Auras, Hallucinations, and What a Seizure "Feels Like"
Last updated: April 2023
"What does it feel like to have an epileptic seizure?"
People have asked me that and I've returned them glances probably like I thought they were morons. Isn’t it simple? Since I was out of it: it's no different than falling asleep while watching a movie, then being frustrated to wake up and discover I'd missed a lot.
In retrospect, I'm ashamed of my response because those caring inquisitors probably assumed I was "feeling" something, because my eyes remain open and I'm responsive to instructions during my complex-partial seizures.
Auras before a seizure and the postictal state after
I'm guilty of not considering that they likely weren't aware of the auras before seizures and the postictal behavior that follows them. Those phases have been very traumatic and terrifying for me!
The auras that preceded seizures in my younger days were scarier, and the postictal periods have become so in my middle age. Nowadays my postictal phase to get back "online" after a seizure is relatively brief, although some people need several days to recover!
Tingling and déjà vu
Auras lasted 10-20 seconds when I was a preschooler, without the vocabulary or experience to give my parents any more warnings other than to say, "I'm having that funny feeling." It was a tingling in my arms and body.
And since I wouldn't know the word "déjà vu" until middle school, the best explanation I had was, "It was a dream that I had before. I've been there before. It's a bad place."
Another aura symptom: hallucinations
Likewise, I didn't know the word "hallucination." I didn't understand irrational fear (having the physical and emotional sensations of fear when no peril exists) – but all were symptoms of my auras.
My formative years were spent playing "Army" and watching John Wayne war movies with friends, then watching news reports about the Vietnam War with my father. Perhaps those activities were the reason that as a child my irrational fear manifested itself in the hallucination of a shirtless American soldier. Belts of bullets hung over his shoulders, and he clutched a rifle with a bayonet that he was going to stab me with! My household was peaceful, but I'd stammer to tell my parents, "THAT M-M-MAN... FROM T-TV! H-H-HE'S OVER THERE! H-H-HE'S G-G-G-GONNA KILL ME!"
As I matured, I realized that he was a product of my imagination and needn't be feared. By middle school, I was able to watch "Commando" (as I came to refer to him) plunge his bayonet into me while continuing my lunch with schoolmates – who never realized there was a war raging in my mind.
The hallucinations got worse
The hallucinations became more ferocious after college when my straight-commission sales job was stressful and I floundered to pay monthly living expenses. "Commando" took a backseat to "Homeless," who was scarier because he embodied a real possibility.
He first appeared to me, shuffling up the entrance ramp towards a Chicago expressway I was driving onto one night. The vagrant scared me, so I accelerated to get past him. Once I reached 65 mph, I looked outside the front passenger's window and he was there – looking back at me! As frightening as he was, I didn't realize this was an aura.
I wasn't church-going at the time but I whispered the 23rd Psalm as I recalled it: "The Lord is my shepherd, I shall not want. Yea, though I walk through the valley of death, I shall fear no evil." After just a few repetitions, I blanked out. Several minutes later, I realized my car was wrecked with 2 other cars aside the expressway's dividing wall. No one was injured.
Scary and dangerous auras
My business worsened in the following weeks, and I started seizing every other day. "Homeless" appeared in an aura each time. Once, while waiting in line to see an employer at a job fair, "Homeless" started appearing everywhere in the university's gymnasium. I screamed.
"Can I help you?" asked an employer at the booth. She was extending a hand to take my resume. Without answering her, I realized that I'd had a short seizure and that there were no longer 3 people in line ahead of me. I didn’t know what to tell the woman and left the line without speaking to her, still clutching the resume. I immediately sought the friend who'd accompanied me to the fair and asked if she'd heard my scream. She frowned and told me she hadn't. It had all been in my mind.
A month later, "Homeless" met me on the same expressway and I started whispering the Psalm. Two miles farther, I unwittingly drove into the side of an 18-wheeler. I walked away, but "Homeless" was killed, because that was the last time I hallucinated during an aura.
After a seizure: loss of awareness
Interestingly, soon afterward (at nearly 30 years old), the postictal period started becoming intimidating.
I realized that after a seizure ended, I probably wouldn't have the slightest awareness of my surroundings for another 5 minutes. For the following 15-30 minutes, my awareness was spotty.
I compare it to trying to tune in to a TV show on an old-fashioned television. The screen is totally static, then suddenly an image appears for an instant. Imagine that the "image" is my awareness of my surroundings. The image's appearances grow longer and longer until at last, I'm fully tuned in.
It terrified me the second week after starting a new job in China. A seizure occurred without an aura when I was waiting alone for someone in front of a McDonald's. The next thing I know, I'm halfway down a 1-block alley and barefoot!
I was disoriented and didn't know which way to go because the buildings at either end looked unfamiliar. While recomposing, I picked some shards of glass from my feet before exploring the alley again and mustering the courage to walk out farther to see more of the buildings. Thank God, I recognized McDonald's! It was astonishing that no one had swiped the new shoes that I'd placed beneath a bench.
Another time in Atlanta, an aura came on for probably no longer than 2 seconds while boarding a bus to work. The next thing I know, I'm in front of a store across the street. I'd paid the fare, but had gotten off the bus and left a bag of CDs on it worth $120 that I’d had been carrying.
Another time was on the way home from work. It was probably 5 minutes until I recognized a Walmart and realized that I'd gotten off the bus 2 stops past mine. I'd left my favorite vest on the bus.
What it feels like after a seizure
During my postictal recovery, I can be susceptible to suggestions: particularly EMT responders who suggest I accompany them to a hospital. That's happened 3 times, and however groggy I might have felt, I became fully alert when they slammed the door shut, but they couldn't let me out because of their liabilities. That has cost me thousands of dollars.
Because of that, I carry a conspicuous card in my wallet and have told nurses at the schools where I substitute teach that an ambulance shouldn't be called for me after a seizure unless other injuries are noticeable. (At mentioning that I was "susceptible to suggestions" following seizures, a divorced woman once asked me if I was married. LOL!)
So clearly... I have had plenty of feelings related to my seizures!
Do you have epilepsy? Or are you caring for someone with epilepsy?
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