Taunton referred me to Bristol but they were unwilling because I also have hypertrophic cardiomyopathy and they didn’t have a good success rate for people like me.☹️ I was then referred to St Barts and they have said they’ll give it a go.
My question is though, I get ‘fast AFib’ so, is there a slow version?
When I’m in AFib I am really breathless even going up the stairs, I feel a bit dizzy and my heart rate is between 150-180.
I’ve read on here how some people can still cycle for miles, climb hills, or do other forms of exercise!
I also know of four people in my circle of friends and relatives who aren’t even sure when they’re in or out of AFib, which to me is completely unimaginable because I know the second mine starts.
I know we’re all different, but how on earth can this be?
PS I’m also anxious because my quality of live is so poor in AFib… if the ablation fails what is there left for me to do?
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Slidingdoors99
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Whilst usually considered a fast rate arrhythmia, it is not the rate that matters but what the atrium is doing and how many of the impulses actually pass from atrium to ventricle. Many people have rates which are "normal" ie between 60 and 100 and are quite asymptomatic. These are either very lucky or very unlucky depending on whether or not they have an AF related stroke before they find out that they have AF. If properly anticoagulated. asymptomatic AF patients are considered the lucky ones as they can get on with life.
As Bob says its the ' messing about' in the atria that is the thing ,not the rate necessarily.I had slow AF,which made me feel rough! Not often over 110bpm
Flutter was different ,always felt I was on my way out.
I dont think Barts would have a go if they didnt think there was a good chance of success,with NHS resources as they are.
Also,I wonder if the mini maze might be appropriate if not?
Thanks! My letter says that I have a 50/50 chance of it working. I’m so pleased that they’re prepared to have a try. It gives me faith that maybe I can go a few more years without AFib!
I hope it works for you. I was diagnosed with Paroxysmal afib in September 2019. I saw a cardiologist in February 2020. He said that if my palpitations became more pronounced I would be suitable for an ablation. I have hardly any symptoms. He gave me 50g flecainide as a pill in the pocket. Since then I have needed to use only a few of the original 60. I was talking to a friend in 2019 and she said a friend had died having an ablation. That was 6 years ago. I'm now 78 and my palpitations are not more pronounced. Were you given odds for survival from an ablation?
Yes most certainly as Bob has explained. My husband has been in permanent AF for several years. His average rate this morning as shown on my Kardia device was Atrial Fibrillation 73bpm whereas mine was Sinus Rhyth 73 bpm! I discovered his AF by chance on my Kardia and so he is now anticoagulated , no symptoms.
Since any and all treatment is only ever for quality of life (QOL) rate control and anatcioagulation are the most important treatments. Provided these two issues are addressed there is no problem and many AF patients live long and normal lives.
As my EP said to me right at the start of my journey, "Three things to understand about AF. It won't kill you, it won't kill you and it won't kill you,"
Yes! I’m pretty sure that’s what happened to me. I was in AFib continually for 3 months then after my cardioversion only lasted for 3 days, I was in AFib again for another 4 months…
My AF came with dreadful symptoms. Impossible to go to work. Too weak sit up in bed and read a book, had to crawl up stairs, etc. after 2 Ablations it was manageable with Flecinide for 6 years2013-2019 No mention of enlarged Atria at that time. Increasing Flecinide didn’t help and the Electrophysiologist I had “was too busy” to see me. Time passed, I was in AF most of the time. The symptoms not quite as bad as prior to first two ablations. I found a new Electrophysiologist. He tried a newer anti arrhythmic drug immediately and 3rd ablation, but because of the dangerous location of one of the rogue currents he it wasn’t successful. I was miserable with no energy and shortness of breath so last March I opted for quality of life and had the AV Node ablated. I’m feeling very well now. Off of all AFib related meds including a beta blocker. After all of that there is now some enlargement of the Atria which I believe will continue over time. But I’m 78 and not wanting to waste any more days feeling miserable.
Along the way I learned that the doctors don’t tell you …..there is no cure for AF and it gets worse over time . They try to manage it. They also say it won’t kill you, and I guess, that, directly it won’t but over time if uncontrolled the Atria enlarge and that can lead to heart failure. I do better when I understand what I’m up against so wish I had known that sooner rather than later.
AF can be difficult and hard. No one wants it. My heart goes out to all who suffer with it.
Age 70, with AF since 55, very mild symptoms in the first years with AF. Now, absolutely no symptoms when in AF. Until 5 years ago, when switching to AF, my HR would go from 50 bpm (I had slow running heart from early age - because of the exercise) to about 80-90 bpm. Now, when switching to AF, or reverse, what happens smoothly, in a second, there is almost no change in HR. I have tried to explain how I understand it, in my post "Remodeling of the heart".
Why some people suffer significant HR increase when they switch to AF!? It is because, when the atria stop cooperating with the ventricles, blood flow-rate (output of the heart) drops suddenly, so the control center (in prolonged spine cord) gives the signal to compensate it via the increase of the HR. If the heart is "strong" and if it easily adapts to the new way of functioning, sufficient blood flow-rate can be achieved at say 80 bpm. If the heart is not so "elastic", than the necessary flow-rate can be achieved at say 160-180 bpm. There are people whose heart goes to 220-250 bpm, without reaching the necessary flow-rate (leaky valves, ...). They feel especially poorly when in AF.
