How about a little GOOD news!

An incredible success story in our fight against Atrial Fibrillation (AF)

by Gemita - 2021-09-11 19:46:18

Hello TLee,

Well can we start believing that our pacemakers can be valuable tools against an arrhythmia like AF or at least help us to live more comfortably with it.  That is a truly amazing result and I am so pleased for you after all your struggles.  I think you can be incredibly proud of yourself.  You never stopped questioning, wanting to know the truth about your AF.  You courageously accepted the reality of your condition, before taking complete control and reducing your AF to 1%.  Now who would have ever thought that was possible when you first posted?

Can you share with us the medication you take for AF and dosage and any lifestyle changes you have made?  Oh and what is your Base Rate set at?  I can imagine your EP didn't want to make any changes to your settings or medication. 

I too have had similar success with AF with the help of my pacemaker.  I hope other members will be encouraged by your post. Just wonderful news and so well deserved

Wonderful!

by arent80 - 2021-09-11 23:20:46

So happy to read your good news! May it continue to improve each and every day! 

More info

by TLee - 2021-09-13 11:20:49

I am not well-acquainted with all the terms used on the form that is posted to my chart (and no one has EVER gone over that with me, so hmmm). It appears that 60 bpm is the lower setting on my pacemaker, and my resting rate does seem to hover just above that most of the time. I found it odd that I seem to have noticeable symptoms of a-fib mostly when I am at rest, just before going to sleep. The dr explained that this is the time a lot of people report feeling it more, probably because just being still & having no distractions means more focus on what the body is doing. Makes sense. 

I have been taking Tikosyn (250mcg x 2) for around a year now. I never could say for certain if it made a bit of difference to the arrhythmia. In fact, I've asked several times if I might just do without, but the answer is always no. For me, the "magic bullet" was Metoprolol tartrate (50mg x 2). I started at half that dosage & almost immediately felt a change, but monitoring showed a-fib was still "poorly controlled", so the dose was increased. I did have some side-effects at first, mainly heartburn/reflux (yuck), but that has gone. I also take Eliquis to ward off strokes, and so far there has been no talk of my not needing it .I am not completely pacemaker-dependent.

I try to walk every day--maybe I should describe it more as wandering, as I don't go terribly fast or terribly far, but I do enjoy it. I try to have a mostly heart-healthy diet, but I go off the rails on occasion. Most recently I have become nearly vegetarian, mainly because meat just doesn't appeal to me anymore. I try to keep a good protein level through higher-protein foods or a shake now & then. I still have my 2 cups of coffee in the morning, & don't do decaf. I used to love a craft-brewed beer now & then, but alcohol seems to disagree with me, so, sadly, that is (mostly) out.

I am a poster child for the phrase, Everything in moderation. I exercise, I don't "work out"; I eat a healthy diet, unless someone puts a pizza in front of me; I limit caffeine, sort of; I don't drink alcohol, unless I see a really interesting brew... Balance in all things, right? 

I Think You're Doing All The Right Things!!

by Marybird - 2021-09-13 12:20:29

Hi TLee,

Your medical issues sound so similar to mine ( think that's true for lots of us), though the battle with afib began more recently for me. I also use metoprolol to keep the heart rate under control and think keeping the heart rate under control goes a long way in alleviating the symptoms. I've also found metoprolol to be very effective in that regard- in my case the dose is 150 mg/day ( 1 1/2  50 mg tabs 2x/day), and I also take diltiazem ( 360 mg/day) for heart rate control and also for high blood pressure. Like you, the pacemaker keeps my heart rate from tanking with these meds, and allows me to take enough meds to be effective in controlling the heart rate. I don't take any antiarrhythmic drugs, but recently started taking Eliquis ( the cardiologist called me to come into the office after they'd gotten increased afib alerts from my pacemaker monitor, handed me an official diagnosis of afib and a prescription for Eliquis).

You mention you're also taking Tikosyn, this is an anti-arrhythmia drug which is reportedly very effective in keeping your heart in a normal sinus rhythm, and I'm guessing this may be what has actually decreased your afib burden.  Though it sounded as though your heart still needed some help in maintaining a normal rate- enter the metoprolol!

Glad your symptoms with those drugs seem to be minimal. I've have very few side effects, sometimes a little tiredness a couple hours after I take them, but it's mild and I think a small price to pay for the benefits.

I'm sure you were told, as I was, that a healthy life style, including diet, exercise and minimal alcohol would help to decrease the incidence of afib.  It's not always easy to keep that going, especially at the times we're not feeling our best, but I don't think the benefits of these lifestyle activities can be overemphasized, they really do help! So we do what we can, and keep moving. I also have high blood pressure which can be a bear to control sometimes ( it's hereditary, my dad, and at least two of my siblings have had it since we were young adults) and the exercise goes a very long way ( along with the meds, and avoidance of stress as much as possible) in controlling that.

