One of the major issues our community has had to deal with over the years in getting proper treatment has been the difficulty many of us have in getting a proper and timely diagnosis. Things have been getting better but there are still too many people waiting years for a proper diagnosis.
We are happy to announce that Clusterbusters is working with Dr. Morris Maizels, a headache specialist, to validate an online headache diagnostic tool that will help individuals receive a correct diagnosis more quickly.
This tool is currently in its final development stages and we need your help in fine tuning it. We all know that there are some major symptoms that easily detect cluster headaches. There are symptoms that some people experience in addition to these that sometimes cloud the initial diagnosis. We need to identify these symptoms and your participation in the process is needed.
Information about the study can be found at: https://clusterbusters.org/current-studies/chat/
Please take a few minutes to complete the survey and if possible, participate in a brief telephone interview to review the output of the survey. We are looking for as many survey completions as possible. We are especially interested in individuals with a known or suspected diagnosis of cluster headache, with variants or unusual forms of cluster headache, or who were mis-diagnosed before receiving a correct diagnosis. Even if you prefer not to participate in the telephone interview, it will help us to receive as many surveys as possible.
Your help now will help the entire community in the future.
Thank You
Bob Wold
President
Clusterbusters Inc.
There has been a lot of misinformation going on (as is often the case with social media) regarding medications and other issues.
Yes there is a lot of misinformation out there and misinformation about, misinformation.
Yes many myths get carried forward but if you look in the right places, you can always find the truth. It is out there.
In our case, it is not a myth nor is it passing off placebo effects as actual positive results regarding some psychedelic drugs and the illness/diseases that they can positively treat.
First off, lets talk about the placebo effect. This can and does happen with medications. It is considered in clinical studies and it compares the effectiveness of a medication to the effectiveness of a substitute that is not treating the disease, such as a “sugar pill.”
For anyone to say the psilocybin is a placebo, means that the person stating this does not understand what a placebo is or the effect they provide. Anything can be used as a placebo. Ritalin is often used as a placebo. That does not mean Ritalin is not effective for many conditions. It would be used as a placebo because it is not effective in treating whatever it has been put up against in the study. Ritalin is used in many studies of psychedelic drugs. It will give a little “buzz” so the person knows they actually took a medication and not a sugar pill, but it will not treat whatever the psychedelic is being tested upon.
If the placebo (Ritalin) is 25% effective and the psychedelic being tested is 45% effective, there is evidence that the psychedelic is “more effective” than the placebo, therefore it is having a positive effect on the condition itself and not just having a psychological effect.
Placebos are funny things. If in our mind we think that we are taking something that will help us, we will sometimes see an improvement, but usually only for a brief period of time. This is why we often take a new drug for our clusters and it seems to work for a couple weeks but then our bodies seem to find a way around that medication. In most of these cases, it was just the placebo effect. A change in how our bodies react to a new drug.
When people report that they have had success using psilocybin or any other medication, for 10 years, it is certainly not from a placebo effect. Let’s also be clear about something else. These reports are not from just one person, or even a dozen people. These reports come from thousands of people and have been coming in for 15 years.
Psilocybin has been tested many times in clinical studies. These studies have proven psilocybin effective in treating many conditions. It has been tested for safety and the fact that these studies have proven its safeness, is obvious in that the FDA has approved its use in clinical studies.
There was one study done at Harvard University that showed the effectiveness of psilocybin in treating cluster headaches. This study was published in peer reviewed medical journals. This case series is not just considered more “anecdotal” evidence.
However, let us look at the word “anecdotal” and understand it’s meaning as some people don’t seem to understand the significance of anecdotal evidence.
Doctors write prescriptions every day, based only upon anecdotal evidence, especially for cluster patients. The only reason doctors write prescriptions to people with clusters for something like topamax is because of anecdotal evidence. It wasn’t tested and approved for clusters. It started to show positive effects on people with migraine so doctors wrote it for clusters as a test. As more and more people started to say they were getting some relief, this anecdotal evidence caused more doctors to write more prescriptions. It wasn’t a “study” that caused people to start getting treated with topamax.
Let’s look at Viagra. It is being used now for erectile dysfunction only because of anecdotal evidence. It was being tested as a heart drug, to treat angina, and was not showing good results. During the study, people were reporting this strange side effect and the “little blue pill” became a best seller. Strictly based upon anecdotal evidence.
Every time a doctor prescribes any medication for your clusters other than Imitrex, it is being prescribed because of anecdotal evidence. Every hand me down drug is handed down because of anecdotal evidence.
