Moderate to Severe GI symptoms with POTS

[Abjadeya]

Hello everyone, 

I get really bad upper GI symptoms (sometimes lower too) like nausea, heartburn, indigestion, loss of appetite, dry heaving and more. The nausea is sometimes so bad that combined with other POTS symptoms, it makes it hard to do basic daily activities. I have a Zofran prescription - so I take that when it's intolerable. But I can't take it often because it gives me severe constipation, which I try to avoid. Does anyone have similar symptoms - if yes - what helps? Are there any home remedies I should know about? or any specific foods I should try eating (or avoiding?) I have already cut out triggers like sugars, and I am currently on a high protein diet. 

[Pistol]

POTS caused the same symptoms for me to the degree that the reflux got so bad that the lining in my esophagus became pre-cancerous. The nausea was as bad as you describe it. I took Zofran then Phenergan then Compazine.  What ended up helping me was Protonix 40 mg 2x daily. I still take Zofran as needed.

[Mistri_The_Squirrel]

I don't have the symptoms you're having, but I want to tell you that chronic heartburn is something not to be taken lightly. 

As @Pistol mentioned, acid reflux can cause the lining of your esophagus to become pre-cancerous.  It is called Barrett's Esophagus and it can be treated...as long as you know you have it.  Taking medication for your heartburn will not prevent esophageal cancer if you already have Barrett's.  The only way you can know if you have Barrett's is to get an endoscopy.

It is important that you consult a gastroenterologist about this, as they are the doctors who will be able to give you proper advice about how to control the situation and avoid getting cancer.  Because you have POTS it will probably be harder to get your digestive symptoms under control.  Best to see an expert on the digestive system so it does not progress to something worse.  Your primary care physician or your POTS doctor may not be fully aware of how dangerous heartburn can be.

I'm not trying to be an alarmist, but I lost my dad to esophageal cancer.   The doctors he saw in the years before his diagnosis didn't know enough about it to recognize that he was in danger.  Esophageal cancer used to be a rare disease, but it no longer is.  My dad had a cough that was written off by doctors as bronchitis.   He was also given a prescription medication for heartburn by his primary care physician, who did not order an endoscopy.   By the time he had trouble swallowing he was already terminally ill.  You wouldn't have known from looking at him.  I wish someone had told me what I know now.

For more info, you may want to have a look at ecan.org.   I trust their site above others.   ECAN has a board of doctors who provide the information for their site.  

I don't mean to upset anyone; I just don't want anyone to die because of what they didn't know.   

 

[GardenGal]

6 years a go, I could have written that post! Sounds so familiar! I hope it's encouraging for you that the GI symptoms (especially the nausea, wrenching, weight loss and heartburn) are SOOOOOOO much better than they were.  I just thought I'd pipe in with that, because sometimes I find that the progressive or ongoing trajectory of this illness can be so discouraging. But that is one area that I'm so thankful to have had marked improvement. May it be for you too! PS: I do take LOT of vitamin C - it's the only thing that works for me with the constipation. 

[yogini]

Each person has different triggers. You may want to try eliminating certain foods and see if it helps you feel better.  

[toomanyproblems]

Gastroparesis is common with POTS. Your symptoms could be caused by that. I would go to a gastroenterologist and tell him you read they are commonly seen together if he doesn't consider it first. Mine had no idea but I ended up having it bad before it was finally diagnosed (in the hospital two weeks) even though I pointed out the possibility to him. 

Every warning about esophageal cancer stated here is accurate. My grandfather died from it.

[KiminOrlando]

Acid Reflux can also contribute to Interstitial Lung Disease.

I have gastroparesis too. My doctor put me on a med called Domperidone and it changed my life. Many doctors won't use it because it isn't FDA approved and has to be compounded in the US. It is more widely used in Canada and the UK.

I now have Interstitial Lung Disease. Don't mess around with Acid Reflux. It sounds harmless... just take some Tums. Nope.

