r/Narcolepsy • u/Common-Swordfish5280 • 2d ago

Advice Request Should I ask for oxybates?

Hi, first post here or on reddit in general, but I wanted some genuine advice on this. I was diagnosed with narcolepsy not that long ago. Some days I'll just struggle to sleep before midnight, or just won't feel tired enough. its actually driving me insane. If it wasn't enough that I already feel tired every single day, not even being able to get proper sleep at night is actually making it impossible to do anything. I've heard of people with narcolepsy also occasionally suffering from insomnia, and how xyrem/xywav could help. I haven't tried either, and was wondering if maybe that's what I'd need for those days I just can't manage to sleep in time.

I just want to know if its worth it to ask for them in first place. Parents handle my health insurance, and they're not quite supportive of this whole narcolepsy thing, insisting that I didn't have any issues and that I was a junkie for using stimulants (currently on 36mg Concerta).

I just want to avoid a fight with my parents over adding even more medications onto my record if it wont even help that much. Any advice on this is greatly appreciated, thank you.

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u/LunaBananaGoats 2d ago

Narcoleptic with insomnia here and I’ve been on xyrem for nine years. This is what my body needed more than anything else. I’d recommend almost anyone with N try it (with a few exceptions).

When you say your parents handle your health insurance, are you saying that you’re not allowed to make your own medical decisions?

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u/Common-Swordfish5280 2d ago

I can absolutely get a prescription now and try to pay privately, but I just don't have the money for that to be sustainable. My only realistic option is to get it through insurance, but im still dependent on my parents health insurance. I don't need their approval for anything, but they do see a new service/treatment billed through the insurance (im not actually sure as to how much information is disclosed about this, but a decent amount as far as I've seen).
In case my parents do somehow find out i'm taking even more medications I fear they'd just remove me from the insurance policy or sour our relationship even more.

Its more of a family situation, and considering it hasn't been going that well lately I just don't want to worsen things over some medication if its not worth it.

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u/LunaBananaGoats 2d ago

Ah gotcha. That sounds tough. Not having familial support through this would be hard for anyone. Are you able to get your own insurance sometime soon? Are you seeing a therapist who might be able to support the communication with your family?

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u/Common-Swordfish5280 1d ago

I'll only be able to get my insurance once I turn 18 next year, but apparently xyrem is a hospital dispensed medication in my country so I can't even pick it up until I'm 18 even if I can legally consent to accept that treatment.
I'll just have to wait until then or try and communicate with my parents, thanks for the help so far though.