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!