Keeping a seizure diary or journal can play an important role in controlling your seizures. It can be hard to remember everything about your health between doctor appointments. A seizure journal creates a record so you and your team can spot behaviors or events that seem to make controlling your seizures harder.
One survey found that people with epilepsy report less than half of their seizures to their doctors. Mostly they thought their seizures were not serious enough to mention or were afraid of losing their driver’s license. The same survey found that doctors overestimated how often their patients brought up seizures.2
A diary makes it easier to keep track of what is going on with your seizures. Your doctor can then use this information to:1
- More accurately diagnose you
- Identify and manage side effects of anti-seizure drugs
- Identify and manage your seizure triggers
- Adjust your treatments when needed
Some seizure diaries also link to vagus nerve stimulator logs, medicine lists, and schedules. The most advanced include medicine reminders and create reports so you and your doctor can spot trends more easily.1
What does a seizure diary track?
A seizure journal should help you track several kinds of information that will help your doctor diagnose and treat you. This information may include seizure timing, type, location, triggers, seizure symptoms, and post-seizure events.1,3,4
Basic information about the seizure to be recorded may include:3
- Time of day and length of seizure
- Seizure type
- Location of event
- Symptoms like loss of consciousness, repeated movements, problems communicating, muscle stiffness, or muscle twitches
- Video link, if the seizure was recorded
A diary can also be helpful in identifying triggers. Common triggers include:3
- Changes in medicine, including missed doses
- Missed sleep or poor-quality sleep
- Missed meals or poor diet
- Mood or stress
- Alcohol or drug use
- Hormonal changes such as timing of menstrual period
- Flashing lights
- Infections
Other basics to note are whether you had an aura, awareness change, or lost bladder or bowel control. You will also want to note how you feel after the seizure. This includes notes about whether you can:3
- Communicate during a seizure
- Remember the event
- Feel sleepy after
- Have muscle weakness afterward
Do I need to record all of this?
Talk with your doctor or nurse about the information it is most important for you to track. If your seizure type is well-known, you may only need to record the number of seizures or any changes. If your seizure type is not yet diagnosed or is changing, you may need to track more details about your seizures.
If your seizures are controlled, you may not need to keep a seizure diary at all. You may also need to do it only when changing medicine. Your doctor can tell you how long you will need to keep an epilepsy journal.5
Types of seizure diaries
Seizure diaries take many forms. Some people prefer to use downloaded forms or a notebook and pen. Others prefer 1 of the many desktop or smartphone apps available. Some people use a combination of the 2.4
For instance, someone may keep blank printable diaries around for loved ones or coworkers to use during their seizures. The information can be written down in the moment and then added to an online tracker later.
Some examples of online and print epilepsy diaries include:3,4
- My Seizure Diary
- Seizure Tracker
- Printable diaries in different sizes
- More printable diaries here and here
Some online diaries let you share your information with loved ones or doctors. Others allow you to set up custom alerts to remind you to take your medicine and track doctor’s appointments.
Anti-seizure drugs are only 1 part of seizure control. Most people need to find and avoid their triggers, and spot when their drugs are no longer working as before. A seizure diary helps you gain more control over your health by identifying what aggravates your epilepsy.