Information about non epileptic seizures and Non Epileptic Attack Disorder.

Jacob’s Story

By on 1 July 2015 in Stories

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 having a seizure during an EEG I heard a nurse say over the top of me “is it a real one, or not?”. The implication that what I was experiencing was false or not ‘real’ put my healing process back by a long, long way as I struggled with myself to try and be better by forcing myself not to have them. Of course, all that happened was that they got a lot worse. (It’s for this reason that I feel quite strongly against the term “pseudo-seizures”. Pseudo comes from the greek pseudes, meaning “lying” or “false” and NEAD is neither.)

Our minds are pretty amazing places and they’ve got some pretty clever systems for keeping us sane as we experience the world around us. For some of us, myself included, the world we’ve experienced has put our brains through a rough ride and it’s had to use some of it’s safety measures to keep us going.
A neurologist who specialises in NEAD (Dr Singhal in Nottingham) explained it to me like this- when I was a child and experienced bad things, my young mind couldn’t cope and so I dissociated. I took my mind to another place, thinking of other things, anything but the situation I was in. This then became a default coping strategy and so, later in life, when things got rough again my brain fell back to this pattern. My subconcious mind that took the reins because what I was experiencing, consciously or not, was too much to handle..

When I started experiencing the attacks as an adult, I was in an abusive relationship with caring responsibilities that stretched me to (and often past) my limit. I was low, but in denial about my sadness because I feared what I might lose. Through talking therapy I began to realise that the attacks were a signal that things weren’t right in my life. They were happening all the time (dozens and dozens in a week, for weeks at a time) because my life was more than I could handle. More than anyone should have to handle. As I started to make changes in my life, the attacks changed too. Things got worse before they got better, as break ups and house moves and upheaval are bound to be stressful, but they did get better and they continue to get better as I allow myself to take care of myself.

Bit by bit I’ve made positive changes, internally and externally. Being kind to myself in my own head is the biggest change that I made, and it’s the quickest to implement (although not quick to be good at!). I avoid the word “should” because it is nearly always a negative. I’ve learned to identify that horrible voice that tells me I should be better, or happier or more successful and tell it to stuff itself! Through the process of finding safety and balance in my life, when I have an attack I can now usually see quite clearly why it’s happened. Usually because I’ve done too much or not been kind enough to myself (for example if I’m feeling worn out and needing some time off, being kind to myself would be letting myself stop, but still that nasty voice comes and tells me I’m lazy and *should* carry on).

As time goes on I am able to do more and more without triggering an attack and my hope is to be seizure free in the not-too-distant future. The seizures are unpleasant, there’s no two ways about it. I get the migraines and the nausea and everything, and the likeliness is, I’ll be susceptible to them for the rest of my life. But in some ways I feel lucky to have them as they are my mind’s way of communicating that I’m struggling- and then it’s just my job to listen.

Tags: ,

Subscribe

If you enjoyed this article, subscribe now to receive more just like it.

Comments are closed.

Top