A few years ago I got some kind of brain illness. Doctors were unable to come up with a strong diagnosis, which is apparently quite common for such cases.
One of the effects of the illness was that I essentially became stupid. I couldn’t focus on anything (even trivial activities like watching television), I couldn’t compose emails, I would get disoriented easily. It was absolutely terrifying not knowing whether or not my mind would come back. At the time, I would have preferred having a disease like cancer because at least I would know what I’m dealing with. Eventually I did start to get better. Like the author, I think I’m probably not quite back to who I was before getting sick.
A couple things I learned from my interaction with the medical system - 1. Like any other industry, 90% of medical “experts” are totally incompetent. 2. The state of diagnostics is pretty abysmal. So much of medicine is completely nonscientific guesswork. Most doctors aren’t even aware of the latest diagnostic developments in their own fields. Think about the people you know who learned Java in college and then never learned another programming language; chances are, your doctor is that kind of person.
> 1. Like any other industry, 90% of medical “experts” are totally incompetent.
Yeah, I've come to the same conclusion. When I was a kid it took 2 years to diagnose my, frankly quite textbook, hypothyroidism. Know who first diagnosed it? A friend of my mother's who worked the toll booth at the airport. Her dog had it, you see, so she recognized the symptoms. My mother had to go full Karen mode on a doctor to get them to order the simple blood test that would confirm it.
A few years back my father had a valve replacement due to childhood rheumatic fever. At ten days post op he woke up with an unstable heart rhythm and went to the hospital. They gave him drugs to get the rhythm under control, which failed. After two days, I get a call from my sister, a neurologist, telling me to get to the hospital immediately. When I arrived, he was short of breath and in a bad way. At the hospital my sister took one look at his EKG and remarked that he was at risk of going into tamponade at any moment. She asked if anyone had bothered to do an echocardiogram when he was admitted -- they hadn't. She just about chewed out his nurse and they ran the echo. Lo and behold, he had pericardial effusion: a half litre of fluid was compressing his heart. They rushed him into the catheter lab, drained the fluid and his symptoms resolved immediately.
On Monday I was having coffee with a coworker and mentioned that my father had a valve replaced and he'd been in the hospital over the weekend. My coworkers immediately remarked, "Oh, he had a pericardial effusion." The medical staff had become so fixated on his erratic rhythm that they had forgotten the context of his case: if someone shows up with symptoms of a post op complication, don't start by trying to diagnose an unrelated malady. My coworker? His mother had a valve replacement and had a pericardial effusion.
That's a lot of words to say: checklists save lives.
> if someone shows up with symptoms of a post op complication, don't start by trying to diagnose an unrelated malady.
Did they know he had the operation? Medical record sharing in many places, especially the United States, is atrocious even where it exists which is far from everywhere and causes a lot of problems.
With doctors, you are your own doctor and the doctors you see are subcontractors. First appointment is a job interview. That’s the best way to think of it IMO. I guess I’m privileged to have the money to do this.
Google helps you know what it could be, but you need to do a fair bit of research and critical thinking.
Unfortunately if you are sick this is the last thing you want to do!
I'm all for taking charge of your own health priorities, but don't go too far to the other side of the spectrum. Witness all the "shade tree epidemiologists" that came out of the woodwork last year. One or two Facebook conspiracy videos, and they were suddenly health care experts, confidently spouting off COVID-19 facts they picked up from the YouTube channels of Crystal Energy Lady or Vitality Supplement Guy.
Doing research means actually researching. Not doing a few Google searches and watching YouTube videos that already validate what you feel in your heart.
Ok, but doing a little research on pubmed in March of 2020 allowed me to see all the research that had already been done on SARS, that showed spread within apartment complexes and indicated these sorts of diseases were almost certainly airborne rather than spread by droplets. And a lot of "outsider" aerosol experts were saying that all year. Still it took the CDC months and months to admit it.
When the experts start acting like experts, I'll be happy to hang up my shadetree epi role for good. But for now the WHO and CDC have been very political in their pronouncements and not as science-based as I would like.
Sadly, the bar, and duration required for the science you describe is higher than "a little research on pubmed...on SARS". I'm a little flummoxed by the description of not rushing science as political.
It's not scientific to assume spread is not airborne, then tell everyone to assume spread is not airborne, until research confirms beyond a reasonable doubt that it's airborne. Science isn't about pretending that the first guess that comes into your head is the truth until proven otherwise.
Unironically, becoming a crystal healing hippy is probably better for you on expectation than subjecting yourself to the iatrogenic interventions the median doctor will probably subject you to. The same is true of e.g. faith based healing. It doesn’t matter if it literally does nothing except make you feel a bit better - that’s probably better than going to the doctor for most conditions.
Beyond that, doing a bit of research yourself will almost certainly give you better info than listening to whatever bullshit the CDC puts out for mass consumption. This isn’t specific to coronavirus or anything - this has always been true. Establishment medical organizations already have shit results, and it’s not going to get better when you throw political appointments in the mix. Same is true of health recs from other government bodies like USDA. Their health recs change constantly with no evidentiary basis.
Good point. Reader beware! There are sites that seem to give good evidenced based and well researched answers. Even then when you go to the doctor and say “I read about x can I get that tested” it might be “sure you can get a test but the information cannot guide treatment so it’s not worth it” so in that case maybe the doctor knows the details better than you could ever hope by searching the internet. But the internet is a good way (and not including avoiding YouTube!!) if building up an initial mental model, then you can suggest things to doctor and see how they respond.
I feel that if you go in blind you are at more risk of a lazy doctor doing the 3 things lazy doctors live to reach for as a snap judgement: antidepressants, antibiotics and a psychologist referral.
Richard Feynman in What Do You Care What Other People Think? says something similar happened with his first wife Arlene who contracted tuberculosis. If we trust his account, then it went something like this:
Arlene presented with bumps on her neck and the doctors couldn't figure it out. In his free time Feynman read medical textbooks in the Princeton library, and the first thing in the book is tuberculosis, which it describes as being "very easy to diagnose." Feynman assumes if its so easy and the doctors can't figure it out then it has to be something much rarer, something like Hodgkin's lymphoma. He asks the doctor about Hodgkin's, and the doctor admits it is a possibility.
> When she went to the county hospital, the doctor wrote the following diagnosis: “Hodgkin’s disease?” So I realized that the doctor didn’t know any more than I did about this problem.
