NSVT and Anxiety, now that I know these skips are NSVT - help?

[nervouslady]

Hi all,
I am trying to chill out about my recent diagnosis of NSVT.  I posted earlier about how I've had these flutters and crazy flip flops for several years now.  Everyone told me they were nothing to worry about (though never did any testing to find out what they were).  I finally found someone to look into it and was floored when I heard that it was nonsustained ventricular tachycardia.  I understand they are potentially deadly.  I just got an arrhythmia - just one hard thud, so I think it was a PVC, but holy cow I jumped out of my seat and had to take a xanax.  I am freaked out.

Am I being a hypochondriac or is this happening to others out there with ventricular arrhythmia?  Any reassurance or stories would really be appreciated right now.  I met with an EP at my cardiologist's clinic and he scared me so much that I'm off to the Mayo Clinic for a second opinion.  They got me in very quickly - this Friday!  Until then, I'm trying to chill but not doing a very good job.

Thanks
Mary

[nervouslady]

Frenchie - how long did your runs of NSVT go for when you were pregnant?  Was it just a short bout or did they go longer?  I'm nervous because when I was (briefly) pregnant, mine lasted long enough for me to sit up out of bed, stand up and pace the floor a couple of times.  Must've been at least 20 seconds.  I'm scared that, with pregnancy, my NSVT would turn to VT.  So when yours got 'worse' was it just more frequent or longer runs?

jmcacdon - Women's cardio health really needs more research done, doesn't it?  Everytime I think of cardiac arrest or people at risk for heart disease I think of men or the elderly.  But heart disease is the #1 killer of women, too.  I hope someone figures this hormone/heart stuff out and fast.

andie - Oh, you had EP studies and heart cath - I'm sure that was plenty!  I'm not even sure they are planning on doing any sort of heart cath for me.  So far all I've heard is chest xray, MRI, bloodwork, and EKG.  After that I talk to the doctor and see what's next based on what that reveals.  Of course, the MRI has to wait because of the possibilty of pregnancy, but we are still going to move forward based on the other results.  Mayo is cool in that they do all the tests, then review them immediately and you talk to the doctors the same day.  I start at 7:15 tomorrow, have testing for a few hours and see the doctor to review everything at 10:00 am!   Hope it's all good news (as good as it can be).

Getting some skips this morning.  Might be anxiety induced.  Kinda stressing about tomorrow.  We are driving down tonight and staying overnight.

[andie5]

I didn't have an MRI or stress test done...I guess they felt those weren't needed after the heart cath, echo and EP study. In the EP study, they couldn't induce VT, but had some findings that made them think it was SVT (Supraventricular Tachycardia) instead or from the atria...but the wide complex tachycardia on my event monitor was ambiguous and I guess they always just assume it is VT. I have sometimes wondered if I should have a stress test?

[jmcacdon]

Good lord, I can't believe a doctor would tell you those things and then let you go home!  I went through menopause a couple of years ago and have had PVC's ever since.  I am convinced it is hormone related as I never had them before.  My gyno who is a woman told me about 90% of women have some type of palpitations during peri-menopause and menopause so to me that means they can be hormone related...don't let any male doc tell you different!

[jkfrench]

Thanks for the information on the doctor over at Grossmont.  I'll look her up.  I had a successful pregnancy and I did not take anything.  My heart rate was fast especially after eating during the last few months but like I said, I wore a moniter and did a stress test and everything was fine except for pvc's and tachy heart.  They didn't feel the need to put me on anything.  Please get back to us after your appt. on Friday.
Frenchie

[nervouslady]

Tickertock - for sure he seemed like an alarmist.  Though I think his approach was to treat me like I had serious heart disease until they find out otherwise - hence the don't exercise/you might drop dead junk he was spewing at me.  Then, if and when they see my heart is okay, he'd take it all back and say 'never mind!'  I don't think that's the best approach, however.  Especially if you are going to make your patients wait at home for a week to do more testing!

