Coping with brain tumour epilepsy and seizures

Here we offer knowledge and tips on coping with brain tumour epilepsy. Find ways to cope with the practical and emotional impact of living with epilepsy or experiencing seizures.

On this page, we’ll discuss:

• The emotional impact of epilepsy
• Identifying triggers
• Medicine for coping with brain tumour epilepsy
• Using the BRIAN app to track seizures
• Staying safe with epilepsy
• Caring for someone having a seizure

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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.

If you have any questions or would like to talk, our kind and approachable Support Team is here to help.

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 it’s important to be aware of the psychological impact of brain tumour epilepsy.

It can be difficult 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 that this is a common way to feel and to speak to your GP and your loved ones if you notice this.

If you experience suicidal thoughts, call 999 or contact your GP urgently. Alternatively, there are many other organisations that can help you, such as the Samaritans who you can call on 116 123.

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Dealing with the emotional impact of epilepsy

If you need help with the emotional side of coping with brain tumour epilepsy, talk to your Clinical Nurse Specialist or GP. They can provide or signpost you to emotional, psychological and practical support. 

Tell your medical team about any changes to your seizure activities or frequency. They can work with you and your GP to find the best treatment for you to reduce the frequency of seizures and reduce the emotional load.

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. 

If you would like to talk to a counsellor, we offer a free counselling service.

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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, you have to tell the DVLA if you have a seizure of any type. This is a legal requirement. You will have to surrender your driving licence. 

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. 

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Medicine for coping with brain tumour epilepsy

Depending on your diagnosis, your medical team might give you drugs for coping with brain tumour epilepsy. These are sometimes called anti-epileptic drugs, or anti-convulsants.

Some anti-convulsants that are often used are:

• Levetiracetam, known as Keppra®
• clobazam
• carbamazepine, known as Tegretol®
• sodium valproate, known as Epilim®
• topiramate
• phenytoin, known as Epanutin®
• lamotrigine, known as Lamictal®

If you are prescribed anti-epileptic drugs, it may take some time to find the right type and dosage for you. 

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Using the BRIAN app to track seizures

We have developed an app that helps people cope with their brain tumour diagnosis. This app is called BRIAN.

BRIAN has a large amount of functionality. This includes keeping track of treatment, finding information, setting and completing challenges, monitoring medication, and finding other people in the brain tumour community.

But, BRIAN also allows you to track seizures.

This could be very useful in taking steps to understanding your seizures. And, it could help your medical team tailor your treatment.

Anxious about having a seizure?

Not knowing when your seizures might happen can make you feel insecure about being out in public or alone at home. Use BRIAN’s seizure tracker to plot your seizures against possible triggers, so you can try to identify and avoid them.

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Staying safe with epilepsy

Brain tumour related epilepsy can be difficult to control. So, safety may be an issue depending on the type of seizure you have.

It may be worth carrying out 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.

Adjustments to your home and lifestyle may include:

• Choosing cushioned flooring and using protective covers on sharp edges
• Using a shower chair
• Giving someone you trust a key to your house in case of an emergency
• Having someone with you in certain situations e.g. using matches, dangerous equipment, bathing a child, using certain tools/equipment

Discuss your condition with your medical team. Then you can make decisions on what is best to avoid and what can safely be done

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 sleep seizures.

There are also seizure alert dogs. These dogs are 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 medical ID products, like a medical ID card or medical ID jewellery. These hold information about your seizures, medication and how you like to be helped. 

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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. This is especially important if their seizures are unpredictable or more severe.

So, 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 occurs repeatedly without recovery in between, emergency (rescue) medication should be given and/or an ambulance called immediately.

Here’s what to do in the case of:

Focal seizures

Depending on whether it’s a focal aware or focal impaired awareness seizure, the person may not be aware of their surroundings or what they’re doing.

Do:

• Guide the person from danger
  Be calmly reassuring
• Time their seizure
• Stay with them until recovery is complete
• Explain anything to them that they may have missed or forgotten 

Don’t:

• Restrain them
• Act in a way that could frighten them, e.g. shout at them or make sudden movements
• Assume they’re aware of what’s happening or what has happened
• Give them anything to eat or drink unless they’re fully recovered
• Try to bring them round

Call the ambulance if:

• You know it’s their first seizure
• The seizure lasts more than 5 minutes
• They’re injured during the seizure
• You believe they need urgent medical attention 

Generalised (tonic-clonic) seizures

These are what most people think of as epilepsy, when the person falls to the ground and jerks or convulses. 

Do:

• Protect them from injury by removing any nearby harmful objects
• Cushion their head
• Be calmly reassuring
• Time their seizure
• Put them in the recovery position and loosen any tight clothing around the neck to aid breathing, once the seizure has finished
• Stay with them until recovery is complete and help them with reorientation e.g. by telling them where they are and what happened

Don’t

• Restrain their movements or try to move them, unless they’re in danger
• Put anything in their mouths or give them anything to eat or drink unless they’re fully recovered
• Try to bring them around

Call an ambulance if:

• You know it’s their first seizure
• The seizures last more than 5 minutes
• They do not regain full consciousness after the seizure or in between multiple seizures
• They’re injured during the seizure
• You believe they need urgent medical attention. This may be if they are having difficulty breathing or if the seizure occurs in the water, for example

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