There are over 40 different types of seizures, and they affect people in different ways. Most seizures end on their own and don’t create a lot of concern. The chance of seizure related risks are higher when people have poorly controlled seizures. Getting an accurate seizure diagnosis can mean the most appropriate management approach will be taken.
Find out more about seizure classifications here.
Although seizures are spontaneous and unpredictable, there may be triggers that you come to recognise such as: stress, sleep deprivation, changes in routine or forgetting to take epilepsy medication (also known as antiepileptic drugs or AEDs). Recognising your triggers will help you to avoid them as much as possible.
Seizures can sometimes lead to injuries or falls; but they can occasionally be more serious, even contributing to, or causing death. Different types of seizures carry different risks, so your risk firstly depends on the type of seizures you have, then what your lifestyle is. 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 prescribed epilepsy medication it is really important you continue to take it until your doctor suggests any changes. You should also still have regular reviews, to check:
- there are no changes to your epilepsy
- that your medication is still right for you
- whether you still need to be on epilepsy medication.
If you are seizure free but you notice any 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 a year or many a day, is considered to have ‘active seizures’. Regular epilepsy reviews with your doctor are recommended.
If you have epilepsy and are unsure what type of epilepsy or seizures you have, ask your doctor to explain them at your next appointment. You should also discuss how you could minimise your risks for your specific type of seizure.
Clinical guidelines (information for doctors about how to diagnoses, treat and manage health conditions) such as SIGN (Scotland) and the NICE Guidelines (UK) recommend that people with epilepsy have regular reviews of their epilepsy yearly, and that they are given information about risk.
During your review, your doctor will need to know all about your seizures. To help with this you may want to:
- ask people who observe your seizures to describe them
- keep a record or diary of your seizures and the circumstances surrounding them
- invite someone who has seen your seizures to a medical appointment.
Whether you have active seizures – or are seizure free (but still prescribed medication), it is important that you take your medication regularly, reliably and as prescribed, even if you are worried about doing so. Not taking your medication, even for a short time can cause more seizures and increase your risk of injury, or in some cases can cause people with epilepsy to die. If you are having side-effects, or are worried about this, speak with your doctor for advice on the best treatment for you.
Having active seizures puts you at risk, and there are certain types of seizure which research has shown increase a person’s risk level further:
- These seizures are what most people picture when they think of a seizure
- It is when a person loses consciousness, becomes stiff (often falling to the ground) and then the muscles begin to jerk rhythmically.
- These seizures often last less than 2 minutes. 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 prepared.
- The risk of seizure related death or injury is highest in people with frequent tonic clonic seizures.
There are positive actions you can take to reduce your risks if you have this type of seizure. Read more here.
- 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 may have seizures during a daytime sleep or nap.
Cluster Seizures and Status Epilepticus
Occasionally, some people with epilepsy can have very long seizures – called ‘prolonged’ seizures. This can happen with any seizure type, but prolonged tonic clonic seizures are considered a medical emergency and require urgent treatment.
These seizures may be called:
- Cluster seizures – where seizures occur one after the other without recovery in between
- Status epilepticus – continuous seizure activity for 30 minutes or longer. This type of seizure can have serious consequences, even death, so guidelines recommend early intervention (such as rescue or emergency medication) after 5 minutes of tonic-clonic seizure activity
Guidelines (NICE, UK) recommend that emergency medication is started 5 minutes after a person first goes into a prolonged convulsive seizure or if they have 3 or more convulsive seizures in an hour.
Early treatment can stop a long run of seizures. If you have these types of seizures, having a seizure management plan in place will help ensure quick and appropriate seizure management is taken. SMP’s may include:
- the use of rescue or emergency medications to prevent prolonged seizures developing
- advising others how to help when you have a seizure, and when to call emergency services