NEAD Non- Epileptic Attack Disorder

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Hi

​does any one know of any support groups around london Buckinghamshire for NEAD please

 

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  • Posted

    Dear Shifty,

        I live with the label NEAD. Had my first seizures over two years ago. I have read the book, seen the movie and am wearing the t-shirt. It you want to talk, I am here.

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    • Posted

      Hi Mary

      Thank you for your message... I'd love to talk. I was diagnosed last yr but been having seizures for the last 18 months... they started from no were. I'm still trying to find what is causing them... I've been admitted to hospital so many times and they treat me crazy... most recent admission was just last week... I'd love to here your story.. people don't understand... I feel the only 1 who really gets me is my neurologist.

      Kind regards

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    • Posted

      Dear Shirty,

         Seizures can just happen. I was talking with my daughter when I was lying down on my couch. She said mom, I can tell that you are about to have a seizure. I said no I feel fine. She was right. I went straight into a tonic than a clonic. No warning. Usually I get a visual warning, seeing the color lime green plusating in patches than a tonic. I have been having seizures for over two years now. A month ago I had just one. I have been label NEAD by my doctor. She takes care of my other physical needs but not my seizures. This part of me is something she doesn't want to deal with. One time she asked me if I had any resent trama in my life. I said yes, dealing with my co-work begin hit by a car right beside me when we were walking together across a cross walk. The car went inches past me and hit her out reached right leg. The doctor started crying. What's wronge with this picture? I told her my co-worker is still alive and a tough lady. She had sugery and is walking with a metal plate in her leg.  We all live with terrible things that have happen in our lives unless you live in a bubble. Even than the bubble could break. Shifty, I here for you.

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    • Posted

      Hi Mary

      Thank you for your reply.

      Yes I have been asked similar questions but nothing traumatic has happened in my life... when my seizures started I was the happiest I'd ever been... it's so bizarre... I'm still gettin my head around it. I get warnings sometimes not all the time... I get a feeling of like I'm on a roller coaster... an overwhelming feeling of sickness... jus hits me or it can linger 4 a few days.... I've not had a seizure now since Last month which is great for me... do you have seizures often?

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  • Posted

    Dear Shifty,

       I have seisures every so often. I had a seizure two months ago. The whole seizure thing is way out in left field. I also get a warning but not always. I am out of it for a few days after having one too. I just get on with life. I do get a bite down about it but soon come around to my old self. Doctors don't have all the answers! I have read the book, saw the movie and now am wearing the t-shirt. I was getting seisures when Ifly in planes. Was carried off upon landing  on a air chair. I still fly and I haven't had another seizure on any more flights but it can always happen agan. Not having a seizure is wonderful.

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    • Posted

      Hi Mary. .. I understand. It's awful.. your right doctors don't have answers... they are learning through out experiences.. I have seizures pretty much everywer to. I feel very upset when I have them but when I don't I just get on with life and appreciate I'm not having them 😆😆😆
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