Get to know epilepsy well

Dr. Christopher Smith
63 min readOct 18, 2021

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  • If you or a loved one is living with epilepsy, you’ve probably spent a lot of time researching the condition and trying to understand the most essential information about its causes, symptoms, and progression. But even the most detail-oriented researchers may not know every fact about epilepsy, because the disease has so many variables.

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More Than 40 Types of Seizures Exist

Not everyone with epilepsy experiences the same types of seizures — in fact, there are actually more than 40 different kinds of seizures.

Some people experiencing a seizure may look as though they’re staring blankly into space (called an absence seizure). Others may wander and experience confusion (such as in complex focal seizures). Some might fall down and shake (such as in tonic-clonic seizures).

A person with epilepsy can experience multiple types of seizures within their lifetime.

Flashing Lights Trigger a Small Fraction of Epileptic Seizures

Flashing lights can trigger epileptic seizure activity in approximately 3 percent of people with epilepsy. The condition, known as photosensitive epilepsy, can also be caused by exposure to certain types of visual patterns. Most commonly, it’s found in younger people, and the frequency of seizures decreases with age.

Other elements of light that can potentially trigger seizures in people with epilepsy included its brightness, contrast to the background, frequency of flashes, and wavelength.

Fact 3: Seizure-Detecting Dogs Can’t Always Warn Humans Ahead of Time

You may hear or read conflicting information about the potential capabilities of seizure-detecting dogs. Although some media sources suggest that trained dogs can dependably warn humans about oncoming seizures, that’s not necessarily the case.

Research shows that dogs can detect seizures before they happen because of a smell that humans can’t sense. However, dogs cannot be trained to warn humans about every oncoming seizure. Despite this, trained dogs can still be incredibly helpful for many people living with epilepsy, because they can assist during and after seizures. Additionally, although some dogs may sometimes exhibit behaviors to warn you about an imminent seizure, there is no guarantee they will do so every time.

There are several wearables which are being used to detect epilepsy and a quick artificial intelligence revolution is underway, which will transform the lives of epileptic patients.

Fact 4: There Is No Singular Test To Diagnose Epilepsy

There is no one test that a doctor can use to determine definitively whether or not someone has epilepsy. Instead, doctors rely on a full picture of your medical history to determine whether or not your signs and symptoms could be related to the condition.

Typically, a doctor will look at your current signs and symptoms and your medical history in conjunction with some tests, including neurological exams, blood tests, electroencephalograms (EEGs), and other types of brain scans — such as MRI, CT, positron emission tomography (PET), or magnetoencephalography.

Fact 5: Some Children Will Become Seizure-Free Without Medication

Not everyone who develops epilepsy will experience seizures throughout their life. There is a 70 percent chance that a child who gets tonic-clonic seizures (also known as convulsive seizures) but has a normal EEG scan will stop having seizures without the help of any medication. It’s more likely that this will happen if their seizures are generalized, rather than starting on one side of the brain.

For a child who gets tonic-clonic seizures and who presents abnormalities in brain exams, the chance of being seizure-free without the help of medicine is reduced to 30 percent.

Talk With Others Who Understand

Let us go in a bit more depth, so you know more about epilepsy.

  • Most seizures happen suddenly without warning, last a short time (a few seconds or minutes) and stop by themselves.
  • Seizures can be different for each person.
  • Just knowing that someone has epilepsy does not tell you what their epilepsy is like, or what seizures they have.
  • Calling seizures ‘major’ or ‘minor’ does not tell you what happens to the person during the seizure. The names of seizures used on this page describe what happens during the seizure.
  • Some people have more than one type of seizure, or their seizures may not fit clearly into the types described on this page. But even if someone’s seizures are unique, they usually follow the same pattern each time they happen.
  • Not all seizures involve jerking or shaking movements. Some people seem vacant, wander around or are confused during a seizure.
  • Some people have seizures when they are awake, called ‘awake seizures’. Some people have seizures while they are asleep, called ‘asleep seizures’ (or ‘nocturnal seizures’). The names ‘awake’ and ‘asleep’ do not explain the type of seizures, only when they happen.
  • Injuries can happen during seizures, but many people don’t hurt themselves and don’t need to go to hospital or see a doctor.

About epilepsy and seizures

  • Epilepsy is a neurological condition — which means it affects the brain. It is also a physical condition, because the body is affected when someone has a seizure.
  • Epilepsy is described as the tendency to have repeated seizures that start in the brain. Epilepsy is usually only diagnosed after the person has had more than one seizure.
  • The Greek philosopher Hippocrates (460–377 BC) was the first person to think that epilepsy starts in the brain.
  • Anyone can have a seizure if the circumstances are right, but most people do not have seizures under ‘normal conditions’.
  • Seizures used to be called ‘fits’ or ‘attacks’. Seizures happen when there is a sudden interruption in the way the brain normally works. In between seizures the brain functions normally.
  • Epilepsy is a variable condition that affects different people in different ways.
  • There are over 40 different types of seizure. What seizures look like can vary. For example someone may go ‘blank’ for a couple of seconds, they may wander around and be quite confused, or they may fall to the ground and shake. So not all seizures involve shaking.
  • Some people are unconscious during their seizures and so they do not remember what happens to them. It can be really useful to have a description of what happened from someone who saw their seizure to help with diagnosis. This is sometimes called an ‘eyewitness account’.
  • Different epilepsies are due to many different underlying causes. The causes can be complex, and sometimes hard to identify. Sometimes a cause for epilepsy can be found (for example a person may start having seizures due to a brain injury) or there may be a genetic tendency. Some researchers now believe that the chance of developing epilepsy is probably always genetic to some extent.

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Epilepsy statistics

  • One in 20 people will have a one-off epileptic seizure at some point in their life (although this does not necessarily mean that they have epilepsy).
  • One in 50 people will have epilepsy at some time in their life (not everyone with epilepsy will have it for life).
  • Around 87 people are diagnosed with epilepsy every day.
  • Over 600,000 people in the UK have epilepsy. That’s about one in every 100 people. There are around 60 million people with epilepsy in the world.
  • Up to 3% of people with epilepsy will be affected by flashing lights (called photosensitive epilepsy), so most people with epilepsy do not have seizures triggered by flashing lights.

Did you know?

Did you know that Saint Valentine is the patron saint of people with epilepsy? Some famous people who have had epilepsy include the Roman Emperor Julius Caesar and the artist Vincent Van Gogh. More recently the actor Danny Glover, singers Prince and Susan Boyle and rugby player Dean Ryan.

Diagnosis and treatment

  • Epilepsy can start at any age, but is most commonly diagnosed in people under 20 and people over 65. This is because some causes are more common in young people (such as difficulties at their birth, childhood infections or accidents) and in older people (such as strokes that lead to epilepsy). For some people their epilepsy might ‘go away’ and they stop having seizures. This is called spontaneous remission.
  • Epilepsy can be difficult to diagnose and there are a number of different tests that might be done to help with a diagnosis such as an Electroencephalogram (EEG) or a Magnetic Resonance Imaging (MRI) scan.
  • Epilepsy is usually treated with medication called anti-epileptic drugs (AEDs). AEDs aim to stop seizures from happening, but they do not cure epilepsy.
  • With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled (stopped).
  • The first AED used to treat epilepsy was phenobarbitone in 1912. There are now over 28 different AEDs available in the UK.
  • For people who do not have their seizures controlled with AEDs, surgery may be an option. This can involve removing the part of their brain that causes the seizures.

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If you have had two or more seizures that started in the brain you may be diagnosed with epilepsy.

If there is a possibility that you have epilepsy, NICE recommends that you are referred to a specialist, (a doctor who is trained in diagnosing and treating epilepsy) within two weeks.

Your diagnosis is based on finding out what happened to you before, during and after your seizures. For example, some types of faints can look like epileptic seizures, and often before fainting a person feels cold, clammy and their vision goes blurry. But epileptic seizures happen very suddenly and a person may have no warning that a seizure is about to happen.

Tests for epilepsy

Blood tests, an Electroencephalogram (EEG) and scans are used to gather information for a diagnosis. Tests on their own cannot confirm or rule out epilepsy.

Reasons for tests

Your neurologist or specialist may ask you to have some tests to get extra information about your seizures. The tests are usually done by a technician (a person who is trained to do them).

The results from the tests are then passed back to the neurologist to see what they show. The results may indicate that you have epilepsy and may also show a cause for your epilepsy.

No test can say for certain whether you do or do not have epilepsy. But when information from the tests is added to the description of what happens during your seizures, this builds up a clearer picture of what happened. This can help with the diagnosis and when choosing treatment.

There are a number of tests that can help rule out other causes. These include:

Blood tests

A sample of blood will usually be taken from your arm with a syringe. The sample is used to check your general health and to rule out other possible causes for your seizures, such as low blood sugar levels or diabetes.

Electrocardiogram (ECG)

An ECG is used to record the electrical activity of the heart. This is done by sticking electrodes (a bit like plasters) to the arms, legs and chest. These electrodes pick up the electrical signals from the heart.

An ECG does not give out electrical signals, so having one doesn’t hurt. An ECG can help to rule out the seizure being caused by the way the heart is working.

