Kleine-Levin Syndrome

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Hunger, fixation on sex, and sleeping in are normal among teenage boys. But when these behaviors are extreme, it may be the Kleine-Levin Syndrome (KLS), or what some have dubbed “the Sleeping Beauty syndrome.”

The KLS is a rare neurological and sleep disorder that mainly affects teenage boys. The median age of onset is 15. About 70 percent of those with the disorder are adolescent males. Fewer than 200,000 patients in the U.S. have it.

On average, patients experience 7 to 19 episodes lasting 10 to 13 days each, and relapse every 3.5 months.  

Causes and Diagnosis of KLS

The cause of KLS is still unknown.

The bouts are intermittent: they can last from a few days to a couple of months with no symptoms whatsoever in between them. Relapses can occur for up to a decade when the illness spontaneously resolves itself. The sudden onset of each bout can be accompanied or triggered by flu-like symptoms or infections (38.2%), head trauma (9%), alcohol consumption (5.4%), or sleep deprivation.

Since brain imagings do not show any abnormalities in KLS sufferers, the criteria for diagnosis are clinical, relying on patients’ and families’ descriptions of behavior. They include the sleep disorder (hypersomnia lasting from several days to longer); overeating (or, more uncommonly, anorexia); and various psychological irregularities following the onset of the other symptoms.

While the cause of KLS has not been determined, the syndrome tends to run in families, especially of Jewish ancestry. About 15 percent of the KLS patients are of Jewish origin and “the incidence reported in Israel is unproportionately high,” according to a paper in a Jewish medical journal.

“The most promising findings are the familial clustering and a potential Jewish founder effect, supporting a role for genetic susceptibility factors,” according to French researchers.  

How to Deal with KLS

The good news is that the disease tends to disappear on its own: Over time, the attacks are less disruptive and/or they diminish in frequency. On average, it takes 8-14 years by the time the disease goes away on its own, with longer duration in men, in patients with hypersexuality, and when onset is after age 20.

The bad news is that there really isn’t much that can be done to treat the disease and there is no cure.

Amphetamines and lithium have some efficacy but antiepileptics don’t. Amphetamines helped decrease the oversleeping in 40% of patients. According to the same review in the journal Brain, “lithium had a higher reported response rate (41%) for stopping relapses when compared to medical abstention (19%).”

Outside of these attempts to mitigate the symptoms, patients and their families are usually told to inform themselves, connect with others experiencing the same syndrome, and wait the disease out.

Online Kleine-Levin Resources

 

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