I found out at 23 that I have Epilepsy. I began researching Epilepsy in general, and found very few answers and a whole lot more questions. At 29, I found out from a new neurologist that the type of Epilepsy I have is called Frontal Lobe Epilepsy.
I then started researching THAT. There is even less about that kind, but it’s one of the most commonly misdiagnosed types of seizures because they don’t present like other seizures do. The worst part of these seizures is that when I have mine, I feel every bit of the pain, am conscious of every single thing that is going on, but I have absolutely no control over it. During my last really bad seizure, I began crying because the pain was so intense. At one point I thought for sure my neck was going to break. I had points where I couldn’t breath, and prayed that that would cause me to pass out. It lasted for approximately 30 minutes. It was truly Hell.
This is a frightening, painful, and lonely disease. It changes your whole life, and can make people who have it feel extremely isolated. There is no cure yet. The best we can hope for is that our medication will work. Even then, relapse is likely. Brain surgery is a frightening idea, but a possibility. We need a lot more research before we will have any hope for seizures free lives. We also need more advocacy and awareness for the general public. Any help will be greatly appreciated.