5 Women Share How They've Battled Their Migraine Diagnosis
"My mom would tell me to take Tylenol but it never did anything."
Too many of us have stories about struggling to access the care we need. Often, health care obstacles are directly tied to medicine's gender bias, as well as stigmas relating to our race, ethnicity, sexuality, gender identity, age, size, income, and condition. In our series Pain Today, we are highlighting these stories through personal and reported essays, hoping to empower each other to advocate for our health in a way that much of the medical community does not.
For well over a decade, I've dealt with migraines. I remember my first one occurring in third grade while I was impatiently waiting for my parents to pick me up from school. I was inside a humid, sticky classroom that had no AC running and it was awful.
While my only headache remedy at the time was being in a dark room, taking Excedrin, using an ice pack, or drinking a Coke, I was finally prescribed Imitrex when I was in college, which changed my life. I no longer was knocked out of commission for a day (or more) every time a migraine set in––I could simply take a pill and move on. But unfortunately, those medications often don't work forever, and, after almost a decade, the effectiveness began to wane. That was the point when I finally made an appointment with a neurologist to do an MRI.
When the results came in, I was eligible to try a monthly shot that was supposed to get rid of the headaches I was experiencing 15 days out of a month. Days after my first Aimovig shot, I found myself going a week without a migraine for the first time in years. And when breakthrough migraines would strike once or twice a month, my neurologist prescribed Eletriptan. But even though these medications helped, I decided to address my migraines in a holistic sense (by incorporating supplements like magnesium into my diet), and finally got them under control.
But even though the above tips worked for me, I became curious about how other women have been dealing with their own migraines. No two migraines are alike and, for every woman, a different remedy, lifestyle modification, or medication might work––or not. So I talked to five women, across ages, cities, and experiences, about their migraine journeys and how they're battling this invisible chronic illness. And remember: make sure to talk with your doctor before trying any of these potential solutions below.
Kelsey — solution: Low-dose beta-blocker and riboflavin vitamin
Kelsey still remembers her first migraine vividly. "I was in high school during tech week of the musical I was in. I had to lay down at home for an hour or two in total darkness with a cold washcloth on my head until I had to be at rehearsal. I took Tylenol and drank a Diet Coke––my mom's trick since she didn't want me to jump straight to Excedrin," she says.
Her mom also suffered from migraines throughout her adulthood, so Kelsey knew what her headaches were from the start. According to the Migraine Research Foundation, 90% of those who suffer from migraines have a family history.
"Ever since that first real migraine, I have clear memories of fighting through concerts, missing a day of a conference for work, puking in the bathroom of a train, walking three miles home instead of battling the lights, sounds, and smells of the subway," she says. Kelsey adds that she has so many memories of having debilitating migraines throughout her life. "There are also so many days where I have a dull headache behind my left eye that I'm just keeping tabs on to see if it's going to turn into a full-blown migraine or fade away with a little medicine or sleep," she explains.
And, it's not just neurologists that do their best to address the cause and cure of migraines. Kelsey has seen primary care physicians, her OB-GYN, acupuncturists, optometrists, and chiropractors, too. For several years, Relpax, taken at the onset of migraines, seemed to help, in addition to an endless stream of more holistic treatments, including using essential oils, CBD, ice packs, and vitamins. But, as many people experience, eventually the medication stopped working. Now, she's successfully managing her migraines with a low dose beta-blocker and riboflavin vitamin that she takes daily, and Rizatriptan as an acute medication.
Like many who used to suffer silently at their desks, work from home over the past year and a half has also offered some solace. She says, "Knowing that I can take medication, nap on the couch, and then wake up and just walk to my desk instead of commuting to the office has meant I don't push through a migraine hoping it goes away instead of resting when I feel it come on."
Diana — solution: BC cherry powder and peppermint oil
Diana, a journalist in New York, has suffered from migraines since childhood. The Migraine Research Foundation states that migraines affect up to 10% of children––and many of them go undiagnosed. Parents don't always know how to address the pain their children are in, particularly if they don't have migraines themselves. In Diana's experience, she says, "My mom would tell me to take a few Tylenol but they never did anything—sleeping it off was the only thing that worked."
After college, she brought up her migraines to a doctor for the first time and found instant relief with a Sumatriptan prescription. She says, "I know it seems crazy to have waited that long but it sort of just felt like there was nothing that could be done since over-the-counter meds never worked." Several years later, the Sumatriptan continues to address her migraines and, when she has less intense headaches, she turns to BC Cherry Powder and peppermint oil.
