Hey, I’m Anna, I’m 21 and come from the Midwest - Kansas! My journey with epilepsy began a few years back, I live with temporal lobe epilepsy and experience tonic-clonic and myoclonic seizures. Harry Potter and music are a huge thing in my life, I’ve read Deathly Hallows around 30+ times and I will notoriously quote every single line when you watch it with me..
Like much of the world, we're in quarantine at the moment, so I'm trying to find things to do online. My current obsession is Shark Week, it's become a bit of a tradition since I was first diagnosed to watch it.'
Anna & Epilepsy:
My first seizure was a tonic-clonic, I was working on a program in Church helping kids learn music. It was a pretty stressful morning and I just collapsed. I just remember the feeling of going down, then I got taken to the ER.
Straight away I was prescribed Keppra, and then I had an EEG a week later. It was a difficult time. I’m not on Keppra anymore as it made me feel so tired, I was switched to Vimpat after some trial and error! Following my first seizure, the medication caused lots of brain fog, the first two months are super fuzzy - I wouldn’t make a lot of sense when I was talking and I really struggled with getting a job. I made the difficult decision of leaving college for the year to recover.
One of my most memorable seizures was an 8-minute one in the grocery store. I will never forget it because in the craft store just before I bought a rubber rat (called Fernando!), I still have him to this day!
What are you proud of?
Following my year-off college, I went back. I got through the year after being diagnosed. It wasn’t easy at all, there was so much brain fog, memory loss, and fatigue, but I did it - I got through it. I have support at college, with a student disability plan and I always carry my personal protocol written down in the front pocket of my bag!
It’s important to have this. I’ve had seizures before and I’m lucky to have friends who are able to support me. My friend Jinxx recognized I was having a seizure once backstage (he’s the guitarist for Black Veil Brides!) and took every action and managed to calm everything down before it got too bad. He’s amazing!
Read more: Jinxx's inspirational epilepsy story
How have you tracked your epilepsy in the past?
Previously, I’ve used other tracking App’s that aren’t helpful. Other than that, I have a little notebook I would use. For my medication, I use a pill box. Mainly, I use Epsy to track my medication - Epsy is great as sometimes I will be out and think ‘Oh, did I forget to take my meds?!’ and I can just check right there on my phone. My mind is more at ease now.
Epsy also lets me attribute how I feel to my medication compliance and see patterns.
How do you feel epilepsy is perceived by others?
The perception isn’t great. So many people create their opinion from dramatizations on TV or in movies. People will say things like “it looked like they were having some sort of seizure”. It’s worrying how little people would know what to do in a situation where someone is having a seizure.
Applying for jobs is hard too, however, when you find an understanding employer it makes such a difference.
It is so nice to see people advocating against this nowadays. So many of my friends get involved too - I have taken part in epilepsy advocacy and I love it.
Anna’s message to others with epilepsy.
Don’t be afraid to do what you need to do. If you need to email a professor to extend or cancel a project cause you don’t feel well, do it. If you need to cancel plans with friends, do it. I used to be afraid of being honest like this, but it’s out of your control.
Reach out - don’t do it alone! The support of others is incredibly important. My mum still comes to my appointments, because I can get nervous. My friend’s and family are so supportive and I’m so lucky to have them, please reach out if you need help. On instagram, there is a support network and you can find anything from relatable pages, or funny memes! I’m on instagram as @anna.is.jinxxed!