It’s Official

So,

I’d kind of been holding out some faint glimmer of hope that the episode of a fib I had back in June was a fluke (holiday heart or something) but the results from my 14 day event monitor are in and I definitely have paroxysmal afib. Unfortunately, the monitor only takes samples for a specified window around when the patient hits the button or when it notices an event so I’m not sure exactly how long my episodes are lasting but if I base it on symptoms it’s 2-5 minutes. Sometimes even shorter but I’ve only had one long episode in June that was about 5 hours. I had a decent discussion with my local EP who does the largest number of afib ablations in his practice and we settled on starting with a medication approach of flec and dilt bid. His reasons were that some people do get some benefit from medications and based on the questions i was asking and the discussion we were having he felt like I probably wasn’t personally ready to take the ablation step (I think he’s right). At least if the meds don’t work and I do the ablation in a few months I can’t say that I didn’t try the medication route.

I know people on here have a lot of experience with all the different treatment options available and was wondering if anyone else has been on this combo before? How did it go? Anything in particular I should look out for? I’m not usually the type that wants to take the medication approach first. In general if there is a potential procedural “cure” I typically go for it. But the small bit significant risks of ablation make me think I may regret not at least trying the medication approach first.

I’ve been taking 600mg of magnesium glycinate and 4g of taurine (and also drinking 8oz of low sodium v8) for about 8 weeks now with no real changes in my disease process. I have an episode about once ever 5-12 days usually lasting less than 5 minutes. Flec pill in the pocket doesn’t make much sense as I’d probably not even get it down my esophagus before the episode ends at this point. Any thoughts?

Giving the flecainide and diltiazem a try is reasonable. With such short episodes my bet would be it will be fairly effective for you. If it is effective and has minimal side effects for you, the question becomes how long do you stay on it? There are people out there who've been controlling their afib with flecainide for years and they're perfectly happy sticking with that.

Another reasonable option is do nothing and see how it goes. The occasional 5-minute episode with minimal symptoms isn't going to do you any harm, and who knows, maybe another 5-hour episode won't happen again for a long time.

All in all I'd say you've got plenty of time to decide what to do so don't rush into anything.

Thanks Carey. The side effects of flecainide make me a little nervous. I know the chances of proarrhythmic side effects are very small (especially for someone with a structurally normal heart) but it’s still slightly concerning. I’m planning to do daily or at least every other day ECGs with my Apple Watch or Kardia 6L for a while just to keep an eye on things but I’m trying to just relax and hope the meds can at least space out some of the episodes. If I could get to once a month or less it would feel like really good progress.

The proarrhythmic effects are rare, but that's why your EP added the diltiazem. It's protective against the pro-arrhythmic effects, so you really don't need to worry about that if you go that route.

I understand your concerns. Being diagnosed with Afib is very discouraging for most people. I don't think those around us really understand.

I hope the medications work well for you.

It seems that a lot of people with Afib are prescribed flecainide, but I wasn't. What is the criteria for prescribing it?

Edited to add:

You say you are taking 4g of taurine.....is that the recommendation. I am only taking 1000 mg daily.



Edited 1 time(s). Last edit at 11/02/2019 07:16PM by katesshadow.

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pgrove1
Thanks Carey. The side effects of flecainide make me a little nervous. I know the chances of proarrhythmic side effects are very small (especially for someone with a structurally normal heart) but it’s still slightly concerning. I’m planning to do daily or at least every other day ECGs with my Apple Watch or Kardia 6L for a while just to keep an eye on things but I’m trying to just relax and hope the meds can at least space out some of the episodes. If I could get to once a month or less it would feel like really good progress.

I have taken flecainide and propranolol for a few years and it has been very effective for me. I take the lowest dose that works in order to minimize possible side effects. I took 50 mg of flecainide twice daily until last January when I had one breakthrough episode (I had the flu at the time and that probably contributed). Now I take 75 mg twice daily and no breakthroughs yet. Good luck with it.

Pgrove1:
I was successful on flecainide from 9-14 to 3-6-19...15 year run of minimal AF. Hopefully with your 5 minute episodes you should be ok.

I had a flecainide overdose (3 pills in 24 hours with 121 weight) in August, stopped flecainide and had an ablation with Dr. Natale on 9-19.

Regarding side effects-I had one annoying side effect of flecainide-it prevented me from sleeping. I would stay up until 5am begging myself to sleep. I had to take benzodiazepines for 15 years. Two days after stoping flecainide I started sleeping 7-8 hours a night like a baby. Not now because Multaq (prevention during my blanking period) gives me real bad GI and pain, and GERD that wakes me up.

