The real cause of Kleine Levin syndrome is still unknown; however, some researchers speculate below theories:
- Hereditary disorder: Very rare cases are seen in this disorder that affects more than one family member. This suggests genetics could play a role that may influence the likelihood of developing the condition.
- Autoimmune disorder: Autoimmune disorders develop when the natural defenses of the body begin to attack your healthy tissue instead of a foreign body for reasons that are unknown. Because the disorder typically follows a flu-like illness, researchers speculate that the development of this condition could be due to an underlying autoimmune process.
- Damage/malfunction of the part of your brain that works in regulating functions like sleeping, body temperature, and appetite. Abnormalities in the metabolism of the neurotransmitters, serotonin, and dopamine, have also been identified as a possible contributing factor.
- An infectious disease that affects a part of the brain (hypothalamus)
- Other causes include excessive alcohol intake, sleep deprivation, depression, and mood disorders.
However, these speculations have not been proven yet.
What is Kleine Levin syndrome?
Kleine Levin syndrome (KLS) is a rare neurological disorder characterized by episodes of the excessive need for sleep that occur weeks or months apart. It is more common in young boys. During episodes, sufferers often require more than 15 hours of sleep per day, hence it is also called sleeping beauty syndrome. The disorder may occur in younger children as well as adults. At the onset of an episode, the person becomes progressively drowsy and sleeps for most of the day and night, at times waking only to eat or use the bathroom. Each episode lasts days, weeks, or even months during which time all usual daily activities cease. People are unable to care for themselves or attend school or work. In between episodes, people with KLS seem to be in perfect health with no evidence of behavioral or physical dysfunction. Episodes of KLS may continue for ten years or more. Other common signs and symptoms include:
- Altered behavior
- Reduced understanding of the world
- People experiencing KLS may consume any available food, even foods they may typically not eat, sometimes leading to weight gain after episodes
- They may be typical to be irritable or confused. They seem to lack emotion or entirely seem to "not care" (apathy)
- Easily become disoriented to the time and location
- Hallucinations or feelings of losing touch with reality, feeling like they are living a dream
- Sensitive to light and noise
- Two-thirds of people experiencing KLS are observed to have communication disturbances, such as being too tired to communicate, having difficulty finding words, or having slurred speech.
- Around 50% of people with KLS exhibit abnormally increased sex drive and maybe observed engaging in disinhibited or inappropriate behaviors, such as fondling oneself, lack of concern with body exposure, or unwanted sexual advances.
Is Kleine Levin Syndrome a treatable condition?
There is no definitive treatment for Kleine Levin syndrome (KLS), the only way is to wait and watch as symptoms may subside slowly. However, a few treatments are used in case symptoms are worsening.
- Stimulant pills, including Amphetamines, Methylphenidate, and Modafinil, are used to treat sleepiness but may increase irritability and will not improve cognitive abnormalities.
- Lithium therapy: In some cases, lithium and/or carbamazepine may be prescribed for managing KLS. According to the National Institute of Neurological Disorders and Stroke, there are cases where lithium therapy has been effective in preventing further KLS episodes.
- Antiepileptic medications: Some individuals have experienced an improvement in symptoms while taking phenytoin, a medication used to treat seizures.
- Due to the similarities between KLS and other mood-related disorders, such as depression, post-traumatic stress disorder (PTSD), and bipolar disorder, mood stabilizers are sometimes prescribed with varying results and levels of effectiveness.
What is the outlook of patients with Kleine Levin Syndrome?
The condition spontaneously resolves. There is usually a decrease in episodes’ intensity and frequency over a period of 8 to 12 years. The patient is considered to be cured if no symptoms are observed for the previous 6 years. Usually, young or old patients and those who experience hypersexuality tend to have a more severe course. Patients who initially have frequent attacks generally see the disease cease earlier than others.