Tuesday, July 12, 2011

Ménière’s Disease Part 4

I first met Ménière’s in 2000. One morning in November I woke to a bell clanging loudly in my ear. This aural racket lasted a day before I visited my primary physician. He immediately referred me to a neurologist whose tests revealed nothing wrong with my brain. Next I met with an ear, nose, and throat specialist. He diagnosed Ménière’s disease.
            Flash forward to early May 2006. By then, the tinnitus was often so ear-splitting that I’d debate hitting my head against a wall to knock myself out. I’d lost 70% of hearing in my left ear. The specialist had told me I’d ultimately lose all my hearing in both ears and become totally deaf. Occasional vertigo sent me tumbling to the floor. This type of vertigo lasted only a few seconds or minutes. Nothing rotated. The world briefly whirled, then settled in place. 
            Throughout those years, the specialist dealt simply with what presented itself as it presented itself. First I learned about tinnitus. When I lost hearing, he told me that was Ménière’s. When dizziness started, he added that to the list.
            After the May 11, 2006, incident, he didn’t explain why the vertigo had suddenly changed and become something quite different from what I’d been experiencing. Nor did he give me a name for what had happened. I don't think he or any other doctor knew why. Moreover, I suspect he had no term to offer me. 
            I found the descriptive words acute rotational vertigo episode in a posting by someone who had Ménière’s. I learned that some people with the disease face this symptom often, some never, and some only once. I googled the disease only after encountering this new type of vertigo. I hadn’t done so earlier because Ménière’s wasn’t affecting my life much during those six years. 
            As the summer of 2006 passed, I found words for each of the seven distinct aspects of Ménière’s that I'd isolated in my thinking about it. On any given day, I could be lightheaded . . . tentative . . . slurry . . . imbalanced . . . woozy . . . dizzy with simple vertigo . . . terrorized by acute rotational vertigo.
            This vocabulary spans the gap between “It's nothing to write home about”—lightheaded—and “Get me to emergency!”—terrorized by acute rotational vertigo.
            The night Ménière’s high-jacked my life, I wasn’t searching for words to pinpoint what was happening. I was alone in an alternate world that was spiraling my life out of control.
            My biggest fear was that I’d have an episode that wouldn’t go away—that rotational vertigo would become my new reality. For the next sixteen months, a strong sense of foreboding took up residence within me.


  1. Having suffered from ear problems most of my life and having spent six months of this past year with episodes of vertigo, I can only imagine what your experience with Meniere's must be like. I am sure it highjacked the life you had before.

  2. I am so struck by your courage (and your doctor's apparent lack of alarm or empathy). The notion that one's life can become so utterly, instantly out of control is frightening beyond anything else I can imagine. And frankly, I would have called each and every person I knew to come rescue me. I would not have been able to deal with that on my own. I am riveted to this story!

  3. This sounds frightening, Dee and I am so sorry to hear you have this in your life. My husband has tinnitus which has become progressively worse onver the last couple of years. It bothers him a lot at times and I have noticed that his hearing is not as good as it used to be. I sincerely hope Meniere's is not the natural progression taken by tinnitus!

  4. He sure didn't prepare you or inform you about the disease at all. I suppose he figured since you had mild symptoms don't alarm you? Geez! It was much more terrifying to have something happen you had no clue could even happen!

    I can totally see why that fear of it not going away would haunt you. Especially when the episodes could last so long!! You are a truly amazing woman, Dee! You have battled your demons up close and personal--and remain a shining soul! :):)

  5. I've not heard of this disease before. It sounds frightening, to say the least!

  6. I wish for words of comfort -- you amaze me with your ability to cope and to write so clearly and effectively about what happened to you and the inability of the medical profession to offer any kind of solace. Like many others I've not heard of this disease before.