After a small stroke in 2019, I was finally diagnosed wit PAF. The episodes were infrequent. At the beginning of this year they became a daily occurrence. the longest episodes lasting 24 hours. I was started on 50mg of Flecainide twice a day 3 weeks ago. For the first week I would feel AF starting and then it stopped. I was so happy that something seemed to be working. Then the second week I was having daily episodes again the longest lasting 36 hours. I managed to speak to my GP who has raised the dose to 100mg twice a day. This was Tuesday. I have now been in AF for 48 hours from just before taking the first 100mg dose. I am fluctuating between AF and Tachycardia on my Kardia . I have never had an episode this long.
Please can anyone tell me if this is normal? Should I try and contact my GP before the weekend or should I just wait and see if the Flecainide will work? It is so strange that the episodes are lasting longer the higher dosage I take.
Thanks so much.
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Arabella63
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Thanks Jalia. When the readout says Tachycardia the rate is about 115. AF ranges between that and 95 bpm. Both of those are lower than my usual AF rate. It still feels just as horrible though. I have had a headache all day but maybe that is because I just don't know what to do for the best.
That is not too high a rate but still making you feel unwell. Do seek reassurance from your GP in the morning as of course we are not medically trained ( vast majority of us anyhow).
If it makes you feel any better I've had tachycardia at 120+ for many hours at a time and sometimes days for the past 18 months. It was quite debilitating. It's not right or normal to have it like that of course and mine was recently resolved by ablation.
I would definitely see gp ASAP I'm on 100mg twice a day too but my af is quite well controlled with it its the first drug I'd tried so don't know about others but maybe u need to change your medication
I was on flecainide originally as a pill in the pocket , Sotalol being my main drug, and it worked well as a PIP at first then became less effective so ended up having my first ablation and was put on flecainide daily for three months , I then went cold turkey but when AF Flutter appeared ( previous ablation was for AF ) I then had a second ablation and was put on Amiodarone. My point really is not only are we all so different, but drugs even work differently on the individual as the condition changes. Hope you get a speedy diagnosis from your doctor, mine never really gets involved as refers immediately to my heart consultant which is reassuring.
Take care with the Amiodarone. I was on this effective but toxic shit for ages until it had a deleterious effect on my Thyroid Gland. I have been on Levothyroxine ever since . You have also got to be careful in strong sunlight.
Hi, I learnt the hard way with the sunlight as I now have a small white patch on my face where I sat in the sun without cream for a few minutes by mistake whilst on Amiodarone and it really affected my eyes after being on it for 7 months and was taken straight off it following an eye test. It did some good though as when I went in for my 3rd ablation the consultant said that looking at the ECG and Bloods he didn't want to continue with the ablation as everything seemed to have calmed down so I was sent home from the preparation room. I was put on Dronedarone 6 months ago for will be for another 9 months before I see him again, I am having monthly blood test and all ok.
Glad it has worked out for you, despite the dreadful side effects of the dreaded Amiodarone. I used ‘Factor something very high’ on exposed parts, apart from my hands, which swelled up alarmingly. Stay well"
My Cardiologist insists I take Bisoprolol to prevent tachycardia and flutter which is a common side effect with Flecainide when PAF is trying to break through. 2.5 mg once a day. It is easier to prevent than to stop. I would see your Doc if you can. Also try to get transferred to a specialist as what ever your GP is doing is clearly not working. That is what I did. Mine has been controlled for 4 years now. Good Luck
I am on Flecainide and Bisoprolol for Afib. Like you I started on 50mg and am now on 100mg twice a day, which I have been for about 4 months.
I was in permanent Afib for two months and it is definitely the flecanide, Bisoprolol (5mg twice a day) combination that has restored me to Sinus Rhythm.
However, the flecanide did take a few weeks to work and I also find I have to be really strict with following the instructions on how to take it, which is on an empty stomach and I leave an hour before eating after taking it. If life gets in the way and I vary from this even slightly, I will get Afib either until the Bisoprolol kicks in or a while after the next dose is taken.
I don’t know if this is normal or just me, but my main bit of advice is take the flecanide exactly as the instructions advise.
I hope you get it sorted and feel better soon, Will.
I will echo the previous contributor. Bisoprolol is often prescribed alongside Flecainide, so worth asking if this might help you right now. It will certainly slow your heart rate. However, your GP is likely to have limited further knowledge of what might work for you and better if you can to try and see a cardiologist to get a more expert opinion.
I saw my cardiologist a few days ago and he pointed out that if I had to take flecainide it would have to be accompanied by a beta blocker such as bisopropol. At present I amOn max dose of sotolol.
