PACs - how many is too many? - Arrhythmia Alliance

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PACs - how many is too many?

stargazey profile image
30 Replies

Just spoke with my GP re results of latest 24 holter. October showed 13,000 PACs in 24 hours, last week showed 16,000. He was unconcerned but said he would write to the cardiologist. I am VERY concerned. I've had these things for years but the number goes up every time I wear a monitor. Had a beta blocker a few years ago but just made heart slow and still got the PACs. Anyone else get that many?

30 Replies
Malayabalaya profile image
Malayabalaya

Hi 16000 per 24 hours does seem high-I think going on for 20% of beats? I had 22% ectopics from PVCs. Betablockers didn’t work but Flecainide has worked for me and they’ve disappeared. Ablation is also a possibility. I’m sure your Cardiologist will find the right way forward for you. Good luck

stargazey profile image
stargazey in reply to Malayabalaya

Thank you, cardiologist wasn't interest when I had 13,000 going to write again.

Autumn_Leaves profile image
Autumn_Leaves in reply to stargazey

Good luck. 16,000 in 24h is a lot. My 24h ECG picked up 5% but I’m sure some days are much worse. I feel every one. I had my first (unconfirmed) episode of AF on Christmas Day according to my Apple Watch which I managed to resolve by taking a beta blocker 2.5mg Bisoprolol. I’d been prescribed those as a “trial” to see if they helped the ectopics so I stayed on them in the hope it would help. Alas. no change in the ectopics and then I had two more AF episodes in April, one at 2am, so I took a beta blocker tablet which seemed to help eventually.

I’d already been referred to a cardiologist last year, who ordered tests. I had a telephone appointment in May and he suggested taking 5mg Bisoprolol. I haven’t increased the dose but reserving it for particularly bad episodes. I noticed that before the onset of these suspected AF episodes the ectopics were becoming very frequent and problematical immediately beforehand. The cardiologist told me that the Apple Watch wasn’t adequate to diagnose AF but it was all I had at the time. So I don’t have a formal diagnosis of AF. I had another episode at the Jubilee Weekend but I was visiting relatives so once again I had to take a beta blocker to get a more normalised rhythm, albeit with plenty of ectopics.

I am unsure about this notion of ectopics being “benign” when they are frequent, all day, every day. My first 24h ECGs were “only” 200-300 in 24h ie <1% and I was duly fed up with sing-song voices telling me “nothing to worry about”. So I went along with that but over time it got worse and now I may be developing AF. The cardiologist has referred me to an EP and I’ve also bought a Kardia as he said it would be OK to email the readings if I caught another AF episode on it.

As for all these lifestyle suggestions, I’ve tried them all and nothing has helped. All the breathing exercises, no caffeine, no alcohol, magnesium supplements, blah blah blah …. hasn’t made one jot of difference. If only!

I was advised that my EP appointment would be around Dec-Feb because of the pandemic and the waiting lists etc but the cardiologist wasn’t all that bothered. They seem to believe it’s just “a nuisance” and the problem is more that we are aware of it and possibly unsettled by it, but when it’s all day every day, it really can impact on quality of life. I don’t think it’s “benign” when it’s frequent because after a certain threshold I can’t see how the heart can pump effectively when it’s firing off erratic beats 15-20 times a minute, especially after several years. I think that’s why I may have developed AF. I’m sure it’s more complicated than that, but that’s been my trajectory from what I can tell.

At the very minimum you should see an arrhythmia nurse if you have a long wait for a cardiology appointment. I might push my GP for just one appointment at the arrhythmia clinic because all I had was one follow up appointment with the cardiologist and that was it. I understand demand is high but I’m left somewhat in limbo although I suppose this is the reality of the post-pandemic backlog. This piecemeal health care doesn’t exactly help us cope.

stargazey profile image
stargazey in reply to Autumn_Leaves

Hello AL, hope you are as well as can be and haven't had more episodes. Any luck with cardiologist appt? I saw my GP I think he forgot to refer me to cardiologist. He said I'd been diagnosed with chronotropic incompetence a couple of years ago so why the hell doesn't someone do someone do something to help me? I've had other problems though - like reduced kidney function, alopecia areata, bile reflux. To be honest I'm beginning not to care what happens - I feel like I've had my life and now its nearly over anyway. Don't get me wrong - I don't want to go but if I do so be it. I might be 75 but I'm not frail or demented. Was told I had "high to superior cognitive functioning" but that's not always a good thing because you think too much and have to know things. Aaah well....

