A Decade of Epilepsy“I was thrust into this strange reality.”

As heard on The Ryan Tubridy Show

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Just before she went to school one morning, Jenny McEntegart’s mother came in to wake her. She found her daughter having a full-body convulsion in her bed. It was her first epileptic seizure. She was 14. Jenny came in to studio to talk to Ryan Tubridy this morning.

“After three full-body convulsions, I was diagnosed with epilepsy.”

From diagnosis to age 22, her epilepsy was controlled by taking a single pill a day. But at 22, the treatment became less effective and Jenny began more than a decade of living with severe epilepsy.

“I started to get more and more seizures. They were more frequent and they were more imposing.”

The seizures involved what Jenny describes as very aggressive left side shaking: her arm and her leg violently shaking so much that she would try to hold her left arm down with her right arm – something that never really worked. And the seizures could happen anywhere:

“Initially, my trigger was loud noises, so, audio sensitive. And that would mean a beep of a car or something just startling me. But, towards the end, as time went on, those noises could be as light as a spoon dropping.”

It got to the point where Jenny had to be accompanied by somebody everywhere she went, even walking around at home. How, Ryan wondered, did she keep going when seemingly anything at all could trigger a devastating seizure? Jenny told him that anything can become normal, once it happens consistently. “So, you’ve no choice really, just to plough through it.” From age 22 to age 33, no medical intervention appeared to work on Jenny’s seizures.

“People think of epilepsy, they think of full-body convulsions, dropping to the floor, but it can be partial seizures, which last, say, from five seconds to twenty minutes.”

Jenny eventually spoke to the Epilepsy Monitoring Unit in Beaumont Hospital about the idea of surgery, the preparation for which involved having a craniotomy and then a grid placed on the surface of her brain. It sounds like something from a Thomas Harris novel, but Jenny told Ryan that she didn’t feel any different while the grid was in place. Once this “invasive monitoring” was completed, the next step was full surgery.

“When I say full surgery, I mean removing the problem area from the brain.”

Following the surgery, Jenny went ten days seizure-free, something which was unheard of for her. After a while, the seizures stopped altogether. It’s an extraordinary story – with a happy ending – which Jenny tells extremely well. And the piece of her brain that was, in her words, scooped out like a piece of ice cream? Well, it’s sitting in a poorly-lit lab, bubbling away in a jar of formaldehyde, of course.*

You can hear Ryan’s full interview with Jenny, as well as the rest of The Ryan Tubridy Show here:

 

(*Ok, it’s probably not bubbling in a jar of formaldehyde. And the lab is, I’m guessing, adequately lit for research purposes.)

© The Listener 2019

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