It has been a while, but I keep popping in from time to time to see what is going on in the AF community.
Quick update. After an unsteady (PAF diagnosis ) 2020, I made some adjustments & settled back into life with PAF popping up now & then. My Pill in Pocket flecanide works for me 🙏
But 10 days ago I went into a rhythm my cardiologist says is trigenimy PAF. Now, like most people I have always had these, but it has stayed for 10 days without a normal sinus rhythm. He increased my beta blockers & said get on with it.
But I really feel out of sorts. It actually feels worse than AF in that every 3 beats a get a ‘boom’ & well it just feels like it’s here to stay!
So questions
Does anyone else have this permanently?
My Apple Watch can only pick up AF so going to purchase a devise is kardia the best?
Do you just exercise as normal?
3 ago I had a borderline panic overactive thyroid blood result - awaiting GP - anyone else with this & rhythm issues?
Ps I am very health aware, reduced stimulants, eat well, supplement magnesium taurate.
thank you as always. Rachel 🥰
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So sorry to hear that Rachel, my understanding is that trigenimy is a PVC - premature ventricular contraction and are not usually considered dangerous but having experienced occasional PVC’s during recovery from ablation I know how miserable they can make you feel.
If you have a an over or under active thyroid this may be the cause so treating thyroid, if you have a problem, may well result in a lessening or even curing the pesky things.
There have been a few threads for trigenimy and I believe that a few people have undergone ablation when it has persisted and nothing else works and is reducing your QOL.
It has always been my understanding that unless you are specifically told not to drive or exercise you are not putting yourself in danger however you be should be body aware and not push yourself so a good rule of thumb is to be able to speak in full sentences whilst exercising and pause and rest if you have any symptoms which make you feel ill.
I know when I suffered PVC’s they were often made a lot worse if I bent over or down.
Hey CD thank you for your response as always. Mine are atrial trigenimy (I will look up previous posts too). So a PAC. Yes damn pesky & keeps me awake too adding to the burden.
Waiting on GP appmt re thyroid. If it’s not one thing……..🙄
I like the Kardia, useful to collect information but can be easy to become a bit obsessive so handle with care and restrict usage. I have the 6 Lead but to be honest I find the 1L gives more than enough information for me.
My Apple Watch can only pick up AF so going to purchase a devise is kardia the best?
Save your money. Neither device will actually tell you you're in trigeminy in so many words.
However, both devices will show trigeminy on the EKG. And it's very easy to spot -- you will see two normal looking bests (QRS complexes) followed by a short (premature) beat. That's trigeminy.
While botherdome, it is considered less serious than atrial fibrillation and may not always need treatment or lifestyle restrictions, including exercise. But the best person to guide you here would be an electrophysiologist or a well-versed cardiologist. GP's, at least in the United States are not very well-versed in arrhythmias.
Ahhh thanks Jim that’s £150 quid saved! Yes I can see the trigeniny clearly. My Apple now just says inconclusive no NSR at all! My cardiologist is fab. I will message him in a few weeks if we are still stuck ‘on’ & see what he says. Plus the thyroid issue under control. My surgery was put on hold 2 years back as I was asymptomatic & I have to have surgery as opposed to catheter because I had a closure of an ASD & have an occluder in my atrium! Sl
I purchased a Kardia 6L, v easy to use but to you may have to pay more to upgrade to catch more information for yourself/cardiologist. I have had limited info from it.
I only sent my cardiologist one report and he replied saying get an ECG at your GP surgery. So I now use it hardly at all.
Have you taken flecainide for the trigeminy? I suffer from bigeminy and really frustrating couplets - all of which are atrial (PACs). 100mg of flecainide works for me. The PACs usually go, or significantly reduce, within 2 hours of taking flecainide. My cardiologist is fully aware that I use flecainide to combat my PACs.
