Sharp Blue: Labyrinthitis comments, page 5

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Once again, I must say that I am amazed by the way a community has formed around my labyrinthitis post! Here’s a fifth pages for comments.

Thanks Anna for you responce. I really appreciate all you support knowing that you have been through this various times. I can't image.

Chad you WILL get better, we will ALL get better. I sometimes think it's horrible when I have a bad day, but then I remember how I felt when this all started and remember that I am doing much better even having a bad day. I almost have to look at each week and think of how I was doing the week prior compared to how I am now. Or even last month and that's when I realize that I am making progress, it's just slow. My ENT told me that you will have good and bad days. Don't give up Chad when you've already came this far. Have you tried therapy to get your balance back on track. I've heard that it can work??

Good Luck Lauren. I hope you find answers that your looking for at the Mayo Clinic. You'll have to let everyone know what they say. Have you had a lot of test ran?? Just courious to see what different doctors do. I immediatley had an MRI done when my tingling started and I'm glad I did. It was negative, and saved a lot of stress.

Does anyone experience muscle soreness. I mostly do in my arms, neck, back and sometimes legs. It drives me crazy. It comes and goes.

Hope everyone is doing well and always stay positive. ---


Hi to everyone.

I have had labs for over 3 months now. Symptoms now bearable and at times absent. Stil feel slightly lightheaded, mild dizziness and nausea at certain times of the day. I fid that stress, tiredness and alcohol can all make symptoms worse.

Two questions:

Had a weird experience of very briefly (for a few seconds) of losing hearing in one ear. this happened a few times over the course of about 20 mins then went away again - anyone else had this?

Is it OK to fly - I am due to go to Spain for a day on business soon and am worried that this will bring on an attack.

Best wishes to you all - it does get better with time - honest!


Question::!!

What are everyones bad days like??

Do you just all stay home & sit it out?

Are bad days just real dizzy or just real tired?

And how often a week?

It would just be great to share for everyone here!

Thanks!

Mine are 2-3 days a week that are "bad"

My bad days are just a real lack of energy so i wake up feeling tired even though i have had a good nites sleep.

Please share yours!

deee xxx


hi everyone, i am from Bradford, in the U.K and have had viral labs for 6 months. it started a few days after my 20th birthday in may and life hasnt been the same since!! it started when i fainted at university, i hit my head quite badly, and doctors think that this may have caused this virus. i also began losing a lot of weight so was addmitted to hospital for 1 week in july. finally i now feel i may be in the final stages of this horrible illness. i started the vestibular exerises ( physiotherapy for the inner ear !!) a few days ago, and i really would recommend them. my main problem is 'my eyes not coordinating with my brain' so i do eye exercises. in response to deee,on my bad days i feel even more dizzy than usual, and really exausted, so i do just sit them out! all you can do! i also feel a lot of panic and anxiety when dizziness is bad. justine, i asked my vestibular therapy doctor about flying on my last appointment, and she didnt seem to think it would be a problem. apparently labs is behind the part that deals with the pressure so shouldnt effect it. but please dont take just my word for this!! hope to hear from people soon Hollie xxxx


Hi Deee

My bad days go along with headaches and off balance. I'm due for an ENG tomorrow. I had 5 really good days and then it came back. I get really bad eye strain when I get headaches. Does anyone else experience this. It's so irritating. Hope everyone is doing well. Take care.


Hello everyone - I just got done having a ENG. Well my results came back normal. Abnormal results are 20 and mine were 17. The audiologist said this might be due to me doing so well. I still feel off at times though. Can anyone give me insight on this and if there ENG test came back normal what there doctors did next. That would be of great help!!! Thanks

Michelle


I posted to this site back on page one and possibly page 3 or 4 too, but anyway...

I got Labyrinthitis on Oct. 8th 2004 It scared the @%$# out of me! I just woke up that morning and couldn't tell which way was up or down except that when I realized I couldn't walk and fell it was to the floor and not the ceiling.

So it's been a little over a year now. I found a doctor I trust and that was sympathetic and understanding (rare!). He told me, and this was verified by a doctor friend of mine who also had Labs many years earlier, that Labyrinthitis lasts about 8 to 10 weeks. My doctor explained that the symptoms that I was experiencing after that were classic symptoms of Anxiety Disorder or Panic Attack. This is not unreasonable considering what you go through with the dizziness and all and possibly the virus causes this as well.

Since many illnesses can cause dizziness and since there is only a clinical diagnosis for Labs it's important to rule out all other causes, so I had CT scans, MRI, refered to a neurologist for more test, etc. etc. They ruled out everything else. So...

My doctor put on Effexor in February and 4 weeks later I was back at work and have not missed a day since. I am running again, I can drive my car again, I'm riding my bike, and just plain enjoying life, I can even fly in an airplane again. In August I started training for my first marathon next May at age 51.

Keep up your spirits, set goals, this WILL pass.

Find a doctor you trust and are comfortable with and ask him/her to diagnose you for depression/anxiety. It may be that, like me, it's what will help.

Good luck all, and thanks for all the support in the past. And thanks Rich for keeping this BLOG going.

Bruno


Hey hollie,

I have also had this for 6 months now, and same as you, i also just sit out the bad days..!

are u studying or something at the moment? or already working at 20?

I do feel that this passes slowly ,,on good days i can get out and feel almost normal, although i dont have as much energy as others, i think this will to pass..

deee


hi deee, i had to give up my uni course, only had 1 year left !! very frustrating, although i can continue next year if i want. i did work part time aswell which i also had to stop, but they are holding my job for me, so hope to gradually get back in to it very very soon!! i find it unbelievable that people can work throgh this!they must be very brave. im only just getting use to being able to walk again!!

what do you do? are you able to socialise, or does it scare you to death like me?!

im getting to the point now where i can go out and feel ok, and also see friends again, in quiet enviroments! i find that keeping your mind busy helps alot. i think this will pass, but as you say, it will be slow. you just have to stay positve and accept that some things happen for a reason . . . .! we will all come through this better and stronger people than we were. x X x X


Hey Hollie :)

Yeah i can get out & socialise - but very chilled stuff! -

I go to friends houses or movies or dinners but nothing major and i cant do it all in one day!

i find if i have a lot to do or real busy then the dizzyness comes again..

i have been very chilled & working from home doing web design, so i dont often get busy,

but sometimes when i have a lot to organise and a lot of errands to run & if i get worked up a bit trying to get everything done at work & at home - then the dizzyness comes up..!!

What u studying at uni? think you will go back next year?

going back to the office scares me to death though! a lot of anxiety associated with this!

deee xxxx


hey deee, dont know wheather ill go back to uni or not, i was doing special effect and fashion makeup artistry, so dont really need the qualification to go out and work.

seriously getting fed up with this now though!! i am just doing my vestibular exercises all the time, and have been told that i should see some major improvements within the next few weeeks, (in time for christmas!!) im staying hopeful!!

yeah, the anxiety is a real pain, i just hate the light headed feeling!i always think i am about to pass out!

i havent travelled anywhere too far from home yet, i am building up my confidence, as it takes 1 hour to get to work by bus, and i need to get back as i am missing my staff discount!!! ( i work in a fashionable clothes shop!!)

Hollie xx


Hollie --

well i am seeing a neuro-otologist in jan, so maybe he can give me exercises then!

Its on the NHS (im in london) so it took ages to get a referral..

go on other bus trips - maybe not to work but elsewhere! so that by the time you go back to work, then youll have those bus trips done & dusted!!

its a lot about confidence and comfort zone..

ie - im not anxious at home becoz i know its my comfort zone here, in the beginning just going to the corner store was a big thing!

Now, i go to the shops for an hour almost everyday just to walk there & back, get basics etc and just to get out..

Its tough to start, but soon these things fall into your comfort zone as you get used to doing them..

Going to the cinema - its in my comfort zone now as im over the anxiety of it - took me a while though! ive been more than 10 times since ive had labs and the first time i thought i was going to pass out!

Bad days though - i cant really do anything!!

dont worry, i get fed up with this too! we all have the days where it just really gets to us..credit to us though to have the strength and courage to dust ourselves off and try again!

Hollie - you online through msn? send me a mail at beyondf@hotmail.com (just a made-up, junk email box) and i can reply with my MSN details if you are!

deeee xxxx


Hi

Had this for 4 months.About planes-Just been one.On the way out I felt a bit bad when i arrived for a few days, but on the way back i was fine, just a little of balance when i was in the terminal.I can't wait to feel completly normal....but i think it is coming with time.Just gets me down when you think you are getting better, but then you take a dive!!

Not sure about vestibular rehab...i heard it only works if it makes you feel dizzy.I just go to the gym and stuff.

Really want to be rid of this by xmas-going snowboarding

Deus


Hi everyone! Well I just got back from the Mayo clinic in Scottsdale, AZ. I wish that I had the magic cure for everyone..b/c that's what I was hoping...but I really just found out what I already knew. They make you go to just a general doc at first to talk to her about your symptoms and then she refers you for certain tests and the docs that you need to see. I had a bunch of tests (some of which I already had....not happy about that) and saw an Otorhinolaryngology doc which is Otology and Neurotology (complicated sounding I know)....but he said that he sees lots of cases like mine...and he thinks that I have/or had vestibular neuritis and that it is was a virus that has probably gone and I am now left w/some ear damage. I feel better than when it first started b/c my body healed itself up to a point and then it plateaued and now I am stuck w/ having to get over this last hump....by doing VRT excercies and getting out and doing normal activities as much as possible....he gave me valium...the lowest does that you can have 2 mg to get me over that anxiety feelings when I try and get out and go to stores and stuff...by far my biggest prob. He also said most importantly to get both a psychitrist and and psychologist to get over all of the anxiety and how much it has changed my life...and I really could use someone to talk to as my friends, boyfriend and parents just have no clue...and are tired of hearing about it. I really hope that I can get back to my normal self...that's all that I want...I know that it will take time...I just want to see the light at the end of the tunnel so I know that I have something to strive for. Thank you all so much for your support....it has helped me tremendously. Oh....I also saw a neurologist...and eveythings fine in that aspect. I have had this for about 7 months now....main prob is the ringing in ears....does anyone else have this? This kinda worries me the most....I can only tell when it is quiet though. and I hate waking up every morning feeling like my head has been hit w/ a bat.


hi its hollie, havent looked on this site for a few days the VTR exercises are bringing back all the horrible symptoms, so not feeling great!! i was warned they would, but i really had forgotton how bad they make you feel. deee, im like you, i also go to local supermarket almost every day,i think the staff are starting to recognise me now . . . . its getting a little embarassing!!! i understand the whole comfort zone thing too,once you have done something once, it just gets easier and easier.

lauren, i very rarely get ringing in my ears, and its just for a few seconds, it must be awful to have it as much as you do. did you feel worse with the VRT? i am also waiting to see a councilor( or clinical psychologist!) my neurologist referred me as he thought my entire problem was psychological! he was arrogant and refused to believe i had labs! like id make it up! its a good job my ENT are looking after me.

one more thing, does anybody else feel like they have got really bad hangover on a morning?! Hollie xxxx


tell me about it everyone 10 months for me now, everyone is sick of hearing about it but i always have lightheaded feeling and get tired and cant go out like 2 nights in a row without being tired....i hope its coming to a end sometime here 10 months im really honestly thinking it is never going to cure 100 percent....and its a horrible feeling..........


u know the worst part is i had this before once for 4 days the other time it lasted like 12 days......i guess my ear is damaged more this time...i remember feeling horrible but waking up one morning and being fine ........now its been 10 months and i am hoping for that one day this dissappears......


Hollie- the ringing in the ears only started happening like a month ago....I can only hear it when it is quiet...so going to bed at night and lying in bed in the morning is when it bothers me....I hope that it goes away...even though I have heard that it doesn't usually. Every monring even though I am getting tons of sleep...I feel awful in the morning...like my head is heavy. hate it. VRT does make me feel bad and gives me a raging headache. I also saw this ear doc right before I left for the Mayo...he is supposed to be the top rated one in Dallas...and a lond wait list to see him. He came in and never even looked me in the eye.....and never let me say barely anything and said it was anxiety and walked out. What a jerk....I have never been so angry in my life.

Chad- Will your doc prescribe you dizapan? I think that it gets rid of that spacey head feeling.....but don't take it all the time so your ear can readjust on it's own too.

I just really feel for eveyone on this site....this has been the toughest thing that I have dealt w/ever....and probably ever will. The ear doc at the Mayo said that this is about one of the worst things that you can get....just b/c it is such a nussiance.


Lauren - thank you for the information on your visit to Mayo Clinic. That's pretty much what I expected.... I gave to read your message to my husband. He is a great guy and he loves me and cares about me a lot, but he still has funny illusions about "the power" of contemporary medical science... Lauren and everybody - TIME will do the job of our natural healing.

Anna


Hi, This is my first posting on this site. I am from a small town in Canada and have had an inner ear disorder since my nine year old son was a baby. It usually only flared up around allergy season - Fall and Spring and would diminish with the use of Sudafed. This year it has flared up after a bronchial infection and has lasted for 6 weeks so far. I think the worst is over but am now very depressed. Does anyone know if this depression is symptomatic of this disorder and if it clears over time? I also still feel real uncomfortable in fluorescent lighted stores - Walmart being one of the worst. Is this common of this disorder as well? I have found comfort in the postings on this site, as people think I look fine but feel terrible inside. It is nice to know that there are others like me!


Patti-Jo sorry, that you are having it. Yes - depression, anxiety and panics ARE SYMPTOMATIC to any inner ear disorder. The longer the disorder lasts and the more severe it is - the more probability of getting depression, anxiety and panic. I would encourage everybody with an inner ear disorder to take anti-depressant drugs. Actually, any type is good if it does not give you side effects. You will only benefit from them - you will sleep better, feel less tired, calmer, have less headaches, and finally - be less dizzy!!! At different points of my illness I really benefited from: amitriptiline (in 1995 - for half a year) and paxil (started in 2004 still taking it).

Bruno earlier wrote on this site: "Find a doctor you trust and are comfortable with and ask him/her to diagnose you for depression/anxiety. It may be that, like me, it's what will help." Bruno benefited from Effexor. (BRUNO - THANKS FOR COMING BACK AND POSTING THE SUCCESS STORY!)

Earlier in my life when I had a relapse of this illness I was really reluctant to admit, that I am worried, anxious, depressed or panicing. It was my "false pride" and stupidity. Nothing to be ashamed of!!!! With the whole bunch of horrifying symptoms, that we all have here - the bravest and the strongest creature in the Universe would be scared to death!

Hugs, Anna


hey guys

Havent got much to add, but keep going everyone,,it will get easier over time..

This time next year i hope we can all look back at the recovery we made

deee xx


what is dizapan???????....does it really take away the spacey head feeling....


i hear of all this anxiety also...i get real bad anxiety when i do something real active my heart starts beating real fast and then the axiety kicks in...i guess from our bodies being so tired....


Hello All

Just saw my GP again as still haven't completly shaken this after 4 months.It started to make me anxious and feel sick, which makes the dizziness worse.Its really started to drive me up the wall.

The fact is all this VRT etc, unless you have BBPV, doesnt necessarily make you 100% recovered (sorry to upset people who have faith in it, anything is worth a try)

I have been advised to have cognitive therapy to learn to deal with it while i have it.Apparently it can be so helpful that you begin not to notice it.Hopefully this well help me, as i have reached the lightheaded, slightly off balance feeling (simliair to chad) period of vestibular neuronitis.I have never had Vertigo, tinitus or inability to walk that is characteristic of Acute labrynthitis.Neuronitis is irritating as it seems to be the one that always lingers the longest and is hardest to cure.It is just a constant irritation feeling spaced and off balance.

The worst is when you get off a train and u feel like you are still moving!!Thats when i really notice it.

However I am still holding my job down, have mates, girlfriend etc and know i will be stronger when i get through this.It is the first time i have been ill (apart from flu) hence making it harder to deal with.I am trying to lead as normal life as possible, going out etc and socialising.I will not let this control me any longer.

Most people on this blog seem to have recovered in the past so i have no doubt in my mind i will do.I always remember this is not life threatning and there are people much worse off.

After 4 months of punishment i really feel for you all, and in some cases consider myself fortunate, as i have read some of you cant walk far, cant work , cant drive.

Deus


I don't really beleive in taking medicine....but after this crap, anything is worth a try to me. Diazepam is valium and it had been the only thing that will make me feel pretty normal again....taking away that spaciness feeling. I try not to take it unless I am going to do something that gives me high anxiety. I have yet to try and get out and do some social activites w/ friends lately...I guess mainly b/c a lot of the activities center around going to see bands and a lot of my friends are in bands and I am afraid it will hurt my ears.


dues...its good to hear from u...so u are in my boat...u never had true vertigo u just have lightheadness for like 4 months??????? mine has been 10 months ive been tested my right ear is pretty damaged but they said it will cure it could take a long time....somedays i feel like its almost gone ill go on the treadmill or something and other days like this week for example i feel really lightheaded like spacey feeling......keep in touch.....at least u know your not the only one going through it....


Hello everyone!!!! I posted about three weeks ago and in that time my balance seems to be returning, just not completely. I went to the ENT to day for a hearing test and the doctor said I had negative pressure in my left ear, nothing to worry about so he says. The doctor said whatever I had i'm on the tail end of it which has giving me hope that the feeling will go away soon. For me, somedays are better that others but I decided not to let this control me. When I feel dizzy I just keep pushing no matter how bad it feels. I feel that if the vertigo is going to happen its going to happen no matter where i'm at. I don't know how to describe my dizziness, but some how it is different from a few weeks ago. before it was as if the ground is moving now the feeling is just in my head. Anyway, I feel about 85% on the days most and about 75% on bad days. The only thing that is really bothering is my sleep, which has gotten better. I use to wake up every hour on the hour, but now i wake up every 4hrs then go back to sleep and wake up 2 or 3 hrs later. Hopefully I will be able to get a full 7-8hrs of rest like I use to get before this infection. The only advice I can give to people is that get outside of your comfort zone as much as possible. I was uncomfortable taking the train to school so I decided to just do it. I voluntarily(spell check) go to grocery stores. It may sound weird but I try to trigger dizziness so I can get over it faster. It's going the six month this Dec and things are looking up. All I can say is keep your heads better days are coming.


Hi, I was wondering if anyone has experienced morning jitters with this? It is almost like my blood sugar is low but is really not. Some mornings are worse than others. Is this a symptom of inner ear or not? Answers would be much appreciated.


corey read me and dues last paragraphs do u feel like that?????


Lauren and everybody - try to use Bose noise-cancelling earphones when going to noisy places like big supermarkets, or listening to bands. I have been using them for more, than a year and a half before I started feeling better. When I was tortured by sounds, they actually saved my life -they worth $300 that they cost. I tried other, cheaper brand names who also claim, that they are noise-cancelling, but nothing were good. Bose earphones are REALLY good and comforting. You can use them later when you will recover from labs (WE ALL WILL RECOVER- JUST KEEP PATIENCE!!!), for example during airplane trips.

Anna


The thing that really agrviates me is not being able to "clear" my head. It feels heavy and stuffed up all the time. Has anyone ever tried Sudafed or Clartin for these symptoms? It seems so simple but I haven't tried them. I always get positive like things are going to be okay during the day and at night things get so much worse and I end up in tears. This is a very frustrating illness. I feel so ready to heal...but my body just won't.


Lauren, I am a believer of Sudafed to clear the head. When I experienced similar symptoms a few years ago, the thing that got me through was Sudafed. It won't hurt to try!


Hello - I have been dealing with this for 4 months now. I was doing really good and then last week it hit me. I haven't been this bad for awhile. I'll have an OK day and a few bad. My ENT put me on steroids thinking maybe that would help. I don't believe it did. My next step he said we could do is vestibular rehab. But he stongly encouraged me to give it more time. I just get very impatient. I've also been getting muscle twitches in my body. Has anyone else experienced this. It drives me crazy. Hope everyone takes care.


I was looking at the allergy website....and a lot of the sypmtoms are similar to what we feel w/ the inner ear prob. OTC Chlor-trimenton was mentioned as being helpful. Has anyone tried this? I am going to ask my Ear doc at my next appt.


4 months and it still hasn't gone.In fact I took a bit of a dive this week and the dizziness has got worse after I had a stomach bug!!

Now taking time of work as i cannot handle feeling weird 24/7 in my office-too stressful. Hopefully a more relaxed approach will speed up recovery.

Sometimes I think this will never go.But it has too as everyone who has posted on previous pages seem to have recovered.

This has to be the most irritating thing ever!!Argghh!

Deus


Update on my situation - I am feeling a whole lot BETTER, than a year ago - still not NORMAL, though. Still cannot work and applying for a long term disability. 25-th month of the 5 th bout of the inner ear disorder. I agree with Deus completely - "a more relaxed approach speeds up recovery". Slow down, rest more - DO NOT PUSH YOURSELVES OVER THE EDGE! You will get your life back only with time and patience.

Hugs, Anna


hi eveyone, im four months into savere lab, woke up one morning and bang total disorientation, done the ENT clinic and told it was all in my head but when he found out i was a mental health nurse he soon changed his attitude, i paid to go private for ENT and got my diagnosis, he refurred me to physio this is my third week in on physio and i am seeing slight improvment, however i must say that the last four months of continual vertigo, sickness, vomiting room ect ect have been hell, i am now at the point where i have stopped taking vertigo, sickness medication and letting my body do some healing from all the medication changes they pumped into me, i to have anxiety due to the labs so the only med ication i am taking is 20mg fluoxatine, as a MH nurse i think short term antidepressents are fine and help you get over a very bad stage in your life, but you have to find the right one for you, i also get very tiered as most of us fighting labs do, coming up to my fith months i am slowly getting about but can not tolerate crouds or loud places, this is an terrible illness but if we stay possitive, dont push our selfs to much, and do the excercises we will hopfully get back to our selfs again. Casey


It is weird.I feel completly bad one day and today I feel like 85%.I wish it wasn't so up and down.I'm fed up of getting my hopes up and then it goes bad again.It drives me mad.I must get rid of this and never get in again.I want me back!!!

As they say in Russia-Vsyor peremeletsya, muka budet!!

Deus


MICHELLE i agree with u completely i get body twitching alot i have for months..parts of my body twitch or my legs will shake after walking etc.....it sucks...... 10 months for me.....this sickness sucks...


anna 25th month that is along time....have u had the spacey head feeling for 25 months straight????


Went to see a psychitrist this morning.....not very helpful and she was hard to talk to....I wish that there was a therapist that dealt w/ just inner ear disorders. Anyways....the good news is that I drove there! I haven't driven in a looong time. Felt a little shakey...but it felt so good to do it. I think that we all just need to keep pushing ourselves to keep getting out there and soon enough it will be gone. Trying to stay positive! My ear disorder is so weird though b/c it never started w/ a sickness or violent spinning attack or nasuea....it just kind of hit me and hasn't changed since. Just dizzy feeling spacey head...hard to drive and go into stores. Don't get it.....?


At the end of it - -- It seems like it almost takes as long to get over the fatigue and anxiety than it does the actual illness!

I mean, im guessing i am near the end..

My fatigue is still a big issue..and i cant do a full day of stuff..

But i can go to movies in the evenings or friends houses or dinners ..i still feel off and tired but 80% of the time i do these things i feel ok!

The anxiety as well, i feel that if I am surrounded by friends, then i forget about it for a while and thats when its better..

I went to paris for a long weekend on a coach tour - 9 hours on coach from london with mates - we stayed in a hotel 2 nights and went to see Eiffel Tower etc and watched a rugby game at the Stadium,, and i can say for the most part i was ok!

Shopping malls in Paris still got to me a bit and i was more tired than others..but i feel that there is less anxiety around my friends as they know what i have and i dont need to pretend to feel ok.. therefore i just get on with whatevers happening around me without the worries and then i do feel ok!

The anxiety about getting back in the office where i first fell ill is quite bad though!

not sure when i will make it back full time!!

Ive had this 7 months now and yes, 3 months ago there was no way i could even consider doing a long weekend in paris.!

So, theres a bit of encouragement for all! And, I am not dizzy 24/7 or have that lightheadedness 24/7 -- only really when i am out and about..

deeee


im so glad im not the only one getting anxiety from lab i was really beginning to think i was going round the bend, i to can not stand to go shopping the loud noices, lights ect make my symptoms worse, had a good day yesterday but today full of the shakes and feeling sick on and off, im dreding xmas, ive said to tony my husband we will have to do it all at tescos late at night in the hope that it is quite anyone else dreding xmas, ive got kids so hopfully im going to have more good days than bad, well done lauren on driving, i miss that but hopfully i wil have some good days to get back in the driving seat, my family are full of colds and im dreding catching the slightist bug just in case it starts a full blown attack of vertigo again yuk anyone else feel like this? xx Casey


Dee that is so wonderful for you!!!! I have had this about as long as you....during the day I will start to think that I am getting better....but by nightime it is really hard. Went shopping in Walmart last night w/my fiancee. Hardest thing that i have done in a looong time...but I made myself get through it. May dad really seems to think that I just have anxiety and I am just scared of places and doing things from when my ear virus first hit....but now that it has gone away...I still have those same frightened feelings..but it is all in my mind. Does this make sense? I want that to be the case.....but all I can say is that the way is feels is so real and awful that I just can't explain it. I know that the mind can really fool you sometimes though. Anyways my dad is going to get me a pscyholgist and psychitrist to work together w/ me to see what we can figure out....hopefully this will help me.

I am kind of down about Christmas too this year Casey....just isn't quite as jolly w/ this ear thing. boo to that!


Hi Chad - I hate the twitches. They're really annoying. My neurologist perscribed my some anti-seizure medication to help with it. I haven't started it yet, but I'll let you know what it is and how it's working for me. I hope that you can recover soon as well as all of us. Take care all. Michelle


when i refer to the lightheadness there is like a depth perception problem with it like not only does my head feel spacey but like things seem alittle further away its weird......but yes when i with my friends dee and im not thinking of it i dont notice it but it still is always there 24/7 spacey head feeling and my legs are weak alot and when i drink the next day is horrible im like double week to the following day....


Chad - those 25th months were ALL DIFFERENT - spacey feeling was just one of the symptoms (and not the worst!) Now, I am very tired and my head very heavy, and I am often not quite steady in the END of the day. I feel much better, if I just lie down in full silence for 15-20 minutes with my eys closed. I ask my family not to disturb me during those RELAXATION TIMES. there can be up to 5-8 times a day of those rests. My body just NEEDS those rests, so I am very insistent in my request "DO NOT DISTURB"

Anna


Is complete recovery ever possible or will I always get bouts of this during my life?If so I am having my damaged ear removed.I would rather be deaf!!

Just can't shake the spacey feeling and can't focus my eyes properly.

Deus


Anna, I can relate to the Do Not Disturb moments. I cannot lie down but I sit very still with my feet elevated and I reconnect with the person I once was. I feel almost normal. But the second I move, all the awful symptoms return. I am entering my fifth month of labs and do not see any major improvement. I am seeing a naturopath tomorrow who feels that if he can get my body healthy, it will heal itself. I hope he is correct. I need to get well. My company rejected my medical disability stating that this is not a debilitating disease. I said I would never wish this on my worst enemy but..hmmm..having it is sometimes the only way anyone would know it for the beast that it is. So many people have no idea the torture we endure. I am so happy that I found this website because I read the stories and know that there is someone else who knows what I am going through. It can be a very lonely road when faced with people who are not familiar with it. Wishing everyone a speedy recovery.

Xianna


Hi, guys

Deus - of course, complete recovery is possible. It is for the first time, that it is happening to most of you, guys. And for most of you it will be the ONLY ONE experience in your life. That what statistics shows (I made a lot of research on medical literature and talked personally and through the Internet to many real people with this problem). Casey - I liked that part of your first message "done the ENT clinic and told it was all in my head but when he found out i was a mental health nurse he soon changed his attitude"! It made me giggle. So many times in my life and struggle with dizziness (actually, 33 years out of my 54), I was said: "Everything is in your head@, or "It is all phychological". In recent years, each time I go to any type of doctors for dizziness problem, I take a whole bag full books and binders with scientific articles (my research on the problem), all my numerous test results (thick binder). I also tell doctors, that I have a PhD degree in Materials Science. So, in other words, I warn doctors from the beginning - DO NOT MAKE ME AN IDIOT - I KNOW VERY WELL - IT IS REAL!!!! So, we get straight to the point.

Everybody - Sometimes, I even think I should disappear from this website, because, my example of dealing with recurrent bouts of the inner ear disorder can be scary. At the same time I think, that some of my advices and experinces might be helpful and somewhat encouraging (remember - I was just perfectly NORMAL, VERY ACTIVE AND PRODUCTIVE in between the bouts!)

Anna


dues u will recover comletely but from this bout....it happened to me 3 times in my life by it will come back again later in life.....it may not last that long next time.....


Anna, Your well-considered advice and kindly encouragement is always apreciated. You may have helped some newly stricken folks without any prior experience of this condition avoid some pretty drastic and sometimes useless medical intervention. Your wise/caring advice would be missed greatly if it was ever withdrawn.

I've not had any recurent vertigo since the summer but still feeling a bit off balance. I find keeping my head warm helps me a lot and I'm doing just that in sunny Mexico for the winter. By the way, are you still taking ginkgo and what's your assessment?

Also, I've recently discovered GSE ( grapefruit seed extract ) and found it to be fantastic for ear infections!! -mine and others. Has anyone had any experience with it? .........it probably has no effect on the middle or inner ear but as a strong anti-bacterial agent with NO side-effects it sure seems to clear up painful outer ear infections in a hurry. Anyway, thought you for one might be interested Anna.............

Kind Regards, Tom


For those of you who said that this has come and gone.....how do you know when it is gone? Do you suddenly wake up and you feel that your head has cleared...or you go in a store and it isn't spinning anymore? I feel like I am developing more and more symptoms the longer I have this.....like when I first developed this I kept on excercising and driving and even kept going to the grocery store and stuff. Now I can't walk the dog w/out feeling like I am going to faint....my ears make a buzzing sound and I can not drive or go in stores. How much of this is anxiety and how much of my ear prob is this? I go in a store and it is spinning....now that just can't be anxiety can it? Anyways....just frustrated. I feel sometimes like this is going....and then I try and do something normal and end up in tears. So frustrating....I am ready to start my life again and Christmas shop at the mall like everyone else. Hope everyone is doing okay!!!


Lauren

You problem seems largely to do with anxiety.Anxiety and psycological fear increase the symptoms of labs enormosly.Believe me I have seen one of the top psyciatrists in the UK and he knows his stuff.Mine has improved since i conquered my fear and anxiety.I am now just left with a spacey head which is better some days.I believe the hardest bit (4 months is over) and mine will now gradually dissapate with time.

All i can say is that after a month i got rid of this completly just by waking up one day but it came back 10 days later and have had it ever since,However my situation has improved and most sufferers say it gradually dissapates until you forget about it.

I really wouldn't worry this will go.Just ride out as by trying to conquer your fear.

Remember your labs may have even gone, but the psycological symptoms may still be there.

Force yourself into situations,beat anxiety and get your life back.

DONT LET THIS DEFEAT YOU.ONLY YOU CAN BEAT IT.

Deus


Tom - Following a book , other people's and your advice, I have been taking Ginkgo Biloba regularly - 4 x 8 mg tablets per day for half a year at least. I am still extremely slowly improving. I have never heard of Grapefruit Seed Extract - thank you for the information - will try to find something about it.

Xianna - when you go to a doctor who fill out a disability form - DO NOT DIMINISH your sufferings! In fact - say "terribly dizzy, spinning and vomiting most of the time, CANNOT drive, work on computer, be among people, in constant EXCRUCIATING headache, etc., have constant brain fog and cognitive problems". Ask somebody to bring you to the doctor's office, cry, hold your head with both hands, wobble while walking, etc. Do not feel guilty, that you exagerate (you don't, in fact!). All you need from some doctors is a LEGAL PAPER that says TOTALLY DISABLED (WITH A POSSIBILITY OF IMPROVEMENT).

Anna


Hi

I think I am gradually shaking this thing after 4 and 1/2 months.I just have mild spacey feeling and have a little trouble focusing with my sight,cant quite focus properly.

However for those of you who have recovered, how do you know when it is coming to an end.Do you start to have dizzy free days or does the spacey feeling gradually dissapear.I do almost everything, drive , go to gym , be in noisy places and am ok.

I kinda feel like if someone knocked me on the head my state would be altered.I have had periods like this for a while but just can shift the weird spacey feeling.

Any comments or advice apperciated.

I feel like im close but kinda feel it will be atleast 6/7 months till i leave this level of labs.

Deus


Thank you Deus.....I really needed that pep talk. I hope that most of it is anxiety now....that I think that I can get over. I am supposed to get a psychitrist and psycholgist soon.....I can't wait to have someone to talk to about how disabiling this has been and how it has affected my life. My family and friends are sick of hearing about it. I just want this dizziness to go away.....I daydream about stuff I was doing this time last year like skiing! Hopefully it will all be gone soon enough. I am going to a friends party on Wednesday....haven't done anything social in months. Scared but I am going to do it.


well deus ive just had that feeling for about 5 months and it wont kick yet...i went out drinking saturday night felt fine then sunday and today feel like crap, head more spacey than usual........but ill be fine again tommorrow


Oh great! Cant wait for the next 5 months!Have you not improved at all!!!???

