So freaking demoralizing. Was ablated for PACs last summer, had 2 ugly months of blankling period, then as soon as the meds were stopped (Flec+Met), literally on that same day all PACs disappeared. 4 and half months of pure bliss...and here we go again, the bastards are back (see attached).

They show up EVERY DAY around 1pm and continue non-stop til about bed time. So yeah, lots of hrs of this crap. As you can see, not at a high HR, but nonetheless I feel them (skipped beats feeling, breathless etc).

I have a holter follow up with Natale in July (first holter in January went flawless of course).

Very demoralizing considering I went to the best guy out there. I don't know what else to do. Only 42, healthy in every other aspect of my life, athletic etc. This thing just takes the motivation out of you sometimes. I dread having to go back to meds but I assume they will tell me to do so before I can fly there and have another ablation. Who knows when's their next opening, they move so slow when scheduling these things.

Anyhow...end of my rant lol

Gosh, I feel for you. I have dreaded that very thing once or twice, knowing that for so many of us it eventually comes back.

What have you figured on that might be bringing it on so reliably? Diet, a lot of sitting, exercise, desire to nap when you get sleepy, say after a noon meal...? It could be hormonal, could be a blood glucose thing, a medication that you take an hour prior....anythinig? A boss, or a subordinate, ideation... Obviously I have no idea, but what I'm asking is if you have cobbled together anything testable?

I went crazy looking for any logic as to why they pop up at the same time. I tried eating less, even fasting, eating at a different time. No difference, they come back at that time no matter what. I came to the conclusion it's simply because the body has been awake/active for enough hrs for them to start ramping up at around that time.

I also have a very cyclical pattern to mine . as it has progressed, they are now most of the time, but for over a year, mine started up like clockwork at 6-7pm and stopped by 6-7am, EVERY SINGLE DAY.. There was no rhyme or reason that I could ever figure out. I tried a journal, I tried supplements, hormone testing, cortisol testing, etc. Taurine HAS helped, but I agree, it is very disheartening. I dread the meds as well. They all feel like poison to me because of the high incidence of side effects for me with low return. I'm sorry. I totally get it. Where was the site of your original ablation? I initially had mine done on the right and now it seems there is an errant site on the left. If you are willing, could you talk more about where it started? I know it doesn't help the frustration, but you are not alone!

I don't know if you noticed but they occur in a bigeminal pattern (beat... beat.beat... beat... beat.beat...). That's not unusual and not particularly meaningful. Just an observation because we hear about this a lot here. But I must say you have the most specific start/stop times I've ever heard of.

MeganMn, sorry you are going through the same. I will look at my post-op notes tomorrow and will report back.

How much Taurine are you taking? How soon did it start having any effect?

You say you now have them all the times...what are your plans? I can't imagine functioning if they were there 24/7. Another ablation?



Edited 1 time(s). Last edit at 05/24/2024 05:19AM by WhyMe.

Quote
Carey
I don't know if you noticed but they occur in a bigeminal pattern (beat... beat.beat... beat... beat.beat...). That's not unusual and not particularly meaningful. Just an observation because we hear about this a lot here. But I must say you have the most specific start/stop times I've ever heard of.

Yup, I did notice. And at times I also go all fancy and sport some trigeminal patterns! If only there was a reward for that...ah!

All jokes aside...how serious are these? I know they are not Afib etc but still, won't they affect the heart in the long run? It can't be good for the heart I would assume, correct? I don't fear strokes that much cause my appendage was closed during (successful) MV repair yrs ago, but I fear that these messed up beats will lead to CHF in the long run, no?

Am I wasting my time (and money) by flying back to Natale....in other words, are these PACs fixable, or it's a lost cause? Perhaps someone else in his team that specializes in actual PACs vs Afib?

They're not harmful. You could live with that for years. Can they be fixed? That's a question for Natale, and I don't know if even he will be able to give you a certain answer, but it's worth asking.

You might be interested in this post from a member who materially decreased his PAC's. Also this that I wrote in 2011 about a friend with bigeminal PACs. In both cases, serum glucose control seems to be the ticket. I've talked to my friend in the last few months and she continues controlling her PACs with glucose control plus magnesium.



