Narcolepsy – what it is and how to deal with it

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.

Narcolepsy symptoms

Not everyone has the same combination of narcolepsy symptoms, but these are the symptoms you need to know about:

• hypersomnia
  , or excessive daytime sleepiness (EDS) – this is the main symptom for almost everyone with narcolepsy. You feel sleepy almost all of the time and may find it impossible to resist falling asleep – even if you’re eating, talking or driving. You may fall asleep suddenly, with no warning, and can stay asleep for a few minutes or an hour or so. These ‘sleep attacks’ can sometimes happen several times a day. You may briefly feel refreshed when you wake up, then quickly start feeling sleepy again
• cataplexy – this is a temporary loss of muscle control that can happen while you’re awake, and is usually triggered by a strong emotion. It doesn’t happen to everyone with narcolepsy. If it does, it can cause symptoms such as slurred speech, drooping of your head, giving way of your knees or even falling to the ground. It doesn't last long – from a few seconds to a minute – and you’re fully conscious. Cataplexy can be scary, but as long as you can find a safe place, it’s not usually dangerous
• sleep paralysis
  – this is a temporary inability to move or speak that happens when you’re just waking up or falling asleep. It can last from a few seconds to several minutes. In some cases, you may also get hallucinations – very vivid and occasionally frightening dreams or images (such as thinking someone is in the room with you)

Other possible symptoms include

, , and .

What causes narcolepsy?

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

.

Secondary narcolepsy

Narcolepsy can also be caused by a condition that damages the areas of the brain that make hypocretin, such as:

• head injury
• stroke
• brain tumour
• encephalitis
• multiple sclerosis (MS)

What can YOU do to treat narcolepsy?

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:

• taking short naps during the day
• practising good
  sleep hygiene
  . This includes going to bed and getting up at the same times every day, avoiding electronic devices before bed, creating a comfortable sleeping environment, avoiding exercise or heavy meals close to bedtime and not using caffeine, nicotine or
  alcohol
  in the evening
• avoiding alcohol, sedatives or other medicines that can cause drowsiness – these may make narcolepsy symptoms worse
• eating a
  healthy diet
• exercising
  in the day to help improve your sleep at night

How to cope emotionally with narcolepsy

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.

How to stay safe when you have narcolepsy

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.

How to support someone who has narcolepsy

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.

When to see a doctor

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.

How is narcolepsy diagnosed?

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:

• your symptoms and how often they happen – it’s a good idea to track your symptoms in a diary or by using the Healthily app trackers, so you have this information to hand
• whether you have cataplexy – it’s almost always a sign of narcolepsy, although not everyone with narcolepsy has it
• if there’s any family history of narcolepsy – ask around before you go to your appointment

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:

• polysomnography – this involves making a recording of your brain and muscle activity, breathing and eye movements overnight, when you’re falling asleep and while you’re sleeping
• multiple sleep latency test (MSLT) – this assesses your daytime sleepiness by measuring how quickly you fall asleep (known as sleep latency) and when you go into
  rapid eye movement (REM)
  sleep, which usually happens 60 to 90 minutes after you fall asleep. This is the stage of sleep when you tend to have vivid dreams. If you go into REM sleep within 15 minutes, it’s likely that you have narcolepsy

There are 2 types of narcolepsy you can be diagnosed with:

• type 1 narcolepsy (NT1) – previously known as ‘narcolepsy with cataplexy’, this is when you have cataplexy as well as excessive daytime sleepiness. It can also be diagnosed if you have low levels of hypocretin (cataplexy eventually happens in many people with low hypocretin)
• type 2 narcolepsy (NT2) – previously known as ‘narcolepsy without cataplexy’, this is when you have similar symptoms to people with NT1, but you don’t have cataplexy. You usually have normal hypocretin levels, too. If you go on to develop cataplexy, your diagnosis can be changed to NT1 (this happens in about 10% of cases)

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.

How a doctor can help treat narcolepsy

Along with the lifestyle changes above, narcolepsy symptoms can be treated with medication prescribed by a specialist. The treatments commonly considered are:

• modafinil – usually recommended first, this medicine stimulates your nervous system to increase wakefulness. For most people, it effectively helps to reduce daytime sleepiness and improve alertness
• amphetamine-like stimulants – if modafinil doesn’t help, a stimulant medicine such as methylphenidate can help to reduce daytime sleepiness. But these kinds of medicines can cause side effects, such as
  anxiety
  , shakiness and changes in your
  heart rhythm
  , as well as having the potential for
  addiction
  and abuse
• antidepressants
  – tricyclic antidepressants and
  selective serotonin reuptake inhibitors (SSRIs)
  can be used to help control cataplexy. In general, they have fewer side effects than amphetamine-like stimulants, but still cause side effects for some people
• sodium oxybate – also known as gamma hydroxybutyrate (GHB), this is sometimes used to treat cataplexy and excessive daytime sleepiness. But you have to take it twice during the night, and it may not be available to you because of safety concerns. It’s only usually considered if other treatments haven’t worked