Rare Disease Mal de Debarquement Syndrome Often Affects Quality of Life

Mal de Debarquement, which literally means sickness of disembarkment, is a rare disease that usually occurs after a cruise, aircraft flight, or other sustained motion event.

Not quite two years ago, my wife and I stepped off a seven day cruise adventure of the Caribbean. It was our first cruise, and our hope was that it would be a good way for my wife (who has severe and crippling Fibromyalgia and chronic fatigue syndrome) and I to vacation together. Instead, it turned into a nightmare for me, with symptoms of a syndrome that continues to challenge and affect my quality of life to this day.

When I disembarked from the ship, my balance was off, and I felt as if everything under me and around me was bouncing and floating. I figured I just had to get my land legs back. A week, then two weeks went by, and I still felt the same way.  Neither Urgent Care nor our primary doctor could figure out what was going on with me, so we took to the internet and found the MdDS Foundation. It was a Godsend to find a portal of information, that at least offered the beginning to possible answers.

Perhaps the most bizarre part of my story, is that the majority of people who end up with this syndrome (that is rare, poorly understood, and can linger for months/years/who knows how long) are women who are in their 40’s, suggesting that it is possibly a hormonal condition. I was obviously the opposite, a man in my late 40’s, and I came away from a cruise with MdDS. Much information about Mal de Debarquement syndrome (MdDS), available on the MdDS Foundation’s website, suggest this rare disease is not always caused by a cruise.

For me, it has essentially been almost 22 months of a sensation that, when I walk, I am walking on a mattress, and when I stand or sit, it is as if I am on a boat that is floating on water. My balance, as a result, is severely compromised; I am tired most of the time, and my level of energy is about a tenth of what it used to be. I get migraines after every extended (more than an hour) trip I take, be it on a plane, in a car, on a train, on a bike, etc. The migraines typically last 10-16 days.

I do not know when or if I will ever get better, but I am working with a very kind, devoted primary care physician who has been willing to try anything with me. I am grateful for things like the MdDS Foundation as well as the Global Genes Project.  It is sites like these–as well as the kindness and generosity of so many who volunteer countless hours organizing, making bracelets, researching, raising awareness–that make dealing with a rare syndrome just a little more bearable. Thank you so much, all of you who dedicate your time and energy to helping make this a better world for those who struggle with rare conditions.

Filed Under: Uncategorized

Tags:, , , , , ,

Global Genes Comments

  1. Mike, keep you chin up. I’m 79 and just entered my 30th month with MdDS of ever-increasing severity. My two mile walk each day began with a little wobbling and I now use a hiking stick shortened to cane length. My greatest fear is falling and I pray I will have the sense to begin using a walker before that happens. I have been on a 24 day cruise since the onset 2 1/2 years ago and noticed no worsening of symptoms directly attributable to the cruise. An ENT told me, “Your head thinks you are still on a cruise.” Perfect explanation. I will soon explore hypnosis to see if my head can be shown how to think I am on land.

  2. I have been having these symptoms for almost 6 weeks now. I’m getting really depressed and anxious that this is going to be on going. I have 3 young boys to look after and am finding it difficult to look after myself. I am determined tho to get better. Am trying everything I have read about and have a new doctor who said straight away mdds. There is not a lot of information about this syndrome so am grateful for anything I can find. I’m keeping positive that it will go soon. I hope that others on this thread are better. My heart goes out to anyone who has suffered with this long term.

  3. Rachel Chadwell says:

    Hi Mike my mom has MdDs and I’m doing a project on it for my finial project in psychology. but I’m mainly doing this for my mom. I’d like to thank you for putting your story out there i got a lot of information from your story and i understand what my mom is going threw now.

    Also I had a few questions so if you could email me that would be great


  4. I’ve had this mdds for almost 3 weeks now. I keep hearing people say walk. How the hell is this possible? I can’t walk without swaying I’m at a stage where all I do is cry..im mad and can’t believe this is my life now.

  5. Thanks Mike! for helping us get our stories out there! Tara

  6. Thanks Mike for sharing your story and helping to make awareness of this horrendous rare disorder. I have been a MdDs sufffer’s since June 2009 after a a complete hysterectomy. There is not One day I dont regret having the surgery that change my life completely. My heart goes for you and your wife. May God Bless both of you. And once again thank you so much.

    • I am curious how long after your hysterectomy the symptoms started. I also had a total hysterectomy but didn’t experience symptoms until 10 months later…. and have been having them for the last 5 months.

  7. Vida Twynham says:

    Thank you Mike! As a fellow sufferer of MDDS I appreciate your strength and push in finding positive ways to deal with the crippling symptoms and the need to increase awareness to this condition.
    Health, Peace, Love

  8. Cathy Taylor says:

    Thanks for sharing, Mike. Keeping you and your wife in my thoughts always.

    • Cathy ~ I’m “replying” to you from your post to Mike’s site because I, also, would like to comment, but am not a member of Facebook, hotmail, or the others that are required to do so. Because you know the mechanics which are overwhelming to me, I would very much appreciate your posting the following “comment” for me. Thanks you. Craig

      “Even though I do not have MdDS, you are an inspiraton to me and I would imagine most others who know you. Rather than just talk the talk, you also walk it, continually climbing a much higher, and rougher, mountain, making my own trek seem more like attacking merely a small hill. No complaining “poor me’s” with you. You just keep trekin’, and stretching your limits. It is certainly comforting to have a friend who, instead of just giving free “advice,” gets out and sets the standard.” Anonymous

  9. Thanks Mike for sharing your story. MdDS can affect anyone, and it is life-altering. Most sufferers struggle to get a diagnosis because of the lack of awareness and education surrounding the condition. Thankfully because of the efforts of the American MdDS Foundation this is slowly changing, awareness is happening and with it comes the much needed medical research that this often overlooked disorder deserves.

  10. Hi
    Please try doing a lot of walking in the fresh air as this does help and remain totally determined it will go away.

    I have MDDS for the second time not quite so bad this time. I am having hypnotherapy again which is helping but it has been my lack of determination to get better because it isn’t so bad that has been standing in the way.

    Do everything even if you suffer badly for it. Often a really bad day comes before a more normal day. Try zomig (zolmatriptan) for the migraines. My husband swears by that. Good luck and keep on being certain it will go away!!!!!!

  11. Mike, Thanks so much!

  12. Janice Snyder says:

    Thank you for sharing your story, Mike.

Speak Your Mind