Things have gotten 100 times worse

[Orange Lightning]

Cutting to the chase. I've finished reducing my Mirtazapine after a week, and now I am on no medications. None whatsoever. This is exactly how I want to remain, but if I do that I probably risk having these awful symptoms every day for the rest of my life.

I've posted here frequently about my struggles with symptoms of GERD and LPR. It's been 14 months now, and it still hasn't gone away. None of my meds every truly stopped it, and I've tried PPIs, H2 Blockers, Gaviscon Advance, digestive supplements, various antidepressants and so on. I've also tried diet and lifestyle changes like raising the bed and strict diets. Still no good. If anything things have gotten a lot worse in just a few days.

I get the following, long list of symptoms, most of which arise as soon as I belch, but some are constant. I've marked the constant ones with a * symbol:

- Constant burping *
- Short of breath
- Lump in throat, doesn't go away with hot drinks/relaxation techniques
- Hard to swallow
- Lost appetite *
- Nausea *
- Heartburn
- Bringing up liquid when I burp *
- Excess mucus in throat/Throat clearing *
- Sore throat, on and off.
- Burning esophagus. Like a hellfire.

I'm anxious about these symptoms all day, but burping is the trigger that causes most symptoms to appear, probably because burping is bringing up all the stomach pepsin. I tried following the whole "anxiety causes excess acid" thing, but that apparently was disproven years ago and is still disproven today. Reflux is not caused by excess acid. End of story.

What's more is I'm now starting to feel these symptoms at night when I never used to. Things are as bad as they were 14 months ago, if not worse! Occasionally I have gone back to the Gaviscon Advance as a last resort, but it's not helping. As soon as I burp it all comes back.

You know, the one good thing about my recent symptoms surge is that I don't feel like ending it all every 10 minutes. Now it's roughly every 2nd day, so still not much better is it? How can anyone live like this every day? I'm sorry to have to say this, but I've seen papers saying the quality of life in people with LPR is lower than that of cancer survivors. Horrid to say, but proven. I want to eat anything I like again, run and exercise as I used to, and not wake up wondering what my next mouthful of bread and water is going to do to me. I work in a sweet shop, and I can't touch anything that all other normal people practically binge on. I keep getting invited to restaurants, and have to turn it down because most foods at most places will make me worse. And even if I follow the diets, I'm not actually curing the reflux. Even surgery only has a 25% chance of 100% relief.

This is the worst possible thing for me. I'm a hypochondriac with the one thing I fear - a lifelong condition that can't even be properly controlled. I don't want to be on drugs for life, especially not ones that don't remove my symptoms completely. I hate being told it's "all in my head" and to "just eat anything I want." If either of these statements were true I would have laughed it all out of myself by now. Life currently has no meaning for me thanks to LPR. I've lost friends, family respect, jobs, beliefs. I can't even pursue my dream career in animal education, because I can only just speak to the public like this.

What should I do? What can I do about this torture? Do I have any chance at all of returning to my old, healthy self, without having to be on sickening drugs and diets forever? I take back anything I said was wrong in my life when I was 21 and younger, and I wish I knew what started my symptoms so I could prevent it all.

Rant over, sorry, this is pretty much what goes through my mind every day at the moment though. Thank you for your patience...

[Dexterjames]

You just come of meds?Side effects wont last for ever mine lasted a week was hard but got of them.
Been having trouble with my stomach like you for well over a year i think the next thing they are going to do is send me for a endoscope i take anti acid tablets i was getting nearly all your symptoms about 2 weeks ago i cant be sure it was my meds but my stomach has settled somewhat i was super anxious at the time pacing all day.

[mummyanxious]

Have you had tests? Sorry if you've explained in previous posts I might not have seen.
I do have a understanding of what you're saying about the quality if life though. I pretty much feel similar. Being in pain every day is depressing and makes me snappy. I would like to get my symptoms under control too and have just started a course of meds.

[Althea]

Orange, can you get a consult with a teaching hospital specialist? I don't know the UK medical hierarchy so well, but with difficult or unusual stuff, your best bet is going to people who are doing the actual research on this and who basically see nothing but people with reflux all day.

I have some atypical reflux, which is mostly just occasional incompetence of the lower esophageal sphincter, and when I checked medical journals for recent studies on reflux I found that there were a lot of things I didn't know, including the fact that PPIs have a *very* short window of time--when they say take them 30 minutes before a meal, they don't mean 15 and they don't mean 45.

And there is also surgery for this, you know. Have you talked to anybody about that?

Oh, and I just noticed you haven't taken any prokinetics. Is there a reason for that?

[mummyanxious]

What's this about taking them 30 min before a meal? I wasn't told when to take mine.

[almamatters]

What's this about taking them 30 min before a meal? I wasn't told when to take mine.

I take lanzoprazole and I'm sure it says on the box take 30 mins before a meal. I have to admit that I often forget and just take them when I think about it, but this probably explains why I still get my reflux symptoms.

