ADVERTISEMENT
ADVERTISEMENT
Terri N.

Epilepsy and Memory Loss

I'm brand new to this forum. Looking it over, I don't see my major problem & don't have much info about it. I have lost alot of my memory & it supposedly is because of seizures. I have been on Neurontin since I had some blackouts, which I guess are called Absence Seizures. I just blank out & my eyes get glassy.

I want to know if the memory loss & "feeling weird" are the result of having Epilepsy, or could they be from meds? I also take Effexor XR for depression. I tried to go off that when I thought maybe I'd been mistakenly diagosed with depression before they realized I have Epilepsy. That resulted in some very bad mental & emotional health problems. I'm taking both now, & the memory loss & (sometimes)weird feelings persist. Anyone out there know anything about these issues?

Comments

Re: Epilepsy and Memory Loss

Hey Terri!

 I'm new too and this is exactly why I joined. My absence seizures started when I was 9 and I'm a freshman in college now. I didn't really notice the memory loss until jr. high when I started playing soccer. I couldn't recall anything from the games and it was so frustrating. It got worse after I started having tonic clonic seizures in high school. Basically, everything from kindergarten and up is all a blur. I have about 20 diaries and one day a friend came over and saw them all stacked up and asked why I had so many. I said they can store things automatically in their head, I have to do it manually. I've been told there are many reasons why this happens. Injury to the brain during a seizure sometimes it can even be a side effect of the medication they put you on. I'm taking Lamictal for tonic clonic seizures and memory loss/depression is a side effect. 

 

Wish you the best of luck! Thanks for posting this!

-Sam

Re: Epilepsy and Memory Loss

I am so glad I am not alone in experiencing memory loss. I was diagnosed with epilepsy when I was five years old and have been on medication to control grand mal seizures.  I can count on one hand the amount of seizures I have had since my childhood however, I noticed memory loss around 9 years ago, when I reached 40.  Since then, nine years have passed and its gotten progressively worse.  I have approached two neurologists about this as well as my GP and all of them dismissed my comments. 

Its effected my performance at work and my confidence level has plummeted. I am sure my boss thinks I am a dits because I just can't remember important details.  I have been going crazy with this and I have no soultion.

I need the meds - but they very well be the cause of the memory loss.  At least that's what i believe is the primary factor for this. 

Re: Epilepsy and Memory Loss

According the the Institute of Medicine (IOM), we're all at an increased risk for Alzheimer's dementia.  The quiz is on this website. 

Re: Epilepsy and Memory Loss

Hello terri,

Im not sure what the memory loss is from exactly the meds or the seizures.For me the worst thing is have a seizure right before you have an important meeting where your filling out forms and document's not having your full memory and then being asked why you answer this before and not even remembering what you wrote or when it was you wrote it.  It's very hard for me because I just recently moved to a new state. In my former state I had an care giver to help me with forms here I can't find this service. So frustrating

 

Re: Epilepsy and Memory Loss

Yes, I just know that I keep a diary for everything and write it all down even the smallest things and write them down. It is hard but the best thing is to write it down keep it with you. Remember that the reason why God has given you Epilepsy is because you can cope with it and your strong.

God bless.

Re: Epilepsy and Memory Loss

         Hello, my name is Joe and I just turned 59 years old and have had epilepsy for 46 years starting from the age of 13. I used to have petti-mal seizures avg. 4/day until in 1996. I then finally had brain surgery where they cut part of your brain out thinking they are removing the part where your seizures begin when I was 43 yrs old. The surgery  was a total failure because I then started to have 4-5 grand-mal seizures with side effects of auras throughout every day. Part of my problem was that I forced myself to work for 6 1/2 years after the surgery. I had to put food on the table for me and my kids so I didn't give up. Just being stupified by all of the medicine I took at that time made me very angry inside because I didn't even have the ability to think, so that could have possibly resulted in me having so many seizures a day. (and night by the way too). My short-term memory loss has been dramatic which started immediately after the surgery. It seems to me that I've had the memory loss equal to that of someone 80 yrs old or older. I suppose that could have been because I was on avg. 27 pills a day trying to treat it. I thought that the Drs. were just using me as a guinea pig to see if every different medicine in the book could work for me, but they never found anything to control them. But so much for my sob-story.

          I would like to recommend that no matter whether a person is growing old or has had a bad memory loss they should get a portable voice recorder, the size of a cell-phone to carry around at all times. It may take a while for you to remember to even use it, or to play back the messages, but overall I got to a point to where I use it all of the time. I can then review my messages and eventually remember even the people I am putting names on. I can't remember their face, but I can eventually can recognize them with repeated discussions. It takes time to get to a point to where you will even remember to review your messages but hang in there and Lord willing, He will give you help so you don't have to write anything down.

          Now what I will present to you my testimony which is definitely not to make offense to anybody. There is no way that I want to do any harm or to put a stumbling block in front of anyone so please bear with me because it has been our Lord and His Word that has brought me through the 10 year recovery that I had to go through. Without Him and His Word I know that I wouldn't be alive. I am just wanting to share my personal testimony to everyone.

         I feel very sad for anyone having epilepsy which is a 'thorn in the flesh' in their life because it can be very depressive in our life and eventually be bothersome to those around us. All I can recommend, is the best way to live for me has been in a slow and quiet town where things are going my speed instead of in a fast-paced city or always being around bands or loud arenas or music as I was when I was working. I had to put up with 5 stereos blasting besides all of the machinery in our shop. It wasn't until I moved into a small town and stayed away from loud noise (even such as blasting noise coming from stereos instead of decent music or gatherings with too much loud talking). After having surgery a person can become extremely sensative to this type of thing. All I can do besides this is pray that our good Lord Jesus will come very soon and give us a new body when taking us up into Heaven (1 Thess. 4:13-18; 1 Cor. 15:50-57; Phil. 3:19-21). Please read the Word of God very often and Lord willing, He will comfort you to where you will never want to get away from it.

