Orthostatic intolerance

[Sasha]

This is definitely nonsense, @Sasha. Moreover, it seems to be the opposite of what he said before. I am afraid I don't take Cort's interpretation of science seriously. I am also pretty sceptical about Nancy Klimas's statements if they are like the bit she says in Unrest. If anybody has found anything substantive about the immune system in ME it should be there in the published literature to see and it isn't.

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.

 

[Trish]

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.

 

[Hoopoe]

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."

 

[lansbergen]

Okay you did your thing, now you must rest."

Nature knows best.

 

[Jonathan Edwards]

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.

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.

 

[Hutan]

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.

 

[Hutan]

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

"Orthostatic vital signs—measured by taking heart rate and blood pressure in supine, sitting, and standing positions—often are measured within 2 minutes or less, and thus are insufficient to identify most forms of chronic orthostatic intolerance. Prolonged testing of at least 10 minutes usually is needed for a sufficient orthostatic challenge."

...

The recommended duration of upright posture for detecting POTS is 10 minutes (Raj, 2013). Although neurally mediated hypotension can occur within the first 10 minutes of upright posture, an orthostatic stress of more than 10 minutes of upright posture more commonly is required (Benditt et al., 1991). The median time to develop hypotension among adults with ME/CFS is 30 minutes in some studies (Bou-Holaigah et al., 1995).

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.

• Guidelines for an Orthostatic Intolerance test are here: http://batemanhornecenter.org/assess-orthostatic-intolerance/

• 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?

 

[TigerLilea]

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).

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

 

[obeat]

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?

 

[Jonathan Edwards]

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.

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.

 

[Sasha]

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.

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.

 

[Jonathan Edwards]

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 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.

 

[Hutan]

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?

I agree, which is what I was trying to get across above with this:

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

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 agree with obeat. I think there is a continuing confusion about orthostatic intolerance, which is a symptom, not a condition or a process.

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.

And as far as I know nobody can know what to advise because nobody has done any trials.

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.

 

[Sasha]

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

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.

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.

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.

 

[Trish]

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.

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.

Abstract
OBJECTIVES:
This study was designed to examine the effect of head-up sleeping as a treatment for vasovagal syncope in otherwise healthy patients. Treatment for syncope is difficult. Pharmacological treatments have potential side effects and, although other non-pharmacological treatments such as salt and fluid loading often help, in some cases they may be ineffective or unsuitable. Head-up sleeping may provide an alternative treatment.

METHODS:
Twelve patients had a diagnosis of vasovagal syncope based both on the history and on early pre-syncope during a test of head-up tilting and graded lower body suction. They then underwent a period of 3-4 months of sleeping with the head-end of their bed raised by 10 degrees , after which orthostatic tolerance (time to pre-syncope during tilt test) was reassessed.

RESULTS:
Eleven patients (92%) showed a significant improvement in orthostatic tolerance (time to pre-syncope increased by 2 minutes or more). Plasma volume was assessed in eight patients and was found to show a significant increase (P < 0.05, Wilcoxon signed-rank test). There was no significant change in either resting or tilted heart rate or blood pressure after head-up sleeping.

INTERPRETATION:
Head-up sleeping is a simple, non-pharmacological treatment which is effective in the majority of patients. However, it may not be tolerated by patients or bed-partners long term and whether the effects continue after cessation of treatment remains to be determined.

 

[Sasha]

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.

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.

 

[Jonathan Edwards]

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.

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.

 

[Jonathan Edwards]

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?

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.

Naming it as 'orthostatic intolerance' rather than 'nearly blacking out after a hot bath' means that the understanding can be applied to more situations.

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 think the things I suggested are reasonable.

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.

 

[Hoopoe]

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.

 

[ahimsa]

It might feel better but the people are likely to do it anyway.

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!