Chronic Migraine is a vicious disease. It’s so much more than JUST a headache. It’s pain that can’t be touched by excendrin migraine or any amount of ibuprofen. It’s a neurological mis-firing between circuits in your brain. It’s agonizing, nauseating, tear-inducing pain. And when you tag “chronic” to the front of that – you have an entire host of life-changing decisions to make.
I’m navigating life with a diagnosis of chronic migraine, but it wasn’t always that way. I developed my first headache on December 10, 2017. I thought it was due to stress because I was finishing up the first semester of my Junior Year and exams were fast-approaching, plus I was recovering from having had shingles just 4-6 weeks earlier. But that same type of headache kept appearing day after day after day…it wasn’t preventing me from living my life but it sure was making it hard to enjoy it!
The medical bills began to pile up as I saw specialist after specialist and had every scan in the book! God bless my grace-filled parents who so generously helped me out! Things got increasingly debilitating and I was eventually hospitalized for almost 2 weeks to try to conquer and manage the intense pain. Nothing seemed to work – not even IV treatments of DHE every 6 hours (my fellow migraineurs know what that stuff is, but for those of you that don’t, it’s a drug notorious for knocking out migraines as if they’re a sandcastle built by a toddler!) A lumbar puncture that I had while hospitalized revealed that my CSF pressure was high – much to everyone’s surprise!
It was at that point that I was diagnosed with Intracranial Hypertension. To be honest, I was thankful for a diagnosis – no matter how terrible it may have been. To have a name, a way to label my pain, was a relief. And so, at that point doctors began pumping me full of diuretic medications and injections of all sorts. But still, nothing seemed to help the pain. Plus now I was having SEVERE GI issues with include (but weren’t limited too), bleeding, vomiting, along with fainting, dehydration, dizziness, etc. I was navigating this physical battle alongside my senior year of college AND planning an out of state wedding. Looking bad, I literally have no idea how I managed to make it through all of that. It was literally an act of God that I made it to the other side of those painful, brutal months.
After many months of failed medication pain-management and few more lumbar punctures – all which came out on the high side of the normal range, the dreaded words arose: brain surgery.
I’M SORRY, HOLD UP – WHAT?!
Before I was letting ANYONE cut into my head (to be very vulnerable and honest, I was mostly afraid of them having to shave my head before my wedding – even throughout pain, vanity is still present ha), I decided to get a second opinion so I reached out to Johns Hopkins in Baltimore, MD. I figured if the leading hospital that’s known to have the best neurologist and neuro surgeons in the country can’t fix it – then who else could?!
So, add to that list: senior year of college, medical mystery that’s making existing very difficult, planning an out of state wedding, and now…flying to and from Baltimore every 4-6 weeks.
But I wouldn’t have traded that experience for the world. The doctors at Johns Hopkins were, and continue to be, so thorough and validating of my pain/symptoms. They are genuine, caring, and attentive – it was the first time in my life that I’d had that experience with ANY doctor outside of my primary care physician.
Johns Hopkins didn’t agree with the diagnosis and ordered repeated scans, testing, and…a dreaded lumbar puncture. So, in July of 2019 (after my wedding – thank goodness!!) I went there with my parents for a few days of multiple tests and tons of prayer surrounding me. Here is something I wrote while boarding the plane that day:
This is where my heart breaks a little bit. I thank God for the fire that I’m walking through because without it, I would still be a solid block of metal – cold, hard, with pointy, sharp, cutting corners. The fire is scorching and almost always painful – though the type of burn is constantly changing, but God is molding me and making me into someone and something that I don’t recognize…in the best ways possible. This is a very terrifying process for a human like myself who needs to always have a plan, who strives to always be in control of situations. But nevertheless, I am so grateful for this process, no matter how painful, and I’m grateful that I have a Savior who loves me enough to accept me as I am (but who also refuses to leave me that way.)
This grace…what a wild, unimaginable, mind-boggling concept for us as a fallen human race drenched in endless amounts of sin that threatens to drown us. I once read a statement – I’m not sure who it’s from – that said, “It’s not falling in the water that drowns us. It’s staying in the water that causes us to drown.”
And I realize that the only reason I haven’t drowned is because of the grace of God. We fall time and time (and time and time and time) again and yet our Lord dives in headfirst and pulls us out from under the rough, rolling waves. We make the same mistakes over and over…and yet He loves us unconditionally, unreservedly, and despite our questioning.
So, as I prepare to board another flight for more medical treatment and new doctors and more testing, I’m finding myself in awe of this God we serve…oh Jesus, what a Savior!
And if not, He is still good!
And this is why I felt compelled to write this – my story is not one of a simple migraine diagnosis. My story is complicated and messy and still filled with unknowns. I was mistreated and misdiagnosed and my body is STILL recovering from all the damage that was done. There is so much anger, sadness, and grief tied up into this messy story I’ve had to live. There are things I would do differently if given the opportunity to go back in time, but there are also so many blessings that have come from the past few years of my life – no matter how painful the seasons have been.
I’m no stranger to struggle. But because I’m no stranger to struggle, that also means that I’m no stranger to grace – to both the receiving of it as well as the giving of it. I know what it means to be shown grace, forgiveness, mercy and love. I know what it means that the Son of God died for me on a cross. I know what it means to pick up my cross each and every day and carry it – no matter how heavy it feels or how weary and worn down I may be. I know what it means to put relationships above achievement. I know what it means to savor quiet moments, to count blessings despite the hail storm around us, and to express gratitude for both the good and the bad. Because do we ever really know the difference between the good and the bad until we get to heaven?! What if the bad is being used to form more good in our lives?! What if the bad is the key to getting us to where we currently are – or to where God calls us to be?!
The struggle has made me who I am today – it has been the foundation of my reliance of the King of the World. My struggle has taught me that I must surrender, that I am not in control, that all I can do is raise my hands in worship and prayer to the God of the Universe. My struggle has taught me utter and complete dependence on the Only One who makes the moon reflect the sun.
It is painful.
It is a struggle.
I am changing.
I am growing.
I am becoming.
And where He calls, I will go!
“Every moment is granted for purposes we can’t see. Every breath is issued for eternal things left undone. We brush against people in check-out lines who will live forever in heaven or hell, and we contain God. Try to tell me your life is insignificant. Try to tell me that anything about this life is insignificant.”
― Jennie Allen
Information about Chronic Migraine:
https://my.clevelandclinic.org/health/diseases/9638-chronic-migraine
Migraine Facts
https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201