Advice needed please, diagonised December 2023 with paroxysmal AF by the hospital A&E , given blood thinners and Bisporol but made heart rate to low , so now on sotalol 80mg twice daily, my episodes up to now have been every 7th day going into AF then 48 hours after back in NSR, but now going into AF every 2nd day which last 5 days before going back into NSR, back in September heart consultant agreed ablation is needed but at least 6 months waiting list at Glenfield hospital UK,now that it looks like I’m going into permanent AF what do I do now?
going from paroxysmal to permanent Afib - Atrial Fibrillati...
going from paroxysmal to permanent Afib
Written by
layla3
To view profiles and participate in discussions please or .
Read more about...
49 Replies
•
BobDVolunteer
You need to be tried on an antiarrhythmic drug like flecainide rather than a mere beta blocker. Best ask your GP to contact your cardiologist/EP as GPs are not allowed to prescribe such at first hand.
Hi bob I asked the heart consultant that if I could have flecainide pip he said No cause my body couldn’t handle bisporol as heart rate went to low mid 30s my body wouldn’t cope with flecainide .
Can't follow that at all! What an odd thing to say since they work in totally different ways.
But I’m now on sotalol 80mg twice a day, but it’s not controlling the amount af episodes and the length of time to get back in NSR 😩
I agree with Bob.
Beta blockers in AF are only really of use, imho, when the AF is continuous with a fast heart rate. Then it's of use to slow the heart down if you can't get back into rhythm. But with paroxysmal AF they are only marginally of use and in some cases can actually provoke AF (if the AF is 'vagal' - happens most at night, or other times of natural low heart rate).
Flecainide works to actually modify the rate at which the electrical signals go through the heart tissue. It is true that some aspects of an ECG mean it's not suitable, but it sounds to me like the beta blocker is slowing your rate too much, and it would be best to get an ECG while off it, then reconsider.
Another option is a calcium channel blocker such as Diltiazem. These will slow the heart a bit and also have some anti-arrhythmic effect.
But ablation is becoming more and more a first line treatment, and I would be pushing (as I did in 2002 when my AF went continuous) for an ablation. The sooner it is done, the better.
Sotalol can be pro arythmic and it lowers the heart rate as well. A calcium channel blocker might work. Worth asking about. In the meantime magnesium taurate supplement as recommended by prof Sanjay Gupta London cardiologist and co enzyme q10. Obviously ask pharmacy first. I know getting a doctor's appointment may be difficult. Loads of research on Google scholar about both. Hydrate, water and plenty of it. Reduce stress as much as possible. And ask to be put on the cancellation list. Don't just stop sotalol if advised to do so. Please wean off it.
I think she means that if she takes Flecainide ( only a rhythm control drug) she would have to take Bisoprolol or similar heart rate drug alongside it and it seems that the Bisoprolol lowered her HR too much?Take care
I took Flecainide daily for 12 years. Because I am also asthmatic I wasn't prescribed a beta blocker during those 12 years. The Flecainide stopped all bouts of AF, except for 1 or 2 ten-minute episodes every year.Between years 12 and 13 I was found to be in persistent ( now accepted as permanent), though asymptomatic AF.
That would be my understanding also.
After the lowest dose of Bisoprolol proved too much for me to take after only three days and my surgery couldn’t offer anything else, we saw a private EP, who having introduced me to having a smart phone and a Kardia, and I had sent him a reading of my heart in AF, sent a prescription for Flecainide to my surgery for me to take as a PiP. Now that I take it regularly it has virtually put an end to episodes. An echocardiogram had shown my heart was structurally fine previously. Good luck!
Hi BobSotolol is an anti- arrhythmic/ beta blocker combined.
Cheers
I know.
Short version -- you will not go into permanent afib prior to your ablation so do not worry
With your longest episode five days you're still paroxysmal. Even if they go on seven days, which is called "persistent", your chances of a successful ablation are the same as someone who is paroxysmal. Only if you stay in afib constantly for many, many months does it become long-term persistent, where there could be some scarring and a less chance for a successful ablation. But by then you will have had your ablation..
That said , everything being equal, it's better to be in rhythm than not to be in rhythm. Especially if your symptomatic.. have they talked about changing your medication's? Daily Flecainide has worked for many.
