- This topic has 3 replies, 2 voices, and was last updated 6 days, 7 hours ago by Ferret. This post has been viewed 30 times
- April 7, 2021 at 10:25 pm #23879MoonChild7Participant
I’ve been diagnosed for IH & Narcolepsy without cataplexy in 2016. Just starting my second week of Xywav 3g twice nightly so far & like to know if anyone can share their experience with it or any feedback? Also has anyone had luck getting on SS Disability?
🛌✨💤April 8, 2021 at 7:41 am #23889FerretModerator
Welcome @MoonChild7 ! I hope that you find the help that you’re looking for here. Please spend some time reading the Non Rx Strategies section of the forum because there’s a lot you can do to help yourself beyond prescription medications.
We have not had anyone comment on actually using Xywav and would appreciate any feedback that you are able to provide.
Navigating the early waters of a Narcolepsy diagnosis can be hell on wheels. I am approaching my 35th year since diagnosis with Narcolepsy and Cataplexy. I’m here to tell you that it can be controlled and that you can have a long, happy and successful life.April 8, 2021 at 1:48 pm #23899MoonChild7Participant
Thank you! @Ferret Great I’ll do that 🙂 I’m open minded to trying Non Rx ways that can help. Most definitely, will keep updated on how it’s going. Oh wow & that’s refreshing & hopeful to know it’s possible to function normally living with it! How do you keep it controlled that you found helps you?April 8, 2021 at 2:03 pm #23902FerretModerator
@MoonChild7 Normal? Nope. I have to take a three hour nap every afternoon and I also sleep 7 hours at night. But I’m normal when I’m awake and you’ll have to go to the Non Rx Strategy section to find out more. What you eat is very important including NO SUGAR! And forget trying to cheat on that with sugar free substitutes because they have the exact same effect on insulin. I finally weaned myself off diet coke and am drinking water with fresh lime instead. Also NO ALCOHOL. Yours to discover. I do not take prescribed medications. Seen ’em come, seen ’em go. I was prescribed Tofranil to stop the cataplexy and ritalin to stay awake when I was diagnosed in ’86. Coming off both of them made me a vegetable for 18 months. No more.
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