My strong belief is that, with the time, the heart gets used to the new way of functioning, gets better efficiency, and the symptoms subside. Also, I believe that the number of people with asymptomatic AF is far above the number of diagnosed people. They have no symptoms, they function well or satisfactory, so never go to visit the doctor.
The ventricular rate usually counted as the heart rate may be partly dependent on demand but in AF it is more the result of how many of the signals are being transfered from atrium to ventricle. Since the atrium is not contracting in any sort of rhythm, there are multiple signals being fired off. If every one was received and acted upon by the ventricle then vetricular fibrillation would also happen which is often fatal. The signals are filtered out naturally with only a small percentage getting through resulting in a "heart rate" that could be anything. Probably far more patients have the more distresssing fast AF.
"Hart rate" remains the number of ventricle contractions per minute, no matter how chaotic electric signals and how irregular way of functioning of the heart... It sucks the blood with ventricles and pumps it out with ventricles. Such a good thing that it functions well, for decades.
As for the number of patients with and without symptoms, we can only guess. I follow the logic - if almost 100% of people, in elderly age, suffer poor vision, why would only the privileged ones have AF...? To be more precise - "Baby boomer's disease" and cardiac arrhythmia have the same cause - dysautonomia.
It’s been mentioned several times that my left atrium is very enlarged and then on top of that there’s the HCM so that explains a lot! 🥲 My poor heart!
No need to feel down, really! Just adjust the way you live. Here are a lot of people who want to exercise, even in permanent AF. The very idea is wrong. If we have a "normal" case of AF, with HR on the level of 160 bpm at rest, than, when exerted to load, the HR should rise in the course to enlarge the blood flow-rate, but there is only the span 160 - 220 bpm at disposal, what is not sufficient at all, and too high from the start! Imagine sound and young heart, with 65 bpm at rest and the span for the regulation 65-220 bpm. What a difference!
It is not a problem having the flat tire on the car, the problem is if you would like to drive it as if it was OK, lol.
Of course, I can not know the reason why you can not change the way you live, but it is in human nature to try to accept the loss, to adjust to the new circumstances and to go ahead. If you are overweight, what 67% of British are, first thing would be to loose the excess weight. It will solve 50% of your problems. This way, the demand put before the heart will be significantly less, leaving the heart capacity free for whatever you need it . And, please, try not to dream of exercise as long as you are frequently in AF.
Breathlessness is the sign of insufficient oxygen supply to your body, mostly because of low blood flowrate. For instance, many people, when in AF, have very "good" results for BP, say 115/70. Unfortunately, this can be the consequence of reduced blood flow-rate (reduced because of AF), leaving the tissues without enough nutrients and oxygen, whereby patient feels breathless.
Thank you! Or…. a person may become breathless because the pumping action of the heart isn’t working properly and so not supplying enough oxygen rich blood to all of the organs (including the lungs)
I’m not overweight… never have been, eat pretty well and just three years ago was teaching gymnastics! 🤔
Wow... That's maybe where the arrhythmia have come from - from gymnastics (read: body manipulation). I can not forget a sentence, someone has written in this forum years ago: "Isn't it funny, how many of us here are cyclists!?"The rest seem to be runners, rowers, horse riders, gym fans and similar. Are we incapable persons, who have tried to be inappropriately physically active...? Maybe... One is for sure - we were genetically predisposed and led the way of life which brought us where we are now. As said before, we can do nothing, but to accept it and to carry on as positive as possible. When I was a kid, I have noticed that in my family, there are very many men who were bald. Have not understood it then in the right way... The baldness is the clear sign of being prone to dysautonomia. My brother got bald at the age of 24 and had during his life all the possible problems dysautonomia brings with it. I was the rare one to have kept my hair until now, until 70. Maybe my genetics are more like the one of the neighbor, lol!
Note: Try never to be "glass half empty" person! Try to be "barrel half full" person, lol!
I just wanted to briefly say that, with respect - you don’t know me at all.
I have always been a glass half full person and just because I’m concerned about having AFib and HCM is doesn’t mean that I’m sad or depressed, I’m just anxious about it and what might be needed to be done in the future.
More than this, I am praying that my children and grandchildren haven’t inherited the faulty gene.
I was teaching Gym as part of my role as a Key Stage 1 and 2 teacher and not personally doing back flips around the place!
I’m glad that you’re so positive yourself and that keeping your hair gives you so much joy!
I hope, I haven't offended you... Everything I have said, I have said with the best of intention... It really is hard to comment in the right way, on the base of only a few facts people give about themselves. What I have noticed, is that people hesitate to give the data about themselves (I am among them, but I am hiding from administrators here, in the forum, lol). Many do not give the data about the country, the gender, especially the age. I partly understand it, but believe that the fear is unnecessary large. I would be able to give even the number of my bank account - it is almost always empty, lol! I live to laugh! My son is 40 of age, but is always making jokes and trying to entertain people around him. I sometimes get angry with him because of it, but maybe better so, than to be in depression and to cry all the time. Wishing you all the best on your arrhythmia journey!