Jim
Thanks for your positive reply, but cardiologist will not put me on flecainide cause he said that if I didn’t tolerate bisporal which lowered my heart too much then he wouldn’t give me the PIP flecainide , so stuck on sotalol which obviously isn’t working, just got to hang in 6 month wait for the ablation 😏
Yes realised now I may go into persistent AF which is scary
I know it sounds scary but actually many people, myself included, tolerate persistent AF much better than flipping in and out. Your body can adjust to it.I was in persistent AF for well over a decade, and still managed a successful ablation, so it doesn't mean an ablation can't work. It just means the percentage rate of success goes down. But a few months is not a long time.
You might consider talking privately ( around £250) with a cardiologist if you can afford that and if, for whatever reason, you can't get to speak to one via GP referral as there are lots of medication options that have not yet been explored. Many people do not respond well to bisoprolol (again myself included) but that shouldn't rule out rhythm control meds. You might also want to ring BHF help line for more medical/ expert advice than we can give as a forum.
Hope that helps.
Ask the doctor about trying Diltiazem instead of bisoprolol. Same function, but should not affect your heart rate as much. If not agreeable, you might want to get a second opinion, preferably from an electrophysiologist (ep). gone for second opinions for an initial consultation and then put on the NHS list for ablation with the electrophysiologist of their choice.it's nothing works. I guess you just have to hang in there.
Jim
It was the electrophysiologist NHS who said no PIP to me put me on urgent waiting list all via NHS
Hi, I can’t understand why you wouldn’t be given Flecanide if you’re a suitable candidate ….. all the tests they do first are ok and it’s safe for you to take. I have vagal PAF and was put on Bisoprolol and Flecanide as pill in pocket. The Bisoprolol took my heart rate down to 31 bpm ( I was told not to worry about this as long as not dizzy etc) . AF episodes were increasing and coming every two weeks (stopped within an hour with 200mg Flecanide) but it all felt like it was getting much worse. Eventually stopped the Bisoprolol and moved to verapamil (calcium channel blocker ) once daily and Flecanide 50mg twice daily. My heart rate is now 50/55 so Bisoprolol caused the problems …..everything has been great since starting Flecanide. I think I’d try and get a second opinion. Best wishes
No the EP will not change my medication, basically put up with it 😏 but my manager at work is not understandable either, by saying why can’t you push demo tables, why can’t you push trolleys out, why can’t you carry heavy items, even tho got a note from GP saying I’m allowed to work but not the above, I think I’ll be getting the sack shortly 😩
AF would be considered a protected characteristic under the disability act as it is an enduring health condition.
So under the disability act then work cannot sack me ?.even though I’m only zero hour contract, but been with the company over 2 years, any advice please
I'm not a solicitor sorry. I can only speak from my own experiences both of the Health condition and as an employee and manager.There's no reason per se why you cant work with AF, including physical work, but if your GP has made stipulations about what you can and can't do there is always a risk that means your employer may consider that's beyond reasonable adjustments and may mean you and the job are not compatible, so you have to be cautious with such things.
You might find union advice helpful.
Are you UK based? I thought having a GP note my protect me from losing my job while I’m waiting for an ablation next April, I still do my job put can’t push pull heavy equipment, so colleagues have to push these out for me, once on demo I can do my job, but feel I’m being penalised by Manager, who doesn’t understand what AF is about and not being nice about it actually nasty to me. I am zero hour contracts and we don’t have a union unfortunately
Yes, I'm in the UK. I don't know your specific situation so I can't really offer specific guidance. There are many variables such as size and nature of the company you work for, your contract, your specific health condition, the advice you've been given , the nature of your work etc.I'm just offering a voice of caution given your work situation does not sound very stable or protective. GP letters can sometimes be very helpful but if they are too specific they can also become unhelpful as your employer can then argue you are not fit for the duties of your contracted work. I would always go for "less is best" on a sick note/ fit for work note, for that reason. But others may take a different approach.
But if its working for you so far, then that's ok.
You can request union advice without being a member btw.
That can be helpful sometimes.
Yes doctor gave me a fit for work note, but it says , no heavy lifting, carrying or pushing of trollies or demo tables, but manager is sort of helping by getting others members of staff to do that for me, I’m a demo girl for a popular warehouse/shop
layla3 If you're on a zero-hours contract, you are more likely to classed as a 'worker' than as an 'employee' (and may even be classed as self-employed), but it depends what your actual contract says. If you're an employee you do have more rights than a worker, so definitely worth clarifying what's in that contract. This is a good starting point...
