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Akgirl

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  1. Hello, I was diagnosed with pots a couple of weeks ago after a TTT. my Hr. went up 40 in the course of 30 min. I had also been fainting, and a few of the times I would go into convulsions and when I would wake up,I would realize that I had lost control of my bladder :( I have been reading a lot about pots and I guess I am not sure if I have another syndrome as well. I have no or very little internal body fat encasing my organs. (any one else have this)? So I have had to have surgery to hold my kidneys where they belong. Also when I pass out it is 95% of the time when I go from sitting to standing and yawn and stretch with my head tipped back. Is this normal?? I am now on beta blocker and steroid and those gnarly brown stockings. This has stopped the fainting altogether!! But I am still just so so tired and always have a pounding tension headache. also if I stand in one place longer than 10 min. My feet literally turn purple. I am always cold and can rarely feel my toes because they are so dang cold. The neurologist said that bad blood circulation is not related to pots???? I am starting water physical therapy and I am hoping that will get me back on my feet soon!! I also have swollen lymphnodes in my neck a lot. I want my my life back so if any one has suggestions or thoughts, that would be awesome!!

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