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Miriam Edelstein's Advocacy Story

Miriam Edelstein’s Advocacy Story

Miriam Edelstein’s advocacy story is written and told by Miriam Edelstein and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

Miriam Edelstein’s Advocacy Story

When I was 18, my life changed forever. Out of nowhere, I developed a pain in my head that I had never felt before. Later, I found out this was called a migraine. When I started my migraine, I started seeing a neurologist when I was in college. We exhausted all medication and treatment options. I even underwent tests such as a spinal tap and MRIs. 

My college experience was shaping out to be very different than most. I didn’t go out on weekends because I knew I had to get to bed by 10:30 or else I’d wake up with a migraine. I would go to bed anxious every night that I would wake up sick with a headache. At that point, I couldn’t leave my house without my small bag of headache medicine. I had my professors’ numbers saved so that I could text them when I could not make class or rehearsal because I was in bed. 

Things took a turn for the worse when I started going to the emergency room for my migraines. 2016 was not a great year. I could count my ER visits on both hands. While working at a sleepaway camp that summer I got to my breaking point. I called my parents and said if we didn’t find a doctor to help me, I could not attend college in the Fall. My neurologist didn’t know how else to help me and I needed another opinion. In August 2016, my life changed again. 

Miriam Edelstein’s Advocacy Story Changes

My uncle read about Neurologist and headache specialist Dr. James Charles in the newspaper and sent my parents the article. I knew I had to get an appointment. The first time I met Dr. Charles, he sat with me for so long, going over my complete migraine history. He listened to me, I felt heard, and I knew he was going to help me. After diagnosing me with chronic migraine, he sent me to Holy Name Medical Center for a migraine infusion treatment and I began to live my life again. My migraines didn’t control my life anymore.

Dr. Charles gave me my life back. Migraine disease can’t be cured – I know that. There have been many times since 2016 that I have gone through bad times with my migraines, but every time Dr. Charles and his incredible staff have been there to help me. Since August 2016, I have traveled to other countries, I graduated college with a music education degree, I started a master’s program, I have laughed, cried, and I have stayed up past 10:30 pm again. 

Miriam Finds Gratitude

I am so grateful to my wonderful parents. I would not have gotten through my migraine journey without their support. To my parents – thank you from the bottom of my heart for being there for me, I love you. I am forever thankful to Dr. Charles and his incredible staff, who gave me my life back and taught me how to live with migraines without letting them control me.

To everyone who lives with migraine disease – each migraine will pass and you will get out of the dark room. We need to share our stories so that you know there are other people out there who suffer from them too. You are not alone.

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Tell your Advocacy Story

Do you have an advocacy story to tell like Miriam Edelstein’s Advocacy Story? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event.

Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.


Are you inspired by these advocacy stories and want to donate to  Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.


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