thing is very labbie too!! Don't lose hope!!!

B


Thanks for taking the time to read & reply.. Im hoping that this is a short term thing, i can't afford to take time off of work, and i have tons to do in school. Feels as if i've had to put my life on hold. Oh well, the positive - i've gained a new apretiation for good health and life in general.

I find that the first bit of the day i feel my best. When i wake up, most days, i am symptom free. I also find it strange that as the day goes on the funny feelings get stronger & stronger. I am gratefull for the good first part of the day, i continually remind myself that it could be worse.

Im wondering if people with this illness have multiple relapses? I fear that when and if i get better again, that ill just slide back into another relapse. It wasn't nice at all, being symptom free for an entire month & to have this return out of the blue one afternoon. I am crossing my fingers that it does not happen, again & again.

It's nice to have some answers, so - thankyou & i hope that i am a common case, that goes away within twelve weeks. Its tough, being nineteen and not having a soul around you understand what you are going through.

-Sarina


Hey everybody long time no comment, just wanted to say that after a long 9 month spree of labs, i have finally recoverd to 99%

I want to thank everybody for support on here you guys are AWESOME!

Sarina- Hey sorry to here that you are going through this i know its rough, and emotionally frustrating. I am also 19 and trust i didnt belive that Labs would go away. but stay strong and i will tell you what one moring it will just be gone for good! days and weeks will get better as you gone on. stay strong.


Two yrs with this and still suffering.....im in a bad patch right now...my anxiety is through the roof...will I be like this forever!!!!!!! :( Give me some hope people....Gloria Jemma Gary n Sandie....are the people that have been given me strength throught these two yrs...how have you guys been lately


Hi Wendy, thanks for your comments and yes definitely an improvement for me but not out of the woods yet. I note you are still feeling unbalanced - that is so very hard to cope with. Fortunately for me that symptom doesn't affect me too much now. The main problem is with wearing a heel, I can get away with an inch or so on a good day but that's about it. I have had to buy many new pairs of flatties when I have gone shopping wearing a heel and have not been able to walk properly. It doesn't always happen but my balance is TERRIBLE if it does.

I have been trying to get a new pair of boots and as I am a wide fit have been ordering from Next online. I then take back what I have purchased to a local store if I don't want them. I don't buy in store because they don't stock a great deal, especially wide fit. Anyway, I had five pairs of boots to take back over a period of a few days and I was telling the sales assistant the some of them were too high and then proceeded to tell her of my problem and she knew exactly what I was talking about as her sister has had the same condition for 10 years. So there's another one - there are so many people suffering with this now and still nothing is done to assist us and they claim that we are rare cases!

Sarina - poor you - so young to be coping with all this. Everything you have posted is typical of Labs and yes, you do have relapses. I have had many over the six years I have had it.

However, not everyone is the same and I do hope that you get over this soon and get on with living your life. Try and think positive and don't let it get the better of you. Talk to someone close and it will help you lots and get that person to look on this website and the link in the top right hand side of this page highlighted in red www.labyrinthitis.org.uk is a great site for information about this condition.

Take care

Sandie xx


Help....what do you guys do during the day when youre in a relapse.....i dont feel gooooood....should I just stay in bed...or try to keep going with normal routine....i feel like if I move alot Ill faint...ugggggghhhhhh I feel sooo down

Brad,

Just to let you know I've gone and got a blood test done for Lyme, my GP is going to get the Elisa and then the Western Blot test done if anything shows, up, will keep you posted.

Cheers,

Gary.


Update: Still no return on my hearing in my right ear. Not even a change with the steroid injection. Doc says we can continue with steroids or assume it's gone for good. I'm going to assume it's gone for good and move on with my life. My dizziness is gone, but I am lightheaded all the time. It's been a month since I started this relapse. I hope the lightheadedness goes away eventually like it did last time. My labs was dormant for 6 years before coming back and stealing 50% of my hearing. I am getting fitted for a hearing aid next week. Hopefully that will make my life a bit better. I'm only 32 and so disappointed to have single sided deafness to deal with the rest of my life. To make matters worse, my stupid insurance excludes all hearing devices...lucky me, I get to have labs and pay out of pocket for my hearing aid. Grrrr.

So happy to have found this website, I don't feel so alone with this crazy virus anymore. Although I'm not glad any of you have it either, just glad other people can understand what I go through daily.


Hello, to everyone, it's been a while since I posted. For those who are new to the site I have suffered with balance problems for the last 5 and 1/2 years, and at times like some of you have felt every emotion possible. Although I'm not cured, I am feeling able to cope with my balance problems and although there are things I would be uneasy doing I am able to get on with life. I walk daily and do pilates every week. Like many of you I have seen many ENT's over the time but this week I have just been discharched as I think we both knew there was nothing more they can do for me and it was pointless going back just to be told there is no operation or magic cure available. I was told that I have Vestibular damage, BPPV and Migraine related Vertigo, I do take Verapamil,and find that it does help. Love to you all Sue xx


I had a MRI of my ears and a CT scan of my ears and they all came out clear. I don't have any balance problems i never had balance problems from the start. It all started with this weird surreal vision like I'm high on drugs all the time! I'm really feeling down... even the caloric test and balance test came out perfect. The doc revered me to a eye doc to check if its maby something wrong with my eyes... but i told him i don't think eyes can create constant tinnitus... I'm so afraid i will have to live with this.. they can't even find what's going on. They all look surprised to see that i don't don't have any balance problems, but have the typical visual symptoms and tinnitus of someone who has labs. I do remember that when i went to the first aid to let them check my tonsillitis that the nurse gave me 10mg of oxazepam (which i never ever took in my live) and the next day i woke up with this... 3 days later i got Antibiotics erythromycin 2Grams totally a day and i later learned it could be ototoxic! But my doc said it's impossible to get Tinnitus 10 days after the last dose and impossible that oxazepam could have done this... because i don't have any hearing loss and i don't have any damage in the balance.. Do you guys think i might have a dysfunction in the central nervous system? It's almost 10 weeks and I'm so afraid this will never go... I heard of Migraine accosaited vertigo which can also give Tinnitus and constant sureallnes but i don't know if i have that. What's happening to me... how could my life be changed so dramatically. 10 weeks ago i was still outside driving and enjoying my life. I'm sorry if i sound emotional I'm just fed up with this. Did anyone ever get better?


Sue- when you say 5 1/2 years you freak me out.....i guess thats because im in a bad relapse right now. Are you able to work??? Thats my main concern...i still feel like I cant work and sometimes feel like I will never be able to work again.


Wow I cant believe im as scared as I was when all of this started. You would think that after 2 years I would not freak out like this...sorry guys but im in a real bad relapse :(


Sherry- The first time I had labs, I didn't have any balance issues, just lightheadedness and hot flash type episodes. It took 2 years for it all to go away. After 6 years of it being pretty much gone, I just had a relapse a month ago. This time it destroyed my hearing in my right ear, gave me tinnitis and tons of balance/lightheadedness issues. I think you could still have labs even tho you aren't having a ton of balance issues. In fact, right now I've been telling people that it feels like I'm drunk but in my right mind, so I understand when you say you feel like you are high on drugs all the time. I'm not sure there is a magic answer for you...just know that there are people out there who understand what you are going through. Hang in there!


Just thought I'd share that I'm finally used the the BP meds they gave me for migraine prevention and it only took 5 weeks!!! Geez. I don't know if it is helping for sure. I still am the same when I wake up, but the day seems to go a little better so who really knows. That's all. I'm afraid I'm in this boat long term. So bad want to be me again. I've been able to work a few more short shifts,2-3hrs, so that is good, but nowhere near where I need to be. I know everyone can relate. Hope others are having good progress. Lisa, I'm so sorry about your hearing. Don't give up hope.

Good thoughts to all!!! Have a great weekend.

B


I have had labyrinthitis for over 3 months now with no sign of improvement, i have two young children and find it hard to cope sometimes, its causing very bad headaches aswell as vision problems and feeling very disconnected. The ent doctor i saw doesn't think i need vrt as he said my life is active enough with young kids, i would be grateful for any thoughts or experiences about vrt and whether it helps


Hi everyone.

It's been a while since I stopped in. It's been 14 months for me now... and instead of seeing improvement, I've been feeling worse for the past 2 months or so. Not to discourage anyone.. but I'm just getting frustrated. Started VRT last week and have been feeling jittery since. I'm debating whether to go for the 2nd session. Please advice anyone.

My baby is 15 months and my son turned 4 on Sept. 1st. He started 4k this year..I want SO BADLY to feel better...don't know what I'm doing wrong.

I hope everyone else here is leaning more towards getting better everyday. Best wishes to everyone.

Kia (from Wisconsin, USA)


Got back from the Neurologist and this is the second one to tell me that she can't help me and did what she could. Don't have any inner ear damage or hearing damage, i dont have any balance problems, yet i do have tinnitus and i do feel spaced out all the time like i'm in a surreal world constantly feeling fullness in my left ear sometimes i can feel it throb for a few seconds. I'm really depressed its controling my life i never felt so depressed i got days where i just want it to end or sometimes im even thinking of ending it myself... what do i have what is going on with me.. what is causing all this... what virus came in my body and took away my life...


Hi Liana, so sorry to hear that you have suffered this for so long but thank you for your nice comments. This board really is a life saver for people with this condition. I'd had this nasty thing for a good few months before I found Sharp Blue and I honestly thought I had a brain tumour. The people on here helped me to realise that this wasn't true and it was so nice that I could speak to others on here. That is why I still pop in and see what's going on because I know how desperate I felt in those days! Please don't worry about not working - some people can and some people can't - I suppose it depends on how badly you suffer. I managed to work when my symptoms were milder but there is no way I could work when I was having my relapses. Lianna, you must not let this thing get the better of you. You must try and get out for a long walk every day, if you can't manage it on your own get someone to go with you. Hang onto them if you have to. You will feel so much better after a walk and you will be proud of yourself for having achieved it. When you are out don't just look at the ground which is what you will want to do, make sure you are moving your head and looking at things because this will help to recondition your brain. For me it was very hard back then because I could not look at a TV screen or read a newspaper/magazine because it would bring my symptoms on so I took up cross stitch and that filled in many an hour! I did some beautiful projects at that time. Try and keep active even though you feel light headed. I always felt like that and I had an awful feeling like I was going to fall over because my balance was all over the place but I never actually did. However, I have broken my toes three times over the last few years because I like to bounce off door frames! Liana look back to the first time you suffered with this and think about this relapse you are having now. Is it really as bad as that first time? I think you might find that it is not. Don't get me wrong I'm not saying that you should be able to cope better or anything like that but even though I can't work myself now because of this I always keep hold of the fact that it's never really been as bad as that first six months - I think I was actually in hell back then!

Lisa - I was offered the injections into my ears a couple of years back but decided against it. Is what you have had done the one where they put the grommets in first? I have a friend who had this procedure done last year but they only got as far as the grommet stage with her. He said he wasn't going to do the injections but didn't give her a reason why. I was thinking that maybe it was because it wasn't working with other people. I have never had any hearing loss so maybe it is something different that they are doing with you but I am so sorry that it has not worked for you.

Sue - it's lovely to hear from you. I think after me you are the longest sufferer on here? I must say that this last year has been my best since I started with VN but I still have bad days. I have had a lot of dizziness over the last couple of months and it still does control my life but you just have to get on with things don't you.

Sherry - you have to try and keep it together. Your CT scan and MRI were clear and that is normal with this condition. I wouldn't have an MRI or CT because I am a chicken but I had all the other tests and they were all clear. It is perfectly normal that all of the tests will come back clear for everyone who has this condition and to be honest I don't know why they even bother doing them! You are only ten weeks into this and you are wondering why you have no balance problems. Some people actually don't have them but I did and they didn't kick in for me until a good few months down the line. Even over the course of my own experience with this the balance problems have come and gone - I have gone from not being able to walk at all to being perfectly OK and then being back to square one on numerous occasions. Sherry don't forget that this thing is life limiting not life threatening. It's hell to deal with but you will get better and you will be a stronger person because of it.

B - well done that you are working - it's all a step in the right direction.

Take care everyone

Sandie xx

P.S. I now have a lovely grandson born last Wednesday. Little Mason is so beautiful. We've had a bit of a rough ride this weekend as his mummy has been quite ill but she's OK now so everything is hunky dory x


Kia I noticed i have kids the same age as yours, my daughter was 4 on sept 3rd and i have another girl aged 18 months, isn't this difficult coping with little ones! Poor you and everyone else here who have had this for so long, wishing you all the best and i would be interested to hear how your VRT goes Kia. Best wishes and congrats to Sandie for grandson Mason


Hello, again to everyone, Liana, I like Sandie did work part time when my dizziness first started and managed to keep going for a few years, but when I got the really bad problems which lasted for almost 2yrs I had to give up as I didn't want to keep letting people down. I now have family commitments that mean that I am unable to work,apart from a few hrs a week at school as a lunch time superviser. Sandie lovely to hear from you again, yes you are absolutely right about having to get on with things, when you have a family and a dog - that needs to go out, you don't have alot of options. I know there was many a day when I started to go out that I could easily have turned round and gone home, but after a short amount of walking I quite often felt better. I do do the looking up and down exercises and having my dog certainly helps alot. Lovely news about your grandson, I havn't got any grandchildren yet! Sherry poor you, could you be suffering from migraine related vertigo, as that makes you very spaced out and definitely depressed, I hope you get the correct help soon. Lisa, I was told that as I have 3 types of vertigo by curing 1 type it would cause the other 2 to get much worse, not an option I would like to take! Sarina, my heart goes out to you, you really should go back to the doctor, there really are things they can try, if it is positional vertigo then maybe an epley manoeuvre may help.At my worst I actually wrote a letter to my ENT specialist explaining exactly how all my symptoms made me feel, it was at that point that things did seem to happen and they ran more tests and seemed to take me seriously. Well thats about all. Take care everyone Sue xx


Well i've had this relapse of labs for just over a month now, and im back to working six hour shifts almost everyday at work. My first day back after was AWFULL. I was stumbling around like i was drunk out of my mind. So embarrasing. But i can walk straight now & am not so fatigued. I feel a tiny bit of improvement every week, or maybe im just getting used to it. WHO KNOWS. Im not so dizzy anymore, more unblanaced, the floor moves a little bit under my feet. I experience a marshmellow feet feeling when i walk, bothered me so much at first, not so much anymore. It could be worse, i am keeping a positive attitude, i haven't cried or complained all week. I want too, but instead i focus on things that i am gratefull for, ect.

When i wake up, my symptoms are not there. Its throughout the day that they start coming on. When i sleep to long, i wake up with the feelings of off balanceness right away, odd.

Anyways, i remember the first week or two of having this, going into any store, grocery store, ect. Made me a dizzy wreck! Really overwhleming, my hearing sooo sensitive too, loud noises, high pitched noises, & too many noises made me cringe! Eek! But i don't really have these problems anymore. I went into walmart the other day and felt fine, a little funny in the head if i turned to fast, but nothing like the weeks in the beggining. Does this mean im recovering!!?!?!?!?!?! I HOPE SO! i have an apoinment with an ENT in november. What are those like? I've only ever seen my family doctor, and he hasn't done anything to help me.

Hope everyone else suffering with this is doing alright, sorry if i sound really self centered. I don't get to vent to ANYONE in my life, no one understands, people assume that just because i look fine, i feel fine, and they barely care to ask me what im going through or listen. I do feel very alone in this, on the bad days (they are becoming fewer and farther apart - crossing my fingers!!) i always keep in mind that. "Through every dark night there is a bright day after that. So nomatter how hard it gets, stick your chest out, keep your head up & handle it"..

-Sarina


Sandie thanks for your reply...thinking back this relapse is almost as bad as it was when it started. I was doing sooo well I dont know what happend. I really hope it doesnt take 6 months to feel better like in the begining...over the two years ive had blips but nothing as bad as this one. Ok so my question to all of the long term sufferes....when was your last relapse n how long did it last??? And most importantly, did you take any meds during the relapse???? Or should I not take any meds because of the whole compensation deal......


I am SO SICK of doctors and their inability to understand. GRRRHHHH....

B


Hi guys

Have spent the last 2 years like most of you fellow sufferers with pretty much 99 percent of the symptoms on here. CT MRI VFT all clear, neurologists ent have no clue. I'm convinced its vestibular after going through all these peaks and troughs. My symptoms have settled quite a bit in that time. I'm now left with constant light headed, fuzzy swirling head - but my balance is now OK. What I have developed in the last few weeks after all this time is numbness, tingling, twitching in my arms legs and eye. Is this another classic symptom? Something new after all this time?

Cheers Tim


Alice, it's hard dealing with this illness with two active kids. My husband was supportive in the first 6 months.. but now he seems to think I'm just thinking too much. And that's not helping me. There are days when I feel like I'm getting better then the next day I'm feeling like a train wreck. I'm still working 40 hours a week..Thousands of dollars in med bills..although I'm trying to cut down one day a week. My supervisor will get back to me by end of this month.

Tim, I did feel the numbness, tingling, and twitching of my extremities for a good 6 months. But as of the past month or so, I have not feel them (knock on wood). I had it checked and one of the provider told me it's possibly fibromyalgia..but I'm also having pains everywhere else too. To tell you the truth, I was tolerating pain so well before this illness. I gave birth to my 2 children with no pain meds, no epidural, no IV. As of today, I don't think I can do that anymore.

Hope everyone get better, Kia


Sandie-no there were no grommets. It was a steroid injection that didn't work. They just numbed it up a bit and then injected the steroids. I was told I could do more, but it hurt so bad and didn't do anything to bring back my hearing, so I decided not to.

I'm in the process of trying to cope with the fact that my hearing is completely destroyed on my right side. I have also been told that my insurance won't pay for any sort of hearing device which is total BS! Right now I can't help but feel sorry for myself. It's hard not to let it get me down when my insurance takes away the only opportunity I would have to live a somewhat normal life.


Kia - Thanks for the response. I share your frustration I really do. I started with this Oct 2009 - about 2 months into a life change where I stopped working and went back to University full time. I can't tell you what struggle it has been writing, researching and staring at a computer all day.

After 2 years I thought I'd seen all the symptoms this thing had to offer. Does anyone think it unusual to be getting brand new symptoms like numb, tingling, twitching after 2 years?

My GP wants me to go back and have another MRI to track any changes but I think I've had just about enough of tests - everytime I go he talks about brain tumours and MS that scares teh hell out of me and is actually worse than the symptoms


Hi Alice

VRT - that's a hard one - some people swear by it - but I sincerely believe that keeping active is the best thing you can do. Especially walking. Get your kids in their buggy and walk, walk, walk. If you want to do VRT you can get it from the internet - it's all the same stuff as the ENT would give you.

Kia, you will get times when you feel better and then you will relapse again - this is typical of Labs/VN. Don't worry about that, you haven't done anything wrong. Viruses, colds etc will all keep this nasty condition going. Eat healthy, keep active and keep going! Positive thinking and not beating yourself up over this definitely helps.

Sherry, don't believe your ENT when they say you have no inner ear damage - there is no way they can tell because the inner ear is so deeply embedded in your head that they would have to do an autopsy after you were dead to get any info! All the tests they do are also non conclusive - most people have good results with those. I have been where you are now and you need to start positive thinking - you are not dying, your condition is not life threatening it does control your life but things could be a lot worse. Fuel your negative thinking into doing something - get out in the fresh air and look at stuff around you. You will learn to appreciate that life is actually wonderful. You might think I am talking rubbish but as you come out of this (and you will) this is how you will feel. Life is worth living and you shouldn't be having thoughts about ending it all and don't forget that all these negative feelings will get you more and more depressed and you end up in a vicious circle - so come on Sherry - positive thinking.

Sue - it was the same with me really. I gave up my job because I was relapsing all the time and I felt like a burden on my employers. I did love working and I do miss it but I must say that I haven't had a serious relapse since I gave up working so I would hate to start again and it all comes back in shedloads. I also have family commitments now. My hubby has problems with arthritis so I have to do EVERYTHING in our house and my mum has been diagnosed with alzheimers and though she does have my dad to do most of her care he is 75 so I help out a lot too. Then of course there is my new grandson .........

Sarina - you could be me - every symptom you describe is the way it was for me. I can still be noise sensitive but it's only now and again now! Glad to see you are adopting the positive thinking approach - it really works. People haven't got a clue what you are going through, they are like "oh I know what that feels like", and you are like "Well no you actually don't". There's many a time I have wished that someone could just suffer for a day and see what it's really like for us - maybe we could start with the ENT consultants! Speaking of ENT they will run a few tests on you but the results of those tests will probably be OK so you will come away thinking that there is something else wrong with you! There isn't! I chickened out of the caloric test where they put the air/water in your ears and make you very dizzy. The nurse doing it told me that whatever the results were I would end up with the same treatment (VRT) so why bother? I was so ill on the day I was having tests done anyway that i didn't need to feel worse. But don't worry about it all Sarina it's not so bad.

Liana - sorry to tell you this but my last relapse which was four years into VN was a good ten monther. That's when I decided not to go back to work. But having said that it wasn't as bad as my first experience with it. I had a couple of massive relapses before that and a couple of little blips too but then again there was never really a time when I was symptom free, it was always lurking about. Oh and I never took meds during that time. I have however, discovered Stugeron since then and I use that when I am going somewhere that is going to make me feel bad like shopping in the city centre or a concert!

B - like I have just said wouldn't you just love to give those doctors all of your symptoms just for a day LOL

Tim - sorry to hear you are still suffering after two years. I must say I have never had tingling or twitching in my arms or legs but I do get those feelings in my head.

Lisa - it's obviously different to what I was offered, it must have been so painful for you and then for it not to work. I feel so sorry that this has happened - is there no-one who can help you at all? Can you not get a hearing device on credit?

Take care everyone

Sandie x


Tim...I noticed your comment "numbness, tingling, twitching in my arms legs and eye. Is this another classic symptom? Something new after all this time?"

Please know that with your history of dizziness / labyrinthitis / vestibular issues the past 2 years, plus these new symptoms could all be related to lyme disease.

I suggest you look at some of my other posts. Many on here I think are ignoring them...but I encourage everyone to consider Lyme and related co-infections (particularly Babesia and Bartonella) as players in your conditions.

You've probably been tested for lyme and told you didn't have it. BIG DEAL. Are you aware the tests miss 9 out of 10 lyme cases? I originally tested negative and was told I had Labyrinthitis and anxiety. Meanwhile I had all of the twitching, tingling, numbness you describe.

MRI's of the brain are often normal with lyme. If they happen to be Abnormal, you often see MS-like Lesions and some atrophy. If your MRI was normal, I suggest getting a brain SPECT scan which shows brain function (as compared to an MRI which shows structure.) SPECT scans are very useful to detect lyme. Almost everyone has hypoperfusion (low blood flow) in the brain due to inflammation / swelling.

To reiterate..most doctors don't know squat about lyme. They will give you a standard blood test and if it is negative, will tell you you don't have it. If you do test positive, they will only treat you for 21 days typically which isn't enough.

YOu need to find an ILADS (www.ilads.org) trained LLMD (Lyme Literate MD.) They will likely give you a better test...a "Western Blot" from a lab called IGENEX (www.igenex.com). ONly an LLMD can properly rule out, or diagnose, lyme and related co-infections.

If you want to learn more, I suggest reading the following:

Dr Burrascano's Treatment Guidelines (The Bible of Lyme treatment...note the Symptoms a few pages in..how many do you have? (or have you had?) http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Also watch the Oscar-nominated film "Under Our Skin" about lyme. See patients like us describing what you describe..years of illness, no progress, cluless doctors, before finding out what the real problem was. Avaialbe for free on Hulu..also on Netflix and iTunes.

Tell you story on Lymenet (flash.lymenet.org Medical Questions.)

I've had every symptom you describe. I"ve been treating lyme for 18 months and am 95% recovered. My dizziness is gone, as is the tingling, etc.

Be well...


I managed to scrape up enough $ to put down on a hearing aid. I go in at 12:30 to have one programmed to try it out over the weekend. Hope it makes life more normal. I really hate not being able to hear on one side. I can't tell what direction any sound is coming from. I can't hear what people are saying to me half the time. I just want to move forward now and get back to my normal life.

As far as my vertigo, I found that just getting out and doing normal activities made it go away faster. I'm still dealing with some balance issues since my balance was completely destroyed on my right side, so my left side is learning to do all the work. I've been told it just takes time. So far, so good.

I agree with Brad with the Lymes disease. I've watched many medical mystery shows where the people have tested negative and then it ended up being Lymes. You are your own doctor, if something is wrong and your not convinced you've been diagnosed properly, find a doctor that will listen and do his/her job and find out what's really wrong.


I think my ability to concentrate has finally returned. I feel like I'm able to work to my full ability again. That feels great.

Got my temp hearing aid yesterday. It works pretty good. I am feeling somewhat normal today!

For those of you still suffering, it does get better...my first round took 2 years, but I had a great 6 year span with no symptoms...this time I'm recovering faster because I actually know what it is. Doctors do not know everything! I had one dr tell me I was making up the symptoms...I wish I remembered her name, cause I'd like to call her up and tell her, "I told you so!" Anyways...have a great weekend everyone.


Ignore my previous question. I have just done a quick search of the other pages and found hundreds of references to tingling, numbness etc. Feel a lot calmer about it now. This thing really does mess with your head - literally and figuratively even after all this time. Every time I get new symptoms it still feels like I go all the way back to the beginning.


Anyone else end up with permanent hearing loss from this wonderful virus?


Hi Everyone,

I'm now looking into cutting absolutely everything out of my diet that could possibly exacerbate my symptoms. One reason I'm doing this is that lately almost every time I go to a restaurant, I get a relapse. So I'm thinking that for me some of the worst symptoms, such as the nausea and headaches, could be because of hidden things in foods. I stopped eating the two biggest allergens, which are gluten and dairy, and now I suspect that the I am also allergic to most sauces they use in restaurants. I never used to be that way before labs, but I've read that autoimmune problems and food allergies can be suddenly triggered by a trauma, which I think labs counts as. Apparently 90% of people who stop eating gluten, dairy, msg, soy, and aspartame get rid of headaches forever. I never had headaches before, but since labs I have terrible cluster headaches and nausea nearly every day, made extremely worse when I eat out. So I'm trying to see if there's anything I can do diet-wise to feel better. The jury is still out on whether cutting out the gluten and dairy is working, but I'm almost 100% positive that hidden MSG in restaurant food (most will deny they use it, but it's in nearly everything you eat out under other names) is something I'm allergic too. I wonder if anyone else has also gotten sick eating out?

Binx, I'm jealous that you can have three good days in a row. I got this around the same time you did, and I've yet to have one day that's been good the whole way through!


Hello!

Is it normal that my labrynthitis came on gradually? I remember back in june of this year, getting small little dizzy spells when i looked up and down.. In the middle of august is when the constant lightheadedness started, not just with certain head movements. And than wam! veritgo, swaying, and all the other crap hit me at once one day. Does anyone know if that means my infection started in june? - when the positional dizzyness sometimes happened, or when it all hit me at once at the end of august??. Kind of a silly question but does that mean i have BPPV? Im on a slight mend now but still i notice that, when i move my head up and down i get a huge feeling of dizzies and false movement.

Ugh i just want to feel normal again, i miss my month of no symptoms whats so ever, i hope this passes soon. Relapses suck! Its bad enough that we have to deal with this to begin with, but that we get moments of normmalness and wam we go back to dizzzy and miserable, is really awful! feels never ending. I don't know how you longterm sufferers do it! Seriously, props to you guys for being so strong. I've only had this off and on for three months, i can't even imagine it going on longer. Woah. -Sarina


Yesterday I had my first 100% day since all this started. Not a single darn symptom. Top bannana. Slipped back a bit today to 95% as some tinittus and the odd feeling crept back - though this could be cos I fully pushed the boat out - I was fully engaged.

Anna - what did me in restaurants was not the food it was drinking fruit juices. As I have not had a drop of alco since this started I ended up swithching to fruit juices and the dreaded J2O drinks when out. Next day I would wake up with a crushing headache worse than any hangover and some ramped up symptoms. I thought it was what I was eating but it wasn't - it was the drinks. Tried it at home just to prove it. Citrus drinks appear to now be a big headache / migraine trigger for me. Great !

Stay safe everyone,

BINX1965


Thank you guys for all your wonderfull comments.

Binx1965 - Did u have a constant tinnitus? you said u were 100% symptom free for a day did that mean the tinnitus went away? How long are dealing with labs? So awsome to hear your recovering!


Binx, interesting about the fruit juices. I found this about citrus allergy on a site about herbal remedies: "Stress or trauma will cause the Adrenal Glands to burn up a great deal of Pantothenic Acid, which frequently results in the 'Citrus Allergy.' This can occur with mental and emotional stress."

So I had a little "aha" moment yesterday. You know the way doctors use labyrinthitis/ vestibular neuritis interchangeably? Well, I looked up causes for "regular" neuritis, and they seem related to what I have. People get neuritis when their bodies get too acid from eating the wrong foods or from stress, and the nerves get all tight and awful. My nerves are very painful and my muscles are like a brick wall. For regular neuritis they recommend lots of epsom salt baths and fruits and vegetables and drinking more water, all stuff I'm already doing which helps a lot.

But the big thing for me was the thing about the acidity. I know I had a prolonged period of terrible stress in my life a couple of years ago that felt like it was going to kill me, which involved some traveling and eating pretty badly, and I'm pretty sure I got adrenal burnout. So I'm wondering whether the extreme acidity in my body from my diet and the stress brought on this sudden crisis in which my inner ear stopped working. The night before this whole thing hit and landed me in the ER I had eaten out and drunk some cheap wine, plus I was dehydrated, possibly causing a crisis of acidity in my body that could have led to the vertigo.

And the other thing is, when you have any type of nerve damage, you are not going to tolerate foods very well that excite your nerves. MSG and aspartame are "excitotoxins" that can actually cause cell death by getting your nerves too excited, and gluten and casein (found in dairy) are "neurotoxins" which pretty much do the same thing. When you have vestibular neuritis, your nerves are already jangled, and you can't afford to be stirring things up more by taking nerve stimulants. So I think that's why I suddenly can't eat these foods, just as most of us can no longer drink alcohol.

So I finally put all of this together, and I'm thinking that if I can go on a totally alkaline anti-inflammatory diet that includes no nerve stimulants, (still have to give up the tea and sugar), and try to have no stress and make sure never to get dehydrated, it might help reverse some of the damage that's been done. I keep thinking of something my doctor said, which is that it's abnormal for the VN to have lasted this long (that was at four months). Most people seem to lick it in a month, so I'm thinking that for those of us that don't get better, there might be co-factors.

I'm very curious to find out if anyone else has noticed if their relapses are food-related. Binx noticed that citrus is a problem. Has anyone else noticed a connection between what they eat and their relapses? For me, restaurant food gives me a severe reaction, usually a sinus infection or an extreme headache or muscle aches with nausea, anywhere from instantly to 48 hours afterwards, and can last up to 5 days. At first I thought I was getting sick just from being over-stimulated by leaving the house and being too active, but then I noticed that when I go out and don't eat or drink anything I don't have these reactions.


Binx, wow a 100% day free of symptoms. What the heck does that feel like, wish i could remember!! Good for you. Are you back working yet? I would love to return to work but my biggest trigger is still flo lighting. Absolutley does my head in and most workplaces still use this. Think i will have to have a change of career, maybe an outside job or something.

Anna, i have had this labs thing for almost two years. I have found i can tolerate fruit juice but if i dont drink enough water i really feel the pressure in my ears go mad. Also foods high in salt really affect me, no more crisps! Cannot give up tea. I do replace it in the afternoons with herbal teas, but in the morning need that cuppa! Have given up coffee and alcohol completely and try to eat relatively healthly but we all need a break now and then. I find when i eat out in a restaurant again it is the lighting and the noise that sets me off rather than the food. When we are seated i have to look round where the lights are positioned, people must think we are mad! Never at the begining of this illness did i think how much my life would change Most days i try and carry on as normal but some days just want to scream out at the frustration that nobody who hasnt suffered with this would ever understand.

Sherry, i still have 24/7 tinitus, its annoying but i have embraced it as part of my life now! If i was just left with that and the unbalanced feeling would go away and the other symptoms that go with it i would be grateful. Hope you get some relief from this soon. It sure is a stubborn thing to go. Think our patients have been tested to the limits.

Good health to all,

Love

WendyXXXX


Wendy, lights make me crazy too. the other night my sister whom I haven't seen in ages got a free stretch limo and insisted that I ride in it with her to a nearby restaurant. She also insisted that I ride sideways to partake of the full bar, even though I've told her many times that I can't drink alcohol now. But with the weird lighting inside of that limo, and the space caving in, and with the feeling of being on a dark moving boat, I really thought I would die, even though the ride was only ten minutes. I stared straight ahead to try to ground myself, and she took this as an insult as if I was not appreciating being in the limo. By the time we got to the restaurant my nerves were really jangled, and I was severely nauseous. But then she and her boyfriend tried to push liquor on me again. Then when I reminded her once more that I can't drink alcohol, she told him a story of how I used to be a wild teenager that drank whiskey out of a flask, so he would not think I was uptight.

I swear, a lot of what makes this illness so difficult is that people don't believe you are ill and minimize it and treat you like a mental case, even more so because I try not to complain or to call attention to it. So I'll be suffering at an event with surreal waves of illness and awfulness, and people will say, "I thought you said you were sick," and I'll say, "I am, I feel terrible." But I'm smiling and trying to hide it, so they don't believe me. But then I'll get home and have a migraine and head and eye insanity and be flat on my back for two days because of those three hours out.

I now have almost everyone I know nodding with a skeptical expression or giving each other knowing glances when I try to explain why I can't work, as if I have suddenly become lazy and I'm making excuses. So I try to push myself to do more, thinking that maybe I'm coddling myself, and I always push up against my limitations VERY quickly and end up making myself worse. No one ever really believes that I'm sick except for my boyfriend who has to live with me and knows how I suffer. I'm sure others here can relate!

I'm actually hoping the food issue is key, because that would mean there is something I can do. Sometimes I almost despair of ever feeling normal again. I looked back to page 12 of this board and saw that nutritional problems did seem to be behind some peoples' attacks. One woman was eating only 400 calories a day when this hit, and I don't think that is a coincidence.


Anna - Yes, it's true, people are too skeptical when they can't see any physical symptoms. I even had a doc tell me I was making it up the first time around in 2003. I thought for a while that maybe I was crazy. Hang in there. Lisa


Hi Anna, your post with your description of what transpired between you and your sister broke my heart. Since there is nothing visible to show that there is something really wrong with you, it is hard for people to believe how debilitating this condition is. And as Lisa said, not even medical professionals believe us. There are only a handful of neurotologists , balance specialists, throughout the world, and very little research into this condition. Have you tried the migraine preventative diet? Many of us might have started out with inner ear issues that morphed into a continual state of hyperexcitability of neurons in the brainstem, i.e. a kind of migraine that is centered in the vestibular system. Some people have been able to bring this condition under control with the migraine preventative diet.


Hi, I came down with labyrinthitis about a year and a half ago. It was a severe case I couldn't function for three weeks straight and it took me a long time to finally somewhat recover. I have had ups and downs but this summer I was able to return to work and do things I thought would never be possible again. This last week I came down with a sore throat then it turned into a head cold. I am so dizzy. I was driving the other day and panic out of nowhere hit me the cars were bothering me and I felt like I needed to run away or something. I knew better and knew what it was but I still HATE those feelings. Could someone please give me advise as to what to do. I start a new job monday and I am not sure I will be able to drive myself there. I am of course upset but I need a quick fix by Monday(I know better than to ask that)I would appreciate any suggestions.


A rough week/weekend for me :( My dizzyness and inbalance started to become less and less severe over the past week. This made me sooo happy! Sadly i got tonsilitis in the middle of the week, didn't make my dizzy's worse at all!- thankfully. The doctor perscribed me Biaxan, an antibiotic to treat it. I developed severe tinnitus after a few days of taking it, i googled biaxan and found out that it can be ototoxic and can cause tinnitus!! OMG! Im freaked out, i stopped the antibiotics because my tinnitus is now so loud that i cannot sleep, i don't know if its my labs or if its the drug, but the fact that the tinnitus came when i had the antibiotics in my system makes me wonder. I really hope this resolves itself :( i am very tired, cranky and feeling hopeless. -Sarina


Hi Tina,

Thanks so much for your sympathy. The social thing really is hard. I'm trying to cut out most migraine-inducing foods, but also all neurotoxins, such as gluten and dairy. I think it's made a big difference. I've stopped doing VRT which I'm now thinking was a big mistake, so I'll be starting that again to see if it helps. I got so much better when I cut out the gluten that I didn't feel I needed to do VRT, but maybe if I do both that's the magic pill!

To Stacy and Sarina, my experience is that both of these things - diet and VRT - can make a huge difference. I've cut out most foods that are typical allergens, and added more fruits and vegetables. Also, drinking lots of water which relieves the pressure in the head, and epsom salt baths and massage, which can provide temporary but instant relief. And DEEP BREATHING, which floods oxygen to the cells and can help with dizziness.


For the people with tinnitus and labs, when did your tinnitus start? Did it start on day 1 or later on?

Hi everyone,

Just a quick status update. Feeling pretty good today. Tinnitus is pretty much my main issue now, although I do get fleeting moments of wooziness every now and again.

Anna - Yeah, gluten can be an issue for some people. I tried a GF diet for about a month, but it never really helped me in regards to this whole situation. As for VRT, I never have done any PT therapy for it... just my own "get out of the house" routines.

Binx - Glad you continue to improve. It sounds like you and I are in the same place. I'm not sure if we will all make it to 100% but I think we can get close enough to where it won't impact us anymore.

Sarina - Biaxin can be otoxic, but that's pretty rare. Have you taken it before? How are you feeling now?

Stacy - That sucks that you have this all over again. The only thing I can advise is to take care of your body as best you can. Follow Anna's advice and improve your diet + exercise.

How's everyone else doing? I hope everyone is continuing to feel better! Don't be a stranger here. ;)


Chuck Keller....how long have you had Labs now????

Liana,

I have had it for about 13 months now. It's nowhere near as bad as it was in the beginning as I stated earlier, and I feel I am well on my way back to being normal.

I tested positive for Lyme Disease and took a boatload of antibiotics, but honestly I don't know if they did anything for the dizziness. I was already improving long before I took any antibiotics, but I am glad I at least gave it a shot. The only remaining symptoms I currently have is 24/7 tinnitus + little spurts of wooziness from time-to-time. I think all of my symptoms are from residual damage to my inner ear from whatever infection caused it. That stuff is all getting better, but I fear I will probably be left with tinnitus.

How about you? You've been dealing with this for years now? Has it not gotten any better for you?

Sherry,

My tinnitus didn't start until the dizziness was at its peak which was a few weeks after all of this started. Once it started for me, though, it has never stopped. It's just a single note high-pitched squeal in my left ear.

Your story seems similar to mine regarding the tinnitus w/o hearing loss. I don't have hearing loss in the ranges that they test, because my tinnitus is at a higher frequency. I also had a clear MRI w/o any diagnosis from my neurologist. It was only when I went to a neurotologist that they found what appeared to be some minor damage in my left inner ear. As I'm sure you probably know by now, this can explain the tinnitus and balance/spacey issues.

Try not to let it bother you too much. Things will get better... it just takes time. I remember being so depressed that I was crying in my wife's arms almost daily in the first few months. I had all the fullness in my ear and everything too. The fullness totally faded away as the weeks passed, and I'm sure yours will too. Just hang in there!


Hi everyone, I am on my 17th week with this now (crossing off the weeks like in prison!) Is it normal to have terrible headaches and pain around the eyes? I wake up with it in my sleep. I never used to suffer with headaches. The worst though is being so cut off mentally from life, I feel like my IQ has dropped by 50%, anyone else feel that? Everything takes longer to do. Not sure whether to go to one of these neurotologists for a second opinion. My ENT doctor said it would take maximum several months to go and 'no one stays dizzy forever'... Anna, I was interested to read what you said about diet. My children have lots of allergies (nuts mainly) so I had a blood test for food allergy too and the doctor told me to stop dairy and gluten for a year, I am going to try it and see if it improves this condition too. Thanks Kia and Sandie for your last replies. Good luck everyone x


Hi everyone. I stumbled upon this blog and wanted to share my story if it might be of help for anyone. I'm so sorry for all of you are suffering from Labs and similar illnesses and symptoms. I know how awful it can be.

Labs started for me about 2-3 months ago. For the first two months I was miserable. I was lightheaded all the time and really couldn't get out of bed. I have the same doctor story as everyone else. No one really knew what to tell me, went through the MRI scan etc. etc. Finally my ENT said I had Labrynthitis and that it would go away within a month. I am in NYC and have made an appointment with a neurotologist who I will see this week. Hopefully that helps.

I wanted to suggest acupuncture to anyone who is desperate for relief. I started seeing one regularly and if anything it makes me symptoms go away for at least the rest of the day. The lady I see for acupuncture is also very determined to help me, always coming up with new resolutions and ways to feel better, which is a pretty nice feeling when you have seen doctor after doctor and they keep trying to push drugs on you that don't work and really have nothing else helpful to tell you. I was having regular migraines for a while and now after the acupuncture, I don't get them anymore.

One thing I have noticed though, as I start to "recover" and my symptoms become less predominant, my body is super sensitive to everything. Light, sound, touch, etc. My anxiety can be pretty bad sometimes and I become very emotional easily. It's pretty frustrating, esp. because when you have this "invisible" disease people already think you are crazy!


Sherry - My tinnitus started about 2 weeks after I got viral labs and hasn't improved at all since.


Chuck- Ive had this awful illness for two years now. After a year I defenetly started inproving. I was never 100% back to normal but I was doing alot more things that I couldnt do for a long time. As I started feeling better...i started going out more...then I started drinking alcohol...i drank n stayed up late for three days out of the week...until I relapsed. Its been 5 weeks since my relapse...and im tryin to take care of myself now and trying not to go crazy in this misery. I havent felt normal in two years but I much rather feel at 85-90% which was before the relapse than 30% when the relapse started and now 50%....sucks but I dont want to lose hope. Any advice will be apreciated chuck :) (i still smile even if its sometimes hard)


Alice,

II never had headaches before either, but now I have awful ones nearly daily. I also feel I have lost half of my intelligence, and I especially have problems remembering what I am supposed to do and planning things. I've had this now for 10 months, and it's much better than before, but still pretty bad most days.

About the diet: I've been studying alternative medicine, nutrition, etc., like mad on the internet since thing thing started, since the doctors have been very unhelpful and I am desperate to find a cure. My head MRI cam back abnormal with lots of spots on my brain. I researched and found that gluten intolerance can cause those spots (and the attendant multiple sclerosis that I dread getting and that I am a candidate for), so that's when I cut out gluten and also dairy. I'm positive that that's made a difference. Gluten is also supposed to be a headache trigger in many people, and I think it's helped with the headaches too. Of course the neurologist never mentioned any of this. I've more or less given up on traditional doctors.

I feel like a period of abnormal stress followed by a period of bad diet while traveling set me up to get this virus. I have a feeling that people with normal immune systems don't get their ears destroyed like this. That's just my theory. So I'm looking into things people do when they are desperate to regain their health, and trying to do all those things. So I tried an elimination diet, and found that most of the things people are allergic to are things I don't even care to reintroduce, as I feel healthier without them (except I've added back eggs and nuts, and small amounts of chocolate). One thing that was interesting is that pretty much the instant I gave up gluten I started sleeping really well, and my blood sugar normalized.

Also, I've read that it's possible that the virus that attacks the inner ear is actually a form of herpes virus (simplex or chicken pox). I remember that two or three nights before the labs struck, I felt like I might be getting a cold sore, and took acyclovir. I didn't get the cold sore, but I got the labs. So I wondered if taking the acyclovir caused me to get a cold sore instead near my BRAIN? And I wondered if my eating things that weakened my body, such as gluten, sugar, and wine, may have weakened my body to the extent that the virus would attack, and if relapses are due to the "cold sore" in my inner ear coming back because of stress and careless diet? In any case I have constant colds and am always congested, so it's clear that some sort of virus is always trying to take over.

The new theory out there is that viruses cause EVERYTHING - cancer, autoimmune disorders, etc. Autoimmune disorders are beginning to be understood as attacks against viruses that have infiltrated one's own tissue, so that the body is willing to attack its own cells to kill the virus. The scary thing about gluten is that the body sometimes recognizes it as a virus and mounts an autoimmune attack against it, which is preferable to letting it destroy the brain, which it WILL do in gluten intolerant people.

Anna - I do massages instead of acupuncture, and they have helped tremendously. I did acupuncture once and it wasn't as strong for me as the massage. But if I could afford it, I would do both. Epsom salt baths really help too to get rid of toxins. I still feel so riddled with virus!!


