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Percentage of Afibbers who end up getting an ablation

Posted by Doreen 
Percentage of Afibbers who end up getting an ablation
September 25, 2014 12:16PM
McHale Wrote on another thread:
-------------------------------------------------------
> > Eventually no matter how many lifestyle and diet
> changes we make, an ablation is needed to reset the
> heart.
> We all seemed to have gone the ablation route on
> here.

It does seem like most of us end up needing an ablation - I suspect mine will be scheduled early next year. I had a good 5-year run with propafenone, but it's not fool-proof. I will not switch to another medicine, and my episodes (infrequent though they are) are symptomatic enough that I don't want to do this for the next 20-30 years. Just curious to see the percentage of afibbers on this board (or in the general public) who eventually "give in" and have the ablation. I tried a search, but wasn't successful. I also realize the people who post here are usually the ones still having an issue and therefore the results are skewed. I also know there are some long-termers here who manage to stay out of afib, but they seem to be the exception.

Thanks.

Doreen
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 12:23PM
As far as AF is concerned and touch wood but ablation is the best thing I did. So far 2 years out it has worked.
This was a standard PVI.
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 12:45PM
Over ten years and still doing well with supps and the occasional PIP Flec. I'm able to live the active life I want. I wouldn't hesitate to get one if my control deteriorated.

George
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 02:10PM
George in a great model of what can be done with nutritional/electrolyte control and life style/trigger avoidance long term, but he is an unusually proactive, diligent and investigative character as well which has greatly aided him in his successful efforts.

Also its not only up to great diligence and fortitude as many of us were similarly dedicated and applied exhaustive heroics, as I did, for many years to managing the beast with a combination of nutritional/ dietary and life style modifications and trigger avoidance and did quite well for around 6 years following that approach to a T. I had much better control and for 5 years was off all cardiac drugs, but still was having the occasional breakthrough and a slow but steady increase in underlying remodeling was taking place.

By late 2007 to early 2008, some 16 years after AFIB first appeared in my life, and in spite of doing just about everything right, I started to lose control over it and the episodes kicked in with added frequency and much longer duration up to 20hours at a pop from the maximum 4 to 6 hour duration episodes I had typically had in the first 16 years.

I had already done my due diligence over the intervening 5 years largely inspired by my discover of this site in 2003, and had narrowed down my ablationist choice to either Professor Haissaguerre in Bordeaux or Andrea Natale here in the US. Since I was living in Amsterdam at the time from 2006 through 2010 I naturally saw Prof Haissaguerre first with a visit to Bordeaux which was very impressive and I was fully prepared to go with him and have it done there ion France even though with only US health insurance I would have had to pay for it 100% our of pocket in Euros at a time when the exchange rate was peaking at $1.60/Euro !!

My first visit to Dr Natale in San Fran during a stop over on a three week return visit to my long term home in Hawaii for visa renewal, was a deal clincher as I was every bit as impressed with him as I had been with Prof Haissguerre and had the added advantage of full insurance payment.

Its no news that I am eternally grateful for all the inspirations and serendipitous occurrences that finally landed me on Dr Natale's table in Aug 2008 to begin what has been a resounding success in quelling a very difficult persistent AFIB case which mine shifted into from long standing paroxysmal AFIB in May 2008 after a pro-arrhythmic 1-to-1 flutter episode in Holland from a PIP Flecanide dose made for the very worse day of my life with this beast, and after which that same day after they finally converted me back to a very unstable NSR for a few hours, I slipped right into highly symptomatic and very difficult to control persistent AFIB that had me in and out of Dutch hospitals every week to 10 days for the next three months with the Dutch Cardio's trying in vain to get my rate under control before flying to Austin to get this thing fixed. Finally just before boarding the long flight from Amsterdam to San Fran where I had a follow up meeting with Dr Natale just before flying down to Austin for the ablation, my Hawaii EP over the phone came up with a cocktail that did help bring my persistent AFIB rate down mostly below 100bpm from the 145 to 165 it has been the prior months for the most part. ( that was a miserable three months I can tell you!) The combo was 800mg of Verapmil a day and a very low dose of extended release Toprol of 12.5mg/day.

Moral of the story. I am a firm believer and supporter of doing everything one can conservatively and using replacement of critical nutrients and electrolytes that have gone missing in our aging process of from stressors and/or toxicities etc, but just don't stretch it out too long in the face of failing control over the arrhythmia. My rule of thumb is that once you start getting more than one of two episodes a year even after doing everything in your power to control it, then you are playing with fire dragging out going for an ablation with the mind playing all of its games to convince you next time you will regain control and . 'if only I try this tweak things will be better again'. If you are both very diligent and dedicated AND have a bog dose of good luck you might be able to stretch things out for a good long while yet, but the odds are high that most folks will likely need an ablation to really achieve long term real world success and not just a marginal compromise in which some degree of control gives the person the false impression that they have arrested all underlying progression of the disease process.

