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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Could I have Kleine-Levin syndrome?

 sleepytx - Wed May 09, 2007 1:58 pm

Hello, I am a 27-year-old female wondering if I could have Kleine-Levin syndrome. I was diagnosed in 2001 with primary (idiopathic) hypersomnia. I had a two-part sleep study done at the time the diagnosis was made-it showed borderline narcolepsy but I don't have all the symptoms of narcolepsy. I've been prescribed Adderall 10 mg tablets to take tid since that time. I have stopped taking them for periods of time in between, both times when I was pregnant with and breastfeeding my children. I've had no surgeries and there is no family history of sleep disorders in my family. But as of late, I have had three long episodes of sleeping in the past two months. One lasted three days, the next was seven days, and the last was about ten days. Each day I was sleeping approximately 20 hours, sometimes more than that. When I am asleep I have very vivid dreams and it is difficult for my husband to wake me up. When I do get up, it's to eat something quick or to go to the bathroom. I'm extremely confused when awake during these episodes and just want to go back to sleep. My muscle strength is also very weak and it's hard for me to walk or to pick up my children. I was told all of these symptoms could be a sign of Kleine-Levin syndrome but that it is very rare. Is this possible, or are there any other (sleep) disorders that may cause this strange sleep behavior? I have been poked, prodded, and tested for a wide variety of other diseases (some include: depression, vitamin deficiencies, diabetes, blood diseases), but nothing has ever been abnormal. These sleeping episodes have become a huge problem and inconvenience for me, making it hard for me to go about my everyday life. Any insight would be greatly greatly appreciated. Thank you so much for your time.
 Dr. Chan Lowe - Sat Jun 09, 2007 9:51 pm

User avatar Kleine-Levin syndrome is a subtype of primary hypersomnia. It is fairly rare. Men are affected about 3X as often as women. Most people begin having symptoms during their teens and twenties. Onset after 30 is rare.

It can be associated with prolonged periods of excessive sleepiness that tend to recur every few months. In between sleeping episodes the patients don't really have any problems with excess sleepiness, etc.

It is also associated with some other symptoms such as eating disorders, other mood disorders and several other less commonly associated symptoms.

Treatment is basically symptomatic since the cause really isn't known. There are several different treatment options for Klein-Levin as well as primary hypersomnia in general. Stimulants such as adderall are one option. If it isn't working that well for you, you may want to discuss your symptoms with your doctor and consider trying a different treatment.

Best wishes.

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