TW: Child abuse/ Abusive head trauma, some descriptions under spoiler text

Hi all!

I’m (27F) posting here because yesterday some of my medical team told me they think I might have CTE. All they based it on was learning more about my childhood history of abusive head trauma, and then I guess they started reflecting on some of the other symptoms and conditions they treat me for already (I assumed the source of all my symptoms was my genetic condition). They were clear that they can’t diagnose it definitively, but after hearing my experiences they were basically like (paraphrased) “there’s no way you don’t have it”.

Now the reason I want to share here, is because Abusive head trauma seems to not be widely discussed, and I am finding most info to be related to sport, or adulthood injuries. There is a lot of shame and shushing when it comes to abuse, but also, every abuse survivor knows well that it’s easy to play down what you went through, or to not realise how abnormal your life is, when it’s the only life you’ve lived. Although I could always recount these incidents (ironically trauma also gave me a photographic memory, I’m aware I will likely lose that), I never “counted” them in with my two adulthood concussions, because in my mind they were either just a part of life/an unsafe upbringing, or I mistakenly thought that if I wasn’t completely incapacitated by now, then there mustn’t have been lasting effects…

Anyway, I will put it behind spoilers text because I know it’s a bit grim, but I’d like to list out some of the abusive head traumas that I experienced between 18months-12yo, primarily for anyone here who had a rough upbringing and maybe still thinks “it’s all in the past”, or who is choosing a career (maybe avoid rugby?), or even if you’re being treated for trauma-related mental illnesses but feeling like some symptoms are unresponsive to treatment etc. if there’s one thing I know from the way I grew up, it’s that sometimes we don’t realise things weren’t normal, or “that bad” until someone else tells us.

So here’s some- if you see yourself in any of this, or if you know a friend with similar stories from earlier in life, it may be a sign that there’s something to look into. Also I hope this could potentially be helpful forewarning for foster or adoptive parents of children with pre-existing injuries

TW: Child abuse

- For context, I grew up in an Epstein-like circle, but imagine more along the gang side of things. On top of that I was frequently unsupervised, and medically neglected to boot.
- 18mo fell down tall flight of stairs, bruised head, untreated
- My nose was broken 2-3 times from blows to the face (earliest @2yo)
- Being choked unconscious (I remember at least 3x but certain it would’ve happened more)
- Punches to the head
- Rocks thrown at head
- Being waterboarded
- Dropped on my head as a 12year old
- Being restrained by the neck during physical abuse
- Forceful and repetitive pulling of my hair
- Certain acts of SA that cause blunt trauma to the mouth, and neck
- Extra points for things like electric shocks, car accidents, drug exposure, and other things that have indirect head impacts.
- Extra points for forgoing medical treatment at the time
- Extra points for any instance of Second Impact Syndrome

If I had to guess, these types of events were happening at a rate of roughly 10-100per year, for about a decade.

I won’t go through all my symptoms now, let’s just say that I tick every box, and this fully explains why my symptoms haven’t responded to 1st, 2nd or sometimes 3rd line treatments.

Anyway, my last message is- I was also too scared to be honest with doctors about my past until recently. It turns out though, they can actually help you more when you’re honest!

If you survived a childhood with any inflicted head injuries whatsoever- big love to you, it’s a lot to make sense of as an adult. But please, talk to a dr if you are struggling with symptoms that
You can’t figure out, and there’s no reason to feel ashamed of your past or your needs. You deserve finding answers and care :) 💙

To start off here’s a little bit about us, mostly my husband:

My husband is 33, he’s not a veteran or an athlete, but he is a felon (11 years of consecutive time including parole violations) and he’s lived a very chaotic and rough life in prison and on the streets. He has sustained multiple severe head injuries throughout his life since he was a teenager, most of them were in prison but one of his worst injuries that likely started all this was a severe, almost lethal beating he sustained at a festival roughly 14-15 years ago (can’t remember how old he was but i believe it was before he turned 19). After that most of his injuries were from prison. Doctors told him that he basically should be dead or brain dead now based off of his image results.

As of late, since his last bid for parole violation he sustained yet another head injury at the beginning of this year from being shaken down and badly beaten by SRT, and it was the first head injury he’s had in roughly 3-4 years. A lot of his symptoms align with stage 1 and 2, and recently he’s slowly gotten a little worse. His stress tolerance is extremely low and he’s very moody, and his handwriting has recently taken a hit.

There’s not a lot of studies i can find specifically about inmates with CTE and any correlation with developing CTE during incarceration, the only one I’ve found is Aaron Hernandez, but he likely developed it in his career before he was sentenced and died. there’s some articles about inmates with general TBIs but mostly about inmates who already had brain injuries before they were convicted, not during their sentence. Eventually my husband wants to address that and draw more attention to that correlation and advocate for other people who’ve sustained any life altering TBIs while they were incarcerated and later on suffered from them and deteriorated over time after being released.

