I'm only 5.5 months on from being diagnosed with constant Afib & HF. I've seen posts on this forum that have mentioned rhythm control drugs & chemical cardioversions, which has naturally led me to wonder why none of the 7 drugs I'm told I need to take include an anti-arrhythmia drug.
Are they normally prescribed or might it be because of my heart damage & weakened heart muscle?
Is rate control more important & beneficial to us than rhythm control, or is it just that it's more difficult to control rhythm with meds than it is rate control?
Each time I've had an ECG, which has been a regular occurrence recently, I've been told that my bpm have been jumping all over the place, going from low 60's up to over 100, surely that must contribute greatly to exhaustion?
5.5 months on I still feel absolutely exhausted but no matter how often I repeat this to my cardiologist, hf nurses or Gp,
I'm told to persevere with meds, newest one being entresto started two weeks ago.
When I saw cardiologist last month I asked him why I hadn't had a cardioversion yet, since I'd received a letter informing me that I'd been added to the waiting list only a couple of weeks after being discharged from hospital last September.
He then said it might have been because I wasn't taking the correct blood thinner so he changed blood thinner, but surely that should have been picked up on months ago?
Five weeks on I still haven't received any news regarding cardioversion,
yet I've seen others post on how quickly they received a cardioversion after diagnosis.
I am aware that a cardioversion is more of a stepping stone to see if I can be put back into NSR & to also see how it will impact my symptoms.
The constant fatigue is really getting me down now because it massively impacts QOL for both myself & my family.
Feeling frustrated, low & exhausted, please don't suggest private, should be obvious that most would if we could.
- Thanks Michelle
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Butterfly65
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Any and all treatment for AF is primarily for quality of life (QOL) but rate control is the most important thing. Most rhythm conrol drugs such as flecainide.or propafanone are not suitable for anybody with structural heart problems.
Yes anticoagulation is vital before even thinking about cardioversion but there is no difference which anticoagulant you take . All five do the job perfectly satisfactorily. It may be that the term blood thinner is the confusion here as anticoagulants don't thin blood at all. They slow the clotting process. The term can also include aspirin and clopidogrel , neither of which are anticoagulants but anti platelets and neither are useful for stroke prevention in AF
Thanks for your response. I don't know if you're correct about heart rate being the most important, but what I do know is that from having a heart rate recorded at180 bpm to one that now jumps from 60 to 100, hasn't made an awful lot of difference to my symptoms but I'm told the cocktail of drugs I'm given can also cause fatigue, so don't know how I'm supposed to know if my symptoms are caused by the drugs, the HF or the Afib.
If I had to describe how differently I felt today compared to what I felt like when I was admitted to hospital,
the biggest differences would be that I don't have the severe oedema I had back then, the palpations have significantly decreased & I'm not as breathless at rest,
but as for the fatigue & breathlessness on exertion, I don't see much of an improvement if I'm honest.
Regarding anticoagulants,
initially I was prescribed Edoxaban 30 mg one daily then changed on the 9th of Jan by cardiologist to Apixaban 5mg x2 daily.
If as you say, there's no difference between them, then I'm wondering why my cardiologist changed them.
I thought there must have been a good reason for not being prescribed rhythm control drugs but am going to ring HF nurses next week to enquire about that & to ask about a few others things on my mind.
Like so many others, I'd just like to know if I can be put back into NSR,
& if it is possible, even if it only lasted a matter of days or even a few hours, how differently It might make me feel re my symptoms.
Funnily enough I think you said something along the same lines with regards to my MRI post, where after almost a three month wait for results from Papworth, it turned out my afib blurred the images badly.
I'm starting to get a bit paranoid now, would you blame me?
You are so tied up with your NSR stop and consider.
I started with beta Blocker. Metopolol. No follow up Stroke Embolic - Day avg and couldn't exert 186 bpm by monitor. Breathless and pauses of night on my normal 47bom no breathles or pauses. It made me a zombie. Sleeping and more sleeping after little exertion.
Demanded a heart specialist whi gave me above heart monitor. Gave me ECG and ECHO to see my heart situation.
