I have a brain injury [video]
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Anyhow, yeah, sorry for my rambling. Be careful with your head and carpe diem and all that!
PS: Keep doing fun and challenging things as far as possible. I happened to dance 3 to 4 days a week before; am back to 1 to 2 days now except for Corona measures getting in the way these last years. Think that can help exercise your brain in many ways. Also working and speaking different languages etc.
*) E.g: Not being as good at board games as before; more forgetful, slower, struggling with words etc. Noticeably also especially in cases where I experience my what I call 'brain fatigue'. A really weird thing to get used to besides the usual physical and sleep types of fatigue. I think it used to be aligned with sleep but now I usually get this before I get that.
I had a slight brain injury in college, a concussion. Everyone was taking care of the urgent cases, so it took a while to realize that I was no longer tracking anything beyond five minutes at a time.
I almost remember a dream-like experience of sitting in the Emergency Room under observation: they made me sit upright, when I so desperately wanted to lie down and sleep. A good friend sat with me through all that and throughout the night, waking me up every half hour or so. Each time he did so, I would be experiencing the whole shock and fear all over again, asking the same exact questions. After some long hours of this, I "woke up" and started to have a continuous narrative.
I will never forget waking up, staring at the hospital ID tag on my wrist, with the date, May 27th... I could not believe it. I was missing six weeks. What the hell?
I had to sleep a lot that week. In the months that followed, a flash of memory would surface, like a fish jumping out of the pond: a fleeting, flash of silver. I would grab my pocket day planner calendar, and mark down the date that memory illuminated. And so over that summer, I got back almost everything except those final few days before the fall.
It was a year later that I got back the day, just an hour or so before the crash.
First responders said they saw that kind of thing all the time, with guys who had too many beers in them when they whacked themselves in the head. I hadn't had alcohol at the time, but it was college, I bet there was some chronic sleep deprivation in there.
Did I fully recover? I have no idea. It's me. My self.
(The following semester, I had a Philosophy of the Mind class, heavy stuff, Paul Churchland and Professor Searle.
I am actually somewhat thankful I have had this experience, for it is a visceral perspective I cannot imagine inducing on purpose, in a survivable way. Acid or peyote? I don't know. I never tried. Not interested. I've had my ride.)
I absolutely feel that good physical condition -- it was a relatively athletic phase for me -- contributed to the shape of my recovery. And the brain challenges of software and electrical engineering (and philosophy)...
I certainly feel way dumber now, and indeed I flunked half my classes that following semester. But I've had doctors administer IQ tests since, and have gotten the impression that that number didn't change very much.
A good friend of mine has had a life-altering stroke some months after a nearly fatal bicycle crash. His stamina and conditioning still sees him riding as much as 100 miles each weekend, but can no longer speak clearly or walk without some support.
My experience is by no means comparable to his, or to yours. It just drives home the tenuous nature of my experience of reality. It's not just a philosophy class.
However I have to say that you are lucky. I doubt the majority of employers would be so kind and accommodating nor would work colleagues be as supportive.
Stood up after looking through some stuff in a box on the floor, and hit the corner of a heavy mounted wooden shelf. Didn't knock me out; just hurt a lot. But a couple days later, I almost fell over, and I realized using the computer screen made me really dizzy and extra tired. My description of the symptoms to the doctor led him to assert that it did seem to be a mild concussion / traumatic brain injury (TBI).
To keep it brief... I had to take a good 9 days off work and completely away from screens. But by "luck" I was laid off barely a week later (and no it was not in any way tied to my concussion or reduced performance), and only went back 6 months later (small business, pandemic, yadda yadda). When I did, it took months before a day of work didn't leave me extremely fatigued. I discovered over time that I need computer screens to be higher refresh rate - 144Hz works well. And everything should use DC dimming. PWM dimming does not work for me. My phone is 90Hz, but I don't use it nearly as much and I hope to someday get a decent, affordable 144Hz one with DC dimming.
I think now about 16 months later, I still get can dizzy and fatigued from prolonged screen use.
Jesus I do something like that every other week. Now it all makes sense why I'm such a dumb ass.
Until it did. No guarantees, but it's possible everything can turn out okay. I have a whole new set of worries, but my noggin isn't one of them.
One day I realized that I am who I am; no A/B test can be done for my life with and without concussions. Causal inference can't be done by comparing experiences pre and post concussion. At most, it helps guide me as learn to deal with situations better - but not much more.
Still get tired, but fasting helps me stay productive.
Quite right. You don’t even need a concussion to have this quandary. Low blood sugar, lacking sleep, too much/little caffeine, stressful day, etc, all affect how I react but in all cases it was me albeit not at my best.
