Frequently asked questions about narcolepsy

When does the first symptom of narcolepsy appear in patients and why?

The first symptom of narcolepsy is usually excessive daytime sleepiness. It can occur at any time in life, most often during adolescence or early adulthood, somewhere between the ages of 15 and 30. 0.02% of adult population are affected, independent of gender and race. Research shows that 8% to 12% of people with narcolepsy have a close relative with this disorder. The exact way of heredity is not yet known. However, it is known that patients with narcolepsy have a deficiency of hypocretin, a nervous carrier in the brain. The deficiency is reflected as a worsening of the control of the boundary between alertness and sleep and the sleeping phase of non-REM and REM.

What are the typical symptoms of narcolepsy?

Due to the broken architecture of the sleep, sleep phases in narcolepsy follow in an irregular order. The length of their duration is disordered as well. So, for example, REM sleep occurs in the first 15 minutes after sleeping (in healthy people after 60-90 minutes), which is manifested as paralysis or hallucination at the time of sleep.

Patients with narcolepsy do not have a broken sleep only at night, sleep is also changed during the day. Over the course of the day, they often fall asleep, often also directly into the REM sleep phase (which does not occur in healthy people). Excessive daily sleepiness is objectively confirmed by a mean sleep latency test. The time to fall asleep in healthy people is longer than 12 minutes after the light is turned off, while in narcolepsy patients this time is shorter (less than 8 minutes, most often even shorter than 5 minutes).

We are also interested in the appearance of a REM phase in a daily sleep. In healthy people, in these short periods of sleep, the REM phase is not observed (patients are allowed a maximum of 15 minutes of sleep on each test), while for patients with narcolepsy it is typical that at least two or more tests they observe to fall asleep directly into the REM sleep phase.

Why is early detection of narcolepsy important?

Patients who experience excessive daytime sleepiness and sudden loss of muscle tone triggered by an emotional reaction (cataplexy) have no control over these actions. Therefore, patients fight stereotypes (often referred to as lazy, uninterested, even as psychiatric patients), feelings of shame and social isolation, day after day. Unhealed symptoms can become a serious psychological problem for the patient, affecting mood, interpersonal relationships, physical activity, driving ability, efficiency at school and at work and more.

Does narcolepsy affect the individual's intellectual abilities?

Narcolepsy does not directly affect the individual's intellectual abilities, but it has been proven that insomnia reduces the ability to learn, concentrate, memorise and be attentive. Therefore, we can do a lot with early detection of the disease and effective treatment, especially in children, enabling them to successfully adapt their learning habits and thus also positively influence their self-esteem.

How long does narcolepsy treatment last?

Treatment depends on the individual and the extent of his/her disability, but it takes some time to determine the most appropriate treatment regime. Despite the treatment of symptoms, the disease is completely incurable and lasts the entire life. That is why it is important to discover it early, to set up a proper diagnosis and to have proper treatment to improve the quality of life.

Are there professional and other restrictions for patients with narcolepsy?

Narcolepsy is a neurological disease that lasts the entire life. Successful treatment with medication is possible, but despite taking medication, it is not possible to eliminate the symptoms 100%. Therefore, patients with narcolepsy can not work as professional drivers, at heights or on unsecured objects. Night and shift work are also not recommended.

Narcolepsy patients who are not treated should not drive motor vehicles. However, in patients treated, there is a restriction on the driving of a passenger car based on medical recommendations. Not being able to control sleepiness behind a wheel can be fatal.