Progression question

I saw an EP today. I asked him if afib progresses even if you do not trigger it. He said yes. I asked if it's just regular aging that does it or what, and he says it's its own disease process that just keeps going on.

I wondered what the experience of the people here is? Do you find this applies to you or what? I'm looking for personal experience and not what someone has told you. Is your avoiding of triggers having a good effect on you?

Afib is progressive. That's one of it's most notable characteristics and triggers just don't matter. Your EP was exactly right. It's a disease process that follows its own schedule and everyone's schedule is different, but the trend is always toward more afib, not less.

I experienced my first afib episode in 2002. From there on out I experienced an episode once or twice a year that lasted for almost exactly 6 hours. I did nothing about it because I was a CHADS 0 and it was easily tolerable. That lasted until about 2008 when once or twice a year started evolving into 3-4 times per year, 6 times per year, monthly, and so on. By 2010 I was experiencing weekly episodes lasting 12+ hours each.

From the stories I've heard here and elsewhere from many, many people, my experience wasn't unusual at all except it was actually a little slower than most.

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Shiny Sleeves
I wondered what the experience of the people here is? Do you find this applies to you or what? I'm looking for personal experience and not what someone has told you. Is your avoiding of triggers having a good effect on you?

My story is similar to Carey's. I avoided all triggers, took antiarrhythmic medications and still it slowly progressed for about 12 years until I got an ablation.

I had a disagreement with a poster over on the Mayo Clinic Group Community Forum who insisted that it isn't a progressive disorder. I posted several articles that supported my contention, but he wasn't to be convinced.

Regrettably, it IS very much a progressive disorder. Like spraying a forest fire with a garden hose, you can beat it down quite nicely, and enjoy a good night's sleep. Next morning, though, you may find that the subsoil embers have caught and started the fire again above the surface. This is a common phenomenon in the boreal forests, in case this is news to you. In much the same way, our disordered hearts seem to want to change, to morph, and to accommodate the tendency toward arrhythmia. It's slow in some, and long, but in others it seems to become more frequent and more troublesome within weeks or months. For most of us, an ablation works rather well, even if only for a few years. Some of us need a touchup soon after the first ablation, or we come back in a few years and need a re-do. Others seem to be fortunate and either die much later from other events, natural causes, or from some other disease/disorder. We're each different that way.

We can all hope that we'll be lucky, that either drugs or an ablation will take care of it, and that we'll not have a recurrence inside of 8-10 years, maybe longer.

What was said above. Assuming one actually knows that they have a trigger, avoiding them means, at best, you will have fewer episodes of afib, but it will still progress. I would guess that in the process of trying to identify triggers, those that think they have found one are very, very likely to be wrong. Afib just happens no matter what you do. I have been playing the game for about 27 years and have had two successful ablations. The only questions is - when will it return?

(My Doctor) said (Afib Progresses). I asked if it's just regular aging that does it or what, and he says it's its own disease process that just keeps going on.

I don't think there's a simple answer yet to that question. It may seem that way to cardiologists and to many afib sufferers, but that could be in part because cardiologists tend to see more of the chronic (progressive) cases of afb than one offs. And forums like this are also mainly populated with chronic suffers. I never sought out an afib forum for the first 40 or so years of my afib journey because it was both non progressive and a non factor in my life.

Specifically -- First episode of afib over 40 years ago. Cardioverted . Next episode ten years later. Cardioverted. Trigger was quickly drinking a cold beverage which put me into afib within seconds. Next episode ten years later. Same trigger. Next episode ten years later. Cold serve ice cream.

Yes, my afib finally did "progress", and my triggers increased, but by that time I was older and my heart had some "aging" issues such as a slightly stiffened aorta, which several ep's pointed out may have been the cause of the progression. Also I probably could have controlled my bp better over the years. Had an ablation last year and problem hopefully solved.

My brother also had two or three afib episodes, decades apart, but his aorta didn't stiffen and no bp issues. His afib never progressed. Have a friend who only had one afib episode -- after a cold water plunge -- in his twenties. No afib in the decades since.

It's a good question, but without a simple answer.