This is a disease that most often responds best to a multifaceted battle plan and using all the tools at our disposal as may become necessary in the wide array of manifestations this condition can and will impose on us all to one degree or another over time.

Being too reticent and too gun shy will only tend to set you back longer term, in spite of it only seemingly been the most appealing and prudent step in the moment.

Shannon
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 03:40PM
Shannon:

It appears that you went into a bad run of AF because of the drug Flecanide, my EP doesn't prescribe it, he doesn't seem confortable with it. I had my first taste of AF in 1996 because of taking too high a dose of my thyroid drug, I sometimes go for a few months without an episode, it at least hasn't gotten any worse during all these years. I am vagal so I usually just go to bed, sleep most of it off, I don't have to get up and go to work so it is easier for me.

We aren't hearing on this board about some of these ablations that have bad outcomes, there have been a few deaths as well. I understand that a person needs to go to the top doctor, I would like to know if that top doctor has any bad outcomes. Sometimes there isn't much choice, as in your case, but for me, I don't think I am that bad and in my age group an ablation may not always be a positive outcome.

Liz
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 05:37PM
Everybody says it just gets worse, but I am successfully fighting in the other direction.
,
3 years of undiagnosed Asymptomic permanent AFIB, leading to Cardiomyopathy (EF 20%),
Then 4 years of persistent AFIB using constant Anti-Arythmics, (recovered EF to 64%)
Followed by 1 year of paroximal AFIB using only Flec PIP,
and now this year, I'm going get off hte Flec altogether.

All done with no Ablation!
Re: Percentage of Afibbers who end up getting an ablation
September 25, 2014 06:37PM
The problem with the drug alternative, is that in some cases-such as myself, the only experienced near-death situations are the result of drugs, not the underlying condition. I almost bit the big one while on Toprol XL and had a horrible high BPM lengthy tachy while on flec. We're all different, and if someone can sustain the life they want without an ablation that is great, but that wasn't my case. With regard to the downside of ablations, many ablation centers publish their outcomes, including deaths. One reason I was fairly comfortable with Silicon Valley Cardiology performing my ablation(s) is that no deaths or otherwise horrendous outcomes had occurred in spite of them having done thousands of ablations (also they don't use catheters which sealed the deal...LOL...).
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 03:02AM
Doreen that is a pretty hard question to answer. Afib has been happening forever. I was lucky to live in the era of ablations and had mine after 5 years of afib burden when it became a daily event. My dad went into permanent afib years ago and has lived on Warafin for over a decade. He has also experienced a stroke and two silent heart attacks. Another person I have met had a pacemaker installed years ago, and from the sketchy information from him it would appear to have been installed because of afib. He is dying as we speak. Another friend that I played hockey with has accepted the drug path and is now in permanent, and with ill health.

You can find a list of afibbers on this site who allegedly cured themselves with nutrients. I have no doubt that some of them were successful, but also many of the stories were from early in an afib career and I suspect their stories were not fully experienced at the time of writing their articles, at least that was my take on it.

It would seem that most progress to the point that having an ablation is a better choice than trying to live with it, but only if you can track down a maestro.

I have just heard of an individual who was ablated locally in Calgary and received 63 burns. I am trying to track down the name of the obviously very inexperienced doctor so I can post it here. If you are going to subject yourself to a doctor with that kind of track record, you might just be better off going with drugs and permanent afib.

Ron
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 10:46AM
I agree with Shannon’s assessment about doing all one can to reverse the afib tendency with the known, natural methods and it should be emphasized that can take a considerable amount of time and diligence before results are seen. When that doesn’t last consistently and you don’t have a life outside of dealing with afib, it’s time to consider an ablation with one of the top tier, elite EPs.

At the very least, when you go through these heroics, your heart and whole body is in a far better state of health than initially. Six months to a year on a conscientious revamp of diet and lifestyle plus repletion of core, essential nutrients allows for the very best possible chance for afib reversal or for ablation result as well.

There are numerous former afibbers who posted reports on their success curing their afib by dietary changes and diligence in repleting the missing essential nutrients. Currently, many are well beyond ten years of success without recurrence or have very occasional occurrence.

Erling Waller and Fran Ross are the original members offering their success story in several posts along with the testimonials Peggy M collected for “The List” of former afibbers who cured themselves by natural methods. I still correspond with many including Trent who cured his afib by going gluten free.

Also of concern and consideration is the fact that, these days, there are many people who don’t have health insurance or have limited coverage out of network or limited funds that preclude the expense of traveling or paying out of pocket. That scenario is much more common today than it was 10 years ago and will probably continue to escalate so it remains very important that the fundamentals of what this forum was all about originally; that is, learning how to circumvent afib by natural means remain current and accessible to new readers. That was what set this forum apart from all the others. Either way… ablation or not… it’s a win-win for the person who goes the extra mile and becomes totally aware of nutritional deficiencies that can contribute to atrial fibrillation and other interrelated malfunctions.

