Skip to content


    Exciting News for WebMD Members!

    We've been busy behind the scenes building new message boards for you. You'll have new and easier ways to find messages, connect with others, and share your stories.

    And, this will all be available on your smartphone or other mobile device!

    What Do You Need to Do?

    The message board you're used to will be closing in the coming weeks. While many of your boards will be making the move to our new home, your posts will not. Want to keep a discussion going? Save posts you want to continue (this includes your member profile story), so that you can re-post them in the new message boards.

    Keep an eye here and on your email inbox, we'll be back in touch soon to give you all the information you need!

    Yours in health,
    WebMD Message Boards Management

    Major Memory Loss with Epilepsy
    kittyqqq posted:
    Is it normal to have a horrible memory when youve had many seizures, tonic clonic and complex partial? If I dont write things down, i will never remember them. Instant recall is also hard. It's embarrassing. does this happen to anyone else?
    dancer86442 responded:
    Hi again Meg,

    You aren't alone there, either. Memory Loss can be chalked up to frequent seizures. But, a More Likely source would be your medications.

    Notes, chalk boards, dry erase. Exercise your brain Daily. Word games, puzzles, etc. Instant Recall? I just stand quiet till someone clues me in/reminds me. Even then it's likely to be forgotten.

    Since your seizures are uncontrolled on your med/dose, consider getting back on the med merrygoround, when your Doc is available. Or do some more 'homework' on Alternative treatments. The VNS may work for you. But, you do have other options, also.

    Love Candi
    kittyqqq replied to dancer86442's response:
    Thanks Candi, I've been looking into a partial lobectomy. i am so sick of living in constant fear. but before i go that far, i will do everything else i can. Im sure theres at least a couple of medications i havent tried....thanks for your advice ~meg
    dancer86442 replied to kittyqqq's response:
    Hi Meg,

    Have you considered any of the Diets for Adults? Atkins, Modified Atkins or GARD.

    You do not have to join Phylis's site to read her Articles. There are numerous ones you may want to read on new meds, treatments, etc. Botttom of her page just clik previous page or next page and browse topics till you see something Interesting. MY Personal Opinion: It's All Pertinent to Epilepsy & All Interesting & well written.

    Love Candi
    clarinet2 replied to kittyqqq's response:
    Meg, I can relate 100% to the memory loss due to seizures. It was very frustrating and I had to have notes with me all the time. A journal of my 2-do list, check off sheet for my medications in the pill box, doctors appointments, hair cuts, the list could go on forever.

    After the right temperal lobectomy my memory has increased dramatically. There are some things from the past that I may remember, but not too much from my teen years when I was still having seizures. Most of my teenage years have been lost somewhere in cyberspace

    After the brain surgery the clinic did another neuropsych evaluation and I could not believe how much my long term and short term memory had improved. The doctors also stated in the results that my self esteem improved.

    Now I am in middle age and starting the peri-menopause stage which I am giving the name perimental pause because I am working too fast and sometimes misplace a note or forget a simple duty at work.

    dancer86442 replied to clarinet2's response:
    Hi Dana,

    Peri-meno?? Mine started at age 42. Ended at 50? I never understood why women Dread this phase. I Welcomed it. Even w/ the discomforts/side effects. My Mom suggested Black Cohosh. But, it didn't sit well on my tummy. I had Knife Pains. OUCH! No Thank You! So I did my Homework & Soy Isoflavone turned up. I tried it & All side effects diminished & /or were Very Infrequent.
    Consider this. Asian women eat this supplement every day. Asian Women do not experience Any discomforts.

    You know what? My teen yrs are in cyberspace, also. In fact, a Lot of my memories, B4 & after seizure activity began, are Gone. Yet, from my report cds I noted I had Good Grades. Yet I can't recall classes or teachers or school mates Or Growing Up w/ Family. Hubby & Sue are always Amazed at bits or Pieces I forget. I get ragged on a Lot. But, I take it w/ a smile & a grain of salt. I have accepted that "I'm Not Alone". No matter what caused the memory loss. I know I like to blame meds, but, I realize it could be a combo of meds/seizures &/or Past Traumatic experiences. Physical & Mental. . Especially, since my Sis experiences better recall then I do. And she went untreated for over 50 yrs.

    Sorry for ramblin. Hope you have a Great Day. Know I Care! HUGS!

    Love Candi
    kittyqqq replied to dancer86442's response:
    ok so ive gotten mixed messages on the lobectomy. I'm not sure if it improves your memory or erases it. All I know is I want my memory back and i hope i can find it. thank you for all yor responses.
    dancer86442 replied to kittyqqq's response:
    Hi Meg,

    Well, I haven't had surgery. Dana says it improved hers. Peri-meno & aging are starting to catch up Though.

    Meg, this is where ya gotta work w/ your DRS. They need to find out if you are even eligible for surgery. Then determine where to go from there. But, individual results Do Vary. And as w/ all Treatments, "What works for one may not work for another". That includes regaining memory. It will depend on where your Focal Point is. (Origin of Seizures) & how much of the problem area is removed.

    Or just get back on the med merry-go-round. It is Your Choice. You have Options.

    Keep Learning. Asking Questions. HUGS!

    Love Candi.
    Norton47 responded:
    Hi Kitty,
    like you my memory has gotton worse, and I must write everything dow. But a friend an be talking to me on the phone, and it goes in one ear and out the other. I can't tell you what we were talking about 5 minutes ago.

