Pots Or What?

[valliali]

does anyone here have pots, or has been diagnosed with pots, who doesn't have the heart rate increase upon standing very often? like, you have a ton of other symptoms, but the tachycardia with the postural change is probably one of the most infrequent??

i was diagnosed with POTS off of a tilt table test because i had an unusual episode of sinus tachycardia after the whole test. i did not have a change in heart rate or blood pressure during the upright tilt, however.

i am questioning the whole diagnosis, and before shelling out a ton of money to visit the mayo or the likes, i am wondering if anyone else has also been confirmed as having pots but has a similar situation?

[Guest tearose]

POTS symptoms will change based upon several variables. Your type of POTS and the activity you are doing will change how your heart needs to respond to get blood to vital places. You may also be finally recovering? Some people do.

For a short while, after I remove my compression garments I manage to "hold" some better levels of blood pressure and then, gradually, my blood pressure will drop again. It is as though it takes time for the nerve fibers to "loose" the grip or maybe it is that the fluid just makes its way back to legs and abdomen. Anyway, there are variables.

Keep a record and note what is happening. There are some who report having recovered!!!

best regards,

tearose

[MomtoGiuliana]

If your tachycardia isn't generally related to postural changes, I can understand your questioning of the diagnosis, since that is the definition of POTS. Have you been evaluated by an electrophysiologist?

[Ernie]

Hi,

POTS is an increase of at least 30 bpm in 10 or less minutes.

I have all the symptoms of POTS and all my 8 TTTs were positive in less than 15 seconds for POTS and less than 15 minutes for NCS.

[valliali]

thanks guys.

no, i don't think i am recovering, because i have never had a period of increase in heart rate upon standing. in fact, the dizziness upon standing occurred like six months after i started feeling unwell. then i noticed the heart rate upon standing like eight months after i had become sick. like i said, it rarely happens in comparison to all the other symptoms i have, and that's how it's always been. i'll have like a day or two a week where i will feel dizzy and jittery upon standing, and can tell my heart is racing, but this feeling passes in like 30 seconds. from what i understand about pots, the heart will continue to be rapid for awhile after standing. the feelings i get during the postural change very quickly subside. the postural change symptoms are honestly the least of my symptoms!!

which is strange because i have intense heart problems. my heart is rapid all the time, and increases very very quickly with little exercise. just not really during the postural change.

i am taking beta blockers - could this be why?? the beta blockers don't seem to slow my heart rate down much, and they don't prevent my heart from speeding up really quickly upon minimal exertion, so i'm not sure why they would nearly completely eliminate a change in heart rate during a postural change.

i am just not sure, and never have been sure, why i was diagnosed with pots. i was diagnosed with dysautonomia because of my rapid heart rates and because of the very strange sinus tachycardia response i had during the tilt table test after i was lowered. after they administered the medication, stopped it, and lowered me on the table and told me the test was done and negative, my heart shot from about 80bpm to 170.

i am feeling more hopeless, even two years into all this, than i did when i first got sick and had no idea what was going on. i feel like i fit into NO diagnosis at all. i have a dysautonomia, it seems, based on all my heart issues, gastointestinal and anxiety issues, but i don't fit into any of the types of dysautonomias!

ah!

[Sunfish]

the fact that you're on beta blockers - even if a small dose that doesn't seem to have a huge effect on your HR - could be a HUGE factor in the fact that your HR doesn't elevate with postural changes.

[valliali]

i'm just having issue with the fact that my heart rate has never really increased with postural changes, even before beta blockers. it didn't increase all but 10bpm on my tilt table! why then, was i diagnosed with pots? i am just wondering if the heart rate increase during standing is essential for a pots diagnosis?

[MomtoGiuliana]

The DEFINITION of POTS is an increase of at least 30 bpm on standing. While this may not happen to all of us all the time, this observation during a TTT is what establishes POTS--as far as I know.

[ajw4790]

Hi,

I wanted to chime in... if I understand everything right you are trying to figure out if your POTS diagnosis is accurate due to the lack of noticible HR increases with postural changes.

For one thing, that TTT was just a snapshot of one time, and at a different time/circumstances you MAY see a different response. One important thing to remember is that some people do not get the increase in HR until 10 minutes or so after standing. so, when your TTT ended you may have just reached your threshold and started having symptoms. Or maybe you body fought off the symptoms, but once lowered it could no longer accomodate the changes and you saw a HR increase. This MAY point more towards Orthostatic Intolerance, but you still could fit the definition of POTS.

