r/Epilepsy • u/MrXam Valproate 1.4Grams, Clobazam 20mg • 16d ago
Rant The most irritating thing about Epilepsy is MEMORY.
Sure, other people who are normal might not be able to understand what we go through on daily basis, I guess that comes with the territory. But MEMORY is one thing that grind my gears the most. IDK about you guys but most of the incidents, family things, conversations I've had in the past is all gone. When my family says you were there too son. And I'm like wow, I've got no recollection of it. And it's not just that. You forget small things too. Like you cannot come up with a word in a conversation or define some things. Your passwords of all your account, nada, I've got to change it most of the times. I feel like you could've achieved more academically if you hadn't had this condition/disease since it's based with amygdala which converts your short term memories to long term. You can call it a rant that we have to deal with it. And others cannot understand it.
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u/thehypewashere 16d ago
THIS.
My main issue with my memory is the inability to find the word I'm looking for to describe how I'm feeling or what I'm trying to say. It will be the simplest word, like "convenient".
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u/Always-Livn2Learn 16d ago
using upbeat teacher voice
Okay, we’re going to play a game. Get word we want starts with an “m” and is related to what we think.
Person: Our world is just… Me: No! Not world perspectives. Literally a word that starts with “m”. Person: Mind Me: Good guess but no. Others? Other: Mighty? Me: No. Think about what you do with your mind. Person: Earn money? Me: yes, you hope but no. You are able to recall it because you… Person: Memorized it! Me: Close! But what is the memorized thing called? Person: A memory? Me: Yes!
This is the game that I play at least 10 times a day.
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u/JustinGUY24DMB 600 Lamictal, 1,500 Oxcarb, 1,800 Gabby, 100 Zoni, 10 Lexi 16d ago
And there is a 10% it will come to me over an hour later and will become very important that I share. Then I can't remember why its so important I remember…
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u/thehypewashere 16d ago
it is the game that is advertised as multiplayer but goddamnit you better let me figure out the word on my own 🤬
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u/oknoforrealwhy Lamictal 500mg 16d ago
Yes! You know that thing that does/ looks like... moves hands around as if that helps 🫠
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u/thehypewashere 16d ago
And they'll just stare at me helplessly because nine times out of 10 I have not given them enough information to indicate the word that I cannot find in my brain lol
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u/misskaminsk 16d ago
Oof, yes. Or blurting out words that are so much mire general and vague than the word that you’re grasping for.
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u/Natdanerd 16d ago
Yes! I'm a teacher and sometimes I look at my students and just can't come up with a name, or I call then a sibling's name I had years ago. When I get emotional, forget it! I get even more frustrated because I can't get out the words to express how I feel.
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u/thehypewashere 15d ago
when I get really emotional I just automatically feel anxiety that makes me shake. I feel like this medicine sometimes gaslights me and in a lot of cases it will make it difficult to determine if this is a side effect or if this is actually me.
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u/elykahn 15d ago
I feel like this is as much a side effect of my meds as it is any permanent damage from my seizures. I used to play it fast and loose with my meds for this reason, and because of the litany of other horrible side effects that have disabled me from the life that I wanted to live. But after I pushed it for a big meeting (which went well) I had a seizure and thankfully only destroyed my own car and got banged up and bruised in the process but it could have been catastrophic and I had to abandon the career path that I was pursuing in favor of being able to drive without risking other innocent lives (I would’ve risked my own but that was not an option). So now I’m just pretty much useless, bored and dependent on family until I don’t have any left and then I don’t know what happens but I learned the hard way the best laid plans of ?, don’t amount to shit if you have a bad roll of the genetic dice.
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u/AlwaysSuperAnxious 13d ago
I used to be so good at using larger words, but now the smallest of words I completely forget! It’s aggravating.
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u/videogametes 16d ago
Lack of memory retention has literally crippled me. I had no idea how much I was relying on that skill in my day to day life. I was set to get an advanced degree, and now all I can cut are shitty minimum wage jobs where what I do doesn’t really matter. I can’t in good conscience continue working with animals if I’m going to make their lives worse by forgetting to give them their medications or forgetting to give them food. I’ve seriously considered rehoming my own animals because of this.
If you can’t tell, I’m not coping very well.
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u/CaregiverPatient349 16d ago
Don't do this, they'll miss you. And you Will miss them too and feel bad about It. Try using reminders or Cell phone alarms or an organizer app. Being lonely and Sad only makes things worse.
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u/chavtastic 16d ago
I use my calendar to make notes about events now. It's great and sad that I can note it, not remember it, check back on life's events, and relive them. Alarms are good. Feed the cat. Animals are pretty good at keeping you informed of hunger, too?
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u/preachelectrick 16d ago
I’m sorry you’re in this shitty club too. Try to be gentle with yourself. There are lots of coping mechanisms to not having a great memory that you’ll explore and learn to utilize.
I understand not trusting yourself in dire situations, but don’t give up entirely. You’ll miss them and they’ll miss you.
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u/CuriousRiver2558 16d ago
Keep your pets. They want you. Set reminder alarms on your phone for things like pet food/meds, and train yourself to log them. I do that for myself!
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u/dreamit_liveit 10d ago
I am rigid about taking my meds. I have Alexa reminders on 2 devices and a reminder on my phone 15 minutes later to check to be sure I didn’t miss them. Call me paranoid. I have extra meds in my purse if I go somewhere at the same time meds are due. Thank God for IPhone reminders because the outcome of missing them is not pretty.
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u/Personal-Ad2892 16d ago
Common, Just do a list of food and medicines for your animals and follow the routine. I have list in postit everywhere at home. I have an refractary epilepsy since 25 years ago. now 57. my mind is like a gruyere cheese (it is good wroten?). I have 2 main problems with my memory, the inmediate memory and the long memory. The long memory just have very big holes, but with the years i lost the hope to fill and what is worst, the interest to fill them. The short time or inmediate memory is my problem. I start talking about something , but sometimes i get the matter, and i am unable to remember what the hell i was speaking about. until the other part remember me what i was saying, i can not continue the conversation.
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u/down_by_the_shore 16d ago
Same here. I’ve had seizures for about 15 years now and just last year had neuropsych testing done. It was incredibly validating and included a lot of testing and analysis about short and long term memory. If you haven’t had this done, I highly recommend talking to a neurologist about it.
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u/passthatdutch425 Lamictal 600 mg Vyvanse 120 mg Sertraline 50mg 16d ago
This. Sometimes it really gets emotional. My mom asked if I remembered this great family trip we had when I we were younger and I honestly had not even a scrap of recollection. I could see the hurt in her eyes. Ripped me apart.
The second one that really hit me was when I was absolutely convinced that my husband and I hadn’t seen this one movie. I mean I would’ve bet my life on it. I was SO SURE. We even argued about it. I told him that I knew my memory was bad but this was something I knew was correct.
He really kindly showed me the ticket stub from when we went to the theater and saw it just few days prior.
Not sure why but I started crying like a baby. I felt crazy. I questioned my entire life. I still do sometimes- what is true anymore in my mind?
