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Patient Advocacy & Citizen Science

by | Jul 11, 2015 | Busters Blog


I think this subject is very important for everyone in the cluster headache community to be made aware and understand.

It’s something that few cluster patients know unless they’ve been following closely through social media and other online outlets over the last 15 years.

We hear all the time from people that are newly diagnosed and stating there are so few options available.

Really? You should have been here 15 years ago.


With a lot of new research on the horizon, I think it’s a great time to take a look at the available improvements in cluster treatment and the information base available for those wanting to learn about their condition. Let’s review the state of where and how we get our information, the information available and current level of understanding patients might be able to get from family members, employers, school administrators and anyone else we deal with in life.


Here is a list of improvements in how we live, treat ourselves and survive and in the end, thrive. Let’s look at the development of treatment options and media attention that helps to educate ourselves and those we live with every day. How much do we know, where did we learn it and how much has it improved our lives. If you are feeling better and the people you deal with are more educated about cluster headaches, who is responsible?

What has changed in the last 15 years…….

Improvements and additions to treatment choices

1. Discovery of and refinement of LSD (Lysergic acid diethylamide) as a safe and viable treatment. It is still illegal but thousands of people have used or are currently using it to treat their clusters and it is spurring new research related to this molecule.
Source: Citizen Science (CB Clusterbusters) (Clusterheadaches dot com) Funded research: (CB) (location-Harvard University)

2. Discovery of and refinement of LSA (d-lysergic acid amide ), also known as Ergine, as a natural substitute for LSD. Safe and viable treatment for cluster headaches. Similar in nature to many ergot based treatments used for many years for headache disorders. Considered more efficacious with fewer side effects as treatments last longer and less medicine is required.
Source: Citizen Science (CB) (Clusterheadaches dot com)
Source of Funding for research: (CB) (location- Yale University)

3. Discovery of and refinement of Psilocybin as a natural, proven safe over 3000 years of treating headaches, viable treatment for cluster headaches.
Source: Citizen Science (CB)
Source of Funding for research (CB) (location – Harvard University)

4. Discovery of and clinical study to prove safety and efficacy of BOL-148 as a non-hallucinogenic analog of LSD. Early study showed better results than anything currently available including other psychedelic substances. Currently in drug development. Its discovery spurs additional research in this area. Source: Citizen Science (CB research project into psilocybin)
Source of Funding for research (CB) (location- Joint project, Harvard U. & Hannover U. in Germany & Clusterbusters)

5. Discovery of and refinement of treatment plan of DALT. A non-hallucinogenic analog in the tryptamine family. Earlier safety studies and early results of efficacy show it to be safe and it’s effectiveness to be better than anything on the pharmaceutical market for many.
Source: Citizen Science (MP)

6. Discovery of and refinement of D-3 regimen which includes no substances requiring a prescription. Provides high efficacy rates. Safe with minimal monitoring required.
Source: Citizen Science (PB) The inclusion of some of the substances in this treatment was based upon prior study, both inside and outside of mainstream medicine. Based upon proven science. The combination of these substances comes strictly from cluster patients. The refinement of the combination comes strictly from the patient group.

7. Discovery of and refinement of Kudzu root as a natural and safe treatment for cluster headaches.
Source: Citizen Science (CB) (Clusterheadaches dot com)
Source of Funding for research: Patient Group (CB)

8. Study of real life effectiveness of prescription medications and alternative treatments. Comparing study results out of the lab to actual results among cluster patients. Funded by, and data collection by, cluster community and carried out at Yale University.
Source: Citizen Science (CB)
Source of Funding for research: patient group (CB)

9. Discovery of previously unknown side effects of Imitrex/Sumatriptan. The study that proved that Imitrex use can extend cycles, increase the number of attacks and increase the severity of attacks, over long term use.
Source: Citizen Science: This issue was brought to light and studied only after data collection and pressure put on the medical community from the online cluster community. Study initiated after pressure from: (CB) (ASHM)

Additional studies carried out by headache specialists like Dr. Peter Goadsby and others have shown that many prescription medications commonly used to treat cluster headaches can have adverse effects in the long term.


