Sub-type change?

[Jyoti]

Maybe this is self-evident and I am missing obvious information, but given my current state, I would have a rough go trying to find it if it already exists.  No one has ever told me which sub-type of POTS I have.  On the one hand, I have been told to use compression garments, increase my salt, and trialed on the usual drugs, none of which did anything.  My heart rate was moderately high upright (15-130) and quite low supine (48-52).  This was consistent for almost a decade.

In addition, both norepinephrine and particularly epinephrine--supine and upright-- are high enough to warrant an adrenergic diagnosis. 

None of my doctors seemed too interested in differentiating so I let that go.  I think the assumption was that it was neuropathic

In the last month or two, my blood pressure, which has stuck to the lowish moderate range (110/75) for years has suddenly risen.  I am getting readings as high as 140/111.  I know lots of us get higher readings, but mine are....well, mine. I get alarmed (and I get alarmed about a lot of you as well, as you describe anomalies and difficulties.  Just saying.)  And this comes with tremulousness, sweating, shaky legs and arms, an inability to think, heart and neck pounding. 

This could be from something else--I do struggle with potassium  levels and when my heart rate and BP go up, potassium is often the answer.  I am not convinced that it is this time.   And of course, it could be something entirely unrelated to dysautonomia, though I have to admit that lying flat for fifteen minutes start to bring down both BP and HR, though they are still higher than they were on average a few months ago.

I find myself wondering if this is hyperadrenergic POTS, if it was always hyper POTS, or if it morphed somehow.

Any thoughts to share?

Thank you!

 

[MattyT]

Hi Jyoti. Yes, I have a lot of thoughts on this and need to ponder your question while I go for a ride on my bike. I've gone through a lot of this on my own and would be happy to share how you might approach this. Stay tuned...

Okay... Your symptoms, story and numbers for BP and heart rate sound very similar to mine. I had all the same questions that you have and got a lot of conflicting information. Everything got pointed in the right direction when I visited a neuroendocrine specialist who is affiliated with a large medical institution in Boston. He examined me very thoughtfully and listened to my story. He proceeded to measure supine and upright blood pressure and heart rate. He nailed my problem in less than hour and then confirmed it with supine/upright plasma catecholamines. I encourage you to find a dysautonomia clinic or neuroendocrine specialist as well. The treatment of hyperadrenergic POTS is different than other types of POTS. Importantly, from experience, the wrong treatment can create some very serious complications by making a bad situation worse.

Also - I'm a science nerd and have read a lot. I went into the visit describing my symptoms from the perspective that I suspected hyperadrenergic POTS. That made his job a lot easier. The neuroendocrine specialist did the following after listening to my story:

• After being supine and at rest for 10 minutes, he measured my BP and radial pulse. He also observed the pulse variability.
• He asked me to stand upright/inactive and observed the same measurements at (roughly) 1 minute, 3 minutes, 5 minutes.
• He ignored what happened during the first minute. That doesn't count unless you have extreme symptoms. Also, some medications will invalidate this type of functional test. 

He suspected POTS because my pulse increased and remained elevated. POTS is generally suspected when the upright pulse is  30 BPM over the supine pulse measurement. Then, if the BP measurement is higher when upright, the POTS may be due to excess catecholamines. At this point, he sent me to the lab for supine/upright fractionated plasma catecholamine measurements. My upright norepinephrine level was fairly high which he considered confirmation of hyperadrenergic POTS; no TTT was involved. Conversely, if BP drops when upright (after the 1st minute) it probably isn't hyperadrenergic.

It sounds like you had catecholamine levels done before. They are very difficult to measure, sample and interpret. If everything is being done exactly right, a very skilled expert should be interpreting them (not your average clinician). If you attempt any of this on your own, you will need someone to help you take measurements and assure that you are safe from injury due to falling. 

Excess catecholamines found in hyperadrenergic POTS can cause a lot of other problems with biochemistry, electrolytes, glucose management, etc. Once I started taking the correct meds most of my biochemistry normalized. It was magical. 

I hope this helps.

