Tracking Individual and Cluster Seizures

As fall approaches, it’s always a good time to take another look. As an organization, the Epilepsy Foundation continues to invest in resources and tools for families living with epilepsy, especially My Seizure Diary – our online seizure self-management resource. One of the key features enhanced in this diary is the ability to track individual and cluster seizures.

Tracking Individual Seizures and Cluster Seizures

The ability to track more than one seizure in a day is critical. When seizures occur one at a time with space in between, they can be counted okay. But some people can have many a day or over a period of time. Or they may happen close together so it’s hard to sort out seizure behavior from after effects of a seizure. When this happens, what do you do? Should you guess at how many seizures happened? Do you write unknown? Or can you call it a cluster?

What’s an individual seizure?

These are seizures that occur singly or alone. They have a beginning and end and you can easily count them.

What is a cluster seizure?

Cluster seizures may also be known as seizure clusters, acute repetitive seizures, or "bouts" of seizures. A recent review of how people with epilepsy and families discussed cluster seizures in our forums showed that no common language existed for these seizures. Many people just called them periods of increased seizures. This lack of common language makes it hard to track clusters, talk with your health care team, and know what each other is saying. A tool that uses a consistent language will make it easier to share data and make informed decisions.

In My Seizure Diary, we define cluster seizures as:

a. Seizures happening often enough during a period of time that they are too frequent to count reliably.

and/or

b. A group of seizures that are different than your typical ones and occur in a specific pattern, number, or over a particular period of time. This is typically minutes or hours, but some people may have a cluster of seizures over a few days, for example, women who have seizures before their menstrual cycle or mid-cycle.

Why is it important to track seizure clusters separately from individual seizures?

When seizures occur in specific patterns, there could be reasons.

• Some epilepsy syndromes (or types of epilepsy) typically have clusters, so knowing this can help diagnose the type of epilepsy you have.
• Triggers to clusters can be identified. Triggers are things (activities, situations, or health states) that may make a person more likely to have seizures. Some seizures occur more often during sleep or shortly upon awakening. Other seizures may happen when a person isn’t getting enough sleep or good quality of sleep so they are sleep deprived. Other triggers can include stress, sick with another illness, or alcohol or drug use.
• Some people may have ways to intervene and treat cluster seizures (called rescue therapies). These can stop clusters and prevent seizure emergencies.
• By tracking individual and cluster seizures separately, you can see what effect treatment is having. Is a rescue therapy helping? Are changes in daily treatments needed?

Help for Clusters and Individual Seizures

• Visit My Seizure Diary Help Module
• Use paper seizure calendars from our Toolbox
• Learn more about seizure clusters
• Learn seizure first aid and ways to respond to clusters and seizures

We hope this helps you track seizures more confidently and accurately. Make sure you share this information with your loved ones as well as your health care team. The information will help you tailor your seizure first aid plans too!

Best wishes,

Patty Osborne Shafer RN, MN
Associate Editor, epilepsy.com