Improvements and additions to adjunct treatments and therapies

  1. Ginger tea. Provides help with “shadows” and low level cluster attacks. Research into safety aspects carried out by patient community & CB & published by CB.
    Source: Citizen Science (CB)
  2. Energy drinks. Scientific and analytic study of active ingredients causing positive results determined that higher concentrations of taurine improved the effectiveness. Research of differing concentrations and efficacy completed by CB and published by CB.
    Source; Citizen Science (CB) (CH.com)
  3. Skullcap: a natural herb with anti anxiety properties as well as treating neuralgia and insomnia was researched and brought to the attention of cluster headache sufferers by members of CB. Research carried out provided data showing its effectiveness as an adjunct treatment and very helpful for many sufferers.
    Source: Citizen Science (CB)
  4. Oxygen
    A. Mask:
    Improvement of mask from Standard non-rebreather mask to Cluster mask/Opti-Mask. A game changer for a large percentage of people not getting relief from the standard set up used for decades prior to the advancement.
    Source: Citizen Science (CBer Ben Kahn)
    Funding: personal funds, patient group
    B. Flow Rates:High flow rates: For decades there was no change from the prescribed flow rates of  7-10LPM. Another game changer for those people not getting relief at all, improved to the majority cutting the duration of their cluster attacks up to 80%

Source for all advancements in oxygen therapy:
Citizen Science (CH.com) (BK) (OUCH US, UK) (PB) (CB)
nding: Personal funds, 02 supply company, OUCH US

           C. Availability:
            Huge advancements in approval of oxygen as a treatment,
and doctors prescribing it and making it available to patients, in the UK,
In the US and elsewhere, groups such as OUCH US and CB along with a
dedicated group of headache specialists advance the use of 02 and
improve prescribing information and availability.

              Source: Citizen research and advocacy (Patient group)


Psychological Issues

A. PTSD: Correlation between clusters and PTSD brought to light following patient group study showing PTSD testing scores up to 4 times higher than the diagnostic range.
Source: Patient advocacy (CB)
Preliminary study funding: Patients (CB)

 B.  Suicide prevention
Availability of online support groups
       2. SAMHSA (See government below)
Source: Patient Advocacy
Source of Funding: Patient group (CB)



  1. Change of male to female ratios from 8:1 to the currently widely accepted rates of 2/3:1. This change has been instrumental in getting female patients properly diagnosed much sooner than previous, in terms of years.
    A general sense of a decrease in the number of women being told that women don’t get clusters.
    Source of change: Patient groups. (See Education) (CB)(Clusterheadaches dot com) (OUCH)
    Source of Funding for advocacy: Patient groups
  2. The largest study of Cluster headache demographics was funded and designed and carried out by the patient group OUCH and other individuals and physician investigators. (See Rosen study)

      Source of study: patient groups (OUCH US & CH.com)

      Source of funding: Patient groups
Diagnostic Times

1. Diagnostic times have dropped from an average of 8 years to the present range of 1-2 years.
Source of change: Although much of this can be traced back to professional organizations and headache specialists educating the medical community, a large part of this is due to constant pressure from patient organizations and many individual’s education efforts. (See education & Media)

Studies have determined some of the reasons behind this long period before proper diagnosis. Determining where people are being misdiagnosed, such as dental offices, helps patient groups and professionals direct education to where it is most urgently needed.



1. Legislation Working with SSA & congress on disability issues, medication coverage’s & hearings.
Source: (CB) (AHDA- Nonprofit group of headache orgs, professional and patient)

2. Government Agencies Research Funding: patient groups working with NIH and congress (CB) (AHDA)

3. National Suicide Hotline: The agency that is in charge of suicide prevention in the United States is SAMHSA. Until a few years ago, they had never heard of cluster headaches. The nickname of suicide headaches hadn’t made an impression. A training manual for all their operators was developed and made part of the training of all operators working the hotlines.
Source: Cluster community (CB and their medical advisory board)



Whether you approve of psychedelic treatments and research, or not, it has been responsible for the vast majority of the media coverage cluster headaches have received over the last dozen years. Most times the “hook” that brought out the reporters and the story, ended up centered on cluster headaches and the severity of the condition that would lead people to try these treatments. Whatever the reasons for the publicity, it was the cluster community that generated the publicity that has taught the world about cluster headaches. It’s not being taught in the classrooms.

