Complete Guide To Kleine-Levin Syndrome

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Neurological syndromes are more difficult to classify than their physically-oriented cousins – at least, in most cases.

Syndromes that drastically change a person’s behavior can bring loved ones and family members a significant amount of frustration.

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Without proper a diagnosis, it’s difficult to tell whether the behavior they’re seeing is a loved one acting out or a result of uncontrollable factors.

Kleine-Levin Syndrome is one such behavioral syndrome. If you think someone you love – or you, yourself – has this syndrome, then you’ve come to the right place.

Here you’ll find a complete exploration of Kleine-Levin Syndrome.

While this guide does not and should not stand in for a professional diagnosis, you should come away from it with a better understanding of what this syndrome looks like and what you can do in order to treat it effectively.

What is Kleine-Levin Syndrome?

Kleine-Levin Syndrome was originally named for the two men who discovered it, Willi Kleine and Max Levin.

These two figures first recorded evidence of the syndrome in the early 20th century. However, Kleine-Levin Syndrome was not added to the International Classification of Sleep Disorders until 1990.

Assumptions

If you’re witnessing – or believe you’re witnessing – symptoms of this syndrome for the first time, you may have initially brushed it off.

Most assume they’re expressions of general adolescence, as it most frequently appears in teenagers.

You can best differentiate between the typical teenage need for growth and Kleine-Levin Syndrome by keeping an eye out for the to-be mentioned behaviors.

The syndrome also expresses itself in extremes, dramatically changing a victim’s behavior as its symptoms express themselves further.

The Nature of the Syndrome

Otherwise referred to as “hypersomnia,” Kleine-Levin syndrome causes frequent and long-lasting episodes of sleep.

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This doesn’t mean that a person with Klein Levin syndrome sleeps for a mere twelve hours a day. Kleine-Levin syndrome instead puts sufferers to sleep for up to 20 hours a day.

Kleine-Levin syndrome also manifests in bursts. This means that sufferers – primarily adolescent young men – will sleep in excess for a few days at a time or even a few weeks.

After that period of time has passed, their behavior should return to normal. However, people who suffer from Kleine-Levin Syndrome frequently relapse and will often return to their excessive behavior.

The effects of Kleine-Levin Syndrome will decrease with age. Kleine-Levin Syndrome frequently pairs with hyperphagia, or excessive food intake, as well as a number of other heightened urges (which will be addressed).

People who suffer from Kleine-Levin Syndrome have also reported feeling spacey or disconnected from the world around them.

Is it Common?

All that said, Kleine-Levin Syndrome is a particularly rare syndrome. Its rarity may be attributed to how similar it is to the average behavior of many teenagers.

After all, the syndrome wasn’t classified as an actual medical concern until the 1990s, even though it was discovered nearly 100 years prior.

Diagnosing Kleine-Levin Syndrome

As has been mentioned, Kleine-Levin Syndrome primarily manifests in young people, with 70 percent of its diagnosed victims being teenage boys. As such, it’s difficult to separate the teenage need for sleep from expressions of Kleine-Levin Syndrome.

However, it’s less the sleepiness that indicates this syndrome, and more the entire shift in demeanor that clues people into its severity.

Previously energetic young people have been noted as becoming apathetic, lethargic, disoriented, and hypersexual.

Even as these changes in behavior manifest, it still takes medical practitioners four years to diagnose Kleine-Levin Syndrome with any degree of confidence.

kleine levin syndrome

Given the time of Kleine-Levin Syndrome’s onset – usually when a young person enters puberty, but occasionally later – that four year period could see not only significant transformations in a young person’s body but the phasing out of Kleine-Levin Syndrome altogether.

Causes of Kleine-Levin Syndrome

Trying to explore the potential causes of Kleine-Levin Syndrome is both inconclusive and complex. This definitely attributes to how frustrated and confused many people feel about dealing with this condition.

