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I don't have OI -- Wrong!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by SOC, Sep 8, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have always thought maybe i just had a low grade OI thing but of late maybe not, i dont have wildly fluctuating bp or pulse etc but do have them on occassions. I looked up symptoms the other day and have a heap of them? here's my weird symptom list that i think are due to autonomic dysfunction.
    head sweats out of nowhere
    head flushing
    pale episodes
    peeing like a race horse
    drinking all the time
    craving for iced cold drinks
    urge to lie down and quickly feel better within 5 mins
    salt cravings
    headaches
    brain fog
    brain fog clarity from mild stimulants that cause vasoconstriction like sudafed
    malaise
    body weight can fluctuate 3-4 kg in a day especially if i have a mung on carbs

    of late have had some symptoms improve like headaches and brain fog with electrolyte drinks etc

    sometimes i think we may not see vital sign changes as our body is adjusting somewhat to this but eventually as it gets worse then we see bp and pulse rate changes.
    SOC likes this.
  2. madietodd

    madietodd Senior Member

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    I just tested my BP meter on 3 of my kids, who have normal BP. All 3 tested low; one got a systolic reading of 97. It looks like I've got another defective monitor.

    Is there a reliable monitor out there?

    I just found this link about reliable meters, on the Mayo Clinic site.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am very happy with my CVS hand pump, digital display model (with memory).

    Sushi
  4. madietodd

    madietodd Senior Member

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    This is my third CVS monitor. I'm thoroughly bummed.
  5. Valentijn

    Valentijn Activity Level: 3

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    Probably. When systolic drops but diastolic stays the same, your pulse pressure gets a bit narrow (not too bad in the examples you posted), and less blood gets circulated with each heart beat. Heart rate increases to compensate. This won't feel like "pounding" because your heart beats/pulse are actually a bit weaker than usual. Hence it's very easy to miss it happening unless you're monitoring it.

    For me, the elevated heart rate also corresponds with a drop in oxygen levels, which is probably resulting from the decreased pulse pressure. With a pulse oximeter I can see my oxygen levels temporarily dropping, followed by heart rate increasing. Then once my oxygen is back to 99% (my body won't accept anything lower), my heart rate starts to slow down, which then causes oxygen to drop again - resulting in heart rate increasing again.

    I can avoid this happening somewhat with careful pacing. I use the pulse oximeter to see what my heart rate is at, and if it's higher than normal, it means I need to rest and especially avoid vigorous activities such as a bath or walking up or down a flight of stairs.
    Little Bluestem and SOC like this.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Rebounder May Help Low Pulse Pressure

    I have a rebounder. It is supposed to help the autonomic nervous system so I decided to see if it would bring my pulse down when it was high. It did not. I am doing 400 gentle bounces in which my feet do not leave the surface of the rebounder.

    A few days later I decided to go back through my blood pressure meter readings and calculate pulse pressure. By a stroke of good luck, my pulse pressure happened to be low, 27 (98/71), on the morning I decided to see if the rebounder would help my pulse. After using the rebounder, my pulse pressure was 44(110/66).

    Fortunately, my pulse pressure is good most of the time. It was low one morning when I got up, so I tried the rebounder again. It went from 28 (103/76) to 46 (116/70). In both cases it increased the pulse pressure by raising the systolic pressure and lowering the diastolic pressure. In neither case did it raise my pulse much. In the first instance it went from 86 to 87 and in the second from 64 to 67.
    heapsreal likes this.
  7. xchocoholic

    xchocoholic Senior Member

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    I was dx with oh at least as far back as 1992, but didn't know that I had pots until
    a couple of years ago. This has completely changed how i live my life. Now I no
    longer get upset when I start feeling like crap after I've been upright for
    awhile. I know it's just my oi/oh/pots and that laying down will make
    me feel better. Sure being supine sucks but not as much as having
    my heart race, sob and a petite mal. I know too that I always get sob,
    heart racing and a petite mal if I'm standing for more than 10 minutes.

