Trigger warning: suicide
I have a long history of migraines, as did my mother and grandmother. In those days, they felt like just bad headaches that could be soothed with Tylenol and a day of rest. I was unfamiliar with terms like chronic migraine, hemiplegic migraine, or intractable migraine until my daughter, Emily, was diagnosed in her teenage years. Sadly, all three of my children inherited this debilitating condition.
Emily was our middle child, with an older sister, Sarah, and a younger brother, Jack. She possessed a unique spirit; her personality was so vibrant that it drew people to her. Always the life of the party, she had a knack for making others laugh and could brighten any room with her infectious smile. Yet, she also embraced the role of a drama queen, which only intensified her struggles once she began suffering from chronic migraines.
Before her condition turned chronic, Emily was well-liked and academically gifted. She was a cheerleader, enjoyed spending time with friends, and was always ready for a new adventure. Though migraines were part of her life, they never hindered her youthful exuberance. During high school, her primary care doctor managed her migraines with preventive treatments and triptans, which occasionally worked, and she made every effort to persevere. Eventually, when her doctor ran out of options, he referred us to a neurologist who treated her for nearly two years before sending us to the Mayo Clinic in Minnesota.
In her last year of high school, Emily experienced an astounding 82 emergency room visits and spent 72 days hospitalized in attempts to alleviate her migraine suffering. She explored various treatments, including chiropractic care, acupuncture, and even natural remedies, but relief eluded her. As we fought harder, more complex diagnoses piled on top of her migraines. Still, she clung to her dream of becoming a nurse and began her freshman year of college, hoping a new environment and new friends would boost her spirits. Although she completed her first year, she ultimately had to medically withdraw during her sophomore year.
I often say that 2010 marked the decline of Emily’s well-being. She returned home and spent her good days with friends and a steady boyfriend who provided a welcome distraction from her pain. In June of that year, we embarked on a nine-hour journey to Mayo Clinic, holding onto hope that this esteemed institution could offer a solution. After a week of tests and consultations, we learned that there were no new treatment options. Instead, we were advised to return in October for a six-week outpatient pain management program. Emily expressed to the doctor that she wasn’t truly living; she was merely surviving.
Disappointment doesn’t capture the depth of our feelings. If one of the world’s leading clinics had no solutions, where could we turn next? The ride home was long and somber. Just moments after we arrived, I sensed something was wrong and rushed to her room, only to find her taking a handful of pills. I intervened and called for help, and she was admitted to the hospital, placed on a ventilator for six days. It was a harrowing experience, as many of the medications she had taken were muscle relaxants that posed serious risks to her heart. That was her first and only suicide attempt. She vowed never to forget the look in my eyes when she awoke and promised never to put me through that again.
Emily’s road to recovery was long, but friends and family rallied around her, offering support during her darkest moments. While they couldn’t alleviate her pain, they provided companionship and laughter on her better days. We eventually found a remarkable migraine specialist who reignited her hope. He became a grandfatherly figure to her, available around the clock. He introduced her to Botox, nerve blocks, and countless medications, equipping her with strategies to manage her pain at home. He never gave up on her, even when she faced severe side effects from the treatments.
However, Emily also dealt with cyclic vomiting syndrome and severe gastroparesis, which meant she could vomit up to 20 times a day, making her migraines even worse. Many of her medications had to be administered via injection since she struggled to keep oral medications down. Sadly, nothing worked. The gastric pacemaker implanted to assist her digestion and curb the vomiting failed to bring relief.
At this point, it felt like it was just the two of us against the world. Her once-supportive friends drifted away, living their lives as typical 20-year-olds, while she remained confined to a dark, quiet room. Her depression intensified. She had been seeing mental health professionals for years, but it was hard for a 20-year-old to be bedridden while watching friends move forward.
My oldest daughter, Sarah, misinterpreted Emily’s struggles as her being a “drama queen” who was avoiding work or school. My husband took over most parenting and household duties, as Emily became my full-time focus. The strain this placed on our family was immense. Sarah began to experience migraines herself and struggled with guilt about her previous judgments. Jack was still quite young and engaged in sports and friendships, so he adapted to the situation more easily.
