Woman advocates for headache research

When Nicole Christianson is in a cycle of cluster headaches the pain is debilitating.

“If feels like someone takes an ice cream scoop with serrated edges and slams it into my eye socket trying to scrape my eye from my skull,” she says. “It also feels like someone takes a hunting knife with a gutting hook and repeatedly slams it into the top of my head twisting and pulling it out.”

This feeling can often happen eight times per day around the same time each day and lasts about an hour.

Christianson, 29, was diagnosed by a neurologist in 2014 as having cluster headaches.

According to the Mayo Clinic, cluster headaches occur in patterns and are marked by frequent attacks that can last from weeks to months followed by remission periods. The intense headaches are often situated around one eye and may radiate around the face.

Christianson, who lives in Whitefish, recently attended Headache on the Hill in Washington, D.C. The annual lobbying event is organized by the Alliance for Headache Disorders Advocacy, a group of nonprofit organizations that advocates for the health of patients with headache disorders. She attended a number of events during the two-day event and met with Sen. Jon Tester and representatives from the offices of Sen. Steve Daines and former Rep. Ryan Zinke.

Christianson attended on a grant from Cluster Busters, an organization dedicated to researching and promoting the treatment of cluster headaches. She said the experience made her want to do even more to advocate for people like herself and insist that more funding needs to go toward medical research targeted at headaches.

“All I want to do is find an end to the pain and there’s no way to do that without research into better pain management,” she said.

For Christianson conventional pain medications — from over the counter to migraine medications and opioids — don’t work to control her pain. She’s also tried a number of medications designed for other diseases — anti-seizure and heart medications and steroids — in an attempt to control the headaches, but none have worked and always left her with unwanted side effects. Many cluster headache patients find relief only in illegal psychedelic mushrooms.

Oxygen, which isn’t covered by her insurance, can help stop a headache after it has started and exercise can bring some relief. Christianson has had brief — only up to a month of time — periods of remission. Each time she suffers a headache she is left screaming in agony or forced to pace the room searching for some distraction from the pain.

“My biggest fear is not death because that would mean relief,” she said.

Headache disorders include migraine disease, cluster headaches, chronic daily headache, new daily persistent headache and tension-type headaches, according to the Alliance for Headache Disorders Advocacy. Each year during the event in Washington, D.C. the group brings health professionals, migraine advocates and patients themselves to unite on requests of Congress typically focused around improving awareness about the impact of headache disorders and in turn impacting the available research funding.

This year’s Headache on the Hill included 93 participants from 33 states. One of their requests to Congress was an increase in funding by the National Institute of Health for pain research claiming that safe and effective therapies could reduce pain, opioid abuse and national deficit.

During the event, Christianson told her personal story as a way to advocate for herself and others who are suffering. She was the sole participant from Montana, and said she’d like to see other patients and medical professionals from her home state participate. While she praises her own neurologist for helping her through the battle of cluster headaches, she’s also quick to point out that there are no neurologists in the state who are specifically certified to deal with headache disorders listed by either the United Council for Neurologic Subspecialties or the National Headache Foundation.

“It was gut-wrenching to share what I’ve been through,” she said. “It was nice to see other people who are advocates trying to help.”

Headache disorders are the most prevalent neurological disorders, affecting more than 90 percent of all Americans, according to the AHDA, and cause more than 1 percent of all disability and 9 percent of all lost labor in the U.S. every year.

Christianson has seen cluster headaches alter her life in many ways. A number of things can trigger a cycle of headaches — the wrong fragrance, cleaners, certain foods, alcohol or stress.

She used to work in traffic control in construction, but she can no longer hold down a regular job.

“I’m not reliable,” she says, noting she began her own cleaning business so she could set her schedule.

She met her boyfriend, Kyle Hackett, while both were working for separate construction companies during the reconstruction of the Going-to-the-Sun Road in Glacier National Park. This was before her diagnosis and while Christianson said her boyfriend is supportive she worries the stress will be too much for their relationship as he watches her suffer.

Travel is almost impossible because she needs to carry oxygen to combat the attacks. She’s has had to cancel or leave early from many social and family events.

“I have to plan my day around when I’m not having headaches,” she said. “Even when I’m not having one, afterward my face is tender or feels like it’s bruised to the touch.”

Christianson said attending Headache on the Hill gave her encouragement by being around others who understand, but it wasn’t all that long ago that she researched moving to right to die states fearing that she may have no other escape.

She wants to continue doing the things she enjoys, like hiking, going to hockey games, gardening and playing the role of aunt.

“I am desperate for longterm, affordable, and effective treatment,” she said. “I want to work, I want to go to school, I want to enjoy my family and friends and life. Right now, my life is revolved around just getting by and a constant battle to keep my pain at ease.”

For more information, visit http://allianceforheadacheadvocacy.org/