Epilepsy Talk

What was your first seizure like?  | December 12, 2025

I can remember being in the shower, washing my very long hair.

It was one of those old-fashioned showers with a heavy plate-glass door and a stainless steel handle that you had to turn to get in and get out.

There were 4 water jets…three coming from the side wall…and a shower head in the ceiling.

All of a sudden, it felt like my blood was rushing out of my toes.

As all of my energy drained out of me, I thought: “I’m going to drown.” 

Then, as I fought with the locked door handle to get out, I realized: “I’m going to die.”

With one last push, I managed to turn the handle, before I went down.

And thankfully, my head landed on the floor, outside of the shower.

I was terrified.

But, I was alive.

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4 Comments »

  1. Brian W. Refford's avatar

    I think I was experiencing focal seizures long before I had a major tonic-clonic seizure. I had dyscalculia, but I attributed this to my lack of ability with numbers or sheer stupidity and olfactory hallucinations. My first major seizure occurred when I was 17. My mother jostled me awake and asked me to drive her to work. I complained that I didn’t feel well, but she insisted. On the way home I had a seizure and crashed into a light pole. I awakened in an ambulance bloodied and unaware of what had happened.

    Liked by 1 person

    Comment by Brian W. Refford — December 12, 2025 @ 10:11 AM

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    • Phylis Feiner Johnson's avatar

      Oh Brian. What a terrible awakening to the reality of seizures.

      How many years have you had seizures for?

      How are you being treated?

      Is it successful?

      Like

      Comment by Phylis Feiner Johnson — December 12, 2025 @ 10:26 AM

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  2. Ed Lugge's avatar

    I really don’t remember everything because I was only three years old. What probably happened was I was getting scared for no reason and looking for mom to hold me.

    Liked by 1 person

    Comment by Ed Lugge — December 12, 2025 @ 2:07 PM

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  3. Phylis Feiner Johnson's avatar

    It must have been incredibly scary. Sort of like a visit from the boogy man. 😦

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    Comment by Phylis Feiner Johnson — December 12, 2025 @ 2:11 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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