I like your attitude. It really helped me with my thoughts on AF. My name says Herthel (my late husbands name) . I am a 73 yr old female diagnosed with AF in 2020. Have had ablation last Aug and feel so much better. I am glad I read your post. I have gained weight in the last 10 yrs and am now even more encouraged for a reason to lose it.
Hi! Thanks for the nice words! It is so rewarding if we are able to help someone, even a little bit!
It is so nice to hear that you are pleased with the results of your ablation. Here, in the forum, people mostly come to complain about poor results of an ablation.
Loosing weight is the best thing everyone can do for himself, at home, not running around to see the doctors and not paying for private consultations. But, I know that it is the most difficult thing to do. Personally, I have never been overweight, but have been experimenting with loosing some of the weight (when my pants get almost impossible to button, lol). If you are interested, I offer you a chat via PM, as not to bother the others with it.
Hi, first of all congratulations and best wishes! Regarding ‘what if it fails?’ I assume the suggestion might be ‘pace and ablate’ but not sure if the HC would make that unsuitable?
I think the icd would be the ‘pace’ part. I would think the procedure would give you an advantage as less chance of an adverse event on holiday or while driving. I gave up driving because of presyncope episodes and though they seem to have gone I don’t feel comfortable about starting back driving now.
I noticed you mentioned Taunton, is that the Somerset one? Do you live in Taunton? I was referred from Taunton to Harefield. My ablation didn’t work for long but my AF is now usually much slower so that would be an improvement if yours had that effect.
I thought I was the only one with symptoms like yours. It could have been me who had written it. I started with afib in 2016 with perhaps an episode every 3 months or so which lasted 2 or 3 hours at a time. There started my long struggle with cardiologists to explain how I was suffering. I was prescribed Apixaban and Bisoprolol 2.5 at first and told to come back in six months. Well, a lot can happen in six months. The episodes got more and more painful, I could hardly move. With my episodes I always had pulsing, squeezing and throbbing in the arteries in my throat and neck and my heart used to pound so much you could see my chest jumping up and down.
I used to explain this to the cardiologist but unfortunately I was never in afib when I had an appointment. Without catching an episode actually happening there was no ECG to show this. So the next time I had an episode I was told to phone 999 and get a record from the paramedics with their ECG, which I did. In fact they rushed me into A & E as they were so concerned with my readings.
So there started my long journey to get taken seriously. They kept upping my dose of Bisoprolol till I was taking 10mg. More scratching of heads that I wasn't improving, so then digoxin was added to my meds. I suffered that for 2 years but I was so dumbed down life became unbearable. Nothing made any difference, the episodes were getting closer and still very painful , so I asked to be taken off digoxin as it was doing no good.
In 2020 I was referred to an Electrophysiologist and he suggested an ablation. I had to have a cardiac MRI first so with the wait for that and then another wait for an ablation the pandemic was upon us. By now my episodes were every 2 weeks and lasting 36 to 40 hours at a time and still very painful, my quality of life was nil.
I had an attempted ablation in 2021. Apparently, my heart had thickened and they had to abandon it after 40 minutes. I was kept in the ward overnight which was lucky as I suffered a pseudoaneurism the next day. The leg where the procedure was performed had an accumulation of blood at the site of the catheter. It dissolved by itself and no injection was required. I spent 3 days in hospital because of this and had three different vascular consultants visiting me (they must have thought I was going to sue! ) Anyway to cut a very long story short I was prescribed Amiodarone which I had a very bad reaction to. I took it for 6 weeks. Never again!
Then a chance meeting of a cardiologist on one of my A & E visits (9 times in 6 years) I managed to get some progress. He took an interest in my case and told me I had Hypertrophic Cardiomyothopy. He went through all my medical records and wrote to me to suggest I should have a pacemaker. Another ablation would not work as my heart had thickened somewhat. So he implanted a CRT-P pacemaker 6 weeks later. I had a general anesthetic as he suspected it might be a bit 'tricky' as he put it. It was, it took three and a half hours. Then 8 weeks later I had an AV Node ablation to start the pacemaker working. And it is magic. I feel so energetic, no more dizziness or breathlessness.
I'm proof there is light at the end of the tunnel. I am completely dependent on the pacemaker though. I'm 73 now and these last 6 years are just a memory, it's wonderful to feel so well again. An ablation didn't work for me but does for so many other people, so I hope you will be one of them.
My goodness me! I can’t thank you enough for your post!
It was so interesting that I read it twice!
Like you, the side effects of Amiodarone were so bad that I was taken off after six weeks like you.
Beta blockers gave me chronic asthma so that’s a no go too.
St Barts have now suggested that I start a new pill called disopyramide. Have you heard of that one?
Your story had a happy ending and I’m clinging on to that this evening!
What a horrible nightmare you have been through. Luckily for me, except for my first AFib episode I haven’t had any chest pains. What you described sounds really frightening.
I hope you remain well.
By the way, when in AFib what was your heart rate?