I had a couple of appointments with my neurologist. She saw me with and without opiates. The first time she saw me while I was being on opiates, she told me how much better I look and all that. If I told her that the difference between the two was opiates, I bet she would approve of its use in my case.
In any case, this is what works for me, and I have been through a lot of psychiatric medications without any success. Opiates are not really an issue at all. I get regular blood tests done, I get MRIs done and so forth... everything seems to be fine, otherwise I would not use it. Constipation is the only issue, but I take magnesium citrate for that.
I would like to add that I wish I did not have to depend on opiates or anything at all, I would rather prefer that, but this is what it is. I am happy I found something that works for me after so many unsuccessful attempts. I found it by accident, even.
Also, Tysabri is effective. https://en.wikipedia.org/wiki/Natalizumab
For now I take propolis, vitamin D, B vitamins (B1, B6, B12 especially), garlic oil, quercetin, and bromelain. I just ordered CBD oil and this will be my first time testing it. I hope it is going to work for my muscle spasticity. Additionally I ordered Ceylon cinnamon, because I read some studies with promising results. I might as well give it a try. Opiates do help tremendously, but they do not treat all of my other symptoms.
[1] First search results: "There's no cure for demyelinating conditions, but new myelin growth can occur in areas of damage".
Hoping you get better.
The feeling is hard to articulate, but I no longer connect to my feelings or thoughts in the ways I had been accustomed to.
My new behaviors and patterns are somewhat destructive to the life I was building prior to my “break,” and it’s incredibly maddening and depressing trying to balance “good for new me” and “good for the life old me built and the people he loved.”
It goes way beyond not simply enjoying the things I used to enjoy any more.
Same here. I had the mix of a heavy burnout and a broke up a couple of years ago and I'm still recovering.
It's curious how I totally had the same kind of "logarithmic" recovery that some other people wrote in other comments here. It might be how the brain reacts to that.
I’m on antipsychotics and no one is going to let me go off them, including me.
I’m never, ever going off my antipsychotic.
After my psychotic break and starting treatment for bipolar, I was a shell of a person. I had the opportunity to become anyone I wanted to be. I picked what I thought my best traits were from my last self and started on a journey of self discovery.
I vaguely remember my previous self and he had completely different motivations. The only similarities I recognize are things I decided to keep.
To keep this bit brief, my interests changed in ways I didn’t expect. My previous self would never have shamelessly written pornography.
My previous self used to care what people thought of him. I don’t. I only care about the consequences of how people see me. This doesn’t make a sociopath because I do care about how people feel. I want to communicate effectively. I try to tailor my actions so other people feel I am listening and that I care, because I do. My previous self wasn’t so explicitly and logically calculating about relationships.
My previous self was brutally honest. I try to be kind when confrontation or blunt honesty is necessary.
Overall, my maturity increased by about 20 years in the last 3 years. My previous self is a person I’m not fond of.
Overall, not worth the insurance settlement. If anything, the idea that I cashed out ended up alienating me from my entire support network. Friends and family, people I’d just met who had been told my story before hand… Yuck. Glad to now run in different circles selected for maturity this time.
It's not like we can sell brain injuries at every corner store to change peoples' lives.
There are cases, were people destroyed the centers for speech with drinking and recovered the ability by shifting it into other areas.
So to heal, one needs to rekindle the obsession and basically keep the request for the functionality constantly open. It is hard though, amounting to basically retrain a area of your brain for a different functionality.
One addition. As doctor, one gets a very good view of the finiteness of human life. This "grown up" perspective, is then expected from patients, who instead expect a miracle head electrician that can fix everything in an instant up to/not yet included neural death.
We all can end, any day.
In your sleep, one stroke and its over.
Such is the world.
Carpe Diem, Memento Mori.
They gave me some anti-inflammatories for my nerves and sent me on my way, and everything seem to get better. I quit that job within about a week, and I’ve never experienced that kind of stress since.
It took me a long time to notice but my face still kind of droops on that side, and I don’t think I ever went back to feeling … normal. I genuinely feel like my personality changed, but maybe that was just the stress’s effect on my life, I don’t know.
The point of my story is who we are is just so much more malleable than one would think in our day-to-day lives.
I had what I described as buzzing lightning bolts across the right size of my face at the time.
I was (am?) a fairly high iq person, national merit scholarship, 99.8%tile SAT scores, etc. Degree in mathematics, compsci.
I had a stroke in my 30s, and it was thankfully mild (slight dysarthria that went away in a month) but I'm certain it impacted my intelligence and ability to concentrate. I can't focus/concentrate for long sessions anymore. I used to be able study without problem until the need to sleep kicked in, but now I get tired/distracted after only a short time even if I'm well rested. I find complicated math significantly harder to learn than I did prior to the stroke.
