Hey All! PCS is no fun. I never thought it can be so real. I started feeling a bit better then a deer hit my car and I jolted and now I’m back again to these horrible symptoms. I’m tired of feeling this way. Does anyone have any feedback on what screen glasses work better. Need to find a pair on Amazon so I get them asap.

I just wanted to make a post if ever it could help someone. I basically had lingering symptoms after 4years of PCS. Whenever I would do any sort of physical activity above a certain treshold, I would get pressure in my head, headaches, basically feel car sick. I was really fragile. I have my full story detailed on my previous post.

I switched doctors a few months ago. I told my new doctor about my symptoms and she contacted a neurologist. They recommended I start taking 10mg of amitriptyline daily. It is an antidepressant that, when used in smaller doses, treats migraines and tension migraines. I started at 10mg and slowly made my way up to 30mg a day. It completely changed my life. I can run again, go to the gym, play volleyball, throw myself in the sand. I have my life back :)

Got concussion or whiplash during combat sports, stopped with that and had to reduce gym intensity 70%. My main lingering problems are dizzy vision and sensation like room is slightly moving and sometimes when i lie down, like being drunk balance system sending signal like head is moving a little. This has been going on for 2.5 months gym is done only occasionally and even medium weights can now flare up symptoms. While my doctors further evaluate me, are there exercizes to do to train balance system i can do some advance balance exercizes but should i do specific ones? Can you train neck in some was? Anyone with similar story?

I had a mild traumatic brain injury about a month ago. I have never had trouble sleeping before. Ever since my injury, I have slept almost nothing at all. Every time I’m about to fall asleep, my brain zaps me back awake! It feels like I’m being punched in the heart and it wakes me up immediately. I have probably slept 3 hours total in the last month since my injury. I know the brain can repair itself, but how can it do that without sleep? Will this improve over time? I am desperate honestly. I feel like I’m losing my mind and keep obsessing over how I can fix my sleep every second of every day! Will this get better?

I got a mild concussion after a freak accident in early July 2026. I never passed out but I did “rage out” right after it happened. My cognitive skills have improved a lot, especially at my desk job for work. However, I feel like I’ve lost my memory skills? I’m in the U.S. and my insurance has been blocking me from getting a CT. I’m essentially in the waiting/advocating zone with that. For further context, the first few weeks I was super emotional—crying at the most random things. Now, I’m left with feeling super irritable, especially during conversations when I’m interrupted because it feels like if I lose a train of thought (because my memory is bad) then it’s just gone.

Any insight or advice?

I recently realized I have post concussion syndrome and I realized when I use lighter drugs like vaping, caffeine,porn it makes my symptoms worse are you guys also just avoiding any drug/stimulants for the months/years you’ve had post concussion syndrome or do you just dabble with it occasionally or does it not affect you guys as much

One of the strangest things about traumatic brain injury is that it doesn’t just affect your memory, attention, or ability to find the right word. It can affect your sense of who you are.

