New poster trying to figure this thing out

I keep hearing that not having an ablation may lead to converting to permanent afib. What does this mean anyway? Would it be a continuous high heart rate plus erratic rhythm? How is that worse than having unpredictable paroxysmal afib? Know that it is hard on the heart so that is not is afib.

Also, when the meds cease effectiveness, where o where does one go but to an ablation? In my search for an EP that truly understands all the facets of this disease, to a one they all say ablation is the only "cure"....while acknowledging the possibility of needing more than one.


31 Replies

  • Hi there CCW66. It's not easy to figure out AF because everyone has their own brand. Some people have it occasionally and it wipes them out and lots of people have it all the time and don't know about it. It can be fast or slow, very irregular or much less so. It progresses as you say, becomes more frequent and for longer sessions and moves from paroxysmal to persistent and may - in time - become permanent. Ablation may be a fix but, who knows, in the fullness of time may be only a temporary one! But AF is a condition rather than a disease or an illness.

  • Hi,

    Don't think they claim it is a cure but rather stops af for variable length of time. There are various figures circulating about the chances of PAF becoming permanent - one I saw said about 30 per cent by the end of a five year period- course that means 70 per cent didn't. If you have frequent episodes of AF it does change the heart a little so that the electrical signals can move about more easily and that is why is can be a progressive disease- will wait for others to give their experience- all will vary depending on why you have AF in the first place of course

  • AF is almost always progressive. It is not the drugs stopping working but the condition getting worse. No-one can predict the course as it has never been a one size fits all condition.

    Most people find that they start with an odd attack (event) and may not have another for ages. Then they start to get closer together and last for longer. Others do not know that they have AF until the stroke which cripples them. Better to know and be treated surely.

    If untreated AF can lead to enlarged left atrium (cardiomyopathy) and in extreme cases heart failure but controlling the rate drastically delays this possibility and controlling the rhythm may eliminated it. Ablation like all treatments is only part of the story and mainly about improving quality of life. Many EPs consider early intervention by ablation as the best chance of a successful outcome but as for cure, the golden bullet, who knows. I'm now in my ninth year AF free since my last of three ablations and as you may guess am a great fan BUT we are all different with different levels of risk acceptance.

    My best advice is to go to AF Association main website and read everything you can about AF and treatment as knowledge is power.

  • BobD, obviously you are in your element this evening, this is the best concise and at the same time thorough explanation about afib I ever heard, good job and thanks.

  • Thanks.

  • Just to reiterate that we are all different. I have paroxysmal AF with rates of 180 to 200 when I have an episode ( not had one for 3 years, controlled on meds) .Diagnosed on my first episode in 2011. My husband is in permanent AF with no symptoms but very irregulariy irregular pulse around 60. I do have days when I pee a lot and feel on edge as if I'm teetering on having an episode but pulse remains regular.

    It is not helpful to me, and may not be to you to think too far ahead. I know we are allon this forum because we feel we should take responsibility for our health but there is a reason why cardiologists and EPs know such a lot. They see countless different people with different facets of AF affecting them and as a result of their training and experience they advise us and share their knowledge. We share anecdotal experiences which are also very valuable, so between us and the professionals we make a good team.

    The more you read round the subject on RELIABLE websites ( AFA for one) The better placed you are to make an informed decision about a treatment plan. By all means read research but be very wary as many of us do not have the skills to recognise whether research is good or bad and we clutch at the bits we want to be true!!

  • Spot-on advice about reading reliable (and for me, uplifting) websites - when I was first diagnosed I thought my life was coming to a rapid end, not helped by gloomy reports and some other sites. I only come here now - as much as I need to know.

  • Strange is this AF thing...I was PAF from 2009 until early this year. In April i went into persistent AF and if I am perfectly honest..the AF is easier to live with now than when I was PAF. I have less symptoms and less stress worrying whether or not I will go into AF because I am in AF all the time. I am pretty lucky my heart rate is anything between 70 and 90 and blood pressure normal. We are all so different medication consists of 2.5mg Bisoprolol spilt into 2 x 1.25mg daily. I am also anticoagulated on Apixiban. I don't take any other drugs at all. Roy

  • RoyM, did you have a fast heart rate without medication during PAF episodes or was your heart rate always slow during episodes with or without medication? appreciate feedback.

  • Hi captain when I was PAF I wasn't anti coagulated but I did take Bisoprolol 2.5 mg daily when in NSR my resting HR was typically 50-55 but when I slipped into AF it could be as high as 150. Now I am in persistent AF my heart rate remains between 70-90 with no symptoms at all.

