Memory Loss related to Epilepsy

Has anyone experienced severe memory loss related to epilepsy. I developed severe epilepsy about 7 years ago - age 56. I was having 3/4 major seizures per week as well as many more minor daily incidents. It took until 2 years ago to be brought under virtually complete control but I am left with very severe memory loss of a huge part of my life.

It is my long-term memory of events and places that is mainly affected. I still remember most people, language, learning etc but I have forgotten my life with my parents, my son's childhood, holidays, places I have visited, events big and small, films, books and much, much more that is difficult to define. My short-term memory is also nothing like as good as it should be.

If I were to be asked, I would honestly say that, given a choice, I would keep the seizures and have my memory back!!! I feel as if I don't really know who I am anymore - as if I have lost a big part of myself - if that makes sense.

Has anyone experienced anything similar.

55 Replies

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  • I am so sorry to hear of your memory loss but I think it may have been the seizures that caused this so it is best that you have your seizures under control. I think memory loss varies from person to person. My son's memory is patchy; particularly regarding past events and people. After a seizure his memory is particularly bad, both short and long, and you are never quite sure to what extent he will be affected. Over the next few months it tends to improve again to some extent. Short term memory is always a problem; even remembering to take his medication. Part of the problem for him (and for me) is never knowing what he will remember and what he wont!

  • Sorry Chimbellina - I pressed "post" before I had finished writing!

    I'm sorry to here about your son's problems - it must be very difficult for both of you. How long has he been epileptic and what age group is he in? Does he have frequent seizures or are they reasonably under control.?

  • Hi

    my son has the same problem, i feel his attention span has changed since he was diagnosed with epilepsy, he is on keppra, does this drug cause this or is it related to the seizures as he was never like this before he took seizures.

  • Thanks for the comment Chimbellina. It is quite definitely the seizures that have caused my memory loss. Since they have been under control, I haven't suffered any further long term losses and any newly created memories of that kind are now stored and I can recall them normally. I still have the short term problems all the time. I have been told by my docs that the long term part will never come back as the memory "bank" has basically been destroyed - if I have understood that explanation correctly!! My husband finds both kind very difficult to deal with as he never knows what I remember from our past and also what I will remember about things he has said as recently as an hour ago!!! Very distressing for him .

  • Hello again... My son has had migraines since the age of 7 and started getting de ja vous brief absences which made him feel ill at the age of 11. Tonic/clonic's started at 13 along with myoclonic activity in his lighter sleep cycle in the early hours. The myoclonic activity is not under control. The severity of the big seizures is less on medication but he still has these every 2 - 4 months. The impact on his education has been devastating. 2 years ago he got Chronic Fatigue following flu' from which he has never fully recovered and consequently has left school with no qualifications including giving up a music scholarship. It is an uphill battle he faces towards recovery.

  • Chimbelina, this is so sad to hear.

    I also have a large amount of seizure-related memory loss and have very few memories of my teenage years, which is when I was suffering from seizures regularly. I don't remember a lot from before this time, either, but I don't know if this is normal for childhood or also because of the epilepsy. Even now, when my seizures have been controlled for 5 years I can sit down to watch a film and even watch most of it being convinced that I've never seen it before and then something will happen that I do remember and I'll realise I have did fact see it before my seizures were controlled!

    However, my memory loss has never severely affected me academically and I am currently in the latter stages of a PhD program. I really hope that your son recovers as it would be awful for the epilepsy to ruin his life in that respect as well. I wish you all the best of luck, but unfortunately, I don't think there is anything we can do to get back our lost memories. It is just part of the brain trauma that goes hand-in-hand with epilepsy.

  • Thanks for your comments and encouragement. At this stage it is difficult to separate the effects of chronic fatigue and epilepsy. To feel ill every day for 2 years is difficult to overcome and such a waste of such a young talented life. It is so encouraging to hear you are in the latter stages of a Phd... congratulations on coming so far. What are you studying? My son's first academic goal is to gain 120 credits with the Open University over the next 2 -3 years which would hopefully be enough to gain him entrance to a traditional university if he is sufficiently recovered by then. He is also trying to keep his musical education alive but only just. Fortunately his memory doesn't yet affect his ability to learn music and the words to songs. Our aim is to just keep all this ticking over, even though he is often too ill to practice and I often have to read his books too him. At least then if his health returns all is not lost and it will be easier to pick up the pieces.

    Those who are suffering ill health gain so much from hearing hopeful stories such as yours; otherwise they can feel isolated and despair of ever recovering. We have to work hard at keeping hope alive, helped along with lashing humour; the best medicine!

  • Thank you, Chimbelina. I am studying Statistics applied to disease genetics, so I've had very interesting discussions at conferences with people who are investigating the genetics of epilepsy!

