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.
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.
Bob’s Big Pocket Guide to Cluster Headache Treatments
If you think you’ve tried everything and there are no new options, you’re wrong.
There are many different options available today. Some of which you may have tried and others that are new. There is more research going on right now for cluster headaches than any time in history. Some brought to us by medical science, some still in the research stage that you can participate in, some that have been developed by what is known as “citizen science” (The cluster headache patient community itself) and some being developed by medical device manufacturers. New options, some coming out of labs, some from nature, some from medical engineers.
The following is a list of options you may want to consider, in no particular order.
Keeping up to date
Research & Clinical Studies
I would suggest signing up for our patient registry so you will get all the latest news and info on upcoming clinical studies.
As announced at our conference in September 2015, we have several clinical studies in the works. Some of which will most likely be asking for study participants within the next 9 to 18 months.
These studies involve genetics, psilocybin, implanted devices and a couple others including one involving the psychological burden of cluster headaches. We also will keep everyone up to date on the other studies that we are working closely with the device, or research labs.
Anyone wishing to participate in these studies should be registered in our Patient Registry. In some of the studies, all participants will be invited strictly from those that are on our registry.
Some of these clinical trials will have study sites outside the United States as well as within the US. This is an international registry and we are looking for people from every country to sign up. A couple of these studies in particular will be looking specifically for people living in the UK, Germany and Canada. Please share this information with anyone you may know residing in these countries.
To register, please go to this link: http://tinyurl.com/n9ou73a 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: http://tinyurl.com/n9ou73a This registry is different and separate from our mailing list that you may already have joined. Please take this extra step with us in our research and advocacy work in cluster headaches.
If the above link is broken, go here: http://survey.constantcontact.com/survey/a07e97nw2gdhuaj6cau/start
This study will not help with your current cluster headache situation, but may very well help with everyone’s situation in the future. Please consider joining in if you have a close relative that also suffers from clusters and both are willing to participate. We have started this genetic study and are working with a leading researcher from the U. of Vermont and McGill University in Montreal with one of the best geneticists in the world.
Signing up for our patient registry will start the process of joining this study if you qualify.
Psilocybin Study We will also be starting a psilocybin study at Yale University along with the VA and hope to start accepting patients in 2016.
Again, everyone on the registry will be notified when this study opens for enrollment.
Eli Lilly There is one study that is currently accepting patients and we are working with Eli Lilly on this and it’s very exciting if it turns out to be as safe and effective as we all believe it to be.
I would also suggest seeing if you can get pre approved for the Eli Lilly study. I don’t know if there is a site close enough for you but they can let you know if one is open or if one will open in the future. They keep adding new sites in the US and all over Europe.
This is the link for the Lilly study if you are interested.
Please visit the following site for more details:
If you are afraid of just getting the placebo, rest assured that you will be guaranteed the active medication if you complete the process.
To get to the questionnaire and see if you can take part, you should go here:
This study is enrolling now. Get started here.
BOL-148: Research, Development This substance is an analog of LSD and has been around many years. The early study done by Clusterbusters showed extremely impressive results. Further study and development has long been delayed due to the usual drug development issues and not because of its efficacy. Keep your eye on it as we still believe it will be further studied and eventually developed for use.
The ATI device is commercially available in Germany, Austria, Switzerland, Sweden and Denmark. There are trials about to open in the UK, the Netherlands and Spain.
The NHF just released a news story on SPG stimulation and chronic cluster headache last week and here is the link: http://www.headaches.org/2015/12/08/cluster-headache-study-seeks-participants. I thought you might find this interesting.
Also here is a YouTube video on Dr. Papay at the Cleveland Clinic who developed the approach to implanting the device.
Currently Available Treatments
If you haven’t tried it with the proper mask, at a flow of at least 15LPM, and stayed on it until the cluster ended, then you really haven’t given it a fair shot.
If 15LPM doesn’t do it for you, you can try a 25LPM regulator or a demand valve that allows you to breath as deeply and as quickly as possible without emptying the bag. If you are using a mask that has holes in it, tape them off. Do yourself a favor and order a cluster mask asap.
You can order the best available mask here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
Besides the mask you need a regulator that will go to at least 15LPM if not a 25LPM regulator. Your doc can and should write a script for a 15LPM regulator and your 02 supplier should be able to supply one to you for any size tank they send you.
