r/kurzgesagt • u/madhoagie • 11h ago
Video Idea I've lost my parasympathetic nervous system and the ability to sleep for 2 years now. Can Kurzgesagt help me get my story in front of researchers?
For over 680 days I have not had a functioning Vagus nerve nor had the ability to sleep naturally at all. I've seen multiple neurologists, specialists, psychiatrists, therapist, and even been part of clinical trials and nobody understands how my body is operating this warped state.
I've had extensive testing from autoimmunity, neurology, cardiology, and any potential cause, and nothing can be sourced as to why my body is stuck in this way. I'm inexplicably immune to benzos and even allopregnanolone, the very neurosteroid responsible for maintaining inhibition in the brain.
The only thing my team of doctors knows for sure is that I lack basic inhibitiory tone in my brain which keeps me from ever sleeping naturally, even microsleep confirmed by a polysomgraphy. I've gone 9 days without sleep before finally getting a sedative that works, a copious amount of seroquel to just smother the brain unconscious every night for the last 680+ days.
Due to not having a functioning vagus nerve, basic human functions don't work on me including my VLPO to engage sleep. I never feel tired, sleepy, or comfortable ever. I get no rebound from exertion, so even just going for a light jog can leave me exhausted with a resting heart rate in the 180s for almost an hour as I get no acetylcholine to balance my body. I'm forced to be sedentary against my will due to not having parasympathetic rebound capacity. I have no hunger at all as no ghelin is ever made so I have to force myself to eat every meal. I essentially have a denervated heart as my resting heart rate is 115 and didn't shift at all during a stellate ganglion block. My heart rate variability has been 5-28ms this entire time and has never improved from anything.
And what is the strangest of all is this was all just brought on by a stress episode. My wife had a traumatic birth and I was overthinking and ruminating about the health of her and my son and I just got into this state from that stress episode and haven't been able to recover from it even though that event is no longer a threat and I've worked through it from multiple therapy modalities that I don't even feel anything for it anymore. No virus, no physical damage, no autoimmune source, and all of my labs outside of my neurology and cardiology downstream of the vagus nerve are 100% healthy and clear. Also my condition isn't degenerative at all. No loss of cognition, memory, motor fuction, or even any brain fog. So everything is working normal except my brain refuses to allow me to ever enter a parasympathetic state again.
We have tired every mechanism in modern science that can lower the sympathetic nervous system and increase the parasympathetic nervous system and nothing has even budged my stuck state. (I'll put a list of all the things I've tired with my medical professionals in the comments)
At this point, after trying everything in modern medicine, my neurologists have essentially told me my zebra case is beyond medical science and they don't know anything else that can help something that isn't operating within what is the current understanding of neurobiology.
Can a case like mine find the right people through Kurzgesagt?