I am on Xyrem, I have N but very mild C. I don't know about where you live, but I know here in the US, Xyrem is also dispensed for fibro.and a couple other things that I can't remember at this moment. Is it your insurance that is putting a halt to the Xyrem? If so can you appeal thier decision?
Good Luck
Cheri

Hi,
I have N without C. I was prescribed Xyrem after stimulents made my blood pressure spike. My doc is a neurologist and he expalined that he had to be registerd to prescribe it and I had to be registered to recieve it but that wouldn't be a problem. I am in Ohio. Perhaps it would be helpful for you to call the Xyrem Program at 1866-997-3688. I talk to Thersa but I am sure any nurse could help. Also I have been on it for about 10 nights now and I am very pleased. I actually feel pretty normal most of the day and haven't experienced any side effects. Good Luck!

i live in the uk , its not insurance that is stopping me from getting xyrem , my neurologist applied on my behalf to the P.C.T ,for funding but i was refused , i have read alot on xyrem and the changes it has had and so many people , its turned they lifes around , and that is all i want is my life back , i feel like a corpse with a pulse , i am not as bad as i was before i was on medication , but even whilst on me tablets i have no life outside my home because of sleep , i have to manage my medication the best way i can so that i am awake when my kids come home from school , i get so exhausted doing the simplest things , like housework , shopping etc,i wish i could do normal everyday things like every one else , thank u for replying

Do you have the suppliment Melatonin available in your country? I took every night for years before I was diagnosised and I believe that it is what kept me going so long.

i have not heard of melatonin , whats it for ,i can have a look for it , am glad to here that your doing good on xyrem

http://www.webmd.com/sleep-disorders/tc/melatonin-overview
That is a website that talks some about Melatonin. I am trying to find some info I found before about melatonin and narcolepsy. My personal belief, based only on my experience (Disclaimer-I am not a nutricianist nor physician)is that one "side effect" of my taking melitonin for so long is that I am very senitive to light. Not that I need sunglasses or anything like that, but I cannot doze off if there is a light on. I have not experienced the falling asleep during the day stuff since I started taking it. I had never connected the dozing stopping directly to the melitonin. Back then, at least 20 years before my diagnosis, I thought I was having trouble staying awake during the day because I wasn't sleeping through the night (I would go to sleep ok but wake up a few hours later and find it very hard to get back to sleep) I thought the only reason I wasn't dozing anymore was because the melatonin just made me sleep better. Only later did I understand that it helped by not only helping me sleep through the night but also by increaing my light sensitivity. Does that make sense? I feel the need to comment, out of respect to my sleep doc that he is leary of all suppliments because they are unregulated so you can't be sure of purity nor of consistent strength of dosage. I acknowlegde his concern but also continue the use because when I have stopped I find I don't sleep as soundly and as days pass I feel just lousier and lousier so I go back on it. There have been rare and serious incidences of contamination, etc, even with regulated and prescription medications so I rationize that it is worth the risk. Ang again legitiment research is being conducted on its use with various sleep disturbances including narcolepsy.

I don't have cataplexy and was on xyrem, but i didn't find it too helpful. I'm not sure if I just didn't give it a chance because of my fears and concerns about being knocked out like that or because i didn't also have cataplexy. This was about 5 years ago so kinda hard to really remember.

thanx 4 replying , i am just tryin 2 find out as much info as i can , thank u

I would do more research on cataplexy and talk to your doctor. I didn't think I had C either, until I joined this board and discovered that it can be something as simple as a muscle twitch.

I get an eye twitch when I am overtired and/or stressed out. Turns out it is C.
I get generalized mild weakness in my arms when overtired or before AB... that's C.
Droopy eyelids around a sleep attack...C
Muscle flutters in arms or legs...C

The problem is educating doctors to the fact that N is not what it was thought to be and C covers a lot more than just a total body collapse. It's the body not controlling the muscles and the shutting down of muscles for sleep, so it runs a whole spectrum of severity.

thank u , il look up about that

Yes, I too have learned that Cs can be very subtle...that that some N can have several every day and some one or 2 in a lifetime. Which made the discrimination between N/w and Nw/o seem even sillier. I used to get "shame rushes" years ago and I know wonder if that was Cs. When I read the description of the feelings during a C discribed in The Little Sleep...it seemed familiar-though the charater has the full blown drop to the floor Cs.