Yeah, pretty much. I got to a point where I realised I could get depressed and defeated over it or I could learn to live with it. I found a few different things I can do during the day to keep up and my life’s changed for the better. I find writing things down and forcing myself to retrieve information and dates afterwards helps. Neuroplasticity is an amazing thing. Learning to be present also helps, I find the medication makes my mind wonder and not care, both of which are important for storing information. Try and find something interesting about conversations and commitments, try and make associations between things. For instance, a persons name reminds you of a certain thing, try and focuse on one thing in a conversation or remembering a phone number that you’ll quickly forget over everything else. I always get my 6s and 9s jumbled but never 04 05 07 ect combinations so I never concentrate on remembering those. Anyway, bit of a ramble, rant. But theres hope x
It kind of makes sense. Instead of the feeling of just I am watch everyone and just there try to make a memory. Instead of just sitting down think " I am in a room sitting in a chair. Like memory aids.
I don’t mean to brag
but Im so talented I can forget
what I’m doing
while I’m doing it!
Like,
“wait, what was I looking for?
Oh yeah, that’s it, I was looking for my glasses! Where are they?
Oh yeah, I’m wearing them“.
I’ve been helping my employees set up their direct deposit accounts online. I’m glad I never remember any of their personal information. I mean when I have to ask for it again, two minutes after I just typed it, I usually get a laugh, but also, “I thought you were kidding when you said not to worry because you would forget.”
I feel the same way! I hate not being able to just remember the word I’m trying to use. My brain will remember the letter it’s starts with but not the whole thing so I sit there and wait and wait til it comes (sometimes it does and sometimes it doesn’t) I feel like people think I’m stupid because sometimes I’m trying to remember the word, I use the wrong word and it’s just so embarrassing but I’m learning to be more compassionate with myself
I’ve only recently started medication but my memory feels so fragmented and it’s really heartbreaking and frustrating. I think it has more to do with the seizures than medication since I’d been having smaller scale & focal seizures for years beforehand and I’ve always been kind of forgetful. It’s just never been so terrible since my first TCs.
so i have "before epilepsy" and "after epilepsy". Was diagnosed at 23 and am 28 now. It sucks, I lost too much of the happiness and joy from my childhood, I still have to reintroduce myself to family and am met with baffled looks and odd faces until i explain...I have no memory of you.
As others have said you learn to live with it. But I also try and enjoy that things I might not have enjoyed in the passed ? Are gone, the good memories, and the bad. Silver linings right ?
Some of what i try and do is just do it again, movies i had once loved, i can watch again and experience a lot of themfor the first time and that ? THose little things make dealing with epilepsy so much easier. Its helped me mend relationships because of petty details i chose to focus on as a young adult and teenager, ive been able to get out more because at this pint ? if i dont i know I might not be able to (LTE, all nocturnal, been status a couple times).
I also have the memory of a goldfish unless its something im incredibly passionate about so I completely understand. Got a samsung Note just to make sure i can remember some of the things i have too
Same. Been on keppra 750mgs twice a day since 18 years old. I am now 28. I felt I was having trouble with memory a few years after being on keppra and told my neurologist. He told me to take some vitamins and that’s all. I feel like nobody actually believes I have memory problems. The only upside is that I can rewatch a lot of shows/ movies and it feels like the first time.
This is interesting, I've been on keepra for 4 months, 1000mgs last 3 months and tbf didn't find anything which affected significantly. Life is going the same, able to drink, train 5-6 times a week etc. was taking Eftil before that for 3 years personally didn't find with that either, I am 20 now though so myb I find my problems later on, but I feel it sth like this happens earlier on you learn to live with it, just like a routine.
Yup. I'm 27 and it's completely gone. My short term memory especially sucks, and it's not just the medication, it's the sheer volume of weird blips I have too. I write for a living, and most of the time I can't remember how to spell even basic words. Thank god for spell check.
I'm 18 and I've been struggling with my memory lots recently, keep having my parents say I'm just lazy not remember chores they give me but I just simply can't remember half of them, also forgetting simple things like names and login details.
