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EP Update and Plan

Posted by MeganMN 
EP Update and Plan
February 26, 2024 09:20PM
Well, I feel pretty good about my EP appt. today. He was really succinct about a plan, goals, and end game. I am going to still keep my consult appt with Natale, but I really like my current EP. He is just such a nice person.

So he has proposed in ascending order, four medications to try. He is starting with the mildest and going to the strongest. He is recommending to start with Bisoprolol, then Verapamil, then Sotolol or Tikosyn. He is leaning towards the Bisoprolol because I am now running tachy much of the time. So I am now alternating between inappropriate sinus tachycardia and SVT/Atrial Bigemjny.

He also said that based on my last monitor he can see that I am having more and more episodes during the day and increasing bouts of tachycardia. He said we can try each med for 1-2 weeks and we will revisit in April. He said ultimately, we may have to look at other alternatives for an ablation- such as later in the evening, having me stay up all night for a few days, and also potentially doing a blind ablation where he ablates based on my EKG even if he cannot induce it.

He said worst case scenario, if it just gets worse and worse, he could do an AV node ablation and pacemaker, but that is obviously his last choice for options. He seemed to understand that the meds may just be a stop gap and that ultimately, I will be back in the EP lab. I feel good about the plan.

I will be curious to see.how his plan compares to Natale.

Edited 1 time(s). Last edit at 02/27/2024 12:04AM by MeganMN.
Re: EP Update and Plan
February 26, 2024 10:08PM
It looks like a solid plan, I hope you can find some relief! It truly sucks when your heart is acting up and nothing seems to work for it.
Re: EP Update and Plan
February 26, 2024 11:01PM
Try to avoid a sinus node ablation and pacemaker. Although your ventricles will be paced safely, you will still feel your upper chambers on crack with the same symptoms. It is the absolute last resort. I did it because the entire month, except for a couple of days in November 22, I was hospitalized with uncontrollable tachycardia. Nothing worked. When I reached my 54 ecv (by then it didn’t help), I had no choice because I couldn’t live with 175-195hr.

But you have options. You are not so bad you need to be either in the ICU or a lower tier care.

You also can’t base your decisions on your doctor’s great bedside manner. It helps of course but #1 should be skill and ablation experience. I would recommend a high tier experienced skilled EP. There are a few. You need to read Carey’s experience he posted at the top. I’m sure he will agree that personality is not the first trait you should seek when finding an EP.
Re: EP Update and Plan
February 26, 2024 11:16PM
Megan, did you really mean a sinus node ablation? Or did you mean an AV node ablation? Very different things.
Re: EP Update and Plan
February 27, 2024 12:05AM
Oops, Yes, I did mean AV Node. I am absolutely still doing a consult with Natale. I just needed some relief in the meantime, so hoping that one of these meds will give me a little sleep and a little less feeling like I am running a marathon all night.
Re: EP Update and Plan
February 27, 2024 12:49AM
Okay, glad to hear you're still doing the consult and I totally understand your need for relief. We're all rooting for you to find it permanently.
Re: EP Update and Plan
February 27, 2024 08:17AM
It's good news all around, even if it is only enough to give you something to hang onto, for the present, Megan. I hope whatever is to befall you at their hands comes soon, and that it is effective.
Re: EP Update and Plan
February 27, 2024 01:07PM
My "plan" by my first EP was very similar, and I followed like a lemming off the cliff.

Medications caused me all sorts of issues, the worst of them conversion pauses, which in me caused near-syncope. I was told to stop driving. There's also the stress and just plan suckiness of being onboarded for sotalol or tikosyn. This little medication journey was 6 months of hell. For some, AA's are great, for others not so much.

IMHO the long term path to NSA is an ablation at a top level facility and EP. Austin fits that perfectly.

