Memory/word loss.

[Freda]

Another question for you lovely folk and I'm sorry to keep bombarding you but I want to hear from actual people and not just google.

Has memory loss or word loss happened to you - either for a few days after a seizure or while you were still finding medication that worked? I'm seeing my daughter have the occasional loss of a word, she'll be talking and the wrong word will come out in a sentence, she stops to try and correct it but if I see she's having trouble finding it I say the word and just carry on with the conversation - I try not to show it's noticeable and when she mentions it I just say it'll settle down once your correct meds are found. I obviously don't know if this is true but I don't want her worrying. She also finds some things that have happened in the past few months she has no recollection of, they'll only be small things - like her nephews hospital appointment that she had a conversation about but she said she can't believe she can forget and also still doesn't remember it when we've talked about it. Again we all try to make light if it saying we all forget things but it worries her.
Is this a usual part of having epilepsy or will it settle back to how it used to be in time? Please be frank because I can handle it.

 

[MountainMama]

I'm new to this too, and just learning/trying to make sense of this. (And also desperately looking for real life data instead of just google statistics!) But before all this started in June my memory was incredible. In June I had a hemiplegic migraine followed by a cluster of complex partial seizures (and an epilepsy diagnosis) and most of that week is gone. I was delirious and remember very little. For the month following it I had major memory issues. I could have normal conversations but would often forget what I was talking about and had a hard time with recall. For example if you asked me what city I lived in or How old I was I couldn't answer. I guess that was post ictal delirium. I also had a hard time laying down short term memories. My brain got less fuzzy and my memory issues got better and better.

I've been on meds since the end of July and they've been really positive for me, but I also have a much harder time with my memory now (vs before all this started). This morning I couldn't for the life of me remember paying for my coffee. It's been bothering me all day. I can't remember if I've completed simple tasks or not and I may have to check more than once. (This may be related to simple partial seizures, but I don't know yet). I also mix up words sometimes. I know that is a side effect of the medication. I often say "appartment" when I mean "appointment", things like that, or my words sometimes come out garbled and I have to stop and think about what I am saying. And yes, I sometimes have to grope around for the word I am trying to use. These things are really frustrating. My brain wasn't like this before. Its weird to feel like a stranger in your own head. But memeory and word issues aside, I am really happy with my meds and my life is better with them so it's a price I am willing to pay.

As far as I understand some degree of memory loss generally comes with epilepsy for most people. But there's no way for me to say for sure.
Hope that helps.

 

[Freda]

Thank you so much for your reply MountainMama, it really sucks being diagnosed doesn't it?
My daughter actually said recently that the effect of the medication is worse than having seizures because she can't think like she used to but of course she knows she has to stick with the meds all the same. She says at times she doesn't feel like her anymore. She's a medical secretary and she hopes her job will help her to keep her brain active but she's aware that she sometimes 'goes off into a stare'. She's had two seizures at work and the second one was with a consultant and doctors present who stayed with her until she came out of the confusion that goes with a seizure. She's fully supported at work and has told colleagues to nudge her if she goes into a stare and also to tell her if she's being moody - she's taking Keppra and knows it can leave her short tempered at times.
The memory thing bothers her though and she gets annoyed with herself for forgetting words, I just hope it doesn't worsen that's all.

 

[Sabbo]

Hello. Memory/word loss is a known side effect of Topamax--hence it's been nicknamed "Dopamax". There are often times when I know what I want to say, and can actually 'see' the words in mind, as if they're written on paper. Thanks to Topamax, though, my mind & mouth can't connect. My short term memory has also been greatly affected by it. Vimpat, which I also take, affects memory, too.

 

[valeriedl]

I have a HUGE problem with word loss. I know exactly what I want to say, can see it in my head or even be looking at it but I just can't think of the word. I can describe what the word is and someone usually figures out what it is I want to say. One example of this was when I was having problems with my freezer so I called the store I bought it from to see if they could come out and fix it. I was trying to tell the man on the phone that it was my 'freezer' I was having problems with, and looking right at it, but the word just wouldn't come out. I ended up telling him it was the really cold part of my refrigerator and he finally asked me if it was my freezer.

Sometimes I'll want to type a word on here but just can't think of what it is so I'll google a description of it to find out what the word is.

I have a very bad problem with memory loss. After my first seizure, which was very bad and had to be put in a coma, I lost nearly 10 years of memory. I didn't even know who the guy was that I was dating! At first things would start to fade away with in a few days, especially after I had a seizure, but now it might take a few months. There is stuff that sticks up there though, even from those 10 years before the first seizure. But it seems once it's gone it's gone no matter if someone told me it happened or not.

