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How do people feel with Afib

Myflowers2 profile image
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How do people feel with Afib ? I feel terrible. Is anyone else on 10 mg of Bisoporol a day. 5 mg morning and 5 mg at night.

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Myflowers2 profile image
Myflowers2
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104 Replies
Jishuang44 profile image
Jishuang44

I am with you there. I think I feel the worst I can ever remember. I am used to playing tennis, running upstairs, shopping, meeting friends, going to church, all notwithstanding my dilated cardiomyopathy, but since starting with Afib following catching the metapneumovirus in late November, my whole life as I knew it has pretty much disappeared. I can’t do any of the things I did before. Yesterday I tried to go for a short walk (I was previously used to doing about 10,000 steps a day) but had to turn back after half a block as the Afib combined with the cold (4 degrees here) just meant I couldn’t move my legs. I feel extremely fatigued and sick all the time so have dropped 5kg. Am booked in for cardioversion in 2-3 months’ time but not sure how I will function until then. I have 2 teenage daughters and a husband who expect me to function and are fed up with me for essentially being out of action. Am taking Carvedilol (dose just increased to 25mg twice daily), furosemide and a blood thinner.

secondtry profile image
secondtry in reply toJishuang44

Something seems wrong, I would book an early private cardiologist appointment and discuss different pill options. I would also see an Alternative Practitioner; I consulted an experienced Naturopath who prescribed just a Magnesium compound and CoQ10 suplements.

Sally_Scott profile image
Sally_Scott in reply tosecondtry

That’s interesting. I take magnesium and CoQ10 daily. Have done for years. So you don’t take any other meds for your heart?

secondtry profile image
secondtry in reply toSally_Scott

Yes, I backed all the horses, so take Flecainide (prescribed by my cardiologist) as well as needed to stop the AF dead asap. However, back then 10yrs ago the Naturopath said he suggests just those 2 supplements for all his AF patients.

CoconutBob profile image
CoconutBob in reply tosecondtry

What dosage of mg and CoQ10 do you take?

secondtry profile image
secondtry in reply toCoconutBob

Mg unknown as take 1/4 dose of a Mg compound orally and a couple of squirts of lotion with Melatonin rubbed into the skin at night. I wish I could get my level up but anymore orally upsets my stomach and a magnesium spray on the skin doesnt raise my levels either, so reluctantly am accepting the situation.

CoQ10 I take 100gms/day but today received my blood test results back, which show I am over the top of the normal range so will be stopping for a couple of months. Ideally, get tested every 6 months that's what I did initially to get the right level as adjustments may be required. Testing less frequently now as has become so expensive.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

As per your suggestion a week or so ago, I looked up a lot of your earlier posts. All very interesting and worthy of following. You may have said, but did you lose a lot of weight? As of this morning I have lost 13% of my weight since the diagnosis. Thanks again for your comments.

secondtry profile image
secondtry in reply toPommerania78

13% that's good. I probably lost around 10% after AF diagnosis, largely due to anxiety.

Way back when, at over 90 kilos, I used to diet lose 6 or 7 Kilos and then it all went back on as soon as the diet stopped.

Then one day attending a farmer's meeting in Oxford, I heard purely by chance Dr Natasha Cambell-McBride speak and she included a reference to Weston A Price. Game over, I improved my regular food intake, no more diets and no more need to diet, as stay around BMI 23.

(sorry can't put links in for you as apparently Admin don't allow 🤔)

Pommerania78 profile image
Pommerania78 in reply tosecondtry

I think I started with weighing more than you did. I started at 156 at the emergency room. Do you think my Flecainide will work better as I lose weight? I have noticed in the last little bit (I have been on it for a little over two months) it seems to be more effective. Also, (I take 50 mg. of Metoprol every day) my pulse rate does not go up and down as much. It went up and down (170 and back to normal in about a few minutes) this morning, but it has been a week since that happend and it used to occur more frequently.

secondtry profile image
secondtry in reply toPommerania78

Yes.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

So you think the Flecainide will be more effective as I lose weight? I plan to lose at least 20% of my original weight. While the Legacy Study says that 10% loss is what begins the improvement, the Cleveland Clinic has said it is 20%. Thanks for your help. I have begun to look at and study the people you have recommended. I think it was you that once said that if we were honest with ourselves we could see, with introspection, that we have had a hand in bringing about the Afib in our bodies. Perhaps weight gain, bad diet, etc. and that we must recognize this in order to see improvement. If that was you, and you have time, I would enjoy your elaboration. Thanks again.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

So you think the Flecainide will be more effective as I lose weight? I plan to lose at least 20% of my original weight. While the Legacy Study says that 10% loss is what begins the improvement, the Cleveland Clinic has said it is 20%. Thanks for your help. I have begun to look at and study the people you have recommended. I think it was you that once said that if we were honest with ourselves we could see, with introspection, that we have had a hand in bringing about the Afib in our bodies. Perhaps weight gain, bad diet, etc. and that we must recognize this in order to see improvement. If that was you, and you have time, I would enjoy your elaboration. Thanks again.

fcmdl profile image
fcmdl in reply toPommerania78

I would not say people "cause" their own Afib. I have 4 family members with either Afib or Tachycardia - we don't live in the same Province, have all been physically active and are at weight or under. Our family history also includes previous 2 generations with Afib, 2 of which had strokes and died at a very young age. I have seen a dietician to make sure it is not diet. No comment from cardiologist that it is my fault. I don't think this is a put a ribbon around all situation and tell them it's their fault. For some perhaps, for others no.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

I have looked up the people you recommended and I will study them. If you have any other advice, please say on. Isn't it amazing that people from thousands of miles away can communicate like this? Are you familiar with the idea that damage to the Vagus Nerve causes Afib, rapid heart rate, etc?

secondtry profile image
secondtry in reply toPommerania78

Thanks yes, my Lone PAF is definitely vagally mediated. I know this because I have set off episodes in the past by drinking a v cold drink and visiting a place where I had a bad episode before.

