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Asking for Your input on Bisoprolol, Nebivolov, Flecainide What has been your experience with these drugs?

84 Replies

Six weeks ago I had my first strong AFIB as diagnosed in the emergency ward. After 3 days of a variety of scans they put me on Apixaban and 2.5 mg of Bisoprolol.

I'm a 70 year old male, always active. But now I can hardly get out of bed. I'm breathless, exhausted, and anxious. I have always been on a number of vitamin and herbal supplements, but these have all been taken away from me. I do sneak in 100mg of CoQ10, Magnesium, B vitamins and vitamin C.

Here on the forum many people complain about Bisoprolol. Should I be asking to change over to Nebivolov or Flecainide?

Did any of you make this change? How did you transition and what benefits did you find?

A Blessed Happy New Year to all you fine people.

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84 Replies

Bisoprolol is one of many betablockers, whose job is to keep your heart rate slower. Flecainide is one of several antiarrhythmics drugs whose job is to keep a regular rhythm. Different docs have different thoughts on adding an antiarrhythmic to the mix as they all have their side effects. I remember when I first started with a betablocker, it took me a month or two to get over the breathlessness. Let your doc know how you are feeling. Also make sure ypur blood pressure and heart rate are ok. Im typing this without my glasses so please excuse any crazy words😂

in reply to

Thank you for your input. My heart rate goes into the 40's. Because of the holidays I haven't talked to the Cardiologist who was not a very good listener on my first meeting with him.

The meds were prescribed at the hospital.

in reply to

Mine can drop into the 40’s but doesnt stay there , normally at rest Im 50’s to 60’s

meadfoot profile image
meadfoot

I agree with Hoski. It's all very new to your body so will take time to settle down. I don't take bisoprolol but I know many who do and many find the sleepiness difficult to deal with. I take atenolol which I think is an older drug but apart from the first few days I haven't found it gives me any side effects and been on it ten years now.

Give your body time to adjust and if things aren't suiting you I would contact my medic , preferably your cardiac consultant assuming you have one and see if anything needs changing. Best wishes.

in reply to meadfoot

Thank you Meadfoot. Interesting , you are on yet another drug. Ten years is a long time.

I'm glad it is working for you.

Best wishes for a Happy New Year.

Finvola profile image
Finvola

Bisoprolol seems to be the ‘starter drug’ when one is diagnosed with AF and it doesn’t agree with everyone. I was started on 2.5mg and felt as if I was wading through deep mud, breathless and unable to walk up a slope.

An EP changed me to Flecainide and reduced the Bisoprolol to 1.25mg. The Flecainide stopped my AF and the breathlessness was lessened somewhat but after four years of complaining to anyone who would listen, I saw my GP and told him of the effect Bisoprolol was having on my life. He changed me to Nebivolol. Wow - such a difference!

I have been taking Nebivolol 2.5mg for 18 months and can walk uphill, do several tasks one after another and feel almost normal again. I also take 200mg Flecainide (anti-arrhythmic drug) and Apixaban.

You need to talk this over in depth with your cardiologist - who may just love Bisoprolol!!! - but it is a good idea to go into such a consultation with knowledge of the three drugs and the differences between them. I remember reading that Nebivolol acts only on cardiac tissue and not lung tissue, hence its use with asthmatics. To be prescribed Flecainide, you will need to have an echocardiogram or similar to ensure your heart and valves are sound and in the UK it can be prescribed only by a consultant in the first instance.

I hope you can get a drug regime which allows you better health - it can be done.

in reply to Finvola

Hello Finvola,

So nice to have such a wonderful group of caring brothers and sisters on this forum. Everyone has something of value to add. Thank you.

Yes, I'm leaning towards Nebivolol based on how often I have noted it has helped many.

Are your two drugs easy to wean off if you have to?

Best wishes.

Finvola profile image
Finvola in reply to

I had no trouble changing from Bisoprolol - next day to Nebivolol but I have not stopped either one completely. That is because of the Flecainide which I was advised needs a beta blocker to safeguard against fast atrial Flutter which Flecainide can induce.

I tried a few years ago to reduce my Flecainide dose but my heart didn’t like the change and I decided not to rock the boat as my rhythm was otherwise stable.

in reply to Finvola

Quite a mix of meds. Hopefully they are working well for you.

Hi there,

I was diagnosed with AF in Jan 2010, aged 65. I was already on Statins and BP medication. but with the diagnosis of AF came additional drugs, Bisoprolol and Warfarin. Neither now would I ever, ever change.

To different degrees, I agree with both Hoski and Meadfoot. The first 8 weeks I was so slow to do anything. but eventually that wore off. I was prescribed Bisoprolol to be taken at Breakfast. I developed a weird side effect - random and violent nose bleeds. Initially everyone said it was the Warfarin, intuitively, a gut feeling, I knew it wasn't. I went back to my GP who looked up in her book of magic potions and brews and she said take it at night.

