Epilepsy and memory…

Epilepsy and memory… | November 5, 2022

To say that lack of memory is a major worry for those of us with epilepsy is hardly a surprise.

In fact, it’s the number one concern.

Simply put, memory is our brain’s ability to store information and find it again later.

Chemical and electrical changes happen in your brain when new memories are made.

It’s a natural brain process that requires continuing attention and recording by parts of your brain.

Seizures interfere with your memory by interfering with attention or input of information.

Confusion often follows a seizure, and during this foggy time, new memory traces aren’t being laid down in the brain.

Tonic-clonic (grand mal) seizures in which you lose consciousness can interfere with normal brain processes and disrupt the registration phase of short-term memory.

Sometimes longer term memories from the period prior to the seizure are lost as well, since these memories may have not yet being fully integrated into your brain’s memory system.

There are many different ways to classify how memory works.

Some people rely more on their verbal memory, remembering in terms of words or sounds, while others use their visual memory, relying on pictures or spatial relationships.

This can be for lots of reasons, including the type of seizures you have, the effects of medication, the effect of concentration or mood, lack of sleep, age, or the effect of epilepsy surgery.

Common everyday memory problems include:

Being unable to come up with a word that we feel is “on the tip of our tongue”, apparently because of a verbal memory processing problem.
Having to go back to check to see if something was done, such as turning off the stove, probably reflecting a failure to pay adequate attention at the time.
Forgetting where we put something, probably a visual-spatial memory process problem.
A verbal malfunction, where you know the words or names, but just can’t come up with them.
Not remembering what has been said or been told is another.

The types of problems people have vary, and how serious a nuisance the problems are varies from person to person as well.

Any type of epileptic seizure could potentially affect your memory, either during or after a seizure.

If you have lots of seizures, memory problems might happen more often.

Some people have generalized seizures that affect all of the brain.

Others have focal seizures (sometimes called partial seizures) that affect only part of the brain.

Some people have both generalized and focal seizures.

If you have focal seizures, the way your seizures can affect your memory will depend on where in the brain your seizures happen.

The brain has two halves called hemispheres.

Each half has four parts called lobes: the occipital, parietal, temporal and frontal lobes.

Abnormalities in the temporal or frontal lobes of the brain are the most common reason for memory problems.

The left temporal lobe is important for verbal memories such as learning names and remembering facts for exams.

If you have seizures that start in this area, you may have problems remembering words, and get stuck mid-sentence.

The right temporal lobe is important for visual memories like remembering a person’s face or finding your way around a place.

The frontal lobe is important for prospective memory. Seizures in this area can cause problems remembering to do things in the future.

You may have difficulty remembering information straight after a seizure.

This is sometimes called post-ictal (after-seizure) confusion and it usually goes away once you have recovered.

If you have temporal lobe epilepsy you may have memory difficulties even if your seizures are well controlled.

That’s because the temporal lobe is responsible for creating memories.

Memory problems can sometimes happen due to the side-effects of anti-epileptic drugs (AEDs).

Drowsiness or attention problems can affect your short-term memory, and may make it more difficult to learn and store new information.

You may be more likely to have memory problems if you take high doses or more than one type of AED.

Memory problems rarely disappear completely following drug changes.

But taking AEDs may help to improve your memory by making seizures less frequent or by stopping them completely.

Mood and concentration can affect your memory.

Often the way you feel can affect how well you are able to remember information.

Feeling confident or happy can affect the way the brain works by increasing your ability to concentrate and take in information.

If you feel anxious or stressed, it’s more likely that your brain will have difficulties at the “learning” stage.

Also, when you have trouble recalling information, worrying might make it harder to find the correct information.

For some people, lack of sleep can make them more likely to have seizure.

For others, it may be that seizures during the night cause them to be tired.

Research suggests that getting good quality sleep can help make your memory more stable and preserve long-term memory.

In addition, age itself can affect storing and recalling information.

This might be because of the way the brain changes physically, and also because the demands on our memory can change.

Managing different areas of your life such as work, family, study and social life, can be complicated and may increase the chance of you forgetting things.

Then there’s surgery…

Memory problems are frequently reported following surgery for epilepsy.

This is most common with surgery to the temporal lobe.

Memory assessments are carried out before and after surgery.

But even if the surgery stops your seizures from happening, you may have memory problems afterwards.

Assessments are usually done by neuropsychologists who can advise on ways to manage memory difficulties.

Here’s the official lingo:

Long-term memory is information stored over a long time.

Semantic memory is knowledge and facts about people, places and things.

Episodic memory is memory about a specific events or episodes in our lives.

Prospective memory is memory for doing things in the future.

Procedural memory is memory for skills and how to do things.

Short-term memory, which is also called “working memory” or “attention span”, is information that is only kept for the length of time you need to use it.

Getting the information into our memory is called the encoding and then the consolidation process, and the separate process of getting it out again is called “retrieval”.

