Had an appointment with Arrythmia nurse today. In AF when I arrived and picked up on ecg twice. My episodes are getting closer together and Flecainide at 100 x2 is no longer holding them.
I am wondering if slowly weaning myself off it and going permanent will be a better bet.
All thoughts gratefully received.
Di
I'm in constant AF, but still take Flecainide and a beta blocker to control the rhythm and rate. Pulse is now an uneven 60-90, if I stop meds my heart rate and rhythm go too fast.
Jean
I can be in AF at 75. Taliking of upping Nebivolol which is 1.25 as heart rate rarely goes above 60
Why would you take a bigger dose of Nebivolol if your heart rate is rarely above 60? Surely you could take less?
That was the Arrythmia nurses suggestion if I came off Flecainide
More Nebivolol would surely take your heart rate down even lower. Beta blockers reduce rate and Flecainide reduces the rhythm. Mind you I'm sure your arrhythmia nurses are more experienced than me.
Thank you for your advice. Will see what the EP has to say
Probably like me you have low rate AF. My resting rate is usually below 60 and rarely goes above 120 at other times. It did go up to 140 for a short time a little while ago - I wear a fit bit so figure might not be absolutely right but it did go up. Can’t for the life of me think what I was doing at the time so just check my rate frequently. I only take apixaban because I couldn’t take any rate control medication as they made me ill.
True. I am too am rarely over 60 and can be in full AF at 75! One visit to resus which was chemically converted from the the high 180s.
Could I ask: are you constantly aware of symptoms? It must be very tough. How do you manage?
I'm rarely aware of my heartbeat at all, when I do I take deep breaths and it soon calms. This is the best I've felt long term since my AF started in 2005. I feel good most of the time, but do get some days when I feel more tired.
This is so helpful for orders to read as many of us fear that it will be worse when persistent or permanent. But my EP told me the heart adapts and that most people are therefore less symptomatic. My brother's in persistent now are barely notices it.
Hi Jean refreshing to see someone who has similar symptoms to me. What's your prognosis or the way forward is there a light at the end of the tunnel?
I think I'm at the end of the tunnel and some days it's clear and others a little misty. Just under the care of my GP.
Sounds so good.
Best wishes and the best of health
I’m the exact same way I can’t function with out the meds and I’m in permanent flutter
At what rate are you in flutter and how long has that been?
135 when not in control but since the meds my rate is fluctuating between 60 and 80 and it’s been like that a year now
Some people can be in afib with a normal heart rate and are basically asymptomatic. If you fall into that category, it begs the question why they put you on Flecainide in the first place.
As far as Flec goes, no weaning needed. If you're on a beta blocker as well, then you might have to wean off the beta blocker. And depending on your Chad score, lifestyle and risk tolerance, you may want to be on an anticoagulant.
On the other hand, if you're symptomatic in afib and one day may want to have an ablation, then your odds of a successful ablation are less if you're in permanent afib, but you probably still have time to test the permanent afib waters before your odds drop too much.
Other than that, I don't see any downside on being in permanent afib in your case. If your doctor differs and is not convincing, then get a second opinion.
Jim
Many years ago my AG was two days on and one off ad Infinitum. My EP decided that I would become permanent within a couple of months but I never did so Flecainide was added to the Pradaxa and Nebivolol. My Chadvasc score is 4! I have had my life back for several years but now the Flecainide is not enough and I don’t want an ablation
Again, I guess the question is how do you feel in permanent afib without the flec and Nebviolol?
If you feel pretty good and don't want an ablation in the future, not sure I see the purpose of the flecainide and Nebviolol. Plus they're not working anyway and you are already on a fairly high dose.
With a Chad 4, the Pradaxa makes sense.
Jim
Just because your EP ‘decided’ you would become permanent doesn’t mean you will. I also have CHADS score of 4.
Hello Hylda2. There is a light at the end of the tunnel and it's called the Wolf Mini Maze (WMM) performed at Houston Methodist Hospital in Texas.It ablates the outside of the heart where the errant electrical impulses originate, and the Left Atrial Appendage (LAA) is clipped, so no more anti-coagulants or rhythm medications are needed.
It is minimally invasive (but more than a catheter ablation) and is expensive at $150,000.
I am sitting on the fence as I can control mine with Flecainide and Bisoprolol.
Good luck to you.
Thanks for your interest but I’m in the U.K.
I am in Greece and may even go to Japan to have it done, if the AFib becomes intolerable !
Mines certainly not that bad. At 78 if I was that concerned I’d try an ablation
One of the members of this forum Japaholic moved to Japan to work. He was very pleased with the treatment he received there. I've nudged him with my reply so he may answer and say how he is and what treatment he's had. He hasn't been on the forum for quite a while so I'm hoping it's because he's well. Jean
Hello Jean. I've corresponded with Dr Ohtsuka in Japan who performs the same mini maze procedure as Dr Randal Wolf in Houston, Texas. He has accepted me as a patient and I am considering going, hence my earlier reference to Japan.
As you might know, it is more invasive than catheter ablation (the scars are formed on the outside of the heart), but the success rate is 95% in NSR, after five years, for lone AFib. I hope that you are well.
If you don't mind me asking, have you been given a price for this ablation? All fairly ok with me, thank you.
