Hi! New to posting here, but see there are others like me who just are wondering what the heck is going on, so even though I know no one's journey is exactly like anyone else's, I'm going to throw mine out there just to see what bites.
Started having palpitations, which I now know are PVCs, around the same time as I hit menopause and was diagnosed with low thyroid/started taking thyroid medication--16 years ago. I assumed it was the medication causing them, and because at least initially I felt so much better on medication, I didn't say anything. Ignorantly, I feared they'd take the medication away, and they didn't really bother me, almost made me feel more alert after several months of blinding fatigue and dopeyness.
About three years later at my annual "we have to check your levels" visit with the doctor, I had my first EKG. That doc said "aFib" and I went on with life.
The next year a different doc listened again, did an EKG, said, "That's not aFib, those are PVCs." Again, went on with life.
About four years later, I was not feeling that great despite thyroid medication, and started researching how a super slow heart rate affects one. My resting rate was in the 40s at that time, and though I'd run a marathon recently and still ran all year round, was also strength training, I could barely take a lap in the mall without resting. I knew I still had PVCs too but no one seemed concerned about anything I was going through, really.
Then, one day, my chest started hurting badly enough that it made me stop what I was doing for about ten minutes. It didn't fit the heart attack criteria and at 56-ish I would've said it was unlikely, but my brother, an elite athlete, had two heart attacks in his late 40s, the first while on a century bike ride, which he finished. It was only because of the second similar episode two days later that he went to the ER, learned yep, heart attack, with 95% blockage in one artery, 50% in the other. So all bets seemed off, and he agreed, go get checked, so later that day, I did.
It turned out I was in bigeminy when they hooked me up, something I'd never heard of at that point. There was no evidence of a heart attack, but they were either having a slow day, or they actually weren't certain, so they suggested I stay over night, just slide right into tests the next morning.
So, I did, and...no abnormalities. I wore a Holter monitor for 48 hours after that, and paying attention, I realized my chest hurt all the time, it was just a matter of degree.
Monitor suggested a 14-ish percent burden of PVCs.. Cardiologist said you can have an ablation but it might not work, or you can take a beta blocker which will slow your already slowwww heart rate down more. Otherwise, you'll feel like crap but they won't hurt you. I got the prescription, but only took it when things felt particularly bad.
I did ferret out that stress made them worse, so I decided to call it a disability, and just kind of backed off on "career" pursuits, and started working in a way that allowed me more control over my schedule. And it has helped me not feel like my skin was on inside out.
But apparently the PVCs have stayed with me. For the most part, they're just part of the noise I live with, and as I still suffer from fatigue, procrastination, etc. they continue to be a fire of sorts that helps me get moving.
Then in 2023 I was diagnosed with very severe osteoporosis (age 61). Chronic pain became way more "important" tgan the flutter in my chest, but I did notice I started feeling them more again anyway.
Long story shorter, I finally had a new dic suggest maybe I should wear the monitir again. He suggested they don't care until your burden is 30%+ but I was in bigeminy when he listened, so...hmm.
So I wore the monitor for 48 hours as instructed, did all my normal life things. Got the report back on Tuesday but still haven't heard from the referring doc. It's a 24 page report, wayyy more info than in 2016, and I can even understand a little of it.
Basically, as I suspected, I'm pretty much in bigeminy all my waking hours, and no events of any sort while I sleep. In all, I had almost 56,000 ectopic beats, 17 incidents of ventricular tachycardia (which I JUST started noticing this week, before I got the report!) less than 1% PACs.
You can see on the timeline that they start about an hour before I wake up, just a few, but as soon as I'm on my feet, they're a regular thing, not triggered by coffee or food because I take thyroid and wait an hour. I do have a TINY bit of caffeine because I'm as sludgy as a mud slide in the morning, but after that, nothing. My diet us actually as clean as it's ever been since my osteoporosis diagnosis--whole foods, almost no alcohol, never have smoked, very little sugar.
But despite this, as I get moving, so do the PVCS.
One particularly stressful hour (so now I wonder, was I stressed because of my heart or did stress provoke my heart?) I had 2720 PVCs, 55 per minute. It's actually kind of nice to kniw this, because I was SOooo slow, it was like I cannot make myself move faster (I cut hair at a Great Clips, so speed matters ) Now I know--I probably was not all that well oxygenated. Probably I never am, just it was really bad that hour.
