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What is narcolepsy?

Narcolepsy is a rare sleep disorder where your brain doesn’t follow the usual sleep-wake cycle. Its most famous symptom involves falling asleep at unusual or inconvenient times.

While it’s not a threat to your physical health, it can have a huge impact on your daily life and your mental wellbeing.

Our online doctors can discuss your symptoms and help diagnose your condition. If needed, they can refer you to a sleep specialist for further assessment.

Who is affected by narcolepsy?

According to Narcolepsy UK, around 30,000 people in the UK have some form of narcolepsy. However, as the condition is often poorly understood, it’s thought that many of these people remain undiagnosed.

Narcolepsy symptoms

While excessive daytime sleepiness is the most well-known narcolepsy symptom, there are other signs that could indicate you have this sleep disorder. They include:

Cataplexy

A temporary loss of muscle strength and tone. It can lead to loss of muscle control, falling over, slurred speech and vision problems. Cataplexy can sometimes be caused by bursts of emotion, such as laughter or anger.

Sleep paralysis

Being unable to move or speak for a short time just before you fall asleep, or just after waking up. It usually passes quickly, but can be quite frightening.

Hallucinations

A lack of sleep can lead to hallucinations, while a disturbed sleep pattern can sometimes result in people acting out their dreams in real life.

Find out more about narcolepsy symptoms here.

Narcolepsy diagnosis

Narcolepsy is usually diagnosed by a combination of ruling out other conditions and analysing your sleep. Our doctors will either carry out these test themselves, or refer you to a sleep specialist if needed.

Here are some of the ways you might be diagnosed:

Look for an underlying cause

Other sleep disorders (e.g. sleep apnoea), depression, medication side effects or a head injury can all cause symptoms similar to narcolepsy.

Sleep assessment

There are number of ways to assess your sleep to try and identify signs of narcolepsy:

  • Keep a sleep diary - You’ll be asked to record the times you fall asleep and wake up, to see what your sleep pattern is like.
  • Epworth Sleepiness Scale - You’ll self-report how likely you are to fall asleep in a range of situations.
  • Polysomnography - You’ll stay overnight at a sleep centre, where your brain activity and movements are monitored.
  • Multiple sleep latency test - You’ll be asked to take naps at certain points in the day and monitor how long it takes you to fall asleep.

Measure orexin levels

Orexin (also known as hypocretin) is a brain chemical that regulates your sleep-wake cycle. Doctors (in hospitals) can measure your orexin levels by taking a sample of your cerebrospinal fluid using a lumbar puncture.

Find out more about how narcolepsy is diagnosed.

Narcolepsy causes

It’s thought that one of the main reasons narcolepsy occurs is because your brain doesn’t produce enough of the sleep-regulating hormone orexin. Orexin keeps you alert and awake, but in some people the neurons in the brain don’t produce enough of it.

There are also a number of possible triggers of narcolepsy:

  • A genetic mutation that increases your likelihood of the condition
  • A bacterial infection
  • Your immune system wrongly attacking healthy brain cells
  • Stress or other mental health conditions
  • An irregular sleep pattern

It’s also linked to a vaccine that was used to combat swine flu in 2009. Some children who received this vaccine have since developed symptoms of narcolepsy.

Find more information on the causes of narcolepsy.

Narcolepsy treatment

Narcolepsy treatment might involve:

Managing your sleep

The first step towards keeping your narcolepsy symptoms under control is to take back control of your sleep. This can be achieved by:

  • Keeping a consistent sleep routine - You should try to go to bed and wake up at the same time each night. A sleep specialist can also help you plan a nap schedule around your day.
  • Having the right sleep environment - Factors such as light, noise, temperature, how comfortable your bed is and your pre-bedtime routine call all influence the quality of your sleep.

Medication

Not everyone who has narcolepsy will need medication, but if your symptoms are severe, it can help. There isn’t a drug that’s specifically aimed at treating narcolepsy, but medicines such as stimulants and antidepressants can have a positive effect.

Our doctors can refer you to a sleep specialist who will decide which medicine is best for you.

Talking to others

As narcolepsy is so poorly understood, those who have it can sometimes feel quite isolated. Talking about narcolepsy can help you reduce the impact it can have on your mental health.

Some people are comfortable confiding in a friend or family member, while others prefer to join focus groups and share their experiences with others who are going through the same thing.

Find out more about narcolepsy treatment here.

Pregnancy and narcolepsy

If you have narcolepsy, it’s natural to be concerned about what will happen when you become pregnant. In particular, you might have concerns about:

  • Whether your symptoms will affect you during labour.
  • Whether your narcolepsy medication is safe to take if you’re pregnant or breastfeeding.
  • The challenges you might face once the baby is born.

Our doctors can provide sensitive advice and, where necessary, refer you to a sleep specialist who will be able to give you the help you need.

You can learn about getting help with pregnancy and narcolepsy here.