Very depressing thought

Deus


Anna, Thank you so much for the advice. My doctor did write that I could not drive or work but my company rejected it anyway. I will ask him to be more descriptive in the details because he has seen me at my worst and knows how much I am suffering. He was shocked that a company as large a mine was so heartless. I am trying to do all the right things to get well but so far nothing has worked. I have not taken the valium the doctor gave me. He said to use it when the spinning starts and it would help me tremendously. So far, I have not had another attack like that. I am just constantly dizzy and disoriented. It seems I am permanently stuck in this level of the disease. I have done all the things that should be done, I think. I have practically eliminated salt and dairy from my diet. I understand the elimination of salt but I don't quite know if eliminating all dairy helps. Anyone kow if sugar should be eliminated as well? I have not done that yet but I have lowered my intake of it. I am learning so much from the postings. I am taking lipoflavonoids and vitamin 'C'. Is ginkgo better or should it be added as well? I would appreciate any advice. Anna, I hope you don't leave this website. We need your help and level of experience.

Xianna


hello, ive been reading posts on this site for a about a week now, im from canada and 20 years old. Ive been too my docotor twice and emergency the first time. I dunno if this is what i have or not.. my ear definitely dont hurt at all and my hearing is fine but I deinfitely have a spacey feeling. at first it was really bad couldnt watch tv or anything but now it's not quite as bad. it's been about six weeks now but it seems my progress has stopped it was getting better from unbearable to now bearable but extremely annoying i was wondering if anyone else hit a spot where their improvement just stopped? anything else you can tell me would be greatly apppreciated!!! thank you and i hope this goes away alot sooner than most of you have had to deal with it...makes me seem weak but its very tough on a 20 year old male university student..any response will be helpful....dave


well deus it has improved alittle but all i have left is the spacey head feeling...i still drink beer on the weekends but i heard that dont prolong it just makes u feel worse the next day...so i dont know if that is prolonging it or not..... dave u def. had what i had the first few weeks i couldnt even concentrate on tv....but after like 2 weeks i was able to at least watch some things.....but youll get better...depends on how bad your ear is is how long it takes your brain to adapt............


is it normal for my ears not to hurt at all thought? like i have no idea which ear or anything!! thanks for the quick response..ya i know what ya mean feels like im dying everytime i get hammered so i havent done it in a while


Ear symptoms are not present in some people with labs. But it can be very pronounced and painful in others. Do not ask me - why....

Anna


Anna

You said you have recovered several times from this.Was that recovery in 6 months or a year?Also how do you know if you are close to the end?

I can function and do everything but just feel a little spacey and my vision cant quite focus properly.I think it is getting better, its hard to tell as i cant remember the months before very well!!Hazey days!!

Skazhitye pazhalsta!!Ya vam ochen blagodariyen!!

Deus


dues..........ive recovered once in 4 days, the 2nd time in about 2 weeks and this is the 3rd and its been 10 1/2 months.........so it all depends....when i recovered the other two times it faded away each day and i woke up one day and it was gone!!!!!!!!!!!!!!!


Hi everyone

Hope you are all feeling a little better today. This illness has a very slow recovery rate but you do get better.

Dave, you are like me. I had an upper respiratory tract infection in Nov 2004, and a couple of weeks later started with dizziness which was pretty scary. Doc told me it was inner ear and gave me Stemetil which I took for 3 weeks and was fine. I had on/off dizziness for 3 mths til April 05 when I caught gastroentitis and was pretty ill, bedridden for 8 days. This was combined with terrible dizziness and when I did get out of bed I was very off balance. My ears were never painful though I did have 'uncomfortable' feelings, nothing too bad. I have never had any deafness either, same as you. It was pretty grotty at this time because I could not watch TV, especially if there was any red on the screen, the volume was on number 1, I couldn't use the phone or read a magazine. After a few weeks I was able to watch TV and use the phone but even now I can still have problems reading. It brings on my symptoms again. I suffered from terrible anxiety and was off work for 5 months. I have visited the ENT and they have done absolutely nothing. I have had balance tests etc and had no results. I am due to go back in Jan. I have been back at work since 14 Sept, and have been pretty good, though I do have moments of mild dizziness and sometimes feel off balance. I do not have anxiety now. Yesterday, however I was sent home from work as I felt very off balance. I have heard mentioned a few times about fluid building up in the ears, and my ears felt under pressure yesterday and I went to the toilet tons of times. It is that 'time of the month' for me so maybe this has something to do with it. Any Ladies have similar symptoms at this time i.e. worse than ususal. I feel better today, still slightly off balance and ears still feel like there's something happening there, but never painful.

Anyway, that's me now, after over a year of this I feel I am still not recovered but am able to lead a nearly normal life!

Just hang on in there it will get better.

Sandie x


this stuff will cause u more anxiety than ever....your heart will beat...u will get tired u will get off balance u will get pains, etc.....its horrible but just remember its not going to kill u its just anxiety...


Those of you who say that you are almost recovered.....do you still have trouble going in stores? Driving and stores are what is keeping me back...they still make me feel weird.


Nope im cool with stores and feel my best when driving (weird!)

I just feel off balance and spacey.Its more frustrating than anything else.

Deus


You are really lucky then Deus......that is what is keeping me from getting out there and living! How old are you? You must be young....I am 29 and I have had to stop doing a lot of things. That spacey head feeling will pass....I feel like it mostly has for me. I am at 8 motnhs.


I'm 22, and being young and outgoing person who always organises the big nights out on the town this illness has caused me much frustration and unhappiness.I have stopped working for a couple of weeks as I thought it was not helping recovery.Also it became depressing having to work with a spacey head every day!I have reached this annoying plateau where the spacey, lightheadedness wont budge much.Some days I think I'm getting better, but then no...

Just hope it will be gone by 6 months, but judging by the blog...that is unlikely.

Want my life back

Deus


dues and I are on the same level im 10 months and i can do stores and everything...its just the spacey head feeling has been dragging for months....it makes me tired alot but other than that im fine....spacey head feeling and tired....i just want this this head to quit lingering cause i would be 100 percent then.....dues lets pray to god buddy....


Hi All

An update on my ongoing battle with this damn thing.

I went to my second ENT appointment today...which was painful but productive.Had an ENG, they stuck electrodes to my head and poured water in my ears.The room span violently and i nearly threw up.Not an experience I wish to have again!! They found i had weakness/damage in my right ear due to labs or whatever.Have been provided with VRT to help train my balance.I was also told to go cycling a lot as this is the best for your balance training.Hopefully i should recover soon.4 more weeks off and its back to work, so Im PRAYING it will go!!!

Having Acupuncture with a woman who claims she can cure me in a few sessions...could be crap but i will try every avenue possible to beat this thing.I find being pro active makes me feel better.Just can wait to be better.Think I will throw a party when i get rid of this thing!!

I will beat it, i will try to live as normal as possible.I'm not getting to the stage where im so used to being dizzy I am learning to live with it.However I hope not forever.

Chad mate...get riding a bike and get rid of the spaciness!! Im pretty certain yours will dissapate in a few months.Im only at 4 1/2 months luckily so hope mine wont drag on too much longer.Oh yeh if you have like one beer...does it feel like you have had about 3???

I had a good old pint the other night and would have been pissed as a fart after a few beers.Was just curious how drinking affected you mate.

A good evening to you all.

do svidaniya vsyem

The one and only dizzy Deus


Hope and faith.

I hope what I am about to write is helpful – I have faith that it will be.

I am getting MUCH better after 10 months. I now have days when I feel great and symptom-free.

This is a very long letter but it’s the kind of thing I hoped to read when I was at my worst points, so hopefully this will help others.

My history: 44 year old male. Severe vertigo about twice a year for 4 years now. Diagnosed as BPPV, the Epley seemed to have worked for me when I finally got it done. Each episode lasted about 5 to 7 days – if I kept my head straight and still, I was semi-ok. As soon as I tilted my head to the left or right, whoa! Spin city.

In February 2005, I caught a wicked flu with bronchitis. Then I entered into the world of real bad dizziness 24/7 which has lasted for 10 months now. Fog, depersonalization, tinnitus, neck, shoulder and cranium pain, nystagmus, nausea, ultra-sensitive ears and eyes, blurry vision, extreme fatigue, nervousness which led to anxiety which led to depression and downright fear. Clogged and crackling ears, heavy head, tilting, whirling, minor ear pain, strange noises in my head and ears, trembling, sweats, trouble sleeping – and all this was constant 24/7.

I ride a bus to work, about an hour and a half one-way (on a good day) in heavy traffic from the mountains to New York City. This was an absolute daily nightmare! Vertigo has no place on a bus to NYC. And once I got there, I walked about 12 minutes across town battling the masses coming at me from every direction, fast and furious along with the unique NYC “aromas” and “sights”. Not fun! I clung to buildings as I walked to work – and once at work, I had to write computer software all day and attend many meetings where I needed my thinking cap (which I couldn’t always find).

Even the shower in the morning was very tough – hanging on to the shower walls trying not to topple out onto the floor. And we all know how elevators are with vertigo.

I would go to work every day and come home and get right into bed for the first month, spinning with ringing ears, numb feelings, tremors, etc. I lost 30 pounds in about 3 weeks. Couldn’t eat, couldn’t watch TV or listen to music, etc. I also had a lot of other commitments that I needed to attend to.

Medical: ENG ok (but not fun), ECOG ok, hearing tests ok, MRI ok. Vestibular Rehab.

Since there is no known cure for this, I eventually figured out that I must do a lot of little things in hope that they will all add up to something significant.

Things I tried that I think helped me: Sudafed (the drowsy kind) - I take half when I feel clogged and dizzy, makes me a bit sleepy but I don’t mind that. Seems to help me a lot. Dramamine or Dramamine II over-the-counter (which is Meclazine, like Anti-Vert) – I took this a few times when I felt really bad – I think it helped me at the time. Xanax – I take half a tab when things get REAL bad and I just don’t want to deal with it. I average about 1 tab per week.

Vitamin B and C – I believe I really noticed improvement after beginning a daily dosage of vitamin B complex. Ginko – I think this may have helped a bit but not sure. I only take one pill a day whereas I think I’m supposed to take three, so I really don’t know. Multi-Vitamin – I think this helped me in a lot of ways. Magnesium/Calcium – this upset my stomach so I didn’t try this for more than a few days. Zinc – if I feel a cold or bug coming on.

Low-sodium diet – I started this in case it was Meniere’s or hydrops but it has helped my general health and I feel a lot better for it. I cut out all junk food and drink about 3/4 gallon of water or more a day. I now eat several small meals a day and lots of fruit and vegetables. I avoid sugar and dairy. I drink decaf green tea daily for relaxation.

Vestibular Rehab – this was very tough at times but I stuck with it and made it part of my daily routine. I believe this was worth it in the long run. I still move my head around a lot even if it makes me dizzy.

Eye exam – I got a full eye exam and now where glasses when my vision gets blurry or strained. This helps me. Lighting – I got rid of the florescent lights at work and this helped me symptomatically. Ear plugs – I use ear plugs when operating loud machinery and in very cold weather. Noise canceling headphones – I use these on the bus so I don’t have to crank the music and aggravate the tinnitus.

Relaxation – I do stretching exercises every day, especially shoulder, neck, jaw and eye exercises. These muscles are connected to the muscles around the ears so I think this is important in my case. Deep abdominal breathing exercises – helps me with the nervousness and anxiety. Plenty of sleep and rest. Hot shower directly on muscles a few times a week and I avoid getting water in my ears. And good posture is important.

In general, I think it is a good idea to force myself into situations like grocery stores and shopping, etc. as long as it is not dangerous. Even if I just go in for a few minutes and buy a few things. It helps with the confidence and I built it up to be able to go Christmas shopping with my wife. And I felt much better after finally telling my family and friends what is going on. I am lucky enough to have a loving, caring wife who has helped me greatly.

Current status: I am at the point where I still have alternating good and bad days but I have enough good days to keep me grounded and keep my mind more at ease and enjoy life again. This is a verrrrrrry slooooow process. I actually feel 90-95% normal a few days a week. I still have days where I’m like 50-50 and days where I feel bad or terrible but they are getting less and less (certainly better than feeling ill 24/7). When I have good days, I try not to over do it and I stick to all of the things that I feel have helped me. When I have bad days, I try to convince myself that I will be better again in a few hours or tomorrow and try to get more rest. I am back to my hobbies of writing and recording my own music, which is something I thought I would never do again.

Hope: I hope we all recover 100% from this. I know I am a changed person (for the better). I’ve slowed down considerably and took a closer look at my life. I’ve re-defined what I consider to be important and what I do not.

Faith: You will get better – just keep the faith.

Merry Christmas, one and all!


Hi, everyone

Beatle Mark - THANK YOU VERY MUCH for your such detailed and encouraging message. In it you covered almost all the topics, that erase with this illness. I usually read such kind of self-observations extremely attentively - they give me more useful information, than any scientific report, which I have read a great number. As a long term sufferer, I have been facing all similar problems both physical and emotional. I think, that FAITH and PATIENCE are essentially important in anybody's fight with this problem. Meanwhile, while you are still in recovery process - just live "one day compartment" kind of life. My personal two motto(s) are: IT WILL BE BETTER TOMORROW (or at least in a week, or in a month) and DO NOT WORRY ABOUT LITTLE THINGS.

Anna


hi all jst been readin thru ur site as i was very confused at wot labs rly is,im 18 ys old n on monday mornin i woke up n wen i moved the whole room felt like it was spinning.i managed to get myself out of be n downstairs afta lyin still until the feelin passed.i didnt think anythin of it but the cloudy feelin in my head made me want to just lie down i lay on the sofa n the spinning feelin occured again.i felt sick with this dizzyness nd was so scared as i didnt no wot it cud be.when i lay stil the feelin passed but i cudnt move as the dizzyness kept comin on.my mam returned home to find me lyin down cryin bcuz of how scared i was that everything seemed to be spinnin.i tried sittin up but had to lie bk down again as i felt like i would faint.my mam rang for the doctor and the doctor came to the house,she did different things like makin me turn my head in different directions nd followin her fingers wit my eyes n thn makin me stand up which was quite bad for me as it jst made me fel rly dizzy still.she saidtht it is labrynthitus nd has given me some tablets,i spent all of monday in bed but havent been tht bad today.i have tried walkin round n it has been ok altho i have the foggy feelin in my head n the dizzyness if i move too quickly i also have the anxiety tht the dizzyness mite keep hapenin.wil i be ok since i hav had quit a gd day today?bcuz iv herd tht it takes a wile to go away completely.will loud noise set it off aswel bcuz it is my frends bday party tomoro nd im scared to go in fear that i mite get the spinnin feeling again.plz help any advice wud be helpful.i no i aint bin sufferin long n all u long term sufferers r so brave respect to u all for tht i no how bad yday was for me n im jst so glad today hasnt been like tht.thx to evry1 on ths site ithas been quite useful being able to read comments i didnt realise jst how common labs is.


I am very frustrated w/ this whole thing. My family just thinks that I have anxiety and I am causing this problem and I just don't feel like I have anyone I know who understands how weird it feels to go through life like this. I want to get back to work and a normal life.....it's just frustrating when you are ready to pick yourself up and fight but your ears are just holding you back....and no matter how strong you try to be you just feel weak and strange. The hardest part is that non one can relate to you. This is such a hard illness.


lauren i agree completely everyone thinks im crazy but they dont understand i feel spacey and am tired alot.....they always say my eyes look tired and i tell them why but they still dont believe me....its terrible i know.....my dad, sister, girlfriend and friends think im crazy


yep i agree.Very frustrated, could lose my job over this illness.Boss doesn't want me back till im 100% and I can't tell him when this will be.I am hoping this will be gone around the year mark.That seems to be the general trend.Going cycling increases rate of compensation by 35% with VRT.Everyone get your brain trained quicker!!

Cant wait to be better, enjoy a few beers without feeling blind drunk, generally enjoy my existence instead of living in Limbo.

If it hasnt gone after a year I will have my labrynth removed!

Deus


Hi everyone,

Beatle Mark, thanks for your post, I felt like I was reading my own story word for word. I seem to be at the same stage as you and the same age. Ok maybe I am a tinsy bit older - I was 45 on Wednesday!. Actually had a really good day so thank god for small mercies! I also have the odd really bad day, most days I would say I am 95% and some days not so good. But we can perservere through this, we are living proof! I don't take any of the medical things you mention but I do still take Stemetil as it works for me, and I only take this when I am at work and feel like I can't cope so I average two pills per week which I don't think is too bad.

Wishing you all a merry christmas and I'm hoping 2006 is going to be a dizzy free year!

Sandie xx


Hi people

Happy xmas 2005!My first dizzy xmas and hopefully the last!

Cycling seems to be helping a little and so does acupuncture.It weird i can function quite well doing such things, but just have mild dizziness.Hopefully if i persevere with the various treatments it will soon go.

I sometimes think i cant be that bad, as i heard a lot of you cant do things like riding a bide or driving a car.I have never had that problem, i just have a 'functional dizziness'.I hope i have go the correct diagnosis of labs!!

Well nearing to the end of month 5 and hoping to be done by month six!

Deus


hey guys

Havent posted here in a while.. I am in africa for xmas and the season as cape town is my home town.

the flight from london to CT took a lot out of me as it was a long flight that stopped over a couple times and i was v.tired the next few days..

even on holiday i have my good days and bad. Bad days are when i feel tired and need to rest more..take a 1-2 hour power nap if need be etc etc..i napped on xmas day!!

good days i can pretty much go out and do anything. I went driving around today 20 minutes to a mates and 20 minutes back over the mountain etc and i felt fine! i know this is a step forward - as in london i dont have a car so i didnt know how it would affect me!

i TRULY believe that you need to change your environment to see how far you have come..

take time off work 1-2 weeks and go somewhere - not far,a short flight or journey, 2 weeks is better to get accustomed, if you cant take the flight, maybe a train journey somewhere to the coast to different scenary..

why? because its half the anxiety of situations you are so used to ie work, that same mall down the rd etc etc and when you are in different situations and scenarios you surprise yourself on actually how well you cope..

you will go back home with a renewed strength and more confidence.

thats really the best advice i can give,

I wish all the best best best in the new year and a 120% recovery for all of us in 2006!

dee xxxx


Hi Dee! I was just about to ask how you were when I pulled up the site and you has just posted......so glad to hear that you are getting out and doing things and challanging yourself! I really hope that by 2006 we will all be doing a lot better. Christmas I went about 3 hours away with my boyfriend and did a lot of activites w/ his family....and it was very tough...but I got through it...and was just happy for a change of scenery and to be surrounded by loved ones.....especially the little kids...b/c they don't know that you feel bad and don't treat you any differently. The thing that bothered me the most was just how tired I got and how worn out my head was by the evening. I am trying to get out and do more...today I made myself drive just short distances.....it starts out okay...and then the dizziness kicks in a little...it's a weird feeling...like it makes me tired all of a sudden. Dues- you seem to have the right attitude...hope that bike riding helps. I meant to ask my mom to borrow her bike over Christmas but forgot. Chad- I hope that you are feeling a little less spacey....and are doing better. Anna- Hang in there.....you have the right attitude to beat this! and everyone else just take one day at a time...and just do a little more and more over time. Nothing can last forever...your body eventually will fight this thing off.


so how many people got anxiety from this like their heart beats alot when they do something and they feel like they have trouble breathing etc.??????????? its a terrible sickness...that has been my symptoms recently


My 'Beat labrynthitis' regime has begun.

Since I am off work at the moment and will be for a while I am doing evreything I can to get rid of this as quick as possible.Exercise and Vitamins are the answer.

I cycle everyday (or perhaps even twice) and go to the gym.This helps in 2 ways-it takes your mind of the dizziness and you feel like you are 'actively' getting rid of it.The only negative to this is you have a mal de embarquement feeling when you get off the bike (ie feeling more dizzy and off balance), but hopefully the more i challenge my brain the better this will get.

VRT-3x 10 mins of head exercises per day as directed by ENT specialist.The problem with these is I cant tell if they are helping, because they would make any non labs person dizzy surely?

Vitamins etc- If you get fatigued by this quite a lot (which a lot of you seem to report) I suggest getting a hold of Pharmaton capsules.They are expensive but are the best Vitamins on the market and do help keep your strength and immune system up.

I also take Gingo Biboa each day- not sure how much this helps but its worth a go!

I would say my dizziness has improved on a day to day average over the past months, but marginally.

I have never suffered a debilitating dizziness where I cannot do day to day things.I feel my best when driving, can go shopping etc.It is simply an effort to do them and is draining psychologically.It efects me socially as i cant really drink in the day or at night much.As when i have a drink I feel like Ive had 3 or 4!!

I just really want to leave this mild dizziness plateau.I know I shouldnt complain as i have read of people with much worse symptoms for a long time.

I have had a brief recovery of 10 days WITH NO SYMPTOMS after my first month of labs, but then it all came back.This, I just cant understand why it came back.It has always puzzled me.

So a few questions:

Anna- In your previous bouts, did you start to have dizzy free days or did you wake up one day and it was gone? Im just finding it hard to guage when im in my last stages.

Dee-Do you now have many dizzy free days.Is your dizziness a light headed,slightly drunk feeling?By the way I have heard Kaapstad in SA is a lovely place.Very jealous.

Lauren-You say your dizziness 'kicks in' at times.Does this mean you have attacks of dizziness and it is not 24/7 dizziness? Perhaps yours is triggered by anxious situations.

Chad- I think you maybe in the same situation as me-has your spaciness improved at all?

Sorry for all the questions but I had a lot to ask , as I am trying to figure out when one is in the final stages of this illness.It is just frustrating to not know if you are getting better or not!

Deus


oh and what are the chances of a recurence and is there anything to do to prevent it?

Deus


I have never had the true spinning sensation of vertigo where I get sick or anything.....it just happened one day for me and I thought it was a hangover...and then it never went away. Spacey headed feeling 24/7....it is better in the house...the day is tolerable..night is always worse. Things that trigger it to feel worse are driving and grocery stores and busy places....that's what I mean by kicks in. I want to say that it is getting a little bit better....but I just can't tell if I am getting used to being this way...or it is actually going away.


Very interesting hearing from other who are going through similar conditions as myself. 2 months ago I went to bed at midnight and woke up at 0200 with a blocked ear. I thought it was water but when I woke up found out I had lost my equilibrium and had severe vertigo. I was at sea at the time. I fought it for 3-4 days. At day 4 I lost 100 hearing in left ear, left face numb, blurry vision in left eye, vertigo, equilibrium the same, and diminished cognitive skills. Was flow ashore and diagnosed with Acute Labyrinthitus. After 2 months, most conditions are normal with following exceptions:

(1) A spacey feeling - extremely hard to explain to most. Like I've had 3 or so beers. Just all not clicking. (2) 99% of hearing returned to left ear. Some lost high pitch, but ENT says it's a miracle.

You all are correct, the healing process is so slow / depression & anxiety definitely an issue. I have yet to take any pills for dep or anx but from most of you, it's recommended. I get up sometimes just to see if I'm fully cured! I'm on a ship and they've sailed without me this trip. Docs/ENT mention until you've beat this in full, don't risk recovery by going back to sea. I worked onboard while ship inport (I think it was a mistake but I felt terrible staying away from my crew).

Trying to keep this in perspective, hopefully the day is quickly approaching that I beat this in full. Any suggestions on the spacey feeling I have left?


Hi All

Well its New Years Eve and I have came down with a cold yesterday which has worsened my symptoms.I was hoping to come into the new year with hope and a sense of enjoyment,alas no...

This is turn has made me feel angry and frustrated and upset as a year ago i was at the top of my game....happy and living life.

I have decided the worst thing about this illness is the inconsistency and the sense of false hope it gives you when you think you maybe getting better.I try so hard with cycling, acupuncture VRT etc to no avail.I can handle a year of this, but hearing cases of 2,3 years scares me as my life will be destroyed and i wont be able to cope.

Happy New Year to all and may 2006 bring us new hope in this battle of the ear.

Deus

p.s How do you know if you have Eustachian Tube dsyfuction?I heard this could be a cause of dizziness and is EASILY cured.

Deus


The New Year is coming to Oklahoma!

I wish my family, my friends, myself and all of you, guys - lab. sufferers more luck in year 2006. We all will be slowly, maybe in tiny steps, but getting better and better - I am ABSOLUTELY SURE (because I am STILL GETTING BETTER even in my really bad case). Our lives are not "destroyed", Deus - they are "changed". What is a good thing - we definitely became wiser, stronger, just better persons.

Rich - THANK YOU!!!!!!!! for holding us here together.

Yours, Anna


You're welcome, Anna. And happy New Year everyone!


its new years morning and i went out last night but didnt really drink i have been feeeling just tired and spacey and didnt feel like drinking its been 11 months now for me....i am seriously done drinking and start running everyday and see if i could shake this im going to see a specialist again (even though they cant cure me) its been like 5 months since ive seen them...i feel for everybody 24/7 spacey then when i drink i cant get out of bed for like2 days its horrible....i pray everyday to get my life back and for somereason this happened to me....im hoping me quit drinking beer is going to cure me but who knows anything with this weird sickness.......chad


I found NYE to be pretty awful. I went to see my friends band play....thinking that I had been feeling better...maybe I could see how I felt. It was the worst idea ever.....after paying for parking and to get in...basically just had to turn around and leave. I found that it was the sounds that just overwhelmed me....it was as if my ear drums were pulsating.....people kept trying to come up and talk to me...and I jsut looked like a deer in headlights I am sure....very uncomfortable. I had 2 drinks....and that sedated my ears a little....but I still just wanted to leave, and then broke into tears when my boyfriend drove us home about how different my life is now and how I just can't do the things that I used to do. I want for 2006 to be better....and at least find a way to live w/ this....no matter how much a don't want to deal w/ it I have to.


Feel pretty good today.Just had Acupuncture and it relives my spacy head a lot and makes me feel energetic.Hopefully if i perservere with it the ligheadness, off balance feeling shoudl get even better.

I would suggest people who havent given it a go, try it out.It makes you feel very good even if it doesnt cure your ear.

Lauren-I'm convinced the root cause of your illness is Anxiety combined with labs.You just have to try and brave out situations and leap over the hurdles of social engagements.The more you do it, the easier it will get.The longer you leave it the worse it could get.

Chad-11 months of just spaciness, maybe you should try and look down some different avennues.Check it is nothing to do with your neck and perhaps anything else.I mean that is a long time to just be 'Spacey'

Anna-Do you still speak Russian.Have you been to Yaroslavl?

Deus

Hope everyone else is cool.


well dues i went to a specialist and they checked my ear and said it was pretty damaged and its viral labs.......ive had every possible blood test xray and headscan etc.....so the specialist said its labs........i know 11 months is along time but people suffer longer than that....


u know I THINK EVERYONE ON THIS WEBSITE SHOULD GO TO PAGE 4 hit the LINK UP TOP RIGHT and read LILLAS STORY she had exactly what i had hers lasted 3 years....but she got test done showing it was her left ear damaged i had tests done showing my right ear was pretty damaged...but everything she expereinced i did except the true spinning vertigo at the beginning....but the constant lightheadness spacey head feeliing 24/7...she is now 100 percent....like i said before i have had this before the 1st time 4 days the 2nd time 2 weeks it lasted the 3rd must be a horrible charm!!!!!!!!!!!!!!!!!!!!!!!


Hi, everybody

Deus - we still speak Russian at home. I have never been to Yaroslavl - but I have heard it is a nice town. I was born in Sverdlovsk (Ekaterinburg) and lived there for 40 years until we moved to the USA. It happened because my husband was invited to work as a university professor and to do important research in Physics. We are US citizens now, but nobody never deprived us of Russian citizenship. Our family still likes Russian cuisine - pelmeni, borzh, pirozhki, caviar. Chad is right, unfortunately, - people can suffer from labs and its consiquences longer, than for 6-7 months....

Anna


Yeh I guess labs can go on for a long time.I thought I might be lucky because I never had the true spinning sensation and have always been able to do everything...just felt awful.I think im improving month on month though.Today has been my best day in ages and im sure acupuncture is helping....it is designed to fix damaged nerves in your body.

Anna - it has been a while since I have spoken russian.I spent some time in Yaroslavl, Gorky, Moskva and lived in Petersburg for a while.I love the language and the culture.I also have a degree in it ( ya uchil ruski,serbski i nemetski jezik v gosudarstvom univerziteta SPB)I havent been back since around oct 2004.I still have some russian friends and was pretty fluent back then.I had a great time living there. U menya mnogo haroshik vospomininanii!

Deus


Hi,

It's Kate again, remember me? Back to square one again.SOOOOOO dizzy My Christmas was spent in bed, and boxing day,new year my partner hauled me on to the top floor to see the fire works. Tried to go to work today,lasted until 11am before I had to come home. Chad, I am so sorry to see you still here after all this time,me too buddy! Going to hit it with all guns blazing, Ginko, excersises, you name it. Ilea or Emma, if you are out there still, please email me so I can email you back, unfortunatley I have just moved house and am having to use my work email until our broadband is set up. Has anyone else had recuurring labs like this? I am fine for 6 months and then it hits again big time. This time I am determined to find the answer, I can't take much more of this. Best Wishes to you all,

Kate


Dear All,

Kate i have reccurring labs. The inital episode was dramatic but now all i have the lingering spacey, feeling and the constant walking on a ship sensation. However there have been a 2 or 3 occasions where i have felt a bit of pain in my ear then noticed the "ship legs" are worse over the next few days. Chad i think you and me are at same stage where the inital bout has resolved but we are at the 90% mark. I function nomrally work/ personal life and have come to accept that maybe this may be longer term than initally estimated. I also have chronic sinustis / allergy to dust mite and although my ent quack told me this is irrelevant i really believe it somehow is tied in. Anyway keep well, my next venture to help resolve this is to buy a bike and go cycling. I am happy to correspond by email with anyone. Keep well all,

george - (Melbourne)


Kate - Sorry, that you are back. My labs (with consequences as perilymph fistula and BPPV) is recurrent. It is my fifths bout in 34 years (I am 54 now and healthy other than this horrible thing). Sorry to say, but I do not beleive, that you will answer all the questions in respect with your condition. But definitely, all of us, ESPECIALLY those with recurrent bouts absolutely MUST HAVE to do as much research as possible. Also we MUST know what makes us worse and what makes us better. What I found out is - my dizziness, headaches and fatigue get MUCH worse, if I force myself like crazy and try to be AS ACTIVE AS POSSIBLE by any means. I wear would out my body and mind completely would doing things, that were (in a certain period of time) NOT YET ALLOWED by my impared vestibular system. I found out, that you have to be VERY CAREFUL with any activities while living with this disease, especially if it is recurrent. It is better to overestimate the impact of this condition on your overall health, than to underestimate it!!!! Take care of your body - rest as much as possible, consume vitamins, healthy foods, Gingko Biloba. NEVER EXERCISE to the point of getting fatigued! - Me personally - I do not beleive in anything now except my own PATIENCE and healthy lifestyle with a lot of rest.

Tom - your had many relapses of labs (or whatever it is) - what do you think?

Emma - where are you, how are you doing?

Anna


Kate -Emma and Ilia have their own website, address www.labyrinthitis.org.uk, you can contact them through that. Everyone else should take a look, it is a really helpful site, lots of info and has a guestbook where people write their own experiences. You can keep in touch with each other by clicking on the envelope to the right of the text to get the email addresses.

Take care everyone.

SANDIE x


ill tell what i quit drinking for a few weeks and i feel fine just the lighthead spacey feeling lingering, energy back on treadmill....its been 11 months.....i drank yesterday and feel crappy today.alittle more spacey head feeling..so drinking doesnt prolong it it just makes u feel worse i think for a day or two....


i forgot to mention GO STEELERS!!!!!!!!!!!!!!!!!!!!!!!!!!


question does anyone heart beat real fast after doing something and breath heavy after getting done doing something alittle too much with this sickness????


ANNA how long have u had this one for now...u have been on here along time...this is my 3rd bout im at 11 months it seems like u have been on here longer than that/?????


Chad - me current bout has been lasting since November 2003. Trigger - long transatlantic flight from Japan (positional vertigo, imbalance, nausea). What made me much-much worse in January 2004 - Brandt-Daroff exercises recommended by a local ENT doctor (excruciating non-stop headaches, tingling in the face and hands , noises in the head, horrible sensitivity to noises on top of all the previousely mentioned symptoms). I contionued to hold my job, although it was terrible - I was a very bad employee. In March 2004 my hubby persuaded me to take a break for vacation - he was absolutely sure, that the problem was in "stress", "nerves" and that I overloaded myself with work. We went from Oklahoma to Tahoe lake in California. From the first moment I got on the plane I understood, that that vacation was a BIG-BIG mistake. Roaring sounds of motors on the plane, busy airports, talks at the parties with a lot of people. I was half-dead when I returned from the vacation (fatigued, weak, hold my head with both hands to keep it straight, the longest route - the the bathroom and back to the bed on top of all previousely disrcibed symptoms). I was on short-term disability for 4 months. I was not well when I started to work again. My idea was to take it easy and that the illness would surrender to my strong will and desire with time. Unfortunately it did not happened and in June 2005 I was so ill, that I went on a short-term disability (6 months in our company). Currently, I am applying for a long-term disability through an Insurance Company. Frankly speaking, I am not sure, that I willbe awarded the benefits. It looks like they never head of such a "strange illness". The good thing is, that little by little my symptoms are getting easier. The process is SLOW, but it is still moving towards the better.

Keep faith and patience, everybody.

Hugs,

Anna


while that is over 2 years.....do u have the lighthead feeling 24/7 like me.....im afraid mine is going to last that long this is unreal....i dont think its ever going to go away.....


Anna, you asked a few days back what I think as a long-term sufferer about exersize and this condition. I've been away from internet access for a week and didn't catch your comments 'till now.

I've found about exactly what you have. Too much shaky movement of the head is almost SURE to bring an attack on. I had to give up cycling on anything but the smoothest roads. Jogging would be deadly for the same reason. I avoid any very quick violent movement in general.

Loud noise I avoid as much as possible. Along with SHAKING another thing that is SURE to set off a vertigo attack is exposure to cold wind in my ears. ( esp. one ear in particular ) In fact cold can be counted on to bring it on invariably!

