Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

[It's M.E. Linda]

From the Stakeholders meeting of NICE:-

From what I have heard the orthostatic intolerance in ME/CFS is probably mostly not POTS.

That's interesting. What makes you think this? My sense is the opposite, that many pwME/CFS have POTS (diagnosed or undiagnosed). In terms of the previous point about doctors not being comfortable with not having anything they can do, managing POTS symptoms (heck, even diagnosing them using something simple like the NASA Lean Test) is a something tangible which doctors can focus on, and which would improve the quality of lives of patients. Plus, there are clinical trials for POTS treatments (though I'm not sure if there are any in ME/CFS), so NICE could at least draw on that evidence-base in its recommendations.

@Valentijn or others may know more about this. My understanding from the discussions we have had and studies quoted is that most orthostatic intolerance in ME/CFS when studied has not conformed to POTS but falls into other categories such as neurally mediated hypotension. The claim that POTS is common in ME/CFS is widespread but so many things like that in this field are not based on good data collection. In many cases myths are perpetuated by physicians without any real physiological training.

I think the disagreement here is largely semantics. NMH and similar are much more common in ME patients than POTS, according to the research, but patients use "POTS" to mean all orthostatic intolerance. POTS is a nice easy acronym, and more people have heard of it - but it's still wrong. Using the proper terminology is extremely relevant when dealing with practitioners or agencies, especially if nitpicking assholes are involved who'd love an excuse to dismiss and ridicule patients .

Tilt table testing for OI is a good move. Information on good stretching exercises will help as muscles can get really bad if not maintained in some small way.

Very interested in this topic of "OI in PwME" (from recent experience) but will take it away to another thread in Symptoms

So, my experience from 2017.

I asked my GP to refer me for a tilt table test as I have had varying symptoms when standing, climbing stairs, any uphill walk (not exactly hills, you understand, but we do live on a slope and I do walk a slow dog and me 'around the block' 3/4 times a week). The symptoms have varied from almost fainting to needing to sit to rising temperature, racing heart, wobbling.

I saw the Consultant, had the tilt table and a follow up review. Despite the letter saying I "was well on leaving", my 86 yo mother had to escort me out to father's car. I had been unable to speak to her for 5-10 mins when out from the tilt table test & still could not speak properly/word find for at least an hour afterwards. I had many symptoms whilst on the table (see letter in file) and yet Consultant found 'dysautonomia is not the cause of her symptoms'.

Partner and Dr were both surprised at my reaction to the news (cried) when I had had the good news that my heart is fit and well .

Another thing to put on my 'to do' list - persevere with investigations.

 

[Mattie]

As I understand it many people with ME also have a confirmed POTS diagnosis.

When I got very sick in 01-2016 the first specialist I saw was a professor in cardiology because I had measured POTS myself. He is a POTS specialist and one of the few ME specialists in the Netherlands.

My own measurements were:
Supine: 60 BPM -> stand up: 120-130 BPM. Every single time. Took measurements for a week, many times a day.

POTS was confirmed with Tilt Table Test. Not NMH.

I have never ever crashed so hard as the next day after the TTT. It wiped me out for months!

My cardiologist confirmed I definitely have POTS and he was the first to diagnose me with ME. Later confirmed by 2 other doctors.

I would not recommend tilt table test for people with ME. As apparently it can cause severe PEM. Poor man's Tilt Table Test may be enough to diagnose POTS.

Poor Man’s Tilt Table Test
1. Lay on your back for 5 minutes and be as still as possible. While still laying down, take pulse and write it down.

2. Stand up, and stand as still as possible for 2 minutes without leaning. Take pulse while still standing. You can repeat pulse evaluations every 2 minutes until standing for 10 minutes.

POTS can be diagnosed a couple of ways:

If the heart rate is greater than 120 beats per minute at any point while standing, POTS might be indicated.

Adults age > 19, an increase in heart rate of 30 beats per minute or more between laying and standing may indicate POTS.

