Breaking Up POTS: Hyperadrenergic vs Non-hyperadrenergic

[Cort]

Do you have POTS? If you do - do you know what kind you have?

According to Vanderbilt breaking POTS into categories is not very useful - http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008 - because the categories are leaky; i.e. some people with one category have similar symptoms and problems as the other. Vanderbilt simply recommends extensive testing.

A study just examined hyperadrenergic POTS - which is typically characterized by high norepinephrine levels upon standing and non-hyperadrengic POTS and it did find some distinct differences. Mean heart rates while lying down were much higher in hyper POTS (84 beats per minute), and lower cardiac vagal (ie parasympathetic nervous system) activity and higher sympathetic nervous system activity. (Talk about wired and tired!)

The non-hyperadrenergic POTS patients had lower diastolic blood pressure and were more prone to fainting during a tilt table test.

All in all higher heart rates and sympathetic nervous system activity on hyper-adrenergic POTS more problems with blood pressure and fainting in the more common form of POTS.

I believe that @Issie has hyper-POTS (?)

It was a small study though.

Clin Neurophysiol. 2016 Feb;127(2):1639-44. doi: 10.1016/j.clinph.2015.08.015. Epub 2015 Sep 4.Hemodynamic profile and heart rate variability in hyperadrenergic versus non-hyperadrenergic postural orthostatic tachycardia syndrome. Crnošija L1, Krbot Skorić M2, Adamec I2, Lovrić M3, Junaković A2, Mišmaš A2, Miletić V2, Šprljan Alfirev R2, Pavelić A1, Habek M4.
OBJECTIVES:

To investigate differences in hemodynamic profile between hyperadrenergic and non-hyperadrenergic postural orthostatic tachycardia syndrome (POTS) in response to head-up tilt test (HUTT).
METHODS:

Ten patients with hyperadrenergic and 33 patients with non-hyperadrenergic POTS underwent HUTT consisting of a 10-min supine phase and 30-min 70° tilted phase. Heart rate (HR), systolic and diastolic blood pressure (dBP), and heart rate variability (HRV) parameters of the two groups were compared.
RESULTS:

Hyperadrenergic patients had higher supine HR (82.6 ± 16.3 bpm vs. 73.8 ± 10.4 bpm, p=0.048). Supine HRV analysis showed significantly lower cardiac vagal activity and possible predominance of cardiac sympathetic activity in the hyperadrenergic group. Non-hyperadrenergic patients had lower dBP during the first four minutes of tilt. Furthermore, 60% of non-hyperadrenergic patients had lower average dBP in the 1st minute of tilted phase when compared to supine values, whereas only 2 of 10 hyperadrenergic patients exhibited the same response. Syncope or intolerable symptoms, causing early ending of HUTT, developed earlier in the non-hyperadrenergic group (8.9 ± 6.8 min vs. 21.2 ± 3.5 min, p=0.001).
CONCLUSION:

Hyperadrenergic and non-hyperadrenergic type of POTS seem to have distinctly different response to HUTT.
SIGNIFICANCE:

This study has shown significant differences in hemodynamic response to HUTT between hyperadrenergic and non-hyperadrenergic type of POTS indicating possible differences in their pathophysiology.
Copyright © 2015 International Federation of Clinical Neurophysiology. Published by Elsevier Ireland Ltd. All rights reserved.

 

[Who Me?]

It's impossible to find a doc who even understands POTS let alone try to find someone who can determine which kind. And many people, me @Veet for example have weird atypical symptoms of POTS. And my poor man's tilt table showed POTS and OI.

 

[Issie]

I think the first post you listed is saying there can be more than one symptom connected to the different subset types and depending on who you are talking to (including doctors), the true definition becomes unclear or crossovered and muddy. I do think it's important that we have the subsets and then make all the symptoms understood for each subset type. We knew, those of us that are truly HyperPOTS, we were different than those with lower blood pressures and who continually faint. We also realized that the meds the docs gave to that subset type of POTS, didn't work for us. We had the same DX of POTS - yet we are so different. We have all fought hard to get our subset types distinguished and we want it made less muddy and more clear. We are all individuals and no one will be exactly the same......but having a doc know what type of POTS person he is dealing with - goes a long way towards not making mistakes with our treatment. Some things just make us worse.

