POTS symptoms once stable

[Nathalie]

Hey everyone

I was diagnosed with POTS a little over one year ago and have been on florinef ever since with really good results. It took about 3 months to stabilize on florinef and I went from fainting every time I stood up for more than a minute with a heart rate between 120-130 bpm, to a now normal heart rate with resting, walking, and activity.

That being said, I still feel like I suffer from a lot of things that only came about with the POTS, such as brain fog, chronic fatigue, constant and never ending trips to the bathroom to pee, exercise-intolerance, and an arrhythmia that comes and goes.

I'm wondering how many other people out there, who have stabilized on their medication (as in, do not have tachycardia anymore because their meds are working for them) are still experiencing other symptoms known to occur with POTS?

For the most part, the only stories I can find out there are from people who are still really suffering from their POTS...and so I'm curious to hear from those who are doing well but still seemingly have other symptoms known to go with POTS.

I guess I'd like to hear from others because 1. POTS is still relatively a mystery to most doctors, and I can't ask them..., 2. part of me wants to know if my doctor got the diagnosis right. Should I still be having any symptoms if my heart rate has simmered down?

Nathalie

[mehganb81]

I do not use medicine between flares.  I always have symptoms and have never returned to pre-pots but managagable. I have three kids (all born after POTS) and was very careful not to get deconditioned while pregnant.  I have had POTS for 15 years and I think have made lots of changes and adaptions to try to maintain as well as I can with a chronic illness.

[yogini]

Yes, it is very common to have other symptoms even though your heart rate and blood pressure are "normal".  Remember medicine like a beta blocker only controls HR and BP.  It doesn't help whatever's off in your body/ autonomic nervous system which is causing the POTS and all the other symptoms in the first place. I life a pretty normal life, but I get symptoms very often and very bad symptoms sometimes.  

[Nathalie]

Thanks for weighing in on that Yogini. That makes so much sense - exactly what I needed to be reminded of, actually. So thank you It's been frustrating to work with a specialist who feels everything comes down to "how my heart rate and blood pressure are". I keep having to remind this person that POTS does not affect your blood pressure - but it goes in one ear and out the other. So its been challenging trying to navigate this condition by myself.