Vagal mediated ectopic beats?

[JennKay]

Hi all! This is my first post, although I have been reading through many of your discussions since my ordeal started this past June.

In short, out of what seems like no where, I started having episodes of bigeminy and trigeminy with sporadic adrenaline surges. I've had an echo, EKG, Holter, and long term event monitor. Almost everything has come back normal, except the ectopic beats and a short run of NSVT which multiple cardiologists have said is fine since my heart is structurally normal. My ectopic burden on the Holter (done in June) was 3% at its highest. However, my ectopic burden on the event monitor (done in August) was <0.01%. I have tried metoprolol and antenolol, both of which I did not tolerate. In fact, I suspect they were causing most of my POTS-like symptoms (adrenaline surges, hypotension, tingling hands, brain fog, dizziness) since most of these symptoms improve or fully resolve when I stop taking the beta blockers. Anyway, I finally found an integrative cardiologist who works with dysautonomia patients and he performed an ANS test, the report is called TM-FLOW. Again, almost everything was normal, except it says I have vasovagal syndrome. I've never fainted before, but I have struggled throughout my life with hypotension and am easily nauseated, which I now suspect is the result of my elevated parasympathetic vagal activity. 

So, my question to you all is, does anyone here have ectopic beats that they believe are mediated by vagal nerve activity and how do you deal with these? If so, what do you do to treat this? Am asking because the ectopics drive me absolutely crazy and I never want to try another beta blocker...ever!

[sunbun]

Its so funny you mentioned this, I’ve been getting ectopics for years (the pause then big THUMP types, which I don’t pay any mind to anymore as I’ve been having those for a decade) However on Tuesday while doing some crunches in bed I suddenly got a run of fluttery heartbeats that lasted about 10 seconds and scared the absolute crap out of me. Got an ekg an hour or so later and nothing showed up. I suspect I may have vasovagal syndrome too. 

I definitely notice my ectopics are way worse when I’m doing something that stimulated the vagus nerve. Which isn’t hard as I have a hiatal hernia that constantly tickles my diaphragm and vagus nerve. Whether it’s a heavy meal, spicy food, sitting or laying in a position that puts lots of pressure on my diaphragm, tensing or clenching my stomach when nervous; going to the bathroom etc. And as I was doing crunches with pressure on my stomach and vagus nerve I think that’s why I got that weird flutter. Nothing helps except completely relaxing my stomach muscles and trying not to think about them! They’re also particularly bad when I haven’t slept or during my period. Basically anything that makes you relax will soothe your vagus nerve and help stop it tickling your heart. Adrenaline rushes will stimulate it and make the ectopics worse.

It’s great news that your heart is structurally normal and your cardiologist isn’t worried. However I know how scary these ectopic can be. Can I ask if your NSVT or trigimeny makes you symptomatic and if you can feel these runs at the time? Are they like a row of the typical skip-then-BOOM beats? Do they feel like a row of fast hard machine gun type beats? Or are they a light fluttery sensation? 

[JennKay]

Thanks for the response! Your experience sounds like mine. My ectopics get worse after a meal, before having to go number two, around hormone changes in my cycle (ovulation in particular), basically anything that requires or increases vagal activity seems to set them off. In fact, when this all started, the bigeminy and trigeminy would only happen at rest. I didn't understand this, but I now suspect it was triggered at this time because this is when my vagal activity increases (to decrease my heart rate when sitting down). Even now, when I feel a few ectopics in a row, if I get up and walk for a bit, this will break the cycle.

I felt the NSVT on my long-term monitor. I reported it as "fluttering/skipped beats," but honestly I didn't remember one trigger from another trigger during the 3 week monitor. I do feel the bigeminy and trigeminy, it has the pattern you describe, a normal beat, a normal beat, early beat, longer pause than normal, then the cycle repeats. I tend to notice the early beat more than the first beat after the early beat where it should be stronger than normal. I sense to be sensitive to the disruption in the regular heart beat pattern.

This paper seems to confirm that vagal activity can generate PVCs and that ablation can often address this issue -

https://www.frontiersin.org/articles/10.3389/fphys.2021.653225/full#S1

It is nice to know that this exists and appears to be effective!

[Sushi]

Hi JennKay,

I also have problems with very high vagal tone—all my episodes of arrhythmias happen at rest and autonomic testing showed very high vagal tone. I did respond well to Strattera which increases norepinephrine in the synapses. I now need to take an antiarrythmic medication because I have also developed Afib, and of course this also stops the ectopics but is a very big hammer for just ectopics. You could discuss ablation with your cardiologist though this is also a fairly big hammer. Best wishes!

