The Daze Before the Dream

by julie on October 18, 2017

This isn’t your average nap. Living with narcolepsy, my brain demands to go into R.E.M./dream sleep during the day. Pressure builds and I know it’s THAT time for my brain to do its thing. I get up from my cubicle & head out to my car, hoping not to run into anyone I know along the way because my propensity to have cataplexy is also building strong at the same time … and interacting w/ friends could cause me to stumble or fall.

My car is always strategically parked in the spot w/ the most privacy and shade possible. I roll down the windows, recline my seat and close my eyes — my brain switches over into its active R.E.M. turbulence for 15-20 minutes. (Without #narcolepsy, you would not usually go into R.E.M. sleep during naps.) So while this looks like peaceful or relaxing “napping”, it’s a bizarre and active experience.

Before medication, I spent my life drowning in R.E.M. dream sleep and I feel lucky that I only have to dunk in its waves once or twice a day now. Narcolepsy affects my daily life in other ways too, but this is one of the ways.

Learn more about the excessive daytime sleepiness of narcolepsy.

Watch a video here.

Photo from today’s nap – 10/17/17.

{ 5 comments… read them below or add one }

Bobbi Jo French October 20, 2017 at 12:26 pm

Julie,
I thank you so much for making this explaining about Narcolepsy so much easier. Also in the correct words. It’s so hard for me to think of the right words to explain it.

You are my inspiration..

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Cassie MacMillan November 6, 2017 at 3:39 pm

Hi Julie, I am at work using all of my will power to stay awake right now and I typed in “narcolepsy is killing me” into google as I’ve spent countless hours searching for help for my REM sleep that at this point I do feel is going to kill me – self inflicted or a bad accident. This picture of you in your car is so familiar to me as I have explained to so many professionals and ppl that I have to go nap in my car at work and before my eyes are even closed I am dreaming. The same thing happens to me every single night of my life for the last 5 years and 2 months. What medication are you taking? I am currently on Methylphenidate(Ritalin) that does help me with my day time sleepiness without having many side effects but Im so desperate for something to stop my REM sleep at night. I dread going to bed at night while at the same time can’t wait to crawl in and shut my eyes. I feel as though I have severe insomnia while I’m asleep. My brain fog is the worst its ever been. Do you have any suggestions for what medication can help me suppress my REM sleep and any suggestions of professionals I could reach out for help to?? Every single person I have gone to seems to have very little knowledge of this sleep disorder and its almost like talking to a wall. And as you know talking to friends and family for support can be more frustrating then helpful as no one actually gets it. Anyways I’m sorry for the long message, any suggestions you have would be greatly appreciated! Cassie

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Tracey November 30, 2017 at 8:14 pm

Julie, do you set an alarm or does your brain/body wake up automatically? Thanks!

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julie February 20, 2018 at 10:13 pm

Tracey- great question. I let myself wake up naturally. I never sleep longer than about 30 minutes if it is during the day. If I push my nap off into the evening hours, it can last up to an hour and I don’t set an alarm then either. However, I’ve heard that some parents limit their children w/ narcolepsy to take 20 minutes naps for more successful transition back to wakefulness.

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CJ January 16, 2018 at 4:30 am

Hi Julie!

I was wondering if you had any advice on how to talk to your boss about having narcolepsy with cataplexy. I graduated college, got a job, and was diagnosed all around the same time. I am not sure how to bring it up or what to say to my boss.

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