Epilepsy Talk

Epilepsy and Memory | February 2, 2014

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:

1. 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.

2. 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.

3. Forgetting where we put something, probably a visual-spatial memory process problem.

4. A verbal malfunction, where you know the words or names, but just can’t come up with them.

5. 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:

1. Having a seizure unexpectedly…

2. The legal right or ability to drive…

3. 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.  (Three-fourths of the doctors and just over half of us!)

“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!

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box of the right column and click on “Sign me up!”

Other articles of interest:

A neural device to restore memory http://www.kurzweilai.net/a-neural-device-to-restore-memory?utm_source=KurzweilAI+Daily+Newsletter&utm_campaign=934ee02a1c-UA-946742-1&utm_medium=email&utm_term=0_6de721fb33-934ee02a1c-282058694

Philadelphia researchers to create brain prosthesis to restore memory loss  http://www.newsworks.org/index.php/homepage-feature/item/70216-philadelphia-researchers-to-create-prosthetic-brain-to-restore-memory-loss?linktype=hp_impact

10 Drugs That May Cause Memory Loss  http://www.aarp.org/health/brain-health/info-05-2013/drugs-that-may-cause-memory-loss.html#.UxxvrYQeGh8.facebook

9 Ways To Get The Most Out Of Your Mind  http://www.huffingtonpost.com/2014/06/01/sharp-mind_n_5411762.html?utm_hp_ref=mostpopular

Seizures…Memory…Depression. YES, They Are Linked!   https://epilepsytalk.com/2013/11/17/seizuresmemorydepression-yes-they-are-linked/

Memory games to boost your brain  https://epilepsytalk.com/2012/03/12/boost-your-brain-with-these-fun-games/










  1. On top of lack of memory, I wonder if I’ll ever have a life again. Epilepsy brought mine to a screeching halt, and women have no interest in me AT ALL after I tell them I have epilepsy! also I have yet to find a employer that will accept me after I tell them I have Epilepsy


    Comment by Shawn Wittman — February 2, 2014 @ 8:21 PM

  2. Well Shawn, this story might cheer you up…or at least amuse you…

    Confessions of 30 years with epilepsy…

    When I was first diagnosed as a teen, no one knew what to do with me.

    My parents refused to use the “E” word.

    People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)

    Guys never called back for a second date.

    The Dilantin made me feel like a zombie…I even went into a coma once.

    I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

    I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.)

    And I was constantly on my guard.

    One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold.

    When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.

    So I quickly had to make up some lame story. I couldn’t even have a seizure in peace!

    Epilepsy was my “dirty secret.” Like it or not…

    Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me?

    I was amazed and said to myself: “He’s a keeper!” And he has been for 33 years.

    Then, a few years ago, I almost died.

    My heart stopped, I was in a coma and on life support for 5 days, then in the hospital itself for 5 days, until I was transferred to another hospital for rehab, followed by 4 weeks of out-patient.

    But I still couldn’t button a shirt or tie my shoes, no less find the key board. Exasperation turned to tears.

    I was useless.

    Yet there was certainly time to think. (Almost dying can certainly change your perspective.)

    And I realized I was one of the lucky ones

    After all, I was still alive. And I was better off than a lot of other people who had Cancer, Alzheimer’s, Cerebral Palsy, and Parkinson’s, to name a few.

    So I decided to turn lemons into lemonade.

    I ditched my day job (I had my own freelance writing business for 25 years) and I became a full-time epilepsy advocate…helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.


    Comment by Phylis Feiner Johnson — February 2, 2014 @ 8:52 PM

  3. This is a fantastic article, Phylis. I will definitely share this with my support group next week. Thank you for all your hard work and dedication.


    Comment by charlie — February 3, 2014 @ 6:43 AM

  4. Thanks Charlie!


    Comment by Phylis Feiner Johnson — February 3, 2014 @ 9:24 AM

  5. Great article… memory recall is my major issue, and since I had a brain injury which resulted in the epilepsy, I don’t know which condition has made my memory worse. It is a tough thing to come to terms with, especially when you have a child and you can’t remember certain things about them growing up 😦 But I take lots of photos, which sometimes helps jog the brain… sometimes I have no memory of a photo I have taken and it is a bit scary. But, I do what I can…


    Comment by ti808 — February 3, 2014 @ 11:03 AM

  6. A friend of mine who has brain injury resulting from surgery to remove a tumor, has a similar problem. She can’t remember or recognize any photos of her three children from before the surgery.

    She is heat broken, losing 50 years of memories.


