How should I handle persistent/permanent afib?

Thank you LAF forum.

The scope of my ignorance is just now coming to light and I need help.

54 year-white male.

Went to the ER a few weeks ago for the first time in my life as I thought I might be having a heart attack. Was so relieved that I wasn't. They told me I had afib. I thought, "no big deal." They seemed to agree. They said take half an asprin per day and go see a GP.

The next day I felt fine and so I figured I just had "holiday heart" or some such thing. The internet can be a dangerous thing in my hands. So ignorant.

Anyway I researched a bit and started eating paleo and taking about .2 g of magnesium. I didn't worry about too much.

A couple of days ago I had some chest pains and went back to the ER. The pain was in my pec and wouldn't go away. I forgot that I had over done it on some yard work. I just wanted to go in and see what was happening. It wasn't a heart attack but I was still in afib! They told me to go see a GP.

Genius me decided I wanted to see a cardiologist instead. I've got an appointment with good cardiologist in the area but not for 2 weeks.

I realize now (from my pulse--duh) I'm in permanent afib with a heart rate of about 80. My heart seems to continuously skips beats and speeds up and slows down.

-I have no idea how long I've been in afib.
-I feel "normal"
-I've upped the magnesium
-I'm taking taurine
-I'm taking potassium

I thought I was just old and fat. Now I can ad dumb to the list.

Any salient advice my friends?

If you haven't had an EKG until that first afib diagnosis, it's difficult to say how long you've been in afib. I'm a bit disturbed at the aspirin prescription instead of talking about a blood thinner. The thing about afib is one of the big dangers isn't heart attack, it's stroke.

Good that you're doing the magnesium & potassium, especially the magnesium. What brand/kind are you taking? Chelated? Buffered? Buffered isn't such a good idea because it actually stops what you need from getting into your cells.

As for diet, that varies depending on who you talk to here. Personally I'm not a Paleo diet fan (it's the historian in me, there really was no single paleo diet, since people's diets differed depending on area/climate and abilities. But it works for some, so that's great. I'm mostly vegetarian myself.

You'll get much better advice from others, I'm still learning it all myself. Hang in there!
Nancy

Seth,

Making an appointment with a cardiologist is a good place to start. It would be wise to seek counsel from an EP also. Since you are so new to the disease there is a good chance that you will find a drug that will give you significant relief. I believe that as long as you get good results from drug therapy you should stick with it. There are those who believe that getting to Dr Natale or someone as prominent and competent ASAP also makes sense. The research seems to be trending toward ablation as a first response to AF, but the conservative approach would be to try drugs first. Along with the drugs, read and incorporate the strategy as set out here and experiment, many here have had good, long term success with electrolyte repletion and have kept the beast at bay without either drugs of ablations. We are all different.

Sorry you have joined our club, but it is not the end of the world. Educate yourself, dig in and fight back, there is lots of light in this tunnel.

Good luck.

Bill

Nancy, Bill you've really warmed my heart. Many thanks for the encouragement.

I'm taking Natural Calm, Nancy. Supposedly is absorbed well.

Electrophysiologist, Bill?

Thank you.

Seth,

I was diagnosed 1/14/14 with afib while in the local hospital for a minor procedure. I was never bothered by any irregular heart feelings at the time and considered myself to be in good shape, exercising almost daily in a vigorous manner. I never felt a racing heartbeat nor any pounding in my chest. I too was ignorant of this defect at the time of diagnosis. Even after diagnosis I continued to exercise vigorously without any problem.

Electric cardioversion did not work for me that day. I initially saw a cardiologist who treated me with meds until my primary doc told me to get a second opinion. It wasn't until June that I met with an Electrophysiologist. In my mind, this was a big mistake. At the time, I was 51. I'm 52 now.

Just my two cents.........you need to find an Electrophysiologist pronto and address it as quickly as you can with the best trained specialist you can find to help you.

If you will tell us where you are located, there are very knowledgeable people on this board who will make a specific recommendation for a doctor for you.

As for me, after failing Tikosyn, Flecainide, and Metoprolol, I am headed to Dr. Natale for an ablation on 1/27/15. It has been a long, trying year for me. The meds would work at first, but slowly became less effective. Others here on this board have had great success with meds for many years.

