The First Migraine
I was always aware that I’d probably have migraines someday. Both my mother and her mother experience migraines — and my grandmother always told me she couldn’t see half her face in a mirror when she was about to get a migraine.
In August 2016, I had my very first migraine with aura creating a blind spot in my right eye for about 30 minutes. I was at a grocery store trying to read the credit card machine but I couldn’t see parts of numbers or words. I thought it was broken but the clerk looked at it and told me it was sharp. He assisted me checking out and I dashed home as quickly as possible… half blind. My husband also gets these same type of migraines every once in awhile, so when I walked in the door and told him what happened he knew what to do and took care of me.
I took an Excedrin Migraine, ate a little food because I had just had done an intense crossfit workout. After showering I felt heaviness on the top of my head. It felt like someone was pushing me down. This was the most excruciating pain my head had ever felt! The pain lasted for several hours before letting me eventually fall asleep. The next morning I felt awful, foggy brain, and lethargic, something I later learned is the “migraine hangover”, without the fun shenanigans the night before.
This cycle became a monthly routine, sometimes twice a month, and always around my period. I started learning how to deal with it and on some occasions could minimize the pain if I paid attention to the warning signs.
A Different Warning
At the end of December 2017, I was at work when my vision blurred. At first I thought it was the new mascara I just put on that morning, so I took off my makeup but the vision didn’t correct. Thinking a migraine was coming on I went home immediately. Luckily no headache came, and the vision seemed normal a few hours later.
The next day it happened again — complete blurry vision signaling me that something wasn’t right. I took an Excedrin, left work early (again) and I drove myself to Urgent Care. This wasn’t my typical aura and as a graphic designer my eyes are my livelihood, I’d be lying if I wasn’t freaking out. The doctor wasn’t sure but thought it sounded like a migraine given my history. I asked if they could test me for diabetes, to ease my worries, which came back normal.
Wondering if I might need a new eye prescription, especially since I had not gotten a migraine, I made an eye appointment. After going through all the regular tests and the doctor thinking quietly to herself, I finally broke the silence and asked her if something was wrong… she said my eyes were perfectly healthy and she didn’t know what was causing the blurriness.
The biggest mystery to this was how the blurriness fluctuated throughout the day. I thanked her and told her I’d like to wait to order new glasses since I wasn’t one hundred percent sure I needed a new prescription. She mentioned possibly eliminating foods and recommended a book she read about this particular diet for decreasing/eliminating migraines.
When it all changed…
On January 7th, everything changed. I’ll never forget this date. The migraine I was used to getting set in and the pain intensified. It was excruciating and debilitating, I couldn’t work, I barely slept, and my husband was worried to death about me. That first week of pain went as a snails pace but now, as I try to recall the events it’s all a blur. I documented everything which is half the reason I’m able to recall the order of things now.
Entering the second week of non-stop pain, my husband warned me of “over medicating” (I was only taking Ibuprofen or Tylenol) because it could cause a rebound headache worse than the one before. I tried to tough it out one day and ended up in tears which only made it worse. He offered to take me to the emergency room but I was able to get a tiny be of relief from our over the counter meds, and dreaded going to the ER. Each day the pain built and I was hanging on by a thread.
We were fortunate enough to get into see a Neurologist on January 16th, and he noted how organized and impressed he was with my tracking skills. He told us about the Migraine Buddy app but the last thing I could fathom doing was learning a new app and being on my phone with a migraine. The doctor was nice and made a few jokes about our dynamic, it helped ease some of the tension and anxiety we were both feeling.
To rule anything serious out (Brain Tumors or M.S.) they ordered an MRI at the end of the month — the results came back normal.
I was first prescribed Sumatriptan, but triptans only work when you take them at the onset of a migraine. Mine had not broken for 5 weeks at this point so the times I did try taking it I didn’t see a difference. Luckily, as a patient through UCLA’s network, we can email our doctors. I reached out and explained my pain and he also encouraged me to go to the ER if I couldn’t stand it any longer.
Meanwhile he also prescribed Topiramate which I started at the end of January and took for 5 days. I developed sever side effects (feelings of depression, increased anxiety, twitching body part) and he told me to get off it immediately.
Finally, 6 weeks later, something broke, I felt better! While I had such a horrible experience while on Topiramate I have that drug to thank for breaking that cycle. I was so grateful to get back to living pain free! I returned to work, had a new contract job lined up for March, and feeling like myself again.
The blurred vision however, continued to persist and fluctuate — and still does to this day. I have seen 6 different eye specialists who all assured me that my eyes are healthy, and have done every type of eye test there is. The only explanation that seems to fit is that I’m in a constant state of migraine and this is the aura. Also worth mentioning is that my other aura, the blind spot is completely gone.
The Diagnosis: Chronic Migraine
At the end of March the headaches started to return. Not as intense but over the next few weeks it built and built that by April I was feeling a rush of anxiety and the gamut of doctor appointments resumed.
I have tried 6 migraine prescription medications, have gone through about two dozen tests including a 2 hour long eye exam and a spinal tap in September. I’ve tried elimination diets, acupuncture, chiropractors, physical therapists, craniosacral therapy and million at-home-remedies… most of which I maintain on a regular basis hoping one day something will work.
Pain is constant, it fluctuates day-to-day, and having a support system is the foundation of what helps me keep pushing forward. My husband, family, and a few close friends are the foundation of my support system. Fortunate enough to still work full-time and being in an understanding work environment is something I sometimes worry I’ll lose.
Most of all, finding the community of others going through similar pain and day-to-day struggles has been pivotal in helping me remain hopeful, encouraged and understood.