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AF Association
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Newly diagnosed persistent AFib

Uurrghh - this condition is so debilitating. I ended up in A&E a few weeks ago with a racing uneven pulse, dizziness and breathlessness. After having an ECG, chest x-ray and blood tests, etc., I was diagnosed with AFib (I’d never even heard of it before then). I was put on a drip and had to wait until my heart rate came down before discharge with leaflets, medications and an appointment for an echocardiogram (next week).

Is it normal for the meds not to control the irregular heartbeat?

I have been in persistent AF since that day (my GP upped the dosage of Biosoprol from 2.5mg to 3.75mg) and i’m also taking an anti coagulant.

I feel peculiar most of the time being aware of my heart flip flopping about and walking up stairs or even a very slight incline is frightening causing pounding heart and breathlessness; even talking leaves me short of breath. I’m so tired all the time and wondering if things will ever improve? I’m desperate to get my energy back.

I must add that this condition was brought on by extreme stress (husband very ill) although the NHS description doesn’t mention stress as a trigger but for me it’s too much of a coincidence for stress not to be the cause.

Bytheway I’m a 58 year old woman, was in reasonable physical shape, non-smoker, occasional drinker (no binges) and no hypertension.

Does anyone else feel that their AFib was caused by stress and is anyone else in persistent Afib with meds not helping? Is there anything else I can do to get my heart back to it’s normal rhythm?

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Hello! Af is a horrible condition,which can affect people in lots of different ways.Its ear!y days yet,the resu!ts of the echocardiagram will help inform your medical team to help you.They want to ensure for one thing that your heartstructure is ok ,as one of the most effective drugs Flecanaide,should not be given if there are valve problems,for example.

There is a proceedure called ablation which has a success rate generally of 70% ,which may be appropriate in your case.

Lots of people on here find deep slow breathing,meditation,relaxing dvds or on phone music

I certainly agree with the stress levels causing or worsening af symptoms! Anxiety breeds more af for me...viscious circle which has to be broken!

Sending best wishes to you.xxx

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Thank you so much for your response and explaining about the echocardiogram, hopefully they will find nothing wrong apart from the heart rhythm being out of sync. and I can go ahead and try the cardioversion to set things right again. My first grandchild has just arrived and I desperately want to be fit and well to enjoy her.

Kind Regards

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The cardioversion they can do whether you have heart structural problems or not, as long as you have been on anticoagulants a month or have a transosephegal electrocardiogram beforehand to check for clots. However it's unlikely to work for long.

Bisoprolol is a beta blocker rate control drug so will not put you back in sinus. For that you need an antiarrhthmic like flecanide as wilsond says.

The ablation option is definitely worth pursuing as successful ones work better than drugs and you may be able to stop taking them apart from the anticoagulant. It's important to actively pursue this option or get antiarryhmic drugs since the longer you have af the less likely these treatments will put you back in sinus. Some people are asymptomatic in af and rate control drugs only are appropriate. But that's clearly not the case for you 🙂

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Another trick is to try taking the bisoprolol last thing at night if you aren't already. That helps some people with the tiredness

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thank you for that information- i’m learning all the time; i will try taking the meds at night instead, you’re definitely correct as i’ve noticed i’m feeling less tired as the day goes on. I also didn’t realise that the bisoprolol would not help the heart go back to normal rhythm- wow. I think i will try and find a specialist and pay privately- thanks again

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They always use high dose bisoprolol on me in a and e and puts me back in sinus.

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yeah that’s what they did with me but unfortunately it didn’t go back, but heart rate came down ok

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Once you have had 4 weeks anticoagulation without missing a dose, you would be a candidate for electrical cardioversion. In the meantime you may need a larger dose of a beta blocker, with a possible switch to Nebivolol which seems better tolerated at higher doses.

Consider a private appointment with an EP electrophysiogist roughly £200, to get round the long wait time on the NHS.. You can revert to NHS for further tests.

Medication to prevent or shorten further episodes of AF once you are back in sinus rhythm can only be initiated by a consultant.