Jim

Diagnosing afib is not easy. I went for 5 years of occasional irregular heartbeat sessions but was never able to get a diagnosis or catch it on ECG. Then I finally got to an ER while having a session and after the ECG - "Oh yea, that's afib"

There are lots of things that cause or result in irregular or fast heartbeats, but are not afib, so assuming a session of "irregular" heartbeats is afib is a stretch.

My A Fib is certainly progressive. In the beginning 4 years ago the trigger was heat and extreme exercise. I nave been on meds Sotolol to slow the rate. I now go into A Fib about 6 nights a week always from 11pm to 6 am and the events last from 1 to 2 hours. My journey continues due to the poor health care system here in Canada. Basically on the ablation list for 2 years with an estimate of having the ablation this May to August.

Last July My heart was pausing for an average of 9 seconds and this was happening dozens of times, when I was in ER they saw this and I had a pace maker the next day. I tell this story because I asked the EP if he thought that if I had have had an ablation in a timely manner if the pauses would have occurred,? His answer was good question this is quite possible that the pauses were due to my 3 years of AFib events.

Shortly after my first episode in 2004, I learned of the saying, "afib begets afib." Then I had an episode that lasted 2.5 months. I thought my chances of controlling afib were very low. During the episode, my EP wanted me to stay out of rhythm as my afib heart rate was < 100 BPM (as determined by a holter monitor) & said I was doing well. My path to afib was excessive endurance exercise. I proposed a plan to the EP that included modifying endurance training, electrolyte supplementation and a script for on-demand flecainide to convert episodes and minimize the duration of the episode. The EP accepted the plan.

Implementing this plan dropped my AF burden (% time in afib) from 57% in the first four months of my afib journey to 0.05% to 0.02% in most years. The only trigger I had was violating my self-imposed rules on endurance exercise (or in one case stopping the electrolyte supplements after 2 years of no afib which led to afib within 48 hours).

In 2012, I went through a divorce and my control dropped materially. Sometimes no identifiable trigger, also new triggers such as consuming cold drinks fast and the time immediately after sexual orgasm. I thought it was divorce stress, but after about a year I hypothesized that it could be increased calcium intake. When the divorce started, I started stress eating brie cheese wheels and I figured I was getting an additional 250 mg or more of calcium/day from this. I quit the cheese and my control went back to pre-divorce levels.

The low AF burden continued till I had a family member diagnosed with brain cancer about 7 years ago. I started missing electrolyte supplement doses and the AF burden increased. I had a talk with myself and told myself that I had to prioritize myself first and make sure I consumed the electrolytes. My AF burden went back to what it had been. Then, in 2021, COVID vaxxes came along and I had a materially increased AF burden associated with them. I started microdosing daily flec (25 mg/day) and that handled it. I declined any more boosters and was able to stop taking the flec about 8 months after the last booster.

Then very recently had an increase in episodes & burden. Realized I'd increased calcium from canned salmon. Stopped that and then got more episodes with no identified triggers (as I posted here). I assumed that it was progression. Fortunately consuming 100 mg of flecainide before bed has been effective. I then remembered a couple of weeks ago, I'd run out of a vitamin supplement & looking through my cabinets found a jar of a different brand and started taking it. Last night I looked at the label and found that the supplement contained calcium - a surprise. I'd added 300 mg/day of calcium - perhaps the culprit. I plan to wait a few days and test this theory and see if I can reduce or stop the flecainide.



Edited 2 time(s). Last edit at 04/04/2024 03:51PM by GeorgeN.

You're amazing, George.

Are you not concerned about your bone health without enough calcium intake? I have osteoporosis and was told to consume 1000mg calcium per day. Ugh, such a dilemma!

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GeorgeN
Then very recently had an increase in episodes & burden. Realized I'd increased calcium from canned salmon. Stopped that and then got more episodes with no identified triggers (as I posted here). I assumed that it was progression. Fortunately consuming 100 mg of flecainide before bed has been effective. I then remembered a couple of weeks ago, I'd run out of a vitamin supplement & looking through my cabinets found a jar of a different brand and started taking it. Last night I looked at the label and found that the supplement contained calcium - a surprise. I'd added 300 mg/day of calcium - perhaps the culprit. I plan to wait a few days and test this theory and see if I can reduce or stop the flecainide.