       1. Television (examples)
           A. Documentaries (2) National Geographic Documentaries
B. News Programs Dozens of local and National TV spots in Health
segments. Physicians and patients alike have appeared on local and
national TV specials.
C. Full special presentation on National TV network from Washington DC
on advocacy efforts.
D. Two episodes of the TV series “House” featured treating clusters and
migraines with psychedelics. All information was taken from the
Clusterbusters website and message boards.

  1. Newspapers
    Examples: Front page, Chicago Sun Times
    Front page, L. A. Times
    Hundreds of local and national newspapers
  2. Print Magazines
    A. Newsweek
    B. Wired
    C. Nature
  3. Radio
    Dozens of local and National Radio spots
  4. Web Presence
    Hundreds of feature coverage on websites and news organizations
  5. Medical Journals
    Examples: Patient sponsored research:
    A. Cephalalgia
    B. The Lancet
    C. Neurology
    Media coverage source: patient advocacy & education.All examples above attributed to CB advocacy efforts. Many other appearances in media attributed directly to patients contacting their local of national media outlets. OUCH US was instrumental in getting this sort of coverage underway. They were responsible for bringing cluster headaches out of the closet.


Patient organizations (CB) (AHMA) (OUCH UK) are training the medical profession on cluster headaches.
1.   Media (See above)
Through all the media outlets, not only is the general public taught a great
deal about cluster headaches, which makes acceptance so much easier
than before, but sufferers and doctors learn about the condition. This
opens up opportunities for conversations that hadn’t happened in the
2.Professional Conferences Headache Specialist conferences for training.

3. Patient Organizations keeping a focus on cluster headaches Headache
Disorder Research Symposiums
Attending and pressing the need for cluster specific research is paying off.
4. Cluster Organization produced conferences (CB) (OUCH) (OUCH UK)
training new patient advocates  and introducing the medical community to
the patient group to learn all involved in living with cluster headaches.
5.  The most important group that can be educated is the patient group itself.
For patients that are connected to groups and online resources, there may
not be a better educated group than those in the cluster headache
community. Between websites, online communities and increased
resources being made available, patients are able to make sure they are
getting the best care possible and have the information required to become
their own best advocates.
Current Research in the pipeline

  1. CGRP’s being studied in Cluster headache
    Eli Lilly Pharmaceuticals
    Cluster Community involvement (CB)2. Genetics in Cluster Headache (CB collaboration with another professional headache organization and McGill University in Canada)
    3.  Psilocybin and Cluster headaches (CB collaboration with Yale University and Veterans Administration)
    4. Psychological Burden of Cluster Headaches (CB in collaboration with
    University of West Georgia)5. Medical Devices:
    a. ElectroCore – GammaCore- non-invasive electrical stimulation of the
    vagus nerve
    b.  ATI – minimally invasive electrical stimulation of the Sphenopalatine ganglion nerve.
    c.  Occipital nerve stimulation6. Ketamine infusion research – Switzerland


If your doctor has not yet been reached by citizen science and patient advocacy, this is likely your story;

You have waited 8 years to finally be diagnosed with cluster headaches. Odds are if you are a woman, you are still waiting so, if you are a male, you have been prescribed:

240mg of verapamil and imitrex injections. After that, you are looking at a long list of mostly ineffective drugs prescribed off label and handed down from standard migraine treatments, blood pressure meds, mood stabilizers & anti-seizure meds. Most of these medications are prescribed for clusters at much higher doses and increased safety concerns than if prescribed for the condition they were developed to treat.

You have another appointment to see your doctor in 30 days because you are still hurting, a lot.

If you have a doctor that has tried to keep up with what mainstream medicine is doing, then he has prescribed oxygen on your return visit. Unfortunately it will be prescribed at 6-7 LPM with a non-rebreather mask and told not to use it for more than 15 minutes.

What this list shows you is that ALMOST ALL of the advancements in cluster headache treatment and knowledge among the general public, over the last 15 years, is due specifically to people with clusters advocating for themselves and others. Citizen Science and patients exercising their freedom of speech to educate the masses.

If your boss or Mother in Law said, “Oh, I’ve heard of those and they are terrible” the odds are they heard about it because of someone with clusters advocating for you. If your doctor prescribed high flow oxygen, it’s because of someone with clusters advocating for you. If it is more effective since switching to a “Cluster Mask,” you are getting better results because someone with clusters has advocated for you. What this list tells you is that if you are using anything on this list to help you survive cluster headaches, the odds are that you owe it to someone with clusters advocating for you.

