had a horrible episode today of racing heart (130) and feeling faint chest discomfort when in the shop. i saw my cardiologist who diagnosed me with POTS my heart keeps jumping 30 beats when i stand or do any small activity. he put me on a tablet to help with this called ivabradine.
does anyone else have PoTs? did it go away on its own? what causes it?
not a great week for me firat parkinson white syndrome spotted on my kardia ecg monitor and worry of ablation to correct it and now Pots. cardiologistsaid said both are unrelated.
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malorie
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Yes and it is often travelling companion of various arrythmias and THEY ARE RELATED. You need a cardiologist who works with Autonomic Dysfunctions. Here is a link to the PoTS website which explains a lot.
On those sites you will find a list of cardiologists who work specifically with arrythmias and autonomic conditions so change your cardiologist. Ring the AA for help and advice. Look at the 2019 Patient Day presentations and get the names of the speakers there.
It can be managed but no, it won’t go away on it’s own. Are you in the UK or US? The AA does have a US site as well.
There was a really good seminar on PoTS at the AA Patient Day in Birmingham UK 2018 as it often is just one syndrome in a complex mixture of syndromes such as EDS, Autism, Arrythmias etc. Do you have any hyper mobility in your joints?
I have arrythmias, PoTS, am Hypotensive (low BP), EDS (Hypermobile which means my blood vessels become too stretchy - which causes the Hypotension which can trigger the arrythmia and Myasthenia.
Some really good info on these sites on living well with these conditions and how to manage them. The med that has helped my the most for the Myasthenia & low BP & PoTS is Pyridostigamine which cholineterase which is basically a neurotransmitter substitute. Ivabradine is used to treat Angina so maybe you need to know why you are taking this drug and it’s side effects - all pharmaceuticals have side effects - some you can live with and others you cannot. Anyone with Autonomic Dysfunction will always come across a great gap in knowledge by the ‘average’ doctor - in my experience - as it is relatively rare, not well researched, not well understood condition - words used from the doctors at the seminar.
Please PM me if you need more info or support. Best wishes CD.
Unfortunately I can no longer find the presentation slides on the AA site from the quite inspiring 2018 sessions but I note that the STARS section of AA will be putting on another seminar at the 2019 event purely about PoTS. I would urge you to attend, if you are able, as you will learn more in one day from that seminar in what to do, how to manage and how it affects so many people who go undiagnosed than you will in 10 years of going from doctor to doctor - my experience at least. Info here
thanks for that info it’s very helpful i agree i can’t help but think the wwp sudrome/svt and pots are related.
awful feeling this way my heart went from 80 to 120 this morning just getting out of bed. have a small baby so finding it difficult to do small household tasks. i’m living in ireland i’m just hoping that the medication eases it feeling such chronic fatigue even after full nights sleep.
i think i rather the svt that goes to 240 bpm at least it doesn’t last long this is more debilitating.
Please do look at the advice on living with PoTS - it is very helpful & lifestyle hacks will be more affective than meds. So hard with a baby, feel so much for you.
My heart for no reason jumps from a normal average if 70 bpm to 100. This has been happening for 20 years. Episodes lasts for up to 3 hours. I am on a beta blocker. Last couple of times had one of these episodes i took a magnesium tablet and they disappeared after around 10 minutes. Anything is worth a try. Good luck
Please also check my post of today on D-Ribose. I’m still researching this stuff myself so do post on this stuff so if you follow my posts, you should get notifications when I do post - if you want to obviously.
Whereabouts in Ireland are you? Married to an Irishman.
thanks i read your post very interesting i never heard of d ribose.
i’m much better energy wise today and no heart runs fingers crossed the ivabradine has settled the pots for me! yesterday i spent most the day lying on the floor. managed to go for walk with baby today so big improvement.
i’m located in dublin but originally from kildare.
So pleased you had a better day. With PoTS you will always feel much better when lying down - make sure you get up slowly and gently - transitioning from lying down to sitting or to standing can be problematic but it’s not good to lying down too much so even if you have your feet up, try not to be prone for too longer.
My husband is from Howth - I love Kildare, my step-daughter used to live there so we were frequent visitors but she has moved to UK now.
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