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The night walkers Little-understood 'Restless Legs' can make sleep an elusive dream 05/28/2001 By SHERRY JACOBSON / The Dallas Morning News A strange medical condition has been robbing Bob Whitehead of sleep since the mid-1980s. "It feels like worms or snakes are crawling up the inside of my legs all night long," says the 57-year-old former public official. Restless Legs Syndrome The syndrome is a sleeping disorder estimated to affect 12 million Americans. It is often described as a burning, creeping feeling that is like insects crawling inside the legs. Lying down and trying to sleep activates the feeling. Its cause is unknown, but it affects more women than men. Half of all sufferers share the condition with family members, suggesting a genetic component. Symptoms worsen at rest or at night, causing sleeplessness due to tossing and turning in bed, rubbing of legs and pacing. Certain medications relieve symptoms temporarily, allowing longer periods of sleep. SOURCE: National Institutes of Health The symptoms got so bad that Mr. Whitehead took early retirement last December as director of public works in Colleyville. He was worried that his lack of sleep was compromising his ability to oversee the dramatic growth of the northeast Tarrant County community. "I had a general feeling of not being able to do my job mentally because I was so sleep-deprived," recalls Mr. Whitehead. "Retirement has allowed me to take a nap in the afternoon." Mr. Whitehead's mysterious condition is shared by an estimated 12 million Americans, many of whom are forced to modify their lives because their legs won't let them sleep through the night. Although certain medications have been shown to reduce the symptoms, the syndrome ranks as the fourth-leading cause of insomnia. Stress, depression and anxiety are the top causes underlying sleep disorders, according to the National Sleep Foundation. Still, researchers around the world have been unable to unlock the mysteries of this restlessness, other than to agree that it is a neurological disorder. They also have concluded that it strikes more women than men. Children get it. So do some women during pregnancy. But nobody can say why. Maybe that will change soon. For the first time, the National Institutes of Health is seeking grant applications for researchers willing to delve into the disorder. The studies are expected to investigate who has restless legs, what drugs work best to control it, and how and when the condition manifests itself. Findings People who suffer from Restless Legs Syndrome have renewed hope that someone soon will unlock the secrets of their troubling sleep disorder. So far, studies have found that the syndrome: May be linked to attention deficit hyperactivity disorder. A New Jersey study recently concluded that almost 40 percent of people diagnosed with the condition appear to meet the criteria for the behavior disorder, which is characterized by inattention, restlessness, distractibility and impulsiveness. Can be alleviated by several classes of drugs, including dopamine precursors that modify the signals sent between nerves and muscles. Other positive results have been found by those who use certain sedatives and anticonvulsant drugs. May include a high percentage of people who also suffer prickly feelings in their arms. However, one study found that periodic arm movements do not seem to occur during sleep. Hits hardest among senior citizens. Several studies estimate that as many as 30 percent of people over age 65 suffer from nighttime restlessness of their legs. "The key is its circadian rhythm. It comes in the evening hours, usually between 4 p.m. and 4 a.m.," says Dr. Philip Becker, a Dallas psychiatrist with training in neurology who has published three papers on the condition. Restless Legs Syndrome is more than a sleeping problem. Some people say they can't sit through a movie, a concert or a long road trip because of their jittery legs. "The symptoms are always relieved by movement," Dr. Becker says, describing how his patients often must get out of bed and walk to quiet their legs. It has earned them the nickname "night walkers." "Unfortunately, their relief is temporary. It keeps coming back, night after night," says Dr. Becker, who is executive director of the Sleep Medicine Institute at Presbyterian Hospital of Dallas, where he monitors 300 patients diagnosed with Restless Legs Syndrome. People who suffer from the condition often join support groups that have sprung up across the country in the past decade. They are surprised to learn how common the ailment is, says Helen Simons, 80, who oversees a support group in the Houston area. "We compare notes and often discover that this is a problem that has been in a family for generations," she says. "My daughter remembers my grandmother up walking in the night when she visited. Nobody talked about it. If they did, they called it 'funny legs.' About half the people with restless legs have a close relative with the condition, suggesting a possible genetic component. Although the syndrome was identified and named in 1945 by a Swedish researcher, its symptoms have been described in medical literature dating back to 1672. An English physician, Sir Thomas Willis, had called it a "terrible restlessness" that turned a bed into "the place of greatest torture." Restless leg syndrome • Fact sheet (National Institutes of Health) •Extra content index More than 300 years later, an international study group agreed that four basic criteria must be present for a diagnosis of Restless Legs Syndrome. The 1995 guidelines require that a person feel uncomfortable sensations in the legs, along with an urge to move to relieve the discomfort. The symptoms must occur during periods of rest, and grow worse in the evening and night. Still, many such sufferers probably don't seek medical attention because the condition is difficult for them to comprehend, says Cate Murray, spokeswoman for the Restless Legs Syndrome Foundation, a 10-year- old advocacy group based in Rochester, Minn. The foundation has funded a number of small research efforts over the past four years and attracted 10,000 financial contributors, she says. So far, treatment includes dietary and lifestyle changes that promote good sleeping habits, such as moderate exercise and not drinking caffeine or alcohol. A number of medications intended for other ailments, including Parkinson's disease, also provide some relief. And some sufferers are found to have an iron deficiency that can be treated allowing them to sleep again. But the foundation's leaders are frustrated, Ms. Murray says, that no drug company has conducted a single clinical trial that targets Restless Legs Syndrome, although a number of medications are commonly used for it. Instead, doctors prescribe drugs based on "open-label" studies that show some measure of sleep improvement in a small group of patients. "It's an injustice to patients to get a prescription for a drug, and the only information is about Parkinson's," she notes. "Our goal is to identify effective treatment through research or, if we must, through anecdotal reports from patients." Even before his retirement, Mr. Whitehead says, he tried a number of medications in search of a good night's sleep. "One medicine made my movements more violent and I would kick my wife out of bed," he recalls. "Even on medication that works, my legs feel tense and I have to get up two or three times in the middle of the night to stretch or walk around." But at least nobody thinks he's crazy anymore when he describes his symptoms. "It's kind of coming out of the woodwork," the former public official says of the syndrome. "And that's got to be a good thing." http://www.dallasnews.com/lifestyles/stories/378641_jitterleg_28li.html ********** ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn