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What is Mal De Debarquement Syndrome?
Mal de debarquement syndrome is a very rare, poorly understood disorder that appears to be related to motion sickness. It is characterized by difficulties maintaining balance and rocking sensations similar to what people experience on ships. In fact, symptoms of this syndrome usually appear shortly after a person lands, or debarks, from a cruise ship, airplane, or another quickly moving, unstable transportation vessel. Due to the rarity of the condition, doctors and medical researchers have not yet discovered a reliable cure.
While most people feel unsteady for a few minutes after debarking from a boat or plane, balance problems can persist for several months or even years in people with mal de debarquement syndrome. Neurological tests on patients with the disorder have been inconclusive. Doctors have not been able to tie the condition to an obvious problem in the inner ear or brain. Ongoing medical research may reveal a genetic component to the disorder or a subtle physical or chemical deficiency in the brain.
Many of the symptoms of mal de debarquement syndrome are similar to more common varieties of motion sickness. On steady ground, it feels like the land is swaying forward, backward, and sideways as it does on a boat. A person usually has difficulty walking in a straight line, and he or she may need to hold onto a stationery object to avoid losing balance and falling down. Balance issues can also affect a person's ability to concentrate on manual tasks and focus his or her vision. Unlike motion sickness, feelings of nausea and dull head pains are usually absent.
Since this syndrome is such a rare phenomenon, it is often difficult for a doctor to make an accurate diagnosis. When a patient reports lasting balance problems, a specialist can perform magnetic resonance imaging scans, electroencephalographs, vision screenings, and several other tests to rule out more common problems. A doctor may be able to make a diagnosis after ruling out other possible causes and confirming that the patient took a recent plane or boat trip.
Treatment options are limited for mal de debarquement syndrome. Drugs that are commonly given for motion sickness have been found to be largely ineffective at treating the condition. Some patients do find symptom relief with psychoactive drugs such as benzodiazepines, but existing clinical research to confirm their effectiveness is limited. Most patients have many good days where symptoms are mild between very challenging episodes.
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![Mal de debarquement syndrome may occur after an individual debarks from an airplane.]()
By: SailorrMal de debarquement syndrome may occur after an individual debarks from an airplane. -
![Individuals suffering from mal de debarquement syndrome have difficulties maintaining balance.]()
By: LoloStockIndividuals suffering from mal de debarquement syndrome have difficulties maintaining balance. -
![Mal de debarquement syndrome may occur after one debarks from a cruise.]()
By: James SteidlMal de debarquement syndrome may occur after one debarks from a cruise. -
![Mal de debarquement syndrome appears to be linked to motion sickness.]()
By: carla9Mal de debarquement syndrome appears to be linked to motion sickness.
Discussion Comments
I have this disorder. I think it was triggered when I had to switch from sleeping on a regular mattress to an airbed (not as bad as a waterbed.) I've had it a year and a half. I called it “Disqeuilibrium” because I didn't know there was an official name and foundation for it.
Yes, in the car I don't feel it, but sitting at a desk and walking, it's constantly there. For those who don't have it, think about trying to walk on a bouncy house or a suspended rope bridge (like they have at some theme parks) or my best description is trying to balance on a circus teeter board on top of a ball; it goes in all directions and does not give you a feeling of being on solid ground. I must rebalance myself with every step and that gets exhausting.
Many say that the barometric pressure affects how bad it gets. For me, when it's super-cold, I can barely walk, yet on some rare days when it’s hot, sunny and the pressure must be just right (I don't know what that is though) I can almost walk normally, but then it gets worse again. This is hard because I was a pro dancer with a well developed sense of balance and now it throws me off completely. I tend to lean to the right as I hobble forward.
I have pain in my feet, and my podiatrist says it's probably from trying to use my toes to grip the ground to help keep my balance. I went to vestibular therapy for several sessions and the therapist thought it was an inner ear problem -something to do with crystals in the ear but it's not and the exercises didn't help.
I also have lymphedema, where the lymph fluid doesn't flow properly through your system. I gained 10 pounds a month for six months from that fluid. I went from 145 to 205, so it's like carrying a big water jug and having to shift it from one arm to the other with each step while trying to navigate forward on steps that move (like on that show Wipeout, where the contestants have to move from one moving object to another.)
