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POTS probable?
Posted: 19 November 2015 05:28 PM   [ Ignore ]  
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Hi all, new to the site and wanted anyone else’s opinion on my situation.  Let me know what you think.

History:
31y/o male, serving 13yrs active duty in the USAF.  Was in good physical condition when all this began ~3 years ago.  I had several episodes spaced apart by months/weeks of passing out.  They were while standing, cycling, exercising,  climbing stairs, urinating even prolonged sitting.  Many tests were run ranging from a dozen EKG’s to EEGs, ECG’s to stress tests, all returned normal.  Finally a cardiologist diagnosed vasovagal syncope.  More recently I saw a doctor at Stanford and performed the tilt table test and a few others.  His words on paper “your primary diagnosis is vasovagal syncope with mildly exaggerated postural tachycardia”.  I know what vasovagal syncope is and I’ve read up on POTS, my questions are: Why is the primary diagnosis vasovagal as opposed to POTS?  Additionally, what does the “mildly exaggerated” before POTS mean?

Symptoms:
130+ bpm while standing for ~10min.  Blood pressure remains fairly steady. 
Experience blurred vision and distorted hearing during the increased heart rate. 
Experience migraines associated with prolonged physical activity, usually begins within 1hr of activity.  These migraines pass after a couple of hours of rest, lying down or at least reclined with legs elevated.
Fatigue sets in rapidly during exercise.
Blotchy skin in extremities, nails will often appear purple when skin has this effect.
Hands and feet also get very cold at times despite feeling comfortable otherwise.
Pretty constant lightheaded feelings throughout the day.

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Posted: 24 November 2015 03:16 PM   [ Ignore ]   [ # 1 ]  
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Hi and welcome to the forum! Although I don’t have an easy answer to your question, yours brings up a great point. I would recommend always beginning with your doctors to find answers to your (excellent) questions (preferably in person). Likely, they’d be able to offer some insight that could be helpful in figuring out these sorts of things. I agree with you that something seems amiss, but they may be able to clarify their statements, and you never know—it may make sense! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 24 November 2015 11:20 PM   [ Ignore ]   [ # 2 ]  
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Dr. Diana - 24 November 2015 03:16 PM

Hi and welcome to the forum! Although I don’t have an easy answer to your question, yours brings up a great point. I would recommend always beginning with your doctors to find answers to you (excellent) questions. Before we go off on our own looking for answers, I think we should ask our doctors these very questions. Likely, they’d be able to offer some insight that could be helpful in figuring out these sorts of things. I agree with you that something seems amiss, but they may be able to clarify their statements, and you never know—it may make sense! wink

First off thanks for the website and your time!

I’ve attached my doctor’s response where he dodged my questions by simply restating his diagnosis.  I also have questions about his assessment of my heart rate being only 33 above baseline.  What’s baseline?  If it’s meant to be my resting heart rate while lying flat…his value of it is way off.

I’ve recorded my resting heart rate while lying flat many times here. (use the tabs at bottom)

The Propranolol 10mg 1/day may be decreasing it a bit since I began taking it but Friday before starting it I was around 70 on several tests.  He claims the difference from baseline was only 33, while 125 was the maximum heart rate.  That would mean the baseline would have been 92.  92bpm was never measured anywhere and that’s a ridiculous resting heart rate for someone who’s been active duty in the military for the last 13 years.  Additionally, I remember him having written down and showed to me my max heart rate as 131.  So 131 - 70 gives us a 61bpm differential.  Isn’t that how its supposed to be done?  Please help me understand if this isn’t the right method.

A further observation about his notes is he never documented my tremors during the test.  I began shaking considerably all over about halfway through the test. I didn’t find this out till after doing some google research, it is a very commonly reported symptom of PoTS.

For many reasons I now ask myself if I should find a different doctor.

I’ve emailed him back with all these questions, sans the different doctor question (lol) and await his response again.

Anyway, thanks again for this great site and forum and I look forward to hearing your opinions!

V/r,
-Clinton Miller

edit:  Had trouble getting .txt or .zip to attach, so I’ve added it to my gdrive.  Please view it here.

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Posted: 25 November 2015 10:39 PM   [ Ignore ]   [ # 3 ]  
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The Dr replied and this is what I understand it to mean: They don’t diagnose PoTS based on a starting resting heart rate.  They take a baseline at any time during the other tests done while you are lying flat.  They then incline the table for 10min and see if you’ve increased by 30bpm by the end of it.

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Quoted:
“That HR was your HR while resting supine. A HR in the 60s to 70s is within the range of normal variability, most patient’s HRs are elevated from stress during the testing. We always use the change in HR, not the absolute HR, to diagnose POTS.”
—————

Sounds ridiculous to me, but I’m just a patient…is this being done right Dr. Diana?  So if I got on the table with a 120 heart rate, would I then hit 150 at the end of the incline?

All of this is more of a curiosity at this point since I think my military Dr. will take the results and say I have PoTS…since I DO meet all criteria for it.

This Stanford doctor seems intent on me having vasovagal syncope however:

—————
Quoted:
“Is there a reason you are especially concerned about not being diagnosed with POTS? The good thing is that the medications we use for severe vasovagal and syncope and very similar, so you should not have to circle back. Thank you for brining the tremors again to my attention.”
—————

Everything I’ve seen on vasovagal syncope says either my BP should drop or my pulse or both…  But my BP stays steady while my heart rate climbs until I pass out…why would he be thinking vasovagal after seeing my tilt test?  I was diagnosed with it years ago but he’s seen what my body does at this point, there’s no indication of vasovagal at all.  Thinking about this now…vasovagal is supposed to be a lifelong condition right?  Would PoTS override the vasovagal response?  Or did I really never have vasovagal to begin with?  If that’s the case, I’ve had PoTS much longer than I originally thought…

I continue to think this doctor either doesn’t know what he’s doing or he simply wants to milk the military for tests…

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