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.

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I’m afraid it’s going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign – Take Epilepsy ACTION – to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that’s a pretty shocking statistic. It’s about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses – the “typical” seizure):

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
C CushionCushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N NeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person’s first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist’s appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks – in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren’t going to fix my current problems.

I’m still not entirely sure how I feel about all this. I haven’t been told that I don’t have epilepsy – the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I’ve been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist’s opinion, especially as there is some evidence to back it up and there’s a chance of “fixing” the problem a little, I’m not entirely convinced that all the seizures I’m having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I’m left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn’t stop them, then I’ll know it’s more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don’t think they’re the priority at the moment.

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.