Most people will be familiar with epilepsy to some extent. It’s a condition that many of us might have seen depicted on television, but not come into contact with in real life.
The capacity of epilepsy to cause seizures (or fits, where someone falls to the floor and later begins to jerk) is most often how we see it portrayed.
But there are in fact several different types of epilepsy, and episodes, as well as resulting in fits, can also result in a range of other symptoms.
To discuss the condition in more detail, we got in touch with UK charity Epilepsy Action, and spoke to Senior Advice and Information Officer Kathy Bairstow.
Epilepsy: Who Does it Affect?
It’s estimated that around one percent of the population in the UK (equivalent to over 600,000 people) has epilepsy.
In some cases, a person may learn relatively early on that they have it, but as Kathy explains: ‘an epilepsy diagnosis can come completely out of the blue at any time of life.’ 25 percent of new diagnoses, she adds, are in people aged over 65.
‘At the other end of the age scale,’ Kathy tells us, according to figures from the Epilepsy Council ‘epilepsy affects an estimated 63,400 children and young people aged under 18 in the UK.’
‘One in every 220 children will have a diagnosis of epilepsy. That’s an average of one child with epilepsy in every primary school and 5 in every secondary school.’
Recurring seizures is the primary symptom. These occur when surges of electrical signals in the brain interfere with its function.
But how these affect people can vary, according to where in the brain the surges happen.
‘Seizures can happen when people are both awake or asleep and typically pass in a few seconds or minutes.’ Kathy explains.
Shaking and jerking are common characteristics of seizures, but in some cases they can cause other symptoms such as loss of awareness, deja vu or an odd taste or smell.
‘Some people might injure themselves if they have fallen during a seizure.’ Kathy adds.
In many cases, a seizure will last for less than five minutes; and will stop on its own without requiring treatment.
But in some cases, a seizure may last for longer than this; or a person may experience a cluster of short seizures which go on for more than half an hour in total. The term for this is ‘status epilepticus’.
‘Any type of seizure has the potential to advance into status epilepticus.’ Kathy says.
Where a seizure lasts for more than five minutes, a person will need emergency treatment before this transitions into status epilepticus.
‘During a long convulsive seizure (tonic-clonic seizure), the body struggles to circulate oxygen.’ Kathy explains, and being in this state for a prolonged period has the potential to cause brain damage, or in some cases be fatal.
‘After a seizure, the brain is trying to recover and certain symptoms can occur.’ Kathy tells us. Known as the ‘postictal’ state, this might last for between 5 and 30 minutes, but sometimes longer in the case of a tonic-clonic seizure.
‘This is the type we see most commonly on TV, where someone falls to the floor and shakes.’ Kathy explains.
‘Afterwards people feel really tired and may be drowsy, confused, feel sick, or have a bad headache. After a seizure it’s also common to feel mentally and physically exhausted. This can last for a day or two or sometimes even longer.’
Another common symptom following a seizure is not being able to think clearly or concentrate, Kathy explains. ‘Someone’s short-term memory might also be affected.’
Types of seizure and triggers
There is always some level of electrical activity taking place in the brain, Kathy tells us. Brain cells use these types of signals to communicate with each other.
These electrical signals are essential for normal neurological function, controlling thoughts, senses and physical and mental coordination.
In people with epilepsy, when there is a sudden spike in this electrical activity, these signals become jumbled up, resulting in a seizure.
The area of the brain affected often dictates the nature of signals being sent (and subsequently jumbled up), and therefore the nature of the seizure.
Some people lose awareness of what’s happening around them (these types of seizures are referred to as ‘absences’), or have strange sensations, such as altered taste in the mouth or tingling in the body (simple partial seizures).
Others might make movements they are unaware of (complex partial seizures) or unable to control (myoclonic seizures).
Some seizures might cause someone to become stiff (this is known as a tonic seizure), or fall to the ground and shake (clonic seizure). A tonic-clonic seizure is where someone experiences stiffness and falls to the floor (tonic stage) followed by jerking movements (clonic stage).
