Sleeping Beauty Syndrome: Stuck in a Sleep Spell

Most of us have had mornings when the alarm goes off, and we feel like not getting out of bed. The temptation to stay wrapped in cozy blankets for the rest of the day is at its peak, especially during winter. Those few extra minutes of sleep can feel like pure bliss. Eventually, we overcome the urge to sleep, wake up, and get on with our daily activities.

But did you know there are people who can sleep for an unusually long time—not because they don’t want to, but because they simply can’t wake up? They suffer from what is called Sleeping Beauty Syndrome, also known as Kleine-Levin Syndrome (KLS).

What is the Sleeping Beauty Syndrome?

It is a rare disorder characterized by repeated episodes of excessive sleep ranging from 15 to 22 hours per day, accompanied by symptoms like confusion, derealization, slowness, apathy, post-episode loss of memory, excessive eating, and irritability, which can last for a few days to many weeks. Patients experience a period of normal sleep and behavior between the episodes. ^[1]

What is the Cause?

The exact reason why KLS occurs is still unclear. But there are possibilities that it can be triggered because of:

• Physical trauma like head injury

• Infections such as flu, fever, and cold

• Toxins

• Autoimmunity—the body attacking its own cells

• Psychological factors

• Abnormalities in the neurotransmitters (brain chemicals)

• Genetics

• Sleep deprivation

• Alcohol use

• Menstruation ^[2,3]

What are the Symptoms?

One of the hallmark symptoms of KLS that the patient complains of is excessive sleepiness, also called hypersomnia. Other symptoms that can occur along with this include:

• Eating compulsively in large amounts (hyperphagia)

• Increased sexual drive (hypersexuality)

• Dreamlike state (derealization)

• Verbal outbursts

• Transient depression

• Anxiety

• Reduced social interaction

• Migraine headaches

• Difficulty in communication, concentration, and memory ^[3]

The symptoms can appear from childhood to adulthood, ^[4] but it is most commonly seen in the male adolescent population. Since it is a rare disease, it is often misdiagnosed, delaying appropriate treatment. Accurate diagnosis can be challenging due to the lack of familiarity with the condition and overlapping symptoms with other neurological or psychiatric disorders.

To reach a proper conclusion, other sleep disorders like narcolepsy, medication or substance use, and psychiatric or neurological illnesses must be ruled out through thorough examinations. Electroencephalography (EEG) studies, polysomnography (PSG) studies, brain imaging, and cerebrospinal fluid (CSF) studies are also conducted as part of the diagnostic process to help confirm the condition. ^[5]

Treatment and Care

The episodes can resolve on their own, and long-term complications of untreated KLS are not known. However, it is always better to consult a physician or healthcare provider in case you experience any symptoms of KLS.

According to an opinion statement by Dr. Oliver Sum-Ping and Dr. Christian Guilleminault ^[6], after arriving at a diagnosis of Kleine-Levin Syndrome, management is primarily supportive.

• Both patients and their families must be educated about KLS to understand the condition better.

• During the episodes, patients should be allowed to rest under the supervision of a caregiver.

• The caregiver must also pay attention to the patient’s mood and eating habits during the episode.

• Patients must not be allowed to drive or operate heavy machinery during the episodes.

• In between the episodes, avoid alcohol and maintain a regular sleep-wake cycle.

While pharmacological therapy may not always be necessary, sometimes targeted symptomatic therapy can be considered beneficial to patients in severe cases. Drugs like modafinil, amantadine, risperidone, and lithium may be used. ^[3],[6] Any medication should not be taken without a doctor’s prescription, as side effects are possible.

MedBound Times reached out to Dr. Abhinav Singh, MD, MPH, FAASM, Sleep Physician, Medical Director—Indiana Sleep Center, to share his outlook on Sleeping Beauty Syndrome.

Conclusion

KLS, or Sleeping Beauty Syndrome is rare, and its diagnosis can be delayed due to its similarity to other disorders. It is crucial that awareness about KLS is raised so that an accurate diagnosis and proper treatment can be provided to improve the quality of their lives.

References

1. Arnulf, I., E. Groos, and P. Dodet. "Kleine–Levin syndrome: A neuropsychiatric disorder." Revue neurologique 174, no. 4 (2018): 216-227.https://www.sciencedirect.com/science/article/abs/pii/S0035378718300031?vi%3Dihub (Accessed on 07 January 2025)

2. AlShareef, Saad Mohammed, Richard Mark Smith, and Ahmed Salem BaHammam. "Kleine-Levin syndrome: clues to aetiology." Sleep and Breathing 22, no. 3 (2018): 613-623. https://pmc.ncbi.nlm.nih.gov/articles/PMC6133116/ (Accessed on 07 January 2025)

3. Miglis, Mitchell G., and Christian Guilleminault. "Kleine-Levin syndrome: a review." Nature and science of sleep (2014): 19-26.

   https://pmc.ncbi.nlm.nih.gov/articles/PMC3901778/(Accessed on 07 January 2025)

4. https://rarediseases.info.nih.gov/diseases/3117/kleine-levin-syndrome (Accessed on 07 January 2025)

5. Shah, Farhan, and Vikas Gupta. "Kleine-Levin Syndrome (KLS)." In StatPearls [Internet]. StatPearls Publishing, 2023. https://www.ncbi.nlm.nih.gov/sites/books/NBK568756/ (Accessed on 07 January 2025)

6. Sum-Ping, Oliver, and Christian Guilleminault. "Kleine-Levin Syndrome." Current treatment options in neurology 18 (2016): 1-9.

   https://link.springer.com/article/10.1007/s11940-016-0409-2 (Accessed on 07 January 2025)

By Dr. Nethra Suryanarayanan