For nearly 20 years, Bob Wold has managed Clusterbusters as a volunteer. He takes our desperate calls in the middle of the night, answers emails, travels, organizes, and sacrifices time with his family in order to ensure that every person living with cluster headache has the best life possible. His efforts in education, driving research, and support are unprecedented and unparalleled. In addition, Bob has held a regular job to help support his family. He does all of this, likely working 80 or more hours a week in total, with so much kindness and without complaint. He also lives with the same crippling disease that we are fighting to eradicate.
We are living in a special time in the headache community. More attention is being given to research and to our disease. We have received tremendous support from the research community and even more amazing support from our own patient community. It is time for Clusterbusters to make a change. We have a growth opportunity, but we need to focus.
Consequently, Clusterbusters is proud to announce that we have asked for and received Bob’s resignation from our board of directors. He is no longer our president. Instead, we have hired him as our Executive Director. He will now work under the direction of the Board of Directors full time to carry out the mission and vision of Clusterbusters that he developed in the early part of the 2000s.
As the position of President of the Board has been vacated, I have been asked to serve as the President and I have accepted this position. I am so proud to be able to continue to serve this community that has given me so much. Thank you all for your support.
As you may know, we have added Ainslie Course to our Board of Directors. We are excited to include her as this will help us to grow and expand our reach. Thank you, Ainslie, for adding your talents and light to our community.
We will be continuing to grow our amazing organization. We are so proud of Bob Wold, those who came before us, and all of the accomplishments of Clusterbusters, and we are looking forward to helping to shape a better future for everyone living with cluster headache.
Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites.
Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil.
I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. 😉
This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies
Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work.
Thank you for the work, the support, and the inspiration to keep moving forward.
Journal of Psychoactive Drugs, 47 (5), 372–381, 2015
Copyright © Taylor & Francis Group, LLC
ISSN: 0279-1072 print / 2159-9777 online
Indoleamine Hallucinogens in Cluster
Headache: Results of the Clusterbusters Medication Use Survey
Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d
Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache.
Participants were recruited from cluster headache websites and headache clinics. The final analysis included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted.
Conventional abortive and preventative medications were identified and their efficacies agreed with those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide,
and lysergic acid amide, were comparable to or more efficacious than most conventional medications.
These agents were also perceived to shorten/abort a cluster period and bring chronic cluster headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings.
The full article can be accessed here: http://www.tandfonline.com/…/…/10.1080/02791072.2015.1107664
Clusterbusters is very happy and excited to announce the opening of a very important research study into the genetics of cluster headache.
This study is currently recruiting people for possible participation.
This study is a collaboration between Clusterbusters, Dr. Robert Shapiro, University of Vermont Medical Center, Dr. Guy Rouleau and McGill University.
We are looking for individuals who have received a diagnosis of CH from a doctor, who have at least one immediate family member who also has received a diagnosis of CH from a doctor to participate in the study together. Two (or more) family members must agree to participate.
We are currently contacting individuals that have joined our patient registry or completed a previous Clusterbuster’s survey and have indicated they may be good candidates through their answers and information.
We will be contacting people in smaller groups so it may be some time before we get to you but we will be getting to everyone that is on our patient registry that meets the necessary criteria.
Should you decide you’d like more information, you will be given contact information.
You do not necessarily need to reside in the USA to be a possible participant.
If you wish to be contacted to see if you are eligible to participate, you will need to first be a member of our patient registry.
If you have not already entered your name and information into our registry, you may do so by visiting the following site:
NEW FORUMS ARE UP!
I want to start off by saying that Clusterbusters is of immense personal and professional importance to me, and that I truly want nothing more than to see it continue to succeed and grow as an organization. While the existing message board has been an amazing gift (and continues to be!), it is time for us to build and grow from our home at Clusterbusters.org.
With that said, I’ve been working behind the scenes with the Admins and Mods on the new forums for the community! This will be fully hosted from clusterbusters.org and is powered by Invision Power Board (https://www.invisionpower.com/)
They were very generous and provided us discounted migration services and support. This will allow us to better update, maintain, and secure the community into the future.
Rescheduled Migration Date: Saturday, August 1st, 2015
1) On the scheduled migration date, we will put the existing forums into a “Maintenance Mode”, which will make them inaccessible.
2) We will be working as quickly as possible with Invision behind the scenes to bring up the new forums: which will have all of the same usernames, passwords, and posts.
3) Once ready, the new forums will be made live at: http://clusterbusters.org/forums
You can save this bookmark for now, but the site will be inaccessible until it is ready!
The navigation link on our home page will change from “Message Board” to “Forums”
4) Finally, we will setup a redirect from:
Thank you all for your patience and understanding.
Additional details on the chronic cluster headache study is available on clinicaltrials.gov (click here for ClinicalTrials.gov identifier NCT02438826). You will receive another communication from Clusterbusters in June when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study.
Clusterbusters has been informed by Eli Lilly and Company that additional details regarding their clinical study in patients with episodic cluster headache have now been posted on clinicaltrials.gov. (see below for website). Please note that investigator sites (doctor’s offices conducting the study) will continue to be added to clinicaltrials.gov as they become approved by ethics committees over the next few months. You will receive another communication from Clusterbusters (late April), when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study.
Additional details on the chronic cluster headache study will be available on clinicaltrials.gov in April. You will receive another communication from Clusterbusters in June when enrollment for this clinical study begins. At that time, if you are interested in participating in the study, you will have the option to complete a questionnaire to help determine whether you may qualify for the study.
