Living with Atrial Fibrillation: What are Your Experiences?

Posted by yeb @yeb, Sep 1, 2024

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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@gbear1953

Ct Scan? I do not remember having to do that. What is his reasoning or is he one of the doctors who just want you to listen and obey?
Maybe there is a good reason so take the scan if it is not a issue (I hate any scan due to claustophobia)
These days I have zero symptoms that I "feel" I just feel normal. Dr did say mine was milder than most

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My Dr. Cardiologist sent me to a Cardiac Surgeon who ordered a 3-D CTA scan, I asked "Exactly What is Involved?" He said "it's like every other CT scan you've had except they'll inject a little dye, but it'll flush out of your system within a couple of hours." (WRONG!). The "Tech" who performed the CT scan told me to drink a lot of water to flush the dye, I did Just as I was told, & the next 8-12 hr.'s I felt like I was on a "slippery slope"... it was the 6th day after the Scan before I felt Normal again. The 2nd & 3rd days I had 'brain fog' & my equilibrium was "Off", I felt Drunk. Days 4 & 5 my energy level was so low I'd be in & out of bed on about a 2 hrs rotation. Finally on day 6 mental clarity & energy came back.
I called the Cardiac Surgeons office & told them I'd had 5 miserable Days as a result of the scan, I won't be back.

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@margaretfriel

The side effects of Pharmaceuticals were So Toxic to me, they made my life "A Living Hell". After starting the drugs, for Months I'd sleep (at Best) 4-5 hours a night. I adjusted my diet to eating & drinking healthy foods & liquids ... eliminated colas & alcohol. I was never hungry, only ate because I knew I HAD TO. & I noticed after the A-Fib drugs Nothing tasted the same. After the Dr. told me to stop the Med.'s , I was sleeping 8-9 hr.s (of Good Restful sleep) again, food & beverage tastes were restored, I didn't have random shooting pain in my low back, arms, legs, & feet ... & I could think clearly, remember phone numbers, dates, names, & appointments. Family & Friends commented, asked what I was doing differently, I seemed Like Me Again! I had the energy to do common ordinary chores, & my sense of Humor returned. I could sit down, read a book, & remember on page 82 something that was on page 11. After my cognitive function began coming back & I was finding pleasure in simple things in Life, I decided I'd rather live a shorter life ENJOYING a Quality of Life, than live longer & have family & friends remember me in my last years as An Angry, Miserable Old Person (all due to my bodies inability to deal with Drugs that caused Constant Fatigue, fragmented memory, a Lot of Frustration, Anger, & Depression!) It's a choice: Quality vs Quantity!

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Amen. But you may live longer without the drugs.

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@lindy9

So, if I understand right, you had no idea of a heart problem, but an EKG said you did. Then months 2-1/2 years of horrible side effects. You stop them and are doing better. But friends and family are concerned you don't take meds!

I knew a lady who tried to please her family, and doc after doc gave her drugs, when she had been taking none and was doing fine before. In about 6 months she was dead. The doctors and the concerned family in my opinion killed her. She was my best friend and lived next door.

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The side effects of Pharmaceuticals were So Toxic to me, they made my life "A Living Hell". After starting the drugs, for Months I'd sleep (at Best) 4-5 hours a night. I adjusted my diet to eating & drinking healthy foods & liquids ... eliminated colas & alcohol. I was never hungry, only ate because I knew I HAD TO. & I noticed after the A-Fib drugs Nothing tasted the same. After the Dr. told me to stop the Med.'s , I was sleeping 8-9 hr.s (of Good Restful sleep) again, food & beverage tastes were restored, I didn't have random shooting pain in my low back, arms, legs, & feet ... & I could think clearly, remember phone numbers, dates, names, & appointments. Family & Friends commented, asked what I was doing differently, I seemed Like Me Again! I had the energy to do common ordinary chores, & my sense of Humor returned. I could sit down, read a book, & remember on page 82 something that was on page 11. After my cognitive function began coming back & I was finding pleasure in simple things in Life, I decided I'd rather live a shorter life ENJOYING a Quality of Life, than live longer & have family & friends remember me in my last years as An Angry, Miserable Old Person (all due to my bodies inability to deal with Drugs that caused Constant Fatigue, fragmented memory, a Lot of Frustration, Anger, & Depression!) It's a choice: Quality vs Quantity!