Clusterbusters has been around since 2002. People have coined the term “busters” for people that support our work. You don’t need to have ever tried psychedelics or even have cluster headaches to be a supporter and considered a “buster.”
If you’ve helped someone “bust” their cycle, I would consider being labeled a buster as a good thing. We have buster doctors, buster lawyers, buster judges, buster actors, buster atheletes, buster preachers and buster dentists. We have cluster teachers, cluster painters, cluster rockers and cluster bunnies. Some of us are cluster healers and others cluster censors. Call us what you want but we’re all cluster survivors.
As far as Clusterbusters and science, I think it’s pretty apparent to anyone that has looked at our site or follow what we do, to see that we are very interested and vested in science. If you just take a look at the schedule for conferences, you’ll see our attraction to science. We were actually built upon the science of cluster headaches and the science of treating cluster headaches. I would think that everyone would concur that our first study with Harvard was science at its best. Research is science. We didn’t use google as our scientist as some do. We used actual scientists and laboratories and all that highfalutin science stuff.
I would consider the genetic study that we are collaborating with doctors and geneticists at McGill University sort of scientific.
We have doctors/scientists/researchers making presentations at our conference. This is an educational conference where cluster patients and their families can learn about cluster headaches, including the science that is known, behind them. It is also an opportunity for these headache specialists to learn from the cluster community.
As far as the pharmaceutical industry goes, I personally have a very close relationship with them. They keep me alive. I’ve had two heart attacks and without them and several of their drugs, I would be dead. I consider that a pretty close relationship.
Clusterbusters understands that millions of people with cluster headaches rely upon the pharmaceutical industry to treat their clusters as well as they can. This will not be changing any time soon.
We feel it’s important for the patient community to work with this industry to help them come up with better and safer treatments. The pharmaceutical industry seems to agree. It was Clusterbusters that worked closely with Eli Lilly to help bring about the first phase three study of a new drug for cluster headaches in history.
The pharmaceutical industry as well as the medical device manufacturers have come to us for our input in how to improve the treatments they offer.
Clusterbusters recently got a back-handed compliment from one of our detractors that said it was good that Clusterbusters had finally come around to approaching, working with and embracing the medical and the pharmaceutical industries. This could not have been further from the truth or reality. In fact it has been the other way around. We have not changed one thing in our approach or our direction. The truth is that more and more the medical and pharmaceutical communities have embraced Clusterbusters and our work. Our door has always been open and those that are in the business of helping people with cluster headaches are walking in our door.
The pharmaceutical industry, the medical device industry, some of the best headache specialists in the U.S., other patient groups, national headache organizations, and several “alternative” treatments are always represented at our conferences.
They all want to hear what the patient community has to say. It’s a shame that there are some small corners of the internet that we can’t get these messages to. All we can do is put the information out there. We are confident that all the people that want to be a part of the solution are listening.
Clusterbusters has from its inception, been about providing as much good information as possible to everyone through what is called an “open source” policy. If we know of anything that can help people, it is made available for discussion and for each individual to consider. We do not believe we should be deciding what people are allowed to have access to or decide what is the right path for people to take in treating their condition.
Clusterbusters has never directed anyone to any one particular treatment. There is a very good reason for this. There is and never has been one treatment that works for everyone.
It is not our mission or job to determine what information we will share with you. It is our mission and job to share ANY information we have that will help people lead the best and most pain free life than can while living with cluster headaches.
As a patient organization, funded by patients, our biggest hurdle has always been getting our messages out to a larger audience. We can’t afford a 10 million dollar Super Bowl commercial but others can. Yes we’ve been able to get information out to tens of thousands of people over the years and help them lead better lives but there are approximately 7 million people worldwide that have cluster headaches affecting their lives. Millions of those people do not know the basics in effective treatments including high flow oxygen. We have always understood the need of help from the organizations that can reach the larger audience. Our efforts over the years are now showing results in an exponential factor> Those agencies, organizations, companies and individuals that have the ability to reach the masses are coming to us and helping us spread the messages we have offered for years. This has been achieved through the hard work by motivated advocates refusing to take no for an answer. Our patient community has learned that when they advocate for themselves, they are also advocating for everyone in the community. They have made incredible strides in improving the lives of everyone currently in the community and everyone that will become a part of the community in the future. When you teach one doctor about best practices in treating clusters, every patient that sees that doctor in the future will receive better treatment.
It is not Clusterbusters mission to decide which doors people may want to open in a search for better treatments. The reason for this is simple. It saves lives. People suffer with this disease for 30, 40, 50 years in some cases. If you put a cap on which options you are willing to share, people run out of options and run out of hope.
