Last Friday on NBC, TODAY told the story of a British girl with a rare sleep disorder that causes her to sleep for days.
Louisa Ball, a 15-year-old, suffers from Kleine-Levin syndrome. It is one form of a sleep disorder called recurrent hypersomnia.
She had flu-like symptoms just over a year ago. Not long after that, she had her first period of severe, extended sleepiness. Her longest stretch of sleep has been for 13 days.
Recurrent hypersomnia involves long periods of severe sleepiness. A person may sleep for as long as sixteen to eighteen hours per day, waking only to eat and use the bathroom.
These sleep episodes can last for a few days or for several weeks. They may occur about one to 10 times a year, appearing weeks or months apart. Before and after the episodes, both sleep and behavior are normal.
“There’s only probably a few thousand people with the disorder,” AASM member Dr. Emmanuel Mignot told TODAY. “They often don’t get noticed.”
A flu-like illness or an infection of the upper airway may occur prior to the first episode of severe sleepiness. So it’s possible that the syndrome is triggered by a viral infection.
“We think that some people are genetically predisposed to having an infection that then doesn’t clear up and seems to relapse regularly,” Mignot said. “That gives the symptoms of sleeping all the time for days at a time.”
Recurrent hypersomnia tends to first appear in the teenage years. Typically the sleep episodes become shorter and less severe over a period of years.
Other types of hypersomnia include narcolepsy and idiopathic hypersomnia with long sleep time.
Get help for an ongoing sleep disorder at an AASM-accredited sleep center near you.
I'm 34 years old since this story on TV last week has answered so many questions I've had in my life. I have been seeing my Neurologist who is also AASM accredted for 3 years. I have told him time and time again when it started in high school after I got sick and how the overwelming need for sleep and hazyness comes on all of a sudden last for different amounts of time and is gone. I have been on Adderall for 3 years during may "spells" I can go to sleep on 40 mg of Adderall. When I took this information to him yesterday he thought I was crazy. He said it was so rare I couldn't have it. Does anyone have any ideas? I'm an RN and very tired of sleeping my life away..I'm willing to try any reseach. There is very little medical information out there. Please help. nursedemmitt@hughes.net
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