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Ever go from not knowing you're having seizures to being aware you are?
Sun, 03/30/2008 - 19:22Hi!
I'm looking to know if it's possible for seizure types to change from when you're originally diagnosed, and if the way seizures happen can change. Things seem to be getting better for me in some ways, but also really, really strange in others.
Originally, I was diagnosed at age 5 with peti-mal seizures. I took meds until age 12. Well, age 16, I experienced another seizure (a bit more severe, don't know the type), got put back on meds and have been on them ever since - various combinations. I'm now 33 and currently I'm on Topomax 100mg 2 x day, Keppra 500mg 2 x day, and Clobazam 10mg at night.
The strange thing -- until a couple months ago I'd have seizures that would be absence or really minor complex partial seizures once in awhile, and am aware of most of the triggers to manage things. When seizures happened, people around me would pick up on it, I'd be totally out of it, unaware, unresponsive and unable to talk to people in a way they'd understand for about 20 minutes after.
Most recently, I've had a couple seizures where I sorta know I'm having them. Last Saturday, during a seizure my boyfriend was talking to me, I was talking to him, I sorta remember the conversation and I remember saying I have a headache, but I'll be ok, baby, I just want to chill out....my jaw is going to be sore isn't it.
Then, this week at work (I work in a call center), I remember it feeling like the lights were going on and off for a bit. I took a few calls where I broke 'em off (ended them), then I remember talking to a lady who said, it's okay, just relax, I'm probably not interested but I'll talk to you. While going through main part of the seizure I mummbled the sales pitch sorta, and wrote my bf's cell # on a note pad. Then I hung up my phone, walked over to my account manager & said "call this # I can't, tell him spacey says hi"...the rest is sorta hazey, but it's wierd to remember going through the seizure.
Is it possible to have things change in a way where you remember going through seizures? Any one else ever have this happen? Doe this mean I have to increase my meds or change them?
Any input would be appreciated.
Thanks.
Erin / Godiva
Comments
Re: Ever go from not knowing you're having seizures to being awa
Submitted by GodivaGirl on Mon, 2008-03-31 - 19:26
Thanks! Glad to know I'm not alone in things changing. It seems so strange going the opposite way. I've spent most of my life going the opposte way than you ub - waking up with people dazed & confused and just kinda knowing a seizure happened by the look on people's faces.
It's kinda a wierd thing to get used to realizing that seizures are happening as they do and being more aware. From what people tell me, it's like I know something is wrong with me, I'm not entirely sure what, so I go into this mental state of emergency and sorta know how to react (call my boyfriend, relax, chill out). I don't entirely remember the seizures happening, but I'm responsive enough and I'll remember having conversations with people. It's really, really strange. Who knows, maybe it's the craziness of life. My neuro does always tell me to lead a consistent life, and work isn't letting me lately.
Thanks again - good to know I'm not the only one who's seizures change types and stuff. And, yeah in a way, I guess these wierd ones are kinda fun.
~Erin/GG
Thanks! Glad to know I'm not alone in things changing. It seems so strange going the opposite way. I've spent most of my life going the opposte way than you ub - waking up with people dazed & confused and just kinda knowing a seizure happened by the look on people's faces.
It's kinda a wierd thing to get used to realizing that seizures are happening as they do and being more aware. From what people tell me, it's like I know something is wrong with me, I'm not entirely sure what, so I go into this mental state of emergency and sorta know how to react (call my boyfriend, relax, chill out). I don't entirely remember the seizures happening, but I'm responsive enough and I'll remember having conversations with people. It's really, really strange. Who knows, maybe it's the craziness of life. My neuro does always tell me to lead a consistent life, and work isn't letting me lately.
Thanks again - good to know I'm not the only one who's seizures change types and stuff. And, yeah in a way, I guess these wierd ones are kinda fun.
~Erin/GG
Re: Ever go from not knowing you're having seizures to being awa
Submitted by uberzwitter on Sun, 2008-03-30 - 23:54
I have complex partials. Back when my primary seizures were longer I used to be able to have conversations with people, and continue doing all manner of things, with varying degrees of success! Sometimes I can talk and think normally but my motor movements impede much from coming though, sometimes I am so disoriented that I talk nonsense, and sometimes my vocal cords just wont work- I can hear everything going on but cant respond. My experience of things also depend on which seizure I'm having. With major convulsions, or the secondary seizures, nothing really seems out of place except for the inability to focus that preceeds- my body just wont stop moving. With the primary ones I sometimes feel as if my mind is disconnected from my body, or as if time has stopped in some odd way. I also get deja vu and the opposite of it alot, where you feel as if you have never been somewhere familiar to you. So yeah, its common. I have found that it freaks out paramedics. They get weirded out when I suddenly talk to them during convulsions. A couple have accused me of not being epileptic even because they have never seen it, or at best have picked up only one other person ever- which makes me wonder if its that uncommon. I dont think they have to change meds. Siezures just seem to change. My siezures have gotten to be shorter in duration in the four years I've had them, less weird cognitively, but more violent in movement and always closer to blacking out. I miss the weird ones. At least they were more fun!