         God humblized me by having the surgery just so I would be so stupified that He made me willing to finally repent from my sins when He gave me the "effectual" call to be saved for eternal life. When I finally realized how much I had been sinning in my life and had added that much more suffering on our Dear Lord Jesus hanging on the cross for us, I couldn't help but break down repenting from my sins, crying for Him to totally take over my life, because I couldn't do it by myself! I gave Him my entire life because He gave His total life up for me! But then WOW! Immediately all things became new by Him giving me a new born-again regenerated spiritual life to where He has taken my desire to want to sin against Him no longer at all! It's so hard to believe that He made it so easy for me to know for sure that I was actually saved but Scriptures prove it, because it is the ONLY place that we can find the REAL Truth in life.

     Lord willing, you will at least pray for our Dear Lord Jesus to guide you to come to Him submitting your entire life unto Him, repenting from your sins, not just asking for forgiveness. May this be to the glory of His grace; to the One and Only Great Physician, Our Lord Jesus Christ; and to feed upon the best nourishment that anyone can ever take in their life His Holy Word. I really do pray for all of you who have been patient enough to read all of this and totally understand that without Him we can do nothing (John 15:4-5; Rom. 8:5-9). But with Him we will be given the strength to get through our hard lives with our ailments. Yes, we will still be given many trials and tribulations in our life but with His strength we can do whatever is within His will. Please understand that it is His will to be done, so the least we can do is to submit to Him asking Him to lead us with the Holy Spirit giving us the ability to be able to do what is really necessary for our eternal spiritual life to be to the glory of His grace. To really see if you have really been save read 2 Pet. 2; Gal. 5:16-26; John 3:3-7; 2 Cor. 5:17. If your fit all of these descriptions also read these following verses as they will give you confidence that you have nothing to fear or worry about because they will prove to you that we cannot lose our salvation like so many false teachers are preaching today: Phil. 4:8-13; 1 Pet. 1:2-9; John 6:37; 10:27-29; Rom. 8:1; 28-39; Titus 3:3-7; 2 Cor. 5:17; Heb. 12:1-2; 13:5.

         Hopefully this testimony has or will be an uplifting thing to you. With all my love that He has shared with me to everyone, Joe

Re: Epilepsy and Memory Loss

I also have memory loss. I was diagnosed two years ago, and have yet to find a med that has helped with that. I can blackout and not remember a few seconds, a few minutes, or a few hours. I don't always notice that they have happened and generally im still functioning like on autopilot when they happen. My neurologist has said (as far as i go since all peoples seizures are not the exact same) they could lead to full blown tonic clonic seizures or myoclonic ones. The med im on now (lamotrigen) has reduced the amount of time and/ or memory I lose but has not completely eliminated them.

Re: Epilepsy and Memory Loss

I developed epilepsy when I was 16years old. Or atleast had my first grand mal seizure then. I was at my now ex's house and he was trying to talk me into "doing some things with him". He began getting very angered with me, and we got into quite the fight. Next thing I knew I woke up in the floor with him above me screaming and the taste of blood throughout my mouth. I then saw his little brother and his girlfriend bust through the door, then his mother. Then I saw E.M.T.'s sitting around me in the ambulance and a glimpse of being wheeled through the hospital doors. I didn't wake up until two days later in a hospital four hours away. (It specialized in neurology.) I had bit a hole all the way through my tongue two inches wide as well as in my cheeks. I remained in the hospital for two weeks while they ran all sorts of test and etc.. They asked all sorts of medical history questions and whatnot, unfortunately I was adopted. Not everything about my biological history was known, but that my mother did use drugs during pregnancy. After further testing, the oh so awesome EEG's and brain scans. They told me that they believed my seizures where triggered by stress and lack of sleep. But why did they start at 16? Right when I got my drivers license and freedoms, it all gets taken away...Sucked horribly. Then the medicine that they first put me on, Zonegran, which with is a cousin of penicillin (which I am allergic to, and they fully knew this) I lost 30lbs. in one month and broke out in a rash from head to toe. But all leading up to this , there were times that I had the "weird feelings". My friends, family, fiance, and several others have asked me to explain this feeling and it's hard to put it in words. I don't know if this is exactly within the same range of yours, but mine feel almost like I get lightheaded and dizzy with a somewhat feeling of nausea, along with being jumpy, kind of a confusion of what the hell is going on, moment stopping in time. That's only the beginning of it that I can transfer into words. Friends and family have also found it weird of me that I don't remember certain things from the past as if I don't want to hold onto memories or something but that's not it at all. I literally just can't remember things....