Good luck on flecainide. It’s a black label drug so google herbal and supplements interactions. There are a few you should avoid. I found this site from the Mayo Clinic helpful:
[www.mayoclinic.org]

Not that you take Prilosec...but if you do, perhaps space it from your flecainide dose instead of taking both together. I would faint...many scalp wounds/stitches to document until I figured it out. Maybe I am an isolated case but it’s worth sharing if you start flecainide and get faintish with Prilosec.

pgrove, how much flec are you taking? I take 50 mg only at b'time. So far so good.

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susan.d
Pgrove1:
I was successful on flecainide from 9-14 to 3-6-19...15 year run of minimal AF. Hopefully with your 5 minute episodes you should be ok.

I had a flecainide overdose (3 pills in 24 hours with 121 weight) in August, stopped flecainide and had an ablation with Dr. Natale on 9-19.
.

When you say that you took 3 pills in 24 hours, how many mg were the pills—50? 100?

100mg three times a day (300mg total in 24 hours) . I was on two 100mg a day for 15 years and a former EP told me to increase my dose. I ended up in icu.

One of the important points in the most recent comprehensive evaluation of AF burden is that there is no evidence of increased stroke risk for episodes lasting less than 5 to 6 minutes Circulation 2018. Unless your sub 5 minute episodes every 5 - 12 days are extremely symptomatic, there is little evidence to support antiarrhymthmic drugs or cardiac ablation. I would suggest getting a second opinion from a non-local EP.

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katesshadow
It seems that a lot of people with Afib are prescribed flecainide, but I wasn't. What is the criteria for prescribing it?

There are criteria for not taking it but taking it is mostly just a judgement call on the EP's part, and it's pretty common to try more than just one. There are only a handful of antiarrhythmic drugs to choose from. Some come with hefty side effects (amiodarone), some require a hospital stay to initiate them (Tikosyn), and some are expensive (Multaq, Tikosyn). Flecainide has none of those drawbacks and it's usually effective, so it's a common choice, but it's not the only choice so it's not really surprising you were never prescribed it.

With a structurally normal heart Flec with Diltiazem is a good call by your EP until you decide to go the ablation route. I’ve read about plenty of folks for whom Flec has kept AF at bay for 20+ years with no adverse issues. That said, we’re all unique experiments of one and Flec won’t agree with everyone side-effect-profile-wise. I’d also add in my opinion Flec is deffo the way to go for vagal (evening/night-time/at rest AF) rather than adrenergic (daytime upon exertion AF).

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Carey

It seems that a lot of people with Afib are prescribed flecainide, but I wasn't. What is the criteria for prescribing it?


There are criteria for not taking it but taking it is mostly just a judgement call on the EP's part, and it's pretty common to try more than just one. There are only a handful of antiarrhythmic drugs to choose from. Some come with hefty side effects (amiodarone), some require a hospital stay to initiate them (Tikosyn), and some are expensive (Multaq, Tikosyn). Flecainide has none of those drawbacks and it's usually effective, so it's a common choice, but it's not the only choice so it's not really surprising you were never prescribed it.

I don't think I need it. I have only had one documented episode that lasted about 8-9 hours and self-terminated in November 2018. I know I've had ectopics and I guess it's possible that I could have had some Afib for a few minutes since then that I may not have been aware of (although I am super sensitive (too much so) to my heart beat. But, like I've mentioned before, the ER and follow-up cardiologist didn't give much attn. to my Afib.....like it wasn't even worth treating. She (the cardiologist) prescribed drugs for my BP - which was high - and one just happened to be a beta blocker, which is also prescribed for Afib.

An ER doc wouldn't pay much attention to afib because it's not going to kill you. ER docs don't do follow-up care or often even give referrals. A regular cardiologist is also likely to pay little attention to afib, especially if it was just a single episode. If you have another episode, you need to find a electrophysiologist (EP). You probably should have been given an event monitor to wear for a month to make sure you don't have any silent afib. You probably don't since you said you were highly symptomatic so would know it, but an EP likely would have done that to make sure.

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Carey
An ER doc wouldn't pay much attention to afib because it's not going to kill you. ER docs don't do follow-up care or often even give referrals. A regular cardiologist is also likely to pay little attention to afib, especially if it was just a single episode. If you have another episode, you need to find a electrophysiologist (EP). You probably should have been given an event monitor to wear for a month to make sure you don't have any silent afib. You probably don't since you said you were highly symptomatic so would know it, but an EP likely would have done that to make sure.

