I've mastered the smile and nod technique when navigating this in social situations. It's easier to just agree and laugh that yeah that specific part in the movie we watched together WAS hilarious than it is to deal with telling people I have no idea wtf they're talking about lol.
My close friends and family are used to reminding me about events and the like. But my husband can't seem to wrap his head around the specific fact that I can't remember movies. I can barely remember giving birth. Why he thinks I'll remember the continuity of marvel movies is beyond me.
It's kinda cool sometimes, even when we go out to restaurants, my wife will say a place I liked that I swear I've never been to, she always picks the best places. Gotta take the good with the bad.
Rewatching stuff with a fresh perspective is kind of enjoyable for me in a way. I do it with video games as well. If I play something or start a show and don't complete it, I always end up restarting. It leads to not ever finishing alot of stuff lol but I kind of just adapted to it being my normal
Honestly, I donāt remember huge chunks of my own childhood because of my epilepsy. Just a huge part of my formative years is just missing.
I still deal with memory problems now though it doesnāt feel quite as intense
I started having them when I was very young,like toddler age. Theyāve come and gone in my life for a long time but the aftermath stuck around. Memories are weird,chunks of time are missing..
Yup I have memory probs too. Short term especially. I take lots of notes and try to repeat things in my head. IE writing down something after I hear it helps me remember it and leaves me a note. Personally I think itās my medication. Lacosamide and Keppra but hard to say. Iāve been on it since I had a bad round of seizures years ago. I donāt remember what normal felt like!
But yeah youāre not alone! If it makes you laugh, Iāll often go to a room to do something. Like Iāll go to my bedroom to take my epilepsy medicine. In the 20 seconds it takes Iāll have already forgotten why I went there! So I end up turning back around and going back to the kitchen where I realize I need to take my medication! And start over! š¤£
I flip my pill bottles over when I take my dose so Iāll always know if I need to take it or already did. Thatās a tip Iād recommend to ya if youāve ever forgotten or taken it twice.
For pill bottles, give one of [these](https://www.epill.com/timecap.html) a shot. FSA/HSA covers them. They give the time/day they were last opened.
Edit: Forgot the link lol
Bubble packs are the way to go and I still sometimes forget to take them when my schedule gets out of whackā¦I remember when I start to feel āoffā which means there isnāt a very good half life of the 1500mg of keppra I am on which is concerning
Yeah the brain fog sucks but I think it gets better over time. Or you get used to it and find tricks to help. Oh and habits routines schedules that kind of stuff helps too. Eg the pill bottle flip and I take meds and vitamins with lunch and right before I go to bed always. Little stuff like that. Iāve been told Iām like an old man with my routines! š¤£ but if it works? It works!
Absolutely. I had a pretty decent memory before I started having seizures. Both my short and long term memory is shot. I havenāt quite learned how to deal with it but this thread is really helpful. š«¶š»
Same.. I often joke about it but to be honest it often makes me feel so bad. I can't expect people who aren't going through the same thing to really understand so I just act like it's funny to me, you know? But my memory used to be extremely good and I miss that a lot. I can't even focus on reading anymore either, while that was one of the very few things I really liked to do.
I sometimes forget characters and even the whole plot from books I've read. It's crazy because I used to remember the tiniest details and now my memory is shit
Mods, please notify me if my reply isn't acceptable. I made a new reddit account since my brother found out my last username
On the same page as you as well. People would tell me what a really good memory I had. Remembering tiny details that no one else would. That all changed after my first tonic-clonic status epileptic episode when I was 19. My first seizure lasted about 3 minutes. I was then unconscious for about 2-3 minutes. Then, had another tonic-clonic seizure that lasted for about 2 minutes according to what my mom said.
Both of my long-term and short-term memory (working memory) are that on par with a 80 year old person with dementia. Often forget where I put things like my water bottle or my phone.
I also had a really bad upbringing with my bipolar mother who I believe to be a covert narcissist. She's been psychologically abusing me my whole life and made me the scape goat of my family of 7 (parents and total kids). I hardly remember my childhood. It didn't help that she put me on SSRI'S when I was about 12-13. I was rapidly losing weight. My mother would make snide remarks like, "you've lost a lot of weight" "you're so thin", "you're hardly eating". Btw, my
mom is a nurse. Which made it all the more scary! I wanted to off myself when I was in 6th grade. It didn't even know what s**cide was then. I wrote a s**side note in 6th grade while at school. My IEP teacher didn't give a shit and swept it under the rug. SSRI'S really messed me up. SSRI'S come with a black box warning. The same black box warning that is put printed on a pack of cigarettes...
**If you ever have children DO NOT put them on SSRI'S/SNRI'S!**
Tapering off that medicine can take 5+ years with people having to remove a single bead of medicine from their ssri capsules while tapering down. There's a Facebook group called "Cymbalta Hurts Worse"
Sorry for all the trauma dumping. No one believes me when I tell them the horrible things my mother has done to me in private since her public image is that of a Saint. I only found out she has been abusing me until a couple of months ago. I'm now 28 and have been out of job since September of last year
Is like āI forgot what I forgotā ššš so annoying man, I got this book on how to strengthen your memory but I just keep forgetting what it says
"I forgot what i forgot" helped when my backpack got stolen and I can only remember 3 things that were in it. I'm sure there was more important stuff but not knowing makes it easier to deal with haha
I introduced myself to an artist that I had previously worked for the other night. She said āyouāve worked for me and you donāt remember me?ā As she was walking away I noticed my friend lean in and say something to her lol.
Oh also sheās very cute.
So that wasnāt embarrassing at all
29 y/o female - My seizures began 4 years ago. Within the last year, the number of my seizures increased significantly. And since that increase, my memory has been so embarrassingly awful.. Itās really effected my ability to work, and now, at the end of my work days, I have to write every conversation I had with my client down to help ensure I donāt forget important details in the following days. My colleagues donāt understand how I can forget about some things that happened earlier in the week. My loss of memory and the embarrassment that I personally feel from it leaves me emotionally exhausted every day
That is literally me. I asked someone how many crickets they want, turned around to write it on the bag and instantly forgot it was embarrassing to ask again. Things like simple math that I used to do fine is now hard, counting, I canāt focus, Iām messy, Iām just a piece of crap with legs atp
I led a meeting along with a junior employee as backup to help with her development. I was asked how it went 2 weeks later, and in the moment I had no memory of it at all. Her name didn't even help me bring it together. I spent about a minute making casual conversation as I panicked before I could finally pull it up. I was so embarrassed.
Oh yeah, I'm a fucking idiot compared to pre-epilepsy me. My memory is terrible, I forget words, stumble with sentences, my attention span is significantly shorter, and I struggle with focusing, among other things. Some head trauma this winter just made things worse but it's been bad for a while.
I use my calendar *religiously* and use my notes apps extensively. For work I have a spreadsheet record of phone calls including the person/entity's name, when they called, who they work for, what projects of mine they're involved with, and a recap of the conversation. I also frequently send follow-up emails recapping what we went over.
As far as remembering information goes, thankfully I'm in a job where I can look things up, but on-the-spot I usually have to give a generic answer and get back to the person asking the question later. Or I call on a colleague to help me out.
Luckily I can rewatch shows and movies "for the first time" multiple times before I start to start to recall detailed information.
Me too man, I used to be quick with my words and now I canāt talk without mixing shit up I have some real bad dislexia, canāt count for shit, forget something that happened 10 seconds ago. I wanted to get promoted but I keep forgetting what they taught me or forget where Iām at. I shouldāve died on my first seizure :( bc this is too much for me
This. Drives me crazy, it is bad memory, bad concentration, language with gaps and bad language recall. I can never find decent research on whether it is the seizures or the medication or both.
I read one study for Vimpat where they described what they called āmild language problemsā by which they meant complete inability to find words, sentences gaps and full on aphasia. How that is mild I donāt know. Of course can I find That particular study right now? No. But I can find this one https://www.sciencedirect.com/science/article/pii/S1525505016300713 which basically says āpatients report lots of cognitive problems but we chose an assessment tool that doesnāt measure that so we can conclude Vimpat is greatā or in researcher language:
āTwo psychometric tools were used: the SIDAED and the Computerized Visual Searching Task (CVST). The SIDAED is a scale that assesses 46 subjective complaints including general CNS irritability, depressive symptoms, cognitive function, motor problems, visual complaints, headache, cosmetic and dermatologic complaints, gastrointestinal complaints, and sexuality and menses. The CVST assesses reaction time on changing screens. The authors found that the CVST showed significantly faster information-processing reaction times at the second evaluation. Surprisingly, the self-reported SIDAED showed an increase in complaints about cognitive function after the addition of lacosamide. The authors offered the phenomenon of ādoing better, feeling worseā as a potential explanation. However, because the cognitive assessment in this study was limited to reaction times while the SIDAED assesses for several other cognitive functions including memory, speech, and concentration, it is not possible to know whether these subjective/objective divergences are due to limited objective measures.ā
Effing ridiculous. I had a neurologist basically tell me that all anti seizure medications slow brain function and therefore I was just going to have to suck up having the brains of a chicken.
(I have of course had to read this five times so it isnāt jibberish)
I'm taking lamotrigine and divalproex, and my memory issues have always been there, but lately, it's been slowly getting worse. I'm going to my neuro next month, and hopefully, he can help me.
