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Newly diagnosed AF and fear of the medications

Brainfoglady profile image
41 Replies

Hello. After years of undiagnosed AF I have at last been diagnosed during investigations for neurological symptoms from b12 deficiency. GP prescribed Edoxaban 60mg and Bisoprolol 1.25mg daily. No advice or discussion. Within days I suffered zig zag vision and crushing headache. Dr says probably due to the Bisoprolol causing very low blood pressure but said continue. After about 3 weeks my chest felt pressure/constricted and breathing became a conscious effort. I became tired and lethargic. I stopped taking bisoprolol. I contacted Dr after about 10 days and he has prescribed low dose digoxin. Is anyone else out there on digoxin? I’m scared to take it. Please let me know if you have experience of Digoxin. Or Edoxaban Thank you

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Brainfoglady
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41 Replies
Dawsonmackay profile image
Dawsonmackay

I had an AF friend who had been on Digoxin for ten years and did not have any problems. He was 84 when he passed due to leukemia.

Brainfoglady profile image
Brainfoglady in reply to Dawsonmackay

That is encouraging Dawsonmackay. Thanks

First, the Edoxaban is an anticoagulant which significantly helps to reduce any risk of stroke and it is important to take as prescribed. Generally, anticoagulants do not have many side effects but we are all different, that said, the one thing you do not want is a stroke! Bisoprolol can cause the side effects you describe so maybe the Digoxin will be more suitable to help control your AF. At this stage, the best thing you can do is take a look at the pinned post for useful links for Newbies and Oldies located to the right of this page. There you will be able to navigate through lots of useful information which will help you to understand more about AF and how it can be treated. Hope this helps.

Brainfoglady profile image
Brainfoglady in reply to

Thanks for the advise FlapJack

Savi18 profile image
Savi18

I am on low dose Digoxin as unable to tolerate Bisoprolol due to side effects (having tried it twice) which my Gp and Specialist are both aware of and have had no side effects since being on digoxin.

Have been on Digoxin for 5 months and Apixaban and a couple of other drugs for nearly a year following unsuccessful cardioversion. I do get light headed on bending and exertion, but feel that is due to the AF not the meds.

Brainfoglady profile image
Brainfoglady in reply to Savi18

Thank you - that sounds encouraging Savi18

cuore profile image
cuore in reply to Savi18

Does that mean that you have been in persistent atrial fibrillation for nearly a year and your treatment is drugs only and not an ablation?

Savi18 profile image
Savi18 in reply to cuore

Unfortunately yes. Was due to have ablation in June/July after seeing another consultant in February, but not had pre-op scan/assessment yet or heard anything due to current situation. Hoping that when we start to come out of lock down might hear something and will leave it a while after this starts to happen before i start chasing.

cuore profile image
cuore in reply to Savi18

If the drugs you have taken have never brought you back to sinus rhythm and this will be your first ablation, I would suggest chasing sooner rather than later. My EP told me that it is the period before the first ablation that the damage is done. For my first ablation, I was six months persistent and if I had not had the ablation then, I would not have been able to return to sinus rhythm. Now I have had three and still battling. May you have better luck.

Paulbounce profile image
Paulbounce

Brainfoglady wrote

"I contacted Dr after about 10 days and he has prescribed LOW DOSE digoxin"

And

"I’m scared to take it"

Taking a new med is always a worry - it's natural to be scared or nervous at first. I think sometimes the fear of something is much worse than any actual outcome.

It's a low dose - this will give your body plenty of time to adust. Follow your doc's advice and you will be just fine - you'll see. Bet I'm right ;-)

Paul

Brainfoglady profile image
Brainfoglady in reply to Paulbounce

Thanks for the encouragement

jeanjeannie50 profile image
jeanjeannie50

I too have a friend who has taken Digoxin for many years and it has more or less cured her AF.

