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.

I hear you. So many mysteries, so few anchors, talks of 'triggers', positional, drugs suddenly, maybe for life...oy!

I take it that you're on a DOAC? You should be. ..at least that's indicated for anyone with AF. Anyone proffer a CHADS-VASC score for you? Most cardo/EP use that to determine medication.

Some respond very nicely to supplements of Mg, and I happen to take the '-ol' formulation of CoQ-10 (Costco) because I am told I have to be on a statin for life (MIBI X2, echo, Doppler, angio all said I was at very low risk, no ischemia, minor deposition, but...take the statins. GGrrrrr...!)

An EP will want some stability and will only want to treat you urgently if you have a very high burden and indications of valvular problem onset, englargement, unknown duration of flutter, etc. They'll want apnea controlled first, for example. Valves repaired first. As you would know, mitral prolapse is a distinct problem with AF and its generation of fibrosis.

I had only minor success with manual stimulation of the tragus. There's a video on youtube about doing this to increase tonality of the Vagus nerve. First, lightly grip the tragi with forefinger and thumb, and repeatedly tug upward, but letting your grip loosen and your finger slide off...so only moderate lifting. Do this 20 times. Then, invert thumbs, nails down, and insert them into the ear canal. Repeatedly lift 20 times. Not so comfortable, but not painful. This should help. It sometimes helped to settle my AF, but not often.

For me, eventually, and with a lot of reading, I realized that only an ablation was going to work for me. It did, but not the first instance. Seven months later, a second go did the trick.

As we tell each of our inquirers looking for answers over on afibbers.og, it's very much a unique and individual experience for each of us. About all that's really common is our commiseration and mutual support. Drugs work well, then they don't. Or they make people feel awful, and only a pacemaker or ablation will work....or they won't either. Some can't sleep, some can't eat, some can't walk, some can't stand...it's all over the place.

For those reading this, it's a journey we must all bear, hopefully not alone. It's hard on relationships, it's hard on sleep, on anxiety, and it's usually progressive. So, if you have palpitations that come and go, if you have a firm diagnosis of paroxysmal 'any arrhythmia', get it controlled ASAP to prevent your heart from remodeling itself, which it will do if you stay in arrhythmia too long. Find out what works, and do a lot of reading. In my case, I couldn't wait to have an ablation, and one of them ultimately put me back on my feet. It could work for you.

REPLY

Hello @diane987654321, I would like to add my welcome to Connect along with @gloaming and others. I see that you wanted to post a link and thought I would share the link for you. New members are not allowed to share links for a short period of time to protect our community from spammers and advertisers. I think this is the research you were referring.

-- TREAT AF (Transcutaneous Electrical Vagus Nerve Stimulation to Suppress Atrial Fibrillation): A Randomized Clinical Trial: https://pmc.ncbi.nlm.nih.gov/articles/PMC7100921/

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@gloaming

I hear you. So many mysteries, so few anchors, talks of 'triggers', positional, drugs suddenly, maybe for life...oy!

I take it that you're on a DOAC? You should be. ..at least that's indicated for anyone with AF. Anyone proffer a CHADS-VASC score for you? Most cardo/EP use that to determine medication.

Some respond very nicely to supplements of Mg, and I happen to take the '-ol' formulation of CoQ-10 (Costco) because I am told I have to be on a statin for life (MIBI X2, echo, Doppler, angio all said I was at very low risk, no ischemia, minor deposition, but...take the statins. GGrrrrr...!)

An EP will want some stability and will only want to treat you urgently if you have a very high burden and indications of valvular problem onset, englargement, unknown duration of flutter, etc. They'll want apnea controlled first, for example. Valves repaired first. As you would know, mitral prolapse is a distinct problem with AF and its generation of fibrosis.

I had only minor success with manual stimulation of the tragus. There's a video on youtube about doing this to increase tonality of the Vagus nerve. First, lightly grip the tragi with forefinger and thumb, and repeatedly tug upward, but letting your grip loosen and your finger slide off...so only moderate lifting. Do this 20 times. Then, invert thumbs, nails down, and insert them into the ear canal. Repeatedly lift 20 times. Not so comfortable, but not painful. This should help. It sometimes helped to settle my AF, but not often.

For me, eventually, and with a lot of reading, I realized that only an ablation was going to work for me. It did, but not the first instance. Seven months later, a second go did the trick.

