20 ms·

Dozens of doctors over the years have rolled their eyes at me whenever I reported that my excruciating migraines were connected with flare ups in intestinal pai

Dozens of doctors over the years have rolled their eyes at me whenever I reported that my excruciating migraines were connected with flare ups in intestinal pain. Many would make passive aggressive remarks like "What?... Maybe you should have a psychiatric evaluation." At one point I decided to trust them and go along with it, resulting in years of medication and dealing with withdrawal symptoms upon deciding to quit, which they claimed did not exist at all and that I was making it up. I am happy that numerous studies like this one continue to vindicate all the things I reported to doctors over the years, although it is likely that the arrogant doctors continue to lack the introspection to realize what they did to me and many other patients, and thus admit nothing, in spite of the increasing evidence that they were flat out wrong.

MPSimmons 8y ago
Dude. Yes. I have ocular migraines on occasion, and when that happens, I know that I will have to go to the bathroom in an hour or so. It doesn't happen every time, but whenever it happens, that's what causes it. Likewise, I have PVCs (extra heartbeats) whenever I have matter going through my large intestine (I think it's the transverse segment). It's also tied to left arm pain for me, and occasional panic attacks. It's been very obvious to me that something is 'wrong' with my Vagus nerve for around 10 years, but I started getting the symptoms a few years before that. I had every kind of non-invasive heart examination I've ever heard of, up through cardiac radiology, and my heart is absolutely fine. I pass EKGs, I pass stress tests. I just sometimes have extra beats, and they're correlated to when I need to go to the bathroom.
- recondite 8y ago
  Are you me? I have the exact same symptoms, especially the left arm pain and panic attacks. Full heart checkup and nothing was found to be wrong but I always suspected it had to do with my nervous system.
  - pygy_ 8y ago
    Yup, that sounds like a badly wired myocardial pain circuit. There are well known instances, like the Markus-Gunn syndrome where the mastication commands projects onto eyelid muscles. Similar bugs may occur in other circuits. https://youtu.be/g7e2rFua0Sw?t=7s https://youtu.be/g7e2rFua0Sw?t=7s
  - superasn 8y ago
    You should read about TMS by John Sarno (see divided mind). Maybe it can help you too like it helped me. Your symptoms sound a lot like it but ofcourse you need to read it and decide.
    - Tharkun 8y ago
      Not the original grandfather, but I'm a fellow migraineur. I read Sarno's book, and found it to be unhelpful. From what I remember, the gist of it is that "unresolved emotions" cause a great deal of physical problems in some patients. That's not a theory I'm willing to trust.
- theprotocol 8y ago
  I've had very similar symptoms. After 15 years I've managed to reduce my symptoms by doing an elimination diet (apparently my intestines are sensitive to many kinds of food) and taking the FODMAP diet to its natural conclusion: reducing all things fermented and fermentable in order to reduce my dysbiotic intestinal bacteria. This means avoiding FOS, "soluble fiber," resistant starches, sugar alcohols... At some point I figured out that it was all about the intestinal microbiota, so I had decent success at reducing the dysbiosis with with caprylic acid and undecylenic acid. Intestinal bacteria, even the "good" ones, sometimes produce histamine, and always produce gas. The "bad" ones produce literal toxins. Recently I added S. Boulardii and I am now 60-70% improved as long as I maintain this admittedly difficult diet (while making sure to avoid vitamin, mineral and fat deficiencies). My life has been hell since the age of 11. I was "drunk" and sick to my stomach for decades before the trial and error paid off. The doctors I saw kicked me while I was down. It is quite a dark realization that the industry sucks for entire classes of illness, although I do recognize its merits in treating stereotypically presenting illnesses.
  - abledon 8y ago
    How is your core strength ? Ie can you do v-ups balancing on hands? 30 pull ups ? I found digestion and stomach issues can be resolved with a good diet and physical training regime. Also try and find a teacher who can show you nauli , exercise where you churn your stomach innards , acting as internal massage and strengthens pelvic floor. Stop wasting your time with doctors — up to you to self experiment since you know yourself best
pygy_ 8y ago
Edit: @dang not sure how this happend, but editing this comment lead to another comment (https://news.ycombinator.com/item?id=18049743 https://news.ycombinator.com/item?id=18049743) being created in this thread.
pygy_ 8y ago
There's a catastrophic "the map is the territory" mentality in the medical world that leads to that kind of attitude. Many (most?) doctors work as if their knowledge was exact and exhaustive, and every symptom that's not in the book is binned as psychosomatic or psychiatric, and basically blamed on the patient. Paired with the fact that many doctors don't understand that credibly behaving as if the patient's well-being is important for the therapeutic relationship (the social part of the placebo effect, health being a mean, not an end), and you understand why BS alternative medicines are so popular.
- theprotocol 8y ago
  I agree. I think it's OK to be flawed, and it's even OK not to know your limitations. But what's not acceptable is the attitude. Many of the doctors I've seen act like "pshhh, get a load of this rube!" whenever I open my mouth. They mutter something about patients not being supposed to read things on the Internet (I read because I'm desperate and nobody has managed to help me, perhaps?). Many act like "oh, you read medical articles? Great you can help yourself then, I'm out." although they won't say that outright, but essentially they stop trying the second they find out.
  - pygy_ 8y ago
    Yes, ignoring if not mocking real patient expertise is yet another issue that's pretty prevalent. Patient knowledge may be accepted for diseases that are rare but well know, but for stuff in foreign territory you'll find that kind of attitude.
  - threeseed 8y ago
    1. You pay to see a doctor. You weren't forced to. You chose to. 2. You tell them you read about your condition on the internet. Even though the majority of the health information on the internet is utter garbage. 3. You then get offended when they tell you to not trust what is on the internet. Although again they are 100% spot on here. 4. You are confused why they are dismissive of you. When you chose to see them, paid money for their expert advice and then wanted to dismiss it in favour of your expert advice. Except that your expert advice = 5 mins of Google and theirs = 20 years of schooling. I really do feel really sorry for GPs to have to go through this 100x a day.
