What is Mal de Débarquement Syndrome?
Mal de Débarquement Syndrome
Mal de débarquement syndrome (MdDS) is a balance disorder that causes an ongoing feeling of motion, usually described as rocking, bobbing or swaying. Most people with MdDS also feel unsteady when standing or walking.
MdDS can be a remarkably challenging and frustrating condition to live with. Feeling like you’re always moving, when you know you’re standing still, can be exhausting and deeply distressing.
New or ongoing dizziness should be evaluated by a medical provider to rule out other causes. Call 911 for sudden dizziness with weakness, numbness, trouble speaking, double vision or trouble walking, since these can be signs of a stroke.
How Common Is MdDS?
MdDS is considered rare, but we regularly work with people living with it. It has been estimated that about 1 in every 100 people seen for dizziness has MdDS (1).
MdDS affects both women and men and can occur at any age, but it appears to be most common in women between the ages of 30 and 60 (2).
What Are the Symptoms of MdDS?
People with MdDS describe a constant feeling of rocking, bobbing or swaying. Many notice that the feeling eases while they’re in passive motion, such as riding in a car, and returns when they stop.
MdDS usually starts after motion, most often after getting off a cruise ship, boat, airplane or car, but it can also begin without a clear trigger and can flare up on its own. Other common symptoms include nausea and vomiting, headaches, balance problems, brain fog, mental fatigue, anxiety and depression.
MdDS can have a major impact on quality of life. Symptoms can last from days to years, and for some people they don’t go away on their own. MdDS is often misdiagnosed, and it can be difficult to treat (3).
What Causes MdDS?
The cause of MdDS isn’t fully understood. One leading theory is that MdDS is a problem with neuroplasticity, specifically with how the brain’s balance system adapts to motion (4).
MdDS most often begins after time on a boat. When people return to dry land, they feel as if they’re still moving, sometimes described as having “sea legs.”
On a boat, your body is exposed to constant movement from the waves in several directions at once: rolling side to side, pitching front to back and turning.
Your brain naturally learns to compensate for this movement so you can walk steadily on a moving deck. This compensation is thought to involve adaptation of the vestibulo-ocular reflex (VOR), which keeps your eyes steady on a target while your head moves, and a brainstem and cerebellum process called velocity storage, which helps the brain estimate how your head is really moving and which way is down. After returning to land, most people’s “sea legs” fade within hours to days as these systems return to normal. In MdDS, researchers believe some people can’t switch back. Their brain stays tuned to the boat’s motion, leaving them with the constant rocking feeling that defines MdDS (5).
How Is MdDS Usually Treated?
Treatment options for MdDS are limited, and many people find that common approaches help only partly. Standard vestibular rehabilitation, which helps many other balance disorders, often seems less helpful for MdDS. Medications such as benzodiazepines may ease symptoms for some people, but they can cause drowsiness and dependence with long-term use (6).
Some researchers see a connection between MdDS and vestibular migraine, and migraine medications may help some people. Others believe hormones may play a role. Researchers are still working to find treatments that reliably address the underlying problem (7).
How the NeuroRescue Program Can Help
Our care is designed to work alongside your physician and other providers, never in place of them. Please don’t change or stop any medication without talking with your prescriber.
A leading theory is that MdDS involves a mismatch between the inner ear’s two kinds of balance sensors, the otoliths, which sense gravity and straight-line movement, and the semicircular canals, which sense head rotation, along with problems in the brain systems that adapt the reflexes these sensors control. Together, these sensors tell your brain where your head is in space and in relation to gravity.
Researchers believe MdDS involves poor coordination among these sensors and the parts of the cerebellum that normally fine-tune how these reflexes adapt (8). To keep your eyes focused on the world while your head moves, your balance and visual systems must work together precisely. In this theory, the VOR stays stuck in its boat-adapted state, creating the feeling of motion, and readapting the VOR is the goal of treatment.
Research suggests that readapting the VOR is possible. A 2014 study, “Readaptation of the vestibulo-ocular reflex relieves the mal de débarquement syndrome,” tested a treatment based on this idea (5). Participants watched a moving visual pattern, called optokinetic stimulation, while moving their head in a specific way matched to the direction of motion they felt. In this study of 24 people, 17 (70%) had substantial improvement after treatment, and the improvement was still present at a follow-up about four months later. A 2018 study that compared this approach with a sham (placebo) treatment found improvement in about half of participants (9). These are relatively small studies, and more research is needed.
We use these optokinetic and VOR readaptation methods in our care for MdDS, combined with other therapies based on your testing.
Our testing is designed around these systems. Videonystagmography (VNG) records eye movements that reflect how your brainstem and cerebellum are processing inner ear signals, including velocity storage. The video head impulse test (vHIT) measures how well each semicircular canal is working, and CAPS computerized posturography shows how well your brain combines inner ear, visual and body-position information to keep you steady.
Other therapies that have been studied for MdDS include repetitive transcranial magnetic stimulation (rTMS), which uses magnetic pulses to stimulate specific areas of the brain. Small studies have found that rTMS reduced symptoms for some people with MdDS (10). At our clinic, TMS is provided by our psychiatric mental health nurse practitioner, who will evaluate whether it may be appropriate for you.
Virtual reality therapy has also been studied as a way to help people with MdDS (11). We use the Virtualis virtual reality system, which allows us to deliver carefully controlled visual and motion challenges during your therapy. The therapies we recommend are always chosen based on your testing and exam findings.
How the NeuroRescue Program Works
Your NeuroRescue Program begins with your Discovery Day. We start with a detailed history of your condition and your life on a timeline. This helps us understand the factors that may have contributed to where you are now, and identify related conditions that may be making it harder to move forward.
We measure how your visual, vestibular and balance systems are working through computerized analysis of your eye movements, inner ear reflexes and balance under different conditions. Our testing includes videonystagmography and saccadometry to measure several types of eye movements, the video head impulse test to measure how each semicircular canal is working, and CAPS computerized posturography to assess your balance under different sensory conditions. We also use NeuroSensoryMotor Integration testing to evaluate hand-eye coordination and cognition, and Virtualis testing to assess dynamic eye tracking and your perception of vertical in a virtual reality environment.
We combine this with a thorough physical and neurological exam of your sensory, motor, autonomic and cognitive systems. We also review any relevant lab work, imaging and prior testing, and integrate it with our findings.
Together, this helps us understand which parts of your nervous system are working well, which are struggling, and how quickly they tire. We use that information to design your personal NeuroRescue Program, aimed at helping your brain readapt and helping these systems work together. Our testing also helps us decide when to push and when to let you rest.
Our goal is to help your brain let go of the motion it’s been holding on to, so the ground can feel still beneath your feet again.
Your Next Step
Living with MdDS can feel isolating, especially when the people around you can’t see what you’re feeling. You don’t have to keep riding it out alone. To find out if the NeuroRescue Program is right for you, contact one of our patient care coordinators to schedule your Discovery Day.
It’s never too late to take the next step.
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