If I have pace and ablate will it slow down I wonder? I’ve been told that although the AFib will still be happening,! I won’t be so aware of the awful symptoms?
Thank you for reading my 'saga' , no I've never heard of disopyramide.
When my afib episodes used to start it was like someone turned an ignition key and my heart used to pound away erratically and I could feel the blood rushing through my throat and neck to my jaw, it's a symptom I found difficult to explain to the medics. I don't think anyone who hasn't had a fast afib can understand.
There are so many variations of afib as I have discovered since being on this site.
I wish I'd found it years ago then I could have pushed for a diagnosis earlier.
Anyone with heart problems needs to be reading these posts and to realise they aren't the only ones suffering.
The time between having the pacemaker and receiving the AV Node ablation was about 6 or 7 weeks and during that time my afib became more frequent, but as soon as the AV Node was done, the next day I felt really well. My colour had come back, I felt as if the blood was reaching my extremities. Warm feet and hands!
Now I'm used to being paced I notice that I'm still having the episodes but without the discomfort. It's a feeling of something is happening but it is of no importance. I just ignore it. My cardiologist did say that I'd still have afib but the pacemaker would take over completely. It's true, it does.
Incidentally, when I was in afib my heart rate was 170 to 200.
Thanks again and please keep in touch with me, if that’s possible?
Strangely on 5th January (the start of my last AFib bout) I could feel my heart pounding in the back of my throat and the dizziness was new!
Since that 4th cardioversion I do feel differently, I mean before after the cardioversions I felt really well and back to normal, but now, even going upstairs or eating a meal I’m aware of every beat and just so wish that I wasn’t!
All those years of being blissfully aware of those heart beats!!
Do you have children and if so, are they being tested for HCM?
Mine are being screened and I’m so anxious about that.
Hello again, I didn't realise you have had cardioversions, you must have been through a lot too. I looked up disopyramide and it's an antiarrythmic sodium channel blocker.
I forgot to say that after taking Amiodarone and finding it unsuitable for me they took me off Bisoprolol and put me on Diltiazem which didn't help at all but I had no side effects with it and am still taking it. Whether I'll still need to take it now my pacemaker is working I shall find out when I get my next cardiology appointment .
My family history is a bit short on information. I can only think it might be my father who unfortunately died of cancer aged 40, so the HCM would not have appeared.
I am an only child and I have 2 sons. The eldest, 52 is very fit and he doesn't say whether he'll get tested. My youngest son is 50 and will be tested. He already gets strange fast heartbeats and takes after me in many ways and could be a future sufferer.
Yes, keep in touch, I'll be interested in your future treatment.
I live in Stoke on Trent by the way, my hospital is the Royal Stoke only 5 miles from me!
I’m new to AF as all kicked off in Oct after being in hospital with flu. I’m 55, non smoker, healthy etc …. I too have the symptoms you describe with runs of fast AF daily at 150-180, 10 mins up to a few hours, I can’t bear it. I now have invested in a Kardia as the wait for a48 hr tape is do long & it was all evident on my ecgs in CCU.
I still find it amazing that people are in permanent AF & no symptoms. My recordings with lots of evidence of fast AF & other bits & bobs have gone to my Gp & cardiologist. I too have an enlarged left atrium & leaky valves. Had a CT heart scan on Sunday , hoping to get result soon & get sorted to resolve my very symptomatic daily runs of AF. I’m now back at work & really struggling with getting very tired.
All the best with your treatment, keep in touch and let us know how you get on.
I’m on diltiazem at the moment…. Possibly having flecanide added in if CT allows it .
My usual rate in afib is 130ish resting and 160ish after moving around checked on my kardia. I feel it when it kicks off, it bangs really hard and is uncomfortable, I only really feel it in my chest. If I as stuck in it for a good few hours or so the symptoms calm a bit and I will have to check it is still there if resting, I soon know if I try and move around though.
It makes me gasp for breath sat down and “puff” my breath a bit on breathing out. When it reverts I’ll notice my chest has calmed and I’ve stopped doing the puffing and panting.
A lot of shorter episodes now and if it doesn’t stop by itself one extra 50mg flecainade will normally stop it after a while.
My last episode though a couple of nights ago I felt the pounding and checked my kardia and my rate was late eighties, I’ve not had this before, it was every bit as uncomfortable and breathless as usual though unfortunately. At least it only lasted around an hour.
I saw the cardiologist 6th Jan, had seen him last year regarding valve problems and hadn’t had afib for while last time I saw him. He has booked me in for a 72 hour monitor as he wants to know if I have any episodes I’m unaware of and how low my heart rate goes, will be interested to see what it picks up.
I checked through the Kardia readings I took when I had the slower episode and there were a lot of normal looking beats in among the afib which probably slowed it down a lot.
It usually shows this as normal with ectopics, but in this case there were more afib beats then there were normal ones.
Glad you are getting your monitor done quickly, I think I might have a bit of a wait for mine. Would be interested to hear what yours comes up with.
It’s all AF, fast, medium or slow. These are not different kinds of AF but just adjectives which are occasionally applied. “Slow AF” so far as I know is less common than that with a fast rate.
