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Memory

Many people with epilepsy report they have problems with their memory. In fact, it’s one of the problems people with epilepsy most often seek help for. In these pages we look at how epilepsy can affect memory, how memory works, and give some hints and tips to help you cope with memory problems.

How can epilepsy affect memory?

There are many reasons why someone with epilepsy might have a problem with their memory.

Seizures

Seizures can affect memory because for memory to work properly the brain needs to continuously monitor itself. Epileptic seizures can interfere with this self-monitoring process at any of the following stages:

  • Before a seizure: memories from before a seizure can be lost as the brain does not store them properly
  • During a seizure: loss of consciousness can stop the brain from recording and storing memories
  • After a seizure: confusion can stop memory from working correctly
  • Between seizures: Some people with epilepsy may have unusual electrical activity in the brain between seizures. This can affect attention and memory function

“After one of my seizures, I couldn't remember anything about my life. Then I heard a song from 1996 on the radio - so I started giving hospital staff details about me as if it was that year!”

Damage to the temporal lobe

Research shows that a large portion of memory is located in a part of the brain called the temporal lobe. So if your epilepsy is caused by a tumour or lesion in the temporal lobe, this can also cause memory problems.

Epilepsy medicine

Some epilepsy medicines may affect your memory, because they can slow down the speed at which your brain processes information. On the other hand, epilepsy medicines work to reduce the number of seizures you have. So if you have fewer seizures, this may actually help your memory.

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Wellbeing

The impact of epilepsy on your life might make you feel stressed, anxious or depressed. Seizures or your epilepsy medicine might affect your sleep. All these things can cause memory problems.

How are people with memory problems affected?

Memory problems can affect people in different ways. Some people find that most areas of their memory are affected. Other people have very specific problems that only affect one area of memory, such as remembering people’s names.

“I have difficulty finding everyday words. I always seem to be apologising and saying 'that thingy' or 'doodah' to describe what I mean.”

Memory problems can have a big impact on your life, causing problems in education, work, everyday life and relationships. They might make you feel embarrassed, anxious or depressed. While a memory problem cannot usually be cured, it is possible to adapt, making it easier to cope and live a relatively normal life.

“The memory loss for me is the worst part of my epilepsy. I have learnt to live with the seizures but the memory loss is frightening.”

Memory problems and work

We hear from lots of people with epilepsy who worry about the impact memory problems have on their work. Many of the hints and tips for improving your memory can be used in the workplace. It can help to talk to your employer and your colleagues about any extra support you might need. In the UK, if your employer knows about your epilepsy they must make reasonable adjustments to help you do your job. We have more information about reasonable adjustments in our epilepsy and work section.

“When I went back to work I used a diary all the time and had tick-lists, which my colleagues ended up using as well!”

“Setting aside an hour a week to run through next week’s plans works well for me. It doesn’t so much help store and recall ‘when and where’, but it’s a place to look.”

Memory problems and education

A study of school children with active epilepsy in West Sussex found that over half of the children had problems with memory. If your child has memory problems they may find learning more difficult, and may need extra support at school to help them remember what they are being taught. If you feel your child may have memory problems you should discuss these issues with the school. We have more information about epilepsy in schools.

The Centre for Working Memory and Learning at the University of York carries out research into memory and learning in childhood. Their website has information for parents and teachers, including a guide to supporting children with memory problems in the classroom.

If you are in higher education and have memory problems, you could speak to the college or university disability advisor about adjustments to help you. This could include recording lectures or being given extra time in exams. We have more information about epilepsy in higher education.

“The disability support services at my university provided me with a dictaphone and I was able to record all my lectures. I also would use my phone to record myself, and then right up to an exam I would put my headphones in and listen to myself right up until the exam door.”

“For a tough exam last year I spent a while changing catchy song lyrics to facts and theories and then listened on repeat. It definitely helped!”

Find out more about how memory works.

Read our hints and tips for coping with memory problems.

Code: 
B099.03

Our thanks

This information has been adapted from the booklet Memory and epilepsy, produced by Epilepsy Action and written by Professor Gus Baker and colleagues at the University of Liverpool. It has been updated by Epilepsy Action’s advice and information team, with input from people living with epilepsy. Download the Memory and epilepsy booklet.

Disclosure

Professor Gus Baker has no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated November 2015
    To be reviewed November 2018

Comments: read the 6 comments or add yours

Comments

I am 68. I have had temporal lobe epilepsy for about thirty years but it is well controlled now. However, my short-term memory is getting poor and I think this is more than just 'senior moments'. I am fairly confident that it is due to long term use of antiepileptic medications, though I am reluctant (as I have discussed with my neurologist) to reduce these, not just because of the possibility of having a seizure but of being unable to drive, as twice previously, which is now more a lifeline to me as the years go by. Quite a dilemma.

Submitted by Nigel Radcliffe on

Hi Nigel
That is going to be a difficult balance to get. It is really common for people with epilepsy to have memory problems. As you say, your epilepsy medicine may well have played a part in this. But it is also true that people with temporal lobe epilepsy are more likely to have memory problems than other people.

I wonder if you have thought about asking your neurologist for a neuropsychological assessment? This would give you an idea about which types of memory are most affected for you. And that could help you decide which strategies are going to be most helpful for you.

In the end the decision about whether to reduce your epilepsy medicine must be yours, based on guidance from the neurologist. There are DVLA rules about changing your epilepsy medicine which could possibly mean you would only have to stop driving for six months if you did have a seizure, but that couldn’t be guaranteed. You may have to wait until you have been seizure-free for 12 months.

