Epilepsy Talk

Tell us about your first seizure… | October 14, 2021

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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  1. Reblogged this on Ken's Devotions.


    Comment by Kenneth — October 14, 2021 @ 12:47 PM

  2. My first seizure I recall was in 1971/2 when I was 11/12yrs old. I was on holiday in our caravan in Scotland with my parents and brother and sister when I suffered my first Grand mal when either going to sleep or waking.

    Liked by 1 person

    Comment by Kenneth — October 14, 2021 @ 12:53 PM

  3. Have you had subsequent nocturnal seizures?


    Comment by Phylis Feiner Johnson — October 14, 2021 @ 12:55 PM

  4. Don’t remember the first ONE but I know the first few were back in 1961. I was getting scared for no reason and grabbing people’s legs and asking them to hold me. I do remember the difference in time being held. If it was my mom, dad or sister, they held me a long time. If it was one of my brothers, they kept asking if they could put me down.

    Liked by 1 person

    Comment by Ed Lugge — October 14, 2021 @ 2:40 PM

  5. I have focal epilepsy. I was in middle school, probably seventh. It was a heavily overcast day and we were outside at recess walking through the parking lot. I got a weird feeling and looked up and it seemed like the sky was coming downwards onto me. I said something dumb like “it’s the end of the world” but I wasn’t actually scared, it was more like fascinating, I felt part of something important in the universe, and then, like a transition in a film, everything opened up again in my vision, but the others were still talking to each other and apparently noticed nothing.

    Liked by 2 people

    Comment by Hetty Eliot — October 14, 2021 @ 3:07 PM

  6. My 1st ever seizure I have NO IDEA what I was feeling or what type it really was, as I was 5 MONTHS old, Thanksgiving Day 1960 that happened, and I was to have had like 2 or 3 more before NEW YEARS DAY 1961, Later that month I was diaagnosed as having petit mal seizures, & was put on drugs & have been on them ever since, drugs do not work to stop them no matter what age I have been taking them for almost 61 years. Needless to say THANKSGIVING DAY is NOT my favorite holiday, and Christmas isn’t much either, when that is to be a time of year for MIRACLES to happen, but never seems to happen much for me. That’s why I am looking daily for the RAPTURE OF JESUS to happen asap or like NOW. 61 years of this is ENOUGH FOR ME !!! as was 61 months when I was 5 years old & started feeling & seeing MORE OF what was happening to me after thinking at 3 years old by 5 they would go away. Right,,. Been HELL ever since.

    Liked by 1 person

    Comment by James D — October 14, 2021 @ 3:31 PM

  7. Sounds like your seizures are neither Thanksgiving Day (What’s to give “thanks” for?) friendly nor New Years (Another year of this?) friendly.

    It’s been a long haul for you James. I wish you the Rapture you wish for yourself.


    Comment by Phylis Feiner Johnson — October 14, 2021 @ 3:40 PM

  8. My first seizure was when I was dancing. My mum had told me that I was screaming but I couldn’t hear anything but White snow (strong static) I couldn’t see either. Our family fur baby was around after everything calmed down and I dropped to the floor.
    There was a lot of drama that carried to a ex family doctor that said that epilepsy was just “a female thing” and a lot more. Found a new doctor and a neurologist both part of the same hospital.

    Liked by 1 person

    Comment by Tabitha — October 14, 2021 @ 6:06 PM

    • Good thing. Did your new docs recognize it as Catamenial Epilepsy?


      Comment by Phylis Feiner Johnson — October 14, 2021 @ 6:50 PM

      • No, I wasn’t diagnosed with “Catamenial epilepsy” sorry I haven’t heard of those. Yet since I was diagnosed originally my Epileptic seizure level has risen to three levels higher then the original!
        As stated Status Epilepticus was the most extreme level that I was put in a Coma unknown time.
        From that I haven’t seen my family!
        Or the people that warned me about that building.
        I’ve judged as a drunk and a drug addict. Then everything was bottled into what was wanted to be as Mental Health in 2018- 2021.
        But then when I was diagnosed with Epilepsy I had a great family doctor who advocated for me and a few Neurologists in the same hospital that worked with each other not against as it seemed.
        So losing that “it’s only a female thing!” doctor was the best thing my mum and I advocated between each other.

        I was active and continued dancing until the break ins of that apartment! I can say that I have tried surfing.

        Liked by 1 person

        Comment by Tabitha — October 15, 2021 @ 6:18 PM

  9. It certainly wasn’t my goal to get everyone’s attention with my first real seizure, but I went down with a bang! It was during the stage rehearsal with choirs about to sing in Lincoln Center (NYC). I lost consciousness, hit the stage with an echoing thud, and lost bladder control. When I regained awareness I had many faces looking down at me with mortified expressions. But a retired doctor came by and said, “oh–she’s fine,” and waved everybody away. He never knew that was the start of something that’s now lasted for 30 years. But, of course–no problem: I still sang during that night’s concert.

    Liked by 2 people

    Comment by Deb — October 14, 2021 @ 9:17 PM

  10. Bravo Deb. You’re a marvel! Not to mention a very resilient lady. “And the show must go on!”

    What are you doing now?


    Comment by Phylis Feiner Johnson — October 14, 2021 @ 10:45 PM

    • That seizure on stage was during my first year of college, and fortunately I had two passions–music and English–and got degrees in both. So though I certainly still do things with music, my life work has been in editing, a much safer place to be if you don’t want all eyes on you. 🙂

      Liked by 1 person

      Comment by Deb — October 15, 2021 @ 12:51 PM

  11. 21, nothing ever wrong woth me, on holiday with the family in my home country UK, then 3 days later I came round in my home hospital! Seems I kept having seizures, was taken around to hospitals but we finally packed up and went home. I’ve no idea of what happened, but my epilepsy’s never followed rule-books, have ptsd which might have had some effect but I’ve never found anyone to investigate.

