Hi guys,
I don't have seizures too often anymore but my memory is still pretty bad, especially my short term memory. For instance, I will go to the movies or dinner with my friends and a month later they will remember and talk about details of the movie but I have trouble remembering that I even saw the movie. The same thing happens with books that I have read. I don't even know what they are about. I can't recall events in my life and it is truly a big problem. I will be going back to work soon and I fear that it will interfere with my performance. I try to write things down but I can't write every little thing that happens. Does anyone out there have the same problem???
-kathy

Are you on any medication? I have noticed that with the Dilantin, I have a terrible time remembering things from short-term. It's like I have trouble getting the right word from my brain to my mouth! It's kind of embarrassing, especially at work, where I am usually on top of everything...now I have to be reminded of almost everything and have "brain fades" during the middle of my conversations with people (what was I talking about?). I have only been on Dilantin for 6 weeks after my first seizure.

Does it happen around a specific time for you? Morning, afternoon, night? Mine is mostly in the morning, but lasts until late afternoon, probably cause I take my Dilantin at night.

sorry double post

[This message has been edited by llamashackgirl (edited 06-26-2003).]

I don't have seizures anymore, but after I did have a bunch last year I forgot some things from my life...like a trip I took with my boyfriend. I barely remember going there. I used to have the greatest memory of anyone I knew.

I do have trouble concentrating on reading now...doesn't make schoolwork very easy or enjoyable. http://www.healthboards.com/ubb/frown.gif (I am on Tegretol.)

i am having a lot of trouble trying to get through school because of the same thing. The whole situation (I got epilepsy at 21 -nearly two years ago), combined with the medication gives me severe depression, lethargia, and that doesn't help.
I'm fairly good at faking like I can remember things: but it scares the sh## out of me. What is going to happen when I get older if now I can barely remember a trip that I took with four friends a few months ago. Will it get progressively worse?
???

Hi KittyMom,

Yes, I too suffer from short term memory loss. At times it is very embarrassing. The way I deal with it most of the time is make a joke of it. When you think about it, do we really have any control over it? So why not have a a little giggle!

Marcia http://www.healthboards.com/ubb/smile.gif

oh yes , it was espicially bad a couple months ago, it was very frightning. i didnt know if it was because of my seizures or of having my brain swell up so much because i had menigities. I lost the months of november thru april. i dont remember anything. in may i tried to get better at it, write things down on the calender. i would purposly read books to try and get my brain to 'work'. i still have short term memory problems but i try not to focus on it becuse it only gives me frustration, too bad we couldnt get a doctor on the board from time to time to give us some advice on things like this.

To Those Who State They Have Memory Problems;

I don't think any of us have total memory loss. My name is Robert and I am a former epileptic which I did and still to this day am going through the same problems with short term memory. We all as epileptics have memory if you'd work on it you might realize that when you're trying to remember things or you're put on the spot by somebody your memory seems to fail, but it hasn't failed you. You just simply have a memory recall problem as I do. As I indicated I used to be an epileptic until one night I prayed to God and asked Him if He loved me He would deliver me from my seizures and apparently two years later after the prayer I had awakened from the most off the wall and peculiar dream and it was about UCLA (the school) and what a wonderful neurological program they had for people with epilepsy where in my case I had both Gran Mal & Petit Mal seizures. That morning I called them they said come on up to West LA and we'll see what we can do for you. Six months later I am healed from the epilepsy period!! Please if you want help with your seizures, memory problems and even impulsive behavior (very common in epileptics) call them. God guided me in the right direction and I with Gods help feel for all of you with this neurological disorder and trying to guide you to a possible cure depending on the type of epilepsy you have in which my seizures were caused by a blood vessel malformation on the right temporal lobe of the brain. They will put you through some tests to find out if you have AVM and will test you for where your memory is in the brain. If you have injury or AVM (blood vessel malformation) and say your memory is on the opposite side from where the injury is you can be a candidate hopefully for a surgical procedure which can either decrease the seizures tremendously or eliminate them period as in my case. All you epileptics out there call UCLA and see if they can't help you like they and God did me... :-)

Voice for a little guy... Please don’t laugh at me http://www.healthboards.com/ubb/wink.gif I know that Jake has memory issues. He was put through an Early Childhood Intervention Evaluation in April, he was 14 months old at the time and he scored at the 6-month level relating to object permanence. IE: If you place raisins on a tray, let the child see them, then you cover the raisins with a cup. The child then remembers that they are under the cup and picks it up. Needles to say he never remembered they were under the cup. Out of site, out of mind...

