Need advice from fellow Afibbers please

I am having trouble getting straight answers from my Electrophysiologist.
I was diagnosed with Afib in 2016. I have had several small episodes and 2 episodes that lasted more than 2 months each. They admitted me for a cardioversion but it corrected when they gave me 300 mg of Flecainide.

I was on Flecainide for a few years but went off it because I just didn't feel right while taking it. I have been feeling very fatigued for the last few years but my cardiologist can't find anything to cause it.

If I over exert myself I feel extreme fatigue for days. It takes several days to recover my energy. The worst culprit is if I carry a heavy object for a long distance such as 30 pounds over 50 feet.

MY EP is putting me back on meds, this time it will be Propefenone. I start that one today.
I also have sleep apnea and am on a cpap machine.
Often I wake up during the night and feel a rapid fluttering in my chest, even though my pulse at my wrist is normal. I had a few instances of this when I was wearing the 7 day monitor, but my EP said nothing showed on the report.

My EP is suggesting an ablation. Medtronics cryoballoon ablasion. He did an EKG which showed normal rhythm. He put a monitor on me for 7 days that did not show anything abnormal, even though I felt several instances where I pushed the button to highlight what i felt was an abnormality.

My main question is can Afib cause extreme fatigue, lightheadedness, and general unwell feelings even if you are not currently in Afib?

When I over exert myself I have a several days period when, if I try to walk too fast I get lightheaded, heart pounding hard, fatigue, chest tightness. This is even when I am not technically in Afib.

I am 68 years old. I have HBP, under control with 3 meds. Have had every conceivable cardio test including nuclear stress test.

Afib has been confirmed via EKG twice.

Sister just had an ablation that helped significantly. Family history.

Can you guys shed some light on whether this is typical.

Can Afib cause extreme fatigue, lightheadedness, and general unwell feelings even if you are not currently in Afib?

Do you think the ablation will help?

Thanks!

If you are in rhythm, then I (a non doc) would look elsewhere, not afib. Is your BP low on the 3 meds? Perhaps one or more of the meds is the culprit? Have you looked into lifestyle adjustments that could possibly allow a normal BP with fewer or no meds? If you aren't in afib, then I don't see the point of putting you on a rhythm med. Perhaps taking one on-demand to convert you, if you went out of rhythm, as you did before?

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Lend27
Can Afib cause extreme fatigue, lightheadedness, and general unwell feelings even if you are not currently in Afib?

No, absolutely not. It might leave you feeling tired for a while following an episode, but we're talking maybe a day at most. Do not do an ablation, at least not yet.

I agree with George's answer: look elsewhere. Afib isn't the root of your current problem. Since you've had such extensive cardiac workups, I assume all the bad stuff has been ruled out, so what's left? The meds. What are those three hypertension meds you're taking?

Have you thought about a smart watch that monitors?

My husband got one , it will take an ECG, OTS (on the spot) but not live.

Let me get to my point. This device has helped correlate other symptoms and find out when he was likely in afib, even if it's brief. Less than five min or during sleep. When he's feeling crappy, we can look back and correlate it to other things the watch was monitoring. It's been an invaluable investment.

You will have to take the time to note these things.. I would definitely journal so you heave a record.

Point, When my husband sometimes thinks he's fine, but stressing, sleeping, drank too much coffee, yadda.. more often than not, the watch is a beneficial indicator of the underlying.

I guess the other point is, he doesn't always notice the Afib, but he does the after and it's not always caught by a device.

Just a thought...
If you're off of flecainide (you don't say if it was combined with a betablocker, which is usual) and are prescribed propafenone, I don't think it'd be better, as they are the same class of rhythm drugs, except for propafenone not requiring a betablocker.
I'm no expert, just a paroxismal afibber having been prescribed several rhythm drugs and betablockers. From my experience, rhythm drugs don't prevent from "normal" exercise, but can have some adverse effects with high intensity exercise or heavy work. Betablockers, OTOH, can disable the best athlete, even while just walking.
Aside of that, we're all different and we don't feel afib the same way. I agree with previous posters about NSR. When in NSR I'm fine, with or without flecainide. But I've low to normal BP, so the other meds you're taking are unknown for me.

