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Avatar universal

hcm and pvc

my 26 year old son has hcm and has been on verapermil for a year now. i don't know the dose but its low. the hcm was found due to the pvcs he was having which the dr said aren't dangerous and the medicine pretty much made them go away. he's had several promotions at work and for a couple of weeks a quarter he is under some heavy stress. he is starting to get several pvcs daily during this time. he's not concerned i am what is your opinion of this. are they as harmless as he was told or did we misunderstand. are they also common with lots of stress.
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Avatar universal
You must remeber my postings on mvp! Or did i post on mvp?
Cant remeber! But yes i have mvp with little leakage and with mild thickening! EF 73%! I cant belive you can remeber all of that. So yes you think mvp can cause v-tach right, but nothing to worry about? Right! Thanks Its just crazy no matter how many times doctors or anyone else reassures a person for some reason we just dont belive them or cant get on with it! I guess we are all afraid of it happening again and not stoping. I know i am because everything i have read in the net or medical books says that v-tach is associated with a sick heart  or something to that regards. Mine is idiopathic no known cause and i just dont understand it. I want my life back! Its really hard to keep my composure when i have episode while carrying a  normal conversation. any way thanks hank
I do feel much better when im on this web site and reading everything
wmac
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Avatar universal
I have not posted here in a long time, either in comments or actually getting through to post a question (even finding myself able to many times, but figured I would allow someone who feels now, like I felt 3 years ago when I found this forum to have a question answered).
I was a cardiac cripple worrying about every beat. Had every test, holters, event monitors and take meds as everyone on this forum has. I wondered daily if today was the day the abnormal rhytmns were finally going to kill me. After finding this forum I came to this site everyday for a long time. Now I log on only once or twice a month. I read this post and noticed you said you would not post again. There are only a few names I recognize over the years and have found your comments to be very helpful.  You have posted many times you are not a doctor, but your insight and caring nature has put many at ease. So, please continue to post, and to everyone take care of yourselves, ask questions, empower yourself with knowledge and feel better soon(much easier said than done) Enjoy the view Hank...I love the R & R of the water too!
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Avatar universal
You must remeber my postings on mvp! Or did i post on mvp?
Cant remeber! But yes i have mvp with little leakage and with mild thickening! EF 73%! I cant belive you can remeber all of that. So yes you think mvp can cause v-tach right, but nothing to worry about? Right! Thanks Its just crazy no matter how many times doctors or anyone else reassures a person for some reason we just dont belive them or cant get on with it! I guess we are all afraid of it happening again and not stoping. I know i am because everything i have read in the net or medical books says that v-tach is associated with a sick heart  or something to that regards. Mine is idiopathic no known cause and i just dont understand it. I want my life back! Its really hard to keep my composure when i have episode while carrying a  normal conversation. any way thanks hank
I do feel much better when im on this web site and reading everything
wmac
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Avatar universal
Trust me I have enough anxiety over this medical problem-checking pulse constantly, searching medical books, etc...If I have to ignore your posts then I guess that's what I'll start doing-It seems yours are in conflict with the good doctors here on this site (as well as those around the world that people have shared their stories about)...I hope you find peace and hope. Jen
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Avatar universal
I can totally relate to you wondering if you can tell the differance between them or not. I kept having episodes of many of somethings so i got a monitor to make sure i was not having runs of v-tach. So i had the monitor on and had an episode so i recorded and thought yes i caught it, it felt like many irregular beats in a row with no normal beats in between. So i sent it in and they called back and said i was having ocassional pacs. I thought what in the world im going crazy! So must of had a pac and normal beat and pac and normal beat and so forth but i never felt the normal beat. Then three days later i had another and it felt like it was going to a single pvc real thumpy and recorded it and lord and behold it was aivr accelerated idioventricular rhythm. cray but im not sure how to tell the differance either but its all scary.
Wmac
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Avatar universal
I can totally relate to you wondering if you can tell the differance between them or not. I kept having episodes of many of somethings so i got a monitor to make sure i was not having runs of v-tach. So i had the monitor on and had an episode so i recorded and thought yes i caught it, it felt like many irregular beats in a row with no normal beats in between. So i sent it in and they called back and said i was having ocassional pacs. I thought what in the world im going crazy! So must of had a pac and normal beat and pac and normal beat and so forth but i never felt the normal beat. Then three days later i had another and it felt like it was going to a single pvc real thumpy and recorded it and lord and behold it was aivr accelerated idioventricular rhythm. cray but im not sure how to tell the differance either but its all scary.
Wmac
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Avatar universal
Are you on any meds for your nsvt? Do you think mvp could cause v-tach? Let me know on your thoughts on this please.
Wmac
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Avatar universal
Hi everyone!

