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Persistent Afib

farewelltoarms profile image
19 Replies

Thank you to everyone for your replies. This is the best site for info and also advice that I have found. Persistent AFib but HR controlled and stays under 100 most of the time. Now on Eliquis and switched to Digoxin .25mgm a month ago with Lopressor 25mgm/25mgm and trying to wean off Lopressor. Before I started Digoxin and was on Lopressor 100mgm/50mg got blurred vision etc. When I started Digoxin Dr. said stop Lopressor completely. When I did this HR spiked to 165 and I had to lay down and call Dr. Now on the weaning and here is my question why do I feel so unwell? Just can't name symptoms but tired, wobbly, upset stomach, heartburn etc. etc. Is this what persistent afib does. My Dr. said it is persistent and chronic and that I would just go downhill. Have been in good health my whole life (count my blessings). I have a trip planned and once I return will explore ablation but that also sounds like a whole set of new issues. Any advice is much appreciated. Everyday I wake up I feel worse and hope it will be the opposite.

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19 Replies
CDreamer profile image
CDreamer

I am so sorry you are feeling so bad and your post left me with a heap of questions. Firstly how long has AF been persistent? What speciality is your doctor? Unless an EP I would question the lack of support you have received.

What is the structure of heart like - that would mean results from scan or echocardiogram? Any other conditions for which you take meds? BP? Blood tests - liver & kidney function in particular as they would show how your body is clearing the drugs, or not, which could cause toxicity.

Persistent AF can be chronic and therefore Ablation sometimes has a low rate of success, therefore cardioversions are often given prior to ablation to see if conversion to NSR is even possible. Only THEN could your doctor say it’s a chronic condition which will cause you decline And there are even then options. Having had the drugs, 2 ablations I had pacemaker which helps my heart keep in sync and apart from getting tired (also old age) I have no drugs and felt SO much better for removing the drugs (I still take Apixaban - Eliquis to you but we have a generic form and in UK always use the generic name rather than the brand).

It’s really difficult to know what causes symptoms drugs or disease - until you stop and for me the drugs did more harm than helping - hence the pacemaker.

How hard have you pushed for treatments?

Lifestyle, especially, weight can also be a big factor.

There are a lot of variables, especially when you also have CVD as it can limit options. my experience is that to a great extent you need to become an expert on you, knowledgeable about AF and various drugs in order to ask pertinent questions of your doctor.

Don’t let them write you off! Dig deeper.

I have no experience of any of the drugs mentioned although know that Digoxin has to be used with great care and more often used for Angina than AF. I quote

The use of digoxin is limited because the drug has a narrow therapeutic index and requires close monitoring. Digoxin can cause many adverse events, is involved in multiple drug interactions, and can result in toxicity.18 Feb 2015

Hope others with experiences of these drugs will post which may further light on the subject for you.

Best wishes.

farewelltoarms profile image
farewelltoarms in reply to CDreamer

Bless you for your response. First diagnosed in November 2020 Went to hospital middle of night was in Afib in the 180s Treated for three days sent home on Dioxin, Eliquis Lopressor and cardioverted 6 weeks later. Reoccurrence September 20211 Cardioverted taken off Digoxin and placed on Multaq twice a day. Lasted till October 2023 and third cardioversion lasted only two weeks Saw electrophysiologist who diagnosed persistent permanent afib and took me off of Multaq. Said to consider PVI and the sooner the better. Did not offer high hopes for success. Cardiologist told me to increase lopressor to 100/100 but I cannot tolerate increase. See Both a Cardiologist and Internal Med. Echo initial was normal now shows moderately dialated atrium. Mild to Moderate mitral valve regurgitation. Mild aortic stenosis, EF 55%. Moview stress test in 2023 was normal. So option of ablatiion for Rhythm control or meds for rate control which I do not tolerate well

Buffafly profile image
Buffafly in reply to farewelltoarms

Lopressor is a beta blocker so I believe you are likely to feel unwell if you stop suddenly.

farewelltoarms profile image
farewelltoarms in reply to Buffafly

So will it improve weaning off not stopping suddenly over two weeks and still on 25/25

Omniscient1 profile image
Omniscient1 in reply to farewelltoarms

Best to wean off, but better to get your dosage reduced by the doc until you get a livable dosage that's not cratering your life. Other BBs are available too.

farewelltoarms profile image
farewelltoarms in reply to Buffafly

Thank you trying to wean off over a couple of weeks started at 100/50 now 25/25

Rambler398 profile image
Rambler398

Might be worth asking your doctor if your symptoms could be related at least in part to the Digoxin.