If not both can be found on Ebay.
A lot of 02 info can be found on our website. www.clusterbusters.org
Click on the oxygen tab in the drop down menus.
Also, although in 2015-16 most people are finding best results using 15LPM as a minimum and many others now using 25LPM, the following abstract shows what people were using in 2008. Something you can print out and take to your doctor. If they are still prescribing based upon 1960 recommendations, they should at least catch up to 2008/2009.
If you are in the UK, sorting out the oxygen issues with NHS is best done by contacting OUCH UK first.
The three main psychedelic treatments are unique in their mode of action. They are not an abortive or preventive in any of the usual sense. They are not used to abort an attack like the triptans and they are not taken every day like normal preventives. They can sometimes prevent a cycle from starting if taken early enough. They can abort an entire cycle and not just an attack. Yes they can abort an attack or low doses can end a “shadow” but these treatments are not used to replace your present abortives. When used, the object is to treat “the cycle” and not just an attack. The doses that are used are much less than what is usually taken as a recreational dose. They are taken once every 5 days and not daily.
Episodics have been known to completely break a cycle with just a few doses. Chronics usually take more doses and start spreading out the time between doses. Although starting off taken at 5 day intervals, you do not take them every 5 days for ever. The object is to use as few doses as possible, at the lowest dose that works, and work to extend the time between doses until the cycle has broken.
Most of these treatments are all illegal or restricted in some way, depending on where you live. Some things can be easily and legally ordered online.
The following link leads to all the general information on treating cluster headaches with psychedelics. Please click on all the embedded links also as there is a lot of information contained in these documents.
This paper should be read completely and has information that applies to using all the different psychedelic treatments. The most important pages to read are those that explain the warnings about additional contraindicated conditions you may have and medications you may be taking.
Contrary to what you may have heard or are worried about, there is absolutely nothing illegal or troublesome about this document or the information contained within it. As a matter of fact, this 68 page document is copyrighted in the United States and you can find a copy of it to read in the Library of Congress if you ever visit there. You may print a copy for your personal use but it’s use and or publication for any other use must be granted in writing from Clusterbusters Inc.
The first and most often used psychedelic treatment is with psilocybin which is the hallucinogenic substance found in “magic mushrooms”.
These have been used successfully by many people (thousands) for many years.
Most people grow their own which is fairly easy and can be done very discreetly. There are many videos online that will teach you the techniques. You can order the spores (seeds) online and the rest of the supplies can be purchased at garden shops or places like Home Depot.
The type of mushroom spores that are used are called Psilocybe Cubensis. There are many varieties but they are all very similar in the amounts of psilocybin they will contain.
Consider the possibility of investing $100.00 and you can be set up to grow your own medication for the rest of your life. Your pharmacist will be sending you Birthday cards asking where you’ve been all this time.
Ralphsters Spores has been helping people with clusters for many years. You can order spores from their site at:
Premium Spores is another source. Their privacy and security is excellent. They do not retain any records or credit card info. They also take visa prepaid cards. Here is their link: http://premiumspores.com/ Another one for supplies is Midwest Grow Kits. Their system is automated and it comes with a detailed how to guide. Another plus is they will ship to FedEx office locations for pickup. Here is their link: http://www.midwestgrowkits.com/
You can not get the spores and all the growing supplies and instructions all in one place, sorry.
Instructions: This is part 1 of a 5 part series and is the best online for growing your own mushrooms.
Once you get to this video just click on each follow up video by the same person.
Part one ; http://www.youtube.com/watch?v=ZHJQrsZFQdE
Additional Growing magic mushrooms video
2. LSD (lysergic acid diethylamide) There is no way of procuring this other than through illegal means. Information on the treatment is on the Clusterbusters pages and instructions are very similar to those of the psilocybin treatments. You just can’t grow your own.
It has been shown to have slightly better results than psilocybin and LSA. This may be due to the fact that it is a more pure chemical than using mushrooms or seeds, and that the effects can be felt for about twice as long so it is treating the cluster mechanism for twice as long as the other psychedelic treatments.
