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My mother just called me about an article in the Big Spring ( Texas ) Herald yesterday. That is our old hometown newspaper. Lee Ann and I grew up there and my mother still lives there.

All I know is my mom said it is about someone who committed suicide because of headaches. She commented what a shame it is that this poor dead person was unaware of the mushroom treatment that saved my life.

I told my mom that people relate my kind of headaches with child birth in which case I have given birth several times a day with no anesthesia for years and years. I should have thousands of kids!

You just can't do that forever I told her. She related with that analogy.

When she called she first asked what I was doing. I responded I was on the Internet reading a story from a new guy from the Netherlands about his headaches.

She said isn't that what the national geographic story is about...? Letting people know about how mushrooms cure headaches.

I didn't go into the cure/ treat stuff. She gets it.

If I ever questioned why I spend my time trying to help headache sufferers ( and I haven't ) it is because I nearly killed myself and this poor bastardin my home town did just did.

He didn't get the fecking memo.

I hope to hell I didn't know him but Big Spring is a small town.

Dan

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And then there's the even simpler, more basic tragedy that this poor guy probably never even learned about oxygen, or maybe he got a prescription for some low-flow regulator with a cannula and decided that oxygen didn't work for him.

Or that, as you so often say, BOL is out there but beyond the reach of people like him.

Or maybe he never even got properly diagnosed in the first place.

"He" being the stand-in for the scores of thousands of people that we know are suffering needlessly beyond human tolerance.

I was wondering yesterday what it would take to get every church denomination in America to provide every church with an insert for a church bulletin about "suicide headaches" and their treatment.  Forgive me if this is sacrilegious, but I was thinking yesterday about how much is made of Jesus's terrible suffering and how it was nothing compared to what people with CH go through.  Maybe you wouldn't put that part in the bulletin, or the part about psychedelics . . . but sources for information.  I will follow up on this with my denomination and let you know what happens.

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This made me so sad.

The thing is, I don't think DOCTORS even understand how suicidal these headaches make us.

If the medical community understood that, I think they'd be a FECK of a lot more careful with the treatment we get, and on top of that, they'd know to watch us, get us HELP.

Plenty of doctors do not seem to understand that this is just as deadly as let's say a heart attack, or cancer. It's not just a headache.

This is just where I'm coming from, from how I've been treated about it. Too many doctors do not get that this is a serious condition, and how they manage it matters.

They need to make information packages for people with our condition so we'll know our options. I don't know how that could get done, but it needs a link to clusterheadaches.com

Mystina

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F'ing sad, man. And yet it makes me think. . ."there but for the grace of [insert your preference here] go I".

For every one of us who has found a way to make this thing more bearable, how many out there haven't? Misdiagnosed, called "crazy" in all its various forms, simply without internet access to educate themselves. . .wow.

How do we let more people know? The medical community isn't going to do it.

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I don't know how well this would work but...

What about contacting someone like the CDC and seeing if they would be willing to do a Public Service Announcement about it? Commercials and whatnot.

We could start a petition for them to do one on it even.

I'm not at my best thinking today due to my pressure being up, but there's got to be some place that would care about this. A Suicide Prevention group?

I'll keep brainstorming. There's gotta be something we can do.

Mystina

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There's gotta be something we can do.

I don't know how or if it is still possible, but Oprah would definitely get the word out (thanks AO for the idea).

She's got her own network now, so it might be worthwhile to do a letter writing.... thing (can't remember the word) where we all send things in.

ETA: There's a thing on Facebook called Chase Community Giving. They give away money to charities / research foundations. Might want to look into it. Dunno if CB needs extra money, but it might be another way to get the word out there.

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I don't know how or if it is still possible, but Oprah would definitely get the word out (thanks AO for the idea)

it was actually my mother's idea, she just rambled off names Dr Phil, Oprah, and all their understudies . . . only two i can remember i cant watch that stuff on tv  :-/

AO

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I don't know how or if it is still possible, but Oprah would definitely get the word out (thanks AO for the idea)

it was actually my mother's idea, she just rambled off names Dr Phil, Oprah, and all their understudies . . . only two i can remember i cant watch that stuff on tv  :-/

AO

I think Dr.Phil's response might just be to yell nasty things at us. I'm not really sure he's even a doctor.

The other one that worked with Oprah was Dr.Oz. He would be a hell of a lot more reachable than Dr.Phil.

That, and he seems compassionate, and interested in alternative therapies for things.

Mystina

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I like your insert/bulletin idea, Jerry. The racks in Doctor's offices with info about many different disorders are mostly filled with cheap, folded, single-color flyers. Why couldn't we do the same thing? A handful of inexpensive flyers titled "Suicide Headache" sent to every Dr.'s office, church and school in the country might be extremely helpful. I wonder how much it would cost. Maybe we could get the Surgeon Generals office to print and mail them for free!

Ron

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This is another sad story that possibly could have been avoided. This sint necessarily a story about clusters as I have personally known people with migraines that have ended their own lives.

