Kleine-Levin Syndrome. Prolonged periods of sleep. No cause, prevention, treatment, or history.

Didn't know where to post this, please move if needed.

I found an article about a teenager named Louisa Ball who back in 2008, as she was recovering from the Flu, started experiencing prolonged periods of sleep. She's gone as long as 10 days but others with more severe cases can have sleep experiences that will last for weeks at a time....

Louisa Ball does not even know about her prolonged sleeps, which began in 2008 as she recovered from flu, were initially thought to be hormonal until she was diagnosed with Kleine-Levin Syndrome last year.

So she was diagnosed with Kleine-Levin Syndrome and her life isnt much easier, for her or her parents...

Miss Ball’s mother Lottie, 45, told a national newspaper: “She was exhausted and didn’t seem to be getting any better. She started to fall asleep at school and was rambling about things that didn’t make sense – just like she was talking in her sleep. “It really scared us, we didn’t know what to do. It just didn’t seem like Louisa was the daughter we used to know – she was like a different person.” Doctors at Worthing General Hospital were baffled by her symptoms, and suggested the problem could be to do with hormones. Miss Ball’s sleeping episodes began to stretch to ten days at a time, during which time her parents would wake her once a day to feed her and take her to the bathroom, before she succumbed to sleep again.

Teen with sleep disorder

So what is Kleine-Levin Syndrome? What are other effects besides prolonged sleep?

Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike. When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported.

I dont want to sound ignorant but is this a chemical imbalance? Is this from something that we had to put into our system at one point or another weather through vaccinations or medicine or food? These people can be normal one week and the next almost comatose.

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. Not everyone affected by KLS exhibits all of the symptoms described above. 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 robs children and young adults of big pieces of their lives, one agonizing episode at a time.

And the worst part is actually diagnosing it. This is not one of the things the doctor looks for so the delay can take up to 4 years.

The mean diagnostic delay for proper KLS diagnosis is four years, causing undue suffering to patients and families. The cause of Kleine-Levin Syndrome is not known.

KLS Foundation

The cause is unknown...I wondered if there was any research towards this, or any treatment:
National Institute of Neurological Disorders and Stroke

There is no definitive treatment for Kleine-Levin syndrome and watchful waiting at home, rather than 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 cognitive 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. This disorder should be differentiated from cyclic re-occurrence of sleepiness during the premenstrual period in teen-aged girls, which may be controlled with birth control pills. It also should be differentiated from encephalopathy, recurrent depression, or psychosis. What is the prognosis? Episodes eventually decrease in frequency and intensity over the course of eight to 12 years. What research is being done? 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.

Sorry for the long post but I find this to be very interesting. There isn't alot of info out there on this and if there is then you know where it's really at. There's no way in treating or preventing or even just knowing the slightest bit of info. Does anyone have any knowledge on this topic? I didnt know this existed until today so I'm very curious on this subject. Thanks.

Found a little background. According to this it's almost exclusive with young males.

A strange condition of unknown aetiology which almost exclusively affects young males aged 15-25 years. Characterized by periods lasting from days to weeks of attacks of somnolence accompanied by excessive food intake, and various mental symptoms. Common mental symptoms are confusion, irritability, restlessness, euphoria, hallucinations, delusions, and schizophreniform states. Attacks may occur every 3 to 6 months and last from 2 to 3 days. Between attacks the patients recover completely and the sleep periods usually disappear in adult age. This syndrome may easily be confused for other neurological, metabolical or psychiatric disease Willi Kleine described a series of nine cases of recurrent hypersomnia in 1925. In 1936, Max Levin added a series of five other cases, focusing on the relationship between hypersomnia and disturbed eating. In 1962, Critchley, who gave the disorder its name, added to the literature 11 cases he had personally observed as a physician for the British Royal Navy. In a recent review of the literature, Arnulf et al compiled 186 cases dating from 1962 to 2004. Huang and Arnulf report on a description of KLS written by Alexandre Jacques François Brierre de Boismont (1798-1881). The syndrome was first described in 1786 by the French physician Edmé Pierre Chauvot de Beauchêne (1748-1824) who specialised in women's diseases. He took a special interest in the case of a 26 year old woman. Between the ages of 7 and 11, she had experienced episodes of extensive erysipelas, accompanied by fever, digestive problems, headaches and convulsions. "In her fourteenth year, she was overcome with a lethargic sleep which lasted several days, and it was so profound that she was believed dead. From that point forward, the affection of sleep recurred at regular intervals; it usually lasted eight to ten days, continuing at times for fifteen; and upon one sole occasion. It persisted into the seventeenth day." Beauchêne first examined the patient when she came to Paris at the age of 24 years. He personally observed four episodes of hypersomnia, lasting between 24 hours and 8 days. He reports: "During the first years of her disease, this girl had appetites as bizarre as they were dangerous, causing her to eat lime, plaster, soil and vinegar. Thereafter these appetites subsided, and she nourished herself indiscriminately with all sorts of aliment, excepting bread, for which she maintained an insuperable loathing till she was perfectly cured. This food always occasioned vomiting." We thank Olivier Walusinski for information submitted.

Whonamedit

Would like to know what ATSers think or know about this...

It's obvious what's happening.
Something has triggered a hibernation response.

Doctors should be looking at what causes hibernation and comparing that to what's going on inside these patients to understand it better.

I would suggest letting the sufferer sleep for as long as they want, waking up minimally just to keep the sufferer clean and not let them starve, but not try to make them wake up properly.

- After seeing a doctor, of course.

reply to post by Kailassa


I would want to do the same, letting them sleep and eat from time to time
Some sort of hibernation makes sense but from where? how? This is about a century old and we still have no information on it.