Narcolepsy Support Group

it really takes awhile they start you off at the lowest possible microscoptic dose and go from there. Frustrating, huh?

Hey......
Hi everyone,I greatly apreciate
all coments and questions to this Rx:xyrem,since I'm to start on it as soon as my medical ins,covers.

9th june............ and counting. hopefully, by then, my Primary Care Trust (local health authority) will have granted permission to my consultant for me to have xyrem....

Hey.....
hi bubsmum,hang in there and try not rely too much on this
new to U RX;Continue on U'r daily day living and even adding some Cardio workout of U'r choice as a great distraction....It really helps me while I'm on Rx; Provigyl and Noze.

i am feeling a lot better! actually i have been too busy to be on line! isnt tht great! xyrem seems to be helping a lot!

Hey.....
hi everyone and cheers!
thats great news Pkarms..
so U'r now getting the great benifits of what this Rx:-is soposed to deliver?always great to know what is to expect on any Rx,specially the step by step as U have been sharing this,Thnks.
I on the other hand am still on Rx,Provigil and finding different ways to cordinate the intake timing throughout the week and on my off days from work.I got say it es not the best Rx,for a great quality of better life,but I could be doing worst...anywho life is great.

I have been on Xyrem since October 2006, I started at the 2.25g 2x nightly and am now up to 3.5g 2x nightly. On my Epworth sleepiness scale since October 2006, I have dropped from a "16" to a "12". Xyrem has helped me immensely. It just took a lot of time, 3 months for my friends and family to notice what a difference that Xyrem made in my life. I think I'm finally at a therapeutic dosage level at 3.5g twice a night.
The unfortunate part is that waking up for the second dose has become disruptive to my sleep partner, friends and family when waking me up to take it.
Alarms that shake my bed and emit loud sounds don't wake me up, and now it's to the point where my sleep partner has to completely wake up in order to wake me up to take my second dose.
It's so difficult and causes me to feel badly and dependent upon others.
I'm looking to meet others with this problem who have developed techniques to wake up for their second dose of Xyrem without being disruptive to others' sleep and without my being dependent upon them.
Those who are just starting out on Xyrem, stick with it, it really helps and will continue to get better. It treats the cause of Narcolepsy, not the symptoms of Excessive Daytime Sleepiness.

Yes, that is hard on your sleep partner, yet it works right? it WORKS! Yeah!

Hey........
hello everyone,
hi Genetic,thnks Greatly on U'r personnal experience and ongoin of Rx:Xyderm,it is to me
and I'm sure to other members a great information
of this.THNKS!I am at this time still on Rx: Provigyl until Rx;Xyderm is aproved by my medical insurance,not complaining since my excisting Rx,somehow helps me through work and
part of the rest of my day with my kids...
Again -thnks Celtic on that great info.

Hey......
P.S,Celtic sorry to hear on the downside of Rx: Xyrem of not being able to wake up on u'r own and having to rely on U'r better half,I'm sure the group here will come up or invent a great gadget to take burden of U'r family members to get U up for that 2nd doze.We'll work on something,in mean time let U'r better half to hang inthere with U.