    It sounds like you and your son have a sensible plan. When I first started university, my epilepsy was at its worst and it probably wasn't helped by the late nights and heavy drinking I insisted on taking part in. Luckily, about 6 months after I started, I finally found a drug which controlled my seizures. By this point I was already thinking about moving back home and transferring to a university there after the first year, because you really need the support of a family when you're having regular seizures. I was so lucky that I never had to do this. I've been able to live an independent life since then, although I'd never want to live alone and I still take precautions like informing the lifeguards when I go for a swim!

    I really hope there is good news around the corner for you! I am always reading about new therapies being developed and you never just know what might work for your son!

    All the best :)

  • Hi Amy - it is so "good" to hear someone speak about the kind of memory loss that I have - I think you will know what I mean by "good"!! Until I read your first post on this thread, I had never met anybody with exactly this. No-one, except another sufferer can really understand what you mean when you try to explain - I don't blame them as it is so weird but it makes it even more difficult to live with. I have exactly the same problem as you do with films and TV programmes - often it needs my husband to tel me that I have already seen them as I have absolutely no memory of them. The only "advantage" of this is that you don't get fed up of what other people call "repeats"!!!! Like Chimbellina's son and yourself, I have no problem with "learning" - I can study and retain it, I haven't forgotten any of the educational aspects of my past (I'm very much older than you at age 64!). I remember words of songs from many years ago, I can remember names of actors etc whilst not having a clue "who" they are or what kind of films they have been in. I can tell you the whole itinerary of a holiday we had to America 9 years ago - step by step but have no idea what anywhere looked like or what I actually did there!! I had to ask my husband recently if I had ever been to London!!!

    Like Chimbellina, Amy, I am encouraged by the fact that you have made such a success of the rest of your life - it does you extreme credit and makes me feel as if it isn't "all over" so to speak. I understand what you mean about not wanting to live alone when you have epilepsy. It is very frightening, I can promise you! I lived alone for 4 of the 5 years that it took for the doctors to bring my seizures under control. I was constantly being found unconscious on the floor of my house - I was having massive seizures that could leave me unconscious for up to 8 hours. I had a warning alarm that set off signals if I went abruptly from upright to horizontal and brought help to the house - that helped a bit but it was still pretty awful.

    I am also very impressed with the efforts that both Chimbellina and her son are making to deal with his double problems - it can be so easy just to feel like giving up sometimes. I do so hope that they can find some medication that will give our son greater seizure control - the Chronic Fatigue Syndrome, I believe, can sometimes disappear as suddenly as it arrived - I have two friends who, happily, had that experience.

    Amy, I am also interested in your remarks about the genetics of epilepsy. It turns out that my grandfather had what, in those days, was called Grand Mal seizures - tonic/clonic I think it is called now. I have also been told that my father was thought to have suffered from Petit Mal seizures - I didn't know about any of this before I developed the disease myself.

    sorry - have gone on rather a long time - will finish now!!

  • I don't know very much about the genetics, but I think it is likely that most people who have it and don't know the cause (eg. brain trauma) are at least made more susceptible to to it through their genetics. I myself had a maternal great-grandmother with epilepsy, although I don't know what kind at all. My mother also suffered 2 (I think) seizures as a youth and interestingly, I noticed in today's e-mail newsletter, there was a mention of a possible genetic link between epilepsy and migraines, which one of my sisters suffers from.

    My fiance's sister also has epilepsy (very similar to mine, as far as I can tell), and although she is the only one in their family, he did have a single seizure once, when he had to have some blood taken.

    If I have any opportunities to work on a team researching epilepsy in the future, that is something I'd really like to do! At the moment, though, although we focus on breast cancer, my group is trying to develop methods which might be able to analyse data for a large number of diseases, including epilepsy, so you never know, I find something useful!

    :)

  • like yourself my epilepsy started 'out of the blue' and i was having and indeed an still having several fits every week. my memory loss is very similar to yours-i havelost chunks of my earlier life, i remember faces but i don't know where from, i don't remember names, i can't remember things that happened last week let alone 20 years ago!

    i've just learned to live with it now-there is nothing i can do about it unfortunately. once it's gone-it's gone ;(

  • Hi Berta - although I'm sorry you have the memory loss, it is also comforting to speak to someone who understands how it feels to have lost large chunks of your past life. Most people, quite naturally, can't really do any more than "sympathise". Like you, I had the severe short term memory loss for as long as I as I continued to have the main seizures but it appears to be vastly improved (although still not wonderful!!) since my seiziures were, in the main, brought under control. so perhaps if you could get the medication to do that for you, at least the shorter term problems would decrease. Also like you, I have had to accept that with the longer term memory, what's gone is gone but even my husband finds that difficult to deal with as HE has obviously lost a large part of our 40 year marriage as he can't share lots of it with me any more.