    I have 4 kinds of seizures, including partial complex and tonic clonic. I just assumed that I was burning out a few more brain cells with each seizure.

    But Dancer may be right about the medications. My epilepsy is resistant to medications, and I'm currenty taking 7 different ones. Poor sleep habits, nightmares, always in another world, and sometimes seem drunk. That alone is enough to effect anyones memory I guess.
    dancer86442 replied to Norton47's response:
    Hello Norton,

    It's good to see you again. I guess you are still keeping busy?? Thanks for taking 'time out' to respond to Meg.

    7 meds??? Shoot yeah, that would be enough to hamper Memory. When are they gonna start weaning you Off some of them meds? Try to get you on Mono-Therapy or Alternative Treatments?

    Did you catch my post about 'electrical vehicles/transpo'? Approved for PPL w/ Epilepsy. HUGS!

    Love Candi
    saxofone1 responded:
    Hi kitty,

    I had a problem with memory before my lobectomy in '02. Years before the lobect a doctor told me that my ep would eventually affect my hippocampus. I believe that area of the brain has a lot to do with memory in addition to the temp lopes.(is that right, Candi?)

    One of my biggest problems was my short-term memory. I knew the stuff but couldn't readily recall it. FRUSRATING!!!! People's names just wouldn't come to mind until they were gone. UGH!! I feared up-coming tests because I knew the material but I wasn't able to immediately recall it.

    Like Candi, I started using small notes or visual reminders of many things. Have you thought about keeping a bullentin board in an area that you use daily. You know, next to the front door, on your bedroom wall, next to the computer. Having those notes in an area that is readily available might be of help.

    My lobectomy helped my memory greatly. I started recalling faces, names, streets, phone numbers, etc that I hadn't thought about in yrs. These things were deep in my memory.

    We take our meds to slow the over-active brain impulses. It is a strong possibility that the meds are also slowing down your immediate recall or short memory. (am I on the right track, Candi?)

    We all are forgetful about something. Find an activity that you are comfortable with that might help strengthen your memory.

    Frustrating and embarrasing as this is for all of us, we can't give in to it. I wish you well on your search for a solution or help in this discomfort.


    As Candi suggests, find some word puzzles,
    dancer86442 replied to saxofone1's response:
    You are Rite on Track, Angie. I agree Seizures (depending on the area of Origin) &&&& Meds can contribute to memory problems.

    Love ya & Hugs!

    Love Candi
    clarinet2 replied to kittyqqq's response:
    Meg, I forgot to write in my message that I did not go through with the lobectomy to get all of memory back, I just wanted to reduce the seizures or possibly become seizure free.

    The 12-15 complex partial seizures each month were wearing me down and I did not want my family to be walking on pins and needles especially when I lived alone. I was also concerned with aging about the possibility of having convulsions again.

    It was great to have a dramatic drop with medication levels. I only have to take 2 medications in the AM and 2 in the evening which is a dramatic decrease compared to 3-4 in the AM, noon and evening.

    hawiian_girl_73 responded:
    yes it can.

    my short term memory is shot.

    SOmone can say something to me and I can not remember what they said 5 minutes later, and it is ususaly when they are asking me about something or to do something or the like. I have a real hard time with it.

    I have Complex Partial sz and have for 8 documetned years.

    my mom and neurologist think by the given hx that they have talked about along with me that I have had EP all my life.

    I was still wetting the bed at 16 years old. Sz he said, probably Grand Mal.

    and now with the CPSs, Iha ve impaired szs. MOst of the time I can never recall anything. and go on not remembering i even had one.

    My husband and my mom can say stuff to me but i cna notrespond and other times zippo.

    Ihave wandered out in the street in the neighborhood multiple times wandeered in the house several times, was only told about this, I do not remember it atall.

    I have bizzare behaviour as well.

    but yes as far as the memory goes yes you can have a messed up memeory, I have a head injury that has caused some brain damamge.

    in dec of 2002 I skidded of the raod at an intersetion and hit a tree head on. Was hauled away and had my ist sz 8 months later it was a grand Mal. The CPS actcvitivy moved so fast that all anyone could see at that point was teh GM. All of that was the night before my college graduation.

    we were all stuffed in a motel to move to PHX after teh graduation. my mom, her sister, and a really close friend.

    Tey were wst ill up and whitnessed it for about a minute, I guess before they woke my mom up to finish wat ching it.

    REal life cahnger.

    Got to PHX and fouinf a neuro and started with the testing.

    after 6 months of tes ting they determined I had the disorder. Left Anterior Temporal Lobe EP.

    sorry I ramabled, but yes you can lose your memeery with repeated szs, I did.

    Hawii Girl
    renaldi1 responded:
    Hi kittyqqq,

    I've struggled with grand mal, juvenile myoclonic, petit mal, etc. since I was a child. My memory really started going bad with menopause and an increase of my seizure activity. I added Keppra and began smoking marijuana. Although marijuana contributes to memory malfunction, it beats out the aura.

    I have to write everything down in my calendar, sticky notes on my bathroom mirror, etc. I guess I've just surrendered to a poor memory and choose to work with it by writing things down. I'm lucky to have my family close to help with the memorization issues!

    Helpful Tips

    Journals posted by Meetz
    Meetz posted: Hi there. I don't want to sound bossy or presumptuous, but after 44 years of practice with E, I have a bit of experience. I ... More
    Was this Helpful?
    34 of 44 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

    For more information, visit the Duke Health Epilepsy Center