I have read that AF often eases when it becomes permanent. My elderly friend is now 89 and has had full time AF for many years, but with a normal rate. My son's colleague, still teaching at 76 has had his return with flutter, and he's fine, too.
Hi there. I also have HCM and my EP thought it unlikely that an ablation would be successful and if it was, not for long., how ever he was prepared to give it a go at St. Barts, if that's the way I wanted to go. I decided against it.I had a pacemaker fitted at the end of September and the AV node ablate beginning of December. It was set at 80bpm to allow things to settle, then adjusted down to 60bpm, which I found for me, to be too slow so it's been set at 70bpm. I had forgotten how it felt to have a steady heartbeat, its like bliss. I know that it's a big decision but for me, definitely the right one and I feel like I've got my life back again.
As far as the HCM goes, I had gene testing done at St Thomas and they couldnt identify a gene. All of my children were tested and found negative and neither parent appear to have had it. Interesting enough, I was a competitive swimmer and there is some thought that athletes may have developed this rather than genetically inheriting it?.
I hope that you get a satisfactory outcome and one that makes the AF easier to live with.
Hi, I see you’re from Taunton? Me too and I was referred to Bristol. They decided against an ablation, too many ectopics coming from too many areas……. I’ve got a telephone appointment with them as a follow up later in the week. Do let me know how you get on at Barts
I will! Perhaps Bristol don’t want to tackle anything too tricky?!
It was mentioned more than once to me that he (the EP) was far more used to treating people with short AFib episodes and not people like me who never self convert!
The MRI showing that I also have HCM (inherited) was the final reason for being refused at Bristol.
After two years I still have to see a cardiologist at Musgrove 😳 I’ve spoken to two different ones on the phone but then referred to Bristol. Had echocardiogram etc. done at Musgrove. Be interested to know who you saw at Bristol.
Who have you spoken to at Musgrove? I have seen several cardiologists over 20+ years, always get discharged then if things go pear shaped I am referred to someone else! At this rate we could form a local group. I know two people locally with AF but neither of them are the slightest bit interested in any discussion……
Hi Buffy, are you from the same area? The two doctors I’ve spoken to from Musgrove we’re both locus and didn’t seem to be there very long. Love to meet up with you and Slidingdoors99 for a coffee!
Hi – your post caught my eye as until relatively recently I had no idea that there was such a thing as ‘slow AFib’ either! As a brief(ish) summary of my background/situation for context; I was originally diagnosed with AF in 2005 after a couple of very fast and symptomatic AF episodes, the first self-reverted and the second (which was caught on ECG for the diagnosis) was cardioverted through intravenous Flecanide. After a false start with Sotalol (which as a keen hill walker and cyclist I detested) I ended up with Flecanide as PIP until 2012 when after another fast episode (which reverted with 300mg of Flecanide) the Cardiologist suggested I took a low dose of Flecanide twice daily which was the case until 2022, during which period I had no AF as far as I am aware (so relatively fortunate). In April last year I had a fairly mild heart attack (NSTEMI) completely out of the blue (no Angina before) which resulted in stents, but unfortunately a week later I went into AF (initially faster than my normal HR but settled fairly quickly into slow AF) it subsequently became persistent. After much deliberation (because my symptoms were manageable with medication) – including research and reading posts on this forum which has some very knowledgeable and helpful people as you will have gathered - and seeing three EPs (including Professor Hunter privately who I believe works out of St Barts) I decided to have an ablation (using the ‘new’ pulsed field technique) which was done at Liverpool Heart and Chest Hospital in September. So far it has been a success.
I see that your situation is more complicated than mine and I would stress that the only medical knowledge that I have gained is from reading around for my own particular situation (I don’t even have a Biology O level!).
So, as you have already had many good replies to your primary question, the main reason for replying to your post, relates to exercise. I have seen in this thread and previous posts, opinions (at times negative) about exercising, both in terms of being a factor in developing the condition in the first place and also about exercising in AF. My starting point is that exercise is in an important part of my quality of life, for both my physical and mental health (from reading your post it may well be for you as well). So, if I was told by professionally qualified medical specialists that I should not exercise I would be devastated. Fortunately, this has not and has never been the case (via three leading EPs as well as a general Cardiologist). Rather I have been told to exercise with care, even when I was in early persistent AF. As I said with your situation being more complicated than just AF you should of course be guided by the Professionals for your own particular circumstances.
Yes, there is significant evidence that for very high intensity, lifelong endurance athletes, too much exercise has been a factor in them developing AF. I have recently read ‘The Haywire Heart’ by John Mandrola and others and I have also read ‘The AFIB Cure by John D Day and others. Both of these books stress that although too much exercise can be a significant factor there are many other factors at play.
Anyway, enough said, I do hope you are well looked after, and I wish you well with returning to a good quality of life.
Thank you. I read your post with interest. Yes! Being fit and active has always been my way and up until September 2020 I was tearing around the playground with a class of six year olds!
My P-AF is progressing , I now have it for up to 5 days at a time which is really debilitating because I am so symptomatic (breathless/hot sweats/headache/feeling ill ).
