Ashley & Generalized Epilepsy
Meet Ashley from Idaho. She’s a college student who works two part-time jobs, and lives with generalized epilepsy. Read her story.
Ashley works two part time jobs, one in HR and another at a violin studio. She’s also in college, majoring in marketing with a minor in Mandarin. She loves the theatre and spending time with her golden retriever-Labrador.
Ashley’s epilepsy story
I think I had my first seizure at 10 years-old. I was misdiagnosed with severe asthma for 7 years. My dad has it, so my primary care physician just assumed I had it too and gave me an inhaler. I even had a seizure in the office, but I’m from a small town in Idaho, people are only aware of the big tonic clonic seizures.
Fast forward to the 8th grade, I had a seizure and was taken to the hospital. This time they were labelled as panic attacks. I kept getting misdiagnosed without any testing. I needed to be tested, but no one was doing it. In my Sophomore year, I was experiencing seizures every day. My asthma physician put me on severe asthma medications, and I was put forward for an asthma operation.
I began complaining about some heart pain due to the steroids. I saw a cardiologist who said my heart was fine. Finally, in my junior year of high school, after 8 years of being misdiagnosed, I was sent to a neurologist. I had an EEG and an MRI, and was diagnosed with epilepsy. Even though I still don’t have my full epilepsy diagnosis, it was comforting after all this time to be on the right track. I’m currently preparing to go into the epilepsy monitoring hospital to get my actual diagnosis.
What are your seizure triggers?
My triggers are usually when I’m not sleeping enough, or not going to bed at the right time. I’m very strict with my bedtimes, due to my work schedule. Another trigger for me is when I don’t eat or drink enough, I also need to monitor my heart rate as I can’t let this get too high. I don’t experience photosensitivity but I do experience migraines.
Learn more: Migraine and epilepsy connection
Finding epilepsy community on social media
I run an Instagram page to raise epilepsy awareness, my handle is @epilepsy4id. I started this as when I was first diagnosed my neurologist told me I had epilepsy and nothing else - not even the type. I had to do all my own research. I want to help other people who are in the same boat.
After my diagnosis I started following epilepsy meme channels, which are hilarious! I made one of my best friends from an instagram epilepsy page, we bonded over shared medications. I realized we can help each other out. Once I posted about my doctor suggesting brain surgery, which got loads of support. It felt like people were really there for me. To me, people with epilepsy are the sweetest, kindest and most compassionate people.
Experience with the Epsy App
I love it! It's so nice. I downloaded it to keep track of my seizure numbers, right now I’ve had over 250. I also keep track of my riggers and all the side effects throughout the day. My memory sucks due to the medications and seizures. Sometimes I can't remember taking my meds. I tried three different apps, but Epsy was the easiest to use.
I found that writing down in my notes isn’t very organized, definitely not in the way that Epsy is. The app is a great way to centralize, and see overview of auras and seizures. All this information is nice and helpful to go through at doctors appointments. I currently have a telehealth appointment with my epileptologist once every 6 months.
Message to others with epilepsy
I wish I could say it's going to get easier, you will have bad days. But you'll get better at managing it. Epilepsy is difficult, but you’ll become stronger.
You don't need to apologize for having seizures or feel like you’re taking up space. As time has gone on, I’ve realized that I'm here for a reason - I have as much value as anyone else. For someone just diagnosed, do your research and find trustworthy sources to help you understand your condition.