I am not a health care professional.

farewelltoarms profile image
farewelltoarms in reply to Rambler398

He said no Lopressor may be the Culpitt. Weaning off. Thank you.

Ppiman profile image
Ppiman

Looking at digoxin side effects, it sounds like this, but a heart arrhythmia can, in my own experience, affect the diaphragm and stomach area so these things are never easy to determine. Digoxin worked well for me when I had atrial flutter in 2019 but it isn't a first line drug like metoprolol, so there must be a reason you've been given it.

My experience from two friends is that symptoms from persistent AF do lessen until the mind and body become accustomed to them - but it's clear from some here that this is not always the case.

It seems to me you are having very good medical care and your doctors have done the right tests and are working through the (rather limited...) treatment options available. How are you feeling now?

Steve

farewelltoarms profile image
farewelltoarms in reply to Ppiman

wobbly blurred vision tired not as good as I could.

Ppiman profile image
Ppiman in reply to farewelltoarms

I’d mention this to your GP.

Steve

farewelltoarms profile image
farewelltoarms in reply to Ppiman

Thanks Steve

Tapanac profile image
Tapanac

goodness what a doctor saying from now on you will just go downhill. I’ve had afib/tachycardia since I was in my 30s not that anyone seemed to know this putting it down to syndrome x and I’m now 80

Please don’t let your GP upset you

All the best

farewelltoarms profile image
farewelltoarms in reply to Tapanac

Thanks for you reply. The electrophysiologist is the one that said I would go down down down. GP is looking for solutions. Cardiologist and Electrophysiologist said ablation or learn to live with it. Seems not to be an option for me.

Tapanac profile image
Tapanac in reply to farewelltoarms

Goodness me. Talk about lacking in bedside manner! I'm so sorry they had that attitude with you. I think I would be inclined to look for other cardiologists or EPs. Yes ablation does help some, but like myself it calmed, but certainly didn't help much. The one thing that did was to have a pacemaker. Covid did its best to ruin things, but not everything. I do hope you get satisfaction as anything to do with the heart is scary.

MummyLuv profile image
MummyLuv

hi there, I read in your profile that due to being persistent an ablation would not be successful for you, but you are struggling with symptoms either from the afib itself or from the medication. It is true that chances of success drop with a catheter ablation once you are persistent but they are still around 30-50%, a surgical ablation still gets very good results though, as high as mid 80s depending on the surgeon and method used. I see you are in the US, if you haven’t heard of mini maze, there is an excellent Facebook group called wolf mini maze, run by Dr Wolf’s patients and lots of experiences in there, warts and all, for you to start to learn more if you haven’t already researched it.

farewelltoarms profile image
farewelltoarms in reply to MummyLuv

I will look at Mini maze thank you do not know if they do this here in my area. Thank you

MummyLuv profile image
MummyLuv in reply to farewelltoarms

If you google mini maze there is another Facebook group with many other surgeons across the US who do mini maze.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I have been diagnosed Stroke Embolic type, rapid and persistent AF.

Persistant does not mean you will go downhill etc.

Once I was cotrolled by CCB Diltiazem 120mg AM for heart rate control

and

2.5mg BB Bisoprolol PM for BP control

with a Day 132/69. with 60s H/Rate Great

Night 47avg

Metoprolol gave me H/Rate 186 with pauses at night.

Asked for H/Specialist and she did ECHO and 24hr H/Monitor to check med changes. It was a private H/Specialist who introduced CCB Diltiazem.

Note a CCB and BB need separating hence CCB AM amd BB PM. The 120mg seems to be right taking in the AM as the PM Night H/Rate remains 47avg on the above regime.

You are on Lopressor (an ACE blocker and from the Metoprolol family).

I would have the H/Specialist to give you a 24hr H/Rate Monitor to monitor what your meds are doing.

Rapid H/Rate would give you uncontrollable sweating on exertion and extreme tiredness and fatigue.

Cheri JOY. 75. (NZ)

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