3. LSA (Seeds) (d-lysergic acid amide )
Ordering LSA seeds is easy online. There are several sites that can be trusted and have been helping people with clusters get good product. You don’t need to mention the seeds will be used to treat clusters and if you say you will be using them for that purpose, they can’t send them to you and will cancel the order. They are, for legal purposes, “not for human consumption”. They know what they will be used for. Ordering them is perfectly legal. If you’ve ever purchased Morning Glory seeds at a flower shop or from Amazon, you’ve had these seeds. You may have them growing in your garden.
One of the biggest warnings with the seeds that everyone needs to be aware of in the vascular constriction that comes along with these. Just like the warnings that come with prescription ergots, there are things everyone needs to be made aware and handle with care. Example: If you suffer from Reynaud’s syndrome, you should either stay away completely or be very careful with low doses. You should always consult with your doctor on adding any chemicals to your routine. They are the ones that will know your medical history and other issues you may have.
One place that has been around a long time is:
I Am Shamin : http://www.iamshaman.com/
You want to order Rivea Corymbosa seeds. http://www.iamshaman.com/eshop/10Expand.asp?ProductUID=1853&ProductCode=RVC-50
You can also use Hawaiian Baby Woodrose seeds but they are a little more difficult to process and also harder to adjust doses. I would suggest the Rivea Corymbosa seeds to start.
The fewer the seeds the better in that you will then consume fewer of the ergots that are in the husks. This is why Morning Glories are the least desired method as it would take hundreds of seeds for a dose. The HBWR though are so potent that the difference in one or two seeds can make a big difference in the hallucinogenic effects. That makes it much more difficult to adjust to the lowest effective dose.
This is a link on our website for more info on the use of these seeds:
People are using up to about 100 of the RC seeds for a dose for clusters. Its good to start with a small amount (10-20) just to make sure you don’t have any issues with being allergic to any of the additional chemicals found in the seeds. There are some other ergots in the seeds as noted above.
Instructions for dosing with seeds:
An effective dose is most usually 60-100 RC seeds.
Crush them the best you can and soak in water for 1-2 hours. Any longer does not help and at some point will start to degrade the LSA. After about 6 hours it will actually break down the LSA content.
You can also soak them in clear alcohol if you like. Vodka works and will extract the LSA slightly better than H2o. But water works fine.
You should add a dash of lemon juice to aid in the extraction. You can also dissolve a vitamin C tablet in the mix. You should strain the solution. You don’t need to ingest the husks.
You can mix the solution with something like cranberry juice or anything that has a strong taste because on its own, the solution does not taste very good.
All the same rules about dosing with mushrooms or LSD apply to using the seeds. This includes avoiding all the usual cluster meds. See the link about warnings and use of mushrooms.
This dosing works best if used once every 5 days until the cycle is broken. After a couple of doses you should try to expand the time between doses a few days each time. But don’t push this if you seem to be losing ground while waiting.
This is a fairly new treatment and many people have reported good results. It can be ordered online at the moment. There are different and changing laws regarding this chemical.
It does have hallucinogenic properties but just like the other psychedelic treatments, the dose is small enough that those effects are minimal for most people. Some can just take it and go to sleep avoiding all noticeable side effects. Unlike most of the other psychedelic treatments, 5-Meo-Dalt seems to be needed on a more regular basis and may not “break” your cycle in the usual sense. It is taken on an every 5 day treatment course but just like others in this class, this time period can often be expanded between doses. There is plenty of information online regarding how to obtain this chemical as well as the treatment procedure. The best and most complete paper on this subject can be found in the “files” section of the Cluster headaches facebook group. It’s also the best place to ask questions on this treatment. https://www.facebook.com/groups/17789934480/
The general treatment plan and the process involved is also based upon all the same information that is found in the Clusterbusters psychedelic treatment documents. The scientific paper on 5-meo-dalt can also be found on the CB website, here:
This is a vitamin and supplement regimen that has shown very good results for many people. All of the information can be found here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
There is quite a bit to learn and understand on this treatment and you should read all the information, not just a “Cliffs Notes” version. It’s not a difficult program to put together and will require some lab testing along the way but it can be very worth the time spent.