Hi Anna B, thanks for all that info. I am sorry to hear you had an abnormal MRI, I can only imagine the stress of that ontop of having to deal with this illness. I agree that nutrition must play a role in recovery from this, I am sure that eating foods that cause an inflammatory response can only make one feel worse. I also think finding a way to cope with the psychological side of it is important. At the moment I am feeling pretty worn down by it all, it's quite draining to deal with day in day out and it's frustrating that most people do not understand how it feels. Anna, I tried acupuncture too but it didn't seem to work but I have read a lot of people have had good results. I am wondering about head massage to relieve headaches. I seem to be getting migraines once a month that then last for about a week and bring the dizziness back to day one. I am hoping that I don't now have a migraine disorder and that this is just part of the same condition. I am going to make an appt with a neurotologist in London as I feel no better after four months. Good luck everyone x

Liana That stinks. I can't imagine having this crap come back. How did yours start off the first time? What happened to make you think it's a relapse?

Unfortunately, I am not a really good advice giver. The only thing I can say is to take care of yourself. Try not to drink as much (if ever) and definitely get some sleep. I know how easy it is to get complacent with this crap. Especially when you are feeling 90% or so all the time. I don't know... I just treat it like I've got a second chance at life with my health even thought I am still recovering. I used to treat my body like crap (staying up late, fast food, etc.). Fortunately for me, I rarely if ever drink, so that's never been an issue. We really tend to take our health for granted sometimes, so it can be a good thing to regain some perspective on this from time-to-time. It will get better for you! Just concentrate on the good things and take care of your body while it is healing.

Anna All the stuff you say sounds very familiar to the Lyme community. Some people there tend to blame nearly everything on Lyme Disease and like to think that almost everyone has it. I don't put too much stock into the extremist's views on it, to be honest. There are so many unknowns about viruses and bacteria that people are studying every day. It's entirely possible that all of this crap could be caused by these things, but there's no definitive proof in either side of the camp. IMHO, it seems like my inner ear is just damaged. I have never had any other symptoms and it's been a slow improvement ever since the original vertigo. Obviously it's not the same for everyone, but I feel that it fits my case. I am just doing what I can to live my life now, and honestly, it's not awful. If I didn't have the tinnitus, I'd probably never be on these boards. :) I had two MRIs and both were clear, and I never really have headaches often at all.

Massages help me too. I even went and got a facial once and that felt pretty good. Epsom Salt baths or baths of any kind, really, always make me feel better.


Hi everyone again, a quick question? Has anyone been told by a specialist whether lack of sleep interferes with the brains ability to compensate for damage to the vestibular nerve? I am just wondering as I get little sleep with my kids but my ENT dr said it would not have an impact on compensation, it would just make me feel worse. However i just read an interview on the BBC online with a neurotologist talking about labs and she says lack of sleep can prevent the brain compensating for the damage and sleep is therefore important for recovery (interesting interview with her, she is called rosalyn davies) This could be a good reason to get my husband to do the nights!!


Chuck, the view that labs is caused by a virus or bacteria is the mainstream view, not an extreme one. And it makes sense that if you're wrecking your body through poor diet, poor stress management, lack of sleep, food allergies, overload of toxins, etc., that you are more of a candidate for disease to take over than a person who is taking care of their health. For me, it took getting an abnormal MRI to think about changing my diet. I just couldn't accept the fact that now I have a one in three chance of contracting MS in the next couple of years, and there's nothing they can do about it. And I have a feeling that some of my ataxia is due to those brain lesions. From what I read, nearly everyone who gets MS improves dramatically when they eliminate things like gluten. People with migraines too, and a number of other illnesses. I don't think it's far-fetched to think that the chemicals in food and its crappy over-engineered fakeness are finally starting to kill us. The doctors say there is no connection between my MRI and my labs. But of course they're connected! Your whole body doesn't just start falling apart for no reason like that. I'm relatively young, and have always been healthy. But I can feel my body being overtaken by viruses, and I know I'm not imagining things. It started with allergies, sinus problems, then came labs, headaches, then ataxia, neurological problems, constant colds and sore throats, and on and on. I just can't afford to disregard diet or anything else at this point.

They say gluten is a neurotoxin, but I didn't really believe it until my sleep drastically improved when I went off it. That proves that it was affecting my brain in some powerful way. And the last aha moment was when I realized that hidden MSG in restaurant food was making me very ill. HUGE improvements in how I feel since I started being careful about that. And you know what, EVERYONE is allergic to MSG, and will eventually become sick if they eat too much of it or over time. And nearly ALL restaurants put it in their food, although they may not realize it. But if you're sick you have to be especially careful. Apparently Taurine binds the free glutamates in MSG so that your body can process it, so when I eat out now I take a Taurine vitamin, and now I don't get violently ill in restaurants. But I feel best when I avoid restaurants all together, except for organic ones. I agree that the Lyme people can be extreme though and imagine that everything is Lyme. One thing that struck me too about the Lyme treatment is that people are being told to severely limit their intake of refined carbs (most of which contain gluten), and sugar. Could that be one reason they improve?? What if it's really because they're being forced to come off junk food??


I finished the Biaxin, tonsilitis is gone & titinus too. But unfortunantly, the dizzyness and off balancedness is awfull! I had an almost complete symptom free week last week and over the weekend everything came back. I don't think i did anything wrong, i've completely quit drinking alcohol EVER since this began in august, get good sleeps, take vitamins and keep as active as possible. I wish i knew what causes the relapses & i really wish doctors were alot more helpfull and knowlagable with this. I have my very first ENT apointment in just over two weeks. Agh, another scarey thing, yesterday i started getting full on vertigo spins, which i have never experienced. AHHHH i don't understand why this thing gets better than alot worse than better than more worse, and why is it taking forever to go away, i want my life back SO bad. SO FRUSTRATED!

Anna,

Sorry, I see what I wrote and how I made it confusing. I'll try to clarify. I don't doubt at all that Labs is caused by a virus or bacteria. What I meant was the view that the continued issues that we still have months/years later are still due to an active virus or bacteria. That's what is lacking any kind of proof. That's why I said I feel, for me, it's just damage leftover from an ear infection, be it Lyme or whatever.

I agree with everything that you said regarding poor diet, stress, etc. causing a crappy immune system and that's why we got sick in the first place. Yeah, it's amazing how much the food we eat affects us. I was the poster child for crappy sleep, crappy diet, and crappy exercise. Just crap all around, I guess. ;)

I do think that many of the Lyme community who are sick for years recover for reasons other than taking years of antibiotics. The life changes that most of them make are most likely a significant factor. I don't know for sure, though, and honestly no one does.


Chuck- well from what I remember it started slow...i was dizzy n off balance one day so I stayed in bed n the next day I was fine. A month later the same thing happened except it lasted bout three days but very mild. Then a few weeks later it happened again n stayed for good. A few days after it started I got rotating vertigo for a few seconds which felt eternal but that was it.....after that it was offbalanceness n dizziness. Oh n by the way...i had real bad tinnitus...which after a year got better but was still there...now at two years its pretty much gone

You ask what makes me think its a relapse? Weeeell....what else could it be if I was doing so well then went back down like at the begining. I wasnt taking care of myself and I was drinking too much...which I believe made me decompansate....idk...thats my guess...with this illness I dont even now what to think anymore


Anyone have complete hearing loss and tinnitus that went away after a few months? I'm still hoping I'll get my hearing back and the tinnitus will go away. :(


Or we just recover one day because that nerve heals. That's what I'm hoping for. I hope we all just heal one day.


Does anyone have increased eye floaters? Also can you guys manipulate your tinnituss by moving your jaw left or right? Or yawning? Or moving your head to the far left or far right?


Thank you very much everyone for the comments!

Do all of you feel spaced out all the time? Like the world is surreal all the time?


Hi Chuck, thanks for clarifying that for me. You're right, there's no way of knowing whether we still have active viruses or bacteria months or years later. But when we eat poorly and expose ourselves to toxins and foods we're allergic to, the balance of flora (bacteria) can get upset in our bodies, allowing us to be susceptible to disease (viruses).

Liana: I was so sure it was the wine I drank the night before (sulfites) that caused my labs, which was extreme. I had also eaten at a restaurant where I ingested a lot of gluten and probably a lot of MSG. The doctor insisted that two glasses of wine could not possibly have caused my inner ear to die, but reading up on it, if you're drinking certain cheap wine that contains a lot of sulfites (as I was that night), you can get REALLY sick, as you also can if you ingest a lot of MSG in one meal. I've read stories recently where people who drank two diet sodas or ate at a Chinese restaurant went into a coma. And the same thing can happen with sulfites if you're sensitive to them.

I didn't know until I did the elimination diet that I was allergic to MSG. You have to eliminate all the potential allergic foods all at one time to resensitize your body to what's actually making it sick. After a month of en elimination diet, in which I cooked most of my food at home, I started getting violently ill in restaurants. So now my body is at least well enough to tell me what I'm ingesting that it doesn't want. Before that I was just sick all the time day and night, and I wasn't connecting it with food. But yeah, I would say it's a relapse due to you being less careful with your diet. Or maybe it's something else, who knows. But I think we know our own bodies, and if you think it was the alcohol, it probably was!


Hi folks:

So..I'm back for my recurring pestering. I don't consider myself as a "lyme extremist" as Chuck describes. But I am "lyme experienced" based on my own battles / issues.

For those of you who dont know me, you can read my story beginning April 2010 on page 12.

I was originally misdiagnosed by my ENT with Labyrinthitis after all tests, including blood tests for lyme, were normal. Yet I was having weird symptoms, with a dizzy, off-balanced feeling being the worst. It seemed to fit the Labs description. But, I also had brain fog , memory issues, felt spaced out at times, tinnitus, ear pressure, floaters in my vision, and just an overall dumb feeling.

I was desperate and found my way to an alternative doctor who gave me an IGENEX western blot test and it was highly positive for lyme. Subsequent MRIs of my Brain showed I had 2 lesions. A follow up Brain SPECT scan showed massive areas of low blood flow due to inflammation / infection from lyme and related tick-borne co-infections.

Most regular doctors dont know squat about lyme and will say it can be treated with 2-4 weeks of antibiotics. NOT TRUE.

So here is my advice for those interested:

Anna B.: You mention having memory issues, intelligence issues, and spots on your brain on your MRI. This is along with the dizziness / tinnitus. Well..I had ALL of these and they are pretty much ALL gone now with proper lyme treatment. My last Brain MRI was completely normal. But mind you it took me time to get here. Ive been on high doses of multiple antibiotics and supplement for 18 months. Chuck is more skeptical than I ambut for me, you can clearly see my MRI before and after. John Hopkins University has shown how lyme can cause Labyrinthitis, BTW.

Sherry: Ditto to your symptoms. I had the bad, detached, spaced out feeling (very common with lyme). The surreal feeling is called depersonalization or Derealization. When I had it, it seemed as if I was sitting inside my head, looking out at the world through my eyes. Not fun. I also can manipulate my tinnitus up or down depending on my jaw position. Again, the mental stuff is now gone. I still have a wee bit of tinnitus, but it is better.

I agree with Chuck. Not everyone on here has lyme. Clearly that isnt the case. ButI do believe some of you do, particularly ones who are describing vision, memory, CNS issues (tingling, etc). Sweating, GI issues, headaches, etc, are also hallmarks of lyme.

Just a precaution that lyme is very controversial. The mainstream view is that it is easy to detect and treat and most docs will deny that it can do what Im describing. But there is a rapidly growing group of doctors / researchers who believe lyme is much more common, causing much more severe illness that is much more difficult to eradicate. This is the ILADS group www.ilads.org

Want to learn more:

-Check out lymenet. http://flash.lymenet.org Tell your story. See how many people describe your symptoms exactly.

-Watch the 2009 documentary, Under Our Skin (google it.) Free on Hulu and also on Netflix. Explains the whole controversy.

-Download and read / study Burrascanos treatment guidelines. A few years old now, but regarded as the Bible of lyme treatment.

Ive been in treatment for 18 months, but Im 90+% back to my old self with only a few minor symptoms remaining which we believe are due to 2 tick-borne co-infections (Babesia and Bartonella.). But the dizziness is gone. The mental stuff is gone. My MRI is now clear, etc, etc.

If youve been suffering from Labs like symptoms for months, shouldnt you rule out lyme? Only an ILADS trained LLMD can do this. Regular docs are useless. (they told me my symptoms were in my head and due to stress / depression / anxiety. WRONG!!)


Yes permanent feeling of being spaced out, disconnected from everyone, I actually sat down on a strangers lap on a park bench yesterday, I must have seemed like a nutter, that's how spaced out!

Anna B, Those white lesions on the MRI can also indicate migraines, not necessarily MS. I think that food allergies, extreme stress, hormonal fluctuations, or some hidden fungal, viral or bacterial infection can instigate a neuro-chemical/electrical mess up that causes the symptoms of brain fog, headache, dizziness, and even ataxia.

Lianna Ugh... that sucks that it hasn't gone away yet. That's pretty much exactly what happened with mine. I got sick, experienced brief but awful vertigo, the tinnitus, then residual imbalance. the imbalance has gotten much better, though, except the tinnitus has pretty much stayed the same. Some days appear to be better than others with it. At least it does sound like certain things are ultimately improving (your tinnitus, for one). I hope mine fades in time as well.

Brad Yeah, I don't mean to contradict anything you've said on here at all. I think it's a good idea for anyone to get checked out after a while. I just took all sorts of meds (antibiotics/antimalarials) for so long without any real attributable improvement in my case. I never had any other symptoms other than this labs crap and still don't. But if the meds worked for me, I would still be taking them. I've been off them for a few months, so I'll see how I feel in another few months or so.

Sherry I used to feel spaced out pretty much constantly. It was awful. It took months for that to subside to a tolerable level. It really sucks that the inner ear isn't easily diagnosed or treated.

I guess those on this board are part of the unlucky few that were stuck with this damage. The only part that keeps me going is the fact that people do eventually stop posting here. I don't know if that means they got better, but I would like to think that's the case. At the very least things got to a level where it didn't impact their life much anymore. All we can do is lean on each other as we let our body heal from this mess.


Hi brad, I thought the info on lymes was interesting thanks. I am wondering if your ENT doctor diagnosed you with labs initially on the basis of any tests, did you have a positive result on the caloric test? I am interested if you can have damage to the vestibular nerve which is caused by lymes and therefore a positive result on ENT tests or does a positive result exclude the possibility of lymes? I think a lot of people here have had a definitive diagnosis of labs or vn based on ENT tests and therefore I am assuming they don't need to consider lymes? I have dizziness, headches pins and needles etc and also live in an area where there is lymes but as I had a positive result from ENT tests to VN and a clear MRI (although in v early stages), I imagine I dont have to be thinking of lymes, let me know if I have this wrong tx


Hello everyone, not been around in a while so thought I would give a quick update.

Just got back from seeing the specialist AudioVestibular MD in Nottingham.

To be brief:

This person rubbished everyone I had seen before and said I had been constantly fobbed off (her exact words) - not just by the poor consultants I have seen (at other hospitals) but even my own GP.

Some basic tests carried out (the usual). The interesting one where you march on the spot with your eyes closed and arms extended. In 30 secs I had taken a 45 degree turn to the left. All the balance tests I was going to the left.

Handed in my list of symptoms from the start - which she went through in detail. Also asked loads of questions about the symptoms. Ordered a raft of bloods to be taken - 6 test tubes full was my count. Said to me it had been that long that whatever I started with had gone (Labs / VN ?) and I was now dealing with the migrainous aftershock. Apparently the migraine junk (with or without headache) is in her experience a common follow on from VN. The Labs / VN had long since gone and it was the migraine element now causing the residual symptoms. Anti migraine drugs (PITZOFTEN 500 microgram 1 per day for 6 weeks then 2 per day) prescribed to which she said - if these are no good after 3 days ring me up and we will sort something else pronto. If all looks good I will see you back here in 3 months. Final words - I will get you back to 100% or so near you won't know the difference. To support the meds I have also hit the migraine diet.

Prior to this diagnosis I would be anywhere between 80 - 100% on any given day. I have actually been at 100% on a few occassions.

Anyway, we shall see.

I intend to visit my GP in the morning and blow like a volcano. Big thanks to Paddy Blak (a poster on one of the other forums) for my attitude adjustment towards the medical profession. We would have been left to rot had we not taken matters seriously into our own hands.

As always - I will keep you (my dizzy off balance comrades) updated.

Now going to check the back posts and see what you have all been upto.

Stay safe,(as always)

BINX1965


Alice:

I had the battery of vestibular tests by my ENT at the beginning. All were more or less normal other than having a weakness in my left ear by a certain percentage. The ENT didn't know what was causing my symptoms. He didn't think it was Menieres based on my test results, so opted on Labs and "dismissed" me. My blood test for Lyme (an ELISA) was negative.

Binx: I also had the same turning while marching with arms out / eyes closed. Just sayin. Most lyme folks don't buy the whole migraine thing. What is the ROOT of it?

Chuck: Yes your and my experiences have been a bit different. We both tested positive, but I had a slew of other symptoms, the abnormal MRI, SPECT, all of which have improved with treatment. I'm going after Bartonella in 2 weeks so I'll let you know how that turns out. I don't think you treated Bart.

BTW..I forgot to copy the link to Burrascano's lyme guidelines. A good read. Note the symptoms. How many do YOU have??

http://www.lymenet.org/BurrGuide200810.pdf


Hey, Binx, I too am being treated for migraines and taking a med. It hasn't been the cure all, but I think it has improved me somewhat. My neuro said she wants me to try others if this is not the answer. She never promised %100, but she did say there has been good results with others. I hope you get there fast. I'll be thinking the good thoughts.

B


Hi binx, I am convinced I have the same problem as you as two months into labs I started getting headaches from hell that increase the dizziness and set me back to day one. My ENT dr just looked blank when I mentioned headches and just said it's all part of the same condition and then discharged me. I only have paracetamol to take as allergic to aspirin and this does nothing. How long have you had headaches for? I keep wanting to make an appt with the same type of specialist you went to but i would have to fly to london and leave the kids behind and I worry I will be told to go away and get better like my ENT dr said. I have had this for over four months and keep hoping that in a month it will be gone....


Alice, keep searching for the right Dr. There is a migraine headache med called imitrex and I used to use it in injection form. Ask your doc. I don't know about in Europe, but they should have a similar one available. I know how awful migraines are and how much relief is needed. I take a beta blocker for prevention and there are a few different ones beside them that are suggested for prevention. I wish you the best of luck.

B


Thanks very much B for your message, I never realised how debilitating migraines could be, it sounds like you have had them for a while, I am going to try and get better medical help. We moved to a village in Switzerland from the UK earlier this year and then I got labyrinthitis, bad timing, I am just not finding any specialists in this area so may have to make an appointment back home.


Binx, that's so interesting about the "migrainous aftershock." That's sure what it feels like. And it explains why I would suddenly not be able to eat all of these foods I used to enjoy without getting a vestibular migraine, especially restaurant food. I have cut out all migraine-inducing foods now except for tea and occasional chocolate. I remember that you posted a list of all your symptoms awhile back, and I have all the same symptoms as you so I'm assuming we have the same disorder/ aftershock/ whatever it is. Good luck, and let us all know your progress!


Alice, I got my first migraine when I was 11 and it was horrible, especially the aura. I was careful with foods and caffeine back then, but it never changed a thing. I still got them and we now think that they have always been related to hormones and, really, so much is. I have not had them in quite a long time since hormone meds...but the neuro thinks it has something to do with the dizziness. I hate it, as we all do. I can't wait for it to go away. It seems ever time my body gets stressed, sick, or hurt it exacerbates the labs symptoms somewhat. Ya just can't win. Have a great day!

B


Hey, I still can't believe this inner ear thing lasts so long, i really wish it was "just a few weeks" like i originally was told, but don't we all? And the recovery process, so not normal! Whenever i begin to feel like im "recovering", every symptom comes back & takes weeks to settle down. Anyone else experience that? Certain head movements give me an intense feeling of false motion, that lasts just a few seconds. I wonder if i have bppv ontop of labs? or something? What the heck. This thing is really starting to put a huge damper on my life, i think my family, job, boyfriend & even my close friends have kind of distanced themselves from me and im starting to really become isolated and lonely. I get asked so much "You've been like this for months, shouldn't you be better?" or i hear, "your nineteen, you should be having fun & this and that". THOSE comments just make me more frustrated, its like "hello people i understand that! but clearly i cannot just snap my fingers & be my old self!" although that would be really nice.

my BIGGEST question, Has anyone actually gotten completely better & over this?!!?!

I really hope this month is a month of getting better for all of us, or of some serious improvement. You all are so strong! Thanks for taking the time to read, and i would greatly apreciate some feedback or insight. -Sarina

[I completely recovered and have never had a relapse — Rich]


Hello everyone,

Looks like the migraine pills are working. Give it a while longer though before I can confirm 100%. That said, on a dull overcast rainy day like today my symptoms would have been at their worst. 3 days of migraine meds and I am still functioning normally. Anyone who has gone over 16 weeks with the Labs / VN junk may want to question their doc about a migraine variant follow on. The consultant I saw last week indicated that this can be quite common particularly after VN and BPPV. All the consultants I have seen up until last Tues have been full-on wasters (I can think of some other words but they are not suitable for this forum) and would have just left me to rot. Even the last signs of anxiety have disappeared - just by taking a few 0.5mg migraine tabs. My current consultant is not leaving it at that though and is now checking for any other underling causes - as Brad says the migraine is only a symptom. Lets see what happens next.

Stay safe,

BINX1965

Sarina - Stay strong. I'm feeling pretty damn good today, and I try to ignore the fleeting symptoms a bit and live my life. You will get better... it might take a year or two, but it will happen. You may not make it to 100% normal feeling, but you will feel good enough to go on living without even thinking about it anymore.

Like I said, I feel good today, but I know I will go back down a bit at some point. The good thing is that I am learning to ignore those moments. Each subsequent "down" is more an more insignificant as times goes on. I was freaking miserable a year ago when this crap first started.

Binx That's great. Keep it going. Sometimes those migraine drugs work as anti-depressants/anxiety medications. Heck, they even prescribe SSRIs for migraines sometimes and they do work for some people. Whatever makes you feel good, keep doing it.

B, Anna, Alice, and everyone else. Keep on keeping on! We will all get better and get our lives back. Hope you all have a great rest-of-the-weekend!!


Hope everyone had a good weekend.

Binx - You must feel relieved you finally saw a good doctor, I hope your treatment gets you back to normal. I am starting to wonder why so many doctors are so badly informed about this condition especially the ENT doctors, you would think they would know!

B - my headaches seem to be hormonal too as I get them every month and they seem to go on for two weeks. I have had pins and needles for months, my GP said it may have been caused by an allergy to betaserc which i took for labs but the ENT dr said it could be stress, however I have now read that pins and needles can be linked to migraine so now wondering if its that, anyone else having these sensations?

Sarina - this is a really nasty condition but everything I have read or been told says that nearly everyone recovers. Being positive is really important although that is a challenge in itself, you have to sit down with some close friends or family and explain how you feel, if you google 'labyrinthitis NHS' you should find a video of a girl called Rebecca describing her symptoms, if people cannot understand your condition then show them this, it certainly got through to my husband! Good luck!


Sarina-I am out about 2 months from diagnosis of Labs and still have the sensations of false movement, especially when I tip my head back. Also bending over causes it too. I also have 100% permanent hearing loss in my right ear along with horrible tinnitus in my right ear. I keep praying that a miracle will come about and my hearing will come back and the tinnitus will go away. Most likely it will not. So heartbreaking that all of this is caused by a virus! I can actually walk straight now and I don't lose my balance nearly as often. I was told that the balance issues will eventually go away and the best way to get rid of them is to not let them rule your life, get out and live normally, then your balance will slowly return. That's of course easier said than done. When I first returned to work, I am sure some people thought I was drinking at work since I could hardly walk straight and stumbled around a lot. :( I hope you continue to improve as I have and do not have any permanent repercussions like I do.


Hi all!

I doubt anyone remembers me, but I posted here about a year or so ago and thought maybe it was time for an update.

My vertigo began in June 0f 2009. I have been to every kind of doctor imaginable and have received the same multitude of diagnoses that most of you have... but from reading and putting together information I finally came up with my own answers.

I have a constant lightheaded/fuzzy headed feeling exacerbated by head movement. This has improved somewhat over the two and a half years since this started. At the very beginning of all this I did have BPPV (positional vertigo) as well which was causing vertigo. The Epley took care of the vertigo, but not the residual dizziness. Since the start I've probably had 2-3 more bouts of BBPV.

Another strange symptom - the day all of this started I developed a large "floater" in my left eye which is still clearly visible to me.

Based on all this I came to the conclusion that I have vestibular neuritis (brought on likely be a virus) with periodic bouts of BPPV. The vestibular neuritis caused damage to my inner ear (maybe the utricle) which has led to the continued off balance feeling. I think the eye floater is due to the initial inflammation that started all this.

As for now my biggest complaint is the neck pain that most of us know so well. When we are constantly dizzy we try to keep our heads still which leads to these terrible stiff/crackly necks. Doing VRT exercises is not easy on the necks either. I think this stress to our necks is what brings on a lot of the tingling/numbness/twitching that we all know so well.

Now here's the reason I wanted to post. I know that reading this post there are some who would immediately jump to the conclusion that SHE HAS LYME. All of that is just textbook lyme! Well, believe it or not I did the lyme thing. Went to the LLMD, had the Igenex test, the whole nine, and nope, I don't have lyme. And I know some people will go the hard core antibiotics route without having a clear cut diagnosis and I think that can be very dangerous decision.

I'm sharing this because I got the testing based on comments at this site. I, like so many of you, was DESPERATE for an answer and a cure. The thing about this testing is that it's relatively expensive and LLMDs are generally not covered under insurance and so the visits are expensive as well (and that's an entirely different topic). Now I'm not saying not to do this testing... do whatever you think is in the best interest for your health. What I am saying is that it is possible to have the symptoms I shared above and not have lyme.

Best wishes to all.


Amanda, Sorry you have been suffering so long. I wanted to share with you that I too have a very visible floater in my eye. I don't know when exactly I got mine, but I think in the last couple years. It is also a theory that they come from migraine headaches. I don't know, but I hope you are better soon. Our necks hurt because our muscles overcompensate for the dizziness and try to hold us still. Eventually all of our muscles get tight in response. It is a cascading effect. It is our center that is being attached so the entire body reacts. Best of luck to you all!

B


Amanda.

Good for you. Glad you at least ruled it out. I'm curious as to what your results were and who your doc was. Were you tested for Babesia and Bartonella? Babesia, in particular (a common lyme co-infection) commonly cuases labyrinthitis-like dizziness with floaters, etc.

As I've said many many times...not everyone here has lyme (obviously.)

I only encourage folks who have been sick for a long time, and who are uncompensated, consider it as the root of their symptoms. Particularly if their symptoms wax and wane in roughly 4 week patterns, if they have any CNS irritation (muscle twiching), if they have any abnormal brain scans, stiff neck, sore back, sore feet, etc.

You are right. Treatment is expensive and isn't without risk. But today, while I'm still treating, I"m living a "normal life", working 40+ hours per week, excelling in my career, and my wife and I are considering having another child. My dizziness, neck pain, etc, are all GONE.

Had I not found lyme & co as the root of my labyrinthitis, I would likely be disabled and financially destitute at this point. Remember that I originally tested negative and was told I only had "labs" and that I should seek therapy. WRONG.

To each their own...it is good you ruled it out as I think only an LLMD can do this.

I hope others who have been ill for a while consider the same. There are many folks on lymenet who've had Labs and who are now well.


Binx, did your doctor think that it was *only* migraine, and not uncompensated labyrinthitis?

I did the marching test too about 4 months in, and rotated 180 degrees after 30 seconds. After a few weeks of VRT, I stopped rotating. My physical therapist told me that people only rotate right at the beginning, before they are compensated. But I had the feeling that the VRT had also improved my sense of the other things I use for balance - mainly my eyes - so that I was actually aware of where the light was coming from under my eyelids, and the feel of the tiles under my feet, and that's partly why I didn't rotate when I tested again. Apparently that's one thing VRT is designed to do, to make you rely on other systems of balance other than your inner ear. The sick feelings, however, remain. Everything I've done to help get better has helped, including changing my diet and the VRT, but honestly I don't know how much we can rush our brains to compensate faster.


Hey,

Thank you Alice, Chuck & Lisa B, for taking the time to encourage & enlighten me. Its really amazing that we can all come here, rant, give advice and support eachother through this awful illness. I hope that everyone is seeing little or even BIG improvements lately, we all really deserve it. I say that positive thinking & trying our best to just live life normally will get you through, and i truely believe we are all stronger, more patient and compassionate because of this.

I got a nasty head cold this week, it only really affected my dizzies the first day, and honestly ( I REALLY do not want to jinx it) have felt some improvements during these past few days. I have also been really really positive, because i believe the mind is a powerful thing, and well, possitivity is just so important. I also started a drug called Sebelium & i've been taking it for about a week. I will see how this works out. I am not really one for taking drugs but last week i had a really bad week & i was at the point of being willing to try anything. I've felt no side effects, so i guess i'll see how it goes. I was told and i've read that you need to take it for a few weeks to really notice if it is working or not. But its funny, since taking them i've had no mirgraines (i got them sooo often before), so im crossing my fingers. (Sibelium is supposed to help with dizzyness/ vertigo too after awhile.)

Brad, what is an LLMD? I live in Canada, is there a such thing here? and that western blot test, i've never heard of. I sometimes wonder about lyme disease because i've traveled to BC a few times over the past few years & i think (but may be wrong) that lyme bearing ticks are around there. But im really unsure. If i am able to get tested properly for lyme, i would really like to do so. Im not to worried, because i don't experience alot of those "lyme" symptoms, but hey, getting tested just to make sure is cool with me..

Anyways have a fantastic day everybody! Relax, smile, laugh & try to stay strong.


Brad, as I'm sure you know I can't share the doctor's name here in public (which is a bit shady to me, but I'm willing to follow protocol), but I did receive his name after asking for recommendations at the lyme website.

It's been almost a year, so I don't recall all the terminology at this point, but I'm pretty confident he knew how to read the results and was thorough.

I know it is very tempting to throw antibiotics at every illness in this day and age, and of course it's understandable if the condition warrants antibiotic treatment (like in your case with clearly diagnosed lyme), but I recently watched my grandmother suffer and nearly die due to C. diff (Clostridium dificile) caused by antibiotics, so I am very wary of their overuse now.

I'm glad you say that not everyone here has lyme; likewise, I believe that not everyone who is "cured" of lyme actually had it to begin with. It seems to me that oftentimes the slow, gradual recovery of someone on antibiotics mirrors the slow recovery of someone with labs or neuritis who is gradually compensating.

I think an antibiotic often acts as a sort of placebo and allows people to feel that they are in the process of healing when actually it is their own body doing all the work. The mind is a powerful thing, and maybe that placebo effect is enough to help some people along. I just hope those people understand the risk.


Brad, I'm so glad you have received relief from your illness!! It is so debilitating and I thank you for you caring and all the info you have provided regarding Lyme. I think it is important to know and why not rule it out. I hope you continue to beat this and are soon done with this whole nightmare.

B


Hello Anna B,

My guess and it's only a guess - is that I have some degree of uncompensated labs. Looks like migraine and the shocking headaches amy be a complicating factor preventing full compensation or causing repeated de-compensation. I was always a bad headache sufferer prior to labs and also have a history of migraine. After a few days on the anti-migraine meds (pizotifen) the rotation whilst marching on the spot has stopped - so that must be telling me something. I'm only taking 0.5mg at night and still need to up to a total of 1.5mg in 0.5mg increments. Will see how things go and report back on progress.

To everybody old and new - my best wishes go with you. You are (as always) in my thoughts and prayers.

Stay safe,

BINX1965


Sarina, I am glad to hear you are feeling more positive and slightly better, really hope it continues but don't get too down if you have a bad day. I had a very good day yesterday, i felt like i was on a high of excitement that I was getting better, but a really bad one today, nausea, dizzy spins, awful.

A few days ago I went back to my GP and he thinks I have tension headaches caused by labs rather than migraine as I don't have a history of it. However he could be wrong as i now think he has never had a patient with labs before as he finally referred me for VRT but to a physio who doesn't even do it. I had to go half way across town to be told my GP had made a mistake! I have now found someone who does and have an appt next week. Really hope it will help.

Binx, glad you are still improving and Brad thanks for info on lymes. I think that dizziness from lymes is caused by damage to the central nervous system rather than the vestibular system so if you have the ENT tests which confirm definite damage to vestibular system then I dont think it's necessary to test for lymes. However if the results are not clear and there are other symptoms then I think you should get tested. I could be wrong but that's how I am looking at it at the moment.

This illness can be pretty vicious but I really feel that once we get over it, which we will, we will appreciate our health more and life. Stay strong everyone and take care.


Alice:

John Hopkins University, and other sites, state that Labs can be caused by lyme. It clearly states so if you look up Labyrinthitis on their website. It does, in fact, attack the labyrinth so there is absolutely vestibular damage.

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/labyrinthitis.html

"(Causes:) Bacterial or other infectious organisms, for example the organism that causes lyme disease"

Sarina..there are LLMD's in Canada but they are few and far between. Check out www.canlyme.com or flash.lymenet.org

Amanda..I disagree with you point, but that is just my opinion. Placebo rates in trials are usually around 30%, so youd expect a similar treatment outcome if antibiotics were just acting as a placebo for lyme folk. But most people, upwards of 80-90% of folks, get improvement while on proper antibiotic cocktails (and other supportive, complimentary therapies.)

Alsopeople need to be aware that our ability to test for disease causing organisms is pitifully poor. There is a growing camp of doctors and researchers who believe organisms are at the root of a large number of chronic illnesses including rheumatoid arthritis, Parkinsons, chronic fatigue, etc. Examples of these bugs are mycoplasma, gram negative bacteria, parasites, XMRV (retroviruses), regular viruses (HH6, etc).

So while someone may not have lyme proper (Borrelia Burdorferi), they may have Babesia and mycoplasma (both of which can cause labs like dizziness) and therefore benefit from treatment.

Again..not everyone has it (my disclaimer.) But if youve been ill for a while I would check it out. Particularly if you have headaches, still neck, sore back, twitching, sweating, nausea, floaters in your vision, anxiety (a symptom not a cause), lesions on your MRI, etc, etc.

Im really a bit shocked folks are so quick to dismiss the idea. People accept a diagnosis of MAV with ZERO evidence or history of migraines at all. Or they accept a Labs diagnosis and continue to get dismissed by doctors who arent doing anything to help other than wait and seeall while you continue on the endless loop of snakes and ladders. Not acceptable in my opinionbut that is me.

For me..I had labs. I had all of the signs and symptoms. My docs were of little help. I was told I got it from a virus and that I should go on Prozac and seek therapy. But it didnt sit right with me. Yesthe Labs seemed to fit the bill. But why did I have it? What was the cause? What was the root of my problems, particularly my non labs symptoms? (Twitching, sweating, Brain lesions,etc?)

I think it is really important to find root cause. But that is just me. To each their own.

Be well.


I stand corrected! I didn't know lymes actually causes labs, I thought it just mimicked symptoms. I certainly want a test then, my difficulty is finding a good doctor where I have moved to (rural Switzerland) let alone a LLMD. I will have to check some of the websites. Thanks brad


I agree with you, Brad. I got tested, though who knows how good of a test as this is Montana and Lyme is not proven here, but it was negative. I almost wished to be positive as that would have been an answer and had the possibility of a cure. I would not mess around with Lyme as it can end you. Brad is sharing his story because he was miserable and sick, but found an answer and just wishes to pass it on. Because WTH is causing these miserable symptoms and ruining our lives????? If I was told an anti-biotic could help, I'd take it. There are significant risks not to take anti-biotic. I have found doctors are extremely leery of handing them out for any reason, so if they offer they must think you need it. I would like some answers and I have not accepted the wishy washy ones I have received as there is not much change. This is a frustrating process and I welcome any possibilities of recovery...so thanks again, Brad.

Good health to all. B


Hey everyone,

Wow, it has been way too long. I have not posted in awhile. But wanted to pop in to see what everyone is up to...B? Gloria?

I have been feeling pretty darn good...probably 90-95%. Other than that, major triggers for me continue to be if I am tired, hormonal changes, and those damn headaches. But they seem to be getting better. I stay away from certain foods and drinks (wine is no longer my friend). But I do try to keep as active as I can...lots of incline walking and running. Have done yoga a couple of times...is still a challenge. Takes A LOT out of me. All that balancing!

Not on any meds for the headaches. Tried the propranolol for a bit, but had no luck. Have had decent results with taking magnesium around ‘that time of the month’. I have learned to rest up if I feel a nasty headache coming on, or if I am feeling extra tired and woozy.

To all you newbies out there. I am at just over 2.5 years with VN. The first year and a half were the worst. Felt awful all the time. Was scared and horrified that I felt so sick at 29 yrs old...and that most of the doctors I saw had no idea how to treat me. My only saving grace was lots of VRT, a supportive family, websites like this....and most of all, time. I learned (and continue to do so) that you cannot force or will yourself to get better. I felt great some days, than would turn around and feel terrible again. It is an awful kind of torture that most people do not understand. I remember staying in bed for weeks. I had never felt so sick in my life. But time time, and more time passed. I started to have more and more better days...fewer rough days in between. I tried to do a little bit more activity each day. I know I will always have setbacks...I just hope and pray that I continue to strengthen my body to deal with them as best it can.

Please keep the faith people!

xo Lucy


HEY, LUCY!!! I have been wondering about you for so long!! I'm so glad to hear from you! You sound pretty decent, considering. I wish you were a 100%. Hope to keep in touch!!! B;)


I'd like you to to reread this critical sentence from my post - "I know it is very tempting to throw antibiotics at every illness in this day and age, and of course it's understandable if the condition warrants antibiotic treatment (like in your case with clearly diagnosed lyme)"

I know better than anyone that we are all DESPERATE for an answer and a miracle cure... I just want everyone to be careful and do what's best for themselves and not feel bullied to go down a certain path because they are made to feel like if they don't they must not really want to get well.


Alice:

I LOVE Switzerland. I've been there a dozen times or so. Very envois of where you live.

THere are some good doctors in Germany that I know of. You may want to check lymenet (flash.lymenet.org) or lymenet europe.

B...there are several Montana folk on Lymenet who are treating with someone semi-local. You may want to reach out.


So my "ent" apointment that i waited two months to go to was yesterday. I get there to realize it was a neurologist. Even though my GP said an ENT. Weird & wasn't to impressed. The doctor their is convinced i have migraine associated vertigo. Is that typical to come from a neuorologist? Anyways he kind of sucked, rushed the apointment and wants me to try more drugs. I've had labs/VN for nearly four months now. And i really think its my inner ear, not headache. But whatever i guess i'll go along with it... -Sarina


The problem with website's like this is it is impossible to tell tone of one's written comments.

I am in no way trying to be a bully anyone about anything. And I don't ever believed I've implied that if people don't look into lyme as a possiblity then they don't want to get well.

If people felt my comments implied that then I'm sorry. It wasn't my intent.

Am I passionate about lyme? Sure. Do I encourage (or perhaps push a bit) for people to get check it out with an ILADS trained LLMD (Lyme Literate MD.) Absolutely.

I do admit I get confused by folks who are still content with a Labs diagnosis even though they've been sick for a very long time and they've gotten little to no help from their doctors.

I'm not saying the Labs diagnosis isn't real. It is (I had labs.) But what is the ROOT of it? If you don't eliminate root cause it is impossible to get well.

I see a lot of symptom management but not a lot of people targeting root cause. And that makes me frustrated because I know how awful the illness is and how desperate I was to get well. And I want others to get well too.

So..it is a bit of a crusade to shed some light on a group of illnesses which are greatly misunderstood in the medical community.


I think everyone here has the best of intentions. Everyone here is trying to do good and help other people get through this. That's the great thing about this site... people come here to give support and advice and just find someone that can relate to what they're going through.

With that being said, a lot of the people who visit this site are very vulnerable. In fact, I think being sick and not knowing what's wrong or what you can do to get better is one of the most vulnerable situations a person can be in. I know from personal experience. Vulnerable people though aren't always the most reasonable. I wasn't. So when I read something like this -

"I'm sorry, but I believe most people on here probably have it." (in reference to lyme)

or

"Why not rule it out before you waste months and months of feeling unwell?"

or

"Labs shouldn't be causing muscle twitching, tinging, stiff neck, etc."

or

"I'm not saying everyone here has lyme. But I can almost guarantee several of you do."

or

"You are correct...you may not have it. But what if you do? Wouldn't you want to at least rule it out?"

or

"Sorry to hear it will cost so much. But..isn't your health worth it?"

I did feel there was an implication that if I didn't get tested that being sick was somehow my fault. Not a reasonable reaction to something I read on some internet message board I know.... but like I said, vulnerable people aren't always reasonable.

Now looking back with a better perspective I can say that I disagree with those statements. So now I say the things I wish someone had said in response a year ago -

As far as I can tell, out of the thousands of messages and hundreds of posters to this site, only one person has a confirmed lyme diagnosis and saw improvement of symptoms with antibiotic treatment. I'm not saying it isn't a possibility (obviously it is), but I also don't want the prevalence to be overstated. I know there are other "lymies" who are dizzy, but I'm not familiar with their set of symptoms etc, so I can only go by what I see here.

I know we would all love to know exactly what virus or bacteria or condition caused our problem, but the truth is most of us probably have long since recovered from that. It's my opinion that most people here had labyrinthitis or neuritis caused by a virus or infection, but I don't think that is what we are dealing with months and years later. I think the labyrinthitis or neuritis caused vestibular damage. Anyone that's read about vestibular damage knows it can be very tricky. Sometimes it heals, sometimes it does not. The only proven treatments are time and VRT. I know we'd all love to take a pill instead, but that's the reality of it.

If you look through this site you'll see that overall most people here do get better (albeit slowly) over time, as is generally the case with vestibular damage.

I also don't want people to feel guilty about not having the money and resources to travel down every road of diagnosis. I know people like to say "how can you put a price tag on your health"? (Those people are usually a) healthy or b) rich.) Well you know what, here's my price tag - when all my credit cards were maxed and my savings were gone and we had to short sale our house because we couldn't make the payments and it was a choice between buying groceries or getting another test done.... that's my price tag.

Good luck to you all. It's a battle, but there is light at the end of the tunnel.

Amanda - I know what you mean. I am a pretty skeptical person, but I was so desperate for answers at the time that I gave the whole Lyme stuff a shot. I actually tested positive for Lyme with the IGENEX test, and went through the whole gamut of antibiotics (including IV stuff as well). Probably around 3 months into the whole ordeal, I came to a similar conclusion as you even though I continued with drugs for several months afterward.

I kept a journal of my symptoms long before I had any Lyme diagnosis, and I was always steadily improving (very slowly) long before I took any antibiotics. I'm pretty sure that this whole thing was either viral or bacterial middle ear infection that progressed to an inner ear infection and screwed up my vestibular nerve in my left ear. I never had any other symptoms at all. I had two clear-as-a-bell brain MRIs as well. I'm pretty confident in stating that that antibiotics did nothing to help the vestibular symptoms. Maybe they killed what was there and prevented any other stuff from developing, but honestly, who knows? I even had two more Lyme tests months into my treatment, and both were completely negative. I'm honestly starting to think that my original IGENEX test was bogus... either through a bad, stale blood sample or something.

Where Brad is, it's easy as hell to find an LLMD. The major expense occurs if you are like me and don't live in the northeast US. It costed me a pretty penny to go up and see an LLMD, and there's no way I could remotely afford it if I didn't have the job I did. If I was in financial trouble, I would have to be feeling really awful to shell out that kind of dough. You have to be careful because some of the LLMDs are bogus doctors looking to take advantage of sick people. It's not an easy choice to make, and I would encourage folks to do their research.

I was extremely desperate to find an answer when I was at my worst, and Brad's posts made me want to give it a shot. I am thankful to him for trying it, though, but honestly I think I am more of a skeptic now after reading everything I can on Lyme after a while. There are some absolute nutcases out there who certainly damage the view of the existence of chronic Lyme. I don't doubt that there are some flaws with the medical communities general outlook on it, but the other side of the coin (ILADS) seems equally shady to me. I won't get into details on here, but let's just say I have read A LOT on both sides. IMHO, I think the truth lies somewhere in between.

Agreed that having vestibular damage does suck, but it's great to be getting better. Just accept your issue for what it is, and everyone on here will as well... it just takes time, work, and a lot of courage.


Wow...I never thought this was the type of site where one would get "flamed" (attacked) for expressing an opinion and trying to help people.

Amanda...I fail to understand why you are attacking me with such hostility? I don't see how my encouraging folks who have not gotten over their labs at least consider and rule out a potential alternative diagnosis is a bad thing. You make it sound like I'm hurting folks by daring to suggest they consider something else if they are still feeling unwell.

