Kris's Story

Hi, my name is Kris and I promised that once the cast came off my wrist(another story) I'd pull my story together for Jill. So here it is. One afternoon in late April I got home from work and was feeling kind of,
well, spinny. Like when I was a kid and would spin around in the playground for fun. It wasn't too bad, just sort of weird and, when my husband asked if I wanted to go somewhere with him that evening, I said no. I just didn't feel quite right.

The next morning I woke up, sat up, and was completely unable to remain upright. The entire room was spinning like a funhouse. I fell back onto the bed and slept for another 2 hours. When I awoke the second time I wasn't nearly so dizzy but didn't feel I could go to work.

Fortunately my daughter was away with her school on a mission trip so I didn't have to deal with that. I called in sick and made an appointment with the only doctor available in my primary care physician's office. Now my primary care physician is a really nice guy, I'd recommend him to anyone and all my family and my sister's family use him. He really is great.

Unfortunately the fellow I saw that morning wasn't nearly as wonderful. He looked at my chart, allowed as how I'd been in frequently this year (once for the flu and once for an injury that I ended up having surgery to correct). His every word implied that I was either imagining it or exaggerating the problem. He did write a prescription for meclizine
(antivert) and then he sent me away. No instructions for follow-up, no indication of how long I might have the problem, no referral to someone who might have a clue, nothing. I was furious and confused, too.

I went back to work the next day but, over the course of the next two weeks, I had many severe vertigo attacks. Sleeping through the night was a thing of the past, I'd wake up with the room spinning several times each night. I couldn't function in dark or even dimly lit places. Loud atmospheres were disorienting. I had to move slowly or risk falling.

One fternoon, while leaving the office, I suffered a fairly severe "attack" while leaving the office. There I was clinging to a pole in the parking lot when the security guard found me. Embarrassing. I finally decided that I'd had quite enough and made another appointment with my doctor.This time I got to see a different associate who actually listened to me and packed me off to an ENT.

One visit and the ENT said I had a classic case of Meniere's Disease, which was misdiagnosis number one. One week later I had an appointment with the same doctor that included an ENG and a hearing test. The hearing test showed loss in my left ear in the higher decibels and the ENG showed damage to the left ear as well. Because Meniere's causes hearing loss in the lower registers the diagnosis was changed to Endolymphatic Hydrops, which was misdiagnosis number two.

I read everything I could on hydrops,followed the diet religiously, exercised, and basically learned to compensate for the vertigo. To this day I believe that I did everything absolutely right. And, accordingly, my symptoms subsided. I still would fall over if I stood up too quickly. Had to take care in dark spaces, and spent many days dragging my hand along the wall to remind me of where I was in relationship to the world. These are tricks many of us learn. But most importantly I didn't let it control my life. Not much anyway I was in the play Godspell, for which I was also the choreographer. I described it as extreme theater. It's very athletic, actually aerobic. I'm convinced that the hours of exercise and the discipline of dance every day helped compensate for much of what my body was trying to put me through. And, if I was going to be like this forever, I certainly didn't want that forever to be sitting around doing nothing when there was so much I wanted to do.

The one thing I did do was file what I called "flight plans" with my co-workers. If I was going out at lunch for a run or even a walk I wanted someone to know where I was headed and what time I'd be back.
Just in case. I think that this desire to do as much as I could stemmed from my mother who, after she was diagnosed with cancer, didn't want to do anything until she felt better. The poor woman never did. I just wasn't going to let that happen to me.

Well, I got lucky and my ENT fell off my insurance program. Back I went to my pcp. I requested another referral, this time to a balance specialist if there was one on my insurance program. There was. Two visits, another ENG and an MRI yielded yet another diagnosis ? BPPV. I went back into his office one week after my initial visit and got the Epley-maneuver done. It did not work. Two days later I had it done again and this time it did. I have been dizzy free for almost 2 months and it's wonderful. When I was getting the Epley done there was a woman who had just had it done on her second ear. She had been misdiagnosed for 9 YEARS!!! Now she was on her way to a cure. Now everyone doesn't have bppv. I know that. But I feel so very lucky that I found someone who diagnosed it correctly. Now the funny thing is
that bppv has a very distinctive type of nystagmus (eye movement). It's rotational. No other cause of vertigo produces rotational movement. So how could it have been misdiagnosed? I have no idea. I simply feel very
blessed to have been cured Now, just as a final note to this, typically for me, long story. All, absolutely all, of the information that I got that helped me deal with the vertigo before the bppv diagnosis I got from this website. It is truly a blessing and I will be eternally grateful to everyone here for their support and encouragement. Know that you're all in my prayers