Doctors & patients are saying about 'A-Fib.com'...
"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."
Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN
"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."
Jill and Steve Douglas, East Troy, WI
“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP.
Faye Spencer, Boise, ID, April 2017
“I think your site has helped a lot of patients.”Dr. Hugh G. Calkins, MD Johns Hopkins,
Baltimore, MD
Warfarin Users: NOACs now First-line Therapy
The use of warfarin (Coumadin, Jantoven) to prevent clots is no longer recommended for most A-Fib patients. With a superior safety profile, NOACs (Novel Oral Anticoagulants) are now recommended as first-line therapy for suitable A-Fib patients. NOACs include dabigatran (Pradaxa), rivaroxaban (Xarelto), Apixaban (Eliquis) and edoxaban (Savaysa).
A-Fib treatment guidelines were updated in 2019 by the American Heart Association/American College of Cardiology/Heart Rhythm Society (AHA/ACC/HRS).
The guidelines recommend that Coumadin no longer be used to treat A-Fib except for a limited, specific group of patients. Instead, guidelines strongly recommend using NOACs (DOACs).
“New scientific studies show that NOACs may be safer for patients because there is less risk of bleeding, and they may also be more effective at preventing blood clots than warfarin,” said Craig T. January, MD, PhD, FACC, co-chair of the focused update.
NOACs (or DOACs) Guidelines
The guidelines instead encourage the use of “novel [direct] oral anticoagulants” (NOACs or DOACs) which are better at preventing stroke and have fewer side effects. I’ve written about the NOACs several times:
…Eliquis (apixaban) tested the best and is the safest. But all NOACs are considered high risk drugs and should only be taken if there is a real risk of stroke. (Warfarin vs. Pradaxa and the Other New Anticoagulants)
For example, if you’ve been cured of A-Fib and are A-Fib free by a catheter ablation, you normally don’t have to take NOACs. You aren’t in danger of having an A-Fib stroke if you don’t have A-Fib. NOACs are not like taking vitamins. (Blood Thinners After Ablation)
High Cost of NOACs: Co-Pay Card and Patient Assistance Discounts
I know NOACs are much more expensive than Coumadin. And I understand if you and your doctor may choose to continue using Coumadin because of the high cost of a NOACs.
But don’t give up so fast. There are resources to save on prescription cost. For example, here are two resources on Eliquis to check:
• Drugs.com has a very informative page about the NOAC, Eliquis. For example, see Eliquis Prices, Coupons and Patient Assistance Programs
• Eliquis Customer Connect: Bristol-Myers Squibb offers an Eliquis Co-pay card and program which might work to reduce your cost. See ELIQUIS Costs, Savings and Support.
“Eliquis Co-pay Card: Eligible patients may pay no more than $10 per 30-day supply for up to 24 months with an annual savings of $3800; for additional information, contact the program at 855-354-7847.”
Other NOAC drug companies may have similar discount plans. We offer these links to help you get started:
• Pradaxa (dabigatran), see PRADAXA Savings & Support
• Xarelto (rivaroxaban), see Get Savings and Support for XARELTO
• Savaysa (edoxaban), see The SAVAYSA Savings Card
If you are 65 or older, you may qualify for Senior Discounts.
Talk to Your Doctor if You’re on Warfarin
If you’ve on warfarin (Coumadin, Jantoven) to prevent blood clots, you know that this powerful drug can save your life. But warfarin treatment is a careful balance, and certain factors can tip the balance, increasing the risk of bleeding.
If you are taking warfarin, talk to your doctor about the NOACs and whether you should change from warfarin.
Taking an anticoagulants (and which one) is one of the most difficult decisions you and your doctor must make.
Medical ID: If you’re on any blood thinner, it’s a good idea to carry some kind of medical ID. If you have an accident involving bleeding, EMTs can call ahead to the ER and get the staff ready to help you. To print your own I.D. see: Print a free Medical Alert I.D. Wallet Card
“Your A-Fib is Just Nerves”…”Try Not to Think About It”; At 72 Finally A-Fib & PVCs-Free After 2 Ablations, But Then a Setback
By Cecelia Hender, July 2020
Cecelia Hender and granddaughter
I have been asked to write my story about my journey with A-Fib. I have had arrhythmias since I was a young woman. I was about 20 years old when I first experienced irregular heartbeats. I had gone to my doctor back then and was told it was “nerves” and to relax. This was how most women were treated by doctors back then. Everything was “nerves”.
Time passed, and the irregular heartbeats seemed to get worse at times.
In my 30’s, I remember going to another doctor and told him that when my heart would take off like a race horse, I could not breathe. And when it stopped, I felt I could climb a mountain again. He said, “try not to think about it.” What ????
I fought with these irregular heartbeats for many years. I was on different blood pressure meds that also helped with heartbeats, but I was never told to see a cardiologist or have a doctor investigate just what was going on.
Once or twice, when I was younger, a doctor had me wear a heart monitor. It was a 24-hour monitor. And when it showed nothing for that period of time, he said I was fine.
Sent to a Cardiologist Almost By Accident―Hard to Document the Arrhythmia
I worked for a medical facility, and one day about 15 years ago a young doctor came in for an interview. He sat in my office for a good amount of time while they were preparing for the interview. During this time, I got to talk to him a lot.
When he said he was an electrophysiologist [cardiac specialist], I asked about my irregular heartbeats. He was so kind and intelligent and gave me a lot of information to think about.
It was this young doctor who told me that I should see a cardiologist. So, I did. And I was treated with medications and had many heart monitors.