[JennKay]

Thanks, Sushi! Did the Strattera help with the ectopic beats, or was it mainly improving the symptoms associated with your elevated vagal tone? I have also wondered if something like this would be helpful for my symptoms. 

And yes, I agree about the ablation and antiarrhythmic being big hammers for ectopic beats. The first cardiologist I saw when all of this started said the same thing and that no treatment is necessary but I decided to try metoprolol anyway. I wish I would have passed on that b/c it definitely caused more issues. I now suspect the issues I had on beta blockers were due to my elevated vagal tone - the beta blockers essentially left my vagal activity fully unopposed! Bad idea...

Do you think you developed afib b/c of your elevated vagal tone?

[RecipeForDisaster]

I have lots of PVCs and bigeminy, which are bothersome. They went away during my exercise stress echo. I am on 2 different beta blockers, one in the morning and one at night, and the night one (metoprolol) is a higher dose. If I go too high (they are trying to increase my dose because the pounding is so bad), I get a lowered HR and a lot more bigeminy. The morning one (acebutolol) is not a high dose and it helps a lot with the PVCs. I was offered ablation and anti arrhythmics. I got put on acebutolol for my HR going to fast, and it happens to suppress ventricular arrhythmia as well. I’m on a 30 day monitor again now… 

[JennKay]

Thanks for the response, RecipeForDisaster! Sorry to hear you have to deal with these too. They drive me crazy!

I don't know for sure what triggered my initial episodes of bigeminy and trigeminy, but looking back I think it may have been a combination of job related stress, summer heat, and me not knowing about my vagal overactivity. I wasn't on beta blockers when they occurred initially. However, when I was taking 12.5mg of metoprolol, my heart would beat hard (like a pounding I could feel in my chest at a low heart rate for me, in the 50 bpm range), I would get chest pain, it would be difficult for me to breathe, and my hands and feet would tingle. It was super scary. Then, I started getting 3am adrenaline surges where my heart would jump to 130 bpm while I was lying flat in bed and my whole body would start shaking. I've read other posts here where people have very similar adrenaline surges, which is how I figured out what they were. The adrenaline surges prompted the 3-week event monitor b/c the cardiologist wanted to see what type of tachycardia I was in at 3am - it ended up being sinus tachycardia. 

Most of my symptoms have slowly gone away after stopping the beta blockers. Although, I still wake-up a night (which I have read here is not uncommon for people with dysautonomia) and the PVCs and PACs still occur. I've asked a few different doctors about the night waking, b/c I have seen so many at this point, and some have said I am sensitive to the natural circadian release of adrenaline in the early morning hours, others have suggested a sleep aid, one even suggested behavior therapy. I'm thinking the night waking is related to my vagal nerve issues, just don't know how to address it besides trying not to get overestimulated before bed.

[MikeO]

I have been dealing with funky heart beats for years. My Cardiologist does not get overly concerned with PVC's or PAC's (unless they occur in the tens of thousands) or heart rates in the 130's (they do get concerned once you start getting up around 160) He does agree that these can be bothersome. 

I can't say my beta-blocker actually helps but either way i need it. We have tried a few different ones i.e metoprolol, carvedilol etc....each does make me feel a bit different. The metoprol i felt more palpitations.

One thing that helps is recognizing some of the triggers. Alcohol can trigger these (i see it in cardio rehab all the time. Folks that drank the night before get the pvc's) Stress or getting overly focused on them can agitate them as well. I have even seen a change in coffee brands spark them off too.

On my holter monitoring the early morning tachycardia runs have been seen but don't last long so again there is no physical intervention that makes sense to do.

What has helped me as well is a home heart monitor (sanity check) I found it helps to see what is going on when i feel something and takes the anxiety out and reassures me that all is normal.   

[JennKay]

Thanks, MikeO! Which home heart monitor do you use? I have a BP cuff and older Fitbit watch, neither capable of doing an EKG. But, I see some of the newer Fitbit models do have EKG capabilities now. 

[MikeO]

@JennKayI have the Pulsebit EX. I know there are a bunch of home monitors out on the market that work just as well. 

[MTRJ75]

Interesting stuff. My PVCs are most active when allergies are worst (nose/throat all the way down to stomach clogged), like today. I've been told several times why that may be, but my body still reacts anxiously. Not so much to the single ones, but the sequences that last more than a single blip. 

I've never connected vagal tone with it. 

Have also read that ablations are not recommended for POTS patients in most cases. 