I’m working on a report that’s about mid-way complete regarding why some people seem unable to hang on to the magnesium and are considered magnesium wasters and then what that means in terms of ongoing afib.

Stay tuned.

Healthy regards to all,

Jackie
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 10:52AM
Anti-Fib,

Would you please post your story in more details.

Thanks!

George

The cases that Ron alludes to were captured by PeggyM. She was very diligent in marking them with the heading "The List" in the Subject. Later she compiled these in CR61 <[www.afibbers.org]

Compiling these was a heroic effort on her part. She kind of burned out after that and nobody has taken up the charge.

As to how people are doing, it is hard to say. I know that Peggy continues posting here.

As far as whether control is possible, I've been on both sides of the street. When I don't have it figured out. It seems not possible. Then miraculously I've happened onto a strategy that works for me and my control is good. My own sense is that the earlier in their afib history someone tries an alternative strategy, the higher the probability of success. Certainly, even with huge effort and heroics many will not be able to achieve success. I always think it is worth a shot, but if you don't see improvement, which I define as longer times between afib episodes as well as shorter duration episodes, then it is time to go to a top ablationist.

One of my blessings is that I've always responded well to PIP flec. It usually converts me in an hour or so, with a few exceptions. The first two times I used it took 20 hours. The first one converted a 2 1/2 month episode, so the fact it worked at all is miraculous. The prescribing EP said it wouldn't work. The next one was a month later and I probably still had atrial stunning from the 2 1/2 month episode. During my divorce, when I was stress eating cheese and thereby overconsuming calcium, I had an episode that took 4 hours to convert.

Because PIP flec works for me and usually works quickly, it gives me the luxury of some time to experiment when things aren't going the way I want. This is without adding a lot of remodeling to my atria. Nearly two years ago, during my cheese eating, I had a week where I had afib nightly for 4 nights in a row. I was ready to put my name on Natale's list. I started using 200 mg flec before bed, which stopped the episodes from happening. I then started titrating down. I wanted to get the dose as low as possible so I 'd still be able to use a PIP dose to convert, if needed. About this time, Hans posted on using ginger. So I added in a tablespoon of powdered organic ginger spice with my pre-bed flec and continued the downward titration. I titrated the flec to 0 mg over about a month. The ginger worked well enough to limit my episodes to monthly. It was then that I figured out the cheese/calcium connection. Stopping cheese consumption returned control to good and I had one episode after 15 months. Is it perfect, no, but workable.
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 01:04PM
Too bad you had to give up cheese! Camembert with a good Bourgogne is a nice combo (in moderation of course :-))
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 01:06PM
After struggling with paroxysmal AFIB for about three years I was ablated by Dr. Natale on March 4 at UPMC in SF. My left atrial diameter had been increasing in size (it was 4.7 cm) and that finally forced my hand. The procedure was straightforward and did not involve the LAA. I have been in NSR ever since. I take no supplements and I am off all medication. A recent echocardiogram confirmed that my left atrial diameter has decreased to 4.3 cm in a little more than six months. I am exercising just as much as I ever did. I understand the concern -- and we all react differently to medication -- but I wish I had seen Dr. Natale two years earlier -- I'm 58.
Anonymous User
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 03:11PM
Hello everyone,
I want to thank Doreen for creating this post and everyone for their comments because they address some of my concern and questions.
I am scheduled to have an ablation with Dr. Natale next Friday 10-3-14. I'm paroxysmal 48 y.o male and started my afib career about almost 2 years ago. I have never tried any meds to fight the beast, so I don't know what's life like with Afib meds.
I know I'm fairly new to the condition and could wait further down the line for better technology to do the ablation, but I decide to go ahead anyway since I don't really like to keep constantly watching out for triggers and not knowing when the beast shows up which really bothers me mentally. I tend to do fine with supplements and life style changes to control it, but I'm very symptomatic when it shows up. I'm fit, eat and live a healthy lifestyle, but once in a while, I would like to have a glass of wine or beer, or eat cheese or Chinese food or any kind of food that might or might not have MSG and not worry that I might have to the price later. Is that too much to ask? :-)
Hence, I decide to proceed with Dr. Natale.

Deluge, I'm hoping I can have a good result as you did. Congratulation.

Wish everyone well and steady NSR.

Duke
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 03:39PM
HI Doreen,

I'm inclined to agree with McHale, although a few stalwarts such as George really do manage to keep the beast in check. I've been living with the "stealth bomber" for 5 years and finally decided to throw in the towel when I had a TIA/Stroke (depending on the doctor interpreting the event) last December. I do not believe I am naturally stroke prone; I am a paroxysmal a fibber and had been following Hans' recommendations for avoiding stroke (vitamins,etc; and all my markers such as CRP, homocysteine and so on were/are excellent). However, I'm like Tom B: my near-death experiences relate to drugs. In this case I had a quite unbelievable allergic reaction to a topical corticosteroid that was prescribed for misdiagnosed eczema. I believe I was in a highly inflammatory state, which caused my blood to hyper coagulate. And, I now know, corticosteroids deplete your body of potassium...so I had the triggering AF attack.

