Memory problems!!!!!!!

[Chatter-box]

What a thread! This cuts deep for me. I just cover it up and try not to think about all I've lost. I have almost no childhood memories, none of my children's births or their childhoods or even what they looked like at babies. It is all just gone. It is a good thing everyone else is sleeping in because I am crying, it hurts so much. Like you guys, I fake it too. I ask people to spell their names to cover not remembering them and make generic comments when the family "remembers", but it is all just gone for me and I don't want them to know. I feel like I hve only the present and no past at all. God this hurts. On a lighter note that is frustrating but not painful (and is what I ment to write before I got started) is my word-finding problem. My family loves to laugh when I confuse words, like telling my daughter to put her socks in the toilet instead of the hamper or of needing to describe something because I can't find the right word, like asking someone to bring me that white stuff you put on cereal (milk). I have learning disabilities and always put that part of this memory stuff off on that. And you can see that is really humerous sometimes, too. Recently I've found another frustration, though. I print instead of cursive writing (another LD thing) and when I have to write a check and have to write out the words (two dollars and fourty five cents) I can't remember how to form the cursive letters. I know what they should look like but I have to actually and carefully think my way through every movement of the pen to make my hand draw the letter. It just dosen't come naturally like it used to. Am I going bonkers? :loco: OK, guys. I'm off the crying past memory loss thing. Tears gone, at least for now. I guess if you have to live in the present only, you might as well have some fun. Fun in the past isn't near as much fun as fun in the present, right? I may not have a past but I have a present and a future and it is almost Christmas and Santa's on his way. Got to get busy! Happy Christmas, guys. Thanks for your friendship.:xmas:

 

[alivenwell]

I've heard many many of my childhood stories...thousands of times. It's hard for me to decipher what I remembered from other people's descriptions. I suppose epilepsy has left a major impact on other people around me.

 

[Aubrey]

Oh I am crying along with all of you. My memory problems are not to the degree as some, but they are still a problem, though I didn't know how much of a problem they would be. I applied to and was accepted to a rather rigorous post-undergrad program. I am one term in and doing, to put it delicately, less well than I had hoped. Not only that, I now have large outstanding loans. I walk out of the lecture and I have forgotten chunks of what I have been told. I return to class and I have forgotten things that I have read and understood, which has done wonders for my self-esteem. Where speaking in class is an integral part of the learning experience, this is big problem. My mother, who I thought would understand, instead is terribly angry with me. She thinks of me as intelligent, so her only explanation is that I didn't try, which she deeply resents because it is a unique opportunity that I have been given. At first my husband would understand one minute and be furious with me the next. Now at least he is trying to understand. If I had known I really would not have attempted this, but I didn't know the extent of my inability to retain information. It is a nasty surprise when the people you think will understand assume the worst.

 

[Mike]

Nerofeedback has made my memory so good. Im a lector at mass and after Ive looked at the readings a few times I can do the readings and not have to look down so much. Before the nerofeedback treatments my memory wasnt so good. Ive had alot of nerofeedback treatments over the past 11 years.

 

[Chatter-box]

Aubrey, I've been there! I am dyslexic and one of the first things that I did was to tape all the lectures. But if you tape an hour long lecture, you have to listen to an hour long lecture! Not the perfect idea. If you haven't already, see if you qualify as having a learning disability. Then your teachers have to provide "reasonable accomodation" which might include the right to tape lectures or extra time on tests or even untimed tests. I've had all of these, as needed. I've also had access to a computer for all written work with a spell checker (now, OK you guys, no teasing about my still crazy spelling!) and a calculator. All of these can help but it is still rough going for LD students. Having to repeat a test or a class to pass is rough on the ego but if you keep on you can get your degree like so many of us have. One thing you'll find when you get out of school and into a real job is that most of those classes were a waste of time and money, anyway. They are just a hoop to jump through, a money maker for the university. After all, how many times have you needed that one term of beginner Norwegian (foreign language), bowling (sports) or pottery making (fine arts)! But even if the "real" courses are the tough ones, keep going and use all the accomodations you need to get through. You'll get your degree in the end and it is worth it. :twocents:

 

[Mike]

Yea Man! I have to agree, never give up or in to these little challenges that we have to go through. Im sure you can handle it or you wouldnt be here looking for answers. Our struggles make us strong. Every day is another chance to grow in so many ways. Every day is our chance to make it better for someone else.

