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What is hypersomnia, what are its symptoms and how is it treated?
Idiopathic, that is, caused by an unknown cause, hypersomnia, an increased need for sleep, manifests itself in a constant feeling of fatigue. To date, medicine has not exactly established the causes of this rare disease and does not offer effective treatments for it. But it affects everything and significantly affects our professional, social and personal life. What is it like to live when you want to sleep almost all the time? 32-year-old Christina shares her personal experience with us.
Constant fatigue
If I don’t set an alarm, I can sleep for 14 hours and still wake up feeling tired. This is precisely what idiopathic hypersomnia consists of, a disease that manifests itself in the fact that during sleep the body does not restore its strength, and throughout the day I feel irresistible bouts of fatigue. Imagine that most of the time you feel like you couldn’t close your eyes for two nights in a row because of insomnia. I’m sleepy almost all the time, and it takes me a long time in the morning to recover and really wake up.
Diagnosis is difficult to establish
Doctors diagnosed me with hypersomnia in 2007, at the age of 27, but it seems to me that I already had it two or three years earlier. As a rule, signs of hypersomnia appear between the ages of 20 and 30 years. Before I was given this diagnosis, I visited two neurologists. The first one thought I was depressed and prescribed vitamins and antidepressants for me. But the second one sent me to a polysomnographic examination, where many different sensors were attached to me during sleep, then I was given the correct diagnosis. Why is it so difficult to install it? The fact is that the only pronounced symptom is fatigue. In addition, there is not much medical research on this topic. At first, doctors suspect thyroid disease or sleep apnea (temporary cessation of breathing during sleep), and only after receiving a test result that does not confirm these hypotheses, they can diagnose hypersomnia. To date, the causes of this sleep disturbance are largely unclear: there are cases when it is inherited, when the cause was some kind of shock from a collision with the external environment. However, in my case, neither explanation is suitable – I still do not know why it suddenly started.
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Treatment doesn’t help
There is no cure for hypersomnia. I resort to psychostimulants, aphrodisiacs; they do not cure, but help to stay awake during the day. However, they give side effects (headache and anxiety attacks). To cope with them, I had to take another medicine. The result of such therapy is this: it does not let me fall asleep, but does not relieve the constant feeling of fatigue. I am overexcited, hyperactive, and if I stop, I will immediately collapse.
Learn to live with this disease
The pills I take also affect my memory, my ability to focus, and my behavior. Before I started taking them, I felt tired, it was difficult for me to concentrate and sometimes it was difficult for me to follow the train of thought of the interlocutor. But then I didn’t have memory lapses, as now. I have a feeling that the medicine puts my brain in such a state of tension that at some point it can no longer cope with its tasks. I forget where I put my keys or can’t remember what they told me. It happened that I forgot my own address or, standing at the checkout of a supermarket, could not dial my bank card code. When I get too tired, I start hitting doorways and hitting walls.
The most difficult thing is to accept this state of affairs, come to terms with the limitations that have appeared in my daily life, and take them into account. Sometimes I feel energy, and sometimes I don’t have it at all. I am learning to adapt to circumstances, building a life depending on my capabilities and well-being. For example, I make sure that in those moments when I have no strength at all, I am at home. Illness forced me even to change my place of residence. I used to live and work in Moscow, but now I had to return to the province where my parents live. I had to leave my job in a real estate agency – I could no longer withstand the frantic pace that it demanded. When I told the authorities about my illness, I was told that disabled people were not needed there.
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Today I am unemployed, but I cannot say that it is easier for me to cope with the disease, on the contrary. I live with a feeling of anxiety: I want to do something, but at the same time I have no strength. I would like to find a job again – otherwise the feeling that the days are wasted. Which only exacerbates the anxiety.
It would be ideal to find a job with a flexible schedule, part-time. But even in this case, the problem of waking up in the morning remains, it is given to me with great difficulty. I allow myself to sleep 9, maximum 10 hours a day. Unlike the narcoleptic who micro-siestas several times a day, I need a much more solid daytime nap, which I immerse myself in for two hours. Gradually, I came up with some adaptations for myself. So, in the morning I have three alarm clocks ringing in turn, and there is also a lamp that simulates daylight.
Illness affects self-perception
It turns out to be incredibly difficult to get your family and close friends to take your illness seriously, because the symptoms are not obvious. When I tell someone about my hypersomnia, they readily understand me, but, as a rule, they forget about this circumstance very quickly. It is often said: “It is completely imperceptible that you are sick.” Friends have repeatedly invited me to go to the cinema or to a party with them, but, having received constant refusals in response, they stopped doing this. However, I confess that once it took me two weeks to recover from just one friendly party. And this eternal fear of suddenly falling asleep in the middle of some event … Anyway, in vain I stopped leaving the house in the evenings, now I feel very lonely. Gradually I lose heart, lose confidence in myself, in my abilities.
Sometimes I sit on the Internet and share my feelings on the forum with “comrades in misfortune.” We do not always have the same symptoms, but it is still useful to communicate with them: otherwise sometimes I lose the feeling of what is normal and what is not. Communicating with those who have similar problems is reassuring. What advice would I give to those who have been diagnosed with hypersomnia? The main thing is not to isolate yourself and talk with loved ones. Another thing is to learn to listen to yourself, be aware of your capabilities and act when they have the strength to do so. But in general, learning to measure your desires and needs with your own strength is useful for everyone!