Well Apparently I Don't Have Pots

[yuliya]

Well, apparently I don't have POTS, even if my tilt test result say I have it because my blood pressure does not fall (even if my pulse pressure is 20 on standing from 60). This is according to a neurologist I saw today that said him self that he doesn't know much about dysautonomia. I don't understand how doctors can make these outrageous claims when then know nothing on the subject. If you don't know send me to someone that does, don't tell me there is nothing wrong when you know nothing about a condition.

sorry about the rant. I am so tired of doctors and there treatment of people.

[MamaTrain]

When I finally had my TTT done my blood pressure did not fall either. It acutally spiked because I lean towards the hyper end of POTS. I have the drop in BP only in the morning for some reason. My HR went from 77 to 144 so that was proof enough to my cardiologist! Did you have the jump in HR?

KC

[yuliya]

My heart rate went from 88 to 154 during the tilt test. My bp is unprdictable lately it has a narrow pulse pressure, during the test it went up a bit. Usually when I do a poor mans test at home (when I'm bored mostly, or make sure its still wacky) I get 77 laying down and 117-160 when standing.

[Chaos]

POTS by definition is an increase of HR > 30 BPM, or over 120, within the first 10 minutes of standing, WITHOUT A SIGNIFICANT FALL IN BP!!! (If your BP falls, your HR is SUPPOSED to go up to compensate!)

I personally wouldn't waste my time seeing him again, but maybe you could print out an article that specifies the criteria for POTS, highlight it and mail it to him! Yeesh!

[yuliya]

yeah I'm pretty much done with him. No need to waste time on that.

[icesktr189]

Chaos

My bp drops very low abd my highest hr was 197. they said I still had pots?

[yuliya]

Chaos

My bp drops very low abd my highest hr was 197. they said I still had pots?

I think what she was saying is that not all categories have a drop in bp, not that a drop in bp means you don't have POTS

[Chaos]

Chaos

My bp drops very low abd my highest hr was 197. they said I still had pots?

POTS (from everything I've ever read) is defined by what happens to your HR in the first 10 minutes and it's my understanding that your BP should not have a significant change. You CAN however, have POTS and then also have NCS or NMH which is the BP dropping part. I have POTS, but also had my BP drop to 30's/20's on one TTT. Another one they couldn't find my BP for a couple minutes after it dropped. The third and fourth TTT, I also had big drops and very narrow pulse pressures.

It's a normal cardiac response for your HR to go up when your BP drops as that's one of the body's mechanisms for compensating the need for blood in your brain when your BP drops. What makes POTS "different" is that we have a high HR on standing that DOESN'T have a coincidental BP drop, or at least not a BP drop that is the cause of the high HR.

Clear as mud?? LOL

[MomtoGiuliana]

Yes, POTS is defined solely by change in HR. That's ridiculous. I hope you can see another doctor in your area.

[toddm1960]

Take a deep breath, exhale.....ahhhhhhh......now FIRE HIM and move on to someone that has a clue about dysautonomia. BP has NOTHING to due with POTS, it's sad to see the lack of knowledge and misinformation out there. I really like the new definition it's added "in "absance of orthostatic hypotension" Here's a clip from the 2011 Consensus Statement:

4. Postural tachycardia syndrome

4.1. Definition

The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension.

Does our definition on DINET reflect this new addition?