So I'm 3 months post diagnosis, only taking 5mg Bisoprolol as a rate control strategy.
I have episodes of what I believe to be Afib (very irregular rhythm) regularly - since tracking them at the start of April I've had 47. Longest run without an episode has been 6 days.
They are a roughly 50/50 split between nighttime episodes and waking hours - usually lasting 90 minutes plus for the daytime ones. The heart rate is typically low - 60-80 bpm - but I have had 2 break through episodes in that time where it has gotten up to or past 140.
Echocardiogram is normal, no structural issues with the heart. That's as of 3 weeks ago, so recent and reassuring.
Spoke to my GP last week and he simply advised to stick with the Bisoprolol, this is the treatment strategy.
And....that's it.
The frequency of my episodes coupled with the very symptomatic PACs occurring in the hours leading up to them is quite alarming.
Spoke with my wife last night and we said that we'd give it until August to settle down (we have a long holiday planned) and if it does not we'll go back and see if anything else can be done. I am suffering from pretty strong anxiety currently and undergoing talking therapy for it, and recognise that may be a trigger.
Is this just how it is and how it should be? Should I be going back to my GP and pushing for additional or different intervention sooner?
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It doesn't seem that you've seen a cardiologist or better still an EP....electrophysiologist ie cardiologist specialised in heart rhythm disorders. I would advise you to ask for a referral . If , as is very likely , the wait list is long then if possible could you manage an initial private referral to an EP ( about £ 200)? This is normally well worth the money.
I'm sorry you're experiencing anxiety as well. Unfortunately this so often goes hand in hand with AF. I hope you find the talking therapy helps. ( my husband is undergoing this as I write and finds it totally useless 😑 🙄 but thats just him)
I was not much older than you when my AF started so get it sorted out now and live life to the full.
I'm wondering whether you have a Kardia mobile device. I've found mine invaluable. You can track and identify your arrhythmias and if necessary send a copy to your medics if requested. I've done this several times.
I use an alternative to Kardia called Emay.I am not saying it is better or worse.It may be cheaper.Google or YouTube Kardia Vs Emay.But either is certainly worth the money to catch ecgs to go back to your GP and ask for a referral.If it is affecting you QOL you need to push that aspect .You should not have to put up with it.
The normal procedure is for your GP to refer you to a cardiologist. I would ask to be referred if he hasn't already. Also if this is making you anxious I would think twice about getting a smart watch or kardia...I know people swear by them but it can also make you more anxious.I deliberately haven't gone that route as even having to take my BP causes more anxiety I'd be a wreck with a kardia!
Bisoprolol will not necessarily stop the episodes from occurring . For that you will need an anti arrythmic or an ablation. I think it is disgraceful that at your young age your GP has not referred you to a specialist. GPs are not allowed to prescribe anti arrythmics like Flecanaide. I would not wait till August but go back to your GP and insist on a referral to an EP.
I have to agree with your husband - I have suffered from anxiety since childhood long before Afib appeared, and I found that talking to a psychologist was of no help - I have not endured childhood abuse or bullying of any kind, I did not struggle academically - I do not fit any of their default scenarios - your husband is probably the same - it's just the way we are !!
Pusllanimous , re anxiety, my husband is convinced his strict Catholic upbringing has alot to do with it. (We won't go there.....)He is a staunch atheist now!
I wonder how many people these established religions drive away. I was brought up CofE, baptised, confirmed, all schools from infants to grammar. I now consider myself to be a non-participating in rituals, Pagan😀
I agree with Jalia here. Here in UK you have the right to be referred to a specialist in arrhythmias if your GP can not control your symptoms. You may not know this but in UK GPs are not permitted to prescibe rhythm control drugs unless so directed by consultant level . Bisoprolol is a rate control drug so will do little to limit the number of your events.
That said, yourAF burden does not sound high as many people suffer much longer and more frequent events with rates often well over 200bpm BUT AF is known to be a progressive condition so it needs to be controlled. Please take the advice about seeing an EP.
I often wonder if ten years ago, when I read your comment, my GP prescribed Sotolol for my AF without any cardiologist seeing me whether this could have been the cause of my AF journey. When I did see a cardiologist on one of my frequent attacks in hospital he was appalled at the dose I was on and stopped it immediately. It turned out that it had lengthed my heart beat time and on having a CT angiogram should never have been prescribed in the first place as I had an artery blockage and should not take rhythm drugs.
