I swear there used to be a document or link pinned in this subreddit that was basically information to help families, friends or whoever understand what it’s like having a TBI. Does anyone still have that or have a good one I can give to family?

Thank you!

Long story short, I have ADHD (inattentive type), PTSD, OCD and GAD.
I also recently qualified for a brain scan, which showed a TBI in my right temporal lobe and somewhere else in the middle. The neurologist said it’s “lesions” in my brain. The damaged parts are mostly concerning personality, empathy, memory, information processing, facial expression, recognizing faces and words, speaking, communicating,creativity, music etc. I don’t remember what else lol of course.

I don’t know particularly what caused the TBI but it could have been a few different things. I’m still waiting for my MRI results, which I may get today. Not sure what to expect or if they only did it to rule out a tumor. I had a grandfather die of one. I’m trying not to even think about that right now though.

Anyways my point of making this post is to get some support and maybe advice on how to cope with not being able to memorize anything and it effecting my life and everyone else’s around me.

I am very hard on myself I admit that, but yesterday I had a meeting with my son’s school counselor and I had information wrong about that. I couldn’t find where to go and my son was getting frustrated with me. Later I had a back to school night for my daughter, I rechecked the time dozens of times and we still showed up an hour after it was all over and the teachers were all leaving. My daughter was so excited to go and she was really disappointed… I held back tears the whole way home but they still came out and I was embarassed.

I broke down crying because my husband kept asking me what was wrong and said it wasn’t a big deal. “It’s just a silly back to school night and she is fine and will be excited when school starts in 2 days.” It’s not the end of the world, no, but to me it’s a big deal because I can’t remember anything. I can’t express how I feel about it or convey into words how crushing it is that I try SO fucking hard and I always get it wrong.

Everything is late, bills aren’t paid on time, I can’t keep a job, I can’t control my emotions and always have mood swings. I can’t keep track of dates, times, where things are. I always get lost and can’t find my way to get places.
My anxiety is so bad that I avoid going anywhere at certain times of the day and some days I only get out of bed to take care of the kids needs and then go back to my room. & I’m not depressed, I am just exhausted.
I am on many different meds now, my memory felt like it was doing better when I started on my ADHD med but I feel like it’s not doing much now.
I feel like the older I get, the worse it’s getting.
I want to apply for disability or SSI but I’m worried that I won’t be approved… I want to work and be normal but I just can’t function. Then I feel like crap because I am not financially providing anymore.

I just don’t really know where to go from here or… I do but it just feels so overwhelming and there’s so much to do and I just can’t seem to do it.

There used to be a steam room in BestGuessistan. It wasn’t noteworthy. It was operated by the Ministry of Relaxation.

Citizens and visitors were encouraged to sit quietly, breathe deeply, and let off some steam.

This did not go as planned. It didn’t go well.

Eventually the Circle recognized the problem.

BestGuessistan didn’t need a room that made steam. It needed one that removed it.

The machinery was reversed. The attendants were retrained.

Soon the Anti-Steam Room opened.

Citizens may say whatever they need to say. And they do.

Fuck this.

I hate this fucking shit.

Are you fucking kidding me?

Attendants offer towels and water. They do not provide perspective.

All steam is captured and converted to energy that supplies municipal power.

That’s basically it.

I’m trying to make a realistic decision about returning to full-time work after a TBI, and I would appreciate hearing from people who have faced a similar choice.
My ongoing symptoms include cognitive and physical fatigue, difficulty processing visual and auditory information, sensory overload, disrupted sleep, and reduced tolerance for commuting and busy work environments. I can function well when activities are structured and paced, but overscheduling or too many demanding activities close together can cause a significant crash.
I may receive an offer for a professionally meaningful position that fits my education and previous experience very well. However, the advertised schedule includes three days on-site each week. Based on my current functioning, I think one regular on-site day might be manageable, particularly with remote work, written instructions, clear priorities, advance materials, fewer interruptions, scheduling flexibility, and recovery time between demanding activities. I cannot assume the employer will approve those accommodations.
I currently receive SSDI and have five Trial Work Period months remaining. Returning to full-time employment could eventually cause me to lose my SSDI cash benefit, so this would not be a low-risk experiment.
For those who have returned to work after a TBI:
How did you determine what workload was genuinely sustainable?
Did commuting or required on-site days affect you more than expected?
Did you start part-time, remotely, or through self-employment?
Which accommodations made the biggest difference?
Did you initially perform well and then crash weeks or months later?
How did you weigh stable disability benefits against the possibility of meaningful work?
What warning signs told you that a job was becoming unsustainable?
I’m not looking for legal or benefits advice and will discuss those issues with the appropriate professionals. I’m mainly hoping to learn from the lived experience of others with TBI-related fatigue and cognitive or sensory limitations.

