Orthostatic intolerance

[Mithriel]

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 may be using the terminology wrong, it happens when you have to work out a disease for yourself without medical input. It would have been good to be able to discuss these things with someone knowledgeable fifty years ago!

Symptoms I experienced were considered a common part of ME when I was first diagnosed in 1984. Not being able to stand for long without feeling ill even forced to lie down was common which is like POTS or OI but there was also a problem with homeostasis. If I am hot I can't cool down and if I am cold it takes hours and hours to heat up without an external source of heat. When I was able I would take a hot bath and always had handwarmers in my handbag. Like many people I need to wear layers so I can adjust my temperature by outside means.

Other things like blood sugar don't seem well controlled either. It is always the same way, slow to react and keeping blood pressure just right appears to follow the same pattern.

True POTS where my heart rate went up to the 160 range after sitting upright for a few minutes has only happened in the last five years or so and I have found it is worse when I am warm so I can control it to a point.

 

[Jonathan Edwards]

Symptoms I experienced were considered a common part of ME when I was first diagnosed in 1984. Not being able to stand for long without feeling ill even forced to lie down was common which is like POTS or OI but there was also a problem with homeostasis. If I am hot I can't cool down and if I am cold it takes hours and hours to heat up without an external source of heat. When I was able I would take a hot bath and always had handwarmers in my handbag. Like many people I need to wear layers so I can adjust my temperature by outside means.

Yes, nobody is doubting that the symptoms, at least in a proportion. The problem is people who pretend that they can explain them, whether Sharpe or Rowe, when so far we don't have any clear idea how to for ME.

 

[Michelle]

Yes, nobody is doubting that the symptoms, at least in a proportion. The problem is people who pretend that they can explain them, whether Sharpe or Rowe, when so far we don't have any clear idea how to for ME.

I absolutely agree with this and @MSEsperanza 's skepticsm. By doggedly insisting on explaining OI through a hemodynamic lens, Rowe et. al are causing real harm to those of us with OI that is clearly not hemodynamically mediated because clinicians then retreat to the “anxiety” explanation (and refuse to make accommodations like providing a place to lay down because hey, your BP is fine!). Many of us have OI that is severe but is demonstrably NOT hemodynamically mediated. During the severe crash I had in October, my OI was absolutely unbearable within 20 minutes or so. But my blood pressure and HR were normal or even moderately hypertensive. My OI symptoms have improved in the ensuing months (though by no means resolved) but my blood pressure hasn't changed.

Moreover, by spending the last 30 years doggedly focused on OI as a hemodynamic phenomenon, it means they have not been able to consider other possible explanations for the OI problems (not that there are any that are obvious).

 

[dreampop]

Moreover, by spending the last 30 years doggedly focused on OI as a hemodynamic phenomenon, it means they have not been able to consider other possible explanations for the OI problems (not that there are any that are obvious).

But isn't that exactly what the Rowe/Visser paper is trying to do, to suggest OI may occur in patients when BP and HR have normal responses and that this may be due reduce cerebral blood flow? I understand the critcisims but there certainly seems to be a strong presence of OI in me/cfs that is hemodynamic as well, I can personally attest to that, as can many forum members.

I consider that OI is related to standing and heat makes it worse, I have seen numerous patients attest to their dread of the hot shower. I am convinced temperature plays a role in the OI in me/cfs, but that may just be in my case.

 

[Jonathan Edwards]

But isn't that exactly what the Rowe/Visser paper is trying to do, to suggest OI may occur in patients when BP and HR have normal responses and that this may be due reduce cerebral blood flow?

Rowe may be open to exploring further, but this is still a haemodynmic explanation. In fact ALL haemodynamic explanations of OI assume that the effect is through reduced cerebral blood flow as far as I am aware. A low BP affects you by reducing cerebral blood flow. A tachycardia is supposed to be a sign that the heart is responding to a detection of low cerebral blood flow. Trying to explain more cases as reduced cerebral flow even without pulse or BP changes seems very much sticking to one explanation.

Certainly some PWME show low BP or tachycardia but that still does not prove that the OI is due to these. It could easily be the other way around. The dreadful feeling of not being able to tolerate standing might lead to changes in haemodynamics - which is what happens when you faint after spraining your ankle or what happens when someone has been in bed a long time from an illness of any sort.

