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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Ongoing decline - how to find answers?

Discussion in 'General Symptoms' started by ylluxion, Aug 11, 2015.

  1. ylluxion

    ylluxion

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    My wife has been going through a very difficult time now for a few years and we have been unable to find any real answers on her continually declining state. Blood tests have revealed nothing and doctors essentially think there's nothing really going on.

    For some time she had a hard time taking birth control on a controlled interval and switched to an IUD. This caused perpetual pain and so she had that removed after about 10 months and has moved away to a NuvaRing. It was thought that perhaps the continual pain might be the culprit in sapping her energy and so forth, but sadly there have been no improvements.

    The situation is becoming debilitating. She is finding herself extremely fatigued day in and day out. Further when she tries to do things such as visiting the store, she is finding herself feeling hot flushes (/ flashes perhaps), dizziness, near fainting with a difficulty breathing that is accompanied by an inability to think clearly.

    She wakes up tired and stays tired. She finds herself hungry and even has (nonspecific) cravings, but nothing satisfies her. She relates that it feels as though she is not getting nutrients, but she can't figure out what that might be. Never feels better after eating; actually feels more tired after eating no matter what she eats. Feels better when she doesn't eat anything, but this is obviously problematic in and of itself.

    She has taken piracetam and hordenine and caffeine sometimes (50-200 mg, but not every day; tries to not get used to and addicted to it). She feels like she's getting used to piracetam and hordenine; not feeling real results. She has constant brain fog - can't think straight, feels like she is zoned out most of the time; cannot focus, constant worry about life issues (such as abused step children and other family struggles).

    Blood tests have come back normal; doctors cannot isolate any problem. Essentially no one is offering real help and she simply is continuing to decline.

    Any ideas on how to isolate this issue or what to really look for as a primary indication as to what her problem could be?
     
    sarah darwins likes this.
  2. Valentijn

    Valentijn The Diabolic Logic

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    @ylluxion - Most of her symptoms sound like they could be due to Orthostatic Intolerance (OI). OI means there is a drop in pulse pressure or blood pressure, and/or a rise in heart rate (tachycardia) after being upright for too long. It can be tested at home with a blood pressure monitor.

    Some forms of OI hit immediately upon standing, but the trickier ones can take a while to have an impact. Hence it can help to stand still, leaning against a wall a bit for support, for 30 minutes to see what happens. Low blood pressure is pretty self-explanatory, but low pulse pressure is less obvious and can cause similar symptoms.

    Basically low pulse pressure is when the difference between the systolic and diastolic reading get too small, and it reflects the amount of blood being pushed around by the heart with each heart beat. Low pulse pressure can result in a lot of "ERROR" readings on most blood pressure monitors, because the pulse becomes too weak for the monitor to detect it regularly enough to give a proper reading. A pulse pressure of 40-50 is pretty normal, and under 30 it can start to feel pretty awful.

    If there looks like there might be problems based on home-testing, a Tilt Table Test can be performed at most hospitals to get an official diagnosis. Though it needs to be altered from the typical one to last longer (typically 45 minutes) to catch the delayed-onset OI. OI can usually be treated, once it is diagnosed and the underlying cause is investigated.
     
    sarah darwins likes this.
  3. justy

    justy Senior Member

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    So sorry for your wifes condition - all sounds horribly familiar. My suggestion would be not to waste any more time with 'regular' Drs and testing and get ASAP to an M.E/CFS specialist. I wish I had done that sooner rather than waiting 7 years to go and see one - it was found that I had at least three chornic bacterial infections and immune system dysfunction. They are more familiar with the symptoms, testing and treatment than non specialists who often have no clue at all.

    If you let us know which country or continent you are on we could perhaps recommend some?
     
    A.B. and sarah darwins like this.
  4. Christopher

    Christopher Senior Member

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    Please consider toxic mold as a driving factor of her illness. I'm dealing with it currently with some success, but it's been a nightmare for me for 10 years.

    http://paradigmchange.me/
     
    sarah darwins likes this.
  5. A.B.

