Psiloscribe

Thanks for posting this. Botox has shown some success with migraines and also has helped some people with clusters although its really hit and miss and takes time testing it in different areas of the scalp, face. Dr. Robbins who presented at last years Clusterbuster conference has probably don't the most in the US with testing out Botox for clusters. One more clue to help detail the whole vascular headache mystery. It's also very difficult to get insurance companies to cover it for treating headaches in the US. Bob

Professor Nutt and A. Fielding are aware and interested in our work and the relationship between clusters and the positive effects psilocybin has on them. I think they would be very interested in getting their hands on a cluster subject for their imaging work. Professor NUtt was a top government official on drug laws and was eventually ousted when he took the unpopular/anti-goverment stand that drug laws should be rewritten with penalties based upon actual harm rather than perceived harm. His list had alcohol near the top, LSD near the bottom and psilocybin OFF the list. Hence the reality that there is little to no room for common sense and truth in government think. Bob

We realize that Portland is a long way from home for many of you. We try to move the conference around so everyone can have a chance to have one nearer to their part of the country (USA) One day we hope to be hosting them internationally. We do have many members on the west coast so this one is for YOU. Hopefully many of you can take advantage of this years location. Whether its close by or if its in a part of the country you've wanted to visit. It is a beautiful area with many things to offer. Just think......people will be flying thousands of miles to be there. You might as well hop in the car and stop by to say hello!!! These conferences have been very important to our growth and to the advancements we've been able to make. Its our opportunity to introduce ourselves to mainstream medicine as well as local and national/international media outlets. Just attending the conference makes a statement and people are sitting up and taking notice more and more. I hope to see many of you there. If you're going to be there, or would like to but can't this time, let us know in this thread. I know a lot of you will be there but haven't yet filled out the registration forms. its getting o that time when we need to begin getting a head count to plan ahead. Bobw

Between stopping some meds and loading up on others, it's not surprising that you're stuck in a headache rut. Hopefully you did taper off the prednisone, but even tapering off can land you where you are headache-wise. You shouldn't mix imitrex and "sputs" as they both increase serotonin levels so be careful. also, using small doses of any of the psychedelics as "SPUTS" will have an effect on the next full dose and block it at least partially. I know how it is when you want to grab anything available to stop the pain but sometimes less is more. I've had those all day bangers where nothing works. At that point I would take a couple aspirin (Excedrin Migraine) and tried to sleep it off. I would suggest nothing but 02 until it breaks....and it WILL break. As Mad6string said, if you stopped a large or long term prednisone regimen cold turkey, that is not good. It has to be tapered or the doc has to give you a shot to restart your adrenal gland. Just a reminder to everyone.... Always discuss stopping or starting any medications with your doctor. Bob

The number of people in the study needs to be determined early on before the study is even accepted and approved. A "protocol" is designed and approved by all necessary agencies and review boards (IRBs). The original BOL study was designed for 6 people, all to receive BOL and everyone knew what they were getting. This is called an "open label" study. Once the 6 people got the treatment, the study was closed and results tabulated. The next round(s) should have more people. Some may get a placebo and no one will know what they got until afterwards. Placebo controlled trials are much more accepted as far as how well the tested drug does. So, once the number of people in the study has been determined and it has been approved, the money needs to be there to begin the study. Once a study is open, the doctors/researchers running the study will advertise (if need be) for participants. People applying to be in the study will then be interviewed and complete surveys to see if they meet the criteria set up in the protocol design. Similar to what Matty described. Bob

No, it really can't work that way. Although it is a reality that many times, the people with the money get to the head of the line, this isn't fair to everyone nor does it put need first. As wih all studies like this, people will need to complete questionaires to see if they fit certain criteria. At this point, these criteria are unknown and will be set up by the researchers. People will not know if they meet all the criteria and medical guidelines without applying to be included in the study. Bobw

