Tuesday, September 20, 2011

Ménière’s Part 5: Living with Terror

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:

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.           


  1. wow.

    first - Melynda sent me over and I'm so glad I came. your posts are so strong and emotional.

    second - I'm so sorry for your disease. I'm suffering from one too. Although it's not as bad as yours so I can't even imagine what you're going through.

  2. Hey lady. I'm so sorry you have to deal with this. I had never heard of this until you told me about it. You may have some traffic coming your way today. Big hugs my friend..

  3. Five years of having suffered from this disease! And, from what you've told us, it's "progressive and intractable". I do so hope you are going to tell us that there is some kind of treatment to help manage the frequency and severity of these episodes, Dee? From your incredibly articulate writing, your clarity and depth of understanding (those being the areas that I understand are affected most during an episode), no one would ever guess you were living with this unimaginably frightening disease. It certainly does not make itself at all apparent when you are not having an episode! I am eagerly 'hanging in here' to hear more. I want to know how you have succeeded in being able to reclaim the control you appear to have, else how on earth would you be able to write the way you do? I do not mean to sound disingenuous! I am truly in awe of you and really do want to know how you have 'apparently' managed to overcome this, or rather, how you overcame the horrific impact it had (still has!) on your life. You truly are an enigma, Dee and I say this with the greatest respect.

  4. All I can say is that it must have gotten better, enough anyways, for you to be able to be writing about all this--and that makes me sooo happy! To know that you have come out the other side, so to speak. But so sorry you had to go through all of the physical and emotional torture of this disease. I'm waiting to hear if it finally abated, or if it subsided enough to be controllable. We sure never know what life is going to dish out, do we? If I were there I'd give you a big hug!! :):)

  5. I can't imagine how scary. Having Ménière’s must be terrifying.

    On a side note: That is such a nice picture of you.

  6. I am emotionally exhausted after reading today's posts & the 4 previous ones you cited! Your writing style is so vivid that I felt I was having an episode along with you. I cannot understand why you had to wait a few days for an appointment, let alone have the doctor dismiss your ilness in such a cavalier manner! I am so glad you had the sense to look elsewhere for help--even though there was sadly little help available. You didn't tell us--did you ever regain your hearing?

    I love you, beautiful lady!!! Please see my comment in the well deserved post CRAZY WORLD wrote about you today.

  7. Hugs and prayers. Forgive me if I sound overbearing. I yet have to understand Menier's disease. My daughter's face is into Merk Manual all the time. May be she can help me understand it. I hope that you have safe space where you live, I mean hallways free of too many things and kitchen safe from greese and bathroom with rails etc. I will go back and read all your previous entrees. Right now I have problem with breathing and my hubby's got to go for his echo cardiogram. There is always somthing isn't it? Hi this is Munir over here at Focus. With today's protocol with our medical practices I am not surprised at all about delays and neglets.

  8. Hi, came over form Melynda's blog. Yours sounds like a very harrowing fight, yet you sound so calm amid all that whirling. I really hope you're doing better, glad I found you

  9. I was here earlier and read the post and had to leave before commenting. I got so far in to your story that I was physically uncomfortable and frightened. I love that you found ways to accommodate and find peace in the silence that was imposed on you. I'm impressed.

  10. Something has helped you to find peace that you communicate to others. Whatever it is, I am so glad for it. Your writing is clear and compassionate, it never wavers. I am glad to have found you, and to share your journey through your posts...

  11. You are such an amazing writer, that I can't even begin to fathom the toll that this takes on you!
    But the fact that you fight it, find a way through it and continue to go on is an inspiration and a testament to what a wonderful woman you are!

  12. Dee, thank you for sharing. One of my family members lives with a chronic, incurable illness as well. It's hard, unfair, frustrating and scary. All we can do is take one day at a time.


  13. its so inspirational..not many will fight back. i am so glad to meet you and follow your blog.thanks to melynda:)

  14. My favorite crazy lady sent me your way and I am so happy she did. Got some serious exploring to do here. Keep up the good fight, my hats off to you.

  15. After an episode of positional vertigo, I am so grateful to have my world right-side up and stable. Thanks for the reminder.

  16. Dear Dee,
    This disease is so awful, and yet, you so gracefully rise above it. You are such an articulate, and prolific, writer. (And reader! You are always "on top" of reading everyone's blogs!) I am hoping you will share that you suffer much less frequently now than five years ago.

    Thank you as always for your clear and understanding comments on my posts. I consider you a wise and wonderful friend!

    Be well!

  17. Hi! I had to come by here after I saw a comment you left on Rita's blog. I am keenly curious to read about your life. I also want to know about Dulcy! I will come back and read you often. Thank you for sharing your story!