Katie — solution: Chinese Medicine practices
Maine-based acupuncturist Katie first experienced migraines in childhood, but hers took a different turn by the time she was in college. She began experiencing migraines with auras, which would leave her feeling fuzzy in a sometimes days-long post-drome phase. "They are most often a sensation of my eyes being crossed or brightly colored or a vibrating circle of geometrical lines in my visual field that expands over 30-60 minutes," she explains.
This description can be called an ocular migraine, and, for many, like Katie, it's that startling visual disruption that first prompts some people to visit a doctor for a diagnosis and plan. At the time, she was pursuing her Master's in Acupuncture and Chinese Medicine, which gave her a deeper understanding of what was occurring in her own body. So she set up appointments not only with her primary care doctor but also with an optometrist and a naturopathic doctor.
Katie found that, once the pain set in, nothing helped her migraines beyond Ibuprofen and rest, so prevention was her primary focus. She says, "A combination of diet and lifestyle modification, custom Chinese herbal formulations, and acupuncture has reduced my migraines from weekly occurrences to once a month—or less." For Katie, identifying diet triggers involves keeping a log and conducting evaluations on foods including gluten, dairy, soy sauce, and coffee. When it comes to her lifestyle, she works to reduce stress through yoga, meditation, going on walks, doing gratitude practices, and limiting screen time.
Additionally, she looks to Chinese medicine practices. She says, "In Chinese medicine, the menstrual cycle is very important, so practitioners encourage patients to track it. By doing this, I discovered that I always had a migraine around my period. Between weekly acupuncture treatments and a custom herbal formula, I stopped having migraines." But, like many, the pandemic has reduced her access to many of her stress and anxiety-relieving practices––and her health suffered until she regained control of her routine again, making it clear just how effective her lifestyle modifications have been.
Elizabeth — solution: medication and holistic healing practices
Elizabeth suffered her first migraine three years ago at 49. Prior to that day, she'd rarely even experienced a headache. Then, she was struck with a severe one that caused nausea and dizziness for two days with no relief. Alarmed, she called her primary care physician, who referred her to a neurologist. In the days in between her appointments, she continued to suffer migraine attacks every few days.
An MRI ruled out any serious causes and it was diagnosed as a migraine that was brought on by perimenopause. Without a clear-cut cure, however, she continued to experience near-daily migraines, walking around like a zombie most days, wishing for relief. Her doctors tried Topiramate, a medication used to treat epilepsy, which also has shown success in treating migraines.
However, the migraines did not go away entirely and there were extreme side effects, including tingling fingers, tiredness, and loss of short-term memory––plus, it didn't address the dizziness and nausea she was still experiencing. But that minimal relief did give her the motivation to seek holistic treatment. She returned to her once-frequent hatha yoga practice and explored acupuncture––approaches that were dismissed by one neurologist who told her that her issues were simply mind over matter. Additionally, she went on to visit another neurologist with a newfound determination, "I was prepared to do battle and have every single one of my symptoms addressed and questions answered. I was not getting brushed off again."
Now, Elizabeth says, "For myself, it's a combination of medication, a cocktail of Sumatriptan, Metoclopramide and Naproxen are taken for three days straight when a migraine occurs, and holistic healing, including yoga, meditation, and acupuncture, that has helped to get my migraine to a manageable level."
Anna — solution: a healthy regimented routine
Anna, a radio DJ whose entire job relies on her ability to be "on" every morning––something that could be a nightmare for migraine sufferers—first encountered migraines after experiencing a virus her freshman year of college and missing three weeks of classes. The virus eventually subsided, but debilitating migraines stuck around, striking every few days and causing dizziness and brain fog. A year later, her parents recommended she see a specialist.
A neurologist ran all necessary panels, including bloodwork and an MRI, to rule out any other conditions, and, additionally, had her try a gluten-free diet to eliminate a gluten intolerance as a possible contributing factor. All tests came back clear. However, her migraines hadn't responded to over-the-counter medication and she was put on daily Topomax. While she still suffered from breakthrough migraines and headaches, they happened infrequently––and she was able to resume her normal life.
Then, in 2017, she noticed that the migraines had practically disappeared and, along with her doctor, she made the decision to taper off the Topomax. She's now been off the medication entirely for three years and has experienced only a handful of migraines during the years since.
When Anna looks back on her time living with migraines and tries to assess why she no longer deals with them, she attributes the positive impact a post-college schedule had on her routine. She goes to bed early due to her morning radio job, gets plenty of sleep, and eats healthily. Migraines are sometimes attributed to a disruption in a routine and Anna is fortunate that her lifestyle now follows a structured day-to-day schedule––and her body has responded positively.