Hi I'd appreciate some advice on others experiences with AF. I'm currently waiting for an ablation but have recently had a quite a dramatic change in symptoms. My episodes are now far closer together i.e 4-6 weeks is now almost every other day. I use flecainide as a PIP and that stops the episodes usually within the hour. Historically episodes were always around 2am but they're now happening anytime except in the night. Finally, my heart has always been well over 100bpm in the past when in AF, and although that's still usually the case, I've just had an episode with a heart rate of 58. I have a face to face with my GP on Thursday so lets see what they have to say. Does anyone think I should phone the arrhythmia nurse, or should I just wait for the GP's advice? Thanks.
Changing symptoms: Hi I'd appreciate... - Atrial Fibrillati...
Changing symptoms
I would phone your arrhythmia nurse as she will almost certainly be more genned up on AF and then you will have a starting point to discuss with your GP
Thanks, I'll take your advice and phone her tomorrow. 👍
I would book a private appointment with a trusted cardiologist asap.
not medically trained, but if you are getting AFib most days, perhaps a regular twice daily flecainide dose would be more appropriate to stop you ( hopefully) going into AFib in the first place. If that worked it woukd be less stressful for you.
That's what I'm thinking the GP might suggest tomorrow, but obviously I don't want to make that decision myself.
I doubt a GP would alter the Flecainide dose without the advice of a cardiologist. Which could take a while. I would book a consultantation with a private cardiologist for general advice. If you have the money it will be the best £200 you ever spend.
Oh dear that sounds difficult. Phone the nurse and if you can, get an appointment with an EP as fast as you can. I did tht and I,m glad I did it now. Good luck.
To be honest, I'm not really sure of the escalation procedure, that's something I want my GP to help with.
As you are already booked for an ablation I would push for this info to be sent to your EP asap so they can advise on taking Flecainide regularly leading up to your ablation or alternatively they may want to bump you up the list.
Thanks, that's what I'm hoping to hear. This condition has gone from an inconvenience to feeling quite serious. This anxiety is fuelling the problem I feel, as I'm in an almost constant state of panic.
You are right but very difficult to control anxiety under the circumstances so that should be something your GP could help with. Best wishes, please let us know how you get on ❤️🩹
I'd see what the GP says, myself, having great faith in my own. GPs see hundreds of AF patients and follow them through their lives, after all, so not only are trained in heart arrhythmias but also have an unusually wide experience.
Steve
🤣 Not in my experience - had several GPs and none of them had a clue, one actually said so!
Yes - there will be some but that’s inevitable in any human institution. Bring on the robot doctors, eh? 
But having spent a chunk of my life working with them, they get my respect in general and I think l most are clued up enough to deal with an illness like a diagnosed arrhythmia.
Steve
I use Flecainide 100 twice a day (not had PIP) but I can tell when it’s due a next dose sometimes due to what heart feels like (and as you say within an hour or so I’m ok)
Obviously check with the medics first but maybe a set regular dose is possibility
I had AFib many years and 2 ablations and recently 2 cardioversions but following the first cardioversion I started Flecainide- unfortunately the CV didn’t last but strangely the AFib appears to have gone and been replaced by an atypical AFlutter (EP thinks it’s due to a combination of previous ablation together with Flec - I’m now awaiting another ablation but EP feels more confident at success of AFlutter than there was with the AFib
As you waiting for an ablation already ,and your AF is getting all carried away,you should be fast tracked. You could also say you would take cancellation.
See your GP and they will take it from there ,informing your consultant. You are likely to need a preventative/ maintainance dose of flecanide meantime. Recommended to have betablocker with daily dose to avoid posdible flutter arising.
This is exactly my story was waiting a long time( covid lockdown etc) suddenly started having lengthy runs of troublesome AF and flutter. Appointment came through in weeks.
All will get sorted Im sure. Meanwhile try your best to stay calm..easy to say I know!
Ps ablation was 15 weeks ago,nsr still,touch wood continues@
Let us know how you get on.
Thanks everyone, I feel a little better having opened up on here, so hopefully my GP can help one way or another.
definitely phone arrhythmia nurse so that the changes can be logged. If you have readings that show the changes send those so they can.be shown to cardiologist or EP.
Hi Private Ryan, my af in the past used to start around 3.30am with a high heartbeat and low blood pressure and it then came more and more frequent. Since the ablation, am currently waiting for another ablation, it has changed and now happens any time, more often than not daily but not for as long and instead of a high heartbeat it is a very low heartbeat and high blood pressure. My GP said it is AF but can't give me medication as I have a low heart beat normally and can't take beta blockers etc. So I think your GP will say the same as mine that it is the AF.