Thanks John - I asked but he told me not to take it 😔 I too thought it might have helped settle it & back to normal. He told me to double my BB. Whilst it has reduced the ‘thumps’ it has reduced my HR a bit too low. I am in the 50s anyway & it’s dropping into 40s. 🤷🏼♀️
Hi, I have had atrial bigeminy or similar a few times. I found that while I was still it started up but if I moved around and raised my HR a bit it stopped. So maybe, in the same way that AF is sometimes ‘allowed in’ by a slow HR, Bi and trigeminies are the same. If you exercise and raise your HR to normal - 60 or above - and it stops you have found the trigger. Just a mad thought but anything not harmful is worth trying. I couldn’t function with an HR in the 50s.
Hi, I have PAF treated with Flecainide (daily) and PVCs are usually around to some degree. Some weeks I don’t notice or detect them, other weeks they are more prevalent. They are usually singular but occasionally bi or tri creep in. In the early days, they were investigated by my cardiologist but the burden was low ( not to my perception though); he wasn’t concerned and told me just to get on with life.
I exercise normally, I am quite fit and healthy and run/cycle/climb regularly each week. Generally speaking with a raised HR, I don’t detect ectopics. However, this morning I did a 40km bike ride and noticed a ‘bang’ but just ignored it; as usual.
I have a beta blocker as part of a PIP (never used) but don’t take it regularly. Like you mentioned, it drops HR, and mine is low anyway. Routinely my HR is 40 bpm in the evening. I don’t suffer any adverse affect , so it’s just normal to me - carry on! GP did say that with a low HR, the inter beat intervals are long enough for your heart to throw extra beats in; maybe it’s getting bored! 😀
I have a Kardiamobile 6L, which I purchased in the early days; post diagnosis. While I was getting to grips with my new conditions, it was a useful tool ( I rate it) but now I don’t bother with it too much ( can be addictive). The device doesn’t determine ectopics (unless you subscribe to the additional services) but with a little research into reading a EKG trace, you can easily see them. I am pretty body-aware and can detect most ectopics and any Afib without tech, which is just telling me something I already know.
I feel the ectopics for me are now manageable most of the time and generally don’t affect my QOL. I don’t know if they will ever be solved but stress/anxiety are definitely catalysts and a multiplier. You mentioned being kept awake by them. In the early days, I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep/rest. Anxiety just enforced a negative feedback loop that descended into more ectopics. I turned to a course of cognitive behaviour therapy/mindfulness and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.
I always say this but I don’t quite know how CBT works but my mind set is just different - I don’t get dragged down into unhelpful thought processes or behaviours when ectopics happen. In fact last night, I noticed a number of bumps before bed and in bed. I just don’t focus on them anymore - “ yeah, ok, not gonna kill you” - yawn, turnover, night-night. If you are troubled and haven’t already explored your mental health then I’d always say, maybe give it a try. The mind is very powerful and has great influence are physical responses.
Ahhhh thank you. I am actually a psychotherapist & know all too well the neg affects the mind has on our health. As a healthy therapist I look after my mind by having therapy. I can’t look after others if I don’t look after myself. Anyhoo I like what you said about getting stuck in the loop with sleep, & having a different approach there is something I am considering.
I was a bit addicted to the Apple Watch in the early days but less so now, & like you I know exactly the point I go into AF!
I get trigeminy now and again along with many kinds of atrial ectopics and for much of the time these days, but not permanently (although it feels like that at times). I agree completely that they can feel worse, and be much more wearing, than AF. The "bump" from them is never easy to cope with, for sure. Yesterday was awful in that respect.
I don't think Kardia will give you much more information than the Apple Watch in a way, since the look of the trace itself would make clear that trigeminy is happening and trigeminy isn't in the list of arrhythmias that Kardia flags up in its results.
I have been using two other home ECGs that do label trigeminy, one by Wellue, which has an AI facility to diagnose lots of arrhythmias, but needs a phone or laptop, and the other, a new 6-lead version, made by Contec / Emay, which gives the results on it's built in screen.