Edited 1 time(s). Last edit at 05/24/2024 09:46PM by GeorgeN.

I would beg to differ on the harmfulness. It really depends on the daily burden. I have read quite a bit of research in the Cardiology world that is placing 15,000 or more a day as potentially harmful. There are also several studies showing some cardiomyopathy at burdens above 20%. Just my food for thought!

This is in relation to PVCs, but....:

[journals.lww.com]

PACs are apparently a different story?

[www.ncbi.nlm.nih.gov]

Quote
MeganMN
I would beg to differ on the harmfulness. It really depends on the daily burden.

You've seen such data for PACs and not just PVCs? My understanding lines up with the second link gloaming posted. But even if it does apply to PACs too, when I counted the PACs in WhyMe's ECGs and do the math on hours per day, it doesn't add up to 15,000.

I agree, Carey. I just wanted to clarify for other members who might also be reading. There is certainly conflicting data.

[www.nature.com]

[academic.oup.com]

[www.ncbi.nlm.nih.gov]

[www.ncbi.nlm.nih.gov]

[www.ahajournals.org]

I have also seen several studies that show PACs do not carry the same risk. After extensive research, it sounds like the delineation rests on the daily burden.

Quote
GeorgeN
You might be interested in this post from a member you materially decreased his PAC's. Also this that I wrote in 2011 about a friend with bigeminal PACs. In both cases, serum glucose control seems to be the ticket. I've talked to my friend in the last few months and she continues controlling her PACs with glucose control plus magnesium.

Thank you for this, I will look into it.

Quote
Carey

I would beg to differ on the harmfulness. It really depends on the daily burden.

You've seen such data for PACs and not just PVCs? My understanding lines up with the second link gloaming posted. But even if it does apply to PACs too, when I counted the PACs in WhyMe's ECGs and do the math on hours per day, it doesn't add up to 15,000.

Wow thanks for doing the math for me Carey, I am little more relaxed now . I have my own holter/ecg machine...going to wear it for 24hrs one of these days to see what comes up. Will report back.

Quote
MeganMN
I also have a very cyclical pattern to mine . as it has progressed, they are now most of the time, but for over a year, mine started up like clockwork at 6-7pm and stopped by 6-7am, EVERY SINGLE DAY.. There was no rhyme or reason that I could ever figure out. I tried a journal, I tried supplements, hormone testing, cortisol testing, etc. Taurine HAS helped, but I agree, it is very disheartening. I dread the meds as well. They all feel like poison to me because of the high incidence of side effects for me with low return. I'm sorry. I totally get it. Where was the site of your original ablation? I initially had mine done on the right and now it seems there is an errant site on the left. If you are willing, could you talk more about where it started? I know it doesn't help the frustration, but you are not alone!

Here's what my post op docs state:

"All 4 pulmonary veins and the posterior wall of the left atrium were observed to remain electrically silent and isolated from previous ablation. Previous ablative scarring was observed while mapping left atrium. Electrograms were ablated and eliminated along the left atrial appendage ostium. Additional ablation lesions were placed along the posterior right atrial septum with elimination of observed potentials. While ablating along the right posterior atrial septum, transient P-R prolongation was observed followed by the return of the P-R interval to normal limits. The coronary sinus was ablated and isolated."

Lots of previous ablations/scarring. Not sure what the potential path would be. At some point, I would think they couldn't just keep ablating?

Quote
MeganMN
Lots of previous ablations/scarring. Not sure what the potential path would be. At some point, I would think they couldn't just keep ablating?

I had one prior maze ablation for Afib during MV repair surgery in 2021. The afib was gone, but I slowly started experiencing PACs afterwards. I guess I should have just listened to my prior EP, who told me PACs were very difficult to ablate and I should just take Flec+Met instead of going through another ablation. But I assumed Natale was going to be able to achieve the impossible.

After reading lots of other comments here and on reddit, I have come to the conclusion that the worst kept secret of ablations is that while they may solve the Afib issue, for many (most?) ppl the caveat is you will get recurring PACs.

Anyhow, I have my own holter machine and just did 24hrs of it... results attached...not good, around ~20% burden.

