Seizures (epilepsy) and brain tumours

Seizures are the most common first (onset) symptom leading to a brain tumour diagnosis in adults. Up to 60% of brain tumour patients will experience at least one seizure. Learn more about seizures associated with brain tumours, what happens during these types of seizure, possible treatments and help to live with seizures (brain tumour-related epilepsy).

Download our factsheet about seizures and brain tumours.

What is a seizure?

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.

Types of seizures

When people hear the term seizure, they often think of convulsive seizures. This is where the person loses consciousness, their body goes stiff and they fall to the floor with their limbs jerking.

However, there are many different types of seizures.

They can range from feeling a bit strange or absent (spaced out), to the convulsive seizures sometimes referred to as fits, but more correctly called tonic-clonic seizures. Tonic-clonic seizures are rare in brain tumour patients.

What is epilepsy?

Epilepsy is the tendency to have repeated seizures, so it's usually only diagnosed after you have had more than one seizure. There are more than 40 types of epilepsy of which brain tumour-related epilepsy (BTRE) is one. it has differences to other forms of epilepsy.

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.

Am I likely to have seizures/BTRE?

Although up to 60% of brain tumour patients will experience at least one seizure, this means 40% WON'T have seizures. And those that do, may have only one, or only have them for a short period of time, e.g. due to swelling of the brain after surgery.

You are more likely to have a seizure or develop BTRE if you have a slow growing, low grade tumour, but this doesn't mean that you will have seizrues. You're also more likely to develop epilepsy if your tumour is in one of the lobes of the cerebrum (cerebral cortex) or the meninges (the membranes that cover and protect the brain and spinal cord), rather than deep in the brain or in the brainstem or cerebellum.

You can develop epilepsy if you have a high grade tumour. In this case, your tumour is likely to be smaller than high grade tumours not associated with epilepsy.

What is likely to happen if I have a seizure?

This will depend on:

  • the type of seizure you have
  • where the tumour is in your brain.

Types of seizure

Seizures are grouped according to:

Where seizures start in the brain (the onset)

Focal onset (previously called partial seizures)

  • These start in and only affect one part of the brain
  • They're the most common type of seizures associated with brain tumours.

Focal to bilateral

  • These start as a focal seizure, then spread to both sides of the brain.

Generalised onset

  • These start in and affect both sides of the brain at the same time
  • They start without warning
  • They're rarely associated with brain tumours, but when they do occur they are usually a type known as tonic-clonic. (See the downloadable full fact sheet for more information).

Unknown onset

  • When it's not known where in the brain they started.
    This can happen if the person is asleep or alone and the seizure wasn't witnessed.

Level of awareness (aware or impaired awareness)

Focal aware (previously called simple partial seizures)

  • Only a small part of one lobe of the brain is affected
  • You're fully aware, even if you can't speak
  • You'll remember the seizure afterwards, even if you can't describe it.

Focal impaired awareness (previously called complex partial seizures)

  • A larger part of one side of the brain is affected
  • Your consciousness is affected - you may be confused, unaware of what you are doing
  • You are unlikely to remember the seizure afterwards
  • You may feel tired afterwards.

Generalised seizures

  • Both sides of the brain are affected
  • Your awareness will affected in some way
  • Are rarely associated with brain tumours.

Whether your movement is affected

Motor seizures

  • involves a change in your movement,
    e.g. plucking at your clothes, or your muscles going stiff before making jerking movements.

Non-motor seizures

  • there is no change in your movement, but there may be sensory changes, e.g. in your vision, smell or hearing.
None

Your seizures may not be exactly as one of the types described, but they will usually last the same time and follow the same pattern each time they happen. For some people, however, their seizures do not follow a pattern nor last the same time.

Location in the brain

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.

Look at the diagram below and work our where your tumour is. The effects you have will relate to the functions listed for that area.

For more detailed information about what you might experience, download the full fact sheet Seizures (epilepsy) and brain tumours - introduction, at the bottom of this page.

a graphic diagram of the different areas of the brain and their functions

Status epilepticus

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 a seizure continues for more than 5 minutes or repeated seizures occur without recovery in between, emergency (rescue) medication should be given and/or an ambulance should be called - do NOT wait.

Epilepsy treatments

Treatment of seizures in people with a brain tumour can be particularly complex and difficult due to the additional effects that having a brain tumour causes. The variety of tumours (type, location and grade), tumour effects and treatments all interact with the variety of seizure types.

