Narcolepsy

Recognising narcolepsy

Disrupted sleep-wake cycle

Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle. Narcolepsy is estimated to affect about 1 person in 2,500. That means that in the UK there are approximately 30,000 people who have narcolepsy, though it is believed that the majority have not been diagnosed.

Normal sleep takes the form of a regular pattern of REM (Rapid Eye Movement) and non-REM stages. During a fully night’s sleep, every 90 minutes or so a normal sleeper experiences several minutes of REM sleep, during which dreaming occurs, before switching back to non-REM sleep.

Fragmented night-time sleep

In people with narcolepsy, however, the nocturnal sleep pattern is much more fragmented and typically involves numerous awakenings. When falling asleep at night, or during the day, people with narcolepsy may rapidly enter REM sleep, leading to unusual dream-like phenomena such as hallucinations.

Daytime sleepiness and cataplexy

The most common symptom of narcolepsy is excessive daytime sleepiness (EDS), brought about by an irresistible need to sleep at inappropriate times throughout the day. Many people with narcolepsy also experience cataplexy, a temporary involuntary loss of muscle control, usually in response to strong emotions.

It is usually the onset of EDS that is the first sign that a person has narcolepsy. However, there are other conditions that can cause EDS and it is important that medical advice is obtained as soon as possible (see Seeking medical help).

Living with narcolepsy

Effects on daily life

Narcolepsy can have an effect on almost all aspects of your daily life including educationemployment and your ability to drive, and also relationships and emotional health. Although there is at present no cure for narcolepsy, and some treatments are often only partially effective, there are strategies that can help you to manage your symptoms and enable you to lead as full a life as possible.

Some suggestions …

Take a look at our suggestions for dealing with some of the commonest issues that people with narcolepsy face:

You are not alone!

Because narcolepsy is a rare condition, in normal life many people with narcolepsy may never meet anyone else with the condition. That does not mean that you are alone.

Narcolepsy UK encourages people with narcolepsy to interact with each other and to share their experiences. Through social media, events and our conferences, we aim to help people with narcolepsy support each other. You can also get in touch with us directly, either through the Contact Us page of this website, or by calling our helpline.

Supporting a person with narcolepsy

Many ways to help

If you know someone who has narcolepsy, for instance if you are a parent or other family member or friend, or a colleague or employer, there are many ways in which you can support that person and help them deal with the effects of their condition.

Learn and understand

First, by learning what narcolepsy is, what the symptoms are, and the ways that the condition is treated and managed, you will gain a greater understanding of that person’s needs.

As a parent, for instance, you will soon appreciate not only the direct effects that narcolepsy has, as a result of symptoms such as excessive daytime sleepiness and cataplexy, but also the indirect effects on mental and emotional well-being that can result from the diagnosis of such a debilitating lifelong condition.

Teachers can make a difference

If you are involved in the education of a person with narcolepsy, please visit our Narcolepsy and Education page to read our suggestions for helping to enable a student with narcolepsy to realise their full potential, and to download our guides to Narcolepsy and Education and our Narcolepsy Guide for Teachers.

Support at work is critical

Similarly, if you have a colleague or employee with narcolepsy, please visit our Narcolepsy and Work page to learn how you can help that person be a productive member of your team, and to download our guides to Narcolepsy and Work and our Narcolepsy Guide for Employers.

Narcolepsy in young people

Onset is often in childhood or early adolescence

Narcolepsy can occur at any stage of life, but the onset is often during childhood or early adolescence. The link between narcolepsy and the Pandemrix swine flu vaccine has led to an upsurge in the number of cases of narcolepsy amongst young people.

Challenges for young people

Narcolepsy in young people presents particular challenges in relation to education and to home and family life. Symptoms of narcolepsy, such as cataplexy and hypnagogic hallucinations, can be terrifying, especially for young children, and excessive daytime sleepiness and its effects may be misinterpreted as laziness or lack of intelligence.

Families have an important part to play …

For family members, it is critically important to understand what narcolepsy is and what impact it has upon the young person with narcolepsy. Only then can they provide the practical and emotional support necessary to enable the young person to realise their full potential.

… and teachers too

Teachers and other education professionals need to understand the condition too, so that they can take appropriate measures, such as allowing time for naps during the day and ensuring that the young person is given additional time for exams

You are not alone!

For young people themselves, getting to know others in the same situation can be enormously beneficial. Through social media, events and our conferences, young people with narcolepsy can make friendships that help them deal with the consequences of their condition, and also give them the chance to help others in a similar situation.

“It was lovely for our daughter to be able to talk about her illness at the network support meeting with people who really understood. She seemed to blossom.”

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