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So This is What a Tonic Clonic Seizure Feels Like

So this is What a Seizure Feels Like

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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This Post Has Been Published on Huffington Post here.

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34 comments

  • That sounds so so tough and scary Sheryl! The brain being shook up and not having the sharpest memory could make you feel so lost. I wonder how someone who is going through a seizure can be helped or certain aftercare that we should know about?

    • Hi Shruti, thanks for the post idea haha. It isn’t quite so much scary for me as for others who witness an episode, I think. Although the memory loss is frustrating to say the least, like you’ve forgotten who you are.

  • Thanks so much for sharing, Sheryl. I’m so sorry you go through this. Do you mind me asking how your seizures are now? Have they increased in frequency and intensity?

    • Hi Carrie, they’re currently pretty much well under control, although I am on meds for both epilepsy and depression/anxiety and they do have overlaps. Thank you for reading and for your concern my lovely friend x

  • So sorry you had to go through that Sheryl. No wonder you have a phobia of hospitals too. A wait of over a day for a bed is about 28 hours too long. Hope you are able to manage it better now with medications etc.

    • Hi Claire, haha yes I HATE hospitals. Did I mention I hate hospitals? :p Well it was mostly after a 2 month stay where I couldn’t move at all, muscles wasted away, and was in extreme pain. I went mental and moving to a bed by the window helped tremendously, just seeing some greenery. Thank you for your concern. Yes it’s pretty much controlled (for now) with meds!

  • I had a student, years back, that had many mini-seizures (blanking out/staring into space) and now and then grand-mal seizures (on the floor convulsing). One of the scariest things I’ve ever had to handle. She was so worn out after. Thank you for describing this so clearly. My heart goes out to her, you, and all those who deal with this.

    • Hi Katie, yes it can be really terrifying for the people around them to watch and not know if anything really serious is going to happen! For me thank goodness so far it hasn’t felt like pain, I just don’t even know what happened and get really confused for days – that’s the suckiest part. Sending love!!

  • Hugs! Let’s hope that it is also your last seizure!

  • Thank you for this – my daughter has seizures but is non verbal so I don’t know what it’s like for her. I have often wondered and worried. Lowen @ livingpositivelywithdisability.com

    • You’re most welcome Lowen, although every person experiences it differently! I did get some feedback from others who said their experiences were similar, though. I suppose as a mother it is difficult not to worry, but I know you’re trying your very best, and I’m sure your daughter appreciates it too 🙂 Have a good week ahead x

  • Your description of how you feel is intense. I do hope you are feeling well at the moment and can live your life. Thank you for sharing though. What an inspiration to others you are.

    • Thank you for dropping by 🙂 It was a very intense experience indeed. At least it didn’t hurt and doesn’t happen on a frequent basis, so I’ll chalk it up as worth an experience once in a lifetime. Heh.

  • That all sounds like a really scary experience. I can’t believe how long you had to wait for a bed. That is truly awful. Such a compelling description of what it felt like. I find it interesting about how much is stored in the subconscious. So much “stuff” there we may never recall. Fascinating! I’m sorry you endured such a horrible experience and hope you’ve not had any since xx

    • Hi Emma!

      Looking back, it wasn’t a horrible experience, but only because it is not my primary disorder. (Am sure it wouldn’t be nice to experience this on a frequent basis!) It provided me with very interesting insight into my own body (or out of it ha). Something really quite out of this world 🙂 Thanks for reading as always! xx

  • This was such a wonderful article. I was diagnosed with epilepsy about 8 months ago, so Im trying really hard to understand it. I am dealing with this all bymyself & have a neurologist that doesnt seem to care much. I worry constantly, I get glimpses of auras on a daily basis and i have no idea how to get myself out of it. I feel like if i let an aura get too long then i can induce my seizures. It all starts with trying to put the same memory together, EVERYTIME that memory flashes in my head I am almost certain that itll lead to a seizure. i dont know what to do, im alone, do i change my diet? my exercises? mind exercises? i dont know.

    • Hi Mary, how are you doing? It’s definitely scary when you have a doctor that doesn’t seem to care, and when you’re all alone! Is there any reason that you can’t change your neurologist? Because I think that’s the most important thing in managing it right now. Diet, exercise, etc will help, but you need medications, and you need to work with your doctor closely on this.