Brain scans

A brain scan may help to find the cause of your seizures. The two common types of brain scan are Magnetic Resonance Imaging (MRI) and Computerised Axial Tomography (CT or CAT).

EEG

When someone has had seizures, and it is thought that they might have epilepsy, there are various tests that their specialist might ask for. Two of these tests are the electroencephalogram (EEG) and MRI.

Not all seizures are due to epilepsy. There are other medical conditions that might cause someone to have a seizure for example, diabetes. The difference between epileptic seizures and other seizures is that epileptic seizures are caused by a disruption in the way the brain is working. The fact that epileptic seizures always start in the brain is important when considering the EEG. An EEG looks at what is happening in the brain — the activity of the brain cells. It does not look at the structure of the brain (how the brain is made up).

‘Brain waves’ and electrical signals

Brain cells (neurones) work by sending nerve impulses from one cell to another to transfer messages around the brain and the body. These messages, called action potentials, happen due to changes in the electrical charge of the cells. So when the brain is ‘working’ cells communicate using electrical signals, and when they do this they ‘give off’ electricity. It is this electrical activity, sometimes called ‘brain waves’, that is picked up on by EEG.

The electrical signals from the brain are picked up by small electrodes (about one centimetre across), which are placed on the person’s head. The electrodes only record the electrical activity of the brain; they do not give out electricity. The electrodes cannot pick up the electrical signals from individual neurones — the cells are far too small and the electrical charge is also too small. Instead, they record the electrical activity from small areas of the brain. The EEG shows brain function, and looks for the presence or absence of specific brain activity in specific areas of the brain. The EEG cannot interpret what the messages are ‘saying’ (or what you are thinking!), only that brain activity is happening.

Because the electrical signals are still quite small, they are amplified (made stronger) so that they can be recorded. The activity is recorded on an electroencephalograph (recording machine) either on paper or more usually on computer.

Neurones — the scientific name for nerve cells. The brain is made up of millions of neurones. Neurones control all of the body’s functions by communicating using electrical signals.

The 10–20 system

When someone has an EEG, a number of electrodes are used (usually 25–30). These electrodes are put in specific positions on the person’s head, which means that different electrodes can record the activity from different and known areas of the brain. When the technician or doctor is looking at the results of the EEG, they can tell what brain activity is happening, and in which particular part of the brain it is happening in.

To work out where to put the electrodes, a special arrangement called the 10–20 system is used. Each electrode is put either 10 or 20 per cent of the total distance between specific points on the head, done by measuring the person’s head and marking the position with a soft pencil. Each electrode has a number; all the odd numbers are on the left side of the head, and the even numbers on the right. The electrodes also have a letter, depending on the area of brain that it is recording from: F for frontal lobe, T for temporal lobe, P for parietal and O for occipital lobes. The letter Z is used for the line of electrodes sited on the midline of the head.

Frontal lobes — the area at the front of the brain, behind the forehead. The frontal lobes are responsible for voluntary movement (movement you decide you want to do, for example, walking and talking), conscious thought (for example, deciding you want a cup of tea), learning, speech and your personality.

Temporal lobes — the areas of the brain at the side of the head, above your ears. The temporal lobes are responsible for making memories and remembering, and emotions (such as feeling happy or sad). They are also involved in speech, hearing and perception (how we see the world around us).

Parietal lobes — the area of the brain at the top of your head behind your frontal lobes. The parietal lobes control how we feel and understand sensations. They also control how we judge spatial relationships (such as the distance between two objects), our coordination and our ability to read, write and do maths.

Occipital lobes — the area at the back of the brain: at the back of your head. The occipital lobes are responsible for our sense of sight: receiving information from our eyes and translating it into what we see around us.

What do the readings show?

The EEG records the electrical activity of the brain. The type of brain activity that happens depends on many different things: if the person is awake or in different stages of sleep, what they are doing, and if their eyes are open or closed. Some activity seen in ‘well’ children, would not be expected to be seen in healthy adults.

What’s in a wave?

The EEG recording shows different types of brain waves. A wave is any type of brain activity, which appears as a ‘wave’ shape on the EEG recording. There are different names for the brain waves which are put into bands according to their frequency or number of ‘waves’ per second (see below), and each type of wave looks different on the EEG. Some brain waves happen at particular times or in different areas of the brain.

  • Alpha waves are at a frequency of 8–13 waves per second, and are the typical waves seen in adults who are relaxed with their eyes closed. These waves are clearest in the occipital lobes (the part of the brain responsible for our sight and seeing).
  • Beta waves are at frequencies greater than 13 per second. These are often seen in people who are awake, with their eyes open or closed. They are often seen in the frontal lobes (responsible for conscious thought and movement) and in central areas of the brain.
  • Theta waves happen between the frequencies of 4–7 waves per second, and are also called slow activity. Theta waves occur during sleep and in young children. They are not obvious in adults who are awake.
  • Delta waves are at frequencies up to 4 waves per second. These are the slowest type of wave but have the highest amplitude (strongest signal). Delta waves are common in children under one year. They also happen during some parts of sleep.
  • Gamma waves are at frequencies of 26–100 waves per second.
  • Spikes are very fast waves and are called spikes because of their shape on the EEG. Each lasts less than 80 milliseconds (less than 1/12th of a second) and may be followed by slow delta waves. Spikes clearly stand out from other brain activity on the EEG.
  • Polyspikes are a series of spikes that happen quickly.
  • Spike waves happen when one or more brief spikes are followed by a slow wave, and this happens three times per second.
  • Sharp waves happen over 80–200 milliseconds.

What does it all mean?

So EEGs show what is happening in the brain during the test, but why is this helpful in epilepsy? Epileptic seizures are caused by disturbed brain activity — which simply means that the normal activity of the brain (and therefore the normal EEG reading) is suddenly interrupted and changes. When a seizure happens during an EEG, the normal pattern of brain activity that is seen on the EEG reading changes, and different brain activity can be seen.

In focal seizures the change in brain activity can be seen only on the electrodes on the part of the brain the seizure is happening in. The readings from the rest of the electrodes remain the same as ‘normal’ brain activity (when a seizure is not happening). In generalised seizures the altered activity can be picked up by all the electrodes, from all parts of the brain.

Focal seizures — (previously called partial seizures). These are seizures that happen in, and affect, only part of the brain (not both sides of the brain) and start from a ‘focal point’ in the brain. What happens in these seizures varies depending on which part of the brain is affected and what that part of the brain normally does.

Generalised seizures — seizures that happen in, and affect, both sides of the brain from the start. There are many different types of generalised seizures but they all involve the person becoming unconscious, even just for a few seconds, and they won’t remember the seizure itself. The most well-known generalised seizure is the tonic clonic (convulsive) seizure.

Sounds simple doesn’t it?

Although this all sounds simple, it is not quite so easy! Usually when someone has a seizure, the seizure does not cause a typical pattern on the EEG, it just causes a change in the EEG (although there are some types of epilepsy that have typical EEG patterns associated with them). This means that sometimes the EEG is described as ‘abnormal’ (that is ‘not normal’ brain activity) but does not ‘prove’ that the person has epilepsy.

To complicate this further, some people have ‘abnormal’ EEGs but do not have epilepsy. Also, many people who do have epilepsy will only have ‘abnormal’ activity on the EEG if they have a seizure at the time the test is happening.

This is why having an EEG cannot diagnose epilepsy, and why EEGs are used alongside other tests and investigations.

MRI

An MRI scan will not say for certain whether the person has epilepsy or not. But alongside other information, these might help the specialist to decide if epilepsy is a likely cause of the seizures.

An MRI scan looks at the structure of the brain and may help to find the cause of your epilepsy. During the scan, detailed pictures are produced using strong magnetic fields. Because of the magnetic fields, metal objects in or near the machine can affect, or be affected by, the machine.

Before having an MRI scan you will need to remove any metal objects such as jewellery, hearing aids, coins or keys. If you have a heart pacemaker or any surgical implant that contains metal you may not be able to have an MRI scan.

The scanner makes a loud knocking noise, so before it starts you will be given earplugs to wear. You will also be given a buzzer to hold so you can let the technician know if you are uncomfortable or feeling unwell during the scan.

The technician is usually on the other side of a window in another room during the scan. There is an intercom so you can talk to them and a mirror so you can see them. You may be able to have someone in the room with you during the scan.

Having an MRI scan to help diagnose epilepsy usually takes about 30 minutes. During the scan you will lie on a platform which slides into the scanner (a bit like going into a tunnel).

It is important to lie still during the scan so that the machine can take clear pictures of your brain. An MRI scan is usually a series of short scans with breaks in between, rather than one long scan. Between each scan the technician might use the intercom to check that you are ok.

Computerised axial tomography (CT or CAT scan)

Some people may have a CT scan if they are not able to have an MRI scan. This might be because they have a heart pacemaker, if they might need to have an anaesthetic to have an MRI or if information about what might be causing their seizures is needed quickly.

CT scans use X-rays to take images of the brain. (CT scans are not suitable if you are pregnant because the X-rays could affect an unborn baby).