I think you are greatly minimizing the potential benefit. Yes..you are correct that there has only been a small number of folks on this site who have benefited from treating lyme & co. But if you check dizzy lounge, lymenet, and other sites you will see many folks with "labs like" symptoms who have gotten great benefit. Dizziness, vertigo, and an off-balance feeling are very common symptoms of lyme, Babesia, bartonella and mycoplasma. I know over a dozen folks in my local support group who were originally diagnosed with a dizziness / vestibular disease (Labs, Meneires, etc) when it was really lyme & co. ALL are well now (or at least the dizziness portion of the disease is gone.)

Amanda...what happens if there are folks here who would benefit, and now they read your comments / skepticism and do not move forward with at least ruling it out and, as a result, do not get well (or get much worse.)? Don't you think that could hurt people?

Again..I never said people here have it. All I have ever done is encourage folks to consider, and rule out, an alternative. If you have been to an LLMD and have ruled out lyme & co then you can feel good that your original diagnosis was accurate and focus on the illness you have.

I realize life is a balancing act and one must balance pros versus cons (cost.) I remember debating whether I wanted to spend the $'s to go to my LLMD the first time and get tested. I had already been through 5 months of test after test, doctor after doctor, spending thousands at a TMJ specialist, Upper GI doc, ENT docs, etc., with no good answer other than Viral Labyrinthitis. In hindsight, going to my LLMD was the best thing for me, personally as I do believe I'd likely be disabled by now had I not found my doctor.

I don't have an issue if you disagree with me (that is your right). But I do take great exception with you trying to demonize my efforts when all I've ever tried to do is help people find a way back to good health when they are in a bad, bad place (I've been there and NEVER want to go back.) I remember being desperate for someone to help point me in the right direction. So I'm trying to be that person to help others. That is all. Take my advice or leave it. But don't crucify me for trying.

Chuck..good to hear from you as always. We agree to disagree on some things, which is totally fine. But I"m also glad you at least ruled it out and did some treatment if you happened to test positive. I hope you continue to improve and hope that annoying tinnitus goes away.

Be well.


Brad, I'm sorry you have to feel bad for trying. I think getting the word out is important and you have done all you can do. We are all in charge of ourselves here and how we use your information is our own personal choice and it cannot be put back on you. We are ultimately in charge of our own feelings too. I have never once felt pressure or bad about your information and I got tested, as I said, to rule it out. Once again, thank you. I'm not sure what has happened here, but you have been nothing but kind and informative. Please don't feel badly for even another second. Lyme can cause long lasting damage and our health IS worth it to have answers.

Do what each one of you needs to do for yourselves and what is best for YOU! We are here to support each other, as we are ALL suffering through this.

Best of health to all,

B


Women attack, demonize, and crucify and men agree to disagree. Sigh. Seriously though, no hard feelings on my end. I said exactly what I felt and I don't regret a word of it and I imagine you feel the same way.

Would now be a bad time for an "Under Our Skin" joke?

Haha... crazy stuff going on here.

Brad, I'm pretty sure you knew, but just to make it clear, I was not bashing your posts at all. Like I said, I'm thankful you posted and glad that I did all of that stuff... it eases my mind to know that I gave it a shot. IMHO, Amanda's post didn't seem like flaming, but rather her just telling her honest opinion.

Amanda, of course not! Bring on the joke(s)!


I myself ruled out Lyme as a possibility before getting any tests done, mostly because I did the research and found that there has not been a single documented case of Lyme where I live (Los Angeles), and not one Lyme specialist in a city where you can find every type of alternative health practitioner in the universe. For these reasons I decided that it couldn't possibly be Lyme.

Since then I've done a ton of research on health, and I've found that there are a number of other things that could have caused my abnormal MRI, my allergies and sinusitis which preceded the inner ear damage, and the chronic state of migraine I found myself in after the labs hit. One of the main causes that other people cite for these sorts of problems is food - mainly gluten, dairy, MSG, and aspartame. I don't think I ever would have looked into any of this had I not had an abnormal MRI and some neurological symptoms, such as stiff hands and ataxia. But it seems that intolerances to some of these foods can cause pretty extreme neurological damage, even if you are not having digestive problems. The extraordinary thing is that most people with MS or migraines reverse their symptoms when they change their diet. So that's the route I myself am taking. The good thing is that it doesn't cost anything except willpower and a little time. The underlying dizziness issues are still there and resolving slowly, but my headaches, insomnia, hypoglycemia, fatigue, depression, and anxiety are WOLRDS better since I changed my diet. Plus my immune system seems finally to be kicking in. If anyone is interested in how this is supposed to work, one article I read which explains the disease process really well is one by Dogtor J - if you type into Google "dogtor j id23" it will be the first result that comes up.


Here is an excerpt from the Dogtor J article:

A whopping 75% of the calories in the Standard American Diet (appropriately abbreviated the S.A.D.) come from the number one and number two human, dog, and cat food allergens: cow’s milk and wheat. Why they are the top allergens and why soy and corn join them to round out the top four will be the main topics of this discussion. But as if this is not bad enough, 90% of prepared human foods have hydrogenated oils in them and 60% have MSG (monosodium glutamate), which we will be talking about very shortly. Throw in things like aspartame (a known neurotoxin and MSG’s evil twin), tons of sugar and salt, preservatives, chemicals, estrogens, pesticide residues, and more and you have a pretty good start on how we arrived at Helm’s Deep. When we see that the vast majority of pet foods are made with their main allergens, then we can understand why these little angels (elves) and dwarves are fighting right along side of us. Oh, and we can’t forget the horses. They are vitally involved in this battle.

But, the real question (and this is huge) is “Why are cow milk and wheat the number one and two human, dog, and cat food allergens?” The answer is so simply that it is literally stupefying. There are substances in these “foods” and the other primary food allergens (soy and corn) that do physical harm to the intestinal tract, thereby eliciting an immune response. Part of this response is intended to go off to distant locations (skin, ears, lungs, brain, etc) to warn us that the damage is taking place. Yes, the enemy is sneaky and their initial attack on the headquarters of our camp is cloaked in secrecy. But, those with their eyes open should see the smoke rising from that assault.


Here is an excerpt from the Dogtor J article:

A whopping 75% of the calories in the Standard American Diet (appropriately abbreviated the S.A.D.) come from the number one and number two human, dog, and cat food allergens: cow’s milk and wheat. Why they are the top allergens and why soy and corn join them to round out the top four will be the main topics of this discussion. But as if this is not bad enough, 90% of prepared human foods have hydrogenated oils in them and 60% have MSG (monosodium glutamate), which we will be talking about very shortly. Throw in things like aspartame (a known neurotoxin and MSG’s evil twin), tons of sugar and salt, preservatives, chemicals, estrogens, pesticide residues, and more and you have a pretty good start on how we arrived at Helm’s Deep. When we see that the vast majority of pet foods are made with their main allergens, then we can understand why these little angels (elves) and dwarves are fighting right along side of us. Oh, and we can’t forget the horses. They are vitally involved in this battle.

But, the real question (and this is huge) is “Why are cow milk and wheat the number one and two human, dog, and cat food allergens?” The answer is so simply that it is literally stupefying. There are substances in these “foods” and the other primary food allergens (soy and corn) that do physical harm to the intestinal tract, thereby eliciting an immune response. Part of this response is intended to go off to distant locations (skin, ears, lungs, brain, etc) to warn us that the damage is taking place. Yes, the enemy is sneaky and their initial attack on the headquarters of our camp is cloaked in secrecy. But, those with their eyes open should see the smoke rising from that assault.


Amanda...your comments / approach and Chucks were very different. It has nothing to do with gender. I'm sorry if I lost my temper.

Chuck..no apologies needed. I took no issue with your comments opinion.

Anna B. I'm not sure where you are getting your information about "no lyme in LA" but that is 100% false.

According to the California Lyme Disease Association, lyme infected deer ticks have been found in 42 out of 58 counties in California.

Look at the map here. http://www.lymedisease.org/california/california_map.html

A negative test means nothing. (I was originally negative.)

OK..on to the next topic!


Hi Brad,

I stand corrected. You're right, now I remember that Lyme was found in Los Angeles county, but in the statistics that I read (I think from the county), there were only a few cases in the last thirty years, and none of them was in Griffith Park where I walk. That it was not found in Griffith Park was what made me decide it was highly unlikely for me to have it. These statistics are much higher than the ones I read.

I know that a negative test is not necessarily conclusive, but a positive test is not necessarily conclusive either. What I read was that in such a highly sensitive test, there is a 10% chance of a false positive. So one thing is you have to trust that you really do have Lyme, and then you have to trust that the standard therapy for Lyme will work for you and is good for your body. I personally don't believe in the safety of long term antibiotic therapy, at least for me. I know I have a delicate system and that it gets upset quite easily by strong medication. I think taking a strong regimen of antibiotics could actually make me sicker in the long run. So If I became convinced that Lyme was indeed my problem, then I would do something else for it - ozone therapy perhaps. I have read so many stories of people healing themselves of Meniere's or even Lyme with alternative treatments. I think awhile back I posted a link to a site where a guy who had been struggling with Lyme for years with antibiotic treatments went off the treatments, because they were no longer working, and got better doing an alternative regimen of vitamins and supplements. I personally will try diet and supplements before trying anything more risky and expensive, but that's just me.


Hi everyone, I ended up in emergency at the hospital yesterday feeling like I was dying with terrible dizziness and a blinding headache. I also had stomach cramps aswell as pins and needles. Not sure if I have taken so many vitamins to cure labs that my stomach is now a mess. Anyway I got pain killers and had various tests and i specifically asked to be tested for lymes. The doctors said that lymes in switzerland usually presents with some type of facial paralysis which I don't have but they will check anyway, i get the results in a couple of days and if i have it then i personally will be taking all the antibiotics i am offered! I also have finally got a referral to a neurotologist back home in London so hoping to get more help. The symptoms worrying me the most are the strange pins and needles sensations everywhere, going to discuss this more at the consultation. Given what's going on, it probably is anxiety but I am just not aware of over breathing. I am almost into my fifth month of this now and cannot contemplate how I will cope if I am still feeling like this in six months time. I have nothing but admiration for long term sufferers!


Alice, I'm so very sorry to hear that you are feeling to badly. I wish it would just stop. I almost hope you have lyme just so you have some answers. I'm thinking of you. Best wishes. B


Alice, It's a very strong possibility that you had a migraine attack Those are all symptoms of migraines. If you have anyone in your family with migraines, the possibility is even stronger Pins and needles can be from the way you are breathing, but it can also be from migraines. It is good that you will be seeing a neurotologist.


Hello evertone 'old and new'.

Seems a few have dropped off the blog - and a few new ones are on board. My hopes and prayers for speedy improvement and recovery are with you all.

Seems Lyme has been a 'hot' topic since I was last around - I might throw thyroid disorders into the mix just to make things more interesting - no only joking ! I'm sure (and most will hopefully agree) that there are probably (most definately) people languishing on these boards with un-diagnosed conditions which mimic labs/VN/MAV type symptoms - the odds just say that has to be true. It's always good to be informed of the possibilities - so at least it can be considered and run up your medics flag pole from time to time. I am sure that by rattling your symptoms into 'google' the other alternatives spring easily to hand.

Me: Just on week 3 of the anti migraine meds. My dose goes up this Thursday. Seems to be doing the business - although an odd rough day still creeps in here and there. My diagnosis in the end was Labs/VN which morphed into 24/7 migraine as the final hu-rah. Not uncommon so i'm told.

I will be at 1 year on the 16th December. 2011 will be confined to the trash bin soon and I hopefully look forward to a better 2012.

Hang on and stay safe,

BINX1965


B and Tina, thank you for your kind words and helpful suggestions. I am still waiting for tests results but I have also been thinking I may have developed migraine. My dad had alot of headaches from childhood and was always carrying headache pills but never actually diagnosed with migraine. I am counting the days now for my appointment with the neurotologist. I think I may also have upset my stomach with too much ibruprofen so stopping that. Take care everyone


Has anyone read that book "Heal Your Headache" by David Bucholz? I was looking at Amazon reviews and it looks promising. Some people who write reviews say they has vestibular problems, dizziness, were diagnosed with Meniere's, etc., but that it was actually migraine, and that this book helped them. I think I'm going to buy it.

Binx, have you tried changing your diet to avoid migraine triggers, or are you only doing the medication? What medication are you taking? Alice, I'd suggest looking into this book - so many people swear that's it's cured their migraines for good.

Cheers, Anna


Hi everyone, glad some of you are making a recovery, good to hear migraine meds may work. Sarina, how's your medication going? I tested negative for lymes disease, I don't know the precise test they used at the hospital in Switzerland (my French is good for ordering bread but not discussing lymes disease tests) but will mention to neurotologist when I see her in the UK. I had stomach cramps in hospital and have tested positive to a stomach bacteria so have been given antibiotics, however when I searched this antibiotic online it says it can cause dizziness and can be 'ototoxic' as in inner ear toxic!! My ears almost fell off in fright!! It says only in rare cases so now wondering whether to complete the five day course or discontinue. I am staying on it for the moment. In bed now feeling terribly dizzy since my trip to hospital, just don't feel an improvement. Thanks for book info Anna, looks interesting, may get it if headaches continue, Alice


Dont really feel like posting....but gotta say I AGREE with Amanda


Hi, am new to this site & thought I would post. Have been suffering with this now for nearly five weeks. The first two - three weeks were definitely the worst. First 2-3 days bed bound. Vertigo, nausea, blurry vision, dizziness, nestagmus, head pressure. Horrible! The symptoms are gradually diminishing. Just left with blurry vision, dizziness & head pressure. Took Serc for the first two weeks but they gave me headaches/upset tummy. Not taking anything now. Trying to keep active but its hard when you just feel dizzy all the time :( Hoping to be well again by Xmas, fingers crossed! XxX


Hi Charlotte, this illness is truly awful but hang on in there as you are likely to make a full recovery by weeks 8 to 12. I think we are the unlucky ones here. I have xmas in mind too as a turning point, lets hope so! Good luck xx


Hey !

I've been on the sebelium for about three weeks now and i can truely say it has made such a big difference. I saw a neurologist, that is convinced that i have MAV, which shocked me. For one, i did get headaches, horrible ones, but i never knew that i was suffering migraines. Huh... I normally am against taking any kind of drug, but seriously, the migraine drug route has made me almost feel completely normally. No more funny dizzy head feeling, the only time i really feel a slight dizzyness is if i make a sudden movement, but it is barely noticeable, and a whole lot less intense than before. Im hoping that i continue improving and that when im done the sibelium it doesn't all come back.. That is my biggest fear. But for now im more than happy. I went from feeling 25% normal to 90% normal. Im nineteen, generally healthy and have been dealing with this for five months now and it is CRAP.

Charlotte, my best advice is to try to be as patient as possible with this thing. I kept getting frustrated because i wasn't improving as fast as i would like, in the end it just made me more upset. I found serc did not work at all. It gave me awful headaches & weird dreams. I actually took herbal over the counter diuretic tablets for a few days and that definantly got rid of the head pressure and the ear pressure. No side effects on those, you just pee more ha ha. Anyways keep possitive, people do get better from this! I seem to be. (FINGERS CROSSED).

Alright people. Have a good week, and hopefully there is improvement for all. -Sarina


Hello everyone, (old and new)

Just to answer the migraine meds question.

I have been on a graded dose of pizotifen. 0.5 mg once a day (taken in the evening) for 3 weeks. Then upto 1 mg once a day (taken in the evening) for a further 3 weeks. I have just started the larger dose and it seems to be doing the trick - so fingers crossed.

My symptoms are now minimal and revolve mainly around headaches. My feet seem firmly attached to the floor again and have been for some time. Occasionally, I might get a little reminder in the supermarket or when exposed to flickering sunlight through the trees - but that's it. I am even coming out of the other side of a bad cold with no worsening of symptoms so that has to be a good sign.

I am coming to the conclusion that if you have not recovered from the initial labs/VN attack within 12 weeks of onset then something else is hindering your recovery. That failure to recover might be related to uncompensated damage, BPPV issues, migraine after-shock or something else. Don't be fobbed off by your doctor after the 12 week barrier has passed - this is the time you need to do most pushing harder for answers. Either that or be left in a sort of indefinate limbo.

Everyone will recover from this junk - or at a mimimum - to a level where a good quality of life can be enjoyed again with minor symptoms popping up here and there.

Stay safe everyone - and a big 'shout out' to the veterans who helped me through the worst of this junk nearly a year ago - you know who you are - thankyou.

BINX1965


How great to hear some of you are finally getting the right help! Keep the recovery stories coming as it makes me feel there is hope. Struggling to cope with this mentally at the moment, keep feeling scared that I am going to be stuck inside this malfunctioning head forever. I am finally seeing a neurotologist tomorrow after five months of hell so hoping for more help. Has anyone tried anything to cope with the psychological side of all of this? Not keen on pills but thinking of something like meditation maybe?


Alice, It is definitely hard on the psyche. I am a believer in the benzos for their inner ear calming effect and their anxiety calming effect. I am loads better then I was at five months and you need to tell yourself that you will keep getting better too. I'm sorry you are having such a hard time, but I remember how hard it really is. Set backs feel like the end of the world, but they are never as bad as the first time. We improve in small ways as we go and they are barely noticeable. I think I have improved since the beta-blocker was added for the migraine aspect, though I have not had a one in years, but the pills seem to have made a bit of a difference. I still use the xanax and feel it has not slowed my compensation one bit. I still make the same progress as those who did not take it. I don't think anyone really knows how it all shakes out. Alice, take an anxiety med if you need to, the stress is just a harmful as the illness itself. That is my advice to you. You are going to get through this. We all are. Keep your head up, I know it is so so hard sometimes. I'm thinkin the good thought!!!!

B

Hey all,

I'm still doing pretty good. If I didn't have my 24/7 tinnitus, I would say I was pretty much recovered. I'm glad to see so many positive posts on here. This place is pretty much what got me through the worst bits of this crap, that's for sure! A big thanks to Rich for keeping it going.

Binx - Agreed about everyone recovering and getting their lives back. Not sure that 12 weeks is the magical point, though. My worst feelings for sure were in the first few weeks, but I cannot say I recovered in 12 weeks. I would say it depends on how bad off your attack was. I think my left inner ear got damaged pretty badly, and the permanent tinnitus is pretty much my proof of that. I do know that I continued to get better each and every month for the most part albeit at a glacial pace. The biggest thing for me was getting to a point where I could see that I was getting better. Before then, life really sucked and I was so low. I do agree that if you don't see any improvement at all, then get double or triple checked by the doctors.

B - I 100% agree that Benzos and antidepressants are very good for the depression or anxiety issues this crap can cause. I wouldn't advise going nuts on them with a super high dose or anything, but just find the right dose to keep the edge off. SSRIs weren't the answer for me, because I didn't like their side effects (for the few I took). But I found that taking a low-dose tricyclic (amitriptyline) really helped me sleep and wake up feeling better. If you want to go this route, get a doctor you feel comfortable with who will let you try them all out until you find one that works for you. It cannot hurt. I found that it really helped me over the hump when I needed it.

I forgot to tell everyone else to hang in there. You will get through this! I am over a year removed from being in tears thinking my life was pretty much over and that I would never be a success story. Trust me... it will happen for all of you as well. In the meantime, be patient with yourself, keep a POSITIVE attitude, and treat your body/mind right!


Chuck, Interesting you mention Amitriptyline!! It is used as a migraine prevention med also!! It is supposed to help sleep, anxiety and in higher doses depression. I am considering it for sleep. I read on a site review of it about a person with headaches and "wooziness" who received much relief from it. What was your dose? I agree that we should not be blowing up the doses for many reasons, but a low dose of a Benzo should be very effective. I take the lowest dose 1 time a day, but on bad days I take two or one in a half. I think you are so right about trying until you find the one(s). Not everyone is the same. You keep on the mend, Chuck!

I just think this is hard on a person and a little help is ok. I know some people believe that it hinders compensation, but I don't know if I believe that. People avoid them and still suffer for years. I have taken them the entire time and have improved substantially. It all comes down to personal belief and requirement. Be cautious and careful with your medications.

Good luck everyone!!! B

B - Yeah, I know that it's a migraine prevention drug. I honestly don't know if that's what I have been dealing with, but I suppose it's possible. I have never really been prone to migraines at all before, and I even went all out on the MAV diet from the "Heal Your Headache" book for a few months with not much of a difference in how I felt. I did lose a ton of weight though (which I have promptly gained back once I started feeling better)! Who knows at this point? All I take is 10mg before bedtime, and it really helps me sleep with my tinnitus. It does make me feel better overall, though that's probably due to the wonderful sleep I get while I'm on it. ;)

I absolutely agree that people should not be afraid of medication of any kind. Why not try and get some help to deal with this crap? If it doesn't work, you can always stop it. If it's really MAV, then it's killing two birds with one stone anyway. It's pretty easy to get any of these meds from a doctor in the USA, and I'm sure that it's probably the same deal in the UK as well.


Hi, I have just found your site - it's wonderful - I wish I had found it a couple of months ago. I have had labs for 3 months now and I have been lucky that the symptoms have subsided somewhat. The doctor had me on Stemetil 3 x daily for 10 of the weeks, but I have weaned myself off of them and feel better and at least I am hopefully compensating myself now and I know what is 'me'. Just one ? for everyone out there - I have had dreadful anxiety and sort of panic attacks when I go out and the doc has prescribed Sertraline (an SSRI) to help with this - has anybody else tried this? My thoughts are with everyone who has experienced this awful journey. Take care, Tracy


Thanks everyone for your encouragement. I think I was trying to think positively for months and then hit a huge brick wall and kept crying all the time feeling that this would never end. I finally saw a neurotologist who said it looks like I haven't been getting good medical care and like others have been told that following the VN I now have MAV. She mentioned putting me on amitriptyline but wants to discuss this with an allergy doctor as I have asthma and allergies so waiting for a decision. I have also finally been referred for VRT and have some exercises to take home. They said it should take another 6 months to get better which seems ages but at least I have a target in sight. This condition certainly takes it out of you on many levels and i agree taking anything that helps is a good thing. Welcome Tracy, this site is a great source of info and support x


Week six. Was starting to feel better. Just had a blurry vision & a bit of a spaced out feeling. so decided to go back to work. Today woke up with horrible vertigo / dizziness & nausea. Lasted a couple of hours then went. Then after dinner it came back? Thought I was improving & seems Im getting worse. Came off the Serc at week two but needed it again today. Have been doing some VRT I found on you tube. Trying to keep active. Depressed :-(


Charlotte, I'm so sorry you are suffering. You are getting better, but you will have set backs. Stay active, but don't over do it! You will suffer for that. Listen to your body and follow it's cues. It is a journey for sure, but you will arrive at the end eventually!!!

Alice, Do share what they say about the amitriptyline. I am curious as I was given it for sleep, but the neuro said it could work for MAV. What dose?

Best wishes, B


Hello everyone old and new.

BINX1965 - 1 YEAR TODAY.


Greetings everyone and thank you for this site. I am a newbie at only 3 weeks now and the stories you have shared have made me feel a bit more secure about this.

Mine started with the wakeup, situp and the world spinning. Of course panic set in but things stabilized. Doctors visit, anti motion pills and a diagnosis that things will be better on average about 3 weeks time. Worst for me has been sleeping. Cannot lay on back as spinning does not stop. Left side fine and right side spinning for about 10 seconds after turning over.

Yesterday off balance when leaning forward i.e. sitting on couch patting the dog. Nearly fell forward on to dog which really freaked both of us out.

Now when I woke this morning and rolled to right the room was spinning and slowed down after about a minute but that was bad and unexpected. That one really scared me. At 57 I have been through a few problems like we all do but this gets you down. I told my wife I would rather have another kidney stone than this since I knew what to expect and there were not too many surprises!

I see in only 3 weeks this is not a problem like a cold or flu where you have the worse then it gradually gets better. This seems to be a 2 steps forward may 1 or 1/2 back depending on the day. Just my opinion though and you have all said it gets better with tim.

Sorry to vent but this really freaked me this morning so I wanted to get my story out and at the same time thank you all for sharing yours.

Thanks again.

Steve B.


Binx, congratulations! You survived one year! My one year anniversary is coming up in a couple of weeks. I had really hoped never to be an "old-timer" on this board!!

Chuck, which foods did you cut out on the MAV diet? Just curious. I'm surprised you didn't see any changes. I did an elimination diet, and the main thing I found out is that I get really sick on MSG now. But I haven't added back gluten and dairy either, because they seem also to jangle my nerves and are addicting.

Welcome to the newbies, Steve, Charlotte, etc. So sorry you have to suffer like this. I remember how truly terrifying it was at the beginning. But it DOES get better. Hopefully it will go away quickly and not linger like it did for some of us.


Hey Steve,

Sorry you're having to deal with this. Did your doctor test you for BPPV? I ask because the laying down/turning over vertigo is a hallmark of BPPV. If it is just BPPV, it can be easily corrected with some physical maneuvering. I had vestibular neuritis and BPPV, but the BPPV was what caused the worst of the spinning and I was so glad to be rid of that.

Message to Steve B. Your symptoms sound like Benign Paroxysmal Positional Vertigo (BPPV) that can be treated with a maneuver that moves the loosened ear crystals to a part of the inner ear that won't cause symptoms: See this website written by an MD who is a balance expert for further info: http://www.dizziness-and-balance.com/disorders/bppv/bppv.html


Hi Amanda and Tina. The doctor only told me that the ear canal was inflamed and swollen and that I had a virus and classic Labyrinthitis symptoms. Should I got back to him or give it more time. In the US with no health insurance at this time so watching every penny.


Hi everyone, well done Binx and Anna on being so brave to get to year of this in one piece! Steve, I agree it sounds like part of your dizziness is caused by BPPV and you should ask a good doctor to assess you for this as it can be easily treated.

Charlotte and all other newbies, hang in there, get all the support you can. I definitely recommend taking gingko as there is a scientific study to show it can help to repair vestibular damage. I took this straight away and my latest tests show my vestibular nerve has recovered some of it's function. My problem now is MAV.

B, I will let you know my medication dosage as soon as it's prescribed, unfortunately the allergy doctor was abroad and she wants to see me before I start on meds so might be another couple of weeks. Desperate now to get some help.

Good luck to all of you!


Hey, Steve, You can look up some maneuvers on the internet for BPPV relief. You could give it a try. I think the good thoughts for you!!! I think it is called the Eply Maneuver. Good luck. You will get better!!

B


Hello everyone it has been a while since I have been on here,but I have great news and I wish I knew this 3 years ago. My Doctor sent me to a special Chiropractor/Functional Neurologist. Yes a Chiro! This field deals with the spine of course but most importantly the neurological pathways in the brain. It has been an amazing 2 months, with only 2 real attacks (dizziness, vertigo, fogginess, nausea, blurry vision) you know the symptoms. Most importantly I know what is causing this and can easily work with it to bring it down. Probably the nicest thing is it has nothing to do with what I ate or something I did wrong. The field is called FUNCTIONAL NEUROLOGy or BRAIN BASED THERAPY, you can look it up online. Dr. KARRICK is the the Dr, that pioneered this entire off shoot of chiro/neurology. They do not use drugs or surgery. It has been amazing to see what can go wrong in the brain and how we are fixing it. By the way for any sports fans this is the Dr. that is working with Sydney Crosby and other major sports stars who suffer from Post Concussion Syndrome or Symptoms. Our symptoms are very similar to PCS. You can read about it in Sports Illustrated. I would be happy to help anyone or answer any questions.


Mike, Please tell us more. What are you doing there? Having adjustments? I'm so glad you are having relief!!! Thanks! B


B First I woke up 3 years ago with extreme vertigo and have suffered since with everything from dizziness, tinnitus, fogginess, forgetfullness, personality changes, sleep problems, blurriness, a constant hangover/drunk feeling exhaustion you know it. I have since been through every and any test you can name, some of them twice. I have been on migraine meds, antivert none of it worked. The treatment I go through is rather easy, but very interesting. First my Dr. Dr, Kevin Parks did balance testing, (a drunk test) to see my situation, checked the strength in my hands which interestingly he made weeker by doing certain eye tests (yes it was amazing to feel the weekness by just following his finger) he stops looks at me and said "Iknow whats wrong with you, 3-4 months and you will be fine" So I do eye excercises, electric stim on my neck and warm water in my left ear to stimulate the vestibular system and my right cortex. My problem is my left Cerebellum and right Cortex are not communicating correctly and we are building the pathways. Everything is left side of my body to the right cortex since the brain criss crosses. Oh I can now sleep on my right side which is awesome. I go 2 times a week for minor back adjustments and neck adjustments as I have discs out in both. He would not adjust my neck for weeks since I had to strengthen my brain first.The overload of both at one time would be detremental and make me worse. The neck is doing very well, I have eye excercises to do at home as well as relax, ease up on the computer and realize what bugs me. After that not too much, sleep is very important though I have realized that. I know what causes flair ups, which is lack of sleep, since the cerebellum does not sleep and will cause problems during the day as you tire.Also is computers or windshield wipers or even loud noises just like Migraine triggers. I know sometimes when it starts I relax, or other times I excercise to fire up the muscle spindle and cranks up the cerebellum, and stops the mid brain from over reacting.There is so much to this but it is so interesting. He also said we would probably never find the cause since up to 95% of the people never due so lets just fix it. It has been a great 2 months. Look it up online as well as how the brain works and the different lobes, their jobs and problems that can arise in those sections. Any questions please write. Mike


Wow, Mike! That is quite a story. I think most of us can relate to the testing and treatment processes you've gone through. I think this is very interesting, especially since my PT cannot work on my neck at all without causing pain, dizziness, and general discomfort. We don't even touch that now. I did testing that showed the dizziness came from my brain and the neuro didn't know why or what is causing it. So I am doing txt for migraines now. I am better, but not like I would like to be. Do you know if there are other docs like the one you are seeing? I have suffered almost every symptom you describe and the fogginess/forgetfulness is the one I hate the most. I'm not wild about the dizziness, but it is part of life now. I have not slept in years either and that is just all around bad for the entire body. I had some on and off dizzy spells for about a year and then 14 months ago it came on and never went away. It has changed over the year, but it is ever present.

I'm so happy you are on a recovery path and that you finally found someone to help you. He is a hero!!! Where are you, meaning, what country? Thank you so much for sharing your story as we need that hope from time to time!! Keep us posted on how this goes!

B


B I'm in New Jersey. There are several of these doctors across America. Look up Brain Based Therapy or Functional Neurology on the internet or youtube, to get an idea of what they look for and do. Dr. Carrick is the main Doctor. You can catch the Sydney Crosby press conference on Youtube with Dr. Carrick. Also he uses a Gyrostim multi axis chair which is amazing, you need to watch it to believe it. Let me know where you live and I will ask my Dr. if anyone is close to you. I seriously can't explain how much of a difference this makes and how fast it works. And just how interesting this whole approach is and how your brain and body work. Definetely look it up online and I will be happy to help in any way.

Mike


Hello everyone,

I have been suffering with LAB for about 6.5 weeks. I had a question. Did anyone experience the blurry/hazy/off vision in a more extreme way after the dizziness had subsided? My dizziness seems pretty well under control at this point but my vision seems very unstable and spotty. Like the whole world is a dream. Is this the last symptom to leave? How long does this typically last? I know nobody can answer that question but is this something other people are experiencing? It's like...I don't have vision impairment and I can still see and do everything I'm supposed to but my vision is just slow moving or spotty. Any thoughts would be super helpful.


Hi Bobby, yes the blurry, out of focus vision is all part of it. I have this constantly, bit like looking through a strange glass. It's good news you don't feel dizzy aswell as it sounds like you are on the road to recovery.

Mike, do you know if a functional neurologist is the same as a chiro neuro or is that something else? I think there was a chiro neuro practice in the Uk.

Has anyone tried cranial sacral therapy, wondering if it actually works as there is someone who does this near me.

Sitting in a coffee shop at the moment with stripey carpet, patterned wallpaper and strange parrots hanging from the ceiling, just cancelled the order as going cross eyed!


Mike, I am in Montana. Thank you for your info and I think it is awesome that you are getting better!! I want to too! Have a great day!

Bobby, I still have vision issues sometimes, but causally when I am backsliding or really tired. It was much worse at 6.5 weeks. Have you spoken to your doc just to ease your mind about it? You def should. I'm very glad you are recovering and I hope your vision gets better soon. Good luck!!

B


Hi Bobby:

I had vision like you describe...everything looked like it was through a camera lens and in a dream-like state. I've heard it referred to depersonalization or derealization.

In my case this was due to my undiagnosed Lyme disease...which, for me, happened to be the root of my Labyrinthitis and my vision issues (and a host of other symptoms I had including anxiety, stiff neck, sweating, muscle aches, tinnitus, GI issues, etc, etc.)

Suggest you read my posts above and on previous pages to see if your symptoms match. If so, you may want to find an LLMD to rule out lyme as the root of your issues. A negative blood test doesn't mean you don't have it as they miss 70% or more cases.


Hi all,

Well it has been quite a long time since I posted on here. I see a lot of newbies and some oldies as well. lol

For those who remember me, I was diagnosed with labs in May of 2009. It was a hellish journey to recovery. All my past posts are still on here somewhere in the time period.

That said, this blog was the one and only place I felt safe venting and talking to everyone about all the crap I was going through with labs.

Amanda, I have to agree with you about the Lyme diagnosis. This is a labs site and not a Lyme disease site. It is important to rule out all that you can, but coming on to this site and telling everyone on here that their labs symptoms are the exact same as Lyme is a bit confusing.

When I was first diagnosed I would have taken any pill, any test, seen any doctor, to get any kind of an answer.

It is very important for all of you on here to understand that labs is a very real condition. A horrible, rotten condition. I think that doctors and people like to give names to our symptoms and are quick to call it Lyme.

Brad your information is helpful, but it is also redundant. Over and over you tell people on here to get tested for Lyme. That their labs symptoms mimic Lyme. I think it is very important for everyone on here to understand that they most likely have labs and not lyme.

Gloria, Shirley, Jemma, I'm so happy that I don't see any posts by you in the last couple of months!!! Hooray, we made it out of this crap!!!

I am 100% recovered!!! I always have a few moments. If it is going to rain or snow or it is humid, I feel a little off. Sort of spacey feeling. I do feel fullness in my ears a lot of the time and my monthlies always bring on a few moments too.

I hope all of you on here have a speedy recovery. Exercise, eat well, limit caffeine, salt and nicotine. Be the healthiest ever and you will recover. Also, take this all into your own hands. The doctors were of NO help to me. Most of them didn't listen to me at all. My ENT told me it takes a year for the nerve in my vestibular system to fully heal. She was so damn right! It took a little longer, but I did recover.

You all will recover!! It is not a linear recovery. It is a bumpy up and down roller coaster of a ride!

KEEP THE FAITH!!!!!

Melissa


Thanks so much for your responses, guys. I don't think it's Lyme as I don't have stiff neck, sweating, muscle aches, tinnitus or GI issues. In all honesty, my only symptom appears to be the depersonalization or derealization as you put it and very very very mild dizziness with position changes. To all of you, does this sound like it's bettering? Is this foggy vision the last to leave? How and when do you notice the blurred vision improving?


Alice I don't know about the terminology I will find out. B I have appointment friday morning I will ask for you. Just look into it on the internet it is so interesting. Mike


Melissa:

Glad you are feeling better.

I realize this is a Labs site. I had lyme-induced labs and found this site when I was extremely ill and you were very helpful in providing me with support in that dark dark time.

But I respectfully disagree with you on your comments re lyme. Obviously not everyone here has it. I'm not implying that they do. But some could and isn't it worth ruling out?

According to the world-famous John Hopkins Medical Center, they list Lyme as a potential cause of Labyrinthitis here: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/labyrinthitis.html

Quote on the "Causes" section for Labs: "Bacterial or other infectious organisms, for example the organism that causes lyme disease"

In addition, the CDC estimates that 9 out of 10 people with lyme get misdiagnosed with another illness because testing is so unreliable..most commonly Fibromyalgia, Chronic Fatigue, MS, Meneire's Disease, and Labyrinthitis.

I personally have met dozens and dozens of folks who were misdiagnosed, some for YEARS, before finally getting a proper diagnosis and getting well. And I'll I'm doing to trying to make sure that doesn't happen to others.

I realize I may be repeating myself to some "old timers" on this site. But honestly, with 14 pages of posts, I don't think the "newbies" are going back and reading posts way back on page 12.

So..this will likely be my last post for 2011. I know some here don't like my comments. Not sure why they are met with such hostilty by some. I am a firm believer in the need to find "root cause". And, to me, Labs that is uncompensated for months / years is not normal. Something else has to be going on.

I particularly feel the need to comment when someone new describes there Lab's symptoms with other symptoms like tingling, muscle twitches, headaches, stiff neck, sore back, muscle cramps, sweating, chills, and depersonalization / derealization (and about 40 potential others). If folks are complaining about symptoms like this with there labs...something else is going on (in my experience..I'm not a doctor.)

Some docs hand out a MAV diagnosis even though there is zero proof, history, or experiences with migraines..yet this is accepted. But lyme isn't.

I completely agree with you that you need to be your own advocate and seek out / research all that you can. Most (not all) Doctors will give you a quick diagnosis and prescribe drugs to treat symptoms.

If there is one thing I have learned through my battle is that it is much better to address root cause then cover symptoms.

I wish everyone a happy holiday season and HEALTHY 2012!

Cheers to all. Be well.

Brad


I have had labs/vn? For about five months now. I started having dizzy spells that were short and more of a lightheaded type feeling for three months before the actual constant off balance crap set in. It all started with an extremely blocked right ear and I had to use a wax removal kit on it. I fear that I wrecked my ear with it but I'm not sure? Could doing something to my "outer ear" affect my inner ear? I'm worried I have Meniers but I read it is more common in older people. (I'm only nineteen). I have more good days now than in the beginning and I'm hoping that means I'm recovering. At the start I was dizzy for a few weeks, than completely symptom free for a month and than wam, I wake up back at square one. Does anyone know if that is common? If someone could try answering my questions it would be so greatly appreciated for I am still waiting to see a freakin ENT. Doctors seem useless. -sarina.


Sarina, It sounds very normal...well, for labs. I had dizzy spells for about a year before it hit. It does mean you're getting better. You probably didn't hurt your ear with your wax kit. I still have wild ears and it has been, what feels like, forever for me....14 mo. Sometimes my ear will plug and I will literally fall to the side and a few minutes later it is gone. I'm sorry you're suffering and I hope you are over the worst of it. Each setback will be better then before. I wish you well.

Brad, you have good information and people can take it however they take it. I found it helpful and I think others do too. You are just sharing your experience. I think this is just frustrating all around for folks on here to be so ill.

Melissa, Are you still running everyday? I'm so happy to hear you are at !00%!! How exciting! That is just more proof that we can all be!! Pop in from time to time to share your "happy ending". Everyone needs to hear that kind of hope!! Thanks!

Alice, Any news from you? Hope you are doing loads better then a couple weeks ago!!

Mike, I can't wait to hear from you! Thank you!

I wish everyone a healthy new year and a wonderful holiday season.

B

B


Hi sarina, were you on medication for migraine? Is it now not working? Poor you that is disappointing if it's all come back. I have also had labs for 5 months, the last month has probably been the worst. I am about to go on migraine meds too. Is there any way you can ask your doctor for a referral to a neurotologist (different from a neurologist), this is a specialist in this area, in my experience much better than ENT. I just saw one and was given another 6 months to get better. The ENT doctor I saw was just vague. I think seeing a neurotologist may be your best hope of a proper diagnosis and help. By the way I also hurt my ear before this all started (suspected perforated eardrum) but they said even if there is a link, the recovery is the same as if labs was caused by a virus. You are very unlikely to have permanently damaged your ear from removing wax so don't worry. Good luck

Bobby, the vision issues you have are likely to ease up as you improve but if you are suffering longer than 3 months I would see a specialist too x


I also just wanted to say one more thing about the labs/Lyme debate. I think Brad is right to inform 'newbies' about lymes but I spoke to my neurotologist about the exact symptoms Brad describes (muscle twitches, aches etc) and this can be caused by labs as a result of anxiety. The vestibular system is so intricately linked with the nervous system that if you feel dizzy day in day out then even without having panic attacks you can trigger a whole host of 'worrying' symptoms. Also labs can be uncompensated for a very long time without a lymes element. I think to be so absolute that these symptoms cannot be triggered by labs is just not correct. Having tested negative for lymes, I am going to trust the doctor and follow their plan but if I don't improve then I will try more tests etc So for me I think brads mission to let us all know about lymes is important but perhaps could ease up on the opinion rather than fact.


Me again! B, just to let u know I received letter with my dose for amitriptyline, the dose is specifically for migraine, it's 10 mg at night, increasing to 20 mg after 2 weeks, to stay on that for four to six weeks with possibility of increasing in 10 mg steps on a monthly basis depending whether symptoms are going. Hope that helps. Still waiting for prescription! I am better today thanks, i wont get too excited as the last month was awful, I am really hoping for an improved 2012. Happy holidays to you all, sending lots of positive thoughts for a quick recovery! Xx

I, for one, appreciate Brad's mission to try to help others. I think it is foolhardy to silence someone who has information that may help someone, if not you personally. Even if Brad's info only helps one person, that will be sufficient.

I agree that anxiety can cause a lot of the panic attacks, blurred vision, and heart palpitations and even GI symptoms, but chills and swollen lymph nodes would suggest that there is an ongoing microbe wreaking havoc in one's system-- Not necessarily Lymes, but it could be a herpes virus, for example that kicked off the VN or even Meniere's attack. I have even heard of people attributing their labs to candida.

I also agree that MAV is a diagnosis that is slapped on a lot of our foreheads with uncompensated labs. But it seems that having a vestibular injury can be very confusing to the brain and can lead to the hyper-excitability of neuronal activity Thus prolonging or preventing brain compensation from the original viral or bacterial-mediated vestibular injury. When there is no stable baseline from which the brain can recalibrate and create new pathways around the injury, the symptoms persist. To make it even more confusing, a migraine episode can in and of itself, in rare cases, cause damage to the vestibular system.

But again this hyper-excitability and the ensuing dizzy symptoms can come from a vestibular injury, but also from a problem in the spine, or a subclinical microbe, or an allergic reaction. All we can do is share our successes and our failures. I hope someday there will be better and more sensitive testing so we can solve the mystery of all these strange illnesses.

So I don't know about the rest of you, but I want to hear about other's successes/failures in getting rid of their dizzies, no matter what it is. And I can decide on my own which treatment plans to pursue.

The most important starting point for any healing no matter what the illness, whether Lyme's , Labs, or Chronic Fatigue is cleaning up our diets, quality sleep, fresh air and sunshine, moderate exercise, appreciating family and friends, and keeping the faith that we will get better.

Happy Holidays, whatever you celebrate and a Happy New Year!


I would just like to let everyone on here know that after 7 weeks of having this, I had about an 85% day!!! I know 7 weeks is absolutely insignificant to some of you and I am honestly and sincerely putting out positive energy to all of you who are chronic sufferers. I can't imagine what it's like. For the newbies that have limited symptoms, I can guarantee that it gets better.

Just a couple questions for the experienced members, if I have a really good day, does it usually progressively get better and better or can it suddenly backslide one day? I can describe my initial symptoms as being pretty damn mild with one or two days of motion sickness followed by a cold virus that turned into a bacterial sinus infection. I have no headaches, tinnitus, nausea, or spinning vertigo. In fact I would say my dizzy symptoms are next to nothing and when I say 85% I mean with very very very mild dizziness with position changes but mostly the foggy vision/derealization symptoms. I would say the derealization was at about 85% better today. Does this sounds like it's on its way out? I would love to hear some words of encouragement and affirmation.

On a side note, and this may sound really strange, I was feeling pretty bad this morning when I woke up, mostly from nerves. Instead of wallowing in my anxiety, which is easy to do with Labs, I went outside and played basketball. This proved to be an incredible way to start my day and seemed to very much decrease any sense of dizziness and derealization with my following daily activities. I know this isn't a cure and it might just be a coincidence that I did this on the day that I started feeling better, but if you have nothing to lose I would suggest getting some exercise (of course only if you can) that involves hand-eye coordination and focus. I mean, you might as well give it a shot right (no pun intended)?

Thanks so much for this blog. It has helped me immensely to feel less isolated. I am not a religious person, but for lack of a better higher power I want to say god bless all of you and I really hope for your speedy and calm recoveries.


Bobby, I would say that you are on the path to recovery for sure. It has been known to backslide, but that is never as bad as the first time and it happens less and less as time goes on. I do think that activity is helpful, for many reasons, but it helps you compensate the damage. The doctors even tell you to stay active. In the beginning it was super hard, but necessary. Most people who get this recover rather quickly. My dentist had it and he recovered in just a couple weeks. There is no reason that you won't too. I'm very excited for you!!

