Psiloscribe

Clusterbusters? Bob

As FunGuy stated, David is Lee's son. Lee Kudrow did more early cluster research than just about anyone, including the discovery of 02 as a treatment. That was almost as long ago as LSD being outlawed so you can see how long it takes to get cluster treatments recognized. David is one of the best and most experienced cluster docs in the US. Shabooty, I know you're desperate and hurried but its best to take your time to get it right. I know the desperation this pain can bring about but..... You found a great doc so I would try to stay connected and work with him. Even if his med regimen doesn't work in the end, you'll need to properly and safely make the transitions. Not that you said you would but,,,,Don't be dosing with mushrooms along with the Frova. Not only will they not work but you don't want o be building up too much serotonin in your system Prednisone is the biggest blocking agent out there for the CB treatments. Not only do you need at least a 5 day break but the longer you are on it and the bigger the doses, the longer you'll need to detox from it. All that said, I think the most important thing is exactly what people have been saying (and you understand) and that is....get the right 02 setup going....and continue reading. best of luck, Bob

This is exactly what brought them to us. Honestly folks, the best story is the truth. The most compelling story is the truth of what we suffer from, who we are, and what we go through. NatGeo interviewed many people looking to put the right "face" on the story. They want to make sure that its CLEAR to viewers, who we are and why we do this. I agree that as with any TV news/documentary show, they will want to tell the most sensational storyline. They know from their first story on this, that the truth gives them that. They want to make sure that no one gets the wrong idea. Bob

In my best Joe Pesci voice What do ya mean, funny? Let me understand this cause, I don't know maybe it's me, I'm a little f**ked up maybe, but I'm funny how? I mean, funny like I'm a clown, I amuse you? I make you laugh... I'm here to f**kin' amuse you? What do you mean funny, funny how? How am I funny?

I would have posted this in the fundraising threads but it has a time limint so I thought I'd put it here.... If you haven't checked out IGive, it's not a bad deal. A way for Clusterbusters to raise some funds while you save money shopping online. Doesn't cost a thing and can save you some bucks. In this case, you dont need to do anything but sign up and CB makes some $$ Please pass it along to the other online shoppers you may know. Here's your personalized invitation to help Clusterbusters, Inc. earn oodles of money, free, quick, and easy! It's our 5+5=$10 (Or more!) Special Bonus. For each new person who joins iGive using the special link below, installs iGive (our newly updated handy dandy toolbar) and keeps it installed through April 8, 2011, we'll give Clusterbusters, Inc. $5. For free, no purchase necessary. If they shop just once (and we're hoping they'll shop) via iGive by April 8, Clusterbusters, Inc. receives another $5. (Or more!) That's at least $10. What's all this 'Or more!'? -- every time a member shops via iGive, up to 26% of each purchase helps Clusterbusters, Inc.. More members + more shopping = more donations! Our goal -- to see how fast this Special Bonus can attract 1,000 new iGive members to help Clusterbusters, Inc. and others and to learn if this kind of bonus helps new members shop more. We've only sent this special invite to about 25,000 iGive members. Once we've reached 1,000 new people joining using this invitation no more invitations wlll be honored. So please act quickly to help Clusterbusters, Inc.. This is the link: http://www.iGive.com/welcome/warmwelcome.cfm?m=588661 Why install iGive? Because it makes helping Clusterbusters, Inc. so very easy. iGive Shoppers, on average, raise $50 a year for their cause. Installing iGive is quick. It can be uninstalled in moments. It knows about the 800+ stores that help when you shop there, it signals you when you need to activate for special donations, and it's a simple way to use Bing and iGive to raise a penny or more with every search. Pass along this e-mail to friends, colleagues, and fellow supporters. The details: - Invitation open between 2/22/11 and 11:59 a.m., March 15, 2011 (Chicago time). - New members only (never have been an iGive member previously). All the normal rules of membership and purchasing apply, our site has the details. The second most important rule? One membership per person. - Once 1,000 new members have installed and are using iGive, the offer ends. - Installing iGive is vital. The new member must install the iGive toolbar successfully within 3 days of joining, or the $5 installation bonus will be reversed. - The special link is important. No link, no $5. That's it. Don't have the new iGive toolbar? Try it yourself. It's at http://isearch.iGive.com/toolbar.cfm . You may need to login first. Yours, Robert N. Grosshandler Founder P.S. We've added a little something new. If you want to track how you are doing, just visit http://www.iGive.com/html/referralsreport.cfm. If you want to track how your cause is doing, please visit http://www.iGive.com//html/causestats.cfm .

