Please support my family as we walk to raise awareness for cluster headache. This is one of the most painful conditions, often compared to childbirth or kidney stones, and it’s sometimes known as suicide headache because of the increased risk of suicide among those who live with this disorder.
This year's Cluster Buster 5k fundraiser is partnered with AHDA to support the launch of the Headache on the Hill: A Visual Installation. The installation 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.
I have lived with headache disorders for 29 years. Most of you know about the migraine attacks I've lived with but may not know that since 2020 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 two times 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 am woken up by excruciating pain at 2am, attacks come 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 and awareness. Also, historically it’s been thought 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 as I try to manage my own health while also giving back to the headache community by fundraising! With this Administration’s attacks on critical women’s health research it's even more important for us to help where we can even in small ways.
https://www.givegab.com/campaigns/headache-on-the-hill-a-visual-installation