Some people have a problem getting information into their memory in the first place, while others find the retrieval challenging, and may just need a cue or prompt before they are able to retrieve a memory.

Interestingly, epilepsy-linked memory loss worries more patients than doctors! (Now how would they feel if they were on the other side of the table?)

Patients and doctors agreed overall on three of the top five concerns:

Having a seizure unexpectedly…
The legal right or ability to drive…
Seizures not being controlled.

Doctors ranked problems with medication side-effects as their second-highest concern.

And both groups agreed that having a seizure unexpectedly was the number one concern.

“In a lot of cases, there was a fair amount of overlap, but the thing that the patients had on their radar screen that practitioners didn’t was the memory issue.

Memory was a concern for a larger percentage of the patients than we had anticipated,” said James McAuley, associate professor of pharmacy practice and neurology at Ohio State University and lead author of a study reported in the journal Epilepsy & Behavior.

“Indirectly, we address memory concerns in the clinic by addressing seizures. But we don’t typically sit down with a patient and say: Tell me about your memory.

This has heightened the awareness of our clinicians and should serve as a wake-up call to all practitioners treating people with epilepsy.

The mantra in our clinic is: No seizures, no side-effects, so uncontrolled seizures are seen as a medical concern by practitioners,” McAuley said.

“Patients tend to not want to have seizures because of the social stigma.

An interesting point in this context is that we believe in the clinic that if we can improve seizures, we will improve memory.”

Scientists plan to delve more deeply into this area of research by exploring what causes are behind memory problems that are reported.

“We’ll try to differentiate the cause of the memory problem and that will help guide us to either increase medication doses to get better control of seizures, decrease doses to eliminate side-effects, or use an antidepressant to address mood,” said McAuley.

“It’s quite a murky area and our goal is to learn more by dissecting the reasons for memory loss.”

I don’t think he’ll forget!

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25 Comments »

I am greatly hurt by these news on our 4 parts of the brain because I have ro rely only on myself like so many and to remind myself is the last thing on my mind due to being a single mother for over 10 years plus not able to think for myself was hard. No one has ever cared doctors have been at times very good informants and at times bad.
Looking forward to the future I rather die than to be a vegetable and not have any memory, I can do that myself because I have had enough of this life and lots of time to think about it!

LikeLiked by 2 people

Comment by Mirna — November 5, 2022 @ 9:35 AM

Reply
- Mirna, While I understand your feelings for I had been in your shoes few times before, I’ve come to learn that I can take advantage of technology to remind me of every significant day of my life & special events I needed to take care of for my wellbeing.
  While I believe Epilepsy medication side effects & grand mal seizures had literally destroyed my memory into frustrating search for recollection, setting up my IPhone calendar to alert & refresh my memory has significantly reduced my frustration.
  I hope you consider trying my experience & see how technology can improve your condition.
  Best wishes!
  Gerrie
  
  LikeLiked by 1 person
  
  Comment by Gerrie — November 5, 2022 @ 9:13 PM
  
  Reply
  - Thank you to all the responses. It means a lot to my well being.
    I do want so much more of course; I want my manager to stop telling me that I have memory issues because of my epilepsy, I have to start making notes and prioritize. Yes, she’s my boss. It feels so intimidating that now I have to think that my epilepsy has surfaced to the reality of my life and I just wished she wouldn’t of said it. Now I wished I never mentioned it but I felt i had to in case I do have a tonic clonic or an aura, I never wanted her to make me feel like I am so abnormal. It hurts!
    I will start looking for a different workplace I just don’t want to run away all of the time people don’t understand and don’t care. Epilepsy is not something that is noticeable like down syndrome. So yes, hopefully my confidence may come back again one day and I am a very considerate human being because not everyone will have a good day! Telling anyone ‘ hello, how are you and have a great day ‘ does make a difference to a lot of us please think of doing this. I know I may not have the same life expectancy as someone who lives normal and doesn’t have to worry about being disappointed and of course my Grammar is not the best. I just want one day to just be a good day without anyone telling me negative words. I do the best I can and of course thank goodness I had children before I got worse, and I did loose one this year due to leukemia. Now I just have and need someone to help me just to be there and say,’ yes it’ll be ok and no you are still alive and it just wasn’t your time so don’t feel bad’ just let me have someone to pay attention is an awesome feeling and to have someone listen at ti.es when I write. Mentally and physically I know I may not last if I keep letting bad days get to me. I will try to read your nice links, Phylis I thank you for all your special writing in making words sound ‘ hopeful ‘ I will try.
    
    LikeLiked by 3 people
    
    Comment by Mirna — November 6, 2022 @ 12:10 AM
Mirna, please don’t give up. You’ve come this far.

Here are a few hints, which hopefully will help.

