(Part Three of a Three Part Series About Growing Up with Migraine)

I have suffered a long time with migraine. But lately, science has come a long way with treating migraine. After 30+ years living with migraine disease, I finally had success with Gepant medications for migraine. (Gepants attack CGRP in your brain. CGRP is released during migraine attacks, causing inflammation and pain. Gepants bind to CGRP receptors and prevent it from activating, reducing pain and inflammation.) Ever since I've been on these medications, my brain fog, brain function, memory and problem-solving skills have all drastically improved. Having my brain back gives me power that I never have wielded as an adult. I can make arguments with my care, have the proper tools to not only help myself, but others as well. I now feel like a complete adult that can combine her intellect and trauma and become one hell of an advocate.

I have spent over 3 decades living in the neurological storm that is migraine disease. I have developed C-PTSD with medical trauma. My self-confidence was nowhere to be seen for almost 30 years. The doctors were successful with their medical gas lighting and I blamed myself for most of my life. The medical trauma I've gone through scares me enough to not look for a better neurologist. That scared girl has now evolved into a strong warrior that is beyond done with being taken advantage of. I refuse to be helpless and hopeless.

Honestly, I've done a ton of unlearning things these past 5 years or so. My entire life I have made myself smaller to make others more comfortable. I literally have to work on my posture and stand tall now because of making myself smaller has started to take a toll on my spine. I have begun the long journey of learning to love myself. I used to be very mean and unforgiving to myself. I forced myself to have self-talk like I was talking to someone I loved, instead of myself. Would you say that to your mother? No. Say to yourself what you would say to her. It was a very uneasy feeling, being nice to myself, but it worked. I now make sure I am heard, seen and respected. I know I am worthy of someone's time and attention. Migraine doesn't make me any less of a person. I'm actually stronger because of migraine. It just took me 30 years to realize it. Strength not only in resilience, but strength in empathy. I am always looking for those people barely hanging on. I am constantly trying to see from someone else's point of view, stand up for others that may not be able to do so for themselves. I have turned my pain and trauma into something beautiful. It wasn't easy. It takes hard mental work, every day. But damn is it worth it.

I have taken a deep breath of freedom and I have a deep desire in me to help others with migraine. To spread hope. I've joined the Alliance For Headache Disorders Advocacy and participated in Headache on the Hill in Fall 2024. Me and other migraine advocates from Missouri talked to our Congresspeople about legislative asks for those with migraine and headache disorders. We got people to sign onto bills that would help those with migraine and headache disorders in Missouri. I've obviously joined Migraine At School to help advocate as well. My school years would have been so much easier if I had someone at my school that understood migraine and didn't riddle a young girl into shame. Migraine at School can impact real change to young Americans. As of this year, I am also a community leader for Shades for Migraine, a social media awareness campaign led by The Association of Migraine Disorders. They encourage people to show their support for the one billion people living with migraine disease worldwide by posting selfies wearing sunglasses. I know what it is like to live in darkness for years, no one understanding you. I have to reach those people. They have to know they are not alone and there is hope.

I'm not going to sit here and act like my life is wonderful now, or that I have it together. I still can have bad Hemiplegic Migraine attacks. I still mentally unravel and react too quickly, full of emotion. I'm sure that will be a life-long battle. I still have my C-PTSD, anxiety, etc. But I now am better equipped to deal with migraine and advocating for myself in healthcare. I was raised in the flames of disbelief. All those years of people not believing me, tearing me down, have prepared me for something big in life. What it is, I don't know. But I am determined to spread my light to every dark corner that a migraine warrior may be surviving. I no longer blame myself for migraine. I am just living with a neurological disease that science hasn't caught up to yet. Migraine doesn't make me weak. It makes me uniquely strong. Never give up. Reach out to an online migraine community if you have to. You are not alone. You are worth the fight.

This blog was written by Cynthia Cooper, a Migraine at School Ambassador.

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