Most of the items on the list have been shown to be effective in treating clusters and other headache disorders on their own. Fish oil, magnesium, B vitamins etc, all have scientific data showing efficacy to some extent. Putting them all together and adding vitamin D has been more effective than any one alone. B. Kudzu Root This crazy plant that will grow across a roadway overnight has been used to treat headaches for centuries. Details can be found on our website. It’s a supplement that can be purchased online or at your local health food shop. The scientific research which was carried out by Clusterbusters and Dr. Andrew Sewell can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2008.01268.x/full
Information can be found on clusterbusters.org
1. Energy Drinks
These can be used to abort an attack if used quick enough and work pretty well with “shadows” The combination of caffeine and taurine seem to be the active ingredients that help. There are many options out there and all have varying amounts of these chemicals. Find one that works best for you with the least amount of side effects. Don’t over use them, but carrying one around with you can be helpful in getting through the day.
2. Ginger Tea
Again another natural herb that has long been used to treat many things over the years but has been replaced by prescription medications that oftentimes are less effective than what nature has provided. Ginger tea can be very relaxing and not just psychologically.
You also need to remember, that just because it is natural, (as with all the same suggestions here) that does not mean there can be issues and side effects and contraindications. Be sure to read the warnings found on the CB pages.3.
3. Skullcap Tea
This one is about the best one you can use if you are looking to remove some of the anxiety that you may have while taking other psychedelic treatments. It can be ordered online. If you want to try getting off of, or before getting onto, Xanax or Valium or something similarly strong and addictive, you may want to give this a try before going down that road.
Melatonin is a natural hormone that your body produces. Its levels seem to drop off in cluster patients and it helps regulate sleep among other things. There have been
some studies of its efficacy for clusters and it does help a lot of people get some sleep and eliminate some of the nocturnal attacks. Its only available with a prescription in the UK but is over the counter in the US. It can leave a person a big groggy if you wake up in the middle of the night and have to head for your 02 tank so be careful. The same can happen with some waking up in the morning. It can give similar effects as other sleeping pills. Some people have good results with as little as 3-5 mg at bedtime but others go all the way up to 20mg. Take it an hour before bedtime so that its in your system when you hit that first REM sleep.
Magnesium has also gone though a few cluster headache studies and has shown some good results. Its often used in an IV cocktail to treat both clusters and migraines in ER’s. It is taken at a dose of 400mg daily and I would suggest starting it a month or so before your regularly scheduled cluster cycle is due to start for you episodics. If you are going to stay on it for an extended period of time (if its helping) then you should also add an equal amount of calcium to your diet. Magnesium will deplete your calcium stores. This is also something you may want to consider adding to your diet if you are using verapamil as it can help with the constipation that verapamil provides.
Some miscellaneous tips & notes on conventional prescription medications.
When discussing any medications, whether they are prescription, over the counter or natural remedies, it is important to remember that old adage we’ve all heard before, “everyone is different.” Some people have much more severe cluster cycles and attacks than others. Just as some of our attacks are 10s and some are 2s, some people have cycles that are 2s and some have cycles that are 10s. One thing no one should ever feel obliged to do is either justify their pain levels or minimize the suffering they endure. No comparing is allowed. You have what you have and others have what THEY have. Some people are able to treat their cycles with low doses of medications and others need much higher doses before getting to a therapeutic level. This does not seem to have any correlation with the length or severity of their cycle. Some people can stop a cycle that that is very severe with a low dose of a preventive. Others have much less severe cycles but need very high doses of anything to get any relief.
1. Imitrex and the other triptans
Personally I am not a fan of Imitrex. It’s a bit like having a relative you can’t stand but is the only one that will watch your dog for a week while you go on vacation. Yes, it is effective and there is no doubt that it has saved many lives over the years. In the throws of an attack and having an injection sitting there offering relief, it’s difficult to leave unused.
On the other hand, as it has been proven through studies that it can make cycles last longer and add to the frequency and intensity of attacks.
But if that is your choice of abortives, there are things that can make things a little better and at the same time a little safer.
Standard injections of Imitrex work the best for cluster headaches. The pills are about useless for aborting an attack as they take too long to get into your system. If you are going to use these injections, the standard dose in the injector is 6mg. It has been found that 2mg of the injections are enough to abort a cluster attack. So you are able to actually treat three times as many attacks with however many injections you are prescribed or your insurance will cover.
There are two ways around this. One is to bastardize the injector and use a Q-tip as a plunger and just inject 1/3 of the liquid at a time. There are instructions for this on You Tube as well as more detailed info on the cluster site: clusterheadaches dot com.
The other way is to ask your doctor to prescribe vials of Imitrex. You can get a small vial and empty syringes and you can measure out 2mg doses that way.