Jean

Desanthony profile image
Desanthony

The very same thing happened to me on bisoprolol. I just couldn't take it or other medication of the same ilk. Eventually I was put on low dose digoxin and that seemed to work fine. After my first successful cardioversion I came off the digoxin and have not been back on it since. That first cardioversion lasted just short of a year. The second a matter of months - probably due to having a new knee and the painful physio afterwards. 3rd cardioversion I had in Feb still working.

Brainfoglady profile image
Brainfoglady in reply to Desanthony

It’s reassuring to know that you went through a similar experience and the digoxin worked. Thank you. I’ve just collected them so will give them a go.

When I was first in fast AF I was on digoxin as they could not get my HR below 195 bpm and I was struggling.

I took it for 6 months until my first cardioversion. I actually looked forward to taking it as it made my heart much calmer and I could actually get a few hours sleep

Brainfoglady profile image
Brainfoglady in reply to

Thank you and best wishes

Kaz747 profile image
Kaz747

I was on Digoxin for about 9 months without any problems (I was on other drugs concurrently).

Gowers profile image
Gowers

Like you I had exactly the same symptoms on Bisoporol. Last Nov i was in permanent af with a heart rate of 100-180. At my appointment with cardiologist he put me on Digoxin starting on high dose for 2 days reducing to 1.25mg x2 a day. I am now on 6.25mg twice a day but, can take a 3rd tablet if needed. I can't remember what the top dose is but my cardiology nurse last week says my dose is still considered low. For me it has none of the Bisoporol side effects. Like you I was very wary about taking it but, glad now I was prescribed it. I am due a blood test as levels of it in blood stream have to be checked. Do let us know how you get on with it.

Brainfoglady profile image
Brainfoglady in reply to Gowers

Thank you so much

Hammerboy profile image
Hammerboy

Hi, I was diagnosed with Paroxysmal AF 2 years ago aged 63, previously fit and well and after multiple attempts to record episodes on an ECG. My cardiologist recommended 1.25 mg Bisoprolol, 60mg Edoxiban and 5mg Amlodipine to reduce mildly high BP. I have always had a low HR so found the Bisoprolol made me very tired and lethargic and my HR was averaging 48/52 BPM so I decided to stop taking it. I have felt much better since and my AF is no worse 3 weeks, after stopping. I am still recovering after a recent ablation so only time will tell how effective its been but I made my decision purely on fatigue, not on AF symptoms. I will be discussing my medication with my EP on my follow up in 6 months time but I'm guessing the very low dose of Bisoprolol I was taking had little effect on my AF either way but I do think that its different for each person

Stay safe 🙂

smn100 profile image
smn100

I take Bisoprolol and Diego in and have fine for 10 years. I have permanent AF.

Please let us know how you get on, I also feel terrible on Bisoprolol and my cardiologist told me to take it at night around 6pm. All this really did was make my days a little better and I couldn’t sleep until about 2am for some reason . In now take them pill in pocket and I have purchased and Apple watch to ensure that I did Have an AF episode and it was not anxiety that also makes my heart rate race and BP rise.

My cardiologist took me off Amlodipine and kept me on Bisoprolol but I do wonder if he should have done it the other way round for my

Mildly high BP.

Take care

Brainfoglady profile image
Brainfoglady in reply to

I didn’t feel so catatonic when I stopped Bisoprolol I just couldn’t live like that. so you May be right. The advise so far from this forum is that many people feel bad with it I haven’t started the digoxin yet - got to work up the courage. Good luck

GuyThoma profile image
GuyThoma

Before my A-fib I was philosophically against taking any pills or drugs of any sort. My doctor had a hard job to persuade me to take a) betablockers, then b) anti-coagulants.

However, I did my research, and I trusted the doctor. Today I am an evangelist, the beta blockers really do control my heart rate (I had a cardioversion), and the anticoagulants save me from a real danger - heart attack.

Following more research, and doctor's recommendation, I take vitamin D, especially when there is not much sunshine in the winter. Previously I thought vitamin supplements were for posers, but now I am a convert to those too.

