Full blown afib episode...I have questions

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jpeters
Anyway, Digoxin works very well restoring heart function quickly.

You seem determined to confuse heart failure and afib. Yes, digoxin treats heart failure. That's not news to anyone since the 1930s. However, what it does for people with afib who don't have heart failure is makes them die.

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mwcf
Different folks = different views. Do your own research and - with your EP's input - make your own choice. (FWIW IMO for me as a vagal AFr = no digoxin thanks.) Personally speaking I'm good with info and opinions provided by Hans, Shannon and Carey (and Jackie, George N, wolfpack and some others here).

Not a bad idea to avoid group think. IMHO responses like

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You need an EP. Digoxin is an inappropriate drug for afib.

Your cardiologist is woefully out of date with his training.

are completely inappropriate for non-professionals

I'm fine with making your own choices, and have learned a lot from the opinions on this board. I've also benefited from digoxin as prescribed by a highly skilled professional.

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It’s a her, she is young and works for a very large HMO. She is board certified In both cardiovascular disease and internal medicine. I cannot imagine she is prescribing me something that will kill me.

Edited 1 time(s). Last edit at 08/14/2018 10:52AM by jpeters.

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mwcf
BTW; has anyone here ever had 1:1 AFlutter with Flecainide? I'm aware a few (incl. Shannon and Carey) have had 1:1 AFlutter but so far as I'm aware that wasn't due to Flecainide.

I know of one person on another forum it happened to. It is a rare complication.

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The Anti-Fib





Lone Atrial Fibrillation

No such thing

Says who? Yes many Doctors stopped using the term 10-15 years ago, but we still know what the term refers to. It makes the Treatment Protocols simpler for the Doctors and Nurses if there are not multiple categories of AFIB to treat.

Check with Carey and Shannon on that.

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jpeters
are completely inappropriate for non-professionals

I'm sorry but I don't share your unquestioning worship of doctors. I've seen doctors kill patients through ignorance and lack of up-to-date training. Seriously, you've never read or heard stories of medical incompetence? You haven't seen the stats? I've seen it first hand. I've even seen doctors kill patients. In fact, I've literally rescued patients from doctors.

Patients who educate themselves and question their doctors are patients who survive and get better.

As for the digoxin that helped you, one more time.... Yes, you had heart failure and that's why digoxin was appropriate for you. It is, however, no longer considered appropriate for the treatment of afib in people who don't have heart failure. Feel free to do some reading of the literature if you doubt that.

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Carey

are completely inappropriate for non-professionals


I'm sorry but I don't share your unquestioning worship of doctors. I've seen doctors kill patients through ignorance and lack of up-to-date training. Seriously, you've never read or heard stories of medical incompetence? You haven't seen the stats? I've seen it first hand. I've even seen doctors kill patients. In fact, I've literally rescued patients from doctors.

Patients who educate themselves and question their doctors are patients who survive and get better.

As for the digoxin that helped you, one more time.... Yes, you had heart failure and that's why digoxin was appropriate for you. It is, however, no longer considered appropriate for the treatment of afib in people who don't have heart failure. Feel free to do some reading of the literature if you doubt that.

Patients who educate themselves and question their doctors are patients who survive and get better.

Well said, Carey.

Back in the days when I trusted that doctors knew everything, I was on the receiving end of injuries and damage by well-intentioned physicians who were completely wrong in diagnoses and/or methods of approaching my various, relatively common health issues or I was prescribed inappropriate meds for what they perceived as something beneficial for me. By the time I developed AFib, I had learned the hard way about trusting every doctor to whom I was referred.

When I treated patients for dental hygiene care and updated their health histories at each visit, it was both sad and alarming to hear the many stories of misdiagnosis, mistreatment and their suffering and struggle to regain some semblance of health again.

I vowed many years ago to help create Awareness about various health issues and what we offer here on this forum is certainly doing that for Afibbers.

Jackie

Maybe there should be a digoxin thread.😁

Anyway, I appreciate the passion of this site along with the knowledge and people’s inherant desire to help complete strangers with solid information. I’m also a proponent of advocacy. It really is something a person needs in today’s medical climate. Not all Medical professional’s are created equally.

