@nbean08 I have one very important thing for you to consider. PNES or FND seizures is not a psychological problem. My local neurologist said I needed to see a psychologist to deal with my FND seizures. It turns out that this psychologist wrote a book on the subject, which I quickly read. She covered the importance of practicing CBT principles in daily living, addressing any emotional trauma, and practicing stress management strategies like exercise, mindfulness, deep breathing, etc. I was confused because I had already been doing all that. So I called the psychologist and she said I was doing everything right and there was nothing more she could do to help me.

FND or PNES can make you feel less validated and almost ashamed (just being honest). My local neurologist told me he couldn't help me because my seizures were both FND and epileptic seizures. This just left me feeling like an oddball once again.

When I went to the Mayo Clinic EMU I was made to feel human and validated. My FND seizures were not in my head. My brain had been rewired, and therefore, my FND seizures were simply a result of this rewiring. They told me about CSS and how they have a program to help us live with FND seizures (it's called the PRC program).

To give you some perspective, I am a year into my Mayo treatment plan. They validated my epileptic and FND seizures. They made me feel whole and not just another oddity like I was made to feel locally. I just had a call with my Mayo neurologist on Friday and he told me FND seizures are very hard to understand and there is uncertainty amongst the best neurologists in the world. For example, the UK validates FND more clinically and with research than in the US. My Mayo neurologist also told me that FND seizures are incredibly common, so just know you are not alone.

Thank you. I have had a video EEG but that was years ago. At least 5 years ago. These seizures are very different. I’m going straight to my PCP right now and together we are trying to find the right neurologist for me.