Anything help acid reflux?

[outofadream]

I’d desperately like to know if any of you who have very stubborn acid reflux have found anything that truly helps you, and if so, what?

I’d also be curious if treating your POTS ever helped with the reflux as well. My POTS symptoms and heartburn symptoms started at exactly the same time, so I’ve always assumed they were related somehow.

The pain and miserable acid taste have just been so frustratingly stubborn over the years…it happens multiple times every single day, and many days even the simple act of drinking water sets it off.  The only time it shuts up is when I sleep.

So, I’ve been on PPI’s (as well as H2 blockers and antacids) for many years now, which is NOT what I wanted. Yet, every time I try to taper down, the rebound is so severe that I absolutely can’t function within a day or two. I know too that there are risks with having heartburn for so long, which weighs on my mind a lot.

So if there’s anything that’s genuinely helped any of you, I’d really like to know!

[Guest KiminOrlando]

My heartburn was from gastroparesis. I got meds for that and my heartburn became manageable with omeprazole. Good chance you have some percentage of gastroparesis and until that is considered, the acid reflux will remain. 

I used to get acid reflux from drinking water too. What a miserable feeling...

[Pistol]

@outofadream - I too suffer from severe GI symptoms from POTS. At my worst I had espophagitis, Barrett's esophagus and duodenitis from it. I am now much better - once my POTS got somewhat under control so did the GI issues. What has helped me in the past - in addition to PPI twice daily, which I still take - was GI cocktail ( Phenobarbital, Mylanta and viscous lidocaine ) as needed, Carafate suspension, several nausea meds and - most importantly - dietary adjustments. I eat 6 snacks  day instead of 3 meals, avoid all raw fruit and veggies and all acidic foods. Since then I had 2 EGD's and all is well, my GERD has greatly improved. I hope you get better soon - I know how hard it is to live with these symptoms!!! Be well.

[bombsh3ll]

I have also been on omeprazole for many years, I had acid reflux long before POTS & it hasn't changed. 

When I was healthy though, I did not want to be on PPI medication for life and was considering a procedure, either fundoplication or LINX, both of which tighten up the gastroesophageal junction and stop the acid from coming back up. 

That is not a consideration for me now, taking omeprazole (which is effective for me) is the least of my concerns, but if your situation is different you could speak to a GI specialist about more definitive non-drug options, because they do exist and are highly valuable where appropriate.

Another thought - are you on any medication for POTS which could worsen it such as fludrocortisone? 

B xxx

[outofadream]

Thank you all so much. It's especially helpful to know there's some hope it could still improve.

@KiminOrlando I'm so sorry you had to deal with the reflux after drinking water too! They actually tested me for gastroparesis maybe 4-5 years after the POTS/reflux issues started, and it came back clean then. They did find abnormally slow small bowel motility though...the doctor didn't seem to know if that was significant, because I don't really have the symptoms they would conventionally see associated with that. But if there is some dysmotility, I have wondered sometimes if that could be adding to the reflux issues.

@Pistol, that sounds like a nasty combo all right I'm really glad you got some relief! You have hyperPOTS right? I have wondered if there's some link with adrenaline for my heartburn issues, but I'm not sure.  Carafate really helped in the past too. The problem at the moment seems to be that the acid is making it into my throat, and the Carafate doesn't coat high enough to stop it. Gaviscon helps more with that, but I need to find a better way to take it long term (the version I've been using isn't really supposed to be used indefinitely). How did you find out that the raw fruits and veggies were making your symptoms worse (or that avoiding them helped)? I really appreciate all the info!

@bombsh3ll  I have a feeling antireflux surgery or other related procedures probably aren't an option for me either, although I'm planning to ask my doctor to be sure. I'm assuming you haven't run into any other non-drug options? The PPI's have certainly helped, but I'm still just having so much breakthrough on them.  I do also worry about the long term side effects, but I also know going off of it may just not be an option for me either. It's a good question about the other meds...I'm not on fludrocortisone, but I've suspected a couple of them (mainly the magnesium and beta blocker) are making it mildly worse. Really, though, it was bad even before I started any of them. The only one I've really wondered about is actually the allergy med, of all things. For some reason, within a short time of starting that, things took a turn for the worse. I've just never heard of zyrtec causing heartburn though, so it may be completely unrelated. Either way, I really appreciate your input!

