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?
I take Xyrem and it has really helped me get the life I never thought I could have. Just be careful with it and feel free to call the distributors for any questions! They're super nice!
I’m on Xywav for 2 years now. I don’t like getting up for the 2nd dose 2.5 hours later. The problem I hav is if I wake up before my alarm, I sometimes try to get up & I feel like I’m drunk. I’m unsteady so I fall. I just have to remember to stay put if I wake up.
Recently switched to xywav and it has been a challenge. First week seemed ok, following week began waking after one hour or less, then came the gastrointestinal distress which I think is what woke me up, then sleep walking and falling. Doctor adjust dose down by 0.75 grams and that has helped so far. Will be titration up to maximum dose slowly to mitigate side effects
I think maybe you mean Xywav. I was switched from Xyrem to Xywav. Only difference I have noticed is the taste, which you get used to. Otherwise, it’s the same dose as Xyrem and I sleep same amount too. Xyrem and Xywav have proven to be enough for me to get deep enough sleep that I have never required a daytime stimulant, however, I have noticed I have been feeling a tad bit sleepy throughout the day, but it is not overwhelming enough for me to mention it to my doc.
I have not ever taken it.
We never share your personal information with anyone.