I did this and all my Bisoprolol issues disappeared.

All that I was left with then was my heart rate dropping to around 46 bpm every once in a while and a feeling of dramatic coldness at the extremeties, fingers, hands, feet and toes. apart from that it holds my HR at a steady 65 bpm. On occasions ( not very often) even now 10 years down the track this coldness and sudden drop in HR still occurs ... I don't bother fighting it, just go to bed and sleep for about 4 hours, regardless of the time of day. Wake up and am back to normal.

Nowadays, I drive a local bus service 6 days a fortnight and in between lead a very active life. Nothing bothers me now.

I might add I have never had any surgical intervention for my AF ( my choice), purely drugs and diet and lifestyle.

John

Hello John,

I'm pleased to hear it is working out for you. I take Apixaban 5 mgX2 daily, Bisoprolol 2.5mg in am, 60mg Telmisartan for BP, Ativan for anxiety and strong pain meds for chest surgery pain.

I can tell you that I'm basically totally wiped out and not wanting to get up. Aches and pains all over and difficulty breathing. I find it impossible to get out and do things. Pretty hard to deal with when you have always been active.

How much Biso are you on if I may ask? My HR has dropped to as low as 44 during the day.

My HR rarely goes over 55. You say sudden HR drop, you mean to 46 correct?

Why do you think taking it at night makes the difference?

John, thank you for your input. I will try switching to taking it at night.

Best wishes.

in reply to

Hi,

I am on 5 mg of Bisoprolol and take it at night.

Yes that's correct with Bisoprolol I am pretty constant at 65 to 67 bpm with my HR. Yes, when it drops to 46 it is sudden but interestingly never, never, ever when I am active - it only happens when I am at home or somewhere sitting around, reading, on computer or in some other non working but relaxing mode. Accompanying the drop to 46 is the coldness. I often joke with friends and family I get a preview of what it feels like to die. ( Doesn't go over too well :-) )

Events such as this drop and the coldness happen maybe only two or three times a year and totally without any warning.

Why taking at night makes a difference ....... bear with me, I'll try and explain. Its hard.

So, when I'm in AF my heart electrics are trying like hell to get my HR up as high as possible (the highest its ever got is 160 and although I seldom go into AF nowadays when I have, up around 149 is not unrealistic).

If I take Bisoprolol in the morning, with food around breakfast it works on me during the day when, whatever I'm doing ( except sitting around), in terms of activities, so because I'm active the heart is working away in total conflict with the power of the Bisoprolol. so the heart and its electrics and Bisoprolol are fighting each other. Total conflict.

At night I am at rest and so is my heart (but not necessarily the heart electrics) so my body is able in an uninterrupted way, able to receive, the power of the Bisoprolol and it then has the chance to get to work without any resistance. So, I take it at say, 8 pm, sleep/rest during the night, up at about 6 am for either work or other daytime activities and by then its in my system working away.

That's my very simple and non scientific, totally unofficial, and very personal explanation of why taking it at night helps.

Let me know if you need further clarification.

Happy New Year.

John

Holeinmyheart profile image
Holeinmyheart in reply to

It really scares me to hear so many of you talking casually about how low your heart rate drops. In Dec. of 2011 I had been having the same thing happening to me but this time I was driving and my heart slowed down enough that I passed out and drove right into another car head on. This was a real life changer for me, I had saw my cardiologist the week before and he didn’t think I needed a pacemaker yet! The accident sliced my spine in half, fractured both wrists, ribs, right heel, colon tear, left ventral hernia, multiple bruises . I now have a pacemaker so my heart won’t drop below 60. In 2019 I had my first ablation, bad time, surgeon made a hole in my heart, so now when I received the choice of another ablation or going on Flecainide 50 twice a day with my Atenolol 37.5 I choice trying the medicine trial first. I hope you all can get a pacemaker before you go thru what I did. I was lucky to come out alive.

in reply to Holeinmyheart

We may talk casually about the HR, but what else can you do? The doctors from my experience take it all too casually . When we are gone there are twice as many people

waiting for their services. In reality we are just a patient with a numbered file.

Holeinmyheart profile image
Holeinmyheart in reply to

Are you seeing a cardiologist or an electrophysiologist? I think the EP’s know a lot more. I feel lucky to be in the US in our ability to see doctors than what it sounds like in the UK.

in reply to Holeinmyheart

Actually I'm in Canada. Not much better here much of the time. Actually I have been trying to get an appointment with one of the 6 Cardiologists that work in the same office, with no luck all day. In the hospital ER for 3 days they did multiple scans and other tests all covered under our Gov. medical plan. Now this out of hospital Cardio wants all the tests repeated which is a real waste of time and money.

