Me again! I’m curious to know what next steps have been for people with AF. I am going to GP on Tuesday and am going to insist I get a cardio appointment again. I’ve seen cardio twice and both times they said don’t worry, lose weight and take the meds. My question is if my meds don’t stop my AF episodes why do I have to take them? I am losing weight but as I have a lot to lose it’s a long process. Also why does nobody care that I have AF? Surely it must be doing some damage to my heart!! I’ve had one Eco and the said my heart was fine but why am I not monitored for changes?? I just worry my heart will become damaged from the AF (I am 46)
Dealing with AF: Me again! I’m curious... - Atrial Fibrillati...
Dealing with AF
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Pingu778
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I think I've read on here (or seen on YouTube) that if you are younger GP/Consultant should not be looking to look at meds as a long term option (particularly for rhythm control). My own experience is HA April, was doing ok then felt completely knackered during the summer and face to face with GP mid September found A Fib (which appears to be persistent). So I've recently had 24 hour holter and echocardiogram (results awaited) and have next Hospital appointment mid December. I'm mid 60's, just under 100kg, trying to lose some weight but I am going to push as hard as I can to at least have a cardioversion to hopefully get me back in rhythm for a period of time and then have a plan for what happens when in all likelihood the A Fib returns. I'm already taking a bucket loads of pills following the HA including beta blocker which knackers me out and keeps my heart rate too low in my opinion (30's overnight, 40's and 50's by day). Good luck with GP and beyond and I'm going to strongly push back if just offered yet another pill .
Your reservations are correct, and it sounds like you're getting rubbish medical advice, and treatment This is not uncommon at the GP level.
Next level up is your General Cardiologist which is hit and miss.
If you want try to nip this in the bud, maybe skip that level and go straight to an electrophysiologist (ep) level. They should offer you solid treatment options for your Afib be it medications that actually work and or ablation.
That said, many find it hard to get to the EP level without a very long wait. Other than making a real pest out of yourself, one option that seems to work is going private with the ep of your choice for the first consultation and then having the EP put you on their NHS list. If you go this route, I'm sure you can get names of good ep's from our members.
Jim
There is a limit to what a GP can prescribe and although I tend to agree with you, if the meds aren’t stopping the AF, why continue to take them? Depends upon which meds you are taking though and you didn’t specify? Are you taking anticoagulants, rate-control and or antiarrythmics?
FYI in UK you can refuse treatments but you cannot demand them that means that your GP, gatekeepers to secondary care, must have good reason to re-refer you. Your best chance of that happening is if you produce evidence of exacerbation and/or increase in symptoms - are you monitoring yourself? As others have pointed out though, nothing to stop you seeing an EP privately cost would be circa £200-300.
As to why there is not more concern - AF is considered a lower priority than cardiovascular disease as it’s not considered immediately life threatening = fewer resources to go around.
Losing weight is incredibly important as any treatment such as ablation will carry much higher risks with much lower chance of success if you remain overweight - it’s difficult I know but please do keep chipping away as it will pay dividends for your health eventually.
Your GP should be monitoring your bloods every 6 months if you are on medication and some people have a regular echocardiogram every 1- 2 years, otherwise it’s down to you to monitor yourself and it’s a good idea to do so, especially BP and heart rates as controlling these will be very important in minimising damage to your heart from your AF.
I’ve had AF since 2007 and haven’t seen an EP since 2019 as if you are considered ‘stable’ cardiology discharge back to GP. The last echocardiogram I had was - I can’t remember when but circa 2016 BUT I have a pacemaker with regular monitoring.
Managing your anxiety is also really important as it anxiety itself will damage your health but it’s no good doctors saying that if they then won’t refer or signpost you to resources that will help you both lose weight and manage anxiety - that doesn’t mean that you haven’t reason to be concerned and not be able to access care.
Good luck
Hi,
In the Cardiac world AF is not the sinister beast it was once .... there are more deserving features of Cardiology that need more attention than AF. In my case, right at the get go, in 2010 ( aged 65 ) when I was discharged from hospital I had a discussion with the Consultant and it was basically, Cardioversion, Ablation or Medication. Cardioversion didn't happen as at that moment when I kept that appointment I had returned to NSR. I personally rejected Ablation for no other reason that I didn't want anyone BBQ - ing my heart, no matter how skilled and well intentioned ... so I chose the medication route to problem solving. Well , I also lost weight and as food was a trigger for my AF I took a Nutritionists advice on diet.
My medication as prescribed at the get go was a Beta Blocker ( Bisoprolol ) and Warfarin. These were in addition to statins and BP meds that I was already on.
