Is there such a thing as mild orthostatic intolerance?

[Peter T]

I do not have classic POTs as I do not in the very short term have any noticeable problems standing upright within the constraints of my current ME symptoms, other than when my ME is more marked requiring a stick for balance.

However, I am wondering if being upright, either standing or sitting is for me more exhausting than you would expect from the physical exertion. Being upright seems to be a more significant factor in limiting the amount of time I have out of bed each day rather than other aspects of exertion. For example sitting upright and talking to someone is as tiring as doing housework for the same period of time, however the talking is not the limiting factor as when I can only tolerate say half an hour sitting talking, I could tolerate an hour or so talking with someone whilst lying down.

Similarly I can spend significantly more time using my iPad lying down than I can using a computer sitting up. Obviously sitting uses additional energy, but for me sitting at the computer is as tiring as gardening for the same amount of time.

I have not for some time kept a detailed activity record. In the past it has been very useful in identifying problem foods (eg gluten intolerance) and helping me understand my boom and bust cycles and the implications of post exertional malaise, but given I currently only have two or three hours a day in total not lying down it feels that the essentials of daily living are more of a priority. However this means I can not be certain if my subjective impression that just being upright is as tiring as undertaking physical activity for the same amount of time is accurate.

Does anyone else have a similar experience? Does any of the published literature on orthostatic intolerance or POTs look at it as a continuum rather than an all or nothing phenomenon? Is there such a thing as mild orthostatic intolerance?

 

[Valentijn]

Does anyone else have a similar experience? Does any of the published literature on orthostatic intolerance or POTs look at it as a continuum rather than an all or nothing phenomenon? Is there such a thing as mild orthostatic intolerance?

There are delayed forms of OI, such as neurally mediated hypotension. That can result in a low blood pressure or low pulse pressure after sitting or standing for a while. A blood pressure monitor at home should be able to show if something funky is happening.

 

[Scarecrow]

My experience of OI has been all over the place, sometimes mild, very occasionally and for short periods moderately severe - and to cap it all, sometimes it's like POTS, sometimes like NMH. It's difficult to make any sense of it but overexertion has definitely been an aggravating factor.

Generally, I tolerate being upright very well but I always prefer to have my feet up. My ME is much less severe than yours.

Here's a video I saw on another site recently. The presentation is split into two parts: orthostatic intolerance and disorders of tissue elasticity (I've only watched the first half so far, so don't know how relevant the whole thing is.)

 

[Helen]

Does anyone else have a similar experience? Does any of the published literature on orthostatic intolerance or POTs look at it as a continuum rather than an all or nothing phenomenon? Is there such a thing as mild orthostatic intolerance?

Hi Peter and welcome to the forum,
Yes, I have the same symptoms as you have as of blood pressure. I´m also lucky not to have POTS, but still I have symptoms from orthostatic intolerans. Before I knew why, a cardiologist told me that I had a low blood volume. At that time I didn´t know that it is a common symptom with ME/CFS.

With a low blood volume the blood pressure increases as a compensation in an upright position. When we lay down there is no need for a high blood pressure and it goes down. I always get some noticeable heart beats before it adjusts, and sometimes even tachycardia.

The only treatment that I know about is to drink more water (my ME-doctor recommends 2 litres daily), preferably with added electrolytes. IV (intra venous) saline may help, but only temporarily.

 

[Jonathan Edwards]

I do not have classic POTs as I do not in the very short term have any noticeable problems standing upright within the constraints of my current ME symptoms, other than when my ME is more marked requiring a stick for balance.

However, I am wondering if being upright, either standing or sitting is for me more exhausting than you would expect from the physical exertion.

What you are describing does not sound like orthostatic intolerance in the sense it is used medically. Orthostatic intolerance refers to a problem with regulating blood pressure on standing which will either present as faintness or rapid heart beats (palpitation) or both. I have always had the common sort of 'tall man' orthostatic intolerance in that if I rise from sitting in a low chair or from a bed quickly I am pretty much guaranteed to feel faint enough to need to clutch on to things. It is 'mild' in the sense that I have learnt to be careful and it only lasts about ten seconds. POTS is different in that the effect is to produce palpitation and seems to be much less common. Being unable to tolerate standing because of fatigue is something quite different. Maybe it is a feature of ME and unrelated to cardiovascular status, i.e. not POTS or orthostatic hypotension.