All of which is to say, once we reach a certain age the bullets start to fly and we spend more and more time dodging them. Given my extreme sensitivities to drugs, etc. I want to do everything I can to minimize the chance that a bullet will find me. So I'm scheduled to have an ablation next month. Thanks to the folks on this board, I feel I've made an excellent choice in the doctor who will perform the procedure. I'll keep you posted on further developments.
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 03:57PM
Best wishes Judianne and many thanks for your reply.

What steroid cream were you prescribed for that eczema-like rash, was it Clobestsol cream by any chance? Just curious here. Some of those steroid creams are very powerful and its important to take DHEA or other anabolic replacement hormones too with them to help counter the many catabolic effects, at least to some degree and can make taking short term doses of even stronger glucocorticoids a bit safer. Nevertheless, taking the strong stuff which delivers cortisol or hydrocortisone equivalent doses significantly above your own natural endogenous daily cortisol production levels should always be taken for the briefest period of time possible. They can be life saving anti-inflammatory drugs at the right time and dose for the right urgent condition, but its a shame so much of medicine has apparently forgotten basic physiology and have ignored supplying also added anabolic hormones, especially when they are already low as is so often the case in people over 40 to 50 years old, when ever such a strong gluco-corticoid steroid is prescribed as well.

Alas, only the rapidly growing list of MDs who have been fellowship trained and certified in bio-identical hormone replacement therapy seem to have gotten that message as it was never even considered during traditional medical school training. Don't blame an otherwise excellent doctor from not begin aware of this issue.

Shannon
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 05:22PM
Well, that's very interesting. Unfortunately, I disposed of the cream so I can't tell you what it was. But I sure had a dramatic reaction to it.

I'm just one of those people who reacts to things. (In contrast to my husband who says he can take anything.) Jackie has me exploring methylation issues (my naturopath is on this one, too) and I have a high level of histamine intolerance and am gluten intolerant. I also can not take aspirin.....That took me decades to figure out after countless fruitless visits to allergists. All of which is to say there is no way i'm willing to try the anti-arythmic drugs, which many people far less intolerant than I am seem to have problems with. And to be frank, I'm not getting any younger. Although I'm in excellent health except for my AF problems, I don't want to fail another drug strategy (I flunked out of 101...Beta blocker + aspirin...a whole other story, also the aspirin subset) and find myself wanting an ablation when I may actually feel that I qualify as an elderly person.

That's why I concluded that ablation is best strategy for me. I want my life back...and so many of you have said that' s what happens with a successful procedure. I look forward to it.
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 05:31PM
Sounds like you are ready Judianne and have taken the time and effort to make a good choice for your EP to handle your procedure.

Best wishes and Im sure you do fine and be very glad to get this behind you.
Take care, Shannon



Edited 1 time(s). Last edit at 09/26/2014 05:52PM by Shannon.
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 07:09PM
Doreen, I had an ablation 2.5 years ago after having paroxysmal AFIB for about one year. I was on diltiazem and propafenone for a while without success. As the episodes became more frequent, I decided on an ablation. I went with Dr. Ellenbogen at the VCU medical center in Richmond, VA. Like Deluge, I am now off of all heart medications. However, I still do the strategy to hedge my bets.

Jim



Edited 1 time(s). Last edit at 09/27/2014 07:19PM by mailman52.
Re: Percentage of Afibbers who end up getting an ablation
September 26, 2014 09:28PM
Deluge: When you wrote: After struggling with paroxysmal AFIB for about three years I was ablated by Dr. Natale on March 4 at UPMC in SF. My left atrial diameter had been increasing in size (it was 4.7 cm) and that finally forced my hand.

What causes ones left atrial diameter to increase in size?
Re: Percentage of Afibbers who end up getting an ablation
September 27, 2014 01:06AM
Atrial stretching and fibrosis from too much AFIB will increase your LA diameter.
Mine went from 3.9,4.1,4.3 to eventually 4.5cm, then stroked out!