ilove_banh_mi 8y ago
Unfortunately medical doctors are not scientists. They do not collect new evidence, they just try to fit their observations (the symptoms) in the straight-jacket of the catalog of drugs or surgery they are aware of (the cure). Sometimes they choose to ignore symptoms you report, and sometimes they recommend a cure that can have terrible secondary effects without saying one word about those. If you make the mistake of believing that they are scientists, and present your own observations of possible cause and effect, they will either ignore you or mock you. I have so many examples of my own and close relatives, from the glaringly perceptual to the more subtle and personal, and have very little respect left for their profession and insane costs.
- pygy_ 8y ago
  I have a medical degree (but I do not practice medicine), and this is spot on. I wouldn't generalize it to the entire profession, but many doctors behave as you describe. Generalists tend to be more humble w.r.t. not knowing everything, but specialists are often bad offenders.
- Razengan 8y ago
  Doctors in that sense, and similarly lawyers, seem like the best candidates to be replaced by ML/AI. Why aren't we on this yet? (or are we?) That would be one of the best applications of AI, with wide benefits for civilians the world over but also causing social upheaval and thus facing resistance from the humans it attempts to supplant.
  - Jgoure 8y ago
    Facebook announced that they are using ML to fix compilation errors just yesterday. They said they were contracting out companies to build ASICS for the AI. We are a long way from AI making good medical decisions.
  - threeseed 8y ago
    1. Because the health industry is about as regulated as it gets so even if ML/AI is possible there is zero chance of it being allowed to replace the advice of a doctor. 2. Because most people like seeing their doctor and talking to someone about their issues. There isn't exactly an appetite for disruption here.
glenngillen 8y ago
My wife suffered the same. She consulted a nutritionist who after hearing her symptoms suggested, with much suspicion from me, that she try the elimination diet from the Royal Prince Alfred Hospital’s allergy unit: https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/ffintro.html https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/... And now we know that she can’t ingest a high level of saicilates without complications. I still struggle to reason about what foods prepared in what ways meet the criteria (the book at the URL above maps it all out, I’ve just been unable to build a mental model/pattern match in the same way I can on carbs vs proteins) but I no longer have any doubt that these are the triggers. Hopefully the same process helps you out too.
- wavegeek 8y ago
  The RPAH clinic was life changing for several people I know. including me. I think food/additive intolerances are a vastly underrated problem. A lot of people think they cannot tolerate "gluten" or some other thing when, often but not always, it is the additives in foods that are the problem.
  - m_fayer 8y ago
    Or complex sugars (FODMAPs), a good overview here: https://gut.bmj.com/content/65/1/169 https://gut.bmj.com/content/65/1/169
nabakin 8y ago
Problem is most people aren't reliable sources of information due to confirmation bias. No doctor should dismiss someone and act like they know everything, but they may not be able act on subjective information.
kensai 8y ago
I am sorry, but probably the doctors you were seeing were simply incompetent. Auras in migraine can be almost anything, even intestinal pain (or diarrhea in some cases). Also, the paper simply describes a new observation in a very well-known fact. Nonetheless, that the vagus nerve IS connected with the gut is known probably known since Vesalius' time. The paper does not describe or explain your intestinal pain, neither gives you any kind of "I told you so" right against your physicians. Arrogant physicians is one thing, incompetent is another.
- theprotocol 8y ago
  I've literally seen more than 50 doctors for this over the years. I would estimate about 4 or 5 were great people who actually made a real effort to help me. The rest were both arrogant and incompetent, and some have even caused me severe iatrogenic harm.
tw1010 8y ago
You'd probably do yourself a favour by avoiding "good guy, bad guy" thinking. In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job. What is a resource efficient way to maximize the utility of the sum of all patients? Is it, (a) invest an exorbitant amount of time on one patient whose symptoms isn't supported by very well funded (much more highly funded and rigorous than what you, the doctor, could ever invest on your own) research (which is probably a true positive only a small percentage of the time), at the expense of other patients, or (b) trust the current scientific consensus (at the small but occasional risk of being wrong)? It's not "arrogance", and you shouldn't think of what's happening now as "vindication". It's just cost efficiency at the (unavoidable) risk of occasionally being wrong.
- theprotocol 8y ago
  >In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job. Almost everything I hear from clients I consider to be wrong. And I politely explain to them why that is, I get into their assumptions and reasons for thinking what they do, and try to convince them of why it is not the case. I never mock, I never suggest that they are idiots, and were I to start shirking if they disagreed with me, I wouldn't then make them pay while I continued to shirk.
bitL 8y ago
When you were at a university (without grade inflation), how big was the portion of students you felt truly mastered each subject? 5%? Would you expect something different with MDs? Your doctors are statistically most likely average or below average, so is their advice. They likely graduated by memorizing a snapshot of medical knowledge that was current when they graduated, with updates coming in with far lower weight. If you want great advice, get two persons - one a recent smart graduate, the other experienced one with great stats. I hope at some point many of those murky decisions could be automated away with machine learning soon.
vfc1 8y ago
