Disappointed.

Disappointed

by AgentX86 - 2022-02-04 21:03:01

Join the crew.  Afib and Aflutter are exceedingly common and becoming more common. Around here it's ubiquitous.  It's good that your EP found it.  While these diseases aren't terribly dangerous in themselves, they can easily cause enlargement of the heart (cardiomypathy), pulmonary embolism, or stroke.  None are fun.  It's critical to be properly treated for AF and AFL.

AF and AFL can go away on their own but it's highly unlikey.  It may be the case that you're lacking trace metals (electrolytes) - potassium, sodium, and magnesuium but this would be trivial to find and treat.  If you can't get them from your diet, of the three only potassium is given as a prescription.  We get way too much sodium already and magnesium is available over the counter.  As the name implies milk of magnesia's active ingredient is magnesium oxide.  This is the worst way to get magnesium (think: side effect) but that's the idea.

Putting off an ablation was a mistake.  AF and AFL are progressive diseases.  Afib begets Afib.  As the heart gets used to arrhythmia, it tends to want to stay in that arrhythmia.  You have had seven minute runs, which isn't a lot but IMO needs to be treated agressively.  The first and immediate need is an anticoagulant.  You're risking death, or worse, without an anticoagulant.   Next is some sort of heart rate control.  A beta blocker like metoprolol is very common.  There are many others. These will make you safe(er).

Once the heart rate and clotting issue is dealt with, the next step is attacking the arrhythmia itself.  If you're not symptomatic (doesn't apply to you, obviously), most do nothing more - there really isn't any reason to.  If you are (you and many, many, here) you can use antiarrythmics to keep the heart in rhythm.  However, all of these are toxic and toxicity is in line with their eficacy. As your AF/AFL progresses, you'll most likely go from one drug to the next, increasing your risk.  Some drugs will suddenly switch from antiarrhythmics to pro...

IMO, and I wish I'd taken my advice, the best bet is to do the ablation thing (what you describe above) sooner than later.  You have a much better chance of a good outcome the sooner you do it.  Yes, sometimes it takes a second go or maybe even have it done again years down the road but it really isn't a big deal.  I've had three, unfortunately all unsucessful.  Mine was a special case but the fact is that solving the problem early is the way to go.

The ablation procedure is simple, for you anyway.  As I said, I've had three plus another, a little different type, when I had my PM implaned.  All but one were done with a local anesthesia only.  The one that used a sedative  was the worst (they did a cardioversion when I was awake - YOWWWW! (...bad words to follow). Like any procedure, there is risk but the chance of a really serious problem is miniscule.

It is very important to have the best EP possible do the ablation.  There is a huge difference in the outcome between the best and the also ran. This is a sub-specialty.  The EP running the catheters should be doing at least a hundred per year and have a thousand under his belt.  It sounds like they're suggesting an ablation covering both the right and left atria so the above goes double.  Travel, if you have to.  Get the best in the country, if you can. 

Positive thoughts are sent your way

by Gemita - 2022-02-05 07:23:04

Runpacer, I wouldn’t be too disheartened since at least something positive has happened:  you have got an answer.  Some members go for months, or longer without a diagnosis for their symptoms, since arrhythmias can easily be missed during short term monitoring or go unrecorded if their duration and speed do not reach the parameters set by your EP for their recording and storage on your pacemaker.  Perhaps this is what has been happening to you until now, when your arrhythmias are perhaps becoming more frequent and longer lasting?

What to do about them?  I believe an ablation for “regular” Atrial Flutter has a higher success rate and is easier to fix than Atrial Fibrillation (the latter with a pulmonary vein isolation ablation). You might decide to fix Atrial Flutter first, especially if Atrial Fibrillation is well controlled.  Often when one atrial tachy arrhythmia is controlled, there will be fewer triggers for any that remain, but this is not always the case, especially with Atrial Fibrillation.

