[HN Gopher] Living with Nausea: My Story in Six Charts
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Living with Nausea: My Story in Six Charts
Author : janpio
Score : 96 points
Date : 2025-01-31 17:37 UTC (5 hours ago)
(HTM) web link (www.c82.net)
(TXT) w3m dump (www.c82.net)
| jastanton wrote:
| I cannot believe how exhausting (and expensive) this
| investigation has been for you. I had a GI surgery and one of the
| possible outcomes was permanent nausea, and when I woke up I had
| nausea for about 3 months and it was horrific. The symptoms
| resolved on their own after a while, and for a time I believe
| them to be psychosomatic, so I began meditation. In the end I
| don't know, but that must be scary.
|
| I'm curious if fecal microbiota transplantation has been
| discussed? From what I can tell the gut biome is under studied
| and the effects are pretty scattered and wide. Thoughts?
| cmclaughlin wrote:
| I will be honest, I only skimmed the article... But I did not see
| any mention of exercise. Not sure if the author will read this,
| but the best way I know to increase metabolism is to walk or
| swim. Ideally work up to something more intense like yoga or
| weightlifting as you start to feel better. Basically, activity
| work at building up an appetite and eat high fiber foods.
|
| Also check out the fodmap diet to get your gut in order before
| working up to exercise.
| hvs wrote:
| As someone with Crohn's disease (thankfully now in remission) I
| can fully relate. Nausea is the worst symptom because it is so
| debilitating. You don't want to do anything when you are
| nauseated and when it goes on for months that affects every part
| of your life.
| wholinator2 wrote:
| That's so interesting. I have crohns' (definitely not remission
| but not flare either), and nausea has never been a thing for
| me. It's just pain and the usual incomplete digestion if i
| stray at all out of my heavily restricted diet. How did you get
| remission? I'm about to have to up my remicade dose
| hvs wrote:
| Mine is primarily in my large intestine, so it's like a weird
| combination of Crohn's and UC, which could be why it causes
| so much nausea. Remission for me was just sort of luck and
| time. I was first diagnosed at 28, was on a ton of steroids
| followed by about 20 years of Imuran. After a colonoscopy my
| GI doctor said that my colon shows no sign of damage anymore
| and that since Imuran increases risk for cancer that I should
| consider trying to reduce my dosage. After about a year of
| reducing I was totally off with no return of symptoms. Now
| I'm just on mesalamine. So, TL;DR, I got lucky. Good luck
| with your treatment.
| interdimensi0n wrote:
| Is it same as the case + solution in this video w Forstall?
|
| https://www.youtube.com/watch?v=IiuVggWNqSA&t=2490s
| coolspot wrote:
| That's a very good and funny interview, thank you!
|
| TLDW: Steve Jobs cured Scott Forstall's chronic nausea by
| almost dedicating a wing in a hospital.
| drewg123 wrote:
| I had GI surgery, and afterwards, I had an "Ileus" (intestines
| don't move food through), which is apparently a low probability
| side effect. I was utterly miserable for a week, with horrible
| nausea and vomiting. Even water. If my wife had not made me go
| back to the hospital, I'd probably have died from dehydration.
|
| I cannot imagine living with nausea for months or years.
| dillydogg wrote:
| Depending on the risk factors (prolonged surgery, open surgery,
| opioid use, hypokalemia, NG tube placement) postoperative ileus
| is seen in 10-20% of people after GI surgery.
|
| Not to minimize the terrible subjective experience you've had.
| I wanted to point out that it isn't that uncommon.
|
| https://www.ncbi.nlm.nih.gov/books/NBK558937/
| GlenTheMachine wrote:
| So my kid has ARFID. I am not a doctor, but what I have learned
| is that eventually, anything that causes nausea associated with
| eating can progress into ARFID, even if the original underlying
| cause resolves. ARFID is technically an eating disorder, like
| anorexia, but it isn't related to poor body image; it is,
| basically, a food aversion to, well, food. All food, or nearly
| all. This is what happened to my kid; there's an underlying
| disorder that can be treated with meds, but when not treated
| causes nearly constant nausea. Once we diagnosed and treated the
| underlying cause, the nausea didn't go away. My kid's brain had
| learned to associate eating with being sick, and that association
| persisted even when the original illness resolved.
