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Old 07-06-2002, 05:15 PM   #16
Junior Member
Join Date: Jun 2002
Location: Preston MN
Posts: 31
mnsnellers HB User

These are all very interesting posts, because I have never had any warning signs either with the seizures before my surgery 16 yrs ago or these latest rounds. I don't remember anything that happens during them either. My girlfriend describes to me what I do after them and that is the only info I have on them. As an example we were driving one day with my daughters in the back. My girlfriend said I just started staring, then I started talking funny, then I turned and looked at my daughters and asked them who they were. Another episode, I was having a cigarette and I stuck the lit end in my mouth to put it out (that is what I told her I was doing anyway). My daughters asked her what I was doing and she said I was having a seizure. That is the thing that bothers me the most, is that my daughters have to see them, because I don't get to see them very often anyways and when I do, they have to see dad in a seizure. I have had a few deja-vu feelings I will admit, which I read somewhere could be seizures, but I have no idea if they are or not.

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Old 07-07-2002, 08:11 AM   #17
Senior Member
Join Date: Feb 2002
Location: Barlow,North Yorkshire,England
Posts: 227
couldbeworsaspose HB User

hello agian everyone,
I have had tle,all my life.When I was young I didn't know any better,and thought It was normal to go dizzy and have blurred vision,and the stomach trouble.I was used to seeing epilepsy though,because my sis,has grand-mals.I didn't connect this with what I have.I've mentioned In other post's that the neuro wondered If I was forceps delivered,because In England at that time It was common to use them,so he must have considered,the notion that the forceps may have damaged my brain.Anyway the cat scan showed nothing,maybe epilepsy just runs In my family.As for meds I was on tegretol,at first but I asked for something else,as they made me feel ill,and my hair started to thin out.I am now on lamictal,the only trouble I am having Is with my teeth,I don't know whether It's the lamictal or not but I didn't have any problems before I took them.I know you are worried about her future,but look at It this way,there are a lot of us here on this board,we are of various age groups,some are a lot worse off than me,but we are still here fighting on.I have worked and raised a family and that's without medication!,so If I can do it anyone can. (I don't know how my family put up with me lol),I am no doctor but I have heard of siezures getting worse,and I have heard of siezures declining.My siezures haven't changed much over the years except I started getting aggressive at work and forgetting thing's,also I was having more siezures,this Is when I went to seek help.Everyones different so even though those of us with tle,may have simmilarities,we probably have a lot of differences too.I never know when they are coming,It just happen's that quick for me,a word a sound a taste,maybe a piece of music,light,and dej-vu.My mood changes very quick,maybe that Is a sign,I don't know.I didn't even know what i was having were siezures,because I thought epilepsy was just falling down and shaking.My wife said to me one day "you have epilepsy"(she used to be a nurse),I didn't believe her but It turns out she was right.Hope I've answered your questions,If not remind me.

[This message has been edited by moderator1 (edited 09-18-2002).]

Old 07-07-2002, 03:45 PM   #18
Senior Member
Join Date: Feb 2002
Location: Barlow,North Yorkshire,England
Posts: 227
couldbeworsaspose HB User

As to your question about body temp...I can't say as I have thought about It.As for abdominal pain,I get a pain in my right hand abdominal area,like an impending hernia,It's strange as my doc thinks It's irritable bowel,but I have just read a posting at the british epilepsy's from someone asking If anyone takes lamotrigine,and gets a pain in their right side,thats amazing,I'm going to ask her about this.

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[This message has been edited by moderator1 (edited 09-18-2002).]

Old 09-20-2002, 09:50 PM   #19
Join Date: Aug 2002
Location: auckland,new zealand
Posts: 6
taff75 HB User

i have been lucky in the fact that i always get a warning before having a seizure

it's kind of strange to describe, i get a funny taste in my mouth and my face seems to go numb

luckily this stopped me from having a serious crash whilst driving. i drove faster and faster thinking i could make it back to the depot but then i just pulled over and i woke up behind the vehicle being covered with a blanket by an old lady!!


Old 09-23-2002, 09:25 PM   #20
Join Date: May 2001
Location: Chicago,Il
Posts: 98
pacemaker HB User

When I had my Seizures ,they were Grand-Mals
with no warning at all I learned what aura's
are through this board. What are white
Karate-Pops? I never heard of them.:cnfused:
Peace to all

Old 09-24-2002, 10:01 AM   #21
Join Date: Sep 2002
Location: Texas
Posts: 7
caffeinedream HB User

I have auras far too frequently, and they are like having someone elses memory implanted into my brain. This causes me to "go running after it", and even though it has been years since I have had a seasure, and I know what is going on going in, my mind still does it. It leaves me pretty useless for half an hour or so.

