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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.

iBP app

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.

Blood Pressure Chart – Normal Blood Pressure Range.

Interesting information on blood pressure; good basic background reading with charts for the newly diagnosed POTSie/Dusautonomia patient.

Heartbeat

About Pulse Pressure…

The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there. The bare basics that apply to all posts on this topic:

THE FORMULA: Systolic – Diastolic = Pulse Pressure (PP)

When my PP spikes high, my heart rate usually is within a normal range. Regardless of heart rate, a high PP will cause my heart to feel like it is pounding very hard, with great force (not to be confused with speed). The harder it beats, the higher my PP has spiked. When it is super high, say over 60, I can feel it sort of reverberating throughout my body. It is very uncomfortable, and I often experience great discomfort in the chest during these episodes. It often happens supine.

HIGH or WIDE PULSE PRESSURE = LOWER DIASTOLIC = POUNDING HEARTBEAT

Alternately, I am usually standing (sometimes sitting) when my PP drops. The lower it drops, the weaker my heartbeat feels. A super low PP is accompanied by pre-syncope and I have extreme difficulty detecting my own heartbeat. It becomes thready, faint, and seems irregular.

LOW or NARROW PULSE PRESSURE = HIGH DIASTOLIC = SOFT HEARTBEAT

Heartbeat

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

Withings BP cuff for iPad and iPhone

iBP graph

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.