Posted by Molybdenum on June 24, 2008, at 1:24:59
In reply to Re: Do you have Narcolepsy??? » Molybdenum, posted by Phillipa on June 24, 2008, at 0:15:33
> How about Providgil? Love Phillipa
Indeed Phillipa,
I recently went to hospital for another overnight sleep study plus a daytime MSLT = Mean Sleep Latency Test, ie every 2 hrs they turn off the lights & monitor you while you "try" to fall asleep. It's an incredibly BORING way to spend a day. I only signed up for the MSLT on the slim chance that I would qualify for the govt subsidised modafinil (Provigil). Neither the doc or I thought I had a snowflakes chance in hell. You have to be EXTREMELY narcoleptic to qualify for the govt subsidised Provigil.
Turns out I am severely narcoleptic.!. And it's so severe I actually qualify for the govt subsidised "name brand" modafinil...! I mean, it's not good about the diagnosis. I was categorised as having severe Central Sleep Apnoea - which has now subsided & I now have narcolepsy in its place. In subjective terms it doesn't make any difference - I'm still chronically tired.
The good thing is that I'll now be able to get all the modafinil I need for $5 a month ($30 when I get a job). Plus there's a lot more treatments for narcolepsy than there is for CSA. One very good treatment is the Sodium Oxybate, aka GHB. But unfortunately because it's such an addictive & popular "street drug", it's banned just about everywhere on Earth (script or no script).
Your lucky in the US, because the manufacturer (Jazz Pharmaceuticals) spent a lot of money to convince the FDA that it is a great treatment for narcolepsy. It was a worthwhile investment for them because your population is 293 million. So a very large & reasonably affluent "narcoleptic" market for them. So you can actually get it in the US, albeit there's some very strict criteria you must meet and it comes direct from a single pharmacy apparently. Maybe they deliver it in an armoured car...? ;)
The really depressing thing is that here in Australia, our population is just 20 million. So it's not worth Jazz putting in the same sort of effort trying to get it approved here. :(
I'd just like to know if anyone here has actually been treated with it. There's a very slim chance my doc could get a special permit & legally import it for me. More snowflakes in hell... ;)
poster:Molybdenum
thread:836130
URL: http://www.dr-bob.org/babble/20080617/msgs/836149.html