Jackiesmith7777 profile image
Jackiesmith7777 in reply toJishuang44

I hope your cardio version works as my husbands only lasted for 10 days then straight back into AF . We’re waiting to see what they say at the next appointment. I’m tempted to say no to another cardio version as they said for him to stay on bisoprolol but heart rate in sinus rhythm was way down to 40 but although tempted to take him off bisoprolol with docs permission I’m glad we didn’t as he went back to AF, we’re hoping he can get another ablation this year although with all the strikes I can’t see that happening . He has had a stroke caused by his AF and now jd aphasia and 50% right vision loss in both eyes and can no longer drive which was a big blow for his confidence , as well as his communication problems and getting used to his sight loss.

DiyChas profile image
DiyChas in reply toJishuang44

If you do have AFib, you may feel much more fatigued.

But you should advise your family they need to help out much more until you see a cardiologist to confirm the medicines you require.

I would also talk to your GP to encourage the cardiologist appoint happen sooner.

The GP should understand enough to know if this is more urgent than first thought.

Pacer22 profile image
Pacer22 in reply toJishuang44

I too was a busy person. My AFib was diagnosed ten years ago and my life changed. Somedays an episode would last for 12hours or more. I felt blessed if I’d convert in a few hours. I would feel completely drained and my legs were ( mush).I had to cancel many appointments etc. I’m sure my family was tired of hearing AFIB. I tried almost every prescription to no avail.

In 2022 I went to a different cardiologist and he recommended Pace and ablate. The pacemaker was implanted in May and the AV ablate in September. Even though I’m told I still have small episodes I no longer feel them. I feel I have my life back. Having AV ablate is a big decision , but it has been a winner for me. Good luck with your journey.

Jishuang44 profile image
Jishuang44 in reply toPacer22

Thanks very much for this. My cardiologist says that ablation will be next if the cardioversion does not work; as I don’t tolerate drugs well he does not want to try amiodarone, which I’m quite relieved about. I’m not a candidate for a pacemaker as I have dilated cardiomyopathy (they were nagging me to have an ICD but that is rather on the back burner now).

Teresa156 profile image
Teresa156

Hi MyFlowers2,

You are on a very high dose of Bisoprolol and it could possibly be that, that is making you feel terrible. Not the AF itself.

Are you constantly in Afib? Have they given you this amount to keep your heart rate down?

Myflowers2 profile image
Myflowers2 in reply toTeresa156

Don't know if it's permanent I do have it a lot. Mentioned about the Bisoporol if it be that but he said no. I have been on 2.5mg for 10 years after a heart attack so I should be used to it. It's the funny feeling in my heart that makes me feel ill. I also get pains in my muscles at top of chest near arm pits is this normal with Afib ?

Teresa156 profile image
Teresa156 in reply toMyflowers2

Hi Myfowers2,

I’m sorry to hear what you are going through with pains. You aren’t what they call permanent as you have to be in constant Afib for at least a year and have to agree that there is no way forward to get back into sinus rythm to be called permanent.

There is a lot of info in the internet about afib generally and it might be worth getting a general feel of the condition.

Do you know your heart rate? A lot of us have monitors, where we can take our own ECG readings -there are devices called Kardias that are easy to use? We also wear Fitbits or Apple Watches which can tell us we are in Afib.

You shouldn’t be feeling any pains when you are in afib though, breathless perhaps or shakey and tired, but no pain. Does your doctor know?

If the pains persist, you should see someone soon?

BrotherThomas profile image
BrotherThomas in reply toTeresa156

I'm not sure that patient agreement is always required for a diagnosis of permanent AF. Like so many things to do with the Nothing Happens Soon, it's probably just a postcode lottery. In my case, my cardiologist has told me that he doesn't want to see me again and I have no diagnosis beyond "you have AF ". I also have no prognosis and no care plan beyond "keep taking the pills ".

Teresa156 profile image
Teresa156 in reply toBrotherThomas

Ok Thankyou. I quoted what I have heard and have read on many sites and on here as the difference between ‘persistent’ and permanent, but I do take your point.

It’s an agreement on both sides I believe after having constant AF for over a year. Not just the patient and perhaps your cardiologist thought you’d agreed, because you accepted his outcome. However, in the poster’s case, she cannot be permanent yet, as she has only just started suffering from Afib and I just wanted to let her know.

Fullofheart profile image
Fullofheart in reply toTeresa156

It is important to know there are options. I agree. I don't think the times pan of a year is a hard boundary.I had constant AF for over a decade, plus 10 years before of paroxysmal and very luckily EP agreed to ablate last year. Took 3 attempts but I am now in NSR....so it can happen.I appreciate this is quite an unnusual scenario but treatment can be successful even after a very lengthy period of (completely uncontrolled) AF.

Teresa156 profile image
Teresa156 in reply toFullofheart

That really good and long May it continue for you. I was only trying to explain the differences between the different types of Afib, as best I could so that the poster knew hers couldn’t be ‘permanent’ at this early stage. Appreciate your reply.