But it was always hard to catch the arrhythmias on an ECG or heart monitor.
“You are in A-Fib”―Two Weeks of A-Fib Hell…
Finally, in 2017 I had another [heart] monitor, and it showed a series of irregular heartbeats.
But on this one particular day, I had a very irritating rhythm. It was very fast, then irregularly fast, and I could barely breathe. I went to my PCP [Primary Care Physician] office where they did an EKG and said, “You are in A-Fib”.
They sent me immediately to my cardiologist who confirmed this. I was put on a different kind of med (Metoprolol at first and also Coumadin). And “fingers crossed” I would convert on my own.
…Then Blessed ‘Normal Sinus Rhythm!’
It took almost two weeks, but I remember like it was yesterday, the moment my heart decided to go back into normal sinus rhythm.
The feeling was like a major blessing had just descended on me. I was so happy and felt so strong in that very moment. I cried.
Dr. Seth McClennen―Successful Ablation! But PVCs Major Issue
I met with Dr. Seth McClennen, an Electrophysiologist, who decided I was a good candidate for ablation. I was so thrilled.
Finally, someone was going to help me be normal!
My whole life was spent afraid and never going anywhere alone for fear that my heart would act up and I’d be stranded someplace unable to breathe – unable to move. Finally, I found some help.
Dr. Seth McClennen is a well-known and most beloved Electrophysiologist here in the Boston area. He is the best in my book.
He told me all that I needed to know about ablation, and off I went for my very first A-Fib ablation in June 2017.
It was successful! I went almost two years without an episode of A-Fib at all whatsoever.
However, my PVC’s were a major issue. They still kept me house-bound for the most part. Afraid to go anywhere alone. Although PVC’s don’t carry the risk of stroke that A-Fib has, they were just as debilitating.
A Second Ablation for PVCs―Without General Anesthesia―No Big Deal
Dr. McClennen suggested a second ablation for the PVC’s in January 2019. He said that it would be best if I could go through this without anesthesia, because with sedation, the PVC’s would “hide,” and the ablation would be difficult.
So, I did it … my trust in Dr. McClennen and his wonderful team outweighed any fear or apprehension on my part.
My second ablation was in April 2019. The ablation without sedation was no big deal at all. Now I am talking about a PVC ablation. Seth McClennen was right there working, and I could talk to him any time. He kept me informed as to what was going on.
At one point he said, “Think of something that irritates you so we can get these to come out, and I can follow the path.” So something that irritates me or causes stress will bring these out …. Well, it worked, and he was able to ablate these PVC’s.
Successful PVCs Ablation―Living Without Fear
For the first time in my whole life, I was able to move about without fear.
I could go to the store and feel normal—I was not worried that my heart would go crazy and I would be left in a puddle somewhere with no one to help me.
(Being a widow, it is very hard to continue life alone especially where your health is concerned. My husband died eight years ago when he was only 60 years old. I have never recovered.)
A Setback: Respiratory Infection Triggers A-Fib
Life was good as far as my heart was concerned. For three months I had no A-Fib or PVC’s. Then suddenly in April 2019, I got an upper respiratory infection which kicked off an episode of A-Fib. Oh no!!!…This familiar awful feeling was something I remembered.
It woke me up, and I immediately took my heart rate. It was 198. No one to take me to the hospital. And with my nerves, I did not want to call an ambulance. That was a BIG MISTAKE. I won’t do that again….
Anyway, a few hours later, my cousin came and took me to the Emergency Room.
They tried Cardioversion TWICE, but it did not work; so, I was put on the antiarrhythmic Tikosyn (dofetilide).
Tikosyn Works, But “Can I Have Another Ablation?”
I had to stay in the hospital for a week to level out and make sure this antiarrhythmic would be okay for me. It got my heart in perfect order, but I don’t want to stay on this forever.
So, my next question for my wonderful Dr. McClennen was “Can I have another ablation”? He answered, “Yes, we will discuss it in the Fall.”
Is Another Ablation on the Horizon?
So, I am waiting eagerly for Fall 2020 when we can discuss another A-Fib ablation. In the mean time, let me share what I’ve learned so far about treating Atrial Fibrillation.
Lessons Learned
Ablation is a Blessing and Low Risk―Better Than Living in Fear
Why do I feel excited about ablation? I truly feel that having an ablation is a blessing. And this is why I am writing this story for you.
I know there are risks and I know people are afraid of ablations, but the risks are nothing compared to living each moment of your life afraid to live.
Find a Great Doctor!
The trick is finding a great doctor. Not just a good doctor, but a great doctor. What makes a great doctor? Well, to ME … it’s someone who listened to me. Dr. Seth McClennen listened. He cared. He even wants me to email him when I have a concern or question. He always answers me. Always.
Kardia Device a Great Help
Using Kardia with tablet; under $100.
I have a Kardia machine – it’s that little EKG tag that you can email to your doctor. I have sent Dr. McClennen my EKG when I’ve had a question. More so now, with this antiarrhythmic drug, I am always tempted to take an EKG and send it to say “How am I doing?” Some days I just need to know my heart is in good order.
Find a Great Pharmacist As Well
It helps greatly to have a wonderful pharmacist too. Someone you can confide in and who will help you. The particular drug I am on interacts with so many things that I have to check everything with the pharmacist. Lisa Cohen Szumita is a wonderful pharmacist who is there to answer all my questions.
So, my advice is to have a great doctor – and a wonderful Pharmacist who has that rare quality these days of “Caring” for their patients.
