Newly Diagnosed

Hello all,

This forum looks like a great source of information. I've used similar boards in the past for Ortho issues and joint surgeries, etc.

Anyway, I was officially diagnosed yesterday with AFib in my PCP's office via an ECG.

Over the last maybe 10 years, certainly noticeable over the last 5, I would have what I believed to be tachycardia episodes that would typically last 24-48 hours (even less at times) and then resolve on its own. I would notice this at the gym when the machine HR monitor would show erratic 150 - 190 BPM, when normal for that level of exertion would be 110 - 150. The incidences would occur maybe a handful of times per year and was I thought to be triggered by some drinks the prior night. It only happened rarely so it was hard to pinpoint. I bought a fitbit years ago and BP monitor to keep check on things and outside of these rare occurrences, things were fine.

This past Sunday morning I woke up with that same racing heart feeling and thought here we go again. This time, unfortunately, it has not let up. So it's been 5 days and counting. I chose to call my PCP on Tuesday and had a phone call. On Wed I went to see him for an exam because it didn't let up. He determined Afib and prescribed me Eliquis 5mg 2x and Metoprolol ER Succinate 50mg 1x.

At this point, the rate reducer, at least at the gym is not lowering the HR. He said this may take a bit to kick in. I'd like to get other's thoughts on my best route going forward. I know at least in the past, my events would probably be considered paroxysmal. I'm concerned now on day 5 that it's behaving more like persistent Afib.

I'm looking into EPs in the Boston area. If there are any recommendations I would appreciate it.

Should I be on a rhythm med at this juncture?

My details are 58yo male, active, should lose about 20lbs, cholesterol controlled with meds. No other illnesses that I'm aware of.

Thanks for any input. It's all so overwhelming at this point when I was fine at the gym last Sat morning....

Bob

Hi Bob, welcome to the forum. Sorry you found the need to seek us out.

Your story is similar to others here. But fortunately your PCP took the right initial steps so you're out of danger now from strokes. It sounds like you've done your homework and know the basics of dealing with AF, so you know the next steps need to involve an EP. I would recommend Dr. Mansour at Mass General. His credentials speak for themselves and I know patients of his who have nothing but praise for him.

You say the metoprolol isn't really controlling your rate at the gym. So what's your typical resting heart rate at home and what is it while working out at the gym? And when it's high, how long does that last?

The question of a rhythm med needs to wait for an EP to get involved, but it's a likely option, at least in the short term. Ablation is now considered first line treatment, but antiarrhythmic drugs still have their place. They tend to be fiddly drugs that come with a mixed bag of side effects. Some people find one that works great for them and spend years free of AF with no side effects, while others go from one to another with limited success and lots of side effects. You just won't know until you try.

And of course there are things you can do on your own that might help reduce your AF. The site is full of discussions of stuff like that, so look around.

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Carey
Hi Bob, welcome to the forum. Sorry you found the need to seek us out.

Your story is similar to others here. But fortunately your PCP took the right initial steps so you're out of danger now from strokes. It sounds like you've done your homework and know the basics of dealing with AF, so you know the next steps need to involve an EP. I would recommend Dr. Mansour at Mass General. His credentials speak for themselves and I know patients of his who have nothing but praise for him.

You say the metoprolol isn't really controlling your rate at the gym. So what's your typical resting heart rate at home and what is it while working out at the gym? And when it's high, how long does that last?

The question of a rhythm med needs to wait for an EP to get involved, but it's a likely option, at least in the short term. Ablation is now considered first line treatment, but antiarrhythmic drugs still have their place. They tend to be fiddly drugs that come with a mixed bag of side effects. Some people find one that works great for them and spend years free of AF with no side effects, while others go from one to another with limited success and lots of side effects. You just won't know until you try.

And of course there are things you can do on your own that might help reduce your AF. The site is full of discussions of stuff like that, so look around.

Thank you for the reply and the recommendation of Dr Mansour. My HR is erratic so it's hard to give a set number. I think the average on my ECG the other day was 123, but that was prior to Metoprolol. If I check it now 3 times in a row it will provide 3 differing numbers maybe between 70-110. At the gym it's the same except it starts at 145 and swings up 40 points and back down.

