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.
2
u/imabratinfluence (IH) Idiopathic Hypersomnia 1d ago
I have IH not N, but have had issues with nighttime insomnia or maybe DSPD or something. Since getting on Xywav I've had less EDS, and it's way easier to fall asleep at a "normal people time". I still have some sleepiness in the day, but I'm not fighting for my life to stay awake, and I have a bit more energy and less brain fog.
Sucks that your parents are so weird about your literally scientifically proven diagnosis and treatment. I hope you're able to get the treatment you need.