To begin with when first diagnosed and episodes lasted a few hours, my heart rate used to remain the same throughout the episode usually between 135-145bpm on my Kardia.
These days the bpm fluctuate during the long episodes and can be as low as 70 bpm and up to 148bpm so I would say yes you can have slow AF . When I am not in P-AF my heart rate is low in the 40s 50bpms.
I have had 6 years of managing my progressing P-AF , I like to think the lifestyle changes I made when diagnosed have slowed down the progression but it has caught up with me and I am now on a 9 month waiting list for an ablation . Meanwhile I have been advised to try Flecainide again which I tried for 3 months and it didn't help at all, it increased the symptoms but needs must and I am giving it a try .
As no one has yet pointed out that there is a, supposedly small, minority of AF sufferers with 'lone' or 'idiopathic' (Ancient Greek for 'search me!') AF, I thought I should give a shout out for us.
Of course, as a form of AF which is not caused by something obviously wrong with the heart or any of the other 'usual suspects' (thyroid dysfunction or diabetes principally) it is a diagnosis of exclusion. And, naturally, medical dogma differs on this. Some, not unreasonably, maintain it must be caused by something, we just have not spotted it yet! So, there is a movement to get rid of LAF as a diagnosis. Although, as some others have said here, there are probably a great many undiagnosed and unsuspecting 'LAFfers' out there.
I used to put my hands on those heart rate monitors thoughtfully built into old gym running machines, and not infrequently find my rate was 220+ (my 'normal' resting rate was and remains about 38-40bpm). And, I would just think: "The machine's wrong, or how fit am I? That's the rate you're s'posed to deduct your age from to figure out your VO2 Max!" Other erstwhile and current keen exercisers here will know what I'm saying.
That was several years before I was, wholly inadvertently, diagnosed as being stuck in permanent AF (before they got around to trying a cardioversion). Even almost collapsing on a running-machine once hadn't wised me up. I had had an ECG years earlier (because a doc at a medical thought they had spotted something presumably), but it was all OK, and I was told I had 'the perfect heart' (which in retrospect was false comfort). So, why worry?
When I was first diagnosed I just felt a bit off, out of sorts. Although I was in permanent AF I could often make a good fist of 5km or 8km runs. Best not think about my heartrate! It's not unusual for my rate in AF just walking up a modest hill to be 220bpm (I used to like walking up to the Peak in HK in the early hours to combat jet-lag). So, I was astonished (and disappointed!) when a stress-test under Prof Edward Rowland was summarily stopped, when it had barely started, just because my rate exceeded 200bpm and they apparently feared I would peg out on them from heart failure.
Mine has since been a predominantly vagal, lone, paroxysmal AF (lots of 'flavours' there!). And I have not infrequently found that exercise and a dose of flecainide (and soda bic) has helped set me back to NSR rights. It's the beta-blockers I have been prescribed (because the dogma was you can control either rhythm or rate, 'it makes no difference' - to death that is, not QoL) that really make me feel ill. And I have largely dispensed with them. With a normal resting rate below 40bpm you don't want BBs, trust me! And I half suspect my normal sinus bradycardia is an intimation of latent hypothyroidism. Particularly poor fT3 conversion - the sort routinely misdiagnosed and mistreated in the UK (not least because T3 is dear for the NHS).
How we fare in AF is going to be about all those things that affect VO2 Max (see e.g. runnersblueprint.com/vo2-max/) together with the ejection fraction we manage in AF. The exercise risk in AF is heart-failure, and that overdoing it contributes to left atrial enlargement and thickening of its walls, which can contribute to the 'substrate' that sustains AF - the vicious circle, whereby 'AF begets AF' (and, hopefully, vice versa for NSR). It's a chicken-and-egg and load thing. Nothing against 'healthy' exercise per se.
There is also such a thing as 'athlete's heart' that doctors recognise as predisposing to AF. But they are thinking Olympic athletes, and have been reticent to acknowledge that we mid and late-life devotees of perfunctory, strenuous exercise may also have brought AF on ourselves. As I probably did in my late thirties on treadmills, and not sticking to swimming.
Part of the trouble is that AF is a very protean and heterogeneous complaint. And some of the things that are known contributors to it are not very well handled (especially in the UK).
Take that thyroid problem I have alluded to already, for instance. Even Endocrinologists often have a very cursory take on the importance of e.g. T4 to T3 conversion, let alone B12, folate, vitamin D, testosterone metabolism etc.. Along with a high threshold of significance. Before 'treating the test' became the norm, elevated cholesterol alone would be deemed an indicator of hypothyroidism. Now it is more likely just to elicit a Pavlovian statin scrip.
Chronic stress and adrenal dysfunction are often 'upstream' of thyroid issues. And some beta-blockers, and e.g. the very toxic form of iodine in the last-ditch AF drug Amiodarone, have an adverse impact on Adrenal-thyroid function. As I say, it is not well-diagnosed, it is all connected, and all to easy to bring on adverse metabolic feedback loops - exactly the sort of 'Escher stairwell' that AF itself is, after all.
