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A little help from my friends

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I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet.

Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible.

Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters.

We've been able to help thousands of people that for the most part, had exhausted all other options.

My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge.

We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment.

We have the top headache specialists in the world attending our conferences.

We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators.

We've completed research that showed the efficacy of LSD analogs like BOL-148

We have done research on LSA

We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters.

We have research starting in the next month on the genetics of clusters headaches.

Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place.

When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first.

I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members.

Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE.

We are an open source organization.

We do not only help people that pay for the help.

I write all of this for one reason.

This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done.

This message board is responsible for saving lives and for all the accomplishments that have come along the way.

I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves.

I have poured a large portion of my life into not only this board but what this board represents.

I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away.

This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision.

I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support.

We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes.

All I ask is that everyone please respect the board, respect the administrators and respect each other.

You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can.

Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before.

Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people.

The administrators of this board have done more work over the years than anyone here could imagine.

Please, respect the board, respect the administrators and most importantly respect each other.


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Bob, I think that would have gotten a standing ovation if it had been a talk.  I couldn't agree more.

Humbleness and humility is the only thing that allows us to uncover the truth of the situation.  We all uncover "truths" in our clusterbuster exploration but to me the most important part is to remember that these truths are specific to our situation.  I have a couple random drugs  that if taken occasionally can abort a cluster, but they have never worked for anyone else.  Melatonin helps a number of people but gives me a big friggin cluster.  Moxie can get rid of some headaches with HARD ALCOHOL!  On and on I could go with weird things that throw a monkey wrench into the "all clusters behave like this" kinda thing that we all want to go into once we uncover information that is specific to some people or just ourselves.

To me the important thing to remember is that NO ONE anywhere knows what is going on with cluster headache.  No one can say any one thing for sure about cluster headache besides the fact that it is a debilitating condition and most of western medicine is determined to let us figure it out on our own.

We all have our own situations, we all have our own experiences.  By listening and sharing our stories we can compile our experiences into something that has the potential to help untold amounts of people, but not if we lose sight of the individualness of the situation.

The brain is too complicated (and most likely CH as well) to have a one drug, one thing, one protocol approach, at least at this point.  Hopefully someday it will be simple and we will have the "everyone do this and you are fine" scenario.  Until then, remember that the most helpful thing to achieve the goal of truth is to remember and realize the difference between the things we think, the things we experience and the things we know.

pain free days to all (not likely for me but the headfull of ketamine is getting me by)


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