    Liked by 1 person

    Comment by Gail Barry — October 15, 2021 @ 3:50 AM

  12. This article may interest you Gail:

    Post Traumatic Stress Disorder and Epilepsy https://epilepsytalk.com/2021/09/02/post-traumatic-stress-disorder-and-epilepsy/


    Comment by Phylis Feiner Johnson — October 15, 2021 @ 9:08 AM

  13. Mine happened while I was in my shed with my cousin watching a sporting event. We had just returned from snowmobiling and were having coffee. I just remember him trying to wake me up, we went inside the house and ppl tried to her me to go to the hospital but I refused only to wake up there the next day. After having multiple seizures over 5 days I was intubated and airlifted to the nearest trauma centre, fun times, lol…Have to keep a sense of humor thru it all as I’ve went into status and been airlifted a couple of times.

    Liked by 1 person

    Comment by Dennis — October 15, 2021 @ 9:10 AM

  14. Sounds like you’ve been through a lot, Dennis.

    Do you think the seizures might have happened as a result of head injuries, sustained while snowmobiling?

    Take a look at this article and see what you think:

    Head Injuries and Seizures https://epilepsytalk.com/2021/01/15/head-injuries-and-seizures/


    Comment by Phylis Feiner Johnson — October 15, 2021 @ 9:25 AM

    • I highly doubt it, I’m not an aggressive rider and always wear my helmet. The only real head injury I’ve ever sustained was when I was a kid and fell and hit my head on the ice but that would’ve been 35 years before this. Maybe a few minor things while playing hockey but nothing of any significance. My epileptplogist doesn’t think its related to any head trauma as my seizures start in the occipital lobe and quite often generalize to the entire brain.

      Liked by 1 person

      Comment by Dennis — October 15, 2021 @ 9:58 AM

  15. Ahh yes. I was brushing my hair in the mirror and the last thing I saw was myself falling backwards. I had just gotten out of a bath and was thankful that I was fully dressed before it happened 😂

    Liked by 1 person

    Comment by Abbey Montgomery — October 16, 2021 @ 2:17 AM

  16. My grand mal seizure occurred in June 2018. I was at the front of my house gardening and my daughter called me for lunch and after calling me three times and I didn’t answer she decided to approach me (I had my back to her). She later said that I was standing rigid with gardening tools tightly held in my upright hands and that I had started to sway. Fortunately, she managed to support my fall otherwise I may have struck my head on the brick wall surrounding the garden. A passer by called an ambulance and I was taken to hospital. I woke up in the ambulance. I spent four days in hospital and was put on ant seizure meds. About six months ago my Neurologist reduced my meds to a maintainence dose. I have petit mal seizures on occasions but have been told by two Neurologists that I don’t have epilepsy but the grand mal and petit mal seizures are caused by severe anxiety. I have had all the required tests and have now taken myself to a mental health clinic for a few weeks stay to work on my mental health and hopefully get control of my anxiety which may then eliminate my petit mal seizures. I am now taking medication for my anxiety. Looking forward to being free of the petit mal seizures and controlling my anxiety so I can get back to a normal life.

    Liked by 1 person

    Comment by Lyne — October 18, 2021 @ 6:57 PM

    • Boy, I bet that gardening incident was scary. Almost the same thing happened to me, except that I landed with my face planted in the dirt.

      Good for you for getting thoroughly tested and being so proactive. The world needs more people like you!


      Comment by Phylis Feiner Johnson — October 18, 2021 @ 7:26 PM

  17. Is always interesting to me how each account from such a wide variety of people can be so different is in part why a seizure disorder is so much different than many other neuro or medical issues. I have read or spoke with 100’s of peoples accounts of this also.
    FIRST ? I I truly do not know, have had t.c. szs for 28 yrs and even that comes into question because prior to that I had had what called “convulsions”induced by alcohol or drug abuse.
    My first documented t.c.type szs. came after an afternoon of drinking and a drunk neighbor threw a 1/2 a brick at meas I was running away,hitting me in the back of head. I patched myself up,washed my hair and my mom gave me ride to local pool hall,I went there and left to go across the street to a convenience store for cigarettes.as I was leaving, I recall feeling light headed,like when over heated and that panic attack feeling, fortunately I fell in the only soft grass area 🙂
    I had 3 back to back t.c. szs then no recall of the actual szs. woke up 2 days later in the hospital,had slurred speach, 1/2 my body was drooping numb, similar to what a stroke patient has but is different condition with szs. I forget the name ? but unlike a stroke victim the condition goes away. I had sz. at least once a week or a few week that entire summer,I was diagnosed but did not follow any program or take the meds.was hospitalized or put in jail but was always treated a just a side effect of drinking or a combo of the heat I worked at a refinery and as a roofer.
    I say I wished I knew because it took yrs of learning but now “feel” I have had Epilepsy my whole life,but were partials or other types that were not as noticeable,have experienced a long list of check offs, so long I don’t see,feel them as some altered state,deja vus,the spatial thinking,short memory lapses,was a sleepwalker as a child and later as an adult,the things people might call a panic attack I now “feel” were me having partial szs or my “aura” also the smells,tastes in EXTREME forms.
    I do now feel having a lot of those things happening when younger helped prepare me for the often violent t.c. szs. I still have ,so is maybe another reason they have never scared me?
    Thanks. my best to any one who deals with this. Peace Rick

    Liked by 1 person

    Comment by wichitarick — October 21, 2021 @ 11:04 PM

    • Oh Steve, what a terrible life. First abuse, then accidents, and repercussions. I feel for you and hope you find your way.


      Comment by Phylis Feiner Johnson — October 22, 2021 @ 9:54 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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