Epilepsy Talk
How were YOU first diagnosed with epilepsy? | March 9, 2026
I almost drowned in the shower.
It had three round shower heads on the wall with one more huge one overhead. And a heavy plate-glass door that was like trying to get out of a vault!
All of a sudden, I felt the blood rush through my toes (that’s what it felt like) and I knew I had to get out. Or drown.
It looked like it was going to be option #2. I couldn’t turn the handle. I kept trying, but I was on my way to never-never land.
With one last push, the door miraculously opened and I landed with my head right over the door sill. Body still in shower.
Pretty dramatic.
But, it wasn’t the first or the last time I passed out.
I fell all the time. Up the stairs, down the stairs, standing still.
I walked into walls (and broke my nose), doors, poles, anything upright.
But everyone thought I was just clumsy. Which I was.
But with a surgeon for a step-father and a psychologist for a step-mother, you thought they’d be a bit clued in.
Maybe they were. Maybe they weren’t.
But when I was diagnosed — at the insistence of my father (at least HE was paying attention), I was told by one and all in my family that I had “crooked brain waves”.
They never mentioned the “E” word. And I never knew any better.
Isn’t denial a wonderful thing?
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Epilepsy Talk 
My first seizure was about 10 years ago. I was attempting to climb aboard our boat and fell into the water! The dog immediately jumped in after me and tried to save me. Then my boyfriend jumped in and I woke up with Paramedics taking me to the hospital. Ugh!
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Comment by Annie Buchanan — March 9, 2026 @ 12:37 PM
How scary! But how wonderful to have a dedicated alert dog.
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Comment by Phylis Feiner Johnson — March 9, 2026 @ 12:40 PM
I was three years old and I was getting scared for no reason. They didn’t happen too often and they were mild so no one was worried about it. Then when they started coming more often and stronger, my pediatrician told my parents it could be epilepsy. Fortunately, my parents got smart and started sending me to neurologists.
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Comment by Ed Lugge — March 9, 2026 @ 5:57 PM
It must have been frightening watching those seizures accumulate. Whatever age you were.
Happily you had caring, concerned parents.
Maybe that’s how you turned out so well! 😊
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Comment by Phylis Feiner Johnson — March 9, 2026 @ 6:02 PM
I was three years old and had just had a 105 fever. When I had my temporal lobectomy, that was when they found out the cause of my epilepsy was the fever.
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Comment by Ed Lugge — March 9, 2026 @ 6:13 PM
Wow! I don’t know who to feel worse for – you or your parents.
At what age did you have your temporal lobectomy?
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Comment by Phylis Feiner Johnson — March 9, 2026 @ 7:49 PM
I had my surgery on December 11, 2000. I was 42. My parents, sister and a brother had passed away already so I looked at them as a team cheering for me. Three months ago was 25 seizure-free years since the surgery and I celebrated it with every friend and relative.
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Comment by Ed Lugge — March 10, 2026 @ 1:31 PM
Good to have a cheering squad, wherever they may be!
And what power! 25 years and counting…
(I guess they must love you a lot!!!!)
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Comment by Phylis Feiner Johnson — March 10, 2026 @ 2:44 PM