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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 ?
Submitted by banffgirl on Wed, 2008-04-09 - 11:51
SEIZURES CHANGE ALOT WITH AGE. I THINK PROBABLY MORE WITH WOMEN THAN MEN SINCE OUR HORMONES DO PLAY HAVOC ON OUR BRAINS. I STARTED OUT WITH PETITE MALS AS A CHILD, ADDED SIMPLE PARTIALS AS A TEEN, ADDED GRAND MALS AS THEY WERE CALLED AT 25 WHEN I HAD CYSTS ON MY OVARIES, SO HORMONE PROBLEMS AGAIN. I GOT THOSE UNDER CONTROL. MY THE DOC TOLD ME BACK IN MY 20S, THAT SOME TIMES IN MY 40S MY SIEZURES WIL GET BETTER, GO AWAY OR GET WORSE. WELL AT 45, I STARTED WITH COMPLEX, ABSCENCE AND SIMPLE PARTIALS. THEN WITHIN YEAR TONIC CLONICS AND 30+ EPILEPTIC SPIKES IN A 20 MIN EEG. A COUPLE OF YEARS LATER I WAS AT CONSTANT EPILEPTIC SPIKES IN MY BRAIN AND JUST TONIC CLONIC AND ABSCENCE SIEZURES. NOW IN MARCH OF 08 I AM BACK TO COMPLEX, ABSCENCE, PARTIALS AND THE OCCASIONAL START OF A TONIC CLONIC THAT DOESNT MATERIALIZE SO IT SEEMS LIKE THEY ARENT GOING TO STICK AROUND ANY MORE, I HOPE. THE BRAIN IS REALLY AMAZING.
I WAS LIKE YOU, WORKING FOR A LARGE COMPANY DOING SALES BUT THE AMOUNT OF INFO I NEEDED TO KNOW GOT TO THE POINT I COULDNT REMEMBER ANYTHING. I WOULD ZONE OUT IN THE MIDDLE OF CALLS, I WOULD HAVE SIEZURES WHERE I WAS SLOWING MOVING INTO A DEEP VOID AND LOSS MY HEARING THOUGH I COULD SEE EVERYONE AROUND ME. THEN BAMM, THE SOUND WOULD RUSH BACK. MY EPI SPEC SAID IT WAS A COMPLEX THAT STARTED IN THE AUDITORY PART OF THE BRAIN. THOSE I HATED! HAD ONE WHILE WATCHING A SCI FI SHOW ONCE, FREAKY, LOL. I TO GET HEADACHES FROM MINE, MIGRAINES, YUCK! THOUGH THE THE TOPAMAX IS HELPING SINCE MY TOPAMAX LEVEL IS UP TO HIGHER.
DIFFERNT MEDS DO WORK ON DIFFERNT TYPES OF SIEZURES, THOUGH SOME DO WROK ON MULTIPLE TYPES. I WOULD TALK TO YOUR DOCTOR SO HE CAN REEXAMINE YOUR CASE. HE MIGHT EVEN WANT TO DO A NEW WORK UP WITH A EEG OR VEEG TO SEE WHATS GOING ON. THEN HE CAN DECIDE THE BEST COURSE OF ACTION FOR WHAT TYPE OF SIEZURES YOU ARE HAVING.
God Bless, Banffgirl
life is fragile, handle with prayer.
SEIZURES CHANGE ALOT WITH AGE. I THINK PROBABLY MORE WITH WOMEN THAN MEN SINCE OUR HORMONES DO PLAY HAVOC ON OUR BRAINS. I STARTED OUT WITH PETITE MALS AS A CHILD, ADDED SIMPLE PARTIALS AS A TEEN, ADDED GRAND MALS AS THEY WERE CALLED AT 25 WHEN I HAD CYSTS ON MY OVARIES, SO HORMONE PROBLEMS AGAIN. I GOT THOSE UNDER CONTROL. MY THE DOC TOLD ME BACK IN MY 20S, THAT SOME TIMES IN MY 40S MY SIEZURES WIL GET BETTER, GO AWAY OR GET WORSE. WELL AT 45, I STARTED WITH COMPLEX, ABSCENCE AND SIMPLE PARTIALS. THEN WITHIN YEAR TONIC CLONICS AND 30+ EPILEPTIC SPIKES IN A 20 MIN EEG. A COUPLE OF YEARS LATER I WAS AT CONSTANT EPILEPTIC SPIKES IN MY BRAIN AND JUST TONIC CLONIC AND ABSCENCE SIEZURES. NOW IN MARCH OF 08 I AM BACK TO COMPLEX, ABSCENCE, PARTIALS AND THE OCCASIONAL START OF A TONIC CLONIC THAT DOESNT MATERIALIZE SO IT SEEMS LIKE THEY ARENT GOING TO STICK AROUND ANY MORE, I HOPE. THE BRAIN IS REALLY AMAZING.
