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Sufferer

BP good but still dizzy upon standing

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My BP is good when i take vitamin D to fill up my low levels.

 

However, i still suffer from dizziness upon standing. Hence i still don't feel good.

Anyone know why this could be? Anyone have this? Is there a form of dysautonomia where BP is good but you still suffer orthostatic intolerance, if so what is is it called?

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@Sufferer - POTS causes orthostatic symptoms when your HR increases upon standing but your BP stays about the same. You do not have to have abnormal BP to have POTS. 

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This happens to a lot of people, it usually has to do with blood not getting to the brain but not necessarily connected to low BP or tachycardia. 

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Normally it runs 100/60 and i have low vit D. If i go to higher levels i achieve ~120/80.

Ok i always thought POTS included low BP. Strange.

I tried to test myself with a pretty decent home BP meter if ny heart rate goes up 30 when standing but it didn't. Is such a meter good to use standing for testing HR?

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@Sufferer - a good HR measuring device should be able to detect an increase in HR upon standing. In order to determine if your dizziness upon standing is caused by POTS or another dysautonomia you should check this out 

This tells you how to measure your orthostatic vital signs properly. 

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You don't even need to have an abnormal HR either to have symptoms unfortunately. My BP and HR are usually perfectly normal yet I am unable to stand for severe presyncope, & very lightheaded sitting up too. I met criteria for POTS on testing but mostly not in day to day life. 

What even a lot of doctors fail to understand is that cardiac output is not equal to, nor can even be approximated, by measuring these variables. 

Cardiac output, ie the amount of blood pumped per minute, is stroke volume (amount pumped per beat) multiplied by heart rate. 

The equation is CO = SV x HR

So stroke volume needs to be known (and is only measurable with invasive/complex tests) in order to measure cardiac output, which is actually far more important than blood pressure. 

You can have a normal BP with a low cardiac output since MAP (mean arterial pressure) is the product of cardiac output x vascular resistance. 

So two people can have the exact same blood pressure, but one may have a good cardiac output and low vascular resistance - this could be an athlete with a large blood volume, and another can have a miserably low cardiac output and high vascular resistance ie the sympathetic nervous system is frantically trying to compensate by making all the blood vessels constrict, hence, the overall BP as measured at the arm looks "perfect" but the tissues including brain are not receiving an adequate blood supply. 

Now, I just wish someone had the solution!

B xxx

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105/65 after 5 min lying down in rest
Hr 69

114/66 sitting up straight, then after 1 minute
Hr 76

110/68 sitting up straight, then after 3 minutes
Hr 80

106/72 stand up at 5 min, wait 2 minutes and measured at 7 minutes
Hr 96

116/76 standing measured at 9 minutes
Hr 97

 

I think i didn't do it quite accorddingly to the test. When i stood up i wanted to measure at 6 minutes, but the machine didn't detect it because i let my arm hang down, so i stretched it out again in front of me.

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Very similar to me! (except I can not remain standing that long & my diastolic tends to go up a bit more)

Your HR increase is just about borderline for POTS - going from 69 lying to 97 standing is 28bpm. 

Typically the threshold for a POTS diagnosis is 30bpm but I have also read of 30 being used for a tilt test, and 27 or 28bpm being the cut off for an active stand test which is what you did (as the latter uses the leg & trunk muscles). For adolescents an increase of 40bpm is quoted. 

The cut off is very arbitrary though, & whilst meeting it can be helpful in terms of a "diagnosis" for disability or other practical purposes, it is not particularly helpful to apply it rigidly in determining if/how to treat a patient, which I personally believe should be based on alleviating symptoms rather than obtaining a certain heart rate or blood pressure. 

Also, POTS in itself is not a disease as such, it is a description of feeling unwell upright and having an increased heart rate. There is always something causing it which should be looked for.

B xxx

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For a normal person, does the heart rate increase temporarily and then drops back to what it was before? Say after one minute?

My energy is always low.

Especially if i have to work in an airconditioned room, or in hot sun and then must bend through my knees, i get a lot of dizziness.

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44 minutes ago, Sufferer said:

For a normal person, does the heart rate increase temporarily and then drops back to what it was before?

Ive had a lot of discussion about the exact same thing with people on this board. I've tried to compare myself against healthy persons (namely, my coworkers and my dad). My dad had a resting hr of 60, he stood, it increased to 65 then went down to 61. He is fit. One of my coworkers had the same pattern. 70 then 77 upon standing, and after a few seconds, went back down to 70.

 

That is whats supposed to happen in someone with no orthostatic issues and that is not dehydrated etc.

 

BUT. 2 of my other coworkers both had big increases in hr upon standing from sitting. Namely, sitting their hr were around 80. Upon standing it went to 110 and it fell back to 90 within a minute. They do not have any symptoms of pots.

 

My heart is 60-70 laying, sitting is 70-80 and standing is 90-100. Its incredibly frustrating because i do have symptoms most days and upon bending etc. But it's not as extreme as others. Im in the process of getting a TTT done and see if i have it or not. Maybe i have another issue other than pots (i wish) since sometimes i do not have symptoms upon standing.

