OK, I didn't want to hijack the topic from another poster about changes in Afib........so I'm creating my own topic.

Greetings to all,

This is my first post here at Afibbers....nice forum you guys/gals have.

First a little background,.....then a couple of questions to GeorgeN about the app he described in this posting.

I was diagnosed with Afib in January 2014.....52 yoa, w/m, in good health........no hypertension, no diabetes, not clinically obese,..Afib was a complete surprise to me......asymptomatic. I was in the hospital for a minor ulnar nerve decompression when Afib was discovered. Immediate TEE in hospital followed by unsuccessful electric cardioversion. Three weeks later, in hospital and loaded with Tikosyn. It kept me in sinus rhythm but during exercise heart rate would still go to 190-210 range. Discussed with cardiologist. Subsequent treadmill exam showed me in SR to begin with but several minutes later Afib began to rear its ugly head---in and out. At 7:30 they made me stop because HR went to 220. I was a little winded but still felt fine. Throughout all of my exercise I have felt fine........yes, I get winded when I exercise strenuously, but isn't that normally the way it works?

I went to a second cardiologist for another opinion in May 2014. She stopped the Tikosyn and put me on Flecanide and gave me a 24 hour holter monitor. I went home and exercised for 90 minutes of cardio. Results showed HR went to 239 When she got the results it must have scared her badly.......she immediately referred me to her colleague---an Electrophysiologist----for an ablation. I saw my first E/P in June of 2014. He added 25mg. of Metoprolol ER to control the high heart rates during exercise. We scheduled a 14 day heart monitor. It showed 14% Afib but 56% Brady. During that monitoring period, they kept calling me b/c HR was at or near 30 bpm and would alert them. I believe the Brady is from the meds. My resting HR before Afib was always around 60.

Since I've primarily been asymptomatic, we decided to watch it for a few months. That's what he said he would tell his brother to do if his brother were in my identical condition. I initially had good success with this flec/meto combination. I've always monitored my HR at the gym with a chest strap HR monitor, but I never had any way to confirm Afib. However, I suspected whenever I had spikes----sometimes it would stay much higher than normal----that those spikes were from Afib. I would usually convert later in the day but lately it seems conversion wouldn't take place until sometime during sleep. Oh, since I said "sleep", I have had mild sleep apnea for about 7 or 8 years. Initially I went to the doc just b/c I was snoring and it aggravated my wife. Admittedly, I did not wear the CPAP regularly prior to the Afib diagnosis in January, but I have not missed a night since.

About three weeks ago, I saw the AliveCor for Iphone 4 was being cleared out at $59.....what a deal. I had an old Iphone 4 laying around so I thought I would try it. I've been using it for a couple of weeks. Just slightly less than 50% of my AliveCor checks show Afib. Admittedly, when I take one which shows Afib, I usually take more in a near timeframe, so that part is skewed.

I went back to the E/P this past Friday, 10/24. He again offered a PVI ablation but basically left it up to me, depending on how I actually feel. In the end, I asked for an increase in both meds because of recent spikes during exercise, more so than when I started these meds. It appears to me that the Afib frequency/burden has increased of late.......we increased flecainide from 100mg twice daily to 150mg, twice daily. We also increased metoprolol er from 25mg once per day to 25mg twice per day.

Most of the time I feel great. Sometimes I feel a little short of breath and sometimes a little lightheaded when I stand up but those occasions are extremely infrequent. I think the lightheadedness is from the meds lowering my blood pressure. It was 80/50 at a physician's office not long after I began the metoprolol---checked twice by nurse and triple checked by doctor who asked me how I felt---I said I felt great. My BP usually averages around 100/60 most times.

I feel like I may be beginning to develop symptoms, but I'm really not sure. I exercise at the gym, cardio/weights and play tennis. Yes, I get winded but again, I think no less than the average 52 year old man.

Anyway......sorry for the rant.......anyone can feel free to comment on anything they want.......I see you are all a great bunch of caring people.

Questions are as follows:

GeorgeN----You talk about the HRV Logger app......can you elaborate what you use this for?
I downloaded the stuff on the page but it was all MS Excel spreadsheets. Do you get something else in the app?
I know it is only $3.99...no biggie, but if I don't have a use for it, I don't want to waste the money.
Could you possibly post a screen shot here of any graphical analysis you get for the r-r timeframe or email it to me?
I actually recently bought a Polar H7 and have been using it with my Iphone 5S and Digifit app. It shows a graph of the HR bpm of the entire session, including spikes. The dashboard shows average HR, Max HR and some other stuff. I'm not saying it is the greatest......it's just what I started with months ago.

I really like the AliveCor device. I showed it to the E/P doc Friday and he was already familiar with it. He gave it his endorsement. After reading your comments, I've got to try the hand/knee thing......I've only used hands up to this point.

Some of you might ask why I haven't had the ablation.......well, I'm just trying to educate myself. Most of the stuff I've read from the Heart Rhythm Society recommendations concern quality of life issue for people having terrible symptoms. Again, up until recently, I've been completely asymptomatic........and I'm not sure I can blame these symptoms on the Afib.......I'm more prone to blame it on the flecainide and metoprolol. I've never felt my heart racing or pounding like it was coming out of my chest. Additionally, I really don't want all of the radiation/flouroscopy time if it isn't needed or helpful.

