tragus stim? Pill in the pocket Flecanide?
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.
For those still reading, potassium can be supplemented by sprinkling potassium chloride salt (available in the cylinder shakers with the rotating perforated plate, just like other table salt) directly onto foodstuffs per taste and habit, and by eating beets, potatoes, figs, avocados, yams...a long list. For animal proteins, chicken, fish.
Just be aware that, while you may have a temporary hypokalemia, you can swing it the other way and put your kidneys in a bind having to rid yourself of a dearth of the stuff in a matter of hours, so be careful. Follow the advice of a competent authority such as a family doctor, dietician, etc. You were hypokalemic maybe for reasons other than missing it in your diet. Shouldn't everyone concerned know why?
@gloaming thanks for adding that. I do work with my doctors, including my nephrologist. Good caution for all.
73 yo male with symptomatic PVCs for 2 yeas. Two ablations in the last year. One did nothing because the site of the PVCs/SVTS could not be identified. The second, more aggressive ablation took 5 hours and left me with a right heart block but little relief from the PVCs. Currently taking Flecainide 100mg BID and diltiazem 120mg BID. I was getting relief on these meds post surgery. Recently by midday palpitations return and persist until after my evening dose. I have tried an additional 25 mg Flecainide as pill in a pocket. Little improvement. PVC burden has been as high as 50%. Have resisted suggestion to try amiodorone. I’m very active working out for at least an hour almost every day. I do not sense a loss of exercise tolerance. In fact I do not feel the palpitations when I am walking, etc. I’m at wits end with the persistent palpitations. Any thoughts?
Sorry for this.
Amiodarone might not work, but it might be worth a shot. You can exist on amio for several years, usually....depends on 'you.' What would it be worth to have six-eight years free of AF, or the palpitations you feel when in AF?
At first, walking and being active, moderately, kept AF at bay. Later, as things worsened, even getting up off the couch was iffy. AF is a progressive disorder, and I'm going to assume, without looking it up, that PVCs probably are the same. It's outside my area of reading.
I had my first episode of AF near the tail end of a maintenance 10K run. The heart is a muscle, and like all muscles, it can get cranky, or even diseased and damaged. Yours has the distinct whiff of being electrically disordered, maybe as a result of exercise, quite possibly due to myocarditis (virus?). Ablation might be out of the running for you, but if you can consult the top EP in the land, would you submit to that person? Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin is about the best there is. He'd take a look at your file and images and maybe say he could try something. It might be worth a shot, one more, and then fall back on amiodarone.
Thanks for your thoughts. It’s worth getting another opinion and I’ve been wanting to visit Austin!
Anyone have experience with dosing Flecainide? I’ve been prescribed 100mg BID for long QRS and persistent PVCs. This kept me symptom free for a few months but I now am getting breakthrough symptoms about 6 to 8 hours after morning dose. Might I increase dose or timing to try to get relief?
There is some empirical evidence to limit the amount of Flecainide a person should take before resorting to other measures. I am not up on that as it isn't in my history. One person on affibers.org has controlled his AF amazingly well by diet, avoiding higher than Zone 2 aerobic exercise, drinking copious quantities of magnesium-laced concoctions, and other dietary measures (limiting his calcium intake is another). He keeps 200 mg of Flecainide on his person per PIP. He has about one breakthrough each year, and that protocol works very well for him. He points out on that forum when dealing with inquiries that people below a certain body weight should not take the upper/max possible dose for Flecainide. I don't recall, sorry, what the numbers are, but it seems to me 150 mg would be the upper limit for someone lighter than about 150 pounds, so the typical teenager/woman.
As @gloaming my know I have communicated with the person on afibbers.org because I do similar approaches (magnesium, potassium via low sodieum V-8, never eat after 6pm, never lie on right side, am careful about exercise/lifting). The Afib Cure by John Day and another cardiologist suggests some of this, and they write that identifying triggers and mitigating risk factors can help a lot. I got back to one episode/year knock on wood. (Steroids trigger me, even 2mg.) I have pill in a pocket diltiazem and Eliquis.