i Have just come off the phone to my EP and he said I am in permanent afib now and therefore I can come off flecainide
I meant to ask him if I should just stop or wean off them and also if I didn’t feel good should I take it as a pip, but he said something else and told me he would tell my GP to alter the prescription and then he was gone
I can’t get back to him and his Secretary phone keeps going into voice mail
Any help please as a bit confused
Thank you
Pat x
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I can't give medical advice, but can share my understanding of what you have said.
"Permanent afib" is not a condition, but a decision to stop treating afib. It's a decision that should be shared between patient and doctor, but apparently in your case, it was made unilaterally by your doctor!
If you don't agree that all attempts to treat afib should be stopped, then you should contact your doctor to discuss, or find another doctor that may want to continue to treat you, perhaps using different drugs or procedures like ablation, either catheter or surgical.
Again, "permanent afib" is not a specific condition, just a decision, so it can be subjective and vary from doctor to doctor.
Flecainide can usually be stopped all at once, but I would defer to your doctor or pharmacist on that.
Thank you so much Jim for your message. It does go with what I thought. I left a message on the Consultant Secretary's voicemail and also my GP who has the same as me (although not permanent), but he will understand how I feel. Thank you again
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
Yes I think I should wean off flecainide. I had another call from one of the registrars today and he said stop the flecainide and thoughts of the heart and another ablation put on the back burner as he didn’t know that I have recently been diagnosed with a tumour in my pelvic area. Never ends does it
My only comment is that it is never good to just stop medication, I would come off slowly, taking maybe a half over a couple of days to see how it went but I think in your circumstances a chat with a pharmacist might be a good idea.
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
Thank you for replying
Pat x
Despite everything I might wean for a few days as I’ve been on flecainide for about 7 years. Thank you
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
When I was found to be in persistent though asymptomatic AF, I was told to just stop, as the Flecainide wasn't working any more. I discussed it with a GP who has specialist knowledge of AF. He said just stop, nothing will happen. So I didn't take any more. And nothing happened. I continue to take my anticoagulant. That was about seven or eight years ago. I now consider my AF to be permanent, and live with it.
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
Thank you I spoke with my GP this morning (still no reply from consultant or secretary) and he said quite alright to stop flecainide as it won’t help the afib so not worth taking another chemical if not necessary. He said to keep on with the bisoprolol though
The doctors do know better than the internet at times. I’ve just been told to try halving my bisoprolol and yet I’ve read here of the need to taper it very slowly. I mentioned this to my consultant but he said not in my case at all.
On the subject of your bisoprolol reduction. I sincerely hope you have success.
Unfortunately, I think my reduction in Diltiazem has not made any difference. I experienced uncomfortable symptomatic AF a couple of nights ago which lasted 11 hrs. 😩
HR reduced within 3 hrs after taking additional diltiazem - it was another 8 before NSR resumed.
The interesting thing is: I listened to a podcast by Dr Sanjay Gupta about ‘gastrocardiac syndrome’ he also spoke about food items such as gravy granules, artificial sweeteners etc being a trigger for AF
On the day my AF kicked off, I cooked a roast chicken dinner, for quickness I used gravy granules!
Coincidence?
On another note my CT scan is scheduled for July.
I am concerned my anxiety will trigger AF before or during appointment. I am going to speak to my arrhythmia nurse prior to this.
I absolutely hate this condition - it impacts physically and mentally.
Rant on. And oh yes, it is coincidence. I've come back from an appointment with the cardiologist I see and I just can't believe Dr Gupta. I know that he's wonderful for a lot of useful information and a wonderfully comforting bedside manner, but he is becoming a bit of a populist for reasons I can only guess at. My doctor will have none of it. I'm very inclined to believe him in preference to Dr G as he explains the science behind it rather than making unsupported statements about the magic of magnesium or whatever.
He said that my heart, now apparently fluttering once again on top of fibrillating and ectopicising crazily (I made that one up - the word, I mean), is now crying out for ablation number two, with the hint from him that number three would then likely be needed to give 90% success rate. Such fun - but it explains the downturn in energy and the general worsening of everything this past month. He is certain that the cause (for many of us, too, I rather think) is a fundamental weakening of the atrial cells ("substrate") and the conditions that can bring it to fibrillate, flutter and palpitate remain largely unknown - but are not gravy granules or foods in general. He agrees on the possibility of direct heart irritation from movement, exercise, a bloated stomach, constipation and some there things, but is averse to specific food or blaming things like "vagal irritation". That said, definitely do stop using gravy granules just in case and make your own from stock and fried onions. Your AF won't improve one jot, but, my, your taste buds will delight in the new sensation!
Good luck with the scan. My MRI is next week. Did you ask why it's a CT scan rather than an MRI, since the latter has no radiation at all? I gather CT is better for some things and MRI others.
I have a few diazepam which were given for neck troubles but one now and then does help with the anxiety. We share that and, yes, our hatred of this condition. In a month (whether down to bisoprolol or not I might soon find out...) I have worsened significantly.
I cannot understand when the experts tell you “you can live with AF so long as you keep the HR under control”
I usually make my own gravy, the granules are on standby.
Adding onions sounds lovely. I have also heard leeks in gravy is nice.
It’s also interesting to hear your doctor’s view on Dr Gupta. I have since listened to several of his podcasts - I agree, he has a lovely timbre when he speaks.
Then I began to wonder, where does he find the time to post on FB, twitter, YouTube etc, if he is such an expert cardiologist and works both for the private sector, and the NHS?
