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Author Topic: labyrinthitis?  (Read 10283 times)

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Offline HIVworker

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labyrinthitis?
« on: August 04, 2006, 11:37:03 am »
I am suffering from severe Vertigo right now, which my doctor said was labyrinthitis. Anyone else suffered from this? It feels like I am drunk without the fun. It makes working in the HIV lab impossible and I'm not even going to try.

If anyone has had this, how long does it last? I'm taking Antivert for it, but it only makes me sleepy.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline MSPspud

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Re: labyrinthitis?
« Reply #1 on: August 04, 2006, 11:49:08 am »
I've had this before and it TOTALLY sucks.  The first time it happend I wasn't sure what the heck was going on.  It was so bad I couldn't even see myself in the mirror as my vision kept moving from right to left, right to left....  driving - out of the question.

I also agree that the Antivert is useless.

What did seem to alleviate things however was to get my blood flowing.  Something about working out would change pressure and give reprieve for awhile.  Try going for a brisk walk or run.

Offline ACinKC

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Re: labyrinthitis?
« Reply #2 on: August 04, 2006, 11:58:06 am »
I had this when I was a kid!  But I HATE David Bowie so it was no suprise!

LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline HIVworker

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Re: labyrinthitis?
« Reply #3 on: August 04, 2006, 02:01:17 pm »
No, this induces a different sort of nausea altogether...
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline JeffInNYC

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Re: labyrinthitis?
« Reply #4 on: August 04, 2006, 06:47:46 pm »
Hi R,

Sorry youre going through this.  This is a topic I know a heck of a lot about.

I started getting episodic vertigo 5 years ago lasting from 20 seconds to 20 minutes.  They were self-contained and afterwards I was fine.

Then several months ago I was feeling funny outside - a moment here a moment there.  I didnt understand what was going on - for awhile I thought I was going crazy.  Then one day it got so bad outside I realized it was my balance.  There was no spinning this time, but EVERYtime I was OUTside, I felt like I would fall down...crossing the street was a bitch...it was like crossing a street of 20 to 30 feet looked like a mile to me.  They said it was sensory overload and my brain needed time to compensate for the mixed messages it was getting from my inner ears...more specifically, the vestibular nerves.

They dont know exactly what the problem is but I probably had a virus at some point that damaged one of the vestibular nerves.  We balance ourselves because each nerve gives equal but opposite signals to the brain as to our position in the environment - if they are not equal and opposite, then the brain perceives motion which causes the dizziness.  It took 4 to 5 months but now I can get around outside even though I know something isnt quite right.  This is a bitch especially when you live and work in NYC!

They prescribed me antivert which didnt do shit except make me tired.  When you have trouble balancing yourself the last thing you need is to be drowsy.

I went for vestibular rehabilitation therapy and was taught exercises and little tricks to help my brain compensate for the disorder...not sure if it helped but they believe it speeds up the process.

Labyrinthitis...I am guessing your vertigo is lasting a minute or less each episode? Or is it constant?  When I had the vertigo I couldnt read or look at my computer...it is truly debilitating.  Are you experiencing ringing in the ears (tinnitus) or any hearing loss at all?  Is the spinning occuring all the time or when you turn over in bed or make sudden movements with your head and body?

Please see an ENT (ear nose throat doctor) and let them do a hearing exam and ENG and an MRI of the auditory canal wouldnt be a bad idea.  Im confident this will clear for you shortly but I know its horrible while youre going through it.  The thing is, they will know its your inner ear but theyll probably say its of idiopathic origin...basically they have no clue why it happened.

If you have any questions feel free to PM me and you can gladly PM or email me any questions you may have.

I hope youre feeling better soon!  Please keep us posted.

Offline HIVworker

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Re: labyrinthitis?
« Reply #5 on: August 04, 2006, 10:18:38 pm »
Jeff,

Ive done almost all of that stuff on the list already. It's a viral infection of some sort and it is certainly giving me all of these symptoms.

It's not nerve damage yet. I don't have a tumor or bleeding in the brain. It's Labyrinthitis alright - I also know the difference between vertigo and dizzyness and trust me it's vertigo.

I just wanted to hear other people's experience, I'm getting good medical help, but I know it can take a long time to clear up and leave lasting damage. So thanks for your story it was useful.

R
« Last Edit: August 04, 2006, 10:29:47 pm by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline JeffInNYC

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Re: labyrinthitis?
« Reply #6 on: August 04, 2006, 10:24:36 pm »
Was your ENG totally normal?  No abnormal nystagmus noted?

My vertigo...the true spinning was episodic like a couple of times a week and rarely a couple of times a day....self contained like I said on and off for 4 years...then no spinning for a year so I though wow its finally gone....then the whole imbalance thing started...my symptoms morphed.

With spinning I couldnt see or read or work during those few moments....the imbalance I cant walk outside...dont know which is worse.  Luckily its improved.

Id like to hear from others as well.

Hope youre feeling better - I know it sucks.

Offline HIVworker

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Re: labyrinthitis?
« Reply #7 on: August 04, 2006, 10:31:18 pm »
PS. I got roaring in the ears...and I modified my post to make it less rude. This thing really shortened my fuse...apologies for that.

...and thank you for your support. I just feel useless right now.
« Last Edit: August 04, 2006, 10:36:08 pm by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline JeffInNYC

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Re: labyrinthitis?
« Reply #8 on: August 04, 2006, 10:38:14 pm »
Dont worry about it.  I didnt mean to make it sound like I was talking down to you or anything. I just know youre a scientist and would understand everything I was writing even if it wasnt your specialty.  Its just that I totally understand how you must be feeling.  I have gone through hell with this thing - more than people realize.  Then I have to listen to people ask me if its psychosomatic or if its in my mind...but thats another issue.