Memory Tips You (Hopefully) Won’t Forget! https://epilepsytalk.com/2022/02/05/memory-tips-you-hopefully-wont-forget/

Memory games to boost your brain… https://epilepsytalk.com/2022/02/07/memory-games-to-boost-your-brain-3/

I know this sounds trite, but I have a friend who came out of brain surgery with her executive functions, nicked.

After two years of rehab, she still was a basket case.

But with perseverance (and Sukoku!) she brought herself back, like a Phoenix rising from the ashes.

Today, she is fully functioning, taking only maintenance meds for epilepsy.

If she can do it, so can you!

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Comment by Phylis Feiner Johnson — November 5, 2022 @ 10:02 AM

Reply
A couple of other categories of critical importance that should be mentioned (regardless of whether or not they are formally categorized) are (A) spatial memory and (B) emotional. The 1st, in a day-to-day sense, can give way to self-loathing and a loss of work efficiency. The elder-lost-in-the-parking-lot is too familiar and too universal, but the I-cannot-describe-the-layout-of-my-own-bedroom-when-the-door-is-closed memory loss makes one feel traumatized and even suicidally depressed when a patient experiences loss suddenly and harshly such as after status epilepticus. Likewise, if one becomes aware that feelings of comfort, affection, and stability just aren’t properly associating to a loved one, suicidal ideation can flourish. In light of these experiences, the best decision I made in life was to tell the surgeons to go away and leave me alone (especially never regrettable with the latest drug, lacosamide, restoring my life).

LikeLiked by 2 people

Comment by Jeffrey Lee Hatcher — November 5, 2022 @ 11:09 AM

Reply
- Thanks for your input and for filling in many blanks.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — November 5, 2022 @ 11:42 AM
  
  Reply
Phylis,
Do you know if your taking seizures meds, if you can take Natural Nootropics for memory? A couple of brand names are Nootrogen or Percepta. There are many others out there, but I don’t know which ones are best.

I take Carbatrol (200mg in am and 100mg at night), and I cannot get an answer from Doctors on this. I also take 112mcg of Synthroid tabs for Thyroid and a whole regimen of morning vitamins, including a multivitamin, probiotic, Vit.C, Omega 3, Vit.K2-Mk7, Hair, skin and nails.

Memory is a real concern and reality with every seizure. This year I had a Shingles Vaccine that gave me Guillain-Barré Syndrome, diagnosed by the pharmacist after a seizure. This made me exempt from the Covid Vaccine and in July I had Covid for 2 weeks as did my husband who had all the vaccines.

Four weeks ago I had a flu shot after discussing my symptoms with Vaccines with the pharmacist he saw no problem since I had flu shots in the past, but within 2 hours I had a seizure and symptoms of Guillain-Barré. This seizure erased alot of my memory. I am regaining much of it back, but it has been a slow process. Needless to say I am done with Vaccines.

Any information on Nootropics would be appreciated.

God Bless…

LikeLiked by 1 person

Comment by Doreen Mack — November 5, 2022 @ 12:38 PM

Reply
- Here are some reference articles:
  
  Nootropics as Cognitive Enhancers: Types, Dosage and Side Effects of Smart Drugs https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9415189/#:~:text=Nootropics%20are%20used%20in%20acute,and%20qualitative%20changes%20in%20consciousness.
  
  The Top-Rated Nootropic Supplements of 2022 https://www.reviewscout.org/top-5-nootropics/?utm_term=best%20for%20memory%20boosting&utm_campaign=RS+-+BRN+-+GEN+-+E/D&utm_source=adwords&utm_medium=ppc&hsa_acc=3985173062&hsa_cam=9526353493&hsa_grp=100532081458&hsa_ad=593066780342&hsa_src=g&hsa_tgt=kwd-314862546454&hsa_kw=best%20for%20memory%20boosting&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gclid=Cj0KCQjwk5ibBhDqARIsACzmgLTcJwtwfFqxt2Z6PZjH6HV9TP9RYbBDa9IFQN_RniS6we1Ic5FiP9IaAnMYEALw_wcB
  
  I hope this helps…
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — November 5, 2022 @ 1:32 PM
  
  Reply
Well done here Phylis. Thank you

LikeLiked by 1 person

Comment by Flower Roberts — November 5, 2022 @ 1:26 PM

Reply
I have focal epilepsy and my short-term memory was always pretty crappy but once I started lamotrigine (the only drug I’ve ever taken), it got much worse. It can result in very embarrassing situations. I have to write everything down. I don’t remember anything I read. I also have no sense of direction whatsoever–it’s like my brain is a compass with no needle. I’ve worked in the same store for eleven years and I still am unsure what floor I’m on when the elevator opens! I also used to have a large vocabulary but now I don’t.

