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A Typical Night of a Person With Narcolepsy

A common misconception about narcolepsy is thinking we sleep fine at night.

Many people believe that insomnia and narcolepsy are opposites, but that is far from the truth. I don’t believe I have ever slept through an entire night without waking up at least twice.

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?

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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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