Story I think I’m ready to go

[timetogoplease]

18 years ago during my freshman year of college, I developed a chronic illness. I was in a very intense program, putting in 20 hours days. I've always been a hard worker, very driven and ambitious, on a good path in life, and lucky to have lots of opportunities.

One evening, while I was working away in my dorm room, my roommate brought back some leftover food for me, and it made me sick. I thought it was food poisoning, but I didn't throw up. Ever since that day, I've been nauseous 24/7, just to varying levels of severity.

Basically, it feels like I have food poisoning, all day, every day. And it's my worst nightmare, because I am extremely emetophobic. When it started, it really only got bad after eating. The solution was simple: eat as little as possible. That was enough to get by. I was able to start a company, have a successful career, a wonderful relationship, friends, etc. It was an intense struggle, it was living hell to be nauseous all day every day, and it severely limited my life in many ways, but I made it work, and I had things in my life that I enjoyed.

A couple years ago, it got a lot worse. I went through a particularly stressful time in my life, where I moved across the country for a relationship that didn't work out, and it added a lot of stress to my body. Something internally must have broke or something, because the nausea went from this thing that really only mostly happened after eating, to being constant. I was really struggling to keep up at work, and when the company had layoffs, I was the first to go, which was not a surprise. I was barely holding it together and it was clear to everyone that I probably shouldn't be working anymore.

I moved to be closer to my parents, and it's only been getting worse and worse. It's at a point now where I can barely get out of bed. I can't even sleep through the night without the nausea waking me up every few hours. I can't work, I can't have friends, I can't even do any hobbies. Looking at a phone screen or having any sound makes it worse. All I do every day, is lie in bed with the TV on in the background as quiet as possible, with my eyes closed because I can't even look at the screen. Typing this out right now is a struggle, and I apologize if it's a bit strangely formatted or has port grammar, I'm doing my best here, I don't have the energy to edit it.

Of course, I've been to more doctors than I can count over the years. I've been tested for everything, been to every type of specialist, every medical center within 500 miles, I've been on dozens of different medications, all with no luck. Nothing has ever given me any relief, most of the time it just makes it worse. I've never been able to get a diagnosis either, every test comes back normal. I know something is wrong with me and it's not mental, because after 18 years of dealing with this you'd think I would have found some sort of solution if it was just mental, something that snaps me out of it, but it feels completely out of my control. There is no rhyme or reason to when I feel more or less sick, it's completely random now, and mostly bad all the time.

I have no reason to be alive anymore, and I've ran out of any hope that this is ever going to get better. I can't stand the thought of continuing to go to more doctors. All that's left is to run the same tests I've already had done multiple times anyways. I have nothing, and I'm just a drain on my family's resources. I can't even get disability, because I have no diagnosis, and if I tell them "I'm nauseous all day", they just laugh at me and tell me to get a job. But it's not just like a nuisance, it's severe, debilitating nausea where I've got a trash can next to me, waiting to throw up any second. It drains every ounce of energy I have. Most days, I don't really fall asleep, it's more like I pass out from exhaustion. And I can't take it anymore. I can't keep doing this. This is not a life. This is hell. This is torture.

I am a very strong willed person. I like to think that the fact I've even made it this far is a testament to my drive and naturally positive spirits. But everyone has a breaking point. I've held out hope for a long time that maybe someday I would find answers. But this illness has broken me. I don't even know if I would want to live if I did find a cure because I am burned out. I achieved most of the things that I wanted to achieve anyways, despite my illness, and I don't want to start over again, which I would have to because it's been years since I've worked or had a relationship or even had a friend.

To put it plainly, I would rather not exist than have to suffer another day. At least then, I can have peace.

What I don't want, is a method of ending it that makes me nauseous or makes me throw up. I've already been through enough of that. Please, anything but that. Let my last moments on this earth be without nausea, that's all I ask. I wish it was easier to end my life, I think of all people I would deserve to end it in a way where I don't have to suffer anymore.

 

[Macedonian1987]

Have you been tested for Helicobacter pylori or Escherichia coli. Way back, more than 20 years ago i had the same exact symptoms as you describe, starting in the same exact way with sandwich that was bad but i still ate it. It even amazes me how similar your suffering is to the one i endured baxk then.
I had one of the two bacterias i mentioned. Dont remember which (it was very long time ago) and i was cured with a round of strong antibiotics. Find a good doctor and get tested.

 

[ilovenewyork]

You need to at least get a diagnosis before ctb. It could be an easy solve. They've missed something. Be aggressive until you have an answer. What do you have to lose?

