we all need to thank SHANNON - great info he's providing

Shannon I read alot of your posts and especially the recent Xarelto / Pradaxa / Warfarin and missing anecdotes ....great stuff that we all need to know....as you know I was ofered Pradaxa and declined...using Lovenox Shots and Warfarin instead following my 8/21 ablation ......BTW I'm at 2.0 today! yea! took 10mg p/day for 5 days

We have a frined, female new afibber....6 months 6 or 8 episodes but she's on Xarelto......I had never heard of it........I begged her to ask the EP why if she is not in afib is she on it?? she knows when she's afibbing....it's not quiet / silent

freaks me out! she will not listen to me

but thanks Shannon you are coming up with some very valuable info here!! keep it coming

Tom P

PS I am 17 days post ablation and feel 100% - perfect , HR stll upper 70's though

Good news Tom P, glad to hear it!

And agree on Shannon- we have needed some Hawaiian wisdom, good to have.

EB

Thanks Shannon appreciate all your informative posts.

Tom - I totally agree. With Shannon's long afib history and other health issues, he's a classic example how taking responsibility for one's health by learning all one can to make sure they get the best possible treatment approach. Thanks Shannon!

Jackie

Many thanks for the kind thoughts TomP, EB, McHale and Jackie ...

The truth is, though, that I've learned far more from everyone here which makes this site such a great example of how a message board can work well and serve everyone's interest. After all, while we each have to plow through our own unique challenge with this stubborn beast of a condition through our own experience and decisions, this board really does make real the sense that we are in this together!

I might never have learned of, and then met, Drs. Natale and Haissaguerre had I not stumbled on this site in summer of 2003 right after my regular cardiologist had nearly killed me during a nuclear imaging/thallium stress test he was doing as a precursor to switching me from Sotalol to Flec.

That lucky find of Han's site was a true God send if there ever was one! I remember it was on a Thursday that I had that very rough experience in the hospital, and I then googled and found this site looking for some help outside of my obviously clueless Cardio. I spent the entire next three days devouring everything I could on this site and first learned of the distinction between vagal and adrenergic AFIB .. That next Monday I saw the would be, though unintentional, executioner of a Cardio as asked him three key questions that I had learned over the weekend from this site, when he had never heard of vagal AFIB that was the cherry on the cake and I promptly but courteously fired him and hired a really good EP.

The rest of the story many of you know well by now. In any event, its very much a two way street here and I'm just as grateful for everyone's willingness to share their experiences, and those too who contribute so much like Hans, Jackie, GeorgeN, Erling and so many others of you that have continued for so long to offer new insights and issues to explore, even when AFIB is no longer the dominating presence in your lives that it once was.

The other two main sites like Stopfib.org and A-fib.com also offer some useful and interesting information, but no place gives the kind of in-depth real-world 'nuts and bolts' experience like Afibbers.com ...

Mahalo!
Shannon

Hello Shannon,

I would like to add my thanks for posting the "real world", hugely important information about the dangers of the new anticoagulants. This information is not likely to be published in mainstream medical journals anytime soon. Also thank you for your kind words about afibbers.org. Actually, there are now 3 web sites in the "group":

[www.afibbers.org] The main site with The Afib Report, resources, faq's, etc.

[www.afibbers.org] This and other bulletin boards

[www.afibbers.com] A comprehensive, searchable database of information pertinent to afib prevention and treatment.

Hans

Shannon,
It sounds like you've had your share of ups and downs with the medical community. Don't know what your cardio did during a stress test to try and end you!! Yikes!

With regard to vagal and other classifications of afib, I have a different perspective regarding those issues. I don't think it matters in the long run. Such distinctions have value only in avoiding triggers, both dietary, positional, etc, and maybe providing some direction with medications to reduce the trial and error element somewhat. In the long run though, it all boils down to a bunch of abnormal, easily-stimulated foci - the sensitivity and (perhaps) number of which only increases with time regardless of non-surgical treatment means (with a very few exceptions as noted by those among us who have staved off the seemingly inevitable). So, depending upon the cardio's training, they may or may not give a fig about such distinctions yet still be capable of progressing a patient to a better life. Information readily gleaned from the medical community admits to the eventual failure of both rate and rhythm control drugs (for nearly all patients) either by acclimation and/or the progression of the disease itself. Avoiding triggers, both dietary and positional, certainly makes life more bearable, and may buy some time - (tho' likely at some surgical success-probability cost, as in my case), but does not seem to stop the progression of the disease either. So, is a cardiologist who is ignorant of the in-depth itinerary of transitional-stage afib incompetent to treat? Not necessarily, IMO.



