r/Narcolepsy • u/Sweetsusie- (N1) Narcolepsy w/ Cataplexy • 2d ago

Medication Questions A medication pet peeve

I take Xywav and Sunosi. I take Sunosi in two 75mg doses (morning and noon) so that it lasts all day and doesn’t hit me all at once. Xywav kills my morning appetite, and Sunosi kills it for the rest of the day. Want to know when I do feel hungry? When the Sunosi wears off, about two hours before I need to take my Xywav again.

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4

u/DueEntertainment3237 (N1) Narcolepsy w/ Cataplexy 2d ago

I’ve basically started eating when I feel dizzy or based on social cues (when my kid says she’s hungry)

3

u/____ozma (N1) Narcolepsy w/ Cataplexy 2d ago

This sucks and I'm dealing with it too. No solutions, only commiseration.

3

u/riotousviscera (N1) Narcolepsy w/ Cataplexy 1d ago

these meds are terrible for appetite. when i was on oxybates i basically never felt hungry until after i took them. it was terrible.

maybe what if you tried taking the second Sunosi dose a little earlier?