Changed instantly to Bisoprolol but 156bpm avg. Improved but not controlled. Left me there even though she read my monitor report.
8 months on that. New Locum at my clinic. 80 year old lady Dr who had had AF.
She sent me to a reknown Heart Specialist. He read all my reports etc.
Did the vital readings and istened to my heart. 130 at rest.
I was to change to a CCB Calcium Channel Blocker. I reduced the Biso.... to 5mg.
Our NZ Heathline Dr spole to me as I was in a panic. H/R dropped from 167 to 51 on 180mg CD early morning. Biso.. was reduced to 2.5mg.
Rung NZ Heart Foundation three days later. Nurse had worked under Mr Wong my private H/Specialist. She said to separate the CCB and BB by 12 hours.
Also she said she would help in changing down my 180mg to 120mg.
This happened. From then and losing 3 kg H/Rate was 60s rising mid 70s by pm.
2.5mg pm. Biso was reducing my BP.
Happy for 3 years. No cardioversion, mo ablation, no anti-arrhymic meds. Why I have a severely dilated left atrium and a quite systollic heart murmur found in 2023.
3 years on Diltiazem 120 CD mg.
Sopped Biso.. from December. Better sleeping pattern Night and less fatigue. Walking further. H.Rate 74-90. Day. Night stays at 47avg bpm.
No operations will be carried out until that H/Rate is controlled.
Now Diltiazem works also as an anti-arrythym med but its safer. You imagine a heart beating over 100. Its too fast and the electric responses are too much for the body and it will tire you.
So first steo is to control your heart rate.
Rhythm is secondary. How it beats? Well, its irregular,
Pauses, changing from normal to irregular is different and you would feel the change.
Steady irregular is good because there is no change.
Quietening your beat and slowing it is CCB with me so less sweating or no sweating whilst I carry out my tasls.
In my case they know that rate control needs to be worked on first and for me they can't see ny way to control rhythm safely.
I have accepted it.
Is your drop in H/R at rest - night.
You can see mine does that. And by night CCB run out of doing a job allows it to stay there.
Just to be clear, first - rhythm control drugs aren’t suitable for you because of your heart structure, second - apart from Amiodarone they don’t work unless you are already in NSR. Apixaban is thought to be slightly superior as an anticoagulant because it is taken twice a day, thus achieving a slightly more steady state of anticoagulation. Do let us know how your conversation with HF nurses goes.
Would have been nice to have been given this simple explaination during my last appointment though. Strokes did prematurely end the lives of four of my paternal aunts which cardiologist is aware of, as well as my mum having a cardiac arrest & passing away at just 61 so maybe my cardiologist is just being extra cautious.
I am just shaking my head at your doctor and all I can say is find a new doctor ASAP. The fact that not on an anticoagulant really disturbs me. Before they were even sure of what was going on only with what they had already I was put on an anticoagulant and I forget my other one now. I am thankful to be on the anticoagulant I will be on it for life I am told and I continue to take my metoprolol succrate twice a day 50 MG and that is with my pacemaker. Because I was ignored by my doctor and foolishly I didn’t help myself as I was dealing with tachycardia close to 200 on a constant basis. I ended up with heart failure. I am so thankful I was on the anticoagulant. I don’t think I would’ve been here now otherwise. I had an implanted and my EP never had it read. I had moved from Florida that previous October he met me in April. Long story own procedure on was supposed to be well known for at one of the top hospitals in the world, especially in this country the USA. Life life is funny. It was thanks to my mail carrier lady also that I am here now. We used to talk. I would be sitting on the porch with my dog. I didn’t know where to turn for another doctor. The doctor I had specialist would not return my phone would his a whole other story. She told me about a close to where I lived that her parents used. Thankfully, I went to him. He had have my first cardioversion four days later. Before I was fully awake, I knew I was better. I was down from 200 to 82. I remember looking at the in the hospital. I could my brain I felt like a new person. My doctor teased that it was the cocktail they had given me lol. NSR is I got home. I was able to take my dog out. I was walking around like there was nothing wrong with me. Sadly, it only lasted 3 1/2 weeks but I have no regrets. It was the best 3 1/2 weeks ever until I got my pacemaker.
