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

[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.

 

[voner]

I have the objective signs of POTS, that is, raised hearth rate by more than 30 BPM when going from lying down to standing. But I don't have any clear subjective symptoms. No vertigo or dizziness or unpleasant palpitations or feeling like I'm about to faint. So the condition doesn't bother me at all in any clear way.

However I'm thinking that maybe the raised heart rate contribute to why I feel tired fast when I am standing or walking. I am lucky to have pretty high physical endurance compared to many people with ME/CFS, I can be active on my feet for maybe 20-30 minutes without any problems. But after about that amount of time it gets harder and harder to remain upright, even without any activity. It feels like hard effort just to keep standing, like if I had run a marathon and just need to lay down. For a long time I thought that this is just because of low energy level in general, but maybe POTS contributes a little or a lot.

Are there other forum members who recognise this?

Do anyone have experience with medication that has made it easier to remain upright for a longer time?

@Liie,

My OI is similar to yours. Well documented POTS. standing still is the worst but moving back-and-forth helps when standing in line, etc.

I consulted with a cardiologist and ended up on a beta blocker. It helps.