Narcolepsy, like many other diseases, is not visible to those affected, but the sudden onset of symptoms is very distressing and significantly reduces the quality of life. In addition, individuals with narcolepsy often experience exclusion and rejection by those around them.
The frequency of this disease, which occurs in children and adults, is 2-5 per 10,000 – narcolepsy thus falls into the category of rare diseases. Approximately 4000 people in Switzerland are affected, but many are not adequately diagnosed. This neurological disorder is characterized by various symptoms that can occur singly or in combination, ranging from daytime sleepiness, cataplexies, disturbed nighttime sleep, sleep paralysis, and hallucinations. Therefore, narcolepsy can be referred to as a symptom complex or syndrome [1–3].
Sleep attacks lead to social withdrawal
Initial symptom in a majority of patients is excessive daytime sleepiness. Monotonous activities such as reading long texts, driving, watching television, tiring conversations, or even eating, cause episodes of microsleep that last from a few seconds to a few minutes [2]. Even sufficient night’s rest does not bring improvement, because the symptoms can appear just a few hours after waking up. Those affected cannot choose the timing of these sleep attacks themselves, because they occur spontaneously. The persons with narcolepsy therefore withdraw more and more and avoid situations in public, because their behavior is irritating to other people. As a consequence of a prolonged illness, memory and concentration disorders as well as weight gain increasingly occur [2–4].
Cataplexy – falling over due to laughter
The second very impressive symptom of narcolepsy is cataplexy, a brief loss of control of the postural muscles without clouding of consciousness. Triggered by strong emotions such as surprise, joy, fright, shame or laughter, the mimic as well as the bilateral neck muscles and those of the knees fail. The patient buckles, falls over or things fall out of his hand. As quickly as the symptoms come, they go away, but they may occur several times a day. The frequency of symptoms varies considerably and they are also clustered when anticataleptic drugs are discontinued.
Awake and tired in turn
An abnormal sleep pattern is the third and most common symptom seen in narcolepsy. In the process, patients find themselves asleep for a few hours, only to lie wide awake again. This situation can also be observed during the day, as those affected do not get enough rest at night. This symptom is accompanied by sleep paralysis, the temporary inability – at the transition from wakefulness to sleep or from sleep to wakefulness – to make voluntary movements or to speak. This state can be terminated by touching or addressing. As an accompanying symptom of this transition from the waking to the sleeping state and vice versa, visual, tactile or auditory brief hallucinations are also described in isolated cases, which are perceived by the affected person as being close to reality. Such symptoms also occur in association with cataplexies.
A diagnosis is made by a specialist or in a center for sleep research according to the medical history. Often a clarification is initiated very late, because the affected persons feel misunderstood and try to conceal the symptoms in order not to be considered lazy or moody. Important in this context is the fact that there is an increased risk of accidents for those affected when operating machinery or driving a car.
Info for doctor and patient:
www.orpha.net
www.hellwach-narkolepsie-erkennen.de
www.dng-ev.de
Literature:
- Mayer G: Narcolepsy. Genetics – Immunogenetics – Motor disorders. Blackwell Wissenschafts-Verlag, Berlin, Vienna 2000.
- Mayer G: Narcolepsy – Pocket Atlas Special. Georg Thieme Verlag, Stuttgart 2006.
- Geisler P: Hypersomnia, narcolepsy and daytime sleepiness. UNI-MED Verlag AG, Bremen, 1st ed. 2009.
- Lundahl A, Nelson TD: Sleep and food intake: A multisystem review of mechanisms in children and adults. J Health Psychol June 2015; 20: 794-805, doi:10.1177/1359105315573427.
HAUSARZT PRAXIS 2015; 10(8): 7