Long term memory loss

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maggie24210

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Hi there - I've just joined the forum and have written my profile trying to explain reasonably briefly just how severe and debilitating my long term memory loss is. I would really love to chat to anyone else on the forum who has the same problem - up till now I have never found anyone else whose seizures have had this particular result and it is very isolating because no-one else can really understand about it. Thanks a lot folks.
Maggie from France
 
I am missing about five years about of my memory from when I developed my epilepsy. in 07 I think.

these days it is mostly short term memory loss.
 
I had a bunch of stuff go missing when I had the last batch in March. Every time I try and access those memories, there is the same weird image. A a still blue body of water (lake? ocean?) and a green sky. Almost like a 404 error message on the internet.

Jay
 
Whenever I try to think about things that happen around the time I started having seizures all I see is the red and blue strobe light that they used on me during my EEG (I'm photosensitive). I don't remember most of my childhood and I have just a few random meaningless bits and pieces from 10-13 years old. And whenever I try tothink about it I see strobe lights going off in my head. And whenever I try to think of my recent seizures and stuff that is deeply associated w/having a seizure I just end up seeing the lights caused them and the rest is all fuzzy.
 
Thanks for the replies. I don't have the strobe lights or the images etc - although I do sometimes get certain tunes "stuck" in my head that seem to go on and on repeating themselves for hours -this was particularly bad after a seizure. My main problem is this very "weird" memory loss. Sometimes it is just a complete absence of any knowledge of an event - like, have I ever been to London!!!?? I had to ask my husband that recently when we were having dinner with some other folk - very embarrassing and makes you look very stupid when you are actually Scottish! The other weird one is that I KNOW I have been somewhere but have no idea of what it looks like or what I did there. For example, I know, without any doubt, without having to ask anyone, that I visited New York on a trip to the US about 8 years ago -but my husband tells me that I went up the Empire State building, went to some of the famous big stores, went to visit Ground Zero and went to see Chicago on Broadway - I know NOTHING about any of that!! It is like this for so much of the last 35 years - I only developed epilepsy about 7 years ago. Since they finally got my seizures under control about 18 months ago, I can remember what has happened although I can still have a bit of an "unreliable" shorter term. memory.
 
Hi maggie24210, welcome to CWE!

I am sorry to hear about your memory issues. Depending on where your seizures originated in the brain they may have damaged certain areas. Have you had a neuropsych evaluation done? It's basically a series of tests to assess memory and cognitive function. It can be helpful to set a baseline to measure any future changes in memory. But it can also help to pinpoint particular strengths and weaknesses, and the test adnministrator can often recommend particular strategies based on what the tests show.

You might be interested in this story: http://www.ablehere.com/forum/51-epilepsy/8144-does-epilepsy-cause-long-term-memory-loss.html

Best,
Nakamova
 
Hi Maggie,

I've had temporal lobe epilepsy for over 30 years now and have experienced CP and TC seizures. I've tried many meds, too, and had a temporal lobectomy. As a result of this, my memory is bad now. I've had the neuropsych evaluation done as Nakamova suggested, and have come up with a strategy to help me remember some things, mainly names, dates, etc. But sometimes when my two grown children talk about their childhood, I don't remember what they are talking about. They give me the strangest look and sometimes ask, "Mom, don't you remember?" Sometimes I tell a little white lie and say yes, I do remember, but I actually don't.

The thing that I hate the most is meeting people and seeing them a day or two later and not remembering their name when they remember mine.
 
Hi Nakamova and Cint - Thank you so much to both of you - I will reply properly later when I have the peace and quiet to write. I feel better already having read both of your posts and the article you directed me to.
 
I had my first sezure in 2003 and lost almost everything from my jr year of high school on, I graduated in 95. It was a very bad grand mal and I was in the hospital for close to two weeks before I was sent home. I didn't even know who the guy was that I was dating at the time. When he left the room on his first visit I asked someone who he was because I had no idea.

Little bits and pieces are still there, but not much. I like to talk to my friends about the things that we did. One of my friends wanted to know if I remembered the time we stole a car and drove it to New York? I told her that I didn't and couldn't believe that we did!!! She just started laughing - they like playing pranks on me like that, I think it's pretty funny too.

There was a job that I had worked at that I loved. I can remember a ton about it and I think I could go back there and with in a week would be knowing what I was doing again.

Some things just won't stick up there. It took me about 3 years to remember that Presidant Regan had died, and I had watched his funeral on tv. My husband would think I was joking with him because every time something was said about him on tv that he was dead I'd always say to my husband "He's dead? When did he die?" It's taken 3 years and over 100 times asking but it's finally stuck in there now.

