Written by Jennifer McPherson LEGAL A PW for Chronic Migraine Awareness, Inc.
The first time I remember having a migraine attack was in third grade. I was a shy, quiet child so I was nervous about telling the teacher that I didn’t feel well. I was afraid I would make a spectacle of myself. The pain and nausea got so bad, that I finally asked to go to the bathroom. I could hardly see at that point. As I left the classroom, I vomited and passed out in the hall. I’m really glad I didn’t make a spectacle of myself! 😊
I have had migraine (yes, migraine, singular—think of it like “asthma”) for over 40 years—25 of those years has been chronic, (meaning more than 15 attacks per month). Finally, at the age of 30, I went to a neurologist and began my new life as a guinea pig for medicines that don’t work and can have many side effects. I have had several MRIs and lots of blood work, which always come back normal. My doctor and I laugh about it when we go over my yearly physical test results. For someone who is super healthy, I feel pretty bad most of the time. I have spent tens of thousands of dollars (with insurance!) on over 40 different treatments, including migraine surgery. I have been getting Botox injections for five years—30 shots in the face and head every three months! I wonder who thought that was a good idea LOL. Also, for the last seven months, I have been taking the third of the new CGRP medications with some good improvement. CGRP medications are the newest real migraine treatment to come out since triptans were discovered in the 1990s!
I have an collection of “tools” to manage this beast. Neck massagers; scalp massagers; a migraine hat, which is an ice pack you actually wear like a hat—worth every penny! I have “migraine” glasses. I even cover the little lights on the DVD and in the car with small felt dots. People will laugh at me, but every little bit helps! I’m thinking of starting a Tik Tok series to go over the items I have accumulated over the years.
I believe that at this point in my life I have a form of PTSD. Migraine disease is part of my life every single day. Every. Single. Day. I’m constantly wondering about what I’m eating, drinking, what the weather is, how much or how little I’ve slept, how I sit or stand, and my menstrual cycle is the worst. Night driving is terrible; the new LED headlights are physically painful to my eyes. I wish someone would have checked with me before deciding to change them! 😊 The hardest part of this besides the pain, of course, is that there is no end in sight or real cure. So, this could be it for the next 40 years, and that is detrimental to my mental well-being. It is depressing to live with this monster that can surprise at any moment. I like to laugh at the studies that say X% of people with migraine also have depression/anxiety. I MEAN, OF COURSE WE DO! Wouldn’t you?? I do make the best of it. I really appreciate the times when I feel good. I will go out and have as much fun as I can—dinner, dancing, museums, ice cream, the beach! My favorite is live music, and rock concerts are a place where I can de-stress. Thankfully, loud music is not a trigger for me!
I have become a migraine advocate to fight for more research, more funding, more migraine specialists, and hopefully a cure. I went to Washington D.C. in 2019 and 2020 for their annual Headache on the Hill event. Doctors, patients, and other advocates come from all over the country to meet with their senators and representatives to ask for specific things that the migraine community needs. I’m there to share my story. Unless you have had a migraine, it’s impossible to describe how it feels and how it changes your life. But when we are all together, we all understand each other. These are my people! It’s the world’s largest support group! I love the people I have met and look forward to seeing them at the next event!
Migraine is not “just a headache”. It is an invisible illness, which leads some people to think we are faking being sick. On the contrary, I spend most days “faking being well”. Migraine disease is strong, but I am stronger!
I either have a migraine, I am recovering from one, or I am fearfully waiting for the next one.