I just wanted to thank everyone for the great response from people willing to speak with Natgeo. Thanks again, bob

I'm sure you would be just as charming as this young lady http://reason.com/blog/2011/01/05/i-wish-i-could-talk-in-technic Bob Disclaimer: The scene depicts a rather large recreational dose. Not a normal sized dose to treat clusters.

Just so everyone understands, this is an international project. Actually, they like the fact that this is a worldwide story, so.....if you consider people in the USA as foreigners, you are invited to participate Bob

I just wanted to thank the person using this alot for us. Thank you Bob Also a shout out to all you IGive'ers out there ;-)

Thanks to those that have already come forward to participate. I spke witht he producer today and they are very much interested in taking an in depth look at how clusters affect people lives. Please consider getting on the list. They will come to you!! If you'd be willing to be interviewed but aren't sure you have to offer what they are looking for, let them decide. We aren't filming an episode of Glee so you don't have to sing, nor an episode of Dancing With The Stars, so no dancing experience needed. Just be yourself. Bob

There are many reasons that the show centers on LSD. Although history suggests that mushrooms have been used for thousands of years to treat headaches, LSD was discovered while researchers looked for headache treatments. LSD is also currently being looked at as a treatment for other ailments. The fact that it IS harder to find but most likely more effective for clusters is another interesting point to be made. Once this one airs, if the natGeo mailboxes overflow with mushroom stories we may be able to spark some interest in a new documentary. Bob

The National Geographic special that included Cluster headaches and BOL was one of the top 5 NatGeo programs ever watched. Based upon [our] the show's popularity, they have decided to do another special on the medicinal benefits of LSD and BOL. They have contracted the production company that won an Oscar for documentaries, to produce this new documentary. I have been in contact with the producers and Clusterbusters will be working with them on this project. They are now looking for people with clusters to participate and are looking for the following volunteers to be interviewed and filmed. Someone that is willing to be filmed during an attack. Someone that is willing to be shown using LSD to treat an active cluster cycle. Someone willing to discuss how clusters have affected their lives. Someone that is willing to discuss their use of LSD to treat their clusters and how it has affected their lives. They may be willing to interview people that have used other related psychedelics for their clusters. This project is currently underway and filming will take place over the next 4-6 weeks. Of course, they understand how people may require complete anonymity and will take all necessary steps to keep you anonymous. You too can be a blurred face and have a voice like a sleep deprived Boris Karloff. If anyone is interested in being interviewed, please send me a PM or email and I will give you more details or answer any questions I can. Thanks everyone, Bob (See you on the Red Carpet)

There are a LOT of people that aren't comfortable posting on message boards at all and come here and to other sites in a desperate search for answers. Using it more like a tip to the library. Seeing a message board as a source of information. Other's like many here, see a good message board as a living, breathing, caring life form. People that have been using message boards for a long time know there are many types and each forms it's own character and personality. If people just stop in for information and don't stay a long enough time to understand what makes the site tick, don't feel it's heartbeat, they move on with their lives. Some people are wronged in life and decide to become lawyers to fight for justice. Others are wronged and decide to spend their lives getting revenge. Everyone finds their own way to deal with life changing events. Most of the time it doesn't bother me when people come and get help and leave, never to be heard from again. I'm happy to know that we were able to help someone go back to their lives a little bit better off than they were before they stopped here. That's the goal really. To help people get back to their lives without as much pain or suffering as they had before finding us. People don't come here initially looking for a community to join or to become an active member of a new "family." They come looking for information and for help. Some stay for an extended period. Others get help and go back to being the good spouses or parents, or kids, they want to be. If people come looking for "data" they can find it. If people come looking for someone, anyone, to listen, understand and actually care about them, they can find it. That's good enough for me. Bob

Go Packers. And I'm a BIG Bear fan. That should tell you that are football literate how much I hate the Steelers. Well, not all the Steelers, just that QB of theirs.

