There are few organizations dedicated specifically to patients who suffer from cluster headaches. Eileen Brewer and Andrew Cleminshaw of Clusterbusters discuss how their group helps speak out for those who might be unable to, themselves.

Despite the many treatments and cures that have been developed and improved over the course of medical history, not much has changed for those living with cluster headache. This is something that one group, Clusterbusters, is well aware of—and actively working to fight back against.

“There’s text that goes back through history that may have been an early description of cluster headache,” says Andrew Cleminshaw, Clusterbusters treasurer and a patient with cluster headache. “You hear about people who had lobotomies—how many people who had a lobotomy were actually just in an unbelievable amount of pain from cluster headaches?”

Clusterbusters is a group dedicated to helping patients with cluster headache. Its mission is to educate, advocate and provide support for those living with this invisible condition. By speaking up for those who are unable to do so themselves, Clusterbusters hopes to increase support for those living with cluster headache.

Where it all started

Before becoming a formal patient advocacy group, Clusterbusters started out as an online cluster headache support group and message board. Patients with cluster headache would discuss treatments they were trying and share their results with the rest of the members.

One member, Bob Wold, would eventually formalize the group, becoming the president of Clusterbusters. Wold, himself a patient with cluster headache, is revered by his colleagues for his knowledge and his commitment to helping others. Cleminshaw notes that Wold still answers phone calls at all hours of the night from people who found his phone number in old YouTube videos and are desperate for help.

“He’s this singular asset…he really is the backbone of Clusterbusters. He’s an incredible guy.” says Eileen Brewer, Clusterbusters vice president.

What it does

According to Cleminshaw, Clusterbusters’ mission can be summed up in three parts: to educate, advocate and provide support. They work to educate a range of people, from friends and family to medical professionals and the employers of patients with cluster headache—not to mention patients themselves. Clusterbusters also heads to Washington, D.C., for its annual Headache on the Hill trip, where it speaks directly with representatives about increasing awareness around and funding for this disease. This is one of the main efforts the group undertakes in order to advocate for patients and work toward achieving necessary change.

Improving access to treatment

Cleminshaw and Brewer both say that part of the group’s overall goal is to improve access to treatment. While there has yet to be a cure for this condition, there have been several means of treatment explored that patients have seen success in using.

Compressed oxygen is one of these treatments. While both Brewer and Cleminshaw point out that patients have found success in aborting cluster attacks with compressed oxygen, this form of treatment is not widely covered by insurance.

According to Brewer, most patients with access to oxygen and who know how to use it properly can easily abort an attack within 10-15 minutes. But she highlights that most people don’t have access to oxygen, and even if they do, there isn’t always enough understanding around this treatment to properly prescribe it.

Raising awareness

One of the biggest issues facing Clusterbusters—and patients with cluster headache—is the lack of awareness. This not only goes for the general public, but also for the medical community. Brewer and Cleminshaw both note that of the mountain of information one is exposed to in medical school, there is very little if any time spent going over cluster headache—and what is learned quickly falls to the bottom of the pile. This lack of understanding among professionals can potentially lead to instances of misdiagnosis.

“I think that’s what we hear about from the medical community the most: that there’s just a lack of awareness, and not a willful lack of awareness—they want to know about it, but they just never learned about it,” Cleminshaw says.

Similarly frustrating are the reactions that patients with cluster headache get from skeptics. Cleminshaw notes that the “almost unbelievable amount of pain” can come and go within an hour—but that doesn’t mean the person is faking it.

“These people would be the best actors in the world if they were faking it,” she says of patients with cluster headache.

Speaking for those who can’t

Brewer says that Clusterbusters’ biggest accomplishment is the number of people they’ve helped—and saved. Both she and Cleminshaw note an increased risk of suicide among patients with cluster headache.

“We’ve had patients with this disease who have been stabbed and shot, and people that have had babies or had limbs amputated,” Cleminshaw says. “Universally, every single person ranked cluster headaches as more severely painful than their other extremely severe experiences.”

But despite suffering from this debilitating disease, Cleminshaw and Brewer both say that those with cluster headache are some of the kindest and most tenacious people they’ve ever met. “Working with cluster headache patients has been my favorite thing to do, ever,” Brewer says. “Despite the fact that they live with this, they are the most spirited, exciting and fun people to be around, and they’re inspiring. When they’re not having an attack, these people are full of life. They’re just trying to live in those moments in between.”

To learn more about cluster headache, visit the Clusterbusters website or the American Migraine Foundation Resource Library.