Your Attitude is Your Greatest Weapon
As far as ablations go…your attitude is your greatest weapon.
If you are told you need an ablation, be blessed. Be thankful and blessed.
It’s what we AFIBBERS have to help us live a normal life. Thanks be to God! When you are going to have your ablation, go into that hospital thanking God and asking Him and His angels to surround you.
Ask all of us here on the A-Fib.com website to hold you in prayer and good thoughts. That is what we are called to do.
Leave fear behind you – don’t bring fear into your procedure. Bring FAITH and JOY and PEACE. I went into that A-Fib ablation with such excitement—to finally live a life where I was not afraid to be in the store alone. A simple thing … but I was unable to do it. After ablation, my life was restored.
I was so very upset that an upper respiratory infection brought me down. But I am on the right track again. So for the time being, I will take this antiarrhythmic. (Please don’t send me any scary emails about what I take.) I’ve heard it all. I did all the reports at work that had any and all of these drugs listed. I know all about it. But for now, it’s what I have to do
When the Fall comes, if my cardiologist says I’m good for another ablation …. Well, thanks be to God !! …. And so it is.
P.S. I’ll update my story when I have something to share. If you want to write me, send an email to Steve and he will forward it.
Cecelia Hender
Abington, Massachusetts
Editor’s Comments
I can’t help but get angry reading Cecelia’s story. After repeated heart rhythm complaints to her doctors, I can’t believe she wasn’t referred to a cardiologist.
She’s not alone with doctors dismissing women’s symptoms.
Other female patients have reported being told: “You’re experiencing a type of panic disorder.” “You’re exaggerating.” “A-Fib is no big deal.” “Take a Valium.” “Just take your meds and get used to being in A-Fib.”
Consequences of Gender Bias: If you are female, be prepared to experience gender bias in the medical field (but less so among Electrophysiologists [EPs]).
Beware of condescending behavior. You don’t have to accept or put up with that kind of attitude. Anticipate gender bias! Don’t let it deter you! (For more see: Women with A-Fib: Mother Nature and Gender Bias—Or—Get Thee to an EP ASAP.)
Don’t Just Live with A-Fib: Educate Yourself! Cecelia had irregular heartbeats for decades before she learned she should consult a specialist, a Cardiologist (an electrophysiologist to be exact).
Thankfully Cecelia finally got her Atrial Fibrillation diagnosed. She then found one of the best electrophysiologists (EP) in her area. She learned about A-Fib. She got the best and most up-to-date advice and treatment. She had lived in fear of her A-Fib but found her cure in spite of her fears.
Catching the Arrhythmias: Cecelia describes very well her frustration when doctors tried and failed to document her A-Fib. All too often when you have occasional (paroxysmal) A-Fib, you’ll be in the doctor’s office and your heart is in normal sinus rhythm (NSR). If you’re not in A-Fib, they can’t document it with an ECG. Frustrating!
(I remember spending all morning in a doctor’s office waiting for an A-Fib attack so that an EKG can document it. But no luck. Then when I went downstairs for lunch, that‘s when I had an A-Fib episode.)
iRhythm Zio patch
Advancements in Heart Monitoring. Today doctors have any number of monitoring and data recording devices to “catch” A-Fib episodes.There are patches such as a Zio Patch which looks like a big Band Aid and which you wear for 1 or 2 weeks.
Medtronic Reveal LINQ
Another is an implantable loop recorder like the Medtronic Reveal LINQ which is inserted under your skin in a very simple, fast procedure. (I’ve had one for the last 1 1/2 years). It lasts for three years and tells doctors (and you) what’s going on in your heart 24/7.
Today your doctors are much more likely to “catch” and document your irregular heartbeats.
Dealing with PVCs: We’re most grateful to Cecelia for describing how Dr. McClennen fixed her PVCs which are a major issue for some people with A-Fib.
Maybe the key to ablating PVCs is no sedation or conscious sedation rather than general anesthesia. (I’ll try to get more info on Dr. McClennen’s methods of ablating PVCs.)
Learn about sharing your A-Fib story.
Return to: Personal A-Fib Stories
If you find any errors on this page, email us. Y Last updated: Friday, October 16, 2020
2020 AF Symposium Challenging Case: 75-Year-Old, A-Fib Increases, Develops Bradycardia, 12-sec Heart Pause
2020 AF Symposium: AF Management
Challenging Case: 75-Year-Old, A-Fib Increases, Develops Bradycardia, 12-sec Heart Pause
by Steve S. Ryan
One of the most interesting sessions at the AF Symposium is the “Challenging Cases in AF Management: Anticoagulation, Arrhythmic Drugs and Catheter Ablation for AF” where leading doctors discuss very frankly their most difficult cases that year.
While several cases were discussed, here I summarize just one case.
Dr Eric Prystowsky
Patient History: 75-Year-Old Female
Case presented by Dr. Eric Prystowsky, St. Vincent Hospital, Indianapolis, IN
Dr. Prystowsky described the case of a 75-year-old female with A-Fib of at least three years duration. Before she came to Dr. Prystowsky, she was on Sotalol 40 mg 2/d and aspirin.
She was doing fine until a few months before when her A-Fib attacks became more frequent and with a more rapid rate. She also developed bradycardia and had a 12-second pause in heart beat.
Pacemaker and Pericardial Effusion: She had a pacemaker installed (but not by Dr. Prystowsky). During the implanting of the pacemaker, she developed a pericardial effusion (bleeding from the heart into the pericardium sac). She was not on anticoagulants.
