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Old 01-17-2003, 09:41 PM   #1
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Talking Ongoing labyrinthitis/vestibular neuronitis

Hi
Yesterday I visited a physiotherpist who specialises in rehabilititation for balance disorders. She has a PHD in the field and is currently undergoing research in the area.

My story is that I woke up one day, 4 months ago, feeling dizzy. I had not been sick, and have never had ear problems before. To cut a long story short, I was diagnosed with labyrinthitis and told that it would last 6 weeks and go away on it's own. Well it's 4 months later and I'm still suffering!

My dizziness peaks and falls, but is never gone. For 3 days I can feel utterly disorientated, dizzy, and exhausted. I will then wake up feeling like a new person (well, relatively speaking!). This unfortunately only lasts a day or two and then I fall back to a constant 24/7 dizziness.

The first thing the physio did was establish which balance disorder I had. She did this by getting me to do a variety of tests in her office e.g standing on a piece of foam with my eyes open, then closed; marching on the spot with my eyes open, then closed; lying me in certain positions and examining my eyes for nystagmus (shaking) etc. She established that I have 'vestibular neuronitis' as a result of viral labyrinthits. This means that the viral labyrinthitis (which I had back in Oct 2002) affected the nerve in my inner ear and the nerve has not recovered. It is therefore damaged and causing ongoing dizziness. It is important to establish what condition you have. Treatment is different for the different kinds of balance disorders e.g. BPPV, meneires disease, vestibular neuronitis.

I have been given a series of very simple exercises to do that will teach my brain to adapt to the damage that has been done to the nerve. The good news is that the brain IS able to adapt to the damage and that if I persevere with the exercises I will see improvement...it will, however, be gradual. This I suppose is the bad news, but I feel so positive that I have been given a course to follow rather than the endless advice from the GP to "wait it out". She also advised me, like others have been advised, to stop taking medication and to resume exercise. This in itself lifted my spirits as I am an active person and had stopped exercising because I thought I might make the condition worse. I've decided to exercise as much as I can on the good days, and wait out the bad days.

Keep searching for a doctor or physio that knows what he/she is talking about. For anyone who lives in Australia, give Professor Margie Sharpe a call on +61 8 8291 8577. She is only too happy to phone you back.

In my opinion, the first step in beating this disorder is to accept that you have it. I went through weeks of saying things like "I can't live like this; it must go away; I'm not prepared to live with this". Accept that you have it, find a knowledgeable doctor, and work on the problem.

Good luck, fellow dizzy sufferers.

 
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Old 01-18-2003, 08:08 AM   #2
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Thank you very much for your words of encouragment. I know exaclty how you feel. For myself, I see no end to it. I've been feeling dizzy 24/7 (no virtigo), sometimes unsteadiness for the past 15 months. Like you said some days I don't want to accept my condition and don't want to fight it. The days where I try to ignore it and be more active are better.

 
Old 01-18-2003, 11:20 PM   #3
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MPaiement

Do your symptoms go up and down all the time? I find that I mostly feel I am able to continue my life as normal even though I am dizzy 24/7 but 3 times in the last 4 months I have had to take off work for 3 - 4 days at a time because the dizziness gets unbearable. Have you had this pattern? i.e. with peaks that keep on coming?


 
Old 01-19-2003, 04:59 PM   #4
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Jen,

Yes, I do have ups and downs. Not to the point where I can't function but I feel very uncomfortable. At my worse I feel dizzier(no spinning - my dizziness is hard to explain, things are moving but I can't tell you how, maybe a wax and wane or borderline vertigo at my worse) unsteadiness, a numbing feeling in my head when I move it (it's like I can feel my brain) and feel dizzier or unsteady when I'm in a mall, crowd or a room with lots of objects, even when looking in the closet or pantry. I feel at my best in a moving car. I find that wearing sunglasses or even wearing my reading glasses on the tip of my nose when I walk around helps. I don't notice the dizziness as much.

I was so uncomfortable walking around that I didn't go back to work. I had a high responsibility job and having three kids I didn't find that I had the energy to function properly. After about 11 months of feeling sick, we decided to move closer to our families. I try to keep as active as possible but I would like to do a lot more.

Overall, I don't know if I am any better, but I can say that I'm more used to it. I'm going to try going back to work eventually, better or not.

 
Old 01-20-2003, 04:06 AM   #5
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Thanks for your reply. I have been able to continue working throughout (although with some days virtually pretending to work!) so feel fortunate in that sense. Having no kids is probably less of a stress too! Hang in there. Sounds like you've been really strong throughout this.

