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Orthostatic intolerance

Discussion in 'Cardiovascular and Respiratory' started by Jonathan Edwards, Apr 6, 2019.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    It's frustrating that there's such a mismatch between these interesting-sounding things that Cort says about her work and what she occasionally says herself and what actually gets published. Her recent GWI work (the basis for the trial that I think is currently ongoing) sounds very interesting but again, I don't know that anything much has been published on the basis for it.

    I think we've got a general problem that challenging questions aren't being asked (at least in public) at these conferences, and I appreciate your being here to pose those questions.
     
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  2. Trish

    Trish Moderator Staff Member

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    There is also the frustrating problem that a researcher tells us a bit about their findings at a conference, but are restrained from telling us the full story and showing the data, either because it's incomplete, or because it has to wait for publication, then we have to wait, sometimes for years, for the detail to be published.

    I guess this is the downside of these open symposium style of events - they give us a taster, but not the full story, and it takes an awful long time to get to the punchline. In the meantime we have articles written by people not involved in the research that can in some cases further confuse the picture.
     
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  3. strategist

    strategist Senior Member (Voting Rights)

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    I'm now slowly coming out of long crash. I now struggle to handle the same walking distance I could easily do before. The other day I fell asleep for hours afterwards out of sheer exhaustion. I don't know what cytokine cascade would feel like but maybe not like this? It feel like there is a controlled shutdown protocol that is being followed by the body. Like it's saying "Okay you did your thing, now you must rest."
     
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  4. lansbergen

    lansbergen Senior Member (Voting Rights)

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    Nature knows best.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think it is the downside of a particular approach to science, more common in the US than here, at least in the past. I never found I needed to suggest any sort of evolving story without giving the detailed results I based that on. The idea that you have to hold back data because of publication rules has always seemed to me to be phoney. I never had trouble publishing stuff I had shown at conferences. I think it has a lot more to do with trying to hint that you have more results than maybe you really do, or trying to hide material from competitors. If you have important stuff there is no need.
     
  6. Hutan

    Hutan Moderator Staff Member

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    I'm trying to find a reference for the need to monitor the patient standing for 10 minutes (rather than say 2 or 5 minutes) in the NASA lean test (or supine/standing test).

    I think Rowe might published something on this recently? Someone had some data on the numbers of people with issues that were missed if the test was shorter.
     
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  7. Hutan

    Hutan Moderator Staff Member

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    For anyone also looking for a reference for the test needing to be 10 minutes long, I've found the following:

    2015 Institute of Medicine report (from page 107)

    https://www.nap.edu/read/19012/chapter/6#107
    ...
    I still haven't found what I had in mind, which I remembered as giving numbers of people identified as having measurable anomalies with tests of 2 and 5 minutes as a percentage of the number of people identified as having measurable anomalies with a 10 minute test. But the IOM reference will do.

    In thinking about what I want doctors to know about the symptom of Orthostatic Intolerance beyond what it feels like, the following points came to mind:
    • Questions around how people feel when standing in line and after baths or showers are useful in an assessment.
    • A supine to standing test needs to include 5 to 10 minutes of lying down and 10 minutes of standing, with heart rate and blood pressure measured periodically.
    • The 10 minute test in a clinic is not definitive. The fluctuating nature of ME/CFS means that there could easily be a different result on a different day. It was found that cerebral perfusion is low in people with ME/CFS when upright including in those people who showed no pulse and blood pressure anomalies during a 10 minute test.
    • If the answers to assessment questions suggest the symptom of orthostatic intolerance, then, even if the 10 minute test does not identify any anomalies in heart rate or blood pressure, there's quite a bit of upside to the doctor accepting that the person has orthostatic intolerance, not least of which is preventing costs to the health system from falls. Identifying the symptom opens the way for the doctor and/or an OT, and also the patient, to identify things that can be done to reduce the impact of OI. These might include sitting or lying down immediately after a shower, having a shower stool, planning to shop at times when queues are less likely and allowing long exams to be done while lying down.
    What do you think? Are there other points?
     
  8. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    When I had the test done I had to stand for 30 minutes.
     
  9. obeat

    obeat Senior Member (Voting Rights)

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    Doctors and health professionals need to be educated to ask about SYMPTOMS of OI. I don't want them thinking that a test is necessary to PROVE it. What happened to good history taking?
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree with obeat. I think there is a continuing confusion about orthostatic intolerance, which is a symptom, not a condition or a process. It may be due to all sorts of haemodynamic or other causes in different people.

    And as far as I know nobody can know what to advise because nobody has done any trials. You cannot just assume that if OI is due to a fall in venous filling pressure that sitting or lying down is a good thing to recommend. It might feel better but the people are likely to do it anyway.

    My reading of the literature on this is that various 'expert' physicians like Rowe have claimed to know what to advise, but we cannot know what to advise until trials have been done to see if it improves things, rather than maybe making them worse in the long run.
     
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  11. Sasha

    Sasha Senior Member (Voting Rights)

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    I made myself permanently worse in a single day when I chose not to lie down in a situation where it was difficult to do so. I really pushed myself through it and I'm still paying for it nearly ten years later. I think we have to be as careful around this as around GET.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think this is why we need documentation from actometers to show consistent correlations between activity or posture and subsequent potential.

    The problem with individual observations of concurrence is that they do not give us reliable evidence of cause (as we say at least once a week). Maybe on the occasion you are referring to something made your illness worse and that precipitated a severe reaction to posture and similarly more severe reactions from then on. That would not mean that the actual holding of the posture was the cause of subsequent problems. It might be but it might not.
     
