First Annual Clusterbusters Convention

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The Clusterbusters held their first annual convention on July 15th, 16th, and 17th 2006 at the Marriott Hickory Ridge Conference Hotel in Lisle, Illinois.

Speakers: Dr Andrew Sewell, Dr John Halpern, James Joseph, and others to be announced.

Agenda: Saturday: Clusterbuster meetings and Meet and Greet
               Sunday: Speakers, Technical sessions, banquet
               Monday: To be announced

Speaker's Bios

Andrew Sewell, M.D Dr. Andrew Sewell received a BA in physics from Cornell University, a degree in medicine from the University of Connecticut Medical School in Hartford, completed a double residency in neurology and psychiatry at the University of Massachusetts in Worcester, and now works at the Alcohol and Drug Abuse Research Center at Harvard Medical School. He originally started studying cluster headache only in order to answer a fairly academic question about the relationship between abnormal neuroendocrine response by the hypothalamus and increased incidence of substance abuse, but quickly found it to be such and interesting yet understudied disorder that he is now trying to start a research program entirely devoted to cluster headache.
John Halpern, M.D. Dr. Halpern is a Harvard Medical School instructor of psychiatry and as associate director of substance abuse research at Harvard University's McLean Hospital and is at the forefront of a revival of research into psychedelic medicine. He recently received approval from the US Food and Drug Administration (FDA) to give late-stage cancer patients the psychedelic drug MDMA, also known as ecstasy. He is also laying the groundwork for testing LSD as a treatment for cluster headaches.
James Joseph (M.S. Indiana University) James Joseph is a researcher, teacher and author of the recently published book Psychedelic Perceptions: Why the Most Effective Method for Gaining Insight into Our Own Psychology and Spirituality is Misunderstood. While living and teaching in South America for three years, James began his study of traditional consciousness-altering medicines used by indigenous groups of Peru. Upon returning to his home in Boulder, Colorado he continued his research seeking to understand why the vast potential of the entheogenic medicines are virtually unrealized in the U.S. When not studying the sociological, political, economic and psychological phenomena, which structure our world-view, James spends his time biking, snowboarding and in the delightful company of his wife, Heather.
Ben Khan Ben Khan, from Eastbourne in the UK., is a long term chronic sufferer of Cluster headaches. Ben was the first to undergo Professor Goadsby’s pioneering research using PET that determined cluster related activity in the SCN hypothalamus. Ben’s background includes training with DAN (the Divers Alert Network) and is certified in advanced oxygen use by PADI (the Professional Association of Diving Instructors). Ben’s own research into oxygen therapy and its delivery systems has made him an authority on the subject and led to his design and creation of Clustermasx . Ben will be explaining how Clustermasx became a reality and will be demonstrating the qualities of this new system, which is now being used with amazing worldwide results. An oxygen delivery system, the first ever specifically designed for cluster headache treatment, for delivering pure O2 for maximum relief and effect. Ben and his wife of 22 years, Jane, have 2 children. Hannah 13, who unfortunately also suffers from cluster headaches, and Matthew 12, who mercifully doesn’t.
Douglas Wright DC Dr. Wright is a 30+ year veteran of episodic cluster headache. He is a practicing Chiropractor in British Columbia, Canada. He wrote and presented a literature review on melatonin in the treatment of cluster headache at the OUCH Convention in Vancouver, 2002. He is a founding Director of OUCH and is currently President of OUCH-Canada. Since joining Clusterbusters almost 2 years ago he has successfully treated his last 2 CH periods. He will be presenting a discussion and sharing his ideas on alternative thoughts for treating cluster headache.

Convention Report

Stats: Total attendance: 52

People were coming and going at different times. This also included my three grandkids that are my biggest inspiration for this work.

Longest distance traveled to get here, (as the crow flies): 8913 miles

(that would have to be one healthy crow)

Shortest distance: 12 miles ;-)

I suppose it would only be fair to hold the next one in the middle somewhere, although that would require us to be on a cruise ship somewhere in the Atlantic Ocean.

Saturday, July 15th, 2006

Saturday was arrival day and was spent with people meeting each other. Some of us have known each other for up to 10 years without actually meeting in person. I was very happy that 5 of the original Boston-6 were able to make this year's conference. The 6th would have been there except for some uncontrollable circumstances. He was at least able to speak with some of us via an international phone call. So, all in all, the 6 were there in spirit. I think its a great testament to everyone's dedication to our group and the work we are doing.

