NSE : Information about epilepsy : Frequently Asked Questions

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Information leaflets: Frequently asked questions

I don't have convulsions, so why does the neurologist say I have epilepsy?
There are lots of different types of epileptic seizures, almost 40 in fact. Not all seizures involve convulsions (jerking or shaking of the body). The seizure we think of when we think about "epilepsy" is the convulsive, tonic clonic seizure - which used to be called a 'grand mal' - but not everyone has this type of seizure. So you might still have epilepsy even if the seizures you have don't involve convulsions. Because epileptic seizures happen in the brain and affect the way our brains work, any of the things that the brain controls can be affected such as our consciousness, movement and behaviour.

When diagnosing epilepsy, the neurologist usually looks at lots of different things, including your medical history and the circumstances when seizures occur, to see if there is any another reason for your seizures. They will also ask about what happens during your seizures. Adding all these things together is the basis of diagnosing epilepsy - or not.
More information on seizures
More information on diagnosing epilepsy

I have seizures but I've been told it's not epilepsy. Why is this?
Not all seizures are caused by epilepsy. The word seizure describes any sudden, short event that causes a change in a person's awareness, their behaviour or feelings. So some seizures are caused by other conditions. For example, someone with diabetes could have a diabetic seizure; someone with a heart problem could have a seizure due to that condition; and some seizures happen for psychological reasons - these are often called non-epileptic seizures.

Epileptic seizures are seizures that are caused by a disruption in the way the brain normally works. Sometimes it can be confusing because when we refer to seizures on this website, we always mean epileptic seizure, but there are other types.
More information on seizures not due to epilepsy.

I have had seizures but my EEG and brain scan were both "normal". So why have I been diagnosed with epilepsy?
Epilepsy is a condition that is very difficult to diagnose. There is no single test that can say for certain that someone has epilepsy. The neurologist tries to get as much information from you to find out the most likely cause of your seizures. This includes looking at your medical history and asking you and someone who saw your seizures about what happened. It also often includes having an EEG and brain scan.

EEGs can sometimes be helpful in diagnosing epilepsy - if you have a seizure at the time of the EEG test. But EEGs can only show what is happening in your brain during the time you have the test. They cannot show what happened before the test, or what will happen afterwards. So if you don't have a seizure during the test, the EEG might not show any signs of epilepsy. Some people's brains show activity related to epilepsy in between seizures, and for them, the EEG might be helpful.

Brain scans are used to see if there is any obvious physical reason in the brain for seizures to happen. For example some people have scar tissue, lesions or tumours that might cause their seizures. But for many people a brain scan will show nothing unusual. This doesn't mean that they haven't got epilepsy. It just means that there is no physical reason that can be seen in their brain to cause their seizures.
More information on diagnosis

The neurologist said my EEG shows "epileptiform activity". What does this mean?
Epileptiform activity is the name given to the changes in brain activity, which are commonly seen in those who have epilepsy. EEGs can pick up the electrical activity of the brain through electrodes that are put on the head. If you have a seizure, it means that the electrical activity in your brain has been disturbed.

Epileptiform activity is often seen at times other than when seizures happen. This is called interictal epileptiform activity. If interictal epileptiform activity is seen, this does not prove a diagnosis of epilepsy, and if there's no interictal epileptiform activity, this doesn't rule epilepsy out. The diagnosis of epilepsy is largely based on the history of the events that have happened. In people who are likely to have epilepsy, the EEG patterns are useful to determine the type of epilepsy.
More information on diagnosis

How do I get a referral to a neurologist who specialises in epilepsy?
Many people with epilepsy are seen by a neurologist - a doctor who specialises in neurological conditions, which are conditions of the brain and nervous system. It is usually a neurologist who will diagnose your epilepsy, and discuss your treatment and management. In between seeing a neurologist, you would normally see your GP, for example for repeat prescriptions of your medication.