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Yuxi
Are you not concerned about your bone health without enough calcium intake? I have osteoporosis and was told to consume 1000mg calcium per day. Ugh, such a dilemma!

I am also sensitive to calcium and my doctor recommended strontium instead (not radioactive!) and it doesn’t bother me.

Are your taking strontium alone? how much? I recently started taking AlgaeCal, which has 360mg calcium as well as magnesium, vitamin D3, vitamin C, vitamin K2, and boron. I only take 1/4 of the suggested daily dose because I am also sensitive to calcium.

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Daisy
I am also sensitive to calcium and my doctor recommended strontium instead (not radioactive!) and it doesn’t bother me.

Edited 1 time(s). Last edit at 04/05/2024 04:16PM by Yuxi.

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Yuxi
Are your taking strontium alone? how much? I recently started taking AlgaeCal, which has 360mg calcium as well as magnesium, vitamin D3, vitamin C, vitamin K2, and boron. I only take 1/4 of the suggested daily dose because I am also sensitive to calcium..

I also take the other supplements you are taking plus Biotin and a couple of other bone supplements.

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Yuxi
Are you not concerned about your bone health without enough calcium intake? I have osteoporosis and was told to consume 1000mg calcium per day. Ugh, such a dilemma!

First, there is a lot of osteoporosis in the maternal side of my family. My late grandmother, my aunt (93) and my late mother all had it. My mother got jawbone necrosis from the bisphosphonate meds. Hence it is something I pay a lot of attention to.

I first looked at calcium epidemiology around 2000 and there are a lot of societies where calcium intakes are 4-500 mg/day (or less) and osteoporosis rates are low, so I came to the conclusion that calcium is not the whole story. I've had a relatively low calcium intake for decades. It was increased as I mentioned about, with negative consequences for my afib. My last DEXA was in 2017 at age 62 and my Z score was 0.0 (means I had the bone mineral density of an average 30 year old male). I do consume lots of magnesium. Less traditionally, I consume boron as 1/4 tsp borax (like for washing clothes) 5 days/week. I do a lot of strength training (primarily isometrics). There is a group that has equipment for training for osteoporosis, Osteostrong. They have locations around the US. One of my female friends has osteoporosis from her bout with breast cancer. She's in her early 70's and is pleased with their program. The developer of the program, John Jaquish PhD has a book on the topic. The Kindle version is only $0.99 US. From data, Jacquish suggests you need to generate loads greater than 4.2 times your body weight to stimulate bone growth. I don't know if this is totally accurate. They also have an iOS app, "Fractureproof." One of the options for the app is to strap your phone to your hip and it uses the phone's accelerometer to gather that data. I use an iPhone with a case with a holster. I put a tight belt on and strap the phone to my hip with the belt & holster. I then will jump rope on a thick piece of plywood and come down as hard as I can on one leg. Once I get that over 4.2 times my weight, I reset and put the phone on the other hip and repeat. I would not suggest this if you have severe osteoporosis. I'd go talk to the folks at an Osteostrong location where their equipment can safely load you to the appropriate level, without injury.

I had an inadvertent test a few weeks ago when I hit the ground hard on an expert ski run, probably at about 25 miles/hour. My wife said it was a hard hit & I agreed. Most of the initial impact was on my right shoulder. Fortunately, other than a little soreness, no prolonged injury. I've had other recent hard hits during outside rock climbing falls as well as coming off my slackline without severe consequences. So I think my bone density is OK.

An update on the calcium. During the time I was taking excess calcium, I noticed my heart rate would either not come down as quick or stay elevated for quite a while after high intensity exercise protocols. Historically, when I quit doing something, exercise wise, my heart rate drops very quickly. I noticed this morning, after being off the calcium for a few days, that my heart is back to dropping quickly.

"Are you not concerned about your bone health without enough calcium intake? I have osteoporosis and was told to consume 1000mg calcium per day. Ugh, such a dilemma! "

I limit Ca+ like George, I make sure my Vit D3 levels are good. Years ago, when I had Osteopenia, I was told to just increase Vit D3, as I was low, and that The D3 would transport the CA+ back into my bones, so I didn't need to take extra Ca+.

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mjamesone
(My Doctor) said (Afib Progresses). I asked if it's just regular aging that does it or what, and he says it's its own disease process that just keeps going on.