      My neurologist told me that a lack of sleep is the biggest trigger for epilepsy, so make sure you’re getting enough rest. As for diet and exercise, I’m not a doctor so please check with yours. What I do know from personal research is that exercise does actually reduce brainwave activity and thus, helps with epilepsy. Of course, do exercise common sense too and don’t go jogging when you’re tired or unwell! 😉 Check this link out: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/epilepsy-and-exercise

      If you do further research, make sure the sources are from a credible source (such as a government site, or a site with a certificate of medical accuracy). And of course, listen to your body as well. Wishing you all the best x

  • This sounds truly awful. Thank you for writing about it and sharing it with us all xx

  • I hate that you went through this, but I can’t remember the last time I read anything articulated so beautifully.

    • Hi Stacey,

      It was quite an eye opening (or closing ;)) experience! I’m just really glad there was no pain, really 😉 And thank you for your kind words, they made my day! 🙂

  • The memories come back later in flashes like it was a dream or something. But you are lucky and haven’t realized it, you have an aura before you have a seizure. This is a good thing to recognize and remember, it will protect you from dropping to the floor in public, or if you still drive it’ll warn you of one coming in time to pull over. Try to remember all of the feelings you were having before the last thing you remember; did your stomache hurt, did you smell anything unusual, did you get a funny headache? lol and memorize this phrase “On the floor”. Whenever you wake up from one someone will always ask you “do you know where you are?” At this time everyone is scared for you, and tense, which can bring on another one. If you tell them you are on the floor it makes them laugh and breakes the tension. Good luck with learning and understanding seizures, I have live with them for over 40 years and it is a constant everyday process.

    • Hi Milissa,

      Thanks for the tips! Yes I usually have visual or aural auras but have never had it happen like this before (then again, this was my first full blown seizure!). It is not my primary diagnosis, but I think it’s linked to my Lupus. Nobody really knows 🙂 Apart from that rush of fear/panic, no other warning sign. But now I do pay attention and try to be somewhere safe when I do feel anxious in any way. I’ll remember ‘on the floor’ 😉 Cheers!

  • I can’t help but feel a deep sense of pain.
    I really hope you are well.
    In the meantime make all the new memories you can enjoy as much as you can.
    Our lives can take a shorter course so that being said.
    I hope that your memory comes back and you make many more new ones.
    Your story is therapy for everyone who suffers this diesease.thank you
    I hope this finds you well, Johnny

    • Hi Johnny,

      Thank you very much for your kind words 🙂 I was actually quite glad there wasn’t pain in this seizure, and I was relieved I didn’t bite my tongue (maybe watch too many TV shows!). So in that sense, I am also quite fortunate 😉 Yes, definitely will try to create some happy memories whenever possible. Wishing you a great week ahead!

  • What a powerful description. Wishing you all the best and that your memories come back to you. Hugs xo

  • You’ve described this very well, I feel like I understand what you went through. It’s a very powerful telling. Have you have another seizure after this?

    • Thanks Ava! I’m glad that others are able to relate to it through words! That was my one and only big seizure (fingers crossed). Apart from that, I’ve had transient attacks and mainly auras. While the docs think it’s standalone, I think it’s related to my Lupus. It does touch the surface of my whole body 😉 Hope you’re doing well! x

  • I had my first seizure about 12 years ago and it was very much as you describe here. I remembered nothing at the time. My husband said I had 3 seizures by the time the ambulance arrived and that I had insisted I was okay. I have only had a couple since, though I tend to have absent seizures quite often. They have not found a reason yet. I hope your memories do return. It is horrible not to know what has happened in parts of your life.

    • A year later, some parts of my memories have returned, although they were ‘jogged’ by having someone else mention them first! They’re still there, just reshuffled into a different position 😉 It doesn’t help with the brain fog I get from depression or Lupus or whatever is causing it (we don’t even know!). Thank you for your well wishes. I hope they find a reason for your seizures and manage to control it better. Sending good thoughts your way! x

      • I know how you feel I have many and lost my memories and my friend sometimes help but dosent always work not a nice thing to live with and I have my children that are growing up that are still living with me luckily good luck x

        • It can indeed be more frustrating than anything else! I hope that your seizure frequencies decrease and you get to remember all the good times with your loved ones x

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