Today I looked at some of the research he reiterates, it can easily be found online.
He charges £200 for an hours consultation!!!
Anyway, to my scan:
>CT Cardiac coronary
>CT Cor artery calcium scoring
>CT Thorax with contrast
Pencilled in for 1hr 30min.
I will certainly ask the question about CT versus MRI.
Oh yes, I suspect he’s an excellent doctor but not all he claims is supported by research. Still, it is YouTube.
My ablation won’t be for a year, maybe.
You scan is looking for different things from mine, looking at that - that’s why it’s CT. At least both of us are having tests that most people never get, and then any treatment required.
I don’t know what your symptoms are but I’m not in permanent AF like you although it’s pretty much permanent arrhythmia this past couple of weeks (lots of atrial ectopic beats with AF and it seems also a return of my atrial flutter now and then). My symptoms come from the low heart rate and low blood pressure mostly I think - light headed, muzzy, “distanced”, mild chest discomfort. These used to be occasional, but they’ve been daily for a fortnight or more. It’s a strain.
Thank you. It's not that awful, certainly reading from some here. It's wearing and worrying as these things are. I certainly can't do the races my 6-year-old grandson expects of his grandpa any longer! I can cope with the football kick about though, thankfully. ☺️
My HR is similar to yours, Ann, when I get AF, which seems to be every fortnight or so, although since doubling the daily bisoprolol to 2.5mg it seems to be controlled better, although I shall be reducing back to 1.25mg from today for a trial.
I've read often that people suffer when the heart changes to AF. My cardiologist (yesterday) told me people vary a great deal but he believes the cause is often the sudden arterial BP changes that can't be measured on a sphygmomanometer - the suddenness of an ectopic beat, he explained, drops blood flow to the brain instantly, and too quickly for it to adjust, so it responds with a kind of "shock" or panic response. That is certainly how I feel.
Hi, Steve. I'm sorry to hear of the worsening of your condition over the past month. Here's to any interventions providing relief sooner rather than later.
Thanks Brian. I think it's a case of getting used to the "new normal". Now where did I hear that before? My son's colleague (five ablations but still doing occasional English teaching at 76!) has recently had his AF return, this time attracting the friendship of AFl to join the party! He seems to be coping so I'm looking forward to chatting with him about it all.
I hope you are "doing okay" with your own version of "persistent" arrhythmia. I never know whether the label "AF" is a particular one, or, as with me, others also have a kind of over energetic atrium caused by its misconducting this and that.
Ah yes, the "new normal". My new normal seems to change with each passing year (70 in September)! Have you had an opportunity to chat with your son's colleague yet? Interestingly, some conversations seem to help me while others trigger anxiety for one reason or another. I met with my cardiologist last week which resulted in some anxiety. I continue to wrestle with how best to treat my asymptomatic, rate-controlled Afib. One day I'm okay with doing nothing whereas the next day I'm worried about the progressive nature of the beast. And being an avid (and occasionally, obsessive) researcher I can find evidence to support both options though current thinking seems to favor early rhythm control. If I had paroxysmal Afib I'd absolutely treat it in a New York minute but I'm not very impressed with the success rate of persistent AFib treatments in general. But depending on the day I can quite easily find myself thinking it may be best to give treatment a try. I should mention that I had one cardioversion that was successful for 2-3 minutes.
Thank you for wishing me well and, of course, I wish you the same.
Thanks again, Brian. I wish I were asymptomatic! That would be rather nice. In fact, I wish all I had was AF instead some kind of general atrial conductivity issue. But then, wishing gets us nowhere.
Based on my experiences, I would wean off of the flecainide and NOT stop cold turkey. I checked with my pharmacist when my EP said I could stop the flecainide. She said I should wean off of it and this made sense: at one point they had run out and I went a week without it, at which point my afib took off. I took my time weaning off of it and had no problems (though this was after an ablation).
I was taking it twice a day. My pharmacist suggested I cut back to once a day for awhile (I think I did that for one week), then every other day (I again did that for one week). I had no problems because I took it slow, which gave my body time to adjust to the changes.
Cutting the pill in half! As I said in another reply, I have memory issues and you helped trigger a memory! I did cut the pills in half. I was very cautious (I had a bad stretch when they ran out of flecainide the summer before) so, when I cut back, I first cut the evening pill in half for a few days, then stopped it for a few days. Then I cut the morning pill in half for a few days, then took it every other day for a couple of days before stopping it completely. I wish I could remember more clearly, but I'm pretty sure that's what I did because I'm overly cautious. Good luck!
I think I stopped the evening one first (I have memory issues, so I'm foggy on some details even though it was last June). I have to take another one in the morning anyway, so it made sense to me to take all my pills in the morning. I reasoned that any side effects from not taking the evening one would be less bothersome if I was sleeping - and less likely because I was still taking the morning dose. When it came time to cut back to every other day, taking my pill (or not) in the morning would let me gauge how well my body was doing without the flecainide in my system.
Thank you so much. I’ve just been diagnosed with a tumour in my pelvic area so maybe I’ll keep taking the flecainide until I know what’s what then start to wean off.
I hope you’re well having come off the flecainide Were you told to stop because you had become persistent atrial fibrillation?
Yes I think I should wean off flecainide. I had another call from one of the registrars today and he said stop the flecainide and thoughts of the heart and another ablation put on the back burner as he didn’t know that I have recently been diagnosed with a tumour in my pelvic area. Never ends does it
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