Newly diagnosed with AF

[Nieta]

Hello, I am a 45 year old female who has been recently diagnosed with Paroxysmal AF, I have been commenced on a Warfarin and Bisoprolol (50mg). I have recently noticed I become shortness of breath when my heart goes into AF which is still daily and wondered whether this is normal.

[Hidden]

Hello Nieta,

Welcome to the forum.....Sunday is often quiet, so I just wanted to let you know you are not alone! The short answer is often yes....but AF affects people in so many different ways, no two people have the same symptoms and some dont have any symptoms at all, but shortness of breath is very common. You have found a good place in this forum....there are many here who can help you to understand the condition, but the important thing is that you are taking anti-coagulants (warfarin). I assume you were diagnosed by your GP so I hope you are being referred to a specialist so that your condition can be properly assessed.....over a million people have AF and many more may have it, but do not know, but the important thing is that you are able to find out more by checking out all the information available on the AFA webpage. Doubtless that will generate more questions which you can raise here, but please press your GP to refer you to a cardiologist or preferably, an electrophysiologist (an EP who specialised in arrythmia). Hope this helps ......John

[Nieta in reply to Hidden]

Hello and thank you for your reply, I was initially diagnosed by a cardiologist who had looked at an ECG sent via my G.P. but I then ended up in A & E due to the symptoms I was experiencing. I am on Warfarin and I am having an echo undertaken next week. The cardiologist I seen would prefer me not to be on any anticoagulants as I only score 1 on a risk score which he says a person should be 2 and over before prescribing anticoagulants but I don't know how I would feel about not having them due to the risk of a stroke. But I will write down the questions I need to be answered.

[Hidden in reply to Nieta]

See Nieta....I wasn't wrong about you getting lots of good advice.....was I ??

A couple of things for you to remember. AF is not a nice thing to have (you already know that) but in itself, it is unlikely to kill you, but for some, it can impact on quality of life. Fortunately, for many it doesn't and they continue to live a relatively normal life. The risk of stroke is very real though, and it's good that you know that and that your score is low at 1. Provided your risk of an internal bleed is also low, then you need to think very carefully about coming off anticoagulants. Millions of people take Warfarin and many have little or no problems but as others have said, there are alternatives which provide more freedom and they are known as NOACS (although they have just modified this to something else which I can't remember!!). I take Apixaban, but there are 3, maybe 4 others and they have real advantages as you will see from the comments here.

One other thing to bear in mind is that folk like you with paroxysmal AF are more like to respond to treatments such as ablation (a procedure well worth checking out online) and it is generally, the sooner this is done, the more successful it is likely to be. Lot's of research is recommended though, because there is an element of (low) risk, but it is an invasive procedure which involves catheters normally passing through your groin up to your heart and either burning or freezing tissue in the heart that is responsible for the arrythmia. Many will tell you, AF is likely to get worse over time and medication will probably go a long way to controlling it, but for younger people (like you) it is well worth considering.

These procedures are carried out by Electrophysiologists who, as you now know are the Consultants who specialise in arrythmias, and they are also the best specialists to see if you decide to pursue medication treatment instead. The fact you are having an echo is good news as this will help the medics determine how best to treat you. I know I have repeated many of the things others have said, but one of the benefits of this forum is that most of us have been where you are now and understand how worrying and confusing it can all be, but from what you have said, you are on the the right track, but always bear in mind, we are all different and AF affects us all differently, so keep jotting down those questions as they pop up so that you get the advice that best suits your condition.

Last, but not least, check the AFA webpage to see if there are any AF support groups near by - I go to one in Epsom, Surrey and the help you get is immeasurable.....sorry if I have gone on a bit, but I hope it all helps....best wishes, John

[Nieta in reply to Hidden]

Thanks John I appreciate the advice.

[Hidden]

Hi Nieta, it can be a symptom. It is one that I found got worse as I became more aware of it. I can become more of a sympton of anxiety rather than AF. Keep calm, control your breathing and it will soon pass.

[Nieta in reply to Hidden]

Thank you for your advice I will try that next time it happens.

[BobD Volunteer]

Hi Nieta and welcome to the club you didn't want to join. I'm current;y rushing about preparing for a two day trip so will be brief.

My instinct is that your breathlessness is due to the bisoprolol. and I'm sure that you mean 5mg not 50 mg ! This just slows your heart rate when you are in AF but the rest of the time it turns you into an energy lacking zombie. Many people find this but sadly bisoprolol is the fall back drug for general doctors. If your situation doesn't improve then you need to ask to be referred to a specialist and not just a cardiologist. Electrophysiologists are those people and they are cardiologists with a special training in heart rhythm problems.

Do go to AF Association main website and read all you can about AF as knowledge is power.

Ask any question and we will try to help. Where are you by the way?

[Nieta in reply to BobD]

Thank you for you reply and yes it's 5 and not 50 mg, it was a typo. I can see that a lot of people have mentioned an electrophysiologist, which I had never heard of but which I will now read up on, on the website you have mentioned.

[PeterWh]

Hi Nieta

Welcome!!!

I notice that you said that you have a shortness of breath when in AF. That's very telling.

