I was of the belief that if my low burden Vagal AF could be controlled without drugs, by using techniques to stimulate the vagal nerve then I would not need to take drugs. The advantage is I would be able to track my AF to see if it worsens over time.
I saw a new EP a month ago and he understood vagal AF very well, he was very impressed with my charts and graphs where I have tracked my nightly AF over the previous 3 months or so. And I mean data which showed exactly how many minutes of AF and how many PAC's and PVC's when in bed.
I also told him of all the ways I could stop an episode, I laughed when he told me he had a patient that could look at a photo of his mother in law and it would bring him back into NSR.
He convinced me to try flecainide 50mg and Diltiazem 60mg twice daily, in the 4 weeks of taking this combination I have not had one AF episode, I feel I don't have AF at all! (I wear my monitor every night still)
Before the meds I was having at least 20 minutes of AF every night, probably 50% of the AF while asleep. Plus 500 PAC's and 250 PVC's every night, those are almost gone entirely also.
My question is what is happening with my AF? If I go off the meds will it be back the same or will it be worse? If I stay on the meds will I have breakthrough AF at some time in the future?
I am seeing my EP again in April, I am planning to ask that I stop the meds and study my data to see what the beast is doing.
Keen to hear what others think.
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OzRob
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Thanks for replying! I was very much like you - always looking for new and unusual idea, always trying to go new paths. And ... often misbelieved and misunderstood, lol!
I was told, I think by Richard Schilling but a long time ago, that flecainide doesn't stop working. Not in the way that say opiods need higher and higher doses as there are no receptors in the body for it. All that happens is that the pathways strengthen and increase. Obviously this is more likely if the rate and AF is not well controlled. The corollary to that is that well controlled rate is less likely to allow the AF to increase.
With the personal monitors we have these days and with advanced tracking we may be able to plot the progression of AF a little better. My new EP might think I am mad in researching my AF...
Unfortunately medical school doesn't train them very well to think. More to memorize and to do.
Jim
excellent question. I would say it might do if the reasons for the atrial pathology still pertain. I found restricting dinner to a light snack no later than 6 helped with my vagal af
Yes, Hidden, I am finding the same. I know I am vagally mediated, but the valsalva manuver and other "vagal cures" don't seem to work with me. But eating lightly, esp. at later meals, makes a huge difference. I wonder if this is a mechanical thing, ie., that food distends the body internally, touching or stimulating something that excites the heart rhythm. Also, upping my metoprolol to 50 mg from 25 has been a huge improvement... not really sure why, unless it's the anxiolytic component of meto that is helping, as I'm kind of the anxious sort :-). Cheers, Diane S.
I take 400mg of Magnesium Citrate each day, that is 400mg of elemental magnesium. Yes, I think Magnesium is one of the most important supplements for heart health.
can you explain what elemental magnesium is in connection with the mag citrate I’ve only ever heard of mag citrate or mag taurate or mag oxide plus a few others but not elemental I would like to know more about elemental thanks
Elemental is the available magnesium to your body.
I take two 900mg tablets of Tr-Magnesium Citrate morning and night. You would think that is 1800mg of Magnesium daily.
The elemental magnesium is only 139mg per tablet, so I am taking just over 500mg of magnesium a day. Your magnesium pill bottle should display the elemental magnesium.
Some types of magnesium don't absorb well, this video from Sanjay Gupta explains it very well youtu.be/oZYXBYAHhN8
Hi OzRob, may I ask what device you use to monitor your AF? I get lots of ectopics, short runs of fast HR etc during the night and would like to monitor them but don't know anything about what to use. Tia.
I use a Vellue AI Monitor, it has a chest strap and can record 24 hour periods.
I also enter all my daily data into a spreadsheet and then use Google Data Studio to provide graphs etc to show my AF over time and where it is more active etc.
You pose an interesting question probably without a conclusive answer, be it from here or from an ep.
What we do know is that afib is progressive. Part of that may have to do with heart remodeling, as the heart can change the longer we are in afib.
So, going by that, I would think that one hand, being afib free on Flecainide freezes the progression, assuming age remains constant which it of course doesn't. So, we would then have to factor in the effect of aging (say your on flecainide for 10 years) into the equation. And yes, you can have breakthroughs on flecainide where either the trigger is stronger than the drug or where the drug is no longer effective at the current dose.
