Narcolepsy

Understanding Narcolepsy

People with narcolepsy feel excessively sleepy during the day. They need regular naps, and may lapse into daytime sleep.

Narcolepsy overview

Narcolepsy is an uncommon but burdensome sleep disorder.1 It can have a negative effect on thinking and concentration, on social interactions, and on the ability to carry out everyday activities.2 Narcolepsy is under-recognized by health-care professionals and often misunderstood by society, where it may be mistaken for laziness or moral weakness.3

Facts about Narcolepsy

People with narcolepsy feel excessively sleepy during the day. They need regular naps, and may lapse into daytime sleep. Excessive sleepiness can have negative effects on school or work performance, social interactions, and the ability to carry out everyday
activities.1

People with narcolepsy have excessive daytime sleepiness, and most also suffer from cataplexy – sudden muscle weakness, triggered by laughing or joking.3

Symptoms of narcolepsy

The main signs of narcolepsy are excessive daytime sleepiness and need for naps, over a period that lasts for several months.4 People with narcolepsy may struggle to stay awake during the day and may not sleep well at night.4

 

While increased sleepiness is normally the first symptom to appear, most people with narcolepsy also suffer from ‘cataplexy’ – a sudden, brief muscle weakness in the neck, jaw, arms/legs or whole body, that occurs while the person is awake.4

 

Depending on the location of the muscle weakness, it can cause a person’s head to bob, their jaw to drop, or it can even make them fall over.4 Cataplexy is usually triggered by strong emotions and, in particular, it is associated with laughing and joking.4

 

In children, cataplexy primarily affects the face and may look slightly different – for example, grimacing, mouth opening, or a ‘tongue thrusting’ movement. Children may also feel whole body weakness, and cataplexy in children can occur without laughing or joking.4

 

Before falling asleep or upon wakening, people with narcolepsy may experience hallucinations, or feel awake but be unable to move.4 During sleep, they may have vivid dreams and nightmares, and may physically act out their dreams (e.g., by sleep talking or punching/kicking).4

Up to 1 in 2,000

people (0.05%) are affected by narcolepsy.2

In a survey, 84%

of people with narcolepsy did not perform as well as they would have liked at work or school.1

Epidemiology and burden

Narcolepsy is uncommon, affecting only up to 1 in 2,000 people (0.05%).1 Symptoms usually begin in childhood or adolescence/young adulthood, but rarely in older adults.4 Narcolepsy tends to be most severe among those who suddenly developed it as a child.4 Although the severity decreases as people get older and are treated, narcolepsy is a lifelong disorder.4

 

In a survey in the USA, 84% of people reported that they could not perform at work or school as well as they would like because of their narcolepsy.2 It is common for people with the disorder to have difficulty in thinking and concentrating, and also to experience weight gain.2 People’s social life may suffer if they try to avoid emotions, such as laughing, that can trigger cataplexy.4

 

People with narcolepsy must avoid jobs that place themselves in danger (e.g., working with machinery), or that may cause danger to others (e.g., driving a bus or flying a plane).4 Narcolepsy is associated with a very high risk of road traffic accidents.6

 

In children, narcolepsy is associated with irritability, hyperactivity, poor attention, feeling ashamed, and dropping out of school.3

Facts about Narcolepsy

Symptoms usually begin in childhood or adolescence/young adulthood, but rarely in older adults.3

People with narcolepsy should avoid jobs that place themselves or others in danger (e.g., working with machinery or driving a bus).3

People who are concerned that they – or their loved ones – are experiencing symptoms of narcolepsy should see their doctor for help and advice.

Diagnosis and care

Narcolepsy is diagnosed based on a person’s medical history, blood tests, and measurement of sleep patterns.5

 

Diagnosing narcolepsy can be a challenge, and it can be several years until a correct diagnosis is made.2 In particular, children may struggle to explain their symptoms,2 and their behavior may be mistaken for a different condition, such as attention deficit hyperactivity disorder (ADHD).3

 

There is currently no cure for narcolepsy, and most people require lifelong management.7 Treatment often involves behavioral techniques to manage sleepiness (e.g., maintaining a regular sleep pattern, and planning naps), as well as medication.7

  1. Longstreth WT Jr, Koepsell TD, Ton TG, Hendrickson AF, van Belle G. The epidemiology of narcolepsy. Sleep. 2007;30(1):13–26.
  2. Maski K, Steinhart E, Williams D, Scammell T, Flygare J, McCleary K, Gow M. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419–425.
  3. Plazzi G, Clawges HM, Owens JA. Clinical characteristics and burden of illness in pediatric patients with narcolepsy. Pediatr Neurol. 2018;85:21–32.
  4. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
  5. Ruoff C, Rye D. The ICSD-3 and DSM-5 guidelines for diagnosing narcolepsy: clinical relevance and practicality. Curr Med Res Opin. 2016;32(10):1611–1622.
  6. Philip P, Sagaspe P, Lagarde E, Leger D, Ohayon MM, Bioulac B, et al. Sleep disorders and accidental risk in a large group of regular registered highway drivers. Sleep Med. 2010;11(10):973–979.
  7. Thorpy MJ, Dauvilliers Y. Clinical and practical considerations in the pharmacologic management of narcolepsy. Sleep Med. 2015;16(1):9–18.

  1. Maski K, Steinhart E, Williams D, Scammell T, Flygare J, McCleary K, Gow M. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419–425.
  2. Longstreth WT Jr, Koepsell TD, Ton TG, Hendrickson AF, van Belle G. The epidemiology of narcolepsy. Sleep. 2007;30(1):13–26.
  3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

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