What It Feels Like to Live With Chronic Migraines

It was a warm Thursday morning on June 2015 when my body started to act as though I was walking through a cartoon. Everything had taken on a stop-motion animation feel, and I had to hold onto the walls in order to keep myself upright. I also started to feel a tingly sensation in the left side of my face.

I was a new manager and took my role seriously. So seriously, in fact, that I ignored my symptoms and continued to work for another hour before I couldn’t take it anymore and drove myself home. I wasn’t thinking very clearly and should never have been behind the wheel. As I was driving, everything took on a dream-like quality, and the edges of my vision got a little blurry. Luckily, it’s one road all the way to my home, and I made it in one piece.

When I got inside my house, my husband took one look at me and went into crisis mode. Apparently, I didn’t look good holding onto the walls to hold myself up and not being able to really form full sentences. He did allow me to put on other clothes before driving to the emergency room.

On the way to the emergency room, I began to lose the ability to speak, and my left side was quickly losing feeling and getting heavy. In less than 20 minutes, I was unable to speak in full sentences without becoming slightly incoherent, and I was terrified.

The ER nurses and doctors took quick action and got me into the CT scanner to see if my brain was bleeding. Luckily, it wasn’t. After a neuro consult via Skype (I live in a small town that doesn’t have staffing for neuro in the ER), it was determined I was suffering from a silent hemiplegic migraine that just so happens to mimic stroke symptoms.

I was relieved and horrified all at the same time. Had it been an actual stroke, I would have missed the window of time for adequate treatment. I was given oxygen, a pain reliever, and fluids and transferred to a hospital with an FMRI machine so they could take better pictures of my brain. 

The journey to the telemetry unit by ambulance was just the start of my migraine journey. I was poked and prodded and given various medications. I had three FMRI scans of my brain during my three-day stay, which means my brain has more pictures than a few supermodels.

At the end of my stay, I learned no real permanent damage had been done, but I would have to take daily medication to get my migraines under control. Otherwise, they could eventually lead to a real stroke. The danger I faced that day isn’t lost on me, and I’m forever grateful for the quick actions of my husband and the medical staff. 

Living with chronic migraines is nothing I would wish on my worst enemy. I live in fear on a daily basis because no matter what medications I take, I’m still at risk for a breakthrough migraine.

What does living with chronic migraines feel like, you ask? For men, it’s being afraid of sunlight glinting off of random objects when you leave your house. Sometimes, the beams sneak in and bounce off of objects in your home, and then the bouncing light triggers something called a visual aura. At first, the aura will create tunnel vision in my left eye, and over the course of five minutes, the aura will spread across my visual field, rendering me blind until the migraine subsides. While I’m blind, a pain like no other begins on the right side of my head, and I have to immediately turn out all lights and reduce all noise. 

I have also become so incredibly sensitive to caffeine. Everything I drink related to coffee has been reduced to half decaf or decaf altogether because full-blown caffeine will cause what I like to call “ice-pick migraine headaches.” It sounds just like it should — like an ice pick to the brain.

I also have to be careful with my chocolate intake. Too much of the good stuff can also give me a nasty headache.

And I still get the silent painless hemiplegic migraine. On those occasions, I start to feel the left side of my face droop and get tingly, and my mind gets fuzzy so that I can’t think clearly. 

My life has never been “normal.” I’ve suffered from migraines since I was a child, but as I’ve grown older, they’ve worsened and that’s worrisome to me. I hate living in fear, and I do my best not to let it rule my life. I do wish more people understood what it means when a person says they experience migraines. It’s so much more than a sinus headache or regular headache. I also wish I’d been given a proper diagnosis when I was younger. It baffles me that none of the doctors I’ve ever had ever took my pain seriously.

While the experience of being in the hospital was nothing short of terrifying emotionally, I’m forever grateful for being introduced to an awesome neurologist who is doing everything he can to help me live a pain-free and fear-free life. I can only hope that anyone else like me will be able to receive adequate care as well and not have to endure the silent and invisible pain of chronic migraines. 

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