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What is Epilepsy?

Last updated on 4th May 2023

In the UK, there are around 600,000 people who suffer from epilepsy, which equates to around 1% of the population. According to the charity Voice for Epilepsy, it is considered the fourth most common neurological condition with over 40 different types. What’s more, approximately 1 in every 26 people will develop epilepsy at some point in their life.

What is epilepsy?

Epilepsy is a brain condition that causes the sufferer to experience frequent seizures, commonly referred to as “epileptic fits”. Whilst many people have experienced a seizure, not all are diagnosed with epilepsy. Epilepsy tends to be diagnosed when the risk is that the person will have repeated seizures.

Epilepsy starts at any age and there are many different types. One person’s epilepsy is almost always different to another person’s epilepsy. For some types, the epilepsy can be time-limited, but for many it is a life-long medical condition.

What are the signs and symptoms of epilepsy?

Epilepsy is characterised by seizures. A seizure is the main sign and symptom that brings about a diagnosis of the condition. Epileptic seizures are caused by a sudden disruption in the brain’s functioning caused by electrical signals misfiring intensely.

There are lots of different types of seizure and what happens to a person during a seizure depends on which part of their brain is affected and how much of the brain is affected. Some types of seizures involve the whole body and cause the person to fall to the ground and jerk. Other types are more subtle and cause a person to lose awareness of their surroundings, blank out, go stiff, or behave oddly.

Showing Symptoms of Epilepsy

What are the different types of epileptic seizures?

There are several types of epileptic seizure. The type a person has can vary or it can often be limited to a certain type depending on the type of epilepsy the person has. Generally, seizures are separated into Focal Seizure or Generalised Seizure types. A focal seizure is one that starts in one side of the brain. Occasionally, these do spread to involve both sides. A generalised seizure is one where the whole brain is affected from its onset.

These are the main types of seizure:

  • Focal seizures.
  • Tonic-clonic seizures.
  • Absence seizures.
  • Myoclonic seizures.
  • Tonic seizures.
  • Atonic seizures.
  • Non-epileptic seizures.

Focal seizures

As described, a focal seizure starts in one side of the brain and mostly affects that side. This type of seizure used to be called “partial seizure”. Some focal seizures are called focal aware seizures, and this is because the person is aware that they are having a seizure even if they are unable to move around or talk. This type of seizure can happen on its own without turning into another type of seizure.

The majority of focal seizures do not last very long. They can last from a few seconds to a couple of minutes. They can involve the muscles or may not. Instead, non-motor focal seizures can involve sensations, thinking and emotions.

Tonic-clonic seizures

When people talk about seizures, it is tonic-clonic seizures that most people easily recognise. These seizures used to be called grand mal seizures. This type of seizure usually has a generalised onset, so affects both sides of the brain. They can start in one side of the brain before moving across to the other side of the brain.

A tonic-clonic seizure is so named because there are two phases – the tonic phase and the clonic phase. In the tonic phase, the person loses consciousness. This means that they are not aware of what is happening to them throughout the seizure. The muscles all go stiff, and the person falls to the floor if they’re standing up. Sometimes, someone who is at the start of a tonic-clonic seizure may make a strange noise. This is because air may push out of their lungs past their vocal cords. It can make it sound like the person is crying out in distress. The person may also bite their tongue or the insides of their mouth.

In the clonic phase, the person’s limbs begin to jerk quickly in a rhythm. They may also lose control of some of their bodily functions such as their bowel and/or bladder. Sometimes, the person’s breathing is affected and they may get a blue tinge around their mouth.

Sometimes a person will sense that they’re about to have a tonic-clonic seizure. The lead-up to this kind of seizure can involve a focal seizure where they have a sense of what is happening. They may therefore feel frightened or they may think they can smell something that isn’t there.

Tonic-clonic seizures can last between one and three minutes. However, if they last longer than five minutes, medics call this status epilepticus and the person needs emergency medical help.

After the tonic-clonic seizure, the person’s muscles may ache and they may have a headache. They are also likely to feel very tired and sometimes unwell. They can also feel confused or have memory issues. Many people go into a deep sleep after a seizure. Unfortunately, some people may feel scared and confused and they can act in strange ways.

Many people recover from tonic-clonic seizures in a couple of hours but for some it can take them a few days to feel back to normal. Todd’s Paralysis may occur, which is a temporary paralysis of a part of the body, which usually goes away. It can last for a few minutes to around 36 hours after the onset of the seizure.

Absence seizures

Absence seizures fall into two types: typical and atypical. Typical absence seizures cause a person to stop what they are doing momentarily. They may stop speaking, they may stare or appear as if they’re daydreaming. They do not fall to the ground and many people do not notice that someone has had an absence seizure – even the person themselves.

Typical absence seizures can cause little movements in the eyelids or slight jerks in the limbs. In absence seizures, the person isn’t aware that this is happening and has no control over it. They cannot be “snapped out” of the seizure by talking to them or touching them. Some people have this kind of seizure many times a day. They often happen in a cluster, one seizure followed by others. People notice that they tend to happen more when they are going to sleep or waking up.

