Told I’d be on xyrem, prescribed something totally different.
So. Finally got my narcolepsy diagnosis. Doctor tells me he’s putting me on Xyrem, exact dose and everything- I have notes in my phone from it. Week goes by, no word from the pharmacy or him so I call. Apparently they filled an entirely different medication (modafinil) a week ago, and didn’t tell me it was ready or that it was changed?
I’m pissed. I feel like crying. All of this has been so overwhelming and I just want to be on something that will let me feel rested.
Stimulants make me feel like a zombie, and I don’t want to try it. I’ll try modafinil if it’s all they’ll give me right now, but I was so happy and comforted by the idea of xyrem and actually getting a decent sleep. I don’t even know what advice I’m asking for, but I’m freaking out. Should I push to try Xyrem first?
Posted Mar 12, 2025, 8:06 PM UTC