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Atrial Fibrillation Support

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Problems and af

bobify profile image
45 Replies

Hi I am new to the forum so I would like to say hello to everyone,I have some problems that I don't understand as I am only just getting to know about afib,I started last August with a really bad cough this developed over the weeks into having difficulty in breathing and nearly passing out ,I ended up in A&E where they discovered I was in afib I had already been on bisopralol for some years at the maximum dose so they gave me dixogin and a blood thinner amoxiban I have not been right since I have had very tests and I am awaiting further tests to see what future plans they have for me really my question is has anyone had a bad cough with there AF , I have what feels like palpertations in my chest but my BP and heart rate is well with in levels I have a home ECG monitor which says I am not in AF although I don't know how accurate this is yet I still get the fluttering feeling has anyone else had this and any ideas desperate know as I can't understand what's happening any help would be great many thanks 👍

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bobify
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45 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi bobify

Coughs don't usually have any connection to afib=Atrial Fibrillation =AF for short, nor does the difficulty in breathing though we can sometimes get a little out of breath at times.

AF can come and go and that is called paroxysmal atrial fibrillation =PAF for short. I would guess that may be what you have. Not all medication for this condition suits everyone and there are many different types, so I would suggest you ask if there is something else you could try. Digoxin made me feel like I was losing my mind, but then I have a friend who takes it that says it really helps her.

The fluttering feelings you are getting is just how AF is, though some lucky people are not aware of it.

Feel free to ask any more questions.

Jean

bobify profile image
bobify in reply to jeanjeannie50

Thanks for the reply

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to jeanjeannie50

Hi Jean

How about fluid on lungs or in heart. The cough.

cheri jOY. 74 (NZ)

bobify profile image
bobify in reply to JOY2THEWORLD49

Hi thx for your reply,I am thinking on other things just waiting to get to the hospital for tests to find out

jeanjeannie50 profile image
jeanjeannie50 in reply to JOY2THEWORLD49

Hi Joy

That's sounds like a bit more than a heart rhythm problem.

Jean

Hello bobify, and welcome to the forum. This is likely to sound a bit picky but because there are a number of similar sounding medications used for treating AF, it would help us if used the right names. Sometimes spellcheck can throw in the wrong names which doesn’t help but I’m assuming you are taking Apixaban as an anti-coagulation and Digoxin to supplement the Bisoprolol which you say you have been the maximum dose for several years. Perhaps you could let us know why it was originally prescribed. As Jean has said, bad coughs are not normally associated with AF but we are all different and can react differently to certain conditions. If you have been taking 10 mg of Bisoprolol that is likely to make you feel very drowsy, tired and lethargic and adding Digoxin will generally make matters more difficult but hopefully once the various tests are complete, your medics will come up with a treatment plan designed to help control your symptoms.

I suggest that you check out the AF Association webpages in order that you get a better understanding of what AF is and how it might affect you then ask away, we are a happy and helpful bunch! Hope this helps for starters……

BobD profile image
BobDVolunteer in reply to

Could be Edoxaban FJ.

bobify profile image
bobify in reply to

Thanks for your help

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to

Hi Flapjack

The Heart Specialist and Dr listen to my breathing at each 3 mthly visit.

I thought that they were listening for the heart complication which includes the lungs. Could it be water about in lungs or around heart.

They ask me to cough.

Never smoked in my life. Bronchitis once when I got back from Samoa with a bad cold then tried to save on electricity..... Damp room and it was winter but no AF then.

cheri JOY 74. (NZ)

bobify profile image
bobify in reply to JOY2THEWORLD49

Hi thx for that I do suspect there is something other than the AF,had some tests awaiting further ones see what the outcome is

in reply to JOY2THEWORLD49

impossible to say Joy, the body can be so complex, often with a mind of its own, but you always sound happy!!

Good afternoon bobify and welcome to the forum.

You can find information on AF, the symptoms, and treatments on our website here: heartrhythmalliance.org/afa...

If you would like to speak to one of our Patient Services Team to ask any questions or for any advice or support please feel free to call our helpline on 01789 867502 or email info@afa.org.uk we are more than happy to have a chat and talk things through.

bobify profile image
bobify in reply to

Thanks for that will take that up

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to bobify

Hi

You really need to be assessed by a heart specialist.

Drs didnt want to change medication and Metoprolol definitely made me breathless and very fatigued.

Now controlled with a diagnose of Rapid and Persistent H/R with AF.

