Mal de Debarquement Syndrome: A Rare and Often Misdiagnosed Neurological Syndrome

My personal journey with Mal de Debarquement Syndrome (MdDS or disembarkment syndrome) began over eight years 
ago, even though it is supposed to be a “self-limiting” disease.  I have been part of the MdDS Balance Disorder Foundation to help get recognition for this rare and often misdiagnosed neurological syndrome.

The hallmark symptoms
 include a feeling of rocking, swaying, bobbing, or bouncing after a 
passive travel experience that seems to disappear when a person returns to 
motion such as during a ride in the car. There are a host of other
 associated symptoms such as brain fog, fatigue, visual disturbances,
 headaches, insomnia, and loss of balance.

Despite that fact that Charles Darwin’s father writes about these feelings
 in the late 1700’s after boat and stage coach travel, there has been little research. There 
is no know cause and no known cure. Currently, there are a total of two 
researchers who are studying MdDS. There work is, 
in part, supported by direct donations to the MdDS Balance Disorder

Despite trying many 
medications and therapies, over the last eight years, my MdDS remains much as it was in the
 beginning; the only time I do not feel the motion is when I am in the car 
or asleep. I am barely able to work part-time and some days I cannot take 
care of myself since the rocking motion is so intense, I cannot stand up
 long enough to make a meal or take a shower. Small enclosed places and/or large noisy ones are extremely difficult.

In order for the medical community to acknowledge Mal de Debarquement 
Syndrome, there needs to be education in their training; medical school, 
nursing school, PT and OT training, etc. A well funded research and awareness initiative in every medical school 
around the world would be a great start. Until medical professionals are aware of, 
and understand the detrimental impact MdDS has on one’s life, there 
can be no treatment or cure.

The National Institutes of Health
 (NIH) acknowledges MdDS but does not understand the full negative impact and
 longevity of the disorder. We are aware, the Navy and NASA deal with MdDS but in a
very private manner. If the government were to acknowledge the number of
 cases from these two entities, MdDS would no longer be rare.  We have applied to the cruise lines for
 grant monies to research MdDS which would obviously, be to their benefit.

Currently, there are only two small research studies being done on MdDS, one at Ohio University and one at UCLA. Information about both are
 available on the MdDS Foundation website. The Foundation maintains
 ongoing surveys which collect information about those living with MdDS.
 The results are often published in the Foundation newsletter.

Although it is difficult to maintain hope, I tend to consider that three
 years ago there was no ongoing research into MdDS and there were only a 
few awareness initiatives. A few years ago, my husband and I, along with
 another woman who lives with MdDS appeared on Medical Mysteries with John 
Quinones – it was the first time MdDS or Disembarkment Syndrome had been 
featured on a national level.  

Many more cases of MdDS were identified 
after that coverage, and the Discovery Channel did a segment called “The Woman Who
Could Not Stop Rocking” about another person with MdDS.  

Deb Russo
MdDS Balance Disorder Foundation

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Global Genes Comments

  1. Jepamae Aturdido says:

    Hi! I am from the Philippines.. I have all the signs and symptoms of mdds but I was not diagnosed because physicians here in our country doesn’t even know about mdds so thats the worst part of it..its been 2 yrs and this is my day to day process upon waking up and getting off bed the dizziness is there already until I go to sleep, the feeling gives me anxiety and panic attack and I hate it!I’ve stop working and to make it short my life has totally change from being active person to this boring panicky person.. I don’t know where to get help😭😧

  2. I was diagnosed after a cruise. (it took about a month after my symptoms started to by diagnosed) I didn’t feel any symptoms until a few days after the cruise and then it started. The constant motion. Night time for me was the hardest when I was tired from the day or anytime I was stressed. I would actually have to use the wall to steady myself when walking down the hall. Very unbalanced, visually I walked like I was drunk. At first, I had no idea what was happening and it was very scary for me! This lasted for 6 straight months. I only had relief when I drove my car. I notice it comes and goes for me. I just got back from a trip and I can’t stop rocking. The only time I was on a boat was an 1 1/2 hour tour around some islands. I’m at the point now that at least I know what it is…and try to deal with it the best I can. I have been hitting the “high waves” as I put it for about a week now. This is something I never imagined and trying to stay positive everyday!