In January 2013, two pivotal events occurred: Emily’s wonderful migraine specialist retired, and she discovered the online migraine community. Until then, we had no idea there were others suffering as she was. She connected with countless individuals who truly understood her pain, offering support and advice during her darkest hours. They were there to keep her company when her pain and insomnia robbed her of sleep.
When her specialist retired, he referred her to a well-known migraine expert near Chicago. We attended an appointment filled with hope, but after reviewing her medical history, he told her it would be a waste of time and money as he couldn’t help. Desperate, she pleaded with him, “I will try anything, just please help me!” He responded, “I’m sorry,” and walked away. Emily was left devastated, and we were escorted out the back to avoid alarming other patients.
On the way home, she expressed how painful it felt to hear a doctor say there was nothing more to be done. This would mark the beginning of a series of rejections from four specialists and clinics over the next five months, all echoing the same sentiment: Emily had exhausted all options. Each refusal chipped away at her spirit, and the vibrant personality we once knew began to fade.
At 22, hearing that there was nothing left to try was devastating. We found ourselves back in hospitals and emergency rooms, where she was often treated with skepticism. Medical professionals sometimes regarded her as a drug seeker and showed her little compassion, which only added to her struggles. Her only requests were for Zofran and fluids to combat her relentless vomiting, but even that was often denied.
It was during this period that Emily began voicing thoughts of suicide. She would say, “If I were an animal, they would put me down. They wouldn’t let me suffer like this.” I feared that if we couldn’t find a doctor willing to take her case, I would lose her — and that fear became a reality on June 7, 2013. The medical community failed her, and the isolation from peers her age extinguished any remaining hope she had for a normal, pain-free existence.
Today, we have more hope and treatment options for migraines than ever before. The migraine community is expanding, and advocacy efforts are gaining momentum, leading to increased research and new treatments. It’s heartening to witness so many individuals responding to the latest medications. We now have dedicated doctors fighting alongside us, amplifying our voices so that we can no longer settle for inadequate care or dismissive attitudes from healthcare professionals.
In hindsight, I wish I had found my voice sooner to advocate for Emily’s needs. She endured far longer than I could have. While I will never be angry with her choice, I would give anything to have her back. She was my heart and soul.
We lacked the treatments available today, and I was unaware of the incredible doctors I’ve since met through advocacy in this community that means so much to me. Many have asked why I remain so passionate about fighting for migraine awareness and a cure after losing Emily. To this day, the migraine community honors her memory and stands by me in this fight.
I want to see effective treatments and a cure in my lifetime. We have lost countless individuals in the migraine community, and many others are still hanging on by a thread. They deserve hope. By advocating for research and new treatments, we can help more people reclaim their lives. Unfortunately, many still experience neglect from the medical community. Insurance companies need to provide access to treatments that are currently out of reach without a struggle.
Most importantly, I want to raise awareness about the debilitating nature of migraine and headache disorders. I have witnessed firsthand the immense suffering Emily endured, and it was heartbreaking to be unable to relieve her pain. I now know there are millions suffering as she did, and we must educate those who have never experienced such pain to understand that it is real and not merely an invisible illness, as many assume.
If you are feeling suicidal, thinking about hurting yourself, or are concerned that someone you know may be in danger of hurting themselves, please reach out for help. You can contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or the Suicide Hotline at 1-800-SUICIDE (1-800-784-2433), both staffed by certified crisis response professionals, or call 911.
This article originally appeared on the Association of Migraine Disorders website.
For more insights on fertility journeys, check out this article. For expert advice on artificial insemination, visit Make a Mom. Additionally, March of Dimes is an excellent resource for pregnancy and home insemination information.
Search Queries:
- Understanding chronic migraines
- Coping with debilitating headaches
- Support for migraine sufferers
- Migraine advocacy and awareness
- Treatment options for chronic migraines
Summary:
The narrative recounts a mother’s heart-wrenching experience with her daughter’s battle against chronic migraines, illustrating the profound impact on their family. Emily’s struggles with migraines led to numerous hospital visits and ultimately culminated in her tragic suicide. This poignant story highlights the urgent need for better treatment options and understanding of migraine disorders, advocating for increased awareness and support for those affected by these debilitating conditions.