On a positive note, I've found that mild excersize is very benificial, as long as it doesn't involve violent movement. -- walking is great, though a bit uncomfortable depending on what state of dizzyness you happen to be in at the outset. In the initial stages of an attack of real vertigo it wouldn't be possible to even walk at all but I think when the worst of that stage passes it would be very good to amble around for short distances. ............ I'm never completely free of the damn thing but I feel a lot better when I get SOME excersize. I noticed the remark about ones heart beating faster after doing tasks that at one time would not have brought on that reaction. I wonder if this might just be a result of resisting even mild excersize due to the discomfort brought on by the illness? It's understandable of course that we want to avoid the discomfort of even just walking when we're trying to do it in a state of semi-nausea. Still, we should make certain we get SOME excersize. In my case it makes a BIG difference. Just avoid the violent kind............. I've found that if you kind of slowly re-develope your energy levels (over time) after a bad bout of this, you can end up doing some fairly strenuous things. I in fact just had a 6 mile hike in the mountains a few days ago and my heart beat remained re-assuringly strong and steady. Still a bit dizzy and a tad spacey of course but after 20 years, THAT seems NORMAL for me. ( I hope that doesn't depress anyone. Fact is, if you can get to the point where you can get SOME control over this thing, you can have a high-quality life again. Everything is relative in life. That 6 miles in the mountains was a far greatr treat to me than it would have been when I was in perfect condition in my teens.)

By the way, I've also been wondering if the reason people with this condition find DRIVING to be nauseating, is the head movement involved.

Hope that's of SOME help Anna and All.

Tom


Chad - I am not light-headed, but rather heavy-headed and ache-headed 24/7. I have to move very slowly all the time. As soon as I try to move faster (walk, or turn my head and body) the world around me swirls. As far as I remember from my previous bouts (they fortunately ended up with full remissions) lightheaded feeling was the most stubborn of all other symptoms and it disappeared the last. From what the medical science proclaim now - lightheaded feeling is still a form of dizziness and it means that your brain is "compensating " for the damage caused to your vestibular system by labyrinthitis. So, your brain is working on the proble . Let's just hope, that it will not take too long. My 28 year old daughter (smart girl working on a PhD degree in the field of meidcal molecular biology) told me once "Nothing in our bodies stays at the same level and nothing lasts forever. As far as your symptoms are changing to the better - your illness is MOVING TO THE END".

Meanwhile - live your lives. Do things, that you CAN do and try to stop worrying about things, that are not under our control (like this awful illness, for example).

Anna


anna i might have this alittle different than u i never had the complete spinning of the room or nothing just woke up and felt lightheaded and went to specialist for tests....how long did your pasts one last????????????DID THEY LAST THIS LONG....its been 11 months for me and spacey head feeling has been dragging on for months now its one of my last symptoms left..... before when i had sickness years ago the spacey head feeling was 4 days the other time was like 2 or 3 weeks...but this is insane this one...


Has anybody ever tried Vasodialators for this ear thing? I have taken them for a little over and month and see maybe a little improvement. It is a mainly vitamin regimene that is supposed to rush the blood to your ears to improve circulation. If I could just get rid of this dizziness I could function.....going in stores and restaurants really gets to me.


Hi, everyone

Tom - I agree 100% with your approach to exersises. In my case I do absolutely the same - no sharp movements, no shaking of the head and body - they make me sick immedeately. But WALKING is pleasant - after a slow walk in quiet environment I feel GREAT. And my walking distances have been becoming longer and longer. While walking I am not stiff (I used to start with being stiff and walked just 20 steps at a time after the worst times in bed), but move my head slowly to look around.

Everybody who has stubborn long-term vague dizziness and spacey feeling. I think, that medical community started to pay more attention to this condition refferring to it as CHRONIC DIZZINESS (Chad - probably, at this point you fall under this category). I found several latest interesting articles about it. Look at this one:

http://www.treatment-options.com/article.cfm?PubID=NE04-4-1-03&Type=Article&KeyWords=

From it the most interesting abstract concerning treatment of chronic dizziness: "Recently, selective serotonin reuptake inhibitors (SSRIs) have been found beneficial in an open-label series of patients with chronic dizziness, regardless of whether a co-existing psychiatric diagnosis is present. Patients with complaint of exercise-induced dizziness, often young, athletic individuals, may be particularly helped with this treatment [4, Class II]. Use of SSRIs has been shown to be effective in a special group of patients presenting with exertion induced vague complaints of dizziness and symptoms of autonomic dysregulation".

Just to remind you: selective serotonin reuptake inhibitors (SSRIs)are well-known paxil, zoloft etc. FDA approved for depression and anxiety. In another sourse, I also found a referral to extensive clinical trials to prove or unprove the positive effect of SSRIs on chronically dizzy patients.

Chad (and others!) - if you are not taking any of SSRIs, maybe it is worth trying!

Yours, Anna

(I have been on Paxil for more, than a year and a half - I think I could not have survived without it. During the worst times I was on 50 mg of Paxil daily, now I am on 20 mg daily.


Hello Fellow Labbies,

To my total disbelief, my labs are back. It's been about a year and a half since I recovered. I am dizzy, fatiqued, have a loss of appetite and I feel totally unmotivated. This virus is knocking me on my butt.

Anna, did the paxil make you gain much weight? I just came back from a trip to Iceland over Christmas, and I haven't felt well since. The weather in New Jersey has been unseasonable warm. Do you think a reoccurance of this will last as long as the first one? (9 months) I am feeling so depressed.


Hey all

Lauren - your quote:

"Nothing can last forever...your body eventually will fight this thing off."

is true, we just have to believe that it will ..

Deus - my dizzyness is not 24/7 and is more a lightheaded feeling yes..

the symptoms i am trying to get over more now is the tiredness and i am easily fatigued..

I also think, that after having this for a while, Its ALSO the emotional and mental journey of it all and that will take a while to get over even once the labs is gone..

i have had good days though! especially on my trip home, i have had days when i was busy and driving around and felt ok. (theres no WAY i would have driven around 4 months ago!!)

I think i also felt better as i had the family support. and good weather sunny clear air etc

my energy levels just need to come up, but also i think this illness brings on stress - emotional and mental and i think that debilitates(?spelling) us more than we know..

Just give yourselves credit..! Do the things you can do..

I am starting to go back into the office now - only once a week for a monday morning meeting and stay a couple hours..

As soon as your body starts accustomizing to things - it will do it better..

so, the more i go in, the easier it will be.

I dont do much there though when im there! I kinda just sit at my desk and dont even get up for tea or whatever in case i feel worse! haha

I hope my energy one day just zooomms back in!

PS YOGA YOGA YOGA Maybe doing lots of exercise aint good, but try a yoga class, i am trying it once a week, and you can pat yourself on the back just for going..

It stretches the muscles that you havent stretched in a while, and at least helps you take care of your body

dee xxx


Are you the Robin that recovered 6 months (August 2005) ago and posted about being 100% apart from Barometic changes or another Robin? Cos you are both from New Jersey and took 9 months too recover.

I'm sorry if it has come back so quickly.I would be upset if i got it again.


Hi, everyone.

Robin – what a sad news, that you have IT back. I am always hoping, that everybody who left this site at some point would never come back, or would come back just to remind us, that they are OK. The nature of this ailment is so unpredictable and it takes so many different patterns, that sometimes I feel almost sorry for “poor” doctors when they have to answer direct patients’ question: “What is my prognosis?” Paxil did not make me gain weight (I was 132 lb a year and a half ago before started taking it and now I am 137 lb). 5 lb gain I attribute to not going to the gym twice a week for quit active aerobics. As I was always obsessed with being fit and looking youthful, I have reduced my calory intake (just smaller portions). I was thinking a lot of time about the emotional impact DO NOT ALLOW ANYBODY (I repeat – ANYBODY, including your loving spouse, parents, friends, or doctors) DICTATE HOW YOU SHOULD FEEL PHYSICALLY OR EMOTIONALLY!!! You and only you know what is going with your head, body and your mind! Do not allow anybody to dictate WHAT YOU CAN or CANNOT DO. Robin – you once mentioned, that your parents thought, that “it was your fault, that you got sick”. They probably think, that your illness is something, that you can “shake off”, or “take under control” if you were strong enough and “push harder”. Perhaps, they just do not want TO BELIEVE, that you are THAT SICK! I had a lot of awful emotions (anger, bitterness, grief) when my illness would come back after a dizzy free (happy!!!!) years. And it always looked like nobody (including my loving and beloved husband) SHARED those emotions with me. I thought – why DO NOT they UNDERSTAND what I am going through.. I felt horrible physically and emotionally and it seemed like nobody CARED. WHY????- I would ask myself. Recently, I found a great website http://www.myida.org/booklet.htm that actually helped me answer some of those questions. It was a RELEIF! I recommend it to ALL OF YOU. I forced my dear hubby to read 24 (only!) pages of a booklet, that I ordered from this site, right in front of me. I highlighted everything, that was relevant and important with a yellow marker. I just took my husband’s hand, looked him straight into the eyes and said “If you REALLY LOVE ME you READ THIS in front of me!”. It was funny, but he RECOGNISED himself and myself while reading the booklet. The name of the booklet is “But you LOOK good” ….. It made a little miracle - for the first time in 32 years of our marriage and in the end (I hope!) of the fifth bout of my inner ear disorder ( four of the bouts happened during our marriage) my dear healthy (Thanks God!) hubby UNDERSTOOD something. Finally, I am allowed NOT TO PRETEND all the time, that I FEEL GOOD and that I am happy all the time. What a relief indeed!

Dee – mentioned YOGA to be helpful in stretching muscles. I would add Thi – Chi (not sure about the spelling). It is great for balance, especially for standing still (quite a problem for the majority of us).

Hugs, Anna


I'm just starting my 14th week with this and finding it very difficult. I haven't worked since it all started and although I thought I was getting better (slowly) I've just had 4 terrible days, spinning, sickness, jumping vision. I don't know why I'm having this setback. Does anyone else get terrible neck and back pain. My left hand has been tight and numb for nearly 4 months now. Frances


Hi everyone,

I have been reading the posts on this site for a while. I have also been suffering from dizziness for a little over a year now. I have not been formally diagnosed with Labyrinthitis but I do know that I have about 27% vestibular deficit on my right side. Some days are good, other days are awful. I do not have room spinning dizziness but more of a lightheadedness. Every now and again I will feel like I am walking on pillows, but it is really the lightheadedness that is killing me. It's so hard to explain to someone that it feels like the inside of your head is spinning, not the outside world. The best I can describe it is like when you laugh so hard that you feel like you will pass out. Too bad not much makes me laugh anymore.

Anyway, I have been reading many posts where people talk about jumping vision. What do you mean by this? I have this thing where I can look at something and then when I look away I see the same image again in the negative form. Weird, huh? I was just wondering what most other people mean.

Thanks, michele


hello

wow its good to know people are out there just like me. im 21 and since last september ive been fighting this off balance walking on a boat feeling. doctors say viral infection probably. they never said labs or the other one...neutires or something. but what else could it be? i had eng and it showed weakness in right ear. went to pt and he confirmed it. keep being told its going to go away. no doctors seem too worried or concerned. its crazy how a doctor will say this is something that will pass and say its no big deal really and you could be sitting right across from him with this horrible feeling thinking....are you crazy??? had mris and blood work done. other than this i am an extreamly heathly boy. only had the flu 2 times in my life...2nd time was in december on christmas eve with this inner ear thing. when i get sick...i get siiiiiiccckkk. anyways....i do know deep down despite my anxiety and fears that this will go away just i don't know when. i lost my job. if eel its my fault cause i was just scared to go to work with this feeling. maybe im just being a baby. i do notice that im not feeling so much like im swaying so much now its turning into lightheaded and once in a while my head feeling like its being shifted. now when their is a weakness in one ear from an eng does that mean nerve damage?? or just that somethings going on. ive heard that viruses very rarely cause perminate nerve damage...but could be wrong. im just scared of recurent bouts of it. anna- do you have allergies or sinus problems that keep them coming back? ive been told that it very rarley does come back. it just depends on the person. im worried cause im lucky now that i don't have kids or anything to support now cause i would be screwed. so im glad im getting this now...but im just scared of damage that i can't undo. im used to being a guy that people come to for help and support and stuff and now im like the one who can't take care of himself. i hate that. i need complete control of stuff. ive always been that way. and this is definely not control. any advice? hope everyone is feeling better.

oh....ive been taking xanax..well the genric kind. ive noticed that with that stuff i feel almost normal again. untill it wears off. im doing vrt and wondering if it will interfere? im only taking .5mgs no more than 2 a day. usualy only take one if any cause i know that doing it naturally like anything else is the best. could you imagaine living like 300 years ago and having something like this??? they would probably stone you or something. in the words of steve martin from snl when he was the cave man doctor....."he will be just fine after a good bleeding!"


FRANCES----i get pains all the time, this sickness will cause alot of different stuff, my heart even beats when i walk up like a few steps of stairs sometimes....but ive had everything checked out and its my ear.... MICHELLE----me and u are exactly the same i never had the true vertigo either but mine has been about 1 year of just lightheadness...

the worst symtom for me is like if im real tired and i try to walk up alot of steps or something i start breathing heavy and heart starts beating...its been doing it on and off for like 1 year...doctor said cause my body is so weak when u try doing to much your heart starts working overtime in a way...and thats why it beats so hard....its weird....


IF SOMEONE COULD RESPOND ANNA OR ANYONE about this...ive heard a ton of people respond to a tingling feeling in head arms etc...and ive def. go the feeling before but sometimes i get it like from my chest up through my throat like after some activity or something anyone had anything even alittle similar????????


MICHELLE GIVE ME SOME OTHER SYMPTOMS U HAVE HAD>>>>IVE HAD them all heart beat, pains, tinglings, lightheadness, stiff neck etc.... cause were both at 1 year and weve probably had all the same


Copied from another website:

"Hi All,

Here's a website that is well worth looking at. The movies are great, particularly on compensation and MAV.

www.meei.harvard.edu/patient/rauch.php

Scroll down to the video clips at the bottom.

Best...Scott Viral labyrinthitis or VN Aug 2003. Very ill for 6 months until beginning SSRI treatment (Cipramil 10 mg). Saw immediate and large improvement within 6 weeks. About 97% now."

Copied by Anna

Chad, Frances, everyone - I am still having (or have had) a lot of neurological symptoms. Hot breathing from the chest up to the throat, tingling (pins and needles) and real numbness in hands, face and tongue, even face and eye drooping of the left side of my face when I am tired. All strange, wierd and scary... I do not have allergy and sinus problems in between the bouts. During the bouts I feel my nose totally stuffed almost all the time and I use decongestant (over-the counter nose spray) almost constantly.

Anna


Chad,

not sure about the tingling, but I have heard other people having tingling in different parts of their bodies.

I myself get the Fatigure and Its soooo annoying... Also, the heartbeat thing could be anxiety you know... sometimes it is hard to separate the two.... as the iner ear does cause these symptoms.

Sam


Chad

Thanks for your reply. I'm seeing a physio with neck problems and I also have tingling in my body. My left hand is really tight and so is my left side, especially when I walk. Like you, I get palpitations. I spent a week in hospital because of it but all the tests showed up clear including an echo cardiogram/X rays and brain scan. Labs was to blame for all of it. My GP says its all just anxiety. Apparently the vestibular system controls anxiety levels and also the nerve endings in our bodies. I think this must account for the strange feelings - I hope!! Do any of you suffer visual problems and my eyesight is really freaking me out. Every day is the same - jumping vision and everything moving. It does let up occasionally but no chance of me getting back to work yet.


dont worry frances i have all them i have had brain scans xrays everything....my eyes are always glossy and my site it always messed up 24/7 real spacey looking.....dont let anyone tell u u are ok everyone knows there own body i want to be out everynight and partying etc. but i cant and people are starting to realize there is a inner ear problem and its just not anxiety....


fRANCES - you said: "My GP says its all just anxiety." Your symptoms, Frances (including jumping vision, as you mentioned) are not in ANY contradiction with symptoms of an inner ear disorder and they are already discribed in medical literature. Your GP is just IGNORANT (sorry!). Probably, you are just waisting you time, nerves and money coming to your GP with complaints like yours. It happpened to me many times in my life before I educated myself and started to seek medical attention from specialists who DO UNDERSTAND the problem and WHO WISH to deal with my complicated symptoms.

Anna


Anna/Chad

Hope I didn't mislead you both - GP knows I have Labs but doesn't understand it at all. I've taught her a lot about it as she said it would go in 2 weeks!! Eye jumping is slowly getting better but taking a long time. I'm more concerned with body tightness, numbness and a feeling of cold spots in different places!! I just think I'm falling apart but I keep plodding on regardless............


I went shopping this morning and made a fool of myself. I'm feeling quite miserable and fragile today and when a sad song was played in the store I started crying. What a fool!! I decided to ring Crawley Hospital when I got home because I haven't heard anything about when my vestibular tests will be done. They haven't had a letter from East Surrey Hospital (as promised) so now I've got to chase them up. Apparently tests could be done in 6-8 months time as they are too busy. Some good did come out of this conversation though because I happened to speak to the head of the testing clinic and she very kindly gave me 30mins of her time. I had all my questions answered and she congratulated me on coming so far in 14 weeks. Compensate, compensate was the thing she pushed more than anything else in the conversation (sounds like Emma's advice!!) and she also explained why we have the anxiety, muscle tension, pins and needles etc. Apparently someone with 100% vestibular damage can compensate earlier than someone with 10% if they have the determination and willpower to keep a positive attitude and push themselves with exercises etc. Environments/activities that upset our symptoms the most should be the ones that we do the most so the anxiety lessens each time we do it. I've been given a new boost of confidence now and she said besides the exercises the best for compensating is going for a walk in the near dark. She said this seems to quicken recovery quite a lot. I'll be going out in the dark tonight!! Enough of my ramblings, which you all know already. Hope you are all okay today and enjoy your walk in the dark tonight!.

Frances


hello all

well its been about 4 months for me and i got to say that im starting to feel alittle better. slow changes but changes indeed. my neurologist said that these viruses just happen and it takes time to go away. i asked him if people that have had this are more likely to get it again after words and he said no...once you recovered you are recovered just like any other type of virus. does this mean you will never ever get it again....no....but it means your just as likely to get it again as anyone is likely to get it for the 1st time. the odds of getting it in the 1st place is very slim....hence alot of people not understanding it and or ever hearing of it until it happens to them. i feel that i am starting to get better and when i do reach 100% im going to live my life to the fullest and not worry about it. viruses are just weird things that can attack anyone at any time. i knew a girl who was a friend of my mothers. healthy and everything....had a virus that attacked her and she was wheelchair bound for 6 months. doctors could not find one thing wrong with her. after all the tests for tumors and strokes and everything once they all came back normal she was told it was a virus and it will go away. can you imagine being wheel cahir bound and being told it was a virus and you will get back to normal?? well she had good spirits about it and she knew that it was going to go away...though when your that low its got to be impossible to think that you will get better or to think wow what if i have this forever?? but just like that...this will go away. now after about a year shes pefectly recovered and has been for the last 7 years. gone without a trace. its crazy but it happens. stay uplifted and take this as a lesson and take this time to think about your life and what your going to do with it once your back to 100% my doctors say that people with recurrent bout of this might want to look into meniers or other kinds of problems like that. MAV and such. but if doctors say it a virus...even though it sounds impossible and quite frankly...stupid. its most likey very true and just have to wait it out. i hate this feeling but i know that their are much worse diseases out there and some don't go away so we all atleast know ours does.


Chris - (good boy!)everything that you wrote is absolutely correct. I also know many personal stories of FULL RECOVERY after being ill with IT quite severely and/or quite long! I try to cheer myself up with these success stories - it works well even for such a sceptical person as me. Actually - this illness made me sceptical and bitter (I am constantly working on being more patient and less irritable!)

Anna


hello

anna i have a few questions. your on your 5th bout of labs/bppv? now did you ever get diagnosed with anything or are you guessing thats what you have. also i read a couple pages back that you had surgurys? what kind did you have? any ones for the ear problems? im sorry to hear you have had this 5 times. im confused on the danage that viruses can do. im told that the virus can cause damage but your body cures itself in time. how can one have perminate damage?


Which video must we look at here for labs & compensation??

www.meei.harvard.edu/patient/rauch.php

? i cant see anything on labs

dee


Hi All

I havent posted in a while.I have had some great improvement in january and it really lifted my spirits.I thought all my hard work cycling on my bike was starting to pay off.But the last 2 days i have been feeling quite off and it has discouraged me.Its so ANNOYING when you think you are getting better and you get a knock back like this.Why has it happened? I hope my good period returns and this gradually starts to go.I have so much I want to do and am fed up of my life being on hold.I have had this for 6 months and am hoping I will be clear by a year.I am trying so hard to beat it keeping very active and positive.Sorry to vent but it so IRRITATING.I want to be 100% 1 day.

Deus


Deus, the same has been happening to me. I am at the 14 month stage since I first started having problems. My Labs started quite tamely with just dizziness/lightheadedness then got worse at the 4 month stage when I caught another virus. Since then I have been really bad, dizziness, off balance, anxiety big time! This second bout lasted for 5 months during which time I could not work. I have been back to work for 5 months now and have only been sent home once because I was really off balance. I have always forced myself to do things as I feel this is the way forward especially to overcome the anxiety. At first I would always be with someone then gradually I would do things, even just for 5 minutes to get myself used to being in the real world again. I still have bad days which I can cope with fantastically at home where I obviously feel safe but when I am at work and I feel this way (off balance), I try and fight it and I am finding that these episodes are becoming less and less. I have been referred to a rehabilitation programme (obviously VRT), but who knows by the time they send for me I might be completely recovered! So don't worry this is a normal part of the recovery process, feeling great and then feeling like it's all back again. Believe me, even on my bad days now I am a million times better than the early days! Deus I also find that if I am really tired I feel quite off balance so keep exercising but try not to overdo it too much. Take care.

SANDIE


Hello All,

I was hoping I wouldn't be posting here again ever, but it looks like I was way too optimistic. I had been feeling really well for the past 8-10 months. Just like before I was first felled by this virus. Then in January I started getting the light-headedness, fatigue, loss of appetite and the weird tingling in my tong and mouth again. I am having a very heard time concentrating at work and hoping nobody is really noticing. I can't afford to take off. My first time experience with Labs was in August of 2004 and it took nine months to really fell good again. All I really want to do is sleep. I am afraid of going on any anti-depressives because of the side effects. we've had a very strang winter in New Jersey this year and last time I saw all the doctors just to be told the same as all of you. time- time- time That's about all you can do is to wait it our. I am cold all the time except for at night when I get horrible night sweats. I am 50ish so there is monopause mixed in here. I am afraid and depressed. I am a very high energy person and I miss the person I was. I have a young daughter and nice husband that I know I am letting down. It's not as bad as the first time, but it's still lousy. And yes, I am the woman from NJ who said just last August I was better, except when there is barometic changes.


Well you have beaten it once Robin and you will beat it again.Naturally I too would be upset and pissed off if this came back again.I know I can beat this bout but am fearing a second bout.However the good news this is you are probably just having a slight decompensation phase and with good sleep and rest it will pass soon and wont take 9 months!So try not to worry too much about it.It will pass as it did before.

As far as I know most people who have had this once decomp and it is very normal.

I have had this six months (got it August 2005)and hopefully like your previous bout will be recovered by month 9.I am currently off work, a young person ,energetic and wanting to get on with my life! The day I am recovered will be the happiest in my life...even it comes back.

Deus


I am at the 4 month mark now and still off work. I'm working hard to get my life back but its really difficult. Worse symptoms for me are the eye jumping and muscle tension. I went for a long, long walk yesterday and decided to get out of my "comfort zone" and climb a very steep hill which really gave me the dizzies. Had a terrible evening, worsening symptoms, panic attacks etc but I know I'll be better in the long run. Not too bad again today so am planning to tackle public transport which I haven't done yet. Seeing GP again on Wednesday (last time 3 weeks ago) so guess I'll get another sick note - hope I have a job to go back to at the end of all this. My neck and muscle problems seem to be just as bad as ever but I do think labs is getting better. Hope you all have a good day.

Frances


hello

i hope everyone is doing better today. i was starting to get better and then had a couple days where it seemed it was back to the crap and now today it seems bearable again. this virus sucks. good news is they say only 5% people get it back again in their lives. which is basically the % of people who get it in the 1st place. i asked my doc if having it once meant that you are more likey to get it againa nd he said no. that once you recover than you recover. i read that recurring bouts could mean bppv or other things like meniers. its crazy how many sports people have had this. but they all seem to get back to normal. ive had it for just over 4 months. was told recovery could take up to 6. lets hope thats true


frances muscle tension you say.....what do u mean by that....are you twitching and shaking??????


hello

well ive hit the 4 and 1/2 month mark and im still kinda scared about this whole thing. ive been told by all my doctors and evryone ive seen said it goes away just keep on doing the excercises and you will be fine. i think the anxiety is really weighing me down. even though i got all these tests done and they all came back negative i still can't get it out of my mind that i must have some horrible illness that made this happen. i know i don't have anything but i can't get it out of my mind. i even went out and had a hiv test. thank God that came back negative. anyone else have real bad anxiety about this? i watched home movies yesterday of me and my brothers when we were kids and i got so sad and anxious looking at how happy we are were. i need some reassurance


Hi, everybody

Chris – your doctors are absolutely right in their explanations and they are (to my quite educated mind) absolutely correct with the diagnosis of labyrinthitis in your case. What they did not do – they did not explain you, that this illness does not show up in ANY TESTS including CT scan, MRI, blood tests, etc. Your doctors, probably, did not explain you, that patients suffering from labs all have sometimes HORRIFYING AND VERY SCAR symptoms (you have many of them). That is why MOST of the patients are sure, that they have some deadly disease that they are going to die from very soon. These strong and scary symptoms causes bad moods, feeling hopeless and/or panic. I personally was so scared when I got labs for the first time at age 20, that I cried and said farewell to my life and just prepared to my funeral. I gat that first bout from hepatitis A virus, that affected my inner ear – and I was diagnosed of “viral labirinthitis caused by hepatitis A virus”. And guess what – I was totally dizzy-free, healthy and happy after 7 months…. I was OK and happy, and productive, and never dizzy for 19 years (not bad!). At age 39 being married, mother of two and PhD in material science I got another bout of labs, which evolved into BPPV from another viral infection (hepatisis B that time). What an unlucky monster I am…..The second bout lasted for about 5 months. Then 4 years – happy and dizzy-free. At age 43 after moving from Russia to the USA (stressful time!) I got a relapse of BPPV and secondary endolymphatic hydrops (“dilated” Meniere’s). Very ill for more, than a year. Cleared up for about a year, relapse again for 6 months. Then - for long 5 years I was absolutely healthy and happy. Starting from November 2003 I have been having dizzy spells, imbalance, horrible noise sensitivity, agonizing headaches, I lost my great job and have been having all kinds of anger, frustration, hopelessness and still is feeling uncertain about my future. But guess what – good news!!!! – I am feeling much better as compared to …a year ago. So, even in my really bad case THERE IS HOPE!!!! EVERYBODY, including Chris, - I do not want to look very depressing on this website – I AM THAT BAD STATISTICS when viral labyrinthitis (viran neuritis) unfortunately turned (evolved, regressed) to worse things (BPPV, endolymphatic hydrops, and perilymphatic fistula , which my ENT doctor also suspected). By the way, my ENT doctor with a lot of practical experience said, that I am the worst case and the worst scenario, that he had ever seen in his practice. Thanks, dear doctor…. Everybody – do not compare your case with mine. Hope, you will never regress down to my level (although, I am not going to die – on the contrary, I am surely going to improve further!!!!)

Hugs,

Anna


Chris - I'm at the 4 month mark and anxiety is terrible as well. I've been told that long after labs has gone the anxiety can be the thing that lingers on. I have dreadful panic attacks (mainly in the evening) and can't ever imagine my life getting back to normal. Like you, I feel really sad sometimes but keep telling myself that it's just an ear infection and it will go. When, is anyones guess though. I desperately want to go back to work as pay will be halved at 6 months. I know that going for a walk in the dark helps compensation as the brain can't cope with the dark. Also, I've bought some tennis balls as these do help with the eye jumping if you throw them back and forth either to someone else or against a wall. I've had a few good days but they are always followed by bad. Hopefully the good days will outweigh the bad soon. I take magnesium and B Complex to help with the anxiety as recommended by ENT specialist. I've just come off SERC (Betahistamine) and I'm feeling quite sick most of the time now. Had to come off the tablets because they were stopping me compensating.

Chad - My neck is stiff which has caused numbness and tightness in my left hand (side of labs damage) and also the left side of my body. Sometimes I have pins and needles down my left leg. I also have trouble telling hot water from cold in different parts of my body. I've had brain scan and Xrays (when first diagnosed) and my GP says if there was anything to worry about with my joints it would have shown up in the scan. She isn't worried about it but when I have a panic attack my muscles tighten up.

Keep fighting both of you, we WILL get better and have a fantastic 2006 very soon.

Frances


Chris

I have had this for 6 months.Dont worry so much and dont be so anxious....it will pass.Once you acceptyou have it and dont freak out about it the anxiety will go.Also dont put a time limit of 6 months on this.Time frames just put pressure on you to get better and bums you out if you dont.I thought I wouldbe better after 3 so.. Everyone is different you could recover tommorow!!just try to put it at the back of your mind.

Believe me having this has been the toughest test of my life and I have hated my existence at times....but mine is improving with exercise and treatments.

Good luck and dont let the bastard defeat you...defeat the fucker and rule the day!!

Deus


Chris, I hope you are feeling better - I can say that I am recovering very slowly and more like 2 steps forward and 1.5 steps back. Lately, I've been going a few days at a time feeling ok enough but then I'll feel bad a day or two and get very scared again. I do have some days when I feel very good. Yes, this is anxiety inducing, depressing and nerve-wracking. Have you been working on learning to stay calm? Deep breathing, plenty of rest, diet, etc? You are not alone.


hey

thanks you all for replying. i wrote that last post when i was really down at the time and as the rest of you could understnad it was just a low spot. today im feeling alittle better. ive noticed some changes where i can feel real good without any type of meds and just have like little head rushes that last for like 5 seconds and go away. sometimes at night it will feel like my bed is moving but then i will switch positions and it will go away. my only question/concern is this.....i know there is a diffrence between damage and permanent damage and i know that some people can have this for a long time and not have permanent damage but like alot of other people i go online and look at everyones stories and of course assume the worst. i called my nerologist and asked him to be specific as he could about my eng results. this is what he told me. he said that the concern was when he put the hot/cold water in my ears that my left ear really didn't respond to it and neither did my right but my right ear showed more of a weakness than my left. i asked him if i had to worry about any permanet damage and he kinda laughed and said no..once this heals you will be fine. just keep doing excersises and i should get better. now ive heard that some people don't respond to the water test and still have a good inner ears. im just confused about that. anyways....thanks for the concern


once last question. when i look up labs or vn they usually start with spinning and nausea. I just wanted to say mine starting as lightheadedness and got worse. anybody else like that? how did everybody's start? if yours started like mine did it peak and then get better? im very confused. ive been told by docs that mine was viral infection and it takes time to heal so that would point to labs or vn. just curious


Hi Chris,

My Labs started with lightheadedness and dizziness, never violent spinning and nausea. Moved on to feeling off balance 24/7 and then the anxiety kicked in. I never had any deafness at all, though I did have uncomfortable feelings in my ears. I am at the 10 month stage now and am fine apart from a slight off balance feeling some days, this thing is getting much better with time.

Anna, I feel so sorry for you. I hope that once this illness goes it never comes back for you, you have suffered so much. I have been reading your posts for the last year or so, since my first attack and find them to be very helpful and supporting. I know you have good support from your husband, as I do, and think this is half the battle if you have someone who cares enough to help you through it.

Take care everyone.

Sandie x


Hi,

I've never posted a comment to this site before but I could really do with some support.

I have been feeling dizzy constantly for the last 18 years since I was about 10 years old, I am now 28! The kind of dizziness I have is what's been referred to as 'brain fog' or being 'detached from reality' I have been doing the Cawthorne Cooksey exercises recently but I am just having doubts about whether these will work or not considering the length of time I've had this. Can anyone convince me?

I've been getting so depressed about it recently, I'm really struggling to concentrate and focus on things and don't really feel like any of the doctors I've spoken to quite understands what I'm trying to explain.

I also have a lot of tinnitus constantly but it is just the brain fog/lightheadedness that's really getting me down.

I've read some of your comments about taking Ginkgo Biloba and Lipo-Flavonoid tablets so I might try these aswell.

Sorry to sound so negative I just don't feel like I'm ever going to feel better.

Louise


louise....i think u may have to check into anxiety 18 years straight is a long time....has it been off and on or just straight through 24/7 or does it come and go..... my results when i went to the ENT was my left ear was fine my right ear didnt respond really...but ive had this twice before but not for 1 year like i do now...it was 1 year yesterday ive had this but i am feeling alot better still alittle brain fog but im running on the treadmill now drinking on the weekends.....just the spacey head feeling dragging and alittle tired more than i used to...