    How far back does your memory loss go?

  • Can anyone already prescribed the AED Lamotrigine tell me what side effects to expect

    as I am about to be prescribed this drug. I am aware that one of the symptoms is a skin rash. Is it a full body rash, facial rash, etc? I am also worried to read that thoughts of committing suicide are also common - has anyone experienced this?

    I have recently been diagnosed with Epilespsy and am devastated about it. I hate the

    idea of having to take tablets every day that seem to have the ability to change my personality from having always thought positively to thinking negatively.

  • Hi there Lucie01 - I'm sorry but I am home late tonight and am very tired but will reply to you asap. Please don't be frightened of all the "negative" things - they aren't nearly as numerous or common as you can often believe in the beginning. I have been taking a high doseage of Lamotrigine for over 3 years now (and it works!!) so I can speak to you with quite a lot of experience behind me!!

    Till as soon as I can.

    Margaret - Ecossaise

  • Hi again Lucie - life has been a bit chaotic over the last 4 days so this is the first time I've been able to get back to sending your reply. As I said already, I have pretty severe epilepsy - I'm 64 and it came on out of the blue about 7 years ago. I was on my own at the time and I was terrified about it all -so your feelings of fear are quite normal. In my personal experience, if every "possible" side effect of every drug were to be worried about, none of us would ever let any drug in to our systems at all! I don't mean that there are never side effects of medication - but there are far more people who have only good results from their drugs than those who have nay bad one - and I promise I am NOT employed by a drug company!!

    Seriously, I have been taking a pretty high dose of Lamotrigine - at a level of 400mg a day for 4 years now (built up slowly from a low dosage to begin with) and I have hardly any side effects at all. The biggest and best effect is a totally positive one - it has brought my very frequent and serious seizures completely under control. The only slight side effect I get is that sometimes my balance is not as good as it might be - I'll take that any time instead of 3 or 4 tonic/clonic seizures a week!!! I have NEVER had a single depressive/ suicidal thought due to my drugs. Of course, especially at the beginning, I often felt very depressed by the fact of having developed epilepsy but that is because, at the beginning, you have no idea how it is going to affect your life and the future looks pretty frightening. I found that once they discovered a drug that brought things under control (it did take quite a long time and many different trials), my whole outlook on my "new" life changed and became much more positive.

    I know I have a tendency to ramble on a bit too much so I'll shut up now - but if you want to chat any more, please just write.

    Good luck - it does get better - honest!!

    Cheers

    Margaret

  • I know what it's like to have a memory like a jig saw with bits missing, I am on lamotrigine 600 mgs , I thought a lot of my memory fog was due to lamotrigine, but following a heart attack it was discovered that I had Hughes syndrome and put on warfarin the fog has gone but I still have some problems with long and short term memory, my Neurologist didn't test me for that, anyway just a thought

  • Hi Daisy D - my memory loss has almost certainly been caused by the actual epilepsy - rather than the Lamotrigine - as I had it before the doctors put me on that drug. It definitely got worse and worse the more seizures I had. I don't think I've had the "fog" that you describe - "just" the awful degree of memory loss. When I've discussed it with my consultant, he has said to me that there is really no way back from this particular effect of the seizures, so I've had to learn to accept it.

    I do have a slight cardiac arrhythmia for which I take mild medication but it has been there for over 40 years so, for me, it is not connected. I'm glad that your Warfarin has cured one of your memory type problems - the fog feeling must have been really horrible.

    I hope your cardiac problems don't give you any more bother - epilepsy itself is enough to deal with.

  • hi.

    Im a registered nurse and ive found all the write ups on this site very helpful and beneficial.I have fifteen years nursing experiance .Had a break of eight years bringing up my children.i decided to take a job working as clinical nurse at mental health center,sadley only six month contracttfound it very interesting and a great asset to my registered nurse qualification.

    I know quite a few people who suffer with epilepsy so i am aware of how it affects people in so many different ways.I have a friend who has epilepsy since birth and did not learn to speak until seven years of age who went to special school to help speech he was only having two fits a year until november of last year,he then developed status epilepticous its controlled at the moment.My concern is that there is maybe something that has gone undiagnosed over the years.Only know him six weeks so difficult for me to determin whether this is his normal self wondered if adh or aspergers autism spectrum that he may have other problems that have gone unnoticed.Anyone out there in late fortys that has similar experiance,be nice to hear from you.