The public Heart Specialist changed me to Bisoprolol but I was increased to 10mg without control.

Then I was referred to a private heart specialist by my new Locum.

I was introduced to a CCB Calcium Channel Blocker.

I found that Bisoprolol 2.5mg PM controls my BP mainly

and

Diltiazem 120mg AM controls my H/R from rapid to 60s.

The drop to 60s has stopped the 'what I call now of in exerting myself running

out of energy." Dr explained the blood not getting around the body due to the AF. More oxygen needed through the heart pumping correctly.

So I considered to describe my having to stop in exertion not breathless but

running out of energy.

But definitely happened with Metoprolol and the 24-monitor showed 2 pauses x 2 seconds during the night.

Please think about whether you have breathlessness which could be too much Bisoprolol. Do you have asthma?

Digoxin is a very old med and never talked about by Heart Specialist but it was by my 80s Locum.

An Echo, ECG uptodate to include a new med, 24-hr monitor to show how your meds are working on your heart.

Did 10mg help your BP and Heart Rate? If so why the digoxin.

BBs Beta Blockers which Bisoprolol blocks Adrenaline to enter the heart muscles etc

and

CCBs Calcium Channel Blocker Diltiazem blocks Calcium to enter the heart

muscles but relaxes valves, arteries, muscles etc.

On reflection those diagnosed with AF who are uptight, anxious, worried, depressed find BBs the right med for them

whereas the CCB is a whole lot working for me to get my h/R down.

Both work on the rhymn.

After tests and a visit to Heart Specialist to tell him how you are feeling is most important.

Take care and be patient as, if your H/Specialist is the best, giving you a hearing of how you feel, takes your history, is interested in you and your story to arrive at a better resolution for your AF and quality of life.

cheri jOY 74. (NZ)

bobify profile image
bobify in reply to JOY2THEWORLD49

Hi thx for that I am waiting on the tests hopefully by then I will have more of an idea as to what is going on 😔

CDreamer profile image
CDreamer

Hi and welcome.

Firstly I’m always suspicious of coughs so getting to the bottom of what is causing the cough may help. Is it dry cough or with phlegm? The former could be reaction or asthma whilst with phlegm needs more tests? Which tests are you waiting results on? Normal for cough would be X-ray, sputum test for infection. For AF - ECG, Bloods & Echocardiogram for starters.

Please do look at the AFA website which Admin have given a link to and don’t hesitate to ring them as I have always found them incredibly supportive and helpful.

If you have a dry cough Bisoprolol is not recommended for anyone who suffers from Asthma for instance and you are on a very hefty dose - any chance you have asthma or hay fever or an allergy of any sort?

If you can tell us the monitor you use at home - if a Kardia then I would say that is normally accurate. Cannot comment on any of the others except for iWatch which I’ve found not that accurate for AF.

Finally - have you been referred to an Arrythmia Clinic or Cardiac Arrythmia Specialist? If not I would ask for a referral as really it is best to consult the specialist rather than GP or general cardiologist - specialist Cardiologist is often referred to here as EP or Electrophysiologist.

Hope that helps and don’t hesitate to ask questions - no such thing as silly question.

Best wishes

bobify profile image
bobify in reply to CDreamer

So thankful for your reply will ring and have a good chat

Dippy22 profile image
Dippy22 in reply to CDreamer

Thank you for that info. I had no idea, when I was “referred to cardiology”, that there was a difference between the ayrthmia nurse/team and being properly referred to a cardiologist. I’ve always wondered why I got no further than a nurse who went off to “speak to someone” before prescribing Flec and Digoxin over the phone. I’ve subsequently paid to speak to the cardiologist I was told was assigned to, otherwise I’m not sure I’d ever would have seen him in person.

CDreamer profile image
CDreamer in reply to Dippy22

I always found the Arrythmia Clinic nurses more knowledgeable about arrhythmias than general cardiologist. AF needs a specialist cardiologist = EP Electrophysiologist to whom the specialist nurses report.

Dippy22 profile image
Dippy22 in reply to CDreamer

I just didn’t appreciate being prescribed Flecainide and digoxin over the phone, have none of my questions answered and being told to go home (alone!) and take the meds and “call back anytime in the next twelve months” if I have any concerns. Very poor patient care and treatment, considering they’re both major heart medications. Hence me subsequently paying to speak to cardiologists to get some more info and answers - and appropriate tests!

