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Memory difficulties in people with epilepsy

The presence of memory difficulties in people with epilepsy is well recognised. In fact people with epilepsy seek help for memory problems more often than for any other impairment. Research has shown that a large portion of memory is located in a specific area of the brain known as the temporal lobe.

The temporal lobe

There are a number of reasons why people with epilepsy may have memory difficulties.

  • Epileptic seizures can affect memory functioning because, in order for memory to work properly, the brain needs continuous self-monitoring. This self-monitoring system can be disrupted during a seizure. Memories before a seizure can be lost, as they have not been fully incorporated into our memory system. During a seizure our memory may also be affected, because a loss of consciousness can interfere with normal brain processes, disrupting the encoding and storage of information. The confusion that can occur following a seizure can also prevent our memory from working properly. Some people with epilepsy can experience unusual electrical activity within the brain between seizures and this can also affect attention and memory functioning.
  • An underlying brain tumour or lesion can disrupt the memory process. Therefore if a tumour or lesion is located in the temporal lobe, which is a part of the brain needed for memory, this may also cause memory problems.
  • Some anti-epileptic medications may interfere with memory functioning as they can affect the speed at which the brain can process information. On the other hand they also reduce seizure frequency and, as we have discussed, frequent seizures can also cause memory impairment. If you are worried your medication may be affecting your memory, it is important to speak to your doctor about your concerns. They can investigate this possibility and will discuss possible solutions with you.

How are people with memory problems affected?

Memory problems can affect people in different ways. It may be that a person’s memory problems are very general, and will therefore affect most areas of memory functioning. However they can also be very specific and might only affect one aspect of memory functioning, such as remembering what people tell you.
Memory problems can cause a range of difficulties, making it difficult to cope with everyday living and relationships. These difficulties can cause a great deal of distress for the person affected. However, while a memory problem cannot be cured, it is possible to adapt to having a memory impairment, making it easier to cope and live a relatively normal life.

Neuropsychological memory assessment

In order to get an accurate assessment of your memory function, the doctor may suggest carrying out a neuropsychological assessment. Neuropsychological simply means looking at the processes that the brain carries out, one of which is memory. This assessment aims to get an accurate idea of how well your memory is currently functioning and will be carried out by a psychologist. It will look at all areas of your memory ability. More specifically it will be looking at your ability to remember pictures, stories and numbers. Through looking at these areas, the psychologist will be able to discover where your memory difficulties lie and if there is any difference between your:

  • visual memory (your ability to remember pictures); and
  • verbal memory (your ability to remember information presented orally).

This information then provides some focus on which memory enhancement strategies are going to be the most helpful to you.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
B099.02

This information is exempt under the terms of The Information Standard.

  • Updated November 2012
    To be reviewed November 2014

Comments: read the 18 comments or add yours

Comments

My daughter is at uni she's had epilepsy since childhood and been on certain drugs she suffers from cluster siezers but with no warnings and can have up to 10 siezers a day with another drug we are trying to get this under control but she is now suffering from memory loss and being at uni this is making her depressed because she doesn't remember the lectures and has trouble doing course work she's had MRI scans but can not detect what part of the brain is not functioning properly can you please give me any advice

Submitted by Amanda Sherwin on

Hi Amanda. Many people with epilepsy complain about memory problems. I’m sorry to hear that this is causing your daughter to struggle with her university work and feel depressed.

If your daughter has not already read the Memory enhancement strategies page of this website, she may find it helpful to do so.

Because your daughter has epilepsy, she is covered by the Equality Act. This is a law which aims to protect her from unfair treatment. It means that the staff at the university have a duty to make any ‘reasonable adjustments’ to overcome any difficulties that her epilepsy is causing her. So, your daughter could also talk to her tutors and ask if there is any thing they can do, to help her. For example, this may include giving her written notes from lectures.

I hope that helps.

Amanda
Advice and Information Team

Submitted by Amanda@Epilepsy... on

My girlfriend of 11 years and the mother of our 3 year old daughter has delt with seizures since she was 16. Her memory has degraded to the point that she will forget what she was talking about while she is talking. This is affecting her to the point that she is very depressed and feels she can't do anything anymore. She has had testing done by her nuralogy doctor, and was told that her memory is fine. I know this is not true, I see what goes on with her every day. She has been on phenobarbital since she was 15 or 16, and recently was put on lemictal in addition to the phenobarb. Along with these drugs for her seizures she is also taking seroquel for sleeplessness and depression, and also buspirone. We really need some advice on where to go from here, she needs to know that there is help for her and she can be ok. Thank you.