As for ablation-Here's how's it done;get diagnosed, then wait to long while on FLEC, worry your mind silly every time your heart goes haywire, wondering when it'll stop, year after year, try every supplement, convince you're you got it licked after maybe of month of quiet, try another combination, Walla that's it you say, watch your atrium enlarge further, worry some more, can't pull the trigger yet, no way I'm letting someone burn holes in my heart, hear about FIRM a much more targeted approach where less burns is more, loose all hope as you spend Labor Day weekend in and out of AFIB as you stroke out trying natural blood thinners that don't work,luckily it happens at work staring at your screen going speechless while your Boss asks you questions,rushed to Hospital, end up in the ER where the Neurologist notices your smile is not symmetrical, keeps you overnight, MRI reveals tiny vascular lesion, released 3 days later on Xeralto, now you want FIRM ablation but realize it's really a pipe dream, -Shannon calls one Sunday out of the Blue a year later,tells you Natale is coming to New York this month, waiting at St Lukes to talk with you, anxiously you book an appointment for initial consultation, meet with him day after Memorial Day Weekend 4 years to the day of your diagnosis, after 45 min meeting he asks-McHale what are you doing this afternoon, nothing I say, you want go now he says, YES i yell out, and 2 hours later I'm on a propofol ride with Natale's magic hands manipulating the RF catheters in my heart, 5 hours later in recovery.....16 months out now in NSR!

Eat drink and be merry, all in moderation and take your supplements and live a healthy lifestyle.

McHale



Edited 1 time(s). Last edit at 09/27/2014 01:19AM by McHale.
Re: Percentage of Afibbers who end up getting an ablation
September 27, 2014 06:49AM
Interesting. Is an echo the only way to check the size of your LA?
Re: Percentage of Afibbers who end up getting an ablation
September 27, 2014 10:52AM
McHale's tale is a good story framework many of us can relate to. Can you imagine what our world would be like if the ablation procedure did not exist?



Edited 1 time(s). Last edit at 09/27/2014 02:43PM by Tom B.
Re: Percentage of Afibbers who end up getting an ablation
September 27, 2014 02:21PM
Thanks for all the replies and the collective wisdom of this board.. Since the propafenone worked so well for me for a long time, I saw no need for the ablation, and in that five year period, I believe many strides have been made in the procedures. But, propafenone isn't as effective as it used to be, and I worry that I am taking a chance that even an infrequent episode may be the one that turns into a persistent or permanent afib.

I have a consultation in January with Dr. Schweikert, and unless all is silent on the heart front from now until then, I will put the wheels in motion for an ablation. I will still faithfully continue with the magnesium and potassium, will still avoid the salt and MSG, will still eat a healthy diet, but maybe after the ablation I won't be on pins and needles wondering if an occasional glass of beer or wine or even decaf coffee will cause the dreaded afib, while other people around me can happily indulge in eating and drinking whatever they like without a blip in their heartbeats.
Re: Percentage of Afibbers who end up getting an ablation
September 27, 2014 05:41PM
Sounds like a good plan Doreen, Dr Schweikert is a good man and would be a fine choice as an ablationist, particularly for someone with your AFIB history.

Agree on all the points you said about post ablation and the more relaxed range one has afterward, while also being smart to continue protecting your heart and indeed entire body with a good diet and targeted nutrient supplementation as an on-going permanent part of your life.

Best wishes.
Shannon
Re: Percentage of Afibbers who end up getting an ablation
September 28, 2014 04:27AM
Hi George,

I remain interested by your success with ginger. I too respond well to Flec. Both as PiP (works within an hour every time) and as a daily med (175mg/day - 25mg 8am, 50mg 6pm and 100mg 12pm). First diagnosed LAF in 1999 at age 38 (but recall having episodes as far back as late 80s). Familial LAF - mother (aged 75 had it since her mid-30s but didn't go permanent until age 70) All episodes between midnight and 7am. Currently 2 to 4 episodes per year. I'm tall at 6' 4" so with familial AF history too I'm doubly likely to get AF!

How much of the raw organic ginger powder do you use, at what time in the evening, and what do you take it with?? Do you thing a tablet supplement form would be equally effective and maybe less 'rough' on the digestive system? Also, do you think it helps principally by raising bpm through the night and thus countering the overly strong vagal effect that might be playing a large role in initiating the nighttime LAF in the first place?? I'd like to get the Flec down to say 100mg/day as a start if I could (for a large chap that's quite a small amount) and perhaps ginger could assist me in this regard. What do you think George??

Many thanks in advance and with best regards,

Mike F.
Re: Percentage of Afibbers who end up getting an ablation
September 28, 2014 06:27AM
Mike,

What was the highest number of episodes you had in any particular year? You are on flec daily, with only 2-4 episodes a year? How many do you think you'd have off the flec?

-Eric
Re: Percentage of Afibbers who end up getting an ablation
September 28, 2014 10:32AM
Hi Mike,

First, I went against convention for trying to keep my flec level constant. I only took flec just before bed as my episodes tend to be early morning. During the worst part with my poor control, I was also subject to episodes brought on by the vagal aftermath of sex, with cold (frozen) food and lying on my left side.

I'm not sure what the minimum effective dose of ginger is. As is my style (of overdoing), I started out with a heaping dinner spoon of organic ginger spice 2x/day. I backed it down to 1/2 tsp morning and 1 tsp before bed. I'd just toss it in my mouth and swallow with some water.