[Pistol]

@outofadream - 

12 hours ago, outofadream said:

How did you find out that the raw fruits and veggies were making your symptoms worse (or that avoiding them helped)?

I saw a nutritionist since I hardly could eat anything without setting off the reflux. I too get it bad from water - I only drink gingerale, that helps me and I tolerate it better. The nutritionist told me that it is OK to steam or simmer veggies - I always thought they would loose their nutrition but she said as long as we consume the water they were heated in we still get most of the nutrients. It has made a huge difference! On days when I do not get enough veggies in I take a high quality liquid nutritional supplement. Have you tried elevating the head of your bed to avoid reflux at night? --- The GI cocktail and Carafate slurry really helped me with the reflux into the throat since they are both liquid and coat the esophagus, not only the stomach. 

[bombsh3ll]

14 hours ago, outofadream said:

I've just never heard of zyrtec causing heartburn though, so it may be completely unrelated.

This is just a thought, not proven scientifically as far as I am aware, but zyrtec is a H1 antagonist, and the common antacid med zantac is a H2 antagonist. 

If you are blocking H1 receptors, theoretically this could leave more histamine to bind to the H2 receptors, which stimulate gastric acid production. 

Whilst I do not know if this phenomenon occurs with histamine receptors, it is well recognized with beta blockers that if you block adrenaline/noradrenaline's beta receptors, more will bind to the alpha receptors, hence the peripheral vasoconstriction & cold extremities. 

B xxx

[outofadream]

@Pistol I've been wondering if a nutritionist is a possibility. That's interesting about the gingerale, I think I'll try that and see if it makes any difference! I did try elevating the head of my bed. I think it helps slightly (and the lying on the left side rather than the right). Seriously, thank you for sharing all of this.

@bombsh3ll That's fascinating about beta blockers! I always wondered what the mechanism was behind the cold hands, since that seemed like the opposite effect to what one would expect. Now it makes sense. It's an interesting thought about the Zyrtec too. Again, thank you for all the info!

[potsiebarbie]

Magnesium! Good quality magnesium supplement. Not oxide or citrate. More along the lines of glycinate. Dosed throughout the day. PPIs not only weren't very affective for me but they drained my body of magnesium. 

[sarajoness]

if you want to Know What Kinds of Food For Avoid with Acid Reflux  https://remedyto.com/foods-to-avoid-for-acid-reflux/

 

[Clueingforlooks]

@outofadream how are you going now with this? I’m struggling with the same thing  and my ppi doesn’t help me enough anymore xx

[PotsieCrocheter]

I would also be interested in how outofadream and others are doing with reflux. I just realized my reflux issues have completely resolved since I’ve been treated for POTS. 

In the past I tried everything, and the only thing that helped (a tiny bit) was avoiding things like dark chocolate, spicy foods, etc. I had so little food choices because of reflux and also from IBS, lactose/gluten sensitivities.

[HCD77]

Have you tried DGL licorice? This usually works for me. It helped me get off PPI too. PPI have terrible rebound reflex like you said. I was only on them for 2 weeks. Also Kefir helps. 
 

Dr. Andrew Weil recommends these. 

• Use DGL (deglycyrrhizinated licorice). Slowly chew two tablets or take a half-teaspoon of the powder before or between meals and at bedtime. Taper your dose down after your symptoms are under control.
• Consider slippery elm. It can heal irritated digestive tract tissues.

[Clueingforlooks]

17 hours ago, PotsieCrocheter said:

I would also be interested in how outofadream and others are doing with reflux. I just realized my reflux issues have completely resolved since I’ve been treated for POTS. 