Images from a CT scan are less detailed than those from MRI scans. During a CT scan you lie on a couch which slides into the scanner. Unlike MRI scanners, CT scanners do not make a loud noise.

What treatment options are there?

Epilepsy is sometimes referred to as a long-term condition, as people often live with it for many years, or for life. Although generally epilepsy cannot be ‘cured’, for most people, seizures can be ‘controlled’ (stopped) so that epilepsy has little or no impact on their lives. So treatment is often about managing seizures in the long-term.

Most people with epilepsy take anti-epileptic drugs (AEDs) to stop their seizures from happening. However, there are other treatment options for people whose seizures are not controlled by anti-epileptic drugs (AEDs).

Medication for epilepsy

The aim of treatment is to stop all of your seizures with the lowest dose of the fewest number of AEDs and with the least side effects. Usually treatment starts using a single AED at a low dose, which is increased slowly (called titration), until your seizures are controlled. If your seizures are not controlled with this drug, a different AED is usually tried (by adding in the new drug and then slowly withdrawing the first one). If your seizures are not controlled with a single drug, another drug might be added, so that you take two different AEDs each day.

Anti-epileptic drugs (AEDs) are the main type of treatment for most people with epilepsy. Up to 70% (7 in 10) of people could stop having seizures with the right medication. AEDs are a type of medication that aims to stop seizures from happening. They do not stop a seizure once it has started and they cannot cure epilepsy.

Some medications are taken as a ‘course of treatment’ to cure a condition (for example, taking a course of antibiotics for an infection). AEDs are different; they are a preventative medication taken every day to try and stop seizures from happening. They do this by reducing the excessive electrical activity in the brain that causes seizures. The way they work is not completely understood, and it is likely that different AEDs work in slightly different ways.

What is the aim of treatment with AEDs?

The aim of treatment is ‘optimal therapy’. This means taking the fewest types of AEDs, at the lowest dose in order to get the best seizure control possible with the fewest side effects. If optimal therapy cannot be found with one particular AED there are usually several others that can be tried, alone or in combination.

How are AEDs chosen?

There are over 20 AEDs and each has a particular type or types of seizures that it works for. The choice of AED firstly depends on the type of seizures you have, and which AED works for these seizures.

When a drug is chosen, your specialist will take into account any other conditions you have or medication you take. As you may be on drugs for a number of years, they will consider not just what is right for you right now but also for the future. For example, when a girl is first prescribed AEDs they will think about when she becomes an adult and may want to start a family.

Some AEDs can affect an unborn baby while it is developing and so these drugs are usually avoided for girls and women who may become pregnant.

Although AED recommendations are largely the same for men, women and children, there are some reasons why a particular AED might be chosen or avoided for a particular person. This may be due to possible side effects. For example, some AEDs can affect concentration more than others so they might be avoided for a student at school or college.

You are entitled to free prescriptions for your AEDs and any other prescribed medication. To apply for free prescriptions in England you need to fill in a FP92A form (from your GP surgery or pharmacy). In Scotland, Wales and Northern Ireland all prescriptions are free for everyone.

Treatment is usually started with a first line AED. This is an AED that is tried first and taken on its own, sometimes called monotherapy. Once the most appropriate AED for you has been identified and discussed with you, you will usually start on a very low dose. This helps your body get used to the medication, and makes side effects less likely. The dose is then increased slowly over a number of weeks until it stops your seizures. The right dose for you may be different to what is right for someone else and is sometimes referred to as your ‘individual therapeutic concentration’.

How the body absorbs, uses and removes medication changes with age. For children, AED doses are based on their body weight and so the dose increases as they get older (up to around 12 years of age). For adults, doses are not based on body weight.

For most people, once the right AED for them is found, it will stop their seizures. Although for some people it can take time to get this right, the aim is to stop your seizures by just taking one AED. However, if your seizures do not stop when the dose is increased, or you start to have side effects, you may want to talk to your doctor about changing to a different AED. Because different AEDs work in different ways, if one does not control your seizures it doesn’t mean that other AEDs won’t work. If you change from one AED to another, the second AED is usually added and slowly increased to a dose which is likely to work, and the original drug is slowly reduced.

If your seizures are not controlled with a single AED you may take a combination of AEDs. This is called polytherapy. Some AEDs added to a first line AED are called second line AEDs. This is slightly different for children because AEDs are not split into first and second line for treating children age 12 and under.

Some people continue to have seizures despite taking AEDs. In this case they may continue to take AEDs to reduce their seizures as much as possible and consider trying other types of treatment.

What if medication doesn’t work for me?

Most people’s seizures are controlled with medication. That is why medication is usually the type of treatment that is tried first. But if medication doesn’t stop all your seizures, or only stops some of them, there are other types of treatment that might be considered. This might be instead of, or alongside AEDs. Rather than waiting until you have tried lots of different AEDs, your specialist might talk to you about alternatives if two or three AEDs have not worked for you.

For example, someone may be considered for epilepsy surgery, VNS (vagus nerve stimulation) therapy, specialist medical dietary treatments (such as the ketogenic diet which is particularly for children) or deep brain stimulation.

Some people consider using complementary therapies alongside AEDs. Most complementary therapies are not used to treat epilepsy but some people find them useful to manage stress, or feel more in control of their life.

If your seizures are not controlled with medication, your specialist may want to review your diagnosis to check that it is correct, to confirm the type of epilepsy or seizures you have, and to review the treatment you have had so far. They may refer you to a tertiary service (a specialist hospital or unit the focuses on specific care for different conditions) if they feel that more specialist treatment would be appropriate for you.

Who will be involved with my epilepsy care?

If you or your child have been diagnosed with epilepsy, it is likely that you will have seen a neurologist, or a paediatrician or paediatric neurologist. You may already have discussed treatment options with them. They will usually prescribe your AEDs and arrange follow-up appointments to see how you are getting on.

Where we refer to a ‘specialist’ this means a neurologist for adults and a paediatrician for children. Once a child reaches around 16 to 18 years of age they will usually change from seeing a paediatrician to a neurologist. This is called ‘transition’.

The day-to-day management of your epilepsy might be under the care of your GP. For example, they might organise your prescriptions. They should also have a copy of your treatment plan so you can talk to them about how you get on.

You might also see an epilepsy specialist nurse (ESN). ESNs work alongside the specialist and GP to help you manage your epilepsy. Not all hospitals have an ESN but you can ask about this at your local hospital.

In the longer term, if your seizures become controlled, you might only see your GP to review your epilepsy each year.

How to ensure you are prescribed the same drug:

  • Ask your doctor to prescribe by brand name so the pharmacist has to give you that version.
  • If your doctor writes the generic name of the AED on your prescription, ask them to add the name of the specific drug company.
  • Try to go to the same pharmacist each time as they may have a record of your AEDs and may ensure that you receive the same version.
  • Check your AEDs while you are still at the pharmacy. If they are different to the ones you usually take, discuss this with your pharmacist. If you have a smartphone you could use our free smartphone app to photograph your AEDs and show them to your pharmacist.

How anti-epileptic drugs work

For most people with epilepsy, the treatment for their seizures includes anti-epileptic drugs (AEDs). But what do these drugs do? Here we look in greater technical detail at how AEDs work, what they do, and what they don’t do

What do they do (and what don’t they do)?

AEDs do not cure epilepsy or treat the reason why epilepsy has started. They are taken to try and stop the symptoms of epilepsy — the seizures. They aim to stop seizures from happening. Except for emergency medication, most AEDs do not stop a seizure once it has started.

How AEDs get to the brain

To work, drugs need to get from where you take them to where they start to work. They need a route to get there and a waste-removal system to get rid of them afterwards.

The route of administration

There are various ways medications are taken — by mouth, by injection (into the vein, muscle, or just under the skin), or by suppository (into the bottom). AEDs are usually taken orally (by mouth), and in the form of tablets, capsules, liquids and syrups.

Absorption in the stomach

Once swallowed, AEDs go into the stomach. Digestive juices in the stomach help to break down food and, in this case, the tablets containing the medication.

The tablets break down, releasing the medication which can then pass through the wall of the gut into the bloodstream (absorption), and be distributed around the body. The quicker the medicine gets into the bloodstream the quicker it can get to work.

Once the medication is absorbed it can act and do the job it is supposed to.

Once in the bloodstream, AEDs are carried to the site of action: in this case, the brain.

How well and quickly the drugs get to their site of action depends on how well the part of the body is supplied with blood, and how easily the drug gets from the blood stream into the part of the body.

Although the brain has a good supply of blood, there is a barrier between the blood and the brain that helps protect the brain from infections and toxic chemicals. This means that drugs do not pass easily into the brain.

Once drugs have played their active role, they start to break down (metabolise) so that they can be excreted from the body (passed out through the digestive tract, like food and drink, or in the urine). How long before AEDs start to be metabolised varies from one to another and is referred to as their half-life.

To be excreted in the urine, AEDs have to be broken down so that they can dissolve in water, and then the kidneys can get rid of them. Some AEDs become inactive when they are metabolised.

