Coping with brain tumour related epilepsy

Find ways to cope with the practical and emotional impact of living with epilepsy or experiencing seizures.

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.

The emotional impact of epilepsy

Having seizures and being diagnosed with epilepsy on top of the diagnosis of a brain tumour can be overwhelming. You may feel frightened, worried, anxious, depressed, angry – or all of these at various times. You may be worried by the unpredictability of seizures and about having a seizure in public, plus the reaction this can bring, as many people still don’t understand epilepsy. This can lead to a sense of insecurity.

People sometimes mention feeling socially isolated and that it’s difficult to make and maintain social relationships, work etc. You may also be unable to drive, or have other visible effects that are due to the brain tumour and/or its treatment, e.g. speech or movement difficulties, hair loss, sight problems or weight gain from steroids.

All people react differently, but the psychological impact (often never knowing when a seizure might happen) and the frustration caused by seizures and the feeling of losing control of your body should not be underestimated. In addition, seizures themselves may affect the way the brain works and make people more prone to depression and anxiety.

It can be helpful to know this is a common way to feel.

Dealing with the emotional impact of epilepsy

Talk to your Clinical Nurse Specialist or GP - they can provide or signpost you to emotion, psychological and practical support. 

You can also talk to close friends, relatives or a counsellor about how you are feeling. Alternatively, our online brain tumour support groups are a place you can share worries and fears with others who are experiencing the same difficulties. 

Identifying 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.

If you've been diagnosed with a brain tumour, you must tell the DVLA (DVA) as soon as possible. Find out more about brain tumours and driving.

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. You will have to surrender your driving license. 

Whether you can apply to have your licence returned will depend on various factors such as:

• the occurrence and type of seizures
• the restrictions applied because of your brain tumour. 

Staying safe with epilepsy

As brain tumour related epilepsy is often difficult to control, safety may be an issue depending on the type of seizure you have. It may be worth carrying our your own 'risk assessment' to see what safety measures you could put in place. 

Staying safe at home

There are lots of things your 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. 

Alarms

You may find it useful to have an alarm that can alert family, friends or work colleagues. These include seizure alarms, fall call alarms and even a safety pillow if you have asleep seizures.

There are also seizure alert dogs, specially trained to give a 10-55 minute warning of an oncoming seizure, allowing the person to find a place of safety.

Medical ID cards/jewellery

Some people choose to carry a medical ID card or wear medical ID jewellery, on which you can give information about your seizures, medication and how you like to be helped. 

Caring for someone having a seizure

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 or 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.

If a seizure continues for more than 5 minutes, or occur repeatedly without recover in between, emergency (rescue) medication should be given and/or an ambulance called immediately.