Orthostatic intolerance

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.

 

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."

 

Nature knows best.

 

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.

 

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

 

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 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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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!