Hello Old Friends!! It's been a long time....

Hello to Hans, PC, Jackie, (Fran if she ever came back around), and whoever else we used to study and talk with, in the past. I do hope this finds everyone well! Anyway, I am Rhonda, Richard's wife, and we used to frequent this forum, 9 or 10 yrs. ago, and now I'm finally back with a not-so-good update...but I will add, not completely disillusioned, b/c of the former knowledge gained from this invaluable site. I also want to share something that we've observed, but are not absolutely sure of our findings, and also not sure if we can prove it, but it's a warning to watch for, for anyone else that may see similarities. Also, I want to add that the reason we disappeared was that life got really busy with our business along with raising teenagers, so there was no time left for studies. So, I will give an update of what's been happening for the past 10 years, and bring those up to date, of what originally transpired, then I'll get to the point of this post.

Richard (now age 71) was diagnosed with flutter, in 2000. He did horrible until 2003, due to being "vagal" and being prescribed beta-blockers. He was also prescribed Flecainide, of which he still takes daily. Yes, Flec mostly worked for him, for about 15-17 yrs. (not sure if he was originally started on Flec, and didn't know about taking it on demand, at the time he was first prescribed, b/c we hadn't found this forum). He has since had two flutter ablations by an EP, at the UW hospital...Dr. Pool...and she got rid of his flutter, but then he began to have manageable Afib. As a matter of fact, he had been doing quite well, all this time, except during seasonal changes, esp. in the Fall, when he typically had more bouts. When this happened, he just endured it, while continuing his regimen of Mg. Taurate, and various other vitamins, and he worked through it. He also did a sleep study, and was found to have sleep apnea, and has been on a CPAP machine for about a year, or so. This was from my prodding, b/c he would sometimes stop breathing for upwards of a minute or more. The machine has helped immensely, with his energy and overall well-being. Anyway, all was as well as it could be until...

On Feb 27, 2017, he had his standard EP appt. so he could get his Flec prescription renewed, but this time, he was out of rhythm. If memory serves me, during a standard appt. he had never been out of rhythm. Dr. Pool decided to put a monitor on him, for a week. This was a new monitor, as I've since found, called the Carnation Ambulatory Cardiac Monitor. It sits directly over the heart with two electrode leads. While wearing this monitor, he had the worst week he has had, since his flutter ablations, which I think the last one was around 2005 or 6. Then, last week, Dr. Pool called him back into her office, for an emergency appt. for Monday, March 24, 2017, and then proceeded to tell Richard that his heart had stopped beating for 8 seconds, on 2/28/2017, with one blip at the 5 second mark. He hadn't even had the monitor on, for 24 hrs. Further, he was feeling very uncomfortable on the morning, before his heart stopped, and he had taken off his CPAP mask at around 6am. The incident happened at 8:41am. We didn't think his bad week of Afib was related to the cardiac monitor, at the time, but now we're not sure.

On the March 24th emergency appt. the doc wanted to put the monitor back on, and so at about 5pm, it was, and then the next morning he woke up in Afib, and stayed that way throughout the day. He came home from the office, a little early, feeling very dragged out, and I had the overwhelming feeling that he needed to take the monitor OFF, right away, as I started wondering if it could be the cause of these more frequent and unusual episodes. He called the doctor, and of course they said it couldn't be the monitor. He then converted earlier in the evening, and so he kept it on, but then went out of rhythm AGAIN, right before going to bed, and I said he must take it off, and so he did. In less than 15 mins. he converted to normal sinus rhythm, and then stayed that way. BUT, it gets worse!! The next night, March 26th, he had a mini-stroke, where he lost vision in half of both eyes, but it only lasted about 10 mins. He did NOT tell me this, until the next morning, however, b/c I think he was in denial, just plain scared, or didn't have the wherewithal to let me know. I'm not sure and neither is he. There doesn't seem to be any permanent damage, as we've now found, due to more unfortunate circumstances.

