Well, I had two seizures today. The first was one of the worst I've had in ages, complete with thrashing, breathing problems and general loopiness in spades. I also managed to shake my head a little silly and scratch my arm quite a bit when, for reasons unknown, I started repeatedly removing an absent t-shirt in a slight frenzy. I scraped at my bare shoulder about four or five times I think.
The second seizure was comparatively mild, though I banged my head on the sofa. I had another strange behaviour moment immediately beforehand though, because I wrapped myself in O's blanket and lay down on the floor like a fluffy sausage roll. I'm sure it made sense at the time. Oh, wait, no. Even then a small part of me was thinking "What the hell?" At least the second one was short.
Still, it would appear that I've been having a mild cluster - I've had quite a few in the last couple of weeks. Frustratingly, the Epilepsy Nurse's secretary has been on holiday this week, so my polite phone call asking whether I had fallen off the list has thus far gone unanswered. And, of course, it's a bank holiday on Monday, so I have to wait until Tuesday to try again. Hopefully when I do get through I won't have too long a wait. I haven't seen her since before Christmas, and there is, understandably, a lot I need to talk to her about. And yes, I am aware I should probably have made one or two enquiries as to what the heck's going on before now. The trouble lies with my abysmal short-term memory. It has taken me this long to remember to call at a point in the day when someone was likely to answer the phone. Usually I remember when I'm out and about or it's late at night, and then I forget again before I manage to call. Hopeless, that's me.
Saturday, 28 May 2011
Saturday, 21 May 2011
Not the End of the World.
There are times when I forget I even have epilepsy. Some mornings I wake up, feed M, raise eyebrows at O's hijinks, and before I know it, 10am rolls around and I forget to take my tablets, because I've forgotten I need to.
Of course, usually, the next time I enter the kitchen I remember again, and take them only an hour or so late. Sometimes I forget them altogether, which is not so good. Anyway. That's a sidetrack. The point is, I go about life, for the most part, as though I am... well, "normal" I guess, inasmuch as the word has ever meant anything to me. (I was always the odd one at school, so being abnormal isn't really new for me. I'm just abnormal in a different way now.) When I have a good week, it's actually quite easy for me to forget all about the seizures. If I think about it at all it's to feel somewhat guilty, as though I'm a fraud.
Then there are days like today, when I suddenly remember that, yes. I do have epilepsy, and no, I'm not a fraud. Usually it isn't even the big seizures that hit it home - the circumstances which inevitably surround them wind up becoming so surreal at times I handwave it as a kind of waking dream sequence. No, it's the small seizures which drive home the message. Today I had two of them. One of them was more like a bad aura, with mental grogginess and slight confusion, and was probably dissociative. It fitted that pattern, anyway. The second was epilepsy. I mean, I can never be sure, given that I wasn't wired up, but I felt... beyond weird. It was the same feeling I used to get before I started taking my AEDs (Anti-Epileptic Drugs).
First of all, I folded up. Then my eyes were rolling, and I couldn't get my lungs to operate on a regular basis. One moment I felt as though I couldn't lift my ribs up and out, the next I was taking a great big breath, and then a series of smaller ones - totally all over the place. A real mess. Finally, I had tiny little pulses of muscle activity in my hands and calves. Not enough to be thrashing about, but like someone was prodding me all over my legs, and that bed of muscles at the base of my thumbs was twitching. Normally, if I have a dissociative seizure, I might thrash or feel unable to move, but it's definitely my brain, somewhere, far off, laying down instructions. There's a little part of me saying "Come on, snap out of it and get up. The room will stop spinning eventually..." This, on the other hand, felt like it must feel in medical experiments where they touch parts of you with those little electrodes to stimulate random muscle groups. You've seen them on documentaries about the body, I expect.
It wasn't scary. At no point did I think "this is the end" or worry that I would hurt myself. But, in a small, specific way, the actions of my body were completely out of my control, and as daft as this sounds, that doesn't happen very often. I usually manage to convince my self that I could override the seizure if I was stronger, even though that's patently ridiculous. Most of the time, I have some idea of what's coming next - I can feel my body working its way up to convulsions, or slowing gradually to the point where my breathing is so shallow that not everyone notices it. This was sudden; shockingly so. I felt at the time that this was a significant seizure, and I think I know why, having thought about it a little more.