One good example of this (there are many more though) is about 5 years after president Reagan died things started coming on TV about him. I asked my husband if he was still alive because he was pretty old when he was in office. My husband looked at me and said "Yes, we even watched his funeral on TV" but I don't remember doing that. Every time something would come on TV about him I'd always ask him if he was still alive. My husband would get really mad because he thought I was trying to joke around with him but I honestly could not remember that he was dead even though my husband told me he was every time I asked. It took me probably 3 years to actually remember he was dead and I think it was only because my husband had to tell me he was for all of those years.

I don't think my neuro said if the memory loss was due to my meds but it was my brain that was causing it.

 

[Freda]

Thank you all for the replies. My daughter (Carly) will be relieved to know it's not just her and that it's another part of the condition, even though it's a tough one to deal with.
She's had CT and MRI scans that have shown there isn't a tumour on her brain but I know she's still worried there might be and knowing this memory/word loss happens with epilepsy will at least stem those fears for her.
Her medication is now at 750mgs morning and 1000mgs night with the Keppra and the seizure she had last week was the first in eight weeks - before the Keppra she had a seizure once a month, so she's keen to stick with the medication and hopes it will delay any seizures a little more as time goes by.

I'm so glad I found this forum and all you lovely members. Take good care of yourselves and I hope you are all in good spirits. xx

 

[Nakamova]

I've had word loss happen as a med side effect, and yes it can also be related to where in the brain the seizures occur.

I found it helpful to have a neuropsych exam a few years back. It's a series of cognitive and memory tests administered by a neuropsychiatrist. The results identify what specific kinds of memory or word issues are occurring, and can set a baseline for tracking any subsequent changes in cognitive function (either positive or negative). The neuropsychiatrist can often get a sense of what may be causing the cognitive issues, and can also suggest workarounds or techniques to help with memory problems

 

[valeriedl]

For the first few years after I was diagnosed with epilepsy I took tests, not sure if they were cognitive and memory or not, that at the beginning I was shown some pictures. The test lasted probably a half hour and during it I was given all sorts of other things to do to test my memory. At the end of the test I was shown some pictures and asked which ones were in that group that I was shown at the begging of the test. I don't know if I knew any of them that were in that group that I saw from the start.

 

[finalpoet]

This conversation may be over but I have an incredible amount of experience in this issue. When I'm having a partial seizure I can't find words. Well either I can't find them or I can't think of what the word means. So I can't think of it's definition. But that doesn't mean they are partial seizures. Some of my meds have a side effect of memory loss. My dad says my memory has improved lately since we changed one med. My neurologist has also noted that seizures can cause memory loss. What I mean is different than my first example is having consistent seizures or epilepsy can cause me to have a lagged memory conconstantly not just when I have a seizure. So I haven't been able to and it's difficult to pinpoint if it's meds or seizures causing memory loss.

Sent from my SM-G950U using Tapatalk

 

[Sabbo]

I can recall things from my childhood, and sometimes have problems recalling things from a few days/weeks ago! I find the word-loss issues to be the biggest problem, though.

 

[Topcat]

Yep, my short term memory stinks. I even saw a specialist about it. (It must have been a similar test to the one that valeriedl took.)
He had no solution.
My epileptologist said to kind of make a mental note and not just toss things down without thinking about them.
I came up with things to cope. We have a recycling program here. We put can's etc. in a bin that is picked up once a week after it's put on the curb.
To remind myself to do that (if it's not full I don't bother to) I put an empty can on the table.
I don't carry it around, but I throw my stuff in a small tool bag, (watch, wallet, keys, comb, etc.). I jokingly call it my "purse."
It does help to put things in the same place.
Like Sabbo noted, I also have a great long term memory. Sometimes when I think about things from the past it even seems like I can smell them.

 

[Freda]

Thanks for the recent replies, so much to learn about this condition and small things seem to be happening all the time. Yesterday she showed me a child's bicycle which she said was great for a toddler because it didn't have wheels, she meant peddals as the wheels were on full view. We have started laughing things like this off now because she has accepted that it's part and parcel of the condition and with the posts on this forum she is becoming more reassured that it will happen every now and then and not to worry unduly about it.

