Well, despite trying everything from magnesium taurate to arginine, vitamin C and D and everything in between. I still get nightly episodes of afib that wake me usually between tow to three hours after going to bed! I can always self terminate these episodes using a variety of vagal manoeuvres but I’m truly exhausted! I’m lucky if I get four hours of sleep a night! Once I’m up and about the following day I don’t get a sniff of afib not even a skipped beat! I’ve tried eating earlier/smaller portions/no carb/low carb/no alcohol/a little alcohol/no caffeine/regular caffeine and everything else! The horrible EP I met with in the West Midlands just point blank dismisses vagal afib out of hand and just says I need an ablation that he delights in telling me may make symptoms worse or not work at all, plus once done it’s irreversible! For me there’s a definite connection between my gut and the dreaded afib! Now, they want me to go back on beta blockers and double up on Flecainide. Tbh I’m on a stupidly low dose at the moment of 25mg in the morning and again in the evening along with 100mg as a PIP which I seldom need as I’ve learnt how to end episodes with 95% success rate usually in around 30 mins but it’s not ideal at 3.00am lol! I tried taking a whole tablet, 50mg of Flecainide one evening about 30 mins before bed and it just sent me into tachycardia, some I’m reluctant to increase my dose, yet alone go back on beta blockers which are well documented as not a good treatment option for vagally induced afib. Not expecting a magic bullet fix here but just desperate for some sleep! If anyone relates to this please share your experience along with possible ways to manage this vile condition!
Nightly afib!: Well, despite trying... - Atrial Fibrillati...
Nightly afib!
I forgot to add, as a last desperate attempt to silence Afib and quieten my gut, I’m giving the dreaded proton pump inhibitors another go!
Try transdermal Magnesium, the 31 percent one, everyday for a couple months. Your magnesium levels are too low, probably, just like mine, and everybody here. It takes months to bring magnesium levels by oral ingestion. Do not use magnesium oxide. It is useless.
I take magnesium taurate with a 44% absorption rate now, after previously taking low absorption magnesium oxide. Still doesn’t explain why it always happens when asleep and after eating though, I’m convinced it’s related to my stomach? I’m hoping now I’ve switched magnesium that my symptoms may improve?
Certainly important to deal with any reflux issues.
Hello, I had experience with proton pump inhibitors as prescribed by my doc. However, sometimes heartburn is not caused by too much acid but by too little acid. If you've not had a good result with the PPI you might want to try rajing a goid digestive enzyme with meals instead. Made a difference for me.
Hello there! My case is very, very similar to yours! During the day - nothing! When I go to bed and am not asleep - nothing! As soon as I am asleep, AF starts from itself. How do I know? In couple of occasions I was woken shortly after I got asleep and was ALWAYS in AF. As a difference to you, I am almost symptom free, so it never wakes me up at night. When I wake up from myself, I am always in AF, which I correct within seconds, with 100%. But, after I get asleep again, AF returns, also with 100%, lol!
Since you are so keen to research, here something you may find for interesting. When a heart of a person who has never had AF is transplanted to a person who also has never had AF, the receiver of the heart develops AF in some 40% of the cases. Puzzling, isn't it!? I read about it long, long ago, so can not quote the source, but I believe that it still can be found in the internet (has nothing to do with the jabs, so probably not censored, lol!)
I wish I could say the same regarding symptoms, but sadly I definitely feel it when it wakes me but I’m getting more adept at terminating the episodes!
Absolutely me to a T. 2 to 3 am wake up and so exhausting, but fortunately not every night. I take my 50mgs of Flecainide at 8am and 8pm and eat as early as possible. During unsettled times I try to go to sleep well propped up and gradually slide down. I’m sorry I haven’t any more to add apart from shed loads of empathy.
It truly is exhausting! When ever I get a very rare afib free night of sleep I’m like the six million dollar man the next day!
Sounds very much what I was like with undiagnosed Sleep Apnea. I have normal BMI so wasn't ever thought a possibility, but when discovered it was severe ( 68 episodes an hour) and the EP said it was very likely to have been the cause of the AF initially.
I’ve considered this and also like yourself I’ve a normal BMI and don’t snore but I do often feel that my mouth is very dry suggesting I breathe through my mouth rather than my nose? My understanding is that during sleep apnea you basically stop breathing, is that correct? Whenever I stay at my partners house I ask her if I snore and she says no but she does say I breathe very quietly?