After several months the doctors order a biopsy of her neck and pretty easily confirm it was tuberculosis. Feynman concludes that he made a huge mistake assuming they ruled out the easiest diagnosis.
Feynman's behavior seems rather irrational in this case. If he believed the doctor was smart and competent he shouldn't have interfered. If he doesn't he shouldn't have made the assumption about what the doctor "obviously considered".
As a result the doctor probably concluded he should never listen to the patients' ideas and rather always put the easiest diagnosis which also is a quite common kind of a doctor to meet and is not much better than a totally incompetent one who doesn't even know the most common diagnoses but at least would listen to you as long as you sound reasonable, make the tests and try prescribing the medications you suggest as long as they are in line with the literature.
Yep, if you really want someone to think hard about your condition, a hospital is the wrong place to go. And a lot of doctors will become defensive when they realize you’ve put more thought into it than they have.
The quality of the group of doctors who emigrate from one country is not representative of the quality of all the doctors from said country. For example, it could be extremely difficult to emigrate and may require exceptional talent over peers to do so. It all depends.
It took me 15 years before I learned I had a b-12 deficiency. The test is simple and cheap, the treatment is simple and cheap, and the symptoms have been known for decades.
If I were you, asking for this test would be the first thing I would say at the doctor's, explaining why I want it would be the second.
Obviously most people wouldn't know they need it but IMHO this has to change. Everyone should be taught basic physiology and diagnostics at school. Every device comes with a basic manual - so every body should. I actually wonder why isn't this already the case in the USA where many people can't afford a doctor. Living some years without insurance taught me I really need to have some basic medical knowledge myself and it actually is easily available nowadays.
Was abroad in a tropical climate to wait out COVID. Took our dog. 10 days before traveling back home, I see a engorged tick walking on the living room floor of our Airbnb. I was terrified because we have small children. But having grown up in a tropical country with a dog that would be full of ticks sometimes, I didn't think about our dog much.
On the 6 hour plane home, our dog is basically mute. He's very good traveling, but never that good.
We finally get home. He's not eating. He's sitting curled up by the door. I thought he missed the huge patio of our tropical house and the outdoors. Finally, when his favorite visitor came and he didn't even flinch, I knew something was really wrong.
Unfortunately, I had waited too long to take action: The day before the vet appt, my partner called me freaking out saying our puppy's eyes were rolling back and he was barely moving. I rushed him to a VEG clinic, where they ran all kinds of diagnosis.
I told the doctors where we had been, what I had seen, our dog's behaviour in the prior days etc. At this point i start requesting all the diagnostic results because a close person to me is a vet in said tropical country, and she could literally diagnose our dog.... over WHATSAPP. Her assessment was immediate and direct: My dog has babesia, and had gone into shock because the parasite had eaten all his white blood cells and platelets.
Doctors in the US were not quite on board yet. They first asked a million questions on what my dog had eaten. They were convinced that something was wrong with his stomach because he wasn't eating and also I believe there was tissue inflammation / sensitivity (which was also explained by other factors related to tick disease). They did run a tick panel and came back negative. They were not convinced by the babesia hypothesis. It detected no antibodies for it. (IIRC, My contact had told me that was common in situations where the virus had obliterated the immune system and the body had not had enough time to manufacture antibodies which could be detected by the test.)
Then starts the cachopony of errors. My dog breed is known to have heart murmurs. His murmur was present prior to the trip, and i had test results from the vet in the tropical country which showed the murmur had magically gone from a 1 to a 5 in about 1 week, so they started saying he had a heart problem. (nevermind that the heart behaves erratically when blood is poisoned by foreign invader).
Next day, they start saying it could be heart disease coupled with genetic issue. They want to do genetic tests. I say no.
At this point i have to discharge our dog because the clinic will close for the weekend. I take the dog to my vet. There they say its some kind of cancer (!!). They insist i do a biopsy...
By now my dog is stable but I still needed an Echo to be able to complete the diagnosis puzzle and avoid hospitalization at a major nearby hospital.. Took him to another VEG that was open, for diagnostics. This was covid, so i was sitting outside in the bitter cold with a sick dog. After a 5 hour wait they give me my results and sent me on my way, no directions on what to give our dog to keep him stable.
Next day, our dog deteriorated rapidly, and I was forced to do what I had been trying to avoid: get him admitted at the animal hospital. Signed off on a minimum admission of $2.5k. But hey, at least they didn't redo all tests (they wanted to).
Finally the resident infectious disease expert onsite requested a full tick panel (the IDEXX24 standard panel does not screen for babesia). Babesia is confirmed almost 5 days later.
Final bill $4500.
VEG did reimburse me almost $1000 because the managing director agreed it was borderline malpractice to discharge my dog from the 2nd location without a proper plan. I should be clear, although the doctors at the 1st VEG location were waaay off making up diagnoses as fast as they could think them, at least they did not hand me the dog and tell me... "good luck" , which is what the 2nd location did. And the experience with them from a financial standpoint was not adversarial. Both locations were forthcoming with costs. Very much unlike the hospital, which made me feel bad for.... trying to get any sort budget, before admission.
TL-DR: To a hammer, everything looks like a nail.
A clinic does well with broken bones, foreign objects in the belly, and the like. They don't do well with infectious diseases, even those that are quite common elsewhere, particularly for those that they never see at home.
While I have no particular position, my brother is a molecular biologist and bioinformatics guy who has been published in nature, featured in NYT, etc. A true scientific nerds nerd, and he endlessly ridiculed the poor science and poor scientific understanding of people on the M.D. track that he interacted with in labs while he was doing research.
I do have this anecdote from deep personal experience though... pediatric cardiologists working at research hospitals are some of the kindest, most compassionate, honest and respectful people I have met. Everyone tends to treat children with condescension and patronization (and I feel safe to extrapolate that toward their views of people in general), but those doctors seem to know that as a child you've been weighed... or maybe they just comes from a place of true compassion and pity, people underestimate the importance of compassion, kindness and listening by doctors.. especially as issues become more complex.
I do think AI assistance is going to make a large difference in medical diagnostics work even if reality hasn't caught up with the hype yet.