Hi, everybody

Louise – I have very strong ANGRY feelings about your situation. 18 years with IT and no help and no even clues (wrong – maybe, some clues) Help yourself, read as much as possible about “dizziness”! I can recommend a good rather new book “The consumer handbook on dizziness and vertigo” edited by Dennis Poe, MD. I bought it on Amason.com for $30. It’s worth it. Louise - by any classical definitions IT is not labyrinthitis. It does not seem like classical BPPV as well. You certainly fall under the category “chronic dizziness” (lightheadedness, sense of detachment from reality and even “brain fog” are considered as forms of “dizziness”). Constant sense of lightheadedness, or some kind of “motion in the head” can be from the vestibular system, or from the brain. You said, that you have tinnitus - this symptom rather shows vestibular problem plus audio nerve involvement (VIII cranial nerve). Tinnitus plus constant dizziness can be a sign of endolymphatic hydrops (imbalance between endolymph and perylymph in your inner ear).I am just throwing ideas. In case of this imbalance - diet concerns is extremely important. What are your self-observations about salty or sweet foods affecting you? In any case Lipoflavonoids and Ginkgo Biloba will not hurt (both taken on a regular basis). One more thing – SSRI’s (serotonin inhibitors like Paxil, Cipramil) proved to be useful in some patients with long term constant dizziness. Why not give all of the above a try? Do you have anything to lose in your situation, Louise? Exercises…. I have doubts… because you have been doing all kinds of exercises NATURALLY during those 18 years. Sandie - thanks for being sorry for me - it is so touching. Actually, very few people feel that compassionate, because I DO NOT LOOK ABNORNAL. On the contrary - I look just fine... "ONLY" I do not work, do not drive, do not go out.... Anna


Hi,

Chad - yes, it has been pretty constant for the whole time. I don't know if that's a good thing or a bad thing. It hasn't got better or worse, it's just stayed the same. I have had other symptoms that have come and gone though such as falling over when I get out of bed and spells of vertigo when I turn my head in bed but I haven't had these for over a year now and I never used to get them before then.

Anna - thanks for the book suggestion I will definately look out for it. I think I have noticed I feel a bit dizzier after eating sweet food. I don't eat many salty foods like crisps or processed food but I do have quite a sweet tooth. I like sugar in my tea and I really like cake, I like to have a little slice after my tea every day but I have been trying to replace it with fruit recently.

I sometimes wonder if my dizziness might be to do with a history of ear infections from when I was very young. I also fell into the bath head first one day while I was playing with my sister (it really hurt!). I was too scared to go to the doctor when I was young as I didn't know how to describe how I felt. I did go when I was about 19 and asked him if it might be to do with the ear infections I'd had in the past and he said probably not and that it was more likely to do with depression and sent me to the psychologist! I knew I wasn't depressed and so didn't really have the courage to go back until just over a year ago to a different doctor who referred me to the ENT clinic.

I will try the SSRI's aswell. No, I don't think I do have anything to lose. I've lived with it for so long I almost don't remember what it's like to not feel dizzy!

Thanks for your replies. I feel so much better knowing others have gone through this and it isn't just me going mad!

Louise


hello all

well im sitting in my towns college library and on no meds so i think that s agood sign that im doing better. im alittle anxious and alittle off balance but im doing better. im waiting for my girlfriend to get out of class. its amazing how when you get out and go on with life or try to despite feeling weird how normal and good you can feel. it almost seems like not too long ago that i was here and didn't have this inner ear thing over my head. i recieved an email from a friend that had an inner ear infection and was writting to lift my spirits. he had labs and was really sick for awhile. he said once he reached the 4 or 5 month mark he was starting to feel alittle better and then by month 8 he was back to 100% he told me that no matter what that he promised i would be back to normal again soon. now ive been told that by doctors...but to hear that from a guy who actually went through this it was nicer and easier to listen too. now hes riding roller coasters and has been dizzy free for about 3 years. im just slowing trying to start doing things that i did before. im a singer/songwritter and i have a band and for the 1st time in 3 months we played in my basement. before when i 1st got this i would be falling out of my chair during band and yesterday i felt alittle off but i was enjoying it. some of my band members haven't seen me in a couple months and commented on how better i look and what a diffrence they saw. always good to hear.

Deus....how are you feeling man? doing better? your about a month ahead of me so hopefully your moving right along. what kind of excersices are you doing?

one last thing. how do you know or how can you tell if your infection turned into bppv? i heard that it can turn into that and recently ive noticed that when i lay down and sometimes when i turn i feel the bed moving and if i lay in a diffrent position i feel better. ive never had the true spinning stuff and i was told that bppv was spinning.

anyways...hope everone is doing better. if you go back to the older pages in this you see alot of people who posted often and you don't see their names anymore. thats got to be good.


Hi chris

I must admit I am doing very well this past week.My dizziness seems to have improved greatly.I even had a cold over the weekend and it didnt affect it.On monday I almost felt 100% my normal self, not so good the following day, but for the first time I could see an end to this thing!!

I am still off work and will be for a while till I can kick this thing 100% Ive worked too hard on trying to beat it to let it come back.

I believe my improvement has come due to a combiantion of Acupuncture, Cranial Osteopathy and cycling like a madman daily (the best form of VRT).So if i keep this up and dont get a relapse (which is always possible with this damn thing) I should be ok!

However always be prepared for relapses, they are a real bumout when you think you have almost kicked it, but they pass quickly and you will be back on track.

Hopefully like your mate who was 100% after 8 months shall i be too!

Lets hope.

Deus


Hey everyone. Month 7 has passed and I feel like the vertigo is about to come but yet it doesn't. When it feels like its about to happen I stop doing whatever it is and try to relax, but then I get a slight headache an hour later. I find that when I look down that I don't feel dizzy but the longer I keep my head up I get the feeling of dizziness. Also I find myself very tired now. I hate taking the trains and buses because I feel sick, but I still take them. I talking to my family about how I feel b/c they won't understand anyway, how could they its not like they know what it feels like. The good news is that the foggy spaced out feeling has left a couple of days ago but it made me, in an odd way, more aware of the dizziness. Well I guess I can look on the bright side... my ent said in nov that whatever I had I was in the last stage, my blood test in Oct revealed nothing,and my heart exam revealed that I had a healthy heart. Overall i'm healthy but this ear problem is fustrating. I can't wait to my brain compensates. Do you guys think that by becoming more dizzy that my brain is compensating?


corey why did u have a heart test did your heart beat alot when u had labs...???? especially after doing little effort u can still fill it pick up pace??? i have the same feeling


hello

glad to hear your doing better deus. one thing...whats Cranial Osteopathy? do you still have bad anxiety? thats still really bad for me. some days im ok and some days im really bad. i still keep thinking that this is something more serious. the only thing im doing is trying to eat good and vrt. this month ive been feeling alittle better. i need a break from this.


Cranial Osteopathy is kind of massaging the scalp.It is meant to improve nerve connections to the ear and is used in the treatment of dizziness.I dont really get much anxiety anymore thank god.You will improve, be patient however and know that it will end.


hello again

im finding it really hard to concur this anxiety and stress. i know that im starting to feel better and im having good days compared to others but i worry about every little thing that comes up. what do you guys do for anxiety? my doc gave me xanax but im kinda scared to take it cause i hear that it can interfear with how soon you get better.

deus i came across that yours started with no actual room spinning. how did yours start. mine started just lightheaded like i had low blood pressure and then turned into heavy head and just an off feeling then after a trip to seattle turned into floor moving and bad anxiety. im starting to notice the floor doesn't move as much and im getting breaks in the light head. the heavy head part has been done for over a month and i don't feel to much in my ears anymore.

anyways i hope everyone is doing good. take care

chris


Louise, - I have been thinking of your situation. You definitely should visit the following website http://p081.ezboard.com/bdizzylounge with a very good support group, you can register there and post your story on their message board. You will get many HELPFUL responses from people who are going through similar long-term dizziness as yours and mine. Actually, I do not recommend this site for those who are having labyrinthitis for the first (and hopefully, for the last time!) in their lives. Louise - visit that support group – and you will see, that you are not crazy, and not imagining your symptoms. Your symptoms are REAL and YOU ARE NOT ALONE. There is an active and a very smart guy there, whose name is Rick, who had IT for 22 years. By watching and observing himself very closely for a long time he understood, that his dizziness was caused by …sweets. He is feeling MUCH BETTER now when he eliminated sweet and sugary things from his life.

Update on my situation. A am DEFINITELY GETTING BETTER and better!!!! In the morning we had a trip to Tulsa 80 miles away from our town (for the first time in a year and a half!). My husband drove me to a Social Security neurology doctor for her conclusion if I am really disabled and cannot work. Not only I survived the trip, but for several moments I felt almost OK. (I am knocking on wood!!! – the Russians have the same prejudice, or habit – people are so much alike everywhere in the world – Why do they fight?!!!!). By the way, she said, that I am definitely disabled by the condition , that I deserve benefits and that she will report to the SS office about her conclusion. Guess what – I do not care about their benefits, and all money in the world…. I am happy, that I survived the trip and that I was feeling MUCH BETTER, than a year and a half ago.

Everybody – hold on. We shall overcome some day!

Yours, Anna


LETS GO STEELERS!!!!!!!!!!!!!!! PITTSBURGH, PA CHAD


Hi Everyone, I've been scanning the messages from 2004 and it seems as though my symtoms are a bit different (correct me if I'm wrong). About 5 weeks ago, while blowing my nose, I heard a "pop" and suddenly the hearing in my right ear was gone. Instead I have a steady noise like a running faucet. I've been to an otologist/neurotogist who diagnosed viral labyrinthitis and told me that the nerves in my ear were damaged. I have some unsteadiness which seems to be improving but the lack of hearing doesn't. I'm able to work and drive but noise (I'm a teacher) is a problem. I'm unable to tell where sound is coming from and have trouble understanding my students unless they are speaking directly toward my left ear. I am also a ballroom dancer and haven't been able to dance much because of the fear of falling due to the dizziness. My children think I should go to an acupuncturist and I read some information posted earlier which indicated that it may be helpful. Also, sacral-cranial therapy was mentioned. I would really appreciate any advice on these therapies and anything else which might help. Thanks, Rich, for this site and all the postings.


hello

i read that when you take an eng test that you should not eat or drink for a couple hours prior to taking it? does anyone know why that is? can it interfere with the test or results?

one more thing....has anyone that taken the test when they put the water in the ears and look for eye movements? now from what i understand that if you don't respond to it that means you have problems in the ear. the reason im asking this is cause i was confused on my eng results and was told that my right ear was weaker than my left but the test showed that i didn't get a responce from the warm and cold water in either ears. what exactly does that mean? i asked the doc and he said that its nothing serious just do excersises and i will get better just takes time. i asked him well what if it doesn't? and he replied by saying if it doesn't than to come back in a few months but he said that he is 100% sure that that isn't my case and i will be better. im still alittle confused on that. do they caloric responces return to normal after recovering?


Chris, thought you would be interested in this as explained to me by VRT specialist.

The vestibular system controls our anxiety/depression levels so an increase in these in vestibular sufferers is normal and only to be expected. Plus the problem of having to deal with the disorder.

The vestibular system filters and fine tunes all sensory information entering the brain - light, sound, motion, gravitational energy, chemical information, air pressure, temperature. It is responsible for controlling and fine tuning our vision, hearing, balance, sense of motion, altitude and depth, sense of smell, sense of time, sense of direction and anxiety/depression levels as mentioned above. Therefore any of these processes may be affected when suffering from inner ear dysfunction which accounts for all our terrible anxiety and panic attacks.

Hope this helps you/others.

I'm getting a grip on the panic attacks now but always seem to have gripping pains in my stomach which I'm sure is due to the stress of it all. No sign of me getting back to work yet. I'm sick of this illness - just started week 17.

Frances


Hi, everyone

I can see that diagnosis Labyrinthitis is becoming very popular among doctors, and sometimes they diagnose people with it even if patients’ symptoms do not really match the symptoms of true labyrinthitis described in recent medical literature. For example, LYNN, whose symptoms of hearing loss and imbalance/dizziness appeared after she blew her nose and her ear “popped”. To me (I do not pretend like I am a doctor – I am not - but I read about symptoms of ALL inner ear disorders) it looks much more like perilymph fistula, or perilymphatic fistula PLF which in Lynn’s case happened as an injury from the excessive air pressure during nose blowing. Unfortunately, it happens sometimes. Lynn – look very attentively at the following site with the description of PLF fistula symptoms: http://www.emedicine.com/ent/topic234.htm

It makes a BIG difference whether you have labirynthitis, or PLF. In true labyrinthitis, you should not restrict many physical activities, because they help to restore your normal balance (to compensate). On the contrary, if you have a PLF (actually a tear in perilymphatic membrane (do not mix it up with an ear drum, look at the anatomy of the ear!) many strenuous physical activities should be restricted because they make this tear bigger and your symptoms worsen!

Chris – you should NOT eat before ENG test just because you can get very dizzy during any step of the test and REALLY SICK to you stomach. They do not like to tell about this possible “side effect” because they do not want to scare people in advance. Chris - it looks like you did not have so drastic response to ENG. They told you, that your caloric test “response” was weak, so they scared you, that you have “damage”. Twice in my life (in 1995 and in 2004) during the worst of my bouts of an inner ear disorder (labs/BPPV/PLF, or whatever it is) I had ENG tests. Both times my caloric test showed big “over-response” on my left ear (I was spinning and almost threw up several times especially after irrigation with cold water. According to conventional view if I showed over-response – my balance system should be “very strong”. But in reality in 1995 and 2004 I was very dizzy 24/7. By the way I was absolutely NORMAL and dizzy-free from 1997 to 2003. My question is – what does ENG shows and what does it prove??? I asked the same question different “SPECIALISTS” – neurologists, neurotologists, ENT doctors - they DO NOT KNOW. So, excuse me, dear doctors, I am NOT GOING to have any ENG test again. Sometimes, I really want to ask those happy dizzy-free doctors to go as volunteers for a couple of ENG tests – I wonder what their tests will show (just for statistics…)

Yours,

Anna (really frustrated with doctors!)

P.S. Rich - Thanks - you organised all five pages and a link to Emma's website so nicely!


Everybody - pay attention to the following home webpage of VEDA (Vestibular Disorders Association). It is excellent!: https://vestibular.org/index.php

Anna


Been reading the posts on this site and others for a few weeks. Thought Id share my story. In mid december, I was at work and just didnt feel too good around 3pm. Thought I may just be tired as I had been working long hours and out late at night for the past 45 days straight. Sleeping maybe 4-5 hours a night. Around 4:15, I felt extremely dizzy and that I was going to faint and I MUST lie down. I did for about 10 min and then went back to my desk, still feeling really bad. I sat at my desk for about 5 min and that feeling of imminent faint got stronger. Again, went to lie down, this time, my heart was racing. Managed to leave work around 4:50 and lie down in my car for about 1.5 hrs. Still not feeling good. I got a ride home and went to the doctor the next day. I was told it was stress and I just needed some sleep. I took the next couple days off from work and seemed to feel a little better. Went back to work and as soon as I sat down at my desk, I started to feel panicky. Left work and had lots of bed rest the next four days. Again back to work, and again I had to leave as the dizziness and the panick was too great. Went to another doc and was told it was an inner ear infection and it should go away in about a week. It didn't. Took about 3 weeks off from work and had most of the sypmtoms as everyone else-dizzy, blurred vission, panick, fatigue, swaying feeling, feeling like im gonna faint, spacey head a lot of the time, no loss of hearing, no tinnitus. Leads me to believe this is vestibular neuritis. I managed to work 13 of the last 15 days of work, though I have avoided long conversations and remained pretty quite which is uncharacteristic of me. I find that sitting at my desk and staring at the computer makes me feel worse. I also find that I feel worse after lunch, which im curious if anyone else has found this to be their case. The last two days have been the worst of the last 3 weeks and I am getting very frustrated and scared. I have always been a very healthy person. I havent had the flu in years. I did suffer from abnormally bad seasonal allergies a few weeks prior to getting this. The toughest thing is not knowing if Im gonna have a good or bad day as everydays seems to be different. I do feel better than I did when this all started. I have tried to stay off any kind of medication, just meclizine if I really need it. I had daily headaches for about the first month-not too bad, but persistant. I would take Tylenol or Excederine dayily. They have since subsided as has the tightness around my head, although I still feel it a little on my bad days. I did feel dizzy seeing items on shelves in a Walmart about 3 or 4 weeks ago, but I can tollerate it a little more now. I do drive short distances, although I don't feel safe yet taking someone along with me - in the car that is. I just want this to end and hope my girlfriend will be understanding and patient with me through this. I feel my best when Im with her. I miss how I used to be. I know my thoughts here are so random and not in any order, but I really dont feel like organizing them right now.


anna thanks for the info. that stuff never made any sense me to me and even when i ask the doctors they couldn't really tell me what the hell it meant. just that i will be ok in a few months. they did scare me bad when they told me that and i don't know why cause i didn't even know what it meant. im a type of person who needs to know everything about whats going on and if i don't i either assume the worse or go crazy trying to figure it out. anyways.....any other eng stories?

as for me im on month 4th and im seeing great improvement. i still have times where i feel weird and off but they come in bouts now. nothing true spinning (i never had the true spining) it just comes and goes. i actually felt 100% yesterday for like an hour and a half. i did some dancing!! well my girlfriend comes home today from boston! can't wait to see her. without her i would not have made it this far. when she left she even wrote me a letter saying that im going to be okay


VN I THINK - I also think you have viral neuritis/labyrinthitis. If it is clearing up slowly and gradually even with "ups" and "downs" - everything will be all right! Anna


hello

just wondering how everyone is feeling and doing. im still having some ups and downs. im feeling really lightheaded sometimes. its hard to tell sometimes if your doing better or not. if i could just get pass this really bad lightheaded feeling than i would be ok. anyways just checking in. hope everyone is well


Well I took myself off to London for a trip on a train last week as I thought I could cope. First time out alone for 4 months!!! I've been paying for it ever since and feel as if I've taken a huge step back. Spinning vertigo is back and I feel as though my legs are being squeezed when I walk. I think its all to do with trying to keep me upright. Neck is tight and painful again with electric shock feelings in my arms. I keep telling myself that it will all go when the brain has compensated and there won't be the stress on my muscles but its hard to stay upbeat when it all seems to be getting worse. I'm doing my best to not worry but have constant stomach pains (due to the anxiety of it all). Hopefully this 'bad' patch will go soon and I'll be ready to take up the fight again. My lovely husband seems to be the only person who is constantly supporting me through this. Family and friends don't really understand (and why should they), it's been going on for so long now. I miss the socialising so much but can't really sit for long because of the visual problems which really are freaking me out. I did manage to read over 50 pages of my book a few days ago though which is quite an achievement since I've had to rely on audio books for months, so I suppose some progress has been made. Hope you are all getting on okay. Chris, I don't have the lightheaded feeling, my head is more like lead. When labs was really bad it felt as though something was inside my head pushing and pulling it back and forth!!

Frances


Chris

Anna is absolutely correct- if you are having ups and downs and IMPROVEMENT you will shake this in the end.Anna is a veteran of this condition and has shaken it before-so shes knows whats she is talking about.

I understand your impatience and 'if i could shake this ligtheadedness I will be ok' thoughts.

I had exactly the same feelings.I have just done 6 months and am heading into month 7.I have seen some good improvement in January.Yes it has been up and down-this is the nature of the beast-but it is improvement all the same.I feel I should be completely in the clear in several months.

I have realised patience and perserverence are key.I WILL RECOVER FROM THIS-I AM TOO DETERMINED.

Deus

p.s ANNA-spasiba za vsyu vashei sovyeti-ochen polyezni dlya menya.


Frances,

Would you mind explaining what your "visual problems" are? I have a few weird vision things as well and just wondered if any were similar.

Thanks, Michele


Hey guys - especially VN - as i feel mine started very similar to yours...

TWO THINGS:

Do a adrenal SALIVA test...not the ones the normal GP does but a more definate one that a nutritionist would do...

Im getting one done this week..

I went to see a nutrionist as i figured maybe it might be intolerences to food..

I might have adrenal fatigue and candida(more in girls)

I am off yeast and sugar and dairy..and she has prescribed me health supplements that arrive this week..

It sounds like a mission but its only for a couple months to see if the dietary changes and supplements help, and then to get the yeast out the system..

Explained more here: http://www.iwdl.net/home.htm

I just felt i needed to do something as i get quite tired and faint and thought it could be more than labs..

Adrenal fatigue & candida can give you similar tired/faint/dizzy symptoms especially certain times of the day..

Deeee


Michele

Since this all started my vision has been the worse aspect of it. It's called nystagmus and the eyes visibly 'jump'. I can only read at certain times because everything is moving. It's like looking through 2 different lenses that are both wrong for my eyes. Sometimes its as if my eyes overlap, if you get what I mean. It is slowly getting better though. I do lots of 'gaze stabilisation' exercises which help and I'm getting to grips with the supermarket now. I go for lots of long walks (up and down hills is very challenging and makes the brain work harder). I haven't worked now for 17 weeks but am hopeful this awful thing will go eventually. Hope you and everyone else are having a better time of it this week.

Frances


Hi, all

Rich - you arranged links to very informative and helpful vebpages like VEDA association and Dizzylounge!!! Very nice of Rich. Thanks again.

Deus - you skills in Russian is good. Говорите по-русски! When I read everybody's posts and watch so many people in their recovery process - it is a great deal of information about this illness. It is ALSO a big support for me in my long way to better quality of life. Frances - your trip to London alone - TOO MUCH and TOO SOON. For a long time I was sure, that such kind of "too early and too loaded" attempts to get out were not harmful. I thought, that they were only painful emotionally if I did not "pass the test". Now, I somehow think, that in fact such attempts produce quite a setback in your recovery process. Now I am a little more CAREFUL.

Anna


You're welcome, Anna.

It looks like it's probably time for a sixth page!


It seems to be so hard to diagnose these problems... My wife is into day 3 of an 'event' which started with some 'dizziness' and a blinding headache... Just back from the doctor who called it VL and said it should clear up entirely within the next 5-7 days! Yet after reading page after page of this, that does not seem to be the usual prognosis... She has had a bit of neusea but no vomiting, just the debilitating dizziness and headaches... I am, of course, concerned and worried and my hopes and best wishes go to all of who are living with this...


Went to see a new doctor on monday. Did more blood tests. Still waiting on the results. This last weekend, fri, sat, sun were really bad. I was dropping weight really fast, as my appetite is gone way down. Been feeling really lightheaded, faint, and weak. From monday, I started making an effort to eat more and I have noticed I am not as weak. The lightheadedness, which makes me feel like I may faint, has been coming in bouts. Feeling ok for a while and then not too good. Scary. I have the vision problems i think Michelle was mentioning. Seems like my eyes are straining to see clearly. Causing a headache but not too bad. The dizziness is only coming when I get lightheaded and feel I may faint. My vision will start to blur and Ill start to feel a little dizzy. I find that standing for too long also makes me faint, even sitting up for too long, and so I lie down when I feel it. I have been making an effort to jump in place, roll on my back, anything to keep my head moving and force myself to tollerate it. May seem funny, but Im low on ideas as what to try to force myself to get through this. I just ordered Vertigoheel. Wonder if anyone else has tried this and what their experience was. Also wondering about the success stories. Is there a page of them as I am new to this problem and this site. Also, read about jayjay and Carbo Veg. Anyone have any luck with this?


Thanks for your comments Anna and I hope you are having a good week. I'm between the devil and the deep blue sea really. My GP hasn't given me any useful advice at all over the months so I've decided to change. All info I've got from the internet (sites like this). I saw ENT specialist before Xmas but wasn't given any exercises, just a referral to VRT clinic for tests which I now hear will be in 10 months time!! My boss is visiting me next week with a trade union rep and staff welfare officer. The pressure is on to go back to work but it's out of the question. Really difficult with my job, which I can't afford to lose. It doesn't help that I look so healthy.

Hope you are all doing okay out there in 'labs world'

Frances


Steve - immediately about your wife ( I have an idea - a guess). VL is becoming DIAGNOSIS OF THE YEAR. I doubt it regarding to your wife. Her dizziness started with "blinding headaches" which can be migraine. On the contrary "blinding headaches" are not something in VL symptoms. What Steve's wife had (I hope it got better) could be MAV (migraine associated vertigo). MAV is also diagnosis of the year - fashionable among doctors... From practical point of view - Steve if you wife do have MAV she could benefit from such anti-migraine drugs as Imitrax, or Topomax.


hey

how is everyone doing? ive had some setbacks the last couple days an dits getting me down. its not so much the floor moving now its just really bad lighheadedness. anyone have that as a main symptom? i went to walmart and was walking so fast trying to get out of there.

deus....how are you feeling?


Hi

Well Chris this week it has been up and down and naturally frustrating me, as I was having such a good period.However this is the nature of the beast and you just have to bare with it.But I am still better than I was last year.Pressure is on to return to work too.The way I see it I cant wait all year for this to go so I will just have to push on.I just pray it is gone in the next six months.

Deus


VN I THINK – From my personal experience (I am a VETERAN, unfortunately) – DO NOT FORCE yourself to shake IT off, do not jump, roll over and other forceful movements. Vertigoheel – it even sounds awful! You can make your problem WORSE. Remember – you have some kind of INFLAMMATION (key word) going on in some structures of your inner ear and /or your head (cranial nerves). Be careful with your head for God’s sake!!! Let the disease take its course naturally! Eat well balanced food with a lot of proteins and vitamins in smaller portions but in shorter intervals. Actually force yourself to eat this way – you yourself admitted, that it makes you feel less weak. Take multivitamins, especially B – complex, Ginkgo Biloba – people say it helps – on a regular basis. Success and feeling better stories - http://p081.ezboard.com/fdizzyloungefrm35

Frances – you are DISABLED (I know this better than anybody!!!) but you have to CONVINCE your “reviewers” – including doctors, bosses, social security workers, trade union reps, or whoever is responsible for your disability benefits – that you are really disabled with this illness. Do NOT DIMINISH your limitations and sufferings. Say – I CANNOT: drive, use public transportation, work on computer, cook, clean the house, barely keep myself upright, barely walk grabbing on walls and furniture, constant headaches, constantly nauseated and vomit frequently, your sleep is poor, you are badly depressed, you easily forget things. Refer them to VEDA association Website. Explain them, that you have been making a lot of research in desperate hope to help yourself. Explain them, that this condition is poorly understood, and no tests show the degree of your sufferings. And the worst thing – medical science does NOT HAVE any REAL medication or REAL treatment for your condition. This condition is RUINING your life – it is not life-threatening, but LIFE-ALTERING. Nobody is able to make ANY PROGNOSIS. But as you know from other people’s experiences - it CAN subside and even GO AWAY with TIME and REST. When this happy day comes - you will be EAGER to return to work (for your boss – if you want to keep this job). So, Frances in other words - You have to be prepared to make a short but convincing PRESENTATION on your condition (as you cannot expect, that anybody, including doctors, knows how you FEEL). I have made already several of such “presentations” for a couple security workers and insurance company reviewers (they admitted, that it was “convincing” and absolutely “new knowledge” for them). Many doctors GP and even ENT and neurologists also need some kind of “presentation”. Of course, you should NOT BE RUDE to them – no way! but you have to be quite persistent in BEING YOU OWN ADVOCATE. (Not an easy task, I know, I am always is quite stressed doing this)

Update on my situation – I am still waiting for approvals (or rejections) of two claims on long-term disability benefits – from social security and from my former employer’s insurance company. They are not in a hurry to pay benefits…. I am not going to worry about money issues, though….

I was composing and printing this post for a couple of hours (I am very slow, took breaks several times). Still I am not as much disturbed by computer screen, as I was, say, half a year ago. Making a little progress in this direction also!

Take care

Anna


Hello all. I am so happy I found this site. I was diagnosed with a "virual inner ear infection" on 10/31/05. I was driving home the night before and got a severe dizzy spell and tinnitus. I thought I was having a heart attack or stroke, so I called 9-1-1 and was ER bound. EKG looked good, the next day I saw my Primary Care Physician and that's when I was diagnosed. Not happy/satisfied with that I went to see the following: Cardiologist/Neurologist/ENT/Audiologist/Vesitbular Rehab and here I am almost 4 months later still experiencing the lightheadedness. I couldn't sleep for the first month becasue I was so scared of what was happening to me. Since then I have also developed Panic Attacks that seem to come on whenever they like. After 3 months and several doctors it's all boiled down to this Virual Labrynthitis (MRI, Blood work, X-Rays all OK). I can't stand this feeling. I've seen some really good suggestions on this website that I will probably start doing myself to try and ease the lightheadedness/dizziness. The Anxiety is the worst part. I'm learning to accept that this is not going to kill me, however it has made me stronger. I am now in counseling for my anxiety and panic attacks and pray everyday for healing. My Neurologist said the symptoms could last for months. He said that the virus could have hit the nerve on the inner ear which causes the tingling I feel in my head/face and head pressure I get. It's pretty uncomforatble overall and has taken it's toll on my family. However, we are getting through it and I just hope that the recovery will come soon. I thought I was alone in this but now I see I am not. Thank you all for your stories/suggestions and advice and Good Luck to us all and our loved ones who experience this with us.

Matt TX


hey matt

how are you doing today? ive had this viral inner ear infection for almost 5 months now and am just trying to get through the day like everyone else. its nice to know that your not the only one with this and that its not something more serious. thats what always makes me feel better. i sometimes just sit and think about what its going to be like once it finally goes away. alot of people are 100% after 6 months and most are done within the year. just know that its getting better and that it won't get any worse. im at 5 months and i have some times where i can just lay there and think that im ok and all you can do is just sit there and enjoy it. also i started keeping a journal and writting down what im feeling and thinking that way i can mark progress. its hard to remeber everything you were feeling and thinking when it started. are you still having the head pressure and tingling? my head prssure and that kind of stuff ended in december so now im left with the lighthead and wozzy feeling. i hear that that is one of the last symptoms. if you do some research....don't do alot and get consumed in it causei did and all i did was scare myself....then you will find alot of people who had it and it left and never came back. i know some people too that had it for 6 to 8 months and it went and never had it again. its something that you learn to come and see that it makes you a better person in the end.


Anna

I know you have the best will in the world but I am certainly not disabled and everything you describe in your comments is how I was but not any more. I've come a long way thanks to Emma and Ilya's website (Labyrinthitis.co.uk) and this has been due to keeping active. The brain will not compensate otherwise. I know of a young lad who compensated in just one week due to vigourous rugby and he had 100% vestibular damage. I'm not ready to return to work yet but a presentation will not be necessary. I think I'm nearly 70% better but this has been due to my hard work and determination in compensating. I've noticed a great improvement in myself through keeping active. The virus only lasts for 6-8 weeks and the continuing problems are due to the damage done. I rested for the 6-8 week period and then it's been exercise/walks/shopping and a lot of will power ever since!!.

Thanks again.

Frances


Hey matt,

Thanks for the kind words. I'm usually OK for the most part but every now and then, particularly when I get up quickly, I feel like I'm going to fall down. I think my sinuses have something to do with it as well cause sometimes I feel like my head is going to explode, then it goes away. But overall I can definitely tell that I'm on the back end of it. I too get excited thinking about that day when this will all be over. And you are right, it definitly does change a person, for the better, and makes them stronger. Hope we all get over it sooner than later. Blessings all.

Matt


hey

hows everyone doing? im having some bad days. what is it that keeps this here so long. im going on month 5 now and while i see things getting better im still not feeling to good. im taking xanax only when it gets bad. its seems to help. ive heard that is bad. will that slow the recovry down? or is it just cause that xanax can be addicting? i stop myself from taking it cause i hear it slows reovery....but if it doesn't than i won't worry so much. its beena long 5 months


First, thanks for this site! I first read it about a year ago when I had my lab attack. It helped me understand what I was dealing with - although not too encouraging. Previously, I had had mild dizziness getting out of bed too quickly - nothing serious or lasting. In fact, this wasn't a problem for quite a while (years) when I had my attack "out of the blue". My head was resting on the back of a chair and I lifted it quickly and the room spun. Horrible vertigo, nausea (followed by violent vomiting), clammy and sweating at the same time. Facial muscles pulling down on the right side - the affected ear.Really scary- not sure if it was a stroke or heart attack - to me and my watching husband. I'm glad he saw it because so many of us don't seem to be believed. This is not anxiety or neurosis - it is physical as I had just gone thru a winter of severe sinus problems and I feel positive this is viral based. I wasn't able to walk or move my head for days and stayed in bed, afraid to move because it made me dizzy and nauseated. Finally, my husband took me to a doctor as it wasn't going away. Another week off work and no driving, but at least I could walk without falling over

Since then, vertigo bothered me when I would turn my head to the left without turning my shoulders (whole body) in bed, or when I tilted my head back. Somehow it is related to the neck movement. That has now decreased in intensity, but I still am nervous about quick movements - no more carefree movement of the neck for me. Recently, I saw an ENT who caused my blood pressure to go thru the roof. I was there because I continue to experience sinus and ear pain. She dismissed the lab diagnosis without hearing any description of the attack and said she couldn't tell me a thing about my ears because I hadn't had a hearing test! So the $300 visit was for nothing - I see that I'm not the only person to get that sort of treatment from a medical doctor. If you have a good one who is understanding, treasure them. I did get a hearing test and, sadly, have lost some hearing in the affected ear.

A year later, it's still there but I have adapted to hardly noticing it while unconsciously protecting myself by limiting neck movements. I have taken a long plane trip - no problems at all. I will not let myself feel that tiredness, fuzziness, ear ringing, etc. are cause for alarm. I don't want to credit those things to "lab" - truly, I'd rather just ignore them or think of them as part of the aging process. So, I have adjusted- the only thing I can't deal with is the possibility of it ever happening again: that attack out of the blue. Good luck to us all.


Hi

Frances - It is great, that you are getting better and better. I just think you misunderstand the word "disabled". In medical and Social Security (legal) terms it means that "a person is NOT ABLE TO PERFORM HIS OR HER WORK RESPONSIBILITIES" (are you able to perform you everyday work responsibilities? - you said, that you are NOT!). In our everyday life we are extremely scared of the word "disabled" because we understand it as "being severly, permanently and irreversibly crippled". In legal papers concerning your employeement the term DISABLED means NOT ABLE TO WORK. It has only TWO states: YES or NO (ABLE, or NOT ABLE, like 0 and 1 in binal code). No other grades in betweenthese two states (like "I am 70% back to normal", or "I am 30% disabled"). I did not even think of this, when I got very sick and was not able to work and my GP doctor wrote in my papers "disabled". I was extremely angry with him. I would say to my husband: "What a jerk my GP is - he put this label on me like I am not going to recover!!!". Not at all, Frances. My GP doctor just stated, that I WAS NOT ABLE TO WORK AT THE TIME WHEN HIS STATEMENT WAS WRITTEN. He made a good thing for me, because my employer DID NOT HAVE LEGAL RIGHTS TO FIRE ME FOR 6 MONTHS (my former employer's policy). So, I was on a short term disability for those 6 months. Unfortunately, I did not recover and was still @disabled@ (not ready to go to work) in the end of that 6 months. But it's another story......