If anyone has had the surgery option in lieu of the catheter option, feel free to comment. I'm still learning....

I've read the many comments about Dr. Natale in Austin, TX. Unfortunately, my Florida HMO won't reach that far. I have open enrollment at work and can change to Blue Cross/Blue Shield this month, but out of network coverage is only 60%. Leaving me on the hook for 40% would be quite a financial burden. Can anyone tell me how much an ablation with Dr. Natale costs? I don't expect an exact number.........please just give you best estimate. If you actually had one and received the bills, please tell me what you remember.......not just his fees but the total package.....all medical personnel and hospital fees. I'm guessing 50k - 100k?????

Oh boy, again, sorry for the long rant.......if you have to apologize a second time it must really be long.

Thanks for all who take time to read and respond.

Best wishes.

Ken

Hi Ken,

Since you are in Florida, you might see if your HMO would do Sergio Pinski at the Cleveland Clinic in Weston. A number of posters in past years have had great results. Pinski trained under Natale. I referred my cousin to him in 07 and Pinski did a great job for him. Here is a search for Pinski here: <[www.afibbers.org]

About the HRV logger. The heart rate seems to be each second. This is not what I want. I want R to R time. In the app, once you've stopped a recording and stored it on the phone, you can go to the recording and pull up RR beat length. Here you can use your fingers to "spread out" the screen and look at single beats & also scroll forward and backward in time. During recording, it all gets compressed, so you have to stop & save to be able to manipulate the graph. The author really knows his stuff on HRV.

I'm (fortunately) not in afib often and don't have an afib episode saved on my phone. I think I have the exported RR file, if you care. You can look at it and graph in Excel. I put the data into a Polar HRM file to display in their software, which is great form my use. You can do just about the same thing in the App, just is not as nice on the small screen. I've only caught/had one afib episode in the last year, since I've had the App. The RR variability is normally unmistakeable when you look at it. When looking for PAC's or PVC's, I'm looking for one beat anomalies. If you really want a screen shot, PM me your email and I'll send to you.

George

Hi Ken, when I read your post and then read it a second time, the one thing that stands out is what seems to be common among many afibbers (me at one time). I thought ...why doesn't this guy just slow up on his exercise ?? If you stop the really strenuous exercise or at least limit your time to a 1/2 hour of moderate exercise most days, you may get some extra time on this before you need a procedure. If it were me, I would cut out any exercise that got me into afib until I either got it more under control or had a procedure. Even after a procedure, I would never go back doing what probably got me there in the first place.


Also, Do you take any supplements ? Many on this board have been able to get benefit from them.

Just my opinion...ronH



Edited 1 time(s). Last edit at 10/27/2014 10:15AM by ron.

+1 for the supplements, the iodine protocol being the major one, as it is known to have cured afib.

Welcome Ken and thanks for your detailed report. You definitely should consult with Sergio Pinski just so you have that contact in place should you need it quickly. It's extremely important to choose the best possible EP available to you to ensure a safe and successful ablation.

Beyond that, I totally agree that if it's at all possible to adjust your lifestyle, dietary and environmental factors to support reversing your AF trend, in the long haul, you'll be much healthier and in a better overall status should you eventually need the ablation....and if not... Great - you'll join many others who have avoided ablation.

Quite often, as we age, new trigger areas develop that take us out of the atrial fibrillation mode and into atrial-flutter which often doesn't respond in a lasting way to either drugs or electrocardioversion. In the interim, definitely cut back on exercise and also assess your intake of critical electrolytes that support proper electrical conduction.... ie, magnesium and potassium... but also assess those electrolytes that dominate over magnesium and potassium... calcium and sodium. Imbalances in the ratios of Mg to Ca and K to Na are often found to set the stage for arrhytymia. It's difficult to get all the magnesium you need from diet and supplementing to bowel tolerance levels is the initial first stage...followed closely by increasing potassium where needed. Ideally, you would have the Exatest that measures the intracellular levels of all electrolytes and reports the ratios as well. See www.exatest.com.

A dietary assessment of your food intake would also be an important beginning to learn if you are 'eating clean' or eating from restaurant/fast food options that are loaded with sodium, preservatives, taste enhancers/chemicals and sugar or chemical/artificial sweeteners and alcoholic beverages that tend to cause heart irritability or electrical conduction interferences. Along with that, it's often found in those who have stomach or gut (GI) issues or a sensitivity to wheat and/or gluten proteins to be contributory as we age. While your age of 52 is still young, if you have food sensitivity or digestive issues, then your body has been under 'siege' for a considerable number of years and around 40-50 is when the symptoms begin to surface.

Silent Inflammation is known to cause Afib and comes from a variety of sources and contributes to one of the most significant concerns for afibbers who have long duration events... thick, sticky blood and the risk of clotting. If you do a search on those words and also "hyperviscosity", you'll find numerous posts on this important topic. Pay attention to this immediately.

