Memory problems!!!!!!!

[epileric]

My family were pretty good & extremely patient with my bad memory.

Growing up I used to get frustrated because my mom would remind me of things at least 4 or 5 times. I thought it was her that I inherited my bad memory from until one day she said to me "Remember when I would remind you of things 4 or 5 times? Well, I really reminded you 7 or 8 times.

 

[seizingbeauty]

This place never ceases to amaze me! Thanks everyone, once again I've been reminded that I am not a total freak of nature! Well maybe I am but not cuz of this :roflmao:
I don't have much contact from people in my life from before the age of 18. Unless the memory is something overpowering, I've lost most of my childhood. Most of it I know I'm glad is gone but I'm sure there are somethings that if I knew about I'd miss. I work hard at keeping the memories that are important to me. I'm a bit of a pack rat cuz I find that having an object from an experiance helps. My bf is really understanding, he helps by talking through the memories I want to keep. We re-live them over and over, I'm sure for some people that would drive them nuts, but his patience is amazing. Even as I'm writing this I'm trying not to cry. I'm so afraid that I'll lose something important, and not even realize its gone.

But on a brighter note, I can reread the same book 15 times and enjoy it as if it was new.

 

[marion]

This thread is very helpful. I had nocturnal seizures for four years and didn't know it, but I did know that something was messing with my long term memory. Like when I said I never saw a particular movie, and my friend answered saying "don't you remember, we saw it a few months ago together." Or when an old friend who lives far away came here and we spent some time together, and now I don't remember it at all. Big stuff. I feel like I've lost 4 years of my life. Now that my seizures seem to be under control, maybe the memory will get better. But I take comfort in knowing from these posts that it can be from the seizures, and maybe not dementia.

 

[Cerindipiti]

OMG I love u all!!!!!hahA i can totally watch the same tv show over n over like its new! Y ou said something else awesome but i cant remember. lol.

 

[gigi]

yep - i get that response consistently. The, "don't you remember?" No, no and no. My husband likes to watch the same movies over and over, fortunately for me!! :roflmao:

 

[Elaine H]

Hi Hun

I am so glad that what I said about my experiences, have helped you to know that there are others out there that have the same things happen to them , and find it equally frustrating that society, and to some extent, friends and family, just can't understand us, it is a big ask though isn't it? I mean, how the Hell do we describe an aura, any sort of epileptic activity to someone who has no idea whatsoever of what we are talking about. People also just cannot believe it when we say, "Have I been here before?" or like me "Have we been in that restaurant darling, oh right, when was that, and did we have a good time, was the food good?

" The example I always give is that, I went to see The Eagles at Wembly Stadium in 1996, I had a seizure on the way out and hit my head on a sink, but I can honestly say, hand on heart, that I have absolutely no recollection of that gig whatsoever, going there, being there, coming back, or who I went with, let alone if I enjoyed myself, I get really angry and frustrated trying to explain to folk how terrifying it is, desperately trying to pull memorys from the dark black reccess's of my mind ( I have just started to cry...........) It's just that I know that you will be able to relate to this, we really should talk more, write back and maybe we could catch up on Facebook?

I have completey lost what I was replying to after my little snotty session, I've dabbed my eyes and blown my nose and I'm ok now. I hope you are ok, and that you get a lot of comfort from the guys on here, you are among friends, and we all appreciate how buggered up our brains are!! It's only us that are allowed to though eh? Ha Ha!!

Cheers
Lainey x ( with a big red nose!!!)

 

[Cint]

{{HUGS}} to you Lainey, and Thanks for bringing this subject to attention so we can all relate and talk, laugh and cry about it together. We're the only ones who know what it's like to lose part of our lives, due to this ugly brain disorder, epilepsy. And for those on the outside to have the audacity to say, "I know" when referring to memory loss we're talking about. If they really knew where we're coming from, maybe they wouldn't be so quick to talk.

 

[flinnigan]

I'm so sorry Lainey for what your going through. My hubby has pissed me off a few times. One hurtful thing he did shortly after my surgery was to put a big ugly white erase board up in the kitchen where I'd have to see it all day and put things I needed to do on it. This past week I got to slam him with it as he forgets as many things as I do sometimes. Now I can use it against the kids if they forget to put something important that they want oh well they won't get it.

I'm sure this is no different than someone who has cancer or any other disease. Until it effects you you can't truly understand.

I was surprised how well I did on my Neuro Psych exam. I scored even higher on the WADA 15 out of 15 on the healthy side and 14 out of 15 on the side to be operated. My theory is that since I'd had the angioma y whole life the brain had compensated for it long ago.

Oddly enough I've had some very old memories come back since surgery not sure what that means. As for my day to day it seems about the same.

Take care sweetie and go ahead and cry all you want, you've earned it.

P.S. hows the book going?

 

[Chris515]

Thanks Elaine, for this thread... it's good for all of us to talk about these problems.

Cint - very well put. Just what I was thinking.

I have a slightly different twist on this issue - I've had situations with my wife where I am totally sure that I have told her something. But apparently I didn't.

It's kind of the opposite, but maybe related? I clearly remember doing something but I didn't do it? Anyone experience this?


There have been so many times where people tell me something that happened in my life that I have no recollection of at all... it really sucks sometimes.

 

[marion]

Same with me Chris515, people are always mentioning something that happened, or something we did together, or someplace we both were, or even something I told them, and I have no memory of it at all. It's gotten so when this happens, I automatically just sort of nod my head and smile, and don't say anything. And then they usually just go on and either say more about it, which I still don't remember, or go on to something else. I know it's not honest, but I just don't want to deal with it anymore, so I "fool" people. It's become a disturbing part of my life. I love this thread

 

[flinnigan]

Chris515

I do that and have for years I think its so much stranger than not remembering something you did. It really sucks when someone misses something because you thought you told them.