Yes, totally agree with everyone, you seem to have been left in the lurch to get on with it. I think they’re probably hoping you’ll go away and accept it. Sadly, I think a lot of people do.
It really good that you have an official diagnosis as many take years to get that, when afib isn’t there all the time.
Please try and do what others suggest and ask for a referral to Cardiology from your GP. Unfortunately, that can take time on the NHS, so if you can, I’d also really recommend searching in Google for an Electrophysiologist at a hospital near to you, for a private appointment. They can usually transfer you afterwards to the NHS list if they want to do further investigations, which they will probably do.
Normally you contact their secretaries for an appointment. No referral needed from GP.
My diet is probably a little on the carby side, but I am a bit of a bugger for evening snacks so should seek to cut those out and see if it helps. Dinner time is typically 4 hours before bed, so clear on that front.
Alcohol and caffeine I've completely cut out now, almost 6 months clear on both, as I thought this was all anxiety related before I got the diagnosis. Chocolate seems to trigger it as well (ye Gods have mercy!).
I think we all try and find triggers….but we all need some nice things in our life, otherwise we’d have nothing else 😳
I’m ok with a good, dark chocolate ( 70%) if you’ve ever tried that….you only need a couple of squares. But if you’re absolutely certain, it’s that, may not be worth the risks, but a lot of mass produced milk chocolate has a lot more ‘stuff’ in it.
You don’t always need to cut out caffeine, I haven’t, though only have one cup ( Nespresso) in the morning - but less than I used to. Coffee hasn’t always been shown to be a trigger for many, but if you’re sure it is for you, then yes, not worth the risk.
Oh and artificial sweeteners - they can be a trigger, especially aspartame - and mono sodium glutamate.
Oh and don’t bend over ( to pick anything up off floor etc) after eating, not for a while anyway 😊
In my case caffeine wasn't a problem but coffee was. I gave up all forms of coffee 20 years ago, but continue to drink tea and the caffeine it contains.
Thank you. When I had the holter belt it only caught one episode when I was asleep, so I was unable to correlate the data to the sensation.
I have used the Fibricheck app (at the GPs recommendation) which said that the pulse rhythm I believe is AF was " suspected AF". However, the GP interpreted that at the time and said "Nope". That's why I'm a little ambiguous.
A follow up with an EP and a longer holter belt would hopefully remove the the ambiguity, so is a solid suggestion.
Did the Holter confirm atrial fibrillation? If not, you will save a lot of time and you will be taken a lot more seriously -- and possibly get an ep consult sooner -- with an EKG that confirms atrial fibrillation.
This all suggests getting a Kardia might be something you want to do sooner than later. You don't have to get the more expensive 6L model. The basic Kardia Mobile should be fine for your purposes right now.
I hope you get the best possible treatment soon. Latest thought is that rhythm control -- be at medication or ablation -- is superior to rate control which seems to be what you're on now. Hopefully you will get that cardiac referral soon.
I would definitely see an electrophysiologist cardiologist. They deal with these issues. Never settle. You must be your own advocate. Seek a second opinion.
Maybe push to see a Cardiologist on NHS , or go private like I did although I don't agree with going private, that was February 2023 after an episode in Spain on holiday, he said I need Ablation and had it last July, all good so far good luck
Yes, A/F has to be rate controlled and they use the appropriate meds to allow for this. Lifestyle is definitely a factor with A/F. I was 54 when mine started, I had a full time career and huge responsibility for the wellbeing of the general public and staff alike, it was stressful to say the least, hopefully the course of action you have taken with your stress will help. Those of us with A/F find coping methods, because it is scary when your heart is 'irritable', some listen to music, some go for a walk and if you read the blogs you will see what helps them and might help you. As for GP diagnosis and treatment, he is out of his depth, you need to ask for a referral to see a cardiologist, to properly assess your condition with 24 hour tapes or similar so that they can see how the mechanism and pumping of your heart is doing, then treat drug wise accordingly. The cardio will assess and discuss all options with you, make a plan etc., In the meantime lead your life as best you can, this is not normally a death sentence so continue to live your life as normally as possible, making minor adjustments along the way. I continued to work, went on long haul holidays etc.etc., this, in my opinion, is not a condition you give in to, don't let it lead your life for you. Get a proper diagnosis and medication accordingly and go on from there. For your reassurance, I am now 80 years old and up to 2 years ago when I broke my hip playing competitive table tennis, I had a full and active lifestyle, exercise to music classes, walking etc.etc., and there are others on this wonderful supportive forum that have and are doing the same. We are all here to support you, we have all been through the same journey so ask your questions, learn about the condition, knowledge is a good thing and reassuring at the same time, understanding what's going on and exactly what you can do about it. Good luck!
