Hi , I am 50 now and had temporal lobe epilepsy since I was about 3 . Lately I have noticed an increase in forgetting things . I have been on meds for most of my life taking tegretol and my so line and was introduced to kepra approx 5 months ago following a seizure. Could this be a side effect of the kepra.
Short term memory loss: Hi , I am 50 now and... - Epilepsy Action
Hi Iainmck I'm 47yrs old now and suffered temporal lobe epilepsy for over 20yrs,now my memor is terrible. I can have something on my mind to get from the kitchen,I'll get to the kitchen and it's gone.I just stand there looking around.its been like this for a few years now.I'm taking Epilim +Tegratol.I'm not sure whether it's normal for an Epileptic to be this way.I also get terrible flushes with body shakes,and have to stop what im doing and hold on to something. I don't even know what's going on with my life anymore.it's left me feeling like an oddball, like I shouldn't have a life anymore.
I've been temporal lobe epileptic since 1985 , and taking Epilim and Lamotrigine . Over the last year or so my short term and now , long term memory have gone haywire . Although I have had tremors for some years after a TIA , they have got almost permanent and much stronger . I was told by the neurologist last week , this was caused by the medication . I never argue , but I can't understand why , if the medications were the reason , does she increase the Lamotrigine from 50mg to 75mg ? Take care .
H daveeb I have had epilepsy since age 50 and have had many changes of medication none of which have worked for me.I find it really scary as the seisures are so erratic from once or twice a year to as many as 6 to ten a year including multiple seisures .I also never know when they are going to happen which is the scariest thing of all and never remember anything about them.My latest medication is lamotrigine which has been increased from 100mg to 450.I am just hoping this might work but have little hope it will after 19 years .However I don't have much increase of memory loss in general though .I don't let it ruin my life but maybe its because I have lots of family to support me .I have grand mall epilepsy by the way .One thing I have found is I have become very emotional lately while discussing it at appointments and that really can be embarrassing.
Hi mike972 ,
Don't be embarrassed about discussing your condition especially at appointments . I used to feel that way but like you I have a good family around me who understand my condition and friends as well . I have temporal lobe epilepsy and suffer mainly from auras . As my son said " don't be afraid to talk about it as it's not your fault you have it " it's just unfortunate the way certain individuals treat it as I have found out more recently .
Yes Iainmck I get what you mean about not being embarrassed about discussing my condition at appointments .Maybe its just me but I feel more at ease talking to a female doctor /epilepsy nurse for some reason.Also under less pressure .I have a male epilepsy specialist who I see usually every 6 months right now and a epilepsy nurse I see more often. I find it astonishing there are still many who treat epileptics like the plague which I find it the case.I notice you say you are on tegretol and that was one of the first I was put on and it made me feel pretty drained most of the time.Then again I know friends who found it pretty good and it actually helped them quite a lot.Like all medication it can affect people in different ways.I hope things get better for you with your latest medication.
Oh and Iainmck I forgot to mention my long term memory is better now than its ever been .Both the good parts and bad. But my short term memory is not so good so it seems it can work both ways.I am in my late 60s by the way.
As you say it is astonishing the way some people treat epilepsy . That's partly caused by people not admitting suffering from it . I learned this through time as my parents were very quiet on the subject as if they found it hard to admit that I suffered from epilepsy. At least now more people are open to discuss their situation although there is still a percentage of people who think that we should not be doing anything at all .
Well I have no experience of my parents thoughts as they were not around from a very early age .But I think parents in general especially in the past either knew little about epilepsy or felt embarrassed talking about it Iainmck .Which is sort of sad really and hard for the sufferer to deal with.Its good your son has more understanding as do many young people who have more knowledge of it .I wish you well
I am also on Keppra and have been since I started having seizures in 2014 (I am 32). I have massively noticed a decline in my memory, I used to pride myself on it but I forget the most simplest of things and then feel really stupid. I cannot count the amount of times I’ve left my keys inside work and been the last one out, or left them at home and got the train in – I had never done that before.
One thing that worries me as I don’t want to upset anyone, is that names are really muddled in my head – so I have to think really really carefully before addressing someone I have known for years, it’s almost like my mind has created a new name for them and I have to hold back!
It’s swings and roundabouts – I’ve been seizure free since taking it, although may have the odd mild deja vu and this seems to be the only side effect.
I have an appointment booked with a neuro-psychologist soon to go through some heavy memory testing to establish whether this is related to my epilepsy/the drugs/or just me getting older! Perhaps ask your Neurologist if you can also be referred for peace of mind?
All the best xxx
I have had epilepsy since 14, now 60 tried all sorts of medication over the years, keppra, elipiIim, tegratol, and now Fycompa, etc, I had a stroke nine years ago, but memory now terrible, forgetting the most basic things, [even using computer games for the memory stabilization] I wonder if it's; old age, effects of medication, the actual effects of the seizures, a long term effect of the stroke, or all of them? It is very embarrassing to forget simple things in front of relatives and friends, then trying to make up excuses for my errors!
I think keppra is what my friend nicknamed the 40 minute pill, he would ask a question, and 40 minutes later I would give him an answer, my memory was crap, although I was running my own family tree [genealogist] business at the time!
Hi adlon57 , seems like you have through the same as myself. I have been on almost the same meds as you but with a few others . My seizures were under control til the one I had last August . Been off work since . My sister is a pharmacist and told me the cause may have been to my body changing as you get that bit older . I'm just hoping this new addition ( kepra) helps in the long run . Hope to get back to work soon . Hope you are keeping well.
I was on Keppra made very tired so had to come off them
Hi. I also have had epilepsy since a child and have been on Epilim and now tegretol for over 20 years. I noticed that my memory and cognition and energy levels were suffering. I also had s lot of peripheral neuropathy in my hands and feet. I've recently discovered that all these symptoms was due to being deficient in B12 folate and probably biotin and b6. Guess what? Carbamazepine and other aed's cause functional deficiency in all these b vitamins after long term use. I was quite shocked to find out that this is well researched yet no one advised me to take supplements to counteract this. Perhaps go to your gp and ask to be tested for folate and B12 to be on the safe side?
That's good to know about the problems tegretol can cause as I to have both trouble with my hands and my left foot . At first I assumed it was just wear and tear as I do a very physical job . Might research this a little further .
good luck, as I understand it your gp has to prescribe B12 if you have neurological symptoms and your folate or B12 are lowish. Not all gps are willing to do this though, mainly due to lack of specialist knowledge. The pernicious anaemia chat room on health unlocked is a good resource to help manage the results/ gp. I am taking a subdermal B12 oil (not prescribed) and I can't tell you what a difference this has made to my brain fog and short term memory. The peripheral neuropathy will take years to heal if at all but at least I know that I'm not going to get worse. It's interesting that the doctors seem to know that aeds give peripheral neuropathy but they don't seem to have learnt about the folate B12 cause?
Just something to add to my comment earlier I do find some kind of exercise and keeping as healthy generally as you can does help in some way .For me it certainly has anyway although by just a little bit.
I have sudep and have been taking keppra for over 5 yrs and I have a terrible memory and have noticed it even more so these last few months. I mentioned it to my doc he thinks I'm depressed so I'm gonna see what my neuro says when I see him in a few months. I'm not sure the memory loss is medication specific imo.
Currently with poor memory I have a headache that simply will not go away and tinnitus which drives me crazy!!
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