Re: Epilepsy and Memory Loss

I started to have Grand Mal seizures 2 yrs. ago. I have most symptoms of GM seizures. Stop breathing, blue face and lips, tongue bitten, peed pants and weak legs. Also have extreme headaches after sz. and extreme nausea. My boyfriend saw me having the 1st seizure and I was taken to the hospital in an ambulance. Had CT scan, and then was sent home. I also had a MRI, showed nothing, and an EEG, which also showed nothing. 2 months later had 2 seizures 2 hrs. apart. Taken to the hospital again. Had blood drawn, given liquid anti-seizure meds. and then was put on Dilantin 3 x day. The pills 3xday got to be too much. I was having pain in joints, probs with stool, and felt sick all the time. But I think I have something else wrong with my stomach. So the dr. put it down to 2xday. Still too much cuz I am still feeling sick but another dr. gave me an anxiety pill for nausea which seems to help. I lost my job in May of 2011, finally got unemployment and still taking my pills which are now Phenytoin 2xday. I have decided to only take my pills one time a day cuz I hate them and since I have no insurance, I feel what is the point in taking the pills if I can't get the proper help? I have auras and right now have not had a sz yet. Since my sz. I too have noticed my short term memory has gotten bad and I think my long term memory is going too. I could not remember my aunt's last name a few wks ago! My older sister thinks it is cuz of depression, but I know it is from the sz. and my pills. My personality has changed too. I get angry easily and I feel like I am 2 different people I don't know myself anymore. I also think something and then say the wrong word out loud. Like I am thinking I need the paper towels and say toilet paper instead. I feel so alone and can't really talk about my condition with my family cuz they say I am obsessing with my seizures. I just want to know about them and understand them. I am going to try and look into natural supplements to use instead of my meds. I heard potassium helps seizures. Sorry for the long post. I enjoyed reading everyones posts and hope everyone takes it easy. bye.

Re: Epilepsy and Memory Loss

I also have a very noticeable short term memory loss. I went to a neurologist yesterday. He seems to think that it is repairable at least some of it. I am so hopeful.

Re: Epilepsy and Memory Loss

I have had epilepsy since I was six weeks old. Memory loss comes both from certain medications and, not from the epilepsy but from seizures. So the more seizures you have the greater effect it has on memory loss. I have over 100 seizures a day. But also severity of seizures too, It has gotten worse because my epilepsy has goten worse and they increased my medications and changed them around, talk to your doctor about a medication that doesnt can balance your seizures but at the same time does not have the memory loss as a strong side effect. A good doctor or Neurologist or Epileptolgist will have your best interest in mind...not just picking a medication that "shoud control your seizures", they will try to find balance and work hard to do it...

Re: Epilepsy and Memory Loss

Hello all. I had my first seizure ever 2 years ago in my sleep. I was taken to the hospital and had a CT scan which was normal. I was sent home. 2 months later I had 2 seizures 2 hours apart again they happened in my sleep. Went to the hospital again. Was given a liquid anti seizure medication intravenously, had blood drawn, the test was normal and was given a prescription for Dilantin 100 mg 3xaday. The Dilantin 3xaday got to be too much so the dr. said to take it 2xaday.

Months later I was given an EEG, was normal, had an MRI, was normal. No dr. has ever told me why I am having seizures or what kind they are. After doing my own research, I have come to the conclusion that I have Nocturnal Seizure Disorder. This is grand mal tonic clonic seizures that only happens when the person is asleep. All the seizures I have had (15 so far from 2 yrs ago) happen in my sleep. My boyfriend has told me my face and lips turn blue and I stop breathing. I wake up from a seizure confused, knowing something happened but not sure what. I use the bathroom and then it hits me. I had a seizure. After effects of seizure are weak legs, tongue bitten, and peed pants. I always have an extreme headache and extreme nausea as well, which lasts for 2-3 hrs.

Months before I had my first seizure I was always sick all the time like I had the stomach flu 5-10 times a month. But I was always hungry but yet nauseated. I may also have Abdominal Epilepsy. This is a seizure disorder that is not well know for there have only been 36 documented cases. Dr.s don't believe it even exists and it happens mostly with children. It is a gastrological disorder where the person may have a seizure accompanied by stomach nausea and be really tired the next day. Another time they may have a headache. The symptoms of this seizure disorder is exactly how I would feel and still do, but the stomach nausea is much less from 2 years ago for my dr. gave me an anxiety pill that helps with nausea. Like I said I would wake up feeling sick like I had the stomach flu, I would feel really tired and I had a slight headache for the rest of the day and just feel crappy. I suffer from auras as well, and because of my meds or the seizures, I have memory problems as well and anger issues too. I think I also have depression as well. It seems my whole personality has changed from 2 years ago and I don't know myself anymore. One day I could not remember my cousins last name (I remembered it later), or my cell phone number. I had to keep asking my boyfriend what the number was until I wrote it down. Then the next day I look at the number and asked him if that is my cell phone number.

My boyfriend is supportive of me, but I still feel so alone in this world with this condition. My step mom is not very supportive of me and does not believe alot of the stuff I tell her concerning my seizure disorder. She used to suffer from seizures 5 or 6 yrs. ago and I don't think she had any of the probs I have with my seizures and thinks that cuz she didn't, I shouldn't. But now I think she is starting to believe me. My boyfriend told her one day about my memory loss and she looked shocked, not realizing how bad it has gotten. I also told her that my boyfriends dr. told me that yes seizure meds to in fact cause memory loss. Yesterday I called her and told her how bad I feel every morning. I feel like crap, when I wake up, very tired and kind of nauseated all the time. I have slight headaches every day. I know the way I feel has something to do with my seizures or my meds.

Right now I am unemployed, lost my job in June of 2011, so I don't have insurance to always see a dr. I have a dr. appt. in July at a charity hospital and I am going to tell the dr. that I need to have better care done for my seizure disorder. I need to have a Neuropsych exam test done cuz that would show if I have any mental illnesses, memory loss, and it would show how my seizures have affected me. I am going to tell the dr. that I have my seizures in my sleep so the EEG I had done 2 yrs. ago was useless cuz it did not show ANY seizure activity cuz I was awake. Because my seizures only happen during sleep, I need a sleep deprived EEG done.  If the dr. does not help me then I am done with seeing dr.s or taking meds for my seizures. I know this might be a mistake but I am sick of the bullshit I have gone through concerning my seizures and not getting the help I need. In the state I live in I have to be disabled to get any help from the state and according to them, I am not disabled. So maybe this is the only way I can get the help I need, by stopping my meds and having the seizures get worse.