Hi Dan and evryone, First off, Dan, I'm sorry to hear that you're hurting. I'll send a PM on that. Secondly, I don't think anyone feels your frustration more than I do. (I know others are equally frustrated but not more so) Clusterbusters has known there are several things out there that can help people and change their lives for the better, for years. We've been here 7 years knowing there are these things and we can't get them to people and can't move the "system" fast enough. A few things that might explain a bit about our situation. None of them being "good" excuses for the time delays and monetary situation but just facts as I know them. We were quoted a couple years ago that it would cost a pharmaceutical company between 100 and 200 million dollars to bring psilocybin to the market if all approvals were met. None of them have come forward to commit those types of funds to bring it to the market. Most I think has to do with the high cost vs our low numbers plus the fact that it would only have to be used a few times a year. I can't imagine what they would want to charge for a dose but as an example, I was once prescribed a pill to ease stomach upset from all the meds I was on for clusters. It is one used for people on chemo therapy. It would have cost my insurance company $2500.00 per month. 30 pills. I declined. Almost $100.00 a pill for extra strength Tums. There is no storeroom full of BOL that I know of. None in Massachusetts at all that I know of. Yes, believe me, getting 10,000 doses made up that could be passed out for free was looked into several times. Labs and chemists have turned us down. If I could make it I would. Clusterbusters paid $10,000.00 for the BOL that was used in the German study. There was only enough for the 6 people in the study. I am told that someone living in China, flew to Germany, got a doc to write a script for BOL and a compounding pharmacy filled his prescription. He then flew home and broke his cycle just as the others had. I do not believe that could be done here in the states. I don't know if it can be duplicated in Germany. Since getting involved in all this, we at Clusterbusters have become angered, frustrated and amazed at the costs and time delays in trying to get people help. Its been an incredible learning experience in how this damned system works. Between dueling researchers, institutions more worried about their reputation, fearing my middle name was Leary, lab costs, review boards and government agencies, its obvious that nothing moves quickly unless its financially beneficial to do so. Maybe we need to start throwing red paint on lab coats like PETA does on animal fur. Where are the people for the ethical treatment of cluster sufferers? Bob always open to suggestions

