MdDS Makes You Feel Like You’re Still on the Boat

You’re standing in a small boat tied to a dock, waves moving you back and forth, up and down, and side to side. Now, imagine that you feel this way all the time, even without the boat. You can’t concentrate. Your head hurts. You’ve never felt so fatigued in your life. You don’t know what’s wrong and you need help.

Your diagnostic tests are all returning as normal. After several months of symptoms, you start to wish that you had a brain tumor just to have an explanation. Nobody, neither you nor the physician, made the connection that your symptoms started after you returned from that last vacation during which you were in a boat all day. Welcome to the world of someone with Mal de Débarquement Syndrome.

What is Mal de Débarquement Syndrome?

As a neurologist and scientist who studies Mal de Débarquement Syndrome (MdDS), I have heard countless stories just like this. Today, MdDS is rarely recognized immediately and is often misdiagnosed as Ménière’s disease, vestibular migraine, motion sickness, or even as a form of psychosomatic illness.

MdDS is literally translated as the “sickness of disembarkment.” It is a disorder of rocking vertigo and imbalance that starts after a period of motion exposure, such as going on a cruise, flying, or even a long car ride. Unlike short-lived land-sickness, MdDS can persist for months or years.

MdDS is a brain disorder

The MdDS phenomenon is the natural result of the human brain adapting to environmental motion and is thus the quintessential neurological disorder. How and why the brain gets “stuck” in this entrained state is a question that researchers, including those in my lab, are trying to answer. There is evidence for brain connectivity to spatial processing areas as being altered in MdDS, some of which can be reversed with treatment. This island of insight, however, is surrounded by a sea of unanswered questions that we hope to address with continued research.

For now, what we know is that if MdDS symptoms do not resolve within several months, the chances of remission get pretty slim. Medications such as benzodiazepines and some types of antidepressants can ease the symptoms, but the development of persistent MdDS often leads to other problems such as difficulties with attention, emotional control, pain modulation, and tolerance to sensory stimuli like light and sound.

Patients with MdDS have spent thousands of dollars on vitamins, diets, hyperbaric oxygen, induced altitude sickness, magnetic bracelets, chelation therapy, and antibiotics. Some have even had inner ear surgery to no avail. If you can name it, a desperate person with MdDS has likely tried it.

What physicians need to know

What physicians need to know to distinguish MdDS from other disorders of vertigo or dizziness is that affected individuals feel less of this internal motion when they are actually in motion. Getting into a car or back on a boat is a temporary reprieve from the otherwise constant symptoms. They remain symptomatic when they are still, such as standing or even lying down. In other words, they are never quite able to rest.

It turns out that this under-recognized and understudied disorder affects thousands of people every year, typically middle-aged women, though also a fair number of men. Research into MdDS has shown that factors related to the aging brain, hormonal changes, and stress contribute to the vulnerability of triggering an episode. One could take 15 cruises in a lifetime and have no problems, but the 16th one could trigger persistent MdDS.

I once experienced a brief episode of MdDS myself after a flight from Boston to Los Angeles. After a week, it dawned on me that if the symptoms continued, my medical career would be over. I was lucky that the symptoms eventually abated, but the experience showed me that MdDS could happen to anyone, even otherwise healthy, high-functioning, experienced travelers. Indeed, as more and more people travel for work or leisure in an increasingly interconnected world, recognition of travel related disorders like MdDS will be all the more critical.

Research funding and awareness of how everyday environmental stimuli, such as oscillating motion, can affect human health are needed in order to prevent disability from disorders like MdDS. We need greater insights into how motion disorders are related to brain dysfunction and especially in how to treat them.

Physicians must also play a central role in recognizing this disorder, providing counseling, avoiding unnecessary tests, and making appropriate referrals. Today, many patients go to their physicians with MdDS and get discouraged or derailed. These patients will testify that illnesses without a physical marker are some of the most devastating of human disorders. We need to affirm them as much as we do our patients with heart disease or broken bones.

Though we still need to develop more effective therapies for MdDS, we can at least lay a foundation for recovery by first giving the patients an identity.