|
| My kid at one point was admitted to the hospital for two weeks
| because said kid had lost so much weight. They inserted a gastric
| tube, and kid discovered that kid did not become nauseous when
| fed through the tube. We knew kid had ARFID, but this was ah
| "a-ha" moment for kid, because it showed kid irrefutable proof
| that the problem was not a physical issue with kid's gut. It was
| very clearly related to the experience of eating. Kid has
| subsequently learned to "eat through the nausea" as described in
| the post.
|
| That's what this sounds like. There was likely an underlying
| physical cause of the nausea; that cause may or may not have
| resolved, but the nausea is now it's own thing. The OP indicates
| a series of consults with a behaviorist; I would imagine being
| screened for eating disorders is what that was about, but ARFID
| is not a common eating disorder, and may or may not have been
| considered.
| FollowingTheDao wrote:
| Your son's serotonin in his gut may still be high. Please do
| not assume that the nausea is related to a psychological
| disorder. My parents did this with me and it turns out my case
| was a lot more complicated.
|
| I don't know if you tried antinausea medication that blocks the
| serotonin HT3 receptor but if you try that and the nausea goes
| away, I would look ant increased serotonin release as a culprit
| instead.
| FollowingTheDao wrote:
| https://www.ncbi.nlm.nih.gov/books/NBK603710/
|
| "Research regarding ARFID is still emerging; the role of
| serotonin in sensory processing and anxiety suggests a
| potential mechanism through which neurotransmitter
| dysregulation could influence the disorder. Moreover, sensory
| processing issues, which are not exclusive to ARFID but are
| also present in other conditions (eg, autism), may be
| associated with abnormal serotonin function, further
| supporting the need to investigate serotonin's role in ARFID"
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC305267/
| mncharity wrote:
| Fwiw: Strenuous winter activities (eg mountain hiking and
| camping) can more than double baseline calorie demand. Sitting
| down to a base camp meal afterward can be a body-has-a-mind-of-
| its-own saliva-gushing "FEED ME NOW!!!" experience of really-
| need-to-pee intensity. Normally unappealing food commonly
| becomes just fine - uncooked pasta, blocks of lard, whatever.
| So I wonder... what happens if food-is-nauseating is repeatedly
| hit with a hammer of the "are you going to eat that vomit, or
| can I please have it? - it looks quite yummy" of extreme
| calorie appeal?
|
| Another thought is the breastfeeding maternal-diet envelope
| expansion drill, of working outward from some one bland safe
| thing, experimentally adding a thing at a time, and backing off
| upon problems.
| dgunay wrote:
| I haven't ever had a real eating disorder, but a lot of my
| childhood food aversions were finally broken during times of
| extreme hunger.
| smittywerben wrote:
| I apparently have a food allergy. I thought it was acid for
| years. It wasn't until I moved somewhere with much higher pollen
| levels that my stomach symptoms were way worse and I noticed the
| cross-reactivity. Usually allergies are faster but when it's not
| it the food makes it into your stomach and your whole body has
| issues. It's something I'm still kind of figuring out as we
| speak. Some people I think call it a mast cell disorder but I
| just call it a food allergy that I take Zyrtec for. Could it be
| described as "hives but in your stomach"? I mention this because
| you mentioned Dramamine, which, in fact, is also an
| antihistimine.
| aaronbrethorst wrote:
| I had (have) an undiagnosed gluten allergy, and had similar
| issues for a couple years until I tried cutting wheat and other
| sources of gluten out of my diet and felt like a normal human
| being again within two days.