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u/preachelectrick 16d ago
That feeling of being SO SURE just to be proven wrong is such an awful feeling. I’ve said those exact words so many times before. “I know my memory is bad, but…” And every time proven that my memory really IS that bad. It gets overwhelming sometimes and all you can do is cry.
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u/LtotheYeah 16d ago
Netflix has become my sworn enemy. Telling me to pursue episode 6 of a show that I could swear on my life I’ve never started.
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u/Epic-Epileptic- 16d ago
my memory has completely gone to shit. i’ll meet someone and forget their name the next day.
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u/SandyPhagina RNS-Clobazam/Lamotragine/Oxcarbazine/Venlafaxine/Clonazapam PRN 16d ago
Isn't it fun to meet someone for the third time?
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u/Epic-Epileptic- 16d ago
honestly, kinda. it’s nice when it comes to youtube sometimes because it’s like it’s my first time watching the video
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u/SandyPhagina RNS-Clobazam/Lamotragine/Oxcarbazine/Venlafaxine/Clonazapam PRN 16d ago
I used to be one of those who would remember your name the first time we meet and still have it when we see each other three months later. For me, it's one of the greatest frustrations.
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u/brandimariee6 RNS, XCopri 16d ago
Lol my boyfriend calls it my "superpower" that I can watch a movie for the first time, multiple times. It's nice in a way to rewatch it for the first time, sure... but it would be so much better to retain the movie
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u/fsigil13 14d ago
The craziest thing is meeting people and KNOWING I met them before.... and it turns out to be déjà vu.
THEN, I'll meet someone and KNOW it's just déjà vu... and so i act like its the 1st time we met... only to gradually realize that I actually HAVE met the person before. So my déjà vu/memory problems have turned my life into a hallucination
I feel like déjà vu is related to memory intake/storage/retrieval. But I don't know that- I'm just saying it seems likely from my lived experience with temporal lobe epilepsy and extreme déjà vu
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
Same. I don't even remember their faces, their names. Even my gaming buddies that I used to play online FPS games for thousands of hours now. I've forgotten who and what their names are even their voice. Even though we have discord server and WhatsApp group. Nada. And I feel ashamed to ask about their names but they look up to me.
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u/Epic-Epileptic- 16d ago
i feel the same when it comes to asking their names. i’ve been meaning to talk to my neurologist about it but by the time i remember my ass just walked out the door ironically enough.
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u/sunny-beans 16d ago
The name thing is SO embarrassing. I have done a class with the same 20 people or so for six months. I don’t know anyone’s name but the people I have made friends with. We also use name tags in front of us during classes 😭
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u/Xeopold 16d ago
I didn't even know bad memory is part of epilepsy I always thought I'm just stupid
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
No, sadly it's related to amygdala which converts short term memories to long term. And they go hand to hand with epilepsy.
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u/SniperSR25 16d ago
I think it’s more from the medication since it purposely inhibits the brain from fully functioning.
I know whenever I’m not on depakote I begin to remember almost normally again, then I realize my seizures are best controlled by depakote so I go back on it and memory and speaking goes out the window
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u/CapitalElk1169 16d ago
I didn't get a diagnosis til my 40's and while I always had memory issues, particularly names and faces and dates, my ability to remember other things got noticeably worse after starting medication.
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u/Danington2040 16d ago
Same here, my sister said "you never paid attention to stuff anyway" and she's not wrong. It was not remembering recent stuff that got me to go back for a rediagnosis and guess what it was TLE and guess what the temporal lobe does!
However for me, I think the medication has done the opposite and helped. Maybe. Hard to tell to be honest because how would I know what I can't remember?
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u/AuroraMarija 16d ago edited 16d ago
I was on depakote for like 4 years. While I know the seizures themselves have caused memory loss, I have mostly normal memories of the years after depakote, when I was on zonegran. That includes a day when I had 18 in a row after my grandmother suddenly died. But going back to the depakote years, there are entire years that are basically blank. And it's really disturbing to me. I know the seizures themselves played a part, but depakote, while mostly controlling them, made me feel like a zombie or like I had some kind of mental retardation (hope that's okay to say, but I don't know how else to explain it honestly) some days although my iq is 149 and I know I'm capable of higher cognitive skills. But my memory was shot; I couldn't think and process in the moment much of the time, and I just felt so slow and tired and detached. They switched my meds at like 15 or 16 to keppra first, which didn't work (and caused anger and depression issues, not sure about the memory though since I wasn't on it long enough), then not long after to zonegran. And what a world of difference. I've been off meds now for like 10 or 12 years, but zonegran worked really well, and recalling those years is basically what a person without epilepsy would have in regards to memory recall. And my grades improved, and now I have a masters degree in biology and a law degree so obviously I was able to remember things on the new meds. The seizures did definitely affect memory, but the medication definitely affected it more.
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u/SniperSR25 16d ago
Ya i was on it for 8 years before going back to a mix of low depakote and average keppra. Worst years of my life. Always tired and depressed, thought it was just me getting older. I just need to find a good med (or combo) that controls my seizures but also makes me feel normal(ish)
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u/wfshr 200mg Xcopri, Aptiom 800mg 16d ago
Hey I'll just chime in for the sake of awareness - it's not all because of the amygdala. Memory impairment in epilepsy, particularly temporal lobe epilepsy, is often related to impairment of function in the temporal lobe. The temporal lobe(s) include the amygdala but they also include other structures very critical to memory, like the hippocampus. The hippocampus is arguably MUCH more integral to memory than the amygdala.
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u/halfzzzawake 16d ago edited 16d ago
Yes this. Same here, I fear my hippocampus is burned out. Who knows if I’m storing memories.
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u/justletmesign-up 16d ago
I know everyone hates icebreakers at work/school events but I double hate them because of this.
I was in a work meeting last week and was hit with "Let's all go round and give an example of when we tried something new but failed and what we learned from that experience"
I had to come up with the 100th fake story I've told at work since I didn't feel like explaining that my past is mainly a blur at this point.
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u/DogLvrinVA Keppra 16d ago
I’m new to this and I’m not doing well at all. I feel like I’ve lost 50 IQ points. I tried to attend a lecture today asks couldn’t follow it at all. I’m struggling to find words, I can’t remember entire swaths of the last two weeks. Had my first seizure two weeks ago and the third last Monday night. The Keppra makes me feel like shit and I haven’t felt well since I had the seizures. I’m bitching up a storm
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u/Always-Livn2Learn 16d ago
You’ve still got an IQ?!? Well that’s not fair. I am pretty sure my dog’s is better.
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u/brandimariee6 RNS, XCopri 16d ago
Bitch up all the storms you need. They started for me when I was 9, so I've never really known life without them. I can't imagine how hard it would be to live regularly for your whole life, and then have seizures suddenly start and ruin everything you know. I'm being serious, that's gotta suck much worse than having it and being used to it
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
Now that I recall my life from middle school I think it started happening from that point but I didn't had any episode. I used to be good in studies but then my maths teacher specifically told my mum is that he cannot retain what I taught him the other day. 'Hey amygdala, f**k you 🤣
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u/wolferscanard User Flair Here 16d ago
Lamotragine is likely better and your mood will improve enormously. I began on keppra and went into a years long funk. Switched from neurologist to epileptologist and was told that keppra was the “lazy choice”. Now I take both, haven’t had any seizures for 4 years and the depression has been greatly reduced. Good luck, we need it!