Tom



Edited 1 time(s). Last edit at 09/09/2012 03:43PM by Tom B.

Tom,

I have to agree with Shannon that he was right in dismissing his cardiologist when he found out that he did not know the difference between vagal and adrenergic afib. I dismissed one of my early cardiologists when he suggested that I have an AV node ablation and pacemaker.

As you point out knowing whether you are vagal or adrenergic is important in designing your trigger avoidance program. For example emotional and work-related stress is a trigger for 94% of adrenergic afibbers, but only affects 29% of vagal afibbers. Heavy meals and resting/sleeping are frequent triggers for vagal afibbers, but hardly affect adrenergic afibbers at all. When it comes to terminating an episode vagal afibbers, particularly men, can often do this by running up and down stairs or by performing some other activity that rapidly elevates their heart rate. Adrenergic afibbers, on the other hand are better off if they lie down and rest or perhaps even take a quick-acting tranquilizer.

Most important though is knowing the difference between adrenergic and vagal when prescribing drugs for preventing recurrence. In our very first LAF survey (February 2001) I made the following observation:

A preliminary comparison of the number of episodes experienced by afibbers on preventive drugs and afibbers who took no drugs showed that drug users tended to have more episodes (23 versus 19 average over 6 months) than did non-drug users. The episodes were similar in duration. At first glance this seems rather improbable; that preventive drugs would actually make things worse. However, taking a closer look at the prescription pattern it becomes clear why this could indeed be the case. Over 70% of afibbers with the vagal variety were prescribed drugs that are known to worsen their condition (digoxin or beta-blockers).

Further evidence for this prescription problem cased by ignorance of the difference between vagal and adrenergic afib came in LAF Survey 2 (March 2001)

Twenty-six of the 35 vagal afibbers (74%) were taking antiarrhythmics or other drugs to prevent further episodes. There is ample evidence that vagal afibbers should not take digoxin (Lanoxin), beta-blockers or antiarrhythmics with beta-blocking properties as these drugs will markedly worsen their condition[2,3]. Yet of the 26 vagal afibbers on drugs 14 (54%) were on a drug contraindicated for their condition. These people spent an average of 105 hours in fibrillation (over 6 months) as compared to 40 hours for the people on the drugs best suited for vagal LAF flecainide (Tambocor) and disopyramide (Norpace, Rythmodan). Even vagal afibbers taking no drugs at all spent less time (90 hours) in fibrillation than did the people who were on the wrong drugs. Vagal afibbers on flecainide did the best and spent only 23 hours in fibrillation and had an average of 6 episodes (average duration of 3 hours) over the 6 months. This compares to 6 episodes (average duration of 24 hours) for non-drug users and 24 episodes (average duration of 13 hours) for people on contraindicated drugs. There was no significant difference in age or time since diagnosis between the drug and non-drug groups.

The above findings were corroborated in the Euro Heart Study reported in 2008. [www.afibbers.com]. The authors' conclusion was:

“Physicians do not seem to choose rhythm or rate control medication based upon autonomic trigger pattern of AF. However, the role of autonomic influences should be taken into consideration in order to achieve an optimal management of the disease as non-recommended treatment may result in aggravation of the arrhythmia.”

Hans

Hans,

I agree with everything you point out, however, other than finding a drug more appropriate to a current afib manifestation (mine has changed over time) I don't see the value of type distinction at the professional level in the long run - when, for the majority of us, the disease continues to progress and change. And, as I have noticed with my cardio, the decision to assign a specific drug is related to the symptoms themselves, not a class of afib types such as "vagal", for example. She immediatley knew that in my case, beta-blockers would be counter-indicated, something I had already known due to experience. So, in effect, a cardiologist knowledgeable of the symptoms that relate to a certain drug treatment would not necessarily have any use for such general terms - especially if their training (including ongoing training) has a focus elsewhere.


