Mal de débarquement syndrome (MdDS), or sickness of disembarkation, is a rare neurological and vestibular (balance and spatial orientation system in the inner ear) disorder. It is characterized by a persistent sensation of rocking, swaying, or bobbing, usually following exposure to passive motion such as a boat ride, cruise, flight, or long car trip. Unlike typical motion sickness, MdDS symptoms begin after the motion stops, and is likely linked to the brain’s ability to reorient itself after a period of extended motion. Episodes usually only last 24 hours, but can last for weeks, months, or even years, causing significant distress and impairing balance, focus, and daily functioning. In some cases, MdDS appears spontaneously, without a clear motion trigger, or as a result of significant bodily changes such as surgery or childbirth.
Mal de débarquement syndrome (MdDS), or sickness of disembarkation, is a rare neurological and vestibular (balance and spatial orientation system in the inner ear) disorder. It is characterized by a persistent sensation of rocking, swaying, or bobbing, usually following exposure to passive motion such as a boat ride, cruise, flight, or long car trip. Unlike typical motion sickness, MdDS symptoms begin after the motion stops, and is likely linked to the brain’s ability to reorient itself after a period of extended motion. Episodes usually only last 24 hours, but can last for weeks, months, or even years, causing significant distress and impairing balance, focus, and daily functioning. In some cases, MdDS appears spontaneously, without a clear motion trigger, or as a result of significant bodily changes such as surgery or childbirth.
MdDS is considered rare, though its exact prevalence is unknown due to underdiagnosis. There are an estimated 150,000 cases of MdDS in the US. It is seen far more often in adult women, with 85% of cases occurring in people born genetically female between the ages 30 and 60. The motion-triggered form is more common, while the spontaneous form is less frequent but increasingly recognized. It is also more common to develop in people who experience migraines, of which the exact cause is also not completely understood.
| Name | Abbreviation |
|---|---|
| Disembarkment syndrome | |
| Persistent Mal de Mer | |
| Rocking Dizziness Syndrome |
The exact cause of MdDS is poorly understood. The dominant theory suggests a maladaptation of the brain’s vestibulo-ocular networks that normally help the body adjust to continuous movement. The vestibulo-ocular reflex (VOR) is a rapid eye movement made automatically to counteract head movement, usually when walking and especially during motion in a car, boat, etc. After prolonged exposure to motion, the brain may fail to “recalibrate” once the motion stops (known as proprioception). Functional neuroimaging studies of people with MdDS show abnormal activity in regions involved in balance, motion perception, and sensory integration, particularly the entorhinal cortex and vestibular pathways. Hormonal factors may play a role, as women are disproportionately affected. Stress or migraines can also increase susceptibility.
The hallmark symptom of MdDS is a persistent rocking, swaying, or bobbing sensation (“like being on a boat”) that:
Worsens when still, such as sitting or lying down
Improves with passive motion, such as being in a car
May be triggered by other visual stimuli, such as screens
Additional symptoms may include:
Unsteadiness or imbalance
Difficulty concentrating, “brain fog,” or cognitive slowing
Visual motion sensitivity
Head pressure or headaches (sometimes associated with migraine)
Fatigue or sleep disturbances
Anxiety or depression, often secondary to chronic symptoms
Symptoms usually lessen somewhat when the individual is in motion, which is a key distinguishing feature. It is also not accompanied by tinnitus or vomiting, key factors of other vestibular disorders.
MdDS is diagnosed clinically, as there is no definitive laboratory or imaging test. Diagnosis is typically made by a neurologist or vestibular specialist and requires ruling out other causes of dizziness and balance problems. A characteristic history of symptoms starting after disembarking from passive motion strongly supports the diagnosis.
While no test confirms MdDS, diagnostic evaluations help exclude other conditions:
Neurological examination to assess balance and coordination
Videonystagmography (VNG) or electronystagmography (ENG) to evaluate vestibular function
MRI of the brain to rule out structural abnormalities
Audiologic testing to exclude inner ear disorders
Vestibular testing (such as rotary chair testing) may be normal or show nonspecific findings
A detailed symptom history remains the most important diagnostic tool. In 2020, an international organization called the Bárány Society published diagnostic criteria for MdDS in the International Classification of Vestibular Disorders (ICVD) to help distinguish it from other vestibular disorders and increase ease of diagnosis.
There is no universally effective treatment, but several approaches may help reduce symptoms:
Vestibular rehabilitation therapy (VRT): Results vary; more helpful for motion intolerance than for MdDS itself.
Optokinetic or visual-vestibular therapy: A specialized treatment retraining the brain’s motion-perception networks; promising results in some patients.
Medications:
Benzodiazepines (e.g., clonazepam) for short-term symptom relief
SSRIs or SNRIs for associated anxiety or depression
Migraine-directed treatments if migraine features are present
Neuromodulation techniques:
Repetitive transcranial magnetic stimulation (rTMS)
Transcranial direct-current stimulation (tDCS)
These are experimental but may benefit select patients.
Lifestyle management:
Stress reduction, sleep optimization, and avoiding triggers
Gentle physical activity, such as walking or swimming
A current clinical study for DevRobust treatment of MdDS is underway at Mount Sinai.
Prognosis varies widely. Some individuals recover within weeks or months, especially with early intervention. Others experience chronic, persistent symptoms lasting years. Symptoms may fluctuate and may recur after new exposure to passive motion. While MdDS does not cause physical degeneration, its impact on quality of life can be significant due to its effects on concentration, mobility, and emotional well-being. Appropriate therapy, psychological support, and careful symptom management can greatly improve daily functioning for many patients.
Check out this article, “What My Family and Friends Want You to Know About Mal de Debarquement Syndrome”, by Lindsey Gilbert, a woman living with MDD. This article explores Lindsay’s experience and includes observations from her friends and family.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Created by shannon.ashoori | Last updated 1 Jul 2020, 01:01 AM
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