The Struggle of Living With Narcolepsy and Insomnia

One thing I have learned since my narcolepsy diagnosis is that insomnia is a symptom of narcolepsy. At first, I had no clue that it was a symptom because, before my diagnosis, I never had problems falling asleep. I always fell asleep very quickly, I just could not stay asleep all night.

For the longest time, I thought insomnia was only having trouble falling asleep at night, so I never thought anything of it. I then learned more about it and realized there are a lot more symptoms of insomnia.

Insomnia is a narcolepsy symptom?

At the beginning of my narcolepsy diagnosis, I didn't really have too much trouble falling asleep at night. When things in my life got a lot more stressful, that is when I started taking an hour or so to fall asleep at night, even with Xyrem.

After this happened for several months, I asked my doctor about it. She told me that insomnia is a symptom of narcolepsy. I was shocked because I never had this problem until recently. My doctor told me that there wasn’t anything we could really do to make it go away.

A frustrating one-two punch

Living with narcolepsy and having insomnia as well can be really tough. With narcolepsy, my body wants to sleep all of the time. With insomnia, my body won’t let me sleep. The constant battle between the 2 can be very overwhelming, in my opinion.

I can be so tired, but cannot fall asleep no matter how hard I try. It is very frustrating because I feel like I am stuck and there is nothing I can do about it. This is one of my biggest frustrations with this whole diagnosis, the constant battle between the 2.

Things that help me sleep better

Stick to a schedule

What I have found very helpful with my insomnia is going to bed at the same time every night and waking up at the same time every day. This has helped me keep a schedule and make sure I get roughly the same amount of sleep every night.

Resist bedtime snacks

I also have found that not eating anything at least 2 hours before bed has been extremely helpful. I used to be a bedtime snacker and ever since I have changed this lifestyle, it has been very helpful.

Yoga and meditation

Personally, I have found that light yoga and/or meditation before bed has helped me a lot as well because it helps me relax. Besides yoga and meditation, I try not to watch TV or be on my phone at least an hour or 2 before bed. Doing this helps my mind to wind down and not think about a TV show or something I saw on the internet. I find that clearing my mind before bed has helped a lot because I have noticed that if I have a lot on my mind at bedtime then my insomnia is a lot worse.

The things I have mentioned may not be helpful to everyone even though they help me. If you have any other things that help you, I would love to hear them in the comments!

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