Narcolepsy 

Introduction 

Narcolepsy

Samantha was 16 when she was diagnosed with narcolepsy, a chronic sleep disorder. She describes the symptoms and how it affects her daily life, and an expert discusses its causes and treatment.

Media last reviewed: 02/10/2013

Next review due: 02/10/2015

How common is narcolepsy?

Narcolepsy is a fairly rare sleep disorder. It is difficult to know exactly how many people have narcolepsy because many cases are thought to go unreported. However, it is estimated that the condition affects at least 25,000 people in the UK.

Both men and women are affected equally by narcolepsy. The symptoms often begin during adolescence, although the condition is usually diagnosed when a person is between 20 and 40.

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Narcolepsy is a rare but serious brain disorder that causes a person to suddenly fall asleep at inappropriate times.

It's a long-term condition that disrupts normal sleeping patterns.

The symptoms of narcolepsy can range from mild to severe and may include:

  • sleep attacks - falling asleep suddenly, without warning
  • excessive daytime sleepiness
  • cataplexy - temporary muscle weakness in response to emotions such as laughter and anger

Read more about the symptoms of narcolepsy.

What causes narcolepsy?

Many cases of narcolepsy are now known to be caused by an autoimmune response.

This is where antibodies (infection-fighting proteins) are released by the body, but instead of destroying disease-carrying organisms and toxins, they attack healthy cells and tissue.

In the case of narcolepsy, antibodies attack areas of the brain that produce a sleep-regulating chemical called orexin (also known as hypocretin). This leads to a deficiency in orexin, resulting in narcolepsy (in particular, narcolepsy with cataplexy).

However, research has shown some people with narcolepsy still produce near-normal levels of orexin. In these cases, the exact cause remains unclear.

Read more about the causes of narcolepsy.

Diagnosing narcolepsy

To correctly diagnose narcolepsy, your GP will closely examine your medical and family history. They will ask about your sleeping habits and any other symptoms you have.

Your GP may also carry out tests to help rule out other underlying conditions that could be causing your excessive daytime sleepiness.

If your GP thinks you have narcolepsy, you will be referred to a sleep disorder specialist for an in-depth analysis of your sleep patterns.

Read more about sleep analysis and diagnosing narcolepsy.

Treating narcolepsy

There is currently no cure for narcolepsy. However, you can manage your symptoms and minimise the impact the condition has on your daily life.

Taking frequent, brief naps evenly spaced through the day is one of the best ways to manage excessive daytime drowsiness. This may be difficult when you are at work or school, but your GP should be able to devise a sleep schedule that will help your body get into a routine of taking naps.

Keeping to a strict bedtime routine can also help. Whenever possible, you should go to bed at the same time each night, and try to get at least eight hours sleep a night. This will enable your body to get into a regular routine and help ensure your night-time sleep is less disturbed.

Read more about treating narcolepsy.

Complications

If you have narcolepsy, it should not cause serious or long-term health problems. However, the condition can have a significant impact on your daily life.

Many people with narcolepsy find it difficult to deal with the condition on an emotional level, which can cause problems at home, work or school.

Tell your GP if narcolepsy is making you feel low or depressed. As well as providing advice, they may put you in touch with a narcolepsy support group in your area or a national organisation, such as Narcolepsy UK.

Driving

You must stop driving immediately if you have narcolepsy. It is your legal obligation to inform the Driver and Vehicle Licensing Agency (DVLA) about any medical condition that might have an impact on your ability to drive.

See the GOV.UK website for information about how to tell the DVLA about a medical condition.  

Page last reviewed: 07/06/2012

Next review due: 07/06/2014

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The 2 comments posted are personal views. Any information they give has not been checked and may not be accurate.

RKAlives said on 27 February 2013

My father had this and also Cataplexy.
He died 21 years ago.It was never diagnosed properly and he was told it was all in his mind.Sadly my Mum was not sympathetic and would get angry.They divorced.
He had it from childhood I believe.Somehow ,he was in the Army in the war and also held a job down,till retirement age,how I don`t know.
I can remember as a child Dad`s funny turns as they were called.He would fall asleep while eating a meal sometimes.If my mum got angry he would pass out.
I never heard him raise his voice ,he never got angry with me.We always said he could sleep on a clothes line.He would fall asleep on the bus and end up at the terminus sometimes.
I can remember him being taken away in an Ambulance after he hit his head once.
He lived alone in later years, I was 120 miles away .He
died I think possibly following a" funny turn"he was unable to get up from the floor,now I am older I know what that is like,not to be so agile,he lay for 3 days before he was found and died 5 weeks later in hospital.
How I wish I had heard of this years ago,perhaps he could have been helped.

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spiderlegs said on 22 February 2012

I was Diagnosed with Narcolepsy at the age of 18 (32) years ago am on methylphenidate twice a day also have in pass Ritalin tablet do help .but can were of pending on work etc do fall asleep with out knowing then suddenly wake up sometimes been asleep 20 min to hour .i also after being asleep find it hard to stay awake (evening) so end up going to bed and not even waking up for 9 hours but sometime wake up middle of the night wide awake but soon fall asleep does affect your personal life family do understand if you fall asleep even when talking have woken up with items on me put on by my son as a joke even looking at him with one eye close saying am not asleep finding him looking at me as i have fallen asleep with yes one eye open and so never know whats next driving yes limited on what i can drive and condition does affect your car insurance quote i have found most insurance companys do understand your issues
this condition i with have for rest of my life someting i have to live with

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