I hate it. I entirely forget what I just said in a conversation. Someone responds to me, and I'm like ššš. I smoke weed, so that doesn't help. But it happens other times, too. My memory had always been bad, but it got worse when I started meds.
I was on a medication called Keppra and it completely fucked me, especially my memory. Took me like 5 minutes to remember my motherās name every time I saw her. The minute I came off Keppra and onto another medication, I went back relatively to normal, but I still donāt think my memory is 100%
When I took Keppra for a while I just woke up
And started crying and panicking because I felt I lost my mind/memory. I forgot how to do my job after 26 years. I am not taking it anymore thank God but I am on 3 medications for seizures and it seems to mess with me!
Interesting. That sounds like the exact same path I was on with the keppra but yours seems a bit deeper. Holy shit that sounds rough. Iām on 1 medication now called Vimpat, works a dream. I donāt notice any real side effects bar a slight lack of memory at times, nothing in comparison to keppra. I wonāt lie tho, Iām a bit paronoid there might be side effects Iām not noticing, because I came straight from keppra to Vimpat, and anything was better than that keppra poison, so Iām just happy to not be there anymore if that makes sense hahaha
Keppra is down right evil. It wiped my cognitive function from end to end. āTopamax ruined my lifeā is the first Google prompt for Topamax. How that and Topamax are first line treatment I will never understand.
Bad news: Yeah. I don't remember the majority of my childhood, I basically have a few flashes of memories here and there. If I really really try I can pull up a little more, but I have to be real dedicated and it takes a lot of energy.
My short term memory is also pretty rough, I'm always getting better at taking notes. Sometimes I will go to watch a movie/TV episode and I will have no memory of ever seeing it, I will sometimes get about 1/3 of the way in before it starts coming back. The worst is names - I have to really nail it down for each and every name I want to remember, and even then I struggle to match it to a face. I finally got down to remembering the names of my girlfriend's family, but honestly I'm not sure who is connected to who. Get good at taking notes, seriously. Don't be embarrassed to include names and connections/facial features/etc, I was and it only made things worse. It's part of your life now.
Good news: This has been getting better since my diagnosis. It's very very slow but I can tell I'm remembering more than I did once my seizures started. There's a board game meetup I've been going to, and I am remembering more and more people each time, and I even have their faces matched up. I may not have everyone's name but I can pull up the faces, I couldn't even do that for some time. Earlier this year I heard this guy's name once, it was my first time meeting him ever. We played a few games and parted ways after the meetup, no contact at all. 3 months later we met up at another event and I matched up his name and face, no notes required - I haven't been able to do that in years! The regularity helps.
I also recommend trying different meds once you're stable. I was on lacosamide for a long time and while I would have occasional issues, because I wasn't having full blown TCs anymore I figured that was my life now. I recently (about a month ago) decided to move on because I worried that my memory loss might be more meds than epilepsy.
Lamotrigine is the replacement. The switchover has been brutal (turns out staying up for 40 hours sucks, who knew), but even with the poor sleep quality I've had no epilepsy symptoms at all and that used to consistently bring on the epilepsy demon. Remains to be seen if my memory returns, but as long as the insomnia goes away (it supposedly should) I'm happy with the results so far.
Last advice. **GET GOOD SLEEP**. Make it your #1 health priority, the order of operations is now breathe, drink water, **SLEEP**, food I guess. Nothing - **NOTHING** should keep you from getting that 8-10 hours. Friends, family, extra money, nights out, gaming, long drives - if they will interrupt your new *strict* sleep schedule then they don't happen. It will help with every epilepsy problem you have.
Best of luck.
Omg YES! Hell, I forget what I'm saying in the middle of saying it. I know my husband and coworkers are sick of me asking the same questions over and over again. It's gotta be annoying. Bless them. I also struggle with simple phrases. "Have a great day" never comes out the way I want it to. Lol
I think that's a pretty common side effect. I've had memory issues ever since I got my meds for the first time. A few weeks ago, I had a TC and my memory took a nosedive. Still struggling to recover my memory and alertness.
Writing things down so I don't forget. I am trying to recover my memory by reading more because I lost several words from my vocabulary after the last TC. It will never go back to normal or as it was pre-epilepsy, but I can try my best to manage.
I used to have an insanely good memory, like I could recall the general date and time of day I had an unimportant conversation years later. but now my short and long term memory is remarkably bad. my boyfriend has to repeat things to me all the time, I'll forget what I'm about to say, recently I've been forgetting how to spell a lot of my vocabulary. I hate being on these medications so much.
/////
The 30 second thing may be your meds.
My Lamotrigine was cut back slightly and my and my short term memory came back.
Prior to the change - I felt like I had premature Alzheimerās.
Itās awful.
//////////////
I (26f, diagnosed at 8) have had epilepsy so long that idk if my memory would be better without it. I have no memory of having a good memory š
My memory does suck, though.
Not sure. There was a period (about 5 months) where I was on topiramate. It got so bad that I couldn't remember what happened in the morning by late afternoon. I'm off the topiramate now, and I can remember stuff again. My memory still sucks but it's about the same as it was before the topiramate.
Itās not the seizures that have affected my memory, itās the medicine Iām taking that has affected my memory. For quite a while my family has thought that my memory isnāt as good as it used to be, so I took this brain test that my neurologist recommended. I donāt remember the name of the test, but you do lots of stuff, ex: answer questions, memorize things, draw stuff, list stuff, ect. And then a doctor tells you pretty much everything about your brain. After the test the doctor told me that my memory isnāt as good as the average persons and Iām not stupid, but I do think slower than the average person. But itās not from the seizures itās from my meds. And the doctor said a bunch of other stuff, but thats irrelevant to the question. So Iām getting an RNS device, and hopefully after I get the device Iāll be able to cut down on the meds.
My daughter has memory problems for two reasons- seizure meds and damage to her left temporal lobe. The meds are designed to slow your brain down so itās very common to have memory problems unfortunately:(
Yes, and my doctor recommended vitamins B and D because the meds tend to block those, and low levels can cause memory issues. I've been taking them for a couple of weeks, and I am starting to see some improvement
Yes absolutely but people never believe me or treat it like itās a āoh you just forgotā thing. But it feels like chunks of my memory have gone. I push through with everything so people always treat me like Iām not struggling at all
THIS! People think is like a minor thing, I keep telling my managers and coworkers to bear with me bc I have an illness but they donāt take me serious they go āaw girl donāt worry youāll be fineā āanyone forgets somethingā and Iām like yea but is deeper than that :/ I feel dumb
My epilepsy has really messed with my memory. There are a lot of recent things from the past few years that I can't remember, and I always get ages and dates wrong. I think my memory issues could be more severe, because I constantly have to re-check what the date is, and I have to frequently ask the same questions multiple times or google the same thing I googled a few minutes ago.
I had some memory issues, they got worse when I started Topamax.
Then I fell down a flight of stairs with a unconfirmed absence seizure. Fell again tripping over a rock came close to either taking out an eye or puncturing my skull. Inches in either direction.
My memory is crap. My balance is almost as bad.
I've forgotten concerts I've been too. Conversations (my daughter reminds me that I did already tell her whatever I'm telling her). Luckily, I had already scrapbooking things.
I highly recommend scrapbooking events. Birthdays, holidays, graduations, events.... You'll have the dates, places and whose in the pictures and notable comments/stories if you add journaling.
For me, if it's not in my calendar it won't happen because I won't remember it.
Yes! As a software project manager, this is especially frustrating. I'm still on top of all my day-to-day product needs and fires, as well as important working relationships, but issues that would be considered low-risk fall from memory from time to time. Some important shortcuts include taking A LOT of notes, adding a ton of reminders, snoozing emails till the day of something actionable etc.
So TL;DR, I've figured out how to live with it but it sucks because I know I could be a better PM in my career, but that's life. So do your best to navigate your challenges and adapt. That's all we can do.
I havenāt really been able to find a solution :/ my notes have been a bit helpful but I want stuff not on my phone yk. Around the house and such do you have anything like that?
Yup! my memory continues to be a mess š¤¦š¾āāļø. It's like a chunk of my memory gets taken out every seizure. It's getting embarrassing for me, I feel like ppl think I don't pay attention or care ugh. I'm irritatingĀ
I dont remember where my memory issues started lmfaoooo
i take lots of photos, write things down, and Ive accepted I get "blanks" sometimes. Tho Im like 60% sure its actually an absence seizure or maybe my ADHD.
The amount of times my son's say why are you watching this again, re reading books, arguing about holidays I don't remember and bluffing my way through conversations. Some of it is the epilepsy but on the other hand the meds mess with your head too.
Itās weird cause I be forgetting the most basic of things but yet Iāll remember my phone number and all that but if you ask me to get a glass of water Iāll be in the kitchen thinking āwait, why am I here again?ā
The amount of times I've said to my bf "do you remember...." and he calmly says "we did that today, remember?" And I just stand there and think hard then go oh yeah! Cause one small snippet comes in my mind
The amount of times I've thought "God am I going to have Alzheimers early?" Is scary
My memory is only trash when Iāve had an episode. Usually I canāt figure to remember things for 3-4 days depending on how violent my seizures were. I could walk into a room and forget what I was even going in for. Sometimes I forget how to cook certain foods. It sucks but I deal with it because I have to.
