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,
Your sz. sound very similar to mine. I'm no neuro but what you are describing sounds a lot like my clonic sz. when you're in and out of it and can't do a thing what concerns me is when they last over 10 min. this is known as a status sz. and can cause more brain damage. I started to have absence status sz. a few yrs. ago when I was put on the drug neurontin for headaches from a concussion I got when I was in an auto accident. After I went off the neurontin the status sz. stopped completely. What I find interesting is how your mom can bring you out of these sz. with her voice, this may happen do to the sound of her voice. Some people with epilepsy have audio and visual sz. and that's when certain sound or lights can trigger sz. but in your case it's stopping the sz. be sure to mention this to your neuro and I would also look into taking keppra to see if it helps you.

I wish you only the best and May God Bless You!

Sue

I am going to see my neuro tomorrow, so hopefully he can help me. The sz. are taken a toll on me, my speech now will slurr and its drawn out, like I have a hard time thinkin what I want to say and ill be in the middle of a word and ill get stuck half way in the word or I get my words mixed up. My neuro did tell us he wanted us to call 911 if ive been in one longer the 5 min, but my goodness we would be callin 911 all the time then! So we said thats impossible to do. My sz. started back in may and we are thinkin even befor that when I started takin tramadol for pain. So they stopped me from takin it, but my sz. never stopped. Yes we have notices certain noises will send me into a sz. we picked that up after like the 4th time of me being in one of the settings. Other then that I dont know what triggers them, They just happen and theres not a thing I can do about it. This is my second time have one at church! The first time being in service and then this last time being in sunday school, very very embaressing! The people in there are only from 18-30 so it scared them to death! 4 people saw me havin it, but they were so stunned and have never seen a sz. they didnt say anything! So the 2 people in front of me that I have explained to them what to do for me incase I would ever have one in there couldnt even help me right away because nobody said anything, and they didnt no until finally some one told them and by then it was because I was about to fall out of the chair. Nice huh? But im very silent when I have them, so like I said inless your talking to me or looking at me you would not know im having one. My staring ones, they even have trouble because I "look" at them, but im not really looking at them and the one time my brother was with me when it happend and he said I was repetitive, I kept saying "no", But I was not aware of it. Im not aware at all when I have those sz. Im sorry, its all just crazy tryin to figure out what my brain is doin and goin threw all of this. Thank you so much for talkin with me! Its really helpin me understand some of this.

I am being upped to 1200 mg of tegretol a day. He said he expects me to still be having seizures. He said we still havent ment my maximum level of tegretol yet and when I do and if I would still be having seizures then he will put me on a second med. Also we agreed if my sz. would last more then 15 min thats when we should call 911.

Hi tos8,
Everyone has their own opinion but I don't like what this neuro is doing from 37 yrs. of sz. and 2 brain surgeries I know that if I were in your place I would see a different neuro or better yet an Epileptologist (epi) Dr. specializing in epilepsy. If this neuro thinks that one AED will control your sz. they are wrong especially with the types of sz. you have been having. It also shows me that the neuro isn't doing his/her job by just agreeing to call an ambulance if the sz. last over a certain amount of time. The neuro should be trying to stop these sz. with new AED's for you. Check your private messages for more info. Here's wishing you well and May God Bless You!

Sue

Hi tos8,
I got you message and I think you are playing it smart keeping a record of everything. Take note if the sz. happens when you are under more stress,tired,sick, if there's bright light or loud sounds, or a low pressure in the weather these are all things that can cause sz. for many people also another thing that can trigger sz. is to much caffeine, and to much starch food and carbohydrates in a persons diet. Also if theres any heart problems or if a person using a cell phone it can trigger sz. also.
If you want to get a lot of info. check out the web page I mentioned and another one where you can learn a lot is brainmind.com

Here's wishing You well and May God Bless You!

Sue

Well I made it up to 1000mg of tegretol and I cannot handle that dose, it makes my vision go crazy and I feel icky with it. That is way to much medican for a person to take. I dont know how people go higher then that. We are calling my dr and he instead of him keep uppin my tegretol he needs to put me on another med with it.

Hi tos8,

It sounds like your tegretol level has become toxic call your neuro IMMEDATELY and get a drug level blood test done along with a CBC (complete Blood count) If you're having double vision, having a hard time walking,or even standing get to the hospital emergency room right now! The drug level is to high and it's poisoning your system this happened to me a few yrs. ago and I was down and in bed for 4 days thanks to my former neuro who kept pushing the tegretol level higher and higher. You take it easy and let me know how you make out. Wishing You Well and May God Bless You!

Sue

Well I had called my nuero yesterday and he wanted me to try and hold out until thursday, was hoping it was just side affects. And yesterday was TERRIBLE! It made me so sick! I could hardley move because I felt so drugged and my vision was crazy and I slept for most of the day. And today I have no side affects at all. Nothing. No blurred vision no nothing. So we will see how tonight gos! I also had a huge gap into taking my meds last night from yesterdays morning dose, It was like a 17-18 hr gap. So I dont if thats playin a part in it. But ill no tonight because i wont wait 17hr in between to take my next dose like I did last night. I go and get blood work on thursday.

Hi tos8,
I'm glad to hear that you are feeling better and that you are going to get some blood tests done. You might want to call your pharmacist and tell them exactly how you felt I've found they know much more than many Drs. I've seen over the yrs. You take it easy and don't let the Dr. push you into taking to much meds. I wish you only the best and May God Bless You!

Sue