Nowadays, nearly 15 years on and aged 80 I still watch my diet. Still watch my weight. Still on Beta blockers ( Sotalol now ) and Warfarin and still on Statins and BP meds - that said, I have actually managed to cut out completely Ramipril with only a very slight increase in BP. Not bad to be able to cut out one item of drugs now. I have an Echocardiogram every 2 years and my GP surgery does blood tests annually. I mentioned I am on Warfarin. I self test for my own INR and report that to my surgery on agreed set test dates ( currently about every 8 to 10 weeks ). No sweat !
But, I do self monitor my own heart health. I use readings from a BP machine, a Pulse Oximeter and my Kardia device. I keep these readings as statistics ( on my laptop and portable hard drive ) ........... not for everybody, but, I don't have a problem as in my working life in senior management I used accounting data and business statistics in my decision making processes. No sweat for me. The point being it would be a very, very, dumb ass GP to reject me when I can produce swathes of data supporting my heart/ cardiac medical complaint. As a result of this my heart is now well tamed and calmed down kicks off once every 4/5 years ....... I just wish my damn arthritic shoulder pain would settle down too, then I'd be a superman.
Good luck.
John
Hi - I think it's hard to find out just what doctors feel about an individual's AF, not least as it can feel so serious and frightening when it happens. Secondly, the time available for discussion with a doctor is so limited that only cursory comments are sometimes given. The only way out of this for many is to pay for a private consultation with a doctor who you would normally see in the NHS and ask for a better explanation during that twenty minutes or so. This is what I have done, but, in truth, it hasn't helped a great deal.
For most of us, I think it's safe to say that, once the heart has been checked as being physically sound, then the fear AF causes can is well in excess of the danger it holds, even over the long term. An elderly friend, for example, in his 90s, as well as my son's teaching colleague in his 70s both have permanent AF and are generally, perfectly well.
AF is a problem, in the main, only with the top left chamber of the heart. Its effect on the bottom of the heart, the very important ventricles, is to cause a somewhat erratic and sometimes fast heartbeat. This is the area that needs protection and is why a rate reducing drug such as bisoprolol is usually the first to be given (along with a stroke preventing drug if required, since in older people AF can create tiny blood clots in the top of the heart).
The symptoms felt from AF by individuals varies from none at all to feeling pretty dreadful, it seems, from reports here. These include a "light"-headed feeling, faintness or unsteadiness, and, most common, chest feelings like vibration or palpitations, sometimes with a racing feeling or a "chest thumps"; some, like me have chest aches and discomfort, too.
The over-riding symptom for some can be severe anxiety as if disaster lies ahead. But it absolutely doesn't. Finding a way to control this fear will help a very great deal. For me, it was having an MRI last June which showed my heart was as healthy now as it was over five years ago - despite all the fun at the top. Knowing two others well who seem to be coping well, also helped me feel less afraid.
If you are getting your weight down and eating a sensible diet then you are doing the very best thing for your heart in general as well as your AF in particular. Other measures are to drink moderately, not to smoke, and to exercise, including uphill walking, daily. Checking for sleep apnoea can be important, too, especially if overweight.
The reason weight is important to AF is because the heart has a fixed number of cells and yet needs to be bigger to satisfy the demands of a larger body, thus it swells and each cell becomes stretched, These stretched cells, apparently, are the ones that become prone to AF, so a smaller heart is healthier. Hearts have been shown to shrink according to body size, although it seems not always, and the reason why isn't clear.
Why you take medicines is to control the rate of the heart, and sometimes to try to stop AF happening; also, some are to try to protect the lower chambers. In my case, I take a blood pressure drug even though I have normal blood pressure as this has been shown to prevent the heart from weakening.
Steve
Hi
Yes, you are young.
It happens a lot more in those over 60 years.
Weight loss is number 1 so we are so glad that you are losing weight, no smoking and quit alcohol.
Losing just 3kg brought down my heart rate 20+ notches.
Being overweight can cause AF along with inflammation.
You are on the right path now and controlling AF with drop in heart rate under 100 and blood pressure 120/80 control is great.
What meds are you on?
Usually a drop in weight means your meds can be studied regularly. Often our Drs monitor us and only refer you to Heart Specialist if it is a change in med required or reduced.
Patience and see how you go.
cherio JOY. 75. (NZ)
I’m on bisoprolol lowest dose and flecainide 100 twice a day
Hi
Bisoprolol should help hpertension and rapid heart beat but as a BB did not help my rapid heart rate of 156 Day 47 at night.
