starting have memory problems

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Belinda5000

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I have never had memory problems except when I was on Dilantin and that did a number on and it was like my memory was erased. and everything came back when I came off Dilantin. I'm starting to have problem with my memory again and not remembering thing like did I pay the rent and everything slowly comes back in pieces.:twocents:
 
Wow, so sorry, Belinda!

It sounds like it's time to start writing it all down.

Me, I'm going to make myself a chart because I take meds more frequently now (used to be once a day), so I find myself tugging at the memory and worrying whether I took that last med or not. I'm going to do one of those charts and just check it off when I take it. It's either that or get a pill box and fill it weekly.
 
Belinda, have you mentioned the memory issues to your doc? As you've observed it can be the meds at work, though it can also be related to seizure activity. I know you've tried a lot of meds, but maybe your dose could be tweaked a bit to see if it helps. And there are workarounds that can help: My memory is still pretty good, but I write a lot of stuff down -- I have boxes on my calendar to check off when I've payed a bill, and I write post-its to remind me of what's on the day's schedule.
 
Belinda5000 said:
I have never had memory problems except when I was on Dilantin and that did a number on and it was like my memory was erased. and everything came back when I came off Dilantin. I'm starting to have problem with my memory again and not remembering thing like did I pay the rent and everything slowly comes back in pieces.:twocents:
Click to expand...
Yes I have talked to my neuro , and I never had any problem with my memory before.
My neuro called me and were starting with my phenobarbital 1/2 a pill every night and I see him tomorrow and were going to talk about it some more.
 
Belinda, I'm very surprised you've never had memory problems, except while taking Dilantin, given all the meds plus surgery you've taken. I can't remember last week because of the meds I've taken and because of the LTL I had. I use a pill box to remember if I've taken my AEDs or not, otherwise I would not remember by noon if I had taken my morning dose.
And lots of times, I forget mid-sentence what I was just talking about. Hmmm........ so humiliating. But when I was taking a large dose of Topomax plus other meds, it made my memory much worse. So it could be your meds, too.
 
I got one thing done at my appointment yesterday.
I'm coming off Phenobarb August 10th I'll know longer be on it at all.
 
Nakamova said:
Belinda, have you mentioned the memory issues to your doc? As you've observed it can be the meds at work, though it can also be related to seizure activity. I know you've tried a lot of meds, but maybe your dose could be tweaked a bit to see if it helps. And there are workarounds that can help: My memory is still pretty good, but I write a lot of stuff down -- I have boxes on my calendar to check off when I've payed a bill, and I write post-its to remind me of what's on the day's schedule.
Click to expand...
I mentioned the memory issues with my neuro, and he wants to see if it helps me coming off the phenobarb.I talked to my cardiologist nurse and I have a feeling it's not my epilepsy drugs but other drugs I take causing the problem.
 
I like u also had a lot of forgetfulness with Topamax had to tell doctor to take me off
 
My forgetfulness I talked to my neuro about. I'm slowly coming off Phenobarb thank goodness and my memory seems to be returning to normal.
 
That's great to hear Belinda, sounds like the memory issues were just med-related and temporary.
 
Belinda, I am thrilled that you are bouncing back and you don't have anything to worry about. You are a tough one! But I want to say that there is so much that is optimistic in the research into early cognitive decline that I have decided that even if they see my hippocampus is as dried up as an old prune, I probably will still keep going. The key is in exercise and good food and good friends and plenty of thinking. Do I really need scientists to dictate what'is good for me? And do I need to reveal all my many deficits to them for their scientific scrutiny? Is this REALLY good for me?
My VEEG showed that I have a problem and i am scheduled for a fancy-dancy cognitive workup in September with a whole new group of neurologists. I figure they will chart it all. They will tell me what I already know about how I had better eat, exercice, think and socialize and when I get done with it I will feel BAD ABOUT MYSELF. They will get the enjoyment of their statistics and I will get the job of having to endure yet another cliff hanger...will I end up in a nursing home? And if I do it will be my own fault. I know the score. Why would I need to be told? So I may not do the workup. [How can I turn down this expensive workup that our government is going to pay for? ] On the other hand, up to recently I have been a big advocate for scientific method and reason and in the end maturation usually wins out with me. It has only been since epilepsy has entered my life that I have wondered if maturation is really such a good idea. Signed, An Aging Spoiler
 
MEMORY AND TAPERING OFF ZONISAMIDE

In fact, I finally decided to cancel the memory assessment workup until after the anti-seizure medication is out of my system for many months [if then] and after I have begun to more energetic. When I first posted about my memory problems I was not thinking about the series of anti-seizure medications I have been on in the last several years and their accumulating side effects. However, since then I have thought of practically nothing else -- with great concern.I have traced the effects of the anti-seizure medications on my functioning that has previously been insidious and mislabeled by me and my neurologists, for the most part. Except for problems of balance and double vision, I have not linked cognitive or emotional issues to the various medications and neither did my neurologists. My impairment has been ever worsening for over a year. I don't think the current neurologist would have noticed anything was wrong unless my eyeball actually fell out onto her lap. The operant word is INSIDIOUS.
If I am now reading the situation right, there is hope that I will return to myself as I knew me. I am maintaining the KETO am going to some lengths to treat the potential seizure risk before it happens without medical intervention.
 
