Epilepsy Talk

What Was Your First Seizure Like? | May 22, 2016

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 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. M y first one I guess at 3 month,s old , so I don,t know what my first one felt like.


    Comment by michele metzger — May 22, 2016 @ 7:14 PM

  2. Probably pretty scary, since you were an infant.


    Comment by Phylis Feiner Johnson — May 22, 2016 @ 7:20 PM

  3. I was 12 (had them when I was an infant but was thought to have grown out of them). I was at the flea market with my grandmom and cousin. I felt nauseous, everything kept spinning, and I couldn’t keep my legs steady. There was a high pitch noise in my ear. I couldn’t hear anything else. I knew I was going to throw up, and tried running to the nearest trash can. I didn’t make it more than 2 steps. I woke with my grandmom praying to good not to take me from her. All in all it was a good day.


    Comment by jay — May 22, 2016 @ 8:13 PM

  4. I was working at home on the day of my seizure. About 4pm, I was feeling a little light headed so I decided to stop work for the day. A few minutes later, I went to the bathroom and was on toilet when my seizure started. I must have just blacked out and fell to the floor shaking. My wife dial 911 and they arrived quickly and transported me to the hospital. When we arrived at the hospital a few minutes later, the seizure subsided and when the rear doors of the ambulance opened, my wife was standing there and I said hello. We spent about about 2 hours in the emergency room and they dismissed me. I was weak for the rest of the day, but back to normal the next morning.


    Comment by Keith — May 22, 2016 @ 10:08 PM

    • I love when the EMTs come and then you come to in the hospital.

      Sort of the same thing happened to me. Except for, I came to just as the EMTs started their work.

      I felt kind of dumb. And they really didn’t appreciate it, especially since they were in the middle of their “routine”.


      Comment by Phylis Feiner Johnson — May 23, 2016 @ 9:04 AM

  5. probably didn’t know it happened


    Comment by Alan Bishop — May 22, 2016 @ 11:00 PM

  6. Headache after a long day. On the bikepath riding slowly.

    Time gap. Sitting down against a tree; ambulance slowly coming; asks me questions. I don’t know whe they are there. Woman (witness?) argues with them; ambulance leaves.

    I stand; leg hurts; fork on bike is bent–wheel touching frame. Start to wonder…


    Comment by philamisan — May 23, 2016 @ 5:25 AM

  7. Now THAT’s scary. That there was actually someone there and the EMTs didn’t do anything to test you.

    The witness certainly did you no favors.

    Meanwhile, I remember bicycling straight into a tree trunk and there was no one around to help.


    Comment by Phylis Feiner Johnson — May 23, 2016 @ 9:10 AM

  8. I was 12 and at a girl scout camp and I didn’t know anything0 had happen to me until I found myself at a hospital. They said it happen to me twice and thought I would be okay and sent me back and later they said another one happen and had to rush me again. Only they sent me back to my home town where I was there for 2 weeks trying to fight an infection ,doing test, and later discovered I had epilepsy and had to be put on meds and had seizures every know and then.


    Comment by Corina — May 23, 2016 @ 10:54 AM

  9. They didn’t do anything the first time, except send you home? That’s not exactly “due diligence”! 😦


    Comment by Phylis Feiner Johnson — May 23, 2016 @ 11:25 AM

  10. My first one i can remember, now that i know what seizures are, was numbness in my right pointer finger and middle finger. Didn’t think nothing of it, it took a few weeks for it to go away.

    The next time I was going to a campsite, lake of the woods, when the same fingers started getting numb and i wasn’t feeling good, so we cancel the trip to the lake of the woods and went to a closer spot after starting to feel better.

    Then I had a few drop seizures, where i dropped slowly to the ground like someone was pushing me down and i could not control it.

    Then the grand final the grand mal at work, which i went to the er room by myself, to get it checked out. I thought it was a faint spell. Didn’t think it was a tumor. Doh


    Comment by Zolt — May 23, 2016 @ 5:33 PM

  11. I don’t think it was “duh”.

    You certainly didn’t have any traditional symptoms, until the drop seizures and finally, the grand mal.