The other day I had been wondering just how effective my medication is, and how much it was really helping. The last time anyone adjusted the dosage I take was more than three years ago. The last time I saw my epilepsy nurse was six months ago (I'm in the process of finding out why I haven't heard anything from her in so long. I expect I've fallen off the system again). She'd floated the idea then of reducing my dosage and seeing how I got on, as that would be the only way of knowing what the current baseline state of my seizures is. I mean, some people stop having seizures after a while. Maybe I'd be a lucky one who has grown out of the epilepsy, but I'd never know all the time I put the lack of seizures down to the medication. The seizure today was a pretty effective reminder that no, I'm not going to grow out of this any time soon.
I haven't been helped by well-meaning relatives, all certain I'll be just fine in a few years, and it will go away. One older relative keeps quoting a random comment by a doctor when I was in hospital visiting someone, that I would grow out of it and be fine by the time I was twenty three. Well, I'm twenty four now. And let me see... Nope. Still have epilepsy. I guess on the spot diagnosis with no medical history is harder than that. And a bit unprofessional. But is has all contributed to give me a vague sense that, hey, it's okay, give it a few years and it'll all turn out dandy. Somehow.
No. It hasn't. And, no, it won't. I'm not going to wake up one morning and magically be "normal". Most of the time, this either doesn't occur to me, or is so blatant that I just accept it and move on. Every now and then, the message sinks a little deeper, prompted by seemingly unrelated things that are happening to people around me - like W talking about getting his driving license soon. Today, that all came together, and I felt a little barb of self pity, along with my seizure. I have epilepsy. Mostly I'm okay. But I will in all probability never drive again. The other day O turned to me and said that he didn't want me to have seizures any more. And today, for a few minutes, I felt like someone else had hijacked my body. I'm not hurting. Not really. But that barb does sting.
Of course, usually, the next time I enter the kitchen I remember again, and take them only an hour or so late. Sometimes I forget them altogether, which is not so good. Anyway. That's a sidetrack. The point is, I go about life, for the most part, as though I am... well, "normal" I guess, inasmuch as the word has ever meant anything to me. (I was always the odd one at school, so being abnormal isn't really new for me. I'm just abnormal in a different way now.) When I have a good week, it's actually quite easy for me to forget all about the seizures. If I think about it at all it's to feel somewhat guilty, as though I'm a fraud.
Then there are days like today, when I suddenly remember that, yes. I do have epilepsy, and no, I'm not a fraud. Usually it isn't even the big seizures that hit it home - the circumstances which inevitably surround them wind up becoming so surreal at times I handwave it as a kind of waking dream sequence. No, it's the small seizures which drive home the message. Today I had two of them. One of them was more like a bad aura, with mental grogginess and slight confusion, and was probably dissociative. It fitted that pattern, anyway. The second was epilepsy. I mean, I can never be sure, given that I wasn't wired up, but I felt... beyond weird. It was the same feeling I used to get before I started taking my AEDs (Anti-Epileptic Drugs).
First of all, I folded up. Then my eyes were rolling, and I couldn't get my lungs to operate on a regular basis. One moment I felt as though I couldn't lift my ribs up and out, the next I was taking a great big breath, and then a series of smaller ones - totally all over the place. A real mess. Finally, I had tiny little pulses of muscle activity in my hands and calves. Not enough to be thrashing about, but like someone was prodding me all over my legs, and that bed of muscles at the base of my thumbs was twitching. Normally, if I have a dissociative seizure, I might thrash or feel unable to move, but it's definitely my brain, somewhere, far off, laying down instructions. There's a little part of me saying "Come on, snap out of it and get up. The room will stop spinning eventually..." This, on the other hand, felt like it must feel in medical experiments where they touch parts of you with those little electrodes to stimulate random muscle groups. You've seen them on documentaries about the body, I expect.
It wasn't scary. At no point did I think "this is the end" or worry that I would hurt myself. But, in a small, specific way, the actions of my body were completely out of my control, and as daft as this sounds, that doesn't happen very often. I usually manage to convince my self that I could override the seizure if I was stronger, even though that's patently ridiculous. Most of the time, I have some idea of what's coming next - I can feel my body working its way up to convulsions, or slowing gradually to the point where my breathing is so shallow that not everyone notices it. This was sudden; shockingly so. I felt at the time that this was a significant seizure, and I think I know why, having thought about it a little more.
