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 email@example.com 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.
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.
The American Headache Society (AHS) Symposium took place last month in Phoenix at the JW Marriott Desert Ridge Resort and Spa. Several of our Clusterbusters board members and President, Bob Wold, were in attendance along with one of our favorite neurologists, Dr. Brian McGeeney. There are several things we learned over the course of the four-day conference. The first notable impression we gained was the absence of Cluster Headache in both the syllabus and the minds of the physicians.
AHS did a wonderful job educating medical professionals on all aspects of Migraine including diagnosis, prevention, treatment, and emerging options for patients. The less common headache disorders, both primary and secondary, were mentioned, but the main focus of the symposium was Migraine, which makes our attendance more essential than ever.
We learned and accomplished many things that will hopefully help the cluster headache community, which include:
The CGRP (Calcitonin Gene-Related Peptide) antibody studies by Teva Pharmaceutical Industries and Eli Lily & Co. are perhaps the most promising trials for cluster headache patients right now—Aside from Dr. Schindler’s study on psilocybin at Yale University. CGRP is a natural-occurring protein in the body that is believed to attach to brain receptors and activate sensory neurons in your trigeminal nerve, which instigates the severe pain of a cluster headache attack.
The theory behind this emerging treatment is to inhibit or reduce the amount of CGRP released in the brain. The early Friday morning presentation involved a 3D representation of how the CGRP is released and attaches to neurons. There are four ongoing trials, two of which include cluster headaches, and three of which could be FDA-approved in 2018.
The clinical trials happening in many U.S. regions involve a monthly (typically three months but patients can opt to continue treatment) subcutaneous injection for the Eli Lily study or both a subcutaneous injection and IV infusion for the Teva study. They’re still actively looking for more cluster headache patients to participate. If you’re interested, you’ll need to complete several steps, such as:
Both episodic and chronic patients can participate, but the episodic process is slightly different. Learn more at https://clinicaltrials.gov/ct2/show/NCT02466334.
Most medications used to treat cluster headaches can be continued until conception but must be stopped during pregnancy. Some women are pain-free while others experience an increase in attacks or the start of an episodic cycle while pregnant. Aborting attacks with high-flow oxygen is one option, but sumatriptan, DHE, Topamax, prednisone, and other popular medications used for cluster headaches have to be discontinued to avoid birth defects, premature births, and miscarriages.
Luckily, there are some safe options available for women struggling with attacks during pregnancy. We learned during the AHS Symposium that the newly FDA-approved, non-invasive Vagus Nerve Stimulator (VNS) by gammaCore® and occipital nerve stimulation (ONS) could be used safely during pregnancy to treat attacks. The VNS is a handheld device (seen on the left) approved for episodic and chronic cluster headaches that can abort an attack in approximately 15 minutes. Studies show that both the VNS and ONS result in less acute medication use and less medication overuse.
We already know cluster headaches have a profound impact on our mental health such as the development of PTSD and depression. One of the presentations talked about the potential link between Borderline Personality Disorder (BPD) and head pain. There’s a cognitive-behavioral model of panic disorder that makes one wonder which came first. Many of us have been there—You experience a stressor that you associate with a cluster headache attack, fear of the attack develops, you take medication to “prevent” said attack when there may not have been one coming.
A 2009 study focused on the psychiatric link in patients with chronic daily headache and migraine. However, in theory, cluster headaches can be looped in with the results. They found that individuals with Migraine are 2.2-4 times more likely to suffer from depression and may have an increased suicide risk. Medications can help the mental health aspect, but it’s difficult to treat both head pain and depression effectively. Given that cluster headaches are nicknamed “Suicide Headaches” because the rate of suicide attempts is 20 times the national average, this makes perfect sense to us. A 2012 study on depression and anxiety in cluster headache patients found this link was especially powerful.
A Friday afternoon speech at the AHS Symposium focused on pediatric patients with migraines, and it was difficult to get one of the speakers even to admit that children also get cluster headaches (Thanks, Dr. McGeeney!). There are so many awful side effects associated with common off-label medications used for cluster headaches including Topamax that it’s hard to determine what’s actually safe for kids with cluster headaches and migraines to use. Surprisingly, the recommended preventative for kids as young as six with Migraine was Topamax.
Experts agree that the average age of onset of Cluster Headache is between ages 20 and 40, but 35 percent of patients report having their first attack before the age of 20, which often results in a delayed diagnosis or misdiagnosis. We know of several children as young as eight who have cluster headaches and little to no treatment options. This is one of Clusterbusters goals right now—To develop a thorough resource for parents of young children with cluster headaches to learn more about the condition, what treatments may be viable and most importantly, safe, so the child can continue to grow and learn.
Your circadian rhythms, REM sleep, and melatonin levels play an interesting role in cluster headaches. You likely know that nighttime attacks are one of the major indicators of CH, and the worst attacks to treat because you wake up with a full-blown K10. All of this makes it hard to maintain good “sleep hygiene.” A set routine is easier said than done, but it’s believed that maintaining a consistent sleep schedule may help turn chronic migraines (again, no mention of Cluster Headache) into episodic. However, the opposite may happen if you don’t stick to a strict sleep schedule.
During the only main-stage presentation on Trigeminal Autonomic Cephalalgias (Cluster Headache, SUNCT, and Hemicrania Continua) an audience member asked about the Vitamin D3 Regimen and proper oxygen use and was all but met with blank stares. That drove the point home for us that we need to find a way to educate medical professionals (primary physicians, specialists, emergency responders, etc.) on the correct way to approach treatment for a cluster headache patient.
The absolute first step a medical professional should take following a cluster headache diagnosis is to write a script for 12-15lpm of high-flow oxygen with a nonrebreather mask. Sadly, many physicians are under the misconception that all patients will develop oxygen toxicity at this rate, but unless there’s a pre-existing lung issue, this is not a problem. We’ve known since the 1930s that oxygen works for cluster headaches, and it’s honestly astonishing that we’re still fighting our doctors and insurance companies to provide it. Essentially, our work is far from done.
Other aspects that piqued our interest involved the booths in the exhibit hall. The folks from Eli Lily & Co., electroCore, LLC, Teva, Biohaven Pharmaceuticals, Allergan, and many others lined the walls. We were met with many questions about cluster headaches and how they differ from migraines as we made our way down the circular path.
Biohaven Pharmaceuticals was particularly intriguing. Not only did they have this awesome 3D printer making headphone cases, but their product is said to work well for migraines, and maybe cluster headaches someday soon. Biohaven has developed a CGRP receptor antagonist proposal that has two main goals: acute migraine treatment and prevention of episodic and chronic migraine. Currently, it comes in pill form.
Aside from the cool booths (Eli Lily had a Lego brain approximately two feet high), we learned or were at least reminded that it’s important to be skeptical. Cluster headaches are often ignored even though it’s a primary headache disorder because of the low number of patients and misinformation about women with CH. Additionally, neuromodulation was discussed at length during one presentation and is considered the best mode of action when all else fails to work.
Our board members and President were fortunate enough to be invited to the special interest meeting on the Trigeminal Autonomic Cephalalgias. We met more than a dozen medical professionals and neurologists who were fascinated by Cluster Headache and eager to learn what their patients need from them. This was the most exciting part of the AHS Symposium for us. This meeting changed the way many of them view cluster headaches. We hope to continue working with this group on improving the diagnosis rate and treatment for all cluster headache patients.
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
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
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.
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.
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
M4M – Miles for Migraine
AHS – American Headache Society
RPV – Rare Patient Voice
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.
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 Mazac.
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.