    I learned by using my bp and hr cuff that it takes my heart an hour of being
    supine to get back to my normal resting rate. This makes a big difference
    because if I get up sooner my hr goes back up to my pots hr immediately.

    If I wait an hour I have 10 minutes before my hr gets to my pots rate again.

    This isn't always possible but at least I know.
    ahimsa and Valentijn like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
  9. xchocoholic

    xchocoholic Senior Member

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    For the record I just tested this again. My hr was 120 after I made and ate breakfast.
    I had my normal sob, petite mal and heart racing. I refer to these as pots
    episodes now.

    I got up to use the bathroom after about 20 minutes and my pots symptoms
    came right back. I was too weak to re-test and laid back down.

    After being supine for 10 minutes I'm finally feeling clear headed enough to re-test. Bp = 115/72, hr = 77.

    If my normal holds true, after being supine for an hour, my hr will go down to the 60's and I will feel healthy.

    eta. My hr went into the mid 60's range like usual and I felt healthy. I've been like
    this since about 2008. Three years post gf, cf, etc diet. My bp is up which explains the tense
    feelings I've had for the last week. Don't know why tho.
  10. SOC

    SOC Moderator and Senior Member

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    Isn't this just the normal bodily response to exercise? Activity, by itself, should raise your pulse pressure for the duration of the exercise and for some time afterwards. That's normal. Most of the time when we talk about pulse pressure (and blood pressure, in general) we mean resting pressure, or even more specifically, first morning pressure which is an even better indicator of low blood volume. The resting measure is the baseline that's usually used for comparison because activity can change BP, HR, and PP in the moment.

    Or did you actually change your first morning (baseline) pulse pressure this way? If so, how many days (or weeks) did you do rebounding before you saw a consistent change in your first morning pulse pressure?
    Valentijn likes this.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do not know if this is the normal bodily response to exercise because my pulse pressure is usually good.

    In the first instance, I was up and exercising, i.e. standing filling my pill box, which sends my pulse up. It had been going to 89 - 91, but on the morning I had decided to see if the rebounder would bring down my pulse, it was only 86. I did not notice the effect on my pulse pressure until I was calculating pulse pressures a few days later. I continued to calculate pulse pressure as I recorded each reading after that.

    In the second instance, the low morning pulse pressure was an anomaly. If it ever happens again, I will try just getting up and walking around.
    I do rebounding almost every morning, so this was an immediate, not long term, response to the rebounding.

    One morning when my pulse pressure was unusually high at 51 after filling the pill box, the rebounding lowered it to 44. My blood pressure went from 121/70 to 125/81. This did not strike me as a good thing so I am no longer rebounding after I fill my pill box. ETA: I guess what I really should be doing is not rebounding when my pulse pressure is high or getting more than one reading before making a decision.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just want to post this due to your mention of petit mal in another thread, where I didn't want the issue to become a distraction from the thread subject.

    If anyone thinks they may have petit mal, I would advise checking, as it may not be.

    This page seems good.

    This page linked from it has what may be some pertinent info:

  13. xchocoholic

    xchocoholic Senior Member

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    MeSci

    thanks. i found this a few years ago. I even tried the Modified Atkins Diet, mad, which
    is being recommended by some instead of the ketogenic diet.

    I had to abandon it after several weeks because I was constantly pale and
    in a petite mal state. My bg level was hanging at 67 despite eating mad foods.

    In my case, I wouldn't try it again unless I was under
    medical supervision.

    I had petite mals as a child too just not as frequently. My mother just thought
    I would get spacey or refuse to listen. Yeah, mom. Good call. lol.

    tc ... x
  14. xchocoholic

    xchocoholic Senior Member

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    btw, Dr peckerman did an interview on how cfs could actually be from hypoperfusion
    caused by oi. The article is on this site.

    He didn't mention hyperperfusion tho and since our blood isn't leaving our
    bodies we have that too.