As to trying to "get the word out" it is something we have considered and thought about for quite a while. We would need to partner with a larger organization such as NIH or the National headache Foundation. It would certainly be expensive but you have to start somewhere.

I will be meeting with OUCH US in July and had planned on bringing up this topic for discussion.

Bob

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Pseudonym: In that case, we correct his bad information, and fix him up with the right kind.

I like your insert/bulletin idea, Jerry. The racks in Doctor's offices with info about many different disorders are mostly filled with cheap, folded, single-color flyers. Why couldn't we do the same thing? A handful of inexpensive flyers titled "Suicide Headache" sent to every Dr.'s office, church and school in the country might be extremely helpful. I wonder how much it would cost. Maybe we could get the Surgeon Generals office to print and mail them for free!

Ron

Ron, and Bob

I think Ouch + Surgeon General + NHF combined might be the best idea on who to go to.

Is there anyone above the doctors who's guidelines they have to follow? (I should know this, again, dumb right now.) If it's the Surgeon General... Then they'd be someone to contact, too.

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I have a lot of ideas about a lot of answers to a lot of the questions raised here.  I'll suggest three things (again, mostly).  The important caveat here is that I have no idea what OUCH or other organizations are actually doing, and I may well be assuming that it's considerably less than it actually is.  I apologize for jumping up on this soapbox from time to time.

1. I am really hoping that the NatGeo folks will stage a full-blast campaign for the show that includes CH, and that that might include getting Dan and Bob Wold and others onto the talk-show circuit talking not just about psychedelics to treat CH, but about CH in general (and also making a youtube video of CH-related clips, starting a social media campaign, etc.).   I must say it's a little hard for me to fully understand why Entheogen wouldn't want to partner in a campaign like that, but they might see it as beyond their fiscal role (or maybe they are participating).  The question would be, if there is such a campaign, how could we (and our families, friends, neighbors, churches, temples, civic associations, etc.) help? 

2. I would like to see a google ad that pops up every time someone is doing a search for "cluster headache" and/or maybe for some key cluster headache symptom(s), that leads people to a simple page about oxygen for CH and maybe links to ch.com.  Not selling anything; just a public-service ad.  I don't know what this would cost, or whether google might take it on as a charity, or whether money could be raised for it somewhere online (crowdrise.com, for example).  Maybe such an ad would be no more effective than where googling CH now leads you, which is to the wikipedia page about CH that certainly mentions oxygen . . . but it's an idea.  Maybe that page I'm thinking of would have the names of recommended physicians (OUCH has such a list, though of course it's only partial), and maybe those physicians would help in some small way to underwrite it. 

3. I had mentioned in an earlier thread about how my good friend who is an ovarian cancer survivor now is invited to med schools to speak to students about the importance of early detection of ovarian cancer.  Last week she was in Chicago as part of a team from the Ovarian Cancer National Alliance (OCNA), attending an oncology convention with 30,000 doctors and other medical professionals in attendance.  The OCNA had a booth, hosted a reception, gave out an award, and leafleted everybody who was there.  Doggone it, I thought, why isn't something like that happening for CH at big neurologists' or headache specialists' or even family-practice docs' conventions?  (For all I know--to say this again--maybe it is being done. Clearly, it costs money. But there are 20,000 new ovarian cancer diagnoses in the US every year--not a huge number; probably not many more than CH cases per year--and they come up with the money. Local OCNA chapters do fundraising, among other things.)

And here's a 4.  I was listening not long ago to a radio interview with a very successful war correspondent and war novelist, Philip Caputo, who told the story of having his leg amputated without anesthetic after an incident in some war zone.  Somehow I think it was in Iraq.  Caputo was saying how the horrifying pain of that experience taught him a lesson about being callous to other people's suffering.  Of course, I thought of Doctor Halpern's description of CH pain being equivalent to having a limb amputated without anesthetic.  So I googled Caputo, thinking maybe he could be induced to talk about/write about CH in some way -- and what's the first thing I come to but him and a college classmate/friend of mine being interviewed about their war novels! (My friend's Vietnam novel, Matterhorn, got a lot of praise last year.)  So there I was, with this great idea and this potential connection (don't know whether my friend of many years ago would be inclined to put me in touch with Caputo or not, but I figured he'd probably at least hear me out) . . . and no real idea what to do with it, because I figure you need orchestration and purpose to do something like this, and I'm not in the position to provide it.  So I put that aside, as I put aside many of my "big ideas" (though some I have passed on to people I think of as being in a position to act on them), and go back to doing what I can at this board.  But I'm willing to bet that if someone asked for them and if people felt they might go someplace, we could have 20 or 30 or 50 much better ideas than mine for someone to act on, and that many folks here would step up to the plate and help.