Children and teens age <19, an increase in heart rate of of 40 bpm or more when standing, it may be POTS.

You can use the Stand Test for POTS app to track changes in heart rate during this test. If you have an automatic blood pressure cuff at home, you can use it to monitor blood pressure and pulse for you. In many POTS patients, there will be a decrease in blood pressure by up to 20/10 mmHg when standing.

If after the Poor Man’s Tilt Table Test you still suspect POTS, please contact an autonomic specialist. You need to find a doctor who is a specialist in the autonomic nervous system, which is the system affected by POTS. Most autonomic specialists are either neurologists or cardiologists, but not all of them are familiar with POTS. Look for a neurologist or cardiologist who specializes in POTS.

 

[ahimsa]

I asked my GP to refer me for a tilt table test as I have had varying symptoms when standing, climbing stairs, any uphill walk...
I saw the Consultant, had the tilt table and a follow up review. Despite the letter saying I "was well on leaving", my 86 yo mother had to escort me out to father's car. I had been unable to speak to her for 5-10 mins when out from the tilt table test & still could not speak properly/word find for at least an hour afterwards. I had many symptoms whilst on the table (see letter in file) and yet Consultant found 'dysautonomia is not the cause of her symptoms'

Hi @It's M.E. Linda

I don't know whether this is helpful but here's my experience. I have had two tilt table tests, one in 1995 and the other in 2003.

Both tests found Neurally Mediated Hypotension (NMH). With just the tilt (no isoproterenol) my blood pressure plummeted to something unmeasurable and I passed out. On the 1995 tilt test this happened somewhere around 20 minutes (I'd have to look up the exact number).

On the 2003 tilt test, which was done as part of LTD (long term disability) insurance testing, I passed out somewhere shortly after 30 minutes.

Anyway, if my second test had been stopped at 20 minutes, before I passed out, then I might have had a result similar to yours.

This makes me wonder whether you might have gotten a different result if your test had lasted another 10-20 minutes? Years ago (it might have changed) the Johns Hopkins recommendation was that the tilt should last for 45 minutes.

Also, I thought that these days there were additional measurements that doctors could do to detect problems without the patient having to pass out to show NMH? So I'm kind of wondering at the idea that your test was deemed 100% normal even though you were having all sorts of symptoms? That sounds a bit strange to me.

I agree with @Mattie that the tilt table test can cause PEM. For me the crash was a couple of weeks, not months, but this varies from person to person. Anyone considering a tilt table test should keep that in mind. I would not have done the second test if it were not part of disability insurance testing.

My understanding is that POTS can often be diagnosed with a standing test but that NMH is harder, if not impossible, to diagnose just by standing.

Also, the Batement Horne Center is doing research on the "NASA 10 minute lean test" which might be a good option for some (less expensive than a tilt table test):

https://batemanhornecenter.org/learned-from-the-nasa-10-minute-lean-test/

https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

There are so many new things that have been learned since my tilt tests so please take this all with a grain of salt. (pun intended ... where's the salt shaker emoji? )

 

[MErmaid]

There are so many new things that have been learned since my tilt tests so please take this all with a grain of salt. (pun intended ... where's the salt shaker emoji? )

I can’t offer you a “salt shaker” emoji, but this emoji is tagged as “Dizzy”



And this emoji is tagged as “levitate”



So maybe, the best description for OI/NMH/POTS is

 

[It's M.E. Linda]

This makes me wonder whether you might have gotten a different result if your test had lasted another 10-20 minutes? Years ago (it might have changed) the Johns Hopkins recommendation was that the tilt should last for 45 minutes.

Thank you for telling me of your experiences.

Exactly.

I requested the stop because I was in so much discomfort. Talk about wanting to be in control, my body was telling me to stop.

I realise now that I shouldn't have even wriggled my toes (which I had started to do, right near the start of the test). That's what I do (and move foot to foot) if I have to stand in any queue or waiting.

So annoying because now I have a 'no problem' result on my record.

