My name is Michael, and I have epilepsy. That’s such a boring start. I considered if I should begin with a scene of me thrashing about as I have a convulsive seizure but decided to save that for some other time. Just diving right into it – weird. However, it is International Epilepsy Day, so with that important announcement, I’m making a less-important announcement. My name is Michael, and I have epilepsy.
I didn’t “always have” epilepsy. I did, but for years, there was so much disagreement between doctors, I gave up. As a kid, my parents thought I had absence seizures (previously known as petit mal seizures), but that is just me staring off into space for a few seconds, and I mean a few, literally. Two or three. I didn’t fall or become disoriented or confused when they ended. In fact, if I were speaking, I’d pick up the sentence I was saying where I left off, as though no time had passed.
My EEGs (electroencephalogram), which detect seizures, seizure activity, and epilepsy, were… open for interpretation. The consensus was they were abnormal. One group said it was epilepsy. The other said it wasn’t. I ping-ponged back and forth with over a dozen neurologists on the subject, and both sides were equal. Doctors put me on anti-seizure medications, but they didn’t work. These daydreams versus absence seizures stuck.
When I died on my 25th birthday (see the About section if you’re curious), I had several tonic-clonic (previously known as grand mal seizures; I was convulsing while unconscious) febrile seizures. You can get febrile seizures when you have a high fever, anywhere from 102 and up. Nearly reaching 109, this had to be expected. I mean, it had already caused two strokes. I didn’t have any seizures after that, not even while being treated for the illness (Infective Endocarditis) that caused my fever. They put me on anti-seizure medications for six months with regular check-ins, just in case. (Ironically, it was the same medication I was on as a kid.) I was in the clear. Neurologists looked over my most recent EEG, were in the “it’s not epilepsy” camp, and because of the circumstances and because I’d not had a seizure since I didn’t need to take the medication any longer.
Fast-forward nine years. I could drop in that dramatic scene of me thrashing in the passenger seat of a moving car. Nice. Luckily, we were actually near a hospital. For once, I did something right. I kept saying, “Are you sure I had a seizure?” I only remembered feeling sick beforehand; my ears were buzzing painfully, I felt I was outside of my body while my skin was angry, like needles, and my stomach made me sure I was going to throw up. I was so hot, overheated, and clammy, while my head was light, empty, yet with one fierce pressure headache, and it all came on so suddenly, and now here I was in a hospital bed, with an IV complete with the quintessential IV bag. Of course, I kept asking everyone if they were sure and argued, “How can you know?” because what is a hospitalization without at least one argument? I was lucky.
My next one, not long after, was in our bathroom; it began as I was standing. I fell forward, hitting my head on our porcelain tub, which forced me back, and I fell, smacking the back of my head on our stone tile floor, and then, of course, all the wild thrashing on that stone floor. Nice, right? Perhaps I really should have started with that. I still have a reminder of that seizure, a knot in my forehead where I smacked the porcelain that some “lovingly” refer to as my horn.
I didn’t need other seizures (there were others; we needed to find the right medication and dosage; by we, I mean my doctor and I) to convince me I didn’t escape the epilepsy that ran in my family. It killed my Aunt Linda, whom I was close to, and would call on the telephone, and she’d talk about the soaps she was watching, and I’d pretend to understand, not because she was having difficulty communicating but because I was in school during those soaps. Remember my timing thing? (I mentioned it in my About Section; I’m amazing with it.) The morning they found her was the same morning my shunt broke, and I needed brain surgery to fix it. (I have hydrocephalus, treated with a ventriculoperitoneal shunt.)
I waited until the end of her funeral and even gave a eulogy. I’m a mad boss when it comes to pain and pushing through. It doesn't always end well, though. As soon as her funeral was over, I was in the OR because everyone, including my surgeon, knew my shunt had malfunctioned since the day it did. You get more flexibility with shunt malfunctions as a kid since the brain isn’t fully grown. (While epilepsy ran in my family, both my hydrocephalus and my epilepsy were considered complications of a brain hemorrhage I had when I was an infant).
We figured out my medications, and I went seizure-free for over a year when I had a breakthrough seizure, which is a seizure someone has after being seizure-free for a year or longer. I was in the car again, but this time, we were parked at a gas station not far from our house, so except for my seatbelt, it was convenient. This was kind of the routine for four years. Go a year, have a breakthrough. Up my medication a little bit. Go a year, have a breakthrough. Up my medication a little bit. Then, the routine ended.
Suddenly, I was experiencing so many types of seizures, and some only affected one side of my body or only parts of my body. Some lasted hours, a condition known as Status Epilepticus. It’s a potentially fatal condition that one should always go to the hospital for. PSA: If a seizure lasts longer than five minutes or you have a cluster of seizures where you don’t regain consciousness or regain limited consciousness before going out again, get your butt to the nearest emergency room. For someone like me, who hates hospitals with a fiery passion, I do. So, should you.
This neurologist refused to listen to me and told me because of tests they performed, including an MRI, CT scan, and a Video-Epilepsy Monitoring Unit (EMU), which is absolute hell (for real, they intentionally put incredible stress on the body to trigger a seizure including, but not limited to, sleep deprivation, bright flashing strobe lights inches from your eyes, noise tests, the works). They don’t hold back, which I’d normally appreciate, but like everything, nothing came of it.
When my shunt breaks, CT Scans and X-rays often say otherwise. I have a syndrome within my hydrocephalus that causes this. It masks a broken shunt as a functional one. Just like my shunt, what I had was hiding; it wouldn’t show on any test. Now, I was told these new seizures weren’t seizures or epilepsy, but I knew better. I wasn’t going to play that game again. I pushed. I found a new neurologist, did my research, and fought hard, and a few years later, I was diagnosed with Frontal Lobe Epilepsy (FLE) and deep brain seizures (scalp-negative seizures), both of which often don’t show up on EEGs or other tests. It was validating, but it was also telling me what I already knew. I demanded treatment then before I had names or official diagnoses because I settled for nothing less. No matter how many people told me I was wrong.
We, people with epilepsy, know our bodies. My auras, seizures, and how I feel after them have made me more aware of every piece of me. I was ignored, and I know many others are, too. If people won’t listen, make them. Your voices matter. Your stories matter. Mine was a full reversal of cutting through the clouds, arming myself with knowledge, owning my experience, and making things happen. It was difficult and empowering at the same time.
People with epilepsy are not brittle, or confused, or stupid. We can do anything others can. Hell, we can do them better. That’s the misconception – we don’t know better, but we do. I hope today is not just a day of epilepsy education and awareness but all our voices. Our experiences and stories. Share them. That’s what International Epilepsy Day is all about.