I just started having seizures out of nowhere with no history or a cause. At first I kept working until it began to affect my work as a retail manager. I'm now learning how to be a housewife. I have two young children, one is 7 and the other is 12 - they are wonderful to the max! At the moment, I am in the process of figuring out what I enjoy doing. I love to run, but only when it’s cooler and not too hot. I play video games, trying to do more gardening, and now my YouTube channel takes up a lot of my time.
Andrea's epilepsy story
I never knew anything about epilepsy or anyone who had it, this was all new to me. I went searching on YouTube for similar stories and experiences. In August 2018, I had a tonic clonic seizure in my sleep, my husband said I flew out of bed into the laundry basket, I became aware 30 minutes later. I didn't know what had happened, except that my leg was sore. I felt fine, and had to go to work at 7am.I worked an eight hour shift but two days later I had the same nocturnal seizures, so I decided I needed to go see a doctor. I experience quite a bit of memory loss but talk in detail about every seizure I have on my channel.
Read more: Epilepsy and memory loss
Finding community on social media
I went to social media to connect with other people, as no one I knew had epilepsy. At the time, the only channels I could find were of people having seizures but couldn't find people talking about their journey, such as going to their doctors appointments or their experiences.
I wanted to make one myself to help other people. From doing this I found a whole new sense of community, I'm just confused and laughing about it. I don't have an extreme version of epilepsy, I'm at the point where I have a few seizures a month - but might have months without one. I acknowledge I'm unique. I've had all the tests, first MRIs, then CAT scans, EEGs both at home and at the hospital. Started having tonic clonic seizures but they are now complex partial. My last seizure was two and a half weeks ago. My doctor is great, she listens to me and works with me, we are still working with my dosages. She tells all her patients to watch my YT videos. I got lucky with her!
I put out videos every Monday and Thursday, people really interact and help to support each other. It's great that there is a big community. It's getting people talking - we are all going through a lot of the same things.
Experience with the Epsy App
I was tracking everything on paper, I have three different paper diaries. But my main way was in my iPhone notes app, I would highlight medication changes and would have to scroll back, which wasn’t too efficient. I needed to find an app that was more organized. Epsy was the easiest to use and I’ve been using it ever since. Thought it would be a great video idea.
Watch Andrea’s Epsy App review here:
Advice for others
Epilepsy can be scary at first, but it can be manageable. It can be horrifying and terrifying. The positive is that there have been so many advances and there are more and more treatment options becoming available. I'd say to someone struggling to just hang in there, things are progressing and hopefully there's something out there that will help you soon.