Kleine-Levin Syndrome also referred to as “sleeping beauty syndrome” is a very uncommon sleep disorder. The primary characteristic is that people sleep for abnormally long periods of time.
A majority of the time for those who have this sleep disorder will only wake up to use the restroom or to go eat some food. However, when they are awake they are not fully alert.
If you or someone else has this sleep disorder, you might be frustrated as to how little information there is available.
I must point out that this article will not answer all of the questions that you may have. However, this article will provide a general summary and some handy information that you may not have known before.
In this post, you will find out more about Kleine-Levin Syndrome and other interesting facts about this rare sleep disorder.
What Number Of People Have This Sleep Disorder?
There is an estimation that one person in every million has this sleep disorder. For example, in the United States that would amount to a few hundred people.
This happens a lot more in men than it does in women. In fact, 70 to 90% of all cases have been reported in men. This sleep disorder starts to develop in one’s adolescence, but can happen at any point in your life.
Some aspects can be genetic, as there is a higher rate for Jewish boys to have this disorder.
Kleine-Levin Syndrome is so rare that it is most likely that your doctor has never encountered it before. After reading some individual stores, there is either a misdiagnosis or it is a defeating process to arrive at a correct diagnosis.
Since this usually begins during adolescence, most would form their first impression as nothing more than ordinary teenage behavioral patterns. However, if you observe closely at the sleeping patterns of teenagers, you will discover that these sleep patterns are far from normal.
The other aspect is that there is not a lot of large scale research that has been conducted about this sleep disorder. The research that has been done are either small scale programs or individual case studies.
To no surprise, the majority of research papers end by stating that either larger scale trials or further research are needed before drawing a definitive conclusion. This was a statement that surprised me as well.
How Much Time Do People With Kleine-Levin Syndrome Sleep For?
Those who have this sleep disorder can sleep up to 20 hours everyday. These episodes of sleep can have duration from a few days to weeks to months at a time.
There can be either a short or long gap between each episode that can range from weeks for a short gap to months and years for a long gap. There are people who suffer from this disorder for as long as 10 to 12 years.
According to medical terms, it can be seen as reoccurring hypersomnia. Yet, an easier way to put it is that hypersomnia relates more to feeling sleepy, tired, and prone to falling asleep throughout the day.
Those who have hypersomnia can sleep for numerous hours at night and can potentially take long naps throughout the day. They can also find themselves going to sleep at different times of the day. Those who have Kleine-Levin Syndrome will usually stay asleep for the entire day.
The main symptom is the tendency to sleep between 16 to 20 hours everyday. These sleep periods can last for days or weeks.
According to the International Classification of Sleep Disorders 3rd Edition, a normal sleep episode lasts on average for 10 days. These episodes are also not isolated events, yet reoccur a minimum of one time each year.
The episodes usually begin without any warning signs, but in some cases you can experience some flu type symptoms at the start.
The common symptoms include:
- Amnesia – There will be a period when you cannot remember all of the actions that you performed during each of the sleep episodes.
- Mood Swings – You can feel moody, depressed, irritable, or grumpy in the duration and in between each of the episodes. There is a presumption that this is a result of the disorder rather than being a cause.
- Hyper-Sexuality – You may feel as though that you have an usually high and uncontrolled drive for sex.
- Unusual Speech Patterns – Your speech can be affected and the outcome can be speech that can sound slurred or childish.
- Disorientation – There are people who have reported that they feel as though they are in a dream-like, vague, dazed, or confused state when they are awake. The person may also have visual or audio hallucinations. Friends, family, roommates, and those who tend to you can find your behavior either childish, inappropriate, or confusing. They can also have the idea that you are showing signs of apathy or lethargy.
- Larger Appetite and Overeating – You may feel an overwhelming need to eat any food that is available and this often results in unwanted weight gain.
The belief in the beginning was that most of these symptoms were experienced by those who had Kleine-Levin Syndrome and this shaped the medical diagnosis.
Although, in more recent studies it is suggested that not every patient experiences all of these symptoms. In a small survey, it was discovered that only 50% of the subjects experienced hyper-sexuality and only 75% of the subjects experienced the larger appetite/overeating symptom.
There are not a lot of theories that are relevant to the likely cause of Kleine-Levin Syndrome. One particular theory that has expert support suggests that the cause could potentially be a malfunction in the hypothalamus portion of the brain.
