this post was submitted on 20 Feb 2024
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[Outdated, please look at pinned post] Casual Conversation

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Before I begin- Again, please no medical advice or suggestions. I am going to the Mayo Clinic in March and I will get their advice and I am just going to ignore any medical advice posted, sorry. Please no pity party either, I'm just angry and need a a place to rant and vent, that's it. Feel free to ignore this post and move on.

So... starting in about January of 2023, I started dry heaving almost every morning and this has happened ever since. Nothing has ever come up. Within five minutes of getting up in the morning, I dry heave. Sometimes once, but sometimes a few times.

In March, I stopped eating for six weeks. It's not like I'm too nauseated to eat or I feel too full to eat, I just do not want to eat. Period. I've explained it to others like this- would you be able to eat a turd? No. That's how all solid food feels like to me. I can't even force myself. It's a total aversion to food. Even the smells of food can trigger it, especially savory smells like onions, cooked meat or cheese (meaning I hide in my office in the garage when my wife and daughter have pizza). My current doctor has described it as anorexia but with a physical cause.

I went to urgent care, they told me to go to the ER because they couldn't give me the diagnostics I would need. I went to the ER. They gave me X-rays, they took labs, and they did a couple of other tests I can't remember now and sent it all to my doctor (who I've since gotten rid of because she was worthless). She told me there were no results, but to be sure I also needed a CT scan, and my insurance wouldn't let me go to a private facility, so my only option to get it quickly was to go back to the ER the next day and get one. Incidentally, the first day was an 8-hour visit and the second day was a 6-hour visit. Hooray American healthcare system.

I got prescribed various anti-nausea medications, which were of no help because I had no nausea. I ended up living on Ensure and Gatorade.

Anyway, by mid-April, I was eating again. It just suddenly happened. I felt like eating, ate some crackers, and I was fine with an appetite again. I still heaved every day, but I was fine.

I also had to do a colonoscopy the next month, and just to be sure, I scheduled an EGD where they check your stomach as well. They found an ulcer. Finally, an answer! Nope. They did another EGD six weeks later, the ulcer was gone and I was still heaving.

No one knew what was wrong, of course, but it seemed less urgent. I scheduled a bunch of tests and, since this is the U.S., they were scheduled for months later and the summer started.

Then, in August, on the morning of August 20th, it all changed. I got up, ate some cereal, and that was the last thing I ever ate so far.

Back to the doctors it was! This time, I got a head MRI in case it was neurological, as I do have a rare nerve disorder as well (trigeminal neuralgia) because I won the fucking genetic lottery. Nope, MRI showed nothing. My neurologist actually said my brain was the most healthy she'd seen in a while. So that didn't work.

I couldn't keep taking time off of work, so I took FMLA, a law that allows you to take up to 12 weeks off, unpaid, for health reasons and have a guaranteed job you could come back to. It is actually paid for bigger companies, but if a company has under 50 employees, which mine did, no pay.

12 weeks went by and I just had to end up quitting. What else could I do? I was glad because I hated that job and I was able to put my very bullied daughter into online school and supervise her, so there were good sides, but we're down to a single income now with ever-mounting medical debt despite having "good" insurance.

Anyway, back to the medical situation! I had a HIDA scan. That tests for gallbladder issues. The HIDA scan suggested that might be a problem. So, again, hey, a solution! I had my gallbladder out just before Christmas. It's a simple surgery and you can recover from it with almost no trouble because the gallbladder can be removed like the appendix. I was hoping I'd wake up hungry. No such luck and my gallbladder was healthy.

At this point, most of the doctors basically threw up their hands and said they didn't know what to do and I applied to go to the Mayo Clinic. For those of you unfamiliar, it's one of the best hospitals in the country and it specializes in cases no one can figure out. Sort of a real-life House situation except with lots of doctors instead of one asshole. They accepted me and I go on March 22nd. I was going to have to do a GoFundMe for the trip, but my 81-year-old mother, who is relatively well-off, said she would go with me to be an advocate and take notes and also pay for an AirBnB. I don't really want to drive 8 hours up to Minnesota with a semi-crazy old lady, but at least I'm saving money.

Obviously, it's been very hard on my family. On top of general worrying about me, I can't go out to eat with my wife and daughter because I'm concerned I won't be able to handle a restaurant's smell. I can't even get them fast food. My daughter wanted a meatball sub and I had to tell her I couldn't get it for her because I couldn't handle going inside and I couldn't handle the smell as she drove it home (my wife got it for her later, but I hate telling her I can't get her food). On top of that, I have to request they turn the kitchen fan on when they eat or I won't be able to come back into the house. I usually go to my mother-in-laws' house on Christmas, but I couldn't because there would be a whole bunch of food there.

