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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


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
B099.02

Our thanks

This information was originally written by Professor Gus Baker, Amy J Hothersall and Jenna E Mallows. It has been updated by Professor Gus Baker with guidance and input from people living with epilepsy.

Because this information is written by an epilepsy healthcare professional, it falls outside the requirements of the Information Standard.

 

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

  • Updated November 2012
    To be reviewed November 2015

Comments: read the 29 comments or add yours

Comments

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

Nearly two yrs ago my husband was in a car accident & hit his head on the steering wheel (the air bags didn't deploy) ever since then he's had seizures. His Dr quit taking his insurance & now he's left without a Dr & his seizures r getting worse. He has no memory from the accident to date since his last seizure & idk what to do... PLEASE HELP!!!!!!

Submitted by Amanda Snyder on

Hi Amanda

In the UK, medical treatment is available to all. Your difficult situation sounds like it is in another country, where we don’t know the relevant procedures. The best idea would be to contact your husband’s insurance company to find an epilepsy doctor in your area that accepts his insurance, and make an appointment. There might also be an epilepsy organisation in your home country that could assist you.

Sacha                                                                                                                                                                              

Advice and Information Team

Submitted by Sacha on

I discovered I was getting clonic tonic seizures in my sleep along with partial seizures during the day. These have a profound effect on my memory. I went from top of the class to asking people how I got somewhere. I empathise with everyone with this hidden disability.

Submitted by Paul on

Paul, I can certainly empathize with your situation.

I graduated high school as salutatorian with exceptional memory and an extraordinary ability to learn new processes and skills. Since my first tonic clonic seizure in 2007, I have found that my ability to remember anything that people tell me, show me, ask me, etc., get lost very quickly. Almost immediately. I don't forget at every instance, but comparatively it feels as though I have no memory capacity whatsoever and it is making life incredibly difficult.

It has gotten to a point where the girl I am seeing will occasionally not tell me something because she "knew I would just forget whatever she would have told me." For someone who used to pride themselves on their memory, this has been a gigantic blow to my confidence and motivation. It absolutely affects every part of my life and is a continual struggle. That being said, I have since begun seeing a psychologist/counselor who has helped me a little to work through the anxiety and frustration that comes with this unfortunate side effect of living with epilepsy.

But in all honesty, this is the most difficult personal trauma that I've had to deal with. Even more difficult that the seizure disorder itself. And I think that it all comes down to the fact that if someone can't recall the majority of their life experiences, their prior passions and motivations, or the information that is relayed to them on a regular basis from friends, family and colleagues, then who are they? Do they truly have a personality? When my best friend of 25 years (I'm 31) asks me "Hey, do you remember that time when we did...?" and 9 times out of 10 my answer is "no", the main feelings that jump to my brain are self-loathing, embarrassment, and loss. I am hopeful that the counselor I am speaking with will be able to give me some coping mechanisms for dealing with this issue that is always in my face. I feel an immense amount of empathy and sympathy for anyone struggling with these effects of seizure disorders and epilepsy and I want to remind everyone that support communities and awareness organizations like this one are a major comfort and positive resource. As long as groups like this continue to exist and raise awareness, and as long as the medical industry continues to work on medications that reduce these effects, there will be hope and a listening ear.

Good luck to everyone. It ain't always easy, but not impossible.
- James

Submitted by James on

Thanks for your reply James. You very elegantly and accurately describe the feelings I have with respect to epilepsy related memory loss and the reality of living with it. I got my first seizure just before my 21st birthday. It happened in my sleep and I was unaware it had occurred. I woke exhaust, confused and with memory loss. I felt I had run a marathon. I had to give up my job. The doctors misdiagnosed my symptoms as anxiety. I lived the next 10 years not knowing what was wrong with me. it stunted my career and my education. It was not till I got married that I found out. I woke to see a paramedic at my bed and my wife in tears. I feel stronger now I know what is the cause. I no longer feel stupid. Instead I feel unique. I have completed a masters and I am in the middle of a PhD. I still have a woeful short term memory but I keep putting in the effort. I wish you all the best in the future and thank you for sharing your story. All the best, Paul.

