Connect with others who understand.

sign up log in
About MyNarcolepsyTeam

Narcolepsy — An Overview

Updated on April 30, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Alison Channon

What Is Narcolepsy?

Narcolepsy is a neurological sleep disorder. In people with narcolepsy, the brain has trouble regulating the sleep cycle, resulting in disruptions of normal sleep and wakefulness patterns. The primary symptoms of narcolepsy are excessive daytime sleepiness and cataplexy — sudden, temporary loss of muscle tone. Narcolepsy is a chronic condition, meaning that it is usually lifelong, but it does not usually worsen with age and may improve over time. Narcolepsy is not contagious.

What Causes Narcolepsy?

Narcolepsy is caused by biological changes in the brain that interfere with the normal regulation of the sleep-wake cycle. Many cases of narcolepsy are associated with low levels of a brain chemical called hypocretin or orexin, which is necessary for regulating sleep. Research indicates that low hypocretin leads to the “sleep state instability” seen in people with narcolepsy, resulting in daytime sleepiness and disturbed nighttime sleep.

Many factors are believed to play a role in the development of narcolepsy. While narcolepsy is not directly passed down in families in a clear pattern, there are certain genetic variants associated with an increased risk for developing narcolepsy. However, not all people with higher-risk genes develop the sleep disorder. For this reason, most researchers believe that a combination of inherited and environmental factors likely lead some people to develop narcolepsy. Environmental factors may include age, endocrine disorders, and certain infections such as streptococcal pharyngitis, or strep throat.

Evidence suggests narcolepsy may be an autoimmune condition, like multiple sclerosis or lupus, and that hypocretin-producing brain cells (neurons) may be destroyed by immune system attacks.

In secondary narcolepsy, a rare type of narcolepsy, the sleep disorder develops after damage or injury to the brain. Causes of secondary narcolepsy may include brain tumors, head trauma, or multiple sclerosis.

Read more about causes and risk factors for narcolepsy.

The History of Narcolepsy

The first two mentions of narcolepsy in medical literature were published in 1877 and 1880. In 1877, C. Westphal, a German scientist, wrote about two individuals presenting symptoms of narcolepsy with cataplexy. Westphal described the episodes as “epileptic attacks” and noted the individuals’ sleep attacks. In 1880, French physician Jean-Baptiste-Edouard Gélineau first used the term narcolepsy (narcolepsie in French) to describe symptoms like cataplexy and sleep paralysis. The word narcolepsy comes from the Greek words narkē, meaning “numbness or stupor,” and lepsis, meaning "attack or seizure.” Gélineau was known in his time for treating epilepsy. While Westphal and Gélineau both described cataplexy, that term wasn’t introduced till 1902.

Early understandings of narcolepsy associated the condition with seizure disorders because of cataplexy episodes. Scientific understanding of narcolepsy and all sleep disorders expanded greatly when scientists identified rapid eye movement (REM) sleep in the early 1950s. Some of the earliest modern research into narcolepsy occurred at Stanford University in the early 1960s. During the 1960s and 1970s, researchers at Stanford helped establish sleep medicine as its own field and introduced sleep studies like the overnight polysomnogram and multiple sleep latency test (MSLT).

Research from Japan in the early 1980s opened the door to understanding a possible genetic cause of narcolepsy. Additional research in the next decade found a close association between narcolepsy and the HLA-DQB1*06:02 gene. In 1998, scientists discovered the relationship between hypocretin and narcolepsy. Identifying these two relationships has greatly expanded the scope of research into narcolepsy and its causes, and mechanisms.

How Common Is Narcolepsy?

Narcolepsy is a rare condition. It affects an estimated 135,000 to 200,000 Americans. It’s believed that about 1 in 2,000 people, or 0.05 percent, have narcolepsy. Actual numbers could be higher because of the number of individuals who haven’t been diagnosed or who have been misdiagnosed. Narcolepsy affects men and women and different ethnic groups equally.

What Are the Symptoms of Narcolepsy?

Excessive Daytime Sleepiness

Excessive daytime sleepiness (EDS) is a sensation of exhaustion throughout the day, no matter how much a person has slept at night. EDS is the primary symptom of narcolepsy and occurs in all types of the condition.

Cataplexy

Cataplexy is a sudden loss of muscle control, often caused by strong emotions. Cataplexy only occurs in type 1 narcolepsy, previously called narcolepsy with cataplexy. Cateplexy episodes can last for a few seconds to a few minutes. An episode can consist of mild symptoms like eyelid drooping or lead to a serious fall.

Sleep Paralysis

Sleep paralysis occurs when a person can’t speak or move either when waking up or falling asleep. Most sleep paralysis episodes only last a few seconds but can occasionally last longer.