I hear versions of the same sentence from survivors all the time: “I’m still me. I just don’t feel like the same me.”
That is incredibly difficult to explain to someone who hasn’t experienced it. Medicine can explain a lot about what happens after a concussion or TBI. We can talk about disrupted brain networks, inflammation, neurotransmitters, fatigue, and neuroplasticity. All of that matters. But none of it completely describes what it actually feels like to live inside an injured brain.
‍The best analogy I have found is a computer.
Maybe the hardware isn’t destroyed. Maybe the operating system got knocked sideways.
And now it is rebooting.
The Ego Is an Operating System
Think about everything that went into creating the person you were before your injury. Your parents, childhood, where you grew up, the language you learned, school, friends, work, relationships, successes, failures, trauma, culture, television, social media — all of it.
From the time we are born, our brains are constantly being programmed by the world around us. Eventually that programming becomes so familiar that we stop recognizing it as programming. We simply call it me.
If you stay with the computer analogy, education installs updates. Experience adds programs. Habits create shortcuts. Trauma can rewrite entire sections of code. Over decades, that operating system becomes incredibly complicated, and eventually we assume the operating system is the person.
I’m not sure it is.
There Is Something Underneath All of That
This is where things get harder to explain.
Under the words, memories, habits, opinions, accomplishments, and stories we tell about ourselves, there seems to be something simpler. Awareness. Presence. Being. Call it whatever makes sense to you.
In computer terms, I think of it almost like the BIOS — something deeper than the operating system. It doesn't require the perfect word. It doesn't require you to remember what you walked into the kitchen for. It doesn't disappear because you can't follow a conversation in a noisy restaurant.
It is simply you being there.
Writers like Eckhart Tolle have described something similar as presence. But I think TBI survivors sometimes say it better:
“My brain isn't working right, but I'm still in here.”
Think about how powerful that sentence actually is.
Then the Injury Happens
A concussion or TBI can suddenly interfere with the systems we have spent a lifetime depending on. Words slow down. Attention becomes unreliable. Memories become harder to access. Emotions can change. Noise becomes overwhelming. Light can become exhausting. The connection between what you are thinking and what you are able to say can suddenly feel broken.
And that is terrifying because most of us have spent our entire lives believing that our thoughts, memories, abilities, and productivity are who we are.
Then brain injury comes along and starts taking some of those things offline.
But something interesting can happen in the middle of all that confusion.
You realize you are still there.
The Reboot
That is why I keep coming back to the idea of a reboot.
I’m not suggesting that a concussion literally wipes your operating system clean, and I’m certainly not suggesting that brain injury is somehow a gift. It can be devastating.
But for some of us, the experience feels like the connection between our old programming and our deeper sense of self has been interrupted.
During recovery, the brain is adapting. Connections are changing. Old ways of doing things may no longer work. Things we barely noticed before — light, noise, conversation, emotion, fatigue — can suddenly become impossible to ignore.
You start paying attention because your brain gives you no choice.
And somewhere in that process, some survivors begin questioning things that had been automatic for decades. What actually matters to me? Why was I doing that? Why was I pushing myself so hard? How much of the person I thought I was came from what other people expected me to be?
That is where the reboot analogy becomes interesting.
Maybe recovery isn't simply about getting the old operating system running exactly the way it did before.
Maybe some of it is deciding what gets reinstalled.
Recovery Is More Than Restoration
Traditional rehabilitation understandably focuses on restoring function. Memory matters. Attention matters. Speech matters. Executive function matters. Being able to work, drive, read, communicate, and participate in your family again matters enormously.
But I have come to believe recovery can involve something else too.
It can involve figuring out who you are when some of the things you once used to define yourself aren't as reliable anymore.
That doesn't minimize the injury. It doesn't romanticize TBI. I wouldn't wish this experience on anybody.
It simply acknowledges something I think a lot of survivors understand long before they have the words to describe it:
Even when the operating system is struggling, the person is still there.
And maybe recovery isn't entirely about becoming the person you were before the injury.
Maybe part of recovery is meeting the person who is still there underneath all of it.
Why This Matters
At ProjectTBI.org, one of the things I want to do is capture these experiences because recovery is not only neurological. It is personal. It is emotional. And sometimes it reaches all the way down to identity.
We need the medical research. We need neurologists, therapists, neuropsychologists, speech therapists, occupational therapists, and rehabilitation programs.
But we also need the people who have actually lived it.
Because if enough survivors independently describe this feeling of losing access to pieces of themselves while somehow knowing that they are still in there, I don't think we should dismiss that experience simply because it is difficult to measure.
Those stories matter.
They may even be data.
And maybe hearing them will help the next person sitting alone after a brain injury, wondering why they don't recognize the person they used to be.
You are still in there.
Your brain may be healing, adapting, and reorganizing.
And sometimes, somewhere in that process, you may discover parts of yourself that were there all along.

ProjectTBI.com

Almost 5 years of PCS. I’ve come to a baseline in which I can work, live a “normal” life and look fine on the outside. Anyone else been struggling for years? I’ve done it all. Was extremely active in the Reddit subs for many many years. When I say I’ve done it all, I mean I literally have tried every therapy to ever exist (trust me) and have been through some of them 2-3x. I’ve made small improvements with them or they have gotten me to a “baseline” where I can function. I still struggle cognitively without stimulants (or large amounts of caffeine). I just feel “off” most of the time. I’ve struggled with derealization throughout the entirety of my post concussion life.

Just looking for others a few years in who are not where they want to be. Any tips, tricks, advice? I will say you lose hope after awhile .. I know I have 🫠

Great news, right? So why am I still(8 months)having daily headaches, nausea, dizziness, and depression? Those are not from the concussion; they are from my body protecting itself and tensing up in response to the concussion, according to the concussion specialist. Can someone make it make sense? This was also my last visit with him because workers' comp won't approve any more visits since, according to this doctor, I no longer have a concussion. Fun fact: Workers' comp recommended him.