I don't normally give advice on this board because I am not a doctor or educated in the medical field whatsoever, but I have been helped and encouraged by so many here. If I made a mistake along this one-year journey, it was waiting as long as I did to schedule the ablation. The meds just didn't work for me and the frequent afib has weakened my heart, resulting in below normal ejection fraction. When I found that out, I moved quickly to schedule the ablation. Over time, my capacity for exercise has diminished to the point that most any activity of any stress throws my heart quickly into afib.......and then it stays there for hours........I don't usually convert until sometime in the night while I am sleeping.

The thought of surgery wasn't appealing to me........so I tried everything else first.......but in the end, I am headed to Austin, Texas......and I am excited to do it. There are way too many success stories on this board for me to be worried about it.

I've taken all the supplements you named without any noticeable improvement. Hopefully it will work better for you.

Again, find the best electrophysiologist you can and see him/her as soon as you can for the best professional advice you can get.

Best wishes.

Ken



Edited 1 time(s). Last edit at 01/22/2015 09:05PM by kls5834.

Wow, Ken.

Many thanks for that. Congratulations on your appointment with Dr. Natale.

I'm in Southern Oregon with fingers crossed that there is someone great here. There are only 3 electrophysiologist to choose from here in the sticks all 3 are at the same heart clinic where I have my first appointment.



Edited 1 time(s). Last edit at 01/22/2015 09:17PM by Seth.

Seth,

Get treatment from an E/P early.....don't waste time. Hopefully the measures they try will be helpful to you.

Very knowledgeable people on this board will make specific doctor recommendations for you, being located in Oregon. However, in this great country we live in, you can travel very easily. I'm driving Sunday from Florida to Texas (almost 900 miles) to see Dr. Natale for the ablation procedure, because of his experience, expertise and great reputation. I have done everything I can to put the odds in my favor.

As things progress for me after the ablation on Tuesday, I will keep you and others here apprised of my progress. I am hopefully confident that things will turn out well.

Best wishes to you.

Ken

Seth,

There two ways that afib can be a quick exit from the planet.

1. Stroke. Your cardio/EP will want to compute your CHA2DS2-VASc score. <[en.wikipedia.org] This will determine your need to take anticoagulation to mitigate the stroke risk. If you lead an active lifestyle and they want to prescribe one of the "new" anti coagulant meds (not Coumadin/Warfarin), pay attention as there is no antidote, at this point, to stop you from bleeding out if you have a problem. I have no experience but around here, ELIQUIS, is preferred (of the new meds) because it has a shorter half life & requires 2 doses/day.

2. Cardiomyopathy. If your afib ventricular heart rate is > 100 BPM, your heart will enlarge if you are in afib all the time. This means that your ejection fraction <[en.wikipedia.org] will decrease. Rate control meds are prescribed to mitigate this.

Once you get past these topics, then you can discuss getting back in rhythm. Two ways - electro or chemical cardioversion. Most times they will want you anti-coagulated for 3-4 weeks before they try this. Alternatively a TEE <[en.wikipedia.org] may be performed to see if there is a clot. The next discussion, is how to keep you in rhythm after they convert you. This will most likely be some kind of med like flecainide. I'd avoid amiodarone as it can have very serious side effects. They will want to make sure your heart is in good shape before they prescribe flec.

If you end up wanting ablation - suggest going to Dr. Natale. He practices part time in San Francisco, closest of his locations to you.

George

You don't say where you are located. How long have you been having symptoms.... AFIB can also creep up on you, even if you are in permanent AFIB. Ask me how I know.

I saw my GP who took an EKG and said nothing wrong. Sent the strip over to my cardiologist friend who brought me in and told me I had AFIB and put me on blood thinners and jerked me around for a year (during which time my left atrium was expanding to the point that I was not a viable candidate for catheter ablation). He finally brought me into hospital and paddled me trying to electrocardiovert me. He, according to my subsequent studies, did EVERYTHING wrong. WRONG WRONG WRONG.....

Without going through my personal experience which is well documented on here, my suggestion is (a) get thee to an experienced ELECTROPHYSIOLOGIST immediately, if not sooner; and (b) read and learn from what is on this forum until you go crosseyed so you can carry on an intelligent conversation with your new EP.

