This Is My Migraine Story
I was always aware that I’d probably have migraines someday. Both my mother and her mother experienced migraines since their 30’s after having kids. As most migrainuers will likely tell you, they know the exact day migraines started. For me, this happened twice, the day I began having episodic migraines in August of 2016, and the day those turned into chronic in January 2018.
My husband and I were newlyweds, just two months into our marriage when everything changed.
A few days at the end of December, I had complete blurry vision. I had taken Excedrin preemptively in case this was a new form of aura, and in my mind adverting the headache. On the third occurrence I left work early and I drove myself to Urgent Care. As a graphic designer my eyes are my livelihood, and I’d be lying if I wasn’t freaking out a tiny bit inside. The doctor wasn’t sure but thought it sounded like a migraine given my history, even though I had not had a migraine headache. I asked if they could test me for diabetes, to ease my worries, which came back normal.
On January 7th, I just woke up with that excruciating migraine head pain. I was all too used to this pain so it didn’t dawn on me that anything was wrong. After a few days without any relief my husband started to worry, and cautioned me against overmedicating. At a level 10 pain for an entire week brought me to tears on several occasions, and felt like a vicious hell I couldn’t escape. I couldn’t work, eat or sleep… and each day was emotionally and physically torturous.
With my husband by my side, I got in to see a neurologist at UCLA almost two weeks later. He was nice and didn’t seem too concerned after running through various hand eye coordination tests. At my husband’s insistence he ordered an MRI to rule out anything serious (i.e. brain tumors, multiple sclerosis). He didn’t provide any immediate help or suggestions, with the results of my MRI he messaged me saying “Good news! Your brain MRI is very normal. Nothing behind your eyes.” and encouraged me to go to the ER if the pain got too much to bare.
Around 6 weeks without any relief he finally prescribed a preventative medication (topiramate) and this broke the cycle! A week later I had such adverse side effects that I was immediately instructed to stop taking it… but I didn’t care, I was pain free now. I returned to work and even lined up a new contract job. Everything started to feel like it was going to be okay.
Another 6 weeks passed, and while I had still had blurry vision and a few headaches I felt optimistic that my migraines would return to episodic. But, that’s not what happened and I’ve been living with chronic migraine ever since.
Migraine looks different for every person, and every day mine is associated with symptoms that can last for several hours to multiple weeks — head and neck pain, nausea, blurred vision, tinnitus, cognitive issues, sensitivity to light and noise, insomnia, and depleted energy. More often than not I power through all of this to work and socialize.
My lifestyle has changed dramatically, from extremely active to having hardly any energy to do much more than work and that’s a challenge in itself. My mindset has been challenged and I’m faced with depression and anxiety. My confidence has been shattered as I’ve been unable to workout and continue to gain weight despite watching what I eat, and I generally feel unequipped to do anything one-hundred-percent.
As a newlywed unable to enjoy my first year of marriage, and grieving who I was before all this pain, I still battle today with feeling worthy or enough. While our first year of marriage was not without pain, tears, or arguments, it brought us closer together through so much growth and continued communication.
I actively try to be as present as I physically can be, living with a mantra that if I’m going to have a migraine no matter what, I’m going to enjoy myself in the process. I know that I’ll look back and remember those good memories over the painful ones.
My husband continues to provide empathy and motivation. He tackles this disease with tenacity and strength, and has taken care of my every need — something I have had to learn to accept, to ask for help and communicate my needs effectively. He grounds me when I need it, reminds me that we’re in this together, and is my memory when brain fog is crippling. While this has been physically the most painful thing I’ve had to go through, I know it’s been just as challenging for him too. He continues to sacrifice and selflessly do anything to help me feel better. I express my gratitude and find small ways I can take care of him. I recognize his ability, generosity and unconditional love and encourage him to always express how this is affecting him.
The hardest part in that first year has been dealing with guilt. Not being able to show up like I want to, and for having thoughts, fears, and doubts control me. Through our open communication we worked through so much — and continue to. It is my hope to share our full story someday (soon) and be a source of hope for other couples living with chronic illnesses.
Support Make All the Difference
I am incredibly lucky to have a solid group of friends that continue to be here for me in more ways than I could ever have hoped or wished for. The amount of love, empathy and encouragement they provide, all while releasing me of all guilt, is truly inspiring.
I have found a lovely online community of warriors going through similar pain and day-to-day struggles. Following, talking and building these friendships has been pivotal in my mental health. I still have extremely rough, painful days — but through their support I quickly return to hope and gratitude.
I am still working full-time, and while that is more difficult than I can put into words… I continue to power through and try to provide inspiration and tools that help me work with migraine.