Most AEDs are metabolised in the liver (hepatic metabolism) where they are changed into water-soluble metabolites with the help of different enzymes. Some AEDs — gabapentin, vigabatrin, levetiracetam and pregabalin, are not metabolised, not affected by hepatic enzymes, and they are excreted in the same form in the urine.

How AEDs stop seizures?

AEDs make the brain less likely to have seizures by altering and reducing the excessive electrical activity (or excitability) of the neurones that normally cause a seizure. Different AEDs work in different ways and have different effects on the brain. How exactly some AEDs work is still not fully understood.

Targets in the brain

There are several different ways in which AEDs stop seizures from happening, by working on particular targets in the brain. AEDs may affect the neurotransmitters responsible for sending messages, or attach themselves to the surface of neurones and alter the activity of the cell by changing how ions (chemicals found in the body that have an electrical charge), flow into and out of the neurones.

See our information on Neurones.

We will look at four targets (although there are others):

  • sodium ion channels
  • calcium ion channels
  • the GABA system and receptor agonists
  • glutamate receptor antagonists.

Sodium ion channels

Sodium channels are the parts of the neurone that affect how electrical signals or messages are passed along the length of a neurone. ‘Action potentials’ are events that cause the cell membrane of the neurone to depolarize and repolarize (when the balance of ions inside and outside the neurone changes, which causes the electrical charge of the neurone to change). This is because they change the amount of ions inside and outside the cell, which then changes the electrical charge of the cell. This is how messages travel along a neurone”. Sodium channels affect how ‘excitable’ neurones are and how easily messages are sent from one brain cell to another.

Some AEDs (such as phenytoin, lamotrigine and carbamazepine) work by affecting the sodium channels of neurones. AEDs that bind or attach themselves to the sodium channels affect how ions flow through the channels, and stop the channel becoming activated or creating an action potential. This slows down how fast and how well the sodium channels work, which effectively stops the neurone from sending repeated messages.

Calcium ion channels

Calcium ions, like sodium ions, are involved in sending electrical messages through the brain. Calcium channels are particularly involved with sending a message from one neurone to another, by affecting the release of neurotransmitters (chemicals that help to send messages from one neurone to another) across the synapse, where two neurones meet, and by affecting the movement of calcium ions in the receiving neurone.

AEDs that target calcium channels (such as zonisamide and topiramate) work by blocking the calcium channels. This prevents messages being sent across the synapse from one neurone to another either by stopping the release of neurotransmitters, or by preventing calcium entering the second neurone.

One particular type of calcium channel, called the T-type channel, is involved in keeping the normal rhythm of brain activity. This channel is also involved in the specific brain activity that happens in absence seizures. AEDs that specifically target, and block, the T-type calcium channel (such as ethosuximide), work specifically on reducing absence seizures.

GABA system and receptor agonists

GABA (gamma amino butyric acid) is a type of inhibitory neurotransmitter in the brain, which effectively stops brain messages from continuing to be sent (switches messages off). GABA helps chloride ions pass into neurones, which affects the resting membrane potential of the cell and makes it difficult for the neurone to send messages.

AEDs that work on the GABA system and its receptors are agonists (a substance that helps another substance to work better), and effectively increase the movement of chloride into cells, and increase the ‘switching off’ of messages.

AEDs such as gabapentin work by increasing the production of GABA, and sodium valproate and vigabatrin work by decreasing the breakdown of GABA, both of which result in an increased amount of GABA.

AEDs such as benzodiazepines (including clonazepam and clobazam) increase how often GABA receptors open, and barbiturates (such as phenobarbitone) increase how long the receptors are open for, again affecting the release and movement of GABA.

Increasing the making of GABA, reducing its breakdown, and increasing its movement, all results in increases its inhibitory effect (more GABA means more prevention of messages being sent).

Glutamate receptor antagonists

Glutamate is a type of amino acid, and is a major excitatory neurotransmitter in the brain. Messages are sent from one neurone to another in excitation, due to the movement of sodium and calcium ions into cells, and potassium out of cells. This movement of ions through the cell membranes is helped by glutamate, which binds to different receptors on the cell membrane.

Drugs that bring about and prevent glutamate uptake (antagonists) stop glutamate from helping the movement of ions through the cell membrane and so prevent the spread of the messages from one neurone to another.

The AED perampanel works specifically on glutamate receptors, while some other AEDs (such as topiramate) work on glutamate receptors as well as other targets.

Different AEDs use different targets, or a combination of targets. For some it is known which targets they use, but for others it is not yet known.

List of anti-epileptic drugs

Generic names with brand names

Deciding to take anti-epileptic drugs (AEDs) can be a big decision, and you might have lots of questions about how the drugs work before you take that step.

How are drugs developed?

Drug companies research and develop drugs during a very long, complicated, and expensive process. Each step of the process is designed to make sure that the drug is safe for us to use, that it works, and that it can be produced in a way to make sure it is consistent.

Trials and testing

The first stage of developing drugs is to find a possible drug. Researchers look for chemical compounds, which might be similar to a drug that already exists, that they think might work for a particular condition.

Once a compound is found, the next stage is to trial it. This involves testing the compound to see if it does the job the researchers expect it to. The first trials might be computer tests. After this, the compound is tested on animals before it is tested on human volunteers. These trials happen in three phases and can take up to six years to complete. Strict guidelines and ethical standards make sure that drug trials are fair, accurate, thorough, and give enough information about the drug to know whether it works.

Tests include checking that the drug is safe by testing them on people who do not have the condition.

Some drug tests (or trials) are ‘double-blind randomised controlled’ trials. This means that, from a group of volunteers, half are chosen at random to take the drug and the other half take a placebo (a dummy drug that has no active ingredient in it). Placebos are used controls in drug trials to compare the effects of the real drug.

Randomly selecting who takes the drug and who takes the placebo means that the researchers cannot chose who they think will respond best to the drug or treat them differently to the volunteers taking the placebo.

In some drug trials, after a certain length of time, the drugs are ‘crossed over’ — the volunteers are switched from one treatment to the other. So if a volunteer was taking the placebo, they will be swapped on to the ‘real’ treatment and if they were taking the ‘real’ treatment, they will be swapped to the placebo.

The idea is to develop a drug that is as effective as possible with the least side effects. The benefits of taking the drugs are compared to the risk of side effects and the risks from not treating the condition. A drug would only be licensed if the benefits out-weigh the risks.

Licensing drugs

Once a drug is discovered, tested, works, and is safe, the next stage is to license it. Once a drug is licensed it can be prescribed and used. Drugs are licensed either by the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK, or the European Medicines Evaluation Agency (EMEA) in the European Union. Licensing can take two to three years.

Once a drug has been licensed it can be manufactured and appear in shops or pharmacies. Getting to this stage can take 12 years!

Sometimes drugs are prescribed ‘off licence’ or for something they do not have a licence for. For example, some AEDs are licensed for particular seizure types and not others. But the AED may be prescribed to someone who has seizures that it is not licensed for, if it is thought to be helpful.

Ethics

Drug trails have to be ethical (conform to what is morally right). Certain groups of people are not allowed to have drugs tested on them. This includes children, people aged 60 and over, and pregnant women.

The ways that drugs are handled by the body (absorbed and removed) in children, pregnant women, and older people can be different to adults in general. Once a drug has been licensed for adults, further tests are needed for these groups of people, testing first with older people and then with children.

New drugs will not normally be prescribed to pregnant women until they have been thoroughly tested in other groups. Once a pregnant woman is prescribed a new drug, she will be very closely monitored.

Patents

Like many inventions, new drugs are patented. This patent is the legal right the drug company has to be the only company to make that drug for a certain length of time (usually 20 years). During this time no other drug company can make it. Because developing a new drug costs so much, the company has time ‘on patent’ to try and recover some of these costs by selling their drug at a price that reflects the cost of development.

When the drug comes ‘off-patent’ (after the 20 years), other companies can make their own versions of the drug. These versions are called generic (see below). Because other companies have not had the cost of developing the drug from scratch, their versions can be cheaper than the original versions.

Types of drugs

There are many different AEDs. Some are brand versions, some are generic, some are first-line, and some are second-line (see below).

What do brand and generic mean?

AEDs often have two names: a brand (or trade) name and a generic name.

All drugs have an active ingredient. This is the chemical part of a drug that works on the body to control or treat a condition or disease. The generic name of a drug is the name of that active ingredient, and all drugs with the same active ingredient will have the same generic name. Generic names start with a lower case letter, such as sodium valproate and carbamazepine.

Some AEDs also have a brand name, given by the drug company that developed it, and this starts with a capital letter. For example, a brand name for sodium valproate is Epilim, and carbamazepine is Tegretol.

Some drugs have many brand names or are sold by different companies under the generic name. For example, sodium valproate may be sold as generic sodium valproate or branded Epilim, and carbamazepine as generic carbamazepine or branded Tegretol.

What are ‘first-line’ and ‘second-line’ AEDs?

AEDs are licensed for controlling particular types of seizures. ‘First-line’ and ‘second-line’ refers to how AEDs are selected and used.

First-line AEDs are usually considered first when starting epilepsy treatment. They tend to be used on their own (monotherapy). They include sodium valproate and carbamazepine. Which one is chosen depends on the type of seizures the person has.