I am in persistent AF (ie 24/7) and I was told by my heart valve consultant in September that typically I might have lost 30% to 50% of my circulation. Very fortunately by fluke of nature I have a lot of my 6' 0" of height in my body and my lungs are about 30% to 50% bigger which helps although I still do get breathless at times especially when it's cold.

You could be having the same circulation effect when you are in AF but of course this loss is minimal or non existent when you are in NSR.

So I expect it is both the AF itself and also the bisoprolol that are contributing

Yes you must see an EP.

[Nieta in reply to PeterWh]

Thank you for your reply I can see that a lot of people have mentioned an electrophysiologist, which I had never heard of but which I will now read up on and speak to my cardiologist about.

[PeterWh in reply to Nieta]

Just be aware that some cardiologists are sceptical or dismissive of EPs since EPs are the new kids on the block so to speak and are viewed as encroaching on the cardiologist's patch!!!

[Jusiskin]

Ian experiencing the same symptoms on Xarelto and 10mg Bisoprolol. I have also been given a statin and 10mg of Amlodipine daily I positively rattle with meds. Am due for catheter ablation on December 12. Apart from the shortness of breath I also experience bad pain in my upper legs. Am cautiously optimistic that the ablation will take care of the AF.

[Nieta in reply to Jusiskin]

Thank you for your reply and good luck with the catheter ablation in December.

[Jusiskin in reply to Jusiskin]

Thanks very much Nieta. Sorry I can't be more useful in terms of practical advice. will keep in touch and let you know how I get on.

Atb from Judith

[Hidden]

I was diagnosed last year when I was 47.

Horrible and confusing really. Read all you can on here, in little time you will know more than your GP about AF (not difficult tbh)

When I started down this road I was on 12.5 mg of Bisoprolol a day and was so breathless I could barely walk up a flight of stairs.

Bisoprolol is well known for this side effect, but also when you are in AF that can make you feel breathless too.

I would also be asking about an alternative to warfarin, the new anticoagulants don't require blood tests and aren't affected by diet much less invasive on your daily life.

Push to see an EP too.

[Nieta in reply to Hidden]

Thank you for your reply and yes I am on Warfarin but the cardiologist I seen would prefer me not to be on any anticoagulants as I only score 1 on a risk score which he says a person should be 2 and over before prescribing anticoagulants but I don't know how I would feel about not having them due to the risk of a stroke.

[Hidden in reply to Nieta]

Which is why you need to see an EP. I score a 1 and I don't have many episodes, but I'm not taking the risk.

Really push to see an EP, it is your right as laid down by NICE guidelines.

[Nieta in reply to Hidden]

Thanks for this advice I will read up on the NICE guidelines prior to seeing my cardiologist.

[Slinkydog98]

Hi, Nieta, welcome, it's scary isnt it? , I have paroxoysmal AF to,( for 3yrs next March) and have only had 3 bad attacks, no shortness of breath but VERY fast heart rate. I took bisoprolol for only 4 weeks, as to be honest it zapped me ( and was only 1.25 dose) I just could not function at all!! told cardiologist and he told me to stop it and gave me metoprolol as a pill in pocket ( meaning take as and when needed) which has only been twice. I have been very lucky with warfarin as has kept me in a safe 2-3 all this time so I only need testing around 10 weekly, hope helps, good heath for future. Lynn

[Nieta in reply to Slinkydog98]

Thank you for your reply I feel that being newly diagnosed I have a lot of questions for my cardiologist.

[Timmo50]

Hi Nieta, I was diagnosed at the same age as you and am now 54, lots of things have been said and you will get good honest advice on here, but please listen to the doctors especially the EP if you get to see one (which you must!!!).

My main advice is to stay positive and dont let the PAF become who you are. You might have to look at your career (I have had to give up 12 hour shifts) but so what, you might cut back on socialising but again so what. You can still lead a full and enriching life with this condition and the body blow that this diagnosis is at the moment, is not really that bad.

On to your question about Bisoprolol, I took it for eight years and never felt breathless (tired at times yes). If you are in AF when you have this breathlessness then I would say it is more likely to be the cause. I too have stopped Bisoprolol and gone onto Metoprolol as a pill in the pocket and that is the beauty of this forum as you can approach your doctor with informed suggestions.

Good luck JOHN

[Nieta in reply to Timmo50]

Thank you for your reply, I am a positive person so I guess that will help me, as for changing my career I am lucky enough not to be doing 12 hour shifts but do have a stressful job I am unable to change. I will speak to the cardiologist about a change in my medication and for a referral to an electrophysiologist.

[Finvola]

Hello Nieta and welcome.

I would think that 3 things are contributing to your breathlessness - AF itself, Bisoprolol and shallow breathing because you are stressed.

AF episodes for me always resulted in shortness of breath which was so bad that I could either breathe or talk but not both at the same time. Once I started on Bisoprolol 2.5mg the breathlessness got worse. I have my AF controlled by drugs now but get bouts of ectopics and breathlessness and I have found the deep, slow breathing technique which Bob describes very effective in calming my heart and stress, as well as getting rid of the ectopics.

