BP Fluctuations - No HR fluctuations

[mymyjazz]

I have been diagnosed with Dysautonomia - likely POTS (so two cardiologists say), though I don't fit the exact diagnosis requirements for POTS.  

I notice that, while cardio-type exercise causes a large HR spike for me (and symptoms later that day/the next day) - I often feel horrible and my HR is stable.  My BP, however, will be fluctuating during those times.  My symptoms often include dizziness, brain fog, nausea, and sometimes leg pains at these times.  

Just wondering if this sounds like POTS, or possibly a different type of Dysautonomia?  And has anyone found a way to help stabilize this?   And how does BP fluctuate without a corresponding fluctuation in HR?  Curious.

Thank you!

[Pistol]

@mymyjazz - welcome to the forum! To answer your question: yes, your symptoms could be POTS. My BP and HR used to spike really high, but since I am on many cardiac meds my HR now says fairly stable, it is just the BP that fluctuates now. You asked if anyone has stabilized this - in my case it is with meds and rest periods. As soon as I can feel my BP change I have to sit or lie down until I feel better. Have you had a TTT? Your cardiologist should order that if he suspects POTS. Good luck - keep us posted!!!

[mymyjazz]

Thx!  I haven't done a TTT, but my cardiologist checked HR and BP laying down, sitting, standing - and noticed a large enough increase that it def. wasn't normal and very close to POTS numbers.  He doesn't believe in doing the TTT if he is confident of his diagnosis from symptoms and the few numbers he gets.  I def. have the symptoms.  I have never completely passed out, but come very close - especially in heat.  Failed stress tests but the echo-stress was normal (plus the zillion other cardiac tests I have had over past 4 years).  Soo dizzy constantly, with brain fog, chest pains, occasional shortness of breath, etc.  Salt does usually help, which is another reason why they are confident this is POTS (or a type of dysautonomia). 

 I just started Bystolic to see if it helps.  I have had daily life impact recently from constant nausea and increased fatigue.  So far I can't tell a difference.  I've been on it for ~2 weeks, and yesterday I had mostly very high BP.  No idea what caused that.   It was ~156/70 most of day, interspersed with low numbers.  HR stayed ~60.  Today I am back at my standard 95/61 BP most of day.   I also tried Florinef in the past, but was allergic (so sad, as I felt AMAZINGLY energetic).   

Hoping to level out and feel better soon.  Hot summer weather is not our friend!

[Pistol]

@mymyjazz - your cardio sounds like he knows what he is doing - you are lucky!! - I took Bystolic but it only helped for a little while then my BP and HR went back up. That happens sometimes with dysautonomia - the meds need to constantly be adjusted until you find the right one. Plus - often it is a combination of meds that helps best. Have you or your cardiologist considered SSRI? That helps many POTS patients. -- In the summer you might want to use a cooling-collar. It's this collar you put in the freezer and then put it around your neck - that really helps with preventing BP drops. You could also just put a stack of wet wash cloths in the freezer and use them as needed. -- I wish you well and hope all goes well.