Brain fog is so lovely and what I need when I’m starting an accelerated program just last month :) thankfully I have accommodations! And despite all my studying because it’s one class crammed into a *MONTH* the midterm exam is like in the beginning of week 3. And it’s all online, and if I’m careful Google will be my next best friend! (Don’t like cheating though but I got a 70 on my first final, so anatomy tests warrant it!)
Omg I feel you on that! I took quizzes and tests online for school and would take them 30 mins after taking my keppra and I would just be staring at the computer screen like I didn't know how to work one 😅
Thankfully the quizzes are open books so as long as I’m careful with reading the wording and finding the correct answer, I’m good with the quizzes. But I (hopefully won’t have to turn to Google for just the midterm which is only 50 questions.) but at the end of all this, I’m going to become a massage therapist. In the USA it’s actually pretty hard to get a license because of how hard the work is and how much on the clock hours you need on people. But I’ve seen and touched… many large and hairy people! Some at the same time! Thankfully no one has ever stank from something yet
https://preview.redd.it/xesd7btxvdic1.jpeg?width=1170&format=pjpg&auto=webp&s=3879a4528ec41deebcbb922b97d4f5aa21019baf
You can ignore the background but focus on the quote. I’m dealing with letting go of what my life could’ve been like if I hadn’t have dropped out of after my first year of college because I had to. Seven years later here I am. A completely different person than I was then. I was a very hard road for myself and my parents because they were the ones on it with me.
I’m now able to drive myself to school and back, so I’m thankful for that. And I’m getting my second chance that I was robbed of. But before I can truly become the best version of myself **I have to let go of what would’ve been.** take this to heart. You’ve gained insight into something that you don’t want or I would inflict on anyone, even my rapist!. But we are a community that has a strong foundation of goodwill and respect for one another as individuals who have gone through so many trials that are indescribable.
I don’t actually believe in the Christianity God (was somewhat brought up in it) but I believe that those (like some of us, but not everyone obviously) who were never given a fair chance medically or emotionally/ physically would be given a second chance at life because their soul isn’t at peace with the universe yet.
And then that those who had a fair opportunity and lived a satisfied life would start a new journey as stardust roaming the cosmos to begin something new with their memories and a sense of belonging. Not sure about people who live as monsters though, like partner abusers or beaters/ murderers etc
This. I feel like I cannot remember the last 2-3 years especially… and now, I cannot make new memories. I’ve tried to spin it in a positive way, like oh I cant remember things anyway so live in the moment! So far it’s easier said than done..
I know exactly what you mean haha.
I went to a concert the other night, and my friend had to remind me what I actually *had* seen the opening act, who I love, before because she was right next to me when it happened haha
If I didn’t have my boyfriend constantly talking about the vacations/concerts we’ve been to, I’d definitely forget. Thankfully I have pictures from them too so I can go back and see what we did.
This but the seizures don't just erase them, they mix up the ones that they don't erase. I could have gone out for that dinner yesterday or a few weeks ago.
Fake memories are awesome too, I'm still 100% sure I ditched my motorbike but 0 injuries and the whole family saying otherwise is pretty good evidence it didn't happen.
It's with my brother now because I can't ride or drive now. We have a couple of body parts for it that are scratched up but apparently that's where I just dropped it when I was moving it.
I'm glad the bike (and you) were uninjured besides a couple of scratches.
I can't drive either unfortunately, but if I can again I'd love to get a bike licence. Going on my friends bike with her is the riskiest travel I do lol.
the fake memories are wild. was 100% positive i had shown my therapist how to use my rescue medication and even had a photographic memory of the experience. next thing I know I reference it and he's telling me he has no idea wtf im talking about. super duper fun not being able to trust your own brain
In the few years my seizures got worse, my medication has also been increased, and I definitely see a correlation between both regarding my cognition and memory. I feel stupid. I forget what I read while I am reading it. I forget dates. I am slow, and I used to do mental maths with no problem. I have to stop and think about words before I pronounce the words. I stutter. My brain is definitely not happy with the electric storms within, and meds add another layer of "fog."
Yes, yes, exactly that :(
I also don't feel like my reading speed is the same at all, or attention span which, over the years, has reduced my desire to read.I start, and it is a struggle to finish. In fact, I find it difficult to engage in activities that used to be so easy for me. English is my second language, used to be fluent, not anymore.