We had several informal Clusterbuster meetings, bringing people up to date and getting ready for the upcoming presentations. It was also the day Marriott had to figure out a plan when they ran out of smoking rooms ;-)

Sunday, July 16th, 2006

Description of presentations with editors notes

Following an early morning breakfast we began our day with a few opening remarks from me (Bobw) and moved to our first presentation from Dan Bemowski.

Dan gave an updated accounting and slide presentation of his revised CHATS data collection system. Dan, and those that have been helping with program design, have been working closely with Andrew Sewell, designing a system to collect valuable information from cluster sufferers. As you all know, the study of cluster headaches isn't rocket science, it's more difficult than that. Tracking and analyzing all the different treatments, untold variations and combinations of medications, side effects & different outcomes is difficult at best, and non-existent until now. There is now great interest from people at McLean, and Dan along with help from Andrew, will be applying for operational grants for the system. We will soon be able to supply other researchers with data that until now, has been impossible to gather.

Author James Joseph gave an interesting and informative presentation on the history of schedule 1 drugs and how (and more interestingly, why) these drugs ended up on Schedule 1. I think it is safe to say he was able to allay many of the fears that people have about these sorts of drugs. Placement in Schedule 1 seems to be much less a matter of safety issues, and more along the lines of political reasons. Even if people believe and support the real reasons for psilocybin and LSD et. al. being classified as Schedule 1, as being proper for society at large, they should be aware that Imitrex caused more deaths in its first year on the market than 60 years of LSD and 4000 plus years of psilocybin use, combined. New reports now of the dangers of using triptans and anti-depressants in combinations for headache treatment, are added to the safety issues that we all know about regarding "accepted" treatment plans. Its time for medical science to put safety and efficacy ahead of what is currently accepted, and offer cluster sufferers legal options that don't exist today. Our job at Clusterbusters is to offer up data and research that can no longer be ignored.

Dr. Andrew Sewell presented us with his slide presentation describing all the details of the collection methods and findings that lead to the publication of these findings in the July issue of Neurology.

Dr. John Halpern gave us all an idea of what is involved in the process we have already been working through at McLean and what we have to look forward to in the future. As I have found out over the last couple of years, it is unfortunately as much a matter of political hoops as medical issues.

Following Andrew's and John's presentations, I think it was abundantly clear to all in attendance, the dedication, passion and drive these two professionals have in finding a way to get much needed help and aid to cluster sufferers. The fact that the advancements both men have already made in cluster treatments has been done for the most part, on their own time and done out of a commitment to all of us. The fact that the article in Neurology was the first of it's kind to appear in a peer-reviewed journal, in approximately 40 years, and to have one of the most respected institutions in the world give it's stamp of approval to the article, is an incredible achievement. The huge obstacles, both political and medical that had to be cleared to get this done, were made clear to all. It is a process full of compromise and negotiations and our job is to supply as much ammunition as we can to overwhelm those that stand between us and safe/effective treatments. We have people here that are willing and able to do whatever is necessary to advance the treatments for cluster sufferers, with our health and safety in mind, in a way no others have been willing, or motivated to do. I believe they are willing to do whatever is necessary and to negotiate the future path for us, with only our health and safety as non-negotiable.

The study protocol, the design of how the clinical trial will proceed, including subject selection, treatment features,...the who, whens and hows the trial will take place, is near completion. We expect to submit it to the McLean IRB some time in September. We then begin the process of getting approvals of all the interested parties, and there are many interested parties, including but not limited to the IRBs, FDA and DEA. Knowing how many levels and how many desks the neurology article had to pass through, we can only imagine the desks this study will find itself before final approval.

It will be interesting to see if ingesting natural substances that have been safely used for thousands of years, will be approved for human use in trials, as quickly and easily as allowing surgeons to insert electrical wires deep into our brains, severing vital nerves, using dangerous combinations of man made chemicals, drilling holes in our skulls for open brain surgery or radiating our brains with radiation.

Near the end of Andrew's presentation, he announced the following. We are now in negotiations and finalized the details of a grant to McLean to secure the time and resources or Dr. Sewell. This research grant will be coming directly from Clusterbusters and will allow Andrew to spend the time needed to follow this study through all final approvals.

