When Your Brain Insists You’re Always on a Boat

January 31, 2018

A few years ago, Chris Perry went on an Alaskan cruise with her family to celebrate her parents’ 50th wedding anniversary. When she boarded the massive Norwegian Sun cruise ship, she felt “a little woozy and weird” from the boat’s gentle rocking, she remembers, but the sensation quickly faded. Perry didn’t feel seasick at all during the rest of the cruise, and spent a happy week marveling at the glaciers. But while standing in the Anchorage airport to catch her flight home to San Francisco, she suddenly felt the ground moving under her, undulating with the gentle rhythm of waves.

Many people have experienced this sensation after getting off a boat; they may sway or stagger until their vestibular system re-adapts to stationary ground and they get their “land legs” back. For most people, the feeling vanishes within minutes or hours. But in rare cases, and for mysterious reasons, the illusion persists for months or even years. Perry is one of those unlucky ones, a sufferer from the disorder rather poetically dubbed Mal de Debarquement syndrome.

Perry had felt the world bobbing beneath her feet for nearly four months. She also had the constant sensation that her body was swaying in a clockwise circular motion, as if she were balancing on an unsteady deck. These feelings never stopped, and they completely disrupted her life. Over the months, she discovered which activities made her disorientation worse: looking down (chopping vegetables and doing dishes became problematic), focusing on something close-up (ditto for reading), sitting still with her eyes closed (so much for meditating), and being under bright fluorescent lights (forget about grocery shopping).

Perry grappled not just with daily discomfort, but also with the fear that something in her brain was permanently broken. “I cry every day,” she told me. She had seen a succession of doctors, neurologists, and inner-ear specialists, but none of them could help. Physical therapy didn’t do any good, and a prescription for Klonopin, a Valium-like drug that both reduces anxiety and suppresses the action of the vestibular system, only reduced her symptoms for short stretches.

“They’re going to put me in a magic spinning room,” she said wryly. “I hope so much they can fix me.”

But there’s new hope for Perry and for others, like her, who are internally out to sea. Their salvation may be found in a small, windowless lab at Mount Sinai Hospital in New York City. Here neurologist Mingjia Dai thinks he has discovered not only the faulty mechanism behind Mal de Debarquement syndrome (the name is French for “disembarkation sickness”), but also the first therapy that treats it effectively. So Perry, feeling desperate, flew to New York and paid $1,000 for the experimental treatment. “They’re going to put me in a magic spinning room,” she said wryly. “I hope so much they can fix me.”

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