help...? - Epilepsy Message Board

Roy_P · 07-13-2004, 11:41 AM

Hey guys

my name is Roy Poitras... i'm an 18 year old boy from canada... and i need help, i dont know where to turn for this help either because i live in a small town and not a single person here knows what i'm talking about or can relate to me when i talk about seizures...

my problem isnt really my seizures... it's the memory retention that follows... i'm sure many of you here know what thats like... but what i need to know is how do you deal with it? i've tried wrighting down everything i do the day after....but looking back on journals just doesnt really feel right... and it's affected me so much. my girlfriend left me because she thought i was an insencitive ***** because i would forget conversations or "moments" from memory retention periods... it's caused me an extra year in highschool because i lose whole days at a time, and the list goes on...

but i guess all i'm really asking is suggestions... or ideas on how you guys would go about dealing with this, because i've tried so many things and i dont know how much more i can take this...

mnt89 · 07-13-2004, 12:41 PM

Hi Roy -
I have some minor problems with memory, too. Mine is basically forgetting where I put things & stuff like that. I do, though, forget conversations sometimes and often repeat stories to people because I have forgotten that I've already told them. Anyway, I have designated places for things and before I lay things down, I make sure I'm putting them in the correct place. I've heard that taking Gingko will help, but I don't know if it's safe to take it with seizure meds. I take Dilantin and have just come to terms with the forgetfulness. I have learned to laugh it off, but I know sometimes it's not that easy. I'm sorry to hear about your girlfriend. Maybe if she were to read some of the posts here, it would help her to understand. From time to time, my wife will read them and she says it helps her to see what people with E go through. Best of luck!
Mike

heavenangel24 · 07-13-2004, 12:56 PM

I understand. I have memory loss. I take tegretol xr and topomax both.
I have seizures but mine are controlled with medicine thank goodness.
I have learned to deal with the memory. I know its hard.
Some things you can remember but some things you just cant.
People who dont have the same problem dont understand what I go through or people who have seizures who have memory loss.
You just cant let it get you down.

kayakmom · 07-13-2004, 03:00 PM

I understand from watching my 15 and 13 year olds who both have seizures. Yes, they have memory problems. Having a certain place to put things works for me (I have memory issues with another condition.) I have to condition myself to make sure I always put my keys, wallet etc, in a certain place. I have a place near the front door where I put things that I need to take with me AS SOON AS I THINK of is, I put it there. It has become habbit to look there as I go out to see what I need. It does help.

Conversations would be hard to write down just so you remember. You may try a short journal each day? Maybe right before bed and then it may help you remember or you can look at it to jog it?

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I would AVOID GINKO or any herbal supplement without your neuro being strictly involved. Many have problems with interfering with seizure meds, some can lower the seizure threshold or interact with it...ASK the doctor AND pharmacist before taking anything.

Talk to your doctor also about the memory issues some seizure meds seem to increase these problems and he needs to know...

I am so sorry the girlfriend did not understand. Work to do what you can to improve, but keep working on teaching them about it as well.

Art_930 · 07-14-2004, 09:12 AM

Hi Roy - welcome to the boards from another Canuck. I understand your problem with memory of conversations. One of my tricks is to say "Have I told you this before?". That at least covers my end. Another thing I do is say "tell me again what you told me yesterday about whatever". Your close friends will soon get the idea that you're not forgetting stuff on purpose.

Best of luck to you.