Living with epilepsy
Heather explains her experiences with epilepsy, including having her first seizure and how she learned to cope.
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).
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 .
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.
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.
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.
This will depend on:
Seizures are grouped according to:
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.
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.
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.
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 these treatments, download the full fact sheet at the bottom of this page.
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 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, 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.
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.
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.
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:
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.
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.
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.
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:
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01252 749 999
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