 

[Hoopoe]

I would like to know if the biomedically trained members can think of a way to connect a nonsense mutation of m-cadherin to orthostatic intolerance or ME/CFS.

 

[Hutan]

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.

We have a thread on vagus nerve stimulation.

 

[Kitty]

Certainly some PWME show low BP or tachycardia but that still does not prove that the OI is due to these. It could easily be the other way around.

It's also not unique to ME. Mine predates ME by years, and many of the numerous aunties and cousins on my mum's side of the family have OI. Quite a few of us were regular school assembly fainters in the days when you stood up throughout; as adults, we just feel ill, clammy and nauseous. As far as I know, I'm the only one with low blood pressure.

 

[Midnattsol]

A number of posts discussing the evidence for orthostatic intolerance in ME/CFS and potential treatments have been moved from the Response to Michael Sharpe letter, Rowe, 2019 thread.

 

[Hoopoe]

Is pressure in the head related to orthostatic intolerance? In my experience yes.

Why does it occur? Is it a cause or consequence of orthostatic intolerance (or low blood pressure)?

 

[DokaGirl]

Maybe it's the name 'orthostatic intolerance' for what's going on that's the problem - suggesting we only feel bad when upright. If in fact it's a circulatory problem, then we might also feel somewhat bad lying down.

And actually, being upright but walking might be fine, because the movement helps to move blood around. And, as @Ravn pointed out, often the times of standing might be combined with chatting with someone or standing in a queue in a noisy busy environment or have required physical and mental exertion to get to that place - so it is easy to attribute the 'feeling bad' to things other than the standing.

So, if we aren't feeling super lying down, and we feel ok-ish walking, and it's easy to find reasons other than being upright to explain why we feel bad standing or even sitting, then it's not surprising that we don't necessarily realise we have "orthostatic intolerance".

I had gradual onset ME, and recall the first time I noted standing bothered me was about 4 years on. I too didn't connect the upright position with feeling awful. I just thought I was tired, and needed to sit down.

When my ME got much worse, and the OI would kick in, even after laying down, I would feel terribly faint, and sick.

 

[Dx Revision Watch]

It's in the coding thread but I thought I should mention in this thread that there was a submission at the September 14-15, 2021 NCHS/CDC ICD-10-CM Coordination and Maintenance Committee Meeting for addition of the term: Postural orthostatic tachycardia syndrome to the ICD-10-CM Tabular List.

A request for creation of a specific code for POTS within the category G90 had been received from Jeffrey R. Boris, MD LLC, and Lauren Stiles, JD (Dysautonomia International and Research Assistant Professor of Neurology at Stony Brook University).


Day 2 (September 15):

https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

Agenda topic: Page 167: Postural orthostatic tachycardia syndrome (POTS)

David Berglund, MD
Jeffrey R. Boris, MD FACC FAAP
Pediatric Cardiologist Medical Advisory Board, Dysautonomia International

(Rationale for the request is on Page 167 of the Topic Packet)


PDF of Dr Boris's presentation slides: https://dxrevisionwatch.files.wordpress.com/2021/09/postural-orthostatic-tachycardia-syndrome.pdf

Day 2 Recording of Dr Boris's presentation and the discussion that followed:

https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

You will need to enter this Passcode: $E33^Cb@

POTS Topic begins at: 05:05:16 ends at 05:23:25

On the right of the audio and slides, you should see an auto scrolling transcript of the presentations. This contains some mis-transcriptions.



ICD-11:

The term, Postural orthostatic tachycardia syndrome (which is not listed in the WHO's ICD-10) has been included in ICD-11 since at least 2016:

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1533647472

8D89.2 Postural orthostatic tachycardia syndrome

 

[DokaGirl]

@Mithriel

Yes exactly this, as you said:

"...work out a disease for yourself without medical input."

I've had to do that for more than ME.

But I have gone off topic here.

If I had one wish to do with my health, it would be to eliminate the OI. It, and just it, let alone all the other ME symptoms, can greatly damage QOL.

 

[Leila]

I had gradual onset ME, and recall the first time I noted standing bothered me was about 4 years on. I too didn't connect the upright position with feeling awful. I just thought I was tired, and needed to sit down.

When my ME got much worse, and the OI would kick in, even after laying down, I would feel terribly faint, and sick.

