Epilepsy Talk

How were YOU first diagnosed with epilepsy? | March 7, 2022

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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16 Comments »

  1. Could not tell you. I was 5 months old, 2 MONTHS AFTER MY BABY SHOTS I WAS GIVEN, and my mom tells me I had a red face, & looked like I was fighting off something with my little hands in a fists position. Then 2 months later the same things happen & I was rushed to Childrens Hospital in DC, where my mom was told I had a form of petit mal seizures. At that time JAN 1061 it’s been drugs for me, all but for a few months in 1990 when my family doctor then took me off all drugs & I FELT LIKE I WAS A NEW HUMAN with not 1 side effect to live with, but today after 61+ years of taking these damn drugs, I KNOW they have ruined my brain chemistry in many ways, BUT maybe ?? this XCOPRI might be changing that, so far since NOV 9 2021 I have had 0 seizures, and I started this on the SATURDAY AFTER THANKSGIVING DAY 2021. By this time last year 2 GRAND MALS I had. STILL when a drug maybe controlling the brain chemistry & seizures from happening, that really is not what I call HEALING FOR MY CONDITION by God. I expect more from God after 61 years of hell on earth with seizures in my life, even as I know all the good things I never had from the seizure life, I also know I never did ANY BAD THINGS from having a seizure life as I had no idea before 5 months old what the hell was happening to me & HOW I was getting treated in the children’s hospital in DC. The SAME THINGS are & have been happening for the past 60 years & these 2 years of this pandemic to ruin infants & teens brains that WE WILL SEE more than 80 MILLION having seizures & MOST of them will be under 30 years old.

    Liked by 1 person

    Comment by James D — March 7, 2022 @ 11:53 AM

    • Hi: looks like we are epilepsy pals…I was given a shot against whooping cough at 4 months old and it turned out it damaged my brain (frontal lobe), leaving me in the throes of death in the hospital for about three weeks. I survived but only to experience epilepsy from that time on (grand mal seizures). I’ve been taking medication every day for nearly sixty years now. the upside to it though is that as a child you learn to cope with the condition and even though I’ve had seizures almost on a weekly basis (fortunately more often than not nighttime seizures) I can handle it and unless a person sees me pass out in front of them they won’t know I have epilepsy…medication-wise I am still on barbiturates combined with gabapentin…nothing fancy or revolutionary… from what you’ve written looks like there are some new treatments on the market that may be worth looking into… cheerio and hang in there…

      Like

      Comment by chilie — April 2, 2022 @ 3:22 PM

    • Hi: looks like we are epilepsy pals…I was given a shot against whooping cough when I was 4 months old and it turned out it damaged/scarred my brain (frontal lobe), leaving me in the throes of death in the hospital for about three weeks. I survived but only to experience epilepsy from that time on (grand mal, tonic clonic seizures). I’ve been taking medication every day for nearly sixty years now. the upside to it though is that as a child you learn to cope with the condition and even though I’ve had seizures pretty much every week since then (fortunately with the passing of time they have evolved into nighttime seizures although I still do happen to have some during the day) I can handle it and live with it. And unless a person sees me pass out in front of them they won’t know I have epilepsy… I have learned to domesticate the beast…medication-wise I am still on babiturates combined with gabapentin…nothing fancy or revolutionary… from what you’ve written looks like there are some new treatments on the market that may be worth looking into… cheerio and hang in there..

      Liked by 1 person

      Comment by chilie — April 2, 2022 @ 4:23 PM

  2. Fingers crossed for XCOPRI…

    Like

    Comment by Phylis Feiner Johnson — March 7, 2022 @ 12:22 PM

  3. I was unfortunately born with it – not healthy from the moment I came out of my mothers womb! In an incubator for 8 days, and started my first epilepsy medication from 5 days of age! I was diagnosed with epilepsy in my first week of life. And it’s been a developing epilepsy throughout my 56 years of life. At 49 years of age – I had tests like never before and diagnosed by medics for bi-temporal lobe resistant epilepsy with developing hippocampus. I had been diagnosed before but not that accurately! For 49 years – they couldn’t agree – one said left temporal lobe – others said right! Finally – they were both right! It was bi-temporal with developing hippocampus!

