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What is narcolepsy?

Narcolepsy is a neurological condition which affects your brain’s control over when you sleep. It’s a condition characterised by “sleep attacks” during the day, where you suddenly fall asleep without control.

Narcolepsy is relatively rare, affecting just 1 in 2000 people, and affecting men and women equally. The cause is not clear, but it’s thought that narcolepsy can be triggered by puberty, menopause, an infection, or major psychological stress. Most people who are diagnosed with narcolepsy are between 20 and 40 years old.

What are the symptoms?

As already mentioned, the most well-known symptom of narcolepsy is sleep attacks during the day. Other symptoms include:

• excessive daytime sleepiness
• disturbed night-time sleep
• cataplexy – a sudden loss of strength and control in some muscles, resulting in slurred speech, a dropping head, and sometimes falls
• sleep paralysis – a sudden inability to move when falling asleep or waking up which generally lasts for a few minutes
• hallucinations when going to sleep or waking up
• automatic behaviour – doing an activity without having any memory of doing it afterwards

How is it diagnosed?

Diagnosis is carried out by a GP and involves ruling out other conditions which can cause similar symptoms, such as sleep apnoea, restless leg syndrome, epilepsy, or an underactive thyroid gland.

To make a diagnosis, the GP will look at your sleeping patterns and medical history, and conducting some tests. The most common tests include:

• polysomnographic (PSG) testing – this measure the electrical activity of your brain as you fall asleep, and during sleep
• multiple sleep latency test (MSLT) – this measure your “sleep latency”, which is how fast you fall asleep
• lumbar puncture – this is used to remove a sample of your cerebrospinal fluid. People with narcolepsy often have a deficiency of the chemical hypocretin in their brain, so an examination of your cerebrospinal fluid can determine whether this is the case.

How is it treated?

There is a lot you can do to improve the symptoms through good sleep routines and changes to your diet . These include avoiding caffeine, not eating just before bed, keeping your bedroom at a comfortable temperature, and taking frequent naps through the day.

In addition, a doctor might prescribe medication. Options include:

• a stimulant, such as modafinil or dexampthetamine – these help to keep you awake through the day
• sodium oxybate – this can help you to sleep at night and therefore tackle daytime sleepiness, and can also improve cataplexy
• antidepressants – these are sometimes offered as an option to treat sleep paralysis and hallucinations

How will it affect my day to day life?

Narcolepsy is a long term condition so it can have an impact on many areas of life.

Working

With good management of your symptoms, most occupations are open to people with narcolepsy. Your employer has a legal obligation under disability discrimination law to make allowances that enable you to work, such as allowing you to take naps or offering flexitime.

Narcolepsy UK have some useful advice on managing work and narcolepsy here .

Driving

Similarly, as long as you are able to keep your symptoms under control, you will be able to drive and can get car insurance. In the UK you have to inform the DVLA that you have narcolepsy. They will issue you a fixed term driving license and check every few years that you are controlling your symptoms.