An European cruise, her first, has turned into a long and painful journey for Johanne Roy. (Photo: Johanne Roy)
What was supposed to be a celebratory 55th birthday cruise for Johanne Roy and her husband turned out to be memorable for all the wrong reasons. “On the third day [at sea] I started being sick,” Roy, a clinical nurse specialist and mother of four, tells Yahoo Travel about her European cruise last October. “I started feeling very bad, very weak, and I didn’t sleep well. I was bobbing, swaying, having imbalance, having problems walking. And I had difficulty concentrating. My mind was foggy.”
The problem persisted even after Roy returned home to Montreal. Now, seven months after the cruise, the bobbing and swaying feeling is still with her and showing no signs of going away.
“The cruise was fantastic,” Roy says. “My health — not that fantastic.“
For Amanda Wright, a graphic designer in Lafayette, Indiana, the life-changing trip was a 14-hour flight to China in October of 2013. When her trip ended, she also noticed some troubling symptoms. "As soon as I stopped moving, I had this really weird sensation” Wright tells Yahoo Travel. “Initially I felt like someone was sitting on my shoulders and trying to push me through the floor. And then I felt like someone was standing behind me and trying to push me forward.”
Those symptoms persisted for two months after that trip before receding. But following a flight to New Jersey for a wedding last July, Wright’s symptoms returned and remain to this day. “I feel like I’m walking on a trampoline,” she says.
A 14-hour flight to China in 2013 preceded Amanda Wright’s first bout with an illness with which she still struggles. (Photo: Amanda Wright)
Most travelers accept that the occasional ailment — be it seasickness, airsickness, carsickness — is just an unpleasant but temporary downside of travel. But for travelers like Roy and Wright, who suffer from a rare and mysterious condition known as “mal de debarquement syndrome” (also known as MdDS or “disembarkment syndrome”), symptoms triggered by a boat or plane ride can last for months, even years.
Doctors are baffled by disembarkment syndrome; the relative few who correctly diagnose it don’t quite know how to treat it. So its victims are left to suffer a debilitating vacation hangover that upends not only their sense of balance, but also their lives.
What is “mal de debarquement syndrome”?
MdDS is not motion sickness, a completely separate and temporary ailment. MdDS is a constant feeling of swaying, bobbing and rocking usually triggered by cruises but also by long flights and, in even rarer cases, car or bus rides. For an unknown reason, the vast majority of its victims are adult women.
One of the many mysterious of MDdS: its victims usually are women (Photo: iStock)
“Because this is a rare disease, most people and medical professionals have never heard of it,” Dr. Mingjia Dai, Assistant Professor of Neurology at Mount Sinai’s Icahn School of Medicine, tells Yahoo Travel. Dr. Dai says the syndrome has been linked to a host of debilitating symptoms such as disorientation, brain fog, fuzzy vision, fatigue, and depression. “These symptoms can last anywhere from minutes to 10 to 20 years,” he says.
Living a life off-balance
After several months of failed treatments, Roy’s MdDS, and the resultant swaying and bobbing sensations, have turned her already-stressful hospital job into a form of torture. “There are hallways and lights and people running,” she says. “When I am in a group discussion at work, I get dizzied by the sheer speed and intensity of the conversations.” As a result, Roy can’t work more than one day a week. “My professional persona no longer exists,” she says.
Roy says her illness has robbed her of her independence. (Photo: Johanne Roy/Facebook)
Roy’s inability to drive, handle crowds and enjoy the occasional glass of wine have robbed her of her personal persona as well. “The worst part, for me, is losing much of my independence,” she says. “I now have to rely on others and ask for help. I feel dependent; I particularly loathe that part.”
Amanda Wright sees a small bright side to her MdDS. She says: “Luckily my symptoms aren’t as high as some other people I’ve spoken to.” She says on a “discomfort scale” of one to 10, her worst days rate about a six. “If you try to think about other things and not focus so much on it you can push through it,” she says. “So that’s just kind of what I’ve been doing.”
