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

You might be better off with an ablation. It is now considered to be the 'gold standard' for AF. What makes the difference, though, is the experience and skill of the EP. Find one who is busy, well regarded, and who does between six and ten ablations each week.

Just so you know, most EPs will want initially to tackle the pulmonary vein ostia where 80%+ of all AF originates. It's a reasonable first step, but while he/she is 'in there', a good EP will map the atrial wall and find other foci...if they exist...and ablate those. No common dog asking a patient to return in six months for another go at it when the risk is doubled, so a conscientious EP will do everything possible, barring complications or an already long ablation, at the one time.

Additionally, about 25% of all initial, or 'index', ablations fail. This is common across practicing EPs, although some do much better, notably Dr. Andrea Natale at Texas Cardiac Arrhythmia Institute in Austin. He travels to quite a few hospitals across the USA, but give his office a call if you can travel, and if you want the best.

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Thanks so much for your reply. I've been looking into the newer Pulsed Field Ablation. I wish I could get a second opinion outside the practice I'm going to. Unfortunately, for a number of reasons including cost and distance, I don't think I have that option.
I really appreciate your advice

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@lindy9

I am 76, and also have reactions to drugs so I don't. I improve or eliminate about all health problems by investigating how to get rid of them naturally through diet etc.

I had a next door neighbor in Florida who was trying to prove to her family that she was fine living alone. And she was just fine. But went to a doc and a number a little high and put her on a med. That drug caused her legs to swell up, so another drug to get rid of excess water which she never had. It was like a snowball going downhill. She became depressed from the handful of pills she was taking and within about 6 months closed her eyes, stopped eating and died on purpose. It was 100% the doctor's fault. Other than her agreeing. I googled all her meds and all her symptoms were from the drugs.

A friend's aunt 80 yrs old was diagnosed with stomach cancer. The doc's said she would die if she didn't have operation, chemo, and radiation. She said NO!!! She lived until 92!

I just googled the side effects of Tikosyn. Here is the list: Diarrhea, Nausea, Dizziness, Rash, Chest pain, Shortness of breath, Headache, Heart arrhythmia, Loss of appetite, Stomach pain,
Back pain, Insomnia, Respiratory infection, Runny nose, Unusual sweating, Fainting, Flu-like symptoms, Paralysis, Fatigue, Heart attack, Increased thirst.

I strongly suggest you google any meds and procedures for side effects and ask yourself without them pressuring you, is this what I want? They told you - If I do nothing, I'm told it will continue to get worse and won't be able to be corrected. I wish you lived near me, and would invite you to my house for a long chat.

My pea brain suggestions:
1 Are you drinking or eating ANYTHING with caffeine? Coffee, colas, Mountain Dew, chocolate etc?
2 Are you drinking water every day? The first of January, I started drinking water. It is VERY difficult for me, and not up to 8 cups yet, 5 ot 6. Used to drink maybe one! It has made a HUGE difference in just ONE MONTH!
3 Do eat dairy? anything with wheat such as bread, cookies, cake etc.? Processed junk food, high sugar foods? If so, cut down and out.
4 Read Psalms and the rest of the Bible for peace, and have a talk with God and His son every day.
5 Do some walking if able.

Please let me know if anything I have said rings a bell or helps.

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Thank you for your ideas and encouragement,
I am trying already to do most of the things you suggest. One of hardest is 8 glasses of water! I force down at least 45 oz but it is hard, No dairy, no added sugar, try to stay away from processed food and caffeine and dairy - not perfect at all but pretty good and getting better, I do pray, and I will follow up on your suggestions about Psalms. Walking is hard - I have to use a walker because of a foot injury and some balance issues - I hope when our weather gets a little better to try to get outside to do more even with the walker. I I think exercise is my weakest area because of mobility problems and pain. I have had so many problems with drugs - yes, I read the side effects and they are scary. I already have 17 medications listed in my medical chart that I have reacted to - you'd think they would already be considering that!
I so appreciate your thoughtful response and agree that sometimes the "cure" can be worse than the disorder. You have given me encouragement!
I do wish I lived near you for ongoing support!

