I kept going in and out. One minute I could hear what was goin on and then I was back out again. When I started with the staring one, its like I fell "asleep", I knew I was going to have it (my left hand started to spasm), but that all was black and I couldnt hear, it wasnt until I started jerking that I could start hearing again and then I could hear the person talkin to me for a moment and I would even try and tell myself to move or say somthn and I couldnt and then I was back out again, and then again I heard some one say "She has seizures all the time, dont panic" And I heard a couple of times them yelling my name and the person grabbing ahold of me and holding me, i remember feeling so comfortable and safe then. And I then again just kept telling myself to try and move or talk, open my eyes or for it to stop and I couldnt. And it was like even the times I couldnt hear them I could still think to myself. Does that make sense? Alot of parts I dont remember and then theres parts I remember very vividly. I just had a tegretol level a couple weeks ago and its at a perfect level. I do know when I hear everyone, if they panic then I panic and there were alot of people in there and alot of people that were freaked and panicked. But those voices were very distant hearing to me. The person that was holding me talking to me, she was loud but it was slower for me, like her talking was very drawn out. Does any of this make sense at all? Its very hard for me to explain, but I want to explain it to some one that understands. I am defently going to ask about the keppra! Thank you so much! Its great to talk with people that understand this! Also, when I have seizures they dont stop, the only way I can get out of it is if well my mother is there and irritates me and talks to me and I dont know what all she does, but like yesterday the other people that were tryin to help me, they couldnt get me out of it, and these seizures last for about 10 min and longer and the longest has been 30 min and thats when the ambulance had to be called. The only way I seem to get out of it is when my mother is there and works with me, its like I only recignize sp? her voice and its only ever been her that ive been able to stop, but even her the longer I stay in one the worst it is for her to try and get me out of it. I dont just stop on my own and nobody else can help me get out of it. Have any of you had a problem with that? Now thats only when I go into the jerking ones after ive already been into staring type. But thats my problem, nobody relises im having that type until they go to talk to me and then usally by then its to late. Sorry I have so many quistiones, Im just still trying to learn what my body is doing and going threw.

Hi Tos8,

Many of us have the same problems. But that quoted post above hit me the most.

I allowed it to get to me so much that I became agoraphobic. I've hardly left the house for over 3 years now. Only on very specific times will I go out. And that has had flow on effects to every other area of my life.

I'm trying to get over it, but to be honest I'm not getting anywhere. I think that if I go out to the gp every few months (which petrifies me), then I should be left alone. I did manage with a huge amt of medication, move from one state to another over 2000 miles away. I don't remember much of the trip now because the only way I could travel was unconscious.

PLEASE don't et your life get like mine. I have the best carer anyone could ask for, but his life is very liited because of mine. I hate that.

This is something you don't need to start happening. Please talk to the people over at PsychCentral, they're a great bunch and very supportive. You can ask one of the pdocs for some assistance with it now, before it becomes the issue that stops your life from moving past the front deck like mine,

Good luck with it and please keep us posted ,

Rhiannon

I had been sz. free for 3 weeks! I was decreasing my tegretol to go off and went onto my depakote 1000mg a day and then this week i completly stopped the tegretol and just on depakote and tonight i had a big sz. and we think a couple small ones today because of repetitive talking, which that would obvisly be the complex partial sz. so emailed neuro tonight and going up to 1250mg of depakote and if that doesnt work then im goin back on the tegretol. I dont understand why he wont keep me on both, because for the last 3 weeks i have been on both and havent had a sz. at all. Looked into other neuro drs around here and they are even worse. So i just tryin to hold out for now.

I know its terrible! I dont go out much anyways, but i dont want to have to worry when i go out if i could have one. Church has been the biggest thing because ive had 2 there and one in my sunday school class and it scared them to death! And now when i go, you can tell they try not to look but they do. I dont like when everyone always ask me if im gonna have a sz. because may not feel the best that day or when im sitting down out to eat with my family and they always look over at me and ask of im ok. That all just really bothers
me!

