Epilepsy Diagnosis the Long Road to Health

So what happened next?

Life. 

Higher Education, boyfriends, contraception, work, happiness, sadness, tears, joy, anger, grief, fear, laughter.

Life happened next. In a nutshell when I finally meet my maker or return for another round on the cosmic wheel (depending  on your perspective) my tombstone will read ‘It wasn’t dull’.

A lot has happened in the last 33 years. A good half of which was spent being quite unwell, a great half of being unwell was spent being very unwell.

But the purpose of this blog is not for me to write an autobiography on being ill. This would take a considerable amount of time, and detract from talking about something much more interesting – how to get better.

When I say get better I do not mean cured, or in control fo my health, body, mind etc.

I think the best way to sum it up is: I became more aware of what leads to poor health and in my case in particular seizures.

As a result I am able to live with my health condition as a whole person.

In order to explain how this could happen I am going to start with someone else’s story.

‘Teach us to sit still’  A Sceptic’s Search for health and healing by Tim Parks

This brilliant and insightful book is not for the faint hearted. It is not a comfortable read. I have spent the last 2 days reading it and anyone who has read it will be aware that the first part is far from relaxing. I challenge anyone to read it and still feel comfortable sitting down. I became extremely aware of discomfort in my ‘derriere’ as I leaf through from cover to cover.

This is a tale of pelvic pain. Unexplained pelvic pain. Every test known to mankind couldn’t provide a reason for this man’s pain in the pelvis.

This autobiographical account follows the author on his journey of self exploration as he undertakes the mission to address his relationship between pelvic pain and his mind and body.

How does this relate to epilepsy? (because obviously the first place you look for epilepsy is your pelvis right?)

In my personal experience it relates to epilepsy for the following reasons;

When I was first diagnosed with epilepsy, everyone spent a great deal of time concentrating on finding something wrong with my head.

They CAT scanned me, X -rayed me, EEG’d me, ECG’d me (ok so that my heart), MRI’d me. They took blood, and made every attempt physically possible to find something wrong with my head.

Despite experiencing generalised seizures throughout childhood only one EEG trace ever showed anything that could be construed as ‘abnormal’.

This was despite spending much of my teens falling to the floor unconscious and head banging.

One MRI scan in my 20’s showed a tiny scar in my left hemisphere, which according to the consultant was typical of 1 in 10 people my age (basically, nothing to write home about). It didn’t explain why I was having seizures.

Other EEG’s in my 20’s drew a blank. No squiggles. I felt like the consultant was looking for a pulse in my brain. No heartbeat, no heart? No squiggle, no brain! simple!!! Or in my case no sighting of the ghostly phantom epilepsy.

The science of EEG – like looking for the Higgs Bosum?

Epilepsy EEG diagnosis is a bit like the science behind the Hadron Collider at CERN. It is a bit hit and miss, with a high margin for error and still very much at the experimental stages (but they don’t tell you that when your wired up to the machine…)

And so, throughout the  course of my childhood and into my 20’s I grew up with the sense that epilepsy was specifically a brain problem. This meant that there was something wrong with my head.

I don’t think I was the only one to think about epilepsy this way. In the west we generally focus in on the area without taking into consideration the ‘whole’.

It was for me as if my health problems began and ended at  the base of my skull.  As far as body image went, I had been guillotined (let them eat cake!).

To make matters worse at one point, during a worsening in seizure activity, one epilepsy nurse suggested I was suffering from panic attacks.

At the time the consultant neurologist’s answer to poor seizure control was ‘if it isn’t working keep increasing the dosage until it does’.

This strategy had one very direct effect.  I couldn’t feel my body. I couldn’t think straight actually, but lets concentrate on my body for now.

Looking back I am pretty certain that by 26 I hadn’t been able to feel my body since I started medication aged 13 1/2, if ever at all.

13 years is a long time to be decapitated.

There are a few billion neurons in the human body. Let me tell you right now, the miles of wiring that attach your brain to your body to not stop at the top of your spinal cord.

Did the headless horseman ever find his head? Or did his head ever find his body?

Eventually, in the spring of 2010 the consultant finally took an EEG with squiggles on it.

The squiggles he would expect to see in an epileptic. The squiggle location pointed to epilepsy of a genetic origin.

I can’t tell you how pleased I was. It was like finding the holy grail. It was such a relief to have an explanation of sorts that didn’t involve scars in my head or a tuma.

By this time I had been exploring the mind-body connection for some time.

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