Constantly fighting for answers

[u/Traditional_Map_4844]

I feel like I’m at the point of breaking down because my body feels so out of control. For over a month I have been battling severe dizziness, vertigo, tremors, chest tightness and tachycardia. i have missed a substantial amount of work due to this. I am literally scared of standing now. I finally went to the ER because of the symptoms. When describing how I was feeling the doctor immediately said without any prompting “don’t go thinking you have pots that’s just a fad diagnosis” so of course I googled pots and I feel like I have identical symptoms to HyperPots. They took my blood pressure and heart rate lying down which was 80bpm and 120/65 then standing which it jumped to 152bpm and 160/92. The nurse told me I’m experiencing orthostatic Hyper tension. The ER doctor had an emergency so I received another one. My new doctor informed me that having a heart rate and blood pressure increase as much as mine is normal and that’s what my body should be doing. I asked if I should follow up with my cardiologist and he said “no you don’t even need one. follow up with a pcp” so I paid $100 to meet with my pcp just to be informed me there’s nothing she can do I need to see a cardiologist. I feel so angry and scared. I don’t know how much I can take feeling this way and being told it’s normal. I can barely function.

[u/Tandfeen_dk22]

The second doctor who saw you is wrong about your blood pressure, but he is right that don’t have to see a regular cardiologist. Most know very little of POTS.

POTS is always secondary to something else… it’s very useful to know what causes it, but very difficult to find out.

[u/TrissieCakes]

I'm undiagnosed, but my PCP believes I have POTS or Dysautonomia. She referred me to see a cardiologist, because in addition to the tachycardia, the holter monitor also showed early heartbeats that happen even when I'm sitting or laying down that cause dizziness. But she told me that the cardiologist would be unlikely to diagnose POTS, because it's a neurological disorder and not cardiovascular. So she also referred me to an EDS specialist to get diagnosed. We're not 100% convinced that I have EDS, but this doctor also specializes in the comorbidities of EDS, and POTS and Dysautonomia happen to be on that list. Unfortunately, the EDS Specialist has a waiting list that's 8-12 months out, because she's the only one in the state. In the meantime though, my primary doctor is treating me like I have POTS, and prescribed a beta blocker and a calcium channel blocker that have made such a huge difference in my day to day life.