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Child Neurology Foundation Disorder Directory Narcolepsy

Authors: Hillary Eichelberger, MD
NYU Grossman School of Medicine   

Alison L. Christy, MD, PhD
Providence Pediatric Neurology at St. Vincent Medical Center—Portland, Oregon

Reviewed: January 2023

SUMMARY

Narcolepsy is a rare sleep disorder. It occurs more often in older adults than in children. In narcolepsy, the brain cannot appropriately regulate: 

  • Sleep  
  • Wakefulness 

This causes severe daytime sleepiness.  

Medication can treat the symptoms of narcolepsy. It can:  

  • Improve sleep at night  
  • Increase wakefulness during the day

Behavioral changes may also help some people with narcolepsy.  

Narcolepsy is a lifelong disease with no cure.

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Disorder Overview

DESCRIPTION

Narcolepsy is a sleep disorder. It causes daytime sleepiness, as well as other specific symptoms including:  

  • Hallucinations 
  • Sleep paralysis 
  • Sudden muscle weakness  

Doctors classify narcolepsy into two types. They are:

Narcolepsy type 1.

  • This includes cataplexy.  
  • There may be low levels of a neurotransmitter called orexin. This is found in cerebrospinal fluid.
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Narcolepsy type 2.

  • The patient is excessively sleepy during the day. This is diagnosed by specific testing.  
  • There is no cataplexy or low orexin. 
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SIGNS AND SYMPTOMS

Both types of narcolepsy can cause extreme daytime sleepiness. The patient may fall asleep during various daytime activities, even at dangerous times. Some people call these sleep attacks. This is because: 

  • The onset of sleep is fast. 
  • It is difficult to fight the urge to sleep.  

Daytime tiredness can cause behavioral problems, especially in children. Problems can include:  

  • Irritability 
  • Hyperactivity 
  • Aggression 

Fatigue can cause:  

  • Forgetfulness  
  • Difficulty concentrating in school  

Children with narcolepsy have an increased risk for:  

  • Depression 
  • Obesity 
  • Early puberty  

Other specific symptoms include the following:

Sleep paralysis.

  • A person with sleep paralysis is awake and aware. However, they are unable to move their entire body. They are also unable to speak.  
  • Paralysis usually occurs when falling asleep or waking. It can last up to a few minutes. It can be very upsetting. It may be difficult for a child to describe.  
  • Sleep paralysis can also happen to a person without narcolepsy.
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Sleep-related hallucinations.

  • A person may see, hear, or feel something that is not present. Hallucinations are intense and brief. 
  • These hallucinations usually happen just before falling asleep (hypnogogic) or just after waking up (hypnopompic). This can be a very scary experience.  
  • Sleep-related hallucinations can also happen to a person without narcolepsy.
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Cataplexy.

  • A person with cataplexy can have a sudden loss of muscle tone when feeling a strong emotion. For example, it can be triggered by fear, stress, excitement, anger, or laughter.  
  • Muscle weakness may involve the arms and legs. It can cause the falling or dropping of objects. It can also cause a person to fall to the ground. 
  • Cataplexy can cause isolated facial droop or head drop. In young children, the muscles of the face may be affected. This can cause eyelid drooping or a change in facial expression. Commonly, the tongue lolls out of the mouth.  
  • The child is awake and aware. The symptoms usually only last for a few seconds.
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Disrupted sleep.

  • People with narcolepsy often have difficulty staying asleep overnight.  
  • They typically fall asleep at the beginning of the night. However, they wake up frequently and have difficulty falling back to sleep.
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CAUSES

Narcolepsy is caused by low levels of a neurotransmitter called orexin (sometimes called hypocretin). This is found in the brain. The disease is thought to occur when the immune system destroys the brain cells that produce orexin.  

In rare cases, narcolepsy may be caused by: 

Genetic factors may increase the risk of narcolepsy. Almost all patients with narcolepsy type 1 have a variation in a specific gene. The gene is called HLA-DQB1*0602. However, this genetic variation does not cause narcolepsy. Many people with this genetic variation will never have narcolepsy.

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LABORATORY INVESTIGATIONS

A sleep doctor will go over a detailed history of sleep habits and symptoms of concern with children and their caregivers. They will also perform a physical exam.  Tests may include:

  • A polysomnogram (PSG, or overnight sleep study). A PSG looks for other sleep disorders, like sleep apnea, that can cause similar symptoms to narcolepsy. The electrical activity of the brain is measured along with: 
    • Breathing 
    • Heart rate 
    • Other vital signs 
  • A multiple sleep latency test (MSLT). In an MSLT, a person takes several naps. This tests to see how quickly they fall asleep. 
  • Cerebrospinal fluid testing. A small amount of fluid is collected from around the spinal cord. The amount of the neurotransmitter orexin is measured.

