In addition to feelings of uncontrollable movement, MdDS patients also often experience anxiety, fatigue, difficulty maintaining balance, unsteadiness and difficulty concentrating. Stress and other triggers, such as exposure to noise or bright lights, can worsen symptoms.
Helowicz takes medication usually prescribed for seizures and panic disorders, which helps. “Before I started taking the medication, I would walk the streets at night because I couldn’t sit still,” she says.
Oddly, patients often do feel better when they are moving, a quirk that helps diagnose the disorder. “If that rocking feeling gets better when you are driving a car or back on the boat, it’s never anything else but MdDS,” Cha says.
MdDS sometimes disappears on its own, but it can come back. “However, if the symptoms last about six months, the chances of an eventual remission becomes lower and lower,” Cha says.
This is what happened to Helowicz. She had her first bout with MdDS in 1999, after a cruise. It resolved after a month but returned eight years later. “In 2007, for whatever reason, it didn’t go away,” she says. “It was like something just snapped and never reset.”