Keeping a detailed record of your seizures can be a game-changer for managing epilepsy. By logging what happens before, during, and after each seizure, you help your healthcare team spot patterns and tailor your treatment.
It may feel daunting at first, but with some practical steps, keeping track can become part of your routine and give you more control over your condition. Here are some tips to get you started and make your seizure diary as helpful as possible.
Check out how schools can help record seizures
1. Write it down straight away
Try to record details about your seizure as soon as you can afterwards, while the memory is still fresh. Note what you were doing before the seizure began, how it started, and what happened during and after. Even small details-like where you were, what you were feeling, or who was with you-can be valuable. Prompt recording helps ensure nothing important is forgotten.
2. Include times and dates
Always note the exact time and date of each seizure. Over time, this can help you and your epilepsy nurse or doctor see if there are any patterns-for example, if seizures happen more often at certain times of day or on specific days. Recognising these trends can inform changes to your treatment or daily routine.
3. Describe, don’t guess
Focus on describing what you or others actually observed, rather than trying to label the type of seizure or make guesses about what happened. Write down physical actions, behaviours, or anything unusual you noticed, such as movements, sounds or changes in awareness. Honest, factual descriptions are more useful to your healthcare team than assumptions.
4. Use a seizure diary or app
Keeping a dedicated seizure diary, whether it’s a notebook, a printed chart, or a digital app like All About Me, helps you stay organised. Apps can make it easier to log information quickly and may offer helpful features like reminders or easy sharing with your epilepsy nurse or doctor. Choose the method that fits best with your lifestyle.
5. Add triggers and how you felt
If you notice anything that might have triggered the seizure-like feeling tired, stressed, unwell, or missing medication-make sure to include this in your notes. Recording how you felt before and after the seizure can also reveal important clues about your health and help identify possible patterns or triggers over time.
6. Video if safe
If someone you trust is with you during a seizure and it’s safe to do so, a short video can be extremely useful for your epilepsy nurse or doctor. Videos capture details that may be hard to describe and can help healthcare professionals better understand your seizures and recommend the right treatment.
7. Share records with your healthcare team
Bring your seizure diary or app records to medical appointments and share them with your healthcare team. The more information you provide, the better they can understand your needs and adjust your care plan. It’s also a good idea to keep your records up to date and back them up regularly.