It has been a great year for Clusterbusters and this message board as an outlet. When I began Clusterbusters back in Aug of 2002, we began as an invite only group on Yahoo. A place where people could feel free to post about things they may not have wanted on an open forum. We've definitely come to the point where I think most people can now feel comfortable speaking of these things in public. That alone eases the burden on people looking for help. This was my first welcoming post on Yahoo.... Hello fellow clusterheads and keepers of the flame! Welcome and thank you for joining us here. This message board, email service has been started to join together people interested in advancing the psilocybin and related therapies, for cluster headaches. As an aside, the early research included migraine and other forms of headache treatment. To this end, we will be including a wide ranging discussion in "headache" treatment and will therefore include people that suffer from other types of headache pain. This is not an exclusive group for cluster sufferers, although they will certainly make up the largest majority of members. Just as supporters of cluster sufferers are just as important to keeping *us* alive, so to will they be important here and hold a special place among us. Our purpose here is to take a pro-active role in researching the treatment, spreading the word, and beginning the long road to acceptance of the treatment as a "legal" way for people to treat their headaches. I see this group as an extension to all the work that has gone on before us and should be viewed more as a tribute to all those that have spent thousands of hours and untold dollars keeping this treatment alive. Flash, PinkSharkMark, DJ, and all the rest, this ones for you. I envision many things for this group...pushing for research by legitimate research organizations, contacting governmental institutions and lawmakers, getting the word out to as many sufferers as possible,,the list goes on. You're here to help add to the list of useful actions we can take. I hope that you're participation here in no way affects or diminishes your participation in other groups or message boards. This group should ADD to the ongoing forums. I feel the need to "rock the boat" more than just a little bit. I don't want to join the establishment, I want to shake it up a bit. This may sound inviting to you (or it may not), but hitting the send button on that letter to your senator about mushrooms is a little more difficult to do that sending a letter to another sufferer. Please use this forum to make suggestions, offer advice and spread the good word. If you have names of people you feel would be interested, send me their email address. That said........Let the Games begin!!! Bob Wold Moderator I think you all have done a good job in achieving the goals we set and continue to work toward greater things for all of us. Long ago when I was first getting involved in message boards, (almost 20 years now) I remember a spouse telling a sufferer that "they are only words on a screen" and online support groups weren't going to help. I knew then, as I know now, that that couldn't be further from the truth. I think that many times the written word can be far more impacting and important in someones life than the spoken word. I'm not sure why that is but maybe it has to do with how we process information. Anyone that has been online for any amount of time and using posts, IMs, PMs, email, Tweets, etc etc, knows how the written word can change a person's life, for the better or worse. Obviously some people see an opportunity to be destructive, sitting in their home attacking others and causing pain. (If I could find the guy that hacked my email I'd ......lol) Sometimes these public boards can become battlegrounds. I've seen some REALLY bad things happen. People losing jobs, relationships, police called, death threats, you name it. Not on this board though. When we made the transition from the yahoo group to this board, we all hoped we could carry over the closeness of the old group and that people would continue with the notion that this board is here to help people, first and foremost. On these types of boards, it's sometimes difficult to keep everyone on the same page. I've said it before and I'll say it again that I couldn't be prouder of all the people here and how everyone has kept this a safe haven for everyone. We've had a couple instances that could have gone bad and the only problem we had was the traffic jamb on the high road. Everyone here should feel proud of being a part of something that is so important for so many. Whether you've posted a thousand times or just once, your words can and have changed lives for the better. One thing I've learned is that you never know who all you are speaking to and what they need to hear. You never know which written word might touch some one's heart or soul that makes an impact on their lives. it just might be a word that makes someone say, "OMG, me too" and help them feel not quite so alone. "He who has a why to live can bear almost any how."Â ~Friedrich Nietzsche Giving someone else their "why" can be all you need to fulfill the same in yourself. Bob Happy New Year everyone. Rock the boat!!!!

Just a reminder. The hbwr seeds need to be cut or cracked open and just the pulp inside used. The RC seeds can be crushed whole and soaked. Bob

Sounds interesting. It does also come with some strong warnings and isn't something to mess with carelessly. It seems it raises blood pressure, not lowers it. Its effects on serotonin receptors, cortisol levels, mast cells sounds good. The fact that it lowers testosterone is a bit baffling considering recent studies but that doesn't make it a deal breaker. Interesting stuff Bob BTW I also agree that Skullcap works well and can help reduce anxiety. People that have added it to their psilocybin dosing have reported being much more relaxed.

Yes, since we still have a little way to go to match the $1000.00 I will post this on the general board. Thanks very much to those that have already contributed. Bob

Thanks for posting this. There is some good reading there. Bob

If your attacks fit a cluster headache diagnosis, such as same frequency each day, same time, same length of attack, it most assuredly wouldn't be caused by a physiological problem other than a screwed up hypothalamus. Bob

Up to you if you want to remove it. I didnt because I didnt want it percieved to be censoring anything or hiding anything. I decided today that I will write a complete history of all the "facts" as it needs to be done. Especially since I've already had two heart attacks and, well......truth does need to be documented. Bob

No secrecy. This was hashed out years ago. Seems to be being brought up again for some personal agendas. Agendas that certainly do not include helping cluster sufferers or helping move forward on better treatments. Bobb is correct in that Doblin has no horse in this race and has dedicated most of his life to researching compounds to help people. bob

About 10% of people with clusters have nausea and/or light sensitivity. Its one of those things that complicates diagnosis and why many of those 10% get a migraine diagnosis early on in the process. When she sees the Neuro on Monday, I would get out the other symptoms before the nausea and light sensitivity so the doc doesn't immediately zero in on migraines and not even hear the cluster symptoms. Bob

Its always best to discuss this stuff with your doctors. They know your health history and any risks that might pertain to you. Psilocybin is known to elevate blood pressure for about a 3 hour period. Most of the studies that have been done were studies that gave participants large doses where hallucinogenic effects were desired. From the ones I've seen, blood pressure went from an average of about 125 over 75 to about 140 over 83. Plus or minus a few points. Bob