Hank, please continue to post...You help me tremendously and it would be a loss if you were no longer on here....Fred, I know that you are in pain and I know that you want straightforward answers, but I must tell you that you are bringing anxiety to many folks on here with your comments and negative opinions.  After reading your posts last night I went into a major panic attack and was up with frequent pvcs for much of the night... Anxiety seems to be a big trigger of these horrible pvcs so I wish that you would refrain from negative opinions that conflict with what MANY top notch cardio doctors are telling us....

Question for anyone who may know....can you FEEL the difference between pvc episodes like trigemy and NSVT?  or can you only distinguish between them by a holter?  I've had moments from time to time where there are multiple things happening in a row and I'm wondering if it's pvc trigemy, etc that a holter did pick up at one time....How would I know if it was NSVT?  What does that feel like?  Should I be getting repeated holters and echos on a regular basis?  I'm 32 and last echo showed structurally normal heart, and holter showed normal sinus rythym with moderate pvc's (4000 in a 24hour period)...Thanks! Jen
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Avatar universal
Hi guys, and thanks so much for your help!!  I called and got an appointment today with the nurse practitioner just to get an EKG done and see what's up.  At least this should be better than sitting in the ER for hours!  I was surprised they were able to get me in, but it is with the nurse practitioner and not my actual doctor, but I think she's supposed to be good.  I went to a nurse practitioner in Reno, and he was great, his bedside manner was the best, he just would listen, and always be very reassuring.  Of course, now that I'm on my way to the appointment, my PVC's have settled down a bit, since I took the last two hours to sit in my large bean bag chair, and watch tv.  I know that sounds unhealthy, but it helps me to just sit and relax, and try to kind of not think about things like my Dad.  Anyway, as usual, you guys have really helped me, and I really appreciate you all taking the time to come on here and answer me.  I don't know what I would do without this place!!  Thanks again, Val
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Avatar universal
Hi Hank..
I read your postings all the time and you have no idea how much you have helped me many many times and put me as ease with these darn things when I thought I would lose my mind.  Please please don't quit posting and continue to offer your very helpful knowledge.
Carrie
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Avatar universal
hi val i'm the 1 that asked the question to begin with. i don't know anything about anything except i had a heart attack myself and dr things i carry the gene that gave my son the hcm. anyway i just want to say to you if you feel like you should goto the er then go. let them tell you it's nothing no matter how many times it happens. i've had shortness of breath many times since my bypass and they always tell me its just my nerves but it was smart i came, good luck