Sent it to Natale's team...I can already guess their answer "can you send us a professional EKG from your Dr's office?" Followed by "start taking Flec+Met again" lol.

That's frustrating. That is very similar to my burden and it is tough. I never had afib, only had the PACs and SVT. I would be curious why the increased PACs after ablation, or is it that the PACs always happened and triggered the afib/SVT? Either way it is hard and the meds are harder. Metoprolol quit working for me. What do you think you will want to do?

Quote
MeganMN
That's frustrating. That is very similar to my burden and it is tough. I never had afib, only had the PACs and SVT. I would be curious why the increased PACs after ablation, or is it that the PACs always happened and triggered the afib/SVT? Either way it is hard and the meds are harder. Metoprolol quit working for me. What do you think you will want to do?

Eh...I really don't know. What frustrates me about Natale is that for obvious reasons the guy is a machine and is always in the OR, therefore I am left dealing with his team and frankly they are of little help. Late responsiveness, vague answers and most of the times I feel I know more on the topic than they do (once they said "oh, maybe it's Atrial Flutter".....keep in mind no EKG machine nor EP ever diagnosed me with Atrial Flutter, so that was clearly just a wild guess that came out of nowhere).

Also, took them 2 months to get back to me on my first holter results, after several complaints. Their number of patients appears to be off the charts and I don't think they have enough staff to deal with that.

So until I can actually speak to the man himself and see what he has to say, it's hard to tell what's next for me.

Metoprolol lowers my BP too much and makes me dizzy, Flec gives me weird peripheral vision blurriness. They did work for a while, but episodes started breaking through. And frankly, the ides of being on them for life from age 42 til God knows when does not entice me, long terms use of those drugs is never a good idea.

Let's see what Natale/his office says and I'll take it from there.

I read some of your other posts, looks like you are in a very similar situation as mine, sorry to see that. I upped my taurine to 6g but at this point not putting too much hope on supplements (been there, done that).

Fingers crossed!

I did find that PACs triggered Afib and I think that is the experience of some others as well. Many of the pacemaker models have an algorhythm that tries to outpace PACs and thus stop them from triggering Afib.

Quote
WhyMe
I am left dealing with his team and frankly they are of little help.

It must depend on who your nurse navigator is. I have always had a very quick response -- usually overnight and they would consult with Natale if the answer wasn't obvious to them. I'm sure that it is very frustrating to be in the situation you are in and I really hope you find a good solution.

I used to have thousands of PAC's each day about 12 years ago, Using a modified protocol from researcher George Eby, here's how I knocked them out:
6000 mg. of Taurine ( 2000 mg in the A.M., 2000 mg. in the afternoon, 2000 mg at night)

3000 mg, of L Arginine (1000 mg in the A.M., 1000 mg in the afternoon, 1000 mg at night)

Here's an article from 2006 concerning this problem- [afibbers.org]

Quote
ama1952
I used to have thousands of PAC's each day about 12 years ago, Using a modified protocol from researcher George Eby, here's how I knocked them out:
6000 mg. of Taurine ( 2000 mg in the A.M., 2000 mg. in the afternoon, 2000 mg at night)

3000 mg, of L Arginine (1000 mg in the A.M., 1000 mg in the afternoon, 1000 mg at night)

Here's an article from 2006 concerning this problem- [afibbers.org]

Thank you for this. Started taking 6g of taurine last week. Will add arginine. How soon did you start seeing an improvement? Thanks.

Quote
Daisy
I did find that PACs triggered Afib and I think that is the experience of some others as well. Many of the pacemaker models have an algorhythm that tries to outpace PACs and thus stop them from triggering Afib.


I am left dealing with his team and frankly they are of little help.


It must depend on who your nurse navigator is. I have always had a very quick response -- usually overnight and they would consult with Natale if the answer wasn't obvious to them. I'm sure that it is very frustrating to be in the situation you are in and I really hope you find a good solution.

Thank you, I appreciate it!

Long post here, but I’ve been thinking about all the different things that people aren’t considering any longer on this forum and I think it should more discussed.

The heart is a muscle, it gets irritated like any other organ, if it’s missing something it will let you know, and if you give it what it needs it will reward you by doing what it’s supposed to do. If you are deficient, your heart will simply keep pumping with deficit.