I'm not defending those cardiologists who are inept, I'm just pointing out that there are different methods and perspectives that likely lead to the same end point - and sometimes a quick judgement (which I almost made) will deprive the patient of what could have been superior service.

Tom

Hi TomB

The reason I dismissed the original Cardio, who was a very nice guy, by the way, and who I got along with fine, was for a number of reasons. But his ignorance of even the terms Vagal versus Adrenergic AFIB, having never even heard of such a distinction and asking me what it meant, made it loud and clear that he was not up to speed at all on the current literature as is commonly known in the EP world.

Prior to going on Sotalol after the pacemaker implant 9 months before, he had me on digoxin and high dose Toprol XL for some years with instructions to me that whenever I trigger into AFIB I was to take an extra half tablet of a 50mg Toprol XL 'every half hour' until I converted to NSR!!! ...Since Toprol will never convert you to NSR itself, I was regularly overdosing on Toprol which led to a drug induced tachy-brady syndrome which, ironically, became the basis for the pacemaker implant to begin with! That, and so I could take Sotalol to control the AFIB which without the pacer would push me even deeper into Bradycardia.

I would regularly hit 32 bpm with long pauses during my Toprol upward titration protocol in the midst of an AFIB episode, leading to the very worst and most dangerous symptomatic arrhythmias of my life during that summer of 2002, in which I would swing from deep bradydardia at 32bpm with long irregular pauses to suddenly jumping to 180bpm of highly symptomatic AFIB and then back again to bradycardia... see-sawing back and forth for hours until eventually I would mercifully convert back to NSR.

It was a nightmare period and all because I was clinically overdosed on Toprol on top of the digoxin .. both of which are contradicated in primarily vagal AFIB. Yes, ultimately these distinctions tend to fall away as AFIB progresses, but as Hans noted above it does make a difference in drug therapy and learning better trigger avoidance earlier on giving you more NSR time overall which is always a plus. Besides, I want a Cardio who at least knows the terms and at least a little of what they signify, even if only enough to realize that applying such distinctions has mostly a utilitarian benefit during the earlier to middle stages of AFIB progression.

The final straw was when this Cardio was trying to switch me to Felcanide, six months after I had gotten the pacemaker installed and had been switched, thankfully, from the Toprol and Digoxin routine to Sotalol only. But after 6 months the Sotalol stopped helping control the AFIB well enough too, so he ordered the nuclear imaging/Thallium Stress test to rule out any CVD prior to switching me to Flecanide.

I read the Thallium stress test preliminary instruction sheet the hospital gave me saying you had to stop any Beta-Blockers prior to this tests. I called the Cardio's office to ask if I had to stop Sotalol since it was about 50% Beta-BLocker and 50% anti-arrhythmic drug more or less? He relayed via his nurse back to me that I should not stop the Sotalol, which the front desk of the Imaging center at the hospital also confirmed when I asked them the same question. They were both wrong!

During the thallium stress test, he could not get my heart rate above 105bpm due to the beta-blocking action of the Sotalol on board and so he injected a large bolus dose of Adrenaline in my IV.. He then was carrying on talking to the imaging technician about the latest University of Hawaii football game when I suddenly doubled over on the table feeling totally clammy and ashen with my teeth chattering so hard I was sure my teeth would be crushed into powder!

At the same time, I looked at the Blood pressure meter that my arm cuff was attached too and it had jumped to 230 over 115 and climbing. It felt like someone had just buried a hatchet in the middle of my brain and was blowing up a balloon inside the center of my head at the same time! Beyond the worst headache ever imagined, for sure.

I yelled out that something wasn't right and when the Cardio saw my blood pressure he panicked and yanked the entire IV tubing and needle right out of my arm and started waving his hand in front of my face asking how many fingers he had and told me I was having a Cerebral Aneurysm!

He then told the technician to take me to an MRI immediately and call the neurosurgeon. The technician then told the Cardio that I couldn't have an MRI since I had a pacemaker and the Cardio replied: "Then turn the damn thing off"! Even I knew what the Technician then told the Cardio, that it wasn't because it was on but because it is made from magnetic metal. Of course, the Cardio knew this too, but he was genuinely in a panic mode.