We can help guide you to various assessments if that is of interest.

Best to you,
Jackie

Since your asymptomatic and converting on your own in less than 48 hours, it is not at all necessary or even advisable to get an Ablation. EP Doctors tend to be busy and don't take the time to connect the dots and treat patients specifically.

You have ample time to try the supplements, Mg in particular.

You have time to experiment with your drug regimen.

You have time to use "trigger avoidance".

Flecainide is known to be "use-dependent", meaning that the higher your HR (exercise) the more effective the drug.
That is why you need to take a beta-blocker with it.

Initially sounds like you took to high a dose of Metropolol, as it caused the Bradycardia.

Have you thought about a Cardio-Selective Beta-Blocker like Bystolic? Cardio-Selective BB's target the Heart, without
causing the sedation of normal BB's. I think this type of Drug is better if your exercising, if it will work for you.

It sounds surprising that you can have that high of HR's and be "asymptomatic" although from what I gather, that is during exercise.

Pay attention to the acute demands on your Heart, what I mean is that most of the time, it's the acute increase or decrease in Cardiac load that causes IR HR's. Steady demand on the Heart is better than interval training. Like running steady, better than sprinting and stopping, etc. Same thing with weight training. Too much demand all at once, followed by nothing is more likely to produce arrythmia. It's the acute variation in cardiac-load that tends to cause the issues.

Anti-fib,

"Pay attention to the acute demands on your Heart, what I mean is that most of the time, it's the acute increase or decrease in Cardiac load that causes IR HR's. Steady demand on the Heart is better than interval training. Like running steady, better than sprinting and stopping, etc. Same thing with weight training. Too much demand all at once, followed by nothing is more likely to produce arrythmia. It's the acute variation in cardiac-load that tends to cause the issues. "

This was not the issue in my case. It was chronic steady endurance training that led to (vagal) afib initially. I could do all the heavy weight training or HIIT I wanted without issue. I do see your point, in an acute sense with exercise as an immediate trigger. This is more likely for those with sympathetic triggers.

My first event was several days after a high (>14,000') altitude training run. This pattern has continued if I do very hard endurance activities. I now mostly avoid those kinds of triggers. My training is limited to super slow strength training to failure along with HIIT (mostly Tabatas). These intense activities have never been a trigger for me, nor do I see anything disturbing (pac's or pvc's) while recording these trainings on a beat-to-beat heart rate monitor.

George

Hi Ken,

I would strongly advice you NOT to get an ablation at this time with anyone other than a true expert that specializes in persistent AFIB. Its great that you are relatively young and healthy and fit ..all those things are in your favor, but while there may well be a very good reason for you to get an ablation now, you want to be particularly discriminating on who you go to.

A few questions for you as well:

I assumed you have had an echocardiogram? If so, what was your left atrial diameter? Your case including the bradycardia while in AFIB sounds exactly like a good friend of mine that I connected with Dr. Natale for a challenging ablation as he has an enlarged LA of 53mm diameter, was similarly discovered as you were when going in for another medical procedure (a colonoscopy) and failed his cardioversion attempt in less than half a day.

The vast majority of EPs will not even touch someone with an enlarged LA above 50mm diameter.

My friend also had bradycardic AFIB as well, ranging from a rate of from high normal of 75bpm down to 35bpm and occasionally with very fast runs during exercise. And during his ablation, which I witnessed and wrote about in this last June/July issue of The AFIB Report, he was entirely in deep bradycardia until Dr Natale was able to convert him to NSR after only 45 minutes of ablation work ( including all the catcher threading) and he has remained perfect NSR ever since, going on 6 months now as of this coming Monday.

A typical EP ablationist who mostly just does PVI-only type ablations, or just dabbles with some occasional persistent cases, will be sorely over his or her head in trying to achieve anywhere near such results for people in this AFIB category.

Send me a PM with your address and Ill see that you get a copy of that issue, as I think you would find this case study very interesting and relevant to your situation Ken.

Hopefully, your LA diameter is in a smaller range under 45 to 47mm diameter tops preferably, but even if not, which could be the case had you been in persistent AFIB for quite some time and your LA has expanded as a result, you can still get AFIB more or less out of your life entirely so long as you choose the right ablationist, regardless of insurance issues.

For people with no insurance who wisely wish to have Dr Natale take charge of their ablation and heart, a full AFIB ablation with the hospital stay, diagnostic tests and the entire procedure including all doctors, technicians and nurses fees and all equipment used at St Davids Medical Center in Austin Texas ... in short the whole nine yards ... is an even $40,000.

For an insurance case, the amount billed to the insurance company will be much higher , just due to the crazy game that is played in US Health care where the insurance carriers chop off large amounts of whatever is billed and so the providers add on what added charges they need to wind up with the roughly $40,000 at the end of the day that is their total charge needed to keep the doors open, after the insurance tango is all settled out. A crazy financial system the only seems to guarantee escalating cost increases.

That 60/40 split you would have with going to Blue Cross now during open enrollment may not be applied as you assume for the actual AFIB ablation bill. This is something to discuss with St Davids as you might be pleasantly surprised with what is possible with the Blue Cross plan you are looking at, when they look at the details of your prospective policy.

