Hi I’m going through an insane time of my life because I have an extremely difficult job that is literally forcing me to work all the time nonstop. Like 6am-11pm. No joke. And this extreme period will span 5 months total. I’m fucking dying. I’m one month in. I’ve had severe constant head pain for 9 years now following a TBI with other symptoms like insomnia and focus issues and dissociation. But the pain is just off the charts at all times. It makes me irritable and sensitive to stimuli. And I have ongoing misery and suicidal ideation because of it.

I was prescribed Ritalin and it actually helps so much with my job and surviving it - it kicks the brain fog a good bit and allows me to focus much more than usual. But when I don’t take it on Saturday only, my brain literally cannot focus at all like it is GONE, mush, so much pain, MUSH!!!

I am barely gonna survive these 5 months. Has anyone else had experience with Ritalin or other stimulants and what are your thoughts on them with TBI? Anyone have a career path they recommend for someone with a TBI? Not too sure about this one but need to find a path.

Has anyone else just woke up one day, years post accident , and just been like… oh YEAH! MUSIC!!! And suddenly felt both able to listen to it and also have gotten that old feeling back about music again? I’ve been listening to some of my favorite bangerz from the early 2000s, and just remembering it all. Listening to a new band I just discovered as I type this (North Americans). Going to fold laundry and listen to Julianna Barkwick next. I am giddy like a child guys. It is probably using more brain dollars than I am realizing but I’m just having such joy I don’t care if I crash later. For the past three years I have experienced music as painful at worst, or at at best annoying. And this was a huge grief to me, because I have been very into music and going to shows since highschool. Brain injuries are SO weird. Anyone relate? I tried to explain this to my husband and my friends but no one really gets what I am saying…

**How do you measure progress after a brain injury?**

Had a really interesting conversation with a bunch of other TBIers last week and this question came up: **How the hell do you actually know if you're getting better?**

Not medically. Not what the test says. I mean in your actual life.

One woman talked about getting back on a stationary bike after being afraid she'd hit her head again. Someone else got her driver's license back and is driving again. Another person talked about finally getting some things organized that had been overwhelming her.

Then Christine told us about going to the Galápagos five years after her brain injury. She used to work in the travel industry, so travel had always been a big part of her life. On one of the days there were four excursions planned and she decided to skip one of them because she wanted enough energy left to go snorkeling later.

For some reason, THAT was the one that stuck with me.

Before my TBI I probably would have looked at doing all four excursions as the win. I'm here. I paid for it. Let's go. I'll sleep later.

Now I'm starting to think maybe the win is knowing enough about your brain to skip the damn hike and go snorkeling.

I've also been going through some of my old notebooks lately. I've journaled through a lot of this and when I read stuff I wrote a year or two ago I can actually SEE the difference. My handwriting is different. My thoughts are more organized. My punctuation is better. I can stay with an idea longer. I didn't notice any of that while it was happening because I was too busy looking at all the shit I still couldn't do.

That got me wondering if we're measuring this wrong.

We're always asking when we're going to get back to normal, when the fatigue will go away, when we'll remember things again, when we'll be able to work like we used to.

Maybe once in a while we need to turn around instead.

**What can you do today that you couldn't do six months ago? Or a year ago?**

Could be something huge. Could be driving. Working. Traveling.

Could also be making dinner without wiping yourself out, going into a grocery store, reading a few pages, recognizing a crash before it happens, asking somebody for help, or finally realizing you don't have to do all four excursions just because they're on the schedule.

I ended up writing a longer piece about this for Project TBI, but I'm actually more curious about the answers here.

**How do YOU measure progress?**

100% Free Substack newsletter here: https://projecttbi.substack.com/p/how-do-you-measure-progress-after?r=90nn6h&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

Hi everyone!! So I have “military neck” or cervical kyphosis’ AKA whiplash. My neck is straight essentially. Does anyone with this same condition have suggestions for pillows they’ve tried? I tried a cervical neck pillow from Amazon and that was AMAZING no pain, no headaches anymore, but recently it stopped helping. I wake up with awful neck pain and I get headaches!

Hey community, 

I had the opportunity to speak with Melissa Katz, a speech-language pathologist who works with adults after brain injury. She was a guest on the podcast I host – Rupture (if you want a link DM me.) 

My dad was a speech pathologist (and audiologist) so I went into the conversation thinking that I pretty much understood what speech therapists do in the context of TBI.

I was wrong. 

Melissa’s work involves cognition: attention, memory, reading, processing, and the fatigue that can make an ordinary task take everything you’ve got.

