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Vagal AF - I cant sleep at night - What medication do you take ?

JoseT profile image
69 Replies

Hello

I am 42 years old man and I have lone vagal paroxysmal AFib and the vast majority of my AFib episodes start at midnight during my deep sleep, probably caused by the vagal nerve and a slow heart rate. They usually last minutes or hours.

If you have vagal AFib I would like to know please which medication are you taking please. The doctors seems to be quite unaware that betablockers shouldnt be given to people with vagal AFib.

Currently i dont manage almost to sleep and my life is quite miserable because of the sleep deprivation . I dont have any other health issue and i cant believe everything is so difficult for me right now. Please i appreciate very much your input.

Thank you to everyone

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JoseT profile image
JoseT
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69 Replies
Jalia profile image
Jalia

Hi Jose, I've been prescribed Disopyramide which is a drug not commonly used but it is known to be particularly useful for vagally induced AF. It is the only drug which worked/works in any fashion for me. It doesn't work 100% for me but I'm a rather difficult patient ! I do hope you can get your doctor to allow you to try this

. Like you, beta blockers are useless for me. My episodes very frequently started just as I was going off to sleep or woke me up. Unfortunately they never stopped and I ended up in ER or A&E and was usually electrically cardioverted there and then! Hence my tally of 22 DCCVs....

Best Wishes

J

JoseT profile image
JoseT in reply toJalia

Hi Jalia,

how many months you were having those episodes? I hope you dont need more of those DCCV

Best wishes and thank you,

Jose

Jalia profile image
Jalia in reply toJoseT

It wasn't a case of months , it was years ! I've had 4 RF ablations which helped to a degree, the last one 7 months ago which has helped considerably .My episodes started at age 48, I'm now 77.but as I indicated earlier, not a typical case you will be pleased to hear!

JoseT profile image
JoseT in reply toJalia

Hello Jalia, i am considering ablation if i cant get out of this situation. Which dose of Disopyramide are you taking? It looks Disopyramide is quite effective with vagal AF but is a drug which is hard to find.

best wishes and thanks a lot

Jalia profile image
Jalia in reply toJoseT

Hello Jose, my dose has varied over the years but currently 150.mg twice a day.Although I had my 4th ablation 7 months ago my EP wants me to stay on this for the time being. I have no problems doing so.

Pleased to answer any questions you may have about the drug as there are not many of us taking this. My EP tells me that I am his only patient on Disopyramide.

Jalia profile image
Jalia

John, I have read also that beta blockers are not useful for vagally mediated AF but they are dished out just the same !

JoseT profile image
JoseT

Yes it looks bradycardia/slow heart precedes those Afib events that disrupts my deep sleep. I am taking bisoprosol 2.5 with flecainide (100mg) but i get the feeling i am getting more often now afib than before so it is not working so far. Interesting to hear about Nebivolol, i would mention it to my cardiologist (fortunately he is very open for a second opinion). Thanks for the input.

Generally beta-blockers shouldnt be used to treat vagal Afib, only adrenergic Afib or mixed Afib (vagal/adrenergic pattern):

"In the vagally mediated form of the arrhythmia, the guidelines advice to avoid treatment with beta-blocking drugs, sotalol, propafenone or digitalis, as they may worsen symptoms. Beta‐blockers are usually the treatment of choice in adrenergic AF. , the ‘adrenergic’ form of AF form is less common than the vagal type, and tends to occur only during daytime, being preceded by exercise, adrenergic stimuli (such as exercise) and emotional stres. However, manifestations of both vagal and adrenergic AF may be present in the same patient, and the clinical pattern may differ over the course of time."

"Although not recommended, patients with a vagal trigger pattern were frequently treated with a beta-blocker, sotalol, digoxin or propafenone. Non-recommended treatment was associated with a clear trend towards aggravation of vagal AF. In the vagally mediated paroxysmal AF patients, non-recommended treatment was associated with a deterioration to persistent or permanent AF in 19% of the patients during 1-year follow-up"

I guess this doesnt apply for the necessary beta-blocker that goes together with the Ic antiarrhythmic. Or would it better to use a calcium channel blocker like diltiazem instead of a beta-blocker?

"During treatment with Class Ic anti-arrhythmic drugs, rate-control medication is advised to prevent 1:1 conduction in the case of Ic atrial flutter. Therefore, rate-controlling drugs such as beta-blockers and digitalis are used frequently. However, non-dihydropiridine calcium channel blockers (i.e. verapamil and diltiazem) could be used as safe alternatives. Furthermore, the need for rate control in patients with paroxysmal vagal AF may be less, since the heart rate during vagal AF is usually not as high as in adrenergic AF"

do you take betablockers only? Are your afib episodes mainly vagal (rest/sleeping/after meal)?

Teresa156 profile image
Teresa156

Hi JoseT,

I have vagal lone paroxysmal Afib….and I am actually on a beta blocker only, Bisoprolol. I don’t like taking Bisoprolol and have only been in it since last September….I take a very low dose at the moment as tapering down slowly. I’m on 1.6 mg and intend to go to 1.25 mg or lower. I read too that beta blockers shouldn’t be prescribed for vagal Afib, but ( touchwood)it’s stopped mine since November.

The 2.5 mg took my daily HR to low 50s at rest and now 1.6 mg is doing it too. I am probably around the 40-50s when I sleep. Have you tried sleeping on your right side?

