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Epilepsy

Epilepsy is a common health condition that affects the brain and triggers seizures. It’s usually a lifelong condition, but may improve over time. 

  1. Can start at any age.
  2. Treatment aims to reduce seizure.
  3. Seizures can often be managed. 

If you have any concerns about epilepsy or its symptoms, our GMC-registered clinicians can offer advice, referral to specialists and prescriptions where suitable via our online video consultation service. They are available for consultation from 9am to 5pm, Monday to Friday.

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Description

Epilepsy is triggered by disruption to electrical signals in the brain, and intense surges of electrical activity, resulting in seizures. In the majority of instances, it’s unclear as to why this occurs, but genetics may play a role in how the brain functions; around 1 in 3 people with the condition have a family member who also has epilepsy. 

You should dial 999 for an ambulance in the following circumstances: if someone is having a seizure for the first time; has a seizure that lasts for longer than 5 minutes; has multiple consecutive seizures; is experiencing breathing difficulties or has injured themselves severely.

Although infrequent, there are cases where the condition has been caused by damage to the brain, as a result of a stroke, a brain tumour, a severe head injury, drug or alcohol abuse, an infection to the brain or oxygen deficiency during birth, to name some examples. 

The major symptom of epilepsy is repeated seizures, which are sudden surges of electrical activity in the brain that impact on how it functions. Seizures may manifest in different ways from one person to the next, according to the part of the brain that is affected.

Some seizures may cause the body to shake and jerk (a ‘fit’) or in other cases result in problems such as a loss of awareness or experiencing strange sensations. They typically pass within a few seconds or minutes. 

Seizures can take place when you’re asleep or awake, and may stem from feeling extremely tired.

In terms of types of seizures, simple partial (focal) seizures or ‘auras’ can cause a general feeling of uncertainty, a ‘rising’ sensation in the stomach (similar to being on a fairground ride), a sense of deja vu (a feeling that what you are experiencing currently has happened before), strange smells or tastes, tingling in the arms and legs, a heightened sense of fear or joy and stiffness ot twitching in part of your body, such as an arm or hand. 

Simple partial seizures are sometimes referred to as ‘warnings’ or ‘auras’, as they can indicate that another form of seizure is about to occur. 

Complex partial (focal) seizures, in some contrast to simple partial seizures, result in a loss of awareness and can cause random body movements, including smacking your lips, rubbing your hands, making random sounds, moving your arms around, picking at clothes or fiddling with objects and chewing or swallowing. 

You won’t be responsive to other people during these seizures and you won’t have any recollection of them. 

You may also experience a tonic-clonic seizure, or a ‘grand mal’. Tonic-clonic seizures are widely recognised as typical epileptic fits. There are two stages to these seizures: the first is the tonic stage, where you lose consciousness, your body stiffens up, and you may fall to the floor. The second is the clonic stage, in which your limbs become jerky, you may lose control of your bladder or bowel, you may bite your tongue or the inside of your cheek, and you can experience breathing difficulties. 

Tonic-clonic seizures tend to stop after a few minutes, but some do persist for longer. You may have a headache and struggle to remember what happened following the seizure. 

If you experience a loss of awareness of your surroundings for a short period of time, this is known as an absence seizure, and symptoms include staring into space, appearing as if you’re ‘daydreaming’, fluttering your eyes and jerky movements. Myoclonic seizures, in which some or all of your body twitches, usually occur soon after waking up, while atonic seizures, which are very brief, result in all your muscles relaxing suddenly, which may cause you to fall over. 

Seizures that last for longer periods, or where someone does not regain consciousness between a number of seizures, are known as status epilepticus, and constitute a medical emergency. They should be treated as soon as possible. 

Page last reviewed:  22/05/2020
Types of Treatment

When should I see a doctor?

You should make an appointment with a doctor if you think you may have experienced a seizure for the first time. A seizure can have several causes and does not necessarily mean that you have epilepsy, but you should see a doctor to try and identify what may have triggered the seizure. 

