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Pinkfloyd
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Non-OUCH members-Part 2
« on: Jul 25th, 2004, 1:25am »
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read the part one first    Cheesy
 
My questions to you are these. Are you content offering your friends here, people you care about deeply, verapamil, topamax, lithium, 02 and a reduction of their pain? Content to offer them a joke and a cyber shoulder.  
Will you be content offering an online support group and an 02 tank, to your children, or grandchildren, if someday, god-forbid, they come to you with a diagnosis of cluster headaches?  
Will you be content telling them to check the archives of ch.com to find some jokes to put a smile on their face after they pick themselves up off the floor after an attack? Content to tell them to find some other cluster sufferers here that can understand their pain? This may be enough for you. Is it enough for them. Is it enough for you to have to offer them? Will the heartache you feel for them exceed that for which you and those near to you feel, because of your personal suffering.  
 
It is a wonderful thing to be able to make friends with a fellow sufferer. Something that we can all relate to and understand how important that can be. A close relationship with another sufferer is a wonderful thing. Would it not be wondeful to not need such a relationship, founded in the commonality of pain, but to build such a relationship upon want, rather than need. To make a similar friendship on a message board or at a coffee shop that doesn't include being able to share stories about pain and the cost of Imitrex?  
 
Would you not be more content knowing that your son or granddaughter did not have to suffer at all? To know that you had something to do with removing such a devastating disease from their life?  
 
If you would not be content with seeing the shackles that you have endured, to be placed around the bodies and spirits of future generations, I ask you to become involved in finding better treatments and a better life for them. Become involved. Join and become active in OUCH and help them fulfill their mission statement. I would like to publicly thank OUCH Canada for becoming the first OUCH org. to publicly support Clusterbusters and add a discussion forum regarding the psilocybin treatment.  
Join in on the work being done at Clusterbusters to help find a treatment that removes the pain of clusters and also the fear of the next cycle starting. Join the NHF, join the WHA, join something.  
 
If you are not involved in finding better treatments, and you think that I, or Clusterbusters, or the people at OUCH, or the medical establishment are jerks, and who the hell do we think we are, consider the fact that we are the jerks in which some of you have placed your children's and grandchildren's future, with respect to a possible life with clusters. Are you content leaving such important work to us and the medical establishment? The one that makes BILLIONS off Imitrex? The establishment that makes money off each and every attack? Do you trust them to find a way to reduce the number of attacks?  
 
They say the incidence of family members coming down with clusters is only about 10%. Well, that makes your children and grandchildren only somewhere between 10 and 50 times times more likely to get them than your neighbors kids. Of the approximatley 6000 people that have signed up to this site, only about 600 of them will have to watch their kids/grandkids suffer from them.  
 
There is much work to be done. If not for you, then for those you love. What dreams do you have for those you love?  
 
"Destiny is not a matter of chance, it is a matter of choice; it is not a thing to be waited for, it is a thing to be achieved."  
William Jennings Bryant  
 
If you tried the psilocybin treatment, whether it was helpful or not, I would appreciate it if you'd take the time to complete the surveys found at:  
http://www.erowid.org/plants/mushrooms/survey/mushrooms_survey_headaches .shtml  
 
and  
 
http://www.clusterbusters.com/phpsurveyor/index.php?sid=4  
 
If you have been diagnosed with clusters, I would appreciate it if you would take the time to complete the survey located at:  
http://www.clusterbusters.com/phpsurveyor/index.php?sid=5  
 
Not only would I appreciate it, afterall, who am I anyway, but so would all your friends that are working hard to find a treatment that will help not only you, but your friends and relatives that may now or in the future, suffer from cluster headaches.  
 
If you are so inclined to offer financial support for the research being done into the use of psilocybin as an effective cluster treatment, please go to the link below and make a donation to MAPS. Be sure to note in the comments section that your donation is to be used strictly for Cluster Headache Research.  
 
http://www.maps.org/support.html  
 
For all we know, it may turn out that psilocybin is not the answer and it's really a nutrient in the growing medium that mushrooms absorb that helps. It could be that the psilocybin trials will find something completely different that helps. The problem is that we won't find ANYTHING if we don't start looking somewhere.  
 
 
Thank's to all those that have already participated in some way and thank you in advance to all those that follow,  
 
PF www.clusterbusters.com  
 
 
 
 
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Re: Non-OUCH members-Part 2
« Reply #1 on: Jul 25th, 2004, 1:27am »
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None of the prescribed medicines offered me the quality of relief from this condition as does psilocybin, NONE.... and with minimal side effects.
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