Heart Rhythm Conditions – Welcome to the group

Welcome to the Heart Rhythm Conditions group on Mayo Clinic Connect.
Did you know that the average heart beats 100,000 times a day? Millions of people live with heart rhythm problems (heart arrhythmias) which occur when the electrical impulses that coordinate heartbeats don't work properly. Let's connect with each other; we can share stories and learn about coping with the challenges, and living well with abnormal heart rhythms. I invite you to follow the group. Simply click the +FOLLOW icon on the group landing page.

I'm Kanaaz (@kanaazpereira), and I'm the moderator of this group. When you post to this group, chances are you'll also be greeted by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.

Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@gloaming

I posted the video mainly for its update and confirmations that early treatment of AF is far better for most patients than to let it go and to let it ride for a while. Also, that CA is a better treatment, all things considered, than just monitoring or even rate/rhythm control meds. Yes, each case should be treated as the individual person they are, and with sensitivity to the patient's circumstances and wishes. And I will say that not every cases appears to progress, but it takes some serious considerations by the wearer. The information I have seen all state that it is a progressive disorder, but clearly there is a substantial range in speed and in outcomes.

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@gloaming I am only concerned for people in the subset to which I belong, with infrequent paroxysmal afib that proves to be relatively stable. I could easily have assented to daily medication and anti-coagulation after my first episode but instead have had 10 years without either. Even my first cardiologist agrees that people are being overmedicated.

By the way, diltiazem prolongs the QTc interval. Mine is already borderline. Medication daily would actually have been harmful. Other heart drugs (flecainide, amiodarone) are on the list of meds that affect QTc interval as well.

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@windyshores

@gloaming I watched the whole video, thanks.

Most of us knew this but these guidelines are definitive on the failure of aspirin to avoid stroke from AF.

I was glad they addressed "lifestyle factors" though it came last and should come first!

I am troubled that a case like mine, and I have no idea how common or uncommon my type of case might be, is not addressed at all. These MD's say that for symptomatic paroxysmal AF ablation in "selected patients (generally younger with few comorbidities).....in whom rhythm control is desired, catheter ablation can be useful as first- line therapy to improve symptoms and reduce progression." (This does leave room for addressing individual cases, with qualifying language.)

I hope this does not mean that ablation is considered after one episode. For that matter, I hope that medication and anticoagulation are not considered after one episode, for all patients. The trouble with guidelines is that the clinician needs to use discretion after discussion with the patient and evaluation of the whole picture. They should not be and are not written with the intent that they be used absolutely and universally- but will doctors use them that way?

I have gone 10 years without daily medication, any anticoagulation, or ablation- with episodes happening generally every year or even every two years. When they do happen my heart rate is near 200 and I land in the ER due to low bp's barrier to treatment. Even the ICU. Yet so far, my AF has not progressed, knock on wood.

My mother had permanent AF and heart failure, and had a stroke when taken off Coumadin for 5 days for a procedure, so I know what can happen. That said, the bleeding episodes she had were concerning- nose bleeds, GI bleeds, and from falls, and she had severe anemia as a result. She also had dementia from the AF and micro bleeds in the brain.

I am grateful that my EP gave me a "pill in the pocket" anticoagulant (as well as PIP diltiazem which I continue to prefer doing with a drip in ER) because once I reach 75 (when my CHADS goes up) there will be more pressure to do an anticoagulant, and I know I am not invulnerable. The video does not mention episodic use of anticoagulants and I wish this targeted use was mentioned.

Again, this video does address "lifestyle factors" which generally means weight, high blood pressure and diabetes. I have none of these risk factors but my CHADS is 2 due to gender and age, soon to be 3. Thanks to a poster on afibbers.org a few years ago, I started drinking low sodium V-8 for potassium. For several reasons I also take magnesium and calcium. I added CoQ10. Identifying triggers has helped a lot: eating and reclining, eating after 6 so closer to bed, reclining after eating, GI gas (simethicone helps) lifting heavy things, and sudden alarms have all been triggers.

One hospital did an echo after my one episode greater than 2 hours (7 hours) to make sure there was no clot- probably not entirely reliable- since I declined anticoagulation. Now, with pill in a pocket, I would have that resource.

Last year I bought "The Afib Cure" by cardiologists Day and Bunch, who posit that progression is not inevitable and that for some, slowing progression or even "curing" afib is possible with hard work. This book also covers medications and ablations and the title is a bit misleading. But it did confirm that some of the things I and others were doing were indeed helpful. I say this with respect for the challenges faced by many for whom this type of thing is not going to work. I am mainly addressing concern for people like myself who are faced with doctors recommending medications and anticoagulation- or even ablation- after one episode when frequency is not yet known.