I must digress a little. During the first week of monitoring, in Feb., the doc had prescribed Metoprolol, along with the usual Flec. Richard told her he did not do well on beta-blockers, and she knew this, but she was worried about his faster heart rate, of about 130+bpm, and told him to just bite off a tiny bit, if needed. He didn't get this prescription filled, until 5 days later, of wearing the monitor, and so he may have taken once or twice, on the last two days of monitoring, out of desperation, b/c his heart had been out of rhythm so much that week. Now, to today.

He awakened out of rhythm this morning 3/31, but no monitor this time. He took about half a tablet of Metoprolol Tartrate (about 12.5 mg), along with his typical Flec, and they converted him. He came in the kitchen and told me he felt so much better, and we talked for a moment, and then he said he had to sit down, b/c he was feeling dizzy. I got up and felt his pulse, which was very weak, and then he started falling backwards, and thank goodness I was there to catch him, b/c he went down. His pulse was ranging around 34bpm. I called the ambulance, and he's now in the hospital He is being put on Warfarin, and then from here, I just don't know. We may be calling Dr. Natale, b/c Dr. Pool wants to put him on a Pacemaker, and we do NOT like that idea, at all.

Anyway, we will figure all of that out, but if anyone has good suggestions, I'm all ears or eyes. I do, however, still have a terrible gnawing feeling that this new monitor has played a part in most of this (not today, however, b/c that was the beta-blocker), so I have done my best, to find out how these monitors work. A typical Holter or EKG monitor is held away from the heart, but this new monitor that just came out this year, is adhered right over the heart. What I've found is that between the electrodes and the electronics, there is a magnetic field, produced. I'm wondering if this field could possibly have an effect on the heart, with the exchange or effect of electrons. I just find it very coincidental that the two times he had the monitor on, he had a very bad week, and then it started again, when putting back on, and then also having a mini stroke the next day after removing it. My gut instinct is telling something is not right, and I just want others to be on alert, just in case.

It's late now, and I have to get to bed, so I can be at the hospital in the morning. We will get the MRI and various test results tomorrow, so I will update you. In the meantime, if anyone has any input, I'd be very interested to hear your thoughts. I apologize for our long absence, but am so glad to see familiar names, and to know you are doing such wonderful and important work. Goodnight all, and I look forward to reading more, in the forums, and hearing from old friends. Talk soon, Rhonda

Quick update: It's not the monitor, b/c at 6am his heart stopped for 5 seconds again, while he was in rhythm, and not on the monitor I mentioned, but a different one that's not on top of his heart. My apologies for the scare. Does anyone here have a pacemaker and arrhythmia?

Rhonda:

Yes, I have a pacemaker, it was implanted originally about 15 years ago, actually the first one was, the second one was implanted about 4 years ago. I do not use it very much it is there mostly for emergency when I have an episode of AF and then go back into NSR my heart takes a dive, when that happened to me before the pacer I would almost black out. My pacer is set at 50 so my heartrate doesn't drop below that. I am very happy that I have the pacer, my mind is at ease I no longer fear my heartrate dropping to almost a flat line as I go back into NSR.

I can do everything that I ever did before the pacer, I garden, cut my own lawn, everything I ever did. I wish your husband well.

Liz

Rhonda,

As LIz says, a pacer basically puts a floor on your heart rate. Your opposition to having one may come from the old style AV node ablation for afib where a pacer was then required from then on. This is a completely different issue. From what you've described, Richard should have one. I'm pretty sure Natale would agree. Now an afib ablation from Natale might be a wise choice. You'd have to ask Natale about which should come first.

George

Maybe someone can help. I can't see my addendum post, nor the two additional posts made by others. What am I doing wrong? Thank you for help

Quote
Rhonda
Maybe someone can help. I can't see my addendum post, nor the two additional posts made by others. What am I doing wrong? Thank you for help

Have you tried closing out of your Browser, and then re-logging in?