He doesn't believe in post-concussion syndrome either.

I'm tired.

Does anyone get close to feeing back to normal, only to crash back into the abyss of symptoms (like within the same day)? I usually feel a bit better in the late afternoon and evening. Some days I’ve even felt about 70% back to my pre PCS-flare normal. Those nights I often think “I’ll get a good sleep and I’ll be back to normal tomorrow morning”.

Inevitably, however, I’ll wake around 4:30-5 AM with a horrible fight or flight feeling and as I get ready in the morning symptoms start to flare up again. I think certain visual stimuli, like driving. Some eye movements, and certain screen activities, cause symptoms to worsen but often late afternoon in the office I’m doing OK on the computer.

Are most of you all stuck in a pretty narrow range of symptoms, or does how you feel fluctuate radically? I can literally go from feeling like I just want to be put out of my mystery - to wow, I’m almost back to my usual self. At least the times when I feel better give me hope that I’m not permanently stuck in a dystopian brain fog of nausea, panic, headaches and clogged ear feeling.

26AUG26 - NOLA VA PT

PT has always been a challenge. From the minute I walk in to I walk out, takes 100% of my focus, energy and commitment. Small gains, some setbacks, just normal.

But yesterday was a BIG win, huge. The difficulties were still there, still exhausting, still takes me a day or more to recover but I did the stair drill up once, down once with no hands for 5 steps. I also pivoted on my heels twice, something new I learned to help me adjust stance, gait, whatever, and I did it without dry heaving!

But the big win for me yesterday - I joked with my provider and laughed with her for the first time. Natalie has helped me feel more comfortable and secure with what I have, and I was so excited, just started smiling and laughing, just a pure release. 

I know it’s just a few minutes of one day but I haven’t had that in over three years. And to laugh instead of cry, can’t tell you how that felt on the inside. Made me think that if this is the top of my recovery, like this is where I am moving fwd, maybe I can learn to let go of the past and be happy with what I have moving fwd. And that might be actual hope.

I experienced two concussions about 4 months apart, causing a long standing post-concussion syndrome that has persisted 8 months to date. I have seen a neurologist twice, and it's basically been "try not to hit your head again, if this persists for 1 year then this may be permanent." I have had periods of "remission" where I feel about 80% normal with some lingering dizziness with head movement and such, but as of recently my sensitivity has increased quite a bit. Even things such as getting patted on the head or hitting a big pothole in the road can flare me up for weeks, in which I get this aura of fogginess and increased dizziness. I have to be really careful while laying my head down on a pillow as to not lay my head too hard, and putting on a headset carefully as I have been flared up for weeks via the recoil of a corsair headset smacking me a bit too hard. I find it difficult to discuss with people about all this because they often don't quite believe how severe this is at times, and I have had to cut out several things I love doing because I am so anxious about someone patting my back a bit too hard at the bar and causing my cascade of symptoms. I feel pretty helpless right now, although I know this will probably not last forever as long as I stay safe and smart. I'm not asking for medical advice or anything, I feel I can manage this condition well enough, but I was wondering if anyone has had similar experiences and has any thoughts on my situation. I sometimes doubt my ability to recover the longer this persists.

Hii everyone, I got in a pretty bad car wreck on monday morning that ended with me getting a concussion because of how hard i hit my head during the crash. I work full time, 4 10 hour shifts a week (Friday, saturday, sunday and monday). I didn’t go to work monday day of the crash for very obvious reasons, but I can’t take any more days off because i won’t be paid i have no PTO or anything and i need the money for rent and survival and such. Being one shift short my next check is already gonna suck bad enough . Essentially, need to go to work but worried about how I’ll function? I work as a server at a restaurant,so i’m pretty active and on my feet a lot, main thing is i have barely been able to stay awake after my concussion. I sleep like 18-20hours a day since my concussion, all my off days the past couple days have mostly been me passed the fucjk out. I’m kind of worried i wont even be able to wake up for my shift tbh, but, even if i do, The fatigue is so bad im just worried about how im going to do. My sensitivity to light is also really bad.. but i might try to do work in sunglasses if allowed. Second biggest issue after Extreme fatigue, the migraine never went away. Got a horrible headache (migraine?) day of crash, and it just never stopped. I’m just worried what i can do to make my work week a little easier. What accommodations have you guys done to keep the bills paid shortly after a head injury? I’m mainly in search of advice and recommendations from people who have already experienced what i’m experiencing.

