I have had paroxysmal AF since 1995 and taking sotalol (beta blocker) led a fairly normal life until 2020, when I suffered an ischaemic stroke, blamed on AF.
Recently both my doctor and my cardiologist have told me I have permanent AF although there are long periods, such as this afternoon, when my pulse is a very regular firm 60 beats a minute and I have no sensation of any flutter or palpitations. I do take a lot of exercise from walking and gardening, but rarely have the sensation of fast heartbeat, except after certain foods or extreme fatigue.
The cardiologist's ECG was carried out for 2 or 3 minutes and the 'extract' showed just a few moments of AF trace, but this was after an hour's wait and an early start at the hospital when I was very nervous and stressed.
I know that AF can be 'symptom free', but if I have a steady slow pulse and can climb up steep slopes for a few minutes with nothing more than a little breathlessness, am I really in permanent AF and should I be risking my current stable condition by taking different beta blockers like Nebivolol or even considering an ablation? Nobody seems to be able to give clear advice on this here.
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oscarfox49
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Whether your afib is permanent or intermittent shouldn't affect treatment much. In any case you need to be on an anti coagulant to help prevent another stroke. The beta blocker helps keep your heart rate lower in either case. A successful cardioversion would increase the chance that an ablation would be helpful. Best, etheral
My understanding of the diagnosis of Permanent AF is a loose term where you and your doctors agree that your AF cannot be converted to NSR. Sounds like you are saying you have periods when you self convert?
It show at night my heart rate falls to 48 (throughout night average)
But it remains irregular throughout day and night.
So it describes the irregularity AF.
On Metroprolol I also had 2 pauses at night for 2 seconds.
On Bisoprolol none and when CCB Diltiazem was made my major meds also no pauses.
Control happened during the change in meds Metropolol 186 average (NZ always gives an average) Bisoprolol 156 average and Diltiazem 93 (now in control) with 2.5 Bisoprolol at night.
Bisoprolol as you know is a Beta Blocker and valuable in keeping AF in check.
But NZ they use Metroprolol as first line even when I said NO to it. After Stroke I was given 3 x 23.75mg Metroprolol. I was breathless, sweating from face madly and no energy on exertion.
I hope this explains Persistent.
cheri
You need to bear in mind that most of us here on this forum are not medically trained so, in my case, I can only offer suggestions based on my understanding of knowledge I have acquired from others, many of whom are trained medics and specialists in their field. Because AF can be so variable, obtaining an accurate diagnosis for AF can be extremely difficult. From what you are saying, it does not sound as if you have permanent AF particularly given your reference to the results from your ECG. As has been said, as far as symptoms are concerned, permanent is really no different to persistent AF in that AF remains with you 24/7. It’s only when any or all attempts to get you back into NSR have failed and both you and your medics have agreed that any further attempts would be pointless that your AF becomes permanent and subsequently managed medically, normally with drugs. However, regardless of what your Doctor or Consultant may have said so far, from what you are saying there are long periods where you are confidently sure that you are in sinus rhythm and as a result, you are not confident that your are in permanent AF.
It seems to me that the best way for you to establish whether or not you are in persistent/permanent AF is to consider getting a Kardia mobile monitor so that you can check your AF status anytime, anywhere and also produce reports that almost all Cardiologists/EP’s will accept. Only then will you be able to establish the best route forward for you. Most people find that the single lead Kardia works fine and I believe they cost around £100. Checking your pulse regularly is good but if you think NSR returns when you are relaxed and less anxious, the chances are AF will occur whenever you are in a hospital environment.
Hopefully, especially given you history, you are already taking an anticoagulant…..hope this helps
If you can push to it, if I were you, I would buy myself a Kardia ECG device or, if you have an Apple mobile phone, an Apple Watch. This will confirm the state of your heart at any time you choose to check. My friend has permanent AF and his arrhythmia registers whenever I test him using my watch; and yet, like you, he has no symptoms and a steady pulse in the normal range and he never feels palpitations.
Thanks. That's a very informative reply and I think it would be worth it to get a Kardia monitor just to see how frequently my AF occurs and what happens when I do relatively sustained activity (for someone of 75). This morning I am not so optimistic as my pulse is again all over the place, but this is probably down to the amount of beta blocker in my system in the morning as opposed to pm. But it's informative to know what is going on, and my cardiologist refused my request for a 24 hr Holter test as a 'waste of time'. I am of course on Apixaban as an anticoagulant which reduces my risk of another stroke, my major concern. Thanks for you advice.
