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NASA 10-minute lean test: Testing for OI in ME/CFS patients (video)

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by ahimsa, Jun 19, 2017.

  1. ahimsa

    ahimsa no longer active on this forum

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    The Bateman Horne Center has posted about research using the NASA 10-minute lean test:

    https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

    Here's a quote from the web page:
    And here's the video from that page:



    I have not watched the whole thing but it looks interesting.

    I do wonder about false negatives, though. Are there patients who would be found to have OI on a tilt table test who would pass this kind of test? But the passive standing (leaning against wall) does look better than the simple standing test that was advised years ago.

    Any thoughts from the folks who can read/understand medical details better than I can?
     
    Last edited: Jun 19, 2017
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  2. lnester7

    lnester7 Seven

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    I will disagree, 10min is not enough, a lot of CFS plp will be ok within that time frame, why the TTT will be run for 30min. The problem is if the test fail then CFS patients might not be indicated things that they can change lives.
    I went from bed ridden to walking w OI drugs and I failed the first TTT (it was run during my period) which is not supposed to happen, but nobody told me that.
     
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  3. ahimsa

    ahimsa no longer active on this forum

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    @lnester7 - As I said in that initial post, I am also quite worried about false negatives. If a test shows that you have no problem with Orthostatic Intolerance (OI), but you do, then it's almost worse than not knowing at all because you'll stop pursuing any treatment for OI.

    On my two tilt table tests (one was done for initial diagnosis and then another was done when I filed for disability) it took 20-30 minutes before my blood pressure plummeted down to almost nothing. Also, the Johns Hopkins recommendations used to be that the tilt table test should last 45 minutes. (guidelines maybe different now? I read their guidelines for tilt table testing sometime around 1995 when I had my first tilt table test)

    On the other hand, I have read a few posts on this forum saying that experienced doctors can look at the data and see abnormalities quite early. Folks have said that with better testing the doctors can see problems early on. So perhaps less time is needed if a doctor knows what they are doing? (but this was said in the context of a tilt table test, not a passive standing test, I'm not sure if the same is true)

    And then one more variable is that this is a passive stand (leaning against the wall). So it's certainly not as bad as the simple standing tests. But I still don't think this test puts as much stress on the autonomic system as the tilt table test.

    Anyway, I hope more folks will chime in with their thoughts! Maybe @Sushi has thoughts on this?
     
    Last edited: Jun 19, 2017
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  4. Richard7

    Richard7 Senior Member

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    @Inester and @ahimsa If you look at the test it is I think pretty severe. You can have no more than 1 litre of water a day for the previous two days, salt is limited, no caffeine etc. They want you in a "clean state."

    I do not really feel the need to do the test to prove I have OI. I take plenty of salt, water and coffee and still hit 136BPM yesterday without leaving the house. On the weekend I hit 160bpm crossing the road. When I measure it on waking my resting heart rate is usually in the 40s or 50s, and if things are going well it can be in the low 50s when I am sitting at my desk. But after hitting 160 it might not get below 90 for an hour or so or below 60 the following day.

    Thats with 6 litres plus water and tea and 6-8tsp salt and at least 4.5 standard espressos. I cannot even imagine drinking 1 litre of water a day or doing any of the other stuff needed to take the test.

    But for people who have less clear cases I would think that it could work quite well, and from the case studies that lucinda bateman has presented in other videos I think it is pretty clear that she is not just looking for people who reach some arbitrary cut off but anyone whose system is not working as it should.

    And there is of course a world of difference between a test needed to convince someone who does not want to believe that you are ill and a test that will help you or your doctor work out how to get you well.

    So I am glad that they are doing propper research, and hope that it leads to better outcomes.
     
  5. ahimsa

    ahimsa no longer active on this forum

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    My concern is actually about those patients who have "less clear cases," as you put it. I worry that those folks may get a false negative using this testing process. Does that make more sense?

    I'm worried that a 10-minute passive standing test would not show any OI problems whereas a full tilt table test would show problems. I'm worried about the test's sensitivity. If this test misses some patients with OI then maybe those patients will never pursue further testing/treatment for OI.

    I think the point of this research is to show that a cheaper, passive standing test is good enough, and will detect enough cases of OI to be worth the risk (meaning there would be few false negatives). That would mean that a full tilt table test (which is more expensive) might not be needed.

    Maybe I'm missing something but I thought it might make more sense to do a study to compare testing a patient with the tilt table vs. this passive standing test? Meaning, take a set of patients and test them using both methods (and don't let the doctors/techs know which patients have OI) and see what happens? Wouldn't that be a better way to see whether this passive standing test is accurate?

    I'd like hear comments from others who know more about autonomic testing.
     
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  6. Dechi

    Dechi Senior Member

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    I think it depends on a lot of factor whether the test is conclusive or not. I did a 30 minute table tilt test in a renowned facility and didn't faint. Fainting is not the definitive marker but it seems to me I was better off during this 30 minute test than the 10 minute one.

    Then I did a 10 minute test at my doctor's and at minute 5, I would have fainted if I hadn't grabbed the table behind me. I had a long drive to get there and had slept les than 4 hours that night. I have neurally mediated syncope (revealed by the 30 minute table tilt test, that was done with high end equipment).
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    When I did a TTT it had many parts and took about 1 1/2 hours in all. There were two tilts--one about 20 minutes and the second up to 45 min.
    But, as you say, with NMH, many patients' ANS don't go nuts until after 30 minutes. I had a sudden change about that time and my BP went to 88 systolic, 80 diastolic. At that point I felt so extremely bad that I asked them to put me flat--and the TTT couldn't lower to flat fast enough for me! I didn't faint but felt absolutely ghastly.
    Nor do I. I would have tested abnormal on this test but not nearly abnormal as I was on the longer test. My autonomic doc always did the poor man's tilt at the end of each office visit and that always did show a marked drop in systolic.
    I agree for some patients.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Sorry for my confusion but if your HR hits 160 bpm, how can you drink 4-5 espressos?!! I am not being sarcastic and am genuinely curious. My HR goes into the 160's every time I try to reduce my beta blocker (that I take for POTS) by even 1/4 of a pill. I can tolerate decaf coffee a few times per month but that is my limit.

