I have a question. I have been getting little sleep, my little brother got very sick and is in the PICU and he ended up trached and vented. Its been a long 5 weeks, lots of ups and downs! So we know I have simple and complex partial seizures, i was on keppra, depakote and trileptal. However a few months ago i weaned myself off the keppra because it was making me to sleepy and i did tell my dr after I did it and he was ok with it as long as i was stable and he said if my seizures started to become more noticable again then we could just add a diffrent med. So now onto my ? im having moments that im loosing, is the only way i can put it. I relise it after im confused and just feel off. And just other little things that are WAY off thats just odd. And honestly I dont even know how to explain it to my dr! Like im also getting these feelings and its kind of like my brain jumps, and i meen like it kinda of actualy feels like that litterly. Or ill see what i thought was lightning or somthing else and its just me that sees it. And again after those moments I just feel off. Its very odd and I cant explaine it. Anybody exsperiance somthing anything like this?

Hi tos8,

What you are describing sounds like what happens to me right before a complex partial sz. I will start to see colors flashing back and forth in my eyes and I get muscle spasms around my mouth but I'm concsious the entire time. My Dr. told me these were simple partial sz. (aura sz.) that lead into absence or complex partial sz. for me. I started taking vimpat about 1 yr. ago and since then all of that has stopped and I've had very few complex partial sz. In regards to loss of time and confusion this happens to me each time after I have an absence or complex partial sz. I will be doing something cooking, cleaning, etc. and then I come out of a sz. and find myself in a different room and I've done all the work I just don't remember. The best way to describe it is someone whose had a few to many drinks and they don't remember driving home. I know keppra increased my sz. and depakote along with mysoline and diamox worked great for me but then my body got used to the depakote so now I take vitamin B12 1000 mcg. once a day and that has done wonders reducing my sz. I wish you the best of luck and May God Bless You!
Sue

Yes and I have the muscle twitching in my face and my left arm and hand when this happens! The coloring and flashing is really irritating me because thats happening very frequent, and after it happens, I get startled and its just in general a weird feeling. I HATED the keppra and there was no way I was staying on it and my dr wouldnt take me off of it despite me telling him i wanted off of it, so thats why i took myself off of it and then i got a new dr and i was able to tell him i went off of it and he was fine with it as long as my seizures didnt increase, but he is atleast willing to put me on another med where the other dr was not. Yeah as for the loss of time for, aparently i talk and everything and i dont remember it. My keppra dose was huge, so my depakote dose was cut down to 1000mg a day and my trileptal dose was cut down to 1200 a day. But now that im off the keppra im on very little doses compared to what I was on. Im waiting on my dr to contact me back to see what to do. Hopefully we can cut the seizures back down.

Hi tos8,

I found out what causes the colors in the eyes is when the sz. is coming from the opptical lobe which is the back of the head where your eye sight is. The neurons get fired up and that's what triggers the colors and in turn leads to a sz. You should ask your Dr.to do a DNA test on you, this will show what meds will work the best for you with the least side effects. I took many sz. meds (AED's) over the yrs. and nothing worked then I found out the Dr. can do a DNA test on a person and find out what med will work the best. Sometimes Drs. will refuse to do the test because they are making money from the pharamcy and this is when you need to speak up and tell them to do the test or report the Dr. to the medical conduct board in your state.
The next time you start to have a sz. tighten up all the muscles in your body and make your hands into tight fists this can stop the sz. My neuro I had back in the 1970's told me to do this and it has worked great. Another thing you can do is put a cold washcloth on your face and the back of your neck this will calm the neurons down in your brain and stop the sz. it's known as "cold water therapy'. I wish you the best of luck and May God Bless You!

Sue

They come on so quick I wouldnt have time, atleast i think they come on quick. Im still waiting on my dr to call me back, hopefully tomorrow. Thanks sue!

HI tos8,

I want you to start cold water therapy on your own if you are willing what you need to do is start keeping track of how many times you yawn each day and evening and write down what time you yawn.
2. Take your temp. 3 times a day and each time after a sz. and write down what your temp. is
3. Put a cold washcloth on your face and the back of your neck 3 times a day at the same time and each time you get a warning of a sz.


I was in a medical study where they have found that yawning cools the brain and helps reduce sz. By keeping track of your temp. you may see a slight increase in your temperature and in turn have a sz. I also found that on the days I didn't yawn as much I had sz.

When I started the cold washcloth on my face 3 times a day it lowered my temperature down, calmed the nervous system, and stopped the sz.
Give this a try for about 2-3 wks. and take note of what you see. They found my temperature was higher each day before I had a sz. and also they found a low pressure in the weather as well as cell phones were triggering sz. for me. I wish you the best of luck and May God Bless You!

Sue

Thanks! I defently will do all that. As for my tempeture thats a hard one because it gos up and down ALOT because I have RSD and it go worse and its now caused an eregular temp change. And I spoke with my dr today and he got a med orderd that im supposed to take tonight and tomorrow night to hopefully break the cycle. And after all that I need to get labs this coming week and check my levels and we will probley start vimpat.

Hi tos8,

I'm wondering if your temperature going up is maybe triggering some of your sz. I'm no Dr. but I know it can effect some people because the warmer a person gets the more the neurons in the brain fire up and in turn it can trigger a sz. If I may ask has your Dr. ever told you what has caused your epilepsy? Mine came from a scar tissue on the right temporal lobe.

I've been on vimpat for over a yr. and it has helped me a lot. I have only had about 5 complex partial sz. and I've had 30 or more less sz. this yr. than last yr. I will let you know that vimpat can cause a rapid heartbeat and sometimes dizziness for a few seconds. Once you start taking the vimpat and these side effects continue for over 2 weeks let your Dr. know right away. I don't mean to scare you at all I had these side effects but they went away. Also stay away from anything that has nutra sweet (aspartame) in it and check with your pharmacist what cold meds are safe to take. I take Aleve for cold and sinus and that doesn't mess up the vimpat or the other meds I'm on for my sz. (Diamox and Mysoline).

Also over in the United Kingdom they have come out with a cooling device that is used for people with epilepsy. It's put into the person and at the first sign of a sz. it cools the brain down stopping the sz. It probably won't be in the U.S. for another 3-5 yrs. Here's wishing you well and May God Bless You!

Sue

No they dont know why my epilepsy started, since I was 19 when i started having seizures. They started a few weeks after I had TOS surgery, so we dont know if its linked to that or not. They did an MRI with contrast 4yrs ago when i had my first seizure and it was normal. And i havent had any other testing other then 2 eegs since. And i think the temp change is defently a big reason why, along with the lack of sleep lately. He prescribed me liqued consentrated ativan to take 2 doses last week to break the cycle and it did break it. But today ive started with some of them again. So ill just wait it out again and see if they stop on there own and ill contact him next week and see what to do again.

For me back when I was about 2 is when I fell and head my head on a hard metal frame of a bed. I didn't show any seizures till I was about 10. So you you could of gotten a scar on your brain earlier in life. Keep a tract of your seizure with time and how long they last. My thoughts and prayers are with you.