Second-line AEDs are usually taken alongside first-line therapy as polytherapy (also called adjunctive therapy). They include topiramate and gabapentin. Second-line AEDs also include AEDs that were used as first-line treatments but that are no longer generally considered as a first treatment option when treatment is started.

However, as treatment with AEDs is always individualised, in some cases the neurologist may use their specialist knowledge and decide to put an individual on monotherapy with a second-line rather than first-line drug.

Neurologists often use monotherapy at the start of epilepsy treatment. Taking just one AED makes treatment simpler. There are no interactions with other drugs, it reduces the chance of getting side effects, and it is clear to see if the drug works or not. If a single AED does not stop your seizures the options are to try a different first-line drug, or to add-on a second drug.

Taking more than one drug (polytherapy) means that there may be different side effects from each of the different drugs. Your neurologist will have to consider which side effects may be from which drug. They will also need to be aware of possible interactions between the drugs, and, if your seizures become better controlled, may find it hard to see which drug is working best.

Old and new AEDs

AEDs can be divided into two groups according to when they where developed and how long they have been around for.

Newer drugs (licensed after 1989) include lamotrigine and topiramate. Older drugs (licensed before 1989) include phenytoin, and sodium valproate.

There are positives and negatives to each.

The positives and negatives about older drugs include:

  • Because they have been used over many years the longer-term benefits and side effects are better known
  • We know more about how they work and what seizures they are likely to work for
  • They are known to be very effective for some people (through many years of experience using them)
  • Some have serious side effects or interactions with other drugs.

The positives and negatives about newer drugs include:

  • They often have fewer side effects
  • They are less likely to interact with other drugs
  • They are more expensive (see section on licensing)
  • We don’t have the years of experience to know what types of seizures they work best for.

So the decision about which AEDs to choose is more complicated than their age alone.

Choosing AEDs depends on:

  • The type of seizures you have
  • The AED that is known to work best for that type of seizure
  • Your lifestyle. Some side effects are more important to some people than others. For example, a student may avoid an AED that affects their concentration.

Today, many doctors recognise that people know a lot about their medical condition and want to play a part in any decisions about treating it.

Weighing up the risks and benefits of taking, or not taking treatments, can include the following issues:

  • the possible risks of taking AEDs, including side effects
  • the possible benefits of taking AEDs, including stopping seizures
  • the possible risks of not taking AEDs, including continuing to have seizures (and accidents and injuries because of them)
  • the possible benefits of not taking AEDs, including not having side effects.

How important these risks and benefits are will vary from one person to another and will depend on individual circumstances. Ultimately the decision is yours, but having the input and support from your doctors can help you to weigh up these points and come to a decision that you are happy with. Taking part in making this choice may also help you to feel more in control.

How often should AEDs be taken each day?

How often you take an AED (once, twice or possibly three times each day) depends on its half-life. The half-life of a drug is the length of time it takes for the original amount of the drug to reduce by half. The half-life is used to measure the concentration of the drug in the blood, which is not exactly the same as the dose of drug you take.

When you take a drug it takes time to be absorbed into your blood. When it is in your blood the amount can be measured; this is expressed as the drug’s ‘concentration’ or ‘level’, which relates to how much of the active ingredient of the drug is available to work. Once the drug has done its work, it becomes metabolised (broken down) and eliminated (removed) from the body. In simple terms, when the drug reaches its half-life, half of it is still in the blood and half of it has been metabolised and eliminated.

What is the average dose range of an AED?

When considering how much medication someone takes the doctor will look at two different things. Firstly, their ‘average’ dose — this is a measure of the number of tablets they take and how much active ingredient each tablet contains. For example, for an adult an average dose range for carbamazepine is 600–2000mg per day. These figures are a very general guide. Some people may have their seizures controlled on a dose lower than the lowest dose or higher than the highest dose.

The second way of monitoring medication is to look at the amount of an AED in the blood and compare this to a reference range. The reference range is a range of concentrations of an AED within which most people will get a benefit from the drug.

Below the reference range the drug is unlikely to work whereas above it, toxic effects are likely to happen. Again, this is a general guide and not specific to an individual. By monitoring drug levels in an individual and seeing what amount of an AED gives them the best seizure control, it is possible to work out an individualised therapeutic range for them. This range will vary from one person to another but will often fall within the general reference range for that AED.

What is ‘blood-level testing’?

Blood-level testing, or therapeutic drug monitoring (TDM), is a system of monitoring the AED levels in an individual to help manage their epilepsy treatment.

TDM involves taking blood or saliva samples to measure the amount of the drug that is ‘available’ to work (its bioavailability). So this is a good way of measuring how much of the drug your body is getting.

When you increase a dose, how long does it take to work?

This varies from one AED to another and depends on the half-life of the drug. Generally, you can see the effect of an increase in five half-lives’ time, so if the half-life of the AED is 24 hours, you will see the effect five days (that is, 5 x 24 hours) later. If the half-life is 12 hours, you will see the effect two-and-a-half days (that is, 5 x 12 hours) later.

Side effects

One of the biggest concerns people have when taking medication is the risk of side effects.

Generally, these are not the effects you want to happen. Some side effects such as feeling tired or drowsy may be unwelcome, but some can have a beneficial effect such as lowering your cholesterol. When you take a prescribed drug, you are obviously taking it for a reason, which is to make something happen, such as preventing a condition or treating a symptom. The aim of AEDs is to stop seizures happening. But when you take any drug, there is also the possibility of side effects.

See our information on Medication for epilepsy.

A patient information leaflet (PIL) comes with every drug and uses terms like ‘common’ and ‘rare’. These terms refer to the likelihood that a side effect will happen. This likelihood is shown by how many people will get it:

  • Very common means more than one-in-10 people
  • Common means one-in-100 to one-in-10 people
  • Occasional means one-in-1,000 to one-in-100 people
  • Rare means less than one-in-1,000 people
  • Very rare means less than one-in-10,000 people
  • Extremely rare means less than one-in-100,000 people

These terms tell you how many people are likely to get the side effect, but they cannot tell you how likely you are to get it.

Knowing what these terms actually mean may help you to put side effects into perspective. This can be helpful when you are making decisions about taking — or not taking — medication.

Are side effects the same for all AEDs?

No, they vary from one drug to another. When drugs are developed they are tested on many people and the common side effects are listed on the patient information leaflet (PIL) that comes with each drug. If the side effects are very serious the drug may not continue to be developed.

Although the tests are done on many people, once a drug is licensed and prescribed it may be used by thousands of people over long periods of time. Some side effects, particularly those that are extremely rare, may not have been seen during the trials.

The guidance divides AEDs into three categories according to the importance of maintaining a consistent supply and depending on whether there is considered to be a risk of problems if switching between different versions.

Category 1 Phenytoin, carbamazepine, phenobarbital and primidone. Specific measures are necessary to ensure consistent supply of a particular product. This means that individuals should not be switched between versions of these AEDs, but should always kept on the same version.

Category 2 Sodium valproate, lamotrigine, perampanel, retigabine, rufinamide, clobazam, clonazepam, oxcarbazepine, eslicarbazepine acetate, topiramate and zonisamide. The need for continued supply of a particular product should be based on ‘clinical judgement’ (the doctors judgement of the risk of problems) and in consultation with the individual.This means that a doctor should decide, with the individual, whether it is important to always stay on the same version or whether it is ok to switch between different versions.

Category 3 Levetiracetam, lacosamide, tiagabine, gabapentin, pregabalin, ethosuximide, brivaracetam and vigabatrin. No specific measures are normally required and these AEDs can be prescribed generically.This means that individuals can be switched between different versions of their AEDs.

The guidance states that in some cases consistency of supply is important “where the consequence of therapeutic failure or toxicity might have serious clinical consequences”. This means there is a risk that switching between different versions might mean that the drugs don’t work to control seizures, or they cause toxic side effects, and this would have a serious impact on the individual.

The guidance also says that in some cases consistency of supply is important when there are “specific concerns such as patient anxiety, and risk of confusion or dosing errors”. This means that when someone is very worried about switching between AEDs, or switching might cause confusion or result in someone not taking the right dose, their doctor might want to ensure consistency of supply.

Side effects and interactions

Side effects are symptoms caused by medical treatment. They are sometimes called ‘adverse effects’ and are often unwanted or unpleasant. For some people side effects can be positive. For example, side effects that lower your appetite if you are overweight, or that cause sleepiness if you find it hard to sleep.

Do AEDs have side effects?

As with all medications, AEDs can cause side effects and possible side effects vary from one AED to another. Whether you will have side effects or not depends on how you react to the drug (as people can respond differently to the same drug). How important side effects are depends on how important you feel they are to you.

Information about side effects is included in the patient information leaflet (PIL) that comes with the packaging for each medication. The list of side effects can be long and offputting. But listed side effects are only possible effects: they do not always happen. They are often listed by how frequently they occur such as ‘common’ and ‘rare’. These terms are the same for all drugs and they show how likely it is that a side effect will happen (how many people will have it). Knowing what these terms mean may help to put side effects into perspective, and help you to make decisions about taking medication or not.