How is epilepsy diagnosed?

Seizures are the only clear indication that someone has epilepsy, and this can make diagnosing the condition difficult. A diagnosis is typically established when someone has had two or more seizures that were triggered in the brain. There isn’t a test as such for epilepsy, and NICE guidelines advise that anyone who potentially has the condition should be referred to a specialist within two weeks. 

A diagnosis is determined by assessing what you experienced before, during and after your seizures. It’s important to distinguish between certain types of faints, which can resemble epileptic seizures, and epileptic seizures themselves. The difference is that faints often consist of advance warning signs, such as feeling cold, clammy and experiencing blurred vision, whereas epileptic seizures happen suddenly and there may be nothing to suggest that they’re going to occur. 

It can be helpful to have a record of your experience of your seizure to share with your clinician or with a specialist. If you have no recollection of your seizure yourself, any person that witnessed your seizure may be able to help you to answer some of the following questions:

Before the seizure:

  • Did anything trigger the seizure? For instance, did you feel tired, hungry or unwell?
  • Did you experience any warning signs that a seizure was about to take place? 
  • Was your mood affected in any way? For example, were you excited, anxious or quiet?
  • Did you let out any sound, such as crying out or any mumbling?
  • Did you experience any unusual sensations, such as a strange taste or smell, or a rising sensation in your stomach?
  • Where were you and what were you doing prior to the seizure?

During the seizure:

  • Did you appear ‘blank’ or stare into space at all?
  • Did you experience a loss of consciousness or become confused?
  • Did you do anything unusual, such as mumble, wander around or fiddle with your clothing?
  • Did you experience a change in colour (become pale or flushed) and if so, where (face or lips)?
  • Was there a change in your breathing? For instance, did it become noisy or did it appear to become more difficult?
  • Did you experience any jerks, twists or movement of body parts?
  • Did you fall down, or become stiff or floppy?
  • Did you wet yourself?
  • Did you bite your tongue or cheek?

After the seizure:

  • How did you feel? Did you feel tired, exhausted or need to sleep?
  • How long was it before you were able to return to day-to-day activities?
  • Was there anything else that you noticed?

A clinician or specialist may also take your previous medical history into account, and any other medical conditions, to help them make a diagnosis. In light of a head injury, for example, an infection of the brain (such as meningitis) or a stroke, can cause epilepsy. Certain inherited conditions, such as tuberous sclerosis, may also cause epilepsy, but in the majority of cases it isn’t clear what the triggers are. 

How is epilepsy treated?

Treatment for epilepsy is effective in most instances in reducing the number of seizures that someone has, and can stop someone from having them altogether. 

Anti-epileptic drugs (AEDs) are the major form of treatment for the condition, and work by regulating the electrical activity in the brain that causes seizures. When taken regularly, at around the same time every day, as many as 70% of people may stop having seizures with the right AEDs in place. 

There are numerous AEDs available, including sodium valproate, carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, ethosuximide and topiramate. 

A single AED, at a low dose, is usually issued to begin with, which is then gradually increased until your seizures are under control. If the AED isn’t effective, your clinician or specialist may recommend an alternative, adding the new drug to the existing one before withdrawing the first one in stages. The resolution may be that you take two drugs each day, to manage your seizures. 

The best form of AED for you also depends on your circumstances, including the type of seizures you experience, your age and whether you’re considering having a baby. You should discuss the most suitable AED for you with your clinician or specialist. 

AEDs are available in a number of different forms, such as tablets, capsules, liquids and syrups. You should never stop taking an AED suddenly, as this can result in a seizure. If you haven’t experienced a seizure for a few years, you should discuss stopping treatment with your clinician or specialist first. 

You should refrain from taking any other medicines whilst taking AEDs (including over-the-counter or complementary treatments) unless you have spoken to your clinician or specialist. Other medicines can impact on the effectiveness of AEDs.