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BobsBeat
My HR is erratic so it's hard to give a set number. I think the average on my ECG the other day was 123, but that was prior to Metoprolol. If I check it now 3 times in a row it will provide 3 differing numbers maybe between 70-110. At the gym it's the same except it starts at 145 and swings up 40 points and back down.

Yes, of course your heart rate is erratic, it is how afib presents. You'd like a device that averages a bit. I've never used metoprolol or any rate control med, but exertion while in afib has a HR much higher. I've had afib 17 years. Chronic fitness was my path. First ever episode, I threw a heart rate monitor on and walked down & up my basement stairs and average HR went to 145. As I'd been training for a race that gains 7800' over 13 miles and tops out at 14,100', I would have expected a heart rate going up the stairs of 80 or so.

What you'd like, when you are not exercising, is to have a sub 100 heart rate average while in afib.

The book Haywire Heart, in this thread, is good background for afib and exercise. In my posts in the thread, I put forth my hypothesis that there is a "sweet spot" for intensity, with regards to afib.

At this point, they likely won't cardovert you (electrically or chemically) until you've been on Eliquis for 3? weeks (been a long time & I don't recall exactly) or have a TEE before the procedure. You could still convert on your own, but less likely. Then the question is how to keep in rhythm after the cardioversion. Taking a rhythm med is one possibility, Using a rhythm med on demand (PIP or "pill in pocket") to convert yourself is another. This is a discussion for the EP.

Thank you George.

Are you saying it's fairly standard (to rule out blood clots) to keep someone on blood thinners for 3 weeks or perform the TEE prior to cardioversion (be it pills or procedure)? It will probably take some time to get lined up with an EP in town anyway. I just didn't know if this situation was urgent. I want to make sure I'm doing all I can in a timely fashion.

Can you describe how you "converted" after being in Afib for 2 1/2 months many years ago?

Thanks

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GeorgeN

You could still convert on your own, but less likely. Then the question is how to keep in rhythm after the cardioversion. Taking a rhythm med is one possibility, Using a rhythm med on demand (PIP or "pill in pocket") to convert yourself is another. This is a discussion for the EP.

If you try Flecainide pill in the pocket PIP approach, there are maximum dosing based on weight. If you weigh less than 154 pounds, the maximum you can take in a 24 hour period is 200mg. However if you weigh more than 154 pounds the maximum dose you can take in a 24 hour period is 300mg. It’s dangerous if you take more and could end up in the ICU....or risk death because the drug has a black box label.

I can’t find my post about the guy who was suggested the PIP. He took 300mg flecainide, then repeated it and repeated within 24 hours and if I recalled took over 700-800mg. He was in bad shape.

I always post a warning about the maximum dose within a 24 hr period as a good deed in trying to save a life after the PIP is suggested. I won’t always be around and hope whoever suggests it in the future mentions maximum dosing within a 24 hour period. I was unaware of the dosing and weighed 121 pounds and took 300mg and ended up 3 days in icu with a 24 hr. You don’t want to have that experience. In the meantime I’ll repost from GeorgeN the following. If George or any other clever search experienced person is lucky to find the post about the guy who didn’t convert and continued to take more flecainide, he too will be doing a good deed by reposting it when PIP is suggested in this forum or in the case of the guy whose EP (or any EP in general) who wasn’t responsible in telling his patients dosing instructions or the risks of overdosing.

[www.afibbers.org]

You should get a simple flecainide serum blood test to see what your levels are based on your liver enzymes and other drugs you take that can affect the absorption of flecainide. It’s a timed test drawn 11 hours after your last dose.
[www.afibbers.org]
[www.afibbers.org]



Edited 2 time(s). Last edit at 05/07/2021 11:26AM by susan.d.

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BobsBeat
Are you saying it's fairly standard (to rule out blood clots) to keep someone on blood thinners for 3 weeks or perform the TEE prior to cardioversion (be it pills or procedure)? It will probably take some time to get lined up with an EP in town anyway. I just didn't know if this situation was urgent. I want to make sure I'm doing all I can in a timely fashion.

The only urgency is you have is (in my opinion) you'd like to be out of rhythm as little as possible to minimize electrical and physical remodeling that make it easier to go into and stay in afib. Yes, it is standard procedure to keep someone on blood thinners for 3 weeks prior to a cardioversion. Alternatively a TEE immediately preceding a cardioversion can be used.

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Can you describe how you "converted" after being in Afib for 2 1/2 months many years ago?

