My Path to Hemiplegic Migraine Diagnosis – Part 1
Creepy, Tingly, Asleep feet
I’m scared on the inside, but on the outside, I smile so people don’t notice half of my body has gone limp and part of my face didn’t get the memo that it needs to keep functioning to appear like I’m fine.
My heart beats a million miles a minute and I start to feel my head get faint. I sit down as soon as I can because I know what’s coming on.
The numbness spreads and now my foot, my hand, and my neck have gone tingly and uncomfortably numb and painful. I wait until the initial wave passes and wait for the next few symptoms to start. I know I have 5-10 minutes before it happens again, so I run to a safe place, preferably a bathroom, where I can have privacy and no one notices my stroke-like symptoms.
By the time the next wave happens, the whole left side of my body has gone numb and I cry into my sweater trying to muffle the sounds of me wailing in pain. This neuropathy-like symptom is just the beginning of a much bigger issue.
I was diagnosed with Hemiplegic Migraines 2 years ago officially. Of all the health tests, procedures, surgeries and possible diagnoses I’ve seen cross my chart, this was uncharted territory and reading up on it actually scared me. But finally having answers gave me so much hope that these would be controlled so much better with medication.
Hiding my symptoms
There came a point during my phase of undiagnosed that I was standing at my desk, facing my coworker’s desk and I became extremely faint, couldn’t talk and my whole left side dropped. To my amazement, I had done the impossible – I had hidden my symptoms from her at my worst. I felt… so conflicted. This was the worst episode I had had up until that day, but the most severe, the most painful and the most eye-opening one yet. I slowly gathered myself, was able to sit back in my seat and I prayed that my coworker wouldn’t look in my direction and see the left side of my body. This was the first time I found myself unable to talk, hardly able to move (partially paralyzed by fear) and completely and utterly embarrassed by something I would have NO idea how to explain if my boss or coworkers found out. I knew I needed help. And I knew they needed to know.
The next big step
I knew the next big step for me wasn’t finding the right treatment. I’ve been through the ringer, medically and likely knew what was in store for me; finding meds that didn’t work at all, finding meds with adverse reactions and finally, finding/settling for meds with the less of these two evils. The hardest part would be trying to explain what was going on to the people I love, who surround me on a daily basis and letting them know this is not “just” a migraine.