Why this uncontrolled epilepsy?

Posted by zachareycovert @zachareycovert, Feb 3, 2020

3/27/15 was first day I seen my son have a seizure he is 20 yrs 5 mths old. he has since been diagnosed with uncontrolled epilepsy, JME, generalized epilepsy, clonic tonic, silent seizures, osteoparosis, he has broken 6 of his thoracic vertabrae from seizing, broken both shoulders many many times from seizures, broken teeth, fractured hip. today he is 25 years old 4 mths, he had a VNS installed 4-1-19 he had many side effects including chest pains and it malfunctioned the later part of 9-19, on 10-1-19 he went back to OR to have malfunctioning VNS removed and a new one replaced, he has since been left with a left vocal cord paralization and the VNS is not on. it was disclosed to me in passing of july of 2019 by my sons graduating school nurse that he had a seizure while at a wrestling practice and they never notified me nor got him medical help. I have come to find after searching records that on 3-10-10 my son was in an assult which resluted to him having multiple blows to the back of his head, 3-17-10 my son cut his finger at school using band saw and required stitches and at that time he stated that his hand jerked when he was asked how he cut it, 3-23-10 the school nurse and the wrestling coach witnessed my son have his actual first GM seizure and did not call me nor get him to a hospital. My heart screams that my son may have had a closed head injury that went un noticed from the assult that lead to the jerks in his arm that lead to the cut on his finger that later lead to the gm seizure. the blows to head were 13 before seizure, the hand jerk was 7 days after the blows to the head...We never seen anything until 3/27/15 when my son was a busniness man owning his own trucking business and was having dental issues that his dentist had placed him on pain meds for. he has been uncontrolled since first diagnosis. IM SEEKING PROFESIONAL OPINIONS could these events have triggered my sons journey into the epilepsy world?? did his brain patternize during those almost 5 silent years and the stress of the busness trigger the seizures to manifest? ISO HELP... my son is at high risk of Sudden un explained epileptic death, my world has been forever changed and I need to have UNDERSTANDING to WHY

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Dan Noyes | @dannoyes | May 25 7:21am

@jakedduck1 My local neurologist told me it was a psychological issue but when I went to Mayo they told me it was an FND seizure caused my something called CSS. When I saw Dr Sletten's video on YouTube that explained CSS it suddenly explained what causes FND seizures and how I wasn't broken psychologically but that my brain had been rewired due to a variety of issues. What I also loved about it was it also showed me how I could successfully live with it through CBT based approaches to life. I'll never be "fixed" but my best life is in sight. I highly suggest seeing the video. It is Mayo approved. My local neurologist doesn't understand the concept but that it's OK it is my brain and my life. I hope that makes sense.