Orthostatic intolerance

@lunarainbows a friend with POTs (and ME) told me that she didn't feel the need to lie down frequently or feel unwell from being upright like I did. It's so complicated.

 

Yes I do wonder weather there's lots of subtypes and groups even within the banner of me and pots. I do wish pots was studied more!

 

As pots is a form of orthostatic intolerance. I told my symptoms to my cardiologist and said I feel much better lying down, and much worse sitting up as well as other symptoms. And that's what led him to investigate me for pots and tachycardia conditions.

I think it would help so many people if there was something in the nice guidelines about tachycardia, pots, and referring people to cardiologists will or pots clinics to get it checked out. It's a small thing that can make a big difference. Especially people are referred early on in the illness.

I always find it extraordinary that Dr. Bansal at Saint Helier would see people without even talking about tachycardia, and without referring anyone to a cardiologist, despite the fact that a PoTS specialist works at the very same hospital and knows him very well, and in fact the cardiologist ends up seeing many of these people, but only if they find out about it themselves and refer themselves! PoTS, inappropriate sinus tachycardia, etc is not Fringe medicine. It's easy enough to measure heart rate and blood pressure on a tilt table test or indeed other measures like I had. But I only found out about pots a long time after I got ill.

 

After mentioning it on one of our PoTS threads a month or so ago, I’m definitely noticing worsening PoTS when I’m resting after activity/being out.

I’ve been checking my watch to see when it’s at its most prevalent and it’s during the first few hours after activity when I’m completely resting and even when I’m half lying down.

It’s before the PEM kicks in (or the obvious PEM at least) I don’t know if it stops when the PEM starts, as I’m either too ill to remember to check or I’m stuck in horizontal so it doesn’t show anyway.

But the hours straight after physical activity when resting are really noticeable.

 

Thanks! I went to the Bateman Horne Center YouTube channel and found the video "What is Orthostatic Intolerance? Part 2" so I thought I'd post it here:



(I have not yet watched either video, probably will be a while before I do)

 

This is worse in the morning for me. Is there an explanation as to why that is?

 

I have a vague memory that one factor (depending on type of Orthostatic Intolerance, there are probably a lot of factors) is getting somewhat dehydrated overnight - more water in bladder, less water in blood vessels.