Your very high HR under exercise is something my friend also experienced at times. He was not taking a beta blocker at the time.

In any event, during his ablation some of the support stay and who were watching my friends deep Bradycardia during the ablation were commenting on how low his HR was an had to make adjustments to hemodynamic flow and suggested he would almost surely need a pacemaker too.

When Dr Natale had finished the main phase of the ablation, and had just started the isoproterenol challenge portion of the ablation which is a 20 minute period where isoproterenol (Isuprel) is infused at 20mcg/min infusion for the whole duration to uncover any so far unseen or reconnected triggers after NSR has been achieved during the ablation, Dr N came back into control booth which is right at the head of the ablation table behind a large glass window and which he was watching carefully the Electrogram readings under the Isuprel challenge I asked him about my friends bradycardia and if he felt he would need a pacemaker installed at the end of the procedure too.

Dr N said his rate is low enough, but look at the narrow spacing on his electrogram , which indicated he still had good cardiac exercise capacity and that he would not need a pacemaker and would almost certainly remain in a normal range after this procedure. Which is what happened, before they finished pulling the catheters out, 'Tony's' HR was at 65 and chugging right along and he has not had any bradycardia or AFIB/Flutter since.

He has a LINQ 24/7 monitor too that confirms no Brady and no AFIB or flutter at all since June 4 when he had his procedure. Tony (not his real name) is a very fit 64 year old man who has a long history of exercise both endurance and particularly with lifting weights.

Dr Natale warned him strongly to never again lift more than 50 to 75 pounds maximum overhead or with bench presses. He can do lighter reps as much as he wants but the excessive weights and particularly at 100 pounds and over is very bad the heart long term.

Dr Natale told us both there in Tony's hospital room the day after the procedure when he was signing the orders to discharge Tony, that every single owner and long time weight lifter/body builders of several large free weight gym franchises all along the coast of California and a good number of them elsewhere across the country had, so far, required either one or more heart valve replacements, and all of them with marked dilated left atriums and almost all with difficult AFIB as a result.

Joe Weider one of the famous fathers of body building died after multiple valve replacements, Arnold Schwartzenegger has had, I believe he said, two valve jobs as well and he rattled off a list of other well known figures in this sport that have severe cardiac disease, and the vast majority with difficult to treat AFIB as well, as a result of greatly overdoing what, in more moderation, is only a good thing.

Dr Natale said when lifting heavy weights, in particular overhead or above the chest in bench press mode, the ventricles are squeezed tight as if a band were wrapped around them when grunting and pressing hard with heavy weights, but the upper atriums then balloon out, as in taking a regular balloon and wrapping your hands around the lower half and then squeezing it will cause the upper part of the balloon to literally 'balloon' out and stretch in the process. The prolonged result of which are greatly dilated left and right atriums often leading to dysfunctional valves and a strong tendency toward persistent AFIB.

You also need to moderate excessive endurance training as well. We have gobs of evidence now that moderate amounts are healthy, fanatical amounts of long term endurance training are highly risky and dangerous when it comes to AFIB and even arteriosclerotic CVD.

In short, as a persistent afibber (and really smart advice for everyone), you must tailor for yourself a more modest exercise program to balance keeping physically fit with not exacerbating your underlying cardiac condition manifesting as persistent AFIB.

Recent studies out of both Bordeaux and Austin as well as a number of other smaller research centers also confirm that once a person converts to persistent AFIB their best odds of success in the fewest procedures, is to get a highly experienced ablationist to perform an expert persistent AFIB ablation at a top center, sooner rather than later and that waiting, in this case, buys you nothing but a greater chance for a more difficult road ahead.

AFIB cycle lengths were measured and newly persistent Afibbers were then followed after ablation, or just after waiting, and most often those with longer AFCLs from around 150ms compared to shorter AFCLs around 131ms or less , faired much better after a single or at most two ablations, With the longer AFCL above 150ms comes a slower atrial HR moving from the 330bpm atrial rate at around 150 AFCL up to 440bpm at a shorter AFCL of less than 130ms or so. The longer your are in persistent to permanent AFIB typically the shorter the AFCL and when you get in the 130ms AFCL range your odds for being one or even two and done are much less.

You can make the choice to just stay in asymptomatic AFIB, but is it really asymptomatic and is it really the best decision?? Or is it that you just are not much aware of and bothered by your faster HR and so everyone says 'why bother and take the risks of an ablation' ? Having shortness of breath is not asymptomatic, for example. neither is congestive heart failure which can be the end result of unaddressed long term AFIB.

While maintaining a lower HR well below 100bpm in persistent AFIB can help mitigate, to some degree, the chance for heart failure to develop, it still does occur and is a real risk even at lower heart rates, as often does progressive fibrosis within the left and right atriums etc.

In short, many people can get by in so called 'asymptomatic' AFIB for man y years or decades even, but they often don't realize the Faustian bargain they might be making in the process. Most of the stats don't underscore this as they are just looking at is the person still asymptomatic and alive. The quality of that life is another question often not asked in those surveys that give the impression that asymptomatic AFIB and having to staying on a cocktail of AFIB related drugs and such for life is benign.

