Did you know that there’s 25 different epilepsy medications? Vimpat, Onfi, Fycompa, just to name a few. What about those terms SEEG and VEEG? Did you have any idea what they meant before or early on in your epilepsy journey? I mean technology sure has come a long way right? The VNS or DBS treatments are out there now. Are you a little confused or overwhelmed yet? If yes, good that was my point! We have so much to consider in our journey that sometimes we need to take a step back.
After I was first diagnosed with epilepsy, I was placed on medication right away. Believe it or not, the medication worked pretty well. I went from full out grandmal seizures to almost nothing. I was able to act like a little kid again, literally! As time progressed, I grew out of my first neurologist and had to seek a new one. This is where lessons were learned and will stick with me forever.
My seizures came back in high school, not the grandmals thankfully. When this situation occurs, changes have to be made medically obviously. We changed around medication multiple times trying to dodge side effects and still cure my seizures. I wasn’t seeing much progress, and with me heading off to college soon I wanted a little more confidence with my medical team. This led the search for a second opinion. While I can’t thank all my neurologists enough that I’ve had, I’m very grateful for seeking my second opinion because that’s where the good has come.
After doing research with my family, I took myself and my seizures to the Cleveland Clinic. It was here where the in-depth analysis took place. They waited on changing anything around before having me do a VEEG and later on an SEEG. They wanted to find the exact locations of my seizures before moving forward. Yes, these couple of weeks weren’t fun but it gave me confidence that things were going to be better. The team here found the perfect mix of medication to limit my seizures and the severity while having no side effects. They have also laid out my treatment plan moving forward with all the technology. I can’t thank the Cleveland Clinic team enough for helping me through this journey.
What I’m trying to say here is that sometimes it’s good to branch out and seek other opinions. Like I said, I’m grateful for all the neurologists I’ve had. However, it was getting that second opinion that brought me to the team that pinpointed my seizures and continue to seek treatments for me. You never know what may happen at that second opinion meeting?