Like you, I have my coffee in the morning ( my husband makes it strong!), not decaf. But I've read a couple articles from Medscape, and Cardiology sources that they're finding that caffeine may not be the trigger for afib they assumed it would be. Though I guess that, like everything else, varies with the person.

And the exercise. Maybe you know better than I did in this regard, but I always felt as though my exercise wasn't really adequate as with these meds no matter what I did I couldn't get my heart rate up to the "target" range for my age ( around 130 or so). I was lucky to get it to 100 and ran the risk of getting into an afib attack if I tried for higher rates. I commented on this to the cardiology PA I saw earlier this year, and he explained that the heart rates won't go up with the meds, as he said " we don't want them to go up", and said the heart rate was sort of "boxed in", with the pacemaker keeping the heart from going too low, and the meds keeping it from going too high. Which of course, explains what they're aiming for in control of afib. He said you go for exercising as long as you can- ie, longevity in lieu of target heart rate. Kind of said moderate exercise to me, and that is what I have aimed for.

Sounds like you're doing things right, and they're working for you. Many kudos, and continued good health to you!

Mary

Tikosyn is a heavy weight medication

by Gemita - 2021-09-13 13:43:52

Thank you TLee for the additional information.  As a matter of fact you sound quite like me too when you say “I found it odd that I seem to have noticeable symptoms of AF mostly when I am at rest, just before going to sleep”.  That can happen to me.  As we drift into sleep the heart rate naturally falls from its daytime values when we are active, to its lowest minimum set pacemaker values and this falling heart rate, for me at least, can sometimes trigger ectopics and then Flutter or AF.  My EP told me that I have bradycardia induced arrhythmias, allthough since my Base Rate was raised from 60 bpm to 70 bpm it doesn’t happen so much. 

Even though my heart rate cannot fall below the set minimum Base Rate, when I get ectopics I certainly feel as though my heart rate is pausing, allowing more significant arrhythmias like Flutter and AF to re-surface.  When I check my heart rate using my blood pressure monitor, it inaccurately records a bpm in the 40s range although from the pausing ectopic beats it actually feels like this and I can feel awful.  

To be honest my anti arrhythmic medication, Flecainide, really wasn’t helping and became pro arrhythmic after several years.  Partly my fault because initially I didn't want to take a beta blocker with Flecainide.  This would have protected me from the potential pro arrhythmic effect of Flecainide.  Because of Flecainide, I developed Flutter as well.  A beta blocker is usually recommended to protect us from this happening, as well as being useful to control our heart rate.  My EP wasn’t happy when I eventually asked if I could stop Flecainide.  That is when I first noticed my AF episodes reducing, clear evidence of the pro arrhythmic effect of Flecainide (although I had been on Digoxin too).  My EP eventually agreed that Flecainide was not helping control my AF.  Now on only low dose Bisoprolol, my control of AF is the best it has ever been.  Doesn't make sense, does it.  Sometimes more isn't the way to go as you are discovering.

I cannot speak for Tikosyn which is I believe a more “heavy weight” medication than Flecainide, but I see you are not on the highest dose.  In your case it is hard to know how well it is performing, but in view of your noticeable improvement/success with Metoprolol, I wonder if you would be able to slowly reduce Tikosyn without any ill effects.  But you are doing so well at the moment.  Yes you definitely need your Eliquis.  That and Metoprolol are the most essential of your meds I would say.  It only takes a brief run of AF to put us at considerable stroke risk without anticoagulation.  

Yes right, balance in all things.  Life is about living and enjoying it while we can.  Like Mary says, “You’re doing all the right things”.  Unfortunately alcohol, caffeine and chocolate products are out for me. They are most definitely AF triggers.

Great news!

by Kpflma - 2021-09-13 14:56:39

Thanks for sharing good news with us TLEE!

😍

Good News

by Stache - 2021-09-13 18:20:15

It's great to hear some good news for a change.  We all have our own issues to struggle with.  Hearing good news lifts all of our spirits and I can sure use some more good news more often.

Awesome!!!

by MinimeJer05 - 2021-09-13 23:35:25

We may not know each other, but this post is awesome and I'm so happy for you!! Sometimes dealing with our own struggles and seeing everyone else struggle on the forums makes it hard to see the light and embrace the positive. 
 

someone on here told me that the people with no issues generally don't post, so it's hard to remember that there are people out there living just fine with a PM and no complications. 
 

your post makes me excited and happy for you I am glad you're feeling good and seemed to have unlocked the correct mix of drugs and lifestyle to life happily and without complications. 
 

your post also gives me hope in knowing that maybe my current feelings and issues might too be able to be addressed with the right balance of meds and dosage. I will remain hopeful, because if one of us can achieve success, than that just might mean we all can someday soon!

congrats again!

jer

Good to hear

by Tulp - 2021-10-13 22:57:02

Thanks for the good news.

Is good for everyone