I cannot sleep properly on 2.5 mg Bisoprolol as I woke up every two hours….you could ask about lowering the dose gradually perhaps? I sleep better on a lower dose. Are you taking it with fleconaide due to the continuing attacks?

I only had an attack in November as I tried to come off the bisop, unsuccessfully.

I’m really sorry you aren’t sleeping. I know in the past I have actually slept through an attack, but it is hard and I know how you feel. In the past I thought they were harmless palpitations so I think as I was fairly relaxed about it, it must have made a difference. I am not so relaxed about it now.

I used to get attacks after food, or as soon as I lay in bed…and my heart rate was actually quite high - in the 180s.

I think that sometimes there must be exceptions to the rule perhaps that beta blockers can’t be taken for vagal Afib.

Teresa

JoseT profile image
JoseT in reply toTeresa156

Hi Teresa

I am having Afib episodes every night but most of the time my HR is always within the expected range. They always start around midnight in my deep sleep and once i am awake is hard for me to sleep again as the AF keeps coming back until the morning. I avoid the left side as i know it triggers always the Afib but i still get them even if i lay down on my back or i sleep on my right side.

Yes, i believed i was also having these palpitations before but i ignored them and i thought they were harmless, funny i was also managing to sleep more less.

I also tried to lower the dose to 1.25 mg but i didnt see a difference. I dont see betablockers are working for me but i agree there are probably exceptions.

I saw the following medication recommended for vagal-induced AF. I wonder if someone has experience with them.

"

The 2014 AHA/ACC/ESC guidelines formanagement of AF specifically discuss the pharmacological management of vagally-induced AF. They recommend as first line, use of disopyramide — a long acting anti-cholinergic agent. They mention that beta-blockers, theoretically, could aggravate vagally-mediated AF. The previous 2006 guidelines expanded further, suggesting flecainide and amiodarone as other suitable options and discouraging not only beta-blockers but sotalol, digoxin and propafenone as potentially worsening vagal AF

due to intrinsic anti-adrenergic activity.

"

Reference:

Vagal atrial fibrillation: What is it and should we treat it? (2015)

Alexander Carpenter ⁎, Antonio Frontera, Richard Bond, Edward Duncan, Glyn Thomas

"

Class I antiarrhythmic drugs with vagolytic effects are theoretically effective in treating vagal AF. Propafenone is not very effective because of its beta-blocking properties. Coumel recommended flecainide, quinidine, and disopyramide in treating vagal AF (in decreasing order, respectively).

"

Reference:

Vagal Atrial Fibrillation (2007)

Yung-Hsin Yeh, Kristina Lemola and Stanley Nattel

Teresa156 profile image
Teresa156 in reply toJoseT

Hi Jose,

I am sorry you are suffering like this and I have been through many sleepless nights myself…it’s horrible. You do need to get this sorted. I would guess that your problem is this Bisoprolol - though it could also be the fleconaide., it’s hard to tell.

You do need to ask your doctor, or cardiologist if you have one, to switch you to another medication. Do look into side effects of these other ones though, especially the Amioderone, as you don’t want to start feeling worse than you do now. Amioderone does have some big side effects. I wonder if you could try nebivalol, just to see if it does make a difference to you first perhaps, as you never know. I think I would try nebivalol if I tried another beat blocker.

Also, try not to Google too much about trials that have taken place for Afib. I am like you and Google for as much info as I can and I also read these trials and tests that have taken place, but a lot of trials recorded are heavily flawed, but they never tell you those details. I try to take a lot of information as not being fully truthful and try and make my own judgements. Like you, I do feel like I’ve been left to get on with it, but too much googling is bad for us too 😞 it only ever gives us the ‘worst case scenario’ - honestly, I’ve been there and don’t believe everything you read. Some of it too, is very biased. You don’t know who has written a lot of stuff on there. You may get trials that recommend a certain drug and then find that the writers of the trial are the makers of the drug.

Have you tried Bisoprolol on it’s own without the fleconaide? Do you know what your HR is when you have these attacks when you are trying to sleep? Is it definitely Afib, are you recording it on something that tells you it’s Afib? I am only asking in case it’s another type of arrhythmia, or ectopics or palpitations. It is odd as I thought that fleconaide especially should be stopping your episodes and you shouldn’t be getting them like this on the medication you are on, from what I gather.

Teresa

JoseT profile image
JoseT in reply toTeresa156

Hi Teresa

thank you so much for your input.

Since i got covid in May 2021 i was having few "strange episodes" after having coffee or alcohol. For many months my Afib I was not properly diagnosed but i knew something was wrong. I felt dizzy and lightheaded but I didnt notice it was my heart since my HR was within the normal range. I am certain my Afib was definitely triggered after the delta strain in May, i dont have any doubt about it. During covid my D-dimer (a marker for inflammation) was really high and i can remember for instance how my backbone would "shake" after stopping the car at the traffic light, like my vagus nerve was also suffering a lot from the virus. By the way, vagus nerve inflammation is one of the main post-covid issues (see WSJ article about it).

Last Christmas i started having the afib symptoms more frequently or i become more aware of the night symptoms, not sure. Since then i am having them every single night. I guess it is a vicious circle, Afib is triggered by sleep deprivation and sleep deprivation is triggered by Afib too.