| smittywerben wrote:
| You have to be careful with suggesting to cut out X/Y/Z
| foods. Said another way, I would recommend OP eat a bag of
| gluten and see if they end up in the hospital you'll have
| your diagnosis in 15 minutes and then there'd be no argument.
|
| I'm not speaking about you specifically, parents get the
| cutting out X/Y/Z food wrong with their kids all the time. It
| makes people afraid of eating instead of afraid of what
| they're allergic to. Unless you maintain a strict food
| journal which I don't have time for why not just take 2x dose
| of Zyrtec (I'm just a happy customer) for a week, then try
| the gluten/paleo/soylent/steve jobs diet.
|
| Edit: I am not a medical doctor and taking an antihistamine
| to mask a food allergy is probably dangerous but I'm still
| testing myself. OP said they tried Dramamine, which is an
| antihistime. I've taken that along with many antacids
| including Nexium and Pepcid which are also antihistimine.
| Maybe mast cell disorder is what doctors have to call it so
| someone with a peanut allergy doesn't read this and reaches
| for zyrtec and a bowl of peanuts and throws out their epipen.
| That's why I mentioned the pollen cross-reactivity because I
| think my body is just overreacting so I'm making the
| executive decision to suppress it. It's been 8 months or so,
| I've not taken a single Nexium, only a couple pepcid which
| for my family is basically cured. I moved somewhere with less
| pollen because I don't like taking pills all the time.
|
| Edit-Edit (I'm really focused on this topic lately): The
| bottom line is that I reduced my cetirizine use from 15-20
| mg/day to about 5 mg/day by moving to a place with less
| pollen.
|
| If you're experiencing something similar, pay attention to
| any systemic symptoms and listen to your body. I had
| eliminated almost all food from my diet to control my gastric
| issues. But my left ear was having tinnitus. They checked it,
| they said my ears are very clean and thought it might be
| middle ear problems. They gave me a list of antihistimines
| and a nasal steroid (flonase) to try. I channeled my
| oppositional energy and thought, "Well, if they want me to
| try it..."
|
| So I bought the entire list they gave me, I took cetirizine
| once a day, loratadine twice a day, and occasionally a
| fexofenadine pill (along with my usual double dose of Nexium,
| which I was desperate to discontinue) plus the Flonase for
| good measure.
|
| I started cetirizine to manage tinnitus and dizziness, which
| are entirely separate systemic symptoms that I had never
| associated with my gastric symptoms or food.
|
| A few days later, my ears cleared, and all my gastric/reflux
| symptoms disappeared. I quit all antacids on the same _day_.
| When my middle ears drain, that's my canary in the coal mine.
| It had worked so well that I wondered how long I had been
| suffering before I moved to Pollenville in the first place
| and just didn't notice.
|
| Thanks Pollenville. You were my bag of raw gluten powder.
| FollowingTheDao wrote:
| My feeling is this was caused by COVID damaging the neurons or
| receptors of the stomach or duodenum, or, more likely that COVID
| caused a Magnesium Deficiency:
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC10445067/
|
| But some thoughts:
|
| If the stomach is not emptying it means it is not getting the
| signal to empty.
|
| Some of his symptoms signal high serotonin (panic attack, nasuea)
|
| https://www.nature.com/articles/1300880
|
| Anti-nasuea meds block the serotonin HT3 Receptor.
|
| https://www.ncbi.nlm.nih.gov/books/NBK513318/
|
| But the lack of gastric emptying is mostly controlled by high
| Cholecystokinin (https://www.uniprot.org/uniprotkb/P06307/entry)
|
| https://pubmed.ncbi.nlm.nih.gov/645853/
|
| Now it could be that his Cholecystokinin receptors are not
| getting this signal from the Cholecystokinin, or, since these are
| G Protein Coupled Receptors, that there is not enough GTP in the
| cell to create the cAMP needed for the stimulation to carry on
| down stream.
|
| https://www.nature.com/scitable/content/ne0000/ne0000/ne0000...
