Living with Atrial Fibrillation: What are Your Experiences?

Posted by yeb @yeb, Sep 1 11:54am

I’m 74 and have just been diagnosed with chronic atrial fibrillation. My pulse rate usually stays between 75-100 and I’m taking 5mg of Eliquis twice daily. My cardiologist says there are no good meds for this type of Afib. I’m wondering if I should consider cardioversion, ablation, or just live with it and stay on the blood thinner? Anyone have experience living with AFib long term?? Thanks!

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@jomack25

I had Afib while sleeping when I was in the hospital after a 20' fall, cracked my head open and unknown until later, had bleeding ulcers resulting in a loss of 1/2 of my hemoglobin. With only one Afib event the cardiologist gave me 400 mg of Amiodarone and 250 mg. of Dilitazem. If you are prescribed Amiodarone talk to you doctor at length. The side effects are pretty bad and after 11 months the drug was discontinued since my levels of thyroid, liver and heart were more and more elevated after every blood test. After 11 months the drugs were discontinued, my liver and heart levels were down but my thyroid was damaged. In January 2024 I was prescribed levothyroxine since my thyroid would not recover. A side effect of the Amiodarone caused hypothyroidism which is one of the many side effects. So, just advice from my own experience. Every drug your doctor prescribes make him discuss every detail with you so you have the information. I did not until recently, when I saw my blood tests through a portal that was sent to me by the diagnostic company. It shocked me to read the results as my organ levels climbed and although, it was too late, I learned now that doctors overprescribe, don't follow-up in a timely fashion, do not discuss the issues you may be experiencing and dismiss your concerns. I had advocates for me during this time frame, but one thing we all did that went found was totally wrong. We accepted the doctors decisions and not one of us questioned the mediations. I mean, why would we? We thought he would do "no harm" and trusted him as we do all the doctors that he knows what he's doing so to question the toxicity and side effects of the mediations prescribed never entered our minds.

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I agree 1000 percent JOmack. I learned what you are saying many years ago. The only thing I would edit is, you said for the doc to discuss the side effects. Most doctors do not want to be questioned, and they take the drug salesmen's recommendations. You can ask him to tell you, but YOU need to CONFIRM it YOURSEF. Very simple. Google - What are the side effects of bla bla med. Don't waste your time or money until you do. And many people like me, who rarely take meds (none for me) can have severe reactions. A doctor gave me a prescription for a tiny pill, and I asked him if it would cause a problem, and he said NO, it is tiny. Well, I tool ONE HALF of the TINY pill and felt like was in a space ship going to the moon. Scared me. THEN a cx-worker told me the same happened to him, but didn't tell me as did not want to scare me.

I have a friend whose doc told her to lose weight and then gave her a med that made it impossible. Another doc told her the med makes you gain weight. She had been eating celery and lettuce etc and could not lose.

One doctor gave me a med and told me it was natural. After feeling weird, I googled and it was nothing but chemicals. He lied.

That is just a small percentage of my doctor stories. I could write a book. Everyone needs to take responsibility for their diet, their health habits, do not believe all you are told. Listen to your body's reactions to anything.

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@lindy9

I agree 1000 percent JOmack. I learned what you are saying many years ago. The only thing I would edit is, you said for the doc to discuss the side effects. Most doctors do not want to be questioned, and they take the drug salesmen's recommendations. You can ask him to tell you, but YOU need to CONFIRM it YOURSEF. Very simple. Google - What are the side effects of bla bla med. Don't waste your time or money until you do. And many people like me, who rarely take meds (none for me) can have severe reactions. A doctor gave me a prescription for a tiny pill, and I asked him if it would cause a problem, and he said NO, it is tiny. Well, I tool ONE HALF of the TINY pill and felt like was in a space ship going to the moon. Scared me. THEN a cx-worker told me the same happened to him, but didn't tell me as did not want to scare me.

I have a friend whose doc told her to lose weight and then gave her a med that made it impossible. Another doc told her the med makes you gain weight. She had been eating celery and lettuce etc and could not lose.

One doctor gave me a med and told me it was natural. After feeling weird, I googled and it was nothing but chemicals. He lied.

That is just a small percentage of my doctor stories. I could write a book. Everyone needs to take responsibility for their diet, their health habits, do not believe all you are told. Listen to your body's reactions to anything.

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Yup, and I don't know if things would have turned out differently, but he prescribed the 400 mg of Amiodarone and 250mg of Dilitiazem in the hospital. So I had no idea I was taking it and after they released me, my family followed the discharge instructions and the meds were a part of my regiment. This went on for 11 months until I was so debilitated, I did not have any quality of life. When the cardiologist in the hospital had given an appt for me to my sister, off we went a week after my discharge. He performed a nuclear test (clear) another echocardiogram (fine) a week of monitoring (fine) then 1 day of monitoring and he said "you have Bradycardia. When I called for a confirm the next appt. I asked if he had any additional information and was told my whomever answered the phone "oh, he wants to give you a pacemaker". I think I swore at her and that was the last I saw of him and his staff. But, he sent me to an electrophysiologist for follow-up so I went. He was told by my primary doctor to stop the drugs, which he did, but then prescribed Flacinide. Since I finally wised up and realized that the Amiodarone has a 1/2 life of at least 125 days so both drugs were in my system at the same time. I can't even describe what it was like and the damage is done and now my thyroid is no longer working properly. Of course, the answer is another drug being introduced to take care of the thyroid problem from the former medications and now side effects have started again. Different side effects, but still just another medication, like most that are given by doctors to patients, that create additional health problems or worsen what you had in the first place. And the answer is to just add another medication to stop the damage from the first medication, and on and on. The bottom line is that you're never the same but you can pass along your experience and hope it helps someone else looking for answers.