Two weeks after implanting the pacemaker, she felt lousy with recurring palpitations.
Treatment by Dr. Prystowsky
Flecainide added: Dr. Prystowsky put her on flecainide 100 mg 2/day. She had slightly elevated blood pressure. She was also on aspirin, metoprolol, and Atorvastatin (to lower blood pressure by treating high cholesterol and triglyceride levels).
The patient had repeatedly been offered a catheter ablation, but she declined each time.
Reset Pacemaker: The pacemaker was controlling her atrium 93% of the time. Her Ejection Fraction was 55%-60% (a good range).
Dr. Prystowsky reprogrammed her pacemaker to change her AV interval. He stopped the aspirin, and put her on apixaban (Eliquis) 5 mg 2/d. He ordered a stress echo test to check her heart.
She felt better for 5 days.
Moderate Pericardial Effusion; Medications Adjusted
The patient then developed a moderate (“significant”) pericardial effusion.
Dr. Prystowsky stopped the apixaban (probably the cause of the pericardial effusion). Because she still had some symptomatic episodes of A-Fib (although much better), he then increased the flecainide to 150 mg.
Contributing Role: Referring to the cause of the patient’s pericardial effusion, Dr. Prystowsky faced the fact that “I did it.”
She experienced bad side effects with the increased dosage of flecainide. He put her on 100 mg 3/day to reduce the side effects.
The patient had repeatedly been offered a catheter ablation, but she declined each time.
Minimizing Pacing; Medication Adjusted
The patient’s ventricular pacing produced a wide QRS which Dr. Prystowsky said “worried the hell out of me.” He tried to minimize the pacing she received.
A CT scan revealed that her pacemaker incisions were fine, and that she had no more pericardial effusion. He re-started apixaban. She felt great.
He wound up putting her on amiodarone 200 mg which she tolerated well (previously she didn’t react well to Sotalol).
Dr. Prystowsky’s Lament
He described what he called his “shpilkes” index (Yiddish for anxiousness). When he talks to his fellows, “If you go home and worry about your patient at midnight, you ought to re-think everything.”
One Year Later and Lesson Learned
A year later she came in complaining of palpitations. Her pacemaker revealed that she only had 2 minutes of A-Fib in six months. Dr. Prystowsky told her, “I can’t do better than that.”
Dr. Prystowsky told the attendees that he would never again put a woman of her age on flecainide 150 mg.
He wrote me that it’s been over a year, and the patient is doing great.
If you find any errors on this page, email us. Y Last updated: Saturday, May 2, 2020
Return to 2020 AF Symposium Reports
A-Fib Drug Therapy: If We’re Sick, Just Take a Pill, Right?
In the US, we’ve been conditioned to think, “if we’re sick, just take a pill”.
When you have Atrial Fibrillation, anti-arrhythmic drug (AAD) therapy is certainly better than living a life in A-Fib. It can be useful for many patients.
And according to Dr. Peter Kowey, Lankenau Heart Institute (Philadelphia, PA), while anti-arrhythmic therapy is not perfect, it can improve quality of life and functionality for a significant percentage of A-Fib patients.
P. Kowey MD
Dr Kowey is an internationally respected expert in heart rhythm disorders. His research has led to the development of dozens of new drugs and devices for treating a wide range of cardiac diseases.
He cautions, though, that A-Fib anti-arrhythmic drugs are just a stopgap measure. The problem is they don’t deal with the underlying cause. And are seldom a lasting cure for A-Fib.
The Trade-Offs of Anti-Arrhythmic Drugs
In our article, Eleven Things I Know About A-Fib Drug Therapy, Dr. Kowey writes:
“An anti-arrhythmic drug is a poison administered in a therapeutic concentration. Like most meds, anti-arrhythmic drugs, (AADs), are a trade-off between the unnatural and possible toxicity with the power to alleviate our A-Fib symptoms.”
Did “an anti-arrhythmic drug is a poison” set off alarm bells for you?
In general, anti-arrhythmic drugs are toxic substances which aren’t meant to be in our bodies―so our bodies tend to reject them.
For more, see our full article with Dr. Kowey’s insights, Eleven Things I Know About A-Fib Drug Therapy. It’s based on his 2014 American Heart Association (AHA) Scientific Session presentation.
Look Beyond the Typical AAD Therapy
Today’s anti-arrhythmic drugs have mediocre success rates (often under 50%).
Beyond AAD Therapy
Many patients often experience unacceptable side effects. Many just stop taking them. And when they do work, they tend to lose their effectiveness over time.
According to Drs. Irina Savelieva and John Camm of St. George’s University of London:
“The plethora of antiarrhythmic drugs currently available for the treatment of A-Fib is a reflection that none is wholly satisfactory, each having limited efficacy combined with poor safety and tolerability.”
These drugs don’t cure A-Fib but merely keep it at bay. Most Atrial Fibrillation patients should look beyond the typical antiarrhythmic drug therapy.
See our Treatments page to learn more about Medicines or ‘Drug Therapies’ for A-Fib.
Answering Your Questions About A-Fib Drug Therapies
Since the beginning of A-Fib.com, we have answered thousands of patient’s questions—many times the same questions. Perhaps the same questions you may have right now.
For unbiased information and guidance about medicines and drug therapy treatments, see our page of questions and answers. You’ll find explanations, resources and advice for the most frequently asked questions by patients and their families. Go to FAQ A-Fib Treatments: Medicines and Drug Therapies.
