Mal de Debarqument Syndrome (MdDS) literally means “sickness of disembarkment.” It is a rare and not well understood disorder impacting the vestibular system. A person with this disorder feels unbalanced, or has a rocking sensation, after disembarking from an ocean cruise, airplane trip or other motion experience. The majority of people will feel a sensation of motion after such an experience but this lasts only a short period, with two days being the upper limit of normal. However, for those suffering with MdDS, this sensation can persist for a month or up to a year. Uncommonly, MdDS can continue for several years. The disease course is different from person to person and may lessen with time yet can return at different intervals. Sometimes, it may just resolve spontaneously.

The epidemiolgy in the US is still not known. Usually, it is most common in middle aged women and happens in those who were previously healthy. There are no studies delineating the difference across races or other demographic factors. It can result in trips as short as 30 minutes.

What are the signs and symptoms of MdDS?

  • Feeling of rocking/swaying/disequilibrium
  • May be accompanied by anxiety or depression
  • Nausea
  • Seldom is true vertigo observed
  • Symptoms are usually worse when patient is an enclosed space or trying to be motionless, such as lying down in bed
  • Stress and/or fatigue can make the symptoms worse
  • It negatively impacts the patient’s quality of life

MdDS occurs when an exposure to a movement sensation occurs and then is removed. No one knows the exact underlying etiology for certain. However, the leading theory is that it most likely starts in the balance centers in the brain and not the inner ear. It has been theorized that the brain sends out signals to regulate the stimuli of the new motion to the legs and other body parts to preserve the sensation of balance, or as it is called, finding one’s “sea legs.”

This maintenance of balance continues after disembarkment. In some, the brain does not immediately return to the old pattern of orientation. Another theory is that MdDS is a migraine variant.

At the present time, there are no diagnostic tests to detect MdDS. Rather, the diagnosis is determined by history and exclusion of other diseases. No structural abnormalities are detected on brain MRI. Inner ear function tests are also normal.

Furthermore, there are no known cures for this disorder. Medications such as Meclizine and scopolamine used in the treatment of motion sickness usually offer no benefit in patients with MdDS. Some treatments that have shown some potential effect include benzodiazepans, vestibular rehabilitation, and tricyclic antidepressants. While there is no prevention other than avoiding similar trips in the future, some have seen the use of benzodiazepans before travel provide some relief. Some positive results have been observed with neuromodulation and modulation of the vestibule-ocular reflex.

Most research studies currently being conducted in MdDS are focusing on developing an understanding of this disease.

 

About the Author

Headshot-2Dr. Linda Girgis MD, FAAFP is a family physician in South River, New Jersey. She has been in private practice since 2001. She holds board certification from the American Board of Family Medicine and is affiliated with St. Peter’s University Hospital and Raritan Bay Hospital. She teaches medical students and residents from Drexel University and other institutions.  Dr. Girgis earned her medical degree from St. George’s University School of Medicine. She completed her internship and residency at Sacred Heart Hospital, through Temple University where she was recognized as intern of the year.  She is a blogger for Physician’s Weekly and MedicalPractice Insider as well as a guest columnist for Medcity New, PM360 and HIT Outcomes. She has had articles published in several other media outlets. She has authored the books, “Inside Our Broken Healthcare System”, “The War on Doctors” and “The Healthcare Apocalypse.” She has been interviewed in US News and on NBC Nightly News.

47 thoughts on “Unraveling Rare: Mal De Debarqument Syndrome”

  1. Elizabeth says:

    Curious to know if there is any connection to mast cell activation disorder. The symptoms overlap with common MCAS symptoms and many people with MCAS respond well to benzos because there are benzo receptors on mast cells.

  2. Sam Lore says:

    Thank you for the article but…I only wish it lasted for up to a year. In my case it has been 13 years and I know of people who have been rocking since World War II. There are demographic studies. The middle aged woman statistic is incorrect since MdDS is well know to NASA, the Navy, and other male dominated organizations who recognized MdDS for many years. Much more research is needed and I hope you encourage your medical students to recognize and research MdDS.

