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Orthostatic Intolerance home test

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Snookum96, Jun 29, 2015.

  1. Snookum96

    Snookum96 Senior Member

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    Today I tried the at home tilt table test I saw on this site. It is an Omron 10 Series which was recommended as being one of the better ones.
    Here are my readings:
    Lying down: BP 110/72 Pulse 84
    After lying for 10 minutes: BP 107/72 pulse 80
    Immediately upon standing: BP 92/74 pulse 122
    3 minutes later: BP 95/81 Pulse 127
    3 minutes later: error
    I kept repeating the test but it kept giving me errors after this point. It said E5 which means clothing is in the way of the cuff but I was wearing a tank top, so that's impossible.
    I'm thinking maybe the machine couldn't handle my readings?
    My mom, who is healthy, tried this test and her BP and pulse stayed very close to the same and the machine did not give her any errors.
    Has anyone ever had anything like this happen?
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    I have a Panasonic and I got an error message after standing for 8 minutes.

    I didn't look up what it was but I'm thinking one of my numbers was too high to record. I did look up the range it is able to measure.

    I havent had the energy to try again.
     
  3. Scarecrow

    Scarecrow Annie Gsampel

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    @Jodie1980 I think you're correct about the machine being unable to handle your readings. IIRC @Valentijn has said before that the machine will fail if pulse pressure is very narrow. It hasn't ever happened to me because I still maintain a differential of at least 30 even when both readings are low.

    How did you feel at the time? I'm guessing not good.
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    Your pulse pressure was likely too low for the machine to believe it!
    As others have said, this is my experience too.
    Yes, these machines aren't programmed to register the type of readings we get with OI--particularly the low pulse pressure.
     
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  5. SOC

    SOC

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    At the rate your pulse pressure (systolic minus diastolic) was dropping, I imagine that your machine is 'guessing' that there is an error in the reading since a pulse pressure that low is very abnormal. A pulse pressure of 25 is usually considered extremely low and your last measured pulse pressure was 14 and dropping. I suggest you take that data to your GP who may refer you to a cardiologist for further evaluation. It may not be a major deal, but it should be checked just in case. If you have difficulty remaining upright, or dizziness upon being upright more than 5 minutes, you may have discovered the reason.
     
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  6. Snookum96

    Snookum96 Senior Member

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    Thank you all for your responses!
    I always feel better when I can tell someone that actually understands!
    @Scarecrow I did feel horrible! I was shaking, sweating and my legs were prickly. Also my feet were turning blue, my vision was blurry and had trouble breathing.

    @Sushi @SOC
    I hadn't read about pulse pressure before thank you!
    I have seen a cardiologist and she did my BP in a seated position but not standing. At the time I didn't know about OI so I didn't know to ask.
    I have more to add to the list for my next appointment.
    Thanks again everyone, these forums are truly a lifeline even though I've only been here a short time.
     
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  7. anciendaze

    anciendaze Senior Member

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    In this case it appears there was a diagnostic failure to identify such an extreme example of POTS. I'm also concerned about patients who have been given a label (POTS), and left to deal with the condition themselves. I've heard hearsay reports of even Mayo doing this, and basically telling people they just have to live with it. Some doctors elsewhere may have even told patients they just had to "tough it out", which is about as bad as advice can get. This condition is hardly untreatable.

    I do not have any direct evidence of such malpractice. Does anyone reading this have experience with doctors who have identified the condition, then failed to do or advise anything useful about management?
     
    Last edited: Jul 6, 2015
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  8. anciendaze

    anciendaze Senior Member

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    Here's an example of what we are up against in advice from "reputable sources" of medical information.

    Note that this patient had a minimum pulse pressure of 15 mm hg. This is getting pretty close to causing syncope. True, there might really be a problem with a home test of bp. It would have been helpful if that patient had run the same test on a healthy individual, as was done in this thread. It would also be handy to know more about the circumstances.

    There is the standard professional assumption about emotional problems leading a patient to check bp, rather than poorly controlled variations in bp causing anxiety.

    First consider this response by the original doctor: "..you definitely aren't doing yourself any favors by trying to check your own hemodynamic status unless you have special medical training."

    Now consider this part of the response by yet another doctor: "the lack of consistency in the readings is extremely important. When we say low pulse pressure has a prognostic significance in patients with heart failure we mean a CONSISTENTLY low pulse pressure."

    Both specialists are talking about hemodynamics, but both are deliberately ignoring the way heart rate and pulse pressure change in response to changing conditions, a matter of dynamics. They aren't even interested in whether this happened when the patient was upright. Asking for consistently low pulse pressure is tantamount to saying "we aren't going to do anything until there is evidence of substantial damage to the heart."

    Considering what they might do, this may be a good thing.
     
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  9. Mandabear05

    Mandabear05

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    I can't even get a standing reading. Frustrating too because I can't show any information to the drs. They also want me to take my bp right after fainting. Can't do that either because I need to rest a minute too feel better enough and by then my bp has stabilized. I also have been told by supposed specialist I can get care from my primary Dr. And they don't need to see me. Frustrating. I am not diagnosed pots though. I am diagnosed orthostatic hypotension. My bo dropped within 10 min and I had syncope and the test was stopped. My hr did increase the amount to be considered pots but they don't diagnose pots with the blood pressure drop. I am trying to find a new specialist on my own even if I have to pay out of pocket.
     