Sometimes people with epilepsy see a neurologist who specialises in epilepsy. If you want to be referred to an epilepsy specialist, you would need a medical referral. This is a referral from either your GP or your usual neurologist. You wouldn't be able to refer yourself, but you can ask your GP or neurologist if they will do this for you.

Will I have epilepsy for the rest of my life?
It is difficult to answer this question. Epilepsy is a condition that differs from one person to the next. Some people only have epilepsy for a certain time in their life, and others may always have epilepsy. Sometimes the neurologist might be able to predict what will happen over time, but this is not always possible.

Up to about 70% of people will get their seizures controlled once the right medication, at the right dose, is found for them. This means that they will stop having seizures. But this does not mean they don't have epilepsy anymore; because for many people if they stop their medication, their seizures start again.

Some children have a childhood epilepsy syndrome. This means that their epilepsy fits into a certain group of characteristics or pattern, such as a certain seizure type, certain age when seizures started, and a particular recording on their EEG. There are lots of different syndromes. Some have a predictable prognosis, which means the doctor may be able to say whether their epilepsy is likely to continue or not.

I always have seizures at the same time every month. Does this mean anything?
It might do if you are a woman! Some women find that they have seizures at a particular time during their menstrual cycle - often just before or during their period. This can happen if their seizures are affected by hormones. If a woman only has seizures during her periods, this is called catamenial epilepsy.

Some men and women find their seizures are triggered (brought on by) different situations. Triggers can vary from one person to another but might include tiredness, stress, or excitement.

If your seizures always happen at a particular time, it might be helpful to think about anything that could be causing them. Keeping a diary of your seizures to look for patterns might help you to identify any triggers. Then you could try to avoid those situations when your seizures are more likely to happen.
More information on epilepsy in women

What first aid do I give for different types of seizure?
What you can do to help someone having a seizure depends on the type of seizure they have and what the seizure looks like. Our information on first aid gives guidance on how to help someone if they are having a seizure. In general you can help someone by making sure they are safe and away from harm, and staying with them as they recover. Most seizures stop by themselves, and the person doesn't usually need to go to hospital.

It might also help to ask the person themselves how they would like you to help if they have a seizure. Some people might prefer you to help in a particular way. If the person has had seizures before, they are probably going to be the best person to talk to about how you can help them.
More information on first aid

Is there anything I can do to help reduce my seizures?
Most people take anti-epileptic drugs (AEDs) to try and control their seizures. For AEDs to work best they need to be taken every day. Also, some people find their seizures are triggered (brought on by) different situations. Triggers can vary from person to person but might include tiredness, stress, or excitement. If you know what triggers your seizures, then trying to avoid these situations might also be a way of reducing your seizures.

I have just been diagnosed with epilepsy and want to know what I can or cannot do.
There are no rules and no easy answer to this question. It might help to ask yourself what would you like to do? And does your epilepsy make these things difficult or risky? Are you still having seizures and what are they like? By looking at what you'd like to do, you can consider what risks having a seizure might cause in the situation. For example, if you like cycling but you have seizures where you become unconscious, what could happen if you have a seizure while cycling? Is there anything you could do to make the situation safer? Could you go cycling with someone who would know what to do if you had a seizure? Or could you take a different cycle path where there is less traffic? Often the key is to look at getting a balance between doing all the activities you want to and reducing any risk that your epilepsy might cause.

The one thing someone who has seizures can't do is drive. If you have a seizure and you are a driver, you have to stop driving and tell the DVLA (the Driver and Vehicle Licensing Agency). This is the law. If you then become seizure-free for a year you can apply to start driving again.
More information on safety
More information on driving
More information on employment

My daughter has epilepsy and is not allowed to take part in some activities, such as swimming. Is this necessary?
Epilepsy is different for everyone. So before making any decisions about what someone can and can't do, it is important to look at what the activity is, and what the person's epilepsy is like. That means that people will not be stopped from doing certain activities just because they have epilepsy.

