Blackouts and memory problems?

    • Anonymous
      October 22, 2008 at 12:41 pm

      I was wondering if any of you have suffered from blackouts or memory problems? Is this common? Sometimes I forget how to do the most common things such as writting a check or simply other things that I should know. I am frustrated.

    • October 22, 2008 at 1:55 pm

      Kevin has cidp, but he too gets memory loss/confusion issues. I think (just an opinion) that when he gets stressed or anxiety, it seems to heighten the issues. I think the stress of the disease itself manifests itself in the form of headaches, memory, attention abilities. He has been extremeley stressed lateley about a new math concept they are working on at school and the headaches, anxiety and memory issues are intensified. Good luck!
      Dawn Kevies mom

    • Anonymous
      October 22, 2008 at 5:07 pm

      I thought i was the only one. this is why i dont like to go any were. i can walk from front room to kitchen and dont know why i even came in there. so when i go back light comes back on this happens more often now for some reason i,m only 39. this is strange i have doc appontment nov 4th so i have other questions to.but i was wondering if any one has had tremmers and out of blue just fall out or crash/sleep?well had another question. but there goes them brain farts oh well i,ll think of it later i hope.

    • Anonymous
      October 22, 2008 at 6:56 pm

      Ihave lots of memory problems. Doctors tell me they dont know why. used to blame it on the neurotin but dont tke that anymore. its very frustrating. i keep a planner at least i can try. still dont know what day it is half the time.

    • Anonymous
      October 22, 2008 at 8:39 pm

      Yes Kinney, I have memory recall problems also. I don’t blackout anymore, since gbs/cidp that problem has corrected itself. I’m backwards of others I guess.;) Just the other day I was trying to think of plant names to help my daughter with her school project, I knew what they were but I just couldn’t come up with the names or anything about them. Still bugs me today! The first I noticed my memory problems was in the hospital, I couldn’t do simple math, and I use to be good at math. I do try to exercise my brain, play games, cards, sudoku etc. The mind needs rehab also I figured. As with the rest of your body, recovery is slow, don’t be too hard on yourself! Don’t limit yourself! Take Care.

    • Anonymous
      October 22, 2008 at 10:40 pm

      i would stare at the knobs in teh shower when i was freezing or burning up, and wonder how in the world i was gonna fix the problem. looking at those knobs was like trying solve a riddle. very frustrating!

      fyi- pingpong/table tennis is the best sport for brain function. it is ideal for preventing dementia/alzheimers, etc. the reason is that you are concentrating on many things at the same time – your stance, footwork, your swing, and the spin of the ball. its a major hand-eye coordination sport, actually involves coordination of the entire body.

      table tennis is an awesome sport for people with disabilities. hubby and his friends play all the time at big tournaments and stuff. im talking state tournaments, and his coach was an olympic coach in the 1990’s. i see many people with disabilities play, and play extremely well. some of the best guys are in wheelchairs, use braces, etc.

      if anyones interested in the sport, i believe the best website to go to is or .com it is actually really fun and challenging if you know how to play right. it is not as simple a whacking the ball back and forth mindlessly.

    • Anonymous
      October 22, 2008 at 11:21 pm

      I can certainly relate to all of this. During the terrible months of GBS last winter, I know I experienced some damage to my memory and basic thinking skills. Reading was very confusing for me; writing was very difficult–my writing and signature changed; speaking out loud was very hard–the words I was thinking came out differently when I spoke them. I’d forget many things immediately after hearing them, and had to constantly remind myself of what I was doing from one minute to the next.

      I regained a lot of my abilities over this last year. I learned how to read out loud again just by training myself to read aloud from simple books and then more complicated ones. I practised speaking aloud often in order to relearn simple communication; sometimes I’d repeat a simple sentence several times in my mind, then several times aloud just to reprogram my brain with it.

      The hardest things have been math skills because the numbers just seem to be all jumbled up, and I can’t think through how to add or subtract without a lot of hard work. This is getting better with more practice. My spelling was also a huge problem with the GBS; and this has improved with practice and time. I still make lots of mistakes, but keep correcting them. I feel like I have to reprogram my whole brain about everything. I have forgotten many things which I used to take for granted; and sometimes it takes too much effort to think through anything complicated, which used to be easy for me. Resting helps, because then I am renewed, just like my muscles are after resting, and I can continue on refreshed. I guess what I’ve been through is pretty much like the experience of a stroke victim, only it didn’t come on all at once; it was over a period of weeks and months, and very devastating.