    A.B. Senior Member

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    More tests. Done by doctors that have experience in diagnosing rare conditions or treating difficult cases. Guessing isn't a good problem solving strategy.

    Forum members will be able to give more specific advice if you are specific about the tests that have been performed so far and the conditions that have been definitely excluded.

    You may want to write all possibilities down and then try to start excluding them one by one.
     
    sarah darwins likes this.
  6. ylluxion

    ylluxion

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    @justy We're in the USA in Ohio.

    Appreciate the various input so far. A lot of these things have crossed our minds, but you end up getting lost at sea so to speak with no one really to talk to or who understands where you're coming from, especially in the medical community. Our choices have seemed limited and finances are such that we can't afford much and so this is a really hard thing to deal with... :(
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    A lot of those symptoms are like what I had when my blood sugar was poorly-controlled because my diet was too high in carbs. Hunger, cravings, feelings of malnutrition, tired after eating, hot flushes, dizziness - all of those were almost-completely eliminated when I cut out gluten, reduced grains generally and reduced sugar as much as possible.

    Does she find that she has to eat something urgently or else those symptoms become overwhelming, maybe also with nausea? That's what it used to be like for me.
     
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  8. ylluxion

    ylluxion

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    @MeSci unfortunately food doesn't seem to effect her state except to make her feel worse no matter what kind of food (non-carb or carb) it may be. That is definitely one of the more confusing aspects of this...
     
  9. ylluxion

    ylluxion

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    Here are some of her blood pressure and pulse readings over the last couple hours.

    The first is seated:
    • 101 / 69 - 76 (BPP: 32) (00)

    These are standing (about 30 minutes between each one):
    • 100 / 80 - 94 (BPP: 20) (01)
    • 95 / 76 - 90 (BPP: 19) (02)
    • 98 / 68 - 95 (BPP: 30) (03)
    • 114 / 71 - 98 (BPP: 43) (04 - cup may have been slightly loose)
    • 101 / 36 - 96 (BPP: 65) (05 - so remeasured with tightened cup after a minute)
    • 104 / 66 - 102 (BPP: 38) (06)
    • 111 / 77 - 81 (BPP: 34) (07)

    These standing measurements were taken when she felt quite terrible and greatly needed to sit.
     
    Last edited: Aug 11, 2015
  10. Valentijn

    Valentijn The Diabolic Logic

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    Pulse pressure is 32 here. Fairly normal.

    Pulse pressures are 20, 19, and 30 here. 19 and 20 are very low. For comparison, if pulse pressure goes under 25 due to sudden blood loss, it's a medical emergency. Having low pulse pressure after standing for a while fits the general description of Neurally Mediated Hypotension.

    A few very basic things which can help are keeping legs elevated, laying down for a while when light-headed, and avoiding standing still. A heart rate monitor can be useful in seeing when there's a problem, or when there's about to be a problem, since the heart rate will usually rise to try to compensate for the falling pulse pressure.

    Big meals and hot showers are also notorious triggers of OI. Smaller meals with some reclining afterward can help. As can using a shower chair and luke-warm water.
     
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  11. ylluxion

    ylluxion

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    @Valentijn FYI, as you may notice I added 4 more measurements and added a numbering scheme for the data for more easy reference. Measurements #04 & 05 were done in quick succession due to fear of the cup perhaps being slightly loose in 04, but the measurement in 05 was quite shocking so we didn't take a measurement for another 45 minutes or so.

    So these new differentials are 43, 65, 38, and 34 respectively. Unfortunately she's essentially not felt any better, at least not markedly so and the during the last measurement she was quite stressed out over some things going on.

    Interesting on the shower front, she takes warm and cold showers because hot showers make her feel badly and so she avoids them. She always finishes showers with cool or cold water.
     
  12. Valentijn

    Valentijn The Diabolic Logic

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    It's best to wait a couple minutes between measurements. Otherwise it tends to give a pretty inaccurate measurement.
     

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