Autumn_Leaves profile image
Autumn_Leaves in reply to stargazey

I’m still waiting and it could be a few more months because of the backlog and shortage of appointments. I feel left in limbo with only the beta blockers and to some extent I feel like I am self medicating as cardiologist said increase dose to 5mg but the GP is of the option that people don’t necessarily need to be on beta blockers indefinitely. I was about to cut down my dose to half a tablet and then I had my second episode of AF and another episode 36 hours later with a lot of ectopics in between, so how do I know what to do for the best? My BP is around 90/60 and goes lower so I don’t think there’s much leeway to increase the Bisoprolol, though an extra dose as PIP has settled what my watch tells me is AF. I haven’t taken an extra dose to calm the ectopics. In February, a locum GP told me they don’t prevent ectopics, just rate control and ordered a 24h ECG but there were no AF episodes picked up when I had it. Plenty of ectopics, mind you. So it’s like constantly going back to square one. The more opinions you seek, the more confusing it can become.

stargazey profile image
stargazey in reply to Autumn_Leaves

Hello again AL, sounds much like me with the low BP - I was 97/54 this morning. I've had flutters and thumps all night night but my flutters are constant and at the top of my stomach. I think mine are at least partially stomach related. I havexa hiatus hernia, bile reflux, etc etc. My GP is so unconcerned yet it's ruining my life, sometimes i feel as if i haven't got one. One thing I have noticed, and don't know if you are the same - they are so much worse when I'm sitting down or reclining. Have you thought about seeing a private cardiologist- i would but where i live there is zero choice, one private hospital in 80 miles so they can charge what they like and they do.

Autumn_Leaves profile image
Autumn_Leaves in reply to stargazey

I’ve thought about private appointments but affordability is a huge barrier. My local NHS hospital is a good one but the waiting lists and pandemic backlog means the waiting times are much longer now. The problem I have is what to do for the best. Do I persevere with medication? Do I meet the criteria ie ectopic burden threshold for ablation? (Probably not.) And then there’s the AF issue which is so far unconfirmed. It’s as if I have to be my own clinician and I’m woefully underqualified for that! Meanwhile the ectopics go on and on. This afternoon I had a lot of trigemeny as well as lots of individual ectopics. It’s constant. I really don’t know how people in permanent AF cope as that is certainly far worse and of greater concern. I don’t think I’ve found anything helpful. I used to think eating triggered it, then I thought going too long without eating triggered in, but I don’t think anything does, and so far I haven’t found self help suggestions effective at all.

One of the GPs at the surgery has queried my repeat prescription for Bisoprolol so I’m supposed to ring, so I might as well use that as an opportunity to bring up my concerns. I would very much like an appointment at the arrhythmia clinic just to get advice on how to manage this, given that I have almost certainly been in AF several times during the previous 8-9 months. I can show what the watch picked up at least. Even if it’s not a diagnostic tool it shows an awful lot of irregularity and a too high HR as it was happening. I also have mitral valve regurgitation that showed up on the echo. In the past it was “everyone has that” but now the consultant said it should be checked every 2-3 years as it seems to be causing enlargement of the left atrium. I think this tends to occur with AF in many cases. I don’t know how I’m supposed to manage all of this on my own with a packet of beta blockers and no one to explain things properly at all. So I’ll bring this up with the GP when I ring to find out what this prescription issue is all about.

stargazey profile image
stargazey in reply to Autumn_Leaves

Hi Autumn, i don't know what we are supposed to do either. Can i ask how old you are? I'm sure they hate it when we ask questions or show that we have some knowledge. If they are querying Bisoprolol then they should be querying the reason, they must know you aren't taking it for fun. I've got a leaky valve and diastolic dysfunction but "everyone has that at your age".