sometimes I think we become a blur if they let us because they see so many and do so many procedures I never had a cardioversion until the end they had a plan to put me on a medication and keep me in CCU for at least five days to be monitored 24 hours because it’s that affect people differently. That cardioversion went terribly wrong. I do here many people have had several quite early in a fib. my EP‘s have all started with medication then ablation then things got complicated with because of the unusual ablation. I was not able to get another ablation. My EP would not consider it my new EP that I adore. Because of the one that messed up the scarring would not allow another. Doctors really say anything about He didn’t really say much but more than once I heard discussed in his voice when he mentioned the other doctor, the EP who was supposed to be a rockstar written about, etc..
don’t tolerate anyone I know it used to be normal not to question a doctor. Some people question everything I like to remind them they didn’t go to medical school and all the things that an needs to do however, you do know your own body.
I have a pacemaker besides being on my meds I still get breathless, and I still have fatigue not all of the time I have not had breathless for some time, except for the fact that I am recently getting over some type of viral thing that I had for almost 2 months or more at this point, I am also about to be checked for the possibility of having pericarditis again. It can be subtle. I seem to get it whenever I have a procedure I used to have they checked you for that? There is a. simple fix so don’t panic if you ever do get told you have it. I get breathless have a dull ache usually and yes, I’m exhausted.
I don’t know how old you are. I am 72 and I’m finally trying to make myself realize that I am 72 because my head wants to be 35 lol.
so many variations because we are also different. I don’t understand the treatment that your doctor but I go to school either.
i’m afraid fatigue is just going to be part of my life now it depends on what I’m doing if I have a long day and I do too much it seems like as soon as I get home I can barely get to my bed and I fall asleep. every day it seems like I need a nap. Our bodies are not the same, not just because of a fib, but think about how much it has been through. I am a visual person and I think about my poor little and how tired it must’ve gotten when it was constantly being beaten up by a fib. I also have heart failure, but that has improved. Ejection rate was 40. It’s 70 now so you can get better. My EP said neither I or my heart could take anymore, which is why I got the pacemaker and AV mode ablation, which is much different from the other others FYI
make sure you get answers please waiting six months could have killed me because of the heart failure, etc. I know when you’re fatigued and hurting it’s hard to push yourself to do something but you need to I know.
if no one ever told you just be aware that whatever you get done whether it be an ablation or a pacemaker there are times to feel a fib or flutter. Just about everything they do is a Band-Aid to give us relief. The difference with the pacemaker and AV node is that it no longer does damage to my heart.
it seems like a lot of people on here get an ablation cardioversion and they think well. I’m all better now. Shame on the doctors that don’t clarify this because it is scary. If you continue getting it when you think you shouldn’t have it.
I just want everyone to not be afraid a fib doesn’t have to be scary but they need to make sure that that’s all it is and you need to be treated right. Doctors know it’s not one-size-fits-all so they need to make sure they pay attention to that. I had a doctor that did I never thought I would feel normal but I do it’s just that old thing I don’t like lol other than that, I’ve gotta tell you I feel really good most of the time as I said before, I never thought I would feel this way again, but I do remember the mind-body connection positivity is healing
That was probably a bit too simple really. People who have paroxysmal AF can sometimes take an antiarrhythmic (usually Flecainide) when they go into AF and it can kick them back into rhythm, but doesn’t work on persistent AF.
Butterfly65....interesting to read your first paragraph as I have recently found the same. My rates in AF were always high/very high until the episodes I've been having since my ablation (no 5) which are surprisingly low...60 - 80 ish yet still leave me breathless and fatigued! These rates are similar to my NSR rates.
Knowledge is the key and you need to chase everything in my experience, just waiting for the system to get to you can delay the treatment that might help you.
Thank you for your response, the link & your best wishes. I have read quite a bit from that site thanks to Bob providing me with the link a little while back but hadn't read that particular sheet.
You're right about chasing everything & knowledge, I'm going to ring Hf nurses next week & also the department at hospital where cardioversions take place to see where I am on their list & to ask to be considered for any cancellations.