Sorry for talking this way but I have had it. 

Peace

 

Re: Epilepsy and Memory Loss

I feel ya there. I have horrible horrible horrible memory loss due to my seizures. My memory loss was fairly normal until this past june when they performed an EEG on me, and i ended up having a bad seizure.. ever since then my memory has been ****. I haven't really understand how to help myself yet. Other then having people remind me. Good luck

Re: Epilepsy and Memory Loss

I know this may not be much help but I was in a bad wreck myself and lead to my epilepsy, I've had it for nearly a month now and already my memory loss and confusion have been growing by the day, it may well be my meds but I know for a fact I have Epilepsy as had a seziure infront of a whole best buy full of people.. They say it takes a long time to find the right meds as the side effects will be diffrent for everyone, I can't go a day without my meds or I have two to three seziures so I won't wrisk that as I hurt myself alot got the marks to prove it.. My advise is pretty simple thou keep a planner, I use a phone easier for me to work with but use what is best for you. Try not to let the little things stress you, I know remebering new things and even some old things or assosations within them becomes harder to remember, I suppose I'm heading down hill a bit faster then most, but we all have to do what we can.

Steve

 

Re: Epilepsy and Memory Loss

Terri

I have had epilepsy for 50+ years. I know some people will be saying their memory loss is all due to epilepsy. I also know that there are meny things which can cause memory loss. Medications can do it in SOME people. I am talking about medications and not just AED's. My memory comes and goes at times but I atribute that ti age. My memory is just as good now as it was when I was young. Back then I had to write a Thesis. I had moved from one state to another and the state I was in never called anything a thesis. I heard report or essay.I turned in a thesis whit what it was to have been on followed by blank pages. The next day the teacher asked me to stay after class. When I told her my issue she started asking questions.  With each question she asked where I got the information. I gave her the took name page and paragraph. Sfter he had asked the questions I was released and I went about my business, The next day she held up my thesis with a grade on it and passed it around the class so the other students could see all the blank pages. They had questions becasue the grade was a A/B. She explined that she had asked the questions and had written down what I had said and she had written the page used for looking up the information. She then read what she had heard. In many ways I still have a good memory but now and then I might forget something but later it comes back.

Think about medications I was taking phenobarb and dilantin at age 12. The first time I took dilantin I had something wierd happen. My equilerium go wacky. I was taken off it for a week. After starting it again I had no problems. I was on dilantin for over 30 years. I started losing my equilimruim. I didn't know why but it came and went for days. I started thinking and it hit me. The feelings and things happening were exactly what was going on when I was 12. Doc and I lowered the doasge and I set up an appointment at the hospital in Lubbuck. During the visit they ran blood tests. My problem was deffinately the dilantin. After being on it for 30+years I it was toxic levels. They changes my medications. I still have seizures but with the new medications that are created for types of seizures they do not drug the entire central nervious system down so they should help stop seizures and you can still do things better and not walk around like a zombie.

As I stated earlier there anr many things that cause memory loss medications are some of them and those can even be OTC drugs. The older you get the more loss there is but it is there. I can still remember things that happened when I was a kid. Like being hollered at when a storm was there. Hey it was raining and it was only on 1 side of the streetno rain on the side I was on. there are many things I remember that after saying something when Mm was here it triggered her memory. She is now 83 but she had not thought of many of those things but they are trapped in our brains. All we have to do is trigger them and there are doctors working on that as we post.

Re: Epilepsy and Memory Loss

I was diagnosed with epilepsy in December (I'm in my 50's).  I was severely allergic to Keppra and Oxcarbazepine and am now on Phenytoin 4 x daily.  I am also on Lexapro, an anti-depressant - something I never experienced prior these  medications.  And my memory is shot, starting since the seizures.  I'm light-headed all the time, get occasional dizziness and must write everything down. in order to remember.  I am relieved to know that I am not alone.

Re: Epilepsy and Memory Loss

Ok,being a guy I feel a little out of place. But I can relate. I have had epilepsy since 1968 and have been taking meds since I was 4 years old. Now I had the memory issues all through school but never realized why. With a combo of alot of medications and of course (just learned about 2years ago) I have Mesial Temporal Sclerosis. The meds were a huge problem. I did have my surgery one year ago and have been seizure free since, but my memory is just like most of you wich I notice more obviously with dropping med a bit. Wich does show all of use what those meds can do to our memory. One thing that affects us is the more seizures we have can cause more seizures in future. So what I'm getting at is please tell your epileptologists in wich helped me so much more. But neurologists should also help you look into something different if possible. I'm not a professional but have experienced so much over too many years to not help someone.

Live your life day by day
Sonny

Re: Epilepsy and Memory Loss

I'm not sure if this forum is still going as I see there is only one comment after 2006.  However, I wanted to add something.  I have had epilepsy for 13 years (I am 58) and it is not well controlled.  I have only had 3 grand mals but have 'weird feelings' as I am waking every few weeks.  I bit my cheek quite badly during the last one.  My main problem is my memory.  It really affects me by not remembering the content of meetings at work even if it is just after a few days and also my memory of distant events that I should remember!  eg being taken to the Sandy Lane Hotel in Barbados for a few days - now anybody should remember that!  My family have got to the stage where they say 'do you remember? - oh no you wouldn't'  I have the other symptoms you describe - knowing I know someone but not their name or the context I know them in.  I have this awful fear of having early onset dementia and would much prefer it to be the result of the epilepsy!  I am having memory tests from the medic this week - but does it sound like the result of epilepsy to you guys?