As for right now, and not noticing the HR increases very frequently... I too, do not notice them frequently on a day to day basis, either because the meds are doing their job, or that I have gotten used to the feeling and don't notice the difference anymore. It is hard to say that you don't have any HR increases with standing or less you are CONSTANTLY observing it through a Polar monitor etc. And also taking it into account that it may not be right when you stand up, but a delayed reaction to standing.

Also, for many of us the BB's purpose is to decrease the increased HR reaction upon standing. It does this by regulating the balance of HR and BP etc. to try to minimize the jumps in HR with position change. So, with BB's it is not suprising that you do not see sharp increases in HR on a daily basis.

Hope that helps!

[jump]

Postural heart rate changes and tachycardia can be caused by all kinds of things, not just POTS. Pain can make a person's heart race, and anxiety, and other illnesses. Basically any bodily stress can cause a brief heart racing. My understanding is that POTS is a diagnosis that comes only when all other likely reasons for a racing heart have been ruled out.

Before meds, my hr didn't necessarily go sky-high every single time I stood up in the beginning. For about a year it would speed up some, but not to the high levels that it later did. And sometimes in the afternoon I wouldn't noticed it at all. (Later my symptoms became more intense and more regular). But it sounds like what you're describing is different. Even when my tachycardia wasn't every single day, it was still my biggest "problem symptom." What you describe almost sounds like your heart could be occasionally racing from other things -- the bodily stressors of your other symptoms, for example. Especially if you have other heart conditions, an occasional tachycardia could easily be a secondary symptom of another heart condition and not POTS.

I can totally understand your frustration!! These illnesses are so difficult to pin down and deal with. However, if you never really had a consistent problem with your hr changing upon standing up, then I think you might be smart to talk to your doctor about looking for a different diagnosis. Even if you haven't found the right ANS disorder to describe what you're dealing with, you don't want to risk being treated for something you don't really struggle with (like tachycardia) and have doctors not be focusing on what IS bothering you the most.

[valliali]

thank you all very much for your insight. this is a frustrating situation for me because i feel like the requests i make to pursue further testing are brushed off because i "have pots." but i don't really understand why i "have pots" when i have never documented a heart rate increase upon standing. this isn't to say it never happens. i do have memories of it happening, but sooo occasionally compared to my other much more distressing symptoms. i also have a few memories of everything turning black when i stood up and feeling really dizzy, like my blood pressure was dropping. again though, so infrequent. these are like the last of the long list of symptoms i would report to my doctor. i have an at-home blood pressure/heart rate monitor, and i have very rarely caught a heart rate increase upon standing.

so yes, perhaps this is pots and for some reason the pots is just affecting my other symptoms much more than the postural change.

however, i do have doubts, and i have had hardly any testing. i don't understand why i was immediately diagnosed with pots off of a tilt table test, when i didn't have an increase in heart rate or drop in blood pressure at all. i was upright for 20 minutes, and my heart rate didn't change at all, with or without the medication.

in fact, my heart rate definitely doesn't increase the longer i stand. when i do experience some dizziness or faster heart rate upon standing, it very quickly dissipates. like in 30 seconds. it has NEVER gotten faster, only slower.

i am concerned something else is causing autonomic nervous system dysfunction, which i definitely have an element of, but that i am being written off because pots is the end-all be-all diagnosis. it seems there are plenty of diseases/disorders that can cause dysautonomia aside from pots and i don't believe i am really being tested for any of them.

anyways, thank you all for your feedback. i am going to see a pots specialist in december and perhaps she will be able to tell me if i sound like a typical pots patient. i do worry though that i am going to go down a very expensive pots path, when something else has been going on all along!

[flop]

I can understand your frustration and concern that you may have the wrong lable attached to you and the POTS may not be your eventual diagnosis. Do you have copies of all your test results, especially the tilt table test? I think that it is very important that you have those for the POTS specialist to see when you meet her, she may be able to agree or disagree with the interpretation of your existing tests. She may also want to do some testing of her own. If another tilt table test is recommended you may well need to stop your beta-blockers first, you should discuss this with the doctor. The good thing about seeing a POTS specialist is that they mostly are ANS experts so even if POTS is not your problem she may well be the right doctor to figure out what IS causing your symptoms and help you find the right treatment.

Good luck and let us know how you get on!

Flop