It has been known for decades but largely ignored by the general population, that doctors themselves are one of the leading causes of death in the united states. We are talking about a couple of millions of unnecessary deaths in a 16 year span. Here is a source, that references studies - https://nutritionfacts.org/2017/09/21/how-doctors-responded-to-being-named-a-leading-killer/ https://nutritionfacts.org/2017/09/21/how-doctors-responded-... The truth is that medicine is a very conservative profession, as it probably should be, we don't want to be guinea pigs of new techniques ourselves. But many doctors are just not up to date with the latest research and just keep medicating you using the same stuff they learned in university 20 years ago, which was itself already out of date by then by easily 10 years. Not all doctors are like that, but many. You should do your own research on the internet for those types of ailments, confirm that the sources are trustworthy and adapt your diet, try different things. Try to find a specialist on those issues, it could be an auto-immune disease. But don't overly trust some random doctor telling you that you don't have anything when you have those types of symptoms.
- gaius 8y ago
  that doctors themselves are one of the leading causes of death in the united states. Didn’t Machiavelli say the best way to assassinate someone was to assign them a private physician? It’s been going on ever since there were doctors.
amelius 8y ago
I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course).
- theprotocol 8y ago
  >I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course). This is like the ultimate way to get mocked by the kinds of doctors I described.
zero_intp 8y ago
Hopkins has a gastroneuro department. Abdominal Migraine.
YeGoblynQueenne 8y ago
I'm sorry but I don't see how the two studies referenced in the article "vindicate" your complaints. The study that is the main subject of the article found that a) the enteroendocrine cells of mice send signals to vagal neurons and b) in a petri dish, enteroendocrine cells form connections with vagal neurons. Neither of the two points seem to be connected with migraines, specifically, and they remain the results of one study, in vitro and in an animal model. It seems to me it's too early to feel vindicated about anything.
- theprotocol 8y ago
  No single study in isolation would vindicate me. I mentioned above that numerous studies over a span of years continue to paint a picture that increasingly vindicates me, in the sense that what I reported to some arrogant doctors was not as laughable as they pretended it was.
  - YeGoblynQueenne 8y ago
    Out of curiousity, what are some examples of other studies, that "vindicate" you? For the record, I find it dangerous to feel "vindicated" about any personal dispute on the basis of any number of articles in the scientific press, especially so if they're in a field that you are not specialising in. It's very easy for your feelings to get in the way and push you towards all sorts of misunderstandings of what is claimed in those publications.
    - theprotocol 8y ago
      I don't have them handy. It's ok if you don't believe me. It's certainly dangerous with regard to cognitive bias, but I have backing from an excellent doctor who has noted my results experimentally, so I am convinced of what I'm saying. edit: I would also stress that a lot of things that many of my former doctors were skeptical about were mere symptom reports. I think I would know when my intestines hurt, yet some doctors acted like this was malingering, or a "panic attack" when really I have food allergies (but they wouldn't know that since they gave up from the get go).
obituary_latte 8y ago
I have definitely also noticed strange gut reactions as I endure the flashing-lights beginning stage of my migraines. I always attributed it to “nervousness/butterflies”.
ianai 8y ago
I first heard of the stomach/brain connection to migraines from my neurologist. She described it as a lesser understood area of neurology. Having said that, I know all too well how unhelpful the wrong doctors can be for an issue. When I had my first round of cluster migraines I was treated as having a very bad sinus infection, for months. I’m lucky I made it through that semester in college.
amelius 8y ago
One problem is that your doctor has no incentive to treat rare diseases. If they can cure 99.9% of people, then they are king. The .1% of people with a rare disease will require extensive testing that costs a lot of time and money, and will only make your doc look bad on various performance evaluation metrics.
- ItsMe000001 8y ago
  It's not just rare diseases. Anything that cannot easily be diagnosed. They end up treating the symptoms because finding what the cause is is nigh impossible for a real-world doctor with a full waiting room and a limited budget. If someone thinks I'm just rambling, I took medical courses worth well over a thousand lecture hours (incl. biology, bio.chem and other stuff needed as a basis), plus I myself was one such patient and I spent years on it - together with a specialist I finally found, a researcher at a university clinic. Anything that has an underlying cause that is not itself an obvious disease is part of that category. For example, "simple stuff" like psoriasis (mine went away after treating the cause), acid reflux (usually no concrete cause is found, only guesses - weight, food, only in rare cases where there is an anatomical problem as the immediately visible cause is one determined), lots of other "fuzzy" things that are not (immediately) disabling conditions. I'm an example. I was told by a professor of gastroenterology that I would have to take PPIs forever. His diagnosis was completely in line with all recommendations given my problems - but it felt completely wrong on all levels. I did my own research and found the true cause, looked for a specialist, got it confirmed, treated - and I proved that professor and a few other doctors wrong many times over. I have no hard feelings at all though, I'd still go back to that professor if I needed a professional opinion. I just interpret it very different than before though and don't take as the ultimate answer. I'm actually somewhat satisfied with modern medicine despite the fact that it let me down big time had I not spent an extraordinary amount of effort myself - after all, when you do invest that effort, never in the history of mankind have their been so many options.
  - amelius 8y ago
    You say that you had to spend a great amount of effort yourself. Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)? I'm ok with modern medicine as far as treatment goes. However, the fact that diagnostics are not commercially available is somewhat maddening. I understand that it's not for everyone, but that doesn't change my point.
codyt 8y ago
