Local residents lobby for improvements to headache care
Whitefish resident Nicole Christianson vividly remembers the first time she experienced a cycle of cluster headaches in 2014, when the pain of the attack led her to believe something had ruptured in her brain.
The sensation was enough to land her in the emergency room, where she would return multiple times in the following days. Officials eventually referred her to a neurologist who, after multiple MRI and CT scans, diagnosed her as having cluster headaches.
The American Migraine Foundation defines cluster headaches as a very severe headache disorder with attacks typically lasting from 30 to 180 minutes, and often peak rapidly. The headaches are usually characterized by one-sided pain that is centered over one eye, one temple or the forehead.
The Migraine Foundation describes it as “one of the most painful conditions known to mankind,” affecting one to two people in every 1,000. There is medicine available to help with the pain of attacks, but there is no one-size-fits-all for those suffering from cluster headaches.
“It is nothing short of completely debilitating,” Christianson said.
Cluster headaches impact many aspects of Christianson’s life. She says her business, Harmony Cleaning, has taken a clientele hit in recent years at the expense of the disorder.
“It’s been difficult to grow my business and I like what I do, and I love my clients, but I’ve had to drastically cut back,” Christianson said. “It has taken a toll on my whole livelihood.”
Christianson said throughout the years, the rarity of cluster headaches have isolated her from much of the community. But two years ago, she found relief in John Bebee, a Libby resident who also suffers from attacks. The two say one another have been instrumental in helping them recover from some of their worst cluster headache cycles.
“It’s nice to have someone to talk to who you can relate to about your day if you suffered from an attack,” Bebee said. “Most people can’t understand what it’s like to suffer through one of these.”
Bebee’s and Christianson’s conditions recently prompted a trip to Washington D.C., where they represented Montana as constituents at the 12th annual Headache on the Hill — a two-day event in which headache patients, providers and advocates gathered to lobby for better access to care for headache disorders.
The event was organized by the Alliance for headache Disorders Advocacy, an organization dedicated to advocacy efforts that can result in better treatment for all patients with headache disorders. More than 150 advocates from 46 states attended the event.
Bebee and Christianson were the only two to attend from Montana. While at the event, the two met with Montana officials and representatives including Rep. Greg Gianforte and Sen. Jon Tester.
Among many things, those who attend the event push for more funding for migraine research medicine, which is considered to be severely underfunded by organizations, including the American Migraine Foundation.
Christianson, who attended the event in 2017 and 2018, said just getting to D.C. is a challenge for those suffering from cluster headaches. She said the changes in pressure when flying can trigger a cycle and is something many people aren’t willing to risk.
Regardless, she said both her and Bebee thought the risk was worth the potential reward.
“I wouldn’t put myself through the stress of traveling and filling out applications and budgeting to get there if I didn’t believe we were making progress,” Christianson said.
The two plan on continuing to represent Montana at future Headache on the Hill events and hope that others suffering in the state will consider joining in on the efforts in coming years.
“I know there are people in and around the valley with cluster headaches, and I want them to know they are not alone and there are a few others around and we are always willing to chat with them,” Christianson said. “If your headache treatments aren’t working, don’t lose hope.”
Reporter Kianna Gardner can be reached at 758-4439 or kgardner@dailyinterlake.com