As a result, some treatments for epilepsy are not suitable for you, or you may have to try several treatments before you find the one that is best for you.

Below is a list of treatments for epilepsy. For more information about treatments download our fact sheet.

Anti-epileptic drugs (AEDs)

AEDs are the main form of treatment for most people with epilepsy, including BTRE.

AEDs cannot cure epilepsy, but they can help stop seizures from happening. You may have to have more than one AED.

As with all medicines, AEDs can cause side-effects, such as skin rashes, bowel problems, fatigue and headaches.
You should report any skin rashes, or any severe reaction to your doctor.

Some people with brain tumours find their epilepsy does not respond so well to drugs.

Surgery

Surgery to remove the area of the brain causing the seizures is occasionally used to reduce or stop seizures. However, the presence of a brain tumour makes things more complicated, and surgery might not be the most appropriate treatment option.

Other treatments and complementary therapies

Other treatments, though used in the treatment of non-brain tumour-related epilepsy, are not suitable or are rarely used for brain tumour related epilepsy.

There's a lot of information online and elsewhere about various complementary therapies for the treatment of epilepsy. Some people say that various complementary therapies work for them. However, as yet there's no scientific evidence to suggest that they do reduce seizures.

If you decide to use a complementary treatment, speak to your doctor first, who will able to advise if the treatment may cause problems with your epilepsy or AEDs, or other treatments you're having for your brain tumour.

This includes any dietary or vitamin supplements and, particularly, herbal medicines, as some (such as St John's Wort) can interfere with AEDs and lead to loss of seizure control.

In some cases, such as the ketogenic diet this is because they need to be done under the supervision of a healthcare professional; or in the case of cannabis-derived products, there are legal issues, as well as possible interactions with other medications you may be taking.

Living with epilepsy

Being told you have epilepsy as well as a brain tumour, can affect people in different ways – some people are relieved that they know what is causing some of their symptoms and can now have treatment; others find it quite hard. This is quite normal.

Talk to your health team or to the friendly staff on our Support & Info Line – they can provide practical as well as emotional support.

Identifying the triggers

Seizures often have particular triggers (such as lack of sleep, stress or alcohol). Identifying them allows people to manage their condition by avoiding those triggers as much as possible.

Driving

The DVLA (Driver Vehicle Licensing Agency) requires people with a brain tumour or epilepsy diagnosis to give up their license. How long it will be until you are able to reapply for you license depends on:

  • Your type of tumour
  • Where it is in the brain
  • Your symptoms
  • The treatment you had
  • Whether you have any residual impairment likely to affect safe driving
  • The time since your last seizure
  • The type of seizures you have/had
  • The risk of further symptoms

If you have not yet given up your license, or you have had your license returned after brain tumour treatment, you must stop driving and tell the DVLA if you have a seizure - of any type. This is a legal requirement and you will have to surrender your driving license.

Brain tumours and driving

Safety

As brain tumour-related epilepsy is often difficult to control, safety may be an issue depending on the type of seizure you have. There are lots of things you can do to make your home safer in case you fall when having a seizure, such as choosing cushioned flooring and using protective covers on sharp edges. You may also find it useful to have an alarm that can alert family or friends, these include seizure alarms, fall call alarms and even a safety pillow if you have asleep seizures. Some people also choose to carry a medical ID card, on which you can give information about your seizures, medication and how you like to be helped.

Living with a brain tumour.

Caring for someone with epilepsy

If you are a partner, family member or friend of someone recently diagnosed with epilepsy due to a brain tumour, you may find yourself in the role of a carer, particularly if their seizures are unpredictable or more severe. It is important to know what to do to keep them safe when they have a seizure. We have plenty of advice on our epilepsy fact sheet which you can download below.

Caring for someone with a brain tumour.

Get support

If you or a loved one has been diagnosed with a brain tumour, we offer a range of support.

You may also wish to join our friendly and supportive Facebook community.

Page last reviewed: 06/2018

Next review date: 06/2021

logo for the information standard certification logo for the helplines partnership

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:

Information and Support line

0808 800 0004 (free from landlines and mobiles)

support@thebraintumourcharity.org

Phone lines open Mon-Fri, 09:00-17:00

You can also join our active online community on Facebook - find out more about our groups.

We promise to keep your data safe and you can unsubscribe at any time in the future. More information is in our Privacy Policy.