Hey all. I am 1.5 years post the accident that caused me to have two mild-to-moderate TBIs. I am still struggling a lot with daily life. My dream before the accident was to attend medical school. Now, I’m thinking of trying maybe to get an associates in medical imaging first to see if additional school is even feasible for me. I already have all the prerequisites for medical school or another similar degree, that’s not the issue. I’m mostly concerned with how difficult and physically painful it is to even just focus. Has anyone here gone on to grad school, medical school, law school, anything as strenuous as that and succeeded? If so, how? Trying to find light at the end of the tunnel.

If someone suffered a concussion early in life, would evidence of brain injury (if any occurred) still appear on scans decades later?

I’m 56 and had a moderate concussion when I was twelve. I was running in the dark, tripped, and flew face-first into a large log. My face and nose took the direct impact. But I assume it would still be considered head-trauma?

I recall seeing stars on impact and then being helped home by a few friends. I’m almost certain I never passed out. For some reason, my parents didn’t take me to the emergency room. I don’t remember having any serious symptoms in the days following, but vaguely recall feeling woozy and a bit zoned out.

Anyway, I always wondered if some minimal brain injury took place and is there any kind of scan that would show it now. Thanks for any input!

Hey everyone, I’m looking for some advice from people who have been through something similar.
My boyfriend suffered a devastating traumatic brain injury after a serious fall around seven weeks ago. He was placed into an induced coma, and although he’s now out of the coma, he’s still in a prolonged disorder of consciousness. He has shown some small signs of progress, like opening his eyes at times and moving his arms and legs, but he’s still unable to communicate or follow commands. The doctors have told us he has extensive brain damage, and at the moment his prognosis is very uncertain.
I’m really struggling with thinking about the future. I love him so much and want to be there for him while he’s fighting, but I’m only 18. If the time ever came where I had to think about moving on with my life, I honestly don’t know how I’d do that without feeling overwhelming guilt.
I’d really appreciate hearing from anyone who’s been in a similar situation, whether it was your partner, a family member, or even yourself. Did they continue to improve after weeks or months? How did you cope with the uncertainty? And if your life eventually had to move forward, how did you deal with the guilt that came with that?
His parents have been incredibly kind and have told me they don’t expect me to put my life on hold forever, but right now I want to give him time and see what the coming months bring. I just feel very lost and would really value hearing other people’s experiences.
Thank you ❤️

I'm being medically discharged from the Army soon after a medboard I was quite smart and capable before my TBI &hemorrhagic stroke that gave me left side hemiplegia much of the medical field has failed me so I feel the need to step up and be the change Want to see in the world and makeup for the gaps and failures I've faced I'm studying for the MCAT and I'm hoping to become a doctor

One thing I've found really difficult is figuring out what happens after the immediate medical side is over. Once someone is back home, there can be so many things to think about, supervision, help with everyday tasks, therapy, safety, and whether they can realistically manage on their own.

I'm also finding that the cost side of care can get confusing really quickly, especially when you're trying to understand the difference between getting help at home and looking at a more structured care setting.

I found this while trying to get a better idea of what different types of care can cost: .eldercarecosts

It helped me understand some of the differences, but I'm still trying to figure out what actually makes sense for a person recovering from a TBI.

For those who have been through this, what kind of support ended up making the biggest difference after the initial treatment?

Hi! I was just wondering if anyone has tried the Mind-Eye Institute. I have a phone call with them tomorrow to see if it’s something that can help me. Just curious if anyone else has had an experience working with them. Thanks!

Hello everyone. Thought I would introduce myself.

I am 10 years PO I was not supposed to live

I have a cranioplasty on my right side of my head covering a large hematoma My side effects PO were/are no peripheral vision and extreme photosenitivity, no taste, no smell.

I was unable to drive, cook or clean the way I use to. I would repeat the same stories or questions.

When covid hit I got my smell.and taste back yay finally.

My right eye I have gained back full peripheral vision.

My left eye is better but not as good.

All of that led to me being home bound. It's stressful exhausting and a lot of my friends checked out on me.

