Has anyone changed from xyrem to xywave? What is your experience with either of them? Both have changed the taste, and what foods I eat, has that happened to you?
I am currently taking SUNOSI during the day and tried to switch to WAKIX because of my cataplexy and sleep paralysis. My insurance would not approve WAKIX until I tried XYWAV so I started XYWAV. I find it almost ridiculous that XYWAV is twice nightly dosing! My anxiety is worse and affecting my overall sleep because half the time I can't get that second dose accomplished between 1-2 am.
My doctor is going to start me on Skyrem (Xyrem with less sodium) and I was wondering what people's experiences are with it. Does it work well? Does it cause any negative side effects? Do you still need to take other meds to fight day time sleepiness?
Since diagnosed with Narcolepsy with cataplexy in 2018, I would sleep for a total of 16-18 hours over the weekend just to get rested up for the upcoming week. Now I've been sleeping approximately 10 hours if I had a day off. I still find myself dragging myself out of bed just to eat and try to be a human for a day. Does anyone hold a extensive amount of hours sleeping after working full time, raising kids and trying to just make it through the week?
Second paragraph explains my situation a bit more but my question is this - I see so many people on here and other sources and support groups that are on a regimen including multiple meds. I feel so guilty for even asking and it's dismissed, like all I am to them is an addict in their eyes. I don't want to doctor shop at all and I know it's trial and error finding one that gets it... is this a sign I may need a new provider? If not, how do I get the doctor to understand the actuality of it all… read more
I currently take Modofinal. Some times it works very well and sometimes I am not sure. When discussing this with my doctor, he asked me if I wanted to try the above (he told me the name but I can't remember it). He thought it might be helpful for me. Only one place that it is filled and sent out from?, that sounds a little scary to me. I have been thinking about it because I am tired of falling asleep all the time. It is embarrassing. I have been tinkering with the timing of the two to… read more
Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.
I have read into cataplexy and there seem to be more major attacks (falling over and things like that) and more minor attacks (drooping of the face was mentioned). If anyone has the more minor attacks, would you mind trying to describe what it is like? I tried looking on the internet but there is nothing from an actual person with cataplexy's point of view.
The reason I'm asking: I tend to worry about things so it could definitely be my imagination but I have noticed when I find something… read more