  • Sorry Doylec - I personally can't add any answers/comments to your question - it is an aspect of epilepsy of which I have no experience at all - my seizures started for the first time in my late 50s. I'm sure, given time, there will be somebody out there who will come up with some info. Good luck

  • HI

    Thank you for your reply.I am a new member to this community,i hope your Epilepsy is controlled or that you are geting the help you need.Have joined a Epilepsy society that emails me latest updates of research into Epilepsy and medication.

  • I sympathise with you on the memory loss. I was warned before I had my temporal lobe surgery that one of the consequences was going to be poor memory, as the surgeon would have to remove memory cells. Thankfully my friends and work colleagues are sympathetic, and it is very rare to hear the punchline "I have already told you that." I was told by the psychologist not to allow myself to be upset by having forgotten something, as that would only put unnecessary stress on me. A lot of the time thesedays I have reminders on pieces of paper, otherwise there is a good chance I would forget. That even includes reminding myself to pick up a prescription after work. You should see my desk drawer in the office. I would love to read more, but unfortunately I know that I can put a book down and within ten minutes I will probably forget everything I have read. The most annoying part of it is that there are things I would love to forget from my childhood which still haunt me, while something said to me just an hour ago can be forgotten so easily.

  • Hi Talbot - thanks for taking the time to put a post on this thread. As you say, the memory loss aspect of the seizures is pretty rotten! Sometimes you have to find a "funny" side to it though - my friends joke with me saying that they can tell me that they have made me a loan of a couple of thousand pounds and I will have to pay them back because I have no idea whether they are telling the truth or not!!!!! Joking apart, I have a bit of your type of memory problems - I forget current things very easily, from couple of minutes/hours ago to a few weeks/months ago - but my worst problem is my long term loss. I find that VERY hard to deal with as I have lost a large part of the last 30/35 years of my life!! It kind of feels as if I don't really know who I am any more?!! In a way, like you, the strange thing is that I can remember lots of the "bad" bits of my past - the bits I would be quite happy to forget - but can't remember so much of the nice bits .I have to get my husband, son and friends to tell me about these!!! I have been told that this will never change - that the "old" memory has actually been destroyed permanently. I don't know if there is any way to "retrain" my current memory?? Any ideas/suggestions about that??

  • Hi everyone,

    Memory loss is my number one pain with epilepsy (well that and the random levels of unconsciousness along with a muscular workout tat a fitness instructed would be proud of) for me,and this is all subjective of course, for me it's the short term ability to focus and keep on track. I can find myself easily distracted,which means that the task I am doing (message taking or something) hasn't had the time to move itself over the brain bridge as I call it to my my long term memory. It's sitting the short term and like a egg cup nearly full it only takes a small thing to displace the most recent addition and put in something new. Individuals with dementia and Alzheimer's experience similar symptoms albeit via a different problem. The only thing that helps me it's repetition.though boring sometimes it forces my brain to engage the long term area and creates a good connection over the bridge. I am teaching myself to pay the guitar. Slowly building up chords,notes etc. repeating over and over. Not only does this help me visualise better I sometimes find that if I practice a chord shape a couple of times during a task I can remember the task by visualising the chord. Connection made. As i say this is subjective and relates well to my learning style and my understanding of the areas of my memory that fail me but maybe something I have written will give an idea that could work.

  • It was good to read that you have been trying your hand at the guitar. Music was one of those subjects I could see a "before" and "after" with. As a child I started learning the piano. I bought myself a keyboard in the 90s, by now a few years after my surgery, but was surprised to see the struggle I was having with the music. I was struggling to read the notes in just a matter of seconds. In the end I realised that the only way I could make any music was by playing the melody with my right hand, and just adding chords every now and again with the left hand, similar to guitarists. However, it worked, as for a few years I played the organ at church once a month, something I had longed to do before I even grasped how to play a piano!

  • I do feel lucky to have a rather jovial and positive view of my condition. Not flippant but I keep it in its place... I am forced to make my memory work every day. My job requires a lot of concentration which is good. Assisted with the notes and my colleagues of course. Everything finds a way thru, eventually. I hope you still play in some way. Even the simplest of tunes, can still be the most heart felt of melodies.

  • Hi Ghostmemory - I can understand a bit of what you feel - I have the same problem - to a lesser degree! As I have often said, the worst thing for me is the loss of my "past" but the frustration of the short term memory problems is not good. Sometimes i cold scream VERY LOUDLY!!! I know what you mean about the similarity with Alzheimer's/dementia - whether it is an advantage or a DISadvantage that they don't really know what is happening, I don't know!!!! My short term problem is not so much one of concentration, more of "simple" lack of memory!!! I frequently have NO idea what people are referring to when they start talking about something that happened recently - that can be quite embarrassing with people who don't understand my problem!!!!

    One of the things that is helping quite a lot, is being able to talk to people on this forum who actually understand what it all feels like!!!

