Do I Have Narcolepsy Or I Am Just Being Sleepy?

by Minghao
(Sydney, NSW, Australia)

I am a 25 year old guy now doing my graduate study. I never thought I had any problem/condition with my sleep, although I have been very sleepy since I was a kid.

It seems I need a longer time for sleep than average people, which is about 9 or 10 hours a day if day time sleep is added. When I was in primary school and middle school, I fell asleep every day during classes and everyone just thought I was lazy or did not get enough sleep during the night. My daily schedule was pretty routined and I almost had 10 hours sleep at night at that time. Still during the day, sometimes I could not keep awake.

Things got worse when I entered high school. There were a few occasions when I fell asleep during riding a bicycle on the road. I can still remember how it was like. I was indeed sleepy but it was not possible to stop and have a nap when I was on the bike. When I eventually fell asleep, I lost control and made a sudden turn, and the feel of falling just woke me up and kept me awake for a short period of time. Then it all started again. I told my parents about this and they thought I was just tired. I still managed to get good results when I was in high school, since the knowledge learnt was not that demanding anyway.

When I got into university for my undergraduate degree, it got indeed miserable. I fell asleep in at least 3 out of 4 lectures and I could not keep up anymore. My friends in the uni tried to help me and woke me up during lectures but what happened was that even though I could be waken up, I could not focus at all. Every word came into and out and I could not understand anything! I was trying to scribe notes but in the end what I did write was just some funny fragments words which were taken down when I was half-asleep half-awake. The first two years were horrible. I started to drink lots of coffee and started smoking and thought these things would help. They indeed made some changes but not much. I was getting B or C in the exams despite the fact that I was really struggling hard to keep up.

When I entered the 3rd year of college, I changed my lifestyle. Sometimes I do not stress myself too much in the lectures. Instead, I did not resist the sleepiness during the day as I used to and I used night time to study. Still I fell asleep every now and then. But I did feel much refreshed after a short nap and was able to concentrate much better. My day was split into slots. I stayed awake, and when the sleepiness struck me, I just took 30 mins or an hour to sleep. I found taking naps was so helpful for me. Finally I was still able to graduate with an honours degree.

This is not the end of the story. After working in a research lab for half a year, I started to do medicine at the beginning of this year. I realised that studying medicine is much more demanding than everything I did before. This time I cannot keep up with my peers any more. I still study hard but I am not able to keep to my own schedule which I could sleep whenever I wanted. My timetable was adjusted so that I can have enough time to sleep during the night. However, how I try to stay awake when I feel sleepy, it is hardly possible. It feels like irresistible and quite often I do not realise that I am going to sleep and when I wake up, I just find myself having fallen asleep some time ago. Sometimes I am very awake, and mind clear at the beginning of the lecture, thinking that I will surely make it this time, but I still doze off probably halfway.

I thought I was normal and everything happened to me was because I am born to be a person that needs more time to sleep. My girlfriend has been complaining about my sleepiness. Sometimes when we go out together, either in shopping malls or on trains or buses, I can be sleeping! This situation annoys her a lot and she noticed that when I was sleepy but still awake and walking, my knees just got "soft" and let go. She did not find it funny though and she said there must be something wrong with me. Then I asked her what it was like when she was sleepy. She told me that she could still function and control her body at least. I asked a few other people and started to realise perhaps I am not normal after comparing myself with them.

I started web search and learned this condition called narcolepsy. Some features describe my conditions but some won't fit in such as cataplexy. I never pass out when I laugh. I went to see a GP and was told that I should get more exercise. I already quit smoking months ago and seldom stay up late in the night. I was also prescribed medication for hay fever since the GP thought I could not get enough oxygen and that might count for my condition. I used the nasal spray for a while and only found that nothing improved at all.

Now I am really feeling hopeless about my sleep problem. I still get into sleep when I am on buses and trains and sometimes I just miss the destination. In order to avoid this, I try to stand rather than sitting. Sometimes it helps, but when things get worse, I can still fall asleep when I am standing. My knees let go and sometimes I knock into other passengers which is really embarrassing. During the past few months, I even fell asleep when I was walking. It was not like sleep-walking thing. It was more like intermittent sleeps occurring. I fell asleep for a few seconds and then woke up. The cycles repeated again and again. I just could not control it.

When I am sitting at the table and reading notes or books, sometimes my mind can be 'out of control'. It feels as if I am dreaming, but I think I am still awake. The 'day dreams' are just like the dreams I have at night when I sleep. I start to dream even before I go asleep and there are just too many of them! I cannot predict when I start to sleep or start to lose control of the mind. I waste lots of time which I do not have much. Life is getting harder for me and I can barely catch up with uni friends. I also suffer from the pain in the neck and back, since I fall asleep when I am still sitting there and not able to put my head on the table.

I do not know much whether my parents have similar issues but my mother does ask me sometimes if she has fallen asleep or not, which is almost impossible to answer, since she is the only one capable to telling that.

I am still not sure if I am abnormal or not. I need to know if other people are like me as well when they are sleepy.

Thanks for this excellent website for letting me post my story here. If possible, can someone tell me if I am sick or not, please?

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Kevin: Hey Minghao, thanks for sharing your story. It does sound a lot like you have the condition narcolepsy. Excessive Daytime Sleepiness (EDS) has been extremely high for you, the weakness in your knees you describe actually does sound a lot like a mild-medium form of cataplexy, and the day dreams you described sound like what are known as hypnagogic hallucinations. All three of these are the trademark symptoms of narcolepsy, and you can read more about them here.

Unfortunately, many doctors just aren't trained to be able to pick up on what is narcolepsy and what is not. Getting exercise or using a nose spray is not going to help at all. What is going to help though is staying persistent and finding a doctor who has experience with narcolepsy and will be able to prescribe some treatment that hopefully will help your energy levels and ability to study medicine and interact with your girlfriend.

All the best with your quest! Feel free to let us know how it goes.

Warmly,
Kevin

(Please keep in mind that I am a student of sleep science and not a medical doctor. Please take any thoughts I give with my background in mind.)