Will try and make long story short: 21/2 yr of PAF, started with sotalol, cardiologist wouldnt hear my complaints so after 4 mo saw EP, who happily put me on flecainite/ metoprolol/ xarelto as needed. Only 4-5 episodes in 21/2 yr, no ER or hospitals needed, meds converted me at home.( plus life style healthier changes. I went 11 mo with no a fib until last march I had 12 hr episode( usually 3 hr) so the docs decided I needed daily meds, which Ive been taking. Other than mild fatigue, it's better than I expected, no more a fib.
Here is my ??
I really dont want to take daily meds if I dont need them, Im 65, so no issue with the xarelto, maybe even ok with metoprolol... but I dont get why I need antiarrhythmic? I asked EP if I can go back on PIP, his reply was " since you dont want ablation, you need to stay on them". I almost feel it is a bait and switch. Nothing has changed really and a lation was never the plan. My life style is ok but I am afraid I may need meds down the road
and they might not work.
Opinions please from all you a fib wise people. I know you arent medical people but you do have a lot of wisdom.
6/11/18: Update: I decided to send word to my cardiologist that EP said no to PIP but I really dont want to take daily antiarrhythmic unless I have to. I expected a big fat NO as he never liked PIP, but he said yes as long as my a fib doesnt get more than monthly. I get to stop flecainide- happy dance!!! So now Im super motivated to keep up my healthier eating ,exercise, etc. Praying my heart agrees with this plan like it did in the past💜💜💜
The important thing to remember is that AF begets AF so it is very important to try and prevent it happening or it will progress to a more persistent or even permanent state. beta blockers do not stop it. merely slow it down when it happens so you be the judge. As I constantly say to people the only right answer is what is right for you but be measured in your choice.
I guess my struggle is really indecision. Part of me says shut up and take the pills and b happy, my other side resents taking daily meds. Thanks for your input. I appreciate it greatly.
I used to take Propafenone daily and hated it, I wouldn't want to take it again. But if there was an antiarrhythmic with less side effects I might be willing. My point is, are you just unwilling to take regular meds for an occasional problem (understandable to me) or does the regular dose affect your QOL? My EP pushed for me to have my ablation on the grounds that I appeared to be nearing permanent AF, backing up Bob's point. Best wishes, these decisions are so hard!
Im thinking maybe I just need to hear from knowledgable people such as yourselves, that arent going to gain or lose any thing by sharing your opinions with me. Im a retired RN, Im apparently having trouble being the compliant patient and not the nurse😳
For me all treatments were either ineffective or proarhythmic and the side effects were worse than the afib . They are also well known to be ineffective in about 50% of patients. I would certainly not put myself through that again unless my attacks were severe and often. A word of warning, if you come off metoprolol expects some serious side-effects for a while.
I was treated for AF in 1992 but had it for years before without treatment. I do have multi conditions so not a great benchmark to set me by. I have been on permanent meds since 1992. But these have changed many times over the years! Some I am sorry to say with terrible results!
I am now on 15 Medicines a day which seem to be doing their jobs with the occasional hiccough. I would prefer to have meds every day rather than have to firefight an episode because is has not been kept under some sort of control?
I wouldn't say it's necessarily conscious "bait and switch", however what you describe doesn't sound like patient centered care with shared decision making. In fact, it sounds like my former EP who I left because instead of taking my concerns into account they simply told me what to do. It's not even a matter if the EP is right or wrong (not that there is a always a right and wrong with afib) but the fact that they aren't taking into consideration what you want.
No one here can give you medical advice, but what I know is that you are safe because you're on Xarelto. And once being safe, you have a number of options including staying on PIP. My advice is to find another EP who will listen to what you want and not just fit you into whatever protocol their office has.
Not going on permanent arrhythmic sounds very reasonable to me. It may or may not work out, but I think you owe it to yourself to give it a chance, and you owe it to yourself to find another EP who will work with you to give it a chance. After leaving my EP, I found such a doctor and it was like night and day. There are some absolutes with afib, but there is a lot of gray area and don't let any doctor intimidate you into thinking that's not the case.
Just so you know, a few weeks back my EP said similar to the effect of "if you don't want ablation then you have to take these drugs". Never was I asked how I felt about this. I shortly left that EP. My current EP is very comfortable with a PIP approach. Not saying that I'll never end up on arrhythmia meds or even have an ablation, but it will be my decision, at my time, and under the supervision of an EP who practices patient centered medicine. Not easy to find these days but worthwhile to seek out.
My cardiologist stated in the beginning he is not a PIP believer, and I respect that. What gets me is EP has been all about PIP until now. He is a University professor at a medical school and hospital, Im wondering it the powers that be are pushing their docs to do more ablations. I was so impressed with him as he really talked up life style changes 2 yr ago. I felt good about no episode in 11 mo.
Ohio State University recently posted what they pay their employees. Near the top of the list were four EPs, who each earned around two million dollars a year, half base salary, and I assume the other half for procedures such as ablation. We are talking about a multi billion dollar a year market that makes up a substantial portion of the salaries of many of the doctor's who advise us. There is another thread about the Cabana trial. Milton Packer a renowned cardiologist had some harsh words about how EPs are interpreting Cabana in a self serving manner.
That is so sad. After reading everyones posts, Ive decided to not go back to current EP. I just sent a message to my cardiologist( who never would advise PIP from the beginning)... explained my dilemma and I acknowledged his beliefs but asked him to support me in my request to at least get off the flecainide until my heart proves I need it. So, waiting for reply. If he says "no" then Im done with both. We live is a rural area so local cardiology is one group with no local competition. EP is 75 miles. I do have 2 large metropolitan areas to pick from about 200 miles away. Im no longer 100% sure I need an EP unless a fib becomes more complicated.
I love this forum!! You all are helpful, caring and I appreciate you all.
Sounds like a good plan. I understand that the 24 hour episode was longer than the others, but you've still only had 4-5 episodes in the last few years and maybe they jumped the gun changing from something that has worked in the past. Personally, I'd ask about going back to PIP only (no daily flec or metropolol) and see how that goes. I don't know what dose worked in the past to get you out of afib in 3 hours but you might ask about an increased dose if the Flecanide doesn't work right away. If that doesn't work, then maybe try Metropolol alone daily before adding Flecanide like they have done now. In other words take it step by step.
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