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Thank you for your reply Oyster - I will definitely take your advice re seeking an appointment with an EP if things drag on. I also agree that the GP may need to increase the dosage as there has been no improvement in the irregularity of my heartbeat, not even 5 minutes a day. I worry that it’ll kind of get well and truly stuck in that abnormal rhythm. I actually forgot to take the Rivaroxaban yesterday and was much less tired but obviously that’s preferable to a stroke so i’ll keep on with them.

Kind Regards

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The longer you stay in AF, the less the chance the cardioversion will hold. Has DCCV been discussed?

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Ive done just that yesterday,clinic appointmentn to see my EP...may 31st...private..19th December,same guy......it is worth it if you face a long wait...xx

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I have been taking rivaroxaban for a while and don't have any tiredness side effects or remember reading about them. It's much more likely the bisoprolol. You may be able to switch to a calcium channel blocker like Verapamil or Diltiazem. But please ask your medical professional, I'm just an af sufferer who has had to become very familiar with this stuff 🙂

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ok thanks, will do

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I think stress can be a trigger. It certainly set me off once (I was doing a phone interview for a new job). So good to reduce if you possibly can though I know that will be difficult in your situation

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From my experience DCCV, most emergency centres will do it if you have been in afib for less than 48 hrs (ideally 24) even if not on anticoagulants.

Once over 48 hrs they want the anticoagulants for some weeks BUT some EP's will still do DCCV without having been on anticoagulants if there is no structural concerns with your heart on echo.

I even know some EP's that do not prescribe anticoagulants despite Afib if there is no structural concerns.

I would definitely talk to an EP about having an ablation as soon as possible, not just a GP. Arrange for a private EP as soon as you can.

There seems to be mounting evidence that the earlier you do ablation the better chance of success long term.

I think for people having a 6-12hr afib episode 1-2 x yearly I would do nothing.

But if potentially in persistent or permanent afib I would think ablation asap.

Or if, like me, they were occurring more than monthly (every 5-7 days by the time I had my ablation).

Most EP's have told me drugs rarely work when in AFIB, but may help prevent them once out of afib, but generally are over rated. (Ive seen 5 EP's before I decided what to do. many different opinions but some similar themes along the way!)

So I would recommend

- Don't book an EP if things drag on, book it asap, go private for time saving. Get the best info as soon as possible so if things do drag on you have tightened up your waiting times.

- Definitely DCCV as soon as they are happy to, as it's a really easy simple in/out process and you will feel greeeeat once back in nsr.

- Go with whatever drugs they say once you either naturally convert back to NSR or DCCV back to normal.

- Once normal still see your EP for recommendations.

- If you revert back to AF, and if it lasts longer than 24 hrs, DCCV again via emergency, and book an ablation (If your EP agrees which I'm pretty sure they will.)

I think going early will give a much better chance of long term cure.

Good luck and feel free to ask any questions you want.

marcus

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thanks, i’m finding this forum an invaluable source of good advice; will look into finding an EP, i’m in south staffs - are there any recommendations of how to find one?

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This is what I would recommend:

- Ask this forum: I live in...who can recommend an excellent EP (Im in Aus so cant help!)

- Then your GP: get a consult with you GP and simply say: I would like a referral to the best EP you can recommend asap please

- Then google: electrophysiologists in your area and research a few. Potentially ask your GP; Can I have a referral to this guy, unless you recommend someone better??

easy peasy!

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I will definitely do this

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Hi afibbyfabby. I am in same position as you. Nothing has been done for me yet though. My own Dr. Put me on an extra Bisoprolol tablet and an anticoagulant(Eliquis). Breathless going upstairs and moving too quickly. Weakness in arms is bad as well. Following your post as would like to know where you go from here. Good luck to you.

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Cheers, it’s nice to not be alone on this ‘journey’ - i’m learning all the time about it. The exhausted breathless feeling on any exertion is unbelievable- literally will do anything to get back to normality

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Bisoprololol is often associated with breathlessness. If you type it in the search box (top right on the header line) you will find out a lot more about it's side affects and the alternatives that are available.

I have had permanent Afib for many years now and have had to adopt a virtuous life style - chuck the booze, weight inside my BMI, waist half my height, lose the fast food and take rampiril to keep my blood pressure within limits.

I can and do take exercise, not extreme stuff, but 5-6 miles around the local paths 3-4 times a week. Some people say that as the heart is muscle and you either use it or lose it. A lot of people have great faith in pills and hope that one will cure everything - if only this was possible.

