The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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OI? Pots? Other?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Eiren, Mar 7, 2018.

  1. Eiren

    Eiren

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    Just tried to do an OI test on myself. IDK if I did it all right, but here's the results:

    Laid down (11:47)
    11:50 91/66 (82)
    11:57 87/70 (89)
    Stood up (12:00)
    12:02 104/77 (112 aryth)
    12:06 103/77 (113 aryth)
    12:11 98/68 (110 aryth)
    12:15 103/81 (123 aryth)

    Then son came home from preschool, so had to stop.

    I did it an hour after eating/drinking, and it was on the left wrist (laid wrist on hip while laying down and testing, prone by side when not testing, and when standing tested with hand up to opposite shoulder and right hand under left elbow). Arrhythmia cordis automatically noted by device.

    I've had two ECG's and passed both with flying colors. But then I was laying down. Are you supposed to get tachycardia when you test just standing still? At most I just moved my head around and moved my arm up to my shoulder.

    Just tested again after showering and such, standing for 45 minutes or so straight, and my reading was 103/87 (98 aryth). I was sitting when I did the reading (just sat down on my bed and immediately pressed start).

    My device helpfully averages the last 3 readings, and now my average is 101/78 (110).

    So narrow pulse pressure - how concerned should I be? Could I have POTS or something like it?

    I'm going to take my meter to Tai Chi tonight and see what my heart rate is like after class. I can make the SIL the control subject. :lol:
     
  2. PatJ

    PatJ Forum Support Assistant

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    Here is an interesting article on different types of OI related to ME.

    When pulse pressure narrows to 20 a person can start feeling woozy. Below 10-15 and a person might pass out.

    I don't have POTS but I think I have Neurally Mediated Hypotension/Syncope. I have low BP to start with, but the longer I stand the narrower my pulse pressure becomes. I'm limited to around 30-45 minutes of being upright before I have to lie down for 80 minutes which improves my circulation until I'm upright again.
     
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  3. Eiren

    Eiren

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    Yes, that article is really helpful.

    But how does a person know how much blood they have in their body? I mean, I'm not sure how that's measured. :cautious: :lol:
     
  4. PatJ

    PatJ Forum Support Assistant

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    Apparently it's difficult to measure accurately. Most methods rely on estimates or indirect indicators. This article provide an extensive overview of blood volume measurement.
     
  5. kangaSue

    kangaSue Senior Member

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    Where you doing the "Poor Man's Tilt Table Test" on yourself? ( http://oiresource.com/oitest.htm )

    You need to remain as still as possible during this test so you need someone else doing the bp recording to get a more accurate picture.
     
  6. PatJ

    PatJ Forum Support Assistant

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    You also need to give it enough time to see results that sometimes take while to appear. My pulse pressure slowly narrows the longer I'm upright, but a 15 minute test won't show it properly. I have to stay upright and very still (no muscle contractions) for 30 minutes or more to get reliable results in a PMTTT. A graph of the results makes it obvious that my pulse pressure is slowly narrowing over that period of time.
     
    Last edited: Mar 10, 2018
  7. Eiren

    Eiren

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    Yes, but with a wrist cuff you should let the arm rest by the side between reading, and then bring it up to heart level. So, yeah, maybe not so good for this test. My SIL has an arm cuff, maybe I can borrow it.

    But I started Lyrica, and feel dizzy and drunk all the time - hopefully this wears off. But I'd like to wait until I feel better before I redo the test.
     
  8. Eiren

    Eiren

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    So, you'd need a referral to a hospital nuclear department, and follow the instructions in the test.

    I'd like that (except for the whole blood draw thing :ill:), but I'm not hopeful I could convince anyone here to do it.


    Hmm, I have the tendency to faint after blood draws. Now I ask to lay down, and stay laying down for a while after, to prevent the embarrassing collapse in the hallway into strangers. I faint somewhat easily, so I thought it was just that. But during draws it's like I can feel the blood being sucked out of my arm. Which is gross. But now I'm wondering if my reaction is just because I don't have much blood to begin with, and my body is trying to protect itself.

    My body is also stressed right before my period. I develop headaches and an intense craving for salt, especially salty potato chips. I chalked that up to PMS, but now I'm wondering. I also feel faint and nauseous on the first day of my period (when it's very heavy) and have an aversion to anything that isn't salty carbs. I though maybe it was low iron (my ferrittin measured 27) and took NOW ferrous bi-glycinate for a few months, but other than making my poop black, I'm not sure it helped too much. I'd like another measurement of my ferrittin, but I'm not sure I can convince my GP of that since it was "fine."