They also ramp up with exercise, where first time around they stopped...at least, if I got my heart rate up high enough. I can't run any more so maybe my brisk walking and light strength training wasn't enough?
That's all I've got (except, as I say, three episodes of tachycardia that I've noticed right after getting in bed.)
Anyone farther along on a similar journey? I know age makes everything worse, but this feels a little excessive. I honestly don't feel THAT bad, but everything is relative...I wasn't dealing with pain in 2016.
I did read that severe osteoporosis serns to correlate to/with greater incidence of heart disease (we still don't know why my bones are as bad as they are,) wuth the best guess for why being everybody's favorite: inflammation. But I've been trying to eat an anti-inflammatory diet. That actually might be partly why I don't feel worse? No gluten?
Like I say, no idea what doc will say, but clearly it's not striking him as anything that requires urgent attention.
Thanks for reading and any thoughts/insights. Have a blessed day.
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josephinius1
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With that kind of history, you are at risk of cardiomyopathy. I’m dumbstruck that your medical team are not testing it if either (MRI and CTCA) to check your heart’s structural health and your arteries.
I’d be pushing your team very hard to get on top of the issues. I also have brady and am on beta blockers which make it worse, however the betas are protecting my heart to slow down any structural damage. BBs not only slow the heart but they reduce the force of the beat to protect the heart’s walls. When my risks associated with brady become worse or I start to show greater symptoms, they will insert a pacemaker but I will always remain on bbs to protect my heart.
A strong family history of early cardiac deaths meant I was monitored since my early 30s. I was older than everyone else before anything kicked off with me. I’d had the occasional ectopic my whole life and in my early 50s they kicked into high gear (reaching over 10,000 a day during the worst days). My BP also started to increase suddenly. Monitoring showed bradycardia, pauses, sustained ventricular tachycardia, supraventricular tachycardia, and atrial fibrillation. Subsequent testing showed a left bundle branch block and two leaking valves, but a structurally a healthy heart and arteries. I’ve had genetic testing which was inconclusive, and a range of potential diagnoses. They’ve settled on progressive cardiac conduction disease.
Wow..your case covers just about everything..for someone who is sporty..osteoporosis is very rare..bradycardia and tachycardia also a rarity together...one slows..the other speeds up...about Lbbb...that is a part I know a bit about..having that diagnosis myself...which affects the Ejection fraction..which you have not mentioned at all...having a low EF can cause tachycardia..and you are usually prescribed a BB...and another drug such as Entresto..leaky valves must also be looked at in case they need treatment...you will get replies from others who have more info about the other symptoms..I can suggest an echocardiogram to find out more..about the Lbbb in and case and your EF.
Thanks. I've had multiple MRIs, CTCAs, echos, minors and stress tests. Lets just say I'm very well serviced and closely monitored and very infomred about my condition and future. I didn't mention my EF as its normal. Its the electrics of my heart that are my issues at the moment, aside from the two valves which they're monitoring. I'm on a BB, an antiplatelet and a receptor blocker.
I largely ignore the ectopics. I know they frighten people but I just live with them knowing theyre not deadly. I find them sometimes annoying. Im focussed on living a great life. The conditon will continue to progress but for now, all is good.
My brother, the only other known living family member with the conditon, is not so lucky. He's 18 months older than me and has a defibrillator, a valve replaced and is now being assesed for cardiovascular disease with a 90% blockage and an EF of only 25% and dropping. I'm in good shape and very thankful for that.
Many of us have commented before that many medics do not take this seriously. They call the condition benign or not life threatening and often dismiss it, not realising the profound effect it has on peoples lives with the resultant anxiety only making things worse.
Some people have suggested yoga helps and I wonder if that is not only because it helps anxiety but also posture, as it appears posture has a role to play.
It would be great to do a survey of people who suffer from this, to try to identify common causes, remedies and factors. For example, as regards factors, are people overweight, too much belly fat, underweight, to little exercise, too much exercise . too much worry. Living near sources of EMF, too close to traffic?
The number of studies seems limited. Its not a very glamorous part of the Health business.