  3. Deb Russo says:

    A number of years ago I was a guest blogger on this site to tell my MdDS story.
    https://globalgenes.org/raredaily/mal-de-debarquement-syndrome-a-rare-and-often-misdiagnosed-neurological-syndrome/ I still have MdDS.. I would love to help educate you and your medical students about MdDS and how long it can last at high level. There is bio-medical research available. Yes, I have participated in research and tried the experimental treatments to no avail. Hope more researchers step up to work on a cause and cure for MdDS.

  4. Brenda Campbell says:

    I have had this Mal de Debarquement Syndrome for 3 years with no remission. It was a result of a cruise for my 65th birthday. The seas were calm and I did not feel sea sick. An invaluable resource for anyone interested in obtaining more information and documented personal experiences is the MdDS Foundation’s website.

  5. Kay says:

    Are there any who struggle with both MS (who have a lesion in the vestibular region of the brain) and MdDS?

  6. M. Abdul says:

    It can last much longer than one year!

  7. Judy Green says:

    Thank you for this article. We who are afflicted with this life-altering syndrome are eager for the medical community to become more educated. I would like to point out that based on many conversations in our MdDS support group, the duration is very commonly more than a year. Mine has lasted 6 years, and there are numerous people that have had it for 15 and even 20 plus years. Also, vestibular rehab is seldom helpful for most of us.

  8. Pam says:

    Going gluten free improved my condition! My energy is back and rocking is minimal–I rock now only when the barometric pressure changes. (Mdds since 2014) I try to stay stress free and I teach middle schoolers, so I’m pretty active and still have energy at the end of the day. I’m almost back to the old me!

  9. Diogo Braga says:

    Hi Linda, I am 30 and self-diagnosed just after onset, when I was 27. I am male, young, hungry for life, but I can tell you I can’t remember what means normal. I take daily doses of clonazepam and fluvoxamine and I did get some relief (mainly by clonazepam) during the first 2 years of treatment, but suddenly it seems it does not work anymore (at least not in the same way…). I’ve undertaken countless of tests, including MRI and vecto (The first vecto – just after onset – came normal. I did vecto again 5 months ago and apparently I developed other vestibular issue, not only mdds.). I can say that come back to passive motion helped me a lot, like driving (but this is not the case anymore). I hope this short story may help you. All the best.

  10. Stephanie H says:

    I began having symptoms when I was 17. I am now 34 and suffer much worse than I did at 17, where I had issues primarily after elevator rides.
    Symptoms are also much worse when dehydrated or when going on several motions. Plane, Ship, train, car… which can stimulate a bit of an overdose of stimulation and causing “panic”/”anxiety” attack.

  11. Dawn says:

    Well, I am pleased to see that an article has been written in reference to MdDS. But, this is far more debilitating than anyone could imagine. I have had this since 2010. It never goes away symptoms range from minimum to severe. The confusion and the inability to function on a daily basis is unbelievable. Please don’t downplay the suffering of those of us with this disorders. Some of us have no longer been able to hold a job or properly perform daily functions. I know I have been there. Thankfully I am existing in my new normal pretty well. Spread the word this is a serious disorder and it warrants attention from physician across the country and across the sea. Too many physician are not taking the illness into consideration when diagnosing their parents.
    Just saying. Thanks for listening.
    Dawn

  12. Carolyn says:

    I have had MdDS for 18.5 years so it definitely lasts more than a year. I was diagnosed by Dr. Timothy Hain at Northwestern in Chicago. I woke up with spontaneous MdDS and did not get it from a moving vehicle of any kind. There are many men with MdDS so it does not just affect middle age women. We continue to research to find out the cause of this syndrome. It can be so devastating that careers, marriages and other life issues are direly affected.

  13. Polly Moyer says:

    Thank you for this article, Global Genes – much appreciated. Translating MdDS as ‘the sickness of disembarkation’ can cause problems, however. I know of several people who have MdDS who have been told that since they are not throwing up or even feeling nauseous, they can’t have MdDS. The author, Sam Harris, translates it as ‘bad disembarkation’ which makes it easier to understand.
    Fortunately the opto-kinetic treatment is now available in the UK as well as in the States. We know it won’t work for everyone and isn’t a ‘cure’ but it’s good to have it available here now, for those who can afford it.

