With the recent return of the two astronauts who were stranded on the International Space Station for nine months, much of the media coverage has focused on the pair’s physical adjustment to Earth’s gravity. Space travelers often experience problems with their vestibular system, a sensory system within the ear and brain that helps a person maintain balance and orientation to surroundings. Problems related to the vestibular system can occur with any of us, however. Consider a time when you experienced motion sickness that did not end upon stepping off a boat, airplane, train or out of a car. For some people, these symptoms persist chronically. Mal de debarquement syndrome, abbreviated MdDS, is French for “illness of disembarkment” and is a unique illness affecting people of any age.
Stephaine Sams, a certified mental health clinical specialist based in Mount Pleasant, began to experience symptoms of a vestibular disorder in 2015. “I noticed I was experiencing ongoing motion sickness while riding in a car,” said Sams. “Then, while carpooling the kids, I had a sensation of movement even when stopped at a red light and kept slamming the brakes. At times, I also had no idea where I was, despite traveling on my usual route.”
She initially dismissed the symptoms but eventually developed other problems such as dizziness and headaches that lasted for days. Then one day her memory was affected. “I recall cleaning the living room and could not tell that a red pillow matched the red couch.” Stephanie continued “I developed lots of anxiety, including panic attacks, and thought I had a brain tumor or something.” Fortunately for Sams, she happened to complain about the problems while having dinner with a friend, who is a physical therapist specializing in vestibular conditions. Her friend referred her to Dr. Habib Rizk, an otolaryngologist, commonly known as an ear, nose and throat specialist, with the Medical University of South Carolina. After extensive workups, including CT scans and MRIs, Stephanie was diagnosed with mal de debarquement syndrome.
Unlike short-term vestibular issues commonly caused by inner ear abnormalities, people with MdDS have an issue inside the brain. Sams learned that many patients often experience intense dizziness, brain fog and anxiety in crowds, due perhaps to sensory overload, or in supermarkets, owing to bending down to a lower shelf, then stretching to reach items on an upper shelf. Some patients stumble and have difficulty walking, appearing drunk. Other challenging situations for people diagnosed with MdDS include lying on waterbeds, playing virtual reality games and using treadmills or elliptical machines.
Unfortunately, there is no specific cure for MdDS, and one of the frustrating mysteries of the illness is not knowing how long the symptoms might last. Treatment is directed toward avoiding situations that trigger symptoms and then managing symptoms as they appear. One successful mode of therapy for Sams has been the use of a NeuroCom Balance Master, a cutting-edge technology that treats balance disorders. “The NeuroCom taught my brain to figure out spatial awareness by putting me in situations in which I would become dizzy,” recalled Sams, who also pointed out that her treatments assisted her in situations such as misjudging steps. “Still, I am affected by the weather of all things. When the barometric pressure drops, I drop,” she said, only half-joking.
ese days, Sams can perform her activities of daily life, although she cautions that she is not cured. She has coupled her diagnosis of MdDS with her counseling practice to serve others experiencing similar conditions. She is the founder of a local vestibular support group called, of all things, the Charleston Dizzy Group. The group is registered with the Vestibular Disorders Association, a national advocacy organization for people afflicted with such issues and also provides information for health care professionals treating these patients. Sams was proud to announce that her ENT specialist, Dr. Rizk, is the current president of the national association. The local support group meets in-person every other month because, according to Sams, virtual meetings can be challenging for people experiencing MdDS. The group also maintains a Facebook page.
While most people may have never heard of mal de debarquement syndrome, those who experience the signs and symptoms of this condition should not simply ignore them or tolerate them. Instead, they should consult with their health care provider and determine if treatment options, or referral to a specialist, might be warranted.
By D.J. Thatcher, RN, NRP
