new to this - but glad you're out there!

[Ybatko]

Hello Everyone,

I'm not sure what took me so long -- but I'm glad that there is a forum for people like myself willing to share their experiences and feelings. I have been living this epilepsy since I was diagnosed 27 years ago (at age 13 I believe). My seizures have been pretty well controlled but lately, I have been concerned about my memory loss (mostly longterm stuff -- over a period of one year or more). I've been on Keppra & Carbatrol for a couple of year or so. My husband said that he has taken me to different places (ie: a strawberry field to pick strawberries, or to a lake several times, or watched a movie with him -- a year or two ago) but I have no memory of ever being there or ever watching the movie. Anyone else having this problem....I'd really like some advice. I'm finally going ahead with a cognitive study test -- suggested by my neurologist. I don't know if this test will help with anything, but need to have a peace of mind that I'm not going crazy.

 

[Bernard]

Hi Ybatko, welcome to the forum. :hello:

Yes, memory problems are a common complaint that could either be a lingering effect of a seizure or a side effect of the medications you are taking.

A number of people have reported that their memory problems cleared up after stopping or switching meds.

My wife had severe memory problems when her seizures were uncontrolled. Once she got them under control, her memory slowly started returning.

I firmly believe that all your memories are still there in your head. It's just the recall mechanism is not working 100%. It can be fixed and you can retrieve your memories again IMO.

 

[Ybatko]

Hi Bernard,

Thanks for the feedback on this matter....really helps to know that others are experiencing the same things.

 

[Holden]

I'm in the process of (I hope) weaning off of medication altogether, after 7 seizure free years on dilantin.

Memory loss was my primary complaint, although I also feel that the drug has clouded my thought processes/problem solving ability in general and made me absent-minded in a way that's not consistent with my pre-medication personality. For me, it took a change in primary care physicians to get any traction in making this point to my doctors. My neurologist turned out to be fairly agreeable once we talked--but the old PCP kept trying to convince me that if the seizures were under control and I was basically able to function there was no point in talking with specialists and changing my treatment, so it took a long time to even get the converstaion going.

Since, as Bernard notes, the memory loss could be a lingering effect of seizures OR a side effect of the drugs, or maybe even a little of both, it's hard to know where to pin the blame. I still have some time to go before I get the drugs out of my system (plus I'm on different drugs than you are), so I'm not in a position to make any bold proclaimations here, but I will say that I feel as though my mind and memory are functioning at a higher level than they have in years. But the flip side of all of this is that I have been having other unpleasant efefcts of withdrawing from the medication. The verdict is still out on whether these are passing symptoms, or signs that I will ultimately need to return to taking medication.

In no way am I suggetsing that getting off meds is the answer for everyone (and it may not turn out to be the answer for me either). But I do think it's worth talking with your doctors about whether these issues are neuroloical or biochemical. Of course all of that is complicated by your need for seizure control. Even if you knew for certain that the drugs were the culprit, that wouldn't necessarily mean that coming off them was the right thing to do.

As a side note, I relate wholeheartedly to the comment about forgetting movies you've seen. One of the first signs that my memory was compromised was that I started forgetting whether I'd seen a movie (sometimes even if I was watching it again), or who was in it, or what else I had seen them in. I used to have unsually sharp recall of trivial facts like that (mostly about music and movies, but I alos used ot remebr stuff like the names of everyone in my kindergarten class and what street they lived on), but not anymore. Bringing that example up with my doctors was actually what jumpstarted the conversation about getting off of my medication. And I was surpised when my neurologist took this complaint seriously, even though I made it clear that recall of trivia wasn't essential to my daily life. "But it's fun to know that stuff" he said. I guess I'm lucky to have a doctor who understands that.

And three cheers for me, for writing a book-length reply! "Talking" too much is another way that all of this stuff changed my personailty. I wasn't always such a blowhard...

Anyway, best of luck to you.

 

[POSITIVEPERSON]

Hi YBATAKO & HOLDEN: Welcome to the board and nice meeting you. I am going on 52 yrs old next month and have epilepsy since I am 11 yrs old. I have had problems with memory and meds and the memory usually comes back with a switch of meds. My husband and usually make jokes about the memory I lose ,because I have such a excellent memory normally.

Over the years I have tried all the meds available in USA & Canada and some effect the memory worse than others . I can tell you from my own experience of living in NYC and their was a fire alarm and we were cleared out of our apartments and the firemen asked me where I lived & I couldn't tell him . That was very scarey and embaressing !!!!!! I complained to the dr the next day and I was switched . I seemed to do better on certain meds . Some of the newer ones really did me in.

Now that I ran out of med I am using homeopathy and the gard diet . This is the second time I try both. This time I am desperate ,I have no meds left and I seem to be more accepting of the both .I guess atititude is everything!!!!!!

I have used acupuncture, reflexlogy, homeopathy, vitmains and herbs. If you have any questions about any organic treatment ,feel free to ask me!!!!

Riva

 

[Ybatko]

thanks to all....

Hi Guys,

Thanks to all of you who shared their experiences -- (I also have noticed that my problem thinking skills are poor -- and my mind seems to be foggier than ever compared to how it was before my current AEDs). I've decided not to go thru with the memory testing....after all, I think that would only confirm that the culprit is either the AED or the disorder itself.... at this point I'm not ready to add yet another drug (which the Neuropsych. said might be one of my options during my consult with her last week) -- who knows what other side effects I'll have to deal with then? I'm relieved to know (especially after reading your responses) that this is a normal part of coping.
I've decided that I will have to just deal with it....as I have done before. Perhaps I may need to change my meds in the future - when I'm ready to deal with all the crap that comes with changing meds.... But for now, I think it would be best for me to leave things the way they are. Best of luck to Holden -- hope that all goes well for you and being AED free.

 

[RobinN]

Ybatko - My daughter had a bad incident of memory loss a few months after her first seizure last October. She suffered 2 months of retrograde amnesia. A scary time for all, and we have had different theories as to why this happened. All I know it was not normal to her. I have since begun to research how nutrition can play a huge role in this disorder.

I am not sure why we are programed to fight this idea, but we all do it. Hopefully you can find physical health and be able to pull back on the AED so that you are thinking clearly.