For every 1 person that these help for any extended period of time, there are 99 that range from no relief to devastating results. They do not work fast enough to treat an attack. Taking them on a round-the-clock basis provides very little relief and will most likely end up as first building a tolerance to them and ending up addicted. They will also block many other treatments that you may want to try along the way. They can also lead to rebound headaches that make everything worse in the long run. Not only can they trigger more cluster attacks, they may end up adding Medication Overuse Headaches, so in between your clusters, you have another headache disorder to deal with. You can forget any clear thinking in between your cluster attacks and can lead to a spiraling downward. If you get referred to a pain management clinic, they will try to treat your clusters with pain killers of some sort and this rarely helps, even in the short term. Please be careful. Nerve blocks that may be offered may contain steroids but not all do. These can possibly help if done properly and are usually most effective when used in conjunction with other therapies. The blocks will wear off. Specialists are getting better at these blocks as time goes on. Find one that has experience blocking for clusters.
DHE – 45
Dihydroergotamine is in a group of drugs called ergot alkaloids. It works by narrowing the blood vessels around the brain and affects blood flow patterns that are associated with certain types of headaches. Ergots have long been used to treat headaches, including clusters. It comes in three forms. You can get prescribed injections that come in a vial and then you draw the solution into syringes. They aren’t prefilled like Imitrex. It also is available in a nasal spray form and is called Migranal. The nice thing about these products is that they usually provide longer lasting relief than the triptans. There are side effects that need to be discussed with your doctor prior to using. The bad thing about them is that for some reason, even though they’ve been around for many years, the prices if these have skyrocketed over the last couple of years. (See additional info further down in this document)
Thirdly, some headache clinics and specialists offer an in patient IV treatment with DHE. This is often suggested to break a particularly long or bad cycle. It changes a bit from clinic to clinic but is most often a 3 to 5 day hospital stay. It often will break the cycle while you are on the IV and sometimes a little extended relief. In almost every case, the cycle will return although there is a chance it can end an episodic cycle early.
You need a prescription for this but it is pretty cheap and can help sometimes. For clusters you need a 4% solution and it is applied using an eyedropper. The instructions for its use can be found on our website and it is very important that it is done properly or it won’t work. It is a way to apply a treatment similar to an SPG block that you can administer by yourself.
It’s an abortive in the form of an anesthesia that can sometimes help you get some sleep. Lidocaine sprays do not help. Don’t waste your time. The trick is to take a dropper full, lay down on your back, on your bed, with your head over the edge, tilted backward and downward, head tilted about 30 degrees toward the side of your cluster, and insert the liquid. You want to bath the nerve ganglion located in the backside of your sinus cavity with the liquid.
Verapamil. This is one of the medications that “can” produce fewer side effects but even this one can cause problems. You need to watch your blood pressure. Some people can get some relief at lower doses like 120mg or 240mg per day. Others have been known to require up to 1200mg for some relief. But the higher the dose the worse the side effects usually. Some people are able to tolerate a therapeutic dose without bad side effects but others have bad issues. One of the worst to deal with on a daily basis can be the constipation that comes with this medication. If you’re going to be on it long term, you’ll most likely need to find a way to fight that.
There are also a couple of serious heart complications that can arise and EKG tresting is essential in keeping ahead of any serious health issues. If your doctor isn’t ordering regular EKG’s, demand them or demand to get off this med. http://www.reuters.com/article/us-verapamil-headaches-idUSSCH37552320070813
Prednisone & Steroids
These are normally prescribed as interim treatments to try to cool off a cycle while other medications can be built up in your system to a therapeutic level. Sometimes for episodics a short burst can hold down the attacks until the cycle comes to its natural end. I understand the desperation people can feel at the height of a brutal cycle and how these types of medications can help get you through a particularly bad time in your life. The doses used to treat clusters are very high on the scale of dose amounts for such powerful drugs. People that require them on an ongoing basis for such things as chronic respiratory disease may be prescribed 5mg per day. Cluster people are usually starting at 60mg or 80mg. Side effects at these doses can be extreme. These aren’t limited to physical effects. You may find yourself in fits of rage. You may find yourself not only wanting to eat everything in the refrigerator, but you may want to actually eat the fridge itself. Long term effects if you use these treatments to many times can include severe joint issues due to Avascular Necrosis (bone death). Your soft tissue organs are also not safe long term. Never stop these treatments cold turkey. You must slowly lower the dose as you end the prescription. If you’ve been on it a long time and at high doses, you need to speak with your doctor to see if you should get an ACTH injection to get your body producing cortisol, its natural version of prednisone, again. Your body will shut down producing natural chemicals when you introduce the synthetic versions, in it’s own attempt to keep levels safe and stable.
