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.
Friday, 30 September 2011
Tuesday, 20 September 2011
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):
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.
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.
Saturday, 10 September 2011
Darn.
Well, I lasted two days this time. (There is hope yet, yes?) No seizures yesterday or the day before. I did have a couple of auras, but they didn't develop into anything, and while I would normally count them, things are bad enough at the moment that auras have slipped off the radar. I'll count them more when I don't have the beggars three or four times a day. I'd spend my life writing them down otherwise!
I did have a weird occurrence this morning though. I almost fainted - collapsed in fact, but didn't black out. it was over almost as soon as it started, but I honestly have no idea what it was. It didn't feel much like a seizure, but then, what else could it be? I was very tired though, and had a lot of trouble getting to sleep last night. It could have been that I guess.
The tiredness is also probably what caused the seizure I had this afternoon. O had just thrown a whopper of a tantrum and I had successfully calmed him down by carrying him up to his room (hooray, it worked for once!). We were just discussing colour, and how it all works - there was a great deal of oversimplification and anthropomorphising on my part, but whatever it takes, right? Anyway. Sidetracking. I felt crap, and sent him down to W while I went and weirded out on the bed for a while.
I also made the mock-up of my skirt today. Now I just need to come up with some sort of waistband, take it in at the appropriate points, and cut out the actual material. Hooray! Still, with only 28 days do go, I should blooming well hope I am making progress.
...Still more worried about having a seizure and ruining the day for W than about the actual wedding itself. I guess we'll see, won't we. At the end of the day, there's nothing much I can do about it either way. I just keep on taking my tablets, noting the seizures when they happen, and hopefully the neurologist can offer me some hope in a week or so when I (finally) have my appointment. <insert deadpan laugh here>
I did have a weird occurrence this morning though. I almost fainted - collapsed in fact, but didn't black out. it was over almost as soon as it started, but I honestly have no idea what it was. It didn't feel much like a seizure, but then, what else could it be? I was very tired though, and had a lot of trouble getting to sleep last night. It could have been that I guess.
The tiredness is also probably what caused the seizure I had this afternoon. O had just thrown a whopper of a tantrum and I had successfully calmed him down by carrying him up to his room (hooray, it worked for once!). We were just discussing colour, and how it all works - there was a great deal of oversimplification and anthropomorphising on my part, but whatever it takes, right? Anyway. Sidetracking. I felt crap, and sent him down to W while I went and weirded out on the bed for a while.
I also made the mock-up of my skirt today. Now I just need to come up with some sort of waistband, take it in at the appropriate points, and cut out the actual material. Hooray! Still, with only 28 days do go, I should blooming well hope I am making progress.
...Still more worried about having a seizure and ruining the day for W than about the actual wedding itself. I guess we'll see, won't we. At the end of the day, there's nothing much I can do about it either way. I just keep on taking my tablets, noting the seizures when they happen, and hopefully the neurologist can offer me some hope in a week or so when I (finally) have my appointment. <insert deadpan laugh here>
Friday, 9 September 2011
Wait, weren't you talking about something completely different?
I have a dreadful memory.
There. It is said. Okay, I've probably said it a few times before, but I think it's time I said it again. I have an absolutely, completely and utterly, awful short term memory. I will often think of something I need to do, walk up the stairs, and have forgotten it by the time I reach the top. I have windows 7 on my computer, and so my desktop background is plastered with notes and reminders for me, and I still don't remember to do many of the things. Ooh, hold on, I've just remembered I need to phone up for my prescription. Hold on.
Right. Done that. Also got sidetracked and forgot I was writing this blog for about twenty minutes. Honestly, I'm not trying to prove a point here. It just happens.
I've also managed to get less than a month away from the wedding and have made less than half of my dress. I'm hoping it will all magically come together at the last minute (and, in fairness, things often somehow work out that way for me - well, they always did at school, anyway), but the reality is that I am going to have quite a few late nights or long days sat at a sewing machine, and by the time the big day rolls around, I will probably be sick of the thing.
Still, I am getting there, and the obstacles that were holding me up (not having the shoes/supporting undergarments I needed in order to know my exact measurements for the day) are now sorted. I shall, I can exclusively reveal, be wearing ankle boots on my wedding day, on account of the fact I cannot walk in heels.