I didn't know I had Orthostatic intolerance for years since I didn't know such thing existed. In the very beginning I said it feels like gravity had increased by 100 fold. The floor was sucking me in. In my head I was just "sick and weak" and only got a medical explanation years later with a tilt test.

I too find it a lot easier to walk than to stand, e.g. chatting with someone on the street or standing somewhere in line.

 

[DokaGirl]

I didn't know I had Orthostatic intolerance for years since I didn't know such thing existed. In the very beginning I said it feels like gravity had increased by 100 fold. The floor was sucking me in. In my head I was just "sick and weak" and only got a medical explanation years later with a tilt test.

I too find it a lot easier to walk than to stand, e.g. chatting with someone on the street or standing somewhere in line.

Yes, I seem to recall early on I felt pressed down upon, towards the floor. I developed ME in 1985. I didn't find much info on it, or CFS.

 

[Mij]

I still haven't figured out why OI is worse in the morning for me. I'm quite fine starting around 6pm. Perhaps it's something else that is causing the need to lie down more during the earlier hours?

 

[SNT Gatchaman]

I still haven't figured out why OI is worse in the morning for me.

Ditto and I think that's the common experience. The simplistic explanation I've seen given is that blood pressure is lower in the mornings, so cerebral blood flow may be more easily compromised. I think the van Campen et al demonstration of reduced CBF without tachycardia / hypotension in some patients is very interesting.

I had been prone (hah!) to postural symptoms since my teens. Getting up too quickly (esp. from a hot bath), or a shower saw me curling up on the bathroom floor, typically once a year. I got good at recognising the signs of fuzzing in the ears and dimming vision and learned to crouch down quickly. Maybe this is a predisposing factor. Now I have POTS, there will be no such warning time and I would just faint out with e.g. a vasovagal.

The last time this happened, I had a significant symptom flare. Not sure if I banged my head (not obvious) and fired off the activated glia, or whether significantly reducing CBF has the same effect.

 

[Trish]

I'm a fainter too if I get up too quickly or sit or stand for too long.

I have assumed it is because I spend the night horizontal, not drinking and creating urine. So on waking I have the double whammy of lower blood volume until I am fully rehydrated, and my blood flow having to adjust to being more upright.

I have found sleeping on a bit of a slope with head end raised, and on waking getting a drink and lying with my head end raised more helps.

 

[Mij]

I feel light headed from postural changes and my heart rate shoots up when I drink coffee in the morning. I don't feel faint, but have to get up slowly after lying down.

I read this which leads me to believe that I don't have low BP or might also have something else:
Caffeine is a widely available, inexpensive food constituent with few side effects or associations with poor health outcomes [6, 7]. It has vasoconstrictive properties through antagonism of adenosine receptors (A1, A2A and A2B) [8] and has been shown to modestly increase BP both acutely and in the longer term in healthy individuals [9]. Low-quality evidence indicates that caffeine is an effective treatment for postprandial hypotension, another common problem in patients with autonomic failure, potentially through inhibition of adenosine-driven splanchnic vasodilatation [10]. This has led to the hypothesis that caffeine may be helpful for people with nOH. Indeed, caffeine has consequently been recommended as a treatment for refractory nOH in the literature and in clinical practice, although there is no consensus regarding its efficacy

 

[Blueskytoo]

I have POTS but with hypertension rather than hypotension. My HR does the obligatory 30bpm+ rise on getting up from sitting or lying, and it can make me feel very ill indeed. Lying down will mostly sort this out, but there are probably more people with hypertensive POTS than they realise.

I had absolutely no idea I had postural hypertension until my tilt test. The consultant doing the test stopped it after five minutes as not only was I feeling incredibly ill to the point of tears running down my face and severely laboured breathing (it’s not always that bad but thankfully on this day it was - at least I had objective evidence of how ill it made me!) but my blood pressure was 200/140, which is hypertensive-crisis level. They were clearly worried about what might happen if they went any further with the test, as usually these tests run to 20 minutes or more, but after putting me back to horizontal my BP went down to my usual 115/70, which is perfectly normal. God only know how long I’d been walking around with a blood pressure so high it could actually have killed me at any point, and I’d never have known about it if not for insisting on this test to my GP.

I now, irritatingly, have to take blood pressure medications to make sure that standing upright doesn’t kill me, and have hypertension on my medical records, which also annoys me, because it’s purely postural. But hey, at least I’m not dead!