Matt - keeping a journal of your symptoms (just very short notes) is a very helpful thing. I have been doing this for about a year and a half. Actually, it is never late to start it.

I am still getting better.

Hugs to all of you - strong people. Anna


hello everybody

how is everyone doing today? i myself am still feeling lightheaded and off but its not too bad right now. one thing i wanted to ask about what ive been reading up on these meds called SSRIs and i was wondering what they were. i read that they can normalize things quickly....or read stories on here also that said people got better after taking them? what exactly are they? and how do i get my hands on them?


Dear Anna

Thank you so much for your detailed explanation. I feel terrible about the way my earlier posting came across to you, after you spent so much time writing back to me. You're right, it was the word "disabled" that sent me into a spin!!

I work for the Government, so my job is secure but I'll be dropping down to half pay shortly which will be a problem. My husband works contracts so has been able to stay home and see me through this awful time. Hopefully 2006 will be a much healthier year, eventually.

I'm very happy you are slowly improving and I wish you a better week.

Take care

Frances


Hi everyone,

I have been feeling really good for about 5 weeks now, experiencing only very slight off balance feelings now and again. I have been a Labs sufferer for 15 months, though I have been back to work for over 5 months now. Even though I was back at work I did not consider myself to be fully recovered as I still have symptoms now and again but I really thought it was on the run as I have felt so good for the last few weeks. However, I have just had a really bad cold, totally blocked up, sneezing, hot and cold, and feeling generally weak, but I did manage to go to work. Today, I feel much better, my nose is not blocked anymore and I feel fine apart from the balance problems are back. I also have funny feelings in my head and feel like I am going to fall over if I tilt my head. Anyone know if this is normal? How long will it last? Any information would be greatly appreciated as I am terrified that it is back. I have also had slight feelings of anxiety today which I have not felt for months. Sandie


Frances - DO NOT feel sorry and do not apologize for being angry with me. I understood immediately WHY you felt so angry - for using this "horrible" word "disabled". Actually, I found out, that honest, responsible people like us, who have been working all their lives - they DO NOT KNOW all those legal words, terms and rules by which THE SYSTEM works. On the contrary, people who cheat, who just do not want to work and want to receive benefits - they learn those words, terms, rules very well... In any case - it is nice to learn more about our rights.

Chris - SSRI - serotonin inhibitors (well known Prozac, Zoloft, Paxil, Cipramil). They can be prescribed by your regular doctor if you complain on being sad, depressed, having bad sleep, fears (all of us with dizziness have these symptoms to some degree). It is really hard to give any advice "to try - or not to try". Of course, do not expect, that any of your doctors will give you any reasonable advice in your particular situation. Deside YOURSELF. Further are my thoughts about Chris. Let me ask you, Chris - Are you doing BETTER in comparison with, say, 3 months ago? Are you having those vestibular (inner ear) problems for LESS, than 6 months? Are you ABLE to leave your house without having a full blown panic attack (feeling like you are suffocating and going to die next moment)? I think, all the answers in your, Chris, case will be YES("better", "less", "able"). So, you stand a very high chance to improve further NATURALLY and to get rid of the disaster in 2-3-4 months for the rest of your life. You are just very impatient to become NORMAL... Just remember, that SSRI can bring side effects and you do not want them.


Anna, thanks for the advice on the journal. I try to jot down thoughts/feelings etc on a daily basis so I've kinda started that and I have noticed that the symptoms are subsiding. I've learned to laugh at myself when they come because I know I must look like a drunk to anyone watching me at the time. Things seem to be getting better by the day as far as the anziety goes, I still have my moments. I've noticed they seem to be prevelant on days that I consume refined sugar (hhhmmm).

I can't help but think about that there must be a common denominator amongst we sufferers of the dreaded labyrnthitis. Sinus problems...cell phone usage...q-tip users...? I don't know just thowing that out there to see what others might think. It just seems odd because there are alot of people experienceing it out there and I was wondering if there might be some connection somewhere. Then again it just might be the new vehicle syndrome. You know when you get a new car then you start seeing them everywhere. I don't know. Hope everyone is having an amazing, symptom free day. Blessings to all.

Matt, TX


anna

hey. thanks for the info. i think your right. im very impatient to be normal again. its been almost 5 months now and where i do feel like somedays are getting better....the next can be bad again. i do know that im doing things easier than what i did 3 months ago. i still have the anxety where im afraid to go out sometimes. its werid...sometimes i can....sometimes i can't. i went to go buy my girlfriend a necklace for v-day and i had to run out of there thinking i was going to die. i used to get those before i got this viral inner ear thing. im guess i will see how i feel this next month and try to keep moving day by day. my girlfriend just got this infection where she has swollen tonsils and she went to the doctor and they told her she has an ear infection. it was kinda werid cause we have the same doctor and he knows about me and what ive been through and when she was there he looked in her ears and stuff and hes like "well....your not going to believe this....but you have an ear infection. he said it was diffrent that what i have and he gave her meds and shes feeling better after just one day on them. but im going through hell cause im worried about her and i just can't take this health stuff anymore. im young so i guess i have to get used to that. im going to hold off on the ssris for now and see how i do. my neurologist said he has no doubt that its going to go away soon. he said it takes time for the nerve to heal and its just taking its sweet time for me. hope everyone is doing well.


Hi everyone.

I started with Labs last year and was off work for 5 months with it. I have been back to work for 5 months but do not consider myself to be fully recovered. I still have feelings of being off balance and being pulled to one side. However, I have just had a really bad cold and I was very bunged up and not feeling too well for 3 days. On the fourth day I felt much better, the bunged up feeling was gone, but I felt really off balance. The next day I was slightly off balance and today I still feel a little uneasy. Can anyone tell me if this is normal? I also feel pressure inside my head and if I am writing or reading with my head tilted forward I feel like I am going to fall over. I hope this thing is not coming back, I couldn't cope with it again.

Any advice would be appreciated, thank you.

Sandie x


Well Anna you have certainly spurred me on to stand up for my rights and get the help I desperately need (as a hard working wife and mother). I went to see a new doctor this morning who was very thorough and said I have vestibular neuritis NOT labyrinthitis. He examined me (balance etc) and then made a phone call to a neurotologist to get me seen urgently. I really do feel this is a positive step forwards and I'm taking more control of IT instead of IT controlling me. With regard to Friday's 'case conference' at my home with work officials. I've made all the notes I can Anna (thanks to your excellent advice) and I've found I can actually apply for incapacity benefit when I go down to half pay. Clever you!!! It's not the route I really want to take but my new doctor said I can receive this extra help and at the same time go into work and maybe do a couple of hours as and when I feel like it as this will help me to integrate back into the workforce - no pressure though and ONLY if I'm able.

I'll let you know how I get on Friday. Enough about me now, how are you feeling?

Frances x


Does anyone else hate being in the shower? I always feel a little "off" when I'm in there.


well its been alittle over 1 year now and its soo funny...the last few weeks ive been drinking running on the treadmill etc..and this week my legs feel like jello im shaking and tired but then next week ill be fine again....i hate this...but the whole time my eyesite is still spacey that never goes away....im hoping im coming to a end soon i cant take no more im getting sooo fed up.....when my right ear tested pos. for labs they said it may take months i never thought it would take years......


Frances – BINGO!!! And good luck on Friday meeting!

Michele – We all do not like showers, or just really hate them because dizzy people are more unsteady there (sounds of water, obstructed vision, slippery floor). Easy solution –purchase a plastic lightweight shower stool (or chair) in a local medical appliances store (or on-line). You will enjoy the shower again!

I am fed up with my computer – it crashes all the time… Good news on my improvement - I will post tomorrow

Anna


Hey guys::

Heres a great Article:::

http://www.sportsmediainc.com/tennisweek/index.cfm?func=showarticle&newsid=14142&bannerregion=

Famous aussie tennis player who has had it for a year now!

FRANCES -

Since you were diagnosed with VN - vestibular neuritis What is the difference between that and labs?? How did they conclude that?

Anyone else know?

This is a very slow process. I always thought that if you had a good day/evening out then youd be over it...

You know, you strive to get to that good day, and when you get there, the hard work has just begun!!!!

But, even when you start having good days/nights out...you can also have bad ones!

I have been trying to go into the office about twice a week in the afternoons,

Some are really tiring and take it all out of me, other days, its hard for the 1st hour or so to adapt and for anxiety to go away and then i am fine..

Its very up and down.

delia


cool article. one thing that gets me is why would her doctor tell her that she may never play at top level again? ok this thing can take a long time to get rid of but where did the idea of her never getting better ever again come from? people have recovered completly from far worse illness than inner ear infections and gone back to completly 100%. ive known people who ended up in wheelchairs for a year from a virus and is 100% now.


yeh its a real bum out that the her doctor said 25% of people never recover fully.I sure hope I dont fall into that bracket.As long as I'm recovered by the Summer I will be very very happy.I'm nearing 7 months of this now...but not sure I could handle a couple of years!

Deus


Hi, everybody

Delia - how was your blood test for adreanal gland weakness & candida?

Tennis player Alicia Molik - maybe her example will bring some attention to our mutual problem. There have been so little research done in the field of balance disorders (including labyrinthitis and viral neuronitis). Maybe, things will start changing....

The day before yesterday in the morning I slowly drove to a drug store located 5 min away from the house. It did not make me dizzy, because my mom who was sitting on the front passanger seat helped me to look to both sides. We managed to pick up prescriptions (myself - grabbing on my 85 year-old mother's hand - 4 legs together are better than just two either shaky like mine or old, arthritic like my mother's). We DID IT! Yesterday in the evening I slowly cleaned a big mirror in the bathroom, feeling unsteady and shaky, but I DID IT! I have not driven a car and cleaned anything in the house for more, than 8 months. Only my close family members really understand, that those "little things" were big achievements for me considering how bad I was at my worst months.

Anna


that article says that 25% of people don't recover fully....they also say that 25% of people don't recover from the tintitus so maybe they mean more like that kind of stuff. that video with the doctor explaining compensation explains how everyone gets better but can take up to 2 years. i wonder where they get all of these numbers


Anna,

That is so great to hear. "The little things, there's nothing bigger." I'm glad to hear about the process you are making. Hopefully it will be leaps and bounds from here.

I've still been feeling "off." The worst part is the anxiety. There's always this little fear in me that I'm not going to make it through the day. It has subsided considerably and I pray that fear will be gone altogether shortly.

I still get the pressure and tingling in my head. Now the tingling is wierd because it feels more like someone pressing their finger on a specific area on my head. I don;t feel dizzy all the time so the worst thing for me is wondering when the next dizzy spell will come on.

Continued prayers for all and Looking forward to more progress stories. Blessings.

Matt, TX


Anna-

my adrenal saliva test aint back for another week or so!

Candida - with a form i filled in , they think they have it and in case, i am on some crazy no-yeast diet for a while..!

NHS docs are crap though - sorry to say - so i have done this all expensively through a nutrition centre.

Anna - its great you are seeing improvement..

I feel a bit bad coming on here when i see that you are 10 times worse than i am..

i mean - i can go to the shops and do stuff on good days - i just feel worse the next day -

Last nite i went to the bar - few quiet drinks with friends & felt ok, i didnt even drink & today i feel terrible..its taking me +- 2 days to recover from a day/night out and thats not even a busy day/night!

dee (delia)


Recovery from acute labyrinthine inflammation generally takes from one to six weeks, however it is not uncommon for residual symptoms (dysequilibrium and/or dizziness) to last for many months or even years (Bronstein, 2002)


Chad you will be all good in 6 months or so.A FULL recovery seems to normally take 2 years judging but what I have read and cases I have seen.

But remember in the past you have recovered spontaneously, so have I for 2 weeks (after Month 1).I'm at 6 1/2 now and still have crap days but also some very good ones.

Deus (hachu biit normalnom skoro)


hows everyone feeling? im almost at month 5 and i had some really good days the last few days. barley dizzy and when i was it was bearable. today im alittle more off than yesterday but its still not that bad. my girlfriend just went in for an ear infection but hers was outer. scary stuff. they gave her z-pak and shes doing better. anyone else take z-pak in the start of this? it seems like the ear infection medicine of 1st resort. anyways...hope everone is doing good. i hope i stay doing well.


Hi Everyone,

Found this site when looking for information on vertigo/dizziness. I'm 27 and since May of 2005, have been having some strange/unsual symptoms. I started having some sinus issues, and then I got this plugged up feeling in my ears where I couldn't hear very well. One day (May 8) I got scared and thought there was something after me, felt like I was gonna be sucked out of my body or something, like I was going to die. Had not been sleeping real well, had some ringing in the ears, or high pitched frequency in the ears. Sometimes it almost sounds like it was coming from my brain. Then I started getting this feeling like I was on an airplane experiencing turbulence. Or on a boat, like on rocky water. When I'm sitting at the computer it feels like I'm rocking back and fourth in my body or that I'm swaying back and fourth, sometimes it seems like floating, or being somewhat out of my body. Sometimes my desk if I'm resting my arms on it, seems to move, if I'm leaning against a wall, it feels like the wall is moving or like I'm going to go through the wall or something. Things always seem to move and there is some visual disturbances too, like things look unreal, almost like they aren't "REAL OBJECTS" they look like they are made of energy or something as they seem to move too, kind of a swimming type sensation, things seem to swim or look wavy. Words appear to hop or jump. I sometimes feel top heavy, like all my energy or whatever is in the upper part of my body and nothing in the lower half. It's really strange, and like this invisible force is pushing me back and fourth or something. Driving in a car does seem to help, when in motion, but then feel worse of course when I stop. When standing sometimes it feels like the floor is moving under my feet, or like it's pushing my feet up, like get this sensation I'm either being raised or lowered or bouncing sensation. Another way to describe it would be that feeling you get when you're on an elevator and you are going down or up and then come to a complete stop, that "SWOOP" type sensation you feel. Also at times feel as though my body is LIGHT, or like there is nothing to it, like it's disintegrating and feel that (if I were laying down) that I was being rotated a few degrees to the left, then back a few degrees to the right. Sometimes when laying down, get the sensation that I'm going to fall through the bed, that I'm dropping or falling, worse when I close my eyes. Also get this tingling in my head and feet, sometimes feel this rush of energy through my body. Have been to the doctor and everything looked normal in the blood and they just think I was having panic attacks and have a mental condition. I know it's not just panic attacks because it's a constant feeling, it never goes away. Needless to say it's very depressing, and even harder when those around you think that you're crazy and want to commit you to a mental institution because they don't understand what you're feeling. Also scary, sometimes I'm worried I'm just going to die, come out of my body or float away or something.

Thanks for reading my post, hope you all are doing well.

Blessings,

Steve


hey steve

ive had some of the same symptoms and was told i have or had an inner ear infection....but what you need to do is go see a neurologist and then a physical theripist after if he sends you to one. what they test for is to see if you have any problems in your inner ears. sometimes it can be a long process or sometimes they can tell right away. my case the 1st doctor i went to told me exactly what it was and sent me to other ones to concur on it. im going on 5 months of having it and after doing physical therapy and eating right and getting enough fluids and sleeping im doing better than what i was 5 months ago. you already did blood work so you know its nothing there. one thing they might do is send you to get an mri or cat scan to make sure its nothing too serious but like everyone else here that had to go for mris...its just a routine thing that 99% of people have good results. my advice is look into inner ear problems being your main concern and talk to some doctors that are in the feild. if its an inner ear infection that you got from a cold or something that its going to go away and your going to be fine. the symptoms are just really deliberating so that makes you think its got to be something huge. but its not. most people recover after 6 months to a year. but before you jump to conclusions go see a doctor about it. my situation was inner ear infection from a virus or cold (they can't possibly tell you) and its actaully a common thing considering how many people come on here and other sites too. your going to be ok.

chris


I'm at the 5 month mark now and just wanted to let you all know how good progress can be made, especially as I have had this very severely.

I spent the first week in hospital unable to lift my head off the pillow. I was on a drip in Cardiac Care Unit because my heart was jumping all over the place. I went down to theatre and had my heart 'jumped' back to normal rhythm. Doctors think it became irregular because of all the vomiting (potassium levels dropped too low), I don't have a heart problem. Anyway, I left hospital and transferred to my bed at home for a further 6 weeks, unable to walk unaided. In all this time I couldn't see properly due to jumping vision. Many, many other symptoms as well, too numerous to mention here but the whole point is I'm now going out on my own. I go walking in the countryside for 4 miles at a time (this is one of the best forms of exercise by the way to get the balance back). I can do the weekly shopping and light housework and read books!!! It's taken 4 months to get my vision back properly and it still goes haywire in the evenings but much better by day. The brain can compensate fully but if it doesn't, it's only the residual of the illness that's left, i.e. slight lightheadedness which I can certainly live with. I'm not at that stage yet but I'm at least 70% better. The anxiety is lessening as I get better but I've noticed my symptoms have changed in the last couple of days. I hope it's because the brain is finally doing it's job!! The pushing/pulling feeling in my head has gone and now it's more like slowly bouncing on a trampoline which is more surreal. My legs have gone from being tight and painful trying to keep me upright to a marshmallow feeling. One good thing has happened to me because of this illness - I've given up smoking!!!

I hope this gives some of you hope for the future as I'm determined to be a success story.


frances

wow thats awesome! man you had it bad in the start but now your doing great! that seems to be the norm around here. around 5 or 6 months you start noticing diffrences and then as a result you go out and do diffrent things to get even more better. im very happy for you. thats great about the smoking! i nocticed sometimes i feel like i used to when i would smoke too many cigs at once. now i can't even imagine smoking again. maybe that was a blessing in disguise.

they are right when they say it takes a long time for your brain to be ready to compenstate. maybe thats because your body heals to a certain point and then your brain comensates for that to do it. who knows...anyways just glad your doing better.

today is my 5 month annirversary!!! whoohoo! im doing better. im left with lighthead and every so often i fell woozy like my head is being pushed or pulled but i got to say its soo much better than when it started. i hate that feeling to rocking and swaying. but its lessened and i can almost deal with it. almost. but the fact that im seeing improvement and that im doing better can only mean that this thing is leaving and im ready to have a going away party for it. the 1st thing im going to do when im better is go out and have a drink....a drink...one....with my girlfriend. im 21 and my whole 21st year of life i had one drink on my b-day and then i got this inner ear infection like 2 weeks later.

hope everyone is doing better. now frances you said walking is a great way to get better (balance training..) what are some other ones? im doing the balance retraining excersises that the doc gave me but what are some other ones that you guys have noticed helps. ive heard that walking in dark rooms is good.


Chris, Frances, Deus, and everyone...

YOu all say your symptoms ect but are each of you --all working a full day Monday-Friday??

Or has this kept you at home?

thanks! deee


Dee

I was working full time from the start of this for 5 months, but then couldnt hack it and have taken a break since start of december.I am returning to work full time from April, I cant take anymore time off and I dont want this thing to start to dominate my life.It will go sooner or later, so I might as well work and earn some dough.

My symptoms have improved since Jan (start of month 6) and I have had better periods and one day at nearly 100%.The last 4/5 days have been crap, but that is just the brain adjusting and I have learnt to accept the bad times as improvement in that my brain is trying to sort itself out.No doubt next week will be better.

Although a pessimistic outlook I have mentally prepared myself for the long term with this.Most people I have met have taken 1/2 years to fully beat this....so if thats the way it is....thats the way it is.

Luckily I am not housebound and dont get freaked out by cinemas, bars shops loud music or whatever.I find having a few drinks and fun with mates makes me forget the dizziness which is always with me!

This thing is a real bastard but I WILL RECOVER someday so I will ride the f**ker out!

Deus


Deus...

Thanks for the reply --

Do you find though that you are tired the day after you go out to the bar/ few drinks ect??

are your bad days, ones that you are quite fatigued??

Coz those are my bad days and im trying to see if its a pattern with everyone..

thanks!

deee


Hi everyone

I think I was speaking too soon about my health improving, had a major setback yesterday. I went out walking with my husband and thought I was well enough to do some hill walking as it induces the dizziness which makes the brain compensate. I got to the top of a steep hill and my heart started racing uncontrollably. We walked very slowly back to the car but it was getting faster and faster as I walked and the dizziness was terrible. We'd just reached the car when I collapsed. An ambulance came and took me to hospital. They ran some tests and my heart is fine but because I'm not in a good state of health it set the heart off and panic and anxiety took over. I was sent home a couple of hours later but I'm feeling really fragile today and the dizziness is awful. I hope I'll be better tomorrow.

Dee - I haven't worked through any of this and don't know when I'll be able to go back.

Hope you are all okay today.

Frances


deus

hey! i like your attitude about this. i wish i had that. im alittle over 5 months and i have parts of the day where its bearable but then just weird again. i do think and know that im getting better. i ususally feel better after i eat or try and relax. its hard to relax sometimes cause my mind races alot and i do alot of what ifs. my doc told me the other day that hes seen more poeple this year for inner ear stuff than he has for a while. its amazing when you hear how many people docs see a year with this but then you never hear of it until it happens to you. where is everyone from? im from the northern suburbs of illinois.

take it easy chris


I work full days m-f. It can be tough on some days and some days easier than others. I can be home and my symptoms feel less severe than they do at the office. It is much harder to cope at work.

Dee when you say y ou are fine apart from the fatigue -- Do you mean you have no other symptoms??


Sam - Its similar to you in that i can be home and symptoms feel less.

The dizzyness usually comes when i am at the office or out & about..

Its this dizzy, feeling faint feeling that i get. Its usually when i am tired too.. ie - if i have done a bit the previous day then the following day if i go out its worse..

i used to have the terrible nausea when i got up every morning too but that (touchwood) seems to have subsided.

ive had this 8 months.

Sam - at least you are at work!

im from Cape Town, South Africa, but working in london at the moment.(from home!!!)

dee


Hey, I am new to this whole thing but it sounds like whats going on with me. I also have a ringing in my left ear (I had an operation for a perferated ear drum there 15 years ago) does anyone else have the ringing and/or about 50% reduction in the hearing in one ear over the other? also I am an avid sportsman but I am reluctant to play because the sport I play (gaelic football) involved a lot of contact.. can you play contact sports? any advice would be greatly appreciated.

Colm Dublin Ireland


Steve,

I empathize with you. I too have the panic attacks and they seem to come on out of the blue. They started from this inner ear infection and got progressively worse. They are subsiding now (1 every two weeks or so). I had one yesterday and I know exactly what you're going through. That overwhelming feeling of fear, feeling like you're going to die and like you're going crazy. Shortness of breath, heart racing. I woke up the other night whith my ears ringing and I thought I was having an anyuerism, SO there I was up for an hour and a half with anxiety. I'm learning to handle them, but yesterday's got really overwhelming. It's very debilitating. Know that you are not alone. I'll be praying for you.

Frances,

I too thought I could do some hiking. But then my heart started beating really fast and I got dizzy. When my heart beats fast my mind automatically thinks, heart attack or stroke. I had to stop and control my breathing, but it's really frustrating when you know you're fine but your emotions get the best of you. Thank God, this attack didn't land me in the emergency room like the two prior did.

I will pray for all of us, that we will see healing and better days. The best way for me to feel better is to hug my wife and daughters, it reminds me of how precious they are to me and I'm thankful for every moment I get to spend with them.

Just got referred to an inner ear specialist in our city. I'll keep you posted as to what he says.

Blessings,

Matt, TX


Hi - I've looked at this bored for awhile and thought I'd share my experiences. back in Sept 05 I had a sudden panic attack for no reason(never had one before), the following week week was hell, as I didn't know what was happening, my vision was blurry, headaches, body just felt weird and I felt panicky all the time. After seeing a doctor, he said it sounded like an inner ear balance disorder and gave me over the counter sea sick tablets. These didnt help, and a few weeks later i got Stemetil.. I was on stemetil for abotu 2 months and felt absolutely fine. i was no longer scared to be in busy shopping centres because of that fealin of disorientation, and previously I had always been worried in to bumping into someone while dizzy and got terrible anxiety about "acting weird and not myself". I must stress all these feelings were totally new to me and a lot of the time I just worried I was going mad.

I reduced my stemetil tablets beacause I started feelign like I was turning into a zombie with trouble concentrating, everything just felt numb. When I came off, to my horror all my symptoms came back! It turns out that stemetil being a depressent only hides the problem, and your inner ear wil never fix itself while being depressed. As you can imiagine I was mighty pissed at my doctor for giving it to me all this time! anyway Since end of December I came off medication altogether and while it made me really dizzy to start with, i have slowly, gradually been getting better. I'd say im about 80% better now(Feb/March 06), though I do occasionally get the odd bout of unsteadyness, and when i'm working on the computer I always start feelign a bit "funny". But the main thing is if i look back to how I was, I can see I've come such a long way.

For everyone out there...there is light at the end of the tunnel, just sometimes it's one step at a time. I've still got 20% to go, but the anxiety has reduced hugely and I'm starting to live my life again. Good luck to everyoine out there.


Dee

I would say I am a little more tired, but I dont get really really fatigued.

My bad days are just my symptoms of spaciness, detachment and lightheaded and 'off' feeling exacebated.I find sometimes my vision shifts a little when i focus on things.

Today had been a good day with a lessening of symptoms...as the last 5 have been crap.I feel about 95%.I think my true breakthrough will be a day without any symptoms at all....that is when things will REALLY get better.I cant wait...just praying I can beat this by a year.It will be 7 months at the end of this month so...

Sam-How long have you had this junk for now...must be quite a while-you doing VRT or summit?If your symptoms havent improved over a year...try a different diagnosis like MAV or summit.Cos one should see some slight improvement by a year.

Hang on everyone and ride the lab rollercoaster!

Deus


JAWS & EAR DISEASE Many patients with inner ear dysfunction suffer from dental disorders. Patients with inner ear dysfunction, of unknown cause, should have a dental exam. Dental treatment may improve ear symptoms

ive noticed that along with my dizziness and lighthead that my jaw and temples been hurting ever since i started this. i have 2 impacted really bad wisdom teeth in the bottom of my mouth. i talked to a lady last night and she said she had dizziness and light head and off balance feeling for 6 months and was told she had inner ear infection and to wait it out. she went to the dentist told him her problems just through common conversation and he looked at her and said...lets take an x-ray of your teeth. she had impacted wisdom teeth and he took them out and shes been fine and symptom free for over 10 years. i never knew dental problems could cause this. tommrow im going to get my wisdom teeth out and see what happens. if anything it will atleast help my jaw pain and i need them out anyways. wish me luck!!

chris


Colm – sportsman from Ireland. I am a “veteran” of an inner ear (vestibular, balance) disorder. Have been having IT for 34 years from the age of 54 (on and off), If you want my veteran’s opinion (I have been observing my symptoms for many months and even years !) – you can make the inflammation in your inner ear and/or in the vestibular nerve SIGNIFICANTLY WORSE if you are not CAREFUL with your head. Do not shake it, do not hit it, be careful with bending over. You can hurt your inflamed organ with such a sport as football. When you are 100% back to NORMAL - wait for a couple months more – if you DO NOT have the symptoms - then resume your previous to the illness physical activity. None of doctors will give you this advice – just because they do not understand the illness, but only pretend, that they do. I know that Tom (a long term sufferer) has been observing the same bad result of strenous physical activity on his poor head. Tom - am I right?

Chris – good luck with the dentist.

It looks like more and more people started getting IT. This makes me angry and sad at the same time.….. Maybe the diagnosis "labyrinthitis" became more popular among docs (how "smart" they became!). Before they would usually say: "It is nothing serious, it will go away in a couple of weeks, etc."

Anna


Deus,

It weird how some people with this say they have major fatigue and others hardly do!?

Anna, what is your take on it??

While you were getting better in your previous episodes - did you find you were very tired the day after you did a lot?

One of alicia moliks main symptoms is fatigue.. Another guy i know in london has had this about a year and also complains that he cannot do in a day , what he used to be able to do, due to getting tired..

Ie - normal people can go to work, go for dinner after work, then go for drinks after that..

But he also gets to tired to do it all and can only do one of those things in a day..

What is everyone else like?

deee


Colm,

Yes I do agree with Anna. I think some excersize is good for this condition but I certainly would avoid anything even vaguely violent. I've found walking to be about the most dependably helpful thing I can do for the dizzies. Even there I try to do it kind of gently. Everyone seems to be a bit different but I find it REALLY hard to picture how any kind of contact sport could be good for balance disorders.

I also agree with you Anna about doctors and their currently "fashionable" diagnosis. I used to naively assume that people went into medicine out of some overwhelming desire to alleviate the suffering of their fellow beings. In recent years it's become obvious that peoples motives are a lot more complex and varied than I ever could have imagined in my youth!

Take care people. You don't have to be cynical but try to develop a bit of healthy skepticism. In a way a disfunction like ours can give us a new perspective on things,............. broaden our understanding of reality. I think it might be more benificial if we pay attention to our own physical needs, rather than rely on the often uninspired opinions of "experts".

Tom


Anna

Surely what you are suggesting, or the sportsman is suggesting goes against the very point of VRT.Surely the more movement you have and the more you do...the quicker the brain compensates for the lesion in the inner ear and the quicker it gets better.This is how Vestibular compensation works.In my case I have found moving my head and bending over has made my symptoms better if anything.Also as I understand the inflammation/virus in the inner ear only lasts a max. of 2 months and it is the ensuing vestibular damage that causes our dizziness.

This veterans advice thus seems a little srange in my opinion...perhaps thats why he had it for 34 years.

Deus


Colm,

Yes I do agree with Anna. I think some excersize is good for this condition but I certainly would avoid anything even vaguely violent. I've found walking to be about the most dependably helpful thing I can do for the dizzies. Even there I try to do it kind of gently. Everyone seems to be a bit different but I find it REALLY hard to picture how any kind of contact sport could be good for balance disorders.

I also agree with you Anna about doctors and their currently "fashionable" diagnosis. I used to naively assume that people went into medicine out of some overwhelming desire to alleviate the suffering of their fellow beings. In recent years it's become obvious that peoples motives are a lot more complex and varied than I ever could have imagined in my youth!

Take care people. You don't have to be cynical but try to develop a bit of healthy skepticism. In a way a disfuntion like ours can give us a new perspective on things,............. broaden our understanding of reality. I think it might be more benificial if we pay attention to our own physical needs, rather than rely on the often uninspired opinions of "experts".

Tom


Dues - whats summit??


Anna, Many thanks for that, here's hoping it goes as suddenly as it arrived! Thanks again Colm


Dee,

It has been 8 Months for me, and My symptoms have gotten alot better than they were (Touch wood). I am hoping this goes completely soooooooon..... I go to VRT, and have been for the last 4.5 months... which sometimes makes me feel alot worse... I do acupuncture 1x a week (so far 4 treatments).

Sam


Sorry, past message was for Deus, not De :).

Sam


DEUS....me and u are like exactly the same except ive had longer...i go like 3 days feeling like crap and then a week feeling 95 percent other than the spacey head feeling........i hope we beat this soon

chad


after 1 year basically my main symptoms are spacey head feeling and my eyes are always bloodshot my right eye moves alittle its weird...i also get tired here and there but for the most part i know the spacey head goes away i will feel great

chad


Hi Everyone...

I dont really know where to start but I guess I will just jump right in.. A few years ago I was diagnosed with panic/anxiety disorder..I as getting dizzy and feeling faint, heart racing..ect. I was put on A low dose of Zoloft. Fast forward to over a year ago and I am feeling a little bit better, but with a chronic stuffy nose, now I have always had bad allergies..ect..to compensate my stuffy nose i was using OTC nasal spray A LOT!! It was like I became addicted, going through bottle after bottle. Then I got pregnant, and I stopped it and my nose seemed better. I was having the dizzy spells, more like feeling faint-seeing spots, my Dr told me the baby could be laying on my vena cava causing this. So then I have her, 5 weeks premature...she was in the NICU for 17 days--then a month later I started having horrible stomach pains..i ended up with my gallbladder out... Now I am getting more and more sick.. I see spots in front of my eyes, ANY time i stand my heart raises and i feel like I am about to faint. I went to the ER on Monday and they found when i stand up my heart rate goes to 150 ...when i sit and rest it goes down to normal, in the 80's. They told me i was NOT an emergency case, ran some blood work..and told me i was fine..to see an ENT dr for a possible inner ear problem..

I am so tired i can hardly see straight.. I am finding it harder and harder to believe my heart is NOT bad...I cant even go up the steps without my heart racing and me feeling like i might faint. At times my eyes will like jump, like my heart is in my eyes...i see lots of spots and sometimes they glow.

I see my pcp on the 28th..does any of this sound familiar?

Thank you for your time

Missy


Nice one Sam.Glad you are doing better.i'm one month behind you and hoping mine goes too.I have found Acupuncture, exercise and cranial osteopathy have all helped.I also find socialising is good too, cos it takes your mind of it.I used to dread going out, but once im there Im normally find.Infact after a beer or 2 i kinda feel normal!

Chad- Well atleast you are feeling 95% it bodes very well for the future.You have done a solid year now and im sure your good periods will extend and the spacey head will ease off.I know how you feel with this crap dragging on , cos me, you and Chris are all in our early 20's and just want to get out there and hit the town instead opf dealing with this everyday!

Bon chance a tout le monde!

Deus ( loving the cold london weather!)


