Narcolepsy: syndrome that causes involuntary sleep – 12/26/2023 – Balance

There is a rare syndrome that causes involuntary sleep during work and in other situations that can be dangerous, such as when a person is driving. This neurological disorder, called narcolepsy, can affect daily activities due to the excessive desire to sleep at any time or place. The disease also paralyzes the patient during rest and can cause hallucinations during sleep, such as the person feeling like they are daydreaming, in addition to temporary episodes of muscle weakness (cataplexy).

Sleep attacks can occur several times during the day, without the individual’s control. People suffering from narcolepsy may fall asleep involuntarily even if they are talking, dancing, eating or even driving. Often, after these naps — which can last from ten minutes to more than an hour — patients feel more rested.

Medical student Vitor Dmetruk Carvalho, 21, knows the difficulties of living with narcolepsy. He was diagnosed at age 15 and says he was bullied throughout high school. “I missed several subjects and exams, but the worst part was not having the understanding of my classmates, who always played bad jokes on me”, he remembers.

Their crises occur in the most diverse situations, whether they are monotonous (when sleep appears more frequently and intensely) or during everyday activities, such as studying, eating and practicing physical activities. The student says that deep sleep happens even in happy and pleasurable moments.

“I already missed taking the entrance exam, I slept several times in class and during exams, at the gym and while playing the drums. When sleep comes, I have to lie down behind the drums and take a nap for a few minutes. I can’t help it. Before After receiving the diagnosis, I felt sleepy during a trip to a theme park. Not to mention when I was riding a bus and even cycling. When this happened, I had to stop pedaling, sit on a bench and wait for the period of drowsiness finish”, he reveals.

After the diagnosis, Carvalho’s parents received guidance on routine care and sleep hygiene — a set of practices that must be followed before bed, with the aim of facilitating the onset of sleep — in order to reduce episodes of sleep. drowsiness during the day. Despite these precautions and the use of medication recommended by doctors, the student still faces crises during the day, with an average of three episodes, each lasting at least 30 minutes.

What causes narcolepsy?

Science still does not know the mechanism that leads to the development of all cases of narcolepsy. However, consistent evidence suggests that people with a genetic predisposition, when exposed to some environmental trigger (such as infection or vaccination, for example), activate the immune system, developing defense cells against a group of specific neurons in a brain region known as the lateral hypothalamus. .

“These neurons are responsible for the production of hypocretin, a substance that promotes awakening and maintains the stability of sleep phases. With the drop in hypocretin, individuals are susceptible to greater drowsiness and instability during sleep, especially during the sleep period REM (acronym in English for rapid eye movement, which is the deepest phase of sleep)”, explains neurologist Lúcio Huebra, who has a master’s degree in Psychobiology (Sleep Medicine) and professor of the Medicine course at Centro Universitário São Camilo, in addition to being a full member of the Brazilian Academy of Neurology, the Brazilian Sleep Association and the European Sleep Research Society.

“In addition, some brain injuries, such as encephalitis or multiple sclerosis, can also cause narcolepsy”, adds neurologist and clinical neurophysiologist Leonardo Ierardi Goulart, specialist in sleep medicine and physician on the clinical staff at Hospital Israelita Albert Einstein.

More common among young people

The appearance of the first symptoms, such as excessive drowsiness, hallucinations when falling asleep or waking up, and sleep paralysis, is more common among young people, with two peaks of incidence, around the age of 15 and, later, at the age of 35. Global estimates indicate a prevalence ranging from 0.1 to 17 people per 100,000 inhabitants. In Brazil, an intermediate prevalence is observed, but concrete data is not yet available. According to experts interviewed by Agência Einstein, there are no significant ethnic differences, although there is a slight tendency for the problem to be more common in men.

In Brazil, there is no specific legislation that provides guidance regarding the risk of traffic or work accidents in individuals with narcolepsy. The decision about the risks of accidents in dangerous situations, especially those related to driving, is up to the doctor, together with the patient. In some countries, a test is carried out to assess the person’s ability to stay awake (wakefulness test) before being granted a driving permit.

Behavioral measures play a fundamental role in treatment

Narcolepsy has no cure. Treatment aims exclusively to control symptoms, such as excessive drowsiness during the day. For this, controlled stimulant medications are prescribed, which promote a greater state of alertness. In the case of other symptoms, it is necessary to combine the use of medications from the antidepressant class — the prescription is not based on the effect of these medications on mood, but rather on their direct impact on sleep, preventing the occurrence of these phenomena.

“Unfortunately, the complete treatment available in Brazil is not provided by the SUS (Unified Health System) or by medical plans. Only some of the antidepressants used to treat cataplexy are distributed free of charge. The medications are expensive, which makes treatment difficult adequate in the country, especially in the doses necessary for adequate management”, highlights neurologist Huebra.

Experts highlight that some behavioral measures play a fundamental role in treatment, such as cultivating good sleep hygiene, trying not to sleep late and avoiding the use of screens at night, in addition to taking short naps scheduled and distributed throughout the day to avoid falling asleep. in inappropriate situations.

Throughout the course of the disorder, it is common for individuals to present other associated symptoms, such as weight gain and/or obesity, development of sleep apnea, psychiatric disorders —mainly depression and anxiety — and increased cardiovascular risk.

Huebra also highlights that there are benefits of monitoring with a multidisciplinary team, including a physical educator, nutritionist and psychologist, aiming to improve other behavioral measures, such as the practice of aerobic physical activity, weight control, and depressive and anxious symptoms. .

“Caffeine, for example, is a widely accessible stimulant that can be used in cases of daytime drowsiness, however, as in narcolepsy there is a tendency for fragmented nighttime sleep, it is recommended to reduce consumption at night, especially close to the time of day. sleep”, points out the doctor.

Patients undergoing treatment experience an improvement in quality of life with alleviation of symptoms, but complete remission of complaints is generally difficult, even with optimized treatment.

“Some limitations may persist, such as the tendency to fall asleep during monotonous and inactive activities, risk of cataplexy accidents, need for scheduled naps during work or study breaks”, warns Goulart.

The medical student says that even though he is undergoing treatment and having learned to deal with the syndrome, he still has many sleep attacks during the day. “This leaves me shaken in a way. This routine mainly affects my studies and social relationships. And after each sleep attack during the day I feel very sad. The more sleep attacks I have, the sadder I become. It’s a cycle that always feeds back on itself”, says Vitor Dmetruk Carvalho, who carries out routine consultations at the Hospital das Clínicas de Ribeirão Preto, at the University of São Paulo (USP), with a medical team made up of a neurologist, a sleep doctor and a psychiatrist.

Currently, he lives with professors and college friends who understand the situation and help him with his study routine. “I managed to surround myself with more people who understand and show empathy towards my difficulties and needs. This support network makes a big difference in my life”, assures the medical student.