Seizures can be set off by certain triggers. These are not the root cause of epilepsy, but can result in a seizure.
Examples of triggers include:
- flashing or flickering lights
- being tired and not getting enough sleep
- alcohol consumption
- using recreational drugs
- skipping a meal
- or having a fever due to illness
If someone who has been prescribed antiepilepsy medicines doesn’t take them, this might also lead to a fit.
However, not everyone with epilepsy has a trigger, and some seizures might occur for seemingly no reason.
There are some causes of epilepsy which doctors can identify, such an infection affecting the brain (such as meningitis), a stroke, or if someone had severe head injury problems during birth, resulting in a loss of oxygen supply to the brain.
However, in more than half of epilepsy cases, the cause is not clear. Some people may have one or more close relatives with the condition, which suggests that it might in some cases be hereditary.
‘Scientists are trying to find out more about how epilepsy might be inherited.’ Kathy explains. ‘Some specific types of seizure, such as childhood absence epilepsy (CAE), juvenile myoclonic epilepsy (JME), photosensitive seizures, generalised epilepsy with febrile seizures plus (GEFS+) and focal seizures, can run in families.’
Kathy goes on to explain that, more commonly though, various forms of epilepsy will be present in families; so if a child does develop the condition, the nature of it may be different to the type their parent or family member has.
There are very particular gene changes which a child might be born with, that results in them developing epilepsy. But while the parents may have the genes which are ultimately inherited, these may not cause epilepsy in the parent; so a child who does not have a parent with epilepsy can still have it.
Getting a diagnosis
Because of the nature of symptoms, it can be hard for someone who has epilepsy to relay details of their seizure to their doctor; when one occurs, they might not be aware of what is happening, and have little or no recollection of it when they recover.
But there are measures a person can take to gather information that might be helpful to a doctor in making a diagnosis.
‘Initial diagnosis can be helped by taking a detailed seizure diary to doctor’s appointments.’ Kathy says. ‘Alternatively, a written description or video from a witness can be really helpful, or if that person also attends the appointment.’
Testing methods for epilepsy might include an electroencephalogram (EEG) or a magnetic resonance imaging (MRI) scan, Kathy goes on to explain. ‘These tests can sometimes suggest a possible cause of epilepsy and the specific types of seizure.’
An EEG measures electrical activity in the brain, via electrodes attached to the patient. This helps to identify the location of the activity in the brain responsible for seizures.
An MRI scan is used to get a picture of the tissues in the brain, which can reveal if there is any structural factor that might be causing epilepsy.
In most cases, through these tests, a specialist will be able to determine what type of epilepsy someone has.
Medicines used in epilepsy
Medication is used in most cases to treat epilepsy.
‘Around 7 in every 10 people with epilepsy can control their seizures with medicines.’ Kathy explains. ‘They don’t cure the epilepsy, but try and stop the seizures happening by changing the levels of chemicals in the brain that control electrical activity.’
Some examples of antiepileptics medicines, or AEDs, are sodium valproate (Epilim), carbamazepine (Carbagen or Tegretol), lamotrigine (Lamictal) and oxcarbazepine (Trileptal). When issuing treatment, a doctor might typically prescribe a low dose to begin with, and increase it by a small amount until seizures stop.
Upon commencing treatment with this type of medicine, it’s not unusual for patients to experience side effects such as tiredness or lethargy, but in many cases these will dissipate after a short time.
But if these medicines are not effective in controlling someone’s seizures, other options may have to be looked at.
‘For some people, surgery might be a consideration.’ There are a number of surgical procedures used in the treatment of epilepsy, Kathy explains, ‘including brain surgery, vagus nerve stimulation (VNS) and deep brain stimulation (DBS).’
‘The surgery, if successful, can either stop seizures, or reduce their frequency and severity.’
Brain surgery might involve the removal of tissue in the brain where seizures are occurring (resection), or a connection being cut to prevent seizure activity spreading (such as a corpus callosotomy or multiple subpial transection).