Tricia

Re: Epilepsy and Memory Loss

I have partial complex epilepsy. I don't want to say I have memory loss, because that kind of implies that I know I forgot something. I don't remember things, and I don't even KNOW that I've forgotten it unless something comes up. I write things on my hand, pack things in my phone and carry a padfolio and ipad around everywhere I go. Again, I don't "forget" things... they just vanish in my brain, so I don't even know that I've forgotten something.

Re: Epilepsy and Memory Loss

As a result of a auto accident, I suffered my first focal seizure. Over the next seven years, I experienced frequent seizures. After these episodes ended, I now have only sketchy memories of those years. It feels as if seven years were taken out of my life

Re: Epilepsy and Memory Loss

 July 7th 2009

I can see that this discussion took place mostly during 2006, however I would still like to express myself even if no one reads this.

Firstly, I have temporal lobe epilepsy - grand mal seizures, myoclonic epilepsy and auras. I am taking 325 mg of Lamictal and 500 mg of Keppra.

Secondly, I have serious short term memory problems.

I am 25 and two weeks ago I was fired from my job at a phone/call center. I was a recent hire and had been looking for a job for the past 6 month. I was let go because I couldn't remember the training. It took tons of notes, but that technique didn't work. In a work environment, I simply cannot carry around notes and re-learn the job everyday. My boss and colleagues thought that I didn't pay attention, and had behavioral problems. In reality I was trying my hardest to learn, but nothing would sink in.

I have difficulty remembering faces, past events, people I've met and any technical details relating to literally any task. I am unemployed and cannot even learn how to use a cash register. I cannot find work until I regain my memory and sharpness. To say the least, I'm in a bind.

Also, I've noticed changed in my personality. I anger more easily and I often think that the world has no regard or respect for me. I am almost positive that these changes are due to my medication and memory loss. These thoughts are not a natural part of who I am.

I am worried that I will have to leave CA to live with my parents in WA because at some point I will not be able to support myself. I don't know when I will get better or if I will get better. I'm afraid that I have permanent brain damage. It's hard having memory problems, especially for someone who is so young.

I am seizure free, except for some occasional auras, however, I'd rather have a seizure disorder that is not completely under control than a dysfunctional memory. If anyone has any advice, comments or thoughts, I would appreciate them.

Sincerely.

Emily

Re: Epilepsy and Memory Loss

Hi Tricia,
It sounds like you are having occasional nocturnal seizures - grand mal nocturnal seizures. The cheek bite is a pretty good indicator. Have you talked with your doctor about nocturnal seizures? If you are having them, you might want to adjust your medication level - if you are taking medicine. Breakout seizures every once in a while show that the medication is not doing its job. When you wake up after having bitten your cheek, do you feel really tired?
But congratulations on the limited number of grand mals that you have experienced. Only 3!!! (clearly identified ones). Thats great! I've had so many that I haven't bothered counting.
On the 20th I'm taking a neuropsychological exam. Hope my doctor and I will learn something about my memory from it.
Sincerely,
EmilyP

Re: Epilepsy and Memory Loss

Great forum...at 56 with a lifetime history of epilepsy of unknown orgin I've had my share of Grand-Mals and complex partial....anyway as for memory loss...you bet ya big time.  I did a document for our local Senior Center several weeks ago and passed it out to all the Board Members.  They discussed it today and I knew nothing about creating this document!  I looked at it, they and I were impressed but I have no recall of doing this!!  I came home and checked into my computer and documents and there it is!!

What I am wondering....absent seizures??  This is not a first time occurance.  Forget names a face recognition, individuals continually say hello to me and I haven't a clue who they are!  I am active in the County and do know a lot of people.  "you don't remember" seems to be a upcoming montra from my friends.  At least they are kind and understanding.  My last Grandmal, that I know of, I live alone, was at nite on 11/21/08  I awoke and had eaten the left side of my tongue, literally!  I slept for the next 48 hours.  I have been on Mysoline since I was 20 and additionally topamax for the last 10 years.

There are so many of us with this "disease" that is seldom spoken of or shared with legislative health care issues and changes it's a shame....the cost of medication alone without insurance!!  I have gone to Canada for mine.  Been a licensed Vocational Nurse x 35 years and finally qualified for SSD a couple of months ago.  I have 3 fused cervical discs from seizures and another possible surgery needed. 

Anyway thank you for letting me share....I will forget I did this within the next several days!! lol lol lol

Re: Epilepsy and Memory Loss

I was on google and came across this site. The last couple of weeks have been very odd for me. Two weeks ago today I was on my way to work. I pulled my car over and called my little brother to ask him to come and get me. He made it to me and drove us home. According to him I had about a 3min Gran Mal in the car. I woke up the following day with the most awful headache. That is something Im used to. What I am not used to is not being able to remember the last 2-3 months of my life. My taste buds were like they had been reset, along with some other things that gave me pause. I have been on medication for this condition since 06', but I dont ever recall losing this much of my memory. My girlfriend a few years back told me I was forgetting a day or so here and there after a seizure, but never this much time. I made an appointment and asked my doctor what was going on, to which he replied, oh you may suffer from memory loss because of your condition, and he left it at that. I have had the same odd feeling on the left side of my head since my last seizure and things just seem very strange. I cant put a face with most of the names on my contact list in my phone; I cant even really remember how to get to work...I am very thankful that I found this site because it makes this somewhat easier to handle knowing there are others who are dealing with the same thing I am right now. My only question is this, for any and all who have suffered from memory loss, have you gotten any of those memories back or are they lost forever?

