First of all, let me say that I am NOT a medical doctor. My mother and grandmother both were, so I was raised to sound like one unintentionally sometimes, but I assure you – I am not. So please keep that in mind. This post is entirely about my own experiences with epileptic seizures.
From what I’ve been told by numerous neurologists, no two people seize in exactly the same way, so it’s incredibly difficult to quantify seizures. Also, it’s important to remember that people with seizures were simply put into loony bins as early as the 1970s in the United States, here in the UK, and elsewhere. Although yes, there has been a great deal of research done on this disease, it’s always important to bear in mind that in the long run, it’s all started relatively recently.
Right. Please bear with me during this, because this is exactly what I have had difficulty sharing with people since my seizures began, almost 20 years ago. I seize a lot. Many, if not most, epileptics may have seizures a few times a year. I have them once or twice a week, and occasionally I have a cluster of 3-5 grand mals in a row.
So what does that mean exactly? Okay – like I mentioned earlier, please remember – this is ONLY my experience with epileptic seizures.
Sometimes I have a warning aura. To me, the aura manifests as a sort of glowing halo that suddenly appears around everything and I start feeling dizzy. Sometimes, I just start feeling ‘really not right,’ although I can’t put anything else into words. Sometimes, I lose the power of speech altogether several seconds before the seizure itself hits. All of these warnings have taught me to make myself prostrate as soon as possible and to get my head away from anything dangerous.
When the seizure itself starts, I stop breathing. This is a common symptom of a seizure – most people stop breathing completely during the course of the seizure itself, which is what makes long seizures so dangerous. My seizures typically last less than 2 minutes, for which I am exceedingly grateful. As pale as I am, that’s more than enough to turn my lips, nails and face rather blue.
With a grand mal seizure, the most frequent type I experience, I will sometimes exert a loud vocal moan first, which is my body expelling all of the air in my lungs in preparation for the seizure. Then I often progress into what’s called ‘tonic-clonic’ movements, the classic stiffening and full-body shaking that one typically associates with classic seizures. My hands turn to claws, my nails often cutting into my hands, my head will sometimes jerk back, my back will sometimes arch to a degree that I cannot achieve ‘in real life,’ sometimes causing ribs and clavicles to break.
It’s important to remember that when the seizure goes off, the lightning-storm in the brain, EVERY muscle is affected. Thus, I will sometimes bite through my tongue repeatedly and urinate and/or defecate on myself. (Thankfully, those don’t actually happen to me very often.) The exertion that each muscle has been through during the course of the 1.5 minute seizure has often been likened to that of running a marathon, and I’ve had more than one doctor tell me that during a big grand mal, I have actually pulled every muscle in my body. Given the pain I experience afterwards, I don’t doubt it for an instant (even though he may have been exaggerating just a bit to show that he understood how serious it was).
I have absolutely no memories of these events. They become a black hole in my memory, often starting from several minutes before the seizure occurred and lasting until up to an hour afterwards. My poor, patient wife has had to answer the question, ‘What happened?’ sometimes 10 times after the same seizure, because I can’t hold on to any new information during that time. The period of time immediately after a seizure is called being ‘postictal.’ It usually doesn’t last longer than about 20 minutes, but during that time I am most definitely not myself, but in a strange way I am a very, very basic form of myself.
During this time, when I’ve finally managed to string words together, I have said some completely random things. (One example: after a seizure in the US, the paramedics were trying to determine my lucidity and they asked me who the president was. In all seriousness, I replied, ‘the Dallas Cowboys.’) I have also told people that their curtains were ugly and I have repeatedly told my wife that she was fired. It is a very primitive form of my brain that is kicking in at the stage where I can start talking again but my entire brain hasn’t fully kicked in yet, leaving me with absolutely NO filter whatsoever. At times, some brutal truths have slipped out (like that about the curtains), that are nothing but what I absolutely believe, but would NEVER say. This continues to be a source of stress in my life, as you can well imagine!
After between 30 minutes and an hour, I’m back to myself again, albeit with no memory of what has happened. When alone, I’ve awakened half in-half out of a shower that was still running, in Emergency Rooms, and face down in my home, often with injuries. In fact, I had been experiencing seizures for several months, we think, before I was diagnosed. I caused a car accident and completely totaled my car for no reason that the cursory exam of the ER could determine. (Thank God, no one was injured.) It wasn’t until several weeks later that I had a seizure in front of my mother, who, being a GP, knew exactly what was happening and immediately called the ambulance.
More often than not, though, I am safe at home or at my in-laws house, where everyone knows exactly how to best care for me during these trying times. I know that I am extremely fortunate to be surrounded by people who love me and are completely accepting of my disease. I oftentimes take several days to recover from a single grand mal, because of the massive toll each one takes on my body, but I’ve learned to live with a certain amount of that and try not to let it dictate my entire life.
Everyone seizes differently, but this is what happens to me. I confess that it makes me feel ashamed to see it all here in print, but I have determined that I am not going to hold anything back about this disease in this blog, so…there you go. It’s 6AM in the morning before my coffee, which I have learned is the best time for me to write something difficult.
Thank for you reading this, I genuinely do appreciate each and every one of you that takes the time to read my words about such a difficult topic for me. And if you’ll please excuse me, I shall now treat myself to a cup of coffee. I think I’ve earned it. 🙂