Following our late afternoon break, Ben Kahn gave his presentation of his Clustermasx. Using a couple test subjects from the audience, Ben explained the most efficient and most effective way of using his new masx. Ben's descriptions of the travails of designing and getting into production, one of the most important new tools that cluster sufferers have in battling cluster attacks. As you know, 02 is one of the best tools we have for all people with clusters and even more important to those people trying to detox and get ready to try the Clusterbuster treatment. Ben's dedication and commitment to help cluster sufferers was evident in his presentation and we will do whatever we can to help get his masx accepted as the masx of choice for cluster sufferers and available to everyone possible. This international conference was a perfect setting to display his work and to help gain international acceptance, as it should.

The long but productive day was brought to a close with a presentation by Doug Wright of OUCH Canada. Doug's wit and talents were on display as he discussed making the most of Non-Conventional Therapy in the Treatment of Cluster Headache.

Doug discussed the response to medications and treatment that are often frustrating to the patient due to variable effectiveness, mixed results and the severity of the pain.

The placebo effect, accepted if poorly understood response in clinical trials, causes people to respond both positively and negatively to an inert substance in ratios approaching the medication being investigated. Rather than discounting this effect, Doug proposes that the expectation of relief can be put to use in treatment. Choose to be well, was his battle cry. With an "understanding acceptance" of a condition (cluster headache) and modification of our perception of pain, one can increase their ability to manage the pain and avoid disability.

Doug's presentation included a review of the placebo effect, medical training and limitations and various mind - body techniques with more than a small dose of laughter throw in for good measure.

It's not easy to end a long day on a high note and keep the attention of those in attendance, but Doug's humor and the materials presented, did just that.

Monday, July 17th, 2006

Monday's morning session began with a presentation from Cathy Lind, of OUCH US. Cathy reported on existing and the future plans of OUCH US. As the Chairperson of the Advocacy committee, Cathy explained the important role OUCH can and does have in education and advocating for cluster sufferers. Cathy reported that they have begun the process of gathering together a collection of Cluster Headache references and materials for a Cluster Library to be made available for all cluster sufferers. As we all know, the education of sufferers is one of, if not the most important thing a sufferer can do for themselves and their supporters.

Cathy also announced that following Dr. Sewell and Halperns presentations in Milwaukee, a video library was begun with sufferers telling their stories on videotape. This collection will become very important in the future and will add a great deal of data and more importantly, a resource for others to use in understanding how far-reaching this disease is to the sufferer and family members.

The final presentation of the conference was deservedly reserved for our own TommyD (Tom DiStefano) who has been our long time historian and collector of all things important. Tommy gave a history of Clusterbusters and updated reports on efficacy numbers for Psilocybin, LSD and our latest addition to the list of choices, the LSA seeds. Comparisons of the numbers for the different choices and how they continue to stack up as better than anything currently available to cluster sufferers from mainstream medicine. Tom's dedication to collecting this information and preserving it, has allowed Clusterbusters to oftentimes have the answers before anyone asked the questions. He has allowed us to stay ahead of a curve that is constantly changing and requiring more data, more reports & more information. It was my pleasure to have tommy close out the regular schedule.

Tommy is a perfect example of what people can do and how many clusterbusters have had a positive effect on so many people.

We have taken on a project that has appeared either too challenging or not worth the time of many researchers. It has taken the efforts of dozens of people, understanding that all contributions are important. There have been no small contributions. No matter how complicated the machine and how intricate some items may be, it still won't work if just a few nuts and bolts are not installed properly and with as much care and dedication as everything else.

With each step a person takes, his imprint, in a small way, changes the contour of the earth. With each breath one takes, the makeup of the earth's atmosphere is slightly altered. If you can move, and you are breathing, and you are making an impact on the planet we live, changing the landscape of cluster headache treatments doesn't seem like a difficult task. It just takes a lot of moving that which seems immovable, and a lot of breathing new life into the group. If you're going to make an imprint, make it a positive one because it does change the future.

International Meeting of Cluster Organizations

July 17th, 2006

Clusterbusters invited OUCH Ca, OUCH UK and OUCH US to send a representative to the conference and attend a meeting to discuss ways we can work together and advocate for cluster sufferers around the world.

Official representatives from Clusterbusters, Bob Wold; OUCH Canada, Doug Wright; OUCH UK, Helen Kemp and OUCH US, Cat Lind, gathered together following the end of the regular conference schedule.

