Have you ever had more seizures than normal in a short space of time? This could mean you’ve had cluster seizures.
Seizure clusters are common among people with epilepsy, with as many as half of people experiencing them at some point.
Seizure clusters can be dangerous, so it is important to take it seriously. If 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.
Some experts define them by how many seizures a person has in a specific time frame. For example, they may say you've had a seizure cluster if you had more than three seizures in 24 hours.
Other experts define seizure clusters in relation to the number of seizures you normally have. If you usually have one seizure per month, but then you experience eight seizures over the course of one month, they would argue this is a seizure cluster.
Whatever definition you use, a seizure cluster is essentially when you have a higher number of seizures than normal.
It’s really helpful to record your seizure clusters in a seizure diary. That way you and your doctor can notice patterns in your seizures, including if there is a sudden increase. You can do this using our free app, Epsy.
Why do seizure clusters happen?
It is often unclear why cluster seizures start happening. But some of the most common causes include:
- Forgetting to take your epilepsy medicine
- Stress
- Tiredness and lack of sleep
- Consuming alcohol or recreational drugs
- Having your period (if you have catamenial epilepsy)
Suggested: How to deal with a breakthrough seizure
Who gets cluster seizures?
Many people with epilepsy could potentially have cluster seizures at some point. But some people are more likely to experience them, including:
- People with refractory epilepsy, which is when seizures are hard to control with medication.
- Women with catamenial seizures, which is when you have clusters of seizures around your periods.
- People whose seizures begin on one side of the brain, known as focal onset seizures, and particularly people with frontal lobe epilepsy. But people with generalized seizures can also get seizure clusters.
- People who have had a head injury.
- People whose seizures started earlier in life.
How are cluster seizures treated?
Seizure clusters are usually treated using ‘rescue medication’ called benzodiazepines. This is a kind of medication that has a calming effect on the brain.
There are several kinds of seizure cluster treatments. Some can be administered (given to you) at home, others need to be given at hospital. Depending on the kinds of seizures and your specific situation, you may also be able to administer them to yourself.
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 of the most common ways to give a seizure cluster medicine is by using rectal suppositories, which are put in your behind.
- Placed on the inner cheek. A special strip is placed on the inside of the cheek where the medication can quickly enter your bloodstream.
- Injections. Cluster seizure medications can be injected. This is usually only a possibility at hospital.
- Pills you swallow. There are also some rescue medications you can swallow for seizure clusters. They have a slower effect than other methods since it takes longer for them to enter your bloodstream.
It’s also really helpful to have rescue medication at home if possible. Studies have found that many people who have seizure clusters still don't have access to rescue medication, meaning they have to go to the emergency room to get treated.
Are seizure clusters dangerous?
Seizure clusters can be dangerous. If they are not brought under control, there is a risk that the person having them may develop status epilepticus. This is when they have long lasting seizures which are much harder to bring under control.
Sudden Unexpected Death in Epilepsy (SUDEP) is more common in people who have had cluster seizures. This is why it's very important to speak with your doctor if you believe you've had cluster seizures.
Creating an action plan for cluster seizures
Having an action plan for when you have seizure clusters is very helpful. Not only will it mean that you and the people around you recognize you're having a seizure cluster, it also means you'll know what to do if it happens, and how to use rescue medication. That will give you a greater sense of control and confidence when dealing with the situation.
By creating an action plan for seizure clusters with your doctor, you and your loved ones can be prepared for when cluster seizures happen.