If your daughter's seizures are controlled - so she does not have seizures - then she may be at no greater risk doing activities such as swimming than someone without epilepsy. If your daughter is still having seizures, it might be helpful to consider what risks her seizures might cause when swimming, and what can be done to make this safer? How frequent are her seizures? Does she have any warning before a seizure and could she let someone know? Could she swim with someone else who would know what to do if she did have a seizure? Most pools have a lifeguard who could keep an eye out for her. Looking at these types of things helps to build up an assessment of how risky an activity is, and what can reasonably be done to reduce risks.
More information on children

Is it safe for me to drink alcohol? What about taking recreational drugs?
For most people with epilepsy, the occasional alcoholic drink is not a problem. However, with certain anti-epileptic drugs, it is recommended that you avoid alcohol. The patient information leaflet that comes with your medication will say whether to avoid alcohol. Also, for some people, having too much alcohol or having a hangover might trigger a seizure.

Recreational drugs have risks for people with epilepsy, as some have been shown to trigger seizures or interact with anti-epileptic drugs.
More information on leisure

Is it safe for me to use a computer and watch television?
For most people with epilepsy, watching TV and using computers won't be a problem and won't cause seizures.

Up to 5% of people with epilepsy have photosensitive epilepsy. This means that they have seizures triggered by certain frequencies of flashing and flickering lights. This might be a TV or computer screen, the pattern of sunlight reflecting on a swimming pool, or moving geometric patterns like watching a moving escalator.

Whether you are photosensitive or not will usually be found when you have an electroencephalogram (EEG). Part of the EEG test is called 'photic stimulation' which means that a flashing light will be used to see if you react to it, although the light will be switched off before a seizure happens.

This doesn't always mean that watching TV will trigger seizures. What is important is the flicker frequency - the number of flashes per second. And there are some tips that can help if someone is photosensitive.
More information on photosensitivity

I have epilepsy. Will my children develop the condition?
The answer to this question is, it depends. Whether someone has epilepsy or not, depends on two things: whether they have had an injury to their brain - for example from an accident or infection - and their seizure threshold.

Everyone has a seizure threshold - like a pain threshold - which is their own likelihood of having seizures. Most people have a high threshold and so don't usually have seizures. Some people have a low threshold, and might start having seizures out of the blue, or their threshold is lowered by an accident, and so they might have seizures after the accident. A seizure threshold is part of our genetic make-up and can be passed from parent to child. Also, some people have epilepsy due to another medical condition that might be passed from parent to child. But just because a parent has epilepsy, it does not necessarily mean that their children will have it too.

If someone has epilepsy due to an accident, this will not be passed on to their children.
More information on pregnancy and parenting

My son has epilepsy. Is it safe for him to have vaccinations?
The area of vaccinations is a tricky one, and it can be a worrying time for parents, whether their child has epilepsy or not. The Department of Health recommends that every child should have their vaccinations, and having epilepsy does not usually prevent a child from having vaccines. The choice of whether to immunise your child is yours, but if you are concerned, it might be helpful to talk to your GP or health visitor about this.
More information on immunisation

How do anti-epileptic drugs (AEDs) work?
Anti-epileptic drugs (AEDs) work on the brain to try and make the brain less likely to have seizures, by stopping the disturbed brain activity that causes seizures. So AEDs try and stop seizures from happening but they do not cure epilepsy or cure the underlying reason why someone is having seizures. For example, someone might have seizures because of a head injury. AEDs cannot cure the damage from the head injury but they might stop the seizures from happening.
Information on medication for adults
Information on medication for children

Do I have to pay for my prescriptions?
In the UK, people with epilepsy do not have to pay for their anti-epileptic drugs or for any other prescriptions. To be able to claim your prescriptions free of charge, you need to complete a form:

FP92A in England
EC92A in Scotland
FP92W in Wales
HC11B in Northern Ireland.

You can get these forms from your GP, hospital or pharmacy.

Does it matter when I take my medication?
To work best, anti-epileptic drugs (AEDs) need to be taken regularly, usually once or twice a day. Although the exact timing may not be vital, it helps to take them at about the same time each day.