almost
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Avatar universal
Okay now that we are past this sillyness, I have some questions for you. First off tell me about you nsvt. Because i too have it and it is scary, also what do you know about aivr, accelerated idioventricular rhythm, i also have that. So have you had any more runs of your nsvt? Anyway tell me what you can on this. Thanks
wmac
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Avatar universal
Well I certianly am not going to argue with you over something so silly, but if you would have read some of the post before your post I just simply asked a question to someone asking if they had nsvt? Just a simple question and you come back saying what you did and I think most of us were past the main question and on to our own little ordeals, like myself. I really dont think you should be so upset. I have read many post from you over this forum and other forums, you are definantly entitled to your opinions as well as the rest of us. I just dont think that was a fair statement coming from you and saying that our  worry is unnessasry. Thats a very harsh thing to say when we are all worried thats why were here, is to help each other and comfort each other no matter what, and yes everyone in this forum including myself are worrriers if we werent worried we wouldnt be here. But when we here from family and friends not worry and they dont know how we feel we turn to this forum, its like all the other support groups.So im very sorry that you feel the way you do and I dont think you should quit posting either you have been a huge help to people and im sure it helps you as well, Im just confused, are you a doctor or pharmacist it seems to me i read that you were a doctor on some other forum???
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Avatar universal
Hi, and thanks for all the help on here!!  I am sitting here comtemplating going to the ER, so you must be wondering why I'm on here, but it usually makes me feel better to come on here, and think more about it before I do it.  I certainly don't want to live my life in the ER, and they usually can't do anything for you in there anyway.  It's just that the cardiologits here where I am have such a long wait for appointments.  I have an echo on the 14th of this month I think it is, but I don't see him to discuss it till January.  The thing is, I have PVC's each and every day, probably in the thousands, but today I'm having an especially bad day, which happens sometimes.  They are just very frequent, and strong, really getting my attention.  I don't really have any other symptoms with it, except for a breathless feeling, which comes with the anxiey about the PVC's, like I'm always trying to take a good, deep breath.  I don't know whether I should go to the ER or not.  I feel like it might be good to catch them when they're so bad like this, but then it makes me nervous to go and do that when I have two kids in school, and a husband who's away at work in another state today.  If I just sit down and relax, they will hopefully calm down to a few a minute, and I can live with that.  The thing I get worked up about is this sudden death thing, and I was trying to make sense of the above posts, but I think I'm even more confused.  Sudden death is more common in those with PVC's like I'm having them, right?  My Dad did have sudden death, but he had restrictive cardiomyopathy, and supposedely sudden death is classic for that.  I have had numerous tests, but I am due for another echo.  Anyway, it just makes me feel better to know that some of you have them as much as I do, in the thousands per day, and your doctors don't seem overly concerned.  It's not that my cardiologist seems concerned really, just baffled.  He can't figure out why I would be having these like this.  I have said before, so sorry to repeat myself, but the one thing I can link them to is hormones, since I am still going through menopause, even though I started going through it very early.  I am 44, and this started over ten years ago.  I guess also the thought of going into the ER just comes from some days when you feel like you are just so sick of it, and you can't handle it anymore.  I feel stronger on some days, as far as being able to deal with it.  I think I get overwhelmed with the thought of what my Dad had, and worried that I could have that, and then when I think of my Dad, there's tons of grief still there about missing him also and all of that, so it probably goes hand in hand.  OK, so now I'm babbling on, anyway, thanks again for the advice!!  Val
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Avatar universal
Hi Sylvia........
How long was your NSVT that you had recorded on your event monitor? I also what they thought was like a 6-7 beat run of that and it really scared me, but they don't seem concerned.  How frequent do you get the PVC's?
Carrie
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Avatar universal
Hi Carrie, my NSVT was a four beat run. I have had four holters, I had one four beat run show up, three pac's, one pvc. My doctor told me that I have much less than most people, it is just that I am very aware of what my heart is doing so that I feel every single one! Hi hankstar, I agree with you. I think that the doctor was referring to people diagnosed with HCM, but I do try to stay informed!.....Sylvia.
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Avatar universal
Hi, Yes I have had NSVT show up on a holter. I was very upset with this, but my doctors were not concerned. I try to trust them! They are some of the very best out here in the San Francisco Bay area. I have been to UCSF and Stanford to see the top cardio, and they all told me the same thing, with a normal healthy heart, it is harmless! It is just such a horrible feeling when it happens, that it is so hard to believe that it is harmless. My doctor told me that he would never let me walk out of his office without treatment if he thought that this would hurt me, so I just try to trust his knowlege! I wish the doctors here could comment a little more on this subject, as there seems to be a lot of fear. Thank you.....Sylvia
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Avatar universal
Thanks for your reply, i do appericate it  and to carebare, that was my next question. If either of you would like to talk about your nsvt email at ***@**** im very interested about your stories.
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lak
I have been reading the forum because I have had pvcs for the last year and everything else seems normal.  The only test that my doctor wanted me to do was an mri for heart and I couldn't do it.  I go no longer that 30 seconds without one but no significant runs.  I got frustrated with my doctor because I am on a beta blocker but I wanted something for night to help calm them.  I am now wearing a 30 day event monitor but most of the time I cannot feel them so, I don't know how this will track them. I to am concerned about the frequency of them and how I feel. I get tired to easily, and have alot of trouble sleeping.  Does anyone know if these symptoms are caused by pvcs

