Why Should I Track My Seizures?
Tracking seizures is an important part of seizure management. It can help you learn about your epilepsy, symptoms, and provide your healthcare team with enough information to develop effective treatment plans for you. It can be overwhelming to figure out which method of tracking seizures works best for you. Whichever method you choose to track your seizures, we recommend that you select something that you know you will consistently update. Having an accurate seizure diary will make your doctor's appointments easier. You’ll be able to share patterns, or help your doctor learn more about what your seizures say about your epilepsy diagnosis.
To help you get started, we’ve provided some suggestions below on different ways to keep track of your seizures, as well as what to write down before and after each seizure so you can capture every important detail.
Ways to Keep Track of Seizures
1. Old School: Keeping an Analog Seizure Diary
If you like writing things with a pen and paper, keeping a physical seizure diary is an excellent way to track your seizure activity.
Pick up a notebook, a planner, or seizure diary that you can print out as a hard copy. At the end of each month, make sure to put the completed form in a folder and have it ready for your next doctor’s appointment. If you are a caregiver, check in frequently with your loved one to make sure the seizure log you have written down is as up to date as possible.
The most important thing to remember about keeping a physical seizure diary is to keep it in a place where you can find it easily. Store it in a nightstand, your desk, or somewhere that you or a loved one can get to easily. If you are printing out individual forms each month, make sure the folder where you store the forms is also easily accessible.
2. There’s an App for That: Using Your Phone to Track Seizures
Where would most of us be without our phones? With everything our phones have to offer, these pocket-sized devices keep us on track for almost every aspect of our lives.
Your phone is a powerful tool to track your seizures, and one that many people use out of convenience. Most people keep their phone with them all day. Even if you are unable to get to your phone, you can provide your password to someone in the event of an emergency. If you lose your phone, many of the most popular devices have systems to help you locate it via GPS!
There are free apps specifically designed for logging seizures no matter what type of smartphone you own. Apps, such as Epsy, can help you track auras, seizures, and even send you medication reminders. These apps serve as a “one stop shop” for anything related to your epilepsy. Some people prefer using apps because it keeps information consolidated into one space. Caregivers can also benefit from using these apps. Asking your loved one about their seizures, their triggers, or logging any patterns you notice yourself is made easy through the use of your phone.
The calendar app on your phone is another way to sort your seizure information by day. Simply add a seizure as an event (and remember to record the time of the seizure as well) so you can refer to it when speaking with your doctor. In addition to the calendar app, some people will use the notes app on their phone to log when they’ve had a seizure. You can record the number of seizures you’ve had, what time they occurred, and you can choose to sort the frequency by day, month, or year. No matter what you choose, your phone is a great start to keeping your seizure information organized and ready.
3. Spreadsheets: They Aren’t Just for Work
While keeping data in your phone calendar or notes app is easy, sometimes people prefer to create a bigger digital picture with their seizure data. You can track information about your seizures on a Google Docs spreadsheet or an Excel spreadsheet. Once you have enough data, you can turn your seizure log into tables, charts, and more to help you visualize your seizure activity with your healthcare team. The great part about spreadsheets is that you can log this information on a phone app, your laptop or desktop computer, and even print out the spreadsheet to share with caregivers, healthcare teams, and more.
4. Safety and Tracking with Seizure Alert Devices
Some electronic seizure alert devices can track and record seizures, and also alert caregivers or emergency responders in the event of a seizure. There are a few devices available that can detect repeated shaking movements during a seizure. These may work with tonic-clonic seizures or focal motor seizures with enough movements to trigger the device.
Seizures without big movements (such as absence seizures and many types of focal or partial seizures), are not detected by these devices.
For people who may have a tough time remembering whether or not they have had a seizure due to lack of consciousness, these alert devices can play an important role in seizure monitoring and safety.
What Else Should I Monitor?
Once you’ve settled on the best way to organize your seizure diary, there are a few key items to keep in mind when adding information into your log. You should always include the following items about your seizures each time you log a new entry:
- Time- How long did your seizure last? Was it longer than your average seizure?
- Consciousness- Were you conscious or unconscious during your seizure? Is this different from previous seizures?
- Seizure type- Was this a new type of seizure for you, or have you experienced this type of seizure before? Did you experience any new types of convulsions or symptoms during the seizure?
- Post-seizure behavior- Were you confused, scared, or angry after this seizure? How long did it take you to regain consciousness or feel like your normal self again?
- Rescue medication- Was rescue medicine used to stop the seizure?
- Other- Did you sustain any injuries during this seizure? Was there a potential trigger that caused the seizure? Were there any other differences that you or a loved one noted?
The Epilepsy Foundation also provides an extensive, printable list of events that can happen before or during a seizure that are important to include in a diary.
If you have questions about tracking your seizures or how to use any of the seizure tracking methods described, we encourage you to connect to our 24/7 Helpline online or by phone at 800-332-1000. You can also reach us en Español at 1-866-748-8008.