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.

28 thoughts on “Rare Disease Mal de Debarquement Syndrome Often Affects Quality of Life”

  1. Janice Snyder says:

    Thank you for sharing your story, Mike.

  2. Terrie says:

    Mike, Thanks so much!

  3. Pat Laing says:

    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!!!!!!

  4. Jane says:

    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.

  5. Cathy Taylor says:

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

  6. 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

  7. a friend says:

    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

  8. Marilyn says:

    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.

  9. Mary says:

    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.

  10. Tara Garner says:

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

  11. Heidi says:

    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 mad and can’t believe this is my life now.

  12. 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

  13. Kylie says:

    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.

  14. Bill says:

    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.

  15. David kravitz says:

    Has been a year-and-a-half ago woke up with mdds getting to my mind trying to stay strong Bennett to15 doctors the Mayo Clinic I still have no answers I’m a male I got this not being on a boat curious if anybody out there just woke up one day and had this syndrome thank you

  16. David kravitz says:

    Has been a year-and-a-half ago woke up with mdds getting to my mind trying to stay strong Bennett to15 doctors the Mayo Clinic I still have no answers I’m a male I got this not being on a boat curious if anybody out there just woke up one day and had this syndrome thank you HELP!!!!!

  17. Pat Russo says:

    I am a 65 yr. old woman who recently returned from a dream trip to Italy and I cannot get off the plane. It has been two weeks with worsening symptoms. I am so afraid.

  18. Don says:

    I am a man about to turn 73 and have had this condition for close to ten years. It began after a Cruise with my wife, father and stepmother. My doctor eliminated Meniers, tried Valium and then referred me to a neurologist who thought it might be related to my hemochromatosis, but found no iron deposits in my brain. He gave me a copy of the exercises which may help, but not enough for me to tell. It’s always worse after I drive or ride, but I still do so. I have also flown overseas a number of times, so I can still function. It seems to be slightly improved by walking and worsened by looking at a computer screen.

  19. To: David Kravitz,
    Hello, mine started about two years ago and progressively got worse. I struggle with it daily. I’m not sure if it’s MAV (migraine associated vertigo) or other cause. Still looking for answers myself. Feel free to email me at

  20. Eileen says:

    I am now 6 weeks into my 3rd episode of mdds. The first lasted 3 months after a 7 day cruise. The second episode started about a month after I spent an afternoon on a lake. The symptoms lasted 8 months. Now 5 years later, after forgetting I should never go on a boat for any length of time, I went whale watching for 2 hours on a fairly rocky boat. I hope the fact that I was able to recover from this will give others hope. I am a nurse whose job demands me to run around all day and also use computers often. I was quite anxious to start work when this last episode occurred. My sister is a psychologist who treats people with PTSD using a method called EMDR to help influence the brain and actually change the way the brain works. Desperate I called her and she talked me through the exercises. It immediately took most of my anxiety away and helped lessen my symptoms of mdds. An interesting thing happened though. I took 5mg of Valium and went to bed after doing the therapy. I woke at 1am and walked downstairs and back to bed with NO symptoms of rocking! I took another 5mg of Valium just to get me to sleep and the next morning I had no symptoms for the first 15 minutes I was up! This has never happened before and the Valium has never helped like that. The professional who discovered this studied and proven technique for PTSD and anxiety wrote a book so people could do this on their own. Here’s the info: Francine Shapiro
    Getting Past Your Past: Take Control of Your Life with Self-Help Techniques from EMDR Therapy. At a minimum it helped my anxiety about living with this and being able to continue working. As I continue to do the therapy it helps lessen the symptoms. We all know the role that anxiety plays in making this worse. I highly recommend this book to help you do self therapy and maybe influence your brain to lesson symptoms. I also have found that staying active and exercising helps. I’d love to hear from people who have had OT/PT for visual and balance therapy. Hang in there. There is hope!

  21. David kravitz says:

    Thanks so appreciate it blessed

  22. David kravitz says:

    Thanks so appreciate it blessed thanks I keep trying keep hopping keep moving forward

  23. I have heard that there is part of the plane which is best for MdDS sufferers. Can anyone tell me if it’s the front, back or middle of the plane. Thanks.

  24. David kravitz says:

    Never give up keep fighting you are not alone blessed. I sit in the back away from engines

  25. Fran says:

    Hi I am going on my first 10 cruise with family and friends scared this might happen to my children or me should I be scared my friends and family have been doing cruises for years excited to gocan’t wait but afraid is there any advice or medicine that would help prevent this

  26. Suzanne says:

    My daughter has just been diagnosed with spontaneous MDDS (not as a result of travel). It has been very, very difficult. She will be trying the Mt. Sinai treatment along with some meds. Cross all fingers.

  27. Jennifer says:

    I was diagnosed with this after a cruise in March. It’s been 70 days today. I have an appointment at Mt. Sinai in July. Praying it will put me in remission. I love life and feel so blessed. I have a 9 and 3 year old boys. I want to be normal to enjoy them. I am 39 years old. It was my first cruise. Now that I know what MdDS is, I know I had it spontaneously when I was 24. It lasted about 3 months and was only at about a 1-2 on the scale. I’m a 3-4, sometimes 5 now.

  28. Jenny says:

    My husband has many of the symptoms of spontaneous mdds for years. I have just found out about mdds. Been to many ENTs over the years and has had no relief. I want to make an appointment with Mt. Sinai. Has anyone had success from their treatments?
    Suzanne, has your daughter had her appointment?

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