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blood pressure, Combination POTS, dysautonomia, fluttering, heart rate, hyper POTS, hyperadrenergic POTS, iBP, iPad, NCS, NMH, poor man's tilt test, POTS, pulse, pulse narrowing, pulse pressure, records, tachycardia
I admit from the beginning of this post that pulse pressure monitoring is one of my pet topics, so there is a bit of personal bias here. Having said that, I firmly believe every Dysautonomia patient should be monitoring their pulse pressure in addition to heart rate and blood pressure.
What is Pulse Pressure?
Simply put, pulse pressure (pp) is the difference between the upper and lower blood pressure readings, in other words, subtract the diastolic bp from the systolic bp like this:
systolic-diastolic=pulse pressure
A 'good' pulse pressure should be about 40 mmHg. Less than 30 mmHg is not so hot. Under 20 mmHg is 'bad' and if you get under 10 mmHg, I seriously recommend a trip to the ER. Speaking of which, get emergency help ANYTIME you have concerns about changes in your vitals or symptoms.
* This is a good spot to throw in that old disclaimer that this post (and anything else in this blog) is NOT medical advice and should not be taken as such. This is simply a collection of the observations, opinions and experiences of one Dysautonomia sufferer.
Why Does Pulse Pressure Matter?
That is a complex question, but as pertains to Dysautonomis (POTS in particular), it is important to keep an eye on this oft ignored reading for several reasons. Pulse pressure drops, also called pulse pressure narrowing, is very frequent with POTS, particularly (in my observation) with hyperadrenergeric and/or combination POTS patients. Personally, I experience pp drops under 10 mmHg and have gone as low as 1 mmHg. Not a good thing!
Pulse pressure is sort of like the water pressure in your house. Good water pressure for a refreshing shower would be in that 40 mmHg arena, whereas something like 10 mmHg is closer to a drippy faucet. Pulse pressure has to do with the force of the blood flow within your body. There are more complete and complex medical explanations available…I suggest you do a search on “pulse pressure” to learn more about it in general.
One reason it is helpful to monitor your pp with every reading you do is that it helps you understand patterns and symptoms you experience. It can also be helpful to give this information to your doctor. I have made the personal observation that when my heart feels like it is beating hard (with force, as opposed to speed), I typically have a higher pp. Often when I am actually experiencing high tachycardia, my heartbeat feels thready and faint…it isn't pounding hard even though it is beating very, very fast.
These descriptive terms (hard, fast, pounding, racing, etc) are extremely subjective. I have had POTS all my life (milder in my childhood) but was completely unaware that I had tachycardia upon standing. I knew that I felt bad standing still for any length of time. But if you asked me if my heart was pounding, I would have said no. To me, pounding means beating hard, not fast. Unfortunately, that's the question we are often asked…and I never would have thought of my experience of tachycardia as pounding because my pulse pressure typically drops as my heart rate increases. That may be a slight drop into the 20-30 mmHg range, or it might be a major dip into the below 20 mmHg range or worse.
Monitoring your pp can help you understand your cycles, reactions, and give you a better handle on how to describe your symptoms to medical professionals. It also establishes patterns that can be extremely important diagnostically.
Withings BP cuff for iPad and iPhone
You can see a clear trend for me in this graph, pulled from the iBP app. I added the arrows; the darker arrows denote times when hr dropped and pp increased and the lighter arrow sets denote times when my hr was higher and my pp dropped.
During the times when my pulse pressure was increased, I felt like my heart was pounding very hard (not fast, but with great force). You'll see that in both instances in this example, my pulse pressure was higher than the 'norm' by close to 20 mmHg. During these times, my blood pressure and heart rate, at a glance, would not seem particularly bad at all.
This is a limited example, obviously. I have had pulse pressure drops with diastolic hypertension, as well. Most of the readings in this example where the pp is high show instances of generally low blood pressure readings and significant tachycardia.
I hope this demonstrates how tracking pulse pressure can be a great help in understanding your patterns and symptoms. I now know that when I am supine with a pounding heart, my pulse pressure will be higher. I have had higher pulse pressure along with tachycardia, but when this happens, it seems the tachycardia is usually fairly mild.
On the other hand, I've learned that when I can barely feel my heart beat, I definitely have a severe pulse pressure drop and almost always am having very severe tachycardia (the primary exception is instances where my heart rate was very high and then dropped fast, along with dropping pp, which always means a syncopal episode is looming fast if I don't get horizontal under my own steam before I pass out).
Another way that understanding these trends in your own vitals and symptoms is important is that it gives you ammunition, so to speak, in advocating for yourself that something IS going on when a medical professional is blowing you off. Having the recorded data to back you up also helps a lot.
I hope that more people will track this. I hope that more research will be aimed at pulse pressure in Dysautonomia. When I began this journey, I quickly found that there is very, very little data out there on pulse pressure in POTS. Not acceptable in my book. By tracking yours and sharing it with your doctors, you might help change that.
