Doctors: POTS is not a thing

I’m pondering this week why it is that doctors mostly seem to disregard POTS and any symptoms of POTS. Why is this such a battle?

My PCP sent me to the ER a few months ago because I had more bizarre symptoms than usual: worse chest pain, increased dizziness/confusion, and sudden all-over pain except for my hands and feet, which were numb and occasionally blue. That visit was harrowing even at the time. The doctor was, simply, a bitch. She didn’t let me finish a single sentence and when I couldn’t produce a photo of my blue hands she rolled her eyes and just walked out of the room. Nobody asked for a health history or med list. Not surprisingly, nothing helpful happened and I went back home feeling exactly the way I did when I went there.

Well, it’s not the first or even 10th time something similar has happened, so I was pissed off about it but resigned. UNTIL. I started getting bills my insurance would not pay because the ER said I went there for a non emergency. In what universe are those symptoms a non emergency? I have bizarre symptoms on a daily basis and would not bother wasting my time unless I was seriously concerned. Even just common sense would dictate an EKG and orthostatic vital signs at a minimum for those symptoms. But on top of that I spent years as an ER nurse and can state with some assurance that those symptoms would warrant cardiac enzymes and at least the suggestion of a neuro workup of some kind. Confusion and numb limbs are kind of scary.

I found out not too long after that that I had serotonin toxicity, if not serotonin syndrome, and that is a Bad Thing that really can kill you.

This situation has pissed off my PCP and she is writing a letter to my insurance company, so we’ll see what happens there. At least I have SOME doctors in my corner!

But why do so many of them roll their eyes and get so hostile? I have theories. The main one is that particularly in an emergency room, if they can’t easily identify a possible cause of symptoms that they can’t see, it’s too much of a hassle and much easier to decide you’re just nuts. That’s pretty obvious. And if you actually HAVE a history of anxiety, you’re doubly screwed.

And what do they do when you go to an ER? They put you in a bed. If you have POTS, being put to bed solves the problem temporarily. The longer you lie there, the better your vital signs look. To your average doctor, a good-looking monitor means the patient is fine. What I can’t explain is why, when they’re told you have passed out or have an ORTHOSTATIC issue, they don’t even check this out. Orthostatic vital signs should be the standard of care with these complaints, but failing that this is a very easy thing to verify: just let me stand up and then watch what happens to my vital signs. My own doctor even told me “the next time this happens make them watch while you stand up and let your vital signs get all crazy.” It’s too bad this is her best idea and that I have to do this, but it probably is the only way to “prove” that I’m not nuts.

The problem with that, at least with this one visit as an example, is that I felt too sick and confused to advocate for myself. Strategic error: TAKE SOMEONE WITH YOU TO THE ER. I’m used to functioning while I feel like death warmed over and forcing myself to act like I feel fine so I do that automatically, but that isn’t a good way to convey that I actually feel like I am dying.

Which leads me to another possible problem. Doctors are trained to consider patients’ REACTIONS to their complaints. Like, it would be noteworthy if someone came in with their leg off and seemed unaffected by it. People who complain of 10/10 pain while they’re texting and eating fast food are probably full of shit. That is a reasonable thing to consider, obviously. But if you live every day with pretty miserable symptoms you can’t go around acting shocked and appalled by how bad you feel. You learn to normalize it and not appear miserably ill. You get so used to your fairly alarming symptoms that you do calmly discuss them. That may look clinically odd. In fact I’m sure it does.

But I don’t see a good solution. Am I supposed to work myself into an emotional frenzy just to get a doctor to believe me? That seems histrionic. And if I do make myself look really anxious, won’t I run the risk of contributing to the conception that I’m just an anxious mess?

I don’t know how to solve any of this. Until doctors start actually listening to me and believing what I say, I predict having to just fight with them all the time. It’s very concerning and exhausting.

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