Links to additional information on the above topics as well as additional research and information can be found here on the Clusterbusters website. https://clusterbusters.org/links-tools/
Tidbits & Big bits
Going to the dentist?
If you’re going to have dental work done, and need a shot of Novocain, ask for the injection without the Epi. Epinephrine can induce a cluster. It’s also a great idea to teach your dentist a bit about clusters and how they are diagnosed. 40% of you had dental procedures done hoping it would help your headaches/toothaches before you found out they were clusters. Teach your dentist for the next person. Toothaches do not happen every night at 3am and last just 45 minutes, EVERY NIGHT.
Don’t be afraid to travel.
If your insurance company covers 02, your supplier can most likely have 02 waiting for you at a hotel you are staying. Just call and ask for a rep that handles travel plans. They’ll work out a deal with a local supplier. Bring your mask and regulator. It’s true that air travel can trigger an attack. I’ve heard it said that if you take a capsule of mushrooms prior to leaving for the airport, it can help you avoid that problem.
Pain is inevitable; suffering is a state of mind and is optional.
One of our biggest complaints as cluster sufferers is all the things that they take from us. Jobs, relationships, important events etc.
A. Marriage & Relationships
50% or marriages end in divorce. 99.9% of those do not have clusters in their lives. When we complain that someone has left us because they weren’t strong enough or care enough to stay because of the clusters, this diminishes the wonderful people that stay regardless. Leaving is the normal response. Staying and supporting is the exceptional response.
B. Jobs & Workplace
Everyone loses jobs. No one stays anywhere for 35 years anymore. It’s suggested to change jobs every three years if you want to make the most money and rise up in any field. Everyone has trouble holding a job because everyone has personal issues. Not only are there ways of making a living, especially in today’s cyber world, your goal should be to make a “life” not a living.
C. Vacations & Events
Please do not be afraid to make plans in fear of a possible attack. There are some things that you can do to alleviate some of that fear and be able to treat an attack IF it happens. More importantly what I have found and have heard over and over is that actually going to the event will prevent an attack that may have usually come at the scheduled time. Don’t let the “possibility” of an attack stop you from doing anything. If you stay at home, it was your fear that took away the event, not the clusters. Here is something to consider. Cluster used to be called “executive headaches” because people in high stress jobs (as if only executives have high stress jobs) would be fine during the week while at work and then when they headed home for the weekend and began to relax, the clusters would strike. This is caused by chemical changes in the body that are caused by stress and the release of that stress. You may sometimes cause a self inflicted wound that leaves you thinking that you did the right thing by not attending an event and then after not going, you get an attack, making you think you did the right thing by staying away. You have put yourself thru this stress/release cycle. Don’t stress about it in the first place and you won’t be building up all those stressor chemicals that will eventually release and cause an attack. You’re even better off stressing about it and still going and being a bit stressed while there. it’s when you stay home and relax and release that stress, your couch time will not be pleasant.
D. PTSD & your mental health
A big part of understanding these issues is accepting the fact that cluster headaches very often cause severe PTSD symptoms. The fears we deal with are not something that we can easily get over. Just as we should never just expect a soldier coming home from war to “just get over it” we shouldn’t expect ourselves or those we support to “just get over it.” PTSD is PTSD. Reach out for help. Keep reaching out until you find that help. Surround yourself with supportive people. Society oftentimes teaches us to believe that it shows weakness to ask for help. It’s not a weakness, it’s a necessity.
Things that don’t work so don’t bother.
When I say they don’t work, here is my explanation. Some people may get short term relief and others may seem to get longer term results. Most or all of this can be easily attributed to a few things. There is a placebo effect, even with cluster headaches. Yes it may seem hard to believe but it is true and has been proven through numerous studies. There is also the confusion caused by the very nature of cluster headaches. Episodics go in and out of cycle, making it difficult sometimes to determine if the relief is from a medication or from a natural cessation of the cycle. With chronics, there are also high and low periods within the year. Most often caused more by seasonal changes than medication effectiveness. When people say that something was working and then stopped, this change is likely to have been caused by either the fact that the medication was never working and it was a natural change in your cycle, the placebo effect wore off, or the medication had thrown your system off its natural course for a short period of time and your brain found a way to get back on it’s malfunctioning course.
