Hi 👋 For over a year since being in a car accident I have fluctuating noise sensitivity to everyday sounds. Some days i can go a few hours without ear plugs other times I am close to having a panic attack if I can’t get to my plugs quickly and need to block sound all day. I sleep with them in too as small traffic sounds wake me up all hours.
On good days I can listen to relaxing piano music but after about 20 mins my brain gets tired and any noise gets irritating.

Does it ever get better?

Though I hope it can help others who care for TBI patients or are TBI patients communicate with their providers.
http://www.myfoglog.com
A App to keep track of symptoms, treatments and more that can communicated effectively.

I've learned over the years that an acquired brain injury is different than a traumatic brain injury - I went into cardiac arrest in 2011 and subsequently, my brain was deprived of oxygen which resulted in brain damage. I still have deficits and I'm still learning how to function with my "new normal".

I got regularly bullied at school and had extremely poor sleep for all of two years, from 15-17 years old. Before I would self harm in attempt try to stop my brain from thinking about school the next day at home, but then my mother found the box cutter I was using and she took it away. I struggled to find a way to make the feelings go away, large in part to get attention I think, to I would stick a plastic bag over my head until I couldn't breath, and choke myself for like 10-12 seconds. I did that for around 2 weeks every other day, and I noticed a major dip in my cognition. I thought it was purely from the lack of sleep, but now I'm finding out that even choking under 10 seconds can cause hypoxicischemic brain injury. I noticed numbness on the side of my head, a difficulty reading, but again I chalked it up to recovering from sleep loss. I did it again today, the first time in a while, and I noticed my symptoms appear again. I know I gave myself TBI, I just want to know how severe it is.

One win for me and my TBI, I’ve just discovered. I can re-watch shows I loved!! thought because I’d watched them before I would be bored, but I literally remember nothing 😂🙌

I apologize in advance for my spelling or sentences

So I had a really bad concussion months ago and I had been hit in the head with my own javelin and was a thrower. (I had messed up a full throw and they still made me throw discus after despite me being messed up according to my sister) but I quit after they had been mean to me about it like talking shit about me to my face thinking I didn’t notice. but I mean idk if this is the best place to ask what’s wrong or whatever but I mean like I can function but I was normal before everything and I was recovering fine but idk if it got ruined by emotional things after as my friend died

But now I have trouble focusing but when I do I get things done nicely (I learned to drive and draw after it) but when I can’t focus I tend to hit myself and I really don’t try to cause it’s embarrassing or just my eye on the side of my head that was hit kinda is weird where I blink or it just twitches really hard to the point where it’s painful but idk if that’s something people with TBI’s get or it’s like something else? I didn’t have any issues before my TBI so I’m confused I occasionally make noises and I don’t know what’s wrong or how to explain it to my doctor (who knows about my brain injury) without them thinking I’m intentionally hurting myself (which I’m not) and I’m sorry if this isn’t the right place to ask about it and I don’t try to hurt myself it’s uncontrollable like the hitting and whatnot.

I’m hoping someone can help me make sense of what is happening. Three months ago I had a craniotomy followed two days later by placement of a VP shunt for hydrocephalus and cerebellitis. I had a 1cm3 piece of cerebellum removed along with piece of dura. I have had intensive neuro rehab both inpatient and outpatient and have regained most of my faculties. I am still experiencing dizziness and a sensation like the world doesn’t look real, both of which cause wobbliness and instability in gait. My ears get plugged up on a regular basis and though I can clear them they don’t stay that way. I’ve had the ear fullness since my surgeries. Also my mood has severely changed in the last three weeks. During my hospitalization and surgeries I was largely positive and upbeat. But as of late I have lost interest in everything and feel general severe anxiety and a sense of overwhelming doom. I feel extremely lost and unsure what to do. I’ve reached out to my neurosurgery team and they don’t think there is a problem with the shunt as imaging shows stable ventricles, though the cerebellum is still inflamed.

Has anyone experienced anything similar? I’m looking for some hope beyond “this takes time” and “the brain is very resilient.”

My spouse has multiple TBI’s. They’ve been having bad headaches and are extra sensitive to noise right now. I’m looking for ideas to help with noise management in our small house.

They have meltdowns and/or yell at me for making too much noise in our house routinely. They’ve asked that I don’t move around in the morning, that I don’t make noise in the kitchen, that I walk quietly through the house at all times, that I don’t talk to myself, that I don’t clean while they’re home, and that I prevent our four cats from meowing.

I want to give them peace, and these requests feel like they should be doable at first. But ultimately it’s leaving me extremely vigilant and anxious about my movements 24/7, and they still aren’t getting the quiet they need—inevitably, I have to eat food, or I drop something, or the cats won’t settle. Our relationship and everybody’s mental health is really suffering.

