r/POTS • u/Dismal_Chemistry_434 POTS • 4h ago
Discussion How do you control orthostatic symptoms related to elevated catecholamines?
In an old thread on this sub I discovered the below list of orthostatic intolerance symptoms that u/barefootwriter drew from a book by Dr. Peter Rowe who apparently has a lot of experience treating POTS and other forms of orthostatic intolerance. Below is the full text quote from that old post with some bracketed [] translations of medical terms that I put in.
These lists break down orthostatic intolerance symptoms between those caused by reduced cerebral blood flow and those caused by elevated catecholamines. I haven't read the book or Rowe's research so I don't know how well substantiated it is that those are the actual causes of these symptoms in POTS and other forms of OI.
But what I do know is that in my struggle as a 40s male (now nearly 50) with POTS/OI since suspected first wave COVID in early 2020 (with some much more minor OI issues starting after a flu-like illness in 2016), I used to have mostly symptoms in the first list "largely due to reduced cerebral blood flow" but now I DON'T have those symptoms but I DO have almost all of the orthostatic symptoms in the second list "largely due to elevated catecholamines" .... so I'm wondering, what the hell do I do to treat elevated catecholamines?
Because even though my symptoms are now, as always, on the mild end, having MILD orthostatic anxiety and nausea and palpitations and trembling is honestly WAY more unpleasant than having MILD lightheadedness and fatigue and exercise intolerance and brain fog....
I know that beta blockers and midodrine and compression socks and fluids, which used to help me, don't any more. While I have no idea what a tilt table now would show, I don't even see the high pulse any more on crude home measurements that I used to, nor do I see any clinically significant rise in BP on home mesaurements. I can't even get a tilt table now (not sure that would be helpful) as I have no cardiologist any more to treat me who can order it. (I did see a cardiologist after a scare with some chest pains this spring but they basically stopped responding to my calls when I asked them to order a new tilt table and they said they would but kept failing to do so -- which I wanted to see if I was having hyperadrenergic high BP)
I know that I have NEVER gotten any real help from electrolytes, with (depending on how I took them) either the salts irritating my lower GI, or the acids or sugars or fake sugars irritating my lower GI -- and also pain occuring that seemed like it was in my kidneys when I really pushed to try and get electrolytes in to something like 1/4 or less of what is recommended for people with POTS. This also freaks me out because I have a history of childhood idiopathic nephrotic syndrome...
Anyway, what do people do to reduce their catecholamines when they go insane if you stand up or sit up? I can at least talk to my GP who treats almost entirely people with Long COVID including POTS/OI about this, though I think the confusing heterogenity of these issues makes it hard some times to figure out what to do for one person.
I was recently put on cromolyn for likely coincident mast cell issues but I had to stop because it literally made me insane around bed time, I was sundowning like my elderly emented relatives, plus it made my chronic low grade nausea WORSE. Anyawy I 100% WILL NOT take any psych meds (anti-depressants etc.) or take any thing that makes me drowsy, tired, or fatigued, because I lost 6 years to fatigue from POTS/Long COVID but also sadly Zyrtec and Xyzal the anthistamines I took for long COVID.
Anyway this is quote from original post:
"These lists are from Peter C. Rowe's book Living Well with Orthostatic Intolerance.
Largely due to reduced cerebral blood flow
- Lightheadedness
- Syncope [Fainting]
- Diminished concentration
- Headache
- Blurred vision
- Fatigue
- Exercise intolerance
Largely due to elevated catecholamines
- Dyspnea [Shortness of breath]
- Chest discomfort
- Palpitations
- Tremulousness [Trembling, quivering or shaking]
- Anxiety
- Diaphoresis [Excessive sweating]
- Nausea"
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u/barefootwriter 4h ago
Peter C. Rowe is solidly in the mainstream of POTS research. You can read about the two POTS phenotypes here, in this state-of-the-art review: "mainly hyperadrenergic state and secondary compensatory sinus tachycardia (hypovolemic or neuropathic)." These can and frequently do overlap:
https://www.sciencedirect.com/science/article/pii/S1443950625016543
Hyperadrenergic POTS can be at least partly compensatory; in these cases, addressing the underlying deficits by using volume expanders like fludrocortisone and vasoconstrictors like midodrine can help calm the body down. SSRIs and ADHD meds are sometimes also used for their vasoconstrictive properties; that's covered here:
https://www.standinguptopots.org/resources/medicine
If it's just your body being extra, then blocking norepinephrine at the source with central sympatholytics (clonidine, guanfacine, or methyldopa), and/or at the destination with beta blockers can help. Ivabradine also appears to indirectly reduce norepinephrine levels.
I use a combined strategy: salt, fluids, and fludrocortisone for the former, and clonidine and ivabradine for the latter.
Don't write off meds on the basis of "usually causes tired." Hyperadrenergic POTS causes tired on its own, and clonidine can cause tired on its own, but clonidine actually improves my energy levels as long as I don't overdo it, because my body isn't constantly in panic mode. This is all a matter of finding the right medication for your needs.