 

[timetogoplease]

Have you been tested for Helicobacter pylori or Escherichia coli. Way back, more than 20 years ago i had the same exact symptoms as you describe, starting in the same exact way with sandwich that was bad but i still ate it. It even amazes me how similar your suffering is to the one i endured baxk then.
I had one of the two bacterias i mentioned. Dont remember which (it was very long time ago) and i was cured with a round of strong antibiotics. Find a good doctor and get tested.

Yes, I have had GI-Maps done about 5 times. 4 of the 5 times everything was normal, but one time did show positive results for both e-coli and h-pylori. I've been on many different antibiotics over the years, specifically based on this one time where I had a positive test result, the only positive test result I've ever had, but the antibiotics never worked. The only time the GI-Map had a positive result, it was done by a homeopathic doctor who I really didn't trust, and I've always doubted the validity of this test, especially because ones done by actual GI specialists always came back negative.

You need to at least get a diagnosis before ctb. It could be an easy solve. They've missed something. Be aggressive until you have an answer. What do you have to lose?

After 18 years of testing and doctors and being very aggressive about trying to find an answer, I'm out of energy to keep going.

 

[ilovenewyork]

Have you told the doctor you'll ctb if they can't fix this?

 

[timetogoplease]

Have you told the doctor you'll ctb if they can't fix this?

No, I've told them how much it has affected my life and how bad it's gotten, and how miserable I am, but today's really the first time where I've fully accepted defeat, so I wouldn't have said that before because it wouldn't have been true.

 

[ilovenewyork]

Well now would be the time to give them notice

 

[Slark]

Have you investigated whether you might have inflammatory bowel disease? I have Crohn's disease, which is one of the two inflammatory bowel diseases, and despite the name, it can affect the entire digestive tract, from the mouth to the anus. Perhaps it would be good to bring this possibility up with your doctors. I hope you get well soon.

 

[Macedonian1987]

18 years ago during my freshman year of college, I developed a chronic illness. I was in a very intense program, putting in 20 hours days. I've always been a hard worker, very driven and ambitious, on a good path in life, and lucky to have lots of opportunities.

One evening, while I was working away in my dorm room, my roommate brought back some leftover food for me, and it made me sick. I thought it was food poisoning, but I didn't throw up. Ever since that day, I've been nauseous 24/7, just to varying levels of severity.

Basically, it feels like I have food poisoning, all day, every day. And it's my worst nightmare, because I am extremely emetophobic. When it started, it really only got bad after eating. The solution was simple: eat as little as possible. That was enough to get by. I was able to start a company, have a successful career, a wonderful relationship, friends, etc. It was an intense struggle, it was living hell to be nauseous all day every day, and it severely limited my life in many ways, but I made it work, and I had things in my life that I enjoyed.

A couple years ago, it got a lot worse. I went through a particularly stressful time in my life, where I moved across the country for a relationship that didn't work out, and it added a lot of stress to my body. Something internally must have broke or something, because the nausea went from this thing that really only mostly happened after eating, to being constant. I was really struggling to keep up at work, and when the company had layoffs, I was the first to go, which was not a surprise. I was barely holding it together and it was clear to everyone that I probably shouldn't be working anymore.

I moved to be closer to my parents, and it's only been getting worse and worse. It's at a point now where I can barely get out of bed. I can't even sleep through the night without the nausea waking me up every few hours. I can't work, I can't have friends, I can't even do any hobbies. Looking at a phone screen or having any sound makes it worse. All I do every day, is lie in bed with the TV on in the background as quiet as possible, with my eyes closed because I can't even look at the screen. Typing this out right now is a struggle, and I apologize if it's a bit strangely formatted or has port grammar, I'm doing my best here, I don't have the energy to edit it.

Of course, I've been to more doctors than I can count over the years. I've been tested for everything, been to every type of specialist, every medical center within 500 miles, I've been on dozens of different medications, all with no luck. Nothing has ever given me any relief, most of the time it just makes it worse. I've never been able to get a diagnosis either, every test comes back normal. I know something is wrong with me and it's not mental, because after 18 years of dealing with this you'd think I would have found some sort of solution if it was just mental, something that snaps me out of it, but it feels completely out of my control. There is no rhyme or reason to when I feel more or less sick, it's completely random now, and mostly bad all the time.

I have no reason to be alive anymore, and I've ran out of any hope that this is ever going to get better. I can't stand the thought of continuing to go to more doctors. All that's left is to run the same tests I've already had done multiple times anyways. I have nothing, and I'm just a drain on my family's resources. I can't even get disability, because I have no diagnosis, and if I tell them "I'm nauseous all day", they just laugh at me and tell me to get a job. But it's not just like a nuisance, it's severe, debilitating nausea where I've got a trash can next to me, waiting to throw up any second. It drains every ounce of energy I have. Most days, I don't really fall asleep, it's more like I pass out from exhaustion. And I can't take it anymore. I can't keep doing this. This is not a life. This is hell. This is torture.

