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PoTs HELP

9 replies

Mumma02 · 09/01/2022 16:12

Firstly, I haven't been diagnosed, but pretty sure I have this. Increase of heart rate by about 40 bpm measured on pulse ox from laying down to standing position and can feel my head pounding. Sometimes I feel dizzy, quite out of breath walking up the stairs and generally tired.
At the start of last year I paid privately to see a neurologist as I was suffering from one sided headaches, pins and needles, weakness, brain fog and derealisation - MRI of brain came back clear and was put down to low ferritin and stress. Did improve and never suffered from a racing heart.
Had covid in October and all these racing heart/tachycardia episodes have definitely got worse since then.
Went to a&e last month with a resting heart rate of 136 but they said I have a fever when I got there and didn't really know why I was tachycardic. Since having my booster vaccine last week, I've been unwell and heart symptoms are worse. I feel as though I have adrenaline in my chest if that makes sense? Which quickly passes and I'm not anxious! Also feel breathless when standing up and doing minimal movements. Also suffered on and off with chest pain which changes for the last few weeks.
Have had a 24 hour ecg and heart echo that came back normal. All bloods normal and blood pressure normal too.
Seeing a private cardiologist on the 17th but have work tomorrow and feel really nervous about these symptoms.
Does anybody recognise these as symptoms of PoTs? I'm really worried I have a problem with my autonomic system!

OP posts:
Daisy95 · 09/01/2022 16:18

I have pots, out of interest what is your bloody pressure like?
Your symptoms are definitely similar to pots for sure.
I was diagnosed by a cardiologist and put on a low dose steroid.

Daisy95 · 09/01/2022 16:19

Sorry I was supposed to say I had pretty much all the same symptoms as you apart from the heart rate mine was more affected my blood pressure.

Daisy95 · 09/01/2022 16:22

Also in the meantime, make sure you wear compression stockings, have a salty snack when feeling really awful and ensure your fluid intake is good. Also before getting into the shower of bath make sure you have a big glass of water too. Just some tips to see if it helps atall?
I hope you get on well at your appointment

Mumma02 · 09/01/2022 17:11

Thanks @Daisy95 - it's usually between 110/120 over 70-80 but I've never done it standing up. Can I ask what steroid you use? I didn't think that was an option for medicaton. I don't like the idea of taking medication forever but also feel rubbish at the same time. So fed up that this has/is happening.

OP posts:
RemusLupinsBiggestGroupie · 09/01/2022 17:16

I wasn't diagnosed but was put on steroids (Fludrocortisone) which have helped.

butterflymum · 09/01/2022 17:18

Lots of useful info and, if needed, support at S.T.A.R.S.

ViceLikeBlip · 09/01/2022 17:24

I have also self diagnosed PoTS (same symptoms as you) and I've been feeling exactly the same since I had covid.

I get palpitations anyway, but they are more frequent, and more intense. Feels like I've just downed a triple espresso, but I never touch caffeine these days (because I know it makes my palpitations worse!)

It's always worth upping fluid, salt and iron 🤷‍♀️

Daisy95 · 09/01/2022 17:40

@Mumma02

Thanks *@Daisy95* - it's usually between 110/120 over 70-80 but I've never done it standing up. Can I ask what steroid you use? I didn't think that was an option for medicaton. I don't like the idea of taking medication forever but also feel rubbish at the same time. So fed up that this has/is happening.
Yes may be worth cchecking it standing too. I take fludrocortisone, i actually haven't taken it for 7 months now after having my daughter I trailed without it and I seem a bit better now so have stopped. However have noticed i have started feeling a bit rough again so think I'll start taking it again. It's such a tiny dose I take and I don't seem to have any side effects whatsoever. But definitely worth considering
Mumma02 · 09/01/2022 17:54

Thank you both. Does anyone know if this condition can ever go away on its own?

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