Treatment suggestions for Orthostatic Intolerance (POTS or NMH)

Jonathan Edwards said:
Doctors used to recommend tonsillectomies...
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They certainly used to be very common when I was growing up (1960s-70s), and no doubt were over prescribed. But it is also true that they still have their place.

A relative of mine had persistent nasty tonsil infections for years, and went through hell with them, and endless antibiotics. Eventually they were removed and the tonsil problem disappeared permanently, and his overall physical health quickly improved a lot.
 
Just curious if anyone has tried the adrenal cocktail for POTS? Trying to remember...tartar sauce, salt, a juice like lemon (they recommend orange-i am allergic to oranges) and water. Tartar sauce is loaded with potassium.

It can help the adrenals and then possibly the POTS. I think my pots is all adrenal because it didn't start until after I had my thyroid out and my adrenals crashed. Still crashed.

Also, my MCAS brings it on.
 
Jonathan Edwards said:
It is just possible that venous pooling on standing reduces venous return to the heart enough to be critical because of a low blood volume and that this triggers an adrenergic vasoconstriction, as in a compensated or pre-shock situation. However, I would still expect a tachycardia even recumbent I think.
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Julian Stewart and Andrew Del Pozzi ran studies and published papers detailing what I assume is a similar train of thought, @Jonathan Edwards.

I forget the specifics, but from from what I recall with POTS patients they saw an exaggerated transient kick of hypotension upon standing, which led to cerebral hypoperfusion. The hypoperfusion was followed by hyperpnea and resultant hypocapnia. They also saw blood pressure oscillations and resultant altered cerebral blood flow, which they felt caused the cognitive issues.

That train of events corresponded to how I felt during a tilt-table test anyhow. My BP oscillations (on a beat-to-beat BP monitor) must have been quite significant, as they raised an eye-brow of my otherwise thoroughly disinterested cardiologist.
 
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Trish said:
I, for example, developed two distinct phenomena that made standing for more than a few minutes problematic right from the start of my ME.
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I, on the other hand, had for ca. 2 years no orthostatic problems; I had a low pulse (45bpm during night and blood pressure 90/60). It started ~4 months ago. I conclude it's something new, something that developed. I don't know what to do with it and feel uncertain.

Thanks for this discussion.
 
Jonathan Edwards said:
The rapid heart beat might seem disconcerting but in itself it is something we are all happy about when we exercise
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First, thanks for your thoughts about this topic.

What I experience is the following: Pulse rises, and I hear my heartbeat very clearly; blood pressure falls slightly (around 10-15 units max? Don't remember clearly). I feel dizzy, nauseous, I cannot think. It increases with standing duration. It's a shitty feeling.

So it seems in my case only pulse goes up, blood pressure remains the same. In which theory would that fit (if at all)? I sometimes wonder if there's a link to Raynaud's syndrome and temperature regulating problems.
 
Jonathan Edwards said:
In which case things like drinking water and eating salt would seem to be irrelevant.
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Which is my experience. I really drink enough and wouldn't say I have a salt problem. Plus, I have the same drinking and eating behavior as one 1 year ago, where I already had ME but not this "standing problem".
 
Inara said:
First, thanks for your thoughts about this topic.

What I experience is the following: Pulse rises, and I hear my heartbeat very clearly; blood pressure falls slightly (around 10-15 units max? Don't remember clearly). I feel dizzy, nauseous, I cannot think. It increases with standing duration. It's a shitty feeling.

So it seems in my case only pulse goes up, blood pressure remains the same. In which theory would that fit (if at all)? I sometimes wonder if there's a link to Raynaud's syndrome and temperature regulating problems.
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The rise in pulse and feeling the heartbeat suggest an adrenaline response. But it does not sound as if the symptoms are due to the adrenaline response itself. So perhaps the adrenaline response is to the symptoms - as would be the case if there was severe pain. Tat would suggest that this is not an autonomic problem so much as an autonomic response to some other problem.
 
Jonathan Edwards said:
The rise in pulse and feeling the heartbeat suggest an adrenaline response. But it does not sound as if the symptoms are due to the adrenaline response itself. So perhaps the adrenaline response is to the symptoms - as would be the case if there was severe pain. Tat would suggest that this is not an autonomic problem so much as an autonomic response to some other problem.
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Could that be why so many of us have horrible reactions to adrenaline in injections? (E.g. at the dentist)
 
Jonathan Edwards said:
So perhaps the adrenaline response is to the symptoms - as would be the case if there was severe pain.
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These are interesting thoughts indeed...had to think how it is in my case. I would have said the high pulse comes first, then dizziness, nausea and the rest, but on a second thought I admit there is a certain possibility I might want to remember it that way because this is my preferred explanation. It is indeed possible a dizziness feeling comes first, then I realize/hear/feel my heartbeat, then the nausea and thinking problems...So I will observe it the next time more closely.

Just intuitively, as a layperson - your chain of arguments makes sense to me. If the pulse goes up, that shows the autonomous system works.

Do you have an idea what the underlying problem could be, causing the adrenaline shot? Sorry if you or someone else already made a guess. I remember something with the brain was suggested (hypoperfusion, other brain damages, natriuretic peptide brain levels).

What does adrenaline make in the body? It widens the vessels, it increases muscle tension - what else?

IF that was the right direction to think, drugs that influence the cardiovascular system (e.g. beta-blockers...) wouldn't help, right?

And with this in mind, does it make sense to make a tilt table test or similar at all?
 
I didn't experience autonomic issues for 10 years into the illness until I had a negative reaction (relapse) to immune modulators that re-activated HHV6 and EBV.

I suspect that aerobic exercise and experiencing PEM might have contributed to the mix over time too.
 
My POTS is under control with Bystolic for years now. It does cause fatigue, but not as much as I experienced with propranolol or bisoprolol. For me it was worth it but I know many PWME can't tolerate beta-blockers.

I elevated the head of my bed for years with some success, but I had to stop because it caused low back pain which has yet to resolve even after a few weeks of sleeping flat, although it's getting better. It took years to actually cause a problem.
 
FWIW dysautonomia was made dramatically worse for me by taking a round of Cipro. Not realizing that was the case, five years later I let someone Rx me another round for an infection. Worse still.

Lesson learned: added Cipro to my "allergies and adverse reactions" list. That stuff should be banned except for extreme emergencies like anthrax.
 
Salt has done nothing for me, or drinking liquids and the neurologist who treats Dysautonomia agreed. She said eating salt does not help this.
 
voner said:
in my case (of n=1),The vasoconstriction (which I’m assuming is there because of The cold feet Symptom) occurs intermittently at all times. this means it is not dependent upon me being upright or lying down. It is also intermittent. This means that that certain times of the day I can be almost assured of cold feet, and at other times of the day, or other days, my feet can have a normal temperature. i’ve noticed that walking can push my feet from being icy cold to normal temperature. it’s seems pretty darn variable...
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n=2
And the reaction to adrenaline in dental injections.
 
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