It’s a bit of a misunderstanding of the role of doctors as well IMO. Apart from a small fraction of them they aren’t scientists or researchers and aren’t supposed to be. And the human body is complex, problems can arise which can’t easily be understood. The expectation that every doctor is House and we’ll each get millions of dollar of diagnostics is wrong. There’s also a reason why experiments in science require an awful lot of preparation and rigor that doesn’t exist in the happenstance of the real world. No AI is going to solve for a lack of information or confounding factors that make understanding what’s happened impossible.
I had a heart attack nearly six weeks ago despite being healthy, fit and having no chronic health issues. They kept me in hospital for five days after I got a clot squished by a stent. I’ve come back negative for basically everything bar some immune disorder tests I’m waiting on the results of. The fact I’ve not heard probably means those were negative as well. So I got this fatal blood clot and the medical staff absolutely knocked it out of the park in terms of working out what the acute issue was, dealing with it without undue distress (seriously a PCI is magic) and my care and rehabilitation afterwards has been great. But I’ll likely never know why it happened.
The other side of that is I end up on a standard cocktail of medication despite having a normal blood pressure, normal cholesterol and so on. Essentially the drug regime seems calibrated for the average heart attack patient which is someone older with chronic problems. I had a rash as a side effect and the doctors swapped a med and I’m fine again. How did they know what to change of the six meds? I guess experience and wider statistical analysis in the medical community. It worked!
They get paid as if they are super experts even when most of them aren't. People wouldn't complain about the skills of doctors if they just earned 100k a year or so. I don't understand why USA doesn't just open up the floodgates and stop the requirement for doctors to get a bachelors before starting their doctors degree and with that get way more doctors and push down wages.
So are software engineers in the USA! Particularly FAANG ones! And we get sensible working hours, plush offices and all modern conveniences. Pay isn’t really related to how much of a super expert you are unless you really, really are one.
Both my brother and his wife are doctors in the UK as well and I wouldn’t put up with the level of assessment and work they have to go through. My brother is 37 and still studying for and taking exams. Getting your medical degree is just the start of the learning process.
I remember former fellow students telling how they corrected medical students' practical physics internship assignments. Apparently the statistical rigour is much lower. On the other hand, I guess in pure natural sciences you work with much more indirection and have zero results nowadays unless you use a lot of tools. Probably there aren't that many medical conditions that can be treated in-depth based on first principles but I think concluding that whole medical science can be replaced by an AI assistant might be a bit far-fetched. Compassion is probably under-estimated indeed. Some people with serious conditions prefer to be treated at objectively less sophisticated yet less industrialized facilities.
I also think "concluding that whole medical science can be replaced by an AI assistant" is far fetched. I hope that wasn't what you took away from my comment.
> poor science and poor scientific understanding of people on the M.D. track
Definitely a thing. At least historically, research is not a big part of a MD program in the US. MD/PhD programs are where its at -- Basically you do a few years of med school, then PhD, then finish MD. Its a very long haul. After which you usually go into Postdoc research or medical residency.
The best doctor I ever had was incredibly perceptive and compassionate. What did she teach in med school? How to work with patients (i.e. bedside manner). She moved on to head palliative care, another area where empathy is key.
Like any other profession doctors span a range of competency. There is an old joke: What do you call the person who finished last in medical school? Doctor.
First, I'm so sorry you're going through this illness and hope that you make a full recovery.
But I think that, to some degree, your feelings about the medical profession is a reflection of just how good medicine is these days. People go to the doctor expecting an accurate diagnosis and a treatment or cure. And, to be fair, 80% of the time, that's what they get. It's hard to overstate just how much of a radical shift in expectations this is.
Just a century ago, a compound fracture could be a death sentence. People randomly got sick a just dropped dead. Going to a doctor might, maybe, if you were lucky, fix what ailed you. Hell, just two centuries ago, doctors as we think of them today simply did not exist. Three centuries ago, people in Europe were routinely bled to balance the humors.
Biological systems are mind-numbingly complex. All the simple stuff has been figured out -- and if they are diseases mostly eradicated. Even so, I think that people's expectations of what doctors do is a bit... off. 99% of doctors are not scientists -- they are human body mechanics. And that means they mostly focus on common problems. Because, you know, they're common.
And neurological conditions are some of the most difficult to diagnose. Imaging techniques like MRI or CT often show no problems. Exploratory surgery is highly risky and also usually have no benefit. To extend the mechanic analogy, imagine going to your mechanic and saying "my car's GPS system is sluggish. sometimes. What's wrong?" and then expecting them to figure out what's wrong without being able to look "under the hood" of the computer system. All they can is use the GPS system and observe its behavior. That's essentially what neurologists have to do quite often. Tough job.
The good news is that there are doctors who engage in research. And they are, by trial and error, improving the state of the art of medicine. Does this knowledge get propagated to all other doctors rapidly enough? Probably not. But the knowledge dissemination is probably better today than ever before too. Obviously things can be improved. As pretty much anything can be improved. It just doesn't seem very helpful to spout "doctors are idiots" as some other posts seem to do.
>90% of medical “experts” are totally incompetent.
My wife had breast cancer, muliple lumps irregular shaped, the only answer was full mastectomy, except the oncologist wanted to do a biopsy before they did they surgery.
"Why?" I asked, "You already said that the safest option is to perform the mastectomy, right?"
The doctor replied, "Well, yes but we'd like to know what we are facing before we got in."
Me, "Will it change what you do?"
Doctor, "No"
Me, "Isn't bad to poke the tumor because can't that actually cause cells to migrate?"
Doctor, "yes"
Me, "So what's the benefit?"
Doctor, "We just want to know."
Me, "It seems like either you are padding the bill or you are just following some playbook because you actually don't know what you are doing."
Doctor, "We're done here."
After the surgery,
Doctor, "We discovered cancer cells in the lymph node, but that's probably just a side effect from the biop........" At that point he realized what he was saying and he also realized that I was ready to launch myself at him.
If you were so certain the biopsy was unnecessary and harmful, why didn’t you just refuse it, seek a second opinion (especially as you evidently are portraying the doctor as a villian).
Also your last paragraph doesn’t even read well as preteen fall fiction.
How so? A doctor can always refuse to do a surgery and suggest you see a different doctor. All they would have to say is that I don’t feel comfortable doing the surgery without the test
> . Like any other industry, 90% of medical “experts” are totally incompetent.