This type of seizure used to be called a petit mal seizure and they almost always start happening when someone is a child or young adult.

Atypical absence seizures are similar to typical ones except they last longer. The onset and end of the seizure happen much more slowly. The person might continue to move around, but their muscles may appear floppier so they look clumsier. The person can often respond during atypical absence seizures.

Whilst atypical absence seizures can happen at any age, they are most likely to happen to someone who already has learning disabilities or brain conditions.

Absence seizures usually last under 10 seconds, but the clustering nature means that they can appear to last much longer. After the seizure, the person normally continues what they were doing before. They may feel confused if there has been a cluster of seizures close together.

Myoclonic seizures

Myoclonic seizures can happen as both focal and general onset seizures. They are characterised by sudden jerks and are very short in their length. This means that they are usually too short for a person to become unconscious. The jerking of limbs can be mild, often similar to a twitch, but it can also be more severe. Sometimes these jerks can make a person drop what they are holding or make them fall over. This type of seizure usually lasts under a second, but they can occur in clusters. They also have few after-effects, with sufferers able to go on with their day like normal afterwards.

Tonic seizures

Tonic seizures cause the muscles to stiffen. If a person is standing up, they will likely fall to the floor. The person’s neck tends to extend, and their eyes roll upwards with their eyelids wide open. Their arms sometimes rise and their legs contract or stretch. Sometimes the person cries out and they may even stop breathing whilst the seizure is happening.

Tonic seizures last for a few seconds or up to around two minutes. They can also affect just one side of the body if they have a focal rather than generalised onset. Once the seizure is over, the muscles relax. The person may then feel confused or sleepy.

Atonic seizures

Atonic seizures can have both focal and generalised onsets. They are sometimes called a “drop attack”. This is because the muscles suddenly go limp and the person falls to the floor. Often, the person ends up with injuries as a result. Atonic seizures are short and usually happen in under two seconds. As soon as the seizure is over, the muscle tone returns to normal.

Non-epileptic seizures

Whilst we are discussing epilepsy, it is worthwhile noting that there are other, non-epileptic causes of seizures.

Febrile seizures

Febrile seizures occur in children and are caused by a sudden increase in body temperature. Around 3-4% of all children under the age of 6 will have a febrile seizure.

Dissociative seizures

This type of seizure is not caused by electrical activity within the brain so is not technically epilepsy. However, they are often mistaken as such. They are characterised by uncontrolled movements, behaviours or sensations but the brain’s electrical activity is not responsible. Instead, they are thought to be the result of a distressing trigger affecting the body. Experts believe that the body “shuts down” if triggered to protect the person from suffering harm. The seizures can look like an epileptic seizure but sometimes they appear to be more like the person is fainting.

Around 1 in 5 people who are admitted to hospital with a seizure are thought to have had a dissociative seizure. Many of these people are often misdiagnosed as having had an epileptic seizure first, however. It is possible to experience both epileptic and dissociative seizures.

Provoked seizures

Provoked seizures are those which happen as a result of another condition. This can be following a trauma, low blood sugar levels, severe alcoholism, low blood sodium, as well as drug abuse.

Checking blood sugars

The difference between epilepsy and seizures

Seizures are defined as being a one-off occurrence whereas epilepsy is diagnosed by an individual having had two or more unprovoked seizures. Seizures of any type could be a one-off occurrence and, at first, many epileptics are thought to have had a one-off seizure before a subsequent one occurs.

What causes epilepsy?

Researchers are still looking into the causes of some types of epilepsy but they do have some answers already. The cause of epilepsy largely depends on the type of epilepsy a person has.

However, some possible causes include:

  • Brain tumours.
  • Brain damage (i.e., due to a head injury, infection, traumatic birth, or stroke).
  • Genetics and/or chromosomal abnormalities.
  • The brain’s development before birth.

Despite the listed possible causes, for over one third of people with the condition, there is no obvious or known cause.

What are the different types of epilepsy?

There are many different types of epilepsy that affect people.

These include:

  • Epilepsy syndromes:
    – Childhood absence epilepsy (CAE).
    – Juvenile myoclonic epilepsy (JME).
    – Genetic epilepsy with febrile seizures plus (GEFS+).
  • Rett syndrome.
  • Neurofibromatosis 1 (NF-1).
  • Tuberous sclerosis.
  • Fragile X syndrome.

Epilepsy syndromes

Epilepsy syndromes such as CAE, JME and GEFS+ tend to be caused by genes. They are often the result of a fault in a specific gene. In GEFS+, there is commonly a mutation with the SCN1A gene. There are over 40 different epilepsy syndromes and epilepsy also forms part of other syndromic conditions.

Rett syndrome

Rett syndrome is a genetic disorder that is rare. It affects the development of the brain and results in severe physical and mental disabilities. It tends to affect more girls than boys.

Neurofibromatosis 1

NF-1 is a genetic disorder that causes the growth of tumours along the nerves. Whilst mostly benign, the tumours cause a variety of symptoms which for some people includes epilepsy.

