hyperadrenergic POTS versus Hyperthyroidism

[pattismith]

https://www.healthrising.org/blog/2...pots-dsyautonomia-international-conference-v/

This article from healthrising (Cort Johnson) made me think about similarities between these two, for example tachycardia at rest, and constant sympathetic hyperactivity.

And also:


"Biaggioni reported that the valsalva maneuver – which researchers do to stress the autonomic nervous system – can be helpful in diagnosing hyperadrenergic POTS. In the hyperadrenergic group, the maneuver – which can be done at home – often causes what Biaggioni called an “adrenergic crisis” consisting of episodic flushing, severe high blood pressure, and tachycardia (rapid heart beat).

• How to do the Valsalva Maneuver – Variations of the Valsalva maneuver exist, but the typical maneuver simply consists of closing your mouth, pinching your nose, and blowing out as if you were clearing your ears coming back down from higher altitudes."

In normal people, the Valsava maneuver is supposed to activate the parasympathetic system and lower the HR.

But when I did it, I had the opposite (tachycardia), exactly like Hyperadrenergic POTS people.
By the way, I don't have POTS (well I don't think I have it), but I am currently hyperthyroid (Graves), which produces a similar sympathetic super-activation.

@Learner1 , as the beta adrenergic acetylcholine receptors' antibodies may be involved, I sent blood to Celltrend to see if I have it or not..

 

[Learner1]

That's a good thought @pattismith - there are some similarities between symptoms of hyperthyroid and hyper POTS. Though, my experience with being on too high a dose of T3 was that I ran warm, where POTS for me hasn't had much impact on my thermostat. But I've heard some people have issues with thermoregulation. There does seem to be a growing consensus that dysautonomias seem to be autoimmune, so worth checking out.

 

[pattismith]

@sb4,

I remember you have heart pounding but not heart racing. Do you know your HR at rest when supine?

 

[sb4]

@sb4,

I remember you have heart pounding but not heart racing. Do you know your HR at rest when supine?

When supine my HR is generally 70-90. When I was at my worse upon standing it would shoot up to 170+. Now I can stand for perhaps an hour and it maybe will go into the low hundred so significant improvement there.

You are correct about the heart pounding, it is a separate thing. This too has fortunately improved over the last few years although it is still very present.

 

[pattismith]

When supine my HR is generally 70-90. When I was at my worse upon standing it would shoot up to 170+. Now I can stand for perhaps an hour and it maybe will go into the low hundred so significant improvement there.

You are correct about the heart pounding, it is a separate thing. This too has fortunately improved over the last few years although it is still very present.

If you could monitor your HR under Valsava maneuver with your doc, you would know if your POTS are hyperadrenergic, it's a quite easy method, but better done by a doc.
Did you have POTS antibodies panel done?

 

[sb4]

If you could monitor your HR under Valsava maneuver with your doc, you would know if your POTS are hyperadrenergic, it's a quite easy method, but better done by a doc.
Did you have POTS antibodies panel done?

WHilst having the ttt I had my epinephrine measure and it was in normal range. My understand is it would be significantly out of range if hyperadrenergic POTS.

Having said this just as I was declining to my worst 3 yrs ago, I was experiencing HR going out of control very regularly. Very heavy heart beats and very quick pulse. Then, one day, it was like a switch was flipped and suddenly my heart was pounding less heavy though still wrongly, and I started experiencing light headedness, weakness, GI upset, etc. It stayed like this for many months at least but possibly still now although it is hard to say. But there was a very clear, long term, switch of symptoms that happened in the middle of the day during a bad episode, someday in july 2016. I felt it instantly like a switch being flipped.

I speculate that it was my body suddenly resisting something in order to save my life (I was also having heart attack like symptoms at this time). Perhaps this something was epinephrine? Only months later did I have my first TTT and 1.5yrs later the one that measured epinephrine.

One of the things that helped me improve after this event is Mirtazapine which blocks aA2 receptor which results in increased epinephrine. So perhaps it was possible that I was hyperadrenergic pots up until this point. Before this point I was working whilst slowly declining and constantly having to deal with very heavy painful heart pounding. Including working on my feet. After this I was bed bound and even though I am significantly better today I can still no longer achieve the same level of walking around on my feet prior to this even. So it makes me wonder what went on in my body that day.

 

[pattismith]

One of the things that helped me improve after this event is Mirtazapine which blocks aA2 receptor which results in increased epinephrine. So perhaps it was possible that I was hyperadrenergic pots up until this point. Before this point I was working whilst slowly declining and constantly having to deal with very heavy painful heart pounding. Including working on my feet. After this I was bed bound and even though I am significantly better today I can still no longer achieve the same level of walking around on my feet prior to this even. So it makes me wonder what went on in my body that day.

Do you still suffer with tachycardia? What drug do you take for it, beta blocker? or Ivabradine?

I just started Ivabradine two days ago, and it is a game changer for me at many levels!

 

[sb4]

Do you still suffer with tachycardia? What drug do you take for it, beta blocker? or Ivabradine?

I just started Ivabradine two days ago, and it is a game changer for me at many levels!

Occasionally but no where near as often as I used to. I had some improvement with ivabradine for a couple days then a significant worsening a few days later that forced me to stop. I repeated this patern many times at various doses yet same thing every time. No idea why it was doing this. Something to look out for though.

 

[pattismith]

Occasionally but no where near as often as I used to. I had some improvement with ivabradine for a couple days then a significant worsening a few days later that forced me to stop. I repeated this patern many times at various doses yet same thing every time. No idea why it was doing this. Something to look out for though.

when you say you had worsening, was it worsening of your tachycardia? Or did you experienced bradycardia or hypotension (which are possible side effects with this drug)?

 

[sb4]

when you say you had worsening, was it worsening of your tachycardia? Or did you experienced bradycardia or hypotension (which are possible side effects with this drug)?

I think it was just a significant overall worsening, though it is hard for me to remember as it was around 3yrs ago. I also remember occasionally having the feeling that someone was pinching my arteries / veins.