I’ve had some time to think about my appointment with the neurologist now, and to be honest, I’m more confused than ever. I went into the appointment somewhat resigned to having new tablets lined up in front of me, and I walked out with a completely different answer.
I knew before that not all of my seizures were caused by epilepsy, and hey, I can cope with that, even if every doctor ever seems to give me a different explanation for the phenomenon, and a different name. So far the one common label I’ve been handed (amongst a myriad of differing descriptors) is “dissociative seizures”, so I’ll stick with it for now, although I have no idea if that gives the condition I have a name at all. The impression I got the other week was that this whole aspect is a dawning revelation to the medical profession, having arrived only in the last few years. I’ve yet to brave google with any real seriousness and try to find out much more than a basic descriptor.
I guess the trouble I have with the latest prognosis – and I’d like to stress that it is a minor trouble – is how this will affect the way other people view me. At the moment, I still have the “epilepsy” tag hovering around me – that first EEG had its pesky unusual activity associated with a myoclonic jerk (the one seizure type which has pretty much stopped since I started taking Keppra). For that reason, the neurologist doesn’t want me to stop taking the tablets yet, even though I am probably taking far more than is necessary to stop what I used to call my “twitches”. But I walked away (stupidly, really; I was caught up in the excitement that I might, at last, have an “answer”) without actually knowing what is “wrong” with me any more. Do I really have epilepsy? Don’t I? Am I just suffering from a dramatic reaction to stress? I should have asked her to clarify what this would mean about my current diagnosis. Was I misdiagnosed? Or was the emphasis just in the wrong place? Where do I stand now?
None of it makes me feel particularly good about myself at the moment. I mean, I guess I’m reasonably sure I actually do have epilepsy, because my notes mention an EEG picking up “spike and wave” activity, which my epilepsy nurse told me was very typical of an epileptic myoclonic jerk. So the good news, I guess you could say, is that it’s looking increasingly as though the epilepsy side is pretty darn well controlled. The bad news, of course, is that what’s left is looking unlikely to have a simple solution such as the right medication. As long as it might have taken to find the right combination of drugs, that hope was there. Dealing with something that is entirely psychological is different, and far less predictable. My life isn’t exactly short on stress, so I’ve got my work cut out for me.
The other thing which worries me is the perception of it. Epilepsy is misunderstood, but telling someone I have seizures which are not even identifiable as that? I’ve had people accuse me of “faking it” before, as though I’m some masochist who enjoys injuring myself and sabotaging my hopes of having a stable job. As awful as epilepsy is, at least it’s a known and medically (if not casually) understood thing. Now I’m looking at something which is altogether more tenuous and indistinct, with its causes and mechanics still not fully understood. Suddenly I feel even more vulnerable. This seems to have all the disadvantages of epilepsy – involuntary seizures, no driving, massive, regular interruptions to my lifestyle – but with none of the explanations that can help me, and those around me, really understand it. It’s not a recognised anything it seems. There’s now a hugely irrational part of me wondering: “What if everyone just tells me to chin up and stop mucking about? What if they don’t believe me when I say I can’t help it?”
I think I really need to see this specialist. Next time, I’m going in with a checklist, and I’m going to come out armed with as much information as I can muster. I can’t live with all these maybes hovering around me. I just want to know what’s wrong, and what I can do to try and “fix” myself.