The usual anti arrhythmic that can be used for those in persistent AF to prep for cardioversion is Amiodarone, however it might not be suitable for someone in a fragile condition as it can come with various very serious side effects, some of which are irreversible, so adding to your problems. It has been a wonder drug for some but it’s a bit of a gamble!
Only your doctors can explain why they haven’t done a cardioversion yet but it seems that they are concentrating on treating your HF at the moment. I think, and this is only my opinion, that CVs don’t tend to stick when the heart is in bad shape. I don’t entirely agree with Bob as knowing the latest finding about the long term effects of AF treatment should also affect length of life. The usual caveat is that applies to uncontrolled AF so 60-100 is ok but to me it’s also the variability that affects how symptomatic AF is.
Thank you. Yes, my cardiologist did mention that particular drug but he said it wouldn't be a good choice for me because I also have hashimoto's but he failed to mention other drugs used for rhythm control.
I have Hypothyroidism. I was put on Amiodarone post sucessful heart surgery for Afib (mini maze)......supposedly for 6 weeks. It was stopped at 4 weeks as it totally messed up my thyroid hormones. Since stopping it it's taken me over 16months to get my thyroid hormone medication back in balance....just about there now. If I ever need a serious drug like that again I would ask about Dromiodarone .....this doesn't affect uptake and conversion of thyroid hormones.....but also carries other serious risks like Amiodarone does. One of the effects Amiodarone cause is poor conversion and uptake of thyroid hormones which resulted for me in a fast variable heart rate rarely below a 100 and intolerance of my usual dose of thyroid hormones. Scary times.....but as my EP predicted settling right back down into low 80s once I could get my thyroid hormobe tolrance vsck to normsl and the effectsnif Amiodarone wire off (lasts many months).. Miracle for me. It's contrary indicated on NICE guidelines too for pre existing Hypothyroidism.
A lot of the heart drugs that control rate inhibit thyroid hormone conversion and/or uptake T4 to T3. This is how they slow the heart down. This includes Beta blockers. I ended up on Verapamil a calcium channel blocker which is heart specific....ie slowing thyroid hormone conversion in the heart.... I felt much better on this drug but fatigue is a common side effect because of how these drugs work.
Yes there is- It's called minimally invasive maze operation. It's keyhole surgery. I had 3 tiny incisions either side of my chest (under the arms.) My scars are tiny. There is no cracking open of the chest. Instead everything is done with cameras and instruments inserted through these incisions under the ribcage and is performed with the heart beating. It's highly skilled cardiothoraisic surgery so very few surgeons are able to do this. My surgeon Mr Hunter said his sucess rate is 86% with persistant Afib.
I expect I'd need to have at least one successful cardioversion & maybe several ablations before I'd even be considered for this kind of procedure, & might it also depend on whether it could be done on someone like me with HF & with a low EF?
Thanks, I might message you with more questions within the next few days if that's ok with you & so sorry to learn that you had such a dreadful time with your thyroid after taking the drug Amiodrone for such a short period, maybe this is why I haven't had a cardioversion if this drug is also used to help maintain NSR after a cardioversion?
My daughter was diagnosed hypo aged just 14 so I do know how important it is to be on correct dose of levothyroxine.
It must have been a very worrying time for you & your family, pleased to hear you got through it.
Yes feel free to message me. 😊I did not have a cardioversion or an ablation before this op. They were deemed as unsuitable for me by my EP. So it's not true that you have to go through other proceedures first as a matter of course before you are eligible. It all depends on needs and what is likely to be the most effective for you. The downside of this is if your EP is not familiar with a mini maze option.
Dronedarone doesn't affect the thyroid hormones. Also regarded as highly effective with managing arrhythmias.....but it also has other potentially serious side effects. It's doesn't have a long half life like Amiodarone either...a mere 2-3 days. Amiodarone also has the potential for serious side effects. It's known as the drug of last resort for good reason. You are issued with a card and check up booklet that's meant to be followed.
