You guys will probably know most of this but i thought it was good as i suffer terribly with ectopics
Ectopics: You guys will probably know... - Atrial Fibrillati...
Ectopics
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Padayn01
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One word describes ectopics...torture.
I have them day in day out & I hate them 😤
Really how do you cope? they are so horrible and mix in the anxiety it just drives me crazy
I can cope with the sort of single random ones but when they go on for hours it’s so difficult to not let anxiety kick in & we all know they breed on anxiety. I try to distract myself as much as possible eg listening to my music & singing along or doing jigsaws, candy crush that sort of thing.
The worst time is in bed though with little distraction so just have to concentrate on the slow breathing
Thank you for this, how long have you been suffering with them? have you any AF or anything like that? thanks for replying
Nearly 30yrs. I have AF but as yet have had no further visits from the beast since diagnosis in April 2018
Have you had any abalation?
No
How many ectopics would you say you get a day? Do you get a bit of a rest for W few hours?
Some days only a few other days more troublesome but my point is I never go a day without any at all
Do you ever get dizzy or any pain when you have them?
No pain at all but I can feel a little dizzy if it's a longer lasting run
That’s good glad you don’t get any pain, do you feel it when it happens? I always get a slight discomfort for about a second when I get them
Do I feel the ectopics?
Yeah when they happen?
I feel every little thing
Oh do you yes I’m so sensitive with my heart I feel everything every little bump can I just ask is there anything you do that works that keeps them at bay or calms them down?
Not sure if anything specific works or it's just coincidence really. I definitely know what is a major cause for me & that's stress & anxiety. I take a half dose of Magnesium & eat nuts & seeds every day
Yeah I take magnesium also but last two days it hasn’t works
No I dont. However I have changed my magnesium tablets to Glycinate from Citrate and so far today I have not had one. With the Glycinate I get them sometimes in the Morning, but with the Citrate I had them a lot. I was taking Taurate but they seem to have sold out of them and I cannot get them, but I have to say I am happy with the Glycinate.
So sorry to hear that. I hope you get some relief in the future.
Thank you
I am actually beginning to think that ectopics - in the three years post-ablation - are far worse than the threat of occasional episodes of afib.
I almost regret having my ablation now, as I never ever got regular ectopics before it. But I've replaced having occasional afib with constant ectopics.
Tried so many things too: dietary changes, supplements, heart monitors, etc. but because we're not in afib and it isn't immediately life-threatening, the impact on QOL is just ignored.
I had a cardiology app via a Zoom meeting last night, and I'm now having a 2-week ECG sent out to me in the hopes it'll catch something that they can do something about but I'm not too hopeful. It never catches anything that worries the medical people!
I know it's got a lot of controversy surrounding it but after trying magnesium in tab form for 4 years, I have totally gone against better judgement and ordered a small bottle of ReMag to try. I'm also giving Waller Water a go too, to see whether that helps.
Do you find anything helps you at all, have you tried anything in that list?
Hello mate thanks for your reply I feel exactly the same as you I had an ablations 10 months ago QOL has improved slightly but these bloody ectopics are doing my head in, I have tried everything magnesium losing 9 stone diet changes take sprulina powder have kefir natural probiotics I’m doing everything just can’t beat it l, was meant to have a 7 day Holter monitor fitted than COVID -19 came and my appointment got cancelled, than cardiologist rang me said we are discharging you cause we can’t ablate short runs I have been having basically he palmed me off so I’m going back to my GP next Tuesday and going back to my cardiologist I’m even thinking of paying £380 to dr Sanjay Gupta to get the 7 day Holter monitor done
Yeah, they're horrible. The fear of afib is not nice, but you can work around it. The ectopics seem to have no rhyme or reason for happening. Like you, tried everything.
Saw a cardiologist at Spire yesterday, was meant to be having a monitor myself before Covid-19 then cancelled. I'm going privately to have a 2-week one. It's getting sent out to me so hopefully that'll show something. I hope you get something sorted out too, as it's like QOL doesn't matter, as long as your chances of stroke are lesser!
Yeah do you know what the chances of stroke are with ectopics my cardiologist did not want me on anticoagulants
I think the chances with ectopics are far less but it's still a danger.
The cardiologist I saw at the start of the week said its the side effects thay would make him reluctant to prescribe unless I have afib.
There is a theory that ectopics are caused by your heart trying to go into AF but failing. I always have a hint that I’m due for an episode because I get bursts of ectopics. AF is very much linked to inflammation which is why I get it if I have an infection or virus, whereas when I was younger I just got ectopics.
I always get ectopics when I’m not well or my anxiety is bad but no I get them for no reason so frustrating, can I ask do you know if you can get ectopics from scarring of the heart after abalation?
Hi there
I suffered palpitations and ectopics for four or five continuous hours a day. 24 hour monitor registered between 9 and 11 thousand ectopicS a day. Paid to see a private consultant who put me on Bisoprolol. Worse move I ever made, dreadful side effects and even more ectopics. Now it going to take me nearly a year to wean of this medication with even worse side effects.