As we tell each of our inquirers looking for answers over on afibbers.og, it's very much a unique and individual experience for each of us. About all that's really common is our commiseration and mutual support. Drugs work well, then they don't. Or they make people feel awful, and only a pacemaker or ablation will work....or they won't either. Some can't sleep, some can't eat, some can't walk, some can't stand...it's all over the place.

For those reading this, it's a journey we must all bear, hopefully not alone. It's hard on relationships, it's hard on sleep, on anxiety, and it's usually progressive. So, if you have palpitations that come and go, if you have a firm diagnosis of paroxysmal 'any arrhythmia', get it controlled ASAP to prevent your heart from remodeling itself, which it will do if you stay in arrhythmia too long. Find out what works, and do a lot of reading. In my case, I couldn't wait to have an ablation, and one of them ultimately put me back on my feet. It could work for you.

Jump to this post

Thank you for the reply Gloaming. I'm on Xaralto, those pills look like dog treats. I didn't know about the manual tragus technique, I'll give it a try when I'm in bigeminy on my walk. I had an exciting echo in July, severely enlarged left atrium, 4.8 cm diameter, moderate mitral regurg, EF 55. My echo this past Monday showed left atrium 4.6 cm (still too big), minimal atrial regurg and EF of 69, so things got better. My left atrium was not enlarged in January 2024, I know this because I teach ultrasound to NP students and let them use me as a model. I think the time between getting Covid and Atrial Fib my heart was pretty sick, I don't think I was in atrial fib since I wasn't having chest pain but something ugly was going on. Given my atrial ectopy and enlarged left atrium I'm sure I'll be on a DOAC for awhile. I hope my PVCs chill, sometimes they feel like they are ripping my pericardium. I fired my first cardiologist, who was an EP, because he spent 8 minutes with me at first appointment, documented a full physical exam when all he did was check my pulse for 3 seconds and was walking out the door in the middle of my question about my management. My second cardiologist, who I've had one telehealth visit with, was a lot better. He had read my chart prior to meeting with me and listened when I told him where my chart got the story wrong. It has been interesting, in a bad way, seeing how chest pain and palpitations mess with my mind. I deal with anxiety by reading fun cardiology journals and textbooks! Boy that EP field is moving fast.

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@johnbishop

Hello @diane987654321, I would like to add my welcome to Connect along with @gloaming and others. I see that you wanted to post a link and thought I would share the link for you. New members are not allowed to share links for a short period of time to protect our community from spammers and advertisers. I think this is the research you were referring.

-- TREAT AF (Transcutaneous Electrical Vagus Nerve Stimulation to Suppress Atrial Fibrillation): A Randomized Clinical Trial: https://pmc.ncbi.nlm.nih.gov/articles/PMC7100921/

Jump to this post

Yup, that is it! Thank you for posting it. I totally understand the restriction.

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@diane987654321

Yup, that is it! Thank you for posting it. I totally understand the restriction.

Jump to this post

@diane987654321, you don't mention your age or your CHADS score, or how long your afib episodes last.

I have had mostly once/year episodes since 2015 so the scenario is a little different. It has not progressed knock on wood. My episodes always involve heart rate around 190-200 with big fish flopping around, feeling faint, chest pressure etc. Until the last one I go by ambulance but the last time I drove myself and I am going to try staying home if my bp is okay. My bp is naturally low so I am hard to treat, hence the hospital where they can do IV hydration.

I take magnesium (600mg) at night and drink 8oz. low sodium V-8 which is high in potassium. And take calcium for bones. I declined blood thinners 10 years ago and finally got Eliquis for "pill in a pocket" if an episode goes on too long (>5 hours I guess), which I have not used, and have pill in a pocket diltiazem.

Eating a big meal with a fizzy drink like beer, then reclining, would trigger afib for me right now if I did it. Over time we learn some things to avoid. I do not eat after 5 or 6 and don't recline. Also avoid carbonated drinks later in the day. I actually aborted an episode within seconds by sitting up straight with food still in my tummy!

I did these things partly thanks to afibbers.org which @gloaming posts on (he knows his stuff!). Last year I bought "The Afib Cure"- a great book- one of the authors, John Day MD, also has a website, blog and newsletter. You might be able to at least mitigate if not cure. I would say that is the spirit of the book despite the title.

