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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 10 of 10. This is the beginning of the thread.
Posted by Molybdenum on June 23, 2008, at 22:30:56
Hi,
Well....I've now been diagnosed with severe Narcolepsy...*woohoo* add that to the list.... ;)
And I've got 2 questions that I'd love your thoughts on please:
1. Apparently the drug Sodium Oxybate = gamma-Hydroxybutyric acid, otherwise known as GHB is a very good treatment. Unfortunately it's apparently also a VERY popular drug of abuse which makes it very difficult to get.
So please tell me if you have been treated with GHB & how effective you found it to be (and the cost please)?
2. I also read that the drug Atomoxetine (brand name Strattera) is also a popular treatment to help keep you awake during the day. Atomoxetine is a "norepinephrine (noradrenaline) reuptake inhibitor". What I am unclear about is whether it would do me any good whatsoever, considering I am also taking a hefty dose of venlafaxine (Effexor) which is a "serotonin-norepinephrine reuptake inhibitor (SNRI)" *PLUS* mirtazapine (Remeron) which is a "noradrenergic and specific serotonergic antidepressant (NaSSA)".ie Does anyone know if the Atomoxetine would do anything that the Venlafaxine & Mirtazapine aren't already doing?
Thanks.. :)
Welcome to Club *yawn*
Posted by Phillipa on June 24, 2008, at 0:15:33
In reply to Do you have Narcolepsy???, posted by Molybdenum on June 23, 2008, at 22:30:56
How about Providgil? Love Phillipa
Posted by dbc on June 24, 2008, at 0:48:22
In reply to Re: Do you have Narcolepsy??? » Molybdenum, posted by Phillipa on June 24, 2008, at 0:15:33
I had this dream, it was a very realistic dream where back in the 90s i took some GHB and enjoyed the effects quite a bit. Its a bit hard to explain the experiance imagine if you mixed a benzo with stimulant and they coexisted perfectly.
This was all a dream of course and i would never do anything illegal.
It got a bad wrap as a drug of abuse because people mixed it with alcohol and died or accidently killed other people trying to use it as a date rape drug (yes in high doses it produces a profound sedating quality).
As far as drugs of abuse go i would rate it as high as alcohol. But given your situation amphetamine is probably the best choice and its infinetly more abusable.
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... ;)
Posted by cactus on June 24, 2008, at 6:35:02
In reply to Do you have Narcolepsy???, posted by Molybdenum on June 23, 2008, at 22:30:56
finally they got it right, I really hope you can get the GHB here in Oz. I think the chances might be tough though, especially with the reports around Melbourne at the moment. Xyrem sounds like it would be of huge benefit to you, you deserve to be able to try it. I just can't believe how strict the aussie government can be, they drive me nuts!!!!!!!!!!
I sent you an e-mail, peace out bro, C
Posted by Horned One on June 24, 2008, at 9:26:22
In reply to Do you have Narcolepsy???, posted by Molybdenum on June 23, 2008, at 22:30:56
I don't have narcolepsy, but funnily enough I wandered across some interesting stuff an Wiki yesterday on narcolepsy. Apparently the discovery that mice lacking orexin receptors developed narcolepsy. Orexin promotes wakefulness and has a powerful stimulant effect. I only found the page because I was looking for research on new sleeping drugs, and an orexin blocker is in phase 2 trials to treat insomnia. Presumably orexin agonists are also being investigated for the treatment of narcolepsy.
http://en.wikipedia.org/wiki/OrexinRegarding GHB, I used to take it on a regular basis years ago. It is a very powerful sedative. Recreationally I'd take about 1-2g in some orange juice, and it would give me a sort of beer buzz for an hour or two. 4g+ would knock me unconscious for about four hours. I once took a dose that size on the bus to college and passed out. Someone panicked and the bus driver had to call an ambulance. I woke to find to paramedics in the seat in front of me, asking me if I knew where I was etc. A very embarrasing experience. Doses of that size feel pretty unpleasent, lots of muscle pain, headaches and twitchiness. It also makes you go to the toilet, apparently by stimulating the contraction of smooth muscle - once used in childbirth for this reason. I only used it for sleep once and found it quite unpleasent at the doses needed to keep me unconscious. I think repeated dosing leads to accumulation of sodium in the body and it makes you feel quite unwell. I used to eat a bananna afterwards to try and balance it out with potassium.
