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Pots Or Oh?


louloutinks
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Hi

I have recently been diagnosed with ehlers danlos and POTS. Now when I was at the hospital, my HR rose by only 27 and my BP dropped slightly on the top number.

I have had various readings from monitor at home, in which my HR can rise dramatically sometimes by 60/70bpm on standing.

I have also noted that my BP can either go low to 87/30 or high to 150/92 or it can remain approx low normal. Are these up and down readings usual for POTS? I am new to all this and am rather confused.

I have always had a low BP. But some of the readings are really worrisome - like 35/30 was my lowest and that did not seem possible so I took the monitor back and had it checked! I have rather odd readings like 67/60, 102/35 and then an odd 'normal' one thrown in around 120/80.

It seems to me that when I can really feel my heart pounding when I stand, the top number of my BP is low - is this normal too?

I didn't really have much of an explanation of POTS at the hospital hence I am sure I will posting quite a lot on this forum!!

Since upping my salt/water I am waking up with really tight puffy hands and am not sure if this is ok either.

Many thanks in advance, Tinks

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Hi Tinks!

Welcome to DINET! You will find alot of wonderful people here who will indeed help you out alot! :) I dont know your story but I hope it was a relief to have a diagnosis as it is for so many of us who struggled to get one. I would say for the BP reading to make sure you take your reading 2 times to make sure your number is accurate. I would sometimes do it 3 times to make sure that was really my number! I also switched from a wrist cuff monitor to an arm cuff one. The wrist cuff ones are good but they are farther away from the heart and can give you lower readings according to some of what I have read. Since I switched I noticed my BP was a little higher than I thought it was from the wrist cuff. I think your puffy hands means it's working and making you retain water which seems to be an issues with us dysautonomics. Hope you have a great week and look around the forum and especially read all the stuff that is on the home page of DINET. Very helpful stuff there!

KC

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Hi KC

Oh yes am very relieved to have a dx for all the wierd and wonderful symptoms I have been getting over the past few years. Some were so odd that I felt I did not want to bother the doc about them. Even when I did report my tachy on standing to the local rheumy, all she did was take my heart rate sitting down and said that I was fine!

I have checked the BP again when they have been real low readings and they come out round about the same. This is what I do not understand is why I never seem to get the same readings either - is this a POTS thing or is this usual?

However last week I did visit my doc (after dx) about my neck pain and headaches and she had to google dysautonomia. She also said this had noting to do with the daily headaches or the painful tingling feelings I have on my skin. But this is not what I was told and not what I have read!

Ah to find a doc that knows these things!

I was thinking of stopping the salt because of my hands but not sure if it is a good idea as I was told to take it! Tinks

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Isn't it so annoying when you get tested and your body doesn't malfunction the way it normally does! You want to be able to SHOW the Dr. what happens on a daily basis and all of a sudden your body decides to cooperate. This happened to me during a tilt test -HR went up by 38 beats, but only rose to 108. When I get up in the morning it can go as high as 120-140 and be 110 just doing minor stuff around the house. Anyway as a result of that test, I was diagnosed with "mild" orthostatic intolerance -- uh, there is nothing "mild" about this. Your BP readings do sound funny -- I'd make sure your monitor is functioning properly. A lot of us do have low BP - I think this is part of POTS. O.H. I believe is when your BP drops 20 or more points upon standing. Hopefully you'll get some more informed responses from people here who know a little more than me. I hope you find a good Dr. who can help you.

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Hi Naomi

It was rather annoying but at least the time before with the rapid large rise was on my notes.

I have taken the monitor back to the pharmacy to have it checked - all was ok with it - it is just me!

I know some days are better than others for me,but even when I feel ok, my BP can be real low.

I have so much to learn about this POTS.

I also scored 19/30 for autonomic dysfunction but am not sure why I wasnt given a tilt test - so not sure if this is because it is a relatively low score. I just don't understand!

My sys reading goes up and the dias goes down when I stand .... or they remain around the same or reverse -I just seem to be all over the place! :blink:

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