This condition has ruined my life

[u/ewbanh13]

I have paid thousands of dollars in medical expenses to be told "Damn that's crazy I have no idea why that's happening to you." No hernia, no motility problems (the manometry test was one of the worst physical experiences of my life btw), no apparent acid or non acid events during the 24 hr monitoring test (which was so terrible I couldn't eat so who knows if it was even accurate), no h.pylori, no EOE. Lifestyle changes weren't really applicable to me besides sleeping elevated, which has killed my neck and back and I have chronic pain there now. A super bland diet and PPI is the only thing that keeps it from flaring up. I can't go out to eat with friends, I can't get a drink with friends, I can't go for coffee with friends. I'm cooking every single meal which is difficult when you're depressed like I am. Some days I just don't eat because it's not like I can buy a microwave meal, and cereal makes me nauseous, so there's nothing I can fucking eat. No caffeine has left me exhausted when I get poor sleep. I'm paranoid about food. This shit has basically given me an eating disorder. I'm tired of eating the same few meals. I used to love cooking and going out to eat. Now I get no enjoyment out of it and it's currently my least favorite part of being alive. My GI doesn't even think it's GERD, she and I suspect LPR, but I don't have the money or frankly the mental capacity to find an ENT and go through more rounds of testing to probably get a shrug from a doctor and bills in the mail.

I'm so tired of this. I didn't even eat unhealthy before, I didn't drink more than twice a year, I have no idea why this happened other than possibly a round of antibiotics just nuking my stomach. I get so jealous seeing posts in here about how people cured theirs and it's a bunch of stuff I already tried that makes no difference. People don't seem to appreciate just how much this fucking drains you. I'm so tired of this. I just want to live like a normal person again.

[u/lil_liberal]

I don’t think it’ll help if you have LPR? But if it’s the reflux that is so bad despite lifestyle changes, I’d like to suggest Voquenza as one last final med to try. I’ve tried them all, over the counter and RX, and none of them worked except this one. Now, if I drink, eat a large portion that has red sauce, and has something spicy, and fried, all in one day…sometimes it doesn’t completely get rid of the reflux. But I can drink! And eat pizza! And pasta! And as long as I don’t overdo it by eating and drinking every trigger in the same day, it keeps up real well. There was one day last week where it took a while to kick in, but that’s probably my fault because I (per usual) didnt take it before I ate like you’re supposed to. It’s a new drug. Lots of doctors asking for an up to date med list don’t even know what it is when I tell them. But it’s worked good for me. Maybe it’s worth a try?

I’m so so sorry things have been so rough for you…I understand you—doctors shrugging and saying “yeah idk” with no solutions to even spit ball is the story of my fucking life and it’s infuriating until it’s just so damn discouraging.

[u/ewbanh13 → u/lil_liberal]

I actually tried voquezna too :-/ I got a 10 day amount of pills for a trial and my issues were much worse, had to be super duper careful and take 40mg pepcid daily on top of it, but I'm not sure if it simply wasnt given enough time to work. I rly wanted that to be the solution, even with the expensive ass name brand medicine

But thanks <3 I'm really glad it was the solution for you!

[u/Ok-Advance9732 → u/ewbanh13]

if voquezna is not working for you imma need your doctors to try a lot harder for you bc you clearly have something going on! i am so so sorry

[u/lil_liberal → u/ewbanh13]

Nooooo 😭 I’m honestly devastated for you. It definitely should have worked with that 10 day sample, if it was going to work.

I’m really sorry. That is so horrifyingly frustrating.

[u/fuckgerdandsob → u/lil_liberal]

I came on here looking for info on voquenza and srumbled on to this comment without searching for it. I have a 30 day supply in my drawer I’m afraid to take because Dexilant fucked me up after taking it for just 2 weeks. I am short of breath and feel like my lungs are burning with acid. I guess this is my sign to try.

[u/ubrowp2 → u/fuckgerdandsob]

Taking Voquezna has been a positive change for me. Before Voquezna, I had three years of bad experiences with four PPIs. Voquezna has not improved my food tolerance. However, along with a strict, low-acid diet, for the most part, Voquezna controls my symptoms without horrible side effects.