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Living with Nausea: My Story in Six Charts

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Re: Living with Nausea: My Story in Six Charts

#61

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 th…

Great comment and matches my experience exactly. I suffered from inexplicable nausea similar to the author for years, not realizing the stress of my work was causing it. Ran all the same tests as the author, had similar experiences with doctors. Was dismissive about stress as a potential factor. Only when I had a “large life change” like you described — a sabbatical in my case - did things get better.

Completely changed my perspective on how stress can physically affect a person.

Re: Living with Nausea: My Story in Six Charts

#62

Possibly a bit out there of a suggestion, but I had a similar issue where I fairly abruptly developed more or less constant nausea. Eventually, by chance after an endoscopy related to figuring out the cause of the nausea, my doctor realized my B12 level was extremely low, and once they treated me with injections once a day of b12 for a week or two, the nausea suddenly stopped

Low B12 (and folate) levels are also a symptom of tropical sprue, a chronic condition which is treated with B12 supplements/injections and antibiotics. It’s believed the disease is caused by an infection, but the pathogen responsible has not been identified.

A hallmark of tropical sprue is villous atrophy, a symptom usually associated with celiac disease (sprue), so it’s often overlooked.

Re: Living with Nausea: My Story in Six Charts

#63

Earlier quoted context omitted.

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.

doctors don't have any experience doing that and are set in their ways Maybe, it's diagnosing chronic conditions is an opportunity for a disruptive startup? Crowd sourced diagnosis detective work! Call it DrHouse.io, you dump your data and hobbyist doctor investigators try to figure a diagnosis that fits all the symptoms Top ranking users collect mad fees from "commissioned" diagnosis.

There was an Obama era initiative called precision medicine, sometimes called personalized medicine and one of the people spearheading it was a software guy. I sometimes fantasize about using my good debugging skills to heal people. It is like Dr. House. But look up precision medicine.

Re: Living with Nausea: My Story in Six Charts

#64
From a very smart doctor friend:

“That’s a rough article. This person definitely falls outside the usual mechanisms of nausea. I’m always interested in this stuff because managing post operative nausea and vomiting is a huge part of anesthesia. I made a protocol for our ambulatory surgery center using a newer dopamine base drug Amisulpride. Works great for most people. The best one is Aprepitant which is an NK1 inhibitor, pretty cool mechanism, works great for chemo nausea and is super effective for anesthesia related nausea BUT is very expensive. I wonder if anyone offered this patient Droperidol. It’s a cousin of Haloperidol minus the anti-psychotic and sedating effects. It was pulled off the market due to a black box warning that it could cause QT prolongation and a potentially fatal heart arrhythmia but turns out that data was bad and for nausea doses it prolongs the QT interval no longer than many other drugs we allow on the market. I’d say #1 drug for anti nausea is Aprepitant (Emend), #2 success is Amisulpride, #3 Zofran, #4 scopolamine patch. Each has a totally different mechanism. Funny enough I had a patient today who failed all those except Emend (we don’t have it on formulary cuz of cost). You know what worked? 25mg of IV Benadryl. The guy was STILL there at 3pm after being first knee replacement case at 7AM, still puking. Tried everything, even 50mg IV Dextrose. Nope. But IV Benadryl got him out the door in 20 minutes. Totally weird.

Reglan is a really shitty drug, like of all the dopamine mechanism drugs it has the worst side effects. I never give it. Once you’ve seen one patient get the Akathisia from it (they will writhe and want to jump out of their skin) you won’t give it again.”

Re: Living with Nausea: My Story in Six Charts

#65
post #46
post #24

> 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 ju…

> 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? The reason this is a real condition is that it can cause extreme pain and nausea. Food sticking around in your body much longer than it…

I'm not saying real problems can't present with these test results! Clearly they can. I'm saying maybe these test results can happen even if an underlying problem is not there.

Maybe 5 % of days in a normal person's life would show slow food movement with no further adverse effect. That does not invalidate the pain and suffering in those who do suffer from it!

Re: Living with Nausea: My Story in Six Charts

#66
You are alive. And your prognosis, if I am to understand correctly, is overall good.

This Sunday marks the fourth anniversary of my wife's passing at just 46 years old. She had unending nausea, and major motility issues. They also thought gastroparesis at first, and her doctor and surgeon even developed a surgery just for her, which I understand they won awards for. It helped her for about 2 months, and she started regaining weight, but her symptoms- unable to hold down food of any kind- returned.

From there things just got worse. G-J tube feedings with formula. Then TPN, which her body also rejected. And then... the actual starving. Her body refused any sort of nutrition from any source, even directly into her bloodstream.

Doctors essentially gave up. She was on hospice for quite a while. She had started off as a large woman and when she passed, she weighed about 55lbs.

I tell you this not to scare you or make you worry, but to make sure you're grateful for the health you do have, OP.

They never did figure out what was wrong with her. Official cause of death was "malnutrition." Right. Gastrointestinal mysteries such as yours, and hers, really underline the fact that as much as medicine does know about the human body, there is an infinite more that they don't know about it.

Best of luck to you.

Re: Living with Nausea: My Story in Six Charts

#67

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…

Sounds rough. I wonder if a prolonged fast would reset things, either the gut, brain or both?

Re: Living with Nausea: My Story in Six Charts

#68

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…

I've had headache-free ocular migraines since I was about 13 or 14. Your typical aura/flashing/light sensitivity. They always are proceeded by some flash and then I know I have maybe 15 minutes before I'm in the middle of it. Anyway, two things that I find helps. The easiest one is supplementing magnesium -- if I ever run out and forget to order more for a couple weeks I'll inevitably have a migraine. The other one i…

I found my ocular migraines were triggered by my looking out the window in the morning while I brushed my teeth. On sunny days it was a lot of brightness to take in. Since I stopped doing that I haven’t had a single one.

Re: Living with Nausea: My Story in Six Charts

#69
Something strange that people, and myself, have observed in diving is that being submerged in water tend to turn off nausea and abdominal pain. The theory is a combination of mammalian diving reflex and pressure will inform the body to focus on respiration and blood flow, in favor of other lesser emergencies. With personal experience with malfunctioning digestive tract, I discussed this with a researcher and it was also something he had heard from other patients.

Obviously it doesn't fix the underlying issue, and it add some risk to the diving itself, but the temporary break from symptoms are something I value a lot.

Re: Living with Nausea: My Story in Six Charts

#70
I'm curious if they've had any deeper examinations on their neck/spine.

As called out elsewhere migraines are a significant source of nausea and a wide range of things can trigger them. Spinal issues can wreck havoc across your nervous system and trigger an assortment of issues that can be hard to directly link to stuff like a herniated disc.

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