Epilepsy is a condition that can commonly develop after brain injury. Epileptic seizures, or ‘fits’, are most frequent in the first week after brain injury and tend to become less common after this. However, it is still possible for people to be at risk of developing epilepsy weeks, months or even years after the injury. Epilepsy may improve over time, although some people may have ongoing problems with it and will require the use of medication to control their seizures.
What is epilepsy?
Epilepsy is a condition that develops as a result of abnormal activity in the brain.
Regular brain activity occurs through electrical signals that pass between cells in the brain called neurons. Usually, these signals are passed from cell to cell in a systematic and controlled way, which results in all of our thoughts and feelings. After a brain injury, however, some people may develop sudden onsets of random and erratic electrical activity in their brain. This is called a seizure, and can commonly cause symptoms such as a change in or loss of consciousness, shaking or convulsing, or tongue biting.
There are different types of epileptic seizures. These are described below.
Generalised tonic-clonic seizures
Many people recognise seizures in the form of generalised tonic-clonic seizures, sometimes referred to as ‘grand mal’ seizures.
In this type of seizure, abnormal electrical activity occurs across most of or all of the brain.
They are characterised by a sudden loss of consciousness and falling, followed by stiffening (tonic phase) and then rhythmic jerking of the whole body (clonic phase). The person may bite their tongue or lips, or be incontinent.
Following the seizure, there may be a period of drowsiness, confusion or sleep.
Generalised tonic-clonic seizures are sometimes preceded by a strange taste, smell or other sensation, known as an ‘aura’. These tend to occur in the same way before each seizure. Some people may learn to detect when they are about to have a seizure by the presence of an aura.
Partial seizures
Partial seizures are sometimes referred to as focal seizures. These affect only part of the brain. Changes in consciousness and behaviours such as lip-smacking, picking at clothing, grimacing and unresponsiveness occur. These seizures can also have symptoms of sudden anger, panic, depression and other states of mind.
Sometimes the person having a partial seizure does not exhibit any unusual behaviours, but they stop responding to the environment and ‘blank out’. They will often have no recollection of it afterwards, and they might be very tired and wish to sleep.
Although partial seizures only affect part of the brain, they may spread across the whole brain and lead to a generalised seizure.
Diagnosing epilepsy
There are a number of methods used to diagnose epilepsy. These methods rely on measuring bodily functions such as heart rhythm or brain activity. The main methods used are described in some detail below.
Electroencephalography (EEG) - This method measures electrical activity of the brain through a number of electrodes that are placed on the surface of the scalp. The electrodes are attached to a close-fitting cap that the person undergoing EEG needs to wear. A gel is often applied to the scalp to make it easier for the electrodes to detect brain signals.
An EEG can take approximately 20 minutes to conduct, although a person may be asked to stay awake the night before and have the EEG in hospital while falling asleep. This is called a ‘sleep deprived’ EEG.
Wearing the EEG electrodes for two or three days can help if a recording needs to be made during a seizure. In this case, the wires can be hidden and the recording made on a small device attached to a belt.
Electrocardiography (ECG) - This method records the electrical activity and rhythm of the heart. Changes in heart rhythm can sometimes trigger off attacks that are similar but nevertheless different to epileptic seizures. Therefore an ECG might need to be performed to rule out the possibility of heart problems.
Magnetic resonance imaging (MRI) - This method takes images of the brain with the use of very powerful magnets. The person having an MRI scan is asked to lie very still in a scanner while the images are taken. Having an MRI scan is not painful, although some people find it to be claustrophobic as the scanner is very narrow, and it can be noisy (although headphones are provided). In some cases, a sedative, or in rare cases an anaesthetic, may be given to help. MRI scans usually take around 20 minutes to perform.
Controlling epilepsy
If you are liable to epileptic seizures, you may be able to recognise the ‘warning signs’ that one is about to occur, and you may have time to sit down or tell someone what is about to happen. It may then be possible to prevent the seizure from becoming generalised by using a variety of techniques to reduce arousal levels. There is no single proven method of reducing the frequency of seizures or preventing the seizure from becoming generalised: different methods work for different people. It is therefore important to look at individual patterns of seizures and, in particular, any triggers such as tiredness, stress, caffeine and even relaxation.