CDreamer profile image
CDreamer in reply to Dippy22

Unfortunately it’s not that unusual, not that I think it right and I desperately wish we had more doctors who treated AF and spent time explaining and reassuring but we don’t. Neither do I think it lack of care on behalf of the nurses (but there is always one!) but lack of staff and too many patients. Getting to see anyone about anything face to face is really difficult these days so all I have had since moving is telephone or video conferencing except when my pacemaker needs checking which is all done by the Physiologists. My husband was referred to see a Cardiologist for a consult for medication review and the wait is 58 weeks - at least.

On the plus side several suspicious skin lesions were treated within two weeks.

Unfortunately AF is not considered a life threatening condition.

Dippy22 profile image
Dippy22 in reply to CDreamer

Quick update - the nurse called this morning at 9am in response to the message I left….last Friday!! She didn’t seem aware of yet another message from me yesterday which was taken by the admin lady. She said she’d email me, but haven’t received anything yet and now the phone is going straight to answerphone - as usual. I’ve got deep concerns about this Amiodarone they’ve put me on and was in AFib again yesterday and I really needed to speak to someone urgently.

Suffice to say I took myself off to A&E last Friday. Just wondering where DO we get info and support from if it’s not A&E? 🤷‍♀️

CDreamer profile image
CDreamer in reply to Dippy22

AF is not an accident nor an emergency and is treated in out patient clinic - which is where you look for info but frankly I would ring the AFA and talk to them if you are concerned as you are most likely to get accurate information from them - or you can research their website - loads of info here heartrhythmalliance.org/afa...

And/or sign up for Patient Day either online or in person. I learned more in one afternoon doing that than in 7 years trying to get sense out of medics.

CDreamer profile image
CDreamer in reply to Dippy22

PS - you are right to have concerns about Amiodarone - your GP needs to do blood tests before you start to get base line levels and only recommended for short term use - 3 months and it will have affects, some serious but not everyone gets them. Ring and talk to AFA in the meantime here is a link to the AFA Factsheet on Amiodarone api.heartrhythmalliance.org...

Dippy22 profile image
Dippy22 in reply to CDreamer

Sadly my discharge paperwork (when the Amiodarone was started) asks the GP to do blood tests in SIX MONTHS! Thats a joke! I’m not going to allow them to get away with that and I’ll request my bloods to be checked in one month - max.

CDreamer profile image
CDreamer in reply to Dippy22

There should be baseline bloods BEFORE you start and then every 6 months. You can refuse treatments but not demand the but good luck with asking. My husband has been on Amiodarone for 4 years and for him, it has given a quality of life he would not otherwise have. Good luck

bobify profile image
bobify in reply to CDreamer

Hi thx for that 😊 I am awaiting the tests so I can finally see the specialist and hopefully get a few answers fingers crossed 🤞

mesally profile image
mesally

The bisoprolol could be causing the cough

bobify profile image
bobify in reply to mesally

Hi thx for that been on it so long thought of it ,will have to check it with my GP

Fullofheart profile image
Fullofheart

Some helpful responses here (hopefully you find them helpful). It sounds like you need to know more clearly a) what the diagnosis is and b) what the treatment plan is.As others have said I've never heard of cough being linked to AF (I'm not a medic just someone with a long history of AF) but I could not tolerate bisoprolol at all and that made me wheezy and coughy. I had no problem with digoxin though. I find the kardia very accurate but as Jean says if your AF is intermittent (paroxysmal) then it will only show wen you are in AF.

The BHF helpline is very helpful! That's a good place to get info from trained folk which will, hopefully, compliment what you can learn through this forum.

bobify profile image
bobify in reply to Fullofheart

Thx so much all this info has been great I really appreciate it 😄

Rainfern profile image
Rainfern

Hi bobify just wanted to say welcome to the forum. I found it so helpful to learn what was going on with my AF in the early stages. Also to gradually pick up what the various medications are all about and potential treatments. I’m still here six months down the line and still learning! Good luck :-)

bobify profile image
bobify in reply to Rainfern

Thanks and same to you

Ppiman profile image
Ppiman

I think you will find many people have the fluttering feeling, even without AF being present; in fact, I suspect many people perhaps think this is AF since the feelings are similar. If the monitor doesn't show AF, it's likely accurate as all monitors look for a particular electrical signal from the heart which is missing when AF is present; that and an irregular pulse allow the monitors to work.

I've been using a newer type of monitor that runs for up to a day and gives a detailed report using AI analysis from a Chinese company called Wellue. I can recommend it, or, of course, there is the trusty Kardia or Apple Watch.

