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. 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. Our support groups meet virtually, and we also offer one-on-one support opportunities. We hope to bring back in-person groups soon, but will continue to offer virtual groups and one-on-one support.
Clusterbusters Virtual Support Groups
If you would like one-on-one support, reach out to us via email to request a phone call or email. Get connected with a person who can help you answer your questions, offer resources and an ear.
Caregivers and Supporters of Cluster Survivors: Facebook Group
Caregivers and Supporters are an important part of our community. A fellow Caregiver/Supporter has volunteered to create a space to support your unique needs. The Facebook group can be found here. It is private, so make sure you answer the membership questions for admission.
Resources and Support for Groups
Clusterbusters has been expanding our support group program over the last few years. We currently have virtual groups but as people become more comfortable, we plan to help with the transition back to in-person while still maintaining our virtual groups. We had groups in Denver, Southern California, Michigan, Indianapolis, and New York. We will work with 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.
- 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 group. Some of our current groups 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 doctor’s 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 to 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 groups, such as creating in-state advocates to engage with local and state governments and reaching out to local media to increase awareness of cluster headaches.
How to Form and Lead a Support Group for Cluster Headaches
Building a 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 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.
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