Community Forum Archive

Memory loss?

Hello,
 
After skimming a few topics & their replies, am I correct in assuming others w/ epilepsy suffer from short or long-term memory loss?
 
Please forgive me if this is a question that's been asked repeatedly or is deemed 'stupid' =P  I have never talked to anyone that has had epilepsy before, & only found this community this evening =)
 
I think it goes w/out saying that I ask this question because I suffer from this.  I know my memory wasn't always this bad...but it has clearly gotten worse over the past several years.  Long-term memories, I need more reminders about an event or conversation; short-term, same thing...if I remember @ all.  I'll forget what I'm talking about while I'm doing the talking...altho 1 doctor deemed this as disassociative seizures, when I had previously placed it as a lack of interest (i.e. work conversation, hah).
 
Thanks,
 
Ache
 
**Edit - Answered my own question after peeking around a bit more.  I suppose there is some reassurance in knowing what my once infallible memory is being marred by...

Comments

RE: Memory loss?

Submitted by gsness on Fri, 2005-01-21 - 13:55
Hi Ache!Glad to see the other comments here answered your question! This is a great site, isn't it?Anyway, obviously you're not alone with this and others have the same problem... whatever that problem was... it seems to have slipped my mind....Anyway,Bright blessings and good to hear from you! Welcome aboard!gsness

RE: Memory loss?

Submitted by ConsiderThis on Sat, 2005-01-22 - 09:50

Hi Ache,

Because I'm not sure what answers you found, I'm going to mention that vitamin B12 which is a nerve health vitamin, helps a lot with memory. There are many studies that show it is deficient in people with Alzheimer's and with other dementia conditions.

One thing that's important to know, though, is that if you replace the B12 you are missing, it doesn't restore your ability to use your memory. I mean that after I was low on B12 for several years, and then I finally got replacement therapy, my memory improved, but it improved a LOT more once I began doing exercises... and they can be as easy as playing memory related games.

Vitamin B12 - sublingual methylcobalamin lozenges - have also helped me by providing a great reduction in pain. (Though I use the cyanocobalamin shots.) The methylcobalamin has been shown to be effective, and it's way easier to pop a lozenge under your tongue, than to give yourself a shot.  : )

www.health-boundaries-bite.com/Fingernails.html
     Your fingernails reflect your health --
     Learn what warning signs to look for --
                                Karen Kline

Hi Ache,

Because I'm not sure what answers you found, I'm going to mention that vitamin B12 which is a nerve health vitamin, helps a lot with memory. There are many studies that show it is deficient in people with Alzheimer's and with other dementia conditions.

One thing that's important to know, though, is that if you replace the B12 you are missing, it doesn't restore your ability to use your memory. I mean that after I was low on B12 for several years, and then I finally got replacement therapy, my memory improved, but it improved a LOT more once I began doing exercises... and they can be as easy as playing memory related games.

Vitamin B12 - sublingual methylcobalamin lozenges - have also helped me by providing a great reduction in pain. (Though I use the cyanocobalamin shots.) The methylcobalamin has been shown to be effective, and it's way easier to pop a lozenge under your tongue, than to give yourself a shot.  : )

www.health-boundaries-bite.com/Fingernails.html
     Your fingernails reflect your health --
     Learn what warning signs to look for --
                                Karen Kline

RE: Memory loss?

Submitted by Christine on Sat, 2005-01-22 - 15:25
Perhaps you have experienced "memory loss" in the same way that I understand it (with a diagnosis of Temporal Lobe Epilepsy or "TLE.") The "Hippocampus" in our brain is responsible for sorting and storing memories. With epilepsy however, the file folder is created but a lot of times there is nothing in it. To be more precise, you will remember going to an event but will not be able to remember anything that happened while you were there!A lot of the time, if someone else tells of things that happened it will trigger the memory and you will be able to recall more. May I suggest, that you start keeping a journal. It will help you as a reference source, and it will also help you to keep track of auras/seizures and any patterns that may become evident. Especially if you are a woman, you should be aware of seizure activity/mood changes surrounding your menstrual cycle (called "Catamenial Seizure Activity." May I also suggest that you sign up for daily updates on this site on your computer, you can learn a lot from others who suffer with the various nuances of Epilepsy. Finally, If you have any questions write! This site helps to inform us all!!

RE: Memory loss?

Submitted by Learner on Sat, 2005-01-22 - 22:47

Hi Ache,

I have been dealing with this issue in my girlfriend for a year and a half or so.  She recognizes taht the short term memory is not what it used to be and yet she does very little to work with it.  Here's a simple example of what I mean:

She is involved in many different things which is fine.  She misses regular appointments because she doesn't use the "recurring appointments" option on her computerized calender.  It's little things like this that she doesn't take advantage use to help her overcome the memory situation.  The result is that life is harder and more frustrating for her.