B


B I will get you info today.

Bobby What I am told is that with physical activity it fires up the muscle spindle through the spine and into the Cerebellum, which in turn gets the cortex going which slows the Mid Brain. The Mid brain left unchecked will go a little wild causing alot of problems. One of the best things do is when it acts up usually do to driving or computer work, is walk away from it take a walk, do some push ups, just something physical and give my eyes a break. Mike


Last question, only because it wasn't really answered before. I have practically zero dizziness. I would say none at all in fact. However, I still have lingering symptoms of fuzzy vision/derealization. Is it normal for this to linger on after the dizziness has subsided? If so, how can I notice it improving? It seems to be in the same state as it has been for the past week. This might be impossible to say, but after the dizziness has completely subsided, how long can one expect to have the derealization/fuzzy vision? Is it normal for it to linger like this? Is it just a sign that it is improving?

Bobby


So I have totally had a relapse over the weekend. I had a few glasses of wine on Thursday evening at my xmas party and woke up Friday morning with the lightheadedness/dizziness! It had pretty much gone away and suddenly returned. I am thinking it was the alcohol, but I am sure I've had a few drinks at some point during this whole thing with no effect...maybe cause I was still having lightheadedness/dizziness before. Anyone else have alcohol cause vertigo to return? Also I took a long car ride for xmas with my family and had a ton of car sickness issues...never had this before...anyone else have this too? This disease/virus is horrible!


@Lisa,

I don't drink alcohol but I can only assume since it exacerbates any illness that it certainly could not have helped. On the other note, driving made me INCREDIBLY sick and anxious. I know that driving and having to focus on moving objects for long periods of time can REALLY mess with this. I had a 6 hour drive on Saturday and when I arrived at my destination, I was motion sick and my foggy vision symptoms were AWFUL. However, the next day, after I had sufficiently woken up, I felt 10 times better and perhaps even better than I did before the drive. I would say don't fear the driving symptoms as they are totally normal and aren't necessarily an indication of a major backslide.


Lisa, so sorry to hear about your relapse. That's truly awful. I have not had a single sip of alcohol since this thing hit nearly a year ago, as I instinctively know it would bring on symptoms. I've had car sickness issues pretty much my whole life, and of course it's much worse now. I'm getting so much better lately, but just now I drove just a little and it was just terrible.

I know it's different for everyone, but I don't think wine is very good for the inner ear. I'm almost positive that having a few glasses of wine the night before I got labs in what brought it on. One can develop an allergy to red wine at any age. And wine is definitely a migraine trigger, which can bring on the labs symptoms. It's the tannins in the wine as much as the alcohol that are a problem. I would recommend David Bucholz' book "Heal Your Headache," which I think is very relevant to labs triggers as well as migraine. I don't follow everything in the book, but he explains how one day a certain food such as chocolate may be a trigger, and another day you can indulge in chocolate with no problem, so you think you're not sensitive to chocolate which isn't strictly true. It has to do with the number of triggers you're getting at one time. So for instance if you have a lot of stress or didn't sleep enough or the weather was funky or your blood sugar was low, the chocolate would trigger symptoms that wouldn't be triggered otherwise. Wine is my worst trigger, even before the labs actually, but it wasn't until the labs hit that I took seriously how sick it made me and stopped drinking it. Please take care, and I hope you feel better soon.


B check out the website ACNB.org its a member locator for all the Dr's. in the group.

Lisa B. Alcohol directly effects the Cerebellum (when the police administer a sobriety test they are testing your Cerebellum), which is where all my problems are/were. Then you do not sleep well with alcohol in your system which in turn hurts the Cerebellum further. Waking up the next morning to an over taxed Cerebellum which for me takes a couple of days to recover from. yes it happens to me also the car sickness or long rides especially with the windshield wipers going. When you drive you typically fix your eyesight on the cars in front of you, when you are a passenger you look all over, causing your eyes to focus on alot of different things some moving and some not, which messes with your head which is already compromised. My eyes were unable to hold a gaze or quickly focus on a target (Secadia). Which is one of the causes for car sickness or sea sickness.

Mike


Thanks, Mike!!! Unfortunately there are none near me. How sad! I hope you continue to feel way better!

Happy Holidays all!


Thanks all for the responses. I will most likely avoid alcohol in the future...as I do not drink only but once in a while at social gatherings anyway.

I was a passenger the entire car ride, so that must have been it. I was looking all over and it caused the car sickness. I know now that I'll have to take my meclizine when I travel long distances in the car. I've never been able to read in a car because of car sickness issues, but I have never had the issues like I did over this last weekend.

I wish my doctors would have warned me of the drinking and car rides. :(


Again, sorry guys but I still haven't gotten a response on these questions so I'll repost. Any help would be really appreciated...

Last question, only because it wasn't really answered before. I have practically zero dizziness. I would say none at all in fact. However, I still have lingering symptoms of fuzzy vision/derealization. Is it normal for this to linger on after the dizziness has subsided? If so, how can I notice it improving? It seems to be in the same state as it has been for the past week. This might be impossible to say, but after the dizziness has completely subsided, how long can one expect to have the derealization/fuzzy vision? Is it normal for it to linger like this? Is it just a sign that it is improving?

Bobby


Bobby,

Yes, what you're describing is all very normal. How long can you expect it to linger? No one knows the answer to that question. That feeling stayed with me for about a year. It still hits me sometimes if it is raining out. I feel very fuzzy and spacey almost. Don't worry about how long it takes to recover. You will recover. It just isn't a linear recovery. It will be an up and down recovery. You'll feel great one day and the next not so great. You may have weeks that are terrific and then it hits. All of that is normal for labs.

I'm a 2 1/2 year survivor of labs. I've been 99.9 percent better now for over a year.

Merry Christmas, Happy New Year everyone! Melissa


Thanks so much for your response, Melissa. How severe were your initial symptoms?


Bobby,

My initial symptoms were SEVERE!!!!! I felt like I was on a boat in the middle of a bad storm at sea. That lasted for about 3 months. All day and all night. After the rocking subsided, I felt like someone was tilting me in a chair backwards. That was all day and lasted about 1 month. Then the fun part kicked in...ANXIETY and PANIC attacks! I had 3, yes THREE days where I didn't sleep at all. The anxiety and panic attacks for me were the worst. I hated the rocking and sea sick feeling, but the panic attacks were killer. All part of my vestibular system saying "Hell no!" "What is going on here?!"

After about 5 months I finally had enough. I went to a VRT Therapist. Vestibular Rehab Therapist. A physical therapist trained to help people with vestibular disorders. I was with her 3 days a week for 5 months.

It literally took a year before I felt normal again. As I've said before, I still have moments. The other day I turned my head and it felt like the floor dropped out from under me. It was a split second, but I felt it.

For me I had to take my healing into my own hands. I made my GP write me a script to go to PT. I starting running daily to help with the anxiety.

You will be okay. It just takes time.

Keep the faith Melissa


Melissa,

Although I sincerely feel so terrible that you had to endure that experience, your story makes me feel somewhat better as my symptoms are nowhere near as severe. I only had one day of motion sickness with a couple of days here and there of mild mild dizziness. I, like you, have terrible anxiety hence my posts on this forum every day. I know it's probably unwise to compare but it it does give me hope that mine will clear up very soon. I'm almost 8 weeks in and fully functional although crowds and supermarkets and theaters are still maddening on account of the fuzzy and struggling vision. I think it's just been hard for me to notice any progress as I expect it to happen day to day. My fuzzy vision has seemed so static. I guess I just have to trust that I will have both good and bad days until it clears up completely. I'm waiting on one really good day :-). Thanks so much for responding and I am so happy to hear you've survived that nightmare. It gives us anxiety-ridden newbies a lot of hope. Cheers.

Bobby


Bobby,

I did take Zoloft and Xanax to get me through the worst of the anxiety. I went to a very good and expensive psychiatrist. She prescribed the Zoloft and Xanax. She also titrated me off them when I didn't need them anymore.

Melissa


Yes I am currently taking xanax and zoloft was recommended to me. Would you say that this helped you a ton in dealing with it?

If I'm already 2 months into this, is it likely that the symptoms I've already experienced are the worst they will be? Is it possible to worsen or does this illness only improve with compensation?

With the fuzzy vision symptom, what causes that? Is it still your system attempting to compensate? At this point, I am fully functional, can move my head in all directions with ease both at night and in the day, playing basketball, golf etc. but crowds and lots of visual information stagger me, not with dizziness but tired and stiff vision. Also right when I wake up in the morning and change positions, my head sort of rattles for 10 seconds and then settles. Does this sound familiar? When did you notice the stiff fuzzy vision improving? Did you awake one day and it was gone? Did it gradually wane? Did it go like 90% one day 50% the next 76 the next? How did you note that those symptoms had left?


Melissa, my symptoms are very similar to yours. But my doctor told me that he thought that the damage to my ear was permanent and was not going to heal. He said the brain just has to compensate for the injury. But then my VRT therapist said that it DOES heal. This is the first time I've heard a doctor put a time frame of a year on the nerve healing. It makes sense, because only in the past several weeks have I felt that I am coming more back to normal, and it's been almost exactly a year. Thanks so much for sharing your experience with us. It helps a lot.


Anna, I have also been told that a year is about the time it takes for some people to recover from VN or labs and that the ear can indeed heal, usually within the first six months but it then takes a while longer for the brain to readjust again.

Melissa, sounds like you went through absolute hell, what relief you must feel that that period of your life is over.

I have had a bad couple of days. Having to make a real effort to not get too down, especially with young children to look after. Fed up of the drunk feeling!

Hoping for a much better 2012 and wishing everyone suffering from this a full recovery, God bless you all

About recovery. The little hair cells in the balance organs do not regenerate, if they have been damaged due to labs etc. However, if there is no interference from an underlying medical condition or from BPPV or from Migraine Associated Vertigo, the brain has a fabulous capacity to compensate for the damage by creating new neuronal pathways that allows for full recovery of our ability to move in space. That is where VRT comes into play. If for some reason, your brain has not compensated, VRT (vestibular rehabilitation therapy) may help in that process.


Hi all, just wondered if anybody could offer me some advice. I was diagnosed with Labrythitis 3 weeks ago and seemed to suffer the same effects as everyone else: unable to move without vomiting etc. However, for the past week I have been able to walk around, and even take my dogs out for walks without feeling too bad. It is only in the evenings and mornings when I have a slight amount of dizziness and aching in the back of my eyes. My cause for concern is that I am due to fly to France tomorrow for a skiing holiday and am unsure as to whether I should fly or not? I have rung my insurance company who have assured me that I will still be covered if I go with Labrythitis but just don't know what to do? Thanks,


Ashley, I think people have different response to flying with labs, I have been fine but some people have found it makes them worse especially with a cold.

Tina, I think there is a difference of opinion with medical profs about vestibular nerve regeneration. The ENT doctor I saw said that vestibular damage is permanent and there would be no change in my caloric test result (20 per cent deficit) even if i took it again in a few years but my symptoms would improve due to compensation. However I then saw a professor of neurotology who said that's not necessarily the case, recently they are seeing that there is a recovery of the nerve in some people within first six months and infact my second caloric test showed a huge improvement. My problem now is migraine dizziness. I am not too concerned about the science though along as I improve and I am not at the mo. About to start migraine meds and not keen on side effects. Anyone who has tried any effective alternative treatments pl let me know x


Hey experiences members,

I've had labs for over two months now. Is it even possible for symptoms to worsen or can the illness only move toward compensation? In other words, can it only get better from here on out?

BOBBY


Hi bobby, lots of people seem to recover from labs in a slow non linear way with good days and then bad days. The first few weeks are usually the worst. However if you still have problems at 3 months I would ask for a referral to a specialist for testing. The best thing you can do in the meantime is to have an active life, good sleep, good diet and not to worry too much. Worry definitely makes the labs journey a whole lot worse.

Happy New Year to everyone and thank you to Rich for this invaluable site!


Hello !! I am soooooooo frustrated. I've had labs for about six months now. Although I sometimes have good days, I still feel the imbalance & all the not so fun symptoms all day everyday. My doctor refuses to send me to an ENT specialist. He told me that they don't leven look at or care for cases like mine, he'll only send me to a neurologist, which I've seen, and I haven't had much help from there either. My doctor is pretty ignorant, and tells me to "just deal with it, it can't be that bad, it's not like it's cancer", oh how I wish he could feel my bizarre symptoms for a day & maybe he would offer me better help. Do any of you see an ear nose throat specialist? Is it true that they won't even look at a labrynthitis case? I find that hard to believe because it's an ear issue, duh. I just want my life back. He also told me I'll never have improvement & to get used to it, I'm just thinking "thanks for the positive feedback". Anyone know if I even have viral labs? My symptoms came on gradually, over a few months, short dizzy spells and than full on symptoms.. They didn't come on after a cold or flu. This makes me think I'll be stuck like this forever... Happy new years everyone!! Hopefully next year will bring so much improvement for all of us.. -sarina


Bobby, Sorry it took me so long to get back to you. I have been so busy with the holidays.

The fuzzy vision and anxiety in crowds is all normal. I did not wake up one day and it was gone. It was a very up and down recovery. One day I would be ok and the next I could be really bad.

As for the Zoloft, yes it absolutely helped me heal. I read a lot about it before I took it. I also only took the brand name and NOT the generic. It is very important to go to a psychiatrist to get these medications prescribed. So what I read about Zoloft is that it increases the flow of serotonin to your brain. The serotonin actually flows through your vestibular system. So an increase in it, can actually help heal the nerve damage to your ear.

Your recovery will not be linear. It will be an up and down recovery. Don't panic and don't think it is forever. It isn't! I promise you that in a few months you too will be writing words of hope for someone.

Alice, You're very welcome. This site helped me through some of my darkest days. As for the nerve healing...Tina is correct about the cilea hairs being damaged. However, my ENT told me it takes them a year to grow back. They do in fact grow back. She also explained to me that it would take a good year for the nerve to heal fully. She told me that it would not be a linear recovery. She told me that I had a virus that attacked my inner ear nerve. That I was sick and had to take it easy. She said even on the best days, to rest. She also told me that in the future I may have "moments" when the labs symptoms would hit me. She said that in stores or if I got a cold, I would feel them at times, but they wouldn't be as bad. She was 100 % right!!!

Bobby, just be patient and take your healing into your own hands. Go for walks, jog, exercise. Do not drink alcohol or smoke. Be the healthiest you can be and remember to rest. Your immune system is fighting a nasty virus!!!

Keep the faith everyone!! HAPPY NEW YEAR!!! I hope 2012 brings health and happiness to you all! Melissa


Sarina, They will look at you, but the won't really be of any help either. I'm sorry you have such a crappie doc and would suggest finding a new, more compassionate, one. This is a frustrating illness and at six months I was having bad weeks at a time and then good weeks, but every relapse I felt like I was never going to get well. I am loads better, but I have been suffering for 14 months and that is not counting the 12 or so months of dizzy spells I had previous. It is long and takes forever and it really is a waiting game. I think meds are good and you should take them, I know others will disagree, but they have helped me and I AM recovering. Inner ear is just a total mess and takes it's sweet time to heal. I'll be thinking of you. Melissa, I love your story. I am so happy that you are where you are. Take great care.

I hope everyone's New Year will be filled with good health. I long for a cocktail, but feel it won't be much longer until I can enjoy one!!! Good wishes and good thoughts!!!

B


Hey guys,

Well I'm freaking out. I had a good run of days (like 3-4) where I wasn't feeling very many dizzy or surreal vision symptoms but over the past couple of days it's gotten really bad. My surreal/derealization symptoms are super strong. This has left me very discouraged. First things first, I know that progress is non-linear and I know it's normal for this to come back on. However, I do have a couple of questions.

1.If I had a good run of 3-4 days with extremely limited symptoms, is that a good sign that it is improving and on its way out?

2. If symptoms return in the way that mine did, do they usually last as long as when they first appeared?

3. Do the run of good days get longer and run of bad days get shorter as we improve?

4. Can new symptoms appear after 2 months of having this?

I am 9 weeks in and the only symptoms I have at this point are anxiety and surreal/fuzzy vision with mild mild dizziness with certain head movements. If someone could answer these questions for me, it would really ease my mind.


Bobby, This is unpredictable, but usually the good days become more then the bad, they don't usually last as long as the in the very beginning, and yes, new symptoms can appear two months in. Nine weeks is, to me, the very beginning, but for some it is nearing the end. It's course can be different for different people. Take some deep breaths and know that this is just part of this roller coaster and start thinking of it as such. It changed a lot for me over the course that I have had it. It IS working toward improvement, but unfortunately it is not fast or consistent. I wish I could give you better info. It is scary and long and debilitating. It sucks and no one deserves to have it. You WILL get better!!! You will get more and more used to it and not react to it with constant anxiety and fright. You will improve and not realize it. You will look back and know you are better now then "then". I'm sorry you have to do this. Remember that it takes time. I hope you get some relief and I hope you are one of the ones that heals quickly!! B


Hey, Is VRT crucial to getting over this? I found a clinic that offers it in my city but it is really expensive. I'm willing to try anything at this point though, I'm going through a really rough patch and just want to feel some improvement. The anti migraine pills aren't really working. Seemed to be at first but not anymore, such an up and down process. I can have good days but I always end up having really bad days. I wish there was a magic cure. I wish I had a more compassionate doctor and family. Feeling blah.. -sarina


Hi Bobby After loads of doctor visits and finally paying to go private to see a physician I was diagnosed with Labyrnthitis 7 months ago. NIGHTMARE. I just thought I would take some time to answer your questions as best I can.... 1.I think it is a good sign as obviously its better than having the symptoms day in day out, in my case there is no rhyme or reason to anything with labs. I have had 2 weeks of feeling 99% then bang its back for a month. I have also had 1 day symptom free then Feel terrible the next day. 2.Not a;ways its hard to say. 3.Not in my case its all over the place. 4.I started with a weird disconnected fuzzy head, strange feeling for 2 weeks. I could put up with it just about but then I had a massive vertigo/panick attack and that was it, I was wiped out. Couldn't go to work or even leave the house and this lasted for 2 months although I did have the odd day when i felt ok..... After that I started feeling sick, constantly lightheaded and hungover ....Horrible. I am now 7 months in to this crap and do have good days and sometime weeks. Like I say there is no reason for anything..... Now I get heavy headed on a bad day with the usual lightheadedness that hasn't really gone away at all....I think with Labs you need to stay as positive as you can and try to not think about it toooooo much (hard I know) when you get the funny surreal feeling vision. Its hard to explain like when I look closely at something or focus on somebody in conversation it spins me out.. Anyway hope all this helps Get better soon....


Sarina, is there any way you can change your doctor or get a second opinion? Maybe the clinic that does VRT can recommend a good doctor who will understand what you are going through? It could be that you need a different medication or the dose needs to be changed? There seem to be a few different meds that prevent migraine and dizziness. Don't give up. I felt really stuck too a few weeks ago until I saw a doctor who I have confidence in. I think VRT is very useful but if you have a migraine problem too then getting the right medication and dose is really important. I would really try to find a good specialist. Take care


Bobby,

I found that on the days that I felt better I would over do it. I'm not a sit around type of person. So it was tough for me to rest. So on my good days I would do as much as I could get done. Then I would get slammed with symptoms again.

Yes, you can have new symptoms week 9. All normal. Try not to panic lol I know that sounds funny because panic and labs go hand in hand.

At week 9 I was at my worst with panic and anxiety. Those were dark days and long nights.

Keep calm and rest!

Melissa


Alice, Have you tried the med? How is it? Side effects? I'm still chicken. Hope you are feeling better!!

B


Bobby- I'm sorry for how this has affected you. I had labs for almost a whole year with the same symptoms as you it was NUTS!! keep believing you will get better, and keep your mind occupied. i was to the point of going crazy then i got a job at Yellowstone park. After intense hiking for about a month it was gone. Cardiovascular exercise goes a long way if not all the way for recovery. take care.


B, I am still not on the meds as have to fly back home and take the first dose with my doctor incase I have an allergic reaction (v unlikely but I have been in hospital before with allergic reactions to meds). I have appt on Monday and as I have had a few good days (70 per cent normal), I am thinking whether to delay it or just go for it. I am always hopeful I am getting better then get hit by a terrible day and it's such a disappointment. How are B, are you feeling better these days?

Has anyone heard of neurofeedback? I just read an article in the paper saying this is a new treatment they are using to train the brain to heal from problems in the central nervous system. There have been good results from medical research, i dont think it's an alternative treatment. There is an explanatory clip in YouTube 'what is neurofeedback - EEG INFO' and they use a case of a woman with migraine who was cured with this treatment. Just wondering if anyone has tried it or heard about it as if it's effective, no side effects and painless I might give it a go for migraine/dizziness maybe?


Hello everyone,

I have not posted in a while.

Just for those new to this junk (as I once was) there are many questions about the strange and twisted symptoms that you will experience. For your benefit here is the list of symptoms I experienced during 12 months with the inner ear monster.

Cold / flu type symptoms Constant sore throats Face swollen left side (front of ear to jaw line) Severe neck pain (originally left side only with swelling - now bi-lateral) Neck / head tilted and not straight Chiropractor refuses to work with neck (severe vomiting following first visit) Tinnitus (originally left ear now both). Tinnitus changes significantly with head movement. Cracking noises. Loud buzzing sounds both ears (intermittent) Vision problems (slow tracking) and vibrating / flickering at edges / vision jumpy (twitching) Feelings of floating and vertigo (crowds / movement / patterns / on waking) Palpitations and feeling that heart rhythm is changing Fatigue and tiredness with constant night waking (need for 12 14 hours rest) Difficulty watching TV (flicker) (sometimes felt like passing out) Difficulty using a PC (flicker) (sometimes felt like passing out) Difficulty reading as words blurring and jumping around on page (black print on white background is worst) Unable to tolerate combination noise (TV / people taking / washing machine / radio) Unable to tolerate conversation (more than one person speaking at once / phone conversations) Unable to tolerate fast motion or busy environments (crowds / traffic) Unable to drive due to vision problems (still can only drive short distances and not at all some days) Store lighting and ceiling heights appear to cause problems (ok in some stores but not others) (fluorescent lighting combinations / flicker). Tesco is the worst culprit. Constant headaches / migraines (never seem to be without low level headache) Motion sensitivity (balance off / vertigo after car journey) Light sensitivity (bright sunlight / car headlights / street lights / television) Feeling hot (opening windows in middle of winter to cool down) Burning feet (particularly right foot) Problems when passing from dark to light areas and vice versa Feelings of pressure in head and ears Concussive echo in left ear Difficulty walking and coordinating / constant tripping (gets worse with distance travelled) Problems focusing (eyes not adjusting focus) Vertical double vision (best observed when looking at stars on a clear night) Increased perspiration Feeling of internal tremor on waking then disappears Feelings / sensations of anxiety and nervousness (for no apparent reason) Little or no ability to concentrate for more than a few minutes (poor short term memory) Memory problems (could not remember house number or postcode) Forgetfulness and problems with speech (words mixed up) Problems with writing and spelling Symptoms always worse in morning and tend to ease considerably as day goes on At times feel like vision is in 2D instead of 3D Feelings of hangover but without the fun beforehand Headaches in back of head spreading over left side Pain around left ear (skull area) Pains in ears (particularly left) Atmospheric pressure changes exacerbate symptoms (can tell what the weather is like before the curtains are open) Eyes feel like they are being pulled by magnets and struggle to focus / things jumping around. Feeling of movement in back of skull / head Feeling that right leg is dragging (and also that one leg is longer than other) Intermittent numbness / tingling along side of right hand and 2 fingers. Tinnitus worse on waking or after lying down Feeling of motion or floor moving after getting off an escalator or lift Posture blown with deteriorating physical conditioning Sunlight and flicker through trees whilst walking or travelling in car affect vision and balance Eyes feel stiff to move / feeling of movement in back of head when eyes move. Pain behind eyes (particularly left eye) Problems with patterned floors and surfaces (stripes) also some floor coverings undulating moving in waves.

My diagnosis: Labs/VN which left me with MAV.

Doing good on the migraine meds hoping to be at 100% very soon.

Hello to all my old friends on this blog who helped me through the worst of this junk approx 12 months ago. I am forever in your debt. As always, thanks to Rich for keeping the blog up and running and in doing so helping the many sufferers out there informed and in contact with each other. You have to have lived this crap to really know what it's like !

Final advice - try to get to see a neuroTologist (note the spelling) or specialist AudioVestibular Physician as soon as you can. Standard ENT's and Neurologists are useless with this stuff. Never get fobbed off by a medic - get tough and stand your ground. If you are not happy say so.

Stay safe and best wishes.

BINX1965 x


Hey hey , I have a question that I've always thought about and have been confused about. Can labrynthitis come on gradually? Mine seemed to have started with surreal vision and lightheadnedness here and there for a couple minutes or so every odd day, for about three months. Before the constant unbalance, swaying, dizzy, ect mess kicked in. So I guess I had "dizzy spells" or as I would put it a strange lightheadnedness spell, for awhile before the constant really awful symptoms. Does anyone know if that is normal?.. I just get really confused and scared, I read that most people wake up one day with it and it usually follows a cold or some kind of sickness. Which is not the case with me, it gradually crept up on me, over a few months.

I really hope I get better soon. I was having such good weeks at a time with minimal dizzyness, but these past few days have been rough. This illness is so not fun. To those that are feeling improvement, how long did it take you to get where you are? .. The nerve can actually heal in a year???.. I guess I'm halfway there. Has there ever been a case where it goes on forever?! I'm terrified. I turn 20 soon and want to just get on with my life..

Sarina.

I havent been here for a long time, but I have some important information to share with everyone who is still suffering.

If you have been diagnosed with uncompensated labyrinthitis, or have some type of chronic dizziness/vertigo, you to consider MIGRAINE ASSOCIATED VERTIGO. It is the most common cause of balance disorders. It can cause chronic 24/7 symptoms, and you dont need to experience migraine headaches to have it.


Hi, Alice! I have been ok. We went to Seattle for xmas and it is a seven hour drive and that always throws me off and takes a few days to get back to good. I am doing pretty well these days and I think maybe some in part to the propranolol that the neuro prescribed for MAV. I still have the new one that you got, but have been chicken to take it. I may as it has actually been prescribed for sleep and I miss sleep. My neuro thinks the combo of the propranolol and the amitriptyline will be even more helpful. I hope so. I've had enough, but haven't we all!!!! I'd say I stay in the 90% group most days.

Sarina, Mine came on as dizzy spells for about a year before it hit full blast. It has been a long road and I started to have better days a few months after, but had frequent relapses all the way up to about nine months and then they started to be lesser at about that point. I have weird off days still when the weather changes, I have swollen sinuses, or long trips and stress. They don't last near as long as they used too and I have even been thinking about another job. I have worked only part time since this started and had to quit my full time job. I have always worked my second job and it has been very hard at times, but I think it has helped me improve with all that head movement!!!! I walked and hiked a lot in that time, but haven't in a few months due to some joint trouble I am having now. My jobs are very physical and exhausting, since I don't sleep, so I have been slacking in the outdoor dept!! It's sad because I LOVE hiking! It is very scary and I had some pretty miserable days like we all have. I beyond my year and think I am really making progress to heal. I have read it can take up to 18 months, but yes, there are others on this board that have suffered for years. You are young and you will heal. Long term suffering is rare and very unfortunate. You will get better and I know how hard it is to be patient. Keep venting and try....easier said then done...to keep your stress down. I'm thinking of you!!!

Brad, I am so glad you are getting the upper hand! I think there is def something to this MAV! Keep us posted.

Be well everyone!!!

B


B, so glad you are sometimes at 90 per cent, it sounds like you are getting there. As long as we feel some improvement from the early days then I think we are on the way to recovery even though it's incredibly slow. I also have some joint pain, there is something called benign fasciculation syndrome which is a condition that causes muscle pain, tiredness and twitches and usually follows a virus or the body being run down, I wonder if I have that.

The thing that puts me off amiltriptyline is that one of the side effects can be memory loss and my memory and concentration is already poor after suffering with this. I can't take beta blockers as I have asthma. So undecided whether to take it but the specialist said it will readjust brain chemistry and hopefully correct the MAV in a few months and then I can come off it. If you are looking for alternative treatments there is a herb called butter bur which can help with migraine. X


Hey , B, I'm surprised that yours came on gradually like mine, I am also relieved that I am not the only one that started out like that. I was worried that I was the only one. Are you feeling better now? Over time? Do you have more good days than bad?.. Today I am feeling a better. I find that the depression and anxiety makes this a tougher journey, so I woke up with a new attitude. I'm going to make myself believe that I will get better. Ive been ignoring my wooziness all day, I went out for a walk with my two year old niece and kept my mind occupied and busy. I swear, a little bit of physical activity, and lots of positive thinking is really important with this. I sat around all yesterday, worried, crying and a wreck. I think I just need to learn and accept that I have a different life now, and to just cope.

I am still wondering if I should go pay for vrt or just keep active and get some excersises off of the Internet, is there much of a difference? .

My neuro wants me to get off the sibelium and try amiltryptyline, but I have read up on it and the side effects scare me. Has anyone tried it? Was it any good?!

Sarina


Alice, butter bur huh? Never heard of it. I mostly want to sleep. I have tried lots of herbs, but they only work for like one night. The sleep doc is who gave me the amitriptlyne...I've probably said that, but my memory super sucks too!!! It is better though. I was diagnosed with something called Benign Joint Hyper-mobility Syndrome. It just means I have always been way to flexible and now I am paying the price with bone growth in the joints. I always thought it was cool to be flexible!! It sucks now!!!

I need to get more mobile and adopt a healthier eating lifestyle. I am always so tired so I go for what is easier, plus being dizzy doesn't help with meal prep. I am hoping to get back on track. I know it is said to help, but I just think it makes everyone feel better in general. Sorry about the asthma. I will have to look up the syndrome you mentioned. I've learned so much since I've gotten sick!!! I feel I know more then most docs regarding about dizziness when I look at them and see their lack of comprehension of my illness. I'm sure you can relate.

Have a wonderful weekend!

B


Sarina, I am tons better. Physical activity is key and I did a lot of hiking in the beginning and it was hard. You can look up some VRT on the net and use those moves if you'd like. I did a few, but mostly just hiked and worked. Don't over do it and pay attention to what your body is telling you. You WILL get better.

B


Hey everyone,

Just an anxious guy looking for more reassurance if you'd be so kind. At this point in my LABS experience, my balance is perfect, I have no ringing in my ears or hearing loss, my ears seldom feel full, I can move my head in all directions without any dizziness, I have been doing yoga, golf, basketball, running, and can perform well with all of them. The only symptoms I have left are the occasional "off" feeling when I make a quick move and some subtle surreal/fuzzy vision. Also right when I wake up, unrelated to position change, my head/body kind of bob up and down for like 10 seconds then settle. To those experienced members who have seen people come and go, does this sound like I am nearly compensated? Maybe just a couple more tweaks here and there in the old brain? Any words of reassurance would make me feel great. It can't get worse from here right? If it does isn't that extremely rare? Thanks guys. Any response would be much appreciated.

Bobby


Hi Alice,

I know I've said this before, but after eliminating gluten I sleep like a baby. Have not had to take anything to sleep since I stopped eating gluten (about 4 months ago). I had horrible withdrawal symptoms for a few days, and then mood and anxiety stabilized and now I sleep like I used to when I was a teenager. Gluten does something to your brain that keeps it wired, and contributes to anxiety and sleeplessness in most people. I was getting hooked on sleeping pills and valium, and now have gone off them. Also, I told a friend of mine about this, and he decided to try cutting out gluten too, as he has had chronic insomnia for about 25 years. Well, he eliminated gluten and he sleeps now too. It's worth a try if you can't sleep. It helps with the anxiety too.


Sorry, last comment was meant for B!


Sarina, I think it's okay to do VRT exercises on your own rather than pay for a therapist, but you might want to see a therapist at least once to make sure you are doing them right. I tried doing them on my own and it wasn't helping, and then went to a therapist and was like, "OH, I see, I was doing it all wrong."

The ones you see on the web usually tell you to just do each exercise 20 times or so, but you have to actually do each one 300 times! And as rapidly as you can! Or, for at least 2 minutes. My VRT therapist said it takes a minute and a half for the brain to start making new connections, so the duration is the most important thing. You need to get a clock or a timer and time yourself. One minute will seem like an hour at first. Doing them right was SO HARD, I thought would die. It increased my anxiety a hundredfold, so that after doing them for fifteen minutes I would be shaking and crying. But after just two or three days of this, it started to get easier. I did them 5 times a day for the first 3 or 4 weeks, and this is when I saw the greatest improvement. I went from not being able to sit through 10 minutes of a movie in a theater to being able to sit through a whole movie, after about 3 weeks on the VRT. They will make you sick, but the more you do them the less sick they will make you, and then you will find that you don't get as sick during the rest of your day. I hope this helps. I can give you the specific exercises I did if you're interested.

Cheers, Anna


My anxiety levels have been through the roof. I didn't sleep all night, have no appetite & even had a huge anxiety attack today. Does this inner ear disorder have a part in that? I am just getting so depressed. I keep trying to force myself to think positive but at the end of the day it never fails, I worry so much.

B, you say you feel tons better, did it take you a long time to get there? .. I felt tons better as well for the past two months but I seem to be going through a slight relapse this week and it's made me a anxious wreck. Ill try to be more active, I took the week off of work and I think that was a huge mistake, being off my feet for days has only made me feel worse.

Anna, thanks for the advice! If you don't mind could you tell me what those excersises are? That would be a great help :).

I hope everyone is feeling good, and coping well. This illness is so heartbreaking, the ups and downs of it is rough. I hope every one of us recovers completely, no one deserves to feel awful for so long.

Sarina


I was diagnosed with labs 8 weeks ago which began with tingling in my right cheek then blocked feeling in my ear. One night got out if bed quick an was sick and dizzy. Then flu like symptoms for a number if weeks full pressured ears and tinnitus. The most scary part of all this is the strange scary symptoms like constant muscle twitches all over my body, a burning sensation on my legs and terrible neck pain. First thing in the morning I feel as though my arms are so weak an someone is pressing down on my shoulders. My gp thinks all these are related to anxiety and not labs an I have been given ssri sertraline to get through it ( I have a baby so laying in bed not an option) since taking the sertraline I have felt 10 times worse dizziness back etc etc. My question is has anyonc else taken ssri to help with the anxiety? And did it make your labs worse before it got better? I'm still not convinced anxiety was causing the muscle twitches


Hi Sarina,

The main exercises I did were these:

1. Tape the letter X to a wall at eye level. Stand several feet back and keep your eyes focused on the letter while moving your head 45º to the left and then to the right, as fast as you can while keeping the letter in focus. Do this for 2 minutes.

2. Repeat, moving your head up and down.

3. Write the letter X on a card or sticky note. Hold it at arm's length. Staying focused on the letter, move your head to the right and at the same time move the letter to the left. Then reverse. Increase speed as you are able, always keeping the letter in focus. Do this for 2 minutes.

4. Repeat, moving your head up and down (also with your head and the letter moving in reverse).

5. Tape 2 letters to the wall (I used Y and Z) , several feet apart. Stand several feet back. Move your eyes to the Y, then your head. Move your eyes to the Z, then your head. Repeat for 2 minutes. Make sure you move your eyes before you move your head. Eventually, try to do this faster and faster. Also practice moving your eyes before you move your head in general. My therapist said that helps with the dizziness.

More advanced, as you get better: do exercises 3 and 4 with the letter on a sticky note in the middle of a checkerboard. The checkerboard will make you very dizzy at first, but it helps you to improve faster.

After about 8 weeks there are more exercises you can do, but these should get you started. The first few weeks I did them 5 times a day, and it helped a lot.

I'm so sorry you're feeling so terrible. I felt like that too, but trust me, it will get better. Anxiety is definitely a big part of this illness. Your vestibular system is directly connected with your nervous system, so you WILL get involuntary anxiety - that is, anxiety that's not caused by psychological factors but by physical factors.

Take care and I hope you feel better,

Anna


I shouldn't type when I'm tired. Above quite a few posts I said Brad when I meant Binx. Sorry about that. However, I very glad that Brad is feeling much better too!! Oopsy.

Sarina, I posted above that I had frequent relapses up until about nine months and then they started to lessen in frequency and severity. It is a very slow process and I still have bad days. My bad days now are nothing compared to the ones I had in the first six months. There are so many symptoms that come with this that I could not name them all. Look above at a post from Binx and he puts a pretty comprehensive list of symptoms he experienced. Anxiety is HUGE in this. Your body reacts to the dizziness with it. It gets better eventually, but it takes forever and it can be depressing. If you feel overwhelmed with depression you should talk to someone there are meds that help build serotonin and that is said to help heal the damage to the inner ear. You can also request something for the anxiety. Take care of yourself. We all understand and we have all been there. Use this site often for a sounding board and support. Keep your head up! You will get better!!

Anna, thanks for the suggestion. I will try to pull that together eventually. I am hoping to change my eating habits for good someday soon. I'm so very glad it has worked for you!!

Madi, get a few opinions if you can. You need to feel better. Anxiety can cause a lot of different symptoms, but it seems that is always what the healthcare professionals blame these symptoms on. I'm sorry you are ill. Take good care of yourself. Keep us posted.

B


I was diagnosed with labs 8 weeks ago which began with tingling in my right cheek then blocked feeling in my ear. One night got out if bed quick an was sick and dizzy. Then flu like symptoms for a number if weeks full pressured ears and tinnitus. The most scary part of all this is the strange scary symptoms like constant muscle twitches all over my body, a burning sensation on my legs and terrible neck pain. First thing in the morning I feel as though my arms are so weak an someone is pressing down on my shoulders. My gp thinks all these are related to anxiety and not labs an I have been given ssri sertraline to get through it ( I have a baby so laying in bed not an option) since taking the sertraline I have felt 10 times worse dizziness back etc etc. My question is has anyonc else taken ssri to help with the anxiety? And did it make your labs worse before it got better? I'm still not convinced anxiety was causing the muscle twitches


Hi Madi, just to let you know that I have muscle twitches too. It started as pins and needles and then turned into muscle twitching and sometimes I have pain. Every doctor I have seen says it's anxiety brought on by dizziness. I haven't taken any meds though. However when I researched these symptoms online, I found a condition called benign fasciculation syndrome which is quite a common reaction to a virus and includes muscle twitching etc and can last for a while but is harmless. There are several other conditions and illnesses that can also bring on muscle twitching, although less common than anxiety or BFS, so go back to your doctor if you are concerned. I feel for you having this with a baby, I have two little ones and it has been very difficult. Good luck


How rare is it to suffer long term? I mean do most cases completely clear within a few months? Does anyone know the statistics? Since I have not gotten worse, I'm assuming I'm one of the "most cases." how common is it to suffer long term, meaning 5 months to years?


Bobby, You can look up statistics online. It is really rare, but read through these pages and you can find the people who have been suffering long term. There are no concrete answers and I'm sorry about that. Most cases DO heal in a reasonable amount of time. It can take six to 18 months for the nerve to heal. It is a waiting game and no one can tell you when you will be better. The fact that you are getting better as each day passes is a good sign. Keep on doing what you're doing! You are going to beat this.

B


Hi Everyone - I'm new here. I've had this condition for 3 months now with no real improvement. Had bloodwork, mri, echocardiogram, etc. all normal. The kicker is, I've had this condition before - 20 years ago when I was 24. Back then, I went to 12 different doctors and had dozens of tests - all normal except for a caloric test which showed a weakness in the right side of my vestibular system. The ENT told me that my brain would compensate but would take a long time (back then they really didn't have vestibular rehab therapy). Well, he was right - it took the better part of 2 years to be dizzy-free. Over the next 20 years I've had occasional dizzy moments that lasted a couple of hours or a half-day but nothing more. Here I am again, though. I believe this might be de-compensation due to extreme stress, anxiety and grief in my life. I'm doing some physical therapy but not seeing any improvement yet. I'm holding out hope though because I've had this before and came through to the other side and I'll do it again!! Best to all of you. Rissa


Hi everyone - new to this site. I've had this condition for 3 months now with no real improvement yet. Had some tests done (mri, bloodwork, echocardiogram) all normal. Caloric test showed some abnormal nystagmus and indicates a small problem with one side of vestibular system. Here's the kicker - I had this condition 20 years ago. Back then I had dozens of tests and went to 12 different doctors. All tests were normal except for caloric which showed a definite weakness on the right side of inner ear. The doc said my brain would compensate but would take a long time. He was exactly right - it took the better part of 2 years to get dizzy-free. During that time I was still able to work and force myself to carry on with a lot of things. This time around I'm having a harder time (dizziness is worse and having balance issues) - it might have something to do with age - I'm not 24 anymore! I believe I have decompensation due to extreme stress anxiety and grief in my life right now. I've been through a lot in the past year. I'm holding out hope because I've been there, done that and came through to the other side! Best to all of you. Rissa


B, thanks for the info. Do you know where I can find statistics? I searched and couldn't find anything specific.


Thanks for the excersises Anna! Is it normal for them to make you extra dizzy temporarily? I tried them out and felt extra woozy for a bit. No big deal though.

B, well I'm glad to hear your improving & that gives me a lot of hope for myself. Do you ever have symptom free days? Or does it always lurk about.. In the very beginning, I got full on labs in August and all of September I was completely dizzy free, October.. It returned and worse & has been constant but slightly better since than. So up and down but I must say I miss the month of September, and I hope I get to a point were its completely gone or barely affects me soon.

I'm still having major sleeping problems which have been going on all week! I've never ever had issues before but I toss and turn all night long. I wonder if it's part of labs.

I'm starting to wonder if I have vn rather than vl, I have perfect hearing and only mild tinnitus here and there but I've always had that. I just deal with balance issues, in the beginning walking was really tough and I felt lightheaded. Than it changed to a bobbing up and down sensation when walking or even sitting, now it's a more rocking vertigo here and there and the floor is slightly unsteady beneath my feet. Strange how the symptoms change over time. I'm glad the bobbing sensation subsided, that one made me feel the weirdest lol.


Anna, your therapy is very close to mine as well as the approach. I am under the care of a chiropractor/functional neurologist with amazing results. I also do many eye excercises as well as vestibular stimulation. Its amazing how much the eyes are involved but are overlooked by many people . Driving or computers will wear on me as well as lack of sleep is a killer. The neurological pathways in the brain are amazing, and my Dr. Puts alot of emphasis on rebuilding the entire system. Its been maybe 3 months for me and the results are fantastic. It will be 3 years this Monday that will be the anniversary of this neurological malfunction, if anything it has been interesting? And terrible! Mike


Hi everyone, does anyone out there with MAV get worse when the weather is foggy? I have permanent dull ache in eyes and nose and feel much more dizzy and spaced out when the weather becomes foggy. Also, has anyone recovered from MAV without medication? Does it eventually improve like labs or are you stuck with it if you don't take the meds?

I was thinking of avoiding meds until yesterday when I had a dizzy fall, ended up in hospital yet again and now on crutches!! So much for the lucky charms I was bought for Xmas!


Bobby, I don't remember where. I know that it is usually a 2 to 3 months thing. My dentist had it for 6 weeks and recovered. I think that some of us on here are just the unlucky few who have been suffering for months and years. It is a gamble. In the beginning I made myself crazy thinking all the time that I can't be sick even another day, but eventually I just started to calm down and get used to it...in a way. I don't freak out anymore when I feel like I'm being pushed to the side or like I got spun in a circle. I just remember that I have this thing and it is tricky.

Sarina, I don't think I have any totally symptom free days, but have MOSTLY symptom free days. Between roughly 4 and 6 months I had 3 or 4 days in a row ever so often that were symptom free and required no meds. That changed, as this thing often does, and now it is less, but everyday. I am at roughly 90% each day or more. I have had a hard time getting back to good since our trip to Seattle, but am getting there.

Mike, I am so excited for you! I hope that you are a brand new man ASAP! Thank you for sharing!

Good health all!

B


Started with vestibular rehab therapy last month, but I wasn't too happy with the physical therapist. It's my understanding that they're supposed to start out slowly then increase the exercises over time. The first 3 appointments were horrible - she made me do all kinds of advanced things (shaking my head back and forth as fast as I can looking at a target for 1-2 minutes, walking while turning my head from side to side, up and down, diagonal, walking backwards doing the same thing, balancing on an unstable foam mat while shaking my head back and forth, etc. etc.) for an entire hour with no rest period. My brain felt like a bowl full of jelly. My chiropractor said that the pt did waaaay too much with me and crashed my system. The next 2 weeks I felt horrendous. So now I'm just going slowly with some exercises and trying to walk as much as possible. So frustrating!