I wish I could eat. So badly. For so many reasons. I keep seeing food ads and think of how good it would be to have them (in an abstract sense, I wouldn't be able to eat them if they were in front of me). A Nepali restaurant opened in town. I have never had Nepali food, but I love Indian food and I love Tibetan food and Nepal is between them. I drive by it all the time wishing I could have just a tiny bit.

The weirdest part? I feel fine almost all the time. I have very little energy obviously (I do try to exercise), and there's the heaving part, but I don't really feel sick most of the time. Also, I can brag that for the first time in my life I'm just 5 pounds above my BMI ideal weight of 180 pounds. Before I got sick, I weighed 260 pounds. Also, I don't have high cholesterol or high blood pressure anymore, so I guess there's a silver lining? Buying a whole bunch of new pants because none of the old ones fit anymore kind of sucked though.

Anyway, that's my story. It's six months since I've eaten today. My "diet" consists of- Tea in the morning, Ensure four times a day for the nutrition, Gatorade twice a day for the electrolytes, V8 twice a day for the fiber (I have to drink it while holding my nose), and as a treat, either root beer at home or a chai latte out somewhere. Also, I might have gotten the order of things wrong, sorry. There's been so much that I've had to go through.

Six months. I'm going to celebrate by not eating some cake.

Edit: Hooray having a terrible memory too, my mother reminded me this morning that I go on March 26th.

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[–] [email protected] 5 points 1 year ago

Is that FMLA why you've been posting up to 8 times daily? Cuz I see you everywhere on lemmy lol

[–] [email protected] 5 points 1 year ago* (last edited 1 year ago) (2 children)

A few years ago I went to the Mayo Clinic in December (not as a patient) and it was in the coldest place I have ever been. I say that as someone from a place with a relatively cold climate. I guess it won't be as cold in March but bring warm clothing.

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[–] [email protected] 5 points 1 year ago (9 children)

Are you familiar with marijuana? Have you tried getting high? It seems like it might be a good idea.

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[–] [email protected] 5 points 1 year ago (1 children)

I had something similar, but instead it was feeling full and nauseous with just a few bites. Food smells were the worst, and can still trigger nausea for me. I never really got around to figuring out the cause because I was bad at getting healthcare for myself. But it cleared up, weirdly, around the time I had my wisdom teeth taken out. I got my life back after that, and I hope you do too very soon.

Wishing you the best and hope you get some answers with your upcoming visit.

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[–] [email protected] 5 points 1 year ago (3 children)

So sorry you’re going through all of this. As an ER provider I feel so terrible for the patients I see with chronic gastrointestinal issues. I always try to do some things to broaden the differential (I’ve had some pretty clutch diagnoses of chronic mesenteric ischemia in cases like yours by doing a CTA instead of just a CT—usually on patients who have had multiple CT’s), but there’s only so much you can do with the resources available to us in the ED. I always place a GI referral, but I feel like most GI’s actually ignore the chronic stuff if scopes are negative. It really sucks knowing a lot of possible answers but not being the person who can test for them.

Hopefully Mayo helps. Almost sounds like you have some sort of GI motility issue—I wonder if your trigemial neuralgia is actually a more nuanced symptom of an underlying CNS/PNS unifying diagnosis.

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[–] [email protected] 4 points 1 year ago (1 children)

Hey Squid. I'm sorry I missed this post. I'm glad you are gonna get treatment at Mayo, and I'm also glad to see you're asserting an "I need support, not advice" boundary. It's inspiring, as I'm trying to do that for myself right now... because JFC, hearing proposed solutions is exhausting when what you really need is someone to listen and empathize. I'm just now realizing people cannot read my mind, so I guess I gotta be direct.

I wish you the best, man. DM me any time you need to vent, even if it's just a quick "argh dammit this sucks!" I won't ever recommend Vitamin F supplements or whatever

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[–] [email protected] 4 points 1 year ago (1 children)

Yeah, sounds like you are a real life zebra. I'm hopeful that you can get some answers. Looking forward to a future post celebrating them.

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[–] [email protected] 4 points 1 year ago (1 children)

This seems awful. Life sometimes is like that. I will pray for your wellbeing and wish you luck.

Quick question: Does smell of food itself make that reaction? Something like beacon candle.

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[–] [email protected] 4 points 1 year ago (1 children)

Can I ask a question? Are you on any medication?

[–] [email protected] 3 points 1 year ago (3 children)

Yes. Three things. All neurological. And if that is the problem, I am seriously fucked.

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[–] [email protected] 3 points 1 year ago (3 children)

That's terrible, and I'm saddened to read about this going on still.