  • My untreated AF did indeed lead to Dilated Cardiomyopathy. So I feel it is best to do as much as you can to keep your heart in SR for as long as possible.

  • When you say untreated, does this mean you were on no meds at all?

  • I went from af episodes lasting 2-3 hours to days to permanent af in just over two years. I also now have a diagnosis of dilated cardiomyopathy. I had an ablation 9 weeks ago and despite having a few episodes after this and my cardiologist deciding on whether extra mess or ablate and pace (extra mess decided on in end) feel better than I have in weeks. I was very unwell when in af heart rate very irregular breathless chest pain. Since the ablation feel like myself. If I had the ablation when first suggested to me two year ago maybe my af might never have become so bad. But you never know. Everyone is different but this site brill in advice and support given x

  • That's extra meds lol x

  • Wow--af affects all so very differently. Anyone out there have successful ablations at all? Sounds like it is a temporary fix at best and a beginning of even more ablations. Seems like we all suffer from something that medical professionals/researchers are still relatively clueless about why it starts initially and how to stop it permanently. Think af sufferers reach a point at which we grab at whatever is available to us and hope for the best only to find a new set of issues present after ablation.

  • There are, I think, lots of people with successful ablations. For some reason - I can't think what it could be - they mostly seem to lose interest in posting here. Except BobD, of course, whose wisdom continues to enlighten us.

  • Yes, actually I have to say I am impressed.

    I think if I had stopped having AF for 9 years, I would not have the motivation and dedication to keep going and keep informing people as Bob does.

    Thankyou Bob, it is noted and much appreciated!

    And thankyou CCW66, this is a question I could not articulate myself so it is very helpful to read your thread.

  • CCW666 Yes very successful ablation, however the rest is very low dose warfarin and 40 mg twice a day of sotalol. (best for me because it detoxes through kidney and my liver detox pathways that sotalol goes thorugh underfunction--genetic--meaning the dr. would not know what dose I was actually having ); avoid all triggers and take certain foods and certain supplements. It is interesting for me to realize that the following things help superlatively in keeping my sinus rhythm normal:

    Tai chi;

    raw goat milk;

    shilajit ( by Jarrow- an adaptogenic electrolyte that donates or receives electrons to the electron transport chain in the mitochondria for atp production --energy but not too much)--this is basically trace minerals obtained from thousands of years of dead decayed animal and plant material between rocks in the Himalaya mountains.


    If you had asked me previous to my knowledge of these things what they have in common--I would think-- nothing. I also did not know about elctrolytes and trace minerals before and that most people living in a modern advance d country probably have deficiencies of these things.

  • Love hearing this! So much info out there that I need a filter to discern what is true. The preponderance of ablation posters seem to describe a never ending loop of new symptoms or recurring afib after the procedure. So happy that yours worked!

  • CCW66 It worked because I had an extremely excellent ep; I was in the 3rd best heart hospital in the whole USA; and I have a heart that is in excellent physical condition; I was extremely physically active since forever; and then all the supplements, foods, trigger aovidance, meditation tai chi etc etc. raw goat milk and pasturized goat keifer are very good for your heart. Tai chi coordinates your 4 brain waves. It is really good stuff.,Mozart symphony # 40 in G minor also lowers your heart rate, as per scientific study comparing this with the effects of ABBA, and also Strauss waltzes. Abba did nothing, and Strauss had a minor effect. Also I liked the shilajit electrolyte trqace mins. So ther are a lot of things you can do to make your heart function more normally.

  • Please name the hospital and dr if you feel comfortable doing.

  • CCW66 I do not know what country you are in. My doctor and the hospital is in Rochester New York., in the United States. If you are from out of town they will put you and a family member up for free in a hotel near the hospital.They accept Medicare and all (most) insurances.The hospital is STRONG MEMORIAL HOSPITAL in Rochester., New York. The electro physiologist is Dr. Mehmet Aktas and his electrophysiology lab crew of 3 other doctors (eps) and an incredible staff.

    This is an incredible hospital with amazing procedures and research and brilliant doctors. If you go on their website and look at the qualifications and experience of their doctors you will be impressed.

    They accept public donations to add to research posts. If I had the ,money I would donate $10,000 in honor of Dr.

    Aktas and his staff--that's my opinion of them.

    P.S. the reason I feel very comfortable ( I know you meant just psychologically ), is that my heart is normal. What a relief!! Before the ablation it was a chaotic electrical mess and felt unbelievably terrible.

  • Thank you. I am in Fl and very appreciative of your info. I am looking at Dr Natale and Cleveland Clinic in Ohio. Will be very happy to have a third option. Seems a given that travel is required.

    Anyone out there that had ablation in NYC ?

