how epilepsy can affect learning and the university experience
I think not long ago epilepsy was something that people were almost scared of, but I think it's a lot more, there's a lot more information now and people know a lot more about it, so I think it's more accepted, if you like, and people find it to be okay and I think people with epilepsy can get along fine really.
Epilepsy can have an effect on your learning. However, there are things that you can do to help lessen its impact and manage your condition.
Everyone’s experience of epilepsy is different: it affects people in different ways and people feel differently about it. How it affects you will depend on lots of things:
- whether you have seizures
- what your seizures are like and how they affect you
- how long you have had epilepsy (whether you have been diagnosed recently or a long time ago)
- how you feel epilepsy affects your everyday life and what it means to you
- whether epilepsy has affected your school life and your learning so far.
Epilepsy is also a condition that can change over time. How it affects you now may be different from how it affects you in the future. And how you feel about it can also change.
Find out about epilepsy
Many people feel that finding out as much as possible about epilepsy can help them to understand their condition better.
There’s loads of information available about epilepsy. Look around this website or download our free smartphone app for iphone and Android phones. You can also call our confidential helpline or view or join our forum.
Know your epilepsy
General information about epilepsy can be very helpful – but how does it apply to you?
Learning more about your epilepsy might help you to identify whether your seizures follow a pattern (for example, do they happen if you are very tired, or at particular times of the month?). Looking for triggers for your seizures (situations that bring on a seizure) might mean that you can avoid situations that are likely to ‘set off’ seizures. It might also help you to develop ways of managing your epilepsy.
You might find that keeping a seizure diary helps you to keep track of when seizures happen, and to look for patterns and triggers for your seizures. And, if you are taking medication for your seizures, keeping a diary of when seizures happen might help you to work out whether the medication is being successful in reducing or stopping your seizures.
Our free smartphone app contains seizure management tools, including a seizure diary to help you monitor your triggers. Alternatively download a PDF seizure diary or get a printed seizure diary from our shop.
The effects of epilepsy
Having epilepsy can affect you in lots of ways. This can be because of the cause of your epilepsy, because of the impact of your seizures, or because of any medication or treatment you receive for your epilepsy.
The cause of your epilepsy
There are lots of reasons why someone might have epilepsy. Causes of epilepsy vary from inherited conditions to head injuries. You may know why you have got epilepsy, or no cause may have been found for your epilepsy.
If your epilepsy is the result of an illness or brain injury, sometimes referred to as symptomatic epilepsy, this cause itself could affect you. For example, a cause that affects the temporal lobe of your brain could affect your memory. The cause of your epilepsy could also affect your ability to concentrate, which is also an important part of learning.
The impact of your seizures
The impact of your seizures depends on what they are like and how often they happen. If your seizures are completely controlled by medication, you might find that they have no impact on you at all.
Do your seizures affect your memory? This could happen with any type of seizure, and if you have lots of seizures, you might find that they affect your memory more often. For example, a seizure in the left temporal lobe of the brain (which is important for ‘verbal’ memories) might mean that you find it hard to remember words. Seizures in the right temporal lobe (which is important for ‘visual’ memories) might mean that you find it hard to find your way around a new place. Seizures in the frontal lobe (which is important for ‘prospective’ memory – about things to do in the future) might mean that you find it hard to remember to do things in the future. You might also find that just after a seizure you have problems remembering information and it may take time to recover.
That's the main thing, I just lose memory and I have the worst headache ever I've ever experienced for like, it tends to last between 24 and 48 hours.
Seizures can affect your concentration both during the seizure and while you are recovering from it. If this happens while you are in lectures, for example, you may not be able to concentrate for some time afterwards. How well you can concentrate also depends on how you feel: if you are confident and happy, this can help you to concentrate and take in information. If you are feeling low or tired because of your seizures, you may not be able to concentrate well.
Physical effects of seizures (during and after)
Some seizures may not affect you physically, or may cause you to behave strangely just during the seizures. Afterwards there may be no physical effect. Other seizures may cause you to fall down, and this can cause injuries that you may need to recover from. Convulsive seizures (where you fall and shake or convulse) can affect you for a long time afterwards: some people take days to recover fully. These seizures can make your muscles and your head ache, and can make you physically ‘wiped out’ for a long time.