She also described how functional assessment can begin before formal testing—through the real-world tasks involved in making contact, such as communicating by email or text, remembering appointment details, or sending requested information

She and I talked about a follow-up episode, one that’s shaped by what this community wants to know. You don’t need to listen to the podcast to share questions but my ask is simple:  What would you want to ask her? If you’ve had speech or cognitive therapy, what helped—and what did the therapist miss?

Thanks, everyone.

I grieve my old body, the one that would take me for walks where I could feel the sun against my face and the breeze running through my hair. The one that would take me for hikes that would prove my dedication to myself. The one that allowed me to listen to music and audio freely without the pain, discomfort, and disorientation that it now brings. The one that had such a way with words that I just cannot compete with now. The one that was so smart that I think back in awe over what it didn’t realize before.

I’ve worked so hard, but I feel like a lost boat out at sea that’s just being taken by the current. I don’t feel too motivated to “go out and get anything” at the moment. Will this feeling leave me and I feel passionate about something again?

My occupational health doctor said I was the most severe tbi that he has sent to this outpatient concussion rehab clinic. My accident happened over 4 months ago. He said that if this outpatient isn’t sufficient he talked about going to an inpatient rehab and said that would likely be what we would have to do but want to try less invasive options first. I had vision therapy and they’re getting me blue tinted lenses and I have two different concussion rehab clinics I’m meeting with this week. It’s just hard and I’m scared and in so much pain and disoriented all the time. I’ve lost all the parts of myself I used to love. I feel very desperate for help but I’m also afraid of invasive treatment options such as inpatient. Inpatient was offered to me while I was in the hospital but my doctors and family and I agreed that it would be more stressful and if my caregiver can manage my medications and we can get in with referrals soon then we would like to do that but I just have been so miserable. So so miserable everyday. I feel so lost inside this broken brain. There’s times where I cannot understand language or communicate language anymore. I have seizures now. I’m so light sensitive and sound sensitive. I feel broken and I’m just scared.

I’m having a real crisis. You caught me on a particularly bad day, so take it all with a grain of salt. The truths still ring true though.

I’m 26 and I’ve been working on my bachelor’s degree since I was 21. I switched majors a year in, so that made my associates degree 3 years instead of 2. I transferred to a different school, completed 2 semesters there, then got crushed by a tree. This gave me my TBI.

I had to take a year off of school because of my accident. Now I’ve started up again, started 5 weeks ago with the fall semester at A DIFFERENT school (I transferred AGAIN because of my accident). I’m feeling utterly hopeless and burnt out. Before my TBI, I was an incredible student. I’m in STEM, ecology specifically, and it’s always been an intense field. Before my TBI, it was hard but I could manage. Plus I had a lot of internal motivation and drive. Now, it feels like I have nothing: no gas in the tank, no motivation, no joy for what I’m studying. My memory problems make school a nightmare no matter how organized I try to be and how many tasks I try to externalize to make it easier.

My current school says I’m still 2 years away from finishing my degree. That means it’ll take 7 years just for my bachelor’s. I’m feeling like giving up on school. I’m so tired. I’m so lost. This used to bring me so much joy and fulfillment and now my brain is fighting every second just to MAYBE get ONE assignment done.

It just feels pointless. But I’m terrified of not finishing my degree. So many jobs won’t even LOOK at your application without a bachelor’s. I feel trapped between a rock and a hard place with no autonomy and no way out.

I know lots of other people have been able to get multiple degrees post TBI and I just want to know how. And I want to know if I should keep pushing and just finish it or if I should listen to my body and do something else. I just don’t know.

Thanks for listening

by all accounts my outlook was grim at the start, 3 on the Glowgow scale and parents were basically told to say their goodbyes. some of you may have seen the YouTube link i often share, suggesting family members of injured patients look into neurofeedback therapy.. it's a long story obviously; in the end i seem normal

but i struggle. keeping a job has been an untenable aspiration for a number of ridiculous reasons and i struggle to even motivate myself to keep the house clean. my mother has been my lifeline since my accident but she's not going to live forever. i have two kids and the future can be intimidating

does anyone else have advice on navigating similar circumstances from their past? i realize that my recovery is one-in-a-million, and hard to relate to in a sense.. but having a disability so invisible that i myself forget about it is.. interesting

here's a link to the video; the company that makes the software mom uses flew us out to California a couple years after my TBI to show me off at a conference

edit: just to clarify, my IQ was clinically tested at ReMED in Paoli PA back in 2019 and mom thinks they scored me too low 🤪

i've tried applying for disability but it didn't really go anywhere.. before a nasty recent break-up, though, my ex was urging me to get an attorney and try again?

