PITTSBURGH -- Can you imagine not getting a good night's sleep for over 40 years? That's what happened to a Carol Kowall a retired Pittsburgh attorney. Kowall has suffered from Restless Legs Syndrome (RLS) for most of her life.

RLS is a neurological condition that causes uncomfortable sensations in the legs and uncontrollable urges to move them Some people say the sensation feels like insects are crawling under their skin. In Kowall’s case the sensations were more painful.

“It feels like an electric cattle prod or if you've ever grabbed an electric fence. In the worst situation it feels almost like torture,” Kowall said.

Kowall is not alone. It’s estimated up to 5 percent of Americans suffer from RLS. The feeling usually begins at bedtime and often leads to insomnia

Dr. Charles Atwood, associate director of the University of Pittsburgh Medical Center Sleep Medicine Center said, “People with RLS are sometimes referred to as night walkers because they're up walking around at night because it helps this very uncomfortable feeling go away.”

Sleep deprivation which can be dangerous and life changing.

Kowall said, “I've actually dozed off at a stop light and then I have to stop the car. The sleep deprivation is the main reason I stopped practicing law.”

In law school Kowall spent most of her classes pacing in the back of the room taking notes. When she went to the theater she always got an aisle seat so she could leave when her legs started moving.

Kowal saw many doctors over the years, but not was much known about the disorder and many physicians believed the problem wasn’t real and was just in the patient's head.

That is something Atwood said is not true and leads to many people suffering in silence.

“We know it is a real condition. If you’ve seen patients or know somebody who has RLS they’ll tell you it’s not in your mind it’s really in your legs and in the dopamine in their brain,” Atwood said.

While the exact cause of RLS is not known Atwood said iron levels in the brain, particularly in the brain chemistry that relates to dopamine, seem to have a key role in RLS.

“We can measure iron levels in the blood and that correlates with what is stored in the brain and we know many RLS sufferers have low iron levels. When we give them iron replacement it has a beneficial effect on their system, “Atwood said.

Two drugs to treat RLS have been approved by the Federal Drug Administration: Ropinirole, which is sold under the name Requip, and pramipexole, sold as Mirapex.

Kowall takes Mirapex and will begin getting iron treatments. The medication has changed Kowall’s life. She has fewer sleepless nights and often thinks about what her life would have been like if she’d been treated sooner.

“I think I did a lot in my life, but I imagine what I could have done if I hadn't been sleep deprived for the last 40 years,” Kowall said.

Recently scientists identified a gene that may be the cause of many cases of RLS. This doesn’t surprise Kowall.

“I had it. My mother developed it, my grandfather had it very seriously, his mother had it as well,” Kowall said.

Kowall said her daughter now has RLS symptoms too. In all, five generations of Kowall’s family have suffered from this syndrome.

She said she hopes the cycle stops with her.

“I really hope my grandchildren never have to experience this,” Kowall said.

LINKS:
- Restless Legs Syndrome Foundation
- UPMC Sleep Medicine Center