What's to keep NSVT from turning into VT?

[flutternutter]

Hello,

I would appreciate if someone could try to answer this question for me:

I was diagnosed with NSVT un a structurally normal heart. All tests came back fine.
Unfortunately, as many people on here, I still worry.

1) What is to keep NSVT from turning into VT in a structurally normal heart?

I know the doctors don't seem concerned as they have a better understanding of the underlying mecahnisms, and i'd like a slice of that, please.

Thanks a lot!
  

[Mom2four85]

Oh Bypeep I would demand an MRI, I knew I forgot to add something - if not tell him you're going to another doctor - he may do it seeing money fly out the door :P

Flutternutter, I'm not so certain about MRI's I'm confused what constitutes structural heart damage? I haven't found any info on a protocol dr's use to determine it.

For example - my mri showed NO structural damage LOLOL sorry I have to laugh at that...my quacks told me that, yet I had just been diagnosed with malignant polymorphic ventricular tachycardia/malignant pvc's and a cardiac cath showed an ef of 40%; cardiomyopathy and moderately elevated LVEDP - which at 34mm is considered heart failure - that's not structural?

My LV Mass, LVEDV, LVESV, Cardiac Index and cardiac output were all way off, but they still considered that "normal".  My MRI was inconclusive due to the fact I couldn't lay still since I had just had surgery and went through a few complications; it also said due to "wall motion degredation", still not sure what that meant.

I saw 4 cardiologists & 2 EP's in a year and it seems the norm for treatment.  Maybe I'm not asking the right questions or something...my case is like a jumbled puzzle - one piece over here (medical records the hospital didn't give my doctor) and then a piece over there (EPStudy results) another piece...you get the idea.

Luckily, I have new insurance starting soon and hopefully I can find the right doctor to figure out this puzzle :P

[flutternutter]

wow. Sounds interesting, in an anxiety-inducing way. LOL.

[bypeep]

Ya, I agree!  And this is one of the many questions I have for my EP when I return on 11/22.  What did the EP study really prove other than the fact that my heart was being good that particular day?  But, he's the doctor and I don't have a medical degree or 30 years experience with arrhythmia, so I'm trying - t-r-y-i-n-g - to believe him. For now, LOL.

[flutternutter]

somehow I find both of your doctor's approaches a bit weird. Not to do an MRI is odd to me, as it clearly shows any structural abnormalities. The EP Study instead suprises me if your NSVT was asymptomatic (bipeep) besides the palpitation feeling.

Lisa, what did you end up getting diagnosed with, thanks to your broken foot?

[Mom2four85]

Bypeep dont you just love when a doctor is so reassuring? [sarcasm abounding] I am still floored you didn't have something during your EP study, I really thought you would.  

I am about as clueless as the next person here and it's frustrating when I hear others say they've been treated like I have.  There have to be SOME answers to all of this madness right?

Flutternutter are you sure your pvc's and nsvt are monomorphic? I thought mine were until recently.  That's what my tests from my EP showed and I had no other multi focal pvc's until I got the test results from the hospital where I was in the ER and a ton of tests done.

How do we really know our hearts are "structurally" normal if things like I had listed aren't considered abnormal? I don't understand it, Ive read, researched and asked a billion questions, but apparently no one knows that answer.

I've fainted and have pvc's, sob and CP since age 9, I've not had one dr until age 42 show any concern over any of this - even in 2007 when my ekg's showed very frequent bigeminal pvc's.

Somehow, I think dr's are missing the boat on some of their research and concern over patients and symptoms.  Had I not broken my foot in June 2009 and gone to my pcp, I would have died - that much I was told, and I was healthy as a horse they told me.

[bypeep]

My EP was really vigilant at first.  He wanted a stress test, an MRI, etc.  Then I had a non-inducible EP study and I am suddenly back at square one.  He doesn't think it's necessary to do an MRI now.  I still have no answers really.  I have PVC's originating from different parts of my ventricles and a documented 9 beat run at about 180 bpm. I have couplets coming from somewhere else.  He doesn't know where any of these are actually coming from because he can't pinpoint them based on the 2 lead cardionet that caught them.  I get some really strange sensations and I worry excessively.  When  I first went to see him he told me that echo's weren't the end-all be all in diagnosing structural problems that could lead to or exacerbate electrical problems.  As far as I can tell, an EP study tells little about heart structure.  And, since my heart was perfectly angelic that day, I may never know now.  Really frustrated and down about the whole thing.  I have read too many articles and case studies about non-inducible EP studies not being diagnostic or prognostic.  