The holter monitor device didnt catch my Afib but i managed to do it the following days using apple watch (ECG monitor) and the Wellue ECG (available in amazon) and the doctor confirmed it is AF because there are not p-waves present. I took a lot of them so there is no doubt about it.

I talked now to the cardiologist to start recording the afib events with an event Monitor and have a better idea of what exactly is happening with afib are taking place. I would also like to switch to Nebivolol and see if there is an improvement...

Jose

Teresa156 profile image
Teresa156 in reply toJoseT

Hi JoseT,

I am so sorry that Covid seems to have done this to you. It’s very unfortunate that it happened this way.

Yes, you seem to be in a viscous circle.

It does sound like you’ve had all the confirmations that you can get that it’s Afib.

It might be that 2.5 mg of Bisoprolol isn’t quite enough for you, but an increase in dose might be more detrimental in side effects for you. Some people take Bisoprolol in the evenings, rather than the mornings - not sure when you take yours, but moving your Bisoprolol to the evening, might help you as well? Definitely worth trying nebivalol though and I guess you would know quickly if it didn’t work. I am aware though that it is milder than Bisoprolol.

You may need to even up your fleconaide dose or take something different to a beta blocker. I think it’s going to have to be trial and error to find the right meds.

If this continues and you’re not getting anywhere with medication, I would think you are a candidate to have an ablation as you cannot carry on like this.

Also - are you taking magnesium ? Particularly magnesium taurate, which is known to help the heart and can calm it. Some people take quite high doses…I take both magnesium taurate and magnesium glycenate. I also take added vitamins, plus I take a probiotic daily as well now.

Teresa

JoseT profile image
JoseT in reply toTeresa156

Hi Teresa

I am taking magnesium and i also heard some potassium supplement might be good as well. I recently ordered magnesium taurate to see if it makes any difference.

how much exercise and which kind are you doing? Just wondering if the afib is triggered more when there is too much physical activity.

Regarding the probiotic, i heard about. Is there any in particular do you recommend?

thank you so much

Jose

Teresa156 profile image
Teresa156 in reply toJoseT

Hi Jose,

I thought I’d replied to you earlier, but it must have gone elsewhere 😳 I do apologise for not coming back to you sooner.

I walk briskly for about half an hour to 40 mins a day. That’s all the exercise I currently do. I am quite active, though I don’t go to the gym. I’m not overweight and a healthy BMI.

If you exercise, try not to do too much, especially if you are tired.

Yes, definitely the magnesium taurate, I mix it with magnesium glycenate as well throughout the day. I take largest dose of magnesium in the glycenate form at night.

The probiotics are Lamberts Acidophilus Extra. Lamberts are a well established and trusted brand snd I hope you can get them in Spain. It’s 10 billion cultures. Some people take higher doses, but this one seems to help me, I noticed within a week. I have a bit of IBS going on I think and it’s really helped that already. I was taking a 5 billion pill from another on line company which seems popular with people but it did nothing at all for me in fact it made me worse and I took it for over a month and it was more expensive. We are all different of course.

I hope this helps.

Teresa

TechGuy62 profile image
TechGuy62

Hi JoseT,

I've spent the past year trying to figure out what was causing my paroxysmal Afib. I've had four events between Feb 2020 and Feb 2021. The first three required cardioversion. They used Metoprolol to try and reduce the rate. My heart rate went from 135 to 118 but they couldn't get it down any lower. I finally asked to see an EP after my event in November. I told him that every time I had eaten a large meal, I had an event. Over the past year, I have been on Metoprolol and Digoxin.

My EP told me he believed I had Vagal Afib. My last event was during a big meal on Valentine's Day. This time my EP was notified. I had been admitted into the hospital because they were having a hard time keeping the rate down. My EP switched me from Metoprolol to Diltiazem and within an hour I was down to 70bpm. He took me off of Digoxin and put me on Flecainide.

I was sent home the next day bouncing in and out of Afib, but by the evening, I was in normal sinus rhythm and 62bpm. I have been there since. I have also researched and found the same information that you have found regarding the use of beta blockers and antiarrhythmics like Digoxin. You have also probably found that the outcome of ablation is pretty good for vagal Afib as well. I am getting an echo in a couple of weeks and then meeting with my EP to discuss ablation since I would rather be off the medications if that is possible.

One day at a time.

JoseT profile image
JoseT in reply toTechGuy62

yes i want to go also for ablation, i cannot stand not sleeping every night

TechGuy62 profile image
TechGuy62 in reply toJoseT

I sleep in bed with my head elevated. It seems to help. I am also taking melatonin a half hour before bed, and I don't watch TV while in bed. I use an aromatherapy machine that plays nature sounds - running water is the one I like most. The room is dark and cool.

I am sorry you are going through this. I hope you find a solution that works for you. This forum has been so helpful to me. Just knowing there are others who have similar experiences is very comforting.

secondtry profile image
secondtry

Hi JT, sorry to hear you are having a tough time particularly as you are so young!

I was diagnosed with Lone PAF at age 60 and added myself vagally mediated as the cardiologist didn't choose to recognise that. 8 years on I have no AF and good energy. I can only relate my personal journey. I hope one or more of the following may help:

Flecainide had to be increased from 100 to 200mgs to stop 9 episodes in a month.