Seeing AFIB on an EKG is a piece of cake, even I can see it after reading up on it. Treating it is another story entirely and you want the voice of experience sitting across from you and 'hands on'. Trust me on this one.

So, IMHO, your path is clear. If you have "permanent AFIB" you want an EP right now. You also want to educate yourself, right now. There are plenty of things you can do to mitigate symptoms or keep them at bay but NOW is the time to get with an EP (who will also be a cardiologist).

You might want to tell us where you are so that those with experience can advise on nearby experts. Personally, I would have little trouble flying to wherever the expert EP is if undergoing a catheter ablation. Good luck. The journey begins.

BTW, I have been on TIKOSYN since 2011, having be electrocardioverted back into normal sinus rhythm at that time on the TIKOSYN startup. My left atrium has been shrinking for 4 years after I spent a year with a cardiologist that did not have the experience or expertise. I am now a candidate for catheter ablation and am booked. My savior is potassium and staying away from triggers like caffeine. I keep my Potassium up religiously. Most stories will be similar.

Murray L

--------------------------------------------------------------------------
Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Ken, George, Murray:

The information you provided and the fact that you took the time to help me both mean more than words can say.

George, I know you're back in good control of you afib and I hope that continues for many years. Thank you for sharing your journey so candidly on here.

Ken and Murray, both of your widely varying roads to maestros are inspirational. I look forward to hearing about your returns to "normal."

Many Thanks,

Seth

My situation was similar to yours Seth. I found out I had AFIB at a routine yearly physical exam. My sitting heart rate was 90; when I stood up it went above 200. Heck, I felt fine; At least I thought I did.

My GP put me in the Hospital immediately. He wanted to make me go by ambulance but I refused and drove myself. I had a Diet Mountain Dew on the 15 minute trip from the Doctors office to Glenwood Hospital in North Louisiana.

When I arrived at Glenwood, They immediately sent me to lab. When I got to the Lab, The girl present grabbed the Diet Mountain Dew out of my hands and trash canned it. This was Dec. 2011

Anyway, I spent 5 days in the Hospital; I never chemically converted. They got my Heart rate down with Beta Blockers and put me on Pradaxa. I was also put on amiodarone which I now totally disagree with as I became educated. It is a very toxic antiarrhythmic medication with major side effects.

After a stent was put in, I was electrically cardio verted 3 months later. It lasted approx. 1 year and then I had 3 more paddle shocks in late 2013. Then I found this forum.

I went to Dr. Andrea Natale in Jan. 2014 and he performed Cather Ablation on Feb. 27, 2014. I have been in NSR ever since. This forum and the great people on here guided this 57 year old man in the right direction to A great world renown EP Dr. Natale in Austin, Texas, a 8 hour drive from my house.

If I was you, I would do the Cather Ablation as soon as you possibly can. I am so glad I did. I was a Persistent Afibber.

. Also, I had lost 95 lbs the same year I was found to be in AFIB. Ilost 95 lbs, walked up to 4 miles 5 days a week minimal and I was in AFIB and ignored it. I had 3 Cardiologist tell me I definitely cheated death. I even had a blockage and when they found it I was astonished because I did not feel short winded when I walked at a pace 16 miles per minute. There were a few times I became overwhelmed but I thought it was just "over doing it".

Good luck my friend. You have landed on the right forum for help and endless love and compassion for anyone desiring help.

Seth your getting good advice from the previous responders.

Your initial ER doctor did not refer you to an EP cardiologist with urgency like he/she should have.

Your AFIB is slow, you are a "low responder" which is good. Keep in mind when doing your research, that most peoples AFIB is very unpleasent for them, with HR's well over 100, even up to 200. This gives you a little more time to comfortably try to deal with the situation.

You should up the Mg to "bowl-tolerance" take as much as you can without getting laxative effect.

Your Doctors should 1st prove that you can't maintain NSR, after several Electrocardioversions, before considering an Ablation. You may want to try multiple times with different medications if they help.

It's up to you how hard you want to try to resolve this before resorting to an Ablation, there is so much info on this site from others that had success fighting this condition.

