Using Seizure Diaries

 

diary

Tracking seizures and other information can be done in many ways.

  • The diary or calendar should be easy enough so you can use it on a regular basis – every time you have a seizure.
  • It should be one that you can easily share with your doctors, nurses, and other caregivers if needed.
  • Since many people don’t know what happens during their seizures, diaries should be available for others to write down what they see as well.

Some people like to write in a journal, while others like forms that can be easily copied. Computers and other technology may let you record seizures on your computer, phone or other electronic device. Seizures can be tracked on a calendar – these make it easy to see when they occur and track patterns. Or use a log or record – these let you write more details about individual events.

"The key is to find one that works for you!"

Below are a few types to try.

The Epilepsy Foundation’s My Seizure Diary is being discontinued after supporting people with epilepsy, clinicians and the research community for the past 15 years. Today, there is a new seizure diary app, Nile, to continue supporting the large community of electronic diary users.

Nile is the first app designed to support you between visits.

You (or your caretaker) can:

  • Log auras, seizures, and side effects with a few clicks
  • Track your meds, get reminded
  • See your progress over time
  • Get customized content relevant to your symptoms
  • Stop worrying about remembering details at your next appointment

Think of Nile as your personal health assistant, making sure you stay on track. Download Nile for free now on your smartphone or tablet:

Get it on Google Play
 
Download on the Mac App Store
 

Another online seizure diary that lets you track seizures electronically, in this tool you can add videos of seizures and share your information with others.

This paper calendar allows people to record details of what happens during a seizure. This can be helpful for people with more than one type of seizure or when more information is needed to diagnose the type of seizure. When more than one person may be observing and recording seizures, the event diary can be easier to use.

A paper monthly calendar is good to record how often seizures occur. They can be used to track seizures in relation to time of menstrual cycle (for women) or other triggers that may affect seizures. If a person has more than one type of seizure, they can label seizures by letter to make recording easier.

  • Seizure diaries can be used for different purposes. Sit down with the doctor and nurse to find out what information is most important for you to track What would help your health care team, and what info do you need?
  • When tracking your seizures while your medicine or treatment plan is being adjusted, make sure you write down when medicine changes are made!
  • To see if "as needed" medicines or treatments are helpful, write down when they are used and if they worked as expected.
  • To see if triggers or patterns are present, decide what factors you are interested in and write down when they occur.
  • To monitor side effects of medicines or changes in mood, write down if these are present and when they occur (time of day is important too!).

Authored By:

Patty Obsorne Shafer RN, MN
Robert Fisher MD, PhD
Steven C. Schachter MD

on Sunday, August 11, 2013

Reviewed By:

Epilepsy Foundation Communications

on Friday, September 13, 2019

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Forms

Download our seizure tracking app, print out seizure action plans, or explore other educational materials.

Find an Epilepsy Specialist

Ready for help? Find an Epilepsy specialist who can help guide you through your epilepsy journey.