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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Hyper Pots or Tumor or ?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Hyper Pots or Tumor or ? › Reply To: Hyper Pots or Tumor or ?

November 13, 2012 at 11:01 am #3123
Joann
Participant

Thank for the response. I know you can understand this when I say, I so wanted it to be a pheo. It has been the worse year. If it was cancer, a tumor or something that people understand, I would know what to do and get some support from doctors and family and friends. I can’t understand how they can say this won’t kill you. In May, my blood pressure kept going up when I even lifted my head off the ground. I was in hypertensive crisis, although the hospital would tell me I was fine, because once I was lying down it would get lower. So they would discharge me, and I would have to stand up to leave and it would start all over. I am currently on carduera and metorprol. They seem to help some with the bp and heart rate, most of the times. But I am so limited on what I can do and it does seem to also be on a monthly schedule also! I live in a bungalow and cannot go in a large portion of the house because of the stairs. Sometimes as soon as I go up stairs (which I haven’t in a while) I will get the pressure in chest, the pain/throbbing in left side of face, neck, arm even side. But sometimes I will be able to do stairs and bp and heart rate aren’t too bad, but later, I know this sounds weird, but the next day I will have the beginning of days where everything sets it off. Is this possible could the stairs cause symptoms way later? It seems like it and I am totally afraid to do them. I do not pass out, or get light headed like some many of POTS patient talk about. I still worry this is angina or something they are missing. I have found a doctor who is in electrophysiology and cardiovascular medicine and she said the tilt test confirms POTs. But she seems to only be concerned with BP and heart rate. Thinks I need to see someone else for other sympotoms. Do you have any suggestions as to who to see. I have seen a endorcrinologoist, neurologist, primary, cardio (several!), very disappionted with gastrologist. Where can I go to discuss POTS as a whole. I know I am better than I was back in May, thanks to the one cardio. who thought it was a possible pheo. BUT I am not well, I am afraid to the present and future. So whiny but I was in the BEST shape prior to this and did everything to and for my daughter, and now I can barely do anything with her. Plus, people think I am faking this! I don’t think my husband even believes a lot of this. Sorry but any suggestions would be so helpful. I live in MI and I tried the big university hospital, the hypertension expert there did no testing, said you have a mild case of pots and I don’t need to see you unless needed. When I asked what I was suppose to do, exercise, fruits and vegetables, and take bp meds. Thats it!

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