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yvette9989
yvette9989

I've been having NEAD for over three years before it was officially diagnosed properly. I am 47 years of age and a married woman with one daughter and one grand daughter. My frustration at the lack of information available is complete because it wasn't diagnosed until 29 of march this year.

0 likes, 3 replies

3 Replies

  • dan40016
    dan40016 yvette9989

    Posted

    Dear yvette, I find it better to concentrate on what my life is now. It seems seizures are difficult to diagnose, lots of other things could be at fault. 

    I was told I had Meniere's disease for almost twenty years. I had seen several different doctors. Always the same. I was almost done with the mess. Now with the proper medication I have my life back. You are young - lots of time to enjoy life. I wish you many good years.

    Dan 

    Dan

  • joanne14827
    joanne14827 yvette9989

    Posted

    I was diagnosed in June this year after being admitted to hospital following a seizure where I lost my memory - didn't recognise my husband of 20 plus years, or my children. Have been suffering with NEAD for almost 5 years without knowing what it was! Docs and "specialists" fobbed me off, until I saw a Neurologist who knew what they were about, they have referred me for CBT but waiting list is around 18months long!!! CBT may  not be final answer for me, may just have to live with it. Am applying for PIP, waiting to hear if I can get it. Haven't been able to work since onset of NEAD, and can no longer go out on my own, or drive because my seizures never have a warning. Frustrating for a 42 year old mum of three to be totally dependant on others, Even my kids have to help cook dinners if a seizure takes me out. I hate it!

    • yvette9989
      yvette9989 joanne14827

      Posted

      You have my total sympathy because until it is diagnosed its difficult to understand and that goes for family members too. I was told that Mindfulness can be helpful.
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