Posts Tagged ‘Health’

September 22, 2009 4

Learning to live with Epilepsy – Part 2

By in Health

Two months after my last seizure, I met with a consultant at St George’s Hospital who kindly informed me, in no uncertain terms, that I have epilepsy. It may be that my seizures are rare, intermittent etc. but they are, nevertheless, of significance. I don’t really know why I would want to share this publicly, but it seems to be the best way to express how I feel. And I don’t particularly know how I feel. I have more tests to go through: a 40 minute MRI, and a deeply attractive ECG (see pic), but today confirms what I suspected: that I must make some permanent lifestyle alterations.

I’ve not really had a drink since the seizure, choosing to stay at home and play X-Box instead. It’s cheaper, and less painful. It also means I piss less and spend less time ranting about the world and how it conspires against me and my drinking partner(s).

My consultant sensed I was ‘reluctant’ to take her suggested course of Tegretol (Carbamazepine). I really don’t want to put something like that in my body for two years, to then come off it. My seizures only occur once every four during intensely stressful times, so this would seem a pretty pointless exercise. After a little research on the ‘net, I found this potential side-effect she neglected to mention: “There may be a small increased risk of suicidal thoughts and behaviour in people taking antiepileptic medicines such as carbamazepine for any condition.” Nice.

For those of you who have experience of, or are interested in, the complications of epilepsy, the starting point of my seizures would appear to come from the temporal lobe before spreading to the rest of the brain. This is helpfully referred to as a ‘short-circuit’ in the brain, which serves to explain the physical reactions that follow. Prior to a seizure, there is an aura. This, in my experience, is a feeling of heightened perception pertinent to the part of the brain the seizure is occuring. Therefore, with me, it’s around words and sounds. It’s an unusual and disturbing sensation, but intriguing. Apparently, it’s also common to experience Déjà vu at a significant level, but this can be at any time – not just before a seizure. Obviously, déjà vu is not reserved strictly for epileptics, otherwise Tony Scott would probably not have made his disaster of a film in 2006.

The biggest decision for me was ceasing to try to make a living from music. My main driving force for almost 20 years  now, I can no longer justify or sustain that dream and all the intense feelings that come with it. It’s not that I don’t want to do it; it’s just that it never worked out for me. Still, there are other things in life – like Batman : Arkham Asylum.

No boozing, no drugs, and no driving (banned for a year). The partying was winding down for me anyway, with my last drug binge some way behind me now. As a 34-year old, I have to admit that physical and psychological health is now of primary focus. Perhaps it always should have been, but then – that’s part of the joy of being young and testing your limits.

Now it’s on to phase two. And all delivered in a confessional, easy-to-read blog. How terribly modern.

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July 21, 2009 16

Learning to live with Epilepsy

By in Health

Though I run the risk of this being the least interesting post written, I thought I should record the recent events of the past two days.

At some time early on Monday morning, aged 34, I experienced a ‘Tonic Clonic’ seizure. My last known episode was at least nine years ago and though I can’t recall many details, I remember being completely lost in the flat I was sharing; walking into my flatmate’s room to ask who and where I was. Unnerved by that, I had some tests (CT Scan and EEG) at the Royal Free Hospital, but never received any results; so I assumed all was well.

However, Monday’s seizure was entirely different as my wife, Kate, witnessed the whole event. She was awoken by my presence taking up more space than normal, causing her to to turn on the light and get out of bed  to see what was happening. As she did, my seizure began – lasting approximately two minutes. Again, I have no recollection of this. What I do remember is sitting on the sofa downstairs with an oxygen mask on, speaking to a paramedic. Kate tells me that after the seizure, during which I attempted to swallow the duvet, she put me in the recovery position before calling the emergency service. As she did so, I  came round and started exploring our flat – spending time looking at and admiring a pair of boots I already own.

Before I went to bed, I was already in a creatively heightened state: flurries of  ideas were surging through my brain setting neuro-transmitters alight creating an electrical storm. I went to the bathroom three times before I could even get off to sleep which is probably just as well as the bladder can be relaxed as the subject moves out of the clonic state of seizure.

I remember everything after climbing into the back of the ambulance. I don’t recall being frightened, though I am now. The staff were exemplary as were the doctors and nurses and St George’s Hospital, Tooting. My tongue and the walls of my mouth are still sore today; I am physically exhausted and my muscles ache from the violence of the seizure.

There’s no real explanation for this, and there are millions of epilepsy sufferers the world over who deal with such occurences on a daily basis. I have been asked not to drive for a year, and have been advised that there will be more tests and possible medication to come. It’s weird, though, as I’ve had no such episode in almost a decade. So why now?

I can guess why. 2009 is becoming a year that represents a massive change in my personal development. Priorities have changed, my job is less secure, my direction is unclear. As in my mid-20s, my brain is having to deal with more complex issues than it has had to in some time. It will take a few weeks to shake the feelings that I sit with now, but I am pleased that there are support groups I can turn to on the internet; videos I can watch, family, and people I can call. Though I may be anonymous, I don’t feel alone.

I will be updating this mostly music-oriented blog with my journey through epilepsy alongside the usual witterings. This event represents a substantial change for me and it is one that, with support, love and understanding, I believe can be successfully navigated.

Epilepsy Action Website

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