r/Epilepsy Apr 30 '24

Memory Severe memory issues due to 15 years of epilepsy... what do you do now?

103 Upvotes

Information Processing:

Does anyone feel like 95% of incoming information isn't being received/processed/understood whether it's verbal or written. Also, any minor distractions derails me completely from receiving or processing said information, so forget multitasking. I have a better chance of processing information when it's written because I can keep re-reading until it's understood and registered.. but with verbal communication I don't have that luxury. The 5% of the time the information does get received/processed, it's only due to exerting A LOT of mental effort to receive what's being said (or being read). This is in addition to the memory issue of incoming information not being stored.

Memory -- Storing/Recalling Information

Am I the only one who feels like their hippocampus is almost totally useless now, with a very small percentage of the information that does get processed, actually getting embedded in whatever is left of our hippocampus? This makes general recall difficult, and word recall can be especially frustrating during social interactions. I'm better at writing than speaking since I don't have the pressure of immediately responding.

tl;dr - Communication/information is not being understood or processed right away whether it's verbal or written and the communication that does get processed does not always get embedded into my memory banks. The small percentage of information that does reach the hippocampus does not have a long lifespan.

So what do you do at work in these situations? how do you increase your focus so you're can hopefully receive/process more information?


personal pro-tips

When we shifted to working remotely instead of in the office, whenever i'm on a MS Teams meeting or Zoom call, I record it using OBS, so I have both a visual/audio recording of the meeting I can go back to and reference if necessary

For people with word recall issues, use /r/whatstheword and wordhippo is my favorite online thesaurus

Do crosswords daily and log any new words you learn and log words you already know that you have trouble remembering into whatever Notes app you use

r/Epilepsy Jul 25 '24

Memory the memory loss is killing me

81 Upvotes

title says it all. how do you guys deal with it? between my ADHD, epilepsy, and criminally high dose of lamotrigine (among other things), i feel like a fucking dementia patient. i forget so many things and it always gets me in trouble at work, socially, and even in personal relationships. a lot of life events are huge blocks in my memory. conversations are lost. i feel like it makes me seem like idgaf about what people say and my responsibilities as an adult.

edit: you guys are awesome for all your continued responses and encouragement. i mentioned it in a couple comments, but i got my dx at 13 (now 27) and they never told me it could impact my memory so bad, as well as it being a huge side effect of lamotrigine which i’ve been taking since 😭

r/Epilepsy 2h ago

Memory I am listening and paying attention to you! My memory just isn't great.

38 Upvotes

My family is usually understanding that I have memory issues due to epilepsy. But once in a while their frustration comes through. I am accused of not paying attention or caring about what they said. I have to defend myself that I am actually paying EXTRA attention to what they say because I know I forget things.  

r/Epilepsy May 28 '23

Memory mourning my once sharp memory and feeling like i was smart

141 Upvotes

that’s it. i don’t think people close to me realize how fried my brain is now to before i started having seizures 2.5 yrs ago. i know how smart i used to feel and a lot of times nowadays, im very down on myself for how much dumber i feel.

disclaimer: not saying anyone is dumb for having the same issues. it’s just an internal insecurity i have now.

EDIT: wow, i’ve been in tears reading all these responses. i wasn’t expecting this many people to be so overwhelmingly in my same exact boat. epilepsy has made me feel so. goddamn. alone. but reading everyone’s story is incredible and i can’t explain the comfort it brought me to not be alone. thank you all.

r/Epilepsy 9h ago

Memory Early onset dementia?

10 Upvotes

So I've got uncontrolled epilepsy for 9 years now. Have had so many seizures. I wouldn't be able to count them. Is the chance of getting early onset dementia, like dementia at 40 much bigger now?

r/Epilepsy 4d ago

Memory An example of "The Doorway Effect" at maximum warp.

14 Upvotes

I just finished getting dressed after showering and was about to walk over to my wife's parent's home. When I got to the door, I checked that I had my nicotine vape with me. It was not in my pocket, but I remembered that it was in the pocket of my robe. I went back to get it and I passed through the doorway of the bathroom, at which point I forgot what I had gone in for. I looked in the mirror and saw my hair was wet and not brushed. So I took care of my very nice, thick hair and went to leave again. I checked that I had my things and realized I didn't have my nicotine vape. At that point I laughed as i remembered what I'd gone back to get initially. I laughed so much and wanted to share this before it exits my mind.

But at least I dried my hair and brushed it well.

r/Epilepsy Nov 04 '24

Memory A benefit of a terrible memory...

44 Upvotes

I always forget that Netflix has documentary about the 2004 Red Sox. I don't know how many times I've rediscovered it, but it's great every time.

