It's Not Epilepsy
(this is going to be the attempt to write a book about my seizures, hopefully the seizures don't too often prevent me from making progress on this...but I'm already struggling to stabilize enough to keep writing after each paragraph...thinking is a trigger for my seizures...)
It's not epilepsy, but it's still a seizure. And trying to convince the doctors of that is a nightmare, for all of us with this condition, around the world.... It's not epilepsy but it still hurts like hell, and it's still completely debilitating. I don't lose consciousness or awareness, but I lose the ability to control my body. Sometimes that's simply being essentially paralyzed, unable to move without extreme focus, which if results in anything is a convulsion of unrelated muscles from what I was trying to move; I don't lose feeling, just the ability to move. But more often than the paralysis, is the convulsions, spasms, leaving me curled up in a ball, or stretched out bending backwards, or my arm flailing, or the side of my spine wrenching. Sometimes I lose the ability to speak, and no matter how hard I try to get words out, the signal just doesn't make it through from my brain to my vocal cords and mouth. And rarely are two seizures the exact same, though they happen more often than I can track.
Though most of this book will discuss what I go through during my seizures, and how I've learned to work through them, I do need to spend some time introducing myself and explaining how my seizures started and the possibilities as to why they started. The why is very important in figuring out how to work through them.
The first event that I really recognized as something severely wrong with me was in October of 2001, I was 18... Though, thinking back through the five years prior to that, I recognize a few events that might have also been smaller seizures. Times that I had odd feelings of paralysis and complete exhaustion that were similar to what I've been going through in more recent years.
I turned 18 in May of 2001, as a Junior in High school. We moved from Wisconsin back to California (born in California, moved to Wisconsin just prior to the end of 6th grade...) between Homecoming games in October 2000. I ended up not having a senior year of HS because of politics that I don't need to go into here, and how the move compiled complications for graduation requirements between states, and the federal changes to education funding... I scored really highly on the Armed Forces assessment exam they gave us prior to turning 18, and every recruiter that called highly praised my results and said I could be in advisory positions, potentially one of those Officers planning Missions. However, when I did go in to join up with the local National Guard, the recruiter asked about past medical issues, and I had to acknowledge a diagnosis of ADD...he asked if I'd ever taken Ritalin for the ADD, I had to say "yes," and then he said it was nice talking to me....that was the end of my chance at Service... And then, a few months later, I had my first seizure...exactly what the recruiter was worried about.
Though, Ritalin is not the only cause of this condition. Certainly not everyone that had to take Ritalin ended up with seizures, but I have had at least two friends that were on Ritalin and ended up with seizures later in life. But there were other similar issues that are recognized as potential causes for these non-epileptic seizures. Or more specifically, Psychogenic Non-Epileptic Seizures. It's a form of panic attack, as a result of PTSD, often. Childhood/youth trauma, unresolved, that can lead to any sort of anxiety causing the body to shut down, and go into convulsions.
For my own sanity, and to avoid triggers for readers, I won't go into details here, but I'll say that when Columbine happened, my bullies decided they "should be nicer" to me. I assured them I wouldn't snap like that, but it was nice to not dread going to school... Several times, I came close to deciding to leave this planet....spending many nights completely broken. I was already socially awkward, depression made that worse. Game Of Thrones was actually therapeutic for my PTSD related to a certain form of leaving... and it definitely is PTSD. In the Facebook groups where I've talked to others with these seizures, PTSD from trauma and/or depression of some sort is common.
