Harnessing Hope: Understanding Narcolepsy and its Impact on Daily Life

Harnessing Hope: Understanding Narcolepsy and its Impact on Daily Life

Almost everyone has experienced it themselves: you’re sitting in a long meeting or attending a lecture, and slowly, your eyes close, and you nod off. A certain drowsiness after a heavy lunch, the so-called soup coma, is also not unusual. However, if sleep often overwhelms you completely unprepared and uncontrollably during activities that require your full attention, this can be an indication of a disease called narcolepsy  (sleeping sickness).

Narcolepsy: Origins

Narcolepsy was first described in 1880 by Jean Baptiste Edouard Gélineau (1859-1906), who derived the name “narcolepsy” from the Greek words narkosis (to numb) and lepsis (to surprise). In Germany, between 20,000 and 40,000 people suffer from narcolepsy, with the number of unreported cases being much higher. Narcolepsy is not to be confused with the better-known epilepsy.

 

Narcolepsy or sleeping sickness

Narcolepsy is a chronic neurological disease that is probably due to a deficiency of the neurotransmitter hypocretin in the brain. This plays a vital role in the regulation of sleep-wake behaviour. It is typical for almost all narcolepsy patients that they are plagued by more or less severe daytime sleepiness. In extreme cases, so-called imperative sleep attacks occur, against which the person concerned cannot defend himself. This can also happen in unusual situations like eating or driving a car.

Such a sleep attack can last from a minute to an hour. If a narcoleptic is awakened early from a sleep attack, he may fall asleep again shortly after that. If the narcoleptic need for sleep is not given in to, this adds up – the person concerned feels even more tired. However, if he gives in to the need for sleep, the patient feels refreshed and alert, but after a while, there may be another sleep attack.

Narcolepsy: Signs and Symptoms

The first signs of narcolepsy usually appear between the ages of 15 and 30; However, the first signs of narcolepsy can appear earlier or later. There are usually four main symptoms of narcolepsy (also known as narcoleptic tetrad or symptom complex). These narcolepsy symptoms are discussed in more detail on the next page and are as follows:

  • Increased daytime sleepiness to the absolute compulsion to sleep
  • Cataplexies (loss of affective tone: loss of muscle control)
  • Abnormal sleep-wake cycle
  • Sleep paralysis (sleep paralysis) with hypnagogic (sleep-related) hallucinations

In addition, the typical, automated actions are often counted. For example, narcolepsy patients may fall asleep while walking and end up running in front of a car. Narcolepsy patients should, therefore, always take special safety precautions – drivers who suffer from narcolepsy must pull over immediately if a sleep attack is imminent to avoid accidents.

People with narcolepsy should also avoid physical work if possible. Anyone operating dangerous machines while sleeping can also cause serious accidents here. Even in the household, special care is required. It is not uncommon for those affected to fall asleep while cooking – if you only use the wrong spices, things will turn out lightly.

 

Narcolepsy: diagnosis and course

Even many doctors can’t always correctly identify the symptoms of narcolepsy. They are often mistaken for those of epilepsy or depression, or worse, misinterpreted as intentional laziness. Therefore, it sometimes takes many years to get a correct diagnosis. The effects on the social environment can often lead to depression since narcolepsy not only goes unrecognized for a long time but is often equated with a mental impairment. However, this is not the case; narcolepsy is a purely organic disease.

Diagnosing narcolepsy is complicated by the fact that the course of the disease is often insidious. Frequently, only increased daytime sleepiness occurs for years, followed by sleep attacks. It is sometimes reported that cataplexy can be triggered by stress, overwork or illness, for example. In general, the form of the symptoms of narcolepsy can vary significantly from person to person.

Narcolepsy: therapy and treatment

Narcolepsy can neither be prevented nor cured according to current knowledge; treating the symptoms is recommended, however, because it can help those affected to cope better with their illness in everyday life and at work. Modafinil is the drug of choice for the treatment of excessive daytime sleepiness in narcolepsy. Modafinil increases daytime alertness by acting on the sleep-wake centres in the brain.

At the same time, the nocturnal sleep of narcoleptics is regulated with medication. Depending on the severity of the narcolepsy, patients can lead an almost everyday life again. So, if you suspect you may have narcolepsy, it makes sense to see a doctor early.

If the diagnosis of narcolepsy is then sure, you should also inform your relatives, work colleagues and employer to avoid possible misunderstandings or to request social assistance. Narcolepsy has the status of a severe disability, which can also lead to a complete inability to work. Early treatment of narcolepsy is also essential to avoid the social withdrawal of those affected.

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