Control of heart rate is important and so is proper stroke protection (with an anticoagulant like Apixaban, not an anti platelet like Aspirin) if you have risk factors, but I am sure your doctor would have advised you if you needed an anticoagulant?  

Anti arrhythmic or rate control meds or both?  I would go for rate control (beta blockers or calcium channel blockers) to control heart rate which might be safer than anti arrhythmic meds because the latter may eventually become pro arrhythmic and make your electrical disturbances worse.  This is what happened to me.  In addition, anti arrhythmic meds are not always effective.  My EP quoted about the same percentage success with anti arrhythmic meds (40%) although clearly some members have had some excellent periods of respite from AF using anti arrhythmic meds alone, so it is all very trial and error.  I tried Flecainide and Digoxin + Bisoprolol.  I now only take Bisoprolol and am doing well without having had an ablation, but I am not a runner like you.  Clearly some of us suffer from exercise induced arrhythmia and some from bradycardia induced arrhythmia which is why I keep my Base Rate set at 70 bpm since lower values would quickly trigger ectopics and then develop into atrial tachy arrthymias like Flutter, Fibrillation.

There is no right or wrong way to deal with arrhythmias.  We have to find what works best for us, with the lowest possible risks. Arrhythmias can start and stop for no apparent reason, or they can be caused by an acute health condition like an infection, high blood pressure, sleep apnea or chronic health conditions like COPD, Thyroid dysfunction, electrolyte imbalances.  In fact any stress may trigger these electrical disturbances.  All we can do is to try to stay calm, learn what our triggers might be and adjust our lifestyle accordingly to help control them. 

We are all here because of electrical disturbances - Sick Sinus Syndrome, Blocks of various kinds, arrhythmias, so you are definitely not alone.  I am glad I didn’t take out the sledgehammer to try to kill my arrhythmias.  I may well have been in a worse place now if I had.  I would take your time to come to a decision and with your doctor’s agreement, perhaps start a rate control med (low dose) to help with any high heart rates?  Then see how you go or perhaps move towards an ablation immediately with a chance (AF) of 80-85% medium term cure or (95%+) chance of cure with Atrial Flutter.  Of course, ablation is not always the answer and you may come off worse or need repeat ablations in the future.  Unfortunately AF is usually not curable but it is often possible to control it for long periods if we stay calm and learn to understand our triggers or treat any known causes.  Good luck

Disappointed: docs notes.

by runpacer - 2022-02-07 12:20:14

Phillip I Cohen is a 65 y.o. male who presents for initial EP Consult with history of:

- Complete heart block; device dependent

- Cardiac Device History

- SJM DDD PPM; dependent

- Atrial Arrhythmias

- AFL 12.2019 S/P TEE DCCV

- Atrial Fibrillation; PAF

- CHADS- VASc score 1 point; Eliquis

Diagnostic/Imaging Studies:

Electrocardiogram

September 2021 - AP-VP rhythm

February 2021 AP-VP rhythm

Cardiac Device Interrogation

February 2022

SJM DDD PPM

Not at ERI

Dependent: YES

AMS burden 4.9%

AF lasting between 3-7 hours mostly, however some longer (16 hours)

February 2021

Normal device function, no AMS, no HVR, rate response ON

Thank you for the notes

by Gemita - 2022-02-07 18:19:33

Philip, 

I have just seen your docs notes.  I see you have a St. Jude pacemaker set in DDD mode and that you are dependent.  It seems you had a transoesophageal echocardiogram/cardioversion for Atrial Flutter in 2019.  You also have paroxysmal AF, a CHADS-VASC score of 1 point for which you are receiving Eliquis.

It doesn’t give any pacing percentages as to how much you are paced in the atrium/ventricle which is a shame.

I see you have had two echocardiograms in 2021 and that you are not at ERI (battery) which means that your pacemaker is still fully functional but it doesn’t give indication of battery life remaining.

