Epilepsy Blog Relay: Pregnancy planning and Epilepsy

Erica shares the story of her pregnancy planning journey, while also managing epilepsy.

Erica’s Story

Kenny & I have talked about having children since before they married in 2019. We’ve always been realistic, understanding we’d likely face some degree of complications with Epilepsy as part of the equation and that if it didn’t happen for us then we’d be ok.

All was going well though. I was on pregnancy-safe AED’s, the medication seemed to be working, my seizures were responding well to my RNS device, and my doctors felt that I was ready to safely carry and deliver a baby. So the tune changed a bit and we started talking excitedly about growing our family.

Pregnancy Planning

First things first. On January 17th I had my iud – the skyla – removed, which to my understanding has the lowest amount of hormones, so I didn’t think much of the process. It ended up being a bigger deal than what I was ready for.

The dizzy spells alone were enough to wish I hadn’t taken that first step at all. After about a week, I felt a little bit better, but occasionally symptoms would pop up out of nowhere such as intense headaches, body aches and fever chills. Then, on February 17th the dizzy spells came back. Only this time, I became so disoriented I couldn’t walk. I lost complete control of my legs, my arms and hands. I dreaded simply being awake, but falling asleep was next to impossible. Everything was spinning and everything hurt.

Diagnosing in the Dark

After 4 days of this, my neurologist decreased one of my AED’s in half, hypothesizing that my iud removal was having a much larger impact on my hormones and body than anyone could have anticipated, and for about a month I was taking more medication than I was able to safely handle.

Seizures

I guess you could say we’re past that hurdle (🤞🏼) but with a decrease in medication, comes an increase in seizures. Sure, they’re not terrible. My neuropace seems to catch them most of the time, but man, does it suck. Sort of feels like you take a step forward and then two giant steps back.

Medication management isn’t unique to me or to epilepsy. So many people deal with this daily and I feel for them all, hard. It’s a stressful, anxiety ridden task, but we don’t have a choice other than to get through it. Hopeful to be back to a steady balanced place soon, but until then 🫖🧘🏻‍♀️🤍 #epilepsy

This story was first published on Instagram and can be found on Erica’s profile: @oneintwentysixx