Other non-Cardiac tests during the time of exhaustion. Adrenal tests? Blood tests? Sounds like something is getting depleted to fast, and it takes you awhile to recover.

As Carey said: what are the 3 BP meds???? My guess is there in lies your issues of tired weak lethargic
Taking propafanone every day??? Ummm why not pip approach. If you add propafanone to the 3 that might not be good?
T

The 3 BP meds are Irbesartan, amlodipine and carvedilol.

Here is an interesting development:
Well, I started on the Propafenone today, and my upper backache went away. Physically, I felt much better. I did feel a bit lightheaded, especially after taking my BP pills, but it was my best day in weeks.
I went out and walked 3 miles with no issues.
When I feel most tired and fatigued, I also have a upper backache. The greater the fatigue, the more intense the upper backache feels.
I also feel that my chest is heavy. These are times I feel like I’m on the verge of afib. If I push it physically, my heartbeat gets very strong and fast.
In the past year I have been to 7 different specialists trying to find the cause of the fatigue, and every test has been negative.
That’s why I returned to my Cardiologist who ran every conceivable test and all were negative. He referred me to an EP who feels it is all afib related. The afib has been confirmed via EKG multiple times, and I’ve had multiple bouts of extended afib.


What do you guys think of all this?
Thanks for your help.



Edited 2 time(s). Last edit at 07/12/2021 08:34AM by Lend27.

I do feel that my BP meds need to be re-evaluated.
I'm going to discuss with the EP at my next visit in 2 weeks.

If you're having extended episodes of AF then that certainly could be the cause. You asked originally if AF could cause fatigue when you're not actually in the rhythm, but now it doesn't sound like you know when you are and when you're not. You can solve that by buying a Kardia. The basic model is perfectly fine and you can get it on Amazon for $89. You don't need the subscription plan they offer.

The other possible culprit is the carvedilol. It's a beta blocker, and beta blockers can cause fatigue (they do for me, big time). It would be simple to test that theory. Next time you feel fatigued, stop the carvedilol for a couple of days and see if the fatigue improves.

What watch does he use?
I have an Apple Watch version 5, and I don't think it monitors all that data.
I know the version 6 actually monitors blood oxygen levels.
I may trade mine in when the new version comes out.

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Lend27
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Often I wake up during the night and feel a rapid fluttering in my chest, even though my pulse at my wrist is normal. I had a few instances of this when I was wearing the 7 day monitor, but my EP said nothing showed on the report.

I experienced the same thing when I was on Flecainide, the doctors didn't know what it was, but it stopped when I stopped taking Flecainide. It was a very disturbing.
I have read on the forum that one other experienced the same thing, but can't find the post.
Maybe Carey can enlighten us if he has heard about this strange side effect.

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Lend27
What watch does he use?
I have an Apple Watch version 5, and I don't think it monitors all that data.
I know the version 6 actually monitors blood oxygen levels.
I may trade mine in when the new version comes out.

I just upgraded to the IWatch 6 from the 4 on prime day deals because of the O2. Save your money. It rarely works. It’s keeps saying to tighten or listen the band. I don’t move my arm abd can get 2 out of 10 readings. All inaccurate. I compare with my oximeter. 10 points off. I called up Apple support snd was told it’s not always accurate. I then googled it and sure enough it’s garbage and not accurate. Unlike the great features of constantly monitoring my hr, the O2 is manual. You can save money and buy the oximeter. I have 30 days to return it.

I recommend buying the Kardia 6L and an oximeter.

You can tweak your IWatch settings to set your low and high hr notifications and turn in the afib notifications. Your 5 should work.

