Friday, 20 February 2015

the brain cloud; or Complex Post Traumatic Stress Disorder

{tw for non explicit reference to csa}

I've been meaning to write this post for a long time now, but found it too hard to do, for reasons which I trust will become apparent as you read on.  The phrase brain cloud is from a film - Joe Versus the Volcano.  The lead character, a hypercondriac, is diagnosed with a brain cloud - a fictitious illness - for reasons too complex to explain here.  No, I'm not a hypercondriac, but I do seem to specialise in complicated, and as it took several years to get a diagnosis it felt appropriate. 

Spring 2011 - everything was finally falling into place.  Smiler's health was stable, he was settled at school, I had a permanent contract with the council doing a job I enjoyed and was good at, Noah and Petal were fine, Mr Manley and I were great, and there were no crises looming. 

So my brain decided this was the perfect time to make a point.

I went from a team meeting at work one Wednesday morning to A&E with head pain so intense I don't even have words to describe it.  One of my pupils was fully dilated and not reacting at all to light, and after years parenting Smiler I knew this could be a big deal.  Within a couple of hours I was having an MRI, and being talked to about emergency brain surgery and consent for resuscitation.

But the MRI didn't reveal the life-threatening leaking aneurysm they were expecting, and days later there was still no explanation for what was going on.  I was discharged, but in so much pain that I was readmitted a fortnight later having lost over a stone as I couldn't keep any food down.  I was prescribed heavy duty painkillers, and sent back home, where I slept for 23 hours a day for eight months, and then started having seizures.  The cardiovascular and neurological investigations revealed that at times my blood pressure dropped dangerously low, but there were no indicators of epilepsy, even though several medical professionals who had witnessed the seizures were in no doubt that there was something going on.  By this time I'd been medically retired from my job - I couldn't drive, had no warning when I might be about to lose consciousness, had no short term memory and often started the same conversations several times a day.  The kids were forgetting who I was - at least, who I considered myself to be.  I felt lost, dependant, useless.

On days when I had the energy I started doing my own research, and realised I was a prime candidate for what used to be called Conversion Disorder - so named because of the way mental distress was 'converted' into physical symptoms.  I struggled against this idea, resenting the implication that what I was experiencing was related to the mental health issues I'd danced with over the years - after all, I was having seizures, experiencing multiple neuro symptoms that were physical, tangible - real.  How could this be my mind?

It was a slow realisation, kicked off by the neuro specialist mentioning Non Epileptic Attack Disorder or non epileptic seizures.  It explained the seizures, recognising that I had no control, no choice in what was happening to my body, but that it wasn't caused by rogue electrical impulses but instead linked to the functioning (or malfunctioning!) of my nervous system.  One of the things I had most difficulty understanding was the timing.  It seemed illogical that my brain was going to pieces now - everything was finally settling down!  I'd coped with a crappy childhood, years of physical, sexual and emotional abuse, taking my father to court, Smiler's diagnoses and health crises - and now, now my mind decides it's had enough?

In fact now, a year or so later, it is all so much clearer.  It was precisely because everything was stable that the seizures and the neuro stuff started.  I've been told since that if I was less high functioning then I'd be diagnosed with Borderline Personality Disorder, but that is probably more helpful to think of myself as having Borderline traits in the context of Post Traumatic Stress Disorder (PTSD) - specifically complex PTSD.  I coped with each crappy childhood and teenage experience - the violence, the rapes, the emotional trauma - by ignoring it and concentrating on something else.  When Smiler was born I threw myself into researching his various conditions and dealing with services.  I made sure that I was always so busy that I didn't have time to think about the emotional implications of anything.  It was only looking back that I was able to see what had been going on.  I had three babies, did a post grad diploma and got married in the space of thirty months.  For the next four years I was a parent governor at three schools, ran a small business from home, worked part time, and got a second degree.  My coping mechanism of ignoring the problem (sometimes,  confusingly,  by immersing myself in the facts and figures side of it) had worked at the time, but it was now time to deal with it all.  Easier said than done. 

• • • • •

I find the C-PTSD diagnosis easier to explain than the NEAD bit - maybe because it's in the public consciousness (no pun intended)?  There's the whole mental health aspect too, and it gets twisted up in my mind with fault, blame and shame.  Many of the ways in which C-PTSD impacts my life are common mental health issues - while I no longer have a specific eating disorder my attitude to food and eating is seriously disordered; I experience panic attacks with no identifiable triggers; insomnia; hypervigilence; depression, mania, dissociation.  I still have seizures along with many other neuro issues - concentration and memory difficulties, vertigo, fainting, nausea, visual disturbances, tingling or numbness, and auditory hypersensitivity.

I'm sure I'll write more about all of this, but this was only supposed to be an introduction after all - my coming out post if you like. 

My name is Lucas, and I have a brain cloud.

But maybe I need to start using the proper words...

My name is Lucas, and I have complex post traumatic stress disorder.

• • • • •

Useful resources

When the seizures were diagnosed as non epileptic a couple of websites were recommended to me - the first, Non Epileptic Attacks, was useful but dealt only with the seizures, while the assortment of other neuro issues were causing me a lot of distress.  As well as being hugely reassuring, the second, neuro symptoms, discussed all the other issues I was experiencing, and explained the interplay of these as well as the background.  In terms of understanding PTSD, I found the overview of the various functional and dissociative elements really helpful.  The NHS choices website explains PTSD, but although complex PTSD has similar elements there are also significant differences, and I found the RC Psych website really helpful in grasping this, as well as a number of quite research based US sites.


  1. Saw on twitter that you asked for comments, so I came to read. I can't think what to say except thanks for writing, also I wondered were you scared when the crippling brain stuff was happening?

    1. Hi Fiona, thanks for stopping by and taking a moment to say hi! Funnily enough, I wasn't scared - I just reverted to type and ignored it as much as I could! I think I was a bit oblivious really - I just wanted an answer - any answer - so that I could get on with getting over it. I had no idea that four years later I'd still be unable to work or drive or be as independent as I had always taken for granted. I was seriously ill when I was 19, apparently hours away from organ failure, because I'd ignored significant pain and lots of gastrointestinal symptoms, and ended up in hospital for three months with pancreatisis and jaundice because I'd been ignoring gallstones and turning yellow! It seems I'm very good at sticking my head in the sand when it comes to my health!
      Thanks for commenting Fiona - sometimes the internet can be a bit of a black hole!
      Take care

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