Catching up: Hello everyone, It's been... - Atrial Fibrillati...

Atrial Fibrillation Support

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Catching up

12 Replies

Hello everyone,

It's been a while since I've posted. I found that I needed a break to focus on aspects of my life that needed more attention. Now I feel like posting an update.

Just for grins, I've included a photo of the real Nella peeking out from her hiding place under that corner of the bedspread. Her favorite game is to try to grab my feet as I walk by. 😹 It does get the blood moving when she gets me!

In late August, I found this forum and dove in and learned a lot, both in terms of information and by example. I learned about the many different ways people experience AF and how it's treated, differences in approach between the US (where I am) and Europe, the role of lifestyle, the mental game of AF, and the fabulous videos created by Dr. Gupta.

Perhaps the most important part of my turbo-charged AF education was the words of wisdom from those of you who've been dealing with it for decades and who have given me examples of how to take charge of the situation, taking this much broader view into account.

(I was first diagnosed 5 years ago; ablation in Dec. 2013; no AF for 3 years; AF started again in spring 2017, triggered by emotional stress; 2nd ablation in Dec. 2017; AF has continued ever since. In all that time, till Aug., I had never learned the info I picked up here.)

As a result of all this, here's where I am.

I went off Metoprolol, having been prescribed it 5 years ago, with no docs ever questioning it. My EP supported my going off it when I brought it up, based on what I learned here. It has definitely proven to be a good move. My heart rate stays in the 60-70s and into the 90s with exertion. I'm free of the side effects now. Relief!

In late September, after leaving the acupuncturist I mentioned having worked with for 2 years, I decided to take a break from the herbal formulations he'd given me to see what would happen. I found someone else willing to order herbs for me at a fraction of what the other guy had been charging me (Ha!) and have continued on blends that support my immune system and detox my kidneys, since I'm taking Flecainide.

I quit several of the other herbs, with good results. I had a first appointment with a new acupuncturist who is literally across the street from my home. So far, so good.

I decided to look for a new cardiologist, my reasoning being that if I'm going to be dealing with AF on a long term basis, I want to do what I can to find a doctor I feel comfortable with and who listens to me.

I found a female cardiologist, a rare find, and had my first appointment a few weeks ago. I like her. So far, so good. I felt listened to and comfortable talking. I found that I just couldn't tolerate the dismissiveness of my other doc. As tricky as AF is to deal with, I want a doc who helps me feel hopeful and calm, instead of scared or stupid or dismissed.

This was actually a big deal for me, deciding to look for a better fit.

So now, even having been up much of last night with an episode, I still feel better in general, much as I'd *love* to be free of episodes entirely. I'm only taking 100 mg Flecainide as needed to stop an episode because I found the side effects to be horrible taking it on a daily basis. I'm still sorting out if it actually makes the symptoms worse, like last night.

Recently, we had 2 weeks of horrible air quality where I live because of huge wildfires over 200 miles away. At one point, they said it was the worst air in the world! As a result, I spent a lot of time inside, catching up on computer work, windows closed, air purifier on high, mask on when heading out to run errands. And my heart felt better than it has in ages. No episodes. Go figure. I guess having a good long real rest was good for me.

Some heavy rains cleared the air, a wonderful blessing, and I felt fabulous out on my walk in the park yesterday. I don't go into AF when exercising, but it'll catch up with me at around midnight, like last night.

So it's a typical AF head-scratching place to be, just different, and still better somehow.

The episodes are happening more frequently (2-3 times/week), but I feel better overall, clear-headed. That's the result of minimal meds, I'm certain. The episodes are generally less intense and end faster. Still taking Arnica after the 100 Flec. My EP didn't recommend a 3rd ablation; I'm scheduled to see him in 3 weeks, so we'll see what he thinks then.

We'll see what unfolds with my new doc, but I'm so glad I decided to look for a better fit because I can sense that a whole layer of stress got shed as a result.