Having said this it must be must be hard for GPs as well because they haven't got the means to do a proper diagnosis in the surgery and waitig lists are so long. My GP says he will write to the cardiologist for advice and he's referred me for a CT scan but that could be refused. I'm suffering alot tonight - BP all over the shop, alot of chest pain but could be reflux, how do we know. We can't just keep tipping up at the hospital to sit for 12 hours to be sent home. I'm 75 and sometimes i think whatever happens then so be it. If i die so what because i feel so bad sometimes. Didn't help slipping downstairs last week, nreally shook myself up and hurt my back and shoulder.

Autumn_Leaves profile image
Autumn_Leaves in reply to stargazey

I rang the BHF helpline last week and spoke to a cardiac nurse. She said ectopics and AF are two different things entirely. We talked about increasing the BB dose to keep them under control but as my BP was about 88/58 last week I don’t think that’s an option. Anyway, rang GP’s surgery re the bisoprolol prescription but I only managed to speak to the nurse practitioner who advised me to take my BP readings for a week then ring for a GP appointment with my info and maybe they can ask the cardio department about what they can advise. So, I’m still stuck in limbo for another week. I turned 60 this year and wasn’t planning on going anywhere soon, lol. All I want is an effective and safe medication. Some people find a low dose BB effective but I can’t say they’ve had that effect on me. The cardiologist in his letter to my GP described the ectopics as “breakthrough” symptoms. I’d hardly call every third or fourth beat “breakthrough”, more like “ineffective”. I do have hours here and there where it settles for a bit but then the frequent, relentless ectopics rev up again. I don’t have reflux or anything like that but I get a sort of “butterflies” feeling in the upper chest when I’m in frequent ectopic mode. I’ve sometimes wondered whether it’s digestive or this “vagal” thing people go on about on here. But… I’ve tried all the vagal self help suggestions but to no avail. I have run out of self help measures to try.

MikeThePike profile image
MikeThePike in reply to Malayabalaya

Hi Malayabalaya, when you say they have disappeared what exactly do you mean? Do they no longer show on your ECG chart or do you just no longer feel them?

Meeshell1 profile image
Meeshell1

Hi, that is around 11 per minute, which I have probably had and more. Mine were continuous. PVCs. It did not raise undue concern but the 2.5 Bisoprolol I take has reduced the burden a lot, sometimes to having none. I take it your heart is healthy with no disease, with normal blood pressure and BPMs. In which case I would not worry too much.

stargazey profile image
stargazey in reply to Meeshell1

I think I will ask for lowest Bisoprolol which is just 1.25, BP is quite low no blockages. Thank you.

ETHEL103 profile image
ETHEL103

Hi I had bigeminy for weeks don't know ow how many that was but of course it was every other beat.Just awful.Verapimil helped but all the deep breathing exercises in the world did nothing.After ablation much better but still get a few every day.

MikeThePike profile image
MikeThePike in reply to ETHEL103

Hi Ethel, would you mind telling us a bit more about your ablation experience and how long ago you had it? Did you have the ablation specifically for the ectopics? How many ectopics were you having each day and how many do you have now? I have had ectopics for 8 months now. My ectopic burden is just under 1% but unfortunately I feel every one. I'm living with them for now but weighing up my options for the future. Thanks.

Jeff1943 profile image
Jeff1943

I had 10% missed beats after catching Covid, it's quite a common after effect I have read, I started taking two 200mg Magnesium Citrate tablets each day. A week or so later the missed beats stopped. Then 5 months later they started again, was still taking the magnesium citrate. After 4 months they stopped and heartbeats returned to normal and have remained so for the past 4 months.I've mentioned this before, sorry for the repetition if you've read it before. Cardiologists have been known to recommend it. If you decide to try it do speak to your cardiologist or doctor first.

Zee_ profile image
Zee_

Hi there,I don't have documented proof that my burden is that high, however I am almost certain my burden has increased substantially in the past year to I'd say 5,000 PACS a day on bad days (last year <1% on 24 hr monitor, but this year I was given 30 day event monitor which didn't seem to measure the burden like I asked for - whole different story). I completely understand your concern for the increasing burden.