Do discuss things with your doctor as there may be alternative ways forward for you. Best wishes

[Nieta in reply to Finvola]

Thank you for your advice I will try the breathing techniques next time it happens.

[constabule]

I thought Id add my welcome - I am sure you will find the forum very helpful. Between being diagnosed and my first cardio version (which went very well) I was on 5mg bisoprolol and even moderate exercise made feel breathless. They then they start lining you up for tests - gets you down a bit, but logging into the forum every day and reading and asking was a massive help.

All the best for the future - it will be a bumpy ride but hold on tight and you will see it though - good luck

[Nieta in reply to constabule]

Thank you for you reply I have found this web site and good source of information and support. I am trying to keep up my exercise regime and healthy eating as I don't want to gain weight which I feel would make it worse.

[dizzielizzie1]

Hi Nieta, I was diagnosed with PAF 3 years ago. I have an irregular heart rhythm , but my heart doesn't go fast. I was initially on Bisoprolol 2.5mg but it made me very breathless. I only have an episode of AF about once a month, so I now have Sotalol as a pill in the pocket. Because I am now 65 and female with PAF, I am now on Rivaroxaban ( just started it today. Fingers crossed I get on well with it. Only time will tell.) Last week I was put on Rampril for high blood pressure, which wasn't too high to begin with, but surprisingly that has helped my heart a lot . I walked up the steep high street in town this morning much more easily. Last Saturday I consulted a qualified medical herbalist who says she can treat me to help prevent AF episodes and is going to write to my GP to say what she is doing and she will work round my prescribed meds. Again only time will tell. Keep reading the Forum as you will learn a lot from other people's experiences. I wish you well.

dizzielizzie1

[Nieta in reply to dizzielizzie1]

Thank you for you reply I have found this web site and good source of information and support. Please keep me updated on how you go with the herbalist as I would love to cut down on any medication prescribed.

[dizzielizzie1 in reply to Nieta]

Nieta, I am not a medical professional, but I did receive a reply to an earlier post from a cardiologist. He said that if your Chad2 D2 ( think that's correct?) was 0 or 1 your chance of having a stroke was very low and you are only 45. I think he said the risks of anti-coagulation outweighed the benefits with a score of 0 or1. You need to discuss this again with your GP or cardiologist if you are worried. Being a low risk and being young, perhaps you could go down the herbal route as there are several things which definitely act as anti-coagulants. But please consult someone who is properly trained and registered as a medical herbalist.

[Nieta in reply to dizzielizzie1]

Thank you for your reply and the advice given.

[di-london in reply to dizzielizzie1]

hi Dizzie, could you share with us what type of preventive steps is the medical herbalist proposing to prevent AF? I only ask because my father who is 75 has AF episodes every 7-10 days and as you can imagine they are a real nuisance and disruptive to his life. I look forward to your response.

hi Neeta- i can imagine how you feel but hang in there and it will all be ok. an EP is a great advice, I speak from my father's experience, since he saw an EP his treatment and review of AF had a massive change.

[dizzielizzie1 in reply to di-london]

Hi Di, my herbalist is concentrating on my A fib and my digestive problems. She said she could help stop the P Afib episodes and give me herbal remedies which would act as an anti-coagulant. I was about to start on Rivaroxaban and wasn't sure about relying on herbal meds to keep me safe , so i said that I would take the Riva/ban for the time being. Yesterday, I felt a funny sensation in my chest, and took my pulse and it was skipping beats every 5 -10 seconds BUT it only lasted about 10 mins and then was gone. Ordinarily my PAF will last from 2-9 hours. Now I don't know if that was down to the herbal meds or the fact that I also started on Rampiril for high blood pressure, at about the same time as the Riv/ban. The herbalist gave me a very large bottle of liquid meds to take three times a day and I am sorry but I have no idea what is in it. I do know that she is working in harmony with my prescription meds and wanted to know about everything I was taking. I will be seeing her in a month's time again. What I would say is that if your father wants to try some herbal meds, please go to a properly trained and registered medical herbalist. Sorry, that is the best I can say, as I haven't been taking the herbal meds long enough to be able to evaluate them properly. I'm sorry that your father has so many episodes of A Fib, they are horrible.

[Francis23]

Why are you on 50mg of bisoprolol,this is a very high dose for someone so young? I am on 5mg which I requesting to lower to 2.5mg.Also ask to changed from warfarin(rat poison) and go on apixiban blood thinners.

Best wishes

francis23

[Nieta in reply to Francis23]

Sorry it was a typo it was meant to say 5 and yes I am on Warfarin but the cardiologist I seen would prefer me not to be on any anticoagulants as I only score 1 on a risk score which he says a person should be 2 and over before prescribing anticoagulants but I don't know how I would feel about not having them due to the risk of a stroke.

[Vony]

Hi Nieta. I sometimes get very breathless when in fast AF or atrial tachycardia. My EP said that I get short of breath because my heart is going inappropriately fast for periods. Write down all your questions to ask the medical and nursing staff. This forum is a great source of support too. xx

[Nieta in reply to Vony]

Thank you for you reply I have found this web site and good source of information and support.