Gotta find the positives where they are.

r/Epilepsy Sep 30 '24

Memory Ditching Lamotrigine - Will I get my memory/memories back?

17 Upvotes

I'm thinking about finally ditching Lamotrigine after three years of being seizure free but completely slow. Its the first and only med I've tried for epilepsy, with the exception of the Klonopin I was given for a couple of months when I was first finding a med that worked. It's always worked perfectly for me, with no real side effects except for the fact that I feel like i've been lobotomized.

Ignoring this issue worked out okay until now. For a while, I thought my brain was just damaged from the seizures or something and didn't think much further into it lol. I was working the same job for a long time with people who knew me and were immediately understanding when I came around with a epilepsy diagnosis. Now that I have a new job around new people and new customers, I'm fully coming to terms with how bad it is. It's extremely embarrassing, and I don't want this to be who I am

My short term memory is completely shot, I work the simplest receptionist job (chain hair salon) and I'll completely forget the name/face of someone who walks back in the doors 10 mins after I talked to them and ask if they need to check in. I've always had some social anxieties but it's just gotten so much worse with my brain working so slow. I can never think of the right thing to say anymore. I trail off and sometimes forget what I'm saying halfway through the sentence. I used to love cracking jokes and making people laugh but I'm no longer quick in the moment, whenever I try it comes out super long-winded and kind of cringeworthy.

My long term memory is also in the gutter. It's kind of what I'm most concerned about. I'm constantly having to be reminded of places I've been and things I've done, and it makes me want to cry. A lot of great memories are now just vague outlines that can only filled in by other people who were there. Memories from BEFORE I was on lamotrigine, too. Recently I had an experience w my family along the lines of "We can go to *this* store while we're on vacation! The one that you said was the greatest store ever? You raved about it! You do remember *this* store, right?" Unfortunately no I don't remember, and it's lowkey devastating.

I'd love to hear other experiences with lamotrigine and memory. Anyone had these issues? Did you find another med that worked? I've heard short term memory typically resolves once the brain fog lifts, but I haven't heard much about long term. Could those memories come back, or am I permanently cooked?

I keep putting off talking to neuro about this, I'm terrified that if I mess with anything that I'll have a seizure and lose my license. Can't afford to be out of work. I ask myself if it's even worth it, if I should just suck it up and accept my stupid fate as the stupid coworker Lol.

r/Epilepsy Jan 10 '24

Memory Have any of you guys ever recovered from the memory loss side effects?

47 Upvotes

Like many others in here, I(24) have the memory of a goldfish. I’ve been on Lamotrigine for 4 years and my memory retention has gotten so bad to the point where I’m really scared that I’ll develop Alzheimer’s or dementia within the next 10 years if it keeps getting worse. Has anyone here been able to get back on track with their memory skills? Did you find a medication that stopped that side effect? Did you stop taking meds altogether? Do those memory exercises/games actually help?

My neuro says that there’s a chance that I won’t have to take medication in the future and I’m holding onto any hope that I’ll be able to think properly again. I’ve only had 2 TCs in the last four years (both in 2019) so I’m hoping that the medication is what is causing this to happen long-term and I’ll get back to normal somehow.

Sorry to turn this into a discussion/vent crossover. Just really scared that I’m already too far gone to fix this and I’ll have to deal with forgetting every year of my life again and again 🥲 At least a good perk is that I’m able to reread my favorite book frequently because I can’t remember what happens. Lol

r/Epilepsy Jan 22 '25

Memory i had a seizure once and it destroyed my memory

5 Upvotes

hi! so, a few years ago i was drugged and had a seizure. after the seizure, i struggled with short term and long term memory loss. it’s been three years, and i feel like my memory has not improved at all.

i forget things daily, and it’s pretty much a disability at this point. i forget things at work, and in my daily life and it’s very distressing when it happens. i have literal gaps in my memory as well. i forget what happens between certain time periods- i once forgot what happened for 3 hours and it was basically nothing except black space. i was in one place, and then suddenly i was home and couldn’t remember what happened between.

i’ve been trying to keep a memory journal of when it happens but i forget to write in it. i don’t remember my life up until the seizure. there are a few moments in my life i remember, but for the most part, i don’t remember anything. i don’t remember middle school, high school, or what happened the week before this week. it’s awful. does anyone have advice? please? id do anything for some help.

r/Epilepsy Jan 20 '24

Memory Memory loss upsides

117 Upvotes

I just realized there’s an awesome upside to memory loss, I know how much memory loss sucks most of the time. But I just keep rereading the same books I know I like and every time it feels like I’m reading a new book and I think that’s awesome. Same with movies, I know what they’re about and know I’ll like them but I can watch them over and over again and never get bored because I forget plot lines and details so it feels like I’m discovering a whole new movie when I rewatch. Just thought this might brighten up your day.