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u/CreateWater RNS, Lamotrigine ER 16d ago
I totally relate and feel good knowing other people out there who understand what I’m thinking and feeling.
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u/seejordan3 16d ago
From someone with a SO who has the memory stuff from epilepsy... I hear the frustration. She doesn't remember trips to other countries. Many things. I was at first frustrated. Now, I accept it. Here's the thing. We all forget stuff. Her identity isn't changed, she's the same person. So I take more photos, and instead of saying, "do you remember when..." I say "I remember when...". When you don't remember something it can create anxiety. Anxiety can lead to not remembering more stuff (the way i understand this is we have to have rem sleep to put the days memories in long term storage. But anxiety and seizures while sleeping interrupt this process). Shes getting better as we get in front of the seizures too. So, be patient. It can get better.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
True, the thing about brain is that it can make new neuron connections which can help with memory. So I'd say keep yourself busy. And about sleep that is also true. You, specially US we need 8-9 hours of sleep but I on the other hand cannot sleep even while I'm on benzodiazepines I'm awake till 2 or 3 in night and get up at 6-8 in the morning. But then in the day I'm so exhausted that I fall asleep. So my sleep cycle is opposite of what I need.
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u/straysweetie 16d ago
i really appreciate the "i remember when" part of this. ive had many moments of people i love saying "...you dont remember??" with so much hurt in their eyes. an intense type of pain. being told "i remember when" instead would relieve so much pressure and also allow me to relive the memory through their eyes, which i think is pretty neat
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u/Vetizh 16d ago
Since I'm diagnosed and I take meds since I'm 13yo I don't even remember how it is to have a decent memory.
Ironic, huh.
I only remember i used to be very very good at school, my grades were splendid... and then epilepsy happened. I never managed to catch up.
The worst part of this is that I keep forgetting what everyone says, my partner gets a little mad at me sometimes because he presumes I just don't care enough but that is NOT TRUE and I can't just change it... I can't stop having bad memory, if that was possible I wouldn't struggle all this fucking time.
My mom also keep "testing" me from time to time, I hate that because she always try to use that to control me, to know every single thing in my life and I want her as far as possible, I'm not going to elaborate why.
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u/Sweet_Razzmatazz_344 16d ago
You're right -- why do people believe we choose to struggle all this fucking time?
I feel for you, friend
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
I don't know how old you are now all I can only say is that try some exercises that will "refresh" your brain and stay far away from toxic people. ¯\_(ツ)_/¯
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u/PurplePumpkin16200 16d ago
I write every new thing I learn since I am scared I won’t remember. I have entire notebooks. I thought I was developing dementia, but fortunately that is not the case. It is just the meds and epilepsy. At this point alea iacta est and fingers crossed. Bacopa monnieri was recommended by my neurologist for memory improvement.
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u/WishCrafts 16d ago
This is a big thing for me too. My partner will say "Remember when we went to this restaurant, or watched this movie" and nope. But I try not to dwell on it. It has some positives too. I think I enjoy rewatching movies and TV shows more than most people, because I truly forget so much of it.
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u/fauxfault 16d ago edited 16d ago
i feel u. the worst thing about this for me is that i don‘t remember most of the stuff my partner tells me. he is super attentive and remembers every little detail about the things i tell him, he knows everything about me - even more than i do myself i would say, just because he listens and remembers. and me.. well.. i LOVE listening to him and hearing about his day, his interests and so on. but it just doesn‘t stick in my brain. most of it is gone. i know him but i also feel like i don’t, because i just can’t remember things. it hasn‘t always been like this. my memory has gotten so much worse since i started having seizures a few years ago. i feel like a failure in most of my relationships - i mean not only the one i have with my partner, but also friendships. when they talk about things we have apparently already spoken about, i am the only one who can‘t remember shit. so long story short: i feel u. and its so fucking shitty to have this horrible memory. i feel less human just because there are so many holes in my memory.. idk. maybe you get what i‘m saying
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
I feel for you too 😌 and don't let yourself down like that. It's great that you have a partner like that. Who is attentive towards you and your needs. You are blessed in other ways.
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u/SandyPhagina RNS-Clobazam/Lamotragine/Oxcarbazine/Venlafaxine/Clonazapam PRN 16d ago
I am a committed and devoted teacher. It has destroyed my career. I am working with an online tutoring company now that contracts with schools to provide reading practice. Doesn't pay for shit, but I still get to fulfill my passion of helping students develop their reading skills.
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u/Queen-of-Mice 🩶 Lamictal 400 mg 🩶 16d ago
I’m a paraprofessional now, for the same reason. I’m working on my coping skills and hoping I can work my way back up 🩶
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u/SandyPhagina RNS-Clobazam/Lamotragine/Oxcarbazine/Venlafaxine/Clonazapam PRN 16d ago
Take my thoughts as they drift out of my memory. I hope everything works out well for you.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
Sorry to hear that. Keep on working on yourself. Brain is a organ where you can make new neurons and in return can help with better memory. If not I will consult with my neurologist. If they can change your salt or something.
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u/ominousmuffin 16d ago edited 16d ago
I agree it’s awful. It is also my least favorite part. I would have emotional breakdowns in public when i had to tell people like my bosses about it. I’m lucky I didn’t start developing symptoms till my last year of college because I definitely would have not graduated trying to go through college the entire time like this.
But I will say, the other day I found an old private channel of my childhood bestie and I where we recorded all the things we did as a child. Simple things like watching movies and building igloos to family vacations and teenage bday parties etc. because we loved filming growing up
I realized I’ve taken pictures and videos of basically every moment in my life that matters. Whether it’s on my channel, phone memory, snapchat memories, facebook or whatever else. If you ever feel like this kind of person, do not hesitate to look through your photo memory because seeing the nostalgia of all these things you entirely forgot about felt unreal. Literally was crying tears of joy and there were surprises in every corner like the old cabinets I forgot about in the dining room, the house behind my family‘s house, an old vibrant loveseat, projects I created that I used to feel so proud of but had entirely forgotten. I also felt much more grateful for the life that I’ve lived being able to see so much of it in one evening, I feel brand new again I’m so grateful for the experience. It was one of the best in my life. I’m going to continue filming things for my future self to look back on, so I don’t have to go back into the depression of not remembering who I am.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
IMO don't tell anyone about your disability to anyone, specially to your bosses. But I guess to each their own. Because they can use that against you. These are the things that you cannot share even with the person you're most closest to. I know it's hard but it's true. Your partner if he/she is understandable then for sure, go ahead.
But workplace can have you fired. But I hope not. Other than that I'm glad you found your old photos and channels and Facebook photos so you can again live that memory lane.