Thanks for your helpful explanation. Yes, I was prescribed digoxin from the get-go & still taking it. Do all afib procedures rely on Amiodarone to help maintain NSR?
i’m not sure why they go to amiodarone first I was covered with a rash before I left the hospital because after my ablation, they gave it to me in a huge IV bag. The longer I took it the worse I felt they had said I needed it for six months. Evidently I didn’t tell my doctor strongly enough how bad I felt when I finally saw him. He pulled me right off of it within days. I felt better. It has been over four years now since my adventure with a fib started it seems like yesterday I woke up on the floor for the first time blacking out from it. I remember everything that was done, but honestly except for the miserable feeling from a I don’t remember other pain whatever they do the I guess it may be because it is through a catheter. Usually, you don’t get a lot of pain. About the worst I had was after the AV node and it was a miserable headache for about four days. I think that’s pretty good if that’s the only pain I can remember. The hardest recovery from that was keeping my left arm still. One of my nurses suggested someone pin the sleeve to my side so I can’t flap my arm lol I asked her how am I going to talk I’m Italian. I talked with my hands lol I try to find funny and positivity. I think it’s one of the best medicines there are.
There is a second benefit of rate control drugs - they reduce the force of the beat which helps protect the heart’s walls from damage, enlargement, scarring etc.
Most people aren’t unfortunately. People focus on how slow their heart rate is and don’t realise the benefits of not having hard, faster beats.
My doctors are focussed on preventing damage to my heart, which is currently structurally great aside from two mild-moderate valve leaks. I don’t have any calcium in my arteries either and have never had high cholesterol. Instead I have a genetic conduction disorder and the primary aim of my treatment is purely to stop damage to the heart. 🤞🏻
Edited as you probably don’t want to read my entire life story. Haha
I was being monitored from the age of about 35 as my GP felt there may have been a genetic cardiac issue in the family given my mother experienced her first cardiac arrest at 38, and several others had also died young.
I played sport and was slowing down in my 40s and wrongly assumed I was just ‘getting older’. My regular testing was always clear.
In my early 50s I began to experience various arrhythmias including AF. My AF is short lived though - only a minute or two. It’s not a concern for my drs specifically and I only know I have it because it’s been caught on ecg. It’s the ventricular arrhythmias they’re most concerned about, including my left bundle branch block and in October I was diagnosed with coronary artery spasms as well. I’m now 58.
My brother’s issues started earlier. He had a valve replaced in his 40s and defibrillator inserted in his early 50s. He’s arrested twice due to ventricular fibrillation. He’s 60. Our condition is progressive. He felt the odd flutter over his life but didn’t think much of it.
We have a sodium channelopathy. It’s been diagnosed as Progressive Cardiac Conduction Disease and sino atrial disease.
The issue of quality of life on heart drugs is very much my life now. I had nearly a year on metoprolol which sent me into a zombie-like state, trying desperately to continue some sort of normal life. Prior to that I was on bisoprolol which was even worse. I have just been taken off beta blockers and am now on Ramipril and verapamil. I cannot take a rhythm control drug as I have CAD and a coronary artery stent.
I have been on such a huge cocktail of drugs over the last year or so and my life has really been on hold as they cause me such misery.
I am now on the waiting list for a pacemaker - I do not fully understand why, but there is some suggestion that bouts of bradycardia might be implicated in setting off the AF. However the 48 hour monitor which indicated this was whilst I was on beta blockers which I presume were the cause of the bradycardia.
I feel pretty defeated by it all at the moment as I would like to be able to function more normally, but can see no light at the end of the tunnel - add in lots of pain for other reasons and awaiting a thyroid biopsy and life life feels fairly drab.
I’m sorry you’re having such a bad time of it. I totally understand. Fatigue has been my biggest concern. Ive tried metroplol, carvedilol, bisoprolol and atenolol and we’ve switched each time to try and help with my tiredness. I feel best on Carvedilol which I am currently on.
I’ve always had a low heart rate but have always been fit too. It has obviously dropped since starting on a bb. I’m also getting a pacemaker but my EP doesn’t want to put it in until absolute necessary. At the moment the drugs are holding things at bay for me.
I can’t take ramipril. I was on it for a few years and developed a chronic cough so it was switched to candesartan. I’m also on elequis and imgur plus drugs not associated with my heart/BP.