All I had was a normal echo and EP study.  The EP study lasted for about an hour and he gave me the adrenaline during it so he thinks that was equivalent to a stress test.  

When I was back in my room after the study I said to him, "Do I need a defibrillator" and he chuckled at me and said "no."  

How do they know it was monomorphic based on a holter?  Mine said it was impossible to tell that for certain because there aren't enough leads.

[flutternutter]

Bipeep,

Yeah, Thyroid, bloodwork, EKG, Echo, Chest Xray, Stress Test, Cardiac MRI to check for ARVD and the likes, all came back perfect.
Wow, so your EP reacted very reassuringly huh?? You mention you've been having issues since you were 14, what all did it turn out to be? Is your heart structurally healthy?
I wonder why they wanted to do an EPs, my EP didn't even consider it, especially after the MRI. My NSVT was monomorphic though and we didn't capture a single PVC or PAC in 40 days. I wonder if that makes our cases so different?  

[bypeep]

Flutter,

LOL, wow.  Your description of the recorded NSVT is nearly identical to mine.  I had my 30-day monitor on for 29 days and all they'd found were PAC's, and a few single PVC's.  My recordings seemed to match what my cardio expected to find, "just some PAC's that are of no consequence." Ha!

The day I recorded my NSVT I was just sitting around at the computer, completely relaxed.  Then  I felt this huge THUD (just one) and what seemed like a slight pause, then another THUD.  I thought that I'd had a couplet or two PVC's within a few seconds of each other.  Never felt anything else except for some pressure up into my throat and head.  So I call it in, thinking it's nothing and I expect to hear beep...beepBEEP....BEEP...beep...beep - but nope.  I hear these quick consecutive beeps and I just knew.  9 of them in a row.  Scared the poop out of me.  

My cardio had already spoken with an EP doctor before I went in for my appt the very next day and the EP wanted a study done within 2 weeks.  They seemed really concerned.  The EP especially.

Trouble is that my study went beautiful and I didn't even throw a single PVC on my own during it.  Well, after they'd disconnected me from the monitors I had a bunch, but they weren't concerned.

I know that I have PVC's coming from at least 2 different places in my ventricles and that's probably what bothers me the most. But, since they've never been able to catch them on a 12-lead ECG, I guess that they just ignore this fact. I've read too many of Lisa's posts, LOL.  Do you know where yours are coming from?  

Here's what happened at my cardio:

I went in and started freaking out when I saw my NSVT strip.  I asked him if he'd ever seen anything like it and he told me:

"Three times and all three were sustained."

"Did they die?"

"No, they presented in the ER with palpitations and all had successful ablations."

"Will mine sustain? Where is it originating from"

"You're asking me questions that I can't answer with any sort of certainty."

Then he went on to tell me that with a normal heart, even sustained VT isn't necessarily fatal.  I felt sooooo much better.  /sarcasm

I get two other strange rhythms, neither of which have been caught.  I have no idea what they are but they scare the crap out of me too.  When I go back in next week to my EP I think I'm going to bring up the possibility of an implanted loop recorder.  I'm sure he'll chuckle and tell me that I need valium more than that though.  

My EP has decided that my hormones are contributing to this condition and I'm also thinking that it has something to do with my thyroid.  I'm perimenopausal at 36 and this NSVT thing seems to come on at ovulation and menstruation primarily.  

I had a really bad summer with my heart, but my TSH level had completely bottomed out from June to September and I was having other weird symptoms like night sweats on ovulation, weight loss, constant caffeinated feeling, sleeplessness - all of which correlate to hyperthyroid which can be a culprit in this.  Now I'm in a sluggish phase and I can't get enough sleep and my body feels like it's in slow motion.

Have you had your thyroid checked?  

[Mom2four85]

sorry I can't help much, I have the same questions and haven't gotten many answers in 16 months...I will always wonder what the heck happened to my "normal" heart...not one doctor can answer this - I guess I expect too much of the medical profession and have been told medicine is not an exact science :P

I dont know what happened to me, what did I do or not do to make this happen, what changed in me or what my body that is hiding and no one can put a finger on, to make me go from having pvc's and non sustained vt and regular tachycardia/bradycardia episodes to something dangerous, malignant that can kill me? I developed structural problems only after I had all of my testing done, probably in a 5-6 week time frame before my ablation...why; what caused this...