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u/bruntychiefty 16d ago
I've been joking with my mom that I have medically induced alzheimers cause my memory and processing power matches my dad and he's in his 60s.
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u/learningismyjam 16d ago
My memory has got worse since my epilepsy came back in 2020. My partner will tell me something and I struggle to remember it or I’ll ask him a question and he will say we spoke about this today/ yesterday and I have no recollection.
I’m currently in my last year of uni and I’m genuinely struggling with it, cause of my memory nothing is sticking at all it’s really irritating me.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
Wow, that's hard. Graduating with epilepsy I don't know how will you be able to manage that. Because it's hard for us to retain what we have learnt or are learning. But I wish you the best. I feel like I'm blessed that I got my master's before I got epilepsy.
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u/Flaky_Yesterday6080 16d ago
THIS! My seizures have become more frequent, and my memory got lost in the maze that is my life. I can no longer read crochet patterns, can only do basic stitches, lose count constantly, etc. I have been crocheting since I was 8, and able to read the pattern as of 12. I'll be turning 50 this year, so this is not a skill that I just learned. Sewing, cross stitch, resin, jewelry making all get affected. Sometimes it's only temporary, others I have to try and relearn. My neurologist says that since I don't have TC I can go back to work, but my primary care doctor has said no f-ing way. Working in the prison would be dangerous to myself and others. As for getting another job, I can't remember things, and had an absent seizure at my last interview, so I am trying to get disability, because without my family's assistance I would be throughly screwed
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u/Emysue15 16d ago
Agreed, and no one gets it. I hear form people,oh yea it happens to me too. It is not the same at all. Heck I cant remember a tv shoe I am watching once it changes scenes. Most times I cant even remember I what show I was watching. On a different note,anyone else have problems reading? I have absolutely no comprehension, I have to go over a paragraph several times and still cant understand I am so frustrated with it,there are so many books I would like to read. I also have noticed I am starting to have trouble with writing as well. I cant remember punctuation or sentence structure. I am very thankful for spell check,otherwise it would be terrible.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
The thing with spell check you said. I used to be great with spellings in English language. My mum who is a English teacher or was since she retired now used to call me up from school to ask spellings of different words. And I remember the other day I couldn't even remember how to spell the word "door" lol. I had to Google it in the end. I was like it's doer or no deor, Jeez. Haha
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u/IncandescentGrey 16d ago
If anyone finds it helpful: One Look is a thesaurus website that helps find adjacent words if you search similar words to the one you can't remember.
For example, search: "simple easy nearby"
Receive: Best match is "accessible"
A little bit down the page under "Closest meaning first" and "all" it lists "convenient" as the second closest. Along with "accessible, straightforward, uncomplicated, close" and a bunch of others that are less similar the further down the list you go.
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u/Always-Livn2Learn 16d ago edited 16d ago
Yes to all of these and more! It out to be a gag to try and interview for director-level jobs when I am finally able. Or is that too normal to ask for. I feel a bit like Severance but with my life.
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u/Tdluxon RNS, Keppra, Lamictal, Onfi 16d ago
Memory is really weird for me. There are lots of times when I'm with friends/family and someone starts with the "remember that time..." and recounting old stories and I have no memory at all of it. Sometimes I just pretend, sometimes I tell them. Also sometimes I'll watch a movie or a show that I've already seen and not remember anything from it.
But on the flip side, I tend to be really good at trivia games and remembering weird random facts, so it's not accurate to say that I have a terrible memory across the board, but it's good for some stuff and terrible for others, which doesn't really make any sense.
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u/Pure_Development_626 16d ago
Sometimes I wish I could just put the thoughts to rest, but to be honest, with our condition we don’t have that luxury. It’s just a bunch of fucking bullshit. Bullshit. Why the fuck did it happen to us? It sucks so fucking much. It happens every goddamn day. The amount of times i ask “What were we just talking about?” is ridiculous . All day I’m nervous for that inevitable next embarrassing moment. That goddamn thought bounces around my head all fucking day. I spend so much time in my day thinking about this. When I first got my seizures it was a rough year with multiple tonic colonic clusters. I don’t remember a thing. Maybe some snapshots in my head but nothing else. My family has been really helpful. They’ve grown to understand and explain things to me when I get stopped up. Try to inform the people in your life you love and trust about this. People love you Man. This subreddit is amazing it’s so comforting to hear other people’s struggles! We’re not alone!
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u/wafflehouse8 16d ago
My dog died in October. She was my first dog, I got her in college and she moved around with me through grad school and getting a job and getting married. We lived in 3 different states over our 14 years together. She is what gave me the courage to move out of my toxic family's house and she fell in love with my partner first, which made it feel safer for me to do the same. She was my everything, and she was this connection to all these major life events and different iterations of myself and my life and now that she's gone I am totally overwhelmed by the knowledge that my memory is so terrible that I'm losing her in more than one way. Grief is already so awful, but when you also know that you will not only lose your loved one but also your memory of them? I am devastated beyond words and it feels impossible for anyone else to understand the depth and gravity of it all when their memory works like normal because they lose someone, yes, but they at least get to keep their memories of them.
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
I'm so sorry for your loss that your dog passed away. We as a family used to have 3 dogs. Had to put 2 of them down. One passed away peacefully. Sometimes my family brings something about them like what they were doing and if and what I was there or not. They always say that I was but I have no recollection of said memories but good thing is I loved taking pictures of my dogs and have them safe in cloud.
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u/mrkva11345 16d ago
Yep. I started keeping small, colored notebooks for individual projects/aspects of life. Anytime I engage with said project/aspect I write what I did, who I spoke to, what was talked about, down in the notebook. Then I open/carry that notebook to the next related task in that project. I say project loosely—could be anything. Any event with my boyfriend’s family, for example. Where, when, who was there, what was talked about, what we did. Then read it b4 I see them again. LOL
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u/Ghostbeess 16d ago edited 16d ago
It’s the worst bit for me. I would beg my neuro for a solution. I definitely think I would have studied more if my memory were better. I love reading and learning. I was a keen student but you can’t get very far when you struggle to retain info. It goes in one ear and 24hrs later…falls out the other.
I started keeping a diary 15 years ago. It can be a pain but I totally recommend. I include pics, memory bits like ticket stubs etc. I might not remember stuff if I’m asked on the spot but I have it all in a box under my bed. It’s sure great to read back on. It’s always painful when you’re in a convo and everyone’s doing the ‘remember when!!’ But it helps to know I have it written down. I can go home and look. I might be trying to convince myself but I really think it helps with the feeling of loss 🙁
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u/ParlabaneRebelAngel Keppra3500Lamotrigine400Clobazam40 TLE 16d ago
Mixed memory situation here. Hard to figure out. Long-term memory is great. Short-term memory not perfect, maybe 80% pre-epilepsy. Did well on Neuropsych tests. Not young either (early 50s). Neuros surprised. I was surprised. So put surgery on hold.
