Skips/Ectopics/PVCs every single night

[MTRJ75]

Hi all,

As this is my first introduction to the community, a small bit of background (it's not all necessary reading for my ultimate concern, but I like to give all potentially relevant information): 

- 44 M

- First started experiencing inflammatory/AI symptoms end of 2012/start of 2013. Turned out to be Sjogren's, which I'm on medication for, but still not properly diagnosed and accepted by all DRs I see (and there have been dozens over the last six years) due to still not showing up for bloodwork. 

- First started experiencing cardiac symptoms (tachy) with a couple of ER visits in the first half of 2017. The first was put down to dehydration after the last night of drinking for me. 

- Last year, I was forced to quit exercising because I was shaking/trembling after every workout, even after cutting workouts I'd been doing for years in half. Also experienced skipped heart beats after workouts or even after mowing the lawn. They were always activity/exertion based and I almost always felt a tug in my throat before they occurred, which I associated with the Sjogren's (dryness), though I was never sure how and couldn't get any doctors to confirm. 

- Finally convinced the cardio to do a stress test (I'd had one in the past that came back questionable, but eventually a Cardiac MRI and several other tests cleared me). Even before we started, hooked up to all the wires, she walked in the room, and told me as soon as I stood up, my heartbeat went to 130. My as needed beta-blocker became my daily medication and since then, I've had several dips and spikes in BP and heart rate with a few more ER visits, but at least the heart "rate" is stable now. 

- In October, I had my first real complete autonomic crash. I was sitting on there typing for work (thankfully able to work from home) and I couldn't hold my arms up any longer. Almost instantly, I was nauseous and drenched in sweat and could barely sit, let alone stand.  I vomited several times that night, sure I was dying. This happened several times over the next week whenever I tried to even sit up for too long. 

- I've improved quite a bit in that aspect since then, though did have another crash in December. Can get up and walk around and take the dog out, do minor things, but still pretty much house bound and need to limit my standing physical activity on a daily basis or pay the consequences. 

The interesting thing about all this though, is once I was knocked off my feet, the ectopics immediately went away. Makes some sense because I had rarely gotten them just sitting or lying down. 

On and off in my journey I've had various sleep problems too. Mornings have been pretty vicious for the last five or six years, but I had mostly been getting to sleep okay lately. If I had a disturbance, it would last a couple of miserable nights, but mostly return to normal, as I've taken to meditation and stress elimination practices. 

However, a couple of weeks ago, I started trembling (throat and chest) while lying down, which set off the pounding heart beat. These are all common symptoms for me and basically my most concerning ones over the last year or so. This set off a several night stretch with the same event for about a week. The trembles have ceased (at least upon attempting to sleep) after that week, but what started happening about half way through (actually exactly on 6/7, so 12 days ago today) and has occurred every single night since...the skipped heart beats/ectopics are back. They now come on every single night somewhere between 8-10 pm, get worse when I lie down and last for about an hour or two after waking. 

They go away mostly during the day or at least lessen, but then come back now every single night. Lying down, I'll now get them around every minute through the night. If I lie down during the day, I don't get them usually. Yet, they will start every single night like clockwork and get worse when I go to bed and I absolutely can't figure this out. 

I'm scheduled for a holter (have done a couple in the past) at some point in the next week and have asked for another echo, but the cardiologist doesn't seem too concerned (of course not, it's not happening to her). 

After all that rambling, my current concerns are (yes, I've asked the doctors too, but without any answers): 

- Considering it's now very difficult to get blood out of me and the cardiologist suspects I have low blood volume issues now, can this be an issue of not enough blood reaching my heart? (The cardiologist says that's less likely lying down than standing up, but I'm still confused.)

- If this is just another symptom of my autonomic nervous system acting out, might it simply randomly decide it doesn't want my heart to beat at all anymore? Has anyone even ever heard of that happening with this condition? 

- At least when they were happening in the past, I'd convinced myself I was irritating my vagus nerve.  Can I be doing this lying down, through digestive issues? (I do often feel trapped gas in the chest when these come on, but which is the cause of which?)

- Or is it simply just another harmless learned response by my broken nervous system that be unlearned or may just go away as quickly as it arrived? 

To be honest, the more of these I have, the less each individual one seems to panic me, but I have to admit the circumstances and consistence of these current events kind of has me freaked out because I can't figure them out.  

Thanks, 
Matt

[Pistol]

1 hour ago, MTRJ75 said:

If this is just another symptom of my autonomic nervous system acting out, might it simply randomly decide it doesn't want my heart to beat at all anymore? Has anyone even ever heard of that happening with this condition? 

Your heart will not just stop beating because of dysautonomia. If there are any issues with potentially serious arrhythmias hopefully they will show up in the heart monitor that is ordered for you. Make sure yo push the button every time you feel something irregular in your heart!

[MTRJ75]

Thank you Pistol. I wish the doctor could have answered the question the same way you did. I may have gained a few hours sleep if she had. 

That's another thing I'm going to have to ask. I remember having to note every incident, but this time around I may be clicking several hundred times. And if I'm lucky enough to sleep that night, I'll surely miss a bunch. 

