Narcolepsy

What is narcolepsy?

Narcolepsy is a rare neurological condition where your brain can’t regulate the normal cycle of sleeping and waking. This can cause disturbed sleep, extreme sleepiness during the day and make you fall asleep very suddenly and unexpectedly.

What are the symptoms of narcolepsy?

Narcolepsy is usually a long-term condition and the symptoms can have a big impact on daily life – affecting work, school, and social activities.

Symptoms may develop slowly over a few years or quite quickly over a few weeks. It might affect you regularly or less often, and for some people, the symptoms greatly improve as time goes on.

The main symptoms of narcolepsy are:

• Feeling extremely sleepy during the day – This is often the first sign of narcolepsy. You might find it hard to stay awake and have difficulty concentrating

• Unexpectedly falling asleep – You may suddenly fall asleep at any time without expecting to. Sleep attacks can last from a few seconds to several minutes

• Temporary muscle weakness – Also known as ‘cataplexy’, this can cause you to suddenly lose control of your muscles and is often triggered by an emotion, like anger, laughter, or surprise. It might make your legs collapse, cause your speech to slur or your jaw to drop

• Temporarily unable to move or speak – This can happen for a few seconds or minutes when you’re waking up or going to sleep. It’s also called ‘sleep paralysis’, and it can be a scary experience, but it doesn’t cause any harm

Other symptoms of narcolepsy can include:

• Hallucinations

• Blurred or double vision

• Headaches

• Disturbed, fragmented night-time sleep

• Problems with memory and concentration

• Automatic behaviour, where you automatically carry out activities with no recollection of doing them afterwards

What causes narcolepsy?

In usual brain function, the chemical hypocretin helps to regulate wakefulness. But some people have a lack of this vital brain chemical, which can cause narcolepsy.

A lack of hypocretin isn’t always the cause of narcolepsy – other factors that may play a part include:

• Hormonal changes during puberty or menopause

• Your genes

• Extreme psychological distress

• An infection

How is narcolepsy diagnosed?

A doctor will start by looking at your medical history and asking about your symptoms. It may help to keep a sleep diary before your appointment, so you can tell the doctor what symptoms you’ve had and how often they’re affecting you.

The symptoms of narcolepsy are similar to many other conditions, such as sleep apnoea, epilepsy, underactive thyroid, and depression, so your doctor may undertake tests to rule these conditions out. These tests might include blood tests, a physical examination and a blood pressure check.

If the doctor thinks it’s narcolepsy, they’ll refer you to a sleep specialist to investigate your sleep patterns in more detail. This might involve:

• A questionnaire asking how likely you are to fall asleep in different situations, known as the Epworth sleepiness scale

• Staying the night at a sleep centre so your sleeping can be observed (polysomnography)

• Monitoring how quickly you fall asleep during the day – known as a multiple sleep latency test

• Measuring your hypocretin levels by taking a sample of cerebrospinal fluid with a needle using a lumbar puncture procedure

Narcolepsy treatment

There’s no cure for narcolepsy, but many people can improve the symptoms by introducing good sleeping habits and taking medication. 

Medication

The types of medication for narcolepsy may include: 

• Stimulants to help keep you awake during the day

• Antidepressants to help with sleep paralysis and hallucinations

• Wakefulness promoting agents that can help to reduce extreme sleepiness

How to live with narcolepsy

One of the most effective ways to help you live with narcolepsy is to improve extreme daytime sleepiness by taking regular, short naps throughout the day. The GP can help you create a workable schedule around your daily life.

Other ways to improve your sleep patterns include:

• Going to sleep and waking up at the same times each day

• Introducing a bedtime routine, with relaxation before bed

• Creating the right sleeping environment that’s quiet and a comfortable temperature

• Avoiding stimulants like caffeine and fizzy drinks, as well as alcohol, smoking and heavy meals before bed