Sleeping Beauty Writes Her Own Fairy Tale

Suzanne Reagan was once referred to as “Sleeping Beauty.” It was a nickname her Spanish teacher used to tease the high school student for sleeping during class.

Though some of her girlfriends also would fall asleep during class, Ms. Reagan fell asleep in all her classes and wound up failing the Spanish course.

It raised a red flag, but she never equated her unique sleeping patterns with a disorder. Like many teenagers, Ms. Reagan was constantly tired, had low energy and napped most days.

“Every day I’d be sleeping and [my teacher] would say, ‘Now Sleeping Beauty, wake up and pay attention,’” recalls Ms. Reagan. “I always knew there was something [wrong] with my sleep. I knew I needed more sleep than the average person.”

“Every day I’d be sleeping and [my teacher] would say, ‘Now Sleeping Beauty, wake up and pay attention.’ I always knew there was something [wrong] with my sleep. I knew I needed more sleep than the average person.”

It began around age 14, when she noticed symptoms such as sleep paralysis and cataplexy, a condition in which a patient experiences a sudden loss of muscle tone. To Ms. Reagan, it ran in the family. Her sister, Sarah, slept through many of her classes, too, and even recorded her college lectures so she wouldn’t miss important facts that could later show up on tests. What’s more, Ms. Reagan recalls that during her childhood, her mother napped most days and was always the first to fall asleep during a movie.

But after her older sister was diagnosed with narcolepsy – a neurological disorder that affects the control of sleep and wakefulness – Ms. Reagan knew that she, too, had to be tested.

“It was hard to do everyday things,” she explains. “It made it really hard to finish school. It was hard to keep a job. It’s almost like you’re pushing through life.”

Two years ago, Ms. Reagan underwent an overnight sleep study, or polysomnogram, at Cleveland Clinic Sleep Disorders Center at Fairhill, where physicians recorded her eye movements and brain and muscle activity to analyze her sleep patterns. The next day, Ms. Reagan took a Multiple Sleep Latency Test to measure daytime sleepiness through a series of naps. Sure enough, in November 2009, she, too, was diagnosed a narcoleptic. Her mother was later tested at Cleveland Clinic and diagnosed with narcolepsy as well.

Ms. Reagan’s history is fairly typical of narcolepsy sufferers, according to Nancy Foldvary-Schaefer, DO, Director of the Sleep Disorders Center.

“It often takes years for a correct diagnosis to be established,” Dr. Foldvary-Schaefer says. “Yet, appropriate treatment can lead to rapid and remarkable improvements in quality of life.” Ms. Reagan is extremely thankful for Dr. Foldvary’s support throughout her struggle to find a medication that best suited her. She now takes Xyrem® at night to reduce daytime sleepiness and cataplexy symptoms, and Dexedrine® during the day to keep alert. Almost immediately after treatment, Ms. Reagan’s symptoms were relieved.

“I’m actually able to stay awake and do things like a normal person,” she says. “Of course, there are always side effects with medication, but I would say the side effects are minuscule compared with what they’re doing for you.”

The nickname “Sleeping Beauty” no longer applies to Ms. Reagan – or to her family, for that matter. The lives of all three women have improved dramatically since diagnosis and treatment, which has brought them closer together.

These days, Ms. Reagan spends the majority of her time focusing on her dream, not on her symptoms. She writes music and plays guitar for her Michigan-based all-female metal band, Gates of Babylon. Prior to treatment, she couldn’t just pick up and make the three-hour trek to Detroit to practice with the band and play a show.

“But now, I’m able to do all those things,” she says. “It’s almost as if I don’t even remember how hard it was before.”