As far as how a HyperPOTS person feels with high norepinephrine levels with standing and higher blood pressures.....one guy (POTLUCK) who used to be on the DINET site described it best....." it feels like your in a room with a mountain lion". You have that adrenal surge that happens, dizziness, head pressure, naseau, complete feelings of anxiety and fear. Your heart is beating so hard in your chest to get blood to it and your head that you feel you are running a marathon (or away from a lion) though having only risen from a chair to stand. Then, possibly the longer you are upright and standing, comes the slight drop in blood pressure from a higher blood pressure (that all this body compensation created) and you get another wave of naseau, dizziness, lightheadedness, faintness as all the color drains from your face and you look around hoping the couch will catch you if for some reason this is "the one" that will make you pass out. But that seldom happens with a HyperPOTS person. (I've fainted three times and thankfully my hubby was there to catch me two of the times and I was seated the other time. Makes me sad for those who faint without warning and have major injuries from their falls.) I'm not saying that the other subset types don't have these responses, but I don't hear them complaining, as much, as us with high norepinephrine and the anxiety feelings those surges bring.....wish the lion would leave the room.

I'm glad Vanday is acknowledging that there is more than one meaning to "HyperPOTS", and it sure is nice that it is being recognized as its own subset type of POTS. We sure didn't fit into the mold of those with what is considered POTS with lower blood pressures. It's a wonder we even got our diagnosis. But, it does explain alot.....we still need more answers.

It is interesting that so many of us with HyperPOTS have EDS and MCAS. And now many are finding Lyme and other protozoa. And many of us definitely have faulty autoimmune issues. (I have vitiligo, alopecia and hypogamaglobulinemia.) I'm finding the pieces of the puzzle to explain them.....but, not sure there will be a "cure", but at least I know what are my best "purple bandaids". It helps give a little more quality to life. And isn't that what matters anyway, quality not so much quantity? But I'd like to have them both - in that order.

Issie

 

[weyland]

According to Vanderbilt breaking POTS into categories is not very useful - http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008 - because the categories are really leaky

Perhaps clinically yes but I think it should be broken down into subsets for research purposes. There are a lot of causes of POTS.

 

[weyland]

It's impossible to find a doc who even understands POTS let alone try to find someone who can determine which kind. And many people, me @Veet for example have weird atypical symptoms of POTS. And my poor man's tilt table showed POTS and OI.

It is really hard to find out. I finally was able to get full autonomic testing but they didn't do a plasma norepinephrine test during the tilt table so I still don't know if I have hyperPOTS or not. I believe I do have it because normally being upright causes me to get diastolic hypertension, but oddly enough on the tilt table my BP actually dropped enough to quality as orthostatic hypotension.

 

[Cort]

I think the first post you listed is saying there can be more than one symptom connected to the different subset types and depending on who you are talking to (including doctors), the true definition becomes unclear or crossovered and muddy. I do think it's important that we have the subsets and then make all the symptoms understood for each subset type. We knew, those of us that are truly HyperPOTS, we were different than those with lower blood pressures and who continually faint. We also realized that the meds the docs gave to that subset type of POTS, didn't work for us. We had the same DX of POTS - yet we are so different. We have all fought hard to get our subset types distinguished and we want it made less muddy and more clear. We are all individuals and no one will be exactly the same......but having a doc know what type of POTS person he is dealing with - goes a long way towards not making mistakes with our treatment. Some things just make us worse.