I have PVCS day and night! obviously when your heart rate gets high during the day then you start to rest or starting slowing down they kick in and more so as you say at night when going to bed sleep and waking up. All I'm on is tablets, they make me breathless, sleepless and do effect some things but I'm nowhere near the end of my journey.
Everything sets them off.. I've changed my diet, don't drink anything caffeine or fizzy, try to sleep up to 10 hours a night because I know at some point it will wake me up normally after about 3/4 hours of sleep. My job I don't take seriously but I still turn up I'm not in a high position like I used to be so I don't have the stress or worry.
Just listen to your body and try different things anything can set it off, you could be anxious and tuned into it without being aware that you are and that's causing your symptoms because your feelings are getting to your ticker and setting them off.
Thanks for responding. It's all an interesting feedback loop, for sure. I'm starting to think my heart really may be trying to tell me something. I keep overriding the other signals, but it's not because I don't hear them and don't want to respond, it's that I feel like I can't, or I don't know what to do. One cause of ground level anxiety for me is "feeling like a failure," of not contributing, being a waste of space. It's possible my sense of who I am and what I bring to the world is "off"...but it doesn't really matter: objectively, I don't measure up to "normal people" and though I've accepted this, I don't want to lose even more ground, and it feels like my body is just...determined to render me marginally functional at best. (Don't get me started on the impact of severe osteoporosis, another condition docs apparently have no clue about or interest in--and I kind of get why, because for most people, it's "asymptomatic". They wouldn't even know they had it except for "science" and even if they are symptomatic, they're 85+ and aren't moving all that much anyway. A 61 year old active person with the bones of a 90 year old isn't something they can wrap their heads around, but I can tell you, it brings new meaning to the term "bull in a china shop".)
But I'm learning to live with the osteoporosis, as I've been living with the PVCs. I was aware--not because a doctor told me, mind you; the cardiologist I saw 8 years ago never said a word about progression or if they get worse, what could happen, never said check back in periodically, nothing! It's actually been these forums where I see people who have an on-going relationship with a cardiologist that made me wonder, and it was the internet that told me that if you have enough if them, it could be harmful. So I've had it in my mind that I should probably keep an eye on them even if they don't materially affect me much, but except for the new doc who said "over 30 percent", no doc who listens to my heart has even hinted that bigeminy every time they see me might be starting to add up. Well, why would an endocrinologist care, right?
I digress. A lot. Point is, yes, I agree, low-grade anxiety that's nearly written into my DNA, is probably a big player in both osteoporosis and my heart, but if there's anything I can do about it, I don't know what it is. I already pray, I've had lots of counseling/therapy, I exercise, I eat well, I avoid situations where I might be tipped over into a full on panic response...and what more can we do, really? At some point, our bodies will give out.
Just seen your comment about anxiety. I work on the basis that understanding your condition and why you have it is very important, even if nothing can be done.
You might find a post interesting. Whether it helps .....
There is a condition called pervasive anxiety. This post give a reason for some of us having it epicurus.today/truby-king-a...
It may well have no relevance to you. But just in case .... (You don't have been have been "Truby King treated", just not treated properly as a baby)
Hi Henry, Thanks for that article. I was born in 1961, no idea if my parents operated on this principle or not. But "building character" was certainly high on their list.
I had a nurse at a naturopath's office suggest to me last year, when I asked for a referral to someone who could help me with my mechanical issues (vertebral fractures,) if I'd gotten more attention, as a kid, when I was sick...the clear implication to me being, "You just want attention, being sick got you attention; now you're playing at being sick/in pain, so you can get attention again."
She was right in that I was (am) trying to get attention, and my mom did take care of us/me when we were sick pretty well, but in general in my house, you didn't want attention from my dad. And, I definitely remember thinking that my mom's plate was full enough--don't bother her with ___. (My dad would probably have qualified as abusive even by the laxer standards of the 60s-70s.) So, my tendency has been to ignore things until I can't. And it's super irritating, yet still effective, when doctors/medical professionals diss me. Like the people described in the article, I'm hyper-attuned to the slightest whiff of "You're wasting my time," but we operate in a system where apparently, you really have no choice but to nag people, which rarely puts the naggees in a positive frame of mind toward one.
