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GodivaGirl

Ever go from not knowing you're having seizures to being aware you are?

Hi!

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

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!

Re: Ever go from not knowing you're having seizures to being awa

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

Yeah, during a siezure like that one's attention is sortof emergency mode- I never thought of it like that. You know what to do- you can communicate enough to get certain things across, remember some conversations, but things are still fuzzy later. I always think I remember things perfectly but my version is always very different than everyone elses!

Re: Ever go from not knowing you're having seizures to being awa

My seizures changed from Grandmal up until I was 20 when I then had no seizures until I was 25 and they were partials. These have increased in intensity nd now I get super sick afterwards. I always just get up from my desk walk away and come back half an hour later as I know I cant communicate properly. The I go home, and some times I feel so strange I have to lay on the floor. Its like I get this feeling and I know that will be the safest place it can't even be the bed. Sometimes people say I look strange or absent. Its not suprising though! My neuro said its common for them to change, so watch this space who knows what may happen next!

Re: Ever go from not knowing you're having seizures to being awa

I have always known I was having a seizure up until this week.  I've had several seizures recently that I've not know about.  I wake up sore with my husband hovering over me. 

My guess, uneducated as it is, is that our seizures can change with med changes, life changes and time.

 

Hugs! 

Re: Ever go from not knowing you're having seizures to

Yes E does change with age!  My epileptologist told me this when I had my first seizure in 15 years in August of 07!  It was a Gran mal seizure but totally different from the ones that I had had before!  I have a lot of absent seizures, but then again I've always had a problem with those little buggars.     

Re: Ever go from not knowing you're having seizures to

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. :(

Re: Ever go from not knowing you're having seizures ?

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 ?

I'm wondering if having one or both of my ovaries removed may be a good
idea?  It would get rid of the hormones that are causing my
problems.  Truth is I never wanted to be a woman in the first
place and I wish they could simply remove the estrogen, get rid of my
breasts and reassign my gender but not have a male sex organ since I do
not intend to use it.  Since I do not  do that I'm
celibate.  I just wish there was a way to tell society I choose
not to without becoming abusive.  If you do not do it and don't
want to then what's the problem with it?  Men did have a problem
and were always bothering me when I had hair now I don't and I don't
have any problems like that.  Why is my grandma on me to grow my
hair back?  I feel healthy for the firt time in a really long time
so I don't want it back. 

Re: Ever go from not knowing you're having seizures to being awa

Yes. Four years ago I switched away from Dilantin to Keppra and that fundamentally changed my seizure types. I had all the usual temperament issues with Keppra and eventually wound up hospitalized. While discontinuing Keppra and returning to Dilantin brought me closer to where I was before, my seizures types have not changed (it's been 2+ years). I once experienced primarily petite and grand mals during which I had no consciousness and a regular post ictal phase, I now experience psychomotor seizures during which I am fully conscious and have no post ictal period. There are still a few "traditional" petite mals whereI lose consciousness and have a short post ictal period, but those always lead directly into a psychomotor seizure now.

For me personally, I suspect the Keppra unlocked some dormant potential in me and the psychomotor seizures are now closer to PNES seizures. I do still have regular "electrical" seizures however if I miss a dose of Dilantin or miss sleep.

Hope this helps.

Re: Ever go from not knowing you're having seizures to being awa

Thanks all for your input.  I'm not sure if it's age, if it's stress levels or what, but I do know one thing - something is going on and it's REALLY strange for some reason.  I also seem to be in a phase where I'm having more seizures.  Thing is, I know I can't be pregnant at all (way too much protection in place).  Interesting to read that seizure types changed switching to Keppra.  I've been on that 2 years now, and it's about the last 6 mths I'm noticing this (went through a few months were I didn't always take it - no medical insurance - don't recommend that!).   So, I guess when I see my neuro in June, I'll see what's up.

For now, I'll just hope live mellows a bit & I stop having seizures.  Wow, is the inside of my mouth totally mangled!

Thanks again for all the input, I'm thinking it has to be either age (i'll be 34 in June), stress, hormonal, or Keppra.  Hopefully my neuro does something.  Until then, eatting lots of yogurt with Omega 3 is helping seizures & I get to live off that, pasta & ice cream - anything else hurts to eat. Fun! Fun! 

 ~Erin/GG