My question for you is, do you feel them all? And what are you currently doing/taking for them if not on beta blocker?

MikeThePike profile image
MikeThePike in reply to Zee_

Hi Zee_, I'm interested to know if you feel them, how long you have had them and if you can remember when they started. I note that you had a 24hr monitor fitted last year. Its possible that your burden was never really that low to begin with. To get an accurate measure of burden you need a much longer monitor period. I find that with my PVCs some days I have hardly any but other days I feel them constantly. I have noticed that I don't feel them as much or the same way I did at first. In the beginning I felt them in my throat but something happened after I had a CT scan with a dose of metoprolol. A few days after I stopped feeling them in my throat but instead just a mild thump in the middle of my chest. I actually prefer that now but wondering if it will change again the future. The heart seems to keep remodelling itself which may explain why ectopics come and go. Have you taken any medication for them? I have avoided doing so myself. Some people on this forum say beta blockers make the problem worse while others say bisoprolol or flecainide works for them. Personally I would prefer an ablation if my symptoms get much worse over the years. I don't like the idea of beta blockers for ectopics. They were not designed for that purpose.

Zee_ profile image
Zee_ in reply to MikeThePike

Hi there,I started having them in March 2020 but considerably worse in January 2021 and has been that way ever since. I feel all of them, mostly in my chest and stomach. I have tried metoprolol but it didn’t agree with me. I’m now on a low dose of propranolol. It works a little sometimes. I, too, have days where I hardly have any and then other days in the thousands. I’m a 31 yo female for reference. My quality of life has diminished so much at a young age. I’m honestly to the point where I want an ablation too, but my EP acts like what I’m experiencing is trivial. What are you currently doing to help yours?

MikeThePike profile image
MikeThePike in reply to Zee_

Hi Zee_, I really feel for you. I'm a 49 yo male and I experience PVCs and PACs. Mine started 8 months ago. I can remember the exact moment they started. They were triggered by a very strange heart complication that occurred in the middle of the night. It all started after I took the flu vaccine for the first time. I can't be sure and will never know for sure but I think the flu vaccine caused some kind of cardiovascular upset which ultimately resulted in my heart 'breaking down' and causing this arrhythmia.

Do you recall how yours started? On this forum and others many previously healthy women have reported developing PVCs and PACs after giving birth. Child birth causes a lot of stress on the heart and cardio vascular system. I really wish cardiologists would investigate this link as it may provide a clue to a cure.

Anyway, a 72 hour monitor revealed a total ectopic burden of less than 1%. I still feel them though. I declined beta blockers and am learning to live with them but I am preparing myself for the day I may want/need an ablation by learning as much about the procedure as I can. If your EP is not helping you then maybe you should find another.

I totally get that ablation is not a risk free operation but it is currently the only known potential cure for ectopic heartbeats. Some medical journals report up to 90% success rates for ablation and many cardiologists now recommend ablation as first line treatment for arrhythmia such as A-Fib and other Tachycardias. Ablation is now a very common, well understood and advanced technique. Most patients can go home the same day! I wish EPs were more sympathetic to the needs of patients suffering with constant ectopics. As I write this I'm feeling them now!

Zee_ profile image
Zee_ in reply to MikeThePike

Very interesting that you say you suspect the flu vaccine started yours. I actually got the flu vaccine for the very first time in January 2020 for a job that required it and then my ectopics started in March of the same year like I previously mentioned. I did have some kind of viral respiratory infection in early March 2020 also, so it could have been from that. I really don't know. But I cannot understand for the life of me why they got worse a year later (Jan 2021). I don't recall anything that could have set it off then. I just came home one day from running errands and my heart was going crazy and then normalcy was history at that point.

I have not had any children, but there is a hormonal link to it I believe since it gets much worse around certain parts of my cycle. I'm experiencing a massive uptick at the moment. It's driving me insane and causing a great deal of anxiety and depression. I think I will look for another EP. I'm trying eveything I can to help this problem go away, but I'm truly running out of options at this point. I agree that ablation is not risk-free, but when you've exhausted all efforts it seems that it could be the golden ticket.