 

[arewenearlythereyet]

I have found generally that standing still has always been more tricky than walking or general pottering since I got sick. I tend to get light headed, and nausea if standing for longer than 10 minutes. This appears to have gradually worsened over time. I'm pretty sure I don't have pots from the little home test I did (bpm only went up by 15-20 lying to standing). Heart palpitations were a big problem for me but these seem to be controlled via potassium supplements. They rear their ugly head when I've either over done it, I have a cold or other virus or the weather is too hot. I suspect there is some sort of circulation thing going on but its difficult to work out what really.

 

[Sasha]

Orthostatic intolerance refers to a problem with regulating blood pressure on standing which will either present as faintness or rapid heart beats (palpitation) or both.

I'm not sure that that's the case. At a recent conference this year (CMRC? Memory, memory ) someone presented research showing that PWME have cerebral hypoperfusion even when they pass a tilt test with flying colours, which certainly matches my experience of having delayed OI which is severely disabling but it being a total crapshoot what my conventional tilt-table test results will be. I don't feel faint unless I really push myself to remain upright for a long time and I don't get palpitations but I feel a need to lie down (as opposed to merely rest) nevertheless with upright posture.

Similarly,

A blood pressure monitor at home should be able to show if something funky is happening.

I'm not sure that helps if you don't show changes in your BP but it may indicate whether you have low resting BP.

 

[Scarecrow]

I have always had the common sort of 'tall man' orthostatic intolerance in that if I rise from sitting in a low chair or from a bed quickly I am pretty much guaranteed to feel faint enough to need to clutch on to things.

I also get orthostatic hypotension (despite being a short woman) but it's a very different situation to the sort of orthostatic intolerance that someone with ME might experience.

Being unable to tolerate standing because of fatigue is something quite different.

It isn't the fatigue that causes problems standing for prolonged periods. It's the feeling of lightheadedness and tremulousness etc that make you desperate to either move or sit down before you fall down. It causes the fatigue rather than being caused by fatigue.

Edited to add: What I have just described is much more extreme then what @Peter Trewhitt has mentioned but I think a lot of us recognise it as being on the same scale.

 

[Peter T]

Here's a video I saw on another site recently. The presentation is split into two parts: orthostatic intolerance and disorders of tissue elasticity (I've only watched the first half so far, so don't know how relevant the whole thing is.)

Thank you For posting this video link, I have just watched the first part of the video so far, and will need to watch it again to process it, but it is very interesting and very clear.

 

[Marco]

I'm not sure what I have. At the start of illness I had frequent spells of syncope/near syncope on standing but was generally at the mild end of the spectrum. Nowadays (unable to work) I rarely feel faint when standing but do experience tachycardia. What I do find though is if I'm on my feet for a significant period of time (standing still is worse) I get a gradual build up of what feels like pressure/inflammation/and conversely lightheadedness that makes me feel quite ill and I would have to say tired as it limits my activity.

Sitting still for long periods isn't good either. I seem to do better with short spells of moving around interspersed with rest.

 

[voner]

There are a couple pretty informative videos by two different autonomic dysfunction clinicians on another thread.

https://www.s4me.info/index.php?thr...l-activation-in-dysautonomia.1191/#post-21122

in the first one Dr. Brent Goodman, Director of the Autonomic Lab at Mayo Clinic's Scottsdale, AZ campus Describes how highly variable autonomic dysfunction can be both day to day and over time. it can also be pretty steady state. I found the videos well worth my time.

 

[Mij]

Is there such a thing as mild orthostatic intolerance?

No. Years ago I would have considered myself 'mild' until I was in a situation where I could not get home or lie down when I needed to. I prepare and put things in place in advance before an 'outing' so not to collapse. If I have my arms up over my head for too long, it takes a couple days just to recover.

Unfortunately, there aren't too many specialists who can diagnose the different 'types' and severity.

 

[Jonathan Edwards]

I'm not sure that that's the case. At a recent conference this year someone presented research showing that PWME have cerebral hypoperfusion even when they pass a tilt test with flying colours, which certainly matches my experience of having delayed OI which is severely disabling but it being a total crapshoot what my conventional tilt-table test results will be. I don't feel faint unless I really push myself to remain upright for a long time and I don't get palpitations but I feel a need to lie down (as opposed to merely rest) nevertheless with upright posture.