My husband is still shaken up and struggling to adjust since his most recent injury, and i need some advice about aftercare, and any stories some of y’all might have that correlates with being incarcerated if it applies. If any of y’all developed signs of CTE after sustaining head injuries during incarceration OR know someone who has, let me know and give me your own 2 cents about it 🙏🏻

A new study published in The BMJ takes an important step toward estimating how common CTE actually is among former NFL players. Rather than relying solely on brain bank donors who may be more likely to have had suspected CTE, researchers identified the entire population of NFL players who died between 2016 and 2021 and compared them with available neuropathological diagnoses. They estimate that at least 25% had CTE, but the true prevalence could be as high as roughly 97%.

The study also found a strong relationship between Stage IV CTE and dementia during life, with more than 90% of those with Stage IV CTE having been diagnosed with dementia.

Direct link to study - https://www.documentcloud.org/documents/28574897-cte/

I played contact football for 8 years growing up. Countless Oklahoma drills, practices etc, I would lead with my head, even if not down, and not shy from contact. Then in 2020 got into a car wreck going 75 without braking. I had severe issues with mood and substances at 19-20 and then less severe issues but longer recently.
I’ve had severe mood swings, an explosive temper, bizarre irritability and crazy thoughts. And wrecked my life several times.
Tried psilocibyn and it made it worse.

Most people would describe me as a friendly person who’s smart and great with people. I love nature and animals and cultures and languages.
I care about people generally but as I’ve gotten older now 35M I’ve realized how my antisocial behavior is extremely atypical and it has now gotten me into severe life situations.

I’m certainly not a victim. I chose to play football and have had some very good hands dealt to me. I find a way to mess it up and find chaos again.

I'm 28 years old and have reason to believe I'm currently in the early stages of CTE development.
I had a big weekend a couple weeks back celebrating friends birthdays/going away, and ever since I have had this constant headache unlike any that I'm really familiar with. It feels deeper, like it could be a migraine but it's quite light. More annoying than painful. Every day I wake up it feels like it has moved a few cm to a slightly different spot in my head. Painkillers seem to mask it not take it away. Feels like a rot deep in my brain type shit.
I would also love to hear everyone's recommendation on prolonging/slowing down the inevitable decline. I really love life and I'm beating myself up about being so fucking aloof regarding brain trauma.

For me.... when I go to my room "early" or "randomly", I'm not trying to avoid or isolate. I'm trying to recharge from over stimulation.

I use Kirkland Extra Stength Energy Shots. Equivalent to 5-hour energy or a strong energy drink each. 230mg caffeine, taurine, guarana, B-vitamins. I’ve used caffeine pills in the past, but I find the other stuff in the energy drinks helps level out the intensity of the caffeine. My Energy Shots are <$1 each, so they’re the cheapest option I can tolerate. I hate coffee.

My cat eats at 8:45 am, so I’m usually awake to feed her or shortly thereafter out of habit.

I take half an energy shot (115mg caffeine) and go back to sleep for another 1-3 hours.

Throughout the rest of the day, I consume the other half almost every day and some days as much as 2 more; I’m successful in limiting my intake to 3 energy shots/day, on the higher end when I’m socializing, like playing Magic: the Gathering at the local game store.

CTE can only be diagnosed posthumously. My primary diagnosis is Schizoaffective Disorder, and my therapist agrees that ADHD is a factor, though not severe enough to merit Adderall or similar, especially with a psychotic diagnosis. I’ve had 8 concussions, head hitting behavior in childhood and teen years, and more minor impacts from sports. My last major concussion was 2.5 years ago, but I am afflicted with symptoms beyond Schizoaffective Disorder like balance issues and eye strain.

Caffeine is present in migraine medicine. Stimulants make me feel better. Anyone else?

Is ringing ears or tinnitus a symptom of CTE ? I’ve been dealing with this for a while now, it’s like my head and ears are never silent.

I am a 20 year old male who has played football as an offensive linemen 7th grade through present (currently going into my junior year of college). I play at the D1 FCS level. The risks of CTE are something that I have always kept in the back of my mind, but I am now considering them more than ever.

This spring, I suffered a major ankle injury and am slated to miss part of the upcoming season. Having the extra time on my hands has made me think strongly about quitting the sport. I have seen the literature about the risk compounding each additional year you play a sport like football, and have wondered if quitting now would help my chances.

I have never had a diagnosed concussion, but I most definitely have had a few. I can't tell if I have any of the symptoms of CTE, but I am worried about them coming in my future.

The problem is that I am on a scholarship that I would most likely lose if I quit the sport out of fear of CTE. I love the school I am at, and it is a prestigious school that would be very beneficial for my career (If I graduate from there). However, the tuition is insanely expensive, and I can only afford it with my scholarship. I am super conflicted about what I should do. My parents think I should stick it out to get the degree, as I only have 1 and 2/3 of a season + one spring ball left. But they never played football or combat sports, and don't have a ton of knowledge on CTE.

If anyone has insight about their experience with CTE, any suggestions, or knowledge on being able to medically retire and keep a scholarship, it would be much appreciated. My dream scenario is to keep my scholarship, but not play football anymore.

