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Topic: non-OUCH members..part 2 (Read 304 times) |
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Pinkfloyd
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non-OUCH members..part 2
« on: Jun 29th, 2004, 2:29am » |
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read the other one first 
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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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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vig
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Re: non-OUCH members..part 2
« Reply #1 on: Jun 29th, 2004, 9:44am » |
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I wasn't content with Verapamil and the rest.
I'm still convinced OuCH hasn't grasped how profoundly this medicine works and it's sad to see OuCH not embracing it.
Psilocybin IS better than the other choices.
(the success rate is ~85-90%?)
www.clusterbusters.com
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never, Never, NEVER quit. -Winston Churchill
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ozzman
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We who are not as others -- Chaos A.D. --Sepultura
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Re: non-OUCH members..part 2
« Reply #2 on: Jun 29th, 2004, 10:07am » |
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Well said Bob! and Kudos on your efforts. Kudos to OUCH for the continuous efforts of growing into something.
So everyone, listen to what Bob says, get involved, do something. Bearable pain is NOT pain free.
Ozzy
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"Always remember rule ONE" --Lu-Tze
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Bob P
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Shut up Bob!
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Re: non-OUCH members..part 2
« Reply #3 on: Jun 29th, 2004, 10:27am » |
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As I read this post and Roxie's post on the Zomig nasal trial, the thought hits me; these are all trials of 'treatments'. While better treatments are a good thing, I can't help but look farther and think about a "cure" for clusters.
It strikes me that the real cure starts in the research into the cause of clusters. The work that Goadsby, Sheftel and the Italian doctors are doing. Only when a true cause is identified can a cure be found.
I've just this morning pointed this out on the OUCH business board. I would like to suggest that everyone join OUCH and encourage the organization to increase contacts with these cause/cure researchers. Offer ourselves and our organization to their research for this is where the real cure will be found. I don't think it will be found in looking at if and how long it takes Zomig to stop a cluster or what action shrooms have on the nerves that block clusters.
Not trying to take anything away from these treatment studies but I really think our time, efforts and funding would ultimately be better spent on the cure research instead of treatment research.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Pinkfloyd
New Board Hall of Famer
comfortably numb
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Re: non-OUCH members..part 2
« Reply #4 on: Jul 25th, 2004, 1:21am » |
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Somebody turn on the lights. I keep BUMPING into things
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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