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Faustus

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  1. I've been through three Cardiologists -- two who missed my POTS entirely and the third who finally made the diagnosis. Worn two 7-day holter monitors, had one echocardiogram, and had blood tests. Monitor showed I had sinus tachy/brady, and some PVCs/PACs, but that has since been chalked up to the POTS. Echo was beautiful. At the time my CRP was slightly elevated (8), but we also know I have had chronic costocondritis since November of 2017 for reasons unknown, so that very well could cause the elevation in the inflammatory markers. NSAIDs have done nothing to relieve that, so everyone is a bit at their wits end on me. I do take a beta blocker once daily (because twice drops my resting HR to the low 40s and it becomes dangerously low come sleep -- it also gives me major sinus bradycardia episodes) in the form of Acebutlol, and my former GP has me on Simvastatin as a precaution because taking my gallbladder out + sudden massive weight loss raised my lipids levels a bit (not to a dangerous point, but she wanted to lower them back where they were). So that is also taken once daily. We're talking with my Cardiologist about switching me to Propanolol since it is more extended release than Acebutolol. I've pushed for IV therapy because it helps me so much in the hospital, but none of the Cardiologists I have dealt with understand it or have ever referred out a patient for it, so they keep refusing me right now. Nice to know I'm not totally crazy about this pressure and pain issue, though.
  2. Hello, everyone! New member, still getting used to her POTS diagnosis from July. I’m learning the in’s and outs of this complex little problem, while having others tossed on top of me. My main question of this evening is: Do you regularly get excruciating chest pains (usually a dull/ache sensation) or have the sensation of something heavy on your chest? This has sent me into a panic on more than one occasion, taking me to the hospital thinking that I must be having a heart attack: after all, that’s all that fits, right? Especially when you have back, jaw, or left arm pain? And nausea? It just sounds like one. But never in all of my trips has it been. (Mind you — since I began having those trips, I also received diagnoses of Fibromyalgia and EDS of an unspecified type until my genetics testing appointment in June, so that adds to the pain.) But then there are nights like tonight where my chest pressure is absolutely debilitating. I can’t lie on my back without feeling like I’m being crushed, and sitting up causes the pain. So I’m wondering: anyone else get these feelings, or just me? And if you do get them, what helps relieve your symptoms? (As another baseline of reference: I currently drink around 128oz water daily, add salt where I can, am on Acebutolol 200mg as a beta blocker [that has stopped working], and am still struggling hard.)
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