Narcolepsy Support Group

hey pkarms....
bato< here about to be introduced to xyrem,
im currently taking provygil tablets.so ur brief complain on this xyrem is that theres is no change, no significant change @ all? anything i woild like info,please.

well, i am told that the dose i am being given is half of what people are actually taking to feel better. the main reason is becuase they want to ease me into the medication so if i feel better on less of a dose then thats for the best. which i agree, also if i have room to go up if i begin to build a tolerance over time. i am not sure how your dr will prescribe yours but mine raises my dosage a little at a time every 2 weeks. but so far, no i do not feel any better than i did before.

however, to finish my thought..lol..they did raise my dosage on the 1st dose of the night this time to 3g and then left the 2nd the same. in 2 weeks i will go back and they will raise my 2nd dose to 3 and so on and so on until i feel better. good luck with the xyrem,,i mean it really does help me fall asleep at night, but my sleep is so fragmented that this dose is not keeping me in the delta stage where we all need to stay to recharge. but i am hopeful, after going to the dr today that i will have some luck with it once i get to the right dosage. How will your dr. prescribe yours? do you know yet?

jealously awaiting my next appointment where hopefully i will be getting xyrem..... so interested, please keep us updated with how it is going... xx

why haven't they tried xyrem for you sooner? I hear this has the best track record for N so far.

Hey......
hi pkarms,thanks on reply
and great info,medical insurance is still on covering this new to me med.so,until that happends i will continue on taking Provigyl tablets that somehow helps along with my personal but safe over thecounter meds.

i hope insurance does pay for it for you...mine is over 570 dollars a month without insurance. luckily i am covered.I only pay 20 dollars. this med is hard to get also, it is a very controlled narcotic. I have been taking this new dose since wed and i can tell it is alreay helping me feel better. so that is hopeful.

Hey.......
Hi and Great Saturday Pkarm
thanks greatly on U'r response
glad to know that somehow and
in some way this Rx,xyrem is
helping.I'm just waiting on that coverage comfirmation.

Hey........
hi pkarms,Great Tuesday! my medical insurance is still viewing my request on this new and awaited rx;xyrem.anywho please tell me a bit of what meds U where prescribed in the past and if U COCKTAILED- Any over the counter meds or energydrinks to maximise the potency of any of those prescriptions,best time that U took or even if taking U'r meds on a full or empty stomach helped?
Anything that might help in coping with this incredible daily day experience....

I have taken provigil before and it made me extremely sick. Now I a taking ritalin and Xyrem
I found that it works best if you take the xyrem on an empty stomach. and make sure that if you dont wake up to take your 2nd dose to set an alarm and take it. Don't just sleep through it because you fall back into a bad sleep pattern the 2nd part of the night. It wears completely off after 4hrs. and if you dont take that 2nd dose its like sleeping for only 4hrs a night, which will make you feel like crap anyway.