There are lots of comments on this site - I hope you find them useful. A combination of lifestyle, medication and surgical interventions in the form of an ablation will probably see you well again, and probably a lot fitter?

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I agree, i think a multi-pronged attack is best lol

Love my gin and tonics but definitely cutting right back and trying to eat healthier but the exercise is difficult. Used to enjoy walking and exercise classes but don’t feel able to participate any more. Maybe swimming would be a good alternative?

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I think we all have different symptoms when in AF, but i was in persistent AF (flip flopping heart) for 6 months prior to my first cardioversion.

I was able to get on with things fairly normally although i was careful if i ran up the stairs, for example, i would have to take a minute to compose myself.

My DC cardioversion was successful and kept me in NSR on that first occasion for 2 years

I was on bisoprolol which only lowered the heart rate, rather than controlling the rhythm

I think stress is definitely one of the many contributing factors to the onset of AF

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wow, you could run up the stairs? You said your cardioversion was successful for 2 years; does that mean you had to have more treatment afterwards? Definitely agree with stress as a trigger

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I had one further successful chemical cardioversion with flecainide, which kept me in NSR for 4 months.

I was then put on a waiting list for an ablation. I was in AF then for 12 months until my ablation

I've been in NSR since Feb 2018 and have all fingers and toes crossed

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glad to hear it, fingers crossed for you

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Yes, how AFIB effects someone can be vastly different from person to person. I actually run/jog (up to 5K) when I am in AFIB to get me out of it and have had almost a 100% success rate converting back (usually within 1K) regardless of how long I've been in AFIB (though I've never been inAFIB for more than 10 hours.

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I used to run years ago, can’t even walk up a slope without practically passing out now lol

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I am very sorry to hear about your problems.

Yes , probably stress for me as nothing else seems to cause afib or trigger it. However i suspect it was the cumulative effect of years of stress not just one event . Never could I prove that. The best I got from a medic when I asked was " well it won't have helped".

Back to you, you are having the echocardiogram so the doctors can check that there is nothing physically wrong with your heart which would cause the AFib.

Drugs: Bisoprolol is a rate control drug, it does not stop A fib, it prevents your heart rate from going too high.

There are other categories of drugs which are antiarrhythmic and are used to control the rhythm of your heart. I believe these are only prescribed by electrophysiologists (EPs), or cardiologists. I was on one called Flecainide. This has to be monitored when initially prescribed owing to possible problems with the liver and heart.

I would expect that you will be given an appointment with a consultant cardiologist or EP soon. If you do not then go to your GP and request a referral.

Did anyone at the hospital discuss cardioversion? This is a procedure which gets you back into normal sinus rhythm. (NSR). Normally it is electrical shock, it can be by other methods. I myself was cardioverted by intravenous flecainide infusion on one occasion after being in high rate A Fib for 8 days (130-195bpm resting). 12 other times my heart resolved itself. I understand that If you had afib for over 48 hours you cannot be electrical cardioverted until you have been anticoagulared for 3 weeks.

The other reason you may feel so bad is the bispoprol. It affects may people quite badly (Not all) . Myself I could not tolerate 1.25mg never mind 3.75! Symptoms for me low hr, extreme

Tiredness, aching arms and chest, no excerice tolerance. I understand if you are athsmatic the side effects can be worse. I was asleep 40 mins after taking a pill.

Th ere are other alternatives, there are other beta blockers, I also tried Atenolol but did not get on with that either, so my GP put me on a calcium channel blocker instead. I understand there is another beta blocker called metroprolol which some people on this forum find much better. I never tried it.

You will find a fib is not one consistent condition, it affect people differently. Similarly the drugs also affect people differently. It's a matter of finding what works best for you. When you do see your EP or cardiologist or even initially your GP, you need to be firm about the havoc the drugs may be causing. It is very difficult to differentiate between the symptoms of a fib and the symptoms of the drugs for you , never mind the doctors hearing it second hand.

I myself am no longer taking any drugs since May 15th, as I had a pulmonary vein isolation (pvi) ablation at the end January this year that stopped the af( so far).