I am a very strong willed person. I like to think that the fact I've even made it this far is a testament to my drive and naturally positive spirits. But everyone has a breaking point. I've held out hope for a long time that maybe someday I would find answers. But this illness has broken me. I don't even know if I would want to live if I did find a cure because I am burned out. I achieved most of the things that I wanted to achieve anyways, despite my illness, and I don't want to start over again, which I would have to because it's been years since I've worked or had a relationship or even had a friend.

To put it plainly, I would rather not exist than have to suffer another day. At least then, I can have peace.

What I don't want, is a method of ending it that makes me nauseous or makes me throw up. I've already been through enough of that. Please, anything but that. Let my last moments on this earth be without nausea, that's all I ask. I wish it was easier to end my life, I think of all people I would deserve to end it in a way where I don't have to suffer anymore.

I am reading this, I hear you, and my heart breaks for what you have endured. First and foremost, you need to know that your exhaustion is completely valid. You are not weak, and you are not "crazy." The fact that you built a life, a career, and relationships while feeling like you had severe food poisoning 24/7 shows an almost superhuman level of strength. You have been running a marathon with broken legs for 18 years. It makes absolute sense that you are at your breaking point.

I know you are burned out on doctors, and I know the thought of running the same tests again makes you want to give up. Standard GI doctors are great at finding structural issues (like ulcers or tumors), but they are notoriously terrible at finding functional, nerve-based, or vascular issues.

Before you make any final decisions, please read through these specific conditions. Based on the exact clues in your post, there are a few highly specific medical avenues that standard GI doctors almost always miss:

1. The "Screen and Sound" Clue: Abdominal Migraines / Vestibular MigrainesYou mentioned a massive clue: "Looking at a phone screen or having any sound makes it worse." Standard stomach issues are not triggered by screens or sounds. Neurological issues are.An abdominal migraine or a vestibular migraine can present purely as unyielding, severe nausea and extreme sensitivity to light/sound/screens, without you ever having an actual headache. Standard GI tests will always come back 100% normal because the issue is in the brain's sensory processing, not the stomach.

2. The Trigger Clue: Post-Infectious Autonomic Neuropathy (Vagus Nerve Damage)You got sick 18 years ago, and it never stopped. It is very common for a virus or bacteria (even one you fought off quickly) to damage the Vagus Nerve, which controls your stomach's ability to empty and process food. When the vagus nerve is damaged, your brain constantly receives a "poison/nausea" signal. You mentioned it got much worse after a highly stressful move/breakup. Severe stress further suppresses the vagus nerve, which explains exactly why your symptoms went from "mostly after eating" to "24/7 constant."

3. The Weight Clue: SMAS or MALS (Vascular Compressions)Because you naturally had to eat as little as possible to survive, you likely lost weight or struggled to maintain it. There is a condition called SMA Syndrome (SMAS). We all have a fat pad that sits between our intestines and our arteries. If you lose that fat pad, your main artery literally crushes your intestine. It causes severe, unrelenting nausea. Similarly, MALS is when a ligament in your diaphragm compresses the celiac artery and nerves, causing horrific nausea. Both require very specific vascular ultrasounds or CT scans with contrast to diagnose, which standard GI docs rarely order.

4. The Phobia Loop: Hyper-Sensitized Gut-Brain AxisBecause you have severe emetophobia, your brain has logically associated your stomach with extreme danger. Over 18 years, your nervous system has become hyper-sensitized. Your brain is locked in a chronic "fight-or-flight" state, and when the body is in fight-or-flight, it entirely shuts down the digestive system—which paradoxically causes severe nausea.

What to do next (without repeating the same old tests):Stop seeing standard Gastroenterologists. They will keep failing you. If you can muster even a tiny fraction of energy, look into a Neurogastroenterologist (a doctor who specializes in the gut-brain connection and nerve motility) or a Neuro-otologist / Neurologist who specializes in atypical migraines and dysautonomia. There are nerve medications (like Amitriptyline, Nortriptyline, or anti-CGRP migraine injections) that can literally "turn off" the nausea switch in the brain when standard anti-nausea meds (like Zofran) fail.

You deserve to live a life where you are not suffering. Please hold on just a little longer to look into these specific neurological/vascular angles.