It might help to keep a diary of details surrounding the seizure after one has taken place, for instance what you were doing before the seizure started, the time that the seizure began, and other such details. This might help with identifying patterns of triggers, allowing you to take more control of your epilepsy.
Anti-convulsant medication may be prescribed to control seizures that develop following a brain injury. Some people are given drug treatment for epilepsy following their brain injury before they have even had a seizure, in order to prevent potential seizures from developing. This is known as prophylaxis. The Epilepsy Society has a useful list on their website of different anti-epileptic medications that are commonly used to treat epilepsy.
Remember that to have better control of anything, it is important to understand the thing as much as possible. Research the type of epilepsy that you have, while remembering that everyone’s patterns of seizures will be different.
Epilepsy and driving
If you have had a seizure, regardless of how ‘minor’ it was or whether or not you have been diagnosed as having epilepsy, you have a legal responsibility to stop driving and inform the Driver and Vehicle Licensing Agency (DVLA), or the Driver and Vehicle Agency (DVA) if you are in Northern Ireland. They will typically contact your doctor for a medical report. They may ask you to undergo an examination by one of their medical advisors.
Headway webinar: Understanding post-traumatic epilepsy
View video transcript Hide video transcript
And it is my great pleasure to be with all of you today talking about post-traumatic epilepsy.
I'll try to be as simple as possible, but not simplistic. I hope that at the end of the webinar there will be the opportunity to go through some of the points that may not be completely clear, but I am trying to do my best to make everything as simple as possible.
This is my disclosure.
First of all, what is a seizure? What happens in the brain of someone who has a seizure? And what's the difference between having a seizure and having epilepsy?
Many of you may have an idea what a seizure is because you know someone who has epilepsy, or you may have seen it. But what happens in the brain?
The brain is like the computer of the body, the electrical system of the body. As you know, everything runs through electrical signals. An epileptic seizure is simply an electrical short circuit happening in the brain, either in one area of the brain or involving the whole brain.
Having an isolated seizure is not that uncommon. It is estimated that up to 5% of the population can have a seizure during their life, sometimes for reasons that are not entirely clear.
Epilepsy is different. The International League Against Epilepsy, which is the worldwide scientific association for epilepsy, published a new practical definition in 2014 in order to make this easily understandable to clinicians.
Epilepsy is the enduring predisposition of the brain to have repeated seizures. The electrical system of our body has some sort of predisposition towards having these electrical problems. This predisposition has been quantified as a risk higher than 60% of having a second seizure after the first one in the subsequent two years.
This 60% risk is considered high enough to recommend taking anti-seizure medications.
Based on this, one in 26 people in the world have epilepsy. That's around 50 million people worldwide, so it is not uncommon at all.
In traumatic brain injury, the situation is more complex because seizures may represent a symptom of the underlying brain insult.
This is what happens at the very beginning. Shortly after a head injury, people may have a seizure. These seizures are called early seizures, or acute symptomatic seizures. They are a symptom of the brain injury and do not, by themselves, represent the onset of epilepsy.
There are then other seizures that happen later on. These are called late seizures and unfortunately are the consequence of a number of chemical and structural changes in the brain that lead to this enduring predisposition.
The scar in the brain, or other reorganisation of the neural networks, unfortunately accounts for this enduring predisposition, and this is post-traumatic epilepsy.
At the moment, based on epidemiological studies involving large numbers of patients affected by seizures after head injury, seven days is generally used as the cut-off to distinguish between early seizures and late seizures.
This is something currently under discussion and may change in the future, but it is what is usually used by doctors.
As I said, early seizures are not associated with an increased risk of having subsequent seizures. Therefore, they do not represent post-traumatic epilepsy.
However, when they happen, it usually means that the head injury is quite serious and that the patient is particularly unwell. This is why they are sometimes treated.
Having an early seizure is associated with an increased risk of dying because of the severity of the head injury during the subsequent 30 days. This is why doctors sometimes decide to start anti-seizure medications very early, in order to minimise the risk of death or other consequences associated with these seizures.
It is also good practice to explain that these medications should be gradually reduced and stopped when the patient is more stable.