It’s really funny when you think about that we still don’t know what causes Afib but we are treating it with an ablation, but an ablation leads to another form of arrhythmia which is also indicative of heart not being well after the ablation, and the cycle goes on.

I think Carey said correctly that one should always consider all dietary and supplement options for six months prior to considering an ablation. When I had issues isolating my PACs triggers with diet I began to understand that it’s much more important to focus on deficiencies in isolating possible causes rather than simply looking at diet restrictions. So fasting and or restricting certain foods is useless if your body is already deficient to begin with. For example, magnesium, potassium, and taurine are essential but there are many other important essential vitamins to consider as well, deficiency in iron, copper, selenium, carnitine, b12, thiamine, and iodine can all cause arrhythmias. Correcting the deficiency will correct the underlying condition. Thiamine for example is involved in countless processes in the body, from energy production to fat breakdown, acid production, all the way to nervous system and much much more. The sad part is that most of thiamine is lost by age 30 due to our limited diet of pork and seafood and that’s where most thiamine is found, and forget about getting any from your daily wheat intake which is fortified due to gluten depleting the thiamine in the first place, and if you’re deficient the only way to fix it is to megadose with benfothiamine.

If you don’t test for nutritional deficiency you won’t know what to treat, or the only other way to fix it is to fix your diet by eating nutrient dense foods like meats and seafood. Avoid wheat, sugars, and vegetables which contain anti nutrients which are depleting your body. Sorry for the rant, I know it’s not easy but I feel your pain and I wish you all the best.

Johnny

My two cents.....I had 3-4 months of very frequent PVC's recently, day long runs of bigeminy or trigeminy after a family death that triggered it in February.
I had a stress test in September, so no heart disease or underlying conditions.

I had a redo ablation and a Watchman implant April 11 at St David's with Natale,he came into my room that afternoon to speak with me about the procedure that morning but he was laser focused on the monitor and PVC's.
I told him I had 6 and 9 months of PVC runs before, I told him I had Shannon forward him my EKG in 2017 and spoke with his Nurse Norma to schedule a PVC ablation but then the mysteriously stopped.
He told me that needs to be addressed if the burden is too high and to schedule an ablation with him.
He said as long as he can see them he should be able to tame them.

I have added Taurine, Arginine and increased my magnesium and potassium supplementation, it worked to calm my heart back then and evidently about 3-4 weeks ago PVC's stopped and blissful sinus rhythm.

Tomorrow I have a TEE scheduled at day 48 with Dr Di Biase at Montifiore.

McHale

Quote
McHale
My two cents.....I had 3-4 months of very frequent PVC's recently, day long runs of bigeminy or trigeminy after a family death that triggered it in February.
I had a stress test in September, so no heart disease or underlying conditions.

I had a redo ablation and a Watchman implant April 11 at St David's with Natale,he came into my room that afternoon to speak with me about the procedure that morning but he was laser focused on the monitor and PVC's.
I told him I had 6 and 9 months of PVC runs before, I told him I had Shannon forward him my EKG in 2017 and spoke with his Nurse Norma to schedule a PVC ablation but then the mysteriously stopped.
He told me that needs to be addressed if the burden is too high and to schedule an ablation with him.
He said as long as he can see them he should be able to tame them.

I have added Taurine, Arginine and increased my magnesium and potassium supplementation, it worked to calm my heart back then and evidently about 3-4 weeks ago PVC's stopped and blissful sinus rhythm.

Tomorrow I have a TEE scheduled at day 48 with Dr Di Biase at Montifiore.

McHale

Thank you for sharing! I am a bit confused by the timeline....you started experiencing PVCs before of after the most recent ablation with Natale? And are you taking supplements for prevention or because you experienced them after the ablation?

Also, how much taur and argin are you taking? Thank you!

Quote
johnnyS
Long post here, but I’ve been thinking about all the different things that people aren’t considering any longer on this forum and I think it should more discussed.

The heart is a muscle, it gets irritated like any other organ, if it’s missing something it will let you know, and if you give it what it needs it will reward you by doing what it’s supposed to do. If you are deficient, your heart will simply keep pumping with deficit.

