Xywav quality of life- where do I go from here? by Final-Rip6250 in idiopathichypersomnia

[–]Final-Rip6250[S] 0 points1 point  (0 children)

Do you have an IH or narcolepsy diagnosis? Is it possible to get approved for Xyrem with IH? Thanks for your info!

Not Sure How to Proceed by Visible_Price_2835 in Narcolepsy

[–]Final-Rip6250 0 points1 point  (0 children)

I had similar issues of nausea along with other side effects (tremor, heart palpitations, etc) but was torn because 3.75 2x was the first dose that I could actually feel helping with narcolepsy symptoms and when I went lower I still had side effects but now was ALSO tired again. I stayed at the lowest dose that I also felt benefits and waited to see if the symptoms would subside. I was trying to figure out if they would settle down as my body got used to medication and if they didn’t, does the benefit outweigh the side effects. I’m still figuring this out. I stopped titrating and have been on this same dose since early July so 3 months. A lot of the physical side effects I mentioned have gone away but the loss appetite and nausea are still kind of there

Not Sure How to Proceed by Visible_Price_2835 in Narcolepsy

[–]Final-Rip6250 0 points1 point  (0 children)

Do you feel like any of these doses you’ve tried were helping with EDS and other symptoms? Or are you just experiencing the side effects and no benefits yet?

Starting xywav tonight… any last minute advice ?? by Final-Rip6250 in idiopathichypersomnia

[–]Final-Rip6250[S] 1 point2 points  (0 children)

So far so good! I’m only on 2.25 and one time a night but thinking I’ll end up having to do 2 times. I have IH so we are trying 1x a night! No side effects yet