Clusterbusters is proud of their accomplishments over the years since 2002. Foremost are the tens of thousands of people living pain free lives using novel treatments or helping sufferers safely and more effectively using mainstream medicine.
We have worked with researchers at Harvard University, Yale University, West Georgia University, McGill University and others. We have worked with pharmaceutical companies including Eli Lilly and Xenon and others, helping them to develop safe and groundbreaking research and clinical studies.
We have worked with local, state and federal government agencies in numerous areas of research, funding and legislation. Our work with SAMSHA went directly to the agency that exists as the last resort for people that have lost all hope and to let them know that there is a community that offers the hope they need to continue living.
The Clusterbuster conference. Where mainstream science meets citizen science and work together. But even more importantly, where people that need help, meet people that want to help. It’s really that simple.
As part of our ongoing commitment to providing meaningful information, resources and support for those living with cluster headache, we wanted to share some information about an FDA-cleared, non-invasive, hand-held therapy called gammaCore™ (non-invasive vagus nerve stimulator), which has been shown in two clinical trials to treat pain associated with episodic cluster headache.
Here are some fast facts:
If you’d like to learn more about whether gammaCore may be an appropriate treatment option, talk to your healthcare provider and visit gammaCore.com.
gammaCore is available by prescription only. US Federal Law restricts this device to sale by or on the order of a licensed healthcare provider. Please see Important Safety Information. Please also see the gammaCore Instructions for Use.
We’ve joined the American Migraine Foundation to fight debilitating head pain together.
As part of our ongoing commitment to providing meaningful information, resources and support for those living with headache diseases, Clusterbusters is thrilled to announce our new partnership with the American Migraine Foundation.
The American Migraine Foundation is the official resource for millions of Americans living with migraine disease and other head pain diseases seeking reliable information about diagnosis, treatment and advancements in research. Launched in 2010 as a patient support and advocacy effort of the American Headache Society, AMF’s mission is to mobilize a community for people living with migraine and their support networks and to drive impactful research into the third most common and sixth most disabling disease around the globe.
“Clusterbusters is a cornerstone organization in the cluster headache world. It is truly an honor to work alongside them to elevate our voices for increased research, support, and advocacy for the cluster community,” says American Migraine Foundation Executive Director Meghan Buzby. “We look forward to making a stronger impact together.”
Like Clusterbusters, the American Migraine Foundation is dedicated to helping people with headache disease live meaningful and pain-free lives. We’re so excited to join forces with AMF to provide support, advocacy and treatment innovations to people living with these disabling diseases.
The American Migraine Foundation supports people living with migraine and other head pain diseases by:
We couldn’t be more excited about this collaboration. Be on the lookout for additional resources and enhanced communication from our team in the very near future.
2017 Conference
Presidents Report
This year’s conference in Chicago was both a huge success and an exercise in adjustments on the run for all the volunteers and especially conference coordinator Eileen Brewer.
We had a sell-out crowd with over 200 attendees from 6 different countries. With the standing room only crowd, we had to make some adjustments on side sessions and increasing the size of the main meeting room.
The President’s reception on Thursday night went very well. The increased attendance was handled well by all the volunteers running registration. There were many 1st timers arriving and everyone tried their best to welcome them and make them feel at home. The main purpose of the reception is to give people a chance to meet new friends and rekindle old friendships. I want to thank everyone that was trying to greet the newcomers. The reception allows people to settle in, meet people and register before the conference presentations begin.
Remarks to follow on portions of the schedule as the weekend proceeded.
September 15, 2017
Opening Remarks
Eileen Brewer opened the conference with an inspiring presentation that would set the tone for the conference. Thank you Eileen for your opening remarks. Well done.
Introductions with Ainslie Course
Standing in for Dan Irvin, who could not make the trip this year due to illness, Ainslie Course did a wonderful job facilitating one of the most important parts of our program. Everyone in the room had a chance to introduce themselves and to give a little background information. People may discover neighbors they didn’t know they had or find an instant cluster connection with someone living 4000 miles away. This is an important part of welcoming everyone into the family. Well done Ainslie.
Throughout the rest of the conference, Ainslie did a wonderful job as MC and kept us on time and with a very good flow for the program. This is not an easy task and Ainslie did a remarkable job.
Presentation: Bringing You Up to Date
Bob Wold
As we had such a full schedule this year, there wasn’t a lot of time available to detail a lot of what has been happening this year. I can now give more details on some of the items I was able to highlight during the conference.
This year, 2017 marked 15 years since Clusterbusters was formed to advance research and became the year that we finally reached our goal of our original mission and that Clusterbusters was founded upon. Our research that began at Harvard has finally admitted the first cluster patient in an FDA approved clinical study looking at treating clusters with psilocybin. It took 15 years of dedication by a lot of people but we finally reached our initial goal.