Here is some of what is happening on Bromo-LSD at this time. Reporting on this type of research has to be done carefully and details need to be released at certain times depending on which early stages are complete. That said, the next round in Europe is being planned and worked on now. Study design and approvals are being worked upon. The research investigators have been pulled together. We are excited about some of the people that wanted to get on board with us. We don't have a time table yet but this is moving forward very well. We are also working on a couple different fronts for getting started in the states on a BOL (Bromo-lsd...just so you know they are the same thing). This would hopefully be a larger study than the 6 person study in Germany. We are looking at, and working on, different options so that we get this underway as soon as possible. Once again, as details are finalized and we are able to announce certain milestones, you'll read it here first. Hopefully we will have many more details ready for release at the conference in Portland. Some of the researchers will be there. One thing we will be doing is supplying the BOL for the studies. Additional funding is being sought by the research teams to cover much of the costs as these studies will be expensive. The more people that are included, the more the costs involved so everyone is working to make these rounds as large as possible. All of these steps are being worked on at the same time so there is no lost time. The BOL for the first study in Hannover Germany cost Clusterbusters $10,000.00. These funds were raised by our members making donations of $10.00, 25.00 and $100.00, or simply by purchasing an auction item for $5.00 at a conference. We are hoping to be able to do the same for the studies mentioned above. If anyone would like to be a part of this fundraising effort and help us move this forward, please feel free to hit the donate button and mark in the notes, BOL. All funds marked as such will go toward Clustebuster's supplying the BOL necessary to make these studies happen. I will be making some continuing fundraising posts as we are at a critical junction so I hope you don't get tired of me holding my hand out. I know everyone does what they can and we understand that this work needs all sorts of participation. It's not just about raising money as important as that is. It takes people helping each other, people posting results, people spreading the word of what we're doing, people stepping up and lending a hand. I want to thank everyone for years of support. We've been able to make slow but steady and important progress and have only been able to do that with your continued support. thank you all, Bob

Psilocybin and OCD http://www.maps.org/research/psilo/azproto.html http://www.msnbc.msn.com/id/16304852/ Bobw

The oxygen is very important if you can swing it at all. It's always best to do everything you can to get ready for these treatments to give yourself the best chance. It can change the way you treat your clusters for a very long time. So, its best to take the time to get it right the first time. On another note, I don't know if you've read any of the research on OCD but it could be that you could end up finding an improved treatment for that also. I don't want this to sound like one of those commercials selling the cure all for everything from constipation to male pattern baldness.......but.... Psilocybin has been studied as a treatment for OCD and they have had some very impressive results. I could point you to some of the study results. Also, you don't need to detox from the Prozac. Bobw

Hello friends, Our new Clusterbuster Corporate website is now open for viewing. The site will be the place to go to get the latest on our research and news. The site is still located at the old address; http://www.clusterbusters.com/ A big thank you to Doug, Sherri and Michelle for all the hard work that went into bringing this new site to life. As you may know, most of the old files that contained the information on the different treatments, including the FAQS, can still be found on the Clusterbuster message Board in the "Files" section. http://clusterbusters.clusterheadaches.com/ The 5th annual Conference is coming up. I hope to see a lot of you there. I know there are many options for you and finances are tough for many these days. Doug and Sherri are putting together an excellent program again and we'll be presenting the latest work on Bromo-LSD as a treatment and update everyone on the latest research studies. http://www.clusterbusters.com/convention5.htm Bob

About 10% of people with clusters have some family history of clusters. Compare that to the general population of somewhere around .3 to .5 percent. Looking at it the other way, 9 out of 10 of us are the only member in the family that ever had clusters. So, it seems that if someone in the family has them, it's more likely that they'll show up again than in the general population, but, what part of that may be from genetics and/or environmental factors, who knows. Bobw

The easiest cubensis strains are probably; Equador B+ Hawaiian can grwo pretty large Puerto Rican can produce large numbers but usually smaller They are all very similar in potency. Bobw