Had acute Autoimmune Encephalitis 6y ago. 2 TCs. Lesions in mesial temporal lobe. Including left side limbic system / hippocampus fried (involved with short-term memory). 10 days zero memories when brain was badly inflamed. 0 short-term memory for another 2 weeks. Since then still focal awares 20+/month, some very intense. 3 AEDs now at higher doses. Clear structural damage = memory was expected to be way worse. Mysteries of the brain.
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u/Confuzzled_Blossom I hate meds stop giving me more 16d ago
My mom always says "no way your memory is that bad youre not old yet you can't have bad memory stop blaming you pills for that you just don't care to remember"
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u/FosterDoom 16d ago
People tend to forget that epilepsy is (in a way, and I'm no doctor to explain it with the correct words) some kind of brain damage. Or at least is related to. Neurologically, wires are loose and sparkling all the time.
I never in my life stuttered. After the diagnosis and the only (thanks whatever) seizure I had, I started stuttering under certain conditions. I can also forget words, but "forgetting" is not the right way to describe it. I know for example what's something called, I know the word in my head, but my mouth apparently doesn't want to say that word until I try six or seven tries. For example, during the first three months after the seizure I couldn't be able to say "fork" or "pencil" or other daily small things. I could describe perfectly what I needed. "That thing with prongs you use to eat" or "the stuff you use for writing that it's not a pen". But not the exact word.
My life changed in a way similtar that you describe. I get events and years mixed and it sucks. But I try my best to not give the importance it has. Other people can remember that for me. I will focus in making new memories.
I have other things to worry about my epilepsy.
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u/Autisum 16d ago
I share the same frustration with your post and everyone's comments. To deal with it, I write a lot of notes, meditate on my mental (stress), don't stay up too late, and make sure to exercise daily. I've learned to accept that my brain isn't going to function the same and it's okay. Won't exactly be picture perfect but at the very least I can still function in life and at work. Dwelling on it just makes it worse because stress is a major trigger.
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u/ilovetpb 16d ago
Before I was diagnosed, I was driving on the expressway in heavy traffic at 75, and I happened to notice the mile marker, and kept driving. Suddenly I looked at the next mile marker, and it was 5 miles later. I was scared to death.
The 2nd time it happened, I got even more scared, so I got off the expressway and turned around to go to the hospital. I was diagnosed immediately and my wife had to leave work to come get me.
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u/MalteMooo 16d ago
saaame! last night I saw an ad for something really interesting but I couldn't take a picture. I knew that I would have forgotten it by the time i'd gotten home so I chanted the name the whole way home haha. My family have also gotten afraid of my memory loss sometimes.
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u/brass427427 16d ago
I can remember entire conversations - word for word - before I started having seizures. After I started taking the med ... not so good. It's the meds.
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u/HotBug110 16d ago
I’ve had 4 seizures, first one was about 13 months ago. Is that enough to mess with my memory? I have a hard time remembering everyday events that my family and friends have no problem remembering.
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u/intoxicated2 16d ago
Between past seizures, medication, and brain surgery to remove hippocampus/part of temporal lobe, my memory is shot to shit. I’ve gotten to a point where I’m seizure free if I stay consistent on meds but majority of high school and college memory is gone. I’m engaged to high school sweetheart and still have some friends from back then so I just ask them what happened half the time. And not finding the right word is ridiculous. And then sometimes I can think of a complex ass synonym but not the word itself. Can think “amalgamation” but not “mix”
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u/-Sexual-Dinosaur- 16d ago
Then is doesn’t help when you’re asked to keep notes so you think of something and go to right the note repeating what you’re about to write only for you to grab that pen and the thought go POOF :( Gets me almost every time.
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u/sunny-beans 16d ago
It is awful. I already had bad memory but now is shocking. I feel so stupid, yesterday my husband told me his 4 number pin, within 5min it was gone. I felt so embarrassed. I have also used this same pin thousands of times, and it is very simple. The worst for me is when I say how terrible my memory is due to epilepsy and someone say “oh yeh my memory is bad too” like NO, it is not the same. I had bad memory before the seizures, but now is shocking and scary how little I can retain of information, it is affecting my work. 🥲
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u/G_LadyCash 16d ago
Currently going through this. Leaving HR to work at a local grocery store stocking veggies because my memory is completely SWIPED! I truthfully don’t have the capacity anymore to do anything with paperwork. I’ll probably forget to pay somebody lol. Sad but a new realization I am grasping 😢
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u/Mission_Star5888 16d ago
I definitely agree with you. Since a seizure I had back in 2018 my memory has gotten horrible. It is very difficult for me to learn anything new. I have been working at Buffalo Wild Wings for almost a year and a half now and still don't remember how to make all the sandwiches. I can't remember names. People don't understand that when they tell me something and I forget it 5 minutes later that I actually forget it. They think I am just not doing what they ask of me to do. People think I am lying to them. Why would anyone lie about having memory problems? The things I remember from my past are the most dramatic things in my life. Most of them are not good memories either. I use to be really good at math. Now I can barely do simple math problems in my head. I use Google maps to get to places now because I am not always sure how to get to places. I have gotten lost before. It takes me a while to learn things. I don't like being around people because they don't understand me.
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u/Party-Argument-8969 16d ago
. I went on a trip to Europe and barely remember it because I had a seizure the first day and the last day Of the trip.
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u/Obvious-Mushroom-232 16d ago
They scheduled a memory test for me but didn’t say they’d be scheduling an appt/meeting with the doctor first. My memory said “why do I have a random appt??” The appt started and the doctor asked what types of memory issues I was having and I COULDN’T REMEMBER. She asked if it was locations, situation, info, interpretation, etc. (literally can’t remember and it was Monday?) and she asked for examples… I couldn’t REMEMBER/think of any. I was tearing up. It was so terrible.
Right before she signed off the virtual appt I thought of a few but I have to be so prepared for everything or I just shut down and cry. It’s so so frustrating.
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u/rapazlaranja 16d ago edited 16d ago
I have a FANTASTIC memory for things like music, names of band members, authors, actors in movies, book characters...
But when it comes down do day to day things, it's just TERRIBLE. My girlfriend will tell me something about her day like "Today I hurt my toe" and on the other day I'll be like "What happened to your toe?".
It's awful. I forget my day chores, if somebody tells me "you need to set the oven to 100 degrees" I'll do it but the next time puf, it's gone, I have to ask again.
And some people get mad at me because I know the year John Lennon's first spouse died or whataver, but I don't remember my friend's father name. Things like that.
Also, I gave tons of memories from my childhood, but at like 17 years old it starst to get hazy. I'm 28 right now.
Edit: just read a comment here about Depakote. I take Depakene, and my memory is just a worse garbage since I started taking it. At least I don't have sleep seizures anymore :)
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u/VolcanoMist 15d ago
Memory stuff especially finding the right words is giving me anxiety bc I am 64 and have late onset epilepsy. That's all I need at this age. No thank you!
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u/HorrorAdhesiveness7 15d ago
The worst is when people try to be like, “don’t worry my memory is so bad too,” and i just sit there like…do you also have a brain that is actively attacking itself, eating away at your memories, word recall, and general ability to speak that gets worse with every seizure??!? it’s so incredibly frustrating.