NLGA profile image
NLGA in reply toBrotherThomas

That’s where I am I feel a bit disregarded

BrotherThomas profile image
BrotherThomas in reply toNLGA

There's a lot of it about!

FancyPants54 profile image
FancyPants54 in reply toBrotherThomas

That's happened to me. I used to get 6 monthly checks. Then the cardiologist retired and the new one was invisible behind Covid restrictions for a while. I eventually saw him. He tried to hide his yawns all through my appointment and then dismissed me from clinic leaving me on an anti-coagulant and BB. I feel abandoned.

But mostly I don't feel too bad but my pulse goes way too high if I try to exercise. I need to speak to someone about that.

BrotherThomas profile image
BrotherThomas in reply toFancyPants54

Talking about invisibility, I never actually saw my cardiologist in the six years that I was supposed to be his customer. Given what we pay for the Nothing Happens Soon we really do deserve better.

FancyPants54 profile image
FancyPants54 in reply toBrotherThomas

Oh well that's worse than my treatment then. I did have regular check-ups for the first few years. Perhaps because I was young when it started.

BrotherThomas profile image
BrotherThomas in reply toFancyPants54

I think it's more to do with individual consultants attitude than your situation. With my health issues and those of my elderly mum, I've had contact with 15 of them over the years and 13 of them have been amongst the most odious human beings that I've ever encountered. Junior doctors aren't much better, I caught one of them fiddling my mum's test results once. He was a baby cardiologist too!

FancyPants54 profile image
FancyPants54 in reply toBrotherThomas

I know. Repeated exposure doesn't instil faith in medics does it?! It's why I more or less keep away.

BrotherThomas profile image
BrotherThomas in reply toFancyPants54

I agree, best avoided if at all possible.

Slidingdoors99 profile image
Slidingdoors99 in reply toBrotherThomas

That sounds like really bad care to me…

BrotherThomas profile image
BrotherThomas in reply toSlidingdoors99

I'm not too enamoured of it either.

Sweetmelody profile image
Sweetmelody in reply toBrotherThomas

“Take these pills and see me in six months” was all it took for me to ditch a cardiologist after our initial appointment. I was a boilerplate old lady to him, not a real person looking for sustainable solutions to my heart health problems. I found a different cardiologist, one who listened and cared, and about seven months later had an ablation, which kept me happily in NSR for more than a year, and a terrific electrophysiologist who attentively and personally oversees my afib care.

I’d find a new cardiologist were I you. Good luck—something we all need in finding the right cardiologist.

BrotherThomas profile image
BrotherThomas in reply toSweetmelody

At the moment, I'm back in the care of my GP practice and still asymptomatic for all practical purposes. I've been told by the hospital that I can't change consultants without a GP's agreement. So if my situation changes symptomatically, I will definitely be looking for a change.

baba profile image
baba in reply toBrotherThomas

There are thousands of people in permanent AFib who dont even know they have it, have not seen a cardiologist or electrophysiologist, have no symptoms etc.

BrotherThomas profile image
BrotherThomas in reply tobaba

That's very true. I was probably one of them as my AF was initially diagnosed purely by chance.

Dollcollector profile image
Dollcollector in reply toTeresa156

I have pains across the back of my shoulders and in my mouth when in afib.

Teresa156 profile image
Teresa156 in reply toDollcollector

I think that’s quite unusual. You shouldn’t have pain when in Afib and you need to tell a specialist about that.

Fullofheart profile image
Fullofheart in reply toTeresa156

I've always had chest pain with AF. I think it varies across different people.

Dollcollector profile image
Dollcollector in reply toTeresa156

I told the doctors in A&E and my cardiologist. They weren't concerned as the pains go when l revert to n. s.r. Also they had heard of those symptoms before. People get various symptoms, some worse than others. What makes you think that you shouldn't get pain when in afib?

Teresa156 profile image
Teresa156 in reply toDollcollector

I’ve always been led to believe that any chest pains should be investigated further ( in your case, your Drs know)

I know we all get different symptoms with Afib.

Slidingdoors99 profile image
Slidingdoors99 in reply toDollcollector

I’ve never heard of these symptoms. Awful. I’d get a second opinion.

Dollcollector profile image
Dollcollector in reply toSlidingdoors99

That cardiologist is senior, head of the department. The others won't go against him.

Slidingdoors99 profile image
Slidingdoors99 in reply toDollcollector

😔

gbn_ profile image
gbn_ in reply toMyflowers2

Hi Myflowers2. It's interesting in that I too had pains in that same area especially along the left side when first diagnosed with AF. Do you have any swelling anywhere from the AF? I asked the doctors about the pain but got no real answer so I just figured that it had to be from having AF.

Iamfuzzyduck profile image
Iamfuzzyduck

i was just prescribed it as a PIP starting at 2.5 mg and if afib doesn’t stop then 5mg…are you in permanent afib? They took me off daily beta blockers because my heart rate is already slow but I do have many premature contractions so when they happen it totally wipes me out (nearly passed out in the mall yesterday). But the other beta blockers i was taking made me feel bad. I was diagnosed in November…. My sister takes 1.25 for SVT. I am no expert but 10 mg sounds quite high to me…no wonder you feel bad. Can you discuss a dose reduction with your doctor? I have paroxysmal afib…

Myflowers2 profile image
Myflowers2 in reply toIamfuzzyduck

What are your symptoms like with paroxysmal Afib. I have felt pulsing and wobbly in my heart yesterday and it woke me up at 3.40 and hasn't really stopped. Had a Cardioversion in December got to have another E CG next Monday then they are ringing me on Wednesday just got to wait til then. I get pains in my upper chest in the muscles near my arm pits in that area. Do you ?