Side effects are common with AEDs, and particularly when starting treatment. Some may appear and pass within a few days, whereas others may not develop for a few weeks. The side effects you may experience depend on the medication that you’re taking. 

Common side effects include drowsiness, reduced energy, agitation, headaches, uncontrollable shaking (tremor), hair loss or unwanted hair growth, swollen gums and rashes (you should contact your GP if you get a rash, as it may indicate a serious reaction to the treatment). You should also contact your GP or specialist if you encounter symptoms that resemble being drunk, such as unsteadiness, reduced concentration, and vomiting, as this may reflect that your dose is too high. 

If you find that AEDs don’t control your seizures, or if tests indicate that your seizures are caused by an issue in a small part of your brain that can be removed without resulting in any damage, surgery to remove that part of your brain may be explored as an option. In these circumstances, it’s likely that your seizures could stop entirely following surgery.

In the event that you could be a candidate for surgery, you may be referred to a specialist epilepsy centre to determine if surgery is feasible for you. This typically consists of a number of tests, including brain scans, an electroencephalogram (EEG) to assess the electrical activity of your brain, and memory, learning ability and mental health tests. The results will help you and your specialist to decide if surgery is the best option for you. 

Surgery is usually conducted under general anaesthetic, with a surgeon making a small incision in your scalp and an opening in the skull to remove the affected part of the brain. In most cases, it may take at least a few weeks or months for you to get back to normal after surgery. You may find that your seizures do not stop immediately, so you may have to continue taking AEDs for a year or two. 

The procedure is not without risks, and you may develop complications with your memory, mood and vision. These complications can ease over time, or they may become chronic. You should discuss the risks with your surgeon before having the surgery. 

If AEDs are not managing your seizures and brain surgery isn’t suitable for you, vagus nerve stimulation (VNS) may not stop your seizures altogether, but it can reduce their severity and frequency. 

VNS involves a small electrical device that resembles a pacemaker being placed under the skin of the chest. The device is attached to a wire beneath the skin and connects to a nerve in the neck (the vagus nerve). Electricity is then sent along the wire to the nerve. It’s believed that this helps to regulate seizures by altering the brain’s electrical signals. 

The treatment can result in a hoarse-sounding voice, a sore throat and a cough, but these side effects are typically only present during the time that the nerve is stimulated. 

The battery for the VNS device usually lasts for up to 10 years, at which point you will need to have another procedure to replace it. 

A further treatment option is deep brain stimulation (DBS). It is similar to VNS, but the device inserted into the chest is connected to wires that run to the brain, rather than a nerve in the neck. Electricity transmitted through the wires can help to stop seizures by altering the electrical signals in the brain. 

DBS is a relatively new procedure, however, and isn’t used very frequently, so its effectiveness in treating epilepsy remains unclear. It may also carry some serious risks, such as bleeding on the brain, depression and memory issues. If you are considering DBS treatment, you should speak to your doctor about it. 

It’s believed that a ketogenic diet may reduce seizures amongst children with epilepsy by changing the levels of chemicals in the brain. 

Because a high-fat diet is linked to health conditions such as cardiovascular disease and diabetes, a ketogenic diet isn’t recommended for adults, but under the guidance of an epilepsy specialist and a dietician, it has been shown to have a positive impact on the number of seizures children get. 

It’s a treatment that’s sometimes recommended for children whose seizures aren’t managed using AEDs.

Can epilepsy be prevented?

Developing the condition in the first place can’t be prevented as such, but there are measures that you can put in place to help manage seizures. Identifying an AED that works for you, and taking it every day as advised by your doctor, can reduce the number of seizures you experience, and even stop them completely in some cases. 

Seizures may in some instances be triggered by something specific, such as stress, sleep deficiency or alcohol. Keeping a seizure diary, in which you record when you have seizures and what you were doing at the time, can help you to establish what the trigger or triggers are. Avoiding these triggers where you can in future may help to restrict the number of seizures you experience. 