    Comment by Phylis Feiner Johnson — February 3, 2014 @ 11:36 AM

  7. I am a dentist that suffered seizures at age thirteen. I had received many amalgam silver fillings in my early years. I was also a daily gum chewer. This combination leads to mercury vapor exposure that is known to cause seizure activity. I was on mega doses of depicote and tegretol, two anti seizure medication. I was at max when I was accepted to dental school. I had left temporal surgery to help stop seizure activity. Had a grand mal seizure on the clinic floor of the dental school in 1991. The surgery was not the answer. I stayed on the max anti seizure meds and graduated as a dentist. The following year I had many of the old amalgams removed with a excellent dentist who believed it was bad material for the tooth. What I found out was the seizures stopped. I took myself off all meds and never had another seizure for 20 years.

    This past year I had another grand mal and I had many days of mercury vapor exposure with removing many large old silver filings which increase intake of mercury vapor while breathing in the dental office. I now take every precaution as a dentist when removing silver fillings form my patients. It is six months later now and do not take any anti seizure meds and have not suffered any more seizure activity. Is it the exposure to mercury vapor or is it idiopathic, I will let you decide.

    If you suffer from seizure activity be sure to have all exposure to mercury vapor removed to be sure this is not the cause. Don


    Comment by Dr. Donald D. Perman Jr. — February 3, 2014 @ 12:38 PM

  8. Wow! What a tough road you’ve been on.

    But I congratulate you for graduating from dental school, even with the massive hurdles in your life.

    You must be some perserving (and brilliant) soul.

    And I also attribute your brilliance to your conclusion that it was mercury vapor exposure.

    Who else would have ever thought of that?

    (Bet you’re a great dentist too!)


    Comment by Phylis Feiner Johnson — February 3, 2014 @ 1:11 PM

  9. Had to review your article again to remind me how accurate you are. This is Dr. Don Perman and yes I continue to prevent exposure to mercury vapor and have not suffered any more seizures since the one over two years ago. I am blessed to have a great private practice and look forward to the day when every dentist in this country stops placing mercury filled amalgam to replace missing tooth structure.


    Comment by Dr. Donald D Perman Jr. DMD — October 29, 2015 @ 12:15 PM

  10. Hi Dr. Permen,

    Great to hear from you.

    There’s another article I think you’ll find of interest:

    Toxic Chemicals Found In Health Foods, Vitamins, and Supplements



    Comment by Phylis Feiner Johnson — October 29, 2015 @ 3:06 PM

  11. Thank you for the article . This sounds so much like me. I will definitely have my hubby read this. He gets so frustrated when I can’t remember things he has said, etc. I must confess that it feels like I am using my E as an excuse even though I know it isn’t. One thing that is very frustrating for me is my spelling. I used to be a good speller from grade school on. Now I need a dictionary next to my computer. I guess that is a pride thing. I have been through exactly what you said. seizures(controlled at times and uncontrolled at times), meds, surgeryx2, med trials up and down with med changes and dosage changes on and on. I had been a licensed Physical Therapist for 26 years. Finally I have been able to start accepting the fact that I wasn’t safe for my patients anymore. Accepting this has been HUGE for me. But I still have to take it one day at a time.


    Comment by Cindy Fiser — August 22, 2016 @ 8:30 AM

  12. Cindy, I’m so sorry you had to give up your job. That must be a real heartbreak.

    The spelling is a real issue for me. You’d think that after 35+ years of being a writer, I’d be able to spell.

    All I can say is thank heavens for spell-check! I gave up my pride loooooong ago.

    But your attitude is great. You just have to get your husband on board…


    Comment by Phylis Feiner Johnson — August 22, 2016 @ 6:57 PM

  13. This was really good information . I thought it was just me. I see my neurologist soon. I thought I was getting Alzheimer’s . I have been
    Really scared. The way my family treats me
    Is horrible . Because I had a Concussion in
    March. To remind themselves of my injury.
    They, husband adult son. Grandaughter.
    Now shout ” Brain Injury” if I have had siezures..


    Comment by Laura Pullen — July 28, 2017 @ 11:58 AM

  14. Aluminum Lake, Talc, TITANIUM OXIDE & many other metals are in most to every AED they fill at drug stores, hospitals & medical clinics where a pharmacy is located. Just notice what they put in your drugs first before blaming whatever else may make you loose memory. MERCURY fillings are a BIG concern, but when most to all of us take metals in our drugs, HOW are people suppose to remember anything & live a normal life to where our brain is operating at a 8 out of 10, instead of a 1 out of 10 for memory level or even the awareness of different things daily that happens, when METALS in AED’s are killing off brain cell activity ? Everyone who are taking any NEUROLOGICAL DRUGS needs to contact FDA & CDC about this MAJOR PILL POPPING DANGER that are making neurologists make more future ALZHEIMERS diagnosis, which is all a neurologist wants to start with. Whatever a drug may be good for, will cause something worse later. METALS in all neurological drugs, ”brand & generic names” have done their job for the drug industries.


    Comment by C D — September 13, 2017 @ 4:20 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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