So yeah, this is complex stuff. Thanks again for even reading and taking time to weigh in. Sincerely appreciated.
Yes, it's complicated and this isn't the forum really to discuss anxiety as aa separate topic, just thought it might help you in sorting your way through heart issues. Hope it might give you a few pointers. Sounds like things could be tough when you were a child.
Premature ventricular contractions. So your heart is always pumping blood, right? (If it's not, you die.) It's coming in from one side and getting pumped back out from the other (don't quote me!) and that left ventricle is like the last pump before it gets sent out to the rest of the vessels. With PVCs, the ventricle is only partially filled when it gets a signal to send the blood out, and--I guess--it's not enough to make the journey, but then more blood comes in...?? and the next beat takes care of it. Most of the time, so I read, these are isolated beats and you don't even know it has happened. But if you start having a few at a time, you may feel them as palpitations.
Good morning, I'm not a doctor but here is my opinion. It might be a good idea to push for a treadmill stress test to find out if your pvcs increase or decrease while doing exercise. Also find out from exactly which part of your heart they are originating. From my own experience and reading those of others pvcs don't normally cause pains in the chest unless you are referring to the "thump" you may experience after the extra beat caused by a pvc. That's caused by the heart filling with twice as much blood so the beat appears more forceful, but I don't think that's what you mean. Pains in the chest are indicative of blocked arteries/vessels. I would insist on having echocardiograms and MRI scans done on your heart to properly check your arteries and valves for blockages, leakages and disease. And finally I would look into having a PVC ablation. 55 pvcs a minute is just way too high under any circumstances and 17 incidences of VT is quite concerning. VT is potentially life threatening and needs to be taken more seriously. That kind of frequency could lead to heart damage and reduced Ejection Fraction (causing breathlessness, weakness etc). Again, just my opinion. Good luck and I wish you well.
I'm really surprised that your docs aren't taking your issues more seriously, but as others have said the medical profession does seem to treat your symptoms as non-urgent. But then I'm not a doctor, just a patient who has no medical training or knowledge.
I had PVCs for a number of years then they just stopped. Not really sure why. But I continue to have spells where there are additional beats between the regular ones. When it happens, I feel rubbish and with no energy.
I also had a slow heart rate (low 40s and sometimes lower at night and around 48-52 during the day) and so have always just asked "With my low heart rate, should I be slowing it even more by taking beta blockers"? The conversation then just moves on and they aren't prescribed.
About 9 months ago, I realised my resting heart rate was, during the day, about 5- 10 bpm higher. Why? - I have no idea
To monitor what is going on, I have an oximeter and a Kardia 6L (Amazon £150) linked to my phone so I can take traces of my heart and what it is doing. I find it useful as I the have a record that I can print and show to the docs. (Note: some docs are more sympathetic than others to looking at the traces. I'm lucky that in my practice there is one doc who uses the kardia - he suggested it to me.) I keep an intermittent diary of all that is going on. This gives me the opportunity to spot changes and, with the Kardia, I can record what happened during the night or whenever I feel I need to. I can also take an ecg for up to 5 minutes (usually I take 1 minute). By doing this, I can provide evidence of what is happening on an intermittent/rare basis.
(The Kardia also provides a "possible Afib" warning. I'm far from sure how accurate this warning is so don't go to the docs if it appears - its very, very rare for me to see it.)
It seems to me that you've had a lot to contend with - perhaps the medics will actaully do something if presented with a bit of written evidence.
I've suffered with various heart and pulmonary problems for about 10 years now. I believe the best doctor we have is our immune system ( which doesn't charge us anything )
I find the list of medicines and procedures offered by the medical profession quite bewildering and while I do take some basic medications such as anti-hypertensives and bronchodilators, I find that listening to my body, relaxation, and mind fullness ( just be still ) has and does help more than anything else.
I had a bout of afib over 4yrs ago which lasted 1 hour. Subsequent tests, EKG, Monitor, Echo al good until echo, which incidentally discovered aortic root aneurysm. Had surgery and a few bouts of afib which is common after big surgery like that. Meds: beta blocker (I don’t have high bp) just precautionary, daily aspirin and nexium. Months later I started experiencing PVC’s. Monitor revealed as many as 20,000 daily. Lay down and mostly go away. Doc not concerned. BUT I AM wtf ?