  3. Christine St Jean says:

    I have had this syndrome for the past 10 years. In 2007 I did go on a cruise but this did not happen to me until about 5 months after. Driving or riding in a car does alleviate the rocking sensation. At times it’s like being on a lake in a small boat and other times it like being on a very large rough lake in a small boat. I feel like I’m being pushed up on a large roller and then I’m being sucked down as the roller goes away. My concentration span is so short it’s embarrassing. I have been treated and tested in practically every test available . My primary physician said she has never seen this before and my neurologist said he has seen about three patients with this over his career. If anyone out there gets any relief please post it.

  4. I understand there is part of the plane which is best for passengers with mal de debarquement to sit. Does anyone know where this is (i.e. front, back or middle!)

  5. Does anyone know how I can get the programs:
    – Medical Mysteries with John 
Quinones; and
    – The Woman Who
 Could Not Stop Rocking” about another person with MdDS.

  6. Claudia Spann says:

    Eight years ago, I was diagnosed with Mdds. Dealing with this is no fun. I’m coping, however when family and friends seen to be indifferent or dismissive it really hurts.

  7. A relative has recently been diagnosed after 18 months. They don’t feel able to drive. Is this common?

    • For me, the actual movement of the car is my only relief – but at stop signs/lights it can be disconcerting . It took me a bit to get use to it..

    • I get relief from being in a car, boat or train. Probably plane too if I flew.

      She could have Meniere’s disease. Some of the symptoms are similar to MdDS, but they are not able to drive.

  8. I was diagnosed with it over 2 years ago. I was not on a plane,ship or boat. I woke up one day and I was rocking. As time went on I got sicker my ear would buzz loud I would get headaches 5 to 6 times a day and the rocking was out of control. I enjoy the days I feel normal , it’s not often. People can’t sway beside me ,little children can’t walk back and forth in front of me. I take 200 MG of zoloft a day and .5 of klonopin a day. Some days are bad a some are better but they are always rocking. I have learned to live with it. But it’s not easy.

  9. Kathy Tepper says:

    Have had what I thought was vertigo for 8 1/2 months. Just got diagnosed today with MdDS at the Alabama Hearing and Balance center. My ENT recommended this center after all my MRI’s and other tests were inconclusive. The Dr. today nailed it within 30 minutes of talking to me. I am scheduled to start therapy next week, hoping it will be successful. I live 3 hours away, but it will be worth the drive 3 times a week if this succeeds.

    • Would like to know how this goes. I’ve had it for over 2 years. I was diagnosed by a physical therapist. I’m looking into an Otolaryngologist for a proper diagnosis..

      • Kathy Tepper says:

        I highly recommend the therapy. I was approximately 30% improved after the first day. I am fortunate in the fact that I have never been prone to vomiting, as most people who are do become sick during the therapy. My therapy started with neck exercises, and progressed to sitting in a chair while looking at a wall with markings making a X, approx. 48 in square. I was to look at the upper left mark, down to the lower right mark, and back to the center mark without moving my head. Then look at the upper right mark, down to the lower left mark, then back to center. This was to continue for 1 minute, then rest 30 seconds, then repeat for about 10 sets. Then we got up to walk while I turned my head left and right, while keeping my eyes fixed on an object in the distance. The therapist had a large belt around my waist to keep me from falling. Then we walked with my head moving up and down with my eyes fixed on the distant object. Then back to eye chart, but moving my head with my eyes moving with it looking at the marks. When I got home that afternoon, I felt the closest to normal I have felt in 9 months. Day 2 involved same walking, except moving my eyes with my head left and right, and the next exercise moving head up and down with eyes moving. Then treadmill for 10 minutes. I am so grateful that something is helping.

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