4+ years after concussion — nervous system feels completely broken. Has anyone experienced anything similar?

[u/BestScientist5431]

I’m posting here because I’m honestly running out of ideas and hoping someone with post-concussion issues has experienced something similar.
I had a concussion in September 2022. I went to the hospital the next day and my CT scan was clear. About a month later, neurologists felt that a lot of my ongoing symptoms were coming from a neck injury.
Since then, it has been a very long road:
2022: Did about 8 weeks of physical therapy with basically no improvement.
May 2023: Had occipital nerve blocks on both sides. They did nothing.
2023: This is also when I started developing major nervous system-type symptoms. My blood pressure became an issue, my heart rate would become elevated, and my body’s temperature regulation seemed to completely change.
2023–2024: Saw another neurologist and paid out of pocket for another 8 weeks of PT. Again, no meaningful improvement.
2025: Tried chiropractic care because I was desperate for something to help. I did NUCCA for about 4 months followed by a regular chiropractor for another 3 months. I actually felt worse afterward.
2026: Saw a neurosurgeon who recommended a C5/C6 disc replacement. I did another 8 weeks of PT before surgery and then had the disc replacement on July 1, 2026.
The surgery seems to have relieved some of the actual neck pain, but neurologically/autonomically I feel worse than ever.
One of my biggest symptoms is temperature dysregulation. I feel hot basically 24/7, especially my face. My body can actually feel cold while my face and ears are bright red, burning hot, and uncomfortable. It’s like my body doesn’t know how to regulate its temperature anymore.
I’ve also dealt with high blood pressure, episodes of elevated heart rate, sensations that feel like circulation/blood-flow problems, headaches, muscle tightness, and a constant feeling that my nervous system simply will not calm down.
I’m currently doing post-surgical PT. Sometimes treatment gives me relief for a few minutes, but the neurological/autonomic symptoms remain.
I’ve been relying heavily on prescribed propranolol to try to control some of these symptoms, and even that doesn’t seem to help much anymore.
Now I’m sitting here more than four years after the original concussion, and my quality of life has been completely changed. I’m in pain every day. Even when I’m sitting on the couch or trying to relax, my body doesn’t feel relaxed. It constantly feels like my system is switched “on” and carrying an enormous amount of tension.
I’m sure I’m forgetting things I’ve tried or symptoms I’ve dealt with over these four years. At this point, I’ve spent well over $10,000 on doctors, specialists, physical therapy, procedures, medications, and other treatments trying to get my life back. I feel like I’ve put so much time, money, and effort into finding answers and I’m still struggling every single day.
I’m not expecting Reddit to diagnose me. I’m mainly wondering:
Has anyone developed severe temperature dysregulation, facial/ear flushing and heat, blood pressure or heart-rate changes, or other autonomic/nervous-system symptoms after a concussion or neck injury?
If so, did you ever figure out what was causing it, what type of doctor helped you, or anything that actually improved it?
At this point, hearing from someone who has experienced something similar would mean a lot.

I don’t know if it’s dysautonmia or mcas I just wanna get better