  14. Nicole says:

    Happy to say that my symptoms have improved with diet changes (gluten and dairy free) and treatment that focuses on boosting my immune system. I urge everyone with these symptoms to rule out underlying immune system dysfunction caused by toxin overload and stealth infections (I.e. Mold, Lyme, etc).

  15. Tammie Collins says:

    Thank you for this article. It is a struggle to suffer with MdDS and have physicians who have never heard of it, and are not interested in learning about it. I hope that someday every doctor is aware of MdDS and no one ever has to be in the uncomfortable position of trying to educate their doctor.

  16. Eulalee Hubble says:

    I have had MdDS for over 4 years. It took over 3 years, 17 different professionals – – neurologists, ENT’s, physical therapists and even a chiropractor to get a diagnosis. Medications & physical therapy have not helped. Depression & fatigue are my daily companions. If anything around me is moving & I am not, my symptoms worsen. But I will continue to get up early every morning, do laundry & read the paper. Anything else is a bonus. Headaches are a frequent side effect of MdDS symptoms. Mine resulted from a couple of airplane trips.

  17. Judy Fried says:

    This article is mistaken in saying that MdDS occurs ONLY in people who experience a motion event. I, and many others are suffering from a condition called spontaneous MdDS. There is no preceding motion event or any other event to explain why this occurs spontaneously in some people. It is thought to be a variant of migraines, but other than that the etiology and mechanism is even more poorly understood than MdDS that occurs after a motion event. In the meantime, I, and many others like me have been suffering for several months to years with no signs of remission, no answers, and no hope of ever getting better.

  18. Paula says:

    MdDS can last forever. There is a support group on Facebook with almost 2,000 members, and people in that closed group who have had symptoms for over 10 years. Men and women, all ages. I am 60 and experienced symptoms for 4 months following a cruise. I researched and decided I could readapt my Vestibulo-Ocular Reflex myself. I bought an app called OKN Strips, did the Fukuda Step Test, and proceeded to retrain my brain. After six weeks of daily exercising, my symptoms disappeared. I’m one of the lucky ones. MdDS is difficult and life-changing.

  19. Sharon Renschler says:

    Comment from exam by a ear, nose ad throat specialist being advise I have maldebarkment: “Sounds like something a GP coined”. Until doctors are able to advise us instead of us advising them, we’really in trouble (after 16 years)

  20. Mary Jo says:

    I was happy to see people are still interested in talking about MdDs but feel the support group I belong too seems to have more members that have suffered with this frustrating malady for much longer then one year. I was diagnosed 8 years ago within 3 months of the onset. After seeing several doctors a neurologist from Cleveland Clinical was able to recognize it on my first and only visit. Everything he told me about MdDS has come true. He told me the exact cause of it is still unknown, (mine started after spending a night on our boat) each episode would be more severe and last longer. I haven’t had a remission in over 4 years. Each day is different, some days are better then others. I frequently bump into walls, etc. and fatigue is my constant companion. I’ve tried every medication out there and had nearly every therapy suggested. And yes, some days you just want to sit down and cry……..

  21. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  22. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  23. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  24. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  25. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  26. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  27. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  28. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  29. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  30. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  31. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  32. We are always open to patient stories as well!
    https://globalgenes.org/patient_story_submission_form/

    Best,
    Ilana
    Managing Editor

  33. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  34. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  35. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  36. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  37. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/. We’re realizing now just how many people are impacted by this disease and it looks like it needs more voices to help spread awareness!

    Best,
    Ilana
    Managing Editor

  38. Kristen Johnson says:

    Hi there I’m 33 years old and have never been on a cruise or a flight in 10 years. I was diagnosed with mdds April of this year after getting off a treadmill at the gym and the rocking appeared.