At my follow up after the ER visit, the cardiologist added Eliquis. I found an EP and at my visit with him in February, he told me to stop the Eliquis and start it agin if and when I had another episode. He based that on my Chads score of 1 (HBP).

Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?

Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?


Because doctors don't know what causes AF and when it stops they don't know why-----they just plain havn't got enough knowledge.

Liz

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Elizabeth
Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?

Liz

There is a lot of research for race horses with AF. I guess they are more financially valued.

Pacemakers for race horses with AF
[thehorse.com]

[www.vet.cornell.edu]

Susan:

The pacemakers were implanted in the horses to induce AF.

Heavy exercise has induced AF, there has been a few posters here that have cut back on their exercise because of it causing their AF. Hopefully we will learn a lot more in the next few years.

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Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?

In the ER the only attention you are likely to get is something to convert you. The ER doesn’t provide continuous care—itheir job is just to get you out of the emergency and send you home. For actual “care” for Afib, you will need an EP and EPs do take it seriously—by making a plan with you to keep it from recurring.



Edited 1 time(s). Last edit at 11/03/2019 09:05PM by Daisy.

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katesshadow
Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?

The two big risks for afib for morbidity and mortality are stroke and cardiomyopathy (heart failure). For someone with a one off event lasting 9 hours and a CHADs score of 1, the risks are low. Cardiomyopathy can stem from an elevated (>100 BPM) rate in afib for an extended (days) length of time. The BB prescribed is also used a rate control drug.

When I first joined here over 15 years ago, there was a saying, "afib is the hemorrhoids of cardiology."

As to ER treatment, it is interesting that I've been told by a number of ER docs they use IV magnesium sulfate (Epsom salts) to convert afib, however magnesium is typically not prescribed by a cardio or EP for ongoing care. In my case, it is a cornerstone of my now 15 year plan to keep afib in remission. I did meet one cardio who said he studied it as a fellow.

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Elizabeth
Heavy exercise has induced AF, there has been a few posters here that have cut back on their exercise because of it causing their AF. .

I would be one of those. It is another cornerstone of my plan. My question to myself is always how to remain fit, yet not push the limit. My limit has been subjective all these years. One of my guides is to always breathe through my nose, if I have to open my mouth, it is too hard. I can even to short duration, high intensity with my mouth closed (like HIIT Tabatas). I hope to write more about objective ways to figure out how to stay below a threshold at some point.

George

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GeorgeN

Heavy exercise has induced AF, there has been a few posters here that have cut back on their exercise because of it causing their AF. .

I would be one of those. It is another cornerstone of my plan. My question to myself is always how to remain fit, yet not push the limit. My limit has been subjective all these years. One of my guides is to always breathe through my nose, if I have to open my mouth, it is too hard. I can even to short duration, high intensity with my mouth closed (like HIIT Tabatas). I hope to write more about objective ways to figure out how to stay below a threshold at some point.

George

I have the same issue. Following my first ablation back in 2009 I returned to my regular exercise routine and some bike racing. I have little doubt that that is at led me back to the EP lab in 2018. I also speculate that pushing the limits either initiated or enhanced the progression of my afib triggers.

My quandary now is where do I go from here with my exercise regiment. I'm severely out of shape since the past 2 years I have basically done little to nothing pertaining to cardio and lifting. I have been back to the gym the past month and have a few cycling outings under my belt but I am apprehensive about overexerting myself. Especially since I had a breakthrough event right at my 3 month post ablation mark following my ablation back in July. This followed a few days of outdoor work and a couple bike rides. I'm guessing I was a little dehydrated as temps over those couple days had climbed quite a bit.

I have been using breathing through my nose as a governor for exercise and keeping my HR below 140 bpm. I thought about HIT but that was always a trigger for me in the past, so I am leery of it.

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katesshadow
Why is Afib given so little attention? Even if it's not going to kill you, it's considered serious, isn't it?

Actually, in practice, no. Most doctors don't consider afib serious. They consider it a manageable disease that won't kill you as long as you take some fairly inexpensive meds (metoprolol + warfarin). You'll still be able to continue leading a normal life, so what's the big deal. When they compare that to their cancer patients and heart attack patients and so forth, afib looks pretty tame. Do I think they're really, really wrong? You betcha.

You'll find that attitude mostly among doctors who aren't EPs, which includes a lot of general cardiologists. But you'll even find it among some EPs, which I find disturbing. They should know better. There's a widespread failure among doctors of all specialties to appreciate the impact on quality of life that afib has. I think that's improving, especially among EPs, but it's a slow process.