Auriculaire profile image
Auriculaire in reply to GuyThoma

Vitamin D is not actually a vitamin but a type of hormone.

GuyThoma profile image
GuyThoma in reply to Auriculaire

Thank you, your post has increased my knowledge, and my curiosity about Vitamin D.

Auriculaire profile image
Auriculaire in reply to GuyThoma

There is a website called vitamindwiki which has lots of links to vit D research. Also a book by Michael Holick "The Vitamin D Solution". Holick is one of the leading scientific researchers on vit D. The leading researchers say that if vit D deficiency which is endemic in many countries could be addressed billions could be saved in health care costs. But these billions would be at the expense of pharmaceutical company profits and privatised medicine profits so won't happen any time soon.

GuyThoma profile image
GuyThoma in reply to Auriculaire

Fascinating information on Vitamin D and Coronavirus, thank you.

Auriculaire profile image
Auriculaire in reply to GuyThoma

I'm not sure that what is true for other corona virii and respiratory pathogens in general re vit D is necessarily applicable to covid 19. However it seems to me to be telling that BAME persons are suffering disproportionately including hospital consultants who are not poor. What BAME s do have in common is often severe vit D deficiency as it is impossible for those living in northern latitudes to make enough vitD through their skin. They need to supplement and the pathetic amounts recommended by governments won't cut it.

Ppiman profile image
Ppiman

Digoxin is a very old but highly effective drug. Reading the label is not a good thing with it as, over the many years it has been available, it has gathered a long list of potential side effects, which have to be put on the packet. Very many people take it, however, and are, presumably as happy as I was with it. It was the only thing that worked for me and caused no side effects, whatsoever. You don't sound happy with your doctor, but he or she is, presumably, currently working under "lockdown" conditions, making life stressful and difficult indeed fur us all. Doctors are often at great personal risk of catching Covid-19 thanks to the poor amount of PPE the government has provided.

The side effects you felt from bisoprolol are those I had initially until my dose was dropped to 2.5mg - but even then I struggled. I didn't find the drug very effective at all - but I had atrial flutter not fibrillation, which, I was told, is much harder to treat with drugs. My heart rate and blood pressure were often very low. The digoxin did the trick.

My personal experience with arrhythmia is something I didn't recognise sufficiently at the time, and this was that my biggest problem wasn't my heart but the anxiety the feelings and side effects caused. Any change a drug brought on would spike my anxieties and lead to sometimes intense fear that my heart was going to conk out. It wasn't till I was eventually given a cardiac stress MRI, that showed no physical problems, that my anxiety lifted and I began to recover far better.

Steve

7164 profile image
7164

I too was put on Bishop when diagnosed with PAF two years ago. It gave me very low BP and lethargy and didn’t stop the PAF. After a year or so I came off it. I then discovered that Bisop is not recommend for PAF. There is so much to learn about this condition and my advice,for what it is worth, is do your research and try to understand what this illness is, use the experience of this forum, insist on seeing an electrophysiology cardiologist as they understand. Don’t let it progress without trying your best.

I am now on a calcium channel blocker which I find much better.

It can be a life changing disease and you must help yourself with lifestyle changes being incredibly important

Best of luck

Rod

3138REDROSE profile image
3138REDROSE in reply to 7164

Have you found a channel blocker that doesn’t cause you severe constipation .I am on Verapimil slow release as I couldn’t tolerate the beta blocker Bisoprolol, however had to be put on bisocodyl then senokot, but noticed they should only be taken for maximum of 6 weeks ,so now control my constipation with a handful of liquorice allsorts and a handful of dried pitted prunes each evening .Quite pleasant ,though boring, and not good for diet and weight !!Looking at other Channel blockers on websites ALL seem to have Constipation as a side effect ,so I would be interested if your channel blocker gives you this problem .But of course we are all different ,so if you have found one without this problem I am very happy for you .All the best 3138RedRose