Just follow the doctors instructions and Im sure youll be alright...its fairly common and my guesstimate is that 2 to 3 weeks youll be back to normal.

PS Talk about the roaring in the ears...well sometimes at night when its quiet I cant sleep because I hear noises in my HEAD...not my ears but in my head...the best way to describe it is to say it sounds like glass breaking in slow motion.  Its messed up.

Little Steve has Menieres but thats a totally different animal.

Try to relax - I know its tough - but this will resolve for you.

Please keep us updated.

Take care.

Offline HIVworker

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Re: labyrinthitis?
« Reply #9 on: August 04, 2006, 10:43:56 pm »
Neuroscience was my PhD. Not that this means anything for this condition. As a virologist for the past few years it frustrates me to hear a doctor say, "It's probably viral" because I want to know which. I know science doesn't have an answer and I know it is trite to complain on a HIV forum about it. But it has really screwed with my work and I have to ask people to do my experiments for me because if I reach up I have a chance of falling down - not what you want to do with flasks of HIV in your hands. It has put me in a right pissy mood for sure. And Antivert makes me sleepy too. I struggle to keep my eyes open at work.

I guess I should suck it up for the next few days and get some rest as the doctor and you said. Bloody ears. Who needs them!

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline JeffInNYC

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Re: labyrinthitis?
« Reply #10 on: August 04, 2006, 10:48:37 pm »
But it probably is viral. LOL  So try to relax and get some rest.  Im sure youre going to be fine.

And only those who have experienced this know exactly how u feel and I can assure you that it isnt trite.

I was terrified my problem wasnt going to go away but the docs assured me that everyone is different and it would eventually clear up and it has.

Your case is different and itll be a shorter time span.  Its frustrating I know, but you just have to wait it out.

Take care.

Offline lydgate

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Re: labyrinthitis?
« Reply #11 on: August 04, 2006, 11:04:53 pm »
My mother had this, pretty badly, about 18 years ago. It was an acute self-limiting episode. Yep, "something" viral. I've come to loathe the word "idiopathic" since that time. R, I think you're just going to have to sleep this one out.

I'm going to make one feeble suggestion which may only aggravate you: if you're like me at all, the not-being-able-to-do-anything is making you bored, cranky, miserable. When I get one of my blinding headaches (not very frequent, thank goodness) I'm as unhappy at the fact that I can't read or write or watch telly as I am in physical pain. So I just listen to lots of music (Bach cello suites recommended for any kind of head pain). Are you a books-on-tape kind of guy?

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline HIVworker

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Re: labyrinthitis?
« Reply #12 on: August 04, 2006, 11:45:23 pm »
Thanks Jay. I think it is a herpes virus, but there is little research in it. I am very much a cello sort of guy (used to play) but I prefer Elgar.

Thanks for your comments. I'll ride the storm and stay in bed. I've been feeling like I am on the bow of a ship all week - and it isn't the Titantic and I feel far from the "King of the world"

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline jkinatl2

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Re: labyrinthitis?
« Reply #13 on: August 04, 2006, 11:52:52 pm »
Ack, I have never experienced that condition, though it sounds awful... especially for a researcher who does lab work! I hope you are back on your feet soon.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline lydgate

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Re: labyrinthitis?
« Reply #14 on: August 05, 2006, 12:09:02 am »
What is it with you Brits and Elgar?  ;) I was somewhat shocked to hear Matt (newt) claim that Elgar's Second Symphony is the most under-rated piece of twentieth-century music. I've always ranked Elgar alongside Rimsky-Korsakoff and the like; Edwardian schlock. (Now Britten -- there's an under-heard British composer.) I think too much "Land of Hope and Glory" has clouded British judgement. Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline HIVworker

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Re: labyrinthitis?
« Reply #15 on: August 05, 2006, 12:16:09 am »
I like him because he grew up where I did  ;). He's very British. I guess it takes all types and I like Elgar.

R

PS. I agree about Benny Britten.
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline jkinatl2

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Re: labyrinthitis?
« Reply #16 on: August 05, 2006, 12:19:24 am »
Someone please send me links to samples of the music in question. Me likee the good compose.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline HIVworker

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Re: labyrinthitis?
« Reply #17 on: August 05, 2006, 12:22:57 am »
For a sampler go to the second tune on the Amazon website

http://www.amazon.com/gp/product/B0002VEQGG/sr=8-4/qid=1154751653/ref=pd_bbs_4/102-5127509-8177709?ie=UTF8

 I. Adagio - Moderato - Jacqueline Du Pre
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline jkinatl2

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Re: labyrinthitis?
« Reply #18 on: August 05, 2006, 12:26:46 am »
aw man, nice. Like to explore new stuff like that. Thanks, Dizzyman.

:D

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline HIVworker

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Re: labyrinthitis?
« Reply #19 on: August 05, 2006, 12:30:52 am »
That's what they were calling me at work too :( ;)
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline lydgate

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Re: labyrinthitis?
« Reply #20 on: August 05, 2006, 12:39:42 am »
Pomp and Circumstance, March 1; England's "reserve" national anthem, played at graduation ceremonies too.

http://www.youtube.com/watch?v=r_29H-uiWOs

Benjamin Britten's opus 23 for two pianos. He was a good fag. The most overtly homoerotic thing he did, I suppose, is the opera Billy Budd, with a libretto by E.M. Forster.

http://www.youtube.com/watch?v=nqb7vAYk4w8


Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline lydgate

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Re: labyrinthitis?
« Reply #21 on: August 05, 2006, 12:43:13 am »
You grew up near the Malvern Hills, lucky you. J.
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

 


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