It seemed at one point I was always injured. I always had a burn or, a cut. I don't know how they happened, but I'd put the kettle on one day and then came around and was burnt all down my body – I'd put scalding water on myself.
If you have seizures, they can take a long time to recover from. While some people may be able to go about their normal activities quickly after a seizure, others may feel incredibly tired following a seizure: they may need to sleep and take time to rest afterwards. If you have seizures during the night, which can affect the amount and quality of your sleep, this lack of sleep can also have a big impact on you and on your day-to-day activities.
Emotional and psychological effects of seizures
Having seizures can be very upsetting, and living with the uncertainty of when seizures will happen can be incredibly debilitating and make you feel anxious. Some seizures themselves may affect your mood and emotions, or the fact that you have seizures can affect you. The way you feel can affect, and be affected by, your seizures. And if you feel anxious or stressed, this can affect your concentration and memory.
I gradually sort of come round. I'm very distressed, really, really upset and I never know where I am. I don't usually know what's happened as well. I don't usually know I've had a seizure. Someone usually has to tell me. And then I get very upset, cry, cry a lot, quite often I'm sick afterwards as well. I'm like very groggy, and then tired really and I just need to sleep, and I sleep for about 3 or 4 hours maybe.
The impact of treatment
Most people with epilepsy could have their seizures fully controlled with medication. But whether your seizures are controlled or not, taking medication or other forms of treatment can also affect you.
Because medication works on the brain to stop seizures from happening, it can also have side effects that affect how your brain works. Side effects can make you tired or drowsy, they can affect how quickly you can think and process information, or they can make it harder to learn or remember things. All these issues are important when you are studying.
For some people with epilepsy, having brain surgery can help to reduce or stop seizures. While surgery may help to reduce the impact of having seizures, surgery itself can potentially cause problems, particularly with memory. When someone is being considered for epilepsy surgery, the possible impact of surgery, and how their memory may be affected, will be carefully considered to see whether surgery is suitable.
The impact on learning
But then also there is the fact that under stress I have more seizures. I mean, usually day to day my medication completely covers me and I'm fine, but if I'm really, really stressed out, like for example, I am just before an exam.
Some people with epilepsy will find that their ability to learn is affected by having epilepsy, by having seizures and by taking medication for their seizures. Again, the actual impact depends on the number and type of seizures someone has, and how they are affected during and after the seizure. Here are some examples of the ways in which epilepsy might affect you, along with some suggestions about what you could do to minimise its impact.
Seizures can affect your concentration both during a seizure and afterwards. If they happen during classes or lectures, it can be hard to concentrate on what is being said or to take notes.
If you know that your epilepsy affects your ability to concentrate, then it may help to think about whether having a note-taker during classes or lectures might be helpful. You might also find that certain times of the day are better for studying. For example, if you have seizures during the night or early morning, studying later in the day, once you have recovered, might be better.
Seizures can affect your memory: your ability to take in, store and retrieve information. This can happen during and after a seizure. This may be an ongoing issue (for example, if it is caused by your medication) or it may happen just following seizures.
I also had memory problems, sort of, to begin with but I actually went to the Dean of Students at the Uni, because on placement it was brought up, quite a lot on my placements by my supervisors, that I had memory problems and that I needed to address them. And the Dean of Students were really supportive and gave me a lot of tactics to sort of address it and I feel now that my memory isn't really that big a problem to me.
If your memory is affected, it may help to look at some ways of using memory aids and techniques to help. You could also think about whether having a note-taker or using a laptop to take notes might be helpful.
Disrupted classes or lectures
If you have a seizure during a class or lectures, it can be disruptive for you. Depending on how your seizures affect you, it may be only a minor disruption, or you may need to go somewhere quiet to recover, which will take you out of the class.
You could plan ahead for what you want to happen if you have a seizure during classes or lectures. It might help to talk to your lecturers about what your seizures are like, how they affect you and what you want to happen if you have a seizure. This could help to make sure you are not taken out of a class or lecture unnecessarily, and that you have a place to recover, if you need to. It could help to make sure you are treated how you want to be treated during a seizure.