COVID messed with my heart too. So did Paxlovid. I am unusually scared of COVID! I landed in the ER twice and then the hospital with steady runs of PVC's if I moved. Oddly I was fine in bed. It doesn't seem to have worsened my overall picture the way it has for you and I am sorry you are dealing with this!

ps @gloaming I seem to remember one type of afib is worsened by beta blockers. Was it vagal or adrenal?

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Thank you for your comments windyshores. I'm 63. I've only had two episodes of atrial fib. The first one was in July, I had two shocks at 200 and 240 Joules that failed then was started on amiodarone IV after magnesium 2 grams IV and diltiazem 10 mg IV. I converted about 6 hours later. I was sent home on amiodarone which dropped my heart rate into the 30s while walking around so that got stopped. My second episode was in August. I took the metoprolol right away, about 45 minutes later the chest pain got horrible. I waited about an hour and was debating going to the ER. I still had my oral amiodarone, and even though I know it doesn't have a fast onset of action I took 200 mg. It was either a great placebo, it worked, or I was going to go into sinus anyway. I converted about 2 hours after the amiodarone. Interesting that you are doing the pill in the pocket Eliquis. I read a few studies where they tried that and it seemed to work. They were doing daily Kardia scans in one of the papers, and pulse checks in another, which seems risky. I'm too chicken to go off xaralto since I have a floppy left atrium and so many PACs. I really don't want to stay on it for a long time! My CHADS score was 3, I have hypertension that has gotten so much worse since this all started.

What kind of magnesium are you taking? I'm tolerating the 240 mg of the magnesium glycinate so far. Interesting reading how positional your PVCs were.

I took paxlovid too, I was antigen negative by day 4 and felt great. Then came the rebound and another 5 days of fever. I'm wondering if I should take it for 10 days if I ever get that cursed plague again. I think it is vagal afib that beta blockers make worse. 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!

I put a hold on the Afib cure book at my library. Thanks for the suggestion.

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@diane987654321 I believe I have both vagal and adrenal afib but mostly vagal. Heart rate in the 30's for you was scary!

I am curious about your treatment in July. Did the ER wait some hours before doing the shocks? I have never had a shock but find that some ER's are more patient, I guess you could say, than others in terms of how long to wait to do a cardioversion. I have never been shocked or given anything besides a diltiazem drip One hospital put me in the ICU due to low bp and was too conservative I think with the diltiazem so it lasted 7 hours. One ER started talking cardioversion after two hours.

One time paramedics gave me a full bolus of diltiazem despite me saying to give me half, and my bp went to 60/30. Lots of variation. At this point I know enough and declined a second bolus in hospital and told the doc it would drop my systolic 60 points. They always ask if I am in the medical field. No, I am an experienced patient!

I looked up amiodarone and it says it is used for ventricular arrythmias. Is that true? Does it reduce your heart rate?

I take mixed Magnesium- Country LIfe "Magnesium" ( oxide, aspartate, taurinate, citrate)- usually 600mg and occasionally 900mg. I take it at least 2 hours away from calcium.

What do you do for high blood pressure? Is your afib considered valvular?

My EKG and stress test indicate "Left ventricular hypertrophy. ST-T wave
abnormality." but the echocardiogram doesn't show LVH. I have minor regurgitation in 3 valves.
Ejection fraction 65%. It has been 6 months since my last episode and I am praying to make it a year. I know this may progress and knock on wood a lot. Good luck!!!!

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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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@windyshores

@diane987654321 I believe I have both vagal and adrenal afib but mostly vagal. Heart rate in the 30's for you was scary!

I am curious about your treatment in July. Did the ER wait some hours before doing the shocks? I have never had a shock but find that some ER's are more patient, I guess you could say, than others in terms of how long to wait to do a cardioversion. I have never been shocked or given anything besides a diltiazem drip One hospital put me in the ICU due to low bp and was too conservative I think with the diltiazem so it lasted 7 hours. One ER started talking cardioversion after two hours.

One time paramedics gave me a full bolus of diltiazem despite me saying to give me half, and my bp went to 60/30. Lots of variation. At this point I know enough and declined a second bolus in hospital and told the doc it would drop my systolic 60 points. They always ask if I am in the medical field. No, I am an experienced patient!

I looked up amiodarone and it says it is used for ventricular arrythmias. Is that true? Does it reduce your heart rate?

