My Epilepsy Diary

I had several problems over the years with doctors switching me to different medicines whenever I moved somewhere.

Part of the problem was lack of information.  I should have been recording the following information: ALL of my medicine changes, hospitalizations, seizures, and any relevant information that would help a neurologist figure out what is going on.  Many people who have epilepsy keep an epilepsy diary in order to record this information.  I was not doing this and my doctors were having problems with my treatment as a result.

My spouse and caregiver had the brilliant idea of organizing all of my medical records and recording it in a spreadsheet.  They were spread out over several states, so this was a massive undertaking.  We then organized the epilepsy-related information from my medical records into tables, graphs, and charts.  If my epileptologist needs it, I can print it off or email it. (Not being sarcastic, my epileptologist loved the spreadsheet!)

Has my diary been successful?  Absolutely!  My care team has often used it to find out what medicines I have taken and why I stopped taking them.  I have also used my diary to find out other useful information.  I feel more empowered when going to visit members of my care team when I bring it along.


8 thoughts on “My Epilepsy Diary

  1. Oh my goodness! Incredible article dude!

    Thanks, However I am having troubles with your RSS. I don’t understand the reason why I am unable to join it. Is there anyone else having identical RSS problems? Anyone that knows the solution will you kindly respond? Thanks!!


  2. I love the idea of having it at home! I stay with the same doctor for usually a year or two. However, I have always had the concern about if a emergency were to arise and I could not get a hold of the current physician to send our records.

    Thanks for this great idea. By the way, have you ever heard of I found their app very helpful. Thanks again!


  3. What kind of epilepsy do you have? Can you work? Sometimes I have trouble walking with this stuff. Mine might be Temporal Lobe Epilepsy, but that is yet to be confirmed. I’m afraid to go back to work only to relapse due to stress.


    • I have generalized epilepsy, which means that my entire brain is affected and not just part of it. However, increased levels of stress can also trigger my seizures. I have a job that keeps stress at a minimum while giving me a regular paycheck.


      • Oh, ok. I’m a secretary, which can be stressful at times, and people can be mean… but I’m on disability right now. I’m worried that going back to work is going to trigger them again. Thanks for your answer. This helps! 🙂


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