 

 

[MikeO]

2 hours ago, Jyoti said:

No one has ever told me which sub-type of POTS I have.  On the one hand, I have been told to use compression garments, increase my salt, and trialed on the usual drugs, none of which did anything.

Oh @Jyotimy parting MyChart with my faint clinic i pointed this out as not effective while being aware is one thing (usasul drink more water and get up slowly) helps staying out of trouble in the short this is not a fix. I also complained about what subtypes of nOH or orthostatics i have and the response is alway does not matter treatment is the same which is BS.

3 hours ago, Jyoti said:

In addition, both norepinephrine and particularly epinephrine--supine and upright-- are high enough to warrant an adrenergic diagnosis. 

I tried to get tested for this but since the dysautonomia clinics have closed in wisconsin so no luck. Sure would like to see someone with a second test while on a beta blocker. I have had three stress tests while on one and was to show the med dose is effective.

 

3 hours ago, Jyoti said:

In the last month or two, my blood pressure, which has stuck to the lowish moderate range (110/75) for years has suddenly risen.  I am getting readings as high as 140/111.  I know lots of us get higher readings, but mine are....well, mine. I get alarmed (and I get alarmed about a lot of you as well, as you describe anomalies and difficulties.  Just saying.)  And this comes with tremulousness, sweating, shaky legs and arms, an inability to think, heart and neck pounding. 

I also get sudden changes in blood pressures but have stabilized as of late. not sure why but my routine is working. Low blood sugars can cause this as well along with some meds. my worst combo was metoprolol/lisinopril.

3 hours ago, Jyoti said:

This could be from something else--I do struggle with potassium  levels and when my heart rate and BP go up, potassium is often the answer.  I am not convinced that it is this time.   And of course, it could be something entirely unrelated to dysautonomia, though I have to admit that lying flat for fifteen minutes start to bring down both BP and HR, though they are still higher than they were on average a few months ago.

I am conceived that i have some other issue going on (still sure it is some form of ANS neuropathy) but little did i know that my nOH (stressed over this as MSA and parkinson's) is the primary cause and the secondary is diabetes and ripped faint for not picking up on this. just mentally taxing for sure. what we did find (endo, gastro and PCP) is i do not absorb nutrients like i should (B12 and D) was deficatant for sure. I have been treated for SIBO and has helped big time and my insulin therapy is working to make life better. 

Faint was adamant that i never lay flat as it would cause supine blood pressure but this is far from the case and was recorded at my last procedure. one more ding for them "drink more water!". but off my feet will help bring down vitals (BP's and HR's) PVD issues i am guessing?

At the start of november my orthostatics picked up a bit but a few antihistamines pretty much knocks it out (vasodilation) sure i am sensitive from this and to be honest a bodies normal response to a sudden sustained drop in BP mimics hPOTS and will at some point will cause a bad event (tachycardia, weak buckling legs as well as seizures) even in a healthy person. just my 2 cents. 

Please keep after what bothers you even if it is one symptom at a time.    

[MTRJ75]

Our symptoms are so wide and varying that maybe it doesn't matter what they call it. Maybe we all feel like we have things going on that they don't even have a name for. We basically have an idea what's going and it's more important to me for them to treat it all than to sort me and put me in a box, which could cause more problems than it solves. 

[Jyoti]

Thanks to all for your thoughts and experiences.  It is always so helpful to hear from others, particularly as our symptoms are so heterogeneous and so few doctors have the slightest clue.  

@MattyT--I appreciate your specificity and the story of your getting a diagnosis of hyper-adrenergic POTS.  I can relate to the way you went in with a plan to share your symptoms with an end in mind.  I have done that a few times too--that is how I got my diagnoses of ME/CFS, CCI and AAI and as well, how I convinced my doctors to take the steps that led to a TTT.  My first TTT was halted when my BP dropped to 43/32.  This has been my pattern for about a decade.  My BP drops rather dramatically upon standing and keeps going down if I don't do something to stop it.  Simultaneously, my HR goes up 40-70 bpm.  My dysautonomia specialist does the testing you describe getting every four months.  And for a few years, the results have been pretty consistent.