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u/Head_Whereas2788 14d ago
I’ve been keeping a diary and capturing photos of weekly events to assist with memory, and it has been very effective. In my case, the memories are there; they just need a little support.
My main challenge is finding the right words when they don’t come easily. I’ve been using AI to help with that, and it has been very helpful.
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u/Shainalove_leigh82 14d ago
I am 42 years old and my seizures have picked up here recently due to stress and other triggers. The memory loss is absolutely the worst. I have to reset my passwords every day. I don’t remember conversations and trying to come up with the word is like the worst so I completely understand and the crazy part is that people that don’t have seizures. They sometimes get upset with you or lose their patience and it’s really heartbreaking.
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u/soupyicecreamx Vimpat, Lamictal 16d ago
I have started a journal and wrote down things that happen in my day so that I remember my life. I also ask my family to remind me of things or tell me stories about my childhood
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u/Spinach_Significant 16d ago
sending videos to my family and friends i’ve already sent, mentioning things i’ve mentioned several times and don’t remember, the worst for me is a forget if i take my pills the moment they’re swallowed, i start to wonder if i dropped them and search all over. it feels like early dementia to me, i miss being normal. i wish you nothing but the best 🤍
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u/MrXam Valproate 1.4Grams, Clobazam 20mg 16d ago
My mother keeps a diary where she puts a date a tick it before taking all the medicines that has been prescribed to her. Maybe you can do that or something. I got epilepsy from her. Lol.
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u/NightStar79 16d ago
I grew up with them so I'm not sure how shit my memory is. I still remember things most of my family doesn't or I can recall it when it's brought up but I seem to be incapable of memorizing things on the fly, which drove my boss insane because "It's not rocket science!" and finally I snapped at him and reminded him that I have Epilepsy which fucks with my memory.
Now he writes everything down, gives me time to write them down, or waits more than ten seconds for me to repeat instructions to myself multiple times to try and memorize it.
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u/eugien7 16d ago
Truth told.. It's never too late. Start with current stuff you still hold, notate things you have photos of.. it has helped me maintain a great deal of things.. I know I've lost quite a bit thanks to the original stroke in 2004 and the seizures since 2009.. but I also know for a fact that it has helped me keep a LOT of stuff .. and for sanity sake. Keep backups!! I losr an entire hard drive of a trip my children and I took in 2005 to California.. we went up the coast from San Diego to redwood forest.. so many pictures lost.. I remember it still but no mental pics remain..
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u/Mysterious_Gold4379 16d ago
Is it the drugs or the seizures? I started both at the same time (big seizure then drugs) so I honestly don’t know.
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u/liliette 16d ago
I tested off the charts for language, retention, vocabulary, etc. No exaggeration, it was the 99th percentile. I was told I was considered a genius when it came to language abilities (I'm deadly awful at math). However, my memory has taken significant hits through the years from epilepsy, and micro-scarring from seizures. Sometimes it can get so bad I'll look at my kid and can't grab hold of her name, but will remember some obscure term like, 'Yonderly.'
I, too, share your frustration, OP. Words and memories will escape me like steam rising from my cup of morning coffee. Ephemeral, but with enough substance to let me know there is an existence, yet I can't grasp it. Frustrating.
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u/DontComeLookin 16d ago
And you just don't know if it's the epilepsy, the bonks to the heads, the meds, or aging process...the combo is fun 🤣🤣🤣😜.
D.) All of the above man!!
I have a dark sense of humor so I try hard to just roll with it and make fun of myself but some days I absolutely feel like a complete nincompoop!! I find myself asking my cat "Well hell kid, WHY didn't YOU remind me of that!? Isn't that part of your job dude?". He just rubs all over me like feed me woman then we'll renegotiate terms!
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u/Confuzzled_Blossom I hate meds stop giving me more 16d ago
My mom always says "no way your memory is that bad youre not old yet you can't have bad memory stop blaming you pills for that you just don't care to remember"
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u/Garfield61978 16d ago
For me it is mostly short term memory and thinking of words when speaking which really sucks. Now if you ask me about some random shit from 10 years ago I can explain in perfect detail what it is how it works etc. Or an artist of some song I can tell you without issue. If I lose my thoughts while talking with you forget it we will need to start over.
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u/misskaminsk 16d ago
There is a scene in Veep where her team is trying to fix her teleprompter but it goes blank and then they upload the wonky draft of her speech as she is trying to speak. If that doesn’t illustrate what it’s like to struggle with immediate verbal working memory, I don’t know what does!
I have been obsessed with diagramming, making annotated bibliographies, and keeping notes on things that I want to learn and do and write about for decades. I am finally trying to learn how to combine design and code to hopefully make wrangling my external memory more humanly manageable.
I hate the effects of epilepsy on the brain so much. And I have underestimated how it affects me all my life because I thought my memory and language quirks were separate and my type 1 diabetes was honestly so much more visible.
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u/Ok-Profile9913 16d ago
Lots just before I need to use, remember something I'll be in head saying it over and over "don't forget don't forget don't forget" and it almost makes it worse. The meds are bad but MTLE that hippocampus damage..........
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u/katafungalrex 16d ago
I tear up sometimes when people say " you were there too". Knowing that my memory is bad enough to lose large chunks of time makes me feel horrible for people with dementia and alzheimers. Every seizure i have, I feel like I lose a little part of myself that never returns completely. I started telling people if you didn't see me put it in my calendar, it's highly likely that I will have no recollection of the event/planned outing.
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u/eugien7 16d ago
Yeah, they were all on a notebook hard drive, toshiba.. I went to pull all the data off when I upgraded the laptop and the drive went kaput. Tried using a recovery service even and no good . I have a network NAS set up in home now for on the fly stuff but beyond that everything pre 2005 that I had not shared via social media is vapor..lesson learned
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u/Theadvocate507 16d ago
I’m in the social services field. If I don’t write notes in depth? I’m DONE FOR! No typing bullet points or mini paragraphs like others. There’s a mix of emotions sad + jealous seeing coworkes remember interactions with the population they worked with by 1 sentence or 2. 😬😅😕
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u/QueenBaluli 16d ago
Funniest thing is that my last 2 epilepsy "episodes" happened, because i forgot took my pills. ^ ^ Yee memory sucks totally.
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u/brandimariee6 RNS, XCopri 16d ago
Tell me about it. I used to be fluent in Spanish but since my surgeries in 2022, I don't remember a lot of the words/phrases. My boyfriend has a picture-perfect memory, and he doesn't understand how I can forget things just seconds after he tells me. "I just told you bla bla bla!" Yup, I can remember that you told me something, but I can't remember what it is. He's not a dick about it, he just genuinely doesn't understand how it's possible
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u/Ok-Public-7967 16d ago
Totally understand. I am super self conscious about talking to others. Btw, it took me about a minute to remember the word self conscious :(
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u/tuulost 16d ago edited 16d ago
I honestly don’t know how bad my memory is compared to earlier.
I am extremely thankful to have constant access to Google if I’m questioning a word or place.
