First symptoms,  My experiences

First experiences of Excessive Daytime Sleepines (EDS)

I was diagnosed with Narcolepsy in 2007 at the age of 21, but when I look back my first memories of the symptoms start around the age of 14. I can recall these memories easily because the transition from no narcolepsy to narcolepsy happened in a house we lived in for about five years. Only during the last year in that house, the symptoms started to show. 

An irresistible urge to sleep

I remember a time when I could study all day or read a book in my room without falling asleep. I also remember the first time I fell asleep in the middle of an exam and how strange it was. Some exams might seem designed to put you to sleep, but this was somehow different. During this particular exam, I kept dozing off. It was only for a few seconds at a time, but repeatedly, I was experiencing something I now know as microsleeps and REM intrusions. I did not understand this irresistible urge to sleep, and I had just woken up a couple of hours earlier, I should not be sleepy. What was just as strange was that I was having dreams during these microsleeps and adding to the confusion I had lost all my focus when awake. Somehow I kept on with the test. All of a sudden my attention kicked in and I saw the nonsense I had been writing; half words, random lines, and dots. I fixed it and finished the exam in a hurry.

This started to happen more often, not only at school but at random times during the day. I felt like I was not aware of the sleep until I woke up and thought “oh, I must have fallen asleep again”. I was awake, and somehow I was transformed into a state of dreaming without noticing it, and then snap! I was back to reality. Soon I started to feel sleepy during the day, and I began to fall asleep while reading, while listening to the teacher at school and while listening to the grown-ups talk. During one Christmas eve when my parents were doing last minute preparations for dinner, and my brother and I were excited about all the presents, I fell asleep on the sofa. I did not lack interest or excitement. I just needed sleep. 

Almost 20 years later:

Today, I still sleep during the day, while reading, listening to a lecture and even during family gatherings. The difference is how I manage these situations:

  • For reading, I switched to audiobooks and do something while listening.
  • At University I chose distant learning, but when in other situations, I pick a nap-suitable location.
  • When with the family, I say I have to have a nap or I just disappear for 20-30 minutes and my family knows what is going on.
  • I use snacks, standing up for water, bathroom trips or just walking around as a way to wake me up.

The list above is just an example of what helps me get through the critical time when there is no escape. Eventually, I have to have a real nap, that has not changed!

Have you experienced something like this? How did it make you feel? Please comment below!

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