Doing my own research I discovered that long term nexium use may be the culprit because it what it does to one’s magnesium absorption. On subsequent visit or follow up I asked if taking Mg supplement would help or harm. They said no harm, give it a try within reasonable dosage so I did. After a week PVC’s subsided and have been non existent for 8 months and counting.
I ask myself why didn’t docs mention the Mg issue prior, especially since they prescribed the nexium. It’s common knowledge that it can be an issue but nobody mentioned it .
Mg glycinate MIGHT work. Next blood test have them look at it.
My personal experience as an ex-athlete with a 25% PVC burden and a smattering of PACs & SVT, I was told I had paroxysmal AF but nothing on the last 3 monitors. No family cardiac history beyond the usual BP & statins, usually fit and healthy, resting HR high 40's/low 50's, BP slightly raised.
I had nearly 2 years of feeling rough, no energy, exercise intolerance, disturbed sleep, cold hands/feet, "corned beef legs" and breathlessness. Then I developed a wet cough - dismissed by my GP as a virus, it turned out to be pulmonary oedema. I was having periods of up to an hour of bigeminy that was allowing my lungs to get wet. I couldn't breath when laid on my side, I still can't breath when laid on my right - haven't worked that out yet, may be hiatal hernia.
I had to go private, NHS clinicians kept telling me it "was common in women your age", it's anxiety, palpitations are common in menopause (though we have a family history of late menopause and I was only 45 with no symptoms).
First thing I did was get an echo, treadmill test and cardiac perfusion stress MRI to check my heart structure and get ejection fraction - all good-ish (under for age and athletic history but OK).
I reviewed my nutrition to find my folate and vitD were very low and MCV too high. I topped up ferritin, folate, VitD and magnesium until they were towards the top of the reference range on blood test. Took 4 months of supplements and and diet changes and I'm still going.
I also take taurine and l-arginine - Google "taurine and PVCs", there's a good PubMed paper on it, and have my U&E checked frequently (CKD3) and it tells me my electrolytes are good. I don't consume alcohol or caffeine, and I stay hydrated.
I was prescribed Bisoprolol, titrated to 7.5mg/day, which put me back in normal sinus rhythm but flared my Raynauds, made my hiatal hernia worse with severe epigastric and rib pain, turned me into a zombie, stopped me from sleeping, constipated me, caused stabbing headaches, increased my serum creatinine - I already have kidney damage, and at 7.5mg/day made my hair fall out. (I was considered for Flecainide but that letter is still at the hospital waiting to be typed up.)
Since making these nutritional changes my BP has greatly reduced (arginine is a Nitric Oxide agonist/vasodilator) and my PVC burden is now around 0.6-0.8% per day. I've taken only 1.25mg Bisoprolol for the last 4 weeks and nothing at all yesterday - slept solidly last night. This morning I've felt nothing from my heart, although my stomach is still sore.
It's worth looking at diet & lifestyle, getting bloods done - I used MediChecks Advanced Well Woman tests. Consider an echocardiogram or even better an MRI. There's a FaceBook group of around 15k people with PVCs "Heart Arrhythmias, PVCs PACs AF and Others Sharing and Help Group", which is full of great advice and ideas. And search for "York Cardiology" on YouTube.
I've learned that your heart needs very specific nutrition. The FB group is full of people working on their personal "recipes". It's very important to get medical tests done to assess your risk of heart failure; it takes less than a year of a high burden to start weakening heart muscles.
Technology wise, I have a Fourth Frontier chest strap which does a 24 hour ECG - report available on their portal, or can live stream your ECG to your phone for an hour, plus all the regular stuff a quality HR monitor does. It's how I've managed to track the reduction in burden as I've progressed with my "recipe". I also use a Samsung Galaxy watch. Other popular ECG wearables are Wellue straps and Apple Watch.
I have not yet studied hormones - peri and menopause. Many women in the group have reported an improvement in heart rhythm after finding suitable HRT - though accessing that HRT has been a challenge for some. At 48 yr old that is my next mission, I was so ill that I'm scared to go backwards as menopause approaches.
Wow, you're so young for all of that, but thank you!
