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POTS with High and Low Blood Pressure?

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jessica81642
jessica81642

 I was originally diagnosed with hyper adrenergic POTS, with a tilt table test in which my blood pressure sky rocketed along with my pulse. Now, recently, I have been in a "flare up" for 4 months in which my blood pressure drops and my pulse rises. 100/37 and 227 HR from standing still for 5 minutes. I can't seem to control my body temperature, varying from hot to freezing. They have checked my stomach (colonoscopy and endoscopy due to digestive issues), multiple EKGs, MRI/MRA of my neck and brain-- the only things that have come to their attention would be that I am hyper mobile and have Chiari I. I'm scheduled to see a neurosurgeon next month, but my doctor doesn't know if that's even the cause of my fainting.

I am so tired all the time. My body constantly hurts, which they believe is from the hyper mobility. The vertigo is so much worse.

Does anyone have any insight? Does Chiari seem like it could be the culprit? I have never read of a POTS patient with high and low readings, so I am startled, to say the least.

0 likes, 4 replies

4 Replies

  • mattchu84
    mattchu84 jessica81642

    Posted

    you could be having a vegal response that could be affecting your blood pressure ect,id get it checked out as pots can cause problems with many parts and symptoms can swap and change , ask the doc for some meds to stabilise blood pressure if it makes you feel bad 😃

  • Potsy1990
    Potsy1990 jessica81642

    Posted

    i have this it just horrid i not on anything for it at moment i really hope u get sorted msg me if u want ive had it for six years am 28 going on100

  • snow802
    snow802 jessica81642

    Posted

    Hi Jessica,

    First, let me point you in the direction of a special issue of the journal, Autonomic Neuroscience. . The entire issue is about POTS! I've read through a lot of it (and a lot of other medical articles)--and understand a decent bit of it. I have read that Chiari malformations can be a possible cause of POTS. Also, if you are hypermobile, do you know if you've been checked for Ehlers-Danlos? Hypermobility is a hallmark of ED--and there seems to be overlap, or correlation, between those who have POTS and ED and chronic fatigue and MCAS (mast cell activation syndrome).

    I totally get your frustration. I've had POTS (well, I think I still have it, but it seems to be changing) for 20-25 years. I still don't know what type I have. Oh, also, the new research suggests that the POTS types may not be pure. In other words, you can have more than one type.

    As to the drop in blood pressure when standing up combined with a rise in hr, I have this! I don't think I used to though, but I don't really know. Docs aren't great at remembering to measure this stuff! But, I was off my beta-blocker to do some testing the other day. My blood pressure dropped from 116/80 (lying down) to 104/80 standing. My heart rate went from 66 to 130. So yeah, this happens to me too! I also get really cold sometimes. In any case, you didn't say if you were on any meds. Metoprolol has really helped me. Without it, I was exhausted all the time. On it, yeah, I can feel sluggish in the morning, but I can function.

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