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Hi everyone,

I’ve been pantoprazole for a couple of years for acid reflux, but the past couple of months the acid came back a lot worse, even on the max dose. 

I tried most other ppis but they irritated my pots symptoms. Lansoprazole is the only one I’ve been able to tolerate. Initially it did help but after a couple of weeks now the acid is getting way worse again on the same dose. Been to Gastro and they’re confused why it would be happening. 

I don’t know what to do as I’m in so much discomfort and anything I eat causes more acid reflux. I can’t tolerate things like tums (calcium carbonate) for some reason it causes hypertension and can’t tolerate gaviscon either. 

Desperate for some relief as I’m loosing too much weight not being able to eat properly. 

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I'm sorry to hear that things have gotten worse lately.

I only get mild acid reflux compared to what you're describing. So, I can only imagine what you're going through.

The Zantac works for me. It's an H2 blocker because mine is allergy related. Do you have congestion? Or Allergies? When I get an allergic reaction, my mucous production goes off the charts, which messes with my stomach acid. I take Zyrtec as an H1 blocker, which helps with mucous and Zantac as an H2 blocker, which helps with my stomach.

Have you noticed any change in bowel movements? I know it's hard to tell when you can't eat much. But my bowel movements were one of the clues for my GI doc and allergists.

I wish I had more insight for you. I hope you find something that works.

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3 hours ago, Random-Symptom Man said:

I'm sorry to hear that things have gotten worse lately.

I only get mild acid reflux compared to what you're describing. So, I can only imagine what you're going through.

The Zantac works for me. It's an H2 blocker because mine is allergy related. Do you have congestion? Or Allergies? When I get an allergic reaction, my mucous production goes off the charts, which messes with my stomach acid. I take Zyrtec as an H1 blocker, which helps with mucous and Zantac as an H2 blocker, which helps with my stomach.

Have you noticed any change in bowel movements? I know it's hard to tell when you can't eat much. But my bowel movements were one of the clues for my GI doc and allergists.

I wish I had more insight for you. I hope you find something that works.

Thanks for replying, I tried Zantac a couple of times and it didn’t do anything. Also when I took it I got an adrenaline rush so I’m not sure if I’m sensitive to it. I sometimes get congestion but it hasn’t been too bad lately. 

Before the lansoprazole I was constipated but the past couple of days since the ppi has ‘stopped working’ I’ve been getting abdominal cramping and diarrhoea. And the acid seems worse than ever as I can feel it wearing the enamel away on my teeth! So frustrating, I don’t want to do more damage to my body. 

 

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@Clueingforlooks I was in the same boat before and took ppl twice a day, carafate four times a day, Zantac 300 mg at night, zofran as needed and gi cocktail as needed ( vicious lidocaine, mylanta and phenobarbital ). This improved the symptoms some but only when my POTS got under control did my GERD calm down. I would talk to the specialist that controls your POTS since you might benefit from a medication adjustment. This would also help with your adrenaline surges. 

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I have also had severe acid reflux at times that my POTS is also flaring.  I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues.

One thing that I remember helped me years ago was deglycerized licorice.  Not sure why but it was more effective than any heartburn medication for me.  Since this is an herbal supplement I would talk to doctor or pharmacist before using it.

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17 hours ago, Pistol said:

@Clueingforlooks I was in the same boat before and took ppl twice a day, carafate four times a day, Zantac 300 mg at night, zofran as needed and gi cocktail as needed ( vicious lidocaine, mylanta and phenobarbital ). This improved the symptoms some but only when my POTS got under control did my GERD calm down. I would talk to the specialist that controls your POTS since you might benefit from a medication adjustment. This would also help with your adrenaline surges. 

 

12 hours ago, MomtoGiuliana said:

I have also had severe acid reflux at times that my POTS is also flaring.  I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues.

One thing that I remember helped me years ago was deglycerized licorice.  Not sure why but it was more effective than any heartburn medication for me.  Since this is an herbal supplement I would talk to doctor or pharmacist before using it.

Thanks guys, my adrenaline is worse when my gi symptoms are bad but sometimes hard to say which comes first.

I’ve stopped the lansoprazole as I’m thinking that it has been giving me the diarrhoea as a side effect. I’m taking pantoprazole which is what I used that take before that. I can only hope it settles down to an extent. Very frustrating as other antacid options give me side effects or upset my gi due to additives. 

Unfortunately I can’t tolerate licorice as I’ve tried in the past as it gives me hypertension and makes my adrenaline worse.

