Sharp Blue: Labyrinthitis comments, page 5

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??