Cardiac device interrogation February 2022 shows:

AMS = Automatic Mode Switch burden of 4.9 % (since February 2021, when no AMS or HVR (high ventricular rate) was recorded).  Mode switch occurs during high atrial heart rates so that fast atrial arrhythmias will not be tracked.  It returns to DDD mode at cessation of high atrial tachy arrhythmia.

I see you are having longish episodes of AF (3-7 hours and even longer - 16 hours).  In my opinion Phillip your AF is not well controlled and you are obviously getting some high ventricular rates as well - hence the 4.9% mode switching, so in your shoes I would be looking at better treatment.  I know, not what you want to hear.  

I am sure the sooner your arrhythmias are controlled, the sooner you will be able to get back to your activities.

atrial

by runpacer - 2022-02-09 07:59:00

I haven't stopped activities. I run everyday. I dance. I may move slow and I can feel the Afib... I can go back into the notes and see what was there. I just copied a few. I little understanding of the abbreviations. I do know I had Atrial Flutter for years. I was treated with a pacemaker and the cardioversion. I thought the problem, over the past year, was with an unadjusted pacemaker. I was wrong. I developed Atrial Fibrilation. I was placed on Eloquis last week as initial prep for a series of ablations to correct the Afl and Afib. I understand I am 100% depended on my pacemaker. Without it my life would have ended two years ago. 

The problem....

by runpacer - 2022-02-09 08:11:23

My primary cardiologist use to see me to make frequent adjustments to my pacemaker. Unfortunately he passed away. He developed a brain tumor and died from a fall. 

The doctor who replaced him, when he saw me in 2021 reviewed my ecg and medical reports and said everything was fine and he would see me in one year. 

What is my fault is that I had eventually developed symptoms and attributed to an unadjusted pacemaker. I waited a whole year before seeing my doctor. That was my fault. Between the long wait, only taking low dose aspirin with new symptoms caused this new case of afib... Now I wait for a pending procedure. 

Hopefully, I report and see doctors when I have symptoms ASAP. Today I may send a text with questions about my med. 

I am really disappointed in myself. I've done things like this before and always make an attribution of syptoms that turn out to be incorrect and cause of long delays.  

Don't blame yourself

by Gemita - 2022-02-09 12:58:41

Phillip,

None of this is your fault.  Arrhythmias start and stop for no apparent reason.  

I recall you told me about your cardiologist.  That was tragic and I am sure you miss him.  

Even if you had taken action earlier against your arrhythmias you may still have found yourself in the same position today - facing an ablation - so nothing has really been lost and with only 1 point, you didn’t need to be on an anticoagulant like Eliquis earlier, only now you need it to protect you during your ablation.  As long as you are on a rate control med (a beta blocker or calcium channel blocker to prevent high heart rates), you will be safe, so please don’t worry and focus on staying well for your ablation.

It takes time to recognize the symptoms of an arrhythmia, especially when they first occur.  Usually they just cause awful symptoms, but some don't even feel their symptoms, so would they be to blame for not acting earlier?  Of course not, and nor are you to blame for any of this.

Disappointed

by runpacer - 2022-02-11 17:55:38

What does AMS burden - 4.9% mean?

I did try to explain in my earlier comment

by Gemita - 2022-02-11 18:18:30

Phillip, 

AMS burden 4.9% means the percentage time automatic mode switch (AMS) is triggered to prevent fast heart rates from being conducted from the atria to the ventricles.  When a fast atrial arrhythmia stops, mode switch returns to your normal setting.  It is there to prevent the tracking of a fast atrial rate.  

I usually ask my doctors how many mode switches I have had in a 12 month period and this will tell me how many high AF/Flutter/Tachy episodes I have had.  This is more meaningful than a percentage figure.  A year ago I had over a 1000 AMS and the year before over 2000 so this past year my arrhythmias have reduced.  Remember that some of us get in and out arrhythmias, so although 1000 sounds a lot, mine don't last long.  I have had episodes arrhythmia of 5+ hours or longer but often they are over in 30 mins or even less.  Hope that helps