A rocky return to solid ground

Jane Roth’s five-day cruise last August from New York to Canada featured good food, stage shows, gambling and decent weather. She called it “a normal cruise,” though she discovered that she wasn’t crazy about cruising. She was glad when it ended -- and not at all glad when part of the cruise lingered on.

For six months after the voyage, Roth felt as if she were still rocking on the water. “Sometimes I had the slight sensation that I was going to fall,” said the 56-year-old West Hartford, Conn., resident. “That was not a good time for me.”

Roth fell victim to a rare and largely mysterious disorder called mal de debarquement syndrome (MdDS), or simply “mal de debarquement.”

The French phrase, which translates as “debarkation sickness,” describes the common sensation that sailors and ocean passengers have when a trip ends and they step off the boat. Once on terra firma, they continue to feel the rocking of the ocean for a few hours. But a fraction of long-distance ship, train or plane passengers essentially keep their “sea legs” on land for months or even years.

These people continue to feel a dizzying rocking or bobbing sensation, especially when they are sitting or lying still. (Roth felt the rocky sensation when she was walking, which is somewhat atypical.) They find it difficult to concentrate. Some patients may physically rock their bodies when they’re sitting still, and many feel better in a moving car.

“It can be a life-changing problem,” said Dr. Ronald Tusa, a professor of neurology and otolaryngology at Emory University School of Medicine in Atlanta and director of its Dizziness and Balance Center. Tusa is one of the few experts on MdDS.

Deb Russo, 47, of Longmeadow, Mass., returned from a one-week trip to Aruba in April 2004 and went to bed feeling fine. When she awoke the next morning to go for a walk, she felt as if “the street was coming up to hit my face.” Since then, she has suffered from a rocking sensation that is strongest when she is most still. It has disrupted her sleep, leaving her unable to work for most of the last year as a math and technology specialist at a school in Springfield. She doesn’t know what triggered the syndrome, whether it was the flight to or from Aruba or the two-hour catamaran trip she took while there. She only feels normal when she’s driving the car, she said.

There are no reliable figures on the number of people affected by the problem. Tusa said most of his patients were women between the ages of 30 and 60 and tended to be hard-driving, type-A personalities. A 1996 questionnaire distributed in a national newsletter yielded 27 patients, all middle-aged women. Men get the syndrome too, Tusa said, but more women may be diagnosed because they’re more likely than men to see their doctors.

Dr. Robert Baloh, a professor of neurology and surgery at UCLA School of Medicine who is an authority on MdDS, said some research suggested that people who suffer from migraines might be more susceptible to the syndrome. Both Tusa and Baloh say that most patients fully recover or substantially improve, although Tusa said that about a quarter of the patients whom he has seen had not improved.

However, Roger and Marilyn Josselyn of Blue Bell, Pa., founders of the 3-year-old MdDS Balance Disorder Foundation, said as many as 80% of those who experience some relief would have a recurrence, based on e-mails they have received at an online patient-support group on Yahoo! and at their website, www.nhffoundations.net/MdDS.

Dizziness can be caused by a number of problems, from low blood pressure to damage of the part of the vestibular area of the inner ear that helps control balance. MdDS is diagnosed by eliminating the possibility that one of these disorders accounts for the rocking sensation.

“Whatever it is, it’s not structural,” he said. “It’s something in the perceptual centers in their brain.” The brain adjusts for the motion of the boat, he explained, but in MdDS patients, the brain doesn’t re-adjust for life on solid ground. “We think it is normal physiology that goes awry.”

Doctors who know about the syndrome disagree about the diagnosis, said Baloh, but patients typically start seeking relief from their family doctors, many of whom have never heard of the ailment. “Most physicians don’t recognize this disorder,” he said. “They think maybe [the patient with MdDS] should see a psychiatrist.”

Roth’s family doctor told her she had inner-ear inflammation and gave her motion-sickness drugs, which did not help. She then went to an ear, nose and throat specialist but got no relief and also struck out with a number of alternative therapies. Through the Internet, she discovered MdDS and found a Boston doctor who confirmed the diagnosis. He prescribed clonazepam (Klonopin), a drug used to treat seizures and panic disorder. She said that drug, regular exercise and the support of friends and family helped tremendously. Today, she said, she is tapering off the clonazepam and experiencing only mild, occasional episodes of rocking.

Russo tried clonazepam and other similar drugs, but the effect was very mild and temporary. Now she is taking acetazolamide (Diamox) for vestibular migraines, but she said she couldn’t tell if it was helping.

Tusa said it was important to keep patients active and moving because a sedentary lifestyle made matters worse. He also encourages patients to engage in any stress-reduction activity that works for them. For drug therapy, he uses a very low daily dose of the anti-anxiety drug paroxetine (Paxil).

Baloh said patients could benefit from activities that help sharpen balance, such as tai chi and a form of physical therapy called vestibular rehabilitation. Dr. K.J. Lee, chief of otolaryngology at the Hospital of St. Raphael in New Haven, said he has had success with this approach.

Christine Fischer, a spokeswoman for the International Council of Cruise Lines, a trade organization, said ship doctors were aware of the disorder but that it was not of industrywide concern.