That "waste of time" comment was a bit terse, but maybe not as unreasonable as it sounds given the pressure of work, and the lack of time and resources in the NHS at present (if you're in the UK, that is). My daughter-in-law is a nurse and she is often overworked and overstressed thanks to Covid and the need to mask up and the like. I wonder whether your doctor's attitude wasn't that the condition is what it is and needs to be managed as and when. My own GP is a great chap, but I don;t feel very satisfied whenever I discuss my heart issues with him.
After I started in 2019 with arrhythmias, I first bought an Apple Watch and I would recommend one as they are always with you and do so much else. A second-hand Series 4 would be ideal, but if you go that route, do ask about battery life. I later bought a Kardia as I thought it would pick up (or at least label) other arryhythmias - and it does. But it is less convenient and the watch always shows the accurate ECG trace even if it doesn't label other arrhythmias as well as the Kardia.
No I am in France, and had waited five months for my appointment. I had to get to the hospital 45 minutes away for 9 am and then had to wait more than an hour to see anybody. When the cardiologist came he just said he 'hadn't time to answer' any questions I wanted to ask, wouldn't tell me anything about the new drug he wanted to prescribe, and criticised me for not speaking French easily (after aphasia from a stroke .. and I speak better French than any English person I know here!) as I could not grasp what he was saying in a very strong francophone accent from west Africa or somewhere. He was rude to me and treated me with grunted monosyllables and interjected with 'hurry up,. hurry up'. He was quite the rudest professional I have ever encountered and he left me with a BP of 175 over 101! It was very disappointing although I do accept that the Covid crisis and delayed treatments has put everybody in all health services under pressure, though there was no excuse for his behaviour towards me. I have heard since that he has treated other English patients similarly. I have to find someone else if I really need help.
Goodness me, what a bad way to be treated in this day and age. It's so difficult to know what to do when this kind of thing happens. I think the medical system has deteriorated of late and the relationship with doctors has, at times, become unacceptable. I don't know what redress you might have. I think a lot of people who can afford it are using the private healthcare systems as a result.
I think that if I were you, I would invest in a device of some kind. The Kardia is likely as good as anything, and the 6L version does report a few more arrhythmias than the Apple Watch - but either are genuinely useful things. I wouldn't be without my Apple Watch, for sure. The Kardia, for a small monthly fee, also allows you to send the trace into them for a report to be given on what it shows. I've never used this, sending the traces to my doctor instead, but it might be worthwhile.
You didn't give your age, but a friend of mine, likely very much older than you at now nearly 89, has had permanent AF for many years and copes well with life, saying to me that he's hardly ever aware of it. It's possible you have it like that, I suppose?. His pulse is normal and, given his age, he is surprisingly fit.
Thanks for the advice. I am coming up 76 so still a 'youngster' compared to your friend. I guess all the health services are under pressure and there are always individuals who have little idea of how to treat patients, even when things are normal. I have found here the bureaucracy and follow up paperwork is wonderfully complete and precise, and the stroke recovery programme well planned, except that when I showed the booklet to my doctor which he was supposed to use to coordinate all the various treatments and therapies, he just handed it back to me! In France patients have to coordinate all their own treatment of course. Still he has only just learnt how to use the computer!
Time is what we most need but time is unfortunately the commodity in very short supply at the present time, so it is no wonder that standards have slipped. I must say that the treatment I got for my stroke in July 2020, a while after the pandemic had started, was exceptionally good and there was nothing but the best of attention. French families know to 'shop around' for the best consultants and their own doctors often say, 'Go there rather than to this person here' however unprofessional that might be.
Very kind of you. I never worried about AF until the stroke happened entirely out of the blue when I was gardening and walking three times a day! Nobody had ever suggested to me either in the UK or in France in the 25 years I had AF that I needed anything more than aspirin as an anticoagulant, though my new French GP said (after the stroke) that he was amazed nobody had prescribed apixaban or something similar before.
I hope all AF sufferers here are on effective anti coagulants as that must be the most important thing of all of all the medications we take.
Yes, not sure if that is surprising. I do not know what the general situation is in the UK now as I do not live there. A few years ago one of my sisters who was admitted to hospital for a gall bladder operation, was sent home with a packet of Aspirin because they said they could not get her HR down and therefore could not operate.(she had Afib) Needless to say, she had a stroke whilst preparing dinner one evening. She never had her operation as she died of cancer of the biliary duct. According to a specialist in this type of cancer, this was caused by a gall stone breaking free from the bladder. On a happier note, my Afib is familial and my other three sisters in the UK and myself in South Africa are all on Xarelto among assorted other meds !
