Keeping a Journal to Help Avoid Seizures
Last updated: September 2022
Ever keep a diary? Let me suggest: Start one.
No, I don’t mean mush like, "Dear Diary, We went boating with the Jones, and I caught a fish!" I’m talking about a gruesome, gory documentation of everything about my epilepsy – dates, times, and circumstances of all auras, seizures, and prescription changes. I'm not seizure-free, but analyzing my seizure diary has identified patterns of plenty of triggers to avoid that otherwise would've made my life a whole lot worse.
Logging my seizures and connecting the dots
My mother introduced me to the idea a half-century ago, during what I call the "Epileptological Stone Age" in the 1970s: only 3 kinds of seizures were petit-mal, psychomotor, and gran-mal. Teachers reasoned "special ed" was necessary for many epileptic kids, and phenobarbital was the "cure-all" med. Now researchers know of more than 40 variants of seizures and there's a growing toolbox of treatments!
Besides being my epilepsy caregiver, Mom also gave me allergy shots. I got 2 shots a week for the first year, weekly for a couple more, and biweekly when we concluded after 5 years. But Mom quickly realized that something wasn't right, because a seizure struck me within 36 hours of EVERY shot!
She initiated logging the dates and times I got my shots and then seized. Once confident that she had unflappable proof something was going on, she brought it up to both my allergy specialist and neurologist. Even though both were the best in their fields for hundreds of miles, they were typical of the Epileptological Stone Age’s "cavemen." Both insisted allergies and seizures were totally unrelated. I remember them as being pompously rude, and treating her like a buffoon!
Seizure triggers: a whole new concept
Mom was increasingly unwavering during my teen years because seizures happened more in the summer, and most were just hours after I mowed the lawn and was congested. Both nincompoops continued shunning her notion that my allergies had something to do with epilepsy. Today's word "trigger" wasn’t even used.
Who was this school-teacher mom to think she knew something that they hadn't learned in med school? Mom's soul is resting in peace as researchers have since proven her idea about allergies to be true!
I expanded Mom's diary concept 20 years later, during the comparatively "Epileptological Iron Age." My neurologist had been traded in for a newer thing called an "epileptologist," who asked if I wanted to participate in testing a new medication — known as pregabalin – he was helping with, and did I ever! Seizures had been occurring at least weekly for years. Medications were hurting my speaking ability and memory, and one even aroused suicidal thoughts.
Keeping a seizure journal for research
That doctor asserted that to be a test subject (a "guinea pig"), it was necessary to faithfully log not just the times of my seizures and auras, but also their lengths, and get eye-witness accounts if possible.
I participated in the program for 5 years. At every appointment, I handed over a primitive dot-matrix computer print-out of the time from my journal. We were moderately satisfied with the seizures becoming biweekly, but I had to drop out of the program when I moved to take a job overseas. (My weekly patterns returned.)
Why am I having seizures here?
During those years, about 1/3 of my seizures occurred at church! I wasn't too concerned since my seizures were discrete and I was in a safe location. But the rate does indicate a trigger. During this "Iron Age," photosensitivity was just becoming talked about – but usually only fluorescent lights or bright, flashing ones.
At church, I always sat near the same stained glass window that was mostly red. I never was officially diagnosed with light sensitivity, but I'm now confident that having bright red sun ceaselessly entering one eye was the reason. It's been over 2 decades since I relocated, and there hasn't been a seizure in church since!
Lack of oxygen as a seizure trigger
I expanded my journaling, and include my activities at the time of a seizure. I had some bad ones while biking on hot days, and also on the treadmill. Epileptologists' dander hadn't yet been raised about the importance of hydration or that a lack of oxygen to the brain (hypoxia) could trigger seizures. Researchers now say as many as 50% of seizures are triggered by lack of oxygen! (Mom deserves some real applause for her notion of my allergies!)
Logging epilepsy medication is important
Every change my epileptologist makes to my medications and dosages is now included in my diary as well. Once, I recorded that my pharmacy refilled my Lamotrigine with a different-looking tablet. Within days, the frequency of my seizures DOUBLED without a change in my diet or lifestyle.
When I told my epileptologist about the seizure increase, he asked me to explain the journal entry about the change in the Lamotrigine. My pharmacist said they'd changed generic suppliers and gave me the names of the first and second manufacturers. My doctor whipped out a letter to my pharmacy that its change of manufacturers had proven "hazardous" to me and that my future refills had to be from the first pharmaceutical company. They gladly obliged.
My rate of seizures quickly declined to its previous rate.
Other seizure triggers worth logging
And for women, when you have a seizure during your menstrual period, it might be beneficial to include the dates of your menstrual cycle because the changes in your hormones can throw your body off balance, too.
It's even benefitted me to include the foods I'd eaten for the last 2 days (seizures aren't triggered immediately). From that, I discovered eating uncooked onions (on hamburgers) caused me to seize within a day.
Seizures persist, but how many more might there have been if a journal hadn't helped me identify these triggers?
Coincidence or connected?
I'm curious, though, if it will ever help me determine whether something more recent is a just coincidence or a relationship. Since I've been on Xcopri, my seizures are remarkably less frequent for the last 3 years, but 30% of them occur on Friday nights.
Also, I've just returned to my computer after supper. And get this: I'm following Wheel of Fortune on the side. So why is it that Vanna White and Pat Sajak never make me seize other nights? And my dinners aren't the same. Or do I simply need to forget about writing anything on the computer and relish an ol' "Thank God It's Friday" attitude? LOL!
Since being diagnosed with epilepsy, has your memory been impacted?