Tony Rejects Drug Therapy: Says to Ask Questions, None are Stupid
Tony Hall, Evansville, IN, was 54 years old when he develped Atrial Fibrillation in January 2014. After confirming his diagnosis at the hospital, he wrote:
“I sit in the passenger seat feeling like a pet heading to a kennel. Suddenly things are different. I no longer have that “healthy as a horse” attitude.”
He started drug therapy. Then came a cardioconversion, but that didn’t keep him in normal sinus rhythm for long. He was in and out of A-Fib, and by August was in persistent A-Fib.
Learning His Treatment Options
Tony didn’t passively accept everything he was hearing from doctors and others.
He and his wife, Jill, read as much as they could and critically waded through the information they found. (I’m continually amazed at how much mis-information there is about A-Fib on the internet and in the media.)
5-months post-ablation, Tony and Jill after 10K race.
After doing his research, educating himself about treatment options and learning what his health insurance would cover, he chose to have a catheter ablation at the Mayo Clinic in December 2014.
During his three month blanking period, he had some sporadic fluttering and early on a couple of brief A-Fib episodes.
Off all medication and A-Fib-free, in March 2015 he completed a 10K race beating his time from the previous year by a fraction.
Becoming his Own Best Patient Advocate
Tony and Jill are great examples for all A-Fibbers of how to become your own best patient advocate. He rejected endless trials of various drug therapies. Instead he opted for a catheter ablation just shy of a year after his initial A-Fib diagnosis.
In his A-Fib story, he shares this advice to others considering a catheter ablation:
“Make sure, if you desire to have an ablation, that your reasoning is sound and that you have a good argument as to why drug therapy is not the way you want to go.
Having an ablation as front line treatment for A-Fib is not embraced by every EP, and many are reluctant to ablate until drug therapy has failed.
Be persistent and move on [to another doctor] if you are met with resistance.”
For Tony Hall’s personal experience story, see: Very Active 54-Year Old Became His Own Patient Advocate; Chose Ablation as First Line Treatment.
I Couldn’t Believe the Drugs He Was On; How to Ask Questions About Your A-Fib Prescriptions
03/15/2019 5 pm: Corrected a missing link below to the Free Worksheet, Ask These Questions Before Starting a Prescription Drug.
I received a very distressing email from a reader, Kenny, who was worried about his prescribed medications. He wrote that he just had a cardioversion a week ago and is back in A-Fib (unfortunately that’s not uncommon). Alarm bells went off in my head when I read:
“My doctor just prescribed me amiodarone 200mg, 4x a day…I’m a little concerned about the amiodarone and all the side effects!”
“I’m also on Digoxin…Xarelto and aspirin… .”
“I can’t get my doctor’s office or doctor to call me back! Reluctant to start amiodarone until I can talk to someone!”
Drugs Therapies Concerns
Ding, Ding, Ding! I am deeply concerned for him. The doctor prescribing these drugs is in internal medicine, not a cardiac electrophysiologist. While Kenny and I continue to exchange emails, here’s some highlights from my first reply:
• Amiodarone is an extremely toxic drug, and this dosage is 4x the normal dose.
• You must get a second opinion ASAP! (consult a cardiac electrophysiologist)
• Digoxin is also a dangerous drug not normally prescribed for A-Fib patients.
• It’s very unusual to prescribe both Xarelto and aspirin.
Time to Change Doctors? And lastly, I wrote him that if your doctor or his office isn’t calling you back, that’s a sign you should look for a new doctor (don’t be afraid to fire your doctor). You need good communication when you’re in A-Fib and trying to find a cure.
I’m glad Kenny reached out to me so we can get him on the right A-Fib treatment plan for him and his treatment goals.
Ask These Questions Before Starting a Prescription Drug
Download the Free Worksheet
Before starting any prescription drug for your Atrial Fibrillation, you should ask what it’s for and why you should take it.
Download our free worksheet, ‘10 Questions to Ask Before Taking Any Medication’ and use as a guide to ask these questions of your doctor or healthcare provider, and note their responses:
1. Why am I being prescribed this medication?
2. What are the alternatives to taking this medication?
3. What are the side effects of this drug?
4. Are there any precautions or special dietary instructions I should follow?
5. Can it interfere with my other medications?.
6. How long before I know if this drug is working?
7. How will I be monitored on this drug? How often?
8. What happens if this drug doesn’t work?
9. What if my A-Fib symptoms become worse?
10. If I don’t respond to medications, will you consider non-pharmaceutical treatments (such as a catheter ablation)?
Research and Learn About Any Prescription Drug 
You can do your own research about a specific medication and if it’s the right one for you.
An excellent prescription database is the U.S. National Library of Medicine Drug Information Portal. (For an example, see the page on Warfarin [Coumadin].)
Decision Making Time
Your research and the answers to these 10 questions should help you decide about taking a new prescription drug. Remember, it’s your heart, your health. Taking medications is a decision you should make in partnership with your doctor.
Note: File your completed worksheets in your A-Fib binder or file folder to use for future reference and follow-up.)
“Do Not Use This Product” Warnings on Decongestants: Which are Safe for A-Fib Patients
by Steve Ryan
First published Dec. 2017. Last updated: August 19, 2020
It’s cough and cold season, and millions of cold sufferers are reaching for an over-the-counter (OTC) decongestant capsule or nasal spray to clear a stuffy nose.
