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Up to 2 in 3 people diagnosed with a brain tumour will experience at least 1 seizure.
That may sound like a lot, but it's important to remember that not everybody who is affected by a brain tumour will experience seizures or epilepsy.
For those that do, the symptoms and severity will differ from person to person, so you may not have the same problems as someone with a similar diagnosis and treatment plan.
Our brains have billions of nerve cells which control the way we move, think and feel. They do this by passing electrical signals or messages to each other. So electrical activity is happening in our brains all the time.
A seizure happens when there's a burst of abnormal electrical activity that disturbs the way the brain normally works, mixing up the messages. This causes a variety of symptoms.
Seizures are the most common first symptom leading to a brain tumour diagnosis in adults. However, you may only have seizures for a short period of time, for example, before treatment or due to swelling of the brain after surgery.
You're more likely to have a seizure if:
Epilepsy is the tendency to have repeated seizures, so it's usually only diagnosed after you've had more than one seizure. There are more than 40 types of epilepsy of which brain tumour-related epilepsy (BTRE) is one.
In brain tumour patients, seizures may be related to cells around the tumour that have developed abnormally. Or they may be due to an imbalance of chemicals in the brain caused by the tumour. Both of these can interfere with the normal electrical activity in the brain.
Not knowing when your seizures might happen can make you feel insecure about being out in public or alone at home. Use BRIAN’s quality-of-life tracker to plot your seizures against possible triggers, so you can try to identify and avoid them.
BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.
Download our BRIAN app on the App Store Download our BRIAN app on Google Play
The effects of a seizure depend on:
If a seizure continues for more than 5 minutes or repeated seizures occur without recovery in between, emergency (rescue) medication should be given and an ambulance should be called immediately. Do not wait!
When people think about seizures, they often think of convulsive seizures, where somebody loses consciousness, their body goes stiff and they fall to the floor with their limbs jerking.
Convulsive seizures are rarely experienced by people living with a brain tumour and sometimes referred to as fits - but are more correctly called tonic-clonic seizures.
However, there are many different types of seizures.They can range from convulsive seizure to absent seizures, where someone just feels a bit strange or spaced out.
Your seizures may not exactly match one of the types described, but they will usually last the same length of time and follow the same pattern each time they happen.
Seizures are grouped according to:
Focal onset (previously called partial seizures)
Focal to bilateral
Generalised onset
Unknown onset
Focal aware (previously called simple partial seizures)
Focal impaired awareness (previously called complex partial seizures)
Generalised seizures
Motor seizures
Non-motor seizures
The effects you're likely to experience will also depend on where the tumour is in your brain and what that area of the brain controls. If your tumour is located over two different areas of the brain, you may experience a combination of symptoms.
The following are examples of what can happen, but you may experience something different:
Focal aware
Focal impaired awareness
These may start as a focal aware seizure and usually last 2–3 minutes.
Focal aware
Focal impaired awareness
These usually last 15–30 seconds.
Focal aware
Focal impaired awareness
These are less common than temporal or frontal lobe focal impaired awareness seizures and usually last 15–30 seconds.
Focal aware
Focal impaired awareness
These are less common than temporal or frontal lobe focal impaired awareness seizures and usually last 15–30 seconds.
Occasionally, seizures may not stop, or one seizure follows another without any recovery in between. If this goes on for 30 minutes or more it is called 'status epilepticus' or 'status'.
This is uncommon, but potentially serious, and requires hospital treatment. If you or a loved one is experiencing this, you should call 999 imediately.
Although epilepsy is more likely in certain low grade tumours, we don't fully understand why this is the case.
Suggestions include abnormally developed cells around the tumour that fire (send signals) more often, causing disorganised electrical activity in the brain, which leads to seizures. This is sometimes the cause in people with non-brain tumour-related epilepsy.
Or it could be due to the tumour causing a disturbance in the balance of chemicals in the brain, causing the nerve cells to fire more often.
It’s important to remember that an increase in the frequency of your seizures doesn’t necessarily mean that your tumour has returned or is regrowing.
Treatment of seizures in people living with a brain tumour can be particularly complex and difficult due to the additional effects that having a brain tumour causes. Treatments include:
Depending on your diagnosis, some seizure treatments may not suitable for you or you may have to try several treatments before you find the one that is best for you.
One of the ways to cope with seizures is to identify any particular triggers for you and lessen your exposure to them.
There are lots of strategies for making sure you're as safe as possible when you do have a seizure or you're better prepared to care for somebody who may experience seizures.
Join one of our our Online Support Communities for more tips about coping with a brain tumour diagnosis, from people who truly understand what you're going through.
If you've been diagnosed with a brain tumour, you must tell the DVLA (DVA in Northern Ireland) as soon as possible.
If you've not yet given up your licence or you've had your licence returned after treatment, you must stop driving and tell the DVLA if you have a seizure of any type. This is a legal requirement.
Whether you can apply to have your licence returned will depend on various factors such as:
If you're the partner, family member or friend of someone recently diagnosed with brain tumour-related epilepsy, you may find yourself in the role of carer, particularly if their seizures are unpredictable or more severe.
It's important you know what to do to keep them safe when they have a seizure, but this will depend on the type of seizure they're having.
If a seizure continues for more than 5 minutes or occur repeatedly without time to recover in between, emergency (rescue) medication should be given and an ambulance should be called immediately.
Find out more about seizures (epilepsy) and brain tumours - including more information about what happens during different seizures - in the full fact sheet.
Find out more about the treatment for seizures (epilepsy) and brain tumours, including ketogenic diet and cannabis-derived products.
Download our information about living with seizures in a printable format.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
support@thebraintumourcharity.org
Phone lines open Mon-Fri, 09:00-17:00
clinicaltrials@thebraintumourcharity.org
You can also join our active online community - Join our online support groups.