Narcolepsy: symptoms, diagnosis and treatment

The NHS lists the symptoms below. Symptoms usually start in children and young adults. Narcolepsy UK says all people with narcolepsy experience excessive daytime sleepiness, which is persistent and overwhelming, and that the need to sleep usually builds over minutes though some people have sleep attacks where the transition from wake to sleep happens without warning.

Narcolepsy UK describes cataplexy as a sudden loss of muscle tone triggered by intense, often positive emotions such as laughter or surprise. A person stays conscious throughout, it is not painful, and recovery usually occurs in less than a minute. It describes sleep paralysis as usually resolving within minutes and not being dangerous, though it can be frightening and may be accompanied by hallucinations.

• Feeling sleepy during the day and having difficulty staying awake.

• Falling asleep suddenly.

• Sudden muscle weakness that can cause you to fall (cataplexy), often triggered by emotions such as anger, sadness or laughter.

• Difficulty concentrating.

• Often waking up during the night.

• Being unable to move or speak when falling asleep or waking up (sleep paralysis).

• Dreaming a lot, with dreams that seem real or intense.

Narcolepsy UK describes it as a chronic neurological disorder characterised by excessive daytime sleepiness and often an array of other symptoms, including cataplexy, sleep paralysis, hallucinations, sleep fragmentation, vivid dreams, poor memory, automatic behaviour and obesity. It says narcolepsy is better classified as a disorder of the central nervous system than as a sleep disorder, because of its underlying cause.

The NHS says that if you have narcolepsy you will usually be diagnosed as having type 1 or type 2, depending on your test results, symptoms and other conditions. Narcolepsy UK says it is a spectrum disorder, so the combination and extent of symptoms vary from person to person, which can make it hard to diagnose.

The NHS says to see a GP if you feel tired all the time for no reason, fall asleep suddenly during the day, or have sleep problems that worry you or affect your life. If a GP thinks you or your child may have narcolepsy you will need to see a sleep specialist, who will ask about your symptoms, lifestyle and sleeping habits. It can help to keep a diary of your symptoms to bring to the appointment.

Narcolepsy UK suggests describing all your symptoms to your GP and presenting your score on the Epworth Sleepiness Scale, and emphasising cataplexy, with a video if possible, as it is the most unusual symptom.

The NHS says there is no cure but treatments and lifestyle changes can help manage symptoms, and that you will usually be referred to a specialist doctor to discuss options. Narcolepsy UK describes two complementary approaches: medicines, including stimulants that help with excessive daytime sleepiness and other drugs that prevent cataplexy, and lifestyle changes such as good sleep habits, a healthy diet and short planned naps. It says it can take many years to identify the most effective medicine regime and dose.

For sleep management the NHS recommends keeping a regular bedtime routine by going to bed and waking at the same time each day, taking planned naps during the day, and making sure you get enough sleep at night. You may also be prescribed medicines to help you stay awake during the day or help prevent sudden muscle weakness.

The NHS says narcolepsy is usually a lifelong condition that affects everyone differently, depending on your symptoms, how often they happen and how well treatment works. Sleepiness and sudden muscle weakness are not usually harmful but can cause accidents or injuries, and the risk of sudden sleeping or falling may affect the type of work or activities you can do. Talking therapies may help you cope day to day.

The NHS suggests avoiding alcohol, exercising regularly but not late at night, and avoiding activities at home or work that could be dangerous if you sleep or fall unexpectedly.

You must tell the DVLA if you drive and have narcolepsy. The NHS says whether you can drive depends on your symptoms and treatment, and that you need to follow the DVLA's rules about narcolepsy and driving.

The NHS says it is not known what causes narcolepsy, but it happens when the brain cannot control sleeping and waking normally. You may be more likely to have it if a close relative has it or you have certain rare genetic conditions, such as Prader-Willi syndrome.

Narcolepsy UK explains that in most cases there is a loss of neurons that produce hypocretin (also called orexin), a neurotransmitter that plays a central role in regulating alertness. The damage is thought to be the result of an autoimmune attack arising from a combination of genetic predisposition and an insult to the immune system, for example from a pathogen such as the influenza virus or, in rare cases, vaccination.

The NHS says symptoms of narcolepsy usually start in children and young adults, and that if a GP thinks your child may have narcolepsy they will need to see a sleep specialist. Narcolepsy UK says narcolepsy can affect education as well as employment, driving, relationships and emotional health, and that reasonable adjustments at school or college can help reduce the disability it causes.

If a child is very sleepy in the day, falls asleep suddenly, or has sudden weakness when laughing or upset, see a GP and keep a diary, and ask about referral to a paediatric sleep service.

The NHS says to see a GP if you feel tired all the time for no reason, fall asleep suddenly during the day, or have sleep problems that are affecting your life, such as often waking in the night. The NHS says narcolepsy is not usually harmful in itself but can cause accidents or injuries, so if you are injured, call 999 or go to A&E, and if your symptoms change or worsen, speak to your GP or NHS 111.

On the NHS, a GP refers you to a sleep specialist or sleep centre for tests and treatment decisions. Narcolepsy UK believes the majority of people with narcolepsy have not been diagnosed, so describing your symptoms clearly to the GP matters.

Private sleep clinics offer similar overnight studies and specialist review. If you go privately, ask about shared care with your NHS GP and whether the clinic can prescribe long-term medicines or whether your NHS team will need to take over. Tell the DVLA whichever route you take.