As a young fit guy like yourself, you might decide you don't want to settle for gradually accepting such limitations long term on your life and activity as well as the added risks on your hearts health.

Sustained NSR is the only way to really reverse some of this kind of damage to some degree and prevent even more of it from gradually accumulating during all the future years we accept AFIB to continue on as is. Keep in mind too, that what is asymptomatic now does not always stay that way and at times can become very symptomatic, and yet if it does when we have procrastinated far too long in getting much better control over the beast, even if this beast seems to be doing its work in mostly silence, we can come to regret not taking action when success might have been much easier to acheive before too much remodeling and too much random wide spread scarring or fibrosis has occurred..

Anyway, food for thought and each person will have to come to their own decisions. But for sure, do NOT go rushing off to an ablation with any ole' EP your local cardio recommended without first doing an exhaustive investigation into just how experienced and successful they are in doing persistent AFIB ablations.

Best wishes,
Shannon

PS. Do send me your email link my Private Message (the PM button at the top of these threads headings) and I'll shoot you a copy of the June/July issue of The AFIB Report ... consider it a free sample with a very pertinent case study for you Ken, and perhaps you might like to subscribe to future issues.

Also Ken, discuss with your doc going on Diltiazem or Verapamil instead of Toprol.
The two calcium channel blockers tend to have a bit less impact on BP, with Verapamil have a bit more BP lowering effect per equivalent dose than Diltiazem but it doesn't seem like you need Lower BP for sure, so perhaps Diltiazem would be a good choice and see how you do with it. It can lower HR a goo deal too without crashing BP when taking a small to modest dose.

With your wide swings to very high AF or Flutter HR have they examined or discussed some possible sinus node dysfunction as well? Worth looking into too, but that could be A psuedo- tachy Brady kind of an effect due to your manifestation of AFIB and those wide HR swings may well thoroughly resolved after you are back in a solid NSR after an expert ablation process, and not just drug enduced NSR with rate control drugs on top.

As Anti-AFIB noted, a low dose of Bystolic cardio-specific beta blocker might be an option too, but you sound like a typical vagal or mixed afibber and even Bystolic has some systemic beta blockage effects and might lower your BP a bit more than you might need.

Best wishes,

Shannon



Edited 1 time(s). Last edit at 10/28/2014 02:24PM by Shannon.

I just returned to this site today and saw the responses from you guys………honestly, after reading them all, it is a bit overwhelming to consider the kindness, compassion and caring you all have for complete strangers, donating your time and efforts to helping others. I can’t thank you all enough for your responses. I will try to respond to all of your responses in the order you posted.

GeorgeN----you and I PM’d the same day as the original post…….thanks for the extra info on your heart monitoring procedures as well as the recommendation of Pinski.

Ron---yes, seems like common sense and I actually considered it early on, but my local cardiologist told me it was ok to continue to exercise……..even after I pointed out 200+ heart rates while exercising. I think he didn’t believe me initially. I convinced him to perform a treadmill test and that’s when he wanted to refer me to an E/P. He then said he thought I might have an accessory pathway but said it was still ok for me to exercise. After getting on the Metoprolol, it seemed to squash the high heart rates. However, months later, I noticed spikes creeping in. If they seemed to persist, I would just stop exercising. I knew it would not be good for my heart to exercise in Afib. However, the dilemma is that I don’t want to stop enjoying life, doing the activities that I enjoy…..if I don’t have to.
Do I take any supplements? Yes, I tell friends I feel like the obese guy watching all the miracle infomercials late at night, ordering them all. I’ve taken fish oil for years. Since Afib, I’ve been taking Natural Calm Magnesium to bowel tolerance. It hasn’t seemed to help or make any difference at all. I added CoQ10, L-Carnitine and D-Ribose to complete Dr. Sinatra’s “Awesome Foursome”. I eat at least one banana per day and generally at least one healthy green salad daily……sometimes two. None of these supplements seemed to have helped. I have a lot of loose stools, probably from the magnesium.
If anyone has any other suggested supplements, I’m willing to try.

William---I have not tried to iodine protocol. I was diagnosed with low thyroid function about 5 years ago. For the first 2-3 years, my doc had me taking kelp. Function continued to decrease so a couple of years ago he put me on Levothroxine 50mcg daily. Would the iodine supplement interfere with this?

