A system to track seizures
A couple of years and a few hundred seizures later I realized that I needed a system to help track seizures and to help me understand them. It felt there wasn’t as much research, apps or support as it is now within this community. I was certain once I found a way to log my seizures and triggers it would be easier to maintain. I was sure tracking this information would help prevent a lot of them from happening moving forward. I’m an old school kinda girl, so I still use pen and paper to take notes and journal. I also use a paper planner because it is easier to reference it than it seems digitally. Understanding how important it is to track seizures allows me to share health experiences with my physicians and family members.
1. Keep a Seizure Diary
Whether you decide on a journal or an app to keep track of your seizures, just the action of recording this information can help. You may even find better ways to negotiate the ups and downs of your daily life. It is helpful not only to record the information, but to also look back at the journal / app and use the information to help inform your decisions. The information you gather can be useful when making decisions about the meds you are taking, to meds you’ve changed, or even determining when treatment doesn’t seem to help eliminate the seizures.
Here are a few apps to try:
Epilepsy Foundation’s Seizure Diary: https://youtu.be/ADfJ37f6s-Y
Seizure Tracker: https://seizuretracker.com/
Health Storylines: https://www.healthstorylines.com/
These apps are self-management tools for seizures and epilepsy. They focuses on self-monitoring and tracking seizures and other symptoms.
Journaling is another great way to keep track seizures as well. It’s just as accessible as your apps and for some it’s easier to manage and maintain the information. I have kept a seizure journal since 2008. It isn’t as extensive as I would have liked it to be nor does it have ALL of the necessary information because I would forget to update it [memory issues due to seizures]. However, It is helpful to look at how far I’ve come in this journey.
3. Organized Health Info
Keeping up with all your health information can be a challenge. Using an app or a paper journal can help eliminate the anxiety of having to remember or keep track of random papers you need when you visit the physicians. Having the information all in one place makes it super easy for me to recall my seizures and other health experiences when I go to the doctor.
It is also helpful to monitor the change of your medications and test results over time. Because I have kept really good records of my seizures and the medications I was on, I was able to reduce my medications when my husband and I planned to have a baby. The information was impactful to the level of care and concern my team of doctors had during my pregnancy.
4. Track Your Triggers
Each of us have different situations, things, foods, temperature, movements etc. that can trigger a seizure. Some you may be able to identify these triggers automatically, while others may take a little more time to discover. I didn’t realize many of my triggers until almost 2 years into this journey. Initially, I wasn’t writing down my seizures or my daily activities, so I couldn’t keep track of things the way I should. Once I began writing down what I thought could have caused my seizure it became easier to eliminate certain behaviors and foods from my lifestyle to decrease the number of seizures I experienced.
These are just a few tips on how to keep track of your seizures. I hope this helps as you move through your own epilepsy journey. Please share some of your own tips and suggestions below!
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