When I complained about this to my local PCP he would only run normal post-stroke cognitive tests like word recall, naming places/things, etc. "You test normal".
So I got a 2nd evaluation from a neurologist at Mayo.
Feedback was basically the same thing. He diagnosed mild depression, suggesting that could be part of it, and offered an anti-depression med, also threw in a "you're getting older so can expect some slowdown" for good measure.
I probably should have took it because the clear-to-me-loss of ability, with my doctors not seeming to give a shit, or even talk about it left me with no hope or plan to recover it has made me want to kill myself at times over the years. (I'm fine now, not a threat or risk).
I still read and try and just do my best even though my best isn't what it used to be, and count myself lucky that the stroke didn't leave me disabled or with permanent apparent deficiencies.
I just wish it were easier to find doctors interested in helping you be the best you can instead of simply not broken.
I'm a neurosurgeon and we commonly advise our patients: Even after a "perfect" or minimal surgery without any evidence of periprocedural stroke or complication, you may not ever be the same again. Sometimes it takes months for these changes to be noted, sometimes it's only even noticed by family members. Odd word finding difficulties, perception changes, memory/concentration issues; the gamut is endless. As we say, no one's the same when the air hits your brain.
Username checks out
seriously, though thanks for the insights and... how the hell do you have the time/energy to visit HN?
Took 3 years and dozens of doctor and hospital visits to figure out. At every stage I was dismissed. Took a big clot that nearly killed me to figure it out.
I had severe cognitive decline, but since I started at borderline genius and went down to “somewhat slow” they felt I was fine. I regained much after starting blood thinners, but not all.
Infuriating. So sorry you had to go through that unnecessary part.
> I regained much after starting blood thinners, but not all.
Bittersweet! Thanks for sharing, and my best to you.
Yeah I went through some medical things some years ago and one interaction has stuck with me. I described the issue to a specialist and the doctor’s response was “what makes you think that’s abnormal?” and basically tuned me out. It’s abnormal for me!
I have no idea and wouldn't claim this is true for you in your situation though. My partner has brain cancer and I wish I'd tried this earlier.
I wrote a blog post, which I intend to submit for fact-checking some day: https://www.taxiwars.org/2021/06/folly-medical-hyperventilat...
After posting that I figured out how the antidote for oxygen toxicity got memory-holed. It was in the 1950's, and ... there was a little protest, circa 1959, saying the new guidelines weren't so great for carbon monoxide poisoning.
My email address is in my profile, drop a line with a link to this comment and I'll provide more references.
I wish there was a searchable index of Dr's that fall into this category. I have no idea how you'd reasonably determine this though... Plenty of Dr's I've tried based on reviews are no different than the others. Maybe friendlier, but that's about it.
BPC-157 and lion’s mane in particular.
It really depend on the exact issues and symptoms involved. Maybe the visual system is damaged, or the vestibular (balance) or other areas. Thankfully, the brain is incredibly fault tolerant, so it can still find workarounds and co-op other systems to make up some of the difference.
But the workarounds are less efficient and this creates a tremendous load on attention and working memory. In hardware terms, imagine you're playing some graphics-heavy game and your GPU gets fried. The CPU can still run it, but it'll be really laggy and overheated. Luckily the brain can (sometimes) heal and rebuild broken systems. But it takes work.
Somewhere around 90% of concussion suffers have visual problems. Poor tracking, double vision, light sensitivity, difficulty focusing. Their brain compensates so well they might not even notice, but that sort of thing interferes with memory and wears out the brain really quickly. Therapy involving eye tracking, smooth pursuits, focusing practice and the like can get your brain to repair or rebuild those skills. That frees up all that processing power and gets you feeling more normal.
The Shaken Brain by Elizabeth Sandel goes into the known science of concussions. Highly recommended if you've had one. https://www.hup.harvard.edu/catalog.php?isbn=9780674987418
Heart, gonads (testicles), lung, kidneys, liver, stomach, pancreas, limbs.
But you can't transplant a brain out into a new body. Take care!
Feel free to message me if you want to talk more about your experience with someone
In Oct I fell again, in the same strange way, but this time from a much higher height. I didn't blackout but I immediately knew it was not good. My symptoms have still not fully resolved 2 months later. The skin on the left side of my head is at times extra sensitive and at times borderline numb. I frequently have trouble focusing and have ended up taking 50% sick time to recover. The good news is that overall the symptoms are getting better.
I've surfed for over 20 years and fallen on significantly larger, more critical waves with no injury. Losing the ability to focus and think clearly is terrible, I wouldn't wish it on anyone. I also believe that because it's not a visible injury (ie I'm not walking around with crutches) it's harder for others to empathize with. Thankfully I feel supported by my employer, but I now believe that head injury severity likely goes undiagnosed and certainly under-appreciated in our society. The falls I took were very minor, if it can happen from that, my guess is it's more frequent that we realize.
https://www.reddit.com/r/surfing/comments/q34gv1/sterling_sp...