I hope this information helps you to make the decision that is right for you.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Thank you for this. A neuropsychological assessment is likely to be of interest. The possibility of a shorter time of stopping driving than I thought, if I had a seizure after reducing medication, is encouraging. On reading the DVLA rules again, they seem more detailed than when I last looked, so I would encourage others to do so as well.

Submitted by Nigel Radcliffe on

Are there any foods that anybody with epilepsy can be encouraged to eat for stablising the condition or other side effects that come along with seizures-i.e memory loss

Submitted by janet mogotu on

Hi Janet
We’re not aware of any specific foods that are proven to help with seizure control or side effects. Generally the advice for people with epilepsy is the same for everyone, to eat regular meals and follow a healthy, well balanced diet.

There is a special diet called the ketogenic diet that’s sometimes used to control seizures in children with epilepsy. It should only be followed under supervision from a dietician who is an expert in the diet, and it’s not commonly used for treating adults. The charity Matthew’s Friends has more information about diet and epilepsy. We understand they are planning to launch a healthy eating programme aimed at people with epilepsy soon, so if you are interested you may wish to contact them or keep an eye on their website for details.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

My epilepsy started at the age of 3, when it suddenly started on a random basis, and in some how related to by sudden changes in body temperature, for example jumping in to cold water when the body was hot as a result of being in the sun; alternatively when I had be been bathed, hot and started to cool down.

This sudden change of temperature could make me shiver, and that in turn could trigger a fit. The same could happen with over-heating. I had a Status Epilepticus fit when I was seven years old, as a result of fracturing the patella in the right leg. Because there was no obvious fracture, and it looked as though I had just scraped it, my father made me walk on it.

I went in to shock, which triggered the fit. I had my phenobarbitone increased to 100mg per day, which by accident I was left on for over 4 years. Actually the original instructions by the Neurologists (who had subsequently retired) had been recorded incorrectly and instead of writing a prescription for 2 years, placed me on a "sine die" prescription, with a caveat that I should be reviewed after two years.

My mother dutifully picked up the prescription and dispensed it to me as directed. It was by fluke that I went to Germany with my mother to meet my father who had take a ship in to dry dock (he was First Mate of the Ship).

At that time (1975) it was required that you had Small-pox, Typhoid, along with a top up for those up to age 14, Polio. We received these but it had been forgotten that I was still on Phenobarbitone (Phenytol). The combination caused me to pass out.

Having be brought around by the GP, and satisfied it was not a fit but a clash in the drugs my mother and I went to leave. My mother suddenly realised that I was going to run out of phenobarbitone whilst we were abroad.

The doctor had been writing up the notes, whne my mother turned to him asking for an interim prescription. It was then it was realised that I was not supposed to have been on the drug for 12 months, and then weaned off to see if there was a threshold. It turned out that I had been on an adult dosage, since the age of 7; and I was now 11. Actually I very nearly became addicted.

I was successfully weaned off, and all was well until I was 35. Out of the blue, and whilst introducing a new member staff to the company I was working with, suddenly lost my speech faculty, collapsing and suffered a massive Tonic Clonic seisure. That was a turning point in terms of my career.

I re-developed epilepsy in 1999, following a very stressful time at work, made worse by an over-bearing line director. As a result of this stress, I had a serratonin over-load and threw a massive seisure; actually it nearly killed me.

The company actually could not get me out of their employment fast enough as I was now seen as a risk to them. I did successfully raise an action for constructive dismissal, which was settled out of Court on the "steps" (as legalise refers to it).

This has been the case in a number of instances where I have had an episode at work (I work freelance) and there is no coincidence that shortly after the seisure the contract quickly came to an end. This indicates the fear that employers have of the condition, and it would appear that they are more concerned about their insurance policies than

Since then I have had random seisures, may be only once or twice a year; the only common factor being that they have been in the August to January time-frame. However each have had a different cause, the only exception being sugar over-load and shortage. These again were 12 months apart so not really connected.

The bottom line is that the specialists cannot provide a definitive answer, but placed me on three different drugs: Clonazepam, Lamotrogine , and Levacitrium. These have apparently resolved the problem.

I no longer have to disclose the condition, since I have been seisure free for over 8 years and discharged from the clinic, although still remain on the medication permanently.

It is of note that many people, including those in the likes of the Civil Service (who should no better) do not understand the implications of epilepsy relating to co-ordination (in my case getting lost), and short term memory.

Many employers do not grasp that short term memory means that I cannot just be shown something once, and learn immediately; I have to make quite detailed notes. The same goes for remembering appointments.

Although I do keep a diary, I sometimes forget to check it twice a day to see the times I need to attend meetings etc. I used have an electronic organiser, but later "died", such was the amount of traffic I put through it.

Many people do not understand memory and how it is affected by epilepsy. It is something that people take for granted.

In the case of the Department of Work and Pensions, this does not seem to be understood either. As a result of not attending a meeting, I have now been "sanctioned"( benefits withheld ), and despite showing them articles about the condition.

Finally it seems that our civil procedure does not take in to account conditions such as epilepsy which have "invisible" side effects. Most people conceive that only convulsive seisures are recognised. The non-convulsive varieties are not recognised.

This is a situation that needs to be addressed; and perhaps Epilepsy Action could raise awareness of these issues.

Submitted by Chris Richards ... on