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  1. I have eds and pots. I do not know what type as my husband is in the army, and the medical center and my doctors say they can't do genetic or research testing. I do not know if i have pots because of my eds or it is just a coincidence. My pots came on after I had a hysterectomy after my last pregnancy 5 years ago. After the delivery my heart rate was fine for 6 weeks, then I had to have a hysterectomy due to uterine prolapse, and from that point on I had a fast heart rate upon standing. I have had the typical eds and pots symptoms. But starting a year or so ago my heart rate won't go back down to a normal rate when sitting or laying. My heart rate is 100+ while I am sleeping and is typically 120-150s sitting and will be 140-200+ upon standing. I have had headaches for years as well. I have always been cold in my hands, feet, nose, bottom. And I never really sweated. Well starting about a year ago when my heart rate would be high while sleeping I started sweating and in the last few, months it has gotten really bad. I have hot flashes, excessive sweating only upper body, my hands and feet still stay cold. Well I started have chest pains more often, and nothing seems to help or make it worse, it just happens. Well in the last month my blood pressure is now high consistently. I am skinny and don't have any other health problems. I don't drink alcohol or caffeine and I do not smoke. I know standing norepinephrine levels can be high with pots, but my sitting norepinephrine levels are high, normal is 100-700, mine was 1107. The family doctor is thinking a pheochromocytoma, but I have had a CT of my adrenal hands came back clear, I have had an mibg scan, came back clear as well. My endocrinologist, sayds I have all the symptoms of an extra adrenal pheochromocytoma, but doesn't think I have it as it is rare. He is doing new blood work to seei and possibly 24 hr urine to check my norepinephrine levels again. If it isn't a pheo, my doctors have no idea what it is. I am not taking meds, as i had to stop for my mibg scan. I know with a pheo people typically have "episodes" where their heart races, sweats, headache and that is when the norepinephrine is being released excessively. My situation is that my heart is always racing. Yes i do have episodes where it is worse, but i never have a normal heart rate anymore. My question is has anyone had this or knows what it might be?
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