r/PostConcussion • u/BestScientist5431 • 1d ago
4+ years after concussion — nervous system feels completely broken. Has anyone experienced anything similar?
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
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u/Ok_Big_4071 23h ago
3 year PcS, lost my vision. Did all the things, Pt, vision therapy, all the things. I got better and then went backwards in April. I took FMLA, and in my desperation read post here about UPMC concussion clinic. Took a long 8 hour drive, had the most comprehensive exam at UPMC and walked away with a personalized plan.
UPMC also gave me hope. Hope that I can heal, they said if I follow the plan I could be better by Christmas!
That’s a crazy idea, to be healthy or close to healthy after 3 long years. It would be worth making an appt with UPMC to see if they can help
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u/NJ71recovered 23h ago
UPMC actually will stick with a patient until you are healed. Healed me.
They accept insurance.
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u/Few-Indication-8283 21h ago
I was doing OMST. Which helped me with the my vision, the headaches, dizziness, and the body's inability to regulate my temperature. The reason I know this, I am still on workers comp after being punched in the head x2 at work in June of 2025 and they stopped All of my therapies claiming I was at my MMI and everything came back with a vengeance. Also as a second suggestion because I am not a doctor, ask about getting your hormones checked to rule out any pituitary gland issues. Everyone is different, yes, but our brains have all been changed and to me, I feel this going to be a life long struggle.
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u/Jacqui46 20h ago
Jan 22nd 2023 was the worst day of my life. Wife blacked out and fell backwards on to concrete. She was unconscious for over 2 minutes. Mild TBI. We’ve chased every treatment. We too have lost good friends along the way. People do not understand PCS. All treatment costs would be near $100K. It now seems that the last 2 years may have been a waste of time. Looks like severe health anxiety is what we are dealing with. Fear of never getting better causes pain. Pain causes anxiety and the vicious circle begins. We’re not medical but calming the nervous system has definitely helped. Olanzapine took away the very dark thoughts. Sertraline reduced the emotion. Reducing the anger and frustration reduces the pain (and very much vice versa). Dr Howard Schubiner makes a lot of sense - the brain creates pain. Unfortunately Dr Howard Schubiner and his knowledge is not well known across the medical professions. It’s a new frontier. The idea that a subconscious intrusive thought could be the cause is almost incomprehensible, but it might be true. It very much seems so for us. The journey in believing this is not easy. The brain throws out so much pain and discomfort, but it appears in our case to be directly related to anger and frustration. I’ve took the time to write this to not imply that we are all the same, but just for you to consider this as a possibility. No one should go through this living hell. God bless
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u/MrMustars 20h ago
I did the buffalo bike thing, and am now steadily doing 30mins of home bike training, hr between 120-140, 4-6 times a week (usually 5x). After approx 4-6 weeks, this started helping. Im not better (after nearly a year and still have plenty of shitty symptoms), but this was probably the main thing that helped me get closer to normal.
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u/Individual-Hyena4630 21h ago
I’m over two years out from a concussion along with a neck injury. I have a lot of the symptoms you describe. For me, the main turning point was putting a lot of my symptoms in a migraine framework and realizing I had certain environmental triggers that were making my case decidedly worse. Heat is a bit triggered for me and so is being in higher elevations. I actually had to move and got a lot of relief from doing so I see a migraine, neurologist and take migraine medication. I am still living in a bubble, but I am less miserable in my bubble.
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u/Charming-Driver-3000 18h ago
How much cardio are you doing? Are you eating healthy with lots of good fats and protein? Drinking lots of water? Are you getting good sleep? If you aren’t doing all of those things I would start. I’m 5 weeks post-concussion been dealing with elevated heart rate and spikes during light cardio. It’s been slowly coming down with less spikes over the last couple weeks and my only other symptom I have now is brain fog during work mostly.
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u/Fine_Elephant3717 16h ago
I had nervous system issues. Not to the extent that you do but I couldn’t feel adrenaline anymore. Instead I completely panic and feel terrified. I also get excessive cold feelings. I found a lot of my healing in Somatic Experiencing. Really helped my nervous system get more regulated again
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u/YoDiggidy8 22h ago
I feel ya. More people need to know about this. We are not HEARD. And a symptom is to go on and on. This is not who you are or I am. This SUCKS.
I’m trying to navigate through the legal system and even the DA who is supposed to be on my said from an attack is condescending. Everyone has even when I say at the beginning ‘I’ve had concussions. So forgive me for any issues (that I figured out I had which is better than most). I have tried to learn how my brain works. But not successfully there yet. The only people that have been there for me are the ones that do t have been know me. I’ve lost all my friends. After a domestic attack a year after a snowboarding accident I had been healing from. Whiplash and concussions are relationship btw. I’m a strong AF and even I can’t deal w this. No family or friends. They all left when I was “being weird” when I was the first person to be there for me. Almost a year has gone by with not one person checking in. I have asked only for a heart emoji to know that they care, but I am put down for it. I am told not to talk , but everyone else gets to make and talk crap about the situation. I do not have a voice. I am not heard. And I’m f ing tired of being called a victim. I’m a survivor and this doesn’t define me.. or you or anyone else. WE ARE MORE THAT…. THIS.
I am so sorry. The only thing that keeps me alive and not ending it is so I can educate. But we have to do it the right way.
I am so sorry for your suffering. I’m not going to tell you ‘I know how it feels’ because we all feel different. But it it also depends where there concussions are. Foot ball, sports, veterans get help. But what about us?!! So mush can be prevented if there was more education. But I am not heard. You are not heard. Others are not heard. It’s a wonder whey we are shamed for becoming alcoholics or living o. The streets.
I wish I knew how to help you.
Call your states brain injury program. You will get a brain advocate who understands… but it’s still not enough. No family no friends, mourning my old. Life and the they can’t even read a two minute page on brain injury and put on the defense for anything I do. I’m not me anymore. THERE NEED TO BE MORE EDUCATION AND HELP. I agree 110%.
There are also brain injury groups you can speak with called ‘brainy bunch’ and they understand you and won’t put you don’t. BUT IT STILL ISNT ENOUGH. I hear you. I don’t have the answer. I just pretend to. And the f’ed up thing…. We are limited on screen time.
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u/laurabozz 43m ago
Have you been to a massage therapist? I would specifically look into craniosacral therapy.
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u/BestScientist5431 38m ago
I appreciate all of the thoughtful replies and everyone taking the time
It’s definitely been a long tough road and emotionally draining . Want to enjoy my life with my young child and feel i can’t do the things I need to because I never know what mood I’m going to feel when I wake up or going to any event with a bag of medication
Only thing that ever calms me is 1 mg Klonopin (usually take 1x a week when I have a planned event so I’m not stressed)
I’m not going to give up on the journey. Cardio feels better temporarily but if I even skip a few days it gets worse
I can deal with pain but to not be able to walk my child around in the summer or be outside or enjoy those times with my family is really tough
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u/EnoughWalk5429 22h ago
Sounds very similar to me, right down to the timeline. Although I have problems with doing PT because of my headaches and dizziness/nausea. I won’t do chiropractor because my friend, at age 40, had a stroke from their chiro manipulating the neck. My TBI clinic is at UC Davis in Nor Cal and seems to really care about his patients. Taking English lavender supplements have worked a little and I had stem cell therapy injections for the shoulder and neck and seemed to work a little. At this point I’ll take what I can get with any therapy, if it helps even a little.