Epilepsy Talk

What was your first seizure like? | October 22, 2022

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.

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27 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — October 22, 2022 @ 9:38 AM

  2. Discovering that my hands wouldn’t move the steering wheel and being unable to push the brake pedal. Then seeing an EMT or a police officer explaining what happened to me while the car sat on the shoulder of I-95. Luckily was going only 60 mph on a straight stretch of the highway.

    Liked by 1 person

    Comment by Jeffrey Hatcher — October 22, 2022 @ 10:46 AM

  3. I was 10, at summer camp. Our group was walking along to get lunch and I started staggering- the camp councillors said “stop fooling around- then lights out. Full tonic-clonic in front of the other kids.

    Like

    Comment by Michael Bowles — October 22, 2022 @ 12:34 PM

  4. It was 6 weeks past my 30th birthday, I remember I wasnt feeling good, like I was coming down with something, so I took a shot of NyQuil and told my fiance I was going to bed early! I immediately threw it up…. then went to bed!

    Next morning, bout 5:30am, I rolled outta bed in a full grand mal. Fiance called 911 and the first thing I even remember of that day was waking up in a hospital bed!

    Every time I would come to consciousness, the nurses would bombard me with grilling questions and interrogative gesturing, about drugs and how much weed I smoked, eyes would roll back in my head and I would go right back into the seizure! All day long I did this! For 13hours, they call it “status epilepticus”……

    Finally my fiance had to ask the doctors to get the nurses to back off! And then the only other thing I remember was that night I pulled my IV outta my arm while sleeping and the alarms woke me up to this very calm and quiet man coming into the room to help me! He was a small little dark skinned bald man with a blue patagonia jacket! He looked like a monk…. and so did his energy!

    Life changing experience….. 15 years later, Ive never been the same person since!

    Liked by 1 person

    Comment by Aaron Holmes — October 22, 2022 @ 1:48 PM

    • What an ordeal. And what a blessing.

      Like

      Comment by Phylis Feiner Johnson — October 22, 2022 @ 2:05 PM

      • I’m in UK, have focal awareness seizures, our medical staff never understand that althoughI’m on my feet I’m unconscious, fight or flight, many bad fights, nurses are worst thinking they know it all and I’m just abusing them, an evil person, even my neuro who I made a complaint about, which was taken seriously and now I’m with a very good one who really wants to help, at times you do just have to fight for your rights

        Liked by 1 person

        Comment by GAIL — October 23, 2022 @ 3:25 AM

  5. Mine always feel like my mind drifts off, and then, as if my movements get stiff. To those on the outside, I look fine, but on the inside, I feel like I’m swimming in gelatin. Then I’ll get a headache that lasts for hours.

    Liked by 1 person

    Comment by Gabriela B. — October 22, 2022 @ 4:33 PM

  6. Gabriela, do you think it’s a migraine, brought on by the seizures?

    This article may interest you:

    Epilepsy & Migraines — Kissing Cousins https://epilepsytalk.com/2022/05/07/epilepsy-migraines-kissing-cousins-2/

    Like

    Comment by Phylis Feiner Johnson — October 22, 2022 @ 4:54 PM

    • That’s the only explanation I can think of, but I don’t know.

      Liked by 1 person

      Comment by Gabriela B. — October 24, 2022 @ 9:31 PM

  7. Words from my mom. I was red in the face, my entire body frigid and I was like trying to fight off all that was turning inside against me, and I was 5 months old. That happened all of 62 years ago on Thanksgiving Day 1960. In 2 weeks it will be 1 year without a seizure of the focal type that turns to GRAND MAL or TONIC CLONIC,, Why the name changes I have no idea. I give the credit to the drug XCOPRI which I was like 85 to 90% ready to go for a RNS, after being talked out of getting a VNS 3 years ago, so I took my time to decide WHAT DO I DO ? when I asked my neurologist,,, What other drug have I not tried in 61 years? & he suggested XCOPRI to try. Been a right choice so far, and in that time span, it seems like my moms health from 90 to 91 years old has been worse, so I guess it is now my turn for me to take care of her, knowing for 60+ years my mom has been by my side on over 95% of all GRAND MALS I ever had in my life. I have always wondered when I went into those GRAND MALS & seeing my mom near me all those times, if THAT seizure was the 1 to take me & I die, leaving my mom alone, but I am sure my sister which is 4 hours away would not let her live alone BUT a nursing home maybe would have been their choice. Now I know why I did not die from any of the seizures I had in front of my moms eyes, as I saw that fear in her eyes so many times right before I blackout. Not what you wanted to read, but the REALITY from & since my 1st seizure I had almost 62 years ago, still is a life of HELL know matter what side of Epilepsy you look at life from.

