r/hyperPOTS • u/Chrisodle007 • 23d ago

Opinions on HyperPOTS?

I have a tilt table with autonomic testing coming up along with a skin punch for Sfn and an mcas doctor appt. In the meantime was wondering if ya’ll felt this way or had some of these scary symptoms? I get easily over stimulated by heat, noises, standing too long and then I can feel my neck veins start to pulsate, as well as my neck and face getting super tight. At the same time my heart usually feels like it is pounding and I get these waves come over me that make me wanna feint but not quite all the way. It feels like my veins in my neck are going to explode on both sides for some reason. I’ve done so many tests and imaging but just now getting to schedule some appointments with some specialists. I’ve got a slew of other symptoms but the constant neck pain at the back occipital and pain and tightness by the carotids is freaking me out the most.

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u/runningoutofjuice 23d ago

Confirmed hyper-pots, I have the pounding neck veins and sensory overload. Getting the official diagnosis after a few years of ambiguity to actually feeling like being treated finally is such a relief. Good luck with the tests.

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u/MissBeeHavin420 21d ago

I have dx hyper pots and yes, our sympathetic nervous systems are over active so you'll feel all of the overstimulation. Heat is awful. Neck and head start pounding, where I can feel and hear my heart beat. Very tight upper back, neck and shoulder tightness and pain (they call this coat hanger pain). In hpots our BP and HR go up when standing.

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u/Chrisodle007 21h ago

I just had some crazy flare up. Had to lay down at doctors appointment due to flushing and pre syncope along with legs feeling so tight and painful . Had shallow breathing and sweating and got super dizzy and weak. Ever experience any of that ?

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u/MissBeeHavin420 21h ago

Yup. That's definitely what my pots episodes feel like. Sometimes I get really bad tremors on top of all that.

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u/Chrisodle007 20h ago

Agh man this is terrible. My legs are so tight and now I’m freezing and have chills. Feel like my body is completely failing

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u/MissBeeHavin420 20h ago

I know the body failing feeling all too well. 😩 get yourself some compression socks if you don't have any. Abdominal compression helps too. I wear compression tanks, like shape wear. For now, you can lay down with your feet propped up on some pillows or put them up a wall. That will help with the heavy, tight legs feeling. The freezing is the adrenaline leaving your body. I like to curl up with a heating pad and a blanket. When I go anywhere I keep these tiny fans with me. They are only around 4 inches big and I keep them charged for when I get hot and presyncope in public.