Christine -  I had really rapid heart rate for a long time after surgery which finally got down to about 80 but it took a couple of YEARS for that to happen.  For a long time it was consistently over 100, and PVCing all over the place.  I told my cardiothoracic surgeon about it and he said, 'That shouldn't happen'  Well, dude, it might not be the norm, but here it is...you know?  Some people.
I have to say that the doctor you see makes all the difference.  My surgeon had no empathy at all.  I called him once to tell him I kept passing out after surgery and he told me 'you aren't drinking enough fluids'...so I lay in bed drinking cranberry juice, crying.  2 hours later I was blue as can be and being rushed into ER with a paracardial effusion so bad that I almost died.   I think if your doctor isn't taking you seriously you need to find one that does.  It's worth the hassle. I mean, these are our hearts, for goodness sake!  And our lives!

I'd outright demand that they look into it.  I'm kind of a quiet, polite person and I've been dealing with these stupid arrhythmias and getting the run around about them for 4 years now.  I finally found someone who took my complaints seriously, and here I've got bouts of VT.  I wish I had been pushier in the past.  So my advice to you is to start getting pushy, LOL!  Seriously!

And, yeah, I know what you mean about feeling ill at ease about the surgery and them messing stuff up.  I read (don't ever do this) my records from the heart surgery.  There was something in there about a 'dubious' stitch.  UGH - what?  Seems kind of funny, I went in for a stroke, and since then have not been worried too much about suffering further strokes but am always worried about my heart!  And when I went in my heart was very healthy.  Go figure.

[Christine0687]

I feel the same way that the doctor went in a messed something up in there and now there is something out of the ordinary going on in my heart. I think I need to get an echo to ease my mind...Think he'll order one for me? He probably thinks I am crazy by now with all of the questions I have when I see him.

[tickertock]

Sounds as though this EP doc you saw is what is known as an alarmist, it is good to get a second opinion though, I'm sure you will be much relieved with the results and prognosis. Good luck & keep up updated.

[nervouslady]

Thanks everyone for your reassuring words.  It really helps me.  

Frenchie - I used to live in San Diego just a couple of years ago and had a great doctor at Grossmont Hospital in La Mesa.  Her name is Mary Alexander.  She does internal medicine stuff, but she could refer you to a good cardiologist, I'm sure.  She answers all of my questions patiently and is quite thorough.  And believe me, I always have a lot of questions, LOL.   I'm so glad you had  a successful pregnancy with NSVT and PVCs.  Did they have you on any meds for it during pregnancy?  Or do take any sort of preventative measures while you were pregnant?

Andie - Thanks, that is very reassuring.  So did you ever get a cardiac MRI?  Or did they just skip it when they saw the normal echo and stress test?  I might be pregnant (too early to test yet) and Mayo docs don't want to perform an MRI until they know I'm not pregnant.  I'm wondering what they will do if it turns out I am pregnant - they won't know what's going on on the inside of my heart..?

Liz - Sorry to hear you have the same as me.  It stinks.  I know what you mean about some people not being the best support - my husband is wonderful (though may be more scared about all of this than I am, LOL) but some other fam members are dumb about it.  I got a letter from my brother about how 'life is not fair but that's how it is'...gee, thanks for the heartwarming message, bro.  LOL!

I got a bad feeling from this guy I saw, and there might have been some miscommunication because he didn't speak English well and I missed a lot of what he was telling me.  He did for sure say no exercise, except walking in a pool or light walking...but I just played Wii Fit for two hours, so I'm not really taking his advice either, LOL.  I just got it and couldn't let it sit in the box!  I had to try it out!

Hope my MRI comes out okay.  I am worried that they flubbed up my previous surgery and that they'll find something weird in there.  The last thing I need is another heart surgery.  UGH, my body wasn't happy with that kind of invasive stuff and it caused all sorts of issues for me afterward.  As long as it's not that, I'll find a way, I suppose, to manage.

