Julie Rehmeyer's 'Through the Shadowlands'
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Curious How Others Handle This

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by belize44, Feb 13, 2015.

  1. belize44

    belize44 Senior Member

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    I am not sure if there is a thread started about Dysautonomia, but since my diagnoses, I am curious if others here have been diagnosed with this and how you cope with fluctuations in blood pressure. For instance, I find that when I lay down at night my bp skyrockets through the roof and causes nightmares and impaired breathing. Sometimes it inches up during the day, and I try various supplements in an effort to bring it down. Sometimes certain teas and supplements help, but I would like to know how others here handle these fluctuations.

    PS Moderators, if this is the wrong place for this could you please move it? Thanks!
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    I moved your thread to the section of the forum on autonomic dysfunction. There is also another section called "Problems with standing: Orthostatic Intolerance...." Most of the dysautonomia threads are in these two sections. And yes, most of us have some level of dysautonomia. :(

    Sushi
     
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  3. ahimsa

    ahimsa Senior Member

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    @belize44, you might want to try to find a doctor who specializes in diagnosing and treating autonomic dysfunction. There are some cardiologists who do this but not all cardiologists are knowledgeable in this area.

    But there are various tests you could try, ranging from 24 hour monitoring of blood pressure (not sure what that device is called) to a tilt table test.

    Did you get a measurement of your blood pressure while still lying down after you woke up? What was the value? Just wondering.

    I don't have a problem with spiking blood pressure (and have no idea how you would know without measuring it, actually--how does it feel?) but I've read about it on these forums in various places. Here's one thread - http://forums.phoenixrising.me/index.php?threads/oi-with-high-bp.34089/
     
  4. belize44

    belize44 Senior Member

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    Thanks for replying! I have seen a specialist, and tried his suggestions. But for some reason they are no longer working! He had me consuming extra salt, elevating the head of my bed from four to six inches, and doing counter pressure moves to keep blood circulation uniform. But I have had to cut back drastically on salt and lower the bed by two inches as well.
    The specialist did all this, which led to the dx of Dysautonomia. I don't remember the values, however.

    I usually get a pounding headache, and begin to feel very weak and I can hear the blood pounding in my ears. At those symptoms, I usually take a reading and find it is very high. It always frightens me because I feel like my head is going to explode. I will check out the link. Thanks!
     
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  5. lnester7

    lnester7 Seven

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    1) Salt mask my numbers but I stay as symptomatic.
    2) I take BP at wake up time and I follow day based on that, when Low, I increase midodrine (I prefer to increase BP this way). When BP is high for me is actually time to up my electrolyte so 16oz of coconut water or a full Pedyalite.
    3) High BP for me means crash, so lower activity.

    I am still all over the place but I have learnt that what Dr say Vs how my body behaves is differently. So I first need to understand what does it mean (low or high BP) when does it happen. Then I try to address the cause. The other things usually just mask the numbers while I feel the symptoms.
     
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  6. belize44

    belize44 Senior Member

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    @ Inester7: I actually find that very helpful. In thinking back, I can recall times when I had to rush to an early appointment somewhere with insufficient sleep; at those times, my blood pressure got extremely high. So yes, that could be a sure sign of a crash. It has been high all day except for a brief dip down in the late afternoon. I am going to drink my electrolyte stuff and see how that affects it, as well as rest, of course. Awareness is key!
     
  7. Valentijn

    Valentijn Senior Member

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    @belize44 - Elevating the head of the bed and any sorts of exercises don't really seem to sustainable for ME patients usually. Have you tried lying in different positions for a while to see if one works better than others? Do you have a finger pulse oximeter?
     
  8. belize44

    belize44 Senior Member

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    I have tried lying in different positions, but it doesn't seem to make a difference. Elevating the head of the bed did work for over a year but when we have now lowered it by two inches. I'm not sure if that is contributing to the current situation, though. I don't have a finger pulse oximeter, just the blood pressure apparatus.
     
  9. lnester7

    lnester7 Seven

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    I don't know if this is truth but I just saw in the gut summit that high BP is sign of need to detox the liver?
     
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