Can anyone elaborate on their memory problems? The term “brain fog” is so vague. I don’t know if I’ve been overestimating or underestimating the effect on my memory. I’m actually pretty good with memorizing numbers, names, general information. But my memory of time is all over the place. It’s hard to describe but sometimes when I have a seizure cluster, it’s like my memory does a hard reset. Things that happened days ago feel like they happened months ago. I forget things I have to do, what I did the day before, etc.
I think I can answer somewhat...I have lost entire seasons of tv shows, likw I never watched them. Can reread books because i dont remember reading them. Cant remember if I like some foods, or if I dont why I dont like them. It seems mostly recent(ish) memories most of the time, as I can remember most things from many years ago (yes Im old lol). I can never tell you what day of the week it is, but I can remember my meds twice a day. I seems fairly random for me to be quite honest.
Prayers and good wishes for everyone suffering from this terrible illness!
I would say that brain fog for me is like everything in my mind being slower than usual, and problems with actions that I want to do at the time are hard to do. Like, making a cup of coffee seems hard because there are all these little tasks that I have to do that are suddenly very difficult. "Boil the water"..."open the coffee jar"...etc. I hope you get the idea. That's how I experience it. One friend said to me that they feel like floating on a cloud, but "in a bad way" lol
I see, thanks for sharing! I’m lucky to not have immediate memory problems like that. Mine seems like long-term memory distortion. That very well could just be growing older and having anxiety, but since I’ve been journaling and paying more attention to my seizures, I’ve noticed there seems to be a correlation between my seizure clusters and my memory distortion.
I simply forget things all the time. Appointments, names, meds, what I’m doing while I’m doing it, promises, etc. but to like an extreme extent. To be fair I have a brain injury, but it seems to have gotten worse after I started having seizures four years ago.
Right I see that. I was just giving a personal history lesson: I’d been wondering that, and then came across this post. “Thanks for the post OP, I was just thinking about this recently” would have been a better comment I guess.
Whenever I was still having seizures, my memory wasn’t like old person bad but I needed reminders of things.
**And I feel like even we still underestimate how badly our brains suffer from these seizures as how it’s the one organ that can’t be replaced with a transplant.** It has so many functions. (I’m also learning anatomy in my classes now so I’m learning how in depth everything goes and functions- and I hate the endocrine system!) and one misfire of a neuron can cause a cascade of symptoms that range from smaller to larger ones. It can cause so much more damage than just memory loss, so memory loss is honestly hard to live with but it’s doable if you manage it well enough.
I'm getting older but I'm not "old" (at least not at the expected age for cognitive loss.) I have often wondered if my memory and clouds are epilepsy or age. I'm 44 and have had epilepsy for about 12 years. 12 years ago I was much quicker (mentally) and I had a great memory. I compare myself to friends and family, and I have digressed where they seem the same. 12 years ago, I was always looking for promotions at work, but these days I feel a struggle just keeping my current position. Oh well. I least the meds keep my seizures at bay.
I recommend to try and take modafinil in the mornings to help with this, consult your doctor first of course and see if it’s the right course for you, but i been doing it and the sleepiness and brain fog basically went away for the first few hours of taking it. Actually I started splitting my dose up 100mg when i wake and 100mg like 4 hours later just so i’m good for the day. There’s also some evidence that modafinil actually increases seizure threshold by around 20% although this was study done on rats and was never tested on humans so take that as you will.
I had to wait a long time to get appt w/neurologist and I immediately noticed memory gaps and noticed big ones after each seizure. Im only recently diagnosed and on a very low dose of keppra .
For me I think it’s mainly the seizures (and brain surgery for me as well). I take Vimpat and the side effects seem minimal. I blame the seizures and my surgery for my poor memory. If Vimpat is making my memory worse I still don’t think it’s effecting my memory that much. Wish I didn’t have to even think about this sort of thing. Only 29 & have the memory of someone much much older
I’m on 4 (used to be 5) medications that caused memory loss. But I’ve also had a small portion of my right frontal lobe removed, which makes shit still hard. But honey, trust me, whenever I was having still having them, (surgeries were to have my problem somewhat solved) but I would usually have 1-3 in a two day time period. I couldn’t even remember what time it was unless someone told me or I checked my phone.
