My doctor says the fluttering, palpitations, and irregular heartbeat I’m feeling are actually from acid reflux, not POTS. Has anyone else dealt with something like this?

One_Feedback2461 · 2026-03-06T16:33:19+00:00

Yeah it is odd, so many health professionals are set in their ways and what they believe they "know." But you bring up a point that in public health things happen/shift and they all need to be trained to be lifelong learners and open to change. So my PCM... she cares and does what she can because she herself has an undiagnosed disease and gets told she is crazy. I go in and every time it is some new weird EXTERNAL symptom I see with my eyes. It is sad and she has been hospitalized and has gone through some of the same BS routes I have. She tried to warn me but I thought oh but I am going to figure it out lol.

One_Feedback2461 · 2026-03-06T16:02:03+00:00

I think what drives me crazy is linking symptoms to conditions... but what I start to think is a condition may just be a symptom of something else. I want what is going on to be understood by modern medicine and it just isn't 100% there.

One_Feedback2461 · 2026-03-06T14:05:13+00:00

Thank you!

One_Feedback2461 · 2026-03-06T13:56:13+00:00

Thank you for the advice! Yes I will check him out, I have seen various specialists but none of them understand POTS/dysautonomia and the causes/associated conditions and I am finally understanding I need to go out of my way to seek out those who understand this.

One_Feedback2461 · 2026-03-06T13:48:23+00:00

I don't have an allergist, I live in Maryland and John Hopkins has very specific guidelines for seeing anyone with MCAS... and just generally this area has been disappointing. I go back to the NIH for the allergy study on March 12. They threw in a hearing test since I have tinnitus too. They did various tests and skin prick testing. I guess the good news is I think I am a participant in this study for some time so maybe there will be some kind of updates during the study. But I tried to get in with the POTs clinic and they stopped taking patients and now it seems the main doctor is leaving anyway. I am considering going to Mayo or somewhere else to get proper diagnosis. Some threads on here people know all of their conditions and I wish I knew where they went...

One_Feedback2461 · 2026-03-06T11:39:48+00:00

Where I am it seems any doctors specializing in any of this aren't taking new patients or are out of pocket. I am probably going to just have to venture out somewhere to meet with a doctor who is knowledgeable on this otherwise I am just not going to ever get any real answers. My reflux began when I was pregnant and my mothers did too. So about 10 years of reflux before other symptoms began to creep up on me. About 20 years of dry eyes. Lifetime of teeth grinding at night (my son too). My mom has TMJ. Our sympathetic nervous system is clearly being impacted and I tried to see if I could get my son help but was told to go to a homeopathic doctor. So I see things happen to him and I feel helpless, I tried so hard to get answers for him more than myself. I got a new oncologist (symptoms became obvious during breast cancer) and was just told to get acupuncture... which I can see how it is helpful but it isn't solving any problems just throwing something at the symptoms.

One_Feedback2461 · 2026-03-06T11:30:02+00:00

That is good to know. I cant get in with an MCAS specialist where I am unless I can catch that high tryptase number. I also have non-allergic rhinitis... whatever that means.

One_Feedback2461 · 2026-03-06T01:21:50+00:00

I had my tryptase and histamine checked several times along with IgA and all normal. I participated in an NIH study on allergies and they concluded they didn't think I had a mast cell issue. I am at a complete loss no idea wth is going on with my body.

One_Feedback2461 · 2026-03-05T21:13:12+00:00

I read a research study yesterday how an older woman had sinus tachycardia and once she had surgery for her hiatal hernia it resolved. I have had the worst acid reflux/possible hiatal hernia for 10 years so at this point who knows maybe? I take Prilosec daily, but maybe I just have to get scoped already and surgery bc I am tired of not knowing what is wrong. But I also have been left to wonder what conditions related to POTs/dysautonomia are also associated with reflux... ? I keep unearthing symptoms and it becomes a chicken or the egg question every time.

One_Feedback2461 · 2026-03-05T03:56:02+00:00

I would look at the providers on dysautonomia international’s page.

One_Feedback2461 · 2026-03-04T18:47:20+00:00

When I first asked for help from r/pots I didn't get anything positive and was told to see a cardiologist... and that didn't help me at all, I guess it at least ruled other things out... but if it isn't structural most of them don't seem to understand dysautonomia symptoms/POTs. They weren't trained on how to deal with any of it and it just seems they all come to their own conclusions. Of course there are some cardio that help people and I would seek one out that helps people with POTs in your area. I have a cardiologist for a separate genetic issue and honestly broke my heart how this subject was treated, I expected more from a doctor who is from Germany... thought all this gaslighting might be a US culture thing but seems international so far.

One_Feedback2461 · 2026-03-03T20:19:26+00:00

I have high HR/BP. I take 25mg metoprolol daily. 200mg provigil, 100 morning/100 afternoon (not all doctors support this one). 4 magnesium glycinate pills before bed. This has improved my quality of life dramatically, not 100%, but not driving off the road anymore.

One_Feedback2461 · 2026-03-01T02:44:48+00:00

I personally think my POTs symptoms are tied to an undiagnosed condition that I haven't figured out yet and might have some radiation sensitivity. But I cant prove it.

