STRENGTH IN EVERY STORY™
James’ Story, September 2025
As told by: Sophia Ibrahim
Diagnosis received: Episodic cluster headache
Symptoms: Droopy, red and watery left eye, nasal congestion, ice-pick stabbing pain in the eye, hot and cold flashes, vomiting
A deer suddenly crossed the road on a quiet evening in Massachusetts while James drove. He had no idea that moment would change the course of his life. The impact caused severe whiplash, though he never struck his head. A scan later revealed he had sustained “a severe concussion,” and in the months that followed, James began to experience sharp, unrelenting pain behind his left eye. The pain was so severe that over-the-counter remedies did not help.
“I was confused,” he said. “I didn’t hit my head. They told me my brain probably hit the front of my skull from the force of the whiplash.” After several days of feeling unwell, he went to the emergency room. James saw at least 3 doctors and finally, a neurologist in LA ruled out a brain tumor and finally gave a name to what he was experiencing: cluster headache attacks.
Learning What It Means to Be "Unlucky"
For the next eleven years, James managed attacks without a clear path forward. “One neurologist told me I was one of the unlucky ones who got diagnosed with this,” he recalled. “I did feel unlucky… [it] probably wasn’t the greatest way to put it, but it made me realize, yeah, you’re not going to find a lot of people like this.” Although this was an initial shock to hear, eventually James was in luck again. “I feel lucky I found the [cluster headache] community because without it, I wouldn’t have done anything [about my situation]… I’m glad someone told me what it [the condition] was.”
At first, he had two active cycles each year. Recently, the pattern shifted to one: “I seem to just get them in November, right when Daylight Savings hits.” The attacks are excruciating. “They’re ten out of tens,” he said, and they almost always strike on his left side.
He can feel them coming: first the hot flashes, then the nasal congestion, and swelling under his left eye. “The best way I can describe it is an ice pick being rammed from the inside of my eye and out… I start feeling that pain from the side and then I can feel it work its way into my eye. It’s just this stabbing, throbbing pain that will not go away…”
A Pain Few Understand
“People are telling me, ‘Suck it up. It’s not bad,’” James said. “I don’t know how to explain the worst pain I’ve ever felt in my life to someone where they get it. [They say] ‘oh, I have migraines,’ I’m like ‘it’s not what this is. It’s totally different. It’s totally separate, but I still feel for you’.”
Even his doctor admitted she didn’t know much about cluster headache attacks. Because James is otherwise healthy, he has struggled to get oxygen therapy approved, a first-line, evidence-based treatment for cluster headache. “When you see me not in my cycle… I look like a totally fine person,” he said. “But going into them it’s totally different – like [a] Dr. Jekyll and Mr. Hyde feel, where I’m happy-go-lucky, everything’s great, and then I go into a really dark place for those 3-4 months when I get the clusters.”
Finding Relief and Support
Over time, James has discovered small ways to make each attack more tolerable. Alternating heat and cold helps ease the pressure, and his mother’s observation became one of his most effective coping tools. “She started throwing this weighted blanket over me and for some reason it really helped calm my body down…”
At work, he’s learned to advocate for himself. “The best way to do it is just be honest with people at work. Let them know what you’re going through…,” he said. “You’ve got to advocate for yourself… if you don’t speak up for yourself… it [getting the care you need] just doesn’t happen, unfortunately.”
The Turning Point
James’s breakthrough came when his mother found Clusterbusters, a non-profit organization that supports people with cluster headache and encouraged him to attend their annual conference. “Everything I honestly needed to hear made me feel so much better,” he said. “Almost like I’m not crazy and it’s not in my head.”
He describes those three days as transformative. “It was the best therapy I’ve ever done in my life,” he said. Meeting others who truly understood gave him hope, and connecting with clinicians who specialize in cluster headache helped him finally access care. “… the validation, [knowing] I’m not crazy. This is a great community, everyone understands it, did a lot for me.”
Living with Openness
“It stinks to sound that vulnerable, and some people will never get it,” James said. “But to do yourself better, it’s best to be upfront. You will find people that do understand and will care enough about you.”
Sharing his experience has become a way for James to help others. His mother even recorded him during one of his attacks to help relatives understand the reality of his pain. “It’s a tough thing to be vulnerable so people [can] understand it,” he said. “But going to the conference and hearing people get up there and tell their story – you’re like, ‘okay, this is real.’ I don’t have to feel ashamed.”
Looking Ahead
Now out of cycle, James is focusing on gratitude and giving back to the community that changed his life. “The support of my family and loved ones keeps me going and gives me hope that I can overcome this chronic illness one day,” he said. He plans to attend the Clusterbusters conference each year and continue spreading awareness so that others can find help sooner.
“It’s the first time I’ve met others with the same chronic illness. I’ve never felt more validated and understood in my life and I cannot thank them enough for hosting these events…,” he reflected. “Talking about things like this is not easy, so be respectful and kind when someone is vulnerable enough to share about their illness.”
Learn more about high-flow oxygen treatment therapy for cluster headache: