Treating and understanding seizures is always easier the more information you have. That’s why keeping track of seizures (and other seizure-like events) is so important. It not only helps doctors get a better understanding of the circumstances around what you’re experiencing, but it can also be used to improve treatment plans and learn better ways to manage seizures in everyday life.
Whether you are keeping track of your own seizures or keeping track for someone you care for, having a record is a great place to start a conversation with your healthcare provider.
Why keeping track of seizures is important
Part of what makes epilepsy and seizures so complex is that there are many different kinds that affect people in different ways. Getting an accurate diagnosis can be challenging, which can also be problematic for getting treatment. Having a first-hand account of your seizures may prove to be valuable for your doctor or neurologist. It can help them get a clearer picture of the circumstances around your seizures, how your seizures affect you, and how they may best be treated.
Keeping a seizure journal
You can keep your own detailed account of your seizure activity in a regular notebook, a document on your computer, or anywhere else that’s convenient for you. Be sure to keep track of all the most important details in a way that will be easy to understand later.
Seizure journals are much more useful when using precise terminology and noting specific behaviours that can help doctors understand what you’re dealing with.
An effective seizure journal should have as much information as possible to help you and your doctors. This means paying attention to the specific symptoms, behaviours, and circumstances of your seizures. It can be easy for things to get complex, especially when you’re not sure what you should be taking note of.
There are a few key points that are especially useful to keep track of in a seizure journal.
Before the seizure — Where were you and what were you doing before the seizure? What changes occurred within the last few hours or days, and were there any warning signs?
Date and time — Be sure to note the specific time and duration of your seizure activity.
Possible triggers — Keep track of any factors that may make your seizures more likely. These could be anything from emotional disturbances, physical stress, a change in your regular habits, being exposed to overwhelming sights or sounds, coming down with an illness, using certain medications, or anything else you think might be associated.
During the seizure — What happened to your mind and body during the seizure? Note any changes in the way you think, feel, talk, move, or behave. This includes your awareness of the event, any unintentional movements, changes in perception or experience, and any physical symptoms like sweating or loss of bladder or bowel control.
After the seizure — What happened immediately after the seizure? How aware were you and were you able to communicate? How much of the seizure was remembered? Were there any changes in mood, any physical sensations in the body, or any other noticeable changes?
Using a spreadsheet
Another option is to use a pre-designed format for keeping track of your seizure activity. This makes it easier to keep everything organised and better understand what behaviours to pay attention to.
The same principles as the seizure journal still apply, but this way you have a ready-made structure to follow that’s easier to share and manage.
Using an app to track seizures
While journals and spreadsheets are both useful, the right app can be a powerful tool for monitoring your seizure activity and sharing it easily with your doctor.
Apps can be used to keep track of your overall trends and statistics, and as a tool for reminding you about medications. They also make it easy for your doctor to get insights from your event history at a glance. Having an app on your smartphone also means you’re prepared to use it at a moment’s notice and you’ll almost always have access to that information if you need it.
Having the power to share all of your recorded information instantly can be a major help as well. With the Seer app, you can track your seizures and share your event history with your doctor for more productive conversations about what has happened between appointments and how your seizures can be better managed. The Seer app uses your event history to identify patterns and cycles, too, so you can begin to notice when you are more or less likely to experience an event. The medication manager allows you to set up reminders to take your medication, helping you to keep on top of your schedule.
[Image description: iPhone with the Seer app downloaded on right. Text on left reads “Keep track of your events. Have better conversations with your Doctor. Download the Seer app.”]