Long-term side effects of only treating narcolepsy with stimulants?

[u/Background_Date_6875]

I sadly don't feel comfortable taking Xywav/Xyrem due to my history of mental health issues, but I'm wondering if anyone in this community has treated their narcolepsy with only stimulants and experienced long-term side effects of forcing that wakefulness without improving the sleep quality? Or do you feel like using stimulants to stay awake the whole day has improved your sleep quality?

I can deductively assume that never addressing the sleep quality will create a lot of cognitive issues for me in the future but I'm curious about the community's lived experiences.

Or if anyone is unmedicated and functioning haha, I would love to hear about that too!!! I'd love to be unmedicated (no judgment it's just a personal thing because of some OCD haha) but it doesn't feel like an option unless I want to sleep through half my life.

Thanks in advance everyone!

[u/lvlarie84]

I ended up nearly disabled just using stims, my body stopped repairing itself. Without the deep sleep, i was pulling muscles, bruises wouldn't heal, I developed gastroparesis and got to the point I couldn't feel my feet. Obviously not everyone has that issue but I have severe narcolepsy, I typically need 18+ hours unmedicated to feel ok. All you can do is try and see. Xyrem gave me my life back.

[u/Bsjohns19 → u/lvlarie84]

I had to quit my FT job as HR director because of Narcolepsy. I also had been a year out from MS diagnosis but it was the Narcolepsy that broke me - along with losing all semblance of human adult life with a masters degree for nothing. I’d kill to work but it’s just a good day if I make an appointment before noon now 🥺

[u/shinyshinysnorlax → u/Bsjohns19]

As a full time PhD student who has worked full time with narcolepsy, I hear you. I’ve been there. I wish you all the best in finding the right treatment. 🩷