New to the group

Hi everyone,

I'm new here and wanted to say thanks for the help in advance. I've been reading the monthly report past few issues and enjoyed it. Even shared a couple of articles with my EP at Stanford. I'm actually due to see him on Thursday this week and hoping to be a little better prepared before. If it's possible to receive some advice about my rhythm question before that would be great.

I'm a 45 year old male with lone and asymptomatic paroxysmal Atrial Fibrillation, otherwise healthy. I was diagnosed during my routine annual in Jan 2014. I'm currently on Diltiazem (120mg once daily) to control my rate. I have not had an ablation and do not take an antiarrhythmic.

Overall, I notice that my Afib does decrease my sports ability and tires me out a little more. I get a little lightheaded occasionally when bending down and coming up quickly. My blood pressure is normal and I do not take aspirin or anticoagulants as my CHADS VASC score is a 0. Otherwise, I am in good health except for a recent finding of high cholesterol of 220 and LDL of 152. I have made some dietary changes to correct that. My BMI is 24. I do not take any supplements but am curious if those would help. I've been reading about fish oils and others. I am also practicing stress managment techniques as much as possible.

My last Zio patch in Aug '14 indicated a burden of 48%, a max HR of 213, min HR of 41 and avg HR of 70. There were also a few episodes of RR intervals the longest being 3.3 seconds. My electrocardiologist also believes that I may have a subtle conduction system abnormality as well.

My last echocardiogram in Feb '14 showed normal left ventricular size with normal left ventricular systolic function, Ejection fraction appox 60%, Trace mitral regurgitation, Trace tricuspid, and Mild left atrial enlargement.

I have just completed a new Zio patch session and echocardiogram. I will discuss those finding with my EP at Stanford on Thursday this week. I have had the AliveCor ECG for about a week and notice every time I use it I'm in AF, which is suggesting that my burden is increasing. The latest Zio will answer that question.

I'm still trying to understand this condition and have a variety of different questions, but one is when should I consider more aggressive rhythm control therapy, such as an antiarrhythmic or an ablation? My EP at Stanford currently believes that since I am asymptomatic I do not warrant an ablation, especially given the associated risks. One concern that I have is myopathy or atrial remodeling. I have read about the work Dr. Marrouche in Utah is doing with his DE-MRI. I was thinking of seeing him.

[healthsciences.utah.edu]

I should mention that I do also have access to Dr. Natale at CPMC here in SF where I live. I have read great things about him.

Thanks!
Que

How long was the Zio patch in place?

What is your HR while in AFIB? for example, mine varies from 80-110. The fact that you can tell it decreases your performance indicates that your AFIB HR is too high, probably over 100.

How long do your episodes last?


A first priority is to make sure you have rate control during episodes. Keeping your rate close to your normal NSR rate, will prevent Cardio-Myopathy, and also greatly lessen the symptoms.

One way or another, NSR is your goal, even if asymptomatic. Being asymptomatic gives your more time to find a solution short of getting an Ablation.

Since you are not taking AAM (anti-arrythmics), I suggest now is the time to try Magnesium supplementation.
Mg has greatly helped several of us here that were like you. Mg helps balance the electrolyte levels in the Cardiac cells of the Heart. Just relying on Blood tests to determine electrolyte balance is insufficient, as Intra-cellular electrolyte levels may and often differ from Blood Serum levels. There is alot of info on this site about Mg supplementation, and IC electrolyte testing (Exatest). On the Mg supplementation, you basically take as much as you can through various forms, to what is called "bowel tolerance" when your body can absorb no more Mg, and you get a laxative effect.



Edited 1 time(s). Last edit at 03/18/2015 09:21AM by The Anti-Fib.

Welcome, Que.