Research Study Invitation
If you are interested in participating AND have BOTH Dysautonomia AND variable pulse pressure (drops and/or spikes) you can request an add here:
http://www.facebook.com/groups/POTSPulsePressure/
The goal of the research group is focused on gathering and comparing our personal data (readings, symptoms, etc) in the hope of assembling enough compelling data to get a doctor/researcher interested in pursuing an actual scientific study on pulse pressure in POTS/Dysautonomia. The group will also offer support for those suffering from this particularly unpleasant and obnoxious phenomenon, for lack of a better word.
If you are not on Facebook and wish to contribute, please get in touch with me. No one's personal information will be shared outside the group. Any shared data will be anonymized and shared only with medical professionals who are interested in pursuing the study in a more official capacity.
More About Pulse Pressure…
I have written other posts touching on this topic, which can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there.
Posted with Blogsy
There is research that shows that the increased diastolic blood pressure which causes that decreased pulse pressure is the result of increased levels of angiotensin II in the blood. It causes a constant state of vasoconstriction in the central blood vessels and is furthered narrowed by the low blood volume. The end result is a low cardiac output and decreased cerebral perfusion. A bit technical, but maybe information some people can use when talking to their doctors about this issue.
Thank you, Emily…that is excellent, concise information…I appreciate your sharing it here:)
Shae
Thankyou, that is all very interesting and will see if any trends which will help in better managing POTS better. I too notice pulse pressure drop eg. Bp 90/70, interesting and interesting too about angiotensin II and vasoconstriction. Thanks for your help!
Can I please have the name or title of the study? I read pubmed all the time due to my many illnesses.Thank you, Francesca
I am not sure which study she is referring to, but a quick search lead to other interesting things about angiotensin and diastolic heart failure:
https://www.google.com/search?hl=en&client=safari&q=angiotensin+diastolic&oq=angiotensin+diastolic&gs_l=mobile-gws-serp.3…3590.12067.0.13135.18.14.4.0.0.0.115.1310.10j4.14.0.les%3B..0.0…1ac.1.5.mobile-gws-serp.9wc6OUHkve0
Shae,
Since reading this, I have gone back and figured in the PP’s, the lowest has been 31 and thats when I noticed that I feel very weak throughout my body like I have the flu. Is that how you feel?
Yes, that is one of the things I go through with it. The lower it drops, the worse I feel. I get shaky and disoriented and lightheaded…lots of pre-syncope stuff…when it really tanks. If I remain upright in that condition, I will pass out. I’ve learned that when I do feel the onset of the pp drop, I need to stop and lay down. I wouldn’t know when I need to do that if I had not begun tracking this and connecting the dots.
Monitoring your vitals so closely doesn’t cause you anxiety?
It does for me, a lot. So I try not to unless I feel awful.
It started the first time I was on midodrine (like 5 years ago) my dr constiany monitored & analyzed it when it got high. He stopped the midodrine but the anxiety over bp lives on. Now my new dr put me on midodrine again & it’s a battle. I dont check it everyday. I’ve been on it for a few months & it’s creeping up. I’m trying not to worry
No, it actually usually reassures me. Sometimes it also ticks me off, though…and I get frustrated with the whole THING. I take long breaks from doing regular readings now, but I am glad I was really diligent about it for several months to establish a baseline and learn my trends. I don’t think we have to keep doing it that diligently, necessarily, but it is really important in the beginning (after dx or while in process of being dx’d) to do it for at least a few months. After that, it can be reduced to times when feeling bad or when a new symptom or pattern emerges (IMHO).
I hope that helps some. I try not to worry much. Adrenaline surges are awful enough without worry
I put a BP app on my android today and was pleased to find that it calculates Pulse Pressure
The lowest mine has been today is 31. The highest has been 36. I’m more than willing to be in your informal study. Just let me know what you need 
Oh, the app I’m using is from this website: http://www.bloodpressuredb.com/programm/o.prg?pos=1&lan=en&uF=login/form
Take care,
SillySickChick
Yes! better living thru data analysis. And yes! want to participate. (And have a fair bit of data for past year, though Sx records suffer when it’s bad as I become incoherent and uncoordinated.)
I recommend the android diabetes app OnTrack as best I have found for tracking vitals. Data exportable in csv and other formats.
Since I began serious data tracking, I have found the hollow-chest feeling and neck-side pain happen when pp is very low, while the pounding pulse (visible) and the flashing-in-time-with-pulse visual effect and the chest pressure come when the pp is very high (> 50). Well, the chest pressure kicks in earlier.
I have measured pp as low as 1, and walking-around pp of … er, definitely as low as 8.
I have wanted to do proper analysis but haven’t mustered cognitive function for the database deign.
Oh, one of the things I like about OnTrack is, by adding “custom” categories (to the item they intended to record “fasting, morning” or “after breakfast” or …), I am able to track position and activity (supine, semirecumbent, seated, standing …) as a separate data point for each reading.
Ginny, I love you!