Hi Rhonda,

Im glad you found out already it is NOT the monitor! That is just a coincidence of timing. The history you describe is typical of someone who had a very long history of Flecanide working well for a long time (or any AAR drug), but then eventually it stops working. In Richards case, he is an outlier in that it is very rare for folks to get 16-17 years of NSR out of FLEC or any other AAR drug for that matter. However, you not that he wasn't purely in NSR with no arrhythmia episode this entire 16-17 years period, but rather experienced a very good reduction in AFIB burden over these years, likely from a combination of the electrolyte restoration and other risk factor reduction good habits, plus the Flecanide working admirably well and long for Richard.

The drop into bradycardia from AFIB, or fast flutter, could very well mean Richard absolutely may now need a dual chamber pacemaker pronto! Make sure, at his age in particular, you see Dr Natale for a consult .. especially with Richard's long history of living with AFIB/Flutter, even though with many years pretty well controlled.

It also highlights the main point we emphasize now at Afibbers Forum/website, that even if one has a modest number of AFIB breakthroughs a year that may seem 'tolerable', even a handful is too much and almost certainly will lead to further remodeling and eventual worsening of the condition and this can occur even in spite of several years of excellent control of AFIB before the beast kicks into gear again. The list of those who have been able to literally reduce their arrhythmia to a minuscule level of activity each year and sustain that success for many years is far far shorter than the list of those who required equal measure devotion to Self-Health good habits as well as completing and expert ablation process along the way as well.

We tell everyone new to our site that has any life style or cardiovascular risk factors to please dedicate themselves to doing everything they can to minimize the impact of those risk factors and learn the 'Self-health' recommendations we have shared here for many years, including insuring good electrolyte repletion.

For the vast majority in our collective experience, all of these first steps really do help and are a vital part of our comprehensive truly holistic/integrative approach to combining first the best of 'Self-Health' and RFM (risk factor management) with secondly and often simultaneously the very best of Electrophysiology to bring the best overall tools to bare on this very challenging long term condition.

The RFM and electrolyte protocols for all their value, rarely eliminate AFIB/Flutter indefinitely without also including an expert ablation process as well. So our mantra now is, if after a minimum of 6 months to 1 years of dedicated effort at improving ones CVD health and treating sleep apnea, diabetes or metabolic syndrome and obesity .. if doing all this fails to almost entirely eliminate any AFIB episodes over the ensuing year, then do not procrastinate any longer in pushing off that ablation process. Only if you can sustain a truly outstanding almost total elimination of AFIB from your life is it wise too forgo considering an ablation and its a greater risk to settle for only a moderate reduction in AFIB burden by RFM and good self health habits alone.

Allowing a handful of episodes a year will often over time tend to beget more and more AFIB, even if very gradually so.

If you wish to talk more Rhonda, about Richard's situation in light of the sudden and concerning progression recently, please send me your cell number and we can talk about your best options now and some tips on accessing Dr Natale if your both wish to.

Best wishes to both your and Richard and good to hear from you again Rhonda!

Shannon



Edited 1 time(s). Last edit at 04/02/2017 03:54PM by Shannon.

Hello Rhonda - So sorry to read your report on Richard. Please give him my best wishes for a prompt solution.

It certainly does sound as if he needs a pacemaker. I have a friend who had similar lengthy pauses in his HR and a bit of occasional arrhythmia but because he was a runner, he was just attributing that to his already normally low HR....untill the passing out and then, he did get a pacemaker. However, at the time, they found his potassium to be extremely low and told him that once that was repleted, he may not have needed the pacer but didn't want to risk it. He's fine now an the pacemaker records show he never uses it. And he always makes sure he's optimizing magnesium and potassium.