  • CCW66 NYC is not best place I think, but Cleveland Clinic is 2nd and Mayo Clinic is first. Dr. Aktas had a residency at the cleveland clinic before being hired by the new head of cardiology at Strong Memorial in Rochester NY to be an ep there. Wish you good luck and good health.

  • I hope they are still around and not posting because they are healed and enjoying life.

  • That's probably the case!

  • I started with a-flutter, cardioverted with meds. Over some months that evolved into paroxysmal AF. I didn't mind the arrhythmias themselves, but it concerned me that it might happen when I need strength, like capsizing my canoe on a wilderness trip, which I do twice a year (the trip, not the capsize).

    So I went ahead with an ablation over a year ago and haven't had anything odd but some ectopic beats.

    My decision was based on a lifestyle choice. It may well have evolved into permanent AF. Your mileage may vary.

  • I woke up in my first full-blown afib attack 11 days ago. No insurance. The ER charged $2044 for about an hour and I converted on my own after arguing strenuously to remove the automatic blood pressure cuff that was extremely painful (a known test for fibromyalgia, yes that hurts a lot so take it off). Luckily a lady there signed me up for the Oregon Health Plan and said I would be covered.

    So I started researching. I'm a lab tech and can understand a bit more than others not in the field. I was pleasantly surprised to find this info about weight loss, as I am against using a blood thinner and meds. Previous to the AF attack I'd lost about 10 pounds using intermittent fasting - going as long as I can without eating, shooting for 16 hours fasting and then eat only during 8 hours. I can do that about 5 days a week.

    "Obese patients with atrial fibrillation who lost at least 10 percent of their body weight were six times more likely to achieve long-term freedom from this common heart rhythm disorder compared to those who did not lose weight, according to a study presented at the American College of Cardiology’s 64th Annual Scientific Session."

    10 more pounds to go. I need to try to go a little more low calorie during the 8 hours to speed things up. I reluctantly take clonidine to reduce constant flushing and blood pressure. The doc talked me into trying digoxin and my heart rate is up from around 70 to 90 which might help as I apparently was having small episodes as I was falling asleep, and could make them stop by moving around. None the last 2 nights.

    Check out the entire article about weight loss.


  • when not going into normal sinus rhythm and having continual elevated heart rate the following changes occur in your heart: the architecture of the heart changes. this means the size and structure of various parts of your heart change--but in a bad direction--leading to more afib and also to serious underfunctioning and malfunctioning cardiac issues. For example. your left atrium becomes extremely dilated-- putting the area for recieving the electrical signal in the wrong location. The left atrium starts to hold too much blood; the wall of the left ventricle becomes thicker--at a certain point the left ventricle cannot pump strongly enough to send the required amount of blood to all body parts. this is called ejection fraction. When your ejection fraction is40% your mean arterial pressure is probably 65 or below ( how much blood your whole body is getting), and you have heart failure and need one of those motorized carts and an oxygen tank.

    The heart generates new pathways for extra afib--basically afib begets more afib.

    Two areas of turbulent blood flow during afib are the mitral valve and the aortic valve. This turbulance being abnormally high will cause plaque to accumulate on the leaves of the mitral and aortic valves eventually causing them to cease functioning, if afib is not stopped. Continual long term afib is also highly correlated with aortic plaque and total aortic valve stenosis--a fatal condition. All these things involve life saving emergency surgery and artificial valves or in the case of the mitral valve a valve repair ( better results than replacement for this valve)--and the hospital I use is so expert they even do heart transplants ( 20 in 15 years)- with a 48 person waiting list. HOWEVER--why would you want to go through all that if it could be avoided by an ablation--some low dose sotalol and warfarin, some supplements, certain foods,some exercise, meditation and avoiding triggers.??

  • As I have been on this forum for a few years now, I am pleased to see recognition that there is no one-size-fits-all treatment. It can be very off-putting to be told that you MUST follow a particular course of action. Nor does it seem that AF ALWAYS follows a particular pattern.

    I can remember, for instance, someone demanding to know why I wasn't requesting an ablation and why I wasn't on Warfarin (as opposed to anything else).

    We can only share our experiences of what has and hasn't worked for us as individuals. It would be nice if there was a near 100% guarantee for any type of treatment but there isn't.

  • Mrspat,

    Exactly. We are diagnosed and then plunked down in a system that has little patience for meds as opposed to ablation. I am hoping these decisions are not driven by economics but I have my doubts. Lots of $$$$ invested in ablation set ups that must be recouped. On the other hand, maybe it (ablation) is the only hope for a normal life but good luck trying to the poor patient trying to figure it out.

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