Memory getting worse

[valeriedl]

I've had epilepsy for 20 years and my memory has never been that great. I've forgotten a ton of stuff that happened before I was diagnosed. My long term memory, things that happened years and several months ago I wouldn't remember. Things that happened a day or two before a seizure I wouldn't remember either.

It seems like my memory has gotten worse. Things that happened right around the time of the seizure, even just hours, I'll remember. But now things that happened only a few months, or even weeks, ago I won't remember. If someone will tell me about it in detail then chances are I might remember it, not always.

I have a heck of time with words. I know exactly what the word is but it just won't come out. I'll have to describe it and sometimes it seems like I'm playing charades. I recently went grocery shopping and got eye drops for my boyfriend. I wanted the eyedrops in a separate bag but could not think of the word eyedrops. I kept pointing at my eye and telling the cashier 'The things for your eyes'. After playing charades, and she had a few guesses, she realized what I wanted.

People, especially my parents, get so mad because I'll ask them the same thing five time. But I can't help it, I just don't remember that I've even asked it once.

Trying to explain all this to someone is useless because. I go to the neuro in January, maybe he can.

 

[Bernard]

It takes a lot of patience and love to deal with these challenges.

 

[Heavy Kevy]

I’m continually getting reminded of stories from the last 15 years that I have no recollection of.
Searching for words is frustrating. I know a few without epilepsy that have a similar problem.

 

[gigi]

You have plenty of company in this area, I know that is not much comfort. I am in my sixties, and have had seizures since childhood. I have the exact same problems with memory and word find. My kids give me a hard time, I think it’s their way of coping with my chronic condition that can be serious. I am researching taking a supplement for it, not sure what I’ll go with. I also have an appointment with neurologist in January, and will discuss with her.

 

[Army Vet]

Yeah, between the meds and the seizures themselves, memory is definitely a liability for us. I can definitely understand your frustration with words. You know what you're trying to say, but have no idea how to say it. Charades is the perfect way of describing what you have to do to say it, except it's not a game. My short-term memory gives me more problems. My biggest thing is, "Did I take my meds this morning???" Since everyday is practically the same, they all run together. The pill calendar has saved me multiple times. It has paid for itself. Once I think I took them twice and it wasn't fun. It's just as bad to take them twice (if not worse) than missing a dose.

 

[Bernard]

... I am researching taking a supplement for it, not sure what I’ll go with. ...

My wife swears that Prevagen (available at local grocery store/pharmacy) makes a noticeable difference for her. I can't really notice any difference when she takes it versus not, but she says that she does. It's not cheap though.

 

[gigi]

My wife swears that Prevagen (available at local grocery store/pharmacy) makes a noticeable difference for her. I can't really notice any difference when she takes it versus not, but she says that she does. It's not cheap though.

I know people who swear by that, but too pricey for me. I need something for brain, heart and muscles!

 

[Sabbo]

AEDs cause memory loss--mostly short term. Tomapax is especially known for it & nicknamed "Dopamax".

I can often literally see what I want to say in my mind as if it's written on a piece of paper, but it is as though I can't get my brain & mouth to connect. It used to be really bad for me when I was on Topamax/Topiramate--now I take Zonisamide (500MG) & Xcopri (200MG).

 

[valeriedl]

I went to see The Wizard of Oz today. It's one of my favorite movies and I don't know how many times I've seen it. I could have probably said every word and sang all the songs along with the characters. I saw it today and I can't believe how much I don't remember about it! Once things came up in the movie I did remember them but I didn't remember that they were going to happen before they did. Don't know how many people have seen the movie but I thought the movie was pretty short because when she got to Oz I thought she was going home. Didn't remember at all that she had to bring the wicked witch's broom stick back to the Wizard!

Stuff just doesn't want to stay in my brain any more.

 

[gigi]

I like that movie also. I know that feeling, especially when I get into discussions with other people about movies. I am amazed at how much they remember about a movie and how little I do. I have to be prompted about characters, plot, actors.

 

[Bernard]

My wife basically does not remember any movie that she's seen before unless she watched it within the last month or so or unless it has some strong emotional memory associated with it (like watching it with a parent and it was one of their favorite movies). She can watch a good movie hundreds of times and enjoy it every time. I on the other hand, don't find them so interesting on the 100th viewing.

 

[Sabbo]

My memory issues have improved a little since I switched to Zonisamide compared to Topiramate, but not that much. Sometimes I think it's just due to taking AEDs for so long, or maybe it's a side effect of all of them to some degree. For example, I'll still have problems expressing what I'm saying because I can't find/remember the words. I constantly do word games, and I quilt, both of which use lots of memory.

 

[Porkette]

Hi Val,

I know where you are coming from when it comes to short term memory loss. Some of it could be due to the meds a
person takes but a few yrs. back when I had brain surgery my neurosurgeon removed all of my right hippocampus of
my brain because I had so many seizures over the yrs. that it shrunk and hardened the hippocampus and it was no good
anymore. I hope I'm wrong but maybe this is what's going on with you. Ask your Dr. to do a MRI to see what's going
on and also tell your Dr. if Alzheimer's or Dementia runs in your family like it does mine.
I wish you the best of luck and May God Bless You!

Sue

 

[gigi]

My neurologist suggested an MRI. When I went to appointment they put my head in a cage and sent me into the closed machine. Had a panic attack and they got me out! I have since tried to find an open MRI that my insurance will pay for, no luck. They informed me after the fact I needed a sedative. Oh well!