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.