34 comments

Discussion Policy
  1. Elaine Nash

    Hello, I am a 64 year old woman, constantly researching to try to establish ‘WHAT THE HECK IS WRONG WITH ME’. 6 years ago I had quite an horrendous horse riding accident, sustaining a compound left ankle (tib and fib) severe whiplash, a fracture to my back at T11 (which got overlooked for 20 months) and bruising. My hospital stay was 14 days, after 3 operations on my ankle to fix it.
    I did appear to make a reasonable recovery but had to have metal implants removed due to metal sensitivity. After this operation I developed a type of unusual feeling! I explained to my doctor and numerous Neurologists and specialists ” it feels like I am in a boat rocking, swaying and bobbing about”! That is 4 years ago, I am still seeing Specialists (even got referred to a Psychiatrist) with these never ending symptoms!
    My life is nothing like it used to be, I was very bubbly, energetic, confident,out-going. I exercised regularly, had a good social life etc., NOW I have no independence! I can not get about our home without holding onto the doors/walls etc., I do not go out anywhere without my husband (in a wheelchair) as my legs literally feel wobbly (but when tested by doctors, they say my muscle strength is good). My vision is 20/20 according to my eye specialist BUT he is baffled that I have a downbeat nystagmus in my left eye and fixation in my right (which is horrendous) most of the time I have double vision. Especially when my eyes move from centre position. I can not do housework or anything much anymore and all the doctors I see cannot come up with anything! Your blog has made me realise I have practically all the symptoms of MdDS (at least it is a relief to find something that fits my symptoms!) I have drove myself mad with worry/anxiety thinking it was life threatening! Please can you send me some literature on this subject. Thank you E. Nash

  2. Edith Hutchings

    Have any patients been treated with ECT I know it is an extreme way to go but perhaps it could help

    1. MdDS Foundation

      Edith, this is the perfect type of question to ask in our support groups, where members discuss the therapies they have tried. As a member, you can search by topic or keyword, such as ECT, and of course you may ask questions. Our members are from almost 60 countries and can offer much advice and support. Learn more on our Find Support page.

  3. CHRISTINE ST JEAN

    Thank you Dr. Cha. I’ve found that it isn’t quite so heavy a burden when other people know what I’m going through. One thing I haven’t heard anyone describe is to stand up and close your eyes. If I’m not holding on to something stable I will fall. I think it is important to share all of our symptoms. Perhaps someone in the future may benefit from it.

  4. B.

    Two days ago, an ENT specialist told me he thinks I have MsDS. I was hospitalized briefly about a year ago after a fall at home, where they ran more tests than I can remember, all negative.

    The symptoms abated after a while and I forgot about it. About six months ago the symptoms returned and have been constant for about the last three months. A couple of weeks ago, I had a head MRI that was negative, just like every other test.

    I’m exhausted, I feel sick all of the time, and I can’t focus on my work. It’s driven me to nagging thoughts of suicide. I had no idea that MsDS was even a thing until two days ago – I thought I was crazy and it was all in my head.

    I have an appointment with a neurologist next month and I sincerely hope that they find something else.

    1. MdDS Foundation

      B,
      MdDS can be episodic and we hope you are able to again achieve remission. In the meanwhile, please consider joining one of our online support groups. There are many people (men and women, all ages) that truly understand the exhaustion, inability to focus, and other feelings you are experiencing. https://mddsfoundation.org/support/

  5. GW

    I believe I have been battling this condition for close to 19 years (I am 47). It began after an extremely turbulent flight and is only relieved when driving or riding in a car. I stopped takin cytolopram 3 months ago, which provided some relief, and am now overwhelmed by the moving sensation in my heavy head, head and neck aches, and mild depression. I moved to AZ 6 years ago and am still yet to find someone who understands what MdDS is. I was referred to what I was told was an extremely reputable neurologist. I waited the usual 2 months for my appt and prepared a detailed description of all my symptoms and every test I’ve had done over time. Two days ago I arrived at his office excited and left deflated The Dr said he read what I sent but it was very easy to tell he did not. I began to mention MdDS and was cut off and told it was the same as vertigo. I then had to point him to the paragraph on my recent VNG test result that explained my significant nystagmus which he said I did not have.. I was thankful I brought my wife for the first time who witnessed this debacle and complete lack of care and understanding I’ve explained to her for years. Can anyone direct me to someone in AZ? I cannot express enough how any advice is appreciated. I’ll take 50% improvement just to be the husband and father I used to be and stop having to hide this from everyone.

    1. MdDS Foundation

      GW, please send us the name and address of the neurologist and we will mail a Letter for Professionals and educational brochures to his practice. Email the contact information to mddsfoundation@yahoo.com. Please include a request for the letter and brochure in the body of the message, as the mailbox is checked by various board directors. Thank you.

    2. CHRISTINE ST JEAN

      I have had this syndrome for 10 years. It just happened. It was not from a plane or a boat. Your experience with the neurologist is what happened to me several times. I’m sure their lack of interest is a sign of their frustration but it’s still another action that causes us to have more depression. I had one neurologist tell me he had never heard of MdDS, and yet when I looked at my paperwork when I left the office MdDS was the diagnosis he had written down. That was extremely depressing. We go in with such hopes that someone will know what to do to help us and we leave without hope. I have been seeing my primary physician for 10 years, and she said she has never seen this disorder before. I am lucky in that I do have hours that the rocking and bobbing will go away.

