Tony Only Posted December 16, 2013 Share Posted December 16, 2013 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 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 16, 2013 Share Posted December 16, 2013 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. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 16, 2013 Share Posted December 16, 2013 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... Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 16, 2013 Share Posted December 16, 2013 Never done this before, but I'm editing the wikipedia article now. Making reference to Dr Sewell's etc. studdies. Dunno if the "save" button will actually work.... We'll see. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted December 16, 2013 Author Share Posted December 16, 2013 Thank You so much. You can find the older (better) versions via the link in the first post. Save your work when done Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 16, 2013 Share Posted December 16, 2013 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. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted December 16, 2013 Author Share Posted December 16, 2013 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 ! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted December 16, 2013 Share Posted December 16, 2013 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 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted December 16, 2013 Share Posted December 16, 2013 Double kudos to our Tony/Jeff dynamic duo for the wiki inspection and fixin'! [smiley=thumbup.gif] Quote Link to comment Share on other sites More sharing options...
blueballs Posted December 17, 2013 Share Posted December 17, 2013 Triple kudos..hats off. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 17, 2013 Share Posted December 17, 2013 Four 'cudas! THANKS!!! Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 17, 2013 Share Posted December 17, 2013 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 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 17, 2013 Share Posted December 17, 2013 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 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 17, 2013 Share Posted December 17, 2013 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! Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 17, 2013 Share Posted December 17, 2013 Thanks to your inspiration, Jeff, I made a small edit (adding a link to Dan's part of the Nat Geo special), and I'll also try to stay on top of this. Thanks, Tony, for pointing this out. Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted December 17, 2013 Share Posted December 17, 2013 i tried adding my link for spport to only have it deleted within a couple hours. I tried for a couple days and it was deleted everytime. I gave up Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted December 17, 2013 Share Posted December 17, 2013 CHS, I think that's were we can coordinate our efforts to keep this information available. Amongst our group I am certain our resolve to help, can be greater than those that would supress.. J Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted December 17, 2013 Share Posted December 17, 2013 i agree. 2 thumbs up Quote Link to comment Share on other sites More sharing options...
bundy47 Posted December 18, 2013 Share Posted December 18, 2013 is there any medical trial for this in the united states? Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 21, 2013 Share Posted December 21, 2013 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 Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 21, 2013 Share Posted December 21, 2013 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/ Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 21, 2013 Share Posted December 21, 2013 I've added the 1745 reference. Quote Link to comment Share on other sites More sharing options...
1961mom Posted December 21, 2013 Share Posted December 21, 2013 Wow, you're speedy! Thanks CHFather. Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 21, 2013 Share Posted December 21, 2013 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?????? Quote Link to comment Share on other sites More sharing options...
ClusterHeadSurvivor Posted December 22, 2013 Share Posted December 22, 2013 as I stated I tried adding my blog as a place of reference from a person with the disease. I tried adding at the bottom under links...was deleted within hours. I am still baffled why anyone would deleted a survivors point of view or blog to help other people??? Quote Link to comment Share on other sites More sharing options...
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