Hang in there and keep talking to your doctor to find the best drug combo. I also find if I push myself to be active, I feel better. It’s just hard to get motivated!
I don't feel comfortable if my HR is over 90 - 1.25mg biso quickly brings it down to mid seventies where I am happy. I find that a breakfast involving a bread roll raises my HR, my usual banana and another piece of fruit does not. A roll at lunch time does not either. Strange machines are our individual human bodies !
those things can raise your blood sugar. Bob could tell us. I’m not sure that that has anything to do with your heart rate. Also watch your potassium intake.
My electrolytes blood tests have always been fine -I eat either a banana or an avocado every day. I can't help thinking it's related to the position of the vegus nerve - possibly sleeping moves it either closer to the heart than normal and a heavier food first thing pushes it even closer. The same thing happens if I have oats or muesli. I know that digestion raises the HR, but a rate on waking of 70bpm to 97bpm in the space of an hour after eating the heavier food seems excessive, whereas this morning, because I'm awaiting my fruit delivery, I had crispbread and cream cheese,this just raised it from 70 to 76 in that time. So I know how to control it, but I don't know what causes it. I'm going for my annual fasting full blood count in the morning, so I will know in a couple of days if there is anything strange, although the breakfast puzzle has been going on for a long time.
the sad thing is there are so many things that can trigger us until we finally figure it out. It’s gonna happen and then something else will probably do it. L O L. It may very well be how you sleep. I am a side sleeper. But we are also built a little bit different inside. Yours may be closer together who knows. How long does it actually last try not having the oatmeal or whatever it is?
I have gone up to 90 just getting up and taking the dog out then it will settle when you do this is why my doctor said don’t keep checking my numbers one of the worst days that I had with a fib not long ago was simply picking things up off the floor. It sounds crazy, but my dog had decided to dump his bowl of dry food and I couldn’t find the dust pan so I was scooping it up. I was breathless and I could definitely the speed of my pick up. It 68. I actually went up to 97. I believe the vagus nerve has a lot to do with things even the heavier, food, etc., as you things press up against it if you find a common such thing as coincidence. If you think you found what’s doing it then don’t do it. What are you drinking with your in the morning? Could you be bloating yourself that early? I’m just throwing ideas. We are all different in that way so I don’t know what to tell you. It’s a constant experiment and learning curve. That’s why the doctors keep changing meds, etc. they don’t know either. They may know they need to speed something up or slow it down and as mentioned the meds are all good. It depends on how they react to you. it’s not fun. There is a lot of trial and error. I am still grateful for what I have compared to things. Other people do the more I learn and the longer I have it it’s just not that big a deal to me no reason for me to get dramatic and when I get I know it will go away. As I often say, I find it annoying like the mosquito buzzing around you.
if you have problems with meds, please talk to your doctor. taking them if you can’t reach him then if it’s bad enough go to the hospital. I am amazed at the people that decide on their own to stop. Just the can make things worse and please don’t ever not take your anticoagulant. I think the majority of us are on them for life unless you have something like implanted. I considered asking about that but things are going so well I am not going to and I’m not sure I want to depend on something. I don’t know that much about I my pacemaker and how it makes me feel I’m gonna leave it alone.
without knowing a person or seeing them when they are having a bad event it’s gonna be hard to give an answer. Some people are drama queens. Some people are truly suffering and it may have nothing to do with a fib. My mom started out one morning as I was getting ready for work, telling me her finger hurt. It looked OK. I asked her if she had banged it or anything and she told me no. Who could know in a matter of two hours I would get a call at work and when I got up to the hospital, not only her finger, but her entire arm was black and bruised. She was loaded with clots. They took care of her sent her home when the clots were dissolved. Two weeks later I got home from work and she was missing. Yes, back to the hospital this time they thought it was a heart attack. To cut this short, she was loaded with blood clots again because she was loaded with cancer. FYI, you couldn’t get her near a doctor even for a blood pressure check. Dad had died the year before from cancer. He thought he had indigestion.