 

[kimberlymeg]

comfort

I wrote this recently to my family in my journal. Its a letter to them incase of an emergency but my mom has already read it. She tries hard to understand what I'm going through but no one can ever really understand until they are in your shoes. Here it goes:

"Dear Family,
If someone looked at me they wouldn't know there is something deeply wrong. My problem is not easily seen by people who do not know me. My mind. My last treatment cycle made me loose all of my hair and as a young girl its such a big part of your identity. There are moments, glitches, when I can't remember my name or where I am. I use to question after those moments "Where was my soul when I forgot everything? Because that person lying on the floor was not me. When I forgot how to move my own legs..." BUT, those things don't make you who you are: your name, your location, knowing how to walk or tie your shoes... I still knew who I loved (even if I didn't know their name), things I feared, and that there was something deep inside of me - something holding me together during those moments. There are some hours of my life that are completely forgotten no matter how much I try to remember. But, my Father (God) must have though I didn't need to. I think they would be too painful and terrifying to remember. My brain doesn't make me who I am; my heart works even when my mind won't. My heart is where He is and that is who makes me who I am. If there is ever a day my mind doesn't return, remember that my heart is still beating. I still love you and the greatest gift I could ever me given is still inside."

It gets quite spiritual because my faith is the biggest part of my life. I hope maybe the letter helped if you have ever had those same questions. Coming to those realizations comforted me a lot and I hope it can comfort you too.

Some helpful tips: Keeping an extremely detailed planner helps. I'm constantly putting reminders set to go off on my cell phone. I like to keep a lot of photographs around too. Me seeing myself in pictures with people that I see a lot helps. I don't know if this could help since I'm in college but I've learned that walking around while I'm memorizing things for tests helps me to remember better. I don't know if its the movement or what but it works

 

[kimberlymeg]

Chatter-box, I have felt the same way before ... I think that is why I love making scrapbooks and keeping so many pictures around as well as making a lot of home videos. Those reminders almost convince me that I remember those times. Most importantly, those reminders help you see that you have friends and family that love you in the past and present

 

[Mike]

Wow, Thats deep!!! My faith has got me through several brain surgerys, open heart surgery and so many other things.

 

[flinnigan]

Beautifully written Kimberly.

 

[Aubrey]

Thank you Chatter-box. I didn't realize until I returned to get more-than-just-a-4-year degree that I had so many difficulties. They weren't apparent in undergrad. The school officials have been pretty cool. This term was a fiasco though. I didn't know I would need to ask for help. I probably will be allowed to take longer on finals next time. The professors will probably not go for taping the classes. (They have said as much though not directly to me). Only prob is, there is a big test at the end of three years on the whole mess that I will have to pass if I want to get a job. What was I thinking?:egg:
Oh well, now I make the best of it

 

[foreverdark]

I forget so many things and have yet to honestly remember some stuff. I forget my Daughters names, I'll say: "UH, uh, um, you!" and they will be like: "*NAME*." all nonchalantly. They are so used to it. The other day I was eating something, and I didn't remember getting up to get it. I've been on the phone with someone and asked who called who.

It sucks!! I've got our 6yr old to help me remember if I took my morning meds. I take em when she takes hers. I have to ask my wife, constantly, when signing papers, "Cursive or normal?" EVERY time. It's like the knowledge is there, right there next to the making cookies last night memory, but it is an invisible box. This is the scariest. I've looked at one of our daughters before and it took nearly a full two minutes to even remember who she was. It doesn't get THAT bad much, hardly ever, but it has. I guess the weirdest is forgetting my own age.

Anyone figure out a cure, let me know. The girls are getting annoyed helping me remember

 

[Aubrey]

My memory is not as bad as some, I guess. That sure sounds rough, foreverdark. I sure feel what you are saying about the knowledge being there, but in a box, if I understand you correctly. You know you have sufficient comprehension, you are intelligent enough, but when you try to recall the information, it is like you are just on the edge of being able to retrieve it, but it won't come. Maybe if you think hard enough it might, but it doesn't. I suppose I don't forget my kids name anymore than your average parent, after all that's every parent that does that. But having to ask your spouse over and over again how to do the same simple tasks. I know how frustrating it is. Sometimes I just stare at my husband because I know I have asked him the same thing many times before and I just hate the thought of asking him again, and the indescribable look he gets briefly, maybe exasperation, before he answers. At school most of the term I would wander around trying to find my classes. I guess I should be grateful that I could remember which class belonged to room 135 and which belonged to 138. Unfortunately the classes are the same shape and in the same area and I still don't know which is the best way to go to get to one versus the other. I just wander around until I see the one that looks right inside or until I see people I recognize. I guess I should be grateful for that to - that I recognize any of them. Luckily it is a small building. Also, there was a class that was once a week and the last class of the day. More than once I would show up late because I would forget to go. Sometimes I wouldn't remember where it was. And if my usual ride couldn't pick me up, trying to tell them where to get me was nearly impossible.

