talking about it

By riverkings Latest Activity September 6, 2011 at 8:23 am Views 1,884 Replies 4

riverkings

I found an interesting new web site called TalkAboutIt.org it is put together by the 'Heroes' star Greg Grunberg who has a son with epilepsy. After watching a little of the site it made me think.. if you had the opportunity to tell the world about your epilepsy what is the one thing you would want them to know?

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Replies (4 replies)

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  • Kodak_Kit
    Kodak_Kit April 28, 2012 at 4:45 pm   

    I was just told by my neuro that I have a 99% chance of having epilepsy…that in her honest option I have it based in my seizures…there waiting too officially diagnose me next week after my EEG…I'm scared and need HELP what do I need too know too get through this!? Thanks

  • kaysara
    kaysara September 13, 2011 at 7:59 am   

    What would I want the world to know about my epilepsy - I find it a very difficult thing to write about. I would prefer not to have it to tell the world anything.

  • kaysara
    kaysara September 13, 2011 at 8:06 am   

    A neighbour in Ireland, his daughter has epilepsy and she is downs syndrome. He asked me what I felt when I had a grand mal, was it very painful? He and his wife worried about their daughter as she couldnt communicate. I assured him in was quite painless, in fact it was being in oblivion and one had a great restlful sleep after the seizure. I did tmanage to convince him somewhat and he was quite happy with my reassurance so I have one good aspect to tell the world about - yes?

  • RhondaDB
    RhondaDB October 6, 2011 at 10:20 am   

    kaysara. one thing most people have trouble with after a seizure of any type is communicating.Seizures affect areas in the brain. When I come out of a seizure, it's scary, not knowing what happened during the seizure. I had a nurse who calmly spoke to me, telling me what happened and assuring me I was ok. I'm sure his daughter is confused, unsure, afraid, due to that.