It’s really funny when you think about that we still don’t know what causes Afib but we are treating it with an ablation, but an ablation leads to another form of arrhythmia which is also indicative of heart not being well after the ablation, and the cycle goes on.

I think Carey said correctly that one should always consider all dietary and supplement options for six months prior to considering an ablation. When I had issues isolating my PACs triggers with diet I began to understand that it’s much more important to focus on deficiencies in isolating possible causes rather than simply looking at diet restrictions. So fasting and or restricting certain foods is useless if your body is already deficient to begin with. For example, magnesium, potassium, and taurine are essential but there are many other important essential vitamins to consider as well, deficiency in iron, copper, selenium, carnitine, b12, thiamine, and iodine can all cause arrhythmias. Correcting the deficiency will correct the underlying condition. Thiamine for example is involved in countless processes in the body, from energy production to fat breakdown, acid production, all the way to nervous system and much much more. The sad part is that most of thiamine is lost by age 30 due to our limited diet of pork and seafood and that’s where most thiamine is found, and forget about getting any from your daily wheat intake which is fortified due to gluten depleting the thiamine in the first place, and if you’re deficient the only way to fix it is to megadose with benfothiamine.

If you don’t test for nutritional deficiency you won’t know what to treat, or the only other way to fix it is to fix your diet by eating nutrient dense foods like meats and seafood. Avoid wheat, sugars, and vegetables which contain anti nutrients which are depleting your body. Sorry for the rant, I know it’s not easy but I feel your pain and I wish you all the best.

Johnny

Thank you for this, definitely going to look into testing for deficiencies.

Sorry for the run-on sentences, let me clarify..... I had my first extensive non stop run of PVC's in January 2017, 10 months after my second ablation with LAA isolation March 1 2016 ...those lasted approx 9 months.

All my stress tests and echos since showed all heart diameters within normal range.....

I started having my most recent runs at the end of January, high stress and emotional time after my younger brother got sick and passed...so I was 2 months plus in PVC hell already.....

Dosing initially...Taurine 2000-3000 mg daily, 1500-2500mg daily....... maybe more, I saturated my body hopefully to get my cellular levels replenished if that was causing the PVC's....took a few weeks before they started to diminish....

I hope I didn't Jinx myself.....

McHale



Edited 1 time(s). Last edit at 05/28/2024 12:09AM by McHale.

Quote
McHale
Sorry for the run-on sentences, let me clarify..... I had my first extensive non stop run of PVC's in January 2017, 10 months after my second ablation with LAA isolation March 1 2016 ...those lasted approx 9 months.

All my stress tests and echos since showed all heart diameters within normal range.....

I started having my most recent runs at the end of January, high stress and emotional time after my younger brother got sick and passed...so I was 2 months plus in PVC hell already.....

I hope I didn't Jinx myself.....

McHale

Got it, thank you. And very sorry to hear about your brother

Thanks @Johnny. I have had normal levels in the past, but it certainly wouldnt hurt to have everything rechecked by my PCP.

Megan, I’d recommend to start taking coenzymed B complex which contain both B12 and thiamine by country life and see if you get any improvement in 2-3 days, double the dosages as those are water soluble so you can’t overdose but I bet you’ll feel the energy and mental boost the same day. My mother had constant pacs day and night and B complex supplements reduced it significantly on day one and total elimination by day 3 and she hasn’t had them since, that was over 2 years ago. She still takes them as her diet is mostly carbs with some seafood since she doesn’t like meat much, hence the deficiency.

Thanks, Johnny. I have a sublingual B complex I have started but haven't doubled it. I can certainly try! Also, I started Taurine again at night and that seems to have quieted things down as well. They are still happening, but better. So now I am taking 2Gm Taurine AM, 2GM Taurine PM, B Complex, Quercitin. That seems to be my happy spot so far with much less ectopic activity.

I agree. Dr. Natale's team is very hit or miss (mostly miss). Aside from the expert ablation you'll get from Dr. Natale, any issues post or pre op you are on your own. That's why it's imperative to team up with a solid "local" EP. I look at Dr. Natale strictly as my mechanic who does the hardcore mechanic work. For everything else, I work with my local EP.

