Anyone else in afib 100% of the time?

[JudyMarieC]

After an ablation, several cardioversions and numerous medications, my pacemaker indicates that I have been in afib 100% of the time since last March. I'm on digoxin (which keeps me from feeling every skip and thump), metoprolol and Xarelto. I feel terrified for the future and discouraged that all the interventions on my afib journey have led to this. If anyone else in this group is dealing with afib 100% of the time, how do you cope both physically and emotionally?

[bmandel]

I may be wrong but my understanding is the pacemaker doesn’t stop AFib it controls your heart rate it won’t let you heart go to a very fast beat depending on how it’s set

[JudyMarieC in reply to bmandel]

I received my pacemaker due to sick sinus syndrome. It keeps my heart rate from going below 50 but doesn't do anything for a high rate. It has a setting to attempt to override afib but it was never successful in doing so.

[Jaws66]

I'm in permanent afib, and take Verapamil to slow my heart. You need to speak to your specialists to see if they think you need different medication, and because your symptoms have changed.Personally, I don't find permanent afib as much of an issue - I know how my heart behaves, and what I can/can't do. More certaintanty, less worry.

Good luck !

[JudyMarieC in reply to Jaws66]

Thank you for your response.

[captainKFF in reply to Jaws66]

Hi, what is your heart rate with verapamil and without it?

[Jaws66 in reply to captainKFF]

When I take it, it slow to about 50ish at rest. It gradually goes up to about 80ish. I take two tablets in the morning, then one mid afternoon, to have a fairly even day.

However.... I can exercise once I've taken it - I still run 5k+ regularly. Without it, my rate goes close to 200 with a moderate short jog.

[BobD Volunteer]

Provided that rate is well controlled and ypu are anticoagulated permanent AF has no long term risk factors . In fact many find it more acceptable since the the body learns to accept this as normal and there are no terible switches between AF and NSR.

[JudyMarieC in reply to BobD]

Thank you, Bob. That's very reassuring.

[Dorchen]

I am in permanent afib controlled by Digoxin and Bisoporol. Always tired x

[Fastbeat in reply to Dorchen]

I am the same as youDorchen,had AF for25 years,but permanent since 2017

[JudyMarieC in reply to Dorchen]

Yes, the fatigue is hard to deal with.

[Desanthony]

Yes I am in permanent AFib but my Docs have not yet seen the necessity of giving me a pacemaker. All I take is an anticoagulant as my heart rate is low with my normal resting rate at 55 and when I am exercising I wear a chest strap type heart monitor and try and ensure that my heart rate doesn't go about 120 during exercise (or if it does not for long)- as advised by my physio and cardiac nurse. I am fine. I go to the gym at least 3 or 4 times a week and do all the things I always have done - maybe a little slower and I do take more care when lifting heavy things. The great thing is that I don't have to worry about what is a trigger as there really isn't one. So I can continue to do all the things I used to do in moderation.

You need to discuss your medication and fears with your doctor and it may be that you need a change in medication. My wife's elderly Uncle had a pacemaker and AF for over 20 years and walked to the shops and back every day about 2 miles with a very long steep hill to walk down and then back up with a bag of shopping and had no problems and lived until he was 93 when he died from pneumonia after having a hip replacement.

[JudyMarieC in reply to Desanthony]

Thank you for responding. I do think that my medication may be causing my fatigue and shortness of breath. I'll definitely discuss this with my doctor.

[Desanthony in reply to JudyMarieC]

Things like bisoprolol caused fatigue and breathlessness for me it may help if you take your rate control/beta blocker or calcium channel blocker medication at night which would hopefully mean that you would sleep through the worst if the side effects and feel ok in the mornings. Worth a try.

[JudyMarieC in reply to Desanthony]

Good idea - thank you.

[Jaws66 in reply to Desanthony]

There are a wide range of medications available, so don't hesitate to speak up if you are uncomfortable with side effects. Keep communicating with your specialists; the more info you give them, the more they can help.

[Ppiman]

My elderly friend, Philip. has had permanent AF for very many years, but without tachycardia (i.e. no heart racing), and he has been fine throughout.

Steve

[JudyMarieC in reply to Ppiman]

Good to know - thank you!

[Thomas45]

I am in permanent AF. It is asymptomatic as yours also appears to be as you learnt from your pacemaker. I take only an AntiCoagulant. The AF doesn't affect me emotionally or mentally.

[JudyMarieC in reply to Thomas45]

Thank you. I'm hoping that, at some point, I can discontinue some medications and just stay on my anticoagulant.

[Spoiler]

I cannot imagine being in permanent afib at a controlled rate and some with very little symptoms, apparently that is the key according to what others have said.. When I go into afib it is a uncontrolled rate of 140-160, absolutely horrible. I have a pacemaker, take metoprolol, warfarin, and flecainide. I have had one ablation, it has helped in respect to now I have been able to convert back without a cardioversion, I have had 17 in 7 1/2 years. My persistent afib may last from one minute up to two days, but now converts back. When it hits dread glooms over, how long is it going to last???? Controlling the rate has been a major challenge, I envy those that can carry on, what a blessing. My question is, are you not a candidate for a cardioversion until maybe your medications or another ablation is possibly considered?

[BobD Volunteer in reply to Spoiler]

If a person has permanent AF there is little point in attempting cardioversion as this has been shown to fail, other wise the AF would not be permanent. Just to correct you, your AF is paroxysmal not persistent from what you describe. With persistent AF events lasts longer than seven days or needs cardioversion to revert. If it reverts on its own inside seven days it is still considered paroxysmal.

As I mentioned above, the lack of the traumatic switches from AF to NSR does make permenent AF much easier to cope with and many many people are quite unaware that they have it, sometimes only discovering when the stroke hits them.

[JudyMarieC in reply to Spoiler]

I've had several cardioversions, the last 2 in June, 2021. Both only put me into NSR for a few minutes. An ablation is out of the question due to "scar tissue" leading my EP to suspect that I had had afib for a long time before it was diagnosed. I had episodes of irregular heartbeat starting in my 40s, but in spite of seeing several cardiologists over the years, it was never diagnosed. I'm now 74. I completely understand what you are going through with persistent afib. I hope things get better for you.

[Spoiler]

I was told after my ablation by the Dr. He was surprised to find I had a lot of scar tissue and he remarked at that time that was probably why I did not revert back without a cardioversion. I always convert quite easily, the first one lasted 20 months, but I had also been started on propafenone I am improved just not without lengthy episodes, if I am at work when it starts, um…. That does it because of the rate not being controlled easily.

[Paulbounce]

Been in afib now for about 4 months.

Your body does adjust but I just want to rest most of the time - could be the med's. Another CV is on the cards but who knows when ?

How do you cope ? You have to - mind over matter. Easy to say (I'm going though it) but it's the only way.

Paul

[JudyMarieC in reply to Paulbounce]

You're right, Paul. Mind over matter. Thank you.

[Paulbounce in reply to JudyMarieC]

Good luck Judy - you'll crack this I'm sure

Paul