Orthostatic intolerance

@lunarainbows a friend with POTs (and ME) told me that she didn't feel the need to lie down frequently or feel unwell from being upright like I did. It's so complicated.

 

Yes I do wonder weather there's lots of subtypes and groups even within the banner of me and pots. I do wish pots was studied more!

 

As pots is a form of orthostatic intolerance. I told my symptoms to my cardiologist and said I feel much better lying down, and much worse sitting up as well as other symptoms. And that's what led him to investigate me for pots and tachycardia conditions.

I think it would help so many people if there was something in the nice guidelines about tachycardia, pots, and referring people to cardiologists will or pots clinics to get it checked out. It's a small thing that can make a big difference. Especially people are referred early on in the illness.

I always find it extraordinary that Dr. Bansal at Saint Helier would see people without even talking about tachycardia, and without referring anyone to a cardiologist, despite the fact that a PoTS specialist works at the very same hospital and knows him very well, and in fact the cardiologist ends up seeing many of these people, but only if they find out about it themselves and refer themselves! PoTS, inappropriate sinus tachycardia, etc is not Fringe medicine. It's easy enough to measure heart rate and blood pressure on a tilt table test or indeed other measures like I had. But I only found out about pots a long time after I got ill.

 

After mentioning it on one of our PoTS threads a month or so ago, I’m definitely noticing worsening PoTS when I’m resting after activity/being out.

I’ve been checking my watch to see when it’s at its most prevalent and it’s during the first few hours after activity when I’m completely resting and even when I’m half lying down.

It’s before the PEM kicks in (or the obvious PEM at least) I don’t know if it stops when the PEM starts, as I’m either too ill to remember to check or I’m stuck in horizontal so it doesn’t show anyway.

But the hours straight after physical activity when resting are really noticeable.

 

https://www.youtube.com/watch?v=X3Ym8rnYk_4

 

Thanks! I went to the Bateman Horne Center YouTube channel and found the video "What is Orthostatic Intolerance? Part 2" so I thought I'd post it here:

https://www.youtube.com/watch?v=GIkS4w3tIg8

(I have not yet watched either video, probably will be a while before I do)

 

This is worse in the morning for me. Is there an explanation as to why that is?

 

I have a vague memory that one factor (depending on type of Orthostatic Intolerance, there are probably a lot of factors) is getting somewhat dehydrated overnight - more water in bladder, less water in blood vessels.

 

Thread merged with posts from Response to Michael Sharpe letter, Rowe, 2019

Hm, I wonder how good the evidence of Rowe's points is?

"orthostatic intolerance as a contributor to symptoms, despite 25 years of evidence that it is one of the most common and most treatable components of the illness"

Is there evidence that orthostatic intolerance is treatable? (Instead of needing to adapt to the need to lying down and manage it/ being in a recliner-style position when it occurs or to prevent it?)

 

It may depend on severity but there are a variety of meds that appear to improve function . Beta blockers seem to be the go - to for initial treatments, with others if these don't work out.

I know of a teen whose life was transformed by POTS meds as it seemed io be a huge component of his illness

 

Yes, there are randomised controlled trials showing the value of drugs like pyridostigmine & ivabradine in OI patients.

From memory these trials have all had POTS cohorts and not ME/CFS, but there'll be a significant overlap and for many the difference in classification/diagnosis will just be which doctor you were lucky/unlucky enough to see first.

 

Thanks for the replies.

I'm afraid I remain skeptical. Is there evidence about the huge overlap?

I know for sure that my OI isn't POTS. It doesn't seem to be mediated by blood pressure either. So would really be interested to know about reliable studies of OI in the broad sense of a reduced ability to remain an upright position (sitting with back in 90° position, standing, walking) in ME.

Edited to add: But perhaps I don't even have OI but only abnormal 'orthostatic fatigability'?

 

Sorry to take this off thread- mods move elsewhere if appropriate.

On the Facebook page for Dr Myhill ' s supporters there is one lady who has being doing a vagus nerve experiment with an adapted tens machine ( based on the Australian project) .

She has had ME for 28 years with no improvements ( only deterioration) and has significant OI issues.
The process has improved her OI significantly. It will be interesting to see if it continues.

 

Copied post

Only able to skim ATM so apologies if I can't substantiate my concerns with regard to highlighting Rowe's response to MS.

We have discussed the evidence for similar claims and how to deal with them on this thread (currently members only), see this post. (*)

What @Esther12 quoted from Sharpe's letter is appalling.

Also, Rowe surely is right to criticize Sharpe for his ongoing defense and references to the PACE trial .

When referencing Sharpes' responses, @Tom Kindlon, I just would like to caution against highlighting Rowe's claims about biomedical findings in ME, also about circulatory abnormalities.

If I remember correctly, you'll also find some rigorous criticism about papers on OI and POTS, including papers by Rowe, on the forum.

@Snow Leopard @beverlyhills

(*) Edit: The linked post is not about OI but about the 2-days-CPET findings, so just an example of how results of biomedical research on ME commonly are misinterpreted -- and maybe often by the researchers themselves.

 

I don't remember this, but would be interested in seeing these criticisms.

 

Not able to search now, sorry, @dave30th -- here is only one I bookmarked:

https://www.s4me.info/threads/reduc...020-van-campen-rowe-visser.17230/#post-294113

 

I don't remember the detail either but I think @MSEsperanza is right to question the helpfulness of Peter Rowe going on about cardiovascular abnormalities. Last time I considered this it seemed to me that the evidence for any specific cardiovascular cause of orthostatic intolerance was very weak. Orthostatic intolerance just means not being able to stand up because you feel unwell. I strongly suspect in ME it is largely independent of any changes in heart rate or blood pressure.

I don't think we have any valid data on benefit from pharmacological therapy for OI in ME. I am extremely dubious about the use of saline, which makes no physiological sense and I seem to r4member Rowe was involved in a trial of it maybe. He certainly seems to think it is good value.

I think Rowe is no real friend of scientific advocacy for ME. He seems to accept a lot of weak evidence from clinical observation and he was at least partly responsible for the whole EDS business. We need reliable data and valid interpretation. Rowe's own comment could easily be used back on him I fear:

Believing intensely in one’s own conceptual model of an illness is natural, but if we ignore observations that challenge that model, then we have moved beyond the realm of science into the realm of theology.

 

ME has always had dysautonomia as a symptom and POTS and OI are just aspects of that.

 

Dysautonomia is not a symptom, it is a suggested explanation for some symptoms. I am far from convinced that it is well grounded. Even if there are haemodynamic changes during OI as to whether they qualify as 'dysautonomia' is a moot point. In a sense POTS is a sign that the autonomic system is working well - there is a tachycardia response to something. If the autonomic system fails you get no response.

 

I just did a very quick search and it seems that some criticism unfortunately isn't made in the threads dealing with the papers but in other threads.

It's also possible that my memory exaggerates the criticism.

But here is another one, by Michiel:
https://www.s4me.info/threads/cereb...an-campen-et-al-2020.13583/page-5#post-238377