Lone Fibbers

This is my first post. I had an AF episode March 4, 2023. Spent two days in the hospital which was out of state. I had numerous blood tests, ekg, CTA, a stress test, etc. All my tests came back negative. They have no idea what set it off. I am a 67 yo female, healthy weight and active. I will admit that my blood pressure in the past has always been normal but sometimes on the high end of normal. I was diagnosed as LAF (not sure why this is an obsolete term.) I was subscribed Eliquis and Diltiazem for 30 days. I bought an Apple Watch and check my BPM and run the ECG daily. I also bought a BP machine and keep a daily diary. The results have been well within normal range. After follow-ups with out of state cardiologist and my primary care (both saying I am doing great) they want me to stay on the medication indefinately. I was starting to get side effects from the medication (feet were tingling at night, I could feel my heart beat more than usual and was a little light headed) I am a skier and hiker and did not want to be on blood thinners in case I fall or slip. After some research, I added to my supplement regimen (magnesium, etc) I also checked out what foods were good for potassium and which naturally thin your blood. Most things I already ate but did add a few more things to my diet. Was never big on salt but cutting down on sodium even more - staying away from canned soup and reading all lables. My blood pressure has never been better. After weighing the side effects, I went off both medications on May 1 and am feeling better. Today (5/9/2023) primary care said fine to get off Dilitiazem but to stay on blood thinners - scaring the bejezus out of me regarding blood clots. She wants me to stay on them at least until I am set up with a new cardiologist in my state. (that's another story) The doctors don't like when you look for alternatives to medications but I feel I must be in charge of my decisions. Not once did they ask what I ate or sodium intake. Are there anymore Lone Fibbers out there? Would love to hear from you. Thank you for listening and thank you for this forum.

A great many people report that they have all, or most, of their episodic (paroxysmal) AF when they are in bed. Presumably, much of it happens while they are asleep, so they don't know they have the episodes unless they record their HR over the course of the night's sleep. The point, though, is that ANY AF, no matter when it happens, runs the risk of having trapped blood left in the atrial appendage where it is inclined to coagulate before long. That's what you don't want. So, blood-thinner/anti-coagulant it is. For life.

Prescribing an anticoagulant is based on your Chad2 Vasc score. Since you are a female and over the age of 65 your score is two. With that score you are definitely in the category of recommending an anticoagulant. I would suggest staying with the prescribed anticoagulant until you can connect with an EP in your home state and discuss it further with them. Afib greatly increases our stroke risk and anticoagulants significantly mitigate that risk.

Hi BJS, sounds like you are doing all the right things. The bleeding risk of Eliquis is exaggerated in most people’s minds. Probably the majority of us here are on Eliquis or a similar drug and have no problems—even when we cut ourselves. It just take a little longer for bleeding to stop but nothing a little pressure won’t stop. But, if you are on Eliquis it is a good idea not to overdo it with foods and supplements known to have anticoagulant properties. It is more likely that it was Diltiazem bothering you than Eliquis.

There is an alternative to life-long oral anticoagulants—that is if it turns out that your new cardiologist (look for an Electrophysiologist rather than a general cardiologist) feels you need to protect against strokes. It is an implanted device called a Watchman—I got one a couple of weeks ago and quite a few members here have them. So far, they are looking to be as effective as drugs like Eliquis. It simply seals off the source of the clots that cause 90% of strokes—the left atrial appendage.

Quote
Carey
The ablations aren't failing; your body is simply forming new fibrotic tissue all on its own. That's why EPs have come to understand afib as an underlying heart disease known as atrial myopathy. It's also why the term "lone afib" is no longer recognized. Having afib is a form of structural heart disease, so the term doesn't make sense and misleads our thinking.

So Lone Afib is no longer applicable.

Quote
BJS
My blood pressure has never been better. After weighing the side effects, I went off both medications on May 1 and am feeling better. Today (5/9/2023) primary care said fine to get off Dilitiazem but to stay on blood thinners - scaring the bejezus out of me regarding blood clots. She wants me to stay on them at least until I am set up with a new cardiologist in my state. (that's another story) The doctors don't like when you look for alternatives to medications but I feel I must be in charge of my decisions. Not once did they ask what I ate or sodium intake. Are there anymore Lone Fibbers out there?

Hi BJS,
Whether you need anticoagulation is really a function of your CHA2DS2-VASc score: [en.wikipedia.org]
They don't count the point for being female anymore as frankangelo says.

Quote

I am a skier and hiker and did not want to be on blood thinners in case I fall or slip

The newer meds, like Eliquis, have a very reduced risk for this, as Daisy says.