As misery loves company... I struggle with various health problems that are also hard to diagnose (autoimmune in nature). Doctors weren't super helpful. I blew through almost all of my savings which took a lot of effort and penny pinching to gather. I was unemployed from November 2020 through July 2023, and I wanted to not live anymore. I was never quite suicidal, but I was on that path. Things got dark.

Little by little I made progress. Gluten turned out to be a major contributing factor in my overall bad health. Cutting it out of my diet wasn't easy or enjoyable, but it was a massive change for the better. I was no longer in crippling pain, overwhelming fatigue and my anxiety vastly improved. I found employment again!

Just as I thought I was turning a corner, I get hit with a rare genetic heart condition. I was in danger of having a stroke without knowing it. Now even though there is a new medication I am taking to address that condition, it comes with a lot of potential interactions with other medications. That means I had to give up the one other medicine that helped me get through my chronic pain and other issues, and in so doing I have discovered even more food intolerances are to blame beyond what I already knew. I can now eat basically nothing prepared from a store or restaurant if I want to be functional.

Even so, day by day I manage to get a better grip on my health issues that have plagued me for most of my life. To get there I had to persevere beyond that I had previously thought of as being my limits. I believe this is where you are right now, unfortunately. I wouldn't wish this fate on anyone (okay, maybe a certain fat, shit stain ex-president and his toadies).

I hope you find your answers! Keep us posted! I'm rooting for you!

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[–] [email protected] 3 points 1 year ago (1 children)

As someone also with a largely mysterious, if diagnosed, medical condition, have you tried meditation?

Just kidding! I get tons of well meaning, often worthless advice, but that's by far the most common. I'm like, bitch, I meditate so goddamn much I'm giving the fucking Buddha pointers. Meditation is the only reason I'm not throwing you (and maybe myself with you) out the window right now.

If I may give you one non-medical suggestion from someone who has been there and to some extent still is there, it'll get better as long as you don't give up. You have to be dogged about improvement and it won't be fast or easy, but it'll be there if you put in the work. People who don't understand will think you're being crazy and obsessive, telling you that you need to just come to terms with your condition. Coming to terms is a part of it, but there's always, always something to try. Improving my condition is my biggest hobby and primary job.

I've been plugging away at improving my health for four years now and went from barely being able to function to being 80% normal. I'm working full time again (I know, oh joy) and I can do a lot of the things I used to be able to do. You'll get there, just keep at it. Let me know if I can help or if you ever need to talk, even just to vent.

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[–] [email protected] 3 points 1 year ago* (last edited 1 year ago) (1 children)

That's a very interesting story.

I too have trouble eating anything solid sometimes. It's just too much. I couldn't digest it, I couldn't even swallow it. But fortunately, the supermarket where I live sells liquid food, basically like a milkshake, for low price over-the-counter. So I drink that a lot. It's not "normal", but it works for me. Cheers.

Also, what do you personally believe the reason is? Do you have any spiritual thoughts on this?

So, I'd like to explain my personal view: In older times, it was believed that spirits sometimes take possession of humans. These humans are called "schamans". That causes a series of symptoms, including: dry heaving (especially during the "initiation" period - the initial phase). This is supposed to "clean the body (and also the mind)". The stomach is seen as the "center" of the human (because it is almost completely in the center of the human) and the dry heaving is kinda "throwing out" bad thoughts from your most inner self. During that time, to not complicate the process, people don't eat solid food, because eating solid food would require greater physical strength, and the stomach is busy. TL;DR: Dry heaving is IMO a spiritual "cleaning" ritual, and not eating solid food simplifies the process.

[–] [email protected] 4 points 1 year ago (1 children)

Sorry, I am an atheist and a skeptic, so I'm afraid that is not something I personally buy into (I am not judging you for it, everyone needs to decide this sort of thing for themselves as far as I'm concerned).

I do have one idea which I am going to talk to them about which is if it could be something in my throat since there's never nausea. The heaving sure seems to come from the throat more than the stomach.

[–] [email protected] 3 points 1 year ago (1 children)

Sorry, I am an atheist and a skeptic, so I’m afraid that is not something I personally buy into (I am not judging you for it, everyone needs to decide this sort of thing for themselves as far as I’m concerned).

Yeah, I get that, and I don't want to be an obnoxious walk-from-door-to-door guy. I'm just telling you about my own observations.

I was in a pretty similar situation than you are in right now. I get the pretty strong feeling that there are parallels. I was an atheist myself when I was younger, but my own, personal observations and contemplations made me change my mind. So it might be something for you, too.

Again, I don't wanna be obnoxious, but I have many things to say, and maybe they would speak to you.

[–] [email protected] 4 points 1 year ago (1 children)

I appreciate it, I do. I just don't think this is a road that I feel like I would be able to go down. I'm far too cynical.

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