Submitted by Paul Moroney on

Thanks for your post, Paul.

Life with epilepsy can be a very difficult adjustment. You might want to visit our website, where you can find useful information about epilepsy and living with epilepsy. People with epilepsy seek help for memory difficulties more often than for any other impairment. It’s a well recognised problem. Our website has a section on memory and epilepsy which might help: https://www.epilepsy.org.uk/info/memory

Thanks for your words of support, and we hope things begin to improve for you soon.

Sacha

Advice & Information Team  

Submitted by Sacha-Epilepsy ... on

I appreciate your kind words Sacha. I have been copying with epilepsy related memory loss for 13 years and I am now getting to grips with it. Thanks again for your empathy.

Submitted by Paul Moroney on

Hi, i have had epilepsy since i was 15- 9 years now. it started of as petit-mal, the they diagnosed grand-mal. i never suffered with memory loss until recently. im really scared as im a single mother. my fits can happen at any time but i never get any warning. the only problem is i live in spain.their health system is great but i feel i cant get any answers out of them about my memory loss. Would you think it would be a good idea if i get a second opinion if i come back to england

Any help would be apreciated.

Thanks

Submitted by Vicky on

Dear Vicky

Thanks for your post. As you will have seen from our web pages, memory loss is a common problem for people with epilepsy. And there are a number of different things it could be linked to.

A doctor offering a second opinion may be able to look at altering your treatment in some way to give you better seizure control. They may also consider whether it would be a good idea to change your epilepsy medicine because of you memory problems.. Or it may be possible to organise a private appointment for a neuropsychological assessment.

You would not be able to see a doctor in the NHS unless you were living in the UK. So the only other option would be to see someone privately. Kings College Hospital in London is one place where you may be able to get an appointment. I have linked you to their information for private patients.

And indeed the President of the Spanish League Against Epilepsy is based at King’s College hospital.

I do hope this is of some help to you.

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

I am 53 years of age and I have had a nocturnal form of epilepsy since 1989 (25 years) and I have been taking a combination of epilim and tegretol anticonvulsant medication almost from the beginning. I only have fits in my sleep and relatively infrequently (about 3 times a year). But when I do have them they knock me for six. I feel very ill for about 48 hours and badly concussed for up to three weeks. After approx. three weeks the feeling of concussion has totally gone and life returns completely to normal. But during that time my memory is terrible. I cannot remember the names of friends and neighbours whom I have known for years. It can be embarrassing. Is this normal and might long term deterioration be a consequence ? Are other people affected in this way? The rest of the year my memory seems fine. But the fits and the weeks immediately following them are very stressful.

Submitted by Peter Charnley. on

Dear Peter

Thank you for your question. That sounds like a really difficult thing to deal with. And it is a long recovery time. This may be linked to the particular type of epilepsy you have, or the particular place in your brain the epileptic activity is happening.

As you will have seen from the web pages, having  a problem with your memory, particularly after a seizure, is quite common. But it must be very distressing to have it change so much during your recovery time.

I wonder if you have seen a neurologist recently? If not, I would suggest asking your GP to refer you back to one. We aren’t medically trained, but it would certainly be worth talking to your neurologist about what you are experiencing.

At the least they may be able to explain why you are having to cope with this amount of recovery time.

And it may even be that they are able to do something to help you recover more quickly from your seizures, and with less memory loss.

I do hope things improve for you. 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.

Best wishes

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

hi my name is masentle an I have been diagnosed by epilepsy since I was 6years and now I'm 27 years,now im facing difficulties on my studies I can't concentrate I forget easily,and its tough because people think I'm stupid I even become ashame of myself please help me doctor

Submitted by Masentle Radebe on

Hi Masentle

Studies can be very challenging for a lot of students with epilepsy, and many need additional support and adjustments. The institution where you study might have some resources that could help.