It's hard to try to find a balance between enough activity and enough rest. I'm on short term disability leave from work and I'm trying to keep occupied by doing stuff around the house, but it gets me down sometimes because I'd much rather be at work. Every day I have constant swirling, and rocking motion in my head and find it hard to walk because it feels like the ground is unstable. I can't drive - only sometimes and for short distances only.

Back to the physical therapist - she seems to think this dizziness is mostly anxiety related - even though my caloric test showed a weakness on the right side of my inner ear. I just think she was doing me more harm than good, so I stopped going.

All the best, Rissa


Sarina, yes, they will make you extra dizzy at first, but then you will be less dizzy the rest of the time. Very worth it!

So I had a very strange experience last night. I went to a class where there was this sort of group meditation, and I got the worst most awful vestibular migraine, worse than anything I've had for months. My head is still inflamed all over. So there were about 20 people, and we mostly just sat in a circle. At some point we closed our eyes and had to imagine energy flowing throughout our bodies, and then around the circle. Other people were reporting feeling high and great and all sorts of good things, but I felt nothing but rotten. It was the most excited my vestibular system has been in a long time, and it felt like the equivalent of drinking several glasses of wine (in a bad way). This made me wonder if getting sick in crowds has something to do with not just the eyes getting overstimulated, but the "general energy" getting overstimulated. I know this sounds crazy, and maybe it was just the drive over there and having to sit for so long, but the "buzz" in my head is unmistakable and scary. This makes me interested in finding out moire about how the vestibular system works, and how much of it can be affected by the mental.

I've never done anything like this before, so I have nothing to compare it to in terms of how it SHOULD feel. But I think what happened is, everyone got "high" in that room on nothing but the group energy, which for most people feels good, but for a vestibularly challenged person is a nightmare equivalent to riding a rollercoaster. Does anyone have any thoughts on this?

Love, Anna


Hi Anna, if you have same problem as me which my physio described as 'visual vertigo' then I think your brain relies too much on your eyes rather than the inner ear to stabilise you. When your vision gets overwhelmed by lots of patterns to look at or people or lights etc, then you start to feel woozy as the eyes are unable to balance you aswell as take in so much info. I think this process then creates hyper excitable neurons in the brain which causes blood vessels to contract and dilate and a migraine is then triggered with more dizziness and so it goes on until you go nuts!

Maybe looking at all those faces in the circle or the lights or something in the environment started the whole process. I think migraine prevention pills help keep neurons calm so that then you work on strengthening inner ear through VRT so once you come off meds you are not relying just on your eyes. I don't know whether this process would just come to an end without medication but finally I am thinking of taking the pills.


Im starting to get really worried. I used to feel fine when I was laying down, no problem. But now when I try to sleep I feel a lot of internal movements and like there are marbles in my head. I used to wake up and feel the best, my mornings were always easy and symptom free for awhile. Now when I wake up my vision is really shaky and everything sways back and forth really fast. I feel my worst in the morning now. Has anyone's dizzy ness changed like that? I though I was over the worst of it! Wow I hate these new symptoms they are so terrible..

Sarina


Hi Alice,

I definitely have visual vertigo! Your post and also Mike's posts make me think I have to go back on the VRT, as I seem to be decompensating somewhat. I want to stay off meds if possible. From what I hear, they can cause worse rebound headaches over time. I know some people do really well with them though.

Sarina, the same exact thing happened to me a few months in, where mornings suddenly were awful. Actually, they still are the worst time for me, although I do have some mornings now where I feel okay. I don't start to feel better until after lunch usually, when the nausea and dizziness and head pressure subside somewhat. I've read on these posts that most people have the hardest time with mornings. I wonder if we decompensate during the night while sleeping? Please take care! It will get better! And I think the VRT should help a lot.


Sarina, do you sleep with your head elevated? I sleep on a wedge pillow with another pillow on top and it helps. I also only sleep on my right side (that's the side I have the vestibular weakness on). Sleeping on my left side is not good for me right now. I've had dizziness pretty much non-stop for 3 months along with balance problems. My symptoms fluctuate all day long - when I'm horrendously dizzy I have to hold onto everything and can hardly walk. Sometimes I'll feel more steady, sometimes my eyes will bother me, etc. Mornings are usually kinda worse for me and the symptoms calm down a little during the day, BUT that's not always the case. I completely understand your frustration!!

Have you had any tests done? A caloric test might help determine if there's any diminished function on either side of your inner ear (usually done by an ENT doc). I see by your posts you've been having trouble with your doctors.

Good luck and take care, Rissa


Anna, thanks for taking the time to reply and answer my question. How long have you been dealing with labs for yourself?

I've been thinking about this a lot & I'm wondering if anyone knows if there is a link between alcohol & inner ear dysfunction. Back in time, I had my first "bout of labs" which didn't begin with the common room spinning vertigo, but with a constant lightheadedness, off feeling, that gradually turned into more symptoms of unbalance & dizzyness. It only lasted just over a month and I had a completely symptom free month following it. I can now recall that I drank tons of cheap wine and was having a stressful week, during my time of being normal. And when I woke up one morning, a little hungover, my labs/vn was back, and has been since. This bout is way worse, and I've experienced many scary symptoms. What scares me is I don't have the typical case following any viral sickness, but more of a gradual process of feeling more and more weird, it going away & than coming back. Can alcohol cause labrynthitis? I used to binge drink & not take good care of myself and with time the feelings of lightheadedness & unsteadiness kept coming and going and getting much much worse. It's funny because I'm rarely lightheaded now, more unsteady and I experience the floor moving under my feet a lot. My diZzyness has changed drastically since it came back. I don't drink or do anything at all anymore which is depressing because everyone around me does. But I'd rather have good health.

Sarina


Sarina, I was struck down suddenly a little over a year ago, a few days after Christmas. It was also after drinking cheap wine. I only had two glasses, but it was really nasty cheap wine that I'm not used to, and the glasses were so full it was really like drinking four glasses. I couldn't sleep and was sweating which I never do, and shivering. I got up to go to the bathroom in the middle of the night and made it there okay, but on the way back the room started spinning and I almost didn't make it back to the bed. I attributed it to possible food poisoning, and just tried to sleep it off. But the next morning the room was spinning like crazy and I couldn't move my head at all without vomiting. Then on to the ER, and slowly learning to walk and move again over the months. Seriously, it was like having a mini-stroke. I don't think I will ever touch a drop of alcohol again, as I'm clearly allergic. Being careful about my diet has helped: no gluten or dairy, hardly any sugar, no processed foods. Being allergic to wine could be an allergy to tannins, so I'm careful about that too, although I still drink tea. My health has steadily improved over the year, but it's been a very slow process. Since I now seem to have some chronic migraine condition, diet has been key. Good luck. I'm so sorry you're going through all that. I hope this is just a blip and that you'll get over it soon.


Anna, wow! That's really surprising that the same thing happened to you, that had happened to me. It seems that poor diet, (I would eat mainly fast foods), consumption of alcohol and lack of rest is what made me land in this position with having inner ear problems. I don't normally get sick with viruses nor have I ever really had ear or sinus problems, I think it was my life style that ruined my balance.. If that is even possible. It's the only thing I can think of for myself. Anyways you say you've had this for a year? Do you have more good days than bad?! I hope mostly good days, we all deserve those..

I went for a ton of bloodwork awhile ago and I get results tomorrow, not sure if anything significant will show up but who knows. I am also going to completely change my diet tomorrow and continue with it and see if anything good comes out of it. Cutting down on salt & sugar, to be honest I haven't improved my diet much and sometimes I wonder if the things I'm consuming is what is making things worse lately. I guess time will tell :) .

Sarina


Hi everyone, has anyone tried amiltriptyline and had good results? I finally have the meds but just wondering if anyone has tried this for MAV? I saw my VRT physio today, she is convinced that taking these meds plus VRT will work. She said she sees a large number of people with this condition. I now have been given lots of different clips on YouTube to watch as part of the VRT that involve crowds, shopping, playgrounds etc

I am sure alcohol makes this all worse, my symptoms definitely got worse one weekend after just one glass of wine so I am off all alcohol. Sarina, hang on in there, maybe just have one session with a VRT Physio as they can design exercises just for you. I was doing 30 mins a day of cawthorne exercises from the Internet which triggered eye pain but when I saw VRT lady she started me off on only 3 mins a day to begin with and I was given different exercises to the ones I had been doing. I have now slowly been building up the time i spend on them. This illness is pretty scary and plays on your mind as it affects your perception of everything around you but somehow doing these exercises at least makes you feel you might be doing something that will help x


Axnna & Sarina alcohol will screw you up with this problem. Alcohol effects your cerebellum and for me this is where my problem is. The cerebellum is where the bodies signals for balance meets with the rest of the vestibular system. I think the labrynthitis is not correct for me and maybe all of us because ive never had any hearing problems and its been three years for me and thats not labrynthitis. Vestibular neuritis is a better term but then again it doesnt last this long, but there is no hearing loss with VN. Whatever it is and my Dr. Told me that a person with this will rarely find the cause. It seems that I had something that did damage too my vetibular system/cerebellum and it weekened it its "out of shape" my Dr. will do excercises to strengthen my system but not exhaust it, same as going to the gym you would not work out an injured leg and push it to exhaustion or further injury. The idea of compensation is true but we take the approach of fixing the correct system rather than trying to teach your brain to compensate and other areas to make up for the injured area, lets fix the injury then build it up, slowly. A large majority of my rehab is visual and now with compliant surfaces but he will do the rehab with a pulse ox on my finger to read my stress levels as far as blod pressure and when it goes too high we stop, if we would keep going it would exhaust my system and cause further damage and a ew more days of feeling krappy. I have learned to get quality sleep and know what bothers me, this has been a big stress reliever since i dont worry about what I ate yesterday or this morning. Up to now if i feel a little off each day its way better than what my previous days were like and i recover much quicker, like being in shape you can play a sport be tired take a break and you are ready to go again.

Rissa i too could not sleep on my right side until recently, but i can if my system is not compromised and im well rested, if not I will get uncomfortable feelings. I hope this helps any questions please let me know, and look up brain based therapy and its approach to this problem

And the term MIGRAINE ASSOCIATED VERTIGO usually means the dr. Doesnt know what to call it, I was diagnosed with this and medicated as well. Its a waste paper basket term.


Mike, is the anonymous you? My neruo straight up told me she didn't know what was wrong with me, but since I have a history of migraine she thought we'd give some meds a shot. I have done pretty well on the beta-blocker, but it is there still, just not as bad. Alice, I have not tried to take the amitriptyline yet. I am a chicken when it comes to meds, but I do know that Chuck took it for sleep and had good results in that respect. It took me at least a month to work myself up to take the beta-blocker so I am still working on it! =) I may just get so I tried I take it, but we'll see. Let me know if you work up to it too!! I'm going to cut my pills in half when I finally do and start small. Serina, alcohol is def a problem with this as it puts you off balance even more. I don't know if it is a cause, but I don't think many folks know the cause anyway. My dizzy spells just started one day and kept coming here and there and got a bit worse in severity over about a year and then poof it became full time. Who knows why, but I had swine flu a few months before it all began and was horribly sick. I have allergies and sinus issues too so it could have been anything. It changes constantly and is unpredictable at times. Have you had a mri or any scans? I would recommend that as it can put your mind at ease regarding feared serious conditions. However, I do know they are expensive. It helped me some though. It took a long time for me to feel calmish about this and I have gradually improved over the last 14 mo. I still get a surge of anxiety, but I have always had mild to moderate anxiety. It has taken me a very long time and a lot of being freaked out and worried. I tried changing my diet and caffeine intake, but that didn't make much of a difference, only time. I'm still in progress. Get some homeopathic Calms or Valerian root to help with stress and anxiety. You can even ask your doc for some anxiety meds as they have an effect of calming on the inner ear too and lessen the dizziness! Bobby, I hope you are getting some relief.

I hope everyone is feeling a bit better each day. I'll think the good thoughts for all of us!!! Good health! B


Hi everyone,

Alice, I was prescribed that same drug.. And I haven't taken it yet because I'm unsure about it too. I take sibelium, a calcium channel blocker migraine preventative & have had no side effects and it seems to help a little bit. How have you been these days? How long have you been dizzy for?!.

Anonymous, what in the world is brain based therapy?!? It sounds neat, how does it work?!

B, did you say most people don't know the cause of their labs/vn? Yeah well I sure don't. Like I said, no virus or sickness or initial awful onset of symptoms for me, just gradual stuff. I read back on these pages of comments and it seems like my case isn't like anybody else's :(. Swine flu? Eek! That's awful! Poor you!! Have you been doing better these days? I hope so, 14 months seems like so so long. I've only been dealing with this for about six months, I had spells of lightheadedness & slow motion vision (felt kind of detached from reality) for a few months before all of the other junk really set in. I dont know if that counts, but these six months have been the longest six months of my life! I'm running out of patience, there is so much I want to do with my life, this time a year ago I was a party animal, enjoying being 18.. I feel eighty years old now. ANYWAYS! (sorry had to rant), I have an MRI scheduled for jan.30. It won't cost me anything. Thank goodness. I'm so nervous! Did you ever get one done? Sometimes I fear I have a tumor.. This illness is so weird.

Does anyone know If the nerve that's all messed up & sending dodgy signals heals at all? What if the brain fails to ever compensate or it doesn't heal? Is that possible? I am TERRIFIED, that this will be forever.

I want good health for us ALL.

Sarina


B yes its mike sorry firgot to type my name, yes ive had every test you name it and some twice, im 100% healthy. I have been to my general dr., a neurologist, an ENT and a vestibular specialist, and none of them know what to do. It is very frustrating and humbling as well as an overwhelming feeling of being helpless. No one understands because you look fine. I tell everyone i have Post Concussion "LIKE" Symptoms, most people understand that especially if they watch sports. And medically speaking the symptoms i have/had are the same.


Hey there guys, i have just recovered from a five-year bout of vertigo which i thought i would have for the rest of my life- in fact i remember reading this forum way back then and hoping i would not be one of the poor suffers who keeps going to a million different doctors but gets nowhere, and then i was! However i had a breakthrough in June last year when i went to see a kinesiologist (for an altogether different reason than for the vertigo initially). He very quickly worked out that it had been my neck causing the crippling vertigo/dizziness/weird ear symptoms/tinnitus/migraines. To be honest at first i was very skeptical, as i honestly didn't think it could be that, And had been checked out by an osteo when i first got the vertigo 4.5 years earlier who said my neck was fine. However, after seeing the kinesiologist and getting regular treatment on the neck (via biomesotherapy to be exact) for a bulging disc i never knew that i had, 3 months later and i was vertigo free for the first time in FIVE years!!!

So.. unfortunately i haven't had a chance to read everyone's stories, but all i wanted to ask was has anyone had their neck checked - and/or do they have a sore neck? I can't tell you (well actually i'm sure you would all know considering how insanely AWFUL this condition is, i try not to think of the hell i was in everyday for those years) how good it is to finally have my life back, i truly thought about ending it so many times. i am only 30 and it just seemed so cruel to be struck down and not really know how or why, or where else to go with it. But please if anyone has any questions to ask me about my treatment or symptoms i am more than happy to answer them all, i am just so happy and relieved to be rid of it and i just want to help anyone if i can.

I am still rather anxious and have bad dreams most nights, but it's all getting easier day by day. i've had to start doing clinical pilates to strengthen my body and weights to strengthen my neck and shoulders to make sure i don't get it back again and again. the only times it does come back if at all is when i overdo my muscles, but then it goes away again after a few days as they rest. I don't remember even hurting my neck in the first place, but the kinesiologist (who has treated a lot of cases of vertigo and most due to the neck) said it could have been something relatively minor, like in the car. (i am just tall and slender so perhaps more prone to this happening).

I really hope the best for everyone out there suffering from this, it's really a very debilitating state to be in and rather isolating i found! nonetheless, it can get better and completely go away. Be well!! but feel free to message!!

R.M


R.M. my chiropractor / functional neurologist is also sure that my neck was the cause and works it, i also had some discs out. He then goes to the next step the neurological / brain pathways which is so interesting and I have also have had great results in the 3/4 months since ive started treatment.


R.M, I very much think it is the culprit!! So glad you are recovering! When my neck is flared up I have more symptoms. I had a bad car wreak as a toddler and went head first into the windshield and have had a rough neck since I was a teen. It has gotten worse over the years and my pt thinks it is very related to my neck. I don't think the drs look close enough. I think they don't listen and don't care. What a relief that you have found a solution. It is just more proof that we should never give up.

Serina, the nerve can heal, it takes time, but it heals. It is scary, but you need to find some ways to reduce your anxiety and stress so you can have some peace. I know how horrible and scary it is, but you will get better. You are young and this will pass. Yes, I am lots better then I was at six months.

Mike I know what you mean when you say post concussion like symptoms. I have had a few and, if I think about it, you are absolutely right! That surreal feeling and visual distortions. Good comparison!

I am wondering about young Sidney and her mom. How are you guys??? Is Sidney any better? I always think about you! And all the others too! Check in and let us know how you are doing...Jemma, Gloria, Claire, Lucy, Wendy, Ashley.....and others I can't think of now! I just know you have to be doing MUCH better!!!

The usual good thoughts!

B


Hi everyone, RM it's so interesting to hear that the cause of all your suffering is in the neck. I went to see my doctor recently and he examined my neck which has been really hurting since my labs started and he thinks there is a link, I am now seeing his physio and have to do special stretches every day with a band. However the VRT physio thinks there is no connection at all so I have no idea who to believe but I am doing both sets of exercises. RM did you have a scan to reveal bulging disk? How were you treated? Did u have headaches? You must be so relieved to be free of this and able to get on with your life. A lot of the time I feel trapped inside this dizzy limbo just waiting to be able to start living again. Its definitely the worst thing i have ever been through.

Sarina, i have had this for just over six months, bit like you. The last couple of days have been pretty awful with terrible pressure and pain in face and head and dizzy/surreal feelings. I have the amiltriptyline by my bed, keep hoping there will be a miracle and I won't need to take it!

B, you always sound so positive, you have obviously found a good way of dealing with this, did this coincide with feeling a bit better or did you just decide to think about it in a different way?

Good health to u all x


B, and Mike, that's interesting that you've had some neck issues. I've read some articles on 'cervical vertigo' as they call it, and although it's recognised as a form of vertigo there seems a lot of mystery surrounding how to treat it. A lot of people seem to get it as a result of whiplash in a car crash/sudden stopping, and doctors just don't seem to know what to do to help them. I think sometimes western medicine fails in cases like this- but there are other options.

What I found interesting was that the whole time i had the vertigo (it was pretty much 24/7, and only seemed to fluctuate in terms of intensity but never went away until last year) the ONLY thing that seemed to relieve it at all was taking anxiety medication - like some of you have mentioned doing. Of course my anxiety was through the roof the whole time, but what i think now is that the medication worked so well because it is a muscle relaxant and obviously calmed the nerves including those in my neck disturbing my balance signals. My balance would worsen after doing exercise, probably due to overworking the neck muscles and causing more strain.

I was lucky in that I found a good doctor (kinesiologist) who has treated a lot of patients with this form of vertigo and fixed all of them - he uses 'biomesotherapy' which is a series of homeopathic injections into the trigger points around the problem area. (using the same points as acupuncture does). i went to so many ENT specialists that only said vague things like 'the neck can contribute to the problem (vertigo) but is not the source' etc etc but for me the neck turned out to be the problem, 100 %. So there is some disagreement about the cause of these problems, but i would say to anyone that might be dissatisfied with getting vague answers to keep pursuing other treatments - kinesiology is one of the few alternative therapies that has some medical approval if that helps anyone unsure about it.

I don't know where a lot of you are from, but i live in Australia and we have only had biomesotherapy for 5 years now, whereas it's been used throughout Europe for a lot longer. I couldn't believe that after so many years of having this mysterious 'inner ear dysfunction' someone was able to so quickly identify where the problem was, and to fix it. and it wasn't the ear!! I would urge anyone who is dissatisfied with the answers they're getting to ask around about this kind of treatment and/or find a good kinesiologist who uses it. Reading all of your posts makes me remember being in that same, awful and scary place where you're just hoping that the next day it will get better.. don't lost that hope!! i got better!!


..p.s i meant to say that a kinesiologist can test to see what is causing the vertigo, whether it's the ear, the brain, the vertibrae, the neck.. etc. So i would think that even if your neck is not the issue, that should be able to identify what is, and give you the corresponding treatment.

R.M xx


B, thanks for the positive encouragement, I'm glad you are doing better than earlier on and that really gives me hope :).

Alice, that's too bad, I felt like that for awhile earlier this month, I was really improving than waaaaam, after Christmas felt like crap. Not sure why, but I know how you feel. I hope you get over that soon! Have you had any good days over the six months?!?

Is there a link between concussions & "labs". I've had two concussions, one after a car accident three years ago and one a few months before the dizzys, last spring. Could my second concussion have something to do with my labs/vn/mystery dizzy illness?! I had a ct scan done and it was normal. Hmm.. I also had a little bit of neck pain at the time. I don't have any neck pain now, at all. Could something in my neck/head be damaged? Without the neck pain? Anyone know? Please fill me in if you do! I just want to figure out what the heck caused this, I may never figure it out. But I'll try.

Sarina


Alice, I am lots better so that helps me greatly!! I enjoyed every healthy day to the fullest and hated every bad one with as much. Plus anxiety meds are helpful! The neck is related to dizziness in that it tightens to compensate for the off feeling the body is suffering from to make it feel more steady. That is just a medical fact. I do believe that ultimately the dizziness can come from it being injured/out too! I have the best physical therapist and she is wise. I'm pretty tired so I am closer to taking that amitriptyline!! I have known others who have taken it's close "relative" and the worst they reported is dry mouth and sleepiness! I want to be sleepy!

Serina, I did have a MRI and it was clear. It pissed me off as I wanted a reason for being so ill, but it was a relief to know there was no serious cause. Good luck with yours.

We've gotten two feet of snow in two days so I have been shoveling and shoveling! My neck is horribly tight and I am all sorts of icky! It will get better. Stress is a huge culprit!

Take great care all. B


R.M., Great point about the anxiety meds! I get tremendous relief from them and they are the only thing that can keep it at bay. The anxiety from this is insane! I am so sorry you suffered for so very long! Thank you for sharing your wisdom! Our Drs let us down with this over and over. They never take it seriously! I rely on my pt now. We work on my muscles, which are tight all over my entire body, and I got better. I'm not all better and am having a bit of a relapse now, but my muscles are all out of whack again sooooo....I see a connection. I always have. I think I even posted it on here a long time ago. I will look up your txt. I am in Montana, USA so I don't know what we have with regards to that. I hope you are never ever dizzy again!!!! Thank you. Take care. B


Hi B, I am also closer to taking the amiltriptyline and probably will start at end of week when my husband is back from a trip incase it turns me into a zombie with the kids (although they r used to that by now). What dose r u starting on? I wanted to ask whether your headaches got better aswell as the dizziness since this started for you? My problems are really triggered by hormones, once a month I feel knocked off my feet with this, shops turn into a hazy nightmare and pressure in face and head get alot worse, I imagine that is linked to migraine.

Sarina, good luck for your MRI scan. Take someone with you if you can. I am sure they will be able to tell if something has happened as a result of your accidents from the MRI but I would definitely mention this to the person doing the scan so they can reassure you. I spoke to the radiologist before my scan and basically asked what he would be looking for and he explained everything afterwards. However some hospitals if very big don't have the radiologist there when you have the scan so u get the results from your doctor.

In the last six months I would say I have had some terrible days, bad days and ok days. Usually I am worse in the morning and start feeling human in the evening. It's so hard to tell if there has been an improvement but I do remember not coping with any busy environments at all and having to leave places. I now find them uncomfortable especially supermarkets and the worst is a bookshop (where i am literally going cross eyed!) but not unbearable. Not sure if I am improving or just getting used to it.

Xx


Alice, the sleep doc says to take it two hours before bed so it doesn't make you as groggy when you wake up. If and when I will take 12.5mg. I haven't had a migraine in about 8 years. I have tension and muscular headaches often. Good luck, lady! =)

B


Thanks B, that's good to know, I am starting my first dose tomorrow so will let u know how it goes x


I had a quick question regarding VRT for the more experienced members. In your recovery did you continue VRT until the very vanishing of ALL symptoms? As of now my balance is perfect but I still have fuzzy/surreal/disconnected and tired vision. Can VRT help with this too or is it only for balance? Also is there any danger to doing VRT? Like training my brain to do the wrong thing? Feedback would be very appreciated.


Ugh my work cut my hours to make room for new employees, do I've been under a lot of stress during the past few days. Stress and labs don't do well together that's for sure. I will be working once a week now, totally unfair and I don't know how I'm going to live. I guess I'll have lots of time to "heal". I want to find a new job, but I'm afraid of my labs coming in the way.. What if I'm in an interview and I get completely wobbly, and not to mention my head having to adjust to a new workplace! I was comfortable at my job, which helped with my symptoms. This really sucks! I wouldn't be stressed at all if I didn't have this inner ear problem...

B, your going through a relapse right now? That's too bad. I hope it's just a blip and you get over it ASAP, I know it's difficult to have setbacks when you are improving..

Alice, I'm sorry that your having a hard time with labs, progress feels so slow. Like you I have had many bad days in the past six months! Hopefully we both get lucky and begin to recover quickly. I completely feel the same way, I feel like I'm stuck in dizzy limbo too. Just waiting for LIFE to begin again.

My family has been pressuring me to just cope and ignore my disorder, easier said than done. They just don't understand. I don't get angry towards them because I know it's hard to understand. I will try to enjoy everyday, this illness may make my quality of life terrible, but I just need to smile and enjoy the day for what it is. My motto is, "when life puts you in tough situations, don't say "why me", just say "try me!".

Sarina


B, I know what you mean about being pissed that your MRI was clear, but my MRI was not clear and it hasn't really resolved anything, as they insisted that it had nothing to do with my ear. In my case they said it was peripheral, as there was 70% loss of function in one of my ears according to the VNG test, but the neurologist had absolutely nothing to say about what all of the lesions in the white matter of my brain could possibly be. All they said was to wait a few months and have another MRI to see if it's gotten any worse. Well I had to do my own research to find that with these lesions I have a 30% chance of getting MS in the next 5 years, and that a gluten-free diet has helped many people with MS to reverse their symptoms. I also have ataxia and sudden joint pain, along with my ear symptoms, and severe neck problems as well (exacerbated I'm sure by the VN but also from the work I do). Then on top of it all, I have chronic migraines and head pressure and of course the dizziness and nausea, especially in the mornings.Of course all of that is a lot better now, but on my bad days it's still pretty bad.

I find that anything that helps to relax my muscles helps a lot (massage, hot baths, stretching), and that I have to be very careful about my diet to not make the inflammation worse. If I am VERY vigilant, my symptoms do seem to subside quite a bit. My new strategy is to eat as many non-inflammatory foods as possible, so lots of fruits and vegetables. I never was a fruit eater before, but I find that having a daily fruit smoothie and two salads a day seems to decrease the pressure in my head somewhat, as does walking. But the strange thing with the walking is that sometimes it makes my head worse initially, like it's going to explode. It gets very heated up, and feels like there are all sorts of things short-circuiting in there! Does anyone else have that Frankenstein-monster feeling when walking?


I wanted to add, I've read medical articles since my MRI that have linked white matter brain lesions with vestibular neuritis. The doctors insisted that there was no connection between my inner ear problems and my MRI results, but how can they know that the episode that caused the vestibular problem did not also cause the damage to the nerves in my brain? A virus, an infection, or an allergy can cause systemic problems anywhere in the body. They act as if the body is a series of disconnected parts instead of a whole - as if it's a series of chapters or paragraphs in a medical textbook. They don't think organically about the body. They also insisted that drinking wine had nothing to do with it, and that my sudden migraines were not connected with it.

The fact is that doctors know VERY LITTLE about the inner ear, and they can only make guesses most of the time based on descriptions of patients' symptoms. My neurotologist even admitted this to me. His first sentence when I stepped into his office: "We know very little abut the inner ear..."


Anna, I do have a weird head while and after walking...sometimes. It does go away after a bit when I'm done. When I walk all the time it is less frequent. I know all about the joint pain, but it all predates the dizziness. Sorry about your lesions. Sounds horrible, but if they are not concerned then you shouldn't let yourself worry too much. My advice would be to sit down and demand they tell you what they are and why they are not worried. I think you are a rock star to watch your diet that much. I did some eliminations for like 5 or six months, but it made no difference. I refuse to live without coffee! I hope you get some answers! Fill us in when you do. I know about the pressure in the head and I blame my sinuses for that feeling. Sorry you are still suffering from migraines. I know how horrible are and am so glad I haven't had a full on attack in about 8 years. I had them bad before that since I was 11. Mine were more hormone related. My neuro would disagree that I no longer get them, but I don't. Good luck.

Serina, I understand the fear of finding a new job. I have always worked, but just part time. Do what you can do.

Take care and be well!

B


I had a quick question regarding VRT for the more experienced members. In your recovery did you continue VRT until the very vanishing of ALL symptoms? As of now my balance is perfect but I still have fuzzy/surreal/disconnected and tired vision. Can VRT help with this too or is it only for balance? Also is there any danger to doing VRT? Like training my brain to do the wrong thing? Feedback would be very appreciated.


Bobby - yes the vrt should help with all aspects of visual vertigo including the surreal feeling but if possible you should see a vrt physio so you are given the right exercises for your specific problems. Usually you are initially given about five exercises to do for about 1 or 2 mins twice a day, the idea is they should provoke your symptoms slightly but not overdo it. I don't think they can harm you if you do them wrong but you don't want to waste time doing ineffective ones. Good luck, after six months of living in a surreal world, I now feel that on good days I am clicking back into reality and I am putting this down to vrt.

Sarina - awful news about your job, I know it's easy to say things happen for a reason but it may give you a bit of space to focus on getting well. Once you have been through this, you will be able to cope with whatever life throws at you

Anna - it's true that diet and exercise are all a part of recovery and not overdoing anything. Sorry you have the added worry about your brain scan, I know lesions on scans can be linked to numerous causes included viruses and migraine so try not to worry about MS risks. Its very difficult not to look everything up on the Internet but you can really scare yourself. I certainly have!

Have a good weekend everyone! X


Anna B.

I know I've mentioned this to you before, but PLEASE PLEASE PLEASE consider Lyme disease and related co-infections as the root of your issues.

Lyme can cause:

The lesions on your MRI that you describe

The ear issues you are having (tinnitus, fullness, dizziness, Labyrinthis (which can be caused by Lyme BTW per John Hopkins)

The sudden joint pain (a hallmark of lyme)

The ataxia you describe

The neck problems you describe

The headaches / migraines you describe

The head pressure you describe

The nausea you describe

I had all of these same symptoms PLUS the lesions. I was told I did NOT have lyme as my first test was negative. I was getting the same run aroudn you are getting.

Pleaes please please find an LLMD (Lyme Literate MD) and get a proper test / diagnosis and help yourself. YOu have so many symptoms and your story is almost exactly like mine.

Some resources for you: -Burrascano's treatment guidelines: (The Bible of Lyme Treatment) http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

-Watch "Under Our Skin" www.underourskin.com Free on Hulu and Netflix. Also on Youtube for pay. Oscar-nominated film describing the lyme controversy and why so many people (9 out of 10) go misdiagnosed.

Find an LLMD by going to http://flash.lymenet.org or Lyme Disease Association. http://www.lymediseaseassociation.org

Tell your story on Lymenet: http://flash.lymenet.org

Just be aware that regular doctors don't know squat about lyme. They will tell you it isn't possible, that it is all in your head, that it isn't lyme, etc. They are wrong and odn't know anything about the disease and the lyme epidemic.

Every lyme patient I have met has a similar story..ill for months, misdiagnosis after misdiagnosis, before finally getting to an LLMD and getting well.

I've been in treatment for almost 2 years and all of my symptoms are gone today aside from mild tinnitus and muscle twitching.

Please please consider this. Lyme is in all 50 states and you don't need to recall getting a tick bite (I didn't).


Thanks all for your comments! B, it's not that the the doctors are not worried, it's that they really don't know anything until it gets worse or until I start having definite symptoms. So I stopped eating gluten because I didn't want to just wait six months and have another MRI to find that my lesions have increased, and I thought that if by chance it WAS gluten that was causing them, I'd be ahead of the game. I read these amazing stories online of people who were in wheelchairs with advanced MS who stopped eating gluten and were jogging within a year.

And yes, lesions can be because of migraine too, but I never had migraine before so that's unlikely, or they can be caused by the herpes virus or the chicken pox virus. But all of this could be related to gluten too, as for people who don't digest it well gluten can attach to your organs where your body can see it as a foreign invader and try to kill it. It has a similar protein structure to our own cells, so your body kills your own cells too in trying to destroy the gluten, and this is the cause of many autoimmune problems, and also of some migraine and arthritis. And it could be a way for viruses to cross the blood-brain barrier. Of course they will NOT tell you this at the neurologist's office. I never knew I had a problem with gluten until I stopped eating it, and now when I am exposed to just a little, or to MSG, I get really ill with headaches, stomachaches, and nausea. What's really lucky is that I don't miss it at all, as I do indulge in gluten-free baking, and still make cakes and cookies and pancakes and things (which I also have time to do, as I can't work full-time yet). So I'm not really a food martyr or anything! It just makes it a bit harder to eat out.

Brad, thanks again for your concern, but I've researched it, and there are very few reported cases of Lyme infection in Los Angeles county, and nearly all of them were contracted by people visiting the Northeast. I have been in the Northeast in the past few years but only in the most urban areas, so statistically speaking, it's so unlikely for me to have Lyme that I'm going to have to conclude that I don't have it. Plus, I am steadily getting better, which I don't think I would be if it were Lyme. But thanks for the heads up. Take care all, I hope everyone is feeling better and on the mend!


From LIVESTRONG:

Gluten is a protein is commonly associated with a wheat allergy, but may also be found in rye and barley. If you have an allergy to this protein, your immune system makes the mistake of identifying it as a danger to the body. When this occurs, the immune system attacks the gluten with antibodies that attempt to rid it from the body. Antibodies communicate with white blood cells, which trigger the production of histamine in soft tissues. Histamine causes increased blood flow to tissues, making your lungs constrict and increasing mucus production in the body.

When your immune system overreacts to gluten, triggering the production of histamine, soft tissues in your lungs, skin, digestive system and sinuses can become swollen. The swelling of the sinus cavity and other soft tissues in the head can block your ability to breathe through your nose and increase the amount of mucus in your nasal passages. If the inflammation continues for a few days, bacteria may develop in your sinuses or your inner ear, causing a secondary infection.


Hey guys, I was doing so good and than came down with a head cold. The dizziness didn't get worse at all but it seems that my hearing in my right ear is pretty muffled. I've been very stuffed up, and I blew my nose and my right ear went full and wouldn't pop, slowly it went back to normal after tons of yawning but my hearing is still a little less in that ear. I'm scared, it's not popping like my left ear and it feels a little full. Does anyone one know if I went a little deaf in that ear all of the sudden? I believe it's the same ear that has the labs but I'm not completely sure. Or is it just simply congestion and fluid build up? It's been two days of the weird muffled ear and bad hearing and I'm still getting over the head cold. I'm so hoping its not permanent. I've never experienced hearing loss with labrynthitis and I've had it for six months, So if anyone knows please let me know..

Sarina


Serina, Try some decongestants and use a humidifier. It is likely it is just congestion. Being sick sucks. Sorry.

Anna, I hope it turns out to be nothing. It must be stressful to know that exists and not know, for sure, what it is. I had a nasty fall and have been grumpy. I have little to say.

Be well and good health, B


Anna

Not sure where you are getting your facts but they are 100% inaccurate.

Check out these CDC statistics of cases by county in CA. http://www.lymedisease.org/california/pdf/LAB%20REPORTED%20CASES%20CA%202007d.pdf

...and then multiply your county by 14 which is the factor that the CDC estimates go un-reported or misdiagnosed. So if 10 are reported, 140 are likely.

CHeck out www.lymedisease.org which is formerly CALDA (the California Lyme Disease Association..one of the largest advocacy groups in the country.

http://www.lymedisease.org/california/california_map.html

I don't get why you won't at least check it out with an LLMD given your history.

Are you aware that MS is often misdiagnosed lyme. In "Under Our Skin" many of the LLMDs report that all of their MS patients have also tested positive for lyme. There are theories it is one of the potential contributors to MS. It also fits with the gluten intolerace as most LLMD's encourage a gluten free diet as you suggest.

If it walks like a duck....

You have mentioned dozens of symptoms, you live in an endemic area, and your docs are stumped. All very common story for others.

Why not call the Lyme Disease Association or post on Lymenet to hear what others think. You may finally get some answers.

You wouldn't believe the number of people who went for years being told it was MS, Parkinsons, Meneires, Labyrinthtis, etc, when it was really lyme all along.

Anna, just because you have never had migraines before does not mean that you don't have them now. Getting labyrinthitis or VN is a major stress on the nervous system. In a few cases this causes the brain to become irritated and lead to over-firing of neurons i.e. migrainous activity. As a result, many folks can continue to experience the brain fog, dizziness, disequilibrium, nausea, blurred vision and hence not be able to compensate from vestibular damage, because the system is in constant flux. Some never even develop a headache, but it is still considered a form of migraine.

Other antecedents for migraines can be hormonal changes: puberty, pregnancy, perimenopause, and menopause, as well as fibromyalgia, Meniere's, any sort of head injury, and a host of other conditions.


Brad,

Thank you for that information. I hadn't seen that before. Here is where I read about the low incidence of lyme in Los Angeles:

http://venturacountytrails.org/News/0008-Ticks/NewsPage.htm

And I've done other searches which yielded similar results. I understand that there may be a lot of underreporting, but the results you sent were also deceptive. The lab only states the number of reported cases, but they don't state how they determine what a positive case is. In a test that sensitive, there are going to be false positives too. It's the same with some of the extra-sensitive HIV tests, which don't test for the virus itself but only for antibodies. They have stopped doing HIV tests in the UK because they give too many false positives, and because antibody tests are notoriously unreliable. And I've read on doctors' websites that they will diagnose lyme even if the tests are negative based on a checklist of symptoms. I don't find this approach very scientific.

So the reason I won't test for it is that diagnosis of late-stage lyme is based mostly on one's symptoms. So I know that it won't just be going to see a doctor and getting a test. It will be going to see a doctor, having him insist I have lyme whether I have it or not, and having him put me on a series of treatments that I can't afford and don't want, nobly and with my best interests in mind, and only wanting to listen to me and cure me where others couldn't. But the fact is that many other diseases have the same symptoms as lyme. I would not want to risk long term antibiotic treatment, which doesn't work for many and makes others very sick, based on an opinion or a guess. I've read a lot of stories of people who get rid of lyme naturally when they can't tolerate the antibiotics, and that's the approach I would take first if I thought I had lyme.

In fact, I'm already doing most of the natural protocols of people who have lyme or MS or other mysterious diseases and who just want to get healthy. That's what I'll stick with as long as I keep improving. My progress seems to be similar to that of other people on the board who just have labs or VN. If I get suddenly worse, especially with neurological symptoms, I'll consider seeing a lyme specialist. But for now I think I'm doing okay. I really do appreciate your concern, and I will keep it in mind.

And Tina, yes, you're right, I'm pretty sure I do have migraines now. I only meant that I don't think the migraines caused the lesions, as I never had migraines before (unless the lesions are very new). But yes, I could have gotten them at the same time. I just don't know how doctors could rule out the possibility that the lesions and the ear episode are absolutely unrelated.

B, sorry about your fall! That would make me extremely grumpy too. Setbacks with this thing are so depressing, especially when you are starting to feel up and then you come crashing down. Last week I had a good cry over exactly that. I hope you feel better soon. Please take care, all.

xo Anna


B - hope u recover from your fall quickly, you must be fed up. I fell a couple of weeks ago and it's a real set back, just adds to the overall feeling of not coping. I have never had so many up and down days as a result of this condition. Having a good cry helps but also realizing how much tiredness plays a part in this and trying not to dwell too much on it when exhausted is important. I have been taken off the amiltriptyline and put on antibiotics for suspected sinusitis to see if that works first, another day another theory! Wishing you all better health x


Alice, they first treated me for sinusitis, but it didn't make a diff. I have sinus issues all the time and this was not related. Did you get a few of the ami's down? How did they feel? I am so close to taking them. So damn tired! I am better, thanks! I have fallen more in the last 15 months then EVER in my life. My PT reassured me that it was the ice and not me. It probably was, but oh how concrete and ice hurt!!! My daughter picked me up, as she often does, and said....See? we should have driven to the store. I love to walk and she hates it. She has been sticking a bit closer to me again with the last fall. It was a rough week, but am much better now. I had really bruised my arm. Now IF only these wickedly tight muscles would just ease up some!!!!

Anna, thanks for your thoughts! I hope you are better too. I hate migraines and don't miss that pain, blindness, numbness, nausea, or any other part of them. Maybe I have them still with just dizziness, as the neruo thinks, but this is better then they were...for sure. I am sorry you are suffering. Do you have to lovely aura that sometimes goes with them? That was the worst for me though the headache was no treat. What a mess. I got tested for Lyme. I wanted to know. I almost hoped it was Lyme just so I had an answer. If what you are doing is working then power on!!! Tina has good info as well as Brad.

Serina, hows the cold? Any better? Hope your ear came unplugged.

Heads up, right!!! Onward and upward. Oh whatever! Stay strong!

B =)


Anna, I am exactly as Tina describes above. Started vith Labs/VN which then changed into MAV because of the hyper brain activity caused by it trying to sort the mess out. I don't always get the full blown headache but I get the host of other migraine symptoms that can mimic labs/VN. Been on the migraine tabs for 3 months now and thay are working. Just need to (hopefully) knock this migraine cycle out to hit 100%.

Stay safe,

BINX1965


Hey everyone ,

B, Im sorry about your fall. How are you now? It was very icy here where I live, for a long time. It's tough being unbalanced and walking across it, but now the weather is really good and everything is melting, which is very uncommon for this time of the year here but I'm not complaining! My cold is gone and my ear is unplugged, thanks for asking :) . I was so worried! I was doing so good all week and today I've been terrible. Heavy head, swirly head, head ache. My least favorite symptoms. I can deal with the balance issues but the head issues are a whole new level of crap. So I've been downing water all afternoon, because I feel that it helps with the pressure in my head. I'm hoping that it passes quickly! I believe it must be hormone related because it's that time of the month, yay, not... I've been coping really well though, which is good. I don't worry much or obsess over my symptoms anymore. Although I feel like complete garbage some days I put on a brave face and just deal with it.

Alice & Anna, how are you ladies doing?!


Binx,

Wow. That makes sense. Do you mind if I ask, what are your migraine symptoms exactly, and which symptoms have eased with the medication? Which medication are you on? How often do you have to take it? Are there any side effects? Do you get rebound headaches? What type of doctor diagnosed you? Do you have neck problems too?

I remember from awhile back that you listed symptoms that were almost identical to mine, and that we've had this for roughly the same amount of time too. So maybe what works for you will work for me. Thanks!!

-Anna


B - yes I managed 10mg of amitriptyline before I was taken off it. I took it in 5mg doses over two days and no side effects from that. I would take it in a very low dose to start with as it can take 3 weeks to work. I hope you are getting over your fall, wishing you well.

Anna - this is also one of the meds they use for MAV, thats what they've given it to me for. I agree it sounds like MAV could be the cause of your symptoms or at least something to consider.

Sarina - glad to hear you are coping better with this mentally.

I have permanent pressure in nose, eyes and forehead which changes into pain, its 24/7 and has been like this for 3 weeks although have headaches like this on and off for five months. One doctor says migraine the other doctor says sinusitis. I am taking antibiotics for sinusitis as I have always had sinus problems but no relief so far. The good news is that in the last week I have had less 'wooziness', I feel less drunk. Don't want to get too excited but at least that part of it is feeling better and I think its the VRT (but also wondering if the VRT can cause overstraining of eye muscles...) Anyone had headaches from VRT?


Alice,

I just read about and ordered some grapefruit seed extract pills, which are supposed to help with sinus issues (which I also have). Some people swear by them. I'll let you know how it goes.

Also, it's curious but I was rereading that book 'Heal Your Headache," and the author says that neck pain is part of migraine - not that the neck pain causes the migraine, but that the pain of migraine often radiates to the neck and shoulders and is thus part of the headache. He doesn't think there is essentially any difference between a vestibular migraine and other migraines. He insists that they are all part of the same migraine mechanism.


Thanks Anna, I was actually taking grapefruit seed extract last year when I first got VN as I heard it was good for that but stopped after a couple of months, maybe I should try again.

I should also buy the book given I am having permanent headaches now. Interesting about migraine link with the neck, I also have neck pain.

I read online that chronic sinusitis can be linked to labyrinthitis as the infection can spread to the inner ear! I only found this info on one site so not sure how well known or sound a theory it is but kind of makes sense. Unfortunately the antibiotics have not worked. Just hoping its nothing more serious. This illness triggers so much health anxiety, i cannot wait to feel normal again and not worry all the time.


