I've been on 50mg flecainide and 2.5mg bisoprolol twice daily, however due to cold extremities and in consultation with the cardiology depart we tried Adizem in February but after a few weeks that seemed to make things worse, and then switched to 3.25mg Carvedilol on 14th April.
But like I saw with Adizem I am getting more and more Afib epsidoes that are lasting longer and longer, sometimes up to 12 hours.
The cardilogy department upped both the Carvedilol to 6.25mg and the flec to 100mg twice daily, but that doesn't appear to have helped.
I've been keeping notes of episodes for the past 4 years, on looking back I noticed when I tried 100mg flec previously it didn't help and I noted that I was getting a regular double beat, which disappeared overnight when I reduced the flec back to 50mg.
So question is, could the extra 50mg of flec be actually making things worse? I'm getting the regular double beats now (ECG attached).
Second question is if I go back to bisoprolol is there any long term risk/complications with cold extremities? I am hoping I can elevate symptoms by wearing more layers/fingerless gloves on very cold days etc
thanks!
Greg
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Flecainide can cause some odd beats. I took it for years, thinking it was doing me good, but last August after years of not being checked I saw a cardiologist who looked at my ECG and said to come off of it right away as it was causing more problems than helping. I did and when I had my follow up ECG a few months later, he said how much better my heart rate looked. I'm just taking Bisoprolol now. Still waiting to feel full of energy though, I was told that my feeling weary was because of having Covid towards the end of last year. He said he'd had it and it had left him tired, as it had a lot of his patients.
I used to have cold extremities and it was discovered to be caused by an underactive thyroid. I'm fine now that I take medication to right that.
Interesting thanks, I was wondering about just trying bisoprolol on its own. Do you recall what the ECG showed that made them take you off it straight away?
I hope this means something to you. My ECG last year showed atrial flutter with variable AV block with premature ventricular or aberrantly conducted complexes. Left axis deviation. Low voltage QRS. Abnormal ECG.
My latest ECG shows an undetermined rhythm, otherwise normal ECG.
I've copied the above from the actual ECG's that I have in front of me.
My latest ECG looks nothing like yours I have a lot of those peaks, going downwards.
I can see that yours lacks a P wave which indicates AF. I'm afraid I don't know anymore than that.
thanks! That doesn't mean a lot to me but was it a higher HR with the pvcs? This is my latest ECG now, after self reducing the flec this morning, I think it looks more normal now with a slight P wave??
Can you email your reading to the cardiology department or arrhythmia nurse if you have one? When it comes to medication, you really need a professional opinion. Patient experiences are informative and helpful to get an overall perspective, but we are all individuals and what applies to one won’t necessarily be relevant to another.
Bisoprolol can have the effect of cold hands and feet and can cause Raynaud’s symptoms in some people but you’d have to discuss this with whoever is prescribing it to make sure it’s appropriate for you or whether a different medication would suit you better.
All people with arrhythmias should have their thyroid checked as a matter of routine so it’s a good idea to check when it was last done and get it repeated anyway.
I’m hazarding a guess that your watch is showing PACs in a pattern of bigeminy. Although most cardiologists aren’t fussed about PACs and PVCs, if you’re in this pattern permanently it’s going to be a high ectopic burden. So I would try and get a 24h Holter if possible, so that these beats can be properly analysed and the overall burden calculated, and then see what the cardiologist reckons might be done about it.
I sent the arrythmia nurses a huge detailed email with a load of sample ECGs, explaining how I get a short high HR period that then drops into AFib for 6-12 hours.
Sadly as in other NHS departments I suspect they are very busy, I had a very quick two line reply saying if high HR then increase carvedilol a third time!
I don't think I'll get much more out of them, the last time I had similar double beats and an elevated resting HR I had a similar one line saying I was fighting off an infection and nothing to worry about. I reduced the flec and the ectopics and high HR dropped overnight to normal.
I think this is a case where with all my stats I can hopefully self diagnose and make it better, I knocked the flec back to 50mg this morning and now at 16:44 the double beats have gone after the early reading I posted this morning.
Sounds like they’re making it up as they go along!
Glad you’ve settled into a more normal rhythm now. Last year I seemed to go into prolonged periods of trigemeny every day, it’s maddening. They were picked up on a 24h ECG and regarded as nothing to be concerned with, as far as “they” are concerned, that is. Not so nice when it’s driving you round the bend, though.
Greg many years ago when I was in A&E with a bout of AF a slightly gung-ho young registrar tried intravenous Flecainide on me and instead of reducing by HR it had the opposite effect. There followed a short episode of panic among the doctors and nurses as they tried to wire me up to the defib machine but luckily things sorted themselves out before they could get it done. So I think for some of us Flecainide reacts differently. I've never had it since.
Your experience goes to show how very different we all are ( and hopefully one of the drugs you take is an anticoagulant if some of your AF episodes last 12 hours!) Good luck finding what works for you!
I wonder whether trying a different beta blocker might help? It seems it might from things I’ve read. For example, one called nebivolol is metabolised in the body very differently from bisoprolol. Both do the same thing in the end on the heart, and both are very specific in their action in affecting almost exclusively the Beta 2 receptors on the surface of the muscle cells of the heart. Sadly, though, and more in some people than others it seems, and as you’re finding, these cell-surface receptors aren’t only in the heart and, in some people, there are plenty elsewhere such as - in your case - your finger’s microcirculation.
I’ve been told that all the anti-arrhythmic drugs are potent and have potentially important side effects. I can’t take flecainide, I was told, owing to that.
Luckily, so far, following my ablation for atrial flutter in 2019, bisoprolol (1.25mg) seems to control any AF I get, which is quite irregular, although more troublesome of late. I have something called LBBB which I think is why I can’t take flecainide or sotalol. Apparently they have some risk of affecting the heart’s electrical timing badly.
It’s just occurred to me, re-reading your post, that what you call a “calcium bb” is not a beta-blocker, so nebivolol - which is a true beta-blocker - might be something to ask about?
Yes, sometimes flecainide can cause adverse ekg findings and has to be stopped or dosage reduced. As to your case, send the ekg to your ep and let them decide. They will probably want to do a 12 lead at rest and perhaps when you exercise. What you show looks like bigemeny to me, but there also may be more going on. Again, get your ep onboard.
Flecanide is arrhythmigenic, i.e., it is can induce arrhythmias. I was on flecanide for 7 years for rhythm control and suddenly began to experience something similar to what you are describing. Saw my EPS doc and he found that I was experiencing a very troubling rhythm for which Flecanide is known to induce and the drug was immediately discontinued. Three (3) years out, I am only on Metoprolol for rate control. So far , so good. All the best to you.
Hi Greg,I Can't draw any scientific conclusions from my experience, because i have also had a lot of lifestyle changes. ie no alcohol, no caffeine, lower stress levels etc etc. What i can say is, when i cut down on my medication, to my supprise my symptoms improved.
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