Non Epileptic Seizures (NES) – A Personal Story
I am writing this story about Non Epileptic Seizures (NES) from personal experience. And because still so much is unknown in this area I wanted to share what happened in my own life.
I suffered from Grand Mal Seizures for 15 years (age 17 to 32). They appeared out of nowhere and were gone some 15 years later. I had several EEG tests conducted at St. Michael’s Hospital in Toronto.
They were seizures alright, but testing always came back saying that my brain waves appeared normal or within normal limits. Nothing indicated that I was an epileptic, and yet I was still having full blown grand mal seizures. This happened between 1969 and 1984.
This is what I have since learned. My seizures were not the typical Physiological Seizure, where the condition exists when there is sudden change of blood supply, sugar or oxygen in the brain. I was suffering from what I have come to understand as Physchogenic Seizures. These are caused by stressful psychological experiences of emotional trauma, and often indicate the body is under excessive stress. Which explains why my brain waves looked normal or least didn’t give off any patterns that looked like I was a true epileptic. Back then, the doctors just had no explanation for what could cause this.
For the record, I had some major, fall down face first, very scary to watch seizures. Without ever knowing where they came, they just became accepted as a part of who I was. Dr. Grey at St. Mike’s did prescribe a mild mood leveler called dilantin, which I took for many years.
Then one day, at one of my brother’s weddings, I excused myself and went outside the church, feeling light headed and concerned I might have a seizure. After the service my father came over and asked “what happened to you”, I said, “I felt a little light headed and was concerned I might have a seizure in the church, so I came out for some air”, to which he responded loudly and angrily, “there is nothing wrong with you!” .. well that was a life changing 6 word sentence!
I wasn’t a kid anymore and I had 15 years of crazy battles with seizures and the bruises to prove it. In those 6 words my father pushed a button in me that sent a flare to my brain. I was beyond furious, I was outraged that he would make such a foolish statement. I was so mad in fact that I reacted with my own barrage of rhetoric.
You see, in that moment, I rose and stood 16 feet tall and was talking down to my father. There was no backing away from how his comment made me feel. My rage went from 0 to 100 miles an hour in a heart beat, and I told him exactly where he could put his uneducated and non empathic sentiment.
So here’s the kicker, I never had another seizure from that day on!
It’s only my opinion, but my Grand Mal seizures had more to do with a son’s relationship with his father than what a typical epileptic might experience. Thus the Physchogenic Seizure type. Back in those days little was known about this type of NES (non-epileptic seizure).
Today I call my experience “Finding The Invisible Monkeys”. We all have them, some small and some large. Internal bad programming, an emotional trauma, call it what you will, but it’s an unknown stressor that is buried deep within us all. My invisible monkey was only revealed to me when I reacted to my father’s comment. Otherwise I am convinced I would still have these seizures even now.
There isn’t enough room in this article to complete the story, suffice it to say, the story doesn’t end there. There were actually 6 phases in all:
– The 15 Year Non Epileptic Seizure Period (The Invisible Monkey Years)
– The Unintended Confrontation (The Unknown Stressor Release Moment)
– The 2 Year Mad As Hell Period (Early Stage Discovery)
– The Awakening Period (Early Understanding Stage)
– The Forgiveness Period (Full Awareness & Understanding)
– The Gratitude Period (The Letting Go & Moving On Stage)