One of the major issues our community has had to deal with over the years in getting proper treatment has been the difficulty many of us have in getting a proper and timely diagnosis. Things have been getting better but there are still too many people waiting years for a proper diagnosis.
We are happy to announce that Clusterbusters is working with Dr. Morris Maizels, a headache specialist, to validate an online headache diagnostic tool that will help individuals receive a correct diagnosis more quickly.
This tool is currently in its final development stages and we need your help in fine tuning it. We all know that there are some major symptoms that easily detect cluster headaches. There are symptoms that some people experience in addition to these that sometimes cloud the initial diagnosis. We need to identify these symptoms and your participation in the process is needed.
Information about the study can be found at: https://clusterbusters.org/current-studies/chat/
Please take a few minutes to complete the survey and if possible, participate in a brief telephone interview to review the output of the survey. We are looking for as many survey completions as possible. We are especially interested in individuals with a known or suspected diagnosis of cluster headache, with variants or unusual forms of cluster headache, or who were mis-diagnosed before receiving a correct diagnosis. Even if you prefer not to participate in the telephone interview, it will help us to receive as many surveys as possible.
Your help now will help the entire community in the future.
There has been a lot of misinformation going on (as is often the case with social media) regarding medications and other issues.
Yes there is a lot of misinformation out there and misinformation about, misinformation.
Yes many myths get carried forward but if you look in the right places, you can always find the truth. It is out there.
In our case, it is not a myth nor is it passing off placebo effects as actual positive results regarding some psychedelic drugs and the illness/diseases that they can positively treat.
First off, lets talk about the placebo effect. This can and does happen with medications. It is considered in clinical studies and it compares the effectiveness of a medication to the effectiveness of a substitute that is not treating the disease, such as a “sugar pill.”
For anyone to say the psilocybin is a placebo, means that the person stating this does not understand what a placebo is or the effect they provide. Anything can be used as a placebo. Ritalin is often used as a placebo. That does not mean Ritalin is not effective for many conditions. It would be used as a placebo because it is not effective in treating whatever it has been put up against in the study. Ritalin is used in many studies of psychedelic drugs. It will give a little “buzz” so the person knows they actually took a medication and not a sugar pill, but it will not treat whatever the psychedelic is being tested upon.
If the placebo (Ritalin) is 25% effective and the psychedelic being tested is 45% effective, there is evidence that the psychedelic is “more effective” than the placebo, therefore it is having a positive effect on the condition itself and not just having a psychological effect.
Placebos are funny things. If in our mind we think that we are taking something that will help us, we will sometimes see an improvement, but usually only for a brief period of time. This is why we often take a new drug for our clusters and it seems to work for a couple weeks but then our bodies seem to find a way around that medication. In most of these cases, it was just the placebo effect. A change in how our bodies react to a new drug.
When people report that they have had success using psilocybin or any other medication, for 10 years, it is certainly not from a placebo effect. Let’s also be clear about something else. These reports are not from just one person, or even a dozen people. These reports come from thousands of people and have been coming in for 15 years.
Psilocybin has been tested many times in clinical studies. These studies have proven psilocybin effective in treating many conditions. It has been tested for safety and the fact that these studies have proven its safeness, is obvious in that the FDA has approved its use in clinical studies.
There was one study done at Harvard University that showed the effectiveness of psilocybin in treating cluster headaches. This study was published in peer reviewed medical journals. This case series is not just considered more “anecdotal” evidence.
However, let us look at the word “anecdotal” and understand it’s meaning as some people don’t seem to understand the significance of anecdotal evidence.
Doctors write prescriptions every day, based only upon anecdotal evidence, especially for cluster patients. The only reason doctors write prescriptions to people with clusters for something like topamax is because of anecdotal evidence. It wasn’t tested and approved for clusters. It started to show positive effects on people with migraine so doctors wrote it for clusters as a test. As more and more people started to say they were getting some relief, this anecdotal evidence caused more doctors to write more prescriptions. It wasn’t a “study” that caused people to start getting treated with topamax.
Let’s look at Viagra. It is being used now for erectile dysfunction only because of anecdotal evidence. It was being tested as a heart drug, to treat angina, and was not showing good results. During the study, people were reporting this strange side effect and the “little blue pill” became a best seller. Strictly based upon anecdotal evidence.
Every time a doctor prescribes any medication for your clusters other than Imitrex, it is being prescribed because of anecdotal evidence. Every hand me down drug is handed down because of anecdotal evidence.
Clusterbusters has been around since 2002. People have coined the term “busters” for people that support our work. You don’t need to have ever tried psychedelics or even have cluster headaches to be a supporter and considered a “buster.”
If you’ve helped someone “bust” their cycle, I would consider being labeled a buster as a good thing. We have buster doctors, buster lawyers, buster judges, buster actors, buster atheletes, buster preachers and buster dentists. We have cluster teachers, cluster painters, cluster rockers and cluster bunnies. Some of us are cluster healers and others cluster censors. Call us what you want but we’re all cluster survivors.
As far as Clusterbusters and science, I think it’s pretty apparent to anyone that has looked at our site or follow what we do, to see that we are very interested and vested in science. If you just take a look at the schedule for conferences, you’ll see our attraction to science. We were actually built upon the science of cluster headaches and the science of treating cluster headaches. I would think that everyone would concur that our first study with Harvard was science at its best. Research is science. We didn’t use google as our scientist as some do. We used actual scientists and laboratories and all that highfalutin science stuff.
