Trigger Warning: Suicide
I have always experienced migraines, just like my mother and grandmother. Back then, they were merely bad headaches that could be managed with Tylenol and a day of rest. It wasn’t until my daughter, Lily, was diagnosed in her teenage years that I learned about chronic migraines, hemiplegic migraines, and intractable migraines. Sadly, all three of my children inherited the migraine condition.
Lily was our middle child, with an older sister named Chloe and a younger brother named Oliver. She possessed a unique spirit; her vibrant personality made it impossible not to adore her. With her infectious laughter and radiant smile, she had a remarkable ability to brighten any room. She was also a bit of a drama queen, craving the spotlight, which made her struggle with migraines all the more challenging.
Before her condition became chronic, Lily was incredibly popular. She excelled academically, was a cheerleader, and loved spending time with friends, always seeking adventure. Although migraines were a part of her life, she managed to live fully during her episodic phases. Her primary care physician prescribed preventative medications and triptans, which sometimes worked, allowing her to push through. However, when those options ran out, we were referred to our first neurologist, who worked with her for nearly two years before directing us to the Mayo Clinic in Minnesota.
In that final year, Lily had 82 emergency room visits and spent 72 days hospitalized, desperately trying to break the cycle of her migraine attacks. During this time, she explored chiropractic treatments, acupuncture, and various natural therapies, but relief remained elusive. The harder we fought, the more comorbid conditions seemed to develop. Despite her pain, Lily held on to her dream of becoming a nurse and started her freshman year of college, hoping a new environment would help.
I often say that 2010 marked the beginning of her decline. After moving back home, she spent her good days with friends and a steady boyfriend, finding moments of distraction from her pain. In June of that year, we made the arduous nine-hour trip to the Mayo Clinic, filled with hope that a world-class facility could offer a solution. After a week of tests and consultations, we were told to return in October for a six-week outpatient pain clinic, as they had no new treatment options. Lily expressed her frustration, stating she wasn’t living—just surviving.
The disappointment was profound. If one of the best clinics couldn’t provide help, where could we turn? The journey home felt unbearably long. Just 20 minutes after arriving, I sensed something was wrong and rushed to her room, where I found her taking a handful of pills. I stopped her and called 911, leading to her hospitalization and a six-day stay on a ventilator. It was a terrifying time, but she promised she would never forget that moment and would never put me through that again.
Lily faced a long road to recovery, supported by friends and family who couldn’t take her pain away but could offer comfort and laughter on her better days. Eventually, we found an exceptional migraine specialist who provided her with hope. He became a father figure, available around the clock. He tried Botox, nerve blocks, and various medications while equipping her with tools to manage her condition at home. His persistence meant the world to her.
However, Lily also suffered from cyclic vomiting syndrome and severe gastroparesis, leading to debilitating vomiting episodes. Many medications had to be administered by injection, as oral medications often made her sick. Despite our combined efforts, nothing seemed to work, not even the gastric pacemaker implanted to help her digestion.
As time passed, it became increasingly isolating for Lily. Friends drifted away, living their lives while she remained confined to a dark room, battling deepening depression. My oldest daughter struggled to understand, while my husband took on most household responsibilities as I became consumed with Lily’s care. The stress began to fracture our family dynamics.
In January 2013, two significant events occurred: Lily’s wonderful migraine specialist retired, and she discovered an online migraine community. For the first time, she connected with others who understood her struggle, providing camaraderie and support. Yet, when we sought help from new specialists, Lily faced repeated rejections. One doctor told her she would be wasting her time as her case was “too complicated.” With each dismissal, a piece of her spirit faded away.
By the time she was 22, Lily had lost her vibrant personality and withdrawn from the world. It was heartbreaking to witness her suffering, and the medical community’s failure to acknowledge her pain only deepened her despair. In June 2013, she expressed her thoughts on suicide, leading me to fear for her life. Tragically, on June 7, 2013, we lost her.
Today, we have more hope and treatment options for migraines than ever before. The advocacy community is growing, and I am committed to fighting for a cure in Lily’s memory. I know there are many still suffering, and I want to provide them with hope. We need to continue advocating for research and better access to treatments, ensuring that the medical community understands the true impact of migraine disorders. It’s crucial that we validate the experiences of those who suffer, as I witnessed firsthand the toll it took on Lily.
If you are feeling suicidal or know someone who may be in danger, 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).
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Summary:
This heartfelt account reflects on the struggles of a mother, Sarah, who details her daughter Lily’s battle with chronic migraines. Despite various treatments and medical interventions, Lily faced immense challenges, leading to feelings of despair and isolation. The narrative emphasizes the urgent need for better understanding and treatment of migraine disorders and advocates for those who suffer from them, while also providing resources for support and information.
Keyphrase: Chronic migraines and their impact
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