We have also seen him lose skills. This is most evident in things such as clapping, waving by-by, throwing/giving kisses and speaking. At 10 months he was saying 4 or 5 words well, Momma, Dada, Inny (Jenny – his sister), key-key (kitty kitty), wan baba (want bottle). By Jan all language skills where gone, he was back to babble, he couldn’t clap, couldn’t wave, and the hardest part was he had forgotten how to give kisses. http://www.healthboards.com/ubb/frown.gif

We couldn’t get the Dr to give us a solid reason for these losses. He told us it was probably due to memory interruption from seizure activity and nothing more, but he couldn’t say for sure.

Mommy’s theory: Due to the fact that all of these skills were new (given his age) very little had been moved to long-term memory, so there was no place to retrieve them from, it simply was GONE.

Over the months we have worked really hard with him during seizure free periods to move information from short-term to long-term memory. We do things over and over and over. We also try to present language in several formats. We know that he’s TLE has a focal point located on the left. This may impact his language abilities, both verbal and written. It could present its self in several ways from inability to understand incoming information to understanding incoming information but the inability to produce a response either verbal, written or both... Any advise on helping with the language skills would be most helpful.

Thanks again everyone for putting up with me here. But it helps me so much to know that what I'm seeing in my child is not a question of intellegance, but how E is presenting it's self in him.

Hugs all round,

Lisa and Jake

Kathy,
I can so so so relate to your question. I recently lost a job for this reason. I have an IQ between 128 and 135 but I can't keep a job at a Dairy Queen because I just don't "catch on." You may have a problem in what is called "working memory." It is common in epilepsy and it mimics ADHD (or ADD). You can't absorb instructions given you. You can't remember where things are or how to do certain things....or when you are given instructions, they have to be given slowly so that you have time to absorb one before the next is given.

If you are like me, you are just terrible at "multi-tasking." I take down lots of notes too, but I agree, you can't carry them all around with you. I had a job where I had to learn how to use a computer (not windows....old fashioned program on it). I "stick 'em" notes all over my computer, but my superior made it clear that the notes had to come down. They didn't look "appropriate" for the office. (They really weren't that big). If I'd known what I now know, I would have said that the notes were a "reasonable accomodation."

Lisa,
I read just recently where people who have their first seizure when still young (I think 11 and under) are usually able to adapt their brain. In other words, if a certain task is usually performed by one portion of the brain, a young brain is able to adapt and learn it in another section of the brain. The highest learning problems seem to be with people whose first seizure occurred in their adolescense.

Don't know if that helps any. Also (just a wild thought), is autism suspected in your son? I was just thinking about the way you said he'd forgotten tasks he once knew. That's common in autism, but I can also see where this could be a problem when seizures are not under control. I'm very quick to label "autism" because I have a dd who is autistic-- so take that with a grain of salt. http://www.healthboards.com/ubb/wink.gif

Sandy

Kathy,
Here's another though: My MD recently started me on STRATERRA which is for ADHD but helps in those memory (working memory) areas. It helps fight the sleepiness and "dull thinking" that occurs along side meds like DILANTIN.