I have always been a mouth breather and probably the root of the problem according to some reports. I know snoring is usually associated with sleep apnea but not always! Yes a sleep apnea episode does make your heart stop and after a while it takes its toll and that is what apparently causes the start of AF. In my case a bad episode would wake me up suddenly and that is when my blood pressure was through the roof and for years thinking it was because I had bladder issues. Its a simple test to see if you have sleep apnea, a questionnaire initially then followed by a night study all easy and painless.
How did you manage to get your final diagnosis for this? Im guessing your initial testing was all heart related then some reason switched to sleep tests..
youtube.com/watch?v=vwPBmE8... This is a video I was asked to do, it might explain it all a little better!
Well it doesn't look like the video I sent is working. My sleep apnea was never discussed by three consultants and three doctors it was only when I posted on this site my concerns someone suggested I should get a test done. I went to the doctors and suggested I might have sleep apnea so I was given an initial questionnaire and having scored highly was referred to the sleep clinic and that is when they said I was having 68 episodes an hour and given CPAP ( Controlled airways ) straightaway and now sleep like a baby.
Do you have a link to the vagal manoeuvres? I would like to try these too.
Does your AF seem to flare when you have a lower resting HR?
Yes, my HR dips before a flare up of AF, vagal manoeuvres that work for me are immersing my face in a sink full of cold water, going to the bathroom and sitting on the loo as if you need a number two lol, as the straining sensation acts on the vagal nerve, graphic but you asked lol! And undoubtedly for me the number one thing that works is to elevate my HR higher than it is in afib by running up and down the stairs or jogging on the spot, anything to raise my HR, as it slows it spontaneously clicks back into NSR. This is my nightly routine these days and it’s positively exhausting!
Not for me to say but a pacemaker would fix that! Never mind the cause, AF can be set off by too low heart rate. Perhaps since Flecainide raises your HR a small dose plus a small dose of bisoprolol or diltiazem might work (unless you tried that already), seems to help a lot of people! Disturbed nights must be worse for you than a very low dose of medication?
I have tried all of those things and nothing ever works for me. How long do you run up and down the stairs, also strain on the loo and put your face in cold water(does it have to be ice cold). I kept repeating those three actions for half an hour and gave up so back to PIPs bisopropol and flecanaide which usually but not always work - then it gets scary and there's noone out there to help you these days. In the old days they used to keep you in hospital until they sorted you out. Now they just bring your heart rate down and discharge you.
Well, I can only speak from personal experience, sometimes just one of those things work for me, sometimes all three and sometimes I convert in under ten minutes but this morning took 30 mins. I’ll sure one day none will work but until then I’ll keep on trying! Yes, cold water, full immersion of your head so you gasp at the shock! As for running up and down the stairs or running on the spot, I pretty much do it until I can’t manage more. Usually my heart by this time is circa 130-140 and as it comes down, 9 times out of 10 I revert to NSR. One more trick that may or not work is sit and blow as hard as you can into a clenched fist or better still an empty syringe until you feel like your face will burst lol and then immediately elevate your legs and sit back up, may take several goes but does work! Good luck, I’ll update you with any other manoeuvres I find! Like I said, I’m woken every single night with full on afib…… truly exhausting!!
Thanks for that Motov. I hope you get some relief soon. I can see why we afibbers have a potential for dementia as going to bed is a nightmare of anxiety. I find it difficult to take my attention away from my heart area and that causes anxiety and can trigger the afib. I spend hours trying to redirect my thoughts elsewhere. Maybe I should take a course of sleeping pills.
You might have found a rare bad egg, but I would hope the cardiologist you saw is not stupid, myself. He may have a poor bedside manner and be too busy for his own good, though. In general, their incredibly extensive training, long experience over thousands of patients lets them know more than anyone else can ever know about what the best treatment is for an individual. I'm perhaps naive, okay, but I continue have the greatest respect, in general, for heart specialists.
Like you, I have gastric issues and a sliding hiatus hernia. I, too, get conduction problems (not often AF), after lying down in bed. Like yours, my cardiologist also dismissed the possibility of "vagal AF". He agreed vagal irritation does sometimes cause conduction issues but that, in his view, it was rare and produced far different symptoms from those I had. I looked this up - and he is right: severe bradycardia is the noted symptom, followed by swings of severe tachycardia. A large hiatus hernia can physically irritate the heart and cause ectopic beats, and these can lead to AF. So I was left not knowing why I had issues when I did nor whether the stomach affects my heart or my heart affects my stomach!
