An action plan for your seizure clusters helps you and the people around you know what to do during and after your seizures.
It's a document that pulls all your health information together in one place. You can give copies to people at work, school, your doctors’ office, sports clubs, or any social clubs you’re in.
How to Make a Seizure Cluster Action Plan
To get started, you can use a seizure action plan template you get from your doctor or find online. Or create your own format. Just ask your doctor to check out the form to make sure it's current and complete.
Work with your family members, caregivers, or others close to you to fill it out. Your plan should tell people:
- What your seizures look like, including signs that one is about to start
- What may trigger them
- How you want to be helped during a seizure
- What steps to take to keep you safe
- Whether your doctor has prescribed rescue medicines, and where to find information about them
- Emergency steps people should take
Make sure your doctor approves and signs your action plan.
If you have a child who has cluster seizures, create a seizure action plan for their school or day care caregiver. Your child's doctor can provide a form with information appropriate for a classroom environment.
Update the plan once every year, or anytime there are changes related to your seizures, medication, or general health. Your doctor should sign off on any changes.
Other Documents You Need
Along with your seizure action plan, it's a good idea to create supporting documents to help you manage your epilepsy and help those around you understand your situation. Include:
- An emergency medication plan. This is essential if you're prescribed rescue medication to stop your seizures. Include what medication you take, how it's taken, the dosage, instructions for giving it to you, and whether only a trained person should administer it.
- How to reach your health care/medical team. Contact information for your doctor and caregivers lets people know who to call during your seizures.
- General medication information. Documenting all your medication helps you and your caregivers keep track of your schedule. Include the name of the drug or drugs you take, what it's for, the dosage, when you're supposed to take it, and the total daily dose. Also list any drug allergies you may have, along with contact information for your pharmacy.
- A seizure log or calendar. This helps you track how often you have seizures. Write down how many seizures you have, what type they are, triggers, and, if applicable, the dates of your menstrual cycle (hormonal changes can affect seizures). This document can also help you figure out how your seizures might relate to other conditions you may have.
- A seizure event diary. In this document, a caregiver records what happens during your seizures. This is especially helpful if you have more than one type of seizure. Ask the caregiver to write down everything that happens during these events.
- How to record a seizure. This tells your caregivers how to take notes about your seizures. They should document your behavior before the seizure (there may be some warning signs), the time and day the seizures happened, any possible triggers, exactly what happened during the seizure, which parts of your body were involved, how long it lasted, and what happened afterward.
- Your health to-do list. This is a personal reminder list that helps you keep track of your doctor's instructions. Write down the date of each entry and what you need to do or whom you should ask about it. Check off each item as you complete it.
- Questions for your health care team. Keeping a list of questions for your doctors will help you stay on top of your health and keep your seizure action plan up to date. Include the date of your question, who to ask, and what to do after you get an answer.
If there’s something you don’t know, take your forms to your next doctor's appointment and ask them for help.
When to Call 911
You probably won't need emergency medical help during a seizure. But some situations can be more dangerous than others. Someone should call 911 if:
- You don't wake up after a seizure or have a hard time breathing.
- Seizures happen closer together than is usual for you.
- A seizure lasts more than 5 minutes.
- You're hurt during a seizure.
- A seizure happens in water.
- You have another condition like heart disease, diabetes, or pregnancy.