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@Clueingforlooks do you have a gastroenterologist that you could discuss non-drug options with like fundoplication or the linx procedure if it is so severe & medications are not effective/tolerated?

https://www.linxforlife.co.uk/about-linx.html?gclid=EAIaIQobChMIsu3bhZDp5AIVw7TtCh049Qo_EAAYASAAEgJ5oPD_BwE

Before I became ill I was considering this. My omeprazole was (and still is) extremely effective but as I was young and had been on medication many years already, I would have preferred to not to have to take it for the rest of my life. It is no longer a consideration for me but it may be something you are interested in. 

PS I don't know if you are on any POTS medication but when I took fludrocortisone briefly that really aggravated my reflux (although I had been without my PPI for a couple of days at that time due to being in hospital).

B xxx

 

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I am just throwing out my own experience here.  Take it or leave it.  I had reflux before POTS caused by a pill not going down all the way and burning part of my esophagus.  I was put on ppis, just about all of them and I got severe diarrhea so it’s possible that is a side effect for you too.  When I was at my worst with dys I had what they thought might be GERD because I had severe pain in that area.  I told my gastroenterologist that it felt like I was eating glass.  After losing 20 pounds in 2 weeks because I couldn’t eat I was hospitalized and had an endoscopy.  No sigh of GERD or inflammation.  The gastro and dys neurologist decided it was neuropathy and I was put on gabapentin.  It took a couple of weeks to work while I was on TPN but it worked brilliantly.  I still take a low dose.  

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I've been trying to get someone to understand that my cardiac symptoms are related to digest issues (trapped gas in esophagus, hiatal hernia). PPIs have never worked for me though. Before I got hammered with all these autonomic and AI issues and it was just reflux, there was a chiropractor/nutritionist, who taught me how to eat (no white flour, dairy, less sugar) and everything went away for a year before the AI problems returning and just about a couple of years ago the reflux after the death of a pet. 

Anyway, just recently went back to the gastro and he suggested something called Gaviscon (sp?) because it doesn't block acid, but coats the opening of the esophgaus so there's no backup. He also said a lot of his patients have success with aloe vera juice, but because I'm an atypical case (I don't normally get the typical acid backup and no issues lying down, but lots of gas or pressure down the esophagus with tons of belching) it's going to be more experimentation. Maybe something he tells me can help some of you. 

I'm scheduled for an endo next week, which I actually have concerns about because they won't let me take my Sjogren's meds that morning and I know I'm going to be dehydrated. 

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@MTRJ75 my gastric was the one who actually clued me onto Dysautonomia in the first place. When you have unexplained gastro problems, and they’ve tried everything else, one of the things that is left is Dysautonomia. Sometimes when my hr goes up I have heartburn, or gastric emptying. It’s all haywire nervous system interactions. I Can see a bright light and have to dash (as best I can) to the bathroom. I can stand up, and it will feel like my bottom falls out. I Can have a stressful conversation trigger my gut.

My heartburn is correlated with my hr. 

Those of us with one type of Dysautonomia sometimes have multiple forms. It’s not all just pots. It would be much easier if it were.

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This is so true. I've gone the last few years believing that all my autoimmune issues were triggered by the microbiome. If fact, I blamed years of useless PPIs for an inability to properly digest. I've always been trying to fix the gut, fix the gut. Now I'm learning that maybe it's the other way around with the nervous system controlling the digestive system (along with other systems) as you say. 

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@MTRJ75 - I had GI problems, including absorption problems, since childhood but POTS did not become severe until I was 42. In my case I have both high and low BP, both hyperadrenergic POTS and NCS. When I am hyper and in a flare I deal with IBSD and GERD. When I am in the fatigue phase with low BP and fainting I tend to have more gastroparesis symptoms. The ANS controls both cardiovascular system and digestion, so the symptoms are all directly related to Dysautonomia in my case. 

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Thanks everyone, 

I do think it’s linked to my POTS in some way. Like @Pistol said I might be getting gastroparesis symptoms when my bp is low, which is more often than not these days! But not sure how I’m going to get my pots symptoms under control more than I’m already trying. 

I keep getting worried that I’ll vomit up my meds or not be able to take them in the morning as my nausea and reflux is the worst then. For a couple of hours in the morning I have to keep myself calm to make sure I don’t vomit. It’s miserable and the docs just don’t get it. A dietitian even said well if you still feel bad eating plain foods (low acid etc.) then you might as well eat everything because I’m low weight. Well nope because the foods I’m not having do make it even worse than it already is. So frustrating, she even told me to have chocolate!

 

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@Clueingforlooks when I first became unwell nausea and vomiting were a major issue, & I lost about 6kg in 3 weeks. 

