Have you ever had several seizures in a short space of time? This could suggest that you have experienced cluster seizures.
However, it's important to be aware that seizure clusters are well recognized clinically, but a consensus definition has not been established (we'll explain further below).
Many people with epilepsy appear to experience seizure clusters (they’re are also known as acute repetitive seizures). In one study that analysed the seizure diaries of 87 people with epilepsy, almost half of the participants experienced them at some point (according to one definition of what counts as a cluster).
Seizure clusters can have negative consequences, so it is important to take them seriously. If you believe you have experienced a cluster, speak to your doctor about it as soon as possible.
What are cluster seizures?
There is no official definition of what a seizure cluster is. It may be helpful to discuss this term with your doctor, to make sure you have a shared understanding of what you both mean by this term.
Generally, experts define them by how many seizures (or sometimes, the type of seizure) a person has in a specific time frame. But different experts consider different numbers of seizures to be a cluster:
- Some identify seizure clusters as more than 3 focal impaired consciousness seizures in 24 hours
- Others define clusters as more than 3 focal or generalized seizures in 24 hours (excluding absence and myoclonic seizures)
- But some count more than 2 seizures of any type in 24 hours as a cluster
- Some define clusters as more than 2 seizures in 6 hours
- Others define them as more than 3 focal impaired consciousness seizures in 4 hours
- A period of time when an individual experiences more seizures than normal
Because there isn’t a widely-accepted definition of what a seizure cluster is, you might feel unsure whether or not you have had one. Talk with your doctor about what has happened - they may be able to provide some clarity.
Who may be more likely to experience cluster seizures?
Many people with epilepsy could potentially experience cluster seizures at some point. But some people are more likely to experience them, including:
- People with drug-resistant epilepsy
- People with poorly controlled epilepsy
- People with severe epilepsy
- People with frontal lobe epilepsy
- People with mesial temporal sclerosis
- People with multifocal epilepsy
- Those with symptomatic generalized epilepsy
- Those with a history or central nervous system infection
- Those with focal cortical dysplasia
- People who’ve previously had seizure clusters
- People who’ve previously had status epilepticus
- Those who’ve suffered head trauma
- People whose epilepsy started at a younger age
- People who had many seizures (once a week or more) during their first year after epilepsy diagnosis
How are cluster seizures treated?
There are several kinds of seizure cluster treatments. Some can be administered (given to you) at home, others need to be given at a hospital.
Seizure cluster treatments can be given in a few different ways.
- Nasal sprays. In the last couple of years, nasal sprays have been approved by the Food and Drug Administration to tackle seizure clusters.
- Rectal suppositories. One way to give a seizure cluster medicine is by using rectal suppositories, which are put in your behind.
- Injections. Cluster seizure medications can be injected. This is usually only a possibility at a hospital.
- Pills you swallow. There are also some rescue medications you can swallow for seizure clusters.
Are seizure clusters dangerous?
Seizure clusters can be dangerous. When left untreated, they are associated with an increased risk of status epilepticus, a serious neurological emergency characterized by prolonged or recurrent seizures.
Sudden Unexpected Death in Epilepsy (SUDEP) is also a higher risk in people who have had cluster seizures. Speak with your doctor if you believe you've had cluster seizures.
Creating a seizure action plan for cluster seizures
Having a seizure cluster action plan may be helpful. It can help you and those around you recognize when a seizure cluster is occurring and understand how to respond, including when and how to use rescue medication. By working with your doctor to create an action plan, you and your loved ones can be better prepared to manage seizure clusters if they occur.
