Introduction and current guidance

Introduction and current guidance

Narcolepsy is a rare, disabling long-term brain disorder that causes a person to fall asleep at inappropriate times. It is estimated to affect at least 25,000 people in the UK, and is usually diagnosed between 20 and 40 years of age, although the symptoms often begin during adolescence (Narcolepsy: NHS Choices).

In people with narcolepsy, the brain is unable to regulate sleep and waking patterns normally, which can result in:

  • excessive daytime sleepiness: feeling very sleepy throughout the day, and having difficulty concentrating and staying awake

  • sleep attacks: falling asleep suddenly and without warning

  • cataplexy: temporary loss of muscle control resulting in weakness and possible collapse, often in response to emotions such as laughter and anger

  • sleep paralysis: a temporary inability to move or speak when waking up or falling asleep

  • excessive dreaming: dreams often come when falling asleep (hypnogogic hallucinations) or just before or during waking (hypnopompic hallucinations)

  • disturbed nocturnal sleep: frequent waking in the night.

Managing narcolepsy involves implementing good sleep hygiene, which may include taking brief planned naps and sticking to a strict bedtime routine. Accessing counselling and support may also be important for people to come to terms with the sleep disorder and its implications. Several medicines are used to treat the symptoms of narcolepsy. These include stimulants such as modafinil, dexamfetamine or methylphenidate; sodium oxybate; or antidepressants such as selective serotonin reuptake inhibitors (SSRIs), serotonin–noradrenaline reuptake inhibitors (SNRIs) or tricyclic antidepressants. Many of these medicines are not licensed for the treatment of narcolepsy and they vary in the evidence available for their effectiveness in treating narcolepsy. See Narcolepsy: NHS Choices and the EFNS guidelines on management of narcolepsy (Billiard et al. 2006) for more details.