I know it’s the lamotrigine but the doctor denies it could cause memory loss. But I’ve read TONS of (granted) anecdotal evidence that it does. One time on a message board I titled my post with something to do with crappy memory and people said they knew it’d be about lamotrigine before they even read it. I wish I had some hard evidence because I can see the difference in myself. Even in low-stakes situations–I started playing a video game I haven’t played in fifteen years and can’t get through it without checking the map obsessively, yet when I played it in high school I know I had no problems whatsoever! It’s depressing and embarrassing.

LikeLiked by 1 person

Comment by Hetty Eliot — November 5, 2022 @ 11:03 PM

Reply
- Hetty,
  
  I was in lamotrigine 150mg twice a day for over 10 years.
  I am a certified pharmacy Technician. This is the reason I was able to get something because I was persistent that I was going to know something about prescriptions drugs. Because pharmaceutical companies want you to keep getting prescriptions for the public and they don’t want you to know that everything starts from what you put in your mouth ( after a couple of years; I started keto diet and intermittentfasting, also some weekends I do omad, ‘one meal a day’, definitely the less process synthetic foods. The better. I know is not cheap). So therefore I started loosing my words, my speech got bad on wanting to get it out but sometimes I froze, the biggest problem was that darn rash most of us get from lamotrigine is a big side effect. So I discovered that some generic drugs are not made the same even though pharmacists/druggists have been educated that it’s no difference. So I decided to go with the apotex generic brand and it worked no more rashes but my tonic clonics didn’t get better specialy in very stressful situations throughout life. Then I started having double vision and that’s when I said, I am not taking this prescription anymore I was able to be reassessed by my epileptologist and did about 2 and a half weeks in (emu) epilepsy monitoring unit, the second time. So I was off meds and finally had a big tonic clonic, he discovered it was a frontal lobe tonic clonic for the 1st time in my life I had a diagnosis over 30yrs and finally I mentioned to him, I believe I should be on clobazam. He thought of it and agreed. He prescribed my dose and I found out I need apotex in the morning and tevapharm at night. You see, I still had trouble with these generic medications by making my kinetics malfunction in the day time with teva generic, i also had to start wearing prism eyeglasses after lamotrigine. All my 3 kids did prescription eyeglasses too. So then I was able to be ok afterwards. I have never had a tonic clonic since only auras but they changed to something different than before and I still have dejàvú. Still my memory has not gotten better. I have forgotten most of childhood memories only remember abuse most of the time. I have not had any guidance from family or anyone only my wonderful children, I did divorce more than 10 years ago due to him committing a crime which was something that should of been done long before, my gut told me! All I want now is to be living in peace obviously I lacked looking after myself only my kids so yes it is not easy at times. Some of us have similar stories to tell and I know when I go, I rather be ashes since I got no other family. Being an empty nest does make you think in a different mentality. I’ve seen too many elders suffer way too much and I do not want to be in any geriatric ward!
  Just someone’s story.
  
  Thanks
  
  LikeLiked by 2 people
  
  Comment by Mirna — November 6, 2022 @ 9:42 AM
  
  Reply
  - Thank you for sharing your story. I’m very fortunate in that I don’t have tonic clonic seizures. I sort of just float along like a space cadet. I know generics are not all the same but my insurance doesn’t cover the brand name and my doctor probably would never listen that I’d want brand name because I’m not having active seizures. It’s scary how they just throw drugs at people and there’s no real clear data on what works well.
    
    LikeLiked by 1 person
    
    Comment by Hetty Eliot — November 6, 2022 @ 8:20 PM
There a gazillion other meds out there. Why does your doctor keep insisting on lamotrigine?

Maybe if you kept a seizure or memory diary, he’d get the point?

Or maybe it’s time for a second consult.

LikeLike

Comment by Phylis Feiner Johnson — November 6, 2022 @ 8:44 AM

Reply
- The thing is, I’m lucky that I’ve never had any other side effects besides being dumb. I’ve never thought about changing the drug, although I lowered the dose because I think it makes me space out even worse at higher doses. My seizures annoyingly never showed up on tests and I think it would be too complicated to try to change what I’m taking because the nature of my epilepsy is hard to nail down.
  
  LikeLiked by 1 person
  
  Comment by Hetty Eliot — November 6, 2022 @ 8:13 PM
  
  Reply
RE: Generics…You people probably know this but, generics are made of 80% of the name brand drug and 20% of unknown filler. That’s the mystery and the misery of it.

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Comment by Phylis Feiner Johnson — November 6, 2022 @ 8:27 PM

Reply
- You’re absolutely right re: generics and fillers. I’ve been so fortunate to have a drug plan that pays for Brand name. The pharmacy we typically use gave me the generic (lamatrogine?) of Lamictal. Seizures started within 2 days.
  
  LikeLiked by 1 person
  
  Comment by Roy Anthony — November 14, 2022 @ 9:43 PM
  
  Reply
  - Yes, you are very fortunate. I was never going to make it on lamotrigine I wish I would of stopped sooner. Lamictal did work better for me once I was able to be approved since the 1 generic of mine became manufacturer short. That was back then when I used to get it prescribed. Now I feel better with the one I am on and hopefully my body can cope until I can find some more support. So many of us are just humans and are living alone for a long time. I am slowly feeling better with this group!
    