As far as how a HyperPOTS person feels with high norepinephrine levels with standing and higher blood pressures.....one guy (POTLUCK) who used to be on the DINET site described it best....." it feels like your in a room with a mountain lion". You have that adrenal surge that happens, dizziness, head pressure, naseau, complete feelings of anxiety and fear. Your heart is beating so hard in your chest to get blood to it and your head that you feel you are running a marathon (or away from a lion) though having only risen from a chair to stand. Then, possibly the longer you are upright and standing, comes the slight drop in blood pressure from a higher blood pressure (that all this body compensation created) and you get another wave of naseau, dizziness, lightheadedness, faintness as all the color drains from your face and you look around hoping the couch will catch you if for some reason this is "the one" that will make you pass out. But that seldom happens with a HyperPOTS person. (I've fainted three times and thankfully my hubby was there to catch me two of the times and I was seated the other time. Makes me sad for those who faint without warning and have major injuries from their falls.) I'm not saying that the other subset types don't have these responses, but I don't hear them complaining, as much, as us with high norepinephrine and the anxiety feelings those surges bring.....wish the lion would leave the room.

I'm glad Vanday is acknowledging that there is more than one meaning to "HyperPOTS", and it sure is nice that it is being recognized as its own subset type of POTS. We sure didn't fit into the mold of those with what is considered POTS with lower blood pressures. It's a wonder we even got our diagnosis. But, it does explain alot.....we still need more answers.

It is interesting that so many of us with HyperPOTS have EDS and MCAS. And now many are finding Lyme and other protozoa. And many of us definitely have faulty autoimmune issues. (I have vitiligo, alopecia and hypogamaglobulinemia.) I'm finding the pieces of the puzzle to explain them.....but, not sure there will be a "cure", but at least I know what are my best "purple bandaids". It helps give a little more quality to life. And isn't that what matters anyway, quality not so much quantity? But I'd like to have them both - in that order.

Issie

Thanks Issie for your insights

Yes, Vanderbilt simply says, if I get them right, that there is Hyper-adrenergic POTS but all sorts of flavors and some people with it have similarities to other kinds of POTS. Eventually I think we'll get better categories; hyper-adrenergic POTS will stay and we'll get different subsets of it.

Great description - it made me understand hyper-adrenergic POTS more - thanks

." it feels like your in a room with a mountain lion". You have that adrenal surge that happens, dizziness, head pressure, naseau, complete feelings of anxiety and fear. Your heart is beating so hard in your chest to get blood to it and your head that you feel you are running a marathon (or away from a lion) though having only risen from a chair to stand. Then, possibly the longer you are upright and standing, comes the slight drop in blood pressure from a higher blood pressure (that all this body compensation created) and you get another wave of naseau, dizziness, lightheadedness, faintness as all the color drains from your face and you look around hoping the couch will catch you if for some reason this is "the one" that will make you pass out. But that seldom happens with a HyperPOTS person. (I've fainted three times and thankfully my hubby was there to catch me two of the times and I was seated the other time. Makes me sad for those who faint without warning and have major injuries from their falls.)

 

[Issie]

It is really hard to find out. I finally was able to get full autonomic testing but they didn't do a plasma norepinephrine test during the tilt table so I still don't know if I have hyperPOTS or not. I believe I do have it because normally being upright causes me to get diastolic hypertension, but oddly enough on the tilt table my BP actually dropped enough to quality as orthostatic hypotension.

They don't do them together. You have to lie in a quiet room for 30 minutes before standing. And the blood has to be handled in a certain way with ice. I understand some aren't doing the test properly. If you are above 600 with standing that's a clue. I'm above that. Then they start checking you for a Pheo - adrenal tumor. I did not have that. You almost wish for one, that can have surgery and be fixed. HyperPOTS, with me, hasn't been "fixed", yet.

Issie

 

[Issie]

Quote Cort - Great description - it made me understand hyper-adrenergic POTS more - thanks
__________________
Glad it helped. There is much more. MCAS has its own presentation and that can be varied too, and is different than POTS - yet connected.
Issie