Living with Nausea: My Story in Six Charts

https://www.c82.net/blog/?id=96

by janpio • 1 year ago

169 83 1 year ago

jastanton• 1 year ago

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• 1 year ago

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.

hvs3• 1 year ago

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.

wholinator22• 1 year ago

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

hvs3• 1 year ago

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• 1 year ago

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

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

coolspot2• 1 year ago

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.

CharlesW2• 1 year ago

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.

drewg123• 1 year ago

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• 1 year ago

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/

elialbert• 1 year ago

that reminds me of the old doctor joke that if a guy comes in and says “i feel fine but my wife made me come”, you have to take it very seriously.

GlenTheMachine• 1 year ago

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.

FollowingTheDao4• 1 year ago

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.

FollowingTheDao4• 1 year ago

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• 1 year ago

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• 1 year ago

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.

gcanyon2• 1 year ago

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.

wwilim2• 1 year ago

As plausible as this might sound, it's kind of "just man up and power through it" advice. They stated they often don't feel well enough to leave their house.

stevage3• 1 year ago

Drinking pasta water is another thing that becomes totally appealing during calorie deficit.

e402• 1 year ago

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

philiplu• 1 year ago

Another parent with an ARFID kid here, though it sounds like our case is somewhat different. My kid, almost 16 now, has always had an extremely limited diet repertoire, starting at a failure to switch to non-smooth baby food as a toddler. Early on he exhibited extreme fear reactions to being presented with new foods. Nausea has never really been a huge issue, other than gagging if we tried to force him to try something new.

As he's matured, the reactions are less intense, and with a lot of therapy sessions, most recently with a dietician who also has ARFID, we've made real progress. In our case, that means he's (enthusiastically!) eating cheese pizza, scrambled eggs, and chocolate (but not white) milk, along with the bacon which has been his main protein source since age 3 or so.

Not sure what we'll do when he heads off to college in 2.5 years.

Anyway, if you want to compare notes with another ARFID parent, my email's in my profile.

smittywerben2• 1 year ago

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• 1 year ago

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.

smittywerben2• 1 year ago

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.

FollowingTheDao4• 1 year ago

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...

FollowingTheDao4• 1 year ago

Wow, please disregard that last post. I made a huge error. CCK slows gastric emptying.

Will rework tomorrow.

joe_lin• 1 year ago

I was also going to ask about long covid, since this seems to have appeared right after the covid infection...

wholinator22• 1 year ago

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• 1 year ago

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 filmjölk seems to help…

Really important stuff

spondylosaurus2• 1 year ago

Another Crohn's sufferer checking in—Visibiome probiotics are legit. They don't help everyone, and don't actually repair the intestinal lining (which is a must for these kinds of issues), but can definitely spark improvements. It's also one of the few probiotics with clinical trials to back it up.

namuol• 1 year ago

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• 1 year ago

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• 1 year ago

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!

steve_adams_86• 1 year ago

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.

jb1991• 1 year ago

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• 1 year ago

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• 1 year ago

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• 1 year ago

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• 1 year ago

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.

wordpad252• 1 year ago

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.

gcanyon2• 1 year ago

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.

simonbarker87• 1 year ago

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.

kqr2• 1 year ago

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?

borski3• 1 year ago

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.

kqr2• 1 year ago

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!

asdasdsddd• 1 year ago

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

gropo• 1 year ago

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• 1 year ago

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.

trainspotter• 1 year ago

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.

WarOnPrivacy• 1 year ago

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• 1 year ago

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• 1 year ago

Abdominal migraine is thought to be what caused the nausea that plagued Charles Darwin through much of his life.

quackscience2• 1 year ago

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.

e402• 1 year ago

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.

rubatuga• 1 year ago

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

esm• 1 year ago

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)

VoidWhisperer• 1 year ago

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

BostonFern• 1 year ago

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.

borski3• 1 year ago

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.”

stevage3• 1 year ago

Jesus. I have experienced nausea only a couple of times and it was miserable. cannot imagine the suffering these outliers go through.

geocrasher• 1 year ago

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.

belorn2• 1 year ago

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.

wwilim2• 1 year ago

The author states they often can't leave the house and people are offering advice like diving and mountain climbing.

Only someone with a disability can understand what it's like to be weak. Not temporarily weak, just weak. Unfit for anything.

stevage3• 1 year ago

I don't think that person was specifically offering advice. And I don't think the article was asking for any.

it's interesting info regardless.

belorn2• 1 year ago

Look at the graph in the article. I did a similar one, through for a shorter period. The wast majority is thankfully not at 7+, even if some longer periods has felt like it.

Be a bit careful to not insinuate. Being at 1-2 doesnt mean everything is good. Every day is a question of "how will this day be". I know however that if I only focus on the bad days it can only go one way, and that is downhill until you die. That may sound like a cliche, but when symptoms generally only get worse, and there is no cure, then the end of the tunnel is unlikely to be great.

fzeroracer• 1 year ago

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.

oncallthrow• 1 year ago

Have you considered Somatic Symptom Disorder?

jim-jim-jim• 1 year ago

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?

alen-z• 1 year ago

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.

T0pH4t• 1 year ago

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

majkinetor• 1 year ago

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

deadghost• 1 year ago

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.

Living with Nausea: My Story in Six Charts

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