As to tablets, why not? I think that is what Colin (aka Colindo) has successfully used. Here is a search on his ginger posts <[www.afibbers.org] as well as mine <[www.afibbers.org]

The following is what I wrote for Hans for The Afib Report

George

Ginger may be beneficial for vagal afibbers.

A quick summary of my afib history. Afib started about 8 1/2 years ago, at age 49, most likely brought on by chronic fitness. It was always a vagal trigger, mostly coming on in the early morning around 3AM. Initially I had episodes every 10-14 days for 6-9 hours. They were self-converting or with exercise. After 2 months, afib progressed to a persistent episode that lasted 2.5 months. This was converted with a loading dose (300 mg) of flecainide. I started a supplement program including potassium, magnesium and taurine. Initially around 2 g/day K+, 800 mg/day Mg++ and 4g/day taurine. This has varied over time, with Mg generally increasing to as much as 3 g/day (always to bowel tolerance). Whenever this failed, I used 300 mg flec to convert, usually in an hour or less. Over 7 years, I used about 10 doses of flec. I consider these supplements foundational for my afib remission program. I had a great increase in personal stress starting a year ago. This coincided with a great increase in afib frequency. This culminated a little over 2 months ago with nightly (mostly 3AM) episodes terminated with 300 mg flec. The conversion time increased to from 1 to 4 hours.

Along with the increase in afib frequency, this last year saw relatively frequent excessive vagal responses to 1) cold food or drink, 2) laying down and 3) the aftermath of sexual orgasm. These excessive vagal responses included a slow heart beat of around 40 BPM, sometimes accompanied with a significant number of ectopic beats and sometimes afib.

The nightly episodes were distressing and I thought I’d soon be booking an ablation. I decided to try the vagolytic med propatheline bromide (Pcool smiley. There are several papers by James Reiffle MD that refer to this approach. I reasoned if I could stop the excessive vagal responses, I could preempt my afib. I convinced my cardiologist to support this effort, however, as PB is little used it would take some days to fill the prescription. While waiting for the script to fill, I decided to use flec before bed to see if I could preempt the afib. Flec also has vagolytic properties. I successfully started with 300 mg and after one night dropped this to 200. I began slowly and successfully titrating downward. Periodically I would still notice abnormal vagal responses. I would treat these with more flec.

After reading Hans' recent posting on ginger, I started taking a heaping dinner spoon of organic powdered ginger 2x/day, which I later reduced to 1/2 teaspoon ginger in the morning and 1 tsp in the evening. The abnormal vagal responses with their ectopic beats ceased immediately.

This gave me the confidence to tirate the flec downward much more quickly. Ultimately, I stopped it altogether. I quit taking the flec altogether about 6 weeks ago. With the exception of one afib episode the early morning after I pigged out on carbs at a Christmas meal, I have been afib free since starting the prophylactic flec and this has continued on the ginger. In my analysis the vagolytic quality of the flec was at least partially responsible for my success using it prophylactically. This has been perhaps replaced with the vagolytic quality of the ginger - a much better answer, in my book!

My biggest challenge to this routine is the aftermath of orgasm, in the morning10-12 hours after taking the ginger. This can lead to a slow heart and ectopics, but has yet to lead to afib, on the ginger. Orgasm a few hours after taking the ginger does not lead to ectopics. I can feel a very stable steady heart beat. The obvious answer is ginger on the nightstand.

I will also sample my radial pulse after getting in bed. The other evening, one out of every 30 beats was premature or a "skipped" beat. I got up and took 1/2 tsp of ginger. I sampled my hear for 120 beats with no premature beats. Early in my afib career, the one out of thirty ectopic frequency would presage afib during sleep.

I think ginger certainly has potential for vagal afibbers. I am unaware of any negative side effects, in my case, or in the literature. One note of caution, I understand that ginger has blood thinning properties, so those on blood thinners should investigate this further before using ginger.

I've continued with my supplement program throughout.


This is a dramatic turnaround in my afib remission program -- from nightly afib to no afib in 5 weeks. I know this is a relatively short time in the afib world and that things can change, but the results have been so dramatic I did not wan to wait to post. Thank you very much Hans for starting this, and for everybody else that took the bait and relayed their results!
Re: Percentage of Afibbers who end up getting an ablation
September 28, 2014 11:47AM
erich Wrote:
-------------------------------------------------------
> Mike,
>
> What was the highest number of episodes you had in
> any particular year? You are on flec daily, with
> only 2-4 episodes a year? How many do you think
> you'd have off the flec?
>
> -Eric

Hi Eric,

Had 4 episodes last year. 2 so far this year. For last 6 years on Flec probably averaged 3 episodes/year. Before starting daily Fec was getting an episode per month. If I wasn't on daily Flec now? Certainly an episode per month I'd think. At a wide shouldered 6' 4" bloke I figure 175mg per day is a reasonably small dose.