7164 profile image
7164 in reply to 3138REDROSE

Sorry

I do take verapamil. I take 100 per cent Cranberry juice which helps all round 😊

Rod

3138REDROSE profile image
3138REDROSE in reply to 7164

That’s interesting.Do you drink a lot of it daily ? I only think of it as a cure for cystitis.thanks for that tip3138 RedRose

7164 profile image
7164 in reply to 3138REDROSE

Yep I drink a bottle a week

No constipation but the veranapril is causing me a tight chest and palpitations. I want to stop it.

cuore profile image
cuore in reply to 3138REDROSE

For constipation you might want to try Psyllium Husk. I add it in the morning to my oatmeal and there is no worry about weight gain.

3138REDROSE profile image
3138REDROSE in reply to cuore

Thank you that’s an idea.—I took it about 20 years ago for an upset stomach that turned out to be diverticulitis ,so it was successful for that.Take care .—3138RedRose

Tomred profile image
Tomred

hi brainfoglady i went undiagnosed for years also and was on treadmill stress test which showed a-fib it was like a hammer blow and after seeing the side effects of medications with my mother and father for various dis-eases i also was very wary of medications and tried loads of natural alternatives to no avail so reluctantly i now take 400mg multaq X 2 per day along with 1.25 mg bisoprolol once per day i still get a-fib no let up there but it doesnt seem to be as draining as my heart rate is much slower and the rythym slightly more settled as im male 60 year old next week ive been told to expect to be on antocoagulants around 65 years old and as someone who is anti medication i almost want to be on anti coags now we need to weigh the pros and cons and keep a diary of any side effects i think when people start meds and get settled on them they seem to forget to keep an eye on the longer term side effects its something we have to live with so please try and make educated decisions good luck

Brainfoglady profile image
Brainfoglady in reply to Tomred

Thanks Tomred. It would be less stressful with more info from Drs - we could then make an informed choice.

This site is invaluable and I’ve appreciated all the responses to my questions.

I was on a combination of Digoxin and Quinidine from 1986-1999. I had to have frequent blood tests to monitor for aplastic anemia. My heart rate, which had always been around 70, plunged into the 40's. I spent years feeling horrible with a heart that beat very slowly, but like a sledgehammer. It also never stopped my sporadic attacks of AFib. They were just as frequent as before I started on the drugs and back then it was off to the hospital every time.

Imagine my surprise at a routine visit to get prescription refills when my doctor suddenly announced that these were both horrible drugs. He wanted me off of them and referred to a study out of Tehran about Vitamin C helping A Fib. He also put me on a prescription fish oil drug that had just come out. My attacks continued at the same rate as before, each one requiring a trip to the emergency room. But, I was relieved that they were about the same frequency as when I was on Digoxin and Quinidine.

Finally in 1999 on the way to the airport I went into A Fib. I took a detour to the doctor's office, which was next to the hospital. He ran an EKG in the office and said I was in A Fib. I assumed they would wheel me into the hospital. Instead, he gave me a Verapamil and sent me home. It stopped the attack. I went home for a nap and to reschedule the flight and I took a flight that evening.

I used Verapamil as my Pill in the Pocket until 2003 or so when I had an attack that would not quit. In the hospital I was given Flecainide. It worked quickly. I was discharged with instructions to take 100mg daily. That dropped my heart rate down into the 30's and I was not able to drive or work due to the dizziness and overwhelming fatigue. Back to the doctor where Flecainide became my Pill in a Pocket. It has been such a relief to know I have something I only have to take once in a blue moon and that I know works. In the beginning my doctor also ordered Valium with the Verapamil and Flecainide because he figured my anxiety made the attacks worse. Knowing that Flecainide works has stopped my anxiety, and I have not had a prescription for the Valium in at least 10 years.

Brainfoglady profile image
Brainfoglady in reply to

Oh that sounds horrible. Am glad that you have a sort of resolution now

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