issie

Depends on if you need the blood vessels to constrict or not.  For me, too much constriction makes me worse.  I have thicker blood and issues with coagulation so I need to thin my blood and dilate some to help my blood flow.  We are all different and have to figure out what our body is doing and why.  When I tried the constricting meds, it made me much worse.  

Issie

11 hours ago, Heartbroken said:

Issie, My condition is very similar to you. Do you get migraines?

Yes, occasionally I do.  Started with silent ones and they progressed to the pain ones.  Not often, thankfully, but do get them.  

As a HyperPOTS subtype, I have higher blood pressure too.  Absolutely none of the mentioned meds here worked for me.  As we further define the subsets, its Interesting that they would still be RXing the same meds tried for other subset types with lower blood pressures.  If we aren't deficient in Salt and we aren't losing it.....why add more.  I had a nephrologist tell me the normal treatment for low renin and Aldosterone is a diuretic.   We dont need to lower either of those (renin or aldosterone) more with ACE or ARB as that part of the system is already broken and too low already.  

For me, I've found other issues like Collagen Binding Factor and Factor VIII blood thickness issues.  Instead of vasoconstricting blood vessels I need to dilate and thin blood.  There can be so many reasons for us having HyperPOTS.  Also the triad with MCAS and EDS.  There is alot of genetics at play here.  I've basically had all these things most of my life.  Just age has intensified some things.  It is generations in my family.  I just got results from a study done with my sis at University of Utah and genetics.....lots of genetic mitrochondrial issues.  

I know we would all like a list and an order to go in.  But this is just not possible with the complexity we all seem to have in our own individual puzzles.  

As for medicine, for me.....still my best thing is 1/2 to 1 50mg. Tramadol and a 10mg Bentyl.  I use enzymes for blood thinners and some herbs to help slightly vasodilate my veins.  Light Compression to knee when traveling and abdominal binders, still a help.  

Also have been in treatment for Lyme and CIRS and fungus found in organ biopsy and blood.  This has been a huge help.  Still treating mostly with enzymes and herbs.

Movement is essential with this subset type.  We have to assist our heart with pumping for blood flow.  Fidget as much as possible and walk, if you can.  At least move your legs somehow.  

Issie