I would consider the genetic study that we are collaborating with doctors and geneticists at McGill University sort of scientific.
We have doctors/scientists/researchers making presentations at our conference. This is an educational conference where cluster patients and their families can learn about cluster headaches, including the science that is known, behind them. It is also an opportunity for these headache specialists to learn from the cluster community.
As far as the pharmaceutical industry goes, I personally have a very close relationship with them. They keep me alive. I’ve had two heart attacks and without them and several of their drugs, I would be dead. I consider that a pretty close relationship.
Clusterbusters understands that millions of people with cluster headaches rely upon the pharmaceutical industry to treat their clusters as well as they can. This will not be changing any time soon.
We feel it’s important for the patient community to work with this industry to help them come up with better and safer treatments. The pharmaceutical industry seems to agree. It was Clusterbusters that worked closely with Eli Lilly to help bring about the first phase three study of a new drug for cluster headaches in history.
The pharmaceutical industry as well as the medical device manufacturers have come to us for our input in how to improve the treatments they offer.
Clusterbusters recently got a back-handed compliment from one of our detractors that said it was good that Clusterbusters had finally come around to approaching, working with and embracing the medical and the pharmaceutical industries. This could not have been further from the truth or reality. In fact it has been the other way around. We have not changed one thing in our approach or our direction. The truth is that more and more the medical and pharmaceutical communities have embraced Clusterbusters and our work. Our door has always been open and those that are in the business of helping people with cluster headaches are walking in our door.
The pharmaceutical industry, the medical device industry, some of the best headache specialists in the U.S., other patient groups, national headache organizations, and several “alternative” treatments are always represented at our conferences.
They all want to hear what the patient community has to say. It’s a shame that there are some small corners of the internet that we can’t get these messages to. All we can do is put the information out there. We are confident that all the people that want to be a part of the solution are listening.
Clusterbusters has from its inception, been about providing as much good information as possible to everyone through what is called an “open source” policy. If we know of anything that can help people, it is made available for discussion and for each individual to consider. We do not believe we should be deciding what people are allowed to have access to or decide what is the right path for people to take in treating their condition.
Clusterbusters has never directed anyone to any one particular treatment. There is a very good reason for this. There is and never has been one treatment that works for everyone.
It is not our mission or job to determine what information we will share with you. It is our mission and job to share ANY information we have that will help people lead the best and most pain free life than can while living with cluster headaches.
As a patient organization, funded by patients, our biggest hurdle has always been getting our messages out to a larger audience. We can’t afford a 10 million dollar Super Bowl commercial but others can. Yes we’ve been able to get information out to tens of thousands of people over the years and help them lead better lives but there are approximately 7 million people worldwide that have cluster headaches affecting their lives. Millions of those people do not know the basics in effective treatments including high flow oxygen. We have always understood the need of help from the organizations that can reach the larger audience. Our efforts over the years are now showing results in an exponential factor> Those agencies, organizations, companies and individuals that have the ability to reach the masses are coming to us and helping us spread the messages we have offered for years. This has been achieved through the hard work by motivated advocates refusing to take no for an answer. Our patient community has learned that when they advocate for themselves, they are also advocating for everyone in the community. They have made incredible strides in improving the lives of everyone currently in the community and everyone that will become a part of the community in the future. When you teach one doctor about best practices in treating clusters, every patient that sees that doctor in the future will receive better treatment.
It is not Clusterbusters mission to decide which doors people may want to open in a search for better treatments. The reason for this is simple. It saves lives. People suffer with this disease for 30, 40, 50 years in some cases. If you put a cap on which options you are willing to share, people run out of options and run out of hope.
Clusterbusters is proud of their accomplishments over the years since 2002. Foremost are the tens of thousands of people living pain free lives using novel treatments or helping sufferers safely and more effectively using mainstream medicine.
We have worked with researchers at Harvard University, Yale University, West Georgia University, McGill University and others. We have worked with pharmaceutical companies including Eli Lilly and Xenon and others, helping them to develop safe and groundbreaking research and clinical studies.
We have worked with local, state and federal government agencies in numerous areas of research, funding and legislation. Our work with SAMSHA went directly to the agency that exists as the last resort for people that have lost all hope and to let them know that there is a community that offers the hope they need to continue living.
The Clusterbuster conference. Where mainstream science meets citizen science and work together. But even more importantly, where people that need help, meet people that want to help. It’s really that simple.
As part of our ongoing commitment to providing meaningful information, resources and support for those living with cluster headache, we wanted to share some information about an FDA-cleared, non-invasive, hand-held therapy called gammaCore™ (non-invasive vagus nerve stimulator), which has been shown in two clinical trials to treat pain associated with episodic cluster headache.
Here are some fast facts:
If you’d like to learn more about whether gammaCore may be an appropriate treatment option, talk to your healthcare provider and visit gammaCore.com.
gammaCore is available by prescription only. US Federal Law restricts this device to sale by or on the order of a licensed healthcare provider. Please see Important Safety Information. Please also see the gammaCore Instructions for Use.
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.