Living With Narcolepsy - School, Demons, Getting Diagnosed

by K
(Quantico, Va)

I was diagnosed with Narcolepsy at the age of 18. When I was 14 I started getting sleepy. I would drag myself out of bed in the morning totally exhausted. I would fall asleep on the bus to school, wake up when I got to school. Zombie walk to 1st period. I would pull out my books or paper and pens. I usually was able to catch the first 10-15 minutes of class before my vision started getting blurry. It felt like my eyes were crossing but I am not actually sure. I would fight to keep them open. Then my head would start bobbing. Sometimes it woke me up when my head bobbed backwards, but not for long. I would eventually fall asleep. If I was taking notes or working on a paper or worksheet my hand would continue to write. I scribbled all over my papers and sometimes on my desk. I would talk in my sleep and often wake up mid sentence with everyone looking a me. I would catch a few more minutes of class and then fall asleep again. This would continue for each class except Gym of course. I loved Gym class because I was able to escape the cycle for 1 1/2 hours every day. I was a gymnast and a runner. I also attended gymnastics practice 2 hours after school each day which was great. Once I got home, I would sleep on the couch until dinner. After dinner I would go out and play frisbee, tennis, swim, etc... Then come home and go to bed.

This was the part of the day that I dreaded the most. Almost every night after my 14th birthday, I was visited by a black demon who would sit on my chest, hold down my hands and try to smother me. Sometimes it felt like I was being sexually assaulted or repeatedly slapped in the face. I would try to move my head to avoid the slap or cross my legs but I couldn't move. I would try to scream or beg it to stop but nothing would come out. It was terrifying. I didn't tell anyone about it until I was 19. I thought people would think I was crazy or lying or possessed. I'm not sure how long the assault would last, it seemed like hours but may not have been. I would eventually fall asleep. I would wake up a few more times at night but only visited once a night.

For 4 years I went to many doctors with no diagnosis. A few of them said it was in my head. I eventually went to a Neurologist who realized what I had when I mentioned a strange thing that happened a few times at a funeral. I collapsed to the floor and couldn't move a muscle for a few minutes. I also mentioned that my knees gave out when I said something that I thought was funny. He knew immediately that I had Narcolepsy with Cataplexy. I had some sleep tests to confirm it. I started medicine to stay awake.

The visits from the demon continued until I was 19. I did a college research paper on Narcolepsy and found out that some Narcoleptics also experience Hypnogogic Hallucinations. The text book description of it was exactly what I was experiencing. After reading about it, it went away. Hopefully never to return.

I am now 50. I take adderall to stay awake and naps in the afternoon. I always feel exhausted but it is not as bad as my teen years because of the medicine.