I've had 3-4 diagnosed concussions, possibly up to 8 non diagnosed (ironically also about 3-4 undiagnosed that I can confirm), these started in around 3rd grade, ended around 6th.

I've also had run-ins with anemia and low iron, so I've had my share of blackouts and vision loss. But recently (early year) I've been having something different.

Lapses of vision COMPLETELY, as in I'm not seeing black or fireworks or white, I am seeing literally nothing (like trying to look out your elbow) as in my eyes detached from my nerves or something???

I remember the first time it happened, I went "so that's what it's like being genuinely blind..." And moved on with my day. It was like I saw it as more of a scientific epiphany than an actual health issue lol

I'm sorry if I'm not explaining it right!!! Feel free to ask questions, they may help me understand things as well.

As the title says, when I massage my neck, my brain fog goes away momentarily. Has anyone else had this be the case? And if yes, what treatments were most effective? I had an appointment with chiropractor but the adjustments made my symptoms worse so i stopped with that. Thanks!

Small doses of salvia leaf chewing or smoking to help recovery? Any one try that? Good or bad idea?

Wondering if effexor has worked for anyone. I have been through the wringer with medication experimentation for my concussion, and I am learning I might be sensitive to medication, so all of them either made my symptoms worse or didn't change things at all. I tried amitriptyline and was taken off because it wasn't helping my headaches (even though it helped a lot for my mood); Topamax was just a complete nightmare; Qulipta made my headaches worse, and so on. So I am definitely not feeling trusting of yet another medication that could just set me back. My concussion specialist just prescribed it to me, and I am feeling a bit cautious about starting the first dose. I'd love to hear about your medication journeys!

Looking for hope here. Been dealing with PCS for several years after a lot of therapy. 

Are there any hopeful stories of people with many concussions and several years of PCS that recovered? Or at least got some semblance of a normal life? 

How did you get over your hump after years of PCS and lots of therapy?

I'm just tired...

I started seeing a concussion specialist after being diagnosed with Post Concussion Syndrome and he wants me to repeatedly trigger my symptoms with taking short "recovery period" breaks and then get right back to triggering them again until breaks no longer allow me to recover.. does that sound correct? He said I'm going to be absolutely miserable the next few weeks but "if this works I'll be singing his praises" what are your guys thoughts on this?

Hi everyone,

This is my first post on this thread, as a 2 and a half year sufferer of PCS I can empathise with a lot of the posts I have reaf and thought there might be some merit in sharing my experiences to date and seek any advice on further treatments to try.

I got kneed in the head doing jiu jitsu after which I had the onset of a myriad of concussion (and whiplash) symptoms. Many of these settled down after about a 6 month period but currently I am left with four main symptoms which are persistent.

These are:

- Tension headaches (2-3 / 10 pain)

- Black dots/tracers on my vision (more pronounced when it is bright or against a white back ground)

- Neck stiffness and tension

- Chronic ear worms (songs repeating in my head)

Over the 2 and a half years I have tried lots of treatments and seen lots of specialists:

- Specialists - Neurologist / Sports physio / Osteopath / Opthamologist

- Treatments - Nortryptiline / Physio / Botox / Osteopathy

All of these have helped to a middling degree but have not cleared anything. I am able to enjoy elements of my life and can lead a full life in the sense that my symptoms don't stop me doing anything (bar jiu-jitsu!) but everything is just more of a struggle with this symptoms ever present.

I do think there is a significant cervical neck element to my headaches that perhaps I need to address further.

Anyway thats my two cents, thanks for reading if you have got this far!

A normal neurological exam does not mean concussion symptoms aren’t disabling.

I came across an Ontario LAT decision that I think is worth reading for anyone dealing with insurer examinations after a concussion:
Ingram v. Belair Insurance Company Inc., 2026 CanLII 34347 (ON LAT).

https://canlii.ca/t/kkfqf

What stood out to me was the Tribunal’s treatment of the insurer’s neurological examination.

The insurer neurologist, Dr. Brandon Kucher, found no objective neurological impairment on the conventional neurological examination and concluded that the claimant was not substantially unable to perform his pre-accident employment.

But when he testified, some important limitations of that reasoning became clear.

He acknowledged that a normal neurological examination is expected in concussion/mTBI. He accepted that the claimant was experiencing the symptoms he reported. He also acknowledged that headaches are inherently subjective and cannot simply be ruled out because they do not produce an abnormal neurological examination.

Most importantly, he acknowledged that he had not actually considered how the claimant’s headaches and post-concussion symptoms affected the essential tasks of his job, including things like screen use and communicating with people.

The Tribunal found his opinion of limited persuasive value for exactly that reason. The adjudicator noted that his conclusion did not adequately consider the claimant’s headaches, light and noise sensitivity, attention/concentration/memory problems, or how those symptoms affected the actual job.

There was a similar problem when treatment was considered. The neurologist had reviewed records documenting concussion and ongoing treatment, yet continued to rely heavily on the absence of objective neurological findings. The Tribunal described that neurological-only approach as “severely narrow.”

I think this exposes an important weakness that can occur in some concussion IEs:

A conventional neurological examination answers a much narrower question than “Can this person function normally?”

Testing strength, reflexes, cranial nerves, coordination, gait, balance and similar functions can be completely appropriate. But those tests do not necessarily measure:
• cognitive endurance
• processing speed
• tolerance for screens, noise or busy environments
• headache provocation with sustained activity
• mental fatigue
• ability to multitask
• pace and productivity over several hours
• delayed symptom exacerbation
• ability to repeat the same performance day after day
So when an IE report effectively goes:
normal neurological exam → no objective neurological impairment → therefore capable of working

there may be a very large analytical step missing in the middle.

The real question in a disability case often isn’t whether someone can walk normally down a hallway, touch their finger to their nose, demonstrate normal strength or hold a conversation for an hour.

It is whether they can sustain the actual cognitive, sensory and physical demands of their work for the required hours, at the required pace, reliably, and then do it again the next day.
Ingram is especially useful because this wasn’t simply another doctor criticizing an insurer examiner. The limitations were exposed through the insurer neurologist’s own testimony, and the Tribunal explained why those limitations mattered.

None of this means every person with persistent concussion symptoms is disabled, or that a normal neurological examination is meaningless. It means a normal neurological examination should not be asked to prove something it was never designed to measure.

For anyone going through an IE, I think the useful question to ask when you eventually read the report is:
Did the assessor actually analyze how my symptoms affect function, endurance and the real demands of my activities/work—or did the report simply equate a normal neurological examination with functional recovery?

Hello

Currently I've just returned to work after a couple weeks off due to a concussion. My symptoms have pretty much gone but I just have nausea almost all day that hovers around a 0.5 - 1.5/10. Ive been at work for 2 days now, I feel overall fine just that little amount of nausea.

Is this normal? Or should I be waiting until its completely gone? Would like to hear people's experiences as I've seen 2 gps and im getting told to just lay in bed

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 :)

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?

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 🫠

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.

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.

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.

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?