Narcolepsy is a long-term condition where you feel excessively sleepy during the day and can fall asleep at any time, without warning. It’s down to a difference in your brain’s ability to control your normal cycle of sleeping and waking.
Narcolepsy is a long-term condition where you feel excessively sleepy during the day and can fall asleep at any time, without warning. It’s down to a difference in your brain’s ability to control your normal cycle of sleeping and waking.
Research suggests about 1 in 2,500 people has narcolepsy, with women and men affected equally.
Although it doesn’t cause long-term health problems, narcolepsy can be difficult to deal with emotionally and have a big impact on your day-to-day life. But the good news is that it can be managed with self-care or treatment from a doctor.
So here’s what you need to know about it, including the symptoms and what you can do to get your health and life back on track.
Not everyone has the same combination of narcolepsy symptoms, but these are the symptoms you need to know about:
Other possible symptoms include
, , and .Exactly why narcolepsy happens isn’t known, but it’s likely to be due to a number of factors. We do know that:
many people with narcolepsy have very low levels of a brain chemical called hypocretin, which helps regulate wakefulness and sleep. It’s thought that this is caused by the immune system mistakenly attacking brain cells that make hypocretin. This may happen due to a combination of genetic and environmental factors
family history can sometimes play a part – about 10% of people with narcolepsy with cataplexy have a close relative with similar symptoms
Find useful information on other areas of sleep with our .
Narcolepsy can also be caused by a condition that damages the areas of the brain that make hypocretin, such as:
Although there’s no cure for narcolepsy, making some changes to your lifestyle can help you manage it and reduce the number of attacks you have. Try:
Living with narcolepsy can be difficult for you and hard for other people to understand. It may also be frightening for the people around you if they don’t know what’s happening. So it’s a good idea to talk to friends, family and colleagues about your condition.
You may also find it helpful to talk to other people who have narcolepsy. You could try getting in touch with organisations such as
for support.Although narcolepsy doesn’t cause serious physical health problems, falling asleep without warning can turn otherwise simple things – such as walking down a flight of stairs – into potential hazards. So safety precautions are important.
If you’re diagnosed with narcolepsy, it’s likely that you’ll be advised not to drive. In the UK, you’ll need to tell the DVLA, and they’ll check if you’re safe to drive. If you’ve had good control of your symptoms for at least 3 months, you’ll usually be allowed to drive a car or motorcycle again.
It’s estimated that people with narcolepsy are 3 to 4 times more likely to be involved in a car accident. So it’s safest to avoid driving and other risky activities until you’re properly assessed and treated.
If you have a family member, friend or colleague with narcolepsy, it will help them if you learn about the condition’s symptoms and how it’s treated and managed.
Offer your support and, if necessary, remind them that a social worker can offer career advice, counselling and help with adjustments that can be made at work or school.
If you think you have symptoms of narcolepsy – or if you’ve been diagnosed and your symptoms are affecting your daily life – your doctor should be your first port of call.
You should also see a doctor if you snore very loudly or you wake up gasping during the night. These are symptoms of
, which can also cause excessive daytime sleepiness.If you’re concerned about any symptoms, try our
to help you work out what to do next.When you see your doctor, they will work with you to find out if they should refer you to a specialist sleep clinic. They will ask about:
They may also ask you to fill in a questionnaire called the Epworth Sleepiness Scale, to find out how sleepy you feel during the day. The higher your score, the more likely it is that your sleepiness is caused by a condition such as narcolepsy or sleep apnoea.
If you see a specialist, they’ll ask about your symptoms, medical and family history, and if you’re taking any medication. They’ll do a physical examination and are likely to do 2 tests:
There are 2 types of narcolepsy you can be diagnosed with:
If there’s doubt about your diagnosis, another test may be used to measure your levels of hypocretin – although this isn’t common. It involves having a
to take a sample of the fluid that surrounds your brain and spinal cord (cerebrospinal fluid). If you don’t have other serious medical conditions, low hypocretin strongly suggests you have NT1.Along with the lifestyle changes above, narcolepsy symptoms can be treated with medication prescribed by a specialist. The treatments commonly considered are:
Doctor’s tip
By
, clinical content writer for Healthily“Narcolepsy may affect your ability to do certain jobs, such as working with machinery or working at height or around open water. However, if you’ve been approved to drive after being assessed for narcolepsy, your employer may allow you to work with machinery. You may also be reassessed for other activities if your symptoms decrease, or if you no longer have symptoms due to successful treatment. Your employer can’t legally refuse to give you a job because you have narcolepsy, but they’ll consider what the job involves to ensure both you and colleagues stay safe.”
Important: Our website provides useful information but is not a substitute for medical advice. You should always seek the advice of your doctor when making decisions about your health.