Narcolepsy – Back Story

I’ve mentioned before that I have several health conditions that negatively affect my life. I’ve discussed some of my experience with depression and have mentioned my cognitive impairment but have not gone into detail about any of them in particular.

So here’s some detail.

I have narcolepsy with cataplexy and hypersomnia.

Those 3 fancy words mean exactly this. My body has a hard time figuring out whether I should be asleep or awake so it wants to be both pretty much all the time. I’m tired during the day and don’t sleep well at night.[Narcolepsy] If I experience a sudden surge of emotion while standing (usually laughter or anger, in my case) I can lose control of my muscles and will collapse. [Cataplexy] I need between 9 and 12 hours of sleep a day in order to function, except for when I’m manic (but that’s a whole other disorder). Most of the time 10 hours of sleep everyday is what works for me. [Hypersomnia]

I wasn’t diagnosed until I was in my late 20s and have been undergoing treatment and developing coping mechanisms for 6 years now. I take medications to keep me awake and focused, I take a pretty hardcore medication to help me sleep, in addition to a couple of herbal sleep aids. Coincidentally, we discovered that one of the medications I take for my depression has been also treating my cataplexy.

Needless to say, these symptoms can make life fairly difficult. Having to sleep at least 10 hours a day can be complicated especially when you have 2 kids to take care of. I sleep almost as much as they do. For the most part, the cataplexy is well controlled by my medication. The worst part is the constant exhaustion, microsleeps that often occur (you know, that thing when a narcoleptic falls asleep out of nowhere) and having a hard time falling asleep and staying asleep.

Being a professional sleeper has some surprising benefits. I have a fantastic and detailed pre-sleep regimen and know all of the most effective tricks to help get a good night sleep (or not terrible as the case may be). If it works, I do it. Sometime I’ll write about those things but I’ve not got it in me today.

I said benefits, but really, at the moment I can really only think of the one. But at least there’s one, right? The thing is, after all this time, I’ve kind of gotten used to the narcolepsy and have learned to cope and work my life around it. Of my health issues, it’s really not the worst one.

So there you go. Rebecca’s Narcolepsy 101 Course. The more you know.



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