Narcolepsy

Narcolepsy is a rare long-term brain disorder that causes a person to suddenly fall asleep at inappropriate times.

The brain is unable to regulate sleeping and waking patterns normally, which can result in:

• excessive daytime sleepiness – feeling very drowsy 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 and waking in the night – dreams often come as you fall asleep (hypnogogic hallucinations) or just before or during waking (hypnopompic hallucinations)

Narcolepsy doesn't cause serious or long-term physical health problems, but it can have a significant impact on daily life and be difficult to cope with emotionally.

Read more about the symptoms of narcolepsy.

What causes narcolepsy?

Many cases of narcolepsy are caused by a lack of the brain chemical hypocretin (also known as orexin), which regulates wakefulness.

The lack of hypocretin is thought to occur because the immune system mistakenly attacks the cells that produce it or the receptors that allow it to work.

However, this doesn't explain all cases of narcolepsy, and the exact cause of the problem is often unclear.

Things that have been suggested as possible triggers of narcolepsy include:

• hormonal changes, which can occur during puberty or the menopause
• major psychological stress
• an infection, such as swine flu, or the medication used to vaccinate against it (Pandermix) 

Read more about the causes of narcolepsy.

Who's affected?

Narcolepsy is a fairly rare condition. It's difficult to know exactly how many people have narcolepsy because many cases are thought to go unreported.

However, it's estimated the condition affects at least 25,000 people in the UK.

Men and women are thought to be affected equally by narcolepsy, although some studies have suggested the condition may be more common in men.

The symptoms often begin during adolescence, although the condition is usually diagnosed between the ages of 20 and 40.

Diagnosing narcolepsy

Make an appointment to see your GP if you think you may have narcolepsy. They may ask about your sleeping habits and any other symptoms you have.

They may also carry out tests to help rule out other conditions that could be causing your excessive daytime sleepiness, such as sleep apnoea, restless legs in bed and kicking during sleep, or an underactive thyroid gland (hypothyroidism).

If necessary, you'll be referred to a specialist in sleep disorders, who will analyse your sleep patterns. This will usually involve staying overnight in a specialist sleep centre so various aspects of your sleep can be monitored.

Read more about diagnosing narcolepsy.

Treating narcolepsy

There's currently no cure for narcolepsy, but making changes to improve your sleeping habits and taking medication can help minimise the impact the condition has on your daily life.

Taking frequent, brief naps evenly spaced throughout the day is one of the best ways to manage excessive daytime drowsiness.

This may be difficult when you're at work or school, but your GP or specialist may be able to devise a sleep schedule that will help you get into a routine of taking naps.

Keeping to a strict bedtime routine can also help, so you should go to bed at the same time each night whenever possible.

If your symptoms are particularly troublesome, you may be prescribed medication that can help reduce daytime sleepiness, prevent cataplexy attacks and improve your sleep at night.

These medications are usually taken as daily tablets, capsules or drinkable solutions.

Read more about treating narcolepsy.

Information about you

If you or your child has narcolepsy, your clinical team will pass information about you/them on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Find out more about the register.

Narcolepsy and driving

If you're diagnosed with narcolepsy, it may affect your ability to drive. Stop driving immediately and inform the Driver and Vehicle Licensing Agency (DVLA).

You'll need to complete a medical questionnaire so your individual circumstances can be assessed. You'll usually be allowed to drive again if your narcolepsy is well controlled and you have regular reviews to assess your condition.

GOV.UK has more information about narcolepsy and driving. The Narcolepsy UK website also has more on driving and narcolepsy.