Becoming My Own Health Advocate

My journey with epilepsy began shortly after experiencing a concussion, and it ultimately led to having a temporal lobectomy. I want to share my story to empower others to advocate for their health and outline the challenges I faced. 

Shortly after a concussion in June 2019, I experienced strange, unidentifiable "sensations” that would last 20 to 60 seconds. I would freeze in anything I was doing, and I had extreme brain fog. My family physician was baffled, and after countless tests—including a tilt table, a week-long heart monitor, and blood tests—I was put on anxiety medication. The "sensations" occurred two to three times daily. In August 2020, a neurologist dismissed my symptoms as thyroid issues, without any imaging or further evaluation. In October 2020, I had my first identifiable seizure. I was able to get an EEG with another neurologist who officially diagnosed me with epilepsy. After an MRI and another EEG, we found out that the seizures stemmed from the right temporal lobe and an encephalocele. 

After starting to see the neurologist, he confirmed the “sensations” that I had been experiencing since 2019 were seizures. My seizure triggers were not what people commonly think of when they think of epilepsy. My triggers were eating, waking up, taking a shower, exercising, and my menstrual cycle - all of which are completely unavoidable. My neurologist prescribed anti-seizure medication, hoping to mitigate the seizures.

In the months that followed, my seizures kept getting worse and occurred three or four times daily. My dose of the medication was increased during this time. I did as much research as I could and talked to my pharmacist about any potentially adverse side effects of taking a lot of medication. That is when I advocated trying a different medication, and one week after starting it, my seizures stopped for a while. 

Living without seizures during this time allowed me to get some of my life back. I was able to start driving again and go back to work. However, I would still get occasional auras. When the auras started to come more often, I found myself in the Epilepsy Monitoring Unit (EMU) for a week-long EEG, fMRI, and PET scans. I was told brain surgery would be the only answer as my epilepsy was becoming medication-resistant.

Shortly after this, I experienced seizures for a month but was able to get them under control by adjusting my medication levels. I then went into the EMU for a 10-day stay, this time for a Stereo-EEG or SEEG. This was by far the worst part of my journey. The electrodes implanted in my brain were designed to monitor and stimulate brain activity. The antibiotic that was used dried up my veins, and they had to find a different vein for the IV every eight hours. This process, however, was able to give them the exact location and information needed for the surgery. I did as much research as I could to prepare for my surgery to help ease the anxiety that accompanies the wait. I continued to live my life. I graduated from college, started my career, and moved out of my parents’ house with my boyfriend, who is now my husband.

Surgery finally came in June 2023 and went smoothly. I was physically able to move and speak. The part that I wasn’t prepared for, which I couldn’t find much information on, was mental recovery. A struggle I faced post-surgery was regulating myself. They removed my right hippocampus, amygdala, and temporal lobe. This left my hypothalamus in disarray. I would wake up every day with a pit in my stomach, and my fight-or-flight response was always on guard.

My brain had to relearn a lot of things and make new connections since a portion of it was missing. Because my triggers were everyday experiences, I continue to experience PTSD, but I'm learning and feel safer every day, knowing these traumas are in the past. In November 2023, I had my first post-brain surgery EEG, and I had no seizure activity. I felt lighter. I set up my support system, which included my husband, family, and friends, and learned to rely on them for emotional support.

The health system can sometimes be difficult to navigate. I want to share my story in hopes that it reaches someone who is in the same situation and emboldens them to keep advocating for themselves. Additionally, brain surgery is one of the scariest things I have ever had to go through, but it was all worth it. I was able to get my life back and have been seizure-free since. I know it can feel like you are alone when you are in this situation, but other people are here for support. 

You know your body the best. Seizures and auras are things that have been identified by the medical community as extremely difficult to describe. If you are dismissed and you don’t feel right with your diagnosis, get a second opinion and find a doctor who is willing to listen and help. 

My journey taught me to be an advocate for my own health and to prioritize my appointments. Reading other stories gave me insight into other people’s experiences and resources that I could use for more information. I found that self-advocacy and research played an immense role in helping me persevere. The Epilepsy Foundation is that platform that connects all the dots.