If somebody continues taking anti-seizure medication for months or years, any late seizure, which may represent the onset of epilepsy itself, would also be controlled by the medication. It becomes impossible to know whether someone has developed post-traumatic epilepsy or not.
The problem with post-traumatic epilepsy is that seizures can start at any time.
There are anecdotal observations of patients developing epilepsy a decade or even two decades later. This is likely due to many reasons. The rewiring of the brain may still function efficiently when we are younger, but as we age, that rewiring may no longer be as effective. This may explain why some people develop epilepsy a long time after a head injury.
Again, post-traumatic epilepsy is a symptom of the severity of the head injury. It happens very rarely following a mild head injury. It happens much more frequently in someone who has had a severe head injury, a skull fracture or a lesion in the brain.
The first question everyone usually asks is whether it is possible to prevent the development of post-traumatic epilepsy by giving medication immediately after a brain injury.
At the moment, the answer is no.
Over the last 30 to 35 years, researchers have tried many drugs and compounds in numerous studies. Unfortunately, none of them have managed to stop the changes that lead to post-traumatic epilepsy.
Anti-seizure medications definitely do not prevent epilepsy because they simply help electricity run smoothly through the brain, preventing seizures. They do nothing for the chemical changes happening in the brain. They are not neuroprotective agents. They do not protect the brain when it is under stress.
Having a head injury obviously affects brain performance significantly.
The development of post-traumatic epilepsy represents what many of us call a "second hit", because the brain now has to find a new balance or baseline while dealing with this additional electrical problem.
Controlling seizures completely is the best way to help the brain find that balance quickly. Otherwise, the brain will eventually find a new balance, but the adjustment takes longer.
This is why patients often say things like:
"I had become stable again."
"I had found a balance after my head injury."
"But since I had the seizure, my memory isn't as good as before."
People may also notice changes in sleep or other areas of functioning.
Unfortunately, this is what happens.
The best thing to do is take medications regularly to try to control seizures as much as possible and support the brain in finding a new balance and baseline as soon as possible.
Why do we treat epilepsy?
The main reason is SUDEP, which stands for Sudden Unexpected Death in Epilepsy.
SUDEP is not a disease or condition. It is a category of uncommon sudden death, meaning an otherwise healthy person dies unexpectedly.
This is one of the main reasons why epilepsy specialists explain the importance of treating seizures.
Obviously, SUDEP is uncommon. Approximately one in every 1,000 people with epilepsy dies from SUDEP each year.
That is still a significant number, but as I often say, it is much more likely that someone will die in a car accident than from SUDEP. Nevertheless, it remains highly relevant if you have epilepsy.
There probably isn't one single cause. What we know from research is that the electrical disruption can involve key areas of the brain involved in breathing and its control. This can happen during or shortly after a seizure.
I have also included on my slide the SUDEP Action Association website, which provides information and support about SUDEP.
The usual question is:
"Could SUDEP happen to me?"
What we know from statistics is that the most important risk factor is having tonic-clonic seizures, the major convulsive seizures that most people think of when they hear the word seizure.
Having seizures during sleep is another important factor. Being a young man, or having epilepsy that began very early in life, are also recognised risk factors.
Not taking medication is another important factor, because seizures remain uncontrolled.
Alcohol and recreational drug use are also highly relevant risk factors.
Everyone can help reduce their risk by:
Taking medications regularly.
Getting enough sleep.
Avoiding alcohol and recreational drugs.
Recognising seizures during sleep.
Working closely with their doctor to achieve better seizure control.
This might involve trying new medications, making changes and making sure treatment plans are implemented promptly and consistently.
Another common question concerns monitoring devices.
Are they relevant?
They can be, but mainly if someone is available to help and perform CPR if needed. Room sharing remains one of the most important protective factors against SUDEP.
So how do we treat post-traumatic epilepsy?
We have several treatment options.
Anti-seizure medications remain the first-line treatment.
Epilepsy surgery is still a valuable option for people with post-traumatic epilepsy.
Neurostimulation, particularly vagus nerve stimulation, is also important.
A ketogenic diet is another option, although it is used less often in adults.
There are also a number of new drugs and compounds under investigation, including stem-cell approaches, which sound quite futuristic.