Thank you for your reply and for sharing your successes. It means a lot reading these stories - the shadow of death definitely feels like it's looming at this point, and hearing that that's not the case from lived experiences is profoundly re-assuring.
And that is exactly the reason we post! We have all been where you are, we have had our highs and lows but the fact that we are still here to tell the tale should be an encouragement to our newer members who are just starting their journey with the nuisance that is A/F. My attitude is that I will be damned if I will let this ruin/rule my life!
I can relate to this to some degree, although when I was 46 I had nothing this obvious, only many ectopic beats. You could do with a good home ECG monitor, perhaps. There are two that I have that work differently and usefully. Your comment that you are stressed might well, if my experience and those of others I know is anything to go by, eventually prove to be very relevant and to be contributing, perhaps a very great deal, to what is happening. Anxiety will not likely be the cause, but it can easily act to magnify many aspects of arrhythmias.
Firstly, the Wellue 24-hour AI ECG can run for a day and uses chest electrodes to produce an excellent noise-free trace (and they now do even longer running versions. There will be noise from movement, however if you toss and turn in your sleep or are very active during the day).
The second is a new device by Contec, the PM20; this creates a 6 lead ECG with excellent clarity using skin contact, however, not electrodes. It runs for up to 30 seconds only, however.
Both will produce useful ECG traces for you to discuss with a cardiologist. The Wellue AI is exceptionally able, but, as with all AI, can sometimes and in some conditions give errors. Mine for example, can state "ventricular tachycardia" when these are atrial ectopics. This s because I have an intermittent left bundle branch block, My cardiologist / EP immediately reassured me on this.
Treatment wise, you have been given the best and safest first-line treatment. %mg is a significant dose. For Ana rhythmic or fast heart, it will do ts work well; but for the periods where your heart is in NSR and acting normally, it will likely slow it too far and create strange feelings and effects as a result, things like chest discomfort, a need to breathe deeply occasionally, tiredness and such like.
Finally, your echo scan and 12-lead ECGs will have showed enough for the doctor to know this is atrial in prison, and thus, essentially "benign". This means that, if you are physically up to it, your holiday will be safe. The main thing is to reduce the anxiety you say you feel, or relaxing times like holidays can become easily ruined. The best way for this is to get a proper diagnosis and to realise the what is happening is truly of no major consequence (as, form what you say, I believe it to be).
Had the same issue with GP; said it was palpitations because I was a woman! So I used a basic Kardia to record the episodes and sent them to private cardiologist. Took up offer of ablation and nothing since so I have been v lucky. He also put me on NHS waiting list and that appointment came up within 6 months so that might be an option for you to explore. Changed GP as well in case you were wondering 😀 Definitely self advocate!
you have already had many sensible answers here, so just to add it is normal for GPs to be a little behind in some areas of treatment - things have developed so fast in the last few years and as general practitioners they can’t possibly keep up with everything. My own GP was surprised by the information I gave him following my diagnosis a couple of years ago! I had been to a talk given by an EP on latest developments in treatment of AF. At this talk I learned the best way ahead was for me to have a cardioversion followed by an ablation. The GP referred me to cardiology but I booked a private appointment as the waiting list was so long.
If your AF is very symptomatic, you are more likely to be offered treatment. I had a low level persistent AF that was very symptomatic and I was soon on a waiting list with NHS for treatment. All better now, no AF!
AF scared the life out of me. Therapy is a positive adventure if the client-therapist relationship is a good one. But it won’t stop AF induced anxiety. Breathing exercises and meditation along with a good app like Balance helped me.
Thank you - I have Balance and am leaning into it heavily. I am slowly calming down, particularly since the echocardiogram came back with nothing of note on it.
I agree with the other comments. I wonder what your average heart rate was before you started the 5mg Bisoprolol. If I were you I’d question whether you need strict rate control, because it won’t stop the bouts of AF.