The syndrome is said to have a notable genetic component, suggesting that it is passed from parent to child like a number of other non-physical syndromes.

However, a number of doctors have chosen to report that Kleine-Levin Syndrome frequently appears in Jewish families and among Jewish young men. According to one paper, “the incidence reported in Israel is [in]proportionally high.”

Has this singled out of a specific racial demographic that impacted the medical field’s understanding of Kleine-Levin Syndrome? That hasn’t been elaborated on.

However, besides that questionable lead, and suggestions of a genetic predisposition and transferability, there is no known cause of Kleine-Levin Syndrome.

Symptoms of Kleine-Levin Syndrome

Kleine-Levin’s alternative label – “Sleeping Beauty Syndrome” – gives you some idea of its primary symptom.

If you notice that either you or a loved one can go three days to several weeks sleeping 20 or more hours a day, then you may have Kleine-Levin Syndrome.

This is not the only symptom, however. Others include:

  • Disassociation From Reality: People with Kleine-Levin Syndrome have reported feeling as though they were no longer connected to the real world around them. Some have even experienced hallucinations or confusion, equal to that expressed by Alzheimer’s victims. While this confusion is not permanent, it will limit the person’s ability to function as a part of a family unit or society until the Kleine-Levin’s episode has passed.
  • Abnormal Irritability or Aggression: Hypersensitivity is another symptom of Kleine-Levin Syndrome. When a person becomes over-sensitized to light, sound, or other stimuli, then it’s possible – even likely – that they’ll express abnormal amounts of irritability, aggression, or anger.
  • Binge-eating: As has been mentioned, people with Kleine-Levin Syndrome pair their excessive sleeping habits with excessive eating. This eating exceeds the amount the sufferer would ever normally engage in. This symptom may be confused with teenage growing pains or hormonal shifts.
  • Hypersexuality: People with Kleine-Levin Syndrome, men, in particular, have reported hypersexual urges that result in excessive masturbation, the enacting of unwanted sexual advances, and so on.
  • Exhibits Symptoms in Cycles: Above all else, a person most likely has Kleine-Levin Syndrome if they exhibit the aforementioned behaviors in pairs and cycles. Expressions of Kleine-Levin Syndrome typically last between a few days to two weeks. After that, it is usually 3.5 months before a person re-exhibits symptoms.

Note that Kleine-Levin’s primary symptom – excessive amounts of sleepneeds to be paired with at least one of the aforementioned behaviors in order to be considered a neurological disorder.

kleine levin syndrome

Who Gets Kleine-Levin Syndrome?

Men, more so than women, are diagnosed with Kleine-Levin’s Syndrome. This diagnosis usually comes when the person in question is in their late childhood to early teenage years.

Again, it can take up to four years for medical professionals to diagnose Kleine-Levin’s syndrome in a person. This is in part because the syndrome manifests at the same time as puberty.

Puberty and Kleine-Levin Syndrome bring about many of the same behaviors in young people:

  • Mood swings and changes in behavior.
  • Hypersexuality.
  • Lethargy.
  • Binge-eating.

However, it’s the cycled nature of Kleine-Levin Syndrome that’ll give the syndrome away as a neurological disorder, rather than as teenage rebellion and growth.

This syndrome also impacts fewer than 200,000 patients in the United States alone. Considering the age of sufferers, it’s up to their parents to seek out treatment for them, which may contribute to the loose understanding of this syndrome.

After all, few children and teenagers can seek medical attention personally and some parents may overlook the symptoms.

This video explains more about Kleine-Levin Syndrome.

Kleine-Levin Syndrome Treatment Options

Without knowing Kleine-Levin Syndrome’s cause, identifying a cure has proven difficult. It should be stated up front that, as of 2019, Kleine-Levin Syndrome does not have a medical cure.

There are ways to treat the syndrome, however, once it’s been appropriately diagnosed in a person. These treatments include:

Time

Often, those individuals who suffer from Kleine-Levin Syndrome will “grow out” of the syndrome.