I've already done quite a lot of the things you mention, as I've been in the osteoporosis rabbit hole for a year now and I tried anything that offered help to bones. I'm still taking magnesium glycinate, kind of dropped off the taurine but I still have some. I don't take calcium (though doc recommended 1500 mg (we really go for it here in the US,) preferably from food he said, but after listening to a York Cardiology video today, I'm not even sure 1500 from food is advisable. I do taje 180 (units, mcg? don't know, anyway, the "heart dosage" amount,) of Vit K2 MK7. Up to now, I wasn't too worried (worried is a strong word, but you get what I mean,) about my blood/urine calcium levels because they're not officially high...just kind of borderline--but Dr Gupta(?) I think suggested that normal blood calcium doesn't mean you're not building up some blockages on your arteries. Plus, Dr Google says hypercalcemia can trigger PVCS, and it's definitely a culprit in osteoporosis, so...hmm. Guess we'll see. Am currently waiting on blood tests for this year, as well as urine calcium and my first bone marker. I have been doing my bones the natural way against the better judgement of the docs, but Fosamax (which I took briefly) really fired up the PVCs, to which my then PCP casually admitted was definitely a side effect of that drug. Endocrinologist wanted Evenity (which has a black box warning for heart attack/stroke,) but insurance denied it. So Reclast was his next choice (you probably aren't familiar with osteoporosis meds, no matter,) which, if anything, appears to be Fosamax on steroids in terms of its affect on the heart, so at the moment, I'm feeling pretty good about my decision to at least wait. It might be fine for someone who doesn't already have noticeable palpitations, but after seeing that I was averaging 1165 ectopic beats per hour, and at worst had 3,362...I really don't want more. And it seems like it IS something docs should consider before prescribing. But maybe I already said that in my original post.
I'll have to reread your post, but...suffice it to say, it IS nice to hear from people who've been down this road, and to know, it could be worse. And, I'm sorry for all you've been through. (Nexium is bad for the bones, too. 😞)
Dr. Gupta's lovely, an NHS consultant, he's part of a team in the UK that takes an holistic approach to medicine. There's increasing movement towards supplementation and lifestyle changes rather than drugs here, bit of a backlash against pharma in a lot of the communities I'm in.
How bad is your osteo? Looking at the drugs you mention it looks beyond lifestyle changes? Fosamax has just had a warning published in Australia too providing extra guidelines for clinicians. Looks heavy duty. Interestingly, the NHS website mentions nothing. I encountered this with Flecainide though, it's black labelled in the US, but here we test everyone for ischaemia before prescribing so the risks are limited and most people do very well on it, our protocols are different.
Is Fosamax the one where you have to sit upright for 30mins after taking? My MIL(89) is on something like that for her osteoporosis and I've not asked if it's effected her AF, she's on Bisoprolol as well. She's monitored frequently by her GP.
I did learn that your heart is sensitive to calcium levels but it's never something I needed to look at until recently and only in the context of very low VitD, ferritin & folate. You've got a lot of ectopics there, I agree with your watchful waiting approach, making them worse will be miserable, they can really knock your socks off.
Have you had your vitD checked? Plenty of VitD encourages uptake of calcium in to bones, gets it out of your serum/urine. Dr. John Campbell on YT has done a lot of work on vitamin D, if you search "vit D" on his channel there's a video called "How much vitamin D should I take?", it's not just that, it's a review of several studies covering bone and cardiovascular health, as well as its role in improving dementia and immunity, an hour but very informative.
Absolutely right about Nexium! I've been prescribed ranitidine and then omeprazole since my 20's - I should have had the hernia surgery but I was scared back then. I'm fortunate to have done plenty of weight bearing exercise throughout my life so I carry a lot of bone. I'm worried about the increased risk of dementia with prolonged PPI use now. Pretty awful drug considering is so readily available, we can buy it in supermarkets in the UK.
Probably. Anxiety seems to be written into my DNA, so knit into how I do life, I don't usually even know it. I couldn't even begin to know how to deal with that. Beyond that, I already have a lot of anxiety/stress reducing practices, like exercising/being outside, getting my heart rate up, journaling, prayer, eating reasonably well, not drinking, very little caffeine and only in the morning, etc.
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