What is epilepsy?

Epilepsy is a common condition affecting the brain and causes frequent seizures. A seizure is defined by NICE as “the transient occurrence of signs or symptoms due to abnormal excessive or synchronous neuronal activity in the brain.” They can cause a wide range of symptoms.

This useful video from Epilepsy Action explains what epilepsy is:

How common is epilepsy?

Epilepsy affects 1 in every 100 people. It can start at any age; however, it usually starts either in childhood or in people over 60 years old. It is often a lifelong condition, but can sometimes get slowly better over time.

What are the symptoms?

Symptoms can present differently in different people depending on what part of the brain is affected. Some common symptoms include:

• uncontrollable jerking & shaking - this is known as a "fit"

• losing awareness & staring blankly into space - absence seizure

• becoming stiff - tonic seizure

• strange sensations, such as a "rising" feeling in the tummy, unusual smells or tastes, & a tingling feeling in your arms or legs

• collapsing

Sometimes a person with epilepsy might pass out and not remember what happened.

When should someone seek medical help?

Go to GP:

Someone who thinks they have had a seizure for the first time - this doesn’t necessarily mean they have epilepsy, as a seizure can be caused by several things and sometimes they are a one-off, but it is advised that they should see a doctor to find out why it happened.

Emergency - call 999 (ambulance):

• a person having a seizure for the first time

• has a seizure that lasts more than 5 minutes

• a person is having lots of seizures in a row

• a person that is experiencing breathing problems or has seriously injured themselves

What is status epilepticus?

Status epilepticus is a medical emergency characterised by having a continuous seizure lasting longer than expected (usually around 5 minutes) or more than one seizure within a 5-minute period without returning to normal between episodes. It can lead to permanent brain damage or death.

The aim of treatment is to stop the seizure as soon as possible. After 5 minutes, seizures are unlikely to stop without medical intervention and the longer a seizure lasts, the harder they are to stop.

Immediate management includes securing the airway, giving oxygen, and monitoring cardiac and respiratory function. Underlying causes should be appropriately managed also. Obtaining serum-antiepileptic concentrations in patients who have established epilepsy can determine if non-adherence to their medicines is a cause and may inform treatment doses.

The individualised emergency management plan of patients with epilepsy, if immediately available, should be followed. If no plan is available to there are underlying causes present, patients should be given buccal midazolam (unlicensed) or rectal diazepam in the community. If IV access and resuscitation facilities are immediately available, IV lorazepam should be given.

Where there is no response to the first benzodiazepine dose, emergency services should be called if in the community or expert advice sought if in hospital. The patient’s individualised emergency plan, if immediately available, should continue to be followed; otherwise, a second benzodiazepine dose should be given if the seizure hasn’t stopped within 5-10 minutes of the first dose.

If there’s no response to two benzodiazepine doses, levetiracetam (unlicensed), phenytoin, or sodium valproate may be given as 2nd line treatment. Note that levetiracetam may be quicker to give and has fewer side-effects. If there’s no response, an alternative 2nd line treatment option should be considered with expert advice. If these options aren’t effective or suitable, phenobarbital may also be considered.

If 2nd line treatment options are unsuccessful, general anaesthesia is considered as 3rd line treatment under expert advice.

If there is concern that convulsive status epilepticus may recur, an emergency management plan should be agreed with the patient if they do not have one already.

What treatments are used in epilepsy?

Treatment can help people with epilepsy to have fewer seizures or it may stop seizures altogether. Treatment includes:

• medicines called anti-epileptic drugs – these are the main treatment

• surgery to remove a small part of the brain that's causing the seizures

• a procedure to put a small electrical device inside the body that can help control seizures

• a special diet (ketogenic diet) that can help control seizures

Some people need treatment for life. However, if seizures improve over time treatment might be able to be stopped (done gradually under medical supervision).

Anti-epileptic medicines

Some common anti-epileptic drugs include:

Sodium valproate (Epilim)

Carbamazepine (Tegretol)

Lamotrigine (Lamictal)

Levetiracetam (Keppra)

Topiramate (Topamax)

Anti-epileptic drugs interact with nerve cells in the brain to reduce their activity. Different medicines work using different mechanisms to prevent seizures, by either decreasing nerve cell excitation or increasing nerve cell inhibition.

Lifestyle advice for an epileptic patient

• Take anti-epileptic medicine - If you’ve been prescribed an anti-epileptic medicine, take this as prescribed as these can be very effective at stopping/reducing the frequency of epileptic seizures. Inform patients to tell their doctor about unpleasant side-effects as it is important they do not skip doses or stop taking it without seeking medical advice. It may involve trying several different medicines to find one that works for an individual without causing unpleasant side-effects.

• Triggers - seizures can sometimes have a trigger (some common triggers include stress, sleep deprivation and alcohol). Patients can be advised to keep a seizure diary to figure out if they have any triggers, the patient can then attempt to avoid these.

• Regular reviews - people diagnosed with epilepsy will have regular reviews of their epilepsy condition and treatment usually carried out by a GP or sometimes by an epilepsy specialist. Reviews should be at least once a year, but may need to be more often in cases where epilepsy is poorly controlled.

• Staying safe at home - guards on heaters and radiators stop you falling directly on them, smoke detectors if food is burning if seizures cause you to lose awareness or forget, cover any furniture edges or corners that are sharp or stick out, have a shower instead of bath, don’t lock the bathroom door, put saucepans on the back burners with handles turned away from the edge.

• Sports & leisure - if epilepsy is poorly controlled, patients may need to avoid swimming or water sports alone, wear helmets when horse riding or cycling or avoid certain gym equipment (ask staff).

• Driving - if you’ve had a seizure, you must stop driving and inform the DVLA. You’re driving license may be taken away until seizures are controlled. If a seizure has caused you to lose consciousness, you won’t be able to reapply until you haven’t had a seizure for at least a year.

Pregnancy & Contraception

Epilepsy doesn’t affect a person’s ability to have children. Although, if a person is thinking of trying for a baby it is important that they discuss this with their doctors as some anti-epileptic drugs are teratogenic (can harm an unborn baby). A doctor may suggest switching anti-epileptic medicines if there’s any risk to a baby. If a person suddenly finds out that they’re pregnant they should contact their doctor for advice as soon as possible and shouldn’t stop taking their medicine without speaking to them first.

Men who take sodium valproate or valproic acid should speak to a doctor about their treatment options if they’re considering starting a family or if their partner could get pregnant. This is because there is a small risk that their child could develop learning or behavioural problems if their partner becomes pregnant while they are taking these medicines. They also shouldn’t stop taking their medicine without speaking to a doctor first.

It is important that patients are advised on using reliable forms of contraception. Some anti-epileptic medicines can affect how certain contraceptive methods work, including the combined contraceptive pill. Methods not affected by anti-epileptic medicines include the IUD, IUS and contraceptive injection. It is also a good idea to use a condom as a barrier method as well. A patient may be advised to have an IUD fitted as emergency contraception. Men should use effective contraception while taking and for 3 months after taking sodium valproate or valproic acid.

Sudden unexpected death in epilepsy (SUDEP)

SUDEP is when a person with epilepsy dies during or after a seizure for no obvious reason. It is rare but can sometimes be preventable. The main thing to do to decrease the risk is ensuring your epilepsy is well controlled. The following charity helps to stop preventable deaths due to epilepsy: SUDEP Action.

The PillBox