Meeting someone else with cluster headaches for the first time is an incredible experience. You’ve spent years, maybe even decades, fighting to get the right diagnosis and treatment. Many clusterheads struggle to get anyone in their lives to understand the severity of the pain and how it impacts every part of your day-to-day life. Regional support group meetings and the annual Clusterbusters conference are often life-changing for those meeting other clusterheads because, for the first time, you don’t have to explain yourself to anyone. We get it.
Resources and Support for Regional Groups
Clusterbusters has been expanding our regional support group program over the last few years. We currently have groups in Denver, Southern California, Michigan, Indianapolis, and New York. We work with regional group leaders to provide resources and other means, including:
- Sourcing a Meeting Space: This could be a local library meeting room or a space in a restaurant or café. Clusterbusters may be able to offer a stipend for costs, if necessary, such as rental expenses for meeting rooms.
- Providing Printed & Digital Materials: The regional groups are an excellent opportunity to share information about high-flow oxygen and other treatments. Clusterbusters offers local groups pamphlets and other handouts about cluster headaches so attendees can learn more about the neurological condition. There are also digital resources that can be printed or distributed to the group online.
- Advertising Online and In Local Areas: It takes time to build a regional group. Some of our current regions started with just two or three people at a local bar but blossomed into a dozen or more. Clusterbusters advertises regional group meetings online and in our newsletters. We can help you promote the group in outlets such as local newspapers, radio, and doctors offices and clinics in the area.
- Assistance in Finding Speakers or Providing Demos: Some of our groups have had a headache specialist come and present to attendees while others have done oxygen demonstrations. Clusterbusters can help facilitate speakers and demos for regional groups.
- Materials for Training ER Staff and Education Programs: Many cluster headache patients seek help at the ER because they think they’re having an aneurysm or stroke during their first few attacks. It’s critical for the ER staff to understand how to identify, treat, and refer those with cluster headaches at their hospital. Clusterbusters can provide materials for regional groups to bring to the ER staff and work closely with them to create an education program.
There are other ways to grow and expand resources for regional groups, such as creating in-state advocates to engage with local and state governments and reaching out to local media to increase awareness for cluster headaches.
How to Form and Lead a Regional Support Group for Cluster Headaches
Building a regional support group for cluster headaches may seem overwhelming at first, but the process can be quite straightforward. Clusterbusters can help you connect with others in your area with cluster headaches and come up with a date and time that works for those who want to attend. Larger cities are often ideal because patients are close in proximity, but some patients are willing to drive an hour or longer to go to a regional group.
Identifying the date, time, and the location is the first step. Then, we advertise the meeting online and locally to grow attendance, but don’t be discouraged if your initial meeting only has one or two people—Those are often the most powerful because you get to talk about most aspects of living with cluster headaches. The agenda for the group meeting will change each time. Clusterbusters recommends picking a theme such as treatment options for one meeting and PTSD symptoms for the next.
Regional support group meetings should always start by welcoming everyone who came and short introductions. It’s crucial for each person to have the opportunity to talk, whether they are a clusterhead or caregiver.
Contact Clusterbusters for Help Building Your Regional Group
If you’re interested in starting a regional group in your area or would like to join an established one, please contact Clusterbusters at email@example.com to learn more.