This could be attributed to the improved development of the brain during the ages in which Kleine-Levin Syndrome typically makes itself known. However, that claim is entirely speculation.

As such, one of the best Kleine-Levin syndrome treatments is patience.

By age 20, the majority of men who expressed Kleine-Levin Syndrome in their youth will no longer experience the syndrome’s trademark cycles.

However, if onset occurs after the age of 20, then those individuals may take longer to grow out of the syndrome’s symptoms than their younger counterparts.

Medications

It’s also possible to treat Kleine-Levin Syndrome’s symptoms with various forms of medications. Medications that promote wakefulness typically work to keep sufferers awake during the average day.

Modafinil, for example, has been prescribed, but this tends to exasperate the behavioral issues this syndrome already brings out.

Lithium has also been said to decrease the amount of time before an episode of Kleine-Levin Syndrome passes. Even still, it works between 25 and 60 percent of the time, as opposed to always. As such, don’t rely on this medication to prevent your or a loved one’s episodes.

Your doctor may also prescribe you anti-psychotics to help overcome any hallucinations you may be seeing.

Benzodiazepines also come in handy to help reduce the amount of anxiety a person feels while experiencing the symptoms of Kleine-Levin. Sexual suppressants also come in handy when attempting to manage hypersexuality.

Amphetamines

Among more extreme treatments come amphetamines. Amphetamines have been said to help 40 percent of the people with Kleine-Levin Syndrome who have taken them.

kleine levin syndrome

People on amphetamines who would normally sleep 20 hours a day, as a result of the syndrome, report feeling more wakeful, better rested, and are typically able to function with some modicum of normality, even if experiencing an episode.

Therapy

Those individuals with Kleine-Levin Syndrome may also benefit from attending therapy before or once they’ve been diagnosed with the syndrome.

While therapy cannot directly treat a neurological disorder, speaking with a registered therapist can help a number of sufferers overcome the feelings of disassociation, a symptom often reported during an episode.

It can also help them develop techniques to control and monitor their own behavior as they contend with the syndrome.

How Long Does Kleine-Levin Syndrome Last?

Kleine-Levin Syndrome is particularly long-lasting, though it rarely exists throughout a person’s entire life.

After the syndrome first manifests, episodes will spike. Then, over the course of the next eight to twelve years, episodes will decrease in intensity and frequency, until they no longer occur at all.

If pairing time with treatment, some people could see the symptoms disappearing more quickly.

Here’s a video showing what it’s like to have Kleine-Levin syndrome.

All in All, What Do We Know?

In summary, we can determine:

  • Klein-Levin Syndrome is a syndrome that primarily manifests in young men, but which can appear in any demographic.
  • The syndrome expresses itself through excessive sleepinesses, as well as mood changes, hypersexuality, and binge-eating.
  • There is no definitive medical cure for Kleine-Levin Syndrome, but there are ways to treat the range of manifested symptoms.
  • One of the best treatments for Kleine-Levin Syndrome is time, as the syndrome’s episodes will grow less frequent from their initial expression over the course of eight to twelve years.

Again, while this guide does not and should not serve as a diagnostic tool for you or a loved one, you should absolutely use the information here to your advantage.

If you notice that you or a loved one is sleeping far more than usual, has exhibited a change in personality, or is exhibiting any of the other symptoms touched on above, then you need to go to a doctor’s office.

Only a medical professional can diagnose you with Kleine-Levin Syndrome. Once you’ve visited a doctor’s office, you can receive a prescription for any of the medications that have been reported to help shorten or ease people through Kleine-Levin episodes.

Most importantly: don’t fret too much if you or a loved one experiences the symptoms of Kleine-Levin Syndrome.

While this syndrome is a neurological one, the ability of previous suffers to grow past their previous behavior suggests that, with or without medical treatment, they will be able to maintain a healthy and wholesome life once their experience with the syndrome has passed.


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