POTS - definition, diagnosis and symptoms

[duncan]

Moderator note: This post has been copied and following posts moved from this thread: Concerns about craniocervical instability surgery in ME/CFS
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Large numbers of patients attend clinics believing they have EDS, POTS and MCAS with no evidence that they have any of these.

Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and or/BP change requirements to qualify for a POTS diagnosis. I seem to remember that there are tests for MCAS as well, but I could be wrong; my memory is suspect.

But I'm pretty confident about the POTS thing. So why claim that there are large numbers of POTS patients with no evidence of POTS? This strikes me as similar to the myth being promulgated by a cluster of old-time TBD researchers that most patients claiming to have persistent Lyme never had evidence of Lyme in the first place.

 

[JES]

Yep, POTS is typically defined as an increase of heartbeat of over 30 beats per minute when moving from lying to standing position. I was met with complete ignorance from hospital doctors when I suffered from debilitating POTS symptoms a couple of years ago. Having POTS alone can cause severe disability just like PEM. At my worst, I couldn't even sit for long enough to travel short distances. POTS was and still is a bigger issue for me than any other ME/CFS symptoms. Most doctors consider POTS psychological or irrelevant in my country, just like ME/CFS. The only advice the hospital cardiologist gave me was that I needed to sit down if I felt worse. Well, thanks.

 

[TiredSam]

Large numbers of patients attend clinics believing they have EDS, POTS and MCAS with no evidence that they have any of these.

So why claim that there are large numbers of POTS patients with no evidence of POTS?

I have attended two clinics believing I may have POTS, my evidence being what I had read on forums as a new patient and my observations using a heart rate monitor. Turns out I didn't really have evidence and I don't have POTS.

 

[sb4]

I have attended two clinics believing I may have POTS, my evidence being what I had read on forums as a new patient and my observations using a heart rate monitor. Turns out I didn't really have evidence and I don't have POTS.

What where your observations with the heart rate monitor and what test did they used to show you don't have POTS?

 

[TiredSam]

What where your observations with the heart rate monitor and what test did they used to show you don't have POTS?

In the early stages of ME, when standing up, my heart rate would sometimes shoot up to 120 and I'd feel very "wobbly". At the charite in Berlin where I got my diagnosis of ME, this is from my blog:

It was time to stand up and have my blood pressure and pulse measured. I had told Dr Hanitsch that at rest my pulse was around 50, and that when I stood up it shot up to 100 or more, so was looking forward to demonstrating it, but unfortunately the machine showed my sitting pulse at 69 and my standing pulse at 93, which wasn’t nearly as dramatic as I had hoped. It was then measured again 5 times at 2 minute intervals, where it settled back down to around 83. My blood pressure seemed normal.

https://forums.phoenixrising.me/blog-articles/trip-to-the-charite-in-berlin-part-7.1960/

At a later date I had a real tilt-table test, which confirmed that I didn't have POTS.

 

[sb4]

In the early stages of ME, when standing up, my heart rate would sometimes shoot up to 120 and I'd feel very "wobbly". At the charite in Berlin where I got my diagnosis of ME, this is from my blog:



https://forums.phoenixrising.me/blog-articles/trip-to-the-charite-in-berlin-part-7.1960/

At a later date I had a real tilt-table test, which confirmed that I didn't have POTS.

So you no longer get this increase in heart rate?

The reason I ask is, when I was first ill I did not have POTS, as I got worse I noticed I had POTS and then had this confirmed via tilt table (twice, 3yrs ago). If I took the tilt table now I am certain I would no longer have POTS, yet I still have all the symptoms of autonomic dysfunction. My symptoms get significantly worse upon eating, when standing for moderate / long periods of time, when too warm, etc. Cold helps, and other vasoconstriction helps. Yet my HR no longer climbs as high as it did.

So I guess I don't have POTS anymore but I still have autonomic problems and I am certain and can confirm that when I get worse my POTS comes back. Ie HR climbs above 120 / by 30 over 10 mins etc.

The point I am making is if I went to a doctor now and complained of POTS, I would be classified as someone who decided I had POTS after messing around on the internet but in reality do not. Yet this really isn't the case as my POTS is just hidden until I get worse.

Furthermore the problem is that my other autonomic symptoms (aside from gastroparesis) have no real testing for, so it would be just waved away as I don't have this problem. How many others would be in this same position yet dismissed as trying for a designer diagnosis?

 

[TiredSam]

So you no longer get this increase in heart rate?

No, I don't. I have improved a lot over the last couple of years. My sitting HR is often 50-70 now, and when I stand up, it rarely goes over 100. I can walk a bit faster, and when my monitor beeps that my HR is 116 (the alarm goes if my HR goes over 102) I can ignore that for a couple of minutes without payback if I'm in a hurry. I used to be embarrased to be seen walking in public because I walked so slowly to keep my HR under 102. Now I look a bit more normal when walking along.