    Don’t beat up on yourself Zolt!


    Comment by Phylis Feiner Johnson — May 23, 2016 @ 7:10 PM

  12. My first seizure was a simple partial. I had DeZa Vu. for a few years. Then I was getting hit with complex partial seizures. That’s when my family noticed that I was having a seizure. So I saw a doctor diagnosed me, and my driver’s licence was revoked. Now it’s come to where if I don’t take my meds for a couple days, I go into status epilepticus. But the RNS is helping me fairly good I hope they can have it programmed where it will have my seizure’s under control.


    Comment by Shawn Wittman — May 23, 2016 @ 9:48 PM

  13. Naughty boy. Not taking your meds, knowing what the circumstances would be.

    But it sure sounds like you had a rough time prior to that.

    Why weren’t you tested before then?

    (Although I should talk. I went 2 years until someone thought to take me to the neurologist.)

    I guess your RNS came right in the nick of time.


    Comment by Phylis Feiner Johnson — May 24, 2016 @ 9:49 AM

  14. I was 16 woke up in the computer room all confused.


    Comment by Veronique — May 25, 2016 @ 9:13 AM

  15. One type of reflex epilepsy is photosensitive epilepsy, where seizures are triggered specifically by flashing lights.

    If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure.

    The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.

    And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.


    Comment by Phylis Feiner Johnson — May 25, 2016 @ 10:20 AM

    • Phylis, the descriptions that you gave for photosensitive epilepsy accurately describe my condition. Thanks!


      Comment by Keith Brown — May 25, 2016 @ 4:15 PM

  16. Nothing like good old research!

    Glad I was able to help, Keith!


    Comment by Phylis Feiner Johnson — May 25, 2016 @ 4:59 PM

  17. I am writing a book about a man who has epilepsy and is in prison, you can find out about that on my blog if you want to. I know how hard it has been for him. He was having a seizure as he was being born. The drs didn’t think he would live. He had brain surgery about the age of 12 to stop some of the bleeds. It helped but it didn’t stop them. He has been in prison ten years now. He was with someone who tried to rob a club. He ran but was still considered an accomplice. Medical care in prison is horrible. Quite often they just let him lay there til the next shift comes on because they don’t want to do the paperwork.

    As a child it really affected him because other kids – and their parents – didn’t want their kids around him, so he has suffered often from depression. So for many reasons, I am writing a book on his life, “Inside The Forbidden Outside”. I know there are many kinds of seizures and I know they can be scary – and dangerous – and a feeling of loss of control over your life. It is not easy to have to deal with that,never knowing when (not if ) the next one will hit.


    Comment by SonniQ — May 26, 2016 @ 12:20 AM

    • You might be interested in the article: “Prison Abuse”.


      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 26, 2016 @ 10:33 AM

      • I read the article. I’m beyond words. He should be out now. Do you know if he made it? Because of his seizures Jamie should be on the first floor. Dr won’t put him there. He just had another one. For men had to carry him down a flight of stairs by his arms and legs – face down. The seven staple in his skull are almost healed from the last . What made me angry is they used staples instead of stitches. There is no fat under the skin so they stapled his skull? I just had skin cancer cut out of skull and had 2inches of stitches. It hurt like hell, but staples?I’ve gone rounds with the mess unit. They flat refused his heart medicine for pericarditis. They left the form empty of the cardiologist report like he never went to the hospital. I sometimes feel helpless because they retaliate against the inmates. Thanks for pointing out the article.


        Comment by SonniQ — May 28, 2016 @ 8:14 AM

  18. I will be back – there is more I’d like to read from this site and I have a few ideas mulling around in my brain. I have just begun a news letter – 2nd issue is going out at the beginning of the month – on many issues – primarily prison issues, and narrowing it down – medical issues that are sweept under the carpet. Because epilepsy is the main medical issue Jamie deals with – although there are others, and he is in Ad Seg (solitary) perhaps doing an article by you on epilepsy that can be accessed through the newsletter would be an interesting read. Everyone on my mailing list right now knows about Jamie’s epilepsy, but most people really don’t know much about it. Let me know what you think. You can email me if it is easier. sonniq56@gmail.com


    Comment by SonniQ — May 26, 2016 @ 12:30 AM

    • SonniQ, you are welcome to borrow any articles from this website as long as they are properly attributed.

