Narcolepsy is known as “sleeping sickness” or “snooze addiction”. Sleepiness or muscle weakness (cataplexy) makes life difficult for narcoleptics. Find out here how it manifests itself and is treated.
Lazybones or shirkers – these are just some of the prejudices narcoleptics have to face. The extreme sleepiness and constant falling asleep irritates work colleagues, friends and family. That’s why it is important for sufferers to explain the illness to those around them. Some 3,500 people in Switzerland suffer from this disorder.
Narcolepsy is not triggered by psychological problems. Neither is it a mental or mood disorder. Sufferers lack the cells that produce hypocretin (also called orexin), a neurotransmitter that helps regulate sleep–wake cycles. Narcolepsy is therefore when waking and sleeping rhythms become disturbed. So far, no cure has been found for the illness. Researchers have long since suspected that the immune system or a particular susceptibility to infections may potentially be what triggers it. A new study [A1] now shows that the immune cells, or T cells, cause inflammation which leads to neuronal damage or the complete destruction of the nerve cells that produce hypocretin. Based on the findings of this recent study, narcolepsy is evidently caused by an immune response.
The most noticeable symptoms are sudden attacks of sleep or excessive daytime drowsiness. Sufferers feel an irresistible urge to sleep and are completely powerless to resist it. Unless these symptoms appear, however, narcolepsy often goes undiagnosed. This results in the constant state of snooziness being seen as normal. Further symptoms of narcolepsy:
The muscles go weak. Sufferers can no longer speak clearly, lose their voice, collapse and fall over. This weakening of the muscles can last several minutes. Cataplexy is a clear indication of narcolepsy. It is frequently triggered by a spontaneous emotion, such as laughter, anger, stress or sadness. Three-quarters of narcolepsy patients show signs of cataplexy.
Sufferers can no longer move or lose the ability to speak when falling asleep, waking up or completely relaxing. This is often accompanied by the feeling of not being able to breathe, although the respiratory muscles are not paralysed. Sleep paralysis can also last up to a few minutes.
Narcoleptics are fully conscious when they experience these dreamlike hallucinations. They find it difficult to distinguish between the hallucinations and the real world. These unreal sensations often occur when falling asleep or waking up. Hallucinations are not a daily occurrence and often disappear for years before reappearing.
Some individuals suffer from superficial sleep. They become keenly aware of virtually every sound. Sometimes sleep is interrupted by hours of wakefulness. Including suddenly waking up for no reason. Sleep disorders often get worse with long-term illnesses.
While a cure for the illness has yet to be found, medication and behavioural strategies can be used to reduce the symptoms of narcolepsy. Medication is prescribed in consultation with a doctor and according to the narcoleptic patient’s individual symptoms. Possible behavioural strategies for narcolepsy include:
Sharing experiences with other sufferers can also help, for example in a self-help group.
Daniela Janssen (lic. Phil. somnologist and psychotherapist FSP) is a member of the Specialist Somnology Team at the Zentrum für Schlafmedizin Hirslanden Zürich (centre of somnology). She advises adults, young people and children with sleeping disorders. As a psychotherapist, she also works in her own practice. Daniela Janssen was available to the editorial team in an advisory and editorial capacity for this article.