Hello All

My Story:

Sitting at work on August 4th 2005 and suddenly felt queasy and nauseous and spaced out/lightheaded and weird.Suffered 24/7 for a whole month and then woke up and it was gone.I jumped for joy!! No symptoms at all!! However to my dismay it came back 2 weeks later badly and I have had it 24/7 ever since.Worked through to December then couldn't hack feeling ill everyday and became depressed and hated my existence.I am only 23, very outgoing and always up for a good laugh.Oh how my life had changed.I had typical avoidance behaviour and just wanted to finish work and hit the couch.

December 19th 2005: After second ENT appointment (1st one was just brushed away saying it would be gone in 6 months) was diagnosed with weakness in the right ear.ENG was awful!! So began the regime to rid myself of dizziness.I have Acupuncture once a week, cranial osteopathy, cycle everyday (alternative VRT-apparently it is the best thing for a balance disorder) and also have had CBT.

January 2006: Some marked improvement for a period of 2 weeks with more good days-luckily i was feeling good on my bday.However just had a return of some bad days.This has naturally discouraged me quite a bit as I thought i was nearly getting there.

Some questions for all you veterans:

Do you know why my symptoms dissapeared for 2 weeks and then came rushing back?

I know I will beat this bout, everyone seems to at some point, but will this thing always be with me, by that i mean will i always decompensate and have to deal with this time and time again.

I have never had spinning vertigo and can perform all tasks like driving etc.Does this bode well for a full recovery.

I hope to beat this in a year.Is that a realistic approach in light of my 'beat
labrynthitis regime'?

Also could I have Periphymph Fistula or Eustachian Tube dsyfuction?How do you know if you have these?

Sorry for so many questions.Im sure you all hear these everyday.Its just after six months I needed to ask some advice as this is really starting to drive me crazy and is affecting my career and social life.I would pay or do anything to have my old self back!

Never give up the hope :)

I feel your pain Dizzy. I was diagnosed with Labyrenthitis in October of '05. The only positive thing I can report is that the nausea was relieved by sinus medication and a boat load of antibiotics.

I had told everyone that my sinuses were stopping up and making my ears ring and caused some dizziness which, at the time, was a novelty. In mid-October I had developed violent nausea and motion sickness for the next several days. Driving home from work became a dreaded task.

I’m glad the “worst” of it is over but this dizziness is getting old. My ENT wants to set me up with therapy but I’m not convinced that it will do any better than the exercises I’ve been doing on my own.

Hopefully we can find some relief soon. ;)

Eug

Hi DizzyRascal
Sounds like you are doing everything right. Keep the cycling up, it is great VRT and good to get some endorphines running through your veins.
the bad days you are going through are probably what we call a "decompensation event". This occurs on and off. In the beginning you may have equal good to bad days, but you will notice these events occur less often and will last for a shorter period. Recently Scotsman posted about some video clips from Harvard Med school and there is one on Vestibular Compensation which explains it all very clearly. Even after dealing with these events for a couple of years, the video made me feel better as it does explain that most people eventually get back to 100% and stay there.
I like your attitude and approach...in the video the Dr explains that people who are active and want to get better will see improvement faster than those who don't.
Lots of info on this board too.
FC

Dizzyrascal:
Always determined to get well and beat this thing is the best attitude to have. Many of us started the way you did. Had it for a while, got a little better, better and then wham it hits you hard. No rhyme or reason with this. Everybodys symptoms are different. I think it is a very good sign that you have marked progress and are seeing improvement. The set backs are all part of this. Two steps forward....five back...one forward.....two back.
Firechick is right by saying keep up the vrt. It is so important to keep yourself moving. Very knowledgable people on this board. Fantastic place for support. The best place for the right answers.....more so than most Dr.s.
I always tried to keep the best attitude and always said I would recover. I am and remain at approx. 95 - 100% most of the time.

all the best,
Kathy :D

Hi Dizzyrascal,

Just to echo what the others have said above - you're attitude to this sounds great and you are already doing everything that is possible. Your trajectory out of this thing sounds similar to mine actually although I never had the 2 week period of nothing happening. I never had spinning vertigo either.

Check out the video (in the archive - first post) called "Vestibular Compensation" as FC mentioned. I think it will lay your fears to rest. Be aware that decompensation can be quite strong and, yes, can knock the stuffing out of you just when you thought it was all over. But you are doing well - very well at 6 months. Don't let the downers discourage you as they become less frequent over time (and completely stop for most) and less severe.