I have requested monitoring from time to time to make sure I am not having subclinical AF, and the results show no afib in a month. Some flutters, some tachycardia, some bradycardia, basically seconds of each. I have a Kardia and keep the battery active.

Guidelines are like recipes. Over the years, with my health issues, my daughter's and my mother's, I have seen that some doctors use them that way, and some go beyond to individualize after real discussion with the patient. I know doctors have liability concerns and following evidence-based protocols is protective, but they are also protected if they offer and we decline.
I would love to hear a cardiologists say that progression does not always happen. Day and Bunch write that in their book but I have yet to hear it in person, and I don't know if it is true. Time will tell!

Jump to this post

I posted the video mainly for its update and confirmations that early treatment of AF is far better for most patients than to let it go and to let it ride for a while. Also, that CA is a better treatment, all things considered, than just monitoring or even rate/rhythm control meds. Yes, each case should be treated as the individual person they are, and with sensitivity to the patient's circumstances and wishes. And I will say that not every cases appears to progress, but it takes some serious considerations by the wearer. The information I have seen all state that it is a progressive disorder, but clearly there is a substantial range in speed and in outcomes.

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@timheart1

Interesting, thanks. I am not sold on having another CA. My 3rd one was at Mt Sinai, NYC w/ a top doctor. Normal sinuis rhythm lasted 3 years.

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It would seem to be counterproductive at some point, although I know of one person who has had 6 of them, and he is one of the two co-hosts and moderators over at affibers.org. He claims to have been free of AF for ten years now. Last ablation was by Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin. Trained by the vaunted Dr. Pierre Jais in Bordeaux, FR.

While being in NSR for three years is a win, it's discouraging that it had to come to an end, something I always take pains to warn newcomers to these AF discussions about. I don't know what the true numbers of eventual recurrent AF are of all ablatees, but it must be close to 50-60%. Even so, while in NSR there is a slowing of the remodeling process, which is also a win...in my books.

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@timheart1

Interesting, thanks. I am not sold on having another CA. My 3rd one was at Mt Sinai, NYC w/ a top doctor. Normal sinuis rhythm lasted 3 years.

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I found this:

pmc.ncbi.nlm.nih.gov · articles · PMC7340875A review on plants and herbal components with antiarrhythmic ...

I am going to try each one, first is saffron. I use Garligin instead of Eliquis. It works agreat as a blood thinner, no side effects and much, much less expensive. I have used it for years.

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Interesting, thanks. I am not sold on having another CA. My 3rd one was at Mt Sinai, NYC w/ a top doctor. Normal sinuis rhythm lasted 3 years.

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@gloaming

The meds lose effectiveness over time, but usually many months. It could just be that your disorder is progressing more rapidly than most and you might need an EP's intervention. I hope you can be patient and keep some positivity. It's hard, I know, when there's so much uncertainty, but have faith and be optimistic. There's a way through this, including biting your knuckles and watching the clock.

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Thank you for comment and supportive encouragement, and you’re right, feeling the palpitations makes me quite anxious, to the point where I have to use anxiolytic meds.

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@gloaming I watched the whole video, thanks.

Most of us knew this but these guidelines are definitive on the failure of aspirin to avoid stroke from AF.

I was glad they addressed "lifestyle factors" though it came last and should come first!

I am troubled that a case like mine, and I have no idea how common or uncommon my type of case might be, is not addressed at all. These MD's say that for symptomatic paroxysmal AF ablation in "selected patients (generally younger with few comorbidities).....in whom rhythm control is desired, catheter ablation can be useful as first- line therapy to improve symptoms and reduce progression." (This does leave room for addressing individual cases, with qualifying language.)

I hope this does not mean that ablation is considered after one episode. For that matter, I hope that medication and anticoagulation are not considered after one episode, for all patients. The trouble with guidelines is that the clinician needs to use discretion after discussion with the patient and evaluation of the whole picture. They should not be and are not written with the intent that they be used absolutely and universally- but will doctors use them that way?

I have gone 10 years without daily medication, any anticoagulation, or ablation- with episodes happening generally every year or even every two years. When they do happen my heart rate is near 200 and I land in the ER due to low bp's barrier to treatment. Even the ICU. Yet so far, my AF has not progressed, knock on wood.

My mother had permanent AF and heart failure, and had a stroke when taken off Coumadin for 5 days for a procedure, so I know what can happen. That said, the bleeding episodes she had were concerning- nose bleeds, GI bleeds, and from falls, and she had severe anemia as a result. She also had dementia from the AF and micro bleeds in the brain.