I don't think there's a simple answer yet to that question. It may seem that way to cardiologists and to many afib sufferers, but that could be in part because cardiologists tend to see more of the chronic (progressive) cases of afb than one offs. And forums like this are also mainly populated with chronic suffers. I never sought out an afib forum for the first 40 or so years of my afib journey because it was both non progressive and a non factor in my life.

Specifically -- First episode of afib over 40 years ago. Cardioverted . Next episode ten years later. Cardioverted. Trigger was quickly drinking a cold beverage which put me into afib within seconds. Next episode ten years later. Same trigger. Next episode ten years later. Cold serve ice cream.

Yes, my afib finally did "progress", and my triggers increased, but by that time I was older and my heart had some "aging" issues such as a slightly stiffened aorta, which several ep's pointed out may have been the cause of the progression. Also I probably could have controlled my bp better over the years. Had an ablation last year and problem hopefully solved.

My brother also had two or three afib episodes, decades apart, but his aorta didn't stiffen and no bp issues. His afib never progressed. Have a friend who only had one afib episode -- after a cold water plunge -- in his twenties. No afib in the decades since.

It's a good question, but without a simple answer.

Jim

Sounds like you had Vagally Mediated Lone AFIB up until recent years when the issues came up that made it no longer Lone AFIB. Earlier research done by Hans, the site originator showed that VMLAF was less likely to progress into permanent AFIB, compared to Adrenergic, or Mixed-mediated AFIB.

This is more or less the category that a few of us like me and George fall into. There are a few of us like me, GeorgeN, and Steve Carr that have been able to regress their AFIB over a fairly long period of tome (decades). Electrolyte balancing and a Ca+ reduction diet has been a part of this comprehensive effort, that so far has reduced our AFIB.

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The Anti-Fib
There are a few of us like me, GeorgeN, and Steve Carr that have been able to regress their AFIB over a fairly long period of tome (decades). Electrolyte balancing and a Ca+ reduction diet has been a part of this comprehensive effort, that so far has reduced our AFIB.

Steve Carr has kept his afib at bay and calcium reduction was a big part of that. His site (requires free registration). Steve's afibbers.org posts here. Discussion of Steve's posts on afibbers.org here.

Here is a quote from Steve's most recent version of his site (really just a long page): "After numerous years of very careful dietary experiments, it is completely clear that the two factors of equal and greatest importance in my successful dietary protocol are as follows: avoiding excess calcium consumption; and maintaining a significant consumption of standard (ie shop-bought) mushroom varieties. There are other dietary adjustments which I found beneficial, and I discuss them in links elsewhere on this site; but, after the discovery of the tremendous combined benefit from those two major factors, benefits from other adjustments appear modest in comparison, so they are only briefly mentioned below in this Summary."

I should note, I also consume a large portabella mushroom most days. As well, I spend a lot of time, without sunscreen applied, outside and consume K2 as MK4 and MK7 in fairly large quantities as well as D3. The D3 I take as in addition to that I make from UV B radiation increase my absorption of calcium. It is interesting, I'm fair skinned and used to burn easily. With diet changes over the last 15 years, I no longer burn, even with long exposure to the sun. Like rock climbing at 7,500' elevation all day wearing only shorts. Also skiing with no sunscreen.

@Anti-Fib has a very dramatic afib reversal story as he's previously had I think > 50 electro cardioversions, prior to figuring out his plan!



Edited 4 time(s). Last edit at 04/06/2024 07:41AM by GeorgeN.

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GeorgeN
Shortly after my first episode in 2004, I learned of the saying, "afib begets afib." Then I had an episode that lasted 2.5 months. I thought my chances of controlling afib were very low. During the episode, my EP wanted me to stay out of rhythm as my afib heart rate was < 100 BPM (as determined by a holter monitor) & said I was doing well. My path to afib was excessive endurance exercise. I proposed a plan to the EP that included modifying endurance training, electrolyte supplementation and a script for on-demand flecainide to convert episodes and minimize the duration of the episode. The EP accepted the plan.

Implementing this plan dropped my AF burden (% time in afib) from 57% in the first four months of my afib journey to 0.05% to 0.02% in most years. The only trigger I had was violating my self-imposed rules on endurance exercise (or in one case stopping the electrolyte supplements after 2 years of no afib which led to afib within 48 hours).