I want my meds changed but I have to meet with him to do that. Frustrating.

Thanks

Holeinmyheart profile image
Holeinmyheart in reply to

Sorry it is so frustrating ! What is your diagnosis ? I have Sick Sinus Syndrome. It is an electrical problem with the upper chambers of the heart. My dad had it also.

in reply to Holeinmyheart

I had sick sinus but termed as minor. Now all of sudden I acquired this AFIB.

I still don't know the exact type as the Cardiologist has still not reviewed the file from the hospital ER that he has requested. The problem with this Gov run medical system is that things flow like molasses if you get stuck with with doctors that have a high opinion of themselves. Today I spent most of the day calling for an appointment only to get a recording and leave a message which have yet to be answered.

Back on it again tomorrow.

Note what I said earlier. I spent 3 days in the ER as there were no beds in the 600 bed tower. Toronto has many large hospitals. But our idiot Prime Minister invited the world refugees and migrants to come at will . Now in just over 2 years we have about 300,000 undocumented new comers from the Middle East and migrants from the USA who are afraid Trump will deport them. Our medical system is overwhelmed.

We have 3 star and even 4 star hotels full of refugees many in need of medical care.

Holeinmyheart profile image
Holeinmyheart in reply to

OMG, what a mess, when I went into Afib I just needed an ablation for the scar tissue to be burned out. I still have Sick Sinus and get my pacemaker checked every 3 months and see my EP doc every 6 mo. Thou if I feel I need him sooner I can just call and get in right away. Thank God for Medicare and BCBS. I have other physical problems like multiple kidney stones and IBS, etc but I have no problems with Doctors for all and insurance covers every thing . You need to move to America.

in reply to Holeinmyheart

Our problem is a leftist gov that is not dedicated to the medical needs of it's citizens

but the needs of the 3rd world and climate change.

I still haven't reached my GP or the Cardiologist. A mess is right.

cuore profile image
cuore in reply to

You think it's bad in Toronto for AF. Come to Vancouver,B.C. and it's worse.

in reply to cuore

We can thank our hard working politicians for messing things up.

I see in Vancouver as well as Toronto the tourist trade has pregnant mothers from China and other countries coming over to give birth so the children will be Canadian citizens.

Meanwhile the hospitals are bursting at the seams and born Canadians are out in the cold.

cuore profile image
cuore in reply to

Apparently there are overseas advertisements recruiting mothers to be. It's a business.

Robbo1975 profile image
Robbo1975

Hi, I changed from bisoprolol to nebivolol and the change was night and day, the bisoprolol made me feel lethargic all the time and breathless

As soon as I started the nebivolol I had a new lease of life definitely try and get them to change it

FancyPants54 profile image
FancyPants54 in reply to Robbo1975

I've been on the Bisoprolol since February now. I am menopausal and on HRT and I have a thyroid issue, so it's hard to separate out what is causing what. But although my HRT seems at a good level now and my thyroid dose isn't bad (not optimal but not bad) I am always too weary to get anything much done. My resting HR is in the 80's, and at the moment in the 90's due to some inescapable and ongoing stress I think. My heart rate was in the 70's before AF.

I had a few weeks of feeling a little better in late autumn and for the first time in years I redecorated the pantry, but it took me 2 weeks to finish. I find I can't do much at all in the mornings. I get going in the afternoons. But my stamina is rubbish. I get exhausted quickly if I walk far or uphill or stairs. I tend to blame myself and take it out on myself. But could this be the Bisoprolol that I take every morning?

in reply to FancyPants54

Hi FancyPants54. I have taken Biso for only a few weeks and it has really struggling.

From the posts on here, I would blame Biso for sure.

Some say taking it at night has been a great help.

Thank you

in reply to Robbo1975

Thank you for that. You are not the first to say that. I'm glad you solved your issue.

Thomas45 profile image
Thomas45

After being awake for three hours due to chronic urticaria triggered as a very rare side effect of Bisoprolol ( between 1 and 9 people in every ten thousand who take Bisoprolol get it), I now feel I could sleep, so more later.

in reply to Thomas45

I just got up and I want to go back to bed as well.

Surreychica_1 profile image
Surreychica_1

I was taking Bisprolol along with Ticagrelor. I felt terrible. I was so slow and ached all over. Although it is true to say I was taking Bisprolol before I had my stent and didnt notice anything except a wonderful relief from heart palpations. I was taking the Bisprolol at night But after my stent I was told to take it in the morning and of course the Ticarelor twice a day.

The cardiolotist has now changed both and I am on Nebivolol and Clopidogrel but although I am a lot better I do still get aches and pains and am still slow although not as bad as I was.