No other drugs were prescribed by my cardiologist ('as they will make you feel unwell')

I continue to take a Mg compound & CoQ10 supplements recommended by a Naturopath

I decreased gluten (avoid substituting gluten free supermarket products!) and sugar by 75%, no caffeine or decaf or fizzy drinks particularly tonic and cold.

I decreased exercise avoiding pushing myself

I decreased all forms of stress

My last meal of the day is light, no red meat and taken by 6pm

Before bed, I take an hour out for Mindfullness, light Yoga and prayer.

I put an extra pillow under my head at night

I use a nasal strip to reduce sleep apnoea & recently a mouth strip also

My personal belief is that AF in most people is caused by an accumulation of factors and therefore to cure it you have to match those equally with a host of Lifestyle changes.

Best wishes.

JoseT profile image
JoseT in reply tosecondtry

Thanks a lot, I am trying to follow many of those practices. I should also include the yoga and more prayer as i am becoming too anxious due to the lack of sleep.

I try to be active with sports, but i guess i should do more mild forms of spots from now on.

Is the mouth strip generally beneficial for vagal AF? Just wondering because perhaps i should use them as well.

Could you tell me which beta-blocker do you use with Flecainide please?

thank you and best wishes too

secondtry profile image
secondtry in reply toJoseT

Re sports: I have changed from tennis & skiing to walking (underrated for AF) & walking basketball.Mouth strip: All about breathing better using just the nose oxygenadvantage.com/product...

BB: My cardiologist unusually didn't prescribe one. Tried to get to the bottom of this with him but he didn't expand why. My research suggests because of my HR at 55 and BP 115/65 and under 70yo there is unlikely to be a problem, which can for older people be typically sudden very high dangerous HR.

Stress: Poor gut health can transfer anxiety to the mind. Equally improved physical health can I believe transfer calming feelings to the mind all via the Vagus Nerve. Slowing your breathing down to 6 a minute through the nose only whilst walking and better still doing some humming whilst breathing out has helped my anxiety nb scientific explanation would be lengthy but I believe it is tied up with Nitric Oxide.

An interesting thread. My EP quite clear that vagally triggered AF, especially in early years, is counter indication for beta blockers. Somehow this doesn’t filter out to all medics. Good luck

BigDunc profile image
BigDunc

Hi JoseMy AF almost always occurs at night and I also have a low resting HR through years off endurance exercise.

Flecainide worked very well for me and kept me in Rhythm for over 12 years. Following diagnosis of mild heart disease I was taken off Flecainide and even following a 2nd ablation began suffering bouts of AF every 1-2 weeks and would flip myself back into Rhythm with vigorous exercise.

I met last year with my EP who put me on Disopyramide and this has been a life changer I have been in normal Rhythm for 4 months and I even drink alcohol again (moderately)

I have some ectopics but that’s all

I also a small beta blocker Bisoprosol daily 1.25mg

Hope this helps

JoseT profile image
JoseT in reply toBigDunc

Hi BigDunc,

thanks for the input. which beta-blocker were you using with Flecainide during those 12 years? I believe i have the same issue as you because my HR is slow during resting. What was your dose of Flecainide?

Do you tolerate better Disopyramide than Flecainide? From what i see Disopyramide is for some cardiologist the first choice for vagal AF.

thank you and regards

Jose

BigDunc profile image
BigDunc in reply toJoseT

I started on 50mg Flecainide twice daily but this didn’t stop the AF until I went on a 100mg and I only had a couple of short episodes of AF in all those years. I had no sides effects on Flecainide. After around 6 weeks coming of Flecainide I went into regular AF. I wasn’t on any Beta-blockers then.Disopyramide does give you quite a dry mouth and my skin is itchy at times but a small price to pay to be AF free. Although too be honest I was lucky as AF wasn’t too much of a burden for me the worst thing was going into AF during the night and I’d be up urinating every 5 mins. I think I would have preferred being in permanent AF.

Just to mention Disopyramide really helped with stomach problems I was having and this seemed to be a trigger for AF.

Good luck

irene75359 profile image
irene75359

Sleeplessness is very tough. Have you tried melatonin? It can't be taken with warfarin but I am presuming you aren't on anti-coagulants because of your youth. It is freely available in Spain for adults and children. It isn't available in the UK and I bought some in Spain for my grandson who is deaf. He was up most nights with night terrors as he didn't have his hearing aids in and couldn't hear the comforting noises of home life. It transformed the family's lives.It may also be worth being checked for sleep apnea.

Best of luck.

JoseT profile image
JoseT in reply toirene75359

Hi Irene

Yes my CHA2DS2-VASc is zero so my risk at the moment is low. i bought melatonin 10mg but i read that the maximum recommended dose is 5mg so i take half pill. I dont have usually issue to go to sleep but the Afib "wakes up" at midnight and then it will regularly wake me up as i am trying to sleep. Yes melatonin helped me a lot in some of the nights.

Wish you all the best and thanks for your reply

irene75359 profile image
irene75359 in reply toJoseT

I have just been directed to a link that says melatonin can cause arrhythmias. Please forget my suggestion! healthunlocked.com/afassoci...

JoseT profile image
JoseT in reply toirene75359

not sure about that Irene

there are contradictory reports regarding melatonin

Melatonin also protects against heart rhythm disturbances

healthandscience.eu/index.p...