The other day I had been wondering just how effective my medication is, and how much it was really helping. The last time anyone adjusted the dosage I take was more than three years ago. The last time I saw my epilepsy nurse was six months ago (I'm in the process of finding out why I haven't heard anything from her in so long. I expect I've fallen off the system again). She'd floated the idea then of reducing my dosage and seeing how I got on, as that would be the only way of knowing what the current baseline state of my seizures is. I mean, some people stop having seizures after a while. Maybe I'd be a lucky one who has grown out of the epilepsy, but I'd never know all the time I put the lack of seizures down to the medication. The seizure today was a pretty effective reminder that no, I'm not going to grow out of this any time soon.
I haven't been helped by well-meaning relatives, all certain I'll be just fine in a few years, and it will go away. One older relative keeps quoting a random comment by a doctor when I was in hospital visiting someone, that I would grow out of it and be fine by the time I was twenty three. Well, I'm twenty four now. And let me see... Nope. Still have epilepsy. I guess on the spot diagnosis with no medical history is harder than that. And a bit unprofessional. But is has all contributed to give me a vague sense that, hey, it's okay, give it a few years and it'll all turn out dandy. Somehow.
No. It hasn't. And, no, it won't. I'm not going to wake up one morning and magically be "normal". Most of the time, this either doesn't occur to me, or is so blatant that I just accept it and move on. Every now and then, the message sinks a little deeper, prompted by seemingly unrelated things that are happening to people around me - like W talking about getting his driving license soon. Today, that all came together, and I felt a little barb of self pity, along with my seizure. I have epilepsy. Mostly I'm okay. But I will in all probability never drive again. The other day O turned to me and said that he didn't want me to have seizures any more. And today, for a few minutes, I felt like someone else had hijacked my body. I'm not hurting. Not really. But that barb does sting.
Monday, 16 May 2011
Epilepsy Week!
Yep, Epilepsy week is now underway - what, you hadn't heard? Yes, it is one of the slightly less well advertised awareness weeks. Still, here it is, and the underlying theme this year is information.
Well, although I haven't exactly done my bit and absolved myself, that is at least a small contribution to the cause.
You know, I did appear in the local paper once for Epilepsy week a few years ago. The theme that year was employment, and I was slightly downplaying the workplace ostracism I was on the receiving end of, seeing as it was colleagues and not the management, and I didn't want to lose my job.
As far as relevant epilepsy information goes, I think I've already covered a few of the basic points, so I wanted to use what remaining energy I have to go into specifics about treatment and diagnosis.
In order to get a diagnosis of epilepsy, you need an appointment with a Neurologist. Now, an epilepsy nurse (which I am lucky to have access to - not everyone does) once told me that here in the UK there is a drastic shortage of Neurologists; it's too broad a field, requiring too many differing specialisations. It's why you get really long waiting lists, and many of them work privately too. When you eventually reach your neurologist, s/he will probably refer you for an EEG - another long wait to get to one of the fewer locations where EEG tests can be carried out. For me, this meant a three month wait. Then you have to wait for the results to be analysed. Remember that epilepsy can only be directly identified if you have a seizure while strapped to the machine, so a lot of diagnosis has to be based on patient history as well. (I was "lucky" and has some spike and wave activity picked up on during my initial test.)
This means follow up appointments with the neurologist, and, where available, a forwarding to the Epilepsy nurse, who won't also be dealing with head pain, tumours, strokes, parkinsons - all the other things that Neurology covers as well as epilepsy. For this reason, the chances of having a Neurologist who has a real interest in epilepsy are smaller than you think. Mine have tended to specialise in pain and migraines. My last neurologist (currently off sick which means I haven't seen him in 18 months) didn't really seem to know that much about the subject at all.
Anyway. Diagnosis. After you get a diagnosis, the long, drawn-out process of treatment begins. If you're lucky, you'll get on with the first medication they put you on, and the dose will be tinkered until your seizures dramatically reduce in frequency or halt altogether. If your epilepsy relates to brain trauma (I had an MRI as well as an EEG because seizures can also be symptoms of tumours) then surgery might be an option.
However, not everyone has such a simple solution. I'm currently taking my second type of medication, as I reacted badly to my first, my seizures still occur as frequently as daily (last one this morning; I've been going through a cluster), and I consider myself not badly off. Some people go through seemingly all the types of medication, and the side effects from some of them are really not great. In fact, on the leaflet, most anti-epileptic-drugs will warn you that side effects can include convulsions. The fact that this is an improvement for some people should say quite enough about epilepsy as a whole that I can safely sign off for now.
And again, Happy Epilepsy Week! Happy Information!
Well, although I haven't exactly done my bit and absolved myself, that is at least a small contribution to the cause.