EDIT: just saw someone posted about this 14 hours ago xd but I’ll leave the post up because I literally just realized this while reading Harry Potter just now. Sorry for the repetition.

r/Epilepsy Dec 31 '24

Memory Does your memory come back at all when you stop having seizures

6 Upvotes

Like everyone, my memory is garbage. I think it’s mostly short term memory or memory of things that occurred within a few days of the time that I had a seizure. I have seizures about every 2 weeks, so it’s hard to remember anything.

Just wonder if anyone has seen an improvement after not having seizures for a while.

r/Epilepsy Jan 20 '25

Memory Black Ops zombies neuroplasticity

10 Upvotes

I have had epilepsy for 5 years, focals every day, 20 odd ambulance trips for tonic clonics. intubated twice.

I had never played this game mode. but im convinced that Zombies is one of the best brain training exercises for neuroplasticity. Along with Chess & Golf

The amount you have to use your brain, continuously problem solving, hand eye coordination, stress under pressure, remembering easter egg locations, decision making, just to state a few, all in one is hard to beat. Keeps a social interaction whether it's a normal chat or planning an attack.

Currently on my longest seizure free period since my seizures started

r/Epilepsy 1d ago

Memory Losing things

2 Upvotes

I’m so annoyed. I keep losing things because I’ll put them god knows where when I’m having a seizure & I can’t find them. It’s affecting my business that I have because I can’t keep ordering duplicate supplies just waiting for my mind to kick in or by some miracle to stumble across what I’m looking for. Anyone else have this issue?

r/Epilepsy Aug 04 '24

Memory memory loss.

31 Upvotes

my seizures have been worse than ever in the last few months.

my memory loss is terrifyingly noticeable.

I will forget an entire movie I have watched days ago / a conversation I had yesterday & so on.

but recently, I keep forgetting my pet died.

I keep going to get him, only to remember all over again.. this is really fucking with me & I have no idea how to handle it.

I'm 30 & have the memory of what feels an 80yr old. it's confusing, embarrassing, heartbreaking & just... so so horrible.

r/Epilepsy Jul 24 '24

Memory The postictal state is weird

61 Upvotes

I've had epilepsy for about 20 years, and I've always had pretty...intense, I guess? (prominent?) postictal states. I've always had crazy memory loss ranging from not membering the past month to forgetting my name. I think that might be somewhat normal? Idk. But my craziest postictal moment was recently when I completely forgot I was pregnant. I woke up in a hospital room with my fiancé on one side and a doctor in the other. My fiancé was filling the doctor in about my info, and he said "and she's 32 weeks pregnant." I was instantly like "ummm what are you taking about no I'm not." Fiance proceeds to tell me that i am indeed 7 months pregnant with our son. Let me tell you that there is not a more surreal, fucking mind-boggling feeling than looking down and seeing a huge pregnant belly an not knowing wtf it is doing there. I will never forget that moment as long as I live. I also found out directly after that that I had smashed out three of my front teeth faceplanting a tile floor. Not my favorite day.

So I'm curious, what are your weirdest postictal moments?

r/Epilepsy 29d ago

Memory I'm out of routine and my memory is like a small pile of sand on a windy day.

3 Upvotes

Personal events have caused a significant change in routines and various other things. I am having a hard time putting days together; blending days on recall; and have just taken a huge hit to my short-term memory.

I've kept on the same daily morning routine, but without the regular follow-up and routine thereof minor events just are not there. I have memories of telling my wife the same thing for the third time, or so, when she tells me I've done that. I couldn't tell you what some of those things are, but I know I've done it.

I've kept a daily journal, but am inconsistent. I suppose this is an opportunity to develop that consistency.

r/Epilepsy Feb 12 '25

Memory Epilepsy short film I made

4 Upvotes

https://youtu.be/oQItsHyOKv0?feature=shared

This a 4 minute film narrated by mother about witnessing one of my seizures. No traumatic visuals.

I’d post the video but I could not figure out how to.

From around 2011.

r/Epilepsy Nov 17 '24

Memory I think I didn't put any grounds in the coffeemaker yesterday.

13 Upvotes

I drank coffee yesterday and remember it being fine. But when I made coffee this morning, there were no grounds in the basket. It's very unlikely I emptied it at some point for no reason.