[Bluebonnet08]

Birth control pills made my stomach problems horrific with POTS.  After I stopped the pill, my stomach issues improved greatly.  I also had to stop all types of dairy for a few months, but I eat it now.  The pill has lactose in it, so I am not sure if that was contributing.  Lots of medications are lined with lactose and for some reason that seemed to trigger my stomach issues with POTS.  

[Weyland]

Not much nausea for me but I get episodes where my stomach feels full and I can eat . My appetite has also pretty much gone away over the last few months . I cant eat nearly as much as i could before i got sick . I miss eating a big meal..These things seem to get worse over time with dysautonomia....

[Abjadeya]

Thanks y'all! I have had extensive GI testing, because that's how my POTS started presenting itself at the beginning. I have done ever GI test out there - my latest were only last year - I have been cleared from Barett's thank god. My GI doctor was so fed up of me she put me on B12 and vitamin D supplements and sent me on my way. I have GERD; that's the only official GI diagnosis I got. Thank you for that @Mistri_The_Squirrel , i completely agree with you, which is why i kept persistently going back to the GI doctor.  I am terribly sorry about your dad. @Pistol I have been on nexium before, I will talk to my doctor about protonix. Right now, I take Tums but I am not sure how effective it is right now, but thats child's play. I didn't realize that GERD could actually be so degenerative, thank you both for making that clear. I am on Zofran as needed. 

[Abjadeya]

On 2/22/2018 at 1:35 AM, GardenGal said:

6 years a go, I could have written that post! Sounds so familiar! I hope it's encouraging for you that the GI symptoms (especially the nausea, wrenching, weight loss and heartburn) are SOOOOOOO much better than they were.  I just thought I'd pipe in with that, because sometimes I find that the progressive or ongoing trajectory of this illness can be so discouraging. But that is one area that I'm so thankful to have had marked improvement. May it be for you too! PS: I do take LOT of vitamin C - it's the only thing that works for me with the constipation. 

I am so glad you posted this  - it gives me hope <3!

[Mistri_The_Squirrel]

17 hours ago, Abjadeya said:

Thanks y'all! I have had extensive GI testing, because that's how my POTS started presenting itself at the beginning. I have done ever GI test out there - my latest were only last year - I have been cleared from Barett's thank god. My GI doctor was so fed up of me she put me on B12 and vitamin D supplements and sent me on my way. I have GERD; that's the only official GI diagnosis I got. Thank you for that @Mistri_The_Squirrel , i completely agree with you, which is why i kept persistently going back to the GI doctor.  I am terribly sorry about your dad. @Pistol I have been on nexium before, I will talk to my doctor about protonix. Right now, I take Tums but I am not sure how effective it is right now, but thats child's play. I didn't realize that GERD could actually be so degenerative, thank you both for making that clear. I am on Zofran as needed. 

Thanks, @Abjadeya.  I'm glad to hear you are being so proactive and keeping on top of your symptoms.  It does sound like you might benefit from seeing a GI doctor who isn't "fed up" with you though.  I've found that once a healthcare professional seems to be exasperated, they become far less helpful.  It's like they shut down and write you off, and that is no good.  Wondering if your dysautonomia specialist (if you have one) knows of a GI doc who would be more helpful.  

[Abjadeya]

I think I am going to have to do that @Mistri_The_Squirrel. Though my nausea is significantly better, my acid reflux is terrible. I just went off nexium and technically can't take any more. I, unfortunately, don't have a POTS specialist yet. I have been on several waiting lists to be seen. My appointment is in September :(. 

[Pistol]

@Abjadeya - what I have been prescribed before for my excessive GERD is: Carafate 1000 mg, Protonix 40 mg 2 x day, GI cocktail (Maalox, phenobarbital, lidocaine), Zofran, Compazine and most recently Zantac 300 mg. I see a GI specialist and my GI symptoms from dysautonomia are very bad, but with a mixture of some of these meds as well as a low acid diet I can manage. 