|
| To make GTP you need magnesium:
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC3400779/
|
| Magnesium is one nutrient found deficient in Gastroparisis:
|
| https://pubmed.ncbi.nlm.nih.gov/2012043/
|
| Not to mention that low magnesium is linked to worse COVID
| outcome.
|
| Also, he said he had some tardive dyskinesia from some meds which
| would also point to low magnesium since low magnesium is linked
| to the disorder:
|
| https://pubmed.ncbi.nlm.nih.gov/27816557/
|
| Why did the ginger help? That is easy:
|
| It triggers cholecystokinin signaling by activating the TRPV1. So
| more spicy foods will probably help as well. BUT, this to me
| would not be a long term solution since IMHO it would lower
| magnesium even more.
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC11192538/
|
| EGCG in green tea also triggers this receptor.
|
| So it may be that he has some genetic issue with his
| Cholecystokinin receptor genetics that made him more vulnerable
| to a magnesium deficiency caused by COVID.
|
| https://www.scirp.org/journal/paperinformation?paperid=11741...
| wholinator2 wrote:
| Hey there, i have crohns' which isn't nausea based for me but
| definitely i understand the debilitating nature of
| gastrointestinal issues. It really just kills your ability to
| think, to talk socially, it completely and totally stole my
| adolescence. I'm sure you've done endless research, I'm not gonna
| tell you i have a cure. But if you haven't, you should look into
| gut microbiota. My understanding is that the balance of types of
| bacteria in the stomach and intestines has so so so much more to
| do with our daily experience than anyone realizes. And that any
| kind of infection or antibiotic regiment or just normal living
| can precipitate a change in the balance that just obliterates
| peoples lives. And we just don't know much at all about it yet.
| I've seen many people talk over the years about experimenting
| with different probiotics, even down to ordering exact strains of
| bacteria to make yogurt and test. If you need a new path to
| research and try things you can look there. As i said, doctors
| don't know much about it yet so it you probably can't find one to
| guide you through it. You'll have to figure it out, but it's
| possible, people have been helped, and at the end of it all, i
| hope it gets better for you. <3
| binary132 wrote:
| Yes, I think this is an incredibly important area of research
| that has enormous potential to affect countless people's lives
| for the better. My wife suffered from chronic GI pain attacks
| for years and now I have come down with an entire year of
| symptoms (that seem to be improving overall -- but I still need
| to do testing, but have been avoiding diagnostics...)
|
| I intend to try to do something to help people in a similar
| situation to what we went through when she was sick, but I'm
| not too sure where to start and haven't found the time or
| energy yet. Siggi's plain filmjolk seems to help...
|
| Really important stuff
| namuol wrote:
| The emotional turmoil of trying to get help from the medical
| system with an unknown chronic illness can be just as bad or
| worse than the illness itself at times. I hope the author gets to
| the bottom of things and is able to find treatment or treat
| themselves.
| nejsjsjsbsb wrote:
| Yes when this happens you become a project manager trying to
| persuade resources you have no control over to get on board.
| And you are paying for them. And they may give you bad advice.
| And you feel like shit and don't want to do it.
| belmarca wrote:
| Hi author,
|
| I have an uncannily similar physical and symptomatic profile. Do
| you experience anxiety? My symptoms were so intense and
| unpredictable that I developed anxiety from it. I had to learn to
| manage and distinguish both issues, which helped a ton. I never
| had any formal diagnostic as every doc basically says
| "everything's normal", but I now suspect a heightened stomach
| sensibility due to multiple COVID-19 infections coupled with a
| highly stressful period in my life. I haven't had COVID in a
| while now and my stress levels are much lower so symptoms are
| mostly gone.
|
| I understand how debilitating and hellish it can be. I wish you
| all the best!
| jb1991 wrote:
| If the author is reading this, might want to consider the
| possibility of an onset of chronic "silent migraines" which can
| have quite the nauseating effect but without the headache. I
| suffer from them and they are debilitating. While reading your
| article, I kept thinking it would eventually get to the part
| where you discovered you are having migraines (which also tend to
| run in cycles of a couple weeks to a month for many people,
| myself included), but no mention of this anywhere, so thought I'd
| point it out.
