Any thoughts?: Hi, just seen my... - Atrial Fibrillati...

Atrial Fibrillation Support

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Any thoughts?

gentryman profile image
16 Replies

Hi, just seen my Cardiologist`s report from his people that help him.

Before I waffle on, my main worry is that I am asymptomatic with afib.

I see posts about going to A&E after being in AF after so long etc.

Am I supposed to monitor anything, as I don`t have a clue apart from being breathless that I have it?

My pulse now is usually around 80-90 but with the odd 105 at rest.

I know I`m lucky in one way in that I don`t feel anything but after doing ok on Zemtard ( diltiazem), my Cardio says maybe going onto flecainide in the future.

But he mentions a concern with flecainide in that I may not notice anything due to being asymptomatic

Like I say my main worry is when to worry!.

thanks for any help.

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gentryman
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16 Replies

Hi gentryman,

I was diagnosed with paroxysmal AF on 6 January 2010 and with that diagnosis came the fact that mostly I would be asymptomatic. How do I deal with it ...just get on living the dream ! and don't worry. Worry won't cure your AF nor stop you being asymptomatic, not in the least.

Based on my own experience, leading up to my original diagnosis, during AF and now I have it well controlled I believe you need to monitor your blood pressure, your HR and get ECG's. To this end I recommend (purely as a sufferer) a blood pressure monitor and a Kardia. Both will give you hardcore evidence that you can present to your Cardio person.

My view is depending on your age and body mass you should aim to get your HR down to around 70 bpm and your BP down to around 125/70 to 130/70. Anecdotally these seem to be optimum levels which will take pressure off your heart and cardiac system. Thats just a start point. The HR figures you quote would seem to be too high. It is said that a HR of 60 to 100 is OK ..... my view is thats rubbish as it makes no reference to the corresponding level of BP. A HR of 95 and a BP of 140/85 would not make any sense and your heart would be working bloody hard, if you are at rest. Especially if you are say 65 to 70 years of age.

I am wondering if you are asymptomatic all the time or occasionally (24/7). Do you feel anything at all, maybe even something like going down with flu ? Maybe even digestive issues, bloating, diahorrea ? Anything that may give a clue.

Hope this thinking may help you with another take on the problem.

John

mjames1 profile image
mjames1

Not everyone goes to the A&E when in afib. It depends on your health history, how symptomatic you are and whether or not they give you something to treat it at home. What does your doctor say?

Once flecainide is brought up, probably a good time see an ep for a second opinion. EP's are cardiologists with additional training in arrhythmia's. They are best equipped to explain your options, be it medications like flecainide or a surgical option like an ablation.

Since you're somewhat asymptomatic, you might want to ask for a zio patch or similar to document the frequency and duration of your arrhythmia's. If not available, or for monitoring after, you could invest like many of us have in a Kardia home device. The information generated can be very helpful in putting together a treatment plan.

Jim

CDreamer profile image
CDreamer

Hi gentryman - you ask a very pertinent question - when to worry and/or if to worry?

I am very much of John’s view - if you are not symptomatic then why worry at all, the caveat being that you are on anticoagulants as prophalactic against stroke, which I believe you already posted that you are.

After my first few very first episodes when I was trying to get a diagnosis or the odd occasion when I had very fast HR and very low BP so was unable to stay conscious unless lying down ie: very symptomatic - I did not go to A&E simply because AF is not considered an emergency so the rules I was given by my GP was - any chest pain, feeling ill with AF, syncope (passing out), if HR is sustained at 150+ for more than a few hours.

If you are an cardiology outpatient they will rarely treat unless you are in extreme distress or considered life threatening - and let’s face it - who wants to sit in A&E in these times?

What I do think important is to have regular checks which mostly your GP can do - regular blood tests, BP tracking, echocardiogram every year if something needs monitoring, maybe less often if your heart structure is good and to keep yourself generally well - good sleep, nutritious food, moderate exercise and biggest of all - manage stress and don’t worry.