It looks like you are not certain that you have been in AFIB solid for months on end, but I will tell you, that
the Medical literature says that after a year of solid AFIB, that a patient cannot maintain NSR, without a procedure like an Ablation. On the positive side, keep in mind that the info on this site is on the cutting edge of the research into dealing with LAF, and although I am an exception, I have maintained NSR after up to 3 years in AFIB. I did require multiple Electrocardioversions, and much effort, aided by info from this site.

Seth,
Your biggest immediate challenge is avoiding stroke. The longer you are in AF, the greater your chances of a stroke. I had a mini-stroke last year, after 15 years of very occasional AF. It only lasted 30 seconds, but that was enough for me to end my resistance to anti-coagulants. I'm on Eliquis now, and probably will be for the rest of my life. The antidote is reported to be only months away. Personally, the risk of stroke far outweighs the risk of have a serious, traumatic bleed (and there's no guarantee that one wouldn't bleed to death anyway with a serious traumatic bleed, even if you were being anti-coagulated.)

Once you're protected, you can look towards getting back into sinus rhythm. Diet and medication help, but for 15 years I've been battling this condition - the ablation I had 6 weeks ago was the best decision I ever made. I wish I'd done it 10 years ago.

Protect yourself from stroke, and don't think it can't happen to you - I did, foolishly.

Good luck, you've come to the right place. There's a wealth of knowledge here, and people who know just how you feel.

It always amazes me when people aren't aware they're in AFib. I know the moment it starts, and the moment it ends!

Seth,

I agree with the others that you need to get on coag therapy ASAP to protect you from stroke before you do anything else. Then you can start to develop a plan for the AF.

I am from Portland and there are several EPs here that are competent to see you, but if you are in Medford/Ashland why not go to the Arrhythmia Clinic at Cal-Pacific in SF and see Natale or one of his associates at that clinic. While I have a Portland EP for routine counsel I chose Natale for the catheter procedure as he is the best.

Bill

David:

I have a brother and a sister in law both had a mini stroke-one 3 years ago and the other 2 years ago-neither have AF. It is better to be safe however, nothing is fool proof.

Liz

Hi Seth and welcome to the forum,

You definitely made it to the right place for your condition of persistent AFIB. It makes me very happy and proud to see so many great responses from many of our steady active afibbers who frequent this wonderful little corner of the online AFIB universe and you are very fortunate to have discovered this place so early after diagnosis in your young AFIB career.

I just underscore a few of the most important recommendation already given by quite a few of those 'in the know' above to add even more emphasis to your priorities.

Step 1. since you can't see an EP until this coming week at earliest, continue reading here and use the search function both on the forum and on the website through our archives and AFIB Resources as well.

In AFIB resources which you will find the link too at the top of this page, be sure and Download and print out a copy of the article 'Metabolic Cardiology - The Strategy' by our very own Jackie Burress. I see you are already diving into use of magnesium and potassium as well as exploring a Paleo like diet which are all great avenues to adopt, but be sure you understand the details of working with magnesium and potassium in sequence as well as Taurine, which make up the big three nutrients ... and other nutrients are listed as well that can help along with trigger avoidance and stress reduction that can really help.

But I do want to emphasize that it is far more rare for a persistent AFIB patient, especially one who is asymptomatic and who may have been in AFIB for quite a long while, to get truly satisfactory reduction or control using supplemental and dietary protocols alone. They are still very valuable to adopt and make a part of your on-going life time routine not only to help contribute to a quieter heart but for overall heart and total health improvement as well. Look at AFIB as a wake up call too for taking better stock of your life style, stress and diet to make positive changes for the better as well.

Same story with the drug treatments too for the most part. It's much more rare for persistent Afibbers to have this lousy condition truly under control for the long term on drugs without eventually adding in an expert ablation. These drugs tend to have unwanted side effects and/or lose their effectiveness before too long in many cases and are generally not much fun to take long term.

In the vast majority of cases like yours, its far more typical that an expert ablation process ( of one main index ablation and what may include a smaller touch up procedure as well, but not invariably these days. its especially important, though, that you do not waver from a strong discriminating commitment to choose only from a short list of true top gun persistent AFIB ablationists, of whom there are much fewer than there are good paroxysmal AFIB ablationists.

If you have not have a sleep apnea study make sure you request one from your local EP once you get hooked up with a good one.

