Ongoing labyrinthitis/vestibular neuronitis - Inner Ear Disorders Message Board

Jen30 · 01-17-2003, 10:41 PM

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.

Mica09 · 01-18-2003, 09:08 AM

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.

Jen30 · 01-19-2003, 12:20 AM

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?

Mica09 · 01-19-2003, 05:59 PM

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.

Jen30 · 01-20-2003, 05:06 AM

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.