300 mg flecainide (I was well north of 154 #'s). That first and the next conversion with flec took 20 hours. Subsequently it has ranged from 25 minutes to 6 hours with a median of around an hour or hour and a half.

The other part of the story is I detrained, limiting longer duration exercise to Zone 2, with some infrequent HIIT. I also worked on my electrolytes, consuming magnesium to near bowel tolerance (consult a doc if you have sub standard kidney function), 2 tsp of potassium citrate (4 g potassium) in a liter of water consumed over the day- DIY timed release (same warning about kidney function) and 1/2 tsp (2g) taurine powder. I also keep my insulin/glucose metabolic system in stellar condition. Lastly, I minimize calcium intake (no dairy) and limit ot around 500 mg/day. This is my formula, which may not work for others.

When my electrolytes are out of balance, triggers are random, could be anything or nothing. When my electrolytes are in balance. My trigger is primarily when I violate my own Zone 2 prescription. My exercise trigger is the product of intensity times duration. My time between episodes has ranged from 1 day to 2+ years. In general, when I have everything titrated pretty well, I have 1 or two episodes/year.

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susan.d
If you try Flecainide pill in the pocket PIP approach, there are maximum dosing based on weight. If you weigh less than 154 pounds, the maximum you can take in a 24 hour period is 200mg. However if you weigh more than 154 pounds the maximum dose you can take in a 24 hour period is 300mg. It’s dangerous if you take more and could end up in the ICU....or risk death because the drug has a black box label.

Yes, from the PIP link I posted: "The dose of flecainide was 300 mg if the patient weighed 70 kg or more and was 200 mg otherwise; the dose of propafenone was 600 mg if the patient weighed 70 kg or more and was 450 mg otherwise. "

I saw the link George, thanks but it isn’t black and white to find and could easily be missed if someone skims the article, imho. That’s why I post the < 200mg if under 154 pounds. I’m still searching fir the link I posted about the guy who went to his ep who told him to take OIP without instructions of not exceed the dose in a 24 hr period so he took flecainide many times. That lack of instructions from the EP may not be isolated and people should know.

I agree with the others advice, and after reading this post, I suggest the following to focus on:

1) Get an appt with an EP Dr. asap.
2) Determine your average heart rate at rest and just during normal daily routine (non-exercise). If it's over 90-100 range, your will want to bring this down, some of us have have success adding another drug called a calcium channel blocker like Diltiazem in addition to the Metropolol. Your PCP can help with this until you get in to see an EP.

Between the 4 people who have responded to this post so far, there is probably around 60-70 years total experience dealing with AFIB, and although not Dr's, we have spent much time researching this condition.

Thank you all for the replies.

After a lot of due diligence, I managed to get an appointment with an EP from the AFib Electrophysiology center at MGH in Boston for this Tuesday 5/11. Hopefully I will leave with an immediate, short term, long term plan in place.

I will bring up the immediate Average HR need to be lower. I need some type of home monitor to show ranges as my BP monitor does not.

I wonder if I called 911 or went to the ER a few days back if they would have reset my rhythm, although I would not have been on a thinner at that point.

Regarding the Flec weight issue, I'm currently at 220lbs but targeting to lose 20 given my profile. Thank you for the heads up Susan!

I appreciate the many years of experience in these responses.

Bob



Edited 1 time(s). Last edit at 05/08/2021 10:14AM by BobsBeat.

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BobsBeat
I need some type of home monitor to show ranges as my BP monitor does not.

I wonder if I called 911 or went to the ER a few days back if they would have reset my rhythm, although I would not have been on a thinner at that point.

I recommend the Kardia. You can read about it and buy it here. There's also the Apple Watch, but that's a lot more money and is stricter about what it will diagnose (it's specifically NOT for people with afib). As for the Kardia, I don't think the 6L is worth the added cost for most people. Just go for the basic model.

I doubt an ER would have cardioverted you. With no anticoagulants on board they would have had to do a TEE first, and you weren't in any immediate danger so they most likely would have just put you on a diltiazem drip and left you to lay there for hours until it converted on its own. You can accomplish the same thing in the comfort of your own home.

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Carey

I doubt an ER would have cardioverted you. With no anticoagulants on board they would have had to do a TEE first, and you weren't in any immediate danger so they most likely would have just put you on a diltiazem drip and left you to lay there for hours until it converted on its own. You can accomplish the same thing in the comfort of your own home.

