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Epilepsy

Everything you need to know about living well with epilepsy

  • Introduction
  • Types
  • Symptoms
  • Daily Living
  • Support
  • Glossary

Introduction

We’ve put this guide together for people living with epilepsy or for anyone who knows someone with the condition, to help you understand it a little better.

We hope you find answers to some of the questions you may have about what causes epilepsy, what a diagnosis of epilepsy means, and which products and treatments can best help to ease the symptoms of epilepsy. If you are concerned that you may be experiencing any of the symptoms you read here, please see your GP. Any medical information provided here is for informational purposes and does not replace advice given to you by a medical professional.

Introduction

What is epilepsy?

Epilepsy is not one condition but a group of many different conditions that affect the brain and cause seizures. It can start at any age and there are many different types. Some people may have epilepsy for a short period of time, but for many it is a life-long condition. It can occur in people of all ages, races and social classes, although epilepsy is most commonly diagnosed in children and in people over 65. Around 500,000 people in the UK have some form of epilepsy, so it is really common.

Many people think that epilepsy seizures are brought on by flashing lights or patterns, but actually, only a small percentage of people have this type of epilepsy. If you have been given an epilepsy diagnosis, or if you know somebody that has, it is really important to familiarise yourself with what to do if a seizure occurs, or to ensure those close to you understand what to do too. Read our treatments for epilepsy section to find out more.

For more information on epilepsy, see the Epilepsy Society website.

What causes epilepsy?

The human brain is a hive of electrical activity with our brain cells sending constant messages to each other. A seizure can sometimes occur when there is a sudden burst of electrical activity which disrupts how the brain normally works. It is possible for anybody to have a one-off seizure. If you have been given an epilepsy diagnosis, you will most likely have experienced more than one seizure and your doctors strongly believe you may have more.

For the majority of people, what causes epilepsy in their specific case will never be confirmed. However, for others, another health condition is what causes epilepsy, including, but not limited to:

• Stroke

• Brain infection e.g. meningitis

• Severe head injury

• Oxygen deprivation due to birth complications

Some epilepsy types are inherited, meaning that they may run in the family. For more information on the chances of a child inheriting epilepsy from his or her parents, visit the Epilepsy Action website.

Did you know... "Epilepsy is one of the most common, serious neurological conditions in the world."

Main Types of Epilepsy

Read on to find out more about types of epilepsy.

There are generally considered to be two types of epilepsy, but many more types of epileptic seizure. Your doctors will look to find out the underlying cause of epilepsy in each case, which will determine which type of epilepsy you have. In many cases, the cause cannot be found. There are potentially over 40 different seizure types, and some people may experience a combination of these. Doctors will plan your epilepsy treatment around controlling the particular types of seizure you have. Read on to find out more.

Introduction

Here are the main two types of epilepsy:

• Idiopathic (or primary), where no apparent epilepsy causes can be found but it may be inherited

• Symptomatic (or secondary) epilepsy, where doctors can identify what causes epilepsy for each specific case

There is a rare type of epilepsy called ‘reflex epilepsy’, which has very specific triggers that differ from person to person, for example: reading, hot water, music and lights.

There are two main types of seizure, each with different subtypes depending on what part of the brain is affected:

Partial (or focal) seizures: where only a small part of the brain is affected

o Simple focal seizures – a person usually remains conscious and only a small part of one of the brain’s lobes is affected. They may feel ‘strange’ and this type of seizure may be a warning of a further seizure

o Complex focal seizures – a person may feel confused or lose consciousness and this type affects a bigger part of one hemisphere (side) of the brain. It may also cause strange behaviours, such as wandering

Generalised seizures: where most or all of the brain is affected, making the person unconscious and unable to remember the experience. This type of seizure may also begin as a partial or focal seizure and spread across the brain, making it generalised

o Absence (petit mal) seizures – common in children, these seizures may look like daydreaming as the person will look blankly or stare into space and not respond to anything around them

o Tonic seizures – the person’s muscles suddenly stiffen and they may fall backwards

o Atonic seizures – the person may become floppy and fall forwards

o Myoclonic seizures – these cause muscle jerks and often happen with other types of seizure

o Tonic-clonic seizures (grand mal) – these seizures are what people typically think of as ‘epilepsy’ because the person becomes stiff, unconscious and may have convulsions (jerking movements).

The Epilepsy Society website features videos of people experiencing the different types of epilepsy and seizures.

Did you know... "Epilepsy is caused by surges of electrical activity in the brain."

Symptoms of Epilepsy

Read on to find out what the symptoms of epilepsy are and about epilepsy triggers.

The main symptoms of epilepsy include repeated seizures.

An epileptic seizure occurs when the brain has a sudden burst of electrical activity. This may temporarily affect how the brain functions. There are many different types of seizure and each one may present different symptoms. Some people can feel a seizure coming on, whilst other people may have one suddenly and without warning. They can occur both when a person is asleep or awake. Contrary to popular belief, a seizure does not always have to be what we generally see as a ‘fit’ or convulsion.

