Passive Motion Can Trigger Mal de Débarquement Syndrome (MdDS)
Mal de Débarquement means “Disembarkation Sickness.” Patients report unrelenting motion sensations in the absence of movement. They are still on shifting ground days and maybe weeks after passive motion events, such as sea cruises, lengthy flights, bus trips or even Carnival thrill rides. Trouble is that passive motion can trigger Mal de Débarquement (MdDS). One might say that once the ocean cruise ends, the land cruise begins.
MdDS-related false movement perception starts immediately after, or shortly after prolonged exposures. The body itself does not move, but it is being moved passively in all sorts of directions. MdDS symptoms include feelings of continuous bobbing up and down, swaying, unsteadiness, being on shifting ground etc. “Spinning or whirling” vertigo and nausea are not classic symptoms. Traditional motion sickness pills do not help, which may be a clue for a diagnostician.
A brain reset glitch?
While it may sound so much better in French, Mal de Débarquement refers to a rather nasty central vestibular (balance) disorder that can linger for months and longer. So far, scientists agree that MdDS-related false motion sensations come from the brain. It’s a central issue rather than an inner-ear problem. Challenged by passive motion, the brain adapts to rapidly changing motion patterns. Along the way, it seems to pick up the motion rhythms and gets stuck in its “adaptation loop.”
The trouble with MdDS begins once the motion stops. The brain fails to recognize that the passive movement is over. Instead of hitting the reset button to “normal,” it keeps adjusting for movements that no longer exist, which leaves people with false or phantom motion sensations. How this actually happens and which parts of the brain are involved are ongoing research topics.
That said, temporary unsteadiness after prolonged passive motion experiences is common. Normally, symptoms fade away in less than 48 hours as the brain auto-corrects. However, for all too many the rocking and swaying go on and on. A diagnosis of Persistent MdDS is considered if symptoms continue for 30 days or more.
A “rare” condition?
With increased travel, cruising and thrill seeking, one might expect a rise in MdDS cases. Yet, it is still considered a “rare” condition. Might this be due to the fact that many health providers are not familiar with the syndrome or that passive motion can trigger Mal de Débarquement? And so, it is a diagnosis that does not immediately come to mind when people report false motion symptoms.
Even after multiple doctor and therapy consults, many patients remain undiagnosed or even misdiagnosed. Frustrated by not getting answers, they may try to self-medicate, which is a different issue altogether. Many are never referred to a specialist who could make sense of their case, such as Neuro-otologists, vestibular therapists or ENT doctors who specialize in balance issues related to both the inner ear and the brain.
Difficult diagnosis
In general, vestibular disorders are hard to diagnose. MdDS is no different. Although there are diagnostic criteria, there are no definitive tests for MdDS. The reason why the brain “gets stuck” is still murky at best. Also, MdDS has non-motion triggered sub-types that also produce brain-related false motion. The best known is probably Persistent Postural Perceptual Dizziness or PPPD. MdDS and PPPD are considered distinct conditions. Differences that may seem subtle become significant during diagnosis. Then, more confusion is added by overlapping symptoms and aggravating conditions, such as vestibular migraines, periods of stress and anxiety and more.
How patients can help
An MdDS diagnosis is mostly made by ruling out or excluding “what it is not.” And so, vestibular specialists rely a lot on patients’ descriptions of events and symptoms. They listen and watch for diagnostic clues. By being reliable historians, patients can speed up the often-frustrating lengthy process. Be concise. Think about the following:
- Timeline: When and how did the problems start?
- Related events? Passive motion? Head injury? Fall? Intense stress? Migraine? etc.
- Is the false motion continuous or intermittent with better and worse days?
- What does “dizzy” mean to you? Unsteady, swaying, bobbing, pulling sensation…
- What makes it better or worse? Sitting still? Moving around? People with MdDS often report relief driving a car or riding a bus. When the ride is over, symptoms return – and may be worse
- Which doctors or therapists have been consulted? Any diagnosis? Which treatments or medications were tried? Did anything help? Do motion sickness pills help or not?
- Which tests have been done? Blood tests, MRI, CT scan, balance testing? Results?
MdDS can be managed. Once a diagnosis has been made, a treatment plan is prepared. This may include Vestibular Rehabilitation Therapy (VRT), Cognitive Behavioral Therapy CBT), gaze stabilization exercises, appropriate medications as well as treatments for aggravating conditions. Trials for newer therapies are ongoing.
Research and hopeful news
And so, yes, passive motion can trigger Mal de Débarquement. This is still an underrated balance mystery with a negative impact on quality of life. It carries serious physical, emotional and financial burdens. Fall risks, anxiety, depression and frustration over the lack of answers add to the challenge.
The good news is that the condition is getting research attention. Scientists are tracking the actions of the brain during passive motion. A better understanding of the condition and MdDS diagnostic criteria speed up the process and reduce the chances for misdiagnosis. Trials and studies are done to find improved treatment options for recalibrating the brain’s balance gyroscope. The goal is to remind the brain that passive motion is over and that it must reset to normal – and it will do so!