  • Very common means that at least 1 in 10 people will get it.
  • Common means that 1 in 100 to 1 in 10 people will get it.
  • Occasional means that 1 in 1,000 to 1 in 100 people will get it.
  • Rare means that less than 1 in 1,000 people will get it.
  • Very rare means that less than 1 in 10,000 people will get it.
  • Extremely rare means that less than 1 in 100,000 people will get it.

The possible side effects of AEDs may affect the choice of AED. For example, a drug that may cause extreme sleepiness might be avoided for a student who needs to be alert in class, or a drug that causes weight gain might be avoided for someone who is overweight. There are also particular issues around AEDs for women and girls who are or may become pregnant.

Types of side effects

  • Allergic reactions are rare and usually happen very quickly after starting an AED. An itchy skin rash is often the first sign of an allergic reaction. If you have an allergic reaction it is important that you speak to your specialist, a GP, or pharmacist as soon as possible about what to do. Allergic reactions can be very serious.
  • Dose-related side effects happen when the dose of a drug is too high, and usually go away if the dose is reduced. This is why medication is usually started at a low dose and increased slowly.
  • ‘Idiosyncratic’ side effects are unique to you (no one else has them).
  • Long-term (or ‘chronic’) side effects happen when a drug is taken for a long time, usually many years.

Side effects can be difficult to recognise in babies, children, and people with learning disabilities as they may not be able to say how they are feeling. If your child is taking AEDs and feels unwell you might notice a change in their behaviour.

If you have a side effect which isn’t listed in the PIL, you can report this to the Medicines and Healthcare products Regulatory Agency (MHRA) — the agency responsible for the safety of medicines in the UK. They run a ‘Yellow Card’ scheme to report side effects which are not listed in the PIL. You can get a Yellow Card by:

  • asking your GP, pharmacist, hospital or NHS drop-in centre; or
  • calling the Yellow Card hotline on 0800 731 6789

It is important to report side effects to the MHRA so that they are aware of those which need to be added to the medication’s PIL.

Although many people are able to take AEDs without problems, for some, taking AEDs can be about balancing the seizure control the drug gives with any side effects it causes. Some people may ‘put up with’ side effects if the medication controls their seizures, but if the medication doesn’t control their seizures well, they may feel it is not worth putting up with the side effects. If you are having side effects that are causing you concern you can talk to your specialist, ESN or GP.

Visit emc for more about side effects.

What are drug interactions?

Some drugs can affect and be affected by other drugs. This is called a ‘drug interaction’. When two drugs interact, how one or both drugs work will be affected. Interactions can result in one or both drugs:

  • working better (being more effective); or
  • working less well, for example, if one prevents the other from working or speeds up how quickly it is eliminated (got rid of) from the body, so it has less time to work.

Drug interactions can happen between different AEDs, and between AEDs and other types of drugs including non-prescription (or ‘over the counter’) medications including complementary therapies and herbal remedies. For this reason, it is helpful to say if you are taking other drugs before starting AEDs, or that you are taking AEDs before starting any other drugs. Usually, there is no interaction between AEDs and frequently used pain relief such as those containing paracetamol or ibuprofen.

AEDs and alcohol

Alcohol can affect how well AEDs work and can also trigger (bring on) seizures for some people (particularly during a hangover). This depends on the AED, how much the person drinks and how they react to alcohol. Drinking alcohol when taking AEDs is a personal choice and the PIL or your specialist will be able to tell you more about drinking alcohol with that medication.

When should I take my AEDs?

AEDs work best when they are taken regularly and at about the same time every day. For most AEDs it does not matter when in the day you take them — morning or evening — only that you try to stick to the same time every day. If you take them more than once a day it is useful to try to take them evenly spaced out (for example, at 8am and 8pm).

It is important to take AEDs regularly because this helps to keep the levels in your body ‘topped up’ to stop seizures from happening.

If you are unsure about when to take your AEDs you could talk to your specialist or pharmacist. The aim of taking AEDs is to make your treatment as simple and convenient as possible so that it fits into your daily routine.

How long will I have to take AEDs for?

How long you need to take AEDs depends on your epilepsy, your seizures and how you respond to the AEDs. Most people will take AEDs for at least several years and sometimes for life.

  • For some people, seizures stop or go away of their own accord (called spontaneous remission). In this case, they might come off their medication with help from their neurologist.
  • Some children have an epilepsy syndrome where their seizures stop at a particular age and so they may stop their AEDs.
  • If someone’s epilepsy does not respond to AEDs they might try other types of treatment as well as their AEDs.
  • People who continue to have a tendency to have seizures may always take AEDs. If they stop taking the AEDs the seizures will come back.

Are all AEDs the same?

Most AEDs have two names: a generic name (for example carbamazepine) and a brand or trade name given by the manufacturer (for example Tegretol). The generic name refers to the active ingredient in the drug (which works to control or treat the condition it is taken for).

Some AEDs have more than one generic form, each of which has the same active ingredient, and each can be given its own name. For some AEDs different forms may use different ingredients, such as binding or colouring agents, which can affect how they are absorbed and used in the body. Swapping between different forms of AED could affect seizure control or cause side effects. For this reason it is often recommended that, once you have found a form of AED to control your seizures, you take the same form of this AED all the time (with every prescription) whether it is generic or branded. This is called ‘consistency of supply’.

If a prescription only has the generic name of the drug, a pharmacist can give any form of that drug with that generic name. However, if the prescription has the brand name of the drug the pharmacist must give that brand of AED.

It might be a good idea to keep a note of the generic and brand name (if it has one) for any medication that you take. This might make it easier to recognise if you have been given a different form of medication. It is often a good idea to check what you have been given before you leave the pharmacy so that, if you have any questions about what you have been given, you can talk to the pharmacist. If you have been given a different form, the pharmacist might be able to change this for you.

You may like to take pictures of your medication so that you can show the pharmacist what you normally take.

Some drugs are made abroad and brought into the UK. Other drugs are made in the UK, exported and brought back to the UK. These are called ‘parallel imports’. They are sometimes labelled in a different language or have different packaging from usual. If you are concerned about your medication, you can ask your doctor to write ‘no parallel imports’ on your prescription. Although pharmacists don’t have to follow this, many will try to ensure that you are happy with your medication.

It may be helpful to get your prescriptions from the same pharmacy each time as most pharmacists keep patient medication records and can help you with questions about prescriptions.

Will AEDs affect learning or behaviour?

The aim of medication is to stop seizures without side effects or impact on behaviour. However, some children may have side effects, although these may go away after a few weeks. If their seizures are not well controlled the seizures themselves could affect the child’s behaviour. Some changes in behaviour could be due to other things, such as:

  • where in the brain the seizures happen, what happens during the seizure and how often they happen;
  • how the child feels about their epilepsy and how it affects them; or
  • how other people react to their epilepsy.

However, some changes in behaviour are a normal part of growing up and may not be related to their epilepsy. If you are concerned about whether AEDs are affecting your child you could discuss this with their paediatrician.

Many children with epilepsy find that their epilepsy and medication does not impact on their learning. However, for other children it might, for example, due to seizures disrupting their lessons or medication affecting their concentration. Problems with learning could also be due to the cause of the epilepsy or because they are having seizures. If you are concerned about this you can talk to their paediatrician.

Are there any special issues for girls and women with epilepsy?

Some AEDs can affect periods and contraception and some types of contraception are less effective for girls and women taking particular AEDs. This depends on the individual, which AEDs they take and the type of contraception they use.

Some girls and women have catamenial epilepsy — where their seizures happen at a particular time during their menstrual cycle. They may be prescribed an extra AED, alongside their regular AEDs, to take when seizures are likely to happen.

Taking AEDs while pregnant may affect a developing baby. However, these risks need to be carefully considered for each person and balanced against the possibility of seizures happening during pregnancy which may also affect a developing baby or the safety of the mother.

Research has shown that sodium valproate (including Epilim, Episenta, Epival and Convulex) has greater risks in pregnancy than other AEDs. Therefore it should not be prescribed to girls and women who are pregnant, or who may become pregnant in the future, unless other AEDs are not effective or cause unbearable side effects.

If you are thinking of starting a family, it is essential that you talk to your neurologist to talk about planning your epilepsy treatment for pregnancy and when your baby arrives, You may have questions about the type of medication you take, the dose, how being pregnant could affect your seizures, and how seizures could affect your unborn baby.

Ketogenic diet

The ketogenic diet is one treatment option for children or adults with epilepsy whose seizures are not controlled with AEDs. The diet may help to reduce the number or severity of seizures and may have other positive effects.

Up to 70% of people with epilepsy could have their seizures controlled with anti-epileptic drugs (AEDs). For some people who continue to have seizures, the ketogenic diet may help. However, the diet is very specialised. It should be carried out with the care, supervision and guidance of trained medical specialists.

What is the ketogenic diet?

The ketogenic diet (KD) is a high fat, low carbohydrate, controlled protein diet that has been used since the 1920s for the treatment of epilepsy. The diet is a medical treatment and is usually only considered when at least two suitable medications have been tried and not worked.

The ketogenic diet is an established treatment option for children with hard to control epilepsy. However, adults may also benefit from dietary treatments.

