Ashley & Temporal Lobe Epilepsy
Say hello to Ashley, a certified personal trainer in California who has a form of temporal lobe epilepsy - read her story below.
I am a 22 year old living in California! I’m a certified personal trainer who loves to workout, go on hikes and explore nature. I was diagnosed with epilepsy in August of 2019, I have a form of temporal lobe epilepsy and experience tonic clonic seizures and non visible seizures.
I’m currently 1 year seizure free and take 2 doses of medication every day for my tonic clonic seizures. I still get absence seizures or mini temporal lobe seizures here and there, but they are not as frequent and I now know my triggers are stress, anxiety or sleep - so I am able to control them better.
I started having auras when I was around 17/18 and I didn’t think too much of it, they only lasted 20 seconds and only happened once a month.
Read more: What is an aura in epilepsy?
Career in personal training
Working as a personal trainer with epilepsy was extremely hard after my diagnosis because I lost my driving license for over a year. I started the job in 2019 and I had an aura while training my manager, I passed out and was taken to the hospital. Later that day I ended up having my first tonic-clonic seizure! From there I had an EEG and MRI, I was diagnosed with epilepsy due to all the non visible seizures happening.
My work was so understanding about my seizures and accommodated my schedule and needs. Yet it was still hard to train external clients since I couldn’t drive - I now have my license back as of November 2020!
Read more: Driving with epilepsy
Epilepsy advocacy to me means showing the world that epilepsy is not rare and seizures are extremely common. I raise awareness on my Instagram account @ashleys_advocacy_, to tear down the stigma epilepsy and seizures have. This account has helped me to meet so many inspiring people with epilepsy and hear their stories. I felt really alone when I was first diagnosed and after talking to other people with epilepsy, it made me realize how many people go through it and I know we can all stay strong together.
Seizure first aid is crucial, people should know what to do when someone has a seizure! One particular moment stands out, I was having a seizure in public and turned blue, I almost choked on my tongue until someone finally turned me on my side, which is the MAIN thing to do when someone has a seizure.
Find out more about seizure first aid here.
Using the Epsy app
The Epsy app helps me make sure I take my pills on time because that has always been a struggle for me for some reason! I also love all the articles and stories on the app, you can read about other people’s epilepsy and the research on epilepsy. There is a whole community on there you can connect with and relate to, it’s amazing. It helps me track my auras and triggers as well. In my opinion, this app would be extremely helpful to someone who has auras, seizures, takes anti-epilepsy medication, or wants to learn more about their chronic disease!
Experience with her neurologist
At first my neurology appointments were very overwhelming, I had to leave our first appointment due to an anxiety attack because I couldn’t believe this was all happening. I then got out of my emotions and realized this is just another battle I have to face and it will make me stronger. I now see her over FaceTime due to COVID-19!
Epsy users can connect with their neurologist through Epsy Hub, the platform for healthcare professionals which can be synchronized with the Epsy app, for improved conversations during appointments.
Main message to others with epilepsy
My main message to those with epilepsy is to never lose hope and don’t be afraid to put your needs first when you aren’t feeling well; even if your condition isn’t visible and they say you look fine.