New treatment successful for the rare and debilitating Mal de Debarquement Syndrome (MdDS).


People who suffer from a rare illness, the Mal de Debarquement Syndrome (MdDS), now have a chance for full recovery thanks to treatment developed by researchers at the Icahn School of Medicine at Mount Sinai. Their opensource study is published in the Frontiers in Neurology.

People often feel a sensation of movement, called Mal de Debarquement, after they have finished boating, surfing or a sea voyage. The symptoms usually disappear within hours, but in some people, and more frequently in women, symptoms can continue for months or years, causing fatigue, insomnia, headaches, poor coordination, anxiety, depression and an inability to work. Known as the Mal de Debarquement Syndrome (MdDS), the rare condition is marked by continuous feelings of swaying, rocking or bobbing.

The study has provided the first effective treatment for this troublesome disorder, and the researchers hope it provides relief to the thousands of people who may be affected worldwide.

Until now, there has been no effective treatment for MdDS. Diagnostic tests and early research done at Mount Sinai suggested that MdDS was caused by malfunctioning of the vestibule-ocular reflex (VOR), a mechanism in the inner ear that maintains balance and stabilizes the eyes during head movements.

The new treatment re-adapts the VOR by moving the visual surroundings as the head is slowly rolled from side to side at the same frequency as the subject’s symptomatic rocking, swaying or bobbing. In the study, the head roll caused vertical eye movements (nystagmus), and subjects tended to turn to one side when marching in place.

Subjects were rocked or swayed at about one cycle per five seconds. Generally, three to five treatments a day for one week were sufficient to produce a cure, and the movements and associated symptoms disappeared. Side effects of the treatments were negligible. Seventy percent of the 24 subjects that were treated in this study (21 women, three men, mean age 43.3 years) reported either a complete or substantial recovery for a mean follow-up of approximately one year after treatment. Six only had transient improvement, while one did not respond to treatment.

The work of the team also opens up a new area of research on how the Vestibulo-Ocular Reflex can produce head and body oscillations, and may eventually provide insight into other brain diseases that cause repetitive shaking and tremor of the head and body.

Mal de Debarquement Syndrome (MdDS) occurs only in a small fraction of those who experience Mal de Debarquement, and has been classified as a rare, disabling disease by the National Institutes of Health (NIH). Exact estimates of its prevalence are not available, but it was present in 1.3 percent of patients at a ‘Neuro Otology Clinic’ at the University of California, Los Angeles (UCLA). This suggests that there are hundreds of people with this syndrome in the United States and thousands worldwide

Source:  Icahn School of Medicine at Mount Sinai

 

Illustration: Alix Northrup.

Illustration: Alix Northrup.

7 comments

  • Richard Williams

    I have suffered from Mal de Debarquement Syndrome for over 3 months after a Cruise in September of this year………..I live in Cody, Wyoming is there some clinic closer to me where I can have this treatment……..this will be a God send and this issue is very debilitating. Please advise me……..thank you very very much. Richard Williams

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  • Is there a published set of exercises available to sufferers who cannot go to the clinic? I have suffered for 15 years and would love to be rid of it.

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  • Ellen Houghton

    I’ve had MdDS for a year and I have tried every form of treatment and have had every test. I was wondering if the use of medical marijuana has been tried as a treatment?

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  • AnonymousThisIsEmbarrassing

    Just got back from cruise. Day 5! Still feel like CRAP.

    Last night, I was awakened to a feeling like the ship was going to capsize! No lie. I was hugging the mattress like it was a raft.

    Unsure, where to turn. If I tell a doctor that, what will he do? (I’m a middle aged woman so…)

    Please researchers and sufferers, we need to come together and fix this with a remedy for all (across the country) that works for all (across the country).

    Any advice? Or do I have to shop for a doctor (across the country)…

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  • can you get this in the uk

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  • Eleanor McLean

    I AM SITTING HERE CRYING AFTER ALMOST 5 YRS. OF mDds. pLEASE, DEAR GOD, FIND SOMETHING TO HELP AS i AM ROCKING AND ROLLING EVERY DAY. I am considering mariijuana pills hoping to find some relief. Or give me some exercises to do at home. Please, please, please HELP. This is the pits! Came on out of nowhere after climbing 6 flights of stairs. One cruise my whole life, but small boat riding as a child. Where does this come from? Eyes can not focus when severe bouts. Can not go to Mt Sinai in NY but can go to somewhere in state of Fl. MO ONE in medical field knows of this. Insurance Co. does not know of it so will not pay to help. I want to live my life. Please help!!!!!

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  • Has anyone found a Dr that knows about this new treatment? I have had MdDS since June and desperate.

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