Well it’s gone from if to when, I suppose I am now fully fletched member of the club.
I woke up predawn on Monday with my heart running ahead of me. Calmly followed my GPs advice and took my usual meds and waited, no dice. Phoned my GP and waited for return call and waited. Was told to take another dose of usual Bisoprolol as a Pill in the Pocket ( her actual words) and wait four hours. There was no need to go to AnE as I was not breathless enough not to be able to talk to her on the phone. Call back in the afternoon if heart still racing and feeling more unwell.
Called back and got one of the partners - was told that bisoprolol is not a PIP and it will only slow the heart rate, not revert to sinus rhythm and it will take up to three days to work on the heart rate. Call back in three days by which time you might have reverted back naturally and if not they might refer me to cardiology.
I felt awful yesterday as my BP went right down and the pulse remained irregular.
I do understand that once you are on anticoagulants, AFib episodes are not classed as urgent, but I was told by cardiology at the time of diagnosis that they still need to know as it will have impact on my future treatment plans. I still haven’t had a follow up with them either and have no way getting to them but through my GP practise and I think they are following a protocol they have for those patients who have already been seen by cardiology. Three days plus however many days it takes once referred seems surprisingly long time.
It’s a difficult balance to be proactive but not unreasonably pushy to look after your heart health.
Any thoughts?
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aFibber55
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Did cardiology give you the number of an arrhythmia nurse you could ring? They are brilliant at sorting problems out. Our you could ring hospital and ask to be put through to them.
I was given no contact numbers as I was only seen at the cardiology receiving unit, not the actual ward and I am still waiting for my follow up. I even asked my GP how I can get in touch with a specialist nurse for advice and reassurance and was told that as my GP she will be able to answer all my questions.
I would ring the hospital. I was in a+e 3 times at the start of diagnosis and I already had a cardiologist. I was told to take an extra dose of bisoprolol and if no change in a few hours to go to a+e. So definitely either go to a+e or ring them.
I know that bisoprolol doesn't stop attacks. Nothing stopped mine and they sometimes went on for 30 hours. They stop in their own good time and I never found anything that stopped them.
Unfortunately, bisoprolol does reduce your blood pressure a little and your heart rate by about 10 bpm. Because my blood pressure and heart rate were naturally quite low the bisoprolol made me feel worse than I otherwise would have done.
I had to take the bisoprolol because the hospital said I must until I had the ablation and after it too. As I had no instructions, just the prospect of a six month check up, I stopped it after three weeks.
I hope that you get help at the hospital. Going to A&E should bring someone down from cardiology to talk to you. It did with me.
Hi Afibber 😊 it is a good idea to keep an AF diary , I have done so since I was diagnose 3 years ago and I record the date/time/ duration of an episode.
This enables me to be precise when I attend a review at the clinic or my GP.
I also record episodes on my Kardia.
I take an extra beta blocker when an episode starts, it does I think lower my racing heart rate slightly .
Thanks all good advice and I have emailed the consultants secretary to chase my follow up and to inform them of my episode and to ask for contact number for advice on the future.
I am also keeping a diary and at the moment use my Fitbit with Cardiogram App. Will ask the consultant if he recommends Kardia. My hubby is already eyeing up my Fitbit.
AAfibber have you received this link from from the AFA this morning, a good read and the short videos are well worth watching and offer a clear understanding to AFA .
My BP was 132/92 and pulse 128 after 5mg of Bisoprolol.
Few hours after taking the second 5mg BP
94/67 pulse 84 and feeling pretty dizzy.
In between the doses I had pulse 100- 128. This was still a lot better that when diagnosed when my pulse was 156 for hours. So this time I didn’t feel quite so poorly.
I had some progress today and it seems that I am back to normal rhythm too. 36 hrs.
I spoke to someone on AFA helpline and I have been on email contact with my consultant’s secretary. I also did the new AF Association education program that popped up on the forum.
It’s a learning curve and in a way I am glad now that I have had my first non AnE episode and know roughly what to expect.
I suggest you read the post by Maddiegran about her cardiologist appointment which explains clearly why letting AF ‘run’ for a long time is harmful if repeated frequently. Hopefully you will soon get more effective treatment 🦋
Hi Afibber I think when first diagnosed many of us say 'oh my god, there is something wrong with my heart I am doomed' when if fact quite large proportion of the population have AF or will have it and learn to live with it .
If you are in the UK your treatment is laid out in a clear pathway by NICE, diagnosis, stroke risk assessment with CHADS, medication, if that fails an ablation is offered. No matter who you see or when that is the set protocol. See below for NICE pathway.
I have frequent highly symptomatic episodes of P-AF 𝙗𝙪𝙩 𝙄 𝙙𝙤𝙣'𝙩 𝙝𝙖𝙫𝙚 𝙘𝙝𝙚𝙨𝙩 𝙥𝙖𝙞𝙣 𝙖𝙣𝙙 𝙩𝙝𝙖𝙩 𝙞𝙨 a 𝙢𝙖𝙟𝙤𝙧 𝙛𝙖𝙘𝙩𝙤𝙧 to my decision making ,
I have never been to hospital for help during an episode. If I had chest pain I would dial 999.