I wish I could make it go away for all of you, you've been through so much and now I can see first hand what a rotten effect epilepsy has on everyday life. Thankfully this forum is a great help and you are all real troopers.
Take care and have a good day. xx

 

[Sabbo]

I do a lot of word puzzles--especially "fill in" puzzles. They're like crosswords in reverse. You are given a word list & have to figure out where they fit into the grid. I also enjoy doing large (1500+ piece) jigsaw puzzles, but space is an issue.

 

[Lisa36]

To Freda: Not memory loss, but periodic word loss, or inability to recognize or access specific words, yes, is certainly a rather common scenario with me. Since my operation I have had aphasic simple partials that have very often occurred in a cluster-like pattern, where several can occur over a series of days, often tapering off on the last day(s) with very short and brief but very repetitive aphasic simple partials. If these similar aphasic moments your daughter is having is always following a more severe seizure, it could be because of a similar pattern, and likely is just temporary, though it’s not too uncommon for such clusters to linger on for days after the stronger seizure. In such situations lorazepam is useful, and from my experience very effective, in putting a temporary stop to repetitive clusters of seizures. However, good luck particularly to her in solving the primary issue of the underlying etiology causing her seizures in the first place.

 

[Freda]

Thank you for that info Lisa. Her seizures are not yet controlled and her Keppra is now at 1000mg morning and night but she still has weird feelings which she can't really explain and also the occasional dizzy spells. Last Friday on her way to work (with her sister) she had a severe dizzy spell which she thought was going to be a seizure but luckily it wasn't. It left her confused for around fifteen minutes and her sister brought her back home. She does have word loss more often but not greatly, today while trying to say 'table' she could only think of 'cake' which she knew was wrong and just pointed to it instead. She can remember the word eventually but not when she actually needs it. While this only happens a couple of times a day she doesn't want it happening when she's talking to a patient, she's a medical sec, and hopefully it won't. Her job is demanding and she sometimes feels slightly overwhelmed, which she never did before, but I think it's good that she's managing as well as she is - I have my worries that as time goes on it may worsen but that isn't something I would say to her while she's doing so well.

 

[Fedup]

Freda

That is one of the worst things memory loss, it can be the seizures causing it to happen or it can be a side effect of the medication/medications you are on. It is very annoying and worrying when you notice it, unfortunately there is nothing we can do except write things down.

 

[gymrat827]

happens to me all the time.

I have a VNS implant, so my voice dies after 30/40 seconds of speaking. I often try to break at this point because i speak like the godfather once the VNS kicks in

But i fumble for words a lot, i am trying to remember a word to describe something or someones name in history, a movie, etc


I then just describe what i am trying to spit out and others pick up on it. I always say im sick and in bad shape with on the phone at work doing business.

Typical people will understand and blame my bad speech on the head cold or sore throat i blame it on.

My best accounts know my issues and i do not need to explain things. Over the years ive told them more and more.

 

[Freda]

I can understand how awful that is and I feel sad for my daughter for many reasons with this condition, it's taken so much away from her already and it's awful to see one of your kids suddenly burdened like that - wish it could have been me instead.
She had bloods taken today to look at her auto immune system in case her seizures are related to that and not true epilepsy. The bloods have to be sent to a specific lab for the testing and it will probably take a while to be analysed. It's a long shot but they have to rule it out, especially as her meds aren't working too well at present. She says she's heading for another seizure because she doesn't feel right and she was correct the last time she felt like that. I expect you all get to know the signs when a seizure may be around the corner eh?
Feel so bad for all of you knowing what I know about the condition now.

 

[Sabbo]

I especially hate the trouble that I often have remembering people's names. Sometimes I have a hard time connecting a name with a face until I've seen that person many times. It can be easier if there's something I can associate them with/with them.

 

[valeriedl]

I had a wonderful word loss event this afternoon. I wanted to ask a gentleman who worked in the gardening department if he could suggest a potting soil for something I was going to grow and if they had a certain type of potting pots that I wanted but couldn't think of the words. I kept trying to think of potting soil then I saw a bag of it on the shelf and pointed to it so we got that one but I still could't figure out potting pots. Finally after describing them and playing a guessing game with the gentleman for a few minutes he did figure out what I was looking for.

I especially hate the trouble that I often have remembering people's names. Sometimes I have a hard time connecting a name with a face until I've seen that person many times. It can be easier if there's something I can associate them with/with them.

I try to associate a persons name with something/someone. For example if their name was Nick there was a Nick I was good friends with when I went to school. Other times I might have a relative with the same name and try to remember it that way. I might also try to remember it by rhyming it with something. If their name was Brian then it rhymes with Lion.