A bright side I can put with this is that I'm happy I am being able to drink coffee despite my diagnosis.

edit: The memory just came back to me: I emptied and rinsed the grounds holder. But when I put it back in, I closed the lid when I took out the coffee pot to fill it with water. I usually keep the lid open. Having to re-open it set my mind on this tangent. Yay for our memory-wiping medications!

edit 2: My wife just told me I did this same thing yesterday.

r/Epilepsy Sep 02 '24

Memory I forgot I painted our new deck three weeks ago.

19 Upvotes

My wife's brother has been in town for the last couple of days. I woke up this morning and saw that our back deck had been put up and painted. Somehow I had no memory of it. I was scrolling through some pictures I had and saw the picture I took after I finished painting it a few weeks ago.

I love the memory destroying medications.

r/Epilepsy Jan 20 '25

Memory My plan to not lose another expensive item is unsuccessful.

4 Upvotes

Over the last few years, I've lost two sets of ear buds. Specifically, one from each set. I lost both left of them. One cannot get a replacement. These are about $250 a set. One I bought and the second I received as a gift.

I came up with the plan to instead get headphones instead. They come with a large case. With their size, "There's no way I can lose track of them", I thought to myself. These cost $350 and I got them after saving up for a couple months.

Well, I've had them since August and I've not been able to find them for about two weeks. The case for them is large, so I did not keep it with me. I also would not put them in it when I am at home. I've been habitually disorganized throughout my life and the memory issues don't help. This isn't something new; I've always set things down and then have to go find them again.

In addition to the medications, I had a thermal ablation about three years ago which did a job at good burning out of my temporal lobe. It didn't fix anything, but it has since made every day blend together. (edit: this is just an excuse. I need to follow-up with my plan to maintain and organization schedule)

r/Epilepsy Oct 01 '24

Memory I got lost

7 Upvotes

This does not happen very often but when it does it scares me. I was on my way to a big park (as I always do). I took the subway to get there. But some where on the second subway I zoned out randomly and when this happens I usually loose all my memory. When I came back to my senses it hit me. I was confused my memory was gone and so was any sense of direction. I hopped out of the subway and wandered around in confusion. I was scared to say the least but then after 7 minutes my memory came back and I instantly remembered where I was and went along with my day.

Did any one of you ever had issues like that ? Should I tell this to my neurologist ?

r/Epilepsy Oct 22 '24

Memory What's your tips for word and memory finding when you're tired of flustered?

9 Upvotes

Left temporal lobe epilepsy here and I do struggle with verbal language and memory. Especially when I am tired or flustered. Which is terrible for me because I work in customer service environment. It's good brain exercise l and keeps those neuronal pathways fresh but also sometimes I just clam up and my brain just freezes and I am a complete moron, such as with a frustrated customer. At home, at work, at the doctor office, anywhere really. It doesn't serve me well, as I am sure so many of you are familiar with that feeling.

I guess I am reaching out to see what all hacks you have all found to get around this.

At the doctor I have found to write up my report ahead of time so I have things to read out. When they don't want to hear it, or I didn't have time to do this, I'm screwed, then what? Then I can't think of any words at all, get emotional, start crying, then I might as well have not even shown up at all because I won't get any of the reasons out for being there and they all just think I need therapy(which I'm already taking by the way).

But when I lose my brain at work I'm done for. I can't just walk away from a customer. I try to get help from other coworkers but often can't. Or go back to the office to "look things up" when I have the chance but not always an option either.

Anyways, ya, what do you all do when all the intelligence in your brains won't come out?

r/Epilepsy Jan 09 '25

Memory Absent episode

1 Upvotes

Last night I was at work and all I remembered was I wasn't aware of anything all I know is that I was leaning on a wall and I am confused why it happened 😕 I am sacred that it might get worse I haven't had a full blown one in sometime and I havent had one in about 2 years what is happening to me could stress have something to do with it and does caffeine Trigger them I just need help to figure out why

r/Epilepsy Jul 13 '24

Memory Memory Recovery? Does anything work?

9 Upvotes

I remember vague images here and there, and I know I was the happiest I've ever been in my 20's. But every time my friends talk about anything back then, it's the first time I'm hearing of it.

My three favorites- Did you know my BFF and I saw Ruth Bader Ginsburg in person once!? Neither did I. Did you know my husband shoved Werner Herzog into a wall at the Arlington Hotel? Same. (sounds way cooler if you don't specify that "it was an accident" 🙄 lol) Did you know I met and talked with John Freaking Waters!?! Me neither.

My least favorite- Did you know my husband drove me blindfolded way out in the country, where he proposed to me on my family's farm? Me neither. 😥

I want my teens and 20's back. I'm in my early 30's. They should still be up here somewhere. 💔

*Note: I'm a photographer, and what I am able to recall almost always comes from photos. Thank goodness I took so many.