Ménière’s Part 5: Living with Terror

Prologue:

Way back in July, I posted four stories about Ménière’s Disease. I’ve lived with this disease for several years now and it can be terrifying if someone has the progressive, intractable kind as I do.

            This week I hope to post three more stories. However, I’m not at all sure you’ve be able to understand these three new postings without the background from the first four. Here are the links for them. The top link is the first of four:

Night Terror

One Fixed Point

Adrift

Ménière’s Disease

For you to read these will take some time and so you may choose not to do so. I do hope that you will read the three postings this week so as to gain an understanding of the side-effects of this disease. You might already know someone who has Ménière’s, or you  might meet someone in the future who lives with it. If so, these postings will help you understand the parameters of Ménière’s.

Today's New Posting:

In four earlier posts, I described the acute rotational vertigo episode I experienced on May 11, 2006.  Afterward, these episodes occurred daily or every two or three days. Sometimes I had two or three a day. Always I had what I came to call brain fog. I couldn’t process my thoughts, remember words or conversations, problem solve, or make a list in my mind.

            My brain wasn’t functioning as it always had. I worried that I might have the beginnings of dementia or Alzheimer’s. I’d always valued my ability to think. Now thinking clearly or sequentially was difficult for me.

            The acute episodes controlled my life. No driving. No walking outside without someone’s arm to lean on. No working in my rock gardens for fear of falling and hitting my head. No taking a shower or a bath for fear of having an episode and either simply banging my head against the tub or drowning.

            No reading of books, cereal boxes, mail, newspapers, cooking directions because parallel lines brought on acute episodes. No watching television because movement on the screen brought on rotating. No working at the computer for more than five minutes at a time because scrolling brought on an episode.            

            So what did I do? 
            A friend at the library brought me books on tape and CDs. I listened to those several times a week, meditated a lot, and felt the world rotate around me often. Because of this, I spent most of my time lying on the couch, trying to live within the present moment. With great frequency severe headaches kept me lying flat on that couch. In intensity these were like migraines, but without the accompanying sensitivity to light.

I later discovered that a precipitously falling or rising barometer brought on these headaches. The longest one lasted twenty-six hours. The longest acute rotational vertigo episode lasted twenty-three hours. Having the room rotate around me for that long brought on nausea and the fear that the episode would never end.

                             A picture of myself twenty years ago in an arboretum.

            An optimist, a never-say-die person, one who likes a challenge, one who forges ahead and doesn’t always look at the signs, I made so many mistakes. Almost daily I would feel that all was well. Surely today, I’d think, I can work in the garden or walk across to the garage or go up the steps to the second floor. Wanting some control in my life, I’d do these things almost daring the Universe to stop me. And I’d discover, often tragically, that Ménière’s was ever present.

            I’d bang my head against a large stone in the rock garden; I’d crawl back across the side yard to the back door. Stranded upstairs, I’d lie on the bed for hours because I couldn’t bring myself to go down the steps with the world whirling around and within me.

            During all this time, I dreaded going to sleep, fearful that I’d wake again in the midst of an acute episode and that this time the rotating wouldn’t stop. And so I began to suffer all the effects of sleep-deprivation. Truly, Ménière’s hijacked my life.