But lately....the diastolic may rise and stay high even as the systolic drops.  And most recently, BP goes up at random times, stays up, along with HR.  It is a big change and I am confused!  I guess I will have to keep tracking.  

5 hours ago, MikeO said:

i pointed this out as not effective while being aware is one thing (usasul drink more water and get up slowly) helps staying out of trouble in the short this is not a fix.

Totally with you @MikeO.  Honestly, I have gotten nothing out of these suggestions. I  like them--in theory. Would much rather take a non-pharmacological approach, but ...  only if it makes a difference!

 

5 hours ago, MikeO said:

I tried to get tested for this but since the dysautonomia clinics have closed in wisconsin so no luck.

That stinks.  I don't know what is possible for you there, but I got these tests done at Labcorp.  My dysautonomia doc ordered them and while it was a production--with me coaching the lab tech all the way through--it did get done correctly in the end.  I was a little surprised, since it looked like it was going to be too much for them, but together, we pulled it off.  I found it to be one of the helpful tests since it was noticeably abnormal, and the difference between supine and upright confirmed some of my felt experience.

 

5 hours ago, MikeO said:

Low blood sugars can cause this as well along with some meds.

Part of the puzzle.  Good thing we are so curious, because most of our doctors--not so much!  Like my hypokalemia issue--my bp can go through the roof and the treatment is simple--potassium.  But unless I tell them that in the ER, they start looking for cardiac problems.  Which I don't mind having checked out once the IV is in my arm!

 

5 hours ago, MikeO said:

I am conceived that i have some other issue going on

I think we are at a pivotal place in the breakdown of silo-ed medicine, where everyone specializes in one system or set of body parts and has no earthly idea what is going on in the others.  Our multi-systemic failures are outside normal practice these days and it falls on us to connect the dots.

 

5 hours ago, MikeO said:

a few antihistamines pretty much knocks it out

Interestingly, I took fexofenadine this morning in the midst of an 'episode' after not taking it for some months and I think it was instrumental in calming things down.  Thanks for the confirmation.

 

5 hours ago, MTRJ75 said:

Our symptoms are so wide and varying that maybe it doesn't matter what they call it. Maybe we all feel like we have things going on that they don't even have a name for. We basically have an idea what's going and it's more important to me for them to treat it all than to sort me and put me in a box, which could cause more problems than it solves. 

I mostly tend to agree!  Which is why I have accepted the stance that says--typing your POTS is not important; we want to treat the symptoms.  But...I am feeling now like -- something new is afoot, and if the framework includes three sub-types, do they have any relevance to these new and unwelcome developments?  But it is still a good thing to keep in mind.

[Sarah Tee]

@Jyoti, were you saying that your top number went up and bottom number dropped? As in wide pulse pressure?

[Jyoti]

@Sarah Tee--the opposite.  In general, when I am upright, my diastolic (bottom number) holds steady or rises a small amount.  The systolic (top number) drops a lot.  The other day after standing for five minutes, my bp was 101/90.  So narrow pulse pressure.  I am used to that, but not to this new development which finds me with both numbers elevated when standing.

 

[MikeO]

2 hours ago, Jyoti said:

@Sarah Tee--the opposite.  In general, when I am upright, my diastolic (bottom number) holds steady or rises a small amount.  The systolic (top number) drops a lot.  The other day after standing for five minutes, my bp was 101/90.  So narrow pulse pressure.  I am used to that, but not to this new development which finds me with both numbers elevated when standing.

 

Not sure what the narrow pulse means. my doc's don't even use the term albeit they are aware. They do recognize my low diastolics as a stressor or when i have issues. i for sure would take a 101/90 but not a 101/60. the 101 systolic does not affect me one bit and do hit the number often. My norm is 145/90. I can see heart rate playing into this. it is a bit of a go to catch vitals for sure. 

Best and keep after it.

[Jyoti]

Thanks @MikeO.  And best to you.  I am inspired by your determination!  Sarah's as well.

[Sarah Tee]

@Jyoti, ah, sorry, my mistake. I know a little bit about wide pulse pressure but nothing about narrow.

I wonder if you could get your lying and standing blood tests done again.