It took 6 months from deciding I wanted to take this route to having the ablation, then (owing to some other issues) 3.5 months to get off the drugs.

The other thing you need to do is the most difficult, but you know it because you have said it: you believe stress has caused this then you need to reduce/stop stressing and certainly not let the afib add to your problems. The afib and symptoms can be better than it is now.

I am certainly not the best to advise on stress relieving. Other people on the forum find relief through "mindfulness" I know little about it, but perhaps someone else can advise you.

Regards

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thanks so much for your extensive reply and for taking the time to, I do appreciate it. I’m on my way to hospital to see my husband right now - it’s a very stressful situation and difficult to stay calm but i’m really trying. I’m going to mull over your reply and google some stuff you mentioned - thanks again

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Just wanted to say that your post was excellent. It's good to read a message that is so well constructed and helpful.

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Thanks

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Sorry I should have said I knew my symptoms when on the bisoprolol were caused by the bisoprolol and not the afib , as when in afib I was totally asymptomatic. I only knew I was in afib owing to the high heart rate showing on my Garmin gps heart rate monitor, nor because I felt ill or anything. I was only diagnosed because if this - I rang 111 to query the high resting rate at 165bpm.

I have been running at 243bpm without symptoms, I was not even noticeably slower than normal ( I did stop when I realised how high it was)!.

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it’s so strange to me how some people don’t even realise they have AF as I felt so weird and dizzy as soon as it started - it’s certainly a perplexing condition

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It is extremely variable. Personally, I have an underlying structural heart issue that makes af attacks very noticeable (I marvel that some can barely notice it!)

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My Afib was also triggered by stress. I ended up leaving my position as a manager and took a less stressful job in the same company. It helped, but Afib persisted. I had an ablation done which causes the Afib to become persistent, much worse than before. Another ablation was done 3 months later, but did not correct. I am now on Dofetilide and it's been wonderful. 2 years in now and only an occasional breakthrough - typically during a stressful event. I understand your pain, persistent Afib is debilitating. It's depressing and impacts everyone around you. You will find that many people get relief from ablation - I was not one of those. But the right medication is out there for you.

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glad you’re ok now, thank you for the good wishes

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Run upstairs. Wow I wish eh? If you look at my neck on one side you can actually see the artery(think it is) bouncing about in time with my heart, pretty scary. By the time I manage to get upstairs my arms and legs have had it and I struggle to breathe. Takes me ages to get control. I’ll see how you get on. Let us all know please. 🤞😺

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horrible feeling isn’t it? I’ll update after the echocardiogram next week 👍

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Hi afibbyfabby yes it is a horrible feeling. Looking forward to your update after echo.

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So I just had the echocardiogram with Doppel - I know it sounds silly but I found it so embarrassing! Consequently my heart rate shot through the roof and I was told by the technician to try and calm down. Also hearing my heart swishing and whooshing didn’t help, lol. I asked if he could tell me anything afterwards but he just said I would need to see the cardiologist. Next appointment on 4th Jan. Still in permanent AF, still breathless on any exertion but I have found taking the meds at night better for me, so thanks for that advice on here. Will update again next year. Hope everyone else is doing ok and have a good Christmas

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So I just had the echocardiogram with Doppel - I know it sounds silly but I found it so embarrassing! Consequently my heart rate shot through the roof and I was told by the technician to try and calm down. Also hearing my heart swishing and whooshing didn’t help, lol. I asked if he could tell me anything afterwards but he just said I would need to see the cardiologist. Next appointment on 4th Jan. Still in permanent AF, still breathless on any exertion but I have found taking the meds at night better for me, so thanks for that advice on here. Will update again next year. Hope everyone else is doing ok and have a good Christmas

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Hi there. Have had echo a few times so it doesn’t bother me any more. I am older than you so maybe that’s why. Lol. I have been put on water tablets Ferusamide. 20mg a day. Because of oedema in my legs. Worked first couple of days. Not so much now. Will try and get appointment with my cardiologist after Christmas. Can’t have electrical zap to get back to normal as Afib damaged my heart. Thickened a part of it. I used to have PAF. (Also have other valve probs from childhood illnesses etc.) what a complicated web we weave eh? Have a great Christmas to you and everyone else on here.

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