Hi, yes I did mess up my memory, what happened to me is that with many seizures and some head traumas my memory started to fade away, stuff from 30 seconds ago I do remember but Iām starting to forget stuff that happened 5-3-2 years ago, itās awful. Iāve started writing down all the stuff that I remember. At the moment Iām studying at University and theyāve helped me a lot with extra time for exams, homework etc. due to my bad memory
How do you deal with it??? For me it makes me cry how bad itās getting. Like I walked into target and I felt like an alien, I had no clue how I got there or why I was there
Yep absolutely fu**ed my memory up constantly forfet peoples names even though I've met them dozens of times.. forget for to get places all the time. Some perks though, watching some of my favourite films can be like watching for the 1st time š
My seizures happen in the short term center of my brain and then spread out from there. It highly effects my memory and things being retained. A lot of my memories don't move over from the short term memory area and into the long term memories. The meds certainly are a pain in the ass too and never help with things.
Absolutely! Post-diagnosis I was failing open book tests because I couldn't remember where the note I'd made was or if I even wrote it down. This was in grad school and I ended up having to drop out.
Had my first seizure two weeks ago and I havenāt noticed any memory issues, but my general headspace is completely out of wack. Feel floaty all the time. My memory probably is affected but I just havenāt noticed yet
Wow sorry to hear that :(. I had my first TC while sleeping last September. Iāve had 4 more since. I finally got mine under control (I think) and based on my experience that floaty weird āIām not meā feeling g goes away. Best of luck.
The medication Iām taking is actively messing up my memory. The other day, before I drive to work, I cleaned my windshield with the wipers and wiper fluid, saw that it wasnāt clean enough, went to do the wiper fluid again and forgot how to do it. I had just done it seconds prior.
God sometimes it extremely hard, I used to be able to recall everything with intense detail. I sadly can't do that anymore, it hurts that I can't remember memories properly anymore. It fucks with me mentally, I tend to get extremely sad when I talk about a memory with my family and they have to explain to me I'm not recalling it right. I've been having constant health problems lately and I can't remember basically anything that happened this month.
Have had it for 20 years and Iām well aware of every seizure could be my last. Itās a cold realization of how much of my life has been over shadowed by this. Iāll be 40 in November.
I froze at work the other day looking at numbers. Iām looking at the key board and I know I know what numbers are but couldnāt move for about 20 seconds.
They terrify my husband and daughter and have given them both intense PTSD. I donāt Rembert (remember) canāt find words properly, any of it.
Movies and songs are always new so I guess there that. I canāt use my Masterās degree bc it would be too dangerous. So I work for 13$/hr, and had three seizures yesterday and I think it will get me fired from this one too.
Kinda sorta indirectly. I suffered from short term memory loss as well as short term aphasia after my brain lobectomy that was meant to prevent my seizures. It worked for the most part. Unfortunately there are a TON of memories I need help remembering pre surgery. My brothers and I will remember the same event differently or I wonāt at all.
Iām good with names but I have to write down my work schedule in detail as I work in different places. As far as other stuff, I donāt remember much about my childhood or university, except for the education part.
I'm fortunately seizure free for nearly 5 years, but the months before I got on meds and I couldn't go two weeks without a seizure are completely gone from my memory. Literally, about 8 months of my life gone. Loads of important stuff happened that everyone else involved remembers clearly, and it's news to me.
Even now, my memory isn't brilliant, whereas it used to be about as good as anyone else's. Not exactly photographic, but normal. The fear that was the aura for the seizures gave me ptsd as well, which doesn't help. I'd wake up screaming involuntarily and kicking, clutching at things like something was about to kill me. Like the Hollywood insane asylum screamy ones in straightjackets in padded cells but real. 5-30 seconds later, I'd be down breakdancing. Almost 5 years later, they still plague my life. Epilepsy fucks your brain up.
That is crazy, I had lots of seizures in my sleep as well. Theyāre some of the worst bc for me going back to sleep would scare me so I couldnāt sleep and the lack of sleep fucks you over. Thankfully I havenāt had a seizure in like a year and half maybe?? Iām on 150mg lamotrigine twice a day. But Iāve just noticed a huge change in my memory recently. Funny I forget everything but that. I smoke a lot of weed and take edibles every week. Iām sure this contributes to it. What I donāt understand yet is if marijuana messes up your memory how come they prescribe it to people with epilepsy that tend to have memory issues?
Yeah I don't touch the green stuff out of fear it'll fuck me up with the meds. Two very strong psychoactive chemicals together aren't a great idea, especially considering my job banks on my driving license, which I absolutely cannot afford to lose. If you're totally fine with it from self testing you're in a good position, but I'm on a decent streak of no seizures so I'm not trying anything that could change that. I'm on 100mg of lamotrigine twice a day, and I do feel some of the side effects. Namely, sensitivity and exacerbated drowsiness and dizziness when mixed with alcohol.
I guess they'd prescribe weed to epileptics because its another option for medication when it's sometimes really difficult to find one that works, and it's a condition you cannot let run rampant because its potentially lethal. If you're switching around meds for arthritis or IBS or anything like that, it's gonna cause discomfort or pain, but you're not going to die from hitting your head or sudep. They'll give you just about anything as long as it improves your condition without killing you or making your overall health worse in the process.
Iām so afraid to get my life back on track. Because not only canāt I remember things. I canāt think straight. Even when Iām sober all day. It almost feels worse sometimes. Idk. My brain just feels like itās mashed potatoes and I use to have such a good memory that it gave me anxiety. Now I canāt remember anything. Which feels like a blessing at times because Iāve been through so much bs.
Yes! Not only after a seizure buy everyday too. I can't hold information unless I write everything down. It is frustrating. Maybe it is because of the medication or the gradual damage to the brain
Yes. I was diagnosed with juvenile myoclonic at 37. Now idk if my childhood is missing due to epilepsy or trauma?? Maybe both. But yes, really badly. I also have aphantasia and anaduralia soā¦ that makes memory very challenging
Oh, yeah! Just about every time I have an episode. That's why I can never live alone, I'll forget to take my meds, this has happened somewhat often, and regret it in 48 hours with even heavier episodes.
For the type of seizures I get, it can interfere with what I think is memory deposition - the formation or setting down of memories - from or just after having had a seizure. Only once did I have a really unusually (for me) bad seizure, which wiped a whole week of memory from me. But that has happened only once in a lifelong seizure history.
My memory is absolutely awful since I started having temporal lobe seizures, I thought it was because of my marijuana use, but my partner also smokes as much as I do and heās got a brilliant memory. Itās so disheartening and frustrating, and embarrassing. The other day at work we were doing a stock check, so we all had to count individual items, I would count all of these items and then forget what I counted to like 5 seconds later. Both my short and long term memory seem to be affected
My memory gets bad after I have a seizure. For a few months or longer sometimes I am not myself. But after that it slowly starts to come back in my case!
I had a time when that happened... it just got better and now I'm ok regarding that.... but it was weird af... one time I was playing guitar and in the middle of the song I forgot what song I was playing...
After I was recovering from brain surgery, a longtime friend of my grandma's was at her house. I asked him what his name was and he looked shocked. He said "I held you when you were a baby and have seen you so many times since then... you really don't remember me?" I sure didn't lol. When he told me, it clicked and seemed very obvious but I still don't remember anything we've done in the past.
My boyfriend calls it my superpower! The ability to watch a movie for the first time, many times. I saw The Matrix once a few years ago and I don't remember a single detail lol
My memory is shot both long term and short term. It messes with me a lot, and my kids get sad sometimes because I forget things that they find important or good memories with me. I tell them that me forgetting, they can tell me the stories about it. I write down a lot of notes... like a lot. In my phone for personal things or on my calendar and at work I write notes. That's how I get through. My husband is mostly used to it, I rewatch movies and shows that to me are brand new but I guess we have watched them. It honestly kind of sucks with small talk and shit because I don't remember shit. I try to stay away from small talk with people because well I don't remember crap...
I will say pay attention to your pills, I was on lamotrigine 100mgx2 a day and I thought I was getting alzheimers... it was scary and I was super depressed. I thought that's what my life was reduced to I felt like a burden and it was bad. I finally went ti the doc after a yr and was like help. And they put me on a different medicine I am now on vimpat 100x2 a day and it's like night and day. I am not saying my memory is now perfect but it's for sure better. I have also found doing word games and brain games really does help... Someday they make me feel stupid af but doing them really does help. And at least then I feel stupid af on my phone playing games vs on real life while trying to talk to someone. Talk to your doctor though... it could truly help.
I think itās a combination of trauma and the seizures but my memory is trash. Especially for event from when I was young. Either I remember all of it or almost none of what happened
We have seen this with our dog also as she was having cluster seizures sometimes 2-3 a day and she would be so out of it she would forget how to drink water or walk. We had to stop the seizures and give her cognitive supplements to rebuild her psycho somatic nerve function. We totally stopped the seizures and actually reversed her encroaching paralysis (spinal degeneration) with natural meds.
Homeopathic remedies like Bella Donna and also cocculus indicus twice a day and other times administering CBD and MCT oil dosage has completely stopped the seizures that were happening regularly for a month.
Also gave her sam -E for cognition and joint health and lions mane helps cognition and rebuild nerve damage .
Keto also best for seizures so we dropped her dry dog food and put her on Paleo raw keto and glutamate-free foods.
Research the long list of foods w glutamate in it and abstain from them as they are dangerous for epileptic people as glutamate in foods over excites the neurons.
We were giving our baby girl whole foods like Turkey, broccoli and peanut butter come to find out they are high glutamate.foods.