    LikeLiked by 1 person
    
    Comment by Mirna — November 14, 2022 @ 9:59 PM
- re: generic lamotrigine – I don’t know if the specialized extended release version exists in a generic yet. If you can get your doc to prescribe Lamictal XR, the insurance folk cannot force any alternatives (but a generic might be out – unfortunately).
  
  LikeLiked by 1 person
  
  Comment by Jeffrey Lee Hatcher — December 14, 2022 @ 7:01 PM
  
  Reply
Mirna, have you considered an in-person support group? The Epilepsy Foundation has support groups all over the country.

The one I started — with the EF and a local epileptologist — is fabulous. Sharing, caring, insights, advice, personal histories, stories. You couldn’t ask for more.

If you’re interested in finding an Epilepsy Foundation office near you, click on: https://www.epilepsy.com/local.

Hopefully, you’ll be as lucky as me.

LikeLike

Comment by Phylis Feiner Johnson — November 14, 2022 @ 10:31 PM

Reply
- I really doubt there are any where I live. It is close to Greenland, just for a work contract only. I do want to go back to the city once I am done here and be close to my kids again. So many have epilepsy here and there are no organizations or group programs nor support!
  I will try to see if I can meet any groups online meanwhile it will still help, thank you Phyllis.
  
  LikeLiked by 1 person
  
  Comment by Mirna — November 14, 2022 @ 11:13 PM
  
  Reply
There are lots of epilepsy groups on Facebook. Just search for “epilepsy” and/or “seizures” and loads of epilepsy group pages will come up.

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Comment by Phylis Feiner Johnson — November 15, 2022 @ 8:23 AM

Reply
It looks like this is an expansion of the project Kurzweil reported on above, from 2018. But I can’t find anything about it after that. In fact, it looks like Lawrence Livermore has dropped its neurological research altogether…

https://www.llnl.gov/news/llnl%E2%80%99s-neurotech-innovation-featured-darpa%E2%80%99s-60th-anniversary-symposium

LikeLike

Comment by StopYourSericulture — December 25, 2022 @ 2:21 PM

Reply
> Interestingly, epilepsy-linked memory loss worries more patients than doctors!

Indeed. And the doctors don’t seem to understand why I might consider suicide if I can no longer score 98.5 %-tile on an IQ test, or why I’d object to “neuro-psych testing” if I didn’t know and weren’t prepared for the fact that it’s essentially an IQ test. Worse, they’d feel justified in locking me up in their psych-wards and declaring me “mentally ill” if they understood how serious I was about that and that coercion and humiliation makes it worse. Thankfully, because I generally have a rational, educated, academic demeanor, they don’t understand that I also feel emotions.

But I digress….

LikeLiked by 1 person

Comment by StopYourSericulture — December 25, 2022 @ 2:26 PM

Reply
Phylis-

I have missed your ‘news’- received it for at least a couple years, then it was discontinued………………? I’d appreciate if you could start sending it to me again. karen629@charter.net
It looks like I received it up until 2021.
Hey- have you ever given thought about writing a book- just compose it with the articles you submit on this site? It is something every epileptic should be able to own!

LikeLiked by 1 person

Comment by Karen — December 29, 2022 @ 6:53 PM

Reply
- Thank you Karen. I’m honored.
  
  Sounds like you just need to resubscribe to continue receiving Epilepsy Talk. (There’s nothing I can do on my end, because it’s an independent website.)
  
  But I hope you are able to connect and stay connected.
  
  With wishes for a blessed new year.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — December 29, 2022 @ 8:42 PM
  
  Reply

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I am greatly hurt by these news on our 4 parts of the brain because I have ro rely only on myself like so many and to remind myself is the last thing on my mind due to being a single mother for over 10 years plus not able to think for myself was hard. No one has ever cared doctors have been at times very good informants and at times bad.
Looking forward to the future I rather die than to be a vegetable and not have any memory, I can do that myself because I have had enough of this life and lots of time to think about it!