In 2012, I went through a divorce and my control dropped materially. Sometimes no identifiable trigger, also new triggers such as consuming cold drinks fast and the time immediately after sexual orgasm. I thought it was divorce stress, but after about a year I hypothesized that it could be increased calcium intake. When the divorce started, I started stress eating brie cheese wheels and I figured I was getting an additional 250 mg or more of calcium/day from this. I quit the cheese and my control went back to pre-divorce levels.

The low AF burden continued till I had a family member diagnosed with brain cancer about 7 years ago. I started missing electrolyte supplement doses and the AF burden increased. I had a talk with myself and told myself that I had to prioritize myself first and make sure I consumed the electrolytes. My AF burden went back to what it had been. Then, in 2021, COVID vaxxes came along and I had a materially increased AF burden associated with them. I started microdosing daily flec (25 mg/day) and that handled it. I declined any more boosters and was able to stop taking the flec about 8 months after the last booster.

Then very recently had an increase in episodes & burden. Realized I'd increased calcium from canned salmon. Stopped that and then got more episodes with no identified triggers (as I posted here). I assumed that it was progression. Fortunately consuming 100 mg of flecainide before bed has been effective. I then remembered a couple of weeks ago, I'd run out of a vitamin supplement & looking through my cabinets found a jar of a different brand and started taking it. Last night I looked at the label and found that the supplement contained calcium - a surprise. I'd added 300 mg/day of calcium - perhaps the culprit. I plan to wait a few days and test this theory and see if I can reduce or stop the flecainide.

You and I are similar.

I have episodes from triggers I know I have but neglect to keep track of them or try to sneak a little of something I know is a trigger. Like honey (sucrose). Calcium is also one of mine so I avoid all culprits, even a teaspoon of cream in my coffee, I'm that sensitive.

I'm thinking some people can identify and eliminate all their triggers and use supplements and careful monitoring and be pretty much afib free for long stretches, like decades. I was hoping I was one of them but I'm not so sure I'm that lucky, so I've got an ablation scheduled.



Edited 1 time(s). Last edit at 04/06/2024 10:49AM by Shiny Sleeves.

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Shiny Sleeves
I'm thinking some people can identify and eliminate all their triggers and use supplements and careful monitoring and be pretty much afib free for long stretches, like decades. I was hoping I was one of them but I'm not so sure I'm that lucky, so I've got an ablation scheduled.

I understand completely. At 68, I wonder as I age if I will be willing and able to do what I do to control afib. For example, as I've posted here, I've seen what appears to be a lot more flutter in my episodes & I have found that putting myself in mild hypothermia will convert me back to afib from whence flecainide will convert me to NSR. Will I be willing and able to do this at 80 or 90 or whatever? Same with my strict control of diet and supplements.

This is all so interesting - I know my afib is caused by electrolyte issues, and I have only had a couple of events, but since the last I have had a lot of ectopic beats and arrhythmias. Interestingly, a couple of months before this I started taking calcium by way of algae cal like the other posters on this thread- I wonder if it is linked. But I have to take calcium as I have weak bones. I am having an ablation (PFA) this coming week because I really don't want afib issues at my age (57), I want to travel, work out etc. I hope I am doing the right thing ....

"@Anti-Fib has a very dramatic afib reversal story as he's previously had I think > 50 electro cardioversions, prior to figuring out his plan!"

No that was Susan with > 50. I only had either 44 or 48, I lost track, but only 1 in the last 4 years. I was primarily Persistent, meaning that I had to be Cardioverted to get back into NSR.

It was about 5 years ago, when I was having alot of AFIB issues, it seemed helpless, and my Dr. was out of town, I was having trouble arranging another ECV, and the ER wasn't being welcoming, and I needed a TEE prior to being Cardioverted, and this not normally done in the ER. I went back and read through the entire site going all the way back to the earliest writings. It took about a month, (I was in AFIB this entire time), but it paid off. I now have far less episodes. George helped guide me through, and by utilizing his breathing conversion techniques has resulted in me being now mostly paroxysmal vs persistent.



Edited 2 time(s). Last edit at 04/07/2024 12:49AM by The Anti-Fib.