New to epilepsy treatment

Should I start treatment?  

Your specialist may recommend that you start treatment but the choice is ultimately yours and will depend on your situation. To help you make a decision the following things may be useful.

• Understanding your condition and how it affects you.
• Understanding what treatment is being suggested and why.
• Understanding how this treatment might affect your life as well as your epilepsy.
• Having enough information to decide what you want to do and being able to discuss this with your specialist.
• Having an agreed treatment plan and being able to follow it.

To help you decide about taking medication, for you or your child, it can be important to be aware of, and think through, the benefits and risks of taking, or not taking anti-seizure medication (ASM). This may depend on how your seizures affect you and how often they happen.

If you need more information to help you to make a decision, you can talk to your specialist, Epilepsy Specialist Nurse (ESN), or GP. You can also talk it through with our epilepsy helpline.

How serious can the risks be? 

For most people with epilepsy, seizures last for a short time and stop on their own. Although there is a risk of accident and injury, seizures themselves do not usually cause any lasting harm. However, for some people their seizures can cause serious harm.

Status epilepticus

Status epilepticus (or ‘status’) is where a seizure continues without stopping, or a series of seizures happen without the person recovering in between, for five minutes or more. This can happen with any seizure type. When status happens in a tonic clonic seizure, this is life threatening and needs urgent treatment. 

Status can affect the person’s oxygen levels and blood pressure, their heart, and lungs. This can cause permanent brain damage and can be fatal. So it is important to seek medical help if a seizure is prolonged or repeated. 

The two emergency medications used to prevent status in the community (not in hospital) are midazolam and diazepam. 

It is important that everyone who is prescribed emergency medication has a current written plan (or protocol) for being given it. Specialist training is needed to give emergency medication. Epilepsy Society can provide this training. 

Seizures that last longer than usual, or an increased number of seizures, often happen before status. For some people, missing doses of ASM can cause status.

SUDEP

On rare occasions people die suddenly for no clear reason. When this happens to someone with epilepsy it may be called sudden unexpected death in epilepsy (SUDEP). SUDEP is when a person with epilepsy dies and no other cause of death can be found. 

SUDEP usually happens when the person is asleep and so it can be hard to know why it has happened, but it is thought to be related to having a seizure and the person stops breathing and their heart stops. 

The number of people who die from SUDEP is relatively low (around 600 per year in the UK) and an individual’s level of risk will depend on how their epilepsy affects them. 

As SUDEP is thought to be related to having seizures, a key way to reduce the risk is to try to get the best seizure control possible. This is usually through taking ASM. If you are worried about status or SUDEP, you can talk to your specialist or you could call our confidential helpline.

Epilepsy Society is grateful to Dr F J Rugg-Gunn, Consultant Neurologist & Honorary Associate Professor Clinical Lead, Chalfont Centre for Epilepsy, who reviewed this information.

Information updated: July 2024