 

This illness is annoying, because its not like theres a simple blood marker to be found and boom here you go you have pots. Physicians have to go with your symptoms and your heart rate response to standing only with a TTT.

 

It also doesn't help that most symptoms look like a big panic attack for some or increased anxiety. It delays the diagnosis.

 

Overall, even if my symptoms are mild (hopefully it stays that way or im diagnosed with something other than pots) its incredibly annoying to have and have the doctors believe you.

 

(end of my rant)

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I feel you and hope you get something out of the TTT. I have been pondering going to my GP but am worried i'll get the standard "eat some more potato chips and some licorice" reply. "O yeah have you tried exercising?".

Its difficult enough to tell your partner you cant keep up with simple cleaning chores, but it would help if you can get a diagnosis.

There is a center here where i can get a TTT but i need to go through the GP to get basic vitamin markers excluded :(

Probably he will think i'm exxagerating.

 

Hope you find something!

 

I will do a couple reruns with the testing and update.

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Maybe take some of your home readings with you plus a well written handout like the ones from this site on POTS. That should help the discussion along & provide some info if they are not familiar with it.

B xxx

 

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My numbers vary significantly from day to day. On the day of my TTT, I was feeling pretty good, so they only measured a 30 bpm increase in HR in 10 minutes. The doctor didn't want to give me a diagnosis of POTS, because it was at the cutoff.

I wear a smart watch that measures HR continuously. I often wear a finger pulse ox to make sure the watch is calibrated correctly (and because my O2 trends low). Sometimes I see only 25 bpm increases upon standing. Other times I see a 50-60 bpm increase. Heat makes mine worse. An active day usually results in worse POTS the next day. Eating too much for dinner will also make mine worse the next day. A bad night sleep, makes me more potsy. I'm new to this diagnosis, so I probably don't know all the things that make it worse.

Knowing your numbers before you go in, and having them written down (ideally a bunch of times on different days), may help. It did for me.

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12 hours ago, Random-Symptom Man said:

The doctor didn't want to give me a diagnosis of POTS, because it was at the cutoff.

How frustrating! A good physician would not go solely on the numbers but also on symptoms. So - symptoms and an increase of 30 bpm upon standing within 10 minutes = POTS ( IMO )

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14 hours ago, Random-Symptom Man said:

My numbers vary significantly from day to day. On the day of my TTT, I was feeling pretty good, so they only measured a 30 bpm increase in HR in 10 minutes. The doctor didn't want to give me a diagnosis of POTS, because it was at the cutoff.

I wear a smart watch that measures HR continuously. I often wear a finger pulse ox to make sure the watch is calibrated correctly (and because my O2 trends low). Sometimes I see only 25 bpm increases upon standing. Other times I see a 50-60 bpm increase. Heat makes mine worse. An active day usually results in worse POTS the next day. Eating too much for dinner will also make mine worse the next day. A bad night sleep, makes me more potsy. I'm new to this diagnosis, so I probably don't know all the things that make it worse.

Knowing your numbers before you go in, and having them written down (ideally a bunch of times on different days), may help. It did for me.

Sucks man.

Next time do a HIT workout and eat a large dinner day before, load up on alcohol, sleep short, oh yeah and visit a sauna :)

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On 9/2/2019 at 1:42 PM, bombsh3ll said:

You don't even need to have an abnormal HR either to have symptoms unfortunately. My BP and HR are usually perfectly normal yet I am unable to stand for severe presyncope, & very lightheaded sitting up too. I met criteria for POTS on testing but mostly not in day to day life. 

What even a lot of doctors fail to understand is that cardiac output is not equal to, nor can even be approximated, by measuring these variables. 

Cardiac output, ie the amount of blood pumped per minute, is stroke volume (amount pumped per beat) multiplied by heart rate. 

The equation is CO = SV x HR

So stroke volume needs to be known (and is only measurable with invasive/complex tests) in order to measure cardiac output, which is actually far more important than blood pressure. 

You can have a normal BP with a low cardiac output since MAP (mean arterial pressure) is the product of cardiac output x vascular resistance. 

So two people can have the exact same blood pressure, but one may have a good cardiac output and low vascular resistance - this could be an athlete with a large blood volume, and another can have a miserably low cardiac output and high vascular resistance ie the sympathetic nervous system is frantically trying to compensate by making all the blood vessels constrict, hence, the overall BP as measured at the arm looks "perfect" but the tissues including brain are not receiving an adequate blood supply. 

Now, I just wish someone had the solution!

B xxx

Oh boy so all this worrying about BP could be somewhat a waste of time. 

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26 minutes ago, lieze said:

Oh boy so all this worrying about BP could be somewhat a waste of time. 

Not really, @lieze. In my case I am very sensitive to the changes of BP and HR and can tell when I need to worry about it. I can be 70/50 feeling great or 140/90 ready to blow. I personally no longer go by numbers but how I feel, since my BP changes so rapidly.  It is important though to know our readings every day so we can see a trend - or notice any changes in trend. This can be a clue to detecting the need to change medciations. 

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