Seizures can affect your exams in many ways. Many people find revising for and taking exams worrying and stressful. This could cause you to have more seizures than usual, if stress is a trigger for you. If having epilepsy affects your memory and your thinking speed, you might find exams more challenging than other people. Having a seizure before an exam might mean that you are too tired to take the exam or to do your best in an exam. And having a seizure during an exam could mean that you miss some or all of the exam.
You may find that special provision can help – for example, being able to take your exams in a separate room or having more time to complete the exam. You might be able to have someone to write for you in an exam (sometimes called an ‘amanuensis’). But this would need planning and you would need to talk to your lecturers and tutors about it.
Thinking ahead about your revision might also help, so that you revise at the best time of day for you. Revising somewhere very quiet might also help with concentration and memory. Also, planning your revision might make you feel more confident about getting it all done, and therefore might help you to be less stressed.
Practical work and course work
If your course includes practical or course work, you may find that your epilepsy affects this. For example, if you are doing practical work in a laboratory and you have a seizure, might this be a safety risk for you? Or, if you are doing a course with physical activities, how might having a seizure affect you?
Thinking about the type of course you are doing, and the risks from having seizures, may help you to plan ahead. It is important to be realistic about potential risks. For example, if you have a warning before a seizure, this might give you enough time to get to a safe place before the seizure starts, so your seizures may not pose any risk.
Many situations can be made safer with simple measures, and it might help to think of some ideas yourself or to talk them through with your lecturers or tutors. This means that your epilepsy need not restrict what you do unnecessarily.
Some university degrees include placements as part of the course. Even if your university lecturers and tutors know about your epilepsy, the staff at your placement may not.
Thinking about what the placement will be, and getting in touch with the people there as soon as possible, might help to reassure them about your epilepsy. Although it is important to be realistic about whether your epilepsy might affect the placement, it is also important to look at ways of making the placement safer, if necessary, so that you can get the most out of the experience. It may be worth talking to your tutors, and enlisting their help in liaising with the placement.
How you work
Does your epilepsy affect how you work? Epilepsy, seizures and medication can make you tired or mean that you find it hard to concentrate. You may have times of the day when you find it easier to study than others. Only you know how you work best: are you better with private study, group work, lectures or practical work?
If you are good at studying, then an academic course might be right for you. If you are better at practical work, then a vocational course may suit you better. Have a look through the course prospectus, or get in touch with the university, to find out more about how courses are run and assessed.
You could also think about whether doing the course over a longer period of time would help. You could then contact the university to discuss whether this would be an option.
How you feel
Having epilepsy and seizures, and being on medication, can affect how you feel both physically and emotionally. Seizures can cause injury and make you feel tired and ‘out of sorts’. Medication can make you feel tired and can affect your concentration and thinking speed. Epilepsy can make you worried, stressed, anxious and depressed. All these feelings can affect your overall well-being, and how you feel about life.
Being able to manage your seizures so that you have the fewest seizures possible and they have minimal impact on your life, might help improve how you feel physically and emotionally.
Generally looking after yourself (getting enough sleep, eating well and doing things that you enjoy) can also all help.
The epilepsy forum, I could not recommend that enough, those people are fantastic. It's the most amazing support group, because there are people from all over the UK, there are people with all sorts of different forms of epilepsy and I could ask them any question, they would answer it almost straight away. They would never, if you want to ask a question on there, it doesn't matter how silly it is, how basic it is, how trivial you think it is, they will answer it and they will answer it in a sensible way and they will treat you like a human being, because they have had the same problems themselves and they know what it is like to go through. So forums like that are absolutely amazing.
Finding people to talk to about your epilepsy, sharing experiences with other people or reading about people’s experiences might help you to feel that there are other people ‘out there’ who understand what you are going through. Try our online forum or Youth Health Talk (opens new window).
Epilepsy Society is grateful to YouthHealthTalk (opens new window),and the young people featured on its website, for allowing us to use their quotes.