kluesyk Posted May 21, 2011 Report Share Posted May 21, 2011 I have been diagnosed with Hyperadrenergic POTS this past year and would like to know what treatments have been successful for others?I have tried aldomet(methyl-dopa) and propranolol which made me worse. Midodrine helped but caused too much asthma for me.Compression hose and increasing fluids and salt have helped some.I think I may have a mast cell activation disorder also as I have facial and chest flushing without sweating and 20years of chronic angioedemas.Any information would be greatly appreaciated. I am getting very discouraged, having a bad week. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted May 21, 2011 Author Report Share Posted May 21, 2011 I meant Mestinon helped instead of Midodrine. I have never tried Midodrine, yet... sorry brain not working good today! Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 22, 2011 Report Share Posted May 22, 2011 Hi there, sorry you're having a bad week. The combination of meds listed below seem to be gradually helping me, along with very slowly increasing exercise. I had also been underestimating the power of salt I think - I was eating as much salt as I could stand, but when I actually starting taking sodium chloride capsules with meals I noticed a real difference.I am still quite up and down though, with real difficulty around the time of my period. But overall it feels like instead of gradually (and then rapidly) declining, it's more like two steps forward and 1.5 steps back now (if that makes any sense). Quote Link to comment Share on other sites More sharing options...
kluesyk Posted May 22, 2011 Author Report Share Posted May 22, 2011 thank you Sarah4 for your reply!I too have hypothryoidism, H-pots, chronic swellings and muscle pain. I also had a mixed connective tissue disease diagnosed 20 years ago which now my ANA and sed rate are normal and it is considered "in remission". and lest I forget, the Addison's(adrenal failure). I also had a head injury right before the POTS symtoms started 6 years ago, so maybe that is related,too.I already take Nature-throid(natural thyroid), Cortef(addison's), Zyrtec and Benadryl, Pepcid C, asperin, Lyrica 25mg(leg pain),Percocet for migraines and days the muscle pain is really bad.I would like to try the Midodrine, but my cardiologist is hesitant. Other things that cause vasoconstriction help me like coffee, compression hose, ice, and my migraine medicine Relpax helps too. I will talk to him again about trying a small dose.Going to see my neurologist Monday as I have gotten so weak. My muscles have no strength. I also have trouble with LOW potassium and magnesium. I take supplements.What kind of doctor did you see to help you with your POTS?Thank you again for your help!!!!! Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 22, 2011 Report Share Posted May 22, 2011 You're very welcome. I saw an autonomic specialist for my POTS. The initial cardiologist I saw wasn't very helpful (or kind) but he did prescribe a low dose of midodrine, which helped a bit. The POTS specialist increased the midodrine to 10 mg every four hours and 5 mg evening, and that helped more. I find I have to treat both the POTS and MCAD symptoms simultaneously and in a kind of balance to get any improvement. I think that Nalcrom/Gastrocrom (mast cell stabilizer) is an important med for me too.I am still working at this, but am happy to answer any questions I can. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 24, 2011 Report Share Posted May 24, 2011 I have hyperadrenergic POTS secondary to an autoimmune condition - mestonin helped me probably the most out of the medications available. beta blockers can help at night but ruin my sleep. licorice used to help as well. Quote Link to comment Share on other sites More sharing options...
DBP4620 Posted May 25, 2011 Report Share Posted May 25, 2011 I just got diagnosed with hyperadrenergic POTS and my doc put me on Clonodine which he finds useful in people with our condition. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted May 25, 2011 Author Report Share Posted May 25, 2011 Thanks everyone for your replies.I got my neurologist to perscribe a small amount of Midodrine. Waiting on pharmacy to get it in. Hope it helps.Getting discouraged....I am such a fix it person, and this is one I can't fix.Thanks again for taking the time to offer suggestions. Quote Link to comment Share on other sites More sharing options...
sj75 Posted May 26, 2011 Report Share Posted May 26, 2011 i have H-pots to and my consultant was reluctant to put me on anything vaso constricting due to the surges in my bp.I am currently on bisoprolol, citalopram and clonidine for pots (have other meds for other symptoms to ). The clonidine is supposed to be good for autonomic issues as it works on the brain rather then directly on the vessels apparently. Im currently building up my dose as the aim (i think) is to get to 400 mcgs per day for optimum affect.x Quote Link to comment Share on other sites More sharing options...
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