A generalised tonic clonic seizure, formerly known as a grand mal seizure, is the stereotypical type of seizure that you see on TV. The dropping to the floor and convulsing kind of seizure, where people yell for someone to stuff a spoon in their mouths. (Side Note: Never do that. Roll them to their sides and prop their heads up. Ensure that they can breathe. Here’s what to do if someone has a tonic clonic seizure near you.)
I don’t remember how many tonic clonic seizures I’ve experienced, as quite a number of them happened in my sleep. I would never have known had it not been for my partner. He would wake in an instant to help me, whenever he thought that I was having a seizure. Whenever he wasn’t there, I would figure it out on my own because the next day I’d have the biggest brain fog ever. The sort where I couldn’t even answer what 3 + 2 is.
In this article, I sketch out what a full blown tonic clonic seizure is like for me, whilst it was still fresh in my memory. The epilepsy auras and symptoms, if any, differ for each individual. Having a tonic clonic seizure is a very personal experience. I would be interested in hearing your story too, if you’d like to share.
*Updated: 23 February 2021
My Epileptic Aura: A Rush of Fear That Floods Your Brain & Body
A lump gathered at the base of my throat. I presumed that it was some random ailment, which you get from time to time living with a number of chronic illnesses. Then a sudden panic rushed through my veins, and I hurried to seek comfort.
“I’m having a panic attack”, I whined, as I curled up into a ball within the arms of my partner. I don’t remember anything that happened after that. When my eyes fluttered open, I found myself lying upon a pillow on the floor. I saw my parents standing in the doorway through a film of blurriness.
Post Tonic Clonic Seizure Feeling: Scrambled Brains
“You had a fit”, he said. “I thought you were being dramatic at first, digging your fingers into my body and making strange sounds. Then I looked down, and saw that you were convulsing and frothing all over my shirt, and your eyes were crossed!”
Apart from a mild headache, there wasn’t much physical pain after my tonic clonic seizure episode. But I have never been so confused in my life – my mind felt like scrambled eggs.
I don’t remember getting dressed with my father standing there, and didn’t know what day it was or if I had had my dinner. I couldn’t for the life of me remember my age, or how I had gotten into the ambulance.
Your short-term memory takes an especial blow, which can be quite frightening; a partial erasure from the timeline of events that define your personal history.
Flashes of Precision Post Seizure
I recall them pumping me out of the ambulance at the hospital, something I’ve seen done to others. Now it was my turn. A snapshot of the paramedics counting to three in a coordinated effort to transfer me onto a bed there is stuck in my memory as well. How was that even important? It is strange what the mind chooses to filter and retain with such specificity.
The A&E doctors dumped me at the waiting area after a CT scan, amongst a sea of sick people waiting for care. Deemed an urgent case due to my complex medical history, I managed to get a bed in a ward after a 29 hour wait. It would have taken a short 33 hours otherwise. (Note: Sarcasm.)
Seizure Epiphanies: Insanity is a Survival Instinct
The paramedic had exclaimed that she knew I had Antiphospholipid Syndrome and Lupus and was on warfarin. I had repeated it to her many times, yet I had no recollection of doing so after I had regained consciousness from my seizure.
It’s as if there are certain thoughts your brain judges to be of prime importance. And when you start slipping from sanity, that primal knowledge rises with vehemence in a bid to keep you alive. I suppose that is why insane people tend to repeat certain statements or actions – it is survival instinct in raw form.
Strange Side Effects of a Seizure: Tripping on My Own Thoughts
A few hours later, the opposite of confusion occurred. My thoughts were crystal clear, a rebooted computer with sped up RAM. I was alert and lucid. The smarter subconscious mind spilling over to the confined realm of consciousness, answering all sorts of questions. I regret not jotting them down whilst I could, as my mind has now returned to its socially acceptable, subdued state.
A Short Circuit in the Brain
The wiring of my brain still feels as if it has short-circuited, which is the probable case. You seem to recall vague thoughts you once had, or fragments of knowledge you used to know. But they have are all buried beneath a thick layer of brain fog, with no available tools to retrieve them with.
Brain Lag From Violent Seizure Activity
It feels as if the marbles in your brain were shook and their positions shuffled. Lost within the many compartments where memories are being stored and organised. A literal losing of your marbles. Even if you do manage to sort pieces of them out, the hinges of these drawers still feel somewhat rusty. There is a slight lag when retrieving information. You don’t remember places you visited a day ago, or where your things are around your own house.
I am unsure how long the brain will take to rewire itself after each seizure episode, or if it ever will – would anyone with more experience care to share? I hope my memories will return, as life would be quite meaningless without them.
An Update After a Few Years
So I can answer my own question above now. My epilepsy is currently controlled with Sodium Valproate (Epilim), but it did take a while. I had the weirdest side effect of rapid hair loss, which the male doctor didn’t quite see what the panic was about. There are many drugs for epilepsy that I can’t take, as they interact with my medications for Antiphopholipid Syndrome, a blood clotting disorder.
A tonic clonic seizure can be especially dangerous for someone like me who is on warfarin, as you can’t control where you fall, or if your head hits against an object, which can cause head trauma. This can cause haemorrhages, which can be particularly dangerous in the brain. That is why my doctors encourage me to get checked at the A&E after every tonic clonic seizure episode, even if it was under five minutes.
As for memories, they do return after some time. As I live with many chronic illnesses where brain fog is also a side effect, it can be a little difficult to differentiate where it’s really stemming from. It’s almost as if brain fog is a constant state just about every day, so I can’t figure this one out.
I will say that I had terrible brain fog for a whole year, where the neurology, psychiatry, psychology and rheumatology departments all couldn’t figure out what was causing it. It subsided on its own, as do many of my symptoms. My autoimmune disorder symptoms have a tendency to rise, torment, then fade away mysteriously like a thief. In this case, it might very well have been symptoms of CNS (Central Nervous System) Lupus.
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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