Personal Stories: The 3 things I did to manage my epilepsy
June 27, 2017
Jen L. who has had epilepsy since she was 21, explained what actions she has taken to mitigate that affects of her epilepsy.
"I've had epilepsy since I was 21. I had several tonic-clonics and spent 4 years trying various meds until i settled on Lamotrigine. I spent 2 years on that, and then had no more fits so I was able to come off meds.
I had no further trouble until 2012 when i had to pursue another epilepsy diagnosis (i had relocated to the UK and they dont just accept diagnoses from the US), having partial seizures rather than tonic clonics. Before this, i was diagnosed as having "anxiety" by my UK GP.
I kept a strict journal, and found two patterns/ triggers for myself: hormones, and sleep deprivation. In early 2014 i got a fitbit, to start tracking my sleep. I found that on nights where i had documented poor sleep, i would have problems with seizures the next day.
Using my extensive journalling, i was able to go back in time and figure out what was affecting my sleep so badly. I discovered that a medication i was taking for "anxiety" as my GP had diagnosed, was actually making my sleep worse, and the timing of starting the med correlated with when the epilepsy started playing up again.
With my menstrual cycle, it was usually around the time of menstruation, but also around the time of ovulation, that I could see an increase in seizures. I was having nearly 3 seizures a week when i discovered about the sleep.
I eliminated the offending medication, and found that the number of seizures I was having plummeted. Around Christmas just gone, i got the Basis Peak because it offered more detailed sleep information, and I can also see a spike in my heart rate (but not my skin temp or sweating! important distinction) when i have a seizure.
I can now tell when i will have a seizure (which day, i mean) based on how bad my sleep is the night before, and when my cycle is. I'm not always 100% spot on, but fairly close. The Peak's sleep analysis is absolutely the best you can get outside of having a sleep lab in your bedroom and being wired for a somnogram nightly. I can, as i said, also retrospectively, see when I have had a seizure based on my activities at the time and heart rate /GSR spikes. That is similar to the Empatica Embrace's work, but not quite as cool as predicting them before they happen.
Also i decided to get healthy and the endorphins / ketones generated from the running that I do helps keep my epilepsy in line. I have 1 seizure a month now, maybe, and am only on one med, Clonazepam."
Thanks Jen for sharing your experience! Do you have helpful insights and encouraging stories to share? We would love to hear from you. Email us.