I also suffer from Atrial Bigeminy/Trigeminy daily. I am having another ablation to tackle mine. The Wellue device will actually recognize Bigeminy and Trigeminy. The basic one is only about $75. I am so bothered by the PACs, never had Afib, so I can't compare, but my quality of life is horrible when it is bad. The beta blockers made it worse. My heart rate got too slow and I still had the PACs. It actually felt worse when slower. I agree that initially getting my rate up helped. Good advice on here. Best wishes!!
You get a £100 discount at the checkout! (Well, double check that it’s still the case!) About £275 is around the right price at the moment, assuming the “discount”.
I don’t know why they automatically recommend beta blockers for ectopics. I was so disappointed. My follow up 24h ECG showed a couple of thousand less ectopics so that means it “worked”! 😂
Actually they were still just as intrusive and I still felt the same. They sort of reduced of their own accord but since I had Covid they’ve been creeping back in and some days there’s a lot which usually means I’m more vulnerable to AF.
I actually wonder had my high ectopic burden been treated by ablation whether I would have developed AF as they were getting to be all day every day. I rarely had more than 5 beats in sinus rhythm. Who knows? I don’t consider ectopics and AF to be unrelated. My consultant did say it was all part of the spectrum. I was bothered by ectopics for 10 years before it progressed to AF and the ectopics became a problem after a respiratory virus. So I’m wary of viruses now, but they’re an unavoidable part of life. 🤷🏻♀️
I’m with you there, my ectopics certainly feel worse than AF (as I can control my AF!) & for 3 whole weeks no normal sinus rhythm. My reading up is that ectopics certainly are a precursor to AF and can trip into AF or trigger AF for someone like you that didn’t already have AF. Many people have ablation on their ectopic burden alone. Good luck in your journey.
I’d be cautious about taking supplemental iodine though. It can really cause havoc with the thyroid even in people with healthy thyroid function. Likewise I’d steer clear of dessicated thyroid supplements as messing about with what is effectively thyroid hormone can lead to very dangerous arrhythmias. Please everyone, don’t self medicate when it comes to your thyroid. Always treat your thyroid with respect!
I had trigemeny when my ectopic burden was probably at its highest, some months before AF happened for the first time. Every evening I’d go into trigemeny for hours, and at other times it was constant ectopics with no predictable pattern. Just the random, all over the place variety. I had a lot of trigemeny picked up on my 24h ECG at that time but you know how it is, you get the “ectopics are harmless” speech.
I had thyroid tests but I’m totally normal in that respect, so there was nothing there to explain it. In fact every time I’m bothered by AF or ectopics I get “we’ll check your thyroid” and it’s always good.
The Apple Watch will show trigemeny on a recording. It won’t automatically identify it like it does with AF (though that’s not 100% reliable). It’s good enough to take to an appointment or emailing to your cardiology department to get an opinion. I have a Kardia but I don’t pay for extra services, so in that respect the Kardia and the Apple Watch are on par with each other. If you pay the extra you might be told “trigemeny” but I don’t know where you’d go from there.
Your thyroid results may shed some light on this and if you need thyroid medication maybe it could help. Not that anyone wants a diagnosis of anything, but I fully understand the desperation for anything that could make a difference.
Had a further ECG tonight the GP has sent to cardio for advice as I’m still no normal sinus rhythm. My cardiologist already diagnosed the trigenimy & now I can clearly see it on my Apple ECG even though the outcome now says inconclusive.
I’m told my thyroid will be monitored every 2 months for now to see if it rights itself. So for now I have no answers other than an unhappy heart!
At least you’ve got the ball rolling. I’ve just emailed a Kardia trace to the arrhythmia nurses today as I’m having strange random palpitations but they’re not AF or ectopics. I picked up an odd looking waveform but it may have been random noise, so I don’t know. I picked up the same thing on the following reading, so who knows? I’m used to being fobbed off by now! I’ll see what they reckon anyway.
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