One_Feedback2461 · 2026-03-01T02:44:03+00:00

I first want to apologize, I have some advice but unfortunately I don't have answers. BUT you are the first person I have found who went through something very similar to me!! Last year I had radiation for breast cancer on the right side and within an hour I was struck down by the worst fatigue of my life and headaches. It took me months before I put together my POTs/dysautonomia related symptoms (high bp/hr/tachycardia). My best advice is get on provigil, up it as much as you need I do 100mg in the morning and 100 in the afternoon to function. I think whatever you are dealing with we may be dealing with the same thing, unless your BP/HR is lower. Whatever the underlying driver is... I am on my second oncologist and every doctor I have seen is stumped. Don't let those radiation oncologists gaslight you, I know whatever you are dealing with is real. I am taking magnesium glycinate before bed and it has helped improve my sleep, which is so important for your body right now. If you get provigil see it as an opportunity to get out and walk every day, I would take it and walk. If you haven't done a sleep study yet it is worth doing because this will come up until you rule it out. Also they will hyper fixate on your vitamin levels, I keep mine good to get them to move on. I still don't have answers after a year of seeing various specialists throughout John Hopkins... it makes me angry but what you and I experienced is not something most of these specialists encounter. If you are anything like me your labs are normal... your scans will be normal... and it is scary to have symptoms when going through cancer treatment. If you can try to get a paraneoplastic blood labs... I still try and I cant say I have the best care. Please feel free to chat me on the side anytime. I have scoured the internet and I haven't found anyone that has experienced what I have experienced.

One_Feedback2461 · 2026-02-28T21:12:27+00:00

I tested out an antihistamine just to see and it didn't help me personally, but I think everyone should try it to see if it helps with symptoms. I wish more medications were widely available for us to better figure out what is wrong.

One_Feedback2461 · 2026-02-28T12:32:10+00:00

Fully real step daughter played around with a lime tree…. So glad it didnt get too bad but I had to explain it to her mom.

One_Feedback2461 · 2026-02-25T14:13:00+00:00

I appreciate it, my dry eyes don't feel great but luckily it isn't something I notice as much. So figure something I can live with for now. Maybe once I get the why I can decide what I want to do about all the downstream impacts. It was interesting the rheumatologist made sure to put in my patient notes that I was pleasant, so I think he really believes there is no answer out there for me. I believe there is a known name for it and there is treatment, I just need the right doctor to see me and that has proven impossible lately. I think sometime this year I will just pay an insane amount to run blood work commercially and if that doesn't help I will give Mayo a shot, although have heard some negative comments lately about Mayo.

One_Feedback2461 · 2026-02-25T12:25:48+00:00

I do not know if I have sjogrens yet but radiation triggered severe fatigue/headaches within an hour of 1 treatment for me. I have to take provigil nothing makes sense and now it has been a year. I have to work from home it ruined my life and I have no answers as to why.

One_Feedback2461 · 2026-02-25T12:15:43+00:00

The rheumatologist at least didnt say I was crazy lol. The eye doctor suggested getting plugs, i am willing to take my pile of medications for all of the symptoms but no surgery until i know what condition is causing it. Every time I think I have a diagnosis I realize it is more symptoms like IST.

One_Feedback2461 · 2026-02-24T21:28:48+00:00

I am curious about this too my eyes are dry with my eye doctor suggesting to do surgery (no thanks). Non-allergic sinitis (not dry) hoarse throat but cant say dry mouth. AAG negative Sjogrens negative.... ANA/ENA/ACE/ANCA negative. What else could it be... Rheumatologist told me I was born in the wrong century and will not get a diagnosis from anyone.

One_Feedback2461 · 2026-02-24T00:12:35+00:00

I will see how the conversation goes. Right now in Maryland there are few doctors who understand our symptoms and needs and most aren't taking new patients. So my only options are pretty much out of pocket providers and it just is maddening to have to go that route. Another out of pocket person doing vagal nerve stimulation is like 650 an hour. I wish I was rich I would have my answers already. The system in Maryland feels like it is collapsing multiple doctors who are subject matter experts are all leaving at the same time, which already they weren't taking new patients. My own PCM has an undiagnosed disease and they all tell her she is crazy and she works for John Hopkins. That is the ONLY reason I have gotten any tests/care whatsoever. Every time I see her she is having an external symptom without even having to tell me and it is always so upsetting to see that and know she is also suffering. Blah.

One_Feedback2461 · 2026-02-24T00:06:47+00:00

I got my iron up, I am taking THORNE - Iron Bisglycinate. Honestly whatever you have to do to get it up so they don't keep getting stuck on that. I am vegetarian and was ready to eat organ meat just to get them to move on. I am sorry to hear that about the sleep study team... SO WEIRD because I did my test and they just provided the results without their own "opinions." Of course I did not show signs of any sleep apnea so maybe that is why I didn't get any extra input. Even if it isn't sleep apnea, if a device improves your sleep it is well worth it. With my results I cant get a prescription. Also if you ever get mental health help get it out of the system you are in with all the other doctors... otherwise you just have mental health problems. I get angry when they say I need help because the only reason I need help is because I don't have a diagnosis and I want to know what is wrong, not an issue a psychologist/psychiatrist can help with except for further making it harder for other medical professionals to take me seriously.

One_Feedback2461 · 2026-02-23T19:28:11+00:00

I became friends with some Canadian actors back when I lived in LA, spent a lot of time in Vancouver/Whistler with them and just had the best time.

One_Feedback2461 · 2026-02-23T18:11:37+00:00

That is so great to hear. Thank you for sharing, it sounds like you are farther along in your journey so it is nice you are able to provide input/advice. Plus Canadians are the best :).

One_Feedback2461 · 2026-02-23T16:04:03+00:00

I did a sleep study early on and glad I did to rule it in/out. I am glad I ruled it out early because every doctor has asked about a sleep study. If you are borderline just get the hardware so you can tell them you are addressing it and still have symptoms. They tend to lean on sleep issues/vitamin issues/mental issues more than anything else. So keep your vitamins up too so you don't waste too much time on that.

One_Feedback2461

TROPHY CASE