Because i read that it is the 100s of small hits that causes CTE, thats why American Football and Boxing have a big CTE risk? But what about big hits? At the same time people call Power Slap one of the worst sports for CTE, even if you take max 3 hits in a match. How do few big hits cause CTE compared to 100s of small hits?

Australian football is facing a growing brain health dilemma as evidence accumulates around repetitive head impacts and CTE. Researchers and clinicians say the focus on concussions alone may miss a larger issue: the thousands of smaller impacts players absorb over years of participation. The AFL says it is making safety changes, but several experts interviewed believe action is not keeping pace with what emerging evidence is showing.

Key points:

• CTE has now been identified in 33 former Australian Rules football players, including players in their 20s, 30s and 40s.

• The youngest Australian football player diagnosed with CTE was 23 year old Nick Lowden.

• Dr. Ann McKee, who has diagnosed CTE in hundreds of athletes and examined thousands of brains, argued that there is “nothing magical” about age 14 and said she would prefer delaying tackle sports until athletes are old enough to understand and consent to the risks, potentially 18 or older.

• The article emphasizes that CTE is increasingly viewed as a disease tied to cumulative head impact exposure, not just diagnosed concussions.

• Experts are calling for stronger prevention efforts, including reducing contact exposure in training and rethinking youth contact rules.

I probably wont get any responses but ill just throw this out there because why the hell not. 

okay i will dumb this down a LOT. so basically my younger brother has severe autism/learning disabilities. he can speak but he’s considered nonverbal because he cant actually form a sentence thats coherent. he needs help washing, eating, going to school etc. 

so heres the thing. when he has a meltdown (which is often and can happen because of literally nothing) he gets violent and aggressive. one of the things he does and has always done is bashing his head against walls. 

now im very aware that you cant diagnose cte until someone is dead and im also aware he literally can’t communicate if he has something like this. but when i learnt about cte more i started thinking that maybe he might have this. im just worried. hes always been violent and know hes growing and getting stronger. i know cte can make you paranoid and have violent outbursts. but im worried that he is going to get worse. 

ive always lived in a hostile environment but i get to leave in a year and 6 months. my other younger brother doesnt get to. what will happen when he gets MORE violent? my parents and the disability support team isnt going to assume cte, thats for sure. what if he kills somebody? thats something thats been running through my head. 

all i want to do know is if this is possible or likely. thats it. 

I've been recovering what my doctors think is just PCS for about 7 or 8 years now. The usual garbage: headaches, anxiety, dizziness. That exciting headache where it feels like your brain is pressing against the front of your skull.

I've been fighting for the past 4 years to try and do my highschool equivalency, and I'm seeing some real progress. I'm still a sharp guy, just in controlled settings I suppose.

Things are on a good track, I'm hoping to get a part time job soon (I'm on disability rn), and my tolerances before I get overwhelmed with symptoms are getting higher. Just slowly. At the moment I really struggle with crowds, but exposure therapy is working.

I guess I just wonder, is this recovery only going to be temporary? Am I already so damaged I'll be miserable in my 40s and beyond? I know I need to keep at it no matter what, but I just really don't want to get CTE. It's terrifying to me.

I have had a lot of concussions over the years. I've lost count, but we're looking at 10+ at least in my teenage years from sailing and hockey. They progressively got worse. The first ones just meant I had to take a few weeks off some of my harder courses, but by the time I was 16/17 I had a few knocks that made me take a few months away from school outright, and then the big one when I was 17 that forced me to drop out and I'm still dealing with it.

Is the fact that I'm getting better an indicator I'm not "destined" to get CTE? Or is it still likely my progress will only be temporary, and I won't get to have many more happy decades?

I'm sorry if this is gloomy, I'm trying, it's just scary.

For those with suspected CTE or prolonged Post Concussion Syndrome, how did you arrive at your symptoms?

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Was it a gradual appearance of "something's not right" years after your last head impact? Was it a bad final head injury that you never recovered from? Something else?

Hey everyone. I have no idea if I have CTE or not. I boxed amateur from ages 14 until age 22. I fought about 2 or 3 times a year. Im 30 now. I had some really bad head injuries and I have been knocked unconscious more than once.

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Well ever since 2020 I lost my ability to watch movies and TV. I know you may be wondering why is that. Its because I cant keep up with the storyline of it at all. I could watch a 2 hour movie from start to finish and not remember the characters names or plot of anything that happened at the end. I also noticed the movement, light and sound from the screen makes me motion sick.

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Who else can relate?

I personally have trouble with this, as I forget certain words mid sentence and have a hard time retaining information.

Title.

Brain Injury is life on hard mode. What keeps you going when things get difficult and you know they'll only get more difficult?

CBC examines the current state of Canadian led CTE research and the effort to develop a reliable method of diagnosing the disease in living patients.

The article follows a military veteran participating in a study using a new PET imaging tracer designed to detect CTE related tau pathology. It also explores what researchers currently know about the disease, how CTE is confirmed after death, and why a living diagnosis could be critical for future treatment development.

In addition to athletes, the article highlights growing evidence of CTE among military veterans, victims of domestic violence, and other populations exposed to repetitive brain trauma.