Kleine-Levin Syndrome Turns Young Adults to Babbling Babies


Children Eventually Outgrow KLS

There are no effective drugs to treat the disorder, although some patients have had some success with lithium, which is used to treat bipolar disorder.

Like other parents, they are desperate to find relief during these KLS episodes and will try anything -- acupuncture, chiropractics and even smoking the hallucinogenic drug salvia.

Haller tried an oxygen chamber to no avail. He had such a bad reaction after trying the stimulant Provigil that he was hospitalized for two days.

He never knows when the episodes will occur or even how long they will last.

"The hardest part is time goes by so slowly and it's so frustrating," said Haller. "Movies I have seen before, I watch over and over, 15 times. And it takes me about two to three weeks to fully adjust after it's over. It's tough."

Many patients' families report that symptoms began after a viral infection, which may make the brain "more vulnerable" to KLS, according to Dr. Phyllis Zee, director of the Sleep Disorders Center and professor of neurology at Northwestern University.

The disorder seems to be more prevalent among Ashkenazi Jews and is sometimes seen in siblings, which would suggest a genetic predisposition.

"Structurally, you look at the brain and it's normal, except for its functionality," said Zee. Before KLS becomes full-blown, parents may notice a change in temperament or personality, confusion and prolonged sleepiness.

Some act out sexually when they are in an episode. "Imagine a teenager in front of his friends masturbating," she said. "People think either he is being an exhibitionist or he has a psychiatric condition. It's embarrassing."

One of Zee's KLS patients was referred to her because she was hospitalized "in a weird state."

"She came in hypersexual and was trying to make out with the nurses," she said. "Normally, she was a proper young woman."

Zee said patients will eventually outgrow the disorder, but they just don't know when.

"We never see it when patients are in their 40s," she said.

As for Haller, he knows how embarrassing KLS episodes can be. Now, he is open with his friends about his disorder, but is hesitant to share with strangers, especially when he has been out of school or work for an extended period of time.

"I don't want them thinking I am that kid with the sleeping disorder," he said.

In the meantime, he takes the attitude that the episode that ended a week ago will be his last and he takes care of himself.

Haller doesn't smoke or drink alcohol, gets plenty of sleep and limits his stress. He works out regularly at a fitness center.

"I take precautions and health steps," he said. "You've got to be smart with it and smart with yourself ... Honestly, I don't let it affect my life in least bit and I try to have a positive attitude. I don't let it hold me back."

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