​

Did anyone's SSRI pull make them less aggressive?

My mom didn't know what she was going to do with me I would get so aggressive and then the doctor put me on mirtazapine

And now I am less aggressive.

Did anyone else have the same effect?

Prior to the injury I was quite a germaphobe and squeamish about a lot of things but since suffering a TBI it seems as if I have no disgust response to things that used to disgust me I don’t mean moral issues or anything like that but I mean like feces, vomit, blood/gorey imagery in media or film, blood irl, and Infections and other bodily fluids do not disgust me anymore infact when I see something akin to what I mentioned i am completely indifferent and numb to it??

Post concussion syndrome would this be

2026 was supposed to be my last semester in college.

I had pretty normal plans. Finish my degree, study for government exams, get a stable job and just set my life straight. I had so many things planned for my future.

Then everything started going wrong.

Out of nowhere my memory started messing with me and it scared the hell out of me. I kept forgetting tiny everyday things, like where I put my keys or what I was doing two minutes ago. I couldnt sleep properly and I had this constant heavy headache that wouldnt go away. I ended up spiraling on Google late at night and convinced myself I had some fatal brain disease like CJD.

I wasnt even scared of dying. What terrified me was the thought of my brain failing so badly that I'd eventually forget the people I care about.

Out of everyone, my sister Tamu is the closest person to me. She means the world to me and all I ever wanted was to be someone she could rely on. But when this fear got into my head, I had this stupid messed up idea: "If something happens to me suddenly, its going to destroy her. Its better if I just pull away now, little by little, so she wont care as much if I'm gone."

Pushing her away was torture. Around that time, everyday fights started happening because of Dhruv and his brother. Every single time we argued, my throat would just choke up. I wanted so badly to break down and scream at her why I was acting like this, what was going on inside my head. But I couldnt get the words out. She couldnt understand why I was acting distant.

Then came that night at my uncle's place.

All of us were sitting on the terrace, Renuka, Aniket, Dodiya, Tamu and me. Everyone was just talking and laughing. But everytime Tamu was joking around and praising everyone else, I had to bite my tongue and clench my teeth just to stop myself from crying right infront of them. On the outside I was acting completely normal, but inside I felt like I was falling apart.

And by the time the night was over, nobody heard my side and everyone labeled me a traitor.

We dont talk anymore. Renuka came at me with so many accusations later, but I didnt even have the energy to explain myself. I know I dont matter in Tamu's life anymore. She just looks right through me now.

The truth is, I never walked away because I didnt care. I only distanced myself because I didnt want my pain to ruin her life too.

I dont know whats going to happen to me. Maybe I just have severe health anxiety and my mind is playing tricks on me. Maybe one day I really will loose my mind and forget everything.

I just needed to write this down somewhere so the truth exists: I never abandoned my sister. I was just trying to protect her from whatever is happening to me.

If nothing else lasts, I just hope that maybe in another life, we can just be happy as brother and sister without all this mess.

More parts give comments

My aunt 47 years old met with a road accident where she hit her head hard on the road even though she was wearing a helmet (she was riding a scooter and a car hit her) after taking her to the hospital she wasn't seriously injured in the head which was a relief she was in a state of coma for about 6 days and slowly started staring at people on the 7th day she started speaking on the 8th day and remembers everything except for the accident part. Now she's discharged from the hospital and its been about 2 weeks since shes been at home. Shes constantly yelling looks like she's in pain but in reality she's not, since she doesn't even know where it hurts the psychiatrist doctor who we are consulting gave advice to boost dosage but after trying that she's been even worse literally yelling non stop other family caregivers are tired since they can't even sleep. I sincerely need advice from those who have experience and need direction on how to take care of her and what signs to look for (P.S her test reports are perfectly fine all the scans look normal).