Hi, following HA in April I was doing ok but then towards end of July I started feeling very tired, had a few phone discussions with GP (based on my Fitbit readings) then beta blocker dosage was reduced as my RHR is in the 40's and even into the 30's overnight, dose reduction made no difference. Then had a face to face with GP in September where AF was diagnosed and was referred to cardiology , also bought a kardia mobile and always says "possible AF". I've had a 24 hour holter and echo, awaiting results which I think will be discussed with me at my next consultation mid December, I reckon I've never been paroxysmal and just went straight to persistent. My worst symptom by far is fatigue so hoping I will be offered at least a cardioversion to try and shock me back into rhythm as don't want any more toxic meds...just wondering do you suffer extreme fatigue, have you been offered cardioversion , are you on any rhythm control meds , whatever I wish you well and that the ablation gets you back into rhythm ..
Hi
In the first instance on Metoprolol extreme fatigue, breathless and pauses at night. M. is a beta blocker. At 186 avg heart rate day I was a zombie and could nt exert myself.
Sotelol is another BB.
Be patient whilst they act to adjust and change meds. Like CCB instead og BB.
cherio JOY. 75. (NZ)
Keep yourself on the ablation list as this still may work well for you. Report all changes of frequency and length of PAF to your cardio team/ EP and tell them that you would be available for a cancellation which may mean you can get there before the 6 months. They may also want to put you on some different or additional medication to help.
For many years my AFib was controlled by Metoperol, but when my AFib could not be thus controlled, I had Oblation Procedure. The blood thinners are more for preventing stroke, as churning AFib can create blood clots which likely do damage when they travel through the rest of the body. Find a doctor that does Oblation procedures and ask their advice. I am 65, and have lived more than a decade with AFib. Also, did you take the covid vax or get Covid. High rate of heart issues related to covid. I caught Covid in 2022, after my oblation and it at least partially reversed the good results of the Oblation I had done in 2021. I know its hard, but try not to obsess and distress over it... Stress makes it worse. Good Luck
I’ve gone from having boats of PAF to permanent AF. The cardiologist recommended that as I can live with the symptoms there’s nought point having an ablation but it will depend on how your symptoms affect you as to whether ones necessary or not. I’ve found that the permanent AF is easier to live with than the PAF.
I agree I have been in permanent AF for almost a year now and seem to function really well with no symptoms. My cardiologist says as long as my rate stays below 90 he is happy. I have had a cardioversion which didn’t last very long. I take bisoprolol apixaban and dapa and a statin my EF is 40-45% but as I said I live a normal life. I must be one of the lucky ones.
Hi
It would god to have some numbers of what your level is.
Heart Rate and BP at rest then variation on exercise etc. 25hr Heart Monitor is one of the best indicators and would have been when you were on Bisoprolol first and then Sotelol 2nd.
In my case BBs did little on heart rate although I got to 10mg.
In comes private heart specialist who introduced me to CCB Calcium Channel blocker NOT A Beta Blocker and on 180mg Diltiazem fell from 156 to 51 in 2 hours. Then adjusted to 120mg CD AM for heart rate Day and now 1.25 Bisoprolol PM for BP best.
Day 60s heart rate and avg 130/69 BP.
Night 47avg bpm heart rate and samr blood pressure night.
It does take a bit of patience to balance ones meds.
cherio JOY. 75. (NZ)
I like yourself have been told I can't take flecainide as I do not have a normal functioning heart and it can be a dangerous drug in those circumstances and can worsen afib. Check with your Doctor to see if that's the reason
hi, try papworth cardio for an ablation procedure, they know their stuff and may get you in quicker, best of luck
if you go into permanent AF you will probably need a cardioversion first.
Since your consultant has agreed to an ablation you are talking Persistent not Permanent AFib.Doesnt feel any different without the right treatment but hopefully you can get this sorted out.I was persistent for 2.5 years before successful ablation.
Only meds I took for 6 years were Diltiazem & Anti coagulant.
sorry to hear this Layla. I have PAF too, a lot less frequent. What blood thinner are you on? And, do you take your meds regularly? (I don’t).
It is generally considered that you are in the best of hands at Glenfield and that is my experience; they now have the latest "pulsed field" ablation equipment, too, which is safer and quicker. Sadly, they also have overly long waiting lists and, I have been told, are working under excessive pressure. I've been waiting for my ablation since June.
As you've been give sotalol, I guess you will have had ECGs and an echocardiogram taken to check the physical state of your heart? Sotalol is one of a family of drugs called anti-arrhythmics that acts directly to restore natural (NSR) rhythm. If you have a home ECG device such as one from Kardia, Emay or Wellue, you will see NSR on the trace when the large peak of the ventricular contraction is both regular and preceded by a tiny blip, the "P" wave. This is caused when the atrium's natural pacemaker, the sino-atrial node (SA node), is working well. When you are in AF, the atrium is chaotically quivering and this temporarily knocks out the SA node, causes irregular, often overly-fast ventricular contractions. This is the part that matters as some people cope entirely well with this "AF rhythm" but others cope entirely badly. When the heart beats faster from AF rhythm, the ventricles fill and contract less well and the heart output is reduced. If you are systematic, this is the reason.