Re: Epilepsy and Memory Loss

I had my first grand mal seizure when I was 16 and was out of it for two days in the hospital. I woke up not knowing what was going on, and completely freaking out. Afterwards, I realized that I had hardly any childhood memories left. My grades somewhat slipped in school. I somewhat get flashes of memories here and there over time. I guess you could say somewhat "slowly building them back up". I've had people somewhat mock me for this but what you need to remember is #1: It's not your fault,#2: It's not an unusual occurrence and #3: Literally everybody that has epilepsy generally has some sort of memory loss issues. My advice is read through some more stories of people on this website and get yourself a little more acquainted with what all is going on and what others have experienced. Your not alone in this and this website has more than helped me.

Re: Epilepsy and Memory Loss

I had a tough time in J.C.  It took 10 years to get an AA degree in General Ed.  I have a learning disability, compounded by the Dilantin I take.  (I'm also taking 3 other AEDs.) My memory is so bad I can't finsih college.  I have no idea what type of job I could ever get in the outside world with no memory of my past.  I dont' even remember the Rolling Stones concert I went to about 30 years ago.  Okay, that was a long time ago, but come on...This was my favorite rock group at the time. 

I am afraid my family will decide to put me in a nursing home so they won't need to worry about me.  Out of sight, out of mind.  I'm certain I'll get early dementia because I was too stupid and vain to wear a helmet until 2 years ago.  I'd fall on concrete, hit my head, break my nose, or whatever.  I'd usually leave a pile of blood wherever I was, but I refused to get that helmet.  Now, it's probably not going to make much of a difference.  I don't remember a lot of things anymore.  

My learning disability was diagnosed after my neuro psychologic test.  It's pretty bad, and I feel totally stupid.  I have more than 3 seizures/month (what's required to be on disability) and can't seem to get down to only one month without a seizure.  I'd like to know what the outside world feels like again.  Seriously, I have no idea what it is like to work in an office or do anything that could help me with my career....as what?  I can't even figure out what to do, since everything seems to take a B.S. degree to get anything anymore.  

Have any of you felt like you're going to lose your independence because a family member might put you away in a nursing home?  I remember my Grandma!  Almost no one visited her!  It broke my heart...I wanted to visit her more often, but couldn't because of this stupid epilepsy.  It's going to happen to me.  I'd rather die young than live like that.  I've seen too many nursing homes to know that this is common for people with dementia...most often Alzheimer's.  It's frightening!  At least I'm only losing long-term memory.  I've got to give my medical power of attorney to someone I can trust...and my family isn't it!  

Does anyone else not trust their families because of memory loss?  I need to turn over my medical power-of attorney, so no one can do that to me.  I've also peed in bed.  The first time, my boyfriend was furious with me!  I had such a horrible headache, I couldn't tell what was happening.  I felt that bad for over 24 hours, then I felt better.  He understands now, but of course, it's an imposition, which is why I wear the pads.  I've only needed it 6 times; but that's 6 too many!  I also make sure to try to pee as often as possible, in case I have a seizure during the day.  It happens, part of having a seizure with a full bladder.  It sure helps to wake up at 2:00 AM, get to the bathroom, and slip back into bed.  No problem getting back to sleep, 'cause I've made it a habit.  

 

 

Re: Epilepsy and Memory Loss

I am new to the forum, but I was reading a lot of the posts.
I am 20 years old have been having seizures for 7 years now. But abotu 3 weeks ago I had 3 seizures in a span of 24 hours and the last one I had was really bad. When I came out of it I did not know where I was or who I was with. I lost the past 2 years of my life pretty much. It is slowly coming back but my first 2 years in college I do not remember and ever since I have had trouble remembering little things. I have also not been able to get on a proper sleep schedule. I end up laying in my bed wide awake for hours on end just not able to fall asleep.
I have a hard time retaining stuff now, like peoples names which I was really good at remembering names of people even if i just met them.
Because of this I recently had to sign a power of attourney to my father. I am a little hesitant on it because I no longer have control of everything and I am a person who wants to be in control of my surroundings.
I have been pulled out of school for the rest of the semester and my life is pretty much on hold...

Re: Epilepsy and Memory Loss

Don't feel bad. I have the same problem as you with memory, speech, analytic and word retrieval problems. I thought I was going to have dementia too. I have complex partial appx 1 to 2 times a day without control for 14 years now. After 10 years of living with this, I began to study hard again just to kill time. As time flew, I realized my memory and cognitive skills improved dramatically and surely. The progress is slow and short term memory still requires more attention. What I'm trying to tell you is that studying and using my brain more helps me slowly but surely. Maybe if you read and study, your cognitive skill may be less worrisome too. I hope this may help you to not give up on yourself. It really helps!

Re: Epilepsy and Memory Loss

I am 50 next year and I have a similar situation.  I use to pride myself on my memory and for the last 9 years its been the pits.  Now I am afraid I will forget my way home.  Thankgod for navigation systems. 

Re: Epilepsy and Memory Loss

Emily - how did your neuropsychological exam go?  was it worth doing? 

Re: Epilepsy and Memory Loss

Hey Emily,

I wanted to write you to share my experiences. They sound very similar to yours! I am 21 and had my first grand mal seizure a year and a half ago (I think - I believe I had a few partials before that) and I was put on 500mg of Keppra.  I noticed I was all of a sudden angry, impatient and just sad.  Most often nothing triggered the feelings...it just came out of nowhere and it was very frustrating with no cause for why I felt this way! I felt alone and that no one could understand how I was.   I would wake up crying and have no idea why.  I was determined to get to the bottom of it.  My doctor was convinced that seizures didn't cause the feelings so he told me to wait it out a little longer and see if anything changed.  It didn't - go figure - so I went back the next time I was home from college and he decided to take me off the Keppra and and try me on Lamictal.  I see that you do already take it, but after Keppra was out of my system, I've felt SOOOO much better!! The anger and sadness is almost gone! It comes in random waves but rarely.  I TRULY believe the Keppra was the cause for my feelings!! I mean, it makes sense since it didn't happen before the seizure and after I was weaned off, things changed.  Maybe suggest this to your doctor...I don't know if u need the keppra but its worth a shot!

