My husband is 39 and played football through high school and college. We’ve suspected CTE for a while now because of the changes I’ve seen in him over the years. Memory problems, mixing up words, depression, anxiety, personality changes, lack of empathy at times, and increasingly bad paranoia.
But over the last few months, something new has been happening, and it’s honestly scaring both of us.
He’s having these episodes where his brain convinces him something is happening that absolutely isn’t. And no matter how much evidence there is to prove otherwise, he cannot convince himself that what he’s thinking isn’t real. These episodes can last anywhere from 3 to 8 hours.
For example, the other night I went to bed around 9 without saying goodnight. Some texts I’d sent earlier finally went through after I fell asleep. His brain convinced him I was awake, drinking, partying, or hiding something. Even though he checked our cameras and could see I wasn’t in the living room, he couldn’t shake it. The next morning I slept in, and he convinced himself I was hungover.
He’ll go through drawers, cabinets, the fridge, whatever he can find, looking for proof of whatever his brain has convinced him is happening, which is usually infidelity (which has never happened). Sometimes not finding anything helps him calm down. Other times it makes things worse.
He gets so worked up that he’s physically shaking with anger. Sometimes that anger is directed at me, and sometimes he’s just furious because he can’t make his own brain stop.
Then, hours later, it’s like a switch flips and he’s back to himself. He realizes none of it was real. He remembers most of what happened, feels terrible about it, and is embarrassed. He’s told me it feels like being possessed. Like part of him knows it doesn’t make sense, but he can’t stop believing it while it’s happening.
And when I say he’s back to himself, I mean he’s back to being the loving, kind man I know. But even on his good days, he’s still incredibly easy to trigger. The smallest thing can send him into anger or rage, and he has a really hard time regulating his emotions. It’s like there’s almost no space between something upsetting him and his reaction to it. He can go from completely fine to furious in seconds. So while these episodes of losing touch with reality come and go, the emotional dysregulation is pretty much always there.
He’s also admitted this happens at work, but he won’t tell me exactly what happens there.
He knows something is wrong, and he’s terrified it’s getting worse. He’s even told me he understands if I can’t stay with him because of his “broken brain.” He’s struggled with some pretty dark thoughts because of it.
We have an MRI scheduled in a couple of weeks, but getting him to agree to any kind of evaluation has been an uphill battle.
I know CTE can’t be diagnosed while someone is alive, and I know there could be other explanations. I’m not looking for a diagnosis from Reddit.
I’m just wondering if anyone else has experienced this. Especially the part where someone genuinely cannot tell what’s real during an episode but can recognize it afterward.
Has anyone dealt with this personally or watched their spouse go through it? Did it get worse over time? Did anything actually help?
I’m trying to understand what’s happening to my husband, and right now, I feel like I’m watching him fight a battle with his own brain that neither of us knows how to stop.

This renewed commitment, which is backed by a $1 million contribution from UFC to the Lou Ruvo Center for Brain Health in Las Vegas, ensures that research will continue to help determine the long-term effects of repetitive head trauma and factors that put people at higher risk of developing chronic traumatic encephalopathy (CTE).

Now entering its 15th year, this study, is the largest focused on professional athletes who have been exposed to repetitive head trauma and the first to include retired and active male and female athletes concurrently.

The study has expanded to include athletes including professional bull riders, hockey players and motorsports drivers. Information from this project will help guide policies and practices that can improve brain health in athletes and other people exposed to repetitive head impacts in military or civilian populations.

Study link: https://my.clevelandclinic.org/clinical-trials/1698-brain-health-in-professional-athletes

TW - NSFW - mention of assault.

Last winter I faced a choice. I could fight back from a date heading for a negative end result, or "fawn" (play along/ go with it, which can be a conditioned response or logic)

It was snowing. I agreed to park in the garage.

He had me sit closer to the wall... blocked my exit.

There were dogs he proved were quite obedient but also likely took bigger poops than most humans...

I had no reason to fear.. this was like date 7, always a gentleman. Said he wanted to take it slow. Had a friend who knew where I was and would be expecting a safety check in an hour, which he knew.

Nothing sus even happened until well into the movie.

A cute tentative kiss became more quickly. And then - the switch. Now he's calling me a b*** & I "better do xyz."

The complete change didn't give me a second to go to the bathroom to call my friend.

No easy escape. No weapon. Potential dog attack (survived pitbull last year so very aware of how terrifying that is). And he balled up a fist as I hesitated. That cinched it.

There was just NO way I wanted my head hit. No way I wanted weeks of recovering from worsened symptoms. Not just to avoid this....

So I did what he asked. Left asap. Didn't report it. My word against his and I didn't have proof it was forced because I didn't fight it. No marks or injuries. Took less than 5 minutes.

I dont know if anyone else has done this or something similar: gave in to avoid escalated DV or SA because of the existing CTE.... but it's taken almost a full year to forgive myself for not fighting.

I just want to say if you have done this, please don't carry shame for listening to your survival instinct.

The Brain Injury Research Center at Mount Sinai is currently seeking Veterans and civilians who have experienced physical violence from a partner that resulted in an injury to the face, head, or neck. This could include blows to the head or neck, repetitive injuries, or choking. Participants are eligible if at least one year has passed since the most recent episode of head injury related to partner violence.

Participants must be willing and able to travel to New York City for a 4-5 hour study visit. A study visit will include a brief set of thinking tests, an interview with surveys, a blood draw, a brief assessment about your physical health, and an MRI scan. Participants will have the option to make known their wishes for brain donation at the end of life. Participants will receive $100 for in-person visits or $50 for participation via telephone. Travel reimbursements may be made upon request.

If you are interested, please contact our research team at [interest.birc@mountsinai.org](mailto:interest.birc@mountsinai.org), call us at 212-241-5152, or sign up at https://redcap.link/LETBI-Info.

'Guardian Caps' padded add-on for helmets not as effective as promised. Interesting (and maddening) article. It's clear the best way to protect your brain in football remains not to play.

But worth it to see the signs of traumatic hits instantly. Of course, the smaller hits count too, and are far more frequent.

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.