When Brain Shuts Down, Legs Kick into Overdrive For years, David Kestenbaum had an ailment he couldn't identify — an irresistible urge to move his legs while trying to fall asleep or sit still. He has learned it's called Restless Legs Syndrome.
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When Brain Shuts Down, Legs Kick into Overdrive

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When Brain Shuts Down, Legs Kick into Overdrive


Now, you might have had an ailment that's hard to describe.

NPR's David Kestenbaum had that experience and he found what plagued him may go back to prehistoric times.

DAVID KESTENBAUM: I first remember the feeling when I was a kid. It was particularly bad when I was tired on long car rides. I wanted to sleep but I couldn't. There was this uncomfortable feeling in my legs that would build until my legs jerked. It was maddening. I can't describe what it feels like very well. It turns out no one else can either.

Dr. DAVID RYE (Neurology, Emory University): Oh, there's no words, unbearable, I mean, just a compelling urge to move.

KESTENBAUM: This is David Rye, neurologist at Emory University and director of the Emory Healthcare Program in Sleep. He has the condition too. It's called restless legs syndrome. Years ago, I found a checklist of symptoms on a Web site. And I had that feeling everyone must have when they discovered that what ails them has a name. Yes, yes, I thought. This is what I have.

There are some early references in the scientific literature. A British doctor wrote in 1683 about patients for whom so great a restlessness and tossing ensue that the diseased are no more able to sleep than if they were in a place of the greatest torture.

But that's it. No one really studied it seriously for the next 250 years until the 1940s. And when David Rye got involved, he studied himself.

Dr. RYE: I began to use myself as an experiment of nature and studied myself intensively with an accelometric(ph) device that could measure how much my leg kicked every night. I learned about restless legs experimenting on myself.

KESTENBAUM: Is that common for physicians to study themselves?

Dr. RYE: I don't know. I actually haven't really spoken to anybody else about it.

KESTENBAUM: Rye says there's a growing body of research now. Restless legs syndrome, RLS, appears to have a genetic component. There are some uncertainties in these numbers, but one large study found that in the U.S., if you take a room of 100 people, something like seven have experienced restless legs. Of those, three say it bothers them a couple of days a week. People with severe cases are miserable and sleep-deprived.

Mr. BOB WATERMAN (Chairman, Restless Legs Syndrome Foundation): My mom had it, and dad thought a bunch of us were nuts.

KESTENBAUM: This is Bob Waterman. He co-wrote the influential management book, "In Search of Excellence." But he hid is RLS for years because it just seemed so strange.

Mr. WATERMAN: If I'm in a restaurant, I go outside and walk around. And I just get very fidgety. I think I make people nervous just to look at me.

KESTENBAUM: Eventually, he became chair of the Restless Legs Syndrome Foundation, an advocacy group.

Mr. WATERMAN: One of the funniest things is to visit one of our board meetings. One of the delights about joining our board is that you don't have to sit still. And so people are walking around. They're lying on the floor with their legs up the wall. And it really is amusing, you wonder how we get any work done.

KESTENBAUM: Restless legs, at least in its mild form, seems relatively common, which makes you wonder is there something maybe good about having restless legs? Did evolution somehow favor people who couldn't stop moving? I decided to ask my doctor.

Dr. CHRISTOPHER EARLEY (Associate Professor, Department of Neurology, Johns Hopkins University): I'm Christopher J. Earley, an associate professor in the Department of Neurology at Johns Hopkins University.

KESTENBAUM: Earley is one of the major researchers in the field. And his work suggests that people with restless legs syndrome have reduced levels of iron in their brains. The body needs iron. So maybe, he says, restless legs is the body's way of saying, hey, go get some iron.

Dr. EARLEY: Five thousand, 10,000 years ago, the major source of iron was on the hoof. It was in the flesh, in the meat, and therefore the person that was out of the cave running around taking care of his restless legs was more likely to find meat and therefore more likely to find iron than the other guys sitting warmly in the cave keeping comfortable.

KESTENBAUM: And this wonderful trait would have been passed down from generation to generation to, unfortunately, me. Earley says people from Northern European descent, Scandinavia, seem to have a higher incidence. And he sometimes jokes about what he calls his Viking hypothesis.

Dr. EARLEY: My theory is, what could possibly possess a bunch of guys to get in the boat in the middle of winter and row across the Atlantic other than bad restless legs?

KESTENBAUM: Drugs are available for modern day Vikings. GlaxoSmithKline has been heavily advertising its drug, Requip, on TV. So much so that Earley and other physicians actually worry that people who don't really need drugs will end up taking them. He says drugs like this that boost dopamine levels in the brain can be helpful, but sometimes they make symptoms worse when used past a certain point.

For instance, one of the first dopamine drugs used to treat RLS was the Parkinson's medication containing levodopa. David Rye of Emory University says, at the start, patients were eternally grateful.

Dr. RYE: They would remain happy for weeks to months, and then you would invariably get a phone call that they were worse than they were when they first came to see you. And what they were screaming and describing you as is probably something you wouldn't want to repeat to your children.

KESTENBAUM: Bob Waterman, who you heard from earlier, takes what he calls a bouquet of medications. But he has also developed an elaborate set of home remedies. Doing something distracting seems to help. Waterman went through a period where he played the videogame "Tomb Raider" a lot. Sometimes he soaks his legs in hot or very cold water.

Mr. WATERMAN: Just walking around sometimes does the trick, or getting on an exercise bike…

KESTENBAUM: So your wife gets used to you crawling out of bed and disappearing in the night?

Mr. WATERMAN: Oh yeah. I mean this is our whole married life. I mean, me crawling around and her trying to get some sleep.

KESTENBAUM: He sometimes wonders if his ancestors were night watchmen.

David Kestenbaum, NPR News.

MONTAGNE: And that's Your Health for this morning. And you can learn more about the difference between restless legs syndrome and just being fidgety at npr.org/yourhealth.

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