When I started Clusterbusters, I knew I had chosen a difficult route and uphill battle in getting the things accomplished that so many of us knew needed to get done. If we were going to bring cluster headache treatment out of the 18th century and into the present this was not the easiest path. Making positive changes on a global scale are never easy.
One of the biggest obstacles we had to overcome turned out in the end, to also be one of our biggest helps in bringing about awareness. Psychedelics.
When people questioned their effectiveness or safety, we took the approach of doing more research, providing more evidence & explaining the facts. If people didn’t understand, our job was to educate. If people understood but were afraid, we provided information to help ease the fears. The only way to do this was provide the truth and the facts.
When we put ourselves “out there” and expanded the scope of the conversations, and proved that reasonable people can discuss these options without ending up in jail, our reach grew and we refused to hide facts that could help people in need.
Over the years we have been able to get more press and exposure for cluster headaches and those that suffer, than had ever happened leading up to that point. Although many people tried for years to get exposure in the media, it was never easy to get anyone to listen. We didn’t have Jerry Lewis. We didn’t have what was thought to be “newsworthy” and part of this was also made more difficult because we had all spent years hiding our condition rather than trying to show what was happening or try to explain it to people.
What we did have were psychedelics. What we did have were people that were willing to show themselves in life changing chronic pain and what we had found that could help people.
Whether people like it or not, and some did not like our story, we finally got the attention of the media as well as politicians and the medical community because we were using psychedelics. Now there was a story that news outlets wanted to run. Who are these people that are suffering so much that they would be turning to street drugs to treat their pain. The fact that we were suffering from something nicknamed “suicide headaches” and all the lives that had been destroyed over the years was never enough on their own.
The first front page story in any major newspaper regarding cluster headaches was a story of someone treating their clusters with mushrooms and growing his own medicine.
Almost every headline or TV trailer included the word psychedelics and there have been thousands of them now. The hook was psychedelics but the story was in the people. The story was what we were all living with and what we were trying to do on our own because the system wasn’t being of much help.
The first “doctor” to prescribe psychedelics for cluster headaches was done on national TV for all the world to witness. Magic Mushrooms (psilocybin) were used to treat cluster headaches on an episode of House. This was the first time clusters ever made their appearance on television and described as a serious condition.
When the producers of the show were contacted, they informed us that they had taken their information and developed their storyline based upon the information on our website. They then followed up this original story with another along the same lines when they had Dr. House treat his migraine headaches with LSD.
When the facts were put out there, the medical community could not run from the facts. As more and more stories went out and people went public, they could not ignore the facts of the molecular similarities between what we were using and having success with, and the chemical activities in our brains. As more and more discussion occurred, more and more doctors and researchers agreed that it was understandable that these substances would work.
In many cases, our hook was the psychedelics but in the end, the stories most often centered upon the people and the condition and either didn’t focus on the psychedelics or completely ignored the psychedelic angle and the facts about the people and what clusters do to people, was all they needed for their story. Psychedelics may have opened the email or enticed someone to answer the phone, but it was the stories of strength and survival that would become the news.