Tons of comments from surfers experiences there.
Check out the book:
The Concussion Repair Manual by Dr. Dan Engle
I experienced this summer of 2020 on the California central coast. Symptoms lasted for about a month. Happened again around December 2020.
I had been on a high-carb low fat diet for a few months before the first incident. I think that may have made me more vulnerable to inflammation issues. I've since switched back to a higher (healthy) fat diet. Fat is protective for the brain.
Here are some things that helped me: 1. Many of my symptoms improved immediately with the Jim McMahon (the football player) concussion treatment. It fixes a neck issue with C1 and C2 shift. Google it. 2. Antidepressants did nothing, but Provigil has been a lifesaver for focus and xanax when I’m overwhelmed. I take them when needed. 3. Good doctors understand the issues, but you need to find them. I’ve had success with USF Dept of Neuroscience.
I still have the concussion symptoms, but I have adapted to a new way of living and I’m at peace and grateful. Good luck to everyone in this boat, you’re not alone and it can get better.
These chronic symptoms still fucking suck though. I feel like I haven't been thinking straight for the past 6 years
A study using ICES PEMF and measuring efficacy using the Brain Gauge (as far as I am aware, it's the only tool out there that can accurately detect mTBI) https://downloads.corticalmetrics.com/pub/corticalmetrics_ma...
A list of links from Dr. Bob Dennis on this topic: https://forum.fluxhealth.co/t/closed-head-injury-epilepsy-an...
More research links on the Brain Gauge and how it works https://www.corticalmetrics.com/publications
I hope this information helps others.
I wanted to talk about a special case of brain injury, namely: self-asphyxiation through psychogenic problems.
I had to experience this myself the last month, I wasn't particularly aware that such a thing could occur, 2 weeks ago I was in a delusional loop, that in turn caused me anxiety, which lead to psychogenic dyspnea(irregular breathing, feels like choking). It wouldn't dissipate for a long time, my head or brain I'm not sure what to call it anymore, constantly: tingling, itching, like gears constantly pulsating, until the sudden onset of what felt like a screw loosening and jumping out, this is the best analogy I can think of as of now. This isn't a one time occurrence, there have been plenty of similar experiences that I've piled up over a timespan of 3 years as of now. I am 24, just for the record.
As the reader may infer, sleep schedule?: sucks, diet?: sucks. friends?: none. Loneliness?: since a long time.
I'd like to think of myself as someone very patient and resistant to most things other humans can't deal with, but I too have occasional meltdowns. In some rather amusing fashion, I've glanced upon this post before sleep, and after sleeping I broke down in tears, and came back to this thread. Everything is becoming too much, I probably have to seek help, this facade of the invincible is probably hindering me much more, and the delusion of self-progress through ones own intellectual effort seems to be in vain, more and more. I'm trapped in this maze within a maze, I've given up as of present. I don't know how to continue, but I will.
There is no tyrant, like a brain.
edit: I'm at a point where I can't tell apart whether I became dumber due to the asphyxiation or not, I do notice a change in perception ever since that last week, but is that a delusion? Can I delude myself of a feeling, a physical one at that? And, yes, I don't visit the doc very often. Nonetheless, as the days pass my capabilities seem to return more and more to the "usual".
He worked with these people: https://mindeye.com/
I had to learn who I was again. I’m not the same person. I don’t even know the person I was before.
Before the break, I used to run table-top rpgs. I found I could no longer run them. The mental capacity just wasn’t there.
I still can’t work full time consistently. I average two days off per month without notice. Fortunately, my current employer is happy to work with me. I am beyond thankful none of my technical skills or abilities have been significantly impacted. They come from parts of my brain that weren’t damaged.
I’m slowly recovering but the pandemic and medications for bipolar aren’t helping.
But I am recovering. It’s three years later and I’m just barely managing to run an online game for some friends every two weeks. Maybe in a few years, it would be so hard.
Almost five years later, I am doing much better. I found the right medicine (sertraline) after a long year of mixing and matching medicine to curve my OCD. However, I feel like I haven't fully recovered. I still question almost about every feeling, thought and action. Intrusive thoughts are an every day occurrence. I have brain fog, thoughts are scattered, constant noise in my head, and somehow developed tinnitus in the midst of all this chaos.
I look back at what I was able to achieve, and keep using that as a goalpost. I get upset with myself that I am not at that level performance. I am getting to the point where I am learning to accept life for what it is, and not "looking in the rear view mirror".