Narcolepsy
 

Does anyone else here have Narcolepsy?

Hi Carrie Ann,

Welcome to the NeuroTalk Support Groups!

While you are waiting for any replies, you could check in the

Forum Search Feature

for any past posts or threads regarding narcolepsy.

I just did that myself and there are quite a few posts across various forums here.

Thank you, I will do that.

I have a diagnoisis of Narcolepsy with cataplexy and was curious if there was anyone else with the same diagnoisis.

If there is anyone who has questions about Narcolepsy and or cataplexy feel free to ask me. There are a lot of sterotypes with this diagnoisis.

I have narcolepsy without cataplexy. where do you get treatment?

Yes to Narcolepsy
 

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