pvc's

I have had pvc's for the past 30 years and have had nuclear stress tests, event recorder, holter monitors, and they still scare me.  My doctor said he would be willing to try flecainide but its risky.  You would think i would just be able to not let them bother me but they scare me now as much as they ever have.  Has anyone heard of this med

[tsco]

I take flecanide now,  75 mg 2x day.  It is excellent at reducing PVC's and PAC's for me.
I have a side effect because of another weird rythm but other than that I have had no side effects.  I was ready to quit until I started this med.  Because of my other problem I now may have to quit the Flec which I am dreading.

[Jan1130]

Hi... I actually just started on flecainide about a week and a half ago following an ablation.  I have had a few issues with it - one being that it interacts with my cardizem and causes pauses (for me)... and when I've read about it, it seems like not such a great drug - or a great drug vs. a scary drug.  I'm going to the doctor tomorrow to talk about side effects and whether or not it is really the drug for me.  What does your doc tell you the risks are of taking the drug?  Have you tried other drugs?  And, can they tell you anymore about why they think you are triggering the pvcs?  

[nursechrista]

The doctor says there are risks to taking this med like the heart stopping, they would put me in the hospital for 4 days to make sure its ok before i would go home.  My doctor says why risk taking this med when the pvc's will not kill ya.  From what im reading here i dont have near as many as some people have.  They have no idea what triggers them, but i do have anxiety issues but the anxiety is usually from worrying about these skips. I have had numerous haltor and event recorders done and just a couple of months ago had the nuclear stress test.  I take atenolol which keeps my heart from racing and its been great for that.  What i have read about this med it can cause fatigue which i have anyway so that wouldnt be good

[Artaud]

Hi,

It's truly unfortunate that we can feel the PVCs. My wife works for the Cardiologist that I see, and she says that they see patients with so many PVCs that she can't even take their pulse. These people are sent by their Family Doctor or a Doctor overseeing a Pre-Employment Physical, that discovers the arrhythmia during an otherwise routine physical. Odd thing is that these patients frequently are not aware that they have the arrhythmia, they can't feel it. After doing the examination, if all is well, the Doctor will often not tell the patient that they have the arrhythmia, he is afraid that they will obsess about it. There is no reason to tell them, they have no symptoms and their heart is healthy.

The only difference between them and us is that they can't feel them. They may be getting many more than you, but they are oblivious to them. You, me, and they, presumably, are not at danger from the PVCs that we get, even though we hate them or are seriously distracted by them. I just got over my last episode of PVCs, more than 600 per day for the last year or so. That's uncomfortable, yet well under the level that some of the other forum members experience. It is my understanding that until they exceed 10% or so of the total number of beats per day, (easily more than 10,000), they are not going to be a problem for your heart. Wow, 10,000 and still not a problem.

How many PVCs are you getting per day?

Be well.

[nursechrista]

I think less then 100, tonight they are real bad again, i didnt have any yesterday.  I seem to panic when i get them, i am never sure if the pvc's are causing the feeling of panic or my worry causes it.

[Fran71]

Hey this was so reassuring! When I face a bad PVC episode I remind myself of this. PVCs, and even NSVT,  are so common...I think I'm in a safer position than many people out there who have them and don't feel them, so they aren't going to have the appropriate tests...unfortunately. My father is one of those people who doesn't feel them! He had a post heart attack holter and it showed over 1000 PVCs, and 6 couplets! But he has no idea what they feel like...
The symptoms are our misfortune...the good side of it is that we are being checked and monitored.
Thanks for reminding me again!

[Fran71]

My cardio told me that if my symptoms should get unbearable he would go for flecainide. He didn't seem too concerned about any side effects or risks. I asked him about ablation and he basically laughed at me! I think he would prefer the flecainide to ablation.

[Artaud]

Hi,

Just as drinking and driving don't mix, anxiety and PVCs are likewise. More than several times over the years, being plagued by PVCs to the point that I could not tolerate it, I would eventually go to the Emergency Room. There I would sit, believing myself to be safer there, lest something happen to my heart, since emergency services would be immediately available. Problem is that I would relax, and when I would relax, the PVCs would go away, and when the PVCs go away, and they finally take you back for an examination, they have no idea why you are there. Try calling a TV Repair person when your TV is working. There's nothing that they can do. I would get reassurance that nothing grossly evident was occurring on the EKG, and they would listen to my heart and lungs as well, and I would be sent off home yet again.