  • I don't get to come on here often but happy to chat any time my friend. My synapse my not be we'll connected but at least we can be on here ;-)

  • Thank you very much - that's kind of you to think like that. I really appreciate it. Maybe we'll "speak" from time to time". Take care.

  • Hello Folks,

    Brand new to this site but....suffer severe Memory loss due to Epilepsy, and even though as a rule I am very organised about it all as one would have to be, recently I've noticed that what WAS left in the head has/is simply deteriorating/leaving me too.......I am admitting to letting it upset me hugely this week, hence crazy looking for an epileptic place I can talk about it. I live in Ireland, without being disrespectful to the Irish ep' web, it isn't as interactive as this seems to be & at the moment I do need or would like some interaction... How's about this for an introduction!!

    regards,

  • Hi Ancestor,

    Don't feel as if you are unusual by letting it get to you!!! I can deal with it for quite a lot of the time and then, suddenly, it will come over me in a wave and I feel as if I really don't know how to cope any more and frequently start to cry about it! I know what it is like to feel as if you have no one to talk to - no-one who isn't suffering from it can, with the best will in the world, understand what it is all about. I don't know about you, but it is such a weird thing to try to explain that I can see the blank look coming over people's faces when I describe what is happening to me!!! I have severe memory loss due to my seizures (see my first posts at the beginning of this blog) and I know exactly how it feels to have lost(!!??) large parts of your life!!! You don't say exactly what form your memory loss takes - is it your long term memory or your shorter term one - or maybe both. How long have you had epilepsy - how long is it since you started to have the memory loss?

    Please don't hesitate to stay in touch and chat - there are lots of us on the site who will understand how you are feeling and maybe have some useful info to give you.

    Speak soon

    Cheers

    Margaret

  • Hi I have Epilepsy too, I have Tonic Clonic seizures in my sleep, and Complex Partial seizures, not everyday but when they do come they come in clusters, all in all I have at least 40 a month. I have left Temporal Lobe Epilepsy this affects my short term memory, I have had brain surgery twice to try and reduce my seizures but it hasn't helped my Epilepsy is drug resistant. The surgery has affected my short term memory more than what it was before. Not sure if anyone has had any treatment for their short term or long term memory, but there is treatment out there. There is a website called Epilepsy Action they are very good, I'm a member with them. I'm quite lucky with the medical team I have, my GP is an Epilepsy specialist, I also have a neuro-psychologist who does memory tests with me, and the treatment that I will have is learning how to cope and deal with short term memory loss. I also have an Epilepsy Nurse on call when ever I need to speak to her, there is a lot of help out there but unfortunately a lot of GP's don't know a lot about Epilepsy and I find that really sad, especially about some of the stories on here. If I can help in anyway possible, I might be able to give some advice.

    Hope that helps

    Sandy

  • Hi Sandy - Luckily for me, my daytime seizures have responded well to Lamotrigine - it took 5 years to get there but it has now been good for over 2 years. Unfortunately I have recently started to have nocturnal seizures (tonic/clonic) and I notice that my short term memory is deteriorating again!! I have to admit that this is very frustrating and depressing. My memory loss/problems has always upset me even more than the actual epilepsy itself, strange though that may sound. I have always known that the loss of my long term memories was a permanent thing but to find that my short term one is getting worse again is really upsetting. I have never been given any advice about my memory problems even although I have been fortunate enough to have a really wonderful Epilepsy consultant - I finally found a neurologist who was actually a specialist in epilepsy -as you say, Sandy, many neurologists are NOT. Any advice you can give on memory problem would be very welcome.

  • Hi Ecossaise

    Although I am knew to this site - I have just read your Question and feel although you have had a large amount of replies, thought I would give you my own experiences. I am 53 this year and I suffer immensely from short term memory loss. Long term I struggle to recall many events - yet my long term memory is far better than my short term memory.

    I am not into gadgets or PC,s like the young generation and the most important tool I use is a Dairy. I write everything in it. Medications - appointments etc.

    When ever I go out I always have a piece of paper in my back pocket which I call my hit list, with out this I can guarantee I have wasted going out totally as I just forget everything so quickly - even when seeing GP or friends, it takes a long time to remember names and always have a pen and paper by the phone at home so I can write all that is being said.

    This site has really given me a lift in knowing I am not on my own. It takes a lot of courage to disclose the truth to others yet with this site I feel safe totally.

    Best Wishes.

  • Hi Yenwarp,

    Thanks a lot for taking the time ot add to my Blog about memory loss. For me it is the very worst thing about suffering from the rotten illness! Far worse, for me at least, than the seizures themselves - although I'm pretty sure that not everyone will feel the same way.