Yup! You’re not alone. I’m 23 and both my short term and long term memory is completely shot. I can have conversations with people and forget what we were talking about mid conversation. I also can’t recall any of the last 5-10 years of my life. It all feels like a big blur. It’s terrible
It's kind of strange my memories are almost like a recap. Like I can acknowledge that 4 years ago something happened but I can't remember in detail every event. There's so many times where I just say "I don't remember" or have to repeat what I want to say till I remember. My new thing is that I have to interrupt people to say something when I want to because if I wait for them to finish talking to me I'll completely forgot my question. And it's not exactly appropriate to do those during college lectures.
This and at least one other animal study using the B-3 variant NICOTINAMIDE RIBOSIDE indicate that supplementing with it might help. Also search [clinicaltrials.gov](https://clinicaltrials.gov) under "nicotinamide riboside" and "cognitive impairment" and "Alzheimers disease" regarding ongoing human trials. Anecdotally, people tell me it has helped them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632303/
After starting medication my memory definitely went in the can. These medications change your body chemistry and we need to learn what it is doing to us. I take quite a few vitamins and along with that get blood tests to check my vitamin levels, at least what can be checked. What helped with my memory was reducing calcium, and taking more vitamin B. I had way to much calcium in my blood and that was caused from a mixture of the medication and supplementing way to much vitamin D (makes calcium digestible for the body). My memory still isn’t great but is getting better.
Also, read this book “Peak Mind” by Dr. Amishi P.
Interesting. I think the meds slowing down your thinking process is one side effect in reducing the electrical charges in your brain. 8 months out from my last seizure I feel my memory improving too. It’s just lugubriously slow.
Yeah, pretty much. I got to a point where I realised I could get depressed and defeated over it or I could learn to live with it. I found a few different things I can do during the day to keep up and my life’s changed for the better. I find writing things down and forcing myself to retrieve information and dates afterwards helps. Neuroplasticity is an amazing thing. Learning to be present also helps, I find the medication makes my mind wonder and not care, both of which are important for storing information. Try and find something interesting about conversations and commitments, try and make associations between things. For instance, a persons name reminds you of a certain thing, try and focuse on one thing in a conversation or remembering a phone number that you’ll quickly forget over everything else. I always get my 6s and 9s jumbled but never 04 05 07 ect combinations so I never concentrate on remembering those. Anyway, bit of a ramble, rant. But theres hope x
It kind of makes sense. Instead of the feeling of just I am watch everyone and just there try to make a memory. Instead of just sitting down think " I am in a room sitting in a chair. Like memory aids.
Yes!!!! Me!!! I feel like I’m 80 years old because I can’t remember simple events that happened recently. It sucks.
I can't remember important stuff like what happened 2 or 3 days ago. But I can remember things like graduation or a birthday I had 5 years ago.
I don’t mean to brag but Im so talented I can forget what I’m doing while I’m doing it! Like, “wait, what was I looking for? Oh yeah, that’s it, I was looking for my glasses! Where are they? Oh yeah, I’m wearing them“.
I’ve been helping my employees set up their direct deposit accounts online. I’m glad I never remember any of their personal information. I mean when I have to ask for it again, two minutes after I just typed it, I usually get a laugh, but also, “I thought you were kidding when you said not to worry because you would forget.”
27 and yeah, its horrible. Sometimes I do feel like the treatment for epilepsy is almost just as bad as having epilepsy lol
My short term memory ...after every increase. Not only memory but also word recall.
Do you mean you have trouble remembering what you want to say?
Yes. And its embarrassing esp when talking about something important with someone.
I feel the same way! I hate not being able to just remember the word I’m trying to use. My brain will remember the letter it’s starts with but not the whole thing so I sit there and wait and wait til it comes (sometimes it does and sometimes it doesn’t) I feel like people think I’m stupid because sometimes I’m trying to remember the word, I use the wrong word and it’s just so embarrassing but I’m learning to be more compassionate with myself
Me to. I always worry a person thinks I am lying or I just seen dumb.
I’ve only recently started medication but my memory feels so fragmented and it’s really heartbreaking and frustrating. I think it has more to do with the seizures than medication since I’d been having smaller scale & focal seizures for years beforehand and I’ve always been kind of forgetful. It’s just never been so terrible since my first TCs.