I take mixed Magnesium- Country LIfe "Magnesium" ( oxide, aspartate, taurinate, citrate)- usually 600mg and occasionally 900mg. I take it at least 2 hours away from calcium.

What do you do for high blood pressure? Is your afib considered valvular?

My EKG and stress test indicate "Left ventricular hypertrophy. ST-T wave
abnormality." but the echocardiogram doesn't show LVH. I have minor regurgitation in 3 valves.
Ejection fraction 65%. It has been 6 months since my last episode and I am praying to make it a year. I know this may progress and knock on wood a lot. Good luck!!!!

Jump to this post

Six months is good! I hope yours never comes back! 65% is a terrific ejection fraction.

No one has called it valvular afib. I think I had the substrate to have afib given my low heart rate and then my covid caused heart inflammation kicked it off. I think Covid caused the left atrial enlargement which made my mitral valve leak, and probably my decades of frequent PVCs set the stage. I've been struggling with accepting the fact I won't figure this all out, really bugs me not to know how this all happened. I have unprovable theories galore.

I was on lisinopril, prior to covid it was 10 mg. I was up to 40 mg last week and was nowhere near target. My internist switched me to Voltaren 160 mg this week. I'm not optimistic. I want to add a low dose of spironolactone but he is all excited about it causing high potassium with the voltaren. My Mom had uncontrolled hypertension for decades, she saw a nephrologist who added 12.5 mg spironolactone about 20 years ago. She is never over 130/80 now, and she 87!

Amiodarone is a dirty drug. It is FDA approved for ventricular rhythms, and it does work, but is used off label a lot for atrial fib. You can use it with people who have coronary artery disease so Cards likes it. In the hospital in July, about 2 hours after I converted, my heart rate was dropping in the low 40s so they had to stop it. They started me on 200 mg a day orally when I was discharged, I was down to 100 mg/day after a few days then 50 mg, then 50 mg every other day and finally gave up when my HR was 36 while grocery shopping. I think it was starting to bother my lungs too. I think if I ever have to go on amiodarone again I'll start at 50 mg a week.

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@diane987654321

Six months is good! I hope yours never comes back! 65% is a terrific ejection fraction.

No one has called it valvular afib. I think I had the substrate to have afib given my low heart rate and then my covid caused heart inflammation kicked it off. I think Covid caused the left atrial enlargement which made my mitral valve leak, and probably my decades of frequent PVCs set the stage. I've been struggling with accepting the fact I won't figure this all out, really bugs me not to know how this all happened. I have unprovable theories galore.

I was on lisinopril, prior to covid it was 10 mg. I was up to 40 mg last week and was nowhere near target. My internist switched me to Voltaren 160 mg this week. I'm not optimistic. I want to add a low dose of spironolactone but he is all excited about it causing high potassium with the voltaren. My Mom had uncontrolled hypertension for decades, she saw a nephrologist who added 12.5 mg spironolactone about 20 years ago. She is never over 130/80 now, and she 87!

Amiodarone is a dirty drug. It is FDA approved for ventricular rhythms, and it does work, but is used off label a lot for atrial fib. You can use it with people who have coronary artery disease so Cards likes it. In the hospital in July, about 2 hours after I converted, my heart rate was dropping in the low 40s so they had to stop it. They started me on 200 mg a day orally when I was discharged, I was down to 100 mg/day after a few days then 50 mg, then 50 mg every other day and finally gave up when my HR was 36 while grocery shopping. I think it was starting to bother my lungs too. I think if I ever have to go on amiodarone again I'll start at 50 mg a week.

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Spironolactone was a miracle drug for my mother. She made it to 96! She took that and amlodipine and her bp was pretty good.

I have theories about my afib's onset as well. I had a severe electric shock in 2013. Lots of stress when my daughter was hit by a car and almost died of a head injury. During her recovery I had breast cancer and went on a drug that eliminated all estrogen in my body. Finally, I flew on an urgent basis when same daughter had mono on the opposite coast, took 1/2 sudafed, was dehydrated and focused on her. I went to bed in her apartment, and something suddenly was terribly wrong with my heart. I walked out to the street and a fire truck was at a red light. I knocked on their window and asked where the nearest hospital was because something was wrong with my heart. They jumped out and treated me on the side of the street! What are the chances a fire truck with paramedics would be there at that moment?

You have a complicated situation to deal with. High bp, low heart rate, COVID. Let's hope we get through another season without getting it!

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