Travel Can Trigger Rare Neurological Condition

News-Leader: Travel-related illnesses are nothing new, especially during the summer months.

But what if your week-long cruise, or a flight, triggered a constant perception of rocking, bobbing, swaying, tilting and tumbling -- as if you were still in motion --that lasted months or even years?

That's what happened to Patty Boyd of Spokane, Wash., Donna Hall of Springfield and several hundred others diagnosedwith the silent, invisible neurological syndrome, mal de debarquement.

Medical mystery

Despite references to MdDS that date back as far as 1796, little is known about the rare, though non-life-threatening condition.

Through efforts of the not-for-profit MdDS Balance Disorder Foundation, www.mddsfoundation. org, more with MdDS are being properly diagnosed, learning what's known and finding fellow sufferers through online support groups.

The foundation's goal is to raise awareness about MdDS among doctors and patients, and raise funds for research to help determine its cause and find treatment. Two new research studies are being conducted in the United States, giving hope to sufferers like Boyd who have experienced several reoccurances.

For years, travel was part of Boyd's job as a U.S. Air Force medic, so her diagnosis of mal de debarquement -- from French to English, literally meaning "bad debarkment" -- seemed ironic after cruises in 2003 and 2005 left her rocking.

"I did all kinds of traveling while I was in the Air Force, with no problems whatsoever," Boyd says.

The rocking and bobbing lasted more than a year after the second cruise. Her third and current episode was triggered in spring 2010 by a flight to Hawaii. Although traveling by cruise ship seems to be a primary culprit, according to surveys, some get MdDS from flights, boats or other motion triggers -- including a waterbed for one. A few -- like a Kansas City woman -- develop MdDS spontaneously.

Disrupted life

In addition to motion, patients report episodes of feeling heavy heads --often described as "excess gravity" --and sensitivity to light and noise. In the throes of her initial episode, before learning what she had, "I thought I was going crazy," Boyd says. Her only relief from symptoms came while driving -- common among those with MdDS because they are in real motion.

For some, like Hall, 62, whose MdDS developed in 1999 after a cruise and flight home, symptoms have never gone away or may be more severe --meaning sufferers must curtail or quit work and favorite activities.

Hall no longer works -- not to mention snorkels or scuba-dives. Boyd retired from her military career, switching to part-time work at a fitness center, and reluctantly quit a lively Bible study.

Difficult diagnosis

One thing patients have in common: It usually takes visits to several physicians -- typically specialists --before getting an accurate diagnosis. When symptoms returned after her 2005 cruise, Boyd saw an ear, nose and throat specialist and was given an MRI.

"I thought 'it's gotta be a tumor,' " says Boyd, whose MRI -- like other sufferers -- was normal. Finally, Boyd's ENT diagnosed MdDS. To be safe, neurologists and other specialists may order tests to rule out more serious conditions.

"It's a difficult thing to diagnose. It's rare, so it's not the first thing you think of," says Springfield neurologist Rodney Quinn, whose practice has less than half a dozen MdDS patients. Treatment options are limited though lifestyle changes can help, he says, including staying active. Sufferers with more severe symptoms may take medication for depression or anxiety.

Now 50 and in her third MdDS episode --with no end in sight --Boyd makes "gratitude lists" and finds comfort in the fact that MdDS is "not going to kill me."

Hall says she takes one day at a time and focuses on positives, like her four grandchildren.

"One can still find ways to embrace what life has to offer," she says, "just at a different pace."


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