The Apple Watch is useless with regard to afib. It won't even attempt to diagnose anything with a rate over 120, and their support people won't discuss it with you if you've been previously diagnosed with afib. It's an expensive, useless device if you have afib.

Cheap oximeters don't seem very accurate to measure O2 saturation, but seem better displaying your AVG HB of the moment. It's often possible to have some kind of tracing on the display. It does not tell nor record anything, but it may be a more comfortable way to check your pulse and count your beats than with your fingers and a clock, especially while in bed in a dark room.
The one I have is fine doing that, the small yellow running line shows a "peak" for each heart beat, it's easy to see wether it's regular or not in many cases. PACs appear too, in the form of small secondary peaks on the running line. It's particularly clear with bigeminal PACs.
Of course, this device is nothing as serious as an EKG single lead monitor (I have my own one), but it is not useless.

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Carey
The Apple Watch is useless with regard to afib. It won't even attempt to diagnose anything with a rate over 120, and their support people won't discuss it with you if you've been previously diagnosed with afib. It's an expensive, useless device if you have afib.

Yes the watch’s diagnosis may not be accurate (tends to say AF if you are having any wonky beat) but I believe if you know what to look at by just watching your watch’s screen, you can distinguish whether you are having afib, PAC’s or PVCs. It has been my peace of mind for years.

It’s an instant reading you can do on the move vs Kardia where you have to dig in your purse for it and remain still.

I take a watch reading before the Kardia for those times I want a faster instant reading vs taking my Kardia, sitting still, launching the app, clicking “take a reading”, place the lead contacts on my knee or ankle (6L) etc . Kardia is more accurate by far but the watch automatically monitors your average hr every 7 minutes or so-even in your sleep. It’s worth something for hr and a rudimentary afib device.

You can tell if you're in afib without any devices at all. Just feel your pulse. Is it a regular rhythm? You're not in afib. Is it chaotic and completely irregular? You're in afib.

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Carey
You can tell if you're in afib without any devices at all. Just feel your pulse. Is it a regular rhythm? You're not in afib. Is it chaotic and completely irregular? You're in afib.

Yeah. I can. Even without touching anything. I'm used to the feeling in my chest. Less than six years ago, I didn't even know about afib. When I got my second episode, about 10 days after the very first one, I got it diagnosed, so I learnt what it was.
I'm very symptomatic, so I can't miss it now.

But it may be less obvious for many people. We have to learn to recognize afib. Once we know, it's easy, and we tend to forget it wasn't some time ago.

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Carey
You can tell if you're in afib without any devices at all. Just feel your pulse. Is it a regular rhythm? You're not in afib. Is it chaotic and completely irregular? You're in afib.

Or PVCs.

Afib is irregularly irregular. It's the only fully chaotic HR.
Runs of PVCs (or PACs) always have normal beats in between.

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Pompon
Afib is irregularly irregular. It's the only fully chaotic HR.
Runs of PVCs (or PACs) always have normal beats in between.

Mark was a UK afibber who provided these images of various rhythms to us maybe 15 years ago. These were captured with a recording heart rate monitor that records the length of each beat, reported in the graphs as heart rate. The Y axis is heart rate and the X axis is time. When you see a single spike up (faster), it is a PAC, a single spike down (slower & generally 1/2 the rate of the surrounding beats) is a PVC. You can also feel these rate changes in your fingers on your radial pulse. Additionally, in your pulse, the amplitude or height/strength of the pulse waveform will typically be variable in afib. You can see this waveform variability in finger tip devices (or phone apps using the camera) that show a continuous representation of the waveform. So a fingertip device, plesmograph, would show variability in the distance between peaks (beat length) and in the waveform amplitude, when someone is in afib.

[www.afibbers.org]


More details on how the recording of these graphs were done:
[www.afibbers.org]
[www.afibbers.org]

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susan.d
Or PVCs.