Your first thought should be magnesium deficiency as most afibbers are definitely found to be deficient and the general population overall, trends to over 80% deficient. As long as you have healthy kidney function, you can begin to supplement with magnesium by ramping up dosing until you reach bowel tolerance. See these reports:
[www.afibbers.org]
[www.afibbers.org]

If you have insurance and can get your doctor to order the intracellular electrolyte test from Exatest.com, that is the quickest, most accurate way of determining not only the levels of the key electrolytes, but also their ratios inside your cells. Serum and blood cell values do not reflect the intracellular levels... and inside the cells is where electrolytes work to regulate electrical conduction activity.
See www. Exatest.com

It's very important to assess your sodium (salt) intake as that competes with potassium and when potassium is low, it makes it very easy to slip into arrhythmia...especially when magnesium levels are also low.
Potassium/Sodium Ratio in Atrial Fibrillation [www.afibbers.org]
Read the links here about potassium... [www.afibbers.org]

Also, be very mindful of your hydration habits. AF can be the result of dehydration, AF can be the result. Drink pure water and avoid treated municipal water. This link offers a post on hydration from July 2007... the title is missing for some reason. It was originally "Hydrate Safely -What's in Your Water?" [www.afibbers.org]

Our website has a search feature in the upper RH part of the page below the headings. If you type in each of the various key words, ie, Exatest, magnesium, potassium, taurine, exercise, hydration... etc... you'll find a trove of valuable tips to help you.

Also, go to the yellow boxes across the top of the page and click on Afib Resources... and start reading. There are reports that detail using supplements and other useful tips on what you need to know about Afib.

The more you know and can do about normalizing various deficiencies, if or when you do have to go for an ablation, you'll be in much better condition to bounce back quickly and more permanently. Ablations don't correct nutritional deficiencies. If that time comes, I would strongly recommend seeing Dr. Natale.

Happy reading. When you come up for air, we can all help guide you to information so don't hesitate to ask for more details after you've begin your reading here. Many people have been helped significantly by lifestyle changes and normalizing nutritional requirements.

Jackie

Que,

48% burden is way high. The longer this continues, the more electrical and physical remodeling will occur. Exercising with afib (in my opinion) puts unneeded extra stress on the system. You will be a "complex" case for ablation. In your situation, I'd make the soonest appointment with Dr. Natale in San Francisco for an ablation. You are young. Go NOW!

George

Hi Que,

Welcome to the forum, there is a tremendous wealth of information here to help you discover a real light of understanding that will help you through the forest of this daunting and lousy condition to greener pastures once more.

As Anti-AFIB said above please adopt dedicated repletion of key cardiac electrolytes such as magnesium and potassium and other supporting nutrients and dietary changes to help support your heart and potentially help slow the progression which seems well underway already.

Go here to The Strategy and digest it from stem to stern and adopt this protocol as much as you can. It is true that once you are more or less in persistent AFIB the odds of this protocol and other important life style risk factor modifications have in putting the genie fully back in the bottle are not high, it is nevertheless a very important first big step in the right direction and can very much help support a healthier atrial substrate over time as well as improve overall health ... Often helping too in supporting an expert persistent AFIB ablation with the right EP who is imminently experienced in successfully ablating such cases.

Which brings me to your next best parallel course of action to begin while you are starting The a Strategy and reducing other risk factors and you seem to know already what that next step is right in your own back yard and that is setting up a consult with Dr Natale at CPMC.

He is the pre-imminent persistent AFIB Ablationist in the US and indeed to world with the greatest amount I shear experience in successful restoring NSR over a typically one to two procedure process.

Your Stanford EP sounds like a good doc though his take on ablating so called 'asymptomatic' AFIB is a common viewpoint adopted by many EPs, most of whom haven't had a lot of luck with persistent cases and just figure, 'if it's not really bothering you we'll just keep you in Rate control drugs to help minimize the risk of tachycardia enduced cardiomyopathy for life as then at least I won't take the risk that I might make you moe able to feel you heartbeat in and AFIB I don't feel very confident in eliminating'.

That us basically what that old school rule of thumb states and I agree 100% that you don't want an EP who feels that way, and by definition does not have a lot of experience is ablating such cases with very high success rates, to attempt to do such a case.

Recent studies by Natale's large AFIB research group have strongly called into question the long term wisdom of following that approach... Especially for younger folks like you.

And before I forget,please click the 'PM' private message acronym link at the top level of each post here and send me your email address and cell phone if you wish and Ill send you a copy of last summers AFIB Report newsletter in which I give a firsthand account of witnessing Dr Natale successfully ablate a close friend of mine who was 64 and very athletic and in good shape but had a very enlarged 53mm diameter left atrium... Much bigger than your 'mildly diameter LA' and which by itself would cause 95% of ablation EPs to deny him an ablation until he could reduce the size which is not going to happen while still in persistent AF.