I think when I see the cardioligist again I will ask if I can take the Nebivolol as I still do get a few aches and pains and feel tired a lot of the time.

I also take tablets for my blood pressure which I take at night.

I do not suffer from AF but I do suffer from escopic heart beats.

Hope you sort out your problems soon. It is horrible to suffer from fatique and aches and pains the whole time.

in reply to Surreychica_1

Thank you for your input.

Surreychica_1 profile image
Surreychica_1 in reply to

I meant to say I take the Nebivolol in the morning, but I will ask if I can take them at night.

Hi, I take apixaban, flecainde and nebivolol 1.25 mg. Was on bisoprolol 1.25 but it limited my exercise capacity. If you can try and get an appointment with an EP rather than a cardiologist they are far more knowledgeable about AF. Nebivolol is much better than bisoprolol in my and most other peoples opinion.

Good luck

Andy

in reply to

I fully agree with you.

Shcldavies profile image
Shcldavies

I understand why you ask the question, unfortunately there is no way of knowing how any one person will react, not even the Docs know for certain. Generally most of these type of drugs will take some getting used to and they all do different things in different ways as you will see from many replies to you question. In my case Bisoprolol does work but it takes time to get used to it and getting the dose right can be trial and error - too much may cause other arrhythmia and too little will not work. Flecanide can work well for some and I thought as a miracle drug for the first 3 months until it gave me very bad Aflutter. Getting the right treatment can be a bit of a journey of trial and error, generally Docs know best so you need to tell them of your condition as accurately as possible for them to decide on the best treatment for you. Whilst Docs do know best it is not unusual for their advise to be no more than the best available and it may still take some time to get the medication right for your condition. I have posted about my experience wth my journey which may give you an appreciation of what all this can be like, thankfully I am now arrhythmia free and on just 1.25 Bisoporolol as a maintenance dose feeling the best I have been for over 20 years - but it took me 20 years to get it right, mainly because I did not get the Docs involved as soon as I should have. Ask the good people on this forum as many questions as you can think about, you will get genuine answers that will inform you but these will not necessarily be pertinent to your particular condition, some will but knowing which are can be difficult and always seek Docs advise before you do anything.

Auriculaire profile image
Auriculaire in reply to Shcldavies

In my experience docs often do not know best as their approach tends to be a "one size fits all " when it comes to meds. There is very little individualisation of drug dosages in allopathic medicine. It is now known that there are genetically 4 different types of people when it comes to how quickly or slowly drugs are metabolised. The dose recommended by the drugs companies suits one of them. The differences between men and womens's physiology are barely acknowledged. Only you can know how your body feels on any medication and all too often people's complaints about side effects are ignored or dismissed by their doctors. With a condition like afib where the medication is for quality of life keeping people on doses of beta blockers that make any active life near impossible is pointless. The approach should be to find the smallest dose that will reduce the heart rate to the desired rate . More should be done to try to deduce whether vagal issues are causing the afib and advise accordingly. More research should be done into magnesium therapy ( fat chance as there is no money to be made here) and lifestyle factors. It is just not good enough that patients have to find out for themselves on forums like this that Nebivolol is often a much better fit for them than the Bisoprolol so beloved of many cardiologists.

in reply to Auriculaire

You are totally right. Allopathic medicine has a lot to learn about the human body.

It is not one size fits all. Alternative medicine has a lot of helpful methods that are ignored by the typical doctors. For years I took vitamins and other supplements like herbs, fish oil, minerals like magnesium etc. Now on this regime the 2 cardiologists I have met with have told me to dump them all as they are useless. I don't believe that for one moment. However since many can be blood thinners I have no choice but to abandon this group. If you look at the studies on how many people may actually be helped by the daily blood thinner drugs for people with AFIB you would see that in on average it may be about 12 people out of 1000 that would be saved from getting a stroke. Now you have to ask yourself is this number enough to convince you to take the drug for years?

I worked for a pharmaceutical company and I know how we went around convincing doctors to prescribe our drugs to their patients. I know how we bribed them with gifts.

The old saying, follow the money is completely accurate.

Thank you for your input.

Auriculaire profile image
Auriculaire in reply to

I still take fish oils on Apixaban. I read somewhere that up to 1gm a day was ok. I also take magnesium Co Q10, and various other supplements. Before going on Apixaban I had a coagulation blood test before bowel surgery and despite various supposedly "blood thinning " supplements my clotting was normal.

in reply to Auriculaire

Happy New Year

Yes, I also read that 1gm was OK. But there are many conflicting reports.

If I may ask, what other supplements have you found to be OK for you?

Have you read this?

knowledgeofhealth.com/contr...

