Atrial Fibrillation and long-term management with medication

Posted by AidanDunne @aidandunne, Jul 15, 2011

My Father was diagnosed with atrial fibrillation, 5 years ago and recently had his medication (soluthol) switched to a newer synthetic medication, however after 3 months his blood pressure drop to the extent that he was blue and extremely fatigued.

After numerous tests they found that the new medication even though the dosage was the same the potency was double strength, the additional side effect was a drop in insulin production.

Therefore when they realised this they switched him back but I am curious as to the long term treatment of Atrial Fibrillation via medication.?

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@realitytest

Re AFIB.

I don't (yet- if ever) have a Watchman. It's something I'm looking into to protect my eyes from my blinding wet macular degeneration. That's why the business about perpetual aspirin was such a downer. (Only a really good nearby electrophysiologist- interventional cardio said he thought I could forego it, with a mind to European studies which view the necessity of aspirin quite differently)

What IS the difference between electrophysiologist- interventional cardios anyhow? SO many types of cardiologists (just check out heart transplant specialists!)

Don't know about you, but I have no symptoms with my AFIB so have never worried about it*, especially with the Xarelto (gotten heavily discounted from Canada FWIW)
It was only the diagnosis of that nightmare eye disease that put me onto trying to get off it.

*I gather many participants here have violent symptoms accompanying their AFIB.

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Mine is dramatic, Always ambulance and hospital. Last time ICU because diltiazem lowers bp. But once a year.

Does Coumadin (Warfarin) affect the eye issue?

Can you switch anti-coagulants or do they all have that effect.

My docs all tell me now that aspirin will not help with clots. Too bad!

You are dealing with a lot! Glad your afib is asymptomatic.

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@windyshores

Mine is dramatic, Always ambulance and hospital. Last time ICU because diltiazem lowers bp. But once a year.

Does Coumadin (Warfarin) affect the eye issue?

Can you switch anti-coagulants or do they all have that effect.

My docs all tell me now that aspirin will not help with clots. Too bad!

You are dealing with a lot! Glad your afib is asymptomatic.

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Good to hear from you again.

Yes, all the anticoagulants have the same effect.

After all,
1) they basically turn users into hemophiliacs
(surely you've noticed how you bleed from minor wounds?)

2) About my blinding eye disease: it's caused by tiny abnormal capillaries which grow into the retina, in some older people. They are very fragile. When they leak, the blood (and toxic fluids from inadequate eye metabolism) permanently kill retinal cells right in the macula - i.e., destroying central vision.

Right now, they can only forestall the (groan) inevitable by fairly recently discovered chemicals which act to prevent the growth of these capillaries (and to a degree, dry them out). They reach the affected area by eye injections (no, it's no fun but not as bad as it sounds).

Within days of getting the eye diagnosis, I put 2 and 2 together - the anticoagulant effect (which is so useful against stroke risk from AFIB) and the nasty fact that it's uncontrolled bleeding which blinds people with my eye disease.

What to do? My retinologist is a dead loss in terms of honest advice concerning exploring such options ("what am I? A cardiologist?" "Do you want to have a stroke"? etc.) undoubtedly affected by liability concerns. (If he steers me even by hinting, away from anticoagulants, he might be sued by me/my family if I have a stroke.)

Anyhow, I found on my own the options to avoid anticoagulants (eg. the Watchman which seems the best), and thus have been exploring how and whether I might qualify for this surgery. (For example, people with internal bleeding can NOT take these anticoagulants , Afib or not).

Your (approx) annual hospital visit for your heart issues sound terrifying, especially (I imagine) because they just happen - i.e., no set date. (I identify with that aspect of it especially as recurrences of my retinal bleeding happen unpredictably.)
Not to mention the ambulance drama and how you must feel during this annual emergency. Sympathies!

"Funny" how people with the same condition can have such radically different manifestations and experiences!
And yet we can still help each other. At least, there's that.

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@realitytest

Good to hear from you again.

Yes, all the anticoagulants have the same effect.

After all,
1) they basically turn users into hemophiliacs
(surely you've noticed how you bleed from minor wounds?)

2) About my blinding eye disease: it's caused by tiny abnormal capillaries which grow into the retina, in some older people. They are very fragile. When they leak, the blood (and toxic fluids from inadequate eye metabolism) permanently kill retinal cells right in the macula - i.e., destroying central vision.

Right now, they can only forestall the (groan) inevitable by fairly recently discovered chemicals which act to prevent the growth of these capillaries (and to a degree, dry them out). They reach the affected area by eye injections (no, it's no fun but not as bad as it sounds).