My own episodes were 200 bpm for about 30-40 mins, but once I got the same reassuring ECG results as you I stopped Bisoprolol altogether. Having worked out that the recovery phase after sprinting was when my PAF kicked off, I now make sure my peak exercise heart rate stays below 150 bpm. I have suffered from bouts of AF since my 40s. Don’t let it slow you down or worry you, and do keep exercising.
Before Bisprolol my average heart rate was low seventies. I think one of the things that threw the GP was that I was not (and still do not typically) experience a fast heart rate with the irregular rhythm, and it stayed at around that level - maybe creeping up to the 80s. At rest now, my heart rate will hit low 50s. I make sure I get up and move around (office job) often to try to keep the rate a little higher than that.
It wasn't until my first episode of rapid heart rate (180 sustained for hours) and a visit to A&E that diagnosis began to progress. I've had 2 or 3 more episodes like that since now.
There is an chance that what I experience as an irregular rhythm is not AF, I guess.
I have brought my symptoms fairly well under control with diet but I have given up a lot, all the naughty stuff. Blood sugar can trigger episodes so all refined sugar needs to go along with dried fruits, honey etc. processed food of all types as it causes inflammation of organs including the heart. If you can adapt your diet to unadulterated food without spices/sauces apart from sea salt for one week, you may notice a difference. Plain meat, fish, milk (not aged cheese) butter (not oils) eggs, veg and fruit, oats, rice - yes, boring I know. Artificial sweeteners are a trigger for some as are vitamin supplements. I strongly believe our symptoms are often due to inflammatory conditions exacerbated by our anxiety. I had to see a cardiologist privately, structurally things are okay but have been waiting since October for a 3 day holter monitor on the NHS. If you haven’t had a blood test, insist on a COMPREHENSIVE one to check for everything. Deficiencies in magnesium, potassium, calcium, B12 and iron can cause these problems.
I'm with you re the diet, all cooked from scratch so I know what I'm eating. Sometimes I get fed up with it but I know from experience if I don't keep it up I feel the difference. My poor husband is delighted when I go to stay with our daughter because he can indulge himself!
That's a long wait for the holter, and I'm surprised by how long many people on here say they wait to see a cardiologist or have tests.
I live in the north east and I can't complain about waiting times I've had on the NHS, including to see my GP. We must be very lucky.
bisoprolol is a rate control drug and something like flecainide is a rhythm control drug which for some (including me) is a miracle drug together with an anticoagulant to hopefully avoid strokes caused through clots forming when the heart is out of rhythm and fast as doesn’t have time to push the blood in And out properly (layman’s terms)
It all sounds very scary but it isn’t snd with the right medication it can be treated. You do need to see a cardiologist or an EP if you are getting so many episodes, but please don’t panic. So many of us have this problem and live to tell the tale for example I started my afib when in my 30s which cardiologist thought it was syndrome X, then discovered many years later afib/tachycardia I’m now 80
As everyone says - yes push for consultation with a cardiologist.
My GP told me a private referral would be like going down a rabbit hole - I insisted and it was definitely worthwhile. It was more like coming out of a rabbit hole, reassuring, and took a lot of the anxiety away ...
Here the local private hospitals require GP referral to see consultants. It may be different where you are but it means they have access to your nhs records. Cost is generally around £200 - 250. Another thing is that in my experience the consultants will usually then plug you into the nhs system under their supervision so it's a good idea to research the lead/senior cardiologists at your regional / County hospital for that reason.
As JillyBeau recommended, please ensure you get tested for any and all possible blood deficiencies.
In my case, an unknown Vitamin D deficiency was discovered at the same time as my paroxysmal AF diagnosis. The link with causing arrhythmias and reducing inflammation is confirmed by research and reflected in my experience of daily Vitamin D3+K2 supplementation reducing the frequency of my pAF from every 30 days to every 113 days (latest average). I take no other daily medications.
Before my GP referred me to a cardiologist, she consulted the cardiologist with all my information including ECG results etc for advice, and to find out what medication I should have.
They had regular contact at the start until I had a face to face appointment with the cardiologist.
Maybe your GP has done the same?
It is scary to know there's something going on with your heart, and you need reassurance.
Maybe you could ask your GP whether they spoke to cardiology re your medication, and find out a bit more about what has gone on 'behind the scenes'. This could help put your mind at rest.
