What is Kleine-Levin Syndrome?

Rip Van Winkle Disease, also known as Kleine-Levin syndrome is a rare disorder that causes recurring periods of excessive drowsiness and sleep (up to 20 hours per day). Symptoms, which may last for days to weeks, include excessive food intake, irritability, disorientation, lack of energy, and hypersensitivity to noise. Some patients may also experience hallucinations and an abnormally uninhibited sex drive. Affected persons are normal between episodes, although depression and amnesia may be noted temporarily after an attack. It may be weeks or more before symptoms reappear. Onset is typically around adolescence to the late teens. The disorder is 4 times more common in males than in females. Symptoms may be related to malfunction of the hypothalamus, the part of the brain that governs appetite and sleep.

In KLS, the association of an infection before the onset of a disease, a young age at onset, a recurrence of symptoms and possible genetic predisposition is suggestive of an autoimmune disease.

The disorder appears to be benign and does not impact on intellect or physical function. Symptoms usually improve or disappear with advancing age.

NINDS supports a broad range of clinical and basic research on diseases causing sleep disorders, in an effort to clarify the mechanisms of these conditions and to develop better treatments for them.

Read Some of Jeff’s Story:

The pediatrician on staff suspected viral encephalitis. On Thursday, they started Jeff on acyclovir and something else I don’t recall. The next few days, the hospital did all kinds of tests- CAT Scan, MRI (very upsetting to Jeff), EEG, EKG, more blood and urine tests. They wanted to do another spinal tap and Jeff went crazy. He knew how much that hurt. The hospital staff didn’t want to allow either John or me in the room while they did the spinal tap. John told them if they didn’t allow one of us in the room, they weren’t going to do the test. So, I was permitted to be in the room, but was told to stand in the corner and keep my mouth shut. Children’s Hospital is a teaching hospital and well renowned for the job they do. An intern was the person trying to do the spinal. Jeff was not being very co-operative. There were 2 male nurses holding him down. They told me to hold his hands and try to calm him down. He bit me so I would let go and he spit on the nurses suede shoes so that he would let go and Jeff could get away. The ‘doctor’ got the needle………………

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Bibliography of case studies

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2 thoughts on “What is Kleine-Levin Syndrome?

  1. O have been challenged with KLS for about 6 years. I am a male 45 years old. Lithium, Provigil and on occasion Ritalin have been VERY helpful. I would be happy to share my experiences with anyone if it would be helpful. Send me an email.

  2. I am a 60 year old female patient diagnosed with sleep apnea but the disorder I have seems unusual for that diagnosis (from what I see with other friends with the same diagnosis.) The Rip Van Winkle Syndrome sounded plausible for me until I found that it was mostly diagnosed in young people (mostly boys) and the sexual component is also different from my condition. I have also been diagnosed with fibromyalgia and chronic fatigue syndrome but my symptoms are much worse than others I know with these also. The reason I am interested in the RVW Syndrome is because I sleep about 18 – 20 hours daily for 4-5 days in a row and then become unable to go to sleep for 2-3 days in a row! This is driving me crazy and my husband, too! Anybody have any ideas about this? It seems more intense than fibro and CFS. B.J. Bontempo

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