    On TTT in early 2016, my HR increased by 48 bpm as soon as they tilted me up (and this was only skipping one dose of beta blocker). I can only imagine what might have happened if I had skipped Atenolol (and Midodrine) for two weeks as they initially told me I had to do for the test but then agreed was too dangerous for me.
     
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  9. Sushi

    Sushi Senior Member Albuquerque

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    I also have POTS but while coffee affects my BP (raises it), it doesn't affect my HR.
     
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  10. Richard7

    Richard7 Senior Member

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    @Gingergrrl ok 4.5 standard espressos: a standard espresso is made with 7g or 0.25 Oz ground coffee. My mocha pot takes approx 21g so 3 standard espressos and I have 1.5 to 2 pots most days.

    In truth I only have the coffee when I feel I need it and occasionally I have a day where I do not, but they are pretty rare.

    I do not know how it works but I gathered quite a lot of people with OI took a fair amount of caffeine. And I mentioned it because it is on the exclusion list for the NASA lean test.

    I would also add that in Craig Colby's presentation on the bateman horn youtube site he makes the point that the raise in heart rate is a symptom not the problem itself. He likens it to fever and infection, solving the fever does not solve the infection.

    All I know is that coffee seems top make it easier when I need to stand up. I also know that I am one of those migrainers who found that paracetamol plus coffee could head off a migraine.

    I am dimmly aware that some of the research on PoTS is on norepinephrine transporters, maybe the caffeine is working there. I do not know.

    But in the sort term it seems to make things better.
     
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  11. Richard7

    Richard7 Senior Member

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    @ahimsa I think you are right. It would be great if they compared the NASA test and the tilt table test, in people they know to have issues and controls.

    I also know that on one of the sites I looked at they were saying that the test should be done a few times before rulling out OI, which makes sense to me as I have had days where everything seems pretty good. And I would expect that OI would be as variable as everything else in ME/CFS.
     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    Coffee definitely makes me feel better. Maybe it is the same mechanism as with amphetamines like adderall--which also makes a sub-set of patients feel better. Of course there are more potential side-effects from amphetamines, but I know several people who live alone and need a low dose of an amphetamine to be able to go out and buy groceries and take care of other basic needs--a trade-off maybe, but quite a few ME/CFS docs will prescribe amphetamines for some patients.
     
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  13. Richard7

    Richard7 Senior Member

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    @ Sushi I can certainly understand that need for a burst of energy to deal with food or something. I only qualified with "in the short term" because I can be reasonably sure of quick responses to my actions but just don't know what is going on longer term.

    I have to add that this is perhaps the only place where the 6 - 8 tsps of salt a day would not raise an eyebrow. We are denizens of a very strange country.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I was just asking b/c you had mentioned that your HR went up into the 160's so I assumed that you would not tolerate caffeine or anything stimulating (but you do!) so that was very interesting to me. I cannot tolerate anything stimulating and it all gives me tachycardia, agitation, insomnia, etc. This includes steroids, Methyl B12 & Methyl Folate, and any meds/supplements that are stimulating. In worst case scenarios, I got akathisia (not from caffeine but from even micro doses of other meds). It's so interesting how different we all are!
     
  15. Richard7

    Richard7 Senior Member

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    No I get it @Gingergrrl I try to hack my supps and so on all the time.

    I had to look akasthia up, is it interesting how different we are? we seem to form some compendium or torments and I would rather avert my eyes and other senses.

    But yeah one would should think that the differences would be diagnositic if we or our doctors only knew enough.

    And I know that when I tried something like Freddd's protocol in late 2015 I spent all my time in bed with terrible PoTS so the methyl b12 and methyl folate thing is probably true of me too, though I do not know why or how.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    The akathisia was actually from my attempt at Valcyte of all things back in 2014 (and one final attempt at it in 2015). I was not able to tolerate it at even 1/64th of a pill. I have not had akathisia since then and do not wish it on my worst enemy!

    I never tried Freddd's protocol but all of my attempts from 2014 to one this year at Methyl B-12 and Folate have been disasters. They caused an over-methylation reaction (at micro doses) with agitation, tachycardia, insomnia, etc. When I saw a mold specialist in 2015, she looked at my 23andMe and said that in her opinion, it was better that I do not open up the methylation pathway and that it not working was protective in my case and to leave it alone (and I agreed with her).

    My main doc never pushed the issue again but then on a recent test, my B-12 and Folate levels were really low. So we decided to try one more time and again it was a disaster. So we agreed that I should get a compounded version of the non-methyl version (even if it was cyano B-12 and regular Folic Acid) just to bring up my numbers. But now that I will be doing Rituximab in July, this is on hold b/c my doctor and I both agree that it is not worth it to add in any other variables right now (but I may still try it in the future).

    Caffeine, however does not give me agitation or akathisia but it does give me tachycardia and worsen my POTS symptoms along with insomnia which is not usually an issue for me. I can eat chocolate, drink hot cocoa, and eat foods with caffeine now with no issue but I can only drink decaf coffee or tea. It's strange b/c I used to LOVE real coffee before I got sick.
     

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