World Epilepsy Day, March 26
I am an epileptic, and have been so for as long as I can remember. As a child I was prone to grand mal fits. Ironically, I'm the only member of my immediate family who does not know what a grand mal fit looks like; I've never seen one. A friend of mine who once slept the night at our house saw me have a seizure. In the morning he was stunned - he told me that I had literally turned green. Not a pleasant thought.
It's said that some epileptics can feel a fit coming on - the smell of oranges is sometimes mentioned. I can't recall any of that. I only had grand mal seizures when asleep.
This has long since been controlled by medication. Mind you, some medications seem almost worse than the condition they treat. I was on Dilantin for a long time as a child. It has a list of side effects as long as your arm, some of them quite severe, including depresion and panic attacks. Others I've been prescribed include mysoline (rashes, mood swings), tegretol (halucinations, depression, heart failure), epilim (weight gain, hair loss), and lamyctal (weight gain, headaches).
These are strong drugs. Most of them are sleep-inducing and carry warnings against using them and driving. Ironically, some of them list seizures as a side-effect! My present cocktail is a combination of lamyctal and epilim. My neuroligst says that these two operate on the liver in opposing ways, so I have to take enough epilim to kill a horse just to reach therapeutic levels. When I lived in the USA, my doctor originally refused to prescribe the dosages I had been taking, as they exceeded USA national standards.
During adulthood I have had instances of absence fits. It's hard to describe what this feels like to a non-epileptic. The best I can manage is that it feels like somebody turned the lights off in my brain and then immediately turned them back on again, realising that somebody was still in the room. The author Paul Harding describes it as "lightning striking from the inside", which I think is an excellent description.
While the lights are off, I feel myself twitch a handful of times. I've done this in front of people and know that they do not see any twitching, so I think this is just some neurological effect in my brain. Often times, observers do not even notice when I have an absence fit.
Tests have shown that I can have convulsions induced by hyper-ventilation. A neurologist once induced a 90 second blackout by getting me to breathe into a paper bag. He cancelled my driving license on the spot, and I didn't get it back for about 15 years. Last year I had another incidence of this. I had a massive headache and could only deal with it by panting. I kept it up for so long that I started convulsing in the waiting room of a medical centre. Not fun for me, but better entertainment for the other patients than the decades-old magazines lying around. I did not black out this time, so it was the first time I'd actually observed myself doing it.
Now the worst thing that happens is occasional tics and jerks. I'm very hard on crockery and glassware, being prone to losing my grip and smashing them on the floor. Epileptics probably shouldn't live in places with tiled floors and granite benches. (I actually suspect smashing things may not be caused by epilepsy, but just general clumsiness induced by middle age).
I'm very grateful that I live in an age where the treatment of epileptics is far more advanced. I shudder to think what would have happened to me had I been born even 50 years earlier. It was relatively common in the past for epileptics to be institutionalised and for frontal lobotomies to be performed. As strong as my meds might be, I'll take them over that any day.
I'm also keenly aware that there are many people far more debilitated by epilepsy than I, who struggle to lead any kind of normal life. Just as I have benefited from advances in medical science, these people need further research into treatments that can give them hope and relief.
Today is World Epilepsy Day. If somebody from the Epilepsy Foundation or similar organisation approaches you for a donation to fund research, please give.
Greg.
Wow. I recognize some of that in myself. I had epilepsy as a child... I was fortunate though, I left it behind... my last seizure maybe was around 5, and I stopped taking Dilantin around 10. As well, my seizures were mild -- petit mal. I'd just kind of fall over.
ReplyDeleteThe convulsing thing due to hyperventilation is interesting too. When I was 13 some kids were playing a game with each other and invited me to do it too. They would hyperventilate then a couple of others would press on the chest to induce hypoxia, causing a few seconds of unconsciousness. They did it to me... in my case, I convulsed.
I'll tell you, now that you tell me that you were (are?) epileptic and convulse when hyperventilating, I have a strong feeling that that would still happen with me. You just taught me something about myself that may be important to know. Thank you.
There's more to the story for me though. While I was unconscious, I had an out-of-body experience. It all went pretty quickly. While I was passed out, I found myself floating about two feet off the floor, across the room. I thought, this can't be right, I'm two feet off the floor... where's my body? But the boys across the room interested me more... five of them standing around a sixth boy, who was laying unconscious on the floor. I had a vague sense that that actually was me. The boys standing around the boy on the floor seemed nervous. Then I saw the boy on the floor start to convulse... I began to feel a rhythmic pounding at the back of my head that was getting worse each time. Just as I was starting to think, "God, what IS that?", I found myself back in that body on the floor, and the pounding was my head hitting the wall.
For years, I took that as absolute proof of a soul, because I experienced it myself. These days I'm a bit more cynical and I frankly don't know what it was. That experience, which probably only lasted a few seconds, did help shape me though, I am certain. It probably made me more open-minded to spirituality than I otherwise would have been. More open to believing that there are things outside of our ken that nevertheless exist.