Please visit the following site for more details:
A Study of LY2951742 in Participants With Episodic Cluster Headache
Please see the original post for reference: Breaking News: Cluster Headache Study
Clusterbusters is pleased to announce the dates and venue for the 2015 Conference.
Dates: Thursday September 17, 2015 to Sunday September 20, 2015
Location: The Hyatt Regency O’Hare 9300 Bryn Mawr Ave, Rosemont, IL 60018
This is one conference you will not want to miss! This conference offers an opportunity for understanding and camaraderie that attendees have greatly appreciated in the past. There will also be updates and reports on advocacy efforts, education, and the latest information on current research.
We are hoping to award as many scholarships as possible for the conference. We will consider the needs of everyone. We expect a large number of submissions and most likely will not be able to satisfy all requests:
Rooms and Rates:
We have arranged a block of rooms starting at $125 per night. Make your reservations online at:
You WILL want to make your reservations early.
For Online Conference Registration follow this link: ONLINE REGISTRATION
We have been able to keep the Registration Fee the same at $125 for attendees and $95 for spouse/companions.
Schedule of Events:
The 10th Annual Conference will start with Registration and the President’s Reception at 6pm on Thursday Sept 17, 2015.
The speakers and presentations will follow beginning at 9am on Friday and continue to Saturday at 5pm. Sunday is left open for socializing and final goodbyes.
We are still working on the agenda, a complete list of speakers, and more. These will be announced shortly.
A few of the speakers already confirmed are:
Dr. Robert Shapiro
Dr. Brian McGeeney
Dr. Emmanuelle Schindler
Dr. Joanna Kempner
Dr. Larry Schor
Dr. George Urban
Dr. Larry Robbins
A lot more details to come very soon.
Hope to see a lot of you in Chicago!
As some of you may know from our conference last year, Clusterbusters has been in close dialogue with Eli Lilly and Company regarding the following release. Among our priorities, has been to provide them with what we felt was important input from the patient community. We are very pleased to be involved in this and will be providing additional information to our membership as it becomes available.
Eli Lilly and Company has informed Clusterbusters that the company plans to start a research program for episodic and chronic cluster headache. Lilly is excited to start this program and work with Clusterbusters to actively help enroll patients. The company will provide more information, including the locations of participating study sites, to Clusterbusters and on the web at www.clinicaltrials.gov (expected in late March). Lilly expects the program to begin actively enrolling in late April. At this time, please do not make any changes to your current medical treatment or otherwise to try to qualify for this study.
Here’s some additional information about Lilly from the company’s website: Lilly is a global healthcare leader that unites caring with discovery to make life better for people around the world. We were founded more than a century ago by a man committed to creating high-quality medicines that meet real needs, and today we remain true to that mission in all our work. Across the globe, Lilly employees work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease, and give back to communities through philanthropy and volunteerism. To learn more about Lilly, please visit us at www.lilly.com and http://newsroom.lilly.com/social-channels
Nashville TN. Sept 18-21, 2014
Thursday September 18
As people from several countries and all over the USA began to arrive and settle in to Nashville, we all gathered together for the Presidents Reception on Thursday evening.
It’s called the Presidents reception but in all honesty it’s returning attendees that hold the reception. People that have met before and understand the magnitude of meeting a group of clusterheads for the first time. Many people know each other from past events like this and seeing old friends again resembles the reunions we often see on TV at airports. People coming home from overseas and reuniting with their families. Had TV cameras been there some of the reunions would now be trending on You Tube and Twitter.
Even more emotional for many is meeting new arrivals that have never met another cluster headache sufferer in person for the first time in their lifetime.
As an organizer things are certainly hectic on top of seeing old friends again myself but I am able to sit back a bit and people watch. It’s an incredible sight sometimes to see someone that obviously has felt isolated and alone for years, walk into a room that seems full of relatives that they didn’t knew existed. Imagine walking into a room and seeing 100 brothers and sisters that you never knew existed. That is happening all around the room and is something to marvel and this alone makes all the work putting these people together, all worth it.
One of the best parts of these gatherings is watching those that are returning for another conference actually seeking out the new people so that they can be a part of the experience of meeting a first timer. It is something that neither will forget no matter which side of the handshake/hug they are on.
Announcing the release of the new Clusterbusters Patient Registry!
Have you registered on the Clusterbusters “Patient Registry” yet?
Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation.
Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
People from all walks of life, all ages and every description, suffer from cluster headaches.
We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
Be a part of a better future for cluster headache patients and participate in our registry.
As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board.
Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at firstname.lastname@example.org and we will mail a written copy for completion and inclusion.
To participate, please go to this link:
Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference.
Even if you can’t make the conference, we’d love to have everyone here on the registry.
As many of you may have heard, last Thursday, June 6, 2019, was an historical day for our community. Emgality became the first ever FDA approved drug developed to prevent cluster headache. We couldn’t be more excited! In addition to having a new and much needed treatment for our disease, this news will offer some more awareness, which is always great. Clusterbusters hopes this will, in part, help to usher in a new era of awareness and advocacy for those living with cluster headache.
With this news has come many questions. Please follow this link or see below for more information on Emgality. As always, we are here to help and as we receive new information for Eli Lilly and Company we will pass this on to you.
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.
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.