Also, at work, on occasion I need to attend very contentious meetings. I know beforehand that my heart will mercilessly generate PVCs, sometimes so bad that I have almost excused myself from the meeting and went to the plant medical facility. To reduce the likelihood of getting these PVCs, I began to take a very small dose of a tranquilizer before the meeting. Although it was not a cure all, it reduced the number of PVCs that I got from my apprehension at the meeting, in addition to making me a little less sensitive, emotionally, to the ones that I did get.

Be well.

[Artaud]

Hi,

Yes, it is difficult to imagine something that you can feel that seems so out of the ordinary as being harmless (for those of us that have been seen by Doctors and determined to have healthy hearts). Yet just being aware of our PVCs does not necessarily warrant a need for concern. Even years ago, during one of many episodes of PVCs and yet another visit to the Cardiologist, one Doctor commented: "I don't care how many PVCs that you get, can you walk up two flights of stairs without becoming excessively winded?", which I could. They appear to be looking at overall performance, like the Horse Power that a car generates, irrespective of the few backfires the car may experience. We, in turn, become obsessed by the backfires, and fail to appreciate the remaining performance.

The logic of it is one thing, putting it into practice during a bout with PVCs is another.

Best to you and yours.

[Sirenet]

Hello, I'm Steve. I found many of your comments quite interesting. I realize that this is a somewhat old post, but it interested me to the point that i wanted to comment. This is all new to me so I have been spending much time learning, since I have some decisions to make. Not quite sure where to start. PLease bear with me...
  It seems that I am one of the people you refer to, as to 'not being aware' of their arrythmias (pvc, svt, vtach, etc...) Well it is not so much that I was unaware (heck I have ALWAYS felt the weirdness going one), but I had been reassured by dr (including a cardiologist)  that" as long as they don't bother me, don't worry"....
  Well with this reassurance(presumably), I did just that. It has been compounded that I had been in a head-on MVA 9 yrs ago, wherein I suffered many serious injuries(most notably a broken neck). Many months of rehab, etc, and I found myself 'learning' not to complain about my numerous pains, etc. Many syptoms (symptoms) I was suffering quietly with, turned out to be heart related and not just from acc injuries.
  In any event, yrs later now, I find myself with serious issues. Went into hosp wih severe abdominal pain. Turned out to be choleccystisis (gall bladder), which need to be removed, however I was told that they would not give me cardiac clearance for surgery. After being TOTALLY shocked with this new info,  2wk later leaving the hosp trying to grasp the severity of my new reality. Need an ICD, like yesterday, lol. Turns out I have severe heart failure with EF around 15%. BNP of 1092. CHF, dilated cardiomyopathy, severely enlarged heart. MV regurg, tricusp V regurg, complex pvc, vtach, afib, heck, can go on ..... lol Suffice to say, many prob from undiag'd heart problems left unchecked. .. oh, the good news, is that I don't have CAD (clean arteries) But heck, if I had that, at least they'd have something to fix. (stents, etc)
  The strangest to me of all, is that due to my injuries, I have been going to drs' for yrs, every yr. Cardiologist did stress/holter, etc in 2004. How in the world is this possible.
  Very sorry about the tome here, but thought that my story would be a good example of some of your comments. From here on in, I would suggest  anyone with what they feel to be a reason for concern, see a dr, ask questions, and do not accept being trivialized!

    I wish you, and everyone well.....and thank you for your insight and compassion, which I see that you are generous with sharing on a regular basis...

[iamfaithful]

Hello-

I first would like to say that while your post is somewhat disturbing, you seem to be in very good spirits and I think that is so awesome!   I am truly impressed by that.  

