Things have gotten 100 times worse (rant)

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 *
- Burning esophagus. Like a hellfire.
- Sore throat, on and off.

I'm anxious about this all day, but burping is the trigger, 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...

Post Edited (Daxter) : 2/26/2014 12:24:07 PM (GMT-7)

I can understand you. I also have these symptoms and wind in esophagus is worse. Constant burping is feeling of something stuck in throat. I'm on PPI but doubtful about they. Perhaps i should go for an esophagus dilation? I'm also bloated and cönstipated. I also used to be very ambitious but now i just want to get rid of this sickness.

I understand how you feel. That's what i feel. GERD has destroyed my life. This disease is so strong and tough.

Hi Daxter,
My heart goes out to you. We all have days when we would like to drive off the edge of a cliff, I've had one myself today - but please hang in there.

I have weakly acid reflux but a lot of it, and I have severe LPR which has caused upper dysphagia - and now on top of that I now have lower dysphagia and a hernia - so it's hideous trying to eat anything - and surgery is out of the question for me.

However - my GP has just upped my ppi's to even bigger doses - 60mg omeprazole morning and night - now normally I can feel every little squirt of acid or impedance or gas and actually today - it's been better, not perfect but better.

Now I will take that - and work on the dysphagia - until a proper solution comes for me - so if we all just find little ways that make us feel 5% better one day, then another 5% next week, pretty soon we can find a way to make it tolerable.

Surround yourself with good consultants, don't be afraid to fire the ones who don't fight your corner, research on the internet, ask the people on this board, try new things yourself.

The Reza Band is due out next quarter, hopefully that can help a lot of us.

But don't - I repeat don't ever quit!

Daxter,

have you tried the restech test? This will show if you are refluxing into your throat. In the meantime why don't you up your dose of gaviscon advance and make a spray bottle of some - try putting some in a bottle and adding water then keep spraying it liberally into your mouth, letting it dribble down your throat - this will apply a coating to your throat that sieves the pepsin that is reaching your throat.

I also think you may need to talk to someone about your frustrations, and get some support.

I wish you well.

Hi Daxter,

I know how frustrating it is to not be able to rid yourself of this horrible condition, and I'm sure it's not much comfort that millions are suffering from the same problem in various forms. Even further aggravating is that doctors don't seem to understand or shrug it off with "Well, you'll just have to learn to live with it."

When I got my Barretts diagnosis in September last year, the GI doc gave me a script for Opemprazole with a years worth of refills, instructions on the FODMAP diet, an appointment for another endoscopy in June, and sent me on my way.

I haven't read all your posts, but I do remember you discovering you may not have done your peptests properly. Did you ever do any restests? Since you have the Ph probe coming up, I suspect you''re waiting for that instead. The results of that could be a real turning point for you. It is critical to know if you have too much pepsin/acid or too little, as the treatments are exactly opposite each other.

The other area to check if your Ph comes back normal or too high(meaning low acid) is the presence of bile in your stomach, along with a gall bladder function test. Bile can cause the exact same burning in the throat as pepsin/acid, and do just as much damage to the esophagus. And if bile is getting into your stomach, the result is the same as too little acid -- the whole digestive process is disturbed, resulting in gas, belching, and bloating, refluxing whatever is in your stomach - pepsin, acid, bile - up into your throat.

So hang in there until you get a proper diagnosis. Unfortunately, a lot of doctors have no more clue about this condition than we do, and you might have to go through more than one, and a bunch of other tests, to get to the bottom of it.

Post Edited (rjdriver) : 3/1/2014 8:03:08 AM (GMT-7)

jamosca said...
Hi daxter, I think you are taking too much acid suppressants causing your stomach to be really confused and probably gone into acid overload. One time I was really bad and went to a&e and she gave me maximum dosage of ppi of omeprazole which was about 4, I thought I was going to die . All I could feel was reflux the whole day into the back of my throat and covered my whole tongue white. I felt so bad from all the ppi, I just stopped cold turkey and let my stomach settle down.


Why don't you just try stopping every single one of your meds if you don't need them and go cold turkey even your anxiety meds. Instead take some mastic gum or aloe Vera as their replacement . Stress really does cause a lot of problems and anxieties . You have to get over it mentally ...

You will find you are shallow breathing and not using your diaphragm, . I find I breath up and my stomach is not going down because I am holding my breath and shallow breathing. This weakens the diaphragm and lower spincter long term and allows reflux through.

There are Peptest results on the way, but they're guaranteed to be positive as I chucked up in the night during one of my samples. Since then I've gotten progressively worse. What I don't understand is how some of my symptoms like clearing my throat and even more burping/burning have cleared, but now I have all these other horrid symptoms instead, which nothing can control. I thought Mirtazapine/Remeron was just an antidepressant, but maybe it has a hand in curing LPR? In a way I hope not... I wanted my improvement to be because I was controlling my stress, not my chronic illness.

Also what I don't get is how some symptoms only appear at certain times of the day - for example I have trouble swallowing and a lot of mucus BEFORE eating, not just after. I also see a lot of people saying their only relief from similar symptoms to mine is to burp, but in my case the burp makes me worse. :p

And yet the symptoms continue to develop. On top of everything else, there is now a pain in my mouth and ear, to go with that liquid feeling, which gets worse when I swallow. Seriously, I'm on the Koufman diet, I'm taking the meds, I've got the vitamin d3 and Gaviscon. What would cause me to become worse so suddenly, now that the Mirtazapine has gone? I was burping A LOT more while I was on the Mirtazapine, and I never got such horrible symptoms at all; just a little bit of mucus.

Post Edited (Daxter) : 3/1/2014 12:02:58 PM (GMT-7)

Daxter, why don't you just continue on the Mirtazapine if it helps control your anxiety and gerd. Win-win, being on medicine for life is not really so bad if you can function quite normally . There are many people who are medicines for life so long as it gives them quality. The problem is looking back when you were normal and healthy. I have had a herniated neck disc for 12 years, the first couple of years were hell but nowadays through exercise and stretching and chiropractic sessions, it hardly bothers me now and I am going to kick gerd up its ass. People age and unfortunately our body gets wear and tear but you have to concentrate and focus on something you feel passionate about. I have a ballet dancer friend who is 50 now and in his late 20 he said it was murder getting out of bed due to his dancing injuries,his creaking bad back but he did for the passion, love and enjoyment he got from dancing...

There must be something you must enjoy in life.

I have a suggestion.. Try librax. My gi dr prescribed it to me and on top of the pantoprazole I take it 3 times a day. Not only has the pain and spasms just about gone completely away, but it also is helping with the anxiety caused by my gi issues.. Just a thought

Acid reflux in your mouth usually doesn't burn, at least not for me it just leaves a really nasty taste in my mouth when I do burp it up. Another thing that is suggested by gerd sufferers, is not to drink liquid 30-60 minutes before bed, as this can sometimes make the acid in your stomach more liquefied and increase your chances of burping it up or it coming up when you lay down.