Submitted by Eric Kwasny on

Hi Eric

Sorry to hear of your girlfriend's situation. It must be very frustrating, as well as upsetting for her.

Memory problems due to epilepsy can happen for a number of reasons.  If you haven’t already, you may wish to look at our webpage on Memory difficulties in people with epilepsy. This webpage has information on how seizures and some epilepsy medicines can affect the memory.

Memory problems can be a side-effect of various medicines, including epilepsy medicines. As your girlfriend is on various medicines could she ask for her treatments to be reviewed?  We are aware that phenobarbital can cause memory problems. We can’t unfortunately comment on medicines not taken for her epilepsy. You might like to contact Mind UK, for information on her buspirone.  

If, after the review, your girlfriend's phenobarbital needs altering, it’s advisable that she talks to her doctor about the risk and benefits. For example, it could improve her memory but could have an effect on her seizure control.

As well as epilepsy, there could be other reasons why your girlfriend is having memory problems. Please use this link for examples of why this can happen.

Ideally, your girlfriend should have had a neuropsychological assessment in order to get an accurate assessment of her memory function. If she hasn’t, she could ask her neurologist to be referred to a psychologist. She may also find it helpful to talk to her family doctor about her situation.  

If your girlfriend doesn’t already, she may wish to keep a diary. She could record when she experiences memory problems and what was happening at the time. A diary can be a helpful record of what’s been happening with her memory, for her and her doctor.

If we can be of any more help, please feel free to contact us again. You can contact the helpline team directly, either by email or the Epilepsy Helpline freephone.

Yours sincerely

Diane
Advice and Information Team

Submitted by Diane@Epilepsy ... on

Dear Eric,
i am so glad of your post as i thought i was the only one like this & cried as your girlfriend sounds just like me, it is a very frightening time when you think you are loosing your mind at a young age im on lansoprasole & clonazepam( ive probably spelt one of those wrong) but talking to your gp is best. im now being sent for another mri to rule out anything sinister before seeing my neurologist. i hope you both get this problem sorted soon

Submitted by Shellie Doyle on

I run an online language learning site with games, and people contact me with questions about language learning. A couple of people have asked me about tips and strategies for learning a foreign language for someone who has epilepsy. Has anyone had experience with this? Are there sites that address language learning for a person with epilepsy?

Submitted by Ulrike Rettig on

Hi Ulrike.

Some people with epilepsy and certain epilepsy syndromes may have difficulties with learning and language. Their approach to learning anything new would be the same as for a person who has not got epilepsy.

If a person with epilepsy has memory problems, they may find our memory enhancement strategies and strategies for specific memory problems useful.

We are not aware of any sites that address language learning for a person with epilepsy.

Vicky
Advice and Information Officer

Submitted by Vicky@Epilepsy ... on

I have epilepsy and I have had it since I was 12 years old. I wasn't born with mine. I had a near drowning. We went thru so many medications and I finally have a VNS that was approved as an implant but I still have memory
Loss and I get fatigue constantly. I would like o know if your study has anything for me. I live in Hawaii and I am sure I would mo e to the end of the world to try to find help for me.

Submitted by Sue Lynn ah yuem on

Hi Sue Lynn,

I’m sorry, but I’m not sure which study you mean. We do sometimes get asked to put research up about memory, but there is nothing at the moment.

As you can see from the web pages, memory loss is a problem for many people with epilepsy. Tiredness is too. I wonder if you’re still taking epilepsy medicine. If so, you may want to talk to your doctor about the possibility of changing it slightly to see if that helps with your fatigue. Often tiredness is a side effect of the medicine.

You probably already know about the Epilepsy Foundation of America. But you may also be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation. I think it’s on a slightly smaller scale than the US one.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050. 

