A seizure action plan is an important tool in the effort to manage your epilepsy. It may also be called a seizure response plan or epilepsy management plan.
A seizure action plan helps you and those around you tackle whatever happens if you have an episode. With proper planning, you will be better able to enjoy life as you wish.
What is in a seizure action plan?
A seizure action plan includes information about what to do to help you during a seizure. It includes enough detail to help someone understand what is or is not an emergency. It also lets people know how you would like to be supported during a seizure. This information helps prevent unnecessary 9-1-1 calls and trips to the emergency room.
You should review your seizure action plan with your neurologist to be sure no important information is missing.
Your plan can be on paper or electronic. However, it must be easy for other people to access while you are having a seizure. You should share your plan ahead of time with the people most likely to be around you during a seizure, such as:1,2
- Family and close friends
- Coworkers
- Human resources
- School nurses and administrators
- Members of your healthcare team
The information in your plan should change as your life, treatments, and seizures change.
Information in a seizure action plan
Your seizure action plan should include basic seizure first aid tips for people to follow to keep you safe. It should also explain when to call 9-1-1 versus when to call your doctor or emergency contact. Your plan will also include:1-3
- Your name, address, and date of birth
- Emergency contacts and their phone numbers
- Type of seizures you have
- How long your seizures usually last
- How often you have seizures
- What happens during your seizures
- A list of your regular medicines and supplements
- When to give you rescue medicine and how much
- Where to find your rescue medicine
- How to care for you after the seizure ends
- How long recovery usually takes
Finally, your plan should also outline any special instructions for first responders and emergency room staff. Be sure to list your doctors' names and contact details, and your preferred hospital. They will also need to know about your:1,2
- Daily medicines and supplements
- Triggers
- Allergies
- Epilepsy surgeries you have had
- Any support devices you may use
- Whether you have a special diet, such as keto
- Insurance details
Hold a seizure drill
Once you have developed a seizure action plan, run a seizure drill. A seizure drill helps people practice what to do during an episode. Practice helps build confidence and reduce fear in those who will most likely be around to help you. Their confidence will help keep you safer during a seizure.2
You should review your seizure action plan once a year and update it with any changes necessary. You may need to update your plan more often if your seizure patterns or medicines are changing. You should also run seizure drills each time your plan changes.3
Use the Epilepsy Foundation’s forms to get started creating your own seizure action plan. Their forms are available in 6 languages.