Dietary treatments for epilepsy must only be followed with the support of an experienced epilepsy specialist and dietitian (food specialist).

How does the diet work?

Usually the body uses glucose (a form of sugar) from carbohydrates (found in foods like sugar, bread or pasta) for its energy source. Chemicals called ketones are made when the body uses fat for energy (this is called ‘ketosis’). With the ketogenic diet, the body mostly uses ketones instead of glucose for its energy source. Research has shown that a particular fatty acid, decanoic acid, may be involved in the way the diet works.

Who is the diet suitable for?

The diet may not work for everyone but is suitable for many different seizure types and epilepsy syndromes, including myoclonic astatic epilepsy, Dravet syndrome, infantile spasms (West syndrome), and those with tuberous sclerosis. If you or your child has feeding problems, or has a condition where a high fat diet would cause problems, the diet may not be suitable.

The ketogenic diet can be adapted to all ethnic diets, as well as for people who are allergic to dairy products. The dietitian will calculate the diet and try to include foods you or your child likes.

What age range is the diet suitable for?

The diet can be used in children and adults of any age, although detailed monitoring may be needed in infants.

What sort of food is eaten on the diet?

There are different forms of the ketogenic diet. The types of foods eaten and the way each diet is calculated are slightly different, but each diet has shown effectiveness, in randomised controlled trials, in reducing seizures for some people.

Classical diet

In this diet most of the fat comes from cream, butter, oil and other naturally fatty foods. The classical diet includes very little carbohydrate and protein. Each meal includes a strictly measured ratio of fat to carbohydrate and protein.

Medium chain triglyceride (MCT) diet

MCTs are certain types of fat. This diet allows for more carbohydrates, so may offer more variety. It includes some fat from naturally fatty foods, as well as some fat from a supplement of MCT oil or emulsion. This can be mixed into food or milk and is only available on prescription.

Unlike the classical diet’s strict ratio of fats to carbohydrate and protein, the MCT diet is calculated by the percentage of energy (calories) provided by these particular types of fat.

Similar dietary treatments for epilepsy

The following diets have more flexible approaches, which may suit older children or adults. They are still medical treatments, with potential side effects, and need to be approved by the person’s neurologist. A ketogenic dietitian needs to individually set the diet for each person so that it is safe and nutritious.

Modified Atkins diet (MAD) and modified ketogenic diet

The Modified Atkins diet and modified ketogenic diet (sometimes called ‘modified ketogenic therapy’) use a high proportion of fats and a strict control of carbohydrates. These are often considered more flexible than the classical or MCT ketogenic diets, as more protein can be eaten, and approximate portion sizes may be used in place of weighed recipes.

Low glycaemic index treatment (LGIT)

This diet focuses on how carbohydrates affect the level of glucose in the blood (the glycaemic index), as well as the amount of carbohydrate eaten. Approximate portion sizes are used rather than food being weighed or measured.

Is this a healthy way to eat?

To make sure the diet is nutritionally balanced, an experienced dietitian works out exactly how much of which foods the person can eat each day. To help with this, people have individual recipes, are given support on how to plan meals, and are guided on which foods should be avoided. As the diet can be quite restrictive, the dietitian will recommend any vitamin and mineral supplements that are needed.

How is a person’s health monitored?

Regular follow-ups with the dietitian, and medical team, will monitor your or your child’s growth (height and weight, if applicable), health, their epilepsy, and if there is a need for any change to their anti-epileptic drugs (AEDs), such as changing to sugar-free versions. If the diet is followed carefully, individuals do not put on weight, or lose weight inappropriately.

You may be given a diary to record the number and type of seizures you or your child has while on the diet. As food can affect how we feel or act, you may be asked to note any changes in your or your child’s mood, alertness and overall behaviour. It usually takes at least three months to see whether the diet is effective. The length of time the diet is followed may vary, but if an individual remains seizure-free, has fewer seizures, or maintains other benefits, such as improved quality of life, they may consider (with their medical team), slowly coming off the diet after two years.

How is the diet monitored?

To check that the diet is producing ketones, ketone levels are checked using a blood test, or a urine analysis stick, which is dipped into a container of your or your child’s urine. The blood test involves a small pin prick on the finger (similar to monitoring diabetes). You can decide with your doctor which method to use.

Are there any side effects of the diet?

Constipation is common, partly due to a lack of fibre. This can be easily treated. Hunger, vomiting and lack of energy are also common at the start of the treatment, but these may decrease with time and may be avoided with careful monitoring.

Many people report an increase in energy and feeling more alert once they are used to the diet.

Does the ketogenic diet work?

A clinical trial at Great Ormond Street Hospital in 2008, and other studies since then, showed that the diet significantly reduced the number of seizures in a proportion of children whose seizures did not respond well to AEDs. After three months, around 4 in 10 (38%) children who started the diet had the number of their seizures reduced by over half, and were able to reduce their medication. Although not all children had better seizure control, some had other benefits such as increased alertness, awareness and responsiveness.

Other trials have since shown similar results in children. High quality evidence for the effectiveness of dietary treatment for adults is increasing.

Research studies are continuing to investigate how the different diets work, and why dietary treatments are effective for some people and not for others.

How can someone start the diet?

You can discuss the option of you or your child starting the diet with your GP or paediatrician/neurologist.

Vagus Nerve Stimulation (VNS)

Vagus Nerve Stimulation therapy is a treatment for epilepsy that involves a stimulator (or ‘pulse generator’) which is connected, inside the body, to the left vagus nerve in the neck. The stimulator sends regular, mild electrical stimulations through this nerve to help calm down the irregular electrical brain activity that leads to seizures.

There are several ways to treat epilepsy. How well each treatment works varies from one person to another. Vagus nerve stimulation therapy is a form of treatment for people with epilepsy whose seizures are not controlled with medication.

What are the vagus nerves?

The vagus nerves are a pair of nerves that start in the brain and run through the body. They carry messages between the brain and the body.

What is VNS therapy and how does it work?

Vagus nerve stimulation (VNS) therapy is a treatment for epilepsy that involves a stimulator (or ‘pulse generator’) which is connected, inside the body, to the left vagus nerve in the neck. The stimulator sends regular, mild electrical stimulations through this nerve to help calm down the irregular electrical brain activity that leads to seizures.

What is the aim of VNS therapy?

VNS therapy aims to reduce the number, length, and severity of seizures. For some people, their seizures become much less frequent, for some it may reduce their seizures a little, and for others it has no effect. VNS therapy may reduce the length or intensity of seizures but this does not happen for everyone. It may also reduce the time it takes to recover after a seizure. It is unlikely to completely stop seizures and it does not ‘cure’ epilepsy.

The effect of VNS therapy may not happen straightaway; it can take up to two years for it to have an effect on someone’s seizures. It is used alongside anti-epileptic drugs (AEDs) not instead of them. However, if VNS therapy works, it may be possible to reduce a person’s AEDs over time.

Can I be considered for VNS therapy?

VNS therapy is usually considered if you have tried a number of AEDs which have not fully controlled your seizures, and if you are not suitable for, or do not want to have, brain surgery.

People who are considering VNS will usually be given information about VNS from their neurologist or epilepsy specialist nurse.

What is the stimulator like?

The stimulator is a bit like a heart pacemaker. It is implanted (placed) under the skin in the upper chest (under the left collar bone) during a small operation under general anaesthetic.

Because of the size of the stimulator there will be a small lump where it lies, and a small scar where it was put in. A lead connects the stimulator in the chest to the vagus nerve in the left side of the neck. Because the electrodes are coiled around the nerve in the neck, there will also be a small scar where they are inserted, usually in the fold of the neck.

How does the stimulator work?

The stimulator is usually switched on within four weeks of it being implanted. The neurologist or nurse will programme the stimulator and set the amount (strength and length) of the electrical stimulation given. The amount of stimulation varies from person to person, but is usually started at a low level and slowly increased to a suitable level for each person. Usually it is set at 30 seconds of stimulation every five minutes through the day and night.

The stimulator has a battery inside it which can last up to ten years. When the battery is low, the stimulator needs to be replaced, during an operation similar to the one when it was put in.

What can VNS therapy do during a seizure?

Some people have a warning or aura which is a focal aware seizure that tells them that they are going to have a further seizure. When this happens, a special magnet can be passed over the stimulator to give stronger stimulation for a slightly longer period of time. This may stop the aura from developing into another seizure, or may reduce how long it takes the person to recover after a seizure.

Keep the magnet close by — it can be worn on the wrist like a watch, or on a belt, or attached to a wheelchair. For people who have no warning before a seizure, someone else could use the magnet for them when a seizure happens.

Some people may experience an increase in heart rate during their seizures. The AspireSR® and SenTiva® devices can pick up these changes and give automatic stimulation in a similar way to magnet stimulation.

Does VNS therapy have any side effects?

VNS therapy can cause side effects but usually only during the time that the nerve is being stimulated. Side effects may not happen for everyone but can include discomfort in the throat, a cough, difficulty swallowing, and a hoarse voice.

