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

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

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

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