I'm trying to make sure I understand your post.  You went to the doctor/cardio about your weird beats AFTER they were discovered on accident?  So when you went did they do any test besides the holter monitor?  Did you ever wear an event monitor (for 30 days), did they give you an echo, stress test, obviously they gave you an ekg right? I am asking this because if they would have given you an echo-at leat- they would have found the enlarged heart and ef, etc!!  I am just confused as to how nobody caught this!!!  Was it after your accident that you really started to have serious problems, suffice to say it was BECAUSE of your accident the heart problems began?  I'm just a little confused, please forgive me.  I wasn't sure if that is what you were saying.  I find it very difficult to understand how you could have so many heart issues (I hope I don't sound callous-don't mean to be ) and nobody caught that.  I mean, they should have caught something on ekg at LEAST!!!   What is your plan of action now and what excuses are they giving you?

You are in my prayers!  Be blessed and keep the faith.

[Fran71]

Sirenet, thank you for sharing. I'm so sorry about your problem. I too find it so strange that no doctor ever picked up any signs. With an EF of 15% you certainly must have complained to them about fatigue or similar issues at some point.

I hope you'll feel better now, with the appropriate treatment.

Take care

[Fran71]

Hi Artaud,
sorry, I see your reply to my post only now. You're right about focusing too much on the PVCs and not on our good shape. You mention that not becoming winded is a good sign. I rarely become winded, unless I run very fast. I was on the stair master once. The gym owner came up to me and read on the machine I had an HR of 190. He freaked out! He said the machine must be broken, because I would have collapsed with that HR. I laughed and told him that was normal. The funny thing was that I was chatting while I worked out, hence probably my superfast HR, but I wasn't winded!

So weird...

[mml78]

I took flecainide for a while for PAC's and atrial fibrillation.  It worked for a little while, but the side effects were bad.  I got these really bad anxiety attacks and I was very dizzy.  Then I went on disopyramide and I was on it for about nine years.  I think it's more dangerous than flecainide (it tends to lenthen q-t interval in more people than flecainide does), but it worked for me.  I did, however, finally have an ablation for the a-fib so I wouldn't have to be on the anti-arrhythmics anymore because it is really scary to be on them.  I was always worried about a cardiac arrest.  Now I just have to live with the PAC's but no a-fib so far.

My recommendtion is this - if you can handle the anxiety that comes with meds, go for it, but for me it became too overwhelming.  I would definitely not take it for PAC's or PVC's alone.  I think there should be some other more sustained arrhythmia at play before meds enter the picture.  I know PVC's/PAC's are horrible but it is better to have them and know your heart is normal than to have them and not know what effect they could have on a heart that is being affected by an anti-arrhythmic.  But it's your choice - it could really work for you and give you peace of mind.  Good luck!

[Sirenet]

Thank you so much for your care !  Honestly, I am trying to sort through it all myself, and I apologize if it sounds confusing ( understandable since I was trying to be brief and limit space).
  I believe that my initial injuries might have overshadowed what may have happened to my heart. A few months after acc, however, I was hospitalized with A-fib which was totally new to  me). 3 days in hosp for that - released on digoxin. Follow up with cardiolist (holter) Told that I have an irregular heart beat which was probably 'normal for me.
   I have always had an abnormal EKG. in 2004 I had stress test and holter again and my CARDIOLIST told me;" you have an irregular heart beat, and a chamber in your heart which pumps inefficiently"  But assures me, that if it doesn't bother me, not to worry about it.
  Well, after all my recent news I have begun collecting info. I had no idea what these numbers meant back then, but just learned that my stress test in 2004, put my EF at 35% and showed a dilated left ventricle !!! Now, all this and an irregular EKG and no follow up or further tests?  !!  Again he told me not to worry about it. It is too late now to go back, but I just cannot believe that. I feel that I have lost 4 valuable yrs to try and address heart problems that were going on.
  I have always blamed symptoms from acc injuries. For instance, my feeling of passing out, I always attributed to my severe neck pain. Getting tired easily was because I no longer exercise like I used to, pre acc, etc.
  I know my post prob'ly appeared strange, but I hope this helps clarify.  I see dr's often and have been asked about my irregular heartbeat, and when I say that my cardiolist told me not to worry about it, they are like: "ok".  Which is why I have begun to try and learn so I have somewhat intelligent questions. Unfortunately, much damage is done, I fear, as I prepare to have ICD put in place. Just wondering though, if I should get the extended warrantee ( going to be needed?) lol
  Thank you for your care/support. Be well.

