Trigger Warning: Suicide
I’ve dealt with migraines for most of my life, just like my mother and grandmother. Back then, they were merely severe headaches that could be managed with Tylenol and a day of rest. It wasn’t until my daughter, Lily, was diagnosed with chronic migraines in her teenage years that I learned about the complexities of chronic migraine, hemiplegic migraine, and intractable migraine. Sadly, all three of my children inherited my predisposition to migraines.
Lily was our middle child, with an older sister named Sarah and a younger brother called Jake. She was a vibrant soul, with a personality so radiant that it was impossible not to adore her. With her infectious laughter and captivating smile, she had the ability to brighten any room. A true performer at heart, she loved being in the spotlight, which paradoxically made her struggles with debilitating migraines even more challenging.
Before her condition became chronic, Lily was a social butterfly. She excelled academically, was a cheerleader, and always sought out new adventures with friends. Despite having migraines, they were episodic and didn’t hinder her zest for life. Her primary care physician managed her migraines with preventive medications and triptans, which provided some relief, and she always tried to persevere. Eventually, we were referred to a neurologist after exhausting treatment options, and we spent almost two years under their care before heading to the Mayo Clinic in Minnesota.
That final year was harrowing. Lily endured 82 emergency room visits and spent 72 days hospitalized in an attempt to alleviate her relentless migraine attacks. We explored various treatments, including chiropractic care, acupuncture, and natural remedies, but none offered her any relief. Ironically, as we sought solutions, Lily’s list of comorbid diagnoses grew. Yet, she remained determined to pursue her dream of becoming a nurse, attending college for her freshman year. We hoped that a new environment would be beneficial. While she managed to complete her first year, she ultimately had to withdraw medically during her sophomore year.
I often reflect on how 2010 marked a turning point for her. Lily returned home and enjoyed the time spent with friends on good days, often finding solace in a steady boyfriend who provided a welcome distraction from her pain.
In June 2010, we embarked on a nine-hour journey to the Mayo Clinic, filled with naive hope for a cure. If one of the world’s top medical centers couldn’t help her, who could? After a week of tests and consultations with specialists, we were told to return in October for a six-week outpatient pain clinic to help her learn to cope with her pain. Lily expressed her frustration, stating she wasn’t truly living; she was merely surviving.
Disheartened, we faced a long, silent drive home. Just 20 minutes after arriving, I sensed something was wrong and rushed to her room, discovering her taking a handful of pills. I intervened and called for help, and she was placed on a ventilator for six days. It was a close call, as many of the medications she ingested were muscle relaxers that impacted her heart. That was her first and only suicide attempt, and she vowed never to put me through that again.
Recovery was a challenging journey, but with support from friends and family, she found moments of joy, even if they couldn’t alleviate her pain. We eventually found a wonderful migraine specialist who became a source of hope for her. He treated her with Botox, nerve blocks, and various medications while equipping her with tools to manage her condition at home. Despite severe side effects from some treatments, he never gave up on her.
Lily also struggled with cyclic vomiting syndrome and severe gastroparesis, often leading to intense vomiting episodes that compounded her migraine pain. Most of her medications were administered by injection due to her inability to retain oral medications. Unfortunately, nothing seemed to work, not even the gastric pacemaker designed to improve her digestion.
By this time, it felt like it was just the two of us against the world. Friends who once rallied around her had moved on with their lives, leaving her isolated in a dark room. Her depression deepened. She had been seeing a psychiatrist and psychologist since her diagnosis, but the burden of being bedridden at just 20 weighed heavily on her.
In January 2013, two pivotal events occurred: her compassionate migraine specialist retired, and she discovered an online community of migraine sufferers. This network introduced her to others who understood her plight. However, when we sought help from a new specialist, he told her she’d be wasting her time, claiming there was nothing more he could do for her. This rejection shattered her, and the subsequent visits to specialists who echoed the same sentiment only deepened her despair.
Lily lost her vibrant spirit and withdrew from the world. At 22, being told she had exhausted all options was devastating. We found ourselves back in the hospital where she was often dismissed as a drug seeker, treated with disdain instead of empathy. This neglect from the medical community made it difficult for her to see a way forward.
As her thoughts turned darker, she began expressing suicidal ideations. She would say, “If I were an animal, they would put me down; they wouldn’t allow me to suffer like this.” I feared that without proper medical support, I would lose her—and tragically, that became a reality on June 7, 2013. The system failed her, and the isolation she experienced robbed her of hope.
Today, there’s more awareness and treatment for migraine disorders than ever before. The community is growing, and advocacy efforts are gaining traction, paving the way for advancements in research and treatment. I am encouraged to see many benefiting from new medications, and I am grateful for the dedicated doctors who now advocate alongside us.
I deeply regret not being a stronger advocate for Lily when she needed it most. She held on longer than I ever could, and while I am not angry at her choice, I would give anything to have her back. She was my heart and soul.
The migraine community continues to remember her, and together we fight for better treatments and understanding. We must advocate for research and ensure that effective treatments become accessible to all. Most importantly, we need to raise awareness about the debilitating nature of migraine disorders. Witnessing Lily’s suffering was heartbreaking, and I know countless others endure similar pain.
If you or someone you know is struggling with thoughts of self-harm or suicide, please reach out to a crisis hotline or seek professional help.
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Summary:
This heartfelt piece recounts the struggles of a mother, Emily, as she navigates her daughter Lily’s battle with chronic migraines. Despite seeking help from numerous medical professionals and treatments, Lily faced insurmountable challenges that ultimately led to her tragic passing. The story highlights the importance of advocacy, awareness, and empathy within the medical community, as well as the urgent need for effective treatments for those suffering from debilitating migraine disorders.
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Chronic migraines, migraine treatment, mental health, advocacy, migraine awareness, Lily’s story, Emily Carter, migraine community.