Never letting her pain go to waste, she advocates for the community.
Katie Golden, 36, is a writer, blogger, and advocate for people with chronic migraine and pain. While she never pictured this type of life for herself, Katie has come to embrace it, choosing to live a fulfilled, meaningful life despite the daily pain and challenges that come from living with chronic migraine disease.
At the age of five, Katie experienced her first migraine with an aura. Immediately, her parents and doctors took action. She went to a neurologist who assisted her family with coping skills and treatment options.
Through early childhood, her migraine disease was more sporadic. She had a year without one; then she had a migraine every week in the 4th grade. On average, it would be a migraine every few months. By junior high, she started taking triptans, which helped her tremendously at the time.
Although she was cognizant of migraine, her disease never dictated her life. In high school, Katie was active. She was a self-proclaimed theatre nerd, spending most of her time at the community theatre or rehearsal for choral groups. Migraine attacks occasionally impacted her vocal training, but rarely sidelined her performances. She would, however, experience “letdown” migraine attacks after the pressure of performing was gone.
Katie worked full-time in the banking industry while earning her business degree part-time. She thrived in her career, focusing on commercial real estate finance in the D.C. metro area—and then life came to a screeching halt following a trip to California in 2011 with her boyfriend, Archer.
A Life-changing Trip
Once home from her trip, Katie had what she believed to be a horrific but temporary migraine—but it never ended. Unable to get out of bed or function, she had to take two months off work. Fortunately, she was able to to see a renowned headache specialist at Georgetown University Hospital. At the age of 30, Katie was diagnosed with chronic migraine disease.
Every moment of every day, Katie deals with some level of head pain. In a typical day, her pain starts at a three and spikes up to a six or seven, forcing her to sleep away the pain. Thirty minutes or three hours later, she emerges to deal with the rest of the day.
Her head pain is typically worse at night, making sleep difficult. She describes her pain as “being hit upside the head with a board, over and over again.”
On a good day, it’s a dull ache that crescendos into a stabbing pain behind her eyes and her left temple. The pain radiates down into her neck and shoulder muscles. She says she lives like a vampire, with the blinds drawn and very little overhead lighting.
Identifying her migraine triggers has not been easy for her either. “I’ve tried changing my diet, written volumes of headache journals, detoxed from all medication (not recommended!), been tested for allergies and have decided that the fact that I breathe is my biggest trigger!” she jokes.
For two years, she valiantly pressed on. Her employer was great: “They made every accommodation they could to assist me,” she says. “I could work from home, take days off—whatever I needed, they provided.” But in 2013, it became too much. “It just wasn’t fair to my colleagues or my clients,” says Katie. A brief stint on short-term disability soon turned to long-term. Katie got an attorney, and within five months of applying, received social security and Medicare benefits.
“I never knew migraine could last all the time,” says Katie. “I kept thinking I could figure this out. It can’t last forever. But it has.” She now has changed her focus from finding “that cure” to learning how to manage the pain and get through each day while feeling productive.
Innately positive, Katie always kept a mainly sunny disposition about her life. That was why it was more jolting to others when she didn’t have the energy or strength to leave bed for nearly two years.
Thankfully, her support system never wavered, nurturing her during the hard times while also finding ways to push her to get back into life.
Archer was instrumental in picking her up. “I remember him telling me that I would not get better lying in bed,” shares Katie. “He said he saw me, understood the pain I was going through, but also knew I need to get up and get out.”
Katie listened. She got a trainer to motivate her. It took time, but slowly she began building up her stamina and strength. In 2016, she ran her first 5k for Miles for Migraine.
In the past three decades, Katie has tried a multitude of medications and treatment therapies. Through trial and error, she has found what works (taking preventatives, dihydroergotamine (DHE), rotating through abortive medications, and yoga) and what doesn’t (electrical stimulation, acupuncture, and physical therapy).
While Katie has Botox every three months, what has brought the most significant relief is undergoing 5-day ketamine infusions twice a year. “This has been life-changing for me,” she says. “My pain levels drop nearly in half for three to six months.”
