We had joy, we had fun, we had seizures in the sun…

Non-Epileptic Attack Disorder – just rolls off the tongue. This is the polite descriptor for what used to be called ‘Pseudo-Seizures’ and also ‘Hysteric Seizures’. NEADs is an odd thing to have. And from what I’ve been told, very odd and quite entertaining to witness*. In my case, I feel the ‘pressure’ building up in me, and then I have to give in to whatever happens next. I try to get on the floor so I can’t break things, including myself. And then I shut my eyes and things start to happen. I can hear people, but I can’t respond. Sometimes I dribble and jerk and shake. Sometimes I contort in ways I can’t make my body undertake when conscious. Sometimes the episodes are over in 10 minutes, others go on for 45. My head usually jerks like a convulsion. That’s my sign in myself of what’s happening – when I want to jerk my head. It’s not a usual movement for me because since an I had whiplash in 2002 I’ve not really been able to consciously move my head freely. However, I have been told that in seizure I can almost do an owl/Exorcist head spin.

These little known episodes have been part of my life since 2004 and were most likely a response to the stress of finishing University and starting my first job. They are, for me, a stress response. But this does not mean they can be regulated and prepared for. I cannot predict them.When my Mother was dying last year, I did not have them. But in the last months they have returned. And in the last two weeks they have been very familiar – like a creepy uncle. Indeed, in the last week, they won’t leave me alone. I’ve had two today, which is why I’m writing this.

In the early days, the seizures used to reduce my spinal pain, indeed, I used to end up pain free afterward. It was glorious. And then there were the weird visual things that happened during them. There I would be jazzing around all over living room carpet, Mum talking at me and I unable to answer while the Magical Mystery Tour was happening in my brain. Swirly visuals, odd sounds, all my favourite music playing in my noggin and the ability to breathe really freely through my wonky sinuses. Damn, it was good. But now they do nothing but make me feel a bit sick, weak and shaky. I can’t even go straight to sleep after – that was another bonus.

There is no treatment for them. I have Diazepam which has calmed them – can make the ‘pressure’ feeling recede, but it’s not guaranteed. And when I’m having them as frequently as now, I can’t tell if they’re going to happen or if I’m going to be able to control the feeling and squish it down until it passes. I was sat volunteering** on Tuesday when the urge built up and I desperately wanted to jerk my head, it was so powerful – wish to smack my head into the desk. I squished it down and down with the result that I felt angry, depressed and exhausted. Today was spent in bed because I felt so flat and deflated, but I have still seizured twice and can feel the weight of an attack on my left shoulder – a little Seizure Goblin. Let’s see what Mr. Goblin does.

NEADs info: http://www.nonepilepticattacks.info/2_what.html

*My family have found them disturbing, but outsiders – friends – have wanted to film them as pieces of Performance Art.

** I volunteer in a Charity Bookshop. The shop was particularly crowded and this impacted on the seizure urge. There was a sick young man pacing back and forth on one spot, and his actions began to make me feel anxious. I must remember this in future.

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