      Now I make lots of lists, and review things mentally and verbally all the time. I just keep plugging away, and I think I’ve made a lot of improvement. But it has been one of the hardest times of my life so far, and I have a long way to go in my recovery. Everything is just so exhausting; and I have to rest so often just to function even this much. I’ve had to decide on priorities, and let the rest wait. I often think that this is a lot like the condition of having ADD or FAS. What’s done is done and “it doesn’t help to beat on a dead horse”. But with rest and practice and patience and time, you can train or re-train yourself to function to the best of your ability.

      Well, I’d better call it a night. My mind is exhausted just from writing this.


    • October 27, 2008 at 10:41 pm

      I can totally relate! When I was first sick, I felt as if I was drunk. I could think/see what I wanted to say but it just wouldnt come out right. Now, things have gotten much better, but I still have moments where I forget why I went into a room or what I was supposed to do or get. I have been playing puzzle games to exercise my brain cells hoping they reconnect or whatever. I guess it is due to our nerves not communicating properly. I’d blame it on meds, but I only take xanax when I need it and this was going on even when I was on no meds at all. Sometimes it is very frustrating because I can not for the life of me get the right word or phrase out of my head and into words. I feel as if my IQ dropped a few points or something. I’ve always been easily overwhelmed, but sometimes now it is worse and I go into ‘self preservation mode’ and dont want to do anything. I just hope it doesnt get worse as I age because at 38 it is already disturbing enough!

    • Anonymous
      October 28, 2008 at 10:45 am

      To: fairly odd mother

      I read your post and appreciate your comments on the subject. As far as IQ is concerned, I’m sure I’ve lost quite a few points there. I’m noticing that it is possible to rebuild my cognitive skills and data base, just by painstakingly relearning and practicing. Many of the games that are featured “On the Lighter Side” of our Forum are actually beneficial in doing this. Ex: The Word Game was very confusing to me at first because since GBS (1 year now), I am having a great deal of trouble reading words, and being confused by letters in words. But now, my brain has retrained a little from playing this game, and I can actually focus on each word, rescramble it to form another one, and do this without major mental confusion.

      Another thing I want to do is redevelop simple math skills. I am finding that I’ve become quite dyslexic from the GBS, so numbers are very difficult for me to read properly, and I can only do it in groups of 2 or 3, as long as I can visually block out the other numbers in the group. When I am tired, this is impossible to do, but after resting, I have greater success. This is improving, but very slowly.

      It also helps to say things out loud, or repeat them several times in my mind, in order to remember what I am doing from one minute to the next, and what I have already done (like locking my front door). I can no longer trust my memory. Also, I am finding that I can never leave my stove unattended for even a moment, because several times I have forgotten that the burner was on. And when outdoors and walking down the street, I have to focus on watching for traffic, because sometimes I feel so dog-tired that just taking steps with my feet consumes all my energy and concentration.

      It’s very difficult to retrain myself, but I have seen progress.


    • Anonymous
      October 28, 2008 at 12:10 pm

      I have slowly regained on the memory problems but realize my thinking process is very slow compared to before GBS. I can not keep up with conversation in a group of people, can only be 1 or 2 people at a time. I have to stop and remind myself of what I was doing. It took me seven minutes to put on shoes and socks and 23 minutes to sweep my very small kitchen. No, I don’t time all the time, just did it out of curiosity. I guess it stands to reason that everything else has slowed down since GBS, that my mind has also slowed down. I relate to the spoon theory to get through the day, it pertains to my mind also. As I run out of spoons my mind slows down. I notice I have more spoons to get through the day now than over the last few months.
      Look forward to the day when I do not have to reserve spoons to make it through each day.

    • Anonymous
      October 28, 2008 at 3:36 pm

      Kinney, it seems that I remember you saying that you had trouble with sleep. Being tired can most definately mess up your cognative functioning. Also, some of the sleep medications can cause some memory problems. I know that when I was taking Ambien it made me very forgetful and I would not remember whole chunks of my day. A doc. I work with also said the same thing about Topomax. If you are really concerned, you should maybe think about talking to your doc. about how some of your meds could be playing a part.