[nursechrista]

I dont have anything going on except the pvcs and pat but since i am so worried about them they will try the flecainide.  Now i am wondering if its worth it to even do that

[iamfaithful]

Okay, I see.  Do you now have a new cardioloist?  I totally agree that more should have been done, I am really amazed at your cardio.  Did he/she at least have you on any type of medication?  Well, I realize that was then and this is now, I am just so sorry that your doctor was not more "attentive" to say the least.

No honestly, your post wasn't that confusing, I was just trying to make sure I totally understood what you were saying is all.  I tend to become confused quite easily-my husband always teases me about that :-)

Okay, so now you are going to get and ICD?  And when are they planning to do that?  What about your gallbladder, what do they plan to do about that?  I too have gallbladder issue and need to have it removed, but don't have the courage just yet for surgery.

I will keep you in my prayers, and you keep your head up!

[iamfaithful]

Hello,

I was just wondernig if you all tried any other type of med before considering flecanide?  Like beta blockers or possibly an anxiety med?  If you mentioned that above forgive me I didn't see it.  I am wondering because my cardio showed me an ekg of one of his patients that he WOULD prescribe flecanide for and I could tell a DISTINCT difference in his rhythym from mine...there weren't really any "peaks"-almost looked like it could have been a straight line.  And he also told me that although he would prescribe it, there were a lot of side effects to the drug.

I know experiencing PVC's are bad as I have them, but do you have that many a day where you want to get on a drug like flecanide?  I am on a beta blocker and it has helped me out a lot.  There are days when I wish I was off of the meds just because I don't like taking them, but I know that it has helped my sensation of the PVC's.

I really hope you find something that works for you as these things can be very debilatating and ruin the quality of your life.

[klanac]

I was just reading in a book to use taurine to calm your nerves. This amino acid can help stop your nerves from overstimulating your heart, which is a must in controlling benign arrhythmia, says GlennS. Rothfeld, M.D. regional medical director of American WholeHealth in Arlington, Mass. He recommends 500 to 1,000mg twice a day between meals.   I was taking tenormin, a beta blocker, and about a half-hour later I would get bad palpitations and I could barely breathe. I kept taking it and finally my legs started to swell and I could barely walk a block without getting so many palpitations and feeling faint. I slowly stopped it on my own and no longer take it. I couldn't even go up and down my stairs as I would be breathless. Now I am feeling good and take the taurine, try to meditate, drink the oatstraw tea which is suppose to quell palps as it is calming. Some alternative practioners believe that the source of most or everyday benign arrhythmias isn't your heart but it's your addrenal glands. When you're feeling stressed, kthese glands pump out hormones that can irritate and overstimulate your heart so that it races, flutters or skips a beat. But you can calm your adrenal glands and help prevent benign arrhythmias with qigong,a jt ype of Chinese medicine that shows you how to send healing energy(chi)to any part of your body. To bring chi to your adrenal glands make fists with both hands and bend your arms behind  you. Pt the flat of one fist(the back of the hand)on each adrenal gland. You'll find one on each side of your back near your kidneys, just above your waist and below your ribs. Slowly land gently rub your hands up and down feeling them warm that area of your back. Do this everyday for 2-3 mins. says Dr. Rothfeld. Just some ideas if you want to try.

[mml78]

I don't mean to discourage you; it's just that anti-arrhythmics are serious stuff.  But, you can always go off of it if you don't feel well, so if the PVC's are driving you nuts, maybe it's worth a shot.  One other thing I forgot to mention is that when I was on flecainide, I actually did get a couple of PVC's, which is very unusual for me since I had never had any documented PVC's before that.  I always just get PAC's.  So, in some people it might generate PVC's, who knows?  I totally sympathize with you, though, that palpitations can totally degrade one's quality of life, and I understand the urge to go on a medication that might truly stop them.  Let me know what you decide and how well you tolerate the flecainide if you decide to go on it.  

Oh, yeah, and another thing I should mention - my older sister who is 31 takes flecainide for atrial flutter and she has tolerated it just fine.  I think my strong reaction to it was unusual, as well as my positive reaction to disopyramide.  My sister says flecainide controls her arrhythmia really well.  Good luck!

