The nonepileptic seizure Blog has invited author, Linda McClure, to tell us about her book “Mind Games.” It walks the reader through the experience of living with epilepsy and psychogenic nonepileptic seizures (PNES), also known as functional/dissociative seizures. This is a unique group of patients, often excluded from research and that can be difficult to treat since they require both neurological and psychotherapeutic care and a lot of interdisciplinary communication. She shows the rest of the world what it is like to go through live with this dual diagnosis.
After 6 years of living with functional seizures and epilepsy I’ve learned that no matter how strong I think I am, sometimes it’s just not enough.
The state of shock I experienced after my epilepsy diagnosis was nowhere near my reaction to the functional seizures. I thought I’d turned a corner and was moving forward, and accepted my new reality; my new normal. But researching this unknown condition was much more frustrating than the epilepsy. Support for those with a functional neurological disorder was unheard of and there wasn’t anyone who could understand what I was experiencing. All the books I found were written by doctors, some included patient stories but where few and far between. I became frustrated, angry, and severely depressed. Not only did I not understand functional seizures the first responders and many emergency doctors weren’t experienced in treating them. Through sheer determination I doubled my efforts to educate myself, signing up for webinars, reading anything and everything about this condition including research articles and more. In the end, my frustration grew. Nowhere could I find any information on living with both. There wasn’t any references anywhere. It was then I expanded my advocacy to include the 10-25% of people with epilepsy who also had functional seizures. And it was why I wrote Mind Games; Functional Seizures & Epilepsy: A Dual Diagnosis.
It was important for me to share my experiences and emotional setbacks so others wouldn’t feel so alone. I took all my journal entries, medical records, and conversations with fellow sufferers and wrote of our frustrations and how we’ve fallen through the cracks and can’t get the care we so desperately need. This book is for them, their families, and all those who misjudge us through their ignorance and lack of awareness.
Hugs,
Linda McClure