Hallucinations

Vivid hallucinations can occur when a person with narcolepsy wakes up (hypnopompic hallucinations) and when they fall asleep (hypnagogic hallucinations). Hallucinations that occur in narcolepsy are similar to dreams that would occur during REM sleep, except they occur during a semi-awake state.

Disrupted Nighttime Sleep

Often, people with narcolepsy experience disrupted nighttime sleep, fragmented sleep, or insomnia. Individuals with narcolepsy are able to fall asleep quickly, but may wake frequently throughout the night.

Sleep Attacks

A sleep attack is an inability to stay awake during the day. Sleep attacks are part of the excessive daytime sleepiness that characterizes narcolepsy.

Automatic Behaviors

Automatic behaviors occur when a person experiences a brief sleep episode in the middle of an activity. The person continues the activity, but they will not remember what they were doing. Automatic behaviors can be dangerous if they occur while driving.

Other Symptoms

Narcolepsy can have negative impacts on social involvement, cognition, and mental health, including depression and anxiety. Narcolepsy is also associated with weight gain and precocious puberty.

Learn more about Symptoms of Narcolepsy.

Types of Narcolepsy

There are three types of narcolepsy — type 1, type 2, and secondary narcolepsy.

Until 2014, type 1 narcolepsy was referred to as narcolepsy with cataplexy. It may still be referred to as narcolepsy with cataplexy in some contexts. Type 1 narcolepsy is distinguished from type 2 narcolepsy by the presence of cataplexy, a sudden loss of muscle tone. Another distinguishing feature of type 1 narcolepsy is low levels of hypocretin. Low hypocretin levels are present in 90 percent of people with type 1 narcolepsy.

Type 2 narcolepsy was previously known as narcolepsy without cataplexy. Unlike individuals with type 1, those with type 2 do not have cataplectic episodes and may or may not have low hypocretin levels. Otherwise, type 1 and 2 narcolepsy share symptoms, including excessive daytime sleepiness, sleep paralysis, and hallucinations.

Secondary narcolepsy is caused by damage or injury to the hypothalamus — the part of the brain that controls sleep function and produces hypocretin. People with secondary narcolepsy share many of the same symptoms as those with types 1 and 2. They will likely also sleep 10 or more hours per day and possibly show signs of neurological damage, including loss of peripheral vision and memory problems.

How Is Narcolepsy Diagnosed?

Narcolepsy is diagnosed through a combination of medical history and diagnostic sleep studies. Unfortunately, diagnostic delays have been common for people with narcolepsy, though improved understanding of the condition is making diagnosis faster.

There are different diagnostic criteria for the different types of narcolepsy, but the diagnostic process may include several elements.

Medical History

A neurologist or sleep specialist will take a detailed medical history and ask questions about any symptoms of narcolepsy, including excessive daytime sleepiness and cataplexy. Discussing your medical history and symptoms can help your physician determine next steps for diagnosing your condition.

Differential Diagnosis

Differential diagnosis is the process of ruling out potential reasons for a set of symptoms. As part of the diagnostic process for narcolepsy, your health care provider may consider other sleep disorders, such as obstructive sleep apnea; other medical conditions; or medications that could cause your symptoms.

Polysomnogram (PSG)

A polysomnogram (PSG) is an overnight sleep study used to measure nighttime sleep patterns. The PSG will record brain and muscle activity, eye movement, and breathing.

Multiple Sleep Latency Test (MSLT)

An MSLT is usually conducted the day after a PSG. The test is used to evaluate excessive daytime sleepiness. You will be asked to take five short naps every couple of hours. The MSLT measures how quickly you fall asleep (known as sleep latency) and the time it takes to enter REM sleep.

Other Tests

Your physician may conduct additional tests in order to diagnose your condition. These include:

  • Hypocretin level testing — Your doctor may test your hypocretin levels via a lumbar puncture (also called a spinal tap). Low levels of hypocretin in cerebrospinal fluid indicate type 1 narcolepsy. This test is usually only conducted if other diagnostic tests are inconclusive.
  • Genetic testing — In cases where your symptoms and tests are inconclusive, your doctor may recommend genetic testing to determine if you have a genetic marker associated with narcolepsy.
  • MRI — In cases where secondary narcolepsy is suspected, you may undergo an MRI to confirm damage to the hypothalamus.

Learn more about diagnosing narcolepsy.

How Is Narcolepsy Treated?

There is no cure for narcolepsy, but symptoms can be managed. Narcolepsy is usually treated with a combination of medication and lifestyle changes.

Medications

Medication options for narcolepsy include treatments approved by the United States Food and Drug Administration (FDA) to treat the condition and others that are used off-label. The right medication for you will likely depend on your specific narcolepsy symptoms. The majority of drugs approved to treat narcolepsy are classified as controlled substances in the U.S. because of their potential for abuse.