TREATMENT AND THERAPIES

Treatment for narcolepsy includes both behavioral changes and medication. The following can help: 

  • Changes in sleep habits, diet, and exercise. A sleep doctor will encourage these to improve:  
    • Sleep at night  
    • Wakefulness during the day 
  • Medications to increase wakefulness (stimulants). These are often used to help with daytime symptoms.  
  • Visits with a psychologist. Some children with narcolepsy are also diagnosed with depression or anxiety. These mood disorders may improve with treatment for narcolepsy. It may be helpful to see a psychologist or psychiatrist to talk about other treatment options. 

It is important for a child’s school to know about their diagnosis. That way, they can best support the child.  

It is also important for teenagers and adults with narcolepsy to discuss driving safety.

OUTLOOK

Narcolepsy is a life-long disease. There is no cure. However, symptom severity tends to improve over time and with treatment.

Resources 

Narcolepsy Network 
Founded in 1986, Narcolepsy Network is a 501(c)(3), member-led community organization based in the U.S. that works to educate, empower, and connect people impacted by narcolepsy. Through the lens of advocacy, education, awareness, and support, Narcolepsy Network delivers programs and resources in the form of clinical updates and research, webinars, support groups, and advocacy opportunities. Narcolepsy Network also hosts an annual conference offering up-to-date information on clinical research, therapies, and lifestyle hacks, as well as networking and support. Connect with over 14,000 others affected by narcolepsy on the Narcolepsy Network private Facebook group. 

Project Sleep
Believing in the value of sleep, Project Sleep aims to improve public health by educating individuals about the importance of sleep health and sleep disorders. Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.

Wake Up Narcolepsy 
Wake Up Narcolepsy is a non-profit organization whose mission is to accelerate narcolepsy research, increase narcolepsy awareness, and educate and provide supportive services to people in the narcolepsy community. Wake Up Narcolepsy hosts a camp for families of children with narcolepsy, has access to online support groups, and provides Brown Bag Webinar Series and one day conferences. WUN also has annual fundraisers, including a Boston Marathon Team that support the advancement of narcolepsy research.

Publications

JCN: What Your Pediatric Neurologist Wants You to Know–Sleep 
Podcast from SAGE Neuroscience and Neurology/Journal of Child Neurology (JCN). JCN’s Residents and Fellows Board Director, Dr. Alison Christy, interviews Dr. Samiya Ahmed from Baylor College of Medicine in San Antonio, Texas on sleep.

Family Stories 

Narcolepsy Network presents narcolepsy patient stories to help educate members of the public about our disorder and to let people with narcolepsy know that they are not alone. Others are encouraged to submit their stories. 

Project Sleep’s Rising Voices program serves the dual purposes of fostering a new generation of patient-advocates spreading awareness while also empowering participants. The Rising Voices of Narcolepsy Story Sharing Series can be accessed on the Project Sleep YouTube playlist.

Child Neurology Foundation (CNF) solicits resources from the community to be included on this webpage through an application process. CNF reserves the right to remove entities at any time if information is deemed inappropriate or inconsistent with the mission, vision, and values of CNF. 

Research 

These are clinical trials that are recruiting or will be recruiting. Updates are made daily, so you are encouraged to check back frequently.   

ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. This is a resource provided by the U.S. National Library of Medicine (NLM), which is an institute within the National Institutes of Health (NIH). Listing a study does not mean it has been evaluated by the U.S. Federal Government. Please read the NLM disclaimerfor details.    

Before participating in a study, you are encouraged to talk to your health care provider and learn about the  risks and potential benefits.

For more information about participation in clinical trials, check out our education hub on the topic here

Information for research and clinical trials specific to Narcolepsy can be found on Project Sleep and Wake Up Narcolepsy websites.

The information in the CNF Child Neurology Disorder Directory is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. Content provided is for informational purposes only.  CNF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. 

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References

Babiker MO, Prasad M. Narcolepsy in children: a diagnostic and management approach. Pediatr Neurol. 2015 Jun;52(6):557-65. https://doi.org/10.1016/j.pediatrneurol.2015.02.020. Epub 2015 Mar 2. PMID: 25838042.  

Chung IH, Chin WC, Huang YS, Wang CH. Pediatric Narcolepsy—A Practical Review. Children (Basel). 2022 Jun 29;9(7):974. https://doi.org/10.3390/children9070974. PMID: 35883958; PMCID: PMC9320719. 

American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. 2014.   

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