Narcolepsy Support Group

I have asked a lot of questions in the past about Xyrem, other meds, and all about Narcolepsy. I just wanted to let everyone know that my son has been approved for Xyrem and it will be delivered this week. Our copay thankfully is only $25!! That was great news!! I am very optimistic that this will work for my little man and it will get him to feeling as normal as possible.... That is all I want for him!!! I will keep you all post on his progress. Thank you ALL for allowing us to have a place to feel like we belong with Narc. and for all of your understanding!! Wish him luck!!

Thats great news! I hope it works good for him. Good Luck! Keep us posted. Hugs Stacey

Post edited by: smd, at: 04/08/2013 06:45 PM

SMD... Thanks for posting, he was next to me when I read this and for the first time got him to actually read something from someone else with Narc. He has done fine so far, we started on friday night. He feels a little better.... I am hoping to see a great improvement in a few weeks!! He did however get a good nights sleep for the first time in over a year when this all started!! I wanted to cry that first morning after... he woke up and was laying there with a huge smile talking about him being able to sleep and that he thought he felt a little different!! Sleep is something most take for granted but it brought a tear to my eye to see that smile on his face!! I haven't seen that too much in the last year! His cataplexy is certainly still there... do you have that and did you notice a change in that very soon?? When did you see the effects of the drug??

im fixing to start taking it friday....ill let you know how it goes..i want the cataplexy part to go away for me too..

Good Luck!! Did they tell you that you can mix it with crystal light? That way it tastes better?? He is fine taking it that way!!

Post edited by: smd, at: 04/08/2013 06:44 PM