Kleine-Levin Syndrome: Symptoms, Causes & Outlook (2024)

What are the symptoms of Kleine-Levin syndrome?

Symptoms usually begin in early adolescence and recur usually more than once per year. The average duration of KLS is 14 years. Symptoms include:

An episode occurs when you experience these symptoms for at least two days. KLS episodes can last for a few days, average around 10 days, or could last for a couple of weeks. One study suggests that people diagnosed with KLS have an average of 20 episodes during their lifetime.

Most people have trouble remembering what happens during an episode. They can wake up during an episode to eat or use the restroom but have limited physical function due to excessive sleepiness.

After you experience an episode, you’ll go back to your normal patterns of behavior and not have any symptoms of the condition except for possibly mild cases of memory loss.

What triggers a Kleine-Levin syndrome episode?

Certain events trigger symptoms of KLS, including:

  • Flu-like illness or infection.
  • Drug and alcohol use.
  • Head trauma.
  • Physical exertion.
  • Stress.

What causes Kleine-Levin syndrome?

The cause of Kleine-Levin syndrome is unknown. Some studies suggest that an illness or injury causes damage to the part of your brain that regulates sleep (hypothalamus).

Most cases of KLS occur after having an illness similar to the flu or an infection. Research speculates that KLS could cause an autoimmune response where your body confuses healthy tissue with an invading organism, which causes symptoms.

Other research suggests that KLS could be genetic, related to mutations on genes LMOD3 and TRANK1.

Kleine-Levin Syndrome: Symptoms, Causes & Outlook (2024)

FAQs

Kleine-Levin Syndrome: Symptoms, Causes & Outlook? ›

Kleine-Levin syndrome (KLS) is a rare condition that causes a person to sleep for long periods of time. People diagnosed with KLS experience episodes where they sleep up to 20 hours per day and have changes to their behavior. The direct cause is unknown but treatment for KLS addresses symptoms.

What triggers Kleine-Levin syndrome? ›

While the exact cause of KLS is unknown, there is emerging evidence to suggest that cold or flu symptoms often precede a Kleine-Levin Syndrome episode. Researchers also speculate that KLS could be caused by a head injury, infection, infectious disease, or autoimmune disorder.

What symptoms might lead a doctor to suspect a patient has Kleine-Levin syndrome? ›

Kleine-Levin Syndrome
  • Flu-like symptoms.
  • Overeating.
  • Irritability.
  • Childishness.
  • Disorientation (not being sure where you are or what is happening)
  • Hallucinations (seeing or hearing things that are not there)
  • An abnormally unlimited sex drive.

What age does Kleine-Levin syndrome start? ›

Symptoms associated with the disorder usually become apparent during adolescence. Individuals with Kleine-Levin syndrome may have episodes that last for a few days or up to several weeks. Episodes occur approximately two to 12 times per year.

Do people with Kleine-Levin syndrome eat? ›

Kleine–Levin syndrome (KLS) is a rare disease characterized by recurrent episodes of hypersomnia and to various degrees, behavioral or cognitive disturbances, compulsive eating behavior, and hypersexuality.

What is the prognosis for Kleine-Levin syndrome? ›

Outlook / Prognosis

People diagnosed with Kleine-Levin syndrome have a fair prognosis. Episodes usually decrease in severity and frequency over time. Most cases last for 10 to 20 years, with a median duration of 14 years. If you don't have any episodes for six years, healthcare providers consider the condition cured.

What is the triad of Kleine-Levin syndrome? ›

Although Kleine–Levin syndrome is characterized by the triad of recurrent spells of hypersomnolence, hyperphagia, and hypersexuality, it is likely that incomplete manifestation is more common than the complete triad.

How to test for Kleine-Levin syndrome? ›

As a result, potential KLS patients often will undergo a lot of tests in various specialties: for metabolic problems including diabetes, metabolic encephalopathies and hypothyroidism; an MRI to rule out a lesion, tumor or inflammation as the cause; even for multiple sclerosis, which has aspects that can mimic the ...

Is Kleine-Levin syndrome hereditary? ›

Although most cases of KLS are sporadic, familial occurrence (3 to 8% of relatives) has been reported in studies (5, 9), and there are reports of concordant twin pairs (9, 10) which, considering the rarity of the condition (a few cases per million individuals) (11), suggests genetic or shared environmental effects.

How long does KLS last? ›

Kleine-Levin Syndrome (“KLS”) is a rare sleep disorder characterized by recurrent episodes of hypersomnia lasting one to 3 weeks, associated with behavioral/cognitive disturbances, megaphagia and, more rarely, sexual disinhibition.

What is the difference between narcolepsy and Kleine-Levin syndrome? ›

KLS is characterized by extremely long sleep periods or prolonged night-time sleep. These periods of excessive sleepiness typically last about one to two weeks and recur several times a year (14, 15). In contrast to narcolepsy, KLS is a relapsing disorder with mean duration of 14 years.

Is Kleine-Levin syndrome the same as hypersomnia? ›

Kleine-Levin syndrome (KLS), also called recurrent hypersomnia or periodic hypersomnolence, is a rare sleep disorder characterized by recurrent episodes of severe hypersomnia associated with cognitive and behavioral disturbances such as confusion, derealization, apathy, compulsive eating, and hypersexuality.

What deficiency causes excessive sleep? ›

Vitamin B12 Deficiency: A Rare Cause of Excessive Daytime Sleepiness.

What causes sleep arousal disorder? ›

Possible triggers for episodes

It seems that a small disruption of sleep due to another cause, such as a health problem or travel, may elicit behaviors associated with confusional arousals. It was shown that fever, abrupt sleep loss, migraine, irregular sleep-wake schedules can be more associated with these events.

What percentage of people have Kleine-Levin syndrome? ›

Kleine-Levin syndrome (KLS) is the commonest recurrent hypersomnia, with a prevalence of 1–2 per million [1]. Despite significant advances in definition of the clinical syndrome, an effective treatment for KLS remains elusive.

What triggers Sexsomia? ›

In many cases, however, the triggers are factors that are more difficult to control, including: Sleep deprivation. Stress or anxiety. Fatigue or irregular sleep patterns.

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