Jackie----Thanks for the confirmation on recommending Sergio Pinski. I’ve tried to identify triggers other than exercise at times. I have completely eliminated alcohol since Afib diagnosis in January 2014. I initially eliminated all caffeine for the first several months with no improvement, so I now occasionally have some decaf coffee. It doesn’t appear to have any adverse effect. After getting the AliveCor device a few weeks ago, I had a way of identifying when I was in Afib. I thought I noticed a pattern this week with grains/wheat. I cut it out for a day and was Afib free. I did without wheat the next day too but Afib returned. Sigh. I’m not saying the wheat couldn’t be a factor, but I just believe I probably have multiple triggers…..I eat healthy most of the time. For years, at the recommendation of my primary physician, I have eaten old fashioned oatmeal for breakfast every morning. I generally eat a salad for one of the two remaining meals. However, I’m not a saint. I do enjoy fried chicken wings almost every Wednesday night with friends…..and Friday night is date night with my wife so we typically hit a restaurant.
I don’t eat/drink a lot of dairy. I do get a lot of intermittent bloating……and recently, when I stopped the bread the bloating temporarily seemed to disappear. I had a big sub yesterday for lunch and the bloating has returned some. I had a salad for dinner, consisting of mixed greens, green olives, cucumbers, carrots, tomatoes, and sliced deli turkey. No bread, crackers or croutons. Olive oil and balsamic vinegar for dressing with a little garlic salt for seasoning. I think I’m going to explore this bread/gluten thing more. It is going to be tough giving up bread.
I rarely pick up a salt shaker. I’m just not attracted to lots of salt. I’ve never had a blood pressure problem. The only problem I have now is that it may be too low due to the added Metoprolol and Flecainide.
Yes, if you have additional resources to point me to on inflammation or diet, I will read them. Feel free to share them with me.

Anti-Afib-----Yes, it converts, but it constantly goes back and forth. It is rare that I have a complete day free of Afib….at least according to the AliveCor device I bought a few weeks ago. According to the AliveCor Inisghts Report, I’ve taken 448 ECG’s in the last 26 days and 192 of them were Afib. That’s 42.8%. Again though, as I said in the initial post, when I see one that says Afib, I generally follow up more soon thereafter to confirm, so the Afib percentage could actually be a little lower that what this number reflects. Average heart rate for all of these is 66. The high heart rates of 200+ are gone since adding the Metoprolol. Plus, now if I see my HR spiking during exercise, I know it is Afib and I stop exercising. I can monitor this at the gym b/c of the equipment and my Iphone, but when playing tennis, I’m not going to carry this iphone that needs to be close to the chest strap monitor. I check with the ALiveCor between games sometimes and it is usually Afib. I just keep playing.
To one of your point, I have noticed (and this just happened Tuesday) that I will have some great exercise sessions for my heart rate but as soon as I stop, I get spikes. I actually finished with lying overhead triceps dumbbell extensions Tuesday (after bench press). My heartrate had been great all morning. I went downstairs to check BP and glanced at my Iphone…….it was spiking at 125…..before that, had not been steady, never over 90……which is suppressed b/c of the meds. However, again, this is not a pattern. The spikes sometimes come after steady cardio. My cardio routine starts with 15 min on a bike, 30 min on an elliptical, and 30 min on a treadmill. No sprinting, usually a brisk walk on treadmill at 4.1mph.

GeorgeN---You’ve already helped me…….I’ve come to recognize that we aren’t all the same and our bodies react differently. Your point is well taken.