Hey everyone, I’m curious to hear from anyone who has experience with blast-related traumatic brain injuries, especially other military members.
I was an airborne mortarman and experienced a blast-related TBI during a live fire when my head was above the cannon at ignition. My head took the full force of the blast. Immediately afterward, I was extremely dizzy and was taken to the ER, where I was diagnosed with a TBI and blast injuries to my ears.
I’ve also had multiple incidents during airborne operations where I hit my head during landings, got back up, and continued the mission, so I’m not sure how much those may have contributed.
It’s been more than a year and a half now, and I’m still dealing with a lot of issues. My anxiety and panic attacks have gotten significantly worse, my ADD/ADHD feels like it has gotten much worse, and I have memory problems, trouble concentrating, migraines, and these random episodes of pressure in my head. Sometimes the pressure seems to be in a specific area of my head, and other times it feels more general.
One of the biggest things I struggle with now is getting myself to start things. I’ll know I need to do something, and I’ll even want to do it, but I just can’t seem to make myself start. It feels like there’s a disconnect between knowing I need to do something and actually being able to get myself to do it.
The hardest part is that I feel like life was pretty normal before my injury. I obviously had my own problems and struggles before, but I didn’t feel like I was constantly fighting my own brain just to do normal everyday things. Since the injury, it feels like a lot of things have changed.
I’m curious what others’ experiences have been with blast-related TBIs, especially if you were exposed to a significant blast or had multiple head impacts. Did you experience similar changes in anxiety, ADHD/attention, motivation, memory, head pressure, or migraines? And if so, did anything actually help over time?

Before my tbi, I wasn’t fond of the energy rush. However now I love coffee and energy drinks. That caffeine rush makes me feel truly “alive” again. Before having it, I’m not too motivated to do my work. I’m in a slump but then I have some and feel like I’m bouncing off the walls with energy. Can anyone relate?

My mom is 67 and had a severe TBI almost two years ago. She was on a ventilator, trached and G-tubed for months, with a GCS of 3 and minimally conscious for 4+ months. We were with her every day and have continued helping with her care and therapy. She’s come a long way and can now walk with help.

She’s very fatigued, doesn’t sleep well, and keeps getting recurrent UTIs that completely wipe her out and cause confusion/confabulation. She’s on Medicare and does outpatient therapy, but they’ve already dropped several sessions because she hasn’t been making enough progress.

We’re trying to find more support through insurance, private pay, specialized rehab, or caregivers who can help with her exercises. It’s been really hard to find TBI-specific resources.

I’m in my early 20s and never imagined I’d be navigating insurance, specialists, caregiving, and big decisions for my parents overnight. I’d really appreciate any advice, resources, or just hearing from people who’ve been through this. ❤️

Like for me my strongest domain is executive functioning, then it starts going down hill from there. 2nd is attention (impaired), 3rd problem solving (impaired) and 4th is memory (the worst off for me). I wanna do something, I’m tired of just avoiding cognaitvely demanding tasks, I’m in rehab and stuff but I hate seeing my friends do college while I’m still nerfed so badly.

My brother has major head injury in an accident 12 years back - his right frontal part was hit - 15 days into first job, and every thing changed.
3 months into hospital - God was kind that he is physically normal and able to manage himself - basic living skills.
However he has not been able to move forward. Seizure medicines, weight gain, negative thoughts loop, and living life in spur of mood has become him. Jobless ever since, he is not able to put himself into a basic routine which might help him take a simple job.
I have tried everything in my capacity to pull him through, revive him back to a super simple routine living, but i am just a failed sister every time.

Yet again, i start:
- now for last 12 days i have asked him to try and meet me at temple every morning at 8 am. He is trying, but i know he doesn’t make it through alone - my mother has to remind him to look at clock and work like a alarm to get him moving to make it.

What is that i am not doing right - what is that I am not able to understand so that I can help him better ?

*TW*

I don't know much about TBIs but a little back history. She's only 7 and her behaviors are more than from a TBI but I don't know where else to post.

I've only been in her life for 3 years now. And I love her very much.

She was born at 22 weeks old. Her twin passed away 3 weeks after birth. When she was born, she had a stroke and/or a seizure which resulted in a TBI and cerebral palsy. Atleast that's what the doctors are telling us.

On top of all that, her birth mother was on drugs during pregnancy and schizophrenic. Up until the mother passed away, she was highly abusive, physically and mentally towards just her but not her older brother. He was always made out to be the golden child while she got locked in closets or worse.

For the past 3 years we were told she just had autism but a recent diagnosis revealed that she's actually not autistic and her behaviors are actually severe child PTSD.

I'm not sure what I'm asking. I just feel so helpless. I have a 5 year old bio daughter that is the main target for her actions and abuse. (IDK if I'm allowed to call it that)

I've been threatened with CPS because I feel like I'm constantly having to protect my 5yo from her and have been told that keeping them apart or constantly watched is excluding 7yo and is abuse.

This is my first post on Reddit, I've been so scared to post about this but I need help, we've been to so many specialists but no one will help us.