The fluttering you feel is likely to be "missed" premature ectopic beats occurring regularly. These will be caused by misfiring cells in the top (PACs) or the bottom (PVCs) of the heart and are said to be "benign" meaning they won't hurt the heart long-term. I get them in long runs at times and they cause lots of fluttering feelings; in fact, I have them as I write this. Also, even when they are not happening and my heart is beating normally (i.e. in "NSR"), my chest and heartbeat can feel odd (i.e. I feel "palpitations"). I don't know why that happens, but my doctors aren't worried by it.

I see that you were already taking a high dose of bisoprolol. Was that for another heart issue? Often other issues can cause strange feelings and even increase the chances of AF.

Steve

bobify profile image
bobify in reply to Ppiman

Thanks for your response I am learning so much from these replies need to take it all in I am going to have a chat with the help line 🙂

Ppiman profile image
Ppiman in reply to bobify

In the end, rely on your GP, though. They know so much more about your particular heart. If only they had more time to explain matters better!

Steve

Nightmare2 profile image
Nightmare2

Hi, i am very new here too only a month or so since diagnosis of P. Afib.

I have read up lots of the condition and think now i understand a lot more and via my GP also, I am wondering though why you have been on such a hefty dose of bisoprolol for years. i.e. the condition you have for it, before A.Fib diagnosed.

I have a normally low H.Rate of around 55 ish, and even one 1.25 bisoprolol takes mine down to unacceptable level of just over 40, Dr. says too low, so now its tricky but i have to halve the 1.25 dose, this keeps my h.rate at around the 50 - 55 level.

I did get breathless fora few months, undiagnosed, but now i know that it was associated with A.fib, after taken to Hospital by Ambulance with high h.rate and fluctuating BP last month, which took around 7 hours to stabilise both.

Its a bit of a minefield, as everyone is different i am finding already.

bobify profile image
bobify in reply to Nightmare2

Hi thanks for your reply it is a minefield I need to pick my way through things but all your help as been great 👍

jd2004 profile image
jd2004

Discuss digoxin with cardiologist or GP. It’s not suitable for everyone. I felt really ill when my meds were changed to include it. I ended up back on original meds - Bisoprolol 10 and Flecainide 2x50 and now Apixaban, after what I can now only describe as an after effect of Covid where AFib lasted three months and then went away.

bobify profile image
bobify in reply to jd2004

Hi thx for that,I do need to discuss things further waiting for some more tests then hopefully will have a better idea

jd2004 profile image
jd2004

ps it never goes away/ I’m tempting fate here! It’s managed is what I should have said.

Treschere profile image
Treschere

Welcome to the forum.

You don't say that you are taking it, but Ramipril which is used for high blood pressure lists a cough as one of the side effects.

When you say "a bad cough" that could be relative, I find that sometimes I get a cough when I am in AF, it is usually when my oxygen sats have fallen lower and this causes the reactive coughing with the shortness of breath. If possible, maybe get yourself one of the finger monitors that records oxygen level and pulse.

bobify profile image
bobify in reply to Treschere

Hi thx for your reply,I was on enalapril which they took off me for another tablet my BP seems stable know

HI bobify,

I have always had some sort of flutter since I was in my 20s now in my 70s. I was on a beta blocker to help take the pressure off the mitro valve. However, I never had high blood pressure so they had to watch if my pressure went too low. Despite all that I had a horrible episode of AF and I did have a cough that seemed to go along with it. I read latter it is the body’s response to try and regulate the heart. (If that is true I don’t know). I ended up in emergency and was medicated further to regulate me. Once regulated the cough stopped. Tests that were ran again showed no prolapsed heart valve. I was diagnosed as having a syndrome. I really did think the dr was making that up. So I took myself off the medication very slowly and had only occasional AF for the next 20 years. Then along came Covid and all the stress associated with watching the news on that and having it myself (Jan of 2020)and no one believing me threw me into more frequent episodes. (Testing hadn’t started) I started having more frequent minor bought of AF. BP went up once again and now back on meds which seem to help.

I said all that to say, this is such a confusing condition and nothing makes sense at all.

You are doing well to question and pay attention to the reaction of your body and question what is needed to regulate you.

Stress plays a huge roll.

All the best,

bobify profile image
bobify in reply to Peacefulneedshelp

Hi thx hope you are feeling better know,I need to take everything in as someone said it is a minefield because I am seeing various consultants about things which could be all tide together it's really difficult 😕 however all the replies are really helpful

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