100% correct. I’m dealing with some serious health issues the past year (multiple worsening chronic conditions, in and out of hospital, lost 30 lbs in 3 months, etc). And yeah, the vast majority of them are idiots who know nothing more than to pull out a (often dangerous) pharma that addresses a single symptom. And forget treatment - I was just hoping for a firm diagnosis. But they hem and haw, and don’t seem at all up to date with the latest research. You’re on your own.
First, my sincere condolences. That is terrifying.
> Think about the people you know who learned Java in college and then never learned another programming language; chances are, your doctor is that kind of person.
> Like any other industry, 90% of medical “experts” are totally incompetent.
I would guess it's even worse, maybe 1-5% of doctors truly understand the underlying physiology and will holistically look at all of the information. Most doctors I've met use population heuristics and published guidelines, and if you have something rare they just throw stuff at the wall instead of trying to understand it.
If you have any questions or attempt to have a discussion most doctors assume a 'where did you go to medical school' mentality, proceed to type your symptoms into an app, and then simply regurgitate the output.
As a doctor I would agree. 5% of doctors are up to date and provide high quality care. 95% are not up to date and provide low quality care. Most older doctors are grandfathered in to their specialty and do not have to take their boards but once in their life when they get out of training. So some have not taken their boards in over 30 years. Doctors in the generation after the baby boomers are not grandfathered in and have to take their boards at least every 10 years if not more often now in some specialties. So If I were you look for a doctor who graduated in 1991 or later as that is the year they stopped grandfathering. I graduated medical school in 1991. I have taken my specialty boards three times already (1997/2008/2018). Now they are moving to yearly mini-updates to stay up to date as things change too much in 10 years. None of the older doctors have to do any of this additional education and testing. They are still programming in FORTRAN.
I'm so sorry this happened to you and I'm glad you are starting to feel at least somewhat back to your old self. I definitely understand where this opinion of docs is coming from as there are definitely some incompetent docs out there but don't you think that your opinion is largely based around an anecdotal experience that is probably pretty abnormal? Medicine as a field is still pretty unscientific in a lot of ways. To me it feels like docs are like alchemists before the discovery of the atom/modern chemistry. They're doing the best they can with the tools at hand but their field has some fundamental gaps in knowledge. Is that really the doctors fault?
That's just my two cents. Obviously this doesn't do much to help folks dealing with poorly understood illnesses but I hope it helps balance out the "all doctors are idiots" opinion that sometimes comes up in threads like this.
Idiots is the wrong word. They've achieved a state of the art knowledge. An idiot wouldn't get there. The problem is, most of them stopped at that. And state of the art moved on.
I think a core problem is that the incentives are to give a quick diagnosis and prescription, and if that diagnosis is wrong, move on to the next diagnosis / prescription, repeat. This is in contrast to my experience with a functional doctor, who laid out a logical plan, testing to verify hypotheses, and only after all the pieces fit together, decided on a treatment strategy.
Of course, for the majority of cases, the mainstream approach works well or well enough, but it's definitely frustrating when you fall outside of it. I think some people don't even know they're falling outside of it (e.g. long-term gastrointestinal problems), as in they've given up figuring out the root cause and have learnt to deal with their symptoms. I think the number is non-trivial (1%+?), but I can't think of any way to prove that.
It seemed that most of the doctors I had to deal with were incompetent either because they were lazy or stupid. Realistically maybe they were just overworked, but the effect was the same. I’m not really interested in assigning “fault” here - that’s just a factual observation I made.
If there were specific criteria that I could share in an HN comment, they would be used for hiring and immediately collapse under Goodhart’s law. Your question is almost tautologically bad - If I were able to answer it in a brief HN post, my answer would be bullshit.
You can accurately probe competence by asking people questions about their thought process, their current hypotheses, etc. If there are $BIGNUMBER tests for competence, you only need to ask $SMALLNUMBER of them to make an accurate determination as long as the person being asked doesn’t know them ahead of time! This is the same trick many zero-knowledge proof algorithms use.
I just pretty clearly explained why I don’t need to understand every detail of the profession to accurately estimate someone’s capability. Which part of that was confusing?
Forgive me if I’m being brusque but you’re doing the same stupid defensive BS that incompetent doctors do when you ask them a question - “oh, and where did you go to medical school?”
I had something very similar. 2 years went by where I visited over 30 doctors, and none of the public healthcare (UK) primary care and specialists had any idea what the hell was going. I took matters in my own hands, was doing blood tests by own research, googled everything I can find. Turns out I had hypogonadism, and had evidence of blood tests to prove it, and even then it took 3 more doctors to prescribe me TRT. Hope software replaces docs faster than lightning
> There is a tendency for smart people to think they know better than experts.
They probably do. People hate to recognize this because it goes against most western notions of the value of work ethic, but a couple stddev of intelligence is, in many cases, more valuable than many years of experience. Sad but true.
It's not that they don't know, it's that they pretend they do, they don't want to discuss uncertainty and they dismiss when you bring it up. I'm on my 5th treatment that they're "very confident will really help a lot" but can't quite quote a percentage change of recovery for.
At least that's been my experience with very similar issues.
Sorry for your condition. You're not the only one in the boat. So at least we have company. I hope that helps.
To be honest, there are some computer problems that you really only get an inkling of when you've seen "weirdness" like that before.
I remember one debugging session that I traced all over the universe, only to find it was a (kernel) stack overflow. The debugging exacerbated the problem because the debug routines ended up using more stack to log the error.
The problem was strange in that it moved around and things broke that were not a problem.
for reference, most operating systems have stack sizes of many megabytes for userland programs, yet kernel stack sizes are usually just kilobytes.
I expect there are analogies like that with the human body, and with many more systems and with a time-critical life-and-death backdrop, I'm glad I'm not a doctor.
I also am suffering from something similar. I have the working theory it's from extreme burnout but do not know for sure. I would tremendously appreciate if you shared what you found to help?
It’s hard to say what actually helped, but I tried a bunch of behavioral changes. Two I’ve stuck with are significantly increased exercise (half an hour plus of intense exercise every day) and a strict ketogenic diet. Even if they didn’t do anything at all for my primary condition, they’ve resulted in totally orthogonal improvements to my life. A couple months of rest (didn’t have much choice there - I couldn’t do anything else). I also used nicotine gum as a behavioral reinforcement drug to help “rehabilitate” myself on the way back to health, and THC to help me sleep.
