Kleine-Levin syndrome (KLS), also known as “sleeping beauty syndrome” or “familial hibernation syndrome,” is an extremely rare condition that causes intermittent episodes where you sleep for long periods of time, which prevents you from staying awake during the day (hypersomnia). KLS also affects your behavior. People diagnosed with KLS often sleep for 16 to 20 hours per day during a KLS episode.
What are the symptoms of Kleine-Levin syndrome?
Symptoms usually begin in early adolescence and recur usually more than once per year. The average duration of KLS is 14 years. Symptoms include:
An episode occurs when you experience these symptoms for at least two days. KLS episodes can last for a few days, average around 10 days, or could last for a couple of weeks. One study suggests that people diagnosed with KLS have an average of 20 episodes during their lifetime.
Most people have trouble remembering what happens during an episode. They can wake up during an episode to eat or use the restroom but have limited physical function due to excessive sleepiness.
After you experience an episode, you’ll go back to your normal patterns of behavior and not have any symptoms of the condition except for possibly mild cases of memory loss.
What triggers a Kleine-Levin syndrome episode?
Certain events trigger symptoms of KLS, including:
There isn’t a definitive treatment for KLS. In most cases, people with KLS don’t even take medication. During episodes, your healthcare provider can help you make accommodations — such as time off work or school — so you can sleep as much as your body needs. Other possible treatment options target symptoms of KLS. While some treatment options help keep you awake, one treatment doesn’t target all symptoms, especially symptoms that affect behavior and cognitive function. Treatment includes taking medicines like:
IV steroids: May shorten prolonged episodes greater than 30 days.
Stimulants or wake-promoting agents: Helps prevent sleepiness.
Your provider might suggest supportive therapy to work with a professional who can address changes to your behavior, hypersexuality, anxiety and depression.
Are there side effects of the treatment?
There’s no single medicine to treat Kleine-Levin syndrome. Your provider will work closely with you to monitor your symptoms and how your body reacts to certain treatments, especially amphetamines, as there’s a high risk of dependency associated with the drug.
Diagnosis of Kleine-Levin syndrome is challenging. There isn’t a specific test that can diagnose KLS. Healthcare providers diagnose KLS by eliminating other conditions with similar symptoms. They’ll begin your evaluation and work up after asking you about your symptoms, including how long you’ve had them and the severity.
Providers may offer tests including:
Sleep test to measure electrical activity in your brain.
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