Trigger warning: suicide
I have suffered from migraines for as long as I can remember, just as my mother and grandmother did. Back then, they were nothing more than severe headaches that could be managed with Tylenol and a day of rest. I had no idea that chronic migraines, hemiplegic migraines, or intractable migraines even existed until my daughter, Sophie, received her diagnosis in her teenage years. Sadly, all of my children inherited my migraine condition.
Sophie was our middle child, with an older sister, Ava, and a younger brother, Jack. She was truly one of a kind, with a vibrant personality that drew everyone to her. Her infectious laughter and radiant smile could brighten any room. She had a flair for the dramatic and thrived on being the center of attention, which only made her struggle with migraines more challenging.
Before her condition became chronic, Sophie was thriving. She excelled in academics, cheered for her school team, and enjoyed countless adventures with her friends. Her energy and zest for life were evident, and she was always surrounded by people who adored her.
While migraines were a part of her life, they didn’t prevent her from enjoying it. Her doctor managed her episodes with preventative medications and triptans, which sometimes worked. However, as her condition worsened, we were referred to a neurologist. After almost two years of treatments that failed to bring relief, we sought help at the renowned Mayo Clinic in Minnesota.
That last year was a whirlwind of emergency room visits—82, to be exact—and 72 days spent in the hospital, all in attempts to alleviate her relentless migraines. Despite trying various treatments, including chiropractic care and acupuncture, Sophie was still in agony. The more we sought solutions, the more complications arose.
Sophie’s dream of becoming a nurse never faded, and she started college, believing a new environment would help. Although she completed her first year, she had to withdraw medically during her sophomore year.
In June 2010, we embarked on a hopeful journey to the Mayo Clinic, believing a place of such repute would provide answers. After numerous tests and consultations, we were told to return for a six-week outpatient pain management program. The neurologist’s words struck Sophie deeply: “You’re not living; you’re just surviving.”
Our disappointment was profound. If the Mayo Clinic could offer no new treatment options, where could we turn? The drive home was filled with despair. Moments after arriving, I sensed something was wrong and rushed to her room, only to find her attempting to take her own life. Thankfully, I intervened, and she was hospitalized for six days, placed on a ventilator. That was her first and only suicide attempt, a moment she vowed never to repeat.
It was a long road to recovery, but her friends and family rallied around her. While they couldn’t take her pain away, they offered support and laughter on her better days. We eventually found an incredible migraine specialist who was dedicated to finding solutions. He became a grandfatherly figure to her, tirelessly trying various treatments, including Botox and nerve blocks.
Despite his efforts, Sophie struggled with additional conditions, including cyclic vomiting syndrome, which compounded her suffering. Many medications had to be administered by injection due to her inability to keep oral medications down. Nothing seemed to work, not even the gastric pacemaker intended to alleviate her digestive issues.
As time passed, it felt increasingly like just the two of us against the world. Friends who once provided support began to drift away, embracing their 20s while Sophie remained confined to a dark room. Her depression deepened, and despite years of therapy, she felt isolated and trapped.
In January 2013, two significant events occurred: her beloved migraine specialist retired, and she discovered an online community of migraine sufferers. This virtual support group provided her with a sense of belonging and understanding that had been missing.
However, when she sought help from another well-known specialist, the response was disheartening. After reviewing her extensive treatment history, he dismissed her case as “too complicated.” Hearing those words devastated her. Over the next five months, she faced similar rejection from three other specialists, each time feeling more hopeless.
Soon, Sophie lost her spark and withdrew from the world. It was heartbreaking to witness a once-vibrant young woman become a shadow of herself. Back in and out of hospitals, she was often treated poorly, dismissed as a drug seeker. The medical community failed her, and her isolation led to an increase in suicidal thoughts.
On June 7, 2013, I lost my daughter to this relentless battle. The medical system had let her down, and the loneliness she faced was unbearable.
Today, the landscape for migraine treatment is slowly improving, with more awareness, research, and advocacy efforts emerging. New medications are being developed, and the migraine community is growing stronger. I wish I had known how to better advocate for Sophie during her struggles. I have become an advocate for migraine awareness and treatment in her memory, hoping to bring hope to those still suffering.
I want the world to understand the debilitating nature of migraine disorders. Watching Sophie suffer was excruciating, and I know there are countless others enduring similar pain. We must raise awareness and demand better treatment options for all migraine sufferers.
If you or someone you know is struggling with suicidal thoughts, please reach out for help. Resources like the National Suicide Prevention Lifeline are available to provide support.
This article was originally published on Dec. 18, 2020.
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Summary:
The article shares a poignant account of a mother’s experience with her daughter Sophie, who struggled with chronic migraines leading to her tragic loss. It highlights the challenges faced by those suffering from debilitating migraines and the need for improved treatment and understanding within the medical community. The narrative emphasizes the importance of advocacy and support for migraine sufferers and calls for greater awareness of their struggles.