Sorry to hear your tragic story about what happened to one of your sisters. I am in France now but was surprised that my GP in France never once recommended a proper anticoagulant during 15 years of visiting him for represcriptions for Sotalol and aspirin (Kardesic). I remember with a smile now of the times when he took my pulse and said 'You are in arrhythmia, but don't worry. That's nothing to worry about' and about a month later I had my stroke!
All we can say in the end is 'Ce qui sera sera'... and pass over it. All humans are fallible and doctors are no different.
I was interested in your comments that AF can be familial as I was diagnosed with a heart murmur as a child, and my sister recently told me she has a heart irregularity too. Yet neither my father or mother suffered and lived to very good old ages. Perhaps we will too. While there is a life there is hope! Have a good day!
Just to quickly add - my eldest sister is 90 and to see her you would think she was 20 years younger - as my Cardio said with Afib 'you die with it not from it' !
Ditch him! I live in France too. I was referred to a cardiologist by my GP 11 years ago and usually go to his consulting rooms for my appointments though my husband has seen him at the local hospital where he is based for a stress test. I can just ring his secretary now if I want an appointment and have never had to wait more than 6 weeks . Tell your GP that you were very unhappy with the way he treated you and you want to be referred to somebody else. Do you live in a " desert medical"? I have to say that the only time I have been treated rudely by a doctor was by a Magrebin anaesthetist. He said he could not understand my accent. I speak fluent French and have been asked on umpteen occasions which part of France I hail from as my interlocutor did not recognise my accent. When I tell them I'm English they are very surprised. Especially as I have a German surname - people often assume I am from Alsace.
I am in a dilemma as my own local doctor seems to be unsympathetic, sees me as someone suffering mostly with anxiety and depression (which WAS true but isn't any more... and is very common after stroke), and refused to refer me to a cardiologist, even though the neurologists in the hospital say I must regularly attend one. My doctor's reply to this was 'You are in permanent arrhythmia and it is reasonably controlled with sotalol, seeing the cardiologist again will be a waste of time.' I have my regular appointment in May with the post stroke consultants at the neurology department so I will ask them then, what I should do to sort out this contradictory advice, and possibly they can recommend a cardiologist to me in the 'big city'.
In the rural area where we are located there isn't really any choice. A much loved and appreciated local doctor died just recently and one of our locals has had to take on an enormous new number of patients from his list.
Oscarfox49, oh I didn't realise you were in France too.I have been extremely satisfied with the health service in France, it has been brilliant, that is up to my last rdv with the cardiologist. He seemed in complète disarray and just wanted to get rid of me. There was supposed to be a follow up phone call but this never happened.
I have taken your advice and have asked for a rdv with Prof Haissaguerre in Bordeaux, it has to be done by email.
HiMy understanding that first your heart is irregular.
Then it is persistent on exertion.
If your AF irreguarity is not present on exertion on a regular basis you are not 'persistent'.
I have rapid irregular heart AF on exertion but it AF is still there when my heart beats within normality.
Even in control at 93 at rest day and 48 at night averages (as NZ give rate on average) I have irregularity. I am on PRADAXA it is reversible. Twice a day 110mg PRADAXA. But never take double dose. You are in trouble if you do.
Hi Oscar,I am in permanent AF and have been for years, my ECG results show quite clearly I have AF (which I think is the lack of a p-wave - its been a while since I looked at the definition). Moreover my rhythm varies from the cha-cha-cha to the waltz, but it does vary all the time.
In exercise terms I am fine, asymptomatic (you need to listen to my pulse/heartbeat/do an ECG to detect it. I do Parkrun and that is fine. I believe that those who have paroxysmal AF probably suffer more trauma than those of us who are permanent, but have never knowingly had paroxysmal as I was diagnosed with permanent AF.
My comment was a complaint about the reluctance/refusal of the cardiologist to even discuss the various pros and cons of the possible options with me, after five months of waiting for an appointment. I mentioned the arriving early and waiting, and then being very stressed with his approach, because this made me more likely to be in AF and in a state of enormous stress. Taking buses and changing is not an option for me as I find it difficult enough to get to the supermarket or doctors at the nearest town due to intense anxiety and panic attacks since the stroke, for which I am on both fluoxetine and benzo diazepam tranqs. Whatever excuse my cardiologist had for his amazingly rude and abrupt behaviour I do not know, but it was the worst I have ever been treated by any professional in either the UK or France, the latter where up to now I have found treatment excellent, friendly and supportive.
If you are denied all chance of discussing your treatments and the doctor won't even tell you what kind of drug he is changing your prescription for, what is the point?
Thank you for explaining your question. All I know about Nebivolol is that it is aimed towards people with Cardiac problems. I have deleted my comments as you considered them irrelevant.