FWIW, I think it’s unlikely my problem was burnout - I had a number of viral-characteristic physiological symptoms such as digestive problems, coughing, and heart palpitations, and I would be surprised if they had a purely neurochemical cause - but in either case hopefully some of these behaviors could help.
The symptoms sound like ADHD. Are you sure that's not the case? Have you tried sleeping more or the opposite - sleep deprivation (which can often relief ADHD) or nicotine? I have had this for my entire life and I also know a girl who got this spontaneously. Perhaps some Adderall (or a good vacation) could help.
I’m sorry to hear this has happened to you and I do hope you’re only going to get better.
State of diagnostics is indeed very poor, esp. in a field like Immunology. It took 2 years and 4 doctors to find what was wrong with me and how to treat it. I had to scour medical journals for treatment suggestions and then press on my doctors to try it. Sigh.
Probably a reference to this[1] although the tweet is since deleted. Basically, some guy had heard/felt a sound like a bass guitar string snapping in his head and had some pretty serious symptoms afterwards, which he thought were physiological but many commenters leaned towards some psychological issue, since the OPs explanations were somewhat nonsensical.
They do like mentioning The Art Of Medicine when it's not a simple ailment, or treatment failure. And I get it.
It might be the only profession I know of that can still bill though. They make sure they are paid.
I do get the difficulty of the profession. I know most treatments are Placebo cures. It's a weird profession. Or, we still know very little, especially ailments that affect the brain.
Hard to say what actually helped, but two high-impact low-cost behavioral changes I made (and stuck with) were a strict ketogenic diet and regular heavy exercise (mixture of cardio and weight training). Ketogenic diet has a lot going for it - besides being a nice elimination diet (in case your problem is some kind of dietary autoimmune condition or food allergy or something), it also treats a lot of possible metabolic conditions. Exercise as well. I’m sure resting (mentally) helped but I didn’t have much choice there - resting was the only activity I could really do, and even that I couldn’t do very well.
I also made a throwaway account to make a comment here. I also said the article was well written. I am an HN regular, but didn't want my medical problem tied to my HN account name.
Is it that odd that we might have polar opposite views on the article? Or that having a somewhat similar experience to the author, that I might view the article differently than you do?
This was sarcasm, right? I’m not one of the old-timers by any stretch, but I’ve seen plenty of code that compensates for workarounds introduced by poor planning or hastily-cobbled code.
You have no idea how much technical debt there is in the average body. There's much more technical debt in the body than there is technology in the world.
The two systems aren't remotely comparable in complexity.
What's wrong with prescribing a drug for a side effect of another drug?
If you get cancer, the treatment you get can cause very many side effects which in turn can potentially be alleviated by other type of medicine. What would your suggestion be? Not to treat the patient at all?
Really well written, especially considering the author's plight.
Regarding this bit:
>The day of the accident I had been working on a project to improve how homeless people are placed into shelters. I say out loud, “I don’t care about homeless people” to see how it feels. It doesn’t ring true; I do care about homeless people. I just don’t feel like working.
I wonder if that's directly to do with the brain damage or not. I survived a particularly rough "you're gonna die" type cancer. And I have similar issues with depression, motivation, procrastination, and so on. Which I know sounds counter-intuitive. I survived, and the physical aftermath isn't really bad. So I should be grateful versus depressed, right? I have tried a variety of depression meds over the 5 years that have passed. I really can't tell if any of them work. I suppose partly because I'm not despondent really...just mostly unmotivated. None of them changed that.
Anyhow, just to say that near-death experiences, even without physical damage to the brain, seem to have mental consequences.
The book "Tribe: On Homecoming and Belonging" discusses similar dynamics with returning combat troops, and others that have lived through war or extreme challenging scenarios. The surprising finding is it's not the memory of the event that causes PTSD/depression, but returning to "normal" modern, atomized and isolated life of relative peace and stability.. and losing the excitement, adrenaline/thrill of events arguably humans have been adapted to thrive in: challenges and struggles, especially alongside a group of people facing same challenge together. Many people have been polled as being happier in for example war time London facing bombing raids, death and destruction, than peacetime after WW2. It's a good read.
I imagine it's different for different people. I survived an event that m doctor at the time warned me there was very little chance of surviving. After working through all of the stages of loss over my future, I managed to come out the other side of my health issues with less impact than expected.
Now it's almost like I've made peace with my death, and don't much care about anything anymore. The only way I can rationalize what my brain's done is it's accepted a world without me, and is OK with that. It's odd, you'd think someone that survives a traumatic event would be overjoyed. I'm just "meh" most of the time now.
>Have I always been bad at finding things? Maybe? There are limits to how well an injured brain can scrutinize an injured brain.
This is something I've worried about ever since I was a teenager. If something happens to my mind, how will I know? The answer I've come up with is that I can't fully know, but my best bet is to "reason on paper".
Externalize the facts and opinions (write them down or say them out loud) and then run logic on them using some explainable algorithm. Basically, do it like we do math: the numbers and figures on paper will allow anyone to continue where you stopped. Even if you forget what you were doing or you can't do large scale abstract reasoning, because you've written it down, you can do it piece by piece.
When I suffered what seemed to have been a "ministroke" (basically a stroke that solves itself) my cognitive abilities were obviously affected. I seemed to operate basically only on short term memory - several seconds at a time. Anything that happened before that seemed to fade from memory. Saying out loud what I wanted to do and then continuously repeating it out loud enabled me to do more complex tasks. Unfortunately, I had no sense of danger from it.
Writing (typing), however, was not really possible. I knew what I wanted to write, but it became "slurred". I hadn't considered that before. I even recognized myself that what I wrote was difficult to decipher, but somehow I just couldn't type out the words correctly.
I still think that reasoning on paper or out loud is your best bet in these situations.
Well, if the thoughts are bad, they can lead to anxiety and torment, so removing them can alleviate these feelings, or so the thinking goes. But perhaps the causal relationship between the two is the reverse? Interesting to consider.
My mother died from a traumatic brain injury. She fell down the basement stairs in the middle of the night and smacked her head on the floor. They tried to fix her up at the hospital but as is common with TBI her brain began to swell.
They tried trepanation. It did not work.
She went brain dead. I was half a world away at work. My father made me make the decision. The doctors pulled the plug on her 52nd birthday.
That was 20 years ago this very year.
I do wish they’d put a warning on these types of articles.
