Hoping someone can give me some advice - 5 weeks ago I had an ablation for SVT which was more complicated than they thought as it turned out to be a multi focal SVT. However as part of that they discovered Afib present too. Long story short, I’ve been sent home with daily Diltiazem and Flecainide as a PIP. Had a couple of episodes in the week after my ablation, but then no symptoms for weeks - until last week when I had several flutterings for a few seconds, then they’d stop, then start, then stop. During the time when I thought I had no symptoms, my blood pressure monitor continued to pick up an arrhythmia. In the end on Sunday, despite not really feeling anything other than when I’m sat down, and even then not bad symptoms, I finally took 100mg of flecainide because I got myself in a state about the arrhythmia showing on the monitor. Last 2 days have felt nothing, then this evening back to the same - I sit down or stop and I can feel a mild arrhythmia that comes and goes. Blood pressure monitor again picking it up.
Should I be worried about this - blood pressure fine but really don’t want to keep taking flecainide. Thanks so much for advice - I’m new to afib and still learning about it! Kate
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don't know what blood pressure monitor you're on, but most of them are very non-specific for arrhythmias and should not be used as a drug PIP monitoring device. For example, many of them will give you an arrhythmia warning just for having a few ectopic beats. So going by that metric you would be taking Flecainide unnecessarily.
Do yourself a favor and get a Kardia 6L or an Apple Watch, which are much better guides for PIP Flecainide.
I definitely was feeling something when it was recording an arrhythmia, and had done for a number of days, but it’s only when I stop or lie down and really rest that I felt it - (same now). When I’m cracking on in the day, it’s not noticeable, but I know for some people it acts on this way? So it’s no way a full episode, but it wasn’t a normal sinus rhythm either.
Like I said all new to me, so need to learn about the condition and what works for me asap.
I don't think you should worry at all. In multi-focal arrhythmias, there's a good chance some areas were not ablated (I guess, anyway) and so some milder arrhythmias might well still occur.
The BP machine picks up only irregularity. I have started using a home ECG device by Contec (the PM20), as well as one by Wellue (the AI monitor with screen), to determine the nature of the arrhythmias as these offer a wider range than my Apple Watch or when I had a Kardia.
You might consider getting one of these to see more accurately what is happening. The Contec and Wellue are the most inexpensive if bought direct from the manufacturers' websites.
Thank you for your reply Steve - you’re right they didn’t ablate it all. I actually went in not knowing I had AF, but an SVT that I’d had for years which twice had landed me in hospital. It was only when they got in there they discovered it was more complex than first thought - and they also picked up AF on the left, but didn’t ablate any of that - deciding instead to treat with medication. I didn’t have frequent attacks of the SVT but when I did they could be bad hence the decision for an ablation.
So AF all new to me and my heart is definitely doing strange things since I’ve been in hospital. I’ll look into the ECG device - I just don’t want to get more anxious if it picks something up (even though I’ve now got my flecainide and know it is there if I need it).
If a home ECG will increase anxiety, it’s best to avoid one, I suppose. I like them and if anything worrying shows up I can send it to be checked. I prefer that in a way, even though I am a worrier.
The Apple Watch is good in that it restricts its determinations to just a few things. All of the others are potentially more worrying as they can get things wrong. I wouldn’t be without them.
I do but as it’s a PIP I don’t want to use it if no need. I’ve used it twice when I was in definite AF for over an hour, and it stopped it within 10 minutes. I just don’t want to take if not necessary.
Hi, I use Flecainide as a PiP. Highly likely it doesn't work within 10 minutes according to my understanding. 20 mins minimum is more likely. Why don't you ask your pharmacist about this. Because you may well have self converted. Which of course is good news!
I may well have done yes! But it’s a huge coincidence as I’d just taken the flecainide. The first time was more like 40 minutes then the second was definitely less than 10, but I’ll never know whether it was myself or the drug!
I only mention it because it's happened to me. I was discussing it with my EP and he said it was unlikely that the Flecainide got to work that quickly. It could be a placebo effect? And btw I take only 50mg and it seems to do the trick. However I'm older than you I think (68) and only around 53 kilos. I tend to need lower doses than the norm.
Also, in case no-one has mentioned it, Flecainide weeks better on a relatively empty stomach so if you're unlucky enough to get an episode soon after eating it's worth waiting it out for an hour if you can.
Ah thank you - no I’ve been told very little really - just to take it if I have an episode that lasts longer than an hour. I’m 44 so a way to go to find what works for me I think - only 5 weeks into the diagnosis. I only took 50mg too both times and was surprised a lower dose worked - I convinced myself I’d need more!
Good for you. I understand how you feel, as Flecainide is quite a toxic drug. Lots of them are unfortunately 😕. Although I'm grateful for it too. Have you tried breathing techniques an AF episode or ectopics bother you? I find this really helpful and many of us do. DM me and I'll share with you the sequence I use.
Not familiar with flec but would say it probably is that.
Suggest a 24hr Heart monitor to show what happens with each med or both together as you are using them.
Metoprolol stopped because it causes pauses at night.
ACE and Losartan are out too. The cough!
I have CCB Diltiazem AM 120mg for Heart Rate control down to 60s Day, my normal 47bpm at night.
BB Bisoprolol PM for bP control.
A happier life.
I've been able to have a further 2 ops since stroke (not heart) as my 186 and 156 bpm on 2 different BBs, has come down to 60s Day. Always 47avg bpm at Night. my normal.
I was diagnosed with Rapid and Persistent AF in hospital on Stroke day Sept 2019. Caused by AF caused by Thyroid Papillary Cancer found whilst in hospital.
I can understand your confusion, anxiety, and concern as this is all new to you and you have little certainty as to where this might be going. If flecainide helps keep you in sinus, I wouldn’t worry about taking it. But, since it can cause other arrhythmias, you need to be closely monitored by your doctor. ,
Thank you - yes definitely all very new! I’ve taken flecainide twice since the hospital visit for definite and obvious episodes of AF and it worked a treat and quickly too! It’s more when I can’t really feel anything but my BP machine still picks something up that it bothers me, as I don’t want to take it uneccessarily.
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