u/Dizzy_Path

I've explained to a few people that I have a neurological sleep disorder and am never fully awake and never fully sleep and that my brain doesn't go through sleep stages at all, so I am absolutely chronically exhausted all of the time.

They look at me and go, "Oh, that's terrible. I get tired, too." AND THEN they go off about hormones or getting older or ask me if I tried melatonin/other "natural remedies" or go off about other nonsense that has NOTHING to do with narcolepsy or sleep disorders of the brain AT ALL.

I even had one friend who has known me for years start going off about how "everyone nowadays thinks they're dealing with something horrible and they're the only ones in the world who have problems and it's really not a big deal - they're just whining and being babies" as if me saying I had NARCOLEPSY wasn't a big deal. I promptly told him that I have a NEUROLOGICAL BRAIN DISORDER AND MY BRAIN LITERALLY DOESN'T SLEEP so that is why I am exhausted and had to stop coaching and doing other things I used to do. I am too tired to go fully off on him or anyone, but wow do I want to when they go full-idiot in response to a serious neurological condition. I mean, would they say that to someone with epilepsy for crying out loud? (We all know the answer to that.) And even after I start with "I have a neurological brain disorder" they still don't get it. HOW ARE PEOPLE THIS DUMB????

And NO, they have NO IDEA what it's like to have narcolepsy. NONE.

I don't understand how so many people are such bad listeners. It's like talking to the vacuum of space itself. I swear if I blew into one of their ears, I would hear a wind tunnel sound.

Anyway, I just wanted to vent to people who would actually understand what it's like to be the walking dead pretending to be alive in the land of the living for your entire life while pushing through soul-shattering exhaustion just because we had to. Thank you for reading. Rant over.

I was prescribed Xywav, and the same day I saw a mention that it contains sucralose. I have IBS-D and sucralose gives me instant diarrhea with pain, so I emailed my doctor that day and let him know I can't take it. He responded saying he will send in a new Rx for Xyrem, but there will be a delay in getting a prior authorization. I let him know that it's okay since I can't tolerate anything with sucralose in it.

Then I read that Xyrem can cause osmotic diarrhea...ugh. Is there anyone else here with sensitive intestines that has been okay with Xyrem?

For everyone who has taken Xyrem, what have your experiences with Xyrem been? If you've had side effects, what were your side effects and how long was it before the side effects went away?

I just got diagnosed with NT2 this afternoon (had my MSLT last weekend). My head is still kind of spinning over it. I never in my wildest dreams would have thought I had narcolepsy (since I had only really heard of the NT1 type and don't have cataplexy), but so many things throughout my life are making sense now. Anyway, I just wanted to say hi to you all. :)