Christelle, 32, suffers from idiopathic hypersomnia. A rare sleeping sickness that affects one in a thousand people, and is manifested by a feeling of permanent tiredness. To date, medicine has not identified the causes of this disorder, and no cure exists to cure it. Professional life, social life, morale ... How do you live when you have almost all the time sleep? She testifies.Héloïse Parada
If I do not program my alarm clock, I can sleep 14 hours in a row, and wake up tired again the next day. Idiopathic hypersomnia is that: a disease that manifests itself in non-recuperative sleep and irrepressible impulses of fatigue during the day. To give you an idea of what I live, most of the time I feel that I have spent two sleepless nights. I almost always want to sleep, and I take a very long time to wake up in the morning: it is the "drunkenness of sleep".
A difficult diagnosis
I was diagnosed hypersomniac in 2007, I was 27 years old, but I think I had been diagnosed for two or three years already. In general, hypersomnia is more likely to occur between 20 and 30 years of age.
I had to consult two neurologists before knowing this diagnosis. The first felt that I was suffering from depression, and prescribed vitamins and anti-depressants. Only when the second person gave me a sleep recording, was I diagnosed hypersomniac. I knew it after a month of waiting.
If it is so difficult to recognize idiopathic hypersomnia, it is first of all because the only identifiable symptom is fatigue. Then, medical research is little advanced on the subject. The diagnosis is especially made when the other tracks, such as problems related to the thyroid, to sleep apnea, etc. have been discarded. The supposed causes? Perhaps heredity, perhaps a shock related to the environment. For my part, neither seems to explain why I am suffering from this disease. What is scary for me today is not knowing if my children will inherit it.
Treatment that does not cure
Idiopathic hypersomnia is an incurable disease. I take excitants that do not cure me, but that prevent me from sleeping during the day. These excitants caused me side effects. Because of headaches and anxiety attacks, I had to take another medicine to calm these repercussions. The effect of this treatment is paradoxical: it prevents me from sleeping, but the feeling of fatigue is always present. I am hyperactive, but if I stop in my activities, I will collapse.