Hello, My PT showed me how tight muscles in the neck push on nerves that effect the face including the tongue, nose, and above the eyes. All classic sinus pressure places. It was SUPER interesting. She showed me where to apply light pressure to relieve the pain. The spot I touched in my upper neck made me feel it in the bridge of my nose. I wish I could show you what she showed me. I have crappie sinuses too so I can relate to the discomfort. I do a sinus rinse everyday and it is awesome. I have probably told you this before. I make my own salt solution to save money and if I am really having issues I used it two or three times in a day. Give it a try.

Have a great day!

B


Thanks B, is the spot u press on neck half way between ear and base of skull? I read this as an acupressure point so pressing daily.

I was strangely excited to think all my headaches were to do with sinuses but I am now resigning myself to it being all inner ear/migraine related as the pain in eyes went berserk in the supermarket (the day I get round the supermarket without any issues, I'll have a huge party!) I think I will have to take the amitriptyline but waiting to see what specialist thinks, I am having this pain/pressure daily now and feeling bit woozy again. I have taken up swimming which really helps with energy and even though I feel a bit drunk when I get out the pool for a few minutes, I think overall it's helping me cope better. I cannot wait for this to be gone! Ax


Alice, when I was having just dizzy spells in the beginning I was swimming too. My ears were a mess every time I got out of the pool. It was when I knew something was wrong with my ears. I got horrible earaches after I swam too. I thought it was all very unpleasant and weird. It was about 5 months before I got fully blasted with the labs crap. Have you tried the sinus rinses? You should try before you give up on your sinus headache theory, as sinus headaches are almost as bad as a migraine, for me at least. The rinses help...A LOT! I don't get them near as often. The spot is just down from the base of the skull beneath the vertebra that sticks out slightly. It is a very gentle barely noticeable pressure you apply in an upward motion with two fingers on each side of the spine. In the beginning of the full time dizziness I had terrible trouble at the supermarket or anywhere with florescent lighting. It lasted a very long time and still sometimes it bothers me, but I make myself stay and I work really hard to calm down and steady myself. I get a tippy dizzy felling while out and about and a lot when I am standing looking at someone in a conversation. I make myself keep doing it. It is so hard sometimes. I used to always cave and run home or go for a drive. It is such a damn process and I ope it goes away someday. For all of us!!!! Oh and my eyes get really sensitive when I am having a sinus headache too.

Mike, how is the therapy going? Are you a new man yet? I sure hope so!!!

~I'm still thinking the good thoughts for everyone~

B=)


Alice, that's how my labs stated - a month of a flu incredible sinus congestion when I'd never had sinus issues before, then wham with the labs.

B, thanks for the info on sinus rinses. I'm chicken about doing it, but maybe one day I'll get up the courage to try. My boyfriend swears by them.

About the dizziness and migraines we all get: I really think it's just the brain having too many signals coming in. It's no small thing for the brain to have to adjust to every movement with new signals from a damaged ear, and then the added stress of having to be in a supermarket or to focus on talking to a person sends it over the edge. In that "Heal Your Headache" book he says that everyone has migraine, that every headache is some form of migraine (including sinus headaches), and that everyone will get a migraine if their threshold is exceeded - some people just have a lower threshold than others. They've done studies where people can ingest large amounts of MSG with no problems, but after fasting for a period of time every one of the subjects tested had neurons destroyed and got a headache, because apparently hypoglycemia weakens the body quite a bit so bad stuff can get to the brain. Having imbalanced ears automatically gives us a very low threshold. This is why I'm so careful about lowering my food migraine triggers.

So what he recommends is first cutting out all triggers (MSG, aspartame and coffee are usually the worst, and also stress and sleep related triggers), and then if that doesn't work to add a preventive migraine medication. The problem with us is that we can cut out all dietary triggers but we will still have a very low threshold for migraine because of the ear damage. The amitriptyline is one of the medications he recommends for raising one's threshold, but he recommends another of the tricyclics more strongly - only now I've misplace the book so I'll have to tell you later when I find it!

For me I've found that cutting out the gluten was the one thing that helped to clear my sinuses. Although I still do have sinus issues, they're much better than before where I felt perpetually clogged and could never ever breathe through my nose.

I'm thinking that if things don't improve soon it might be a good idea to go on one of those medications, but I would really rather not. It would be worth it though if it helped to get me back to full speed, or at least close to it.


Okay, I found it. The migraine medications he recommends are pizotifen and nortriptyline.


it's amazing to discover how common this problem is and here i was thinking nobody understood...i do wish all of you could fully recover ,including myself. at least it's comforting to find people who can understand.


Hello everyone its been a while since I posted, I have been still working with my Chiro/Physical Neurologist with great results. I do tons of research on this since I have had it for over 3 years and work from home and refuse to "just live with it" or "i dont know" or the "Labs" or any other title they throw at this. But I came up with something that is working amazingly for me, and I'm pissed I didn't find this sooner. VITAMIN B12 Yes in massive doses. Every Dr. I have been to has stressed this vitamin. I thought I was taking enough and in the proper form, turns out I was wrong. I now take 5000mcg of sublingual Vit. B 12 every morning and a B complex early afternoon. As I have learned the older you get usually starting in your late 30's the body loses the ability to properly gain Vit. B12 through your diet and a problem maintaining proper levels in the body. Vit. B12 does everything in the body it is considered one of the most important vitamins for countless purposes. It makes red blood cells to help carry oxygen, boosts energy, helps with food digestion, better sleep since it helps with melatonin production and probably the most important one is nerve regeneration with rebuilding the myelin sheath(the covering around all nerves). I have been taking this for about 9 days now and everyday gets a little better. They say the results start in the second week and build from there, and they are right. Vit B12 is water soluable so you can not overdose on it, the body will simply get rid of excess and store what it needs in the liver. Look up the symptoms of Vit B 12 defeciency and how common it is. You can get sublingual Vit B12 in any store, i got 60 pills for $16 at Wegmans. Seriously look it up. Mike


Mike, thanks so much for this information. I've been reading about B vitamins too, especially B6 and B12, and trying to supplement through diet (eating liver, etc.) But this sounds much more efficient. I just bought a bottle of sublingual B12, and I'm hoping it works as well for me as it has for you. Yay! I"m hopeful about this. Take care everyone, and Happy Valentine's Day!


B, I have heard sinus rinses are very good, I tried with a neti pot once and felt very clear afterwards but now thinking of buying one of these sinus irrigators. You sound like you have had very similar issues to me, certainly focusing on peoples faces whilst talking has at times been awful, I was once speaking to a mum at my daughters school who was standing infront of a building with lots of vertical lines and I felt like I couldn't focus on the conversation as felt so out of it, all I could see were these lines and her head moving like a nightmare.

Well i am seeing my specialist who still thinks it's migraine but i am wondering if I have both issues. I have certainly had years of sinus problems but no headaches until now. I think I am going to start the meds and have done with it, the pain is a misery, no let up now every day. The pain behind the eyes can be awful. At least the dizziness, surreal vision is no longer 24/7, now that is a relief.

Amongst my collection of unopened vitamins I have B complex and B 12 so maybe should give those a go. Anna, I admire your approach with your diet, I spend three days of no gluten, caffeine or dairy and then end up back in starbucks! I have to be more disciplined! Take care everyone x


Hi folks:

Just an FYI..I just met another person over on Lymenet who was originally diagnosed (misdiagnosed) with Labs.

Thought I would mention it again for those of you who are still searching for answers.

http://flash.lymenet.org (medical questions)

Check out the patients describing their years of misdiagnosis here:

http://www.ilads.org/

Or in this video which will air during the Indy 500 on the Jumbotron: https://s3.amazonaws.com/torontovideos/ilads-misdiagnosed-v3.swf


Diagnosed with labyrinthitis this morning after a weird attack of intense vertigo on Sunday morning followed by non-stop mild or not so mild dizziness since. Felt very nauseous at first, and still do if I try to continue to do something when feeling dizzy. Some headache too but not all the time. Was recovering from cold/flu virus and congested. Sounds pretty classic from what I've just been reading (these pages and wiki), but I'd never heard of it before. Hope mine gets better soon. Hope all of us get better soon! Full of sympathy for those who have suffered from it for years. It's horrible, and very scary initially. Prescribed Prochlorperazine so far!


Hello to everyone, I havn't posted on here for a while. It will be almost 6 years since the dizziness started. Although I'm coping well now on the whole, it's just so scarry when I get a slight wobble and it sends me into a big panic! Hello to you Sandy, so sorry to hear you are still suffering. Keep well everyone Sue xx


Being sick would be less hard if we would just win the lottery. For us all, I suppose. A husband would be helpful too. It is hard to do it all all by myself. Ok, whining is over. Thanks.

Hope some are recovering as I type.

B


B, winning the lottery, wouldn't that be nice! Sorry you have to go through this alone. You're very brave and you're not whining. No one understands how hard this illness is, and it makes it very lonely even when one is surrounded by people who seem to care.

Welcome back, Sue. Wow, 6 years is a long time! But I'm glad you're feeling somewhat better.

So I in doing more of my avid research on how to get well, I started looking up stuff about sinus and ear problems in particular, and kept coming up with articles about candida overgrowth. What was especially interesting was to read about how one of the places candida settles in and creates havoc in the ears. So I thought, why don't I try a supplement and see what happens, can't hurt.

Long story short, I ordered a bottle of something called "Candida Clear" which contains caprylic acid, and also some grapefruit seed extract, and I've noticed dramatic changes since I've been taking these two supplements (only about a week). I am less congested, and I have more energy. And last night I woke up in the middle of the night and felt all of this activity in my bad ear, and realized that it was draining! Today I still have clear sinuses. It may all be a coincidence - it's too early to tell - but I think my head clearing has something to do with these new supplements. I'll update soon. Feel better everyone!


I just saw that someone else on this board posted similar things about candida a couple of pages back! And I thought I'd add this information that I got from a website about the effects of candida overgrowth:

General symptoms may be fatigue, drowsiness, muscle aches, weakness, or tension, joint pain or swelling, dizziness, loss of balance, incoordination, fluid retention & tissue swelling, numbness, burning or tingling. Cognitive/emotional symptoms may be a sense of spaciness or mental fog, difficulty concentrating, poor memory, depression, anxiety, frequent mood changes, & irritability. Head symptoms may be headache, nasal congestion or postnasal drip, nasal itching, chronic sinusitis, visual changes, burning, tearing, or itching eyes, fluid in ears, ear pain & congestion, recurrent ear infections, draining, itching ears, sore or dry throat or mouth, & scalp lesions.


For those of you looking at candida - please beware of the many myths around this type of infection. With candida problems the primary symptoms are gastro-intestinal:

Unpleasant bloating and wind, especially after eating carbs Diarrhoea or constipation which might alternate Nausea and/or acid regurgitation Unexplained tiredness or lethargy Sweet craving IBS � Irritable Bowel Syndrome Depressive moods like �winter blues� Recurrent colds and/or a low immune system Eczema Recurrent vaginal thrush Recurrent cystitis and alike

It would take a major systemic candida infection to produce symptoms over and above the ones described above. If you got to this point you would certainly know about it as you would probably be loosing weight so rapidly you would be beating your doctors door down for treatment and a diagnosis. There are pictures (just type candida into google images) of people with a candida yeast infection literally taking over their mouth and other areas - obviously full of the stuff - but probably not wobbling around like drunks.

Lots of people out there selling candida products and telling you about the issues it might cause. This stuff is in all of us - if you test you will find it. Chances are if you dont have any gastro symptoms it's not causing a problem. If you do have gastro symptoms then go see your doctor.

Lots of the supposed candida cures contain other items / suppliments that can give folks a boost. Vitamin B or B12 is one of these but there are many other contents. Chances are if you are feeling some benefit it may not because it's killing candida - but just the fact that you are adding something that's giving you a boost.

Best natural remedy for candida if you think you have problems with it (check the gastro symptoms) is by cutting sugar and carbs from your diet and consuming garlic preferably raw - if not odourless capsules.

I am not trying to knock what you are doing. All I am saying is beware of the candida myth traps.

Hope everyone is doing ok and best wishes to you all..................

Stay safe,

BINX1965


Had a wicked "episode" today. It got me really out of whack just like in the beginning. I have not had one of those since last summer. It was very unsettling. I came home took some anxiety meds and laid down and took a nap. Am better now, but am wiped out. It really made me feel like this really will never end. Oh well, am better now. I hope these just are less and less as time goes on!!!

B


Hey guys, I've been a little bit better. Milder dizziness, a few moments were it feels like the floor drops from underneath me here and there, but overal not the worst I've experienced. I've almost lost hope that my life will ever be normal again, I feel like I'm going to have this for life. I went out for dinner and even managed to have a few drinks and was fine, so I guess that's nice. Still looking for a new job, because my current one has cut my hours to basically nothing, and well, I need money. No matter how dizzy I feel I always need to be doing something, I would rather be dizzy and doing something productive than sitting at home and dwelling over it. I'm getting my wisdom teeth removed in two days, does anyone know if badly impacted wisdom teeth can cause inner ear symptoms? It would be so cool if my dizziness completed subsided once the wisdom teeth are gone.

Sarina


Binx,

Thanks for the information. I don't think I have a systemic candida problem, but candida MIGHT be an issue for me. All of a sudden right before the labs hit I started to have constant colds and flus, sinus problems, food allergies, pollen allergies, sugar cravings, weight gain, stomach and bowel upsets, etc. After two years of extensive traveling, in which I ate a lot of carbs and desserts and was under tremendous stress, I settled back at home and have never felt the same since. I got really sick from eating pasta when I went to Italy, which is how I first got the idea and carbs and gluten might be a problem, and later I had all of this mucous with a sinus infection that wouldn't drain, which is what I suspect led to the labs (that, plus drinking cheap red wine) . So my ear problems are slowly clearing, but I still have all of these other problems, and still the feeling of the ear being painful, blocked, filled with fluid, fluttering, etc. I mention the candida supplement here because there are others here who also seem to have sinus issues. Of course it could be a placebo effect, it's true. But it doesn't have side effects, it only cost me $13, and it's really only herbs anyway. So if I finish out the bottle and I don't feel continued improvement, I'll stop. I really do feel better if I cut WAY down on carbs, so I've been trying to do that, and eating raw garlic every day.

Behind everything though there's still always the migrainous bad head feeling, but I'm trying to get rid of some of these other annoying symptoms so at least there won't be SO many. Also, I still have a rotten immune system, and seem to almost always have a cold. So I don't think that taking anti-virals and anti-fungals is a bad idea.

How are your meds working, Binx? Any news on that?

B, hang in there! That sounds really scary, to have an episode like that. I had one last week, where the room started spinning all of a sudden, but it only lasted a few minutes. Do you think your episode was migraine related? Is it you whose doctor insists that you no longer have migraines? It definitely sounds like a migraine.


Anna, my neruo thinks I DO have migraines still, but I don't think I get them anymore. I guess they can change over the years, but how weird they would be one way for 15+ years, then disappear only to come back in a completely different way 8 years later? I just don't know. Things looked weird and sounded weird and I felt like I was being pushed against as I walked. Then my head felt wildly heavy like I was going to fall. It subsided after I took the anxiety meds which, we all know, calms the inner ear. Those NEVER calmed a migraine. I just am not sold on the migraine theory for me. But really, who knows. It just frightened me as it always does. I am good today. I DO have a history of wicked migraine so that is just a fact. How it figures in, I doubt I'll ever know. Am super sick of it. I have been touchy since xmas, but am getting to more of a level ground with exception to last night. I am over stressed and that has everything to do with it!

Deep breaths. B


Hi everyone, B sorry to hear about your recent attack, that sounds awful. How are you now? Are you going to give amitriptyline a go? I have now had a sinus scan and apart from mild inflammation of sinus in cheeks and an impacted wisdom tooth, there is nothing to link to pain and dizziness (although sarina if sorting out your teeth helps please let me know!) I keep being told it's all migraine related and to take the meds so that is what I am doing. I have finally started the pills and don't mind being a guinea pig for all those wondering whether to try them. I should see a difference in a couple of weeks. I was told migraine can occur without any headaches and can also change in symptoms over time. I will let you all know whether I get relief from the meds. I am looking forward to getting my focus back again, at the moment I feel permanently hung over, tired and in pain. Just fed up of it like everyone here. Take care x


Hello all,

Some of you will probably already know my diagnosis. I'm a year down the road now. What initally started as Labs/VN is now MAV. Not an uncommon scenario so i'm told. Current treatment involves trying to break the migraine cycle with drugs. Current status:

Went on migraine med Pizotifen for 3 months and had some good improvement. Weather changes didn't affect me anymore - but I wasn't consistently good or at 100%.

2 weeks ago Consultant asked me to try Topamax another med they dish out for migraine. After a week I could barely get out of bed or lift my arms and legs. Stopped the stuff and went back on Pizotifen.

Next hospital appointment is on 6th March and unless they come up with any miracle treatment or ideas then I will be asking for Nortriptyline which is one of the anti D's they prescribe for migraine. The Pizotifen has shot my sleep pattern (full on insomnia) so ideally I need to get off it but can't go cold turkey. The way I am starting to feel after a year with this junk an anti D is def the way to go. Hopefully knock the migraine and my frazzled nerves on the head in one foul swoop. Two birds with one stone so to speak.

For anyone new viewing these posts and maybe for some of the oldies. 3 essential books to read which might help you move forward with your recovery;

1. Finding Balance - Healing from a Decade of Vestibular Disorders by Sue Hickey. All you will ever need to know about a whole host of vestibular disorders - written by a sufferer. Trust me - It's all in there.

2. Heal Your Headache by David Bucholtz (essential if you suspect MAV or migraine involvement). If you aint recovered after 6 months of what they keep calling labs or vestibular neuritis then buy this book. This could be the best advice you have ever had.

3. The Linden Method by Charles Linden. If you are dealing with bad anxiety as part of your balance probs look no further than the Linden Method. Its the only anxiety solution that really works.

All available via Amazon (or via other places on the net - just google the titles)

These 3 books may be the best money you ever spend in your fight to get well again.

Stay safe everyone,

BINX1965


Binx, thanks for that info, very useful, I hope you get even better relief with nortriptyline. Just a quick question, did you ever suffer from migraines before the VN started? I have same diagnosis as you but I never suffered from migraines before and now I have a constant pain behind eyes, nose and forehead (not throbbing kind but dull ache that usually gets worse at night and strangely when driving). I often worry that I have the right diagnosis but this illness is so strange, it can certainly cause a lot of anxiety! I have ordered the headache book and going to have a look at the others


Alice, I have pain like that. I associate it with a tension headaches. Heat is a helpful aid. Sometimes there is no fixing it for days and when it hurts it hurts. I don't have it constantly tho. I'm sorry you do. I am reluctant to say migraine as I am so fearful of them. I never missed them for one minute. That first one when I was 11 was just such a horrible nightmare. When I got to stop carrying my Imitrex pin around I was so excited! They left me so miserable for two days at a time. I hate to think that they are still with me. Maybe they are. Have you taken the ami yet? I have discovered that Flexeril, a muscle relaxant I take, is a dirivitive(sp) of ami! Far removed, but it still is related. It gives me no negative side effect except sleepy. That is why they gave me the ami! I need to take it. I have been forgetting as the Flexeril has been helping me sleep. I am traveling this weekend again to take care of my nieces so maybe I will remember when I return. I hope you are feeling a bit better and everyone else too.

Binx, Topamax has been recommended to me and I have shot it down as it is known for some pretty crappie side effects. Sorry it didn't work for you as it has had a decent history with migraine prevention. At least you know! I have heard that Nortriptyline(sp) is good and can even help with pain. Amitriptyline is in the same family. I wish you could get to 100% with it. I'm rooting for ya!

Good health to all!

B


Alice,

I had migraine headaches as a kid then at age 11 they miraculously stopped and I forgot all about them. I still got headaches and usually knocked them out with a couple of paracetamol. Fast forward 35 years and I get hit with labs/VN call it what you will. Seems this junk awoke the sleeping migraine with a vestibular twist. Until I tool Pizotifen I had the pain behind the eyes and a funny sensation across the bridge of my nose. This was always supported by a low lying headache of some sort. I also get the feeling that my blood sugar level has crashed and the anxiety ramps up with it. I know it's not blood sugar as I bought a kit and tested myself over a month (even when feeling bad) and it never dropped below the norm. Matbe that feeling is my migraine aura - which can take many forms.

The 'heal your headache' book will explain all the junk you are dealing with and hopefully how you can improve or rid yourself of the symptoms.

Yes anxiety does play a big part in this junk.

Stay safe,

BINX1965


Hey everyone,

I had this horrible illness for nearly a year and recovered through VRT. I have set up a website about my experience as I found there was virtually no information online. I also made a list of VRT clinics in Ireland as again I could find no information online when I was suffering.

Hang in there everyone - there is a cure!! Love M xxxxxx

www.curelabyrinthitis.com


Thanks Binx, I keep thinking I have a blood sugar problem aswell, my symptoms are definitely worse before meals, I was in a restaurant at weekend and before the food arrived I felt like I was going to collapse, after eating although the headache was still there I felt relatively human. However in the past my sugar levels have been normal in blood tests.

Just waiting for the meds to kick in now, they certainly make me tired. The specialist I saw said my MAV may have been brought on by the labs plus sleep deprivation from my kids (don't think I have slept properly for four years), I am sure sleep has a big impact on all of this.

To all those on anti migraine meds, are you still doing VRT? I have reduced this a bit but not sure whether to keep going. I think I will for now but just wondered what advice others have got.

Thanks for website link marian, will have a look.


Alice,

The consultant I saw said don't be swinging your head around with VRT as it's migraine that's the prime target. VRT will make it worse. Says you need to be 4 months clear of the migraine junk before even considering any VRT stuff.

Stay safe,

BINX1965


Alice, sleep is the ruiner of all things if you are not getting it. You muscles cannot heal without sleep and your body cannot get well as fast. You should take the ami at night 2 hours before bed. It is mostly prescribed for sleep now days and that is how I was told to take it. I hope it is helping you!!! The blood sugar thing sucks and I get the two feelings so completely meshed together that I almost can't tell which is which! I am stuck in Seattle right now as the weather is too bad to head home. I am tired and excited to get home. I've been taking care of my nieces for 4 days and getting up 3+ times a night to take care of the 8mo and her meds and reg baby stuff. I am def not used to this! Kids take away the sleep for sure!

Good thoughts to all. B


Binx, are you sure your doctor is correct about this? Is your doctor saying that you do not have uncompensated labs now, but only migraine? How would a doctor know that? They can't see what's going on in your inner ear, so all they have is your symptoms to go on, and thus anything they tell you is a GUESS. My own doctor even admitted this to me.

Uncompensated labs can bring on all the symptoms of migraine. I never had migraine before but now I have it all the time. I think this is due to my threshold for headaches being drastically lowered because of having uneven ears and the brain working so hard to balance me that it gets overloaded. That book "Heal Your Headache" explains about headache thresholds. I stopped doing VRT for several months because I didn't know if it was helping anymore, and because I thought changing my diet was now the key issue. BIG mistake. Changing my diet helped, as this disease also lowers immunity and so processed foods were making me sick, but the real issue I think is still the uncompensated labs. I don't think most doctors believe that labs can go uncompensated for so long, but it seems it definitely can if you have permanent damage that's bad enough. I'm back on the VRT and it makes me much more stable and functional.

So Alice, I would advise to stick with the VRT. It can't hurt, and it's probably helping you a lot. I mean, if your brain is having a hard time making new pathways from an injury, why not help it along? After a year of reading stuff on the internet about what does and doesn't work for people with this condition, the only consistent cure I've found that seems to work for most people is staying active and doing VRT. Little fixes for sinus issues and a bad immune system of course help too, but I think VRT is the long-term answer. Just my two cents.


When I had a migraine I would have NEVER swung my head around as it would have made things a million times worse, unbearable even. I would not recommend it personally. Migraines are also a guessing game in the world of medicine, but they are a bit better understood then dizziness. I did VRT for a very very very short time way back when and then never again. I have made lots progress without. I say hike your heart out when you can, make yourself stay in the grocery store, clean the house, anything that make yous move naturally. It is up to each person how they choose to deal with this. I know for myself that a migraine and VRT are not match. When I had them all I could do is lay in bed, in the dark, throwing up, and trying not to cry. No way would that have helped. Even when presented in a different way a migraine is migraine. Just my thoughts on the matter.

Binx, how is the new med?

Marian, how awesome you have recovered!!! I will have to check out your site! Thank you for your positive story!

Hope everyone is holding up!!


Hello all,

The consultant I saw said that active migraine stops the brain compensating for any labs/VN damage, in the same way that anxiety and depression will also hinder compensation. These factors may also cause the brain to decompensate from a previously compensated vestibular injury. It is important that any of these side issues is addressed in conjunction with any other treatment regime being followed. With anxiety/depression as an underlying issue continuation of VRT should not be a problem, but with migraine/MAV head movements can exacerbate/worsen the underlying condition (migraine) due to the nature of the VRT activity. In this case it is important to get any migraine issues under control before VRT continues / commences.

I agree that VRT is the answer and probably the only way to functionally recover from inner ear damage. It won't heal the junk but your brain will re-wire to compensate for the damage. Side dishes of anxiety, depression or even migraine will hinder this process. It's a case of either dealing with some of this junk in the right order (one at a time in priority) or in concert with other treatment methods.

My balance is pretty good now. The labs/VN junk has just left me with migraine symptoms and more of a lightheaded type vertigo. Headaches, pains behind the eyes, bridge of nose numbness, pain behind my left ear and tinnitus that comes and goes. I am always worse with any symptoms after waking in the morning. These symptoms can disappear completely during the day. Weather changes (drops in pressure) seem to make things worse. I still also get some feelings of anxiety that ramp up alongside any crappy symptoms.

Pizotifen got me to an average of 80% good. Some days I am even 99% good. A bad day will see me down at 50% and just about able to carry out basic tasks.

I am back to see the consultant next Tuesday so will see what that brings. I fancy trying one of the anti depressants that hit migraine and help sleep. Trouble with pizotifen is that it has wrecked my sleep patterns which is not good for migraine folk. One of the tryclic AD's will hopefully help the sleep issues, tackle the migraine and soothe my already 'fried' nerves. Tis now the only way forward as far as i'm concerned.

I'm 14 months down the road with this junk and at the end of my rope............. so to speak.

Will let you know how I get on next Tues.

Stay safe everyone (old and new)

BINX1965


There is apparently controversy about whether or not one should do VRT when one has a migraine condition. Obviously you are not going to want to do anything strenuous right in the midst of a migraine, whether it's hiking or housecleaning or VRT, but I don't know why anyone would caution against them if you can tolerate them. It's just eye and head movements done at a speed at which you are comfortable. Thus I don't see how they can make anything worse, even if they don't always work. No one is saying you have to swing your head wildly around. You must move your eyes and head to recover, whether it's through VRT or some other activity. The surest way to decompensate is to stop moving.

Here is a study in which ALL dizzy patients with migraine improved with VRT:

http://www.tinnitusjournal.com/detalhe_artigo.asp?id=430v


With MAV (unless it's under control) the migraine is constant. I have migraine symptoms 24/7. I guess there may not be a problem with VRT with intermittant (standard) migraine but when it's 24/7 with no let up I agree with the consultant that it's a no-no. I would be on deaths door with VRT at this moment in time.

Plenty of articles and technical data on the MAV forum (google search).

Good luck folks.

BINX1965


As I said each person needs to deal with this in whatever way they are comfortable. No one said even once to swing your head wildly. How silly to say that. I know that any movement, including small eye or head, exacerbates a migraine headache and can for days after. That was just a little fact I was passing on. If one wants to continue on with VRT then more power to you. There is no controversy just suggestion. And no one said anything about stopping movement. I have been dealing with this in the years range now so I have developed my own path. I think each person should do that. You can present as much info as you want, but it all boils down to a persons comfort level and I think that is important. VRT was not for me personally, but it has helped many others recover and that is nothing short of awesome. So good luck with whatever you decide to do. There is no one way.

Be well, B


Hi everyone, well it seems to be a confusing area VRT with MAV. I was told that I should continue doing VRT while i have MAV whilst on meds, unless I had a very bad attack of pain and had to lie down. However most of my exercises involve watching videos of crowds and moving my eyes, nothing too strenuous. Although I havent done any for quite a few days now.

I don't want to jinx it by saying this, but I have been on amitriptyline for around ten days and I am almost completely pain free and my dizziness has really improved! I wish I had taken this stuff earlier. I am on an extremely low dose so I would recommend starting with a tiny amount (5 or 10mg) wait a week and then increase if u need to. It does make you tired but then being knocked out at night when u have this condition is a good thing (unless u have to get up for kids like I did last night and then u feel unable to function in the morning). I am crossing all fingers that I am on my way to climbing out of this dizzy hell I have been in. Good luck everyone x


Hooray, Alice!! I'm so glad for you!!! I better take that dang med!! How old are your kiddos? I so hope you are getting over this. What is your target dose? I need to just man up!! What kind of videos are you watching? Am very courious. I play this game that I have to be quick and shoot colored balls at ones that match. It makes me move my eyes a lot. It is for fun but I honestly think it has helped. Please keep up the good news it is so uplifting.

B

I hope that all are doing well here. I just thought I'd stop in and let you all know that I am doing alright. Just living my life now and trying to forget the smaller bouts of dizziness and tinnitus. Things are getting better, but I have pretty much accepted that I might never be 100% again (mostly just due to the tinnitus). Still, living at 95% is better than not living at all! :)

Binx, those are some great books. I have made some pretty good progress with some MAV meds, even though they weren't prescribed to me for such. The only thing I hate about them are the side effects. Some make me lethargic, and others make my stomach bloat and hurt. I haven't settled on any one medication just yet, and who knows if I will or not, but it's certainly worth a shot.

I wasn't keeping count, but now that I think of it, I've been dealing with this crap for 21 months now. Makes me sad when I realize how long it's been, but I'm leaps and bounds better than I was in the beginning of this mess.

I hope everyone keeps getting better, and I'll keep in touch.


B, I'm sorry if I offended you. I don't think that VRT is for everybody, especially if you really do have MAV (which you seem to have), but I wanted to point out that if you're well enough to hike, you're well enough to do VRT. Of course you may not want to, but I didn't want people who haven't done it to think it was so difficult, and I don't see how it can harm anyone unless they're so sick from migraine that they can't move their head or eyes at all. Of course if you don't have uncompensated labs and the problem is not with your inner ear, VRT won't help either.

But for anyone who has done the VNG test and found that their ears are imbalanced, then they likely have uncompensated labs and they to be active to recover. Binx, it sounds like that's what you have, as you rotated during the marching test, which is a sign of a damaged inner ear. So I don't know if it's great advice from the doctor to stop VRT. I for one think that my feeling of constant migraine is uncompensated labs, and I know that it got better when I was doing VRT every day and worse when I stopped.

Alice, how tired do the meds make you? Are you still tired the next morning? Are there any other side effects?


So I guess what I'm saying is that it's important to know whether you have inner ear damage that is causing you to have migraine symptoms, or whether you have migraine that causes you to feel dizzy, in order to get the right treatment. I think testing the ears for differences between them is the only way to know. Either way it seems the tricyclics help though.


B - the video I was given to watch is here www.youtube.com/watch?v=CNiL5-cbhs

I was told to watch for two mins twice a day sitting half a metre infront of computer (however I was told to begin with just one minute a day and build up). They also said each time to start at a different place in the video so you are not always watching the same thing. I recently found the video sometimes freezes so if it does this just try and find an equivalent crowd scene on YouTube with the same blurry effect. This has definitely improved my dizziness in crowds. I also watch another of a playground, which always triggers dizziness with my kids, and I do 3 types of eye exercises.

My symptoms returned a little yesterday but I had three nights of bad sleep (youngest is almost 2yrs but a night owl!) I was also told by doctor I had to increase my dose as the 5mg I am on is too small. I am increasing to 10mg and seeing how it goes. B I would really recommend you give it a go and just start low and see how you feel. Its been a real relief for me even at such a small dose.

However I do think the VRT did improve my dizziness but u have to really not overdo it. When I was diagnosed with MAV I was given just three minutes a day.

Anna, even on a minuscule amount of amitriptyline I felt tired but it usually went by late morning and was bad the first few days of taking it, your body gets used to it as long as you start very low. They told me that some people are prescribed 150 mg a day for depression so the amounts for migraine are extremely low in comparison, usually it can be managed at around 10mg or 20 mg but of course everyone is different.

Binx, how was your consultation today?


Anna, I'm not offended, I just wanted to share my thought about what migraines were like for me. They are now different, I guess, and manifest in occasional unpleasant headaches and constant dizziness. I have been told that the dizziness is the migraine. So VRT gave me a headache everytime. I must clarify. The headaches I get now are NOTHING compared to what they used to be. I fear them ever coming back. I think you are right that if people can tolerate it then they should do it. As I said, comfort levels! I prefer to hike and look around while I'm at it. It is all good! It is also sometimes unclear where the damage is. Mine showed up on the VNG, but it didn't give clear evidence where it was coming from. Tricky business this is. I do have horrifically tight muscles all over, but worse in my neck. Are you doing any meds for your MAV? Natural ones perhaps?

Alice, I'm working on it. I am so dang tired, but the muscle relaxant seems to help me sleep and as I said before it is derived from ami! That is my stepping stone. When it officially stops working I'm going to do it!!! Thanks for your good advice. Seriously. I love knowing it is not horrible!! Sorry about your kiddos stealing your sleep. Mine is a senior so she goes to bed all by herself! Most of the time! =) I hope this med is your answer.

Chuck, glad to see you are hanging in. It sure feels like we have to just accept this doesn't it? If you find the right meds do share!

I hope for the best for us all!!!

B=)


Hi Everyone

I have just come across this site and was amazed how many pages of entries there are on this subject? Amazed I think because no one I know understands or knows about Labyrintitus which makes you feel extremely lonely.

This is the second time I'm suffering with what I think and the hospital diagnosed me with, labyrintitus? Is it labyrintitus? I really don't know?

I'm 44, possibly pre menopausal? I start getting a foggy head, then waves of dizziness, can't feel the floor underneath my feet, drop things as my hands feel numb? The dizziness and imbalance is worse today, I'm having to really focus on where I'm going whilst getting upset and anxious as I don't know how long it will last? It's so scary and I feel so alone! I only feel not dizzy when I'm lying down but feel so frustrated that I can't do normal stuff? Does anyone think it's LB? My doctor has given me anti sea sickness pills 'prochlorperazine' which so far are not helping? Any thoughts anyone?


Hi Janine, I sympathize with you as the initial stages of labyrinthitis are horrible but everyone on here has experienced the awful dizziness you are feeling now at some stage however it will get better. For most people it lasts a few weeks but some of us are unlucky enough for it to have gone on for quite a while. There is a website with useful info at www.labyrinthitis.org.uk. If it continues for more than 2 to 3 months ask your doctor to refer you to an ent consultant or better still a neurotologist (different from a neurologist). If this is the second time you have it you might want a referral earlier. There is not much you can do in the first couple of weeks other than rest and try and distract yourself somehow but after a couple of weeks it's good to stay as active as you can to help your inner ear recover it's balance. Best of luck.

It is not labyrinthitis, unless you had a slap bang attack that gradually got better over time following an infection.

Considering your age and symptoms, there is a strong possibility that you have a migraine variant, that is migraine associated vertigo causing your symptoms. Migraine is actually the most common cause for dizziness, and you don't need a headache to be diagnosed with the condition. Treatment is the migraine preventative diet and if that doesn't help after two months or so, the recommendation is to go on migraine preventative medication. You also want to get blood tests to make sure there are no thyroid issues which can be at the crux of the matter. You might also want to have your hormone levels looked at to see if the hormonal fluctuation is bringing on migraines. Some women can be helped with bio-identical progesterone, since progesterone is the first hormone to go as a woman hits midlife.


I was diagnosed with Labrynthitis in August 2011. I went to chiro and then physiotherapy and it seemed to help. I returned to work gradually on Nov 1 and then full time on Jan 16th.

About a month ago I got a really bad sore throat and it was hard to breath. Soon after I started getting Labrynthitis symptoms again along with a bad ear ache and ear pressure.

It would be interesting to note that my Labrynthitis symptoms got worse soon after my doctor flushed my left ear. He said there was buildup in there. I also noticed that prior to both occurrences of Labrynthitis, I noticed a burning sensation in my stomach. Has anyone else noticed this?

I'm also wondering if I am going to experience Labrynthitis every time I get a cold or sore throat.

I don't feel that I can go to work when I feel like this. I am on the computer all day at work and I get dizzy just looking at the screen for a few minutes. How bad is it for everyone else when you decide that work is not possible?

I am going to see an ENT on May 17 and I am going back for physiotherapy treatment while I am waiting.


Just switched to Nortriptyline for the MAV. Pizotifen was ok but seemed to plateau out in it's effectiveness. 6 days in to the Nort and nothing nasty side effects wise. Started at 10mg. Had a rough few days (with fatigue) at the beginning but it's settling down now and i'm looking to push up to 20mg very soon. After that it's up to 30mg. Hoping this will do the trick at some point. Problem with these meds is that it's a waiting game. Can take a few weeks to a few months before you see any positive results. Fingers crossed. Best wishes to you all. Stay Safe. BINX1965


Hi Helen,

That sounds awful. I'm so sorry. What did the doctor say the build-up was? Mucus or wax?

I've found that the symptoms definitely come back every time I get any type of cold, which these days is often, as I seem to have very low immunity. For me on my bad days it's extremely bad, and looking at the computer screen is very painful. Ginger tea helps, as do hot epsom salt baths. But when I"m in a bad period I usually can't really work at all.

My problem started too with a sore throat, which led to a terrible sinus infection that lasted two months, and then the sudden onset of labs after drinking red wine. Since then I have never really been free of sinus problems of congestion, and also I have a constant headache. But after all this time I really am getting frustrated with the congestion, ear fullness, and headaches, which are not supposed to be, according to doctors, symptoms of labs.

Just today I read this statistic: that doctors at the Mayo clinic concluded that 96% of sinus infections are fungal. Now, this is not consistent with doctors' refusal to believe in systemic yeast infections unless they are in the blood, where they can clearly be detected. They only acknowledge yeast overgrowth where they can see it - on the nails, vaginally, in oral thrush, or when it's gone into the blood. I can't seem to wrap my head around the contradiction. Is it yeast in the ears or isn't it? If yeast (fungus) can't become systemic in the body except in the blood, then what is it doing in the ears and how is it causing sinus infections? I also found out just yesterday that a sore throat can be a reaction to yeast! So I'm thinking that it's possible that my two-month sore throat and sinus infection was my body's way of trying to get rid of excess yeast.

So I've decided that my next step will be to try to get rid of yeast in my body, which I have a feeling is interfering with my compensation. So I'm going on a 16 week candida cleanse that I found online formulated by someone named Dr. McCombs. I've already restricted my diet, and this calls for even more restriction for a time, but the good news is that the strict part of the diet only for 8 weeks and then you can add back foods to see your reaction. And unlike most candida diets, this one allows fruit, potatoes, and brown rice, so it's not really all that restrictive. And you can have coffee and tea. Sinus problems and extra mucus are reactions to toxins - either externally as in pollutants, chemicals, and molds, or internally as in gut flora imbalances and food allergies. It's taken me over a year of internet research to get to where I actually feel that I've found the solution as least to the sinus part of the problem, and that rather than being half-assed about it I have to actually do something more drastic such as a cleanse. I have a feeling that the cleanse will also help with the headaches. I'm having withdrawal symptoms after just a day on the diet, but also feelings of ear activity which feel like drainage. But it's too soon to tell really. And if I'm wrong about the yeast problem all I will have lost is a little money for some supplements, the ability to eat whatever I want for awhile, and maybe a little weight (which would not be a bad thing).

I hope what I've discovered helps others. You can look up the McCombs plan online. This is the hardest thing I've ever had to do. I know it seems like I'm a health freak because I keep talking about diet, but the truth is that before I got labs I ate anything and everything on the planet and loved to indulge in desserts and drank alcohol, so this is all pretty new to me, and is only because I'm desperate to get well. The difference in this plan is that after you do it it's supposed to be okay to eat normally again, which is the only reason I have the courage to try it. I'll update along the way. I also do VRT, which I think is key for recovery. Good luck, and I hope everyone is doing better.

Alice and Binx, any updates on the medications?


I used to post on here since 2010, id like to report all is well but unfortunately i never recovered from the vertigo inflicted from Labrinthtis, i literally have vertigo 24/7 hours a day "the feeling of rocking on a boat sometimes violently" since i caught Labrinthitis end of 2009, im looking into the "Vestibular Nerve section" because i dont feel like i will ever be normal again and that operation has a 95% chance of success of curing Vertigo, i hate to be bleak but i feel like this illness has destroyed my life or at least ruined the better part of three years of my life which i should be enjoying as im Only 21 years old.


S, So sorry to hear. It is not bleak it is fact. It is so hard to stay positive when you feel like a crazy person everyday. I think if you feel like this will be your answer then you should go for it. You should not have to suffer....none of us should. It has stolen our lives and made things completely different. I'm sorry to hear you have had no recovery at all. What a damn mess. Are you taking any benzo to quell it at all? If not you should ask for some. You deserve a break of sorts and those can honestly give it it to you. There is so much fear of addiction, but they can be so helpful in this area to calm the inner ear. You are at this longer then I, but I understand how miserable it can be. I wish you the best and you should check in and vent as often as you need to because you need backup and support. Let us know how the procedure goes. I'll be thinking of you.

B


Hi S,

A vestibular nerve section sounds drastic. Did your doctor recommend it? Plus, isn't that feeling of rocking on a boat a central (neurological) and not a peripheral (vestibular) problem? It sounds like that "mal de debarquement" syndrome. Do you take meds for it? Anyway, I'm so sorry you are suffering so much. Best of luck to you.


Update: I wrote to the doctor asking about my sinus congestion, ear fullness, headaches, and brain fog, and he said that all of these are symptoms that could be related to imbalances in the digestive system (he did not rule out that the labs could also have caused these symptoms, but in my case the sinus problems preceded the labs and may have even caused it). He suggested that I probably had digestive problems that preceded the sinus problems, and he was right about that. If only the sinus problem and the headaches resolve a little bit on this program, I'll be very happy. I'll update more soon.


Here's an abstract I found on PubMed that links candida overgrowth with labyrinthitis:

The yeast Candida albicans is an important opportunistic pathogen that has been associated with disease of the inner ear. This study describes the histopathology of acute labyrinthitis caused by systemic infection with C. albicans in aging inbred mice. Within four days after infection, yeast and hyphal forms of C.albicans were found in the membranous labyrinth. The utricle and the adjacent parts of the ampullary regions of the semicircular canals were most severely affected, but damage was also seen in the scala media, the scala tympani, the saccule, and the scala vestibuli. In the utricle, the lining epithelium of the membranous labyrinth was disrupted, and the lining cells of the vestibular membrane showed foci in which the membrane was disrupted.

And by the way, it is not true that only severely immunocompromised patients have systemic yeast problems. Apparently anyone who has ever taken antibiotics is a candidate, because of how antibiotics destroy bacteria that keep yeast under control. The science behind this can be found on YouTube, if you type in "The Science Behind Candida."


Message for S.

Before you throw yourself at a nerve section or anything else drastic - have a shot at some migraine preventative meds. The rocking boat feeling can be centrally mediated and caused by chronic migraine (with or without headache). It's worth a shot if you are at the end of the line.

This junk is life robbing at times and I feel your pain. But ask to try the meds. There is nothing to loose. Migraine is a great immitator and often goes mis-diagnosed. It's worth a shot.

Stay safe, Binx1965


Hi S,

I remember reading your posts. Thanks for the update as I wondered how you were doing. I have similar symptoms of swaying/rocking. Have you tried any medications? I heard it may take awhile to figure out which one works on you. -J


I'm so glad I've found this thread, it's been a relief to read all these posts and realise that I'm not the only one going through this. I can feel your pain! I've had this for 2 months now but I can't quite decide if I'm getting better because I have good days and bad days, although the initial intense 24/7 vertigo I had for the first 4 weeks is gone. I hate how unpredictable this is! I already had underlying anxiety issues before this so this whole ordeal has made it worse, I've been living in a constant state of fear/worry that it might be something more sinister like MS or a tumor, even though the neurological test (well nose touching, walking, etc) my GP gave me were negative and my GPs are sure its 'just' labyrinthitis that should 'clear up in a few weeks'. I feel like this whole thing has stopped my whole life as I'm in constant fear as to what it may or may not be that I've been having panic attacks/constant suicidal thoughts. They gave me an ENT referral my GP seemed concerned at how long it's been going on for which hasn't helped my worries. I'm wandering if any one here finds that intense exercise like jogging triggers vertigo? I had a completely symptom free day a few days so decided to go jogging, then when I stopped the room was spinning violently again and I felt a swaying sensation for the next day afterwards. This has happened to me several times so I've now stopped exercising for fear of it coming back :(. I'm really considered as to what this could be


Yes, exercise seems to make the disequilibrium worse for the next few days. In fact, even lifting heavy things or anything that affects my neck muscles (for example, 35lb toddler running into me) can stir it up.


