Still on the Christmas Cruise

I went on a 7-day Christmas cruise, which ended on December 31, 2011. I felt the bobbing as soon as I got off the ship, and thought it would go away in a few hours as I adjusted to being back on land. I had to take a flight back home immediately after getting off the ship. The bobbing feeling, like I was still on the ship, never left me.

I suffered for several weeks, not knowing what was wrong and then went to my family doctor and had a physical in February 2012. Everything was fine except for some anemia and low Vitamin D level. For lack of a better term, I told her about the “dizziness,” as I had no reference to describe my symptoms. She recommended physical therapy.

In March 2012, as my symptoms were not getting any better, she had me undergo an MRI, and could not find anything that would cause my symptoms. She then sent me to an ENT. My hearing was tested and all was normal and he could not find anything wrong. I described my symptoms then as “as if I were rocking and still on the boat”. I told him I was perfectly fine till I got off the cruise ship. He sent a note to my family doctor suggesting it might be MdDS and mentioned it to me. I looked up the syndrome, and was totally shocked to find that the symptoms of MdDS pretty much described my symptoms exactly.

Supposedly this should go away eventually, but mine did not, so I went back to my family doctor in April 2012. I was so very tired, with the same symptoms of bobbing, also some migraines, more ear fullness, tinnitus, and difficulty concentrating. She diagnosed me with MdDS and put me on Clonazepam. It really helped bring the bobbing down somewhat and made me feel much better. After only a few weeks or so, I started feeling very drowsy with the Clonazepam, so I slowly stopped taking it. Since August 1, 2012, I have not taken any medications other than vitamins and supplements, aspirin, and ibuprofen.

In October 2012, I was very fortunate to be able to participate in Dr. Dai’s research on the treatment of MdDS at Mt. Sinai in NYC. His treatment made a huge difference in my symptoms. I felt “grounded” for the first time since getting off the ship. I was brought down to levels 1-2 after Dr. Dai’s treatment, and I give credit for getting me on the right path to remission. He really helped so much! I have been making gradual improvement since then, and now just have the floaty head feeling on some days. I try to get a good night’s sleep and to not stress. Now my symptoms are very low, and I am feeling 99% better!! — But I will NEVER cruise again!
Margaret
7-day cruise, 2011


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Still on the Christmas Cruise was last modified: August 1st, 2017 by MdDS Foundation

17 comments

Discussion Policy
  1. Margaret

    Anne,
    I am so sorry that you have come out of remission after having the flu! It seems that you were doing all the right things to avoid this relapse. This syndrome is so unpredictable! I think there is a good chance you will go back into remission soon since you have been there before. Sending good wishes your way,
    Margaret

  2. Anne

    I’ve had two episodes, both after daytrips on boats. Since the last time I have avoided boats of all kind and have remained symptom free for almost 5 years. Now suddenly, the symptoms are full blown again and I haven’t had any boat or plane travel or anything out of the unusual except that I just recovered from a bout of the flu. I hate the thought that this will be another 6 months of waiting for the symptoms to subside and not knowing when they will pop up again.

  3. amy

    Hi Margaret I’m wondering if Dr. Dai said anything about supplements? I’ve just started taking magnesium and neurological support supplements like coq10, alpha [lipiod] acid and B12.

    1. Hi, Amy,
      I don’t remember discussing supplementation with Dr. Dai. However, I have begun taking magnesium, Vit. D, and B12 supplements, along with iron. I am in remission now. Sorry that I don’t know the answer to your question. You might try posting that question on the MdDS Facebook support group page. Also, the search feature there is a wealth of information.
      Best Wishes,
      Margaret

  4. Anna Helguero

    Hi
    I’m 48
    11 months with mal de debarkment from a cruise 11 mon ago. What can I try that you did to put me in remission? Please share
    You are the first person I have communicated with the same problem.
    I have my faith but some days seem like I’m all alone
    Thx
    Anna Marie

    1. Margaret

      Hi, Anna Marie,

      So sorry that you have MdDS! I replied to your comment, but am not sure that it was posted, so I will repeat.
      The most helpful suggestions for dealing with with your symptoms can be found on the MdDS website.
      I have found that the first months are the worst and symptoms do get better with time. Getting a good nite’s sleep, exercising daily, following a healthy diet, and avoiding stress are most helpful to me in keeping symptoms low.
      I highly recommend that you join the MdDS Facebook group. You will find lots of good tips there and support from many others dealing with this rare disorder !

      Best wishes,
      Margaret

  5. mary

    Margaret, how much time you have been late in noticing improvement after the treatment of the Doctor Dai?

    1. Margaret

      Mary,
      I noticed improvement immediately following Dr. Dai’s treatment . I am still at very low levels and find that getting a good night’s sleep and not stressing keep my symptoms very low. I do not take any medication and try to eat a healthy diet also.
      Hope I answered your question,
      Margaret

      1. mary

        Can you walk well? Do you feel your feet in the soil? How do you feel stop of foot?
        In that level you were your before the treatment?

        1. Margaret

          Mary,
          I can walk well now, but still have days where I can feel a little bouncy. This doesn’t prevent me from exercising regularly, as I think exercise is very helpful in overall health.
          Margaret

      2. mary

        Margaret,
        How do you feel stop of foot?
        In that level you were your before the treatment?
        Thank you very much
        Mary

  6. Karen

    Hi, I just got home about 2 weeks ago from a week cruise. The only time I have felt any relief since being back on land is when I am driving. I have slept the better part of two weeks. I had all kinds of test ran at the hospital I am a 36 year old female. They gave me stuff for nausea and vertigo. I have no other symptoms, I was fine prior to the cruise and during. This has all started since returning to land. I’m becoming very depressed and people think I’m crazy for not feeling well this long. It feels like something is off in my brain, I close my eyes, it’s has if I never left. The cruise. My ears are clear. I did have a migraine on the ship. Please help !!!!

    1. Margaret

      Karen, your experience sounds almost exactly the same as mine! Go to the MdDS foundation website for lots of info to help you understand and deal with this disorder. There are also MdDS brochures you can request to be sent to you or print out at home and take to your doctors (so many have never even heard of MdDS). The good thing is that most people get over this in the first few months, so there us a good chance you will go into remission. I hope that you do !!

  7. Margaret

    Did you have any sinus issues before your trip? I got MdDS last March after staying on a sail boat for a week…NEVER AGAIN. It lasted about a month. I haven’t had it since, but I did experience dizziness recently after traveling. I had sinus issues both times so I thought there was a correlation. Thanks! Margaret

    1. Margaret

      Margaret,
      I had a headache on the cruise while trying to finish reading a novel (my eyes wouldn’t focus), and felt a little “off”, but no major sinus problems.
      I would think that sinus issues might sometimes cause a dizzy feeling, though.
      I’m like you, no more cruises for me!!

  8. aurora

    Can you describe Dr Dai’s treatment?

    1. Margaret

      Aurora,
      Dr. Dai’s treatment involves sitting in a chair in a small circular room while watching black vertical lines moving around the wall in front of you; at the same time, he is moving your head from side to side to a speed that has been determined by prior balance tests. It is about retraining the brain.
      Also, if you are a member of the MdDS Facebook group, you can go to the search feature and find more information posted by other members.

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