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Acid Reflux & Pots

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Hi Everyone,

I recently found some medical studies that suggest reflux can trigger POTS attacks. Naturally I can't find the info for the life of me and wanted to know if any of you incredibly intelligent people have run across similar info or have experienced it themselves? I'm supposed to meet with a new neurologist on Friday, though now that looks pretty grim as he more or less phoned me and told me not to bother coming, and I wanted to be prepared with some data.

I was dx with POTS in July and spent the next four months convinced I had a mast cell problem due to what I thought was idiopathic anaphylaxis (had a real problem finding food that was "safe" and lost *a lot* of weight). I only recently, as in last week, have been told that I'm in the clear from MCAD (thank goodness). What I had experienced was reflux, unbeknownst to me, triggering really severe POTS attacks that would shoot my BP to 200/100 every single time. Of course when experiencing it it feels exactly like anaphylaxis. Now that I know that I'm not actually going to die when I'm hit with these attacks I'd like to try to figure out how to control the POTS aspect of this.

I've been put on Prilosec 2x a day which has helped quite a bit. I take Florinef daily (.1) and of course keep my hydration and salt intake up. Interestingly, and maybe someone else had similar results, when I had my TTT in July I didn't have the typical "drop" in BP. My heart rate jumped 34 BPM however my BP sort of fluctuated high then low, high then low. During the attacks I mentioned earlier it hasn't gone much over 200/100 however it takes forever to come back down and drop to what I consider quite a low number for myself. And usually I experience uncontrollable shaking along with it which scares the bejesus out of me. I'm assuming, since I go ice cold in my extremities, it has something to do with all my blood collecting in my stomach? Any info on that would also be amazing.

I know that not every POTS patients has the typical drop in BP and since mine jumps this high in bad attacks should I be looking into hyperadrenergic POTS? I don't totally have my mind wrapped around the differences between POTS and H-POTS so if I'm totally wrong please tell me so. I know treatment is totally different for the two so I'd like to make sure I'm not making things worse with the Florinef. Otherwise if any of you have info (or commiseration) on reflux and POTS, triggering etc, I would greatly appreciate it. :D And even better if anyone knows of a doctor worth seeing in WI (I'm in MKE) or the Chicago area, I'd be even more appreciative! It amazes me how difficult it is to find a decent, knowledgeable doctor. And sadly I could not get in to see either Dr. Jaradeh or Dr. Barboi at Froedtert Hospital (the two recs I've come across for my area) because I'm not "sick" enough--they passed me off to a colleague in the office who as I said called me and said don't bother coming in. How sweet. Sorry for the bitterness, I'm just a tad bit frustrated.

Thanks in advance for taking the time to read through all of that and for your help!

-Kiley :)

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hi Kiley,

I do notice a strong correlation between what's happening with my stomach and bad feelings or POTS episodes.

At first I would think oh my heart isn't functioning properly when the gas would start to come but I think it's the opposite. I think my heart is basically fine and the horrible gas and or reflux triggers some bad feelings maybe even triggers the vagus nerve and gives me the creepy feelings I get.

You seem to have a pretty good understanding of what is going on.

I had mentioned something briefly to my cardiologist about the fact that I thought heartburn was sometimes triggering what felt like arrhythmia to me.

And he said in some people their hearts are triggered by whatever their stomach is doing (not that it is concerning) but he said control the stomach issues and you control the heart issues.

So when I notice the passing of gas stuff along with what feels like an episode I think I was really mistaken and it was the upset tummy making me feel off.

I notice for one thing if I can get rid of all my gas which I seem to have tons it really helps.

I wish I could be of more help but I have also gotten that same suspicion.

Oh I did the weird anaphylactic type stuff too we have that in common.

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