In 2002, Clusterbusters was formed to take a pro-active role in researching for a cure for cluster headaches and find new and improved treatments.
Eventually, 6 advocates traveled to Boston and met with the administration of Harvard Medical School and convinced them of the importance of this research and they agreed to undertake the first psychedelic research project at their institution in 40 years.
On Feb 9th, 2004, an agreement was signed to begin research at Harvard University, looking at using psilocybin as a viable treatment option providing results far better than anything currently available.
The first published results from this groundbreaking clinical study of this treatment appeared in the prestigious medical journal Neurology in June of 2006. This has been an incredibly long and often frustrating process that included the discovery of BOL-148, starts and stops of every fashion, thousands of people finding relief with various new options and an unending determination to push forward past every obstacle.
The growth of Clusterbusters into an active and successful advocacy group for the entire community, built with contributions from hundreds of people that refused to let the words “can’t”, or “no” stop them from helping others. Along the way we have added some incredibly dedicated advocates, we have lost one of our original research team members, Dr. Andrew Sewell, added extraordinary researchers and headache specialists to our team, overcome those that have tried to stop us and will continue to push forward. There are still doors to be knocked upon, barriers to be overcome and miles to go, but we will not be denied.
Yes, it has taken 14 years, and we have moved locations, but I am both proud and pleased to announce the following IRB approved release:
Adults with chronic cluster headache, age 21 – 65, needed for a research study investigating Psilocybin in the treatment of cluster headache.
ClusterBusters, a non-profit advocacy and education group, is participating in the recruitment of subjects for a pilot study investigating the safety and efficacy of psilocybin in cluster headache. This study is taking place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine.
Earn $100 per test day. Three test days total.
Call (203) 932-5711, ext. 4335
All calls are confidential
HIC # 1607018057, HSS # DD0063
Biological Studies Unit, VA Connecticut Healthcare System, West Haven Campus
A few details of explanation:
Congratulations and thank you to everyone that has worked so hard for all these years to make this happen.
Have you registered on the Clusterbusters “Patient Registry” yet?
Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
By completing this simple form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. By joining our list you will be kept up to date on all the newest studies and research.
Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
People from all walks of life, all ages and every description, suffer from cluster headaches.
We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
Be a part of a better future for cluster headache patients and participate in our registry.
As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board.
Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at 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 year’s conference.
Even if you can’t make the conference, we’d love to have everyone appear on the registry.
I’m happy to present the following guest blog contribution. It’s on a very important topic to many people suffering from cluster headaches. Any time we have the opportunity to present expert opinions on important topics, we strive to bring it to our members and the general public.
Deanna Power is the Director of Community Outreach at Social Security Disability Help, an independent organization dedicated to helping people of all ages receive Social Security benefits. She specializes in helping families determine whether or not they medically qualify for benefits. If you have any questions on how cluster headaches may qualify, or need any additional help, she can be reached at firstname.lastname@example.org.
Deanna’s experience with SSD and also being the supporter of a cluster sufferer makes her uniquely qualified to speak out on the subject. Thank you Deanna for helping us educate and advocate for the cluster headache community.
Cluster Headaches and Social Security Disability Benefits
If you experience cluster headaches, you know how completely debilitating they are. Research is completely underfunded, treatment success completely varies by patient, and the cluster community is wildly underrepresented. I only first heard of cluster headaches once my partner started getting them. Because of the lack of awareness of the severity of the illness, it’s very challenging for people diagnosed with cluster headaches to be approved for Social Security disability benefits. Although challenging, (and frustrating), it is possible.
The First Hurdle to Overcome: 12 Months Disabled
Every disability approved by the Social Security Administration (SSA) needs to last for at least 12 months, or be terminal. The majority (around 90%) of cluster headaches come in “cycles” for sufferers, meaning you can go months or even years without an attack. This limitation is yet another hurdle people with cluster headaches to overcome. If your cluster headaches are not chronic, you will almost certainly not qualify for Social Security disability benefits.
If, your cluster headaches are chronic and you’re constantly plagued by the pain, you have a chance of qualifying for disability benefits.
Medically Qualifying with Cluster Headaches
Every time the SSA receives an application for disability benefits, it will compare your medical records to its own medical guide known as the Blue Book. The Blue Book lists hundreds of disabilities that can potentially medically qualify for benefits, and the exact test results or symptoms you’ll need to be approved.
Cluster headaches are not listed in the Blue Book, which is why it’s so hard for you to be approved. There are two ways you could be approved for disability benefits if your disability is not listed: Meeting another listing, or qualifying through a Medical Vocational Allowance.
Medically Qualifying: Meeting Another Listing
The Blue-Book listed disability that you closest meet with Cluster Headaches is found under Section 11.00, Nonconvulsive Epilepsy.