Melatonin for a Healthy Heart Rhythm

intechopen.com/chapters/71266

Melatonin to Rescue the Aged Heart: Antiarrhythmic and Antioxidant Benefit

hindawi.com/journals/omcl/2...

what is the truth ?

irene75359 profile image
irene75359 in reply toJoseT

No wonder we get confused!

manabouttown profile image
manabouttown

Hello there,I had a sinilar problem but after a bit of investigation it was found that I had sleep apnoea.Sleep apnoea and paroxysmal AF go hand in hand and you should get tested for it.

I know have a simple CP PAP air mask which I sleep with every night and together with some medication - flecainide and rivaroxaban - my AF is miles better.

Good luck

JoseT profile image
JoseT in reply tomanabouttown

i need to check more on that. Did you do a sleep study? How did you find out?

thanks

manabouttown profile image
manabouttown in reply toJoseT

I did a test at home from Philips sleeptest.co.uk/product/in-... luck

belindalore profile image
belindalore

Have you had your nutrients tested to see if you may be deficient in any of them? Most Drs don't bother to do that but it's important. Magnesium is an important nutrient for the heart. If you can't get tested you might try taking magnesium. It works to calm the heart and also promotes sleep. It can also lower blood pressure in some people. It does me. So I take small doses through the day. And it helps me sleep a little better. Many people here take magnesium. Magnesium glycinate or citrate are two good ones. I also do deep breathing exercises with stretching before bed to relax and that helps too. Hope you find what helps you.Take care and be safe.

JoseT profile image
JoseT in reply tobelindalore

Hi Belinda

how much magnesium i can take a day and which times of the day are you taking yours?

I usually dont have problem to go to sleep.... it is just few hours around midnight when the "party" starts :-(

thanks a lot

belindalore profile image
belindalore in reply toJoseT

It really depends on the person how much magnesium they take. I don't think there's a one size fits all dose. Some here take up to 800mg a day. For me I do well on on about 250 mg per day, since it lowers my blood pressure (a side effect of magnesium in some people). I buy Kal brand magnesium glycinate. It's a big tablet so I cut it in 4 pieces and take one quarter dose at each meal and one before I go to bed and one early early in the morning. To keep my blood pressure consistent. It also works to calm. Taking the magnesium has helped me sleep better along with doing my deep breathing/stretching exercises before going to bed. I sometimes fall asleep on the floor doing the exercises before I crawl into bed. Once in bed it's not long before I'm back to sleep. It's trial and error for taking supplements. No different than the drugs. We all have to try and find what works for and helps us. Wishing you the best. You will eventually find your solution.

Cos56 profile image
Cos56

Hi,65 year old woman here.

I, too, have the vagal type and it would hit when I’m completely relaxed or asleep. I take metoprolol 25 in the am along with Eliquis 5 mg and Flecainide 50 mg. At night, Eliquis 5, metoprolol 12.5 and Flecainide 50 .

The Flecainide changed my life!!!!! No more “episodes.” It was a miracle for me. I’ve been on the regime since December. I’ll see my EP on the 15th. Maybe he’ll make some changes, I don’t know. When I googled the beta blocker I take along with the Flecainide, I read it was the treatment of choice. Of course not everyone’s the same, but I don’t even get a little “blip” anymore. No side effects from any of the meds as yet, anyway. I exercise daily without any issues.

Good luck on your journey to finding the right cocktail of meds. Did I mention my restful sleeps?

Take care ❤️

JoseT profile image
JoseT in reply toCos56

Hi Cos

thank you. were you taking a different betablocker before metoprolol? What actually helped you more? A new betablocker or the usage of flecainide?

thank you so much and take care as well

Cos56 profile image
Cos56 in reply toJoseT

The only change was the addition of 50 mg of Flecainide twice a day. In the beginning, 6 years ago, metoprolol 25mg was all I took. This past November, episodes became more frequent and Eliquis was added to prevent a stroke. But after a nuclear stress test and echocardiogram was done to check the structures of my heart, which was normal, my EP added Flecainide to PREVENT episodes. It’s been working! For me, it was life changing in that I no longer feel afraid to go to sleep or relax on the couch at night. In this forum, I see more ablations rather than talk about this medication. My EP had not talked about that option for me…yet. I pray this is the “cure” for me since I seem to be tolerating it well.

Hope this helps❤️

Cos56 profile image
Cos56 in reply toJoseT

Same beta blocker. Metoprolol 25 mg in am, 12.5 in pm.Flecainide made the difference!

I had an echo and nuclear stress test first to make sure structures were okay, and they were. Haven’t had any episodes since starting it.

healingharpist profile image
healingharpist

Jose, I am so sorry to hear you are losing sleep and feeling so miserable... please know that you are not alone. I have had vagally-mediated afib for 10 yrs, and it suddenly went to every 2-3 days episodes. Also, I could no longer sleep lying down. So for 3 yrs, I've been sleeping sitting up in a comfortable chair and sometimes a recliner. But, in spite of being vagally-mediated, I now take a 3/4 pill of Metoprolol (it's a 25 mg pill), and now only get an episode every 2-3 weeks (and we hope for longer, if I go to 1 full pill daily). I take flecainide only PIP, 150 mg if I get afib, and it stops it in 2-3 hrs. There is an anti-anxiety effect in Metop. which I think helps me sleep well. My EP said Metop. is mild--altho I'd go on low-dose Amiodarone if it would help (my 96-yr-old mother has been on 100 mg Amiod. for 22 years, no side effects!)