Thanks Carey. I guess I'm panicked because what I've read states that paroxysmal afib needs to be converted within 7 days, otherwise it's listed as persistent afib. I'm on day 7 now. All other infrequent times in the past have been short 24 hr reversals on its own. How can a person possibly get converted within 7 days when they don't even know what's going on, let alone who to see, blood thinner and TEE issues, etc.? The outcome statistics for those with persistent seem more dire than paroxysmal.

Hi Bob....getting cardioverted could help you tempor. but remember its just like getting a picture taken of you......its just that moment in time...in other words you MIGHT get back to nsr after the paddle shock but that will likely only last a short period of time who knows you fill in the blanks of how long
everyone is diff....your main concern is to get on the road to an Ablation like you are on now because the longer your in it the harder is to get out of it + the heart changes that occur in long standing afib and that goes esp. when being cardioverted. My guess it would be hours to few days of nsr IF its successful at all....all of mine were unsuc. + i was only in for between 24-48 hours...3 times worth of the paddle treatment....focus on the quickest way to your EP's Ablation room where you can get long lasting relief then having to jump through all the hoops of a cardioversion with only temp. relief....IF THAT.



Edited 1 time(s). Last edit at 05/08/2021 12:01PM by vanlith.

My case is not as grim. 5/6 years ago i had permanent AF. After 2/3 months i had a cardioversion. The Cardiologist gave me a nocebo saying that it probably won't work. Well, it worked for one hour of NS.
I insisted on another cardioversion which i got a few weeks later (4/6 - don't remember exactly) and it held for about 2 years without any noticed episodes. I had a few since but converted with Flec.

After my initial long AF i did see an alternative as well and on recommendation i drank Hawthorn Berry tea with a few other commonly 'heart' tea herbs. I figured if it doesn't help it won't hurt. Blood glucose levels were also on my attention list and modified diet accordingly.
No one really knows, the impression i got from consulting with one highly regarded cardiologist and two EPs. It is still a whack-a-mole game?

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Joe
After my initial long AF i did see an alternative as well and on recommendation i drank Hawthorn Berry tea with a few other commonly 'heart' tea herbs. I figured if it doesn't help it won't hurt. Blood glucose levels were also on my attention list and modified diet accordingly.
No one really knows, the impression i got from consulting with one highly regarded cardiologist and two EPs. It is still a whack-a-mole game?

Im sorry...I have to jump in here because it’s Flecainide related. There are a lot of supplements that raises the flecainide serum levels. Hawthorn is one of them. Trust me you don’t want a flecainide overdose if you drink too much tea /an or take milk thistle or echinacea or other supplements or take an extra flecainide to try to convert. You should check drug interactions. Mayo has a great list as well as other reliable sites.

I wouldn’t rely on this site as medical proof but it’s short to the point on what I just mentioned to motivate you to start educating yourself and research since you are taking Flecainide, a potential dangerous drug if you abuse it. It has a black box label.
[www.rxlist.com]

For those unfamiliar with a black box label drug:
[health.clevelandclinic.org]

" I need some type of home monitor to show ranges as my BP monitor does not."

You can always count your pulse with a finger on your wrist in 15-20 second intervals.
A pulse oximeter also is an option.

[www.amazon.com]

Anyway, the EP doctor will give an EKG, before you see him/her, and use that as the main basis for determining your HR.
I would take any other EKG read-outs from your PCP or the ER to your EP visit.



Edited 1 time(s). Last edit at 05/09/2021 09:11AM by The Anti-Fib.

Great advise Susan!
I was not on Flec when i took herbal teas, not that i knew at the time only low dose BBs and Eliquis.
Even a few weeks ago when i took Robotussin only once late afternoon it put me into AF (perhaps fast irregular HR initially) which lasted until the next day when i took 50 mg Flec which did not convert so i took another 50 mg a few hours later and luckily it did convert. Maybe it was just the chemicals from the cough med wearing off?

Hey BobsBeat

As Carey thoughtfully put it, sorry you have had to find this forum. I dont have anything to add to the comments already posted but just to say that all these people have been a great source of support to me on my journey, which is hugely appreciated -. so you are in the right place. I wish you all the very best with your journey and your health.