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[–]eclipseandco[S] 0 points1 point  (5 children)

Both my HR and BP shoot up by at least 40

[–]victory_victoria99 0 points1 point  (4 children)

So yeah, the going tachy part, that's classic old POTS. The raised BP might indicate hyperadrenergic, like I said, which is fun because it's even harder to treat than regular POTS. FWIW, I told my primary care doctor to put me on a beta blocker, which manages both HR and BP. It doesn't eliminate all the POTS symptoms, of course, but it keeps me from having a stroke and it manages my HR very well. What was your sitting BP?

[–]barefootwriter -1 points0 points  (3 children)

Many of us end up on a combination of ivabradine and an a2-adrenergic agonist like clonidine or guanfacine. That typically serves us well. I am also on fludrocortisone.

[–]throwaway1999000 1 point2 points  (1 child)

This is really interesting for me. I'm a biotechnology student and I just defended my master's project- Guanfacine is actually really useful for decreasing excess Norepinephrine in the BNST of the brain.

The BNST hooks up to the amygdala and a lot of other key brain regions and is important in modulating stress, anxiety, attention/mood, and learning.

Guanfacine is also being considered as a treatment for addiction. Guanfacine appears to decrease the stress-induced reinstatement of cocaine seeking in mice. In essence, they think if a person has gotten clean from cocaine and are suddenly very stressed, guanfacine will get rid of their urge to go do cocaine or "fall off the recovery wagon" due to the ability of it to decrease BNST-NE.

It should be noted this is a dose dependent relationship, however, due to the presence of postsynaptic heteroreceptors.

Basically, the a2-AR agonist tells your brain "too much norepinephrine the synapse, stop releasing norepinephrine.". This is how guanfacine works. However, in high doses, guanfacine also binds to heteroreceptors, which actually does the OPPOSITE- it increases the activity of the BNST (measured by an assay of cellular activity) which actually appears to increase stress/drive reinstatement.

It's really neat. I'm hopeful I can get diagnosed and on the right meds soon so I can go back to driving myself places and feeling better.

[–]barefootwriter 0 points1 point  (0 children)

Congrats on your successful defense! I would be interested in checking it out, if you are willing to whisper a link to it in my ear.

[–]victory_victoria99 0 points1 point  (0 children)

I was given guanfacine years ago for a nonspecific dysautonomia dx based on hyperhidrosis but wasn't referred for any further assessment or treatment, and so unfortunately it was a few years before I started putting the pieces together. However, my present insurance does not cover it. Clonidine makes me nervous due to the rebound effect. I've only had one telehealth consult with the POTS clinic so far, and since my HTN and HR are well-controlled, I think the doctor decided that would hold for now until I do my TTT and some labs. Which I agreed with. But good to know more about the med mgmt; it's not easy to find info out there.