    Liked by 1 person

    Comment by Robert Poloha — March 7, 2022 @ 12:28 PM

  4. I was a senior at Stanford with a good job lined up after graduation. I pulled an “all nighter” fueled by lots of coffee and chocolate bars because I had a paper due and a midterm the next day. I finished up early a.m. and decided to catch a few zees. I evidently had a seizure in my sleep. My boyfriend who witnessed it told me I was nuts to go to school and I had no idea what he was talking about but couldn’t understand why my tongue felt like raw hamburger and my brain had tuned to oatmeal. I went to class anyway and stopped by the campus clinic on the way home and told them that I had a seizure in the night. They were only equipped for scraped knees and sore throats so they sent me to the university hospital where I was given a bottle of Tegretol which turned out to be worse than the seizures. That drug now has a black box warning about “suicidal ideation” but it didn’t back then. I was a guinea pig and I almost did kill myself one very hopeless night. Nobody ever said that maybe living on caffeine, sugar, and takeout pizza wasn’t a great idea. I had to figure all of that out on my own. I have now cured my seizures with diet and am almost medication free.

    Liked by 1 person

    Comment by paleobird — March 7, 2022 @ 1:12 PM

    • Caffeine, stress and the wrong AED. The perfect recipe for disaster.

      Wellbutrin is what almost killed me. ICU, two heart attacks, etc.

      Unfortunately, I’m not as vigilant as you about my diet. But I’m trying.

      And I’m happy to say Lamictal has been my savior. 99% seizure free for 10+ years!

      Sent from my iPhone

      >

      Like

      Comment by Phylis Feiner Johnson — March 7, 2022 @ 2:07 PM

  5. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — March 7, 2022 @ 1:21 PM

  6. I was first diagnosed after having a seizure at the blackboard in High School. I believe it might have been something to do with the fall from the high diving board the year before. I might have had a concussion, but back then, if you didn’t drown they just told you to go home and rest. I don’t know if you could have your first Seizure a year later though.

    Liked by 1 person

    Comment by Donna Jones — March 7, 2022 @ 4:03 PM

  7. The concussion from my speed skating accident didn’t show as a seizure until months later. And it wasn’t diagnosed for TWO years!

    Like

    Comment by Phylis Feiner Johnson — March 7, 2022 @ 4:47 PM

  8. Diagnosis was nearly a decade-long activity for me upon reaching adulthood. “We have no idea what you’re talking about and can’t find any problem in our testing,” the first doctors said. “Why don’t you just get your mind off such things and go to college?” “Fine,” I said, and did so for the next 6.5 years, earning three degrees while pretending all was well. Two years after I’d begun working full-time, the seizures took a turn for the worse and I couldn’t ignore the “no-problem” any longer and went to another doctor. “VERY interesting,” he said, after hearing my description. “I think I’ll refer you to our local psychologist” (conveniently his wife). She and I had friendly chats for months until she realized that something was more scary than she was ready to face and sent me back to her hubby. “Really?” I asked. “Could someone just refer me to a neurologist? I’m ready for the next stage of bewilderment.” So how was I first diagnosed? By finally talking that next guy into diagnosing me…

    Liked by 1 person

    Comment by Deb — March 7, 2022 @ 7:57 PM

    • Three degrees and “just take your mind off of it”? Gee. Didn’t he realize that you had a mind?

      (I always joke that epilepsy is proof you have a brain!)

      As for the “shrink” route, my step-mother was a psychologist and thought I was a psycho!

      It was two years until my father took me to a neurologist. And guess what the diagnosis was? (Duh!)

      Like

      Comment by Phylis Feiner Johnson — March 7, 2022 @ 9:51 PM

  9. Was beaten on by about 20 guys at a party, got took to hospital and found out I’d been left with a brain tumour. Started taking seizures which originated from the tumour then started taking seizures from the rest of the brain due to heavy doses of drugs that weren’t compatible with me

    Liked by 1 person

    Comment by Ross Clark — March 10, 2022 @ 6:09 AM

  10. I was in a class at the local community college. I started feeling strange and next thing I knew, I was on the floor with people standing over me. It was not a “grand mal”. Turns out I have complex partial seizures. I was 66 years old and didn’t even know older people could have epilepsy.

    Liked by 1 person

    Comment by Jenelle — March 11, 2022 @ 3:23 AM


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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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