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Clueingforlooks

Severe acid reflux

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I am sure there are whole forums related to the topic of reflux, so it might also be helpful to do some research on the specific topic.   Glad you are revisiting with doctor.   There are tons of treatments and sometimes if oe med doesn't work anymore it's time to switch it up.

I have had severe acid reflux at times and have been on meds for it on and off for years.  And I think what Pistol describes is the same for me - I either am too slow/backed up or too fast at different times.  What has helped me the most has been identifying foods that work for me.  There is a list of foods that is recommended for reflux. I can eat simple carbs and they help absorb the acid - rice, white bread, potatoes.  Not really considered healthy any more but they work for me.  Plain chicken also works. Jello.  Foods which are complex, heavy, fatty,  fiber rich, dairy make things worse for me, so I avoid them or spread out the times that I eat them.  Smaller amounts are better.  

 

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On 10/19/2019 at 10:52 AM, Pistol said:

@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. 

Can relate! I have had both too fast or too slow digestion all this year. Glad you could get yours under control as much as possible. 

Medications that I’ve tried and don’t work/give me more side effects

lansoprazole, nexium, omeprazole, aciphex, quickeze/tums, gaviscon, Mylanta, anti nausea meds and ranitidine. (Still on max dose of pantoprazole for now even though it only helps a bit).

Not sure where to go from there in terms of at least band-aiding the discomfort for now. 

What lifestyle changes helped your reflux?

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7 hours ago, yogini said:

I am sure there are whole forums related to the topic of reflux, so it might also be helpful to do some research on the specific topic.   Glad you are revisiting with doctor.   There are tons of treatments and sometimes if oe med doesn't work anymore it's time to switch it up.

I have had severe acid reflux at times and have been on meds for it on and off for years.  And I think what Pistol describes is the same for me - I either am too slow/backed up or too fast at different times.  What has helped me the most has been identifying foods that work for me.  There is a list of foods that is recommended for reflux. I can eat simple carbs and they help absorb the acid - rice, white bread, potatoes.  Not really considered healthy any more but they work for me.  Plain chicken also works. Jello.  Foods which are complex, heavy, fatty,  fiber rich, dairy make things worse for me, so I avoid them or spread out the times that I eat them.  Smaller amounts are better.  

 

I’ve tried pretty much all the ppis and ranitidine and they all cause bad side effects (IBS, more nausea or worsening pots). 

Yeah most of my diet now consists of mostly rice, porridge, chicken, turkey and veg. I don’t think there’s much else I can change in terms of diet and it hasn’t claimed down my stomach much. I’ve tried all the basic acid reflux prevention lifestyle changes and it hasn’t made a dent in my symptoms annoyingly. 

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@Clueingforlooks - lifestyle changes are mostly avoiding overstimulation and staying at home, this has helped both POTS and GERD.  Of course - I am disabled, so I can do that. Also following a daily routine of rest and activity/ exercise has been very effective. 

My friend - who suffered all of her life from severe GERD and IBS and has been unaffected by GI medications - just had a fundoplication and she is doing great. She told me she just used hot sauce for the first time in forever and had no heartburn.  Have you talked with your doctor about this procedure before? I am not sure if this would be something they would recommend for you but it does not hurt to ask! 

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19 minutes ago, Pistol said:

@Clueingforlooks - lifestyle changes are mostly avoiding overstimulation and staying at home, this has helped both POTS and GERD.  Of course - I am disabled, so I can do that. Also following a daily routine of rest and activity/ exercise has been very effective. 

My friend - who suffered all of her life from severe GERD and IBS and has been unaffected by GI medications - just had a fundoplication and she is doing great. She told me she just used hot sauce for the first time in forever and had no heartburn.  Have you talked with your doctor about this procedure before? I am not sure if this would be something they would recommend for you but it does not hurt to ask! 

I do avoid overstimulation as I’m pretty much housebound due to the rest of my symptoms. 

Yeah an operation is last resort for me especially since I’ve had two operations in the past and it was difficult to recover from them and I’ve had different symptoms (mostly more severe) with my pots ever since. My doc has mentioned to me about the operation. I guess we’re still trying to work out why it has gotten so bad. It’s pretty hard to cope with the gi issues at this stage on top of my normal pots symptoms :( 

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I had moderate acid reflux and what helped me was a combination of pepcid and baking soda

The pepcid only did about 60% of the job and the baking soda did the rest

I take the pepcid in 3 doses throughout the day, seems to work best that way

I take about 1/4 tsp baking soda mixed in water maybe 6-7 times spread throughout the day

the baking soda is also very useful for managing when the reflux happens in the middle of the night, super quick relief

If you try it, you have to be careful not to take it too close to a meal (I typically wait about an hour) as someone once died from that (I think that is a super rare thing to happen though). I would ask your dr if you are concerned about that.

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19 hours ago, Clueingforlooks said:

I’ve tried pretty much all the ppis and ranitidine and they all cause bad side effects (IBS, more nausea or worsening pots). 

Yeah most of my diet now consists of mostly rice, porridge, chicken, turkey and veg. I don’t think there’s much else I can change in terms of diet and it hasn’t claimed down my stomach much. I’ve tried all the basic acid reflux prevention lifestyle changes and it hasn’t made a dent in my symptoms annoyingly. 

Ask your doctor but if you are eating things with fiber - vegetables or porridge -- that could be making things worse for you.  

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On 10/21/2019 at 2:28 AM, POTSius said:

I had moderate acid reflux and what helped me was a combination of pepcid and baking soda

The pepcid only did about 60% of the job and the baking soda did the rest

I take the pepcid in 3 doses throughout the day, seems to work best that way

I take about 1/4 tsp baking soda mixed in water maybe 6-7 times spread throughout the day

the baking soda is also very useful for managing when the reflux happens in the middle of the night, super quick relief

If you try it, you have to be careful not to take it too close to a meal (I typically wait about an hour) as someone once died from that (I think that is a super rare thing to happen though). I would ask your dr if you are concerned about that.

Yeah I can’t really tolerate baking soda with my pots. Makes my adrenaline worse, I think too much sodium at once even if it’s a little bit. And I can’t try Pepcid because it interacts with one of my meds unfortunately. Still super struggling, seems like the longer I take a ppi the more my reflux starts to come back and get much worse. Still unsure if it’s my nervous system/adrenaline making it worse but surely the ppi should consistently help and not become ineffective. 

 

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I have had severe reflux for years, and ironically it was Aloe Vera capsules that calmed things down considerably.  I was taking them for Interstitial Cystitis, and noticed that I wasn't having the same symptoms anymore.  I still get reflux, but not as bad as before. I also have elevated the head of my bed about two inches and make sure not to lie down after eating.  If I do have to lie down, laying on the left helps with stomach emptying a bit better.  I saw where someone recommended  the deglycyrrhizinated form of licorice (DGL) It won't affect your blood pressure, as regular licorice would. I take two chewable ones before bed and they really soothe the esophagus area. It must be awful to be so constricted in what you can take for this!    

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