In any event ,not only did Dr Natsle restore this mans NSR in under an hour of actual ablation time, but the patient is still in perfect NSR now 10 months later and counting!

This after his local cardio in Hawaii also had said he was not a candidate for ablation as well.

Plus I object to the term 'asymptomatic' AFIB, you have clearly discribed a number of obvious direct symptoms from your AFIB that you simply do not recognize as an irregular heart beat generally due to an AV node condition issue or in some cases, which apparently is not your main reason for not feeling your arrhythmia, simply having an AFaiB rate well below 100bpm can cause a person not to notice the irregular nature.

But neither of those cases spare you from all consequences of having AFIB. There will still be some progressive enlargement of LA over time, typically ongoing fibrosis and cardiac remodeling over time making your further entrenched in a deeper permanent AFIB and also the evert present stroke risk which is not 100% eliminated by blood thinners.. especially over the long ten in a your person where the yearly odds of having an embolic or bleeding event while on bloodvthinners really starts to catch up to a person your age now once you are forced to start them when a 3to 5 percentage annual risk becomes on 80% risk over the long haul.

Plus we have learned in recent years that ongoing untreated AFIB is the single biggest cause of micro emboli leading to Silent Cerebral Ischemia ,(SCI) which though supposedly asymptotic when looking at each individual tiny lesion in the brain nevertheless have shown a very strong association with early onset dementia and Alzheimer's in long term AFibbers.

This ramifications of this new discovery over the past 5 years or so has not fully seeped into the awareness and decision making of those EP's and Cardios who still feel if a person does not complain of sny irregular heart beat then why should we do an ablation and we will just maintain them on blood thinners and rate drugs and they won't be complaining to us .' .... certainly they won't hear aout it or make the connection too when those patient duffle off to the nursing home with early onset dementia either .... 'It didn't happen on my watch' used to be the common refrain a doc could use when discovering his long term AFIB patient now as Alzheimer's, but no longer can they plead ignorance with the watershed of new studies conforming these link over the past few years from around the world at major AFIB research centers
AFIB is far from the mostly benign condition it was once thought to be.

Anyway, Que, bottom line while jumping on The Strategy and dietary changes as needed, please do your self a big favor in a case like yours and go have a consult with Dr Natale, especially when you have the great good fortune of having him practice one week per month in your own backyard!!

I'm sure you will hear many others here second that recommendation. And at least then, after a consult with Dr Natale you will know the real facts of what is truly possible for a young guy such as yourself and a case like yours.

Cheers!
Shannon

Hi Que,

Like yourself I live in the bay area and was diagnosed with asymptomatic, paroxysmal af about 2.5 years ago during a physical exam. My CHA2DS2-VASc-score was 0 and I was prescribed diltiazem and aspirin.

About 10 months after my diagnosis I saw Dr Natale who did a 7 day Holter and found that I had a 30% burden rate with the longest episode of 12 hours; based on these results he recommended anticoagulation. I should also mention that the Holter showed my average hr while in afib was 65 with a low of 49 and a high of 142. I am a long time runner and my pre afib hr was 50.

Over the subsequent months I began to experience more fatigue and my afib burden increased. It was clear to me that my afib was progressing and so I saw Dr Natale again. He gave me a choice between antiarrhythmic drugs or ablation. To me this was an easy decision as my research had shown that Dr Natale’s 10 year success rate is far greater than drugs. I had an ablation about 11 months ago and have been afib free since. I also had no fibrosis. However, the best part for me is that I no longer have the anxiety associated with afib.

I should also mention that I have always been very healthy and have followed a 90% vegan for the past 16 years. I found this site shortly after being diagnosed and followed those parts of the strategy that I had not already been following.

I would recommend that you get a second opinion from Dr Natale. I spoke with several leading ep’s in the bay area and California , presented each with the same data and test results and was given different opinions regarding treatment and anticoagulation strategies.

The other benefit of meeting with Dr Natale is that in my opinion you will never meet a more caring, compassionate, humble person. Seeing him is always an uplifting experience for me and I feel very fortunate to have met him although I wish it was under different circumstances.

