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Undiagnosed With Pots Yesterday


Mytwogirlsrox
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Ive been asking around lately if my symptoms are still consistent with a pots diagnosis. So yesterday at my appt with my cardiologist, he said I no longer fill the diagnosis criteria. Which I have been suspecting for a little while now, it's always nice to have something validated by an authority though. He did say; however, that I have mild OH instead. That the tachycardia I have (non-sustained, quick 10sec increase after rising), is just an overcompensation to the drop in BP. But my body compensates and returns to a normal-ish baseline HR. So during his poor-mans tilt I went from 69bpm to 95 in 15 seconds then back to 80-85 for 10 minutes.

So I guess I still have a bit of a wonky system (mild-OH). He summed up our appt with something Iike.. Don't worry... Your doing great... See you next year.

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Hey Mytwogirlsrox,

I am asking a few questions for a friend whose account isn't approved yet to post on the forum, so bear with me! hah!! She is in a similar situation where her HR increases a lot when she first stands but then levels out. She's not sure if she has POTS either.

She wanted to know the following...

How high does your HR go before it starts to drop?

And how fast does it drop after you stand?

Thanks so much! :) Cheers!

PS I'm happy to hear you are doing so well! yay!

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Dana--

I stand up it will go up to 95ish within 10-15 seconds then 5-10 seconds it levels off to about 80-85 and hovers around there. Might bounce between 75 and 90 too. Dr was pretty sure that this is NOT pots, but mild OH. He kept saying POTS is sustained And HR trends upward. Mild OH is usually transient upon standing. He was very serious that what is happening is a variance of normal. But he did say my "levels" tend to run low ... Meaning my hematocrit and iron levels are low, and he suspects that had a play in my POTS symptoms. Who knows.

I really hope your friend doesnt have POTS :)

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I have a question pertaining to myself. I had a ttt and my heart rate wemt from 85 to 145 after immediately being slightly positioned upright. Then my heart rate leveled off at about 115 after about 3/4 minutes. I don't know whether my case fits yours or a typical pots. my doctor doesnt know either.

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So Vandy says, "POTS is defined as a sustained heart rate increment of >30 beats/minute within 10 min of standing or head-up tilt" So I don't think they're saying it has to stay at 30bpm for 10 minutes. They're saying it has to hit 30bpm within 10 minutes of being tilted upright. The question is what do they mean by sustained? My heart rate didn't hit 108 until minute 8 and I was diagnosed with POTS. How would they know if it's sustained if they don't keep you tilted for longer than the 10 minutes? I know I meet the criteria through home testing, but they need to work out in-office testing and diagnostic criteria a little better I think.

ANYWAY.... I am so happy for you Mytwogirls. I hope it goes away completely, never comes back, and you get to enjoy your life and those two girls! :D

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I take it as a HR that hits 30bpm and stays there within 10 mins. For me, it shoots up with the positional change then trends downward-- as my dr explained it POTS would continue with an upward trend. Which was true for me months ago, my HR would creep up to over 120 quickly till I reached my max which was usually 125-130 and it woul hang around there until I would shift my weight around. Not sure if that's the case for all us postsy though.

I had similar questions, I wanted to know the EXACT definition .. But my Dr was very confident in his interpretation of the definition, and his clinical findings in me. I'm a pessimistic nature so I'm not sure I can just walk away from this very easy...

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Oh I was mistaken, I just pulled out my tilt test. I started at 72bpm resting, it was hovering around 100 at minutes 5-8 and then hit 108 at minute 9. By minute 10 it was coming down a little. I would have needed a longer to test to see what happened from there. The Dr. who did the test called it mild orthostatic intolerance and a POTS Doctor/researcher who looked at the results said it fulfilled the diagnostic criteria for POTS - and these results weren't even that dramatic. The test did not capture the extremes that happen in my everyday life. I like things to be technically correct and well defined, but really the most important thing is how you feel. If you feel sick/symptomatic when upright, you have orthostatic intolerance. And if you heart rate technically fits the criteria for POTS, but you feel groovy- well, I'd take that!

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OH and POTS are different variations of dysautonomia. There are some people that have been diagnosed with both forms, other drs you can't have both forms. A lot of confusion/inconsistency out there on diagnosis and classification. Regardless, treatment and symptoms are generally similar. Also, on any given day, your symptoms could be better or worse for lots of reasons. So the TTT could mean that you have improved, or not. Though if your HR came back down even once, that is always a good thing!

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Hmmm so you don't have pots anymore then? My heart rate shoots up and then tapers off. It's 85 to begin with then 145 immediately after being positioned upright and then leveled out at 115 and stayed there. thus definition and diagnostic criteria is so fuzzy!

That's why I wanted to consult my DR. My HR no stays between 80-85 even though I get a 20-30 Bpm "surge" in the first seconds of standing up. I was under the impression that since its not above 100 it's not tachycardia anymore.. and my Dr really thought it wasnt pots but mild Orthostatic hypotension (a dip in blood pressure upon standing) however on my original 45 min tilt my BP didn't change until I was given nitro @ 40mins and passed out. My BP still doesn't change when standing.. But I do get that grayish vision when standing up too fast or after I have lied down for a long time--maybe once a day. My BP has always been low 90/60, which he said puts you in. High risk of OH. So I guess for me couple the low BP, anemia, low RBC/ hematocrit yaddah and low blood volume most likely. I get orthostatic easy. He was really under the impression that pots is more than just numbers.. More symptoms.. OH is transient

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OH and POTS are different variations of dysautonomia. There are some people that have been diagnosed with both forms, other drs you can't have both forms. A lot of confusion/inconsistency out there on diagnosis and classification. Regardless, treatment and symptoms are generally similar. Also, on any given day, your symptoms could be better or worse for lots of reasons. So the TTT could mean that you have improved, or not. Though if your HR came back down even once, that is always a good thing!

Yes, that's what he was saying. Just keep up with the fluid and salt. I have NCS also (which luckily I have never fainted unless it was an high anxiety situation)

My primary reason for seeing him was to get his opinion on whether or not my pots is improving or this is something different. It's been 2-3 months now I've been self-checking to see what's going on, and it's pretty consistent ... But the hazy diagnosis criteria made me wonder what was really going on.

Regardless, un-diagnosing me or changing the diagnosis means a lot to me. Im just not sure if I'm ready to accept it, I still have this lingering suspicion that there is something insidious lurking within me.

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Oh I was mistaken, I just pulled out my tilt test. I started at 72bpm resting, it was hovering around 100 at minutes 5-8 and then hit 108 at minute 9. By minute 10 it was coming down a little. I would have needed a longer to test to see what happened from there. The Dr. who did the test called it mild orthostatic intolerance and a POTS Doctor/researcher who looked at the results said it fulfilled the diagnostic criteria for POTS - and these results weren't even that dramatic. The test did not capture the extremes that happen in my everyday life. I like things to be technically correct and well defined, but really the most important thing is how you feel. If you feel sick/symptomatic when upright, you have orthostatic intolerance. And if you heart rate technically fits the criteria for POTS, but you feel groovy- well, I'd take that!

Your symptomatic though right? I was wondering if I take my results to a POTs expert will he see pots? I feel like if you go looking for a zebra, you'll find a zebra. So I was hesitant at first to do so, I consulted a EP, 2 general cardiologists and then a pots expert and all but the EP who diagnosed me in the first place said no pots. I truly did have PoTs in feb 2012, and much of the year. My tilt I shot up to 140-150. At home I would walk around at 120-130, I do see why I received the diagnosis. My Hr was high.. Abnormally high. Anyways I'm bantering.. I keep trying to work through this...

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