ThatHurtsMyHead

I guess I'm lucky then. When I first started learning about fungus dosing, I read all the reports about nausia, bad taste etc. I started out using caps and haven't even experienced what they taste like (gladly ). I still enjoy fried portebello and oyster mushies on my salad. J

yea, they seem to pick and choose which rules to follow in wikipedia. I found a plethora of medical articles that all only list primary studies. Honestly I can't even find a secondary study on Verapamil for CH, only primary studies. (by their rules shouldn't be allowed either) J

I have to commend yet again CHFather's writing skills. Honestly he's doing so much more than I could ever do over at wikipedia. The debates have been healthy, polite and to the point, but it seems the admins just don't care about anything but following the rules. Regardless of the ethical results (pushing cutting on someones brain over taking pill) Of the avenues I'm pondering is why haven't there been any secondary studies on Psylo it seems just ONE good secondary study would be enough to get placement of Psylo. Is it Money? The Dr risking credentials? Other? I believe there's several doctors that have joined the board (and support if not in script form, but in ethical form) the use of Psylo. What's necessary to have a secondary Dr review / paper published? Is a secondary study just having a different doctor review the primary study and publish either agreement or dissagreement with the primary paper's findings? J

Once upon a time I remember a big stink that Google was selling search result placement. Unsure if that's not around anymore as I can't find it. I have found add placement purchasing (I think it's those adds that show up at the top of the search results list based on the searched keyword). J

All, From the discussion in the wikipedia talk page, I might as well be talking to a brick wall. Thanks CHFather for applying your written tallents! It's clear that the medical writers really have NO regard for helping anyone only following the "Rules". The entire population of the planet could die and they'd still quote the "rules" as a lame excuse for holding the status quo. I definitely understand the reason for the rules on Wikipedia, but as everyone here knows rules don't exactly apply when you're next option is someone cutting on your brain..... Geesh.... I'm curiously investigating a separate avenue and so far can't get a good understanding on how Google works with "paying" for placement in search results. Anyone familiar with how that works? I've read their page regarding the "bidding" process. How does one Buy placement in Google search results? I certainly don't think wikipedia is paying for their placement, so logic might follow that it wouldn't cost much to be #1 in the search results for "Cluster Headache" J

Thanks Alleyoop, I was just about to track down the trip scale and post it. For a comparison of my doses to the scale: 1.2g - Trip Level 1 1.7g - Trip Level 2 (this is the norm so I know I'm "getting the medicine") 2g - Just scratching the surface of Trip Level 3 (only a few times and just barely) I've never really gone further than that, J

I concur Caps is the way to go J

Purple, No worries my friend, nothing taken negatively. I appreciate to an order of magnitude CHFather's engagement! He's so much better at written persuation than I. That's exactly what the Wikipedia article needs! J

CHFather, Yes please. You're definitely a much better editor than I. I've been reading the rules in wikipedia and I understand (but don't agree with) the catch 22 the article is in. Primarily, It's been categorized as a medical article so the rules on Wikipedia say it has to fit secondary medical review which there is little to none for LSD, Psylo, LSA etc. Even though by the primary reviews they work significantly better than the horrible stuff the doctors are killing people with every day. It's sad but don't see any way to get REAL help for people into the article w/o secondary medical reviews. I like your approach CHFather, and will assist where I can. J

Purple, You might not have seen my last post, but Scott at Wikipedia unlocked my account as he did some duedilligence and found and read this thread. He provided some positive feedback on how we can better work on wikipedia to keep articles updated. I'm going to do my best to learn more about proper editing of wikipedia (already learning more from CHFather as I had never noticed the forum tab on the article to discuss proposed changes etc.). J

All, The admin that originally blocked me has unblocked me and I have to say a huge thanks to him that he did some research and found the board here. It was encouraging to read that he read this thread and provided some positive feedback (below). Thanks CHFather for providing clear and accurate information on the talk page. (which I'm now learning about It may be long but I'd like to post his note here regarding some recommendation on how we can work with the adminstrators at wikipedia to get the best and most accurate information into (and hopefully stay ) in wikipedia. ********************** Unblocked[edit]I see now what's going on - Jeff, you're a member of the ClusterBusters forum. I've read through your thread discussing the cluster headache article. Basically, appearing out of nowhere to start reverting someone's edits with a brand-new account is a big red flag. Usually it's a sign of somebody with a second account; more rarely, it's someone recruiting other people to make changes to support their position on something. Around here that's referred to as "meatpuppetry" (which I personally think is a dumb name, but we're stuck with it). It's basically treated as one editor with multiple accounts would be. Having seen your comments at ClusterBusters, you've got the wrong impression; there are no personal agendas at play here. We just have very strict rules about where medical information on Wikipedia can be sourced from, and how much of each should be used (not giving undue weight to particular opinions). Likewise, our rules require unsourced information to be removed. You can read about these at WP:MEDRS. By the way, I'm sorry about Daniel Case's comments above. I don't know him, but he seems to have been in a bad mood and should have been polite when handling your unblock request; that tone was uncalled-for. Unblock requests here are not handled by "reaching out to a friend"; they go into a queue for any admin to take a look at. As you've seen, some of our highly experienced medical editors are now in the process of giving cluster headache a working-over. It may not have been obvious, but it was actually in very poor shape, largely caused by well-meaning visitors dumping all sorts of stuff into it over a period of years. I'm going to unblock your account, because I don't think you mean badly at all. However, please reciprocate on my assuming good faith by not immediately starting "a cause" and participating in edit warring. Please pass this message on to your friends on the forum - there's no reason why you at the ClusterBusters community can't work with us here (and indeed be part of the Wikipedia community as editors). But what you and your friends absolutely must do is spend a while getting to grips with the strictness of our referencing requirements, and participating in discussion on the article's talk page. I see that your member CHfather already has. You're all welcome to, but swarming in en masse to try and argue a point by sheer force of numbers will get you absolutely nowhere and may even damage your future ability to edit. If there are things you don't understand about how we work here, just ask and someone will be able to explain. Sincerely, — Scott • talk 01:26, 3 January 2014 (UTC) If you read this. Thanks Scott!! J

