jayut

A lot of good questions. "why did you stop the propanolol?" I was only on it a week and then started declining fast. I assumed propanolol may be causing my decline. " in my case IV fluids" I wish I could get my doc to give me an Rx at an infusion center. I have been going to ER when I am in desperation, but it is expensive and not a relaxed environment. "How were you diagnosed? Did you have a TTT? Often this can point towards the type of POTS you have by monitoring your Bp ( drop or elevation when upright )." Yes, TTT diagnosis at Austin Neuromuscular Center, but treated at another clinic. I was not given a type of POTS from the doctor. My BP was very stable during the test. It isn't until this current crash that my BP started going much higher than usual. Up to 145/95. I have never seen my BP this high. When checking myself I have always had lowish BP. "Also - have you been diagnosed with EDS? " I have not been diagnosed or tested for this condition. How is this tested? "Have they checked your neurotransmitters? " No. I have been asking for this, but doc doesn't seem interested. Does the test have a proper name? My current doc seems to want to do trial and error with meds to see what sticks. This isn't working, because I seem so sensitive to things and when we are wrong I always seem to have the worst possible side effects. I can very easily travel to Houston and stay with my parents. Is there anyone that can recommend a doc or clinic in Houston?

Hello, I am new to the forum. I was diagnosed with POTS on Nov 1, 2017 after 3.5 years of searching for answers. Since being diagnosed, I have adopted most of the common lifestyle changes and I take 0.1 mg florinef. I have seen some benefits, but was still fighting to make more progress. One month ago, a combination of events has sent me into a tailspin. The events were (1) trying to taper off zoloft too quickly, (2) tested Propranolol 5 mg BID, and (3) overextended myself while trying to keep up with my family during spring break vacation. I since have reinstated Zoloft about 4 weeks ago, stopped taking the propranolol, and spending a lot of time bed bound. However, recovery doesn't seem to be happening. Can this wonderful community help me with the following? What are some strategies people have used to to stop a crash and get back to a more functional state? Is there anyone on this board that can recommend dysautonomia POTS doctor in the Austin, Texas or Houston, Texas area? My current doctor seems very focused on managing the illness symptoms which seems to be par for this illness; however, I am very interested in digging much, much, much deeper with some testing to try and find root-cause. Are there any resources that I could read that could provide direction and testing recommendations for attempting to find root-cause? Other comments that may help. I completed Mayo Dysautonomia panel. VGCC antibodies were slightly positive; therefore, we tried a round of IVIG in Oct 2018. I got aseptic meningitis so that was put on hold 5 months ago. We are going to re-run that panel again once I can get to the hospital for a blood draw. I have tested Pyridostigmine, but it didn't seem to have any affect in a positive or negative way. Usually, I have an elevated HR and slightly lower BP when I become symptomatic, i.e. 110/70 on florinef and 80/50 prior to florinef. However, in this crash I seem to have elevated HR, but very random BP ranging from 110/70 to 145/95. Having an elevated BP is completely new to me and I don't know what think or how to react to this ever changing and random BP situation.