Have you seen any functional medicine doctors? Not "naturopaths" or chiropractors, but an actual functional medicine MD? (I make the distinction because many will scoff at naturopaths, and also because that world is full of many pretenders who give functional medicine a bad name.) Gut health and the mind<->gut connection have been well accepted facts in functional medicine for many years. First anecdotally, and now with more and more scientifically backed research. I feel your pain regarding conventional doctors not understanding, or not caring to understand that health issues can be solved with tools other than their prescription pad or an invasive surgery. That paradigm is slowly changing; ie. the reluctant mainstream acceptance of things like probiotics for gut health. I wonder what the more critically minded audience of HN thinks of functional medicine? If you haven't looked up any functional doctors, a good place to start is Dr. Mark Hyman, who is the director of functional medicine at the Cleveland Clinic. At first glance, his books and persona can seem a little "new agey" or bullshit, but if you listen to him on more technical health podcasts, you can see that he is a very intelligent person rooted in scientific research and trial and error in his medicinal practice.
nnain 8y ago
You're not alone. It affects me a lot too. On the positive side, my gut sends a sos anytime I mess up my diet, so over time my food habits have improved just by avoiding certain items. Food preservatives (in packaged foods) affect me much more than people around me. Missing breakfast or anything that gives me acidity triggers it. I always have had a low tolerance for alcohol.
justanotherjoe 8y ago
anecdotal, but once, after a 2-week period of cold and antibiotics, followed by 1-week worth constipation and and painful release of bowels, i experienced a very vivid depression (anxiety, fear, it's a bad, persistent feeling. NOTHING i did managed to shake it off). I'm a very introspective person in general, and while my brain was telling me it's because 'i'm worthless', i managed to convince myself that something was happening in my digestive system. My first guess was some kind of a laceration (due to constipation) in the colon. I mean, why not? When you are happy, you feel butterflies in your stomach, right? But at that time, everything that 'usually' bring butterflies to my stomach, ended up doing the opposite. That's how i thought about it then. I was also aware we have a lot of neurons in our gut. Note, that, while i made this connection, it was not at all obvious it had anything to do with the gut at all, it all started as a hypothesis. Anyway, I swallowed paracetamol, which is used to treat fever and pain. And the difference was clear as day, the bad feeling stopped. At least for 2 hours. But what happened next cleared me of any doubt that the source is somewhere in my gut. I was waiting in a reclining chair in my car, feeling bad because the effect of paracetamol had subsided. That's when i discovered that 'whether i feel bad or not depends entirely on the angle of the reclining chair i was on'. I tested it, if i raised it to such degree, i will start feeling bad, and if i lower it to such degree, i will stop feeling bad. It was so weird to me. Anyway the bad feeling persisted for like a week after, then i was back to my usual self. However, had i internalized it, I'm sure it would have a long, and destructive, tail.
arountheworld 8y ago
This is typical for taxpayer-funded healthcare, where there is no accountability and doctors know they can do almost whatever they want and there is nothing that you can do. It really hurts to think how much money in taxes you pay and what you get in exchange. I wish there was at least a system where you could remove such doctors from practising.
Gatsky 8y ago
Sorry you have had this experience. I really don't know how a doctor manages to be arrogant. I've been doing medicine for 18 years, and I am surprised and humbled intellectually every day. This is of course what makes the job so interesting and rewarding. But it has certainly never inspired the sense that I know anywhere near 'everything', or that my accumulated knowledge and experience were somehow more important than the individual experience of the patient. Doctors are not assholes. To some, this will be a controversial statement. But they do fail, and they do make mistakes. The biggest mistake a doctor can make is not taking responsibility for the patient. This is fundamentally what doctors do. They might convince themselves that they actually do something else, but I am absolutely certain that taking responsibility for a patient is the core and inescapable act of medicine. And almost always, this is what a patient wants, more than anything else (this is way an algorithm will never replace doctors, but that is a another discussion). All my errors and failures stem from ignoring or passing up this responsibility. Of course there are reasons why this occurred - I was too busy, too tired, didn't think I could make any difference, it was someone else's job etc. There are a litany of rationalisations. But at the end of the day, taking responsibility creates the clarity, freedom and trust that is necessary to have a useful therapeutic relationship. The point is that even if you can't do anything to help the patient, even if their condition is totally untreatable and their suffering immense (as is all too often the case), you will always still help them in some way if you take responsibility. I don't know all the details of what happened to you obviously, but in the framework above, the problem you have is finding a doctor who will take responsibility for your condition. Too often, the doctor is 'set up to fail' in this regard, because they have appointments every 10 minutes, have seen 20 people already today, are tired, hungry, dehydrated, pissed off, burnt out, depressed, sleep deprived etc etc. How can they take responsibility for anything in these impoverished conditions? But this is their fault - as a professional, they must find a way to do the needful, however difficult. I am tapping all this out because I think that doctors and patients don't understand this basic idea about taking responsibility. Some doctors seem to think it is their job to do 15 colonoscopies a day, or to seem clever, or to impress the secretarial staff, or to look eminent in a white coat on the ward round, or any number of peripheral and totally irrelevant things. Actually, for serious conditions, I think a patient should ask their doctor to take responsibility explicitly. "I have this problem, and I am looking for someone to take responsibility for treating it." If a doctor says "yes" in response to this question, even if they seem a bit unsure, you have probably found someone that can help you. If they look baffled, it's time to move on, don't waste your time. You will only end up frustrated and angry.
kishoresurana 8y ago
Also there is a connection from your hands to your gut. What if I tell you that there is a simple hand posture will take all the gas from your body? Read about Apana vayu mudra. Do it for 10 minutes when you have a gas trouble and see what happens. Hint: you can’t stop burping and farting. Some random site I found online which has a hand picture of how to do the mudra: http://www.healthmelody.com/heart-health/apana-vayu-mudra-heart-blood-pressure/ http://www.healthmelody.com/heart-health/apana-vayu-mudra-he...