The only thing I would question - why Flecainide and why now? and I would drill down deep for the reasoning - this is not a drug to be considered lightly and I agree with mrjames1 - needs an Electrophysiologists’ input and in my view careful ECG monitoring. I had to start Flec whilst under medical supervision and although it stopped and prevented AF for a while, eventually AF broke through. The risks of taking any drug should always be balanced against the benefits and although Flec works well for some people, there are risks in taking it which should be carefully explained to you alongside the benefits.

I think it would also be good to explore other treatment options, if you are set on getting rid of your AF and are not prepared to live with it. There is a view that treatment for AF is for quality of life so if you are not symptomatic then you will often not be given priority.

All said with 17 years of coping with AF which was eventually conquered through pacemaker but only after drugs and 2 ablations.

Best wishes

gentryman profile image
gentryman in reply toCDreamer

Hi CD dreamer, thanks for the reply.Regarding the Flecainide, it was mentioned by the Cardio after I said my home BP readings seemed higher to me.

My doctor then put me on Ramipril and then tried Losarten, which both made me breathless. I'd felt fine on Zemtard until the new BP meds, so the cardio then mentioned flec.

My Dr should have received the cardio report by now so I will make an appointment with him.

And yes, my Wife had to go to A&E during Xmas, 10 hours we were there.

Thanks again.

CDreamer profile image
CDreamer in reply togentryman

Flecainide is an anti arrythmia drug so not clear about the connection with your higher BP readings, which could be a concern and will need to be controlled.

The recent early results from the Zoe Hypertension study showed that eating foods high in potassium + moderate exert can often be more efficacious in lowering BP than reducing sodium intake or some medications. Worth looking at?

gentryman profile image
gentryman in reply toCDreamer

Thanks, I will look it up.👍

Rainfern profile image
Rainfern

Hi gentryman, in agreement with the others here on regular home monitoring for HR, BP and AF. My device takes an average of 3 consecutive readings which makes it a lot more accurate and it also registers AFib. Recommended by a nurse at British Heart Foundation. Like Carneuny I agree it's important to keep relaxed and get on with life, so I make sure to do plenty breathing and relaxation exercises while same time facing the reality of living with AFib. The "Balance" app is very good, straightforward and free for a year with no ads.

Like you my symptoms are slight compared with many here, and I'm waiting for further tests. I was diagnosed Paroxysmal but seem to have settled into something a bit persistent, similar resting HR to yourself so await further comments here with interest.

Jo

gentryman profile image
gentryman in reply toRainfern

Thanks Rainfern.Which BP model is it please?.

My current one seems to throw in a really high or low reading occasionally when I do 3 separate checks, so I'm not convinced in it's reliability.

Rainfern profile image
Rainfern

I have the microlife HomeA model. I bought it as a way of reducing worry rather than causing more and I haven't regretted it! Good luck finding the treatment that can best help.

secondtry profile image
secondtry

I am a bit biased as Flec (200mgs medium dose) has worked well for me for 9 years now; no breathing/energy issues. I suspect your cardio wants to stop those occasional HRs to 105. If that is achieved, being asymptomatic and assuming any other drugs don't impact energy/QOL you could probably consider yourself fortunate.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I dont feel my rapid persistent Heart Rate so I've nrever been offered Flec.

Like you I was on diltiazem 120mg from 180mg - too much.

In NZ Diltiazem by ACCORD is not a MEDSAFE drug.

A year been on it controlled but 23 December I was alerted to check BP and H/R. Morning 67! Whereas I was usually 90s in am.

I've changed back to Bisoprolol but it needs twinking. I'm in the midst of that because I'm not liking my BP.

I understood that flec is used as a PIP pill in pocket and if I am persistent and don't feel it what use is a PIP.

Diltiazem taken in the morning controlled my heart rate day and left 47 at night average.