I did give the Consultant a copy of my diary entry regarding the tilt test - very embarrassing & emotional, written up the following day, shows PEM suffered - which should be on the hospital file - or perhaps filed in the bin?!

 

[Inara]

For those who have that problem - do you have suggestions for treatment? It seems I have developped POTS (or whatever name there is for > 30bpm after standing a few minutes) although on good days I don't seem to have the problem. I hope.

 

[Pechius]

If you have a look at the lecture from Bateman Horne Center on POTS, presenter clearly says that he thinks it's possible to have POTS without tachyvardia. I think that it's very likely a case in many ME patients.
POTS is a trap becaue if you don't have positive results then once again doctor will tell you that you're fine, and I'm willing to bet there's not a single person with ME without orthostatic intolerance.

 

[Melanie]

I fainted on my Tilt Table test years ago. I had low normal BP, 110/70. My Primary gave me the test and I did not understand why but years ago the research did show that we had OI issues and doing a Tilt Table test was a recommendation; I tripped over the research years later. But they didn't offer any information on how to treat and so my doctor just recommended eating salt.

Then my BP dropped lower and lower throughout the years and then it went down to 80/50 and just sat there. Now I am on Fludrocortisone.

 

[Forbin]

I wonder what it is when your vision "greys out" like TV static, or goes totally black for a few moments upon standing or rising from deep crouching position.

I had this during most of my teen years, but it had pretty much gone away before I got ME in my early twenties. It must have been from too little blood/oxygen getting to the brain upon rising. Oddly, this kind of episode never made me dizzy, but ME sure did.

 

[It's M.E. Linda]

POTS is a trap becaue if you don't have positive results then once again doctor will tell you that you're fine, and I'm willing to bet there's not a single person with ME without orthostatic intolerance.

Exactly, I now have a Consultant’s report on my file which says that I have “no problem” !

 

[WillowJ]

I wonder what it is when your vision "greys out" like TV static, or goes totally black for a few moments upon standing or rising from deep crouching position.

I had this during most of my teen years, but it had pretty much gone away before I got ME in my early twenties. It must have been from too little blood/oxygen getting to the brain upon rising. Oddly, this kind of episode never made me dizzy, but ME sure did.

Informally this is known as “head rush,” but formally it’s called OI.
http://www.wisegeekhealth.com/what-is-a-head-rush.htm

 

[Wyndigo]

Although the term pots is a catchy coverall and easy to say it isn’t accurate. The new nice guidelines referred to specialists in orthostatic intolerance although it seems most doctors don’t even know it exists. OI is an inclusive term pots isn’t.

 

[DokaGirl]

As I understand it many people with ME also have a confirmed POTS diagnosis.

When I got very sick in 01-2016 the first specialist I saw was a professor in cardiology because I had measured POTS myself. He is a POTS specialist and one of the few ME specialists in the Netherlands.

My own measurements were:
Supine: 60 BPM -> stand up: 120-130 BPM. Every single time. Took measurements for a week, many times a day.

POTS was confirmed with Tilt Table Test. Not NMH.

I have never ever crashed so hard as the next day after the TTT. It wiped me out for months!

My cardiologist confirmed I definitely have POTS and he was the first to diagnose me with ME. Later confirmed by 2 other doctors.

I would not recommend tilt table test for people with ME. As apparently it can cause severe PEM. Poor man's Tilt Table Test may be enough to diagnose POTS.

Thanks for this @Mattie.

You can also diagnose POTS with a Holter monitor.

The physician asks the patient to keep a diary of activities while wearing the Holter monitor. The patient can record the time at which they start being supine, then a few minutes after the supine position, the time at which they are standing up very still. The heart rates standing versus the heart rates supine can be noted by physician doing the interpreting, and may reveal POTS. Repetitions of this may give the interpretation physician and others more data to be able to confirm POTS.
Always make sure to be safe in case of fainting, or lightheadedness. Having a spotter or two is a good precaution.

