A Shade of Sleep

Hello everyone!

I was diagnosed with narcolepsy in late 2024. This was after the sleep study and various tests, which I’ll explain here.

I was really lucky to see a sleep specialist + neurologist so quickly, as many of the ones that me and my parents looked at were booked very far out. Like months. However, I was able to see one in just a couple weeks after I had gotten tired of living the way I was. I was tired of being tired.

That day I had gotten picked up early from school, and we went to see the neurologist, who we later found out specializes in narcolepsy and was involved in the drug trials for Lumryz (A drug that treats narcolepsy. Also referred to as sodium oxybate.). He recognized what I had immediately and pointed it out. That was the first step in my diagnosis journey.

I felt relieved but still wary of what he mentioned. I thought, “Narcolepsy? Don’t people with narcolepsy just fall asleep randomly? I don’t do that.” I’m not sure if this a common experience of narcoleptics when they’re being diagnosed, but it was for me.

I started out with an EEG. Essentially they put probes on your scalp and watch your reaction to flashing lights. I think they’re testing for epilepsy here. However, I was just worried I was going to get a migraine as lights are a big trigger for me. Alas, I walked out migraine free thankfully.

Next was my sleep study. They put more probes all over my chest, head, arms, and legs. It was definitely a little uncomfortable. Also the hospital pillows absolutely sucked. I don’t know about anyone else, but I need a lot of support on my head in order to sleep comfortably. On these pillows, my head just sank flat on the mattress, which gave me a headache. Anyway, I slept as well as I could despite the circumstances.

The sleep specialist woke my parent and me up from sleeping around five in the morning. Even with my school sleep schedule, I am not used to waking up this early. It shocked me when the doctor came into the room and turned on the lights without any warning. I was definitely in for some extreme exhaustion.

The next part was the napping portion. There were several times where I almost fell asleep outside of the naps, but they are really strict so that you don’t. My parent had to warn me a couple times that to not interfere with the results of the study, I had to stay awake between naps. It was absolutely insufferable though.

Each nap I felt like I didn’t sleep, which made me worried for what the results would show. However, after reading multiple posts online about this phenomenon, I decided to just try my best to keep napping every time I was instructed to have one. They sent me home around four naps later.

The last test was to examine if I had cataplexy. Unfortunately I do not remember the name of this test, but I know that it was homebound. They placed more probes on my scalp and sent me home with a camera and a little bag holding all the wires. I had to stay in front of the camera for majority of the two days, so I just stayed home and did it.

The technician came a few days later and removed all the sensors and took the camera with him. I was glad to be able to finally take a shower and wash out all that sticky goo that built up and got tangled in my hair. It was not pleasant.

My results came a few weeks later, to which we discovered that I had type two narcolepsy! It wasn’t a surprise at that point as my parents and I had already done tons of digging online to see what narcolepsy was all about. We learned many things in the articles and forums we read, and we decided before we got the results that there was a great possibility that I had narcolepsy.

That’s my experience with getting diagnosed with narcolepsy! I know that everyone’s experience with getting a diagnosis is different and for some, exceptionally difficult. Hopefully one can share their experiences here, or many!

Thanks for reading!

June 1st, 2026