Step 1A. Get your anticoagulation status fully evaluated by a competent EP , or even Cardiologist if that is all you can access quickly, and if you qualify which you very well may even at your young age, with persistent AFIB of unknown duration, then go on Eliquis or Coumadin as the two choices .. Xeralto too is an option but do NOT go for Pradaxa.

Also, avoid Amioderone if you are offered that anti arrhythmic. It is the most powerful and often effective AAR drug, but not only does it tend to have a host of long term nasty side effects, but most importantly in your case is that starting Amio now will push back the start of any expert ablation process that might be in your own best interest for at least 3 to 6 months to make sure this very long half life drug effects are entirely out of your system prior to any first index ablation in particular. Otherwise, even low levels of residual amioderone influence can suppress some AFIB/Flutter trigger areas that the EP will be hunting for to ablate and make result in added breakthroughs that other wise would be avoided without the Amio hangover effect.

Step 2. Were you in reality a new afibber with a garden variety of sporadic paroxysmal AFIB episodes that comes and goes on its own, and mostly lasting only a hand full of hours at a time and not typically for a full day or longer, then I would still advise you strongly to seek out the very best ablationist you can find. However, were you in this earlier stage of paroxysmal AFIB status, the list of qualified and very capable ablationist would be much longer than is the case with your scenario having been discovered already with persistent ,and very possibly long standing persistent, asymptomatic AFIB of unknown duration, and very likely a long term.

As such, there is a very much smaller list of truly qualified elite-level EP ablationist skilled at persistent AFIB and who perform mostly these kind of challenging cases every day they are in the EP lab, and you would not even want to consider choosing anyone less than such a top gun to guide your expert ablation process.

At the very top of that list, as you have heard numerous times already, is Dr Andrea Natale. Dr. Natale is not only the single most experienced ablationist in the world with AFIB ablation, but his focus is mostly on persistent and long standing persistent cases .. like yours ... which collectively occupy over 70% of his huge case volume, and many of these are very challenging cases referred to him from around the US and internationally by otherwise very good EPs who realize these patients present too tough a nut for them to crack.

To your great good fortune, as Bill K noted above, Dr Natale practices one week per month at California Pacific Medical Center in San Francisco which is likely your best bet for seeing him easily, not only for the initial consult and ablation, but for the occasional post ablation follow up over the first year, to year and a half, before your care is fully released back over to your local EP for long term follow up.

Dr Natale's office is a great resource too for finding such an excellent local EP in Oregon who they are comfortable working with for your more local/regional long term care.

I strongly recommend you go ahead with your kind of case and start the Strategy protocol today after digesting the article mentioned above, and get the OAC ( oral anti-coagulant) issue evaluated and started immediately, or ASAP, and if it is so warranted as I suspect it may well be even at your otherwise younger age, to start taking the OAC drug without any undue delay if you require it after a competent review of your present situation.

But also, I would arrange now too for an initial consult with Dr Natale in San Fran as soon as you can make that happen as it might be a couple months at the earliest in any event and by then you will likely be more than ready to get his full input on your case for good timely decision making going forward.

I would much rather take his advice, than possibly get some well-meaning advice, but perhaps from a much less experienced EP, and possibly one who doesnt even do AFIB ablations or who is not very skilled at it and may well not even consider persistent AFIB patients as ablation candidates, as some lesser experienced EPs can be prone to being biased toward concluding, due to their own lack of skill and perhaps past poor outcome in dealing with such cases.

Ive seen this happen either from their own failed attempts at ablating such difficult cases, which are often above the head of even moderately skilled EPs themselves, or perhaps the ablation was by another marginal ablationist colleague who may only dabble at these more challenging cases, and thus often do not produce representable real world first class results that are routinely achieved by the rarer true elite level ablationists who are veritable maestro's with a catheter. Stick only with EPs who, like Dr Natale, successfully address persistent and long standing persistent AFIB ablation cases as their daily bread and butter routine and who do not add ablations into a busy schedule doing a lot of other procedures like pacemakers, ICDs, CRT etc etc... Make sure they are in high demand diing only or mostly just left sided ablations with a large number of successful persistent cases under their belt.