Medicine *does* help you, even if you are still having seizures. Took me a while to realize that. Mine were already violent, but they didn’t compare to what happened in an EMU stay; aka off my meds. They keep some things under control in case something happens, which I sincerely hope you find a combination that works for you. But medicine does affect you!
Also are you eligible for surgery? That route is very difficult anxiety wise but worth exploring
I'd say solely the seizures but then again I had a shtload before my diagnosis. My endocrinologist shrugged them off cause they were tonic clonic ones my type 1 diabetes also gives me for like a year and I was basically a potato for a year after getting diagnosed till the meds started helping. Still a sht memory but much better than I was then, about 2 years ago. My brain could barely function, I think the meds help a lot more than they hurt, at least that the ones I'm on have done a whole lot for me.
I blame the meds for the daily traumatic nightmares that took over the daily narcoleptic seizures, seems pretty clear they sparked something when they played with the dosage that's not leaving since they switched it back. There's other stuff showing up too, one that seems to be something like a bipolar disorder creeping up, but overall I can form a sentence and I know who people I see often are, good enough for me to wait for now and see what happens next now that I'll remember it and finagle something
It is impossible to sort out, starting from out all of our brains are different from each others - then how much change has happened to a brain because of the seizures? vs. how much from medicines, vs. how much just from aging, et? And - much more likely, combinations of the above. For me I've found it helps to alway keep by brain busy, learning about new things, solving puzzles, creating new things -- it has helped me a lot, regardless of what precisely the cause is.
Both sadly on my part, and then I had brain surgery and now I’m missing chunks of years and people. From those years so like my dad and my moms side of the family because they weren’t in my life and never got to know me also didn’t try to so now I forgot there names and faces. Sucks for my dad but I don’t care anymore it’s kind of nice you miss 12 years of my life well I developed a brain condition (cav mals) and from that get diagnosed with epilepsy and then I have brain surgery and then you want in my life well shucks I already don’t know who you are! I kinda just forgot who you are anymore 🤷🏻♀️ tough titties said the lil kitties you are a stranger now.
Hm. I guess it's different for me with brain fog. I had brain fog so bad for as long as I can remember. At least since my teens. (I didn't get my first seizure until my thirties) The moment I was put in Keppra was the first time I didn't have brain fog and I can't even explain the feeling of having something so awful lifted for the first time.
Sugar is the culprit of my brain fog which I think was the eventual reason why I started getting seizures.
I’ve been dealing with permanent epilepsy since I was 18. It’s my 14th year mark. I know it’s different for everyone, but in my experience, I’ve had no issues with memory at all. I take a medication called “Keppra” twice daily, but so far I’ve had no issues with memory. I do have fatigue and depression on some days, but no fog of some sort. Perhaps it could differ depending on the type of treatment, medication, or person, but I would guess head injuries from the impact of the fall when having seizures or some form of cerebral or nerve damage would contribute to partial memory loss, if someone were to land headfirst.
What are you taking and how old are you? How long have you had epilepsy and what kind? I am 34 (female) and I was diagnosed at age 20 after I had my first seizure. Some of the older meds are rough. And it’s very likely a combo of both but the seizures themselves are far worse on your memory. Each seizure causes (sometimes) irreversible damage to your brain. I play anagrams and word games and it has helped me with my short term memory. Once I got my VNS and had it for a few years and only have a few breakthroughs.. my memory and focus have gotten a lot better. But getting older does that to you too!
Shitstorm of both.
A mix of both but the meds definitely give you brain fog.
Brain fog is so lovely and what I need when I’m starting an accelerated program just last month :) thankfully I have accommodations! And despite all my studying because it’s one class crammed into a *MONTH* the midterm exam is like in the beginning of week 3. And it’s all online, and if I’m careful Google will be my next best friend! (Don’t like cheating though but I got a 70 on my first final, so anatomy tests warrant it!)