Also, I didn't have a seizure yesterday! I can now safely cross my fingers and hope that the wedding will be another one of those lovely seizure-free days. W is worried that the stress of the day will be too much for me, and that I'll have a seizure at the reception. While I'm of the opinion that, well, it beats having one in the registry office, I will admit that I'm just a little nervous about it all. I can handle the fact I'm getting married. I can handle standing in front of people and having to say stuff. Heck I can even (just about) handle being the centre of attention for a day. I really don't want to handle a seizure on top of it all. I'm only going to have one wedding day. I don't want epilepsy screwing it up. Please?
Oh yeah, I started by talking about my poor memory. Oops, I kind of segued that post a little, didn't I. See what I mean?
There. It is said. Okay, I've probably said it a few times before, but I think it's time I said it again. I have an absolutely, completely and utterly, awful short term memory. I will often think of something I need to do, walk up the stairs, and have forgotten it by the time I reach the top. I have windows 7 on my computer, and so my desktop background is plastered with notes and reminders for me, and I still don't remember to do many of the things. Ooh, hold on, I've just remembered I need to phone up for my prescription. Hold on.
Right. Done that. Also got sidetracked and forgot I was writing this blog for about twenty minutes. Honestly, I'm not trying to prove a point here. It just happens.
I've also managed to get less than a month away from the wedding and have made less than half of my dress. I'm hoping it will all magically come together at the last minute (and, in fairness, things often somehow work out that way for me - well, they always did at school, anyway), but the reality is that I am going to have quite a few late nights or long days sat at a sewing machine, and by the time the big day rolls around, I will probably be sick of the thing.
Still, I am getting there, and the obstacles that were holding me up (not having the shoes/supporting undergarments I needed in order to know my exact measurements for the day) are now sorted. I shall, I can exclusively reveal, be wearing ankle boots on my wedding day, on account of the fact I cannot walk in heels.
Also, I didn't have a seizure yesterday! I can now safely cross my fingers and hope that the wedding will be another one of those lovely seizure-free days. W is worried that the stress of the day will be too much for me, and that I'll have a seizure at the reception. While I'm of the opinion that, well, it beats having one in the registry office, I will admit that I'm just a little nervous about it all. I can handle the fact I'm getting married. I can handle standing in front of people and having to say stuff. Heck I can even (just about) handle being the centre of attention for a day. I really don't want to handle a seizure on top of it all. I'm only going to have one wedding day. I don't want epilepsy screwing it up. Please?
Oh yeah, I started by talking about my poor memory. Oops, I kind of segued that post a little, didn't I. See what I mean?
Monday, 5 September 2011
Some things change, and others just stay the same...
This morning, O went to Pre-School. It's not quite as a big a deal as it could be - last term he was going there one morning a week, but this term he will be going four days a week, two of them whole days, so it does represent the start of his life moving ever so slightly out of my control, which is a little scary. (As I type this, M has approached me and hijacked my lap, so I'm not completely bereft yet. And stop whacking the keyboard, you pesky little thing!)
It's been strange this morning, only having the one child to look after again, and knowing that this will be increasingly how things are over the coming weeks. Next year, he will be at school, and the year after that, even M will be gone in increasing amounts. Well, that's a long way off, but I tend to react this way whenever anything changes - I start envisioning further changes and how those changes may cause more changes, and how that will, ultimately, turn my eternal quest for routine on its head again.
Perhaps unsurprisingly, I had a seizure this morning. Well, I had a seizure yesterday, and two on Saturday, so this isn't particularly news, although it's unusual for me to have seizures in the morning. I guess it's probably all that contemplating about change. I have this paradoxical love and hatred of things being different. On the one hand, doing the same damn thing every day and never being spontaneous drives me mad. I hate it. It's dull. On the other hand, too much change, and I can't keep up. I start to forget things more - especially my medication, which then means I have more seizures, which then means that things change again as I have to adapt to the limitations that imposes. For example, this summer I have had more seizures (a lot more) which has meant I haven't been able to take O and M out. This has obviously had the knock on effect of having to entertain them more within the confines of our house, take O along on the occasions where we do go out to stretch his legs and offer some variety, and lean rather more heavily on W's parents and their larger garden to offer him somewhere to run around.
