In spite of affecting a small number of people, narcolepsy is a sleep disorder with great social impact in the lives of patients. Of difficult diagnosis and few treatment alternatives, early detection and knowledge about the disease are essential to improve the quality of life of patients.
Dr. Raimundo Nonato, one of the main practitioners of sleep medicine in Brazil, discuss this and other issues in the interview below, granted to the Neurovirutal in his office in Brasilia.
1. Could you introduce yourself and talk about your professional career?
Dr. Raimundo Nonato: I started in sleep medicine about 30 years ago when I was a resident in neurology in the service of Professor Maurice, in Strasbourg, and there I met a person who would become my friend, Professor Jean, who worked with sleep since the 1970s. I began to develop a taste for sleep medicine gradually and started working on it at a time when, not only in Brazil but especially in the city of Brasilia, the sleep matter was unknown. I studied with European teachers, American teachers, Canadian teachers, and could bring many of them to Brasilia to join us in congresses. I got my masters’ degree in sleep medicine in 1999 at University of Brasilia, where I became a professor. I also earned a doctorate degree while in France in 2004. Over the past years, my professional activity has been concentrated almost exclusively within the sleep area of medicine.
2. Narcolepsy is a disease not well known or easily identifiable by general population, differently from insomnia or any other sleep disorders. In many cases, it may be confused with sudden fatigue and even laziness. How to identify the pathological condition and what symptoms should make the patient search for a physician?
Dr. Raimundo Nonato: Narcolepsy is a disease that affects a very small portion of population, about 200 patients out of 100,000. The major problem is the impact it has on the general quality of life (personal, professional and academic), being that the patient with narcolepsy is going to search for doctor without knowing what they exactly have. There are English studies showing a delay of up to 8 years in the diagnosis of narcolepsy. During this period, what basically happens is professional failure or academic failure, which sometimes mark their lives indelibly. Narcolepsy flagships are sleep attacks. Attacks are beyond reproach, irresistible attacks, which occur during the daily life of patients, and that are beyond their control. They may also produce a curious motor symptom, which is loss of muscle tone during moments of joy, when they fall to the ground, awake but without any strength, without tonus in the muscles. These patients may also have hallucinations at bedtime and wake up in the middle of the night, paralyzed. A major problem is how to deal with these patients after diagnosis, since we do not have resources necessary to make a definitive diagnosis. We cannot, for example, provide a dosage of certain substances that are missing in the patient with narcolepsy. This type of procedure is very expensive, so we still need lots of research and more dedication to the treatment of that disease.
3. How is the evolution of the disease? Are there severe forms of such disease? How is the diagnosis made?
Dr. Raimundo Nonato: The evolution of narcolepsy, when it comes accompanied by the cataplectic phenomenon, i.e., lack of muscle tone, may take place in two ways. The literature reports that excessive sleepiness, those sleep attacks, will remain with the patient during all his/her life. However, as time goes by and with retirement, for example, the patient seems to begin dealing with these sleep attacks in a better way, because sleeping is no longer a major problem. Diagnosis, in Brazil, is made primarily through clinical data and then a test chart called multiple sleep latency test is requested, where the patient is given five opportunities to sleep during the day and we observe how long it takes for them to sleep in each of these opportunities, which happens every two hours. The patient with narcolepsy often has an average time, which we call latency, to sleep, which takes less than eight minutes. Some of them take less than three minutes.
4. You have published many articles about insomnia. Recent information shows that Brazil has set a record in the sale of sleeping medicines. In some regions, sleeping pills are only after painkillers. What is the risk of self-medication for this type of problem? When does it turn into a serious disease?
Dr. Raimundo Nonato: Insomnia is a major public health problem and one of the most frequent in medicine. Frequently, sleeping badly or not sleeping at all is immediately attributed by the patient to a personal issue, and they rarely think this is a disease at first sight. This is the reason for not looking for treatment at the time they should do it. Other times, they take medicine thinking that they will feel fine and sleep as they used to. The problem is that there is an activation of brain regions during sleep that control sleeping and wakefulness simultaneously. In other words, those neurons that produce sleep and neurons that produce vigilance work in the brain of a patient with insomnia during the night, at the same time. As wakefulness is fundamental to survive, the brain ends up being dominated by that at the expense of sleep, and the person does not sleep. The issue is that the vast majority of medications commonly used for the treatment of insomnia works on a region of the brain that produces sleep and that is healthy. The defective region is the region that produces wakefulness when it should not. And for treating of this region, there aren’t many drugs. However, we count on cognitive behavioral therapy specifically designed to deal with these problems of rehabilitation of the wakefulness area, because the patient, as they spend time with insomnia, develops bad habits related to sleep and cause the problem to endure. Sometimes we are obliged to prescribe medication in association with cognitive behavioral therapy, once therapy does not act immediately. Nevertheless, when therapy is effective, we are able to remove such medication.