Here's a link to a post of mine earlier today which goes into my flecainide experience, which may also help answer your question. You may have to scroll a little to find it.
I commented in the other post as it well aligned with my conversation. Secondtry has been on Flec for 10 years! And he got AF at the same age I had my first episode.
Yes, totally agree with the ageing bit. So need to keep fit and young in mind and body as part of the program...
I think it a worthwhile test to come off Flec every 6 months for a week or two and use a monitor to track the changes. That would make interesting reading and would show how much progression AF has. Everyone will progress at a different rate I am sure.
I think periodic testing off flec is a reasonable approach. But you also might consider titrating down in dose like I did first, to see how much Flecainide you really need to remain in NSR. If you can't remain in NSR at say 25 bid, then you won't do better with zero Flecainide. As I mentioned, my therapeutic lowest was 25mg only once at night and I was in NSR for a couple of weeks and then some short episodes, likely afib and/or aflutter/atach. Hard to distinguish exactly with the Kardia. Of course, it's possible I could have stayed in NSR for those two weeks completely off flecainide. Got to noodle around if you want to find the sweet spot.
I should mention to complete the picture that in addition to afib, I also have what appears to be aflutter from either the left or the right. And while the flecainide holds the afib very well, the flutter sometimes breaks through.
I will talk with my EP about doing some experiments including bringing the dose down and will use my monitor to record a week or two of 24 hours per day to catch everything. (rather than just the 7 to 8 hours whilst sleeping)
I think I would like to stop meds completely, record as AF returns and then start with smaller doses of each med to record what affect they have on the AF.
On the note of dose reduction I was happily on 75mg for over a year post an unsuccessful ablation. 50mg am 25 pm and I recently titrated post 2nd ablation down to 25 X2 a day as a maintenance dose. Quite a few others here do similarly. Am now off it altogether but with slightly higher HR at present as I adjust but feel well. My arrhythmia nurse explained Flecainide regulates heart rhythm by adjusting rate of electrical transfer- if I understood correctly - so that's its purpose. For many it's an effective drug.
Yes, sounds like a plan. The only thing to keep in mind, at least based on my experience, is that when you start to titrate up after being in afib, it may take awhile for the flec to become effective as you are starting in an inflamed state. That's why I suggested to titrate down first, but I certainly can see your point in wanting to see how things are completely off the drug. Keep us posted on how things go.
About the Wellue, what is your overall experience and how to the ekg's compare to the Kardia? And do you need to use the adhesive for 24/7 recording? How is during exercise? The limitation of the Kardia is I really am not sure what is going on when I sleep and the Apple Watch has limited capabilities there.
My new EP is super impressed with the data it produces, over an 8 hour period it produces almost 500 pages of ecg's. You don't need to sift through these pages as you get a summary as you can see in the graphic I pasted. By selecting an event it takes you to that page.
What I found lacking was tracking over time with meaningful graphs, so what I have developed is a web based entry form that prompts me to enter the number of each event experienced throughout the recorded period. It also asks for what foods you have eaten or anything else that you feel may have have contributed to the results.
The form is linked to a google spreadsheet and Google Data Studio displays all the collected data so you can see over time what your AF is doing.
We were in New Zealand visiting our daughter for 2 weeks over Christmas, so late nights, lots of eating and drinking (New Zealand offer plenty of craft beers so we had lots of beers during the daytime also). My graphs show the AF was far worse over this 2 week period.
As to how best to wear the device, at first the chest strap was not that easy to use. They suggest some water to help the conductivity, what I found really worked well was some gel from Aloe Vera wiped where the strap sits on the chest. You could also use the gel used for ultrasounds.
I did buy 50 of the 3M adhesive patches, but they are not that cheap.
I have only worn mine for 24 hours a few times as my Vagal AF is always at night when going to bed.
Thanks. Sounds great. I would be using it primarily while I'm sleeping to check for episodes I might ordinarily miss.
Any problem with the strap staying on at night? Can you set an alarm to wake you up if you go into afib and/or your heart rate goes above a certain number of beats? If you own a Kardia, would you say the ekg's are equally detailed? Looked pretty good from the screen shot.