I am at 10 months and I don't want to speak to soon....but I feel like I am getting better. Still it's worse at night though.....is anyone else worse at night? It feels like my brain is shifting around the later it gets. I am hoping that by 1yr I will be all better. I just want to go out again and have a drink and see my friends! Hope everyone is doing well!


Hi, everybody, Missy - sorry so much for your trouble. If you DO have a vestibular disorder - you will easily recognize your own symptoms among those in the full list below:

From VEDA publication M-3, Possible Symptoms of Vestibular Disorders:

Vertigo and dizziness ▪ Spinning or whirling sensation; an illusion of movement of self or the world (vertigo) ▪ Lightheaded, floating, or rocking sensation ▪ Sensation of being heavily weighted or pulled in one direction

Balance and spatial orientation

▪ Imbalance, stumbling, difficulty walking straight or turning a corner ▪ Clumsiness or difficulty with coordination ▪ Difficulty maintaining straight posture; tendency to look downward to confirm the location of the ground ▪ Head may be held in a tilted position ▪ Tendency to touch or hold onto something when standing, or to touch or hold the head while seated ▪ Sensitivity to changes in walking surfaces or footwear ▪ Muscle and joint pain (due to difficulty balancing) Vision ▪ Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled ▪ Discomfort from busy visual environments such as traffic, crowds, stores, and patterns. ▪ Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome ▪ Tendency to focus on nearby objects; increased discomfort when focusing at a distance ▪ Increased night blindness; difficulty walking in the dark ▪ Poor depth perception

Hearing

▪ Hearing loss; distorted or fluctuating hearing ▪ Tinnitus (ringing, roaring, buzzing, whooshing, or other noises in the ear) ▪ Sensitivity to loud noises or environments ▪ Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance

Cognitive and psychological

▪ Difficulty concentrating and paying attention; easily distracted ▪ Forgetfulness and short-term memory lapses ▪ Confusion, disorientation, difficulty comprehending directions or instructions ▪ Difficulty following speakers in conversations, meetings, etc., especially when there is background noise or movement ▪ Mental and/or physical fatigue out of proportion to activity ▪ Loss of self-reliance, self-confidence, self-esteem ▪ Anxiety, panic ▪ Depression

Other

▪ Nausea or vomiting ▪ "Hangover" or "seasick" feeling in the head ▪ Motion sickness ▪ Ear pain ▪ Sensation of fullness in the ears ▪ Headaches ▪ Slurred speech ▪ Sensitivity to pressure or temperature changes and wind currents

To my mind - it is the most comprehensive and well described list of those "strange", or "unexplainable" or "scary" symptoms, that we all have. Just look at this one: "Sensitivity to changes in walking surfaces or footwear". I can swear, I feel much more steady and balanced wearing my son's heavy boots several sizes bigger, then my own little shoes! Or the following symptom: "Mental and/or physical fatigue out of proportion to activity". Absolutely right! Exactly out of proportion to activity! On my bad days I can become exhausted from doing almost nothing -like from having a breakfast in the morning i.e. for 15 minutes sitting upright, talking to my mom while chewing and drinking.

Anna


Hello everyone

I am back at work after five horrendous weeks. A few weeks ago on a Monday night I had a slight attack and ended up hugging the porcelain, but it passed after an hour or two.

Little did I know but this was only the forerunner to a major attack on the Thursday afternoon which landed me in hospital for a week. I literally could not get up of my own couch even moving my eyes made me vomit, and I had to be carried out by ambulancemen.

BUT!! The doctor put me on betahistamine three times a day and this seems to work for me. It was a slow recovery and I can't honestly say that I am free of it yet but I do feel 90% better.

I still feel it when I'm walking (I have two basset hounds who make me get out every day). I left the hospital with a zimmer, progressed to a walking stick and now can walk unaided. I definately feel it when I'm driving.

On reflection though this seems to have been with me at least since my son was a baby (he's 30 now) especially when I'm driving. But it has never been as bad as this.

My doctor has assured me that although this may occur again I will never have such a severe attack because they now know the tablets which suit me. (Fingers crossed.)

I had a sinus infection at Christmas which I could not shake off at all and had quite severe headaches every day for a few weeks which I blamed on the sinus - maybe this brought it on.

The whole episode has left me very insecure though, and I worry constantly about it happening again.

Nancy


I came across this site yesterday and it was a very emotional revelation!!!

Hi Anna - thanks for posting the list. It seems to describe all of my symptoms. By most people's standards on this website I haven't had it that long ... coming up for one month ... but I know I'm not getting better. So far, after fighting it for first couple of weeks I’ve given up trying to work (even checking my emails at home) or contemplating driving. Instead I am trying to listen to my body but it’s difficult for me to determine which is illness and which is lethargy from so much sleeping. A walk to the shops on Saturday meant I couldn’t get out of bed for three days. I hate being inactive, I am on a fixed-term contract and studying a postgrad, repaying loans, etc… therefore the prospect of being out of work is a particular challenge!!! My doctor seems to think it’s just a question of another week or so … but he’s been saying that for three weeks and I know I’m not getting better. This is the first time I have been this ill and I can’t believe how awful it really is. Luckily my partner and my Mum are being extremely supportive.

Thanks to this site I've booked to see an acupuncture practitioner (despite an aversion to needles) which might be beneficial in helping with other problems too. I am also going to try to get back to yoga practice as soon as possible as the gym seems to be an impossibility right now (don’t fancy doing a Bridget Jones and falling off every bit of machinery I get on) and I think the yoga would help enormously with balance. Has anyone else tried this?

Cranial therapy was also mentioned but I have no idea how to broach this subject with my doctor as the UK system is still resistant to patient's suggestions.

I'm supposed to go with my partner to Australia in a little over four weeks and I'll be devastated if I can't go.

This website has been great for moral support, even after just 24 hours.

Good luck to all fellow-sufferers out especially Missy - hang on in there!!!

Vicky


Hello Everyone! I want to say first and foremost, this is a wonderful site! Approximately 5 weeks ago I awoke feeling "normal" and then within 10 minutes I had the most overwhelming feeling of a tingling sensation that I thought I was having a stroke. It was in my face with such harshness that it was actually painful. Within a minute of that hitting I had fainted the first time. Every since then the dizziness has been to the point where now even laying down doesn't help because I have the bed-spins...and I've had NOTHING to drink by the way. I'm losing weight because I'm too busy to sit up long enough to eat. After blood work, CAT scans, etc. I was diagnosed with labyrinthitis. This comes after battling Epstein Barr and Chronic Fatigue for the past 10 years, so I'm pretty tired of this constant fight just to TRY to feel healthy. I haven't been vomitting thank goodness, but I do have nausea, problems focusing, heavy head feeling, pressure in ears, pain in the back of my neck, and other irritating factors. I'm so sorry that everyone on here has experienced these feelings but I'm happy to know there is a support area, even if it didn't start out that way. As I said, this Sunday, 2/25/06 will start my 5th week with this and I am praying it ends soon!!


Hey lauren,

Good that youre getting better!

Do u also feel the fatigue? Are u back working?

have u tried going out at all at night? pubs/movies etc?

dee


I just found this site and am thankful as everyone else probably is, that we are not alone.

Visited my second neurologist yesterday and as with the first, was told to wait and be patient and this would eventually go away. It has been since halloween 2005 and my patience is wearing thin, although I am truly happy that all my tests are normal.

The neurologist has put me on Paxil, which I'm hoping will help me deal with stressfull situations at work and things like going to the grocery store, both of which make me especially dizzy and nauseated. Apparently the grocery store problems I described to the resident neurologist were a suprise to him and something he had never heard of. Heck, that's been a major issue since day one!

I am trying to keep my life as normal as possible and not let this beat me. Every day I wake up hoping it will be the one when all this dizziness business stops. I am having alot of good days, but not a day has passed in 4 months, where I have felt like my old self.

I would appreciate anyone's feedback on the idea of taking Paxil for Labyrinthitis.


Information for Vicky and all those who are going to fly with an inner ear problem:

Inner ear and flying

Very occasionally, sudden decompression - a drop in air pressure - occurs in the plane. This can affect the inner ear and cause a sudden disturbance in your balance and hearing. Though this is extremely rare, if it happens to you, you should go to the accident and emergency department of the nearest hospital as quickly as possible to check for any damage and to get treatment. If you develop any ear problems or conditions during or following a flight which do not clear up after a few hours, you should see your GP.

Reducing the effects of flying on your ear

You can do a number of things to reduce the effects of flying on your ear. Most of these help to help keep your eustachian tube open. The eustachian tube does not open effectively when you are sleeping. Make sure you are awake before the plane begins its descent, which may start up to an hour before it lands. Yawn, chew gum or suck on a hard sweet to encourage your eustachian tube to open. Keep swallowing, using a glass of water or another drink, but not alcohol. Do this regularly; every 15 to 30 seconds if you need to. If this does not clear your ears, carry out the 'Valsalva manoeuvre': pinch your nose between your finger and thumb, and gently blow air down it with your mouth closed, without releasing the air. If you hear or feel air going into your ears then your eustachian tube is working well. Make sure you are not dehydrated and that you have had plenty to drink. Do not drink alcohol. Flying may be uncomfortable if you have a cold. When you get a cold or other infection around the nose and throat, the lining of the eustachian tube is swollen and gets blocked more easily. If you have to travel, ask your GP (family doctor) or local pharmacist for advice and ask about decongestants you can use. Decongestants reduce inflammation and relieve the blocked sensation. Many GPs recommend you use a decongestant spray about 20 minutes before you land. It is important not to use the spray for more than five days in a row. Some people have reported that earplugs called EarPlanes® have helped them to fly comfortably. EarPlanes® are earplugs designed for flying. They have a small ventilation tube down the middle, which slows down the pressure change in the eardrum when the plane is pressurised and depressurised. However, so far, there has been no medical study to prove that EarPlanes® help people who normally get severe ear pain when flying.

Found by Anna for Vicky.

Vicky - Frankly speaking - If I were you, I would NOT GO on a long transcontinental flight being in the middle of an inner ear problem. You can make yourself worse. I DID.

Hugs, Anna


I must admit I flew to Tobago when I was in Month 4 of my illness and I felt really off balance and weird when I arrived for like 4 days-Wasnt great!! The strange thing is on the way back I was absolutely fine!

I think it is all a matter of luck to be honest.One of my mates cured his labs by going on a plane-weird eh?!

So all in all it affects people differently.

Deus


Hey Anna!

Thanks so much for looking up this info. It looks like I might have to reconsider things. I'll see an acupuncturist next week and see what she says too.

Lauren, you asked if anyone else is worse at night. I'm terrible at night. Apparently it's just as bad when you lie flat and then turn over in bed as when you're walking around. It takes 3 hours for me to get to sleep and I feel drugged in the morning and can't focus my eyes when I wake up. When it first started I kept telling my boyfriend to stop taking all the space in the bed - I thought I was on the edge of the bed about to fall out and he was pushing me out, but I was right in the middle!!! Poor guy thought I was bonkers (this was before the doctor told me what it was). Sea-sickness in bed is not fun!!!

I've also done a classic falling over moment when I clean fell over sideways and got straight up again. It looked like a Laurel and Hardy sketch.

Oooh, I've got to laugh, helps keep my spirits up!

Sending you all moral support ... Vicky


Hey guys,

As well as being on this board - I have just joined this forum too::

http://groups.msn.com/LabyrinthitisSupport

deeee


After a week of distinctly average days , I feel 98% today and it feels amazing.

Deus


Kathy - I have been taking Paxil for more, than two years for labs and related inner ear disorders. Now I am feeling a whole lot better, than at the worst of IT. So, I have been reducing the dose since I started seeing small improvements(now I am on only 10 mg a day, at the worst time it was 50 mg per day). No way, that I am applying the improvements to Paxil - the inflammation of the inner ear is reducing NATURALLY - I strongly beleive the strength of our bodies and in this natural improvements. But definitely, Paxil helped me to reduce the terrible stress of the illness and to go through the whole ordeal. I was is an awfully bad shape -at first - completely bedridden, then - house bound.

For those who are not THAT BAD and who are ill for less, then 7-8 months, and who are seing definite improvements - I would not advice to start taking Paxil, or Zoloft, or any other SSRI. You can recover without them!

Everybody, hold on!

Hugs, Anna

Anna


well im back from my wisdom tooth idea and let me say this...what an expirence. i did it without being knocked out. oh man the shots in the mouth and then the pulling and breaking of teeth and tearing sounds.....holy moly! today is the 3rd day after and im really not in any pain. but to my despair....still dizzy. i really was hoping that that has something to do with it. it made so much sense. anyways...now what should i do. i mean ive done every test. is it possible to get a Cat Scan on your inner ear?

deus....im so happy to hear your feeling better! thats incredible! it give me so much hope.


Chris

There isnt anymore you can do but VRT and riding it out.It will go with time.Once you prepare yourself mentally for the possibility off this dragging on for a while and then get on with your life....it becomes a whole lot easier.

Your are clearly over the worst of it.Just be prepared for up and down periods.Look at me , I was feeling like crap last week and now (hopefully) Im on for a good patch!


hey

thanks for th info. my mom is mad cause she doesn't understand how this can last so long so shes wanting me to get a cat scan of my inner ear. is that possible? is it something i should be worried about? anyone else have one? i had an mri and a ct scan of my sinuses. im having a weird week. had my wisdom teeth pulled so on top of feeling weird and off i also have that. though im not in a lot of pain so i can count my blessings.

i refilled generic brand of xanax. its only.5 mgs and i only take one when i really need it so i was told it won't affect me or recovery. only that stuff in high doses. today is better than yesterday but still not great. this really is a roller coaster of crap

hope everyone is well

chris


Hey Chris

I have no idea whether a CAT scan of the inner ear is possible but I would say hang on a while before you see whether the wisdom teeth pulling has an effect. It'll take a while before your body adjusts if there are going to be any results. I've got the same problem with my jaw and teeth hurting permanently since this started. But I think it's from grinding my teeth in my sleep which I imagine I would do much more now if my brain is tired from permanently trying to re-adjust! I've been told I grind my teeth by my dentist - although I think that it's more a case of gritting my teeth so hard it hurts as my boyfriend's never noticed! I reckon grinding would be as annoying as snoring!

I know it's frustrating for your Mum because I imagine to see you so unwell for so long makes her feel useless but you're the one suffering from it!!!

Deus - way to go, it's great to hear you're doing so well. Bon courage!

There is light at the end of the tunnel ... Vicky


hey,

a few posts from fellow sufferers about FATIGUE:

http://groups.msn.com/LabyrinthitisSupport/myexperiences.msnw?action=get_message&mview=0&ID_Message=260&LastModified=4675551513273481601&all_topics=1

deee


I went out last nite as was feeling good and got really pissed.Was the best fun I have had in ages!!I feel like crap and dizzy today...but I dont care cos I had such fun.

Hopefully I will feel better again and not have a bad patch! Urghh!

Deus


Hi, all

Everybody - there is light at the end of this tunnel. I am definitely going to the end of my fifths bout of IT. The fifths relapse started in the end of 2003 after a long transcontinental flight. Now I am much-much better than at the worst of IT. So, there IS HOPE even for such an unlucky case as myself...

Chris - the inner ear is a very small (size of a dime) and extremely delicate and complicated organ of a human body. Unfortunately, Even a even a very high resolution CT scan CANNOT see any differences between a normal and an inflamed ("damaged")inner ear structures. By the way - my mom is 85 years old and she has ten times more energy, than me, who is 54 and healthy otherwise, than my vestibular system. She also cannot understand, why this illness cannot be seen on any tests, at the same time affecting my quality of life so severely. She is furious with doctors for their complete helplessness - her child is suffering and medical science cannot do anything...

Anna


vicky

hey thanks for the info. how long would it take for the wisdom teeth thing or for your body to adjust.

on the inner ear boards they talk about how after inner ear virus your left witht he anxiety and thats what keeps sympotms around basically cause they copy cat the same symptoms. i think im dealing with the anxiety now and i need to get over that. im a very high strung person any tips on how to relax?


Chris - people say that Tai Chi is extremely good for relaxation and improvement of balance.

Anna


Anna,

Do your labs come back as strong as each time. I was 100% recovered last year and it's back. I'm getting the anxiety, some dizzies, fatique, loss of appetite etc. but it's still not as bad as the first time. Also, I'm cold all the time. Is this unusual? I don't really see any point going back to the doctors.


Hi Chris

To be honest, I'm not sure. If your teeth made the situation worse, then as long as you're not grinding them in your sleep, I think you would feel different within a few weeks (If you are grinding your teeth though, the best way to stop it is to get a mouthguard to wear at night).

The anxiety side is really significant, especially if you are a highly strung person (like me). I try to use some yoga techniques to stop some of the dizziness. One trick I have is to focus on a fixed point on a wall (not too far away) when I'm feeling dizzy and think about the point on the wall rather than the dizziness. There are Acupressure techniques which also help with the nausea which I hope to find out about when I see the acupuncturist on Saturday. I saw a different doctor today who said I should take a small walk each day (along a safe route!) to get my confidence back but in no way should I attempt to drive. He completely recognised that my confidence is an issue. If I go to the supermarket, people make me dizzy rushing past and I have to walk along the aisles running my hand along the shelves. People must think I’m nuts. But I won’t stop going. What I’ve noticed is that I’m really confident at home to the point where I can rush around the house. As soon as I step outside the front door though everything becomes unfamiliar and less within my control and I think I’m going to fall over. I think a feeling of lack of control is one of the biggest issues with anxiety.

I can't sleep at night so I've "borrowed" my boyfriend's iPod (yup, he’s not getting it back) and listen to any music that's chilled out. My heart rate goes up when I'm trying to get to sleep as I start panicking when the room is spinning, I find the music (James Blunt, Sarah Maclachlan, Missy Higgins in my case) is really soothing and stops this happening.

I daren't try yoga again for a while but as soon as I'm beyond the falling over and falling asleep stage I'm going to go back to it. There are different forms and Hatha yoga is interesting enough (less tree-hugging aspects) without being very strenuous (like Astanga).

The thing is everybody's individual and some things annoy one person which sooth another. I have always been a very stressed out person - until I started doing yoga which helps me control my breathing (I'm asthmatic too) and makes me feel very, very good after each session. Anna's suggestion about Tai Chi is a good idea. It really depends on what you have available locally and how much effort you're prepared to make.

Right now I'm willing to try anything!!!

Sorry for writing so much, I have no idea if any of this helps.

Look after yourself ...


I haven't posted any comments lately because I seem to be falling into a deep hole that I can't claw myself out of. The labs seems to be getting better (slowly) but the anxiety is getting worse. I really don't understand it at all as I did have it under control for quite some time. The palpitations are really getting me down, despite having all the tests done and being told my heart is healthy. I'm checking my pulse regularly which, of course, is making the situation far worse. I've always been such an outgoing and confident person but this has knocked me for six!! I know anxiety plays a huge part in this illness but I'm still avoiding taking any form of medication. My GP has prescribed me tranquilisers to get me over this bad patch but I've resisted taking them so far. I'm into my 5th month now and I think because it's dragging on for so long it's making me more anxious to get on with my life. I want to plan a holiday and resume my French studies - oh well, at least it's nice to see the snow drops in the garden with spring around the corner........


Two questions for all.

1.) Does anyone else find that, when you are able to exercise, afterward, that your labs "act up?" Dizziness, etc. I seem to sometimes get this light headed feeling when I stand up fairly quickly or after I exercise, rest for a bit, then get up and walk around.

2.) Anxiety sufferers. Do you find that it comes and goes in cycles. I.E. having a good couple of days to weeks then it returning.

Hope everyone is having an awesome day. Blessings.

Matt, TX


Thanks for the information Anna - although it has been difficult to concentrate to read all of these comments, they make me feel 100% better that I am not alone and that this will eventually go away. I am on a very low dose 10mg of Paxil and it's been less than a week, so I'm not sure if it is helping or not. I have a pretty stressful job and haven't been sleeping well so I am hoping it will at least help with that. I just keep plugging away. Take care.


robin

how long did it take to to reach 100% last time?


Hello, I have not been diagnosed with anything since I started getting sick in June 0f 2005. It was the dizziness, vomitting and vertigo preceded by a terrible headache that first sent me to the hospital. While at the hospital, I had major ear pain, throat pain and my face hurt. Sadly it seemed all my simptoms were ignored because of a more pressing illness(Primary sclerosing colangitis, a rare liver disease) I later found I had. Unfortunately now I am considered permanately deaf in both ears. Doctors have speculated possible AIED or some viral infection to be the cause. For some reason I believe Ibuprophen may be partly the culprit. Anyone else have problems with ibuprophen?


Hi, everyone

Robin – my 2nd bout was shorter, than the 1st one (4 and 6 months approximately) and approximately 19 years apart. The 3rd lasted appr.13 months - I think it was so long because Brandt-Daroff exercises prescribed me by a local ENT doctor MADE ME WORSE and prolonged my recovery. There were approximately a year in between the 3rd and the 4 th bout. Now looking back, I think it was not a complete recovery after the 3 rd bout, because I remember myself avoiding bending over and not going to the gym. The fourth bout was about 5 months long (no any vigorous exercises – only a lot of walking!). Then there were great absolutely dizzy-free six years – a lot of business and vacation trips till November 2003. (the following is from my letter as of December, 2005 to my long-term disability insurance company – it is easier for me just to copy a big part of it ):

Dear Sir, or Madam:

I am writing this letter in order to help you and the doctors who are reviewing my claim in better understanding of my health condition.

Just to remind you briefly on my situation. I am a hard working woman having a PhD in Materials Science. My achievements in career and in the chosen profession of engineer and scientist were not minor. I have 20 years of high-professional work experience in Russia and 9 years - in the USA. It is just not to mention, that my professional rise in the USA was quick and successful.

Unfortunately, I have a persistent and ongoing health problem from the time I was 20 years old. It is dizziness, vertigo, poor balance, mental and physical fatigue out of proportion to activity. Doctors always have suspected that I have a disorder of vestibular system, which effects not only balance and spatial orientation but also vision, sound perception and even mental ability. Never was I given a hope from medical community, that my illness can be cured, or even understood. No any trustable prognosis on my future quality of life was given, as well as no treatment was ever effective. The only positive thing is obvious – I will not die from this illness. The current bad relapse started in the very end of 2003. A bad vertigo attack hit me right after a long transatlantic flight on a business trip to Japan. The whole year 2003 was very successful for me: I worked 9-10 hours a day in production and on two new exciting research projects, I visited 4 scientific conferences in the USA and abroad. Probably, it was too much stressful and overwhelming for my impaired vestibular system. After the relapse started, I had been working with persistent symptoms of 24/7 dizziness, blurred and jumping vision, extraordinary sound sensitivity and non-stop headaches. Completely exhausted, I finally collapsed in June, 2005 and stayed mostly in bed for half a year afterwards.

For the time being I have the same symptoms of a debilitating vestibular disorder. I am housebound: cannot drive, cook, clean the house or do laundry and gardening. My 85-year old mother and my husband take care of all the housework and shopping. I can walk only very slowly with help, or grabbing on furniture and holding to the walls. Currently, I can work on the computer for a very limited amount of time because the computer screen increases dizziness and blurred vision to the point of fainting. The pressure of having this “rare”, “unusual” and “strange” health condition, which can make me totally disabled at any moment of my life, led me to an extensive on-going research on my condition in medical literature and on the Internet. I discovered a few real specialists all over the world who are trying to understand balance disorders, but all of them admit, that the current state of medical science cannot suggest a cure, or effective treatment for this condition. I was lucky to find several support groups and organizations dealing with the problem. From 1995 I became a member of VEDA Vestibular Disorders Association (http://www.vestibular.org/vestibular disorder association) who strives to elevate public awareness about vestibular disorders in order to promote understanding, access to diagnosis and treatment, research, and help for those facing the challenges of living with a vestibular (balance) disorder. You are very welcome to visit their website.

According to your requirements, I filed a disability claim with Social Security Administration. For the time being my claim is under consideration. On request of SSA I visited three more doctors for their medical evaluation: Etc. “

Robin – what I think about doctors. You can just discard my advice – no offence. Doctors cannot help you with dizziness. You can ask for a headache medication, or a sleeping pill (they DO HELP). But what came to my mind when I started to deal with the system - you SHOULD keep records of your visits to doctors for such an “untreatable” symptom as dizziness (probably, from the same whom you complained of your symptoms in your first bout). I understand, that you DO NOT anticipate, that this illness will continue to affect you after your full recovery – and let’s hope IT WILL NOT AFFECT YOU in future. But just in case (life is unpredictable) – go to the doctor, state him or her, that you have these symptoms come back and take a copy of this record from the doctor. Forget about the visit, but keep all records in your file. By the way – it is a good practice to have a file for ALL your visits to ANY doctors for ANY reason. It is your body and your life and YOU ARE RESPONSIBLE for it.

Yours, Anna


Lisa - AIED is an autoimmune inner ear disorder? Did doctors make any blood test to give you such a diagnosis, or they just guessed? Do not know anything specific about ibuprophen but it is a sad reality, that some medications can be TOXIC for very delicate inner ear structures. You said, that Your vertigo, vomiting was preceded by a terrible headache - maybe it was an attack of migraine? There is a very popular diagnosis among doctors now - MAV - migraine associated vertigo. Look up on the Internet about the symptoms. People say, that a person with MAV can benefit from migraine medication such as Imitrax. Also you said, that you became deaf (after that one attack?) Does not look like classical labyrinthitis to me.

Anna


hey everyone. ive never heard of ibprofin causing any realy bad problems but i could be wrong.

i phoned my doctor and asked about my eng test and he said that my eng was normal but when they put the hot cold water into the ears it showed i didn't respond too much....which i didn't. now ive heard that alot of people don't respond and that is normal. he said my right ear was alittle weaker....not when i did the test the lady who did it was on the phone with one of her friends and completly missed my right ear untill i had to tell her that she was missing. now call me crazy....but i think that may have alittle to do with the right ear being alittle weaker. my hearing test was perfect....mybalance never seemed off. i never wanted or felt like falling. just wozzy in my head and lighthead. never true spinning. im thinking about looking into Generalized Anxiety Disorder cause that has alot of the symptoms ive been having. before this started i had 2 of the worst anxiety attacks of my life and it just never seemed to go away. i feel better when im not in certian situations....but i never feel 100% any thoughts?


Chris,

I had an ENG done and when they put the hot and cold water in your ears you are supposed to get dizzy, at least according to the audiologist I saw. She said that not getting dizzy indicates that there is something wrong. I was found to have a "right side weakness" as well, and they said that was typical for an inner ear disorder. I was basically told that what happens is the fluid in your inner ear is not balanced (I have 30% less fluid on the right side than the left) which is what causes the imbalance as well as the nerve damage to the inner ear from the infection. I noticed that when they put the hot water in my right ear I did not get dizzy. However, I did get really dizzy with the hot and cold water in the left ear. The hot water makes the room spin one way and the cold water makes it spin the other. I never had the spinning sensation, the room just kept shaking back and forth, but very unsettling when I had it done.

From what I've seen, anxiety results from this infection because the body is constantly "off-balance" and it goes into the fight or flight response. I know what you're going through with that. The panic attacks are never fun and very debilitating.

Good luck, Blessings to all.

Matt, TX


Chris

It took me about 7-8 months to really feel good again. I worked the whole time, and slept as much as I could. I am often dizzy in bed, but fatigued so much of the time, that I really don't have a choice. I'm not really able to exercise much and it is so cold here in NJ that I really don't want to walk. I know this will change in the comming months. I constantly try to take one day at a time and remember, this will pass and it's not fatal. I am successful only part of the time. I have an extra challenge at home because my husband is bi-polar and having an "event" right now so I'm feeling especially sorry for myself right now. "What doen't kill you, makes you stronger". This too will pass.... over & over & over.


Hi, guys

It is very hard for us to read from a computer screen. It is a great overwhelming load on our eyes. TRY TO read PRINTED text instead of reading it on computer. Select the text you want to read, for example mew posts on this page,do not forget to mark Selection option in computer settings (File menu/Print/Selection option). As for me I NEVER read from the computer screen, only very short messages. I know, that many people with dizziness or/and eye problems prefer the same thing.

Anna


I have been battling Viral Lab for 3 months now and I have a constant dull ache in both ears? Does anybody else have this symptom?

For relaxation, I have tried yoga breathwork. It is very effective. If interested visit drweil.com and read about the different breathing techniques. I have found them to be as effective as xanax witout the side effects...


i just called my neurologist and i told him how i was feeling and he was kinda suprised cause he said with my eng results that this should be going away or gone by now. he asked if i was doing all the excersises everyday and taking klonopin every night. well to be honest i did the excersises on and off for a while and i never took the klonopin. do you think that that is whats keeping me from getting better? im in a band and our 1st show back is on april 1st so i have one month to get this stuff under control. i have had this for alittle over 5 months. so do you think i will do better if i take the klonopin as directed in the 1st place. i feel kinda dumb for complaining about having this and not doing what he had told me to do.


deus

when you had your eng....how did you respond to it? just curious. did you get dizzy during it? what was the result?


Chris

The joys of the ENG! Yep I did get Dizzy.Even though my eyes were covered by goggles in the dark I could feel myself spinning.It was worse in the right ear.I would never want to do it again! I was diagnosed with right ear weakness.

Still feeling ok, bit up and down in the day, but getting better.Just kinda feel more 'off' now and vision bit funny now and then.

Can't complain, only in month 7.At this rate should be done in 12/18 months!

My advice: Just keep moving, see mates, exercise and just take your mind of it!!

Deus


Chris

I'm also at the 5 month stage and was told by a specialist that my test results were fine and it should have gone. Ridiculous remark to make as everyone is different with their healing process. I was told something interesting yesterday about vestibular neuritis which I think is exactly the same as labs with vestibular damage. Apparently its thought that herpes (cold sore virus) could be to blame. Has anyone else heard of this?? It's interesting because I had a cold sore last September and went down with this in early October. Anyway I've just got an appointment through to attend a balance clinic end of March and details of a support group just 3 miles from my home. I'm still dizzy 24/7 but not to the same degree every day. Here's hoping its on the way out. You might be interested in some of the comments on Emma/Ilia's site Labyrinthitis.org.uk-support for Labyrinthitis sufferers. Quite good debates at the moment - especially in dealing with the anxiety.


I just found this website and have found it comforting to know that there are others out there with the same types of symptoms. I was diagnosed with Labs in August and have suffered with the severe brain fog and horrible ear sensations since. I also have a terrible time with flourescent lighting and can't tolerate supermarkets, the mall, etc. I had an MRI which was normal, took a 12 day course of steroids last month and am on my 2nd ENT consult as I feel I still have no answers. I am currently on an LOA from work. I am nervous as I am supposed to go to California next month and am afraid of what the plane ride will do to my dizziness.


Chris,

You admitted, that you had several panic attacs BEFORE LABYRINTHITIS. It looks like you DO HAVE panic disorder. Labs just made it worse! Klonopin is used in medical practice to treat panic disorders specifically. Maybe, in your case it is worth trying. Keep in mind, that you should avoid alcohole while taking klonopin. (read the information on side effects of klonopin carefully).

ABOUT DOCTORS. It is better to be HONEST with them and discuss OPENLY your doubts! Do not be shy in this discussion - you know A LOT about your illness (do not be rude, of course)!. It is no way disrespect to doctors - IT IS YOUR HEALTH!!!!! and it is normal, that you care about it. Be in charge of your own health. I mean, if something seems SUSPECIOUS to you from what he prescribed - just do not do it. Trust your instincts. On the following visit just say that you read or heard something about the prescribed exercises, or drugs, or are afraid of side effects, or you started doing or taking something and it made you feel worse, or having new strange symptoms. And of course - never deal with doctors whom you do not trust and/or who do not want to openly discuss your situation in detail.

Robin - you said, that you always feel cold. I found out, that I almost never feel normal temperature-wise during relapses of the inner ear disorder. Either I am terribly cold and trembling, or I am hot-hot and sweating. Never I was that way during dizzi-free remissions. It is a strange illness! Somewhere I read, that the inner ear is responsible for fine-tuning of our body temperature control. In everyday life with IT I found it useful to always wear clothes in layers. I remove them one by one if I am hot, or I increase the amount of layers if I am cold (funny, that I can be freezing even in summer time).

Anna


anna

do you think its possible i never had the labs just a panic disorder?

i never had the true spinning never had a feelign of falling or off balance like i was going to fall just woozy head and tension kinda sick feeling

my ears felt full buts thats true with panic and anxiety too.....and also alot of other things like tmj....which i feel i had.

no ringing...anymore than normal...everybodys ears ring once in a while


deus

you said you felt dizzy in your right ear really bad and you were told you have a weakness in your right ear? man its so confusing. people say that if you don't feel dizzy than thats the problem ear.

thats it....no more guessing for me. im going to look into my anxiety and get it under control and see how i feel


Anna, I have a frequent dull ear ache/fullness in one ear. I think its normal to have it.

I was diagnosed with vestibular neuronitis last summer. After a month of Serc I was over it. Never thought Id see it again. Then, 6 weeks ago, I came down with far worse symptoms - vertigo, nausea, balance problems, headache, and could not recline fully in bed or turn my head right or left in bed for almmost a month. The previous bout of Neuronitis was a piece of cake compared to this!

This time the diagnosis was BPPV AND a bit of Lab thrown in. It is the worst thing I have ever had in my life. I am so glad to have found this site and discover that other people are going through this "thing". And that there is hope.

The fear is that I may get it again...and also that it has taken people so long to feel relief from it. I am at the 6 week stage...and never know when I start to feel better if this is going to last or I am going to have another setback. So frustrating. I am thankful though that I am not vomiting like so many people.