Another aspect of this is that she remembers conversations the way she wants to remember them which is almost always much worse than what was actually said in that conversation.  The result is that she is nearly always at odds with her family and close friends.

The point I'm trying to make here is that it is important to recognize that there is a memory issue to be dealt with.  You've done that so the next step is to find ways to deal with it.  You take charge of it.  Don't let it take charge of you.

Pocket PCs are fine tools as are Day Runners (those paper based organizers).

Another thing that helps us communicate is email itself and yahoo's messeging.  We have used both to convey important points that we want to be accurately remembered.

I hope this helps.

Learner

Hi Ache,

I have been dealing with this issue in my girlfriend for a year and a half or so.  She recognizes taht the short term memory is not what it used to be and yet she does very little to work with it.  Here's a simple example of what I mean:

She is involved in many different things which is fine.  She misses regular appointments because she doesn't use the "recurring appointments" option on her computerized calender.  It's little things like this that she doesn't take advantage use to help her overcome the memory situation.  The result is that life is harder and more frustrating for her.

Another aspect of this is that she remembers conversations the way she wants to remember them which is almost always much worse than what was actually said in that conversation.  The result is that she is nearly always at odds with her family and close friends.

The point I'm trying to make here is that it is important to recognize that there is a memory issue to be dealt with.  You've done that so the next step is to find ways to deal with it.  You take charge of it.  Don't let it take charge of you.

Pocket PCs are fine tools as are Day Runners (those paper based organizers).

Another thing that helps us communicate is email itself and yahoo's messeging.  We have used both to convey important points that we want to be accurately remembered.

I hope this helps.

Learner

RE: RE: Memory loss?