[Sirenet]

hello and thanks again for your care/support. Yes, when I was released from hospital I was given follow-up with new cardiologist and have ABSOLUTELY no plans of going back to my old one. My med regimen is; Coreg (Beta-blocker. Disheartened by eventual side affects), accupril (ace inhibitor), spironolactone (diuretic), and simvastin ( for cholesterol- even though mine has always been fine in the 170 range).
  I am told I need the ICD imediately, so... ( evidently with all I have gong on, at risk of V-fib). They are limiting all my activities until I get one. Saw EP last week, wants to do EPS. Waiting on blood work results.
  Oh, as for gall bladder. After about 7-8 days in hosp (my stay was about 2 wks), after doing tests and starting me on meds, I did get the cardiac clearance for surgery. Had the lap cholecystecomy without any problems. If it helps you in your decision, I did not find the surgery/recovery at all that bad. 1Day of bad chest pains from Co2.
  Wish you well, and thank you so much for your kindness.

[nursechrista]

I have been wearing my event recorder for a couple of weeks and have been sending them in strips, I called my doctors nurse and told her i was breaking out all over from the dots and she talked to him and he looked for my strips and said the same thing he always does i dont need to be freaking out about my pvc's.  I actually have very few maybe 20 a day but i feel everyone of them.  So how do i keep from having all this anxiety come up when it happens, its like panic sets in before i have time to even think out not panicking.

[Momto3]

I just finished reading through this thread and I must admit I am shocked by your doctor's response to a diminishing EF!!  Abnormal EKG's, irregular heartbeat and a reduced EF and your CARDIOLOGIST says not to worry about it!  I'm not saying your should worry, but it would seem that consistent follow up and medication were are essential.  OMYGOSH!!  I had PVC's for years and years and they were nothing more than a nuisance.  That is, until once echocardiogram revealed a reduction in my EF!  I was put on medication and it was determined that I had PVC-induced cardiomyopathy....I didn't really have any symptoms until a couple months later.  Nonetheless, it was not ignored.

So, your most recent echocardiogram shows an EF of 15%.  The ICD makes good sense given that information.  My Dad has CHF and a reduced EF and just had and ICD implanted about a year ago.  The doctor said the same thing, he is at an increased risk of VT or VF.  It may never happen but research shows the likelihood is greater for patients with reduced EF.  

Have you been on Coreg for 4 years, or only since the most recent test?  With the medication and a healthy diet, you may experience an increase in your EF.  Thank goodness you are seeing a different cardio!

I wish you the best with the ICD and hope that all improves for you!  

Please keep us posted.
Connie

[Barbmag]

Can you explain what PVC induced cardiomyopathy? Does it mean that PVC's caused it? If so, how many PVC's does it take before someone could develop cardiomyopathy? I have PVC's and PAC's frequently and have for years...should I be worried??? I was taking a BB but that did not seem to help and neither did the Varapamil, so I am drug free as of now. MY EP said to try 50mg of Toprol since the 25 mg did nothing but I just hate to take anything! I am the worlds worst!!!! I also don't know what Ef stands for when you said you had a reduced EF. I need something else to worry about, ya know!!!! :)
Thanks for your reply!!!!!

[Momto3]

Yes, very frequent PVC's caused the cardiomyopathy.  I had PVC's for about 25 years and they would come and go.  About 10 years ago, I went to a new EP because they were driving me crazy.  She ran the normal tests and the PVC's were "benign."  I have mitral regurgitation so I have an echocardiogram annually.  In January 2001, my Holter monitor showed 22,000 PVC's.  Still benign!  

In December of the same year, I was in for my stress-echo.  A few days later, I get a call at work and the doctor lets me know that I did well on the test BUT, she said my EF (ejection fraction - the percentage of blood pumped from the left ventricle; normal is 55-70%)  had dropped.  I didn't understand too much about what was going on, but I did get the drift that more tests were in order.  I was admitted to the hospital and started on anti-arrythmics to see if getting rid of the PVC's would increase my EF.  I stayed on it for about 3 months (lousy side effects), then tried rhythmol (not as bad).  I'm like you and when I found out it was meds for life, I asked about the ablation.  

I was having thousands/day for a long time.  I was so used to them that I don't really know how many months I had that many.  I wouldn't worry about developing PVC-induced cardiomyopathy, but I'd be aware of the possibility.  If you start to feel short of breath or notice other symptoms, let your doctor know.  Almost always, the PVC's are just a nuisance (a BIG one for many of us!).  