Hi tunybugr, I can only say what I was told by my cardiologist. I also take blood pressure tabs, maybe that had something to do with it? Maybe we all have different heart probs and need to be treated accordingly? He just psaid it needed to be given with a beta blocker.
Hi Arabella - episodes can last seconds, hours, days, weeks or be permanent so the sooner you seek treatment the better but that’s easier said than done these days. Your HR is not that high but AF can make you feel rubbish at any rate.
If you continue to feel very unwell and don’t get anywhere with your GP you could ring 111? Don’t hesitate to call 999 if you have feel faint, have chest pain or become very unwell.
Is there anyone with you?
I sympathise as have been there and the only thing I could do most days in AF and especially when my HR exceeded 150 was rest and keep hydrated. I tried A&E but in our area the most they ever did was monitor.
Are you monitoring yourself eg: BP, O2 sats, Kardia? That information can help your doctors work out your best treatment plan.
Have you seen a Cardiologist or an EP? Most GP’s, unless they have Cardiac experience at Registrar level, are considered not competent (or were?) to prescribe antiarrythmics because some of these drugs can create other more serious arrythmias - hence the advice to take Beta Blockers.
I took Flecainide back in 2009 but first as a PIP which is one taken only on commencement of AF episode. I was started straight off at 300mg to stop AF. My first dose was medically supervised and monitored for 6 hours, though that doesn’t seem to happen these days. I then went on to daily dose of 100mgx2bd which sort of worked for a while and allowed another 100mg to use to try stop AF episode (300mg is the maximum you may take in 24 hours so on no account self medicate by increasing the dose yourself) but then AF broke through and I was prescribed Bisoprolol with Flec but found the drugs - mostly Bisoprolol - more disabling than the AF so refused to take them.
May I suggest that you ring your GP and ask for a referral to a specialist and find out who has best experience in your area and ask for a referral to them, preferably an EP. Know that AF tends to be progressive so the earlier you can convert to NSR the better.
There are long waits in some areas so I would also consider the possibility of a private consultation.
Sorry I can’t give you more and hope you feel better soon. Best wishes.
Hi CDreamerI do have a kardia now. I didn't get one at first because the episodes were so infrequent. But when they started to become a daily occurrence, I decided to get one. So, hopefully, when I can see a Consultant I will be able to share some results.
You don’t mention whether you are taking a beta or channel blocker with your flecanide. As others have said that is necessary to prevent flecanide s ability to cause extra arrhythmia so do look into it please with your doctor
Echo what others have said ref. Flecanide causing other arrthymia such as flutter,which is a fast rate type. This happened to me as it is recommended to take some type of betablocker to prevent this.( I hadn't been at the time )Now I take both I am pretty stable.
Thank you so much everyone.I have been on 2.5mg bisoloprol since 2019. Perhaps it is not enough now.
I messaged the Surgery this morning about the longer AF, still waiting to hear back.
I was due a review with the Cardiologist back in February, but now my referral is with the Referral Assesment Team who said it would be 10 to12 weeks before a decision was made and If they decided I did need to see Cardiologist again it would be at least 24 weeks until I get an appointment. So that is next year.
Now I am feeling so much worse I was wondering if anyone could recommend a private EP in the Bath area. I feel that I would really like to get some advice.
I think that would be sensible. You may well benefit by seeing the team in Bristol which has an excellent reputation.
Sometimes just having a sensible conversation can be really helpful. Also look up advice about treatments on the AFA website. Hope you feel better soon.
I had an ablation in March at the Spire for the NHS and the procedure was carried out by the EP I am under at the BHI (BRI), it seems as though he carries out procedures at both places
I take Flecainide along with nadalol and it seems to be working well except for some ectopic beats every now and then. My heart rate sometimes drops a little low but other than that no problems. I have been on it since April. Good look and get a cardiologist referral.
I was given metoprolol to take with flecainde, I have been on anywhere from 50 to 150 mg of flecainide, the higher dose created atrial flutter and increased rhythm problems for me. I now take only 50mg with 50 mg of metoprolol. I may have occasional episodes 1-10 min. Before it could be up 65 hours at the highest dose, just had to find the magic dose for me.
So, I managed to speak to a GP today. He first suggested upping the Flecainide but I said I wasn't keen because of the effect it has had on me so far. He then suggested upping the Bisoloprol from 2.5 mg in the evening to twice a day. If that does not put me back in sinus rhythm he said I can slowly go up to 10mg a day. Feeling a little more hopeful now.
Just be aware that Bisoprolol is for HR and BP control & not antiarythmic drug. It can help if Tachycardia flips you into arrythmia. Glad you got to speak to GP.
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