Doing hygiene tasks is hard, and it takes me three hours to take a shower. I have another rare disease (Morgellons) that requires I shave my head or my scalp gets super itchy. Can you imagine trying to shave your head while bobbing and swaying in a shower? I need to get a bench so I can sit down on it.
Some say it's like being on a rocking boat in the middle of a storm. I've had it a year and a half and I don't know if it will ever go away. Very little research is being done on it so I will probably die before they find what area of the brain is affected and medicine to help it. MdDS doesn't kill you but it messes up your life and that of others. I wish anyone who has this the best that God can give you.
After reading a bit on the internet about mal de debarquement syndrome,I found that doctors and scientists know very little about this condition.
But there are quite a few doctors who think that it has to do with the inability of the brain to regain its former balance after the brain has adjusted to the imbalance of being on a boat or plane.
Some sufferers of this syndrome report that they feel better riding in a car.
I was glad to read that there are some studies going on to find out how the brain is involved.
Also, it's kind of neat that there is a "Rare Disease Day" -- google it, you'll see the site. There are some support sites too, where you can read about other's experiences with mal de debarquement syndrome.
Some of these very rare disorders, like mal de debarquement syndrome, must be very frustrating for both the treating doctors and the patients.
I would hope that after the first cruise or airplane trip, if mal de debarquement syndrome symptoms affected one's life long-term, that they would avoid cruises, boats and planes.
Does anyone know if the syndrome improves as time goes on or does it stay pretty much the same?
@ceilingcat - Well, keep in mind doctors aren't infallible. One person can't know everything!
I find it interesting that no one knows exactly what causes this illness. I bet if they could figure out the cause it would be easier to find a treatment. Sadly, rare disorders don't get too much attention unless someone famous comes down with it!
I really hate to hear about rare, difficult to diagnose diseases. I had an experience when I was younger where I was sick and it took a bunch of doctors about a year to diagnose me! I guess I'm still a little bitter.
But as far as mal de debarquement syndrome goes, I don't understand how it could be that hard to diagnose. I feel like if there is an easy to read article about it on the Internet, a doctor ought to be able to find the information!
@manykitties2- I completely agree with you. I love to read so every time our family goes on a long trip, I take a good book. However, I get terrible motion sickness when I ride and read. It makes me so nauseous and dizzy. My doctor just started me on treatment for vertigo which I'm not sure if I really have.
That doesn't even come close to the people who have Mal de Debarquement Syndrome. I cannot imagine feeling that way all of the time. I also commend the doctors who are properly diagnosing this disease as it could be very hard to distinguish it from something like vertigo or just plain motion sickness.
It is interesting to read about this disorder because I had a family that I worked with you had a young son who was four or five that had autism, and this family took their son on a trip on a cruise ship.
They were a little worried about how he would physically feel on the cruise ship, as this child was already a bit floppy in his movements and would fall walking on occasion.
In the end; however, they found that they felt he did better on the cruise ship than he did on land! This made them wonder if the sensory experience of being on a large cruise ship calmed him or something like that!
So it seems that maybe on a very small scale that the cruise ship had the opposite effect on him as opposed to someone who was experiencing the mal de debarquement syndrome symptoms.
@letshearit - You really get a sense of how important balance is when you start reading about something like mal de debarquement syndrome. When I was little I used to suffer from motion sickness when I was riding in cars and it was terrible. I always felt so disorientated and unable to walk straight after I got out of a vehicle. My poor parents used to have to carry a barf bag just in case.
I wonder how people with mal de debarquement syndrome go about taking care of their homes? What about their ability to do simple things like take a shower and go to the store?
It must be really hard to live a normal life if you are always feeling like the world is moving when you're standing still.
It must be terrifying to suffer from mal de debarquement syndrome. I can't imagine getting stuck with that just off the boat feeling any longer than necessary. I know whenever I get off of a boat ride I tend to wobble for a bit, but I usually get over it after a few minutes on solid land.
To be honest, the worst thing about mal de debarquement must be the inability to do any job that requires coordination. If you feel the world is constantly moving around I imagine there would be tons of things that you wouldn't be able to do easily. Even getting a glass of something to drink would be a challenge.
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