The goal of brain surgery is to improve patient quality of life. ‘However,’ Kathy illustrates, ‘surgery is only suitable for certain types of epilepsy, and isn’t possible for some.’
When considering surgery, doctors will undertake tests and be able to determine how effective it will be to an extent; but it isn’t always possible to know the exact outcome, and there is a risk of complications.
As Kathy explains, ‘brain surgery will only be carried out if the benefits outweigh these risks.’
Vagus nerve stimulation
Vagus nerve stimulation (VNS) therapy is another option.
In VNS, a small electrical implant (not dissimilar to a pacemaker) is inserted under the skin of the chest.
The implant communicates electrical signals to the brain via the vagus nerve in the neck.
‘The aim is to reduce the number, duration and severity of seizures with a view to improving someone’s quality of life.’ Kathy explains.
VNS is an option considered when someone is still experiencing seizures despite being on treatment, or if treatment is causing several side effects.
Deep brain stimulation
Deep brain stimulation is another surgical option. ‘This uses electrical signals to stimulate part of the brain to stop seizures.’ Kathy illustrates.
In the procedure, a neurostimulator device is fitted (again, similar to a pacemaker) usually under the skin near the collarbone, the chest or the stomach. A thin lead is also surgically inserted into the brain, and this is connected to the device through a thin extension wire (placed under the skin of the neck and shoulder).
This type of surgery is quite new, and isn’t currently available to everyone. The procedure has shown some early promise when used in epilepsy, but more evidence is needed to fully determine how effective it is.
Lowering the risk of seizures
Besides treatment, taking precautions can help to reduce the risk of seizures in many people with epilepsy, as Kathy illustrates:
‘For those people who have certain triggers ahead of a seizure, there may be ways to manage them. Being aware of, and managing, certain lifestyle factors and health considerations can make a difference to seizures:
- stress (being aware of stress levels and finding ways to reduce anxiety);
- alcohol (excessive drinking can reduce the amount of some epilepsy medicines in the body and make seizures more likely. Alcohol can also increase the side-effects of some epilepsy medicines);
- recreational drugs, including ‘legal highs’ (these can be dangerous and can trigger seizures);
- tiredness (it’s important to keep a steady sleeping pattern);
- irregular meal times (maintaining a balanced diet and keeping up energy levels);
- hormones (key times during a woman’s menstrual cycle can affect certain types of epilepsy);
- flashing or flickering lights (if someone has photosensitive epilepsy);
- or managing illnesses which cause a high temperature.’
There is also some evidence to suggest that the ketogenic diet can help to reduce the risk of seizures in children. This type of diet involves limiting the consumption of carbohydrates, thereby convincing the body to burn fat instead of glucose for energy.
It is thought that seizures are fuelled in some part by the brain using glucose for energy. By burning fat for energy instead, this might lower the likelihood of seizures for some.
However, it isn’t a diet which is suitable or effective in all cases, and there is not enough reliable evidence to suggest that it is useful for adults. As such, it isn’t a treatment option currently available on the NHS (although it is listed as a consideration in NICE guidelines for difficult to control instances).
Before embarking on this diet or getting your child to follow it, you should discuss the benefits and risks with a specialist.
As we’ve discussed, living with epilepsy can present several challenges, but there is support available; and not just from your doctor or specialist.
‘Epilepsy Action offers a wealth of advice and support services for people with epilepsy.’ Kathy explains. ‘The website has up-to-date information on everything from diagnosis to first aid, benefits to driving.’
‘Epilepsy Action Helpline on freephone 0808 800 5050 has trained advisers offering confidential and personal advice. They are also available by email at firstname.lastname@example.org.’
Speaking to other people affected by the condition can also be helpful, Kathy explains.
‘Online forums and social media can be a great way of sharing experiences and support. (Epilepsy Action is on Twitter and Facebook.) The charity also has a member magazine with news, features and developments in the epilepsy world. You can access local groups, events and fundraisers organised by Epilepsy Action on our site.’