  13. Hutan

    Hutan Moderator Staff Member

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    I agree, which is what I was trying to get across above with this:
    But do we forget about the standing test altogether? Surely it can be helpful for proof in insurance claims? A test where something abnormal is identified can help a person with ME/CFS get support.

    I don't think what I've written is incompatible with orthostatic intolerance being a symptom. As lots of people have attested here, it can be difficult to pinpoint the symptom and name it. Doctors can help with that.

    I deliberately didn't suggest drug treatments. However, is there any evidence to suggest that doctors should not prescribe drugs commonly used for orthostatic intolerance to people with ME and orthostatic intolerance?)

    I think the things I suggested are reasonable. If you are dizzy in the shower, a stool or chair might prevent a fall and might reduce the time you spend after the shower feeling nauseous.

    My son would get himself out of the bath, wrap himself in a bath towel and lie on the bathroom floor for five minutes or so, cooling down, until he felt able to get up and carry on. I expect it stopped him from blacking out. It's probably useful for parents caring for a young person with ME to be able to name that, understand it and accommodate it. Naming it as 'orthostatic intolerance' rather than 'nearly blacking out after a hot bath' means that the understanding can be applied to more situations.

    If a person finds it hard to think well after an hour or so upright, then a three hour exam under normal conditions is not going to allow them to fairly show what they know. If people report that they start to feel really sick and go sweaty and pale when standing in a queue, then I don't think you need a trial to come up with a suggestion that they try to shop when there are no queues.

    Until there are trials, or a better understanding of the pathology, I don't think there's much of a downside to acknowledging the problems and finding low-risk ways to minimise their impact. That's not suggesting that people lie down all the time if they don't have to.
     
    Last edited: Apr 29, 2019
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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    I think we do need those studies - and in order to do them, we need something that patients already need to monitor their OI, which would be something like a Fitbit but that you could strap to your ankle or trunk to show when you were reclining.

    My illness was stable at the time but I was trying to help out in an emergency and pushed myself hard in order to do so. I realise that this kind of anecdote can't be convincing to others, though.
     
  15. Trish

    Trish Moderator Staff Member

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    Well, you completely convince me! But I do take the scientific point also that any anecdote is not sufficient on its own to prove cause and effect.
    .....................

    Here's my experience with OI. I reckon I have two sorts
    - going light headed when standing or sitting with legs down, and a proneness to occasional fainting if I try to stay upright for too long, especially when combined with stressful situations. But not bad enough to be diagnosed as POTS perhaps.
    - rapid muscle fatiguability that means my legs will give way after standing or walking for more than a few minutes not related to deconditioning since it was there from the start when I was fit, though made worse now by years of illness so I am deconditioned as well.

    For the first of these, I think raising the head of the bed (that I did for hiatus hernia and reflux) has made me less dizzy on sitting up. I don't have scientific evidence of this for myself, but I have just found this paper which is interesting:
    Head-up sleeping improves orthostatic tolerance in patients with syncope. by Cooper and Hainsworth, 2008.

     
  16. Sasha

    Sasha Senior Member (Voting Rights)

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    I tried this myself for three months but it didn't help - but as you say, it helps for some, apparently. I think we had a thread on this in the other place.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    One of the confusing things about all this is that POTS is in a sense the opposite of fainting. In a traditional faint due to vagal discharge the heart rate is low rather than high.
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Drugs for treating OI assume a specific cause, like low blood volume or abnormal autonomic response (not both). I am a bit doubtful that their use in any situation other than something like Addison's disease is well validated. Since we do not know the cause of OI in an individual ME patient I don't think there can be be any justification for using 'OI' drugs without more information. They might well make things worse.

    But does it? Do we have any understanding that allows that? I know some physicians like to give that impression but I have not seen the basis of it yet.

    I very much agree that doctors ought to listen enough to get to know the patterns of symptoms that people have and what they find helps. The difficulty comes when they start thinking they know what is 'medically advisable' in the sense of known long term benefit based on understood mechanisms. But I can see that you were not necessarily suggesting crossing that line.
     
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  19. strategist

    strategist Senior Member (Voting Rights)

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    I was offered a dug to treat POTS but declined because it seems that drinking a lot of salt water, compression socks and paying more attention to avoiding excessive orthostatic stress is enough to bring symptoms down to a bearable level. Also because the drug hasn't even been tested for POTS. From memory, there was little to no evidence for most treatments being given to POTS patients. Also, I thought that the drug seemed to be targeting the wrong thing: heart rate, which I think is just a consequence of some failure elsewhere. I can feel the blood pooling when standing up. It feels like some weight shifts down into my legs. That is probably much closer to the root of the problem.
     
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  20. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Not if patients don't even know that standing still might be contributing to certain symptoms.

    I admit that I was clueless. It never occurred to me to *avoid* standing ( see my earlier post on this thread - https://www.s4me.info/threads/orthostatic-intolerance.8975/page-6#post-158730 ).

    Only after I fainted on the tilt table test did I realize that several of my symptoms (nausea, dizziness, lightheadedness) were not coming on completely at random. The same symptoms that I got on the tilt table test right before I fainted were the symptoms I had been getting for a few years. I did not know that they were often made worse by standing, or by sitting upright and not moving for a long time, such as sitting at the computer coding.

    Changing the subject slightly, do you think autonomic testing has any value? I'm not talking about testing for ME patients but just in general?

    For example, do you think the tilt table test (just the passive testing, no injection of isoproterenol, etc) shows abnormalities in the autonomic system? Or is there still not enough evidence to prove that a tilt table test can show any abnormalities?

    Perhaps there is a school of thought that the tilt table test is not a valid test?

    I'm sure I'm not asking these questions using the correct medical terminology but I hope you will answer. Thanks!
     

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