The following medications are FDA-approved for narcolepsy:

Xyrem (Sodium Oxybate)

Xyrem is the only FDA-approved drug for type 1 narcolepsy, or narcolepsy with cataplexy. Side effects can include confusion, dizziness, and headaches. Because of the potential for abuse, Xyrem is only available through a restricted-access enrollment program.

Wakix (Pitolisant)

Wakix is approved to treat both excessive daytime sleepiness and cataplexy associated with narcolepsy. Wakix is not scheduled as a controlled substance in the U.S. Side effects of Wakix can include nausea, insomnia, and anxiety.

Sunosi (Solriamfetol)

Sunosi is another medication indicated to treat excessive daytime sleepiness associated with narcolepsy. It is also indicated for obstructive sleep apnea. Common side effects include headaches, dizziness, insomnia, and decreased appetite.

Provigil (Modafinil) and Nuvigil (Armodafinil)

Provigil and Nuvigil are used to improve wakefulness among people with EDS associated with narcolepsy and several other sleep disorders. Headache, nausea, dizziness, and insomnia are common side effects.

In addition to FDA-approved medications, various antidepressants and antihistamines may be prescribed off-label for narcolepsy symptoms. Learn more about narcolepsy treatment options.

Lifestyle and Sleep Hygiene

Alongside medical treatment, certain lifestyle habits can improve sleep. Here are some recommendations from the National Institute of Neurological Disorders and Stroke:

  • Go to bed and wake up at the same time each day to maintain a regular sleep schedule.
  • Take short daytime naps.
  • Get exercise daily, at least four to five hours before bedtime.
  • Don’t drink alcohol or caffeine before bed.
  • Avoid eating, especially heavy meals, too close to bedtime.

Treatment for mental health conditions and any conditions related to narcolepsy are both important parts of your narcolepsy treatment plan. Learn more about narcolepsy treatments.

Narcolepsy Condition Guide

References
  1. Narcolepsy Fact Sheet. (n.d.). Retrieved March 25, 2020, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
  2. The Science of Narcolepsy. (n.d.). Retrieved March 25, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/science-of-narcolepsy
  3. Pelin Z, Guilleminault C, Risch N, Grumet FC, Mignot E. HLA-DQB1*0602 homozygosity increases relative risk for narcolepsy but not disease severity in two ethnic groups. US Modafinil in Narcolepsy Multicenter Study Group. Tissue Antigens 1998; 51:96–100.
  4. Koepsell, T. D., Longstreth, W. T., & Ton, T. G. N. (2010). Medical exposures in youth and the frequency of narcolepsy with cataplexy: a population-based case-control study in genetically predisposed people. Journal of Sleep Research, 19(1-Part-I), 80–86. doi: 10.1111/j.1365-2869.2009.00756.x
  5. Narcolepsy. (n.d.). Retrieved March 25, 2020, from https://rarediseases.org/rare-diseases/narcolepsy/
  6. Kanbayashi, T., Sagawa, Y., Takemura, F., Ito, S.-U., Tsutsui, K., Hishikawa, Y., & Nishino, S. (2011, April). The pathophysiologic basis of secondary narcolepsy and hypersomnia. Retrieved March 25, 2020, from https://www.ncbi.nlm.nih.gov/pubmed/21298561
  7. Schenck, C. H., Bassetti, C. L., Arnulf, I., & Mignot, E. (2007, April 15). English translations of the first clinical reports on narcolepsy and cataplexy by Westphal and Gélineau in the late 19th century, with commentary. Retrieved March 26, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564780/
  8. Todman, D. (2007, December 31). Narcolepsy: A Historical Review. Retrieved March 26, 2020, from http://ispub.com/IJN/9/2/7361
  9. Mignot, E. J. M. (2014, May). History of narcolepsy at Stanford University. Retrieved March 26, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4028550/
  10. Narcolepsy (n.). (n.d.). Retrieved March 26, 2020, from https://www.etymonline.com/word/narcolepsy
  11. Golden, E. C., & Lipford, M. C. (2018, December 1). Narcolepsy: Diagnosis and management. Retrieved March 25, 2020, from https://www.ccjm.org/content/85/12/959.long
  12. Symptoms. (n.d.). Retrieved March 25, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/what-is-narcolepsy/narcolepsy_symptoms
  13. Roth, T., Dauvilliers, Y., Mignot, E., Montplaisir, J., Paul, J., Swick, T., & Zee, P. (2013, September 15). Disrupted nighttime sleep in narcolepsy. Retrieved March 26, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746724/
  14. Narcolepsy. (2019, November 10). Retrieved March 26, 2020, from https://emedicine.medscape.com/article/1188433-overview#a2
  15. Baumann, C. R., Overeem, S., Mignot, E., Arnulf, I., Rye, D., Lammers, G. J., … Scammell, T. E. (2014, June 1). Challenges in Diagnosing Narcolepsy without Cataplexy: A Consensus Statement. Retrieved March 25, 2020, from https://academic.oup.com/sleep/article/37/6/1035/2416789
  16. Taddei, R. N., Werth, E., Poryazova, R., Baumann, C. R., & Valko, P. O. (2016, May 6). Diagnostic delay in narcolepsy type 1: combining the patients' and the doctors' perspectives. Retrieved March 26, 2020, from https://onlinelibrary.wiley.com/doi/full/10.1111/jsr.12420
  17. Testing. (n.d.). Retrieved March 26, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/narcolepsy-testing
  18. Self-Care. (n.d.). Retrieved March 26, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/treating-narcolepsy/self-care
  19. FDA Approves Pitolisant for Daytime Sleepiness in Patients with Narcolepsy. (n.d.). Retrieved March 26, 2020, from https://www.pharmacytimes.com/news/fda-approves-pitolisant-for-daytime-sleepiness-in-patients-with-narcolepsy
  20. Jazz Pharmaceuticals, Inc. (2018). Xyrem: Highlights of Prescribing Information. Palo Alto, CA: Author. Accessed at http://pp.jazzpharma.com/pi/xyrem.en.USPI.pdf
  21. Wakix (pitolisant). (n.d.). Retrieved March 26, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/4440-wakix-pitolisant
  22. Sunosi (solriamfetol). (n.d.). Retrieved March 26, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/4229-sunosi-solriamfetol
  23. Nuvigil (armodafinil). (n.d.). Retrieved March 26, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/3924-nuvigil-armodafinil
  24. Medications. (n.d.). Retrieved March 26, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/treating-narcolepsy/medications

