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Narcolepsy

Narcolepsy

Manage your narcolepsy

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About Narcolepsy

What is narcolepsy?

Narcolepsy is an example of one of the rare sleep disorders that can affect adolescents and adults.

Sufferers of narcolepsy find that their sleeping and waking patterns aren’t regulated properly. This can lead to excessive tiredness during the day and sleep attacks where sufferers abruptly fall asleep without warning.

What are the symptoms of narcolepsy?

The symptoms of narcolepsy vary between sufferers. Some people experience more symptoms and others experience fewer symptoms very infrequently. Narcolepsy symptoms include:

  • Excessive sleepiness during the day: drowsiness throughout the day, struggling to concentrate and stay awake.
  • Sleep attacks: when the sufferer falls asleep suddenly with no warning.
  • Cataplexy: temporary loss of muscle control due to intense emotions such as joy or anger. This can lead to general weakness and even collapse.
  • Sleep paralysis: temporarily losing the ability to move or speak when you wake up or fall asleep.
  • Excessive dreaming: dreams that come just as you fall asleep (hypnagogic hallucinations) or just before or as you wake (hypnopompic hallucinations).

What causes narcolepsy?

The exact cause of narcolepsy is often not known. Some cases of narcolepsy have no obvious cause. For other people, the condition is caused by a lack of a brain chemical called hypocretin. Also sometimes known by the name orexin, this chemical helps to control and regulate wakefulness.

It isn’t known exactly why the body doesn’t produce enough hypocretin, but it’s possible that the immune system mistakenly attacks either the cells that produce it or the receptors that are affected by it.

Possible triggers of narcolepsy include:

  • Changes to hormone levels, such as during puberty of the menopause
  • Major stress
  • A serious infection, such as swine flu, or its vaccine (Pandemrix)

How can you treat narcolepsy?

There is no cure for narcolepsy but medication can help you manage your symptoms. There are also some lifestyle changes you can make, such as changing your sleeping habits slightly. Read more about these in the section below.

Narcolepsy medication comes in the form of tablets, capsules and drinkable solutions. If your symptoms are severe, your GP may prescribe a stimulant such as modafinil, dexamphetamine or methylphenidate.

Other medication sometimes prescribed to help control symptoms of narcolepsy includes sodium oxybate and certain antidepressants. Speak to your GP about these alternative medications.

What can you do to help prevent narcolepsy?

Taking medication and making some changes to your sleep routine can help to prevent an attack of narcolepsy. If possible, taking frequent short naps throughout the day can help. It’s also a good idea to stick to the same bedtime if you can, as getting into a bedtime routine can improve your narcolepsy.

You should also bear in mind that medication designed to treat allergies and colds can cause drowsiness, which can in turn make narcolepsy worse.

If you have narcolepsy it may affect your ability to drive. As soon as you are diagnosed, you should inform the DVLA. They will want to assess how well controlled your condition is with a questionnaire and ensure that you have regular reviews.