A good point to make is that unlike most other professions, negligent -or downright dangerous- doctors are not naturally flushed out of the profession by market mechanisms that keep other professions in check.
As documented by Marty Makari's book "Unaccountable", state boards rarely if ever sanction doctors for negligence. First, bad doctors are protected by a code of omerta from public exposure [1]. This is often because the bad doctors are the ones that deal with the awful hours / patients / cases, no one else wishes to deal with.
In the rare instance sanctions happen, they simply go to another state and continue to practice [2]
Therefore, you are far more likely to end up with an incompetent doctor... than you would like to think.
Notably someone as incredibly malignantly incompetent as Christopher Duntsch worked for two years after his first horrible work was discovered.
These people are protected in their incompetence.
For generations we’ve been told that regulation will help. It hasn’t. Suing post facto hasn’t. It’s time to try something else. It’s time to try deregulation and market factors.
I truly sympathize with this woman--an injury of this nature dramatically alters your perspective on life. I had a small brain injury about 2 months ago; I never got a diagnosis from my high powered neurologist but we suspected it was related to covid. Thankfully I recovered after about a month. The symptoms of brain injury can be incredibly weird. I'm in touch with people who no longer experience emotions; who lost their internal monologue. My weird symptom was that I would get headaches and light sensitivity after sex.
It's interesting. You find out that most of the people you thought cared about you actually don't. You find out that most of the things you cared about don't actually matter. You find out that the neurologists that were supposed to save you are actually just wasting MRI time to write bullshit papers to pad their CV. Even if they wanted to help you, they don't really know anything about the brain, and are dozens of breakthroughs away from getting there, and the few medications at their disposal can't change the reality that neurons don't heal or regenerate, and you'll have to make do with fewer of them. The world moves on without you and it doesn't care if you recover or not. If you were smart, you desperately try to avoid being lumped in with "stupid people", knowing how little respect people have for that population. You realize how much your intelligence factored into your ego and identity. It's not your fault after all. This isn't who you are. It's just an injury. But eventually you come to terms with the fact that your brain really does define who you are, and maybe you accept that or maybe you don't.
You think it's an article on the downsides of excessive patience or zen meditation, but no, TBI.
As a tangent: I learned how to enter a waking ideation / guided daydreaming state associated with sensory deprivation without extreme stimuli removal. It is good for startup ideas (not that they're any good but for generating them), fiction novel outlines, and letting your subconscious out.
Edit since I can't comment below right now:
I'm so sorry, I learned it intuitively by spending days / weeks by myself without human contact or interruptions in a low stimuli environment. Instead of going "crazy," it's possible the mind can entertain and amuse itself. I think this also explains why kids (and adults) in very poor countries have such wild imaginations and are so happy when they have almost nothing. And, where else would magical realism arise if not Colombia?
> As a tangent: I learned how to enter a waking ideation / guided daydreaming state associated with sensory deprivation without extreme stimuli removal.
Awesome. How? Any books/articles/resources that
could help?
Exactly! While most click bait has interesting titles, not all interesting titles are clickbait. So many people seem to want headlines to be merely an 80 character summary of the article. That’s fine on articles of news - “so and so has died”, “Country declares war on Country Y”. Or in tutorials. But in pieces of writing we are reading mostly for leisure there’s no reason for it to have such a matter-of-fact title.
For me clickbait is hyper-sensationalised, usually misleading, and typically the article doesn’t deliver what the title says it will. None of those three attributes are true of this title or article.
Personally I got over that long ago; the style itself just irks me to see. I left Facebook to get away from attention-economy junk and am sad to see it show up here.
Perhaps due to her head injury - I was surprised at how readable it was and just presumed she had significant help editing it (although that is unclear, perhaps not).
This is the best article I have read that was posted to HN this year. Most other articles that try to be insightful just reveal the writers own stupidity and desire to follow trends.
Worst injury out of the family, and I'd definitely agree with her. I definitely throughout the story was able to imagine myself being in her position and how dreadful it would be. I think self centered is totally fine, since it's her shitty circumstances that could really happen to anyone.
Losing your intelligence could very well be one of the scariest things.
Reading the author's description of waking up in a hospital bed reminded of when I found myself waking up in one. I felt like I was peeing the bed and was embarrassed about it. I couldn't move or look much, so I was exploring with my hands to "assess the damage" and wondering how I was going to explain wetting the bed as an adult to whoever when I discovered the good and bad news. Good news - I hadn't wet the bed. Bad news - I had a catheter.
The author's brain injury, of course, is much more unsettling. But, if the old you has died, then it's not coming back. May as well make the best of the new you.
They really are. I’m reminded of George Miller, who created and directed the Mad Max movies. Those movies are about how cars are terrifying death machines that shred human bodies. Miller said he was “inspired” after working several years as an ER doctor, seeing the damage firsthand.
The US does rate pretty high in "traffic deaths per 100k people".
But they also lead the world in how much they drive. 8,800 kilometers per capita, versus 4,300 in Canada, 7,000 in Germany and less than 1,700 in Japan.
I'm sure there are other factors, but that would explain most of the difference vs Canada. Twice as much driving means twice as many traffic deaths per capita.
Edit: Yes, I agree the US has work to do either way.
But even if you look at road deaths per billion km driven, the US still scores 7.3 - more than twice Norway's 3, or the UK's 3.4, and still a fair bit more than all those other countries.
Changing existing towns is almost impossible. It is possible to start a new town with new structure. I want to start a town with no personal powered vehicles. It's a project I've been researching for about 4 years.
Does anyone else feel like it's almost always a pickup truck? This article^[1] that I found a while back claims occupants of a car are 2.5 times more likely to die in a collision with a pickup truck than another car.
It's an atrocity, and it's insane to me that it's almost totally absent from the public discourse.
There are no reasonable pickup truck safety regulations in the US. Pickup trucks are simply not safe vehicles for other individuals around them. Some are so large that you can't even see small children in front. [0]
The front of most pickup trucks is literally a flat wall, whereas most cars and SUVs have to design for potential pedestrian impact and whatnot. If you get hit by a pickup truck you will be pancaked, but if you get hit by a modern car you have a chance of surviving.
You can thank lawmakers acting on the whims of corporate lobbyists for this. [1] It makes my blood boil, how our elected representatives so casually throw away lives of their citizens.