Within days of getting the eye diagnosis, I put 2 and 2 together - the anticoagulant effect (which is so useful against stroke risk from AFIB) and the nasty fact that it's uncontrolled bleeding which blinds people with my eye disease.

What to do? My retinologist is a dead loss in terms of honest advice concerning exploring such options ("what am I? A cardiologist?" "Do you want to have a stroke"? etc.) undoubtedly affected by liability concerns. (If he steers me even by hinting, away from anticoagulants, he might be sued by me/my family if I have a stroke.)

Anyhow, I found on my own the options to avoid anticoagulants (eg. the Watchman which seems the best), and thus have been exploring how and whether I might qualify for this surgery. (For example, people with internal bleeding can NOT take these anticoagulants , Afib or not).

Your (approx) annual hospital visit for your heart issues sound terrifying, especially (I imagine) because they just happen - i.e., no set date. (I identify with that aspect of it especially as recurrences of my retinal bleeding happen unpredictably.)
Not to mention the ambulance drama and how you must feel during this annual emergency. Sympathies!

"Funny" how people with the same condition can have such radically different manifestations and experiences!
And yet we can still help each other. At least, there's that.

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One of my best friends has the same problem and has the eye injections.

What a dilemma. Cardiology needs anticoagulation for afib to prevent stroke, and Opthamology needs to prevent bleeding which will worsen the degeneration.

The Watchman makes sense. Of course you thought of it yourself! Will any doc do it for you?

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@windyshores

One of my best friends has the same problem and has the eye injections.

What a dilemma. Cardiology needs anticoagulation for afib to prevent stroke, and Opthamology needs to prevent bleeding which will worsen the degeneration.

The Watchman makes sense. Of course you thought of it yourself! Will any doc do it for you?

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Two have said they would if I get a retinologist to vet the necessity, one will bypass that requirement (the same one who would bypass the perpetual aspirin requirement.)

Question is, is he savvier and/or ,more sympathetic (or whatever), or --- less conscientious?
More research on my own...

Yesterday I found online on an ophthalmology board I somehow joined, a lecture on the pros and cons of aspirin after the Watchman Procedure. (They are doing studies in China too, but they're in the preliminary stages.)

She's even relatively nearby (2 hours or so), which is something since I live in a medical wasteland. At least, my overworked PCP just responded to my (long - so much to explain) email request for an obligatory referral.

Tomorrow, I'll try to make an appointment. (She was booking into October as of Friday).

I'll only hope my eye doesn't start bleeding again in the meanwhile.

Just to add frosting on the cake of my dilemmas, my local retinologist (whom I just met with after months, I thought to inject me), informed me he doesn't do injections on people WITHOUT ACTIVE BLEEDING.

No, this is not standard protocol but I suspect he may be acting according to some cabal of retinologists who have decided for economic reasons* to do it this way (I see plainly on line - right here on another CONNECT site - that many people have their sight saved by more patient-welfare oriented treatment. For instance at the Mayo Clinic.). They are clearly NOT only getting injections after all hell breaks loose, but prophylactically.

(All clinical trials state repeatedly, that "in the field" patients fare worse in terms of visual acuity than they do in clinical trials - WHY? Because they/we are "under-treated." )

Another challenge to (try to) protect my doomed vision and advocate for myself!

There! More than you ever wanted to know about "wet" macular degeneration.

*The shots cost well over $2000/apiece.

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@windyshores

Mine is dramatic, Always ambulance and hospital. Last time ICU because diltiazem lowers bp. But once a year.

Does Coumadin (Warfarin) affect the eye issue?

Can you switch anti-coagulants or do they all have that effect.

My docs all tell me now that aspirin will not help with clots. Too bad!

You are dealing with a lot! Glad your afib is asymptomatic.

Jump to this post

Suddenly realizing that "if aspirin won't help with clots", there's no really good reason to force patients to take aspirin forever after the Watchman!

I guess they're just erring on the side of caution in both cases: IN CASE they might help with clots (which do occasionally form after the Watchman) have them take aspirin - even though, they had the procedure to get off anticoagulants!

Likewise, don't encourage clot-vulnerable patients to count on aspirin for significant protection when it only helps REDUCE the risk.

They don't want to be stuck guaranteeing anything, least of all, as a matter of policy (for which they might be held liable).

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@realitytest

Suddenly realizing that "if aspirin won't help with clots", there's no really good reason to force patients to take aspirin forever after the Watchman!

I guess they're just erring on the side of caution in both cases: IN CASE they might help with clots (which do occasionally form after the Watchman) have them take aspirin - even though, they had the procedure to get off anticoagulants!