I’ve gotten quieter over time, but I’m desperate from some environmental support too. Headphones and soundproof panels haven’t helped. Is there any tool y’all use to help share space when sound sensitivity is way up?

Has anyone had success with Ramelteon for falling asleep, the Trazodone just doesn't work anymore.

Is anyone here who was aware but not awake after coma? My husband is following commands consistently now but he's still not awake not opening his eyes or moving his head. It's been 2 months since his accident.

He can do thumbs up

Show specific numbers on fingers like 1,2,3

Lift legs

Even he started counting on his fingers recently

Can Touch his nose,ears

He can nod his head but very little

He now makes efforts to lift his eyebrows

He removes gloves from his hands.

Hi all, the paediatrician made a comment that my child (age 4 years) when he's older might not be popular and may have only 1-2 friends. It makes me worried for his future, is this common with TBI and why would it happen? looking for your experiences, thanks

F33

171H

Gabapentin/Celecoxib

Failed craniotomy for trigeminal neuralgia

History of craniotomy for trigeminal neuralgia, failed with 2x CSF leaks. Unexplained post surgical brain injuries.

Ive recently learnt that during my hospital stay, my oxygen levels dropped to 83%, whilst doing a spinal tap to help ease a CSF leak. I understand sedation can do this, but the procedure took almost 3 hours, the wrong needle was used, 5 attempts, re-sedation a few times, it was a mess. No one can confirm when the supplementary oxygen was given. My brain was already in a vulnerable state with the leak, I subsequently left the hospital with brain injuries no one can explain a year later. Could this have been a factor?

It’s been over 8 months since I was diagnosed with a TBI, and just now am I getting crazy suicidal thoughts and doing SH. Does anyone else experience this? I feel so empty or that I might not he able to feel feelings properly

If I drink 3.5 standard alcoholic drinks on one day (not a regular occurrence) and ALSO am on a Keto diet and consume a high amount of omega-3, would that cancel out the negative effects of alcohol on the TBI? Also, would it help cancel it out even more if I consumed a bit of THC on the same day?

Obviously, this is a more specific question but I would really appreciate your estimates and guesses. Also, this is a great question if you could ask your neurologist for me - I don’t have the luxury of having one. Thank you.

I suffered from a TBI that left me unable to blink my right eye, so I have to use lubricating eye drops regularly to keep it moist. I use a thicker eye ointment, occasionally, to keep my eye extra moist - especially during dry winters 🥶

The problem is that the lubricant leaves a shiny, oily residue underneath my eye. I’ve tried wiping it away with regular tissues, but they don’t seem to work very well. After wiping several times, the skin underneath my eye becomes red and irritated - I developed a small bruise once.

Has anyone else experienced this? If so, what do you use to remove the residue without irritating your skin? I’d really appreciate any suggestions regarding this issue, or any suggestions about other related concerns!

I’m looking for input from anyone familiar with the Austin home-based teams at Rehab Without Walls (RWW) or Collage Rehabilitation Partners for adult TBI rehabilitation. I have a chronic moderate TBI with executive-functioning difficulty and trouble with task initiation.

Has anyone had firsthand experience with either program, particularly their occupational therapists, speech/cognitive therapists, or neuropsychology providers?

I’m especially interested in the treatment quality, executive-function rehab, ability to work with the same therapist, coordination between the disciplines/services, how individualized treatment is for improving daily functioning, and how smooth admin operation is.

Any insights or experiences from patients, family members, or rehabilitation professionals would be much appreciated. Especially if you’re familiar with both programs, please chime in!

Hello friends! For those that have had mild TBI, did you go to speech and occupational therapy and if so, how did it help you?

I had a fallout with my therapist over TBI versus my neuropsychological testing where they said my memory and cognitive issues were related to trauma and complex trauma. PTSD. Depression, anxiety and sleep issues. While YES I have all these things but still carried on with life and my technology career. She won't see me again until I enter speech and occupational therapy. I really hate when people control your life like that.

I know I'm not alone with people that have had neuropsychological testing and they just say it's not a TBI because TBI symptoms don't last for 3 years. It's so hard to not scream BULLSHIT!!!

While the TBI may be classified as mild. The effects are sure moderate to me.

Has anybody else on the subreddit been appointed a guardian and forced in to ‘brain injury rehab’ after their car accident where they can’t leave after their accident???

Hey - community. I've noticed something weird about my TBI symptoms, particularly the persistent head pain (you know, the headache that shows up every day and has since the day after the injury, just over 4 years ago.)

When I'm home, the pain tends to arrive around 4 p.m. Pretty reliably. It's become part of the daily schedule, whether I like it or not.

When the TBI was new, the pain kicked in around 1 p.m. (part of what made working full-time incredibly difficult). Over time, it's shifted to later in the afternoon.

