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Tony Only

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Do we have people on board experienced in updating the Wikipedia ? Any references to Clusterbusters, psychedelics and/or other alternatives keep being deleted at cluster headache Wikipedia page. People with personal agendas keep replacing facts with personal opinions.

I really think this is important that we have all not just selected information available there. Here in Finland that is the first page the media looks into. And even some doctors use it as a resource.

I think it would be a huge "win" if someone could take this as their task, correct the page to a decent status and maybe save it for later use so it can be corrected again in the future.

I think the old (decent) versions can be found here:

http://web.archive.org/web/*/http://en.wikipedia.org/wiki/Cluster_headache

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Any references to Clusterbusters, psychedelics and/or other alternatives keep being deleted at cluster headache Wikipedia page. People with personal agendas keep replacing facts with personal opinions.

Man that is sickening.  :o:(

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VERY sad that the best treatment I've ever had for my CH is relegated to this one tiny sentence at the bottom of this otherwise thourough article:

"Some isolated case reports have also suggested that ingesting LSD, psilocybin or cannabis can reduce cluster headache pain and interrupt cluster headache cycles"

Very sad the missuse and restrictive control of information by small minded people....

I do recall a few years ago the information in wikipedia was much better covered regarding LSD, psilocybin, and LSA...

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Never done that before!!!  I sense I might do it again someday.  :) 

Studies performed by dr's R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr, have concluded that Psilocybin, LSD and LSA have a significantly higher efficacy rate than any other prescription medicine available. Their study published in Neurology 2006;66, showed that LSD had an 88% and Psilocybin a 52% effectiveness at stopping an active Cluster Headache cycle as opposed to the generally accepted mainstream treatment of Verapamil was only 5% [100]

I added the 53 person CH study as reference (#100) at the bottom of the article, from Dr's Sewell, Halpern and Pope...  ;)  VERY odd that their article either hasn't been referenced before or has been removed (as I'm pretty sure I saw it in the reference some years ago... 

oh, and it looks like my changes showed up right away...  That's sorta scarry that anyone can make changes to those docs on wikipedia.

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Wikipedia is not trustworthy in that sense that anyone can edit it but I am under the impression that especially in countries where literature about CHs is limited, it just is one of the first hits from Google. I think it is important to keep the truth alive there. So Thank You !

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Thanks to both of you -- Tony for catching this, and thank you Jeff for the edit.  Much appreciated!!

Tony's right, Wikipedia is one of the first hits on Google, and virtually anyone can edit it.  So please everyone, keep an eye on this and edit as needed.

Thanks again,

Bobb

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ok, so let me start with the fact that I'm a bit of a research aficionado at times....

It seems there is a single user on wikipedia that's the source of 100% of the removal of and editing out of anything related to LSD, LSA and Psilocybin...

51505150VH  is this persons id on wikipedia.  I also found there is a VERY handy "undo" button for any and all to use.. :)  I read one of his/her justifications that any reference to illegal substances shouldn't be included in medical information.  Interesting....  I guess this person should rewrite history that cocaine was never used as a numbing agent, nor mushrooms used for... ummm alleviating headache in past times either....  The information this person removed from the CH wikipedia borders on the edge of seriously disgusting.  He/She single handedly removed "Suicide Headache" from the article when that's one of the most common references to CH, and has been since (most likely) that person was even born...

He/She seems very knowledgeable, but also on a clear agenda to smite anything related to actually providing PUBLIC information on the subject of CH through Wikipedia.

I propose that anything this person adds/removes "WE" as a community subsequently use the "UNDO" button until he/she realizes they are outnumbered...

I am in the process of using the UNDO on several of his/her edits now....

J

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After reading multiple edits from the wikipedia user: 51505150VH.  I've come to the conclusing that person is most likely a doctor, trying to make wikipedia a medical reference as opposed to a knowledge store.

Those that follow me understand there's a HUGE difference between the two, and I for one don't think the CH wikipedia page should be limited by the narrow minded thinking of the dufuses and doctors ((and doctor dufuses, many of us have visited for treatment...  (ok I rarely resort to name calling so I'll go back and strike that from my post, well.. not just yet... It makes me feel just a small amount better calling someone a name in this regard...  Primarily due to all the pain and suffering my DOCTORS put on me over the many years before finding this site...  ok... back on track...

I don't know how wikipedia will manage the followup "edits", but I plan on doing my best to track any changes and revert them as quickly as possible going forward (from this user)...

J

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OK, I dug through that archive site and found the original few paragraphs on LSD and  psilocybin.  I edited the information and reposted to the wikipedia site.  I plan on keeping tabs on this routinely going forward (as long as my poor memory does't allow me to forget)....

updated information in wikipedia:

Psilocybin and LSD - Psilocybin is the psychoactive substance found naturally in hallucinogenic mushrooms. A self-reported interview of 53 cluster headache sufferers taking LSD or Psilocybin was conducted by doctors R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr. According to responses, consuming a sub-hallucinogenic dose during and prior to the onset of a cluster episode can abort or prevent the progression. One notable finding is that some patients reported that treatment with Psilocybin or LSD extends remission periods. According to the interview report, "Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks ... 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension."

In most countries like the United States, it is illegal to possess or consume these substances. Hallucinogenic mushrooms and LSD are currently scheduled and controlled substances, and thus medical research has been difficult. In April 2013, a major study by the British government on Psilocybin's benefit in treating depression was postponed because of regulatory and legal concerns. In the absence of ongoing safety studies and adverse event monitoring, the safety profile for these substances is largely anecdotal. However there is growing supporting evidence from the small Cluster Headache community that treatment with these substances is safe and allows them to return to a normal and functional life. For a small population of sufferers, the legal and safety risks are outweighed by the pain caused by the condition. National Geographic ran a segment regarding this treatment in their "Drugs Inc 2: Hallucinogens". Season 2. One of many volunteers that were interviewed for the segment was "Dan". Chronicled was his preparation and consumption of psilocybin as well as his pain free period immediately after his maintenance dose. Some sufferers claim that this treatment prevented their suicide. Even the US government's Partnership for a Drug-Free America has noted that, "No other medication, to our knowledge, has been reported to terminate a cluster period."

J!

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Thanks for bringing this to everyone's attention Tony!  I'm continually baffled by the idea of those who believe "to squelch information" is a good thing.

This may be a game of cat & mouse for who knows how long!

Kudos to the good ship and crew of Clusterbusters who've agreed to keep an eye out for the person doing the squelching (and edits)!  Jeff, I can't help but insert a double dose of your sentiments!!!  Jackass is jackass after all :)

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Ps...one edit I'd like to see go into the Wiki site is the first documented historical description which adheres to today's diagnostic criteria.  If anyone's interested in editing that section?  1745 is a helluva lot earlier than 1923.  In the interest of featuring just how long this condition has been known and how little has been accomplished in the area of new treatments.  Also there's a guy dating back to 1600's...I'll have to go looking through my bookmarks to find that reference.  Cindy :)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117620/

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I'd like to find a way to explicitly mention ClusterBusters somewhere on this Wikipedia page, but I'm not sure how to do that.  I thought of maybe adding CB and CH.com to the "See also" part at the end, or adding a new heading, like Information and Support, that would list CH, CH, OUCH . . .  but then I got stuck about how to reference Facebook pages.  Any ideas??????

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