Wednesday 27 June 2007

How epilepsy affects me

When I was first diagnosed, I went to different sites to see how people were treated (medically and otherwise) and how they dealt with it. What I soon realised is that no two cases are alike. There are only a handful of treatments, but there are a million different symptoms. I could never seem to find anybody who described the same symptoms as me. For what it's worth, here are mine in "pain-in-the-ass"-order, but bear in mind that I find it extremely difficult to describe exactly what is happening both during and after the seizure

  • A slight "blip". In the middle of doing something (even as banal as watching TV), for a brief moment, I get a spell of dizziness which passes with no lasting effects.
  • Losing the plot in the middle of doing something, talking, listening or reading. This is the most common form. It's "OK" when I'm at home, but in company it can be a nightmare. This has happened to me a few times in front of customers and I have had to come clean. Once I tried to keep going, but couldn't clear my head. I won't do that again. Often, I can feel it coming, and afterwards I often feel tired and often irritable.
  • Jamais vu. This one is quite off-putting. Imagine being in a place where you've been thousands of times, but not being able to find your way around it. Last week, I came out of the bathroom and could not work out which direction I needed to go in order to get back to the bedroom. Often, I feel like I'm in a place that I've never been before.
  • Plain old loss of consciousness. This has only happened to me 3 times in 10 years. The "best" was when I was in Vancouver at a conference. In the morning, I set off for the conference centre. Walking down the main street, I suddenly felt sick in my stomach and then remember waking up with a crowd of people standing around me. Pretty scary. Someone asked me if I wanted them to call an ambulance, so I thought what the hell, I've got travel insurance. In the ambulance, I was completely lucid and got talking to the ambulance driver who it turned out had worked in the same suburb of Brisbane as my uncle. At the hospital I went through the usual hold-your-hands-out, walk-in-a-straight-line tests. They tried to put a drip in me (god knows why), but couldn't get it in: "are you an intra-venous drug user". Err, no but I'm quite tempted if you've got anything on offer...
I can't put my finger on any one trigger, alcohol (god forbid), chocolate (surely not), stress (possible), exercise (possible), tiredness (could be), random collection of these and others (undoubtedly).
I've tried several combinations of treatment over the years, none of which have worked. More on these later.

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