Introduction

Everyone experiences seizures differently, but a typical seizure may involve:

• Unusual sensations, feelings or movements

• Stiffening of muscles

• Jerking motions

• Falling to the floor

• Loss of awareness

• Remaining aware and alert

• Feeling confused or strange

• Becoming floppy

• Loss of consciousness

• Odd behaviours e.g. wandering

• Staring or looking blankly

Epilepsy Action provides detailed information about epileptic seizures and what type of seizures bring about which symptoms.

It is important to note that not all seizures are caused by epilepsy. Sometimes, a seizure may occur once and then never happen again – this is unlikely to be caused by epilepsy. Children sometimes have febrile convulsions, which are the body’s way of dealing with very high temperatures and fever. If you or a family member has experienced a seizure, it does not necessarily mean that they have epilepsy, but you should always dial 999 for an ambulance if it is an undiagnosed or first-time seizure.

There are treatments for epilepsy available, which help control these seizures and symptoms. Read on to find out more about epilepsy treatments.

Epilepsy triggers

Seizures may sometimes be brought on by certain situations. These epilepsy triggers may include tiredness, lack of sleep, stress, alcohol, and not taking medication. Some people are able to avoid their epilepsy triggers and reduce the chance of them having a seizure.

Diagnosis of epilepsy

An epilepsy diagnosis can often take some time. Many other conditions can cause similar symptoms and you may have to have more than one seizure before a diagnosis can be confirmed.

Doctors will need to know as much detail about your seizures as possible and they might run tests such as:

Electroencephalogram (EEG)

Magnetic resonance imaging (MRI) scan

CT scan (computerised tomography)

However, even these tests cannot always confirm if you have epilepsy.

You can find out more about how a diagnosis of epilepsy is given from Epilepsy Research UK

Epilepsy Society also provides a free advice pack for people who have just received an epilepsy diagnosis, which you can order online.

Did you know... "Around 87 people are diagnosed with epilepsy in the UK every day."

Living with Epilepsy

Many people who have been given a diagnosis of epilepsy are able to live well with their condition.

Here we discuss several aspects of how to live well with epilepsy, including epilepsy treatments, epilepsy diet and exercise and epilepsy and employment.

Epilepsy is likely to affect your daily life in various ways. Most types of epilepsy bring about seizures with little or no warning. Unless you have definite epilepsy triggers, you may feel uncertain as to when and where a seizure might occur. Epilepsy treatments such as medication can help control seizures so the chance of them occurring is reduced. For some people though, it may be harder to find epilepsy treatments that work so seizures may take longer to become controlled or they may not respond to treatment. These people might find that epilepsy has a greater impact on their lives but there is lots of epilepsy support available.

Introduction

Epilepsy products

At NRS Healthcare, we are experts in daily living aids. These are products that are designed to help people live independently if they have a healthcare condition or disability. There are some epilepsy products in our range that may help you, for example:

Seizure Monitor: designed for people who experience grand mal seizures, this helps detect if a seizure occurs at night, and notifies a family member or carer nearby.

Daily Pill Reminder & Timer: designed to help you manage your tablet medication and reminds you when to take your next dose.

GPS Tracker and Fall Sensor: if you experience falls during a seizure and spend time alone either in or out of the home, this device can detect that you have fallen and will send an SMS alert to a programmable number, to alert a family member or friend that you may need help. They will then receive your GPS coordinates to find out where you are.

Auto Dialling Alarm: if you spend time alone at home, or live on you own and experience seizures, you may wish to have an easy way to contact someone close by for assistance. Our Auto Dialling Alarm comes with an emergency pendant which when pressed, will activate the main unit to telephone up to three programmable telephone numbers.

Wrist Worn Emergency Alarm: ideal if you’re out and about and may need help if you experience a seizure. Worn like a watch, this discreet device has a loud alarm to alert people nearby that you need assistance.

We have a team of Occupational Therapist product advisors that can help you find the right epilepsy products to suit your needs – contact them on 0345 121 8111 or email [email protected]

Epilepsy treatments

Treatment for epilepsy aims to control seizures, although not everyone with the condition will need to be treated. It may sometimes be possible to control epilepsy solely by avoiding specific epilepsy triggers, such as sleep deprivation and alcohol.

Some people will need treatment through their life, whilst other people only have epilepsy for a short period so they may or may not require treatment.

Anti-epileptic drugs (AEDs) are usually the first choice of treatment and around 70% of people are able to control their seizures with these. There are many types of AED and each medicine may have different side effects. For more information about AEDs, visit the Epilepsy Society website.

It is possible to treat some types of epilepsy with brain surgery to stop seizures, reduce the number of seizures experienced or make them less severe. There are many types of brain surgery for epilepsy. To find out more about these, visit the Epilepsy Action website.

If surgery is not an option, an alternative may be to implant a small device under the skin of the chest. The device sends electrical messages to the brain. This is called vagus nerve stimulation.

Your epilepsy consultant and GP will work closely with you to find the right epilepsy treatments for you and to monitor your progress.

Helping someone who is having a seizure

If you know someone with epilepsy, it would be beneficial to talk to them about what you should do if they have a seizure. People with certain types of epilepsy may fall and hurt themselves, so learning some first aid would be beneficial. There is a wealth of information about treating injuries on the Red Cross website.