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Doctors have less liability, I believe, if they follow protocols for medication. In other words, less legal risk for them for prescribing vs not prescribing. We have a legal right to decline. I have declined heart meds and anticoagulants for 10 years. I get along with my MD's because I discuss it with them. So far so good but surely medications are in my future- pill in the pocket for now.

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@westernflyer

There are several beta blockers many doctors prescribe for Afib. One should have a complete electrocardiogram.
The process is quite simple. The cardiologist can show you your beating heart on the computer and measure the sizes of the atrium and/or ventricles. My atrium was slightly enlarged, but not out of the range of normal.

I have a modest case, meaning I never a problem with excessive heartbeating. I have been taking Pradaxa and Atenolon now since 2015. As most know, cardioversion (shock treatment) is often done to "set" the heart rate back to normal. Then, the most often option is the ablation process. Lots of subjective analysis with your doctor and best to seek more than one opinion. If you are near several of the best..like Mayo or Cleveland Clinic..do use their services in lieu of the doctor who refers you to another doctor in the "association".

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I will have a echocardiogram in a couple of weeks. This is done once a year and they have all been roughly the same each year.
If there are any major change then I would have to think about ablation but so far not needed.
They will also echo my legs as I have some bad veins with a little warmth and mild discomfort along with swelling.
I take a water pill "Torsimide" but only on and off. Usually they help to bring down the swelling.
My afib while always there is still mild

Glen

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Thanks Glen: For others..I meant to state echocardiogram..

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@gbear1953

Hello
I have Afib and did have the conversion which did work-for a while!
It got me into a normal rythm but only lasted 4 months.
My heart racing was the reason I found out I had Afib. My family doctor sent me to the ER but first prescribed a beta blocker. In the ER my pulse had come down but was 168 beats per minute
I saw the cardio doctor and was put on warferen but eventually it was changed to Eliquis 20mg
What is important is yearly echocardiogram's It's been around 12 years and each yearly echo returns with little change which is good.
Afib can effect the heart so it is very important to do the checking.
So now I am on Eliquis and a beta blocker for my BP and racing heart. Metoperlol is the name of the beta blocker.
Yes you and I can live a long life as long as we take the medication plus try and be healthy.
I use a machine in the gym. I am 71
I still can have ablation but at my age and the fact that my symptoms are well controlled, I choose not to.
if it gets worse I will think about it.
BTW each person is different and Afib might also have degree's of "Bad and good"

Glen

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Me ha sido muy útil leer tu comentario. Tuve un episodio de fibrilación auricular hace 2 años con latidos que llegaron a los 180. No sentí dolor en absoluto pero sentí que me moría y pedí que me llevasen a urgencias. Me internaron me estabilizaron Y por supuesto me recetaron anticoagulante 20 mg ,bisoplolol y flecanida.(Creo que esos son los nombres de los medicamentos) Tengo control muy seguido y nunca he vuelto a tener ningún síntoma. A los dos días de haber tenido esos síntomas y ya estando en mi casa, me di cuenta que no tenía ni olfato ni gusto.. el hisopado demostró que tenía covid. Y tanto al médico como a mí nos quedó la duda si la taquicardia había sido un síntoma del covid. Cosa que nunca se pudo demostrar. Pero mi salud está perfecta Y sigo con el tratamiento y haciéndome estudios y controles cada 4 meses. El dejar la medicación es una tentación ,a la que ni el médico ni yo cedemos.

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I was diagnosed with Lown-Ganong-Levine syndrome (LGL) when I was 31 years of age and was given Inderal until Corgard (nadalol) came on the market and have been taking the later for at least 35 years which is a beta blocker. I am now 81 years of age and last spring the Ep wanted to do a cardioversion but after reading several accounts of patients having had that done, I declined. So far so good and most of the time I feel great although there may come a time when I have to do something. Husband recently had a heart attack and has always been very healthy and I drive him 60 mile round trip to cardio-therapy 3 times weekly. I am not trying to dissuade anyone from following doctors advice but just saying do some "homework", research before agreeing to treatments that you don't understand. There are times in an emergency that one must bite the bullet and do something. Best of health to all.

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I have had A-Fib for about 10 years. My heart beat is usually between 104/64 and 160/80. My resperation 60-126. I had a amputation and my heart went crazy. Was up to 166. My cardiologist is sending me to a specialist to see if I can qualify for the walkman. Does anyone know anything about it?

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@importantmmatters768

I have had A-Fib for about 10 years. My heart beat is usually between 104/64 and 160/80. My resperation 60-126. I had a amputation and my heart went crazy. Was up to 166. My cardiologist is sending me to a specialist to see if I can qualify for the walkman. Does anyone know anything about it?

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@importantmatters768 are those blood pressures that you posted? Is the 166 heart rate or respiratory rate?

@gloaming and others may come along to discuss the Watchman with you.

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Hi,
I was diagnosed with a fib approximately four years ago. It all started with an EKG at my regular doctor when my heart rate showed 34 BPM.
I had been practicing yoga for the previous five years and was able to lower my heart rate by relaxing which I did during the EKG. This obviously got everybody excited so I was recommended to a cardiologist who prescribed Eliquis 5 mg twice a day.
My actual normal resting heart rate is in the upper 40s to mid 50s.
I have never felt any effects of a fib and I have been going to the gym daily for the past 18 years. Previous to that. I was an active runner and competed in 4 marathons.
So bottom line, they say I have it, but I have never felt any irregularity in my heart rate.
I am 83 years old and I do wish I could get off the Eliquis.
PS. I also take blood pressure medicine.

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