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Anyone Else Have A Mixed (Or More Than One) Type Of Pots?


peregrine
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So my reaction to the TTT (as described elsewhere here) was weird - my doctor basically described it as "starting off with hyperadrenergic POTS and then adding some pooling on top of that." Roughly - I went from 80 bpm to 120 bpm in the first 30 seconds of the tilt (after which point it fluctuated like crazy), which she said looks like hyperPOTS, but then I started to visibly pool (and I felt it too) and got worse over the next 7.5 minutes before they tilted me back to lying flat before I was apparently about to pass out. Apparently the QSART results and my description of some GI tract issues are making her think small fiber neuropathy as well, which she said could be causing the pooling (I think?).

I'm a little confused - it seems like most folks here talk about either being hyperPOTS or having pooling (or having other types), but not about having more than one etiology. Has anyone else been told this? If so, did treating one avenue of failure (sympathetic NS or pooling) help at all, or help only halfway, or what? Sooo confused.

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Yes. I've been diagnosed with both a neuropathic and hyperadrenergic type of POTS. Or perhaps it's POTS with both neuropathic and hyperadrenergic components. According to my neuro at Mayo, it's hard to treat this type cause what you do to treat the one type can aggrevate the other type.

His explanation of how you can have both is that (paraphrasing here) the nerves send out a signal to the body and because of the neuropathic (neuropathy) component, the body part doesn't react normally so the brain doesn't get the right signal response back so then it sends out even more signals which cause the hyper type response.

So far he's been right about it being challenging to treat. ;)

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His explanation of how you can have both is that (paraphrasing here) the nerves send out a signal to the body and because of the neuropathic (neuropathy) component, the body part doesn't react normally so the brain doesn't get the right signal response back so then it sends out even more signals which cause the hyper type response.

Good explanation! I think this fits me too.

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Chaos - thanks, that makes sense. Not that I like the outlook part, but hey - that's life! Thanks so much for the explanation.

Rama - gotta love it! I agree it's hard to say. Personally - if you go with a mechanistic approach - I would argue that hyperPOTS and poolingPOTS (including low blood volume POTS) (from what I've read) are different. But the role that neuropathy plays in both, or low flow versus high flow, or which are autoimmune, or which can be induced by illness or trauma, or which is common in kids who can grow out of it... eh. It's hard to say!

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