Newbie Finding Reassurance

[Finlaysmum]

I literally stumbled on this forum today whilst trying to breathe through yet another round of ectopic beats. I have had daily ectopics for 3.5 months now and yes, have been to AE and had paramedics out several times. GP surgery has been very slow in diagnosis and help - but I have managed to arrange appointments and tests myself as I have been so concerned about what I have going on. I see the cardiologist for the first time this week, and I’m hoping for a way forward. As like many of you my life feels as if it’s been changed and I’ve had to miss and cancel so many things. But reading how so many are going through similar really helps.

[KiwiBlake]

Welcome aboard (from New Zealand). I've only been a member for a few weeks but have already found this forum to be fantastic. Lots of friendly supportive people with a wide range of ages, backgrounds, experiences, and knowledge.

You have stumbled onto the right place

Blake

[Paulbounce]

Hi Fin.

Welcome to the forum.

Right where to start ? First of all your ectopic beats. They are fairly common and most people have them from time to time. I suggest trying breathing exercises - have a Google to find the method for you. I breath in slowly and count to 5 - rinse and repeat breathing out. Just do it slowly and aim for 6 or 7 breaths a minute. It really can help.

Next off. You are seeing your cardiologist this week - great stuff and I'm sure he'll be able to help with a treatment plan. There are many options and I'm sure he or she will go through this with you. Write down any questions you may have so you don't forget to ask - I always do without a list.

Now afib itself - my take is this. The main risk is a stroke but your cardio will likely put you on an anticoagulant to help prevent this. The condition itself (for me personally) is not a fraction as bad as I thought it would be when I was first told. There are far worse illnesses to have - a friend of mine died from cancer in her mid 50s and that put it in perspective for me. Sure it's frustrating at times but with the right mind set you can deal with it.

You wrote

"as like many of you my life feels as if it’s been changed and I’ve had to miss and cancel so many things"

Try not to miss out on things. I've had afib for years on and off and made a few life style changes and feel great atm. I've had my ups and downs as will you - my main problem now is getting breathless at times but it passes. Rather than missing out on things aim to make a few life style changes such as a good diet / stop smoking (if you do) / drink in moderation or stop completely / maintain a healthy weight and do moderate exercise such as walking. I have stopped drinking / lost weight / eat healthy food / try to have a brisk walk every day and don't smoke. I can say since doing all this I have never better. You will too. Turn this negative into a positive by doing these things - you'll likey to feel better and live longer.

So I hope you get some reassurance from this. I wager it will turn out better than you think. @Blake - welcome to the forum as well 😉

Paul

[KiwiBlake in reply to Paulbounce]

Thanks Paul. You've already welcomed me. Remember your bucket list desire to travel to New Zealand! I'll pick you up from the airport!

[Paulbounce in reply to KiwiBlake]

Hi Blake.

Yes I remember ! I'm just on my way to the airport now. It's about a 23.5 hours flight so I'll you see this time tomorrow - when I clear customs I'll look out for you holding a card with Paulbounce on it 😎

Paul

[KiwiBlake in reply to Paulbounce]

Don't forget your sunglasses and sunscreen. We are headed into summer. It's going to be a warm Christmas.

[secondtry]

Paul has already mentioned most of what I would have said. I would just add re 'miss and cancel things' yes lifestyle changes will probably happen and often help AF (!), so don't stay in the mindset I have to get back to 'my old life' it really doesn't help with anxiety and instead look for new opportunities in that changed life.

[Finlaysmum in reply to secondtry]

thank you. Yes, I’m trying to look forward rather than backward. But it’s hard at times.

[secondtry in reply to Finlaysmum]

I'm sure you are doing well, it is tough but the outcome is worth it.

[bassets]

It can take a while to adjust to your new 'normal' but be assured that at some stage, you will. I am an out and out coward, and it took me eighteen months to stop panicking. When I did and got things into perspective, it helped., as anxiety exacerbates AF.

We all know exactly how you feel right now here so please ask anything if you want to.

Best wishes and good luck

[Finlaysmum in reply to bassets]

Thank you. I never had anxiety before. But this year since the start of this I can say I’ve never experienced anything like it. But I am now on meds for that and it helped.

[Ppiman]

I get lots of ectopics, but they do vary. Often they are worse at breakfast and in the evenings, then worst of all just after getting into bed. I have had atrial flutter in 2019 which was treated successfully with ablation, but since have had several few episodes of AF, once only, soon after the ablation, with a very fast, debilitating, rate but the rest feeling much like the ectopics do.