    I have increased my salt consumption. And I eat licorice (with salmiak, it's a Dutch thing). But - I don't know what exactly is going on. So it's hard to know what to do.
     
  9. PatJ

    PatJ Forum Support Assistant

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    It would be surprising if having a blood draw would deplete you of enough blood to cause that reaction (assuming a typical amount of a vial or two), but then I've read that some people with ME have significantly less blood than normal, so maybe you're right.

    Do the headaches ease if you lie down? It sounds like your body craves salt to retain fluids and increase blood volume.

    Do you know if the salmiak is flavored using real licorice? Licorice candy is often flavored with anise or fennel. In that case it wouldn't have the blood pressure raising effects of real licorice.

    I've tried increasing my salt until I felt sick from it but it didn't increase my BP at all. Licorice supplements (not DGL), and licorice tea haven't made any difference either.

    Have you tried electrolyte drinks to increase your blood volume (something sugar free like Ultima Replenisher)?

    Inclining the head of your bed by six inches is another option. It's often recommended as a way of increasing blood volume because blood circulates differently when a person is slightly inclined. More fluid stays in the blood during the night instead of making its way into the bladder. I have my bed inclined and it helps me to get upright without feeling dizzy (which happens if I lie flat).

    Yohimbe can raise BP but it interacts with LDN so I can't take it (it causes my BP to bounce up and down). It's another option for you to look into.
     
  10. JES

    JES Senior Member

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    Lyrica sounds to me like the worst possible drug for a POTS/OI patient. I remember trialing Lyrica years before I developed POTS symptoms and felt some POTS-like effects from it within a week of starting. Now with POTS I cannot even imagine how dizzy I would feel with Lyrica. There are other antidepressants that may actually help in POTS.
     
  11. Eiren

    Eiren

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    The headache doesn't go away when I lay down, but it's much worse standing up.

    And it's real licorice. It's a Dutch thing. Bad tasting black stuff.

    I'll look into mcguyvering my bed. I use three pillows, but need to do something different.
     
    Last edited by a moderator: Mar 11, 2018
  12. Eiren

    Eiren

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    I have it because a rheumy thinks I have fibromyalgia. Idk....

    I'm running out of non narcotics to try for pain relief (arthalgia & tendinitis). I'm trying to give it a week to 10 days. Then I'll see.

    I've told my family "don't mind me, I'm drunk." Lol.
     
  13. PatJ

    PatJ Forum Support Assistant

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    I read a little about it. It sounds... interesting. :)
     
  14. Eiren

    Eiren

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    It is! Funnily enough, even though it tastes gross, I kinda want to eat it.


    Oh, and for more fun and kicks, now the nail beds of some of my fingers are white, and others kinda bluish. Hmm. But if I do the trick where I press down on the nail, they immediately refill. So I dunno.
     
  15. PatJ

    PatJ Forum Support Assistant

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    The bluish might be from lack of blood flow. I went through a period where my feet were often bluish.

    I remembered two other things that might help you since you probably have low blood volume.

    1. If you notice extra fatigue after eating, then very small meals will probably help. I eat meals that are around 1/6 the size of usual, and I eat more frequently to make up for the smaller meals. When you eat, blood is redirected to your stomach to help with digestion. This can cause lower blood pressure after eating. Small meals mean less blood is redirected. If I eat a regular size meal I can barely stay conscious due to the lower BP.

    2. Compression socks are useful for boosting your BP by compressing your calves. You can also get ones that compress your thighs, and/or abdomen depending on how much compression you need and if you have blood pooling. In my case I think my veins don't constrict properly so I get blood pooling in my calves. I wear compression socks all day to help prevent the pooling effect.
     
  16. kangaSue

    kangaSue Senior Member

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    Fibromyalgia is wrongly diagnosed in more than 50% of cases and it is actually Small Fibre Neuropathy. Doing a skin punch biopsy gives the right diagnosis but this in turn can have a wider nerve involvement in being Autonomic Neuropathy and that involves vagus nerve dysfunction

    A Heart Rate Variabilty to Deep Breathing test as a measure of your cardiovagal function is also a guide to your autonomic function.
    http://www.vitalscan.com/dtr_ans.htm
     
  17. Eiren

    Eiren

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    I had nerve tests done last summer, including the skin wrinkle test, and SFN was ruled out (I got all wrinkly).

    I don't know about the heart test. I've had EKG's done, but that's all.
     

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