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Advocacy for Cluster Headaches

Cluster Headache is a relatively unknown condition by the general population. We’ve been able to get more press in recent years with emerging cluster headache treatments and news outlets often have a particular curiosity in the alternative therapies used to treat or prevent attacks such as psilocybin mushrooms and LSD. Many people who are part of Clusterbusters are interested in how they can help advocate for research and awareness. There are multiple ways to become an advocate for cluster headaches, which range from social media posts to trips to Washington DC.

Be Your Own Advocate

Advocacy starts with you. This often begins when men and women (even children) are misdiagnosed. You may have been told you have migraines for 5+ years, even though you have all of the symptoms of cluster headaches. You first have to become your own advocate by speaking with your doctors and making sure you’re heard. Private practices and hospitals schedule so little time with patients on top of what could be a months-long wait to be seen, which means you have to be clear about what you’re experiencing and that you need to be re-assessed to make sure you have the correct diagnosis or need to try a new treatment. That often involves a fast-acting medication in injection or nasal spray form and high-flow oxygen. (You can learn more on our oxygen page about what to ask your doctor for in terms of prescription and help getting access through local suppliers.)

Finding the right doctor, headache specialist, or neurologist for you may take trial and error. It’s an overwhelming, aggravating process that can take years for some patients. Once you’ve gotten the appropriate care and have a treatment plan in place, you may still have to advocate for yourself at your local pharmacy, oxygen supplier, as well as face problems at work and with friends, family members, and coworkers.

Keeping yourself educated and informed on your own condition is the first step in becoming an advocate.

After you’ve become a pro at advocating for yourself, there are a variety of events and projects you can become a part of including:

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Social Media Advocacy for Cluster Headaches

You can become an advocate on social media simply by posting your experience with having episodic or chronic cluster headaches and sharing updates from news stories and press releases. There’s a large group of cluster headache patients on Facebook, which varies from private groups to open discussions. We recommend the Cluster Headaches (Trigeminal Autonomic Cephalalgias) group.

Facebook has a quick and easy way to raise funding for your chosen nonprofit either on your birthday or whenever you see fit to create and post one. June is Headache and Migraine Awareness Month, which is another great time to host a social media fundraiser.

Twitter has a growing clusterhead population, which can be found using #clusterheadaches, #clusterheadache, or through the Clusterbusters Twitter account @Cluster_buster. We also host Twitter Chats called #CHtalk, which are listed on our events page. Instagram and Pinterest are a relatively untapped market for cluster headache advocacy.

Social Media Event Days:

  • #UnderTheHat is a social media event challenges you to post a photo of yourself wearing a hat and sharing your experience with cluster headaches. It takes place around the Spring equinox each year on March 21st. This is because episodic cluster headache patients tend to go into cycle around the equinoxes, while chronics can experience “high cycle,” where the average number of attacks increases.
  • #WorldClusterHeadacheSurvivorDay takes place on July 5th. This event began in the U.K to help raise awareness and has reached across the pond.

Regional Support Groups in the U.S. & Abroad

Clusterbusters is affiliated with and supports several regional groups across the country. Some meet on a monthly basis, while others meet quarterly or according to the attendee’s schedules. This is a great way to advocate for cluster headaches in your own area and connect with other clusterheads. We currently have groups in Denver, Michigan, Texas, Alabama, California, Indiana, and the Northeast. Learn more on our events page about regional groups and how you can be involved.

Headache on the Hill

Headache on the Hill is an annual advocacy event held every February in Washington DC by the Alliance for Headache Disorders Advocacy. Every year advocates from across the United States come together in DC to speak with their state representatives and congresspersons to make sure adequate funding is put towards headache research along with improving legislation for head pain and disability. Clusterbusters has been a part of this event for many years and offers travel scholarships for clusterheads who live in states that are unrepresented and need help traveling for the event.

The Annual #CureforCluster VIRTUAL 5k

The #CureforCluster 5k began in 2017 and has grown exponentially since then. This virtual event takes place the third Saturday of June each year. As cluster headaches are rarer than most of the primary headache disorders, Clusterbusters believes a virtual 5k is the best way to bring many of us together one day a year to show our faces, share our stories, and make sure our voices are heard. Participants can run or walk at any time the day of the event at home on the treadmill, at a local park, with kids and pets, etc. The goal is to flood social media each year with photos of patients in their t-shirts using the hashtag #CureforCluster. The 2019 event had 107 participants in 5 countries and 100% of the proceeds go toward cluster headache research.

Sign up or learn more on the #CureforCluster Race Website.

Volunteer for Clusterbusters

The team at Clusterbusters has multiple projects going on at all times and welcomes volunteers. This can range from volunteering out at our annual patient conference to helping us stay updated on social media and increasing our online presence. Please contact info@clusterbusters.org for more information on how you can volunteer for our nonprofit organization.

Learn more about volunteer opportunities with Clusterbusters.

The Annual Clusterbusters Conference

Clusterbusters hosts a conference in the U.S. every year. It’s the driving force behind our organization and it’s an incredible experience to walk into a room with 150+ other patients who not only understand your pain but can help you through the psychological aspects of living with this painful condition.

Visit the Events page to see about upcoming conferences.

Contact Clusterbusters

Please contact us if you have questions or would like to be involved in any of the events and opportunities listed above.