Tuberous sclerosis

Tuberous sclerosis is also a genetic condition that causes benign growths. If a growth appears in the brain, it can cause epilepsy as a result.

Fragile X syndrome

This syndrome is caused by a fault on the X chromosome. There is a wide range of symptoms with fragile X syndrome and epilepsy occurs in around 13% of boys with the condition and around 6% of girls.

Who is more at risk of epilepsy?

Epilepsy develops at any age but often appears in childhood. However, it often occurs in older adults too, especially those who have suffered a stroke and may have some form of brain damage.

How to help someone with epilepsy

It’s very important that we look out for those with epilepsy as they are incredibly vulnerable. If you spot someone having a seizure, the most important thing to do first of all is to seek medical assistance. This is especially important if you know that the person has not had a seizure before or if they are not yet diagnosed with epilepsy.

When someone is having a tonic-clonic seizure, it is important to protect them from any injuries that may occur whilst they’re seizing. This may mean removing any harmful objects from nearby or removing a scarf or lanyard from around the person’s neck. If possible, you should take notice of what time the seizure started and how long it lasted. This information is important to pass on to the professionals.

You should not attempt to move the person but should try to cushion their head if possible. If you do not know the person, it’s important to look for any epilepsy awareness jewellery or badges that they may be wearing. Having as much information as possible will greatly help the medical team when they arrive.

Once the jerking has stopped, you should put the person in the recovery position and stay with them until medical help arrives or until they have recovered. Of course, it’s important that you stay calm throughout and be reassuring to the person when they are aware you’re there. Of course, if the seizure has caused the person to soil themselves, you should also try to maintain their dignity for them wherever possible.

Calling an ambulance isn’t always necessary. However, you should always call an ambulance if:

  • The person has never had a seizure before.
  • The seizure lasts for more than five minutes.
  • They have more than one tonic-clonic seizure in quick succession and didn’t regain consciousness in between.
  • They are injured as a result of the seizure.
  • They are not breathing normally once the seizure has stopped.
Out of breath due to epilepsy

Living with epilepsy

Living with epilepsy is different for everyone. For some people, it may just be a simple case of remembering to take their medication each day and attending hospital check-up appointments. For others, the story is very much different. Many experience a reduction in their mobility, they’re unable to work or attend school and their social interaction and relationships are affected by their condition.

Epilepsy and work

Whilst many jobs are possible for those with epilepsy, there are some restrictions. For example, most epileptics are not allowed to drive unless they have not had a seizure within a set period. This can limit their work opportunities and flexibility. They are also not permitted to be airline pilots or have other transport roles such as truck drivers or divers.

Epilepsy and the home

Epileptics may need to make some adjustments to their home environments. This includes having bathroom doors that open outwards in case they have a seizure within the bathroom making it difficult for someone to access it to help them. They also often have grab bars and shatter-proof shower screens, and do not use plugs in the bath.

In the kitchen, many people have auto shut-off appliances should they have a seizure whilst they are cooking. Also, any sharp edges on furniture are often covered in case they unexpectedly fall.

Many people with epilepsy avoid climbing on ladders or standing on anything at height in case they fall. They also have a system where they check in with their friends or family at a certain time each day so that help can be called if they fail to respond. This is especially important if someone lives alone.

Alarms can also be fitted to a person’s bed that sound when seizure activity is recognised. This can alert a member of the household to come and help the person who is having a seizure.

How is epilepsy diagnosed?

Every day, around 87 people are diagnosed with epilepsy in the UK. Normally, a person has a seizure which then leads to a diagnosis after tests at hospital.

Usually, a diagnosis is reached by a specialist – normally a neurologist. However, for children, it is often diagnosed by a paediatrician. The specialist reaches the diagnosis by taking a full history as well as a description of the person’s symptoms. Tests such as an EEG are performed which records the person’s brainwaves. There may also be blood tests and brain scans such as an MRI are carried out. If a genetic syndrome is suspected, the person may also be sent for genetic tests to see if their epilepsy is related.

How is epilepsy treated?

Most people with epilepsy are treated with medication. These are commonly called anti-seizure medications (ASMs) or anti-epileptic drugs (AEDs). Whilst these medicines do not cure the condition, they reduce or even stop completely the occurrence of seizures. They can also reduce the severity of a seizure should one occur.

About 50% of people with epilepsy find that the first medicine that they are prescribed works well and stops their seizures. However, others may need to experiment with different medications to find one that works for them. Some people may also need to combine different medications to reduce their seizures.

For a third of people, medications do not seem to work to control their seizures. There are some other types of treatment available and these include surgery such as brain surgery or vagus nerve stimulation. Special diets such as the ketogenic diet may also help to reduce the occurrence or severity of seizures in some people.

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About the author

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Laura Allan

Laura is a former Modern Foreign Languages teacher who now works as a writer and translator. She is also acting Chair of Governors at her children’s primary school. Outside of work, Laura enjoys running and performing in amateur productions.

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