Yours sincerely

Cherry

Advice and Information Team

http://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in

http://www.epilepsyfoundation.org/

https://www.forum4e.com/

Submitted by Cherry on

We have a 65 year old guy working with us who has epilepsy who last week got caught stealing from the work place and claims its caused by his epilepsy and thought he had paid for it!! Can this happen???

Submitted by Sarah on

Dear Sarah

Thank you for your question.

It’s a possibility for some people with focal seizures not to be aware of what they are doing during a seizure. We have heard of situations similar to this one.  Sometimes someone experiencing a focal seizure may wander off or carry out an act, without any awareness of what they have done. They may only realise they have had a focal seizure because they are confused or there is a witness.

We can’t comment on your colleague’s situation. You may need to ask your colleague to talk to his epilepsy specialist. The specialist may be able to confirm if his actions could be related to his epilepsy or not.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Diane Wallace

Advice and Information Team

Submitted by Diane on

I have had epilepsy since having toxaemia with my first pregnancy ,i seem to manage my epilepsy well enough to hold down a full time job ,the only real upsetting problem I have is my inability to retain memories of things I have done, places I have been ,films I have watched etc .This problem not only upsets me but my husband as well as we cannot share memories of things we have done etc. Also I cannot recall past memories of events that have happened with work colleagues ,which they find hard to understand

Submitted by val on

Hello, my teenage son has been told he may need surgery to relieve his temporal lobe epilepsy, as two different combinations of aed have failed. We are really confused, and wonder if you know of any useful books about epilepsy surgery?

Submitted by Brenda bridgland on

Hi Brenda

I’m not surprised you are feeling confused – it’s a lot to take in. But we have information here about the Children’s Epilepsy Surgery Service in England, and the most common types of surgery done. We are also in the process of making a DVD for children and young people about some of the tests they will have before surgery. The people in the DVD are either young people preparing for surgery, or who have already had surgery. They explain what it was like for them. If you would like to contact us at the end of the year, we should be able to let you see a copy.

If you are not in England, our information will still give you some basic information about surgery, but your local epilepsy association may be able to help you more.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050. 

Kathy

Advice and Information Team

Submitted by Kathy on

Hi, I found out I had epilepsy about two years ago, probably more I can't remember specific information too far back. I remember the doctor asking if I was struggling with my grades when I was still in high school. I have not sought any treatment. My parents were scared of the treatment and did not accept it when I had insurance. At the time the doctor asked I would forget things that were not very important, like what I ate for breakfast, because they were trivial things I did not care. Lately I cannot remember much of my classes, and even though I study very hard I cannot retain much of the specific information that I need to. I can remember general information. I did not want to have to report a disability, but now I am thinking that my epilepsy has gotten worse. My question is should I seek out disability benefits and does it really help? Also is there anything that can help with my memory? I find it difficult to continue like this, because I am in college.

Submitted by Grace on

Hi Grace

Thank you for your message. If your epilepsy has become worse, it would be a good idea to talk to doctor, to see if they recommend you consider some treatment. Memory problems are very common for people with epilepsy.  Here’s some information that tells you more

In terms of reporting a disability, this depends what you want to achieve, and which country you live in. Do you need extra consideration in college, in work, or for some other purpose? If you are in the UK, you are protected by the equality laws, as a person with a long-term medical condition. You won’t automatically be eligible for disability benefits, but you might find our information about possible entitlements for people with epilepsy of interest.

If you are in a different country, you could contact the nearest epilepsy association for advice.  

Kathy

Advice and Information Team

Submitted by Kathy on

Hi, I am a 53 year old Registered Nurse who has recently been diagnosed with epilepsy. I had 3 medication errors (no adverse events, thankfully) and had no recollection of them at all. As my seizures only became apparent in October last year, I am wondering if my forgetfulness earlier in the year may have been an indicator? I am now undergoing investigations from the Regulatory Authority to determine if I am competent to continue my career.

Submitted by Leanne on

Hi Leanne

That sounds like a very difficult situation to be in.

There are many different seizure types. These include focal seizures in which you can experience an altered consciousness. And people with epilepsy do often experience memory problems. But I am sorry I am not in a position to say whether the medication errors could have bee linked to undiagnosed epilepsy.

You may also want to look at our information on work and epilepsy.

I do hope things work out okay for you.

Cherry

Advice and Information Team

Submitted by Cherry on

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