Another drug similar to sotalol is flecainide - you must be offered this, as I was. All of these anti-arrhythmic drugs are stronger and somewhat riskier than the beta-blocker you were first given, bisoprolol, and need some extra precautions while being taken to be sure they don't bring on any unwanted ventricular heart rhythms.
The key is how you feel when your heart is in AF. Much of the effect of AF can be stress related and this has the effect of increasing the heart rate, causing a vicious circle that can be hard to break. This is where the doctors can and should find time to step in to reassure you that all will be well, no matter what it feels like. It can easily feel like disaster is just around the corner. It isn't. The heart copes well despite the atrium doing its own thing. Sadly, the mind is easily determined to sense the worst when the heart is beating out of kilter - but reassurance from tests and doctors can transform how you cope and, this alone, can make AF something that can be lived with.
Steve
hello Iayla3
I was taken off bisporol as my heart rate went to low I keep bisporol as a pill in the pocket only.
I am now taking Flecainide 3 times a day & it works for me so far.
The cardiologist recommended flecainide. Also I have recently had an ILR ( implant loop recorder) Hopefully it will pin point my problem.
Hi it took me a while battling with the medics for them to agree that I couldnt tollerate being on beta blockers as it made me ill with both very low pulse and very low BP (when in AF) i had one consultant who gave me aletter to confirm I should take flecanide as pill in the pocket. I managed reasonably well until 8 years later when max dose flecanide was no longer working and my AF episodes were more frequent. I then got the ablation procedure. In the early days flecanide worked for me , my heart would revert to normal rhythm within an hour or so...suggest they need to listen to your issues and work with you to juggle the risks and work through a plan to give you best treatment that meets your needs
I had to wait 18 months for my ablation at Glenfield. I had it done in Sept last year by Dr Sandilands. I was well looked after and so far so good.🤞🤞 It was worth the wait.!
I was also on Sotalol, same dose as you. I have to take anti coagulants for life, but I was told to slowly come off Sotalol, but got down to 20 mg and my blood pressure soared to very high level and they’ve put me back on 40mg now and I have to take a blood pressure tablet as well, although they’ve reduced the dose of that, as my blood pressure was going too low. Now it’s about right.
Having been paroxysmal for a few years I was in AF all the time from March this year and had an ablation in July. Been in normal sinus since then. The advice from my EP was that the chances of a successful ablation started to diminish after 3 months of persistent (ie all the time) AF but that any sign your heart could go back into NSR (if only for 24 hours) was a positive for the procedure. Good luck!
If you've had an echocardiogram, it's possible the results from that mean Flecainide may not be right for you, but it would be good for you to know that.
My understanding is that Flecainide controls heart rhythm rather than heart rate. I think that's why people suggest you ask your medics about it. Flecainide PIP can put you back into NSR but an echocardiogram is required before prescribing it to be sure your heart is structurally sound.
I'm wondering how high your rate goes when in PAF .. can you try calling the consultants secretary to explain your difficulties, particularly if you have a high rate and it's happening more frequently, say you really need help and ask for a phone consultation with the cardiologist.
Or - as others suggest, and if you can afford it - ask your GP for a private referral to cardiology (usually between £200 - £300) then you can ask your questions and get proper advice on medications ...
sending good wishes xx
Private appointment with a trusted cardiologist before seeing an EP for an ablation.
Not what you're looking for?
You may also like...
From paroxysmal to permanent AF
I started with AF 5 years ago. I was given edoxaban and bisoprolol to manage the episodes, which...
Transition to permanent AF from paroxysmal
I'm curious to know how those of you with permanent (or persistent) AF, experienced the transition...
Permanent Afib
Hi All
I think that for people with permanent
Afib the ablation to restore NSR is not
an offered...
Upgraded from paroxysmal afib into persistent afib…. Deep joy!
Well, following on from my previous post about longest time in afib with pafib. After five days...
Persistent/Permanent AF in preference to Paroxysmal??
I have paroxysmal AF which is now persistent (over 7 days continuous AF only resolvable to NSR with...
I am confused
Two Ablations for paroxysmal AF now have SVT
Paroxysmal or permanent?
Persistent/ permanent AF episode and exercise 