If you don’t believe in citizen science and patient advocacy, and you’ve only had clusters for two years and are using a cluster mask at 15LPM you should do the following:

Send back your oxygen tank and go to your dentist and ask him to please do a root canal to relieve that terrible pain. Then wait another 6 years and then call your 02 supplier, because you won’t be properly diagnosed for another 6 years. If you don’t believe in citizen action, and have waited long enough to be diagnosed, you can have your 02 but don’t turn your regulator on past 8LPM.
There are a LOT of people to thank for all these advances, but the reason for this list is to convince you of the following: If you are sitting back and waiting for the “system” to help you, then please realize that YOU are the most important part of the system. YOU need to advocate. YOU need to research. YOU need to educate. If you need hope, or know of someone that needs hope for a better future, YOU need to read this list and see that it is possible to find. You can’t sit back and wait for it to find you.

If you don’t believe in citizen science then consider this. If there is something available for you right now that you are completely satisfied with and have completely eliminated your clusters, and you aren’t worried at all about your family or friends and maybe your grandkids being diagnosed in the future, because of it, then great. If not, then someone has to ask for something new that isn’t FDA approved yet or available at Costco. Someone has to ask about things that aren’t currently prescribed. Is your doctor out of options? Who is going to talk with him?

Some of us are asking. Some of us are looking for new things. If you look at the list above, patient advocates are your best chance. You can help us and be your own best chance. You can stand aside and wait for us. Either way is fine, but please don’t stand in our way.

Yes there is a system in place that asks the medical community to make advances in treatments and searching for an eventual cure. There are many people in these positions where it is their job to make these advancements. Some within the system where profits are overriding issues. Some work on solutions for other reasons. As the system moves forward, guided by various motivations, our job as patients is to look outside the system to find things that can help us. Bring what we know and can find, to the attention of the health community so it can be researched and made available to the masses. It’s very simple and obvious that all discoveries are made by looking at new ideas and possibilities and not being satisfied with the status quo. You can put your life in the hands of others or you can help find your own answers. It doesn’t require a college degree or money or anything other than motivation and a willingness to speak up and demand to be heard. You can put the future health of your children and grandchildren in the hands of others and hope they find answers, or you can help in that search. Who has more reason to find better answers than you? No one. You don’t need to join any organization or follow anyone else’s path. Great discoveries and great advancements are made by individuals.

In the US, much of new research starts with the NIH (National Institutes of Health) where new medicines are developed and then turned over to the pharmaceutical industry to further develop and if efficacious, proved safe thru clinical study while under FDA supervision. The NIH is where new drugs are born.

In the last 25 years, a total of two million dollars has been devoted to cluster headache research. In today’s research world, that isn’t enough to pay for the lawyers required, let alone scientists and lab work.

Until the recent announcement by Eli Lilly of their new cluster headache clinical study, in which Clusterbusters played a role in getting underway, there had never in history been a new cluster headache medicine that reached the stage of phase 3. Three hundred and fifty years is a long time to wait for the pharmaceutical industry to develop a medication to treat the most painful condition known to mankind. Without patient involvement, it may be another 350 years before another is developed.

If we listened to people that told us no, or people that tell us to wait for the “system” to help us, the list above would be replaced with the currently available list below:


Yep, that’s the list.

Finally, let me say this. Information is the most important thing that people with clusters need to survive. To know there are many treatments currently available that your doctor may not know about and that there are many new options coming soon, is necessary to continue the fight for a good life.

There are approximately 7 million cluster sufferers world wide. Of that number, 2.2% will attempt suicide. That is about 154,000 people. How many will be successful, no one knows. Whatever the number, it is far too high and an unnecessary loss of life. Anything or anyone that stands in the way of dispensing life saving information, costs lives. No one knows what small bit of information may save a life. How many have lost their lives without ever knowing that high flow oxygen can change their lives for the better? There is no single answer out there for everyone. The technological world we live in today makes it possible to reach almost everyone and they need to know that they are not alone in their struggle. We all have the opportunity to play a role in saving lives by making our voices heard and spreading knowledge. Whether you just share a link, help educate your doctors, call your local newspaper, or a hundred different opportunities to let people know they are not alone, you have the power to change and save lives.

Don’t be silent.

Bob Wold





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