Looking_for_light Posted June 21, 2023 Report Share Posted June 21, 2023 Hi all Anyone suffer debilitating chronic bouts of shakiness due to hyperadrenergic PoTS (H P)? What is the mechanism of this terrible problem in this patient group? Is it the body trying to clear excess catecholamines or something totally different? Anyone know any papers / research specifically on this? Which of the meds to help symptom management that are more targeted to H P (CCB's, BBs, centrally acting anti-hypertensives etc) may help this problem? Anyone find that Corlanor (Ivabradine) did anything to reduce this symptom in addition to slowing HR? Many thanks. Sending best regards to you all Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 21, 2023 Report Share Posted June 21, 2023 2 hours ago, Looking_for_light said: Anyone suffer debilitating chronic bouts of shakiness due to hyperadrenergic PoTS (H P)? What is the mechanism of this terrible problem in this patient group? Is it the body trying to clear excess catecholamines or something totally different? I have Hpots and get tremors ( or shakiness ) when in a flare. It is - in my case - considered to have the same mechanism as going into shock from excess norepinephrine. In my case the vasoconstriction gets to the point of me having seizures from not enough blood reaching the brain. CCB, Carvelidol and twice weekly IV fluids have greatly improved these dramatic symptoms. Oral fluids do nothing for me, but the IV fluids provide enough intravasal volume to stop the dumping of norepinephrine. Quote Link to comment Share on other sites More sharing options...
Looking_for_light Posted June 22, 2023 Author Report Share Posted June 22, 2023 IV fluids sound a total gamechanger, but very sadly, not an option here - heartbreaking! Did either the CCB or BB alone help the shakiness and tremors or only the two meds in combination? Many thanks. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted June 23, 2023 Report Share Posted June 23, 2023 I get internal shakes/tremors when I'm either too active or sitting upright without anything to lean on too long. Can sometimes coincide with PVCs when really bad. I think there has been at least some improvement on this symptom over the years, but can't put a finger on why exactly. Perhaps Corlanor, but it's not something that's gone away completely either. Quote Link to comment Share on other sites More sharing options...
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