[Peter Charlton]

What has really helped reduce my acid reflux is these https://www.amazon.co.uk/Gordon-Elephant-Raiser-5-5-inch-Eligible/dp/B006ON520U/ref=sr_1_2_a_it?ie=UTF8&amp;qid=1527801725&amp;sr=8-2&amp;keywords=elephants+feet&amp;dpID=418GDCq2XfL&amp;preST=_SY300_QL70_&amp;dpSrc=srch

Obviously you only use a pair, they are really stable, I used to wake up in the night to reach for the Rennies, no longer, and my year long cough is almost gone.

All my GP did about my cough was to say it must be heartburn, no follow up or additional tests, even though I said how bad it was. I was prescribed Zofran, but it did absolutely nothing for me, when I told the GP she said, "well you've only been taking it for a month", I prefer the way Rennies work instantly.

[blizzard2014]

On ‎2‎/‎22‎/‎2018 at 8:28 AM, KiminOrlando said:

Acid Reflux can also contribute to Interstitial Lung Disease.

I have gastroparesis too. My doctor put me on a med called Domperidone and it changed my life. Many doctors won't use it because it isn't FDA approved and has to be compounded in the US. It is more widely used in Canada and the UK.

I now have Interstitial Lung Disease. Don't mess around with Acid Reflux. It sounds harmless... just take some Tums. Nope.

You get lung disease from aspirated food going into your lungs. I used to have severe heartburn in my 20's, but just really bad burning in my stomach that I would eat tums day and night to control. It them went away, but now it is back. But not always the severe burning. If I lay down, sometimes I will wake up after burping a huge stream of food and acid into my throat. It burns like heck and I have to drink water to get it back down. I think that is what causes the lung issues when you swallow that crud. I went on 20 mgs of Omeprazle per day after I woke up one night vomiting green bile liquid. I haven't have the vomiting green bile since, but if I eat too much, I still burp up undigested food in my sleep; even if it has been several hours since my last meal. I also feel full quick, but I love food soo much that I continue to shovel it down any how. 

[StayAtHomeMom]

I had a lot of issues you describe. I got an upper gi scope and everything was normal. I take rolaids with gas relief as needed (bad reaction to prilosec and zantac) i noticed if i cut out carby/bready stuff for a while i feel better. My mother in law is pushing for me to do Keto and i may just because i felt better without bready stuff. I use liquid probiotics (kefir) to also help my stomach issues. This stuff helps make it manageable. I hope you find the right balance assuming nothing else is going on. Good luck!

[Abjadeya]

Thank y’all for your support and for sharing what works for you. To be honest these forums have given me more help, support and understanding than any doctor I have been to ❤️. I am going back on Nexium tomorrow. I may try sleeping a little elevated like you said @Peter Charlton ... the only issue with that is that my pots symptoms are better when my legs are elevated while I am flat on my back, so I am going to have to choose lol. I take Zofran when my nausea is intolerable. It does nothing for heartburn and it gives me terrible constipation so I only take it when I feel like death. I am sorry your GP is not more attentive. My GI doctorS weren’t very helpful. My GP kinda dismisses this issue too. But they were like yeah you have GERD it’s no big deal. They did nothing to address it. It was my idea to try Nexium. 

You know @blizzard2014 I do get strange full / hunger feelings that just don’t make any sense. Like I feel hunger pains the min I finish eating, knowing that I am not actually hungry. I sometimes feel very full when I am really hungry - my signals are all over the place.  I hope you feel better! 

Thanks @StayAtHomeMom, I haven’t tried kefir - that might be good. I also feel better on a low carb diet. I also cut out tomatoes because they just agitate my upper GI sooooo much. All my GI screenings were negative so hopefully there’s nothing going on there other than the GERD. I hope I find a balance too! 

[StayAtHomeMom]

My symptoms point to GERD but I refused the diagnosis til they proved it by doing the scope. Turns out I didn't have it and I was taking unnecessary medicine. I think it has to do with the autonomic dysfunction side of things that just makes it go haywire. So I just try to treat the symptoms and avoid triggers. After a while mine settled into a routine. Today my stomach is rumbling (I haven't eaten) but I feel full. I am just letting it be and as long as I am not nauseous too bad it will get over it. I will eat a little supper (acidic helps nausea for some reason) and tomorrow it will feel better. Sometimes the weirdest things help so don't give up.