[Liz4914]

I have exactly the same as you -- I was diagnosed with NSVT in October of 2008 -- I live in Canada and am waiting until February to see an EP with a view to getting a cardiac MRI (and hopefully some suggestions as to treatment such as ablation).  I have a normal echocardiogram.  My cardiologist says the only way they can truly determine your heart is structurally normal is with an MRI.  I have been very scared, so I totally understand what you are going through.  I have also felt without any support or reassurance (except for the people on this website).  I am quite shocked by the fact he told you not to exercise and I wonder what Brooke has to stay about that - heck, I've been out skiing today - is this not OK??  I never thought to ask my doctor about that he did not tell me not to exercise.  I also go to the gym.  Please let up know how you make out at the Mayo Clinic - do wish I could go there as well and you are very lucky to get in so quickly.  Take care.
Liz

[andie5]

I too had a run of NSVT (which felt like a thud to me-so I can't tell the difference between those and PVC's), however, after an echo, heart cath & EP study, my EP told me not to worry and I am not on medicine or anything. A different EP doc I saw told me that a person with NSVT in a structurally normal heart had the same chances of sudden death as someone who never had NSVT.....so that was reassuring to me. I would wait and see what the Mayo Clinic doctor says--I know they are supposed to be some of the best in the US. I hope everything goes well for you and am interested to know what they tell you.

[jkfrench]

I had nsvt, PAT and pvc's during my pregnancy.  I wore a holter and had a stress test during my pregnancy as well.  It was not a problem according to my doctors.  It is worse during pregnancy... well it was for me.  Again, hormones and the heart have to be linked somehow.  Don't worry.  You are going to be fine.  I cannot wait to hear what the doctors at Mayo had to say.

By the way, if anyone knows of a good female cardiologist here in San Diego, please e-mail me and let me know.  My cardio is great but I think I'm going to need a more compasionate doctor over the next few years if I'm going crazy with these skips!

Also, I need to start taking vitamins.  Any suggestions?  
Frenchie

[nervouslady]

Frenchie and Brooke,
Thanks for your reassurance.  I feel much better.  My husband actually got kinda p.oed at the U of MN EP for throwing out all of this scary info.  Particularly because the first two docs (my regular cardiologist and this EP's resident) were really reassuring.  And also because I was already scared.

Frenchie - I think mine have something to do w/hormone imbalances too. I kept telling peeps my hormones were out of whack and no one believed me until I started spotting mid-cycle (sorry if that's gross) - obviously an indication that something was off.  I had miscarried, but it was several months prior to this happening.   What's cool about Mayo is that they actually have a division of cardiology just for female patients!  So that is where I'll initially be seen on Friday - Women's Cardiology Clinic.  Maybe they will be more familiar with hormone related heart issues than the regular docs around here.  

I'll keep you updated for sure.  Out of curiousity, has anyone sustained a pregnancy full term w/NSVT?  Did the NSVT get worse or cause significant problems, or was it just an irritant?

[jkfrench]

My doctor just assumed that is what it was by the way I described it to him.  He was NOT concerned in the least.  I get them mabye three or four times a year.  Usually when I am lying on my back and taking a deep breath.  I can actually make it happen again if it happens once by just taking a deep breath.  The longest I have had it for is about 8 or 10 beats.  Usually it is around 4 beats.
Thanks Brooke as always for your reassuring words.  My skips are still annoying me but they are dying down a bit (my period is over)  well what I had of one.  (sorry guys).  I just am having to many other signs that my hormones are out of whack and will be for a few more years.  That is why I attribute these nasty skips to low estrogen.  So far, I have just felt one today and I just ate a handful of m&m's so we'll see.
xo
Frenchie

[Brooke_38]

Hello...

You are doing the right thing by seeking a 2nd opinion! An AICD for NSVT in a heart that is free of disease is unheard of.

I don't know of any insurance company that would even pay for for the device unless medications fail to treat and further ablation therapy has failed...Still, I would be shocked to hear of an AICD being impalnted for NSVT.

As far as what you are reading on the internet, any articles you read will always state worst case senarios. Keep in mind that those occur on such a rare basis, I'm not even sure there are statistics on it.

