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Progression question

Posted by Shiny Sleeves 
Progression question
April 02, 2024 10:28PM
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?
Re: Progression question
April 02, 2024 11:34PM
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.
Re: Progression question
April 02, 2024 11:46PM
Quote
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.
Re: Progression question
April 02, 2024 11:51PM
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.
Ken
Re: Progression question
April 03, 2024 09:05AM
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?
Re: Progression question
April 03, 2024 09:25AM
(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
Ken
Re: Progression question
April 03, 2024 10:42AM
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.
Re: Progression question
April 03, 2024 02:06PM
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.
Re: Progression question
April 04, 2024 08:20AM
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.
Re: Progression question
April 04, 2024 12:31PM
You're amazing, George. smileys with beer
Re: Progression question
April 05, 2024 12:48PM
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!

Quote
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.
Re: Progression question
April 05, 2024 02:00PM
Quote
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.
Re: Progression question
April 05, 2024 04:14PM
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.

Quote
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.
Re: Progression question
April 05, 2024 05:59PM
Quote
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.
Re: Progression question
April 05, 2024 09:34PM
Quote
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.
Re: Progression question
April 06, 2024 04:12AM
"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+.
Re: Progression question
April 06, 2024 04:28AM
Quote
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.
Re: Progression question
April 06, 2024 07:01AM
Quote
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.
Re: Progression question
April 06, 2024 10:36AM
Quote
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.
Re: Progression question
April 06, 2024 11:13AM
Quote
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.
Re: Progression question
April 06, 2024 01:35PM
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 ....
Re: Progression question
April 06, 2024 10:39PM
"@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.
Zb3
Re: Progression question
May 08, 2024 09:14AM
Oh does it get worse does it? I had thought if you were medicated and kept yourself out of afib it wouldn’t progress. I had frequent afib at 27-28 which came on rapidly - was in afib 14% of the time according to my holter but had it every single day. On flecainide and beta blocker daily now and largely out of afib and medications still working despite the odd break through. I get violent palpitations all the time though which are annoying even if NSR
Re: Progression question
May 08, 2024 12:20PM
Quote
Zb3
Oh does it get worse does it? I had thought if you were medicated and kept yourself out of afib it wouldn’t progress. I had frequent afib at 27-28 which came on rapidly - was in afib 14% of the time according to my holter but had it every single day. On flecainide and beta blocker daily now and largely out of afib and medications still working despite the odd break through. I get violent palpitations all the time though which are annoying even if NSR

Just keep a close eye on it with your EP. For most of us it does progress—or at least the drugs become ineffective—but that isn’t true for absolutely everyone. Whether or not they continue to work, antiarrythmics are potent drugs with side-effects, and particularly for someone your age, going to one of the top tier ablation EPs and stopping your Afib would seem be a good course to seriously consider. I certainly would not want to take an antiarrythmic for decades and decades!

I took Flecainide and a beta blocker for several years. I’d be fine for many months and then I would get a breakthrough, my EP would raise the dose and so on until flecainide failed rather spectacularly for me with major side effects. I then chose to get an ablation and wondered why I had waited so long.
Re: Progression question
May 08, 2024 03:16PM
The literature says that the disorder, the electric disorder, progresses. That is why some people need a second, third, and fourth ablation every two to six years or so. The mechanism that initiated the disorder that led to the first recorded or noticed instance of AF (or other arrythmia) keeps looking for other re-entrant foci, whether the superior vena cava, the coronary sinus, the Vein of Marshal....it goes on and on.

As always, there is wide variation, meaning each of us has a defined path that CAN BE mitigated largely by interventions of several kinds, including diet, control of comorbidities, weight loss, etc.

There is nothing special about me, or about my case and its progression. However, I like to understand as much as I can, and as soon as I learned about the PVI process and its variants, I knew immediately that it was where I was headed. I didn't trust the drugs, even though they did get me through the first three years. Like so many of you, though, my disorder changed, and not in a good way. I still think the big slide came when I had my second MIBI stress test and had to lie on my back sucking air through a COVID mask while I attempted to recover from the effort...which was maximal. It was a truly horrible experience, one I'll never forget.
Zb3
Re: Progression question
May 08, 2024 05:33PM
What sides did flecainide give you? I was put on 200mg a day from the beginning which seems like a high dose. Aside from a lot of palpitations I haven’t noticed any sides yet.

