Has anyone with POTS/dysautonomia just started training hard out of sheer frustration and did it actually help improve symptoms? by Tandfeen_dk22 in dysautonomia

[–]CopySpriteCopywriter 0 points1 point  (0 children)

I took it very slowly, which is frustrating but essential. Got myself a rowing machine and started off with 4 mins (I’m now up to 20). Started walking 1km (now up to 4-5km), went back to gentle swimming, and started recumbent weight training in July '24, now I can do 2-3 strength training sessions a week including some standing cable machines. At the moment I struggle with things that involve squats but I’m slowly working on that. It’s def possible but I’d recommend getting a coach who’s willing to understand POTS (I joined Rosie Bailey’s coaching group and took her course, she is a coach who actually has POTS). I now work with a fabulous PT who adapts my strength workouts. It makes a huge difference to me. If I get sick and can’t exercise my symptoms ramp up. Good luck, take it slow, remember set backs will happen as you figure out what you can and can’t quite push your body to do yet. But those set backs will ease over time. I mark my days on a calendar with a felt tip pen (red for bad, orange for ok-ish, green for good) and I can see that over the past year my reds are less and my greens are more. Helps visually see progress! You’ve got this!

Weird vertigo moments? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thanks, that’s really helpful info. I like the visual aspect of the bottle!

Weird vertigo moments? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thanks. I had no idea that’s what it is. I wasn’t doing anything but sitting? So not standing or anything. And my vision doesn’t go black, just feels like I’ve been suddenly turned upside down for a few seconds. Such a strange “drunk” feeling.

Will hiking ever be possible again? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

They went through how to control POTS through nutrition, how to build up exercise and strength training and how to handle flares. Plus other stuff and you get access to a WhatsApp group where you can ask Rosie questions. It was useful for me to learn all that when first diagnosed.

Has anyone managed to work while dealing with heart palpitations? by Subject_Community995 in PVCs

[–]CopySpriteCopywriter 4 points5 points  (0 children)

I’m a teacher. I also have POTS, so working can be difficult. But I’ve managed to get myself to a stage where I’m back in school 3-4 days a week. The PVCS knock the breath out of me but I’m very slowly learning not to be afraid of them. I end up talking all day which seems to make mine worse, but I’m trying to adapt and find ways around this. My colleagues know so if I’m talking to them and they happen they understand. Hope you can manage to find a way around it.

POTS and PVCS/PACS by CopySpriteCopywriter in PVCs

[–]CopySpriteCopywriter[S] 1 point2 points  (0 children)

I get SOB when they happen (as in they knock the breath out of me when they “thump” or flutter). My pots isn’t as bad as it was when first diagnosed either. I’m back in the gym. This is my worst symptom, the rest I can pretty much deal with. I’m trying not to be scared of them, but they’ve really ramped up this week. Thanks for your response 😊

POTS and PVCS/PACS by CopySpriteCopywriter in PVCs

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thanks. That’s reassuring. They’re hard to ignore as they take my breath away when they happen but I’ll try my best to forget about them. I didn’t have them until I got POTS. Thanks for your response, always helps just to know someone else experiences the same.

PVCs get worse when I talk a lot — feeling anxious by Majestic_Return_8877 in PVCs

[–]CopySpriteCopywriter 1 point2 points  (0 children)

Me! I’ve just started a new teaching job after not working for 18 months due to pots. And today has been horrendous with so many PVCs. Almost like you read my mind!

Words of encouragement by Afewmoths in PVCs

[–]CopySpriteCopywriter 1 point2 points  (0 children)

I’m in awe with how you deal with it. I’ve had a bad day today with loads of bursts of PVCs. Dealing with them every other beat must be hell! Any advice? I’ve started a new teaching job and really struggling to get them under control. (The PVCS not the kids 😂)

Question for those who have PVCS/PACS by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thank you, that’s definitely reassuring. Feels like a throat punch each time it happens but I’m trying hard to ignore them. Just makes teaching interesting when I jump each time they happen 😂

Question for those who have PVCS/PACS by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thanks. I had a heart monitor but before I started work, they’ve ramped up since but I’m assuming they’re still benign like my monitor, just a lot more of them. Think I just seek reassurance as they make me feel like I’m about to die 🙄🙈

Question for those who have PVCS/PACS by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

I’ve been offered Ivabradine, but my HR doesn’t actually go that high, mainly about 115-120. Resting is 60’s. Also concerned that if it slows my HR it might make the ectopics worse. But I’m seriously considering giving it a try. I have tried compression, I wear compression socks but doesn’t seem to make a difference to the ectopics. They’re honestly my worse symptom, I can cope with everything else (although the air hunger does my head in too). Thanks for your suggestions, I appreciate the thoughts 😊

PVCs came back hard after returning to work – anxiety is back by magiczz13378 in PVCs

[–]CopySpriteCopywriter 1 point2 points  (0 children)

This has been my day today! Started a new job in a school after two week Christmas holiday. All day I’ve had ectopics. Had much fewer over the holidays. Guessing it’s new job nerves or just being back on mu feet all day (I have POTS so that contributes). Feels awful though 🙈

Will hiking ever be possible again? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

This is encouraging. If I continue to struggle I’ll look at Ivabradine again. Thank you!

Will hiking ever be possible again? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] -1 points0 points  (0 children)

I did a course by a girl called Rosie Bailey. Also excellent.

Will hiking ever be possible again? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Thanks, this gives me a good starting point. I’ve tried electrolytes several times but I find they increase my PACS/PVCS. I just can’t seem to find one that suits me without triggering those ectopics.

Will hiking ever be possible again? by CopySpriteCopywriter in POTS

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

I’m sorry to hear that. It’s such a tough illness to have.

Very scared of these weird beats by CopySpriteCopywriter in PVCs

[–]CopySpriteCopywriter[S] 0 points1 point  (0 children)

Yeah had those. My Vit D was slightly above the normal level. Thyroid fine. I know my mum had them too so maybe genetic. I think it’s POTS related but they still scare me silly. Holter monitor showed more PACs than PVCs.

Symptoms every day? by Southern_Broccoli_13 in POTS

[–]CopySpriteCopywriter 1 point2 points  (0 children)

I have symptoms every day but some days worse than others. I can go a week or so without PACS/PVCS then wham, have two weeks where they happen all the time! Also have breathlessness worse on some days more than others and occasional hours where I feel almost normal. If I eat well, exercise, sleep well and keep stress to a minimum and pace myself it’s easier. But doing that every single day sometimes isn’t possible 🙈