Over the last 100 years, many different compounds have been developed and we now have almost 30 different anti-seizure medications available.
Unfortunately, even today, it is not possible to predict which drug will be best for an individual patient.
What we do know is that approximately 30% of patients become completely seizure-free on the first medication they try.
Another 30% become seizure-free after trying a second medication or a combination of two medications.
Unfortunately, around 40% of patients try multiple drugs and none appear to work adequately. This is known as drug-resistant epilepsy.
This isn't specific to post-traumatic epilepsy. It applies to epilepsy generally.
As a result, current practice remains largely based on trial and error. If your doctor recommends different drugs over time, this is because that is the best approach currently available.
We always aim to achieve the best seizure control possible with the fewest side effects.
Unfortunately, all medications have side effects, and you help us identify which medication is best for you.
As I mentioned, people with drug-resistant epilepsy may also need non-pharmacological approaches.
Epilepsy surgery is a well-established treatment for a number of conditions.
It involves removing the area of the brain identified as being responsible for the electrical short circuit.
Many people with head injuries are not immediately considered for epilepsy surgery because there may be multiple affected areas or complex patterns of scarring.
That is true, but it is still important to explore whether surgery might be an option.
Feel free to discuss it with your doctor.
Epilepsy surgery is usually performed in highly specialised tertiary or quaternary centres.
NICE also recognises head injury as one of the potential indications for epilepsy surgery.
Neuromodulation is another valid option.
In the UK, only vagus nerve stimulation, or VNS, is routinely commissioned by the NHS.
Several other neurostimulation techniques are available elsewhere in Europe, although not generally in the UK.
VNS involves a small pacemaker connected to the vagus nerve in the neck.
Stimulating this nerve appears to help regulate electrical activity within the brain, and for that reason it has been used for many years as a non-pharmacological treatment for seizures.
The operation itself is relatively small and can be performed in a number of centres.
It is an important option to consider for people with drug-resistant epilepsy.
Unfortunately, having epilepsy does not simply mean having seizures.
Approximately 50% of adults with epilepsy have at least one additional medical condition. This is much more common than in the general population.
These additional medical conditions, which we call co-morbidities, account for much of the medical cost of epilepsy and a considerable amount of its associated disability.
In this respect, epilepsy and head injury share a similar journey.
Head injury is associated with a wide variety of problems, not just the injury itself.
People with post-traumatic epilepsy often face multiple difficulties simultaneously. Not only seizures, but also psychological consequences such as anxiety, depression and post-traumatic stress disorder, neurological symptoms, cognitive problems and sleep difficulties.
This is why a multidisciplinary approach is so important, both for epilepsy generally and especially for post-traumatic epilepsy.
There is a lot that can be done.
Patient organisations have an important role.
First of all, education. Informing and empowering patients so they understand what may happen is incredibly important.
Sometimes it is difficult for clinicians to identify a person's individual needs in a short consultation. Often it is only over time that these become clear.
Being aware of what may happen helps people identify their needs much earlier.
Services and patient organisations can also establish links with specialist services such as mental health and psychology teams and advocate for better access to these services.
Unfortunately, even in 2025, epilepsy remains more stigmatised than many other medical conditions.
For neurologists, it is important to identify all of these problems, remain aware of drug interactions and appreciate that people with multiple conditions may need multiple medications.
The International League Against Epilepsy remains very active in providing guidance and support through a range of important publications.
To conclude, even today post-traumatic epilepsy remains common.
It accounts for around one in five symptomatic epilepsies and one in 20 epilepsies overall.
The good news is that more than half of patients can become completely seizure-free with anti-seizure medication.
It is important to take medication regularly to achieve this.
For those who do not respond, there are alternative treatment options available.
People with post-traumatic epilepsy have multiple needs that require a multidisciplinary approach.
It is important for all of us to work together to support research in this area.
So, I'm now happy to hand over to my colleague.
Thank you very much.
Thank you very much, Marco, and hello everybody.
My name is Laura Price and I'm the Research Programme Manager at the Epilepsy Research Institute.
I'd just like to spend the last few minutes of this webinar talking about the Institute and our mission to radically advance research into epilepsy, and how we involve people with epilepsy in our day-to-day work.
