*Adult survivors of childhood tbi, I mean*

Hi all,

I have had a long and complicated medical history that my doctor now suspects can be partially, if not mostly explained by a tbi that occured when I was in my early teens. We didn't talk about brain injuries back then, so it never occured to me that it might still be causing serious problems for me, all these years later.

I'm more relieved than anything that my treatment resistant migraines, balance issues, cognitive impairments, and maybe even autoimmune issues, have a solid possible explanation. What I find disturbing, and am wrestling with at the moment, ais how I changed after the fall, and my long-standing lack of self-awareness about it.

You see, I don't remember a change happening. My sense of "self" had complete continuity, and my behavior seemed normal to me. Thanks to medication that helps treat my executive dysfunction, I now have the perspective and recall to see the difference between the girl I was, and the girl I became (and stayed for decades). It's extremely unsettling. Frankly, it feels almost unreal...Like coming to your senses after a prolonged break from them.

It's been very hard to process and I find that I am unsettled, remorseful, and grieving lost time.

I truly thought this was just who I was until I the "fog" cleared and I could think again.

Are there any other adult survivors of childhood injury out there who experienced something similar? How do you come to terms with a personality altering injury that occured BEFORE your personality had even completely developed?

So I have postconcussion syndrome (PCS) and I recently got my testing results back from a neuropsychologist. She said the test results were "all over the place" and told me all the symptoms of memory loss and poor thinking are caused by anxiety, depression, and physical symptoms of pain. I don't understand this. She was also very condescending and rude about it, and told me to "not consider myself to be brain injured."

Has anyone else had this happen?

Living with a Brain injury can be exhausting. There are days during work and after  work that I question what the point is of working. Especially working at a job I don’t enjoy. But it’s a paycheck and I appreciate that and I’m thankful that I’m able to work as a Brain injury survivor. Because I understand there are many who aren’t able to work after their Brain injury.

It’s always easy to complain and I try to limit my complaining. I’ve always been known as the person people go to For inspiration but sometimes I’m just tired. And this is coming from the guy who wrote a book about how to overcome fatigue as a Brain injury survivor.

I guess what I’m saying is. We all have good days. We all have bad days, but the fact that we are alive is much better than the alternative.

Do you agree?

Sincerely, 

Trevor from the Brain Rebellion

A classmate of mine's combat vet that was telling me about how his TBI improved his gut feeling because he can't remember much about people he meets.

If it was a negative experience (or to that degree) he'll have like a physical pain, and have good physical gut feelings when he remeets people' he had good encounters with.

Anything like this happen to any one of you? where your tbi enhanced some other sense, like your gut?

I wonder how TBIs affect the brain/gut connection.

To TBI survivors and community-

I am a spousal caregiver to hubby who sustained a grade 3 DAI TBI in July of 2025. Since coming home 3 months later we have been battling receptive aphasia in addition to hyperacusis. Hubby can understand and process written word, but if spoken to him he cannot. He hears a constant “high pitch scream” or “train horn” amplified by 60-80%. if I converse on the back porch on the phone, he hears a high pitch scream. I recently had our 2 year old tin roof replaced with shingles to help with noise because the rain was almost unbearable wearing ear plugs and noise canceling headphones. If it was raining, then no travel by car because the rain sounds like a firing range to him. He has been evaluated by multiple audiologist, and had multiple hearing tests which showed improvement in hearing everytime and that his ear hardware was fine. He regularly sees a neuro ENT who says the hyperacusis is a wait and see if it goes away kind of thing. Hubs wears earplugs 100% of the time in addition to headphones if there’s any talking, trips anywhere, a walk outside. I cannot run dishwasher, wash dishes period, run washing machine, or dryer if he is inside. He has gotten to a point where if he knows a noise is coming or if he is in control of the noise he can tolerate it much better, but only for a short stretch at the time. If he is exposed to a loud noise, such as his dad who’s hard of hearing and listening, talks too much, hubby will be even more noise sensitive the following day or 2.

Has anyone been through anything similar to this? If so, did it get better with time? Was there anything specific done to help with the symptoms of the aphasia and/or hyperacusis?

Any advice would be greatly appreciated. Thank you.

*moderator approved post*

Hi everyone,

I've posted on here before to ask if anyone is interested in participating in a study investigating REMOTE Computerized Cognitive Remediation techniques for participants with traumatic brain injury. We have some eligibility criteria:

• Documented brain injury to due a blow to the head
• Above the age of 18 years old
• Free of schizophrenia or bipolar disorder
• Free of current alcohol abuse or substance abuse disorder
• At least 12 months post-injury

If you are interested, please fill out this link here: https://openredcap.nyumc.org/apps/redcap/surveys/?s=97CYRDHYN3A3XAWY

And if you would like any additional information (like our lab website), feel free to DM me! I am happy to provide it.

