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Hello! My Name is Amy

At seventeen years old, I got first grand mal seizure, but I worked through the seizures not knowing what was going on until one of the coworkers saw my seizures. Then she told me that her family has the same thing. She told me straight forward that I need to see a neurologist and that's how I actually found what was going on with my body.

Has anyone else shared a similar experience?

  1. Hello Amy, I hope you are well. As a kid growing up I was having Petit mal seizures regularly. Just like you I didn't know anything was wrong and when they would occur, I just kept going about my buisness as best I could. Since I didn't know any different, I just assumed everyone had a hard time thinking sometimes.

    Then, when I was 16, one of those Petit mal came on in the locker room before gym class and, just like always, I thought it was normal and powered through. So, I got dressed and walked out onto the court with my friends.

    Next thing I know, I'm slowly waking up on the floor surrounded by EMT'S, feeling like I had just come back from the spirit realm, and all the other kids were huddled together quietly on the other side of the gym.

    That day I had my first Grand mal seizure and learned that everything I believed to be normal about my perception of consciousness, in fact was not.

    That was a hard lesson to learn.

    Epilepsy can be hell or it can be a gift. We were handed hell; and it can be tempting to give up and live there, but if we put in that work we can earn something that almost no one else can possibly understand.

    1. Hi Amy,

      I had a similar experience. I started getting teeny-tiny frequent yet short seizures in 2019 where I'd have difficulty speaking or understanding what others said and I thought it was from stress. It wasn't until 2 years later when I got my first tonic-clonic seizure, well, three actually not very far in time from each other and during all three I was alone at home.

      When the first one hit, I was at my desk working and before I knew it, I woke up on the couch 45 minutes later unable to remember how I got there. I was exhausted and realized my tongue hurt. I knew later that I bit both sides of it. I didn't know what was it that I experienced but I did my best to forget about it. I got the second seizure while asleep and fell off the bed, which woke me up. That also caught my attention yet, again, I didn't proceed to investigate it.

      Then, I got the third one, the most savage of them all. I was in the hallway, suddenly I got an aurora and blacked out. I woke up 30 minutes later on the bathroom floor, with severe pain in my head and exhaustion all over my body. Apparently I hit my head against something and there was a little wound slightly bleeding. I could barely walk back to my room which kept spinning all night long. I was terrified.

      That was when the shit hit the fan for me. When I told a friend of mine who is a neurologist, she asked me to do an EEG and that's how I knew I have epilepsy. I've been on medication since then, didn't get any such seizures, thank God, yet when I miss my dose, feel stressed, or have problems sleeping, I get cognitive impairment, sudden fear and anxiety and recently I've been experiencing problems with reasoning, memory, and a bit of visual hallucinations.

      1. Hi Amy,

        I haven't had that experience. I was 9 years old when I had my first seizure. I didn't know what it was, all I knew is I have seizures now. Lucky for you, you had a coworker who could identify what was going on with you. That's amazing! I hope you were able to learn about epilepsy.

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