      The purpose of this blog is to educate and inform, because the more people who learn, the better off we all are.

      So think of this as sharing (but not pirating) and spread the words, thoughts, intentions around.


      Comment by Phylis Feiner Johnson — May 26, 2016 @ 10:38 AM

      • Absolutely. It’s why I have everything I write copyrighted. Never bite the hand you share with.


        Comment by SonniQ — May 28, 2016 @ 8:02 AM

  19. LOL!

    Believe it or not, I don’t copyright my articles, because they’re meant to share. (Except for the big magazines who “pirate” my articles. Now THAT pisses me off!)


    Comment by Phylis Feiner Johnson — May 28, 2016 @ 9:02 AM

  20. Sonni, unfortunately I have no idea what happened to the prisioner.

    It was a letter from a distraught mother who wanted the situation to be brought to light.

    YOUR story sounds quite horrible.

    Truth or fiction?



    Comment by Phylis Feiner Johnson — May 28, 2016 @ 9:14 AM

  21. Don’t remember much. I was 5 when that happened. I had 3 GM’s. First one at home on the couch I think. Then I was brought to my doctors office about half hour away. I vaguely recall people over me, likely at the hospital.. Waking up at the hospital with my arm pinned down caused me to freak out. I didn’t know where I was or what was going on…why couldn’t I move my arm?


    Comment by Travis — May 28, 2016 @ 10:53 AM

  22. Sounds like a true trauma. Why WAS your arm pinned down?

    I know I had restraints put on me during a terrible grand mal a few years ago.


    Comment by Phylis Feiner Johnson — May 28, 2016 @ 11:07 AM

    • No clue. Likely that had an IV in it and didn’t know how I would react. Even the records I have for that hospital stay are a little light. At least the surgical notes are detailed.


      Comment by Travis — May 30, 2016 @ 10:44 AM

  23. Going to the fridge for something to drink had migraine which was normal. Next thing I knew I was in the ER with my husband, father and Doctor standing over me. I was 22 years old, had an EEG done which was off the chart for the migraines it had suggested seizures but at 22 no seizures no meds. It ran in the family I later found out. One year almost to the date my first seizure. Mine were always few and far between. Now in my 50’s I have been put in coma to come out, it’s a hospital stay, memory loss. Not fun because now my husband of 38 years is my caregiver.


    Comment by Debbra — May 29, 2016 @ 6:20 PM

  24. Debbra, I’m sure it’s not fun for your husband, but neither is being being put in a coma to come out. (Both have happened to me.)


    Comment by Phylis Feiner Johnson — May 29, 2016 @ 6:25 PM

  25. Travis, The IV situation sounds quite believable. I know, I was trying to rip out my IV at every opportunity because my seizures were so violent.


    Comment by Phylis Feiner Johnson — May 30, 2016 @ 12:02 PM

  26. My first seizure was probably May 2010(saturday morning) but the last memory I had was me sleeping friday night and waking up monday morning(not on my bed in my room but in the hospital ward.

    Liked by 1 person

    Comment by Natasha510 — June 2, 2016 @ 9:25 PM

    • Sorry, I miscalculated the year. It was 2006 when i had first episode and its been control since 2010. I was 12 yrs old when i experienced my first episode.


      Comment by Natasha510 — June 3, 2016 @ 8:45 PM

  27. Natasha, are you still having nocturnal Seizures?

    The Nightmare of Nocturnal Seizures



    Comment by Phylis Feiner Johnson — June 3, 2016 @ 11:07 AM

    • I’m not having any episodes nowadays. My medicine help me a lot to control the attack.


      Comment by Natasha510 — June 3, 2016 @ 8:37 PM

  28. Natasha, You mentioned that you were 12 when your seizures first started.

    It was those good old hormones kicking in.

    The same exact thing happened to me. I started having violent seizures at 10 and now they’re well controlled.


