A Typical Night of a Person with Narcolepsy
As I was lying in bed the other night, my mind racing and my eyes open, I decided to share what a typical night is like for me.
Realizations about poor sleep quality
Prior to being diagnosed with narcolepsy, I didn’t think much of my frequent poor night's sleep. Everyone complains about how tired they are or how poorly they sleep, so why should I believe my struggles are any different?
When I started taking Xywav, a twice-nightly liquid that helps me sleep, I mentioned to a co-worker that I have to wake up in the middle of the night to take the second dose. She was shocked and said, “Wow, I would hate having to wake up in the middle of the night every night.” I wondered to myself, Doesn’t everyone wake up a lot during the night?
My nightly sleep routine
During the school year, I am better at my routine than I am during the summer months.
I typically start getting ready for bed around 9 PM. After doing my nightly routine, I take my first dose of Xywav. It can take anywhere from 30 minutes to an hour (or more if I’m stressed) before I finally fall asleep.
I usually lay in bed and read or journal, and then when I start feeling relaxed, I turn the light off and listen to a bedtime story.
Waking up frequently during the night
Once I fall asleep, I usually sleep for 2 hours or so before I wake back up as if I wasn’t even sleeping.
I get up and take my second dose, knowing it will still be another 30 minutes to an hour before sleep will take me away again. I am often self-conscious about tossing and turning too much and waking my partner.
Another 2 or 3 hours pass before I wake up again. Depending on the time, I lie around and possibly doze until my alarm goes off.
My sleep was nothing but dreams
That is probably the most frustrating part of having narcolepsy. Prior to taking Xywav, I would sleep an hour or so at a time before waking. The sleep I was getting was nothing but dreams.
I didn’t understand how most people don’t dream, or if they do, it is in small amounts. I can think all the way back through my childhood and remember the thousands of dreams that I’ve had. I still have so many dreams every night, especially once the Xywav wears off.
Experiencing deep sleep for the first time
The first time I took Xywav, I was blown away by what it was like to sleep without dreaming. I took the dose, my eyes closed, and it was just... black. I had never experienced that before. I wondered to myself, Is this what people without narcolepsy sleep like at night?
Although my body has somewhat gotten used to this medication, I still can’t imagine surviving without it.
Where are you in your narcolepsy diagnosis journey?