When Cindy Balayewich sailed with her daughter Emily to Alaska last summer, the seven-day cruise rocked her world, she says. The trouble is, nine months later, her world is still rocking.
Ms. Balayewich, 50, says she can't walk down a long hallway or go into a mall without feeling dizzy. Horizons look like they're swaying and big open spaces make her head spin. Because she feels shaky on her feet, Ms. Balayewich had to stop lifting patients in her job as a nurse at BC Children's Hospital in Vancouver.
She went through months of tests before she was referred to the neuro-otology unit at the Vancouver General Hospital, a.k.a. the dizzy clinic. At last, she received a diagnosis: mal de débarquement.
The term - French for "landing sickness" - describes a rare disorder that gives people the illusion of being in motion long after they've stepped off a boat. Unlike the hours or days it normally takes to get back one's "land legs," mal de débarquement may persist for weeks, months and years.
For sufferers like Ms. Balayewich, being in motion offers the only reprieve from the unnerving sense of bobbing and swaying all the time. "I love driving because then I don't feel this way," she says.
Despite increased fatigue and bouts of nausea, Ms. Balayewich is able to work. But others are debilitated by the disorder and become "absolute shut-ins," says Yoon-Hee Cha, a neurologist at the University of California, Los Angeles, and one of the few experts on mal de débarquement.
Dr. Cha is using brain imaging technology to study patients from a set of 250 people with the disorder. Besides sensations of rocking and tilting, patients may develop migraines, mental confusion, extreme fatigue and tinnitus (ringing in the ears), she says. In some cases, "people have a hard time doing things like being on the phone or taking a memo."
Researchers don't know how rare the life-altering condition is or what causes it. But tests suggest it's not the same as vertigo or balance disorders associated with aging or problems of the inner ear, Dr. Cha says.
Rather, it may be due to a glitch in the brain pathways involved in learning and adaptation. After reorganizing neural networks to function on a moving vessel, the brain fails to readapt on firm ground, Dr. Cha explains. "It is definitely a neuroplasticity problem," says Dr. Cha, referring to the brain's ability to form new neural connections throughout life.
Although it can strike adults of all ages, patients tend to be middle-aged women who took seven-day cruises. Other triggers can include riding in an airplane, train, car or high-speed elevator. But some people develop symptoms spontaneously and without recent travel, Dr. Cha says.
There are no effective treatments or cure, says Marilyn Josselyn, president of the MdDS Balance Disorder Foundation - Mal de Débarquement Syndrome in Audubon, Pa.
Certain antidepressants and anti-anxiety medications can take the edge off symptoms, and therapy designed for balance problems may help some people to cope. But medications for other forms of dizziness or motion sickness don't work for people with mal de débarquement, she says.
The foundation has 1,300 members, and occasionally, Ms. Josselyn has heard of people rejoicing when their symptoms went away, she says. But usually, within a few years, "they're back."
Ms. Josselyn, 75, has felt like she's rocking in a boat for 12 years, ever since she took a Russian river cruise. Disequilibrium forced to her to quit her job as a stenographer, she says, and she is plagued by symptoms at all times, "unless I'm sleeping."
Only a handful of studies have been published about mal de débarquement. Since doctors tend to be unfamiliar with the illness, people with severe symptoms have had problems filing for disability insurance, she says. "It's a tough fight."
Brian Clark, a neuromuscular physiologist at Ohio University, says he had never heard of mal de débarquement until September 2010, when he examined an alumnus of the university who had symptoms.
He is now comparing the neuromuscular functions of a dozen patients with mal de débarquement with those of age-matched controls. New findings may shed light on ways to retrain the brains of afflicted people, he says, and help researchers develop a diagnostic test. Until then, "it's completely a diagnosis of exclusion."
Dr. Cha says she's hoping to find a marker for the disorder. She is using functional MRI (which measures blood oxygen changes in relation to neural activity) to look at differences in brain connectivity and positron emission tomography (PET) scans (nuclear imaging) to see whether part of the brain is using too much sugar because it's too active. Since brain scans of patients haven't found any structural abnormalities, she says, "it really has to be a functional problem in terms of how networks of neurons are behaving."
But until the illness is better understood, sufferers are in the same boat as Charles Darwin's grandfather, Erasmus Darwin, who in 1796 became the first physician to document that after long voyages on land or at sea, "the rattling noise of the coach, as well as the undulatory motion, haunts us."