It may sound obvious, but when you take your AEDs they get absorbed into your body. To start with they are at a high level. As your body processes the medication and it is removed from your body, the amount left in your body gets lower. And then you need your next dose. By taking your AEDs regularly it means that the amount of AED in the body is kept at a fairly constant level rather than going up and down too much through the day. Then the AEDs are more likely to prevent seizures from happening.

Some drugs are slow-release, also called 'retard', 'chrono' or modified release. This means that the active ingredient in the AED - the part of the drug that works to prevent seizures - is released more slowly and steadily than other AEDs, so the levels of the drug are more consistent through the day. This also means that the drug doesn't have to be taken as often as other AEDs. If you're not sure if your drug is a slow release drug, your GP or pharmacist should be able to tell you.
Information on medication for adults
Information on medication for children

If my seizures get worse, can I take extra medication?
The dose of Anti-epileptic drugs (AEDs) that you take aims to stop your seizures from happening. You may have started at a very low dose, which was gradually increased to a level to stop your seizures. If the dose of medication does not stop your seizures, or if it used to work but now doesn't work as well, one of two things might be considered. Either you may need more of the medication, or you may need to try a different or additional AED. Either way, this would be done with guidance from your doctors, and they may already have a plan of what to do if the medication does not work. The dose of medication that works to stop seizures varies from one person to another.
Information on medication for adults
Information on medication for children

Do I need regular blood tests if I'm taking anti-epileptic drugs (AEDs)?
Blood tests can be used to find out the amount of medication in your body, and to see if the medication is working. This might be useful in certain situations, for example before starting treatment or to see if side effects are happening.

However, having regular blood tests is not usually needed for most anti-epileptic drugs (AEDs). Usually whether an AED is working or not is usually determined by whether you are having seizures or not. The only AED that needs regular blood tests is phenytoin. This is because even small changes in phenytoin levels can cause side effects or affect seizure control.
Information on medication for adults
Information on medication for children

What should I do if I get side effects from the medication?
Anti-epileptic drugs (AEDs), like all medications, can cause side effects in some people. Some side effects happen when you start taking an AED, and might wear off as you get used to the drug. Some side effects happen if the dose is too high, and might go away if the dose is lowered. And some side effects happen after a drug has been taken for many years. The importance of side effects vary from one person to another. For example some people are concerned about weight gain with some AEDs, and AEDs that might cause menstrual problems will not be a problem for men.

If you feel that you are experiencing side effects, you can talk about this to your GP or specialist. If you have a skin rash, it might mean that you are allergic to the AED and it is important to see your doctor straight away.
More information on medication for adults
More information on medication for children

How long will I have to continue to take my medication?
How long someone needs to take anti-epileptic drugs (AEDs) varies. Most people continue to take AEDs for as long as they have seizures. Or if the AED is stopping all their seizures, they may continue for as long as they have a tendency to have seizures, which means that if the medication is stopped their seizures will come back.

If you stay seizure free for a couple of years, your neurologist may suggest trying to come off your AEDs. But this is your choice. There is a possibility that if you stop your AEDs you might have seizures again. But often the only way to know is to try coming off the AEDs to see what happens. Some people prefer to keep taking their AEDs, rather than risk having seizures again. It is a good idea to talk to your neurologist before coming off your AEDs, so that you can plan how to gradually reduce the AEDs. Stopping AEDs quickly can result in seizures happening.
More information on medication for adults
More information on medication for children

My 13 year old daughter's behaviour has become more difficult since she was diagnosed with epilepsy last year. Is this due to the medication?
Having a diagnosis of epilepsy can be a huge thing, and often results in a whole range of different emotions. How people react to their diagnosis varies. Some people talk about it and others don't. Some people quickly come to terms with having epilepsy and others find it harder to accept. Sometimes people show how they are feeling in their behaviour, rather than talking about it. There might be many reasons why your daughter's behaviour has changed.