I'm going toask if I could change a CCB acting in a lower dose. But others work in 5mg and 2.5mg etc.

I wonder why he wants to take you off D. because its controlling your heart rate ideally under 100.

cheers JOY. 73. (NZ)

oscarfox49 profile image
oscarfox49

I am told that I have permanent AF by both the cardiologist and my local doctor. I used to argue about this as there are long periods when I experience no symptoms though my BP monitor that does claim to register arrhythmia always shows the symbol for this.

But like you, the worst I feel is breathlessness on exertion and for the moment I can do most things in life that a 76 year old would expect to do, including brisk walks, climbing small hills and working in the garden.

I don't quite understand the basis for your concern, as if your medication is controlling your condition and you are mainly asymptomatic, the important thing is to maintain a healthy life style with a good diet and plenty of exercise. This will do more for your condition than anything else. Excessive monitoring is more likely to raise your stress and anxiety levels (I know as I used to do this all the time).

As others have said, many things are completely out of our control and it is a waste of time to worry about them, but if you concentrate on healthy life style and prudent medical consultation, that is all any of us can do.

Ppiman profile image
Ppiman

It is said that we won't die from AF, but that it can make us feel as if we might! Why people go to A&E, I do not know, but I imagine it to be either because of the physical and mental toll from suffering a very fast heart rate brought on by an unremitting AF (and the reduced heart output that results) or the pure fear of dying or having a heart attack. In your case, as with my elderly friend, he gets neither and remains healthy despite having no treatment apart from an anticoagulant.

I'm not sure what the comment regarding flecainide means. Perhaps you've been given it as a "pill in the pocket" to take once AF starts but might not notice it having started? However, as these drugs are mostly used for symptom relief, I'm not sure why you have been given it if you are pretty much symptomless.

A call to your GP might be needed to clarify things.

Steve

Sniggetts profile image
Sniggetts in reply toPpiman

Hi Ppiman , it is interesting that you wonder why folks attend A&E for AF. Having found myself in resus , then subsequently CCU having waited my turn quietly in the A&E waiting room to be triaged , the consultant was very concerned that I hadn’t called an ambulance & had made my own way in. My HR was 280 + ( I hadn’t realised) . He said that in fast AF your body may well suddenly not be able to cope & you could be very seriously compromised. I wasn’t collapsing but was clammy & had very shaky legs hence thought I should be checked out.

So I would encourage people to attend A&E if they really do feel that their AF is feeling out of control or you feel odd / not right.

I’m awaiting CT then hoping flec as my AF is paroxysmal and feels horrible. I look forward to some AF free days. I’m awaiting a Kardia so I can record numerous AF daily at a HR of anything from 45-120. Admittedly I’m only 4 months into this new diagnosis & I just want to get rid of it so I can function as before.

Ppiman profile image
Ppiman in reply toSniggetts

That must have been truly frightening for you. I suspect most people with AF don't suffer as you did as a heart rate of 280bpm sounds unusually high. When I had atrial flutter my rate was 155bpm and I felt terrible. From what I understand, I think many people during an AF episode have a resting rate of 100-140bpm, with some up to 170bpm and others with a normal rate. The trouble is (as I found) that the extreme anxiety it can cause pushes the heart rate up also.

I hope your doctors sort you out soon.

Steve

Skymist profile image
Skymist

I have Paroxysmal AF and have found it easy to control with Metoprolol Tartrate. I take 12.5mg when I feel palpitations, or observe a high heart rate on my FitBit watch, which constantly monitors my heart rate. During the next hour, my heartrate then declines to a comfortable level. I have the Sense 2 model. Because my needs vary so wildly during the day, being able to respond with an "as needed" medication has been an excellent solution. I recommend the health-monitor watch. Apple makes some good ones too. There are some low cost watches made in China, but their accuracy and sensitivity is possibly poor and I think you should avoid them.

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