How certain are memory problems?

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Dignan

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I hear alot about people with E mentioning memory problems, either from years of seizures or years of taking meds.

I wondered how certain is it that someone with E will have memory problems as some point?

With this question, I am assuming that for the most part the person would have seizures under control, since I understand how having many seizures, totally uncontrolled, could cause memory problems.

But what about on meds, a seizure now and then, generally controlled. Anyone with any thoughts on if we are all destined for memory issues, or if it can be avoided?

My neuro said that it is not guaranteed, but he may just have been trying to be positive. So I ask CWE..
 
my own experience, I started having seizures about 7 years ago. Like clockwork I would have a TC about every two months. It screwed with my memory fairly quickly. Not terribly overwhelming, but pretty disturbing none the less. There would be names of things I had worked with for years and couldn't recall the names of. Often I would not be able to bring up a word I wanted to use in a conversation with someone, I knew what I wanted to say just couldn't recall the word. Most times I would remember the word or name after so many hours, sometimes after a day. I took Dilantin for about 4 years, and now come to find out it wrecks havoc with ones memory. Usually the farther I got from the last seizure, I would start remembering a little better. A little. It's now been a year and a half since my last seizure, and my memory is much, much better, though not as good as I remember. Some people tell me its just an age thingy. They could be right, but I don't think they are totally right. It's not debilitating in any way, so I just roll with it, basically like I did before. Just remember, everyone is different and my experiences may be totally different than others. But I think I can say with a fair amount of certainty that seizures and many AED's do effect peoples memory, imho. Hope that helps a little.
 
I had my first seizure about 11 years ago. It was so bad that I had to be put into a coma for close to a month because they couldn't get the seizures to stop. When I'd was brought out of the coma I'd lost around 10 years of memory. I had no clue who the guy was that I was dating, I had a tattoo that I didn't know I'd gotten and so much more that you'd think you'd never forget. Some of my memory in that 10 year period still there but no a whole lot.

When I first started having seizures I may have lost an hour to a few days of thing that happened before that seizure. My seizures aren't as bad or as frequent now, about 7 complex partials a month with a few tonic clonics a year, and my memory starts to fade away after a few months. Again there is still some there but not as much as there should be.

I have a good bit of trouble remembering words. I can be looking at the object and just can't think of what it's called so I'll describe it. There's the big thing you sit on in the living room (couch), cold thing in the kitchen (fridge), and so many more words that you think it's so stupid that you think you'd never forget what they are called.

I think my memory is more due to my seizures than it is my meds.
 
Thanks for sharing your experience. As for me, I took Dilantin for 15 years and I had never noticed a memory issue, at least until I stopped taking it several years ago. Now I take Keppra, and I feel like you, not debilitating memory issues but I have trouble finding the right word or name alot. I also haven't had a ton of seizures (often going years between TCs), and I haven't had any in quite awhile (unless I'm missing something subclinical going on).

I'm fine in normal activities and conversations, but things dont stick in my mind like before. It feels like my ability to focus has been affected. Maybe it just the Keppra and if I switch to something else it will improve.

Over the long term, memory loss is one of my greatest fears, as it affects so much, including your personality, and is such a big part of the ability to live normally.

I've heard neurofeedback may be helpful at improving memory, but I dont know how well that has worked for memory specifically.
 
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It's been 15 years since my first seizures. I have well-controlled epilepsy, and both my short- and long-term memory functions are fine, probably better than than that of my healthy-brained siblings. :) Aside from the memory blackout that occurs immediately after a tonic-clonic, the only time I had any memory-related cognitive issues (word recall, mostly) was during the 6 months I was on Zonegran. I had no problems when I was on Dilantin and I don't have any now on Lamictal. I had a neuropsych evaluation done 5 or 6 years ago, so if I suspect any decline I can do a follow-up to gauge the extent. So far, so good.

I do know that I am luckier than many, in that my seizures developed in adulthood, and have responded well to medication.
 
Nak,

Like you, I've been pretty fortunate over the 25 years since I was diagnosed. But, unlike you, I've been dumb enough to stay on a drug I suspect has been affecting my memory for 5 years now..
 
Unfortunately, all drugs that depress signaling in the central nervous system can potentially cause memory loss. As with most side effects, they tend to be dose-dependent, so it would be great if there were standardized complementary treatments (like diet or neurofeedback) that would allow dosages to be kept to a minimum.