    My long term memory loss has been there from almost the beginning but my shorter term one has just become much worse fairly recently. Despite being "reasonably" comfortable with the BASICS of the internet (courtesy of the insistence of my 38 year old son!!)I have also started to keep a book with everything I am supposed to be doing and I am trying to MAKE myself write absolutely everything in it the very moment it is mentioned!!!! It is certainly helping a bit - at least it stops the absolute panic and stress from being so bad when I have NO idea what I am supposed to be doing or going etc!!!

    I understand completely how you feel about being able to share things with the others on this site. I really believe that, with the best will in the world, no-one else but another sufferer can truly understand how it all feels. i do think this is particularly the case with the long term memory loss. How do you explain that you have no idea if you have ever been to London - even when your husband tells you that you were there during your honeymoon or that you don't even remember your wedding or your son being born - etc etc etc????!!!

    So please keep on feeling at ease with the sharing that the site allows us all to do - we all support each other.

    Margaret

  • This may be the begining of Alzimere disease,Kindly get MRI done ,in consultation of Neorosergion

  • This may be the begening of Alzemere disease,get MRI DONE OF YOUR BRAIN IN CONSULTATION OF EMINENT NEOROSERGEN

  • rksharmakumar - I have to tell you quite categorically that there is no Altzheimer's risk involved here. I developed this problem purely in conjunction with my epileptic seizures and I do not need also to become anxious about Altzheimer's. I am in constant contact with a very experience neurosurgeon who specializes in epilepsy. This specific type of memory problem is also a well documented symptom related to epileptic seizures - and possibly added to by the particular medications that some of us have to take.

  • Hi I do understand you I'm the same but you will start to remember again but it takes some time but I know how you feel take care eric

  • Hi Eric - thanks for your reply and for your encouragement - it makes a big difference to know that there is support and understanding out there. Unfortunately for me, in my case, I think it is really unlikely that my long term memory will return - it has been over 9 years now since my seizures/memory loss started and I have actually lost huge chunks of my memory of the last 35/40 years of my life. That's often not very easy to deal with but I try hard not to let it get to me all the time. I tend to try to "laugh" about the results of this memory loss when other people are around; things like the fact, as I said before, that I have no memory of my wedding - that can be useful at times!!!!! It's when I'm on my own, thinking about what I've lost - in a sense, I have lost the knowledge of "who I am", if that doesn't sound too weird. That part of it can get to me. Mind you, at least I haven't lost it all so can still smile about lots of things in my life.

    There is another aspect which, perhaps, we don't pay enough attention to and that is what this long term memory loss does to those who are closest to us. My husband, for example, has lost a huge chunk of HIS life, in that he has no one to share his memories of the last 35/40 years with - we have been married for 41 years! This causes him a lot of sadness too.

    Margaret

  • Hi, yes, I know exactly how you feel although my memory is deteriorating all the time. I have lost nearly most of my past memories. I don't remember school, getting married, the birth of my daughter and many more. This saddens me greatly. Im having trouble at the moment remembering

    what happened last week without prompts. When I forget that I've forgotten, its not so bad but I am struggling. Medication won't work for me, I've been ruled out for vns and surgery is unlikely because its bilateral. Seems this is just what I have to live with. I can cope with the seizures although they are not pleasant, its the memory loss that I really am finding hard to cope with. If anyone has any tips or advice, it will be great fully received. Or if anyone can just say they know how it feels, this is a very lonely condition

  • Hi ssjohn,

    I echo the pain you are feeling regarding deteriorating memory and epilepsy. Right now, my seizures seem to be under control, however I've lost treasured chunks of my long-term memory. My short-term memory suffers, as well. I've lost my most treasured memories of my children growing up. I'm having trouble with acceptance. I'm very depressed about this loss. This is the worst part of the illness, in my opinion.

  • ssjohn and Copinghelp - I couldn't agree with you more - as I've said before, the long term memory loss is by far the worst part of my illness. Like both of you, it is the loss of memory of things like the birth of my son, my wedding, my son's first day at school - and a thousand other things - that can still make my spirits plunge - sometimes just out of the blue by some chance remark from someone!! However, I have recently had a bit of a lift for these spirits. My son, who has always been very good and faithful at doing lots of research into my epilepsy, has found some studies which have just been carried out. They are concerned with memory loss in epilepsy and, in particular, into "our" form of it. It is classed as "autobiographical" memory loss and, for the first time ever, I saw an "official" written description of what has happened to me - and to both of you too. I know it hasn't given me back my memories but I suddenly feel much more "normal" and also able to explain to friends etc, what is happening to me. I have never been sure if others think I must be exaggerating etc as it is such a difficult concept to explain to them. I don't know if it is the same for you but I can tell people exactly, in minute detail, what itinerary we followed on a holiday to the States 14 years ago but I have NO idea at all what anywhere looked like or what we did and saw when we were there. Also, after I was first diagnosed with epilepsy, I was on my own and my son took me on a wonderful holiday to Egypt. The only real problem is that, even to this day, I have no memory of him taking me on that holiday! The first I knew about it was when my husband and I booked a holiday to that very same country and my son asked if we were going to the same places he took me to? I looked at him in astonishment as I had no idea what he was talking about; even when my husband and I arrived at the Pyramids, for example, I had absolutely no inkling about having been there before. That, of course, is just a small example of the syndrome; it is much more extensive than that and goes back for about 40/45 years. I've put the links that my son sent me at the end of this - I hope that's allowed on the forum. If you have any difficulty accessing the sites, just drop me a note and I'll give them to you again. I'd be really interested to hear what other sufferers feel about what they read.