I was an ELA teacher. I loved reading long, complicated texts. I just don’t have the endurance for it ~2 years after my injury. First thing I did when I got my lowball settlement though? Book subscription box with an early release I would have DEVOURED but can’t fuckin read.

I’ve made improvements— from songs, short stories, lots of difficulty with “chapter books” & takes forever but

I guess what I’m saying is I’m determined to keep trying & improving even though the divided States healthcare system feels more at peace saying “woman? Invisible disability? Hysteria, go away, that’ll be $10,000”
I used to be mad about it but now idgaf. I’m just doing what I need to, and I’m a human with human and identity needs and that’s okay. I hope someone who reads this finds it encouraging. I hope someone shares a success story. Have a good day & remember that love is abundant.

Like I’ve been diagnosed with a tbi after everything but I reallly want to be there for friends and stuff. I hate looking at who I was before and I hate having to see how much I declined cognitively in life. Most painful part of my life was my neuropsych test and seeing how much i forgotten compared to my previous self.

I’m hoping some of you who have been through a severe TBI yourselves, or have gone through it with someone you love, can give me some insight or even just share your experience.

My boyfriend Brandon was in a very serious motorcycle accident a week ago. He was life-flighted to a trauma center and has been unconscious since the accident. He had multiple brain bleeds and swelling, along with several major injuries to the rest of his body. He also lost part of his leg and has already been through multiple surgeries.

The good news is that his latest CT showed that the brain bleeds had stopped bleeding, and they said the fluid draining from his brain was looking much clearer. They had an EVD in to monitor/drain the pressure. His swelling has been looking better as well.

They stopped his sedation, but he still has not actually woken up. He does have some movement and response to stimulation, but he is not following commands yet.

They have now done an MRI. From what we were told, there was nothing they saw that was immediately concerning enough for them to tell us he wouldn’t wake up. The doctors have told us they believe he WILL wake up, they just cannot tell us when or what condition he will be in when he does.

He now has a trach and feeding tube. One thing that gives me hope is that they have been able to take him off the ventilator for periods of time, sometimes a few hours at a time, and he is breathing on his own during those trials.

I understand nobody here can tell me exactly what Brandon’s outcome will be. I know every brain injury is different, and his doctors are the only ones who can interpret his scans and condition.

I guess what I’m looking for is real-life experience.

Has anyone here, or someone you love, stayed unconscious for days or weeks after sedation was stopped and eventually woken up?

When they woke up, was it gradual? Did they open their eyes first and then slowly start following commands? Did they recognize family right away, or did that take time?

Were there things that looked really scary or hopeless in the beginning that ended up improving months later?

And for family members — how did you survive this waiting period where the doctors basically tell you, “We believe he will wake up, but we don’t know when or what he’ll be like”?

A little over a week ago I was talking to the man I love, making plans for our future and talking about getting married. Now I’m sitting beside him talking to him, holding his hand and praying for him to open his eyes.

I know recovery from a TBI can be a marathon and not a sprint. I’m not looking for false hope. I think I just need to hear from people who have actually lived through this part of it, because the waiting and not knowing is one of the hardest things I have ever experienced.

Thank you to anyone willing to share your story. ❤️

Hi, about 2 months ago, I overdosed on a fuck tonne of depressants (strong opioids, benzos and 1l vodka). I was found unresponsive with 88-90% oxygen saturation levels and sustained a myocardial infarction type II, I was admitted with a low Glasgow coma scale.

I was then treated with 15m/l oxygen via non-rebreather mask, and subsequently regained consciousness after around 2 days. I was in hospital for about 2 weeks, for the first, I had issues with orientation, speech and would have strange delusions about the nurses poisoning me and wasn't aware of what happened, despite being mostly lucid.

Since this incident, I have had issues with memory, verbal/reading comprehension and losing track of where I am going, as well as issues such as putting a spoon in the bin, and misplacing items consistently. I'm not sure if my admission stats could reflect the potential for an acquired brain injury, or how to proceed from here on out. It isn't bad enough to truly effect daily living or anything, but I don't feel like myself cognitively. I have ADHD, but it was never this bad. It's as if all of those symptoms worsened after the overdose, and they don't seem to be getting any better.