 

[It's M.E. Linda]

In the early stages of ME, when standing up, my heart rate would sometimes shoot up to 120 and I'd feel very "wobbly". At the charite in Berlin where I got my diagnosis of ME, this is from my blog:
https://forums.phoenixrising.me/blog-articles/trip-to-the-charite-in-berlin-part-7.1960/

At a later date I had a real tilt-table test, which confirmed that I didn't have POTS.

I, too, have had a Tilt Table Test which showed that I was negative for PoTS. However, I still suffered all the debilitating symptoms of some form of Orthostatic Intolerance whilst being tested on that Tilt Table.

https://www.s4me.info/threads/orthostatic-intolerance-in-pwme-pots-nmh.1976/

Discharged back to the GP by the Consultant and described in the letter as ‘interesting’ but not “interesting enough” for anyone else to look at me and try to help me with my symptoms!

P.S. I know to sit (or lie) down if I need to

 

[Mij]

My heart rate goes up when I have a virus or when my immune system is reacting to something.

 

[Anna H]

. My symptoms get significantly worse upon eating, when standing for moderate / long periods of time, when too warm, etc. Cold helps, and other vasoconstriction helps. Yet my HR no longer climbs as high as it did.

Same here, eating, standing, heat... I do not mind sitting and lying but eating, come on, that is just evil!
I have not had POTS confirmed with a tilt table test, but realise I probably would not be diagnosed, just like @TiredSam, I have assumed that have POTS based on symptoms, but maybe it would just pass as orthostatic intolerance. Seems like many may have "borderline" POTS.

 

[Hip]

At a later date I had a real tilt-table test, which confirmed that I didn't have POTS.

For diagnosing POTS, I understand that there is no significant difference between the tilt table test, and the active standing test (which people can easily perform at home). In either case, if your heart rate increases by 30 bpm or more on becoming vertical, you have POTS, by definition.

Thus if you originally performed the active standing test some years back, and had at least a 30 bpm increase in heart rate, then that would indicate you had POTS at the time.

If you now no longer get this ≥ 30 bpm increase in heart rate, then you may no longer have POTS.

The Wikipedia article says that if POTS is triggered by a viral infection (which will be the case in virally triggered ME/CFS), then 50% such cases get better just on their own within five years. So maybe you were one of these cases who got better over time.

 

[Hip]

I, too, have had a Tilt Table Test which showed that I was negative for PoTS. However, I still suffered all the debilitating symptoms of some form of Orthostatic Intolerance whilst being tested on that Tilt Table.

Were you also tested for neurally mediated hypotension (NMH) and orthostatic hypotension (OH) while on the tilt table? The Canadian consensus criteria describes 3 forms of orthostatic intolerance which commonly occurs in ME/CFS: POTS, NMH and OH. If you experience symptoms when becoming vertical, it could be due to any of these three.

 

[Hutan]

Here's my daily measurements for some months in 2017, 4 years after onset. The OI measure is increase in heart rate from supine to standing first thing in the morning, divided by 10 to make the scale fit. The health rating was 0=good; 1=ok; 2=not good, probably in bed from early afternoon and 3=terrible, in bed with PEM all day.

(I don't know what has happened with my excel - I used to be able to do a regression easily, the tools aren't in this version.) But clearly there's a relationship - match the threes and match the zeros of the green health rating with the peaks and troughs of the OI measure. The OI measure was objective, the health rating sort of subjective, but it was pretty clear what was a zero day and what was a three day and I was recording lots of stuff so I don't think the rating was influenced by the OI measure.

I probably would not have been diagnosed as having POTS at this time, although I did read that an increase of 28 (i.e. 2.8 in the chart above) was a suitable threshold for the test I was doing, which was free standing, not leaning. So, some mornings, I was over that and most mornings the OI measure was higher than is normal (ie in the 20 to 30 range).

However, there were odd things going on with heart rate and blood pressure. For example, I frequently had a high shock index (systolic BP/heart rate) and sometimes a narrow pulse pressure.

I was diagnosed with POTS earlier in the illness (2015? - two years after onset) by a cardiologist who thought exercise was the answer. I might have some measurements from that time somewhere - I think things were worse, but then I was trying to do a lot more then.

 

[Hutan]

Found the 2015 data and have put it in the chart here. So that's an 89 day sample.



The pattern is maybe harder to see here, but there were a lot more bad days in the first half of the sample and a lot more days of OI scores over 28.

I was trialling florinef in the first half of the sample (days 8 to 24), prescribed by the cardiologist for OI, under duress (he was under duress, he really was keen on the exercise and not keen on prescribing the florinef). But the florinef didn't make a blind bit of difference to how I felt (edit - actually I remember now that I thought it made me feel worse).

I trialled meloxicam from days 48 to 80, after having noticing that nurofen seemed to help. At the time, I didn't think it helped, although maybe it did something now that I look at it. What really helped I think is that I and my son gave up caring whether he got to school or not (ie so basically he didn't go and I didn't have to try to get him up and take him), and I gave up any pretence of trying to work.

Anyway, it would be nice if a proper study along these lines (OI vs global impression of ME/CFS symptoms or PEM was done. Maybe the various apps that seem to be under development will facilitate patient data gathering.

