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Yes, Vickie, NORD pays for my Xyrem in full, thank God! I could never afford it! Never! My monthly prescription cost is $3,000! They are out of their minds!
Thanks for the encouragement. I really need it right now. The past 6 months have truly been a nightmare. The pain I experience is out of control. I took too many tylenol one day (in addition to my pain killers, anti-inflammatories, and muscle relaxants) in too short a time (in an attempt to gain some control over my pain), and ended up suffering from Tylenol toxicity...had to go to the emergency room. That was pretty bad. They told me I need to be involved in pain management control or something like that...but none of my doctors even suggest this. I will follow up on this, though. The problem is, I feel so bad every day that I cannot even motivate myself or find the energy or stay out of pain long enough to do anything, including calling or getting to the doctors. Forget about cleaning my house, getting paperwork done, errands, etc., etc. I'm having a very tough time.
So THANK YOU! I really needed to hear those words. Not much support on this end either. Makes it harder, I think. Well, I still have my sense of humor, thank you God! Makes life easier, that's for sure! Off for my nap...hope this email made sense...I'm exhausted, as always! :)
Cindy
----- Original Message -----From: VICKIE KEMMERLINGSent: Wednesday, September 06, 2006 10:13 AMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic's
HI so you have insomnia. Well that is a bummer too. But with help from nord they pay for it right? I feel for you I hope they find something to help you Take Care and dont give up yet I know it's hard I dont have anyone supporting me except strangers.Hi Vickie,I'm sorry to say it's not helping me to feel better at all, but don't let my experience discourage you. Lots of people are benefitting from it.I simply don't understand it. It's enabling me to sleep for 5-8 hours per night whereas before I was only able to sleep 4-5 hours per night, so why don't I feel better? More rested? In fact, I feel worse! Getting through the day is a nightmare. I feel absolutely awful from 5 or 6am (when I get up) until 6 or 7pm. I mean, so awful, I wish it would just end! I think this is a side effect I am experiencing...I may have to go off of Xyrem, but then I return to no sleeping...and the long-term health problems that inevitably brings. Oh, well. I'm at a loss at this point.BUT, I wish you luck and hope you are one of the lucky ones! Lots of people have said their lives have changed dramatically as a result of using Xyrem.BTW, the cost is about $1,000 per month. The program will send you an application (not too long at all) and then it takes a few months before they approve/disapprove...don't know why it takes so long. Good luck!Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Tuesday, September 05, 2006 11:22 AMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s
Thank You so Much How do u like Xyrem? Vic
Cindy <cinmcw@optonline.net > wrote:Hi Vickie,NORD (National Organization for Rare Disorders) has a financial assistance program that may pay for your Xyrem if you qualify. I receive Xyrem for free through this program.Cindy----- Original Message -----From: VICKIE KEMMERLINGSent: Monday, September 04, 2006 1:11 PMSubject: Re: [Narcolepsy-Chat] Fellow Narcoleptic' s HI I am on Ritalin and adderal right now and soon the adderal will have me at 105 lbs and a heart rate of 122 at resting. I have been on just about everything. The one med my dr wants me (Xyrem) to be on my ins will not cover. It is comparable to the date rape drug I am at a loss School starts tomaorrow and there is nothing I can do. It is really easy to give up. I dont care if I am sleepy all day I care aboout getting my son to school on time :( Vic
nettie1234@aol.com wrote:Vic Do you have a doctor who will prescribe medicines which you can take in the early evening? Around 6 pm so you get enough sleep to be able to rise and function You need to be able to function for yourself and your child. I dont know what medicines would help. I am not a doctor I am a person w N It has gotten worse as I get older but Ihave other problems I function best when I take my meds between 6-7 My husband was amazed at how awake I was at around 7 am I am usually very much asleep in the morning when he leaves for work.Any way best of luck See if you can find an MD who is open to all \treatments for N and try to help yourself through a diet high in protein and vegetables and low in sugar/saturated fat.I find sugar and caffeine cause more daytime sleepiness. JB
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