Mal de Debarquement Syndrome, or MdDS, is a rare and complex syndrome that leaves you feeling like you have sea legs all the time — bobbing, swaying, and losing your balance. Typically when patients come in with this diagnosis they describe it as “I got off a boat, I walked onto dry land, but my legs and brain never feel like I stepped off of the boat”. There are two kinds of MdDS, classic and spontaneous. Classic develops after being in constant passive motion for a long period, and spontaneous MdDS develops without a movement trigger. MdDS is poorly understood, but what we do understand is that it occurs in healthy people who spend long durations with passive motion, such as being on a boat for days at a time, sleeping on a water bed, or being on a long plane flight (1). Those with Mal de Debarquement do not feel true vertiginous spinning, nor do they usually get motion sick. Physical therapy can be helpful for MdDS, but thorough treatment will be multidimensional and combine treatment from many practitioners.
Symptoms of Mal de Debarquement are chronic consist of: (1)
The experience of feeling better when you are in motion is one of the keys to your diagnosis. There are no clinical tests for an MdDS diagnosis, but a thorough history and good clinical skills from your physical therapist will be able to help you toward a diagnosis.
The diagnostic criteria consist of: (2)
Your diagnosis of MdDS is often frustrating and can be anxiety-provoking. Individuals with MdDS are more likely to have pre-existing anxiety and/or depressive disorders (2). Additionally, migraines and headaches are associated with MdDS and generally increase with the onset of MdDS symptoms(2). Treating all of your symptoms, from rocking and swaying to anxiety is going to be vital to the holistic treatment of Mal de Debarquement Syndrome.
Treating Mal de Debarquement Syndrome can be complex and requires significant commitment from both the patient and providers. According to research, patients treated for MdDS found that the most effective therapeutic for their symptoms was a medication, Benzodiazepines. Common Benzodiazepines are Xanax and Valium, they are used to sedate the central nervous system (brain and spinal cord) (2). Additionally, physical therapy and vestibular therapy were found to be somewhat helpful as well. In another study however, they used treatment of the vestibular ocular reflex (VOR) to treat the MdDS symptoms with significant decrease in symptom severity (3). The treatment cited in this article requires a large dome for full visual stimulus, then the patient is seated in a chair and the subject’s head is passively rolled at their rocking frequency while watching the stripes move to the opposite direction of the previously determined affected ear. This treatment was found to be effective immediately after in classic and spontaneous MdDS cases in 78% and 48% of patients respectively (3). In the study’s one-year-follow-up, over 50% of the patients reported that their improvements were lasting (3). A combination of treatments between medications and physical therapy will hopefully treat your Mal de Debarquement Syndrome symptoms.
Physical therapy for Mal de Debarquement syndrome is going to be helpful for balance training, gait instability, and sometimes habituation of your vestibular system through Vestibular Rehabilitation Therapy (VRT). This reflex helps to stabilize your gaze and helps you know where your head is in space. VRT for MDDS is most effective in treating the functional deficits, not necessarily the actual rocking and swaying.
The gold standard for MDDS treatment is the Dai Method (3,4) for visual stimulation with head motion, this is especially helpful in those with classic MdDS. Your physical therapist should work closely with you and your other healthcare providers to assess and provide quality treatment for you specifically. If you have MDDS, this is worth a try as because we can easily access large TV screens or Virtual Reality goggles, this can be reproduced at home with a partner if you’d like to try.
Sources:
(1) National Organization for Rare Diseases. (2020, June 05). Mal de Debarquement. Retrieved August 29, 2020, from https://rarediseases.org/rare-diseases/mal-de-debarquement/
(2) Cha, Y., Cui, Y., & Baloh, R. (2018, May 7). Comprehensive Clinical Profile of Mal De Debarquement Syndrome. Retrieved August 29, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5950831/
(3) Dai, M., Cohen, B., Cho, C., Shin, S., & Yakushin, S. (2017, May 5). Treatment of the Mal de Debarquement Syndrome: A 1-Year Follow-up. Retrieved August 29, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5418223/
(4) Dai, M., Cohen, B., Smouha, E., & Cho, C. (2014, June 26). Readaptation of the Vestibulo-Ocular Reflex Relieves the Mal De Debarquement Syndrome. Retrieved August 29, 2020, from https://www.frontiersin.org/articles/10.3389/fneur.2014.00124/full
(5) Farrell, L., DPT. (2019, July). Mal de Debarquement Fact Sheet. Retrieved August 29, 2020, from https://www.neuropt.org/docs/default-source/vsig-english-pt-fact-sheets/mal-de-debarquementc0a035a5390366a68a96ff00001fc240.pdf?sfvrsn=7ca35343_0