You're right, you are still alive and that should ease your mind a little bit. I have lived through VT, had an ablation for it...no implanted device for me:) I can chalk that off my list of things that need to be fixed.

Wait to see what you hear from the EP on Friday. I'm pretty sure that the news will be better than what you were told:) Please let us know how it goes!

[nervouslady]

Yeah, my doctor told me this.  He is an electrophysiologist at the University of Minnesota Hospital in Minneapolis.  He basically said that it it not common for someone to experience v-tach (sustained OR nonsustained) without some underlying heart condition behind it.  He said that even certain medications, caffiene, stress, etc can help to egg one on but that they alone cannot cause NSVT or VT.  And he told me all of this regardless of the fact that my echo looked great.  He said I'll need a cardiac MRI and a stress test and once those results are in we'd go from there.  He said the best treatment for what I have is a defibrillator!  I was shocked to hear this.  He didn't think he'd be able to ablate it because they are so short lived he'd have a hard time finding the problem and knowing where to ablate.  He said medication for someone my age is a bad idea because of side effects and that I'd have to be on them for life.

Then he went on to tell me no exercise...I asked if I could swim and he said I could walk in the pool, but no swimming.  Dude, I'm 34 and am very active w/no probs.  To hear all of this was heartbreaking.

This is what Mayo's website has on NSVT:
Most VT occurs in people with some form of heart-related problem, such as scars or damage within the ventricle muscle from coronary artery disease or a heart attack. Sometimes, ventricular tachycardia last for 30 seconds or less (unsustained) and are usually harmless, although they cause inefficient heartbeats. Still, an unsustained VT may be a predictor for more-serious ventricular arrhythmias, such as longer lasting (sustained) VT.

Not as bad as what the U of MN doc said, but the latter part of the last sentence kind of freaks me out.
I hope I'm not scaring anyone, I really don't want to spread my anxiety around, I'm just telling you what I heard and that I'm really worried :-(  I will try to relax.  After all, I've had these for 4 years now and am still here.

[Brooke_38]

Hello...

Nervouslady:

NSVT that occurs in a heart that is structurally sound is NOT life threatening. The chances of it deteriorating into a sustained VT are very rare. I am not sure where you obtained your info that NSVT is life threatening. Did your Dr tell you this? or is your information from sources other than your Dr?

I think that you are rightfully concerned about your diagnosis, but let me assure you, it isn't going to kill you. Try to relax a bit. Good luck at your appt and let us know how it goes:)

Frenchie: I hope that you feel less confused now:)

[nervouslady]

Thanks for your comment.  I hope I didn't scare you.
Maybe it was this  EP guy that I saw.  He was sooo scary - talking about dropping dead and defibrillators, etc.  I told him I might be pregnant and he suggested aborting the baby!  So I left in tears and have been scared ever since.  All the info they have so far are two short runs of NSVT and a completely normal echo.  He even said that normal cardiac output is 60% and mine was even better at 65%.  But still went on about dropping dead spontaneously.

How did your doc determine you were experiencing NSVT without seeing them on an ECG reading?  How long have you had them now?  My runs are usually from 2 - 8 or so, but I had a doozy awhile back when I was pregnant that lasted about 20 seconds or so.  I will let you know what Mayo says.  Hopefully I don't get a scary doc again...:-(  I hope you are right in that they are not a big deal if the heart is healthy.  

[jkfrench]

Hi
Now I am confused because I thought NSVT was not life threatening if you heart is structurally normal.  I get small runs of them  (like 10 fast beats in a row).  Never more than 10 or so.  It hasn't been caught on tape because it only happens a few times a year but my doctor said not to worry about it.  I am just assuming that is what it is.  
I'm sure the hard thud was a pvc.  I've been feeling those hard thuds for months now.  I'm attributing it to pre menapause.  I have other symptoms as well so hormones is what I'm dealing with right now.
Good luck to you and please let me know what the doctor at Mayo says.

Frenchie