Kleine Levin Syndrome

Many of us love to sleep in on Sunday mornings, but few of us sleep for 23 hours straight. Individuals who suffer from Kleine-Levin Syndrome (KLS) not only could sleep that long, but when they wake they often have altered behavior patterns. KLS is a rare and very complex neurological disorder. This disorder mainly affects teenagers.

A teen with KSL may become very drowsy and end up sleeping most of the night and day away (hypersomnolence). When they do awake, it is only to eat and go to the bathroom. The demeanor of the individual is unlike their “normal” behavior and appears to be childlike or “spacey”. They experience confusion, are disoriented, and lack energy often referred to as being lethargic. They also seem to be experiencing apathy (lack of emotions). Individuals with KLS also report feeling hypersensitive to both noise and light and feeling like everything is “out of focus”. Some behavior that certain individuals with KLS have reported experiencing is an uninhibited hypersexuality and food cravings (compulsive hyperphagia). These symptoms of KLS can persist for day, weeks or even months at a time followed by a return to more normal activities. Individual with KLS are not able to go to school, be gainfully employed or even care for them. Usually patients with KLS are bedridden, fatigued, and uncommunicative, even if they are awake. An individual with KLS may not have all of the symptoms described above. The symptoms may continue for a decade or more causing great disruption to the individual’s life and to their families. It can take as long as 4 years to make a proper diagnosis of KLS, which can result in suffering to the individual and the family members. At the present time there is no known cause for KLS.

KLS come in cycles. The confusion can include not being able to distinguish symbols, misinterpreting what people say, getting lost while driving although being able to follow traffic laws while driving. Feeling “disconnected” from what was going on. The individual may not be able to perform tasks such as alphabetizing files in an office situation or completing household cleaning tasks. An individual may have a period of being “normal” and then begin another cycle of sleeping for long periods of time, waking to go to the bathroom or prepare a meal and then crash in bed again, in a coma-like state.

KLS symptoms really disrupt family life especially if the person suffering is the mom with young children. It is just not possible to function adequately enough to participate in the day to day demands of a life that requires that you be responsible for others when you are not able to even care for yourself.

The period between cycles of being “symptom free” can vary from one patient to the next. The period of being free from a episode can be less than a week to a month, 6 months, 5 years even as long as 20 years.

The diagnosis of KLS can come before age 10 but the biggest age group seems to be between ages 16 and 17 with ages 14 and 15 coming in a close second.

The episodes can last in duration anywhere from 2 weeks to more than a month. Some individuals experience headaches during the episode especially when coming out of the sleep phase of the episode.

Medical experts including psychiatrists believe that KLS is a rare and complex syndrome with a triad of hypersomnolence, hyperphagia, and hypersexuality. It is possible that head trauma, physical exhaustion, dehydration, alcohol consumption, heredity, and also menstruation issues may play some role in coexisting along with KLS. Treatments for KLS include psychostimulants, light therapy and also mood stabilizers.

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