Also interesting to know that even after an ablation the disease will look for ways to progress, therefore necessitating more ablations. Seems hard to win with this one
Re: Progression question
May 08, 2024 05:57PM
Quote
Zb3
What sides did flecainide give you? I was put on 200mg a day from the beginning which seems like a high dose. Aside from a lot of palpitations I haven’t noticed any sides yet.

Also interesting to know that even after an ablation the disease will look for ways to progress, therefore necessitating more ablations. Seems hard to win with this one

I got complete heart block with Flecainide 150 mg twice daily. I weigh less than 154 lbs and so this was too high a dose for me. I also have a common genetic variation that makes me a poor metabolizer of Flecainide, allowing it to build up in my system. My EP should have known better as I kept challenging her on both these issues. Complete heart block is just as it sounds, almost no heart beat. Luckily I have a pacemaker so while it caused me to collapse, it didn't kill me.

There will be advances in treating Afib down the road--there just aren't any on the immediate horizon. So for someone your age an ablation now could buy you time until advances give other treatment options.
Re: Progression question
May 09, 2024 10:32PM
George, how long does it take for the flecainide to convert you? I am wondering whether flecainide doesn't work in some people. Since October last year I have a considerable increase in afib episodes, from once a year to every two weeks now. 100 mg flecainide takes between 5 and 7 hours to get me back into sinus. My EP suggested that would probably have happened without flecainide
Re: Progression question
May 10, 2024 02:49PM
Quote
Edda
George, how long does it take for the flecainide to convert you? I am wondering whether flecainide doesn't work in some people. Since October last year I have a considerable increase in afib episodes, from once a year to every two weeks now. 100 mg flecainide takes between 5 and 7 hours to get me back into sinus. My EP suggested that would probably have happened without flecainide

I'll give my story in a minute. This is from the 2004 paper that described on-demand use of flecainide.

Quote

The mean time from the onset of symptoms to the ingestion of the drug was 36±93 minutes (median, 10). The drug was effective (i.e., palpitations were interrupted within six hours) in 534 of 569 arrhythmic episodes (94 percent; corrected efficacy, 93 percent; 95 percent confidence interval, 90 to 95). The mean time to the resolution of symptoms after the ingestion of the drug was 113±84 minutes (median, 98). Flecainide was effective in 239 of 254 episodes (94 percent), and propafenone in 295 of 315 (94 percent).

Sixteen arrhythmic episodes (3 percent) were interrupted after more than 6 hours (range, 390 to 890 minutes) without the patients' contacting the emergency room. Twenty-six episodes (5 percent) required emergency room intervention, 10 of which (2 percent) also required hospitalization. Of the total of 618 episodes of palpitations, 49 were not treated, either because the patient felt that the arrhythmic attack was mild or because the drug was unavailable, and 5 of these episodes (10 percent) required emergency room intervention. Thus, during the follow-up period, a total of 31 treated or untreated arrhythmic episodes (5 percent) resulted in emergency room visits, and 10 of these episodes required hospitalization. Of the 31 emergency room visits, 19 were due to episodes of atrial fibrillation that lasted for more than six hours, 1 to acceleration of the heart rate after drug ingestion, and 11 to anxiety. (Among the calls that were attributed to anxiety, seven involved a request for emergency room intervention even though the atrial fibrillation had lasted for less than six hours and was well tolerated and four involved a request for an electrocardiogram although palpitations had ceased.)

In my case (19.5 years of use), it has generally been 1-4 hours historically. A few shorter and some up to 9 hours more recently (in the last few years). However my first ever use was to convert a 2.5 month episode that started about 2 months after my first episode. It took 20 hours as did the next one about a month later. I've hypothesized that the next one was long because of "atrial stunning" was still extant from the 2.5 month episode. I literally felt euphoric for weeks after the 2.5 month episode converted and I didn't think I felt bad during it.

