The disorder has no cure and treatment is based on behavioral measures; look what they are
EINSTEIN AGENCY — There is one rare syndrome which causes involuntary sleep during work and in other situations that can be dangerous, such as when the person is driving. This neurological disorder, called narcolepsy, can affect daily activities due to excessive desire to sleep at any time and place. The disease paralyzes the patient even during rest and can cause hallucinations during sleep, such as the sensation of daydreaming, as well as temporary episodes of muscle weakness (cataplexy).
Sleep attacks can occur several times during the day, without the individual’s control. Those who suffer from narcolepsy he may fall asleep involuntarily even if you 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 he says he suffered bullying throughout high school. “I missed several subjects and exams, but the worst thing was not having the understanding of my classmates, who always played tricks on me,” she recalls.
Their seizures occur in the most diverse situations, be they monotonous (when sleep appears more frequent and intense) or during daily activities, such as studying, eating and practicing physical activities. The student says that deep sleep occurs even in happy and pleasant moments.
“I already missed the entrance exam, I slept several times in class and during exams, in 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 nothing. Before I was diagnosed, I felt sleepy on a trip to an amusement park. Not to mention when I was traveling on a bus and even on a bicycle. When it happened, I had to stop pedaling, sit on a bench and wait for the period of drowsiness ends,” he reveals.
After the diagnosis, Carvalho’s parents received guidance on routine care and sleep hygiene – a set of practices to follow before bedtime, with the aim of facilitating the onset of sleep – in order to reduce episodes of drowsiness during the day. Despite these precautions and the use of medications recommended by doctors, the student continues to face crises throughout 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 an infection or vaccination, for example), activate the immune system, developing defense cells against a group of specific neurons in a region of the brain 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 decrease in hypocretin, individuals are subject to greater drowsiness and instability during sleep, especially during the sleep period. REM sleep (an acronym for rapid eye movement, which is the deepest phase of sleep)”, explains neurologist Lúcio Huebra, graduate in Psychobiology (Sleep Medicine) and professor of the Medicine course at the São Camilo University Centre, as well as being an expert member of the Brazilian Academy of Neurology, the Brazilian Sleep Association and the European Sleep Research Society.
“In addition, some brain lesions, such as encephalitis or multiple sclerosis, can also cause narcolepsy,” adds neurologist and clinical neurophysiologist Leonardo Ierardi Goulart, sleep medicine specialist and clinical staff doctor at the Israelita Albert Einstein Hospital.
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, subsequently, at the age of 15. 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 are not yet available. According to experts interviewed by Agência Einstein, there are no significant ethnic differences, although there is a slight tendency that the problem is more common among men.
In Brazil there is no specific legislation that provides indications regarding the risk of road or work accidents in people suffering from narcolepsy. The decision on the risks of accidents in dangerous situations, especially those related to driving, lies with the doctor, together with the patient. In some countries, before obtaining a driving license, a test is carried out to evaluate the ability to stay awake (wake test).
Behavioral measures play a critical role in treatment
Narcolepsy has no cure. Treatment is aimed solely at controlling symptoms, such as excessive sleepiness during the day. For this reason, controlled stimulant drugs are prescribed, which promote a greater state of alertness. In case of other symptoms it is necessary to combine the use of drugs from the antidepressant class: the prescription is not based on the effect of these drugs on mood, but rather on their direct effect on sleep, preventing the occurrence of these phenomena.
“Unfortunately, the comprehensive treatment available in Brazil is not provided by the Unified Health System (SUS) or through medical plans. Only some of the antidepressants used to treat cataplexy are distributed free of charge. The drugs are expensive, which makes adequate treatment difficult. in the country, especially in the doses necessary for adequate management”, underlines the Huebra neurologist.
Experts point out that some Behavioral measures play a critical role in treatmentsuch as cultivating good sleep hygiene, trying not to sleep late and avoiding the use of screens at night, as well as taking short naps scheduled and distributed throughout the day to avoid falling asleep in inappropriate situations.
Over the course of the disorder, it is common for individuals to experience other associated symptoms, such as weight gain and/or obesity, development of sleep apnea, psychiatric disorders – primarily depression and anxiety – and increased cardiovascular risk.
Huebra also points out that there are benefits to monitoring with a multidisciplinary team, including a physical educator, a nutritionist and a psychologist, with the aim of improving other behavioral measures, such as aerobic physical activity practice, weight control and depressive and anxious symptoms.
“Caffeine, for example, is a widely accessible stimulant that can be used in case of daytime drowsiness, however, since in narcolepsy there is a tendency for fragmented night sleep, it is recommended to reduce its consumption during the night, especially in proximity to the moment of sleep. day, sleep”, underlines the doctor.
However, patients undergoing treatment experience an improvement in the quality of life with alleviation of symptoms Complete remission of complaints is usually difficulteven with optimized treatment.
“Some limitations may persist, such as the tendency to fall asleep during monotonous and inactive activities, the risk of cataplexy accidents, the need for scheduled naps during work or study breaks,” warns Goulart.
The medical student says that despite being treated and learning to manage the syndrome, he still has many sleep attacks during the day. “This leaves me somewhat shaken. This routine especially affects my studies and my social relationships. And after every sleep attack during the day I feel very sad. The more sleep attacks I have, the sadder I become. It’s a cycle which always fuels returning to oneself”, says Vitor Dmetruk Carvalho, who carries out routine visits at the Hospital das Clínicas de Ribeirão Preto, of the University of São Paulo (USP), with a medical team made up of a neurologist, a sleep doctor and a psychiatrist.
He currently lives with university professors and friends who understand the situation and help him in his study routine. “I have 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.
Source: Terra
Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.