Auriculaire profile image
Auriculaire in reply to

Yes I did read it not long ago. I take vit K2 and a small amount of calcium citrate, n acetyl cysteine and curcumin and bromelain every other day. The last 3 are supposed to have blood thinning effects but I only take small amounts. I would not stop the magnesium taurate no matter what my cardiologist said. Since taking 100mg 3 times a day I have had no attacks of afib and very few ectopics. Allopathic docs on the whole are not well versed in supplements. My own GP thinks curcumin is good for inflammation.

in reply to Auriculaire

I eat greens and peas for vitamin K and take turmeric in prepared foods. Turmeric is good for inflammation as is bromelain. Yes they are blood thinners. I take B50 X2 complex along with a multiple vitamin, no iron. I also take 250 mg of Chelated Magnesium. Most doctors have very little knowledge of supplements.

Auriculaire profile image
Auriculaire in reply to

It is K1 that is found mainly in veg. K2 is found in animal products.

in reply to Auriculaire

You are correct. K2 can also be found in fermented foods.

Bacteria in the gut can synthesize vitamin K-1 into vitamin K-2.

Because of the thinners I am not taking the K2 (MK-7).

Auriculaire profile image
Auriculaire in reply to

It is ok with Apixaban as that works on a different part of the clotting process from Warfarin.

in reply to Auriculaire

Yes I know. I just don't want to "over do it" if it is possible.

cuore profile image
cuore in reply to

Interesting because I had not come across a paper that said 12 in 1000 would be saved from getting a stroke by taking an anti-coagulant. I knew the number was low. I also take Apixaban 5mg x2 as you say above you do also . So we are both trying to evade being one of the 12. Since you worked for a pharmaceutical company and you take it, then I feel I should stay on it. There is an "Oceans" study that is examining if we should all be on anti-coagulants.

Shcldavies profile image
Shcldavies in reply to Auriculaire

Totally agree with how to best fix the root cause of the problem rather than the symptoms, some of my posts go into this in some detail. I would be cautious regarding the Docs advise however, whilst I agree they are not always right and do try the one fix fixes all approach on too many occasions, if they are any good they will have a much better understanding on what the drugs can do and what concoctions to avoid.

in reply to Shcldavies

When I left the Toronto hospital I asked the Internist and the Cardiologist about my extensive list of vitamins/supplements and I got "I have no idea as I'm not versed on that stuff, do what you think". The Cardio said , "those things are useless and they don't fit in with the Apixaban so stop them all."

I asked the Pharmacists and they told me to stop them but couldn't tell me why.

I called up the maker of the drug and they said to "read the paper in the drug box. If it doesn't have the answers we can't tell you anything more. Perhaps you can call your pharmacist or your doctor"

In other words I was going in circles but no answers.

People with AFIB will find this of interest. BUT PLEASE do talk with your doctor first.

knowledgeofhealth.com/contr...

in reply to Shcldavies

Thank you Shcldavies for a fine post.

wilsond profile image
wilsond

Hello I take bisoprolol and flecanide but only if I get an episode. Usually 1.25 biso and 100 mg flec. Rarely, I sometimes have to repeat the dose but usually this regime works for me. I too had lot of fatigue and breathlessness with higher daily dose of biso. Worth mentioning to your medics.

Best wishes x

in reply to wilsond

That is an interesting approach. Why aren't more people on such a protocol ?

I assume you are the "typical" AFIB patient.

If it works for you it should work for others, perhaps not all of course.

Thanks and Best Wishes

wilsond profile image
wilsond in reply to

I have paroxysmal afib in other words comes and goes,and also A flutter. Apart from hypertension no other heart issues. It works well for me. I did have a long courseb of daily doses which gradually reduced.

Good luck,ask lots of questions,take a friend and write down your questions with space for the answers !

in reply to wilsond

Thank you.

Take care.

After my AF diagnosis I was given Bisoprolol 1.25mg daily by A&E docs which dropped my heart rate to high 30’s/low40’s & made me so dizzy I could barely stand up.

Saw a cardiologist privately who put me on Flecainide 50 mg & Apixaban 5mg both twice daily & have been fine since.

Pat x

in reply to

Thank you for your input.

cuore profile image
cuore in reply to

Fantastic! Your cardiologist put you on an anti arrhythmic drug to bring you back to sinus and stay in sinus. The heart rate drug which you were taking is exactly that -- a drug just to keep your rate down and NOT address the rhythm.

