Nessa & Catamenial Epilepsy

  • February 19, 2021
  • 5
In this article

Nessa was diagnosed with catamenial epilepsy at 22 years old and has been seizure free since 2018. Read more below.

Nessa’s music career and journey

I was in the music industry for over 8 years and had to take a hiatus due to my health. I really felt like I was on a good track; I’d written over 800 songs and was an emerging songwriter and country artist, who had performed at two American Country Music Awards.

Then I started to have fainting spells, I didn't even think it was happening, they just seemed like weird moments or hallucinations (I now know these were auras). My doctor would say "you look fine! you look healthy", but I just knew something was wrong. Those who weren’t witnessing it at the time were telling me I was just exhausted or that I’m drinking too much, but there was much more to it than others or even myself realised.

Music was a great experience, but the lifestyle was killing me! I still have my best friends in the music world, being part of this world is like being knitted into a quilt, you're never knitted out. But I am so deep into school right now that songwriting is the last thing on my mind. It's always there but as of right now it's not my main focus.

How did you get into music?

Country music happened because I used to perform at charity events, I met a singer from Nashville. He said to me 'have you ever thought about singing as a career?'. In my town, you go to school and either become a doctor or a lawyer- we didn't even have a music programe in my school! He introduced me to some people - they listened to me sing and reacted 'your voice isn’t really country!?'. After a while I ended up switching genres to pop and then into EDM music. It was fun because I felt there is a wider range of creativity and also my friends thought it was more fun. 

Learn more about: EDM music and stroboscopic epilepsy

How did your epilepsy journey start?

When I was 22, I was making tea for my nephew, I went back to the kitchen and I fell - my younger brother was in the room and called 911. I'd had a tonic clonic seizure and had fallen onto an antique table. Everything changed so fast: my drivers license was taken away, and I’d gone from making my own schedule and plans to being told I couldn’t do anything on my own anymore. That was the hardest pill to swallow for me!  You have to change every aspect of who you are, not just your career path. 

After we found out it was epilepsy, I had a direction to go in, I decided to go to a functional doctor because of recommendations from other people with seizures. The doctor conducted lots of tests and findings from these helped me eliminate foods that triggered my seizures. 

Living with seizure freedom

I’ve been seizure free since 2018, but I still log my auras and feelings. My auras, or my down days where I just feel off are more infrequent. I can now drive but I will only drive by myself. I don't like to have people in the car with me for fear, if they are in the car with me, I ask them to drive.

Learn more about: driving with epilepsy 

From music to functional medicine

I now think my seizures are a blessing. At first, I thought that it was the end of the world, but it was just a brand new start. It’s led me to functional medicine, and I'm currently finishing my Master's degree in preventative medication. I want to focus on the post-surgery treatments but BEFORE you get the treatment.

I want to help people. Since I came into the epilepsy world, I’ve had people message who do not know what to do or what’s causing it. I really would like to guide people in the direction that I found. It's a generic enough way: "they can take something out of my path, and apply it to theirs".

How do you use Epsy?

I really love being able to mark my auras. I used to log them in the notes on my phone but then I would lose track. I like that Epsy is a concentrated spot where I can find everything. When I have an aura it takes me back to a memory, I can log that in the app and write down the notes. I am also so terrible at remembering to take my medications, I use Epsy to remind me and to record the time I take it - I think that's really awesome. The care team is also a really nice feature!

The content is great too, I like to read about different conditions. I’ve mainly been using Epsy to track my auras and medications - personally two of my most important health things to keep track of. It’s useful to be able to share it with my doctor is such a great synopsis of your health.

Nessa’s message to others with epilepsy

I would say 'don't just listen to a doctor, obviously they have a great amount of knowledge but take it with a grain of salt and listen to your body. The doctor is not you, they aren't in your body. You have to trust yourself. If you don't feel that something is 100% correct, listen to yourself. I went to 4 different doctors before I found my seizure specialist, they all had a diagnosis that was wrong. Don’t live and suffer with epilepsy - try and find the root cause. Don’t just accept one answer! It might take 100 questions, but you'll get there.

Share article

Get the #1 epilepsy app now

Read next