Submitted by Gretchen on Sun, 2005-01-23 - 03:13
Of course I can NOT remember this but there is a cute poem in a book I used to read to my children, I think by Dr. Suess, that went something like - I forgot to remember I had to remember that I was to remember....and of course I can't remember anymore than that - and I'm sure my memory of that isn't a quote. It's a "get the gist of" type memoroy of mine only. But it's often how I feel. I often can not remember that I was supposed to remember to constantly check the calendar so I will remember when I have a doctor's appointment, for instance. And when I do remember to remember to check the calendar, I do check the calendar,and after I've read the appointment date and time, I forget!!!!! ARGH!My memory is ATROCIOUS! If I write too long of a sentence I switch topics, often, from beginning to end of the blasted sentence. I have to keep my sentences shorter then I currently am. If I don't paragraph well, which I don't tend to do, I'll start out the paragraph talking about one topic and by the end of the paragraph I'm on a totally different topic as my memory hops around which I've been told is another kind of memory loss called "topic hopping". Chronically forgetting the original topic, changing it through association from the topic before until it's morphed into a totally different subject. So, one of my goals right now, as of yesterday in fact because once again I'm working with a speech therapist to try and help me with my blasted memory is to paragraph better. Make spoken and verbal sentences shorter. This does help BTW, at least for me. I'll be typing something and...it's like the bottom dropped out at times though even in short sentences. Totally loose what I was saying midsentence. If someone interrupts me when I'm talking? HORRORS! Whatever I was talking about is often just gone. I have learned though to ask people to "cue" me, what was I talking about I'll ask? Often that helps. I'll ask them to give me "key" words and often that does help. Sometimes tho that topic memory is dead in the water. I have two pre-existing situations that add to the problem. I had meningitis (didn't cause my E tho) but afterwards I had some brain damage which resulted in "dysnomia" or inability or difficulty in remembering the names of persons, places, and things. I worked with a speech thereapist for 6 months on memory retrieval. She was terrific,(if I remember right) and gave me a lot of aids to remembering or substituting words but keeping on topic. Asking people to "cue" me with key words I've mentioned and that helps me a lot. Not getting uptight and if I am? Quit trying. Sometimes it comes back later. Visualization while I'm talking helps keep me on topic so my bottom doesn't drop out. She helped me find subsitute "Key" words that tend to stimulate my memory. Such as if I am talking about a car, visualize "car", but if suddenly I can't remember the word "car", and if I've been visualizing, I can think of other words such as "auto" and often I can then get back to my topic that way too. I'm also bilingual. I know, particularly if I'm actively sz'ing or in post ictal I'll be thinking in my language of birth, trying to speak in English. All of that combined? My memory shoots craps! Plus my syntax, which is at most times different than most people who were raised with English as their only language, (LOL - just lost where I was) gets progressively different than others......dang, see? I can't believe it. Right here? An example of my bottom dropped out. I can't remember what my thought was right in the middle of a sentence. Oh well. I'll leave that in as Exhibit A.So much for excuses! When I developed full blown E, now I know I had it it in a milder form all of my life, I was placed on Dilantin, a known short term memory robber, but I didn't know that it was effecting me. I read it was a potential, didn't think I was experiencing it. When I was first aware of it the frustration of this one experience for me was very frightening, and I couldn't understand why it was occurring. In my occupation I had to pass several qualifying verbal and corresponding skill tests each year. I had done that for years, always passing with high scores. I should pass with high scores after taking the same tests year and year. Once I was on Dilantin? I flunked the written test part of all these tests. I was given a second chance. I didn't have enough time, in the time allotted to finish any of the tests, and failed them all twice. What I found was the questions were multiple choice. Once I had read the long question asked, which were all scenarios with several components, read all the multiple choice potential answers? I could not remember the question's components. I had to go back and re-read every single test question so often, I ran out of time, failed the exams. It worried the heck out of me. I'd just been diagnosed. Was actually controlled at that time for 5 months and working. But my usual razor sharp memory at work - became more and more of a problem. Work I had done for years smoothly? No longer went smoothly. My pockets bulged with notes I constantly had to write, review, forget, review again. I was relieved to hear it was part of my epilepsy and AEDs. I really thought - I'm getting some sort of Alzheimers. One man's definition of his memory deficits from this defined for me the way I have felt. He said his mind is like a filing cabinet with all of the information stored but all the files were taken out of the cabinet, thrown up in the air and became scattered about randomly. The information is still there, it's very difficult to retrieve. I think this problem is worsening for me which is now stated could happen on dilantin and after speaking with my doctor about it she decided to have me evaluated by a speech therapist, which was done, and once again I'm going back into speech therapist which I recommend to anyone. I got a tremendous amount of help when I first got dysnomia and maybe this new person can give me some aids also. I don't know all of the reasons why I have memory problems, there are a lot of reasons why I could have them including PI, sz's, epilepsy in general, TLEs, fatigue, Dilantin, dysnomia, language conflicts. I guess too it doesn't matter, it's there, therefore it's a problem. What does concern me though is that I've had many severe oxygen deprivation sz's too, a severe head injury, two concussions so far, so who knows about brain damage vs memory. I can do nothing about any of those things but I hate the thought of "brain damage". I already HAD some brain damage from meningitis. It's a problem tho for whatever reason. The nuttiest thing of all the things I can't EVER remember? The day of the week. I look, or I ask, I find out, I forget. I'm making a very hard effort to overcome this and I'm making baby step gains, on some days. I repeat that sequence some days multiple times but still? I can never remember what day of the week it is. I haven't wanted to resort to posting a BIG sign each day what the day is, but I think I've proven the theory - I just can't remember. I've missed appointments of all kinds, don't get to the one night the library is open late, so many things I miss out on because I can't remember the day of the week. Today is Saturday meaning my husband gets off one hour early every single Saturday? I thought it was Thursday. I called my doctor at 2:00. Not in. Why for? I needed refills. Checked the calendar AGAIN, saw it is SATURDAY, forgot AGAIN. My husband came home an hour early later in the day. I thought maybe he'd gotten sick, was fired, whatza deal? It's SATURDAY! Forgot again. But I have improved. At least I do now remember the month about 75% of the time. I haven't moved out of December totally yet, but I'm darned close! I did remember the year all the time until time had the audacity to change it to a new year! I'm still stuck in 2004. I have calendars of all kinds all over the house. It helps at the moment, then I forget. I'd love to know of all things why I can not ever remember the day of the week. It's been a real functional problem, I'm chronically missing appointments unless my husband reminds me constantly the whole day, then I find myself irritated at him, and shouldn't I know. I'm currently on home health care. They used to leave me cards when they were visiting next? Now they call me on the day they're visiting and then again right before they come over! My doctor's office calls me to remind me it is THE day I have an appointment and then again, 1/2 hour BEFORE my appt. Am I embarrassed? Nah, I got over that long ago. I'm thankful people are patient. Yep I'm giving it up. I need to put up big signs where I'll see it daily, what day of the week it is. But then I'll probably forget to change the signs too!I sought therapy awhile back. I saw a social worker for that short term therapy but she said I had to see the psychiatrist for "medicine management", all patients did for some reason, which I never got because he wasn't prescribing anything. But we had a nice 50 minute chat, which I had to pay for still it was a clinic requirement. Then I got his notes to take to a new neurologist and he put down I had a PERSONALITY DISORDER because I "claimed" I couldn't remember the day of the week andsomething about I didn't seem to know the day of the week I was in his office - as if I was pulling his leg? I really don't know his thinking. I explained I'd had this problem since being treated for epilepsy. He seemed to agree at that time, yes memory can be a problem. Then wrote that. That is not only insulting, it is an inaccurate diagnosis because he didn't have enough data to diagnose, and as one of my daughters, who is a therapist said, he can not make a "personality disorder" diagnosis in a 50 minute chat. That is now on my "permanent records". I wrote a letter to put on top of his in that file to rebutt his "diagnosis" but this was a psychiatrist? A doctor "of the mind"? Made me loose yet again faith in who I trust medically.If people rush me, try to help me fill in the blanks, jumping in too fast to help? It gets worse so I have no problem with asking them to wait, give me a chance. Often I'll not be able to remember something at all. Long term as well as short. Give it up. Sometimes, at some other time often out of the blue in the middle of nothing pertaining to that memory like popcorn popping up right in the middle of another thought unrelated, that lost memory pops up, out of context. This happens a lot to me after having a t/c.After saying all of that? I DETEST the memory loss thing at times and it has caused me losses. People not educated in epilepsy I've found think epilepsy is only seizures. But it's a lot of different symptoms that cause this syndrome. Memory loss or difficulties there of, is a fact of life for many of us. I wish I knew what percentage of epileptics have this problem. I wish I could remember what it was like years ago when I had a memory like a steel trap. At least I think I remember I did. I can't remember if I did, when that was though. Or maybe I'm remembering wrong and never had a good memory. Who knows? (smile)