If you’re in the UK, you can contact the disability adviser at the college or university, to talk about additional support you might need. Please see our advice for students in higher education for more details. In the UK, you might also contact the Disabled Students Helpline, and the Disabled Students’ Officer of your student union for additional advice and help.

If you are outside the UK, you could contact an epilepsy organisation in your country, who might be able tell you about help and the best thing to do where you live.                         

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

I have had grand mal seizures for 25 years and currents meds cannot control it. I have monthly seizures and have been told I have small seizures constantly that i don't even realise. I have started working as a medical receptionist in a busy practice. I am finding it really hard to remember all the different aspects involved in my job and finding that I cant process information quick enough to do my job to the standard expected. Is it possible that my brain has been damaged from many years of seizures?
Other jobs I've had haven't been so fast paced. I don't know what to do, I don't think my employer will keep me on if I can't keep up. Help?!

Submitted by TraceyW on

Hi Tracey

That sounds like a difficult situation. Ittough when you don’t feel you can do your job fully.

It is quite common for someone with epilepsy to have memory problems, as you’ll hopefully have seen from the webpages.

It is, of course your choice how you deal with this, but I would have a concern that if you did nothing, you would just become more stressed and the whole situation would just get more and more difficult.

My suggestion would be to talk honestly with your manager about the things you’re finding difficult.

Because you have epilepsy you are covered by the Equality Act. If your employer knows you have epilepsy, they have to do a risk assessment. If any risks are identified, they then need to consider any possible reasonable adjustments.

If you have an idea of things that might help, it would be good to be able to make those suggestions to your manager. They could be considered as possible reasonable adjustments. We have some information about things for a teacher to consider. I know this is a work situation, but you might find it useful to look at this list, to help you come up with possible suggestions. I am also attaching this information as a pdf to make sure you can access it.

Here is all our information about work  in case there is anything else there you might find useful.

I do hope it is possible to have a constructive conversation with your manager. 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.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry-Epilepsy... on

Thanks Cherry, I will try what you have suggested and hope that my employer is willing to make adjustments to help.

Submitted by TraceyW on

Cherry,
Well I spoke to my employer about my difficulties in processing info quickly and asked whether there was any room for reasonable adjustments. The answer was NO. And even though she said it very nicely she still said that unless I could work to the speed needed in this practise, without taking other workers away from their work to assist me, it would be best for me to leave.
Merry Christmas to me...I have two more days work and then I'm unemployed!

Submitted by TraceyW on

Hi Tracey

Employers can not just say no to reasonable adjustments. As soon as your employer knows about any problems your epilepsy is causing you in your workplace, they have to make any reasonable adjustments. These are adjustment that could be helpful for you to do your work.

If after assessing your situation no reasonable adjustments can be made, your employer has to justify their decision. To find out more about your employment rights may I suggest you contact one of the helpful organisations listed on our work – further advice and information webpage.

