Struggling to get a POTS diagnosis

I was tested for it when I was sent to a now retired CFS/ME specialist. I was five out of ten. I had to learn to sit down. I find walking easier than standing. In looking back it confirmed I was the only one becoming upset in long cues and why I was. I need massages regularly and different medicines work. I need to watch how much coffee I drink, and the worst thing for me during lock down was experiencing heart attack like symptoms. I intend to buy more coconut water for electrolytes and I enjoy adding salt liberally to my food

You can also ask them to do a “poor man’s tilt table”, which involves you laying down, checking bp and hr, and doing the same standing. While this is not as definitive as the autonomic testing I mentioned, it can give them an idea of if you have pots. If this test is positive, they are more likely to order the autonomic tests

There’s a series of tests that they can do to definitively diagnose or rule out pots/Dysautonomia. A tilt table, sweat test, and breath test. I had mine done by a neurologist, some cardiologists also perform these tests.

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Definitely check and record your hr whenever possible. I have a Fitbit that keeps track of it and documents throughout day and night. Keep a record. Another thing, check and see whether you have family history of dizziness, fainting, etc. Having something you can refer back to will give them incentive to not brush it off. Hell, my doctor said over and over that my hr was just anxiety even with family history until she actually saw it for herself. Advocating is hard, and dealing with a chronic illness at the same time is the worst. Make your doctors tell you and document the exact reason why you don't "need" more tests. Make them think, even if it bruises their fragile ego to admit they were wrong. You can do this

This!!! I'm going through the same thing. 'Oh your just overweight', 'just drink more water', 'well your blood pressure is perfect right now'. My iron, great, water intake, on the poor side but I get enough. You just gotta be straight up. Don't ask. Asking leaves the answer to be no. Asking language like could you refer me to, do you think you, what do you think about- none of that. "I would like a tilt table test." If they ask why "I believe I have pots" If they say something like they don't believe you do just pull out that "I'd rather be safe then sorry, please refer me to cardiologist" Advocating for yourself and not letting that person wave their degree above your head is a big step. Sometimes you gotta be a little sturn. It's YOUR health. Not theirs, and if you think you need testing, go advocate for it and get it! I wish you the best of luck

Tell your doctor you want to be tested for pots and if he won't do it ask to see a cardiologist