MPSimmons 8y ago

Dude. Yes. I have ocular migraines on occasion, and when that happens, I know that I will have to go to the bathroom in an hour or so. It doesn't happen every time, but whenever it happens, that's what causes it. Likewise, I have PVCs (extra heartbeats) whenever I have matter going through my large intestine (I think it's the transverse segment). It's also tied to left arm pain for me, and occasional panic attacks. It's been very obvious to me that something is 'wrong' with my Vagus nerve for around 10 years, but I started getting the symptoms a few years before that. I had every kind of non-invasive heart examination I've ever heard of, up through cardiac radiology, and my heart is absolutely fine. I pass EKGs, I pass stress tests. I just sometimes have extra beats, and they're correlated to when I need to go to the bathroom.

recondite 8y ago
Are you me? I have the exact same symptoms, especially the left arm pain and panic attacks. Full heart checkup and nothing was found to be wrong but I always suspected it had to do with my nervous system.
- pygy_ 8y ago
  Yup, that sounds like a badly wired myocardial pain circuit. There are well known instances, like the Markus-Gunn syndrome where the mastication commands projects onto eyelid muscles. Similar bugs may occur in other circuits. https://youtu.be/g7e2rFua0Sw?t=7s https://youtu.be/g7e2rFua0Sw?t=7s
- superasn 8y ago
  You should read about TMS by John Sarno (see divided mind). Maybe it can help you too like it helped me. Your symptoms sound a lot like it but ofcourse you need to read it and decide.
  - Tharkun 8y ago
    Not the original grandfather, but I'm a fellow migraineur. I read Sarno's book, and found it to be unhelpful. From what I remember, the gist of it is that "unresolved emotions" cause a great deal of physical problems in some patients. That's not a theory I'm willing to trust.
theprotocol 8y ago
I've had very similar symptoms. After 15 years I've managed to reduce my symptoms by doing an elimination diet (apparently my intestines are sensitive to many kinds of food) and taking the FODMAP diet to its natural conclusion: reducing all things fermented and fermentable in order to reduce my dysbiotic intestinal bacteria. This means avoiding FOS, "soluble fiber," resistant starches, sugar alcohols... At some point I figured out that it was all about the intestinal microbiota, so I had decent success at reducing the dysbiosis with with caprylic acid and undecylenic acid. Intestinal bacteria, even the "good" ones, sometimes produce histamine, and always produce gas. The "bad" ones produce literal toxins. Recently I added S. Boulardii and I am now 60-70% improved as long as I maintain this admittedly difficult diet (while making sure to avoid vitamin, mineral and fat deficiencies). My life has been hell since the age of 11. I was "drunk" and sick to my stomach for decades before the trial and error paid off. The doctors I saw kicked me while I was down. It is quite a dark realization that the industry sucks for entire classes of illness, although I do recognize its merits in treating stereotypically presenting illnesses.
- abledon 8y ago
  How is your core strength ? Ie can you do v-ups balancing on hands? 30 pull ups ? I found digestion and stomach issues can be resolved with a good diet and physical training regime. Also try and find a teacher who can show you nauli , exercise where you churn your stomach innards , acting as internal massage and strengthens pelvic floor. Stop wasting your time with doctors — up to you to self experiment since you know yourself best

pygy_ 8y ago

Edit: @dang not sure how this happend, but editing this comment lead to another comment (https://news.ycombinator.com/item?id=18049743 https://news.ycombinator.com/item?id=18049743) being created in this thread.

pygy_ 8y ago

There's a catastrophic "the map is the territory" mentality in the medical world that leads to that kind of attitude. Many (most?) doctors work as if their knowledge was exact and exhaustive, and every symptom that's not in the book is binned as psychosomatic or psychiatric, and basically blamed on the patient. Paired with the fact that many doctors don't understand that credibly behaving as if the patient's well-being is important for the therapeutic relationship (the social part of the placebo effect, health being a mean, not an end), and you understand why BS alternative medicines are so popular.

theprotocol 8y ago
I agree. I think it's OK to be flawed, and it's even OK not to know your limitations. But what's not acceptable is the attitude. Many of the doctors I've seen act like "pshhh, get a load of this rube!" whenever I open my mouth. They mutter something about patients not being supposed to read things on the Internet (I read because I'm desperate and nobody has managed to help me, perhaps?). Many act like "oh, you read medical articles? Great you can help yourself then, I'm out." although they won't say that outright, but essentially they stop trying the second they find out.
- pygy_ 8y ago
  Yes, ignoring if not mocking real patient expertise is yet another issue that's pretty prevalent. Patient knowledge may be accepted for diseases that are rare but well know, but for stuff in foreign territory you'll find that kind of attitude.
- threeseed 8y ago
  1. You pay to see a doctor. You weren't forced to. You chose to. 2. You tell them you read about your condition on the internet. Even though the majority of the health information on the internet is utter garbage. 3. You then get offended when they tell you to not trust what is on the internet. Although again they are 100% spot on here. 4. You are confused why they are dismissive of you. When you chose to see them, paid money for their expert advice and then wanted to dismiss it in favour of your expert advice. Except that your expert advice = 5 mins of Google and theirs = 20 years of schooling. I really do feel really sorry for GPs to have to go through this 100x a day.

