STRENGTH IN EVERY STORY™
A 25-Year Journey with Cluster Headache
Bob’s Story, July 2024
*As told by: Katy Oakley
Diagnosis received: Cluster headache
Symptoms: Slight twinge around the temple, Confusion, Pressure that builds up in the head that increases slowly, Pressure on the temple area, Pressure down the side of the face, Pressure on the jawline and lower teeth, Anxiety, Pain on top and on the back of the head, Shoulder pain, Head pain and tightness that last from the start to the end of a cluster cycle
Bob’s story is a powerful testament to the challenges and triumphs of living with the debilitating condition of cluster headache.
For the past 25 years, Bob has been at the forefront of the cluster headache community, advocating for increased research, awareness, and better treatment options. His unwavering dedication to supporting others with this often-misunderstood condition is truly inspiring.
As Bob reflected, “It’s been really frustrating in the last 25 years to be understood. One of the problems with having clusters is it’s very isolating.” This sense of isolation is a common experience for those living with cluster headache, as the condition is often misunderstood and minimized by those who have not experienced it firsthand.
Bob’s journey with cluster headache began in his mid-20s, when the condition dramatically changed the course of his life. Over the next two decades, he tried an astounding 70 different medications and hundreds of combinations, with little relief. Cluster headache attacks, which can be excruciatingly painful and disabling, became a constant companion, with Bob experiencing cycles that lasted up to three months, half of every year.
“Half of every year I was in a cluster headache cycle,” Bob recalled. “It was very isolating. After a couple of years of trying to explain ourselves to people, we kind of give up even trying to explain what it is that we’re going through.”
In the early days, Bob struggled to find healthcare providers who understood the unique nature of cluster headache. He was often misdiagnosed with sinus infections and other conditions and even had dental extractions in a futile attempt to alleviate his symptoms.
It wasn’t until he visited the Diamond Headache Clinic that he finally received the proper diagnosis of cluster headache, a revelation that came within just 10 minutes of seeing a headache specialist.
As Bob noted, “I went four years being told that I had
sinus infections and all sorts of things. Nobody really knew what it was that I had until I finally went to Diamond and they diagnosed me within 10 minutes.”
Frustrated by the lack of understanding and resources available for cluster headache patients, Bob took matters into his own hands. He formed Clusterbusters, a pioneering organization dedicated to increasing research, education, and awareness around this rare and debilitating condition.
Through Clusterbusters, Bob has worked tirelessly to forge partnerships with leading medical institutions, headache organizations, and advocacy groups, all with the goal of improving the lives of those affected by cluster headache.
“I formed Clusterbusters to increase research and trying to get some awareness built around Clusters. Also, educating doctors on cluster headaches because very few doctors knew anything about it,” Bob explained.
One of Bob’s most significant achievements has been his work in educating healthcare providers about the unique needs and experiences of cluster headache patients.
He has presented at conferences, collaborated with researchers, and developed diagnostic tools to help ensure that individuals with cluster headache receive the proper diagnosis and treatment.
Bob’s efforts have been instrumental in bridging the gap between the medical community and the cluster headache community, ensuring that more patients receive the care and support they desperately need.
*Disclaimer: This real story was drafted with AI assistance and reviewed for accuracy by the National Headache Foundation.