Rare disorder makes people feel off balance for weeks or months

By Diane Daniel
Special to The Washington Post
Tuesday, March 16, 2010

When Claudette Broyles tries to describe to friends how she feels, she likens herself to a balloon on a string, tied to a post.

"I'm constantly rocking and swaying, but the level changes," said Broyles, 60, of Woodstock, Va. "If I'm having an average day, then it's like I'm a balloon in a mild breeze. If I'm having a bad day, it's like it's really windy."

I hadn't heard the balloon analogy before, but I could relate.

Broyles and I suffer from mal de debarquement syndrome (MdDS), an uncommon balance disorder that one researcher describes as "motion hallucination." For weeks, months or even years at a time, we feel that we are rocking, bobbing, swaying, even though diagnostic tests for balance, hearing and vision show up normal. The name for the illness is French for "disembarkation sickness," so called because it most frequently occurs after being on a boat.

Of course, many people have experienced the swaying sensations that occur just after a boat trip. But for those with MdDS, that feeling doesn't let up; it persists with varying degrees of severity, causing everything from clumsiness to the inability to walk without some kind of support.

Just how many sufferers there are is unknown, says neurologist Yoon-Hee Cha, who this year launched a study funded in part by the National Institutes of Health, the first time federal money has been used for research into the syndrome.

"We don't know how many people suffer from MdDS since many people are not able to get the right diagnosis," she said. "Until there is more widespread familiarity among physicians, we won't know for sure." She isn't sure who gave MdDS its name, but she believes it was first diagnosed in the late 1980s.

Cha, of UCLA's David Geffen School of Medicine, uses neuro-imaging to try to identify the location in the brain affected during MdDS episodes, with the hope of finding a treatment and a cure.

"It's a real disorder, even though patients don't look sick. It's still very under-recognized among physicians, so a lot of patients are educating their doctors about it," she said.

Broyles is going through her fifth round of MdDS in 28 years. Most episodes, she believes, were triggered by boats, but the latest occurred after a turbulent flight from England. The first two subsided within a few weeks, and the other two within six months. Her most recent? It has lasted eight years -- so far. The disorder prompted her to move from Fairfax to slower-paced Woodstock and has altered her life in many areas, she said.

As for me, I'm on my third bout in as many decades. This time, my brain has been at sea for half a year.

Mercifully, the symptoms disappear when we're in motion, so driving is usually a relief. But they worsen in confined spaces -- for example in a shower, where we have to hold on to walls and bars to stay steady.

Another sufferer, Marilyn Josselyn, 73, of Audubon, Pa., has had only one episode, but it has lasted a dozen years and counting.

Hers set in after a week-long river cruise in Russia. "When we got back from the cruise, I was rocking in my head and was off balance, and I couldn't concentrate," she said.

While I can still push through a work day, both Josselyn and Broyles can no longer muster enough concentration to hold jobs.

Josselyn felt fortunate to not have to fight her way through layers of uninformed doctors, as many have.

"I went to my family doctor, who sent me to a balance clinic. I was lucky because I saw a doctor who had heard of mal de debarquement. A lot of doctors still don't even believe in it."

Thanks in large part to Josselyn and her husband, Roger, that is starting to change. In 2003, they started the nonprofit MdDS Balance Disorder Foundation and an associated online support group. Through donations and grants, the foundation is also funding research in hopes of finding a cause and cure for MdDS.

Using the online support group, sufferers, who are often misdiagnosed, are sharing information about symptoms, possible treatments and doctors who are knowledgeable and empathetic about the syndrome.

One of those is David Zee, a professor of neurology at Johns Hopkins University School of Medicine who treats patients with vestibular (inner ear balance) disorders, including MdDS.

"This is one condition where it's more common that the patients diagnose themselves and then tell the doctor," he said. "It's a fascinating disorder where the brain is trying to figure out: Am I moving, or is the world moving?"

Two signs that a patient has mal de debarquement, he said, are if they feel a rocking sensation for weeks or months starting after a cruise and if they're fine when driving but not when standing, walking or sitting.

"In most cases, the symptoms are so stereotypical that it can't be anything else," Zee said. Furthermore, most sufferers are women, many between ages 20 and 50, leading some to believe hormonal levels are involved.

Some sufferers say they have gotten relief from their symptoms by taking clonazepam, a long-acting benzodiazepine used to treat anxiety, but there's no definitive treatment.

"The good news is that mal de debarquement usually subsides on its own," Zee said.

Anecdotal evidence suggests that most sufferers feel the rocking for a few weeks to a few months.

Melissa Choate, 32, of Fairfax, fits that description. Her first case of MdDS began three years ago during a week-long Caribbean cruise. Within six weeks, the rocking was gone.

Choate's second and latest episode, which subsided after seven weeks, started during her honeymoon in Aruba in early January.

"One day we went snorkeling from a catamaran, and the next day I felt the waviness. It was minimal, but later it got worse. For a few weeks, it was like I felt a G-force, where I felt my stomach drop and the sensation of being pulled backward."

She worries about recurrences and has an appointment with a balance specialist in Baltimore.

"What scares me the most is if you've had it once, you're more susceptible to having it again, and each time it gets a little longer," she said.

That's what happened to Broyles, the five-time sufferer, who only recently learned about the online support group.

"It's amazing how all our stories are alike," she said. "I feel like I'm not crazy after all, that there are people out there who understand it."

Daniel is a freelance writer based in Durham, N.C.

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