Side effects may reduce over time and do not usually mean that the stimulator has to be switched off. If side effects are a problem, the neurologist or nurse can adjust the settings, or the magnet can be held over the stimulator for a few seconds to briefly stop the stimulation.

VNS therapy does not affect, and is not affected by, anti-epileptic drugs.

What about any other positive effects?

Some people feel that VNS therapy improves their mood, memory, or alertness, and may also help reduce depression or have a positive effect on their quality of life (overall wellbeing).

What happens if it does not work?

VNS therapy does not work for everyone. If there is no benefit received from VNS therapy, you and your specialist may consider having it switched off or removed. Even if VNS therapy has no effect on the seizures, it might have other positive effects (see previous question).

Can I have an MRI scan if I have VNS therapy?

If you have VNS therapy and need an MRI, it is important that everyone involved with the scan is aware so that they can decide if the scan can be done.

The MRI’s magnetic fields can cause the leads to overheat, which may cause burns to the skin near the electrodes or leads. Risks depend on the MRI machine used and the type of scan you need. It may be possible to scan the brain with an MRI scanner that has a very specific strength setting.

X-rays and CT scans do not affect, and are not affected by, VNS therapy. This is because they do not produce enough radiation to cause damage to the stimulator. However, extra care may be needed, or the stimulator may need to be switched off for the scan, and turned back on again afterwards.

Can I go through security at the airport?

At the airport, you can provide security officers with your VNS Therapy ID card, which explains that you have an implanted medical device. You can request a pat down check instead.

Epilepsy surgery

Epilepsy surgery is the name for the different types of brain surgery (also called neurosurgery) that some people with epilepsy have, to stop or reduce their seizures.

There are different kinds of epilepsy surgery. One kind of surgery involves removing a specific area of the brain which is thought to be causing the seizures. Another kind involves separating the part of the brain that is causing seizures from the rest of the brain.

On this page when we use the word ‘surgery’ we mean epilepsy surgery.

When would someone have surgery?

For some people surgery can stop or reduce the number of seizures they have. It might be considered if anti-seizure medication (ASM — previously called anti-epileptic drugs, or AEDs) have not stopped or significantly reduced the number of seizures.

Can I have surgery?

Surgery may be possible for both adults and children, and might be considered if:

  • you have tried several ASMs and none of them have stopped or significantly reduced your seizures; and
  • a cause for your epilepsy can be found in a specific area of your brain, and this is an area where surgery is possible.

Whether you are suitable for surgery is something that you may like to talk about with your GP or neurologist. If you meet these criteria and are considered for surgery, you will need to have further tests before you can have the surgery.

How do I know if my epilepsy has a specific cause?

One of the tests sometimes used to help diagnose epilepsy is a brain scan. You may have either an MRI (magnetic resonance imaging) scan or a CT (computerised tomography) scan. Although they use different technology, both produce an image of your brain which may show a specific cause for your epilepsy.

Known causes can include scarring on the brain, malformations of brain development (problems in how the brain forms), or damage to the brain from a head injury, or following an infection such as meningitis. If a specific cause is found, it is called the ‘epileptogenic lesion’. The epileptogenic lesion can be different in each person.

The tests used before surgery

If you are referred for surgery you will probably go to a specialist centre for tests. There are many different pre-surgical tests you might have before you can be given the go-ahead for surgery. This could include further MRI scans, an EEG (electroencephalogram) and video telemetry (an EEG while also being filmed). Other types of scans may also be done, which trace a chemical injected into the body. This can show detailed information about where seizures start in the brain.

Memory and psychological tests are also used to see how your memory and lifestyle might be affected after the surgery. These types of tests also help the doctors to see how you are likely to cope with the impact of having this type of surgery.

The tests will confirm whether:

  • the surgeons can reach the epileptogenic lesion during surgery and can remove it safely without causing new problems;
  • other parts of your brain could be affected by the surgery, for example the parts that control your speech, sight, movement, or hearing;
  • you have a good chance of having your seizures stopped by the surgery; and
  • you have any other medical conditions that would stop you from having this kind of surgery.

The results from the pre-surgical tests will help you and your neurologist decide whether surgery is an option for you, and what the result of the surgery might be.

Your specialist will also talk with you about the possible risks and benefits of having surgery.

For many people the results show that surgery is not an option: the majority of people who are recommended for surgery, and have these tests carried out, are unable to have surgery.

Deciding whether to have surgery

Having any kind of surgery on the brain is a big decision and you may have lots of questions or concerns that you want to discuss before you are able to make up your mind. The doctors will be used to this because it is an important part of deciding about, and preparing for, surgery.

To give you the full picture when deciding about having surgery, your doctor will explain to you about the potential risks of the kind of surgery you are having. Although your doctor can give you information and advice, the final decision is yours. To give you time to talk about how you are feeling about having surgery, you may be offered some form of pre-surgical counselling.

You might like to read the personal experiences of people who have undergone epilepsy surgery or who are considering it.

What are the possible risks of surgery?

For any type of surgery, there are possible risks relating to how the person responds to anaesthetic, or to any complications that happen during the operation.

Risks for epilepsy surgery will vary depending on what type of surgery a person has. The most common type of epilepsy surgery is removal of part, of the temporal lobe. Possible risks of this type of surgery include problems with memory, a partial loss of sight, depression or other mood problems. These risks will vary from person to person, and may be only temporary in some cases. For some people, their memory and mood could improve after epilepsy surgery. Therefore the chance to ask your medical team questions before surgery is very important, to help you understand what the specific possible risks are for you.

Can I change my mind?

You may feel very excited about the surgery and the positive effect you’re hoping it will have on your life, or you might be feeling nervous about it. This is absolutely normal and is to be expected. You might also feel that you’ve changed your mind about having surgery, for whatever reason. This is ok — it is a big decision and you have the right to say no to the surgery if you don’t want to have it.

After surgery

Immediately after the surgery your doctors will monitor your recovery. For the first few days you may feel very tired and need to sleep, as it can take a while for the anaesthetic to completely wear off.

Some people who have brain surgery will have seizures within the first week of surgery — but this doesn’t mean the surgery has not been successful. Seizures after surgery can happen because of the direct stress the brain experiences in surgery, rather than because a person has a history of epilepsy.

How long you may need to spend in hospital will depend on the type of surgery you have had and how the doctors feel you are recovering. Generally your doctors might expect you to be back to your normal activity about six weeks after your surgery, but this is very individual.

Reviews after surgery

Following surgery most people will have reviews with their doctors about their recovery and any seizure activity. How often you will need a review will be something you and your doctors will decide together.

How will I know if my surgery has worked?

Before your surgery your medical team will have talked with you about the aims of your surgery and how successful they expect the surgery to be. For some people “successful surgery” may mean completely stopping all seizures, for others it may mean reducing the number or severity of their seizures. Usually it takes two years after surgery to fully measure how successful your surgery has been.

How successful is epilepsy surgery?

Around 70% of people (7 in 10 people) who have temporal lobe surgery find that the surgery stops their seizures and they become seizure-free, and for a further 20% (1 in 5 people) their seizures are reduced. Around 50% of people (half) who have temporal lobe surgery are still seizure-free 10 years after their surgery, but most of these people will still take their ASM for some time.

You can talk to your neurologist about when might be the best time to start to slowly come off the ASM.

Cannabis oil for epilepsy

What is cannabis?

Cannabis is made up of hundreds of different components. The most well known are two cannabinoids: CBD — cannabidiol — and THC — tetrahydrocannabinol. These are found naturally in the resin of the cannabis plant.

THC is the psychoactive compound in cannabis. It is responsible for the “high” people feel. The legal limit of THC content in a product, as stipulated by the Home Office, is 0.2%.

CBD is not psychoactive and it is thought to be responsible for many of the medical benefits associated with cannabis.

What is medicinal cannabis?

The Government has defined a cannabis-based product for medicinal use in humans as one that:

“Is or contains cannabis, cannabis resin, cannabinol or a cannabinol derivative; is produced for medicinal use in humans and is a medicinal product, or a substance or preparation for use as an ingredient of, or in the production of an ingredient of, a medicinal product”.

Prescriptions should only be for cannabidiol.

CBD does not contain any significant amount of THC, the component of cannabis associated with producing a ‘high’.

What is the evidence?

CBD is effective in reducing some type of seizures in Dravet and Lennox Gastaut syndromes.Three double blind randomised controlled trials of pure CBD in children and young people with these syndromes has shown a greater in monthly seizures compared to placebos. There was also a greater reduction in drop seizures in people taking CBD compared to those on a placebo. Further open label studies have shown that it may also have an anti-epileptic effect in the epilepsies in general.

There is also a wide range of other cannabis products available on the internet and in some commercial outlets such as health food outlets internationally.

Use CBD of good quality and on your physician’s advise from a good source such as https://www.buy-swiss-cbd-ihs.com/redir-affiliation-186-79026.html and make sure to not depend on small operators, where quality of the product is questionable.

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Dr. Christopher Smith
Dr. Christopher Smith

Written by Dr. Christopher Smith

Physician, scientist, professor, studying role of CBD in epilepsy, Parkinson’s, multiple sclerosis, dystonia, anxiety, and cancers.

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