Once again I'm walking to raise awareness for headache disorders! This time: cluster headache. If you haven't heard of cluster headache it is a rare, primary headache disorder and one of the most painful conditions. You may have heard of these headaches referred to as suicide headache because of the increased risk of suicide among those who live with this disorder. There is no cure for this disease.
Most of you know about the migraine attacks I've lived with since childhood but may not know that since 2018 I have been disabled by cluster headache. I’m currently experiencing intractable chronic cluster headache which means I live with several attacks every day. At my worst they happen up to six times and at my best once every single day, with each attack lasting anywhere from 20 minutes to 1.5 hours.
The name cluster describes how headaches can occur seasonally or multiple times a day, and often around the same time. For instance I'm woken up by excruciating pain at 2am, another at 9:30am and 3:30pm, then at 7:30pm I can count on one while we are trying to get our kids ready for bed. The sudden and severe pain I experience every day makes it incredibly difficult to navigate life’s smallest but also most meaningful moments.
It took me 6 years to get a correct diagnosis of cluster headache. Why? Well, this is a relatively rare disease with limited research, awareness, and specialists to provide care. Also, it was incorrectly thought that that men were more likely to have cluster headache and women with cluster headache are often misdiagnosed with chronic migraine.
I am grateful for the love and support of my family as I try to manage my own health and I try to give back to the headache community by volunteering and spreading awareness. Just having you read a little about this headache disorder means the world to me :)
Exciting news: I reached out to Mayor Dr. Jeannette Sanchez-Palacios and she has proclaimed June 2025 Migraine and Headache Awareness Month in Ventura!
The friends and patient-sourced knowledge I've found through Clusterbusters have been a lifeline and helped me make incredible strides. Please help me support them with a donation if you are able to do so or sign up to virtually participate in the 5k!
This year's Cluster Buster 5k fundraiser is also partnered with AHDA to support the launch of the Headache on the Hill: A Visual Installation that aims to depict the vast impact that headache and migraine disorders have on millions of Americans. Thousands of purple flags will cover the National Mall Park near the nation’s Capitol Building in Washington, D.C. in representation of those affected by headache disease.
Learn more about this incredible installation here: https://flagsforheadache.org/
All my love,
Britt