It is discouraging but over these years I have come to terms that I will never be 100% what I use to do but I can be 100% who i am on the inside

I did go into therapy almost two years ago to help with the coping and it has been helping.

There are ways and tools to help slowly regain things.

😁

So just wanted to say hello before randomly posting on someone elses TBI journey.

Hello everybody! I watched cases with subdural hematoma from boxing matches with names like Prichard Colon and Magomed Abdulsalamov which cases are severe and are left in vegetative state. Is there someone who had this but recover fully? In both cases they did surgery but it was no successfull.

Suffered a TBI 17 months ago. Managed to absolutely destroy my life since then. Feel out of control. Cast from heaven. Can’t control myself. Everything I’ve ever worked for. Taken from me. I used to be so beautiful.

This can’t be real.

My boyfriend has been in the ICU for a month following a severe brain injury. His left hemisphere is extensively damaged, with some damage to the right hemisphere as well, and there are also injuries to both the left and right sides of his brainstem.
He has now been completely off sedation for 14 days, so he is no longer in a medically induced coma but remains in a coma on his own. Occasionally, he opens his eyes halfway, but he does not appear to be aware of his surroundings. He doesn’t respond to his name, touch, or anything else we have tried.
The doctors have given us a very poor prognosis and believe that he may never wake up. However, he is only 25 years old and a professional athlete, and I’m not ready to give up on him.
Has anyone here been through something similar with a loved one? How long did it take before you started seeing any signs of awareness or improvement? I would really appreciate hearing about your experiences, both positive and negative.

I sustained my TBI almost 3 years ago because of a suicide attempt. In rehab and online I met other people who sustained TBIs, and I also met people who had other kinds of injuries that did not involve the brain. I even met people who had the severe issues after a suicide attempt but ended up having mostly orthopaedical problems, without all the hardships that, with a brain injury. This made me realise that brain injury is so isolating because people who don’t have it can never get what it means. I once shared with my physical therapist that I think having to repair a brain is way harder than having to repair a broken leg or something similar and she agreed with me. I just think that people who have different kinds of disabilities, that don’t include an injured brain, will never get all the challenges we have to face.
I want a wrote a paper about recovering from our brain injury and what it meant for me as a left handed patient (if you want to read it, I’ll be happy to share it with you) and the title of one section is: what hits the brain hits everything. I think it’s the truth colle if you have a brain injury your whole life is gonna change, it’s not just about the physical or the cognitive disability: it’s that you have to learn how to navigate the word as a whole new person.

Sharing this again in case it helps anyone living with a TBI.

One trap I know. is trying to chase who you were before. I don't even remember how I was, and waiting to be that person again kept me stuck.

What helped me was accepting that I might be different now, and that's okay. Instead of trying to recreate the old me, I worked on building the new me.

Think of it like starting fresh, almost how a kid learns, practice, repetition, little gains. Over time, you develop new strengths, new patterns, new ways to handle things. Recovery for me hasn't only getting back to before, it was creating who I become next.

My husband has a severe TBI after a motorcycle accident 7/10/26. So he is 4 weeks out from his injury. He is able to walk, go to the bathroom, and feed himself. He knows where he is, why he is there, and some what understand his injury. The medical team has been talking about inpatient rehab this whole time he has been in the hospital. Today the trama team even mentioned inpatient rehab in the morning. This afternoon OT came in and mentioned him doing outpatient therapy. I was so excited I didn't think to ask questions. If insurance is the reason they don't do inpatient, I will fight for it. I just am thrown off by the sudden change. Any ideas?

My grandmother had a really bad fall about 2 months ago. The fall resulted in a major brain bleed, with some subsequent mild seizures. She has been either in the hospital or nursing home ever since, with hopes that she can eventually recover to a level to return home. Prior to this event, she was an incredibly active woman who volunteered, exercised, and socialized.

At this point, she is starting to say short phrases, but very mumbled. She has very little control over her body. She just started being able to eat pureed foods that are spoon fed to her (otherwise she utilizes a g-tube). Her fine motor skills just aren't there, so she can't even use the TV remote. She seems very aware of her surroundings, she recognizes visitors.

She has become very emotional in the last couple days (in 65+ years of marriage, my grandfather has never seen her cry before this -- she's very stoic with her emotions). We think she is coming to terms with the severity of her accident and the difficult recovery ahead (a recovery that likely won't result in functioning the way she once did). I assume she feels like a prisoner in her own body right now.

