I loved math when I was in junior high school, so I was really shocked when I suddenly fell asleep in math class and missed the explanation of the last big question. And that kind of sleep is not consciously knowing that you are "so sleepy and want to sleep for a while", but only to wake up and realize "Huh?" How did I fall asleep just now? ”。
But students, who have not slept in class, later communicate with classmates and feel that sleeping in class is not a big deal, so they don't take it seriously.
But I was diagnosed with "narcolepsy" in 2019.
High school, frequent sleepiness
When I was in junior high school, my problem sleeping in class was not very serious. But starting high school, falling asleep in class became a problem that bothered me every day.
High school was tight and heavy, and it was common for me to fall asleep in class and not have time to copy the board book, and I woke up to find that my notes were only twisted and unformed lines.
Of course, this is actually an experience that most people have, so it is not seen as a sign of physical problems. But at that time, I was really sleepy, often falling asleep in class and then being woken up by the teacher, and when the class teacher talked to me, he would also ask me if I had fallen asleep in class recently, in what class I fell asleep and so on.
Falling asleep in class became a problem that bothered me every day. 丨Figureworm Creative
I have tried many ways to prevent myself from sleeping, eating mints, applying wind oil essence to the temples, washing my face with cold water... but the effect is average, I still fall asleep when I should be asleep.
It was also at the beginning of this period that I also began to have problems sleeping at night, and I would encounter the situation commonly known as "ghost pressing bed", at that time, I occasionally had the feeling of "feeling that I was awake but my limbs could not move" or "feeling that something was pressing on my body". I panicked at first, but because I woke up in good spirits, I didn't take it seriously. And this symptom is only occasional, may occur once in a few months, and does not have much impact on daily life.
But who would have thought it was a disease?
University, with symptoms of knee weakness and cataplexy
The real impact on everyday life is the beginning of college. I developed an amazing skill in college, which was the ability to "sleep standing up." Anyone who has experienced college military training knows that standing in a military posture sometimes takes a long time, and the reason why I don't find it difficult is because I fall asleep unconsciously while standing, until I can't stand steadily, stagger a bit, and then wake up again. It's funny to say that I touched a lot of fish during my military training.
After that, it enters a stage of "I suspect that there is something wrong with myself", sometimes walking knees will suddenly weaken, taking the bus will sit and stop because of sleep, there will be very realistic dreams so that when I wake up, I can't distinguish reality and dreams for a while.
Then I looked it up on the Internet and learned the name "narcolepsy" through the Internet, and I felt that it was very consistent with my symptoms. But at that time, there was still very little popular science on the Internet, in fact, now searching for "narcolepsy" on the Internet, there will not be a lot of information.
Senior year, first medical treatment
Graduation, internships and other things were in a hurry, and after the internship, I found that I could not adapt to the 8-hour work day, and I could suddenly fall asleep when working in front of the computer and in group meetings. After struggling for a while in such a state of being sleepy during the day and having nightmares to go to work without energy, I felt that it was really not okay, so I decided to go to the hospital.
The first visit didn't go well. At that time, I hung up a neurology expert in Nanjing, told the doctor about my symptoms, and somehow cried out while talking, probably because of too much pressure and abnormal physical symptoms not understood by the people around me and felt aggrieved. The doctor listened to my description and said that there was a possibility of narcolepsy, but that some tests were needed to confirm the diagnosis—"polysomnography monitoring" and "nap test."
The results of the test report at that time丨Photo provided by the author
But after the results came out, the doctor still could not determine whether I was narcolepsy, firstly, the test data was not enough to prove that I was narcolepsy, and secondly, the hospital I visited at that time did not have complete treatment methods. After the report came out, the doctor told me that the symptomatic drug for treating this disease was modafinil, which was not available in their hospital.
In fact, modafinil was not approved for use in China at the time, and other hospitals could not have it.
This visit did not bring about any improvement in my condition.
