Our Stories
On this page, people have been kind enough to share their stories. Some are people who have NEAD and some are from people who care for people with NEAD.
We hope they help you understand the condition better.
Jacob’s Story
When I first experienced the attacks that I now know to be NEAD (or as I prefer to call them, dissociative seizures) I thought I was going mad. After I was told that it wasn't epilepsy and that it was all in my head, an internal struggle began where I even doubted myself- was I putting them on? Even whilst ...
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Clare’s Story
I was diagnosed in Feb 2014 with Somitisation Disorder and Non Epileptic Attack Disorder. This became apparent when I started with severe lock down symptoms where my neck would spasm and my whole body would stop working and the ultimate attack was in August 2013 when I had such a bad attack, I lost the use of my whole left side ...
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Jayne’s Story
Basically, for 16 months my son kept passing out and having what I thought were epileptic seizures. An EEG ruled out epilepsy. We struggled for such a long time; we couldn't leave him on his own as we were so scared of when the next one would be. I managed to video one of the seizures and showed it to ...
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Richard’s Story
I was first diagnosed with epilepsy thirty years ago, although it is now believed I have had this condition most of my life. I am now seventy. There have always been times when I went into a dream world, or had blank spots when I missed information. Life was full of misunderstandings. School was difficult, but I later sustained a rewarding ...
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Melanie’s Story
I am 43. I got told in November 2014 that I had NEAD. I was told I had epilepsy 20 years ago. I was put on lamatragine,which they kept upping until I was taking 400 grams a day. Then in July 2015, they decided to do an EEG and it came back as no electrical seizures. They then sent me to Addenbrookes ...
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