In usual Clusterbuster fashion, everyone still at the conference was invited to attend and add their thoughts and ideas on possible projects. We were all pleased to see additional members of the OUCH US Board of Directors/Executive Committee attend.

Many ideas were discussed that representatives would bring back to their own organizations for discussion.

One of the spore suppliers has offered free spores to any future cluster sufferer that is interested in farming. I am in discussions on this topic with the owner of the one of the largest suppliers and one that has done a great job of taking care of people with clusters that order his spores. Discussion centered around how we may be able to help him accomplish this offer. Problems that need to be worked out would include how he/we make sure that only cluster sufferers take him up on his offer.

OUCH US reported again about the resource library they are hoping to build that would be available to any cluster sufferer. Hopefully all the orgs can not only help this come to be, but also help make this resource known to cluster sufferers around the world.

Cat also discussed the video library that they began in Milwaukee and the possibility that this is also something that could be built with help from around the world, and available to researchers, doctors, educational programs and numerous other possibilities. Dr. Sewell added that one thing that would also be helpful in these videos would be accounts of how traditional medications have helped and hurt or not worked. The formulation of specifications on filming such as lighting, setting etc and a list of questions was discussed so everyone could shoot film and one person/group could edit them all together easily.

We discussed how we might all find a way to help Justin Ott finish his documentary. It's been obvious to many of us how important just the short clip of Chuck that Justin shot has been. Getting a full length documentary completed and distributed would be a major force in telling the story about cluster headaches.

There are many things we can and should be able to work together on and move cluster treatments ahead. It is apparent just from looking at the strides that clusterbusters has made, and those of the different OUCH orgs, as well as people like Ben Kahn and his 02 masx, that we can have a major impact on our own futures.

Working together and putting all our names as endorsements on projects, rather than working separately will make a huge difference.

We will be following up with the organizations in email and will be reporting any joint projects. There will certainly be some obstacles due to different organization goals and international laws or restrictions, but all felt it important to find ways to work together.

We will also be contacting other cluster orgs as well as attempting to get other "headache" organizations involved.

Details on how this will all work out, how it will be organized etc, will be forthcoming as we continue discussions. Our goal is to take some important projects that would normally be advocated by individual organizations, representing several hundred or even several thousand members, and be able to one day join together on a project where we could represent all cluster sufferers around the world. Instead of speaking for 200 members, we should be able to represent 250,000+ sufferers.

Final Notes of Interest

Upon registration, all attendees received a copy of the Clusterbuster CD written and recorded by our own Rex Tangle. I'm sure Rex would love to hear some reviews after people have a chance to listen to the cd.

Sunday evening concluded with a fundraising auction, attended by all those that still had enough energy to be able to raise their hands to bid. The auction raised $800.00 with the gem of the auction being a painting by the very talented Patti Keller. Besides Patti, people that donated for the auction included Paul Vignola, Helen Kemp, Cathy Lind, Anita Wiseman & a couple of anonymous donors. Thanks to all the donors and bidders, including those that weren't able to attend but bid online.

It was great to see many people that I had met in the past and hadn't seen for a while. It was also great to meet many people that I'd been conversing with in email but had never met. I want to thank all those that took the drive down from Milwaukee after attending the OUCH convention. It was especially gratifying to see and meet DJ from ch.com and his wife. I've known DJ probably longer than anyone on any of these cluster boards. It was over 10 years ago we first met "cyberly" in an old usenet newsgroup. This was before there was a ch.com, before there was a Clusterbusters or an OUCH.

Thanks to everyone, not only for your attendance, but also for your participation. This was an example of typical clusterbuster group participation that made it all a success. From donating items for auction, donating time and labor and donating your inspiration.

Thanks to Michelle for helping out with web work both before and during the event.

Thanks to Nani for all her help organizing and planning the event and helping out with the auction and MC'ing parts of the program so I could spend time making sure things ran smoothly.

To all the speakers, thank you very much for your well prepared, professional and passionate presentations.

Next up on our list of research topics into refining our treatment and looking for new treatment possibilities. More news on this to follow.

Parts of some of the presentations were video recorded. I will have dvds of these available shortly. If anyone is adept at editing dvds, and is willing to do some work to create a more polished product, please let me know.

Wednesday, July 26th, 2006 will be Clusterbusters 4th anniversary!!

Not bad progress my friends. Happy Anniversary to all the Busters.

Bob Wold

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