POTS post exercise exertion... Is this right?

[Entwicklung]

Hi all.

It's been a long road to diagnosis but a cardiologist recently put all the pieces of my jigsaw together and said I have hypermobility with Dysautonomia/POTS symptoms. When looking through the info on line it all adds up... Had all the usual hallmarks for a loooong time including headaches, coat-hanger pain, problems being upright especially with heart rate and needing to lie down often in the day to feel better, vision problems, serious post-exercise/activity fatigue, the gastroparesis... the list goes on.

Anyway my question is about some changes I'm noticing the last month or two...

More recently I'm finding that, mainly if I've 'over-done' it during the day, lying down at night isn't making me feel better like it used to. Everything used to go away when I lay down, hence the POTS workup, but now I feel terrible upright and lying down if I've done too much. Generally with my heart is pounding hard and my pulse can be felt all over my body, my head hurts, sometimes pressure in my neck, my sleep is abysmal or non-existent and sometimes like my whole body is 'vibrating'.

Trying to reason this out, I'm thinking if I've done too much in the day then my body has struggled so much to cope that it can't just switch off the mechanisms and relax when I lie down then, it has to carry on or is locked in some sort of state of emergency trying to get the blood to my brain sorta thing. Is that possible? I have been trying to do more 'normal' level of activity recently, which could be the trigger.

The question is, does anybody else have this or know if it's a 'post exercise' or 'post exertional' POTS issue to be like this evening when lying down?

I would seriously appreciate any insight from those who have experience or know about the condition. I just want to get back to normal 🙏

[Cookieisland]

I’ve not been formally diagnosed with pots but I have IST and also have hypermobility and could relate to a lot of your post.

I get times where if I’m over tired when I go to bed, I wake up about an hour later with a really fast heart rate.. it is quite unsettling but I’ve found if I just try to stay calm and slow down my breathing it goes away quickly. The first time it happened I jumped out of bed and had a full blown panic attack thinking there was something wrong with me!

I’ve found it helps to really try to relax in the few hours before going to bed.. reading, doing some stretches etc, to calm your body down seems to help me. I only get it occasionally now and it’s only if I haven’t taken time to chill out first.. hope that helps!

[Entwicklung in reply to Cookieisland]

Ah thanks so much for sharing Cookieisland, that sounds difficult but also positive that you've figured out a way forward. I can sympathise because I have had issues like those in the past, but it's different now. It's clearly related to how much physical activity I've done in the day, potentially how long I've been upright.

It's confusing because with POTS you generally feel perfect when you lie down and I had that for a long time and at least there is some relief, but now at times it's bad upright and lying down. So frustrating, especially when it deprives you of sleep.

Thanks again and I hope things keep getting better for you ⭐