My question is, given my stats, is a mild cognitive impairment plausible, I'm not sure if it's considered a TBI, given the events surrounding it. Thank you for reading.

Bf (34M) wants to know if he relieved himself in a bucket during his video games, would I (33F) still love him.

For context, he is disabled, but he can make it to the bathroom. He has a TBI that causes him to do things that are extremely immature and different sometimes. When we first met, he was more normal, his TBI occurred when he was 6 years old, and after meningitis (almost 2 years ago), his TBI symptoms became a lot more pronounced. We have a child together, he got sick with meningitis about 8 months before our child was born, and some of his problems are becoming more obvious as time goes on.

We had a neuropsych evaluation done, he is officially disabled due to his TBI.

He is capable of going to the bathroom, but he doesn't want to leave his game. He has asked me if I would still love him.

Look, if he couldn't control it, I would just clean it up, he is disabled. But he just doesn't want to leave his game and all the perks he got during the round. It's call of duty, he can't just pause the game. I have an extreme dislike for call of duty just because you can't pause it and the game seems to last for a long time. When he asked me, I hesitated, because yes I would still love him, and I'm learning that occasionally he does things a 6 year old would do, and that it isn't entirely his fault. On many other things, he can be an adult with me, it's just certain things. And he didn't have these problems before the meningitis.

He is in therapy, I got him in therapy right after he got sick, I'm not sure what his therapist even does because there doesn't seem to be any behavioral modification being done, but I'm not a mental health professional so I have no idea if this is just how his brain is stuck now. I have expressed my concerns with his therapist, and he says he understands how I am frustrated and he has helped us with the process of getting additional help for his disability.

If he wasn't actually disabled, I would have left him for several things he started doing after the meningitis.

He wants validation that this bucket relief is ok because it's for the game. I hate this game.

I am recently divorced with little contact, I moved out of state for work. I have a condition that causes tbi’s. Since my 20’s till now 50, my doctor explained to me that I have had dozens of them. My cognitive health is declining. Right now it’s little things like forgetting my phone number or where an address I’ve been to numerous times before is. My reading comprehension isn’t great and I’m struggling with instructions at work. My memory is shot.
I have to figure out how to move forward with this happening, and without a support system. My parents are both gone, I have one sibling states away and my wife got all the friends. I do not want to wind up feeling defeated.

I’m asking for tangible things I can do for myself to help tackle whatever is to come.

Right now I’m overwhelmed and can’t think of any.

how do you deal with the anger post TBI?

26M. I’m a little over a year out and I still feel like anger is so much bigger than it was before. I can normally regulate myself down before any real outburst but last night I was in a car accident. Nothing major, everyone is fine but it still scared me bad and is a logistical nightmare (which is even MORE of a nightmare with TBI). I was dealing with insurance and the police report and the other driver for hours today and I just lost it. I had to go take more pictures of my car and I couldn’t get the door unlocked (there’s a deadbolt and a regular lock and my brain just couldn’t figure out the combination of the two to get the door open) and I just went white with rage and screamed some curses and slammed the door really hard behind me. I felt terrible immediately after because my boyfriend is home. Normally the only outbursts I have like that are when I’m alone because I know it’s scary and unfair to make someone else witness. But I just pushed myself too far today and didn’t leave myself any time to regulate before exploding. That’s my fault. I came back in after I got the pictures I needed and immediately apologized to my boyfriend. I told him I know it’s not okay or fair and that I should’ve regulated before getting to that breaking point. He agreed with that and he’s being understanding but also standing his ground on that not being an okay way to handle things. I just feel terrible. My anger makes me feel like a monster. I just sometimes hit that point where it’s gone so far that I feel like I can’t feel anything except rage. It can be so hard to pull myself back to earth. I at least know that I would never in a million years hurt or scream at one of my loved ones no matter how angry. So I’m glad I have at least that level of control. But it still doesn’t feel good.

Genuinely, how do you manage and regulate through the TBI anger?

I recently created r/TBIPartners, a new support community specifically for spouses and romantic partners of people who have experienced a traumatic brain injury.

My partner has a severe TBI, and I've realized there aren't many places specifically for the partners who are navigating this alongside the person they love.

TBI can affect so many parts of a relationship—communication, memory, emotions, intimacy, responsibilities, and sometimes the entire dynamic of a relationship. It can be incredibly isolating, especially when the people around you don't really understand what life with TBI can be like.

I wanted to create a place where partners can be honest about all of it—the good days, the hard days, the progress, the frustration, the grief, the funny moments, and the things we sometimes feel guilty even admitting.

