Stephanie's Story

My story started 23 years ago when I was 10. Or maybe it began earlier...It might have began when I fell off a bunk bed, and split my head open. Or, the day I scratched an itchy ear, and over the next few hours had such horrible pain- I was rushed to the Mass Eye and Ear, where they said I almost blew out an inner ear drum. Maybe one of these things began the cycle of dizziness- no doctors seem to know! The first vertigo attack occurred while I was siting in class. The room just began to spin uncontrollably. I was scared to death, but it ended as quickly as it began- and I ignored it. Over the next few years, the attacks of dizziness came a couple of times a year. The worst thing about it- esp for a young child-was the fear. My parents would rush me to the ER, where I was fluffed off as having the flu. But, the cycle of vertigo attacks kept coming. At 15, I was hospitalized for testing- all the standard ENG's. The results were unclear. Probably
some inner ear damage, but which ear was unclear. At 18, I saw a new Neurologist, who diagnosed me with Meniere's. He told me an operation was not an option, given a specific ear cannot be determined, and the hearing would be destroyed. I "Go ahead- I'd rather be deaf than dizzy!" He wouldn't do it, and put me on Meclizine.

The Meclizine was the most effective of the other meds I tried. So, we stuck with it. Then, I had a case of flu, which manifested itself mainly in my balance system. For 2 weeks I was bedridden. During these spells, I was forced to sleep almost sitting up. After that flu spell, I had to sleep sitting up all the time. I also cannot sleep on either side. Slowly, the limitations began to manifest themselves. Amusement parks were no longer an option for me. But, I could deal with it, as long as in-between I was relatively ok.

I learned when an attack happened, The first thing I had to do was find a focus point. Anything- a dot on the floor, and focus on it until THAT would stop spinning. I have to keep my head and eyes VERY still. This will last a couple of hours. Then, slowly, with as little head movement as possible, I can make my way to bed, and sitting up, stare at the covers for a few more hours. Gradually, over 3 to 4 days, things would subside. Needless to say, it takes a lot of concentration, which is hard, cuz of the panic the vertigo causes.
A few years ago, I took up figure skating. I know-how crazy is it for someone with dizzy spells to figure skate??? I just hate for myself to be limited by my body. So, I started lessons. Well, as an adult, I'm never going to the Olympics, I won't be doing triple jumps, but, I did take it seriously. Yes, I even learned to spin. Crazy thing was, I felt like I wanted to spin to the right, even tho I jump to the left. Coaches tried to re-teach me-it never worked. (may be a component of the dizzy thing?) ANY way, I did have a period of having trouble with the dizziness when I spun too much, but then a strange thing happened- I went for one straight year with NO spells! I'd get mildly dizzy when I was sick, or when it was "that time of the month", etc... but still, no vertigo. I thought perhaps training my body to spin helped me!

Alas, I was wrong...After the reprieve, I had a spell. OK, I thought, I was due. Then, every month I started getting them. Worse than ever, and it seemed as though I was having a harder and harder time recovering from them. To me, It seemed that perhaps my balance system was being destroyed. I went to a new specialist- (hadn't been to one in years)- I had discovered there were newer treatments for Meniere's, and I wanted to explore them. After more tests, he concluded it was not Meniere's at all. He sent me to a Neurologist, who diagnosed me as having Atypical migraines, and put me on anti-seizure meds. He told me I'd be cured. It was not to be, The spells were worse, and lasted for weeks on end. Recovery was getting slower and slower. In between, my whole balance was off. This Feb. was the worst ever- I cried to my primary care doctor to find me another specialist. To date I've been back and forth-the ENT's telling me it was Neurological, the Neurologist telling me it's inner ear. The last one concluding whatever is wrong, will never be fixed. And, he cannot even give me a prognosis. I fear for my future. It's clear to me this is getting worse-I'm afraid I will soon be unable to work, and then what?! With out a diagnosis even, disability will be harder to get-and the thought of being permanently disabled is just unacceptable to me. My latest Neurologist tells me it would be fruitless to pursue this. Whatever IT is, is so far buried in my inner ear, they'll never be able to see it! My current pattern is a couple of months of being ok, followed by vertigo, dizziness attacks that last for weeks, and are slowly destroying my balance system in general. I am SO frustrated at this point- I cannot believe in this day and age, NO ONE can tell me what the hell is wrong with me, and what I can expect. It seems to me, I do most of the research on this myself.
I know many of you know where of I speak-and I thank you for listening to me vent!

Smtardo@aol.com