AF is not an 'emergency' it is a chronic condition and I decided from day one that laying on a trolley for 15 hours in my local 'failing' A&E where people have died waiting to be assessed unable to get off the trolley to pee {something you do a lot when in AF) was not for me. That was guaranteed to raise my anxiety levels and be no help at all to my AF . I told myself If was going to die it would be on my crisp white lavender scented sheets looking out over the fields of sheep to the hills not in some hospital.
Far better to learn to be calm, to breath well to ensure a good oxygen supply to the heart and to monitor my condition myself.
I am not so dramatic in my thinking these days 😊 AF is an unpleasant inconvenience I live with .
When diagnosed I also did lots of research , read all the studies on lifestyle changes, adopted them and I think by doing so I slowed the progression of my AF for 3 years . I went from increased frequency and two weekly episodes to occasional episodes, then to once a month and recently back to 10 day episodes so I am going to start again with a 10% loss of body weight to see if that helps.
Good luck with your AF journey 😊 I am sure it will become easier for you in time...x
Hello Manometer 😊 I take Apixaban and the beta blocker Nebivolol ,No I don't have a PIP other than taking an extra dose of beta blocker to try to help control my my heart rate at the start of an episode. I was never prescribed a rhythm control PIP like Flecainide which might have been useful last year before my episode became too frequent again. I am soon to be prescribed a daily dose of Flecainide but will postpone taking it if another round of %10 weight loss reduces the frequency of episodes .
Thank you for your reply. Good to know that weight loss helps.
I am taking Propafenone/Rythmol to reset but have had more frequent episodes that seem to last longer. My cardiologist wanted to put me on Multaq which is the replacement for Flecanide here in the US. From this forum I found out that it isn’t prescribed in the UK any more. Let me know how you are doing on Flecanide (If you decide to take it).
Thanks for taking time to tell about your journey. I am already coming to very similar conclusions. The Nice link was, well nice🤣. Lot of anxiety comes from the unknown. The AFA education thing that came up on the forum today was very good too.
By comparing my first AFib with the second when I was on meds, clearly shows what they mean by “ if you feel very poorly - go to AnE”. As my pulse remained around 128 this time, it made a huge difference compared to over 156, when I was away with the fairies.
Lifestyle changes good too, I have lost over 10kg already and will need to get back to regular walking again very soon.
Yes, lots of thoughts! Nurses and GPs are only generalists and sometimes do not handle AF well. It depends very much on the practice. I take it you're in the UK with this level of care. I don't know enough about Bisoprolol to comment though it does lower HR and BP as it's s beta blocker, and it may be correct it doesn't address arrythmia. Yet it's always what they give you on diagnosis (I was told this by a leading electro-cardiologist) and then they WAIT. And that wait can be 3-4 months. You could try calling your local hospital cardiology unit to ask about progress of dates for your appointment. That's what I did and in the interim I booked a private appointment with one of their cardiologists to speed things up. This usually isn't too expensive. That was you can request a directive to your GP as regards reporting on and dealing with further episodes. The thing is to be on your case -it is totally worth bringing Ng a pain in the proverbial to get you to a place where you can manage your condition and have a life. AF is very badly supported in the UK and what typically happens is - event, A and E, pills and go home - leave - wait - another event, A and E, same pills but maybe more of them....you get the idea. Sorry - hobby horse moment! Do be proactive if you can as it really helps your case and sense of control.
Thanks and well put. The Nice link helped to understand the protocol and it was comfort to know that even if the beginning of this journey has been frustrating and scary at times, the protocol was more or less followed, except for the point about keeping the patient well informed who to contact and when, lack of which can cause more anxiety than the actual AFib episode.
It’s not worth falling out with your GP with, which is exactly why I have been looking for contact with a specialist nurse to talk to. Someone who deals with various kinds of Arrhythmia on a daily basis. It’s important to be proactive and to contribute towards your own QOL, but also not become too much of pain in the neck. Now that I know the usual “waiting game” approach I am happy play along within reason.
There is so much wrong with NHS at the moment, but there is also so much right and 99% of the health care professionals I have encountered once I gotten through the ‘gate keepers” have been amazing. They are all working under really difficult circumstances and doing a great job. 👏👏
I was following a post on Apixaban and one American member commented that Apixaban worked very well for him, but is unfortunately too expensive for him to continue to pay for - sobering thought!
I do agree re the NHS. Amazing at emergencies and fantastic care at that level. Primary care at GP level less so. I'm in Wales which also makes a difference. BTW AFA helpline? How do I find that?
Hi Singwell I guess where you live influences your view on the NHS.
I as diagnosed with AF by letter having managed after 6 months of trying to get myself via a lift from a friend to the local cottage hospital for an ECG during an episode of P-AF to capture the event. After the ECG I sat on a seat outside waiting for my lift back having difficulty sitting upright. No one bothered to ask if I was ok and I felt too ill to speak.