There is also the Dolphin Microstim device, I've just purchased it & taken the training, which is used on acupuncture points for vagal stimulation, sleep and anti-anxiety, pain, etc. You might want to read about that. It's even been approved by Health Canada for COVID treatment, because it improves immune response.

I have also had an inflammatory "attack" on all my joints, which we think is promoting afib, I have a CRP of 10.5 and the Afibbers.org site says, to eliminate afib, get it down to -1. But they don't say how!! But inflamm. is definitely causing afib in many of us. I also eat very small meals and nothing after 6:30 pm, etc., but I can still get triggered occasionally by indigestion, which is also worsened by inflammation. Jose, this is weird, but I found that humming, singing, and playing the didgeridoo has stopped ectopics and afib episodes... but you can hardly get up at 2 am & play the didgeridoo :-). Bottom line is the slow diaphragmatic breathing which can change heart rhythm. I also use my Harp of Hope CD at night and have converted many AF episodes with that.

Maybe some of my journey will give you some new leads. Don't lose hope--keep trying things. Metoprolol could be a temporary fix for you while you work on other things. We just need relief from the constant attacks in order to even think straight!! Blessings to you. Diane S.

JoseT profile image
JoseT in reply tohealingharpist

thank you so much Diane

Is the Dolphin COVID-19 ARDS Kit the one you purchased? I might definitely give it a try to see if it helps.

yes there seems to be a correlation between inflammation and afib. I hope you can find a way to manage better those inflammatory issues.

thank you and blessings as well

healingharpist profile image
healingharpist in reply toJoseT

Jose, Just go to dolphinmps.com (the main site) and scroll down to the kits and prices, which include books and charts for all of the Acupuncture points to use. You probably want the "Dolphin Single Kit with Vagal Stim accessories", and 1 device is enough for doing vagal stim (2 devices are more effective for treating scars--which is another discussion). But read the website very carefully first--also search online videos about people using the Dolphin, so you know more about it before you buy, as it's not cheap. I am also using it for pain; it's not a quick fix, but with regular treatments it is said to be extremely effective for many conditions. The main office is in Toronto, they are very helpful if you phone with questions.) My Chinese acupuncture doctor uses it on patients & says it's very effective. I am starting on a regular treatment schedule and will keep everyone posted on results. Best wishes for much improvement, Jose! Diane S.

mjames1 profile image
mjames1

Lately, my afib episodes also happen only at night.

I take the antiarrhythmic drug Flecainide (50mg morning and 100 mg evening). I also take Diltiazem as a AV nodal blocker, which is a safety measure for being on Flecainide.

If you qualify for Flecainide (heart should be structurally sound) maybe you could get by taking it only at bedtime, with either a beta blocker or calcium channel blocker for safety. Ask your doctor.

JoseT profile image
JoseT in reply tomjames1

Hi mjames

thank you. Just wondering, did you try a betablocker before Diltiazem? I wonder if the calcium channel blocker works better with flecainide. I would also definitely prefer to have a bigger dose of flecainide only at the evening.

sure, i will also consult with my doctor. But my cardio who has 30 years experience told me that vagal AF is a very rare heart condition so there is not much known about it. So he is open to all kind of opinions. Hence i am happy to hear all the opinions here and share it with him

best wishes

Jose

Ablation7 profile image
Ablation7

Hi Jose. I would describe my AF as bags. I take Diltiazem. I’m up to 360mg daily and having my second ablation in a few weeks. Still getting afib monthly, but less frequently than before, heart rate doesn’t get as high and episodes are usually just an hour or two. Good luck!

JoseT profile image
JoseT in reply toAblation7

Have you taken any other medication before? Just wondering how was your journey to end up with Diltiazem only. Thank you and all the best with your upcoming ablation, hope it will reduce the afib episodes.

mjames1 profile image
mjames1 in reply toJoseT

I think most people will be given a beta blocker to take with Flecainide, but I don't tolerate beta blockers very well, so I was given a calcium channel blocker (diltiazem) which serves the same purpose.

That said, when I do go into afib, I sometimes take a small dose of fast acting metoprolol tartrate, a beta blocker, at the onset to add further AV node protection. My ep didn't require it, but has no problem me doing it. And if the episode is longer than 30 minutes it will also lower my HR when in afib. Sometimes I'll even take a little it if I start getting ectopic beats which tend proceed my afib episodes.

I am also authorized to take another 50 mg of Flecainide as a pill in the pocket at the onset of an episode. And another 50 mg in an hour if I have not converted. But sometimes I wonder if that's even necessary because I generally convert in under an hour.

I also sometimes take 25 or 50mg of flecainide again as pill in pocket when I get ectopics. Sometimes it stops them but sometimes I'll just go into afib within minutes of the ectopics so the extra 50mg would then serve as my first pill in the pocket. You just have to find the right combination that works best for you which can be a little trial and error. And since my episodes are always at night now, that's why I take more Flecainide in the evening then in the morning.

As far as vagal afib or not, you will get a lot of opinions from different doctors, but I don't think I was put on this particular drug combination because I had vagal a fib or not. It was just the antiarrhythmic treatment strategy vs the rate control strategy.

