Er Doctor Frustration

[Topsail]

I went to the ER this morning because for a week I've been having pain in my back and just below my rib-cage making it impossible to sleep. When the ER doctor came in I told him it probably was stress or POTS related. His response back was that POTS has to do with blood pressure and then he printed a POTS article off for me. I understand that the hallmark symptom of POTS does have to do with heart rate and blood pressure but that isn't the only symptoms as there are many. Last year I went to a different ER and asked the doctor if he knew what POTS was, he answered yes so I asked him "what is it?" I don't expect the doctors to know however I do expect them to look it up if they do not know. Is that too much to ask? I ended up leaving the ER that day simply because the doctor couldn't answer my question after telling me he knew what it was. Anyhow after the test were done today I was told I have a gallstone, I agree that is probably the case. My question to the form would it be better to tell ER doctors that you have a Dysfunctional Autonomic Nervous System rather than POTS?

Thanks,

Carol

[juliegee]

I think so. POTS is really just a symptom- that basically describe an oddity with HR- a sustained 28-30BPM increase from supine. If you want to summarize all of your symptoms, a dysfunction of your autonomic nervous system might be a better monicker.

That being said, ER docs are pretty notorious for writing most of us off as having anxiety. It'd be a rare one who'd actually take the time to look up or understand dysautonomia.

Sorry about the gallstone. I remember the pain from my gallbladder dying out- OUCH

[HopeSprings]

POTS is really just a symptom- that basically describe an oddity with HR- a sustained 28-30BPM increase from supine. If you want to summarize all of your symptoms, a dysfunction of your autonomic nervous system might be a better monicker.

Yes, so true! It took me years to figure this out. It only recenty hit me... If I say POTS, Dr's are like huh? If I say autonomic nervous system disorder, they get it! "POTS" really needs a new name.

[janiedelite]

I agree. I tend to say that I have autonomic nervous system problems/disorder which affects my BP, HR, digestion, and more.

[brethor9]

yep me too! I have given up saying POTS....now I just tell everyone I have an autonomic nervous system illness....they actually seem to take that alot more seriously....if they ask for further elaboration I explain my ANS is not regulating properly and therefore the systems it controls are malfunctioning which causes me to be very ill I seem to be getting more respect with this description

Bren

[Topsail]

Thanks for the input...I'm going to try it.

Carol

[anaphylaxing]

I've learned that you kind of need to think about what you need from the ER before going in and stick to that. EG abdominal pain--need them to exclude gallstones, kidney stones, aortic aneurysm etc. So focus on the pain and what brought you there. If they ask about your other history then casually mention dysautonomia allergies etc...but to be fair to the ER docs (not that it's necessarily right) they need to be most on the ball with acutely life threatening stuff which THANKFULLY usually isn't POTS.

If you say too much about obscure things or seem too emotional many docs will just write you off as anxiety. Not that it's right. Hopefully someday with increased awareness things will change.

[Clairefmartin]

I agree - if you go in for something POTS related, use the term POTS, but if its anything not specific to "POTS typical" issues (dehydration, hypovolemia, BP issues, etc...) than use the dysautonomia terms. I went to the ER for fluids today and was pleasantly surprised, my BP had been acting really weird (90 point difference between s/d), my home PT and Cardiologist's nurse told me to go, and I told the ER what was going on, and that usually IV fluids are a quick fix for everything for me, and they said "no problem" and hooked me up. It probably helped that my arms looked so devoid of veins that they thought i was dehydrated. I had right sided weakness/tingling in my face today, which has happened before, but not this pronounced, and I was so brain foggy I couldn't speak as well as I usually do, so after ruling out a stroke they let me run the show. The doc even offered me another bag of fluids if I wanted them, and felt I needed them (which I declined). My BP stabilized and I felt better as always. It was the best ER experience I've had.

Anyways, just wanted to share. I find that the more confident and educated you sound, the more most doc's respond. I always tell them I have a biology background and read the JOURNAL articles, not google. I have a few saved on my phone, I have even offered to share with them in the past in a non-condescending way. That seems to help too. Hope you have better luck next time!