Now, regarding your PACs, I share my story only to give you hope. After my first Dr. Natale ablation for afib, I started getting nonstop PACs and PVCs 3 months after my procedure. They were never ending for TWO YEARS, but they were never so bothersome that I couldn't function. I just said "F it" and lived my life and largely tried to ignore them. It got easier over time. Then suddenly one day I woke up and they were gone. I haven't had an issue with PACs ever since. That was 9 years ago.

The point is, they may just disappear but it may take some time.

I was always told here and in other resources online that ablating PAC's is a never ending game of whac a mole. You ablate the sources and then additional sources pop up down the line.

It's my understanding that every heart cell has the ability to trigger a heart contraction. That's what causes PACs and PVCs. It's these defective heart cells that have a mind of their own and they go rogue. I imagine we have billions of heart cells. Let's say an EP spots a handful and ablates them, then what? Won't more defective ones just pop up again? This is also why PACs often go away on their own. I was told these heart cells have a lifespan of about 2 years. So if you have a handful of them triggering PACs and PVCs and they eventually die after two years, the problem is gone (until other heart cells act up). At least this is how my local EP explained all of this to me during my two year battle. He kept telling me to "let it ride" and see how things unfold. He told me the issue would likely resolve in no more than two years. He was spot on because after 2 years my PACs were history.

Travis

Quote
tvanslooten
I agree. Dr. Natale's team is very hit or miss (mostly miss). Aside from the expert ablation you'll get from Dr. Natale, any issues post or pre op you are on your own. That's why it's imperative to team up with a solid "local" EP. I look at Dr. Natale strictly as my mechanic who does the hardcore mechanic work. For everything else, I work with my local EP.

Now, regarding your PACs, I share my story only to give you hope. After my first Dr. Natale ablation for afib, I started getting nonstop PACs and PVCs 3 months after my procedure. They were never ending for TWO YEARS, but they were never so bothersome that I couldn't function. I just said "F it" and lived my life and largely tried to ignore them. It got easier over time. Then suddenly one day I woke up and they were gone. I haven't had an issue with PACs ever since. That was 9 years ago.

The point is, they may just disappear but it may take some time.

I was always told here and in other resources online that ablating PAC's is a never ending game of whac a mole. You ablate the sources and then additional sources pop up down the line.

It's my understanding that every heart cell has the ability to trigger a heart contraction. That's what causes PACs and PVCs. It's these defective heart cells that have a mind of their own and they go rogue. I imagine we have billions of heart cells. Let's say an EP spots a handful and ablates them, then what? Won't more defective ones just pop up again? This is also why PACs often go away on their own. I was told these heart cells have a lifespan of about 2 years. So if you have a handful of them triggering PACs and PVCs and they eventually die after two years, the problem is gone (until other heart cells act up). At least this is how my local EP explained all of this to me during my two year battle. He kept telling me to "let it ride" and see how things unfold. He told me the issue would likely resolve in no more than two years. He was spot on because after 2 years my PACs were history.

Travis

Wow Travis, thank you so much for this. May I ask if during those 2 yrs you were taking anything to try and tackle the PACs, whether it was meds or supplements?

Today I was finally able to get a hold of Natale's main NP and she asked "have you ever taken Metoprolol?" I almost dropped to the floor...I mean, really? Do they even look at someone's file before talking to them? If she did, it would clearly show I had been talking Metoprolol for 2 yrs before the ablation. Oh boy....

I am really trying to avoid having to take it again....my whole point for getting the ablation was to get off meds.

We shall see.....

That description above is very helpful. I am only six months away from that two year time period and will be willing to see what happens, however, mine are very intrusive as they happen constantly and keep me from sleeping. I did very much appreciate the information though and will definitely be willing to hold out. I think my personal issue with them is that they trigger short bursts of SVT and I started getting some mild heart effects (early left ventricular issues).



Edited 1 time(s). Last edit at 05/30/2024 07:43PM by MeganMN.