Private Heart Specialist added CCB Calcium Channel Blocker Diltiazem 180mg CD. I reduced the Bisoprolol from 10 down to 5mg taken at night. I monitored the additional med. In 2 hours my heart went from 156 to 51 - I was terrified. At a weekend I contacted Healthline Dr and she was helpful in saying reduce Bisoprolol further but the best advice was from the nurse who had worked under Mr Wong who said separate the CCB from the BB so AM and PM and reduce Bisoprolol down to 2.5mg PM. And she would contact Dr Wong and my clinic to reduce Diltiazem to 120mg CD.
I've been on this regime for 3 years next month.
And recently due to low BP I have reduced Bisoprolol to 1/2 2.5 white pill to 1.25mg.
I am feeling much better.
If your symptoms are not improving - you are on an anti-arrhymic med, you are questioning no improvement, it could be causing it so ring your Dr to reduce it or stop it.
In some people it will make no difference or worsen your rhythm.
I like that CCB Diltiazem for those without ventrice or vavlve problems who can have it - as also a safer anti-arrhymic med.
The balancing of meds is so important, But journey safely by checking with Dr or Specialist first.
A Heart Monitor and uptodate ECG are great tools to see what is hapening.
cheri JOY
Have you read the patients ' leaflets on the Atrial Fibrillation Association website, which should help you. AF can be very alarming and interfere with your life.There is no one tablet which will cure us of AF. There is no cure, but medication can help. Reducing weight also helps. Because there is no standard human body, we can react differently to the same medication. What each of us want is what works for us. In my case it was daily Flecainide. At least it worked for 13 years until I was found to be in persistent AF. That's now permanent but I can't feel it.
Because I am over 6'6" tall I never thought I was overweight. Nobody, whether medic or friend, even hinted I was overweight. A blood test showed I was in the pre-diabetes range, and so I volunteered to go on a course which was about healthy eating, and walking for exercise. No added sugar, but sweetness from fruit, in moderation, and beware of processed food. Walking for 30 minutes a day was recommended. That's difficult for me as I have foot drop of my right foot, which causes a problem with balance.
Losing weight helped me greatly.
Now that my AF is permanent, but without symptoms, I take only an anticoagulant, Warfarin being my choice.
I have had AF, for 30 years, off and on.
I hope you can find the right medication to reduce your bouts of AF..
I saw a cardiologist on Saturday for my AF.
Just a bit of background: I have paroxysmal AF and as I was already on Betablockers when it first happened (for high BP) they were just increased and I was put on Apixiban to prevent clots. I had echocardiogram as well as ECG. I have lost weight and my BP meds have been reduced to less than I was on for the high BP. I had a good long discussion with the cardiologist and he said that all the testing showed my heart is structurally sound and he told me that the Apixaban is controlling the stroke risk. He said that at 68, there are a number of things that could have triggered the AF, age, being post menopausal, diabetic, having thyroid disease, high BP etc. he basically said that because of the Apixaban I am at no more risk of stroke than anyone else of my age and with my health problems. This was very reassuring for me since 4 years ago I had cancer treatment which messed with my heart and reduced the ejection fraction to 47%. It was reassuring to hear that my heart is structurally sound.
He is going to refer me to an electro-physicist to see whether ablation is appropriate for me. He thinks they’ll probably say no because I am asymptomatic and only have intermittent episodes.
I was first alerted to this issue by my Apple Watch. I am grateful as without it I would not have been aware and would therefore not be on any treatment.
I feel like my trigger is excessive sudden heat and possibly dehydration.
You need to see an EP as ours is an electrical fault in the heart rather than structural etc. I saw one privately after the lowest dose of Bisoprolol proved too much for me to take daily after just three days! He didn’t think I had it as I have never been overweight but after I’d acquired a smart phone and Kardia at his suggestion and sent him a reading of my heart in AF, he sent a prescription for Flecainide to my surgery for me. At first I took it as a PiP but now I are it regularly, it has virtually put an end to episodes. Good luck with losing the weight and getting sorted.
Hi everyone,
You know, I’ve sat reading all your stories, comments, advice and tips. And do you know what, though I’ve had a couple of heavy periods of AF recently, which we all know, can make you feel a little down, the past half hour or so has left me feeling as if I’d been sat with some great, knowledgeable and caring buddies. Well done my AF friends, we are a great bunch of people! Keep on keeping on !
I had a pacemaker fitted almost a year ago. I do have some episodes but, in the main, I would recommend having the procedure done any day . Bye for now….. stay well.
Pingu,
Your case echoes my own a bit. Age 40 when paroxysmal AF started (infrequent at that time), but didn't worsen for another 3 to 4 years. Kept trying me on different meds, but mainly Flecainide, which was not preventing it getting more frequent and longer. I had the same thoughts - this does not seem to be working - and I said that to my cardiologist. His response was "I think it IS working" - and my reaction was of course 😨!!?!.