Iamfuzzyduck profile image
Iamfuzzyduck in reply toMyflowers2

Sorry to hear that. I had one bad afib attack and haven’t had a proper one since, I get irregular beats, premature atrial contractions that feel like a flutter but I monitor my heart with my apple watch. The EP said my heart is trying to go into afib but is correcting itself. So when they get bad I take a beta blocker. I do not have pain, no. I think if your pain is bothering you then you may want to go to the Emergency Department to rule out anything serious..

Desanthony profile image
Desanthony

I felt lousy on any beta blockers - bisoprolol - even at lower dose, verapamil and a few others were tried beta blockers, calcium channel blockers ad any type of rate control medication made me feel worse than the AF - I cam off them and just take anticoagulants now and feel much better. You should ask for a review of your dosage or medication a change in either could be for the best or because you feel so bad on the medication see about getting an ablation.

Good Luck

Myflowers2 profile image
Myflowers2 in reply toDesanthony

Do the ablations work?

Desanthony profile image
Desanthony in reply toMyflowers2

Usually in UK Dr's try to control via medication first - if this is not successful or the side effects of the medication are too bad even when dofferent dosages and types of medication have been tried then with the agreement of your EP maybe it is time for the next step. Cardioversion usually first. If a cardioversion works - even for a short amount of time it points to an ablation working too so signposts the way to go. Sometimes more than one ablation is necessary.

Sweetmelody profile image
Sweetmelody in reply toDesanthony

I, too, feel much better now that I’m off drugs that are supposed to control my heart rate (but don’t). Metoprolol and diltiazem both made me feel crummy and had no affect on lowering my bpm, but did lower my already low BP, which was not what we wanted.

I’m on Eliquis and just marking time until my upcoming 2nd ablation, the only viable way forward I can see. Drug therapy has not worked for me.

I’m clearly not the only one—but there seem to be cardiologists who put all their eggs in the drug basket, convinced drugs are the answer for everyone. They are not.

Buffafly profile image
Buffafly

Alternatively you can be offered ‘pace and ablate’ and at your age it is the one I would go for. A pacemaker is fitted and some weeks later when all is running smoothly the node between the atria and the ventricles is cut. The pacemaker keeps the heart in rhythm while the atria can do the tarantella if they like and you might feel it slightly but you should (most people do) feel fit again. Best wishes ❤️‍🩹

Myflowers2 profile image
Myflowers2 in reply toBuffafly

Oh to feel fit again. Thank you for replying

Afibtastic profile image
Afibtastic

2022 when my AF seemed to get worse I was changed from Ca channel blocker to Bisoprolol 10mg per day. I had the worse 3-4 months of my life. Cardiologist would not agree that the medication could do this. So monitoring BP and HR I started reducing dose. BP rose a little but now I take 1.25mg and 4mg ARB per day and feel much better. ARB made things worse as well. I seem to be sensitive to these things. Taking 25mg Flecainide before bed gives me weird dreams. I'm just a sensitive guy but in the wrong way. I surf, SUP, MTB (in moderation) and walk but when these drugs were affecting me some days I would walk for ten minutes and have to stop. Some days I really didn't think I was going to make it through the day. I don't understand the Cardiologist arguing that the drugs were not a problem. I then started with Dr Google and found forums and realised that it is a thing. So now my BP is never 120/70 but I feel much better. Even when in AF I can walk for an hour or ride a bike. I really hope you can sort it out. cheers

Dollcollector profile image
Dollcollector in reply toAfibtastic

Why do cardiologists insist that beta blockers don't cause your exhaustion when thousands of patients say they do. It makes me so angry. They need to try them themselves and stop dishing out the beta blockers automatically, especially bisopropol.

Sweetmelody profile image
Sweetmelody in reply toDollcollector

I agree! It’s so refreshing to hear someone else say what I myself know to be true!

Sweetmelody profile image
Sweetmelody in reply toSweetmelody

And the next time a cardiologist tells me blood thinners are the wonders of the world, I’m going ask them if they are on anticoagulants, and if not, point out that anticoagulants significantly affect quality of life.

I practically supported the bandaid industry during the years my husband, 12 years my senior, was on anticoagulants, which also limited his recreational outdoor activities due to the dangers of falls and bleeding.

Anticoagulants (warfarin in particular in his case—I know the new DOAC’s have fewer bad effects) were implicated in his developing aortic stenosis, causing a valve replacement, which led to multi-infarct dementia (a cardiologist surmised that small sections of his brain were being killed one by one as dislodged calcium bits from the valve surgery seeped into his blood system and caused clotlike blockages that anticoagulation has nothing to do with.).

As if dementia related to longterm anticoagulant use wasn’t enough, he had a stroke at 90 while on Pradaxa, which has since been found to be dangerous and contraindicated in people with heart valve replacements.

Don’t tell me anticoagulants are simple, harmless wonder drugs. Are they necessary for some of us? Yes—but something like 100 of us taking Eliquis prevents strokes in 5 people? Don’t quote me, but it’s something like that. I don’t know about those odds. But I take my Eliquis daily. Anticoagulants do statistically reduce stroke rates.