As a follow up: Just got back from my cardiologist who put me on 100mg of Flecainide twice daily, plus a low dose of metropolol if my heart rate gets too high to be comfortable. He put me on blood thinners ( just in case they want to cardiovert me in the future and also to prepare for another ablation ), set up a zio patch monitor ( so the EP department knows what they are dealing with) and set up a referral to the EP department of my HMO.

Hopefully the flec will calm my heart and I can go on riding my bicycle into the sunset!!! It already feels better than the beta blockers in regards to exercise. We shall see.

Thank you all for your knowledge, experience and passion ( lots of passion ).

Wish me luck!

Steve

Good luck, Steve. It sounds like you're in good hands.

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Carey
Yes, you had heart failure and that's why digoxin was appropriate for you.

Pretty close, anyway. I didn't know I had afib, so self treated with more exercise. I don't think cutting up a tree into logs with an axe while in afib helped...and I wouldn't recommend it to anyway as a cure. No definite causes where found in any tests (virus?), and the heart restored itself after getting back into rhythm. I think the cardio made a good choice in meds, basically saving my life.

Regarding doctors, I think there are easier clients. I refused to wear any life vest coming out of the hospital...told them I was okay with death. I refused Amiodarone after researching it. My cardio (a fellow windsurfer) was easy to talk with. I refused an angiogram ordered by my local EP (I didn't feel I had blocked arteries), but he (against my orders) phoned up Dr.Hongo who then required it before he would do the scheduled ablation. I was initially pissed, but then accepted that the EP was probably correct to check it.

I don't think it's at all appropriate to tell new posters that their providers are incompetent or what they should be prescribing if they were. Doctors certainly can make bad calls, but they have the advantage of training, experience, and access to the background and current circumstances of the client they are treating. Most work in a team, and are exposed to ongoing research and training.



Edited 2 time(s). Last edit at 08/15/2018 01:59AM by jpeters.

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Carey

Patients who educate themselves and question their doctors are patients who survive and get better.

Recently, my GP (he knows me for 30 years) said he was impressed with my very basic knowledge of ECG. He told me he was sure at least 75% of his fellows GP's have forgotten how to interpret ECG tracings.
When I realize so many people are prescribed meds by their GP for heart problems without ever seeing a cardiologist, it says long about the way we can play with our health. And it sounds stupid when we think that here in Belgium, very good (yes, very good) healthcare is nearly free. There's only a small fee for the patient, but it appears lots of them don't have this small fee or, to say it another way, are not disposed to part with it for their health.

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Socalsteve
As a follow up: Just got back from my cardiologist who put me on 100mg of Flecainide twice daily, plus a low dose of metropolol if my heart rate gets too high to be comfortable. He put me on blood thinners ( just in case they want to cardiovert me in the future and also to prepare for another ablation ), set up a zio patch monitor ( so the EP department knows what they are dealing with) and set up a referral to the EP department of my HMO.

Hopefully the flec will calm my heart and I can go on riding my bicycle into the sunset!!! It already feels better than the beta blockers in regards to exercise. We shall see.

Thank you all for your knowledge, experience and passion ( lots of passion ).

Wish me luck!

Steve

The only thing I'd add Steve is this. I've taken Flecainide 100mg BID for 10.5 years during which time I've also always added a small amount of Diltiazem (60mg modified release tablet) with my am dose - as during the day is the time I'm most likely to get my HR up - along with it to offset any (admittedly very small) risk of 1:1 AFlutter being caused by the Flecainide (as it is rarely known to do). As a vagal AFr I decided to go the Diltiazem route rather than the BB route in this regard. This all - I'd add - with the agreement of my doc and EP.

Pompon said: And it sounds stupid when we think that here in Belgium, very good (yes, very good) healthcare is nearly free. There's only a small fee for the patient, but it appears lots of them don't have this small fee or, to say it another way, are not disposed to part with it for their health.

Healthcare is never free - most Europeans pay very high taxes for their "free" healthcare.

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Carey
I'm sorry but I don't share your unquestioning worship of doctors. I've seen doctors kill patients through ignorance and lack of up-to-date training.

If I had stuck with my original cardiologist, I'd still be in a-fib and on 250 mg of metoprolol with a pacemaker. That was the advice at the time and, thankfully, my last office visit there.

At the time I didn't know what I know now about AF - not even a fraction of it - but I did know what "I don't know what the hell I'm doing" sounds like. Also how "I'm not listening to you" appears as body language. I'm nodding my head because sound waves are hitting my eardrums.