Allan

Thanks everyone for your advice.

I will look into the supplements and find a way to have the Exatest. I am also in contact with Dr. Natale's office here in SF and am trying to get an appointment in April.

Allan thanks for sharing your experience with Dr. Natale. Is it true that he has a 10 year success rate? What would someone do after 10 years? As I'm 45 now I am planning to be around for a while.

Shannon, I have PM'd you and look forward to speaking soon.

The Anti-Afib, the Zio was on for 2 weeks each time I've worn it, which is a total of 3 now. I would say that my HR seems often to be below 100 when in A, but there are times when it will spike up between 100 and 200. During those spikes the avergage tends to between 100 and 150 and mostly occurs during physical exertion. I kept an activity journal and it seems that most instances of the very high HR spikes match when I was either cycling or running.

Here's my most recent data from the Zio in August. Data from last 2 weeks due any day now.

Days 1 & 2: <1% AF, HR in 50-70 range mostly
Days 3 & 4: 92% AF (in AF for about 59 hours), HR in 80-10 range mostly with a few spikes between 150-200 HR
Days 5 & 6: 35% AF, HR in 70-80 range mostly with a few spikes to 100-150 HR
Days 7 & 8: 2% AF, HR in 50-70 range mostly
Days 9 & 10: 100% AF (in AF for about 62 hours), HR in 70-100 range mostly with a few spikes to 120 HR
Days 11 & 12: 24% AF, HR in 50-80 range mostly with a few spikes to 150 HR
Days 13 & 14: 58% AF, HR in 50-70 range when not in AF then 70-100 when in AF with a few spikes to 130-150 HR

Que



Edited 1 time(s). Last edit at 03/18/2015 08:30PM by Que.

Que:

Sounds like when under exertion, your AF HR spikes, and your ventricles do not not have time to fill with blood, before the contraction occurs. When in AF, the Atria, do not work as normal, to push blood into the Ventricles. Sounds also like you could talk to your Dr. about adding possibly a Beta-Blocker like Bystolic (non-drowsy cardio-selective) that will help you with rate control under exertion.

Your AFIB burden is high, which is why the others mentioned an Ablation, but I was worse than you in Persistent AFIB for 3 years, requiring Cardioversion to get into NSR, and I successfully reserved out of the condition, by following the Natural remedies discussed on this site, that primarily being Mg supplementation. I would at least give the Mg a try.

Que,

Might as well supplement magnesium to bowel tolerance - ramp up slowly. You can see if it helps. Don't put off the Natale consult in the mean time. It'll take a while to play out. You can always postpone an ablation if you see a lot of benefit from mag. My best friend from childhood was in your situation. Got to afib via chronic fitness. Mag reduced his burden but didn't reduce it enough, after supplementing for 8 months, he just had a Natale ablation on March 5. He couldn't be happier. It was also a complex ablation.

"Is it true that he has a 10 year success rate?"

10 years is a very long time in the ablation world. That was the dark ages compared to today. Natale ablations were very good then and are even better today. As one of our posters, who had an ablation in Bordeaux in '03 (they are arguably 2nd to Natale in the world as a team), was told when she asked about the long term. They said, "you are the long term." She ~77 and happily still in NSR.

Most would advise you to do all you can to minimize triggers (see the thread just below on exercise) <[www.afibbers.org] , electrolyte supplementation, proper diet & etc. These will help make your remaining life afib free and the ablation last.

George

Hi Everyone,

I actually was able to schedule my consult with Dr. Natale today for the beginning of April. As I was told by the office manager if I am a candidate for an ablation it would probably take 1-2 months from then to fit into his schedule. That gives me a few months to try the supplements and lifestyle changes. I will look into that next. I also have questions about alcohol and caffeine. I had cut back to 1 glass/cup of each per day, but am now wondering if abstention would be the best? A glass of wine is a nice thing when going out with friends and a cup of green tea is a healthy boost.

Thanks Anti-Fib for the Beta Blocker suggestion. I will talk to my EP about that. Do the BB have major side effects?

Que

Oh, I'm starting to get the impression that Dr. Natale really is one of the best EPs out there, especially for an abalation. Is that correct?

