Jennifer L.

Location:

Astoria, NY
Hometown: Astoria, Queens

Member since:

March 9, 2014

What would you like to talk about at our meetups?

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.

How did you find out you were narcoleptic?

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.

How are you treating your narcolepsy?

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.

Introduction

Hi! I am a narcoleptic grad student who also has moderate/severe sleep apnea. Originally from Colorado, currently in Astoria. I learn a lot from how others live their lives so I wanted to find out how people in NYC are dealing with this.


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