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  1. Bridget Ball

    I’m on week 4 of constant bobbing and the feeling of waves coming up under a boat… but when sitting it feels a little better like I’m on a raft in a pool. We traveled by CAR on an 8hr trip. I ended up not going with family on adventures due to this bobbing sensation. I thought for sure it would go away. I’m naturally sensitive to elevators and escalators… but I’ll only feel the sensation for a few minutes afterward. I finally went to the DR because I’m at my wits end and am going crazy! I showed my Dr the diagnosis of MdDs but to no avail… she’d never heard of it. Anyways, she said there’s nothing I can do but maybe take some dramamine and see if it goes away. I’m in a severe depression over this. I have to hold on to my kitchen counters and furniture in my bedroom to keep from falling…. but I always catch myself. I LOVE to be in the car though!! That’s the only place I find relief. I’m waiting to join the FB group. Hopefully I’ll be added soon. I’m willing to travel anywhere to seek treatment!! Going nuts here I am terrified that this MdDs is NEVER going to go away!

  2. Lyn

    Has anyone been to the Mt Sinai clinic in NYC for treatment? They say they have a 75% success rate. Would be interested to know.

    1. MdDS Foundation

      Lyn,
      Dr. Dai and his team at Mt. Sinai have not reported that success rate to us. If you join our support group on Facebook, you can review past conversations as well as communicate with other MdDS sufferers to learn the outcomes for those who have been to NY.
      https://www.facebook.com/groups/MdDSfriends/

  3. LOUISE

    I am so thankful I found this site. I too have this and I can not believe how debilitating this is. I was fine then went on my first cruise which I couldn’t wait to go on, and now I am not the same person. Today was horrible.. yesterday wasn’t as bad. who knows what tomorrow will bring. I pray for relief for all of us who share in this horrible syndrome. I am a nurse and I never heard of this before. Hard to believe that so many people are suffering from this. It comes on like a thief in the night.. you would never know that you are being robbed of your life as you knew it before MdDS. May The Lord provide a cure for all.

    Louise (have been rocking now for 3 months, and it seems to be getting worse. Mornings used to be normal and now they are not..

    1. Louise, we’re sorry to hear that you are rocking but glad you found our blog. The MdDS Foundation website is a great resource for information, and as are our online support groups. There are caring people there who can offer support, and you can scroll through past posts and search topics for more information. Hope you are feeling better soon.
      http://www.mddsfoundation.org
      https://www.facebook.com/groups/MdDSfriends/
      https://groups.yahoo.com/neo/groups/mdds_support/info

  4. The rocking sensation seems like a perpetual earth quake, or like walking on a lumpy mattress. One thing that has helped me a lot is using a sturdy walker. I use it in the house and when I walk out side. This started about eight years ago. We flew to Hawaii for a week for a cruise. It was our 50th wedding anniversary.
    Soon after that the rocking started. I’ve also had tennitus for a long time, since 1980. I’m 80 this year. Is it just be old age creeping up on me? The sensation never stops unless I lie down or am sitting. I also feel like someone is pushing the back of my head. It takes courage to go anywhere. I’ve stopped driving and shopping. Fortunately my husband is a jewel and he takes me to exercise, church, quilting, etc.
    Thank you for putting into words what I experience each day.
    Kathleen Martens

  5. Pat Russo

    Somehow I missed this when it first appeared on the support group thread. I am not on Facebook , but I do so enjoy reading these beautiful stories and poems from other members of our group. Many thanks to all of you who write them and to Holly for making them available to all of us. I never stop being amazed at the number of people who are living with this disease and how very difficult it is for each of us. Pat

  6. Nina

    Lois
    You have captured the sensation on paper. I find it so difficult to describe. Although I don’t have the musical notes, I do have occasional ear humming. I understand, and so much appreciate your ability to communicate so clearly.

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