90% of pickup truck owners don't actually need their pickup trucks, but are allowed to buy and drive these incredibly dangerous vehicles regardless. In turn, this causes an escalating arms race - everyone else feels the need to buy an SUV or other large vehicle. Vehicles get heavier, bigger, and deadlier. The cycle continues.
Part of the issue is that it's part of the self-image of red-blooded American manliness to own a pickup truck. It's ridiculous and childish, but owning a pickup truck is seen as cool and macho throughout large swaths of the country. It will be almost impossible to pass safety regulations against pickup trucks thanks to this population.
Because it is. Getting hit by a pickup truck is much closer to being hit by a semi than by a compact car. Not only the shape is similar, but pickup trucks can be multiple times heavier than cars.
Most people are blasé? Most people don't have a choice because they don't live in San Francisco or New York where billions are spent on infrastructure and proper city planning which accommodates pedestrians and public transportation.
It’s not about driving or not, it’s about whether you take the risks of driving seriously.
Speeding around a motorcycle while going over a hill is a good example from the article. See also: distracted driving, DWI, driving while overtired, and all sorts of other behaviors that are super common.
So many collisions are preventable if people just took driving seriously. I don’t think people are as conscious of the risks and dangers as they should be.
Billions are spent on car infrastructure everywhere. The citizens have the choice and responsibility, but they continually vote from ignorance or selfishness.
I enjoyed the wit and sense of humor of this piece. I have a serious medical condition and, yeah, perspective and priorities change after your life gets hit by a truck, whether literally or metaphorically.
It can be hard to convey what that's like and that there are bad things but also sometimes good comes out of it and you can choose to embrace the good parts of it and amplify them while continuing to try to resolve the very real problems you have been left with.
That's not really very useful. Of course you exist! You share sufficiently many properties with other things that we would say “exist” that it is more useful to consider you extant than non-existent.
What you mean might be a more useful, meaningful concept, but what you've said is kinda nonsense. If you don't exist, who wrote this comment? I'd be interested if you could elaborate.
The hands. Driven by the chemical phenomena taking place in the brain given the information it had been fed previously. Both the hands and the brain and the memories are mine but not me. The same way my finger is (I won't be less me if I loose it, neither I will if I loose a memory of something, even of my name) and my car is. I am merely the observer of all these but ok, then where this me which "merely is" is then? Nowhere because whatever a thing within my body or personality I could point to is mine. Where will that me go when I die or when the universe collapses into a singularity and booms in a next big bang - nowhere, which is exactly where it is now. Because it doesn't exist.
This is a very rough simplification though (in fact the hands, the memories etc aren't even mine if everything else in the world isn't). I had to digest this for years and observe this, excuse me for some nonsense, from different angles inside the multi-dimensional space of pure non-verbal semantic experiences perception. This can be a long way to develop this ability and I am not sure many are ready to go this way. No, I'm not a heavy psychedelic abuser, nor a new-age loon, nor depressed, nor psychopathic, I am sober, enthusiastic, generally Okay, happy and compassionate and the realization of the above only made me even more of these and helped me through the hard times.
The first step is to observe it (a pure meaning without words) when you know exactly what you want to say but can't recall a proper word in any of the languages you speak.
If I were to seriously rationalize this I would say nobody writes the comment, it is an emergent structure resulting from a very complex fractal system. Whoever is not really into this but feels curious and wants an easy explanation watch the Dr. Sapolsky's lectures on emergence in his behavioral biology course on YouTube.
I've found this concept is near impossible to share without sounding, well, like you put it, "a new-age loon".
We haven't really developed a system or language that succinctly expresses the nature of self or experience (well, I only know English. Perhaps other languages lend themselves better). For me, I find the simplest terms to be the most profound way of capturing what you said, but when I say them out loud to someone who hasn't climbed the same "context mountain" I probably sound like someone you would encounter at a drum circle in a public park (which I find nothing to be wrong with, I should add!).
If other languages had proper words right for these things, even the people for whom these languages were native would have to explain the words to the kids somehow. And the only ways to teach someone a word are either explain in simple concepts or point to the object and say "this is it". So having the words doesn't really help much. There actually are such words in Tibetan, Pali, Japanese, Chinese, Sanskrit, native American languages, etc but you won't need them once you actually know what do they really mean and knowing them won't be of much use in expressing the meanings to others who don't know so far.
As a rough (yet quite close) example: we have a word for swimming but you can't just say "swim" and see a person who never did like "aha! all I have is to swim!" yet all he has to do actually is to swim and breaking it into simpler concepts isn't a particularly fast way to teach them. I myself learnt to swim (after all the instructors with their theories failed to teach me) just by going into water and trying until I acquired a feeling of how to do it. Curiously enough, there is an easy way to instantly turn the swimming skill of by means of electric stimulation so otherwise normal person believing he can swim (because he did it so many times) would jump into water and immediately discover he doesn't remember how to.
If we consider the experiences and understanding we are discussing useful for others (I believe they can have great therapeutic value for many but also be dangerous for many) all we can do is develop and refine systems of guiding people to experience and understand these things themselves. Religions took care of this historically and Buddhism in particular has been particularly productive (and didn't lost nor hid that with time) but I believe a religion with all its mythological, mystical and dogmatic stuff is not really necessary, rational methods are possible.
Perhaps there is a mere observer, but you are not it. If you were a mere observer, then how did that observation reach your hands?
Things can exist without being fundamental components of reality. A Lego house is still a Lego house, even if it ceases to be when the bricks are separated, and has no identity separate from those bricks save for what we assign it. The identity, such that there truly is one (does “truly” even make sense here?), is partly in the arrangement, which is not a tangible thing.
> Perhaps there is a mere observer, but you are not it.
Sure, because I am not anything. I told this all is a simplification. And yes, this contradicts the statement that I am the observer. Whatever I could express in words is doomed to be just a simplified and corrupted model which can just give a hint but not tell "the truth" as it is. In fact the observer also can be pointed to and has a word for it in the Buddhist languages but actually (rather than epistemologically) dissociating from it is a particularly advanced step.
> A Lego house is still a Lego house
This is Zen. Of course everything is what it is but to truly realize this you have to go through the weird place of "nothing is what it seems" first. I believe a Zen master described his experience this way and that is quoted somewhere in Alan Watts' "The Way of Zen", more close to the end of the book than to its beginning. Albeit not a Zen master, I can confirm from my own experience, this actually is a path worth going rather than a simple truism hardly worth even saying as it seems first.
