STRENGTH IN EVERY STORY™
Overcoming the Challenges of Cluster Headache
Ashley’s Story, October 2024
*As told by: Katy Oakley
Diagnosis received: Episodic Cluster Headache
Symptoms: Stabbing and blinding pain around the eye and temple on one side of the head, restlessness, swelling around the eye, one-sided tearing, eye redness, runny or stuffy nose, eyelid drooping, and facial sweating
Ashley’s journey with cluster headache began at just 18 years old, right as she was starting college. What started as brief, stabbing pains in her head quickly morphed into debilitating cluster headache attacks that would last for hours at a time.
“It was misery,” Ashley recalled. “I would have one attack a day for two weeks. They were blindingly painful… I couldn’t be around people or sit still.”
Despite getting a quick diagnosis from a neurologist, Ashley faced an uphill battle trying to get the proper treatment and support.
Doctors in her new college town dismissed her diagnosis, leaving her to fend for herself during these excruciating attacks.
“Every doctor I went to would just repeat migraine back to me, completely dismissing my actual diagnosis,” Ashley said. “After a while, I just started calling them migraines because that got me [the] help [I needed] faster.”
Over the next several years, Ashley’s cluster headache attacks only worsened. She went from having attacks for two weeks at a time to experiencing up to six attacks per day for months on end. This took a major toll on her ability to work, study, and live a normal life.
“I had to cancel a study abroad trip to Costa Rica twice… I was packing but I was still in [a cluster headache] cycle… nobody–doctors, [my] parents, and the program wanted me to go in the state I was in, so we postponed it,” she said. “I’ve still never been, but headache advocacy has given me the chance to see more of the U.S. and work toward making a difference.”
It wasn’t until 2014, after years of struggling, that Ashley finally found a primary care physician who listened to her and helped her get properly diagnosed [again] and treated. This made a world of difference.
“He was the first doctor in years to look up the treatment guidelines for cluster headaches and prescribe me oxygen,” Ashley said. “I broke down in his office so many times over insurance denials on refills. He went to bat for me every time.”
Ashley’s story is all too common for those living with rare, debilitating headache disorders like cluster headache. Far too often, patients face dismissal, disbelief, and a lack of understanding from the medical community.
But Ashley’s perseverance and advocacy paid off. She has since found ways to manage her condition, including transitioning to a more flexible work-from-home career as a writer, and she remains passionate about supporting others in the headache community.
“Those annual Clusterbusters conferences are such a reset… If I’m able to go, it’s really nice to see other people who have it and are doing more than surviving,” Ashley said.
“It’s amazing how you get to see somebody go from the deepest low one year to thriving the next, including yourself.”
Ashley’s advice to others struggling with cluster headache or other headache disorders is to keep advocating for yourself and building a strong healthcare team.
She shares that no treatment works for everyone, and it takes trial and error and an open mind to find the best way to prevent and stop attacks.
“It all comes down to finding the right [healthcare] providers. You can bring in all the literature that you want to help your doctor understand what you’re going through, but if they’re not open to listening and learning from you because it’s a rare condition, then you’re never going to get the care you need,” she said.
“My big thing [and advice] is just building your healthcare team.”
Disclaimer: This real story was drafted with AI assistance and reviewed for accuracy by the National Headache Foundation.