Could it be that it is her way of reacting to her diagnosis?
Is she concerned about having epilepsy or having seizures?
Is her medication causing her to feel unwell?
Do her friends and teachers know she has epilepsy, and are they supporting her?
Is she concerned about her schoolwork?
Could it be a change that would have occurred whether she had epilepsy or not?

Whatever the reason, it might be helpful to discuss your concerns with your daughter, her GP or paediatrician.
More information on epilepsy and children

I am finding it harder to remember things since I developed epilepsy. Why is this?
Some people find that having epilepsy can cause difficulties with their memory, and there are many reasons why this might happen.

Having seizures could affect someone's memory, depending on the type of seizures they have. Some seizures happen in particular parts of the brain that are responsible for particular types of memory, and so seizures can then affect memory.

Some people have memory problems during a seizure because they become unconscious or are only partly aware of what is happening, or are confused for a while after a seizure. Or seizures can break up someone's train of thought, and they might not remember what they were doing before the seizure happened. Some people might have memory problems because of the medication they take for epilepsy, which could cause drowsiness and make it harder for people to learn or remember things.

If you think your memory difficulties are related to your epilepsy, your GP or specialist may be able to refer you to someone, usually a psychologist, to assess your memory and help you find ways to manage the difficulties you are having.
More information on memory

Will the drugs I take mean it's harder for me to have children?
Some women with epilepsy take anti-epileptic drugs (AEDs) that affect their periods, which could make conceiving difficult. And some AEDs may affect a man's ability to produce sperm. However, this does not necessarily mean that people with epilepsy are unable to have children, but it might mean that talking through this issue with your specialist might be helpful to identify any changes to your treatment that would be useful.
More information on pregnancy and parenting

I am thinking about starting a family - will the drugs I take affect my baby?
Most women with epilepsy have normal pregnancies and healthy babies. But some anti-epileptic drugs (AEDs) can affect an unborn baby. How likely this is to happen, and what the effects might be, really depends on which AED you are taking and how much.

If you are concerned about the possible effect of AEDs, you might find that asking your specialist for preconception counselling would be helpful. This involves reviewing your epilepsy and what AEDs you are taking, looking at the potential effect on a baby and what might help reduce any risks.

For men with epilepsy taking AEDs, his epilepsy and medication will not affect an unborn baby.
More informaton on pregnancy and parenting

I have had seizures for many years and the drugs do not help. Could surgery help?
Epilepsy surgery involves removing the part of the brain that causes seizures. Whether or not this is possible depends on several things. Surgery is only possible if your seizures happen in one particular part of your brain - partial seizures - and that this exact part of the brain can be identified. It also depends on whether the part of your brain causing your seizures can be removed safely. There would be lots of tests that you would have done if your doctors thought surgery was possible. You could talk about this with your neurologist to see if this is possible for you.
More information on surgery

Would complementary treatments help my epilepsy?
The main treatment for epilepsy is anti-epileptic drugs (AEDs). Up to 70% of people with epilepsy will have their seizures controlled with AEDs.

There is very little information available about epilepsy and complementary therapies. This is because there has been very little research into complementary therapies in people with epilepsy. However, there are some types of complementary therapies that are best avoided if you have epilepsy.

Some people find that complementary therapies help them to relax, which might help with their epilepsy. But before starting any complementary therapies it is worth talking this through with your GP or specialist, and consulting a qualified practitioner of that therapy.
More information on complementary therapies

How long do I have to give up my driving licence for if I have only minor seizures and do not lose consciousness?
The DVLA (Driver and Vehicle Licensing Agency) regulations are very strict. They say that if someone has had a seizure of any type they have to stop driving. This includes all types of seizure, whether consciousness is lost or not. Although you may have only have had "small seizures" it would be very difficult to prove that you didn't lose consciousness. Although this might sound quite harsh, the reason for this is to ensure the safety of everyone on the road.