I should add that while I've had a fib for over 30 years, my experience with Flecainide is only within the last month or so. Prior to that my episodes were very far part so I basically just brought my rate down with diltiazem and a little metoprolol tartrate until I naturally cardioverted. That usually took between one and three days but no big deal if I was only having one or two episodes a year.

But then as what tends to happen with afib, my episodes got closer and closer together and lasted longer and longer. Therefore the new strategy with Flecainide.

Ablation7 profile image
Ablation7 in reply toJoseT

Hi Jose. I believe I was in several medications in the hospital and Diltiazem worked best. I was prescribed daily metoprolol last fall, but have opted not to take it as I am already fairly tired from the Diltiazem. Thanks for the well wishes.

Kent2007 profile image
Kent2007

JoseT

You have my sympathy - I can't imagine how tough it must be to go through the vagal AF experience every night. Over the 15 yrs I've had PAF, the main form i've had has morphed from andregenic to vagal, with the latter now dominating. Mine kicks in at anytime between midnight and 3.00am, and lasts sometimes for 30 minutes, sometimes up to 5 hours. On a longer timeframe, I find I have good periods and bad periods. I'm in a good one at present - it's about 10 weeks since my last bout. But, prior to that I had a night-tine bout around once per week. During this last bad spell, I visited a cardiologist and discussed medication. As a result, I dropped my bisoprolol from 1.25mg x twice per day (8.00am and 8.00pm) to just 1.25mg at 08.00am. It made little difference. It was perhaps 3-4 weeks later, I entered a good spell and, encouraged by comments on this forum about bisoprolol, I have now dropped to nil. This also appears to have made no difference to my AF events (I'm still on a good run). Throughout, I have continued with flecainide, 100mg x 2 per day. I don't know what you can infer from this, as we are all different. Good luck with whatever you try to do.

JoseT profile image
JoseT in reply toKent2007

Hello Kent

you are exactly describing the vagal AF i have every night. I just wonder why mine is just kicking every single night. So you take flecainide alone? Is that okay? Just asking. And do you take any sort of additional supplement? I am really interested in your case and seems very similar to mine.

thank you so much

Kent2007 profile image
Kent2007 in reply toJoseT

JoseT My AF started in 2007 but was not very frequent. Then I caught Lyme Disease and my AF went haywire - it would kick in at any provocation. I remember being in hospital with two doctors debating - beta blockers or flecainide? The one advocating flecainide won the argument on the grounds that I was very active (and still am) and the beta blockers would act as a dampener on my ability. So I went on a single dose of 200mg 'slow release' flecainide. This then became unavailable so I shifted to 2 x 100mg. I was told I could take more if I needed it to bring my AF under control. I did this on numerous occasions but I am told one has to be pretty careful about over doing it, as it can provoke diifferent and worse forms of arrhythmia.

After a particularly bad run of AF, in 2015, I saw cardiologists again and a dose of 1.25 mg of beta blocker was added to my regime. At some point I stepped it up to 2.5mg (probably after another bad run) but, following my discovery (thanks to this forum) that my AF was now mainly vagally-induced, I saw a different cardiologist and dropped the evening dose.

Now in another good spell, I have dropped the beta blockers altogether, (but not on medical advice). So far so good. And I do feel slightly stronger when exerting myself.

BUT - we are all different. Reading the entries on ehre each day, I realise that I am a lucky Afibber in that my Af and medication I take are not debilitating. Other people clearly react differently. Good luck with whatever you and your medical advisers decide.

Coeurdelion profile image
Coeurdelion

Can vagal AF be positively identified? I have thought my Afib could well be caused vagally and discussed it on this and other forums over several years.My attacks almost always occur at night during the early hours of my sleep I too have a low hr in the low 50's. I came off beta blockers after trying them early in the piece, years ago.

Currently, attacks have lessened both in terms of frequency and severity. I can't be sure why but for the past 2 years or so, after studying various reports and trials, I have been taking pre-biotics as well as magnesium supplements. I also I ensure I don't eat after 7pm and try to have my main meal at lunch time.

It may be coincidental of course.

JoseT profile image
JoseT in reply toCoeurdelion

if you are able to exercise and not have afib episodes and if your episodes are happening at night then definitely is vagal.

could you tell me please which probiotics you take and which are the magnesium doses?

thank you so much

Coeurdelion profile image
Coeurdelion in reply toJoseT

Pro iotics

pattycake138 profile image
pattycake138

hi Jose :) I am new here...today. My afib has started during my deep sleep also and wakes me up. I have not had it a lot but when I did I ended up in the emergency room. My BP skyrockets with afib starting first. Verapamil (Calan) SR 120 mg once a day (at night) has been the only medication so far that has helped. It helps keep my BP stable and helps prevent the afib except for once since I started it. I also take Xarelto. I was on Rythmol for afib but it made me feel terrible and sedated not only my heart but my gut and seemed like everything else. They took me off it. I don't know if mine is vagal induced afib. They are still testing me to see what is triggering me. I have an idea but have not discussed that yet. Anything that produces adrenaline bursts seems to induce that. Best of luck to you ...hope things get better!

FitnessGotFibbed profile image
FitnessGotFibbed

Metoprolol crushed me, made everything worse. Threw it in the trash after a few days. Discovered flecainide and take it every night after dinner and it's helped tremendously.

