Narcolepsy

Find out about narcolepsy, a condition that causes sleepiness and muscle weakness, including symptoms, treatment and how it affects your life.

Narcolepsy is a rare condition that causes sleepiness and muscle weakness you cannot control. There's currently no cure but medicines and lifestyle changes can help manage it.

Symptoms of narcolepsy can include:

  • feeling sleepy during the day and having difficulty staying awake
  • falling asleep suddenly
  • sudden muscle weakness that can cause you to fall (cataplexy) – this may be triggered by emotions such as feeling angry or sad, or laughter
  • difficulty concentrating
  • often waking up during the night
  • being unable to move or speak when you're falling asleep or waking up (sleep paralysis)
  • dreaming a lot and often having dreams that seem real or intense

Symptoms of narcolepsy usually start in children and young adults.

If you have symptoms of narcolepsy, you should get them checked.

See a GP if:

  • you feel tired all the time for no reason
  • you fall asleep suddenly during the day
  • you have sleep problems that you're worried about or that are affecting your life, such as often waking in the night

If a GP thinks you or your child may have narcolepsy, you'll need to see a sleep specialist.

The specialist will ask about your symptoms, lifestyle and sleeping habits. It can help to keep a diary of your symptoms to bring to your appointment.

You'll usually be offered tests to check how you sleep.

Tests you might have include:

  • having your breathing, brain activity, heart rate and movement measured overnight while you sleep (polysomnography)
  • being monitored to check how quickly you fall asleep (a multiple sleep latency test)
  • having a small sample of fluid taken from your spine using a needle (lumbar puncture) – the fluid is tested for signs you may have narcolepsy

You may also be asked to keep a diary about your lifestyle and sleeping patterns over a few weeks.

If you have narcolepsy, you'll usually be diagnosed as having type 1 or type 2, depending on your test results, symptoms and other conditions you have.

There's currently no cure for narcolepsy, but some treatments and lifestyle changes can help you manage the symptoms.

You'll usually be referred to a specialist doctor who will discuss treatment options with you.

Sleep management

You'll usually be recommended ways to try to manage your sleep to reduce daytime tiredness, such as:

  • keeping a regular bedtime routine by going to bed and waking up at the same time each day
  • taking planned naps during the day
  • making sure you're getting enough sleep at night

Medicines

You may also be prescribed medicines to help you stay awake during the day or help prevent sudden muscle weakness.

If you have narcolepsy there are things you can do to keep yourself safe and reduce your symptoms.

Do

  • avoid alcohol

  • exercise regularly, but avoid exercise late at night

  • avoid activities at home or work that could be dangerous if you sleep or fall unexpectedly

Narcolepsy and driving

You must tell the DVLA if you drive and have narcolepsy. Whether you can drive depends on your symptoms and treatment.

You'll need to follow the DVLA's rules about narcolepsy and driving.

NHS help to get healthy

NHS Better Health has free tools and support to help you get active and drink less.

Visit the NHS Better Health website

Narcolepsy is usually a lifelong condition and affects everyone differently. How it affects you depends on your symptoms, how often they happen and how well your treatment works.

Medicines and sleep management can often reduce daytime sleepiness or sudden muscle weakness.

Some people have symptoms that are harder to control and need more support. You may find talking therapies useful to help you cope day to day.

Needing to sleep more often and sudden muscle weakness caused by narcolepsy is not usually harmful but can cause accidents or injuries.

The risk of sudden sleeping or falling may affect the type of work or activities you can do, and you may need to take extra safety measures.

It's not known what causes narcolepsy, but it happens when your brain cannot control sleeping and waking normally.

You may be more likely to have narcolepsy if a close relative has it or you have certain rare genetic conditions, such as Prader-Willi syndrome.

As well as support from your healthcare team, you may find it helpful to get support from other people with narcolepsy, either at a support group or online.

There are also national charities that can offer support and information about narcolepsy.

Narcolepsy UK

Information and support for anyone affected by narcolepsy.