POTS AND vasodepressor syncope/oh?

[Soph1802]

Hi there

I’m new to the forum and just getting my head around my diagnosis. My TTT showed my HR does increase over 30bpm and often over 120bpm on standing, and I have severe blood pooling and all the daily symptoms of POTS. I definitely relate to having the condition, however, once I stand up after a few mins while my HR keeps increasing my BP slowly drops until I pass out - this happened at 8 mins on the TTT but can be sooner on a morning etc. I never pass out during the day in normal life though, unless I stand perfectly still and even then I’d know when it was coming and sit down. 
 

My dr said that the bp drop means it’s not necessarily POTS - but rather more general dysautonomia  but it presents like POTS. Does anyone else have this? Surely I just have both POTS and another kind of OI related to blood pooling? 
 

I know there are other posts on this but I’m just trying to understand. In a weird way, I want it to be POTS so I have an answer and something to work with. It seems to me that it is basically pots. 
 

thanks

 

[Pistol]

@Soph1802 - your doc is right, POTS is diagnosed by an increase in HR sustained WITHOUT a significant drop in BP. However - I have both HPOTS and NCS ( neuro-cardiogenic syncope ), the latter causing syncope by suddenly dropping both HR and BP.  In normal people the HR and BP adjust upon standing within one minute and normally do not cause symptoms except for the occasional dizzy spell upon standing up too fast. Either way - you definitely suffer from dysautonomia and treatment for POTS and NCS are similar. Most common treatments for POTS with pooling and LOW BP are beta blockers, Midodrine or Florinef, SSRI/SNRI ... there are more but these are the ones most commonly mentioned. Has your doc prescribed any of these meds? Florinef and Midodrine especially work for people with drops in BP, so they might very well help you with some of your symptoms. For blood pooling compression hose of 30-40 pressure is recommended and can help greatly for the pooling and BP drops, as well do salt and fluid loading. 

You might find this article helpful:  https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r10

Don't worry - I used to faint all of the time from NCS, and took seizures from HPOTS. Today these episodes are rare for me, thank god. There is a lot of reason to be hopeful!!!!!

[Soph1802]

@Pistol gosh that sounds awful! Glad to hear things have improved for you. I have improved significantly in many ways in the short time (1 year) that I’ve had the condition so I am hopeful, and I am generally mobile and able to do most things! I just like to have answers and it is so frustrating not being 100% about what is going on - especially when my tests seems to show that I have both conditions but docs don’t think this is possible!! To answer your question re treatment - I’m trying without meds for as long as I can because it was a reaction to beta blockers and tricyclics antidepressants that caused it. This is why I’m hopeful over time it can improve/go away as it seems to be a withdrawal reaction, just incredible prolonged. 

[Pistol]

@Soph1802 - yes, it is totally possible b/c I have both diagnoses! My first TTT simply showed NCS but it actually showed POTS first then NCS, the cardiologist was not aware of POTS at that time ( 2009 ). My HR went up, stayed up and then plummeted, along with my HR. Later I was diagnosed with HPOTS by my autonomic specialist, he checked neurotransmitter levels and the Adrenaline was very elevated upon standing. In your case it sounds like the culprit are the blood vessels that are not constricting properly, hence the drop in BP in response. The previously mentioned meds all work for that. 

[Soph1802]

@Pistolits so lovely to hear others with similar stories, thank you! Yes I think my pots is definitely because of an exaggerated response to inappropriate vasodilation, so I don’t think it’s hyperpots (I don’t have the tremors, sweating or anything like that, and never high BP). I do get v short (seconds) bursts of high BP when I change position sometimes but I think this is over compensatory and because my Heart is beating so hard and fast to maintain pressure in the first place - so then if I sit down, for a second or two it is too much for the new position until it regulates itself. Anyway - it sounds like we have similar stories. My BP drops slowly over time as my heart struggles to maintain it rather than suddenly, and my HR doesn’t drop. But it’s definitely a mixture of pots and OH. Thanks for your replies! 

[yogini]

On 4/15/2021 at 5:35 AM, Pistol said:

@Soph1802 - your doc is right, POTS is diagnosed by an increase in HR sustained WITHOUT a significant drop in BP. However - I have both HPOTS and NCS ( neuro-cardiogenic syncope ), the latter causing syncope by suddenly dropping both HR and BP.  In normal people the HR and BP adjust upon standing within one minute and normally do not cause symptoms except for the occasional dizzy spell upon standing up too fast. Either way - you definitely suffer from dysautonomia and treatment for POTS and NCS are similar. Most common treatments for POTS with pooling and LOW BP are beta blockers, Midodrine or Florinef, SSRI/SNRI ... there are more but these are the ones most commonly mentioned. Has your doc prescribed any of these meds? Florinef and Midodrine especially work for people with drops in BP, so they might very well help you with some of your symptoms. For blood pooling compression hose of 30-40 pressure is recommended and can help greatly for the pooling and BP drops, as well do salt and fluid loading. 

You might find this article helpful:  https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r10

Don't worry - I used to faint all of the time from NCS, and took seizures from HPOTS. Today these episodes are rare for me, thank god. There is a lot of reason to be hopeful!!!!!

My understanding is POTS is a sustained increase in HR, whether or not your BP changes.  It's quite common for those of us with POTS to have a decrease in BP after standing.   In other words, many of us are also orthostatic, diagnosed with both POTS and OH or NMH.  I have both diagnoses. On some days my HR can be normal and my BP low.  But most of the time I have higher than avg HR and low to normal BP.  

There are different views on whether the actual classification matters much, as there is a large overlap in treatments.  Some doctors refuse to sat POTS or OH and give a general diagnosis of dysautonomia.  Others don't prescribe beta blockers for OH, but honestly I took (and needed) beta blockers for years, combined with medications that stabilized my BP.  That is a pretty standard combo but it's just a matter of trial and error and what works for your body.

Everyone has a different mechanism for dysautonomia but in my case I am fairly certain my BP drops due to pooling when I stand.  In order to maintain BP my  then HR increases.   Of course there are also some versions of POTS with high BP, so it is all very confusing! 

[Pistol]

@yogini @Soph1802 here is the current diagnostic criteria for POTS, from this article POTS: An overview - POTS - Dysautonomia Information Network (DINET)

"The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012)  (Arnold, Ng, Raj, 2018)"

You CAN have OH in addition to POTS though, like in your case, Yogini. The reason why it is important to consider the BP in a POTS diagnosis is that an increase in HR in response to a drop in BP is NORMAL. In POTS the increase in HR without a significant drop in BP is a significant sign in determining the diagnosis. 

1 hour ago, yogini said:

There are different views on whether the actual classification matters much, as there is a large overlap in treatments. 

I agree, there is a lot of overlap in treatments in all dysautonomias. However - the mechanism of the disorder determines the treatment. For example: if the dysfunction stems from excessive vasodilation the treatment would point to vasoconstrictors, such as Midodrine or Florinef. Betablockers are commonly prescribed for the tachycardia, but depending on any alpha or beta blocker sensitivities may or may not be effective. If the dysfunction is caused by excessive sympathetic activation the symptoms would cause vasoconstriction, in which case the above treatments would make symptoms worse. In these cases vasodilators like calcium channel blockers would be more effective. 

Note that in the hyperadrenergic form of POTS there commonly is an INCREASE in BP along with the tachycardia.