Sharp Blue: Labyrinthitis comments, page 5

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

1. Comment by Michelle on November 15, 2005 1:49 AM permalink

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. ---

2. Comment by Justine on November 16, 2005 9:45 PM permalink

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!

3. Comment by on November 17, 2005 10:27 AM permalink

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

4. Comment by Hollie on November 17, 2005 4:01 PM permalink

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

5. Comment by Michelle on November 17, 2005 10:05 PM permalink

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.

6. Comment by Michelle on November 19, 2005 12:49 AM permalink

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

7. Comment by Bruno on November 19, 2005 6:17 PM permalink

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

8. Comment by on November 21, 2005 3:38 PM permalink

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

9. Comment by Hollie on November 22, 2005 12:06 AM permalink

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

10. Comment by on November 22, 2005 4:00 PM permalink

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

11. Comment by on November 22, 2005 8:18 PM permalink

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

12. Comment by on November 23, 2005 12:53 PM permalink

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

13. Comment by on November 25, 2005 12:11 PM permalink

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

14. Comment by Lauren on November 27, 2005 6:36 PM permalink

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.

15. Comment by on November 27, 2005 11:15 PM permalink

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

16. Comment by chad on November 28, 2005 3:19 PM permalink

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..........

17. Comment by chad on November 28, 2005 3:21 PM permalink

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......

18. Comment by Lauren on November 28, 2005 6:33 PM permalink

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.

19. Comment by Anna on November 28, 2005 7:49 PM permalink

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

20. Comment by Patti-Jo on November 28, 2005 8:57 PM permalink

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!

21. Comment by Anna on November 28, 2005 10:23 PM permalink

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

22. Comment by on November 29, 2005 12:13 PM permalink

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

23. Comment by chad on November 29, 2005 3:56 PM permalink

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

24. Comment by chad on November 29, 2005 7:07 PM permalink

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....

25. Comment by on November 29, 2005 8:45 PM permalink

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

26. Comment by Lauren on November 29, 2005 10:16 PM permalink

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.

27. Comment by chad on November 30, 2005 3:06 PM permalink

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....

28. Comment by Corey on November 30, 2005 6:15 PM permalink

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.

29. Comment by Patti-Jo on December 1, 2005 1:46 PM permalink

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.

30. Comment by chad on December 1, 2005 3:12 PM permalink

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

31. Comment by Anna on December 1, 2005 5:17 PM permalink

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

32. Comment by lauren on December 1, 2005 6:40 PM permalink

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.

33. Comment by Patti-Jo on December 1, 2005 10:51 PM permalink

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!

34. Comment by Michelle on December 2, 2005 2:21 PM permalink

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.

35. Comment by Lauren on December 2, 2005 7:25 PM permalink

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.

36. Comment by on December 4, 2005 5:44 PM permalink

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

37. Comment by Anna on December 5, 2005 1:41 AM permalink

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

38. Comment by casey on December 5, 2005 11:38 AM permalink

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

39. Comment by on December 5, 2005 12:48 PM permalink

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

40. Comment by chad on December 5, 2005 3:15 PM permalink

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...

41. Comment by chad on December 5, 2005 6:41 PM permalink

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

42. Comment by lauren on December 5, 2005 8:26 PM permalink

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.....?

43. Comment by on December 6, 2005 12:13 PM permalink

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

44. Comment by casey on December 6, 2005 4:29 PM permalink

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

45. Comment by lauren on December 6, 2005 7:36 PM permalink

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!

46. Comment by Michelle on December 6, 2005 8:10 PM permalink

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

47. Comment by chad on December 6, 2005 8:53 PM permalink

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....

48. Comment by Anna on December 6, 2005 10:05 PM permalink

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

49. Comment by on December 7, 2005 6:26 PM permalink

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

50. Comment by on December 7, 2005 8:38 PM permalink

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

51. Comment by Anna on December 8, 2005 7:01 PM permalink

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

52. Comment by chad on December 8, 2005 7:20 PM permalink

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.....

53. Comment by Tom on December 10, 2005 8:02 AM permalink

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

54. Comment by lauren on December 11, 2005 9:59 PM permalink

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!!!

55. Comment by on December 11, 2005 11:31 PM permalink

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

56. Comment by Anna on December 12, 2005 12:44 AM permalink

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

57. Comment by on December 12, 2005 4:34 PM permalink

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

58. Comment by Lauren on December 12, 2005 6:31 PM permalink

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.