This week I am feeling much better, jsut a slight fullness in one ear, very tired, and a bit spacey. I long for a night when I can roll over and sleep on my side again instead of on my back with my head straight up. I'll never take that for granetd again! Anyone else have this problem with head position in bed? I havent read to muuch about it, or perhaps that is more associated with BPPV?

tim


Hi all! Havent been on here for AGES - sorry! Am working full time in a physical profession and although am coping, get v tired and seem to have little time for posting once I've done the website emails etc! Things the same though this end though prob coping generally better. Do email us at the site if anyone needs any advice or info. Will try and pop in a bit more here!

Hugs, Em xx


Tim – Positional vertigo with my head being horizontal, or turning to the sides while being flat - is my big issue. Very typical for ANY inner ear disorder (including labs and BPPV). During relapses of the inner ear disorder I absolutely cannot lie flat – I use two or three pillows in my sleep. I know exactly to what side NOT to turn in bed – it is the side of my “:bad” ear. The problem for me is, that both my ears seem to be affected. At different periods there was one ear “worse” than the other. So, I always sleep on “better” ear with the worse ear up. How do I know which ear is “better”? I TRY. I do not know if it makes sense what I tried to explain…..

Chris – you ARE an anxious person. But somehow my feeling is, that you DID have a mild case of an inner ear infection. Your caloric response at ENG test in the beginning of IT was different from what you have right now. Am I right? So, something in your vestibular response has been constantly changing since the worst of IT. CHANGING is COMPENSATING (or getting back to NORMAL). Your anxiety and panic just sky-rocketed when you started feeling all new and frightening symptoms. Also you mentioned, that you have TMJ – so the problem could have spread from there (our jaws are connected to inner ears so closely!). Also you mentioned once, that you have to change your head positions at night being in bed because you feel very uncomfortable in some positions – typical for vestibular problems, but not for anxiety, or panic. Just my thoughts…. Have a look at this article – it covers psychiatric aspects of dizziness among other issues. http://www.pneuro.com/publications/dizzy/

Oh, dear friends – I am definitely feeling better – I can work on the computer longer and longer. It was absolutely impossible for me just 6-7 months ago!

Anna


Hey Frances and everyone! Yeah - I had the most shocking cold sore just before I got this. I felt as though I was coming down with flu but never really got it, then this happened. I read the same thing about the herpes (cold sore variety) being implicated too.

I also read that anxiety and depression are thought to inhibit recovery which is why anti-depressants are often described.

I've been a bit better the past couple of days (I can move around more and do more things round the house, and I've been for 2 walks!) and I'm crossing my fingers and remaining optimistic that things are improving!

Bye for now!


Hi, Emma

So glad you are doing better and working a full time "physical profession"! What exectly are you doing? I had to resign from my favorate job which I liked so much and I am currently on disability. But of course, I am looking forward for a day when I will be able to work. For those who do not know Emma - she has been sick with uncompensated labs for three years. Visit Emma's site - Labyrinthitis.org.uk - it is very informative!

Anna


Still feeling ok.Its been a good week.Only problems have been feeling off with stuffy head headaches in morning and slight dizziness.My vision is also off when I focus on things.

All in all a better week than previous.Lets hope things get better than worse again.So fed up of ups and downs.

Still not completely normal and want it so badly!!!

Deus


today is sooo weird its been 1 year and 1 month and i feel very good by my eyesite is like 85 percent and its just lingering.....i hope it maybe coming to a end but i still have that spacey head feeling lingering...and alittle marshmellow feet......but other than that im ready to roll


Hi Anna and everyone...

How long does the problem lying flat in bed and head problems persist? Will it ever go away? Or does it come and go for awhile?

My fondest wish right now is to be able to sleep in bed on my stomach or side again! I can't believe how the little things in life you take for granted cannot be accomplished with this thing.

tim


Hey Dee and everyone! No I am not working yet....I need to but I am very afraid. I had to quit my job when I got this so I also have the task of finding something new. The head pressure I have is really annoying and always worse at night, I am getting out and doing little things and driving short distances....just waiting for it to gradually start going more and more each day...I feel like I am kinda stuck at a crossroads right now where I just feel kinda off and it won't leave. Well it seems that everyone is at least getting a little better...Anna, Chad Dues...etc. Glad to hear it....I think that time is the key to healing unfortunately...and w/ nice weather around the cornner I think that this will help too. fingers crossed!


why do some people on other boards have this for 6 to 12 years? what is it that keeps this on for so long? how do you look at that and not get discouraged. i know you shouldn't take everything that you get from the internet to heart and that just cause you read something doesn't mean that you have it too....but it just seems like too much. my neurologist doesn't know why this is lasting so long and its hard to believe him anymore since he said that he promises that it would be gone. i don't know what to do anymore. my life is just turned into obsessing about this illiness and i just want out. im on month 5 and where i know thats not long for somepeople...its way too long for me. i don't even know for sure if this is what i have. had balacne test and that seemed fine. had eng and all was good until the water test (calorics) i think. said that i really didn't respond to it. thats all im going off of. hearing...good. headaches..no vision....good. now im going by what eveyone else is saying so i just don't understand whats going on with me. i just feel lightheaded and woozy and anxious all the time. any help??!?


Hi Everyone - I have posted here a couple of times and thought I better post to let you know my status. This is going on my 7 month of Vest. Neuronitis. I am feeling pretty good. The only time I feel really crappy is when I get sinsu infection/head cold. My dizziness gets really bad. I also have been dealing with muscle twitches. They drive me up the wall. I am scheduled to see a 2nd neurologist on Tuesday to see what he thinks. Has anyone else experienced twitches. I didn't them until about the 4 month into this and have ever since. Sometimes I have days where I mentally get really down thinking there is something else wrong with me and then think that they would of found something by now. I can now go to grocery store and malls without any problems pretty much. Yeah!!! I also had a normal ENG when I had it done. It was on the higher end of having weakness and I also did not have it done until the 4-5 month into this. Hope everyone is doing well. Take care.


dues

hey. glad to hear your doing well. are you doing vrt? is vrt basically balance retraining? what are some ones to get rid of lighthead and woozy feeling. are they the same? ive been taking klonopin for the ast coupl days and where i feel off alot throughout the day i find that i go out and do stuff more and don't feel that bad really maybe this stuff works?!?


hey

thats great that your feeling better. did you do vrt? i wondered if i had my eng done at month 4 or 5 if it would be normal. mine was done at 2 and it was kinda sketchy. the water test really confused me. im on month 5 and i find myslef doing things i couldn't have done a couple months ago. though i still feel off sometimes during it. but sometimes i feel good and just enjoy it when i do. keep us posted


michelle

what do you mean by higher end of weakness?

glad your doing good! keep it up


I did do Vestibular Therapy and think it helps. I have to say now that I need to conintue o do it because I have stopped. My VST was head movements to regain my balance. I am also on Klonopin and take mulit-vitamens everyday. When I had my ENG done they said that if you score 20 or higher that you did have weakness in your ears. I scored a 17 which is considered normal, but think I scored that being so far into this. I mentioned to my ENT about having nerve section if this doesn't completly go away in a year. He said that it is mostly for people with veritgo or menier's desease and that's it's a major surgery. Has anyone else ever heard or thought about doing this. Well better go talk to you all later.


michelle

i would strongly urge you NOT to do the surgury. having this illness sucks but it goes away naturally. you just had a virus that knocked you off track for a while. surgury right now for that is trail and error....it could work but you can do it without it. if something goes wrong with the surgury you could end up having perminate damage and very likely have some problems for a long long long time. there is a lady on the dizzy lounge that did and shes stuck like that. so i wouldn't personally even think of doing it. you will be fine...just ride it out.

i wonder if my eng would have been more normal at the 4 month mark i had mine at like one and half months.

anyways....try not to do the surgury. you don't need it. you'll be okay.


id like to add that ive also been told that after a while the nerve depending on where it was....not the one for hearing....but the one for balance grows back. takes about 2 years ive heard for that. but your symptoms end way before that. its the hearing that might not come back. might. but your case hearing is fine right?


michelle

did you get real dizzy during the eng?


Hi, everyone.

I am doing better and better going on the 27 th month of my 5 th bout of IT (labs/BPPV/perylimph fistula/migraine associated vertigo, or any combination of all of the above). I have symptoms and time frame consistant with all of the above mentioned inner ear disorders.

Michelle - you can imagine how much information I have gathered from all kind of dizzy people suffering from IT all around the world. Do you want to know who became the WORST with their symptoms? THOSE WHO AGREED TO ANY KIND OF SURGERIES became absolutely THE WORST - bedridden, in a wheelchair, housebound for a long-long time. You can even die!!!! (beleive me - I know a couple of SUCH stories) DO NOT EVEN CONSIDER ANY KIND OF SURGERY!!!!! I have not found a single person in the world who would have been REALLY helped by a surgery on the inner ear. The only one case when a patient is forced to go for surgery - if he or she has a tumour of the inner ear (even a benign one). By the way - HONEST doctors will NEVER advice you to agree for a surgery inside your scull...

Everybody - we will COMPENSATE NATURALLY. Patience, patience and patience. Slow down and take care of your body. No violent movements. Vitamins. Klonopin or antidepressants (whatever works for your anxiety). Walk with support or without (whatever you are able to do at a certain moment of your recovery. Try new activities little by little. Keep a diary of your symptoms to see improvements. Join a support group on-line or alive.


bruno

an old sufferer of this mad labs said he was treated for depression and was cured. my docs say that anxiety and depression is what keeps this stuff going. bruno was on something called Effexor. maybe its good to look into. im taking klonopin. is there much of a diffrence. im on day 2 of taking klonopin and i already feel better if thats strange


Hello all; I Have not posted for quite a while,not since I went back to work full time. It has been 15 months since I first came down with labs. The hearing loss and tinitis have not changed. Gradually my balance has improved -- I can wear high heels again! I really only notice the problem when it is dark and so can't compensate with vision. The dreary days of winter do make it hard, but my colleagues are wonderful and recognize that the compensation on those days is very tiring for me.

I am still plagued by that darned tingling in my feet and lower legs. It seems to be worse on those days when I have to work at staying balanced :-)

It is just great to know this list is here, and I am not alone.

Thanks everyone... and just keep taking it one day at a time. Lorraine


anna

good advice. i wouldn't even go near surgury for it. are you saying stay away from klonopin and antidepressants?


Hi everyone - thanks for all the posting about the surgery. I will not even keep it as a thought in my head. My ENT was really against doing it when I mentioned it. He did stress to me that it was a major surgery. Anyway, today is an OK day. I been better, but a lot worse too. Chris - I did get really dizzy when I had my ENG done. I did notice that I got more dizzy with one ear more than the other. Did you?? How long have you been struggling with this. Anna - Thanks for your responce too. Your an inspiration to a lot of people on this website considering all you've been through. Hope you hare doing well.

Take care - Michelle


michelle

ive had this for alittle ove 5 months. i did not get dizzy during the eng but i guess some people do and some don't. plus alot of factors can change the outcomes. i hear the eng tests are kind of inacurate.

how did yours start?


Hi everyone I am so happy I found this site. I have now had this for three years. I have been to all kinds of doctors. I have been diagnosed with every kind of disease. I am a flight attendant so my symptoms I think are worse because of flying. This condition went away for about three months and after a terrible cold, flue and sinus infection it all came back. The constant feeling of just being off. The anxiety that comes with this is terrible. In the beginning I could not walk the airport, the mall was not an option no one understood. They all (doctors) wanted to put me on anxiety meds no one listened. I never took any meds I just kept digging. I am a lot wiser now I know that this will eventually go away. The funniest thing of all in this is that I feel the best when I am flying the problem begins when I get off the plane, I just feel off. I often get very scared that one day they will fing me dead in a hotel room. However reading this web page gives me great comfort. Thank You


Hey Chris - My dizziness started about 7 months ago. I came down with cold/flue like symptoms and strep throat. A few days later I noticed that something was definatly wrong when I was driving home. I couldn't focus on the road at all, but really wasn't sure what was wrong and thought it would go away the next day. Well sad to say 7 months later I'm not fully recovered yet. My ENT said that Vest. Neron. usually starts following a upper respirtory infection. Well mine did. How did yours all start. It's funny, because I always feel better in the morning right when I get up and usually at night when I'm at home. Anything like that with you or anyone else. Well better get back to watching the Oscars. Hope all is well.

Michelle


Hi everyone, I wanted to let everyone know that I did six sessions of acupuncture and it did nothing for me, however when this thing went away for three months I did grapefruitjuice. I would juice grapefruit with the skin on it. Put it in the juicer and drink it 3 times a day, I dont know why it helped but it took all the symptoms away. It tastes just terrible but it worked for me. You have to be careful if you are taking other meds not all meds agree wiht grapefruit juice. I now have it back again I just don't have the power to juice anymore. With flying so much I don't have the time.


Hi, dear friends!

Beata – What you are having now might be called Mal de Debarquement syndrome. Look attentively at the following link. https://vestibular.org/vestibular-disorders/specific-disorders/mal-de-debarquement.php No treatment can be suggested (same with other inner ear disorders) – only TIME and brain compensation. If your condition lasts for a long time and if anxiety and panic overwhelm you – nothing bad to give a try to anti-depressants! You said that sometimes you are fearful, that they we find you dead in a hotel room – of course YOU ARE NOT GOING TO DIE from IT. But you have a lot of fear! It is very-very understandable, giving the nature of symptoms you have.

Everybody - I am NOT AGAINST taking klonopin, or any other anti-depressants. On the contrary! If longevity of your symptoms is more, than several weeks (doctors promise you usually from the very beginning, that it will take several days or weeks) and you have a lot of anxiety, panics and fears on top of dizziness and/or vertigo – START taking anti-depressants, or klonopin, or similar medication!!!!!

Here is a link to a chapter 12 about Chronic Dizziness from The Consumer Handbook on Dizziness and Vertigo http://www.hearingproblems.com/index_2chapter12.htm

The chapter is written by Dr. Jeffrey Staab who is a professor both in Otorhinolaringology (ear, nose, throat) – Head and Neck Surgery and Psychiatry. This professor and researcher gives a very clear explanations WHY fears and anxiety CAN SUPPRESS the brain adaptation (compensation) process. So, fears and anxiety SHOULD be treated!!! Dr. Staab mentioned his two recent research studies on 84 dizzy patients who BENEFITED from SSRI medications (prozac, paxil, Zoloft, Selexa). Interesting, that among those 84 patients at least 1/3 did not have symptoms of panic or anxiety – only “pure dizziness - vestibular symptoms”. Surprisingly, those patients without panic and anxiety enjoyed the same positive results from their treatment. Now exact citation from Dr. Staab: “This suggests, that SSRIs may have a direct effect on chronic symptoms of dizziness particularly the constant 24 hours-a day symptoms that do not respond well to other treatments. We do not know exactly how SSRIs reduce chronic dizziness, but there are two possibilities…….(explanations). “

It looks like by medically treating our anxiety we CAN IMPROVE VESTIBULAR FUNCTION (diminish our dizziness!!!!). Something to think about. Or give it a try. There were REAL stories of dizzy people who benefited from anti-depressants. You can find them even on this page.

Hugs, Anna

P.S. I am still taking Paxil 10 mg a day (I have been on it for about two years – at the worst time took up to 50 mg a day). I am still improving (less dizzy, less positional vertigo, less headaches and ear pain, more energy, better mood). I am by nature a very self-confident and NOT ANXIOUS person. No panics, bad mood, tears etc. in between major bouts of the inner ear disorder. Completely different personality when this horror starts….


Beata – you said that you were on Grapefruit diet and that helped you. Isn’t it a God blessing, that you know SOMETHING, that definitely helps you?! Stay with this something, that helps you! So many people (including myself) do not know ANYTHING that helps them… No, I am wrong – I definitely know a great REMEDY for inner ear disorders - TIME and PATIENCE…..

Everybody – take care. Anna


Dear Michelle, Your story sounds very similar to mine. In Nov 2004 i had a cold then next thing i new the ground started bouncing up and down / dizziness. Did all the tests , MRI, holter monitors, TOE, ENG, Water in ear tests and was diagnosed with Vest Neuronitis. Anyway incidentally i was also found to have severe sinusitis, which i believe is somehow related to my experience. Anyway now i am 90% there, and really the only thing i get now is mild bouncing sometimes when i walk. Have come a long way, with the worst was betweeen Nov04 to Feb05. I work as a proffessional in front of a computer, which sometimes makes me feel nauseous but i am ok. I did the VRT therapy, and once i got to about 80% i began walking and cycling which my ent recommended. In Nov 2005 when this first happened i tried to wait for this thing to be over before i returned to normality. I waited 3 months then forced myself to do everything i had been doing before..... The reason i say this is that this is the kind of disease i think that you can wait for yourself to get 100% better, however unfortunatley it may not happen. You may then find yourself in a "holding pattern" that may last a long time. There is hope....i work, have a beautiful wife & 8 month old baby, and normality again. Anyway keep well,

it really does get better.

Almost there Aussie


thanks anna for responding, I just wanted everyone to know that three years ago when this stupid disease got me I could not do anything. I love to run I could not I loved to shop I could not and I loved my job-flying. I got so mad, I was 32 full of life 3 kids and useless. It gets me even madder that all these doctors specialists did not have a clue. When I got angry I went on the treadmill ran my 5 miles almonst passed out, but I refused to give up. It is very true in this disease that the brain learns to adapt and however scary I had to do all the things I could no longer do. I flew more than ever I went shopping more than ever-went to the hospital once after shopping.I walked my dog and looked drunk. I did not care I knew that if I could not do all those things I did not want to live. I learned how to detach, I would say ok anxiety is comming Beata detach. Aknowledge it for what it is and then detach. Breathing really helped and research really helped. I know now that this is a journey I now smell flowers look at every good day as a blessing. I suck in every minute . That what does not kill me will make me stronger. And I am so much stronger. I will beat this and so will everyone else you just need a strong will and lots and lots of patience. This website is a healing process for me. Thanks


I also wanted to pass this on, what really also helped me is a huge antioxident diet. Lots of blueberries, strawberries, pomogranite-huge!. I ate cloves 3 cloves -antiviral 3 times a day. Cinnamon in everything. Lots of garlic I have garlic everynight with milk and honey. Juice your veggies parsley very important.kale eat broccolli spinich fish 3 times a week. Stay away from dairy for the most part slows down the immune system however kefir very important. Eat lots of fetta .What I found most helpful is to follow a hypoglycimic diet. I eat every two hours small portions keeps the adrenals steady. No sugar jumps very helpful with anxiety this takes about a month to kick in. Never let yourself go hungry. Always eat protein and carbs together.no sugar just honey-organic good honey I bring mine back from europe. Till now I cannot have wine or alcohol. this all takes time but very helpfull. And if you are very thin becareful with the hypoglycimic diet you will loose weight very fast. When anxiety kicks in your body naturally retains fat around the belly and thighs. I hope this helps some. Oh and don't forget the flexseeds , white not the brown ones grind them down and have them in your kefir.


aussie and whoever....im starting to think sometimes it doesnt get better....the first two times i had this i got back to 100 percent within 2 to 3 weeks........this is the 3rd time ive had for now 1 year and 1 month and i can do everything like drink run on treadmill etc...but the spacey head feeling will not go totally away like it did last time...and it is starting to concern me that it will never....and it sucks because i still do get tired here and there and i know its because of the spacey head feeling...

CHAD (GOD HELP US)


Hi everyone-

Does anyone have any suggestions on how to make yourself more comfortable in bed? Some nights I cant seem to make my head comfortable, even with 3-4 pillows. Its a cruel twist of fate, but the thing I most want to do is rest in bed, but often laying backwards brings on the worst symptoms, and of course, laying sideways or on stomach is TOTALLY out of the question.

My balance problems and dizziness are much much better, but I cannot seem to shake the head thing in bed. And it drives me crazy.

Appreciate any comments from people going thru the same thing.

tim


hey tim. i seem to have the same problem. i used to wake up sleeping in the way im used to ...on my stomach and on the side and wake up feeling so sick from it after getting this ear thing. but now i can sleep on either side and stomach usually with no problems. it didn't take to long either. im just stuck with the feeling of woozy back and forth in my head. i think all you can really do is wait it out. since everything else has gotten better that will too. did you do vrt? what was your diagnosis?


hello

i just talked to my neurologist and he went over my eng results and this is what he said

he said that the eng looked normal until he reached the caloric part (the water part) when they did this i really didn't feel anything or dizziness and he said that there was really no responce to the water and that the right side was weaker than the left.

now i know that eng caloric tests can be inaccuate but is that part of the test enough to prove that i have inner ear problems?


also if the test is done while the infection is present would it be the reason it came out abnormal. the guy said that the test indicated a weakness. would that have been the same after the infection cleared up? im confused on the matter


Simply watching many people on this website in their progress gives me a thought how people become VERY STUBBORN and VERY STOIC while going through THIS. Beata - how can she fly with THIS? Sounds unbeleivable to me.

Chad - you got rid of MOST of the symptoms you started with (I have been watching your regular posts!). The last one you say is lightheadedness which is more of "brain discomfort from visual activity around you". It is - I am convinced - the last stage of our brains compensating.

Tim - this spells of dizziness in responce to certain positions in the bed - of course, it is very unpleasant. The diagnosis BPPV (Benign Paroxysmal Positional Vertigo) and the explanations that it is caused by crystals of calcium carbonate moving inside the semi-cercular inner ear channels sounds very questionable to me. As for me this BPPV come in my life "with no particular reason" for several months, then disappear for many years without any treatment, then come back suddenly for several months and again disappear for many-many years. Such a pattern in my life.... Frankly speaking I stopped paying attention to this thing (being dizzy in the bed) long time ago, just try to ajust the position of my head in the bed as comfortable as possible. The most important thing to me is to be balanced while walking!

Rich - the owner of the page. How are you doing? No dizziness, I hope! Thanks for keeping this webpage! (I know, that you UNDERSTAND what is TO BE DIZZY)

Anna


Hi All

Chad it does get better.We both pretty much share the same symptoms and the spaciness has improved loads for me over the past 12 days-perhaps it is just a good patch- I dont care because Im really enjoying it.After 7 months things are really looking up for me.Im going back to work in a couple of weeks.I cant wait to get things back on track.

I would say Im about 98/99% most of the time.It is just my vision that gets me here and there and slight spaciness.Most of the time I dont even notice there.

Due to the nature of this illness Im sure I will have a regression, but now it doesnt worry me because I know it does get better after a bad patch.

I reckon at this rate I could nail this thing in under a year.

Chad- Your symptoms seemed to have improved loads-the spaciness will gradually leave.

Deus


Hey Chris -

Yes, I have been doing vrt at home and it seems to have helped amazingly well with balance and dizziness, but doesnt seem to be doing much for the head positional side of things in bed. But maybe I just need to give it more time (as if I have a choice!).

I have had the Epley done twice in doctors office and I do the Brandt-Dorff excercises at home. I was thinking maybe doing the Epley at home but everything I have read suggests only doing this once or twice, not on a daily basis. Is anyone else doing the Epley at home every day?

thanks, tim


I see tons of floaters in front of my eyes when I am outside or stop and stare at something...this is not normal and is really worrying. I am tired of feeling like I am on drugs all the time and can't come out of it. I guess that I am having a bad day....I really hope that there is some way for this illness to end b/c the longer I have it, the crazier it makes me feel. Hope everyone else is doing okay.


hello

i went to a psyctrist today and she looked at my health history and all. she seems to think that i its all anxiety after i told her my history of anxiety attacks. then i told her one day my anxiety just got really bad worse than ever a couple days in a row and she looked at my charts and saw that iw as never tested for any thyroid problems. so she sent me down to get a blood test and i will see the results in a couple days. she put me on paxil cr and i start the ssri treatment tonight. wish me luck! she was pretty shocked they never checked for that. apparently thyroid problems can really cause some of the exact symptoms i have.


Hi guys - I have been to a nutrionist who made me do a adrenal saliva test - www.iwdl.net: I am taking adrenal supplementation she gave me but also gonna chat to my doc back home - As the luck i have had here with NHS docs has been zero. He might give me something to take to! I did this becoz i asked a doc online about chiro & if it would help with labs... this was his response: Answer these questions: Are you often dizzy? Are you tired most of the time? Are you having sleep disturbances? Have you gained weight and are you having trouble losing it, despite diet and exercise? Do you have low sex drive? Are you moody and irritable? Do you feel depressed or do you have to take anti-depressant medication? Do you have food/sweets cravings? If you answer yes to any or several of these, you may be suffering from adrenal fatigue which could be causing these symptoms. I have seen patients with symptoms such as yours who have undergone various treatments and come to me for acupuncture and chiropractic to try to resolve the problem. SOOOO... there u go guys! Chat to your docs about it..The SALIVA test - most docs dont even suggest!

They only send u for blood tests...

The DEPRESSION and FATIGUE might be becoz of this! (i definately had labs to start..but now a few months on i just think theres something else going on...) deeeee


Lauren,

I have been suffering with Lab for 3 months and began noticing floaters about 2 months in. Very disconcerting to say the least. Hang in there.


Hi, everyone

Tim - Epley is not something that you are supposed to do on a daily basis. Actually Epley manouver helps ONLY if you know exactly where your calcium crystals are located. But the problem is that no tests can show this for sure. I read several research articles recently - they doubt either the harmfulness of these crystals, or even the fact that they exist for a long time in semicircular canals. It looks like if those crystals exist - they can BY THEMSELVES dissipate in other chambers of the inner ear where they do not produce dizziness.

Chris – Good luck with Paxil.

Beata – it is something unbelievable that you can fly with dizziness. On the other hand this illness is so strange, that I have heard from other sufferers that they feel “almost normal” when they ride in a car and feel dizzy again when getting out of the car. Or one lady just loves her rocking chair because its movement get in resonance with those crazy movements in her head and she feels almost fine. When I try to tell those stories to my husband (good, understanding and very supportive guy, by the way) he says, that those people have “a lot of imagination”. His remarks make me extremely angry……

Lauren – those floaters in your eyesight – have you checked your eyes recently? Of course, you are too young to develop any changes in your eyes like glaucoma, but just in case, check with your eye doctor.

Everybody, take care.

Anna


well i started the paxil cr. i did indeed get some side effects but nothing too bad. i couldn't really sleep last night and i woke up with an upset tummy. but thats about it. they said the side effects go away with treatment...i hope thats true.


Hi,

Anyone tried ginkgo biloba, supposed to be good for vertigo? Anna, I think a while back you were going to try it?

Sandie


Chris - Good luck with the Paxil. I tried it for 8 days and stopped. I felt more nauseated and dizzy taking it. I started physical therapy two weeks ago doing vestibular exercises and it really seems to be helping.

The neurologist tried to tell me I was having mild panic attacks and that was why he prescribed the Paxil. This was after he made me do an exercise hyperventilating for two minutes to see if it would make me dizzy - holy cow, anyone doing that for two minutes would be dizzy!

I am taking Anna's advice and will let nature take its' course. I also am not going back to this neurologist again!


kathy

yeah the last two days have been weird on paxil but you have to keep taking it and the side effects go away after a week or so.


were you on paxil or paxil cr? paxil cr is suposed to be much easier and studies show a lot less people have stopped for side effects.


Sandy - I started Ginko last week and I noticed some immediate improvement. of course, it might just have been coincidence, but I have read good thigns about Ginko and even if it doesn't help it certainly cannot do any harm.

Anyone who is having motion sickeness symptoms might find those wristbands they sell for seasickness help. Ive been wearing those the past few days and do notice a difference when I am in a moving vehicle.

I am not feeling too-too bad as I enter month two of this thing, but am still very tired, have nausea, headaches etc. I just am praying it eventually gets better and trying to be positive.

Really appreciate this site and talking to people.

thanks, tim


Hi, all

Dee – saliva, adrenal glands are responsible for your dizziness? Whatever is possible… Keep us informed.

Sandie – I looked up in my diary and found when I started taking Gingko Biloba - in August 2005 (advice of a long-term sufferer Tom from this site – thanks, Tom!). I have been taking 240 mg every day no matter what (split in two doses – morning and evening). I did not find any side effects, which is good, and I know that such things should be taken on a regular basis for a long time. By the way Ginkgo Biloba is also mentioned as a good herb for enhancement balance in Consumer Handbook for Dizziness and Vertigo. (my favorite so far).

An update on my situation - I accepted long time ago (actually, in June 2005, when my condition forced me to quit my job), that my fifths bout of IT can last longer, than any of the previous relapses. I am on my 28 th months of the 5th relapse in 34 years (first hit by the inner ear disorder when being 20 years old). I am doing a lot BETTER – no any comparison with a half-dead person - bedridden for four and six months in 2004 and 2005 respectfully. Of course, I am far from normal, but I can definitely tell that I TOOK my illness under control because I am still improving. Was it Ginkgo Biloba, that helped me? Of course, not! I would say more correctly – NOT ONLY! I think – it was a COMPLEX of many things. It was TIME, my patience (my personal patience, not my family’s – they ARE impatient – they are more used to me being active, successful, adored by everybody), adopting a low-key lifestyle (no working – I just could not – I literally collapsed several times at work), no noisy places – many times I span badly and almost threw up in Wal Mart and restaurants ), vitamins, a lot of rest, walking ever increasing distances in our quiet neighborhood (on “bad” days I just DO NOT go for a walk and DO NOT WORRY about missing a day, or even several days). I am not pushing myself anymore – IT ALWAYS MAKES ME WORSE. I try to follow my body’s instincts. I am finally allowed to say NO and not take part in activities, that I FEEL could make me worse – I will try these activities later!

Kathy – you are right – I adopted a way, that allows NATURE to take its course. And we better HELP mother-nature, than start taking “magic pills”, or pushing ourselves harder and harder in order to recover before the “dead line’. It can make our situation WORSE. (No setting “dead lines” – what shall be - shall be!)

Chris – Watch side effects for Paxil – I do not have any, but everybody is DIFFERENT.

Rich (the owner of this site) – how are YOU doing?

Yours, Anna (now I am reading a new book Headache Help by Lawrence Robbins, MD, because my headaches are still quite bad)


Hi Anna,

At the moment I'm not doing too well, unfortunately: I've had a really bad cold for the last few days. I still haven't had a return of dizziness though, and this is actually the first time I've been ill since I had labyrinthitis.


Anna thanks for the info, much appreciated. I took my first ginkgo this morning, i'll see how it goes!

I'm due for my first rehabilitation session on Friday so hopefully I will get my first set of VRT to do after nearly a year of waiting. No wonder it takes so long to get over this thing, we just don't get help quick enough.

Rich, I caught a cold a few weeks ago and this is what caused my relapse. My cold had all but gone and it hit about a week after. I have been really off balance, more so than last year, and have been unable to work. Hope this does not happen for you, good luck!

Sandie x


Rich - you should NOT anticipate the dizzyness coming back every time you get ill with cold, or allergy, or anything. Big chance, that it will NEVER return back. But anyway, take care of your health, Rich and everyone.

Anna


Hello all; I see the ENT on Monday just to see how I am doing. And I am doing well, most of the time. I must admit that I am apprehensive. I hate the tests so much. I told my husband this and he just does not understand. I know this group does. thanks, just needed to say it to someone. Lorraine


Hi Tim,

Glad to see that you think Ginkgo is helping you. I have read so much about it recently and it is all good stuff so I am giving it a try!

Anyone actually fell over with being off balance? I often feel as if I am going to fall but I don't. I think that is one of the most frightening things, tinking you are going to hit the ground! When I was having my worst balance problems I actually felt like I was diving to one side but my husband says I wasn't moving an inch!

Sandie x


Anna - Do you have problems with reading too? I have hardly been able to read anything for two months without feeling nauseas and headachy, like trying to read in a moving car. Is there anything which helps so you CAN read books?

Also, Im thinking about a anti-depressant as it apparently helps with balance and dizziness, although the doctors don't know why. Any thoughts?

SAndie - I often feel like I am GOING to fall over but I never do, although I have heard of people who are so off-balance that they actually do fall down. Generally though it is just a sensation and doesnt happen to msot people. Knowing that you are not going to fall helps you cope I think.

The most frustrating thing for me is having several days of improvement and then WHAM! You wake up feeling horrible for a whole day. But I do feel much much better than I did a month ago...and all the symptoms are less severe then they once were, so i am praying this means it is gradually waning and WILL LEAVE!

Thanks, tim


Nikki -

I read one of your posts from last year about "wondering if your drinking and all the toxins from it" had brought on your vestibular problems. That thought ahd occurred to me too as my lifestyle over the past 20 years has meant quite a bit more imbibing than is generally recommended.

NOw, I am much much more moderate, but I wonder how common it is for drinking to cause Labs/BPPV/vestibuler neuritis? I have certainly read that "toxins" in excess CAN cause this. Its a terrible thought though to think you might have "done this to yourself" through the simple act of cocktails! And what a price to pay if it IS the cause. But of course there is no test to determine what exactly is the culprit, is there?

tim


Final thought for the day!

I don't hear anyone with extreme dizziness talking about a medication called "SERC" (Betahistine Hydrochloride). It is not available in every country but in Canada I was prescribed it and it seemed to do wonders for me. Is it available in UK?

The other great thing about Serc is that it is the exact opposite of Meclizine etc and all the usual medications precribed, which are all ANTI-histimines. The chemical makeup of Serc is as near as possible to your own body substance known as histimine. Histime is a natural blood dilator whereas antihistimine tends to constrict blood vessels.

Serc is so natural to the body that there are no side effects whatsoever.

Anyone tried it? perhaps you should ask your doctor as it is a great alternative to the sleep-inducing side effects of the typical drugs prescribed for dizziness.

tim


Yeh we have it in the UK, it made no difference for me.Also be careful as such drugs can inhibit the compensation process and delay final recovery.

Ringo- all bummed out and hates labrynthitis

p.s alcohol doesnt cause labrythitis- simple myth- otherwise it would be much more common.

