Measuring Hr And Bp?

[firewatcher]

Hi Y'all,

I have had two orthostatic BP measurements at my Doc's office (in an effort to confirm my own 10 pages of BP logs) and both times they were done differently. For Vanderbilt, they want supine (lying down), then upright (standing) after one minute and then upright after three minutes. The nurses have had several problems with this: they can't find my pulse when I stand (unless they go for the neck or stethascope, or unless my finger is in the pulse ox meter) and the pulse won't stabilize for their machine to read, the automatic cuffs just give up during the upright measurements and by the time they go for the manual cuffs the time lapse is too long.

To diagnose POTS do they want the "surge" heart rate that occurs on standing, or the "stabilized" rate at one minute?

If the HR won't become regular, do they want the range or an average?

This last one was uncomfortable, I was freezing while I was laying there, but once I was standing (trying not to sway) I started to sweat as my heart rate climbed and they were looking for a cuff that fit.

I'd like to have something "official" to give the nurses and Doctor to follow, how were things done for you all?

Jennifer

[Tammy]

For me, it has depended on the nurse taking the readings. I've had nurses who will try over and over to get a reading they feel is within 'normal' limits, as they look at me really confused when they try at first and this can happen when I'm just sitting, not having changed positions. When I've had my orthostatics tested, they have me lay down - test, sit up for a minute - test, and then standing for 3 minutes - and test. However, mine will get worse after 10 minutes of standing so this doesn't always show an inaccuracy. When I first wake up, this is usually when my heart rate goes from 67 to 117 just from standing up, but my bp will raise and then become narrow after 10 minutes or so, i.e., 73/89 - so not sure how this all falls into POTS.

So to answer your question, I believe they want to see the surge of over 30 beat per minute from a laying down to standing position. Some peoples blood pressure will fall also, and this is another thing they are looking for.

- Tammy

[Ernie]

HI,

The only way they can have my standing BP is through in intra arterial line.

[firewatcher]

Please guys, I need to know which numbers they are looking at...Anybody?

[pat57]

My Dx of NCS was from TTT. I had a DX of orthostatic hypotension, which is 20 point drop immediately upon standing.

I don't have POTS, so.....don't know.... the potsplace definition is, "the hallmark of POTS is an excessive heart rate increment upon standing"

[jump]

I think it does tend to vary by office and I'm not sure there is much you can do about that, short of writing up a protocol for yourself.

Diagnostically speaking, it's an increase of 30 bpm or more OR a hr excessive of 120 anywhere from immediately upon standing (the surge) or within ten minutes of standing. So it shouldn't matter if it's not steady or if it's changing a lot so long as it's more than a 30-bpm change.

I had a long history of orthostasis BEFORE developing POTS, and the protocol I was always taught was: sit or lie down for five minutes, take pulse first and then bp. Then stand for five minutes, then take pulse and bp again. If any of the numbers (pulse, systolic or diastolic) changes by 30 then one is considered to be in a state of orthostasis or orthostatic (either orthostatic bp or hr, or both, depending on which numbers changed). But, I only learned this from my own various doctors, I'm not by any means an expert, so I don't know if that's 100% correct. That's just what I was always told.

It almost sounds like your nurses are confusing POTS with being orthostatic. really, your BP and HR logs should be enough for diagnosis, or a TTT. They shouldn't have to have a clear reading in the actual doctor's office and furthermore, I would think a weird reading (like never being able to find your pulse) would be indicative of diagnosis and cause them to consider further testing (like a TTT). Have they told you what they're hoping to achieve with the in-office readings?

good luck, sounds frustrating!

jump

[ajw4790]

Hi,

I am unclear to where/why this question comes in? For dr? Diagnosis? To determine need for further testing? I think this is another one of those things that there is not just one protocol and is dependent on those performing it. I am not sure why all of these measurements are so important? If you have some "proof" that on a daily basis you have the same issues and that it is not just a "fluke" in the dr office, that should be enough to trigger the drs. to perform further testing? The "poor mans tilt table" that you are describing (measuring HR/BP laying, sitting, standing) also is just a test to demonstrate to drs. that you do not have a "normal" response to positional changes. They are often not able to diagnose much from purely this test, and therefore they just normally do a quick and dirty version (i.e. not to a specific protocol, but enough to get an idea of what is going on). With this quick test coupled with your symptoms and history is normally where drs. then go to recommending a TTT. Some may go ahead with poor mans TTT and history and give you a diagnosis and start treatment, but often they want to make sure with TTT so that you are not on unnecessary meds.

I agree with others if there is a problem getting an accurate pulse or BP measurement with a change in position, this is indicitive that there is something going on abnormal and warrants further testing.