Before you think “epilepsy, no way,” consider the symptoms required to qualify. This Blue Book listing states that you must experience alteration of awareness or loss of consciousness and “manifestations of unconventional behavior,” or significant interference with activity during the day.
Anyone who’s had a cluster headache or has seen someone have one knows that it’s impossible to do any normal activity until the headache subsides. In addition to the “alteration of awareness,” your headaches must occur more than once weekly, and they must occur despite at least 3 months of prescribed treatment.
This means that if you are not receiving treatment from a doctor, you will not qualify under this listing, regardless of the severity of your headache. If you are receiving treatment, like using oxygen and taking various forms of medications (such as sumatriptan), but you still suffer from at least one cluster headache a week, you could medically qualify under the epilepsy listing.
Medically Qualifying: Medical Vocational Allowance
The second way to qualify for Social Security benefits is by qualifying for what’s called a Medical Vocational Allowance. This allowance is for claimants that do not qualify for disability benefits through the Blue Book, but clearly cannot work anyway. Your best bet of qualifying for a Medical Vocational Allowance is by having a doctor fill out a Residual Functional Capacity (RFC) evaluation on your behalf. An RFC is a questionnaire that helps the SSA see exactly how your cluster headaches affect your ability to work, from your ability to stand, walk, lift weight, and more. You can download an RFC for your doctor to fill out on your behalf online.
Qualifying for a Medical Vocational Allowance will be much easier for people who have dangerous and physical jobs that jeopardize themselves and others if a cluster headache strikes. For example, if an airplane pilot would more likely be approved than a software engineer who works at a flexible company, allowing him to stop working until the headache passes.
Applying for Social Security Benefits
There are a few options available for you when you decide to apply for Social Security. If you’ve worked throughout your life you can most likely apply entirely online. If you’ve never worked or if you haven’t worked recently–such as a young applicant or a parent who took time off to raise a child,–you will need to stop by your nearest SSA field office.
The most important component will be to submit every piece of medical evidence you’ve had. This includes statements from every doctor you’ve seen, all the medications or treatments you’ve tried, and exactly what types of activity you’re limited to. There’s no such thing as adding “too much” information onto your application.
The more you show SSA’s disability examiners how much your cluster headaches affect your life, the better your odds of approval. Some documents and information you should prepare for your application include:
A complete list of what you’ll need to apply can be found on the SSA’s website, within its Adult Disability Starter Kit.
What to do if Your Claim is Denied
Unfortunately, the fact of the matter is that most people are denied benefits the first time around. In fact, only about 30% of applicants are approved initially. If your claim is denied, do not give up on applying for disability benefits. There is a lengthy appeals process available for you, and the majority of applicants are eventually approved after appealing their claims.
The first step of the appeals process is filing for reconsideration. This online form asks the SSA to look at your medical evidence again and revaluate your claim. The majority of reconsideration requests are still denied.
The second step of the appeals process is appealing in court and having an Administrative Law Judge (ALJ) review your claim. This is where most applicants are approved for benefits. In fact, nearly 50% of claimants are awarded benefits at their hearing. The reason for the higher approval rates is because you will be given the opportunity to plea your case in person. Many people have witnesses speak on their behalf during ALJ hearings.
If your disability hearing is denied, it is advisable to restart your application instead of continuing the appeals process. You cannot supplement your appeal with any additional medical information after an ALJ hearing, which makes later appeals nearly impossible to win.
The application process may feel overwhelming at times, but do not give up! If you are able to submit the medical records proving how severely your cluster headaches affect your life, and you know you will not see relief for at least 12 months, you may be financial assistance your family needs.
When I started Clusterbusters, I knew I had chosen a difficult route and uphill battle in getting the things accomplished that so many of us knew needed to get done. If we were going to bring cluster headache treatment out of the 18th century and into the present this was not the easiest path. Making positive changes on a global scale are never easy.
One of the biggest obstacles we had to overcome turned out in the end, to also be one of our biggest helps in bringing about awareness. Psychedelics.
When people questioned their effectiveness or safety, we took the approach of doing more research, providing more evidence & explaining the facts. If people didn’t understand, our job was to educate. If people understood but were afraid, we provided information to help ease the fears. The only way to do this was provide the truth and the facts.
When we put ourselves “out there” and expanded the scope of the conversations, and proved that reasonable people can discuss these options without ending up in jail, our reach grew and we refused to hide facts that could help people in need.
Over the years we have been able to get more press and exposure for cluster headaches and those that suffer, than had ever happened leading up to that point. Although many people tried for years to get exposure in the media, it was never easy to get anyone to listen. We didn’t have Jerry Lewis. We didn’t have what was thought to be “newsworthy” and part of this was also made more difficult because we had all spent years hiding our condition rather than trying to show what was happening or try to explain it to people.
What we did have were psychedelics. What we did have were people that were willing to show themselves in life changing chronic pain and what we had found that could help people.
