STRENGTH IN EVERY STORY™
A Relentless Desire to Learn about Cluster Headache
Jon’s Story, November 2024
As told by Valerie Stevens, Edited by Fabiola Palomo
Diagnosis received: Cluster headache, Lymphoma
Symptoms: Tooth pain, Unilateral head pain, Head sweating, Nasal congestion, Runny nose, Pinpoint pupils, Droopy eyelid
Jon’s hearty, infectious laugh and upbeat outlook hide the many years he lived with debilitating cluster headache. Jon, a retired food scientist has been in remission from cluster headache for 2 ½ years. While he’s thankful the headache attacks have stopped, he remains unsure of the reason behind their disappearance.
Jon’s headache journey began with what he initially thought was a toothache. At 25, he developed severe pain in his tooth. After enduring it for a year, he visited his dentist, requesting its removal. However, after further examination, the dentist confirmed the tooth was healthy and suspected the pain was caused by a headache, with pain traveling to his tooth. Over the next year, Jon suffered from severe headache attacks, which would later be diagnosed as cluster headache four years later.
Cluster headache is an extremely painful type of headache occurring in periods of frequent attacks known as clusters, that may last from weeks to months. Once Jon was diagnosed, he was angry that he had the disease. He also realized there were two options: one to deal with it, or the second option to give up. The latter was non-negotiable, “I was determined! I refused to let it defeat me! It’s an attitude, I’m not going to let this get to me,” shared Jon.
This determination led Jon to sneak into medical libraries to read about headache, “It was pathetic, there was little information.” One doctor told him early in his treatment that he would outgrow his headache pain, “That was a lot of baloney.” Jon tried to hide his pain from others. His friends, family, and coworkers were supportive, but it was upsetting for them to witness the attacks.
During his worst attacks, his friends would want to call 911; they were frightened and frustrated, and some would cry because they couldn’t help. Journeying through eight headache specialists, plus various medicines, a glimmer of hope came in 1985. Jon read an article in the National Headache Foundation’s HeadWise™ Magazine, now podcast, discussing how oxygen was a successful treatment for cluster headache.
Jon’s neurologist, his ninth, was open to trying oxygen. She wrote the prescription; it changed his life. Once on oxygen, his cluster headache attacks were well managed. Jon’s routine was to have oxygen in his home, car, and at work, while also drinking extremely strong coffee or energy drinks once they came on the market. Jon’s headache attacks were managed successfully from 27 – 58 years of age.
Although Jon’s headache attacks were managed, attending concerts or meeting friends for a drink was limited. “You never know when a headache would hit. I didn’t want to be that far from my oxygen,” said Jon. Jon focused on his 31-year career as a food scientist with the same company and never missed a workday.
Jon is unsure what led to his remission. However, over the 7+ years, he quit smoking, underwent lymphoma treatment, retired, changed his diet, cut caffeine, used tamsulosin, and aged—all potential factors.
Now, Jon only has “shadows”, his word used to describe vague headache attacks. They reach a pain level of 1 or 2, making them less painful than cluster headache.
Retired and headache–free, volunteering brings Jon joy. “Volunteering kept me young,” says Jon. Once retired, Jon volunteered with Meals on Wheels, taking seniors to their appointments. “I’ve had a hell of a good time helping others.” Jon belongs to 5 Facebook headache groups; he gives back to others because “We’re a family.”
Jon’s tips for anyone starting their cluster headache journey include the following:
- Have a strategic plan. It is important to understand triggers, tracking headache cycles, maintaining prescriptions (even between cycles), carrying abortive medication, and keeping key people informed, including family, supervisors, HR, and physicians.
- Use the proper tools to make a significant difference. Through research and support from advocacy groups like the NHF and Cluster Headache Community Discussion groups, Jon learned about the “tools” he needed to manage his cluster cycles. Through such groups, Jon found that oxygen, energy drinks, triptans, and various other medications and alternative treatments were helpful in managing the disease.
- Build a resilient attitude. Jon’s personal mantra is: “This isn’t gonna kill me, I refuse to let it derail my life, job, and career. I’m going to live between the hits.” His message to others facing similar circumstances is simple yet powerful: “I know it’s hard, but you must keep fighting.”