An ironic part of the story is that we had always been told that the government would never let us do this study and they would block us at every turn. It turns out that the study is being done at a Veterans Administration research hospital. This is what happens when you won’t take no for an answer. Not only are they allowing us to conduct the study, they are supplying the facility. This study, in partnership with Yale University and with the help of additional funding, is history making. With Dr. Emmanuelle Schindler as the principle investigator, the first person in history was given FDA approved and legally permissible psilocybin to treat cluster headaches in the USA. Truly, patient number 1.
Additional updates follow.
Sponsors
We had 11 sponsors this year, our biggest contingent yet, and their contributions were many and very much appreciated. Not only were they all there to help educate the community on different treatments and treatment facilities, they were also there to let everyone know of all the opportunities available for working on advocacy, research and education. It was impressive to see so many people working for our community.
The sponsors financial contributions all go toward making the conference the special experience that it is for everyone. We are able to keep costs as low as possible for people to attend the conference. Registration fees do not cover anywhere near the costs per person, and our sponsors allowed us to cover these additional costs and also offer travel scholarships. We were able to help more people than we’ve ever been able to help in previous years to attend. Without our sponsors, 20-25 people would not have been able to otherwise attend the conference.
Our conference is a unique opportunity for our community to meet these companies and organizations and teach them who we are, what we need and help them understand how cluster headaches affect the families that deal with them. Unlike most conferences of this type, Clusterbusters keeps the sponsors in the meeting space along with the attendees so they can learn about clusters and more importantly the people that make up our community. We feel it is vitally important that when our sponsors go back to work after the conference, they can put a face on the people and families they are working to help. The Clusterbusters community is not sitting back and waiting for help from others. We are a vital part of the process and involved from the beginning.
Opportunities to help our community
We had two separate areas at the conference where people could participate in genetic research for cluster headaches. Dr. Shapiro and his crew were collecting blood samples and DNA for their genetic study and many people took part. Dr. Burish was also collecting DNA data and information.
This was an exciting opportunity for people to take part in important clinical research while at the conference. Thank you to everyone that took this opportunity to move this research forward. Hopefully in the not-to-distant future, generations of people will no longer have to worry about cluster headaches. There will be a cure and it is research such as this that will produce that cure. Pieces of the puzzle were put together at our conference and each year the community fits together more of the most difficult pieces.
Affiliations
I was very happy to be able to announce some of our new partners that we are working with to improve and fulfil our missions of advocacy, education, awareness and research. We are building a team and making Clusterbusters and entire the cluster headache community a vital part of improving the lives of everyone suffering with headache disorders. These affiliations make our voice louder, opens up more doors and increases the size of our footprint. They broaden our reach into the medical community and help us teach the general population about cluster headaches. Our room full of cluster advocates is an impressive sight and everyone there is doing great work for the community. We are finding new ways to educate the medical community as well as other organizations that can help the cluster community. We are making sure that our community is taking an active role in all aspects of the health care system and making a difference.
The current list of our affiliations is as follow:
AHDA – Alliance for Headache Disorders Advocacy
AHMA – American Headache & Migraine Association
HMPF – The Headache and Migraine Policy Forum
AFPA – Alliance for Patient Access
CHAMP – Coalition for Headache and Migraine Patients
NORD – National Organization for Rare Diseases
HCNE – Headache Cooperative of New England
US Pain Foundation
NHF – National Headache Foundation
Migraine World Summit
Patients Rising
M4M – Miles for Migraine
AHS – American Headache Society
RPV – Rare Patient Voice
Speaker Presentations
The following list of speakers filled out two full days of presentations that covered new treatments, new research, caregiver stories, advocacy and education events. Presentations were given by the following list of doctors, advocates and experts in various fields.
Dr. Brian McGeeney
Mr. Hans-Joerg Tangermann
Mr. Bill Mingus
Ms. Ashley Hattle
Ms. Katie Golden
Dr. Robert Shapiro
Dr. Larry Schor
Dr. Alexander Feoktistov
Mrs. Erika McDermott
Mr. Dan Duhart
Dr. Mark Burish
Dr. Emmanuelle Schindler
Mr. Kevin Lenaburg
Detailed reports of the presentations will follow soon. We will also be releasing videos of many of the presentations shortly.
In addition to the presentations there were many other things going on throughout the weekend. We had two focus groups, “Safe Room” sessions for both sufferers and caregivers, 02 demonstrations, raffles and auctions, discussion and Q & A panels, scientific poster presentations, book signings and even a magician.
