Currently I’m fixated on the game ‘My Time with Portia’, which has accessibility issues for people with photosensitivity. There are in-game weather patterns, but it is possible to turn off the lightning (find out more about seizure safety and video games). I personally experience photosensitive seizures, however, my main triggers are tiredness and stress.
Learn more: Stress and seizures
Parker's epilepsy story
I was diagnosed at 22, but I have experienced seizures my whole life. Up until 22, the doctors told my mom that I was faking it or trying to get attention. “All kids have these issues”. As a child I'd have four tonic-clonic seizures a year, in school I would have absence seizures and pee myself - this got me a nickname! I was put on ADD meds, tried it and the meds gave more migraines. My grades improved, but it didn't mean much as I still wasn't sleeping or eating. I was having behavioural issues and I wasn't doing well.
I decided to stop the meds but things got worse, so I tried again in my senior year. By 22, I was living with my aunt. She pointed out unusual patterns such as balance issues and zoning out in the middle of conversations.
She demanded I be seen by a neurologist, and told the doctor everything she's been seeing. I was instantly put on meds, had an EEG and MRI. They found a dark spot on the left side of my brain, which could be either a birthmark or a brain injury from childhood - I had fallen out the front door, onto the soft part of my head at 18 months. This led to the first seizure my family had ever seen.
After the new meds, I felt clearer and started to communicate better. I felt cheated because I didn't have this functionality growing up. I still have breakthrough seizures, we’re still figuring out the right combination of meds. I went from several seizures a day to several a month over the course of 12 years.
Finding community on social media
In 2012, I started reading a comic (which was quite triggering, as it is quite flashy). I started posting on a message board, to find a workaround for photosensitive epilepsy. They suggested blue lens glasses. Then, I started a Tumblr blog for other people with epilepsy issues. A bunch of us would work together, it was amazing to know people were working together to make it safe. After Tumblr, I couldn't find a community for a long time. I then became curious about TikTok, which has accessibility features for photosensitive epilepsy. It's a small community - but there's a great number of people who are active. I think finding a community is a big deal.
Using the Epsy App
I'm using the Epsy App to track my meds, whether it's one-off or my AEDs. If I'm having an aura, or if my partner / cat notices - then I can log that I went unresponsive and for how long. Before Epsy my neurologist would ask about any new seizures, and I'd say I didn't know and my partner couldn't remember.
Now I can just scroll through my logged events in Epsy. That makes me feel I'm not losing my mind - it's so helpful. I'm getting a new neurologist and they will get my Epsy connection code because it's a lot easier, I've had issues self advocating in appointments previously. But having this overview to show is a big deal.
Epsy App users can connect with their epileptologist or neurologist via Epsy Hub, the platform for healthcare professionals. Find out how to connect with your doctor here.
Do you find Epsy useful?
Epsy is absolutely useful to log your meds, and to show how diligent you've been about taking them. All of the events, such as seizures logs, are useful when working with your neurologist to treat your epilepsy. Do whatever you can to minimize the seizures you're having. Some people go years seizure free, I want that!
Message to others
Epilepsy is scary, but it doesn't have to be. You don’t have to go through it alone. Some parts might haunt you, but it’s easier if you have people to speak to about what you're going through. If you're on top of your meds and working well with your doctor, you can have an almost normal life.
It takes time and lots of hard work but it shouldn't hold you back forever. You might not be able to do some of the same things as others, but your existence still has value and weight. You shouldn't be holding yourself back because of how other people might treat you. A lot of people with epilepsy have depression, talking to others and making connections is vital. I was depressed for a good number of years. It's no one's fault you're having seizures, it's just something that is a reality. But you don't have to do it alone.
Read more: depression and epilepsy
