Poor Man's tilt table results - high diastolic blood pressure

[JCO]

My son is 20 and he has hyper pots.  His autonomic nervous system is turned on and he cannot get it off. Right now, he is not on any meds.  He is trying biofeedback, relaxation techniques, exercise protocol (he was previously an incredible athlete), diet, supplements, etc.  Did a poor man's tilt test today.  Results:

Lying down after 10 mins:  BP 115/65 HR 63

Upon standing:  BP 128/85 HR 93

So 30 beat jump in HR - indicative of POTS.  But the concerning part was what happened next.  At 5 minutes, his BP was 118 over 101.  Repeated it again a minute later and it was 115/95.  The spread between these numbers is called the pulse pressure.  A difference of only about 20 is very low.  Means heart is not pumping enough blood.  Anyone had results like this?  Any insight?  Do I need to take him to a cardiologist?  Should he be consuming all the salt he is taking?  He has an appointment in February with Dr. Wilson at the Cleveland Clinic.

[MTRJ75]

I get these small gaps all the time. Nobody has ever seemed too concerned (except me sometimes). If it would ease your minds, why not consult with a cardiologist though. 

[MikeO]

@JCO My BP is very liable. from what i have read it is not uncommon for dysautonomia folks to experience this. I have not done many poor man's tilt tests but have seen the elevated diastolic pressures and then see it come down substantially. One example was in the clinic when they did a 5 min supine measurement and i was something like 168/102 and the three measurements while standing. last reading was 120/80. i also routinely squeeze a 162/102 and the Docs office then when the nurse rechecks a bit later i will pull a 145/85.

The systolics look really good. if it were me i would spot check BP's for a week to establish a pattern and as always if you are concerned i would reach out to his clinic and ask a nurse

[MomtoGiuliana]

narrow pulse pressure is not uncommon in POTS.  If you search for this you will find other discussion on this topic.

Collected data of his bp and hr can be helpful for when he sees a dr.

Good he will be seeing a specialist but that sounds like a long wait?  Is there a local electrophysiologist who could see him sooner?

 

[Pistol]

@JCO This sounds similar to what happened to me when I first got ill and had not yet received proper medical care. The first step would be an appointment with a cardiologist who should perform a TTT. Then they might prescribe a beta blocker ( usually the first step ). Mild but regular exercise is important, and compression garments. 

I think waiting for the february appointment is too long for his symptoms to go untreated. Does he have a PCP? That could be the first step and he may request a cardiology referral 

[JCO]

Thanks for all the responses.  At least I now know that others w POTS have similar readings.  I have contacted UT Southwestern to see if they can see him earlier than February.  In the meantime, I am going to take him to a Cardiologist.  Thanks again. 

[Sushi]

When I did a TTT in a hospital setting with my autonomic specialist my BP ended up 88/80. I felt really bad at this point and they ended the test. Yes, good to see a cardiologist who is knowledgeable about the autonomic nervous system as soon as you can get an appointment. It is more likely (though not certain) that an Electrophysiologist would know more about this than a general cardiologist.

[Pistol]

11 hours ago, Sushi said:

It is more likely (though not certain) that an Electrophysiologist would know more about this than a general cardiologist.

For me this was not the case. My cardiologist is wonderful, and has really informed himself about dysautonomia. When he ordered a TTT it was an EP that did the test, and he was HORRIBLE! Not only was he ignorant (" You only pass out because you are hysteric"), dismissive (" Your BP is elevated because you take it too much") and uneducated (" POTS is not real, it is a fashion diagnosis" ), but he also deemed the test as normal when it was clearly positive ( later my autonomic specialist reviewed the TTT and said it was POTS, then he confirmed HPOTS with labs that showed high norepinephrine ) 

So - what specialty a doctor chooses does not make them a better physician! 

[MikeO]

22 minutes ago, Pistol said:

So - what specialty a doctor chooses does not make them a better physician! 

Been here as well...

[Sarah Tee]

@JCO, another thing to remember is that blood pressure readings have a margin of error. Possibly not just error from one reading to the next, but maybe even error between the top and bottom numbers in one reading. (I don’t know this for sure, just guessing that errors might happen in every which way.)

Not to say the readings aren’t meaningful, but it can be about repeating the poor man’s test to see if a pattern emerges, and if that pattern corresponds to symptoms.

In autonomic laboratories they have more accurate monitors – I think it’s called beat to beat? – but even those create a rather jaggedy graph with doctors looking at the trend of up, down, stable or spikes.

I have heard one autonomic specialist (a cardiologist) say that he is not concerned about his patients’ pulse pressure and that it is not something he thinks POTS patients should be concerned about. Otherwise it doesn’t seem to come up in POTS lectures. What cardiologists say about it in general, I don’t know.

Maybe it is covered in this lecture:

https://vimeo.com/824663726

It’s a good one to watch anyway.

If you can find a cardiologist who knows about POTS to see your son sooner, that would be great. But not every cardiologist knows about POTS, and some have outdated or wrong ideas about it. Perhaps you and your son have discovered this already! A local Facebook POTS or dysautonomia support group can be a good source of recommendations nearby.

[JCO]

Thank you Sarah.  Makes me feel a little better to where I will not be kept up at night worrying about his pulse pressure.  I think I sleep worse than him worrying about him.  I will definitely repeat the poor man's tilt table test over time.  I am engaging in a full court press to have him seen sooner.  His cardiologist that I took him to a couple of years ago just to make sure his athlete's heart was still just that - athlete's heart - says first appt is January.  But have appt with his PA on Sept 26.  On a cancellation list with a POTS specializing cardiologist in Dallas.  But I will keep the appointment at the Cleveland Clinic in Feb no matter what.  It is just so heartbreaking given that he was on a trajectory to great success in life - only to suffer this blow by a concrete wall.  I just hope and pray that he is eventually able to resume the path he was on.   

[Pistol]

@JCO please know that I know of many, many young people that ended up dead in their tracks from POTS, and many of them got better over time.  Many young people do just fine once treated properly. I had HPOTS all of my life ( albeit did not become severely symptomatic until my fourties ), and it runs in my family, but I found out through the younger generation ( daughter and nieces ) that the earlier we intervene the better the outcome. At least that is the case in my family. 

[JCO]

Thanks so much for the encouraging words.  Hopefully he gets to rejoin life soon.