Postural Tachycardia POTS

[mumkelly61]

does anyone have postural tachycardia as well as AF?

[CDreamer]

Oh Yes! In some ways way more disabling for everyday life - every time you stand up, going up stairs, I couldn’t stand for more than a few minutes. It seems to be more usual in young women.

Have you been diagnosed? Tilt Table test is the usual one.

I suggest you go to the STARS site on Arrythmia Alliance and read up. heartrhythmalliance.org/sta...

There are a few cardiologists who specialise in AF with POTS, if you can get to see one.

[mumkelly61 in reply to CDreamer]

thank you for replying, I agree more difficult to manage than AF, started taking digoxin and now Sotalol, which keep my rate lower but I’m struggling with side effects. Could you tell me if you have found anything, meds wise, that helps? I had to go private to see cardiologist and after two and a half years, because my AF has flared up, I have a phone consultation with cardio nurse!

[CDreamer in reply to mumkelly61]

No meds at all for heart - they made me a lot worse. Hardly ever seen meds specifically for POTS - all lifestyle measures. If you read the Living with a Condition leaflet for POTS you will see really good advice.

POTS is dysfunction of the Autonomic system so if you can do anything and everything to balance Symptomatic/Parasympathetic- that helps. Ensure you have salt in your diet, ensure you are more than average well hydrated, avoid standing or sitting still - exercise if you are able.

No one thing will ‘cure’ you it needs work, observation by journaling of what helps and what not. Avoid any meds that have a dilating affect on blood vessels, that makes things a whole lot worse I found but that’s because I’m hyper mobile anyway with low BP. What’s your BP like?

[Autumn_Leaves]

I have had POTS symptoms for many years but doing my own testing at home with BP monitor didn’t indicate any particular rise in HR or significant drop in BP as would be expected with POTS or postural hypotension. I did have low-normal BP to begin with and now it’s even lower with a low dose of bisoprolol, often below 90/60 both systolic and diastolic. Standing up can cause quite horrible symptoms which force me to sit down immediately. Cardiologist said no need to test for POTS but it’s always worth asking about getting the tilt table test as POTS is quite well known these days and you shouldn’t suffer in silence if it’s affecting your quality of life to any significant degree.

[mumkelly61 in reply to Autumn_Leaves]

thank you for replying

[Cat04]

Dr Sanjay Gupta York Cardiology does a lot of youtube videos on POTS well worth searching out.

[mumkelly61 in reply to Cat04]

thank you, I have his link on FB and have considered paying the £500 for a consultation, my GP knows he’s my local POTS specialist but won’t even refer me to nearest cardiologist, after second trip to A&E, they referred me for phone consultation with cardiology but it’s been cancelled due to strike, and so it goes on. I know there is no quick fix and have researched it widely, it’s just a struggle