I do also have memory loss - mostly long term - friends and family will bring up past memories and I have a hard time remembering many of them - its very sad and embarassing! Some short term for me but not like the long term.  Know you're not alone!  Its so hard because we are young and its scary to think if itll only get worse. 

 Hang in there!!! I'd love to hear what you think...or anyone else who has had a similar situation???

- Lex

Re: Epilepsy and Memory Loss

Your story almost exactly matches mine. Same age, same meds. It's so nice to hear that in not alone. I dont think many people understand what we go through. And at such a young age.

Rebecca

Re: Epilepsy and Memory Loss

Hi Emily.. I'm not sure if This forum is still going but I will post anyways. I am 26 y.o. I was diagnosed w petit mal and ocassional grand mal seizure disorder. I have a horrible long term and short term memory just like yourself. I have trouble remembering words in the middle of a sentence. I really wanted to be a RN but I was scared I wouldn't be able to remember all the information. I went to beauty school instead and I'm having trouble rembering stuff unless I'm doing it daily w my notes. My boyfriend thought I was just doing it for attention but after four years realized I live day by day bc I can't rem what happened yesterday which scares me bc I'm only 26. I have to ask my friends and fam about events from the past. Certain things may trigger but hardly ever. I try to play scrabble games to keep my brain thinking a little instead of stairing at the tv all day. I'm about to go look for a job soon and I'm very scared I won't get hired bc I won't rem things. Well thanks for listening

Re: Epilepsy and Memory Loss

Thank you for your post. You are probably the first person i've found to have exactly my same symptoms. I had my first seizure (grand mal) last October. So, i'm still adjusting to the news of my diagnosis. I get very angry easily, think one word and say another, and my short term memory is almost gone. I literally cannot remember what I even wore or ate just yesterday. I'm also on dilantin (phenytoin) after a side effect disaster with keppra. I have no aura, though. So, i have absolutely no clue when i'm about to seize. And, my family does NOT understand me or this condition. They say it's "in the water". So, I don't really have anyone who understands. I jerk and have tremors almost every day and just started having weakness in my right hand sometimes. Docs all say the same thing- "we don't know". My CT, MRI, and EEG were all normal, as well. So, it looks like i'm just gonna have to live with it. I lost my job shortly after my first seizure and now have no insurance to get the care and tests I really need. Not saying this for pity. Just glad someone knows what this is like. Hopefully, the memory will not get any worse. 

 Do you have any jerking or tremors on a regular basis?

 

 

 

 

 

 

 

 

 

 

I am suffering from horrible

I am suffering from horrible memory loss ever since the debilitating sz I experienced on the 27th. I can't remember friends' names, I can't find the names for things, and I went without meds for so long I'm afraid to tell anyone. Long story short, I had a 30 or 45 minute Tonic/Clonic and have not been myself since. I'm afraid I may have caused permanant damage to my brain, and going back to the neuro is even scarier than when I was a kid.
I have experienced some of the weirdest emotions ever, and can say without a doubt it wasn't meds. I was without meds for 8 or 9 years...(don't suggest that, either). I am tryimg to put my life back in order, and am hoping to keep it from happening to anyone else.
Still hanging in there,
Susan

Re: I am suffering from horrible

To aquila 316 re: memory loss: Thank you for responding so soon about memory loss. I'm so sorry to hear of your debilitating experience. I've never had that bad of seizures...just the blacking out or absence seizures and they have been mostly controlled w/ my med. However, I still have the ongoing memory problems. I will recognize people, but can't remember how I know them or their names. A word or name will ring a bell, but I can't remember anything else about it. I was only diagnosed with Epilepsy and put on meds within the last 2 years.

It sounds like you should talk to your doctor. Were you alone when you had the sz 9/27? How long were you off your meds? Forgot to take them?
I care. Terri N.

Re: Re: I am suffering from horrible

it sounds like we have some of the same symptoms, so i wanted to write you. i am 22 and have had epilepsy for about 3 yrs now. i have grand mal seizures, but also have had other types. not sure exactly what kind. i guess absence seizures. i can see, but can't reply and everything sounds very "mutated" as i call it. or like i'm underwater.
anyway, i just made 7 months (finally) with no seizures. the last one i had was on march 15, andi was just falling asleep when it happened. bit the tongue, the whole 9 yards you know. they suck and i am so glad things are sort of looking up for a change.
but i'm with you on the memory loss. my husband gets aggrivated at times because i TOTALLy will for get stuff, like water boilong, and important stuff that you would normally realize. i feel like a child. iu have to be reminded so much. is this from my med/ or the seizures. i know i used to be forgetful, but i don't remember if it was this bad. it gets frustrating when i'm talking about an object, and i'm looking right at it, but i can't figure out what it's called. sometimes it might take like 5 min before i can think of what the word is. like the refrigerator, dryer, phone, dog. just anything. i've gotten to where i have told all my friends and my family that i have a problem with trying to explain myself so know it isn't so bad. i would get so embarrased and upset. now it's just normal. but i still hate it. i mean when i have kids will i forget about them, forget theirenames??? i'm scared. and i also haven't been able to work or drive in forever. i'm scared, and i think once i'm behind the wheel, i'm so concerned with "what if" i start stressing myself and then i get this very weird sensation in my head. too hard to explain to others. its like warm, and magnified, i don't know. it's just weird. and its got to be from my epilepsy or the meds because it's never done it before.

