Treatment suggestions for Orthostatic Intolerance (POTS or NMH)

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.

 

Gaia Licorice Root (alcohol free)

This is my suggestion. Follow the instructions on the bottle. If it works, then great.

 

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.

 

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.

 

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.

 

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".

 

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.

 

Could that be why so many of us have horrible reactions to adrenaline in injections? (E.g. at the dentist)

 

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?

 

No, that would be the other way around.

 

I don't think I can speculate much further.

 

Could it be that something calls for adrenaline, which is poured out, and then the adrenaline causes the nausea and dizziness and so on because the body reacts badly to adrenaline?
I.e. there is some cross-reaction.

 

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.

 

Would this include immunoglobulins?

 

I took Transfer Factor that possibly increased immunoglobulins antibodies.

 

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.

 

n=2
And the reaction to adrenaline in dental injections.