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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

#41

Post by JadeNB »

colechristensen wrote: post #26
divbzero wrote: post #21

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…

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 int…

> 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?

Re: Living with Nausea: My Story in Six Charts

#42

Post by [deleted] »

mncharity wrote: post #22
GlenTheMachine wrote: post #8

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…

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 re…

[deleted]

Re: Living with Nausea: My Story in Six Charts

#43

Post by wordpad25 »

ghostly_s wrote: post #30
divbzero wrote: post #21

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…

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.

Re: Living with Nausea: My Story in Six Charts

#44

Post by esm »

I am sorry you are going through that. Really awful. Credit to you for tracking the symptoms so closely.

The cyclicality of the nausea in your graph is interesting. Personally, I find cyclic vomiting syndrome is underdiagnosed and exists along more of a spectrum than generally assumed. As others have said, there is often overlap with migraine spectrum and central hypersensitivity. An underlying trigger such as a GI infection in predisposed individuals can 'turn up the volume' of normal enteric nerve signaling. This ultimately describes a lot of functional GI conditions.

With central hypersensitivity, chronic pain, chronic migraine, and cyclic vomiting, one of the goals becomes resetting the sensory nerve volume back to a normal level. Meditation, therapy, etc., can all have a role. Often, antidepressants are often used at lower doses since they modulate peripheral nerves too.

FWIW, you may want to ask your current primary or GI/neurologist about cyclic vomiting syndrome and whether to trial a TCA (first line treatment, amitriptyline has the most evidence)

Re: Living with Nausea: My Story in Six Charts

#45

Post by CharlesW »

coolspot wrote: post #39
interdimensi0n wrote: post #5

Is it same as the case + solution in this video w Forstall? https://www.youtube.com/watch?v=IiuVggWNqSA&t=2490s

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.

Actual TLDW (parent commenter might not've watched through the aside): Steve Jobs brought the "world's best acupuncturist" to Scott Forstall in the hospital and literally saved his life.

Re: Living with Nausea: My Story in Six Charts

#46

Post by borski »

kqr wrote: 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 should can cause it to begin fermenting, creating gas and other unhappy products, making you extremely uncomfortable and unhappy.

It is a rare side effect of GLP-1 meds as well, and happened to me, I’m pretty sure (the symptoms fit, and it subsided 3 months later when I lowered the dose).

To say it was debilitating would be the understatement of the year. I sat on the couch for 3 months, physically lacking the energy to do anything, and unable to intake the fuel (food) to fix that very problem due to pain and nausea. A miserable cycle.

Re: Living with Nausea: My Story in Six Charts

#47

Post by quackscience »

geye1234 wrote: post #31

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 is LSD or mushrooms. My friend is a science journalist and covered a group of people taking LSD for cluster headaches, and I figured if it was working for them it was worth a shot.

I still get them a few times per year, but it's way way less frequent now.

Re: Living with Nausea: My Story in Six Charts

#48

Post by gcanyon »

divbzero wrote: post #21

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…

Shoutout for Zen -- it's one of my top ten books and I love it to death. The discourse on the nature of quality fundamentally changed how I perceive the world and interact with it: when someone likes something I dislike, I remember that quality is the interface between the observer and the observed, and there's no right or wrong to that (beyond the extreme/obvious cases). I learned that from Pirsig, and I'm grateful.

Re: Living with Nausea: My Story in Six Charts

#49

Post by gcanyon »

mncharity wrote: post #22
GlenTheMachine wrote: post #8

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…

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 re…

The absolute best meal I've ever had was a cup of clear chicken broth: my first meal after a month in the ICU without eating. As the old saying goes, hunger is the best seasoning, and as I always say, when you're hungry -- I mean really hungry -- nothing satisfies like... food.

Re: Living with Nausea: My Story in Six Charts

#50

Post by steve_adams_86 »

belmarca wrote: post #17

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 infec…

Before I finally got covid I read about the nausea and vomiting symptoms and thought they must be rare. What kind of respiratory infection does that?

Then I got it and my stomach was a mess for 6–8 weeks or so. Oddly it got bad after the infection began to subside. It was the worst part by a long shot.

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