 

[Cetacean]

Memory: Short term, names, faces, events; I have serious problems with these. (TLE - Complex partial seizures, diagnosed by EEG in 2006, apparently due to asphyxia event at age five.)

I actually attempted a career at a Japanese corporation in Tokyo in the early nineties. The Japanese place an awful high value on remembering names and faces. To fail to remember a business contact is to humiliate by the suggestion he or she is not worthy of memory. That causes "loss of face" and that causes problems. The fact that mine was a high profile position in which I was introduced to almost everyone if only because I was so conspicuously one of two non-Japanese working in the large open office layout of the Overseas Division. Suffice to say that I had to blow that pop stand after five years of that (and other symptoms not diagnosed as epilepsy until 2006), although I/they had made a career path for me producing their Web presence, despite everything.

I long thought it was due to my (medically approved since 1998) consumption of marijuana, but whereas my memory issues have been a constant in my life even in adolescence, cannabis has been inconstant, e.g. Japan is not exactly Amsterdam. I've collected a lot of research on cannabis and epilepsy that has reassured my very skeptical doctor who approves my use. I'll share if there is interest.

You people are very encouraging. It's good not to feel alone in this circumstance. Fact is, anywhere you go people are at least a little insulted if you don't remember them. Memory is fundamental to social function. There are precious few jobs around where one doesn't need to rely upon it.

op:

 

[annietn41]

I have memory problems but not sure if that is due to Lamictal or the E. I see people at the grocery store and they come up to me and say Rita, how are you doing?? on and on and I'm like saying to myself I have no idea who you are. I don't tell them that of course - LOL. My husband will go somewhere and when he gets home I ask him where he's been and he tells me that he told me when I don't remember. I can't remember names of my aunts, cousins - who I don't see a lot. It is scary isn't it? I wonder how much I don't remember and just don't know it!! LOL

Rita

 

[Cerindipiti]

This place has too helped me soo much. I feel like I am learning so much while being comforted that my oddities are sort of normal, for us.... lol. There is so much I want to say to everyone but alas...um...gosh ok shortly puttin' (I have my own language by the way)... I have a white baord. it helps. Also, Chris that happens to me all the time...ok not all the time. When I was younger my family and I went on a 2 week vacation to California. I don't remember anything about the trip. I don't know what we did or where we went. The only thing I remember is that I was pissed the whole time (granted I was also like 13..lol..you know where that's leading...) The only thing I know is that years later my family and I sat down at a Chinese restaurant and they spent 2 hours telling me what we did on this vacation that I was on.
You alll are the sweetest and I appreciate so much hearing about everyone's experiences. I was wondering what kind of seizures do you all have?

 

[flinnigan]

I had absence as a child then simple partials through my teens. They changed to complex partials 2 years ago thats when I finally got diagnosed. No one believed me before that. It took having one in front of a Dr. during a regular check up. I had surgery in June and haven't had one since. Just started having my old memory issues come back recently. I think its from getting back into the world and getting over whelmed again. I'm going to have to get better coping skills.

 

[McGill]

I've had absence, tonic-clonic and more recently complex-partial seizures. The complex-partial seizures started in puberty and on occasion I still have the odd absence seizure and I'm not aware of it.

I've also had my Rx changed several times b/c of tolerance to the Rx or allergic reactions to them.

 

[Cerindipiti]

Ok. Yeah I have been diagnosed with Partial Complex of the Left Temporal Lobe. Like I said I'm 30 and was diagnosed 6 months ago. But I've had seizures my whole life. I usually have anywhere between 5 and 30 "invisible" seizures a day. They have me on Dilantin but it doesn't seem to be helping. It does but it doesn't. I don't know. Only at HUGE levels was it seeming like I could really keeps thoughts together. But my neurologist had my levels taken and it was 37.5 lol.

 

[Cetacean]

Ok. Yeah I have been diagnosed with Partial Complex of the Left Temporal Lobe. Like I said I'm 30 and was diagnosed 6 months ago. But I've had seizures my whole life. I usually have anywhere between 5 and 30 "invisible" seizures a day. They have me on Dilantin but it doesn't seem to be helping. It does but it doesn't. I don't know. Only at HUGE levels was it seeming like I could really keeps thoughts together. But my neurologist had my levels taken and it was 37.5 lol.

Your story might be mine with different meds, and a much different age.

Didn't get my LTLE diagnosed until age 45, in 2006. Enjoy that fifteen years! Hope you get that dragon under control!

op:

 

[McGill]

Your story might be mine with different meds, and a much different age.

Didn't get my LTLE diagnosed until age 45, in 2006. Enjoy that fifteen years! Hope you get that dragon under control!

op:

Mine wasn't properly diagnosed until I was in my mid-30's in 1986. I'm now 60, so that gives just a bit of an idea how diverse our situations are.

Re: dilantin: please check for the length of time you've been on dilantin b/c there are irreversible side effects if you've been on it for a long period of time. I believe that it's mentioned on this site somewhere. Just a "heads up"!!

 

[alivenwell]

Sometimes I run through the alphabet to find that 'connection' of something I'm trying to remember. I look for the first letter or first sound of a specific word or name.

There's a humorous side to this. We can forget some of the trauma and discrimination and start each day with a fresher perspective.

I highly recommend the movie 'Overboard' about somebody with huge memory issues.