I'll be watching for your news.
Best to you both,
Jackie

It's good to hear from you all, and thank you so much for your most kind replies. Anyway, here's an update...(and yes, George, we did think the pacemaker was the old kind, until it was better explained, hence why we felt better about it, once this was known).

Richard had the pacer put in at the UW, Monday morn, set at 60 bpm. I don't know if it's a dual one, however, and didn't know to pose the question, so I have to assume and hope they did what was best. It's a question I will ask. They kept him on Flec, and also 12.5mg of Metoprolol extended release, with the latter drug still baffling me, as to why they would continue to use it, other than to keep the heart rate lower. He is scheduled for an ablation consult in May, with Dr. Akoum, but Richard and I have to talk more about his options with Dr. Natale, since we, like you all, know he's the best. Richard is presently back in NSR, and feeling much better, but b/c he's still on Flec, I have my worries, esp. in light of what you shared, about remodeling, Shannon. His EP, Dr. Pool, has suggested Dofetilide, as an alternative, but I've done a bit of reading on it, and it's not only scary, but he has to be in the hospital for another 3 days, to convert to this drug. If he can get an ablation, ASAP, then it seems fruitless to change his drugs, at this point. But, if the new left atrial ablation does not work the first time, then we have to weigh his options, until we can get him back to permanent NSR.

Further, in all the mayhem, of recent activity, I forgot to mention that Richard was born with an Atrial Septal Defect, so he has a patch, between his atria, and this was done in his mid-20's. When they do a left atrial ablation, we've been told they will go through this patch, which worries us, b/c it's not like the heart, where it can mend itself, so if this small puncture causes leakage, then they will have to plug it, at another time, so more worries.

As for the drugs, I had a thought last night. One of Richard's major triggers was, and is, MSG/free Glutamate, and if memory serves me, from what I learned on this site, free Glutamate, and low Mg, which he's been taking Mg. Taurate, for a long time, causes Ca to flow into the cells. Based on this info, wouldn't a Ca channel blocker be a better choice to keep him in NSR, until he can get his heart under control, with another ablation (or 2)? Without thinking to reiterate the MSG factor to Dr. Pool, she did say they don't have as good of success rates with Ca channel blockers, but I don't think Richard is their usual case, seeing as Flec has worked for so long, and beta blockers were very negative for him, as well. Does anyone have an opinion on Ca channel blockers vs Dofetilide?

Jackie, I read your EXCELLENT article on Taurine, and have started Richard on it, as of last night. So, thank you so much for the info, as it's invaluable! I'm currently reading PC's excellent article, as well, to refresh what I had previously learned. And, Shannon, I can see you have been an invaluable asset, here, as well. If memory serves me...to Liz and George....I believe you both have been here, for a long time, as well, and you also continue to help. THANK YOU to all of you, who care as much as you do! Where would we all be, without you!

Richard is up and moving around, so we have some things to go over. I may take you up, on your phone call offer, Shannon, but give me a few days to gather our thoughts. Sending our heart-felt thanks to you all. Rhonda

Hi Rhonda,

Yes, I've been around here since 2004.

I understand your logic about a Ca channel blocker, since magnesium is considered "natures Ca channel blocker." However, at least in standard usage, a Ca channel blocker is used to control rate when in afib, not to keep a person in rhythm.

I've known some adrenergic afibbers where rate control will keep their NSR rate lower and then they are less likely to go out of rhythm. Conversely, rate control can aggravate the situation for a vagal afibber.

Cheers,

George

Hi George,

Thank you for the info. I did some reading on Ca channel blockers, and found what you said to be the case. Gosh, there just aren't that many options out there, for rhythm control, but we are thankful that Flec. has worked as long as it has. With the PM and Flec/Metoprolol combo, Richard is still maintaining his rhythm, but it's only been 2 days, so it's hard to tell, at this point. It is good that he can now tolerate a beta-blocker, to keep the HR down, at least until we figure out his ablation. Anyway, thank you, George, for getting back to me.