Whether people like it or not, and some did not like our story, we finally got the attention of the media as well as politicians and the medical community because we were using psychedelics. Now there was a story that news outlets wanted to run. Who are these people that are suffering so much that they would be turning to street drugs to treat their pain. The fact that we were suffering from something nicknamed “suicide headaches” and all the lives that had been destroyed over the years was never enough on their own.
The first front page story in any major newspaper regarding cluster headaches was a story of someone treating their clusters with mushrooms and growing his own medicine.
Almost every headline or TV trailer included the word psychedelics and there have been thousands of them now. The hook was psychedelics but the story was in the people. The story was what we were all living with and what we were trying to do on our own because the system wasn’t being of much help.
The first “doctor” to prescribe psychedelics for cluster headaches was done on national TV for all the world to witness. Magic Mushrooms (psilocybin) were used to treat cluster headaches on an episode of House. This was the first time clusters ever made their appearance on television and described as a serious condition.
When the producers of the show were contacted, they informed us that they had taken their information and developed their storyline based upon the information on our website. They then followed up this original story with another along the same lines when they had Dr. House treat his migraine headaches with LSD.
When the facts were put out there, the medical community could not run from the facts. As more and more stories went out and people went public, they could not ignore the facts of the molecular similarities between what we were using and having success with, and the chemical activities in our brains. As more and more discussion occurred, more and more doctors and researchers agreed that it was understandable that these substances would work.
In many cases, our hook was the psychedelics but in the end, the stories most often centered upon the people and the condition and either didn’t focus on the psychedelics or completely ignored the psychedelic angle and the facts about the people and what clusters do to people, was all they needed for their story. Psychedelics may have opened the email or enticed someone to answer the phone, but it was the stories of strength and survival that would become the news.
“Other than people diagnosed with cluster headaches, I have never heard anyone admit honest disappointment with an MRI that ruled out a brain tumor.”
Headache on the Hill
The Alliance for Headache Disorders Advocacy was formed by the top neurologists, headache specialist and advocacy organizations to lobby in Washington DC for additional research funding for these disabling disorders. To make the people that make the decisions on funding accountable for the chasm between the appropriate amounts and actual.
Each year we gather together to meet with our senators, representatives and appropriate agencies for a day of advocacy, education and awareness in Washington D.C.
Our goals are to educate those that are responsible for addressing the needs of over 36 million people in the US with headache disorders. We point out the deficiencies in current treatments, the impact upon society in both the suffering and financial burden, and the disgraceful amount of research funding that is allocated each year to alleviate these shortfalls.
We attempt to meet with representatives from as many states as possible and pay particular attention to those members of congress that sit on committees that can positively affect our objectives.
We carefully construct a specific set of “asks” which we bring to these meetings which outline what we are hoping to improve. Whether it be increased funding, improved targeting of available funds or changes in policies that can produce positive effects upon millions of lives.
Many times we are able to team up physicians that can explain the medical aspects of our “asks” with patients that can explain the personal impact these conditions have upon not only the individual but the entire family.
Through these efforts we have already been able to achieve very real improvements within the system that have and will continue to translate to improvements in the lives of millions.
We are currently involved in battling the SSA and CMS (Centers for Medical Services) in an attempt to get Medicare and Medicaid to cover oxygen. We will get this done. It takes a lot of people to connect the chain of events that will make the change happen. Will you be the link that makes this happen?
We travel each year to DC to advocate for improving the lives of people living with headache disorders.
We team top headache specialists with patients to meet with our representatives.
We point out the need for policy changes and increased research funding.
We make clear the positive impact these changes can have upon not only their constituents but the positive financial impact these changes can have upon the economy by cutting health care costs and allowing people to lead more productive lives.
Some Issues facing cluster headache sufferers
Because the pain is so severe, sufferers have spent much of their time with condition, hiding it and themselves from family, friends and society.
Because of this we have an enormous job ahead in education, awareness and advocacy.
An example of a neglected condition is that even though clusters are nicknamed the suicide headache, the agency running the National Suicide hotline hadn’t even heard of them. Because of our work in DC, not only do they now know about us, the operators are now trained on how to handle calls from cluster headache sufferers. They won’t be met with, “yes I get migraines so I know how you feel.”
Cluster Headaches are easily diagnosed if done so by a knowledgeable physician.
Unfortunately, besides many other misdiagnosis and mistreatments, over 40% of people with clusters end up having dental work done such as root canals and tooth extraction prior to a proper diagnosis.
Reducing the diagnosis time will eliminate years of suffering and unnecessary surgeries and medical treatments.
Awareness and education directed toward:
There is much to be done in Washington DC. Please join us next year on February 8 & 9, 2016 along with the AHDA (Alliance for Headache Disorders Advocacy) as we keep the pressure on those that have the power to help us.