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@margaretfriel

This is in response to the 1st "Heart Rhythms" entry (above)... 4 years ago (age 83) I was diagnosed with A-Fib. Over the next 30 months, (2-1/2 years) Cardiologists & Cardiology-Physician Assistants kept prescribing various pharmaceuticals, almost immediately I'd begin to have multiple debilitating Side Effects to Each & Every One of them ... when I'd go back to the Cardiology practice, the Cardiologist or P.A. would pass me on to another P.A. or Cardiologist who would write a New Prescriptions. Finally 2-1/2 years & 7 different Prescriptions (plus 7 different Dr.'s or P.A.'s later) ... Not 1 of the Prescriptions "worked", All of them resulted in multiple debilitating Side Effects ... the Last Cardiologist I visited told me to STOP Everything & let my body find Normal. At that Same time that last Cardiologist referred me to a Cardiac-Surgeon (Medical Professional #8). He ordered a 3-D CTA, which required an injection of Vsovue 370 dye. The Cardiology-Surgeon Assured me there would be No Side effects to the CTA. He was correct about the CTA - it was the Vsovue 370 dye that was So TOXIC. That little procedure literally put me in bed for the next 5 days with Severe side effects. Over the next YEAR side effects to the dye would come & go ... from time to time my fore-arms & lower legs felt like they were Sunburn'd while my hands & feet were NUMB (essentially No Feeling ... walked like a Robot & difficulty picking-up objects such as a fork to eat). Thankfully the arm/hand & leg/foot reaction would come & go ... it wasn't Constant. The 3-D CTA was 14 months ago, it's been 3 months since the last reaction, so hopefully it's run it's course!
I'm aware my heart isn't operating Normally, I'm No longer dealing with 'Laundry-Baskets-full' of Side Effects from Toxic Pharmaceuticals, however I'm AFRAID to go back to Cardiologists ... I feel like they've done more Harm than Good. When I told my Internal Med. Dr. that the last Cardiologist told me to STOP All of the heart-Prescription Med.'s that I'd been taking, my Internist suggested I take a Low Dose Aspirin at least every other day ... maybe about 4-5 days a week ... (If I miss a day now & then, not to worry). Frankly I feel better than I've felt since initially being diagnosed with A-Fib 4 years ago. When initially diagnosed I had NOT A CLUE I had A-Fib., the EKG was just a regular part of the 2-year check-up.
A few Friends & family members say they're concerned that I'm not taking any med's for A-Fib but I tell them, "quite frankly, when I was taking those med.'s I was afraid They Might KILL ME Before the A-Fib would/could!"

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So, if I understand right, you had no idea of a heart problem, but an EKG said you did. Then months 2-1/2 years of horrible side effects. You stop them and are doing better. But friends and family are concerned you don't take meds!

I knew a lady who tried to please her family, and doc after doc gave her drugs, when she had been taking none and was doing fine before. In about 6 months she was dead. The doctors and the concerned family in my opinion killed her. She was my best friend and lived next door.

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@yeb

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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Ct Scan? I do not remember having to do that. What is his reasoning or is he one of the doctors who just want you to listen and obey?
Maybe there is a good reason so take the scan if it is not a issue (I hate any scan due to claustophobia)
These days I have zero symptoms that I "feel" I just feel normal. Dr did say mine was milder than most

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@lindy9

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

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No I might have a small soda every once in a while, don't drink coffee and I'm on a whole food regime. Via Dr. Casey Means. She is quite the lady. She has a book out called Good Energy. Pretty enlightening.

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@colleenyoung

Hi @margaretfriel, your post above went through. If you are having technical issues with the site, please contact our tech team using this form: https://connect.mayoclinic.org/help-center/#get-technical-support

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Thank You.
Peggy Friel (aka Margaret)

