Mal de Débarquement Syndrome – Update

In November, 2019, I posted about a malady that I have dealt with for twenty years called Mal de Debarquement Syndrome or MDDS. When I first recognized the symptoms, there wasn’t much information widely available about MDDS. There was plenty of published research about travel sickness, post-travel imbalance, jet lag, dizziness, vertigo, and migraines, but it failed to address the specific facets of this strange phenomenon. It wasn’t until 2015 that I even discovered there was a name for it.

In 2021, I experienced my first spontaneous episode of MDDS, meaning that it was not precipitated by air or sea travel. Instead of lasting a couple of weeks like all my other previous bouts, this time it went on for four months. My primary care physician suggested a diuretic, but I wasn’t convinced that an excess of salt and water in my body was the real problem. I scheduled a videonystagmography (VNG) test but wasn’t able to get in until after my symptoms began to subside. The test was negative. Another spontaneous episode occurred in mid-April of 2023 and lasted off and on through mid-July. My next step is to get a referral to a neurologist, and now I have a book to prepare me for my appointment with such a physician.

One of the leading specialists in studying and treating MDDS is Shin C. Beh, M.D., who practices out of his own facility, the Beh Center, in Frisco, Texas. Dr. Beh wrote a book that came out in early 2023 titled Disembark: Overcoming Mal de Debarquement Syndrome. I was lucky enough to discover it because someone posted an announcement of it on a social media MDDS support group page. This is a self published book, probably even a print-on-demand title, but future editions should be picked up by a major press because it really is well written and so informative.

Disembark by Shin C. Beh
Disembark by Shin C. Beh

Dr. Beh covers just about every aspect of MDDS that I can imagine, given how the research into this syndrome is young and evolving rapidly. He covers the symptoms and diagnosis of MDDS, along with several hypotheses of the underlying causes. I’m sure in the coming years the author will revise this information, and other authors likely will cover new ground as the research expands. The bulk of this book covers the various approaches to treatment that he and other practitioners have developed to help sufferers of MDDS deal with their symptoms. He makes it clear there is no cure, but he offers treatments ranging from natural remedies to an array of chemicals, most of which are formulated to treat other vestibular disorders, depression, anxiety, seizures, and migraines.

Vestibular migraines are actually Dr. Beh’s speciality, so he arrives at the study of MDDS through that gateway. His first book was about vestibular migraines. There are some obvious similarities between the two maladies, so the treatments overlap too. In addition to medications, he also suggests lifestyle pathways to diminish symptoms, including what to avoid and how to actively fight the symptoms through diet, exercise, sleep patterns, prayer/meditation, work habits, and environment control.

I made copious notes in the margins of my copy and intend to keep it as the first, I hope, in a collection of reference guides to MDDS. I also sent an email in gratitude for the book and the supporting research to the Beh Center. I received an answer thanking me for my message within a few hours, which was impressive. Again, there is no cure for MDDS, but this book goes a long way toward helping sufferers deal with this debilitating syndrome and giving hope to those who must live with it.

Mal de Débarquement Syndrome

When my sons were in elementary and middle school, their mother and I took them on a Disney cruise, along with a group of other families we were close to from our church. We set sail from a port on the east coast of Florida, spent several days out in the Caribbean, made a few land calls, then returned to shore and headed back home. I resisted taking any seasickness medication when we boarded, thinking I could get adjusted to being on the ship; however, after 24 hours I caved and wore a patch that most everyone else was using to absorb medication into my system. This was our first cruise, and for me, the last. For about 2-3 weeks following our wonderful vacation at sea, I had a terrible time getting back my “land legs,” a phrase that refers to the ability to adjust one’s sense of balance and motion to walking on land after a sea journey or flight.