Now that I am a seasoned affibber, I am astounded , when first diagnosed, that I was given metotropol ( a rate control drug) by my GP that made the condition worse all the while knowing he was not licensed to prescribe an anti arrhythmic drug to get me in sinus and keep me in sinus. I was to put up with the episodes just as long as the heart rate was low. Well, the GP did such a good job that he got me to persistent AF since only the rate was addressed and not the rhythm.

in reply to cuore

The A& E doc who first put me on Bisoprolol failed to take a proper medical history/didn’t know it was contra indicated with asthma & just presented me with a tablet to swallow (stupidly I did) & gave me a prescription for 7 more doses, with instructions to see my GP for a further prescription & onward referral to Community Cardiology ( an interim service here in Sussex) run by GPs with additional cardiology training & overseen by a cardiology consultant. (I don’t know if the service is any good as I decided to see a ‘proper’ Cardiologist privately) I would never usually take anything without thoroughly reading through a Patient info leaflet, but couldn’t wait to escape home after several scary hours with rapid irregular beat which self converted just as they were preparing to cardiovert me! I think the fear of the procedure did the trick!

It turned out the Bisoprolol had no effect on my asthma, but dropped my BP & HR so low I could barely stand. The GP stopped the betablocker but could offer nothing else, I would just have to wait with my symptoms worsening - frequent SVT & ectopics, odd runs of irregular beats, for 8 weeks until the Community Cardiology appointment! Hence my decision to go private. Appointment was a 10 days wait during which time I had an echocardiogram & 24 hour monitor.

Have now been on Flecainide & Apixaban for 18 months & feeling fine - just a few odd dreams as a side effect of the Flecainide.

Pat x

cuore profile image
cuore in reply to

Good for you, Pattering. In British Columbia, Canada there are no private clinics for AF since the government bans clinics. ( There is a three year ongoing trial to reverse that decision by the government). Yes, Flecainide is an anti arrhythmic drug designed to get you in sinus and keep you in sinus.

I eventually did go private to Bordeaux, France where I had to have three ablations to fix the problem that the B.C. medical system caused by helping me to deteriorate when I could have followed your path. I am in sinus now, no thanks to B.C.

in reply to cuore

I think those of us in UK who can afford it, are so fortunate to be able to switch between NHS and private care.

I know that in future, if my AF worsens, I can see a consultant quickly via the private route to decide on a treatment plan, & if different medication is recommended, I can get that on the NHS via my GP. If I need an ablation in future, I can transfer back into the NHS as the cost for me would be prohibitive under private care. I would still be on a long waiting list, but would probably have meds tweaked whilst waiting, in other words, a plan.

It must have been beyond frustrating for you and incredibly expensive and inconvenient to have to travel abroad for treatment.

I really hope your AF stays settled for a long time.

Pat x

cuore profile image
cuore in reply to

Thank you for your kind wishes. Yes, it was very expensive for me with each ablation ( a total of 3) about 16,500 euros plus cost of travel, but it was worth every penny even though the Canadian dollar is quite low compared to the euro. You got it right -- it was beyond frustrating. I was constantly stressed out in persistent AF for five months just to see an EP ( the actual date had been scheduled 7 months down the road whereby I severely complained). Luckily I got an ablation one month later in Bordeaux placing me at 6 months persistent.

Because I researched extensively, I knew exactly how fast my heart was deteriorating being kept persistent but I did not know the extent of the damage. The useless cardiologist kept saying I was fine, but the EP did say I would get worse waiting for an ablation.

After my third ablation, the Bordeaux EP said I was one of the most complicated cases at the 6 months persistent, plus had I not had an ablation at the six months stage for the first ablation, I would never have been able to return to sinus rhythm. The damage to the heart is done when one first goes into persistent. I am convinced that since I was "beyond frustrating," my heart was racing to be remodelled.

So, I have a very diseased heart and extensive ablation thanks to the British Columbia health system for AF. But, I am lucky to have found Bordeaux, and I am now almost eight months NRS after my third ablation.

I do try to spread the word that if one goes into persistent "time is of the essence."

That's when the damage is really done. Unfortunately, a lot of cardiologists and perhaps even EPs are not up to speed.

Mrsvemb profile image
Mrsvemb

I changed from Bisoprolol to Nevibolol 3 months ago after being on Bisoprolol for about 7 years. During this time my dose was increased from 1.25mg once a day to 2.5mg twice a day.

I was lethargic and falling asleep in the afternoons, also getting breathless when walking.

The transition was simple, stop Bisoprolol and replace with Nevibolol.

Now since the change, I can stay awake all day and walk up a hill and talk at the same time.

My cardiologist tried to put me off of making the change, but I pushed for it having read of the positive comments on here.

My episodes of AF have reduced by about 50% since the change, but when I do get it, my heart rate is a lot faster.

I am experimenting (with my cardiologists approval) with using a small dose of bisoprolol and 50mg flecainide as a PIP.

Of course we are all different, but talk to your cardiologist about the change.