Sandy

Thank you all so much for your responses!!! It is so nice to know that there are other people who understand what I go through each day. This memory loss thing has really put a damper on my life. Sometimes I think what's the point of life if you don't remember any of it? Despite the fact that I have these kinds of thought in the back of my head I still get up each day and try to make the best of things. My palm pilot has become my new best friend and I write down everything! From directions to the grocery store and my best friend's house to movies or interesting things that I have seen that might later become a topic of conversation, it's all in there. I wish it were all in my head but I guess we all need some sort of challenge in our lives and this one is mine. Thank you all for your support and I will definitely do some research on each of the great things that you all suggested.
Thanks again!
Kathy

Memory is a complex 'mechanism', so obviously there are many potential problems that can go wrong. I have had had a long stretch of time where my seizures were totally uncontrolled and frequent that my doctors had told me that they could not promise to be able to keep me alive. 3 times I went into cardiac arrest, status epileptics was a weekly event. I was taking a toxic dose of a memory robbing AED (don't they all seem memory robbing?). After 25 + years they came out with Lamictal. 6 years earlier I had a VNS (I was in the study 8/1990). Amazingly, the VNS and Lamictal restored most of my memory. I still have some STM memory loss, but no more than anyone else my age. My LTM memory is likely better than most people in my age bracket, and my ability to think clearly, without the 'fog of epilepsy' has improved. It is greater than my peers. I still have some seizures every day, but I (if you will), own my own mind. No one has ever conducted a 10+ year study on the effects of the VNS.
The VNS does not work for everyone. Lamictal does not similarly affect everyone either. I had spoken to others who take Lamictal. Of those whom I had spoken to, they have experience the same reaction: It makes you feel better. It does not control every seizure.
It greatly improves your overall quality of life. My Epileptologist says that it may be possible for me to be under greater control using different, depressing, mind robbing drug. No way. What good is total control if life isn't worth living? What would you pick? A better life with some seizures, or a miserable life with no seizures?

Hi,
I've had complex partial and absence (petit mal) sz. for 31 yrs. and my short term memory isn't getting really bad. Often I will ask my husband the same question 2-3 times in one day.
I've had brain surgery twice to help reduce my sz. and my neurosurgeon told me that the hippocampus of my brain has shrunk from yrs. of sz. and this is what is causing me to have short term memory problems.
If you have had sz. for quite a few yrs. you might want to talk to your Dr. about doing a test on you to check the hippocampus of your brain. Another thing that has helped with my short term memory is doing word search puzzles, and reading. Try to keep your brain very active and you could possibly see a difference in your memory, I know it's helped me out a lot. Here's wishing you well and May God Bless You!

Sue

I have tried to read and that doesn't seem to help my memory loss. I still have it just as bad and when I am toward the end of the book, when they refer to something at the beginning of the book, I find myself saying, "Oh yeah, I forgot about that!"

God Bless,

KittyMom

kathy i think alot of it has to do with the meds and the reason i think this is because i have been having grandmal seizures for 6 years now and i have been on every med available in my state and after the last possible drug failed me (topamax)i was takin off of it and i too had the short term memory loss but after being off of it for almost 2 weeks now i find that i am remebering things i thought i had forgotten and im not having as much of a problem with the memeory loss i still have a little trouble not not near as bad as i did when i was all drugged up on aed's i almost feel as though i am living in a whole new world its amazing at the difference i have notcied in just 2 weeks and so has my family i can actually recall things i am doing now im not getting lost anymore like i was (that was horrible) and i can remeber things from the past couple of years that i thought were gone im still having seizures but atleast now i can remember having them lol

------------------
mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

cbb,
I got through 2 bachelor degrees and a masters. My master degree was really tough. I was having seizures almost everynight and I would go to school some days and not even know what classes I was taking or what school I went to!! Don't give up. Believe in yourself. Sometimes, believing in ourselves is the only thing that we can depend on in life and believe me, it will help you get through some tough times. Be honest with yourself and admit that you are going to have seizures and a lot of difficulty at times. Some days will be good and some days will be almost unbearable. Being aware of this from the start will help make the more difficult days easier to handle and not so shocking and unexpected. On your good days study a little harder and get organized. You can do it!
-Kathy

Hi,
I have been dealing w/my memory problems for some time now. I have had Epilepsy since puberty (about 25 yrs).
My long term memory is pretty much completely gone. I barely remember anything. Even things like the birth of my child (just bits & pieces)
My short term memory is also failing. I will rent the same movie over again w/in a month's time. I will ask my husband the same questions 2 or 3's over w/in a day.
It gets very embarresing & I am sure it is annoying for my family.
We don't even want to start on how I can't hold a job down, even the most menial one.

Joanne