Have a drink- it will take your mind of this crap


Hi everyone, I'm new here I found this sight when I was looking up leg twitch with labrinthitis. I was just diagnosed with labrinthitis the weekend after suffering from dizzeness an other stuff for a couple months now. I was put on MECLIZINE and GUAIFENEX. Now I have this chronic leg twitch along with all the other "wonderful" symptoms. I went to see another doctor today and he doesnt think that it's labrinthitis. I'm positiveit is I'm experiencing every sign, I also, a couple years ago had this constant pluged up ear feeling, like when your going up in an airplane. My ear would always hurt and it finnaly went away about a year ago but left me with mild to severe ear pain and a muffled sound to everything.then, like I said, the dizzyness and tremors and lightheadenes started and it's just been getting worse. Is the doctor who said I do have it right or is the one I saw today right? I'm so confused!well thanks for reading:o) troy


Hi all, haven't posted any messages for a while as I've been busy focussing on recovery, i.e. lots of VRT!! Well it all seems to be working, at long last. Vision has much improved and I can now read for long periods of time, thanks to gaze stabilisation exercises which I've been doing religiously for 6 months now, up to 20 times a day. Its time consuming and exhausting but really has paid off. I'm still having lots of problems with stiff muscles and joints, along with numerous panic attacks which I can't really understand as the labs is slowly going. GP prescribed me tranquilisers but I won't be taking them. It helps just having them with me though - just in case. I've got this terrible tightness in my side which does relax when I bathe, so proves its tension. I took SERCs for 4 months and they do stop the brain compensating. The only way forward is to induce the dizziness which helps the brain to unscramble all the mixed messages. I'm still not able to work yet but had another visit to the office last week and it wasn't as bad as the time before. Finally got an appointment with a neurotologist 28 March and balance clinic, all on same day. It'll be exactly 6 months on that date since this all started. Trying to stay positive and hope you are all having a better time of it.


Hi Tim,

Thanks for the info. I am at the moment having a relapse, and yes I agree, I can feel great for a couple of days and then 'wham', it's like being back to square one!. That's the way it is with this illness though. I've had it over a year now, went back to work for nearly 6 months but was never fully recovered and now I'm off work again. I don't have the full range of symptoms this time, just feel terribly off balance, some days much worse than others. At the beginning of my illness, I too could not read, it was terrible. After about two months I found it was not too bad but even now sometimes I have to hold the book in front of me rather than look down at it and I find that helps.

Troy, have a look at www.labyrinthitis.org.uk, link at the top of this page. This site lists all the symptoms of Labs, but it does sound like you are a sufferer.

I bought one of those cross exerciser machines yesterday. I thought it might be a good way to bring on the dizziness/off balance feelings. First I tried it in the shop and when I got off I was rooted to the spot. I felt like if I moved I would fall over. I took this as a good sign and purchased it. Frances, as you say, you have to induce the dizziness to get the brain to unscramble the mixed messages. Anyone else used this as a means to recovery, or have any feelings about it?

Take care everyone.

Sandie x


Hi, Anna and everyone. Thanks for responding to my comments. Yes AIED is autoimmune ear disease and I think it was more of a speculation than a real tested result. Although I have had almost every test in the book and the only thing I've been told is that its probably a viral infection that caused my hearing loss, but they never say what exactly. My story is very long but I will share as much as I can. I worked as a substitute teacher with hopes of returning to school to finish my education as an elementary school teacher. But I have not worked since Dec. '05. I have been known to have migraines before also severe seasonal allergies: hay fever and sinus problems. I may also be dealing with chronic fatigue or fybromyalgia. So I am for the most part always tired and achy. Which is why I took a lot of Ibuprophen. But I have not taken any since July 2005 when it seemed that the last dose sent my head whirling. That is why I felt that ibu could be partly to blame. I have had all the symptoms that most of you guys have expressed like headache,dizziness, fatigue, blurred vision(by the way, I like that description of looking through someone else's glasses. perfect discription!) also, vomitting, nausea, twitching muscles, noises in the ear and maybe it is not lab but it is comforting to know that I am not alone with these symptoms. And despite all these problems including my liver problem, Doctors say this all strange for a woman as healthy as me. What do they call healthy? I am almost a year into the dizzines, off balance, intermittent nausea, blurred vision and more which has progressed to a tolerant state but has not completely disappeared. First, I lost the hearing in my left ear kinda gradually over a 2 week period. Then I had another attack maybe 4 months later and lost the hearing in the right. And no one really knows what happened. Now I am considering cochlear implantation. Thanks for the note about MAV. I will check it out. Also about the saliva adrenal glands, I get this busy energy and crave a lot of sugar as well and then I crash. I don't know where I fit, but I'm praying it will be revealed in time.


Hi, Anna and everyone. Thanks for responding to my comments. Yes AIED is autoimmune ear disease and I think it was more of a speculation than a real tested result. Although I have had almost every test in the book and the only thing I've been told is that its probably a viral infection that caused my hearing loss, but they never say what exactly. My story is very long but I will share as much as I can. I worked as a substitute teacher with hopes of returning to school to finish my education as an elementary school teacher. But I have not worked since Dec. '05. I have been known to have migraines before also severe seasonal allergies: hay fever and sinus problems. I may also be dealing with chronic fatigue or fybromyalgia. So I am for the most part always tired and achy. Which is why I took a lot of Ibuprophen. But I have not taken any since July 2005 when it seemed that the last dose sent my head whirling. That is why I felt that ibu could be partly to blame. I have had all the symptoms that most of you guys have expressed like headache,dizziness, fatigue, blurred vision(by the way, I like that description of looking through someone else's glasses. perfect discription!) also, vomitting, nausea, twitching muscles, noises in the ear and maybe it is not lab but it is comforting to know that I am not alone with these symptoms. And despite all these problems including my liver problem, Doctors say this all strange for a woman as healthy as me. What do they call healthy? I am almost a year into the dizzines, off balance, intermittent nausea, blurred vision and more which has progressed to a tolerant state but has not completely disappeared. First, I lost the hearing in my left ear kinda gradually over a 2 week period. Then I had another attack maybe 4 months later and lost the hearing in the right. And no one really knows what happened. Now I am considering cochlear implantation. Thanks for the note about MAV. I will check it out. Also about the saliva adrenal glands, I get this busy energy and crave a lot of sugar as well and then I crash. I don't know where I fit, but I'm praying it will be revealed in time.

Lisa


hey dee, I had the sme test done for adrenal glands, just remember that when you develop anxiety from this you are going to have adrenal gland stress, because the adrenals react to anxiety. So its very helpful to follow the hypoglycimic diet. However this ear thing is what it is and everything else just comes with this. I think my thing is almost over, I am just left very very tired I dont't know if its from the 12hours on duty inside the plane (this weather past few days did not help) or if this is the end stages of this. My floating feeling 90% gone. I can't believe it I remember when I could not walk the terminal at the airport or walk inside the store. I hope this thing never never comes back I hope everyone is doing fine


Chris - I was taking regular Paxil 10 mg. and I'm into my 5th month with this. I am feeling alot better after having gone off it but perhaps I am almost at the end of the tunnel. Yippee! What a celebration there will be when this is finally gone.


you felt better after coming off the paxil? that seems weird but im glad you feel bettter. im on paxil cr and its an ssri which has been proven to make it better.


In response to your question about Drinking and Labs. I was presumably fine after my last bout -- completely 100% -- Then I went to vegas and drank quite a bit... When I left there 4 days later, I was sooo dizzy, and I had a revist of my labs -- It only lasted 4 weeks, but it was still hell.


Hi, guys

Chris , Kathy - Everybody is SO DIFFERENT, that it is very difficult to tell in advance how starting taking a medication, or going off it will affect your situation. Paxil (and other SSRIs) or SERC (betahistine) can make some people better, in others it might delay compensation (no scientific proof yet!), others probably will not notice any chnges at all!

What to do? TRY, TRY and TRY (avoid side effects of course). TRIAL AND ERROR approach is absolutely NORMAL - that is what all doctors and medical scientists adopt now as golden standard in treatment of dizziness (as well as in treatment of headaches).

We - dizzy sufferers - are not patient enough to try again and again. We want FULL RECOVERY quickly, quickly, quickly..... I know it very well about myself - getting extremely impatient and quitting medication, that I just have started to take because it does not work immediately, or quick enough!

Troy - your condition and the history of it brought me a though, that maybe you have a perilymph fistula in your ear (or both), probably in the ear which has impared hearing. Have a look on the Internet. This condition is hard to proof, it is controversial. But keep in mind, that if you have THAT condition - you should be quite careful with your head (see possible limitations of activities when having PLF)in order to achieve full recovery.

Tim, Frances, Lisa - For about a year and a half I would have my sight all the time either "split", or like looking into my grandmother's eyeglasses, or looking into a shattered glass. I absolutely could not read at times. What to do? I would stop while reading very often (as often as my body required!) - just would close my eyes and try to relax for 10-15 minutes visualizing something pleasant (often green woods, or mountains covered with snow - whatever YOU like). Then I would open my eyes and would try to look on the text again - if it would feel better - then I would continue my hard way through the book. Frances mentioned GAZE Stabilization exercises for improving vision functioning. I have heard of them, never tried, but it looks like it’s a good thing.

Anna


hello

today is one week since i started paxil cr. still getting some werid symtpoms. don't know if its meds or inner ear or what. what i am notcing is that my balance is good but my eyes feel tired alot and ive noticed in the last couple days that if i look over to the side alot or at something too close to my face or at something too long i feel off. do you think the dizziness is coming from my eyes now? what kind of excersises can you do for that? i know the one where you take a crad or something and follow it with your eyes and than look in the opposite direction and shaking your head back and forth while looking at the card. any others?

dues how are you feeling? did you ever get any weird eye feelings?


Hi Chris

I was doing very well until the past sunday and have hit an average/bad patch unfortunately.My vision is one of my main symptoms now-just kinda off vibrates a little when I focus on things.

Apparently this is one of the last symptoms to go so im hopeful.Still a bit spacey and dizzy too but it will go soon hopefully.

Im at 7 1/2 months and dont reckon i will be cured until atleast a year.Its just a shitty slow process nwhich drives you round the bend.Argg just so frustrating!

Keep it real, exercise and try and enjoy life as much as possible

Deus London,England


Hello All,

As harsh as it sounds, I'm so glad to see and read so many different cases.

I was first told by my GP that i had labs 7 weeks ago and thought the Doc was having a laugh at me, I didn't want to or even believe there was such an illness neither did my Husband nor my friends noone i know had ever heard of this before. I went on mad, random searches for the causes and how long it lasts etc. It bought tears to my eyes when I discovered that this was a very real problem and now I will have to deal with it myself. I read it only lasts for upto 6wks and even then i was worried about my job. (See i'm a dancer /performer and just landed a huge job in a massive production, on stage 90% of the show and loved every second of it. This was something i've been waiting and training most of my adult life for. This was my big break.) I had been giving a sick note for a week and told to rest. A week went by tried to go back to work and it happened all over again, I lasted 3 days in the show then on my back, tried again the following week, same thing again, out after 2 days this time. Had a further 2 weeks off (by now the show is only mildly annoyed at the situation as well as my fellow cast members whom are having to cover my part). After 2wks I felt strong, I felt as if i could take on the world let alone my role in the show. All my symptoms had eased not fully but copable, OH HOW WRONG I WAS!!, this time I managed nearly 2wks at work and now I'm back at home resting, dizzy, very down and on the verge of losing my fab job. No one at work truly understands because I don't look unwell and can do the job sometimes. I even found myself questioning, is it really me and Lab or it is just i can't handle my job. I know deep down that I have very real symptons, dizziness, sick feeling, ringing ears, tiredness, unstable on my legs and I have been back to my doctor time and time again. I've have noticed it is especially worst when I'm at work. I have an 8 piece live band, pumping out extremely loud music behind me 8 shows a week, 6 days a week, 10- 15 radio mics on mad frequencies and i think can this be the cause. Has anyone had a case of prolonged loud noise making things worse? I've tried Stemetil and am currently doing the Cooksey exercises and found that it is not truly helping. The doctor has sent me for blood tests which i have to do tomorrow, what happens after that? Where do I go from here medically, do I demand that the doctor refer me to a specialist? I feel lost and very confused and need some advice if anyone can offer it.

A sad fallen starlet.


Hello Anna and everyone, My Ent has finally decided that I should see a Medical Dr. because he/she will be better able to diagnose my problem. He still believes it is AIED. I did read up on MAV. Some of the symptoms sound like me but almost everything I read seems to have some kind of connection to what I'm going through. For the most part, because of my hearing loss, I am off balance most of the time. Some days worst than others. I am learning to read lips better but it is very tiring esp. when my vision is impaired. I find that if I either tilt my head back or forward and look at things, my vision is almost normal. My main concern is that I find the cause of my symptoms. Don't want there to be some unforseen problems that arise in the future. But nevertheless, I pray that everyone will find sweet peace in the midst of these storms. Even in all the terrible days and problems, find something to be thankful for.

Lisa


Hi, dizzy people

I found one more from a numerous sites: http://www.onbalance.com/patient_info/index.aspx where they stress again and again the COMPLEXITY of human balance system and balance disorders. They stress also the NECCASITY of a MULTIDISCIPLINARY APPROACH in treating of balance - vestibular - inner-ear disorders - those words can be used interchangably. They have information on balance clinics in the USA - I did not find a single one in Oklahoma where I live. I do not trust their "knowledge" anyway, so it does not matter if any clinic exists somewhere close to my OK town. It is not PESSIMISM - it is very healthy and logical SCEPTICISM. I will continue to recover in my own pace - walking in quiet places , eating well balanced diet, taking medication for my chronic sick-sick headaches, spending time with my family, not paying attention to "little things". Since I resigned from my great job because of my condition - I do not worry about anything - EXCEPT LIFE AND HEALTH of my family and myself. Health and safe life of my closest friends' families are "included" in my worries list as well - it is the way I am.... Money, carreer, envy or jelousy of people, my personal appearance and many-many other things are definitely excluded from my worries list.

Annie - sad fallen starlet - unfortunately loud noises especially prolonged loud noises are one of the worst enemies of our ears including our inner ear where the balance system is located. Many personal experiences will show you this sad fact. As for me, I CANNOT keep balance at all being in a noisy place - I really start spinning and have to leave the place before I fall, or throw up. In a quiet place I can even walk rather "quickly", or even set a table for breakfast. But I cannot wash dishes because the sound of running water makes my dizzy and very unsteady. NOISE - BALANCE connection is direct.

Everybody - stay calm, strong, stubborn and patient.

Hugs, Anna


Hi everyone, I do hope these gaze stabilisation exercises are of use to some of you suffering with visual problems. My eyes have been a constant worry to me but with lots of perseverence my vision is now much, much better. If you are having problems balancing unaided, these can be done in the safety of your own home. Sitting, if preferred.

GAZE STABILIZATION

-To be carried out 4 times a day in a safe envoironment, in a standing position, with the target at arms length. -Each exercise should be carried out 20 times, at a speed that ensures the target remains in focus at all times.

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

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

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

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

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

You are supposed to do this every day, there should be an improvement after a few weeks. Don't worry if it takes longer, it was 5 months for me.

Frances


IS ANYONE BETTER????I HAVENT HEARD OF ANYONE GETTING BETTER SINCE IVE BEEN ON HERE 1 YEAR AGO!!!!!!!!!!!!!!


I am getting better Chad.Keep the faith!Lots of people have just stopped posting.Remember Cop? he has clearly recovered.

Deus


Chad - I am doing progressively better (with ups and downs, of course)being on the 28th month of IT.People usually quit posting when they recover because they do not want to return to bad memories - actually to the NIGHTMARE. So it looks like nobody had full recovery.

Everybody - please, give your fellow sufferers a WORD that YOU WILL POST your SUCCESS STORY when fully recovered, or close to that.

Frances - this gaze stabilization exercises are exactly what we all need! Actually, I always do the same things with my eyes while slowly walking on a lawn in our quiet neighborhood. For targets I choose the top of a high tree on the horizon, big stones close to me, or anything remarkable. I feel very safe while doing gaze stabilization exercises on the lawn because if I fall (which actually never happened!)I will not hurt myself. Anna


Hey lisa -

You say that you may also be dealing with chronic fatigue or fybro......

How do the doctors prove this?

I dont get dizzy too much - except at the office - and i can only do that once a week -

Otherwise i am just very fatigued!

in the beginning i had nausea every morning and dizzy walking to shops ect everytime, and now nausea gone(touchwood) and dizzy only sometimes, although fatigue all the time, and more dizzy with fatigue..

so thats why i am starting to wonder what else might have started after the labs - i might have more things going on..

i am not better guys, i have had a few weeks here and there where i have had more energy but otherwise after 9 months,,,no major improvement..

deee


Hi all -

In response to Chris regarding Paxil, the side effects printed on the bottle were dizziness, blurred vision and nausea. I had a minimal amount of blurred vision prior to taking the Paxil and it got worse while taking it. I also felt more nauseated. So it was clear to me that I didn't want to take it any longer (after one week)and the symptoms subsided after stopping. If your symptoms don't improve, tell your doctor.

I am on my last visit to physical therapy (PT) today and the vestibular exercises they have given me seem to be helping. As Anna said, the best one is walking around outside while turning your head slowly from side to side. You may benfit from a couple visits to PT and they can show you the exercises and give you a printed version to work on at home or at work. Another exercise I found helpful is just tossing a tennis ball up in the air and following it with your eyes. I can juggle a bit, so trying to do that seems to help with the hand-eye coordination.

I think the biggest help in all of this has been trying to maintain my sense of humor - and trying to keep my life as close to normal as possible. I still work out and go on the treadmill, it's kind of a rush actually and I have to hold on alot, but I still do it. I also occasionally have a beer or a glass of wine - just because that's what I did before this all happened. We just can't give in. Although, I thought I was going to before I found this website!

Happy St. Paddy's day to all!


i will definelty post when i get better!!! hearing that people did is what keeps me going!!


Chad - I am doing better too. Month two and especially in the past few days I have felt significant improvement.

the only thing is WIL IT CONTINUE? So afraid of another setback - jsut when you think youa re feeling better you wake up feeling ill.

But everything, even though still rpesent, is reduced in severity from what it was a month or so ago.

tim


Chad and all,

I am getting better and better after 13 months. My symptoms are very minor now - the worst of it being the anxiety "waiting for it to come back". I am at the point where I have 2 or 3 nearly symptom-free days and then a minor set back. The minor set back is nothing like those horrible symptoms of the past - believe me. This thing hit me very hard in the beginning and for a very long time - it is gradually going away - but it is going. My ears were extremely clogged with pressure for about 11 months and now are clear. My eye fatigue has gotten much better, almost gone. The major dizziness/vertigo and brain fog are just about gone too. I have moments of off-balance here and there but it doesn't bother me (compared to what I already went through). My eyes will still jump slightly from time to time but that doesn't get to me anymore. It is very minor compared to how it used to be. Even the tinnitus is going which I am extremely grateful for as that seemed to bother me greatly. In fact, I'm having a symptom free day so far and I don't notice much tinnitus at all. The depression is lifting but I will admit that I am still anxious and nervous at times - I think that's because I am still frightened of it coming back. I don't find myself thinking about all of this nearly as much as I used to. Nowadays, when I do get a minor setback, I just kind of roll with it because the pattern is that it doesn't last for more than 2 or 3 hours and then I get several days of feeling very good. So the down swings don't bother me too much anymore. I can say that I was in very, very bad shape for about 8 months and then things started getting better slowly. Very slowly. Then, for the next 4 months, my symptoms lessened in frequency and intensity - again very slowly with daily ups and downs. Still very tough but not like it was. Now for the past month, I have had many days of feeling just about normal - although I've forgotten exactly how that feels. Yes, I am still "fuzzy around the edges" but I am hoping that will go soon too. Please keep the faith and try to remain in good spirits. This has been one incredible nightmare for me that I'm sure I will never forget (although I will try). This has changed many things in my life and made me slow down and relax more and take things more in stride. For that, I am thankful.


Chad

My symptoms are certainly lessening, although it's a really slow process. I think the main thing is not to let the anxiety overtake the labyrinthitis. Easier said than done though because nervousness can cause the dizziness to worsen, it's a vicious circle really. I noticed when I visited GP this week that I could sit quite comfortably in the surgery without everything moving around. I could read the messages on the notice board and people coming and going didn't freak me out. Just 4 weeks ago it was still a bad experience when going to see GP. I'm confident going to shops now and can read the 'sell by dates' on the packages. At least I know I'm not buying out of date food!!!

Keep strong everyone.

Frances


Just thought I'd share this site with you all which I found whilst trawling the net for more info. I don't know how good it is but might be helpful.

http://en.wikipedia.org/wiki/Labyrinthitis

Frances


Have just found this site and been wading through all the messages to try and find out whether I have the same symptoms as everyone else. There seem to be so many variations.

I'm on my second bout of labyrinthitis and it's been much MUCH worse than the first. Having said that, other people have clearly suffered more. Does anyone else think that drinking alcohol makes their symptoms worse and have you beena dvised to stop ? What about acupuncture or homeopathy, can anyone recommend anything alternative ?

Would love to be my old self again and ditch this illness. Keep strong everyone !

Janet


Hi again folks!

It's been a long time since I added anything to the site but I've been busy trying to get better :o)

I have been to the hospital about 18 times now. They have given me all sorts of test from blood tests, cat scan, mri scan and more, but even I know the inner ear is far too small to show up on any of them, they will only show if there is something else wrong, I was told by my consultant I might have migraine associated vertigo (this seems to be the latest in thing now!) and she put me on pizotifen, I've been on these for about 15 months now and all they have done is make me put on weight!

With regard to all of you who are feeling fatigued, The reason for this is because in normal circumstances your balance takes care of itself but after a vestibular problem such as labs more of your energy is put into keeping your body balanced hence the fatigue.

Anyway I have made some good progress, even though at first I never though that I would, I too had the panic attacks, taking kalms seemed to help me there, I used to have to hang on to things when I walked anywhere around the house, now I only need to hang on sometimes, like after things that are a little demanding I have even managed to go out, something I hadn't done for almost two years! I feel about 40% better now, some days evan as much as 50%

I found that relaxation tapes helped a fair bit with the stress of all this labs stuff, for me anyway, try to remember, not all things are the same for all people and try to find what works for you, there are no "magic bullets" but, you will make some progress, either slow or otherwise depending on your body and brains ability to compensate.

I feel it also helps to have someone who can motivate you a little, my wife has been my nurse, my goafer, my motivator and most of all my strength, she has been more of a help to me than any doctor could have been simply by being there and encouraging me on that little bit more.

So whatever your stage of labs etc DON'T GIVE UP! it will get better, even if at the moment you think you will never get better just like I used to think that.

I may never be 100% but I am a lot better than I was, and I hope to improve even more, and you will too, keep going, as steady as you like, do what you can when you can and it will gradually start to come together for you, just like it is doing for me.

Good luck to all of you, I wish you all well and keep on trying!!


I haven't posted before, however, I've been reading these posts for about the last 5 weeks. I came down with labs on Feb.7th, 2006. It started with a real fast and furious dizzy spell that was over in about 7-8 seconds. Over the next few days, it happened several times once or twice a day. I went and saw my family doctor who blamed it on my sinus problems. She gave me a decongestant and sent me home. To make a very long story short, within just a few days, the dizziness was constant (although I never had vomiting - thank God). I've been taking the decongestant Entex, and meclizine when the spins get so bad I can't stand it. There was a period of about a week where I was taking meclizine 24 hours a day, but now it seems I'm only having a few really bad days a week. I've had so many of the symptoms that you all describe here - blurred vision, fullness in the ears, fogginess, fatigue, etc.........

I'm very thankful to have found this sight. You all have been much more helpful than any of the doctors I've seen (family doctor, emergency room doctor, ENT.)

My question is, I'm pretty much dizzy all of the time (I don't remember how it feels to NOT be dizzy), but, the actual room-spinning vertigo, just when I think its gone, Wham, it's back, and I'm scared its starting all over again. I'll have 4 or 5 days of no spinning, just all of the other symptoms. Can anyone tell me if this is the way labs goes?

I'm not sure if I have a job anymore - I drive for a living (courier)and obviously thats not an option at this point.


Janet - “Chinese herbal medicine and/or acupuncture may help reduce symptoms; however, there currently is no hard evidence to support this.” Taken from the following link: http://en.wikipedia.org/wiki/Labyrinthitis

I heard of some people who WERE helped by acupuncture. My personal experience did not show any improvement – but everybody is DIFFERENT.

Anna


Does anyone else wake up feeling frightened? I find the mornings really hard to deal with. I don't know if it's the thought of having to get through another day of dizziness but my stomach is churned up and I'm not sleeping very well at all. I wake about 6am every day now and this is becoming a real problem. 6 months into this now and just when I think I've turned a corner something else gets me worried.


Anna, thanks for your response. If I try any remedy and find it helpful I'll leave details on this site of course. I'm taking echinacea to try and boost my immune system, but apart from these efforts, I fear all that remains is to have patience and not to overdo things.

Janet


Sooooo tired of this. How can something last so long???...I feel like I am missing out on so much living......Hope everyone is feeling better!


Frances – you said “Does anyone else wake up feeling frightened? I find the mornings really hard to deal with. I don't know if it's the thought of having to get through another day of dizziness but my stomach is churned up and I'm not sleeping very well at all. I wake about 6am every day now and this is becoming a real problem.” It is amazing how this same thing happens to different people somewhere after several (from 6 to 15+) months of dealing with IT. Exactly like you said – ME TOO was waking up feeling really frightened with grave cold and emptiness in my chest and with a thought – WILL BE I ABLE TO LIVE ANOTHER DAY WITH IT? (this was happening already twice – in 1995 in 2005-6 during recovering from my 3rd and 5th relapses). Strange, that this “morning anxiety” comes at time when things already improved quite a lot, but when you are not feeling completely recovered. So, what I did – at 5 - 6 a.m. when I woke up feeling scared - I took my daily dose of Paxil (SSRI) – 20 mg and tried not to think of anything - just went back to relax with closed eyes in the bed. I was usually able to relax enough and go to sleep. Very often I had “bad dreams” and cried loudly – my husband had to wake me up carefully – “Anna, darling, it’s just a “bad dream….” This “morning anxiety” went away by now (like many other scary symptoms!).

Kim – you said “I'm pretty much dizzy all of the time (I don't remember how it feels to NOT be dizzy), but, the actual room-spinning vertigo, just when I think its gone, Wham, it's back, and I'm scared its starting all over again. I'll have 4 or 5 days of no spinning, just all of the other symptoms. Can anyone tell me if this is the way labs goes?” It is EXACTLY how labs and many of vestibular disorders go. When a true spinning comes back after a period of “no spinning – just other symptoms” – it is not starting all over again! Those spinning attacks become less frequent and shorter as time goes. TIME IS A GREAT NATURAL HEALER for this illness. My personal “real spinning” episodes are definitely less frequent and shorter than they used to be even 6 months ago. Also I know very well the TRIGGERS of those “real spinning” attacks – motor sounds, too much “excitement” while talking with others, too much working on the computer, TV. Recognize your own triggers – try to avoid them – if you can, of course, - It will make your life BEARABLE while you are recovering.

Life is sill going on!!!! Do not give up – never do!

Anna


hello all

today is almost 2 weeks since i started an SSRI and i would say that ive felt better today than i have in 6 months. yea i still felt alittle off and lighthead....kinda like a tension feeling. but i was in good mood all day. last night my band and i even went into a radio station and plugged our new cd and did a radio show with very little problems. maybe...just maybe my problem was anxiety disorder to begin with. not going to say anything to jinx myself. we will see in the next few weeks while it kicks in full. i told my girlfriend that if it never got worse than this than i could live happly like this. hope all is well!!

chris


Anna

Thank you for your words of wisdom and encouragement. I feel as if I'm going backwards all the time. I'm not as good as I was a month ago, judging from the way I feel. I've got an appointment with a physio this afternoon to try and sort out my neck and back. The dizziness is really bad at the moment and I can't focus properly. Of course its a vicious cycle isn't it, dizziness/panic/dizziness/panic. Is it normal to get setbacks as bad as this one?. I know it's normal to have these setbacks but it doesn't make it any easier to deal with. I feel very sick at the moment but don't really want to go back on Stematil. I don't know what started this episode off but the rocking in my head is horrible. I was out in the cold last Saturday and I could hear a loud buzzing in my ear which felt like a short circuit going to my brain - weird. Since then everything seems to be getting worse and worse. I've been home almost 6 months now and can't see an end to this at all. Most other people seem to be making a slow recovery but I feel as if my life is getting more and more difficult. I have a wonderful husband who hasn't worked since all this started and he encourages me every day which helps to keep the depression under control but not the anxiety. I take herbal remedies which don't really work though. I'm seeing a new specialist next week and hope he will have some answers for me. Anna, does your body feel tight and tense? - If not, what is the secret to inner peace. If anyone knows the answer to this please, please, share it with me!!


Hello Again,

Frances, I have woken up very scared some mornings and have found it quite difficult to calm down, when i've had to go to work, I would get extreme anxiety, worrying if i would pass out on stage, i even done shows feeling very dizzy and most times can't finish the job. When it comes to bedtime i found my stomach doing flips and quite a few nights unable to sleep at all lying there the whole night with this scared feeling. Since i've been off work things have calmed down and i have managed to get sleep, But try doing relaxation exercises before bed, i found a site that gives you a list of things that helps you sleep better the address is www.trance.dircon.co.uk/sleep or www.abed.com/sleepcentre/sleep_tips i found some of these tips helpful and try using a burner with some lavender oil or lavender oil on your pillow, it promotes relaxation. Camomile Tea is also a good one.

Hope it helps

Annie


Hello Again,

Frances, I have woken up very scared some mornings and have found it quite difficult to calm down, when i've had to go to work, I would get extreme anxiety, worrying if i would pass out on stage, i even done shows feeling very dizzy and most times can't finish the job. When it comes to bedtime i found my stomach doing flips and quite a few nights unable to sleep at all lying there the whole night with this scared feeling. Since i've been off work things have calmed down and i have managed to get sleep, But try doing relaxation exercises before bed, i found a site that gives you a list of things that helps you sleep better the address is www.trance.dircon.co.uk/sleep or www.abed.com/sleepcentre/sleep_tips i found some of these tips helpful and try using a burner with some lavender oil or lavender oil on your pillow, it promotes relaxation. Camomile Tea is also a good one.

Hope it helps

Annie


Hi Dee, there are numerous really tender points on the body of a person dealing with fibro. There is are also websites that may also give you a clue if this might be worth checking out to you. But mostly there are no specific tests for diagnosing the disease. One may be tested for numerous other illnesses and diseases and have those ruled out before a physician decides to check further. Unfortunately, so many things seem related these days its hard to weed out what is actually going on. Sadly, as of now there is no real treatment for fibro. One just has to eat well, rest as much as possible and generally take care of yourself by not pushing your body past its limits. And if you can receive this, having a good relationship with your creator would be a big plus. Hope you find that it is not fibro. Its not really nice to have.

Lisa


Hi Dee, there are numerous really tender points on the body of a person dealing with fibro. There is are also websites that may also give you a clue if this might be worth checking out to you. But mostly there are no specific tests for diagnosing the disease. One may be tested for numerous other illnesses and diseases and have those ruled out before a physician decides to check further. Unfortunately, so many things seem related these days its hard to weed out what is actually going on. Sadly, as of now there is no real treatment for fibro. One just has to eat well, rest as much as possible and generally take care of yourself by not pushing your body past its limits. And if you can receive this, having a good relationship with your creator would be a big plus. Hope you find that it is not fibro. Its not really nice to have.

Lisa


hey guys -

lauren yeah i feel the same way! I have sooo much living to do!!!

congrats chris on your evening at the radio station -

I have been real dizzy & tired last couple weeks - yawnnnnn

dee


I'm doing ok, a few setbacks here and there.The bastard is just lingering and is getting boring.Hopefully it should gradually dissapear over next few months.I try not to think about it and just get on with my life.No point thinking about it-doesnt make it go away.

Heading for the 8 month mark and keeping the faith of full recovery-I will recover I can feel i.Back to work in 2 weeks , shoulc occupy my mind as im bored shitless at home.Fetid disease.

Deus


Hi all -

Is anyone else having extreme fatigue?

I get up in the morning and its like i could go back to bed. And I feel that way all day long. Everything else is SO MUCH better the past week to 10 days. Hope it continues. It was two months of hell.

But fatique...does that go with it/

tim


Hi, everybody

I have just have read a good information publication from VEDA (Vestibular Disorder Association)under the title "Fatigue, Stress, Responsibility". I would advice to read it to everybody who is dealing with a balance/vestibular disease. $4.00 on VEDA website. Publication S-1

Tim - FATIGUE is a big-big issue for everybody with impaired balance. We have to struggle to keep ourselves upright, to move our bodies "correctly". That is why we are so FATIGUED. So, SLOW DOWN and PACE YOURSELF!!!!!

My situation - still dizzy spells and sensitivity to sounds. Currently, I am awaiting my insurance company and Social Security decisions on my long-term disability claims. As I have expected from the very beginning - it is VERY HARD to prove to these agencies, that I really cannot work. NONE of their reviewing doctors have ever heard of "Vestibular Disorders" and of how terribly disabling these disorders can be! Also -they have NO criteria to evaluate the level of disability for people with vestibular disorders. My Social worker (in SSA) and Benefit Analyst (in the insurance company) are very supportive and nice to me but they keep telling me, that they "reviewers (doctors) did not find enough evidence (!!!!!) to medically support my claim". I was furious by the way - I cried out: Are you telling me, that I am FAKING IT?

My struggle with them is not over! I am OFFENDED enormously! I am really going to stand for my rights!

Yours, Anna 54 years old (34 years with balance disorder - relapses/remittance pattern, hardworking woman and wife, mother of two grown up children, PhD in Materials Science, having twelve Russian and two US patents)


Lisa, i received that loud & clear

Best wishes for your recovery too

dee


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