In the past I tried everything, and the only thing that helped (a tiny bit) was avoiding things like dark chocolate, spicy foods, etc. I had so little food choices because of reflux and also from IBS, lactose/gluten sensitivities.

What have you been treated with for your POTS? I’ve been on fludro and propranolol for agesss (and at differing dosages) but my bp and adrenaline are all over the place now and haven’t been able to control the reflux/gastritis. I’ve also tried midodrine in past and can’t tolerate it anymore. 

[DADofPotsSon]

My Dr. prescribed PPI and I took it for about 2 months and then read an article on how chewing Eclipse gum can help so I tried that method instead and it does help!  It is sugar free and that is good since I am a diabetic too.  Maybe you could try it too?  It is a cheap method, maybe it would work?  They also told me to quit drinking coffee as that was a contributor, but that is not going to happen, been drinking it since I was 10 and I now am 67.

DADofPotsSon

[PotsieCrocheter]

21 hours ago, Clueingforlooks said:

What have you been treated with for your POTS? I’ve been on fludro and propranolol for agesss (and at differing dosages) but my bp and adrenaline are all over the place now and haven’t been able to control the reflux/gastritis. I’ve also tried midodrine in past and can’t tolerate it anymore. 

I’m on the typical pots meds, a bit different than what you listed. Plus salt and water and some SaltSticks as prescribed. I’m not comfortable disclosing the exact ones. I did get the impression from a medical journal that one of them could help with reflux, but I’m no expert in interpreting medical research papers. 

I hope you and others can eventually find something that helps with reflux. I’m sorry that you deal with gastritis too. I read it can cause nausea? I can’t imagine it added to the nausea POTS can cause when upright, that’s like a double whammy. My IBS is still out of control, but I reduced the extreme bloating by restricting gluten and milk (yogurt, aged cheddar, quinoa, and oats are fine for me).

BTW: my blood pressure fluctuates a lot too. My specialist told me not to worry about it so much, after I showed him the range. That’s just my experience, but other patients might be under the advice to check theirs. I still do if I’m feeling extra odd. (feeling “odd” is my typical, but “extra odd” these days is more and more uncommon 😀) 

I’ve read that everybody’s blood pressure can fluctuate for a long list of reasons, every day. This brought me comfort knowing. I also found out that my particular home blood pressure machine is designed for reading blood pressure sitting still with your arm supported. I gave up using mine in other positions (WITH the help of my husband in case of dizziness, etc), due to error messages and strange results that weren’t duplicated in professional settings. Maybe best to check with the instructions, call the manufacturer or as for everything I’ve said above, check with your doctor. 

 

[Clueingforlooks]

On 7/1/2020 at 4:49 PM, PotsieCrocheter said:

I’m on the typical pots meds, a bit different than what you listed. Plus salt and water and some SaltSticks as prescribed. I’m not comfortable disclosing the exact ones. I did get the impression from a medical journal that one of them could help with reflux, but I’m no expert in interpreting medical research papers. 

I hope you and others can eventually find something that helps with reflux. I’m sorry that you deal with gastritis too. I read it can cause nausea? I can’t imagine it added to the nausea POTS can cause when upright, that’s like a double whammy. My IBS is still out of control, but I reduced the extreme bloating by restricting gluten and milk (yogurt, aged cheddar, quinoa, and oats are fine for me).

BTW: my blood pressure fluctuates a lot too. My specialist told me not to worry about it so much, after I showed him the range. That’s just my experience, but other patients might be under the advice to check theirs. I still do if I’m feeling extra odd. (feeling “odd” is my typical, but “extra odd” these days is more and more uncommon 😀) 

I’ve read that everybody’s blood pressure can fluctuate for a long list of reasons, every day. This brought me comfort knowing. I also found out that my particular home blood pressure machine is designed for reading blood pressure sitting still with your arm supported. I gave up using mine in other positions (WITH the help of my husband in case of dizziness, etc), due to error messages and strange results that weren’t duplicated in professional settings. Maybe best to check with the instructions, call the manufacturer or as for everything I’ve said above, check with your doctor. 