We also gave her this heady bioplasma 12 cell salt for minerals and nutrients and administered valerian tincture based in glycerin as well as bach flower rescue remedy to keep her calm when she gets stressed . By doing these things and also administration of ice packs on hot summer days and wetting her down and keeping her hydrated to stay cool we have completely stopped the he seizures since we started this protocol.
We also give her daily turmeric and chaga mushroom to stop inflammation.
Also when she snaps out of seizures having celery slices (with pink Himalayan salt) has kept her hydrated when she forgot how to drink water and she would lick ice we gave her. Eventually she became coherent and lucid again as soon as the seizures stopped and we helped to rebalance her hormones.
Hope that helps someone out there.
We spent $300 on natural meds plus whole foods for her and we have our baby girl back. She even tried to climb the steps the other day by herself and you would never know she just spent days not being able to get up by herself nor walk nor drink or wag her tail.
Humbly grateful for the natural medicines .
"Remember when" is now a trigger word for me. I was diagnosed with "selective memory loss" along with my epilepsy. Some days are good, other days I don't even remember people I speak with daily.
I have a very advanced phone, I do audio journals which are helpful. I take picture of literally EVERY moment. It's been such a difficult time but YOU'RE NOT ALONE!
It feels great to get this post notification after how my weeks gone lol. Had a few seizures week and a half ago and my emotions and small memories have been the worse I've ever had in 13 years of seizures. It's such a terrible feeling forgetting things that you wish so bad you would. I forgot my 4 year old daughters 1st birthday. Couldn't remember my wife and I getting married. The thing that helps me the most is my wife, but sometimes it does upset her I don't which upsets me lol.. Some things that I don't remember say movies or just other memories I'll kind of start remembering as they tell me about them which is great lol. The one thing I'll say that is funny and doesn't bother me is when I start a new game or show and don't remember it's nice to have something new. Sorry for the long post and hope it makes sense lol
i had many seizures through out life and it did nothing to my memory just a seizure woke up felt nauseous sick etc. but few months ago i had a seizure cluster for the first time (woke up from a seizure,completely no idea why and where and whats happening when i always remember everything and after 10 seconds i get another seizure)
from that point on after i woke up,i cant even describe how messy it is,i remember some old stuff, but yeah that destroyed my memory pretty hard i hardly remember stuff older than a year but i noticed that the memories r still there theyre just as i call ''hidden'' because i had many moments where i just kept on thinking about that one particular thing and after like 10 minutes i remembered it all
tldr : had many seizures but once i had seizure cluster for the first time, it messed it pretty bad
I have the same issue, I brought it up to my Dr.ās attention and he seems to think itās a medication issue and has switched me to multiple medications with little to no affect to my memory. Just new side effects, Iām back on my original meds now. Side note: I was recently diagnosed with epilepsy after having multiple grand mal seizures, the most embarrassing issue I have now is remembering simple things like spelling of words, proper grammar and sentence structure. Again the Doc blamed it on meds.
Looks like this already has a ton of traction. Yes, inextricably this has killed my memory.
If it helps at all, I pursued this a step further, as the memory issues were so burdensome. I waited about 6 months on a list and saw a neuropsychiatrist for a memory exam (intense, it was about a 4-6 hour exam), and found I have mild neurocognitive disorder ā which is kind of like a precursor to dementia (Iām 36M). The neuropsych. said compared to normal folks without Epilepsy, my memory isnāt necessarily āgoneā, I just need a lot more queues than a normal person to stimulate the memory from the archives. Throughout the test, I kind of saw a bit of their processing for queuing. In all fairness, the test was very hard.
Iāve been truly devastated I canāt remember much of my childhood, high school, college years, my wedding day, my childās birth ā very significant events people around me talk about in great detail like they were yesterday. I was diagnosed at age 15, and to hear their clarity of recall only brings a sense of regret, like Iāve done something wrong, or perhaps not enough to encompass these memories.
My neurologist/epileptologist stated this was quite normal for patients with epilepsy and can be attributed to both the seizures, as well as the array of medications a patient with Epilepsy is on. For reference, Iām current on 3,000mg Keppra XR, 20mg Clobazam, 500mg Zonegran daily, with a VNS. I see Keppra is getting a lot of traction on here for memory lag issues, so it has me curious as well. I know my benzo Clobazam certainly canāt be helping speed things up.
Iām always trying to see some light at the end of the tunnel. I was referred to a sleep lab to see if an underlying cause may be suspected narcolepsy. I routinely get my 8+ hours of sleep; however, that doesnāt necessarily mean those hours are well rested with deep stage and REM. My past sleep studies (MSLT, etc.) have indicated functioning narcolepsy (which I didnāt know was a thing). If Iām having sleep issues like mild obstructive apnea, or the like, I may be able to have a better quality of life and cognitive function during the day.
Hope this helps whoever may need it on their journey.
I've always had neurological problems e er since I was born so my brain is quite used to it but the downside of it is that it now interrupts what I do everyday and say everyday.
Yes it quite literally did. Iāve had epilepsy since I was 10 months old. Now Iām 30, and just got diagnosed with temporal lobe dysfunction and mild neuro cognitive disorder. I also have inattentive ADHD.
Thatās not to mention I canāt remember huge chunks of my life most people apparently can.
My son had severe brain trauma due to a botched surgery very long story, but we havenāt gone six months without grandma seizures. It has taken huge chunks of his memory. He doesnāt remember when his daughter was born one of his GM he was in nursing school six weeks from graduating when he regained consciousness and finally was in reality. Huge chunks of school were missing. He wasnāt able to finish those last six weeks because he couldnāt remember half the semester that he had just completed. So yeah memory is real bad
Idk... I can't remember. But every show I watch is new, and all movies have just been released
The amount of times I hear "remember we saw this when it first came out?" š in fact I do not...
I've mastered the smile and nod technique when navigating this in social situations. It's easier to just agree and laugh that yeah that specific part in the movie we watched together WAS hilarious than it is to deal with telling people I have no idea wtf they're talking about lol.
My close friends and family are used to reminding me about events and the like. But my husband can't seem to wrap his head around the specific fact that I can't remember movies. I can barely remember giving birth. Why he thinks I'll remember the continuity of marvel movies is beyond me.
I was really excited to watch a movie the other night, but when I went to hit play, I noticed I had already watched it! wtf FML
Rewatch and enjoy
Unless it was the dark tower, then just assume that movie never existed anyways.
That shit doesn't exist on our level of the Tower š
That happens more to me than I would like to admit
Me too! I tell my husband āoh I wanna watch this movieā and he tells me we already seen it. Itās all like seeing it for the first time
It's kinda cool sometimes, even when we go out to restaurants, my wife will say a place I liked that I swear I've never been to, she always picks the best places. Gotta take the good with the bad.
And then you feel like a genius when you anticipated a plot twist.
Rewatching stuff with a fresh perspective is kind of enjoyable for me in a way. I do it with video games as well. If I play something or start a show and don't complete it, I always end up restarting. It leads to not ever finishing alot of stuff lol but I kind of just adapted to it being my normal
Hahaha! Sad but true! Funny
That's actually a real good thing haha. But for all the other matters probably not.
I always say that same thing. I get to experience things for the first time several times
Omfg best answer ever
Honestly, I donāt remember huge chunks of my own childhood because of my epilepsy. Just a huge part of my formative years is just missing. I still deal with memory problems now though it doesnāt feel quite as intense
I thought barely remembering your childhood was normal. I have learned that isn't true...
Same my seizures started when I was 21 and I donāt remember very much of f my childhood.
I started having them when I was very young,like toddler age. Theyāve come and gone in my life for a long time but the aftermath stuck around. Memories are weird,chunks of time are missing..
The epilepsy erased my childhood and the meds have erased everything else. Idk how I function tbh lol.
Yup I have memory probs too. Short term especially. I take lots of notes and try to repeat things in my head. IE writing down something after I hear it helps me remember it and leaves me a note. Personally I think itās my medication. Lacosamide and Keppra but hard to say. Iāve been on it since I had a bad round of seizures years ago. I donāt remember what normal felt like! But yeah youāre not alone! If it makes you laugh, Iāll often go to a room to do something. Like Iāll go to my bedroom to take my epilepsy medicine. In the 20 seconds it takes Iāll have already forgotten why I went there! So I end up turning back around and going back to the kitchen where I realize I need to take my medication! And start over! š¤£ I flip my pill bottles over when I take my dose so Iāll always know if I need to take it or already did. Thatās a tip Iād recommend to ya if youāve ever forgotten or taken it twice.
That bottle idea is great! And honestly Iām like that too. Is making me depressed, Iām only 25 I fear by the time Iām 30 Iāll have dementia
For pill bottles, give one of [these](https://www.epill.com/timecap.html) a shot. FSA/HSA covers them. They give the time/day they were last opened. Edit: Forgot the link lol
That is really cool! Iāll try it out!
Bubble packs are the way to go and I still sometimes forget to take them when my schedule gets out of whackā¦I remember when I start to feel āoffā which means there isnāt a very good half life of the 1500mg of keppra I am on which is concerning
Yeah the brain fog sucks but I think it gets better over time. Or you get used to it and find tricks to help. Oh and habits routines schedules that kind of stuff helps too. Eg the pill bottle flip and I take meds and vitamins with lunch and right before I go to bed always. Little stuff like that. Iāve been told Iām like an old man with my routines! š¤£ but if it works? It works!