Best....Scott :cool:

Hi All

Thanks for your encouraging words.I am confident I will beat this, but dread all the decompensation events I will have to deal with, but as you all say it will dissapear eventually.

My various treatments combined with cycling do seem to be having a positive effect and I would advise anyone who is in the early months to be proactive and work what makes you feel better.

Kathy how long did it take you to get to your 95-100% mark?

I understand that most people feel better by a year, so that is what I shall aim for.

I have much sympathy for all your veterans who have dealt with this for years on end-No one but people who have experienced this 'labrynthitis ride' cant possibly understand.

All I can say is nothing can last forever.

I shall keep you updated on my progress and will no doubt ask upon your wealth of knowledge from time to time.

Monsieur DizzyRascal

Hello All

My Story:

Sitting at work on August 4th 2005 and suddenly felt queasy and nauseous and spaced out/lightheaded and weird.Suffered 24/7 for a whole month and then woke up and it was gone.I jumped for joy!! No symptoms at all!! However to my dismay it came back 2 weeks later badly and I have had it 24/7 ever since.Worked through to December then couldn't hack feeling ill everyday and became depressed and hated my existence.I am only 23, very outgoing and always up for a good laugh.Oh how my life had changed.I had typical avoidance behaviour and just wanted to finish work and hit the couch.

December 19th 2005: After second ENT appointment (1st one was just brushed away saying it would be gone in 6 months) was diagnosed with weakness in the right ear.ENG was awful!! So began the regime to rid myself of dizziness.I have Acupuncture once a week, cranial osteopathy, cycle everyday (alternative VRT-apparently it is the best thing for a balance disorder) and also have had CBT.

January 2006: Some marked improvement for a period of 2 weeks with more good days-luckily i was feeling good on my bday.However just had a return of some bad days.This has naturally discouraged me quite a bit as I thought i was nearly getting there.

Some questions for all you veterans:

Do you know why my symptoms dissapeared for 2 weeks and then came rushing back?

I know I will beat this bout, everyone seems to at some point, but will this thing always be with me, by that i mean will i always decompensate and have to deal with this time and time again.

I have never had spinning vertigo and can perform all tasks like driving etc.Does this bode well for a full recovery.

I hope to beat this in a year.Is that a realistic approach in light of my 'beat
labrynthitis regime'?

Also could I have Periphymph Fistula or Eustachian Tube dsyfuction?How do you know if you have these?

Sorry for so many questions.Im sure you all hear these everyday.Its just after six months I needed to ask some advice as this is really starting to drive me crazy and is affecting my career and social life.I would pay or do anything to have my old self back!

Never give up the hope :)

What is an ENG and what made it awful?

Also.....with this disease do i have to be nauseaus to have it? All i have is lightheaded feeling...have had it since Oct. 05...started with sinus infection and doc did see some fluid in my ears......ONLY symptom is my lightheaded/dizzy feeling (not like the room is spinning although ti was the first time i had an inkling i was sick...happened out in a bank!)...have had anxiety since then! still dealing....no meds...any meds?

Manchak,

Do you have any other symptoms at all? Dizziness is usually a main symptom, but many others have added symptoms -- although it is not a requirement.

Tinnitus, Pressure in Ear, Headaches, Pressure IN HEad, Visual Issues, Fatigue?? Any of these....

The first time I had this, It was only dizziness, maybe a headache or two, but mostly dizzies.

Wanted to also say that I am only lightheaded as well, no true vertigo...

Tummy

no...not really...just lightheadedness......and sometimes pressure in my head but not on any regular basis......

do you have an official dx?

how long has this been affecting you? are you on anything?

dizzyrascal,
your problem sounds similar to mine. Not to scare you, but mine's been dragging on for 40 months. Actually I had about 14 months of almost total normalcy which ending abruptly 6 weeks ago. I was recovering from a cold, and became slightly nauseated 24/7 for about 3 weeks. Around the time that ended, I became dizzy/lightheaded/disconnected/just off which is now going on about 4 weeks, 24/7. I'm also getting fast heartbeat/hypertension, probably from anxiety about the dizziness, which contributes more to the dizziness. What a vicious circle. I'm not 100% convinced it's vestibular-related, I still toy with the idea that maybe it's all anxiety related, then the symptoms from the anxiety just build.. I never did have a knock-down case of VN or labs where I was bedridden for weeks, I just seem to have the after-effects and relapses. Best of luck to you and everyone else!