I saw one on Amazon for 79 USD but I'm thinking that's just for the strap. Their website has it for 299 USD which is reasonable if it does what I'm looking for.
Strap is fine while sleeping, I only sleep on my back and right side now out of habit.
I bought mine via AliExpress direct from China, it was not called Wellue, it was called CheckMe but is the same product with the same Wellue software. I paid the equivalent of $240 USD delivered.
As to my long term AF tracking software, I have developed it so that it can be downloaded by anyone with a Gmail account so they can use it with their own google/chrome software.
In addition to ageing-which unfortunately of course can’t be controlled -yet anyway! I would add family history/genes and lifestyle (diet, exercise, stress etc.) into the mix. I was (until 2022) on Flecanide daily for 10 years with NO AF (at least that I was aware of) until my AF , which I suspect had still been progressing behind the scenes (partly due to my less than optimal lifestyle!) was set off to persistent, apparently by an NSTEMI (indirectly a week after).
If you stop meds, afib will come back and you keep taking it you might be ok for a while until it stops working. Simple like that.
How did we end up with Afib? Because we treated our heart badly with bad diet, high blood pressure, overweight, stress, sleep apnea or not enough sleep, high blood sugar, high blood cholesterol or high blood triglycerides, smoking, alcohol, inactivity or lack of physical exercise or too much physical exercise and genetics. Try to keep these risk factors under control to avoid progression of your afib. In my opinion, it is the right way to go. We cannot change our genes evidently. For people who had a successful ablation they thought the battle has been won and went back to their old life style and get surprise when the beast comes back and bite them hard.
People talked about digestive problems linked to Afib, vagal afib and so on and so forth. There is certainly a link between them and my question is the following. Before we got afib, we ate as we wanted, we slept on the left side or the right side, we did whatever we wanted with our body so on and so forth. How come now we cannot do anything like before? My point is try to focus to what brought us to that point and try to keep the risk factors under control.
One of the long term consequences of Afib is the enlargement of both atriums and will cause mitral or tricuspid valves leak and would need valve replacement and could cause heart failure down the road. There is no cure but we can manage it and keep it under control and allow us to lead a good QOL and vigorous one until the end.
While I am sure you are right, and that our life styles are important in determining whether we end up with AF or not, that is not the only factor. For example, I remember being diagnosed as a young child with a heart 'murmur' as they called it in those days, just ectopic or missing beats, and running around the playground at age 7 or 8 having 'funny turns' which I now know to be 'palpitations' if not 'AF'. Despite this in my teens I was an athlete and used to push myself to the limit in the mile and cross country at which I was quite successful.
It might be coincidence but I suffered these 'funny turns' most of my life and of course like most young adults abused my body with excess alcohol (which made me feel better) and took tranquillisers due to stress headaches. But I always ate very healthily, took lots of exercise and was never overweight.
I developed AF in my mid 40s after a very stressful worklife burning the candle at both ends, but if I had not had the underlying minor weakness in my heart's electrical signalling I somehow think this may never have developed.
You left out those like me whose first and second afib attacks came after exposure to a drug which has a myriad of very nasty side effects , that can cause a toxicity syndrome that can take years to recover from if one is lucky enough to recover at all.
love this reply I have permanent AF for six years got it at 72 caused by bad life style overweight diet. In those six years all that has changed improving my diet and only have one or two drinks at a time I have lost two stone and more to come. At 78 I feel fine ride my Kawasaki W650 do lots of fishing and now feel better than ever so lifestyle is the big problem plus my wife is ten years younger and keeps me active so try and enjoy and not let anxiety get the better of you 😃👍
That is my point about having a bad liver first and then AFIB. I agree with you but once a person understands a better lifestyle they can get to work on doing better.
I think it is excellent Bob that you looking to solve your AF in a logical way. However, as SeanJax says there is a lot to address and in the meantime you don't want AF/other impacting your QOL. So I would say stick to that relative low level of drugs for 6 months and see how you feel then about making more changes.
