Spring/Summer 2002
Volume 15, Number 1

Stilling Restless Legs

A Tailored Approach - Maybe Enhancing Iron - Is Likely Way to Go

One of the best things to happen to Louise Rowles was her husband's sleep apnea. While visiting a Hopkins sleep clinic, he asked his clinician, "Could you also help my wife? She walks around all night because she's got to move her legs."

Neurologist Earley checks up on patient Rowles.

 
From middle age on, Rowles, 75, had endured restless legs syndrome (RLS) without proper treatment. Continually misdiagnosed-"There was always the subtle suggestion that my problem was all in my head," she says-she'd pad around her house until before dawn, when the sensation would ebb and she could sleep.

"Many physicians aren't well-versed in RLS," says Christopher Earley, M.D. Ph.D., who, with Richard Allen, Ph.D., heads the Johns Hopkins Center for Restless Legs Syndrome. The problem may lie in diagnosis. As Rowles experienced, there's an uncomfortable, not-painful sensation, most commonly in the foot or leg. Patients describe it as an aching or "creepy- crawly" sensation or as increasing tension.

The driving force behind the feeling, however, Earley says, "is the ungodly urge to move-the perception that sitting still would drive you crazy." This akathisia vanishes when patients walk about but typically returns when they're still. Most patients experience secondary movements: repetitive jerks of the legs or whole body that appear during rest.

But more typically, says Earley, it's the therapy that's outdated. Because RLS disrupts sleep, the traditional approach has been with soporifics like the benzodiazepines. "They're still useful," he says, "mostly for those with mild symptoms."

He and Allen, however, offer patients a tailored protocol that may also include opiates, anticonvulsants or agents to increase or mimic activity of the neurotransmitter dopamine. The latter may help because recent research suggests RLS is largely a disorder of the substantia nigra and other specific subcortical brain regions normally rich in it.

"Dopaminergic drugs help almost every patient," says Earley. Rowles, for example, is convinced that dopamine-stimulating Pergolide changed her life. She recently took an 18-hour flight she "wouldn't have even considered" before. "But," says Earley, "the drugs must be carefully prescribed, to avoid symptom-augmenting that may appear."

No cure exists for RLS. But the future may hold one based, surprisingly, on iron availability in the brain. Earley's studies on cerebrospinal fluid and brain tissue show RLS patients have lowered iron that may or may not reflect what clinicians see in the bloodstream with standard diagnostic measures. His autopsies confirm low iron levels in brain regions rich in dopaminergic nerves.

"We assume there's some tie between dopamine and brain iron metabolism," says Earley. "We just haven't mapped it yet." For example, IV infusions of iron quickly still patients' restless legs, but that treatment has safety drawbacks. Meanwhile, Earley says, clinicians who suspect RLS should test patients for decreased iron stores, even if they're not anemic.

For more information, call 410.550.1044.