Good luck.
Re: EP Update and Plan
February 27, 2024 03:55PM
Thank you for the honesty. I generally have terrible side effects from medication, and most likely wouldn't gry to the Sotolol and Tikosyn phase anyway, but it has been over a year since I have had any decent sleep and am willing to at least try the Verapamil or Bisoprolol just to get rest and relief temporarily. I suspect that the Bisoprolol will work, as the Metoprolol did, and then stop working just as the Metoprolol did, but a few months of relief would be really nice. Even if I do the consult with Natale and he recommends ablation, I can't really get down there right away, so if I can have some success in the meantime, It is still a win. I do have similar experiences as you with meds, though, so We will see. Again, I appreciate your honesty and am realistic about the expectations. I am looking forward to my consult with Natale.
Re: EP Update and Plan
February 27, 2024 05:40PM
I had no side effects while in Sotalol but towards the end I stopped working. I had six good months of nsr until I got vaxx and then Sotalol stopped working. Some of these drugs you may need to be admitted to the hospital for a few days while under observation. Tikosyn For sure.
Re: EP Update and Plan
February 27, 2024 07:14PM
My journey with medications has also be hell.
I was on Metoprolol for 5 months and it did nothing to help my A Fib.I then switched to Sotolol which kept me in NSR for about 3 months then quit working and every night I would have 2 episodes of A Fib as recorded on my Kardia .This went on for 6 months then I started to pause when coming out of A Fib, I actually looked forward to the pause as it signaled the end of my episode.

All this time I never once had a good sleep.

The pauses were finally life threatening at 18 seconds long and I received a pace maker. This did not stop the A Fib so they put me on Amiodarone which did the trick for about 95% of the time .I stayed on Amiodarone for 4 months and had to stop as it was destroying me with every side effect you can imagine. I finally had an appointment with an EP about ablation and he stopped the Amiodarone and I slowly went back on Sotolol which is now working again for the last 3 months, I still have the odd night time A Fib event but they only last for 45 minutes or so.
The ablation will take place sometime from May to August.
Re: EP Update and Plan
February 29, 2024 02:04AM
Thanks everyone. I am on Day Three of the Bisoprolol. I do not have high hopes. It has dropped my heart rate to the mid to upper 50s at night with 60-65 during the day. So it has helped the Inappropriate Sinus Tachycardia. However, I am still having Atrial Bigeminy and SVT so it doesn't feel great when I get the pause. Compensatory pauses 1.8-2 seconds because the rate is slowed down so much. Again, glad to have it slowed down, and I know that it isnt life threatening, but not sure slow feels better with the bigeminy. Will keep on truckin'.....
Re: EP Update and Plan
February 29, 2024 03:32AM
Carey, the Beta Blocker seems to be causing blocked PACs. I know it isn't a long pause, but man, it feels awful.
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Re: EP Update and Plan
February 29, 2024 03:53AM
Yeah, those are compensatory pauses caused by the PACs. They're about 1.2 seconds long, so not dangerous, but I'm sure they don't feel good. But why do you think the beta blockers are causing them? Without the BBs you'd be in tachycardia, right? That doesn't feel good either and it's more harmful than short pauses, which aren't actually harmful.
Re: EP Update and Plan
February 29, 2024 04:47AM
Thanks, Carey. I needed that perspective. I think, ultimately, that I am just grieving the loss of my old self. I want to feel good again. I know that the tachycardia is worse. And I know that it is unrealistic to have no side effects, but I just want to feel like I used to. And so I have become hyper focused on how I feel. Really, I just feel sad that I can't be like I used to be without meds. But thank you for reminding me that it is okay. I just feel sad.
Re: EP Update and Plan
February 29, 2024 06:31AM
I get it. Trust me, I do. I've been where you're at and I spent several years there. You'll find a way out of this, maybe even this year.
Re: EP Update and Plan
February 29, 2024 02:35PM
I have been there, and still am to a degree. Just set smaller daily goals and when you exceed them, it is a good day. If you don't get up the next day and keep going. I spent a couple of years playing with doctors and cardiologists that only wanted to prescribe Metoprolol and leave me in a corner. I finally put together a team that did something useful for me. It's still not a success, but I am feeling much better about 4 days out of 7. Maybe a bit more some weeks. I just try to focus on the positive things and work on the rest as I get to it. Just keep a positive mindset and with effort you will get to a resolution that is good for you.
Re: EP Update and Plan
March 01, 2024 03:58AM
Thanks Guys. I appreciate the support. It is tough to be here and I know you get that. I have a tough time because I get tired of complaining about it. I have three kids that we homeschool, am trying to work part time in the ER as a nurse, and my husband and I are building an addition. Life is busy and doesn't leave much room for low function. One day closer to April......and my consult with Natale. I am hoping he is sympathetic. I have heard he doesn't take PACs as seriously, but when my average burden is 20% and my nighttime burden is 20-80%, I need someone to take it seriously!
Re: EP Update and Plan
March 01, 2024 04:06AM
He's as sympathetic as you'll find.
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