About familial hibernation syndrome

What is familial hibernation syndrome?

Kleine-Levin syndrome is a rare disorder characterized by the need for excessive amounts of sleep (hypersomnolence), (i.e., up to 20 hours a day); excessive food intake (compulsive hyperphagia); and behavioral changes such as an abnormally uninhibited sexual drive. The disorder primarily affects adolescent males. When awake, affected individuals may exhibit irritability, lack of energy (lethargy), and/or lack of emotions (apathy). They may also appear confused (disoriented) and experience hallucinations. Symptoms of Kleine-Levin syndrome are cyclical. An affected individual may go for weeks or months without experiencing symptoms. When present, symptoms may persist for days to weeks. In some cases, the symptoms associated with Kleine-Levin syndrome eventually disappear with advancing age. However, episodes may recur later during life.

The exact cause of Kleine-Levin syndrome is not known. However, researchers believe that in some cases, hereditary factors may cause some individuals to have a genetic predisposition to developing the disorder. It is thought that symptoms of Kleine-Levin syndrome may be related to malfunction of the portion of the brain that helps to regulate functions such as sleep, appetite, and body temperature (hypothalamus). Some researchers speculate that Kleine-Levin syndrome may be an autoimmune disorder.

What are the symptoms for familial hibernation syndrome?

People living with KLS may not experience symptoms every day. In fact, affected individuals typically don’t have any symptoms between episodes. When symptoms do appear, they can last a few days, weeks, or even months.

Common symptoms include extreme sleepiness. There may be a strong desire to go to bed and trouble getting up in the morning.

During an episode, it’s not uncommon to sleep up to 20 hours a day. People living with KLS may get up to use the bathroom and eat, then go back to sleep.

Fatigue can be so severe that people with KLS are bedridden until an episode passes. This takes time and energy away from family, friends, and personal obligations.

Episodes can also trigger other symptoms, such as:

  • hallucinations
  • disorientation
  • irritability
  • childish behavior
  • increased appetite
  • excessive sex drive

This may result from reduced blood flow to parts of the brain during an episode.

KLS is an unpredictable condition. Episodes can recur suddenly and without warning weeks, months, or years later.

Most people resume normal activity after an episode without any behavioral or physical dysfunction. However, they may have little memory of what happened during their episode.

What are the causes for familial hibernation syndrome?

The exact cause of KLS is unknown, but some doctors believe certain factors can increase your risk for this condition.

What are the treatments for familial hibernation syndrome?

Several medications are available to help you manage symptoms. This may help reduce the duration of an episode and prevent future episodes.

Stimulant pills are an option for treating KLS. Although they can cause irritability, these medications promote wakefulness and are effective at reducing sleepiness.

Options include methylphenidate (Concerta) and modafinil (Provigil).

Medications that treat mood disorders may also be beneficial. For example, lithium (Lithane) and carbamazepine (Tegretol) — which are commonly used to treat bipolar disorder — may relieve symptoms of KLS.

What are the risk factors for familial hibernation syndrome?

For example, KLS may arise from an injury in the hypothalamus, the part of the brain that controls sleep, appetite, and body temperature. A possible injury could be falling and hitting your head, although more research is needed to confirm this link.

Some people develop KLS after an infection like the flu. This has led some researchers to believe KLS may be a type of autoimmune disorder. An autoimmune disease is when the body’s immune system attacks its own healthy tissue.

Some incidents of KLS may also be genetic. There are cases where the disorder affects more than one person in a family.

Is there a cure/medications for familial hibernation syndrome?

Medications may include: methylphenidate (Concerta) and modafinil (Provigil), and medications that treat mood disordersl. For example, lithium (Lithane) and carbamazepine (Tegretol) 

Your individual outlook depends on the severity of your symptoms. Symptoms generally decrease with each passing year, leading episodes to become more mild and infrequent.

Although KLS symptoms can appear and disappear over the course of many years, its’s possible for your symptoms to disappear one day and never return. People with KLS are typically considered to be “cured” when they haven’t had an episode for six or moreTrusted Source years.

Because episodes of KLS can occur over a span of 10 years or more, living with this condition can have a tremendous impact on your life. It can interfere with your ability to work, go to school, and cultivate relationships with friends and family.

It can also trigger anxiety and depression, primarily because you don’t know when an episode will occur or how long an episode will last.

If you experience increased hunger and overeat during episodes, you may be more likely to experience weight gain.

Talk to your doctor about how to best identify an approaching episode. Tiredness and sleepiness caused by KLS can occur suddenly. You could injure yourself or others if an episode occurs while operating a motor vehicle or machinery. By learning how to identify an impending episode, it’s possible to remove yourself from a potentially dangerous situation.

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