Hi all,
I'm new to this forum, but not new to epilepsy.
I was born with a mild form of cerebral palsy (perhaps most easily explained as a movement disorder caused by scar tissue around the brain's ventricles). From birth, I also had the occasional generalized tonic-clonic seizure. As far as I can remember, everyone seemed to simply assume it was another to-be-expected side effect of the brain damage caused by a lack of oxygen during birth.
The seizures stopped, more or less, around age ten. We seemed to have found the right combination of drugs and lifestyle choices, although I don't remember now what the names of those drugs, or the specifics of my schedule, were.
I stopped taking the meds, after a few changeovers, at age twenty-three. At that point, I had been completely seizure-free for over five years, which I've heard is sometimes, all by itself, considered reason enough to stop. Roughly eight weeks into that meds-free period, though, I began having absent seizures.
For reasons that I'm not going to explain here (some other time, maybe), I didn't start taking medication again until about three months after that. At which point I found out that the old combo no longer worked the way it had before.
We fiddled with the meds for a while, but so far we have failed to make the absent seizures go away completely, and as of about a year ago, I am now once again having the occasional generalized tonic-clonic seizure.
Which brings me to the reason I joined this forum.
I am now almost twenty-seven. In the past four years, the little absences, which come about once a day on the good days, have almost become a 'normal' part of life for me. I can't drive a car because of them, which is sort of annoying, but other than that, I'm OK. The obligatory bad days notwithstanding, I am usually not staring off into the void nearly often enough for most of my coworkers to have figured it out yet.
Which was true until today. Today, people definitely noticed.
Both the absences and the 'big seizures', as I privately call them, have been growing steadily more frequent over the past few months, to the point where I'm now likely to have 'a big one' three weeks out of every four, along with multiple (up to a dozen) absences a day.
And today, I went out to eat with some colleagues, and halted in mid-conversation twice while having lunch.
Which led to one of my colleagues stopping me at the elevator as I was leaving, to make sure I would be able to get home safely on my own.
My immediate answer was yeah, sure, I've been doing this for years now, I'll be fine.
But she wouldn't let it go.
She stopped me again outside the building, while I was on my way to the bus stop, asking again if I was absolutely sure I would be fine.
Well, I ended up with her taking the bus with me, and literally dropping me off at my front door. Traffic was positively insane and it took us a long time to get where we were going, and I felt pretty uncomfortable about the whole thing the whole way home.
Does anyone have any useful pointers on how to explain to people that, well, this is my life, and I can't have them drop everything they are doing just because I may be having a bad day?
Also, I've been having what I think of as a new symptom, which may or may not be related to my epilepsy, where I get this transitory blindness in my left eye from time to time. At first I thought it might be a seizure predictor, and sometimes it is, but sometimes it's not. It can last anywhere from two minutes to an hour, but generally seems to last longer when it happens shortly after a seizure, which strikes me as odd.
I've talked about this with my GP, but it can't be provoked and is therefore hard to observe and/or measure, so she doesn't seem to know what it might be about.
Anyone recognize this?
I'm new to this forum, but not new to epilepsy.
I was born with a mild form of cerebral palsy (perhaps most easily explained as a movement disorder caused by scar tissue around the brain's ventricles). From birth, I also had the occasional generalized tonic-clonic seizure. As far as I can remember, everyone seemed to simply assume it was another to-be-expected side effect of the brain damage caused by a lack of oxygen during birth.
The seizures stopped, more or less, around age ten. We seemed to have found the right combination of drugs and lifestyle choices, although I don't remember now what the names of those drugs, or the specifics of my schedule, were.
I stopped taking the meds, after a few changeovers, at age twenty-three. At that point, I had been completely seizure-free for over five years, which I've heard is sometimes, all by itself, considered reason enough to stop. Roughly eight weeks into that meds-free period, though, I began having absent seizures.
For reasons that I'm not going to explain here (some other time, maybe), I didn't start taking medication again until about three months after that. At which point I found out that the old combo no longer worked the way it had before.
We fiddled with the meds for a while, but so far we have failed to make the absent seizures go away completely, and as of about a year ago, I am now once again having the occasional generalized tonic-clonic seizure.
Which brings me to the reason I joined this forum.
I am now almost twenty-seven. In the past four years, the little absences, which come about once a day on the good days, have almost become a 'normal' part of life for me. I can't drive a car because of them, which is sort of annoying, but other than that, I'm OK. The obligatory bad days notwithstanding, I am usually not staring off into the void nearly often enough for most of my coworkers to have figured it out yet.
Which was true until today. Today, people definitely noticed.
Both the absences and the 'big seizures', as I privately call them, have been growing steadily more frequent over the past few months, to the point where I'm now likely to have 'a big one' three weeks out of every four, along with multiple (up to a dozen) absences a day.
And today, I went out to eat with some colleagues, and halted in mid-conversation twice while having lunch.
Which led to one of my colleagues stopping me at the elevator as I was leaving, to make sure I would be able to get home safely on my own.
My immediate answer was yeah, sure, I've been doing this for years now, I'll be fine.
But she wouldn't let it go.
She stopped me again outside the building, while I was on my way to the bus stop, asking again if I was absolutely sure I would be fine.
Well, I ended up with her taking the bus with me, and literally dropping me off at my front door. Traffic was positively insane and it took us a long time to get where we were going, and I felt pretty uncomfortable about the whole thing the whole way home.
Does anyone have any useful pointers on how to explain to people that, well, this is my life, and I can't have them drop everything they are doing just because I may be having a bad day?
Also, I've been having what I think of as a new symptom, which may or may not be related to my epilepsy, where I get this transitory blindness in my left eye from time to time. At first I thought it might be a seizure predictor, and sometimes it is, but sometimes it's not. It can last anywhere from two minutes to an hour, but generally seems to last longer when it happens shortly after a seizure, which strikes me as odd.
I've talked about this with my GP, but it can't be provoked and is therefore hard to observe and/or measure, so she doesn't seem to know what it might be about.
Anyone recognize this?
