Idiopathic, caused by an unknown cause, hypersomnia, increased need for sleep, manifests itself in a constant feeling of fatigue. To date, medicine has not precisely established the causes of this rare disease and does not offer effective means of its treatment. But it affects everything and significantly impacts 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.
If I don’t set the alarm, I can sleep 14 hours a long time and still wake up feeling tired. This is idiopathic hypersomnia, a disease that manifests itself in the fact that the body does not regain its strength during sleep. Throughout the day, I feel insurmountable bouts of fatigue. Imagine that most of the time, you feel as if two nights in a row the day before could not close your eyes from insomnia. I almost always want to sleep, and in the mornings, I need a lot of time to recover and wake up.
Diagnosis is difficult to establish
Doctors diagnosed me with hypersomnia in 2007, at the age of 27, but I think I had it two or three years earlier. As a rule, the signs of hypersomnia appear between the ages of 20 and 30 years. Before I was diagnosed, I was admitted to two neurologists. The first one thought I was depressed and prescribed me vitamins and antidepressants. But the second one sent me for a polysomnographic examination, where many various sensors were attached to me during sleep, then I was given the correct diagnosis. Why is it so NEW difficult to install it? The fact that the only pronounced symptom is fatigue. Also, there is not much medical research on the subject. At first, doctors assume thyroid disease or apnea (temporary stop of breathing during sleep). Only after receiving the result of studies that do not confirm these hypotheses can they diagnose hypersomnia. To date, the causes of this sleep disturbance are largely unclear: there are cases when it is transmitted by heredity, when the cause was some shock from a collision with the external environment. However, in my case, neither explanation is appropriate – I still do not know why it suddenly started.
Treatment doesn’t help.
You can’t cure hypersomnia. I resort to psychostimulants, excitatory; they do not treat but help not fall asleep during the day. However, they give side effects (headache and anxiety attacks). To deal with them, I had to take another medicine. The result of this therapy is this: it does not allow me to sleep but does not eliminate the constant feeling of fatigue. I’m overexcited, hyperactive, and if I stop, I’ll collapse.
Learning to live with this disease
The pills I drink impact my memory, my ability to focus, on 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 keep track of the conversation. But I didn’t have any memory lapses as I do now. I feel like NEW the drug is causing my brain to be so tense that, at some point, it can’t do its job. I forget where I put the keys, or I can’t remember what I was told. It happened that I forgot my address or, standing at the supermarket cash register, could not dial the code of my bank card. When I get too tired, I start hitting the doorways and hitting the walls.
The most challenging thing is to accept this state of affairs, to accept the limitations that have appeared in my daily life, and to take them into account. Sometimes I feel the energy, and sometimes I don’t have it at all. I learn to adapt to circumstances, building a life based on my abilities and well-being. For example, I make sure that in those moments when I have no strength at all, I was at home. The disease forced me even to change my place of residence. I lived and worked in Moscow, but now I had to go back to the province where my parents live. I had to leave my job in a real estate agency – I could no longer withstand the frenzied rhythm that she demanded. When I told my superiors about my illness, I was told that disabled people were not needed there.
Today I am out of work, but I can not say that it is easier for me to cope with the disease, on the contrary. I live with anxiety: I want to do something, and at the same time, I don’t have the strength. I want to find a job again – otherwise, it feels like the days are wasted. Which only adds to the anxiety.
It would be ideal to find a job with a flexible schedule with part-time employment. But even in this case, the problem of morning awakening remains; it is given to me with incredible difficulty. I let myself sleep 9, a maximum of 10 hours a day. Unlike narcolepsy, which several times a day arranges micro-hosts, I need a much more thorough daytime sleep, in which I dive for two hours. Gradually, I came up with some devices for myself. So, in the morning, I take turns ringing three alarm clocks, and there is also a lamp that simulates daylight.
Illness affects self-perception
It turns out that it is tough to get your illness to be taken seriously by family and close friends because the symptoms are not obvious. When I tell someone about my hypersomnia, I am readily understood, but, as a rule, I very quickly forget about this circumstance. It is often said, “It is quite imperceptible that you are sick.” Friends more than once invited me to go with them to the movies or the party, but, receiving in response to constant refusals, stopped doing it. 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 amid some event. Anyway, in vain I stopped leaving the house in the evenings, now I feel very lonely. Gradually I lose my temper, 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: sometimes, I lose what is expected and what is not. Sharing with those with similar problems is soothing. The main thing is not to close yourself and talk to loved ones. It is also to learn to listen to yourself, be aware of your abilities, and act when they have the strength to do so. In fact, learning to measure your desires and needs with their own forces is good for everyone!