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We need money and we need a famous face for a modest campaign. I don't know how we'd find either. It seems that if we had just one of those things, it could be used to conjure up the other. So, how can we get our hands on one of them? Ideally, a Clusterhead with a last name like Walton or Gates would happen onto our site and out of gratitude for successfully busting his own CH, would dedicate his fortune to a cure. Unlikely? Yeah, prolly won't happen; but maybe on a smaller scale it could. I can't believe that there're no filthy rich Clusterheads or clusterhead celebrities around who wouldn't be willing to help us. But how to find such a person? Hello. Anybody out there?

The business world employs men called "head-hunters" who comb the corporate world for executives who can be lured away from current employers with offers of better wages or circumstances. Maybe some of the tools they use to find a particular type of person with a particular set of skills could be employed in our search for a rich, celebrity Clusterhead. I just checked and we have 1179 registered members. Out of those, somebody has to either be or know a head-hunter. I'm gonna advertise for one right now.

Ron

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Hipshot,

The OUCH meeting in July is on the 15th and 16th in Nashville TN.  Dr Goadsby and Bob Wold will be the keynote speakers.  Bob will be talking about the BOL situation.  Go to www.ouch-us.org for info.  We'd love to have you join us.

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I would imagine that coordinating with OUCH could be fruitful, since it turns out that OUCH is really a good organization - the American wing at least - and on their site they even list busting as the most effective preventative out there.

To give an idea of what OUCH has been doing, they also have a "family services" division that comes to the direct, concrete aid of CH'ers who are in crisis with limited or no funds/insurance, which is an incredible service, one that very well may have prevented some suicides.

I had been afraid that the American OUCH might shun the busting concept, as I heard the UK version of OUCH was doing at one point, but the fact that they're featuring Bob alongside Goadsby says a LOT, and I salute (and am a member of) OUCH! <insert vigorous saluting emoticon here>

I hope Dr. Goadsby - the supposed world's foremost authority on CH -  who I'd earlier seen quoted as believing relief from psilocybin was likely a 'placebo' effect, will learn something at the OUCH conference if he still hasn't done his research. Actually, if that quote was accurate, I'm pretty much taken aback that he could even believe a placebo effect is possible with CH.

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Thanks Bejeeber!  OUCH indeed is appreciative of the work done on the Clusterbuster side, and would encourage its continued work.  As a 501©3 organization OUCH cannot come out and directly endorse the use of illegal substances, but that does not mean we don't recognize the great work that has been done, and we are very excited about the work being done on BOL.

May I suggest OUCH could use some participation by busters?  We have a number of areas that are terribly undermanned.  (I'm understating!)  I know some here are also members of OUCH, and that is appreciated.  We have had some of the Board of Directors step down for varied reasons, primarily of health or family matters, and we could use some to step up and be willing to serve on the board.  This could be beneficial to both organizations.  We would not be looking for a great time commitment.  There are a few committees that are unmanned, with needed work being left undone.  If you don't feel you could serve on the BoD we would love to have some help in some other areas as well.

If you have any interest or would like to see where you could fit in I'd be happy to talk with you.

Jerry

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Here it is - from the ch.com archives:

Mark Honigsbaum  The Guardian, Tuesday August 2 2005 .

“Peter Goadsby, professor of neurology at the Institute of Neurology, University College London, and the world's leading expert on cluster headaches, is sceptical about the mushroom therapy.

He argues that the relief reported by some patients may be a placebo effect or owing to natural remission.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=print;num=1212882305

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Bob Wold will be the keynote speakers.Bob will be talking about the BOL situation.
Thank you, thank you, thank you Bob for all of your hard work and the countless hours you dedicate to helping all of us!

The article I found on Goadsby/placebo was a few years old, so hopefully he's since been convinced otherwise.

http://www.guardian.co.uk/uk/2005/aug/02/health.drugsandalcohol  Will he be attending the Clusterbuster conference? 

OUCH - what a fantastic service you offer with the Family Services Division! 

As a 501©3 organization OUCH cannot come out and directly endorse the use of illegal substances
  Maybe I'm confused on something here (trust me, it happens all the time), but isn't  Clusterbusters a 501 © (3) non-profit? 
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Kaboom,

Good point about Clusterbusters being a 501 © (3).  That had always been one of the reasons given for OUCH to stay clear of the busing side, but along with that is the ties that it has had in the past with "legitimate" medical folks.  Obviously the tax reason doesn't hold up.  I wasn't trying to be disingenuous in my answer.  That was just the reason I've heard for the last however many years and I didn't really think about it.  Many of us at OUCH are very much in support of what is being done here.

As to Dr. Goadsby, six years ago shrooms were very much on the "way out there" treatment considered by most medical people alongside Sinusbuster, tin foil hats, and other stuff like that.  There has been enough recognized research into the use of psychoactive remedies to bring it much more mainstream.  Last year at OUCH Dr. Goadsby's remarks were much more along the line of he could not recommend such a practice due to its legality.  I'm paraphrasing, not putting words in his mouth.  I know this year he is very interested in talking with Bob, in fact he may stay over a day if he can arrange his schedule so he'll be there for Bob's talk.

Jerry

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