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TurtleQueen

742d

Does anyone else have occipital lobe epilepsy? Or any type of epilepsy? I'm feeling pretty lonely having never met anyone else with it.

Top reply
    • LadyTauriel

      740d

      I have temporal lobe epilepsy and it took 11 years, 2 brain surgeries, and trying almost every med in the book before my seizures were under control. It's a nightmare of a disease and you're always welcome to message me. I'm a pretty open book

    • Phrrya

      740d

      I have epilepsy, idk which of the lobes is having the problems but I'm happy to talk at all if you want to

    • LadyTauriel

      740d

      I have temporal lobe epilepsy and it took 11 years, 2 brain surgeries, and trying almost every med in the book before my seizures were under control. It's a nightmare of a disease and you're always welcome to message me. I'm a pretty open book

    • Kelkat8

      740d

      Hi! I have TLE and experience some minor hallucinations from time to time as well. I was VERY recently diagnosed but I’ve had the majority of my symptoms as long as I can remember.

    • TurtleQueen

      740d

      If you've had an EEG, sometimes the stickers are only placed on the top of the head and not the bottom. My first EEG was when I was 7 and they only placed them on the top, but that's not where my epilepsy is located, mine is on the very back on my head/brain. So, when they finally found it, I was 15 and had been told I was faking it since I was 2. Know your truth and push to make others see it too

    • Amiela

      740d

      I know exactly how you feel

    • signature_sauce

      741d

      i have epilepsy, they can’t find anything wrong with my brain though.

      • Lethean

        741d

        @signature_sauce my state epilepsy foundation isn’t far from me. They have told me that’s one of the most difficult parts of this . In my case I have a brain injury so they know where all the activity is coming from. I wish you well and good fortune In finding a reason.

        • signature_sauce

          741d

          @Lethean i’m hoping technology will advance in the next 10 years and we can finally figure out what’s wrong. i’m not really worried about treating it anymore since my meds work, but i want to know what caused this big change in my life

    • Lethean

      741d

      The they’ve been EEG correlated so at the minor ones I need to start my safety plan.

    • Lethean

      741d

      Hi, I have temporal lobe epilepsy that has lots of activity at the point of the occipital lobe.

      • TurtleQueen

        741d

        @Lethean Do you get hallucinations too?

        • Lethean

          741d

          @TurtleQueen not often. I’ve had minor ones and some were complex and detailed.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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