Incidentally, I had a followup with my local EP recently and sort of got to talking about this. I told him I thought that to pass the cardiology board exams you should have to go into an EP lab, be catheterized, have afib induced, and then be sent home with a prescription for metoprolol and Eliquis and told good luck. He laughed and agreed, but he's one of the ones who gets it, which is why I maintain a relationship with him.

Thanks for all the responses. Honestly, it's hard not to be super depressed about this. I know it probably sounds like whining but at 34 and having episodes every 2 weeks (even if they are only short) makes me super apprehensive about my long term prospects. I've done about all I can cutting out possible triggers and I was never an extreme exerciser. The only thing I haven't been tested for is sleep apnea (scheduled with sleep medicine doctor in december). I'm praying almost constantly that the medications will give me some relief. I'm just not sure what my life is going to look like for the next 30 years. Am I looking at decreased physical capacity, decreased ability to work, decreased functional capacity to play with my kids and help my wife around the house? Hard not to feel really pessimistic about everything at the moment.

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Joe
pgrove, how much flec are you taking? I take 50 mg only at b'time. So far so good.

Hey Joe,

He has prescribed 50mg BID at this point. I haven't started taking them yet as the pharmacy my insurance asks me to use is mail order and the meds probably won't get here until Wednesday. How long have you been on your 50mg at bedtime regimen? Has it been effective for you?

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pgrove1
Thanks for all the responses. Honestly, it's hard not to be super depressed about this. I know it probably sounds like whining but at 34 and having episodes every 2 weeks (even if they are only short) makes me super apprehensive about my long term prospects. I've done about all I can cutting out possible triggers and I was never an extreme exerciser. The only thing I haven't been tested for is sleep apnea (scheduled with sleep medicine doctor in december). I'm praying almost constantly that the medications will give me some relief. I'm just not sure what my life is going to look like for the next 30 years. Am I looking at decreased physical capacity, decreased ability to work, decreased functional capacity to play with my kids and help my wife around the house? Hard not to feel really pessimistic about everything at the moment.

If I remember correctly (I've read a lot here), such kind of vagal afib, with short episodes stopping spontaneously, does not usually evolves towards more afib...

I was lazy and didn't use my CPAP machine for 3 months and my AF returned so often to the point that I had to have an ablation for sanity because I am symptomatic. You should be tested for sleep apnea to rule it out. You can have a home test or a lab test where you sleep at their facility. I prefer my own bed vs a freezing room with an uncomfortable bed. I think the lab test is more detailed in that they stick electrodes on your head and really hook you up to equipment. If during the first half the tech notices sleep apnea, then he wakes you up and you will sleep with a mask. I had two lab tests and two home tests because I had it done the day I returned from overseas and was jet lag and was awake the entire test #1...so try to schedule when you are not returning from a flight or stressed out.

in the meantime try to not sleep on your back, as the tech said more sleep apnea occurs in this position.

Ha! Carey,

That’s a good suggestion for budding EPs ... Obviously, though, I suspect there will not be many EPs taking you up on that advice!

One of the other still often overlooked issues that could very well be relevant in this equation, is the increased risk of early onset dementia (meaning onset dementia/Alzheimers before age 70) from poorly addressed long-term AFIB.

While we are still lacking the needed long term RCTs (I understand that several are underway) to make a defining connection between AFIB and dementia, the wealth of solid non-randomized prospective and retrospective studies plus meta-analysis, give a good degree of confidence that the connection between potential increased risk of early onset dementia and long term active AFIB is strong.

The final verdict on that question remains to be determined, but a lot of very smart EPs feel strongly that the combined evidence to-date, plus their many years of anecdotal and clinical experience with AFIB patients, also with early onset dementia, favors AFIB patients erring on the side of caution and protection while awaiting more definitive conclusive answers,

Shannon

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pgrove1

pgrove, how much flec are you taking? I take 50 mg only at b'time. So far so good.

Hey Joe,

He has prescribed 50mg BID at this point. I haven't started taking them yet as the pharmacy my insurance asks me to use is mail order and the meds probably won't get here until Wednesday. How long have you been on your 50mg at bedtime regimen? Has it been effective for you?