Do I want to be on anticoagulants for the rest of my life if there is an alternative? No way. That alternative for me is a Watchman device (there are other surgical procedures too). I’m getting a Watchman implant during my Feb 6 ablation for atypical aflutter. If all goes well, I’ll be off all drugs within 4 months or so, including Eliquis. That would make me extremely glad.

bean_counter27 profile image
bean_counter27 in reply toDollcollector

Metoprolol is a beta blocker and according to NHS website one of its common side effects is feeling tired, dizzy or weak. Isn't that exhaustion? One of the actions of beta-blockers is to slow down your heart. So presumably it isn't responding normally to your body's demand for oxygen as your activity increases. Wouldn't that make you feel exhausted?

Dollcollector profile image
Dollcollector in reply tobean_counter27

I agree with you. If a drug makes you feel worse than the condition you have; what is the point of taking it? Since a.fib cannot be cured, it is all about quality of life..

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Mine was changed by another H/Specialist.

Bisoprolol was taken from 2.5mg up to 10mg.

But I remained uncontrolled with H/Rate Day.

So the new private introduced CCB Diltiazem. The 180mg too much. And of course I reduced Bisoprolol. I followed the nurse at our NZ Heart Foundation.

Reduce Diltiazem as I dropped from 156bpm Day to 51.

So completed a different regime of meds..

Diltiazem 120mg AM for H/Rate

and

Bisoprolol 2.5mg PM for BP.

Losing 6kg over last year I further dropped 88-96 to 60s. The Public Cardiology was happy with my meds and on the day..

140/69. 80. but ECG showed 120/69. 63bpm. I was talking later.

No talking or moving Relax.

Giving your BP and H/Rate at Rest helps with our answers.

Cheri Joy 74. (NZ)

FedupwithAF profile image
FedupwithAF

Hi My flowers, likewise I've been on 10mg for a number of years, the dreaded AF is controlling every aspect of my life, I'm convinced my trigger is connected to stomach problems, bloating, excessive wind, gastroenterologists prescribed Maalox with the cardiologist suggested I needed a new pair of glasses......... to look at life in a different way... true story!

Hammerboy profile image
Hammerboy

I have had 2 ablations , the last about 18 months ago . My episodes were regular but mild with a HR under 100 BPM . To be honest they were scary at first but once I got used to the randomness and knowing it wasn’t going to kill me I just rode them out

Since my last procedure I’d only had about 2 episodes very short lived and mild again until about late November when I had one lasting 3 hours , another 5 days ago lasting 2 hours and one yesterday lasting an hour and a half . I’ve had a nasty cold since mid December so I hoping that’s why they have occurred plus I’ve been using Sudafed nasal spray to relieve my painful sinuses .

I have no idea if this is going to continue but I’m grateful the AF is bearable and short lived at the moment . It must be very hard to suffer much more uncomfortable symptoms.

bobify profile image
bobify

Hi sorry you are feeling bad but I know exactly how you feel I have felt crap for over a year know having afib episodes every day I am also on 10mg bisopralol have been on for years and always wondered if some of the tiredness came from them but my cardiologist says stick with it along with the multiple tablets I am on ,had a cardioversion but sadly for me only lasted a week so on the long wait for an ablation,it's hard to keep going I know some days you feel like giving in just keep going take care fingers crossed we will get there

Jackiesmith7777 profile image
Jackiesmith7777

well believe it or not when I phoned the heart function nurse to say my husbands heart rate had gone up a bit she put him on 15mg of bisoprolol when she had already put him up to 10 , we tried it for a couple of weeks and he felt awful , really bad anxiety sleeping all the time . He is now on 5mg which he takes in the morning and is much better in himself and heart rate has stabilised to around 100 .

Jetcat profile image
Jetcat

i take 11.25 mg bisoprolol daily and feel really tired sometimes.

Cavalierrubie profile image
Cavalierrubie

l think it might be the Bisoprolol that is the problem. I cannot tolerate any of the medications taken regularly and use Bidoprolol as a PIP only. I cannot tolerate the new anticoagulants and Warfarin is the only l can use. Only you know how you feel so don’t be fobbed off. Lots of people have problems with Bisoprolol. There are many alternatives so see your GP and tell him you are not satisfied with how you feel. Best wishes

Speed profile image
Speed

I was prescribed Bisoprolol alongside flecainide Whenever I try to exercise the Bisoprolol limited my heart rate and I felt terrible. In consultation with by EP we agreed to drop the Bisoprolol on the grounds of quality of life. Never looked back.

Tellingfibs profile image
Tellingfibs

Hello Myflower2. I am 72, with paroxysmal Afib. I take Warfarin and the same dose of Bisoprolol as you. My dose was raised a couple of times until it reached this dose, each time because I had sessions of tachycardia. Not very fast like some people but enough to make me personally feel rubbish. I have been very glad of the Bisoprolol, and it suits me well, apart from sapping my energy a little and making me feel dozy when I am sitting and relaxing. Mind you, in the sneaky seven years I’ve had Afib, I will have aged naturally and the Bisoprolol may be unfairly blamed ! As for you, it’s the pain you described that stands out, and I would get the medics to realise you are concerned and they should do something about it or at the very least explain what it is. Also ask why your Bisoprolol dose has been increased to this level. Let us know how things progress.

Annie.

Blueflags profile image
Blueflags

Good morning Myflowers52

I have Paroxysmal AF, or so I think, I have been on Bisoprolol for about five years, starting at 1.25mg and gradually been increased to 7.5mg. Also on Apixaban as a blood thinner. Seven months ago I had a horrible AF attack with heart rate around 220 beats a minute, was blue lighted into A&E (which freaked me out) hooked up to a monitor for about seven hours and kept in overnight.

