clots

Hello. New to the affibers forum. Have had afib for about four years with about maybe 12 to 16 episodes per year (I am going to start keeping track of them from now on). Three years ago I had a monitor in place for a month and zero episodes). At my last appointment to the cardiologist he said basically there is nothing he can do except to say that I will have more episodes. He was right in that regard. So I am not taking a blood thinner because I refuse to pay well over $600 for a three-month supply and the generic versions are still not available. Except Rivaroxaban is here but only at 2.5Mg. The standard dose is 20Mg. with Exalta. I consider this a conspiracy. I am scared of Coumadin/Warfarin. Is there really a five-time chance of a stroke during these episodes that are mentioned in the commercials or is it a scare tactic? Am I rolling the dice here? Some episodes last like twelve hours with heart rate about 133. Hard to sleep with afib also. I can occasionally notice when my heart triggers and if I inhale a deep breath and slowly exhale it will go away. But not always. I just do not know what to do at this point.

Someone will reply with more expert advice, but it seems apparent you should find a new cardiologist.

Even I know a cardiologist telling you there is nothing they can do is simply unacceptable.

Quote
stahoo
I consider this a conspiracy. I am scared of Coumadin/Warfarin. Is there really a five-time chance of a stroke during these episodes that are mentioned in the commercials or is it a scare tactic? Am I rolling the dice here? Some episodes last like twelve hours with heart rate about 133.

It's not a conspiracy, it's not a scare tactic, and yes, afib does increase your stroke risk by about 5 times. You are absolutely rolling the dice. And there's no reason to be afraid of warfarin. Millions of people have taken it for decades without harm. It just needs to be monitored.

And what you haven't been told but need to know is that heart rate of 133 will, if allowed to continue too long, eventually weaken your heart and lead to heart failure. You can't just let that continue. Also, the more episodes of afib you experience, the more it actually changes your heart and makes you more likely to experience even more afib. It's called remodeling, and it explains the old adage "afib begets afib."

I don't know what sort of cardiologist would tell you there's nothing that can be done but you need to find another one ASAP. And you need to specifically look for one who is an electrophysiologist (EP). That's a cardiologist who has additional training in treating abnormal heart rhythms.

We might be able to help you find one if you tell us what part of the country you live in.

The 'five times' risk is what appears in the literature and it's empirically derived from polling thousands of cases over the years. Basically, those experiencing AF routinely or full-time appear five times more frequently in presentations for thromboembolic events than does the general population.

As Carey has pointed out, uncontrolled and sustained AF leads to 'remodeling' of the heart's substrate and structures. The mitral valve can prolapse eventually due to the strain between it and the two competing vessels contracting chaotically. Collagen and fibrosis begin to appear in the muscles themselves, and enlargement of the left atrium and even of the ventricle below it can take place. All of these compromise the heart's efficiency. Ablation is the 'gold standard' of care now for AF, and there won't be a better time in the disorder's progression than 'as soon as you can get it.' Each day, week, that passes in AF makes the disorder more difficult to ablate, but also to treat in general. Sooner rather than later.

RIsk % really depends on your Chads2Vasc score. If a doc hasn't done so, do it for yourself. The other thing to look into are on-demand protocols, where you take a med for a period of time if your episode lasts for a certain period of time. Then you take the anticoagulation med for a defined period (I would not use warfarin for this purpose) .

Something else to look into is a script for an on-demand med like flecainide or propafenone, if appropriate for you. You take a loading dose of the med at the beginning of an episode and it may shorten your episode. I've done this with my infrequent episodes since 2004. with flecainide My median conversion time is around two hours (though it varies). Here is the seminal paper: [pubmed.ncbi.nlm.nih.gov]

What is your age?



Edited 3 time(s). Last edit at 08/02/2026 12:41AM by GeorgeN.

I have seen enough stroke victims to know that I do not want to have to deal with that as a possibility, regardless of cost. Lots of good advice above, don't ignore it.

25 years of afib history for me. Two successful ablations, and now down to a couple of afib episodes per year since my last ablation 6 years ago. I am on Eliquis because of a pulmonary embolism a couple of years ago (no source found for the clots), so I will be on Eliquis for the rest of my life. I don't take it for afib, but with an occasional episode, why not.

Is there really a five-time chance of a stroke during these episodes that are mentioned in the commercials or is it a scare tactic?

Maybe. But let's not give it a name. The five times chance of stroke does not mean you will necessarily have a high risk of stoke. That's because it's a relative risk.

For example, if your relative risk is very small, say 0.5%, a fivefold increase only brings their absolute risk to 2.5%, meaning you still have a 97.5% chance of not getting one.

So, in making that decision, I found it most useful to focus on and compute absolute risk and so did my cardiologist, who put both risks on a chalk board for me a number of years ago. So even though my relative risk might have been 5 times higher, we both decided that my absolute risk did not warrant anticoagulation at that time.

Since then, a lot of research (OCEAN and ALONE-AF) and some ongoing (REACT-AF) on this topic. The new factor being considered more than before is Afib burden, the amount of time you're in Afib. So Afib burden plus your CHADS risk score, give you and your EP something to work with.

But that aside, what struck me about your post is that your doctor seems to have said, nothing more to do. Is this an EP, or a general cardiologist? Either way, you need to see an EP who will offer you some options. Be it antiarrythmic medications or an ablation, assuming you qualify.

Afib is very treatable these days and maybe the best way to resolve your understandable aversion to anticoagulation, is to focus on getting rid of your Afib.

Jim



Edited 1 time(s). Last edit at 08/02/2026 04:33PM by mjamesone.