 

Thanks @PotsieCrocheter it definitely is frustrating! If my stomach wasn’t so sensitive between having gastritis and acid reflux AND nausea I think I would be able to hydrate better and hence feel a bit better with my pots e.g. a dash of cordial usually helps me but hurts my stomach now along with other electrolyte drinks. 
Yes I our bp can be all over the place! I guess my main problem is that my bp can get quite low at night 75/45 at the lowest and then even if my bp is acceptable I still end up feeling pretty faint during the day and can’t think straight. The docs I’ve been to have been useless about it 😒

 

[Pistol]

@Clueingforlooks - Zofran ( Ondansetron ) 4 times a day has helped me through my worst times with nausea.  

[Clueingforlooks]

2 minutes ago, Pistol said:

@Clueingforlooks - Zofran ( Ondansetron ) 4 times a day has helped me through my worst times with nausea.  

Tried numerous anti nausea meds and even IV Anti nausea when I’ve been in hospital but nothing makes a difference 😕 xx

[PotsieCrocheter]

@Clueingforlooks I too tried anti-nausea meds orally and through IV and I just got loopy and dizzy. The only thing that helps me (if you can believe it) is Mango flavoured Chimes Ginger Chews. For mild nausea sometimes I replace some of my table salt for a saltstick Zesty Lemon Lime Fast-chew. It really is that specific with the flavours, I’ve got it down to a science! 😀

I’m sorry you have so much nausea and that it affects your rehydration. I’ve found keeping super hydrated so important in POTS. I had nausea so badly before I got headache and POTS treatment, and when I had bouts of Meneire’s (rarely now). I just tend to get positional vertigo these days. 

On a bit more positive/different topic: I got my BOTOX treatment by my neurologist today for my headaches and I finally found the energy to put on my compression thigh-highs, and they helped. I could never come home and think straight like I am now. 

[Clueingforlooks]

11 hours ago, PotsieCrocheter said:

@Clueingforlooks I too tried anti-nausea meds orally and through IV and I just got loopy and dizzy. The only thing that helps me (if you can believe it) is Mango flavoured Chimes Ginger Chews. For mild nausea sometimes I replace some of my table salt for a saltstick Zesty Lemon Lime Fast-chew. It really is that specific with the flavours, I’ve got it down to a science! 😀

I’m sorry you have so much nausea and that it affects your rehydration. I’ve found keeping super hydrated so important in POTS. I had nausea so badly before I got headache and POTS treatment, and when I had bouts of Meneire’s (rarely now). I just tend to get positional vertigo these days. 

On a bit more positive/different topic: I got my BOTOX treatment by my neurologist today for my headaches and I finally found the energy to put on my compression thigh-highs, and they helped. I could never come home and think straight like I am now. 

That’s good you’ve found some things to help your nausea! Hope I can eventually find something that helps enough, I have tried ginger candies and tea before. 
 

oh nice! It’s the worst not having the energy to put compression on even though they can help. 

I’m struggling so much with fatigue lately, too tired to even talk or move. But my vitals look fine at the time. I know I need to rest some of the time but I’m having to rest/do nothing everyday and being too fatigued to function is not getting me anywhere. 

[Pistol]

@Clueingforlooks - it sounds like you might be in a full-on flare. It looks the same for me: extreme fatigue and low energy, Reflux and constant nausea, diarrhea, weakness, orthostatic intolerance, shortness of breath, brain fog and other cognitive issues .... unfortunately rest and avoidance of overstimulation is necessary to get over it, and patience. In my case the only thing that brings me right back are IV fluids - foolproof instant fix. 

For the GI issues: when I was at my worst my GI put me on GI cocktail. It's a mix of Mylanta, viscous lidocaine and Phenobarbital ( or Donnatal ) that calmed the GI tract down really well for me. Once the Flare was over my GI system went back to normal every time. 