      1. GORDON DUNKIN

        I am a 78 year old male and have had MdDS for 9 years. Ditto to just about everything that has been said except that I have never been without it. I have stumbled and fallen sometimes, but I haven’t seen that mentioned.

  6. Kathleen Evans

    I was recently diagnosed by a neurologist with MDDS. I think I started having sometimes after a boat ride, but I can’t believe that one boat ride caused my dizziness. I have been an avid boater since I was eight years old and have never experienced any dizziness until the past year. I am not 100% certain that I actually have MDDS, while I experience a rocking sensation I do not have serious balance issues and when I am sitting or lying down I feel great with no dizziness at all. I am only dizzy when I am moving. It feels like I am on a boat dock when I walk and move around, however sometimes I experience no dizziness at all when I am moving. If I do have MDDS I think I have a mild case. I hope it doesn’t get worse in years to come .

    1. CHRISTINE ST JEAN

      Kathleen. After reading different descriptions from different people I feel that there are different degrees of this syndrome. I too feel more balanced when I am lying down and I do have days that I am free from the moving motions. None of these feelings would I ever describe as dizziness. I just feel like I’m not balanced. Each conversation with my physicians starts out with how is your dizziness. I say, I’m not dizzy , I am rocking and swaying and bobbing. Some days are worse than others. Some days are better than the others.

      1. Kathy Evans

        Yes you are correct! I definitely feel rocking and swaying kind of like I’m walking on a boat dock. Thanks for the clarification. I will not use the word dizziness to describe my symptoms.

    2. MdDS Foundation

      Kathleen,

      Onset following an activity which many of us have done prior, whether taking a flight, a boat ride, a long car ride, etc., without consequence is part of the MdDS phenomena.

      You have some similarities with Cathy Helowicz, who was recently interviewed by the Washington Post. She is a lifelong sailor whose MdDS onset followed 2 days on a boat. You can find a link to her story and many more on our Media page. Not mentioned in the story, for lack of a better word Cathy also used the term “dizzy,” which contributed to her being misdiagnosed.

      Semantics aside, we are glad to hear that your neurologist is able to diagnose MdDS. We hope that you get to a point of no “dizziness” at all very soon.

  7. Darlene ONeal

    I was very lucky that the second neurologist diagnosed me.
    The difference was she really listened!!
    I was the first patient she had seen with MDDS.

    1. MdDS Foundation

      Darlene, is your doctor listed in our Find A Doctor tool? If not, please send their contact information to connect@mddsfoundation.org so that we may reach out to them about inclusion. Thank you.

    2. GORDON DUNKIN

      Do any males ever respond /reply?

      1. B.

        Right here.

      2. MdDS Foundation

        Gordon,
        Males tend to be more active in our support groups than on this blog. To learn more about our online but private groups, https://mddsfoundation.org/support/

  8. Judy Huffines

    I was diagnosed with Mal de Debarquement Syndrome in 2008 after a stressful trip to Alaska. I cope with this challenging condition by adhering to a regiment of medication (Clonazepam [doasage redacted] a day and [redacted] sertraline a day). I try to control my environment to elevate (sic) triggers that intensify this disorder. I also try to remain active by walking outside and doing yoga. I was in physical therapy for 5 years and this helped me get to a place where I could do yoga. I had brief episodes of MdDS in my late 20s and early 30s on more than one occasion after boat trips. I was prescribed a low dose of valium by ENT physicians and symptoms would disappear after a few weeks but the Dr’s never used the term Mal de Debarquement Syndrome. This condition has changed my live forever. I have suffered silently for many years for fear of judgement from family, friends, and my employer. Even my mother, who was a nurse, makes snide passive aggressive comments about my dizziness, and my supervisor often makes comments that make me feel awkward about this sickness. I guess I can understand somewhat, I look normal and I try my best to act normal and push through my life. However, what is going on inside my head is not normal and everyday is a challenge for me. This is what I know. It is imperative to have 2 legs in order to deal with this condition. I cannot imagine balance without both of my legs. I know stress and anxiety makes it worse. Not getting rest makes is unbearable. Loud noise, bright lights, patterned carpet, big box stores, malls, household chores such as ironing and vacuuming aggravate my condition. I work in Excel and that can heighten my symptoms. I feel it is getting more difficult for me to organize my mind and to articulate my thoughts and feelings through speech. I feel like my brain is getting eaten up by a cancer and everything I do takes twice as long as it used too. Mal de Debarquement Syndrome is an overlooked disability and I struggle with it everyday. It is exhausting but I will never give up. I have hope and I am a fighter.

