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• Narcolepsy is a long-term neurological disorder that involves a decreased ability to regulate sleep-wake cycles. Symptoms often include periods of excessive daytime sleepiness and brief involuntary sleep episodes.

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Narcolepsy is a rare long-term brain condition 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 finding it difficult to concentrate and stay 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 does not 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.

Find out more about the symptoms of narcolepsy.

What causes narcolepsy

Narcolepsy is often caused by a lack of the brain chemical hypocretin (also known as orexin), which regulates wakefulness.

The lack of hypocretin is thought to be caused by the immune system mistakenly attacking the cells that produce it or the receptors that allow it to work.

But this does not 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 medicine used to vaccinate against it (Pandemrix)

Find out 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.

But it's estimated to affect about 30,000 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 of narcolepsy often begin during adolescence, although it's usually diagnosed between the ages of 20 and 40.

Diagnosing narcolepsy

See a 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'll analyse your sleep patterns.

This will usually involve staying overnight in a specialist sleep centre so various aspects of your sleep can be monitored.

Find out more about diagnosing narcolepsy.

Treating narcolepsy

There's currently no cure for narcolepsy, but making changes to improve your sleeping habits and taking medicine 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.

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This may be difficult when you're at work or school, but a 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 medicine that can help reduce daytime sleepiness, prevent cataplexy attacks and improve your sleep at night.

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

Find out more about treating narcolepsy.

National Congenital Anomaly and Rare Diseases Registration Service

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

The NCARDRS helps scientists look for better ways to prevent and treat narcolepsy. You can opt out of the register at any time.

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.

Page last reviewed: 13 May 2019
Next review due: 13 May 2022

• Narcolepsy is usually treated with behavioral strategies plus carefully chosen medications.
• Behavioral strategies include taking daytime naps and staying active.
• Establishing good sleep habits is key, including developing a consistent sleep schedule, keeping the bedroom quiet and comfortable, and avoiding caffeine or medications in the evening that may interfere with sleep.

Narcolepsy can make people feel as if their lives have unraveled, but with optimal treatment, the disorder is manageable, and most people can lead productive lives. Treatment usually consists of two main approaches: behavioral strategies (such as short naps to reduce sleepiness and staying active to keep alert), plus carefully chosen medications to improve alertness and cataplexy.

Behavioral strategies
Most people with narcolepsy need medications to feel more alert, but there are several things you can do for yourself to increase alertness. Many people find the following suggestions helpful in establishing a successful routine:

• Take daytime naps. Most people with narcolepsy find a brief nap refreshing, with improved alertness for one to three hours afterwards. Naps should be limited to 15–20 minutes, as it can be difficult to wake from the deep sleep of a long nap, and an extended nap in the afternoon may make it harder to fall asleep at night. Try to schedule the nap around the time you find it most difficult to stay awake; for many people this is about 2–3 p.m. If you have severe sleepiness, an additional nap in the late morning may also be helpful. To improve their alertness, some people with narcolepsy find it helpful to take a nap before driving.

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Dr. Scammell talks about the value of naps in treating narcolepsy.

• Stay active. Sitting still for long periods can make anyone a bit drowsy, and this is doubly so for people with narcolepsy. A brief walk often improves alertness. Students may want to sit toward the back of the class so they can stand up and move around to stay alert.
• Establish good sleep habits. Almost everyone feels sleepy after a poor night’s rest, and this is especially true for people with narcolepsy. How much sleep is optimal for you? How much do you sleep on a quiet weekend or a long vacation? Most adults need about 8 hours of sleep, and growing teens often need 9–10 hours of sleep. The following tips may be helpful when trying to establish good sleep habits:
• Set consistent times to go to sleep, and get up so your body and brain get into a regular routine.
• Keep your bedroom quiet and comfortable. Keep any distracting electronic devices, such as a cell phone, computer, or TV, out of the bedroom.
• If you do wake during the night, avoid stimulating activities such as checking email or watching TV. Some people find it easier to get back to sleep if they listen to quiet music or read a magazine for 10 minutes.
• If you need to take a wake-promoting medication in the afternoon, ask your doctor about taking a short-acting form so the medication has worn off by bedtime.
• Avoid stimulants such as coffee in the late afternoon and evening.

• Find more tips for improving sleep at Healthy Sleep’s “Twelve Simple Tips to Improve Your Sleep” web page.

• Avoid sedating medications and heavy meals. Some medications, including many used for allergies, depression, anxiety, or seizures, can cause or increase sleepiness. If you are taking other medications, talk with your doctor about whether any of them may be a concern. Some people with narcolepsy feel especially drowsy after eating a big meal, particularly one rich in carbohydrates, so think about making your meals smaller.
• Consider your caffeine use. Some people with narcolepsy find coffee or other caffeinated beverages helpful to staying awake. For others, coffee is ineffective, or, in combination with stimulant medications, it can cause jitteriness, diarrhea, anxiety, or a racing heart. If coffee is part of your daily routine, it is best to avoid drinking it after 4 p.m., as the caffeine can make it harder to get enough sleep at night.

Additional ideas for staying awake at school and while studying can be found in Tips for Teens with Narcolepsy: Improving Alertness (PDF).

In regards to cataplexy, medications are usually the most effective way to manage this symptom, but some behavioral strategies may also help:

• Get enough sleep. Many people with narcolepsy report that they are more likely to get cataplexy if they are tired, so get enough sleep at night. Some people can sense when they are on edge to develop cataplexy, and this tendency can be reduced by a short nap.
• Enlist help from friends and family. If your cataplexy is brought on by specific triggers or situations such as joking or tickling, encourage your friends and family to avoid these during critical times. Avoiding strong emotions is not a pleasant way to go through life, but if cataplexy is about to occur at an awkward time, it can help if you relax and tone down your emotions.

This content was last reviewed on February 21, 2018