Seizure Clusters 101

Seeking Help for Seizure Clusters

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How can I get help for seizure clusters?

Many general physicians, internists, and neurologists help treat epilepsy. You may be able to get a referral from one of these doctors to see a specialist called an epileptologist. An epileptologist has special training in seizures and epilepsy surgery. Epileptologists work at hospitals, group or private practices, or academic teaching hospitals.

Epileptologists also work at specialized Level 3 or 4 epilepsy centers.

Level 3 centers offer many basic services to people with hard-to-treat epilepsy
Level 4 centers have even more advanced services, including surgical treatments for appropriate patients

Level 3 and 4 centers can offer help to people with seizure clusters. Find an epilepsy center near you.

What kind of information about my seizures should I share with my healthcare professional?

You and your healthcare professional can work together to determine whether you are experiencing seizure clusters. Helpful information includes:

  • Date and time of the seizure(s)
  • Start and end time of each seizure
  • Start and end time of the entire episode
  • Triggers that may have caused the seizure
  • Auras, sensations, or warning signs
  • Number of seizures that occurred
  • Whether there was a period of recovery between seizures
  • If rescue medicine was used, and the results

Are seizure clusters an emergency?

Seizure clusters should be taken very seriously. Seizure clusters that are not treated and controlled may become more severe and lead to other health problems such as status epilepticus or brain injury. Status epilepticus is also a medical emergency that can be life-threatening if not treated.

Unlike seizure clusters, status epilepticus is a prolonged seizure with no recovery period. A person with status epilepticus may have a nonstop seizure for 30 minutes or more.

How a seizure care plan can help

Some people who live with seizure clusters say that having a care plan helps them feel more prepared and in control. A seizure care plan lets family, friends, coworkers, and others in the person’s life know what to do when seizure clusters occur.

A seizure care plan is the plan put in place for “what to do” and “who to call” when seizure clusters happen. This helps the people in a person’s life to be prepared to help if seizure clusters occur. Information that should be shared includes:

  • Name of the person with the seizure disorder
  • Notification that this person is being treated for a seizure disorder
  • How to recognize a seizure emergency and how to respond
  • Names and numbers of emergency contacts such as caregiver(s) and treating physician(s) should a seizure emergency happen
  • Basic seizure first-aid instructions
  • Instructions on how to record seizure details such as time, date, number of seizures, length of seizure episode, description of the seizure(s), and how the person responded
  • What medicines the person usually takes to manage seizures, and emergency medicine given, if any

The Epilepsy Foundation offers a template of a seizure care plan.