 
Old 01-20-2003, 01:42 PM   #6
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I agree with Jen in that you have been really strong MPaiment. When you describe your symptoms, they are EXACTLY like me. Have they investigated the possibility of Eustacian Tube Dysfunction? Do they say 15mths is normal for Labrynthitis?

 
Old 01-21-2003, 06:47 AM   #7
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How would you diagnose Eustacian Tube Dysfunction? I had and ENG, Audiogram, CTScan, MRI? All negative. Would any of these tests show it?

I don't know if it's normal to have Labyrinthitis for over 15 months. That was the opinion of the last neurologist that I saw - I've seen many doctors, including a few ENT that couldn't come up with an answer. I never had the classical symptoms of Labyrinthitis - meaning that it didn't start suddenly with attacks of vertigo. Mine started with a feeling of unsteadiness and after about a week, the dizziness started (no virtigo). This neurologist told me that sometimes when a virus comes back (I had Labyrinthitis 11 years ago that lasted about 10 days) the symptoms are not as severe (might be the reason why nobody diagnosed it as being L), that it could last a long time (never specified how long) but that it would eventually go away. I just hope that he's right!!!

What were your first symptoms? Were you diagnosed with ETD?

[This message has been edited by MPaiement (edited 01-21-2003).]

 
Old 01-21-2003, 08:56 AM   #8
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..."I don't know if it's normal to have Labyrinthitis for over 15 months"........

It is hard to say what is normal in this area--since the Medical types do not know in almost half of the cases what causes it---however that seems unusually long---and yes there is evidence that a reoccurance is milder---however--once again--that is a long time.

Also--placing your glasses on the tip of your nose--is interesting---plus the other visual items you outlined---there is a modest amount of medical research---that points towards--eye invoked problems--in the vestibular area.

Hope you have had your eyes checked by an eye doc(not your normal run of the mill type eye doc--can't remember their name)--to determine that is not causing the problem.

15 months is a long time!!

 
Old 01-21-2003, 09:44 AM   #9
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To be honest, I am not sure how to diagnose ETD...DOES ANYONE KNOW??? I presume it would show up on the ear pressure test the ENT does?

Mine started JUST like yours, not sudden, gradual. But L'itis can apparently be like this. Has yours got worse with colds?

 
Old 01-22-2003, 12:04 AM   #10
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Yup, mine also started gradually. Two weeks of feeling dizzy on and off and then suddenly constant. That was over 4 months ago...

 
Old 01-22-2003, 12:38 AM   #11
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COuld you please tell me what this is?
does it affect your ears
i have had an inknown virus now for months with all your symptoms plus ringing blocked ears that make you feel like you are swallowing over an oyster or something
my ears constantly buzz and i have found that i have this strange head feeling like im all out there not in my head properly
i have found this is much worse on windy or cloudy days
thank you
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Old 01-22-2003, 08:49 AM   #12
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I'm so glad that I've finally met people who seem to have the same symptoms has me.

Emsybobs, how long have you been sick. Were you diagnosed with something in particular? Since I've been sick I haven't caught a cold, so I don't know, and I don't want to find out!!! I just started trying a natural product that is suppose to help get rid of viruses. It's to early to tell yet if it's working. I need to take it at least a month before I can see if it's helping.

All of you - Were you sick with a cold or something before you got dizzy. I was in perfect health before.

Angel - Know how you feel. We have so many symptoms. Sometimes, when you try to describe them to others, they look at you as if your crazy. It seems that every day we have a different symptom. But what you describe can be due to a virus (Labyrinthis, or vestibular neuronitis) but dizziness can be caused by so many things.

I discovered through my illness that the doctors don't seem to know much about inner ear problems.

Oh, about the reading glasses at the tip of my nose. It doesn't correct my dizziness,it's just that the fact that I keep in and out of focus, distracts me. I can blame the dizziness on my glasses, not me. Ha! ha! It's weird, but hey, whatever works!


[This message has been edited by MPaiement (edited 01-22-2003).]

 
Old 01-22-2003, 11:35 AM   #13
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Hi, in answer to your question, yes I had a bad cold about 3 weeks prior to feeling dizzy. I began feeling dizzy in mid-october. I have seen an ENT and he has diagnosed L'itis. He did a pressure and hearing test - all normal. I was making progress until I got this cold so I think I have been unfortunate in that it has set me back.

I am a bit worried about whether it all could be Eustacian Tube Dysfunction - but presume it would have showed up on the pressure test?

 
Old 01-22-2003, 11:45 AM   #14
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Angel...yours sounds like Eustacian Tube Dysfunction to me...the bit about windy days etc. It's all to do with pressure in your ears etc. If you havent already, see an ENT specialist.

xxx

 
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