As an A-Fib patient, did you notice these over-the-counter decongestants often contain a warning such as:
“Do not use this product if you have heart disease, high blood pressure, thyroid disease, diabetes, or difficulty in urination due to enlargement of the prostate gland, unless directed by a doctor.”
What does this warning mean for patients with Atrial Fibrillation?
Decongestants, Heart Disease and A-Fib
When you have a stuffed up nose from a cold or allergies, a decongestant can cut down on the fluid in the lining of your nose. That relieves swollen nasal passages and congestion. (In general, an antihistamine doesn’t help with this symptom.)
The Problem: When taking a decongestant, heart rate and blood pressure go up, the heart beats stronger, blood vessels constrict in nasal passages reducing fluid build-up. In general that’s okay for most patients.
But not for patients with high blood pressure, heart disease or, specifically, Atrial Fibrillation. Decongestants cause the blood vessels to shrink and blood pressure to rise. Perfect conditions that can trigger or induce an episode of their A-Fib.
Another concern for A-Fib patients is that some over-the-counter (OTC) medications can interact with the anti-arrhythmic medication they’re taking.
Check your Cold Medicine: The main active ingredient in many decongestants is pseudoephedrine, a stimulant. It is well known for shrinking swollen nasal mucous membranes.
To find out if your cold medicine contains a decongestant, start by reading the label. You can lookup the ingredients of any OTC medication at Drugs.com. Just search by product name or active ingredient.
In addition, you can consult your pharmacist who can check the label of a medicine and let you know if it’s safe for someone with atrial fibrillation and/or high blood pressure.
Drugs.com makes it easy to check the ingredients of any OTC medication, just search by product name or active ingredient.
OTC Decongestants to Avoid: Some OTC decongestants tablets, capsules and nasal sprays to avoid if you have atrial fibrillation include:
• AccuHist DM® (containing Brompheniramine, Dextromethorphan, Guaifenesin, Pseudoephedrine)
• Advil Allergy Sinus® (containing Chlorpheniramine, Ibuprofen, Pseudoephedrine)
• Advil Cold and Sinus® (containing Ibuprofen, Pseudoephedrine)
• Sudafed (pseudoephedrine)
• Afrin and other decongestant nasal sprays and pumps (oxymetazoline)
Phenylephrine: a Safe Substitute? Maybe. A substitute for pseudoephedrine is phenylephrine. In general, phenylephrine is milder than pseudoephedrine but also less effective in treating nasal congestion. As with other decongestants, it causes the constriction of blood vessels and increases blood pressure.
There is anecdotal evidence that products with the substitute phenylephrine might be less of a trigger for A-Fib than products with pseudoephedrine. Products with phenylephrine:
• Sudafed PE Congestion tablets
• Dimetapp Nasal Decongestant capsules
• Mucinex Sinus-Max Pressure and Pain caplets (Sue Greene writes that she has used Guaifenesin (Mucinex) for years which has never put her into A-Fib, 2/15/19. Lompocsue(at)yahoo.com.)
Decongestant-Free Products: These tablets, capsules and nasal sprays are decongestant-free and safe for patients with Atrial Fibrillation (They are marketed for those with High Blood Pressure):
• Coricidin HBP line of products (Chlorpheniramine)
• DayQuil HBP Cold & Flu (dextromethorphan hydrobromide)
• NyQuil HBP Cold & Flu (dextromethorphan hydrobromide)
• non-medicated inhalers such as Vicks VapoInhalers (Levmetamfetamine)
What About Antihistamines?
Antihistamines reduce the effects of histamine in the body which can produce sneezing, runny nose, etc. Though they can lessen your symptoms, some can aggravate a heart condition, or be dangerous when mixed with blood pressure drugs and certain heart medicines.
Antihistamines can be dangerous when mixed with blood pressure drugs and certain heart medicines.
Heart-safe Antihistamines: Compared to decongestants, antihistamines are often better tolerated by people with A-Fib. Some heart-safe antihistamines that can help with a stuffy nose from a cold include:
• Claritin tablets (loratadine)
• Zyrtec tablets (cetirizine)
• Allegra tablets (fexofenadine)
• Chlor-Trimeton (chlorpheniramine)
Non-Drug Alternatives for Cold Relief
If you want to avoid medications altogether, you can try a variety of things to clear your head.
Breathe Right nasal strips may help you breathe better at night. Use saline nasal spray (like Ocean or Basic Care) to help flush your sinuses, relieve nasal congestion and curb inflammation of mucous membranes.
A steamy shower or a hot towel wrapped around the face can also relieve congestion. Drinking plenty of fluids, especially hot beverages (like chicken soup), keeps mucus moist and flowing.
Recommendations for A-Fib Patients
Antihistamines and decongestants can give much-needed relief for a runny or congested nose. But A-Fib patients should pay attention to the warnings for heart patients. Here’s some products and procedures to consider:
Decongestant-free: Look for decongestant-free products (e.g. Coricidin HBP, DayQuil HBP Cold & Flu, NyQuil HBP Cold & Flu and Vicks VapoInhalers).
One possible exception are those decongestant products with the active ingredient phenylephrine (e.g. Sudafed PE, Dimetapp and Mucinex Sinus).
Heart-safe antihistamines: You can try one of the heart-safe antihistamines (e.g. Claritin, Zyrtec and Allegra).
Drug-free alternatives: Try drug-free substitutes (e.g. Breath Right nasal strips, saline nasal spray and a steamy shower).
The best advice for you and your A-Fib: Always consult your cardiologist or EP. Ask what’s the best option for your stuffy nose or allergies. And ask about interactions with your other heart medications (especially if you have high blood pressure).