Likewise, don't encourage clot-vulnerable patients to count on aspirin for significant protection when it only helps REDUCE the risk.

They don't want to be stuck guaranteeing anything, least of all, as a matter of policy (for which they might be held liable).

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Interesting about the shots being given only with active bleeding versus prophylactially. Good issue to research and get a lot of MD opinions!

I wonder if 2-4 weeks of anticoagulant after the Watchman would do the trick reliably-?

You are impressive in your self-advocacy!

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I posted this in the wrong place. Not sure how that happened because I was directed via email link.

If you google "aspirin not effective against clots afib" there are many entries. Here are just two:

Aspirin monotherapy, or using aspirin by itself, was previously an option to prevent unwanted blood clots for patients with atrial fibrillation. However, further studies have shown that aspirin alone is not effective in reducing the risk of disabling stroke and it is no longer recommended. https://drafib.com/blog/blood-thinners-forafib#:~:text=Aspirin%20monotherapy%2C%20or%20using%20aspirin%20by%20itself%2C%20was,disabling%20stroke%20and%20it%20is%20no%20longer%20recommended.

About 40 percent of "a-fib" patients deemed at moderate to severe risk of stroke because of age or other conditions are prescribed aspirin alone rather than recommended blood thinners such as Xarelto (rivaroxaban) or warfarin, according to a new study…

Another heart specialist agreed. "Aspirin is not an anticoagulant and is not effective in preventing strokes in patients with atrial fibrillation," said Dr. Samuel Wann, a cardiologist at Columbia St. Mary's Hospital in Milwaukee. Wann is co-author of an editorial published with the study.
https://www.webmd.com/heart-disease/atrial-fibrillation/news/20160620/aspirin-often-wrongly-prescribed-for-atrial-fibrillation

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Thank you. They're my only eyes! (reference to your advocacy compliment. I too don't know how I got here.)

BTW I got a welcoming phone call today from the assistant to the ophthalmology professor I found lecturing online (the retinologist with special research on the use of aspirin after the Watchman Procedure).

We spoke for a half an hour (mostly me with her taking notes for her boss) and I covered everything. Because it was so complicated she said she knew Dr. Bowie would want to talk to me about my situation before seeing me, so would call me later in the week.

Wow! In 35 years in this country I've NEVER gotten a phone call from a doctor (living in this same medically backwards place). Looks like I struck gold. I can't know what the outcome of her input will be (hopefully also replacing my local retinologist as care-giver), but at least I'll get the best possible information.

And from someone who cares that much about her patients! Contrast that to the big wheel retinologist I saw at John Hopkins Cole Eye Clinic. He spoke to me (condescendingly) for at most five minutes, leaving me with more questions than I began with.

(And after a three hour drive, with a paid driver and a three months long wait!)
🙁 >:(]

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@windyshores

I just reread your post. A doctor cannot really "insist" on you taking any medication. You always have the right to refuse. And it can stay friendly 🙂

The problem seems to be that you took the beta blocker when your pulse and blood pressure were normal, so it lowered both to below normal.

If you have tachycardia, it is a good med- while you have tachycardia. It seems you would have to monitor so that when the tachycardia stops, you also stop the med- BUT you have to taper it very very carefully.

If you can tolerate the tachycardia, then you can try foregoing medication and see if it stops.

Afib is different from tachycardia itself, because of the stroke risk from clots. I have asked for short term anticoagulation and instead they did an echocardiogram to make sure I had no clots. I read a study that suggested people like us should be able to do one month of anticoagulation to deal with an episode.

I do tai chi and Reiki and try to keep stress down. It looks like you follow some of the same approaches with Mg and Potassium.

I hope your problems do not recur. I don't know why many providers don't listen about the blood pressure.

I have a Kardia to do an EKG at home. It is the size of a credit card and you put two fingers on it and count to 30. Good luck!

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Very good info. I wonder with myself if I need to cut down on my meds. and the insulin situation has been happening to me. I will keep this in mind and talk to my doctor about it.

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@windyshores

Ohhhhh sorry I didn't catch the fact that you have frequent/daily afib. Different picture!

It is concerning that the doc didn't realize female gender had been dropped.

If I had afib often I would be thinking very differently. I guess it also depends on how long it lasts. Glad you have the Watchman.

I am so confused about aspirin. They tell us not to use it against clots, these days, though 7 years ago with my first episode that was the recommendation.

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Over 60, do not take, this is the new info. It can be hard on the stomach, and more. Although they make it hard not to use asprin due to the high cost of other blood thinners, which is a travesty.......

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