59. Comment by chad on December 12, 2005 7:11 PM permalink

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

60. Comment by on December 12, 2005 9:28 PM permalink

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

Very depressing thought

Deus

61. Comment by on December 13, 2005 3:30 PM permalink

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

62. Comment by dave on December 13, 2005 5:04 PM permalink

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

63. Comment by chad on December 13, 2005 8:46 PM permalink

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............

64. Comment by dave on December 14, 2005 1:36 AM permalink

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

65. Comment by Anna on December 14, 2005 6:08 PM permalink

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

66. Comment by on December 14, 2005 7:50 PM permalink

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

67. Comment by chad on December 14, 2005 9:13 PM permalink

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!!!!!!!!!!!!!!!

68. Comment by Sandie on December 16, 2005 12:30 PM permalink

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

69. Comment by chad on December 16, 2005 5:12 PM permalink

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...

70. Comment by Lauren on December 16, 2005 8:14 PM permalink

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.

71. Comment by on December 16, 2005 10:31 PM permalink

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

72. Comment by Lauren on December 16, 2005 11:22 PM permalink

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.

73. Comment by on December 17, 2005 11:10 AM permalink

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

74. Comment by chad on December 17, 2005 11:08 PM permalink

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....

75. Comment by on December 19, 2005 5:44 PM permalink

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

76. Comment by Beatle Mark on December 19, 2005 6:24 PM permalink

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!

77. Comment by Anna on December 20, 2005 1:12 AM permalink

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

78. Comment by angel on December 20, 2005 8:15 PM permalink

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.

79. Comment by Lauren on December 21, 2005 9:51 PM permalink

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.

80. Comment by chad on December 22, 2005 2:44 PM permalink

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

81. Comment by on December 22, 2005 6:52 PM permalink

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

82. Comment by Sandie on December 23, 2005 1:54 PM permalink

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

83. Comment by on December 24, 2005 4:43 PM permalink

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

84. Comment by deee on December 27, 2005 7:31 PM permalink

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

85. Comment by Lauren on December 27, 2005 10:10 PM permalink

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.

86. Comment by chad on December 28, 2005 3:20 PM permalink

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

87. Comment by on December 29, 2005 10:56 AM permalink

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

88. Comment by on December 29, 2005 12:55 PM permalink

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

Deus

89. Comment by Lauren on December 29, 2005 6:03 PM permalink

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.

90. Comment by Mac on December 30, 2005 12:42 AM permalink

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?

91. Comment by on December 31, 2005 5:13 PM permalink

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

92. Comment by Anna on January 1, 2006 4:45 AM permalink

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

93. Comment by Rich on January 1, 2006 10:17 AM permalink

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

94. Comment by chad on January 1, 2006 3:31 PM permalink

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

95. Comment by Lauren on January 2, 2006 6:55 PM permalink

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.

96. Comment by on January 3, 2006 4:33 PM permalink

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.

97. Comment by chad on January 3, 2006 7:24 PM permalink

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....

98. Comment by chad on January 3, 2006 8:17 PM permalink

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!!!!!!!!!!!!!!!!!!!!!!!

99. Comment by Anna on January 3, 2006 8:28 PM permalink

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

100. Comment by on January 3, 2006 10:31 PM permalink

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

101. Comment by Kate Ash on January 4, 2006 12:54 AM permalink

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

102. Comment by george on January 5, 2006 12:36 AM permalink

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)

103. Comment by Anna on January 5, 2006 1:51 AM permalink

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

104. Comment by on January 8, 2006 1:41 PM permalink

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

105. Comment by chad on January 9, 2006 3:34 PM permalink

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....

106. Comment by chad on January 9, 2006 5:02 PM permalink

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

107. Comment by chad on January 9, 2006 6:38 PM permalink

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

108. Comment by chad on January 9, 2006 7:11 PM permalink

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/?????

109. Comment by Anna on January 9, 2006 8:29 PM permalink

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

110. Comment by chad on January 9, 2006 8:37 PM permalink

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.....

111. Comment by Tom on January 10, 2006 5:04 PM permalink

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

112. Comment by Anna on January 10, 2006 6:11 PM permalink

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

113. Comment by chad on January 10, 2006 9:19 PM permalink

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...

114. Comment by lauren on January 10, 2006 10:53 PM permalink

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.

115. Comment by Anna on January 11, 2006 5:59 PM permalink

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.

116. Comment by Robin on January 12, 2006 3:08 PM permalink

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, di