It was hard to describe the sensation when I finally went to my family doctor seeking a remedy. My symptoms didn’t match those described by people suffering with vertigo, a horrible sense of spinning that my poor mother suffered with for years before her death, resulting in some pretty serious falls and injuries. I never felt as if I might fall, nor was I dealing with nausea. It was more like a subtle but constant feeling in my head that I was gently rocking forward and backward, up and down, simultaneously – almost matching the feeling I have always had when riding in a speedy elevator. The side effects included a dull headache and difficulty concentrating, especially while staring at a computer monitor for hours at a time, which my job often required. Oddly enough, the sensations abated and even temporarily vanished while I was driving or riding in a car.

My doctor told me the symptoms would likely fade away soon, but he prescribed medicine to combat the dizziness. Under certain conditions, I can get drowsy taking ibuprofen. Give me an antihistamine, decongestant, cough syrup, or muscle relaxer, and I will almost be comatose within the hour. I could not function during the day while taking the medicine my doctor prescribed, and I didn’t have any problem sleeping at night. So, I pushed through until, slowly and gradually, the symptoms finally disappeared. No one on that cruise got a better value than I did – they were at sea for four nights. I was on that damned boat for over three weeks!

As a result of my unpleasant experience, I decided to forgo cruises in the future and stick with other modes of transportation – cars, trains, and planes. In 2009, I was invited to give a presentation on Flannery O’Connor at a conference in Rome, Italy. My wife and I had been married one year and were lucky enough to spend our first anniversary in the Eternal City. (After all, they said “Take her some place nice.”) I expected to deal with jetlag, given the six-hour difference in time zones between our home in Georgia and Italy. However, my jetlag soon morphed into the post-cruise symptoms I remember all too well from the Disney excursion. Not good news.

Since 2009, I have dealt with this issue multiple times after flying, but not on every occasion and not with the same severity. For instance, I had a miserable few days after landing in Salt Lake City in the summer of 2015, but I had little or no problems following our flight to and from Paris in 2016. Late in 2015 I began taking a regimen of Dramamine, beginning three nights before my flight and continuing until three nights after my return home. I combined the medicine with the use of rubber ear plugs designed to reduce pressure changes at high altitudes. This approach seemed to work for a while, but then a few times it didn’t. In a state of increased desperation, I did what all savvy Americans do when faced with a medical challenge. I consulted my close friend and physician, Dr. Google. Through considerable determination and more-than-usual side paths, my Internet searches ultimately led me to a malady that I had never of before.

Most websites and articles I uncovered in 2015 were describing something labeled Disembarkment Syndrome, although it is now most often identified by the French term, Mal de Débarquement Syndrome, translated “illness of disembarkation.” Fortunately, my research led me to an occupational therapist named Gaye Cronin working out of an ear clinic in Atlanta less than two hours from our home in north Georgia. She had considerable experience in vestibular physical therapy and was familiar with cases of Mal de Débarquement Syndrome. She ran me through a battery of tests, checking my eyes, ears, balance, and coordination. In addition to a prescription for meds to take before and after flying, she also gave me a series exercises designed to train my eyes and ears to adjust to the conditions of flying.

I can’t say that Cronin’s solution has eliminated my symptoms every time I fly, but the situation has improved considerably. I am also more aware of what will trigger problems, such as reading or looking at mobile devices or getting up and walking around during flight. My best chance of avoiding the syndrome’s ill effects is to stay as still as possible during flight with my head facing straight. As annoying as this problem is, it hasn’t ever reached the point where I am unwilling to fly, especially considering that I only do so a few times a year. I probably couldn’t accept a job that required me to fly regularly, but my wife and I like to travel domestically and internationally. I am willing to endure the occasional week or two of post-travel discomfort in order to keep traveling.

I am quite fortunate in that my discomfort always abates after one or two weeks. Sadly, there are people whose symptoms stay with them for weeks, months, and even years. As of now, there is no known cure for this malady; however, there is ongoing research and plenty of information available about Mal de Débarquement Syndrome. I am pleased that there is a Foundation that promotes international awareness of and research on the syndrome. I encourage anyone who suffers from this problem to check out their website.