My first cardiologist told me that "AF begets AF" - so the more you're in AF the more likely you are to be in AF until it becomes permanent. 16 years on, my PAF is at its lowest level of occurrence since it started (I also keep detailed records and can report only 3.75hrs of AF in the last 14 months). I've taken Flecainide throughout those 16 years, initially as PIP then daily at 200mg, now down to 100mg/day. I doubt if this is sufficient evidence to suggests an corollary to my cardiologist's saying "NSR begets NSR".
I take 50mg c8.00am and 50mg c8.00pm. I used to take 2 x 100mg/day Flecainide and 2 x 1.25mg/day of Bisolprolol. But, over the last 15 months, on my own initiative, I've stopped biso completely and halved the Flec, seemingly without I'll effects. No obvious lifestyle changes either. Who knows why I'm on a good run. I don't expect it to last but I've now got some 'headroom' to bump up the dosage if necessary. Good luck.
Kent, You prove my point that we can't just blindly swallow the "AF begets AF". I have had random PAF episodes for about 14 years. I take metoprolol 50 mg daily, and PIP flecainide 150 mg, which works well. Recently, my EP looked at my heart measurements after an echo, and said "You have had no remodeling in 14 years." OK, good news. My triggers are usually very predictable and usu. controllable (eating too much, too late, anxiety, and not enough rest--I work lots of hours & eat irregularly--all bad!). Both of my parents and 1 bro. had AF. Mom had 1 week of AF, they put her on 100 mg amiodarone, and in 24 years she never had even ONE other episode! We ALL had different etiologies, and AF acted differently on all of us. So I take it with a pound of salt when I hear doctors uttering pronouncements and predictions, because they make treatment decisions based on that. Currently seeking a functional medicine dr. here in the US to delve further into more holistic approaches to treatment. All good health & NSR to you! Diane S.
My AF history spans 16 years now. Started as mainly andregenic and has seemingly progressed to vagal. I've worked out my main trigger as being 'endurance' activity - I am a climber, hill walker, cyclist, outdoorsy stuff. I now avoid the very long walks (over 8 hrs) but occasionally do them. Whether they trigger an AF bout is hard to predict. I think the main conclusion to draw is - we're all different!!
I'd guess that the chances are it will return. It's disappearance might not even be caused by the drugs but by a less stressful mind. Also, it's a condition that can disappear of its own accord, or return equally stealthily, as I have found.
The reality is that doctors don't fully know what brings it on, only that a few treatments make it go away, lessen it or hold it back. Research, especially at an individual level, is still years away from diagnosing the cause.
I believe research on the individual level for AF will be driven by people who have AF. Not so much to find the cause but to understand their own AF.
From many of the responses to my question I have noticed that these members of this forum have trailed different doses without monitoring. And have made conclusions as to why they think their AF is now controlled. If they had personal monitors 10 years ago we know so much more.
With todays personal monitors we can start to track our own AF and over time have a better picture, I would not be surprised that in the future we start to split AF up into more categories through our own research.
You might well be right and your tracking can only be for your good, and maybe the gif of all? There likely is a range of etiologies for the condition although I suspect genetic predisposition to be the number one cause.
I had an email from Wellue promoting their new AI ECG monitor at only US$99 / but not yet with AI analysis in the EU and UK, sadly.
Thanks Rob - I think you gave me the link a while back, but I believe it is still the a Wellue product. I asked the company if it came with AI analysis in the UK and they claimed it didn't yet and was awaiting approval. I can't yet afford the more expensive version but the newer $99.00 seems to offer all I would need.
You have a very interesting question. I was going to post this to the group but it begs to be posted to your question. Here is what I am wondering, is AFIB somehow connected to a slow and sluggish liver removing toxins? This link lists symptoms which I have several of, and then goes into what to do about them. It even mentions if the liver can’t do its job, palpitations result. Pages 12 to 14 were of great interest to me. It’s also why many on this group have said that once they stopped drinking it greatly helped their AFIB. So what I am a going to do is continue to research on how to support the liver more effectively.
To answer your question I was on a beta blocker for years to take the pressure off the heart, but no one ever spoke to me about stress factor and how to relieve stress until after I had a rather serous episode. You are a different medication so that wouldn’t apply.
The liver seems to like to work after we have eaten and at night also which is around 3am but of course we are all in different time zones.
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Reduction in Flecainide and PVC's - any advice please?
Is it possible AF does not progress?
PAF - Ablate or Medicate?