 

[Dakota15]

Posts have been moved from a thread on the NIH ME/CFS intramural study

@Laurie P the 4 patients that I know in the study all have POTS and said it indicated as such on the TTT testing in the study

 

[EndME]

Jeannette said:

But the issue wasn't that they didn't find POTS in the patients. The issue is that the healthy controls also had POTS.

I think we have to be careful with such assessments.

I might have missed it or forgotten about it already, but I don't think there is any evidence to suggest that any of the healthy controls have POTS. They might have POT or at least show the same measurement values when undergoing a TTT, but all this shows me is that a TTT and measuring blood pressure and heart rate are not meaningful ways of separating POTS from POT or separating someone who suffers from orthostatic intolerance from someone who doesn't. If the healthy controls have no symptoms of orthostatic intolerance, I believe the NIH study has in fact shown that many of our models of POTS in ME/CFS are rather inadequate.

Notably some of the POTS literature seems to have started of in papers that use a similar language as the intramural study with one of the first descriptions of POTS being "effort syndrome".

 

[Jonathan Edwards]

I think we have to be careful with such assessments.

I agree. I was thinking of writing almost exactly the same post.

So far nobody seems to have worked out a plausible mechanism of origin for POT. It isn't just autonomic failure. It is very unclear to me where it is supposed to start off. I suspect it may not be a very good way of categorising things especially in the context of ME/CFS. NIH may have confirmed a sound suspicion that OI in ME/CFS isn't usefully classified that way.

 

[Jonathan Edwards]

Preload failure (technically low filling pressure, since the problem is not heart failure) due to impaired venous return. POTS is a compensatory adaptation to orthostatic hypotension so you don't faint.

Yes, but what would be the mechanism of origin?
Why would you get preload failure in the context? Maybe some selective autonomic defect, but as far as I know nobody has suggested what or why.

And in a way it cannot simply be preload failure because if that was the cause there should be a fall in blood pressure. It seems that blood pressure is maintained. Yet there are symptoms suggestive of cerebral underperfusion - presumably indicating constriction of cerebral vessels preventing the normal blood pressure perfusing the brain. I don't think there is any good account of why that should be, is there?

 

[ME/CFS Skeptic]

This paper looks to be important for the origin of the concept POTS:

Schondorf and Low labeled the condition “idiopathic postural orthostatic tachycardia syndrome” in a series of adults, suggesting the cause was “a mild form of an acute autonomic neuropathy”

Schondorf R, Low PA (1993) Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia? Neurology 43(1):132–137. https://doi.org/10.1212/wnl. 43.1_part_1.132

Unfortunately, I cannot access the full text of the paper.

 

[ME/CFS Skeptic]

But the issue wasn't that they didn't find POTS in the patients. The issue is that the healthy controls also had POTS.

The supplementary file gives the following data (my bolding):

Head-up tilt table testing at 70 degrees from horizontal for up to 40 minutes was performed during which finger blood pressure (BP) was monitored continuously and upper arm blood pressure measured with a cuff every four minutes. Orthostatic BP decreases of ≥ 20 mmHg were similar for both groups (PI-ME/CFS=9/16, HV=7/17). The frequencies of excessive orthostatic tachycardia at 10 minutes also did not differ (PI-ME/CFS=6/16, HV=3/17)2. The occurrences of symptoms by 40 minutes did not differ between groups (PI-ME/CFS=7/16, 357 HV=7/17).
​

So that is 37.5% in patients versus 17.6% in controls. The difference was there but it was not statistically significant because of the low sample size.

 

[Jonathan Edwards]

Blood pooling in lower body due to neurovascular dysregulation/small fiber neuropathy/endothelial dysfunction.

Which in turn may be caused by autoantibodies.

And what evidence do we have for that?
And how do we explain the cerebral symptoms with normal blood pressure if that is the case?

'Neurovascular dysregulation' is hand-waving if you don't mind me saying so!
I don't see any evidence of autoantibodies.
And IVIg is pretty useless at the best of times even when there are autoantibodies. Without a blinded controlled trial I wouldn't bother to read the paper to be honest.