I still remain optimistic and feel that doctors mean well. I've never encountered malice but I've sure seen people out of their leagues. Sometimes by miles. You've got to take the reins to as much of an extent as possible. No one cares more about your health than you do.

No, it's not free. You're right, Ken. Taxes here are so high that the difference between the money I earn and the money I'm paid is about 40%. And it's not enough: there's the VAT applied on anything I buy.
But it wasn't any cheaper for me when I just needed to see my GP once a year for a cold than now If I have two ablation procedures in 12 months.
So, once you're in the system, and everyone here is in the system, it's not expensive seeing a specialist or two instead of just relying on your usual GP.
It's then amazing to meet people who say they're taking meds for their heart without having seen a cardiologist.

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mwcf

As a follow up: Just got back from my cardiologist who put me on 100mg of Flecainide twice daily, plus a low dose of metropolol if my heart rate gets too high to be comfortable. He put me on blood thinners ( just in case they want to cardiovert me in the future and also to prepare for another ablation ), set up a zio patch monitor ( so the EP department knows what they are dealing with) and set up a referral to the EP department of my HMO.

Hopefully the flec will calm my heart and I can go on riding my bicycle into the sunset!!! It already feels better than the beta blockers in regards to exercise. We shall see.

Thank you all for your knowledge, experience and passion ( lots of passion ).

Wish me luck!

Steve
The only thing I'd add Steve is this. I've taken Flecainide 100mg BID for 10.5 years during which time I've also always added a small amount of Diltiazem (60mg modified release tablet) with my am dose - as during the day is the time I'm most likely to get my HR up - along with it to offset any (admittedly very small) risk of 1:1 AFlutter being caused by the Flecainide (as it is rarely known to do). As a vagal AFr I decided to go the Diltiazem route rather than the BB route in this regard. This all - I'd add - with the agreement of my doc and EP.

Thank you for the advice! I think I will play it out a bit and see if I go back to having high heart rates before I take anything else but the Flec. The Metropolol did work to lower my rate, but at a cost of not enjoying my life. Maybe on days I don’t ride my bike, if I know I may be going into a situation where my heart rate may go high, I’ll take a small dose of the bb. We’ll see. It’s trial and error ( or hopefully success) at this point. I went 7.5 years afib free after my ablation and boy did it come back with a vengeance!!!

So far, so good with the 100mg of Flecainide twice a day. Woke up this morning feeling better than I have in awhile. Thanks again!

Now that I'm an afibber taking meds, I'm sure the average cyclist carrying 10kg potatoes on the front and rear racks of a fixie with flat tires would ride two times faster than me.

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wolfpack


I still remain optimistic and feel that doctors mean well. I've never encountered malice but I've sure seen people out of their leagues. Sometimes by miles. You've got to take the reins to as much of an extent as possible. No one cares more about your health than you do.

First piece of major research I do is on the doctor. When you find one, make sure you treat them well....it's a two way street.



Edited 1 time(s). Last edit at 08/15/2018 01:23PM by jpeters.

I learned a lot about digoxin when I started a thread. I had heard of this med before as being contraindicated for older patients.
Here's the link in case you want to do more reading!
[www.afibbers.org]
Edited to add: Dr. Natale also works out of Scripps, La Jolla (San Diego county)...depending on where you live in SoCal, it might be a better option than Thousand Oaks.



Edited 1 time(s). Last edit at 08/16/2018 03:06AM by SueChef.

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SueChef
I learned a lot about digoxin when I started a thread. I had heard of this med before as being contraindicated for older patients.
Here's the link in case you want to do more reading!
[www.afibbers.org]
Edited to add: Dr. Natale also works out of Scripps, La Jolla (San Diego county)...depending on where you live in SoCal, it might be a better option than Thousand Oaks.

I’m off the digoxin, thank you!

I’m in Los Angeles, so Thousand Oaks is much closer than La Jolla. Gonna play out my HMO EP department and see where that takes me. They did an amazing job 7.5 years ago, hopefully they will do another ablation on me. If not, I will switch insurances and use one that Natalie takes. I have an appointment with the EP doctor on Tuesday.

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SueChef
I learned a lot about digoxin when I started a thread. I had heard of this med before as being contraindicated for older patients.
Here's the link in case you want to do more reading!