The best thing I ever did was start on magnesium citrate 300mgs a day it take 2 to 3 weeks to get into your system but works for me. I have also had a loop recorder fitted in my chest which records and sends the information back to a central computer at the hospital and if the ectopics were dangerous they would ring me. This also helps a lot as you don’t worry so much if you don’t get that phone call. Also look on you tube at Dr Sanjay Gupter a York Cardiologist and search for what he says about ectopics and the different sorts of magnesium supplement that helps.
Padayn01• in reply to
Wow that’s brilliant about the loop recorder I wish my cardiologist got his arse into gear like that he advise me to go back on the bisraprol I told him no way after the nightmare side effects I had, than he goes your metraprole only has a couple of hours of release where bisraprol lasts 24 hrs I said no way
Hello
Just an observation certainly not advice as I'm not medically trained but I had at least a 1000+ PVCs a day but when my cardiologist changed my meds from Sotalol to ( slow release) Flecainide the ones I could feel stopped and now on the holter test I had recently it showed I had a few PACs ( but I didn't feel them). I have Paroxysmal Afib and have not had an ablation. Are you on any meds? I also take Bisoprolol and Magnesium Citrate. In my opinion Flecainide stopped the really bad thumping ones but it may be a coincidence.
Take care x
I’m on metraprole and I take magnesium glycinate
Ok so just a beta blocker. Well I hope you find a solution - I found them quite distressing but they disappeared when I changed meds.
Take care
I was due a 7 day Holter until COVID-19 cane than got cancelled so now have to chase that again
Hi. Sounds exactly like me a year ago. I was on proprananol for 13 years and then out of the blue the ectopics started, everyday, all day.
I was changed to bisoprolol, but this slowed my heart more and made them worse.
After lots of wrangling with the cardiologist ( who just wanted to increase the bisoprolol to 10mg (when I was already getting bradycardia at night on 5mg) finally agreed to trying a calcium channel blocker - Verapamil. Within 2 days, ectopics gone. From having hundreds a day and QOL very poor, to suddenly not having a single one was life changing. I get them occasionally now when stressed but nothing major. Life changing drug for me. Obviously, it may not work for everyone, this is just my experience.
Same with my cardiologist he just wants to up my beta blocker
Sounds like my experience with Flecainide. I'm sure there must be solutions for this awful condition out there it is just a question of finding something that hits the button so to speak. Each person is different.
Brilliant, thank you so much for posting that
Was a good read and very informative, Thanks , my cardiologist halved my bisoprolol from 5mg a day to 2.5 great improvement still get a few now and then . but now not so fearful.
I feel everyone’s pain and frustration on here...I’m right there with you!! I see meds work for some and not others so much. IMO ONLY meds do nothing for PVCs besides make you not have to feel them not so much. My cardiologist had me on beta blockers for a couple years and over time all they did was lower my bp and heart rate so low I felt horrible so I stopped them. I finally caught what was going on with a 48 hour monitor after quite a few attempts...you all know how that goes!!! Was sent to an EP and finally heard the words “I can help you” ...explained about the medications and how they are , in my case just a band aid ( with side effects) for me. I opted for the ablation and it has changed my life ( so far) ... I understand it’s not a guarantee forever, but for now I’ll take it. I do still have PVCs, some days just a few and some days more than that but very doable for me. I used to be in bi/trigeminy all day everyday and it was disturbing/ frustrating...life was rough. If meds work for you that’s great, I just think doctors are to quick to give pills and they end up making things worse...PVCs are an electrical issue and meds might slow the feeling of them down but won’t fix them. Everything I’ve said is just my opinion from my experience....I hope everyone suffering finds what works for them because I know the suffering they bring. Good luck to all !!!!
I do still get days where I’ve recorded 8 a minute for a good part of the day.... no rhyme or reason for it...I gave up trying to figure it out. I know this won’t be a popular thing to say as I know most people are deficient in magnesium , but for me I feel taking to much made mine worse...that’s just for me!!! I quit taking all medicine except for my statin which I would like to get off of also. I do take vitamin D3/K2 but that’s all. To many pills IMO unless you definitely need them is just confusing because you don’t know what is doing what to you....but I also understand the helplessness that comes with arrhythmias and the desperation to make it stop....it’s a fine line for sure.
I hear everything you say, so true you just try and find answers to help with this horrible condition, i honestly sit there and say to myself will i ever be right again and the longer this goes on for the more i will think this will have to be the norm for me and just make the best of it, i just hate this condition where you think you have a good run going where you are eating well, exercising, doing all the things you should be and than bang you wake up in the morning, your heart all over the place and you say why!!!!why!!!! and you just can't find an answer, must be one of the most frustrating conditions to have
Thanks for posting that. Very interesting.
I have had these for 40 years and tried everything to stop them. A big drink of water can help and i find they are worse when i am hungry, so eating some protein helps too, like a lump of steak. But when all else fails i find a dose of Gaviscon and waiting a while always works.
Cliff in Australia
I have ectopics everyday. Most days they are not too bad, but sometimes they can be debilitating. I don't know what triggers them or makes them better. They started after my AF diagnosis and I still have them. I had them before my ablation and after. I had them on Diltiazem and digoxin and when not on meds. I took magnesium taurate for months and no improvement. It is just something I live with.
How many would you get a day roughly? And are some days better?
On a good day, a couple dozen. On a bad day 2 to 10 every minute...all day. It can be exhausting. However, I have never had an AF episode on a day where I had a bunch of ectopics.
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