So, in answer to the question: what can you do apart from ablation? The answer is quite a lot. But the difficulty is getting much useful guidance from physicians. In the absence of whom there are all too many charletans peddling snake-oil. And it is a challenge knowing which things that apocryphally worked for others may also work for your AF.
My own intuition when I was first diagnosed with AF was that I simply 'shouldn't have' it. And that it must be due to a metabolic/endocrine problem. But unless you have a goitre the size of a tyre you will get short shrift from an Endo (as I did at Barts), and be plugged into your local, friendly ablation-man. Unfortunately, the people most familiar with (especially lone) AF do ablations. And 'to a child with a hammer...'.
Don't get me wrong, we have to do what we can do. I have had an ablation myself (a decade ago) and may have to cry 'uncle' and have another before my AF becomes too persistent and refractory to it. But ablation is like having a house-fire and dealing with it by simply knocking off the alarm. In due course we shall learn more from genetics and the complex biochemistry that most medics are just not versed in presently. Which will shine a light on the true substrate(s) sustaining degenerative AF.
I was listening to Jim Al-Kalili interview Prof Dame Pam Shaw today (bbc.co.uk/sounds/play/m001h..., in which strenuous exercise was cited as precursor to some motor neurone disease (MND) - what Prof Stephen Hawking had. And the latest 'miracle' treatment for other MND cases involves a drug that blocks an adverse gene affecting superoxide dismutase (SOD1), which balances zinc-copper in mitochondria and scavenges free-radicals .
This rang a bell as the role of SOD was emphasised to me by a GP specialising in chronic fatigue issues (arising from dysfunctional mitochondria - bits of ancient bacteria co-opted in animal cells to power them). So, a refractory 'AF substrate' may just arise from parallel RoS insult, dysautonomia, and neurological/myocyte dysfunction.
You certainly have an interesting back story and a wealth of knowledge on the subject.
There’s too much in your post for me to unpack here and now, but just to say that I do get it, especially the Escher staircase and I too understand (having taken it for six weeks) the effects of Amiodarone (it gave me the beginnings of a thyroid problem and extended QT intervals)
Thank you again and good luck on your particular health journey.
I know exactly how you feel, this is just how afib affects me and it often goes on for up to 36 hours. My mother on the other hand has afib and doesn't even know it! She is medicated with apixaban at a low dose because she is 94. I have to take the antiarrhythmic sotalol and apixaban. I get terrified when I go into afib the anxiety is overwhelming
Slidingdooes99......noooooooo, how did you cope with that? I am wiped out after 30 hours and I can't sleep with it, makes me feel dreadful and very anxious
I know! It was so horrible! I had to rest after taking 10 steps or so and I slept every third day, all night all day and then again all the next night!
It seems to me that AFib can be so different for different people!
Couldn't agree more! I live in constant fear, thinking I mustn't do that, shouldn't eat that, don't get stressed, don't lie on the left side and much more. Controls me sometimes 🥺
Well, I must say that I want and feel the need to express my gratitude for your original post Slidingdoor99. We encounter so many different areas of AFIB causes and fixes here on the forum. Until I read about your case I had no knowledge of HCM and the trappings that go with it. What I read is that it may be a trigger in itself causing the AFIB your experiencing.
Excercis e Pro and Con is another stick area along with thickening of heart chamber walls.
My experence with Pace and Ablate started On 9/11/2019 when my GP sent to emergency room as a 75 yrs. Male HR 173.5 BPM. Who can forget the .5? The doc verified AFIB and asked about symptoms??? Well, Doc I have been short of breath for two weeks and unable to work or walk to the mailbox with runnning short of breath. " No! I am not going to be admitted
Against his Medical Advice, I left and drove home to explain to my wife where I had been for the last four hours. Saw a Cardiologist and was advise to NOT consider ablation, but rely on medication.
I did so for 20 months and then I was cardio converted which failed following two attempts which produced NSR last roughly 4-15 seconds give or take the opinion of the other people in the room.
Finally, referred to EP. He decided since I was "permanent" time FOR ICD with defibrillator.
Simple procedure you come in we run 3 wire/leads into your heart and connect ICD place just under the skin near the collar bone and send to recovery you go home same day.
What could be easier? Nurses helped me get into a wheelchair and told me my wife was waiting downstairs motor running. ALL GOOD??? NO! I hit the wheel and bounced 2 inches high as the ICD fired it's first charge. Felt like a "Horse Shoe" crab was pinching my heart tissue from deep in my chest. Hummm, That hurt. the nurses are confused and I can understand that, while asking them for the "BLUE magnet!" NOW! the ICD was determined to save my life! So it fired again, yes the battery charges the capacitor in about 15-20 seconds
I yelled, it just went off again where is the Blue Magnet??? Nurse one is trying to reach the EP, Dr. Solvarie, who left two hours ago to drive to another hospital to perform an ablation procedure. Go to the emergency room and get a Blue Magnet AHHHhhhh, ohit just fired again that's three times getting shocked by what my primary cardiologist Dr. Rothchild later described casually as, "DC current which is not fatal even though it is 62000 volts. "
Finally, the Nurse, Lisa was running to my rescue blue magnet in hand and placed it over my new implant. Presto, I relaxed fell back in place as nurse Lisa Taped the magnet in place.
