Soph1802

Yes I completely agree that the less stressed I am the better I feel. and same applies to triggers! This is all really helpful thank you

Thanks so much for the reassurance @MikeO. I don't actually take any meds - my POTS was induced by a reaction to medication so I've stayed away for a while. I do relaxation etc too - I'm actually going through a breakup after a 6 year relationship so stress is high which won't be helping. It's good to know that this is a normal part of POTS though rather than something else. Do you avoid triggers or try and calm your way through them?

I have those rushes and squeezing whenever I stand, sit, talk too long etc! Did yours go away? Did you ever get answers? It’s so scary!

Hi everyone I have dysautonomia that is sort of neuropathic POTS and OH. I am a lot better than I was and improving all the time. But I'm still super sensitive to any small trigger, and my body releases a lot more adrenaline than it should in response to that trigger. I can have a panic attack just from waiting for the result of a TV competition. If I am nervous about a meeting or something, I'll get a really big adrenaline rush and get palpitations, skipped beats, sweating etc. If someone/thing scares me, I'll really jump out of my skin and get this really strong heat sensation in my chest. I get mini adrenaline surges after meals sometimes too, or if I'm a bit anxious/not relaxed. I don't have hyperpots, as I never have high BP except from when it overshoots on positional changes to compensate for the low bp. I'm always hypotensive otherwise. When these rushes happen, they can feel like the adrenaline is rising in my chest causing me to find it hard to breathe, and it feels really scary. They have lessened a lot and I know that panic/adrenaline isn't dangerous, but it sure feels it! Do other people get this too? Is this common? I'm just wanting to know I'm not alone! Thanks all

Hi Spiderfrommars, When I change position eg stand up, I get an intense rush of blood to my head, my heart speeds up and pounds really hard and I feel a tight squeezing, intense chest pressure and I feel like I can’t breathe, like I have to take a really deep breath. My heart rate slows when this happens. I’ve tried to catch it on the bp monitor and it has recorded as high as 150/100- it only lasts about 5 seconds and then all normalises - bp goes back down to low/normal (mine is always low) and hr speeds up. Does this happen to you? What does your doc say re these spikes? I’m worried they’re dangerous and so scared of them, but as I have low bp I don’t want bp meds.

Hi all i know this is an old thread but this is something I’ve been struggling with for ages now and I get it so badly! It’s so hard to manage it’s an awful sensation and I get it every single time I stand, sit, or bend down! Did you ever find out what it was? I’ve tried to catch it on my BP machine a few times and have recorded some pretty high spikes, sometimes as high as 150/100. I’m so worried about it, which I know is probably not necessary as it’s just the body overcompensating for the BP drop and after a few seconds the BP comes right back down to low bp. Did you ever get anything from a dr on this? thanks so much Sophie

@Pistolits so lovely to hear others with similar stories, thank you! Yes I think my pots is definitely because of an exaggerated response to inappropriate vasodilation, so I don’t think it’s hyperpots (I don’t have the tremors, sweating or anything like that, and never high BP). I do get v short (seconds) bursts of high BP when I change position sometimes but I think this is over compensatory and because my Heart is beating so hard and fast to maintain pressure in the first place - so then if I sit down, for a second or two it is too much for the new position until it regulates itself. Anyway - it sounds like we have similar stories. My BP drops slowly over time as my heart struggles to maintain it rather than suddenly, and my HR doesn’t drop. But it’s definitely a mixture of pots and OH. Thanks for your replies!

@Pistol gosh that sounds awful! Glad to hear things have improved for you. I have improved significantly in many ways in the short time (1 year) that I’ve had the condition so I am hopeful, and I am generally mobile and able to do most things! I just like to have answers and it is so frustrating not being 100% about what is going on - especially when my tests seems to show that I have both conditions but docs don’t think this is possible!! To answer your question re treatment - I’m trying without meds for as long as I can because it was a reaction to beta blockers and tricyclics antidepressants that caused it. This is why I’m hopeful over time it can improve/go away as it seems to be a withdrawal reaction, just incredible prolonged.

Hi there I’m new to the forum and just getting my head around my diagnosis. My TTT showed my HR does increase over 30bpm and often over 120bpm on standing, and I have severe blood pooling and all the daily symptoms of POTS. I definitely relate to having the condition, however, once I stand up after a few mins while my HR keeps increasing my BP slowly drops until I pass out - this happened at 8 mins on the TTT but can be sooner on a morning etc. I never pass out during the day in normal life though, unless I stand perfectly still and even then I’d know when it was coming and sit down. My dr said that the bp drop means it’s not necessarily POTS - but rather more general dysautonomia but it presents like POTS. Does anyone else have this? Surely I just have both POTS and another kind of OI related to blood pooling? I know there are other posts on this but I’m just trying to understand. In a weird way, I want it to be POTS so I have an answer and something to work with. It seems to me that it is basically pots. thanks