RE: Memory loss?

Submitted by mjluvzjc on Sun, 2005-01-23 - 09:34
hey,ive got epilepsy n this is the first time ive talked to sum1 wi it to !! but i no ow u feel bout the memory loss i get it all the time esp in lessons at skool so ive alwayz got a helper round me which is annoying but helpfull! and wen im writing a letter or anything i alwayz miss words or letters out n wen im txtin 2 itz really annoying :( i havnt got no answers for ya but all im sayin is i no ow ya feel i need sum answers 2, 2 help me aswell as u! all i can say which has help me mor is 2 take it slow and dont rush dats wot ive done n its made it betta but i realli need it 3 go away !!! luvya ldz fran xxxxxxx

RE: Memory loss?

Submitted by pongosmommy on Sun, 2005-01-23 - 17:15
Oh yeah,I have big time memory loss. There is a Huge portion of my childhood missing. The child hood memory loss we can attribute to a traumatic event that is blocking me from getting to any files past a certain time in my life.My family made me promise that I will see the Psychiatrist to unlock the file. Hypnosis the whole deal. I know what happened and what locked it...and I am terrified of the pain that it will unlock...but I promissed my daughter I will do it. It may send me into an Institution but at least I will be free of the blockage. And I will NOT break a promise to Her.Now as for the Short term memory loss now that is a whole different problem. I suffer from CRS...Can't remember STuff. I really can't...my Husband took the checkbook away from me. Says the math major can't balance the checkbook anymore. I can't remember if I paid a bill or not. I thought I paid the phone bill, checked it off, turned out I had not paid it inmore than 2 months. OOPs. Missed Doctor Appts. Forgot that I made plans with one friend and made plans with another the same day...good thing they check with each other first. I forget the meaning of words. So yeah, do not feel alone...My husband just says I am having more platnum moments all the time. He can't say dumb blond. My daughter gets real mad( she may be a redhead but she is a natural blond). They(my family) hopes when my sz's are controlled that I will regain some of my former abilities.We will see.Dayna

RE: RE: Memory loss?