For me, it has been a positive experience

in reply to Mrsvemb

Thank you and Best wishes to you.

HowMyHeartSings profile image
HowMyHeartSings

Hi I was on Bisoprolol but struggled with its effects - sluggish, freezing feet, insomnia. I changed to 2.5 mg of Nebivolol twice a day a few months ago and tolerate it far better.

in reply to HowMyHeartSings

I'm pleased to hear you are doing better. Thank you for your contribution.

123Abc123 profile image
123Abc123

Hi

I put up with Bisoprolol for a couple of years. It made me very tired but still had problems sleeping. The worse part was the effects on my concentration. I took flecainide for about two weeks but it made me sooo dizzy I had to stop taking it. Currently on Atenolol which doesn’t seem to be as effect as it was to begin with - despite having the dose doubled to 100 mg.

Good luck.

in reply to 123Abc123

Best of luck to you as well.

dfjpurnell profile image
dfjpurnell

Maybe the answer is to reduce the dose of Bisoprolol. I had same problem.

in reply to dfjpurnell

Yes. That is what I'm doing on my own very gradually.

Thank you.

Mugster profile image
Mugster

Bisoprolol can make you feel sluggish especially at high doses. At one point I was on 10mg and my legs felt like planks when walking. After my ablation Over many months I slowly reduced the dosage to 1.25mg at which I feel no side effects . I found my body became use to it and a sudden change in dosage upset my body's equilibrium.

By the way the instructions that came with mine (I am in the UK) said do not take if HR falls below 50...

Hope this helps

in reply to Mugster

Thank you. Very interesting , I got no such instructions here in Canada.

How did you ever manage on a 10mg dose?

Best Wishes

KMRobbo profile image
KMRobbo

Questions:

Were you breathless/tired before your afib attack/diagnosis?

Were you breathless/ tired during your afib attack?

Are you in afib now?

If all 3 are "no" then very probably it's the Bisoprolol. Note I am not medically trained.

However when I discovered/ was diagnosed with afib, the hospital chucked a 1.25mg bisop at me and said take that! Within 40 minutes I was asleep. I was shaken awake by a nurse when the consultat came around and I was so groggy I could not understand him! I was discharged with more bishops 1 25mg.

Every time I took one I was asleep in 49 mins for 5 hours or so, woke up feeling terrible, felt very groggy, pain in my arms and upper chest, . I went for a walk, breathless, tired i could not run more than 100 yards and my max HR was 115 or so , no exercise tolerance. Resting hr was somewhere on the 40s.

A few days before this I could run 6 x 8 min miles cross country! I was not actually in afib when I was discharged so it was obvious it was the bisoprolol . I suffered for 7 days no improvement so I went to my GP and told her the problem. She was worried my night time hr may drop below 40 in addition so she swapped me to Atenolol another beta blocker. This was better but had the same symptoms breathless tired, weary, poor exercise tolerance just not as severe. I did this for 14 days but although I went go work I had to go home at lunch as I was getting so tired I was afraid of driving . At home straight to sleep. Back to the GP who said it may be I don't tolerate beta blockers and switched me to verapamil a calcium channel blocker. Very few side effects, slight exercise intolerance, but only a few % slower running than no drugs. Life back!

Suggest you see your GP and explain you position. Having afib is bad enough without having drug side effects!

Note there are many other beta blockers which may be fine for you, just a matter of trying others.

Also note, if you are asthmatic at all you should not take bisoprolol anyway.

Best wishes

in reply to KMRobbo

Thank you for your interesting input. It really hit you hard. What I can't understand is how some people can tolerate the 10 mg a day.

Best wishes to you.

KMRobbo profile image
KMRobbo in reply to

One if the first rules : drugs work in different ways on different people .

My view : if it makes you feel bad it is bad, what you are doing is trying to maintain a decent quality of life.

Another fact is that "afib " covers a range of issues. Afib us the result. Many times no-one knows the cause of the afib, you are trying to fix something when you don't know the cause or the reason you have it. I never even found any triggers for mine, except possibly stress. However I have been sressed a lot more earlier in my life and never had afib!

Additionally Afb can be debilitating, however when I had it I was asymptomatic, I was running at 243bpm and I could not tell, other than the reading on my Garmin watch! (which is how I found out I had afib, 165 bpm sat still)

However I developed re entrant atrial flutter after my afib was fixed, HR (only) 140 and walking to the kitchen to make a brew wiped me out! Totally breathless!

It's all about finding out what works for you.

in reply to KMRobbo

Thank you. Well said.