It has made me feel a lot more under pressure, which hasn't helped. I must admit, to a certain extent I have been counting down the days to this just waiting and hoping that it will offer a reprieve for my health. It quite possibly won't - after all, I still have M at home with me, and I still have a wedding in...less than five weeks. Yikes, I should probably get to work on that skirt, shouldn't I. (Actually, I'm remarkably laid back about that, all things considered. I worry W, because I have an unfinished top and no skirt at all, and my opinion on the matter is, "Eh, just chill, I can get it done!")
Anyway. O is back from his first morning of the term now, and says he had a lovely time, just playing with toys and "the other kids". Hmm. He also says he didn't go to the toilet, he "just pretended to wash his hands" and he didn't have a snack or a drink. I think perhaps he is not the most reliable person to ask. Tomorrow my mission will be to find out what he actually gets up to during the day, at least vaguely. While I wouldn't be surprised to find he has told me a whole heap of codswallop about his morning (he is, after all, three years old), it also wouldn't be impossible for him to have slipped through the net on a chaotic first day. He does have a tendency to get so wrapped up in play that he doesn't want to do anything else, and I know that the pre-school have a more free-form attitude to snack time than we do here at home. They have to go and get the snack themselves, and I wouldn't put it past O to have just not bothered, while they might have expected him, as a child who has been before, to know what to do and be more focused on the children who are brand new.
Oh, look, I've found something else to worry about. I think my brain has it in for me. Why can't I take my own advice and just chill?
It's been strange this morning, only having the one child to look after again, and knowing that this will be increasingly how things are over the coming weeks. Next year, he will be at school, and the year after that, even M will be gone in increasing amounts. Well, that's a long way off, but I tend to react this way whenever anything changes - I start envisioning further changes and how those changes may cause more changes, and how that will, ultimately, turn my eternal quest for routine on its head again.
Perhaps unsurprisingly, I had a seizure this morning. Well, I had a seizure yesterday, and two on Saturday, so this isn't particularly news, although it's unusual for me to have seizures in the morning. I guess it's probably all that contemplating about change. I have this paradoxical love and hatred of things being different. On the one hand, doing the same damn thing every day and never being spontaneous drives me mad. I hate it. It's dull. On the other hand, too much change, and I can't keep up. I start to forget things more - especially my medication, which then means I have more seizures, which then means that things change again as I have to adapt to the limitations that imposes. For example, this summer I have had more seizures (a lot more) which has meant I haven't been able to take O and M out. This has obviously had the knock on effect of having to entertain them more within the confines of our house, take O along on the occasions where we do go out to stretch his legs and offer some variety, and lean rather more heavily on W's parents and their larger garden to offer him somewhere to run around.
It has made me feel a lot more under pressure, which hasn't helped. I must admit, to a certain extent I have been counting down the days to this just waiting and hoping that it will offer a reprieve for my health. It quite possibly won't - after all, I still have M at home with me, and I still have a wedding in...less than five weeks. Yikes, I should probably get to work on that skirt, shouldn't I. (Actually, I'm remarkably laid back about that, all things considered. I worry W, because I have an unfinished top and no skirt at all, and my opinion on the matter is, "Eh, just chill, I can get it done!")
Anyway. O is back from his first morning of the term now, and says he had a lovely time, just playing with toys and "the other kids". Hmm. He also says he didn't go to the toilet, he "just pretended to wash his hands" and he didn't have a snack or a drink. I think perhaps he is not the most reliable person to ask. Tomorrow my mission will be to find out what he actually gets up to during the day, at least vaguely. While I wouldn't be surprised to find he has told me a whole heap of codswallop about his morning (he is, after all, three years old), it also wouldn't be impossible for him to have slipped through the net on a chaotic first day. He does have a tendency to get so wrapped up in play that he doesn't want to do anything else, and I know that the pre-school have a more free-form attitude to snack time than we do here at home. They have to go and get the snack themselves, and I wouldn't put it past O to have just not bothered, while they might have expected him, as a child who has been before, to know what to do and be more focused on the children who are brand new.
Oh, look, I've found something else to worry about. I think my brain has it in for me. Why can't I take my own advice and just chill?
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