Submitted by Gretchen on Mon, 2005-01-24 - 05:59
PongosM? I do think we are following each other around the board symptomatically! I had 11 children, during my "memory days". That meant 22 little curious hands on some things that I didn't want touched. Usually these things were small such as jewelry, a watch, money, a button I was surely at some point going to get sewn back on. So I'd put it up or "hide" it. That worked. Then I get epilepsy.My children are now grown, the hiding theory still exists. The problem is? I can NEVER remember where I hide things. OR worse, I hide things post ictal! THE worst thing so far I've done is to cash out my disability check. I do remember I was laying down and there was a knock at the door. I had just met a woman we know stole some things from us. I was laying down, PI, had a headache from an early AM sz. I heard that knocking, thought it might be her, and hippity hopped to my purse, took out my cash FOR A MONTH, and hid it. We were moving. That money was to pay a large part for the damage deposit. Without it we were going nowhere. Days later? We couldn't find it. We do NOT make a lot of money. Every cent is precious. I'm also not an imaginative hider so at first we weren't worried. In fact in trying to find my just cashed out disability check we found $20 I hid under the mattress, who knows when. $10 in the "sugar" bowl, that has a very obviously false botom made by one of my children once in school. $10 in a library book we'd both already read. $50 frozen in ice in the freezer. I was getting this wicked feeling we were somehow getting ahead while we still couldn't find my disability money. Finally after hours and hours? We ran out of ideas. Had checked every conceivable place many times. Didn't know what to do. We were going to have to give up a very nice place to live. I was sick about it. I went back to bed, awash with fatigue and worry. My husband left to run an errand and POP - I remembered where I hid it and if I hadn't had rememered? We would have NEVER found it. In a bedroom we never used I had scampered in there I remembered suddenly when I heard that knock on the door. Pulled up the carpet tacking in a closet, put the money under the carpet, tacked it back down! Totally forgot I'd done that. It's still a small miracle to me it popped up in my mind I did remember. Now I keep forgetting I did that, plus all the other money we found I had "hidden", and forgot, and get furious when my husband thinks it best I have no more than $5 on me and I forget all this hiding junk and feel, and complain to friends (shame on me) that my husband never leaves me any money - like I'm a dang child - darn't! BUT I am a PIH - post ictal hider. Surely, the very worst kind. YIKES!

RE: RE: RE: Memory loss?

Submitted by pongosmommy on Tue, 2005-01-25 - 14:56
LOL oh Gretchen,I am still looking for a necklace and a Ring that I hid 2 years ago.Dayna

RE: Memory loss?

Submitted by jennamay on Mon, 2005-01-24 - 09:55

Hi Ache,

You may find some of these links helpful in understanding memory loss as it relates to epilepsy:

http://www.epilepsy.com/articles/ar_1063660975.html

http://www.epilepsy.com/articles/ar_1063659813.html

http://www.epilepsy.com/articles/ar_1063660416.html

http://www.epilepsy.com/articles/ar_1063660566.html

You may also want to consider obtaining memory devices designed to help you remember such things as taking your medication:

http://www.epilepsy.com/epilepsy/devices_links.html

 

Epilepsy.com Editor

Hi Ache,

You may find some of these links helpful in understanding memory loss as it relates to epilepsy:

http://www.epilepsy.com/articles/ar_1063660975.html

http://www.epilepsy.com/articles/ar_1063659813.html

http://www.epilepsy.com/articles/ar_1063660416.html

http://www.epilepsy.com/articles/ar_1063660566.html

You may also want to consider obtaining memory devices designed to help you remember such things as taking your medication:

http://www.epilepsy.com/epilepsy/devices_links.html

 

Epilepsy.com Editor

RE: Memory loss?

Submitted by cricket2674 on Tue, 2005-01-25 - 11:35

This is the first time I have participated in this ...is it called a chat room?. They say as you get older that memory is the second thing to go. I can't remember the first.

I have partial complex seizures and definitely have short term memory trouble. I haven't mentioned anything to my neurologist because I thought  it was menopause related. I can remember who sang Calendar Girl 45 years ago but have difficulty remembering the day of the week, and the names of my grandchildren. Information usually comes back to me later so I try to be patient with myself. I'm about to undergo another med. change (currently on dilantin and lamictal) and would like to know which meds. don't have a negative effect on memory. Any ideas?

Thank you so, so much to everyone who is participating in this. I can't tell you how much of a relief it is to know that I'm not just imagining these additional "symptoms" of epilepsy if for no other reason than to give me the correct words or way to describe some of the weirdness that accompanies my seizures in the pre and postictal stage.

I'll be back to visit often.

This is the first time I have participated in this ...is it called a chat room?. They say as you get older that memory is the second thing to go. I can't remember the first.

I have partial complex seizures and definitely have short term memory trouble. I haven't mentioned anything to my neurologist because I thought  it was menopause related. I can remember who sang Calendar Girl 45 years ago but have difficulty remembering the day of the week, and the names of my grandchildren. Information usually comes back to me later so I try to be patient with myself. I'm about to undergo another med. change (currently on dilantin and lamictal) and would like to know which meds. don't have a negative effect on memory. Any ideas?

Thank you so, so much to everyone who is participating in this. I can't tell you how much of a relief it is to know that I'm not just imagining these additional "symptoms" of epilepsy if for no other reason than to give me the correct words or way to describe some of the weirdness that accompanies my seizures in the pre and postictal stage.

I'll be back to visit often.

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