Niki_ profile image
Niki_ in reply to Zee_

I notice a huge hormonal correlation !

Zee_ profile image
Zee_ in reply to Niki_

Absolutely! I just don't understand WHY all of a sudden? It baffles me.

Niki_ profile image
Niki_ in reply to Zee_

Hopefully you get further with your dr’s than I did! All my progress I made 100% on my own .. it seems like most dr’s are only interested in throwing medication at people. No one is looking for root cause anymore

Zee_ profile image
Zee_ in reply to Niki_

You’re so right about that. I’m at my whits end with this. I do better for a couple weeks then I’m back to debilitating PACs. And they’re SO resistant to everything I try it seems.

Autumn_Leaves profile image
Autumn_Leaves in reply to Zee_

Definitely a connection with viral illnesses. I went from occasional ectopics ie several per day to hundreds per day during and after a respiratory virus 10 years ago. It stayed like that until about 3-4 years ago when it got really bad after flu and didn’t get better. So I went from about 200 to several thousand per day, all the time, and since last Xmas episodes of unconfirmed AF, picked up on my Apple Watch which doesn’t constitute a diagnosis in itself. Several years ago I saw an arrhythmia nurse and I seem to recall she said frequent ectopics can lead to AF in some people. That doesn’t appear to be a majority opinion though, as we’re told ectopics are “harmless” but I think it’s a lot more nuanced and that a high ectopic burden could indicate a higher risk for developing AF. I don’t think <1% is a risk, and I don’t think people should be alarmed unnecessarily, it’s a question of severity. I’ve known of people in permanent trigenemy for example, and it’s 24 hours a day, which worked out at about a 30%+ ectopic burden, so that’s something that needs to be treated because I don’t think that can be good for anyone long term.

Niki_ profile image
Niki_

Hi, I had a PVC burden of 13.9% of all nests being PVC’s on my 24 hour monitor .. I changed my eating to clean eating (lots of fruits and vegetables) I reduced my refined carbohydrate ( rice,bread, crackers etc) intake to almost none..) I started taking Taurine and magnesium glycinate..and making sure I drink a lot of water.. I also started doing 30 mins of cardio 4 days a week… on the next monitor they were down to 4% ….

MikeThePike profile image
MikeThePike in reply to Niki_

Well done Niki_. I really admire people who take charge of their health and proactively seek to improve it. I have heard a lot about magnesium in relation to ectopics. I actually bought a few magnesium tablets myself but I found that they gave me mild headaches so I stopped. Perhaps my body just needed to get used to them. I really didn't take them long enough to prove if either the headaches or ectopics would stop so perhaps I need to be brave and start taking them again. The only thing I would say is that it's important to know if there are any dangers associated with taking hundreds of miligrams of magnesium everyday. From what I read those are the sort of quantities which some people are taking to combat ectopics. How does the human body process Magnesium? Does it excrete whats leftover or does it build up over time? These are questions I want to research.

I am intrigued though by your success in reducing your PVC burden. May I ask what specific tablets you are taking and the quantity?

Niki_ profile image
Niki_ in reply to MikeThePike

I have taken several different brands of magnesium the one that helped the most is magnesium glycinate.. what I feel helps the most is taurine. I only take 500 mg of magnesium which is a normal amount to take .. taurine I take 4000 mg 2000 as soon as I wake up and then 1000 in the afternoon and 1000 before bed.. there are many studies in taurine and PVCs and PACs There are no negative side effects for the taurine found even at doses as high as 20,000 mg a day. Although I wouldn’t take that much. I guarantee your dr will tell you not to take any supplements. As did mine.. however after seeing my results he applauded me.. but he was still not very interested in the details of what and how much I took. There is no money to be made by dr’s in natural treatments.

Zee_ profile image
Zee_ in reply to Niki_

Does the taurine ever make you feel lightheaded or drop your bp/heart rate at all? I feel like when I’ve taken it, it does that to me sometimes. That’s partly why I haven’t stuck with it.

Niki_ profile image
Niki_ in reply to Zee_

No it’s never done that to me, but we all have different make ups so definitely listen to your body💛

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