References
• Don’t let decongestants squeeze your heart. Harvard Health Publishing, Harvard Medical School. March, 2014. https://www.health.harvard.edu/newsletter_article/dont-let-decongestants-squeeze-your-heart
• Atrial fibrillation: Frequently asked questions. University of Iowa Health Care. Last reviewed: December 2015. https://uihc.org/health-topics/atrial-fibrillation-frequently-asked-questions
• Wieneke, H. Induction of Atrial Fibrillation by Topical Use of Nasal Decongestants. Mayo Clinic Proceedings , July 2016, Volume 91, Issue 7, Page 977. https://doi.org/10.1016/j.mayocp.2016.04.011
• Terrie, YC. Decongestants and Hypertension: Making Wise Choices When Selecting OTC Medications. Pharmacy Times, December 20, 2017. https://www.pharmacytimes.com/publications/issue/2017/december2017/decongestants-and-hypertension-making-wise-choices-when-selecting-otc-medications
Medical Marijuana: A-Fib Patients Offer Personal Experiences
Due to the increased use of medical marijuana in California and other states, we should soon be getting more data on marijuana’s effects on Atrial Fibrillation.
Several readers with A-Fib have emailed me to share their experiences and observations with marijuana. There seems to be a lot of interest every time I write about this topic.
How about you? I’d love to get more first-hand feedback from A-Fib users. Please email me.
First-Hand Experiences: A-Fib and Medical Marijuana
Jim, an A-Fib patient, has kindly shared his personal use of marijuana and how it helps him. He has tried various meds, cardioversion, and had a failed ablation. He owns his own business in California and is under a lot of stress.
♥ JIM: “Because of all of this, I was having trouble sleeping and was getting very stressed out. But instead of taking something pharmaceutical, I turned to medical marijuana. It changed my life. I come home at night, have some marijuana edibles, and the stress goes away. I sleep wonderfully at night, waking up fresh and ready for another day.
I told my doctor who understands. He says that marijuana edibles shouldn’t have anything to do with A-Fib, and that I can continue to take them.”
On the other hand, John writes that:
♥ JOHN: “99% of his A-Fib attacks occurred while under the influence of marijuana.”
And others add their experiences:
♥ JONATHAN: “I tried a tiny bit of brownie for the first time since being diagnosed with A-Fib (occasional episodes). It was OK until about two hours later. I went into A-Fib and, a bit later, came the closest I ever have to blacking out. I don’t think it’s for me anymore.”
♥ WILLIAM: “The A-Fib ablation has been very successful, except the two times that I went into A-Fib after smoking marijuana. I’m a lifelong recreational marijuana smoker, also smoke to relieve the pain from six surgeries on my right arm. Both times that I’ve gone into A-Fib since my last ablation have been after smoking marijuana. After the latest episode I’ve quite smoking marijuana because of the evidence that it can lead to A-Fib.”
♥ SCOTT: “I am currently 55 years old and have been through 15 cardioversions due to A-Fib. I smoked marijuana pretty much daily and noticed that, when I smoked, my heart rate went up. So, I stopped smoking altogether. Since quitting smoking marijuana 7 years ago, I have not had a single case of going into A-Fib. I’m positive that the two are related.”
Scott added that he also stopped drinking which helped. He used to drink a six pack daily.
PODCAST: Marijuana—Good, Bad or Ugly for Patients with A-Fib?
For my most recent report about A-Fib and Marijuana, listen to my Podcast with Travis Van Slooten, publisher of LivingWithAtrialFibrillation.com. (About 18 min. in length.) Includes transcript.
Marijuana—Good, Bad or Ugly for Patients with A-Fib?
With Steve Ryan and Travis Van Slooten (18 min.)
Why am I Angry at Some Doctors Treating Atrial Fibrillation Patients?
I can’t tell you how angry I am at cardiologists who want to leave their patients in Atrial Fibrillation.
It doesn’t matter even if a patient has no apparent symptoms. Just putting a patient on rate control meds and leaving them in A-Fib can have disastrous consequences.
Silent A-Fib Discovered During a Routine Physical
Discovered during routine exam
I corresponded with a fellow who had just found out he was in “silent” Atrial Fibrillation (no symptoms).
I told him he was very lucky (and should buy his doctor a present in gratitude). His doctor discovered his A-Fib during a routine physical exam. If his silent A-Fib had continued untreated, he might easily have been one of the 35% who suffer a debilitating A-Fib-related clot and stroke.
I would normally commend his cardiologist, but his doctor just put him on the rate control drug, diltiazem, and left him in A-Fib.
That is so wrong for so many reasons!
Rate Control Drugs Don’t Really “Treat” A-Fib
Rate control drugs aren’t really a “treatment” for A-Fib. Though they slow the rate of the ventricles, they leave you in A-Fib.
They may alleviate some A-Fib symptoms, but do not address the primary risks of stroke and death associated with A-Fib.
Effects of Leaving Someone in A-Fib
A-Fib is a progressive disease. Just putting patients on rate control meds (even if they have no apparent symptoms) and leaving them in A-Fib can have disastrous consequences. Atrial Fibrillation can:
• Enlarge and weaken your heart often leading to other heart problems and heart failure.
• Remodel your heart, producing more and more fibrous tissue which is irreversible.
• Dilate and stretch your left atrium to the point where its function is compromised.
• Progress to Chronic (continuous) A-Fib often within a year; Or longer and more frequent A-Fib episodes.