Actually, those feel distinctly different when taking a pulse. With ectopics, there's an underlying regular rhythm with short pauses and strong pulses either randomly interspersed or in a repeating pattern (known as bigeminy, trigeminy, etc). The key to identifying afib is that it's irregularly irregular. There's no underlying regularity at all and every beat is completely random. Once you feel that you know it's afib because there's no other arrhythmia that produces an irregularly irregular pulse. Also, with PVCs and PACs you'll feel particularly strong pulses when they occur, but with afib each pulse feels about the same.

I have little doubt I could outperform any device, even a professional-grade ECG, by simply feeling a radial pulse, and that's no special talent on my part.

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Carey
Also, with PVCs and PACs you'll feel particularly strong pulses when they occur, but with afib each pulse feels about the same.

Not in my case, as I noted above, the pulse wave amplitude in afib for me is highly variable. One time, when I was playing with breath holds to convert an episode several years ago, only had my fingers and a camera plesmograph app on my phone with me. I watched the pulse wave amplitude and peak to peak distances change as I held my exhaled breath. It was motivating to watch both change to be more regular as I continued my exhaled breath hold. As the breath hold extends, the CO2 alarm to breathe gets more intense, so it is nice to have that motivation. I ultimately held it long enough to convert the episode. I've been recently doing a lot of experiments in NSR with exhaled breath holds, both preceded by hyperventilation and no hyperventilation while recording and watching both beat to beat heart rate and SpO2. Also while seated and while exercising. At some point I will report. There are interesting data that might point to a reason for the timing of the conversions.

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GeorgeN
Not in my case, as I noted above, the pulse wave amplitude in afib for me is highly variable.

Sure, it's more variable with afib than with ectopics on top of NSR, but only if you have measuring devices. If you're simply feeling a radial pulse, the variability won't be that noticeable with afib, but with frequent PVCs and PACs it will be obvious. I'm only referring to manual palpating a pulse, not using anything involving devices.

It's so easy for me to feel afib with my carotid pulse. Radial too, but not as strong. Two seconds, and that's all it takes. I have speculated that one's body mass may play a roll in the ability to feel the heart in afib. I am lean and when it starts, it's obvious and can be confirmed with taking my pulse.

I have a friend that never knows when she is in or out of afib, but she is quite heavy and mobility is a bit limited.

We are all different.

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Carey
Sure, it's more variable with afib than with ectopics on top of NSR, but only if you have measuring devices. If you're simply feeling a radial pulse, the variability won't be that noticeable with afib, but with frequent PVCs and PACs it will be obvious. I'm only referring to manual palpating a pulse, not using anything involving devices.

I do notice variability in the pulse wave amplitude in my manual radial pulse. If the amplitude of NSR is medium, in afib I notice the pulse amplitude wave can vary between low and medium. The beat after a PVC can feel "hard" or have a high pulse wave amplitude. I'm also lean. Though I've noticed that folks who can't tell aren't limited to those with a high BMI. Mostly those who are continually in afib. I've been talking with friends who tell me they have afib, but aren't in it when we are talking. I ask permission to feel their pulse & sure enough, they are in afib.

I don't know about two seconds as Ken says, but usually four beats (name that rhythm in four beats or less). If there are lots of ectopics close together (relatively uncommon for me), it can be easier to tell the difference between afib and ectopics with one of several monitors I use.

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Carey

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Not in my case, as I noted above, the pulse wave amplitude in afib for me is highly variable.

Sure, it's more variable with afib than with ectopics on top of NSR, but only if you have measuring devices. If you're simply feeling a radial pulse, the variability won't be that noticeable with afib, but with frequent PVCs and PACs it will be obvious. I'm only referring to manual palpating a pulse, not using anything involving devices.

Checking my pulses with my fingers while in afib don't show more than slight variations in beat strength. But,
laying on my back or even on my left side, I clearly feel stronger and weaker beats (I'm skinny). EKG tracings don't show more than slight variations.
So, in my case, it seems this variation is more like a perception than a fact.