At first when I would have a seizure what ever I did that day and maybe the day before I didn't remember. It has gotten better now. Things last up there for a few months before they start to fade away. I always laugh because for me there's no such thing as a TV show repeat cause I don't remember it by the time it's shown again.
 
Hi there to all of you who have written messages here for me. Sorry it's taken me a while to get back to you but I somehow managed to trip and break my ankle quite badly the other day and so have had a few other things on my mind. Still, I'll live!!!

Everything that everybody is contributing is making me feel much less weird and isolated -which is just fantastic - as I said before, only those of us who have suffered from this type of memory loss can even begin to understand it - my husband tries his best but even he has problems (understandably) really getting to grips with it. He also makes a valid point that it is sometimes very hard foro him because he has to accept that I have lost the memories of large parts of our married life - all the nice things we've done, places we've gone - we can no longer share any of that. Perhaps we forget the effect on those close to us sometimes?

I haven't had a neuropsych evaluation done but that might be complicated as I live in France now and don't know if a) it's available here. 2) Although I speak reasonable French, I'm not sure I could cope with a test like I imagine that to be in a foreign language!!! What does it involve - roughly!

I had to smile at your friends playing tricks on you, Valerie. My friends' favourite was telling me that I had borrowed £1000 from them to pay some bills and when was I going to pay them back??? I just about fainted in panic!! -they didn't leave me in that state for long, fortunately!!

I also agree about the TV shows etc - only for me it is virtually every film/movie I have ever seen that I have no memory of - I know that I know the titles but haven't a clue what they were about! I know the names of hundreds of TV/movie stars but have no idea what they look like or what they acted in!! As you say, Valerie, it means I have a whole new world of entertainment out there just waiting to be discovered AGAIN.

I think my memory damage may have been caused mostly by the fact that for a couple of years, I had quite a lot of seizures that went into "status epilepticus" and I didn't actually re-join the conscious world for up to 8 hours!! I've been told that I'm quite lucky that I re-joined it at all!! My doctor believes that that is where most of the damage may have originated.

Anyhow, for the moment - thank you so much for all the contributions/replies so far - it has meant a lot to me.
 
I haven't had a neuropsych evaluation done but that might be complicated as I live in France now and don't know if a) it's available here. 2) Although I speak reasonable French, I'm not sure I could cope with a test like I imagine that to be in a foreign language!!! What does it involve - roughly!
Click to expand...

There seems to be a standard set of tests that are administered (at least in the U.S.), but it would definitely be tricky to do them in your non-native language. The tests measure attention and the encoding/recall of memories. I did the test about 3 years ago. I wrote down all the different exercises afterwards, but naturally I can't find where I put that record! Here's a sampling though: Some tests involved recalling details from lists or a stories told by the tester. Others involved reciting words from vocabulary -- say, listing all the vegetables you can think of, one for each letter of the alphabet. There were tests for pattern recognition, and for choosing the next shape in a series. There were flashcards with sets of faces to try and memorize. The whole process took a few hours.
 
Nakamova said:
There seems to be a standard set of tests that are administered (at least in the U.S.), but it would definitely be tricky to do them in your non-native language. The tests measure attention and the encoding/recall of memories. I did the test about 3 years ago. I wrote down all the different exercises afterwards, but naturally I can't find where I put that record! Here's a sampling though: Some tests involved recalling details from lists or a stories told by the tester. Others involved reciting words from vocabulary -- say, listing all the vegetables you can think of, one for each letter of the alphabet. There were tests for pattern recognition, and for choosing the next shape in a series. There were flashcards with sets of faces to try and memorize. The whole process took a few hours.
Click to expand...
Hi Nakamova,

Once again, thanks for taking the trouble to reply to m post. I think you are right that these tests wouldn't work in a foreign language - it wouldn't really give an accurate set of results. I di, strangely enough, do a "face recognition"test online quite recently - something a friend sent out - and my results were way below average!!!!! -even though I felt as if I were doing quite well! As I siad, my biggest memory loss seems to be either visual or autobiographical - actual facts and general knowledge type information seem still to be reasonably well lodged in what brain cells I have left!!! Do you know if any of the tests you refer to could be found - and done - on line. Also what is it they are trying to find out. prove etc?? Thanks again. Cheers Maggie
 
Do you know if any of the tests you refer to could be found - and done - on line. Also what is it they are trying to find out. prove etc??
Click to expand...