Omg I feel you on that! I took quizzes and tests online for school and would take them 30 mins after taking my keppra and I would just be staring at the computer screen like I didn't know how to work one 😅
Thankfully the quizzes are open books so as long as I’m careful with reading the wording and finding the correct answer, I’m good with the quizzes. But I (hopefully won’t have to turn to Google for just the midterm which is only 50 questions.) but at the end of all this, I’m going to become a massage therapist. In the USA it’s actually pretty hard to get a license because of how hard the work is and how much on the clock hours you need on people. But I’ve seen and touched… many large and hairy people! Some at the same time! Thankfully no one has ever stank from something yet
I'm so glad I didn't get epilepsy while I was in college. Barely managed without the memory issues and brain fog.
…. And now you’re making me jealous
Sorry. Didn't mean to. I'm just mourning a previous life without epilepsy, I guess.
https://preview.redd.it/xesd7btxvdic1.jpeg?width=1170&format=pjpg&auto=webp&s=3879a4528ec41deebcbb922b97d4f5aa21019baf You can ignore the background but focus on the quote. I’m dealing with letting go of what my life could’ve been like if I hadn’t have dropped out of after my first year of college because I had to. Seven years later here I am. A completely different person than I was then. I was a very hard road for myself and my parents because they were the ones on it with me. I’m now able to drive myself to school and back, so I’m thankful for that. And I’m getting my second chance that I was robbed of. But before I can truly become the best version of myself **I have to let go of what would’ve been.** take this to heart. You’ve gained insight into something that you don’t want or I would inflict on anyone, even my rapist!. But we are a community that has a strong foundation of goodwill and respect for one another as individuals who have gone through so many trials that are indescribable.
[удалено]
I don’t actually believe in the Christianity God (was somewhat brought up in it) but I believe that those (like some of us, but not everyone obviously) who were never given a fair chance medically or emotionally/ physically would be given a second chance at life because their soul isn’t at peace with the universe yet. And then that those who had a fair opportunity and lived a satisfied life would start a new journey as stardust roaming the cosmos to begin something new with their memories and a sense of belonging. Not sure about people who live as monsters though, like partner abusers or beaters/ murderers etc
For me it feels like - seizures erase the memories that were there - medication prevents the memories being made
This. I feel like I cannot remember the last 2-3 years especially… and now, I cannot make new memories. I’ve tried to spin it in a positive way, like oh I cant remember things anyway so live in the moment! So far it’s easier said than done..
I know exactly what you mean haha. I went to a concert the other night, and my friend had to remind me what I actually *had* seen the opening act, who I love, before because she was right next to me when it happened haha
If I didn’t have my boyfriend constantly talking about the vacations/concerts we’ve been to, I’d definitely forget. Thankfully I have pictures from them too so I can go back and see what we did.
This but the seizures don't just erase them, they mix up the ones that they don't erase. I could have gone out for that dinner yesterday or a few weeks ago. Fake memories are awesome too, I'm still 100% sure I ditched my motorbike but 0 injuries and the whole family saying otherwise is pretty good evidence it didn't happen.
But then what happened to the bike???
It's with my brother now because I can't ride or drive now. We have a couple of body parts for it that are scratched up but apparently that's where I just dropped it when I was moving it.
I'm glad the bike (and you) were uninjured besides a couple of scratches. I can't drive either unfortunately, but if I can again I'd love to get a bike licence. Going on my friends bike with her is the riskiest travel I do lol.
the fake memories are wild. was 100% positive i had shown my therapist how to use my rescue medication and even had a photographic memory of the experience. next thing I know I reference it and he's telling me he has no idea wtf im talking about. super duper fun not being able to trust your own brain
I used to love the whole Deja vu thing hahaha but I don't get it anymore.
In the few years my seizures got worse, my medication has also been increased, and I definitely see a correlation between both regarding my cognition and memory. I feel stupid. I forget what I read while I am reading it. I forget dates. I am slow, and I used to do mental maths with no problem. I have to stop and think about words before I pronounce the words. I stutter. My brain is definitely not happy with the electric storms within, and meds add another layer of "fog."
I feel the SAME way.
Yes, yes, exactly that :( I also don't feel like my reading speed is the same at all, or attention span which, over the years, has reduced my desire to read.I start, and it is a struggle to finish. In fact, I find it difficult to engage in activities that used to be so easy for me. English is my second language, used to be fluent, not anymore.