    Comment by Phylis Feiner Johnson — June 4, 2016 @ 9:12 AM

  29. My first seizure I felt like I had been run over by a bulldozer. I woke up with bruises on my arms and thighs and a bloody mouth. My neck hurt, and my vision was blurry. I got up, and almost fell as I was unsteady. I was home alone. I stayed in bed until I felt I could get up safely, three hours later.


    Comment by Norma Rivera — July 7, 2016 @ 9:07 PM

  30. Sounds quite horrible and scary. My heart goes out to you, Norma.


    Comment by Phylis Feiner Johnson — July 8, 2016 @ 8:53 AM

    • My first seizure was a simple partial. It was deja vu. You know, something you’ve never seen before looks pretty familiar. Then several years later I started to have complex partial seizures, and now if I don’t take any of my meds for a couple days. I’ll have a grand mal seizure and go into status.


      Comment by Shawn Wittman — July 8, 2016 @ 10:57 PM

  31. Shawn, You might be interested in this article:

    Déjà Vu or Prescience?



    Comment by Phylis Feiner Johnson — July 9, 2016 @ 9:21 AM

  32. I had a woman in Vermont take my son
    She was found I had to travel to Berlin Vermont to go to court is the first time I knew I had a seizure myself I awoke at the courthouse with my head on the steering wheel could not remember driving I had to go win over whether not to file charges I had legal custody of her daughter Who had an infant it was not my son’s daughte Who had an infant it was not my sons Child I just took something on the young teen she showed up at my door at a very young age I allowed them to take the child only because I had to struggle working that affected my living and my children were falling in love with this child I knew it was the right thing to do but I was foggy the feeling of how did I get here just ge and my children were falling in love with this child I knew it was the right thing to do but I was foggy the feeling of how did I get here just can’t
    Understand I kept saying but also was told that I had a seizure as a teenager after I had her for Maddoc understand I kept saying but also was told that I had a seizure as a teenager after I had A Tbi I kept denying that I didn’t have epilepsy so apparently it was much younger I kept denying that I didn’t have epilepsy so apparently it was much younger in life I was dealing with sales of my business my whole front yard was filled with people I was feeling nauseous and extremely dizzy my best friend and her husband were there I was not able to Speak I remember going into the bathroom awaken on the floor bruises from bouncing from one side to the other then I just kept getting worse and worse whenever I felt funny I would run to the bathroom so my children would not see speak I remember going into the bathroom awaken on the floor bruises from bouncing from one side to the other then I just kept getting worse and worse whenever I felt funny I would run to the bathroom so my children would not see him sadly it kept getting worse and worse I would have grandmas in front of my children dropping on the floor eyes open frothing at the mouth I felt like I was living in the ambulance took a long time to get the proper diagnosis that I found very difficult to deal with I was given the wrong medication for a very long time literally drooling upon myself not understanding if you’re taking medication that does not work go find a new neurologist


    Comment by judyjudy01985 — July 9, 2016 @ 10:26 AM

  33. Judy…what eventually happened with you…the son and the daughter?


    Comment by Phylis Feiner Johnson — July 9, 2016 @ 4:15 PM

  34. NATURAL & EFFECTIVE TREATMENT TO SEIZURE (EPILEPSY): Our son has temporal lobe epilepsy, He has seizure and had a grand mal with rage episode (8 men to hold him down), Our son’s seizure is constant throughout the day according to EEG results. We had used several medicine which include: 600 Epilem 100 topolex 150 Epitec X2 Daily Dopoquel and cilift, Keppra, Topomax lasted for about 3 days, but I put an end to that due to my son losing weight and being lethargic. I recently got a natural medicine that handle Epilepsy with no side effect. It is an herbal medicine. William Herbal Product is the only effective treatment I have ever used.
    Note: There is no cure for epilepsy yet but effective treatment of Epilepsy is available. for more info, contact Dr.William with this Email: drwilly37@gmail.com


    Comment by Jill Grosh — July 16, 2016 @ 9:02 AM

  35. Jill, thanks for the recommendation.


    Comment by Phylis Feiner Johnson — July 16, 2016 @ 10:57 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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