PS - I moved from a 3 level scale in 2015 to a 4 level scale for the health rating in 2017. So, for 2015 there aren't any 2's making things a bit harder to compare between the years, but a 3 was still 'out of action all day'.

 

[It's M.E. Linda]

Were you also tested for neurally mediated hypotension (NMH) and orthostatic hypotension (OH) while on the tilt table? The Canadian consensus criteria describes 3 forms of orthostatic intolerance which commonly occurs in ME/CFS: POTS, NMH and OH. If you experience symptoms when becoming vertical, it could be due to any of these three.

Thank you.

You made me have another look at the Consultant’s discharge letter (already out for another reason) - apparently

“ ....dysautonomia is not the cause of her symptoms. There was no evidence of PoTS, orthostatic hypotension or other condition.”

.......

“I have not planned to see her again”

so I presume NMH was tested? No idea!

Dismissed back to my hole (since 2017) to manage it by myself as best as I can.

i.e..do not remain standing for any time
put legs up as much as possible
walk when I can
Sit or lie down if I need to.

 

[unicorn7]

I was absolutely convinced I did not have orthostatic intolerance or POTS. I went to a (ME/CFS) cardiologist to rule it out (his research was presented on the NIH congres).

We did a table tilt test, WITH measurements of blood flow to the body and the brain (measurement of arterial vein diameter). Within three minutes of being upright, I felt very nauseous and light headed. My mum was shocked at how all the color drained out of my face. I was shocked because I thought that feeling was from doing too much, not from being upright. The measurements showed the blood flow to my brain was 33% less than lying down, normal is about 5-10% reduction. No POTS or anything, just an unspecific form of OI.

Apparently this is true in about 95% of ME/CFS patients, seems like an easy measurement to me?

 

[chrisb]

The issue of loss of colour to the face is a significant one. My recollection is that facial pallor was a feature of the Royal Free and Betty Scott's report on the subsequent general community outbreak. It is reported in sporadic cases. It would seem to suggest sudden circulatory problems but little seems to have been made of it.

 

[Hip]

so I presume NMH was tested? No idea!

Was a blood pressure cuff used during your tilt table test? To diagnose orthostatic hypotension on a tilt table, you need to measure blood pressure, and check for a drop in blood pressure soon after becoming vertical.

Whereas to diagnose POTS, it's the heart rate you measure. And to diagnose NMH, you have to stay upright on a tilt table for 30 to 45 minutes, to observe whether syncope (fainting or passing out) occurs.

 

[Jonathan Edwards]

Three points that we have discussed before may be worth mentioning.

Firstly, although I do not have the sources I am sure that in looking at this I found that it is recognised that some normal people show >30 bpm increase on standing and that this is not in itself diagnostic of 'POTS'.

Secondly, PWME often complain of orthostatic intolerance - feeling bad on standing - but studies seem to indicate that in a good proportion of cases and perhaps the great majority this does not fit with any finding of tachycardia at that time. It looks as if most OI in WME may be unrelated to 'POTS'.

Thirdly, and perhaps most importantly, a distinction needs to be made between POT (postural orthostatic tachycardia) and POTS (the putative syndrome). The problem for me is that POTS seems to consist of a vast range of symptoms that are not obviously relevant to POT which are diagnosed as POTS if the person happens to have POT. At least at the moment I am very unconvinced that anyone has properly documented a real syndrome of POTS. It sounds to Mme more like ME or fibromyalgia in people with POT.

A number of physicians who make diagnoses of this sort are people I know well as colleagues and friends. I am afraid that I am very unimpressed by the way they go about making diagnoses like POTS. Often it seems that if any hint of something suggestive of the diagnosis is enough for them to confidently claim that this is probably what is wrong.

In conclusion, although I think it very likely that there are people who get symptoms from tachycardia on standing I doubt there is such a thing as 'POTS' and I am pretty sceptical that any of this is relevant to ME/CFS. In contrast to the well organised and replicated studies on the demographics of ME/CFS I am not aware of anything meaningful in relation to POTS.

 

[It's M.E. Linda]

Was a blood pressure cuff used during your tilt table test? To diagnose orthostatic hypotension on a tilt table, you need to measure blood pressure, and check for a drop in blood pressure soon after becoming vertical.

Whereas to diagnose POTS, it's the heart rate you measure. And to diagnose NMH, you have to stay upright on a tilt table for 30 to 45 minutes, to observe whether syncope (fainting or passing out) occurs.

yes, blood pressure cuff and heart rate was monitored.

But, I only managed 20 mins on the table. I felt really poorly and asked to finish (was practising ‘giving birth breathing’ just to try to stay on there for as long a possible). The staff wanted me to sit up immediately after the table being lowered back to horizontal but the nurse had to go to fetch me water first as I couldn’t move.

I made diary notes as soon as I possibly could after the Appt and took them to the review with the Consultant. He read them out loud, laughed and made me feel dismissed. Not a happy experience.