There are over 40 different types of seizures, and they affect people in differently.
The chance of seizure related risks will be higher if seizures are not controlled.
Although most seizures are spontaneous and unpredictable, there may be circumstances that trigger your seizures that you come to recognise. These can include: stress, sleep deprivation, changes in routine, changes in epilepsy medication or forgetting to take medication.
Recognising your seizure triggers will help you to avoid and manage them as much as you can.
Seizures can sometimes lead to injuries or falls; but they can also occasionally be more serious, even contributing to, or causing death. Different types of seizures carry different risks, so your risk depends on the type of seizures you have, and also your activities and lifestyle. For instance, poorly controlled tonic clonic seizures pose the highest safety risk, and if you go mountain climbing, this risk is elevated.
Life will never be risk-free, but taking positive action to reduce your seizures, thinking about risks specific to you and discussing with your doctor are a start to reducing some of your seizure related risks.
I’m seizure free – what do I need to know?
If you’re currently seizure free your risks may be lower, but if you are still taking antiseizure medication it is really important you continue to take it as prescribed unless your doctor suggests any changes.
You should also have regular reviews to check:
- there are no changes to your epilepsy or seizures
- that your medication is still right for you
- whether you still need to be taking seizure medication.
If you are seizure free but notice changes to your health, speak with your doctor in case it is related to your epilepsy or your medication.
I’m not seizure free – what do I need to know?
Anyone having seizures, whether one or two a year or several a week, is considered to have ‘active epilepsy’. If this is you, make sure you have regular reviews with your treating doctor. Later on we discuss ways to reduce your risk.
If you are unsure what type of epilepsy or seizures you have, ask your doctor to explain at your next appointment. You should also discuss how you could lessen your risks for your specific type of seizure.
During your visit, your doctor will need to know all about your seizures. To help with this you may want to:
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- Ask people who have seen your seizures to describe them
- Keep a record or diary of your seizures and the circumstances surrounding them
- Take someone who has seen your seizures to a medical appointment.
Whether you have active seizures – or are seizure free (and still taking medication), it is important that you take your medication as prescribed.
Not taking your medication, even for a short time can increase your risk of seizures and injury, or in some cases can contribute to seizure related death. If you are having medication side-effects, or are worried about other effects of your medication, discuss this with your doctor.
Risks
Having active epilepsy puts you at risk, and there are certain types of seizures which may increase a person’s risk level further. These are:
Tonic-clonic seizures
- The risk of seizure related death or injury is highest in people who have tonic clonic seizures.
- These seizures are what most people picture when they think of a seizure
- It is when a person loses consciousness, becomes stiff and then the muscles begin to jerk rhythmically
- They usually last less than 2 minutes. However, should the seizure last longer, the person may need additional emergency care
- When there is a risk of prolonged seizures, a seizure management plan or seizure emergency plan (with emergency medication) is usually in place
There are positive actions you can take to reduce your risks if you have this type of seizure. Read more here.
Nocturnal seizures
- Nocturnal seizures are seizures that happen during sleep. They are a risk factor for seizure related death.
- People with nocturnal seizures may not know they are having seizures unless they are witnessed, or if they have been detected on a monitoring device
- If you have epilepsy and you notice anything unusual in the morning such as bruises, a sore tongue, wet bed, tiredness, headache or stiffness, take note and speak to your doctor about this.
- Some people with nocturnal seizures may also have seizures during a daytime sleep or nap.
Read more about nocturnal seizures here.
There are positive actions you can take to reduce your risks if you have this type of seizure. Read more here.
Cluster seizures, prolonged seizures and status epilepticus
Most seizures stop on their own and don’t create a lot of concern, but occasionally seizures don’t stop and can become life-threatening. This can be called seizure clusters, prolonged seizures or status epilepticus and is considered a medical emergency. See Seizure Emergencies
- Cluster seizures are where seizures happen one after the other without recovery in between, and can lead to status epilepticus
- Status epilepticus is when the seizure doesn’t stop and there is continuous seizure activity for more than 5 minutes
- This type of seizure can have serious consequences, even death, so early intervention (such as emergency medication) after 5 minutes of tonic-clonic seizure activity is often prescribed
These situations are considered seizure emergencies and early treatment is vital to stop the seizures.
Often in these situations, emergency medication is prescribed to give outside the hospital setting.
If you have these types of seizures, having a seizure management plan (SMP) in place will help ensure quick and appropriate seizure management is taken.
SMP’s may include:
1. The use of emergency medications to prevent status epilepticus developing
2. Advising others what to do when you have a seizure, and when to call emergency services
3. What to do if any contingencies may arise
It is recommend that people with epilepsy have annual reviews with their specialist, and that they are given information about risk. See here for (UK) SIGN guidelines and NICE Guidelines