LikeLiked by 2 people

Comment by Mirna — November 5, 2022 @ 9:35 AM

Mirna, While I understand your feelings for I had been in your shoes few times before, I’ve come to learn that I can take advantage of technology to remind me of every significant day of my life & special events I needed to take care of for my wellbeing.
While I believe Epilepsy medication side effects & grand mal seizures had literally destroyed my memory into frustrating search for recollection, setting up my IPhone calendar to alert & refresh my memory has significantly reduced my frustration.
I hope you consider trying my experience & see how technology can improve your condition.
Best wishes!
Gerrie

LikeLiked by 1 person

Comment by Gerrie — November 5, 2022 @ 9:13 PM

- Thank you to all the responses. It means a lot to my well being.
  I do want so much more of course; I want my manager to stop telling me that I have memory issues because of my epilepsy, I have to start making notes and prioritize. Yes, she’s my boss. It feels so intimidating that now I have to think that my epilepsy has surfaced to the reality of my life and I just wished she wouldn’t of said it. Now I wished I never mentioned it but I felt i had to in case I do have a tonic clonic or an aura, I never wanted her to make me feel like I am so abnormal. It hurts!
  I will start looking for a different workplace I just don’t want to run away all of the time people don’t understand and don’t care. Epilepsy is not something that is noticeable like down syndrome. So yes, hopefully my confidence may come back again one day and I am a very considerate human being because not everyone will have a good day! Telling anyone ‘ hello, how are you and have a great day ‘ does make a difference to a lot of us please think of doing this. I know I may not have the same life expectancy as someone who lives normal and doesn’t have to worry about being disappointed and of course my Grammar is not the best. I just want one day to just be a good day without anyone telling me negative words. I do the best I can and of course thank goodness I had children before I got worse, and I did loose one this year due to leukemia. Now I just have and need someone to help me just to be there and say,’ yes it’ll be ok and no you are still alive and it just wasn’t your time so don’t feel bad’ just let me have someone to pay attention is an awesome feeling and to have someone listen at ti.es when I write. Mentally and physically I know I may not last if I keep letting bad days get to me. I will try to read your nice links, Phylis I thank you for all your special writing in making words sound ‘ hopeful ‘ I will try.
  
  LikeLiked by 3 people
  
  Comment by Mirna — November 6, 2022 @ 12:10 AM

Mirna, please don’t give up. You’ve come this far.

Here are a few hints, which hopefully will help.

Memory Tips You (Hopefully) Won’t Forget! https://epilepsytalk.com/2022/02/05/memory-tips-you-hopefully-wont-forget/

Memory games to boost your brain… https://epilepsytalk.com/2022/02/07/memory-games-to-boost-your-brain-3/

I know this sounds trite, but I have a friend who came out of brain surgery with her executive functions, nicked.

After two years of rehab, she still was a basket case.

But with perseverance (and Sukoku!) she brought herself back, like a Phoenix rising from the ashes.

Today, she is fully functioning, taking only maintenance meds for epilepsy.

If she can do it, so can you!

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Comment by Phylis Feiner Johnson — November 5, 2022 @ 10:02 AM

A couple of other categories of critical importance that should be mentioned (regardless of whether or not they are formally categorized) are (A) spatial memory and (B) emotional. The 1st, in a day-to-day sense, can give way to self-loathing and a loss of work efficiency. The elder-lost-in-the-parking-lot is too familiar and too universal, but the I-cannot-describe-the-layout-of-my-own-bedroom-when-the-door-is-closed memory loss makes one feel traumatized and even suicidally depressed when a patient experiences loss suddenly and harshly such as after status epilepticus. Likewise, if one becomes aware that feelings of comfort, affection, and stability just aren’t properly associating to a loved one, suicidal ideation can flourish. In light of these experiences, the best decision I made in life was to tell the surgeons to go away and leave me alone (especially never regrettable with the latest drug, lacosamide, restoring my life).

Comment by Jeffrey Lee Hatcher — November 5, 2022 @ 11:09 AM

Thanks for your input and for filling in many blanks.

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Comment by Phylis Feiner Johnson — November 5, 2022 @ 11:42 AM

Phylis,
Do you know if your taking seizures meds, if you can take Natural Nootropics for memory? A couple of brand names are Nootrogen or Percepta. There are many others out there, but I don’t know which ones are best.

I take Carbatrol (200mg in am and 100mg at night), and I cannot get an answer from Doctors on this. I also take 112mcg of Synthroid tabs for Thyroid and a whole regimen of morning vitamins, including a multivitamin, probiotic, Vit.C, Omega 3, Vit.K2-Mk7, Hair, skin and nails.

Memory is a real concern and reality with every seizure. This year I had a Shingles Vaccine that gave me Guillain-Barré Syndrome, diagnosed by the pharmacist after a seizure. This made me exempt from the Covid Vaccine and in July I had Covid for 2 weeks as did my husband who had all the vaccines.

Four weeks ago I had a flu shot after discussing my symptoms with Vaccines with the pharmacist he saw no problem since I had flu shots in the past, but within 2 hours I had a seizure and symptoms of Guillain-Barré. This seizure erased alot of my memory. I am regaining much of it back, but it has been a slow process. Needless to say I am done with Vaccines.

Any information on Nootropics would be appreciated.

God Bless…

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Comment by Doreen Mack — November 5, 2022 @ 12:38 PM

Here are some reference articles:

Nootropics as Cognitive Enhancers: Types, Dosage and Side Effects of Smart Drugs https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9415189/#:~:text=Nootropics%20are%20used%20in%20acute,and%20qualitative%20changes%20in%20consciousness.

