Living with epilepsy
Heather explains her experiences with epilepsy, including having her first seizure and how she learned to cope.
Epileptic seizures are the most common first symptom leading to a brain tumour diagnosis in adults. Learn more about epilepsy, why brain tumours can cause seizures and possible treatments.
Epilepsy is defined as the tendency to have repeated seizures, so it is usually only diagnosed after you have had more than one seizure. You are more likely to develop epilepsy if you have a slow growing, low grade tumour, but can also 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.
A seizure is a short episode of symptoms caused when there is a burst of abnormal electrical activity in the brain that disturbs the way the brain normally works, 'mixing up' the messages. There are many different types of seizures, and they can range from 'feeling a bit strange' or 'absent' to convulsive seizures, twitching of limbs and even loss of consciousness. They are sometimes called 'fits'.
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 factors can interfere with the normal electrical activity in the brain.
Around 60% of brain tumours patients experience a seizure at least once.
Seizures are normally grouped into two categories, depending on how much of the brain is affected.
These are seizures that begin in both sides of the brain at the same time. There are six main types of generalised seizure and most types result in the person becoming unconscious, even only for a few seconds and they are unlikely to remember what happened.
Generalised seizures are rarely associated with brain tumours, but some focal seizures can become generalised if they spread to both sides of the brain. This is called a secondary generalised seizure and is often a tonic-clonic type of seizure.
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.
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 for 30 minutes).
Although epilepsy is more likely in low grade tumours and in tumours in the cortex, the exact reasons why these brain tumours can cause epilepsy are not fully understood. For example, it is thought that epileptic seizures in patients with brain tumours do not start in the tumours themselves, but from the areas in the brain next to the tumour.
Areas around some types of brain tumours are characterised by brain cells that develop abnormally which is known as cortical dysplasia. The abnormal cells fire more frequently, causing uncontrolled, disorganised electrical activity in the brain (hyperexcitability), which can cause seizures.
It is not clear whether cortical dysplasia plays a role in brain tumour-related epilepsy, as complete removal of the tumour often results in seizure freedom, and secondly because cortical dysplasia is not present in all tumour types that are associated with seizures.
There has been research suggesting that certain 'neurotransmitters' and the pathways down which they send their signals may be involved. The brain consists of over 100 billion nerve cells that communicate with one another by releasing chemicals (neurotransmitters) that excite and inhibit the nerve cells. An imbalance between some of these neurotransmitters can lead to too many nerve cells firing, resulting in the 'electrical storm' that is a seizure.
The presence of a tumour can cause changes to the structure or the chemicals of the cells, both within the tumour and the tissue surrounding it, thereby affecting the electrical activity of the brain.
It is important to know that an increase in the frequency of your seizures does not necessarily mean that your tumour has returned or is re-growing.
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.
AEDs cannot cure epilepsy, but they are a type of medicine that can help to prevent the occurrence of episodes. Some people with brain tumours find their epilepsy does not respond so well to drugs.
Surgery can reduce or stop the occurrence of episodes completely for a very high proportion of people suffering from epilepsy (with or without brain tumours). 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. In some cases, such as the ketogenic diet this is because whether they are effective is still the subject of scientific research.
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.
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 and emotional support.
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.
Read more about brain tumours and driving.
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.
Get more information and advice about living with a brain tumour.
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.
Read more about caring for someone with a brain tumour.
If you or a loved one has been diagnosed with a brain tumour, we offer a range of support.
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Page last reviewed: 12/2014
Next review date: Currently under review
Find out more about Epilepsy (seizures) and brain tumours in the full fact sheet - including more information about treatments, first aid for carers and safety in the home.
Find out more about Epilepsy (seizures) and brain tumours in the Clear print version, designed to RNIB guidelines - including more information about treatments, first aid for carers and safety in the home.
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