Cheers,

Mike
Re: Percentage of Afibbers who end up getting an ablation
October 03, 2014 06:17AM
McHale's description made me laugh. It EXACTLY summarise my first 12 years of AF. I had a mini-stroke in July - a couple of months after I put my name down for an ablation. I tried everything to try to stave off the beast, but in the end, it's come down to this: I'm sick of beating myself up over initiating one of my triggers, and the great likelihood is that if I don't have an ablation, the path to permanent AF open up. The full-blown stroke risk with that is just too great. I appreciate everyone who puts so much effort into natural methods to control their AF. But, doing that for 12 years (or more) is just exhausting.
Re: Percentage of Afibbers who end up getting an ablation
October 06, 2014 11:41AM
McHale.....I too was adamant that I did not want anyone burning my heart. However, I also did not want to be tetherred to the damn anti-arrhythmic medication!! It was not only expensive but it did not completely stop the episodes. Also, did not want to completely alter my lifestyle....exercise and eat farily healthly....but enjoy socail drinking when I want.

Consequently, I reclutantly opted to go see Natale in Austin to learn more about an ablation (would never have happened had I not discovered this site!!!!). At no time during my discussion with him did he try to persuade me to have an ablation....only discussed my options and potential for a successful outcome. A couple of points he made really struck home.......the anti-arrythmic midications are toxic and they all eventually lose their efficacy.

Ultimately, I decided that regardless of how I felt about an ablation it was the only viable course of action avaiable for me if I wanted to have the opportunity to live a normal life. Now 3 1/2 years post-procedue I have not had any issues nor do I take any medication.

interestinlgly, I asked Natale his opinion in reference to supplements (which I learned about through this site and still take)......he said they don't do any harm but probably just waste your money.


Steve
Re: Percentage of Afibbers who end up getting an ablation
October 06, 2014 08:28PM
Well it isn't exactly true about "the anti-arrythmic midications are toxic and they all eventually lose their efficacy.", I have taken one propafenone at night before bed and it is still working, George N. takes an anti-arrhythmic drug if needed and it works for him as well, we all do what we think is best for us.

liz



Edited 1 time(s). Last edit at 10/06/2014 08:30PM by Elizabeth.
Re: Percentage of Afibbers who end up getting an ablation
October 08, 2014 04:12AM
You always here about all these Heart-warming stories about how some Creepy EP Ablationist rolls out the red carpet for some total stranger, and alas somehow is able to perform an Ablation almost on the spot. (maybe several hours later).
The Ablationists make a hell of alot more money performing their Ablations, than sitting in an office telling patients that their condition can be much improved by simply taking everyday supplements. The studies are going to show success in things that are profitable for the Medical Industry period.

Example: No large studies or trials done on Magnesium to convert paroximal AFIB.
But their's always some new wonder drug out their either AAM. or for Heart Failure, or Anti-coagulation that has major studies showing how their patented $400 a month drug is spectacular.

1st Pradaxa was the wonder drug for Anti-coagulation, now major problems with it, then Xarelto was the hot-ticket, now I see advertisements on cable TV that Attorneys are preparing lawsuits about that drug.
Re: Percentage of Afibbers who end up getting an ablation
October 09, 2014 11:20PM
Anti-AFIB,
Are you insinuating that Dr Natale is a creepy EP that took me on the spot to make money?
I diligently did the magnesium thing and everything else to try to stem the tide and I had a STROKE!!!
Ever been on the other side of a stroke looking looking out, not being able to speak and looking at your computer screen at the gibberish you just typed........after spending 3 years fooling yourself you got it licked with supplements?
You don't want to ever be on the other side.

I sit here with a calm heart after 16 months of meeting and being ablated by the the most professional caring honest hell of a human being that sacrifices countless hours flying all over the country trying to cure AFIB sufferers of this dreaded most complicated disease.
Yes I pumped my fist in the air when he asked me if I wanted to get ablated now! His waiting list is out 6-9 months so I was given a gift and I thank my lucky stars everyday.
I workout religiously, drink a few cocktails on weekends, eat what I want but usually healthy and don't worry about AFIB anymore but always know that if I needed a touch-up Natale would be there waiting with open arms or would gladly go to one of his proteges!

McHale
Re: Percentage of Afibbers who end up getting an ablation
October 10, 2014 03:35AM
McHale:

I'm sorry I was speaking in generalities, not specific to your case. I have heard many acounts with other Doctors of patients having an impromptu ablation, followed by a second one, and they still had AFIB. I do doubt that hardly any Ep's that perform Ablations will recommend supplements. The supplements have helped some like me, but not at all cured the issue.
I just saw a Youtube video of a guy that got 5 Ablations for his AFIB, and he thinks his Doctor(s) are great, because he got a little NSR out of it.
Re: Percentage of Afibbers who end up getting an ablation
October 10, 2014 12:47PM
Anit-Afib

Want to explain my situation.

