Sleeping beauty syndrome

Researchers working to understand hypersomnia so they can find a cure

Diana Kimmel was a photographer, medical billing specialist and a mom. For years, she blamed her extreme exhaustion on a hectic lifestyle — until her body shut down. 

"Too tired to go to kid's soccer games. Feeling like it wasn't safe to drive, making huge mistakes on work," she said.

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Kimmel spent five years trying to get a diagnosis. All the time, her need for hours of sleep was sharply on the rise. 

"I would be up to 15-16.  I would sleep all night long.  I would wake up and by 9, 10 o'clock, I was back in bed," she added.

David Rye, MD, PhD, Neurologist at Emory University School of Medicine in Atlanta says hypersomnia is much more intense than feeling a little groggy first thing.

"That feeling of that fog being there isn't going to go away with a cup of coffee," Rye explained.

Rye and colleagues at the Emory University Sleep Center are studying hypersomnia. They've identified a possible cause in some patients by testing cerebrospinal fluid.

"Their body is producing a small protein, or what's called a peptide that essentially mimics the effects of sleeping pills or anesthesia," Rye said.

Researchers are testing a drug that is already FDA approved to treat an overdose of sedatives.  It's called Flumazenil. Patients rub it into their skin like a lotion — or put it under their tongue, like a lozenge.

"I did see a noticeable difference after three days" Kimmel said.

She adds, she's not completely back to normal, but alert enough to get her life back.

"For me, that was like I won a gold medal," Kimmel exclaimed.

Rye says about 75 percent of the patients who came to the sleep center complaining of symptoms of hypersomnia tested positive for the peptide in the cerebrospinal fluid.  About half of those patients who used flumazenil responded to the treatment.


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