They called it a Stress Seizure Disorder. They couldn’t figure out what else to call it or what had caused it. They only knew I was passing out, I was fainting and a girl my age, I was in 8th grade at the time, shouldn’t be having fainting spells or episodes unless there was a damn good reason.
After a week of being in the hospital, taking every kind of test known to man at the time, being poked and prodded, kept up all night for more tests, talking to every kind of doctor, answering every kind of question, they decided I didn’t have diabetes, epilepsy, or any other medical or physical issue. They decided it was mental. They decided it was stress related. They decided it was a simple fact of my body and mind being unable to process and handle anything more and the red flag was the seizure. It was my body’s safe word, so to speak. It was my body and mind’s ways of saying it had had ENOUGH!
I had to go to therapy. I had to go to a neurologist. I had to go through years of sleep deprived EEGs and if you don’t know what those are, those are tests that monitor brain activity. Mine were to monitor it while I sleep. I would have to stay awake for a 24-hour period, the last 12 of which I could have no food, no caffeine, no nothing. And I couldn’t go to sleep. One might think for a kid this would be awesome, but no… The other part of treatment was medication. Phenobarbital. Twice a day. Between 500mg and 1000mg. That’s A LOT for a teenager that weighed 90lbs at the time.
I was on this medication until I was 16. I couldn’t drive or learn to drive until I was off of it completely. I couldn’t go swimming, or participate in any sports, not that I was particularly athletic and when I decided to go to an Arts School, that didn’t matter. I also couldn’t have anything hit me in the head, couldn’t have anything jarring happen physically, and my stress level had to be kept relatively low.
I remember one of my teachers called on me during a math class not long into this treatment. My body was still acclimating to the medication and I was in a daze for months. I looked and felt stoned. Anyway, this teacher called on me and I couldn’t answer with my name muchless the answer to a formula or problem. She asked and asked and finally yelled at me, asking ‘Are you on drugs, young lady?’ My answer: ‘Yes.’
She sent me to the office at which time they ‘threatened’ to call my mother. Now, one thing you have to understand is that my mother and my neurologist and my general doctor had all written notes to the school and to the teachers about this, about my condition, about what was going on with me and that for a while, to please just let me be. I told the secretary in the office that she really didn’t want to call my mom. She just smiled and said ‘too bad young lady’ and proceeded to call my mom at work. What followed was an ass chewing that could be heard down the hall. My mom won. She came to the school a little while later to pick me up and gave them another ass chewing. I was not bothered after that.
You must be wondering why I am telling you this. Well, my friend Tami, is going through something eerily similar. She is fainting and falling into things. She is on medication as well, though different than what I was on, but no less potent. Her doctors can’t find anything ‘physically or medically wrong’ with her either so they’ve as well termed it a mental disorder. Too much stress sends her body and mind into overload and it shuts down. It can be external stimulation, noise, a lot of light or rapid movement. It can be internal and emotional stress. The body and mind will simply shut down and she will pass out.
I feel horrible for her. She’s been injured through these episodes, hurt herself.
It took me a few years after being off the medication to figure out the triggers for me and what it was that I would go through and I could stop the seizure from happening. I basically just had to stop. I had to pull back, walk away, and remove myself from whatever stress was getting to me. We don’t all process things the same way. It was either figure out how to deal with it or stay on medication for perhaps the rest of my life.
Too much noise and external stimulation can do it to me too, especially if there’s an underlying emotional issue going on. I’ll get real shaky, my vision will start to blur, my ears will start ringing, and the final thing is that I’ll get very hot from the inside out. If things get to the point of vision blurring, I know it’s time to stop. If I start feeling like I can’t handle one more noise, one more question, one more of anything, I’ll try to pull back. It sounds like Tami is trying to find her way through this, too.
Unless you go through it, it’s hard to understand. People want to tell you and do tell you to ‘Suck it up’ and deal. Well, when faced with the prospect of either pushing through and trying to deal and ending up on the floor, or in Tami’s case down a flight of stairs or into a heater, or not sucking it up and backing off, backing away, moving off to a room or corner by yourself until you can breathe through it, well… It’s been thought that the migraines I suffer are my adult body’s way of dealing with it.
My heart goes out to Tami. This hard for her, for her family, for her friends to understand. When she and I talked the other day and I said I understood exactly what she was saying and going through, she felt better, at least a little. That’s all she wants is for someone to understand. She felt like she was the only one, but she’s not and I’m willing to bet, there are more people like us. I told her I would blog about this and well, that made her feel pretty good too.
If you know someone that goes through this, hug them and tell them they’re not alone. They’ll appreciate it more than you know.