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I have horrible memory problems. I don't know if it's due to my meds, seizures or both.

I had my first seizure when I was 27 and I wound up in a coma for about a month. When I came out of it I didn't remember almost anything that happened from my junior year of highschool on. What I do remember are things that I really liked or were really funny. There was a job that I worked at that I really loved. I remember so much about it I could probably go back there and start working again without a problem.

My husband will tell me about things that we may have done last week, last month, last year or longer and I have no clue what he's talking about. As I said if I really liked it or thought it was really funny I do remember it.

I had no clue who the guy was that I had been dating at the time, must not have liked him very much! I had to ask a family member who the guy was that kept coming to see me at the hospital, giving me kisses and telling me he loved me. My husband's biggest fear is that when I come out of a seizure I'm going to forget who he is. I told him that I really love him so I know he's still going to be up there!

I have post-its all over the house! If you looked at the wall above my computer you wouldn't even know what color it's painted. I have to write down all the passwords for my different web sites. There are people's names and phone numbers and who they are - like friend, doctor, someone from a company that I talk to a lot and so on.

I have a pocket calendar that has EVERYTHING in it. Any up coming plans, events, things that I might have done for the day or anything else that is important. At times this will have some post-its in it too so I can hang them up on the wall when the time comes closer that I'll need to know about it and make sure I remember.

I keep a post-it for every month with all the bills I have to pay. Once I pay them I cross them off. When the list is all crossed off for the month I write up a list for the next month.

I keep my pills in a pill case plus an alarm on my phone. If I didn't do this I'd never know if I'd taken them or not.

I've found ways to help me 'remember' things but it doesn't always work. It's so frustrating that I just want to punch a wall!
 
Thanks Val. The frustration factor just kills me. I also remember what is really funny and sometimes I remember what is really funny only at a particular time of day -- early in the morning. I tend to feel like I am in a movie in the early morning, and THAT is really funny! What a life!
 
Val -- I got to thinking about how lucky we are that we remember what is funny.And I remember stories. Do you? My sister, now gone, was that way too. When people brought up unpleasant subjects to her in an attacking way, she was so gracious and pleasant because she could not remember what they were talking about. But she would graciously inquire and then when they told, she would say, "Oh, I see what you mean ..." she did not get mad [unlike her little sister]. A few hours before she died, she spoke for the last time and she said, "I am going over the rainbow." I am so glad you reminded me of all this!
 
Val -- I am on a roll. In my family telling stories, especially funny stories, was a big part of family life. What a blessing. I am pretty sure my memory works best and I am most self confident when I am telling or listening to stories. Do you know what I mean, Val? The great thing about a story is there is no question about whether it is true or not or whether you are being coerced or not -- it is just a story. It is what it is.And my memory works well and is glad.
As soon as information is outside the form of a story, for me there is an issue of survival -- mine. If I forget this information, then what? OR Does this person like me or not? ... like that. I start to put up the post-it notes like crazy!
 
I was on clobazam and I was pretty much useless when it came to school and talking to people. My memory was also screwed up. I'm in highschool and the dr put me on clobazam right before finals. I couldn't remember what we had learned the day before. I am a all a student and or me, it was terrifying! My whole freshman year pretty much erased. Let's just say I didn't have to take any final exams!
 
Oh! that sounds so disheartening and freaky. I am hoping the school authorities are in your camp and are flexible and helpful. I can tell that you are in for some adventures.
Being 15 is a big adventure anyway, but this is extra -- and the benefits in terms of self knowledge may be hidden at the moment but they really may be very great in the long run.
I hope you keep posting to let us know how things are going. My best, Bidwell
 
I didn't realize this until you said it Bidwell but I do remember stories, songs and things like that. I could still sing every song of a band that I really like or practically talk right along with the actors in movies that I liked that came out in that time span that my memory was practically erased. Half the time I couldn't tell you what I did the day before though.

I just LOVE it too when people tell you those 'you don't remember doing that' stories! When I ran into a friend once I was telling her about my epilepsy and that my memory was really bad. She asked me if I remembered the time we stole a car and drove it to another state. I told her that I couldn't believe we did that! She just gave me a really goofy look because she thought what she had told me was really true. My family is good at doing it too. My husband will get mad at me at times for not being able to remember things or when I do remember them it's not how what ever it was really happened.
 
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