• Increase your risk of dementia and decrease your mental abilities because 15%-30% of your blood isn’t being pumped properly to your brain and other organs.
What Patients Need to Know
For many, many patients, A-Fib is definitely curable. You don’t have to settle for a lifetime of “controlling” your Atrial Fibrillation.
Normal Sinus Rhythm: The goal of today’s AHA/ACC/HRS A-Fib Treatment Guidelines is to get Atrial Fibrillation patients back into normal sinus rhythm (NSR) and stay in sinus rhythm.
Unless too feeble, there’s no good reason to just leave someone in A-Fib (see note below).
Don’t let your doctor leave you in A-Fib. Educate yourself. Learn your treatment options.
Always Aim High! No matter how long you’ve had A-Fib, you should aim for a complete and permanent cure. Shoot for the moon, as they say, and you’ll find the best outcome for you and your type of A-Fib.
5-Year CABANA Trial: Compares Catheter Ablation with Antiarrhythmic Drug Therapy
The catheter ablation procedure for Atrial Fibrillation has been around for 20+ years.
In a randomized controlled trial, the 5-year CABANA study is the largest to compare the A-Fib treatments of catheter ablation (PVI) and antiarrhythmic drug therapy (AAD).
CABANA stands for Catheter Ablation versus Antiarrhythmic Drug Therapy.
CABANA Trial Design
Worldwide, 2,204 patients with new onset or undertreated Atrial Fibrillation were randomized between two treatments: catheter ablation (PVI) or antiarrhythmic drug (AAD) therapy. Patient participants were followed for nearly 5 years.
Patients details: Many patients had concurrent illnesses with Atrial Fibrillation: cardiomyopathy (9%), chronic heart failure (15%), prior cerebrovascular accidents or TIAs (mini-strokes) (10%).
Over half of participants (57%) had persistent or long-standing persistent A-Fib [i.e. harder types of A-Fib to cure].
Drug details: Antiarrhythmic drug (AAD) therapy was mostly rhythm control (87.2%), some received rate control drug therapy.
Anticoagulation drug therapy was used in both groups.
CABANA Trial Results
There was no significant difference between the two arms in the primary endpoint of the trial (the composite of all-cause mortality, disabling stroke, serious bleeding, or cardiac arrest), which occurred in 9.2% of patients in the drug group and 8% of patients in the ablation group (hazard ratio 0.86, CI 0.65-1.15, p =0.303).
Crossover a Major Problem: Many in the AAD therapy arm decided to have a catheter ablation instead (27.5%). And some in the ablation arm decided not to have an ablation (9.2%). [One can not blame patients or their doctors for making these life-impacting choices.]
The problem arises when so many of the AAD therapy arm cross over. In the primary endpoint “intent to treat” group, those who wound up having an ablation were still included in the ADD arm. Whereas when researchers looked at actual “treatment received”, the CABANA results showed catheter ablation was significantly better than drug therapy for the primary endpoint (a composite of all-cause mortality, disabling stroke, serious bleeding or cardiac arrest). [See Additional Research Findings below.] Mortality and death rate were also significantly better for catheter ablation.
Additional CABANA Findings: Ablation vs AAD Therapy
▪ Catheter Ablation significantly reduced the recurrence of A-Fib versus AAD therapy.
▪ Catheter Ablation improved ‘quality of life’ (QofL) more than AAD therapy, though both groups showed substantial improvement.
▪ Catheter Ablation patients had incremental, clinically meaningful and significant improvements in A-Fib-related symptoms. This benefit was sustained over 5 years of follow-up.
▪ Catheter Ablation was found to be a safe and effective therapy for A-Fib and had low adverse event rates.
Take-Aways for A-Fib Patients
Ablation Works Better than Antiarrhythmic Drugs: Rather than a life on antiarrhythmic drug therapy, the CABANA trial and other studies show that a catheter ablation is the better choice over antiarrhythmic drug therapy.
In an editorial in the Journal of Innovations in Cardiac Rhythm Management, Dr. Moussa Mansour, Massachusetts General Hospital, wrote about the CABANA trial:
“It confirmed our belief that catheter ablation is a superior treatment to the use of pharmacological agents, and corroborates the findings of many other radomized clinical trials.”
Lower Recurrence: What’s also important for patients is the lower risk of recurrence of A-Fib versus AAD therapy.
Reduced Ablation Safety Concerns: Ablation significantly improved overall mortality and major heart problems.
Immeasurable Improvement in Quality of Life! Perhaps even more important for patients on a daily basis, catheter ablation significantly improved quality of life.
Don’t Settle for a Lifetime on Drugs
Over the years, catheter ablation for A-Fib has become an increasingly low risk procedure with reduced safety concerns. 
(Ablation isn’t surgery. There’s no cutting involved. Complication risk is similar to tubal ligation or vasectomy.)
An ablation can reduce or entirely rid you of your A-Fib symptoms, make you feel better, and let you live a healthier and longer life (for people who are older, too). A catheter ablation significantly improves your quality of life (even if you need a second “re-do ablation” down the road).
For many, many patients, A-Fib is definitely curable. Getting back into normal sinus rhythm and staying in sinus rhythm is a life-changing experience, as anyone who’s free from the burden of A-Fib can tell you.
See also: Does a Successful Catheter Ablation Have Side Benefits? How About a Failed Ablation?
We Need You
Encourage others
with A-Fib
click to order.
A-Fib.com top rated by Healthline.com since 2014
