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

Narcolepsy and driving

If you are diagnosed with narcolepsy, you should stop driving immediately and inform the Driver and Vehicle Licensing Agency (DVLA), as the condition may affect your driving ability.

You will need to complete a medical questionnaire, so that your individual circumstances can be assessed.

You will usually be allowed to drive again if your narcolepsy is well controlled and you have regular reviews to assess your condition.

Read more about narcolepsy and driving on the GOV.UK and Narcolepsy UK websites.

Narcolepsy is a rare, long-term brain disorder that causes a person to suddenly fall asleep at inappropriate times.

The brain is unable to regulate sleeping and waking patterns normally, which can result in:

  • excessive daytime sleepiness  feeling very drowsy throughout the day, and having difficulty concentrating and staying awake
  • sleep attacks  falling asleep suddenly and without warning
  • cataplexy  temporary loss of muscle control, often in response to emotions such as laughter and anger
  • sleep paralysis  a temporary inability to move or speak when waking up or falling asleep

Narcolepsy should not cause serious or long-term physical health problems, but it can have a significant impact on daily life and can be difficult to cope with emotionally.

Read more about the symptoms of narcolepsy.

What causes narcolepsy?

Many cases of narcolepsy are caused by a lack of the brain chemical orexin (also known as hypocretin), which regulates sleep.

This deficiency is thought to result from the immune system mistakenly attacking parts of the brain that produce this chemical.

However, this does not explain all cases of narcolepsy, and the exact cause of this problem is often unclear.

Factors that have been suggested to trigger narcolepsy include hormonal changes (which can occur during puberty or the menopause), major psychological stress, a sudden change in sleep patterns and an infection (such as flu).

Read more about the causes of narcolepsy.

Who is affected

Narcolepsy is a fairly rare condition. 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.

Men and women are thought to be affected equally by narcolepsy, although some studies have suggested the condition may be more common in men. The symptoms often begin during adolescence, although the condition is usually diagnosed between the ages of 20 and 40.

How narcolepsy is diagnosed

You should make an appointment to see your GP if you think you may have narcolepsy.

Your GP may ask about your sleeping habits and any other symptoms you have. They may then carry out tests to help rule out other conditions that could be causing your excessive daytime sleepiness, such as sleep apnoea or an underactive thyroid gland (hypothyroidism).

If necessary, you will be referred to a specialist in sleep disorders, who will analyse your sleep patterns. This will usually involve staying overnight in a specialist sleep centre so various aspects of your sleep can be monitored.

Read more about diagnosing narcolepsy.

How narcolepsy is treated

There is currently no cure for narcolepsy, but making changes to improve your sleeping habits and taking medication can help minimise the impact the condition has on your daily life.

Taking frequent, brief naps evenly spaced throughout 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 or specialist may be able to devise a sleep schedule that will help you get into a routine of taking naps.

Keeping to a strict bedtime routine can also help, so you should go to bed at the same time each night whenever possible.

If your symptoms are particularly troublesome, you may be prescribed medication that can help reduce daytime sleepiness, prevent cataplexy attacks and improve your sleep at night. These medications are usually taken as daily tablets, capsules or drinkable solutions.

Read more about treating narcolepsy.

Page last reviewed: 28/05/2014

Next review due: 28/05/2016

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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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