Q

Hi Everyone,

Can anyone please try to simply explain what the supplement strategy is. I read The Strategy document and it is rather dense. Looking at the supplement page I see the Essential Trio:

1) Magnesium Chelate (glycinate): One or two 100 mg capsules three times a day with meals
2) Potassium Gluconate: 500 mg ( 1 tsp powder in juice - or 5 tablets) three times a day
3) Taurine 1000 mg (Jarrow): One 1000 mg capsule three times a day

Is this a good summary?

Thanks,
Que

Que: BB's side effects vary. I use Bystolic which is what they call cardio-selective, meaning that the drug tends to target the receptors of the Heart, and so you less side effects like drowsiness, or legarthy that most BB's produce.

Also looking at your posting about your Zio-patch, I don't think your HR is high long enough to warrant major concern for Heart muscle weakening (tachycardia mediated cardiomyopathy). The Ep's had told me that someone would have to have sustained Tachyardia of over 100 for over 24 hours to create Myopathy, You don't say how long the spikes are, but a few short bouts would be comparable to normal rates if you were subjecting yourself to exercise.



Edited 1 time(s). Last edit at 03/19/2015 09:05AM by The Anti-Fib.

"Oh, I'm starting to get the impression that Dr. Natale really is one of the best EPs out there, especially for an abalation. Is that correct? "

In many of our opinions, yes! He is THE best worldwide.

Que,
CPMC is a great hospital in my opinion. I've had three procedures there, everyone is very professional and the care is very good. I haven't had a less than good experience with anything there. I think it is unlikely there is a better EP than Dr. Natale, he may have a peer somewhere but I don't know how you could improve on the experience of being treated by Dr. Natale.
My first bout of afib was in 1995 when I was 46. I didn't have my first ablation until 2012. It wasn't a burden much in the early years, I converted then went back to my life. I straightened out my diet and exercise (did a lot of walking, ditched the sugar and high carbs). Until 2010, when trying to recover from my sister dying suddenly of a heart attack, my afib came back with a vengence. I tried everything, the vitamin and supplement regimins here and other places. Things seemed to work for awhile, then not. My stomach was upset often by the amino acid supplements I tried. I even tried high doses of D3, then iodine supplements. I read "keep trying until you find what works for you!". No go. With an infinite number of combinations and starting from complete ignorance finding the right combination in one lifetime seems impossible. You are a study group of one and no conclusions can be drawn. After a while I thought "if someone says there are fifty ways to skin a cat, you can conclude they have no idea of the best way to skin a cat". I kept reading on the forums about Dr. Natale did some research and found he practices in San Francisco one week out of the month. I called and I'm so glad I did. There will undoubtably be breakthroughs sometime in the future, near or far, which will obviate the need for ablations. They will probably have to do with diet and lifestyle and new supplements or drugs. All of the mechanisms which are poorly understood now will be clear someday. But for now an ablation by a very skilled doctor can give you a quality of life you may otherwise not be able to achieve.

Thanks Mike and George and everyone else.

Couple of more questions.

1) Can someone please share the studies that point out the risk of Micro Cerebral Ischemia?
2) What about antiarrythmic drugs to get you back in NSR?
3) Is there a recommendation for very moderate caffeine and alcohol?

Hi Que,

First Question:
While I was in Austin at the end of February getting my ablation done by Dr. Natale, I volunteered to be part of a research study being done by him involving studying Micro Cerebral Ischemia. As a long term, persistent afibber, in constant afib for 3 years, I am a good research candidate for this study. During those 3 years, I was not on prescription blood thinners (warfarin) for the entire period. There is a possibility I have had some of these micro strokes. Presently, and for the last couple of years, I have had a terrible time remembering names. I am now 69 yrs old. I do not know if this problem is age related or micro stroke related.
While in Austin, I was given a CT scan as part of this research study. I look forward to getting an update in the future on the results of the scan and knowing how the research is going forward.