 

[timetogoplease]

I am reading this, I hear you, and my heart breaks for what you have endured. First and foremost, you need to know that your exhaustion is completely valid. You are not weak, and you are not "crazy." The fact that you built a life, a career, and relationships while feeling like you had severe food poisoning 24/7 shows an almost superhuman level of strength. You have been running a marathon with broken legs for 18 years. It makes absolute sense that you are at your breaking point.

I know you are burned out on doctors, and I know the thought of running the same tests again makes you want to give up. Standard GI doctors are great at finding structural issues (like ulcers or tumors), but they are notoriously terrible at finding functional, nerve-based, or vascular issues.

Before you make any final decisions, please read through these specific conditions. Based on the exact clues in your post, there are a few highly specific medical avenues that standard GI doctors almost always miss:

1. The "Screen and Sound" Clue: Abdominal Migraines / Vestibular MigrainesYou mentioned a massive clue: "Looking at a phone screen or having any sound makes it worse." Standard stomach issues are not triggered by screens or sounds. Neurological issues are.An abdominal migraine or a vestibular migraine can present purely as unyielding, severe nausea and extreme sensitivity to light/sound/screens, without you ever having an actual headache. Standard GI tests will always come back 100% normal because the issue is in the brain's sensory processing, not the stomach.

2. The Trigger Clue: Post-Infectious Autonomic Neuropathy (Vagus Nerve Damage)You got sick 18 years ago, and it never stopped. It is very common for a virus or bacteria (even one you fought off quickly) to damage the Vagus Nerve, which controls your stomach's ability to empty and process food. When the vagus nerve is damaged, your brain constantly receives a "poison/nausea" signal. You mentioned it got much worse after a highly stressful move/breakup. Severe stress further suppresses the vagus nerve, which explains exactly why your symptoms went from "mostly after eating" to "24/7 constant."

3. The Weight Clue: SMAS or MALS (Vascular Compressions)Because you naturally had to eat as little as possible to survive, you likely lost weight or struggled to maintain it. There is a condition called SMA Syndrome (SMAS). We all have a fat pad that sits between our intestines and our arteries. If you lose that fat pad, your main artery literally crushes your intestine. It causes severe, unrelenting nausea. Similarly, MALS is when a ligament in your diaphragm compresses the celiac artery and nerves, causing horrific nausea. Both require very specific vascular ultrasounds or CT scans with contrast to diagnose, which standard GI docs rarely order.

4. The Phobia Loop: Hyper-Sensitized Gut-Brain AxisBecause you have severe emetophobia, your brain has logically associated your stomach with extreme danger. Over 18 years, your nervous system has become hyper-sensitized. Your brain is locked in a chronic "fight-or-flight" state, and when the body is in fight-or-flight, it entirely shuts down the digestive system—which paradoxically causes severe nausea.

What to do next (without repeating the same old tests):Stop seeing standard Gastroenterologists. They will keep failing you. If you can muster even a tiny fraction of energy, look into a Neurogastroenterologist (a doctor who specializes in the gut-brain connection and nerve motility) or a Neuro-otologist / Neurologist who specializes in atypical migraines and dysautonomia. There are nerve medications (like Amitriptyline, Nortriptyline, or anti-CGRP migraine injections) that can literally "turn off" the nausea switch in the brain when standard anti-nausea meds (like Zofran) fail.

You deserve to live a life where you are not suffering. Please hold on just a little longer to look into these specific neurological/vascular angles.

Thank you for your reply. Unfortunately, I've been down all of these roads before. When I mean I've seen every specialist, every doctor type, dozens of medications, and that I've tried everything, I do mean it. I've seen neurologists, had brain scans and mappings, I've tried nortryptaline and amitryptalins which just made things worse, I've worked with a naturopathic doctor on vagus nerve repair and have read two books on it, I've tried anti depressants and anti anxiety meds, anti-seizure, schizophrenia meds, EEGs, MRIs, worked with multiple therapists to do CBT and exposure therapy, and much more.

I really have tried it all.

 

[Macedonian1987]

Thank you for your reply. Unfortunately, I've been down all of these roads before. When I mean I've seen every specialist, every doctor type, dozens of medications, and that I've tried everything, I do mean it. I've seen neurologists, had brain scans and mappings, I've tried nortryptaline and amitryptalins which just made things worse, I've worked with a naturopathic doctor on vagus nerve repair and have read two books on it, I've tried anti depressants and anti anxiety meds, anti-seizure, schizophrenia meds, EEGs, MRIs, worked with multiple therapists to do CBT and exposure therapy, and much more.

I really have tried it all.

I'm so sorry I couldn't have helped you more. It indeed takes super-human strength to endure that for 18 years. I endured exactly the same 24/7 nausea you are enduring and in just 3-4 months it almost killed me. I also lost a great deal of weight.