I was given an extra 2.5mg bisoprolol and basically left. Discharged following day with 10.00mg bisoprolol (one tablet in the morning) and was told to contact my cardiologist for an appointment. Done that but not heard anything yet!!!

I agree with you wholeheartedly, I coped quite well before but I am wondering if the 10.00mg is too much on a regular basis, as I feel extremely tired all the time, no energy, quite breathless. I too was able to go for walks, bike ride and go out with friends for the day. Now I can only manage short walks, a couple of hours with friends and have to rest after doing some housework. It’s the lack of energy and quite honestly I’m not sure how much I should push myself into doing more exercise as I feel so fatigued!!

I do wonder also if my Gastritis has an effect sometimes!. Oh dear, sorry for the rant but sometimes we need to unload. I hope you feel better soon 😟😟

Malcbagpuss profile image
Malcbagpuss

Totally agree with all the comments on bisoprolol. I am lucky in the sense that my afib is persistent but largely asymptomatic. My GP prescribed bisoprolol automatically on diagnosis even though my resting heart rate was around 80 (pre afib 55) and I found that even a modest dose of 3.75mg severely limited my ability to exercise. The main problem seemed to be that the heart's normal response to exercise was dampened so that with moderate exercise I'd be puffing like a steam train but heart rate had not increased significantly. We have now compromised on a dose of 1.25mg which is not so detrimental to my activity levels. I also found that taking bisoprolol before bed gave rise to vivid and often weird dreams/nightmares so now take it in the morning.Nothing to do with afib, but my wife was turned down for a kidney transplant because she failed the cardio-pulmonary exercise test while on bisoprolol and the anaesthetist was unwilling to sanction a serious operation. Subsequently abruptly taken off bisoprolol because they caused a life threatening derangement of blood potassium levels (only a problem because on dialysis) she passed the fitness test and has had a successful kidney transplant. Discussing this with her renal consultant, he mentioned that while on bisoprolol he had difficulty climbing stairs.

Beta blockers may be a very good medication for heart failure but in other conditions they seem to do a pretty good job of mimicking that condition.

Ducky2003 profile image
Ducky2003

3 months of Bisoprolol floored me. My lovely pharmacist explained that it attaches to receptors in the lungs as well as the heart, which made me exhausted and breathless. He suggested discussing Diltiazem with my cardiologist, which I did. Changed over to Diltiazem and ok since (6 years ago) but obviously an AF attack did still knock me about but in a different way.

Obis891 profile image
Obis891

Good Morning, if you mean, tired, drowsy and generally not " with it " it is likely to be the beta blocker. I for one do not tolerate bet blockers and hence do not take them. They are intended to slow your heart. You must discuss it with your GP or other before discontinuing them. Roger

Exfat profile image
Exfat

The point I’m making has been mentioned quite a few times throughout the thread I have PAF and can’t tell whether it’s the side-effects of the medication or the PAF that’s worse both pretty dreadful to live with I’m waiting for my first cardioversion and expecting to use that as the normal medication is no longer bringing me back into natural rhythm any longer

wwatson280283 profile image
wwatson280283

Hi there, I too was put on 5mg of bisoprolol twice a day back in June 22. I was light headed, fatigued and often would feel nautious. This drug was prescribed by an A+E consultant not a cardiologist. 5mg was reduced to 2.5 twice a day and thereafter 1.25 due to side effects.I was then told after a spell of dizziness that I may have a sensitivity to the drug and was put on to a calcium channel blocker, verapamil. After a couple of months I found this to be worse than the bisoprolol. The verapamil was again prescribed by an A+E doctor not a cardiologist.

In January 23 I was seen by a cardiologist privately and after an EKG I was prescribed flecainide. This drug has been better for me but know it has had side effects with other people on this forum. Everyone is different and tolerate drugs in different ways. As many have said the treatment of AF is about controlling the rate but also giving the best quality of life whatever drug best provides that for the individual.

quanglewangle profile image
quanglewangle

We are all differeent and wonderful as some current knowledge and treatments are, nevertheless it sometimes takes some trial and error to find the correct solution. I was unhappy while on Metropolol and was switched to Flecainide which was disastrous with syncope faints and blackouts. Then I was put on Bisoprolol 2 x 5mg a day and 8 years later am still on it with no problems. The syncope faints were identified and I got a pacemaker. OK I rarely run, and often uphill is a struggle, but twice a day I walk or stride out with the dogs with only the odd slow breathless day. I've been in permanent AF for many years, pop the Bisoprolol twice a day and get on with life. (never had cardioversion or ablation and seeing reports on here of their constant failures I am very happy.

NLGA profile image
NLGA

I’m On that same amount but I changed mine to 10mg at night as I was getting tired mid afternoon so much so I couldn’t function without sleep

nakuru8 profile image
nakuru8

Hi there myflowers2 and Joshuang 44I started in 2018/9 with AF and was put on biosoprol. I was on biosoprol 2.5 mg and that was more than enough for me. Eventually I took the problem into my own hands, demanded of my doctor to see a cardiologist and thereafter asked that I had a cardiac ablation. Had it in Sept 22. I haven't drunk a drop of alcohol since and always have drunk deaf tea and coffee.