Regards

Diane, Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on

http://www.legislation.gov.uk/ukpga/2010/15/section/20

20 Duty to make adjustments

(1)Where this Act imposes a duty to make reasonable adjustments on a person, this section, sections 21 and 22 and the applicable Schedule apply; and for those purposes, a person on whom the duty is imposed is referred to as A.
(2)The duty comprises the following three requirements.
(3)The first requirement is a requirement, where a provision, criterion or practice of A's puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.
(4)The second requirement is a requirement, where a physical feature puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.
(5)The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid.
(6)Where the first or third requirement relates to the provision of information, the steps which it is reasonable for A to have to take include steps for ensuring that in the circumstances concerned the information is provided in an accessible format.
(7)A person (A) who is subject to a duty to make reasonable adjustments is not (subject to express provision to the contrary) entitled to require a disabled person, in relation to whom A is required to comply with the duty, to pay to any extent A's costs of complying with the duty.
(8)A reference in section 21 or 22 or an applicable Schedule to the first, second or third requirement is to be construed in accordance with this section.
(9)In relation to the second requirement, a reference in this section or an applicable Schedule to avoiding a substantial disadvantage includes a reference to—
(a)removing the physical feature in question,
(b)altering it, or
(c)providing a reasonable means of avoiding it.
(10)A reference in this section, section 21 or 22 or an applicable Schedule (apart from paragraphs 2 to 4 of Schedule 4) to a physical feature is a reference to—
(a)a feature arising from the design or construction of a building,
(b)a feature of an approach to, exit from or access to a building,
(c)a fixture or fitting, or furniture, furnishings, materials, equipment or other chattels, in or on premises, or
(d)any other physical element or quality.
(11)A reference in this section, section 21 or 22 or an applicable Schedule to an auxiliary aid includes a reference to an auxiliary service.
(12)A reference in this section or an applicable Schedule to chattels is to be read, in relation to Scotland, as a reference to moveable property.
(13)The applicable Schedule is, in relation to the Part of this Act specified in the first column of the Table, the Schedule specified in the second column.
Part of this Act Applicable Schedule
Part 3 (services and public functions) Schedule 2
Part 4 (premises) Schedule 4
Part 5 (work) Schedule 8
Part 6 (education) Schedule 13
Part 7 (associations) Schedule 15
Each of the Parts mentioned above Schedule 21

Take a voice recorder into any meetings you get get pulled in for.

Submitted by john on

Get everybody's name on the voice recorder and every other word is DISABILITY DISCRIMINATION and UNION or SOLICITOR.

Submitted by john on

EQUALITY ACT 2010

http://www.legislation.gov.uk/ukpga/2010/15/contents

DISABILITY DISCRIMINATION

http://www.legislation.gov.uk/ukpga/1995/50/contents

VOICE RECORDER IN EVERY MEETING..... CARRY ONE AT ALL TIMES

UNION or SOLICITOR

EVERYBODY'S NAME ON VOICE RECORDER

You have to have, as far as, I am aware 2 weeks written notice before any disciplinary's and a solicitor or union representative in with you.

DISABILITY DISCRIMINATION AT EVERY SENTENCE

I AM NOT A SOLICITOR

Submitted by john on

What worked for me was to go into any disciplinary/meeting's with the voice recorder in your pocket.

Take the person's name and position within the company/organisation that you work for.

Ask the reason you are there and point out the illegal aspect to that situation.

And then tell them you are recording there voice as that is against whichever legal Act, Regulation, Aspect of the Law, it is against.

Do NOT take the voice recorder out of your pocket. You have informed them that you are recording there voice. And believe me they will be a LOT more worried about losing THEIR JOB.

Submitted by john on

Hi im sam and im 19.
I was diagnosed with tonic clonic epilepsy about a year ago. Since then ive had multiple close calls to seriously hurting myself. Im just wondering if anyone suffers my symptoms. Basically ill go blank and be able to sleep walk and talk too myself. Last time it hit me i was in the shop and was stood there puking with a vacant expression. The stereotypical corner shop woman tried charging me 50p to get cleaned up the nutter. I have no recollection of getting home and when i did i had a serious grand mal mot even remembering what happened during the day. This is the second time its hit me in the shop. Last time i woke up in hospital again several hours later. I can sleepwalk for a long time not even realising. Anyone have this?

Submitted by Sam on

Dear Sam

Thank you for your comment.  It sounds like you’ve been through some very tough times.

What you’ve explained could be a type of focal seizure. In focal seizures, epileptic activity starts in just part of your brain. You might be aware of what is going on around you in a focal seizure, or you might not. We have heard of people who during a focal seizure carry on with their activity and getting home without knowing how.

If you haven’t already, you may wish to talk to your consultant about these episodes.  If it is epilepsy causing these symptoms, your consultant may be able to do something to help. For example, the may alter your epilepsy medicine dosage or the type of medicine you take.

If we can be of more help please feel free to contact our helpline team. You can phone our freephone helpline on 0808 800 5050 or email helpline@epilepsy.org.uk

Diane Wallace

Epilepsy Action Advice and Information Team.

Submitted by Diane, Epilepsy... on

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