Today I’d like to reveal to you all what went down day 3 of the conference which I made it all the way through! I did have to leave with the help of my good friends John Bebee to abort a bad KIP 9 cluster attack which started right there in the conference room. Luckily for me the Cluster Busters organization had the foresight to put an H tank outside the room with a 40 LPM regulator and an optimask. He helped me manage my breathing properly and everyone kept checking up on me, these people care more than most of my own family members it’s amazing! Before I go any further I want to thank my grandparents Eleanor & Harry who sponsored me for the trip and who make sure I get any medication I need regardless of its status or legality they know I am fighting for my life every day. I also need to thank my Mother and caregiver Alicia who drove 14 hours straight there and back for me just so we could have all the comforts we wanted with us. Now lets get down to what happened at the 3rd day of this awesome conference put on annually by the Cluster Busters organization, and just so you know next year it’ll be in Chicago. I hope to see as many of my cluster family there as possible!
The day started with a talk by James Fadiman a phenomenal speaker who gave a talk entitled “Safe, Therapeutic, and Sacred Journeys” which was extremely enlightening and made me feel much safer about utilizing the “busting” method to get rid of my cluster headaches. He spoke openly about the use of psychedelics at less than recreational doses and slowly upping them to be therapeutic instead of simply complying with the recreational doses out there. He also spoke to us about the nature of these drugs and generously donated and signed several books in the auction, you can find his book here. Please buy all your Amazon products through Amazon Smile and choose to donate to the Cluster Busters. I spoke to Dr Fadiman, or as he prefers to be called Jim, it was a very enlightening experience and he encouraged me to keep in contact heck he even read my blog posts which I never expected that is an honor!
Next up was the final auction, I’d missed the first one so I had money burning a hole in my pocket that I’d saved intending to spend it there at the conference. I won a copy of Joanna Kempner’s new unreleased book for $30 as well as the mosaic artwork by Pat Michell for $225. That was it for my participation in the auction. Next up was Dr. Anne Calhoun and patient Timothy White who were there to discuss the Pathway CH-2 Clinical Trial. Tim is from Germany and speaks fantastic English he presented very well and answered questions intelligently I think we were all eager to hear the patient point of view on this so we were all glad he was present at the panel! Afterwards we took a break and then the group picture which was a real pleasure, I got to be a part of that and thoroughly enjoyed it.
After the picture Emmanuelle Schindler presented the findings from the ClusterBusters medication use survey two years ago. We learned some amazing facts from the survey for instance we learned that Psilocybin Mushrooms, THC, and Oxygen are the 3 most effective treatments for Cluster Headache according to the survey. We learned that cluster headache sufferers are significantly more likely to be addicted to alcohol and cigarettes. Additionally the survey revealed that most sufferers are hit in the right eye and that very few of us get clusters that alternate on both sides(lucky me). What I found really interesting was that 30% of cluster headache survivors that answered the survey find some relief with psilocybin mushrooms and a further 30% find complete remission for a time now those are significant numbers! Also interesting was that most people went chronic when taking Verapamil which is true for me as well, and it trumped all other medications in the survey! Needless to say all the data was seriously interesting and I will probably write an article on the complete data set when I can find the entire thing online. It was a great presentation and we all thank Ms. Schindler for compiling this data for us and presenting it so well!
Next up was president and CEO of Savant HWP which stands for health, wellness, and prevention Stephen Hurst. He was there to talk about an exciting compound which shows amazing amounts of promise for the cluster headache community known as BOL-148!This new substance is quite similar to psilocybin in nature without the psychedelic trip effect that is typically found with the use of psilocybin mushrooms. We were told the company has a 6 million dollar grant to work on the compound. They plan to start trials in Europe and then move on to the United States later. I’m sure many others including myself support all research on this compound and hope it will someday be available to all cluster headache sufferers around the world. This could prevent so many suicide attempts successful or not they just wouldn’t happen nearly as often!
It was then that we took about an hour break for lunch and were told the speakers and raffle would commence again at around 2:30PM. We went to our room and ate a quick lunch and were back to the conference room with plenty of time to talk to folks and get my oxygen concentrator set up which is for my vasculitis and helps me to breathe with the lung nodules. I got lucky when the raffle started I didn’t win the cluster busters hat I wanted badly but I did win some mushroom shaped Christmas tree ornaments made by Martha Stewart living, I wonder if she knows what she’s done lol! Anyways my Mother and I were happy to have contributed some money to the total raised for the ClusterBusters. Heck I’d already won an unreleased book and a mosaic which is beautiful, it’s called “Circle of CH Friends”! I was quite proud to donate $100 in Amazon Gift Cards to the raffle split 4 ways for the winners it was a blast to see all the smiles as I emailed out their virtual gift cards!
After that talk Justyna Blake of Electrocore LLC made sure we learned about their new non invasive vagus nerve stimulation device which is currently part of the FDA process. This is an external device that will simply be held to the nerve area and will supposedly provide relief. We saw a small demo unit which was hollow at the conference but unfortunately I was too sick to think about it and really ask to take some photos for the blog. Perhaps I’ll show the article to electrocore and provide an update when they send some photo’s over they seem quite friendly. Electrocore reports that in their finding thus far the vagus nerve stimulation will work for those who feel the effect initially, but for those who it doesn’t work for it’s not worth another try as it has proven to be ineffective if you aren’t responding from the get-go. Don’t let that get you down thoughin Electrocore’s findings some patients with cluster headache had up to a 50% decrease in attacks which is quite significant. Obviously this device isn’t a cure, but it does seem to show a whole lot of promise.
After Justyna a young teacher hailing from Florida named Lisa Hertz took the podium listed as an inspirational speaker. I was thrilled that she had asthma too yet deals with it quite well having completed marathons but not just on land, oh no this lady can swim! And she can swim far Lisa informed us that she’d recently competed in a 24 mile swim and completed it despite her cluster headaches and dangerous asthma. I learned perhaps someday, somehow I can go back to heavy lifting…maybe someday I will feel the thrill that comes with picking up 500lbs with your back and making everyone in the gym shudder when you drop it on that last repetition. Lisa taught me that you can be successful with these cursed headaches and be a real athlete even as bad asthma complicates everything! Lisa is a very successful woman who like me is averse to recreational drug use, so it soothed me to hear that she uses magic mushrooms to bust her cycles and with the comfort of the proper coaches has gotten on track with her dosing. Knowing successful people like Lisa, Todd, Bob, and Dan really made me proud to be a part of the Cluster Buster family. Lisa now knows the value of these psychedelics which can be used to heal people and sees no reason why compounds like this should be out of reach for medical professionals! Congrats Lisa on finishing 2nd in your race, may you place in many more marathons in the future!
The next two talks were from a supporter named Alexis Williams and Bob Wold to close the meeting. Alexis did a spectacular job letting us in on the caregiver’s point of view and I really enjoyed her session although it was a bit hurried due to time constraints. Honestly though we must all applaud Bob Wold and Lee Markins the two men who held this thing together and made talks happen. I also would like to thank Mollie Markins, Lee’s beautiful daughter, who shot fantastic video of the entire event. Lastly I have to thank John Bebee for showing me I need a higher flow regulator and for helping me get to the O2 even when it interrupted a conversation he was having. Thanks to all my CH family who went you all know who you are it was a very special few days and I hope to be there again in Chicago for next years 2015 Annual Cluster Busters Conference! Thank you all for reading and I hope you’ve taken the time to enjoy my coverage(though it is late as all hell) of the conference! Sorry for the late and delayed articles my health is on the decline lately but I’m sure you can all appreciate that.