Re: I am suffering from horrible

i have epilepsy im 43 m parents were told that when i was 3 up until 7 years ago i had sz all the time . i have been sz free now for 7 years i take my meds the same time every day and i watch my sugar level my doc says that when a woman with epilepsy has her period her sugar levels drop which makes her medicine levels drop ,since i started doin this i have been able to drive again

Re: Epilepsy and Memory Loss

I have found Xango has helped a lot with my memory and energy level. It is an all natural health supplement. It is made from the mangosteen fruit. Just thought some of you would want to know.

Re: Re: Epilepsy and Memory Loss

Thank you so much for replying to my problem! It's ironic though, that you talked about Xango...I take Zija which is Xango's direct competition. It's made from the Moringa plant totally. I've taken it for over 2 years. Xango really seemed to help your memory and energy level though...that's interesting. Terri

Re: Epilepsy and Memory Loss

HI TERRI I WAS JUST READING YOUR COMENT ON ON XANGO REALLY HELPED YOUR MEMORY ARE THESE HERBS WHERE WOULD YOU FIND THEM CAUSE I HAVE TO WRITE DOWN EVERYTHING AND MY FAMILY TELLS ME THINGS I THINK NEVER HAPPENED OR DID AND NEVER DID LIKE EVERYDAY.

Mangosteen? Really, Afraid

Mangosteen? Really, Afraid to Sleep? I didn't know that. I'm in the Philippines and I just bought that fruit today 'coz I didn't know what it was and wanted to try it. Then, I read your post. Wow...talk about irony! :-)

Seizuregirl

"Life is what you make of it"

Good luck Seizuregirl. Let

Good luck Seizuregirl. Let me know how the xango or mangosteen fruit works out for you.

Re: Good luck Seizuregirl. Let

i get weird feelings sometimes, I don't know if i'm just paranoid about having a sz or what. sometimes I feel like I'm not there or something. as for the memory loss I don't forget friends names...yet. I've only been on tegretol xr for about 2 years now. I do forget names of objects, it's like i know what it is i just can't get the word. My sis has the same prob., she has E too.

Re: Re: Good luck Seizuregirl. Let

Hi Equine_luver: Guess weird feelings of all sorts are part of E. I'm seeing all kinds of things here. Again, the memory loss is my biggest problem. I've been told not to worry about it and just to try to live my life healthfully and let go of stress...turn it over to God.
Are you into horses? I was a barrel racer for 28 years. Live in Washington. How 'bout you?
Terri N.

Re: Re: Re: Good luck Seizuregirl. Let

Lately I've been praying about the weird feelings and the past two days I hae felt awesome, no freaking out or anything! thats exciting!
yeah we have 11 horses, and we have 2 here for training. Since I can't work or go to college (i'm 18) i've been giving a friend riding lessons and training their horses. (technically I'm not supposed to be riding, but really I'm less likely to have a sz on a horse, I love riding) I woud like to get into barrel racing, just need to get the right horse. Half of them are miniatures. we've had horses since i was 10 so almost 9 years. we live in Indiana.
Nichole

Re: Re: Re: Re: Good luck Seizuregirl. Let

Just recently been diagnosed after the EEG showed seizure activity. Simple partial is what they're calling it. I was having the "aura" and deja vous type and wasn't sure if I was imagining it until they started getting stronger and more frequent. I'm on anti seizure meds now and my neurologist has booked an MRI hoping he can pin point the area and do surgery. I'm not as enthusiastic about the surgery as he is!My memory wasn't great to start with and now I feel like an idiot most the time and get words all mixed up.Family had a good laugh when I told them I was going out to "phone" the horses last night. Glad I have my horses I think when people are dealing with stress animals are the best therapy.

Re: Epilepsy and Memory Loss

Hi Terri,
I understand what you're talking about... I am 25 years old and had my first seizures at age 13 (i had the blankout seizures that you mention aswell as the full on seizures). Since then my memory has pretty much packed up and gone on vacation. I have virtually no memory prior to the age of 13 and what I can remember seems to be made up memories of things people have told me. I don't think it has got worse over the years but I'm definitely more aware of it now and at times it is very embarrassing to have to ask 3 or 4 times something that you have already been told. Atleast a few times a month I get this incredibly strange feeling over me that is too strange to describe - more often than not I can associate this with stress/lack of sleep, so that is the only thing that I can recommend to help keep this all at arms length; or maybe see what is happening in your life at the time to find 'your cause'. I have tried to find bits and pieces to read about it, but there doesn't seem to be much definitive stuff out there, and I think this is because everyone is different.
I know that prior to Epilepsy I had an over the top fabulous memory and was in the top 1% of my age group in the country academically. After I got epilepsy I could hardly remember anything in exams anymore and my schooling declined steadily over the years.
I hope knowing that others feel the same may have helped - it can sometimes be very lonely.

Re: Epilepsy and Memory Loss

Helpful info

Re: Re: Epilepsy and Memory Loss

Hi Jennie: T/y for responding to my message. It must have really been hard losing memory at such a young age, while still in school! I'm 59 and very active, but I've decided that if this is what I have to deal with as I get older, I will, and keep doing everything I want to do. So many of my friends are losing abilities with their older bodies, and so we always kid...we'll use my body and your brain, and between us, we have one good whole person!
Like you said, I think stress/lack of sleep can have alot to do with the weird feelings...and think about what's going on right now. I had an argument with my husband one day, and then had a seizure a couple of days later. Had been feeling weird and then felt weird and sleepy after...totally the opposite of how I'd been feeling before the disagreement. Looking back, I'm sure the argument was the cause.
You're right...it does help knowing someone else out there feels the same way. Please keep in touch!
Hugs and blessings...Terri N.
Ps: We're having the funeral today for my step-dad. This has been a very hard time to go thru...but I'm doing good! Praise the Lord!

Pages