Believing people should blend self-healing measures and medication, Katie stretches throughout the day and tries to be mindful of how far to push her body. Her favorite thing to do is beach-side yoga.
I learned the hard way that you cannot just rely on medication… You need to utilize other tools to help yourself, too.
Adult coloring has become one of her pastimes. Her pain is the highest at night; in order to calm down, she focuses on something else. “I will sit, watch TV, and color. It is a great distraction from the pain.”
Katie also looks for ways to redefine her life and worth. It was important for her to be productive and find a purpose again. Her aha moment occurred at the end of 2013 while reading Migraine.com.
“I thought, ‘I could write for this!’” she exclaims. “I wrote three articles, submitted them to the general email, and waited for a response. They reached out to me saying they liked my perspective. Since then, I have been contributing to their site!”
Never Let Your Pain Go to Waste
Living by the motto “Never let your pain go to waste,” Katie turned her pain into something positive which, in turn, led to acceptance. It pushed her to become involved.
For three years, she has attended Headache on the Hill, an annual lobbying event in Washington, D.C., focused on improving awareness and increasing research for headache disorders. Besides writing for Migraine.com, Katie contributes pieces to NationalPainReport.com—and she recently started her own blog. “GoldenGraine.com gives me another outlet to share experiences and thoughts with others on how to live a fulfilled life with chronic migraine and pain,” says Katie.
Katie chooses not to let life pass her by. “So many people feel stuck by pain,” she says. “The fear of the next attack is debilitating. I am a social person and not willing to miss out.”
Source of Support
Katie carefully chooses where to spend the little energy she has. A great night out with friends might mean the next day will be brutal; that’s a sacrifice she is willing to make. “I still want to live and have a semi-normal life.”
That said, there are times when she just can’t make an event. The best way for her to communicate with loved ones is by using the analogy of “The Spoon Theory” (by Christine Miserandino of ButYouDontLookSick.com). Now, instead of having to explain why she is unable to make a function, she simply says, “I don’t have the spoons for that right now,” and her friends understand.
When it comes to family, Katie’s parents and brother have been amazing. “They were my first advocates and have been through it all with me,” says Katie. “I know how to advocate because of them.” Then there is Archer, the man she met 10 months before being diagnosed with chronic migraine. Katie knows he could easily have bailed, but he didn’t. “He is my biggest fan, cheerleader, and support team. I honestly don’t know where he came from, but I sure am lucky,” she gushes.
One topic that they discussed early on (before chronic migraine) was children. “This is a hard conversation to have because there is no right or wrong answer,” says Katie. “We both love kids, but neither wanted our own; I just do not think I could physically handle the responsibility of caring for them. And I am OK with that.” Luckily, Archer feels the same.
Looking to the Future
For those newly diagnosed, Katie recommends seeing a headache specialist—neurologists who spent an additional year to study headache disorders. While there are only around 500 in the country and often have long waiting lists, the knowledge and help they provide is extremely valuable.
Currently, Katie’s hope lies in the groundbreaking Stage 3 trials of four different calcitonin gene-related peptides (CGRP) medications that have shown promise. There has never been a drug produced for the prevention of migraine attacks, she says: “These would be the first, and many are hopeful they will bring us great relief in the future.”
Katie Golden is a pain warrior, using her life with migraine disease to make the world better. Honest and compassionate, she is living each day with purpose. Changing the stigma surrounding migraine must begin with those fighting the disease daily. “We are our own best advocates. We must get involved,” she says.
“My latest goal is to be able to find a yoga studio to work on my handstand,” says Katie. “Is that smart for my head? I don’t know, probably not. However, it is something I personally want to achieve. Migraine isn’t going to take me away from living out my dreams.”
- American Headache and Migraine Association: ahmaishope.net
- Golden Graine: goldengraine.com
- Headache on the Hill: allianceforheadacheadvocacy.org/headache-on-the-hill/
- Migraine.com: migraine.com
- Miles for Migraine: milesformigraine.org
- National Pain Report: nationalpainreport.com
- The Spoon Theory: butyoudontlooksick.com/category/the-spoon-theory/