ilove_banh_mi 8y ago

Unfortunately medical doctors are not scientists. They do not collect new evidence, they just try to fit their observations (the symptoms) in the straight-jacket of the catalog of drugs or surgery they are aware of (the cure). Sometimes they choose to ignore symptoms you report, and sometimes they recommend a cure that can have terrible secondary effects without saying one word about those. If you make the mistake of believing that they are scientists, and present your own observations of possible cause and effect, they will either ignore you or mock you. I have so many examples of my own and close relatives, from the glaringly perceptual to the more subtle and personal, and have very little respect left for their profession and insane costs.

pygy_ 8y ago
I have a medical degree (but I do not practice medicine), and this is spot on. I wouldn't generalize it to the entire profession, but many doctors behave as you describe. Generalists tend to be more humble w.r.t. not knowing everything, but specialists are often bad offenders.
Razengan 8y ago
Doctors in that sense, and similarly lawyers, seem like the best candidates to be replaced by ML/AI. Why aren't we on this yet? (or are we?) That would be one of the best applications of AI, with wide benefits for civilians the world over but also causing social upheaval and thus facing resistance from the humans it attempts to supplant.
- Jgoure 8y ago
  Facebook announced that they are using ML to fix compilation errors just yesterday. They said they were contracting out companies to build ASICS for the AI. We are a long way from AI making good medical decisions.
- threeseed 8y ago
  1. Because the health industry is about as regulated as it gets so even if ML/AI is possible there is zero chance of it being allowed to replace the advice of a doctor. 2. Because most people like seeing their doctor and talking to someone about their issues. There isn't exactly an appetite for disruption here.

glenngillen 8y ago

My wife suffered the same. She consulted a nutritionist who after hearing her symptoms suggested, with much suspicion from me, that she try the elimination diet from the Royal Prince Alfred Hospital’s allergy unit: https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/ffintro.html https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/... And now we know that she can’t ingest a high level of saicilates without complications. I still struggle to reason about what foods prepared in what ways meet the criteria (the book at the URL above maps it all out, I’ve just been unable to build a mental model/pattern match in the same way I can on carbs vs proteins) but I no longer have any doubt that these are the triggers. Hopefully the same process helps you out too.

wavegeek 8y ago
The RPAH clinic was life changing for several people I know. including me. I think food/additive intolerances are a vastly underrated problem. A lot of people think they cannot tolerate "gluten" or some other thing when, often but not always, it is the additives in foods that are the problem.
- m_fayer 8y ago
  Or complex sugars (FODMAPs), a good overview here: https://gut.bmj.com/content/65/1/169 https://gut.bmj.com/content/65/1/169

nabakin 8y ago

Problem is most people aren't reliable sources of information due to confirmation bias. No doctor should dismiss someone and act like they know everything, but they may not be able act on subjective information.

kensai 8y ago

I am sorry, but probably the doctors you were seeing were simply incompetent. Auras in migraine can be almost anything, even intestinal pain (or diarrhea in some cases). Also, the paper simply describes a new observation in a very well-known fact. Nonetheless, that the vagus nerve IS connected with the gut is known probably known since Vesalius' time. The paper does not describe or explain your intestinal pain, neither gives you any kind of "I told you so" right against your physicians. Arrogant physicians is one thing, incompetent is another.

theprotocol 8y ago
I've literally seen more than 50 doctors for this over the years. I would estimate about 4 or 5 were great people who actually made a real effort to help me. The rest were both arrogant and incompetent, and some have even caused me severe iatrogenic harm.

tw1010 8y ago

You'd probably do yourself a favour by avoiding "good guy, bad guy" thinking. In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job. What is a resource efficient way to maximize the utility of the sum of all patients? Is it, (a) invest an exorbitant amount of time on one patient whose symptoms isn't supported by very well funded (much more highly funded and rigorous than what you, the doctor, could ever invest on your own) research (which is probably a true positive only a small percentage of the time), at the expense of other patients, or (b) trust the current scientific consensus (at the small but occasional risk of being wrong)? It's not "arrogance", and you shouldn't think of what's happening now as "vindication". It's just cost efficiency at the (unavoidable) risk of occasionally being wrong.

theprotocol 8y ago
>In their position, wouldn't you act the same way? Doctors have a finite amount of energy and time to spend on their job. Almost everything I hear from clients I consider to be wrong. And I politely explain to them why that is, I get into their assumptions and reasons for thinking what they do, and try to convince them of why it is not the case. I never mock, I never suggest that they are idiots, and were I to start shirking if they disagreed with me, I wouldn't then make them pay while I continued to shirk.

bitL 8y ago

When you were at a university (without grade inflation), how big was the portion of students you felt truly mastered each subject? 5%? Would you expect something different with MDs? Your doctors are statistically most likely average or below average, so is their advice. They likely graduated by memorizing a snapshot of medical knowledge that was current when they graduated, with updates coming in with far lower weight. If you want great advice, get two persons - one a recent smart graduate, the other experienced one with great stats. I hope at some point many of those murky decisions could be automated away with machine learning soon.

vfc1 8y ago

It has been known for decades but largely ignored by the general population, that doctors themselves are one of the leading causes of death in the united states. We are talking about a couple of millions of unnecessary deaths in a 16 year span. Here is a source, that references studies - https://nutritionfacts.org/2017/09/21/how-doctors-responded-to-being-named-a-leading-killer/ https://nutritionfacts.org/2017/09/21/how-doctors-responded-... The truth is that medicine is a very conservative profession, as it probably should be, we don't want to be guinea pigs of new techniques ourselves. But many doctors are just not up to date with the latest research and just keep medicating you using the same stuff they learned in university 20 years ago, which was itself already out of date by then by easily 10 years. Not all doctors are like that, but many. You should do your own research on the internet for those types of ailments, confirm that the sources are trustworthy and adapt your diet, try different things. Try to find a specialist on those issues, it could be an auto-immune disease. But don't overly trust some random doctor telling you that you don't have anything when you have those types of symptoms.

