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.
In 2002, Clusterbusters was formed to take a pro-active role in researching for a cure for cluster headaches and find new and improved treatments.
Eventually, 6 advocates traveled to Boston and met with the administration of Harvard Medical School and convinced them of the importance of this research and they agreed to undertake the first psychedelic research project at their institution in 40 years.
On Feb 9th, 2004, an agreement was signed to begin research at Harvard University, looking at using psilocybin as a viable treatment option providing results far better than anything currently available.
The first published results from this groundbreaking clinical study of this treatment appeared in the prestigious medical journal Neurology in June of 2006. This has been an incredibly long and often frustrating process that included the discovery of BOL-148, starts and stops of every fashion, thousands of people finding relief with various new options and an unending determination to push forward past every obstacle.
The growth of Clusterbusters into an active and successful advocacy group for the entire community, built with contributions from hundreds of people that refused to let the words “can’t”, or “no” stop them from helping others. Along the way we have added some incredibly dedicated advocates, we have lost one of our original research team members, Dr. Andrew Sewell, added extraordinary researchers and headache specialists to our team, overcome those that have tried to stop us and will continue to push forward. There are still doors to be knocked upon, barriers to be overcome and miles to go, but we will not be denied.
Yes, it has taken 14 years, and we have moved locations, but I am both proud and pleased to announce the following IRB approved release:
Adults with chronic cluster headache, age 21 – 65, needed for a research study investigating Psilocybin in the treatment of cluster headache.
ClusterBusters, a non-profit advocacy and education group, is participating in the recruitment of subjects for a pilot study investigating the safety and efficacy of psilocybin in cluster headache. This study is taking place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine.
Earn $100 per test day. Three test days total.
Call (203) 932-5711, ext. 4335
All calls are confidential
HIC # 1607018057, HSS # DD0063
Biological Studies Unit, VA Connecticut Healthcare System, West Haven Campus
A few details of explanation:
Congratulations and thank you to everyone that has worked so hard for all these years to make this happen.
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 simple 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. By joining our list you will be kept up to date on all the newest studies and research.
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 year’s conference.
Even if you can’t make the conference, we’d love to have everyone appear on the registry.