Half the battle in dealing with AF seems be discerning what's what without being crazy obsessive...what's making it better? Worse? Now I'm just curious and discerning in my trial and error way of dealing with it. The connection with the docs really is quite important. I'm fortunate to have a pretty large selection of cardios and EPs to choose from where I live.

Writing now in my tired AF hangover state, it feels good to feel more positive in general about it all. Much as I'd love to be free of episodes.

As always, I appreciate the kindness and support of all those who have shared your wisdom and encouragement with me since I joined the forum.

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12 Replies
Kaz747 profile image
Kaz747

Hi Nella, glad to hear you’re feeling positive and taking control of your medical care. It is so important to have a good team around us that we trust. Knowledge is power and empowerment enables us to conquer anything xx

in reply toKaz747

Thanks, Kaz. How are you feeling these days?

Kaz747 profile image
Kaz747 in reply to

Still not as good as I’d like but I’ll get there x

Aprilbday profile image
Aprilbday

Nella is adorable!!!! Too cute! Loved your post. How did you stop the metropol — cold turkey or tapering? Did you feel different?

in reply toAprilbday

Thanks, Aprilbday. Nella is a hoot and does keep me smiling. 😻

I'd been on a low dose of Toprol, only 12.5 mg 1x day, so I cut it in half. The first day of doing that, I felt the difference immediately, like a veil lifting. I remember feeling thrilled to suddenly feel more like myself again. Took it one more day, then stopped it. There were a few times in the following weeks when my heart raced during an episode, but I just took 6.25 mg to calm it down. Eventually, I didn't need it anymore.

I had thought that the lethargic, driving-with-the-brakes-on feeling I'd been experiencing was from AFib. When I'd go for walks, it just felt uncomfortable, draggy, an effort, when I'd always loved exercising. That feeling had been from the Toprol. There had also been a drugged feeling that lifted. Fuzzy-headedness.

It's been worth it to sort this stuff out. I like that my new cardio starts from a place of acknowledging that a lot of dealing with AF is trial and error, that everyone's different in terms of what they need.

CDreamer profile image
CDreamer

Hi Nella - what a fabulous post! The tone is SO different and much more level, I am so pleased for you.

Blessings - CD x

Great post Nella, sounds like you are getting back in control! In the unlikely event Nella has kittens, can I have one (or two) please....😸

in reply to

Thanks, Flapjack. So nice to hear from you. It's not in the cards for Nella to have kittens any time soon, but given that she landed in my life rather miraculously, who knows! If any kittens do appear, I will be sure to save them for you. 😹

CaroleF profile image
CaroleF

Great to hear you sounding in "a much better place" than before. I think having a doctor/cardiologist/EP who you feel is 'sympatique' (not quite the English 'sympathetic', but someone who understands you and really listens to you and who is honest with you) is really important so I'm delighted you've found someone like that. Onwards and upwards now!

Carole

P.S. Nella is adorable!

Hi Nella. Going down the same route as you. Flecainide definitely made me worse and Felodipine filled me with fluid so I have stopped taking both. To start with AF episodes were frequent and very noticeable but lately they are becoming further apart. My hr is usually between 45 and 60 and I’ve started to walk 5 miles a day. Got up at 5am this morning to go and look after the great-grandchildren while my granddaughter went to uni. Tilly has special needs and Arlo has just started school. Monday is swimming lessons and was finally relieved at 6.30. Exhausted but still in nsr at the moment.

Di

jeanjeannie50 profile image
jeanjeannie50

I really enjoy reading your posts, you always make them so interesting. Love seeing little Nella, she has that 'what's going on here' look about her - what a cutie!

Sorry to hear you've been back in AF. Have been that way for 8 days myself now and fed up with it!

Jean

in reply tojeanjeannie50

Hi Jean, so nice to hear from you. And sorry to hear you've been in AF. I can definitely relate to being fed up with it!

After sharing about doing better, coming out of the AF hangover phase of that episode landed me in an episode of feeling fed up with it myself.

Nella has a way of providing comic relief. Those wide eyes, especially when focused on "prey" in the form of a stuffed mouse or the laser pointer, have a way of being highly entertaining.

Wishing you all the best, Jean!

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