Blondie12345 profile image
Blondie12345

Hello,

I have started with similar symptoms to you. Currently undiagnosed, how did you manage to get your Vagal AF diagnosis?

JoseT profile image
JoseT in reply toBlondie12345

The best is to run a monitor holter during the night. For instance if AF is waking you up in your deep sleep then ECG usually shows sinus bradycardia (slow ventricular rates) before the onset of the arrhythmia. Vagal AF = high vagal/parasympathetic tone, triggered after big meals, resting, sleeping, etc when there is vagal activity.

Blondie12345 profile image
Blondie12345 in reply toJoseT

I see great. I have been referred for a 24hour ecg.

Is sinus bradycardia and Vagal AF the same thing? I don’t know very much about this topic at all.

JoseT profile image
JoseT in reply toBlondie12345

sinus bradycardia is referred to the HR (heart rate). I meant your heart rate slows down during deep sleep and the vagal nerve is acting and due to this the atrial fibrillation is triggered (in normal circumstances is not a problem this vagal interaction with the heart but for vagal afibs is an issue).

Teresa156 profile image
Teresa156

Hi Blondie,

I saw your response come up on my phone, I’m sure Jose will come back to you, but in Spain I think it will be different to the NHS in the UK, in that they ( cardiologists etc) don’t seem to ‘recognise’ vagal afib as such. From my experience and from reading what others have written, it’s something we self diagnose based on our symptoms. You may find a cardiologist that has heard of it, but they don’t generally seem to accept it,

Saying that, I am vagal and I take a very low dose of bisoprolol only and so far it’s controlling it (so there are exceptions to the ‘rule’) but we are all different, because Afib as you know, is different for us all.

Hope this helps,

Teresa

JoseT profile image
JoseT in reply toTeresa156

correct, most of the doctors only differentiate between Paroxysmal Afib and Persistent Afib, not if the Afib is adrenergic or vagal

JoseT profile image
JoseT in reply toTeresa156

is your sleep still interrupted during the night every two hours? you should run an ECG/holter to make sure that is not the afib which is waking you up.

Teresa156 profile image
Teresa156

Jose, how are you now? Are you sleeping any better? Have you changed meds? 🤞

Teresa

JoseT profile image
JoseT

hi Teresa

I was supposed to go for a heart-ablation this week but last week when i started disopyramide (which was the first medication that has actually worked) I got very strange symptoms like pain in all my body which seems to be related to fibromyalgia. I have no explanation how this illness has suddenly started (it is such an acute onset from night to morning) but i read that a factor can be caused by extreme anxiety, stress and insomnia during a long period of time. I still havent got conformation from doctors that this is the illness but all the symptoms match. I am very sad. I hope things are better for you.

Jose

Teresa156 profile image
Teresa156

Hi Jose,

I think we must have replied to each other at the same time… I am so sorry to read your reply. So if it is fibrolmyalgia, will they not perform an ablation? I knew someone who had this condition, but they got theirs from a bad fall. I hope it isn’t that, that you have. Could it just be a bad reaction to the disopyramide? Are you still taking that? It sounds from what you say, that it could be connected?

Since lowering my dose a bit more on the bisop, I am now taking 1.25 + .28 ( measured with jewellery scales still 😃) I wake up every four hours now if I have a good night, so only once. But twice or three times if I am particularly anxious. I don’t think I’m in Afib, My Afib is so fast and chaotic, I think I’d know. If anything it’s because my HR might fall too low. It’s not easy to get an ECG monitor for that unfortunately. I do have a sleep app on my applewatch but I am scared to use it in case it does show a connection with my HR being too low, as it would make me more anxious Jose. I am very torn on what best to do.

Teresa

JoseT profile image
JoseT

Hi Teresa

The cardiologist also suspected a bad side effect from disopyramide and i stayed two days at the hospital withdrawing from the medicine but unfortunately the symptoms are still there :( . But definitely I was really having really strange brain sensations when i was taking disopyramide :((, i should have stopped it then. I wish i could take the pharma maker to court but i guess it is very difficult to prove it.

The ablation can be still performed but will require much more care, especially with the post-surgery and pain associated. So i have to wait a bit.

At the moment i am extremely sad trying to cope with the new situation. The rheumatologist was shocked when i described her my symptoms, muscle/joints aches, paresthesia, hyperalgesia and allodynia because she said those take many years to develop, it is uncommon to see such acute case. I am really shocked and sad, but i guess i will eventually need to accept this new situation. I can only give as advice to everyone in this forum, please dont stress too much yourself, AF is a really minor thing compared to any neurological issue. I really realize this now so please please dont stress too much yourself.

All the best

Jose

Teresa156 profile image
Teresa156

Oh Jose,

I am so sorry. I really hope things improve for you. I hope further tests may show it’s something else that they can cure perhaps, there is always hope.

I do wish you all the very best Jose and that you can get over all this quickly so that you start to live your life again.

Teresa

FitnessGotFibbed profile image
FitnessGotFibbed

Athlete with vagal AF here. Used to trigger AF just by sitting down at night and relaxing. Was waking up with it frequently. For me, a flecainide after dinner has helped tremendously. For trouble sleeping I used Lunesta successfully while I was building up confidence with the flecainide.

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