I WAS LIKE YOU, WORKING FOR A LARGE COMPANY DOING SALES BUT THE AMOUNT OF INFO I NEEDED TO KNOW GOT TO THE POINT I COULDNT REMEMBER ANYTHING. I WOULD ZONE OUT IN THE MIDDLE OF CALLS, I WOULD HAVE SIEZURES WHERE I WAS SLOWING MOVING INTO A DEEP VOID AND LOSS MY HEARING THOUGH I COULD SEE EVERYONE AROUND ME. THEN BAMM, THE SOUND WOULD RUSH BACK. MY EPI SPEC SAID IT WAS A COMPLEX THAT STARTED IN THE AUDITORY PART OF THE BRAIN. THOSE I HATED! HAD ONE WHILE WATCHING A SCI FI SHOW ONCE, FREAKY, LOL. I TO GET HEADACHES FROM MINE, MIGRAINES, YUCK! THOUGH THE THE TOPAMAX IS HELPING SINCE MY TOPAMAX LEVEL IS UP TO HIGHER.
DIFFERNT MEDS DO WORK ON DIFFERNT TYPES OF SIEZURES, THOUGH SOME DO WROK ON MULTIPLE TYPES. I WOULD TALK TO YOUR DOCTOR SO HE CAN REEXAMINE YOUR CASE. HE MIGHT EVEN WANT TO DO A NEW WORK UP WITH A EEG OR VEEG TO SEE WHATS GOING ON. THEN HE CAN DECIDE THE BEST COURSE OF ACTION FOR WHAT TYPE OF SIEZURES YOU ARE HAVING.
God Bless, Banffgirl
life is fragile, handle with prayer.
Re: Ever go from not knowing you're having seizures to
Submitted by Spacedoubt on Mon, 2008-04-07 - 20:02
E definitely can change with age and also with hormones. My 10-yr-old dd was sx free for 3 years and all of a sudden she is having sxs that are totally, completely different than when she was younger. Completely different. It's baffling. I think it has something to do with hormones.
Speaking of hormones, those can change things, too. I had a hysterectomy 2 years ago and that seemed to change my sx frequency. Sometimes when I have a hotflash thingy, I am not sure if it's a sx or a hot flash. I'm only 34!
Also, if you're having complex partials, which it sounds like you are, that means that parts of your brain are involved, and parts are OK. The OK parts are writing down your phone number and talking, and doing things that you can kind of do on autopilot, while the rest seizes.
I have had similar experiences. Often when I have a CP, I convince myself that I am 'about' to have one, not that it's really happening. Once, during a very long CP, the oven timer went off. Well, I didn't want the food to burn once the seizure came (I was still in denial). So I walked over there and took the food out without oven mitts! I couldn't feel the pain, though.
Then the part of my brain that was with it realized that it would be dark soon and my kids were playing outside. I think I could hear my gangster neighbors yelling, too. So, I walked outside and tried to tell my kids to come inside. I couldn't talk, though. I stood out there and watched them and tried to talk. Finally, the seizure wore off and I started to feel pain. I looked down at my hands and saw blisters forming in the pattern of oven racks. It really hurt!
I still remember what I did during the sx, but I was obviously pretty out of it.
Seizures are very weird. :(
E definitely can change with age and also with hormones. My 10-yr-old dd was sx free for 3 years and all of a sudden she is having sxs that are totally, completely different than when she was younger. Completely different. It's baffling. I think it has something to do with hormones.
Speaking of hormones, those can change things, too. I had a hysterectomy 2 years ago and that seemed to change my sx frequency. Sometimes when I have a hotflash thingy, I am not sure if it's a sx or a hot flash. I'm only 34!
Also, if you're having complex partials, which it sounds like you are, that means that parts of your brain are involved, and parts are OK. The OK parts are writing down your phone number and talking, and doing things that you can kind of do on autopilot, while the rest seizes.
I have had similar experiences. Often when I have a CP, I convince myself that I am 'about' to have one, not that it's really happening. Once, during a very long CP, the oven timer went off. Well, I didn't want the food to burn once the seizure came (I was still in denial). So I walked over there and took the food out without oven mitts! I couldn't feel the pain, though.
Then the part of my brain that was with it realized that it would be dark soon and my kids were playing outside. I think I could hear my gangster neighbors yelling, too. So, I walked outside and tried to tell my kids to come inside. I couldn't talk, though. I stood out there and watched them and tried to talk. Finally, the seizure wore off and I started to feel pain. I looked down at my hands and saw blisters forming in the pattern of oven racks. It really hurt!
I still remember what I did during the sx, but I was obviously pretty out of it.
Seizures are very weird. :(