Mal de Debarquement Syndrome, or MDDS, is the sensation that you are still in passive motion, even when you have stopped the passive motion. Imagine you were on a plane or a boat, and that you step off. You momentarily may have sea legs, you may feel imbalanced or like you are going to lose your balance. Maybe you feel like you’re internally still swaying to the rhythm of the ocean. This is normal, there’s nothing to be concerned about here, this is not Mal de Debarquement Syndrome.
Mal de Debarquement Syndrome is when you chronically feel you’re in chronic passive motion after you disembark from a long trip where passive motion is involved. Typically extended boat, plane, or car rides.
MDDS can be spontaneous, but this is not as common. When you have non-motion-triggered, or spontaneous, MDDS, it typically comes from a stressful event or a large hormonal change. In a study, they found approximately 44% of people had symptoms onset in perimenopause or menopause (1). It’s important to consider your life stage when the diagnosis is being made.
MDDS symptoms are very specific, but they can also mock symptoms of vestibular migraine. Some people with vestibular migraine also feel as though they have MDDS, but that is frequently an incorrect diagnosis. MDDS symptoms are constant feeling of imbalance, rocking or swaying, feeling like you’re walking on an uneven surface. These are similar to vestibular migraine symptoms. BUT, MDDS always gets better when you’re in passive motion. People with MDDS very rarely have motion sensitivity or get car sick. Typically, the best part of their day is when they’re driving, on a boat, train, or plane.
- Cognitive slowing
- Chronic internal motion
- Hypersensitivity to physical stimuli
If these symptoms are spontaneous, they can actually be caused by hormonal changes or stress. These symptoms, again, get better with passive motion. This is different than chronic subjective dizziness, which is often confused with MDDS because chronic subjective dizziness gets worse with motion, while MDDS is better when in motion. Be sure to consider this when you believe you may have MDDS.
MDDS can be treated in two ways. The gold standard for MDDS treatment is the Dai Protocol (2). This protocol treats MDDS with optokinetic stripes and passive head motion. In short, the MDDS Treatment discovered by Dai plays stripes in >90% o your vision, and someone moves your head in a right, left, center passive motion at approximately 12 Beats Per Minute. The direction of the stripes is determined by the opposite of the direction you feel you are being pulled, or by where you end up on the Fukada Stepping Test. This is repeated for 1-8 minutes, 1-8 times a day, for 5 days with a 30-minute interval in between. inn 17/24 patients, there was an immediate 75% improvement in symptoms. And, when looking back at the study they found that there may not have been all people with true MDDS – some may have had an inaccurate diagnosis and was likely why they did not see immediate improvement.
Physical Therapy for MDDS Treatment treats only the functional deficits. It can be done before or after the Dai Protocol is attempted. And these functional deficits should be focused on especially if walking, balancing, or gaze stability is difficult for you. Vestibular Rehabilitation Therapy is not done to completely rid you of your MDDS symptoms or rocking and swaying, but instead to improve your ability to function throughout your life, even if you feel you’re rocking and swaying.
The diagnostic criteria for an MDDS Diagnosis are now clear, and stated below (1).
- Clinical history of oscillating vertigo
- Temporary improvement with re-exposure to passive motion
- The symptoms began within 48-hours of disembarking a trip from chronic passive motion (boat trip, plane ride, long duration road trip)
Remember, you must feel BETTER in motion, not worse, to receive a diagnosis. If you are in passive motion and feel worse, you are more likely to have chronic subjective dizziness, PPPD, or another vestibular dysfunction.
How Long Does Mal de Debarquement Syndrome Last?
MDDS lasts for an indefinite amount of time, especially when untreated. It is considered chronic if the symptoms do not disappear for more than 6 months. For some people, MDDS can last for the rest of their lives, and for others, it disappears as quickly and spontaneously as it appeared, especially if it had a spontaneous onset. If your MDDS symptoms ever do decrease or go away, it’s recommended to avoid the original stimulus that brought it on as much as possible. I know that this is easier said than done, as you may have gotten MDDS by being in a car and you probably still need to drive. In this case, I do recommend driving and going about your activities, do not practice avoidant behaviors, but do try to get out of the car and walk around, taking frequent breaks, if you’re on a longer trip.
How Do I Know if my Symptoms are MDDS or Vestibular Migraine?
This can be tough, but there are a few ways that I know whether it’s VM or MDDS as a clinician. You should always be asking your doctor/healthcare team for their advice, but here are my best tips to help you out.
- Do you have a history of migraine, or does migraine run in your family?
- Are you light sensitive, sound sensitive, or movement sensitive?
- Do your symptoms get worse with movement or when you’re in the car?
- Do you have specific attacks where symptoms tend to increase?
- Do you have chronic internal rocking that began after long-duration passive motion (plane, train, boat, etc)?
- Do your symptoms get better when you get in the car and go for a drive?
- Do you resonate with the term land-sick?
If you answered yes to questions 1-4, Vestibular Migraine is more likely than MDDS. If questions 5-7 sound more like you, MDDS is more likely. Remember that this is not medical advice, and you should always consult your doctor!
(1) 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/
(2) Dai M, Cohen B, Cho C, Shin S, Yakushin SB. Treatment of the Mal de Debarquement Syndrome: A 1-Year Follow-up. Front Neurol. 2017 May 5;8:175. doi: 10.3389/fneur.2017.00175. PMID: 28529496; PMCID: PMC5418223.
4 thoughts on “Management of Mal de Debarquement Syndrome”
I was diagnosed with VM and MdDs. Can you have both? I’m better in a car but I take ativan three to four times a day. So I don’t know if that’s why I am better or not.
Hello! You can absolutely have both, but it’s important to distinguish which is happening when. Group Fit and Vestibular Rehabilitation Therapy can both help you to determine which is which and help you to treat the root of the issue.
Amber, my daughter just msgd me thinking she may have this and has an ENT doctors appt in a week. Was Ativan prescribed by your doctor for this MDDS?
Hi! happy to hear your daughter has a diagnosis. Everyone’s treatment plan will look different 🙂