Other than the first two episodes, the longer conversions seem to be related to the afib converting to tachycardia, which may be flutter. I've hypothesized I need to convert from flutter to afib for the flec to work and convert me to NSR. There appears to be a couple of things that might bring on the tachy/flutter. One is I used to dose 300 mg flec (appropriate for those weighing more than 154 #'s (70 kg). A couple of years ago I randomly took flec that had been expired for 8 or so years. I realized what I'd done as I chew it and I could taste that it had oxidized somewhat. However it converted me in an hour and 40 minutes with no tachy. I then wondered if cutting the dose of "fresh" flec from 300 to 200 (or by 33%) would lead to the same result, and it did. When I first started taking flec in 2004, I was fit but heavy at 205#'s (6'), over time I'd dropped to around 170#s. I wondered if I'd been taking too much for my lower weight system. The other thing that may bring on the tachy is an excess of calcium (for me). When I am (inadvertently) taking in too much calcium, I have episodes with no discernable trigger. I also am prone to much more of the afib converting to tachy. I hypothesize that I must convert the tachy to afib for the flec to do its job and convert me to NSR. The most reliable way I've found is mild hypothermia. I submerge myself up to my neck in a tub of 50 deg F water for over 20 minutes. This doesn't cause shivering, but there is "afterdrop" when I get out and warm up by the fire. This is when I convert from tachy to afib. Then I'll convert to NSR (I will have had flec on board for hours prior). In the attached file are two charts. These are heart rate vs time. The first is an entire episode and the second is the last 20 minutes of the episode. You can see where the variability gets very low, compared to the afib. This is what I'm calling tachy/flutter. The last 20 minutes include part of the time in the water and then the conversion to afib followed by conversion to NSR.

I track all of this in real time, so I can see when I'm in tachy and in afib and also ask the question, "if I do X will it change my state?"

In summary, your EP may be correct and statistically I see why he'd say what he did. However, my experience is, if I'm having a long conversion, they usually include the tachy/flutter and if I make to effort to convert the flutter to afib, NSR usually follows relatively quickly.
Attachments:
open | download - Afib plus tachy:aflutter .pdf (162.6 KB)
Re: Progression question
May 11, 2024 10:30PM
Thank you George. Those times would be similar to mine. According to my watch (and my EP in case I send it to her) I am in afib all the time. But to describe my last episode: I woke up at 00:15, and took, like instructed by my EP, 25 mg metoprolol tartrate and half an hour later 100 mg flecainide. This time I also drank a glass of coconut water. Could’t go back to sleep, walked around and finally went to bed and fell asleep completely exhausted. That was at about 4 am. My heart rate was 163 at 00:13, 139 at 00:39, 145 at 00:49. From then on until I converted to NSR my heart rate fluctuated between 55 and 124. At 4:49 am I converted and the HR fell to 73.
So maybe I try to postpone the flecainide next time or not take it at all, especially since it seems to affect the strength of my heartbeat. I used to feel every ectopic beat, because I am quite skinny. During the last months my heartbeat is rather faint. Sometimes I can’t feel it at all, especially after an afib episode it takes several days until I can feel my heartbeat again. My pulse is fine, though.
I thought I might also try Steve Carr’s regimen. I am just wondering whether anyone can manage to eat between 500 and 1000 g of mushrooms a day
Re: Progression question
May 12, 2024 01:47PM
If you're talking about potassium, beet juice, coconut water, potatoes, peanuts, pistachios, all have high concentrations of K.
Re: Progression question
May 12, 2024 05:29PM
Let's not forget the king of potassium: kiwi fruit.
Re: Progression question
May 13, 2024 08:00PM
yes, he mentions potassium, but also glutathione and ergothioneine, and also a form of beta-glucan dietary fibre, which acts as a probiotic. This was on his blog March 2023. I am wondering whether it is still working. I mean, not having any afib for 10 years because of dietary changes sounds intriguing
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