nobody wrote:I'm still unconvinced that the benefits outweigh the risks - in addition to the cost and the huge PITA it is to get. like I said, I been on the fence about it for months, hoping to find something else that will be less risky, cheaper and easier to get.
If I could get it prescribed, I would try Xyrem tonight just to empirically determine if it would help me sleep better even though I don't have narcolepsy--just because I am so close to absolute despair from fatigue and tiredness.
If you are having suicidal thoughts, then do you have any other "backup plans?"
I mean, the other night I had a panic attack from not being able to sleep and was spiraling into the vortex that leads to suicidal thoughts. So I took 15mg Temazepam. It's only the 6th one I've had to take since getting it prescribed 4 years ago. Within 30 minutes I was stable.
Medicines are tools. Their appropriateness at any moment depends on the risk/reward ratio. Having suicidal levels of mental pain is very dangerous. Much, much more dangerous than Xyrem, IMHO.
Consider the history of gamma-hydroxy butyric acid (GHB):
It was sold in health food stores a few decades ago for $30 a bottle. People used it for legitimate purposes, and some abused it and may have wound up in the hospital. Then a few women got drugged with it without their consent, and date-raped. This is of course a heinous crime. The result was that GHB was banned. We ban any unregulated drug that causes a handful of emergency room visits or other incidents. Meanwhile alcohol, which has no redeeming medicinal qualities at all and is responsible for many 10000s of deaths a year, remains legal. And it still remains the date-rape drug of choice.
So the consequence for the estimated 200000 people in the USA alone with the illness of narcolepsy, is that the right to manufacture and distribute one of the most effective drugs for narcolepsy was granted by the government to Jazz Pharmaceuticals. They sell it as the sodium salt for roughly $5000 for a months supply.
The original plain old GHB was not a sodium salt, BTW, so it didn't have the high sodium drawback.
This is what the government accomplishes in its efforts to "protect us." Ruin the lives of 200000 to dubiously save a few.
But anyway, as you can imagine, since being classified a controlled narcotic and with the date-rape media coverage, propaganda against GHB became extreme.
I'm not trying to say that it is to be taken lightly. As with any depressant, it is critical to have a medical professional titrate a safe and effective dose. And anyone can have a freak reaction to anything.
As for "black box" warnings, they are a product of the regulatory system's complete inability to convey a sense of proportion to the consumer. For example, I was trained in Chemistry, and was lucky enough to have taken one of the very few chemical safety courses taught in any college chem curriculum.
We studied the material safety data sheet (MSDS) for common table salt--sodium chloride.
Well from the MSDS you would have no way of gaining an intuitive sense of the true relative danger of table salt vs. plutonium. The MSDS of salt sounded like it was one of the most toxic and hazardous substances known. Because the MSDS deals with the context of industrial scale spills, where a dust cloud may be produced that is dense enough to suffocate you. Context matters. And "safety information" is often written by "cover your ass" legal groups who only care about minimizing liability by scaring people into taking maximum safety precautions, even for table salt. But the result is that if you are simply holding a can of Morton's Iodized Salt in your hand, you get no sense of proportion of the actual danger. In that case, not very much, unless you try to eat a large portion--but unless you are seriously mentally ill the objectionable signals from your taste buds would dissuade you from continuing to eat it long before you reached a fatal overdose.
To summarize, basically if 1 in 1000000 people have some suicidal thoughts or wind up in the hospital with an adverse reaction to a medication,
even if the incident is not for certain caused by the particular medication, (ie., they may have taken other drugs, or there are undiagnosed contraindicating medical problems) a black box warning may result.
Have a look at this:
http://www.biopsychiatry.com/ghb/authentic.html
I hope you find an effective and safe treatment which leads you to improved health.