gaius 8y ago
that doctors themselves are one of the leading causes of death in the united states. Didn’t Machiavelli say the best way to assassinate someone was to assign them a private physician? It’s been going on ever since there were doctors.

amelius 8y ago

I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course).

theprotocol 8y ago
>I guess the best way is to force an analytical approach on your treatment. Ask your doctor a list of all possible causes of your symptoms. Ask them to assign probabilities to each of them, and a score of 1-10 that indicates difficulty of treatment, risk and cost. Then sort the list with your doctor, and work down the list (this last part will take time of course). This is like the ultimate way to get mocked by the kinds of doctors I described.

zero_intp 8y ago

Hopkins has a gastroneuro department. Abdominal Migraine.

YeGoblynQueenne 8y ago

I'm sorry but I don't see how the two studies referenced in the article "vindicate" your complaints. The study that is the main subject of the article found that a) the enteroendocrine cells of mice send signals to vagal neurons and b) in a petri dish, enteroendocrine cells form connections with vagal neurons. Neither of the two points seem to be connected with migraines, specifically, and they remain the results of one study, in vitro and in an animal model. It seems to me it's too early to feel vindicated about anything.

theprotocol 8y ago
No single study in isolation would vindicate me. I mentioned above that numerous studies over a span of years continue to paint a picture that increasingly vindicates me, in the sense that what I reported to some arrogant doctors was not as laughable as they pretended it was.
- YeGoblynQueenne 8y ago
  Out of curiousity, what are some examples of other studies, that "vindicate" you? For the record, I find it dangerous to feel "vindicated" about any personal dispute on the basis of any number of articles in the scientific press, especially so if they're in a field that you are not specialising in. It's very easy for your feelings to get in the way and push you towards all sorts of misunderstandings of what is claimed in those publications.
  - theprotocol 8y ago
    I don't have them handy. It's ok if you don't believe me. It's certainly dangerous with regard to cognitive bias, but I have backing from an excellent doctor who has noted my results experimentally, so I am convinced of what I'm saying. edit: I would also stress that a lot of things that many of my former doctors were skeptical about were mere symptom reports. I think I would know when my intestines hurt, yet some doctors acted like this was malingering, or a "panic attack" when really I have food allergies (but they wouldn't know that since they gave up from the get go).

obituary_latte 8y ago

I have definitely also noticed strange gut reactions as I endure the flashing-lights beginning stage of my migraines. I always attributed it to “nervousness/butterflies”.

ianai 8y ago

I first heard of the stomach/brain connection to migraines from my neurologist. She described it as a lesser understood area of neurology. Having said that, I know all too well how unhelpful the wrong doctors can be for an issue. When I had my first round of cluster migraines I was treated as having a very bad sinus infection, for months. I’m lucky I made it through that semester in college.

amelius 8y ago

One problem is that your doctor has no incentive to treat rare diseases. If they can cure 99.9% of people, then they are king. The .1% of people with a rare disease will require extensive testing that costs a lot of time and money, and will only make your doc look bad on various performance evaluation metrics.

ItsMe000001 8y ago
It's not just rare diseases. Anything that cannot easily be diagnosed. They end up treating the symptoms because finding what the cause is is nigh impossible for a real-world doctor with a full waiting room and a limited budget. If someone thinks I'm just rambling, I took medical courses worth well over a thousand lecture hours (incl. biology, bio.chem and other stuff needed as a basis), plus I myself was one such patient and I spent years on it - together with a specialist I finally found, a researcher at a university clinic. Anything that has an underlying cause that is not itself an obvious disease is part of that category. For example, "simple stuff" like psoriasis (mine went away after treating the cause), acid reflux (usually no concrete cause is found, only guesses - weight, food, only in rare cases where there is an anatomical problem as the immediately visible cause is one determined), lots of other "fuzzy" things that are not (immediately) disabling conditions. I'm an example. I was told by a professor of gastroenterology that I would have to take PPIs forever. His diagnosis was completely in line with all recommendations given my problems - but it felt completely wrong on all levels. I did my own research and found the true cause, looked for a specialist, got it confirmed, treated - and I proved that professor and a few other doctors wrong many times over. I have no hard feelings at all though, I'd still go back to that professor if I needed a professional opinion. I just interpret it very different than before though and don't take as the ultimate answer. I'm actually somewhat satisfied with modern medicine despite the fact that it let me down big time had I not spent an extraordinary amount of effort myself - after all, when you do invest that effort, never in the history of mankind have their been so many options.
- amelius 8y ago
  You say that you had to spend a great amount of effort yourself. Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)? I'm ok with modern medicine as far as treatment goes. However, the fact that diagnostics are not commercially available is somewhat maddening. I understand that it's not for everyone, but that doesn't change my point.