To be able to drive a car again you have to be free of all seizures for one year. The regulations are slightly different for driving a larger vehicle, such as buses or lorries, or if you only have nocturnal or sleep-related seizures.
More information on driving

Will my car insurance cost more because of my epilepsy?
If the DVLA (Driver and Vehicle Licensing Agency) has said you can drive - you meet all their criteria to drive - then they consider you are safe to drive. This means that should be no reason why insurance companies should charge you more for insurance just because you had seizures. However, insurance companies base their quotes on your individual circumstances and are allowed to ask you for further details about your epilepsy, which might include asking for a copy of a letter from the DVLA, before giving you a quote. If you're looking for driving insurance, it is often worth talking to a few different companies to see who can offer you the best quote.
More information on driving

I have just been diagnosed with epilepsy. Will I be able to get and keep a job?
Most people with epilepsy can do the jobs they want to, but this depends on a couple of things.

Firstly it depends on the job. Most jobs are open to people with epilepsy. The exception to this is jobs in the armed services. Apart from the armed services, all employers have to comply with the Disability Discrimination Act (DDA). The DDA says that someone cannot be treated unfairly just because they have a disability. This means an employer cannot refuse to employ you just because you have epilepsy.

Secondly, it depends on your epilepsy. When looking at the job you would like to do, is there anything about your epilepsy that would make doing the job risky? For example, if you have seizures in which you lose consciousness, working at heights would be too risky so certain jobs in the building trade might not be possible. If your seizures are controlled, then you may be at no more risk doing certain jobs than someone who doesn't have epilepsy.
More information on employment

My employer fired me when I had a seizure at work. What can I do?
The Disability Discrimination Act (DDA) exists to make sure that people with a disability are not treated unfairly compared to a person without a disability, just because of their disability and without a good reason.

If your employers know that you have epilepsy they need to find out if there is anything about your job that could put you, your colleagues or your clients at risk if you have a seizure. They then need to look at how any risks due to your seizures can be reduced. This is called making reasonable adjustments, so that you are not put at any disadvantage compared to your colleagues. If you have a seizure at work, then rather than just dismissing you, your employer needs to consider what other options are available to keep you at work. This might mean moving you to a different job until any risks due to your epilepsy can be reduced.

There are many organisations that can help give you further information about the DDA and what you can do.
More information on employment and the DDA

Do I have to tell anyone that I have epilepsy?
Because of the Disability Discrimination Act (DDA), people with epilepsy do not have to tell anyone that they have epilepsy unless they want to.* So it is your choice who you tell, how you tell them and when you tell them.

Perhaps it is worth considering who do you want to tell? It might be useful to tell people who you spend time with, so that they know how to help you if you have a seizure? When it comes to employment, there are some reasons why it is useful to tell your employers you have epilepsy. For example, so that they can help you if you have seizures, and so they can make reasonable adjustments to your working environment to make it safer for you if you have a seizure.

* An exception to this is if you drive a car - you do need to tell the DVLA (Driver and Vehicle Licensing Agency) if you have or have had seizures.
More information on employment
More information on driving

Can I get any financial help?
There are several areas where people with epilepsy may be able to get financial help. Some people with epilepsy are able to receive benefits. However having epilepsy doesn't mean that you are automatically eligible for benefits - it will depend on how epilepsy affects you. If you can't drive because you have epilepsy, you are eligible for some discounted travel schemes such as a disabled person's railcard. And people with epilepsy are able to receive their prescriptions free of charge.
More information on financial and other sources of help

Do I have to register as disabled?
Since the Disability Discrimination Act (DDA) was introduced in 1995 there has been no disability register. The DDA also means that people with a disability do not have to tell anyone that they have a disability.

UK Epilepsy Helpline: 01494 601400
Monday - Friday 10am - 4pm

For details about the source of our epilepsy information, see our website policy.

National Society for Epilepsy
June 2006

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NSE is the largest medical charity for epilepsy in the UK. We provide information and support to professionals and people affected by epilepsy. We also provide care for people with epilepsy through medical, residential and rehabilitation services.

Information leaflets: Frequently asked questions

Epilepsy and diagnosis

Seizures

Leisure and other activities

Inheritance and vaccination

Treatment of epilepsy

Driving

Employment

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