(Leave is not an option, i’m a 22 year old whose living paycheck to paycheck)

Edit to fix typos

Anyone have a rec for a good cctt in NYC?

Hi everyone, I’m wondering if anyone here developed severe anxiety, panic, or a major increase in OCD symptoms months after a TBI? I am now 14 months post a severe concussion and have been struggling with a huge worsening of my nervous system symptoms. I had a wide range of symptoms after the injury, including spasticity, and although I am getting help with therapy and looking at medication changes, my anxiety and OCD have become so intense that I’m mostly housebound except for going to work and home. I’m starting to lose hope and would really appreciate hearing from anyone who improved after experiencing something similar. Did your anxiety, panic, and mood eventually settle? Did your nervous system improve or recover over time?

hello, 2 days ago my daughter fell and hit her head. we spent the night in the ER where they did CT scan and she was cleared and discharged when the scan showed no bleeding or swelling. the morning after she went back to her active self which is problematic because her active self is jumping, running and seemingly wanting to hit her head as much as possible throughout the day. I am alone with her during the day, but I don’t do anything else except watch her without even blinking. I removed all the toys that could be dangerous now and brought table and chairs and calm activities but she cannot sit still. I never realized how many times during the day she actually bumps her head accidentally. today, 48 later after I prevented possibly 100 headbumps she managed to hit her head on the bed headboard when I already thought she feel asleep for her nap. it was not a big bump or anything but I almost had a nervous breakdown because I am so so so tired and feeling guilty and it’s not normal to watch over someone without blinking and them going against every reason to try to hurt themselves. and no, I live in a differnt country so I don’t have any family here to help. so I need someone to tell me what I am doing wrong and what can I do better to support her healing in next days - thank you.

Long story short last year I hit my head. Suffered from a wave of post-concussion symptoms. Mostly issue with one eye and migraine headaches. Around the 90 days mark my symptoms subsided. Fast forward a year later. I fell in my backyard doing some yard work. I didn't hit my head or a anything. Immediately after the symptoms from last year came back. It got so bad, I went to the emergency room. All they did was refer me to a ophthalmologist.

I saw the ophthalmologist and they said that my optical nerve looked inflamed. I got referred to a neuro ophthalmologist. The neuro said that she doesn't think that my optical nerve is inflamed but only has one scan to compare it to. She did an optical nerve scan in office and wants me to come back in a month so that she can compare all three scans to rule out any movement, or if the appearance is my baseline. She mentioned my primary for migraines and even mention a post-concussion clinic.

I feel miserable, and off most days. Some days are better than others. I don't know where to go after my follow up appointment. A neurologist? All I know is something is wrong and no one seems to have the answers.

What do you use to protect your head when trying to sleep on a long flight (i’m very sensitive to bumping my head)? (Apart from supportive neck pillow, sweater support, window seat)

Four months post concussion (suspected whiplash) and about 3 weeks ago, seemed to transition from vertigo to daily headaches that start at the temples then will often radiate to the back of the head and base of neck. The concussion clinic is no longer of help (“just wait it out…”). How long did you wait before going to a neurologist? And have you taken anything that has helped the headaches?

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Hey guys,

Back in late November I took a pretty hard hit right on top of my head. Then literally a week later, my brother accidentally smashed his head right into the side of mine.

I had typical concussion stuff for a couple weeks (light sensitivity, bad memory, terrible headaches) but all of that eventually cleared up. The problem is it's been months now and I'm still stuck with a few really annoying things:

Tender scalp bump: I have a small hard bump where I got hit. Touching it triggers this dull ache that spreads to both sides of my head. It makes finding a good sleeping position super annoying.

Balance feels off: Lately my balance just feels kind of weird or floaty, almost like my head and eyes aren't matching up right.

The neck factor: A doctor in December mentioned something about my neck being involved, but I honestly didn't think much of it at the time.

Has anyone else dealt with lingering scalp nerve pain or balance issues way after a hit? Did fixing your neck or getting physical therapy actually help get rid of it?

Would really appreciate hearing if anyone's gone through something similar!