  39. Rhonda says:

    I believe this malady is often misdiagnosed as “vestibular” when it is neurological – many doctors don’t know of it’s existence so I think many are suffering alone not even knowing what they have. Once a doctor labels it as “dizzy” or “vertigo” it is hard to convey that it is a rocking sensation. That was the case with me – I first got this over 20 years ago (I was 26 at the time) and the ENT that I saw at that time, was the one that finally had the knowledge to diagnose me a year ago (with my 8th bout). Mine initial bouts were from surgery but my last two bouts were from a plane ride (2014) lasting a couple of months – to this one from a long car ride (still here today) a year later.

  40. Amy Cutrell says:

    Thank you for spreading the awareness. I first experienced MdDS after our honeymoon cruise in 2002, though I was diagnosed with “vertigo.” I ohad it for a few months, and it resolved on its own. unfortunately, I experienced it again in 2009 after a carnival ride with my 5-year old. I’ve had it ever since. It took me two years to be diagnosed correctly. Even though I told the 20 doctors I saw that this is how I felt when I got off the cruise 7 years prior, they told me that there was no way a cruise from years ago could affect me. I was told it was all in my head. It’s important to know that MdDS can come back after a remission. I do think that if I was diagnosed quickly and given the standard meds (benzos), I wouldn’t be disabled from it today. So thank you for spreading the word.
    I am disabled due to daily dizziness, severe brain fog, and extreme fatigue. However I’m grateful to have great doctors, especially Timothy Hain in Chicago, who diagnosed me and all my local docs who help me manage this incurable disorder.

  41. Sandy Brignac says:

    I have had MdDS for over 12 years. I have only been diagnosed the past 8 years after many doctors and test. It has completely changed my life and that of my familys. There are days I can’t get out of bed. Days of extreme fatigue that rest does not make better. Depression over how my life use to be. Having Overwhelming frustration and confusion on day to day life. And the feeling of walking on a trampoline, rocking and dizziness is an unwelcome adventure every day. Not every day is the same so you never know what to expect. Very sad!!!!

  42. Leslie Swims says:

    I have MdDS. I was diagnosed by my vestibular therapist. I have had brief issues in the past, the worst being from a cruise that lasted 7-10 when I was in my 20’s. In Feb of this year, at the age of 39, I flew to Colorado. I had a day of symptoms while I was there and chalked it up to altitude. Upon returning home, I was accompanied by this constant movement. I am now 7 months in and feeling much better, but I can feel this devil still floating in my head. When at my worst, I could not handle being on a sofa with my children or have them grab or move me. My three year old often complains of being dizzy, imitating me. It is heartbreaking.

  43. Katrina Hider says:

    I’ve been diagnosed with mdds for the first time since getting of a short boat and train ride, in January of this year. It has been life changing, unable to work, as computers make you feel worse. Doing anything is just more difficult and socialising is practically out of the question. Gets worse during the day for me and by dinner time I am having trouble coordinating my limbs, so a lot of dropping goes on. Hopefully more research will be done, as a cure needs to be found, so that we can all have relief from this living hell!

  44. M. Abdul says:

    Hi,
    I’m 36 years old and I have had MDDS for over 1 year and 8 months now. I’ve had symptoms before after getting off a boat but it always quickly went away. I got it back in Jan 2015 after a turbulent 10 hour flight and have never gone into remission. It has completely changed my life and even the small things like taking a shower or doing the dishes have become so difficult. It’s been a long and frustrating journey to say the least especially since there are not very many specialists who even know what MDDS is. I pray for us all that one day there will be a cure. Please continue to spread the word.

  45. Anne Hamilton says:

    Thank you for helping to educate about MdDS. I just passed the one-year anniversary of onset after a 7-day cruise. It’s amazing to me how varied our symptoms can be (for example, I experience the highest severity of sensations when standing or bending over) while suffering from the same sensations of rocking, swaying, &/or bobbing. Here’s hoping research starts to find some answers for us.

  46. sam weston says:

    I am not sure if this is what I am suffering from, but reading all your symptoms, it describes me to the T, doctors think it was Migraine associate vertigo, mine started after feeling stressed and just started wearing varifocals, I have good days, but lots of bad days as well. Seeing doctor next week, will ask for what he thinks, I am fine driving but by the time I get home (hour journey) feel terrible, will be good to know if this is what is wrong with me.

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