I knew I was going home to die. In came Dr. Evans, Hi I'm the hospital Cardiologist and I heard about the problem, but I want to assure you that the ICD didn't really malfunction. What it shocked me six times, which was a lie. It was determined later that it only fire five times.
It was also determined that my HR had reached 180 BMP and the atirum vibratting so fast that the ventricle lead thought this guy is having a heart attack, fire when ready.
The doctor explained that he could adjust my medications IV and wanted to keep me overnight. In my distress and ignorance I said "just send me home, I am going to die"
Dr. Evans, jumped up out of his chair and firmly said so the whole room and down the halls could hear, "YOU ARE NOT GOING TO DIE!" to which I with tired body and voice whispered
"you can't help me, just send me home." Dr. Evans wheeled me to his priate office and begged me to give him 24 hours to prove me wrong, He was very likeable and it brings tears to my eyes just reliving this now, as I replied, "I am going to cave and give in to you."
Next, I am moved to a private room hookd- up to what will be my watch dog electronic equipped state of the art display for the next twenty four hours. The next morning the doctor explained that he had watched me all night and tracked my IV medication changes as my heart rate came dowm to 90 BPM. He wanted to wait until evening to make certain I was stable. I fell asleep and awoke to see a short man setting a piece of electronic wireless gear on top of the blue magnet(I knew about the blue magnet from a YouTube video).
This Tech, John had a laptop computer which wirelessly communicate with my ICD and he was able to customize the settings, so that my profile would protect me from unwanted shocks.
He eplained what changes he made as he removed the famous Blue Magnet.from my chest and handed it to me, Saying "You can keep this." I knew then I didn't have to die and I was suddenly filled with hope and gratitude.
One month later, I was called by the EP for a follow-up , progress, how are you feeling today kind of chat. At the end of this short discussion he gave me his cell phone number and said "Text Message Me with any questions and I will get back to you in no more than the next day"
Before you go Dr Solvarie what do think about ablation. He replied that he had done over 700 ablation procedure with an 80% success rate. We had our phone on speaker so my wife heard the whole conversation. We hung-up and my wife and I talked about my options.
Two weeks past and my QOL was improving slowly the meds were working a big help. Dr. Evans had asked when I being was discharged, feeling pretty good, "You didn't think I could do did you? I said "No I didn't think you could do it". He smiled and started to walk away say over his shoulder, "Thank you for being honest"
I continued to research Ablation procedures wanting to find more confidence in this medical marvel. I had joined the forum and I read everyday or so. Then I found it! A YouTube video uploaded by a Clevland Clinic cardiologist talking directly to camera as his patient was being prepared for the cryoablation procedure. 21 minutes later I texted Dr. Solvarie and asked this question "Do you have all the equipment you need to perform a "Touch Sensative CryoAblation?" He answered 4 Minutes later with more the yes. He went on to tell me he had the lasted tech available and offered to answer any questions. I simply cut the chase. "I want to be on your calendar for the procedure"
I am coming up to April 29, 2023, which will mark two years of NSR for my wonderful heart.
As has been my many, everyone has their own journey. my life-style changes are helping. I am now a 77 year old man who is grateful every day. I do not worry or stress about anything I can't control. No excercise beyond walking about 1 mile three time per week. I still take medications as prescribed. I research everything I eat, drink or put in my mouth. No watching the News. My wife can handle that job, I frankly don't want know who died, was stabbed or robbed, raped left for dead. I don't want to hear the stories I do not trust my ability to handle the NEWS. I try thinking positive as much as possible. Anger, resentments and discontent is no longer welcome. If I die tonight I pass a happy and grateful man. Best of Luck
Wow! What an interesting story of those two years in your life.
Thank you very much and I’m so glad that the ablation worked for you.
I have a couple of questions!
How complicated was it for them to give you an ablation when you already had wires in your heart for the ICD and has it gone off when it didn’t need to again?
Hi Slidingdoors99: The EP said at one point he "bumped into one lead/wire and it didn't move as the tissue lining the heart had accepted the presence of this wire and it was firm and embedded well into the tissue." That was good news . The question has it ever gone off since the first fiasco? No and I have acquired 4 Blue magnets, which I keep close. One in the car, another in the night stand. There's one placed in my workshop and the final one is next to our living room TV. This one I have purposely left the medical tape wrapped around it as a reminder that I should be grateful for everyday.
I thought about you on and off today. The HCM condition you live with, sounds like a sticky problem as you face this AFIB as well. The both of them I am confident with youth working in your favor, plus a good medical team will put it right. Your life-style is the only thing which you can change. The four things involved are clearly, genetics, age, life-style and luck.
What you eat is super important. I want all the best for you. This forum gives freely of what they find and what we experience, becomes the next persons manual for surviving AFIB.
Lastly, you may want to consider researching this problem on YouTube; and stay in touch with your fellow contacts here.
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Ablation 2 🙁
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Tuesday’s the big day! Ablation #2! 