I did find this discussion about what might be occurring in patients with CFS with orthostatic intolerance and narrow pulse pressure:

Quote

The striking finding of abnormally narrowed pulse pressure in the < 4 ME/CFS group suggests a significant drop in ventricular stroke volume while standing in place that can only be explained by a relative hypovolemia. Typical causes of an abnormally narrowed pulse pressure are constrictive (cardiac tamponade or restrictive pericarditis), outflow obstruction (aortic or pulmonary stenosis), pump failure from a diseased heart, or shock (anaphylactic, septic, cardiogenic) [12] and none of these are present in the ME/CFS patients enrolled in this study.

The pressing research question raised by this study is: What is causing the problem? Small studies that have not yet been replicated suggest autoantibodies against adrenergic and muscarinic receptors [19], or a neuroinflammatory process [20] may be playing a role. Invasive cardiopulmonary exercise test (iCPET) was used to show that ME/CFS patients have reduced atrial filling pressures and impaired systemic oxygen extraction during exercise compared to healthy people. This may be related to abnormal delivery of oxygen due to microscopic left to right shunt at the tissue level, and/or abnormal cellular uptake of oxygen [21].

We hypothesize that patients with ME/CFS have lower tolerance of the perfusion changes induced by orthostatic stress, from autonomic nervous system dysregulation in combination with abnormal cellular energy metabolism.

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02481-y

 

It’s an interesting article, I think, but suffers from overuse of acronyms and abbreviations. You almost need to print them out so you can hold up the list and keep referring to it. Now that journals are published online, and there are no printing space constraints, I think they could ease back on them.

[Jyoti]

Thanks @Sarah Tee!  Interesting stuff, well worth the read for me.  

[little_blue_jay]

On 12/8/2023 at 1:28 PM, MikeO said:

Oh @Jyotimy 

Faint was adamant that i never lay flat as it would cause supine blood pressure

my orthostatics picked up a bit but a few antihistamines pretty much knocks it out (vasodilation) 

Can you clarify what you meant by not lying down as it would "cause supine blood pressure "?  Cause it to go high or low?

 

Also what did you mean your orthostatics picked up , they got better on antihistamines,  or worse?

I always thought antihistamines make POTS worse?

How are you doing now?

[MikeO]

14 minutes ago, little_blue_jay said:

Can you clarify what you meant by not lying down as it would "cause supine blood pressure "?  Cause it to go high or low?

Sorry the clinic said it would go high as it is a trait of neurogenic orthostatic hypotension. to be honest i have only seen high bp's a few times when lying down so i have disregarded the recommendation.

19 minutes ago, little_blue_jay said:

Also what did you mean your orthostatics picked up , they got better on antihistamines,  or worse?

so when my body starts producing histamine from being sick, allergies and what not i can feel that i my vascular system is vasodilated which i will get notable drops in blood pressure when standing up. even blowing my nose will cause me to blackout. addressing the histamine with antihistamines usually works for me to get back on track (i do not take it often or long term). not sure if antihistamines are contraindicated for folks with POTS (i don't have it) but will get postural orthostatic tachycardia short term (food is the stressor).

34 minutes ago, little_blue_jay said:

How are you doing now?

over the last couple of years i have made huge improvements one change at a time.      

[little_blue_jay]

1 hour ago, MikeO said:

 folks with POTS (i don't have it) but will get postural orthostatic tachycardia short term (food is the stressor).

over the last couple of years i have made huge improvements one change at a time.      

What is it that you have, if not POTS? Something similar I take it?

That's great that you've made improvements! What changes did it for you?

[MikeO]

6 minutes ago, little_blue_jay said:

What is it that you have, if not POTS? Something similar I take it?

I was diagnosed with nOH 

[little_blue_jay]

Just now, MikeO said:

I was diagnosed with nOH 

Sorry, what is that?

[MikeO]

2 minutes ago, little_blue_jay said:

Sorry, what is that?

short explanation.

Neurogenic orthostatic hypotension (nOH) is a condition in which the autonomic system, which controls the automatic functions of the body, loses the ability to properly regulate blood pressure as one moves from sitting or lying down to standing, or when one changes positions quickly.