Vagal AF has caught on thanks to the Internet, much like taking magnesium has. but I think a close inspection will show that very few mainstream medics promote either. I think the majority of the "evidence" is exaggerated or made up, or anecdotal, with much from snake oil merchants out to take our money. That's my view anyway and I know others have very different views.
AF and other arrythmias are so naturally sporadic in most people that the effect of something added into the mix would be very difficult to work out. Double-blinded studies have yet to show that oral magnesium can reduce arrhythmias, so far as I can tell - and I have searched the databases.
Steve
I am puzzled why you do not have an ablation. Vagal triggers are many, doubt you can find them all, even if you did likely others will cause AF. My excellent EP believes triggers interesting clinically at the start of a patient’s AF journey but after a bit any and everything may triggrr AF, and triggers aren’t causes, a tendency is the csuse. He also thinks AF begets AF so nightly is not good. He would have exhorted ablation a long while ago. Worth considering? Good luck
Fkecainide is the preferred medication for vagal PAF, so it's worth trying it at the new recommended dosage. It could well work. Unfortunately, vitamins are not known to stop AF, although they may be beneficial for overall heart health (magnesium may help ectopics for some people ). Vitamins are better obtained through foods than supplements according to scientists. You seem to have lost confidence in your EP. I think that either you need to see another one, or at least re-establish some sort of rapport with your present one. Regarding the ablation I would ask why , specifically, he doesn't think it's a good idea. Suitability for ablation depends on a number of factors-he might (or might not) have a good reason. Finally, most of my PAF is at night. Things which I have found helpful-although there are no guarantees- are: avoidance of food 3 hours before bed, no alcohol any time after lunch (this is important), relaxing *before* bed. Time your medications so that their maximal strength occurs at the time you are most likely to have an episode (with Sotalol, which I take, this is after 4 hours- I don't know how or if this would work with flecainide).
Ablations aren’t usually offered to patients who refuse to try the prescribed medication ☺️
Yes, that's true: you have to have failed on medication to be offered ablation. But I think that if you encounter problems on taking a higher dose (as appears to be the case here) you can be offered one.
I was offered the option: medication (rate/rythmn control) or ablation - my EP didn't impose conditions.
I think that is an older approach. My service thinks ablation early, don’t let AF set in, become a habit. No requirement to take meds except anticoagulant, before ablation offered
I think sticking religiously to the same routine (once you think you have found the right one) is an often overlooked part of AF treatment.e.g. in my case in the evening that would be Flecianide at 4pm (3 or more hours after eating), eat a light tea at 5pm and then nothing more until 8am.
I am sorry you are having such a tough time. What stands out to me from your experience is:
Change your EP
See a cardiologist first & discuss upping the Flec dose, say 100mgs am & 100mgs pm
See a top flight Alternative Practitioner e.g. Naturopath, Nutritionist
Accept a lot of changes may be necessary at the same time
Order the Afib Cure book by Dr John Day
Check out your breathing, try nasal strips & mouth strip at night (see James Nestor YouTube vids) - assuming no comorbidities/breathing issues
Wind down slowly prior to bed with mindfullness, light yoga & if you have a faith prayer.
All the above, I have done and found beneficial. Best wishes!
So I'm also on your "stupidly low dose of flec" but I decided to take 50mg at night and no flec in the morning. The reason was my afib episodes were mostly at night, like yours. You might want to try that before upping the dose. You will still have some flec in your system during the day because of the half life, but you will have more protection at night. Ask your doc. This combo is working for me so far.
Are you on beta blockers now with your current dose? If not, the reason your doctor will probably want you on beta blockers at a higher dose is not because they will necessarily help keep you in rhythm, but they will act as an AV nodal blocker which will make taking flecainide safer, as it sometimes can cause a very fast flutter. It's possible that is what you experienced at the higher doses before? I did when I first started flec but that seemed to go away after a week. I take diltiazem as an AV nodal blocker.
If you do decide to go on 50 flec at night only, ask your doctor about adjusting your nodal blocker dosage to reflect that, i.e. you may not need it during the day with a net of less side effects.
Jim
A suggestion - try fasting for a day, just to see if a quiet gut makes any difference. It's easy and does no harm for a day. If it does make a difference then try a half day fast.
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