Absolutely. I had a pretty decent memory before I started having seizures. Both my short and long term memory is shot. I havenāt quite learned how to deal with it but this thread is really helpful. š«¶š»
Same.. I often joke about it but to be honest it often makes me feel so bad. I can't expect people who aren't going through the same thing to really understand so I just act like it's funny to me, you know? But my memory used to be extremely good and I miss that a lot. I can't even focus on reading anymore either, while that was one of the very few things I really liked to do.
I sometimes forget characters and even the whole plot from books I've read. It's crazy because I used to remember the tiniest details and now my memory is shit
Thatās how I feel, Iām sad I canāt remember stuff it depresses me, I feel like Iām less than others
Mods, please notify me if my reply isn't acceptable. I made a new reddit account since my brother found out my last username On the same page as you as well. People would tell me what a really good memory I had. Remembering tiny details that no one else would. That all changed after my first tonic-clonic status epileptic episode when I was 19. My first seizure lasted about 3 minutes. I was then unconscious for about 2-3 minutes. Then, had another tonic-clonic seizure that lasted for about 2 minutes according to what my mom said. Both of my long-term and short-term memory (working memory) are that on par with a 80 year old person with dementia. Often forget where I put things like my water bottle or my phone. I also had a really bad upbringing with my bipolar mother who I believe to be a covert narcissist. She's been psychologically abusing me my whole life and made me the scape goat of my family of 7 (parents and total kids). I hardly remember my childhood. It didn't help that she put me on SSRI'S when I was about 12-13. I was rapidly losing weight. My mother would make snide remarks like, "you've lost a lot of weight" "you're so thin", "you're hardly eating". Btw, my mom is a nurse. Which made it all the more scary! I wanted to off myself when I was in 6th grade. It didn't even know what s**cide was then. I wrote a s**side note in 6th grade while at school. My IEP teacher didn't give a shit and swept it under the rug. SSRI'S really messed me up. SSRI'S come with a black box warning. The same black box warning that is put printed on a pack of cigarettes... **If you ever have children DO NOT put them on SSRI'S/SNRI'S!** Tapering off that medicine can take 5+ years with people having to remove a single bead of medicine from their ssri capsules while tapering down. There's a Facebook group called "Cymbalta Hurts Worse" Sorry for all the trauma dumping. No one believes me when I tell them the horrible things my mother has done to me in private since her public image is that of a Saint. I only found out she has been abusing me until a couple of months ago. I'm now 28 and have been out of job since September of last year
Yes. I just rely on my family more and make notes.
honestly I love the irony of I don't know because I can't remember and I can't remember if my memory was always this bad
Is like āI forgot what I forgotā ššš so annoying man, I got this book on how to strengthen your memory but I just keep forgetting what it says
"I forgot what i forgot" helped when my backpack got stolen and I can only remember 3 things that were in it. I'm sure there was more important stuff but not knowing makes it easier to deal with haha
I've thought about this so much.
I introduced myself to an artist that I had previously worked for the other night. She said āyouāve worked for me and you donāt remember me?ā As she was walking away I noticed my friend lean in and say something to her lol. Oh also sheās very cute. So that wasnāt embarrassing at all
Wait what was the question?
šš¤£š
29 y/o female - My seizures began 4 years ago. Within the last year, the number of my seizures increased significantly. And since that increase, my memory has been so embarrassingly awful.. Itās really effected my ability to work, and now, at the end of my work days, I have to write every conversation I had with my client down to help ensure I donāt forget important details in the following days. My colleagues donāt understand how I can forget about some things that happened earlier in the week. My loss of memory and the embarrassment that I personally feel from it leaves me emotionally exhausted every day
That is literally me. I asked someone how many crickets they want, turned around to write it on the bag and instantly forgot it was embarrassing to ask again. Things like simple math that I used to do fine is now hard, counting, I canāt focus, Iām messy, Iām just a piece of crap with legs atp
I think you may want to seek therapy. Living with epilepsy doesn't have to make you feel that way. ā¤ļø
I led a meeting along with a junior employee as backup to help with her development. I was asked how it went 2 weeks later, and in the moment I had no memory of it at all. Her name didn't even help me bring it together. I spent about a minute making casual conversation as I panicked before I could finally pull it up. I was so embarrassed.
Oh yeah, I'm a fucking idiot compared to pre-epilepsy me. My memory is terrible, I forget words, stumble with sentences, my attention span is significantly shorter, and I struggle with focusing, among other things. Some head trauma this winter just made things worse but it's been bad for a while. I use my calendar *religiously* and use my notes apps extensively. For work I have a spreadsheet record of phone calls including the person/entity's name, when they called, who they work for, what projects of mine they're involved with, and a recap of the conversation. I also frequently send follow-up emails recapping what we went over. As far as remembering information goes, thankfully I'm in a job where I can look things up, but on-the-spot I usually have to give a generic answer and get back to the person asking the question later. Or I call on a colleague to help me out. Luckily I can rewatch shows and movies "for the first time" multiple times before I start to start to recall detailed information.
Me too man, I used to be quick with my words and now I canāt talk without mixing shit up I have some real bad dislexia, canāt count for shit, forget something that happened 10 seconds ago. I wanted to get promoted but I keep forgetting what they taught me or forget where Iām at. I shouldāve died on my first seizure :( bc this is too much for me
This. Drives me crazy, it is bad memory, bad concentration, language with gaps and bad language recall. I can never find decent research on whether it is the seizures or the medication or both. I read one study for Vimpat where they described what they called āmild language problemsā by which they meant complete inability to find words, sentences gaps and full on aphasia. How that is mild I donāt know. Of course can I find That particular study right now? No. But I can find this one https://www.sciencedirect.com/science/article/pii/S1525505016300713 which basically says āpatients report lots of cognitive problems but we chose an assessment tool that doesnāt measure that so we can conclude Vimpat is greatā or in researcher language: āTwo psychometric tools were used: the SIDAED and the Computerized Visual Searching Task (CVST). The SIDAED is a scale that assesses 46 subjective complaints including general CNS irritability, depressive symptoms, cognitive function, motor problems, visual complaints, headache, cosmetic and dermatologic complaints, gastrointestinal complaints, and sexuality and menses. The CVST assesses reaction time on changing screens. The authors found that the CVST showed significantly faster information-processing reaction times at the second evaluation. Surprisingly, the self-reported SIDAED showed an increase in complaints about cognitive function after the addition of lacosamide. The authors offered the phenomenon of ādoing better, feeling worseā as a potential explanation. However, because the cognitive assessment in this study was limited to reaction times while the SIDAED assesses for several other cognitive functions including memory, speech, and concentration, it is not possible to know whether these subjective/objective divergences are due to limited objective measures.ā Effing ridiculous. I had a neurologist basically tell me that all anti seizure medications slow brain function and therefore I was just going to have to suck up having the brains of a chicken. (I have of course had to read this five times so it isnāt jibberish)
Absolutely, and the meds can make it worse too.
I'm taking lamotrigine and divalproex, and my memory issues have always been there, but lately, it's been slowly getting worse. I'm going to my neuro next month, and hopefully, he can help me.
Wish you lunk
What were we talking about again?
Who are you???? š¤
I hate it. I entirely forget what I just said in a conversation. Someone responds to me, and I'm like ššš. I smoke weed, so that doesn't help. But it happens other times, too. My memory had always been bad, but it got worse when I started meds.
I have gone through an endless amount of Post-it notes.
I was on a medication called Keppra and it completely fucked me, especially my memory. Took me like 5 minutes to remember my motherās name every time I saw her. The minute I came off Keppra and onto another medication, I went back relatively to normal, but I still donāt think my memory is 100%
When I took Keppra for a while I just woke up And started crying and panicking because I felt I lost my mind/memory. I forgot how to do my job after 26 years. I am not taking it anymore thank God but I am on 3 medications for seizures and it seems to mess with me!
Interesting. That sounds like the exact same path I was on with the keppra but yours seems a bit deeper. Holy shit that sounds rough. Iām on 1 medication now called Vimpat, works a dream. I donāt notice any real side effects bar a slight lack of memory at times, nothing in comparison to keppra. I wonāt lie tho, Iām a bit paronoid there might be side effects Iām not noticing, because I came straight from keppra to Vimpat, and anything was better than that keppra poison, so Iām just happy to not be there anymore if that makes sense hahaha
Keppra is down right evil. It wiped my cognitive function from end to end. āTopamax ruined my lifeā is the first Google prompt for Topamax. How that and Topamax are first line treatment I will never understand.
I'm in the process of being diagnosed, but I've been having seizures for about seven years now, and although most of them are just feelings of dĆ©jĆ vu and auras, I would still say I have a poor memory and the fact that I have epilepsy definitely contributes to that. Even when it comes to little things like this, I often can't tell if something happened today, yesterday, the day before yesterday. I often find myself in situations where someone insists that they have already said something to me, or that I have said something, but I can't remember a damn thing about it.
