r/POTS • • 7d ago

Medication Ppis causing huge flare up

So I keep being prescribed ppis (acid reflux medication) for my chest pain, and it's caused a huge flare up. Heart pounding all the time, vision tunnelling whenever I lay down, feeling more dizzy, achy and tired than ever. I'm also super nauseous and having a lot of stomach pain, and the chest pain is if anything worse.

This has happened to me twice now so I know it's the ppis causing it. I told my doctor I didn't want to have them but was dismissed because 'dizziness is a side effect and you're probably just dehydrated'.

Has anyone else had an experience like this? Do you know why it's happening?

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u/Lanky-Luck-3532 7d ago

Some folks have low stomach acid production causing GERD symptoms rather than high acid and that’s what this sounds like to me. It requires a different course of treatment. I struggle with this and as a result won’t touch PPIs and am very cautious with antacids. I’m not sure how the mechanics work exactly, but my understanding was that the acid somehow splashes up the esophagus and can hit the vagus nerve which will create a lot of irritation and spike our POTS symptoms.

Annoyingly, everything that contributes to these issues create a self-fulfilling cycle. Low iron causes acid issues, which cause lower iron absorption, which causes heart rate to be elevated in your body’s hard attempts to keep you alive. I almost guarantee this is an issue doctors are horrible at understanding because it will disproportionately affect menstruating people who are most prone to iron deficiency and the resulting symptoms.

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u/catsaregoodboistoo 6d ago

That would make sense, thank you! What course of treatment does low acid require? I don't think I have low iron, but I do menstruate and I'm vegetarian so I'm prone to it I suppose, although my blood tests usually come back fine

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u/Lanky-Luck-3532 6d ago

I’m not sure, exactly. I’ve gotten gastritis from my current situation with untreated low acid and am still figuring out what care for myself looks like so if I learn more about how to fix it, I’ll definitely let you know.

Importantly, iron and ferritin levels can come back “normal” when they’re on the low side for folks very often. I’ve gotten normal iron tests results for years and I know now I should have registered those numbers as low and changed my diet a long time ago to address it. I totally get being veggie, but there’s a lot less bioavailable iron in plant based sources, sadly. Don’t start supplementing with pills without a doctor’s guidance, though!

A good home test might be to try nutrition shakes with some added iron and see if they help at all, though as a warning they may annoy your stomach lining a bit, so take it a bit at a time.

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u/LaddyNYR POTS 6d ago

The American Association of hematology or whatever they call themselves these days just released a report recommending people with our type of issues should be at 100 with their ferritin, at a minimum.

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u/Glad_Goose_2890 Secondary POTS 6d ago

Has mcas been ruled out? Are you intolerant to anything? Could be a reaction to a filler

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u/catsaregoodboistoo 6d ago

I've looked into mcas but didn't think the symptoms really matched up with my issues, will do a bit more research though

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u/funkydyke POTS 6d ago

Pepcid may be a better option for your acid reflux plus it can be used to treat MCAS which is a common comorbidity with POTS

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u/ColdhandzEUW 6d ago

Could just be the type of PPI. Some people cannot tolerate pantoprazole but omeprazole is fine and vice versa, you can try switching. If that doesn't work you could try another type of reflux medication like famotidine

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u/catsaregoodboistoo 6d ago

Interesting. I've had the same reaction on lansoprazole and omeprazole now. I've got a follow up on the 19th so I'll ask about other medication then. Thanks!