The tests can show what areas of cognitive/memory function are problematic and which are fine. Depending on the results, the neuropsychiatrist can suggest tips and techniques to improve and/or work around any problem areas. In my case, the test sets a baseline, against which to measure any future cognitive changes (up or down). If, for example, I felt that a new medication was affecting my memory, I could take the test again and note any significant changes compared to the first test. This link provides a general description of the testing: http://emedicine.medscape.com/article/317596-overview

Online tests can't really substitute for the real thing. Keeping that in mind, you might find the links below of general interest:
http://www.aceonlineschools.com/10-...m/learning_memory/mem_games/memorygames1.html

And just searching for "free online memory tests" will bring up many links to explore...
 
Once again - thanks a lot. I'll have a look at the tags you've given me tomorrow - I'm really tired tonight - plaster casts on legs are not the most relaxing thing in the world!!
Maggie
 
i can't remember almost anything since before i got epilepsy coming up on 14 yrs i think see nothing from my childhood besides i played sports b/c my mom has videos.other than that nothing and when i try to thk about it i have a seizure so i just gave up on it wats the point even seen a psych to try and get it back my short term is bad but not as bad as long as someone reminds me a 100 times prolly a miture of epilepsy hitting my head and meds.
 
Hi there - thanks for your post - Like you my memory of the past is very veyr poor - since the medics found the right medication (Lamotrogine) for me and things are basically under control, I now am able to make new memories and generally they stay with me. I still occasionally have minor seizures in the early hours of the morning and, after one of those episodes, my memory -both short and long term- always a little bit worse My parents are sadly both dead and the worst bit is that I really can't remember them now!! I find that hard. Even when I see all the photos of them and anything in the past, it means nothing to me - I KNOW it is me in the photos but it could be a complete stranger as far as my memory is concerned!!
 
I have to say I'm in the same boat really ... I'm from the USA (living in Australia now) and I traveled all over the country when I was younger but I actually remember nothing about the trips ... I pretty much traveled from Arkansas (where I was born) to Canada and back but I remember none of it .... It's so frustrating to me bc I wonder how long these auras have been going on .... What damage has been done and what will be done in the future .... People laugh at me bc I forget everyday things like what something is called and it's usually in front of heaps of people .... I work at a security and ATM company under the Customer Service manger for the whole country and even though he hasn't said anthing I know he realizes I'm not what I used to be before the seizures :-(
 
Hi Everybody,

I am new to the forum too.
I have temporal lobe epilepsy, complex partial seizures, probably since 2005, but diagnozed in 2010, it took me some time to realize what was wrong with me. I used to think I was just over-tired, sleepy or probably had a migraine with auras. It was the memory issue that actually got me diagnozed, as migraine does not come with memory loss... Partial seizures are probably under-diagnozed anyway, because people don't always realise they have them. Btw my MRI and CT scans came out normal, just saying "something very mildly abnormal in the right temp lobe"...
So about the memory, mine is terrible. The long term memory is the worse, I can remember my childhood events well, this is when I did not have the epilesy. But for the last several years I can hardly remember anything. I am keeping a diary, coz I do not want to look always "stupid" to people, as I am not being able to remember events and names... It is very embarassing indeed, especially if you are trying to work!
 
Hi Alexandraog, welcome!

A diary is a great idea, not only for memory purposes, but also to help track how your brain is behaving...

Best,
Nakamova
 
AussieAng said:
I have to say I'm in the same boat really ... I'm from the USA (living in Australia now) and I traveled all over the country when I was younger but I actually remember nothing about the trips ... I pretty much traveled from Arkansas (where I was born) to Canada and back but I remember none of it .... It's so frustrating to me bc I wonder how long these auras have been going on .... What damage has been done and what will be done in the future .... People laugh at me bc I forget everyday things like what something is called and it's usually in front of heaps of people .... I work at a security and ATM company under the Customer Service manger for the whole country and even though he hasn't said anthing I know he realizes I'm not what I used to be before the seizures :-(
Click to expand...

Hi Aussie Ang,
On the subject of the type of memory loss that can affect us all, one of my weirdest "mixtures" is that from my first ever holiday (5 weeks) to the USA about 8 years ago - before the epilepsy began - I can give you the complete step by step itinerary from the moment we arrived in NYC to the moment we departed from San Francisco for Paris. However, I have absolutely no idea what any of the places/cities looked like or what I did and saw when we were there. I sometimes get tiny little "flashes" of memory about a place - a bit like a very quick part of a frame from a movie - but I can never "hold onto it" or expand on it.
 
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