[MikeO]

55 minutes ago, MTRJ75 said:

Have also read that ablations are not recommended for POTS patients in most cases. 

Just like the afib folks only way you will get a ablation while on the table is if you are presenting. If not the procedure will be aborted. I have seen this many times.

[MikeO]

@JennKayHere is a lead 1 strip from my home heart monitor catching what i think? is a Ventricular quadrigeminy. I do get these when i am having a flare up.

[Sushi]

On 11/20/2021 at 6:37 PM, JennKay said:

Thanks, Sushi! Did the Strattera help with the ectopic beats, or was it mainly improving the symptoms associated with your elevated vagal tone? I have also wondered if something like this would be helpful for my symptoms. 

And yes, I agree about the ablation and antiarrhythmic being big hammers for ectopic beats. The first cardiologist I saw when all of this started said the same thing and that no treatment is necessary but I decided to try metoprolol anyway. I wish I would have passed on that b/c it definitely caused more issues. I now suspect the issues I had on beta blockers were due to my elevated vagal tone - the beta blockers essentially left my vagal activity fully unopposed! Bad idea...

Do you think you developed afib b/c of your elevated vagal tone?

Hi JennKay,

Sorry, I missed your reply. I you tag me or quote me, I’ll get an alert.

Strattera helped with all my symptoms but since it increases norepinephrine levels could be a problem for those who already have high levels. 
 

Another thing about metropolol is that it is contraindicated for those who have the CYP2D6 genetic polymorphism. It is relatively common and I have it, so I was given other beta blockers.

Re. developing Afib, my electrophysiologist thinks it was because of dysautonomia and that makes sense to me too. Another thing to be alert for!

On 11/21/2021 at 1:23 PM, MikeO said:

Just like the afib folks only way you will get a ablation while on the table is if you are presenting. If not the procedure will be aborted. I have seen this many times.

With Afib, an experienced electrophysiologist will provoke it while you are on the table and then ablate it. I really hope I can avoid an ablation though as some with Dysautonomia report that it can create other problems.
 

[JennKay]

@Sushi- Got it on the tagging! I am new to posting, but am getting the hang of it now.

I see on the Strattera regarding the high norepinephrine levels. I have had my metanepherines (blood levels) and norepinephrine/adrenaline measured by a 24hr urine collection. My norepinephrine was in the normal range and my adrenaline was undetectable in both assays (at least below the measurement thresholds used by Quest). I have always wondered what the low adrenaline levels indicate, or if this is "normal". I will ask my cardiologist about this at my next appointment. 

And that stinks about afib likely being related or caused by dysautonomia. Yes, your are right. Another thing to keep in mind! Did you figure out you had afib b/c you sensed something was off or was it found on a monitor? I sometimes wonder if beta blockers cause afib or even some of the other symptoms we deal with - I know these drugs are very useful for some, including some with dysautonomia, but since they mess with the adrenal hormones I won't be surprised if they through things off in other parts of our bodies too.

@MikeO-  that is nice that you can see the premature beats on your home monitor! At least you know what it is and that it isn't anything more serious. I definitely recognize that pattern. I wish the home monitors could tell us if these are PACs or PVCs, not that it matters I guess. For me, the PVCs just make me a little more nervous. Although, not sure if that is a reasonable fear or just me being weird about it.

[Sushi]

1 hour ago, JennKay said:

@Sushi- Got it on the tagging! I am new to posting, but am getting the hang of it now.

Great, thanks!

1 hour ago, JennKay said:

Did you figure out you had afib b/c you sensed something was off or was it found on a monitor? I

Well, I didn’t figure it out! I just knew that I felt absolutely ghastly and that my pulse was 180 and irregular that and my BP about 170 over 130. I called my PCP and she told me to call an ambulance or go right to Urgent Care. Being a wimp about ERs, I managed to drive to a nearby Urgent Care. They put me on a monitor, started an IV and called an ambulance. The ER was great. I told them I had Dysautonomia and they knew the basics about it and gave me an antiarrythmic. By the way, my Electrophysiologist asked a well-known cardiologist who knew a great deal about Dysautonomia and she also agreed that, in my case, Afib was most likely caused by Dysautonomia. 

I now have Kardia monitor that I keep in my handbag (it is about the size of a credit card) so I can take an ECG in a minute. It tells you Normal, Possible Afib, Tachycardia, Bradycardia or unclassified. They are about $75 and let you email the reading to your Cardiologist or PCP. My Electrophysiologist has always responded within minutes which is really reassuring.