Not medically trained but from experience, I suspect you should go to preventive Flec. (2x daily).
GP may want advice from EP before changing / knowing dose) and quickest way would be to call Arrhythmia Nurse who should talk to EP, get back to you quickly (usually within 24 hrs for me) with advice and then write to GP. If the advice is to go daily, and you have sufficient meds, you can switch straight away and ask GP to issue a prescription when letter arrives from nurse (unless of course they are willing to increase sooner on own account).
Let us know however if GP was willing to increase on own account and without reference to EP, it will add to the forum knowledge base.
Best of luck
GP didn't want to put me on preventative dose of Flecainide, but did say he'd contact my consultant to tell him of my changing circumstances. He also said he'd recommend I was moved up the priority list. I didn't phone the arrhythmia nurse as planned before seeing my GP, but I'll definitely phone tomorrow. I thought my GP was sympathetic, so that at least eased my mind slightly. I guess it's a waiting game now to see how I go over the next few weeks, and hopefully the ablation isn't too far away. Thanks for all the help and concern everyone, it really does make a difference.
Morning everyone. I've just spoken to the arryhthmia nurse and she's going to change my flecainide to a preventative dose, 50mg twice per day. At the same time she's told me to half my bisoprolol to 1.25mg per day, I'm assuming as I now occasionally go into AF with a low heart rate of 55bpm. I'll update if I see any changes good or bad.
Result! I hope this change finds you a good holding situation until your ablation.
This process with quick access to a Specialist Nurse works great: speed of access and response with authority and knowledge to act.
Will look out for update on outcome.
Best of luck.
Yes it was great to talk to someone so knowledgeable and sympathetic, it really helped my state of mind.
Hi there...i have had afib when my hr was in the 50 ,s and even in the 40,s before but it would then shoot up to around the 80 to 90 bpm wen in afib...as for the flecanide being used as a.pip i would seriously think about asking your gp or arrthymia nurse about switching to a daily dose of flecanide as a maintenance dose as thats what i have been put on due to the same problem of more frequent episodes like yourself...it has really helped me a lot so far ..i take 2x 50mg of flec and 1.25mg of bisoprolol ... besbest wishes
I'm now on the same dosage as yourself for both flecainide and bisoprolol. I was told at the end of July that the wait for an ablation is 4-6 months, so fingers crossed I have it before Christmas.
If appropriate, let them know you are available at short notice if they have a cancellation. I was very lucky and my first one was a cancellation just before first lockdown - it could have been 6 mths / a year later otherwise and my QOL had been much reduced (little to no exercise)
Hi , you're lucky on the abaltion front then as i was put on waiting list last march at blackpool hospital and told 12 to 18 months wait as tthere that busy...
This is at Wythenshawe and I'm hoping I haven't misheard at my consultation in July.🤔
I am on the cancellation list already for those who've suggested it.
Yes im sure it will be correct...there will be different lengths of waiting times in different areas...im.kind of hoping that with this new pulse field abalation technique that is now being used in liverpool and Leicester , it might end up.in blackpool by the time of my abalation as its supposed to be less invasive , quicker and with a slightly higher success rate so ive read recently...but i would be grateful for an abalation full stop really...
Another update. I had a bad day yesterday, it didn't feel like normal AF just lots of extra beats most of the day. I've only just reverted to NSR after a continuous run of 12 hours of what felt more like AF, but without the frequent urination I usually experience, that's despite taking the maximum allowed dose of flecainide.
To add to the confusion, I had the COVID booster jab on Friday that's made me feel a little off colour. I was going to go to A&E this morning (first time ever) but I've reverted back to NSR, so that made the decision for me, although the arrhythmia nurse said theres no need unless I have chest pain. I'll phone her shortly to keep her posted, as it could be the alterations to my meds dosages that's caused the changes.
I ended up in A&E last Tuesday, sent there after phoning 111 after not being able to see my GP. Up to that point I'd had almost constant palpitations the whole day, with Kardia telling me I had sinus rhythm with supraventricular ectopy, something I hadn't seen before. I was discharged as my blood tests were fine and I reverted to NSR whilst there. I've been in normal rhythm now since last Thursday morning, the longest for quite a while, so either the medication change has settled down, or it was a reaction to the COVID booster. I'm going to update the arrhthmia nurse, as I don't want them to change anything on the back of the hospital visit, as I'm happy with the way things are at the moment
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