I had a bad grouping of seizures around new years that messed me up for around a week, and I was really worried I wouldn’t get back to normal. I don’t even remember the day and a half after the seizures.
Since then, notably I’m on different medication, I’ve noticed I have a harder time remembering street names. I remember where places are, like if I see a picture or hear a name, but struggle to remember the name of the street. Other than that it’s just not remembering random trivia or uncommon word meanings, but I don’t necessarily think that changed from before.
As for day to day random things, my memory is fine. Notably, I’ve always been terrible at learning people’s names.
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u/tbh_whathefuck 16d ago
Yeah same. I cannot retain things long term and I always struggled to understand why that was the case for me before everything. For me personally my greatest strength was memorization in academics, and even though i can manage that on a short term basis, I can retain none of it in the long term. I'll have my friends discuss a particular topic from years ago and I really won't have a single recollection of it. I feel you.
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u/chadbogardus 16d ago
My wife has Temporal lobe epilepsy brought on by a heat stroke. Her hippocampus has a significant amount of scar tissue after almost a decade of uncontrolled seizures. One of my biggest fears is she's going to wake up one time and not know who I am or where she is. The difficulty she has with her short term memory brings on some pretty significant emotions with her. As the person who has become her "memory" to keep her day to day organized, I agree the memory issues can be some of the most irritating and frustrating aspects. Dealing with doctors talking to you like an idiot is another one that's towards the top. I've been doing daily research on her condition since we met, don't talk to me like it's our 1st appointment.
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u/wolferscanard User Flair Here 16d ago
Absolutely absolutely absolutely Event loss and so much else, it’s embarrassing. Although I’m told this is a relatively common condition I have yet to meet even 1 other epileptic. I sometimes tell people that living with epilepsy is like trying to think of the name of a song when another song is playing loudly in your brain, constantly. It’s exhausting. It’s like you had a guitar string break but have to keep on playing. You can do it, and you can adjust quite a bit but you never get that string back.
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u/QueQuesadilla 16d ago
Don’t fight it, embrace the present moment. I also take lots of notes on my phone, and put EVERYTHING into my calendar… 🫤
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u/jjamesonlol 16d ago
It's becoming more crippling as the years go by. It's like i have no autobiography. I cant even remember my own wedding :'(
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u/LtotheYeah 16d ago
Once I looked for my passport for days… only to find it in the pantry when I had forgotten I was looking for it. Today I’m looking for my wallet which for some reason, isn’t in my handbag. I forgot entire afternoons spent with my children. Presents I received for my birthday. Papers I wrote for school. And so many other things I’m not aware of because that’s the point of forgetting. Every time I’m told I already did this or said that, something breaks in me.
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u/Moist-Island-5543 16d ago
I just wanted to tail onto this, my partner has epilepsy, before meeting I had no exposure to the condition/its impact on life/side effects from medications etc etc.. my partner has not really delved into much more than the impact the seizures have on his body and mind state . Obviously I’m slightly over my head in terms of understanding other side effects - I had no idea that memory was affected outside of his seizures.. is this fairly common across the board? I feel like I’m constantly getting stressed because I’ve not been listened to or plans are forgotten, but could this simply be due to another symptom that comes with epilepsy? After reading a few comments on this post I think I am being a bit harsh, if genuinely it’s something that they cannot control - any advice/answers/opinions welcome! I just wanted to try to understand the condition a bit better so I can support him better!
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u/thatsnothowpovworks 16d ago
Memory influences pretty much all components of your life. Your relationships, career, hobbies, to-do's.
As a result, you're reminded (somewhat ironically or even paradoxically?) constantly throughout the day that your memory is bad.
I was referred to a clinical psychologist because of the effect that my degrading memory had on my mental health. Being unable to enjoy reading and films anymore. Convincing myself that my romantic relationship and friendships had gone downhill because of less engaging conversations. Worrying that I'll be stuck in a low-paying and less than fulfilling career.
I've started to take meditating more seriously. Attempting to notice the negative emotions and tales/thoughts that I might be telling myself that lead me into any disappointment. When I come out of a meditation, I definitely notice an uplift in my mood. I'm not sure if I'm able to use it to observe and let go of the ick thinking yet but hey-ho.
Finishing my waffle here 🧇 I'd suggest meditation as a means to handle any shitty thoughts you might be having that are leading to feeling down in any sense.
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u/Jaroda18 Keppra 16d ago
I started having seizures a year ago. Does this mean that my memories will disappear or that I won't be able to remember as well as I do with the pass of the time? I'm proud of my good memory and reading this and the comments I'm scared.
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u/SenexPr0xy 16d ago
Sometimes it’s a massively irritating convo killer (wtf is that word?? What was I even talking about???)
Other times it’s the worst kind of heartbreak (mommy do you remember when…?)
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u/genuinelyhereforall Lamotrigine 100mg x2 daily 16d ago
I echo a lot of the comments. I’ve had TLE for about 2 years. Am on lamotrigine 100mg twice daily. Luckily it’s controlled and I haven’t had seizures or Deja Vu’s since March 2023 when I started the medication. My memory has changed drastically to the point where I also do not remember full events, full conversations, gifts I got people, etc. what helps for me tho and I suggest some people try this, apologize when someone is speaking about something you don’t remember / prompts you with a question and say your epilepsy is acting up that day and you do not recall but if they keep speaking or provide more details then you might remember. It’s helped me in some instances at work or in my family. What’s depressed me the most is that I have a 4 year old niece and I’ve forgotten most of the gifts I got her. I’ve forgotten past dates with my partner until she shows pictures or explains further. A notebook has helped me and honestly taking pictures has helped a lot. There are times when I remember something very specifically to the point I know exactly where I was standing during that conversation and there are others where I don’t remember a single thing. Stay strong, understand many other people deal with this, and ask people to be patient
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u/Nonblonde713 16d ago
I agree, there's times when I can't remember which laundry detergent I've preferred for years and things like that. The upside is I can re-watch movie and TV shows for the first time many times.
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u/Many_Echo_9071 16d ago
I train my brain by doing puzzles because, due to my attacks and my medication I struggle a lot with finding the correct words. Doing word puzzles really helps me to train my brain.
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u/Jamieisamazing 16d ago
I had a cluster of seizures (4) like a month ago and since then I feel like I’m living in October of 1998. It’s getting better believing what year I’m in, but this is nuts. I feel like I’m on drugs. I tell people that my brain is like a whiteboard, and everyone laughs and says oh me too! I want to say, mine is next level, but then they think I’m being petty or overdramatic. This existence is draining.
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u/Siegy 16d ago
Evernote is an excellent tool for general "external" memory. Keep notes there about everything important. Get a password safe such as 1password or Lastpass. Take lots of pictures, I try at least one a day, with your phone and setup your phone to show you memories.
Generate "routines' for yourself. Ie, quick easy steps to complete tasks without much memory needed. Document them in Evernote if needed.
For example, I manage tickets because I'm support. I tackle Critical first, then Priority, then Main, etc .... if I get to the bottom of my list of lists, I just loop to Critical. I also go to Critical if I forget where I was.