Okay. What possibly helps? Does anyone on here think that any supplements help? I have heard B-complex strengthens the memory, and for many it helps control their epilepsy. For the odd person, such as myself, more than 10mg of B6 a day is a trigger. Megadoses of Vitamin D are also supposed to help the mind. It can also be a trigger. As I mentioned, I do not have the most affected memory, though it is enough to handicap me in something I was fairly confident that I could do. This may or may not play a part, but I am taking complete Vitamin E and Coenzyme Q10. My partials lessened immediately when I started taking the CoQ10. I am also thinking that memory games done on a regular basis might help. It is hard for me to tell if what I am doing is making an improvement because I am increasing my medication at the same time. I am terrified of going back to school on Friday.

Let's all share what things we have heard or tried that help or have tried that wasted our time and money and share our misery stories as well.
Thanks.

 

[Mike]

I think that nerofeedback would help your memory become better than ever before.

 

[Mike]

I didnt mention the memory games, there great! Start small with letters or numbers. Your A,B,s or addition and subtraction very simple like a young child learns. It may seem foolish but relearning what you already know olny makes your memory sharper than ever. Ill pray for a change for your problem. God is Great!

 

[boolscott]

Not only that, I now have large outstanding loans. I walk out of the lecture and I have forgotten chunks of what I have been told. I return to class and I have forgotten things that I have read and understood, which has done wonders for my self-esteem.

I'm also in a bit of trouble with student loans. I aborted university 2 years down the line, after my brain surgery. I'm now just doing a diploma recognised only in south africa. I used to get shouted at by my legendary maths lecturer when he saw me taking down notes. He kept saying pay attention and stop taking down notes. It was very important for me though so I chatted to him about my memory problems.

I really recommend doing memory tests, they helped me out SO much.

 

[Aubrey]

boolscott, you are very brave for trying brain surgery. My doctor wants me to take the preliminary tests for brain surgery, but because I have good though incomplete control, I do not want to do any of that because I don't think I can do recovery and college at the same time. Also, my epileptologist is only 99.9% sure he knows generally where the origin point of my seizures is. And I have found on the internet not one single story of a permanent 100% cure for a right frontal lobe surgery.
I am going to push my luck and keep digging myself into a deeper hole both in regards to student loans and my pride in front of family and friends, but as for the second, I can't really place to much importance on that or I won't be able to get out of bed in the morning.
I will look into doing the memory tests. That professor sounds like a bit of a nut, legendary or not! Good luck and stay strong with your degree even it is "only" good in SA.

 

[Mike]

Surgery changes everything!!! It dosnt matter what they say. After the first two surgerys, grid placement, then resesion of focus. They usally move to the next place where they think that they will do the least damage. Been there done that. There arnt really sure. Theres alot of guess work involved. Do all the research. Frontal Lobe surgery involves your major muscle groups.

 

[foreverdark]

My memory is not as bad as some, I guess. That sure sounds rough, foreverdark. I sure feel what you are saying about the knowledge being there, but in a box, if I understand you correctly.

I must say that it isn't that bad EVERY day. Most day's it is a scaled down version of this. My memory is worst for the first four days to a week after a seizure. My wife is so used to me needing to ask her about something I already know that a lot of times she just tells me before I need to ask.

I had a probable seizure the other night and since then the rememberer is quite irritated. It took me 10 minutes or so to remember the password for the computer. I made the kids breakfast and forgot I was checking my FB Twitter and plurk so I started looking for the TV remote.

The memory box, that is how I think of it, is like this box that holds a memory, so there are millions(?) of them. Some I can "see" others are invisible but I know are there. Sometimes if I am lucky I can work real hard and make it appear. But I have to really work at it.

I am going to try all these memory things I've read about. Numbers really confuse me, literally can give me headaches and cause my "spells" I have. Crossword puzzles irritate me, but I'll try em. How about word finds? Can they be classified in the same category as memory helpers?

 

[Aubrey]

I don't know. I guess I was just hoping we could share on here what we have tried and what works and just as importantly what doesn't. I don't think something that is stressful or causing headaches is going to be helpful. I have noticed with school that I need a lot more repetition and time than the other students, or than I did in undergrad, even though I had E already then too. Also, my learning style has changed. I am a lot more visual than I used to be. I used to be able to pick things up from lectures and notes.

Another question for people on this thread about your memory problems: do you think it is your medication or the seizures?
My memory was okay when I was an undergrad and on one medication, but then I took a few years off. During the years off I started having breakthrough seizures and new seizure types, so I switched to a different med and added another and another, and I have been having memory problems ever since. I don't know if my memory was just 'worn out' from the number of seizures or if it is the medicines I am on or both. Everything I have read about brain surgery warns against it.