I'm a lot freer to do anything since being medicated with Xyrem. Specificially, it stops--almost entirely--cataplexy, which is embarrassing as well as dangerous. Now I get signals of pre-cataplexy, but stay upright, or at worst, lean into a chair. In addition, it keeps me more wakeful throughout the day, with many fewer episodes of wakeful dream states and automatic behaviors. There are no deletorious results, since it's possible to be wakened by fire alarm, for instance. (No need to walk anyhow, since it's best to crawl under smoke, right?) Jan Saecker
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.
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 w! ork.
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
No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.11.7/436 - Release Date: 09/01/2006
No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.405 / Virus Database: 268.12.1/440 - Release Date: 09/06/2006
Hi all I am in desprite need of someone to talk to. I am 28 yrs old and have 2 kids. I have been diagnosed w N for @ 5 yrs now and it still isnt under control...
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 ...
nettie1234@...
Sep 3, 2006 2:58 am
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....
Vic `I guess state laws for cover of Xyrem may vary depending on what state you live in. I am fairly certain If I wanted it I could get it from a doctor's ...
nettie1234@...
Sep 4, 2006 5:46 pm
So u tried Xyrem? it is $151 for 7 oz I dont have that kinda $ Thanks Vic nettie1234@... wrote: Vic `I guess state laws for cover of Xyrem may...
Also you might ask the doctor about elavil ( this is a known drug which has helped with N and pain for a long time. It is an antidepressant with positive sleep...
nettie1234@...
Sep 4, 2006 5:53 pm
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...
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...
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...
Oops....forgot to respond, Vickie! Yes, I have insomnia...the three forms of insomnia, according to my doctor. Yes, I have 6 sleep disorders, all of which...
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...
oh my where is all your pain coming from? We all gotta stick together. Do u have children ? 6 different types of sleep disorders? How can that B? I am sorry I...
I'm a lot freer to do anything since being medicated with Xyrem. Specificially, it stops--almost entirely--cataplexy, which is embarrassing as well as...
Hi Jan, What dose are you on and have you experienced any side effects? Cindy ... From: Jan Saecker To: Narcolepsy-Chat@yahoogroups.com Sent: Thursday,...
Hi Vickie, Regarding the cause of pain, I have fibromyalgia, arthritis, myalgias, arthralgias, bursitis, tendonitis, pinched nerves, herniated disks in my...
Hi Cindy! My heart goes out to you! Have any of the doctors tried a med holiday with you? This is when you are off all or most of your meds for 2-4 wks. I know...
Cindy I am so sorry for you and you are in my prayers but hon keep your head up I now it must be hard but you are LOVED. They say evrything happens for a...
Erin, Thank you so much for writing and for your support and encouragement. I'll respond as soon as i can. Helpful info. I appreciate it! Cindy ... From:...
Hi Erin and Vickie, I've been feeling so bad the last few days, I haven't been able to respond. Just wanted to send a quick thank you, though. Your support...
Having problems with message search?
Offline 
Send Email