Yes, but that would not be orthostatic intolerance. The term refers to a cardiovascular shift on standing - or orthostasis. I am pretty sure that hypoperfusion reported on fMRI is with patients lying flat - Most MRI scanners only work that way.

 

[Melanie]

@Peter Trewhitt

There are delayed forms of OI, such as neurally mediated hypotension. That can result in a low blood pressure or low pulse pressure after sitting or standing for a while. A blood pressure monitor at home should be able to show if something funky is happening.

My BP was low normal, 110/70. The doctor put me through a Tilt Table test and I fainted. Many years later my BP began dropping and then sat at 80/50 and I am on Fludrocortisone where it is in more normal ranges but now I experience lightheadedness and dizziness although not severe.

 

[Sasha]

Yes, but that would not be orthostatic intolerance. The term refers to a cardiovascular shift on standing - or orthostasis. I am pretty sure that hypoperfusion reported on fMRI is with patients lying flat - Most MRI scanners only work that way.

I don't think fMRI was used. It was Frans Visser who was talking about this (I think this should play at the point where he's talking about it, about 7 minutes in):

 

[Jonathan Edwards]

It isn't the fatigue that causes problems standing for prolonged periods. It's the feeling of lightheadedness and tremulousness etc that make you desperate to either move or sit down before you fall down. It causes the fatigue rather than being caused by fatigue.

Edited to add: What I have just described is much more extreme then what @Peter Trewhitt has mentioned but I think a lot of us recognise it as being on the same scale.

Maybe the physicians should take heed of this - that PWME find they feel lightheaded after prolonged standing. A tilt table test would clearly be useless if it is done over a short period. It would be interesting to know if blood pressure actually falls when this symptom occurs. It makes me think even more that the idea that PWME have 'POTS' is a red herring. What you describe sounds more like something I have acquired only since I have passed the age of sixty five when viewing in art galleries. I cannot keep the same upright position for more than a few minutes. I have to sit down, or start walking about - in which case I am fine. I suspect it has something to do with neural signals from veins in the lower limbs. I very much doubt blood pressure actually falls. I suspect it is just that the brain cannot tolerate the input - rather as it cannot tolerate the input from an inflamed trachea without coughing during a concert, or just holding one's breath. My guess is that it is another aspect of signal intolerance. That could be tested in an exercise medicine lab.

 

[Sasha]

Maybe the physicians should take heed of this - that PWME find they feel lightheaded after prolonged standing. A tilt table test would clearly be useless if it is done over a short period.

I had one done over a long period (at my insistence) and still passed with flying colours, despite being thoroughly disabled by OI symptoms all day, every day, for years.

 

[Scarecrow]

@Jonathan Edwards I didn't mean to be misleading. Many have the immediate problem of POTS, too. I have that on rare occasions but is more common for me to have the intolerance eventually rather than sooner - but bear in mind that I'm relatively mildly affected by ME and a lot of pwME wouldn't have the stamina to be on their feet for half an hour or so.

In any case the reaction is the same. The first thing I notice is being aware that I'm standing cross-legged, squeezing my thighs together, which I understand is an attempt to maintain blood pressure stop blood from pooling but as you suggest, perhaps it is a false signal. But what do you make of the palpitations?

POTS is a much bigger problem for people because it's far more disabling.

 

[Jonathan Edwards]

I don't think fMRI was used. It was Frans Visser who was talking about this (I think this should play at the point where he's talking about it, about 7 minutes in):

You are right, he seems to be measuring cerebral blood flow by internal carotid doppler, which can be done in any position. However, I am doubtful that this is a reliable method of measuring flow. It is highly subjective so would need to be done without knowing whether or not the person was patient or control. Moreover, it is hard to see why flow should go down unless pressure goes down. The only alternative is that cerebral vascular resistance increases and that would be very surprising.

The whole thing is very interesting. I suspect the physiology may be quite different from what people are assuming. Unfortunately physicians who get involved in this sort of thing are often not that knowledgeable about the pitfalls of physiology.

 

[Jonathan Edwards]

I had one done over a long period (at my insistence) and still passed with flying colours, despite being thoroughly disabled by OI symptoms all day, every day, for years.

That confirms my suspicion. My guess is that this symptom has nothing to do with blood flow or pressure.