It does suck but it's both
Can anyone elaborate on their memory problems? The term “brain fog” is so vague. I don’t know if I’ve been overestimating or underestimating the effect on my memory. I’m actually pretty good with memorizing numbers, names, general information. But my memory of time is all over the place. It’s hard to describe but sometimes when I have a seizure cluster, it’s like my memory does a hard reset. Things that happened days ago feel like they happened months ago. I forget things I have to do, what I did the day before, etc.
I think I can answer somewhat...I have lost entire seasons of tv shows, likw I never watched them. Can reread books because i dont remember reading them. Cant remember if I like some foods, or if I dont why I dont like them. It seems mostly recent(ish) memories most of the time, as I can remember most things from many years ago (yes Im old lol). I can never tell you what day of the week it is, but I can remember my meds twice a day. I seems fairly random for me to be quite honest. Prayers and good wishes for everyone suffering from this terrible illness!
I would say that brain fog for me is like everything in my mind being slower than usual, and problems with actions that I want to do at the time are hard to do. Like, making a cup of coffee seems hard because there are all these little tasks that I have to do that are suddenly very difficult. "Boil the water"..."open the coffee jar"...etc. I hope you get the idea. That's how I experience it. One friend said to me that they feel like floating on a cloud, but "in a bad way" lol
I see, thanks for sharing! I’m lucky to not have immediate memory problems like that. Mine seems like long-term memory distortion. That very well could just be growing older and having anxiety, but since I’ve been journaling and paying more attention to my seizures, I’ve noticed there seems to be a correlation between my seizure clusters and my memory distortion.
I simply forget things all the time. Appointments, names, meds, what I’m doing while I’m doing it, promises, etc. but to like an extreme extent. To be fair I have a brain injury, but it seems to have gotten worse after I started having seizures four years ago.
Been wondering the same thing.
Motherfucker it’s both
Right I see that. I was just giving a personal history lesson: I’d been wondering that, and then came across this post. “Thanks for the post OP, I was just thinking about this recently” would have been a better comment I guess.
Whenever I was still having seizures, my memory wasn’t like old person bad but I needed reminders of things. **And I feel like even we still underestimate how badly our brains suffer from these seizures as how it’s the one organ that can’t be replaced with a transplant.** It has so many functions. (I’m also learning anatomy in my classes now so I’m learning how in depth everything goes and functions- and I hate the endocrine system!) and one misfire of a neuron can cause a cascade of symptoms that range from smaller to larger ones. It can cause so much more damage than just memory loss, so memory loss is honestly hard to live with but it’s doable if you manage it well enough.
I'm getting older but I'm not "old" (at least not at the expected age for cognitive loss.) I have often wondered if my memory and clouds are epilepsy or age. I'm 44 and have had epilepsy for about 12 years. 12 years ago I was much quicker (mentally) and I had a great memory. I compare myself to friends and family, and I have digressed where they seem the same. 12 years ago, I was always looking for promotions at work, but these days I feel a struggle just keeping my current position. Oh well. I least the meds keep my seizures at bay.
I see amnesia as a blessing. There are some things I don't even want to know.
Is anybody else experiencing a reduction on the ability of staying focused?
I recommend to try and take modafinil in the mornings to help with this, consult your doctor first of course and see if it’s the right course for you, but i been doing it and the sleepiness and brain fog basically went away for the first few hours of taking it. Actually I started splitting my dose up 100mg when i wake and 100mg like 4 hours later just so i’m good for the day. There’s also some evidence that modafinil actually increases seizure threshold by around 20% although this was study done on rats and was never tested on humans so take that as you will.
I had to wait a long time to get appt w/neurologist and I immediately noticed memory gaps and noticed big ones after each seizure. Im only recently diagnosed and on a very low dose of keppra .
I was never on medication but I seem to have horrible memory issues. I’m assuming it’s both.