Regular reviews with your doctor about your epilepsy and the treatment you’re taking can also be helpful in addressing any problems that you may be encountering with your medication, and are a good chance to raise any questions that you have about the condition. You should have a review with your clinician at least once a year, although you may need to have them more frequently if your epilepsy is not well regulated. 

If you struggle to bring your seizures under control, making certain adjustments to your home environment can help you to stay safe, such as putting guards on heaters and radiators to prevent you from falling on to them. Installing smoke alarms to alert you to food burning if you forget what you’re doing sometimes, or if you experience seizures that result in a loss of awareness, may also be helpful.

Sports and leisure activities aren’t usually impacted by epilepsy, but if your seizures aren’t well managed, you may need to refrain from swimming or doing water sports alone, and make sure that you wear a helmet whilst cycling or riding a horse, for example. You may also need to avoid using certain equipment at the gym. Staff at the gym should be able to advise you on this.

Although rare, there are occasions where someone with epilepsy dies during or following a seizure, without it being clear why. This is called sudden unexpected death in epilepsy (SUDEP) but it may sometimes be preventable. To reduce your risk, you should try to ensure that your epilepsy is well managed by taking your medication as prescribed by your doctor, and avoiding triggers for seizures where you can. 

If you’re looking for advice, treatment, referral to specialists or prescriptions where appropriate for epilepsy, our clinicians may be able to help you via our online video consultation service. The service is available between 9am and 5pm, five days a week. 

Page last reviewed:  22/05/2020
Questions and Answers

Is it safe to drive with epilepsy?

If you’ve experienced a seizure, you must stop driving and inform the Driving and Vehicle Licence Authority (DVLA). You may lose your licence until your seizures are brought under control. 

When you are able to reapply for a licence depends on the type of seizure you have experienced. For instance, if you have had seizures that have resulted in a loss of consciousness, you can’t reapply for a licence within 12 months of having the seizure. 

Can I take treatment for epilepsy whilst I’m pregnant?

Epilepsy has no impact on your capacity to have children, and should not prevent you from having a healthy pregnancy. 

However, if you are considering having a baby, you should discuss this with your doctor. Certain AEDs, especially sodium valproate, can cause harm to an unborn baby. If there’s any potential danger to your baby, your doctor may recommend switching to another AED. 

If you discover that you’re pregnant, you should make an appointment with your doctor as soon as you can. Do not interrupt your treatment course without consultation with your clinician. 

Does epilepsy affect contraception?

You should always use a reliable method of contraception if you want to avoid becoming pregnant. 

Certain AEDs can affect how some contraceptives function, including the combined contraceptive pill. 

Methods that are not impacted by AEDs include the intrauterine device (IUD), the intrauterine system (IUS) and the progestogen-only injection. You should discuss the best contraceptive treatments as someone who has epilepsy with your doctor. 

If you require emergency contraception, you should speak to your GP, a pharmacist or a family planning clinic. It may be that you need to have an IUD fitted. 

Is it safe to drink alcohol if I have epilepsy?

Drinking small amounts of alcohol isn’t likely to trigger more seizures. However, drinking moderately or heavily over a short timespan can increase your risks of seizures, and also make the side effects of treatments more likely to occur. 

In some cases, drinking considerably can also result in someone getting less sleep, and forgetting to take their treatment, which may also increase your chances of having a seizure. 

While there are no specific guidelines on alcohol consumption for people with epilepsy, you are advised to follow the NHS guidelines for drinking that apply to everyone (men and women should drink no more than 14 units per week).

If you are unsure about whether the medication you are taking interacts with alcohol, you should always discuss this with your doctor first.

Where can I get advice about epilepsy and buy treatment online?

Our GPhC-registered clinicians can issue advice, referral to specialists and prescriptions where suitable via our online video consultation service. You can make an appointment to speak with them between 9am and 5pm, Monday to Friday. 

Page last reviewed:  22/05/2020

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