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Understanding Narcolepsy

People with narcolepsy feel excessively sleepy during the day. They need regular naps and may lapse into daytime sleep.1

Narcolepsy overview

Narcolepsy is a rare 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 often misunderstood by society, where it may be misjudged for laziness or rudeness.2

Facts about Narcolepsy

People with narcolepsy feel excessively sleepy during the day. They need regular naps and may fall asleep suddenly at any time. Excessive sleepiness can have negative effects on school or work performance, social interactions, and the ability to carry out everyday activities.2

Most people with narcolepsy also experience cataplexy – sudden temporary muscle weakness or loss of muscular control, usually triggered by laughter or excitement.2


The main signs of narcolepsy are excessive daytime sleepiness and need for naps.2 Symptoms may develop slowly over many years, or suddenly over the course of a few weeks.2


While increased sleepiness is normally the first symptom to appear, most people with narcolepsy also suffer from ‘cataplexy’ – a sudden, brief muscle weakness or loss of muscular control in the jaw, arms/legs or whole body, that occurs while the person is awake.2,3 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.2 Cataplexy is usually triggered by strong emotions and, in particular, it is associated with laughing and excitement.2


In children, cataplexy can primarily affect 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.3


Before falling asleep or upon wakening, people with narcolepsy may experience hallucinations, or feel awake but be unable to move.3 During sleep, they may have vivid dreams and nightmares, and may physically act out their dreams.3


people in the UK are estimated to be affected by narcolepsy.1


of people in a US survey with narcolepsy reported they could not perform as well as they would have liked at work or school.4

Epidemiology and burden

Narcolepsy is a fairly rare condition and it’s difficult to know exactly how many people have narcolepsy because many cases do not get reported.1 Symptoms usually begin in childhood, adolescence or young adulthood, but can occur at any time in life.5 Narcolepsy is a lifelong disorder but it does not usually worsen as the person ages.5


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.4 Patients also reported that the symptoms which had the most impact on their life were difficulty in thinking and concentrating, and experiencing excessive daytime sleepiness.4


In children, narcolepsy can be associated with irritability, hyperactivity, poor attention and rapid weight gain. An increased risk for deficits in social functioning, depression and anxiety also mean school performance is typically impaired.6

Facts about Narcolepsy

Symptoms usually begin in childhood, adolescence or young adulthood, but can occur at any time in life.5

People with narcolepsy should stop driving and inform the DVLA at diagnosis. You’ll usually be allowed to drive again providing your narcolepsy is well controlled and you undertake regular reviews to access your condition.1

Diagnosis and care

Narcolepsy is usually diagnosed based on a person’s measurement of sleep patterns, ruling out other conditions and a test called a lumbar puncture.7 A detailed medical history is also essential for diagnosis and individuals may be asked to keep a sleep journal over a period of time.5


Diagnosing narcolepsy can be a challenge as the symptoms can be similar to a number of other conditions.7 In particular, children may struggle to explain their symptoms,4 and their behaviour may be mistaken for a different condition, such as attention deficit hyperactivity disorder (ADHD).6


There is currently no cure for narcolepsy but some of the symptoms can be treated with medicines and lifestyle changes.5 Treatment often involves behavioural techniques to manage sleepiness (e.g., maintaining a regular sleep pattern, and planning naps), as well as medication.5

  1. Narcolepsy Overview: NHS Guide. https://www.nhs.uk/conditions/narcolepsy/ [Accessed March 2022]
  2. Narcolepsy Symptoms: NHS Guide. https://www.nhs.uk/conditions/narcolepsy/symptoms/ [Accessed March 2022]
  3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.
  4. 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.
  5. Narcolepsy Fact Sheet. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet [Accessed March 2022]
  6. Plazzi G, Clawges HM, Owens JA. Clinical characteristics and burden of illness in pediatric patients with narcolepsy. Pediatr Neurol. 2018;85:21–32.
  7. Narcolepsy Diagnosis: NHS Guide. https://www.nhs.uk/conditions/narcolepsy/diagnosis/ [Accessed March 2022]

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