The letter of diagnosis contained a recommendation to start anticoagulants if I met the criteria, feeling stunned I took the letter to the GP who asked if I knew about AF to which I relied very little. She asked if I had a computer and when I replied yes told me to go home and look it up. She also wrote CHADS and HASBLED on a piece of paper and told me to look them up to and and decide if I wanted to have anticoagulants.
I won't go near the local A&E if I can avoid it, it had to be put in special measures having been classed as 'inadequate' , people have died while waiting on trolleys to be seen.
Once diagnosed I got access to the local arrhythmia clinic and had an Echocardiogram , I had to wait months for the results .
3 years after being diagnosed I finally got to see a Consultant EP last week and had to go privately and pay to do so because the yearly clinic had a long waiting list after a delay with C19.
This site with its well informed member and the internet have been my source of information , I don't know how I would have coped without them.
I would recommend that anyone newly diagnosed with AF reads all they can on the subject to become well informed and that includes those in the UK getting to know the NICE guidelines and what should be on offer to you.
As they say "preach". I'm.super grateful for this forum. My brother also has AF. Diagnosed by his GP, never had a cardiology appointment in 7 years. He's learning about AF management from his little sister...
That’s a very sad story indeed. Makes mine sound like a fairy tale! You are right, it much depends where you live, what kind of care you get, but nobody should go through what you have.
Hopefully now that you have seen your private EP he can refer you back to NHS. I have heard of many people having to go privately initially to get into the NHS system of specialist care.
It does seem that a lot of initiative is required from the patient to manage this condition, which is difficult when you are feeling unwell and anxious. Covid really doesn’t help at all.
My two AFib episodes and AnE visits before I was diagnosed, were very unpleasant with very high pulse rate that there was no question of not going in. I couldn’t stand or sit without keeling over, but my first since, although unpleasant and unwelcome in equal measure, was nowhere near as bad. Like some of the ‘oldies’ say, you get used to listening to your own body and once you know the general protocol of treatment, it gets a bit easier.
Hello and I am sorry about your episode. Do have a read of my last post. One of things I learnt at that lengthy consultation was that (despite no result on google) my local cardiology department does have an arrhythmia nurse, available on email. The consultant I saw was clear that in his view here have been many improvements in approaching AF over the past 30 years and his experience was that it is better to treat AF if you can, that it isn’t good for you, and it was clear how little my GP knew.
Beta blockers affect pace, but lowering pace may not improve rhythm but does calm things, Flecainide affects rhythm but of heart not fairly healthy may have untoward effects. Contrast his view with the very laid back views of the private cardiologist I saw previously, and my GP, simply giving out prescriptions.
Thanks - I did read your post and found it really interesting and informative.
Realise that I may have sounded as though something wrong with medication but not what I meant, the problem is the lack of individual monitoring for each persons responses and needs. The cardiologist I saw wanted to know more about the state of my heart before I took Flecainide and for it to be monitored if I take it regularly.
My GP had to be asked for a referral to cardiology, she seemed to think I should just use Flecainide and Bisoprolol as PIP., moving to regular use of these meds if episodes increase, cardiology would not see me for a year, and I wouldn’t be seen as urgent.
Cardiologist welcomed referral so that I could get timely advice, he seemed to imply Bisoprolol not best as regular med if episodes vagal triggered and that if you were Suitable for ablation, better done sooner rather than later and Flecainide should not be started without more knowledge of my condition and reactions.
What a horrible experience. So glad I am here in the US. I can just show up at my local hospital emergency room. As soon as you say it is heart related they take you immediately.
Back before my Flecainide PIP I had many episodes and was told by the cardiologist to go to the hospital immediately. I would advise them I was on Digoxin and Quinidine and they would give me a different drug IV to stop it.
The first few times I was immediately hospitalized in a telemetry unit and monitored for 3 days. They ran all the usual tests on my heart before I was discharged, still taking the useless combo of Digoxin and Quinidine.
On subsequent ER visits my cardiologist was always contacted and I was given an IV drug in the ER and was allowed to return home about 6 hours after I converted.
Then I had an attack that did not respond in the ER so I was admitted and all the tests were run again since it had been a few years since they had all been done. My doctor's partner came in and said he was going to give me a loading dose of Flecainide. If it worked, great, if not then an electro conversion the next day. Thankfully, it worked and I was only kept another 24 hours to make sure I did not have a bad reaction to Flecainide. That was my last hospitalization, and my PIP has always worked within 3 hours to convert me to sinus rhythm.
My current cardiologist said that after dosing myself with no more than 300 mg of Flecainide in a 24 hour period I was to report to the ER and he would admit me to run the tests to see if anything has changed, if I had an attack. He said he had some other drugs in his arsenal that I have never taken, and he would of course try them before an electro conversion because the anesthesia and procedure carries more risks.
But, of course with diet and supplements, he reassured me that there is no reason to believe I will suddenly start having attacks of A Fib again now that I know my triggers and I am doing everything possible to cut inflammation.
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have you received this link from from the AFA this morning, a good read and the short videos are well worth watching and offer a clear understanding to AFA .
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