Project GHB, Inc. has corresponded with many narcolepsy patients and we do realize the debilitating effects of this condition. However, our website is not mainly targeted toward narcolepsy. Nor are we against research aimed at treating this terrible condition. Our organization is targeted toward educating people about the abuse of GHB.

Information about GHB and narcolepsy can be found below. If you feel there is additional information we can provide to narcolepsy patients on our website, please let us know and we will be happy to provide it.

Breaking News Regarding Xyrem:

GHB and Narcolepsy

From Scientific American: "Narcolepsy ... affects between one in 1,000 and one in 2,000 people in the U.S. [Center for Narcolepsy Research says Narcolepsy affects more than 1 in 2,000 Americans.] Rates in other countries range from one in 600 in Japan to one in 500,000 in Israel."  Excellent Article as forwarded to us by a reader: http://www.sciam.com/2000/0100issue/0100siegel.html 

While lobbyists, parents, and educators are rushing to put GHB into Schedule I status, there is another voice crying out that GHB (in Clinical [Intermediate or Phase II] Stage under the name Xyrem™) is a necessary and valuable medicine. While GHB has shown promise in treating the horrible disorder Narcolepsy, and especially a form of it called Cataplexy, patients need to realize that it is components of GHB that aids in this treatment.

GHB shows HOPE for people with severe narcolepsy and cataplexy, but the research should continue until a longer acting, safer cousin to GHB is found. It won't be GHB.....it will be "GHQ" or "GHY" or whatever. Even the top narcolepsy/GHB researchers have said that the final product is several years from development. There is just too much NOT known about GHB to call it safe.

The approval of Xyrem (GHB) does not change the purpose of Project GHB, Inc. It may make the effort of saving lives a little harder.

Our concerns are this: Although the FDA approved this drug, they fundamentally have NO real knowledge about it. The FDA cannot tell you how it works or what the long-terms effects may be. Xyrem CANNOT be identified from Street GHB (if of the same pH level). And, we are concerned that the approval of Xyrem will send a false sense of safety to abusers everywhere.
 

Will Schedule I status of GHB mean no more treatment for Narcolepsy?

Even a Schedule I drug can be developed for legitimate medical purposes. Other drugs have been developed while initially in Schedule I. Anyone who tells you that the research would be stopped by properly scheduling this drug does not have the facts.
~ Trinka Porrata contributed to this section.

Read Orphan Medical Press Releases HERE

------> Viewer's comments These opinions are the express opinions of the writer.

Name: Sandra
City, State: Slymar, CA.
Date: 20 Sep 1999
Comments:

Here is a different angle to the GHB problem, one you probably haven't yet thought of. There actually are those of us who NEED this drug because we have a bizarre sleep disorder called Narcolepsy. Narcolepsy is more a muscle disorder than a sleep disorder. I fall continually and drop things all the time because my muscles "go to sleep" while I am wide awake. Narcoleptics need day time stimulants to stay awake and night time depressants to help us sleep. We are always, continually dreaming, 24/7. Because we are always in a state of REM (dreaming state) we never get to the restorative stage (repair) of sleep and as a result many of us have severe muscular pain. I am an Art professor and use to work for Star Trek making wall sculpture. Because of Narcolepsy I no longer can work. I am disabled. GHB is my only hope for once again living a normal life. The drug GHB has already been proven to help to overcome most of Narcolepsy's symptoms, at least the more severe ones. GHB comes the closest to a cure for Narcolepsy.

Although my heart goes out to those families who have lost a loved ones to the abuse of GHB it's precisely because of them, those who use GHB for recreational purposes, that our lives as chronically ill people have become a little more desperate. Now. what use to be readily available on Health Food store shelves is so highly illegal that those of us who desperately need GHB to change our neuro chemistry can not get it and would be imprisoned if we possessed it. We only can obtain it by being in a study backed by a pharmaceutical company who plans to market it for prescription use only. One out of 200,000 people have Narcolepsy (viewer's comment). I am one of the lucky ones that got into a GHB drug study. Only 200 of us in the United States have been fortunate enough to legally have this "cure" for our desperate disease. This drug will end up costing a fortune now that it will be prescription only. Many of us without insurance will never be able to receive it. This is all due to people who use GHB for fun and entertainment. Just thought I'd throw in another reason not to abuse this chemical. If you are fortunate enough to have normal brain chemistry, praise God and don't mess it up by taking GHB. Be kind to yourselves and those of us who need GHB to come close to having healthy brains: JUST LEAVE GHB ALONE.

From Sandra Mayer

*See  "Will Schedule I status of GHB mean no more treatment for Narcolepsy?"

Narcolepsy resources on the Internet:

Website with more links: SleepNet Sleep Link Reviews: