tragus stim? Pill in the pocket Flecanide?

Posted by diane987654321 @diane987654321, Oct 25 12:29pm

Hi All,
I'm so glad I just found this group! Briefly, I'm a retired ER physician with decades of asymptomatic bradycardia, PVCs with exertion with decent exercise tolerance until my first bout of Covid in June. Pretty sure I had mild myocarditis that kicked off atrial fib in July. I've been doing a deep dive into cardiology and came across the TREAT AF trial. Full text is online but I'm brand new here so I can't post a link. They used ear clips attached to basically a tens machine to stimulate the vagus nerve via the ear with impressive reductions in incidences of Afib. I gave it a try after my second episode of Afib in August. I pretty much followed their protocol for 2 weeks. Since then I've not had any recurrences, but my recent ZIO patch said I have a PVC burden of 3.8 % (was 1% 10 yrs ago) and a PAC burden of 6.8% with an average heart rate of 42, which is lower than my old baseline of about 50.

My second episode of Afib in August acted like vagal Afib. It happened after my most active day since before Covid, I had a big dinner with a 1/2 can of beer and was reading a book. The TREAT AF study didn't break down their patients into Vagal or not. I didn't have any adverse reactions while doing the vagal stim, it didn't decrease my heart rate while using it or after. I'm curious if anyone here tried vagal stim and if they have vagal Afib.

I bought a Wellue 24 hour monitor that I've been wearing while doing my daily walks for the past couple of weeks. It does an okay job counting my PVCs. (Helps to know how to read ecgs, the AI isn't always accurate). I'm thinking of restarting the vagal stim to see if it decreases my PVCs but I stopped doing it in early September because I seemed to go into a period of really high BPs and painful PVCs at rest. I have no idea if the vagal stim had anything to do with it, my guess is it didn't. I got the Novavax vaccine and my exercise tolerance got so much better starting about a week later.

I've been sporadically taking magnesium glycinate 240 mg, I decided to take it everyday for a few weeks along with Co-enyzme Q and see if that decreases my ectopy. I don't have an appointment with EP yet, I really don't want to rush into it since my echo improved from July and my exercise tolerance is improving. I'm pretty sure they will want to ablate something!

After my August Afib I talked Cards into giving me diltiazem and flecainide in case I go into Afib again since the metoprolol seemed to induce wicked chest pain. Does anyone have any personal experience using it? I flunked my stress echo this week on account of my multiform PVCs and BP of 220/105. My new Cards wants to rule out ischemia before I take flecainide, but hurricane Helene messed up the nuke med supply chain so that won't be for awhile.

I want my boring old heart back!

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@gloaming

Diane said:
'...It was either a great placebo, it worked, or I was going to go into sinus anyway...."
The latter. When one is paroxysmal, it comes and goes on its own, sometimes with the help of meds, sometimes only with a coupla decent belches. Seriously. For me, going to bed at night, having that first twitch about six minutes later, and when I aroused for a minute and 'listened', my heart was in NSR without fail. 100% reliably. It took a couple of months, but eventually I came to rely on that first-jerk reliability and was so grateful. My sis-in-law goes to bed and that's when her AF starts. And her story is shared by probably 20% of all AF sufferers (admittedly a guess).

When I relapsed about six months after my first ablation, I had two 220mg amio left from a previous scrip...my first ablation failed inside of six days and I was admitted. Between the ER internist and my EP, they elected to give me 'the big hammer'. I went on 400mg BID for a week as a loading regimen, then 200 BID for four weeks, then a two week taper at half that rate. It worked, and I was good until the two month mark, had more AF, told to go on 25 mg metoprolol BID, which was good until the event just two months later that I started out describing. I took the 400 mg total, and it didn't touch the rate or rhythm. Told to go home and hope it would revert with metoprolol, which I had also. I was back in NSR inside of four hours, albeit with about 75 mg in me from a drip while in ER. So, yes, a drug will help to tip you, but you go home in VTac or AF after they shrug and invite you back if it won't subside inside of 24 hrs, and while you're watching TV or on the computer three hours later, it reverts. Happened to me several times. I had four cardioversions, none of which lasted for more than 16 hours, last one was a whole 20 minutes. The heart has a mind of its own, lemme tell ya. 😀

I do find it very encouraging that your atrial enlargement reversed somewhat when you went for long periods free of ectopy. The literature is mixed on that, and the very wonderful AF clinic outreach nurse who held my hand several times when I was in ectopy, this over the phone, told me that my LA would probably not reduce in size over time. Others, like you, insist that theirs has, or did. So, thank you for including that important information. I have been in NSR for 20 months after the second ablation, and have felt my heart improving slowly every since. Just recent went on a hike with my wife which included 250 steps on a bluff overlooking the ocean nearby, and I haven't felt the strength like that in over two years. It's marvelous. Slow...for me...but marvelous to have it back (used to be a competitive runner.

About amiodarone. It's a big hammer, but comes with glaring caveats. I have never read, nor been told, that it is to be used for only certain arrhythmias, and certainly not just for ventricular arrhythmia, windy. I was in AF and it took me, with one single loading dose of 400mg, out of my AF inside of about 10 hours. I awakened, after some melatonin and some zopiclone, and about five hours of sleep (I was a mess sleep-wise by then), to find my heart back in NSR, and it never went out again until about three months later, a month after stopping the amio.

This is long, but sometimes anecdotal information is transferrable...amiodarone never impeded my normal range of BP. Only metoprolol did that, and it does for a good many users with ectopy when their incidence rises and the order is to increase the dosage. In my case, when I went to the ER six days out in family-doctor-discovered AF, my HR was 30, and one time when I was talking to my wife, the nurse came running to find me alert and conversing. She couldn't believe it. She held out her forefingers yay far apart and said they had watched me flatline for that long on their desk monitor. That was six days post-cath, with 50mg metoprolol prescribed BID. It was far too much, but....who knew!

Diane said: "...From my readings in this archive, vagal afib is far more common than the literature would suggest. Or the vagal afib people are so outraged by it they go looking hard for answers!..."

Maybe, yes, probably, but I think there is likely more of a dual nature to most cases of AF, not that most of us have one 'type' and not the other. I think the heart reacts to changes in Vagus tonality, but it also reacts to rushes of epinephrine by changing its substrate electrical properties. I mean, if the pulmonary vein ostia, say, are infiltrated with atrial endothelium, the atrium WILL respond when electrical impulses emanate from the veins because of that intimate incursion. Well, why are we not in ectopy constantly then? Why paroxysmally? The answer must lie in changes to the heart's state or condition, and that means what's happening around it and to it. So, I think that too much stress, poor sleep, finding out your sister was badly hurt, or that your bank account if overdrawn, may put you into AF as readily as awakening with a start and having to leap out of bed will when an alarm signals an important event is pending. Or, that belching to relieve stomach distension (one of my triggers was distension, I believe) changes Vagal tonality and boom...yer in AF inside of five seconds.

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@gloaming glad to read about your cliff walk!

And I forgot to mention belching so glad you did! I stopped one short but intense afib episode with Gas-X (simethicone)!

And yes to alarms and stress. One episode was triggered by my kid's insulin pump alarm at 1am. Stress was described above.

I agree the heart has a mind of its own but over time we do make progress figuring out what might upset it.

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Doctor, thank you for taking the time to share this information with all of us. Myself, I had never heard of this trial, but will read more about it. I do wish you well and hope that you can get your boring old heart back.
I have been taking magnesium citrate 400mg/day for the past year or so and would say it has been a help. It seems to be calming.

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I appreciated your comments in your documentation I just saw. You asked if anyone was familiar with Metoprolol. I've been on it for several years before Afib which was diagnosed in the past couple of years. When I took it, always in the AM and too often driving en route to my office, I'd suddenly feel as if I was going to faint. I'd head off to the closest ER's as a result in a panic of course. I eventually cut them back to 3 times a day instead of a single dose. Less RX at a time . The symptoms disappeared. When I started having other symptoms that led to the Afib diagnosis, I was put on couple of other Rx in addition to the Metoprolol. But it wasn't as working as it should. My current cardio MD told me try taking it all at once. That made a positive difference yet no issues with it that I had before. I expect this won't surprise you as an MD, after participating in Mayo Connect, my conclusion is there are such different effects for different people let alone possibly factoring in timing.

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I believe I have vagal AFib.....always came on at night...woke me up about the same time(1200) after going to sleep....my cure had been cardio version...pill in the pocket stopped working....but my last cardio zap was horrid....so after reading comments/ suggestions on this discussion group...I stopped my glass of wine ...started eating my evening meal @4 PM...no food after 5....started magnesium.. and have not had an incident since. I am 77 so just my husband and I at home and he does not mind the new eating regime....I like only having two meals a day....really enjoy breakfast....I recognize we are all different...but I think it was @gloaming on this page who gave that advice and it is working for me....

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@wildacres100

I believe I have vagal AFib.....always came on at night...woke me up about the same time(1200) after going to sleep....my cure had been cardio version...pill in the pocket stopped working....but my last cardio zap was horrid....so after reading comments/ suggestions on this discussion group...I stopped my glass of wine ...started eating my evening meal @4 PM...no food after 5....started magnesium.. and have not had an incident since. I am 77 so just my husband and I at home and he does not mind the new eating regime....I like only having two meals a day....really enjoy breakfast....I recognize we are all different...but I think it was @gloaming on this page who gave that advice and it is working for me....

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@wildacres100 that is what I have been doing. Early dinner, no large meals, magnesium, keeping stress down as much as possible. Also maybe add some low sodium V-8 for potassium. Best to have at different times of day but I have it in the morning and magnesium (600mg) in the evening.

"The Afib Cure" by Day and another cariologist is a good resource. John Day MD has a website too. Knock on wood I am still having one episode per year or even every two years, and still working on identifying triggers. I have spinal fractures and lifting is another trigger I have identified. Also GI gas (belching helps) so I use simethicone at times (Gas-X).

Different for each of us! I know this can progress and am not over confident. I have been doing all this for 10 years and know that eventually it may not be enough but for now....

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I would do more research on Flecidine before you want to go on it .
Are you on blood thinner for A - fib ?
My sister had had it 8 years and finally did ablation w/ loop recorder last Sept (2023).
She was on a lot of meds for High BP / cholesterol and A fib that needed to be tweaked through the years.
Then they weren’t helping as much so ablation did .
Well 5 weeks ago out of no where. She was getting up after reading a book in bed and went yo the ground !
She had a stroke and was rushed to hospital 🏥. Numbness and inability to use left arm and leg .
Her face and speech were not affected. She spent a 5 days in ICU and 10 in hospital with PT & OT .
She’s been home doing PT & OT and has gone from not being able to stand on her own to walker to cane already. The leg 🦵 is taking longer than arm .
Her BP was super high like yours went to and caused walnut size bleed 🩸 in brain ( thus the moderate stroke ).
She’s on all the right meds and it still happened!
Me , I have 7 horrendous chronic gastrointestinal disorders that are debilitating daily and PVC’s on and off most of my life . Had 2 / 2 hr incidents of A fib ( I feel everything when it comes to heart ♥️), abd that was so much different than PVCs or PAC’s .
I was given pill in pocket Flecidine but only took it once . I read if you are in A-fib you don’t want to take that drug . Can make it worse.
My BMP went to 156 top end .
Thank God it’s only happened 2-3 x in 2 years. My PVC’s I take magnesium and Q-10 too as I get them .
My body can barely handle food . I’m always in distress.
I’m 63 just recently and have run the gamut of Dr’s and tests and supplements and everything.
It’s so hard to live this way . I can barely even leave my house now .
I look young for age but feel 90 .
No hope in sight and I’m only on anti anxiety med and Ambien ( lots of Pepto) .
It’s getting so much worse too .
I’m starving all day but blowing up if I eat something even small ( always healthy). I deep wet belch over 700-plus x a day .
Life is really hard and getting to wits end .

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@rozy288

I would do more research on Flecidine before you want to go on it .
Are you on blood thinner for A - fib ?
My sister had had it 8 years and finally did ablation w/ loop recorder last Sept (2023).
She was on a lot of meds for High BP / cholesterol and A fib that needed to be tweaked through the years.
Then they weren’t helping as much so ablation did .
Well 5 weeks ago out of no where. She was getting up after reading a book in bed and went yo the ground !
She had a stroke and was rushed to hospital 🏥. Numbness and inability to use left arm and leg .
Her face and speech were not affected. She spent a 5 days in ICU and 10 in hospital with PT & OT .
She’s been home doing PT & OT and has gone from not being able to stand on her own to walker to cane already. The leg 🦵 is taking longer than arm .
Her BP was super high like yours went to and caused walnut size bleed 🩸 in brain ( thus the moderate stroke ).
She’s on all the right meds and it still happened!
Me , I have 7 horrendous chronic gastrointestinal disorders that are debilitating daily and PVC’s on and off most of my life . Had 2 / 2 hr incidents of A fib ( I feel everything when it comes to heart ♥️), abd that was so much different than PVCs or PAC’s .
I was given pill in pocket Flecidine but only took it once . I read if you are in A-fib you don’t want to take that drug . Can make it worse.
My BMP went to 156 top end .
Thank God it’s only happened 2-3 x in 2 years. My PVC’s I take magnesium and Q-10 too as I get them .
My body can barely handle food . I’m always in distress.
I’m 63 just recently and have run the gamut of Dr’s and tests and supplements and everything.
It’s so hard to live this way . I can barely even leave my house now .
I look young for age but feel 90 .
No hope in sight and I’m only on anti anxiety med and Ambien ( lots of Pepto) .
It’s getting so much worse too .
I’m starving all day but blowing up if I eat something even small ( always healthy). I deep wet belch over 700-plus x a day .
Life is really hard and getting to wits end .

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Thanks for the reply rozy288. I’m sorry to hear about your struggles. Gut problems are so hard. Eating should be a joy. Head bleed versus clot, feels like walking a tight rope. I’m glad your sister is improving. I’ll get an ablation before I have to go on chronic flecainide! Thanks for the reminder about CoQ. I’m going a week long experiment taking magnesium and CoQ to see if it decreases my PVCs. They have gotten more annoying.

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Some do poorly on flecainide, and sometimes only because the dosage was inappropriate. The dose varies according to body weight. I'm not well read on flec, but I read posts by those who have a lot of history with it, including using it only as PIP. When used that way, my recollection is that it works quite well. Again, though, dose-dependent, and then weight dependent.

If anyone happens to be on a statin, CoQ10 is something that one should consider supplementing. I don't know why people aren't routinely given that information, but I learned it from my dad when he began to take it, and went and found out that the drug inhibits the body's own production of CoQ10.

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@diane987654321

Thanks for the reply rozy288. I’m sorry to hear about your struggles. Gut problems are so hard. Eating should be a joy. Head bleed versus clot, feels like walking a tight rope. I’m glad your sister is improving. I’ll get an ablation before I have to go on chronic flecainide! Thanks for the reminder about CoQ. I’m going a week long experiment taking magnesium and CoQ to see if it decreases my PVCs. They have gotten more annoying.

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Google Heart Calm
It’s 3 magnesium’s, with Q-10 and some potassium.
I buy direct from site for 7-8 years now .
It helps the pvcs a lot . I take two if they start .
http://www.vitalbiologics.com
Made in USA , 90 caps $30 free shipping. The only product they make .
You can take up to 3 if needed at once .
I hope ablation goes well and cures you .
I need a miracle.

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@rozy288

Google Heart Calm
It’s 3 magnesium’s, with Q-10 and some potassium.
I buy direct from site for 7-8 years now .
It helps the pvcs a lot . I take two if they start .
http://www.vitalbiologics.com
Made in USA , 90 caps $30 free shipping. The only product they make .
You can take up to 3 if needed at once .
I hope ablation goes well and cures you .
I need a miracle.

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Heart Calm has 300mg magnesium, 99mg potassium, 100mg taurine, and 30 mg CoQ10. The potassium is only 2% of the daily requirement. I am glad it helps you @rozy288

I like to take supplements separately. I take 600mg of a mixture of magnesium similar to Heart Calm. LOw sodium V-8 has 850-1250mg per serving of potassium vs 99mg in Heart Calm. I take 100mg CoQ10 vs 30 in Heart Calm. I am small and low weight.

I bought taurine (Pure brand) 500mg vs Heart Calm's 100mg but haven't taken it yet. For that I would prefer to start lower before doing the 500mg. Taurine is also suggested by some for tinnitus, another problem I have.

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