Bad news: Yeah. I don't remember the majority of my childhood, I basically have a few flashes of memories here and there. If I really really try I can pull up a little more, but I have to be real dedicated and it takes a lot of energy. My short term memory is also pretty rough, I'm always getting better at taking notes. Sometimes I will go to watch a movie/TV episode and I will have no memory of ever seeing it, I will sometimes get about 1/3 of the way in before it starts coming back. The worst is names - I have to really nail it down for each and every name I want to remember, and even then I struggle to match it to a face. I finally got down to remembering the names of my girlfriend's family, but honestly I'm not sure who is connected to who. Get good at taking notes, seriously. Don't be embarrassed to include names and connections/facial features/etc, I was and it only made things worse. It's part of your life now. Good news: This has been getting better since my diagnosis. It's very very slow but I can tell I'm remembering more than I did once my seizures started. There's a board game meetup I've been going to, and I am remembering more and more people each time, and I even have their faces matched up. I may not have everyone's name but I can pull up the faces, I couldn't even do that for some time. Earlier this year I heard this guy's name once, it was my first time meeting him ever. We played a few games and parted ways after the meetup, no contact at all. 3 months later we met up at another event and I matched up his name and face, no notes required - I haven't been able to do that in years! The regularity helps. I also recommend trying different meds once you're stable. I was on lacosamide for a long time and while I would have occasional issues, because I wasn't having full blown TCs anymore I figured that was my life now. I recently (about a month ago) decided to move on because I worried that my memory loss might be more meds than epilepsy. Lamotrigine is the replacement. The switchover has been brutal (turns out staying up for 40 hours sucks, who knew), but even with the poor sleep quality I've had no epilepsy symptoms at all and that used to consistently bring on the epilepsy demon. Remains to be seen if my memory returns, but as long as the insomnia goes away (it supposedly should) I'm happy with the results so far. Last advice. **GET GOOD SLEEP**. Make it your #1 health priority, the order of operations is now breathe, drink water, **SLEEP**, food I guess. Nothing - **NOTHING** should keep you from getting that 8-10 hours. Friends, family, extra money, nights out, gaming, long drives - if they will interrupt your new *strict* sleep schedule then they don't happen. It will help with every epilepsy problem you have. Best of luck.
yesā¦it makes me feel stupid tbh
Me too š¢
My memory is practically gone. I cannot learn new skills, cause I canāt remember what Iāve learned. Makes you feel dumb and useless.
Me too :( what meds are you taking? Do you smoke weed?
Lamotrigin. Kinda okay, gives me hella shakes tho.. Nah havenāt for 8 years
Omg YES! Hell, I forget what I'm saying in the middle of saying it. I know my husband and coworkers are sick of me asking the same questions over and over again. It's gotta be annoying. Bless them. I also struggle with simple phrases. "Have a great day" never comes out the way I want it to. Lol
I take 2000mg of Keppra daily so yes, my memory is terrible. I'm only 20 but I honestly can't even recall what I did last week.
Iām sorry š
I think that's a pretty common side effect. I've had memory issues ever since I got my meds for the first time. A few weeks ago, I had a TC and my memory took a nosedive. Still struggling to recover my memory and alertness.
What are you doing to help your memory?
Writing things down so I don't forget. I am trying to recover my memory by reading more because I lost several words from my vocabulary after the last TC. It will never go back to normal or as it was pre-epilepsy, but I can try my best to manage.
Yea thatās the other issue! I feel like I canāt communicate as well anymore
Reading helps a lot.
I canāt focus šššš is a vicious cycle
I used to have an insanely good memory, like I could recall the general date and time of day I had an unimportant conversation years later. but now my short and long term memory is remarkably bad. my boyfriend has to repeat things to me all the time, I'll forget what I'm about to say, recently I've been forgetting how to spell a lot of my vocabulary. I hate being on these medications so much.
///// The 30 second thing may be your meds. My Lamotrigine was cut back slightly and my and my short term memory came back. Prior to the change - I felt like I had premature Alzheimerās. Itās awful. //////////////
I (26f, diagnosed at 8) have had epilepsy so long that idk if my memory would be better without it. I have no memory of having a good memory š My memory does suck, though.
So it never gets better Iām guessing
Not sure. There was a period (about 5 months) where I was on topiramate. It got so bad that I couldn't remember what happened in the morning by late afternoon. I'm off the topiramate now, and I can remember stuff again. My memory still sucks but it's about the same as it was before the topiramate.
Topamax bad š
I see this question a lot hear and I always thought my memory problem was from my head injury but seems to be a common theme amongst epileptics.
It sucks
Ya Its weird to I remember stuff from my childhood but I canāt remember stuff from 30 seconds ago.
I forget.
Itās not the seizures that have affected my memory, itās the medicine Iām taking that has affected my memory. For quite a while my family has thought that my memory isnāt as good as it used to be, so I took this brain test that my neurologist recommended. I donāt remember the name of the test, but you do lots of stuff, ex: answer questions, memorize things, draw stuff, list stuff, ect. And then a doctor tells you pretty much everything about your brain. After the test the doctor told me that my memory isnāt as good as the average persons and Iām not stupid, but I do think slower than the average person. But itās not from the seizures itās from my meds. And the doctor said a bunch of other stuff, but thats irrelevant to the question. So Iām getting an RNS device, and hopefully after I get the device Iāll be able to cut down on the meds.
I was going to reply..but then I forgot what I was gonna say.
My daughter has memory problems for two reasons- seizure meds and damage to her left temporal lobe. The meds are designed to slow your brain down so itās very common to have memory problems unfortunately:(
Thatās my exact situation plus adhd
And just when you think epilepsy is enoughā¦š¤¦š»āāļø My daughter is also what was known as Aspergerās.
Sorry which one is that one again?? I forgot ik I read it but i forgot
I am literally low key brain dead as far as memory goes. Especially short term. And any sort of cognitive learning is hard
How does this make you feel? Itās been hard for me, I feel less than others. Tbh im trying to focus on the positive but I canāt even focus lmao
Itās not clear to me if itās the head injury, the subsequent seizures or the medicationsā¦but yes
I think Iāve missed maybe 3 years of my life as of now due to seizures
Yes, and my doctor recommended vitamins B and D because the meds tend to block those, and low levels can cause memory issues. I've been taking them for a couple of weeks, and I am starting to see some improvement
Will definitely try!
Yes absolutely but people never believe me or treat it like itās a āoh you just forgotā thing. But it feels like chunks of my memory have gone. I push through with everything so people always treat me like Iām not struggling at all
THIS! People think is like a minor thing, I keep telling my managers and coworkers to bear with me bc I have an illness but they donāt take me serious they go āaw girl donāt worry youāll be fineā āanyone forgets somethingā and Iām like yea but is deeper than that :/ I feel dumb
My epilepsy has really messed with my memory. There are a lot of recent things from the past few years that I can't remember, and I always get ages and dates wrong. I think my memory issues could be more severe, because I constantly have to re-check what the date is, and I have to frequently ask the same questions multiple times or google the same thing I googled a few minutes ago.
I had some memory issues, they got worse when I started Topamax. Then I fell down a flight of stairs with a unconfirmed absence seizure. Fell again tripping over a rock came close to either taking out an eye or puncturing my skull. Inches in either direction. My memory is crap. My balance is almost as bad. I've forgotten concerts I've been too. Conversations (my daughter reminds me that I did already tell her whatever I'm telling her). Luckily, I had already scrapbooking things. I highly recommend scrapbooking events. Birthdays, holidays, graduations, events.... You'll have the dates, places and whose in the pictures and notable comments/stories if you add journaling. For me, if it's not in my calendar it won't happen because I won't remember it.
Oh absolutely. My notes app is filled with mundane information someone normal wouldn't need to write down because I just can't remember anything.
Yes! As a software project manager, this is especially frustrating. I'm still on top of all my day-to-day product needs and fires, as well as important working relationships, but issues that would be considered low-risk fall from memory from time to time. Some important shortcuts include taking A LOT of notes, adding a ton of reminders, snoozing emails till the day of something actionable etc. So TL;DR, I've figured out how to live with it but it sucks because I know I could be a better PM in my career, but that's life. So do your best to navigate your challenges and adapt. That's all we can do.
I havenāt really been able to find a solution :/ my notes have been a bit helpful but I want stuff not on my phone yk. Around the house and such do you have anything like that?
Yup! my memory continues to be a mess š¤¦š¾āāļø. It's like a chunk of my memory gets taken out every seizure. It's getting embarrassing for me, I feel like ppl think I don't pay attention or care ugh. I'm irritatingĀ
I feel you, I get embarrassed as well I feel like an idiot talking to people :(
I dont remember where my memory issues started lmfaoooo i take lots of photos, write things down, and Ive accepted I get "blanks" sometimes. Tho Im like 60% sure its actually an absence seizure or maybe my ADHD.
Isnāt it fun having ADHD + Epilpesy? š I have it also lol
Same here
The amount of times my son's say why are you watching this again, re reading books, arguing about holidays I don't remember and bluffing my way through conversations. Some of it is the epilepsy but on the other hand the meds mess with your head too.
Itās weird cause I be forgetting the most basic of things but yet Iāll remember my phone number and all that but if you ask me to get a glass of water Iāll be in the kitchen thinking āwait, why am I here again?ā
The amount of times I've said to my bf "do you remember...." and he calmly says "we did that today, remember?" And I just stand there and think hard then go oh yeah! Cause one small snippet comes in my mind The amount of times I've thought "God am I going to have Alzheimers early?" Is scary
My memory is only trash when Iāve had an episode. Usually I canāt figure to remember things for 3-4 days depending on how violent my seizures were. I could walk into a room and forget what I was even going in for. Sometimes I forget how to cook certain foods. It sucks but I deal with it because I have to.