    epilepsyresearch.org.uk/res...

    projects.exeter.ac.uk/time/...

    projects.exeter.ac.uk/time/...

  • Ecossaise,

    You couldn't have described "autobiographical" memory loss better. You probably know about "working memory," as well. If I had to trade memory loss types, I'd rather lose "working memory," than the "autobiographical" variety that tell the story of our lives. Now, when my children would like to reminisce about something in their childhood's, they will say..."remember dad whe"... well, you get the picture. A rough trade off for a seizure less life. We're not alone.

  • I had grand mal seizures for at least 7 years. They were controlled 16 years ago, but I still can't remember any details of the first 47 years of my life. I retained my semantic and procedural memories, but lost all my declarative memories.

    Has anyone discovered how memory works and how epilepsy destroys/disrupts it?

  • Hi Copinghelp - I'm sorry, but for some reason, I have only just seen your reply to my reply (2 months ago) - if you know what i mean!!! Sorry if that made me seem uninterested. Nothing could be further from the truth. I can't express how much of a difference it makes to me when I see that I am not alone with this rotten syndrome. Like you, although "non epileptic" people might not believe it, I'd rather have my autobiographical memory back any day of the week rather than anything else at all.- as you say, without it, I no longer know who I really am!!! Thanks for your input.

    BekiP - I haven't done a lot of actual research into the memory aspects of this rotten illness - my son has spent a lot of time doing it - i was so ill for such a long time that I wouldn't have been capable of anything like that anyhow!! I have to be honest and say I am not familiar with your descriptive terminology regarding the various types of memory loss - I just know about losing most of the last 40 years years of my life. Do you think you could help by explaining the different categories that you are describing - I think there are lots of us on the forum who would appreciate it. for most of us, it is a great relief to "speak" to others who actually understand what we go through.

  • Hello ecossaise,

    No apologies necessary for not getting back to me.

    Because the memory loss issue is causing me such distress I sought and found mental health providers trained specifically to work with memory loss issues related to Epilepsy or other brain injuries. These professionals offer emotional support and empathy. I found a counsellor for this through my GP.

    Many may not need one more added appointment for this illness. I need the extra support. Hoping if someone "out there" reads this reply, they won't hesitate to try to find help coping with the memory loss through Epilepsy research or their health care team.

    Best to you all!

  • Thanks for your message - I would love to do something like this as my memory loss causes me a lot of distress - unfortunately for me, I am living abroad at the moment and this service is not available ot me. I am living in France and although my French is reasonable, even if the service operates here, I'd find it difficult to really benefit from sessions in another language.

    I really hope the sessions help you to cope better with the problem - it is a particularly distressing side effect for those of us who suffer it.

    Margaret

  • I'm so sorry you can not access this kind of help right now. I can certainly understand how the language barrier could effect the efficacy of treatment.

    I hope that "just knowing" you are not alone helps you cope with your distress. You have a lot going for you; a loving and loyal husband and son, not to mention good friends. A wonderful support system.

    Right now, my teenagers are bombarding me with the "do you remember when.. ". Or, I attend my kid's sporting games and am unable to reminence with other parents. You understand. It's hard on everyone. My husband and family hate to see me in such distress. I'll keep you posted on counseling, and share, if you wish, some coping skills that help with regulating my emotions regarding this "rotten" memory loss. Mind you, my family is relieved my seizures are under control.

    I wish you well Margaret. Thank you for starting this blog. It is most helpful.

    Sheryl

  • I'm so sorry you can not access this kind of help right now. I can certainly understand how the language barrier could effect the efficacy of treatment.

    I hope that "just knowing" you are not alone helps you cope with your distress. You have a lot going for you; a loving and loyal husband and son, not to mention good friends. A wonderful support system.