Looks like the mortality issue is associated with incorrect dosage, incorrect diagnosis, and toxicity (longer than 3 years on digoxin??). It was successful in decreasing heart failure and mortality, etc. when used correctly. It isn't a "cure" for afib (what is ??). Certainly it's important to find a cardiologist who knows what they're doing.

SoCalSteve-- I had an ablation w/ Natale in Thousand Oaks. I live in Redondo Beach.

What a thread! I lived with AF for 16 years before my ablation this past April. Didn't even know it was called AF until I landed in the hospital in January with a stroke. I'm saying this to speak directly about doctors. I had a very well respected cardiologist who never could "catch" my arrhythmia. He never educated me about AF and the risks involved. It was the neuro surgeon who took out my brain clot that educated me. Sheesh! Same situation with my stage 4 kidney disease. Nephrologist back in 2012 never told me I was in stage 3 and what to do to prevent it from progressing. Now I find out I'm in stage 4 and dialysis will be in my future. Doctors may mean well, but they miss the ball sometimes.

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Victoria
Doctors may mean well, but they miss the ball sometimes.

One thing I haven't heard on this board yet is to go local regarding treatment. Same with cancer and any serious ailment. Fortunately, we have the internet to gather information. Not getting a diagnosis until late in the game is all too common, particularly in busy HMO settings. Good luck with your recovery.

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jpeters


No knowledgeable cardiologist trained in recent years prescribes digoxin for afib without heart failure.

I was prescribed digoxin by Stanford Health, and restored ejection function from low 20's to 55. Digoxin was just prescribed to the poster. Unlikely the poster is going to get heart failure from taking his prescribed dose.

Why do you assume that the Digoxin helped that much? IMO it may have helped some, but Digoxin did not restore your EF from 20 to 55. Getting back in NSR and lowering your HR did. If Digoxin consistently helped HR with a spectacular recovery like that it would heralded as a "Wonder Drug'' It is known that if some instances slowing down the Heart from uncontrolled AFIB can restore EF in the dramatic fashion that it did for you. I also had undiagnosed AFIB, resulting in TachyCardia induced Cardiomyopathy. I went from 20% to 65-70% after 18 months. I did not take Digoxin! As far as I know, the best Drug for improving Heart Contractibility (EF),is Coreg. The studies only show around a 5% increase in EF, and that is only on certain populations.

Circ Arrhythm Electrophysiol. 2015 Feb;8(1):49-58. doi: 10.1161/CIRCEP.114.002292. Epub 2014 Nov 20.

Digoxin and risk of death in adults with atrial fibrillation: the ATRIA-CVRN study.

[www.ncbi.nlm.nih.gov]

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The Anti-Fib



No knowledgeable cardiologist trained in recent years prescribes digoxin for afib without heart failure.

I was prescribed digoxin by Stanford Health, and restored ejection function from low 20's to 55. Digoxin was just prescribed to the poster. Unlikely the poster is going to get heart failure from taking his prescribed dose.

Why do you assume that the Digoxin helped that much? IMO it may have helped some, but Digoxin did not restore your EF from 20 to 55. Getting back in NSR and lowering your HR did. If Digoxin consistently helped HR with a spectacular recovery like that it would heralded as a "Wonder Drug'' It is known that if some instances slowing down the Heart from uncontrolled AFIB can restore EF in the dramatic fashion that it did for you. I also had undiagnosed AFIB, resulting in TachyCardia induced Cardiomyopathy. I went from 20% to 65-70% after 18 months. I did not take Digoxin! As far as I know, the best Drug for improving Heart Contractibility (EF),is Coreg. The studies only show around a 5% increase in EF, and that is only on certain populations.

My cardio put me on that, too (coreg). Answer..I don't. Just shared what I was taking and the results.

Jackie, who knows, perhaps Stanford Cardiologists know what they are doing (without consulting this board). At any rate, I survived.
"digoxin should be used with caution in the management of atrial fibrillation"



Edited 1 time(s). Last edit at 08/20/2018 12:00PM by jpeters.

Victoria:

I am so sorry about your kidney problems, it isn't enough that "doctors mean well", they shouldn't be doctors if they aren't doing their job. My stepson is dead because of a doctor, he said my stepson had a tumor and operated, my stepson had a cyst and it burst, went throughout his body he got septis and died. That did not have to happen, I don't trust much of what they say without either getting another opinion and researching what they say.

liz