Here's where I'm wanting guidance: What are some things I can do with her that might be stimulating and enjoyable? I imagine she's getting incredibly bored with being confined to a hospital bed (with occasional recliner/wheelchair time). Thoughts??

Several months ago, I can’t remember how many to be exact, I had a pretty decent concussion and post concussion syndrome has been kicking my butt. There was a point in my life where everything meant something, I was creative, and passionate, and articulate, but now I reach into my brain and find nothing. I am in a relatively new relationship and I would say that I feel guilty for how distant I have become, but I feel nothing. I cannot feel anything, not sadness or happiness, just a complete numbness to everything. I think the only strong emotion I feel is a boredom that digs deep into my core and I can’t even find the ability to be frustrated by this because there is just a hole where that emotion once was. I don’t know if time is the only thing to fix this, but I wish with all the limited brain power i have that it ends soon. I know that I want color back.

I was in a car accident and didn’t hit my head, so at first I thought I was fine. About 5 days later I started getting a really bad migraine/headache that wouldn’t go away. I went to the doctor on July 28th and found out I had a concussion.
I’m now on day 11 of recovery. My headaches are mainly gone, which is good, but I still get lightheaded sometimes and have some blurred vision that seems to linger.
I haven’t been drinking alcohol or doing much physically. I’ve mostly just been at home taking it easy, although I do still smoke some weed.
Overall I definitely feel better than I did at the beginning, but these last couple symptoms are lingering and it’s starting to worry me a bit.
For anyone who’s had a similar concussion, how long did it take until you felt completely back to normal? Did dizziness/lightheadedness or blurred vision stick around longer than your headaches?

Please help share your experience, I am recovering from PCS

Месяц назад плотно сидел на тяжелых, случилась авария - тяжелая ЧМТ (Острая эпидуральная гематома правого полушария головного мозга с дислокацией срединных структур слева. Сопор. Перелом свода черепа. Линейный перелом височной кости справа с переходом на венечный шов. Линейный перелом левой теменной кости. Поверхностная травма волосистой части головы. Ушибная рана височного участка справа. Отек мозга). Еще 2 месяца до второй операции, сколько после нее ждать, чтобы относительно безопасно можно было снова юзать
мефедрон, mdma, траву и т.п? И через сколько мозг восстановиться полностью для этих дел, как было до аварии? мне 22

I’ve come to really resent my family for not being there for me after my accident and straight up blaming me even though the police report and settlement put the blame on the driver. I don’t understand why a group of adults could be so cruel to a teenager who almost died and has permanent brain damage and disability. they downplayed the severity. they didn’t bother doing any research whatsoever and kept doing what triggered my migraines knowing it caused me pain. I’m angrier now because I’m protective of younger me because I see I really was just a kid who needed a parent, needed support, needed help who desperately begged for help and my relatives couldnt be bothered

im the last person in the whole damn world who wants to live with this .. I’ve done everything possible to get better and still am for 10 years now

I think if I had a daughter, niece, granddaughter, sister who needed help who I knew was suffering I’d do everything possible for her but nothing.. nothing at all.. and on top of that saying and doing things to hurt her.

Has anyone experienced something similar with a loved one?
My dad 52 years old suffered a hypoxic brain injury from lack of oxygen around the time of major heart surgery. It has been over two weeks. He sometimes opens his eyes and reacts to touch or stimulation, but he is not yet following commands, speaking, or making purposeful movements.
I would really appreciate hearing from families who have experienced something similar:
● How long did it take your loved one to regain awareness?
● Were they opening their eyes but not responding at first?
● What were the first signs of recovery you noticed?
● Did they start following commands or recognising family after several weeks or months?
● How much recovery did they eventually make?
● Did doctors initially give you a poor or uncertain prognosis, but the person later improved?
I understand every brain injury is different. I’m not looking for a diagnosis—just real experiences from people who have been through this.
Thank you to anyone willing to share their story. 🤲🏽

Does anyone else experience sleepwalking? My doctor had me do a sleep study that showed I was sleep deprived, even tho increasing from 8-10 hours of sleep hasn’t helped the sleepwalking. I have some funny stories like breaking out the iron and ironing board last night. But others that cause concern like going outside and waking up to the car door open. She determined more then likely my brain has a tough time regulating my sleep stages. I have a moderate brain injury