The Top-Rated Nootropic Supplements of 2022 https://www.reviewscout.org/top-5-nootropics/?utm_term=best%20for%20memory%20boosting&utm_campaign=RS+-+BRN+-+GEN+-+E/D&utm_source=adwords&utm_medium=ppc&hsa_acc=3985173062&hsa_cam=9526353493&hsa_grp=100532081458&hsa_ad=593066780342&hsa_src=g&hsa_tgt=kwd-314862546454&hsa_kw=best%20for%20memory%20boosting&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gclid=Cj0KCQjwk5ibBhDqARIsACzmgLTcJwtwfFqxt2Z6PZjH6HV9TP9RYbBDa9IFQN_RniS6we1Ic5FiP9IaAnMYEALw_wcB

I hope this helps…

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Comment by Phylis Feiner Johnson — November 5, 2022 @ 1:32 PM

Well done here Phylis. Thank you

Comment by Flower Roberts — November 5, 2022 @ 1:26 PM

I have focal epilepsy and my short-term memory was always pretty crappy but once I started lamotrigine (the only drug I’ve ever taken), it got much worse. It can result in very embarrassing situations. I have to write everything down. I don’t remember anything I read. I also have no sense of direction whatsoever–it’s like my brain is a compass with no needle. I’ve worked in the same store for eleven years and I still am unsure what floor I’m on when the elevator opens! I also used to have a large vocabulary but now I don’t.

I know it’s the lamotrigine but the doctor denies it could cause memory loss. But I’ve read TONS of (granted) anecdotal evidence that it does. One time on a message board I titled my post with something to do with crappy memory and people said they knew it’d be about lamotrigine before they even read it. I wish I had some hard evidence because I can see the difference in myself. Even in low-stakes situations–I started playing a video game I haven’t played in fifteen years and can’t get through it without checking the map obsessively, yet when I played it in high school I know I had no problems whatsoever! It’s depressing and embarrassing.

Comment by Hetty Eliot — November 5, 2022 @ 11:03 PM

Hetty,

I was in lamotrigine 150mg twice a day for over 10 years.
I am a certified pharmacy Technician. This is the reason I was able to get something because I was persistent that I was going to know something about prescriptions drugs. Because pharmaceutical companies want you to keep getting prescriptions for the public and they don’t want you to know that everything starts from what you put in your mouth ( after a couple of years; I started keto diet and intermittentfasting, also some weekends I do omad, ‘one meal a day’, definitely the less process synthetic foods. The better. I know is not cheap). So therefore I started loosing my words, my speech got bad on wanting to get it out but sometimes I froze, the biggest problem was that darn rash most of us get from lamotrigine is a big side effect. So I discovered that some generic drugs are not made the same even though pharmacists/druggists have been educated that it’s no difference. So I decided to go with the apotex generic brand and it worked no more rashes but my tonic clonics didn’t get better specialy in very stressful situations throughout life. Then I started having double vision and that’s when I said, I am not taking this prescription anymore I was able to be reassessed by my epileptologist and did about 2 and a half weeks in (emu) epilepsy monitoring unit, the second time. So I was off meds and finally had a big tonic clonic, he discovered it was a frontal lobe tonic clonic for the 1st time in my life I had a diagnosis over 30yrs and finally I mentioned to him, I believe I should be on clobazam. He thought of it and agreed. He prescribed my dose and I found out I need apotex in the morning and tevapharm at night. You see, I still had trouble with these generic medications by making my kinetics malfunction in the day time with teva generic, i also had to start wearing prism eyeglasses after lamotrigine. All my 3 kids did prescription eyeglasses too. So then I was able to be ok afterwards. I have never had a tonic clonic since only auras but they changed to something different than before and I still have dejàvú. Still my memory has not gotten better. I have forgotten most of childhood memories only remember abuse most of the time. I have not had any guidance from family or anyone only my wonderful children, I did divorce more than 10 years ago due to him committing a crime which was something that should of been done long before, my gut told me! All I want now is to be living in peace obviously I lacked looking after myself only my kids so yes it is not easy at times. Some of us have similar stories to tell and I know when I go, I rather be ashes since I got no other family. Being an empty nest does make you think in a different mentality. I’ve seen too many elders suffer way too much and I do not want to be in any geriatric ward!
Just someone’s story.

Thanks

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Comment by Mirna — November 6, 2022 @ 9:42 AM

- Thank you for sharing your story. I’m very fortunate in that I don’t have tonic clonic seizures. I sort of just float along like a space cadet. I know generics are not all the same but my insurance doesn’t cover the brand name and my doctor probably would never listen that I’d want brand name because I’m not having active seizures. It’s scary how they just throw drugs at people and there’s no real clear data on what works well.
  