If your dizziness is already better after 2 months then it sounds like you are on the road to recovery. You should really talk to your doctor if you are struggling with this mentally (which is completely normal) or perhaps try a gentle exercise which has a calming effect (I found running was too much with this condition, swimming was much better).

I would also recommend to anyone suffering from this for months/years to consider taking migraine prevention meds just for a few months to see if they work, I have had good results, I am still not out of the woods but have had a lot of relief, I wish I hadn't wasted months worrying about taking meds. If you want an alternative approach to migraine associated dizziness then you could try migraine prevention diet plus the herbs feverfew and butterbur (butterbur was recommended by someones neurologist on here and apparently has good results but only after a few months) good luck everyone

I havent written on here for a long long time and once upon a time I was a regular, looking for hope, looking for answers. We had a good crew here at that time and we all still keep in touch via Facebook, and I can tell you now that we have all recovered, some more than others, but we all lead normal lives.

Briefly my story: Woke up 2 November 2009 with spinning vertigo, I lived on my sofa for 10 weeks unable to move, stand or walk. Doctors tried to give me all kinds of meds to stop the dizzies but none of them touched it. I had all the tests at the hospital, CT, MRI, heart scans, brain scans etc and they all came back NORMAL!

I never left the house, couldnt go in shops or supermarkets, even being a passenger in a car brought on motion sickness. I survived like this for almost a year before pleading with my GP to see a vestibular therapist, which I was very lucky to get. I saw a fabulous lady who I feel saved my life. I was a wreck when I first saw her and she was so understanding and straight away said I had BPPV which my doctors and ENT doctors said I didnt have. How wrong were they - after a few weeks of doing VRT exercises she finally persuaded me to have it done. It wasn't very pleasant but it made an improvement. I have had to Epley done several times over the last year, along with VRT and neck massages. The PT diagnosed me with BPPV and Labs and said once she had successfully treated the BPPV then I should compensate fully to 100 per cent. It has taken a year of treatment but I am now there and I've now been good for around 6 months. So all in all it has taken 2 years.

I remember coming on here and reading someone elses post that had recovered and it giving me hope and this is the reason I am writing my story. I never thought I would recover, I've had so many ups and downs along the way and it actually feels wierd now not to feel that woozy swaying feeling.

Good luck to all of you that are suffering, this is a horrible condition but you will get through it, believe me, I did and so will you.

Shirley x


Hello Shirley, great to hear from you. So glad you are coming out the other end. I remember those desperate times.

Stay safe,

BINX1965


Hi to All on here, old and new,

I havent posted here for a while but do check in now and tnen. Sorry to hear of all the new sufferers, its a rotten illness to get as there is such a lack of understanding.

Shirley, what a great outcome for you, fantastic news. Must be great to get your life back, so pleased for you.

I have now been dealing with this for just over two years, like everyone at the begining i too really suffered at the begining, ie vertigo, unbalance, ear fullness, tinitus and terrible neck stiffness. Just over two years on i am at about 90% recovered. Still struggle with shop lighting and am sensitive to noise, but cope so much better now than i used to, a case for all of us having to. My balance has greatly improved but at times it reminds me that it is still there. Particularly when i have overdone it and am tiered. The main thing i am left with is tinitus, but have made that part of my life now! Still get ear fullness, and wonder if these symptoms will ever go but have got used to having them now.

I did not persue the doctor or meds route as i found them to have little understanding

and mainly dealt with it by gaining knowledge from this site and other internet sites. I did VRT at the start but found like others walking and getting back with day to day activities helped.

For anyone at the early stages of this illness it is very hard to imagine life getting back to normal but slowly and i mean slowly it does. its not something that you wake up one day and go WOW i'm better it is more of a gradual process and you suddenly realise you are having more good days than bad. I am hopefully nearly there and am so grateful for that as at times i have felt life has been passing me by and it is tough as know one can see or understand the illness. Cant wait for the day i am 100% like most of wish for on here.

Best wishes to everyone on here, old and new.

Wendy XX


Thanks Shirley and Wendy! So good to hear your stories and how this condition gets better, its hard to know when feeling terrible if there is ever going to be light at the end of the tunnel, it's been the worst thing I have ever been through but I am hoping I am now on the mend, fingers crossed for everyone too x


So great to hear from you, Wendy!!! I'm glad you are feeling mostly normal! I am kinda that way too most days!~ I got my first knock out drag out cold and it has not been to bad on the ol balance except in the dark. Weird. We all remember how bad the dark can be. I love to hear from you so please check in more often. Hope your kids are well too!!

Take excellent care, B


afternoon i came down with the dreadful lab 3 months ago.i had a sudden attack of dizziness when out one day.spent ten days in bed so dizzy but . no vertigo.given stemtil .said to see a very good ent consultant in February ordered a mri of brain and inner ears.got results on Friday all fine.said my dizziness will improve gradually but do not take medication otherwise the brain will not compensate.i am not dizzy lying down or driving in a car.he said season is lying down does not require your inner ears to balance and driving your brain knows you are sitting down eyes focus on road.do other people feel the same.i have become very anxious about how long it is taking to clear please can people win are better post and reassure me .i worry all the time.i have no balance problems or eye site problems just dizzy in my head when i walk. i am a maths tutor at a prep school so can teach on the board still hard to concentrat..this site is amazing as never heard of virus before and people cannot see it as you look well.also the ent guy said those tests they can do are not useful as they don't look at all the ear and it depends how you are on the day.best thing to do is walk and walk and try to lead a normal life.it will go .hearing test was perfect.he sees five new people every clinic in Kent.very nice man.my husband has been very kind and supportive i have two girls ten and 13.would love to hear of people win are now better from earlier posts.i have to believe in myself as worrying makes it worse.i still having ringing in my right ear.look forward to hearing from other sufferers.deb UK


Hi Everyone, It has been 3 months for me since I got struck with this dreaded virus. It started in early december. I originally thought that I was one of those six-weekers who fully had compensated and recovered. By January I was feeling great back to normal (with a tiny bit of brain fog). But in February I got a sinus infection and cold and the boat swaying and free falling feelings came back and still have not left.

Some days have been better that others. Some days I forget I have it and the next day I just want to crawl under a rock. But overall I cannot complain especially when I think back to how awful the initial attack was.

I find that just not being afraid to get dizzy or feel unbalanced really helps me get through the day. I kind of just roll on the high seas and sometimes even laugh about it to my family. I go shopping, I get dizzier but I fight through it and just keep it moving. Also, by coming on this site it made me realize that the recovery process is not linear. So when I slip back a bit after feeling great for a few days I dont panic. I know that the better days will become more frequent till eventually there are only good days and no more bad days.

Keeping a good morale and staying positive is THE most important thing we can do because with this virus it is sooo easy to slip into the ugly abyss of anxiety and never come out. Also I read somewhere that people who were more positive of their recovery made faster progess in healing.

Just remember everyone that this too shall pass and you will get better and when you are fully recovered you will remember this pivotal phase in your life that turned you into a healthier person who values life so much more.

Good luck to all and wish you all a very speedy recovery.

Melia


B, I often check into your posts to see how you are progressing. It has been one heck of a journey you must agree. What an illness, ok may not be life threatening but its been tough to cope with at times. Sounds like you are doing well. Must have been tough being on your own i really admire you, be so proud of yourself. Hope your daughter is doing fine, i know she has been a great support to you.My girls are fine, one has left school and is now working the other is busy doing exams.

Although i am so much better still wonder if will ever be the same and back to normal or will this thing always being lying dormant in us waiting to pop out. I do still get anxious and wonder if i do certain things will it set it of again but mostly carry on with day to day life. Still struggle with looking up still makes me feel slightly dizzy, oh well cant see the cobwebs as cant look up at them!!! Was never houseproud anyway!

Are you still doing your hikes! Good for you if you are, i do think walking is the best thing for this. Lets hope on day we can all look back on this and have learnt something from it, think it has made me more understanding of anyone suffering from illness and what other people have to cope with.

Much love to you B and your family accross the miles, stay strong.

Best wishes to everyone else looking in today.

WendyX


Hi Guys

I have had Labs now for nearly two months. Causing severe anxiety etc. I have seen an ENT Specialist. I am set to fly in a weeks time. Does anyone have any advice? Thanks to you all for this site. It is amazing & really helps.

Take care

Cathryn


Shirley is totally right back about almost a year ago there was a whole different crew of people suffering from labs. all of us today seem to have gotten up to about a 99% recovery. it only took me the longest 8 months of my life to get there. I also questioned myself all the time will i get better, or will i live like this forever? truth is everyone will come out of it eventually it just takes some faith, and courage. stay strong fellow labbies and you will recover.


Cathryn, You have to hang on and ride it out. You need to be as active as possible without overdoing it. The anxiety is part of this ugly condition and if you need some meds then you get some(they quell the dizziness too)! You have to take it one day at a time. It is very hard, but you can get where you need to be. It will be ok! I hike, bike, and do housework. In the beginning it was so very hard, but it gets easier as time passes. Some folk swear by VRT and you should look into that too. Listen to your body and rest as much as needed. Others have good information for you too.

Good luck! B


Hi Guys

Thanks for the response. I really do find this site a lifesaver at the moment! I am due to fly on Tuesday, just an hours flight so fingers crossed I will be ok! I am booked in for VRT at the end of April & the ENT Specialist took me off the dizziness meds as he said my body needs to learn to right itself. You're completely right the anxiety with this condition is horrendous. I walked into town today & had a panic type attack, racing heart etc. That has all been since the Lab diagnosis. Hope you are all well & thanks for the advice, I will keep reading for sure.

Cathryn :)


Cathryn , sorry to hear that you are suffering with this awful illness. At two months in it is still very scary and the anxiety is very much a part of it. This is perfectly normal, hard i know especially if you have never suffered with anxiety before. As B said do try and carry on as much as you can, but rest when you feel your body tells you to do so. VRT can help, but walking and general daily activities are also good. I know when i used to wash my car or cut the lawn for about an hour after i had to sit and rest and it felt like i was on a boat on a very rough sea! Gradually these chores become easier. Shop lighting was always my worst enemy and sometimes still is, but now i dont walk out of the shop i try to cope with it. You will find the longer you have it the less you are afraid of it and you can take some control back in your life, hard to imagine but slowly it will happen. Good luck with your flight, i havent any advice as i havnt flown since having this. Maybe drink lots of water and suck a few hard boiled sweets! Anyway take care, you will get better from this.

Wendy X


Wendy, you always make things sound so reasonable. Thanks for the boost!!! I missed you! Hope you have a great Easter Holiday and get to spend it with you kids! One day at a time still, but you're right! It does get more manageable!

Take care! B

PS. I have no advice for flying!! I have not done it yet~


Hi everyone, how are you all? I had a bit of a set back, very frustrating, but I started getting side effects with the amitriptyline, racing heart, high blood pressure (apparently due to the fact it's mixed with the meds I take for low thyroid). I am still on a very low dose but now having dull headches and wooziness, even though I am without doubt better than a few months ago I find I get really down about having had this daily for 9 months. They want me to go on pizotifen instead and want me to see a neurologist nearer to where I live so I can be monitored. Just waiting for appt with doctor number 180 (at least it seems like I have seen that many). Wendy, I don't know if you are in contact with Gloria who posted here a year ago who had very similar symptoms to me and I think saw the same doctor as me, it would be so encouraging to know she is better!! B how are you doing? Do you still have daily dizziness or do you have dizzy free days? Binx, how do you feel on the new meds?? I really hope they have given you some relief. I cannot wait for this all to be over and get my life back!


Alice, So sorry to hear about the side effects. Did they say why they took so long to surface and will the likely subside? Is it possible you are in a relapse? Gloria may check in from time to time to read posts so you might try just posting to her. I would like to think she is better since she has stopped posting! I'm sure she would love to give some insight as she is a lovely person. I do have somewhat dizzy-free days, but I often get that out of it feeling and I hate that. I also get that pushed to the side feeling a lot too. It depends on if I'm tired, stress out, or have been sick. I've been relapsing a bit lately since my big cold that I am struggling to get over. It has zapped my energy and I need to nap every day or I get yucky. I didn't have a good night last night, but I worked and went for a long bike ride with my daughter. Until I am well I need to probably pick one or the other. This cold is very slow and very stuck in my lungs. I have had the tummy bug a couple of times since I got dizzy and it sets me back too. The body just has to work so dang hard. I'm sorry you have struggling again and I hope things calm down soon. I get weird all over the place BP readings that have had me worried too. I think that this condition mixed with life is so so stressful and hard on the body and mind. I'll be thinking the good thoughts for you!!! You will get your life back....someday!

Good health to all, B


Hi

I haven't posted for ages but I do still check in every so often to catch up with people's stories. I was a regular for a long time and felt that as I approach my 3 year labs/VN anniversary this month I would post an update and some encouragement for all those sufferers out there.

Firstly, whilst I am not completely symptom-free I am a lot better than I was. Veterans of the site will remember that I gave up my job a year into this and I still don't work. All the resting and taking it easy has certainly helped me lots. I don't (touch wood) have any anxiety symptoms anymore. They were really bad at the beginning and receded over the first year. By the second year my balance was quite a bit better but I still had wooziness/swirly headedness most of the time, extreme fatigue and a terribly achey stiff neck. Another year on and all the resting means I don't suffer fatigue on a day to day basis. My neck, although achey, is nowehere near as bad and my balance is a lot better. I still have some wooziness but I am no longer really scared of it anymore and try to forget about it as much as possible. In the early days that was impossible. I was tense, on edge, scared to do things, struggled to mix with people or hold a conversation. Slowly but surely my confidence has grown and these things have become a lot easier. I am still a bit of a recluse socially but daily life is much better now and my energy is much improved although I do suspect if I pushed myself to do a lot I would feel more tired than I used to pre-labs and I guess if I went back to doing a desk job my neck would ache quite a lot more.

Wendy nice to hear from you and a big hello to everyone else old and new. I do want to encourage everyone to keep fighting as it does get better. When you feel your worst you cannot see the end and you think yur life is over. I was at absolute rock bottom during the first year. I cried all the time, lost 2 stone in weight, felt suicidal and thought my life was over. Now I feel so much better and mentally much more stable and happy. I haven't been abroad on holiday since it started but I feel at a point now where I could definitely cope with doing this if I wanted to and I feel confident I would have a good time. I am looking forward to being a bridesmaid at my sister's wedding in october and in the early days I dont even think I could have thought of attending a social event like a wedding.

Hang in there everyone, the progress is so slow you don't notice it but with time and as much rest and rehabilitation as you can get you will recover and the true you will start to re-emerge from the shell that this illness makes you in the early days. Life will be worth living again so please keep the faith and take each day at a time. Grab any joy from life wherever you can!

Much love to everyone Jemma xxx


Alice - just read your post.

I have just managed to titrate up to 20mg of Nortriptyline without any nasty side effects. Only been on the stuff for about 3/4 weeks so it's to early to say. Only just hit 20mg 2 days ago so need to stick there for a while. My target dose is 30mg. Nort is not as nasty as the Ami you have been taking and the side effects profile is considerably less, especially at the lower doses given for migraine. Target dose for migraine control looks to be anywhere between 20 - 60 mg of the stuff and for some folks it higher.

Pizotifen. Had a couple of months on it. Took 2 x 0.5 mg tabs at night. It worked ok but the effect seemed to have plateaued out hence the switch to Nort. Only side effect I got with it were some really vivid dreams - and I mean vivid. They were all pleasant enough but it was as if you were really there. Apparently this is common with pizotifen. Didn't sleep well at all on it.

If you have (or think you have) MAV as a follow on from labs/VN make sure you get hold of a copy of a book called 'heal your headache' by Dr David Bucholtz. You'll find a cheap copy on Amazon. This is your bible for finding a way out of MAV. Look no further.

Hang in there it will get better for you.

Stay safe everyone,

BINX1965


Hi Everyone. I'm new here and want to thank all of you for sharing your stories. 4 weeks ago I woke up to severe vertigo and was terrified. I have since been diagnosed with vn/labs. It doesn't seem like any doctor can give me a straight diagnosis. I still have dizziness, brain fog, ear fullness, ear ringing and eye twitching. But the hardest thing for me is dealing with the anxiety and depression. I'd never had a panic attack in my life until this happened. Now I feel so much hopelessness, and despair. It feels like I'll never get better. I have a beautiful 4 year old daughter and haven't been able to be the Mommy I was to her in weeks! Any advice would be greatly appreciated!

Thank you all for listening, and I hope you are all on the road to recovery!


evening mandy so sorry to hear you also have this awful virus.are you in the UK if so there is a brilliant face book site for labs. are you dizzy all the time.have you been given any tablets to take.anxiety is a common thing with this virus most people haave it because it is the unknown.i am getting better but compare myself on eek to week basis.it is hard going into shops and shopping centres.i was in bed for over a week to start with as so dizzy.i read all there posts on my mobile and it was such a great relief k nowing others had it do you have anyone help you right now with your child.i was told to walk as much as i could around the house as the brain needs to compensate the bad signals from the inner ear.let me know how you are xx


Mandy, Stay strong. You will be ok. There is a good chance you will recover over the next two months. I was told in the beginning "no less then two weeks no longer then 12 weeks" That is actually typical for MOST people who are effected. I know how hard and scary this is. You have to take it one day at a time. Valerian root can help with anxiety, if you are not interested with prescription, and Calms are also helpful. Rest as much as possible and be active when you can. It is hard not to get down and out, but there is hope.

B


Deb - I am dizzy all the time which really is awful, but I do my best to move around as much as I can. The doctor put me on prednisone, now doxcycline to no avail. Now he wants to start a diuretic for the ringing which makes me nervous. I also take many vitamins. The only thing I was given was Valium for the anxiety. The problem is I cannot take that during the day because I have my daughter. My husband's been helping out as much as he can with our child, but he owns his own business. So most of the time I'm on my own. :(

B - At first I was told I'd be better in a week or two. I'm finding that many doctors really are not knowledgable about this virus. It's been so frustrating to not have a clear answer. I was even told they were "assuming" vn/labs. Ugh!!! I will definitely try Valerian root because I am already on so many meds. I've also sought out counseling to better help me cope with this awful thing.

Thank you both for being so supportive and encouraging! It means so much to me to have friends who understand what I'm going through.


Binx, thanks for the advice, let me know how the nortriptyline goes when it starts to work. Were you told how long you would have to stay on meds? I was initially told it would only be 4 months but I have heard people being on these drugs long term. Don't like the sound of the pizotifen dreams but anything is better than pain and dizziness. I hope you are symptom free soon.

B - you must be completely fed up of having symptoms after this long, even with dizzy free days. I find that even though I have really improved, I am losing patience with this. I got up yesterday, felt fine, went to the shops and immediately got hit by pain in my eyes, I then felt off balance and exhausted for the rest of the day, that's just caused by a shopping trip. It's a shame I couldn't stay on the amitriptyline as I could feel a difference, I got side effects as I increased the dose, I ignored them for a while as I was so pleased to feel better but then I went swimming and could hardly do one length of the pool as I was so out of breath.

Mandy - I have a 4yr old daughter too, i feel for you! It was awful at the beginning, I didn't want her to see me upset but I couldn't even watch her running around. I explained I had a problem with my ear and it would get better but could take a lot of time. Both my children do my VRT exercises with me now! You might want to try gingko biloba, it's supposed to help heal inner ear. Also get lots of sleep at night, try go to bed and get up at the same time, my doctor said that the lack of sleep I was getting due to my kids getting up in the night, when i was trying to recover from labs, may have triggered the migraine disorder I now have. Try and do anything that relaxes you or makes you laugh (if you can!), I am sure you will be free of this soon. Take care.


Mandy, Can you try breaking the Valium up to a smaller dose and working your way up? It will really help with the dizziness AND the anxiety. I know taking meds is scary. I have had amitriptyline for like 4 months that I am yet to take so I understand, but you could really get a break with the Valium. It calms the inner ear. It is really interesting how benzos effect the inner ear. Valarian root makes you tired too. I take it sometimes to help me sleep. I'm sorry you are suffering and you are right, Drs don't know much about this disease. All you can do is your best and what you are comfortable doing. I know that Xanax has been a life saver for me. I take a low dose. I have improved greatly even though I have taken it the whole time. You have to do what you feel is best. I will be thinking of you! Counseling is a very good idea, good for you!!!

Alice, It is so very frustrating and I spend a good amount of time that way. I only do when having a bad day, but I guess that is how it works. I'm so sad you had to stop your med. I hope this next one does the trick. My job is labor intensive and after work I went for a really long bike ride....wow, it was so hard after that. I have been sick so I have this lung issue and am using an inhaler so it dried out my throat and I kept coughing, was exhausted, and got foggy, dizzy, and just plain down low. It was awful and kicked up the anxiety and misery. I had to work hard to focus and keep it together..so to say. I was upset, but I still have to take it easy and I didn't figure in the damage I have suffered due to this cold. This dizziness makes you think about everything you do. If you're not careful you will be so very sorry. Yeah, I'm running out of patience too. A gal from my parents hometown contacted me on facebook through a friend who, knew I have been dizzy, as she is dizzy too. Apparently there is a great dr in Great Falls, Montana who is well versed in MAV! I am about 3 hours from there and may consider a visit to him. I don't hold out a lot of hope for Drs, but he is known to know his stuff on the matter and says of the dizzies MAV sufferers are more likely to recover faster when treated properly. I'll report in if I get more info. Here's to hoping! ' Jemma, Great to hear from you and I'm so glad you are carrying on. It is such a long dang road. I hope you wake up well ASAP!

Everyone else....I hope you are fairing well!

B


morning everyone lovely to hear from you man dy.i am dizzy most of the time only relief lying down but can't do that as have two girls to look after.i do lots of exercises and male stud i walk for you you should just walk around the house i knowing hard it is at the beginning no one understands it unless they have had it.are you in UK if on face book look up the labs group fantastic just like this group.it will take time to go i am anxious take calm which help . how are you today love to all xx


Mandy - you have to keep the faith. I had all the same symtoms you do. At the beginning of the onset of the virus I was unable to keep water down and I had severe vertigo where i felt like I was falling through space. Despite all that, the worst symptom for me of this nasty virus was anxiety.

Its just tooo easy to have a 24 hour panick attack with this thing. In my first month and half I didnt have good peripheral vision, and I thought I would never be able to do anything again, drive or look to my side without this distorted lagged vision. I cried so much everyday. I cant tell you the amount of severe anxiety I had. I was so desperate. No one could solve this problem for me. The thing is all the crying was clogging my ears up and making it even worse lol.

You have to try to remain positive. You have to cling tighter to your faith and know that somehow there is a greater purpose for this happening and that you will emerge as a stronger and healthier person because of it. I Started really taking care of myself by eating healthy (lots of veggies and fruits), medidating, relaxing, getting at least 8 hours of sleep. Taking vitamins ANd my biggest help has been walking. When you are feeling anxious..go for a walk and breathe fresh air. (even its just a 5 minute walk..and if you cant walk open a window and breathe fresh air).

But here is the good news. Im at 3 months, and im 98% better. Most cases clear up from 6-12 weeks. My ENT also had it and it cleared up for him, my Eye doctor also had it and he came out of it, so did two other people I know. All healed in their own time. But they all eventually healed. Trust and have faith.

If you want to talk or have any other questions just let me know I am more than willing to help anyone who is going through this as I know how hard it is.

There is a season for everything and this too shall pass.

Melia


Thank you all for the support! It definitely helps calm me down a bit. I'm frustrated because I've been on so many medications, and nothing helps. I was on a high dose of prednisone. Now the doc has me on doxycylcine, which is an antibiotic. Labs is viral, so I'm not us what the point is there. Now a diuretic for the ear ringing (which is driving me crazy by the way). I feel like the doctor is just pushing pills at me!

Does anyone take vitamins that help? I already take vitamin D, vitamin b-12 and calcium due to deficiencies. It just seems pointless to continue the prescribed medications for no reason.

I appreciate the encouragement regarding the anxiety. It's such a hard illness to have because we look fine on the outside, but inside we feel so awful physically and emotionally! So nice to have you all because you understand.

I hope everyone is well! Mandy


Mandy, I did all the sameish meds. An antibiotic in case it was caused by bacteria(sometimes it can be), Prednisone in hopes to reduce the swelling in the ear, and then the diuretic was for water retention in the ear. I was allergic to the diuretic so I never took it much. It is all classical stuff directed at the illness. At least he is trying. I know just how frustrating it can be. I don't know of any vitamins that will help. There are a number of recommended supplements throughout these pages if you browse them. Good luck!

Happy Easter all!

B


Hi Mandy, I agree with B at least your doctor does seem to be trying although it's no comfort when nothing is working. Most doctors initially send you home with nothing. I was given betaserc from my ent doctor one month into labs which you could ask about, it helps with inner ear problems, some people think it's great for labs although didn't work for mine. I think vitamins are good (the herb gingko particularly), getting enough rest at night and staying active in the day but more than anything this is a big challenge mentally, getting all the support you possibly can (friends, doctor, this group etc) and if it continues then tell your friends and family to look up www.labyrinthitis.org.uk so they can understand how awful you feel and how stressful it is. I think labs, especially when it goes on for a long time, can really have a traumatic effect psychologically especially when no one can see you are suffering so much. If there is any way you could ask friends or family to help you out with your daughter then you can rest. You could also try relaxation audio tapes before you sleep to help you cope. You need a huge amount of patience but just know that nearly everybody on this site has got better. Take care, you will get through this.

B - the MAV doctor sounds worth a visit! I do think you need a lot of support and monitoring by an expert if you are going to consider any of these drugs. They are strong stuff but used in the right way I am sure they can be very useful for our recovery. Hope you had a good Easter. X


Melia - Hi, I was just curious about your recovery level as you reached the 3 month mark. I am also going to be at 3 months of VN this Thursday (not that I am keeping track or anything ;) My feelings of unsteadiness have pretty much subsided, but I still have a bit of brain fog and fatigue (made better by taking medications to control my newly found panic attacks), weird vision (objects jumping out of the corner of my left eye, especially under fluourescent lights at work and after extended computer use), and crackles and pops/drainage (?) in my affected ear. Of course, I am just guessing it is my affected ear since I never got a firm diagnosis after normal MRI, audiogram, VNG, and blood work. I was basically told "these things happen - you'll get better." What did you find was lingering at 3 months?

And, I hear you with the anxiety and panic attacks. I felt like I had completely lost my mind and life for the first month and a half until I finally got referred by my GP to a psychiatrist and therapist. After some trial and error I am now on a good mix with Buspar and Klonopin to get a grip on the anxiety and panic attacks, which made the fogginess and unreality 100x worse. I'm anticipating getting started on an SSRI soon to deal with the residual depression and overall crap feelings.

I recommend to anyone that feels like they are losing control to seek help psychiatric help immediately. I feel the sooner you can get anxiety and panic under control, the sooner you can start down the road to recovery. I understand that meds like Klonopin are vestibular suppressants, but I am on such a low dose and was having such awful panic attacks that it got the blessing from my ENT, as long as I continued with regular activity and exercise to keep vestibularly (just made that up!) active.

Also as extra reassurance for everyone, I know several people who have had this (undiagnosed) and recovered. One is now a medical resident who had it a few years ago...she said it took 3-4 months for dizzies and brain fog to mostly lift, 6 months to be back to normal. She went to ENT and neuro, had the whole gambit of tests, and got no diagnosis. She diagnosed herself years later when she learned about VN and labs in medical school. She's had no relapses except some odd feelings when she gets a cold. I also coincidentally spoke with a psych resident who just got over it. He also said 3-4 months, and just has very rare odd moments now. Had the same tests, with ENT just shrugging their shoulders as to what it could be. And finally a personal friend got through it after 4-5 months, also recently. And again, whole string of tests, no diagnosis. Same as me and so many others, apparently.

So KEEP THE FAITH. It will happen, we will recover completely. I have never been a spiritual person, but this has given me a new outlook on life. It has given me more empathy and compassion, more love for life, more love for my family and friends and strangers. And when I come out on the other side, I know I will be able to help others who experience this and give them encouragement and reassurance, as others have done for me. In fact, I plan to do a presentation to my coworkers on vestibular disorders in a few months, because people need to know they are REAL and they affect every aspect of an afflicted person's life.

Wow, this ended up being a lot longer than I planned! Good luck to everyone and HANG IN THERE!!


Has anyone ever flown with labs/vn? I'm due to fly in 10 days. it's only a 2.5 hour flight, but I'm terrified. I am also worried about my tinnitus.

My anxiety is over the edge right now!


Katie - I totally agree with you about getting help professionally. Anxiety really plays a role in recovery rate. Personally, I am on no medication other than some nasal sprays. Overall I feel pretty good. Im not 100%. But im close and happy with where I am. I can do almost everything I used to do, even dance... Only thing left is similar to you...sometimes I get the vision stuff you are talking about. Always have the crackling popping of the ears. But ive learned to deal with it. The other thing I have is sometimes I am little wobbly on my feet usually accompanied by a sore neck. But it doesnt last as long as it used to. I have some ear ringing which comes and goes and sometimes just pressure headaches and fatigue. Mind you I have sinus prolems so I am sure it doesnt help, but It wont be the same for everyone. IM sure if you dont have that problem you can revover even faster.

For the crackling popping ear pressure fullness feeling My ENT put me on saline antibiotic wash and cortocosteroid sprays to ventilate my ears as much as possible. It helped get rid of the blocked ear feeling I was having. He said the most important thing is to clear up nose throat and ears so that they are all clear and ventilated.

When I am walking outside I feel the best. I feel back to my normal self. Its a real blessing. I too feel the same as you, Im more grateful for life, love and feel like all the stupid stuff I used to panic over are so dumb right now. This illness puts everything into perspective in a very good way.

Mandy- I have not actually flown since getting this virus. But my ENT used to have to fly all the time when he had it and said it was fine and he gave me the go ahead to fly without any problems. He told me just keep my ears ventilated. So using ear plugs, and some nasal sprays ..decongestant and or maybe an anti-anxiety medication (because I am a super anxious flyer already). But I saw you said you were taking antibiotics, so you have to ask your pharmacist about what medications you can take at the same time. Also having read all 14 pages of this forum, I see that most people did really well flying, had more trouble with the crowds at the airport than the actual flight. There used to be a girl who was a flight attendant. So I am sure it will be ok. There is loads of information on those pages.

Try not to be anxious. DOnt waste the energy you need to heal with by worrying about things that might never happen. Take one day and a time , each hour at a time. If something does actually happen then deal with it then. Trust and have faith that you will be fine :) Everybody recovers and everybody will heal in their own time. Please let me know how your flight goes and how everything turns out. My prayers are with you.

Everyone else I hope you are all doing well and you are all in my prayers for a speedy recovery.

Melia


Mandy, I have not flown, but there have been people on these pages that have and have been fine. I read an article once that you should take you dizzy meds(Valium or whatever one has been given) before you fly to help calm your ear and quell your dizziness. I hope all goes well and you have a very wonderful trip.

B


Katie, I feel just the same, this illness has changed my perspective on everything and it has given me a new understanding of anyone suffering from long term health problems. Btw if you do find your symptoms drag on, ask your doctor about migraine disorder which you can have without a headache. It can be triggered by labs as it was in my case and can cause strange visual disturbances aswell as dizziness and tiredness. My doctor specifically asked me if my symptoms got worse when exposed to fluorescent lighting, that can indicate migraine. If you are considering going on an anti depressant, you can go on one that also prevents migraine such as amitriptyline or nortriptyline and kill two nasty birds with one stone.

Mandy, I didn't find flying affected me with labs but some people says it does if you have a cold. For me the airport was the biggest nightmare. Heathrow airport with labyrinthitis was like a horror film. I actually wished i hadn't done any flying in the first few months. Sorry I don't want to make you more anxious but the airport wasn't pleasant. I suppose it depends how busy it is when you go and how quickly you can get through. Good luck!


Hi Wendy

Thanks for the advice, I am slowly getting better. I start VRT at the end of the month. Do any of you guys get weird "heavy" like symptoms in your arms & legs?

Mandy I flew yesterday & last week with Labs, the flight time was an hour. Although I felt the motion of the plane a lot more than I normally would & obviously the descent & take off more than normal, it actually wasn't that bad. Like you I was very fearful. I had a bottle of water & kept sipping that & swallowing! You will be fine, it is the anxiety with this condition I hate the most.


Cathryn - yes i used to get that heavy feeling in my legs. ...feel like my legs are so heavy on the floor I cant describe it. It gets like that the most when the dizzy symptoms come on. That only reappears every now and then so its very rare now. But I also get muscle twitching, especially when anxiety creeps back up. Its all about managing the anxiety. Im happy you are starting the VRT. It will make you recover even faster. Good luck with it and keep us posted on how it goes. :)

Melia


I have decided not to travel right now. It's just too much only 5 weeks into this whole thing.

I'm beginning to worry I may have Meniere's or something...maybe even MAV. My tinnitus is driving me out of my mind today, along with the fullness in my ears. I just want it to stop!

I'm not so sure my doctor's even know what to do...but this noise is getting ridiculous. I wish they could just make a clear diagnosis so that I can better care for myself!

Thanks for listening!


I'm in week 3 and am seeing definite improvement on the vertigo. I'm still foggy when I go for a walk and get dizzy with fast head movements, but nothing like week 1 (nausea & couch bound!).

My anxiety is all around the hearing loss and tinnitus. My ear has felt full since the onset (April 1...no joke). I was on oral steroids (prednisone) for the first week to help reduce swelling.

Has anyone out there tried "intratympanic steroid therapy" (steroid injections into the middle ear)? I'm going to ask my ENT about it tomorrow. I've seen some articles saying that injections can have a beneficial effect on hearing loss (especially if given in the first 6 weeks).

Any feel good stories of people recovering from tinnitus and hearing loss? Inspiration need! ;-)


DH - 38 year old male

To all those suffering on this forum, your stories are heart braking and I hope relief finds you over time. I'm only in week 3 and I can't imagine going through what so many of you have for so long. ...not to say that I might not be posting here in a year too. My vertigo symptoms seem to be improving bit by bit each day/week and that kind of momentum is good for the soul. And everything I've read in the literature and on forums, it sounds like most people recover from the vertigo and spins (even if it takes a year or two). That news is also good for the soul.

My hearing and tinnitus however have not seen any progress. I think living without high frequency hearing in one ear would be barely noticeable in day to day life, however, the tinnitus can be a major disruption. I'm actually going through major anxiety with the tinnitus (my poor wife has had to deal with a few big breakdowns this week). From the articles I've read, it sounds like the prognosis for recovery from Labs-induced tinnitus isn't good (possible maybe, but not good). I'm starting to prepare myself for having to deal with it for life. If anyone has stories of recovery or learning to deal with tinnitus, please share--I'd be grateful.

Follow-up to injections... My ENT says there isn't conclusive findings that intratympanic steroid therapy will help with Labs-induced symptoms, but says that the theory is that some might get into the inner ear to reduce swelling. He said he's fine doing it if I'd like to proceed. With my ear feeling "full" (I think of it as inflamed), I am going to proceed. Staring tomorrow I will receive 1 injection a week for 4 weeks. I'll let you know how it all goes.


Hi DH...

I really feel for you. I am in week 5 of this whole nightmare. My vertigo is much better as well, but I get dizzy and feel like I'm living in a fog often...especially if I push myself too hard. I also have ear "fullness" and tinnitus. I do not have any hearing loss after 2 tests. I was on prednisone for 2 weeks, and now my doctor has me on doxycycline and a diuretic. He was thinking about putting me back on the steroids. :(

As for the anxiety/panic/depression, it's a major part of this illness. If you read back you'll see a lot of our friends here, including myself have suffered the same feelings. Rightfully so. It's very frustrating and scary to go through this. Like you, I have the tinnitus, and it drives me crazy. It has been constant for 5 weeks, and I'm unsure if it will go away. I too have had many breakdowns over the past few weeks. My husband is very supportive thankfully. There have been some days when the ringing is "better", and I'm able to cope fairly well. For the other days I take clonazepam to get me through (was on Valium). I am also seeing a therapist to help me cope.

I know you feel alone, but this forum is really wonderful, and it makes you feel like you're not crazy. There will be good days and bad days throughout your recovery, but try to stay strong, and relax. Believe me I know that is easier said than done.

If you need anything please let me know. I'm here whenever you need to talk. Good luck with the injections, and let us all know how it goes.

Mandy


Thanks Mandy.

I had the injection today. It was painless. ENT said they may or may not help, but felt good giving them a go (he's in the mindset of "let's throw the kitchen sink at this"). I have one a week for the next 3 weeks (4 in total).

If anyone is considering steroid injection, I'd suggest no anesthetic as the touch of the cotton swab could hurt more than the needle. He also didn't make a vent hole (he said no need for it). It was one quick prick. I felt a little prick, but it was really painless. My daughter pinches me harder when she catches me not listening to her!

ENT said this is a marathon, not a sprint, but that almost everyone comes through it. I'm fairly young and fit so he said he feels good about the prognosis (that was good for the soul to hear). He also thinks I'm coming along nicely for only being three weeks in. But said ya, it might take some time, be prepared from some ups and downs, be patient, but confident.

I have a great support network of friends and family--wife, parents, brother, parents-in-law, sister-in-laws, friends, coworkers--they've all be amazing. So important to lean on that network.

For those interested, here's been my schedule of "stuff":

Week 1 - oral steroids, anti-viral pills, Ativan & Gravol (all doctor prescribed)

Week 2 - picked up a bunch of stuff from researching around the web and asking a pharmacist friend...ginseng (for immune system), olive leaf extract (for anti-viral), lipo-flavanoid (to help circulation in the ear), gingko biloba (to help with circulation), zinc lozenges (might slow down the virus from multiplying as fast). I know none of these have strong proven results, but what the hell. I like being as pro-active as possible and if I believe the theory, the placebo effect couldn't hurt. (just make sure you don't over do any of them and make sure your doc knows what you're doing).

Week 3 - same as week 2 + intratympanic steroid therapy (shot of steroid into the middle ear)

As of week 2, I'm going out for lots of walks and doing some yoga. Even went for a head-above-water swim yesterday on a paddle board (that was a bit strange!).

Patience, confidence, keep active and live healthy.


Hey guys its been a while, i have been taking the sublingual vitamin B12 and i am pretty much cured. Very easy do the research on the internet. I have also stopped all my rehab. The results have been great. Good luck guys


Mikemi... I am taking sublingual b-12 for deficiency. I haven't been cured from this dreaded illness yet. I'm curious how much you took daily, and how long it took for you to see results.

DH...how are you doing? Feeling any different since the injection?


One more thing...does anyone take sublingual b-12 with an additional b complex vitamin?

Also, my doc wants me to have a lumbar puncture. I'm not sure how necessary it is, and I'm very nervous a about it. Not so much the procedure itself, but the possible side effects.

Hope everyone's well, Mandy


Mike, that is so great to hear!!! You suffered long enough! Best of luck to you in all your new adventures!!

B


Hi, here is my story. I experienced a light headedness one day when i looked up to the sky, later on that day I was forced to stay in bed as the dizziness became overwhelming to the point where I could barely stand up without having to hold on to something, later on that night the room went into a full blown spin this followed shortly after by vomiting. Over the next few days things settled down, but 3 months on the biggest issue I have is whilst driving, it appears that my ability to concentrate / stay focused whilst driving has diminished greatly. Also I'm in a bit of a daze most days, walking around feels surreal. Does this sound familiar to anyone ? also I can hear very slight ringing in my ears.My GP has diagnosed VL, brain scan and neck doppler came back clear.


Hi All,

Posted here a few weeks ago after being diagnosed with viral labyrinthitis and definitely think I am on the road to recovery but just wanted to ask if anyone has any of the same or similar related symptoms. The dizziness has pretty much gone and I am now back at work but still seem to feel totally thick headed a lot of the time along with the bizarre achy stabbing head pain I've has ever since I was diagnosed with labs. However after finally feeling like things were getting on the right track I have woken up this morning with a very full feeling in my throat along with what feels like a swollen patch which is painful to touch under my chin.Suffered quite badly with sinus pain etc whilst the labs was at it's worst so wondering if this is something similar but if other symptoms are on their way out surely new ones shouldn't be cropping up? All the symptoms I have had are consistently only affecting the right side of my head/face. After googling this odd tender swollen area (which I agree I shouldn't have done) it seems to be an area which affected by lymph glands (also the two areas of my head which have been painful and achy seem to be right where other lymph glands are too). So I guess my question is is this still all related? Or something else? Sorry for essay - bit of a worrier and the stress sure doesn't help!


ive been taking 4000-6000 mcg a day easily. It took a few weeks to feel a diference, and it gets better everyday. It takes the b12 a while to affect many functions in the body. If i take excessive amounts of other b vitamins it tends to bother me. It also helps after having a few drinks, just saying. Vit b 12 is a major vitamin wiped out by drinking.


Kathryn, you may just be getting sick and have swollen glands to go with. It is not unusual for new symptoms to pop up, but maybe just have it checked for peace of mind.

Sonia, I would have to say that is sounds very "normal" for VL.

I am having a foggy day myself. I hate that. I have had a couple of stressful days and the weather has been shifty the last week or so. Oh how this gets so old. I hope everyone else is great!

B


Kathryn, not sure what to say about swollen glands (that might be something different), but as for the continuing experience of head aches or fuzziness or "thick head"--that is totally normal for labs. Some unlucky folks experience it for quite some time after (as you can see on this board). From what my doc has said, and what I've heard from other suffers, the majority feel it for 3-5 months or so (but it could take longer...but it will go away).

My update...

Week 4

My tinnitus is still in full force and my ear still feels full. I feel like the dizziness has gotten a little better over the week. I definitely still have the "thick head". I talked to someone who had it for 4 months and they described it as feeling like you have a bowling ball bouncing around in your head. I also still have that disassociated feeling when walking around outside (fuzziness, things just aren't quite right). Balance is still pretty screwed (not thinking about surfing or playing hockey anytime soon!)

I've been having a hard time sleeping this week. My GP gave me 10-days worth of sleeping pills (ENT approved) to get over the hump (and man, those suckers knock me out). I hate taking sleeping pills and try to avoid them if I don't need them, but I think lack of sleep with this condition will really prolong recovery, so I'm going to use them when I need them.

As for supplements, I'm still taking lipo-flavanoid which includes B12 (www.lipoflavonoid.com), and olive leaf extract and zinc lozenges (for anti-viral properties). I ran out of Gingseng and am not going to bother getting anymore (I took it for a good 3 weeks+). I also dropped the Gingko Biloba as I had a few down days after trying it and even though it probably had nothing to do with it, I decided to drop it for now.

I got my second intratympanic steroid shot (a shot of steroid into the middle ear) yesterday--two more to go. I had a really good afternoon after the shot yesterday. Not sure if it was the shot, or just one of those cyclical "good days". The point of the shots is to reduce the swelling. The hope is that it might lower the amount of long term hearing loss (I have mild hearing loss in the upper frequencies right now). So I wouldn't say there is a short-term instant feeling or relief from the shots. I'm OK with doing them in hopes that they have an effect on long term recovery (and in the back of my mind, hope that it'll reduce the swelling and speed the balance issue too). Like I said above, I find it to be a pretty painless procedure so am happy to give it a go ("let's throw the kitchen sink at this thing").

I'm also taking full advantage of my friends and family (who are all AWESOME) and am unloading my frustrations daily. I'm a huge believer in venting.

Anyway, hope all of you are getting through OK. Hang in there.


Hi All,

Thanks for your replies - I have been back to visit the doctor and as you thought my throat is totally unrelated and I now have a lovely course of antibiotics to treat severely swollen/infected lymph nodes in my throat and neck - lucky aren't I??

This labs has really just thrown me off as the dizziness is totally 100% gone and I just seem to have been left with a blurry eye, headache and pain in my face! Oh well, as long as it's normal.

:-)


Hi everyone, well I am coming up to my 10th month of this hellish illness. Its without doubt miles better than it was but I still have surreal feelings in certain situations (shops, outside, grey weather etc), slight nausea, eye pain and headaches, strange muscle twitchings and stabbing pains now and again. I also see strange 'floaters' infront of my eyes. At least I don't feel drunk or completely disconnected 24/7. I worked out that I improve at a rate of about 5% every month, shockingly slow but at least improving..

I have stopped the vrt exercises now and just awaiting a prescription of pitzotifen which is supposed to knock the rest of this on the head. More than anything though I feel exhausted and I think thats just my body's response to a horrible year. I feel I could sleep for months.

