Narcolepsy with or without cataplexy

Narcolepsy is a neurological disorder that affects the natural cycles of sleeping and waking. It is characterized by excessive sleepiness during the day. This rare disease affects 2–5 out of every 10,000 people (1). At the present time nothing has been found to cure the disease. Therefore the treatment concentrates on relieving the symptoms as far as possible.

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    Cause & Symptoms
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    Diagnosis & Therapy
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    Everyday life

Everyday life

Narcolepsy can have very negative effects on quality of life. Patients regularly experience social exclusion – due to the symptoms and their own efforts to manage them, and also to a lack of understanding of their condition by the people around them.

Narcolepsy in society

The symptoms of narcolepsy – such as daytime sleepiness and cataplexy – are unsettling for other people who observe them and are often mistakenly interpreted as signs of laziness, lack of interest, or even alcoholism or drug dependence. People with narcolepsy suffer a lot under this stigmatization. They often withdraw from social interactions, partly to avoid emotional situations that could trigger episodes of cataplexy, and partly due to embarrassment about the symptoms.

Narcolepsy in partnership and the family

Narcolepsy can also cause problems with partners and family. If sufferers try to avoid emotional situations, they may appear reserved and distant. Talking openly about the disease can improve people’s understanding of the situation and restore patients’ self-confidence. This is a key to maintaining as active a life as possible.

Both the disease and the medication for narcolepsy can have negative effects on sexual function. Patients should definitely discuss any problems of this kind with their partners and also with their doctors.

Narcolepsy at school and at work

Narcolepsy can manifest in school age. Falling asleep in class is often interpreted wrongly, and this can be very distressing for the pupil. Undiagnosed narcolepsy can negatively affect school performance and may result in poor grades that do not accurately reflect the pupil’s true abilities.

Since daytime sleepiness also causes a higher risk of accidents, narcolepsy also influences the kind of work patients can do. Some jobs are incompatible with the disease, for example driving motor vehicles, operating hazardous machinery, or working at height (for example as a roofer). Monotonous activities can increase the risk of falling asleep, and irregular working hours can make the disease worse overall.

Narcolepsy and travel

People with narcolepsy can take several precautions that make travelling easier. Travelling with a trusted companion is a great help. If this is not possible, many airports and railway stations offer help in the form of support staff or wheelchairs. These can help to avoid agitation and physical exertion that could trigger cataplexy. To enable quick and correct treatment in emergencies, it is recommended to carry an emergency medical information card with you. It is also important to note that many medications prescribed for narcolepsy fall under controlled substances laws, and formalities have to be observed when travelling with them. For trips of up to 30 days in duration within the Schengen area, a note from the prescribing doctor, certified by the district medical officer, must be carried (1). For travel outside the Schengen area, the patient must check the legal situation in the country or countries they are travelling to and must take appropriate measures to comply with the rules.

Narcolepsy in Children

Narcolepsy symptoms can begin at any age. 
About 20 % of all patients are 10 years old or younger when they first experience the disease (1).
When children have narcolepsy, their symptoms are often interpreted wrongly, which can make the condition even more distressing for the child.
If daytime sleepiness is the main symptom, it may be difficult to reach a diagnosis, because it is hard to tell this apart from a child’s normal need for sleep (2). Also, children tend to compensate for their sleepiness though hyperactivity, so that hyperactivity disorders are often diagnosed when the real problem is narcolepsy (1, 3).
Narcolepsy in children can also be mistaken for laziness, defiant behaviour, epilepsy, other neurological or medical conditions or intellectual disability (2, 3). Falls caused by cataplexic events may be interpreted as clumsiness (2).
The symptoms of narcolepsy can trigger anxiety, feelings of shame and helplessness and depression in children. Especially if the child experiences a lack of understanding and judgmental attitudes from people around them, they are likely to withdraw from social interaction (2).
Excessive daytime sleepiness can also negatively affect concentration, memory and other cognitive functions, resulting in poor performance at school (2).
Behavioural problems and depression may also result, leading to impaired quality of life (3).
To prevent long-term negative psychological effects, timely diagnosis is essential.

1. Mayer G, Kotterba S. 2001. p. 249-54.
2. Stores G. The protean manifestations of childhood narcolepsy and their misinterpretation. Dev Med Child Neurol. 2006;48(4):307-10.
3. Stores G, Montgomery P, Wiggs L. The psychosocial problems of children with narcolepsy and those with excessive daytime sleepiness of uncertain origin. Pediatrics. 2006;118(4):e1116-23.