When you say you don't exist are you referring to your sense of self identity? i.e your ego, the feeling that your mind and body and all of your senses, emotions, thoughts and memories are a distinct entity?
I'm pretty sure I am neither my ego nor my body. But besides the body and the ego (the ego being a product of the body) no thing which could be reasonably called me physically exists.
I am a rational kind so even if I believed in immortal soul in the Christian sense and could imagine an ethereal projection of my body retaining my memories going to some heaven after my body death, I would still understand the heaven as a physical place existing in spaces beyond reach of today measurement instruments and scientific reasoning of today. Therefore that would still be another body of mine, made of different sort of particles, existing physically (there is no way to exist nonphysically, physicality is a synonym to existence). But not me.
Does the universe exist? If so, then the atoms that comprise your body also exist, and defining your body as a distinct object within the universe is categorical.
It isn't, it's a physical phenomenon you observe which yields information. But you don't have and should not believe everything it says, let alone believe it is you.
Theoretically you could run something GPT3-like on your personal computer (which is approximately the same kind of a part of you like a finger of yours is), train it on everything you can remember and that would be less you than your inner voice is.
Some schizophrenics apparently have particularly fluent inner voice and too little capacity to perceive it critically.
The Buddists call it https://en.m.wikipedia.org/wiki/Anatt%C4%81 Anattā. In psychonautics it’s called ego death. It can be frightening, but for me it is a hopeful, unifying and happy idea.
But the ego doesn't have to die, you can be friends, just don't take it serious :-) Experiencing having it dead for some time can help if that's what you seek, but c'mon, if you still are experiencing something - that's the ego, it is tricking you (itself) ;-)
> Ignoring the small chance that you're actually a figment of my imagination
Haha. I always figure I'm not smart enough to come up with all these people, and if I was, I'd know their thoughts in advance because they'd be part of me.
You just are not "smart enough" (don't have enough working memory and attention capacity) to fit all (or any) these people thoughts in your "observation window", you already have immense amount of information processed consciously and unconsciously in it and all around it which clouds this function of perception to the point of near-impossibility.
Some meditation techniques can let you develop nearly direct perception without ideas but as soon as you want to use this to read someone's mind that already is an idea and makes this impossible.
This doesn't really contradict the idea I expressed above. If you are the only to exist then everything else you observe also is you so you can't point to anything specific and say this is me.
At the other end of the scale, unrelated to severe trauma I truly believe we don't come back from anaesthesia entirely the same. I have no scientific basis for this belief, it's just how I feel about the experience of waking up from anaesthesia twice.
The "who am I" in this article is strong. Who is asking the questions? Is it the same "me" from before time? The other one, knew what parmesan looked like.
My uncle was noticeably not the same person after coming back from general anaesthesia. So I know what you mean, although I can't think how to sufficiently explain this to other readers who may not have experienced it.
I wonder if it's like that old sci fi philosophical conundrum of whether you'd still be the same person if you went through a teleporter that actually duplicates you.
Either Hofstadter or Daniel Dennett has written about this in "the minds eye" when a teleporting system breaks and there are two of "you" and experiences diverge from a common root. Most SF about teleporting passes over what happens to your empty husk after "you" move on. Some do many-worlds. "Waystation" by clifford simak has tanks of recycled bodygunk in the teleporting stations to make new incomers.
You're told not to drive or sign legal documents for a week after in Australia. That's a very long time to be considered "compos mentis" in my book. Brain plasticity being a "thing" and psychoactive drugs like ketamine or psylocibin being capable of encouraging brain rewiring why would you be "the same person" after that experience: I would argue that literally your brain changed. Well. Anaesthesia is not well understood and the models of what it does are unclear. You think you came back unaltered. Ask an anaesthetist about older patients and mental decline.
I felt different. I felt partially robbed of time (and I know for a fact I was alert for 20min after one, being interviewed for a drug trial, a period of time I have no recall, except what I was told by the consultant yet, somebody was answering questions...
In many cases patients receive relatively strong pain relief drugs after surgeries, such as opioids. Are you sure the recommendation you mentioned is not due to that rather than anesthesia?
What if the feeling of change is an illusion? Many people after doing shrooms think they felt unity with all life, but I am yet to see where that experience would let them better interact with fellow humans.
I would recommend Taoism type thinking for this person because there needs to be acceptance that this reduced brain capacity (or call it brain rewiring) is the way, while possible and paradoxically trying to fix it at the same time.
If you are super switched on and rely on that smartness as part of your identity that’s gonna hurt when it’s diminished. And you switch from go getter to helped person.
NPR had a story about a neurologist who had a severe stroke and lost ability to speak or hear language for several months. She said her mind went silent and heard no words.
A family member last year had a psychotic episode that lasted a couple months where they lost contact with reality and became a different person (undiagnosed schizophrenia).
After their care, they said the hardest thing is understanding who they were, and who they are now (since the medication does change their personality somewhat).
Such experiences probably are easier to deal with for people who have some experiences with mind-altering substances (psychedelics, weed, benzodiazepines, relevant supplements like 5-HTP or L-Tyrosine) and observing the effects: you behave and think visibly different than "normal you" usually do but that still are you and in some degree you can keep your behavior and judgement in line with what you consider appropriate and relevant to your values or your usual character by means of a conscious effort.
It's an interesting article but the author is insufferable. She may be suffering a TBI, but she writes a lot more like someone grappling with an emaciated ego which was once overstuffed.
One of the effects of the illness was that I essentially became stupid. I couldn’t focus on anything (even trivial activities like watching television), I couldn’t compose emails, I would get disoriented easily. It was absolutely terrifying not knowing whether or not my mind would come back. At the time, I would have preferred having a disease like cancer because at least I would know what I’m dealing with. Eventually I did start to get better. Like the author, I think I’m probably not quite back to who I was before getting sick.
A couple things I learned from my interaction with the medical system - 1. Like any other industry, 90% of medical “experts” are totally incompetent. 2. The state of diagnostics is pretty abysmal. So much of medicine is completely nonscientific guesswork. Most doctors aren’t even aware of the latest diagnostic developments in their own fields. Think about the people you know who learned Java in college and then never learned another programming language; chances are, your doctor is that kind of person.