Hometown: Astoria, Queens
March 9, 2014
I would love to talk about how people manage narcolepsy outside of medication. Even if we are taking meds, we all have to take other steps. I am pretty disorganized and I'm not any better at organizing my life with narcolepsy where it matters most. This tends to lead to self-sabotage and it is a mess. Also: finding people to bounce ideas off of and to laugh with about this. I typically don't talk to anyone about the disorder. Everyone in grad school is exhausted, so I don't even bother explaining where I am coming from even though I am really struggling with the work.
I started experiencing cataplexy starting at age 13 or so, but wasn't diagnosed with narcolepsy until I also began falling asleep for 45 minutes at a time in high school classes. I was treated for cataplexy for a few years, but I rarely have attacks anymore and my suspicion is that my body learned to laugh differently to prevent them.
As a recent neurologist said, I am really under-treating the disorder right now. I am terrible at managing narcolepsy and sleep apnea. I am in the process of getting additional sleep tests and trying dental devices for the apnea. I currently don't take a daytime stimulant, (had complications with xyrem and nuvigil) but I'm looking into anti-depressants with stimulant effects like effexor.
I am a narcoleptic grad student who also has moderate/severe sleep apnea. Originally from Colorado, currently in Astoria. I always find it helpful to hear how others are managing sleep and wakefulness.