[Paula L]

Matt, I will share an experience I had with a 24 hour Holter monitor and a ph test (to measure ph in esophagus), each done at different times. I get ectopics too (PVCs and PACs). Based on the notes I kept of my palpitations, my Holter monitor showed that I have far fewer ectopics than what I reported. Note that I also included in my notes whether I had heartburn, GERD, or had to burp each time I recorded a palp. The reason I did this is because I suspected that some of my palpitations are originating from my esophagus and not my heart. Coincidentally, I also had a ph test around that time which also required that I write symptoms I experienced such as heartburn, GERD, gas, etc. Since the test didn't record palpitations, I also wrote down when I felt a palpitation with a symptom. After reading the results, the doctor told me that every time I recorded a palpitation, the ph test said I had an episode GERD. That proved to me that all of my palpitations weren't from my heart. That knowledge and proof helps me a great deal with the anxiety I sometimes get when I feel palpitations. If I have heartburn when I go to bed I sleep propped on pillows to calm down the "palpitations," which are actually movements from my esophagus. If I lay on my side it's worse, so I'm stuck falling asleep on my back. I was on a fodmap diet for a while and my  palpitations went down tremendously.

[Pistol]

@Paula L - that is very interesting, thank you so much for sharing!!

9 hours ago, MTRJ75 said:

I remember having to note every incident, but this time around I may be clicking several hundred times

@MTRJ75 - I had 4  30-day event monitors and an implanted Loop recorder, so I am quite familiar with these things. On my first two monitors I pushed every time I had several ectopic beats and my results were - well, quite long once printed out. Every time you push the button the screen should ask you about your symptoms, which often I did not have any. They did catch several syncopal episodes but I of course cannot push the button when unconscious, 😀, so I pushed it immediately upon waking up. It is OK if you push the button frequently, that way they do not miss anything. Also - if you feel dizzy or have chest pain but do NOT have palpitations still push the button. Some arrhythmias are silent and you may not be aware of them. But most monitors can detect arrhythmias on their own, even when you are sleeping. I had several episodes of atrial flutter and never pushed the button ( because I did not feel them ), but they were recorded automatically. So - don't worry, push as much as you need to and sleep well, the monitor will record for you. Good Luck!!!!! 

[MTRJ75]

Thanks @Paula L I have wondered if this might be an issue. My diet has been nearly perfectly Paleo for years now and I can't associate symptoms with any specific foods or even eating at all, but I haven't tried FODMAP yet. Also, whenever I suspect the palpitations might be esophagus related, I'm still feeling the gap in my pulse either in my wrist or neck. 

That's a good thing @Pistol and I think I remember it picking up some stuff I didn't even not last time. Insurance won't cover anything more than a single, simple day Holter at this point. I don't remember it even having a screen.  For sure, I'd rather over-note than under-note my symptoms while I'm wearing the thing. 

[MTRJ75]

A short update on this with the even shorter version on the bottom: 

I had begun Fludrocortisone/Florinef at the smallest dose a few weeks before all this began. We (the cardiologist & I) thought it might be a good idea to come off it for a while. Two days after stopping the medication, the night & morning skips stopped. Over the next week, I still have a couple days where I might have felt 10 total. I'm positive the medication contributed either directly or perhaps by causing gastric distress/some bloating, which I noted as a minor symptom. 

So I cancelled the Holter, which was good because I didn't have any events the day I was supposed to wear it. 

However, woke up Friday morning with a couple of skips and then that night and yesterday morning they were back again. A little more forceful last night (Saturday). I would still call it dozens rather than hundreds like in my original post. Now I'm wondering if these have been caused by gastric issues too...or if the ectopics are the ones causing the gastric issues because I can have the gastro stuff without ectopics, but the ectopics are always followed by a lot of burping and odd upper digestive "noises". I'm now questioning which is the cause of which. 

Anyway, none this morning or tonight so far. Let's hope it continues (but I did have the longest case of hiccups I've ever had tonight). Considering I can only get a single day Holter from insurance it would probably be the worst thing if they were occurring frequently and unpredictably now.  I see the cardiologist in a month again, so we'll see if I can hold off on bothering here again until then. 

The super short version: It may have been the Florinef causing gastric issues, which in turn caused the heartbeat issues. 

[JennKay]

@MTRJ75 -- I know this is a couple years old, but did you ever figure out the nightly ectopic issue? My experience with dysautonomia started with a week of intense ectopics and adrenaline surges about a year ago. After that week, they subsided substantially. I tried multiple beta blockers and they help, but don't eliminate the PVCs.

Recently, in the last 3 weeks, my PVCs have returned with a vengeance and are probably more frequent than my initial experience with them!! And, they are also worse (1 happening every 10-20 seconds) starting about 9pm until about 9am. I don't tolerate beta blockers well, but thought I would give propranolol a try since I don't really want to start a stronger antiarrythmia drug like flecanide. The propranolol helps a little, but I wish it would help more. I actually think the propranolol helps with my other random symptoms substantially (twitiching, tremor, migraines, tachycardia), so I cant complain about that...but, I'm so sick of dealing with PVCs! 