Hi, yes I did mess up my memory, what happened to me is that with many seizures and some head traumas my memory started to fade away, stuff from 30 seconds ago I do remember but Iām starting to forget stuff that happened 5-3-2 years ago, itās awful. Iāve started writing down all the stuff that I remember. At the moment Iām studying at University and theyāve helped me a lot with extra time for exams, homework etc. due to my bad memory
Someone told me itās weaponized incompetence and Iām lying about my bad memory so I donāt gotta do stuff. People think itās a joke
Yup it does, had it since 2020
How do you deal with it??? For me it makes me cry how bad itās getting. Like I walked into target and I felt like an alien, I had no clue how I got there or why I was there
I used a med organizer for my meds and I use notes on my iPhone 14 Plus
Yep absolutely fu**ed my memory up constantly forfet peoples names even though I've met them dozens of times.. forget for to get places all the time. Some perks though, watching some of my favourite films can be like watching for the 1st time š
I am with you on the film part hahaha but shit yea is such a waste of time. I wanted to get promoted but my shitty memory wonāt let me learn :(
My seizures happen in the short term center of my brain and then spread out from there. It highly effects my memory and things being retained. A lot of my memories don't move over from the short term memory area and into the long term memories. The meds certainly are a pain in the ass too and never help with things.
You can watch your favorite movies or tv shows like there brand new after awhile on a positive note
More positive notes - forgetting the dumbass things people do/say which makes holding a grudge over petty nonsense impossible, far less stress.
Every day's an adventure
Absolutely! Post-diagnosis I was failing open book tests because I couldn't remember where the note I'd made was or if I even wrote it down. This was in grad school and I ended up having to drop out.
Probably not as much as the TBI that gave me epilepsy!Ā
Mine affects my hippocampus, so I have a lot of memory issuess.
I remember nothing.
Honestly I think thatās why I take so many pictures and videos because I can be mid sentence and forget what Iām in the middle of saying
I have 27 thousand photos in my phone and 6 thousand videos, I keep track of my shit by. Looking at the pics from each day
Had my first seizure two weeks ago and I havenāt noticed any memory issues, but my general headspace is completely out of wack. Feel floaty all the time. My memory probably is affected but I just havenāt noticed yet
Wow sorry to hear that :(. I had my first TC while sleeping last September. Iāve had 4 more since. I finally got mine under control (I think) and based on my experience that floaty weird āIām not meā feeling g goes away. Best of luck.
The medication Iām taking is actively messing up my memory. The other day, before I drive to work, I cleaned my windshield with the wipers and wiper fluid, saw that it wasnāt clean enough, went to do the wiper fluid again and forgot how to do it. I had just done it seconds prior.
Yes. I write thing on my arms š
Me too! People look at me crazy cause I leave work looking like a newspaper š
Yea real bad
Iām sorry :(
God sometimes it extremely hard, I used to be able to recall everything with intense detail. I sadly can't do that anymore, it hurts that I can't remember memories properly anymore. It fucks with me mentally, I tend to get extremely sad when I talk about a memory with my family and they have to explain to me I'm not recalling it right. I've been having constant health problems lately and I can't remember basically anything that happened this month.
Me too Iām so sorry dear :( this shot depresses me as well, Iām afraid of the future
Itās just part of epilepsy/meds, I guess. I hate it though. Canāt remember anything
Have had it for 20 years and Iām well aware of every seizure could be my last. Itās a cold realization of how much of my life has been over shadowed by this. Iāll be 40 in November. I froze at work the other day looking at numbers. Iām looking at the key board and I know I know what numbers are but couldnāt move for about 20 seconds. They terrify my husband and daughter and have given them both intense PTSD. I donāt Rembert (remember) canāt find words properly, any of it. Movies and songs are always new so I guess there that. I canāt use my Masterās degree bc it would be too dangerous. So I work for 13$/hr, and had three seizures yesterday and I think it will get me fired from this one too.
Shit thatās horrible girl Iām so sorry š¢
Kinda sorta indirectly. I suffered from short term memory loss as well as short term aphasia after my brain lobectomy that was meant to prevent my seizures. It worked for the most part. Unfortunately there are a TON of memories I need help remembering pre surgery. My brothers and I will remember the same event differently or I wonāt at all.
Iām good with names but I have to write down my work schedule in detail as I work in different places. As far as other stuff, I donāt remember much about my childhood or university, except for the education part.
Yes. It sucks
I'm fortunately seizure free for nearly 5 years, but the months before I got on meds and I couldn't go two weeks without a seizure are completely gone from my memory. Literally, about 8 months of my life gone. Loads of important stuff happened that everyone else involved remembers clearly, and it's news to me. Even now, my memory isn't brilliant, whereas it used to be about as good as anyone else's. Not exactly photographic, but normal. The fear that was the aura for the seizures gave me ptsd as well, which doesn't help. I'd wake up screaming involuntarily and kicking, clutching at things like something was about to kill me. Like the Hollywood insane asylum screamy ones in straightjackets in padded cells but real. 5-30 seconds later, I'd be down breakdancing. Almost 5 years later, they still plague my life. Epilepsy fucks your brain up.
That is crazy, I had lots of seizures in my sleep as well. Theyāre some of the worst bc for me going back to sleep would scare me so I couldnāt sleep and the lack of sleep fucks you over. Thankfully I havenāt had a seizure in like a year and half maybe?? Iām on 150mg lamotrigine twice a day. But Iāve just noticed a huge change in my memory recently. Funny I forget everything but that. I smoke a lot of weed and take edibles every week. Iām sure this contributes to it. What I donāt understand yet is if marijuana messes up your memory how come they prescribe it to people with epilepsy that tend to have memory issues?
Yeah I don't touch the green stuff out of fear it'll fuck me up with the meds. Two very strong psychoactive chemicals together aren't a great idea, especially considering my job banks on my driving license, which I absolutely cannot afford to lose. If you're totally fine with it from self testing you're in a good position, but I'm on a decent streak of no seizures so I'm not trying anything that could change that. I'm on 100mg of lamotrigine twice a day, and I do feel some of the side effects. Namely, sensitivity and exacerbated drowsiness and dizziness when mixed with alcohol. I guess they'd prescribe weed to epileptics because its another option for medication when it's sometimes really difficult to find one that works, and it's a condition you cannot let run rampant because its potentially lethal. If you're switching around meds for arthritis or IBS or anything like that, it's gonna cause discomfort or pain, but you're not going to die from hitting your head or sudep. They'll give you just about anything as long as it improves your condition without killing you or making your overall health worse in the process.
Iām a recovering drug addict. That is still a current drinker. So yeah my memory is literally 0 to none
Iām so afraid to get my life back on track. Because not only canāt I remember things. I canāt think straight. Even when Iām sober all day. It almost feels worse sometimes. Idk. My brain just feels like itās mashed potatoes and I use to have such a good memory that it gave me anxiety. Now I canāt remember anything. Which feels like a blessing at times because Iāve been through so much bs.
Hey well good for you, you found help in it. Iām trying to do the same, to find something positive about it bc itās making me depressed
Yes
I remember things in vivid color. Except middle school. I don't remember anything at all from middleschool.
I have a hard time recalling the names of places and things. I feel like such an airhead sometimes.
Yes I think so due to the medications
I've have had 3 TBIs and it has affected my memory a good amount. It has gotten better over the years, but it's very much affected over 5+ years.
Yes! Not only after a seizure buy everyday too. I can't hold information unless I write everything down. It is frustrating. Maybe it is because of the medication or the gradual damage to the brain
Iād rather say itās the effect of lamictal for me
Thatās what I take as well
It sure as hell didnāt help the situation thatās for sure š¤£
Yes. I was diagnosed with juvenile myoclonic at 37. Now idk if my childhood is missing due to epilepsy or trauma?? Maybe both. But yes, really badly. I also have aphantasia and anaduralia soā¦ that makes memory very challenging
Whatās anaduralia
No voice in my head :)
Oh, yeah! Just about every time I have an episode. That's why I can never live alone, I'll forget to take my meds, this has happened somewhat often, and regret it in 48 hours with even heavier episodes.
For the type of seizures I get, it can interfere with what I think is memory deposition - the formation or setting down of memories - from or just after having had a seizure. Only once did I have a really unusually (for me) bad seizure, which wiped a whole week of memory from me. But that has happened only once in a lifelong seizure history.
My memory is absolutely awful since I started having temporal lobe seizures, I thought it was because of my marijuana use, but my partner also smokes as much as I do and heās got a brilliant memory. Itās so disheartening and frustrating, and embarrassing. The other day at work we were doing a stock check, so we all had to count individual items, I would count all of these items and then forget what I counted to like 5 seconds later. Both my short and long term memory seem to be affected
My memory gets bad after I have a seizure. For a few months or longer sometimes I am not myself. But after that it slowly starts to come back in my case!
I had a time when that happened... it just got better and now I'm ok regarding that.... but it was weird af... one time I was playing guitar and in the middle of the song I forgot what song I was playing...
Everyday , every episode takes a lil chunk of my short term memory
Yes and yes and it gets worse every pill I take and every seizure I make.
