What do we actually know about orthostatic intolerance?

Your pattern could still relate to OI if you're doing a lot of orthostatically challenging things during the day. I'm curious, do you have prominent OI? As in, do you get dizzy spells/times when you nearly faint or actually faint? No need to answer if you don't want to.

There are certainly people with ME/CFS who can do orthostatic feats I couldn't dream of eg sitting upright in a wheelchair for hours and hours...and talking for significant portions of that time. They'll feel crap afterwards but I'd have fainted within the first half hour.

 

A few years back I tried to distinguish between my POTS and my OI, but I just go with the flow these days.

I was tested for POTS day and night - about once an hour or so in the day at least - for four days. Abnormal HR and BP within 10 minutes of standing plus tachycardia. But I don't know if I really feel that. Can't say.

OI I can. Standing bothers me. I have never fainted, but it gets harder to stand the longer I'm up. I prefer to lean on stuff or use a support. The longer I'm upright - including sitting in a chair, the worse I slide. This is both cognitively and physically/strength-wise. The cognitive decline is disconcerting. I struggle with segues when talking or writing, I mix up prepositions, my inferences are dangerously off at times, etc - and I used to write for a living. These daily burgeoning deficits I ascribe to OI - rightly or wrongly.

As for dizziness...No. But bad balance problems. I tilt more as the day ages. It's like gravity pulls me more to the left, like I am starting to fall (a gentle pull of a falling sensation), but I usually don't fall. The NIH said I have profound bilateral vestibular shit, and I'm sure these contributes to gait issues etc, but I still embrace OI as a primary culprit.

 

"I have the same issue. Standing, sitting and slow walking are a problem. Fast walking is fine, which points to cerebral perfusion"

Ditto

Postural swaying with low gait speed and standing still. I feel much better when I start moving quickly.

 

That all sounds horrible to deal with. I think the confusion is that you and I are using the term OI differently. I use OI as an umbrella/parent term, with POTS, postural hypotension, neurally-mediated hypotension etc as types of OI.

My difficulty is different from yours on testing - takes longer to make me hypotensive (at least when tested in the afternoon), but evenutally my BP drops spectacularly and reproduces the symptoms I experience during near-faints at home exactly. The people who have tested me are only concerned with whether I'm actually at risk of passing out and falling and hitting my head. But my concern is why do we feel so rotten before that, ie for me, pretty much all the time when upright? Why do I feel hideous for the rest of the day if I "push through" on orthostatically challenging activities? Why does @NelliePledge feel awful when upright even though she's hypertensive (notwithstanding that someone with high blood pressure could still have episodes of rapid drops in blood pressure)?

I think the questions @Jonathan Edwards asks are pertinent, such as whether that the difficulties people with ME/CFS have being upright are really about blood pressure plus or minus heart rate or something else entirely. (Hope I haven't misrepresented your questions, JE!) We're getting signals to lie down, perhaps in the same way that we seem to get signals to stop squeezing the dynamometer in the NIH study. Why? Or more interestingly, how?

 

Any thoughts about how to get it tidied out? This is such a disabling, life-sucking symptom for so many of us.

 

I'd like to set up such a poll, just to see if there's a pattern, but I'd like help to settle on the question. Better to ask, 'When did you lie down today?' or 'When did your OI make you lie down today?'

I'm not sure whether we can tell OI from fatigue.

And then I thought that the response options could be 7am-8am, 8am-9am, etc. to be checked if you spent any time lying down within each hourly period.

 

Just a note that this won’t apply to severe people as a question (atleast
those of us who are horizontal 24/7). That’s not necessarily a problem, but will limit ur sample size.

 

That's a good point, @Yann04, thanks! I'm intending to have an explanatory first post and will mention this.

 

For years I knew lying down help ease the impact of ME, when I still worked I would spend 20 minutes if possible lying flat on the floor in the office, but it was not till much later I knew of the concept of orthostatic intolerance, coming to realise just being upright was a factor. Even up to ten years ago I was aware that sitting was lest restful than lying flat, and that I struggle to undertake any activity bending forward such as weeding, but still did not recognise specific issues with being upright, just assuming sitting require more physical effort than lying horizontal.

Some ten years ago following a major relapse I found I could not be upright for more that ten minutes without getting dizzy or even fainting. It also became more obvious that if I could do an activity lying down I could do it much longer than putting in the same effort upright. However this has never been formally evaluated and though I feel confident saying I have orthostatic intolerance I have no idea if I have POTS or postural orthostatic hypotension. This is further confuse as I also now have mild hypertension all the time.

My feeling is we need a clear list of relevant symptoms, eg

• dizzy when upright
• fainting when standing
• fatigue more rapidly when upright or trigger PEM more readily
• need to lie horizontal
• increased heart rate when upright (postural orthostatic tachycardia- POTS)
• lower blood pressure when upright (postural orthostatic hypotension)
• problems undertaking any activity requiring bending forward such that the head is lower than the heart
• ?
• results of tilt table or leaning tests

Then these can generate a Venn diagram or a flow chart to help decide if what we are looking at.

At my worst when I was in bed except to go to the toilet, I could at best spend five minutes looking out of the window when standing or a little more when sitting. Now I can spend several hours upright at a time as long as it is followed by several days mainly lying down, but it is hard to say what is orthostatic issues and what is just the general exercise intolerance of ME.

 

How would you ask about the pattern in a way that would give us useful info? I'm still inclined to go hourly and hope we get enough respondents for any signal to emerge.

 

It won't apply to some not-severe people either.

My problems with OI are quite limiting and have resulted in falls, but the horribly-ill feeling is relieved by sitting down.

Same goes for the two people I know face to face who have ME/CFS. We're disabled, but none of us have been severely ill for any length of time. We've all had periods when we could just about manage a desk job, we got to know each other through work.

 

This might be revealing. No idea whether it's connected to OI, but quite a few people have said the same thing. Even when I'm feeling as well as I ever get, leaning forward the way you would to repot a plant will leave me breathless and exhausted in seconds.

It's really odd.

 

Just wondering if I should do separate polls for those who are vs aren't using any OI treatments.

 

I guess it's possible they might be slightly different questions, but if it's only about symptoms, maybe it is the same survey?

Maybe there are more important differences between OI symptoms + big increase in heart rate, OI symptoms + big drop in blood pressure, OI symptoms + both of those, and OI symptoms + normal HR and BP.

 

My only question is whether people lay down or not during each hourly period - I won't be asking about symptoms. My concern is that meds will change the natural timing of the symptoms during the day, which is what I'm after. It's a blunt instrument, but we're either lying flat or we're not, which I think indicates a severe problem and a clearcut behaviour that doesn't need measuring with any kind of a gadget.

 

I have distinguished the differences between OI and vestibular dysfunction. Bending forward is a vestibular imbalance, and being upright concentrating for too long is OI, both require recovery by lying down.

 

For the time-chart, would there be an option to block in for reclining as well as for horizontal ?

Also, when I get slightly lightheaded its constant until it wears off, whether in bed or sitting or upright, so its not particularly related to postural change. So would my entry mess up the timeline pattern if any other light heads etc only occur on changing posture or standing ?

Another time it would be very interesting to chart the distibution of all these symptoms in a group of people