Confused Again By Cardiologist!

[TCP]

As some of you may already be aware that my cardiologist won't commit to saying that I have PoTS, but has told me to do tilt training and also take Ivabradine. She has informed my GP, as there is a restriction on supplying Ivabradine for certain conditions, but she told him it's for Inappropriate Sinus Tachycardia and PoTS. She has told me that I haven't got either of these. She also failed to write that I have syncope and pre-syncope and other pronounced signs of autonomic dysfunction.

Now reading a line in her letter she states, 'Postural tachycardia but no overtly POTS syndrome.' Can anyone tell me what the difference is?

[Psalm 23]

Postural tachycardia would be just an elevated heart rate upon assuming a standing position where as PoTS (syndrome) would also include complaints of symptoms of dizziness, nausea, shortness of breath etc.. Typical PoTS symptoms. Did you experience these symptoms in addition to tachycardia when your ttt was done ? The nurse usually asks how you are feeling during the procedure.

[TCP]

Hi. Yes, I had all the symptoms, of pooling in my legs (and buckling of legs as test progressed), making the neuropathy worse, dizziness, nausea, weakness and sweating. This was all noted by doctor and nurse attending and was mentioned in the test report. My symptoms seemed to have been ignored though in this case and even my mentioning syncope and pre-syncope to the cardiologist has been ignored. Not good, is it?

[Katybug]

I feel for you, TCP. I wish I had words of wisdom but I'm in the US and am unfamiliar with how to navigate your health system. But I'm rooting for you!

[statesof]

I think it is hard sometimes for doctors to give a concrete diagnosis because especially for POTS. I have felt from my own experience that some doctors rely soley on the tilt table test numbers. For examply my TTT always shows the 35+ heart rate increase, and I feel lightheaded and get the blood pooling in my legs, however my hr and bp stabalize relatively quickly, so I've had some neurologists tell me I only have a minor form of POTS, because they have had other patients who really crash on the tilt table test. And then I've had other POTS literate doctors who take a whole history on my symptoms and see me as a patient who has quite severe autonomic dysfunction. I think its quite possible to have POTS/ dysautonomia, with the orthostatic hypotension not being the most sever symptom.

[Psalm 23]

I'm sorry TCP. Your situation sounds very frustrating. It's so awful when you feel as if your symptoms are ignored. I can't imagine why they would question a PoTS diagnosis if you meet the ttt criteria and complain of pertinent symptoms. I would question my Cardiologist about how it was she came to the conclusion that she did in terms of her diagnosis and have her explain what Postural tachycardia but no overtly PoTS syndrome means exactly. There seems to be a communication break down here. This doctor needs to explain her position. Like Katie I am unfamiliar with navigating your health care system but here in the states many would seek another opinion if a conflict arises.