1. Inadequate Oxygen. Using a nose canula and a concentrator does not work. It won’t work to abort an attack and it won’t work if you’re thinking that if you hook yourself up and try to use it during the night to try to get sleep. The high flow oxygen treatment does not work by raising your blood/oxygen levels. Everyone’s is about 98% as it is unless you have another serious problem.
2. Daith Piercings.
You can pierce your ears or any other part of your body and you will not affect the cluster headaches in any way.
3. Massage Therapy
This is not going to help your clusters in any way and could trigger an attack.
What it can do is help release some of the tension in your shoulders and neck area and help you feel a little better. It’s also possible for that short time alone taking care of yourself to help you deal with the mental stress. You again have to be careful though about the stress reliever being a trigger. There seems to be a couple hundred different types of massage therapies. They will all have the same results. This includes Shiatsu, Reflexology, Reiki and Craniosacral therapy. If they help get you through the mental end of this condition, that’s fine. In my opinion, donating that hour of your time, working in a soup kitchen for the poor will help as much or more, and you’ll save a hundred dollars.
4. Acupuncture & Acupressure
Don’t, just don’t bother.
5. Biofeedback & meditation
Again these relaxation techniques may help with some of the stress involved in clusters but they may be a trigger more often than not. See massage therapy.
Don’t, just don’t bother.
Addendum 1 Additional comments on some common prescription medications used to treat cluster headaches.
The following opinions are just that, my opinions based upon collecting many reports of their effectiveness and side effects. Also my personal experience in many cases (I’ve tried over 70 of them).
Many of these medications are used in combination with others and it’s difficult sometimes to pinpoint what actually may be helping, if they are. One thing that seems common among typical cluster drug therapies is that if a single drug or combination is not working well enough, a new drug is added without removing anything from the treatment plan. It may be that an anti depressant, or anti convulsive is replaced by a different type. What happens if you are on a beta blocker and a calcium channel blocker and seem to be getting only a 20% relief in your cycle, your doctor may want to add an anti seizure med to the cocktail. Both patient and doctor don’t want to chance losing even that 20% relief and hope to build upon that by adding another type of medication. This is how people end up getting on 6 or 7 different medications at the same time and still getting minimal relief.
When considering the risk versus reward of relief versus side effects, you need to consider the following. If a medication treats your clusters and gives you 80% relief and there are only a couple of minimal side effects, then it’s easy to determine whether or not you want to continue on that drug regimen. But if you are on two or three or more medications and getting less than great results, its more difficult to make those risk/reward decisions. Take a good look at the total side effects you are experiencing and also the possible long term effects, and compare the totality of the effects to the relief that you are getting. It may cause you enough concern to ask your doctor about switching things up a little.
This one is in the early stages of testing. It has shown some signs of success for some people but it’s use needs to be monitored closely by the prescribing physician. There are some possible serious side effects if used improperly. If there is one important thing to remember about this drug, it is that it should be used “sparingly” and this can lead people with clusters down that slippery slope we often find ourselves. Clusters themselves don’t come upon us in a sparingly fashion and when we find something that works, it’s difficult not to use it as often as the attacks command.
Ketamine topical cream
This is available through compounding pharmacies and is usually rubbed into the area where the nerve ganglion is located on the back of the neck. Often described as the cluster lump.
Migranal (DHE) Spray
This is available as a generic and has been around for many years. It has become very expensive (as have many generics for some reason). There are also shortages of it from time to time. Because of the high prices and reimbursement schedules, some pharmacies may not carry it. It is an Ergot derivative so all the warnings that go with ergotamines should be followed. What is good about this versus the triptans is that this spray can work better than the triptan sprays and also, it can give you much longer pain free periods than the triptans. An Imitrex shot may only help one attack during the day and you may still have more attacks to get through that day. Its much more likely that if this helps you, it can give you 24 hours of relief. So if you’re used to having 6 attacks a day, it can eliminate all of them, unlike Imitrex.
General notes on psychedelic treatments.
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