Very bad day

Good thing I haven’t fallen out yet.well I had hope for the foundation medication assistance but now I’m rght back where I start no help their for EXYREM my anxiety has gone haywire ugh they had me on oxygen treatment is their another place for help to place to revive this med

Yes there is it’s calledCephalon Cares Foundation Patient Assistance Program … they got me my xyrem free of charge, best wishes to you.

I would love to have more feedback about Xyrem. Please tell me if it helps those of you using it and also anyone that had problems with it. My dr appointment to decide if I am gonna try it is February 1.

I'm not going to be mean about this but I want to let you know some things about xyrem. Xyrem is one of the most dangerous medications if abused by just a little bit. Most doctors will wait till the very last resort to give it to a patient. And I don't want to be mean but I am currently having to self medicate and i sleep to a point id be lucky if iwas up for 1 hour a day. so the struggle is mutual. Everyone's sleep pattern is differnt; ive been in ur shoes. just take a deep breath and read what we are saying, Your doctor isn't giving you the best treatment call the narcolepsy hotline. Get someone to go in with you and defend you. You gotta be able to describe everything, my doctor is finally changing my meds if i can ever afford to see them again.. which isnt happening lately. so im sleeping 40 hour sleeps lol and no that isnt an overexaturration. Just try your best to stay calm. Call xyrem them selves too. they have their own hotline. Xyrem is a thing you have to be recommended into. doctors cant juts prescribe you xyrem off the blue anymore in some states because of its potency to possibly kill you... so in order for you to b prescribed it its going to take time for them to cancel out the other medications. and xyrem is also bad with anxiety but anxiety comes with narcolepsy so i won't say too much about that. Just try to stay calm and understand. where i'm going with it. I'm sorry I hope I was some help, I know its probably not what you want to hear. but at least it can tell you why.

and if your looking for medication assistance and i guessed it wrong. GO TO CEPHALON CARES..

it helps i agree with punkin . they have commented on both ur topics with cephalon cares.. and narcolepsy hotline also has a company called caring voice collation.. If they can't help you then theres mor eyour not telling us tbh..

Xyrem helps some people, but others cannot take it. I have a good doctor, it was prescribed for me, but I had a negative side effect so a different treatment was necessary. If you are on oxygen therapy or any medicines all that has to be considered by you and your doctor. Be kind to yourself and work with your doc like a teammate.

Narcolepsy patients who find the right treatment right away are lucky. Usually there's no perfect answer because everyone is different and some of us are complicated, and that's not a bad thing. It's hard to hold steady but you can do it, I know you can. You and your doctor will find what works best.

Let us know, and your doctor's office know, how it works out with the medication assistance. Hang in there. You have friends here who want the best for you :).

can someone give me the numberto the narcolepsy i need help hotline

i m jus learning how to use this site (support group)

(866-■■■■■■■■ narcolepsy hotline

thank you very much will keep u guys updated

hey guys so i got through the to the assitance program i am now waitting on the call back from a case manger

yeay i got the call back from the case worker annd things are moving forward however i dont want to get my hopes up again

That’s progress. Good follow through, too. Best of luck!