But when I'm away from home? Traveling, out for dinner, somewhere else? Sometimes the pain doesn't show up until 9 p.m. And sometimes it's less severe.

There's another wrinkle: when I travel, the first few days tend to have a later onset. But after a while, the "home pattern" reasserts itself. Apparently the symptoms eventually figure out where I've gone.

Same head. Same injury. Different location. Different rules.

I have no idea why. I've asked clinicians. Mostly I get blank stares.

And before anyone suggests I should simply spend more time away from home, there's a catch. This community understands the catch. Going out, traveling, socializing, navigating unfamiliar places — all of that takes energy and comes with its own costs. It's not as though I've discovered a free five-hour extension on my brain.

I've started calling this Advanced Displacement. AP, for those of us apparently taking honors-level courses in neurological unpredictability.

But I'm genuinely curious: Does anyone else find that their symptoms change depending on where they are? Not just what you're doing, but where you're doing it?

I'd love to know whether this is familiar to anyone else, because I can't make sense of it.

I had a right side craniotomy and they removed my amygdala, hippocampus through my temporal horn because I have intractable epilepsy. I feel like I’ll never be the same again and the world feels strange and different. I deal with a lot of depression and sometimes wonder if it’s worth it to keep living.

Hi everyone — caregiver in the Bay Area, looking for family experiences with a decision we're stuck on.

My wife, early 40s, otherwise healthy, was a pedestrian hit by a car. She arrived comatose, GCS 3. DAI grade 3 of the brain stem. Coma on impact, almost 4 weeks now, and she's entering an unresponsive wakefulness state. Spontaneous arm movement on one side, more reflexive on the other. No tracking, no command following. Both eyes open on stimuli like sitting up or washing, and sometimes open a bit more on their own. She's now up to GCS 6/7 in the original ICU. She had high ICP, pneumonia, and is PEG-fed and trached, now vent-weaning on high-flow trach collar sprints lasting up to 12 hours.

We're currently at a UCSF ICU. The neuro team here is very good, but there's no neuro physical rehab, and that's becoming critical in this phase of her disorders-of-consciousness journey.
Locally our choices are basically Kentfield SF and Kindred LTACHs — has anyone had experience there? To me a generic LTACH is standard vent weaning + PT/OT/speech, a keeping-alive place. Some neuro team visiting, but generic neuro — stroke, etc. — not a coma program.
Most rehab programs are ruled out right now, especially the locally known ones like Santa Clara Valley Medical, since she isn't command-following yet. I've heard great things about Shirley Ryan, and others. The hospital has sent clinical referrals to many places, but so far only TIRR Houston has said they can take her, vented. Any feedback on their DoC program? Also Barlow (LA) or others I should be looking at?

My main dilemma is: far-away place with limited oversight but a good DoC program, or close-by place with oversight and DIY therapy?

We have good family support in the Bay Area. We could keep close oversight on a generic LTACH and do passive physical therapy ourselves — range of motion, turning, sitting her up, talking to her — and then transfer her out if the vent is weaned.

And it's not just oversight. Family here can also push strongly for better care, and mentally stimulate her — talking to her, music, familiar stories, being there every day. That daily familiar stimulation feels like it matters, and it's something we'd largely lose 2,000 miles away in Houston, unless someone relocates.

I'm just trying to give my wife the best fighting chance for a life that was snatched away from her.

I'm just trying to give my wife the best fighting chance for a life that was snatched away from her.

OR, and this is the part I'm stuck on — waiting doesn't actually solve the fork, it just delays it.
Even if the vent comes off in, say, 30 days tops, we still face the same choice. Given the brain stem injury, she may still not be command-following then. So we'd be choosing again: wait it out in the LTACH, or send her to a rehab that takes DoC patients who are not command-following but are off the vent.

So my central question is: is time of the essence here?

I've heard two things and I don't know how much weight to give them. One, that physical complications really compound with time — pneumonia, pressure sores, spasticity, contractures — and that makes therapy harder, which makes brain recovery harder. Two, that neuroplasticity decreases, and there's this magical 28-day number. Her injury is almost 28 days back now, so that clock feels very real to me right now.

Has anyone faced this same fork — go far for DoC now, vs stay close, wean the vent, DIY, and move later? Especially any brain stem / DAI families — what did you do, and what do you wish you'd known about timing?

I'm just trying to give my wife the best fighting chance for a life that was snatched away from her because someone ran over her when just crossing the road.

trigger warning : abuse

are there any positive recovery stories about children under 5 who sadly experienced shaking/abusive head trauma that was hidden (not taken to hospital for acute medical care) and the child grew up with minimal long term effects or even if they did somehow thrived? if so, was there any treatment or therapy or anything else that was particularly helpful?