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  Comment by Hetty Eliot — November 6, 2022 @ 8:20 PM

There a gazillion other meds out there. Why does your doctor keep insisting on lamotrigine?

Maybe if you kept a seizure or memory diary, he’d get the point?

Or maybe it’s time for a second consult.

Comment by Phylis Feiner Johnson — November 6, 2022 @ 8:44 AM

The thing is, I’m lucky that I’ve never had any other side effects besides being dumb. I’ve never thought about changing the drug, although I lowered the dose because I think it makes me space out even worse at higher doses. My seizures annoyingly never showed up on tests and I think it would be too complicated to try to change what I’m taking because the nature of my epilepsy is hard to nail down.

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Comment by Hetty Eliot — November 6, 2022 @ 8:13 PM

RE: Generics…You people probably know this but, generics are made of 80% of the name brand drug and 20% of unknown filler. That’s the mystery and the misery of it.

Comment by Phylis Feiner Johnson — November 6, 2022 @ 8:27 PM

You’re absolutely right re: generics and fillers. I’ve been so fortunate to have a drug plan that pays for Brand name. The pharmacy we typically use gave me the generic (lamatrogine?) of Lamictal. Seizures started within 2 days.

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Comment by Roy Anthony — November 14, 2022 @ 9:43 PM

- Yes, you are very fortunate. I was never going to make it on lamotrigine I wish I would of stopped sooner. Lamictal did work better for me once I was able to be approved since the 1 generic of mine became manufacturer short. That was back then when I used to get it prescribed. Now I feel better with the one I am on and hopefully my body can cope until I can find some more support. So many of us are just humans and are living alone for a long time. I am slowly feeling better with this group!
  
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  Comment by Mirna — November 14, 2022 @ 9:59 PM
re: generic lamotrigine – I don’t know if the specialized extended release version exists in a generic yet. If you can get your doc to prescribe Lamictal XR, the insurance folk cannot force any alternatives (but a generic might be out – unfortunately).

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Comment by Jeffrey Lee Hatcher — December 14, 2022 @ 7:01 PM

Mirna, have you considered an in-person support group? The Epilepsy Foundation has support groups all over the country.

The one I started — with the EF and a local epileptologist — is fabulous. Sharing, caring, insights, advice, personal histories, stories. You couldn’t ask for more.

If you’re interested in finding an Epilepsy Foundation office near you, click on: https://www.epilepsy.com/local.

Hopefully, you’ll be as lucky as me.

Comment by Phylis Feiner Johnson — November 14, 2022 @ 10:31 PM

I really doubt there are any where I live. It is close to Greenland, just for a work contract only. I do want to go back to the city once I am done here and be close to my kids again. So many have epilepsy here and there are no organizations or group programs nor support!
I will try to see if I can meet any groups online meanwhile it will still help, thank you Phyllis.

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Comment by Mirna — November 14, 2022 @ 11:13 PM

There are lots of epilepsy groups on Facebook. Just search for “epilepsy” and/or “seizures” and loads of epilepsy group pages will come up.

Comment by Phylis Feiner Johnson — November 15, 2022 @ 8:23 AM

It looks like this is an expansion of the project Kurzweil reported on above, from 2018. But I can’t find anything about it after that. In fact, it looks like Lawrence Livermore has dropped its neurological research altogether…

https://www.llnl.gov/news/llnl%E2%80%99s-neurotech-innovation-featured-darpa%E2%80%99s-60th-anniversary-symposium

Comment by StopYourSericulture — December 25, 2022 @ 2:21 PM

> Interestingly, epilepsy-linked memory loss worries more patients than doctors!

Indeed. And the doctors don’t seem to understand why I might consider suicide if I can no longer score 98.5 %-tile on an IQ test, or why I’d object to “neuro-psych testing” if I didn’t know and weren’t prepared for the fact that it’s essentially an IQ test. Worse, they’d feel justified in locking me up in their psych-wards and declaring me “mentally ill” if they understood how serious I was about that and that coercion and humiliation makes it worse. Thankfully, because I generally have a rational, educated, academic demeanor, they don’t understand that I also feel emotions.

But I digress….

Comment by StopYourSericulture — December 25, 2022 @ 2:26 PM

Phylis-

I have missed your ‘news’- received it for at least a couple years, then it was discontinued………………? I’d appreciate if you could start sending it to me again. karen629@charter.net
It looks like I received it up until 2021.
Hey- have you ever given thought about writing a book- just compose it with the articles you submit on this site? It is something every epileptic should be able to own!

Comment by Karen — December 29, 2022 @ 6:53 PM

Thank you Karen. I’m honored.

Sounds like you just need to resubscribe to continue receiving Epilepsy Talk. (There’s nothing I can do on my end, because it’s an independent website.)

But I hope you are able to connect and stay connected.

With wishes for a blessed new year.

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Comment by Phylis Feiner Johnson — December 29, 2022 @ 8:42 PM

Epilepsy Talk