Shannon----Strong words from you about your opinion……I like your conviction. Yes, I’ve actually had 2 echo’s done. The first was in May after the treadmill test showed exercise induced Afib and my primary physician recommended I get a second opinion. That echo showed a “mildly enlarged” left atrium and I believe the technician told me ejection fraction was 51%, but the cardiologist’s report shows a range of 50-55%. That first echo was on 5/9/14.
After meeting with the E/P on 10/24, I asked for another echo to see if there had been any structural changes. I had that done last Monday, 11/3. During the procedure, the technician showed me the ejection fraction was 46%. At that time, I didn’t realize how bad that was. I met with my local cardiologist (not an E/P) for a previously arranged appointment two days later, on 11/5. I had asked the echo tech to make sure he got it. He had examined it and said he was concerned about the reduced ejection fraction. I told him about the increased flecainide and metoprolol regimen from the E/P. He said that might improve my EF by keeping me out of frequent Afib. I told him I was seeing the E/P again on 12/19. He suggested we should get another echo but that I might be headed for an ablation. I asked if EF could improve and he said yes. He said this was an indication that the heart muscle was getting weaker from being in Afib so much. I asked him if the left atrium had increased and he said yes but only by .1. On the way out, I asked for a copy of the report. I looked at it and it shows left atrium as normal. 6 months ago it was “Mildly enlarged”. I’m confused about this. 5/9/14 echo report in section titled “2D LA” shows “LA Systolic Diameter LX” as “4.0 cm”. In section titled “ML-Mode” it shows “LA Systolic Diameter MM” as “4.5 cm”. 11/3/14 echo report in section titled “2D Measurements/M-mode” shows “LA 3.6 cm”. The reports are formatted a little differently. Is that possible that the left atrium could have reduced in size or is the reading/interpretation of these measurements really that subjective?
I really think the Brady has been introduced by the medications. Just my thoughts. I never had any before taking all of these meds. However, I never watched my heart rate before Afib as intensely as I have since being diagnosed with Afib. It seems that things have continued a downward progression since the initial diagnosis in January 2014. Not that it will make a difference in your comments, but while I have not identified any specific external trigger, my mother has suffered from Afib for the last ten years, since her first open heart surgery in 2004. She had a second open heart surgery in 2009 to repair mitral and tricuspid valves. She got her first pacemaker in 2005, replaced in 2/2013. Unfortunately, on 5/19/13, she threw a clot to her left MCA and it has significantly altered the lives of many of our family members. Her INR in the ER was measured at 1.8 while they were trying to figure out what was going on. She previously functioned at a very high level cognitively. While she has recovered well physically, the significant damage to her brain has left her unable to effectively communicate. She can’t talk or write, even 18 months later. She has some cognitive deficiencies but understands most things most of the time. She has a hard time telling us what she wants. Sometimes she can write a word or two, usually just a key word, like a family member’s name she is wondering about. I moved her in with me at the end of July 2013 and my wife and I are her primary caregivers. I say all of that to say that I believe my Afib is probably genetically related in lieu of external triggers. At least that is what the local cardiologist says…….he never offered much hope that dietary changes/removing common triggers would get rid of my Afib.
With regard to open enrollment, it closed Friday. I wish I had looked at these responses sooner. I could have changed to Blue Cross and further investigated Dr. Pinski at Clevelend Clinic in Weston or even maybe Dr. Natale in Texas. I had actually already called BCBS last week and they said Dr. Natale was a provider but that St. Davids wasn’t…..so I would have had a 40% burden of the hospital bill but only 20% burden for Dr. Natale. I had called Dr. Natale’s office and a nice lady there estimated the total could be as high as 100K for everything. I considered it all and decided to remain with my HMO. I had called my HMO to ask if members were ever allowed to go out of network. The call taker said my primary physician would have to write it up as to why it was “medically necessary” that I seek out of network care and it would be reviewed by their medical panel. I could look into that and I think my primary physician would be willing to do that but I’m not sure how far it would go with the medical review board.
Along with asking the E/P on 10/24 for increased meds and the echo, I also asked him for another 14 day holter monitoring period to see if the Afib burden has increased. He wanted me to wait for two weeks after the meds had been increased so I actually started the new 2 week holter period two nights ago, Friday, 11/7 at 645pm. I played tennis for 3 hours yesterday and according to AliveCor, was in Afib during and then most of the day afterwards, up until bedtime. When I took a break between tennis games yesterday and took an ECG with the AiveCor my HR was spiking in the 150’s at times. That’s very unusual since starting the Metoprolol and to me, it is a clear sign of Afib. I woke up this morning in NSR with a heart rate of 52. That is normally how things go for me. Activity can push me in to Afib, sometimes it goes away before bedtime, sometimes not. I usually convert during the night. I just took another ECG with AliveCor, three hours after waking. Beautiful NSR---p wave, QRS, and t wave…….HR of 52. It’s really crazy how intermittent this is. Don’t get me wrong, I’m thankful for the NSR. I just wish I could figure it out.
Your point is well taken about using the correct E/P. I’m going to try. My plan is to evaluate all new data with my Gainesville, FL, E/P, Dr. William Miles at my next appointment on 12/19/14. I’m not sure that he meets your definition of dabbling in PVI’s or what……..I’ll have to specifically ask him. I’m sure I’ll have other questions as I prepare for my meeting with him. I hope you will continue to be a good resource for me until then.
Your description of your friend’s procedure with Dr. Natale is awesome. Great info too on what happens to the heart during weight lifting. I’m not Joe Weider or Arnold, but I’ve grunted/strained out many bench presses in my life. That may be related…..but since diagnosis, even though I do still sometimes train to failure, my training regimen is nowhere as near as intense as it used to be. Maybe I should give up any intense training………based on the pressure thing you described. I’ve never been a marathoner or fanatical about cardio. I try to do an hour and fifteen minutes between bike, elliptical and treadmill 3 to 5 times per week. But I do work tennis in there a couple of times per week too. Early on after Afib diagnosis when I was doing a little harder cardio every day, I asked myself if I might be working too hard………but I said “Nah, keep going.” Maybe I’m doing a little more than an average 52 year old, but I’m certainly not fanatical like running 100 miles per week. I really don’t want to cut exercise out of my life, but I could try to reduce it. I’ve asked all doctors if it was ok for me to continue to exercise and they all said yes……….
Your advice about tailoring my exercise program is great. It’s just hard to scientifically do that. Until the AliveCor device, I really could not tell when I was in Afib. When I first saw the really high rates at the gym, I asked the local cardiologist about it and he just poo-poo’d it. Not concerned at all. I later sent him an email again documenting it and questioning it and that’s when he scheduled the treadmill test and then became concerned enough to suggest accessory pathway and refer me to local E/P, who said there was not an accessory pathway. Since figuring out that the high spikes in HR are related to Afib, whenever I see it at the gym, I usually stop exercising. Sometimes I will convert back quickly, sometimes not.
Is it really asymptomatic? That’s tough to answer. I never have the racing heart feeling or pounding heart feeling. I sometimes feel a little shortness of breath. I’m not sure if it is the Afib or just my age or the exercising or my imagination. It’s tough to say. Since increasing the meds two weeks ago, I’ve had some light headedness but I think that’s because of the meds, maybe b/c of it lowering my BP.
How can I measure my Afib cycle length you described that might indicate potential success on a single ablation?
I have had the same thoughts you wrote…..am I damaging my heart by not getting an ablation and staying in Afib, even though I am not physically bothered by the Afib? That is why I just asked the Gainesville E/P for increased meds along with new echo and holter monitor period to compare to baseline echo and holter. He said I wasn’t harming myself although he previously gave me the “afib begets afib” line. I really don’t want the fluoroscopy from the ablation if not necessary, but if I knew that the Afib I’m experiencing was harming my heart to a point in the future that ablation would not be possible, I would likely move forward with the ablation. At the last appointment, the Gainesville E/P told me that many people live for decades with Afib, completely asymptomatic. The correct decision has not been clear to me. I know I would rather have an ablation done once as opposed to two or three times. I have a friend who just went through his third ablation---the hybrid approach with the scarring on inside and outside. Is the radiation from the multiple procedures cumulative in this approach or does it dissipate over time between procedures? Is my concern over the radiation legitimate or over done?
I don’t think I would want a reduced lifestyle in exchange for not having an ablation. At the same time, I grimace at the thought of having an ablation or two and returning to Afib in one year, two years, five years, or whenever. If I’m going to be in Afib…….why take the radiation? In the end, it is a risk either way. I thought initially I could correct this with stopping alcohol, caffeine, wearing CPAP, eating better, and exercising. The last ten months have shown me that I can’t. The meds are not working that well in my opinion. From my readings, the success rates of ablations five years out are much different than the success rates most doctors quote at one year out.
Thanks for the suggestion on Diltiazem and Verapamil. I’ll bring it up on 12/19. I really don’t need the BP lowering effects of the metoprolol. I’m not sure about any sinus node dysfunction discussion…is that something that would show up on one of the tests?
I will PM you with my email address after posting this.