I welcome comments from anyone and thank you for yours. I am sorry if you think I regarded them as irrelevant, and I'm sorry if I wasn't able to reply to them. As you have removed them I can't recall what they were but never mind. Thanks anyway.
I think any of us here would feel exactly the same, I can’t imagine how difficult that must be for you.
PPiman has given you good suggestions and unfortunately, sometimes we need to take charge of our own health and push the doctors, politely but firmly, pushing studies and papers in front of them indicating that this is now best practice.
Hope you get somewhere with all of this, it’s really hard to cope with no support.
Definitely get a one lead Kardia device ($70 in the states)-after many ekg's and multiple Holters, it was the one piece of firm evidence to diagnose my PAfib. ABSOLUTELY worth the money. I also have a Fitbit Sense watch (pretty much a waste of money), and the Kardia gives a much superior trace than it.
Fitbit Sense is useful for monitoring heart rate-with one major exception in my case: When I wear it on my dominant right side, I found my HR frequently 140 or above, with no apparent symptoms! As it turns out-I am a nervous "fidgeter". My right hand is always active, drumming the desk top, rubbing my chin, etc. That would freak the watch out! Freak me out too! Wearing it on the left wrist solves that issue, and gives me accurate and dependable HR readings.
Also we both have experienced a stroke due to AF and a single little blood clot!
I too have permanent AF but underlying all that was thyroid cancer.
Mine is rapid, persistent AF.
As one of my ribcages stick out my heart skipped across more to left.
The symptoms I had was on exertion dripping sweat from face.
I would personally stay on the meds and taking a anti co-agulant which is important to prevent any more strokes.
When you are completely free of AF with consent drop off meds.
Ablation I was told too late if you have had AF for more than a year. Another said that's untrue.
A friend who had AF occassionally had an ablation after 7 years and they found 2 abnormal electric responses. No AF since a couple of papitations earlier on.
He says he is free now.
Professionals point out that when they get in there they can assess what is happening. But the trouble is if you dont have a AF experience when they hav the equipment in they cant assess.
Sorry to hear of your thyroid problem and I know that thyroid activity is linked to AF. I hope you are making a good recovery despite no ablation, I am currently reluctant to risk an ablation and they say if you have permanent AF for a time, then ablation might be 50% successful or less, despite the risks. I am very interested in what you say about doctors being able to assess the problem when they carry out this surgery as I thought they were more or less just burning out the receptors which are likely to cause the AF. One of the views I have read is that although this might end your AF symptoms, if you have AF for the reason of atrial myopathy in the first place, it doesn't mean it makes you any healthier or less likely to have further strokes, There are so many views on this that it is very confusing. I guess I am just looking for a 'miracle drug' that doesn't actually exist.
Yes had a thyroidectomy and 12 lymphs taken 4 months after stroke. My triage doctors including anaesthetists and surgeons argued that I should wait 6 mths after stroke. Not so said my surgeon and anaesthetist. I was operated on Feb 2020. The cancer was found doing a carotids scan! Lucky.
They won.
I wasn't in control of my AF being on Metroprolol. Down to 1 x 23.75mg.
That all over I was concentrating on controlling my AF so asked for Heart Specialist. Everyone thought that my heart would convert back once cancer removed but 2 lymph nodes had cancer in Papillary. Very slow moving.
I did have a raised top figure of my BP. But Losartan caused protein in my urine so I stopped taking it within 2 months in June 2019. Stroke in Sept 2019.
I found changing to Bisoprolol and then under private HS who put me on Diltiazem CCB, my hb dropped 50 to 51 too low so my Diltiazem reduced from 150mg to 120mg to take early morning and 2.5mg Bisoprolol night.
Balanced with day hb 93 at rest. Stil with AF and 48hb at night asleep.
I have gained energy from less PRADAXA. A mistake was made when I was discharged Northland DHB to Kaitaia DHB over weekend to free up Stroke Bed (only 3_)
I fight for me 'managing my own health' and you have to!
No longer breathless - Metroprolol.
2 years 2 scan checks NO CANCER. An empty place.
Just 2 March had a TVT Surical Mesh johnson johnson horrid product this was removed. All went well.cheri. JOY
So glad for you that things are going so relatively well now. I think you are absolutely right that we have to 'manage our own health' as experts tend to be very narrowly focused and general doctors know too little. My own GP even said to me, 'You seem to be getting better from your own efforts' which I took as a compliment from someone who just wanted to fill me with anti depressants and tranquillisers! We are so lucky here living in the countryside in rural tranquillity and this has helped me to get out walking and try to stay busy, no matter how uncomfortable it can be sometimes, but every day the sun shines I have found myself improving.
Good luck to you and thanks for responding to my comment too.
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