Best wishes

absolutepatsy profile image
absolutepatsy

Bisoprolol did not agree with me and after about 3 months of lethargy, cold feet and hands, jumpy legs at night, numbness in my toes, breathlessness the list goes on, I was put onto Flecainide and Atenolol which changed everything for the better. Go to your cardiologist and ask to be taken off bisoprolol. Don't allow him/her not to listen and if you feel you are not being heard, ask for another Cardiologist or Electrophysiologist. You have to keep pushing for what you are entitled to, ask plenty of questions. This forum is a great help, all the best for 2020.

Thank you absolutepatsy . You are totally correct. Doctors are very poor listeners .

Best wishes to you as well.

Palpman profile image
Palpman

I am confused now. Twenty odd years ago I was put on Beta Blockers such as Atenolol and Inderal to reduce my heart rate.

This, however did not stop my weekly SVT tachycardia episodes at all. HR went to 170 at rest from 60.

Five months ago I was put on Flecainide 100 x 2 for rhythm control. This rhythm control tablet stopped my SVT Tachycardia attacks totally even though I had to stop the beta blockers due to low HR.

Rhythm control tablet now controls heart rate it seems.

Some people here say the Flecainide stops Atrial Fibrillation and can cause Atrial Flutter. This is totally opposite to what it does to me as it causes AF in short spells of up to 5 minutes.

in reply to Palpman

You are right. it is different for everyone so being confused is not hard to do.

Wish you all the best.

Thanks

Mamayo profile image
Mamayo

Rest assured that there’s light at the end of the tunnel:) Like you, I could hardly get out of bed the first couple of months- exhausted, lightheaded but never out of breath. I was taking a similar beta blocker (Metoprolol) along w Flecainide and Apixaban. Luckily, my EP was very receptive to these side effects and eventually had me come off the beta blocker and use only as a pill in pocket should I get another AFIB episode. So far so good with this change of Meds. Now, I only take my Flecainide and Apixaban (Eliquis) daily & religiously along with Magnesium & keep the metoprolol close by as a PIP. Transitioning from the daily dose of the beta blocker was as easy as weaning from it over a span of days and the improvement in energy level was noticeable almost immediately.

So yes, the road to feeling human again and getting your life back is long and arduous but it’s worth taking. Talk to your EP and be honest about your side effects, read up on AFIB and continue to educate yourself on a condition shared by so many of us, researched by even more people but which is still largely unknown. Then you can ask about what your options are from an informed position and decide together with your physician on which course of action to take...

Hope this helps...God bless and happy New Year:)!

in reply to Mamayo

Thank you for sharing and thanks for the good advice. Here in Canada I don't think the doctors endorse the PIP as you call it. But, I sure agree with such a plan.

Yes, the breathlessness is a real issue. As is the HR in the 40's

God Bless you as well and a Happy New Year to you and yours.

Foxglo profile image
Foxglo

I was changed to diltizem because Bisoprolol isn’t good for asthma. It wasn’t till I changed I realised how tired I was on Bidoprol. My change was good for me. I also take the branded tambacor which suits me, for me it is important to have the same brand so I don’t get palpitations when a different brand appears.

in reply to Foxglo

Thanks for your response. Wow, yet two more drugs I haven't heard of.

Wishing you a Happy New Year

2Havanese profile image
2Havanese

For almost 25 years I told the doctor (GP or otherwise) that my heart would go crazy... very irregular, then the crazy fast A-fib. (170-220 bpm). They only caught it once on an ekg. Sent me from the GP to ER, and it had resolved itself. grrrrr... On my adult son's birthday this year, I felt it go berserk. But, I had quit telling anyone long ago because I thought I was going nuts when they couldn't find it! This time, my son hugged me, then pulled back asking me what in the world was wrong with my heart!! FINALLY it was still at 240bpm when I got to ER. (Not that I want a heart issue... but I was seriously questioning my sanity! )

That was 4 months ago. Before that day, I was on Norvasc and Lisinopril for high BP. I also take pain medication for a botched cement job on 4 crushed vertebrae, AND I am medicated for narcolepsy.

The cardiologist and EP took away the Lisinopril and have slowly added:

Eliquis 5mg - morning and night

Metropolol - 50mg - morning and night.

Magnesium

Flecainide 100mg -morning and night

I am BEYOND exhausted all of the time...but I was managing. Until they increased the Flecainide 50mg BID to 100mg BID. Then I started having severe narcolepsy symptoms again: falling asleep with food in my mouth, or standing up, even in the shower! So, this past Monday he took away the Flecainide entirely. I told him I could tolerate the lower dose, but he looked very worried and said "no".

I've been told my insurance will want to see 3 months on this regimen before they authorize an ablation. I'm just hoping I won't be THIS exhausted for the next 3 month!

in reply to 2Havanese

That is a very tough situation. I hope 2020 will prove to be a good year for you which will see you get a dramatic improvement .

Thank you for your input and best wishes.

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