Holiday tale of new meds & Flec

Hello everyone,

I hope that you are all enjoying this holiday time. I had a blissful Christmas, happily in NSR for a good little stretch of time before and after. On the way out to my walk in the woods on Christmas, I met the friend of a neighbor of mine and we had an interesting chat.

The neighbor is a pharmaceutical chemist who develops medication for cardiomyopathy. Half in jest, I asked if the friend makes drugs for cardiac patients, too, and he said, yes, he's working on arrhythmias.

😲

We talked about Flecainide, medications, side effects, etc., etc. Funny how he seems to have a better handle on the role of lifestyle in dealing with AF than some of the docs do! Good sense of humor, too.

"I'd like to place an order, please!" 😂😹

I asked if he could come up with a medication that basically does what an ablation does, target the areas that conduct the erratic impulses, and without side effects. He said that he's been working on that, that he'd had success with it with mice when working in France, but it became impossible to take it to the next level to try it on humans because of all the regulations, which is why he came to the US. He's a researcher at UCSF (University of California at San Francisco), a well-regarded medical center.

I'm going to see if I can connect with him again and continue the conversation, as it was only a brief, in passing kind of thing.

What an unexpected encounter on Christmas day!

Yesterday I went for a walk in the woods near my home and perhaps went a bit too far. This morning I woke up in AF. Fortunately it was a mild episode, so I waited an hour before taking Flecainide.

In the past month or so, I've actually felt much better in general, more myself, and have had longer stretches between episodes. After taking the Flecainide this time, I felt horrible. I think it actually made the AF worse, even though it did stop it within 2.5 hrs. I still feel the awful depressive effects of Flec even after the episode stopped. Maybe I need even a lower dose now, not sure.

Last time I spoke to my EP, he said that having a 3rd ablation was up to me. I could have one as soon as January 30, if I wanted to, but that timing would create a work/financial nightmare, so am not terribly eager to do that, though I'm sure I could figure out something. He performed the last one, which didn't work, so there is even the question of whether to continue with him or keep looking, which feels exhausting at the moment. Fortunately, I'm in an area with many EP's, so that's a blessing.

This is basically a thinking out loud post. I don't know yet exactly what I want to do, but I do know that I really do not like this awful Flecainide depressed feeling. It is debilitating.

It seems that my body is going through yet more changes in the AF adventure. What a stark contrast to feeling good, clear, like myself, able to engage in things I haven't been able to for months, only to be slammed back into a stupor by the episode/Flec.

I know that there are no easy answers and I'll be giving more thought to next steps. Sharing about it among people who understand helps.

It sure was nice to have a lovely Christmas in NSR, though!

Happy New Year to all! 🎉

[Hidden]

Happy New Year to you!

[Hidden in reply to Hidden]

Thanks! Same to you, Hoski! 🎉

[Kaz747]

Sounds like an interesting walk in the woods Nella. It’s funny who you can bump into. Your new chemist friend certainly sounds interesting. Let’s hope the researchers can come up with something new. I know it’s a long process from research to commercialization (I used to work at a university) so if they do I hope it’s in our lifetime. I’m 54 and plan on being around for quite a few years yet so fingers crossed 🤞🏻. Take care.

[Hidden in reply to Kaz747]

Yes, it was an amazing encounter. I was encouraged to hear that they're even looking into improving the medications. I know it takes a really long time for these drugs to be available. I hope to learn more from him about where they are in the process and how long it might take.

Happy New Year! 🎉

[greencrop]

Nella, what a pleasant Christmas surprise for you, learning that someone is at least trying to develop medication that could be as effective as an ablation. Sorry to hear that the Flecainide gave you a depressed feeling.

I just saw on TV a report regarding the low number of marijuana shops that have opened in California, that recreational marijuana didn't turn out to be the cash crop that the State had expected. Then I wondered if anyone suffering from Afib has found any benefit from marijuana. I have my first appointment with an EP in a few weeks and perhaps I'll ask him that question.

You say you're in an area with many EPs. I'm in a county 30 miles southwest of you and I don't think there are many EPs here. My cardiologist referred me to the EP and I'm hoping he might be able to prescribe some different medication if I'm not a candidate for an ablation. Recently someone in an Afib forum commented that insurance usually will not pay for an ablation for anyone age 80. But in the US most 80-year-olds have Medicare, so I think the question would be whether or not Medicare will pay, and then the supplemental insurance has to go along.

I hope you're able to make a decision about whether or not to have a third ablation, whether to find a new EP, as I'm sure each Afib episode leaves you in a quandary over what is the best thing to do.

Wishing you and everyone a Happy New Year with fewer Afib episodes.

[Hidden]

Hi greencrop, thanks for your comment. So interesting how much better I feel with that Flecainide out of my system today! It's much harder for me to make decisions and think clearly about course of action with that stuff mucking up my brain. My approach now is to see what else I can do to support my heart so that I can minimize the need for Flec.

Sounds like you're near the Bay Area; there are loads of EPs here, relatively speaking. I drive 29 miles to my guy, in Redwood City and I know they get patients for ablations from all over California, other states and countries. It's worth it to travel a bit, I've found. You might keep that in mind if you find you don't connect with your EP. Of course, insurance plays a role, too, in that you have to see which EPs are in your plan.

There are other reasons I wouldn't choose to use marijuana, medical or otherwise, but I happened to come across this article yesterday and it recommends not using it for AF.

everydayhealth.com/columns/...

Best wishes for a Happy New Year!