I have had narcolepsy for over 25 years give or take a few. But the cataplexy is a new ingredient for me, I just had my first incident last week. After blacking out, and falling on the concrete floor I had a huge hemotoma on my eyebrow. Yikes. I didn't even try to catch myself. I had just had a stress released conversation with a surgeon and I was feeling very good. Wham.
But for the past four or five years I have had trouble finding doctors to help me. I also have severe sleep apnea and the machines don't work. Now I have complex sleep apnea. Impossible to find the doctors now willing to help. They don't want to write the scripts for the stimulant meds but I can't control the narcolepsy with out them. They don't get it. So very frustrating. I'm not trying to run any race or even to engage with the world. I am in my late sixties and am isolated. I just want to live the best way that I can. Is that so wrong? I didn't ask for this burden but am trying the best I can. I can't manage on my own anymore.
Best of luck to you