Wednesday, 27 October 2010

Epilepsy - it's complicated.

So, I had another seizure this evening. This one was probably non-epileptic in origin. W timed it, and it was approximately six minutes long. I couldn't quite believe it when he said that; it seemed much shorter to me. But then, my sense of time goes right out of the window when I'm having a seizure. Sometimes it seems like no time at all, while during others the seconds drag by in a slow procession.

I haven't mentioned the "non-epileptic seizures" (dissociative seizures is a better term, but there apparently is no hard and fast term yet) here before. It's rather complicated, and of course the inevitable accusations of fakery arise in some people's minds. My epilepsy nurse and the diagnosing neurologist seemed pretty convinced I do have epilepsy though, and one of my EEG (electroencephalogram) readings showed spike and wave activity, which is (again, I feel I ought to say "apparently"; I am not a nerologist!) indicative of epilepsy. Unfortunately for me, life got complicated (don't you hate it when that happens?) and I seem to have mix of both epileptic and dissociative seizures, which are rather hard to separate at times.

What does this mean? Well, for one, my AEDs (anti-epileptic drugs) will only actually stop the epileptic fits. Hence my talking to the epilepsy nurse about lowering the amount I take, as the only way to tell if I'm taking more than I need is to reduce my prescription and see how it goes. Fortunately I appear to be in a position where any bad reactions (such as more seizures) will just be an inconvenience and not serious. Wow, I never thought I'd be glad to be unemployed. (Though I would be on maternity leave right now even if I wasn't.)

Ultimately, no one is entirely sure what causes dissociative seizures, though often trauma in childhood can be a factor. Things like abuse or neglect have apparently shown a correlation, though fortunately neither of these apply to myself. "Trauma" of course covers a wide scope, including the pysical kind such as major accidents, so it's possible that some sort of trauma, be it psychological or physical, has caused me to have these. Not knowing for certain, I prefer not to jump onto that bandwagon of speculation. I do know that stress tends to bring my seizures on, which is possibly why working full time has become a problem for me. Having two young children doesn't bring them on as often as you would expect though, so who knows. I'd love to have more EEGs (despite the fact that the electrodes are stuck to your head with a waxy paste which takes ages to wash out of your hair), and try to sort out what's what, but unfortunately, they're rather expensive, and who knows how long I'd have to be plumbed in before they had a record of every seizure type I've experienced to analyse. It's just not going to happen, and I'm lucky to have had as good an amount of medical attention as I have.

Since I started having seizures (I'm not entirely sure when that was; in hindsight I may have been ignoring what were actually partial seizures for years), they have generally manifested themselves in one of three ways (as there are over 40 types of epilepsy, that isn't as large a variety as you might think). First, there are the aforementioned myoclonic jerks, my "twitches". These are the ones which the EEG picked up associated brain activity for. Then I have fairly brief (as in, up to a few minutes), convulsive seizures, where movement usually focues in my left hand and/or right leg, and I do occasionally thrash around a bit. These could be either; the rhythmic motions my hand and leg make could well be part of a complex partial seizure (one where only part of the brain is having unusual electrical activity), or they could not. The third type are my longest seizures (and the most likely to be dissociative), which have gone on for up to and over an hour before now. They involve long periods of stillness (where I appear to be asleep) mixed with convulsive bursts. I've injured myself a good few times having the latter two of these types, mostly through hitting my head or a limb, but occasionally from scratching my own face. In my seizure today I began fiercely rubbing my eye, enough to make it quite sore.

Only on a very few occasions have I come close to losing consciousness during a seizure (as my awareness is so impaired I can never really tell whether I have or not), which of course makes my seizures harder to explain to those who know only the stereotypes. I have also had to explain to kind but misguided people before now that no, flashing lights/computer games don't bother me, and it's actually quite a small proportion of people with epilepsy who are affected in this way. For a relatively common condition, there is a huge lack of awareness out there about just what epilepsy is.

No comments:

Post a Comment