When I was younger, I recall seeing a cardiologist about my ectopic beats and he commented on them to say they were benign and that he had thousands more each day himself and that he expected to live a long and healthy life! Before that another cardiologist told me that my stomach harmlessly pushes my diaphragm into contact with my heart and that that is what might be causing my ectopics.

So - do they matter? It seems not much at all, hence the term "benign" - except, that is for the anxiety they can create. In some people, I know this can become very debilitating, which is such a shame given that it's for no real cause. Anxiety can, for a few, become a monster that can wreak havoc and be really hard to treat - but it truly does need to be helped with things like meditation and similar.

I think some types of ectopic beat are thought, rarely, to be able to precipitate other arrhythmias. In that case, I suppose the heart cells must be predisposed to electrical disturbance issues, perhaps from genetics or from predisposing factors such as drink, tobacco, drugs, obesity, sleep apnoea, diabetes or hypertension. Those seem to be the things that sit alongside AF.

You will gain a deal of reassurance from your coming tests, that is for sure. But I hope that you will come to accept that anxiety is the cause of so many of our woes, rather than the illness itself. Perhaps the now rather old but still wonderful books by the Australian Dr Claire Weekes might help. I found them to be excellent, not at all an answer, but a genuine help.

Steve

[Finlaysmum in reply to Ppiman]

Thank you that is really helpful. I had tests before 4 years ago when I had a bout of them then as my brother died at 47 of a heart attack. I had an echo and angio CT that just showed the ectopics. They settled down. But this year after a period of intense stress they returned. They are worse in the afternoon after lunch for some reason! When I had my echo last week the lady doing the scan explained about the beats when you start to slow down after activity. No one had explained this before which helped. It’s so good to hear that you have learned to live with them. And your advice definitely helps.

[Ppiman in reply to Finlaysmum]

Anxiety is often the key to these issues. The initial effect of the anxiety response is what needs to be dealt with to stop the natural escalation of it, either suddenly to create a "panic attack" or in the way the heightened anxiety causes muscle tension and over-breathing. That initial fear response so easily is missed and cascades quickly or slowly but always with a poor result for the sufferer.

The "post-prandial" (after a meal...) effect you describe sounds like my own. It's either the mechanical action of the stomach and intestines physically touching and affecting the heart; or it is the autonomic nervous system altering to allow digestion to occur (the autonomic nervous system - adrenaline (sympathetic) and acetylcholine (parasympathetic) - is the push-pull balancing system that keeps the body working without any control, from ourselves).

Anxiety is a natural response but easily gets out of hand. Time and a few medical tests have been my own saviour, as they will be for you, I feel sure.

Steve

[Finlaysmum in reply to Ppiman]

that’s so helpful and yes I totally agree. I am doing everything to ease the anxiety. It’s good to hear you are getting on top of it. Thank you

[Auriculaire in reply to Finlaysmum]

Welcome to the forum .I have found magnesium supplementation helps with anxiety. Especially if spread out during the day. Even before I developed afib I had panic attacks for no apparent reason and since taking magnesium they have gone. I am more relaxed during afib episodes now . Sometimes afib has struck the night before setting off on holiday or on holiday. I just carry on as normal - well a bit slower . Hope you find your appointment with the cardiologist reassuring .

[OzRob]

Welcome to the forum!

Your CHA2DS2-VASc Score will determine if you need to be on anticoagulants.

Once you see your cardiologist you will know your CHA2DS2-VASc score and should be offered a 24hr Holter monitor to determine if you have Afib in addition to ectopics.

If you suffer from ectopic beats/Afib after a meal it will usually be Vagal Afib.

If you also suffer from ectopics/Afib at night in bed then that also indicates it will be Vagal Afib,

[Desanthony]

Can't add to what has already been said but just want to wish you all the very best.

[Finlaysmum in reply to Desanthony]

thank you very much 😌

[Autumn_Leaves]

I have a high ectopic burden and more recently developed AF. I have an appointment at the arrhythmia clinic next month so I’ll discuss both problems then but I suspect the priority will be the AF and how I’m going to manage it.