IT is always disconcerting to find oneself being asked time and time again to repeat what should be obvious, and that is surely included in, one's medical records. Still, that is just a signal-to-noise problem inherent in busy offices, even those best run. I would counsel people who really would like to have the best practitioners working on me to not let such small annoyances distract. If you want Natale, you deal, politely, and determinedly, with his front office. Take deep breaths, and politely remind them that they do have your records and that all relevant information ought to be present in the records. Even so, you are dealing with a very busy clerk or nurse who might find it exceedingly challenging on any one day to keep all those dinner plates spinning along that 12 foot beam...if you follow me. If they're struggling, you can dig deep and help them out when they ask what might seem to you to be basic questions. They're asking them BECAUSE they're basic questions, and they need the answers...from you.

Quote
Daisy
I did find that PACs triggered Afib and I think that is the experience of some others as well. Many of the pacemaker models have an algorhythm that tries to outpace PACs and thus stop them from triggering Afib.


I am left dealing with his team and frankly they are of little help.


It must depend on who your nurse navigator is. I have always had a very quick response -- usually overnight and they would consult with Natale if the answer wasn't obvious to them. I'm sure that it is very frustrating to be in the situation you are in and I really hope you find a good solution.

I am finding the aftercare with Natale's team to be non-existent. I am very disappointed and I also asked for propranolol 7 weeks post ablation and was told to go to my family doctor. I have informed them multiple times that I have a strange sensation/pain on exercise or under stress. I received a phonecall about it at two weeks and placed on meds for two weeks but no follow up at all.

Been taking Metoprolol since yesterday per Shannon's suggestion and the PACs seems to be under control for now. But I have mixed feelings about all this...I mean yeah thank God I have something that potentially keeps them at bay for now, but it just feels like I am back to square one.

Last time I went this route, after a while the PACs "figured out" what was going on and I quickly needed to double the dosage...and when even THAT stopped working, I had to introduce Flecanide into the equation. Then eventually it all stopped working and that's when I reached out to Natale.

So is this just a repeat of what has happened in the last 2 yrs? We shall see...

All I know is that I was really hoping to not having to rely on daily meds and that the ablation was going to be the fix. Feels like a never ending cycle.

That is how I feel as well. I wish the Metoprolol would work for me, but it quit working some time ago. I, too, dread the daily meds. It feels very disheartening. Keep us posted.

@WhyMe. I am being recommended to take Rhythmol for the PACS AND inappropriate sinus tachycardia. They are not opposed to another ablation but man, I feel your pain. Either option feels frustrating....

Quote
MeganMN
@WhyMe. I am being recommended to take Rhythmol for the PACS AND inappropriate sinus tachycardia. They are not opposed to another ablation but man, I feel your pain. Either option feels frustrating....

Am I remembering correctly that you had tried Flecainide in the past? Just asking because Rhythmol is the same class drug and very similar.

I was also just recommended to take rythmol for my PACs and PVCs along with diltiazem.



Edited 1 time(s). Last edit at 06/05/2024 01:46PM by kliving.

Rythmol is something I have tried, and it didn't stop the SVT, but now that is gone. The Flecainide worked well, but I got side effects (headache, serious anxiety, and agitation). The EP is hoping that with the SVT fixed, the Rythmol might help with the PACs and the IST. We will see. I just got the results of the last monitor. Only 5 short episodes of SVT (compared to 1500 last time). However, my last monitor was a 19% burden of bigeminy/PACs and this one was closer to 25% plus inappropriate sinus tachycardia. I suspect the IST is a.response to the heavy ablation, but the burden of PACs / bigeminy is not.... Ugh. I don't know...

I actually started adding Flec two days ago cause 12.5 of Met in the AM and PM was still not stopping the PACs. Rather than upping the dosage of Met further and risking lowering my BP too much (I have it naturally relatively low), I preferred to add the Flec, 50 in the AM and PM. Obviously this was all ok with Shannon.

So far so good but STILL experiencing episodes in between my AM and PM dosages (late afternoon). In the past my dosage of Flec was actually 100 in the AM and PM but for now I am really trying to resist not to get to that point yet.

But yeah guys unfortunately it feels like literally the heart figured out how to go around my scars, as if the ablation never happened. Freaking unbelievable. I always assumed worst case scenario I would have some PACs here and there, but never that it would get this bad after only 7 months where I would be back to being in constant PAC status (if it weren't for the meds).