Still, Wright admits her bad days are a struggle. “I’m a web designer, so on my days that my symptoms are high, it’s really hard for me to focus and concentrate and sit in front of a computer screen,” she says. “I have a really hard time walking through dimly lit rooms. It’s like my spatial awareness is completely thrown off.”
Amanda Wright talked about her illness in a video in support of Give Rare Day (Video: Amanda Wright/YouTube)
And while friends and family understand Wright’s plight, she has a hard time explaining it to others. "Honestly, that’s one of the hardest things when it comes to this because people do have a hard time getting it,” she says. “I’ve learned not to talk about it much because a lot of people say, ‘Oh, I’ve had vertigo before’ or ‘I bet it’s the crystals in your ear.’ It’s frustrating because you know that really no one understands it. But at the same time you can’t really expect them to.”
Could a cure be on the way?
Roy and Wright have their own ways of alleviating their MdDS symptoms. Wright finds that exercise helps. Roy paints. “Doing art gives me the chance to take control over my current condition,” Roy says. (You can view her artwork on her website.)
Strangely enough for sufferers of a disease often triggered by vehicular journeys, many MdDS patients, Roy and Wright included, say riding in cars also provides temporary relief.
WATCH: Johanne’s art exhibit
Roy says, “Doing art gives me the chance to take control of my condition.” (Video: Johanne Roy/YouTube)
But as far as medicinal solutions go, those have been lacking. Wright and Roy both have been prescribed antidepressants and other medications to help deal with the disease. The medications were futile, at best. “I had some weird side effects,” says Wright. “It was a nightmare to wean of it.”
“Antidepressants are not effective,” Dr. Bernard Cohen, a Professor of Neurology at the Icahn School of Medicine at Mount Sinai, tells Yahoo Travel. He thinks he may have helped find something that is effective. Dr. Cohen and his Mount Sinai colleague Dr. Dai believe their research team has pioneered a treatment for MdDS that requires no medication.
The key to understanding, and curing, MdDS may lie in the inner ear. (Photo: iStock)
Their Mount Sinai study suggests the key to a cure for MdDS lies in the vestibule-ocular reflex (VOR), a mechanism in the inner ear that maintains balance and stabilizes the eyes during head movements. Sufferers from MdDS, Dr. Cohen explains, might have a malfunction in this particular reflex — a glitch that may cause that incessant rocking sensation.
“In almost all subjects, the rocking is about one oscillation every five seconds,” Dr. Cohen explains. So the Mount Sinai team developed a treatment that effectively re-wires a patient’s VOR by slowly rolling his or her head from side-to-side at that same frequency, one oscillation per five seconds, while also moving the patient’s visual surroundings.
Researchers at Mount Sinai’s Icahn School of Medicine in New York think they may have found a way to treat MdDS. (Photo: Wikimedia Commons)
The results are promising. Mount Sinai says in the initial study, 70 percent of the patients “reported either a complete or substantial recovery for a mean follow-up of approximately one year after treatment” (for most of the patients, just one week of three to five treatments a day were enough to produce recovery). “That’s the first time anybody did anything like that,” says Dr. Cohen, adding that his team so far has treated more than 100 patients with another 175 lined up through October.
Living with MdDS
Until a cure becomes widespread, MdDS sufferers have to muddle through as best they can. Needless to say, spontaneous travel adventures are out of the question. At least, they usually are; Wright says as long as her symptoms persist, she’d chance getting on another airplane if she had to (“I don’t think it would make anything any worse,” she says ruefully).
Roy doesn’t have any cruises planned but she has thrown herself into her art. “This illness cannot, and will not take control of my life,” says Roy, who’s now a creative art therapist. “I accept that that journey, albeit difficult, will be quite interesting and instructive.”
But while many MdDS sufferers do try to find some level of acceptance of their fate, that doesn’t mean they’re doing so passively. “I’m still looking for answers.” says Wright. “I’m not willing to live with it.”
Check out our original adventure travel series A Broad Abroad.