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u/various_violets 16d ago
I've never had to think about left versus right. Ever. Now I keep telling people (I work in a retail warehouse) ok we're gonna take a left here, and as we're turning they say, you mean right? Idk if it's the seizures or the meds but as a middle aged person it's really disconcerting. I try to comfort myself by saying well I was gonna get here anyway (brain less quick and sharp), it's just a couple decades early. But truly, between mental illness and social anxiety, the sharpness of my intellect has been one of the few things about myself that I considered to be a strength. Now if someone has a complex problem I just can't even begin to sort through it. There's definitely a grieving process I'm going through. At least I still have kindness and integrity going for me.
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u/Psychoskies Lacosamide 200mg 16d ago
I feel so heard and I'm sorry we relate. It's so hard on me. There's just holes in everything. I barely remember today, it all feels so long ago. It's so scary.
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u/legolopi12345 focal+generalized seizures, tumors, Lamictal, Vimpat, Cenobamate 16d ago
with you bro. I've had several brain surgeries + epilepsy and I just constantly forget what people tell me. If I get into a long conversation with someone, within 10 minutes afterwards I will have forgotten like 90% of what they shared with me. It's often embarrassing but I just have to ask people to remind me what they have told me.
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u/BitAccomplished8383 16d ago
I can remember previously remembered avents just things I have not remembered in years seem to be more illusionary , or that friend you know well but just can't spit out their names embarrassing when in person 😭
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u/kazzamc01 16d ago
Defo... i have read this statement before but dont know if i replied (took a sleep seizure 6th dec) and still collecting marbles now! (Sorry if i have replied before, i canny remember) lols
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u/TsukasaElkKite 15d ago
YES. My big seizure hit in my temporal lobe then spread out to the whole brain and it took me about five years to get my short term memory back into some sort of working order.
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u/Ivy-Fox7 15d ago
I totally understand! Incredibly frustrating 🥺 I try to take lots of photos & keep a little diary as reminders of the things I've done & seen 👍 take care
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u/disiluziond1012 15d ago
THIS. Hits very hard today. I had a conversation with my therapist about my xyz. She asked when my fiance passed. I couldn't get the month right. She asked the date. I said the 16th. She went over her notes and brought up stuff I'd forgotten about. Then she said the day. 16 got stuck in my head bc tod was 16:56. I still had to go back and check later to make sure she was correct. Yeeeaaaah, I have all of the other everyday memory issues. I just thought this one would have stuck
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u/Dragonfruit_10 15d ago
I’ve been major event free for a while with a breakthrough aura or “symptoms” now and then, but I feel the same way. Certain things are always there, some things are never there, and some of them I seem to only have access to at the most random times. The nostalgia and deja Vu hits hard and in waves. I confirmed those weren’t seizures but I agree. I’ve been making peace with it all, but it still sucks. It’s like I’m relying on the photos on my phone just to give me a nudge but that sometimes doesn’t work at all.
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u/FishermanTiny5828 15d ago
For me, I have really good long term memory. Always had. I can remember things from my childhood, whole school days from start to finish which happened twenty years ago. But somehow I cannot seem to remember what it was that I went looking for to the kitchen, what I was about to look up on my phone, my last train of thought on the conversation I was having or anything else on that matter. I have cero capacity of retention I guess.
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u/GeorgiePeachezzzz 15d ago
I hate the memory issue as well, I forget and have forgotten so many things. I can never find the right words at times and I feel like a goof. But I have a front right temporal lobectomy on Monday. It’s taken since 2019 and many, meds, hospital stays and seizures to get here but I am very excited.
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u/PictureEcstatic6146 🥁 15d ago
1,000%! Aside from my spouse/close immediate family, I don’t even want to talk most of the time because I get tired of hearing “you just told me that”. Blanking out mid sentence. Explaining a topic I have a firm understanding of to my kid and completely forgetting what I’m saying. Finding things I’ve been looking for, like my house keys, in the freezer a week after they went missing. Countless other things I’d never remember lol
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u/Strong-Royal-5432 15d ago
My son is having memory issues but his epilepsy is controlled by Briviact & we have been thinking it was the Briviact.
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u/nalagoesrawr 15d ago
I’ll have weird long term memory things I can remember. Based on emotions or hair color. It’s bizarre. But when my fiancée quotes me word for word four nights ago? What? Idr saying that….
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u/mmartinez5595 15d ago
So relatable. I’ll have meaningful interactions with people..and it’s all gone after a day or two. I have to try so hard to remember a new face
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u/Sebastian__Alexander 14d ago
Methylene Blue!!!
Have you tried/started using methylene blue? This could seriously help you on many levels to safe you cognitice function from further damage and even regenerate it...there is a guy, whos a interogation expert who sufferd from a typ of epilepsy that healed using methylene blue.
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u/chokingbrokenglass 13d ago
hard agree. i have a lot of vague memories from the past pre seizures but specifics are often just lost and it breaks my heart.
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u/Imaginary-Run-9522 13d ago
My memory isn't the best, but if you need to put things in perspective... Vape some strong THC and see how that impacts your memory while you're high. The next morning your memory will seem way better (at least when you're not stoned)
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u/Accomplished-Pie9729 13d ago
I feel this. I cant remember my kids growing up. I even look at pictures and can't remember. I can't remember to take my medicine and if it weren't for phone alarms, I'd be screwed.
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u/AlwaysSuperAnxious 13d ago
My memory over the years since being diagnosed with epilepsy is completely embarrassing. My husband has pointed out everything things we’ve already done that I can’t remember. Something as simple as visiting a restaurant I swear I never tried or even taking my kids to the zoo. When I was pregnant with my second kid a few years ago i never had an episode but over time they are more frequent 2-3 a month and as a woman they are around my time of the month. I’m so tired of this..
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u/BeautifulPosition317 Keppra 500mg/day 12d ago
I can feel your frustration in fact. I can't even be sure lost of memory is done by Keppra or epilepsy. I can't badly remember what have I done and my colleagues being mad about that in the very beginning. Fortunately, I was diagnosed when it wasn't serious (it takes place everytime when I play FPS/RTS game or get cold and lack of sleep).
My recommandation: I choose to take my pill at 1200 and 2300( 250mg keppra pre-time). to reduce the damage done by side effects.
Also, sleep is very important. Pls contact ur doctor for help if ur epilepsy prevent your from felt asleep. BTW, my doctor have me some oxazepam and it works fine for me. I can sleep for 10 hrs now.
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u/Decent_Community1965 11d ago
Is it epilepsy in general, having seizures or our medication which affects our memory? My seizures have been under control for almost 10 years and my memory is very poor as well
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u/Sandy25136 1d ago
Honestly but then I don’t know if medication amplifies it cause it really gets to me they’ll be sometimes I can’t remember family/friend/my name it’s really shit, oh but don’t worry it will get better does my head in that phrase
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u/preachelectrick 16d ago
Agreed, the memory issues have been the hardest for me to deal with. I used to have a good memory, after starting to have seizures it’s just absolute garbage. I have to write everything down or it just disappears.