Although I go along with the “benign” explanation of ectopics for most of the time, if someone has a very high ectopic burden it warrants further investigation. Having an ectopic burden of <1% is nothing to worry about but an ectopic burden of 35% might indicate something else is going on. Not necessarily anything imminently dangerous but a symptom of another pathology such as a valve problem. My ectopics became very bad in the couple of years leading up to my first AF episode, so I think there was a connection *for me* but that doesn’t mean ectopics will eventually lead to AF for everyone. In most cases it probably won’t.

We don’t know why some people develop AF. I’m a lifelong skinny type, I’ve never drank much alcohol, my habitual diet is whole food plant based and has been for my entire adult life, my BP had always been at the low end of normal, my cholesterol has always been low, my hbA1c is good, there’s no fat in my liver, no calculi in my gall bladder, I practice time-restricted eating, brew my own kefir…. blah blah blah. I’m such a #¥€#!^* saint, aren’t I? I was doing all of this, all of the time before AF started. It didn’t control or reduce my ectopics. I have the breathing app on my watch, a mindfulness program on my phone, I blast myself with a SAD lamp every morning and put blue light blocking specs on in the evening, and so on and so on. There’s nothing I haven’t tried, so I have to say the lifestyle advice isn’t going to help in my case. Great that it helps others, but I’ve run out of things to try.

The only thing I can think of that might have been one of the root causes of ectopics and AF is iron overload and possibly leading to iron deposits in the heart that could possibly have disrupted the electrics. I have hereditary haemochromatosis, which I’ve discussed with a few others in this community. It won’t apply to everyone, and I don’t know if it even applies to me. All I do know is that breathing exercises and relaxation techniques don’t help, magnesium supplements don’t help, cutting out blah blah… well, what exactly do I have to cut out?

I wouldn’t stop pursuing a healthy lifestyle as far as that’s possible because we still have to look after ourselves no matter what. My advice is don’t suffer in silence. You have a family history so you have every right to have investigations to rule out anything else. It is difficult to come to terms with the reality of an AF diagnosis, but as the good people here have shown, it’s possible to live a normal life once we know what we’re dealing with and how to control it when it happens. If you’ve been through all the tests and you are reassured, if your ectopics get worse in the future then please seek further help and have the tests repeated.

[Finlaysmum in reply to Autumn_Leaves]

Thank you and all very good advice. Sorry to hear yours has recently progressed. Have you had CT angio echo etc? Like you I live a healthy lifestyle don’t drink anymore, never smoked not overweight, bloods were good. I did have a really stressful year before this started which I think possibly tipped the scales. I’m hoping for some advice when I go. I have low BP which I’m told counts me out for Beta blockers. Have you had any meds to assist?

[Autumn_Leaves in reply to Finlaysmum]

I had beta blockers which I didn’t take until after the first AF episode. My BP is low on BBs at 80/56 and typically around 85/58 or thereabouts. So I can’t go any lower. My GP practice could only refer me to cardiology and ask for my appointment to be brought forward. I have an appointment at the arrhythmia clinic soon. I’ve had an echo and cardiac MRI, and I’ll have the opportunity to discuss the findings then. I have some mitral valve regurgitation and some left atrial enlargement but these are common findings in AF and I’ve learned that these things can cause AF and be made worse by AF so that’s something to watch for.

My ectopics are frequent, often every 5 beats or 7 beats, and it’s all day every day. The beta blockers were suggested as a ‘trial’ to see if they help the ectopics, but they don’t make any difference. In my naivety I thought they might prevent further episodes of AF but I don’t think do and I don’t think they are the appropriate management tool either so I have to wait until my appointment to see what the next step is. I don’t know it further tests will be ordered but the waiting times are very lengthy. It took 5 months for the MRI but from what people are saying the waiting times are awful in some areas so I’d imagine there are people are waiting much longer.

Going from ectopics being my main concern to AF has put me into another place entirely. From being told my heart rhythm irregularities were “benign” and “normal” to something that carries a higher potential risk is taking a lot of getting used to. I’m getting a better idea about life with AF from all the personal stories here. I do think the “lifestyle” advice is oversold. I didn’t get here through poor lifestyle choices. On paper, looking at my NHS health checks and the tests that haematology order regularly everything looks fine, and even my iron levels are reasonably under control though going over the treatment threshold for venesection treatment but not excessively. The BHF helpline nurse told me that arrhythmia has nothing to do with all these markers and that AF can happen to anyone regardless of how perfect their blood work looks.