Epilepsy Update 18 March 2017

Epilepsy is completely bewildering...

When I woke up in the emergency room at the hospital on that Sunday morning back in late January of 2008, just after having had two epileptic seizures out of the clear blue sky, someone should have put up a sign that read: 

Anyone who has read my very first entry- "My Epilepsy Story"- knows that I denied that I had Epilepsy for the first few years after those first seizures, but that it eventually progressed to the point where it could no longer be denied because it began to seriously affect my everyday life. 

I was seeing a neurologist when the Epilepsy began to really impact my life negatively and I told him all that was happening, but his only reaction was to do EEGs, take blood, declare that all was well- and send me home again. I'd walk home in an epileptic daze, pounded by tiny, one second seizures. I felt worse and worse as time went by and it was becoming extremely difficult to continue working. It finally dawned on me that I had a bad neurologist and needed to change, which I later did but which took many months due to long waiting lists. The new neurologist is good but says the damage is done. He can make it better but thinks my seizures my not be able to be stopped completely anymore. 

At any rate it became more and more clear to me that it's up to each and every epileptic to study and research and to learn as much as they can about the illness and how to live with it themselves, and not to depend on doctors for everything. Neurologists are there to keep the medications properly adjusted so that you are as seizure and migraine free as possible, while balancing the side-effects of the medication at the same time. They simply don't have time to teach each and every epileptic the dozens or possibly even hundreds of lifestyle changes they can make that will help minimize seizures and migraines, not to mention the myriad other effects of Epilepsy on everyday life. 

There came a point where I set out to research Epilepsy myself, and thankful I was to be living in the day of the internet! Yet what I found when I began researching was mind boggling! 

Epilepsy is a seemingly infinite, incomprehensibly complex mass of myriad types of seizures, daily effects, medications and combinations of medications, side-effects of medications, symptoms, different combinations of effects and symptoms based on which part of the brain is damaged, and each person has their very own special combination of seizure/migraine triggers, and the list goes on and on and on. 

I was basically the only person I knew with Epilepsy when I began my research so I had nobody to ask where I might get more information. I sat down with my laptop and typed Epilepsy into Google, and away I went... 

I found myriad Epilepsy Foundations, forums, chats. I later discovered vlogs, blogs, and a social networking platform for people with Epilepsy. Nowadays there are also Facebook groups. Over the course of the past few years I've come into contact with fellow epileptics from all over the world and heard hundreds of stories. I was bewildered and totally disheartened for a long, long time, I must admit. I actually thought about quitting because it was only dragging me down more. All my research was doing was throwing up more questions. What exactly were all of those things that were happening to me every day? Seizures? Side-effects of the medication? Was it normal that I was lost in a daze half the time? Did every epileptic's brain feel this bad? Was I only imagining it all? Am I "normal", so to speak? In chats and forums I saw hundreds of people who all experienced a million different things and nobody who experienced exactly what I did. I felt ashamed. I must be doing something wrong. I began to have difficulty being honest with my neurologist because I thought it must all be my own fault that I was doing so badly. 

Over time however a broad base of common denominators seemed to become vaguely visible, kind of like a very, very large pool of symptoms/effects that is in fact finite and not infinite. Everyone with Epilepsy has a number of things from that pool in some combination, and there are often some similarities in the combinations in connection to the damaged region of the brain. In other words people with right temporal lobe Epilepsy- such as myself- seem to often have somewhat similar symptom/effects combinations. I've also met a number of people with right temporal lobe Epilepsy who's illness progression was astoundingly similar to mine, whereas it was completely different with someone who's focal point is just a few centimeters away. 

In the end I discovered that 

so to speak...

I have my own combination of symptoms/effects from that pool of common denominators and it just took me a while to find other people with similarities, but they're out there. 

I feel like one of the things that helped me the most in my search for ways to cope with Epilepsy in everyday life were Epilepsy vlogs on YouTube, as well as various Epilepsy blogs. Questions are answered in a few sentences in forums and chats, but vlogs and blogs go deeper in some way. I guess you could say that the heart of the person comes through and a different kind of connection is established. They share a portion of their life with you. They open themselves to their viewer or reader respectively, and let them see the emotional- the human side of the story in their every day lives. I found myself moved to tears at times and felt like I wasn't alone anymore. I could identify with them. I learned from many of them because I was experiencing many of the same things and they had already worked through some of them, and I was able to benefit from their experience. It was a big help just learning from them that I was "normal", and learning to recognize just exactly what all of the different things that were happening to me every day were.    

That's why I started this blog and that's why I continue writing it, and that's why I try and be totally authentic when I write. There might be somebody out there somewhere who is searching, wondering, 

Am I "Normal"