Narcolepsy

What it is

Narcolepsy is a chronic neurological disorder in which the brain struggles to regulate the boundary between sleeping and waking. The result is overwhelming daytime sleepiness and, often, sudden sleep attacks that strike even in the middle of activity. Features of dreaming sleep intrude into wakefulness, which produces some of the condition's most striking symptoms.

There are two main types. In narcolepsy type 1, the person also has cataplexy: sudden, brief episodes of muscle weakness triggered by strong emotion such as laughter, surprise or anger, ranging from a slight sag of the face or knees to a full collapse while remaining fully conscious. Type 1 is caused by the loss of brain cells that produce a signalling chemical called hypocretin (also called orexin), which normally helps keep us awake and stabilises sleep. Narcolepsy type 2 has the sleepiness without cataplexy.

What it can feel like

An irresistible pressure to sleep that no amount of willpower holds back, descending in lessons, at work, mid-meal or mid-conversation. Brief, refreshing naps followed by the return of sleepiness within a couple of hours. For those with cataplexy, the strange and frightening experience of laughing at a joke and feeling the knees buckle. Other common experiences include vivid, dreamlike hallucinations while falling asleep or waking, and sleep paralysis, a temporary inability to move or speak just as one wakes, which is harmless but alarming.

Night-time sleep, contrary to what one might expect, is often broken and poor. The exhaustion, the misreading of symptoms as laziness or drunkenness, and the unpredictability of attacks can isolate people and damage education, careers and confidence over years.

How common is it

Narcolepsy affects roughly 1 in 2,000 people, beginning most often in adolescence or young adulthood, though it is frequently diagnosed years or even decades late because the symptoms are misunderstood. It occurs worldwide and affects all backgrounds. The long delay to diagnosis is one of the condition's real harms, because effective help exists once it is recognised.

What causes it

Narcolepsy type 1 is caused by the loss of the small population of brain cells that make hypocretin. The evidence strongly points to an autoimmune process, in which the body's own immune system mistakenly destroys these cells, in people with a particular genetic susceptibility, sometimes following an infection. It is not caused by anything the person or their family did. The cause of type 2 is less well understood. Narcolepsy is not inherited in a simple way, and most people with it have no affected relative.

How it is diagnosed

Diagnosis is made by a sleep specialist and usually requires formal sleep studies: an overnight study followed by a daytime test that measures how quickly, and into what kind of sleep, a person falls during a series of scheduled naps. People with narcolepsy fall asleep rapidly and enter dreaming sleep abnormally fast. In some cases, the level of hypocretin in the fluid around the spinal cord is measured, since it is low or absent in type 1. A careful history of sleepiness, cataplexy and the dream-related symptoms guides the whole process. Other causes of sleepiness, especially sleep apnoea and insufficient sleep, are ruled out first.

How it is treated

There is no cure, but narcolepsy is manageable, and most people do well with a combination of medicines and daily strategies. Treatment is directed by a specialist. Wake-promoting medicines reduce daytime sleepiness, and separate medicines can reduce cataplexy and the dream-related symptoms; the specific choices and their monitoring belong to the sleep or neurology service. Alongside medicines, structure helps enormously: planned short naps at strategic times, regular sleep and wake schedules, and sensible caution around driving and dangerous machinery until symptoms are controlled. Educating family, schools and employers transforms daily life, because accommodations such as a permitted nap or a flexible schedule turn an impossible situation into a workable one.

Narcolepsy in the African context

Narcolepsy is widely unknown here, and the overwhelming daytime sleepiness it causes is routinely mistaken for laziness, rudeness, drunkenness, or a lack of discipline, so people are blamed and shamed for a neurological condition they cannot control. Children and students may be punished for falling asleep in class, and workers may lose jobs. The dramatic symptom of cataplexy, sudden muscle weakness with emotion, can even be read as fainting or a spiritual event. Diagnosis often takes years, and specialist sleep services are scarce. Simply recognising narcolepsy as a real, manageable neurological condition relieves a great deal of unfair blame.

Managing it day to day

Alongside medication, daily habits make narcolepsy more livable.

• Take short, planned naps, which genuinely reduce sleepiness and are part of treatment, not laziness.
• Keep a regular sleep schedule, and protect night-time sleep.
• Be cautious with driving and machinery, and follow medical advice on when these are safe.
• Tell teachers or employers, so reasonable adjustments such as nap breaks can be made.
• Treat any depression or anxiety, which often accompany narcolepsy, and seek understanding rather than judgement. Our find a therapist page can help.