A Shade of Sleep

Hello everyone! I’d thought I’d talk about how I’d experience sleep and how I would wind down for sleep, and how that’s different before and after being medicated.

For a little information about my medication, I am on a sodium oxybate called Lumryz. There are other sodium oxybate medications like Xywav and Xyrem, but their main objective is to help us stay asleep through the night and get deep sleep. We have severely fragmented and disrupted sleep, so it’s important for us to have medication so we stay asleep.

Before medication, I would go to sleep really early, even if it was still light out. I would finish dinner early, around 5-6pm, take a shower, and lie down to sleep around 7-7:30. This is why I learned to love winter, because it would get dark super early and that meant I could go to bed earlier.

My sleep experience during the time I wasn’t on medication was really sucky. I didn’t even realize it wasn’t normal until I asked people around me, “Does it take you two hours to fall asleep?” and “Do you wake up during the night, like every 45 minutes?” It took me an extremely long time to fall asleep. I was so tired during the day so it was crazy to me how my body didn’t want to sleep during the night when I finally lied down.

After I finally got to sleep, I would wake up every 45 minutes to an hour and stay up for a while. I tossed and turned but I could never get comfortable. It seemed like I would never get back to sleep and it made me so frustrated.

When it was time to wake up, it was almost impossible for me to get out of bed. In fact, it got to the point where if I wasn’t on medication, I would wake up at 2 am and stay up the entire time until I had to get up for school. I figured that I wasn’t tired, so I might as well stay up instead of going back to sleep and getting groggy. Of course, this impacted my energy throughout the day. I like to describe my narcolepsy to other people as taking three all-nighters in a row, and to imagine how miserable you’d be.

During this time, I was so unbelievably exhausted. However, thanks to my medication, my routine changed drastically.

For those who are unaware of sodium oxybates’ side effects, they cause you to be nauseous, dizzy, and affect your coordination. The nausea is why doctors recommend you wait at least two hours after eating dinner to take the medication. Waiting longer is probably better, as you lower the risk of getting sick after you take your medicine, but I was always impatient (and tired) so I took it almost exactly two hours after eating.

I would eat dinner and make note of the time I finished so I could go to bed two hours later. My usual bedtime during the school year is 8 pm, so I had to finish eating at 6 pm. My parents and I had to work around my school schedule (and me staying late) so that I could finish eating before 6 pm.

I would take a shower and take my medicine at 8 pm. Unfortunately I would still doom scroll in bed for around 30 minutes which I don’t recommend because I got sick quite a few times, and doom scrolling before bed is bad for you because of the blue light your phone emits. Anyway, after I finally fell asleep, and I would fall asleep fast, I actually stayed asleep!

I would like to mention it took a couple weeks of taking Lumryz for it to be fully effective. I also did go up a few dosages before I reached a maintenance dose. I was extremely lucky to not experience more side effects with my medication like some others do, because I know how much you have to experiment with medications sometimes before you get your match.

I am extremely grateful for my medication! What’s your experience with sleep medication? Let me know!

Thanks for reading!

June 8th, 2026