Where to Begin? How my seizures started and the long road to getting better.

 Hi and welcome to my first blog post.  I am not even sure where to start, but here goes nothing.  Four years ago, in June 2021, I experienced my first seizure and while we (my family and I) didn’t know at the time what was going on, it wasn’t too long after that first episode that I was diagnosed with Pyschogenic Non-Epileptic Seizures or PNES for short.  Now, before we get too far into the rest of my journey early on, I would like to explain what PNES is and how it is different than any type of Epileptic Seizure.  So, as you may have guessed, PNES episodes are non-epileptic in nature, but that doesn’t mean they don’t look like or feel like epileptic seizures, especially to the person going through the non-epileptic seizure episode.  Now, you may be thinking, what does she mean by they’re similar to epileptic seizures, but yet very different, well let me explain what a non-epileptic seizure episode looks like, from someone who’s had and still has them.  PNES episodes may look like shaking/flailing, eyes rolling to the back of the head, inability to communicate what you are experiencing, which are all some of the things that those with epileptic seizures experience, but the difference is, non-epileptic seizure sufferers don’t have irrergular brain activity happening during their seizures, like those with epilepsy do, which is how the PNES diagnosis is determined, by doing an EEG scan of the brain.   Okay, so you can get a general idea of what PNES is like versus epileptic seizures, I will also provide some links at the bottom of this post if you are interested in learning more about PNES.  In June 2021, before I received my diagnosis I was in the hospital for 5 days, while my medical team was trying to figure out what was going on/causing me to have what looked like epileptic seizures, but because I had a EEG done while in the hospital and that didn’t show any of the irregular brain activity going on (I actually had a seizure during the EEG) I was eventually diagnosed with Pyschogenic Non-Epileptic Seizures and so my journey began.  Over the last four years I have grown a lot, learned more than i ever thought I would, but I have also missed out on a lot and experienced a lot more downs than ups, due to this disorder and it’s ability to limit what I’ve been able to do.  When I first got diagnosed with PNES and didn’t have as much knowledge and/or resources available as I do now, I had some pretty bad/dark days in the beginning and while there were multiple factors contributing to how I felt about this diagnosis, I knew (even early on) that this is not how I want to live the rest of my, nor should I want or have to let this diagnosis determine the rest of my life.  While it took me a long time to completely accept the PNES diagnosis and understand how it was going to affect my life, it didn’t take long (after being diagnosed) for me to begin fighting to get my life back and live the way I want to live, not how PNES decides I should be living life.  In the beginning of my diagnosis, I had a very hard time coming to terms with the fact that, until I was seizure free (at least 6 months of no seizures) and feeling like myself again, I wasn’t going to be able to drive and/or work and as someone in their early 30s this devastated me and felt like my whole world had come crashing down, which is why I knew I had to fight to get my life back, even if that meant a long road to getting to where I wanted to be.  My whole life I have always been a fighter and perhaps a little stubborn too and while this doesn’t always work in every situation, it has certainly aided in my journey with PNES, because even when I’ve felt like giving up and letting PNES win, I didn’t and pushed through the hard times to get to better times and start feeling like myself again, which for me looks like getting my full independence back, driving and working again, which I haven’t been able to do either in the last four years.  While this journey of mine with PNES has been a difficult one, not just for me (the person living with it), but also for my support system (the people watching me go through it), I wouldn’t (i know this will sound weird) go back in time if i had the chance and try to change the outcome or try and stop the seizures from starting, because ultimately the last 4 years have made me a stronger person and taught me that even when times are tough and everything seems to be going wrong, there’s always something good that can be found even in the darkest of times and there’s a light at the end of the dark tunnel, so never give up on what you’re going through.  I’m so glad that over the last four years I have continued on with this journey of PNES and have finally found that light at the end of the dark, long tunnel and while it hasn’t always been easy, nothing is ever easy.  Although, I’m doing a lot better now with my seizure episodes (they are less frequent and shorter in their duration), I still experience other medical conditions, some that started around the time of my diagnosis and others I was dealing with prior to PNES.  The goal of my blog is to share how I have not only dealt with and overcome so much with my PNES disorder,  but to also talk about the ways in which I have juggled all the other medical conditions I have and what each week looks like for me and what I do day to day to stay active and keep busy.