One thing you may want to discuss with your cardiologist or electrophysiologist (an EP or cardio who specializes in electrical issues with the heart - highly recommended for afib) is the on-demand use of a drug like flecainide, to be taken to convert yourself very quickly (hours) if you do go into afib. See the original paper here. Note that if you weigh < 154#'s (70 kg) your max intake of flec is 200 mg/day (300 mg for those who weigh more).

b]Today (5/9/2023) primary care said fine to get off Dilitiazem but to stay on blood thinners - scaring the bejezus out of me regarding blood clots. [/b]

Perhaps it is a bit unfair for me to comment as I have never experienced any side effects from Eliquis or any of the other rate/rhythm meds that I have been prescribed-at least that I know of. I commend you for your “non-med” approach. Something I have never had the initiative to pursue. So, good for you. However, with respect to Eliquis or anticoagulants in general, I often think of a saying or adage that I first remember reading on this forum. I don’t know who to give credit to but it goes something like this: “There are some things worse than dying and one of them is a stroke.” So, as you embark on this life-long aFib journey please keep thoughts and decisions about anticoagulants at the top of your list. There’s a good reason. Best of luck.

Sorry about the bold text etc. not very good at this.

Ugh, did it again! More sorry!



Edited 2 time(s). Last edit at 05/09/2023 11:50PM by Mark.

BJS: "She wants me to stay on them at least until I am set up with a new cardiologist in my state"

Yes I would agree, but after you establish this care, I would recommend getting a professional Holter-Monitor or other 24/hr recording device from your Dr., and wear it for a week or two. If your not not getting any undetected AFIB events, then you it would make more sense to drop the Eliquis at that point. You cant get a blood clot from AFIB, if the episode was over 2 months ago, and you have been in NSR ever since. The key is determining if your aware of all of your events.

Nattokinase would be a natural alternative, but it is not nearly as effective for AFIB related clot risk. Nattokinase also is being given to help break down the cardio-toxic spike protein that is resultant from the Covid Vaccines, if you are vaccinated.

BJS: "Today (5/9/2023) primary care said fine to get off Dilitiazem"

There is a sub-division of AFIB patients that get what has been defined as Vagally-Mediated Lone AFIB. Athletes are often in this category. In this scenario, the Diltiazem may actually make things worse in regards to fomenting AFIB. Diltaizem slows down and decreases the electrical signal strength going through AV node to the Ventricles. This can accentuate an over-reactive vagal response that helps initiate an AFIB episode.

Important >>Take the Diltiazem when you have AFIB (during an episode) to help control your HR, (if necessary), then you can get off it, after you revert back to NSR.

BJS: "Not once did they ask what I ate or sodium intake"

Unless your BP is real high, NA+ probably is not the primary culprit contributing to occurrence of AFIB. Sodium restriction is not in vogue as much as it used to be, as those people with healthy kidney function, will naturally excrete excess NA+. Mg depletion is probably the most common electrolyte deficiency for athletic people with Lone AFIB.



Edited 1 time(s). Last edit at 05/10/2023 03:08AM by The Anti-Fib.

BJS,
Its so easy to drive yourself crazy trying to figure it all out... but staying hydrated, lowering calcium /sodium intake, not overdoing or over-stressing and eating only whole foods without additives and no alcohol are good places to start; then see if you have any episodes. Maybe your episode was a 'one off' as you got into some triggering food ingredients (msg, soy sauce, stimulant, etc.) or an imbalance somewhere in the categories mentioned above.

Afib can be a curse, or a blessing if it is mild enough to be our teacher, guiding us to better health and lifestyle. The book "The Afib Cure" is a great place to start for the care and understanding of your afib.
Good luck,
Jeff W

Under current guidelines the point for being female is no longer counted, so BJS is a CHADS 1 (1 point for being >65). Therefore, anticoagulation is a judgement call. Continuing to take it is obviously the safer approach because there's really not much worse that can happen to a person than a major stroke, and keep in mind that strokes due to afib tend to be more serious than from other causes.

And, unfortunately, being in normal rhythm for a long period isn't as much protection as people like to think. People with afib have suffered strokes after months of normal rhythm. Why? That's an unanswered question but it leads into the next paragraph.

Why is the term "lone afib" no longer used? It used to be in the description of this forum and you'll see it used all over the place if you look through the library or dig back in the forum a few years. The term meant afib with no accompanying structural heart disease such as valve problems, heart failure, etc. In other words, a person with an otherwise healthy heart who happens to have afib. However, in recent years electrophysiologists have discarded the notion of lone afib because afib is now recognized as a form structural heart disease in and of itself. Specifically, it's known as atrial myopathy. This atrial myopathy is progressive and it predisposes you to developing more frequent and longer lasting afib (and flutter) episodes, and it also elevates your stroke risk even if you remain in normal sinus rhythm for weeks or months. This is why rushing to get off anticoagulants is a bad idea. You're safer on Eliquis than off it.

I'm glad being 65, now CHADS 1pt, since I'm allowed taking a NACO and not paying it full price (about €5/month i.o. €85).
I was still called "lone afibber" too some years ago.