He asked me who he should call and then literally disappeared and I never saw him again until the following Monday in his office when I dismissed him. I lay there for 45 minutes on the table after the technician covered me with layers of blankets, all the while thinking I was dying for sure with a burst aneurysm in my brain and no one told me a thing!

What had happened was the sudden large IV dose of Adrenaline had decoupled the Sotalol leading to a vagal rebound effect that shot my BP through the roof! Gradually, the BP started to return to normal while I was laying on that table waiting to fade out to what ever comes next. And I literally felt like I had been beaten all over my body with large steel reinforced rubber hoses. Finally the technician returned and said "You can go home now Mr. Dickson' .. "What?!? I thought I was having an aneurysm"?? Add he said: "It doesn't appear so as your BP is returning to normal now, but you need to see a neurologist as soon as you can arrange one"... That was it!

So as you can see TomB, I had plenty of good reasons to find a better AFIB doc for me! In addition, this Cardio insisted I start life-long Coumadin even though at that time I was clearly paroxysmal AFIB with episodes maybe every two months or so and that never lasted more than 6 to 8 hours at a time. Also, at the time I had a CHADS2 Score of '0'.

When I showed him the published American and EU Cardiology Consensus Guidelines on AFIB at that time that I had found on Afibbers.org that first weekend after discovering this site, and that both documents confirmed that I should NOT be on Coumadin, he just scoffed at the fact and said that this was only 'researcher knowledge' and researchers are all mostly failed doctors who cant make it in the real world of treating patients". :-) And he insisted I was going to have a stroke soon, for sure, if I didn't heed his warning and start Coumadin way back then in 2003!

Finding Afibbers.org gave me the knowledge and support to get to a good EP pronto, after which my whole experience with managing AFIB took a dramatic turn for the better.

I have since that time seen it confirmed many times over that most every Afibber should eventually (the sooner the better) get a good EP and not just stay under a regular or interventional cardiologist for their care. There are no doubt some exceptions, but the vast majority of regular Cardiologist are simply not as up to speed on all the nuances and cutting-edge of dealing with AFIB and other arrhythmmias, regardless of how certain they may be that they are perfectly qualified to do so.

Shannon

Shannon,
I was never doubting you had good reason to leave that cardio....man, you are lucky to be alive! I too had a cardio who put me on Toprol, with similar, but less extreme results. Pulse too slow, with horrible angina from the heart not beating fast enough to feed itself during exercise!

Hopefully, that cardio you had is not representative of the breed - why is it the arrogant ones are usually the worst? Wow.
Glad you're still around, feeling better, and posting such informative info.

Tom

Actually Tom,
My original Cardio is one of the most respected in Hawaii and was the head of Cardiology at the largest Medical Center in the state for a long while. He might be retired now. He isn't a bad doc within the areas of his specialty ( interventional cardiology and 'squishing stents', but it is just a good example of how the field of cardiology itself has evolved into so many sub-specialties because it is simply too big a field for a general Cardiologist to really be on top of something so specific and high tech as Electro-physiology.

The problem is so many old line Cardios who are so used to treating AFIB the way they always have when the options and knowledge were so much less than now, still don't realize the big gap they have in competence and thus many or unlikely or even unwilling to refer to a EP unless you really press them too. I think Everyone who has AFIB should at least have an EP on their treatment team, and they should be the head doc for AFIB care.

Thanks and take care,
Shannon

When highly recommended cardio number 2 told me he didn't believe in vagal or adrenergic afib and that digioxin was his favorite med, I was done with him. We would have hour long "discussions" about this. My GP used to get a big laugh out of the reports from that guy. #2 was a bright guy. Before I could fire him, he referred me to his EP partner (I'm sure he was tired of seeing my face in his exam room). After I told the EP my story he said, "you are obviously vagal and there are certain meds we will not prescribe for you." Hallelujah I thought. I had to bite my tongue to keep from suggesting he needed to give his partner some in-service training.

I echo Shannon's comments about finding this board and the quality of information provided/discussed here. I found the board in Aug. of 2004, and it led directly to the afib remission program I started in Nov. of that year and continue to use today. It was the information out of Hans' first book that gave me the confidence to stand my ground with cardio #2.