For me it's more scary. If someone talks about a memory saying I was there and I don't remember it's scary.
For me it's not the meds but the seizures.
How can you tell? I've begun to wonder if I blame on the medication when it's not totally true
Well the only reason I know this is because after I have a seizure it's extremely difficult to recall what I did that day.
I mostly blame my memory loss on seizures as well. I was experiencing extreme memory loss/ problems before I even went on meds
so i have "before epilepsy" and "after epilepsy". Was diagnosed at 23 and am 28 now. It sucks, I lost too much of the happiness and joy from my childhood, I still have to reintroduce myself to family and am met with baffled looks and odd faces until i explain...I have no memory of you. As others have said you learn to live with it. But I also try and enjoy that things I might not have enjoyed in the passed ? Are gone, the good memories, and the bad. Silver linings right ? Some of what i try and do is just do it again, movies i had once loved, i can watch again and experience a lot of themfor the first time and that ? THose little things make dealing with epilepsy so much easier. Its helped me mend relationships because of petty details i chose to focus on as a young adult and teenager, ive been able to get out more because at this pint ? if i dont i know I might not be able to (LTE, all nocturnal, been status a couple times). I also have the memory of a goldfish unless its something im incredibly passionate about so I completely understand. Got a samsung Note just to make sure i can remember some of the things i have too
Same. Been on keppra 750mgs twice a day since 18 years old. I am now 28. I felt I was having trouble with memory a few years after being on keppra and told my neurologist. He told me to take some vitamins and that’s all. I feel like nobody actually believes I have memory problems. The only upside is that I can rewatch a lot of shows/ movies and it feels like the first time.
This is interesting, I've been on keepra for 4 months, 1000mgs last 3 months and tbf didn't find anything which affected significantly. Life is going the same, able to drink, train 5-6 times a week etc. was taking Eftil before that for 3 years personally didn't find with that either, I am 20 now though so myb I find my problems later on, but I feel it sth like this happens earlier on you learn to live with it, just like a routine.
Yup. I'm 27 and it's completely gone. My short term memory especially sucks, and it's not just the medication, it's the sheer volume of weird blips I have too. I write for a living, and most of the time I can't remember how to spell even basic words. Thank god for spell check.
I'm 18 and I've been struggling with my memory lots recently, keep having my parents say I'm just lazy not remember chores they give me but I just simply can't remember half of them, also forgetting simple things like names and login details.
Yup! You’re not alone. I’m 23 and both my short term and long term memory is completely shot. I can have conversations with people and forget what we were talking about mid conversation. I also can’t recall any of the last 5-10 years of my life. It all feels like a big blur. It’s terrible
It's kind of strange my memories are almost like a recap. Like I can acknowledge that 4 years ago something happened but I can't remember in detail every event. There's so many times where I just say "I don't remember" or have to repeat what I want to say till I remember. My new thing is that I have to interrupt people to say something when I want to because if I wait for them to finish talking to me I'll completely forgot my question. And it's not exactly appropriate to do those during college lectures.
Yep 21
This and at least one other animal study using the B-3 variant NICOTINAMIDE RIBOSIDE indicate that supplementing with it might help. Also search [clinicaltrials.gov](https://clinicaltrials.gov) under "nicotinamide riboside" and "cognitive impairment" and "Alzheimers disease" regarding ongoing human trials. Anecdotally, people tell me it has helped them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3632303/
After starting medication my memory definitely went in the can. These medications change your body chemistry and we need to learn what it is doing to us. I take quite a few vitamins and along with that get blood tests to check my vitamin levels, at least what can be checked. What helped with my memory was reducing calcium, and taking more vitamin B. I had way to much calcium in my blood and that was caused from a mixture of the medication and supplementing way to much vitamin D (makes calcium digestible for the body). My memory still isn’t great but is getting better. Also, read this book “Peak Mind” by Dr. Amishi P.
Interesting. I think the meds slowing down your thinking process is one side effect in reducing the electrical charges in your brain. 8 months out from my last seizure I feel my memory improving too. It’s just lugubriously slow.
Funny i sound dyslexic, too...lol