dosaging Xyrem

Hi

Please bare with me I've not joined any groups before, I hope it's OK to ask about your Xyrem treatment, I'm waiting for LHB to approve it for me, I'd like to know what was put in place for when you 1st started taking it. I am in desperate need of it and I prey it works as nothing else has and I'm having anything from 10-25 drop attacks daily, at least 5 full collapse. I'm slightly worried about the first time I take it or the first few times as I'm a mum of 2 children my daughter is 17 and son 10, I can't expect my daughter to be responsible for making sure it all goes ok when I take this especially at the start. I don't have family close by so I can't ask anyone to help. What was it like and who was with you when you started your treatment?

I was diagnosed three years ago. I've never had severe cataplexy episodes, where i collapse, so my experience with Xyrem may be different than yours.

I recommend having someone who can check on you, at least once, the first few nights. I didn't have anyone with me and the experience was odd and a bit unsettling. I got used to it quickly, but people react different to different dosage. Take your first dose once you are in bed. Don't walk around after taking Xyrem.

Also, I started mixing mine with zero-calorie juice but eventually got used to the flavor and now I mix it only with water. You'll get used to it, and mixing with water, for some reason, makes it work faster.

Good luck with Xyrem; it has really helped me!

Hi

Thanks for your reply, I've read all the leaflets and side effects. My main worry was about taking The first few doses that's all.

Thanks again