Second Question:
In the last 10 years I have been on 2 antiarrhythmic drugs. The first was amiodarone, known as one of the most effective and risky. I had no problems with it for the 8 yrs. I took it. My dose went from 100 mg to 150 mg to 200 mg finally in the last few years of taking it. Over time, dosage needed to be increased to maintain nsr. It was also necessary to do regular diagnostic tests to ensure no damage was being done to my eyes, lungs or thyroid. I decided to get off it and seek an ablation in 2013. The chances of side effects and decreasing effectiveness increase over time.
The second antiarrhythmic drug I took was sotalol for about 3 months from Dec.'14 to Feb. '15, while waiting for my ablation with Dr. Natale. This drug works, I had nsr while on it. I did not like the side effects I had with it. It sapped my energy levels and slowed my heart rate into the 50's. I simply did not feel so good on it. I took 120 mg. at 12 hour intervals (240 mg/day).

Third Question:
In the early days of my afib, beginning 13 yrs. ago, both alcohol and caffeine were triggers for my afib. After starting amiodarone, they still were, so I stopped them. Later, while still on amiodarone, I was able to have one cup of regular black tea per day, but was not able to add any alcohol whatsoever, due to its triggering afib.
Now, after my recent ablation on Feb. 26th, I have been having one cup of black tea in the morning, with no extra ectopics noted. I am probably off the alcohol for the foreseeable future, as I see no benefit. I have had enough alcohol for this lifetime, I think.

I hope my experiences help you.

JohnB

Que - Posts from afibbers since we began this forum indicate that coffee or tea containing caffeine can be a trigger. Some people find that they can drink regular coffee as long as it is organic because coffee beans are among the most highly pesticided commodities and they react to that. Some learn that the caffeine is too stimulating so black tea is out as well; green tea has some caffeine and may be tolerated.

Lots of reports on the tolerance for alcohol and afib. Know that alcohol depletes magnesium and also is toxic (kills) heart cells. Electrophysiologists say to eliminate alcohol. Other afibbers report they can tolerate some amounts of beer and organic wine (again, eliminating the chemical residues like sprays from the vineyards), and a lower alcohol content than hard liquor.

What makes sense? Abstaining and gaining NSR?

Jackie

Que,

I was diagnosed with Afib on 1/14/14. Ablation by Natale on 1/27/15. NSR since ablation.

After diagnosis, electrical cardioversion did NOT work. Started with Tikosyn for anti-arrhythmic med. Still had breakthrough high heart rates during exercise, which often initiated Afib after several minutes. I kept exercising with the permission of my cardiologist for many months this way, even though today, I believe it was the absolute wrong thing for me to do. Exercise initiated Afib for me, it never stopped it as some others have reported.

Four months after diagnosis, Flecainide was was initiated and Tikosyn was stopped. It did not keep me in NSR as much as the Tikosyn. Still had many breakthroughs, include one on the first holter monitor for 24 hours that showed HR up to 239 during exercise..........I kept exercising for a total of 75 minutes that day. New doctor freaked out upon seeing that and immediately referred me to local E/P for ablation. He increased Flecainide and then added Metoprolol to keep heart rate lower. It worked for a little while and didn't let heart rate go that high. It soon became less effective and higher dosage was added for both Flec and Meto. Echo in May showed reduced ejection fraction to 51% and echo in November showed further reduced to 46%.. New local E/P said I needed an ablation. I had simultaneously been corresponding with Natale's office to schedule ablation.

I tried every suggestion for supplementation, diet, and triggers as scientifically as I could. Nothing improved it. It just kept getting worse and worse with a higher burden until the end when I was almost always in Afib.

I suggest you stop your exercise program until you get your afib under control, unless you are like some here who found it would stop their afib. If I could do it over again, I would not have exercised as vigorously as I did in afib. I think it contributed to my continuing reduction of ejection fraction.

As soon as I was diagnosed, I gave up all common triggers.....alcohol, coffee, chocolate, etc. I have returned to drinking decaf coffee just for pleasure, but again, I don't think it was ever a trigger for me. I gave up alcohol and never returned to it..........just because,.......I could drink a little without a problem, I'm sure..........but why take the chance.

Anyway, good luck with your decision. As others have stated, Natale and his staff are fantastic.

Best wishes.

Ken

Hi All,

I had my Zio and echo and found that I now have progressed to persistent AF and now have an enlarged LA. I saw Dr. Natale and we agreed to go forward with an ablation. It will occur in about 3 weeks. I was also put on NOACs and told that I should have been on them for a while.

Que