I sympathize with your stress but look at it more optimistically as the research will offer much improved treatment in the future. Easy for me to say at 69yo and having had the first episode in 2015(about 4 month permanent af and a 4/5 week one last year), i know.
Last one converted with 50 mg Flec after a few days BID but for the last 8 or so months i've only taken 50mg at night.
If you have the possibility i'd make sure all the other bio markers are optimal looking at diet, life style and perhaps supplements, as so many here have found helpful, that is right for your genotype .
Best wishes, Joe

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pgrove1
Thanks for all the responses. Honestly, it's hard not to be super depressed about this. I know it probably sounds like whining but at 34 and having episodes every 2 weeks (even if they are only short) makes me super apprehensive about my long term prospects. I've done about all I can cutting out possible triggers and I was never an extreme exerciser. The only thing I haven't been tested for is sleep apnea (scheduled with sleep medicine doctor in december). I'm praying almost constantly that the medications will give me some relief. I'm just not sure what my life is going to look like for the next 30 years. Am I looking at decreased physical capacity, decreased ability to work, decreased functional capacity to play with my kids and help my wife around the house? Hard not to feel really pessimistic about everything at the moment.

I sympathize with you. Felt exactly the same way after I was diagnosed last year. Had my episode on 11/27/18. We had a Disneyworld trip in December that I almost ruined because I was so stressed. First night there, had to walk out of the restaurant and *almost* went home because of my panic. I did my best to calm down so I wouldn't ruin the trip for my 2 sons. Ended up having a good time (although still overshadowed by this stupid Afib.)

Anyway....a positive thing has been that I went over all the test results with a fine tooth comb. These were the tests they took after I was admitted in the ER (to make sure there was nothing else going on with my heart). Obviously, you can get too bogged down, but one thing I did notice was my calcium level was low. I mentioned it here and one poster picked up on it and said I should also have my Vitamin D levels tested. He had found that by optimizing his Vit D, cutting DOWN on calcium, he eliminated his Afib episodes.

My Vit. D level was 11! That's super low. I started supplementing and at last check it was 48.

My supplement routine is as follows:

Magnesium Glycinate 480 mg.
Taurine 1000 mg.
B12 1000 mg.
Vit. D3 - 5000 iu
MK7 90 mcg


I also take a beta blocker and calcium blocker (these were prescribed for my BP, which may have caused the Afib.....certainly doesn't help it ).

Although I have learned to handle the Afib diagnosis a little better, it's still on my mind pretty much all the time. I look around and envy those who don't have it . But, really, it is treatable and everybody has *something* I guess. I also keep telling myself that the EP I saw in February told me I have a "fantastic heart." (other than the Afib ))

And, as someone above mentioned, treatment options are improving.

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pgrove1
I know it probably sounds like whining but at 34 and having episodes every 2 weeks (even if they are only short) makes me super apprehensive about my long term prospects.

It should do the opposite. You have paroxysmal AF, not long-standing persistent, and you are very young. Even a greenhorn EP can't kill you (well, he/she'd have to try really hard). Time is totally on your side. You can explore medications and also ablation procedures. You use the time and relative good health to your advantage to find the best possible caregivers and practitioners that you can. You'll come through this just fine. Even if AF returns at some later point in your life, say age 50, the technology and knowledge will be so advanced by then I can't imagine any person who desires permanent freedom from it won't be able to find it. It's just not going to happen.

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wolfpack

I know it probably sounds like whining but at 34 and having episodes every 2 weeks (even if they are only short) makes me super apprehensive about my long term prospects.

It should do the opposite. You have paroxysmal AF, not long-standing persistent, and you are very young. Even a greenhorn EP can't kill you (well, he/she'd have to try really hard). Time is totally on your side. You can explore medications and also ablation procedures. You use the time and relative good health to your advantage to find the best possible caregivers and practitioners that you can. You'll come through this just fine. Even if AF returns at some later point in your life, say age 50, the technology and knowledge will be so advanced by then I can't imagine any person who desires permanent freedom from it won't be able to find it. It's just not going to happen.

Thanks Wolfpack. Honestly, encouragement and hope is what I feel like I need more than anything. Most of my life, I've been pretty optimistic about everything. I've spiraled a bit with this diagnosis and just need some help being lifted out of the gloom. Your message has certainly helped in that respect. I've started the medication route and I'm taking the diltiazem only right now for a few days just so that I can distinguish the side effects (if I end up with any) between it and flecainide. The plan is to start the flecainide over the weekend when I'm off from work and can pay attention to how I'm feeling a little better. Here's to your prediction that I find some temporary or permanent relief. And also to your prediction of having blanket cures for afib in the next 15 years.

pgrove1
I was very successful with my 15 years on flecainide. first 5 years with no AF and then an AF from throwing up and dehydration (3 weeks in hospital for my GI) then nsr for 3 years until throwing up again..

You should be fine. Age is in your favor and as was remarked, by the time you are 50 or older, treatment for AF will be improved.

Good luck with flecainide! Just watch your herbals and supplements for interactions if you want to cross your T’s