I'm a musician/singer and I once had an episode like this whil on stage, it scared my band members to death! They know I have epilepsy, and guard me from strobe lights but after this show the other guitarist decided to learn some words to songs. He said it was like I was in a car and just pulled to the side and stopped! agrivating! makes you fell helpless.


Old 09-24-2002, 07:32 PM   #22
Join Date: Jul 2002
Location: Corona, CA
Posts: 6
dstock11 HB User

My aura's or warnings are mostly de ja vu ... a certain thought comes into my mind. I cannot for the life of me remember what it is but then I know what's coming so I sit or lay down. I mostly have simple seizures but have had grand mals (gtc). Three months ago, I had no warning just a very very tired feeling the day before and morning of the gtc. Last week I had a metallic taste in my mouth but thought it was the medication or was hoping it was. So far I am seizure free for almost 3 months.

Old 09-25-2002, 02:09 PM   #23
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Join Date: Jun 2001
Location: Kansas City, MO, USA
Posts: 34
Phantom_309 HB User

I always have an aura before I have a seizure. I get a weird song in my head and a weird taste/smell. Both the song and smell seem very familiar at the time but I can't pinpoint it after the aura stops (if that makes any sense). I also get the deja-vu feeling along with it. Sometimes I have auras that don't turn into GM seizures. I have had five GM seizures so far and they have been anywhere from 4-11 months apart (with the exception of the last two I had which were two hours apart and both during sleep). The last three seizures I have had have been in my sleep. I always have my auras around the time I wake. When I first started having the auras, I didn't know what it was. Sometimes I would just have a few auras early in the morning and then it went away. I think I had auras a few times before I ever experienced my first GM seizure. I also once had auras all day until I had a seizure in the afternoon (second seizure I ever had...didn't know what an "aura" was). I sometime have momentary loss of memory and forget things I should know. I now know that if I wake and during my shower or whatever I start to get that feeling, I better just go lay back down and call into work :-) Out of all my seizures, I either get the auras right after I wake or have the seizures in my sleep aroung wake time. I have never just had auras pop up in the middle of the day, just after I've been sleeping. I have had auras in mid day, but when that happened, they were apparent when I woke. Weird. At least I have the warning and I pray I continue to have them.

So far, ALL of my seizures have had auras that preceed them with the exception of the ones I had in my sleep. Out of the two seizures I had in the same day that were 2 hours apart, an aura woke me in between them. So far I am 2 months seizure free again. I feel like I'm on a 6-11 month cycle and when the 6th month seizure free rolls around, I start to get scared. I get the feeling of "When will the next one come". Hopefully they can get my meds right.

I started having the seizures at 27 and I am now 29. I went 7-1/2 months on no meds between my first two seizures and almost 11 months seizure free on 400 mg Dilantin. They took me off of the Dilantin because it was raising my liver enzymes and put me on 750mg Depakote. On Depakote, my frequency has increased (4 months between). They added 1g Phenobarbital at night to my meds (the nurse on the phone acted very reluctant and "put out" when she did this). I don't think the Depakote is working for me but the docs say "your blood levels look right". The doctor didn't even consider changing to a more effective med and I have yet to see my nuero. I now know that we are just "experimental" to most nueros and they just seem to randomly pick the next med to try. I am considering quiting taking meds all together because I just don't see the point in it if I'm going to have the seizures meds or no meds. It sucks!

Old 09-28-2002, 08:37 PM   #24
Join Date: Sep 2002
Location: Herndon, VA, USA
Posts: 4
LoveleiOne HB User

You guys must be following me around...metallic taste in the mouth, sometimes it's a buzzing in my ears or a voice saying my name, I've 'come to' and discovered my arm, always the left arm for me, sticking straight up in the air. The usual routine for me is that 'swimmy feeling' in my stomach and what seems like a mild headach coming on. I am very familiar with the clammy feeling, too.
Fortunately I am still able to drive and that in part is thanks to the fact that I do have warning auras. There have been a few occasions that I've pulled off the main road and waited until I felt better. Or I've called my husband on my mobile phone and asked him to talk to me because I could feel a partial sz coming on. It never ceases to amaze me how similar many of our experiences are with this condition.
I thought I'd fall over when I read someone's entry about finding his arm straight up in the air. I've fallen asleep in waiting rooms and awakened to find my arm at 'full mast'. Can't imagine what other people in the room must be thinking when they see that action<LOL>.
Thanks for your postings...I definitely relate.


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