How can narcolepsy affect your life?

Written by: Professor Matthew Walker
Published:
Edited by: Emily Lawrenson

Narcolepsy can have a serious effect on people's lives, but it is a condition which is often misunderstood by the general public. Here, leading neurologist and expert in narcolepsy, Professor Matthew Walker, explains more about the condition and the impact it has on everyday life. 

 

What is narcolepsy?

Although we all occasionally nod off or feel sleepy during the day, we can usually clearly differentiate between sleep and wakefulness. Somebody with narcolepsy, however, lives in a perpetual state of never knowing when overwhelming sleepiness may occur, as their brain is incapable of regulating sleep and wake cycles. They struggle to maintain wakefulness during the day, or find themselves randomly falling asleep at innapropriate moments. They also cannot regulate their sleep at night, which is therefore frequently disrupted and disturbed. In addition, the brain cannot regulate dream sleep phenomena.

During dream sleep, our bodies are paralysed so that we don’t act out our dreams. People with narcolepsy may have dream sleep intruding into wakefulness, resulting in hallucinations or transient muscle paralysis brought on by strong emotions (usually laughter or anger), termed cataplexy.

How can everyday life be affected by narcolepsy?

Narcolepsy affects at least 25,000 people in the UK. It can seriously interfere with work, studies, and social interactions. If the sleepiness or cataplexy are not adequately controlled, people with narcolepsy cannot drive or operate machinery, or take part in any number of activities that require concentration and alertness.

Many people with narcolepsy also find that cataplexy (transient muscle weakness) is often triggered at awkward times, such as business meetings or social occasions. Some individuals may suffer from sleep paralysis, a terrifying experience when they wake up and find themselves unable to speak or move. This may last anywhere from a few seconds to several minutes.

‘Sleep attacks’ are another common symptom, and can also happen at any moment. Also momentary loss of awareness (microsleeps) can occur leading to people writing, typing or speaking nonsense.

Narcolepsy is a commonly misunderstood neurological condition. For a condition that is mostly associated with falling asleep during the day, it may seem strange to many that poor and disrupted sleep at night is also very common in people with narcolepsy. People with narcolepsy also commonly put on weight due to a low metabolic rate. Narcolepsy, if poorly controlled, can have a devastating effect on a person’s life, resulting in social isolation and depression.

What are the best ways to cope with narcolepsy?

Although there is no known cure for narcolepsy, there are a number of coping strategies an individual can use to improve their quality of life. These include:

• Improving sleeping habits by trying to get to sleep at the same time each night
• Educating others about narcolepsy so that they are aware of the condition
• Understanding one’s own needs and what might trigger uncontrollable sleepiness and cataplexy so as to minimise the risk of them occurring in embarrassing situations
• Flexibility with social arrangements
• Planned naps in order to replenish energy levels
• Certain medications and stimulants prescribed by a GP or specialist can also help alleviate symptoms and allow many sufferers to lead more or less normal lives

If you or anyone you know is experiencing narcolepsy symptoms, medical advice should be sought.

By Professor Matthew Walker
Neurology

Professor Matthew Walker is a top neurological clinician and expert in the field of epilepsy and neurological sleep disorders. A Cambridge graduate, he treats these disorders from his Queen's Square London clinic. He is a pioneer in his research field and has published 100s of articles, book chapters, and books.

In addition, he is head of the Department of Clinical and Experimental Epilepsy at University College London, and the National Hospital for Neurology and Neurosurgery, and also serves as a council member of national and international epilepsy boards and associations. He received the Ambassador for Epilepsy award from the International League Against Epilepsy in 2013.

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