I think I am have been misdiagnosed

I am so sorry you are going through this and I hope you can find a doctor who agrees to explore whether med-induced problems might be an issue. Has anyone discussed your CHADS score (stroke risk) with you? Sounds like you would be a 3, like me. I am also 73.

Glad your testing all looks good!

Ten years ago I had my first afib episode with heart rate above 190. It lasted maybe 2 hours. I approached a fire truck at a stop light and they treated me at the side of the road with diltiazem! Then ambulance to ER. Drama!

I went to a cardiologist who wanted me on blood thinners. I was 63 at the time and my CHAD score was, I believe, 1. I declined the medications. I knew that beta blockers lowered my blood pressure too much (I had tried them for PVC's at menopause). He prescribed one and I didn't take it. He later prescribed fast acting diltiazem "as needed" (pill in a pocket).

I had another episode a year later and the hospital cardiologist told me to "just go home and forget it happened." That is how different cardiology advice is!!

Meanwhile the first cardiologist, after 5 years and once a year episodes, told me that he thought I had been right and that they "overmedicate" people. If I had followed his prescription I would have been on a beta blocker and a blood thinner for the past 10 years!

Last summer during a stressful time I had three short afib episodes in two months- an uptick. I saw a teaching hospital cardiologist who was alarmed and wanted me to see an electrophysiologist about an ablation. She said my afib was getting worse.

It wasn't. But I appreciated her concern. I got in with the electrophysiologist who looked at my one yearly (on average, sometimes even every two years) list of episodes and told me that if he had done an ablation on me, he would consider it a success with that low frequency. He told me did not think I should take flecainide (unless I was super anxious about afib), no beta blocker, and continued with "pill in a pocket" diltiazem as needed for an episode. No daily meds.

I always go to the ER because my heart rate goes up close to 200, and I have low blood pressure so treatment with diltiazem can make it go too low. They give me a bolus in the ambulance and then a drip in the ER. So far I have self-converted.

I have always told doctors I am open to blood thinners and just want to wait until absolutely needed. I have indeed been concerned about clots with longer episodes, especially one that went 7 hours (the rest of mine are under 2 hours). One hospital put me in the ICU due to bp and after the afib ended at 7 hours, they did an echocardiogram to check for clots. But that is unusual.

I have been requesting "pill in a pocket/ blood thinners for a long time and that wonderful electrophysiologist prescribed short term Eliquis as needed- finally!! I can take them if an episode is longer than 5 hours, for a month, or if an episode is shorter, take them for a week. He kind of left it up to me.

I don't know your situation's details and am only sharing my story. You can draw whatever conclusions fit your situation. I recommend a book entitled " The AFib Cure: Get Off Your Medications, Take Control of Your Health, and Add Years to Your Life " by Day and Bunch. I was already doing a lot of the things they recommend. Thanks to afibbers.org. I drink low sodium V-8 for potassium, take calcium and magnesium, don't eat after 5 or 6, never recline after eating, and sleep on my right side. My episodes have always been in the evening or in bed.

Hope this helps!

ps My first cardiologiist agreed when I said that I understood there is more liability if he doesn't prescribe vs when he doesn't. As long as he offered and I declined on the record, he was free from liability concerns and didn't mind if I declined. You have a legal right to decline meds 🙂

Thanks for your comments. I agree that it is necessary to take control of your own medical issues.

There never was any doubt or issues with the fact that I had Afib, Years ago I was having episodes… maybe one or twice a year. Over time it became closer together. I told a good many doctors thru the years, but heart monitors never caught it. It was becoming once every couple weeks, then every week, then a doctor saw it for herself, caught it on ekg.

No contest to all that. It is the whole adventure in “heart failure” I question.

Sorry to hear you’re having a hard time with your medication. Advise not to change anything with your medication until you see a physician. And yes, if you are left with doubts concerning your health care, you would probably benefit from a second opinion.

@katiekateny I misunderstood since you said "for the first time":

"Last October, for the first time, had an Afib episode while a doctor was watching. "

So you meant it was the first time the doctor caught it, not the first time you had afib.

Do you have a Kardia or smart watch so you can show doctors the frequency, or have you done a month long patch monitor?

Meds can surely slow things down but it would require consultation with a doctor you trust to make these decisions. Due to the misunderstanding cited above, I withdraw my comments!

This might put some light on the 'heart failure' marker maze for you:
https://www.journal-of-cardiology.com/article/S0914-5087(11)00219-X/fulltext
There is little danger in withdrawing one drug at a time, or adding...one...drug at at time, and letting it run for several days to ensure nothing changes, or that a desired change begins to take place. With heart arrhythmia, really only ventricular tachycardia is the most serious one that must be managed right away...five minutes ago.

Naturally, you don't do this in isolation, but in concert with your GP or a prescribing specialist so that he/she can tell you how to monitor yourself or how he/she will do it. They prefer real-time feedback if possible, even from such things as smart wearables like the Galaxy watch or the Apple equivalent.

Did all those conceivable tests include a polysomnography in a sleep lab? Gotta ask, even though you said '...every conceivable..'.

A pulmonologist cleared you of sarcoidosis, or other chronic conditions?

Finally, as windyshores avers, doctors go by rules of thumb or by empirical recipes when they prescribe, or by the pamphlet that they read when someone pops into their offices with a new miracle drug just approved by the FDA or by Health Canada. It is common for people to get too much of a 'great thing'.

The end of June I got a watchman. The TEE was done 2 weeks ago, I have seen the results. Everything is healed, no issues, heart is normal, valves etc. normal normal normal.

I am going to ask the EP to take me off plavix, flecainide and metoprolol I have zero risk factors for blood clot after getting the watchman. So, let’s see if my symptoms of heart failure disappear with these drugs. Does that sounds like a reasonable suggestion….or a lunatic patient ?

Sounds reasonable to me and @gloaming's suggestion to withdraw one medication at a time seems prudent. If you tell your cardiologist that you want to try this, maybe they can give guidance on the best order, or a pharmacist can (I think pharmacists are underused!) but of course stay in touch with the doctor and do any monitoring necessary.

I do always remember what @gloaming said, that ventricular arrhythmias are the ones that are most dangerous.

Hope you have good results!

Since it was the EP who has taken up giving me scripts for those 3 drugs…all involved with the Afib, he is the one to ask. He will also see the result of the TEE. This is the Doc my regular cardiologist calls the rhythm section.

I’ll wait till I have made that transition to revisit what all those “clean” and normal results on all the other test.

Yes I was cleared for everything by the pulmonologist, the sleep study revealed my RLS, but nothing more.

Well.....at least that all is positive. No apparent defects or co-morbidities. 😀

Stopping all meds suddenly sounds like a dream to most of us. However, to see the effect one is looking for, it must be more methodical (albeit always following the presciber's instructions). It's the same advice we give to people seeking help with their apnea control prescriptions using PAP therapy. Make one minor adjustment, and then try three successive nights at that new setting for pressure, or relief of pressure during exhalation. Depending on what turns out, that may be enough, or it may make things worse. Try another adjustment, three successive nights, etc. With medications, since some have enormous bio-availability, such as with amiodarone, which takes up to 15 weeks (!!) to be completely eliminated, a more patient approach should be taken. I don't know what all you are taking routinely, but one or more might benefit from a full week or even two of trial. At a time.

A pharmacist might be helpful too. I think when coming off medications it is good to know the half life, and also whether a taper is needed.

Your first post indicated that afib was witnessed "for the first time" by primary care, so didn't realize you have an EP. Your history is longer and your care more complicated than first thought.

I hope you can get to the bottom of the situation as soon as is safely possible.