I used mirtazapine off label as an antiemetic and it was more effective than any drug with a human licence for this purpose.

I also to this day find supplement drinks/protein shakes very useful, have you tried any of these?

B xxx 

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20 hours ago, bombsh3ll said:

@Clueingforlooks when I first became unwell nausea and vomiting were a major issue, & I lost about 6kg in 3 weeks. 

I used mirtazapine off label as an antiemetic and it was more effective than any drug with a human licence for this purpose.

I also to this day find supplement drinks/protein shakes very useful, have you tried any of these?

B xxx 

Sorry to hear you struggled with it. 

Thanks for the suggestion!

I think if I could get the actual acid reflux under control the nausea would go away. 

Unfortunately having protein drinks or even milkshakes make me feel just as awful. Also tried lactose free but no different. 

So confusing when the acid reflux meds just stop working for me after a while of taking them. 

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3 hours ago, Clueingforlooks said:

So confusing when the acid reflux meds just stop working for me after a while of taking them. 

Yes, it seems some people do develop a tolerance after a while & need to cycle meds. 

Have you got a good gastroenterologist to work with?

B xxx

 

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On 10/2/2019 at 1:23 AM, bombsh3ll said:

Yes, it seems some people do develop a tolerance after a while & need to cycle meds. 

Have you got a good gastroenterologist to work with?

B xxx

 

I’ve tried to cycle meds and and most gave me bad side effects. I could tolerate lansoprazole but after a couple of weeks still on it my acid reflux came back worse along with IBS diarrhoea!

ive got a gastroenterologist and he’s ordered me to have a gastric emptying study and a 24hr ph monitor (really don’t know how I’m going to stop taking meds for it as I already feel like I’m going to vomit after most meals). In the mean time though he doesn’t know what to do and I’m suffering not being able to eat properly. 😕 

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@Clueingforlooks - Good luck on your gastric emptying study. My study showed nothing. For some reason my body refused to do it's usual shenanigans. I didn't have any bowel issues for four days straight. It was the longest I've gone without issues in a year. Now that I think about it, I should sign up for a Gastric Emptying test every day if that's all it takes for my GI to behave.

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@Clueingforlooks it is good that you are being investigated, I hope it leads to a more productive treatment. 

I have had reflux since childhood (weak gastroesophageal sphincter due to EDS) which worsened after each pregnancy, but I was lucky to find omeprazole consistently effective. Boy do I know about it if I forget one though!

Good luck with your tests,

B xxx

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On 10/4/2019 at 11:41 PM, Random-Symptom Man said:

@Clueingforlooks - Good luck on your gastric emptying study. My study showed nothing. For some reason my body refused to do it's usual shenanigans. I didn't have any bowel issues for four days straight. It was the longest I've gone without issues in a year. Now that I think about it, I should sign up for a Gastric Emptying test every day if that's all it takes for my GI to behave.

Thanks! Having it this week. In a way I hope it does show something, at least it could explain some of my symptoms then. That’s so frustrating that it didn’t show anything on the day.

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On 10/5/2019 at 12:10 AM, bombsh3ll said:

@Clueingforlooks it is good that you are being investigated, I hope it leads to a more productive treatment. 

I have had reflux since childhood (weak gastroesophageal sphincter due to EDS) which worsened after each pregnancy, but I was lucky to find omeprazole consistently effective. Boy do I know about it if I forget one though!

Good luck with your tests,

B xxx

I sure hope it does! Any of the ppis seem to make my adrenaline worse for some reason and my acid eventually comes back along with worsened IBS. So frustrating,

Thank you x 

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On 10/5/2019 at 4:01 PM, Stark said:

Do you take any benzos? They have caused terrible reflux for me in the past 

No I don’t and I haven’t changed my meds when it started getting worse. Very confusing as to why it’s decided to be this bad now. Unsure if my pots is triggering it.

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  • 2 weeks later...

Update: gastric emptying study showed normal emptying. Still struggling a lot and my pantoprazole is still not helping enough. Nausea from the reflux is horrible all day :(. I guess I’ll try and get in to my Gastroenterologist again, don’t know what he can do so I can get some relief.

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@Clueingforlooks - I went through the same thing. EGD showed I was essentially being eaten by stomach acid yet Gastric Emptying study was normal. My GI said that I had digestive problems b/c my digestion was either in overdrive ( GERD, diarrhea ) or too slow ( gastroparesis, nausea, vomiting etc ), both caused by dysautonomia. I was able to get both somewhat controlled by medication, diet and lifestyle changes. 

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