DH you seem to be pretty much in control of this or as much as you can be one month into it. I really think lots of sleep is a good thing, something I failed to get in the early months which made things worse.

B, how are you feeling? Did you take that trip to the MAV doctor?? I hope there is some improvement for you. How long have you had this for now?

Mandy, why does your doctor want you to have a lumbar puncture? Are you seeing a specialist? A local doctor suggested I have a lumbar puncture in the early stages but when I saw a specialist they said there was no reason for one whatsoever so make sure you are seeing someone who knows what they are talking about...

Wishing you all a speedy recovery, keep strong


Alice. You sound like you are in the boat I was in a few months back. My labs/VN left me with a migraine aftershock. Consultant put me on pizotifen the kill the leftovers - but it only got me a little further up the ladder. Now trying Nortriptyline which is much better. I am just approaching my target dose of the Nortrip and am now 95 - 100% good most of the time. Funny thing with the migraine meds is that the same one doesn't work for everyone - so you may need to try a few. Dont be put off there are plenty to try until you hit the right one or right combo. Good luck in getting over this final hurdle.

BINX1965


Alice,

Are eye "floaters" a known symptom of Labs? I've had them for years. I had them checked out 15 years ago and the optometrist said they are quite common and nothing to be worried about. They look like little amoeba floating around. I barely notice them (usually just when staring at something white like a wall or the clouds).

"you seem to be pretty much in control of this or as much as you can be one month into it." .... Ha! I'm trying my best, but I wouldn't say I'm in control! I'm off the sleeping pills (took them for 4 nights to get over a period of high anxiety) and am sleeping about 5-6 hours per night. I'd like to be sleeping 7-8 hours, but I keep waking up early and can't fall back asleep. I'm sure it's the inevitable anxiety that comes with all this.

I just talked with someone who had this and said the aftershock lasted 18 months for them ("thick head" and "full ear"). They are 100% now.


Alice, so glad to hear you're getting so much better. You have been battling for so long!

My neurologist wants me to have a lumbar puncture. They think I may have extra cerebral fluid that is causing the tinnitus to hang on. Frankly, I am terrified, and my regular physician agreed that it was a good idea to have the LP. I have no idea what to do.

I am having a really bad week of ups and downs. I felt for a while that I was improving. Now my dizziness has come back, my ears are full and ringing like crazy, and my eye twitching has returned.

I just wish I could have my normal life back. I just want to be the wife and mother I was and want to be again!


my apologies for not posting for a while and thanks for the comments, been busy moving to a different apartment and didn't have internet, in regards to Migraine medication unfortunately i do not suffer from migraines nor have a had any history of Migraine i tried a few experimental vertigo drugs they all didn't work,

i have some form of mal debarquement as a direct result of the labrinthtitis attack, its funny that i literally went to bed one night and woke up and have never been the same since, i am seeing one of the best neurotologists in Australia and on the world stage and he is confident i can improve back to 100%, the operation is sort of a last resort thing.

I find it interesting that as a child i suffered from severe ear pain and had to have grommits in my left ear, also had many infections perhaps the damage was done then and furthered by Labrinthtis leaving me with crippling vertigo.

In a way im kind of used to it, it doesent bother me anymore im aware that i am rocking / swaying everywhere i go even while sleeping but i am kind of used too it now so it doesent affect me as much as it used too, yeh life doesent glow like it once did, but i cant imagine how happy i will be the day this feeling of motion 24/7 ceases.


Thanks Binx, so pleased to hear there is an end to this and you are so much better, what a relief for you, it's hard to describe how this feels to people who haven't experienced it.. I am hopeful about the pizotifen but at least there are other things to try if that doesn't work. Glad you have your life back! I am hoping to get there soon!


Mandy I am so sorry you are having to deal with the added anxiety of having a lumbar puncture, I imagine they saw something on MRI scan? I know what you mean about wanting to be the wife and mother you once were, this illness has felt like a battle and I have had some very dark days and thoughts but then somehow I push myself to keep going and reminding myself this will end and it will for you too. If you feel confident in your neurologist then I would go ahead and have it done. At least you will be nearer getting the treatment you need. In a few years time you will be looking back on this and thinking of this as a bad life experience but you got through it.

DH - yes I think floaters are completely normal for most but when they are accompanied by eye pain like I have then it can be part of the migraine condition. I hope you get to increase your sleep soon, the anxiety this causes is really awful. I bought one of those electric neck massagers and I put it on for 15 mins before bed and that helps a bit with sleeping, anything is worth a shot!

S - I don't know how you have managed to cope with permanent dizziness all this time! Are you going to have the operation?


Alice, I think I am the same. Lots of good days with some crappie ones splashed in. I have been doing this pretty much for 2.5 years. The first year just dizzy spell then the last 1.5 all the time. It has improved since it became constant and someday I hope it leaves completely. I get really foggy exhausted days and then a dizzy being pushed to side feeling. I dislike it. No I have not gone to MAV doc. Let us know how your new meds work! I hope they are the answer for you! I hope your kids are great too!

I was told that floaters can be caused by migraines, but there are probably many other reasons. I have them too.

Hope everyone is feeling better each day.

B


Someone added me to a group on Facebook called Migraine Associated Vertigo. In case anyone is interested.

B=)


Hi Everyone,

I know I haven't posted in quite awhile, so I wanted to give an update. I've been on a candida diet + supplements for 2 months, and that's helped with my sinuses and reduced my migraines. I also have less morning nausea, although I'm not sure if that's because of just time passing and/or VRT. But although my sinuses cleared, my ears were still full and felt clogged, so I started taking a supplement called Antronex which is supposed to clear mucus from the ears and sinuses. It's definitely working. My ears are slowly clearing. I would highly recommend Antronex for clearing the ears. It's made by Standard Process.

The sinus issues and migraines abating made me realize that one of my main problems is still severe neck pain, so I also started chiropractic treatment for my neck. He says that my upper cervical spine is really out, and that I have decreased nerve flow to my brain and ears. He did an x-ray that confirmed that the top two bones of my spine are severely out of alignment. He also showed me a spine chart in his office, which shows in clear print that these top bones can cause problems with migraines, vertigo, dizziness, and sinuses! Apparently the inner ear is one of the major areas affected by a misaligned atlas (top bone of the spine). After a month of adjustments I have less severe neck pain, but the neck is still so out of alignment that it's too early to tell if it will help with the labs. But I'll continue to update.

Take care everyone, and I hope everyone continues to feel better.

Love, Anna


I dont know how ive managed to cope so long but i have had bouts of severe depression which naturally occurs with such a debillitating long term 24 hour a day illness, i pray everyday i will one day be motionless like i was prior to the virus.


B - I know what you mean about foggy exhausted days, that's generally how I am all the time at the moment, you need a medal to have coped for 2.5 years! Glad to hear there are lots of good days too!

Anna - good to hear your symptoms are getting better. There seem to be so many theories around the neck issues and whether they cause dizziness. My dizziness coincided with very bad stiff neck which I still have. However my neurotologist said it was not the cause of my dizziness but then i have read that some chiros/neuros say it can be. It will be good to know how your treatment goes, really hope it helps!

S - I hope you have had as much support as possible for depression and have a good doctor. This illness is the most testing thing I have been through, the only thing that has helped has been trying to distract myself with anything funny, lighthearted to focus on, initially TV as I couldn't read without feeling dizzy but now I am getting through loads of books. I think the most important thing for me is to try and remember that when I am having a bad day or a bad week that this will improve soon and to just be kind to yourself while it's bad.


This disease is destroying me. They haven't officially diagnosed me with labyrinthitis, but they have ruled out almost every other thing. I went to an inner ear specialist and he said I have symptoms of labs but I tested negative on all his inner ear tests. He's unsure if I have labs or not. I have no loss of hearing whatsoever.

This has been going on for 4 months, with almost zero improvement. My symptoms are... feel like the floor is moving, feeling of being pushed to one side, dizziness, imbalance, panic attacks, feeling of my legs being like rubber while walking in quicksand, brain fog. Computers make it worse, motion makes it worse, anxiety makes it worse, sodium seems to make it worse(not sure). This has to be an inner ear disorder, right?

4 months is a LONG time to see almost zero improvement. I've read about a few people dealing with this for almost 1 year. I'm doing vestibular exercise with almost no improvement.

Please help me, I feel like I'm dying. Worst experience of my life by far.


Hello all!

I'm one of the veterans checking back in. I Originally started posting back in 2009. My VN started suddenly in June of 2009.... that means I am nearing my three year anniversary with it and I would say I'm at about 90% recovery which is AWESOME! It has been slow and miserable at times, but I did improve and I'm so much better now than I was when this all started. I don't know that I'll ever be back to how I felt pre-VN, but I'm okay with that.

Now please don't let the fact I've been dealing with this for three years scare you. I am one of the very very few people who have suffered that long. There are reasons for that. I believe the #1 reason is that the VN caused recurring BPPV which makes it difficult for me to truly compensate. #2 - I didn't get a diagnosis for a long time. In fact I never got an official diagnosis. I have a congenital heart disease which everyone wanted to blame my dizziness on. It also didn't help that my ENT tests basically came back normal. #3 - I kept my head still for a long time. I know this sounds silly, but before I realized what was wrong I didn't want to bring on the dizziness so I tried keeping my head perfectly still which lead to neck strain/spasms/pain that I am still dealing with. My neck issues also caused muscle twitches. I also had terrible head pressure at the beginning. Keeping my head still kept me from starting to compensate. #4 - When I finally did start VRT I went overboard. I think VRT is important, but I wanted so badly to be well I went crazy with it which messed up my neck even worse.

A few things I've learned:

- YES, VN/Labs can cause whatever crazy symptom you're currently experiencing. I developed a huge eye floater the same day my vertigo began. I hypothesize the same infection lead to both, but who knows. All I know is they're associated.

- People (including doctors) who haven't experienced it will never understand. That's why places like this are important.

- Don't go overboard with tests and make yourself crazy trying to find THE ANSWER. You may never get a diagnosis. If it's inner ear related it likely will get better over time... even if that happens incredibly slowly. If it doesn't improve or it gets worse you may want to look elsewhere.

- I've seen lots of suggestions for vitamins/diets/exercises/etc. You know what? If it makes you feel better, do it! That's what matters.

- Same thing with benzos. Sure, you don't want to go overboard, but especially at the beginning, when you need them, take them.

- It's okay to cry. I knew I was truly improving when I stopped crying over how I felt.

I wish all of you well on your road to recovery and remember that most of you will be well in a matter of weeks rather than years.

One last thing. I decided at the beginning of the year that I felt well enough to get on with my life. Now, I'm pregnant with our first baby :)


Alice i have confidence the lightheaded feeling will improve it disappeared for me after a year, infact everything but the vertigo moving feeling did, including light sensitivity, noise sensitivity, ear pain, its all gone for me


Neilius,

That is so dreadful. I'm so sorry. It sounds as if you do have an inner ear disorder. I've been suffering for 16 months, and it took a good year before I noticed any definite improvement.

I've done a ton of research on this since being ill, and I've found out a few things. One, it seems that inner and middle ear and sinus problems are related to digestive disturbances, and that they can be improved somewhat through diet. (The Mayo clinic stated in 1998 that 96% of all sinus infections are fungal, and fungal infections are related to overuse of antibiotics and ingestion of sugar which creates yeast imbalances). What I would recommend (and what I did to start to improve) is to experiment by cutting out all forms of sugar and sweeteners, dairy, gluten, alcohol, and processed food, drink a ton of water, and take large daily doses of vitamin C and lemon bioflavanoids, also drink daily ginger tea made from fresh grated ginger and take daily 30 minute hot epsom salt baths. If your ears feel clogged, also take Standard Process Antronex to clear the mucus from your ears. Try this for a month. If this helps your symptoms improve, then you have a yeast imbalance and you may want to look into doing a candida cleanse. I am currently doing one, the McCombs plan. In the meantime, stick with the vestibular exercises (they will eventually help your brain to stabilize), take deep breaths, and try to rest and relax. Meditate if possible to calm your nerves. You can also try this test: March in place for 50 steps with your eyes closed, then open your eyes. If you rotate at least 30 degrees in either direction, you have vestibular disorder. Good luck. This is the worst illness in the world, but most people eventually seem to get over it. You should also get a head MRI if you haven't done so already to rule out the worst. And sometimes the neck can be the problem. Keep us updated.


Hi All,

What a wealth of knowledge you all have, I've found reading these comments really helpful.

I was disgnosed with Labs early January, so I'm into my 5th months with this horid illness and have just been signed off work for another 2 months !!! I have 2 little girls who thankfully are at nursery 4 days a week as I feel that I can't look after them and enjoy them with this horrid illness. Luckily we have private medical so early on I had a MRI scan and then I had the tests done on a revolving chair and warm water fed into my ears, these tests were horiffic and I cried all the way home, thankfully my husband drove me as there is no way I could of got behind the wheel. I started my Vestibular Physio 6 weeks ago and really went for it for the 1st month and the recovery was amazing, I even started coming off my medication. Then my recovery took a massive tumble and I'm back to square one ! So if I can pass on one piece of information - Then pleae do not rush your recovery like me as I'm now on a rollercoaster of emotions, wondering when I am ever going to enjoy life again. wish you all the best with your recovery.

Stay strong.

Tia


hi Tia are you in the UK .i am also on month five.what are yours daily symptoms .i am dizzy most days try to do my exercises but hard some days.i had a mri of brain and ear all ok.ent said was a virus that attacked my ear and will get better.are you on any medication .i have children but older.must be so hard eor you. what exercises are you doing. love to hear from you this illness is so awful and other people love to all


Hi folks:

It's been a while since I have posted, so I thought I would give you an update.

I was originally dx'd with Labyrinthitis back in early 2010. I had all the classic Labs symptoms including the dizziness, drunk feeling, floating feeling, anxiety, crying fits, etc.

I went form doctor to doctor and had lots of tests. All were negative. I even had a test for Lyme disease. Also negative.

I continued to be ill. My symptoms would wax an wane.

I finally found my way to an alternative doctor who recognized my symptoms. She suspected I had Lyme disease and related co-infections, Babesia and Bartonella.

Lyme and Babesia, in particular, can cause Labyrinthitis and Labs-like symptoms.

"Impossible" I told her. I don't recall getting bitten by a tick, I never had a "bulls-eye" rash, and I had a blood test which was negative.

She told me that >60% of Lyme sufferers don't recall a bite or have a rash. And the standard ELISA test misses >70% of cases. The CDC estimates 9 out of 10 Lyme patients gets misdiagnosed.

So..she gave me a better test, a Western Blot from Igenex (www.igenex.com). This isn't your average Lyme Western Blot. It is much more sensitive (think HD television vs SD.)

I came back highly positive.

I've been in treatment ever since and am pleased to say I'm nearly recovered. But the good news is my dizziness is now 100% gone. Labs is gone. Period.

I have since met dozens of other folks who were originally diagnosed with Labs, VN, MAV, or Meneires and it was really lyme and co-infections.

So..I encourage you all to consider Lyme as the root of your illness. John Hopkins Medical Center states that Lyme can cause Labyrinthitis.

So, if you have had Labs for a while and haven't compensated, and if it is accompanied by any of the symptoms below, strongly consider lyme.

Just know that Lyme is controversial. Most mainstream doctors don't know who to diagnose and treat it. They will only treat it for 4 weeks and typically need 1-3 years of treatment to get well.

You really need an ILADS trained LLMD (Lyme LIterate MD from ilads.org). They are the best chance at diagnosing/treating.

Also, watch the 2009 documentary "Under Our SKin" on Netflix / iTunes / Hulu. (Oscar Nominated.) It shows patient after patient, most of whom were misdiagnosed for years before finally getting well.

Or google "Dr. Burrascano's Treament Guidelines." The "lyme bible" for treatment.

Also check out flash.lymenet.org Tell your story. A lot of folks describe the same and are now well.

Here is a symptom list. If you have Labs and the following. Just a note that sometimes the symptoms wax/wane in 4 week cycles. And sometimes symptoms disappear altogether or new ones show up.

Be well

Brad _________________________ From www.canlyme.com

Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup ) Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular, oval and spreading out (more generalized) Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss Headache, mild or severe, Seizures Pressure in head, white matter lesions in brain (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy, Horner's syndrome) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety

Mental Capability

Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain

General Well-being

Phantom smells Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover


Hi All, I'ts been a long time since I've been on here. My daughter Sydney was diagnosed with labs last year. 11 doctors later I ended up taking her to a specialist at UCLA and a Dr. Baloh diagnosed her with Migraine Associated Verdigo. So thats what we went with. So she started eating healthy , wearing sunglasses, resting, exercise and all the basic good stuff. She has been doing pretty good, except her vision is still bad with the static vision and shadows. But I wanted to come back and thank everyone for being here and helping me through one of the worst times of my life. I hope everyone starts to feel better soon. Now I am searching for other sites for myself as I am diagnosed with colorectal cancer. 2011 and 2012 have not been good, not good at all. Take care everyone and thank you again! Kathy


Kathy, I am so very sorry to hear about your diagnosis. I will think of you with many positive thoughts. There is a Migraine Associated Vertigo site on Facebook that you can look into for Sydney. I have been wondering about her for months now. I am so glad she is seeing some improvements. I hope she sees meany more. Please check in from time to time if you can.

I will be thinking of you both.

B


I highly recommend migraine, tinnitus sufferers see Ian Jordan a behavioural optician www.jordanseyes.com. I have a history of horrendous face pain, allergies, labs etc but actually went to a talk by Ian as my Son has autism. I ended up being diagnosed with visual processing problems. My red glasses have been life changing, only dehydration headaches since. If you are in the UK then it may be worth a try!?


I've been in touch with someone who came down with labs 19 months ago and after a year came through it. I thought her story could give some hope.....

I'm sorry to hear about the labyrinthitis. It is pretty awful. Things will get better although it is hard to imagine in the beginning. I also did not get much from the ENT as I don't think there really is much for them to do. I was prescribed SERC, controversal as to whether it is actually effective although there were no side effects I noticed form taking it and I think it helped. I also was on regular Gravol which helped the nausea.

I saw a few vestibular rehab people who were super helpful with ideas to start to learn to compensate for the changes in the vestibular system and it was nice to feel like you were doing something to help the condition.

Unfortunatley the fuzzy head feeling lasted the longest, the tinnitus has improved alot and I now only have odd bouts of it but it is not there all the time.

I got back to work after 7 months and pretty much back to all activities--surfing, skiing, running, etc--around a year. I still don't feel good swimming with all that head rotation but am generally back to 90%+ and it has now been 19 months.

The other thing suggested to me by a vestibular rehab person was a very low in sodium diet and she reported that she had some patients who had a significant decrease in episodes of vertigo and dizziness with this dietary change as it effects the fluid balance in the inner ear. I think it may have helped that full thick feeling in my ear when I did this but hard to know as things change slowly and it may have been time as well.


I'm new to the board, but not new to dealing with dizzines, vertigo, constant ringing in my ears (with varying intensity), lightheadedness, and frustration! I have been dealing with this for years....and still not sure that the doctors know what it is...I have been "diagnosed" with an autoimmune inner ear disease, which they say they can do nothing about, but the description of labyrinthitis sure rings home, too. I'm looking for a reliable specialist to go to for help as my dizzy episodes seems to be getting more frequent, unpredictable, and intense recently, so anyone with help or advise out there.....it sure would be appreciated....Thanks!


This message is for S.

I had all your symptoms and the last of it was the rocking, swaying while still or laying down. This weird internal constant movement even while sitting down. It almost felt like there was a helium balloon inside me that would be floating through my body back and forth. Sometimes it would be more of a calm sway, most of the time it would be strong.

I had it for 6 months and the only thing that helped at all was seeing a PT who worked to get my neck aligned gently and then an Osteopathic doctor who adjusted my skull bones (again gently). It didn't happen over night, but slowly I saw improvement to the point that one day I just noticed I was sway free. Unfortunately I got into a near car accident and everything got messed up again. I'm starting all over, but I am hopeful that it will get better again with the PT and Osteopathic work. Take care everyone.


Here's another message from a contact of mine that is 19 months into the condition (back to work after 7 months, back to sports after 12 months)...

That's great you started the vestibular physio. It is quite nausea inducing but I think helpful.

The tinnitus probably lasted a couple of months but gradually reduced over that time. The other symptoms (fuzzy head and just not feeling quite like you can focus) seemed to be very much related to the tinnitus and as I understand it all relates to the extra pressure in the semiciruclar canals from an excess of fluid (cause unknown) putting pressure on the nerve. The current level of tinnitus does not bug me much at all. It isn't present unless I have a bit of a relapse and then when it returns it seems to all come together (the full feeling in the ear, tinnitus, etc) but may only last a week or so and much more mild then previous.

My balance is back to normal now and I don't feel as if it is any different to before this all happened. The only thing I noticed with surfing is that I feel a bit worse for about a week after each time I go, but I don't feel like my surfing is any different than from before. I wonder whether being turned around a bit by the waves throws me off for a couple of days just because my system maybe isn't as good at accomodating to those positional changes. The skiing feels just like it did before and I feel fine after it. I guess your head doesn't move around as much as it does in surfing. About the only thing I still struggle with is swimming laps. I still don't like to turn my head quickly or often as I think those movements are still a bit provoking. I did have a long flight in March and that was fine as I had heard the pressure changes may have been an issue but they weren't which was great.

The plugged ear feeling still comes and goes. I think it was there for about 4 months all the time and since then gradually decreasing but probably the one symptom that still remains more than the others. However I guess I am used to it and it is decreasing and not always there now so much less of a bother then it was initially.


First of all - apologies for such a long post - so long in fact some of it may get cut off at the bottom. Recently recieved an e-mail from Jill C asking if I could post my list of symptoms suffered with this junk. Hopefully this will demonstrate to anyone new to this horror that inner ear probs cause all sorts of weird and whacky stuff. Remember you are not dying ! Although at times it may feel like it ! Those that have been around a while will remember me from when I was in the midst of this junk................. this site and those using it helped me a hell of a lot. For that I am eternally grateful and I thank the many veterans who still struggle (but cope heroically) to this day. I started off with the standard labs/VN stuff around Jan 2011. Recovery plateaued around July 2011. Looks like the Labs/VN had triggered chronic migraine as was re-diagnosed with MAV around Nov 2011 and started migraine preventative drugs around this time. Worked my way through a couple of different ones until finally hitting on the good stuff - Nortriptyline in Feb 2012. Currently sitting at about 99-100% recovered from this junk. My main bit of advice when dealing with Docs/Medics is assume nothing and question everything - particularly if you have not recovered within 6 months. After 18 months or so I am good to go !. Anyway here is that list, or as much of it as this post will take before cutting it off at the bottom: � Constant nausea and sickness � Constant sore throats and swollen glands � Face swollen left side (front of ear to jaw line) � Severe neck pain (originally left side only with swelling - now bi-lateral) � Neck / head tilted and not straight � Chiropractor refuses to work with neck (severe vomiting following first visit) � Tinnitus (originally left ear � now both). Tinnitus changes significantly with head movement. Cracking noises. � Loud buzzing sounds both ears (intermittent) � Vision problems (slow tracking) and vibrating / flickering at edges / vision jumpy (twitching) � Feelings of floating and vertigo (crowds / movement / patterns / on waking) � Palpitations and feeling that heart rhythm is changing / excessively high BLOOD PRESSURE. � Fatigue and tiredness � with constant night waking (need for 12 � 14 hrs rest)(plus afternoon rest 2 hrs) � Difficulty watching TV (flicker) (sometimes fell like passing out or falling backwards) � Difficulty using a PC (flicker) (sometimes fell like passing out or falling backwards) � Difficulty reading as words blurring and jumping around on page (black print on white background is worst) � Unable to tolerate combination noise (TV / people taking / washing machine / radio) � Unable to tolerate conversation (more than one person speaking at once / phone conversations) � Unable to tolerate fast motion or busy environments (crowds / traffic / supermarket) � Unable to drive due to vision problems (still can only drive short distances and not at all some days) � Store lighting and ceiling heights appear to cause problems (ok in some stores but not others) (fluorescent lighting combinations / flicker). Tesco is the worst culprit. � Constant violent headaches / migraines (never seem to be without low level headache) � Motion sensitivity (balance off / vertigo after car journey) � Light sensitivity (bright sunlight / car headlights / street lights / television) � Feeling hot (opening windows in middle of winter to cool down) � Burning feet (particularly right foot) � Problems when passing from dark to light areas and vice versa � Feelings of severe pressure in head and ears � Concussive echo in left ear � Difficulty walking and coordinating / constant tripping (gets worse with distance travelled) � Problems focusing (eyes not adjusting focus) � Vertical double vision (best observed when looking at stars on a clear night) � Increased perspiration � Feeling of internal tremor on waking � then disappears � Feelings / sensations of anxiety and nervousness (for no apparent reason) � Little or no ability to concentrate for more than a few minutes (poor short term memory) � Memory problems (could not remember house number or postcode) � Forgetfulness and problems with speech (words mixed up) � Problems with writing and spelling (feel IQ has dropped 50%) � Symptoms always worse in morning and tend to ease as day goes on � At times feel like vision is in 2D instead of 3D � Feelings of severe �hangover� but without the fun beforehand � Headaches in back of head spreading over left side � Pain around left ear (skull area) � Pains in ears (particularly left) � Atmospheric pressure changes exacerbate symptoms (can tell what the weather is like before the curtains are open) � Eyes feel like they are being pulled by magnets and struggle to focus / things jumping around. � Feeling of movement in back of skull / head (steel balls rolling around) � Feeling that right leg is dragging (and also that one leg is longer than other) � Intermittent numbness / tingling along side of right hand and 2 fingers / right arm / right leg. � Tinnitus worse on waking or after lying down � Feeling of motion or floor moving after getting off an escalator or lift � Posture blown with deteriorating physical conditioning � Sunlight and flicker through trees whilst walking or travelling in car affect vision and balance � Eyes feel stiff to move / feeling of movement in back of head when eyes move. � Pain behind eyes (particularly left eye) � Problems with patterned floors and surfaces (stripes) also some floor coverings undulating moving in waves.

Best wishes to you all. I hope you have better times ahead. BINX1965


Thanks J but ive had all that done already by a chiropractor a while ago when i first got ill, ive had it for 3 years 24/7, there is something seriously wrong with my left inner ear..

i havent had a single days rest from this rocking vertigo or a second either, i went to bed one night in November 2011 without any symptoms , woke up with the room spinning visually and have felt this feeling every since.


Hi Binx:

Amazing, your symptom list vs the one I posted re Lyme disease above. They are identical.

Hope you are doing well.

p.s. I also had all of the symptoms you list...but mine were caused by Lyme (and Labs which was caused by Lyme.)

Thanks.


It's been a month since I posted on here. I've had this dreaded THING for 5 months. I've had MRA's, MRI's, heart testing, bloods....They've found nothing.

I've improved about 10% in 5 months. A couple things that have slightly helped me deal with LABS... sunglasses, 8 hours sleep, less computer use, vrt exercises, keep your sodium around 2000mg daily, xanax(be careful, very addictive drug). Some of you might want to look into sleeping pills.

Try to keep stress at a minimum with this disease, easier said than done.

Try to stay somewhat active if you can.

I'm 5 months in and only 10% better. I get strange headaches with my LABS...very scary. Small rooms are the worst for me. Try to get outside....being outside will help you readjust.

Honestly, I'm 5 months in and I don't see the light at the end of the tunnel yet. Worst experience of my life by far, nothing even comes close. This has totally ruined my life. I now know things about human suffering that most people will never understand.


Neilius,

I had only about 20% improvement at 5 months (I'm now at a year and a half). It also was/ has been the worst experience of my life by far. VRT was the first thing to really help, but also for me what helped a lot were daily epsom salt baths, ginger tea, massage, and change of diet. Most improvement was seen after cutting out gluten, dairy, and all processed and most restaurant foods (MSG), and more recently, sugar and flour. A ton of research connects headaches and vertigo with diet (mostly MSG and gluten) and another ton of research connects ear and sinus infections with diet (most specifically sugar and dairy), and it all has helped me a lot. Going on an anti-candida diet has given me the biggest improvement so far. On YouTube, look up "The Science Behind Candida," and watch the videos by Dr. McCombs. He explains how even one dose of antibiotics can cause lifelong health problems, as they kill a lot of your immune system. Your immune system can also be killed by excess stress, all of which contributes to an overgrowth of candida in your gut which can invade and damage many systems in the body. His plan helps to rebuild the immune system by balancing the gut flora (70% of your immune system is in your gut). I'm on Dr. McCombs plan. From personal experience I can definitely say it works. I now have only sporadic morning nausea when before it was every day, my migraines are less often and less severe, my sinuses have cleared, and my digestion has improved. I also found out that I have a very crooked neck, which may be contributing a lot to the problem. I am now going regularly to a chiropractor, but so far only minimal results from that. But try at least the baths and the tea and eliminating gluten, and see what that does for you. Good luck and let us know how it goes.


Anna,

18 months is a long time to have this dreaded disease. I really feel for you. I hope you're at least close to normal. Diet definitely plays a role in recovery and prevention of labs. I've noticed that too much sodium or sugar really aggravates symptoms. I'd tell anyone that has labs to eat clean....veggies and meat. I really envy the people that only have to deal with this for 2-3 months.

Your crooked neck could definitely be contributing to your labs symptoms and slowing your recovery process. Professional massages and neck strengthening exercises with a physical therapist could help. The neck issues could be slowing blood flow to your brain. Labs seems to cause tight neck muscles in many people, which can cause neck problems. Good luck.


Today marks 2 months of Labs for me. I just had a follow-up hearing test and am happy to report that there was improvement. Initially I had loss in the upper frequencies. The loss now starts at a higher frequency and where there is loss, it is less. Good news. Impossible to know if the intratympanic steroid shots helped (see posts above) or if it was just time, but I'm glad I went through with them.

I think I'm feeling a little better balance and vertigo-wise, but progress is slow. Definitely still have that "thick head" and "full ear" feeling and get off balance quite a bit. Still wouldn't want to get behind the wheel of a car!

My tinnitus is still there and is truly annoying. I'm hoping it chills out over the next few months. If not, I'll need to do something to help cope.

I've started vestibular rehab. Both my ENT and physiotherapist say to be patient and to keep at it. Both say to expect a year to regain balance.

Here's what I'm doing now:

- eating primarily fresh veggies, fruit, seeds/nuts, and meat/fish/chicken

- vestibular rehab exercises and running on an elliptical

- taking the following supplements: bromelain, ginkgo biloba, curcumin (turmeric), lipo-flavanoid, olive leaf, fish oil (omega 3s)

I hope everyone is coping.


I was diagnosed with labyrinthitis 2 months ago. I share many of the same symptoms as the rest of you. Does anyone notice that mental over stimulation (excitement, sexual intercourse, anxiety, loud noise, physical exertion) tend to make symptoms much worse? It seems as if my nervous system and brain has become super sensitive. I feel like I'm gonna faint when I get overly excited.


Hi I am also a labs sufferer and have been for 9 weeks now here is my story. I woke up 26th march and felt dizzy took couple days off work and felt ok again next week woke up with the clock on my wall moving side to side real fast managed to get up and get to work however half hour later I was driven home again had a few days off went to docs and was prescribed prochlarperizine didn't work however the next few weeks I just got on With things ( at this point I was told just viral infection) one night I woke up and couldn't move I tried so hard I managed to fall asleep then the next morning I could move but my hands / arms were all numb and hard to move. Went back to docs and said it was a virus and to go home and take paracetamol and drink lots of fluids. Things got worse from here. Basically after going to the docs for thousand time I was told I had labs. I was given cinnarizine but this made me feel worse and sleeping was awful i felt like my bed was tipped upside down and j was falling off it (although this was not the case) then put on serc but again made me worse. Now been told I have anxiety to just through in the mix. I've had so many bad days and now it's getting worse. I still work but I struggle every day and I cry everyday my boss is so understanding and helps me out whenever possible but how much can they take they must think it will be gone soon however I know it's not the case. My symptoms at the moment are - very nauseous, when I'm still j feel like I'm swaying and that I will fall over. Head feels very heavy, blocked ears and pains sometimes, when k try to sleep I feel like I'm moving and been pulled. I haven't tried any herbal remedies yet, I started craniosacral therapy this weekend but too early to say if it does anything. The only relief I get is when I am in a car or bus as the motion seems to balance me out but I can't do this all the time. I just want relief like anyone else on here. I've finally persuaded my doc to refer me to ENT but after a battle as they said I'm not a severe case and not had it long enough pffff!


Amanda, that is crazy that they say you haven't had it long enough to see an ENT. I was sent to one within 5 days. My ENT says staying off the anti-vertigo drugs (if possible) will speed up the compensation. ...also said to expect ups and downs ...and that compensation takes time (but will happen).

I've had it pretty much the same amount of time as you. Mine hit on April 1. I had a good week last week, but not-so-good this week. I'm getting used to the dizziness and balance (don't like it it though...can't wait to drive, play sports and feel normal walking down the street). It's the tinnitus that is driving me crazy.

Anxiety if definitely part of it all. I've been leaning on friends and family over the past 2 months, but with this week's low, have decided to get some professional counseling as well.

Hang in there.


Amanda,

Have you been tested for BPPV? The laying down movement thing makes me think it could be. If that's what it is there's generally a relatively quick fix.


Hello Everyone

I hope symptoms are subsiding for all of you. I have had a relapse after a stressful period & a three hour flight. I am now dizzy again, off balance etc. I also have palpatations, anxiety, moving while lying down. Have any of you had a relapse? I was diagnosed in Feb. Made a recovery in April / May & now a relapse.

Thanks Cathryn


I haven't been tested for bppv yet as I'm still trying to sort out a referral for an ENT my doctors have been useless in helping me. I asked to be refered privately said that's fine and left me in the dark for a week as to what I have to do they just now said I have to ring the other company and then they will refer me so anothe week has gone by and still at square one. My symptoms change all the time. Since I came off my antibiotics for a so called middle ear infection I don't have the heavy head feeling anymore or the nausea but i have constant brain fog, dizziness and off balance (feeling inside not when I walk) and a feeling of my left side of my body been pulled down I was looking on a website about candida it's a yeast overgrowth I. The body and a lot of the symptoms are mine I'm questioning whether I do have a problem with my inner ear as I never really suffered with vertigo I only got it for 10 mins or so at the beginning. It's hard to know what it is when I'm not getting any help via medical staff. I have had to do all the research while they are just willing for me to 'wait it out' been doing that for 10 weeks now and it's horrible. Xxx


Hi Marc, I know just what you mean about feeling over stimulated. In the early days of having vestibular problems, I felt like that a lot. Loud noises would make me jump, so would someone touching me, even when I could see them about to do it. If someone stood too close in a shop queue, the hairs would stand up on the back of my neck. Very odd. It did settle over time.


Hi Guys,

Reading through this post, I completley understand your problems and symptoms. This really is the most horrible 'non life threatening' illness around.

Mine came on after a flight back from Thailand (must have picked something up in the swimming pools out there) and has lasted for 3 months now. I had one massive vertigo episode which I put down to jet lag, so I didn't get the panicking associated with it. I went to work the next day and the disequiblrium happened again, but this time with the full blown panic attack - I went to the GP who diagnosed Labs.

Over a period of a month, I kept finding that I was having more of this disequilbrium. I would wake up in the middle of night having a massive panic attack seeing that the room was moving up and down and side to side. In the mornings I would be in haze and have crazy visuals i.e. at work my screen would come to meet my face even though I was sitting back from it. I went to my GP who then diagnose me with an inner ear infection (after looking in my ears) and gave me antibiotics and said within a week I will be ok. After a week, I was still the same although during this I tried my best to carry on as normal and not take a stemtil as I read early on this would help compensate. I didn't panic much because I thought it would be over within a few weeks.

After 6 weeks of this, I finally went private to a reputable Harley Street ENT who ran a battery of tests (MRI, ENG, VNG, Calorics, Marching on spot, Audio tests)- everything was fine except that on Marching I leant to my right and through the Calorics they found that I had a 45% caloric deficit in my right ear. The ENT diagnosed me with Vesitbular Neuritis and said give it 6 more weeks to see if you get better naturally then we will start VRT.

It went 6 weeks, with no improvement at all - in fact I feel it got worse. I then started a formal VRT programme 2 weeks ago - I had been doing some cawthone cooksey ones on my own for about 3 weeks prior to this...I still have no improvement from about 5 weeks of VRT, which is discouraging. Does anyone know how long it takes to start seeing improvement from VRT?

I feel like I am on a boat 24/7. This boat feeling is sometimes mild to very strong. I also get the feeling of being tugged side to side and get the unbalance jelly legs/marshmellow feet. Twice a week for no reason, I get a massive 'swooning' feeling which last between 5 minutes to 30 minutes which comes with a heavy head and a really stiff neck - even if I want to move my head I physically cant as its too heavy. I also get the marbles/thumping on the side of my head feeling from time to time when I lying or sitting in the evening.

I have a massive intolerance to trains and tubes -when I come off I am all over the place and stumble like a drunk. Supermarkets were a big no no, but I can now tolerate about 15 minutes before I feel I have to leave. I also get the tinnitus when I am asleep in both ears - high freqency and hear it more depending on which side I sleep on.

I have heard about good days and bad days. All I seem to be having is an okish day followed by many bad days. An okish days for me is waking up feeling dizzy but visually is ok, then getting to work without feeling drunk and stumbling, and then being able to settle at my desk within 10 minutes of sitting down. If the rest of the day comes with one or two moments of marshmellow feet and a bit of dizziness because of movement or VRT then its still ok for me.

I guess my question is here, How long did it take for most people to start having good days without any symptoms? I haven't had any at all in 3 months!!!


Does anyone know If it's safe to fly as I'm due to go on holiday in 4 weeks cancelling is a no no but I'm worried about it. I am finally off to see an ENT tomorrow privately seem as NHs didn't give a hoot about making me wait ages I've had many symptoms for 11 weeks now the worst been the off balance pulling to the left. I'm hoping for an actual diagnosis as soapy different gps cant agree on what I have. So frustrating. Hope everyone is coping ok and feelin better I know it's horrible to feel like this 24/7 hoping we all recover from it. X


hi there khal. sorry you have this to. i am on month six as was told by my ent will last between 6 and 8 months. it will not go overnight. what vrt have you been given? i went privately too and rotated to the left when marching on the spot. hearing find.did not have the tests you had as ent guy said they are not reliable. mri was ok. i have ringing in my right ear. i am dizzy on movement every day and just started vrt. it can take awhile for you to notice any improvement. doctors are useless. it is awful i know how you feel. i could not work in an office at moment. shops awful.do you make you more dizzy? about flying it is ok to fly as virus is to do with inner ear and when you fly the pressure is to do with middle ear. make sure you swallow lots on take off and landing. are you dizzy too? how did you get on at ent xx


Hi Deb,

I started VRT 3 weeks a go. I am not sure if it helping - I think the consensus is that it takes 3 months of VRT to start noticing improvement. I have been given various gaze stabilisation, different foot position with eyes open and closed, and head movements.

Being in the office is the worst. The noise and constant movement makes me bounce all day long. When I get home I am out of it literally.

Yes, movement seems to make me dizzy. I don't notice it as much when I am moving, as everything is moving anyway - its just when I sit down still I feel the swaying/rocking. Its almost like being on a plane and sometimes that plane has turbulence....then sometimes it free falls! Horrible.

I know this won't go over night, I think I am coming to terms with that.

Good luck with your VRT.


Does anyone notice that changes in lighting (i.e going from light to dark or dark to light) make their symptoms worse? For example, I live in a small one bedroom apartment that does not get great natural light. Therefore, there are dark corners and just an overall dimness. When I come in from outside the dizziness is magnified. I seem to do better when the light is consistent like outside, or when I turn many lights on in the apartment. I also notice that smaller rooms that have a lot of visual stimulation (walls, corners, clutter) cause me problems, while wide open spaces seem to be better. Thank you for your help.


Man.. my heart goes out to all of you going through the same thing. It was almost exactly 6 months ago, I head sudden vertigo attacks, as my labs started. Off and on, for the last 6 months I've had symptoms. While I don't have vertigo episodes anymore, I still have the following which seem to be less severe each time:

- general dizzyness - spaced out - left arm sometimes feels detached - stiff neck - pins and prickles on arms and legs - muscles twitching - an amazing amount of anxiety

I'm 31, with no history of illness at all, and in very good shape. Before I had this, I felt very healthy and no anxiety. Now.. everytime I get a symptom my anxiety goes through the roof worrying that I have a new disease. I've found that anxiety is actually the biggest culprit in all this, as it causes the symptoms to worsen. At this stage I'm about 95% back to normal. I've found that the following helped: (these helped me.. so I cannot be sure it works for everyone)

- Exercise! This also acts like VRT in a way - Eat healthy. I've found that processed foods made my symptoms way worse - You MUST get rid of the anxiety! I took St Johns Worts, and continually put positive thoughts in my head. Exercise will also help this. - I took these supplements: B-Complex (neuro functions), Magnesium (muscle twitching), Vit. C (immune system) - Stop looking things up online, except maybe reading this forum. This will make your anxiety worse. Our symptoms also belong to some neuro diseases out there so there's no need to worry yourself so much.

Again I'm no doc, this only worked for me. I still have subtle symptoms after 6 months, so for you guys just starting out, don't be surprised if it lasts this long. I've heard usually 4-6 months for most people.


Amir, this is the worst experience of my life. I've had this disease for nearly 6 months and I'm only 25% improved. I was convinced I was dying. All of the advice you gave is very good advice. When dealing with labs the bottom line is to avoid known triggers(caffeine, computer screens, lack of sleep,etc.) and do VRT.

Good luck to anyone that is going through the hell on earth known as LABS.


Amir - thank you for your comments. I've been reading this post because my husband was diagnosed with Acute Labrythitis exactly three weeks ago. He is improving and is back to driving himself to work with the use of 2.5mg of Valium now twice a day instead of the origin 3x a day.He has regained his vision (he was seeing double, triple, and lost his periphereal vision), has occasional dizziness but nothing that is debilitating like the original onset. I like your comments about being positive. Interesting that on the national news just yesterday was an article about PTSD - Post Traumatic Stress Disorder - as a result of heart disease/attacks. The constant worry results in the PTSD and they even concluded that just taking your daily medication was another trigger event for it. So, the positive focus rather than self fulfilling prophecy is key when you are healing. I know what you mean about looking things up online. My husband may not have but I sure have. As you can see, this affects family members too.


:(( Well what can I say 3 months in labyrinthitis is slowly ruining my life I don't feel I'm the same person everyday is a struggle I hate waking up every morning not knowing how dizzy I'm going 2 b for the day can't wait for each day 2 b over finding it hard 2 hold my job down not sure how long I can keep going may have to go back home 2 live with my mum been so poorly at times waiting for an appointment 2 c ent I've also had twitching nerves some of u have mentioned and my body hurts all over at times has any1 else had this doctors say its anxiety my heart go's out 2 u all that's suffering this awfull illness I feel people that havent had this really dont understand just how ill u really feel as it's an invisible illness very sad at this time feels like a long road ahead of me will I ever feel normal again what I wouldnt give 2 feel well again the only good thing I lost a stone in weight being ill


Amanda who is now pregnant I have a couple of questions for you..in September its my three year anniversary with labs...and I'm thinking of starting a family also....can u email me at lianadeleon0302@gmail.com


Hi everyone, I want you all to know that you will get better. I was diagnosed with vestibular neuritis last summer after being hit by a sudden attack of dizziness. The first 7 months were horrific, it felt like torture, I could hardly speak to people as their faces seemed to shift infront of my eyes, I couldn't look after my children, I couldn't get round a supermarket or cope with any places with a lot of patterns/visuals/people. I felt dizzy 24/7 and everything looked surreal. I had muscle twitching, shooting pains and terrible headaches. I thought my life had ended. I was also diagnosed with migraine triggered by the VN. At around the 7 month mark I started to slowly improve, I definitely noticed an improvement after doing vrt exercises for 8 weeks consistently. After suffering for 11 months I am now almost better. I still have dull headaches and occasional dizziness but just no where near as bad as a few months ago. Nearly every person who has visited this site has recovered so please do not think this is a life sentence, all of you will come out of this. I was told by a neurologist that she has seen at least 100 patients with this condition and everyone has got better but it can take ages. The most important thing is to do everything you can to minimize stress, get as much support as possible from friends and family, get a good nights sleep, eat healthily and do regular light exercise. This is a horrendous illness but you will improve even if you don't feel like it now. Good luck to all of you x


Hey everyone! It has been a pretty long time since I have posted, my last post was in February I do believe! A little update, I felt better from February until now.. I would say About 80% better, slight imbalance and swaying but not to bad, and that was fine, much happier with the minor symptoms, because they are easily ignorable. I'm having a bit of a setback unfortunately, I feel like it is only my fault though, wit