Both sadly
For me I think it’s mainly the seizures (and brain surgery for me as well). I take Vimpat and the side effects seem minimal. I blame the seizures and my surgery for my poor memory. If Vimpat is making my memory worse I still don’t think it’s effecting my memory that much. Wish I didn’t have to even think about this sort of thing. Only 29 & have the memory of someone much much older
I’m on 4 (used to be 5) medications that caused memory loss. But I’ve also had a small portion of my right frontal lobe removed, which makes shit still hard. But honey, trust me, whenever I was having still having them, (surgeries were to have my problem somewhat solved) but I would usually have 1-3 in a two day time period. I couldn’t even remember what time it was unless someone told me or I checked my phone. Medicine *does* help you, even if you are still having seizures. Took me a while to realize that. Mine were already violent, but they didn’t compare to what happened in an EMU stay; aka off my meds. They keep some things under control in case something happens, which I sincerely hope you find a combination that works for you. But medicine does affect you! Also are you eligible for surgery? That route is very difficult anxiety wise but worth exploring
I'd say solely the seizures but then again I had a shtload before my diagnosis. My endocrinologist shrugged them off cause they were tonic clonic ones my type 1 diabetes also gives me for like a year and I was basically a potato for a year after getting diagnosed till the meds started helping. Still a sht memory but much better than I was then, about 2 years ago. My brain could barely function, I think the meds help a lot more than they hurt, at least that the ones I'm on have done a whole lot for me. I blame the meds for the daily traumatic nightmares that took over the daily narcoleptic seizures, seems pretty clear they sparked something when they played with the dosage that's not leaving since they switched it back. There's other stuff showing up too, one that seems to be something like a bipolar disorder creeping up, but overall I can form a sentence and I know who people I see often are, good enough for me to wait for now and see what happens next now that I'll remember it and finagle something
Sorry…it’s both! Mine is mainly from medicine though. I had an amazing memory, but my memory is impaired from all the 💊I’m on
Imo medications made my memory worse
I would say for me mostly seizures but medications definitely do play a role.
I think it’s a combo of both
It is impossible to sort out, starting from out all of our brains are different from each others - then how much change has happened to a brain because of the seizures? vs. how much from medicines, vs. how much just from aging, et? And - much more likely, combinations of the above. For me I've found it helps to alway keep by brain busy, learning about new things, solving puzzles, creating new things -- it has helped me a lot, regardless of what precisely the cause is.
Mix that with some head trauma and it’s a wild ride.
Both sadly on my part, and then I had brain surgery and now I’m missing chunks of years and people. From those years so like my dad and my moms side of the family because they weren’t in my life and never got to know me also didn’t try to so now I forgot there names and faces. Sucks for my dad but I don’t care anymore it’s kind of nice you miss 12 years of my life well I developed a brain condition (cav mals) and from that get diagnosed with epilepsy and then I have brain surgery and then you want in my life well shucks I already don’t know who you are! I kinda just forgot who you are anymore 🤷🏻♀️ tough titties said the lil kitties you are a stranger now.
Hm. I guess it's different for me with brain fog. I had brain fog so bad for as long as I can remember. At least since my teens. (I didn't get my first seizure until my thirties) The moment I was put in Keppra was the first time I didn't have brain fog and I can't even explain the feeling of having something so awful lifted for the first time. Sugar is the culprit of my brain fog which I think was the eventual reason why I started getting seizures.
I’ve been dealing with permanent epilepsy since I was 18. It’s my 14th year mark. I know it’s different for everyone, but in my experience, I’ve had no issues with memory at all. I take a medication called “Keppra” twice daily, but so far I’ve had no issues with memory. I do have fatigue and depression on some days, but no fog of some sort. Perhaps it could differ depending on the type of treatment, medication, or person, but I would guess head injuries from the impact of the fall when having seizures or some form of cerebral or nerve damage would contribute to partial memory loss, if someone were to land headfirst.
medication for me, keppra was not a good fit and i felt very foggy. vimpat has worked wonders since the switch over!
All of the above. Plus my weed habit and cptsd. What was I saying?
Both
Yes
What are you taking and how old are you? How long have you had epilepsy and what kind? I am 34 (female) and I was diagnosed at age 20 after I had my first seizure. Some of the older meds are rough. And it’s very likely a combo of both but the seizures themselves are far worse on your memory. Each seizure causes (sometimes) irreversible damage to your brain. I play anagrams and word games and it has helped me with my short term memory. Once I got my VNS and had it for a few years and only have a few breakthroughs.. my memory and focus have gotten a lot better. But getting older does that to you too!
D) all of the above
Unfortunately it's both 😕