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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My mother had permanent afib and lived to almost 96 with Coumadin, blood pressure meds and diuretic.

The book "The Afib Cure" by Bunch and Day actually says, as I remember, that afib does not get worse over time, if you make certain lifestyle changes, address triggers, lose weight, control blood pressure etc. etc. I drink low sodium V-8 for potassium, magnesium, don't eat late, don't recline after eating, try to keep stress down (the hardest) and so far things haven't gotten worse after ten years of once a year or once every two years episodes with rapid ventricular response (very rapid!). I don't know what is going to happen! I have pill in a pocket diltiazem and finally got pill in a pocket Eliquis for use as needed- if ever. Things may get worse of course. I am 73 and they are going to want me on anticoagulants due to age and gender alone.

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@emo44

Yeb,
You say you have chronic Afib. Is that how the doctor described it? There are actually three types of Afib: Paroxysmal which occurs off and on, Persistent which lasts longer than seven days, and Permanent which needs to last longer than a year. So, if you are newly diagnosed you should be able to get help managing it. I, too, was in persistent Afib when diagnosed. Afib with RVR was my diagnosis. My heart rate was high. Since I see a cardiologist in the HCM (Hypertrophic Cardiomyopathy) Clinic at the Mayo Clinic, I contacted him and he wanted me to see an EP at their heart rhythm clinic. Of course that took a while to get in. So to make a long story short, I spent last summer on sever rate control drugs which didn't work. Saw the EP in July and we decided to try medication befor ablation. So, in September I spent three days in hospital to load with antiarrhythmic drug Dofetilide (Tikosyn). Neede a cardioversion to regain sinus rhythm. It has now been almost a year and except for one short breakthrough I have been Afib free. I am 80 years old and very active and feel great on this drug. If it fails, I will then probably have an ablation. There is definitely treatment if you haven't been in Afib for years. Find a good electric physiologist and travel if you need to. It is important to treat it as soon as possible. I can't say enough good about Mayo, but if you are closer to another large center, get a second opion there. Good luck and keep us posted.

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Thanks so much for all this information. I guess I have Persistent AFib since it is a constant companion. I'm new to all this--never had AFib before, just high blood pressure which is controlled by medication. I will inquire about antiarrhythmic drugs and EPs. I'm treated at UCLA in Los Angeles. Wish we had Mayo here!

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Order the A-Fib Cure on Amazon. It helped me understand the issues I am facing with my a-fib at 82 years old.
A-Fib never gets better, a-fib begets a-fib, as it states in the book. I learned my issues and better understand my options. Medication and cardio-version are usually not long term solutions. Both have drawbacks and have serious side effects. I am pursuing a pacemaker with AV Node ablation. I hope this helps everyone. A-fib is a terrible disease that can ruin / end your life prematurely. Good luck to everyone!

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@emo44

Yeb,
You say you have chronic Afib. Is that how the doctor described it? There are actually three types of Afib: Paroxysmal which occurs off and on, Persistent which lasts longer than seven days, and Permanent which needs to last longer than a year. So, if you are newly diagnosed you should be able to get help managing it. I, too, was in persistent Afib when diagnosed. Afib with RVR was my diagnosis. My heart rate was high. Since I see a cardiologist in the HCM (Hypertrophic Cardiomyopathy) Clinic at the Mayo Clinic, I contacted him and he wanted me to see an EP at their heart rhythm clinic. Of course that took a while to get in. So to make a long story short, I spent last summer on sever rate control drugs which didn't work. Saw the EP in July and we decided to try medication befor ablation. So, in September I spent three days in hospital to load with antiarrhythmic drug Dofetilide (Tikosyn). Neede a cardioversion to regain sinus rhythm. It has now been almost a year and except for one short breakthrough I have been Afib free. I am 80 years old and very active and feel great on this drug. If it fails, I will then probably have an ablation. There is definitely treatment if you haven't been in Afib for years. Find a good electric physiologist and travel if you need to. It is important to treat it as soon as possible. I can't say enough good about Mayo, but if you are closer to another large center, get a second opion there. Good luck and keep us posted.

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Sorry for all the spelling mistakes on my post. New computer and I must not hit the keys hard enough.

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Yeb,
You say you have chronic Afib. Is that how the doctor described it? There are actually three types of Afib: Paroxysmal which occurs off and on, Persistent which lasts longer than seven days, and Permanent which needs to last longer than a year. So, if you are newly diagnosed you should be able to get help managing it. I, too, was in persistent Afib when diagnosed. Afib with RVR was my diagnosis. My heart rate was high. Since I see a cardiologist in the HCM (Hypertrophic Cardiomyopathy) Clinic at the Mayo Clinic, I contacted him and he wanted me to see an EP at their heart rhythm clinic. Of course that took a while to get in. So to make a long story short, I spent last summer on sever rate control drugs which didn't work. Saw the EP in July and we decided to try medication befor ablation. So, in September I spent three days in hospital to load with antiarrhythmic drug Dofetilide (Tikosyn). Neede a cardioversion to regain sinus rhythm. It has now been almost a year and except for one short breakthrough I have been Afib free. I am 80 years old and very active and feel great on this drug. If it fails, I will then probably have an ablation. There is definitely treatment if you haven't been in Afib for years. Find a good electric physiologist and travel if you need to. It is important to treat it as soon as possible. I can't say enough good about Mayo, but if you are closer to another large center, get a second opion there. Good luck and keep us posted.

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HI,
Thanks for sharing your story. Everyone is different so work with your cardiologist to find what works for you. I got AFib, cardioverted once, asymtomatic since on Metoprolol and Eliquis. I am lucky and hope it holds out. Best wishes to you.

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@yeb

I drink one cup of decaf coffee every morning. That’s it.

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I would have a problem even with decaf. There is some caffeine in it. Chocolate? Sweets and processed foods?

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@yeb

Thanks for sharing. Is he on any medications that help the AFib? I feel palpitations much of the time. While it’s not painful, it can be uncomfortable and distracting.

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He knows he is in AFib all the time. They have tried the gamut of medications and none have worked. He was on Flecainide for quite a number of years which seemed successful however, after about eight years, he had some side effects so they took him off of that. He was on different medication’s, including amiodarone which did not keep him in rhythm. I hate to say this, but after the Covid shot is when his Afib got out of control.

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@lindy9

Are you consuming ANYTHING with caffeine even in small amounts??

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I drink one cup of decaf coffee every morning. That’s it.

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@dajasorenson

I was diagnosed with A-fib in 2008. Had a ablation in 2009 it only lasted 8 months. Tried a lot of different medications most didn't work. Had another ablation in 2017 it only lasted 8 months. They cardioverted me and it put me back in rhythm. They put me on flecainide and it did the job for 7 years. Had a episode last may when I thought I was going to pass at that point they cardioverted me went back into A-fib the next day. They put me on amiodarone 800 mg for two weeks and cut me back to 200 mg a day. I was scheduled for another ablation but have had no problems since I also take Eliquis 5mg twice a day. Amiodarone is a bad medication because it can effect the liver and thyroid have to have blood tested every six months to make sure I'm doing ok. I have a friend that has chronic A-fib but he doesn't experience any side effects. He is just on a blood thinner he just retired from the mayo clinic. I wish I had his problem when I go into A-fib I lose 60% of my energy. If you don't have that problem I would just keep taking the blood thinner.

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Thanks for sharing your story. It’s very helpful to me. Because I have chronic AFib I have no energy most of the time. My quality of life has gone downhill. I am considering cardio version but my doctor wants me to have a CT scan first.

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