  9. Gwen

    I got off my 7 day cruise to Alaska in 2004 and have never quit rocking and bobbing as you say. The first night I couldn’t sit in a chair, I felt The chair was tilted and I was sliding off and felt I had to try to hang on. I visited all local Dr’s. and they referred me to dizzy and balance clinics which helped a little but still felt like I was walking on a trampoline. Finally saw an ear specialist and he said mal debarquement and sent me to another balance clinic. I gave up. I take no meds for it. I detest grocery stores and trains. Sensitive eyes are a problem. I try to appear normal but never feel that way due to being so careful not to fall. Your articles validate all I live through each day. Thank you

  10. Brenda

    Had a vertigo 1st time 5 yrs. ago. Got better through therapy. Then had another bout about 6 months ago. Am back to my therapy exercises. Helps a little. But I am beginning to realize I will propably deal with this for the rest of my life. Ugh! I’m told it is vestibular vertigo. That just means theu don’t know what is causing it.

  11. Nancy Shen

    I’ve gotten into an unbalanced state after being on top of tall skyscrapers like the John Hancock tower in Chicago. It also happens when standing on a stable unmoving pier, but seeing the waves of water makes my brain feel like I’m in motion. Small boats, vehicles and planes don’t seem to cause a problem, it’s the large vessels like giant ferries and cruise ships.

  12. Debbie Young

    Thank you, Dr. Cha, for your dedication and providing your perspective. It means so much to see MdDS information in print.

    I’m in my 60s and have had MdDS for half of my life now. It came on immediately after a rough cruise. Symptoms continued for approximately a month then began to deminish. Little did I know my life would never be the same. Symptoms returned and I spent years searching for answers, but to no avail. All labs OK, MRI normal, etc. (Did have one doctor suggest I may just want to dye my hair blond, though. Not funny!) So I eventually stopped talking about how I felt. Tried to create diversions and live a normal life. Not always successful, but fell back on common sense approaches to living with this invisible illness. It was not until the Internet was available did I have a clue MdDS existed. I believe it was a link to your early research I discovered. As soon as I read that patients usually felt better while in motion, I knew we shared the same diagnosis. It was then that I finally felt some validation. So, thank you again, Dr. Cha! People suffering from MdDS don’t necessarily have to go through the mental humiliation brought on by a doubting medical community.

    1. Enough of Mdds

      After reading this I feel more disheartened and just time to give up.

      This disorder is unbearable and after over 3 years of rocking and falling what is the point?

      This life stealing beast should just kill us quickly. That would be compassion.

      1. MdDS Foundation

        We are sorry you feel this way. MdDS is a beast. We hope you find some support and compassion. The Foundation and the support groups are always here for you.

  13. Robert Serfas

    My heart goes out to all those people with this disorder.
    I have been suffering with it since 1977, 40 years, and was only diagnosed with it about 12 years ago, after numerous visits to doctors, none of which were able to find anything wrong. My symptoms began after an extremely rough flight in an air force transport aircraft and re-occurred periodically until another motion incident, a wild train ride that set in motion ( no pun intended ) the continuing daily saga that we MdDS rockers know. It is heartening to see some recognition of this rare malady and finally research funding to try to solve the puzzle of how it works. I am glad to see the improved website and will be watching for any new developments.
    Good health to all. I hope all your journeys are smooth and tranquil.

    Robert S.

  14. sharon lindsley

    When my symptoms came on – I DID NOT travel – I was dealing with a series of stress causing events ( I believe). I had had a few beers the night before and thought it was a weird hangover reaction – but it never went away…over 2 and 1/2 yrs later. Not letting it stop me – and meditation have helped me to deal with it..I don’t drink anymore but that hasn’t affected it one way or another. just paying attention and taking care of my self, knowing my limits (which I had to find out) Love swimming – no physical resistance, my body get a rest..

  15. Lola Brauer

    I got rid of my MDdS after eight months. I began a treatment with paroxetine for six months. Then changed to fluoxetine and i am on it. It works for me. Sometimes i need a very little dose of alprazolam. But fluoxetine ( prozac) helps a lot. I have had this episodes four times. All during more than three months. Always after a cruise

    1. Christine Lockett

      Hi Lola, many thanks, this is good to know.

      Christine

  16. Christine

    Could you please let me know which kind of antidepressants can be most helpful?

    1. Felicia Lewis

      Yes. Finally, someone has pinpoint what has been happening with me! I kept telling the nineteen doctors I have seen about my problem for the past four years and only a one really understood me. Now here it is!
      Thank you Dr. Cha!

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