Just curious if you ever figured out the trigger for yours when they happened regularly at night. Did they ever stop? Did they stop randomly? Did you find a drug or lifestyle modification that helped? I am convinced mine are driven more by my parasympathetic system, but no doctor I ask has an explanation for me.

[MTRJ75]

Never figured out a trigger, but they've declined substantially over the last year or so. They can still easily be trigged by diet, congestion or getting my heart rate up, but I can't figure out what exactly helped diminish them. I did start Ivabradine/Corlanor about a year or so ago too, so there may be some connection there, but I don't think it was immediate. LDN has helped in some areas, not sure if this was one. 

[JennKay]

@MTRJ75 -- my EP suggested I try Corlanor with this recent uptick, but I have a pretty low pulse normally, 60ish, when not having regular adrenaline surges so I'm hesitant to give it a go. That, and I had issues with long QTc in March of this year. I know the EP wouldn't intentially prescribe something dangerous to me, but I thought I saw that Corlanor can prolong the QTc interval.

Did you start Corlanor for tachycardia? What dose do you take and how often? And, what is LDN? Thanks for entertaining my questions 🙂 

[MTRJ75]

I was prescribed 5 mg, but have been snapping them in half, taking 10 mg Propanolol early in the day because my BP tends to run high & the 2.5 mg Corlanor in the eve w/ dinner. And then rarely an extra dose if necessary during the day. 

LDN = Low Dose Neltraxone - there are several threads here and throughout the internet on it. Seems to help a number of conditions in different ways, but hard to pinpoint exactly how. 

[JennKay]

Thanks for sharing, @MTRJ75. I think I need to increase my propranolol to see if this helps. I know this is what my EP will tell me when I call his office today. Last night,  the PVCs were ridiculous. I was definitely in bigemeny continuously for about an hour. It is so uncomfortable and makes me dizzy. They are frequent again this morning, but hopefully that will subside in an hour.

I found this article about nighttime PVCs: https://pubmed.ncbi.nlm.nih.gov/32067918/

Based on the abstract, seems like the authors found patients with frequent nighttime PVCs had greater sympathetic tone as measured by SDNN. Encouragingly, after ablation the SDNN was less biased.

Were you ever offered an ablation for your frequent PVCs? I know they are contraindicated in dysautonomia, but being in bigemny for extended periods of time has to qualify a person for an abaltion!!

[MikeO]

32 minutes ago, JennKay said:

I think I need to increase my propranolol to see if this helps. I know this is what my EP will tell me when I call his office today

Seeing that the PVC's are causing symptoms (dizziness) i would inquire about doing a 48 hr heart monitor just to see what is going on. I would be surprised if an EP would move forward with a ablation with out more data first. 

[MTRJ75]

4 hours ago, JennKay said:

Thanks for sharing, @MTRJ75. I think I need to increase my propranolol to see if this helps. I know this is what my EP will tell me when I call his office today. Last night,  the PVCs were ridiculous. I was definitely in bigemeny continuously for about an hour. It is so uncomfortable and makes me dizzy. They are frequent again this morning, but hopefully that will subside in an hour.

I found this article about nighttime PVCs: https://pubmed.ncbi.nlm.nih.gov/32067918/

Based on the abstract, seems like the authors found patients with frequent nighttime PVCs had greater sympathetic tone as measured by SDNN. Encouragingly, after ablation the SDNN was less biased.

Were you ever offered an ablation for your frequent PVCs? I know they are contraindicated in dysautonomia, but being in bigemny for extended periods of time has to qualify a person for an abaltion!!

No. No ablation, but bigemy wasn't extended. Upping propranolol usually isn't the answer. In fact, lower doses are recommended (and in my case lower doses work better than higher ones too) in POTS. 

[JennKay]

@MikeO -- Yes, am trying to get an appointment for a monitor. A request has been submitted but, you know, it can take a while to get an appointment. I called yesterday and I'm sure I will have to call again tomorrow for an appointment sometime next week. By that point this may have all passed (hopefully!!) which is super frustrating. 

@MTRJ75 -- I was only taking 5mg of propranolol 3-4x each day. This seemed to be helping for about a week, but maybe my body got used to this and readjusted? My pulse has been around 65 at 5mg w/o the side effects I had on metoprolol and atenolol. Both of those I took at low doses, 12mg metoprolol and 1/4 tablet atenolol, and both dropped my BP too much.

When I spoke to the EP's office this morning they said to try 10mg morning and evening. This is still a pretty low dose, no? They also said to add the Corlanor at night. I think I am going to try the 10mg propranolol alone first so I know if this helps any. You only need 10mg propranolol in the morning? Does it wear off by the evening? 

[MTRJ75]

Yes, I think 60 mg is the standard dose, so anything around 20 or lower is low enough. 

That's what I do - 10 mg P in morning, 2.5 mph C in evening - but if you have problems w/ low BP, Corlanor does not affect BP and won't lower it further.