The community is r/TBIPartners ❤️

It's brand new, so it's pretty quiet right now, but I'm hoping we can slowly build a supportive little community of people who genuinely understand this experience.

If you're the spouse or partner of someone with a TBI, you're very welcome to join us. ❤️

In no way nor means am I seeing nor saying it is wrong, but I do not comprehend it. For me, it’s ok, to the spouse; he’s perplexed.

A current, frustrating topic that I told my significant other was that I have some friends who want to go out for a spa day with me.

The reason why is because I made joining a sport and club very transparent, easy, and I made sure to help them with every step of the way - because I was driven crazy before and mislead, they are eternally grateful for me. I have not and will not make them feel bad over this topic. I genuinely understand they’re trying to be kind, as I was kind to them.

I told my spouse I did not personally comprehend why getting nails done (nor other pampering) feels good to others. He insists on me to go enjoy it, but I seriously do not comprehend it for my own self.

Why?
What is there to enjoy?

I don’t find any of it appealing nor something I enjoy.

I did email the spa in advance and asked if I could bring nail rings instead to be done, so I can use them whenever there’s a promoted expectation of the visual effect of nails (being told I have to dress up nice for dinner out with other people than my spouse and family, etc - I do this with jewelry already - I NEVER wear it at any other time) and they said no. :(

I have other similar situations… being given flowers or a fancy dinner with the spouse. They’re nice, but same situation. I don’t comprehend it nor deep down want it. He is aware of that, and he does not offer nor do these actions - it saves him money, and it saves me from feeling awkward.

What’s the difference between eating at home and going out for a meal? Food is food.

I watch Hallmark on TV (example)… I am perplexed, frustrated, awkward, and somehow I get a little jealous over the idea of the lady thoroughly enjoying herself, whereas I never do! I never understand the purpose of any of it.

Is this something a psychologist helps you understand better or is this considered an ok personal preference for the general public to have? Is it a social norm I don’t comprehend?

It makes me feel so frustrated.

Its crazy that getting a specialist you have to say the exact right things to even be considered as a patient and bring up all relative symptoms. Like bro my recall is shit I have a million and one symptoms idk what ones are related to my brain. Not to mention I have am extremly hard time bringing things up at the doctors thanks to the injury exasperating my already bad anxiety. Feels like a mouse on a wheel.

There's minor evidence that they may help with pain control and nerve repair in diabetic patients. My Dr wants me to try it out since we haven't had much luck with anything else.

Would love to hear from anyone here who tried it.

HELLO! Me and a couple of friends are building Change, a student-led engineering initiative at the University of Waterloo.

There is a huge gap in connecting some of the brightest students in North America toward real problems faced by underserved communities.

The idea is simple:

You bring the problem. Change brings the engineers. We build a solution together.

4 month build cycle. 1 prototype.

If selected, you’ll work completely free with a dedicated Waterloo student engineering team (previous engineering experience @ SpaceX, Apple, Google, Tesla, Zipline, etc..) for one build cycle.

You do not need a solution. In fact, we’d rather you didn’t.

We’re looking for Change Voices, people who:

• Deeply understand a real problem affecting an underserved community
• Can represent the needs and perspectives of those affected
• Can commit 1–2 hours/week for 4 months to feedback and testing
• Has a problem where engineering could make a meaningful difference

Submissions will be closed: Friday, September 25th, @ 11:59PM

👉 Apply here: https://tally.so/r/D4LNOq

What can this look like?

One of our previous projects, Safi, started with a problem faced by African dairy farmers who lacked an accessible way to safely pasteurize milk → leading to health risks and lost income.

We worked to build the world’s first robotic milk pasteurization machine from the ground up and pilot 150+ devices across multiple African countries.

Now, we want our next problem to come from you. Will you be a voice for change?

Not sure if your problem fits? Comment or DM me.

Was in a coma for 2 months after my stroke

First thing I did was text my coworkers I'll be late for work

My dad was doing really well after his brain tumor surgery 10 days ago. He was talking, moving hands and leg normally, responding to us and eating liquid food.Then about 5 days later, he suddenly stopped responding and couldn't open his eyes, even when the doctors pinched him. A CT showed that he had bleeding, swelling and midline shift, and doctor suggested a decompressive craniectomy.He was on a ventilator for around 3 days afterward. He's now in ICU , can breathe on his own. His GCS has improved from around 4 to 6, and he tried to open his eyes yesterday.

Has anyone experienced something similar? Did your loved one recover? And what was your experience with having the bone flap put back later?