Has anyone else been awake/aware during part of a tonic-clonic seizure? I really need some comfort.
What happened yesterday was unlike anything I’ve ever experienced, and I’m honestly having a hard time processing it.
My timeline:
2020: First tonic-clonic (grand mal) seizure.
2021: Second tonic-clonic seizure and diagnosed with frontal lobe epilepsy.
I was seizure-free for almost 4 years. I was on Keppra at first, then switched to Depakote and did really well on it.
November 2024: Switched back to Keppra because Depakote was causing bad hand tremors.
March, May, and July 2025: Had breakthrough seizures after drinking alcohol. I completely stopped drinking after that, Vimpat was added to my Keppra, and I was almost one year seizure-free.
Yesterday, just 2 days before my one-year mark, I had what I was told was a focal seizure that spread into a tonic-clonic.
The part that’s really messing with me is that I remember some of it.
I remember the seizure coming on and trying to speak. I remember my boyfriend carrying me from outside to the couch. I remember him talking to me and trying to comfort me. I remember trying so hard to answer him, but I couldn’t speak or move. I could hear myself making noises, and I remember feeling like I couldn’t breathe. I genuinely thought I was dying.
Then everything went black.
The next thing I remember is waking up in a hospital bed. I was told I had another tonic-clonic seizure in the ambulance and they had to give me rescue medication. I don’t remember any of that.
I also didn’t bite my tongue or lose control of my bladder, which is different from some of my previous seizures.
This was, without a doubt, the most terrifying seizure I’ve ever had. I can’t stop replaying it in my head, especially the part where I was aware but trapped in my body.
Has anyone else remembered part of a tonic-clonic seizure or been aware during the beginning of one? Even if your experience wasn’t exactly the same, I’d really appreciate hearing it. I could really use some reassurance that I’m not alone.