    Liked by 2 people

    Comment by James D — October 22, 2022 @ 9:05 PM

    • Bless your mom and her health. I hope she’s with us for however long she can be — comfortably.

      Like

      Comment by Phylis Feiner Johnson — October 23, 2022 @ 9:11 AM

    • Hi James,
      I read your story about your first seizure. I want to ask you what medications are you currently taking/ or what combination therapy are you currently practicing to get such a seizure free period: focal, grand mal and tonic clonic? What drugs did you take until you achieved this success? I wish you never have seizures again. I still can’t find the right meds or neurologist and I don’t know.

      Liked by 1 person

      Comment by Goro Dimitrov — October 24, 2022 @ 4:13 AM

      • I know that James has finally found success with the drug Xcopri. His diet also plays a huge part.

        Like

        Comment by Phylis Feiner Johnson — October 24, 2022 @ 9:17 AM

    • I had a VNS put in my chest in 1998 since my complex partial seizures were hard to control. I’m 67 and I read you have Grand Mal so if you’re still considering a VNS I’d recommend one as now I don’t have them as often even though I still take medication. One I’m happy about…as it’s an inhibitory (relaxing) neurotransmitter…..so it helps me sleep. So anxiety is less of a problem.
      All I remember about my first seizure is I was 18 years old, in high school.

      Liked by 1 person

      Comment by leonchavarria — October 24, 2022 @ 7:28 PM

  8. I was unaware or something, started having tonic clonic seizures on holiday with my family in England, I live in Ireland, 3 days later I came round back home in a hospital, seems I was having multiple seizures, I was 21 had no previuos things, not even an injury, my epilepsy isn’t under control, no one has any idea why it started at that age

    Liked by 1 person

    Comment by Gail Barry — October 23, 2022 @ 3:17 AM

    • Sometimes, it’s hormones, sometimes it’s life. Many times epilepsy is unresolved and there’s nothing you can point your finger at.

      Like

      Comment by Phylis Feiner Johnson — October 23, 2022 @ 9:17 AM

    • I feel sorry for you Gail no one aware of what causes your seizures.
      I got very sick while I was still in the crib with a virus in the mid – 1950’s with the infection and high fever did some damage to the myelin sheathing which gave me a poor memory, even after Dr.’s discovered the epilepsy when I was 18 years old.

      Liked by 1 person

      Comment by leonchavarria — October 24, 2022 @ 7:41 PM

  9. I have had so many, I have been battling this for over 50 years and my memory really sucks.

    Liked by 1 person

    Comment by church88 — October 23, 2022 @ 9:48 AM

  10. So scary, I’m so scared to have one in the shower, I was in bed when mines happened

    Liked by 1 person

    Comment by Erica Jimenez — October 23, 2022 @ 2:12 PM

  11. Erica, if it will make you feel any better, that’s the ONLY seizure I ever had in the shower.

    Like

    Comment by Phylis Feiner Johnson — October 23, 2022 @ 2:15 PM

  12. I was 27 years old when at my workplace
    in front of the PC, I suddenly felt a stomach aura and slipped off the chair. When I regained consciousness I was lying on the sofa in the office reception area with a huge headache. In front of me stood the doctors from the emergency medical service with a syringe of diazepam and questions: Are you epileptic?; How long has it been since you had a seizure? I was very scared and answered almost incoherently because it was my first time with a seizure and I didn’t know why it was happening. The office colleagues were very scared, but one of them moved me to the sofa in the office reception room.
    And so this is my first nightmare day of living with epilepsy. EEG, brain tomography, blood and urine tests were started. None of them showed the presence of disease. But to this day, I still have tonic-clonic seizures, which I have not given up on seeking the right neurologist with experience to minimize them.

    Liked by 1 person

    Comment by Goro Dimitrov — October 24, 2022 @ 3:55 AM

  13. I don’t know which is scariest: not knowing how you got seizures or not knowing how to deal with them.

    Goro, have you tried the diet route?

    Three Anti-Seizure Diets That Could Change Your Life… https://epilepsytalk.com/2018/02/15/three-anti-seizure-diets-that-could-change-your-life/

    Like

    Comment by Phylis Feiner Johnson — October 24, 2022 @ 9:13 AM

  14. My first seizure was numbness in my finger tips, the pointer finger and middle finger tips were numb. That lasted for a couple of weeks. After that i had a few drop down seizures. Then i had a grand mal at work and when i went to the ER, they found i had a brain tumor. UGH.

    Liked by 1 person

    Comment by Zolt — October 24, 2022 @ 10:21 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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