I find that if my family ask if I'm ok then I am exhibiting symptoms which tell them I am not ok. So even though at times I react with exhasperation I do know that something they've seen in me is telling them I'm either having a complex partial or I'm going to have a cp or myo and very rarely a grand mal (tonic clonic). They are just concerned about you and want to make sure you are ok. We have the potential to hurt ourselves no matter what type of sz we have, so it's good to know we have angels on our shoulder so to speak...They love you, that's worth everything...

When i saw my dr a couple weeks ago i was also dignosed with myoclonic sp? Sz. along with the complex partial and if it gets to bad then it will turn into a tonic clonic, like yesterday, i guess because i had the 2 small ones that we were aware of by last night i was just pushed over the edge. I will have to start paying attention if they say somthing if my behavior is diffrent. But like tomorrow night i am supposed to go out and my family is hesitent of letting me go because there scared im going to have one while there not around and i even am worried because my friends are not going to know what they look or what to look for or even what i look like. So these type of situations i dont know how to handle and i may not just go.

Ok i had 3 seizures on thursday, 2 small complex partials and 1 big one and that took a toll on me, then friday night i had a big one when i was asleep and i woke up and i was so sick! I knew i had one because of the sympthomes that presented, i woke up so sick to my stomich and that horrible heavy feeling with my body heat pouring off of me yet i was so cold, i was in a great amount of pain and i felt so panicked because i had such a hard time calming my body down. It was terrible! I know for a fact i now need to be on 2 meds. The depakote stopped the myoclonic sz. but when he stopped my tegretol i went back to having the complex partials. These things are TERRIBLE! And i did go out last night after sleeping all day and then went to church this morning and i think i pushed my body to hard after all of this has
happend. I am sooooo tired, my body feels physically done. How do you all try to recover after your sz.?

Hi tos 8. I have had epilepsy since I was 3 and I am now 48. So i have kind of grown up having seizures and it has been the norm for me. I have both partial & clonic seizures. I can't imagine the pain of adjusting to this later in life. My sz are pretty well controlled. For now I am on tegretol and lamictal but I do still have both kinds maybe once a month. I know the pain and embarassment of having a seizure can be horrible. In high school I once wet my pants while changing classes. Thru all this what helps me get thru those times, is the fact now days people are more knowledgable about epilepsy. People will usually be supportive and make me feel comfortable if they feel comfortable around me. Once I told my new boss about me epilepsy, she just told me plain and clear, "just don't have them at work". Needless to say we had a very long talk about my condition and years later she became like a mom to me. There will always be times when you will have them in front of strangers. Be sure you are always wearing a medical alert symbol so they understand what is going on. Friends,Neighbors,co workers,and anyone you are going to be around that will be alone with you for long periods of time you need to let them know what may happen. When you are open about your condition and let them ask anything they want to know and answer their questions, I have found it not to be so embarassing for me and as well they aren't scrambling to figure out what to do with me. When you are on a first date for example and have a grand mal you may feel like that person may as well seen you naked because you didn't want that part of you exposed. I am sorry to say the embarassment will sometimes rear its head even to those of us that szs has been apart of all our lives. Just remember you are a very special person that has a few unique qwirks and don't let anyone make you feel like you should be embarassed. I will keep you in my prayers

Sue we did stop the med right away after that second dose. It didnt even cross my mind to tell them that i cant take over 2000mg of sz. medications a day and im already on my depikote and tegretol and thats already 1900mg a day between them and if i would go any higher the same thing would happen like the nuerontin caused. What did they end up doing to help with your pain so it didnt interfere with all this?



Thanks Scared2285- i do have a medic alert bracelet! I didnt start having sz. until last year when i was 19. So its been a whole new thing to deal with ontop of everything else!

Hi tos8,
I'm glad you stopped the neurontin you played it smart! What I took for pain in place of the neurontin was tylenol with codeine but only for a short time since it can be addictive. Then I started taking aleve 1 pill every 12 hrs. and that did a great job getting rid of the pain. If you should try either of these meds check with your pharmacists first to make sure they won't interact with the other AED's you take. I wish you the best of luck and May God Bless You!

Sue