never assume anything but also remember a fib and flutter are going to be with you the rest of your life with or without a pacemaker eventually. Keep working like you are doing on finding what seems to trigger you sound very knowledgeable already. Positivity goes a long way with the mind-body connection and healing. I like the way you sound. I think you’ve got this.🩷
I'm 82 this year - my PAF is familial, my 4 sisters have it, so did my dad. I would never be without my anti coagulant, my doctor and cardiologist are just a few minutes drive away.I was diagnosed 7 years ago, purely by chance. I live in South Africa, so I have private health care and can get an appointment the same day if I need it. I have an annual echo, my heart is fine, I am just curious toknow what why the foods mentioned affect me at my first meal of the day after eating nothing from 6pm the previous day. It may also be influenced by a compression fracture of my T8, which reduces the body space for internal organs - I did not want theprocedure that inserts a cement into space - I'd rather leave my spine alone !
As far as I know, if there are known issues with the valvular function of hour heart, you usually cannot have anti arrhythmics. But you should definitely ask about this at your next appointment. As for the long wait - well that is the NHS at present. You could always call cardiology and ask for information about expected waiting time. I've done this and they're usually very helpful. At least you'll know where you stand.
Make it clear you're willing to travel (if you can) as sometimes health trusts load shift between hospitals, and also that you're eager to be on a list in case of cancellation.
Hi Michelle, you are having a rough time of it. I suspect strongly things will improve for you. A friend was diagnosed with HF and COPD two years ago and, slowly but surely, his treatment became adjusted so that he is, currently, altogether much better. He doesn't have AF however. AF itself, and especially in some people, has the effect of bringing on a kind of acute but reversible mild HF, or so I have read. Have your doctors determined the likely cause of your own? It seems to me it is not easy for even the best cardiologist to "know" with certainty, however, at least in some (many?) cases. The future prognosis of HF is, therefore, clouded with uncertainty. Also, the treatment of HF is said in the literature to have improved so much in the last few years that any published predictor of the future course is already out of date.
From my own online reading, rate control still seems generally to be considered the better way forward as it is persistent tachycardia that can lead to weakening of the all-important left ventricle, whereas AF weakens, if at all, the atrium. Also, rhythm control is potentially more risky as the drugs are all, apart from amiodarone, potentially "pro-arrhythmic", and, of course, amiodarone brings its own risks (although at low dose, a solid online study shows it to be effective and safe with careful monitoring).
My Afib has always been rhythm not rate, had it for years before being diagnosed, have Dilated Cardiomyopathy due to BC treatment. TBH it doesn't bother me but I do get breathless due to the DCM I'm on the four pillars as a cardioversion didn't work and my consultant didn't recommend further intervention
Are you seeing a Cardiologist Electrophysiologist (EP) who specialise in rate/rhythm control. At 180 you may have been CV in A/E dept. If the rate is reducing, something is working eg beta blockers. Beta blockers can cause you to be breathless in themselves! HR shooting up & down is the AF, for which some are suitable for anti - arrhythmic meds. You most definitely need blood thinners in there. Do you monitor your own BP / are you on anti -hypertensive meds. You can have fluid build up inside before seeing swollen feet/ankles which could cause the breathlessness - if they say heart failure I’d have thought you possibly do need diuretics. Are you by chance asthmatic? You need to also see - have they just accepted the AF blurred the MRI & that’s it?? If you don’t have appointments ask for EP referral maybe
Thank you for reminding Butterfly65 the correct terminology for EP! Mine here in USA has given me hope and encouragement that there are doctors out there who know what they are doing.
Firstly it might help to know what drugs you are on.Could be helpful for you to know what each is for.60 to a 100 is normal.under 60 when sleeping or even sitting too long is also normal.up to 120 when exercising (even walks particularly on inclines) Also Higher when anxious.It is normal to have variations.
I was only ever given rate control.Diltiazem.I lived with paroxysmal 4 years and persistent for over 2.try not to get too anxious.Excercise is good but listen to your body.On my walks I knew every resting place.
Most quick cardioversions are if you go to A& E and they cannot control with drugs or maybe after failed ablation.HR needs to be very high though.I have been to A& E with 180 and not needed.I waited a year for CV but it was at post COVID NHS crisis time.
