An adult woman is sleeping on top of a floating green pill with Zs behind her

What My Insomnia Looks Like

Having both narcolepsy and insomnia can be a bit of a challenge when it comes to getting a good night's sleep for me. Unless I am overly exhausted at night, I have insomnia.

I take Xyrem at night to help me sleep, and normally people who take Xyrem fall asleep pretty quickly. But not me. I normally don’t fall asleep for about an hour or so almost every night.

The longest hour

That hour always seems like so much more than an hour. I do my best not to look at my phone or any other device because sometimes that can keep me up even longer. I don’t sleep with my TV on, so that won’t distract me either. I just lie there hoping that this will be the night I fall asleep right away, but nope, still an hour.

Lying there at night, I tend to think about things I am going to do the next day or what I still need to get done that I have been putting off for months. I always stay in bed and never get up to do anything because I feel that would just make the insomnia worse.

Waking up early, still exhausted

The most frequent time that I have insomnia is that hour after I take my Xyrem each night. However, I still get it at other times. Sometimes I will wake up around 5:00 or 6:00 in the morning and can tell I am still exhausted and have Xyrem in my system, but my body just won’t let me sleep.

Most of the time, I stay in bed and just lie there, and normally I fall back asleep within a half-hour. Sometimes I do get on my phone and check my notifications; that isn’t always my best decision. There are rare occasions that I wake up around 5 or 6 in the morning, and there is just no way my body is letting me go back to sleep. On those days, I will lie in bed for 30 to 45 minutes and then get up and get ready for the day.

Falling asleep for naps is easier

The least common time I experience insomnia is when I take my naps each day. Normally, I lie down and it takes me roughly 15 to 20 minutes to fall asleep. When that occurs, I just lie there and eventually, I fall asleep. I do have times where I have been lying there for almost an hour and I still haven’t fallen asleep, so I just get up and try to nap again later.

Insomnia affects people differently

In our 2020 Sleep Disorders In America survey, 63 percent of survey respondents with narcolepsy said they experienced difficulty falling or staying asleep in the past month.

Insomnia is so different for every person who experiences it. Some have more problems falling asleep, while others have problems staying asleep. Insomnia can change over time, or it can stay the same.

My insomnia has changed over time

For me, my insomnia has changed ever since being diagnosed with narcolepsy and started to take Xyrem. Before, I could fall asleep almost seconds after lying down, but could never stay asleep and would be up multiple times in the night.

Now, I have problems falling asleep, and for the most part, I stay asleep all night long. Insomnia is unpredictable, and you never know when it will sneak up on you.

Do you have insomnia? Do you have more problems falling asleep or staying asleep? What do you do when your insomnia kicks in? I would love to hear in the comments!

The 2020 Sleep Disorders In America survey was conducted online from March through July 2020. Of the 2,198 people who completed the survey, 105 were narcolepsy respondents.

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