TO ALL: Wow, if you made it this far in this lengthy response and are still hanging around, you really are something special. Thanks for taking the time to follow up on my post. I appreciate your care and any comments you care to respond with. Best wishes to you all!

Ken - Since you have indications that gluten/wheat grains seem to provoke some heart activity, you need to commit to avoiding all gluten containing grains for at least 2 months to give it a fair trial. No cheating..as even one minor particle resets the cycle. Getting your system calmed down after years of turmoil takes time and commitment. It's your heart that is symptomatic and getting your attention, but in reality, there are other consequences to ignoring the warnings and continuing to consume gluten. Avoid wheat, rye, barley, oats, triticale and spelt. This is not a hit or miss avoidance... it's totally gluten free.

Wheat is primarily the culprit and it's well known that the protein component called gliaden in those grains can cause numerous reactions in the body that involve silent inflammation as well as stomach and intestinal issues.

You'll have to forgo breaded food items and soups thickened with flour etc.. read labels on packaged foods. It's a commitment but well worth the health benefits you'll gain as a result.

Jackie

Jackie

Thanks for the prompt response. I can do that. If I can immediately cut out alcohol and caffeine, I can cut out bread. Can you recommend a guide/resource/website that you like for the things I need to cut out and the best way to go about it? As you know, you can read anything anywhere and many times the lines get blurred. Since you have so much experience on the matter, please point me to a resource that you like on the topic.

Thanks a bunch.

Ken

Hi Ken,

Im wrapping up my research phase for the next AFIB Report this weekend and will be writing it over the next couple of weeks and as such, don't have time to answer all your questions above by post here or by a written PM or email.

If you send me your cell number and a good time to call in your time zone, I will try to call in the next few days when Im out and about in transit and review some of your questions. I have to go to Chicago for three days next weekend, having been invited to attend an AFIB patient advocacy forum with a handful of other patient advocates across the US hosted by Janssen Pharmaceuticals and, as such, with all this on my plate its easier for me to fit in a phone call than penning a longer answer here on the computer for the next few weeks until after the AFIB Report is out by around the 8th or 9th of December.

Thanks,
Shannon

Ken - I like your style! As a start, go to this link for Tom O'Bryan who is the Gluten Free guru of all times. It can keep you busy for days but he's details all the important info regarding the problems with Gluten.
[www.bulletproofexec.com]
Dr. O'Bryan worked with Cyrex Labs to perfect testing as often some tests are inconclusive and unreliable.

Additionally, there are two books that are very well done that offer important information as well ...

Wheat Belly by Cardiologist, William Davis, MD - [www.wheatbellyblog.com] and

Neurologist, David Perlmutter, MD... his book is Grain Brain [www.drperlmutter.com]

Start here for an easy food list
[www.drperlmutter.com]

You can trust these three resources as reliable.

If it all seems overwhelming, just start with a Paleo type diet which eliminates all grains. Often, in an effort to go gluten free, packaged GF products are loaded with other starchy carbs which aren't healthy choices.

Paleo eating plan: Louis Cordain is the expert here: [thepaleodiet.com]

Good luck with your research. Let me know if I can help more.

Jackie

Thanks Jackie! I like your style too. You've given me plenty to consider. I'll get started on it. I just had a can of tuna with a handful of almonds for lunch.

"the iodine protocol being the major one, as it is known to have cured afib. "

Not for me -worth trying though