  10. Mandabear05

    Mandabear05

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    I also have low pulse pressure. The tilt test showed that but i was told it was normal and it is dehydration causing it but I know it is not.
     
  11. anciendaze

    anciendaze Senior Member

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    Dehydration and loss of electrolytes are special problems for people with this kind of orthostatic intolerance. It is not at all unlikely your regulation of water and electrolytes is disturbed by illness. Take special care to maintain hydration and electrolytes.

    You could have neurally-mediated hypotension (NMH) which is not being considered POTS. You could have orthostatic hypotension due to medication. I've had doctors tell me hypotension means low blood pressure (as if I did not know), and my numbers say I don't have low blood pressure. Pulse pressure is generally not considered unless it is consistent. Mine varies a great deal.

    I've learned to control mine so that I don't regularly faint. I had a history of "unexplained loss of consciousness" going back to my teen years. The care I took to avoid this might be considered "morbid concern over health", and evidence of "somatization". I learned what I needed to do without any useful input from personal doctors.

    I am well aware of my own dropping pulse pressure. One recent episode where I felt the need to lie down showed 27 mm. pulse pressure. Most of the time mine is well above that. Most people couldn't guess when their pulse pressure is within 2 mm. of the low end of normal.

    That woman in the linked article had readings as low as 15 mm. pulse pressure. That makes it hard to stand up. Because she had a history of arrhythmia it wouldn't surprise me if she was having episodes of atrial fibrillation. To get this diagnosed it helps to crap out in the doctor's office or ER. She might have had some other problem involving dysautonomia. There were a number of heart problems she did not have, but that is not the same as being healthy and unimpaired.

    I'd like to get some of these experts to put it in writing that it is OK for this patient to drive an automobile with a pulse pressure of 15 mm, or to say this patient has a condition which makes it dangerous to drive an automobile. Don't expect either.

    If you wonder why many people spend the last years of their life in bed, it might be because of this approach to medicine. When a cardiologist tells you a clinical indication has "prognostic value" it could well mean "you already have significant cardiovascular damage, and you will be dead in three years unless we do something." Outside of urging people to "eat healthy and exercise", cardiologists are not doing very well at prevention.
     
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  12. Mandabear05

    Mandabear05

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    My pulse pressure is constantly close. I don't know why. Also I am not on any medication to make orthostatic hypotension. I don't have pots according to the drs so I am pretty much considered fine. There is something going on to mess with my electrolytes but I don't know what. I know that is part of the problem. I don't know what to do other than to try to do salt and compression. The only suggestions given for my syncope.
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    Do you mind saying how low your pulse pressure is? A very low pulse pressure will really mess up you functionality and needs treating.
     
  14. Mandabear05

    Mandabear05

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    It is close and not close at times. It goes between 20 and 30. So not always low I guess. It was and even noted during my tilt table test but nothing else about it.
     
  15. Rlman

    Rlman Senior Member

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    what is pulse pressure? the same thing as blood pressure?
     
  16. Snookum96

    Snookum96 Senior Member

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    Pulse pressure is the difference between systolic and diastolic pressure (systolic - diastolic) I've just started learning about it and haven't found any great resources that talk about low pulse pressure but I will post if I find any.
     
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  17. Sushi

    Sushi Senior Member Albuquerque

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    My autonomic specialist said that anything below 18 qualified you for a dysautonomia diagnosis. I qualified! I'll take my accomplishments where I can get them! :cool:
     
  18. ahimsa

    ahimsa Sick since 1990

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    I first learned about this way back when I was healthy. I used to donate blood regularly. Along with many other restrictions (age, weight, date of last donation, etc.) one that I remember was that the pulse pressure had to be over a certain amount. The minimum pulse pressure was 25, I think. This makes sense because the donor is going to be losing about a pint of blood which I think will make that number drop a bit.

    It always amazes me that doctors shrug off values of 10-15 as being just fine when it's so clear that low pulse pressure is probably part of our problems with dysautonomia.
     
  19. Valentijn

    Valentijn The Diabolic Logic

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    Pulse pressure is a direct indication of how much blood is pumped per heart beat. It should be pretty obvious that pumping one-half or one-third of the normal amount is a significant problem, even when it isn't life-threatening. And when someone refers to a "weak" pulse, that weak pulse is the result of low/narrow pulse pressure, which most doctors probably would be worried about if it were phrased in that manner, instead of using a number.

    I think that most doctors learn about high blood pressure in med school, and therefore assume they are now experts who know everything about blood pressure. Yet they are almost universally completely ignorant regarding low pulse pressure, and even low blood pressure, unless they happen to be working in an ER (A&E). And because they don't understand the extent of their ignorance, a special few feel qualified to spread blatant misinformation without even bothering to google about it.
     
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  20. anciendaze

    anciendaze Senior Member

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    I'd like to have those specialists who ignore episodic low pulse pressure to say what might be considered too low, even temporarily. I have the feeling they would not set any value short of zero. Perhaps they mean: "Even if your pulse pressure temporarily goes to zero, you will still be in good health when you wake up."

    Remember that about 1/3 of emergency department cases are known to involve syncope. This completely omits cases like automobile accidents where confusion and retrograde amnesia may hide episodes of syncope.
     
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