---------- Post added at 07:59 ---------- Previous post was at 07:19 ----------

just checked my box, it's 30 - 60 mins before food

[mummyanxious]

Mine are omoprazole and the internal instructions say can be taken with or without food?

[jillyb]

I'm on esomeprazole and it says with or without food. Not sure it's helping that much, but I am very aware of every twinge, acidy feel, nausea as I have become somewhat obsessed with it! GP is certain it's all anxiety related so now taking citalopram. Just want to feel normal again and to eat properly instead of worrying about anything I eat in case it makes it worse. My diet has become very restricted and even then it doesn't work. Sometimes I think s*d it! just eat anything (as I was before it kicked off, with no problems) and see what happens. Note, only think it, don't do it as I'm too scared to take the risk! You're not alone x

[Orange Lightning]

Orange, can you get a consult with a teaching hospital specialist? I don't know the UK medical hierarchy so well, but with difficult or unusual stuff, your best bet is going to people who are doing the actual research on this and who basically see nothing but people with reflux all day.

I have some atypical reflux, which is mostly just occasional incompetence of the lower esophageal sphincter, and when I checked medical journals for recent studies on reflux I found that there were a lot of things I didn't know, including the fact that PPIs have a *very* short window of time--when they say take them 30 minutes before a meal, they don't mean 15 and they don't mean 45.

And there is also surgery for this, you know. Have you talked to anybody about that?

Oh, and I just noticed you haven't taken any prokinetics. Is there a reason for that?


Have you had tests? Sorry if you've explained in previous posts I might not have seen.
I do have a understanding of what you're saying about the quality if life though. I pretty much feel similar. Being in pain every day is depressing and makes me snappy. I would like to get my symptoms under control too and have just started a course of meds.

Best if I answer both of these at once.

- Surgery: Only 1 type works on LPR (LINX) and it has a 25% chance of full success. Is it worth putting up with further pain for only a minimal cure?
- Prokinetics: Tried them and other things like enzyme tablets, Vitamin D3, Manuka Honey, Aloe Vera. Failed.
- Also tried low-carb diet, Dr Kouffman's diet, typical acid reduction diets and even starving myself. Pointless even after months of trying, especially when even water makes me worse.

Just this morning I belched up burning liquid 30 SECONDS AFTER EATING less than usual. That's all it takes. There's no pattern in my foods, no reason for it to happen..! How am I meant to go on like this?! There's only so much more daily pain I can take.

[Althea]

Actually, it looks like the timing is under some discussion in the literature--in searching for my source (the excitingly named "Management of gastroesophageal reflux disease that does not respond well to proton pump inhibitors" by Hershcovici and Fass in the June 2010 issue of Current Opinion in Gastroenterology) I'm finding some things that dispute that. My feeling was that it wouldn't hurt me any to be more specific about the timing, so it was worth trying.

Orange, which prokinetic were you prescribed? (We're not cross-communicating with you talking about probiotics, are we? They're not the same thing.) And is there a teaching hospital you could go to?

[mummyanxious]

Sorry I didn't see where you mentioned any testing? Camera down your throat, ultrasound, xray?

[Orange Lightning]

Sorry I didn't see where you mentioned any testing? Camera down your throat, ultrasound, xray?

I can't edit my first post on my phone, so I'll put my tests done here.

- Endoscopy (clear, but always is with LPR)
- Barium Swallow (clear no hernias, ditto above)
- Gallbladder Scan (clear)
- H.Pylori check (clear)
- Rapid Spit Test for pepsin (NOT CLEAR, stomach pepsin detected in throat).

I was up all last night burping up acid which I can still taste now, and I've been nauseous for at least 48 hours now. Every burp makes my throat 'close over' and makes me breathless, because of more acid brought up. I can't trigger it just by thinking about it. In my desperation I grabbed some of my old meds for reflux. Even they aren't helping, and they are meant to help within an hour. I want to vomit so I can see if it all stops.

[HoneyLove]

Maybe you should try chatting with some people who have LPR to see what they do to manage it? Or ask your doctors about a further treatment plan?

I haven't seen many people here mention LPR, so I'm not sure people here are going to be able to help you?

[Althea]

Okay, so there's no lesions or erosion. That's good news.

I'm still wondering whether you were thinking probiotics when I said prokinetics, since you listed them with over the counter stuff and they'd be prescriptions like domperidone or erythromycin. Have you taken any of those?

While the LINX is new and I can understand not wanting to dive into it without seeing longer-term rsults, I'm actually seeing better results in the early literature than the 25% you describe. I also had a friend who was pretty happen with her Nissen fundoplication, which you didn't mention; I know it's being talked down in the PR for LINX, but it's still helped a lot of people with LPR and not just GERD. It also looks like they're developing the Stretta procedure and the Esophyx device implantation in some locations, so you may want to look into those.

I know how exhausting it is when you have something chronic and you keep throwing stuff at it to no avail, but I think it's worth continuing to explore possibilities, because you sound so miserable with the way things are.