I took Inderal off and on for about 12 years and eventually they just didn't seem to work.  I do NOT like taking meds either!  You may, or may not notice any difference by changing the dosage of your BB.  But, if it works, that could be nice : )

I hear ya on "something else to worry about."  I sure wish I knew why we do that!!  When my kids were growing up, I worried about EVERYTHING!!  I'm better now, not great, but better... LOL

You can post here or send me a private message if you have any questions, etc.  I see you're in NC!!  I've only been here for about 2 1/2 years, and I really like these winters!

Connie

[Barbmag]

Thank you so much for the additional info!!!! I have a lot to learn even tho I read everything I can get my hands on!! Just want to know everything!!!!
We are new to NC as of last spring!! Like it ok!!! Just wish it would rain!!!
Take v good care!!!!!

[Sirenet]

  Hi and thank you for your comments. How has your Dad  felt since ICD implantation? Has he noticed any difference ( as a pacemaker), or has it just been serving as backup emergency for defib?  Has he complained at all about it affecting his day-to-day activities? I hope that it has gone well for him.
  As for me, I am still quite confused despite my trying to learn as much as possible. To answer your question re; coreg, I have only been on it since my release from hops, 1-8-08. Last week they increased it and once again found myself knocked on my butt for low BP. I have always been lucky with a healthy BP, but since meds, I am in the 90/60 range. I am tall 6'3, 189 lbs, so it hits me. Occasionally it is in the 80s/40-50s, and I must stay in bed. Dr's have pleaded with me to stay with meds so they can cont to increase, but geez, it is tough. EF was 15 from cath, the echo showed it to be 24.
  While in hosp, I set off the alarm about 5-6 times going into V-tach. Non-sustained in the 15- 25 beats range. Nurses came in took vitals manually and drew blood for hemodynamics. Also printed strips. The V-tachs are definitely the concern along with the hypokinesis. I generally have pvcs about 12-20/ min, tests show. EP has discussed possible ablations during EPS for ICD.
  I am just so overwhelmed right now, trying to maintain good mental outlook. Being honest it is tough, but trying. I have always been active but my cardiologist has limited my activity to just 15 minutes of walking !!  Gotta be kidding me....
  But as yourself, I too have been awaiting spring training. Pitchers/catchers report end of this week !!!  Alrighty  !!!   ( Met fan her, as painful as that is, lol)
   Thanks again, and enjoy your Sunday !  
  

[Momto3]

My Dad had a quadruple bypass in 1998 and I think it was about 1 year later that he got a pacemaker (because of bradycardia).  Up until November 2006, the pacemaker was just fine.  But, new studies show that when the EF is 30% or lower, an ICD should be considered.  Apparently, this group of patients is at a higher risk for potentially serious cardiac "events."  The only problem my Dad has had with the ICD is that one of the leads (he has 3) is near the phrenic (sp?) nerve so he sometimes feels like he has the hiccups in his abdomen.  The doctor said he can turn off the third lead (helps his heart to beat in tandem), but as long as he can tolerate the sensation, he is better off with the ICD.  Sometimes the doctor has difficulty placing the leads (scar tissue, location, etc), but I get the impression most people don't have this problem.  For my Dad, the ICD is supposed to be a backup for an emergency and the extra wire is to keep both sides of the heart beat well together.  If he didn't have the 3rd lead, the ICD would still work.

I know that the more Coreg you can handle, the better.  Hopefully, you will adjust to the increasing dose and feel more comfortable.  I know when my BP was upper 80's low 90's over 50ish, I was also tired.  My medication was adjusted and it's been better.  You doctor is probably trying to get your medications to a point where they provide the optimal benefit and also keep side effects to a minimum.

Sounds like you kept the nurses pretty busy!!  Have you decided to go ahead with the ICD?  I hope that you have a compassionate and patient doctor.  Especially, since you have been sort of blindsided.  It sounds like your new cardio is doing his best to get you "up and running" but not just yet.

"Pitchers/catchers report end of this week!!!"  NOW, that is GOOD news!!  Being a Met's fan is OK until October : )

Connie