Learning to live with Epilepsy – Part 2

September 22, 2009

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.

Related posts:

1. Learning to live with Epilepsy
2. Pendulum – Live at Brixton Academy (DVD)
3. John Lennon – Car Salesman
4. AC/DC live at the O2 arena
5. Nirvana Live At Reading – 1992

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