We were originally Epilepsy Research UK.
With support from several other epilepsy charities, in 2023 we asked the Government to grant us Institute status as we knew this would help accelerate epilepsy research in the UK.
We were granted Institute status, and the Epilepsy Research Institute was born in October 2023.
As you will have gathered from Marco's presentation, there are still many unknowns about epilepsy.
It is a hugely complex area.
There are many different conditions that can give rise to epilepsy, including structural, metabolic, infectious, immune and genetic causes.
Post-traumatic epilepsy is one of these.
When it comes to genetic causes, over 900 genes have now been linked to epilepsy. They do not all directly cause epilepsy, but they appear to change in some way in people with epilepsy, and we need to understand why.
Studying epilepsy is therefore highly complex and presents many challenges.
One of the first things we did was undertake a priority-setting exercise together with the James Lind Alliance.
This involved asking people living with epilepsy, healthcare professionals and epilepsy researchers what they believed were the most important unanswered questions in epilepsy research.
Hundreds of suggestions were submitted.
Through a structured process of discussion, refinement and repeated consultation, these were narrowed down until we arrived at a top ten list of research priorities.
These priorities have shaped the way the Institute approaches research and determines where to focus its attention.
Many of these priorities are highly relevant to people living with post-traumatic epilepsy.
We then used those top ten priorities to shape our research programme.
We identified four key themes:
Neurodevelopment.
Advanced therapeutics and disease modification.
Mortality, morbidity and risk.
Reproduction and hormones.
Neurodevelopment examines how seizures affect brain development and how brain development influences seizure risk.
Advanced therapeutics focuses on finding treatments that do more than suppress seizures. Could we actually alter the course of epilepsy or even cure it? Could medications developed for completely different conditions prove useful for epilepsy?
Mortality, morbidity and risk includes work on SUDEP and the wider health consequences associated with epilepsy. We are also beginning new work on mental health in people with epilepsy.
Reproduction and hormones is another important area because many anti-seizure medications require careful management during pregnancy, and there are still many unanswered questions regarding the role of hormones in epilepsy.
Alongside these, we also have two cross-cutting themes.
The first is enabling technologies. This includes technologies that support research, such as artificial intelligence and advanced imaging, as well as technologies that help people with epilepsy in daily life.
The second is capacity building.
It is vital that we support and grow the epilepsy research community. Researchers drive progress and are central to everything we do.
For each theme we have three theme leads, including both laboratory scientists and clinical researchers.
We also ensure that one of these theme leads is an early-career researcher, reflecting our commitment to supporting the next generation of epilepsy researchers.
Each theme is supported by an expert task force made up of UK and international researchers and clinicians.
Marco, for example, is a valued member of our Mortality, Morbidity and Risk task force.
We also include people with lived experience through our SHAPE Network.
The SHAPE Network consists of people affected by epilepsy who are interested in research.
At present, more than 700 people are involved.
Members can participate directly in research activities.
For example, when we assess funding applications, researchers present their projects to SHAPE members. They can ask questions, discuss the research and tell us how important they believe that research is.
Their views are considered alongside those of scientific experts, helping us make funding decisions.
Researchers also approach us when they would like to speak directly with people who have epilepsy.
We help make those connections so that research can be better informed by lived experience right from the beginning.
One of the challenges we continue to face is helping people understand the real impact epilepsy has on everyday life.
I would particularly like to draw your attention to a short film called Under the Lights, which was written and directed in 2018 by a young man with epilepsy in the United States.
It provides a powerful insight into the impact that seizures can have on a young person's life.
If you have the opportunity, I would encourage you to watch it and share it.
I'll stop there because I'm sure there are lots of questions for Marco.
Thank you very much.
-
Living with brain injury
Find out more about the effects and impact of brain injury and how to cope
Living with brain injury -
Need to talk?
Contact our nurse-led helpline for further information and support
Headway Helpline about Need to talk?
Support our work
We need your help
Every 90 seconds, someone is admitted to a UK hospital with a brain injury. Your donation helps Headway UK provide specialist advice and support to brain injury survivors and their loved ones.
£9
could help fund a Headway Brain Injury Identity Card every month, giving brain injury survivors confidence in social situations and access to the right support.