I am grateful that my EP gave me a "pill in the pocket" anticoagulant (as well as PIP diltiazem which I continue to prefer doing with a drip in ER) because once I reach 75 (when my CHADS goes up) there will be more pressure to do an anticoagulant, and I know I am not invulnerable. The video does not mention episodic use of anticoagulants and I wish this targeted use was mentioned.

Again, this video does address "lifestyle factors" which generally means weight, high blood pressure and diabetes. I have none of these risk factors but my CHADS is 2 due to gender and age, soon to be 3. Thanks to a poster on afibbers.org a few years ago, I started drinking low sodium V-8 for potassium. For several reasons I also take magnesium and calcium. I added CoQ10. Identifying triggers has helped a lot: eating and reclining, eating after 6 so closer to bed, reclining after eating, GI gas (simethicone helps) lifting heavy things, and sudden alarms have all been triggers.

One hospital did an echo after my one episode greater than 2 hours (7 hours) to make sure there was no clot- probably not entirely reliable- since I declined anticoagulation. Now, with pill in a pocket, I would have that resource.

Last year I bought "The Afib Cure" by cardiologists Day and Bunch, who posit that progression is not inevitable and that for some, slowing progression or even "curing" afib is possible with hard work. This book also covers medications and ablations and the title is a bit misleading. But it did confirm that some of the things I and others were doing were indeed helpful. I say this with respect for the challenges faced by many for whom this type of thing is not going to work. I am mainly addressing concern for people like myself who are faced with doctors recommending medications and anticoagulation- or even ablation- after one episode when frequency is not yet known.

I have requested monitoring from time to time to make sure I am not having subclinical AF, and the results show no afib in a month. Some flutters, some tachycardia, some bradycardia, basically seconds of each. I have a Kardia and keep the battery active.

Guidelines are like recipes. Over the years, with my health issues, my daughter's and my mother's, I have seen that some doctors use them that way, and some go beyond to individualize after real discussion with the patient. I know doctors have liability concerns and following evidence-based protocols is protective, but they are also protected if they offer and we decline.
I would love to hear a cardiologists say that progression does not always happen. Day and Bunch write that in their book but I have yet to hear it in person, and I don't know if it is true. Time will tell!

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@timheart1

Thanks for your import, I am going to look into a ICD.

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@gloaming

Cardiac arrhythmias do seem to progress over time, even with an ablation that seems to 'cure' the arrhythmia. An ablation, if successful (the cardiology field calls an ablation a success if the patient remains free from the treated arrhythmia for one full year), merely surrounds the re-entrant for the extra voltage with scar tissue. The voltage cannot escape the 'stockade' of scarring, so it can't cause the atrium to beat. However, the heart is always remodeling itself to an extent and it will often, not always, but often, develop new foci for the voltage issued by the migrant nodal cells being deposited here and there in the substrate. When that happens, you'll get another arrythmia, but not necessarily a return of AF. Sometimes another ablation is the ticket, while for others no amount of ablating will stop the arrhythmia.

This is an electrical disorder. It might have something to do with electrolyte imbalance in the myocytes, in which case supplements could help. You'd need, and want, a formal diagnosis of a deficiency before you start swallowing pills, so see your cardiologist. Many of us supplement with magnesium anyway and don't come to harm. As long as you don't overdose on it, you'll be fine. I have taken magnesium citrate (this is one formulation you do not want to take too much of or you'll be a frequent visitor to the bathroon!). I have also taken the bis-glycinate formulation and am currently on the malate formulation for giggles. They're all varieties of magnesium salts.

If your heart stays in arrythmia for long, it will begin to change, and not for the better. It's called 'remodelling'. Remodeling comprises the deposition of collagen in the interstitial tissue of the myocardium and fibrosis. The chamber walls will thicken and they'll become less easily changeable in shape, which is how they pump blood. Eventually, you are highly likely to develop 'heart failure', or cardiac insufficiency. So, if you are asking me for some pointed advice, find someone who can get you on a drug that controls your arrhythmia that doesn't also make you feel that life isn't worth living that way. You may have to consider a pacemaker. Literally millions live with a pacemaker.

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Thanks for your import, I am going to look into a ICD.

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Hello,
I am a 65 year old female and recently have been diagnosed with congenital long QT. I am asymptomatic and it was only picked up on a routine ECG and confirmed after an exercise stress test. I have been referred for genetic testing but this may not happen for sometime. In the meantime, I have been started on nadolol. I am interested in hearing from anyone else who has been diagnosed with long QT later in life.

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