STRENGTH IN STORIES™
Rising After the Fall
Katy’s Story, March 2025
As told to: Katy Oakley
Diagnosis received: Intractable chronic post-traumatic headache, Intractable chronic migraine, NDPH (new daily persistent headache), Depression, Anxiety
Symptoms: head pain, nausea, suicidal ideation, fatigue, brain fog, neck stiffness, neck pain, scalp sensitivity, difficulty reading, lightheadedness, sensitivity to light, sensitivity to sound
Katy’s life took a drastic turn after a biking accident left her with persistent headache and migraine attacks. What started as a simple ride turned into a years-long struggle to find relief, navigating a maze of doctors, treatments, and setbacks.
From enduring the frustrations of Step Therapy to battling the mental toll of chronic pain, Katy’s journey led her to a headache clinic, where she finally found effective treatment and a renewed sense of hope. Now, years later, she dedicates her work to advocacy and education, ensuring others with headache disorders feel seen, heard, and supported.
The Accident
About ten years ago, Divvy Bikes launched in Chicago, offering an easy way to rent bicycles for short rides. I was eager to incorporate more movement into my daily routine, and biking to and from work seemed like the perfect solution. My plan was simple: try it out for a week before committing to a membership and buying a helmet. That week ended abruptly with an accident.
My accident happened on December 16, 2014. It wasn’t dramatic—I didn’t collide with a car or another cyclist. My front tire got stuck between the street and the dip in the sidewalk. The bike stopped, and I was flung to the ground, landing directly on my head. I wasn’t wearing a helmet.
When I regained consciousness, two men hovered over me. Their accents and concerned expressions are etched in my memory as they urged me to go to the hospital. At 26, working for a nonprofit, I worried about the cost of an ambulance ride and refused their advice. Hours later, I found myself in the ER with a debilitating headache and nausea.
The Hunt for a Cure
The tests showed no structural damage, but the aftermath was anything but normal. For two years, I pleaded with healthcare providers to find something—anything—to make the pain stop. I longed for a cure, to feel like myself again.
I underwent x-rays, CT scans, MRIs, and sleep studies. I sought help from MDs, PAs, chiropractors, acupuncturists, massage therapists, sleep doctors, physical therapists, three neurologists, and even a neurosurgeon. Despite their efforts, relief was fleeting. My daily migraine and headache attacks ranged from a 7 to 11 on the pain scale. I swallowed more than eight pills a day, each with unpleasant side effects, just to pretend I could function.
On my worst days, I debated whether enduring the lights, noise, and long waits at the hospital was worth it. My doctors urged patience as I cycled through prescriptions, most of which were antiseizure or antidepressant medications that didn’t work. It wasn’t until years later that I learned about the cruel system of Step Therapy, which forces patients to try lower-cost drugs before being allowed access to more effective, expensive options. This ‘cost savings’ process kept me (and to this day millions of others) in unnecessary pain for far too long.
I became so desperate I convinced a provider to prescribe a pain reliever. I regret it to this day. The temporary relief from opioids* came at a steep price: rebound headache attacks and withdrawal symptoms that brought the most excruciating pain of my life.
The Impact of Chronic Pain on Mental Health
Chronic pain seeped into every part of my life. I was a shell of myself, calling in sick or struggling through work. Some days, showering and dressing felt like running a marathon. I isolated myself, rarely seeing friends, or family. When I did attend social events, it would take me days to bounce back. Despite their thoughtful care packages, videos, and cards, the loneliness was crushing.
My therapist noticed the toll it was taking. The daily struggle led to severe depression, anxiety, and suicidal thoughts. She became so concerned for my safety that she issued an ultimatum: either take short-term disability to focus on my mental health and headache, or she’d admit me to the hospital.
In that pivotal session, with her sitting beside me, I messaged my boss to announce an immediate leave of absence. I enrolled in an Intensive Outpatient Program (IOP), dedicating nine hours a week to understanding how chronic pain had impacted every facet of my life. At first, I resented my therapist, feeling as though she doubted my pain. It felt invalidating to hear that I needed to focus on mental health when I felt so strongly that if the headache and migraine attacks disappeared, my mental health struggles would follow suit.
I’m grateful the program helped me see the connection between my body, mind, and well-being. Through the IOP, I found a community of people who understood the feelings of being misunderstood, overwhelmed, and exhausted. Their strength inspired me, and their stories stayed with me.
A New Path to Relief
With renewed determination during my leave, I decided to try the world-renowned Diamond Headache Clinic in Chicago, despite warnings about long wait times. I couldn’t believe it when the receptionist told me there was a cancellation—they could see me that week. Tears of relief streamed down my face.
When I entered the exam room, a nurse asked, “Do these lights bother you? Would you like me to dim them?” It was the first time I felt truly seen. My dad and I exchanged a glance, both realizing this experience would be different. From the receptionist to the nurses, everyone seemed to understand the harsh realities of living with chronic headache.
Minutes later, Dr. Alexander Feoktistov, known by his patients as “Dr. Alex”, a neurologist board-certified in Headache Medicine, entered the room. He asked more questions about my headache and migraine attacks than I thought possible. Since I had tried so many different treatment options, he said I qualified for their inpatient hospitalization program. There, I’d receive IV infusions, learn biofeedback techniques, and attend optional classes and support groups. I was shocked such a comprehensive program existed.
Experiencing Pain Relief
In December 2015, I was admitted and began treatment. The treatment was not easy, but the nurses and doctors were the kindest I’ve ever met. Though I’ve forgotten their names, their compassion remains unforgettable. For the first time in over a year, I experienced what it was like to be headache and migraine-free again. It gave me the hope I desperately needed.
After ten days living in the hospital, my attacks reduced significantly. I wasn’t cured, but I left with a daily preventative regimen, effective emergency medications, and a trusted medical team.
Through regular appointments, my headache team continued to support me, tweaking treatments and introducing me to botulinum toxin injections. The staff were always kind and patient as the procedure gave me incredible anxiety.
In 2016, I experienced my first pain-free days, filling me with immense gratitude and hope.
A Fresh Start
As I slowly regained my life, I realized how precious and unpredictable it is. Health is something that I took for granted, and I was determined not to let it go to waste. I also felt that my entire identity had become tied into being sick. I desperately wanted a fresh start.
I made the bold decision to follow my dream of living abroad and applied for a work visa in Australia. Navigating a new healthcare system, transferring medical records, and finding a neurologist were challenges, but the fresh start was worth it. I made friends, traveled, and embraced life fully.
Giving Back
Ten years later, my life has come full circle. I am grateful that my headache and migraine is well managed, and I live a full life. Working at the National Headache Foundation allows me to give back to the community that supported me. My hope is to help others through education on new treatment options, advocating for policy change (especially Step Therapy), increasing access to care, reducing stigma, and sharing stories like mine.
To everyone living with headache and migraine: you are not alone. There are people who believe you and want to help.
Disclaimer: The use of opioids is not recommended for the treatment of headache disorders or migraine disease. Evidence suggests they may be ineffective and carry significant risks of medication overuse headache and dependance. (American Headache Society, 2019)
If you are experiencing headache or migraine attacks, consult a healthcare provider to work closely with a migraine specialist to develop a personalized treatment plan.