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@margaretfriel

This is in response to the 1st "Heart Rhythms" entry (above)... 4 years ago (age 83) I was diagnosed with A-Fib. Over the next 30 months, (2-1/2 years) Cardiologists & Cardiology-Physician Assistants kept prescribing various pharmaceuticals, almost immediately I'd begin to have multiple debilitating Side Effects to Each & Every One of them ... when I'd go back to the Cardiology practice, the Cardiologist or P.A. would pass me on to another P.A. or Cardiologist who would write a New Prescriptions. Finally 2-1/2 years & 7 different Prescriptions (plus 7 different Dr.'s or P.A.'s later) ... Not 1 of the Prescriptions "worked", All of them resulted in multiple debilitating Side Effects ... the Last Cardiologist I visited told me to STOP Everything & let my body find Normal. At that Same time that last Cardiologist referred me to a Cardiac-Surgeon (Medical Professional #8). He ordered a 3-D CTA, which required an injection of Vsovue 370 dye. The Cardiology-Surgeon Assured me there would be No Side effects to the CTA. He was correct about the CTA - it was the Vsovue 370 dye that was So TOXIC. That little procedure literally put me in bed for the next 5 days with Severe side effects. Over the next YEAR side effects to the dye would come & go ... from time to time my fore-arms & lower legs felt like they were Sunburn'd while my hands & feet were NUMB (essentially No Feeling ... walked like a Robot & difficulty picking-up objects such as a fork to eat). Thankfully the arm/hand & leg/foot reaction would come & go ... it wasn't Constant. The 3-D CTA was 14 months ago, it's been 3 months since the last reaction, so hopefully it's run it's course!
I'm aware my heart isn't operating Normally, I'm No longer dealing with 'Laundry-Baskets-full' of Side Effects from Toxic Pharmaceuticals, however I'm AFRAID to go back to Cardiologists ... I feel like they've done more Harm than Good. When I told my Internal Med. Dr. that the last Cardiologist told me to STOP All of the heart-Prescription Med.'s that I'd been taking, my Internist suggested I take a Low Dose Aspirin at least every other day ... maybe about 4-5 days a week ... (If I miss a day now & then, not to worry). Frankly I feel better than I've felt since initially being diagnosed with A-Fib 4 years ago. When initially diagnosed I had NOT A CLUE I had A-Fib., the EKG was just a regular part of the 2-year check-up.
A few Friends & family members say they're concerned that I'm not taking any med's for A-Fib but I tell them, "quite frankly, when I was taking those med.'s I was afraid They Might KILL ME Before the A-Fib would/could!"

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Your experiences and mine are why I take no drugs. We all need to take responsibility of knowing what goes in our mouth. If a doc prescribes something, YOU look it up. Google side effects of whatever medicine. If the side effects are more scary than the problem, do not fill the prescription.

I will say it again, do NOT consume ANYTHING with caffeine.

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@margaretfriel

Sorry, Can't access the Reply ... although I've filled out "Access Info." when I try, it responds with a message "Something doesn't Match" & doesn't open!

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Hi @margaretfriel, your post above went through. If you are having technical issues with the site, please contact our tech team using this form: https://connect.mayoclinic.org/help-center/#get-technical-support

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@margaretfriel

4 years ago I went to my Internist for a 2-year check-up (82 yrs. old), a Physician Assistant saw me. At the end of the appt. she sent me to "imaging" for an EKG ... diagnosed - A-Fib. The P.A. immediately put me on Warfarin, & told me to come back in a couple of days to "talk-about A-Fib". The Practice kept calling-cancelling & re-scheduling the appts., ... finally I called a local Cardiologist for an appointment to learn more about A-Fib, & see if I could get Warfarin changed, by then I was having TERRIBLE Side Effects! 3+ months had passed since the initial diagnosis. The Cardiologist advised me she couldn't change a prescription another Dr. (Phys. Asst.) ordered! I called the Dr. of Internal Medicine & told them I NEEDED an appt. A.S.A.P., they asked "Why", then said 'No appt.s available for 3 months, go to an ER"... So I got in my car, went into their office & asked for my files. I told them I would find a New Dr. if they wouldn't see me about a prescription one of their P.A.'s had ordered.
When I saw the Cardiologist I asked her to refer me to a New Internist, & we got that Prescript. changed.
Over the next 2-1/2 YEARS I was referred to 5 more Dr.'s or Phys. Asst.'s, each would change what a previous Health Professional had prescribed ... all together 7 Dr.'s or P.A.'s, 7 Diagnosis', & 7 different Prescript.'s - ALL of the Med.'s resulted in Severe Side Effects: 4 blood thinners, 2 Prescript.'s for high blood pressure & a Very Bad reaction to Iosvue 370 Dye injected for a 3-D CTA. At that point I HAD HAD ENOUGH!
Not only did I stop taking Prescripts., I've stopped going to Doctors! It Frustrates me that when I was diagnosed 4 years ago I had NO awareness (NO symptoms) of A-Fib ... 3 years of being referred by one Medical Professional to another, 2-1/2 years of dealing with TERRIBLE Side Effects to Every Medication prescribed, I'm Very Much Aware I Have A-Fib, but I Feel The Medical Profession has "bounced me around like a Tennis Ball", put me thru A Lot of Pain, Confusion, & Misery with all the TOXIC Med.'s ... My Body & I NEED to De-Tox. (find a "New Normal"?) & start all over.
When I feel I Need Help, I'm Leaving Town & going to a Major City Heart Clinic such as Rochester - MAYO CLINIC, ST. LUKES in St. Louis, or CLEVELAND CLINIC.

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Sorry, Can't access the Reply ... although I've filled out "Access Info." when I try, it responds with a message "Something doesn't Match" & doesn't open!

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