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Avatar universal
Carrie:

Yes, my cardiologist was (is) somewhat concerned about the number of PVC's that were recorded.  I was on Toprol (spelling?) for a while to keep them under control but I noticed little difference in symptoms and there were a few side effects.  I dislike taking any kind of medicine and since there was no real improvement it was decided that I be taken off the medicine and was prescribed another medicine to take "as needed".  In almost one year I have yet to take any of that medicine, even when I do experience PVC's.  The PVC's just didn't seem bad enough to warrant medicine.

I too was shocked at the number of PVC's recorded.  My cardiologist and my family doctor both seemed surprised at the number.  I got the impression that it was quite unusual.  I do recall that when I wore the monitor it happened to be in the middle of a time (within a couple week period) when my symptoms were at their worst.  They were never that bad prior to that time nor have they been that bad since.  I guessed I was having between 1,000 and 2,000 PVC's while I was wearing the monitor.  Those I felt.  I didn't feel over 22,000.  Most must have been very slight.

If I've ever felt light headed at all when having PVC's it was at the time I was having so many of them.  And I don't think the PVC's made me light headed.  I think it was nervousness.  At the time I didn't know what was happening and when many PVC's were chained together it felt as if my heart wasn't working properly (which it wasn't).  That scared me.  But I never really got to the point of felling like I was going to pass out or anything.

Because I'm not too old (45), and because my nuclear stress test, echo cardiogram, and other tests showed a normal, properly functioning, strong heart, my cardiologist is optimistic.  He says PVC's are normally not anything to worry about in someone like myself.  That having been said, my cardiologist is, of course, still somewhat concerned.  We have to keep an eye on things and check things out if symptoms worsen.  I've seen him three times over the past year and after this last checkup he says I don't have to check back for (at most) a year.

I'm continuing to ignore PVC's when they occur (which isn't too often anymore).  They never really "hurt" and if I don't get upset when I feel them they pass without disrupting my life at all.  Easy to say, not always easy to do.
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Avatar universal
Do you also have non-sustained v-tach? I Do and it is very scary!
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No thats not we are talking about! Myself and a few other people do have nsvt and yes we are rigthfully concerned, its our heart and we only have one. I do relize  and I do belive that everyone does too, that they were refering to the hcm! Im very interested in talking to other people with nsvt, its a very frighting thing to have. No matter how reassuring you or the doctors are its still scary and very real! So no I dont feel as though it has gotten out of hand, isnt that what this forum is for? To help each other!
Wmac
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Avatar universal
I also have thousands of PVC's per day, and have had them for over ten years.  There have been times in that period that they would decrease, but only to come back with a vengence.  I thought I was rid of them for one whole year almost, and had gone through menopause, so I connected them together.  Anyway, they started coming again slowly, just a few a day, and gradually increased to the amount I'm getting now.  I definitely get them more if I'm more anxious, but I find that if I just try to ignore them, it really helps.  I get them so bad for example if I'm just walking through the store, and I think nobody around me could possibly be getting anything like this.  It also helps to drink alot of water, and exercise.  Anyway, good luck!  Val
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Avatar universal
Hi Mark,
When I read that you have over 22,000 PVC's in a 24 hour period, I was wondering if your cardiologist seemed concerned at all about this or still told you not to worry about them?  Do they ever make you lightheaded having them that frequently?
Thanks alot,

Carrie
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