If a person is having a convulsive seizure, it can be very concerning for those around them but usually they will not require medical attention unless their seizure does not stop after 5 minutes. In this case, you should dial 999 for an ambulance.

Epilepsy and employment

Having epilepsy does not necessarily stop someone from doing the job they want, but there are some issues which can affect them at work. For example, if you have seizures, how severe they are and how often you experience them will determine whether your work is affected. It also depends on the type of work you do, and any risks that having seizures at work might bring.

Epilepsy and driving

It’s very likely you will have to stop driving, which can have a big impact on your life. Find out more about driving rules when you have a seizure or a diagnosis of epilepsy by visiting the DVLA website.

Young epilepsy

If you are a young person with epilepsy you may be concerned how the condition will affect your education, hobbies and future. The Young Epilepsy website provides lots of information and advice specific to epilepsy in childhood and teenage years.

Epilepsy diet

Eating a balanced diet when you have any healthcare condition is beneficial to help improve your overall health. Our diet can affect our sleep and activity levels, so it is possible that eating healthily may reduce the risk of seizures for some people.

Your healthcare professionals may recommend a special epilepsy diet to help control seizures by adapting how the brain works due to the levels of fat, carbohydrate and protein that are consumed. The ketogenic diet is sometimes recommended and carried out under the supervision of a dietitian and an epilepsy specialist. There is currently no evidence to suggest that certain types of food trigger seizures in people with epilepsy but some people feel that certain colourings, preservatives, artificial sweeteners and monosodium glutamate (MSG) can be epilepsy triggers for them.

For more information on eating for epilepsy visit the Epilepsy Society website

Exercises for epilepsy

Some people with epilepsy may worry about doing exercise in case they hurt themselves during a seizure. They may not feel they have enough energy to do exercise due to tiredness or medication side effects. However, even gentle exercise can improve your fitness, energy and mood and help to relieve stress. Research shows that exercise can help reduce seizures for some people.

Did you know... "70% of those with epilepsy can successfully control seizures with medication."

Support for epilepsy

Remember, you are not alone!

Receiving an epilepsy diagnosis can be difficult for you and your family. There is a lot of help for epilepsy, with a wide network of healthcare professionals to support you as well as charities and online communities where you can get advice and information or just talk to people dealing with similar experiences.

Many people find it helps them to live well with their condition if they have places to go, and people to talk to for support, advice and reassurance. Being open and talking about your condition may help you to feel more positive. Hearing other people’s stories may also help.

Here, we list some online communities and places you can go for more support for epilepsy.

Introduction

Communities

Epilepsy Action Forum – an online community for people with epilepsy to discuss their condition and how it affects them

Epilepsy Support Facebook Group – an open group on Facebook for people to discuss epilepsy and connect to people across the world with the condition

Epilepsy Support Forum – an online community for people to share experiences of having epilepsy

Resources

Brain & Spine Foundation – a charity that provides information and support to people with neurological problems

Epilepsy Society – a UK charity that provides information and support services to people with epilepsy, as well as medical research into the condition

Epilepsy Sucks UK – a charity that provides anti-suffocation pillows to people with epilepsy to help prevent deaths and increase wellbeing of people with the condition, and their families

Epilepsy Action – a UK charity providing local group services to people with epilepsy, training for schools and professionals, and lots of information about the condition

NHS Choices – provides information about all medical aspects of epilepsy

Young epilepsy – a UK charity that focusses on supporting children and young people under the age of 25, who are diagnosed with epilepsy, by providing information on topics that really matter to them

Did you know... "There are over half a million people with epilepsy in the UK."

Glossary

Unsure what something means? Checkout our Glossary section below.

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of epilepsy as straightforward as possible.


Introduction

Anti-epileptic drugs (AEDs)

– medicines that make the brain less likely to have seizures by altering and reducing the excessive electrical activity (or excitability) of the neurones that normally cause a seizure. Different AEDs work in different ways and have different effects on the brain.

CT scan (computerised tomography)

– a medical procedure that uses X-rays to make detailed pictures of parts of your body and the structures inside your body, including the brain.

Electroencephalogram (EEG)

– a test that detects abnormalities in your brain waves, or in the electrical activity of your brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted onto your scalp. The electrodes detect tiny electrical charges that result from the activity of your brain cells.

Hemisphere

– the brain has two sides with a groove in the middle, with the left side controlling the right side of the body, and vice versa

Ketogenic diet

– a diet which is high in fats and low in carbohydrates and protein. It is no longer recommended for adults with the condition because a high-fat diet is linked to serious health conditions, such as diabetes and cardiovascular disease (CVD)

Lobes

– the brain has four lobes, each with a different function and responsible for different actions and processes i.e. 'frontal' lobe for thinking, memory, movement and behaviour; 'parietal' lobe for language and touch; 'temporal' lobe for hearing and learning, 'occipital' lobe for sight

Vagus nerve stimulation

– a procedure used to treat seizures when seizure drugs are not effective and surgery is not possible. VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed to stimulate the vagus nerve in the neck

Magnetic resonance imaging (MRI)

– a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body


Last updated on 05/02/2019

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