    Right now, my teenagers are bombarding me with the "do you remember when.. ". Or, I attend my kid's sporting games and am unable to reminence with other parents. You understand. It's hard on everyone. My husband and family hate to see me in such distress. I'll keep you posted on counseling, and share, if you wish, some coping skills that help with regulating my emotions regarding this "rotten" memory loss. Mind you, my family is relieved my seizures are under control.

    I wish you well Margaret. Thank you for starting this blog. It is most helpful.

    Sheryl

  • Hi Sheryl - thank you for your support in this. I can identify very clearly with your emotions when someone says "remember when"!!!! My husband tries not to say it and, after several years, he is as good as is possible about it, but the phrase obviously cannot be avoided all the time!! Whenever I hear it, in social circumstances, my heart sinks. I also hate the fact that I can often see the distress in my husband's eyes when I have to admit that I can remember nothing at all about something special to him/us as a family.

    I think I have said before (but I can't remember!!!) that, where possible, I have trained myself to try to laugh about things. For example, I always say that there is a huge advantage to this memory loss - it means I am one of the few people around who never has to watch repeats on TV because I can't remember having seen them the first, second or third time round!!!! I know the laughter is a little bit false but it genuinely helps to lighten the feeling of depression and, quite importantly, makes others feel less uncomfortable with something, that with the best will in the world, they really cannot understand. Also, although I don't like to "go on" about my "condition", I find myself wanting/needing to explain to people, who don't already know, that I have this problem due to my epilepsy; it makes me more at ease to know they are not standing there thinking I am a bit weird!! I try to do it quietly and briefly but it is still difficult to talk about it without feeling that I am "attention seeking"!!!

    i would be very happy if you have the time to share some of your counseling experiences, advice with me. I started this particular blog because, for me, this is the worst effect of my epilepsy - worse even than the seizures themselves. Until I started speaking to other sufferers on this forum, I really had no idea that there were other people out there who understood!! Not feeling isolated by it anymore is an incredible help.

    Margaret

  • I have had epilepsy since the age of 18 mths now I'm 59. I also have servere memory loss, I'm unable to remember holidays, events like weddings/parties, anything that went on a while back or that I'm told after a week. I'm on medication of phenytoin & carbamazepine

  • Yes, yes, yes......I'm new to this. I had epilepsy up to 4 years ago. I've been on an antidepressant for just over a year to help my 'memory'. I'm looking for help as the medication takes me down the wrong path. I'm struggling now that I'm coming off these.......I'm rambling. I'm John(42 Glasgow) btw.

  • John - I feel so much sympathy for you. As you will probably have read on my initial post 3 years ago, I have massive memory problems triggered by my epilepsy which started about 10 years ago. My most distressing part is the fact that I have "lost" most of the "events" in the last 40 years of my life - not names, languages (I have lived in France for many years and I can still speak French for example) people as such but I cannot remember "things" that have happened to me. However, my so called short/medium term memory problems have recently been getting worse and worse and this coincides with a return of nocturnal seizures - I had been free of any type of seizure for 4 years. I find all of my memory loss problems very distressing but this recent increase is particularly worrying. I can forget things I was told about a couple of days ago - the difference here is that while I have NO recollection at all of the parts of my "life" that I have lost with the long term version - in other words, even when I am reminded of them or shown photographs, that triggers NO recollection at all; with this shorter term version, usually, when I am reminded of whatever it is, I DO remember it, albeit without some of the detail.

    In terms of your current experiences - are your seizures under control? When mine are NOT being well controlled, my memory problems intensify greatly. This also makes it very difficult for me to concentrate and I can find myself unable to finish sentences, I ge tmy words the wrong way round etc etc etc. When it has been really bad, I have found myself unable to get the words to come out at all despite knowing exactly what i want to say inside my head. It has never been suggested to me that I go onto antidepressants to help these memory problems but a few weeks ago my French neurologists put me on a tiny dose of an antidepressant in the hope of controlling my nocturnal seizures. The idea being that my biggest seizure trigger is stress so perhaps this extra drug will help me to stay calmer?

    Please write and share any other worries and emotions you have over this - I do understand so so much what you are going through.

    Cheers

    Ecossaise ( you'll appreciate this John - I have to admit to you that I come from Edinburgh!!!!!)

  • Hi yes I started with epilepsy at the age of 11 I am now 45 I can't remember my child things I did friends I had at school, some old school friends come up to me and I don't even remember them, someone can tell me there name and 10 minutes later I have forgotten, family time when I was young all gone I hate it. I do take vitamins now b6 zinc magnesium and it is helping me I'm not so foggy.

  • Yes, i have been getting the same things i have had epilepsy since i was 10 and it's horrible i'm doing my GCSE's this year in which i have already done two and failed one of them, this was because of my memory

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