How do I use seizure diaries?  Which one should I use?

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, seizures diaries should be available for others to write down what they see as well.

Examples of Seizure Diaries

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! Here are a few types to try.

  • My Epilepsy Diary: Use the epilepsy.com My Epilepsy Diary to track your seizures, medicine, side effects or triggers.
    • Track events over time or print out reports to share with their doctors, nurses or other people.
    • Share the diary online with others if you want.
    • The diary is available in multiple formats – smartphones, iTouch or iPad.
    • Start using the diary now!
  • WebEase:  This is an online seizure self-management program that has a log for tracking seizures too.
  • Texting 4 Control: Designed especially for young people with seizures, this helps people track when they have seizures and it’s time to take medicines.
  • Seizure Tracker:  Another online seizure diary that lets you track seizures electronically, add videos of seizures and share your information with others!
  • My Seizure Event Diary: 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.
  • My Monthly Seizure Calendar: 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.

Special Instructions

  • 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 changes during medicine changes, 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!).

For more information:

 
Authored by: Steven C. Schachter MD | Patricia O. Shafer RN MN | Robert Fisher MD PhD | Joseph I. Sirven MD on 8/2013
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