A MyNarcolepsyTeam Member said:

I feel horrible when I wake up and my entire body feels like i have weights tied to every limb, especially in my legs and lower back

posted 3 months ago

hug

Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Alison Channon has nearly a decade of experience writing about chronic health conditions, mental health, and women's health. Learn more about her here.

Recent articles

Narcolepsy increases the risk of many mental health conditions, such as depression,...

Bipolar Disorder and Narcolepsy: Understanding the Connection

Narcolepsy increases the risk of many mental health conditions, such as depression,...
Cognitive behavioral therapy (CBT) has been extensively studied in the field of psychology and...

Cognitive Behavioral Therapy for Narcolepsy

Cognitive behavioral therapy (CBT) has been extensively studied in the field of psychology and...
The impact of narcolepsy extends into all areas of life, from lifestyle choices to how you...

Living With Narcolepsy

The impact of narcolepsy extends into all areas of life, from lifestyle choices to how you...
People with narcolepsy may be eligible for additional doses of the Pfizer and Moderna COVID-19...

Are People With Narcolepsy Eligible for COVID-19 Booster Shots?

People with narcolepsy may be eligible for additional doses of the Pfizer and Moderna COVID-19...
Narcolepsy is a rare sleep disorder marked by excessive daytime sleepiness (hypersomnia), sleep...

Narcolepsy and MS: Living With Both Conditions

Narcolepsy is a rare sleep disorder marked by excessive daytime sleepiness (hypersomnia), sleep...
Narcolepsy causes excessive daytime sleepiness, sleep paralysis, and, in some cases, cataplexy (a...

Pathophysiology of Narcolepsy

Narcolepsy causes excessive daytime sleepiness, sleep paralysis, and, in some cases, cataplexy (a...
Narcolepsy is a neurological sleep disorder characterized by four primary symptoms: excessive...

Can Supplements or Alternative Therapies Help Manage Narcolepsy?

Narcolepsy is a neurological sleep disorder characterized by four primary symptoms: excessive...
Since the late 19th century, doctors have described a condition characterized by excessive...

Etymology and History of Narcolepsy

Since the late 19th century, doctors have described a condition characterized by excessive...
If you or a loved one is living with narcolepsy, you’ve probably spent a lot of time researching...

5 Facts About Narcolepsy That Aren't Well Known

If you or a loved one is living with narcolepsy, you’ve probably spent a lot of time researching...
Narcolepsy is a chronic sleep disorder that is characterized by symptoms such as excessive...

New Study Sheds Light on Autoimmune Nature of Narcolepsy

Narcolepsy is a chronic sleep disorder that is characterized by symptoms such as excessive...
MyNarcolepsyTeam My narcolepsy Team

Thank you for signing up.

close