Awards
Beginning a few years ago, Clusterbusters started giving out special awards to people or organizations that make a major contribution in advancing our mission and improving the lives of the people in our community. It is never an easy decision making our choices for the awards as there are a lot of good people doing great work. This year’s award recipients were:
Excellence in Research 2017
Dr. Mark Burish
Mark is currently assistant professor of neurosurgery at UT Houston where he performs research on cluster headache. He also treats patients with a variety of pain and headache conditions. During our conference Mark gave his presentation on a Circadian Study he is undertaking.
Mark is also running a study collecting genetic data on cluster headache patients. This will be an important step toward eventually finding genetically based treatments and a cure in the future. It is a huge step forward for everyone in our community in that we now have incredibly dedicated people working on laying the groundwork to find a cure and not just more treatments for the symptoms we experience.
Mark has become an important voice for us within the medical community specializing in headache disorders. Mark’s work makes sure that cluster headaches are a constant topic of discussion during the professional conferences as well as in the research labs. Thank you Mark.
Excellence in Education 2017
Ms. Ashley Hattle
Ashley started a support group for cluster headaches in Denver in early 2016 which meets every other month. The group is supported by Clusterbusters as a regional support group. Her Denver group has grown from three members to more than 15. She organized the first ever 5K to raise awareness and funding for cluster headaches on June 17, 2017. More than 25 people ran the race and the group was able to raise several thousand dollars for research. All the money raised by Ashley through this event will be used for the psilocybin research project going on at Yale and the Veterans Administration.
Ashley’s Denver group is involved in educating the public and the local Denver medical establishment regarding cluster headaches. Her fundraiser gained a great deal of print and radio airtime educating a wide audience on cluster headaches.
Ashley recently had her book on cluster headaches published and it is receiving great reviews. It is a wonderful teaching tool for patients, caregivers and the general public. Thank you Ashley.
Excellence in Awareness 2017
Ms. Shirley Kessel
Shirley is the President of Miles for Migraine, a non-profit organization that holds fundraising walks/runs in cities across the US with all funds used for research, education and advocacy work for people with headache disorders. They also host educational conferences in these cities as part of the events. They are able to generate a great deal of public awareness and publicity for their events. Miles for Migraine is very much involved in helping organize, support and fund many of the advocacy and education events in which Clusterbusters also participates. Clusterbusters has partnered with Miles for Migraine and will be working with them at their events. Every dollar raised by those people participating in these events for the benefit of cluster headaches, will go directly to Clusterbusters and will be used for our research and advocacy projects.
Working with Shirley and Miles for Migraine, Clusterbusters will be setting up informational and educational booths which greatly increases our outreach to the general public and the medical community. Thank you Shirley.
Excellence in Advocacy
Dr. William Young & The Alliance for Headache Disorders Advocacy
Dr. Young, the current President of the AHDA accepted this award on behalf of the Alliance (AHDA)
Clusterbusters has been a member of and working with the AHDA for seven years. Although the big event is Headache on the Hill which takes place once a year in Washington DC, this work continues throughout the year. One of the most important issues that the AHDA works on is trying to get Medicare and Medicaid to cover the costs of 02 treatment for cluster patients.
The AHDA has had specific legislation passed in congress that helps all people with headache disorders. They have also been able to greatly increase the levels of research funding in several government agencies. Their advocacy work also raises awareness and educates people in positions that can help us.
One of the biggest benefits of Clusterbusters working with the AHDA is the Headache on the Hill event that allows us to bring our cluster advocates together and also train new advocates. HOH is an event that empowers all that attend and allows us to tell our stories and to voice our grievances.
Those of you that join us in DC this coming February will be able to see firsthand the importance of our affiliation with the AHDA. Thank you, Dr. Young.
Lastly, I would like to thank everyone that helped make this conference a success. It takes a lot of work by a lot of people over an 11-month long period to pull it all together and to be prepared for all of the adjustments that take place during the weekend.
I’d like to thank my entire family for all their help and support, my fellow board members Eileen Brewer, Dan Bemowski and Kim Robbins. Eileen gets a special thank you as the event coordinator. Also, none of this would be possible without our volunteers. Thanks go out to Steve & Heather Keschinger, Dick & Bettye Wilson, Mac DuBose, Ashley Hattle, Andrew Cleminshaw, Mark Massulo, Ruthie Harper, Lisa Mingus, and April M.
Thank you also to everyone that donated items to the raffles and auction. We were able to raise a record amount of money with these very generous donations and these funds will go directly toward next year’s conference scholarships.