Not essential that I don't drink alcohol but am aware that it can trigger an episode and I would much rather be alcohol free than have AF. So good so far. Just one episode one week after the ablation and since then OK. Am aware however that it can return but so far I am fine. cardiac ablation procedure worked for me. If you haven't got permanent AF cardiologist may well recommend it.

Wishing you all the best.

Nakuru 8

nakuru8 profile image
nakuru8

Hi there myflowers2 and Joshuang 44I started in 2018/9 with AF and was put on biosoprol. I was on biosoprol 2.5 mg and that was more than enough for me. Eventually I took the problem into my own hands, demanded of my doctor to see a cardiologist and thereafter asked that I had a cardiac ablation. Had it in Sept 22. I haven't drunk a drop of alcohol since and always have drunk deaf tea and coffee.

Not essential that I don't drink alcohol but am aware that it can trigger an episode and I would much rather be alcohol free than have AF. So good so far. Just one episode one week after the ablation and since then OK. Am aware however that it can return but so far I am fine. cardiac ablation procedure worked for me. If you haven't got permanent AF cardiologist may well recommend it.

Wishing you all the best.

Nakuru 8

Ppiman profile image
Ppiman

It depends on what "terrible" means to each of us, but I would have used that word for perhaps four episodes that I had earlier on before and after my diagnosis in 2019. On each of those occasions, my heart rate was 150-200 bpm. It was also before I had scans that showed that, apart from the electrical issues, my heart wasn't about to conk out (which was my greatest fear)! Those scans and the cardiologist's diagnosis truly did calm me down a great deal.

Looking back on those times, I am quite unable to work out how much of the feeling was down to anxiety and how much was down to the physical effects of the arrhythmia. I shall never know.

The last time I felt afraid of things was last March when my rate went up out of the blue to well over 150bpm while I was driving to pick my daughter-in-law up from her nurse's shift. I honestly thought I'd be visiting A&E rather than doing that, but, one way and another, while waiting for her, things calmed down and I soldiered on.

One thing I can say is that much more often than AF, I get runs of heavy ectopic beats, and they cause me to feel much the same as AF. Some describe the feeling they get when in AF as like having a "fish flopping" inside their chest. Well - I have never felt that in my life and I do wonder where the phrase came about. It seems popular in the USA reading posts in their large FB group.

The only advice I can offer you is to ask a specialist or your GP to spend time with you assuring and explaining. It might be that your bisoprolol dosage could be reduced (I take only 1.25mg a day now). There are also alternatives called Calcium agonists, such as diltiazem, that might suit you better. Hearing a doctor's reassurance helped me a great deal even though a fast attack will still send my anxiety levels soaring.

Steve

Vonnegut profile image
Vonnegut

That’s an extremely high dose of Bisoprolol! I was around your age when first diagnosed and the lowest dose of 1.25 mg once a day brought my heart rate down too low! I was told to stop it after three days by the pharmacist who took my pulse and a different doc at the surgery did the same and agreed that I should stop taking it! I’m amazed you were given such a high dose without being monitored!

MaryCa profile image
MaryCa

I felt absolutely awful. I used to have ten hour episodes of afib rvr every three or four days. And then I'd be wrecked until the next episode. Continuously exhausted with no energy for doing normal stuff. I had an ablation last Dec twelve months, and nsr since. I didn't realise how awful I actually felt until I didn't feel awful. My EP took me off bisopropol and put me on sotalol. Exact same side effects of bradycardia, fatigue and brain fog. He eventually took me off sotalol to prove it was the drug causing the symptoms.

Scotheart profile image
Scotheart

I had Afib AND heart failure diagnosed almost two years ago and, like you, have been taking one 10mg tablet of Bisoprorol daily albeit in one dose rather than two. I generally feel relatively well, the only issue being that occasionally - when outside - I start to feel a bit "fuzzy". However, this seems to be small price to pay for the improvements I assume were connected to Biso - like being able to retain my previous long-distance walking activities (albeit only on the flat - no longer on hills).

Jances13 profile image
Jances13

Sorry you are having such a hard time. I have paroxysmal a fib and it’s pretty much controlled by metoprolol Succinate ER . But I have heard about people with a fib taking magnesium and CO Q 10 . Do you mine sharing what magnesium you take and CO Q 10 ? Thank you !

Oldforge73 profile image
Oldforge73 in reply toJances13

Hi Jances13 I take 500mg Magnesium Taurate and 200mg CoQ10 daily. I think it is helping to calm my heart but hard to prove. I purchase them from Amazon. Also on 1.25mg Bisoprolol, low dose as can't tolerate much more, I have low rate Afib and when they put me on 5mg I ended up in hospital while on holiday last September.

Peacefulneedshelp profile image
Peacefulneedshelp

Have you looked up side effects of the drug? Several on this forum have said they too didn’t feel well on it. Maybe you need something different.

DiyChas profile image
DiyChas

The simple answer is talk to whoever put you on the high dosage and ask if it can be reduced.

I felt very lethargic on my dosage and asked my cardiologist if I could try reducing it and he agreed, as long as I checked my heartrate every day to ensure it wasn't increasing.

I have much more energy at the reduced level and heartrate is around 80 for last few months.

Tomred profile image
Tomred

Im in afib as i type since yesterday evening, and feel under the weather, disturbed sleep running to the bathroom fuzzy head, feeling nauseus on and off, feeling weak.

djmnet profile image
djmnet

It's the beta blocker-bisoprolol-that's causing the exhaustion. I was unable to tolerate any beta blocker for those reasons.

