Narcolepsy

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I have always had a sensitivity to sucralose so I cut it out of my diet. It causes me to have headaches and stomach issues. I just started Xywav and it’s working for me which is amazing. However , it’s bittersweet because I am not sure if I can tolerate it long-term due to the side effects from the sucralose.
Karen supported: REMOVE SUCRALOSE FROM XYWAV
I have N1 and a sensitive gut. I'm finally on a dose of Xywav that allows me to not sleep regularly during the daytime without stimulant medications (it's taken almost 2 years to work up to this dose). but now I'm having some severe gut pains. I'm finally awake all day but now i'm in pain all day, over a non-essential ingredient of the thing that gets me functioning. I would much rather have a nasty tasting medicine than all this trouble. not to mention the cost of all the doctors visits trying to figure out why my stomach has been hurting so badly. please! I just want to live a relatively normal life with minimal side effects from the medication that makes me able bodied.
julia supported: REMOVE SUCRALOSE FROM XYWAV
Diagnosed with IH in 2010 and prescribed Xyrem and stimulants. Been taking this combo successfully for 14 years. But my new insurance company as of 1/1/25 told me I had to switch to Xywav for IH. So I did, and have the worst flare up of colitis in years!! I am not supposed to consume Sucralose.
Allison supported: REMOVE SUCRALOSE FROM XYWAV
In my struggle with IH, I've found it very difficult to maintain good gut health over the years as I often don't have the energy to prepare fresh and healthy meals. I do my best these days to be healthier to maximize the energy I can get out of my body, and I feel that gut and brain health is really important for that. Xywav has been a life-changing treatment so far for me, and I'd happily drink a few bitter milliliters of liquid each night knowing that I'm getting the benefits of the medication without putting my gut and brain health on the line. We would love to have a sucralose-free option! Bitter is best!
Olivia supported: REMOVE SUCRALOSE FROM XYWAV
Sucralose causes almost immediate migraines for me. I can't take this much-needed medication unless sucralose is removed.
Juliana supported: REMOVE SUCRALOSE FROM XYWAV

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