I don't know about HF with AF.Have you had an echocardiogram yet.Maybe they think your heart is not strong enough for CV . First job is probably improve HF.
Usually drugs, exercise & weight loss if needed.Ring Say how not knowing what is going on is very upsetting and ask what the plan is.
I know how distressing not knowing and the waiting.
I waited over 2 years for an ablation and had to fight & chase all the way.
I always asked nicely and explained how much it was ruining my life.
I dont have the permanent AF but the PIF myself, and hopefully it will not develop into permanent, but can see how worrying it must be if this is the case. when i get an attack i just take 2 x bisoprolol and sometimes takes an hour but it returns to my normal around 55 mark, but it has to be said that they consider it normal for our h.r. to be 60 - 100 anyway, mine is always lower.
Last week after chest xray i ind now that my heart is larger, i dont know why as this time last year it was normal, i have no lung conjestion ever, and am not fat and walk daily, the Dr. said she is doing a B.Test and it is only this that will determine how large or i ndeed if large at all, as Xrays are notoriously poor dignostics she said, but either way i will see my cardio at the hospital, as we all know with AF we have to be on our toes, I am fully expecting that this will be my end eventually, hopefully not yet though, i was lucky was 76 before AF diagnosed anyway, but lost my Mum at 42 to sudden heart attack, her Brother, and my own Brother, so like all things cancers etc, most illnesses are familial. Wht i would say is you seem very up tight with your own AF and treatments, i suppose you realise the worst thing is stress. and the best thing ever for AF is proper Blood thinners taken regularly, i am on Apixaban, this culd help people who have strokes or heart attacks with AF. Suggest you push to see your Cardio for answers as we are all different. Good Luck.
Forgot to add, my GP told me that AF can lead to enlarged heart if allowed to run at fast h.rate either continually or very frequently, and thinks this contribes to my own. but i only listen to the Cardio experts not a GP in these matters, They are good, but honly middle men, not specialists.
Just to stipulate that I'm not a doctor. Very sorry to read about your struggles with fatigue and your frustration. That your heart rate would jump all over the place from 60 to ~100 bps is actually what one might expect for someone who is in A-fib. (You could confirm this by taking your pulse yourself while at rest or from a wearable or a device such as the Kardia.) All which doesn't mean that the rate control isn't working; otherwise you might be getting sustained rates of >110. As others have noted, the anti-coagulation explanation is weird.
First of all I'm sorry to hear your problems. I too have HF and AF - though the AF is now only paroxysmal after 2 ablations. I was on Flecainide which is anti-arrhythmic. But I was told to stop it immediately by the EP when the HF was diagnosed. He said it can only be given if the heart is structurally OK. The HF consultant thought the EP was being over cautious but that was the decision.
If the AF gets worse I am told another ablation is the next step. For now I take Dapagliflozin Spironolactone Bisoprolol, Lisinopril and Apixaban. Are you on those?
AF makes you tired because (my EP told me) the inefficient irrehular rhythm means you get 20% less oxygen coursing round your body as the Heart Rate bounces around. So rate control is very important.
HF brings fatigue too, especially if your Ejection Fraction has dropped very low. But Entresto, which you take, is said to be really very helpful and you'll find lots of people singing its praises on the BHF forum. It might take a few months to work better. 2 weeks isn't long. I don't take it because my HF was caused by pacemaker dissynchrony and a replacement biventricular pacemaker has sorted it for the moment. But I'm glad to know it's there.
Thanks for the info. If we get 20% less oxygen in the body I can't help but wonder why some with afib have no symptoms when others do. All of the meds I'm taking are tagged in my profile.
I haven't seen an EP yet, just a cardiologist, there's been no mention of me seeing one either, apart from waiting for appointment for a cardioversion if that counts.
Seeing as your afib went from constant to paroxysmal can you remember the differences you felt?
It's a lot to take in and the info in there can sometimes can be challenging to comprehend, but give it a try and you can ask me if you have any questions.
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Hospital visit today
Atrial flutter
Heart rate.
I think my first cardioversion failed