Thank you Shannon for all your great info, and to all those like Jackie and Erling who give so generously of their time.

Thanks Hans for making this all possible!!!

George

Shannon:

When I first started having episodes of AF, which started orginally because of too much thyroid meds, my Md put me on a beta blocker. The beta blocker made me very hypo and I felt like crap, I started having periods of almost blacking out when going back into Nsr from an AF episode, the doctors said I had sick sinus syndrone. By this time I had an EP and he rushed me into having a pacemaker inplanted. I had the pacemaker inplanted in 1999, I have just now been told that my battery is about out and they want to put in a new battery. I was told this in June, I haven't had it done as yet, I have had two episodes of AF and have not had any problems when going back in NSr. Sick sinus rhythm is hard to diagnose and since I have not had any probems I am questioning rather I actually need this proceedure, my doc. said ssr doesn't get better, I am questioning whether I in fact have ssr because my rate on my pacemaker is set on 50, and my heart rate is always in the 60s, I believe that when I had the almost blacking out problems I was very hypo and the beta blocker is what was causing my problem. As you can see my pacer held the battery for almost 13 years, my EP is insisting that I get the new battery, but I am undecided, did I really have ssr or was it the beta blocker doing me in, they don't need to do anything with the wires just the battery. All comments are appreciated.

Liz

Liz, is it possible to remove a pacemaker?

Tom:

Yes they can but it is operating on the heart, they don't like to do it and neither do I----I can just leave the wires and battery in, that shouldn't be a problem.

Liz

Shannon,
Thank you for taking time to tell us your cardio Dr history. You and the others on this site are IMMENSELY helpful -- not just in that you help
us with the medical/biological part of the equation, but also in that you help us with dealing with the other aspects of living with afib.
In November of 2007 I had an Afib episode of a few hours and went to ER and was put on 50 mg Atenolol (which rightly or wrongly I took before going to bed).
In early January 2008, I had an afib episode and fainted. Then went to a cardio dr. It was decided because (a) I apparently had a pause going in and out of afib, (b) my normal heart rate was low (around 48), (c) the Dr's wanted me to be in a position that if down the road I needed medication that helped afib but slowed my heart rate, a pacemaker would offset,and (d) the drs liked the idea of having a heart recorder going all the time (pacemaker).
In Feb 2008 without a whole lot of thought on my part (I did not know it at the time, but the atenolol was causing several side effects including anxiety and vertigo -- at least I believe it was the atenolol), I signed on for a dual chamber pacemaker. At my request after the "installation" I asked the dr to switch me to a different beta blocker -- one that I had been on years before-- metoprolol/lopressor. The vertigo, anxiety, short term memory loss went away.
For a year or so I kind of tried to deal with the afib ( I got very symptomatic episodes of about 2-4 hours once a week or so. Some at night some in the day) with lifestyle and supplements. Finally, I agreed after about a year to go on Flec daily and my episodes since are only about once every 6 months and of very short duration (the pacemaker tells us). Because for the moment afib is short and infrequent they took me off warafin.
Had I gone on the flec right away and it stopped the frequent episodes, I don't know whether they would have put a pacemaker in.
You are right Shannon when it went in, they said no MRIs for you in the future.
But I read a year ago now that they can do MRIs with people who have pacemakers.
Anyone know the scoop on this?

AGAIN, THANK YOU HANS AND ALL ON THIS SITE.............

You're welcome Tibbar, Liz and George, and PeggyM (from a different thread) sorry I have been scarce the last days, my wife and are on the way to Chicago for a big four day BHRT (hormones) conference and thus am relegated to typing on my IPhone :-/...

Will try to catch up when its easier when back home next Tuesday...

Yes Tibbar there are more new pacers designed to work with MRI machines. However if you already have a pacer like We do with metallic leads, those leads can spoil the party still unless you went to the more extreme step of having them removed. Something I would never recommend unless they went bad AND there was some compelling Ssume like infection or inflammation around the leads that justified trying to remove them...

I'm afraid that until they figure our how to
Make MRI machines more compatible with or older metallic equipment, then the MarI friendly Pacermakers and leads will be only for the 'virgin' pacer user...

At least that is my understanding of where things stand now.

Shannon