1. we usually suggest starting around 10 just to make sure you dont have any advrse effects from them. A couple people (out of ?hundreds) have had a little difficlt time tolerating largerdoses. There are a few things in there besides LSA (ergot related molecules). That said, 30 has been a good place to start for the vast majority of people. 2. All it takes is a couple ounces of water. Doesn't taste real good so the more water, the more you need to get down. 3. Baggie in the fridge best of luck, Bob

As to what has been mapped in our brains, the only thing so far is that we have a slightly increased hypothalamus mass. Whether that is a result of something else or a primary factor, who knows. As to the question of prior use possibly being a factor, you can cross that one off the list, BA. The vast majority of people trying this treatment had never before used psychedelics. I would venture a guess based upon discussions with hundreds (thousands?) of people with clusters, that the percentage of people that have clusters and had used psychedelics prior to onset, matches the national averages of psychedelic drug use. I think its less than 10% of US adults have used them and I'd think that number would match with cluster people. Bob

Wow,,,,,,,all that comes to mind is....... I dunno.

CArl, You know I couldn't agree more. Bob

If the following link doesn't explain why we need to push for more effective treatments, nothing will. I spoke with Will several times. I wish he'd called me Sunday. I dislike so much about the new direction and focus of conventional medicine being surgery. They tell the patient that "this is your last option, we have nothing else." When that doesn't work, what is a 24 year old kid to think? That he can wait until he's in his 50s and maybe grow out of them? What the medical community had to offer was an occipital nerve stimulator and high doses of oxycontin. As you all know, that regimen doesn't lend itself to being able to try our methods successfully. will took his own life on Sunday. The rest of the details I'll leave out with due respect to the family. http://www.legacy.com/obituaries/houstonchronicle/obituary.aspx?n=will-erwin&pid=142883042 Bob

Oxygen will be available at the conference. I usually take a small maintenance dose right before flying. never had a problem on a plane since doing that. Bob

I think this is a very good idea. Thanks for bringing it up. I dont know if the Insurance companies here would go for it but your idea of a related association just might fly. With the changing landscape on health care here in the states, its certainly something that common sense says would be a good idea. We will take a look at this. Any and all help on this is appreciated. Bob

I'm very happy to hear you've put the gamma knife on hold. I did the same about 8 years ago when they had only tried it on about 6 people with clusters and I was already scheduled. i decided try mushrooms first and havent looked back since, except to thank my lucky stars. I'm actually pretty upset about the direction of some of the cluster medical community (doctors, researchers) devoting all their resources toward different surgeries. They all continue to show poor results. Two separate 6 person studies on the DBS have each caused the death of someone in the study, yet they continue. One has to wonder if the $150,000.00 price tag has anything to do with it. I actually though they had given up on the Gamma Knife some time ago. Bobw

All I can say is Thank you all very much. I do appreciate all the well wishes and kind words. And Fun Guy, there is always Portland to make up for your gluttony. ;-) Thanks again everyone, Bob

Tingeling, No one should ever feel bad about going on and living your life as you see fit. That includes you. That's why I do this. That's why WE do this. So people have the freedom to live their lives. The reason this work moves forward is because everyone plays a role. Although donations and volunteering are necessary and greatly appreciated, it takes so much more. People reporting a lack of success make us work on the research and the details to try and find what will work. People reporting success is the only reward needed to continue and again helps us refine the treatments. No one plays a small role in this, including all the cluster sufferers and families that don't even know we exist...yet. Even they drive us to do more and faster, and better. Bob Welcome to the machine P.S. thanks to everyone for your kind remarks on the other thread about the video.

Hey madman, Good to see you. Seems to be Cluster season. Bobw

Thanks Shocked ;-) Does anyone remember Shock Theatre? Bobw

Check out the Research & News posts and the Clustrbuster Files and you'll find out all you need to know ;-) bobw