Chronically Clinging to Jesus

      I feel it is important to point out, before moving on to the "One Year Later" part, that one of the neurologists, he was actually the one who diagnosed me....told me that I would "not fall through the cracks...again", he was the one who referred to the University of Louisville Psychogenic Non-Epileptic Seizure Clinic, with the promise that I would make a full recovery. I held onto that. I am young, I have a husband who is disabled with a back that we are preparing for surgery on, and two kids. I wanted to believe I would recover fully.       The neurologist that promise me that, left the hospital. The neurologist, at the PNES clinic found it not to be important enough for me to be notified that my appointment was reset out 8 weeks. I reached out to his APRN, and was told there was nothing she could do with the symptoms that are slowly showing their faces. So now, at 42, I can't write. No, my brain stops telling my hand what to write after the fir...

      After I was admitted, but flown to the better hospital, they did a 3 day EEG on me. It did not show epilepsy, which was a win. But there, I was diagnosed with Psychogenic Non-Epileptic Seizures, which falls under the Functional Neurological Disorder. This completely changed a lot in my life. My personality has changed. It changed my marriage, and stressed B out. I lost my best friend, and I am honestly not sure if it is permanent. If there is one positive, it is that I want to get closer to Jesus.      Other things that have changed, I am not allowed to drive because I have to go 90 days in my state without a seizure. I have numerous a day. While it is isn't technically "epilepsy", I use the terminology, such as "focal", "Tonic clonic", etc. It's just easier. I've lost my ability to write, and my gait is affected. I lost my church years ago, so I have been looking. and I have one in mind. My family will attend on Easter.     I struggle wi...

           So I left you off right as it got interesting. So here is the next part.  My husband, B and my friend made the decision to take me to the nearest hospital. My heart rate was just too high, and I started to be unable to speak. The hospital was literally just down the street, so we hopped in the van. I started to shake and convulse in the van. A little back story, I was already under the care of a movement neurologist, but we heard nothing from him. I had a three day EEG with no results. So, we literally were thinking I had epilepsy like my dad. The rest of the story is as told to me by my husband, because there are a lot of holes in my memory.  We got to the hospital, and my friend took my son home. I was taken straight back. because my heart rate was so high. They took blood and did a "dinky" EEG in the ER (B's words, not mine). I continued to convulse, and they gave me some medicine. I believe it was keppra and ativan. They gave me tim...

  Hi. I'm Amy. Wife for 18 years and counting, mom to two boys. We enjoy our "country living" as we live in a rural town now after moving from a big city. I lived a relatively normal life until I hit 36, and things kind of went downhill. I was in a car wreck, which messed up my back. Things happened with my doctor at the time, so I finally did what my sister was begging me to do. I switched to her doctor, who is a man. There's a whole other story there, but we won't go there right now. Anyway, with my husband by my side, we went to this new doctor. He is amazing. I mentioned to him that when I stand up, I often get light headed, and my normal heart rate was around 115bpm. He referred me to a cardiologist. I did the testing and found out that it was POTS.          He put me on a medicine that helped, and gave me guidance. So, dysautonomia was checked of my box. I was so glad to have answers and a treatment plan. I can't tell you the timing, because I really ...