Insurmountable fatigue, irritability, weight gain, sudden sleepiness… At 35, Anne discovers that she has narcolepsy. “At the moment, I’m torn: good news, I finally know what I have, but how am I going to continue to live normally?” Testimony.
On the occasion of the world sleep day of March 17, 2023, we met Anne, 40, who is suffering from narcolepsy. There narcolepsy is a rare sickness : she touches 10,000 to 30,000 people, according to the figures ofInserm. It is characterized by poor quality nocturnal sleep, daytime sleepiness and irrepressible drowsiness, which can occur at any time of the day, even while the person is in full activity. It exists two types of narcolepsies: the type 1 narcolepsy is accompanied by a sudden loss of muscle tone (cataplexy) and occurs as a result of a strong emotion such as anger, fear, joy… narcolepsy type 2 is characterized by permanent fatigue during the day, strong urges to sleep, but it is totally free of cataplexy. Whatever the type, this disease is incurable : long-term use of medications to stay awake during the day and to improve the quality of rest at night are, for the moment, the only remedies.
Fatigue, irritability, weight gain “symptoms increase”
It is at 35 years old when the first symptoms appeared. “At the time, I was nurse and at the same time I had resumed studies to become a health manager, she explains to us. I had often intense bouts of fatigue. But I put it down to my life at 200 km/h. I also had a bad sleepbut at that time I had experienced mourning around me and again, I thought that could be the cause. THE doctor she contacts prescribes antidepressantsbut this treatment does not change the case. “The symptoms were increasing crescendo: I fell asleep everywhere and all the time, whether during lectures, in transport or even while eating… The fatigue was horribly strong, like I haven’t slept in 3 days. I was too very irritable and I who was sporty at the time and who paid attention to my dietI had taken 20 kg in an unexplained way. Sometimes Anne has a few episodes of partial cataplexy: his jaw drops, his knees give way… “One day, I was riding a bicycle and I fell because I fell asleep at a red light, like that, in seconds! It was the last straw! I wanted to understand what was happening to me. I decided to consult.”
“In the questionnaire for narcolepsy, I tick all the boxes”
His attending physician suggests that he carry out a polysomnography because he suspects sleep apnea. “I spent the night in a sleep center to record the quality of my night’s rest, but this examination does not reveal anything particular. On the other hand, the doctor at the center makes me fill out a questionnaire to measure my daytime sleepiness and there, I tick all the boxes : Yes, I fall asleep in a snap at the movies, reading, while being a passenger in a car or even when talking with someone.” From then on, he suggests that he make a more in-depth recording of his sleep. The diagnosis falls immediately: Anne is a type 1 narcoleptic. It’s a rare and mostly incurable disease. “At the moment, I’m torn: good news, I finally know what I have, but bad news, it’s a disease for which there is no cure. And I’m panicking: how am I going to continue to live normally now? How am I going to be able to continue my job that I love?”
“Whatever the treatment, there are always adverse reactions”
His doctor prescribes first-line treatment, Modafinila drug of the psychostimulant family. It keeps her awake during the day. “It was awesome for a month : I regained my energy and my alertness. But the body quickly got used to it and the effects faded. As there exists 7 different drug classes, his doctor suggests that he try another molecule, the methylphenidate. “The treatment worked very well: it had a real “on-off” action on me, but the side effects were too harsh. So we changed the treatment again: I switched to solriamfetol, then to pitolisant.” By dint of trials, Anne and her doctor manage to find a combination that suits him pretty well. “It combines pitolisant to improve daytime alertness with a treatment to be taken at night, sodium oxybate, to improve the quality of sleep and eradicate cataplexy. With this association, I’m about 70% fit, I still get very tired sometimes. But I don’t have these sudden sleepiness anymore. and irrepressible, I perform better during the day.” Only, this solution also has difficult side effects : Anne has headache sometimes very strong. “But I make it my business because whatever the treatment, there are always adverse reactions. It’s up to me to see which ones I can bear on a daily basis, or not.”
THE treatment also imposes a rigorous lifestyle and many constraints. “Every day, when possible, I try to take a preventive nap of 20 minutes, it helps me a lot to last the rest of the afternoon. The evening treatment must be swallowed in two doses: the first precisely 2 hours after dinner, and the second in the middle of the night. The consumption of alcohol is strictly prohibited.. THE weekend, I have to rest as much as possible otherwise I know that I will not be able to keep up with the rhythm of the week coming. In short, all this seriously complicates going out with friends… “. I’French Association of Narcolepsy Cataplexy and Rare Hypersommias (ANC) helped her from the start of her illness. “It allowed me to talk with other people with narcolepsy and to discuss daily life, better understand the symptoms, the treatments. Above all, the association helped me envision the future, in particular to dare to complete a disability recognition file in order to obtain accommodations in my work.” Today, she gives back this hand held by investing herself in the association.
Thanks to Anne for her testimony.