I used to buy it direct from a pharmaceutical supplier in Ireland. I think I found the order form on a Google search back in 2001. It was taken off the search engines some time in 2003, but still exists for old customers who know the address. As of March this year I was told by another customer that they are still shipping, but they won't supply the US and certain other countries.
Any questions just ask.
-Horny
Posted by Molybdenum on June 24, 2008, at 17:59:18
In reply to Re: Do you have Narcolepsy???, posted by dbc on June 24, 2008, at 0:48:22
Hi dbc,
yeah - I've had a few dreams like that too ;)
Amphetamines are not good for me - well, methylphenidate anyway because they make me feel "speedy" and affect my judgement. So 2 side effects that don't go down well in a job. :(
In Australia, amphetamines are classified as "schedule 8". GHB is apparently "schedule 9" and also a prohibited import. That should give you an idea of the difficulty I'll be facing trying to get it in. First thing is to know what the cost is. If it's too high (no pun intended), then that'll sink this little idea very quickly.
From what I've read of GHB treatment in narcolepsy, you get it as a liquid & make up 2 doses & put them on your bedside table. Then you say goodnight to everyone, drink one and BAM - you're asleep.
You would have set your alarm to go off about 2.5hrs later, when you are to reach over & take the second dose. BAM again.
But apparently it really produces very good quality sleep. Strange.....
Posted by Molybdenum on June 24, 2008, at 18:26:17
In reply to Re: Do you have Narcolepsy??? » Molybdenum, posted by Horned One on June 24, 2008, at 9:26:22
Thanks so much Mr Horn,
I'll definitely keep an eye on Orexin.
And I can certainly relate to the "waking up in an ambulance" thing. Embarrassing I know. ;) The only thing more embarrassing is waking up in a hospital bed with a catheter. Very hard to run out the door with a catheter in place.... :(
If GHB is basically a sedative, I don't understand the great attraction. I mean "ecstasy" sounds like something anyone would enjoy, but GHB - I just don't get it. Abuse-wise, what's the diff between GHB & a few Xanax or other benzos..???
And please do msg me the Ireland details if you have them. That would help me find out if it's going to be too expensive or not.
Thanks again..! :)
Mr. M.
Posted by shasling on June 25, 2008, at 17:44:37
In reply to Re: Do you have Narcolepsy??? » dbc, posted by Molybdenum on June 24, 2008, at 17:59:18
Depending on how much GHB/Xyrem one does, one can be either high or unconscious. Obviously, the Xyrem aims for unconscious. It also happens to put on into a stage of sleep that is very restorative. I take 7 mg per nite which is like 2 cough-medicing size bottles per month, which goes for approximately 800.00.
I am in the US, don't know if it is sent anywhere else...
Posted by Molybdenum on June 25, 2008, at 19:25:22
In reply to Re: Do you have Narcolepsy???, posted by shasling on June 25, 2008, at 17:44:37
> Depending on how much GHB/Xyrem one does, one can be either high or unconscious. Obviously, the Xyrem aims for unconscious. It also happens to put on into a stage of sleep that is very restorative. I take 7 mg per nite which is like 2 cough-medicing size bottles per month, which goes for approximately 800.00.
>
> I am in the US, don't know if it is sent anywhere else...Thanks for the info,
wow, $800 / mth. Hmm.... that's not going to work out for me unfortunately. :(
I am curious about one aspect of it though - the site says that you take one dose when you go to bed & another 2-3 hrs later (you set your alarm apparently). I just don't understand why they don't make a delayed release version so you don't have to wake up. Odd... ;)
This is the end of the thread.
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