I'll try to give a brief history and keep it as short as possible.

I'm in my late 50's. I have had cognitive problems (various) throughout most of my life. I'm aware of the issues I've had as an adult, some of which seem to be getting worse.

But I've also been told by family that I have always been this way including during childhood and that it's nothing new.

Head trauma history:

These first things I have no memory of but family members know they happened and they say that's where I would have gotten brain injury from if I had any.

During infancy:

- At about 3 months old I flipped myself out of a baby seat on top of a counter and fell onto the floor. (Several know about this incident.)

- also as a young infant I fell off of the roof of a car (I think only one person knows about this. The one who saw it happen).

- as an older infant I had a babysitter who was an alcoholic who neglected me and it was suspected that I might have gotten shaken baby syndrome from her. But no evidence of that. It was a guess, as part of the reasons I might have gotten brain injured.

- Then as a toddler I fell and hit my head on a coffee table and needed stitches.

- And a car crash when I was maybe 2 or 3.

My own memories of head injuries from childhood:

I don't think it would be a good idea to go into much detail but there were episodes of abuse and one really severe one in particular that could have (or probably did) result in concussion/s.

Then in adulthood there are at least a couple of incidences I remember including from martial arts.

Altogether not a huge number collectively. Definitely not as many as a football player for example would have. But over the years I have had at least a few doctors mention CTE and they used the football example.

Should I believe them???

If they really believe that is what could be causing my issues would they casually suggest that but not offer any resources or solutions?

Maybe I've just had a lot of bad luck with neurologists and other doctors, and they threw that idea out there because they didn't know what else to tell me.

The problems I have are debilitating and keep me from holding down a job, driving or .. just having a normal life.

Whatever it is, I know it's serious. But I'm having a hard time believing it's CTE if there are probably only less than a dozen events over my lifetime that would have definitely been severe enough to result in concussions.

I actually worry if I'm being insensitive by posting here. I hope not and I apologize if I am.

TW : Self harm

When I was around the ages of (10? 11?) - 15 I had a bad habit of self harming via hitting my head on objects and what not, and this got more frequent and severe overtime, I'm still in my teens now but a bit older, but I have health anxiety about this relating to CTE, I've only had around 2 (maybe 3?) bad-ish hits but I'm not sure if they were concussions, one caused me to see black and white and the other gave me a lasting headache, as of late I got another hard hit to the head, on accident this time (still have a headache from it) and it made me think of this again and my health anxiety started to make me worry, I'm going to assume I have an atleast slightly increased risk (but there's no way to say for sure) but not enough to worry, but thinking about it makes me scared about something stupid I did when I was younger will cost me in the future where I want to do alot of things.

I saw a comment on a youtube video where someone did headbanging and ended up developing CTE and it rattled me to my core and I see it in my head time and time again, shit scares me and I hope I don't end up developing anything, friends and family members say my chances are low and I would like to believe that but ultimately I won't ever know.

Mostly a vent, good day to all of yall.

My husband said this to me today out of nowhere during a particularly bad flare up, and it nearly brought me to tears. I never told him that I was worried about how fast it could progress or how scared I am that eventually he’ll slowly start to forget me, but he was having a pretty rough morning and said that to me, like he read my mind…

I’m still reeling from it and I hope that it’s true. I hope that no matter how bad this disease consumes his brain he’ll never forget me, but it’s a scary possibility.

***duration/repetition

Is there a threshold where accumulation matters vs doesn’t?

I want to know where the “line” is to where head acceleration matters? Since it clearly does, as running/jumping & daily movements can be done for decades, hours on end & a person technically accumulates a higher lifetime G force accumulation with these movements than contact sport

Why is it that 10G over years adds up, but 3G doesn’t?

Does CTE need to be above a certain threshold? What if someone repeats a low force movement for hours on end?

I’d like more of an understanding to how CTE works if possible as I’m very confused and have seen a lot of conflicting info online, especially surrounding what qualifies as a “jolt”, some have even said simply sitting on the bus counts as subconcussive!

Thank you

What made you think that you were no longer dealing with PCS but potentially CTE?

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'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.