| divbzero wrote:
| _Zen and the Art of Motorcycle Maintenance_ describes how
| motorcycle maintenance by the owner is qualitatively different
| from motorcycle maintenance by a professional mechanic. The
| professional mechanic can examine the motorcycle at a single
| point in time, but the owner rides the motorcycle and can collect
| observations as the motorcycle runs.
|
| Understanding your body can be similar. While medical expertise
| is absolutely worth consulting, doctors can only base their
| diagnoses on your self-reported symptoms and on their
| examinations at single points in time. The more data you collect
| and report to the doctor, the more likely you can work out
| exactly what's going on.
|
| I know someone who lived with chronic discomfort, observed over
| several years, and after many doctor visits finally pinpointed
| the root cause. Best wishes to the author on his search.
| colechristensen wrote:
| Persig argues that the problem is more than just point in time
| vs continuous, it's that the typical mechanic doesn't care,
| they are neither careful nor interested. It's the same with
| doctors. Unless you have something straightforward: a tumor, a
| broken bone, a bacterial infection, etc... it is quite
| difficult to get a doctor _interested_ in solving a difficult
| problem. They don't have time for you and they aren't
| interested in subtlety.
|
| If your problem can't be addressed with antibiotics or pain
| meds, then it's "let's try SSRIs for the next six months and
| see how it works".
| JadeNB wrote:
| > It's the same with doctors. Unless you have something
| straightforward: a tumor, a broken bone, a bacterial
| infection, etc... it is quite difficult to get a doctor
| _interested_ in solving a difficult problem. They don't have
| time for you and they aren't interested in subtlety.
|
| I didn't realise how true this was until I started trying to
| obtain treatment for asthma that is slightly different from
| the apparently easy kind. I literally had a doctor get raise-
| his-voice angry with me because he thought a medicine should
| treat my asthma, but it measurably had no effect. Anyway, I
| saw a summary re-posted on Imgur, probably from Twitter, that
| I think summed it up:
|
| > doctors in medical dramas when a patient has a mystery
| illness: I must examine every symptom and run every test! I
| won't rest until I've cracked this case!
|
| >
|
| > doctors irl when a patient has a mystery illness: hmm, have
| you considered that you're faking it?
| ghostly_s wrote:
| The author explicitly mentions they collected all this data
| hoping it would be valuable to the specialists they have seen,
| but found they consistently were uninterested in it -- an
| experience I can say is nearly universal for chronic illness
| sufferers I know in the US.
| simonbarker87 wrote:
| For those with no clear diagnosis for similar leading to "It's
| IBS" I _highly_ recommend gut directed hypnotherapy. I am as
| science, tech, engineering as you can be but after 3 months of
| similar (but not as bad) symptoms as the author I happily tried
| the Nerva app at a dieticians recommendation. This was after
| every test you van do ruled out anything life threatening,
| bacterial or physical.
|
| It started to work for me very quickly and helped me isolate
| triggers (none were food, all work and stress related, even
| though I didn't feel stressed at all) and now, after about 3
| months the I'm mostly fine again.
|
| The mind gut connection is strong and very very real.
|
| I hope the author continues to get better.
| kqr wrote:
| > After four hours, I should have had 10% or less in my stomach
| but in December 2023, I had 41% remaining, which indicated
| gastroparesis. [...] The second study I had in September 2024
| showed 8% remaining, at which point my gastroparesis was
| considered resolved but my symptoms persisted.
|
| I have a pet hypothesis that a non-trivial chunk of the
| "problems" discovered with medical testing are not actually
| problems but just expressions of the surprisingly wide variation
| in how humans work. Maybe this was just a thing that happened and
| not a condition that auto-resolved?