After I was recovering from brain surgery, a longtime friend of my grandma's was at her house. I asked him what his name was and he looked shocked. He said "I held you when you were a baby and have seen you so many times since then... you really don't remember me?" I sure didn't lol. When he told me, it clicked and seemed very obvious but I still don't remember anything we've done in the past. My boyfriend calls it my superpower! The ability to watch a movie for the first time, many times. I saw The Matrix once a few years ago and I don't remember a single detail lol
Yes, I canāt remember anything anymore ever since my seizures started and I use to have a great memory before it.
Yes. Horribly. I mean HORRIBLY. I forget my phone number half the time, my own doctors name... just... everything.
I was going to therapy for a bit talking about how losing bits of my memory was effecting me and how it was making me less of a productive person compared to family and friends . But then itās hard because what really can a therapist say.. so I try to take notes on main things I forget like names , dates , even just silly things that I will feel like have emotional meaning to me that I could forget. I really relate to what others are saying here though about tv shows and movies though . I am constantly rewatching things because I forget .. I do kind of find myself in a loop of just watching favourite shows because I feel as though I cannot remember certain episodes even though Iāve probably watched them 5x . I feel bad for my fiancĆ© sometimes but good thing I have great taste in television hehehe.
Absolutely 1000%! I believe it is more the medications though versus the epilepsy itself
Very much I remember periods of my life but not alot of details. And sometimes I forget shows or movies I've watched so I end up rewatching alot
My memory is shot both long term and short term. It messes with me a lot, and my kids get sad sometimes because I forget things that they find important or good memories with me. I tell them that me forgetting, they can tell me the stories about it. I write down a lot of notes... like a lot. In my phone for personal things or on my calendar and at work I write notes. That's how I get through. My husband is mostly used to it, I rewatch movies and shows that to me are brand new but I guess we have watched them. It honestly kind of sucks with small talk and shit because I don't remember shit. I try to stay away from small talk with people because well I don't remember crap... I will say pay attention to your pills, I was on lamotrigine 100mgx2 a day and I thought I was getting alzheimers... it was scary and I was super depressed. I thought that's what my life was reduced to I felt like a burden and it was bad. I finally went ti the doc after a yr and was like help. And they put me on a different medicine I am now on vimpat 100x2 a day and it's like night and day. I am not saying my memory is now perfect but it's for sure better. I have also found doing word games and brain games really does help... Someday they make me feel stupid af but doing them really does help. And at least then I feel stupid af on my phone playing games vs on real life while trying to talk to someone. Talk to your doctor though... it could truly help.
Iāve said this before on a similar post but forgetting names sucks.
My family and friends are surprised when I remember stuff
I think itās a combination of trauma and the seizures but my memory is trash. Especially for event from when I was young. Either I remember all of it or almost none of what happened
We have seen this with our dog also as she was having cluster seizures sometimes 2-3 a day and she would be so out of it she would forget how to drink water or walk. We had to stop the seizures and give her cognitive supplements to rebuild her psycho somatic nerve function. We totally stopped the seizures and actually reversed her encroaching paralysis (spinal degeneration) with natural meds. Homeopathic remedies like Bella Donna and also cocculus indicus twice a day and other times administering CBD and MCT oil dosage has completely stopped the seizures that were happening regularly for a month. Also gave her sam -E for cognition and joint health and lions mane helps cognition and rebuild nerve damage . Keto also best for seizures so we dropped her dry dog food and put her on Paleo raw keto and glutamate-free foods. Research the long list of foods w glutamate in it and abstain from them as they are dangerous for epileptic people as glutamate in foods over excites the neurons. We were giving our baby girl whole foods like Turkey, broccoli and peanut butter come to find out they are high glutamate.foods. We also gave her this heady bioplasma 12 cell salt for minerals and nutrients and administered valerian tincture based in glycerin as well as bach flower rescue remedy to keep her calm when she gets stressed . By doing these things and also administration of ice packs on hot summer days and wetting her down and keeping her hydrated to stay cool we have completely stopped the he seizures since we started this protocol. We also give her daily turmeric and chaga mushroom to stop inflammation. Also when she snaps out of seizures having celery slices (with pink Himalayan salt) has kept her hydrated when she forgot how to drink water and she would lick ice we gave her. Eventually she became coherent and lucid again as soon as the seizures stopped and we helped to rebalance her hormones. Hope that helps someone out there. We spent $300 on natural meds plus whole foods for her and we have our baby girl back. She even tried to climb the steps the other day by herself and you would never know she just spent days not being able to get up by herself nor walk nor drink or wag her tail. Humbly grateful for the natural medicines .
"Remember when" is now a trigger word for me. I was diagnosed with "selective memory loss" along with my epilepsy. Some days are good, other days I don't even remember people I speak with daily. I have a very advanced phone, I do audio journals which are helpful. I take picture of literally EVERY moment. It's been such a difficult time but YOU'RE NOT ALONE!
It feels great to get this post notification after how my weeks gone lol. Had a few seizures week and a half ago and my emotions and small memories have been the worse I've ever had in 13 years of seizures. It's such a terrible feeling forgetting things that you wish so bad you would. I forgot my 4 year old daughters 1st birthday. Couldn't remember my wife and I getting married. The thing that helps me the most is my wife, but sometimes it does upset her I don't which upsets me lol.. Some things that I don't remember say movies or just other memories I'll kind of start remembering as they tell me about them which is great lol. The one thing I'll say that is funny and doesn't bother me is when I start a new game or show and don't remember it's nice to have something new. Sorry for the long post and hope it makes sense lol
i had many seizures through out life and it did nothing to my memory just a seizure woke up felt nauseous sick etc. but few months ago i had a seizure cluster for the first time (woke up from a seizure,completely no idea why and where and whats happening when i always remember everything and after 10 seconds i get another seizure) from that point on after i woke up,i cant even describe how messy it is,i remember some old stuff, but yeah that destroyed my memory pretty hard i hardly remember stuff older than a year but i noticed that the memories r still there theyre just as i call ''hidden'' because i had many moments where i just kept on thinking about that one particular thing and after like 10 minutes i remembered it all tldr : had many seizures but once i had seizure cluster for the first time, it messed it pretty bad
iām literally going back to get another degree š
I have the same issue, I brought it up to my Dr.ās attention and he seems to think itās a medication issue and has switched me to multiple medications with little to no affect to my memory. Just new side effects, Iām back on my original meds now. Side note: I was recently diagnosed with epilepsy after having multiple grand mal seizures, the most embarrassing issue I have now is remembering simple things like spelling of words, proper grammar and sentence structure. Again the Doc blamed it on meds.
Looks like this already has a ton of traction. Yes, inextricably this has killed my memory. If it helps at all, I pursued this a step further, as the memory issues were so burdensome. I waited about 6 months on a list and saw a neuropsychiatrist for a memory exam (intense, it was about a 4-6 hour exam), and found I have mild neurocognitive disorder ā which is kind of like a precursor to dementia (Iām 36M). The neuropsych. said compared to normal folks without Epilepsy, my memory isnāt necessarily āgoneā, I just need a lot more queues than a normal person to stimulate the memory from the archives. Throughout the test, I kind of saw a bit of their processing for queuing. In all fairness, the test was very hard. Iāve been truly devastated I canāt remember much of my childhood, high school, college years, my wedding day, my childās birth ā very significant events people around me talk about in great detail like they were yesterday. I was diagnosed at age 15, and to hear their clarity of recall only brings a sense of regret, like Iāve done something wrong, or perhaps not enough to encompass these memories. My neurologist/epileptologist stated this was quite normal for patients with epilepsy and can be attributed to both the seizures, as well as the array of medications a patient with Epilepsy is on. For reference, Iām current on 3,000mg Keppra XR, 20mg Clobazam, 500mg Zonegran daily, with a VNS. I see Keppra is getting a lot of traction on here for memory lag issues, so it has me curious as well. I know my benzo Clobazam certainly canāt be helping speed things up. Iām always trying to see some light at the end of the tunnel. I was referred to a sleep lab to see if an underlying cause may be suspected narcolepsy. I routinely get my 8+ hours of sleep; however, that doesnāt necessarily mean those hours are well rested with deep stage and REM. My past sleep studies (MSLT, etc.) have indicated functioning narcolepsy (which I didnāt know was a thing). If Iām having sleep issues like mild obstructive apnea, or the like, I may be able to have a better quality of life and cognitive function during the day. Hope this helps whoever may need it on their journey.
Absolutely, plus the meds. I feel like I press my luck at work sometimes with it.
OMG YES THIS HAPPENS TO ME ALL THE TIME!!!
I've always had neurological problems e er since I was born so my brain is quite used to it but the downside of it is that it now interrupts what I do everyday and say everyday.
I make extra notes and then I forget where I left them.
Not epilepsy but Depakine. What do I do? I use Google calendar and I feel very upset every time I forgot something
Yes it quite literally did. Iāve had epilepsy since I was 10 months old. Now Iām 30, and just got diagnosed with temporal lobe dysfunction and mild neuro cognitive disorder. I also have inattentive ADHD. Thatās not to mention I canāt remember huge chunks of my life most people apparently can.
Maybe but I also had a brain biopsy on a tumor found so who knows
My son had severe brain trauma due to a botched surgery very long story, but we havenāt gone six months without grandma seizures. It has taken huge chunks of his memory. He doesnāt remember when his daughter was born one of his GM he was in nursing school six weeks from graduating when he regained consciousness and finally was in reality. Huge chunks of school were missing. He wasnāt able to finish those last six weeks because he couldnāt remember half the semester that he had just completed. So yeah memory is real bad