codyt 8y ago

Have you seen any functional medicine doctors? Not "naturopaths" or chiropractors, but an actual functional medicine MD? (I make the distinction because many will scoff at naturopaths, and also because that world is full of many pretenders who give functional medicine a bad name.) Gut health and the mind<->gut connection have been well accepted facts in functional medicine for many years. First anecdotally, and now with more and more scientifically backed research. I feel your pain regarding conventional doctors not understanding, or not caring to understand that health issues can be solved with tools other than their prescription pad or an invasive surgery. That paradigm is slowly changing; ie. the reluctant mainstream acceptance of things like probiotics for gut health. I wonder what the more critically minded audience of HN thinks of functional medicine? If you haven't looked up any functional doctors, a good place to start is Dr. Mark Hyman, who is the director of functional medicine at the Cleveland Clinic. At first glance, his books and persona can seem a little "new agey" or bullshit, but if you listen to him on more technical health podcasts, you can see that he is a very intelligent person rooted in scientific research and trial and error in his medicinal practice.

nnain 8y ago

You're not alone. It affects me a lot too. On the positive side, my gut sends a sos anytime I mess up my diet, so over time my food habits have improved just by avoiding certain items. Food preservatives (in packaged foods) affect me much more than people around me. Missing breakfast or anything that gives me acidity triggers it. I always have had a low tolerance for alcohol.

justanotherjoe 8y ago

anecdotal, but once, after a 2-week period of cold and antibiotics, followed by 1-week worth constipation and and painful release of bowels, i experienced a very vivid depression (anxiety, fear, it's a bad, persistent feeling. NOTHING i did managed to shake it off). I'm a very introspective person in general, and while my brain was telling me it's because 'i'm worthless', i managed to convince myself that something was happening in my digestive system. My first guess was some kind of a laceration (due to constipation) in the colon. I mean, why not? When you are happy, you feel butterflies in your stomach, right? But at that time, everything that 'usually' bring butterflies to my stomach, ended up doing the opposite. That's how i thought about it then. I was also aware we have a lot of neurons in our gut. Note, that, while i made this connection, it was not at all obvious it had anything to do with the gut at all, it all started as a hypothesis. Anyway, I swallowed paracetamol, which is used to treat fever and pain. And the difference was clear as day, the bad feeling stopped. At least for 2 hours. But what happened next cleared me of any doubt that the source is somewhere in my gut. I was waiting in a reclining chair in my car, feeling bad because the effect of paracetamol had subsided. That's when i discovered that 'whether i feel bad or not depends entirely on the angle of the reclining chair i was on'. I tested it, if i raised it to such degree, i will start feeling bad, and if i lower it to such degree, i will stop feeling bad. It was so weird to me. Anyway the bad feeling persisted for like a week after, then i was back to my usual self. However, had i internalized it, I'm sure it would have a long, and destructive, tail.

arountheworld 8y ago

This is typical for taxpayer-funded healthcare, where there is no accountability and doctors know they can do almost whatever they want and there is nothing that you can do. It really hurts to think how much money in taxes you pay and what you get in exchange. I wish there was at least a system where you could remove such doctors from practising.

Gatsky 8y ago

Sorry you have had this experience. I really don't know how a doctor manages to be arrogant. I've been doing medicine for 18 years, and I am surprised and humbled intellectually every day. This is of course what makes the job so interesting and rewarding. But it has certainly never inspired the sense that I know anywhere near 'everything', or that my accumulated knowledge and experience were somehow more important than the individual experience of the patient. Doctors are not assholes. To some, this will be a controversial statement. But they do fail, and they do make mistakes. The biggest mistake a doctor can make is not taking responsibility for the patient. This is fundamentally what doctors do. They might convince themselves that they actually do something else, but I am absolutely certain that taking responsibility for a patient is the core and inescapable act of medicine. And almost always, this is what a patient wants, more than anything else (this is way an algorithm will never replace doctors, but that is a another discussion). All my errors and failures stem from ignoring or passing up this responsibility. Of course there are reasons why this occurred - I was too busy, too tired, didn't think I could make any difference, it was someone else's job etc. There are a litany of rationalisations. But at the end of the day, taking responsibility creates the clarity, freedom and trust that is necessary to have a useful therapeutic relationship. The point is that even if you can't do anything to help the patient, even if their condition is totally untreatable and their suffering immense (as is all too often the case), you will always still help them in some way if you take responsibility. I don't know all the details of what happened to you obviously, but in the framework above, the problem you have is finding a doctor who will take responsibility for your condition. Too often, the doctor is 'set up to fail' in this regard, because they have appointments every 10 minutes, have seen 20 people already today, are tired, hungry, dehydrated, pissed off, burnt out, depressed, sleep deprived etc etc. How can they take responsibility for anything in these impoverished conditions? But this is their fault - as a professional, they must find a way to do the needful, however difficult. I am tapping all this out because I think that doctors and patients don't understand this basic idea about taking responsibility. Some doctors seem to think it is their job to do 15 colonoscopies a day, or to seem clever, or to impress the secretarial staff, or to look eminent in a white coat on the ward round, or any number of peripheral and totally irrelevant things. Actually, for serious conditions, I think a patient should ask their doctor to take responsibility explicitly. "I have this problem, and I am looking for someone to take responsibility for treating it." If a doctor says "yes" in response to this question, even if they seem a bit unsure, you have probably found someone that can help you. If they look baffled, it's time to move on, don't waste your time. You will only end up frustrated and angry.

kishoresurana 8y ago

Also there is a connection from your hands to your gut. What if I tell you that there is a simple hand posture will take all the gas from your body? Read about Apana vayu mudra. Do it for 10 minutes when you have a gas trouble and see what happens. Hint: you can’t stop burping and farting. Some random site I found online which has a hand picture of how to do the mudra: http://www.healthmelody.com/heart-health/apana-vayu-mudra-heart-blood-pressure/ http://www.healthmelody.com/heart-health/apana-vayu-mudra-he...