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@lindabp

Hi, I'm 81, have had afib for 2 years, now classified as persistent afib- measured on Kardia and frequent EKG, but I have very few low grade noticeable symptoms. On Eliquis and Diltiazem. Had 2 cardioversions, lasted about 6 months each, but they don't want to do any more. Suggesting a drug Tikosyn (have to be in hospital 3 days to titrate, plus regular EKG checkups). I don't feel comfortable about that because I have allergic or non tolerant reactions to almost 20 drugs, listed in my chart records, and this one I really don't feel secure about. Suggested follow-up Walkman, to allow me to go off blood thinner (I did have one fall that caused a small subdural hematoma.) I feel PF ablations would be better, we are in discussion about this now (coming week appointment). I am confused, scared, have all new doctors due to retirement or relocation, so don't have anyone I know well enough to feel comfortable with. If I do nothing, I'm told it will continue to get worse and won't be able to be corrected. I just feel lost about how to make these decisions. I can't get in to see my new regular cardiologist until May - Previous one moved out of state. Now working with EP Cardiologist - new to me and new, very young to hospital system. Sorry for the long intro -(this sounds like the continuous obsessive thoughts that run through my head constantly so .....) Would love to hear from anyone who has had these hard decisions to make.

Jump to this post

I am 76, and also have reactions to drugs so I don't. I improve or eliminate about all health problems by investigating how to get rid of them naturally through diet etc.

I had a next door neighbor in Florida who was trying to prove to her family that she was fine living alone. And she was just fine. But went to a doc and a number a little high and put her on a med. That drug caused her legs to swell up, so another drug to get rid of excess water which she never had. It was like a snowball going downhill. She became depressed from the handful of pills she was taking and within about 6 months closed her eyes, stopped eating and died on purpose. It was 100% the doctor's fault. Other than her agreeing. I googled all her meds and all her symptoms were from the drugs.

A friend's aunt 80 yrs old was diagnosed with stomach cancer. The doc's said she would die if she didn't have operation, chemo, and radiation. She said NO!!! She lived until 92!

I just googled the side effects of Tikosyn. Here is the list: Diarrhea, Nausea, Dizziness, Rash, Chest pain, Shortness of breath, Headache, Heart arrhythmia, Loss of appetite, Stomach pain,
Back pain, Insomnia, Respiratory infection, Runny nose, Unusual sweating, Fainting, Flu-like symptoms, Paralysis, Fatigue, Heart attack, Increased thirst.

I strongly suggest you google any meds and procedures for side effects and ask yourself without them pressuring you, is this what I want? They told you - If I do nothing, I'm told it will continue to get worse and won't be able to be corrected. I wish you lived near me, and would invite you to my house for a long chat.

My pea brain suggestions:
1 Are you drinking or eating ANYTHING with caffeine? Coffee, colas, Mountain Dew, chocolate etc?
2 Are you drinking water every day? The first of January, I started drinking water. It is VERY difficult for me, and not up to 8 cups yet, 5 ot 6. Used to drink maybe one! It has made a HUGE difference in just ONE MONTH!
3 Do eat dairy? anything with wheat such as bread, cookies, cake etc.? Processed junk food, high sugar foods? If so, cut down and out.
4 Read Psalms and the rest of the Bible for peace, and have a talk with God and His son every day.
5 Do some walking if able.

Please let me know if anything I have said rings a bell or helps.

REPLY

Hi, I just got diagnosed today with SVT, am a bit in shock, thought I was just having flutters recently. I will be started on a med, but not even sure what the name is yet until it comes in the mail.