Not sure when I first experienced arrhythmia but from diagnosis to alblation was under three years. With the exception of the stroke, my situation is similar to McHale's. Had I not learned about Natale through this website not sure where I would be today.

I progressed from "pill in the pocket" to daily medication during that time frame. Even on the anti-arrhythmic mediation still had episodes and also major side affects. Initially was on Rythmol but switched to Multaq because of the side afftects with Rythmol......regardless the medication was extremely expensive.

Two difference cardiologists plus Natale told me you may be able to identify potential triggers for atrial fibrillation but very difficult to find the cause.....probably genetics. I tried to eliminate many different potential triggers including caffeine, alcohol, spicy foods, etc........but nothing seemed to have an impact. Eventually, I began to have episodes both during and after exercise.

As I stated previously HATED the medication!!!! Wanted to live a lifestyle of my choice. It was like playing Russian Roulette. So, began to change my position on an ablation.

Took three months to schedule an appointment with Natale in Austin. I asked him if he thought there was any chance my arrhythmia would go away......stated no. He added that it may not get any worse......but most likely will. We discussed the toxic issue surrounding Multaq that was in the news at that time.....stated that all of the medications are toxic. Again.....he never tried to persuade me to have an ablation. Again....he stated that all anti-arrhyithmic medication will eventually lose their effecacy over time. He said that should the Multaq quit working entirely, the next medication would be more toxic.

He showed very sincere concern for my situation. In fact he knew that I was very hesitant to have an ablation.......stated that he is scheduled for months in advance and suggested that I get on the list.....could always cancel if I did not change my position on an ablation. That was in November 2010 and he was scheduled through April 2011.....his office told me they would contact me when they started his May schedule....so did not have an ablation scheduled.

Bottom line.....did not want an ablation but absolutely did not want to continue living with a time bomb!!!! As fate would have it received a call from his office during the Christmas holidays.......a cancellation had occuured the week after New Years.....did I want it. Surprisingly, said no!!!! Was still not ready. Fortuanately, I again was contact by his office at the end of January......a cancellation for March 10. While I still was not completely convinced to have an ablation I accepted......could always cancel. I didn't.

So now it has been 3 1/2 years since March 2010 and am blessed that I have expereinced no issues!!! From the intial appointment to now I was assigned a nurse educator who was my contact at Natale's office. She coordinated my post-procedure montoring for one year. However, I have been able to direct questions to Natale through her with very quick response.

During my wait in his office for my first meeting with Natale there was a man who had just undergone his fifth procdure. Without hesitation.....should I require another ablation will be headed to Austin as quickly as possible.


Steve
Spring, Tx.
Re: Percentage of Afibbers who end up getting an ablation
October 11, 2014 06:57AM
I take it the 5-Ablations were not accomplished exclusively by Natale?

I wonder if there are any posters on this site who failed 1-2 Ablations with Natale.
My Doctor said the referrals that he has sent to Natale have failed, although I don't think it is a large number.
ron
Re: Percentage of Afibbers who end up getting an ablation
October 11, 2014 08:58PM
I had a recent appointment with DR. Natale to determine if an ablation is appropriate in my situation ( age72 with12 years of afib that is pretty much controlled by flec at this point). He didn't say that I should have got it taken care of sooner, but I am sure my chance of success would be more if I had. What they did say was that we can only start from where I am now. He did not try to push me into one, but did say that it would probably get worse from this point. When I ask about chances of the flec lasting a number of years, the answer was that in some people, flec is effective for a very long time. Hard to say if I would be that lucky.

I was able to get in to see him in one month and was offered an ablation in Nov. or Dec., so the wait times in the San Francisco office is not that great.

One thing that I was surprised about is his recommendation about blood thinners. I have no risk factors except age even though I took Coumadin for 7 years having recently stopped. First words he said after his initial hello was to get back on blood thinners. I was a bit surprised after reading the advice given by some on this website. I have been getting afib 4-6 times a year with extra flec stopping it in a couple of hours, so I was thinking that clots would not be an issue with the short duration of afib. Eliquis is the drug that he likes best.

He and his NP answered all my questions at the time. One thing I wish I had ask is what chance of afib being worse if he is not successful in my ablation.

I will probably go ahead with this procedure sooner than later. My biggest concern at this time is that I don't have a good support system anymore for any complications I might have. My EP is retired and I haven't got in line with another one yet. All I have is a NP to answer heart related problems at this time.


Ron H.
Re: Percentage of Afibbers who end up getting an ablation
October 12, 2014 02:41PM
RE Blood Thinners:

We just discussed this in the Forum a month or so ago.

What came out of the dicussion, was the belief that Doctor's try to err on the side of caution, as a stroke is devastatational an if it would occur would a liability issue.


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