If you are on Facebook, we can add you to our little study group. Between us, we hope to muster the cognitive ability to come up with a protocol for analysis sufficient to interest researchers to seriously delve in this direction. Btw, my experience is the same as yours, regarding the symptoms…and the others have said similar things. No way this is a fluke. We are onto something here.
I don’t have a droid, so thanks for the suggestion on a good app for people who do…that sounds perfect!
I am SO GLAD you found your way here:)
Shae
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Thanks for all this work and I look forward to reading your other posts on this. But I’m sorry – I don’t get it. Other than a warning of syncope, what is the point of tracking this?
How can this be treated? How does knowing this help me treat my hyper A POTS? Why should my cardiologist know about this if he can’t do anything about it and it is not life threatening?
I know by my body reactions when I am about to go down; I can’t stop for 10 secs to take my pulse pressure.
Could you explain further why knowing our pulse pressure, without being able to fix it, would improve our health? Or is it fixable in us POTSies?
Great website – great work!
Thanks for your kind words:)
One big reason to track it is to better understand your symptom patterns and triggers, and to be able to stop the progression of an ‘attack’ sooner via this awareness.
Another crucial reason is that studies seriously need to be done on this. It is my personal belief that this is a key area of study in the battle for better treatment. I am running a small unofficial study group in an effort to compile enough compelling data in hopes of getting the real researchers interested in pursuining this.
Thanks for posting about this. There are people like myself scouring the web for more information on this. Background for me is my wife likely has Hypertrophic Cardiomyopathy along with Hyperadrenergic POTS with Mast Cell Activation. She goes through much of what you write about, but I’m searching for the cause of constantly eroding (narrowing) pulse pressure over time. I *think* it’s the cardiomyopathy that gives a downward trend laid over the POTS caused symptoms. My wife sees a good cardiologist at the Minneapolis Heart Institute and spent “the week” at Mayo / Rochester to earn the Hyperadrenergic POTS “badge”. I figured out the mast cell activation (histamine reaction causing shock like low blood pressures, which has been helped by H1 and H2 blockers in your local drug store) Contact me if any of this is interesting and you wish to discuss. THANKS!
Thanks so much for sharing. I know my last cell issues tend to make this worse, so what you said makes sense. Please feel free to keep in touch (zebragirrrrrl AT gmail –that’s with 5 r’s).
One thing a narrow pulse pressure can tell you is fluid volume status, it is used in critical care to determine things like hypovolemic shock and cerebral blood flow.The more narrow the less the fluid volume and decrease in blood to the brain. I have been dealing with POTS probably all my adult life, but only found a diagnosis about two years ago. The midodrine, increased salt and water helps, but it does not keep away the symptoms. Sometimes they come back overwhelmingly. I have noticed narrowing pulse pressure when this happens usually below 20. Also noticed that when this narrowing occurs my urine also dilutes to the color of water ( even first morning one) so forcing even more salt and fluid sort of helps, but until I start having even a small amount of color in my urine again I can hardly walk around.
Yes, this makes total sense and jives with my own experiences, symptomatically. I am so glad you shared! I can’t take midodrine, but am on extra salt and 2 liters of pedialyte per day, in addition to my ‘regular’ hydration. But I’ve noticed the same thing with dilute urine and when it hits me hard, I’m in bed for a while, chugging my pedialyte. Mine so often goes below ten. The pedialyte has helped that some, but nothing stops the cycle.
@Shae: “Mine so often goes below ten.”
How do you measure your blood pressures when they are so narrow? Even the nurses, nurse practitioners and cardiologist has a hard time getting a BP at times now using a stethoscope and cuff.. We have a “higher end” Omron BP machine at home and it just throws errors when my wife is tachy and has a pulse pressure less than about 12-15 mm Hg. It tends to fail 100% of the time at or below 12. We can tell this by charting her BP’s over time and you can see the cut-off of readings at that level. Any suggestions on getting BP readings narrower than 12-15 would be very helpful.
Thanks.
Great question…I am just about to post an entire blog entry to answer this. It is called ‘To Err is Expected’ and I hope it is helpful
Okay, the post attempting to answer your question is now published: ‘To Err is Expected’ is the title, published 10 Mar 13. I hope it helps some
Learned something new. I’ve always been curious why my systolic and diastolic always seemed close to each other, making it appear that my diastolic was high but my systolic was fine. Doctors never really paid much attention to my high diastolic so long as my systolic was normal. Turns out my PP is low.
This seems to be a largely ignored area of medicine, as best as I can tell. I have a group of over 40 people in an unofficial ‘study’ who ALL have this issue. We are hoping to gather enough compelling data to inspire a thorough medical study.
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We would love to valve you in the group. . A meddled up ANS will certainly do that sort of thing to us. Most unpleasant!
First time on your blog and learned something new! I am a PAF gal and after reading this I went back to look at some of my readings to see my PP. I’ve have not heard any one mention it before. I look forward to reading more.
I’m glad it was interesting. If you don’t mind, I’d be curious to see what you find as far as any pulse pressure fluctuations … any patterns you no notice and correlating symptoms.
I hope the info helps you