STRENGTH IN STORIES™
Holding Onto Joy Through Hardship
Hope’s Story, October 2024
As told by Valerie Stevens, Edited by Fabiola Palomo
Diagnosis received: chronic migraine, intractable migraine
Symptoms: head pain
From identifying hormonal triggers that contributed to her pain to navigating a lifetime of treatment, Hope shares her journey of resilience and finding balance while living with migraine. Hope first encountered headache attacks in her late teens, finding it rather unusual as the condition ran deep in her family. What started as occasional tension-type headache attacks soon became a relentless pain after she began taking oral contraceptives at 18 years old. Though stopping the medication initially brought momentary relief, her migraine attacks returned years later, revealing a complex connection between hormones and her condition.
It took trials and errors, medical consultations, and lifestyle adjustments before Hope received a proper diagnosis and found a treatment that worked.
“To live is so startling, it leaves little time for anything else.”
Hope loves this quote by Emily Dickinson because it speaks to living with migraine. The poet also shares her birthday.
Hope didn’t have an easy childhood growing up. She and her siblings were pastors’ kids, which meant a lot of moving around. Her mom was a schoolteacher, and there wasn’t a lot of money on hand. It was a stressful time.
As a kid, Hope dealt with tension headache, which could last up to 2 hours. Hope’s headache attacks were run-of-the-mill until she started using oral contraceptives at age 18. A few months into using the pill, she started experiencing raging headache attacks.
During this time, she took a gap year from college while living with her grandparents and was referred to a chiropractor, thinking it could stop her headache attacks, but nothing helped. A year later, Hope stopped taking birth control pills, and her attacks disappeared.
At 25 and married, Hope started taking birth control pills again, and her symptoms returned. This time, she began to realize that the medication was a trigger and that her attacks were closely tied to her menstrual cycle. Hoping to find relief, she stopped taking the pill, but the attacks remained.
By her late 20s, even though Hope didn’t experience attacks during either of her two pregnancies, the attacks returned post-partum, prompting her to visit a neurologist. The neurologist suspected that the birth control pills “pulled the trigger” and diagnosed her with general migraine without aura.
Until then, her condition had been dismissed as “bad headaches.” During perimenopause, her diagnosis progressed to chronic migraine, and she was later diagnosed with intractable migraine after multiple hospitalizations. Following menopause, the frequency of her attacks varied–some months she experienced 10-15 headache days a month, while other months, she had none throughout the year.
Hope’s “trigger” can be traced through her family history of headache disorders. Hope’s father had migraine attacks throughout his life and remembers him going into a dark room and lying down before returning to his church duties, “He was a preacher and would move to different parishes; his life was stressful.”
Her maternal grandmother, who she fondly remembers as a “tough little lady,” lived with excruciating headache attacks in her 30s and 40s, and both of Hope’s sisters had episodic migraine disease. Hope’s two sons also began experiencing episodic migraine in their teens, though not as frequently as she did.
When her children were babies, Hope’s attacks were so severe that she often had to lie on the floor. She could sense a migraine was coming when she felt pain on the right side of her head. Some attacks have been so severe that she remained in bed for 3 days, suffering from head pain. In desperation, she would pull her hair for relief and recalls, “The pain was so bad you want to put a bullet in your head.”
There were many nights when Hope had to call a friend in the middle of the night to take her to the ER. During these visits to the ER or urgent care, she was given a drug cocktail that eased her pain. However, on one occasion at an urgent care visit, the staff refused to give her any pain medication, believing she was drug-seeking.
Early in her headache journey, Hope was prescribed a triptan, which greatly reduced her attacks, “Then it fizzled,” shares Hope, as the medication lost its effectiveness. Later, she was prescribed pain medication – “It was the only thing that worked... Headaches, pain, and pressure wears you down,” Hope explains.
For the last 3 years, Hope’s been on a CGRP. Seasonal changes bring on “headachy” symptoms but no full-blown migraine. “I worry the CGRP won’t work after a time.” Until then, she views it as a game changer.
Her migraine attacks have drastically reduced from 10-15, to once a month or 3-5 migraine attacks a year, which may last 2-3 days, “Some last a few days, rating a level 3. I can still go about my business.”
Once a year, Hope currently visits a headache clinic affiliated with the University of Rochester Medical Center, where she receives ketorolac (toradol), a nonsteroidal anti-inflammatory drug injection, and a 7-day course of corticosteroid (prednisone) to manage severe flare-ups. While Hope’s treatment is effective, she knows it’s not enough. “You have to do all the lifestyle things, or you’re in trouble. Don’t skip meals, hydrate.” Exercising is another essential tool for minimizing migraine attacks, along with meditation to reduce her head pain.
Hope firmly believes your mindset is important to navigating life, “[I] don’t have time for ‘all of the woe is me’ [talk],” she says. However, Hope also acknowledges the challenges of living with a painful, invisible disease like migraine, “Know you’re not alone, this is a real thing.”
To manage her pain, Hope practices meditation as a tool for relief, “During a headache, I imagine the nerves in my head opening up as a blossom – release, [then] I tune into my body [and acknowledge the] pain.” For the past 10 years, regular massages have been an essential part of her routine, helping to reduce inflammation and alleviate discomfort.
With the support of her CGRP treatment, Hope is able to embrace life more fully. She cherishes the laughter of her grandchild, enjoys working around her home, and thrives in the company of her creative friends. Her love for the outdoors is another source of joy, especially when walking the Finger Lakes Trail with her supportive husband. As Hope puts it, “Every day is a gift.”