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@lindabp

Hi, I'm 81, have had afib for 2 years, now classified as persistent afib- measured on Kardia and frequent EKG, but I have very few low grade noticeable symptoms. On Eliquis and Diltiazem. Had 2 cardioversions, lasted about 6 months each, but they don't want to do any more. Suggesting a drug Tikosyn (have to be in hospital 3 days to titrate, plus regular EKG checkups). I don't feel comfortable about that because I have allergic or non tolerant reactions to almost 20 drugs, listed in my chart records, and this one I really don't feel secure about. Suggested follow-up Walkman, to allow me to go off blood thinner (I did have one fall that caused a small subdural hematoma.) I feel PF ablations would be better, we are in discussion about this now (coming week appointment). I am confused, scared, have all new doctors due to retirement or relocation, so don't have anyone I know well enough to feel comfortable with. If I do nothing, I'm told it will continue to get worse and won't be able to be corrected. I just feel lost about how to make these decisions. I can't get in to see my new regular cardiologist until May - Previous one moved out of state. Now working with EP Cardiologist - new to me and new, very young to hospital system. Sorry for the long intro -(this sounds like the continuous obsessive thoughts that run through my head constantly so .....) Would love to hear from anyone who has had these hard decisions to make.

Jump to this post

You might be better off with an ablation. It is now considered to be the 'gold standard' for AF. What makes the difference, though, is the experience and skill of the EP. Find one who is busy, well regarded, and who does between six and ten ablations each week.

Just so you know, most EPs will want initially to tackle the pulmonary vein ostia where 80%+ of all AF originates. It's a reasonable first step, but while he/she is 'in there', a good EP will map the atrial wall and find other foci...if they exist...and ablate those. No common dog asking a patient to return in six months for another go at it when the risk is doubled, so a conscientious EP will do everything possible, barring complications or an already long ablation, at the one time.

Additionally, about 25% of all initial, or 'index', ablations fail. This is common across practicing EPs, although some do much better, notably Dr. Andrea Natale at Texas Cardiac Arrhythmia Institute in Austin. He travels to quite a few hospitals across the USA, but give his office a call if you can travel, and if you want the best.

REPLY

Hi, I'm 81, have had afib for 2 years, now classified as persistent afib- measured on Kardia and frequent EKG, but I have very few low grade noticeable symptoms. On Eliquis and Diltiazem. Had 2 cardioversions, lasted about 6 months each, but they don't want to do any more. Suggesting a drug Tikosyn (have to be in hospital 3 days to titrate, plus regular EKG checkups). I don't feel comfortable about that because I have allergic or non tolerant reactions to almost 20 drugs, listed in my chart records, and this one I really don't feel secure about. Suggested follow-up Walkman, to allow me to go off blood thinner (I did have one fall that caused a small subdural hematoma.) I feel PF ablations would be better, we are in discussion about this now (coming week appointment). I am confused, scared, have all new doctors due to retirement or relocation, so don't have anyone I know well enough to feel comfortable with. If I do nothing, I'm told it will continue to get worse and won't be able to be corrected. I just feel lost about how to make these decisions. I can't get in to see my new regular cardiologist until May - Previous one moved out of state. Now working with EP Cardiologist - new to me and new, very young to hospital system. Sorry for the long intro -(this sounds like the continuous obsessive thoughts that run through my head constantly so .....) Would love to hear from anyone who has had these hard decisions to make.

REPLY
@tresjur

Hello Eileena,

No, the implant is not an ICD. The Watchman does not affect the abnormal heart pumping, but rather acts as a dam to permanently close of the Left Atrial Appendage (LLA), Closing off the LLA can prevent a blood clot from blocking blood supply to the brain. I was on Warfarin for 14 years for A-Fib until my body could no longer tolerate it; the following 3 years on aspirin only and the Watchman implanted 14 months ago.

Tresjur

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Hell I am 71 now,I have had Afib sence I was 27.it was hard to learn to live with but I have.my hart is running to slow now and need a pacemaker. Runninglate 71

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Can I have bradycardia and afib concurrently?

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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!

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I totally agree with your statement. "I was glad they addressed "lifestyle factors" though it came last and should come first!"

It is like telling the police about your concern about safety, but they ASSume you lock your doors and don't forget to wear clothes when you go out.!

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