Trina & frontal lobe seizures

  • January 27, 2023
  • 5
In this article
Trina in her Epsy t-shirt

I’ve worked in customer service for over 15 years, from Taco Bell to a hospital and now a bank. I've always been a people person and want to help others. I went to school for medical billing and coding.

What support do you have in place?

My family is a big support for sure. There’s also being part of the Epsy community and the Epilepsy Foundation. One day at church, a lady spoke to me because her son has seizures and then the pastor said his son who is in college, also has epilepsy. I told them to get the Epsy App as it helps you with the educational articles, and to remember to take your meds. 

Katrina’s epilepsy story

I didn't have epilepsy as a child. It all started with migraines. The big lights above my desk in the bank would flicker, then I'd get a headache and feel cold. At first it felt like my blood level was dropping, but I eat correctly and I’m active. 

In March 2020, I was working out and my sister had taken our kids to a practice. I was going to meet her after, we were on the phone then I passed out and I woke up in the ER. My sister could hear that I went across two bridges and through a Sonic drive in. The car finally stopped when I hit two parked cars in an O'Reilly's car park. Thankfully nobody was hurt or involved and I’m still here to tell the story. 

In the hospital I had an excruciating headache, the doctor said I almost needed two pints of blood. Afterwards I went to see a neurologist, I told him everything and we began testing. The EEG showed as abnormal but not showing exactly what was going on. 

Getting to a diagnosis

Following the last event seven months passed and I had a busy day at work. I went to the restroom, I woke up to my colleagues and the VP standing in front of me. I had passed out. The next day my neurologist in Tennessee told me that I can't drive for 6 months. The tests are done again, and the EEG picks up things he wanted to see. I was diagnosed with frontal lobe seizures which were causing me to pass out and the headaches. 

The doctor told me my brain is in overload. I had been doing too much. Lots of yes' should've been no's and I needed to destress. I told my doctor I don't want to be a patient forever or a zombie. I want to still be me. I want what can help me, but I want to be better as well. Within six months my blood level was better, I’m now taking meds twice a day. My visits have been shortened but he'll still call and check up on me.

Be prepared: 15 questions to ask your neurologist

What are your triggers?

Before my diagnosis I knew I was tired and was getting massive headaches. I would think it’s a small problem, take some painkillers and sleep, then it'll be fine. But why was I always tired? Tiredness is a big trigger, and if I get too hot that gives me issues too. The first couple of days of menstruation can bother me too. My daughter is a big help, she looks out in case something might trigger me. Strobe lights don't affect me but the lights flickering at work would cause a 5-20 second moment.

More information: Guide to photosensitive epilepsy

Epilepsy in the black community

In the black community we aren't always told about everything or taught about different conditions. So it can be hard to understand if you don’t experience something yourself. If I can help someone else, I will.

Find out more: Epilepsy in the African American community

Experience with the Epsy App 

When it comes to menstruation, being able to look back over the past 30 days in Epsy shows me when the auras would come. I was able to spot and confirm this was happening. When I was first given my medications, I knew I needed something to help me remember to take them on time. I love the reminder feature, I can then quickly log it and go. I write all day at work, so I want something quick and easy for tracking. 

What’s your main message to those with epilepsy?

At one time, I was in a place of 'what could've happened' or what may have transpired. What did I miss? If we knew that was going to happen to us ahead of time, then we would try to fix it beforehand. Epilepsy has changed my mentality of trying to do everything, I need to slow down and take care of myself. 

What looks bad now, might not always be bad later. Two years ago I had no idea what it would look like. I'm thankful I'm still here, and I can still do things. I'm now back driving and have my family. Wherever you are, get a good doctor and join a good community. If you aren’t happy with your doctor, there are more out there so find one that works for you. 

You have to take care of yourself, it's ok to help others but you are also a priority. Be thankful you are here, and don't stop fighting for you. I've changed since my diagnosis and I'm thankful for it, because advocacy is important to me. Do your research, and be careful.

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