There are a lot of individual factors at play of course, and not enough longitudinal studies to make it obvious which med will have the least memory-related side effects.
 
My hope there is that it would be dose-dependent only, so adjusting dosage or switching drugs would cause memory issues to improve.

Like you, I have been lucky. Well controlled, no memory issues until I ended dilantin and went with neurontin alone and now keppra alone.

My fear is some sort of long term cumulative effect from drugs and seizures causing memory issues, and my hope that it is something that is avoidable or preventable, and not just a certainty.
 
It's good to see this string. I have also been well controlled, the handful of seizures in adulthood and all in all lucky. I do however wonder sometimes about the memory issues and the long term effects of the drugs - I am on Lamictal and Keppra. Mostly I feel fine but sometimes a colleague at work will ask something about a recent meeting or when I last met someone and I'm not always sure if I know the answer or if I am not absorbing everything. A little scary. Thanks all, at least I know I'm not the only one with concerns about this.
 
Yes, that's why I'm always on the lookout for things that might help memory or stave off some of these types of things, should they actually occur. I know exercise helps, so I do that, but I'm curious if some of our neurofeedback folks here noticed any improvement in memory.

I've heard NF can be used for memory, and I know some folks use it as adjunct or alternative therapy for seizures, so I wondered if an improved memory was a happy side effect.

Maybe memory issues wont happen, but it can't hurt to put yourself in the best position possible.
 
Good point. I fear what may happen years down the road if i do not take care of things preemptively as I can. I already don't remember bad memory signs. Maybe its always been bad. How could I know?
 
new drug and (a controlled substance)

My E-doc gave me a script today that makes me nervous. He said if I have an aura or after a seizure (because they usually come in clusters) LORAZAPAM. Like a valium he said. I am sort of prone to addiction so it makes me nervous. He said it rapidly enters the blood stream and blocks a seizure starting right away. but this can not be used regularly only when you know its coming. Anyone else heard of something like this?
 
Nakamova said:
It's been 15 years since my first seizures. I have well-controlled epilepsy, and both my short- and long-term memory functions are fine, probably better than than that of my healthy-brained siblings. :) Aside from the memory blackout that occurs immediately after a tonic-clonic, the only time I had any memory-related cognitive issues (word recall, mostly) was during the 6 months I was on Zonegran. I had no problems when I was on Dilantin and I don't have any now on Lamictal. I had a neuropsych evaluation done 5 or 6 years ago, so if I suspect any decline I can do a follow-up to gauge the extent. So far, so good.

I do know that I am luckier than many, in that my seizures developed in adulthood, and have responded well to medication.
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I had problems when I was on Tegretol but am fine now on Depakote and phenobarbital.

Dignan, I think in general, (just my impression) that the people who do have memory issues are more likely to be the people writing lots of posts complaining about it (justifiably so). If everything is fine, no need to write a post so that may skew the impression one gets to the extreme side of OMG, everybody with E is losing it!
 
Aloha,

That makes sense. I guess its like anything else. You hear more about the problems and less about when things are corrected or nothing from those with no problems at all.


Janus, I'm no expert but lorazepam (ativan) is a drug I believe they use in hospitals to stop seizures cold, especially when multiple seizures are occurring or in status situations. I've also heard of people carrying it with them, say when travelling, just in case. My understanding is that you use it once to stop the cluster, then go back to your normal routine.

I'm sure others know more about it than I do.
 
Thanks Dignan. Yes the doc said some carry it in a container (maybe around the neck) for this like this.
 
I've been taking lamictal for almost two years now (not exactly sure). My short term memory is a lot worse than it was prior to taking keppra or lamictal.

I sort of modified my diet to be a tad healthier with better nutrition and healthier fats. I also eat tuna fish and take omega3 tablets like 4x a day my neurologist says it's safe. Anyway, it seems to improve it some. I assume exercise and cutting out caffeine would really help boost my memory. I'm cutting out caffeine out of my diet now so...

My first seizure was around 2012 in December, and the yfirst thought it was syncope. I had another about 6 months, then went about 8 months seizure free. Until around june? 2013? I finally went to a neurologist, and he diagnosed it with the first EEG. The only memory problems I have from seizures is about 20 minutes after and I'm confused but I usually recall what I did prior to it.

Just ask your neurologist about fish oil or whatever you could do to improve your memory at least a little bit.
 
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