It's frustrating, but the only way I know they found mine out was with an ablation. The only way to point to anything dangerous I've been told is the morphology in which the they present on ekg's and other tests.   I believe my dr thought I was going to be an easy case and he'd go home after and be on to his next patient - instead, he was left wondering what did he miss, what did he do wrong, what did he not find or what piece of the puzzle was missing for it to all click together.

I was the cardiologists worst nightmare - Sudden Death From “Benign” Ventricular Arrhythmias http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1475953/  are they really so "benign"?  

I had things wrong on my echo & stress test they could not explain and I was told I had no structural damage...but I question that also - isn't mild valve damage TR/MVP; LVH, Dilated left atrium "structural"? If not, what constitutes "structural" ...

I've been left putting pieces of that puzzle together for 16 looonnng months.  I just found out the hospital that did my EKG/CT's and Chest Xrays did not forward their info to my ep or cardiologist as requested.  

In those records I found quite a bit of info that the hospital should have sent to my dr's; and may have helped in a diagnosis -  this included a note - suspicous CP & CHF symptoms [huh?!] that's just another thing I wasn't told. Don't you think if they thought I had congestive heart failure my EP would want to know before he did surgery?

This is one reason why I always suggest to get a copy of every test you have done.

now, will the fact that I was having multi focal pvc's BEFORE ablation make a difference? nahhh, not now it won't but it will for my next doctor... neither does the fact that their tests also show heart enlargement and vascular crowding as well a few other  details that may or may not have pointed to something for my doctor to see a full month before my surgery.

Again, I really think it all depends on where the arrhythmia's originate - the morphology of them that makes them dangerous BUT what changes them? I've found nothing that points an answer and that question will remain until I find the answer =)

[flutternutter]

Oh and yes, I'm on Metoprolol 12.5mg twice a day, and 500mg Magnesium and I haven't had anything since, but then I don't get them often to begin with, about once every 2 months....also no PVCs that I know of.

[flutternutter]

Thanks Bipeep,

I keep wondering whether I'm a simple health-hypochondriac who blows things out of proportion or whether I am a pioneer who discovered the true potential for danger when nobody else noticed,haha.
I know a lot of fellow sufferers on here have a hard time letting the NSVT go, but I also assume that we belong to a part of the population that is less stoic and poised.

The line is always "the possibility of it turning into VT is very unlikely" but they never say "impossible" so I wonder what makes the difference? I have yet to figure out how to ask an expert this exact question.
I also find the symptoms very confusing, my recorded 7-beat run of NSVT was two strong consecutive THUDS, whereas a week prior I had an episisode that was much more unsettling but nor recorded. The scary one was just a flutter, jello-like random thumping for what seemed to last a lifetime, yet must have been just 4 or 5 seconds, followed by a pressure-rush to my head.

I swear since I was diagnosed, I have not been able to resume my life like I used to live it, it's like I hold my breath waiting for it to happen again. It's insane. If I was sure it couldn't harm me I'd eventually learn to deal with it, I'm sure. But unfortunately a bit of a question-mark remains and my brain gets hung up on that.

If anybody on here knows anything else, please post away. After all, living in anxiety cannot be a long-term arrangement for this issue.

Thanks

[bypeep]

I think this is the question that all (or most) of us diagnosed with NSVT grapple with.  Perhaps others who share you diagnosis could reassure you by letting you know how long they've dealt with the problem without it turning into something horrible?  That's pretty much how I cope.  I read this board and others and see others with NSVT and are heartened when they keep posting, LOL.

I've had NSVT since I was 14 though it wasn't diagnosed until this August (22 years later).  I always knew something was more wrong than they told me - they kept assuring me that all I had were PAC's or SVT.  My only issue is that the runs are longer now than they used to be and this is something that bugs me because I feel like that has to mean something.  My EP disagrees.  I actually had a non-inducible EP study back in September of this year and will be returning to my EP for a follow-up on 11/22.  If you have some specific questions, I'd be happy to write them down and take them along with me because I have about a hundred of my own.

Are you on a betablocker?  I don't really notice that the bb stops it, but it seems to make things less annoying at times for me.

I wish you well.