    Now to find a solution for oi. ; ) ... tc ... x
  15. NrsNoMore;(

    NrsNoMore;( Stop and smell the roses...

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    Sasha, what is the 30 minute test for OI? I am a nurse and had my doctor's office do a standard tilt test like we do in the ER to diagnose dehydration/ low blood pressure/ Orthostatic hypotension. My BP dropped 20 points from sitting to standing. That was a positive tilt test in ER standards. How is the 30 minute test done?

    NursNoMore
  16. Sasha

    Sasha Fine, thank you

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    It's a long time since I did it - here's a link to a thread on it:

    http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/
  17. ahimsa

    ahimsa Senior Member

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    They do a Tilt Table Test (aka, Head Up Tilt) in the ER? I had no idea.

    The first time I heard about the Tilt Table Test was back in 1995 when Johns Hopkins released a study linking Orthostatic Intolerance to ME/CFS ( http://www.ncbi.nlm.nih.gov/m/pubmed/7674527/ ). There have been a lot of studies since then.

    At the time, the Hopkins researchers were recommending 45 minutes for phase 1 of the test. The word "phase" can be confusing so I'll try to define what I mean by that.

    The first part of the test, which I'll call phase 0, is with the table lying flat, not tilted. Various monitoring devices are hooked up (EKG, blood pressure cuff, IV line in case it is used later, etc,). The patient's baseline heart rate and blood pressure are measured during this time.

    Then phase 1 is when the table is tilted to an angle (usually 70-80 degrees). The patient's vital signs are measured until either the time elapses or enough data is gathered that shows an abnormal result. (or if the patient asks the test to stop, I guess).

    Some doctors stop phase 1 after only 10-15 minutes. Many doctors say that's too short because it will miss patients who have a delayed drop in blood pressure. (That's me! my severely abnormal BP drop didn't come until 20 to 30 minutes into the test) Other doctors say that 30 minutes is plenty. Still others say that it needs to be 45 minutes long. If the patient does not have an abnormal reaction during phase 1 then they go on to phase 2.

    In phase 2, the table is put flat again and the patient is given a drug (isoproteronol, for example). Then the table is tilted upright again. I have a friend who did fine during phase 1 but had an abnormal test result in phase 2.

    Here's a link with some more details in case it helps - http://www.hopkinsmedicine.org/heal...ardiovascular/tilt_table_procedure_92,P07985/

    All of this is made more complicated by different doctors having different opinions on what constitutes a "positive" (abnormal) test and deciding when the test should be stopped. I think by now most doctors agree that it's not that simple that a patient must faint in order for the test to be abnormal. But I don't think they all agree on what is a real positive vs. a false positive, especially when it comes to the IV part of the test.

    I hope this helps. I know some people may get some useful data from an at home test ("poor man's tilt table test") but I'm pretty sure it would not have worked for me. I think home testing for POTS (which shows itself mostly through the increased heart rate, easier to measure) is easier than home testing for NMH (Neurally Mediated Hypotension). With NMH there's often a long delay before the drop in BP (doesn't drop immediately on standing) and any moving around, even just fidgeting or talking, can be enough to keep it from dropping enough to show an abnormal result.
    SOC likes this.
  18. xchocoholic

    xchocoholic Senior Member

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    When I was getting Meyer's cocktails the
    only improvement i saw was that it stopped
    being painful at the injection site. Has anyone
    else tried these ? The nurse administering thuse
    said i was the only patient who complained about
    pain. My veins were hard to catch tho because they
    would role.

    I'm now having seizure like episodes during blood draws
    or ivs. Actually it's more of a movement disorder. I know
    my arms move but not sure what else. Klonopin stops
    it. It's some kind of vasovagal reaction. As if doctors
    didn't already think i was nuts. lol.

    fwiw I'm not sure we can relate fluid intake to blood
    volume. We may just be peeing this out.

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