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View Diary: Epilepsy Awareness- What is a Seizure Like? (131 comments)

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  •  Fully agree (5+ / 0-)
    Recommended by:
    otto, commonmass, FloridaSNMOM, Neevah, No Exit

    I often start a diary solely based on title without paying attention to the author.  After getting about four paragraphs into it, I wondered who wrote this...such good writing. Scrolled up and...oh it's otto.  Of course.

    Apolitical first-person stories are the gems of dkos.  I had never even thought about the experience of having a seizure and am glad for the insights provided by this diary and the subsequent comments.

    Like commonmass, I've never had a seizure but there are two things that resonated with me.  The first,

    I still don't "feel" the time, but I'm beginning to get an idea.  
     When I played football and had concussions, the most disconcerting thing in the moment was having no connection with time. I could count fingers, I knew where I was and what happened but I didn't know when I was.  A coach would check me on the sidelines and I couldn't tell him what day it was or what month or even what part of the year.  I realize this may not be the same experience, though.

    The second most pronounced aspect of the concussions was a sense of deja vu, which came up in the comments to the diary.  Having a deja vu feeling was my self-awareness that I just had a serious impact.

    The brain is remarkable.  

    •  aw, Schucks nt (2+ / 0-)
      Recommended by:
      commonmass, FloridaSNMOM


      by otto on Mon Mar 17, 2014 at 10:02:50 AM PDT

      [ Parent ]

    •  Time (7+ / 0-)

      I totally agree with your comments about time.

      I have two completely different experiences with epilepsy. From ages 10 to 22 I had absence and complex partial seizures, or what used to be called petit mal and psychomotor. The blank stares and picking at clothes type. I had no idea they were coming on and no memory of them after they happened. Not to be drama queen, but putting on the crown anyway, I ceased to be a sentient being for I don't know how many seconds every time it happened. Medicines never fully controlled it. I don't know how much time I lost, between the seizures and sleeping due to the depressants. Every day after school I came home and slept for two hours. Mom would come home after work, come into my bedroom and wake me up, saying hi and having a short conversation. I'd wake up later and see her downstairs, asking her when she got home. She'd tell me she got home right before we talked earlier. I never remembered any of it. Ever.

      So at some point in my early-idiot 20s I weened myself off my meds. The doc hadn't helped my yearning to get off the AEDs because half the time he said I could probably come off the drugs in a couple of years and the other half he said I would probably be on them for life. Being at college and not having my family asking me if I had taken my meds every day was a relief. After I graduated, I went to another neurologist and had an EEG, and it showed no abnormal activity after I'd been off the medications for over a year, so I felt vindicated.

      Twenty years later, two years ago, I had my first tonic clonic seizure. Like all tonic clonics, there's no consciousness. It was during a nap anyway. When I woke up though, I was in a world of wtf. I was supposed to drive myself and my 7 month pregnant co-worker to training 3 1/2 hours away the next morning. I hadn't even packed and my husband knew it. I wandered into the living room and he started asking questions. Later we learned I was in an extended postictal state. Then? We thought I was having a stroke or something. I couldn't generate my own thoughts, I just repeated what he said. He tried to get me to tell him when I had to be at work the next day, and when I had to be at the training location. I just kept saying the same time to each answer.

      Needless to say there was no training the next day. One weird thing about that night was that I remembered all the visuals during the postictal state, but none of the verbal stuff, except what my husband said. Time was also wonky. The three hours in the ER wasn't "felt," like you've said. I was outside of it, moving into and out of rooms and corridors. The last thing I remember was standing at the one manned cubicle in a loooong hallway, one end dark, paying some lonely dude $100.00 copay in the middle of the night. The next morning I found my paperwork and the diagnosis was "mental problems."

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