You know, I did appear in the local paper once for Epilepsy week a few years ago. The theme that year was employment, and I was slightly downplaying the workplace ostracism I was on the receiving end of, seeing as it was colleagues and not the management, and I didn't want to lose my job.
As far as relevant epilepsy information goes, I think I've already covered a few of the basic points, so I wanted to use what remaining energy I have to go into specifics about treatment and diagnosis.
In order to get a diagnosis of epilepsy, you need an appointment with a Neurologist. Now, an epilepsy nurse (which I am lucky to have access to - not everyone does) once told me that here in the UK there is a drastic shortage of Neurologists; it's too broad a field, requiring too many differing specialisations. It's why you get really long waiting lists, and many of them work privately too. When you eventually reach your neurologist, s/he will probably refer you for an EEG - another long wait to get to one of the fewer locations where EEG tests can be carried out. For me, this meant a three month wait. Then you have to wait for the results to be analysed. Remember that epilepsy can only be directly identified if you have a seizure while strapped to the machine, so a lot of diagnosis has to be based on patient history as well. (I was "lucky" and has some spike and wave activity picked up on during my initial test.)
This means follow up appointments with the neurologist, and, where available, a forwarding to the Epilepsy nurse, who won't also be dealing with head pain, tumours, strokes, parkinsons - all the other things that Neurology covers as well as epilepsy. For this reason, the chances of having a Neurologist who has a real interest in epilepsy are smaller than you think. Mine have tended to specialise in pain and migraines. My last neurologist (currently off sick which means I haven't seen him in 18 months) didn't really seem to know that much about the subject at all.
Anyway. Diagnosis. After you get a diagnosis, the long, drawn-out process of treatment begins. If you're lucky, you'll get on with the first medication they put you on, and the dose will be tinkered until your seizures dramatically reduce in frequency or halt altogether. If your epilepsy relates to brain trauma (I had an MRI as well as an EEG because seizures can also be symptoms of tumours) then surgery might be an option.
However, not everyone has such a simple solution. I'm currently taking my second type of medication, as I reacted badly to my first, my seizures still occur as frequently as daily (last one this morning; I've been going through a cluster), and I consider myself not badly off. Some people go through seemingly all the types of medication, and the side effects from some of them are really not great. In fact, on the leaflet, most anti-epileptic-drugs will warn you that side effects can include convulsions. The fact that this is an improvement for some people should say quite enough about epilepsy as a whole that I can safely sign off for now.
And again, Happy Epilepsy Week! Happy Information!
Thursday, 5 May 2011
Do I even need to say?
Yup. had a seizure again.
I mean, it's not exactly shocking, but it is rather annoying. Just another reminder of all that is wrong with my brain. At least I managed to get out and vote.
I'm not going to get all preachy now, because the polls have closed and I'm too late to make a difference (too disorganised and forgetful, if I'm honest), but I do hope that if AV doesn't win (which I guess it probably won't) that it was close. I care about democracy, and having my voice heard. Mostly because I feel that right now it isn't - that as far as the people in power are concerned, people like me don't really exist; we're just statistics. And it's easy to dismiss numbers on a page, and a lot harder to dismiss names and faces, which is why no one ever comes looking for the names and faces when the hard decisions are being made.
Curses, that's starting to get preachy. I'm going to call it a night before I start lecturing my opinions to the world wide void when it doesn't really matter and I'm too late to make a difference. It'll only disappoint me when I run out of air to wheeze.
And yes, I have been having a slightly rubbish few weeks. Haven't we all?
I mean, it's not exactly shocking, but it is rather annoying. Just another reminder of all that is wrong with my brain. At least I managed to get out and vote.
I'm not going to get all preachy now, because the polls have closed and I'm too late to make a difference (too disorganised and forgetful, if I'm honest), but I do hope that if AV doesn't win (which I guess it probably won't) that it was close. I care about democracy, and having my voice heard. Mostly because I feel that right now it isn't - that as far as the people in power are concerned, people like me don't really exist; we're just statistics. And it's easy to dismiss numbers on a page, and a lot harder to dismiss names and faces, which is why no one ever comes looking for the names and faces when the hard decisions are being made.
Curses, that's starting to get preachy. I'm going to call it a night before I start lecturing my opinions to the world wide void when it doesn't really matter and I'm too late to make a difference. It'll only disappoint me when I run out of air to wheeze.
And yes, I have been having a slightly rubbish few weeks. Haven't we all?
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