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.

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.

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.

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!

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.”

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.

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.

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.

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.

I am surprised there is no mention of marijuana puffs (quick act, short duration) and cookies (slow act, long duration) which are very effective for Hyperemesis gravidarum of which the primary symptom is nausea. There are cases of women not being able to carry out pregnancy without them due to excessive vomiting. I even remember a woman who would throw up marijuana cookie and had to take it with a joint to make it work. Some of it researched by Dr Melani Dreher

So I had nausea for months with no explicit cause. Saw a few doctors, had even a full gastro inspection. My naturalpath then put me on two things and it cleared me up. Both of these are over the counter natural supplements. Might be worth trying...

Pepzin GI (Zinc-L-Carnosine)- 1 capsule 2x per day 75mg Quercetin- 1 cap 2x per day

If you decide to try this make sure you go with good supplier. E.g. thorne or pure encapsulations

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

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.

The thing where food sits and ferments in your stomach is insane.

So the only relief he gets is from antibiotics, but neither he nor his doctors mention bacteria once? And he draws a bunch of useless graphs instead?

I hope you feel better soon. The enteric nervous system is quite complex and poorly understood.

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...

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.

tl;dr: I felt like death for 2 years probably because of long covid POTS. Feeling somewhat ok now.

I had ridiculous nausea and other weird body issues appear out of the blue around 2022. While I never puked, I got nauseated from even brushing my teeth. I'd have to pause a few times to complete brushing. I suddenly got heartburn, I could only hobble around like an old man. I couldn't tolerate a single car ride, even just getting into a car was too much. After a year, I could at least get in a car and my limbs would all go numb. I could only eat small amounts. Zero tolerance for caffeine. Chocolate sprung up heart burn. Tested for H Pylori, negative.

It was over two years before I could take car rides without absolutely dying. While much better now, I still get abnormally car sick, bouts of relatively mild nausea, and haven't managed a significant meal outside of home.

While I suspect time is the largest factor, I did take a cocktail of supplements. Ginger rooibos tea with every meal, collagen, l-glutamine, creatine, unflavored whey isolate protein, and psyllium husk. Before bed I'd take 3+ mg melatonin, famotidine, ginger pill, artichoke extract pill.

I suspect I had/have long covid induced POTS or similar dyautonomia. Apparently it's quite common: https://archive.is/20240503031045/https://www.washingtonpost.... In any case, I've been recovering and seem to still be recovering.

This is a comment from my wife who went through a similar journey. Hope it helps!

Hey there. I wish to offer you some hope in this situation. My own path to finding a diagnosis was several years long and it involved many doctors who mostly ignored me, and a huge amount of money spent on tests. It started with general weakness and bad reactions to food, where I quickly became intolerant to many different foods and developed hives after every meal. I had intense pain after every meal and was so weak that some days I could not even take my dog for a walk. Tests mostly showed nothing, apart from malnutrition and being severely deficient in basically all vitamins, and doctors told me I am probably making it up and it's stress. I should see a psychiatrist and stop bothering them.

This went on and on and I was feeling worse every day.

There was one source of information that helped me gain understanding of what was happening and find direction on where to go and what to test for and that was dr. Datis Kharrazian's podcasts and book. He deals with different systemic illnesses and I highly recommend this resource.

Ultimately I tested positive for SIBO and 2 years later I am almost 100% back to normal, with very light long term effects of the whole thing.

So, keep in mind this is absolutely not medical advice. I will just line out some conditions I researched while figuring out what could be wrong with me, that I think might be interesting for you.

1. SIBO

According to the fact that you felt better when a tube drained your small intestine, and when you took Erythromicine, which is both an antibiotic and a motility agent, there is a possibility that you might suffer from this. Nausea is not the most common symptom, but it definitely happens. You haven't mentioned more specific symptoms you have with nausea (which is a pretty broad term), but if there is any bloating or actual abdominal pain, look into this.

2. Wilson's disease

A genetic condition that makes you retain too much copper. Can present itself later in life, when critical amounts of copper accumulate. It's rarely tested for. Symptoms could include nausea, neurological symptoms and loss of appetite. Elevated liver enzymes would be a first sign.

3. Stomach acid

I see you have been told you might have too much stomach acid and were put on Pepcid. I remember from my research that there are situations where people are diagnosed this way, while they actually have a lack of acid, which can cause slow gastric emptying. Pepcid in that cause would be the opposite of helpful.

4. Neurological causes

- POTS (possibily cause by Ehlers Danlos Syndrome) - Migraines, as already mentioned. I myself suffer from migraines (less so now), and a headache is the most light symptom, which sometimes I don't even register, while nausea and vertigo is intense for me. They sometimes last for days.

I wish best of luck to you in discovering what might be the root cause of this. Don't be discouraged by doctors who don't wish to dig deeper, and don't be dismissed.

Have you considered Somatic Symptom Disorder?

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.