I just got a third email from an admin bashing me for creating multiple accounts, (which I did not). I only have the one account and it's the same as my name here. My IP has now been banned. Geesh.... And all I did was make one change that apparently pissed an admin off because it was his change. He rallies his buddies to corn hole my account....... I'm pretty pissed, but need to get over it. My ability to edit wikipedia is now nill... J

She now removed the medical reference to the Dr Sewel and Dr Halpern study.... GEESH...... J

Thanks CHFather! I'm confident your good penmanship and positive persuation will provide success. The Neurology report by the 3 doctors is a stellar reference I think! I see that person SandyGeorgia is going through the article with a bloody sword right now, deleting paragraph after paragraph with bogus reasons. (clearly she doesn't understand CH! at all, and I can only guess she's associated with the admins Scott or Daniel) The two admins that ganged on me appear to have a dilema that my last request might create some sort of admin discussion item and get the first guy in trouble. I guess the Admins have some forum and internal regulatory review that happens. AN/I ? Whatever that is. Sad, J

Well, they just removed the LSD section... WTF... Another user that looks like a friend of that admin that deleted me just removed the entire section on LSD and Psylocybin. I'm exhausted, and need some help on there. If enough of us put it back, I see there's an arbitration process. I see two references that say these are unsubstantianted and unverified information. But the studies referenced are in Neurology etc... If it goes to arbitration, I'm SURE we would succeed, but others HAVE to keep putting it back (with an explanation as to why). J

Interesting how things go. Try to do some good and the jerks come out of the woodwork. That administrator apparently reached out to a friend of his that did a second block on my account and sent me a pretty dumb email about being a dirty sock that couldn't be washed. wtf?? My faith in wikipedia information and adminstrators is to the point of WOW... really? My IP has been blocked and the appeal process has been halted. All for adding back "Suicide Headache" back to the title of the article (which is ALL over the online medical references)... I'm really in wow at how they apparently let the inmates run the assylum at wikipedia... J

Looks like I need some help on Wikipedia. Someone removed the reference in the first paragraph "Suicide Headache". and I reverted it. That person is a wikipedia administrator and apparently doesn't know anything about CH, but decided to indefinitely suspend my account and again delete the reference.... VERY frustrating. After I reverted his delete, I was in the process of trying to figure out how to send him a note so i could explain, when my account was suspended "indefinitely".. He made up a reason that I was using multiple accounts, which is obviously BS. He just got mad I reverted his change.... I'm trying to figure out how to request a review of my account suspension to another admistrator, but maybe someone else can get on and send this jerk a note....... And explain. I for one support the reference of the term, not out of like, but it helps explain the pain in terms those without CH can start to understand.... Not to mention Suicide Headache is referenced all over the internet AND in medical journals...... J

Moxie, Sorry you're getting hit, but glad you're getting some quality time with your daughter. CHS, (Hijack alert). sorry Moxie. :-* I have a similar story to yours. I think it might be more common than many realize. 1st wife pretended to understand. I'm sure she understood what she could, but just wasn't capable of grasping the reality of CH and sometimes went out of her way to make me "pay" for this thing I have. Dated for a while and had the same experience as yours. I went back and forth from delaying telling or just telling right out of the gate. I had a few mild successes, but mostly crash and burn failures at someone understanding (glad to know early!) Nothing as good till the woman I'm seeing now. Of all things she's a nurse and while she hasn't seen a cycle (I pray never does). She's sat with me for one fungus dose, and we both went through it with flying colors... Literally.. ha ha ha.... GLAD your other half is so supporting of you and you of her!! Jeff

Geoffmh, GLAD to hear your life has been so much better the last 10 years!!! I've only been on this quest for 3 years and am Sooooo thankfull of those that discovered this treatment. My life is several orders of magnitude better than it was before. I never even realized the bad place my body and mind was in before starting the fungus dosing. Stick around, there are a LOT of awesome people hanging around! J

Wikipedia Update, I've been keeping an eye (and hope to continue doing so) on the CH Wikipedia page. Since adding the LSD and Psilocybin back to the page there have been several positive edits (nothing removed!). The person that previously removed that entire section recently added a few paragraphs regarding not approved medically etc etc. I think was a good add and not negative at all. I'll continue to check it from time to time. J

Jimmys, I understand your dilema. I was fired from a very good paying technology job in 99' when in the middle of a bad cycle (no doubt made worse by the job stress). I was irritable and couldn't focus. I was walked to the door after a very brief meeting with HR at the entrance that day. Was one of the $hittiest days of my life. Sorry to hear you have the potential makings of the same. I'd definitely find another doctor. Explain the mental destruction you're going through and need some temporary "Family Leave" until the cycle is over. J

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

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!

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

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