I would suggest finding a dr familiar with POTS/dysautonomia, including a cardiologist. As well as if you are trying to confirm a diagnosis a TTT and holter monitor.

What do you mean what numbers are they looking at? HR and BP. If you mean after what time periods, immediately upon standing or 3-5 minutes? Then, I guess to get the ENTIRE picture one could take it supine after resting for 3-5 minutes, then sitting (immediately), and then standing both immediately (to see if orthostatic as soon as stand) and then 3-5 minutes after to see how body adjusts, then 10 minutes after, then you could probably continue to 20-30 min. like the TTT, but is not really necessary. This test is supposed to give just an overall look, and not exact numbers. Really this test is not of a whole lot of use besides showing that there are or are not abnormal changes with position change. There is not to my knowledge one protocol that is supposed to be used. It is a stepping stone to indicate the need for other tests. As for diagnostic criteria, also see what jump posted, what matters is the 30 bpm change from starting to sometime standing.

For myself I had them check this for me once or twice, but it was always not to a specific protocol, and was more like lay down (check pulse), sit (HR), stand (HR). They were just looking for whether or not it was a normal response. For me the TTT etc. was where the diagnosis and treatment was based.

Hope that helps!

[firewatcher]

Hi again,

I guess I have not been as clear as I thought, sorry. THe doctor's office is attempting to confirm "officially" the readings that I have gotten at home before I get to Vandebilt in November ( you know how many of us are melodramatic .) So far, they are completely missing the "surge" in heart rate by taking blood pressure and HR too late after the stand. I am getting 30-54+ bpm increases at the immediately to one minute standing point. They are attempting to wait until my HR stabilizes to take the readings, sometimes a long time, but it won't settle into a regular rhythm if I stand still, it surges. I've had a holter monitor that showed a 52 bpm increase with supine bradycardia and all day tachy. When the nurse sees a HR of 111 on the pulse ox meter, she won't call it that high, because the HR would vary between 98-111, so she averaged it. I know they are trying to be conservative, but none of my Doctors really understand POTS at all, other than the articles I keep bringing them. I downloaded Vanderbilt's protocol again to give them next time so that they won't argue with me on that. The latest nurse actually suggested that I was "just dehydrated" (still don't have a dx on Diabetes Insipidus yet either.) I just want to be accurate, everyone is trying too hard to make me "normal," I'd love to be normal.

Jennifer

[pat57]

http://www.anapsid.org/aboutmk/xenoest/oi.html

that might help, about half way down you will find normal results then abnormalities in ANS function -

here is his POTS reference

4. Orthostatic postural tachycardia:

An increase in heart rate of 28 beats per minute (bpm) OR a pulse of more than 110-120 bpm. "A healthy person's pulse will not change even if they stand up for an hour. You need a steady pulse to circulate the blood."

[lorrie]

firewatcher, I don't think anyone here will be able to give you exact numbers the doctors will be looking for. Everyone with POTS has different numbers and everyone has been tested differently depending on their doctor.

I just wanted to chime in here that if you don't get the answers you need at Vanderbilt, you should try Dr. Zia in Bowling Green, KY. He isn't that far from Nashville and has a much shorter wait list. He is very knowledgeable about POTS.

I have ended up finding a wonderful network of doctors in Bowling Green and had struggled with all this for over 10 years until I found them. Anyone in traveling range of Vanderbilt should definitely consider Bowling Green...they have some awesome doctors.

[firewatcher]

Thanks!

I had read that article a while ago, but could not seem to find it again. That could have had my name inserted all through it; my pulse pressure was routinely less than 18 mm/hg before meds. The first time anyone mentioned the lack of a pulse thing was at a "world class" neurologist's office. He was doing a quick orthostatic and kept groping my wrist in different places before he sheepishly noted that he could not find my pulse. I was there being evaluated for the tremor, so it never went further than a "well you don't have Parkinson's." I am waiting for my time at Vanderbilt like a kid waits for Christmas. I keep dreading/looking forward to it, praying that they will know what is going on. This morning I had a sustained 43 bpm increase in HR from supine to standing till the Inderal kicked in. I keep thinking that Dr. Biaggioni at Vandy will do what so many other docs have done: "there is nothing wrong with you, go home and relax." Or worse, tell me that it's not POTS, but an endocrinological thing that no one can figure out.

I appreciate all the positive support on this forum, it helps so much to know that there are others out here with the same symptoms and positive treatments!

Jennifer

[pat57]

since you say "but an endocrinological thing that no one can figure out." you might benefit from checking out those two links.

good luck!

http://en.wikipedia.org/wiki/Neuroimmune_System

http://en.wikipedia.org/wiki/Neuroendocrinology