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Very Confused!!


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My daughter has POTS she is 24, so I am trying to learn what I can about it. This is what confuses me:

My daughters blood pressure gets higher when she changes positions. Than I read that with POTS it usually drops when you stand up.

Also her heart rate goes very high when she stands up, but also it can be very high at resting. I read that heart rate is usually not high in POTS when resting.

Maybe I am just not understanding what I am reading, so if anyone can help, I would be grateful.

There is so much to learn!

Thank you

Mary from Brooklyn

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Blood pressure just doesn't regulate itself properly, so it could be either high or low i believe....I'm not positive but am pretty sure, its more common to be low, but some people have it high.

Heart rate for people with POTS is very high when upright, it is still high when in the laying down or resting position, but not to the degree of when standing....but it will be significantly higher than that of a "normal" person.

Good luck with everything, i know it can be very overwhelming when first learning about things.

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Personally my bp goes from high to low, etc. there are even times when my bp is "normal" and I feel dizzy/lightheaded, etc. Also, my heartrate goes all over the place. Has your daughter had any type of heartmonitor?? I have POTS as well as SVT, and SVT can cause a rapid heart rate while resting, I believe the rapid heartrate associated with SVT starts suddenly and POTS/ low BP gradually..If I'm wrong someone please correct me. :)

Also, welcome to the forum!


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The best way to try to understand all of this is to read what is out there, and find a good dr. to help you out. They can help explain it to you. But, all of our symptoms are not the same. But, as said before it is caused by the autonomic nervous system not working correctly. So, it can be causing too much input, or not enough causing high or low BP. Most people probably have low bp. And for POTS the major thing is increased HR when go from sit to stand. It can be normal to have a "high" resting HR. What is high for her resting? Tachy? Or just not 60 or 70 bpm?

Mine can be high resting too. Especially if you have caffine, depending on what you have ate, your body type, your physical condition/sedentary/athletic, if you are stressed, certain meds, or have been up and down (from sitting) a lot you can have a high resting HR.

Good luck! :)

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Many doctors are erroneously propagating the belief that BP must drop on standing with POTS. This is NOT the case- I didn't realize this until I was an inpatient at Vanderbilt Autonomic Dysfunction Center 2 years ago.

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There is a medical condition where blood pressure drops immediately or very soon after standing - it is called "Postural Hypotension". It is NOT the same thing as POTS although some POTS patients do experience postural hypotension as well as postural tachycardia.

Actually the definition of POTS doesn't say anything about blood pressure readings - BP can be high, normal or low, but often swings between all three.

When I stand up my BP actually goes up slightly and my pulse pressure narrows - this is a normal response to standing upright. I have had 2 tilt tests on one my BP went from 145/90 to 96/88 towards the end of the test. The second tilt my BP didn't drop at all but I was still symptomatic and had a tachycardia of 172/min.

Essentially "dysautonomia" (POTS is a specific type of dysautonomia) simply means dysfunction of the autonomic nervous system. Things can either go to fast/slow to high/low. Everything that your body normally regulates without you thinking about can be affected - heart rate, blood pressure, digestion, breathing.....

There is lots of useful information on the main DINET website - click the link on the top left of this page to go there.


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