I sought the advice of another top cardiologist who certainly understood better. He got me on a trial of dofetilide, which didn't work either. These were the days of Usenet and I heard there about ablations and that the doctor in France who invented ablation for AF took overseas patients. My new cardiologist supported me in this and in 2002 at age 47 I went there and got my AF terminated. I was pretty much in permanent AF by then, so that outcome was quite a result back then.
The main lessons I learned were: seek second opinions if you don't feel you're getting anywhere, and if you're willing, seek an ablation soonest as paroxysmal is a lot easier to ablate than more developed forms. Finally, seek treatment from a well-experienced EP.
Also, your age suggests your AF might be "vagal" in form. Happens most on young fit people with no "heart disease", and has triggers associated with periods of low heart rate - at night, with (especially big) meals, in recovery after exercise or a naturally low heart rate perhaps as an athlete. Dr Sanjay Gupta (in York) has videos on youtube about this. I found I had a wheat intolerance which was probably making my vagal nerve go nuts, and knocking on to my heart. I found careful eating helped, but in the end didn't prevent me from needing an ablation.
Incidentally, beta blockers are contra-indicated in vagal AF as they can worsen it. I escaped BBs as I had asthma.
Cliff do you feel ablation is the best answer then? Similar to you I started early 40s paroxysmal, I have a low heart rate my episodes always at night and triggered my large meals late. As I get older I dread the A&E waiting times, cardioversion but I worry that ablation is damaging my otherwise healthy heart and I won’t be the same after fitness wise. Did you recover quite quickly after yours?
Hi Nancy,
My AF was so bad that even though there were larger risks than today (it was 2002), I just wanted an end to it. I had not long gone "permanent" and was willing to take risks for the chance of a better life. Drugs were not working and I refused Amiodarone. I did go to the best place in the world - Profs Haissaguerre & Jais in Bordeaux, and they did a great job, just needed a top-up after 2 months as for complex reasons my case couldn't be finished fully first go.
I recovered quite quickly, took me probably 3 to 4 weeks to get back to work (desk job) and another few weeks to get something like my old fitness back. Then I had 15 good years until my aortic dissection messed things up again. A third ablation 2 months ago to stop a new post-AD flutter, plus 200 mg/day Flecainide, has done the trick and I'm back feeling pretty normal again except for loss of strength and fitness (since my AD 7 years ago), which will come.
As a successful case, I'm probably biased, but if lifestyle and trigger management are not working, ditto drugs, then the only options left are ablation or surgical (Maze & its derivatives). It is still true, though, that ablation is easier and more successful the earlier it is done, particularly whilst still paraoxysmal.
I hope this is of some use, and best wishes to you.
The medicines given vary according to the specialist's preferences and the state of your heart during an episode. A rate control drug will keep your AF's top rate lower and, as a result, keep the heart output higher so you are less likely to feel ill; a rhythm control medicine like flecainide will try to stop the arrhythmia starting at all; a blood pressure medicine such as losartan will keep the ventricles safe in the longer term, even if you don't have a high BP.
I think there is a default mentality of giving rate control, such as a daily 1.25 / 2.5mg bisoprolol, but not without a good reason behind it, since a lower rate during AF will maintain the EF better than a higher rate, and reduced EF is what takes people to A&E. The downside is that when the heart is in NSR, the drug will induce some level of bradycardia and that might bring symptoms of its own, such as a "light-head", a distanced feeling and tiredness.
Steve
I find one of the anomalies of my afib episodes these days is that they start with a few ectopics then a period of very slow beats . This then changes to tachy as if the heart is trying to compensate which seems to make the afib kick off. Sometimes if I get up and walk about when the brady starts to raise my heart rate a bit it staves off the afib.
Mine is similar, really - but getting up can also set mine off. Sometimes that settles quickly but often not. It is a strange old thing!
Steve
Classic vagal pattern. I used to pop out to the stairwell at work and walk up a couple of flights to stave off an oncoming episode. I could occasionally terminate an episode with some gentle exerrcise, too
I am currently experimenting with not taking my Nebivolol. Although I only took .65mg when in NSR I suspect that even this small amount was affecting my rate. So far so good.
I totally get your frustration. I’ve had similar concerns with AF myself, and I know how hard it can be when the meds don’t seem to help much, especially when you're working on other things like weight loss. For me, the meds were more about reducing the risk of complications in the long run, even though they didn’t stop the episodes entirely. I also pushed for more follow-up and monitoring, since it’s a bit unsettling when no one seems to be paying much attention to the bigger picture. If your echo came back fine, that’s great, but if you’re still feeling worried, definitely bring it up with your GP—maybe even ask about seeing a different cardiologist for another opinion or more frequent checks.
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