|
| > In August 2024, I learned of a clinical trial [...] Ultimately,
| the medication didn't have any positive impact on my nausea but
| also didn't cause negative side effects.
|
| Did you end up in the placebo arm, perchance?
| asdasdsddd wrote:
| The thing where food sits and ferments in your stomach is insane.
| gropo wrote:
| looking at all that data it appears that smoking cannabis is out
| of the question to this person.
|
| the person should smoke cannabis regularly until a solution is
| found.
| Aurornis wrote:
| I know someone who semi-specializes in treating GI conditions
| that present like this (unknown cause, vague diagnosis). It's a
| very difficult area to work in because non-specific GI symptoms
| can be the result of a wide range of things, from physical
| obstructions to nervous system problems and even stress.
|
| This blog post is great because the author keeps an open mind.
| One of the challenges with functional conditions that can
| possibly overlap with mental health is that some people (not this
| author, speaking generically) become extremely defensive at any
| suggestion that the condition might be related to stress,
| anxiety, or depression. My friend has a whole strategy of asking
| questions about the person's life, job, relationships, and life
| changes around the time the condition started. With surprising
| frequency, patients will remember the start date of their GI
| conditions specifically because it happened near something
| stressful (death in the family, layoffs, new job, etc.). I don't
| think this applies to the blog author, but keep in mind for
| anyone else reading this with similar symptoms.
|
| Stress-triggered conditions have a bad property of becoming self-
| reinforcing. The initial stressor might be gone, but the person
| is stressed about the constant problems with their conditions.
| Understandably so!
|
| She says it's common to have people spontaneously get better when
| they get a new job, go on a long vacation, enter a new
| relationship, or other large life changes. It's also common for
| patients to start SSRIs with another provider and
| "coincidentally" the GI symptoms get better. It's also common for
| other providers to blindly prescribe medications that worsen GI
| symptoms if they aren't paying attention.
|
| The hard part for her broaching the subject with patients who
| don't want to hear it. There's a huge resistance to any path of
| inquiry that patients think as "all in your head" diagnoses. It's
| understandable, but at the same time most people don't understand
| that your nervous system operates throughout the body (not just
| the "head" or brain) and the activity of the GI system is heavily
| modulated by the nervous system.
| WarOnPrivacy wrote:
| From the article. "I tracked
| [intensity,frequency] to help my doctors better understand how I
| was feeling and create new treatment plans but that never
| happened, despite mentioning it to every doctor I've seen."
|
| This struck me and I'm wondering if research hospitals are still
| a thing.
|
| During last century, I could take an odd issue to a research
| hostpial and have multiple, different groups of interested
| medical people.
|
| Not just Dr + students but also clusters of specialists. The
| latter especially wanted every detail they could get.
| geye1234 wrote:
| Absolutely, 100% consider migraines. Headaches are far from their
| only symptom, and headache-free migraines are a thing. Nausea is
| a common symptom. It's worth a try, and the medication is
| generally safe with few side effects. Consider talking to your
| neurologist or finding another that specializes in headaches.
|
| Start with triptans (which your insurance may insist you do
| anyway), which are very cheap, and then try a CGRP blocker like
| Nurtec, which is patented and expensive. I get migraines, but
| nausea, depression and tiredness are far bigger effects for me
| than the actual headache (which is normally controllable with OTC
| drugs). CGRP blockers have been life-changing. It took them years
| to diagnose me with migraines, in fact I had to suggest it
| myself.
| pfdietz wrote:
| Abdominal migraine is thought to be what caused the nausea that
| plagued Charles Darwin through much of his life.
| codr7 wrote:
| I would definitely give cannabis another chance to help with the
| nausea, the less synthetic the better. I have a feeling you
| wouldn't need much to get the effect, some sort of microdosing
| might even work.
|
| Also, Ivermectin seems to fix many Covid issues, could be worth
| trying.
| rubatuga wrote:
| I hope you feel better soon. The enteric nervous system is quite
| complex and poorly understood.
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