Friday, December 6, 2013

My Life as a Ticking Time Bomb

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I had my first pseudo-seizure in my junior year of high school.

Pseudo-seizures manifest in all kinds of different ways and are often misrepresented as psychosomatic. Mine are atempo convulsions and loss of motor control while still maintaining consciousness. They are caused by two defects in my nervous system which I was born with: familial tremors (caused by the nerve synapses at the base of my skull being spaced too far apart) and a strip of fatty tissue running down the center of my brain. Both of these are, on their own, pretty harmless, but combined result in messages between nervous systems becoming interrupted.

This is most complicated by my stress levels and made worse by the fact that I suffer from high anxiety (which is also made worse by the fact that I'm constantly worried about whether or not I might have a seizure). Essentially, when I become too stressed too quickly, I run the risk of having a seizure. Conversely, if I become too relaxed too quickly I also run the risk of having a seizure.

My first PS episode happened during the first time I tried to meditate in a high school drama class. Our teacher was guiding us through meditation when suddenly my entire body started to shake and I began to panic massively, only making the seizure worse. I managed to run into the next room and began convulsing on the floor. My father was called and I was rushed to the hospital.

Over the course of my junior and senior year I became so panicked about my constant risk of having a seizure that I, unknowingly, triggered many, since I didn't know what was triggering them.

My parents were extremely worried. No doctors could figure out what was wrong. I went through multiple CAT scans, MRIs, and, worst of all, EEGs with seizure-inducing techniques as they tried to find what was wrong. They quickly found the familial tremors and ruled out epilepsy, but tested me multiple times for epilepsy because it seemed like the most likely cause. Finally, they did an advanced MRI on my brain, discovering the fatty tissue at the center, and were able to determine the cause and that stress was my major trigger.

Most of my life I am fine. I mean, my hands constantly shake, sometimes far worse than others depending on things like diet, exercise, stress, and anxiety, but rarely does it interfere with my life. The worst art about the seizures, however, is the waiting...

My body stock-piles all the anxiety and the misfired messages in my brain. It's like a dam being filled to the brim: every now and then, the flood gates need to be opened. I can have seizures for absolutely no reason other than the fact that I haven't had one in a long time and my body has all this excess energy saved up. The worst part, is that I can feel the lake filling.

As I get closer and closer to a seizure everything begins to feel terrible. My spinal cord feels as though It's been shoved into a tube two sizes too small. All of my muscles begin to feel alien and like I do not truly control them, they are just attached, but not under my power. I begin to feel anxious about everything and am in a state of constant dread. Life is led constantly on the edge of a knife, waiting to be pushed one way or the other. I can't relax, I'll have a seizure. I must protect my stress levels at all times, or I'll have a seizure. I begin to constantly panic but know that panicking is the worst thing, because I'll have a seizure.

When it hits my muscles tense and release over and over again. My back in particular will flex and arch hard, bending me into horrific shapes. My fingers claw and grab whatever is closest to me because holding something solid is often the only way I can calm myself. If the seizure is bad enough, I will go through minutes where the pain is so unbearable that it takes my breath away and I begin to choke. I cannot speak in more than two or three word answers.

I have pills that I can take, hardcore muscle relaxants that turn me into a zombie, or I wait it out, hoping it passes. After the worst seizures, I can lose control of my legs for up to half an hour after, completely unable to move.

This is what I live with. Those who know me well know that whenever I laugh hard or am excited I will pull my hands to my face and clasp them together tightly while closing my eyes. I've been told that this is one of my cutest features. What people don't know is that, when I do this, all of the muscles in my face, jaw, back, and chest also tense up suddenly, causing them to feel as though they are about to explode from whatever joy or excitement I am feeling. They don't know that my mouth clenches so tightly when I do it that my upper jaw permanently sore. It's a permanent tick that I have no control over and is a side-effect of my larger disorder.

People may say that pseudoseizures aren't real, that they are merely psychosomatic, but I can tell you that I have them when I'm completely alone. That I've had them without crying out for help, that I don't want these, never wanted these, and wouldn't wish them on anyone. They are part of my life, they are the worst part of my life, but they are me, and I must accept all of me.

1 comment:

  1. I understand what it is like living with a seizure disorder. I had what was then referred to as Grand Mal seizures caused by a head injury as a child. I remember the EEG's, blood tests, and medications. Luckily for me, when I had a seizure I had the aura feeling knowing a seizure was coming but was not conscious when it happened. I had my first seizure in class and woke to my teacher and classmates surrounding me, not to mention the knowledge of losing control of my bladder. I was embarrassed over something I had no control of. Funny how the ego runs away from me sometimes. I hope you know you should not feel embarrassed for things you have no control over, it creates unnecessary stress. I wish you wellness and calm. Remember to breathe.