You can save yourself all the guess work and uncertainty, Seth, by making the safe and prudent choice with a case like yours and head south only a good days drive from southern Oregon to San Fran, or even a much shorter flight. You will be extremely grateful you did in the long run, especially with persistent AFIB from the start and living so relatively close to such a top level world renowned ablationist!

I flew all the way from Amsterdam Netherlands to San Fran for my first appointment with Dr Natale in early 2008, and then flew back again from Holland to his Austin Texas main center where he spends almost 3 weeks of the month doing ablations (he is also at Scripps Green Hospital in La Jolla Cal for 3 days a month as well), for the start of my very successful ablation process beginning my comprehensive index ablation in Aug of 2008 for my highly symptomatic hard core persistent AFIB at the time.

Choosing Dr Natale from my extremely short list of only two of the worlds top guns, was one of the very best decisions I have made in my life, outside of marrying my sweetheart Magdalena who is a real gem of a gal!

In any event, you have plenty to read here on this chock full website and forum. There are very in-depth resources here combining the best of integrative and allopathic methods and means, as we have all collectively found that the best results tend to come from being open to using all of the best tools at our disposal in the tool kit to put this genie back in the bottle for the long term.

Welcome once again and relax .. you are already well on your way towards the best outcome possible for your case.

Cheers!
Shannon



Edited 2 time(s). Last edit at 01/25/2015 08:47AM by Shannon.

As regards choosing an ablationist, I was fortunate almost 10 years ago that my cardiologist told me that the EP ablationists here in the Debver area were not good at doing ablations and were "just learning." I don't know the situation in Denver today, nor do I know the situation in Oregon, but I am glad that I did extensive searching and found Dr. Natale. The trip to the San Francisco area (actually a bit north) was easy except for two things.

1. My wife locked our rental car keys in the car. Good thing we had AAA.

2. It is almost impossibe for folks to get an IV into my veins, and despite my many. many warnings ahead of time, for the required contrast scan, they fully believed that they were capable of doing that. I started to worry when they attempted the IV insertion in an extremely cold room - not a very good place to start an IV for someone like me. They failed. This was on Wednesday, and the ablation was scheduled for Friday. They promised to have a MD with a specialty in IV's there on Thursday, but they again failed (the scan building was 60 miles from the hospital). This resulted in many calls to places like UC Berkeley, and they finally found a protocol for inserting the IV in my foot, which worked, but is a highly non-recommended procedure. Anyway, they got the results to the hospital and the next day everything went fine. However, I did have a dizzying reaction to the med they put me on, went to the hospital for a ultrasound of my heart (they told me I had too much muscle to see much of anything) and I discontinued the meds, and have been in NSR since.

Hopefully, they have ironed these things out by now!!

Good luck.

Hi Elizabeth,
Yes, of course - anyone can have a stroke or TIA whether they have AF or not. I beleive 85% of strokes are non-AF related. But that still leaves 15% which are, and that's a high correlation from a single cause. Shannon (as ever) has given really sound advice!

Just a reminder to sort out the wheat from the chaff. You are getting loads of good advice on here but I would caution you about one thing in particular - the same thing that happened to me. And that is simply this..... if you are in persistent or permanent AFIB, it is quite likely that your heart is remodeling as they say. In my case, and very likely in yours, the LEFT ATRIUM will work overtime trying to get sufficient blood into the ventricles in an attempt to oxygenate your blood and your body. This will result in expansion of the LEFT ATRIUM (perhaps both). Your muscles will grow muscles (?) and when you finally see your EP0mm of choice you may be told what I was told... "we can try an ablation but chances of success are slim, very slim and risks are higher... much higher, as your heart wall, due to the stretching, have become thin in places". I was at 60mm LA dia. When I broke 50mm. they were considering an ablation and as I continue to shrink, my success rate looks better and better. I have had to put up with caustic drugs and constant poking and prodding for 4 years now. I am now booked for ablation and awaiting my date (Ontario - social medicine). Don't make the same mistake I did. Get top rated professional advice immediately. I would have had ablation surgery 4 years ago had I not procrastinated seeing an EP, had I not been misdiagnosed, had my cardiologist not messed me about for a year, etc. DO NOT sit around and wait to see what will happen. You may not like what you discover.

Murray L

--------------------------------------------------------------------------
Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.