[Clueingforlooks]

12 hours ago, Pistol said:

@Clueingforlooks - it sounds like you might be in a full-on flare. It looks the same for me: extreme fatigue and low energy, Reflux and constant nausea, diarrhea, weakness, orthostatic intolerance, shortness of breath, brain fog and other cognitive issues .... unfortunately rest and avoidance of overstimulation is necessary to get over it, and patience. In my case the only thing that brings me right back are IV fluids - foolproof instant fix. 

For the GI issues: when I was at my worst my GI put me on GI cocktail. It's a mix of Mylanta, viscous lidocaine and Phenobarbital ( or Donnatal ) that calmed the GI tract down really well for me. Once the Flare was over my GI system went back to normal every time. 

Thanks, hopefully I can get my gi and fatigue to calm down soon! To be honest I practically feel like I’m in a never ending flare whatever I do  IV fluids used to help me but now they overstimulate my system (even running slow).

[PotsieCrocheter]

On 7/7/2020 at 3:06 AM, Clueingforlooks said:

oh nice! It’s the worst not having the energy to put compression on even though they can help. 

I’m struggling so much with fatigue lately, too tired to even talk or move. But my vitals look fine at the time. I know I need to rest some of the time but I’m having to rest/do nothing everyday and being too fatigued to function is not getting me anywhere. 

Only a person with POTS and/or ME/CFS wouldn’t question why putting on compression garments could take so much energy! 😩

I totally relate to severe fatigue, I live with it as a constant. I wait to do things when I’m a bit less fatigued, but the fatigue is always there. It gets even worse after doing everyday, very basic things and for days after doctor appointments. (I have POTS and ME/CFS, etc). I’m sorry that lately you’ve been so fatigued to even talk or move.

My autonomic specialist told me six months ago to sit upright as much as I can, instead of lying down as much. He said when he first met with me that he would prefer me reclining in a chair while resting/sleeping during the day than lying flat.  I understand it helps the body get used to gravity and react less badly to it. I’ve found this advice very challenging, yet it’s very slowly paying off. I’m now more comfortable sitting upright for longer periods of time. 

BTW: I initially learned to crochet horizontally. When I was even more severe (prior to treatment) I did 60’s style black velvet colouring with felt pens and kids sticker books in bed. It took the least energy of other creative things I attempted along the way. They were very tactile, something that tablets/iPads lack.

Edited July 10, 2020 by PotsieCrocheter
adding some inspiration + brain fog

[Clueingforlooks]

57 minutes ago, PotsieCrocheter said:

Only a person with POTS and/or ME/CFS wouldn’t question why putting on compression garments could take so much energy! 😩

I totally relate to severe fatigue, I live with it as a constant. I wait to do things when I’m a bit less fatigued, but the fatigue is always there. It gets even worse after doing everyday, very basic things and for days after doctor appointments. (I have POTS and ME/CFS, etc). I’m sorry that lately you’ve been so fatigued to even talk or move.

My autonomic specialist told me six months ago to sit upright as much as I can, instead of lying down as much. He said when he first met with me that he would prefer me reclining in a chair while resting/sleeping during the day than lying flat.  I understand it helps the body get used to gravity and react less badly to it. I’ve found this advice very challenging, yet it’s very slowly paying off. I’m now more comfortable sitting upright for longer periods of time. 

BTW: I initially learned to crochet horizontally. When I was even more severe (prior to treatment) I did 60’s style black velvet colouring with felt pens and kids sticker books in bed. It took the least energy of other creative things I attempted along the way. They were very tactile, something that tablets/iPads lack.

Sorry to hear you struggle with daily fatigue too, if I could just be a tiny bit more functional I’d be so happy but I’ve had no progress for over a year. 
Yes I try and sit up in bed all day/as much as I can, but recently I’m more exhausted/tired and well as fatigued so it is hard. Good to hear that it’s helping though. And I hope it can can helping you, it’s hard to tell sometimes if something is making a difference or not. 

That’s a great idea! Although even doing arm movements for me sometimes just feels like too much, but I do things here and there if I can.