A thread to share your experiences of orthostatic intolerance - problems being upright.

[Peter T]

I don't consider myself to have OI. I get PEM symptoms after being upright, but this is related to physical exertion. I don't experience lightheadedness or a feeling of having to lie down.

Subjectively I believe there are two aspects to OI.

I used to think that being upright of it self simply involve more physical exertion than say lying down, However, as my OI worsened it became clearer that as much as it is possible to compare, I can do an activity lying down for dramatically longer than the same amount of exertion upright. This is very clear with cognitive exertion, where I can doing things on my iPad sitting up for only a fraction of the time I can do them upright. I also believe the same to be true of physical exertion, though direct comparison is much harder. Under this explanation being upright does not obviously trigger negative symptoms such as reduce blood pressure or tachycardia but does contribute towards triggering PEM.

However also when my ME is very severe I am only able to stand or sit for very short spells, at its worst perhaps just a few minutes without discomfort, shortness of breath, dizziness and actual feinting. Here I experience obvious and immediate negative impact from being upright. It is not possible being upright long enough for it to contribute towards triggering distinct PEM.

 

[OrganicChilli]

I had this exact experience for a year or so leading up to my diagnosis - exertion seemed to make it happen more frequently (even when it did not obviously map onto or precede PEM). I still get it occasionally, but much less frequently as I have become much less active. I was, and remain, very concerned, but could never get a cardiologist to care (I tried with at least three, none of whom would entertain the idea that anything could be wrong).

Yes, it first happened during exertion! I was way more severe a few months ago than I am now and when I did some cleaning my heart rate went from 100 to 40 back to 100 within a minute or so! I don't think it's PEM-related for me, but I've been mostly bedbound before it started. I thought maybe it could be actual deconditioning on top of ME/CFS. Sorry to hear you had such a poor experience with doctors although it's something measurable!

 

[Felis Catus]

Paramedics have an ECG device in a bag, so maybe district nurses have it, too.

If the doctors are understanding, they might organise a holter monitor to wear without you seeing them in person. Given how rarely it happens, it'd probably make more sense to get one for a week or two rather than the usual 24 or 48h

So there are some options to begin with, if there is a will on their side.

Given how rarely it happens and that it was captured by your wearable and not a medical device, it's possible that they dismiss it.

 

[ScoutB]

I agree very much with this:

Subjectively I believe there are two aspects to OI [...] I can do an activity lying down for dramatically longer than the same amount of exertion upright. This is very clear with cognitive exertion [...] Under this explanation being upright does not obviously trigger negative symptoms such as reduce blood pressure or tachycardia but does contribute towards triggering PEM.

Acute symptoms are often not all that obvious when I stand up, but it's always true that I will be able to follow a conversation, read, think straight etc. much longer if I'm lying down.

 

[bobbler]

I don't consider myself to have OI. I get PEM symptoms after being upright, but this is related to physical exertion. I don't experience lightheadedness or a feeling of having to lie down.

What I've noticed for the first time about four months ago is that sometimes my heart rate drops into the 40s to 60s although I'm either sitting or standing. My resting heart rate during the day when I'm lying flat is normally in the 70s! Standing should be at least 80s. I don't experience symptoms during these episodes, but my watch records sharp drops. I would say this happens 2-3 times a month. I don't have low blood pressure afaik.

AI calls it Bezold-Jarisch mechanism which is concerning. Should I get this checked out as it may not be ME/CFS related? Going to the GP in person or worse, a specialist, is going to result in PEM so I'm hesitant unless it's serious.

I think I’d like to get a watch that does this to this level because it’s possible this sounds familiar. I only picked it up because I always thought my ‘have to lie down’ turns were low blood pressure so one day happened to have that near when I had one. And instead of that being low it was high for me with pulse at 40 (it took me a while to get it on tho) and then as I measured the next five times went up to 80 as my blood pressure went down. Strangely given some of the ideas that come up for that suggesting head elevation it was getting in a recliner that caused that relief and standing doing something when the turn occurred.

It obviously feels like I missed the important beginning of the story there to know which was chasing which as a compensation.

 

[Mij]

When my GP starting taking three BP readings in a row, it was interesting that my BP was on the higher end during the first reading and went down to normal after the third.

When I go out power walking when feeling better in the evenings, I no longer feel the need to lie down when I get home until I go to bed, and even then I don't feel the need to lie down. But I never take a warmish shower after my walk or I feel my arms/chest become very weak, similar to how I feel during delayed PEM.