Morzine profile image
Morzine

mainly the pounding jumping all over the place heart is my main feature than upsets my well being. I do feel I can’t settle to anything with that thing goung berserk….and I feel dead tired. I guess also it’s the waiting fir it yo stop thst is wearing too….this was my last afib in august.

But years back it was much worse I fekt breathless too and generally bodiliy incapable of much…so I guess it’s varied in it’s beastly ness.

Sue

Morzine profile image
Morzine

also is that high bisoprolol necessary? Agree with the others, I was on onky 2.5 and it zapped me, yet on 1.25….fine.

Sue

PrinzMongo profile image
PrinzMongo

I felt horrible... tired and anxious as I collapsed four times and nearly passed out. Have a Harry Potter scar on my forehead from one of them.

The silver lining was the collapses allowed mu cardiologist to persuade the insurance company to let him refer me for a cardioäblation. Since then, I took a job as a camp cook for two summers in the San Bernardino mountains and roamed the trails taking ECGs on eight 10,000-11,500 ft/3,000-3,500 m peaks to show my cardiologist and EP.

Digoxin was added to my normal valsartan-metoprolol cocktail before the cardioäblation

Beeflower profile image
Beeflower

I have come off it I was so tired and it made my heart rate far to slow , I feel so much better now, and it didn’t cstop me getting AF

julielj profile image
julielj

I'm on 7.5 fir about 6 years now in one dose in the morning. I used to feel very tired but your body adjusts. I am okay these days with it now. I also take digoxin.

Cabinessence profile image
Cabinessence

Hi, I felt exactly the same on that dose of Bisoprolol. I asked to be taken off and was put on Sotalol which had nowhere near the same adverse effects. It's even worse if your afib is symptomatic as opposed to silent like some folk. You could ask for a change or maybe a dose reduction. It's only given to reduce the heart rate and has no real effect on the rhythm problem. If you can get below 100 bpm on a lower dose, that might help with that death warmed up feeling. Funny how some on here have no side effects on biso.

Slidingdoors99 profile image
Slidingdoors99

Yes. Horrible! We folks are known as ‘Very symptomatic’ apparently.

Some people with AFib, wonder how we can feel this way, and I wonder in amazement how come they don’t! 😔

fibnum profile image
fibnum

I do not in any way mean to come across as saying "it is all in your head". I hate that, but there maybe some benefit to, for now, focusing on staying positive, getting into interests and activities and interacting with others to help take your mind off of your heart and relieve some anxiety.

Of course you will not feel normal or have a lot of energy with Afib, but anxiety exacerbates all of the ailments. Decide what you can do to enjoy life within the present context of your energy level and let others know what to expect from you.

It is hard to believe that we are essentially OK when our heart feels so weird and fatigue is bringing us down. I am suggesting temporary measures to deal with daily life, for now.

I hope you find better answers.

LPE44 profile image
LPE44

My background:

An ablation in 2019 for persistent Afib that resulted in a heart attack and kidney failure. A secondary diagnosis of "sick sinus syndrome" - essentially, too slow heart rate. Pacemaker implanted to keep heart rate from going too slow.

Afib was ongoing after that about ~10% until fall 2022 when my heart rate went to 150 24/7. Did a 2nd ablation in February 2023. Afib after still ~10%.

More recently, Afib attacks in the 150 heart rate range....

Ok, let's talk about different types of medication and what they do...

Blood pressure meds;

Bisprolol - it seems to be a common med prescribed in the UK

Lisinopril - first line blood pressure med in the US (can cause dry cough even after months or years of use). I did not do well on this drug and got switched to the following..

Irbesartan - another blood pressure medication that I seem to tolerate fairly well.

Heart rate meds;

Diltiazem - This definitely reduces my heart rate when it's beating too fast but it causes me to feel tired and also gastrointestinal issues.

Heart rhythm meds;

Flecanide - I am supposed to take it twice a day but only take it once at night as it makes me feel tired and dizzy.

Mostly, if I am not stressed, the blood pressure med (Irbesartan) and rhythm med (Flecanide) work to keep my Afib in check. I was able to start exercising again after four years - albeit slowly. But I recently started working and with the added stress, I've had to take Diltiazem again when my heart rate pushes up to 140+.

Personally, I realized that I had to experiment with meds, how much, time of day taking them and also my life-style. I know that trying to get to work in the morning might be stressing me out too much so remote work might be a better fit.

I will say this - I was afraid for too many years. Dying, even in an ICU, will do that. But even small amounts of exercise helped me gain back my strength, reduced side-effects and generally helped me feel better. Plus not being afraid of experimenting with medications - amount, time of day taken, etc. Once I realized that as long as I was on a blood thinner to prevent a stroke, Afib wasn't likely to kill me (again) - especially since I had a pacemaker to cover the sick sinus syndrome - low heart rate.

wallymac1127 profile image
wallymac1127

Bisoprolol May be a good drug if you can tolerate it. If I were taking 10 mg per day I would be a zombi. I was on 5 mg per day and I am 6’6” and weight 220 lbs. My cardiologist just would not let me diminish the dose and I started to feel under appreciated and super frustrated. A different cardiologist listened to my complaints and minimized my dose and life is now WAY better. Unfortunately it was a year of my life that was ruined. Your dose seems extraordinary to me.

Alphakiwi profile image
Alphakiwi

Im on 120 diltiazem for Aflutter at night and i feel rotten much of the time. Doctor is trying me on 40mg verapamil as pill in a pocket whenever. Not much diff yet but may be early

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