One in 26. That’s the statistic for the number of us who will develop epilepsy in our lifetime. Look around the crowded restaurant, the church service, the grocery store. There are plenty of us; many are afraid to speak it out loud, like I was for so long.
But not now. Now I will not be quiet! There is much that is misunderstood about epilepsy in the general public. So consider this “Epilepsy 101”. (There will be a test later…pay attention!) 😉

There are many types of seizures, typically described as either “generalized” or “focal”, the difference being how and where they begin in the brain. Mine were focal impaired awareness seizures. Yes, it’s a mouthful! AKA simple partial & complex partial seizures. These begin on one side of the brain and last 1-2 minutes. Mine came from the left hippocampus.

Without fail, I experienced a strange aura, a nightmarish sense of deja-vu. My body felt warm and tingly and I felt stuck to the ground, unable to move or speak. This is itself the “simple partial” seizure.
Then came the automatisms: lip smacking, mumbling nonsense, fumbling or sometimes falling down. That’s the part I never remembered. Afterward, I felt mentally foggy, scatterbrained and lightheaded. If you didn’t know I had epilepsy, you might think I was daydreaming or on some type of hallucinogen. A few times I lost control of my bladder. This left me hysterical and increasingly anxious.

Many of my seizures happened in my sleep. My hubby Wayne says my body twitching woke him up, and my breath-holding was what made his heart pound. I would grind my teeth hard enough to break them. Wayne says it was “horrifyingly scary”, particularly the anticipation of a long, bad seizure. And we dealt with a few of those.

Epilepsy is notoriously difficult to treat. And when the seizures morph over the years like mine did, you’ve got a complicated exercise in frustration. No medication or combo of meds could ever fully control my seizures.

So there you have it— a little taste of what we dealt with for 16 years. I’m an open book, as you can tell by now. Send your questions my way…and whatever you’re battling, I promise you’re not alone! Speak up and speak out. Knowledge really is power!