Not at all, Jean. Please direct message me. Dr Ohtsuka asked me not to mention it widely, but you are a special case ! All the best.
When the same happened to me I came straight off Flec as I couldn’t see the reasoning to stay on a toxic drug if it wasn’t in the least beneficial. I didn’t go into persistent AF and went to ablation as I was still self converting. When AF eventually returned and became symptomatic again I was offered Pacemaker which thankfully has worked very well for the last 4 years. I still have very occasional AF, normally when I have an infection but am no longer symptomatic.
Just my experience and thoughts. We all react very differently.
Thank you that is very helpful. My husband has a pm and the children keep asking would I have one. Son has had his first ablation
I was prescribed 150 x2 of Flecainide daily, after previous daily doses of 50 X 2 and 100 x 2. After 10 years I was found to be in Persistent AF. I could not feel it, and still can't 7 years later.I have no medical qualifications but I don't think that by neglecting to take Flecainide you can force your AF to become persistent and asymptomatic.
It has been suggested that I take 150 x2 but I worry about not having a pip.
I never had a PIP but didn't need one. Flecainide meant I had 1 or 2 short episodes a year always in the evening. On these occasions I went to bed as soon as I could and AF had gone when I woke up in the morning.
Have taken 150 this morning. Will give that régime a try, could be a while before an EPs appointment
Hylda just a thought,I had a few problems with breakthrough AF even on 150x2 flecanide. It was decided that I should not take anywhete near food as I wasn't absorbing the full dose. I'm now on 50 a.m. and 150 pm..gives me 100 PIP if needed. Thought would mention it xx
I'm now I permanent AF. Was controlled for almost 8yrs using the very toxic Amioderone. Once it stopped working for me , I came off of it and now have an irregular rate of 60 to 100 . I take Diltiazem and Apixaban now and am coping quite well. It's better than that awful feeling when you go from NSR into AF and like Jean , I'm not that often aware of it.
That sounds like a big gamble. You will be increasing your chances of strokes etc. I’m in permanent AF, and would love to have periods when everything is normal.
I'm 72, and in persistent AF (likely permanent, it's been going on for over 2 yrs now). I had paroxysmal AF on and off for about 35 years. I would love to return to PAF! My resting HR is not excessive, usually in the 70s (which I would regard as fairly normal since I'm not fit). Walking the dogs it goes up to an average of around 100, and up to 130s if going "fast" uphill (fast for me is not fast at all!).My main problem is total lack of stamina and almost constant tiredness. I absolutely need a wee sleep after breakfast and after lunch. I have bad days and better days. On bad days I feel off-colour - slight headache, nausea and sometimes a bit tight across the chest, and aware of the AF. On good days I feel fine, not aware of the AF, but can do very little. It is very poor quality of life, and especially frustrating since, until the AF became persistent, I was very fit indeed, running, cycling, hill walking.
With the paroxysmal AF, it was a bit of a nuisance, but no more. I would be pretty well knocked out for a day, tired the next day, then perfectly fine again. Basically, I felt fine 99% of the time. At 60, I could easily cycle 12 miles to work, do a day in the office, then run 10 miles home without even feeling very tired. Now I can do very little without excessive fatigue.
The other thing to consider is that, the more you are in AF, the more likely it is to become permanent as the heart becomes modified. Fine if you are pretty well asymptomatic - but not so great if you are like me! As Jaws66 said, rather a risk.
I guess the problem is that we all respond to different things in different ways, so outcomes are difficult to predict.
Since it took them two years to discover the pain I was displaying was my gall bladder and not in my mind I have always considered medicine an art rather than a science
Maybe a different medication or combination of them would be a better choice than staying in a-fib. Can you discuss this with your doctor?
Hoping to get appointment with consultant soon
Hi,
My experience with AF is very limited in that it first started last December when I was 71. Before it started my HR was usually in the low 50’s and constant when resting.
It started out as persistent AF, I then had a cardioversion and I remained in NSR for 8 weeks and then back to persistent AF for the past 3 weeks.
I take 2.5mg of Bisoprolol which keeps my heart at around 75 when resting, The medication gives me the normal symptoms of tiredness, shortness of breath ( I’m also asthmatic) and I can be slightly dizzy at times.
My first reaction when I went back into AF after my cardioversion was to look at having another one and if that didn’t work an ablation and if that didn’t work then another ablation etc; etc. My knowledge of AF as I said at the beginning of this post is limited so what I was planning to do may not have been possible.
I have over the last week became more accustomed to the Bisoprolol and manage to work round the tiredness issue and also my breathing is much improved, this has therefore got me thinking that maybe staying in persistent AF is not that bad for me.
I have no experience of AF episodes regularly starting or stopping so can only imagine the difficulties that may cause others At 71 I also don’t want to spend the next few years chasing procedures and operations that may or may not be successful. At my age and being in persistent AF lessons the chances of me being successful from what I understand.
So currently left with the dilemma of what I should do.
I have paf and just on apaxiban because I can’t take anything else. My symptoms aren’t considered bad enough for an ablation. My worry is that if this is left as at present can it cause heart failure I. The future. Jane
Anyone tried the Dr Afib Diet
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does anyone else recognise this journey?