The hypothalamus gland is a portion of the brain that controls sleep and appetite, which correlates to the sleep problem and the related overeating symptom that was stated in the previous section.
However, as mentioned previously this is a very uncommon sleep disorder. Due to that fact, there is a restricted amount of research material that has been completed in order to find the true cause.
A study that was done in 2004 reports that 89% of the people recalled when a certain activity or illness that occurred before entering their first sleep episode.
These figures are the percentage of people who have experienced each of these events and some of these people remember experiencing more than one.
- Usage of marijuana (6%)
- Injuries to the head (9%)
- Traveling (10%)
- Physical labor (19%)
- Abnormal stress (20%)
- Sleep deprivation (22%)
- Alcohol consumption (23%)
- Infections (72%, 25% of patients have reported flu or cold type symptoms with some including fevers)
There seems to be support of the theory that some of the infection symptoms are the possible causes prior to the first sleep episode.
The Challenge Of Receiving A Diagnosis
This is a rather difficult sleep disorder to diagnosis. It is normally the case that other potential explanations for your symptoms have to eliminated first, then a diagnosis can be reached.
A medical professional has to examine your medical history and any symptoms in order to rule out any other sleep disorder and medical conditions.
Examples of sleep disorders would be epilepsy, hypersomnia, and narcolepsy. Examples of medical conditions are depression and bipolar disorder.
It is because of these reasons that the majority of diagnoses of Kleine-Levin Syndrome can only be established after a second lengthy sleep episode. It can disappointing to some because obtaining a diagnosis can take a while.
There has been some research that has been conducted in order to find out if modern methods such as MRI scans can assist in the diagnosis. However, these scans have yet to be proven conclusive.
This video explains what an MRI scan is:
A Swedish study utilized a single photon emission computed tomography to observe the brain of 24 patients that have Kleine-Levin Syndrome.
Even though 48% of the patients displayed peculiarities, the other 52% did not. The researchers could not recommended this method as a definite way of diagnosing Kline-Levin Syndrome.
Although, this will provide additional hints to medical professionals.
Those with this sleep disorder can appear to behave normal between each of their sleep episodes, which makes providing a diagnosis a difficult task.
Regrettably, there are no effective treatments for Kleine-Levin Syndrome. Furthermore, any treatments that are suggested are only reinforced by limited research and trial. The two potential treatments are:
Stimulant medications such as modafinil, methylphenidate, and amphetamines are periodically prescribed to patients in order to delay their sleepiness.
Nevertheless, these medications do not improve the feeling of disorientation that some people experience and can promote irritability. In addition, stimulants such as these do not have any effect on the underlying sleep issue.
Generally speaking, your doctor can possibly offer you a suggestion that you should be cared for in your home, rather than in a hospital. Roommates, partners, relatives, and home caretakers should support you during your lengthy sleep episodes.
I recommend that all of the people who are present in your social network practice good sleep hygiene. They should motivate you to make an attempt to maintain consistent sleep patterns as much as you can given the nature of this disorder.
There was a trial done on three people that suggests that consuming lithium medication can possibly decrease the frequency and length of each sleep episode. It can also lessen the other symptoms that are related to the behavior that was displayed.
Nonetheless, it does not stop the sleep episodes from happening and means that lithium medication is not a cure. The researchers came to this conclusion:
“In KLS with a high frequency of episodes and severe biological changes lithium may become a treatment option”.
Waking the person up
It is feasible to wake a person up during one their sleep episodes. Yet, they are likely to experience the disorientated, childlike and irritable symptoms that were mentioned earlier.
If they do manage to wake up. The will not be able to perform many actions other than the essentials such as using the restroom or eating some food. Other actions such as driving or going to school are a far stretch.
Kleine-Levin Syndrome is a very rare sleep disorder. This sleep disorder only affects a few hundred people in the United States. The primary symptom is sleeping for abnormally long periods of time between 16 to 20 hours a day.
A person’s life is somewhat paused in the duration of these lengthy sleep episodes. Normal activities such as going to school, socializing and driving can be challenging tasks.
Do you know anybody who has this sleep disorder?
How does this sleep disorder affect you?
What are your thoughts on Kleine-Levin Syndrome?
Please feel free to share your thoughts in the comments below.
Photo Credit: Pexels, Pixabay and Unsplash