Living with Nausea: My Story in Six Charts

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.

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.

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

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.

> 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?

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.

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?

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)

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.

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.

Is it same as the case + solution in this video w Forstall?

https://www.youtube.com/watch?v=IiuVggWNqSA&t=2490s

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.