Kleine Levin Syndrome
BY: Tapan Patel & Mark Shihata
Kleine-Levin Syndrome (KLS) is a rare and neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder affects adolescents primarily, the disorder also strikes mostly in males with a shocking 70 percent of cases occurring in men. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night, waking only to eat or go to the bathroom. When awake, the patient’s whole attitude is changed, often appearing “spacey” or childlike. When awake the person experiences confusion, disorientation, complete lack of energy and lack of emotions. Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings are exhibited. Instances of no sexual drive and lack of any form of emotion during an episode have also been reported.
Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake.
Affected individuals may go for a period of weeks, months or even years without experiencing any symptoms, and then they reappear with little warning. In between episodes those diagnosed with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. However they function daily with the frightful reality that they could become sick again at any moment. KLS episodes may continue to reoccur for a decade or longer with devastating effects on the adolescent’s life and family. KLS steals children and young adults of big pieces of their lives, one long and painful episode at a time.
One of the few cases of this syndrome occurred in a 15 year old female, who lives in Europe. Her name is Louisa Ball, she has been suffering from this syndrome ever since she has had “flu like symptoms and has felt sick”. Though she is a girl, and having the female sex hold only 30 percent of the cases, she has the most severe. This “living Sleeping Beauty” has ad episode for 13 days, almost two weeks. She claims that right before having one these episodes she feels vague and “blank”. It may take her a few minutes to comprehend and answer questions, right before having an episode. Most of this teenage girl’s episodes last approximately 5-7 days. She has also been having abnormal feelings and hyper sexuality. Every time this girl goes to sleep, her parents pray that it will be her last episode.
The cause of Kleine-Levin Syndrome is not known. There is no permanent treatment for Kleine-Levin syndrome, pharmacotherapy, is most often advised. Stimulant pills, including amphetamines, methylphenidate, and modafinil, are used to treat sleepiness but may increase irritability and will not improve abnormalities. Because of similarities between Kleine-Levin syndrome and certain mood disorders, lithium and carbamazepine may be prescribed and, in some cases, have been shown to prevent further episodes. Mood stabilizers are usually prescribed to these patients, as it relates to the patterns of depression, and usually benefits the patient.
Concerning the history of KLS, the first reported case of KLS was reported in 1862. In 1925 there were multiple cases of hyper insomnia in the British Marines. This led scientist to think that there was raging disorder caused by the conditions of these marines. In that same year Willi Kleine and Max Levin had decided to work together to solve this rare syndrome. Hence the name of KLS, they had gotten the credit of discovering and solving the rare syndrome. One of their first discoveries was that it mostly affects males. They had also described an onset of puberty in adolescence who were affected by this syndrome. At the end they had also noticed an unusual eating pattern with people with KLS. One of KLS’s main characteristics is to spontaneously disappear and reoccur.
The statistics for KLS are mostly centered in one area. For example the age occurrences for KLS are centered between 10-20 years old. This does not mean that KLS does not affect ages older or younger than these ages. It was reported that after about 5-10 years of repeated KLS episodes, the occurrence rate starts to hinder and slow down, though this does not always happen in all cases. In conclusion KLS is a rare, but monotonous syndrome. KLS is mostly present in teenage boys and can have episodes that last up to 2 weeks. When someone is going through an episode, the person can experience lack of mood and may only get up to eat, drink or go to the bathroom. Usually when patients are about to go into an episode, they may start to feel tired and it may take them a couple minutes to comprehend and answer a question. Patients who don’t experience episodes longer than 36 hours usually experience rapidly reoccurring episodes that usually last for about 18 hours a day. People who suffer from KLS usually do not attend school or work on a daily basis and are forced to live off of close friends or family, until their episodes start to slow down in occurrence and their episodes don’t last for as long.