After working, I was finally diagnosed
My illness worsened over time, I drowsied during the day at work, and occasionally fell asleep unconscious when commuting to work on my own little electric (please do not imitate dangerous movements!). ), I just want to sleep when I come home from work, wake up from nightmares at night, and suddenly fall to the ground while walking...
At the same time, I started looking for papers on the Internet myself, and the time passed for another year. During the paper, I found that Xijing Hospital in Xi'an had published several studies on narcolepsy, including diagnostic cases and follow-up studies on dozens of narcolepsy patients.
A friend was in Xi'an at the time, and I just wanted to ask her about the hospital, but she readily said that she could help me get a number.
After that, through this friend, I had a telephone consultation with the doctor. The doctor asked about some specific information, and I also sent the previous test report to a friend, who forwarded it to the doctor on her behalf. After reading the report, the doctor still suggested that I go to their hospital for a new examination.
After the Spring Festival in 2019, I left for Xi'an and did more medical tests at Xijing Hospital to screen for what was wrong with my body, and I was finally diagnosed with narcolepsy. During the visit, the doctor specially reminded that patients with narcolepsy should never drive vehicles and be responsible for the traffic safety of others and themselves.
The good news is that I got medicine there that cured the disease, and with the diagnosis from the hospital, my family understood a little more about the abnormalities in my physical condition. After taking the medication for a while, various symptoms that seriously affected my daily life have improved, and I sincerely thank my friends for understanding and helping me during this period.
Narcolepsy changed my life. 丨Pixabay
Originally, this story could have ended perfectly like this, but unfortunately life is not a story, and the medicine I took can only partially suppress the symptoms, although the situation of daytime sleepiness and nightmares has greatly improved, but these symptoms have not completely disappeared, and they still occur occasionally. I also almost stopped taking the drug during the epidemic this year, and the fluoxetine hydrochloride I took would have serious side effects if it was stopped, and then I finally prescribed the drug by online consultation.
The pandemic of 2020 really changed our lives, and my narcolepsy changed my life, and this is life, and we never know what the future holds.
Doctor reviews
Cao Li | Chief physician, Department of Neurology, Shanghai Ruijin Hospital
Narcolepsy is a rare "sleep-wake disorder" disease, with an incidence of about 0.033% in China, which is more common than in childhood or adolescence.
The main clinical manifestations of narcolepsy are: (1) excessive daytime sleepiness (EDS): the vast majority of patients will have frequent and multiple episodes of drowsiness during the day, and regardless of time, place and activity, general refreshing methods such as rubbing wind oil essence, etc., have almost no effect; (2) cataplexy attack: it is a sudden loss of muscle tone during the awake period, often gradually developing from the face and neck to the trunk and limbs, and the protagonist's knees are soft as one of the manifestations; (3) Hallucinations before falling asleep: manifested as terrifying or unpleasant dream-like experiences when falling asleep; (4) Sleep paralysis: the transient inability to move or speak occurs when the patient wakes up from sleep, similar to the "ghost press", lasting for a few seconds to several minutes, and can be stopped by others calling and pushing.
The definitive diagnosis of narcolepsy should be evaluated in combination with clinical manifestations, laboratory tests, and objective scales, mainly including the sleep latency test (MSLT) test for multiple naps during the day, polysomnography (PSG) monitoring at night, and serum human leukocyte antigen typing. There are currently no targeted drugs for the disease, and drug treatment mainly includes (1) central stimulants such as modafinil to treat daytime sleepiness; (2) antidepressants improve cataplexy symptoms; (3) Sedative-hypnotic drugs for the treatment of sleep disorders.
During the onset of this disease, the patient's alertness and muscle tone decrease, which will seriously affect the ability to study, live and work, and due to the atypical early symptoms, it is often misdiagnosed as epilepsy, transient ischemic attack or mental disorders, which brings great distress to patients.
In this way, a little one is sleepy and can't be careless!
Author: The house of birds
Editor: Li Xiaoqiu