My daughter once told me to be proactive, and if I need to know something but don't like to ask I hear her voice and she spurs me on. And it really helps!
And of course there are the wonderful people in this forum who give great support to everyone ❤️
Yes, definitely worth paying £200 - £300 for a private consultation.
After many years of having hard exercise induced episodes that always self terminated either during or after a bike ride the episodes became more frequent and longer last year, even without exercise, finally culminating in a 5 day afib which led to me seeing my GP.
Like you I was prescribed Bisoprolol 5mg as a rate control
I was still in and out of afib but getting tired and breathless during exertion, much worse than afib before meds where I was asymptomatic, so I decided to have a private consultation, knowing that the longer it's left the more established the rogue electrical pathways become set in their ways and less successful to treat. I researched and chose a leading consultant and was prepared to pay for an ablation.
I saw him a few weeks later, showed him my ecg printout from the GP, he reduced the Bisoporol to 2.5mg and prescribed Flecainide for rythm control which terminated my afib 3 hours later.
As luck would have it, due to a cancellation, he put me in for an ablation 2 weeks later. I'm in sinus rythm now and off meds which is where I want to be.
So if nothing else it's very worthwhile for a consultant to review your case and meds and pass that information to your GP . You can then continue with the meds, wait for an NHS appointment (eventually!) or pay privately for an ablation.
If your Bisoprolol stead leaves you with spikes I would say the med is not controlling your H/Rate.
In actual fact I have persistent AF and was initially diagnosed with rapid AF.
My private H/Specialist sorted it.
Diltiazem low dose of 120mg AM now keeps H/Rate 60s Day was 156avg bpm on Bisoprolol.
But BB Bisoprolol 2.5mg PM is good for control of BP.
Normal me my H/Rate falls to 47avg bpm. Night and neither interfere with that.
Metoprolol BB too is banned now H/Rate Day 186 and pauses at night.
I take Pradaxa 110mg x twice.
And Synthroid for thyroid cancer whereby thyroid plus was removed. The cause of my AF and then stroke.
I'm almost 5 years down the track and controlled on meds.
My rhymn doesn't cause flutters, palpations or pain. I can forget about it until walking up elevations reminds me.
H/Specialists need to decide whether it is rhythm that needs taming and you have the decision of trying cardioversion, then ablation or you may be put on an anti - arrhymic med like flec.... They have a risk of making things worse or indeed solving what's happening with you. Diltiazem by bringing down h/rate in itself working on taming the rhymn. I can't do the other followings because my heart is structurally abnormal seen on ECHO.
All the best but just by putting up Bisoprolol looks like "it aren't working" and that's what happened to me. Drs love putting up doses only.
I would expect better care from your heart specialist -so only an interested one is best.
Everyone has rightly suggested you advocate for referral to Cardiology; just to add one small aspect to that; your local hospital(s) may have an arrythmia clinic, staffed by Nurse Practitioners. This is often quicker and easier to access than a consultant. Ask your GP if this is an option.
So sorry you're having such a hard time. My GP was a waste of time. I took the private route to see an EP, best money I've ever spent. Getting nowhere with NHS cardiologist (not judging his medical expertise as only saw him for 5 minutes when in hospital) as waiting time for an appointment huge. I wouldn't wait until August. Act now! Good luck
Some good advice already on here.I saw an ep specialist early in and the first thing he wanted to see every time was the Kardia results as AF is typically difficult to catch.
I tried a couple of different medication options with varying success and went for the ablation option 4 weeks ago which seems to have made a difference so far.
Spring for a Kardia, take trace to doctor and demand a scrip for anticoagulant, at the very least. If refused, find new doctor. You’re messing with significantly increased major stroke risk!
Most have already summed up good advice here. From your question: Should I be going back to my GP and pushing for additional or different intervention sooner? Yes you should. Once I saw a cardiologist based on my constant flutter, even he said he would refer me to an EP (electrophysiologist) to get the best understanding of the condition. It made all the difference.
Gps have limited experience, you heed to see an Electrophysiologist . If GP refuses, book a private appointment, they will then transfer you to their nhs list. Don't be fobbed off.
My advice would be (if you can spare £200) to go straight to a private EP /Cardiologist. Then you will know the score and what is needed next. If possible use a Kardia device to take readings of the PACs and AF which he/she will find helpful. Private waiting lists are getting longer so don’t delay! The £200 will be the best money you have ever spent.
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