Are You Stuck In PVC Hell? Where To Find Support And Advice!

My apologies to everyone who has left a comment on the blog without receiving a personal response from me. It turns out that this blog gets a fair amount of traffic, which is flattering, but also too bad in the sense that it means there are many more PVC sufferers out there who are looking for answers.

The past couple of years my PVCs have been much less intense. Still frequent, but not as intense as when they were disrupting my sleep and quality of life. I don't really know why, since I actually went through an extremely stressful few months last year. I was amazed that I wasn't more plagued by PVCs. So I'm just crossing my fingers that it lasts, realizing that an unexpected PVC "attack" can suddenly plague sufferers without any apparent reason.

To new PVC sufferers who stumble across this blog:

• Remember to read through all the comments in each of the posts on this blog. When I was writing more frequently at the height of my PVC problems, I wrote a lot about my experience, what to expect with them, and how to best manage them. Many others shared their advice and experience, which is always useful since everyone's PVC experience is unique.

• Don't forget our Cardiac Arrhythmia Support Group on Facebook. I'm the admin, so just request to join the group and I'll let you in. We currently have almost 400 members who are also suffering from PVCs and are there to offer and receive advice and support on a daily basis.

• I also want to remind everyone about the Skipping Hearts forum, run by one of our readers named Jeff. Another great resource and place to find support!

So, speaking as someone who has been to PVC Hell and back, hang in there and find solace in getting support and encouragement from fellow sufferers who know what it's like!

Just Checking In

Greetings, all fellow PVC sufferers. I know I've been a stranger to this blog lately, but I've been very busy and just haven't been able to keep up with all the comments. I'm glad to see that other sufferers have been finding us, because I get new commenters almost daily to the blog, and hopefully you are all finding some reassurance and good advice from others who understand what you're going through.

I apologize if I can't respond to each comment and question, but I know a lot of people check in regularly and most of us wonder about the same things. So it's useful to read through ALL of the comments under all the different posts. Some really great info there!

I've been going through a pretty good period PVC-wise. I still have them each and every day, probably getting several each hour, but they've been fairly mild for a couple of months and I haven't had any really bad bouts of them. Of course, I know that one is perhaps just lurking around the corner, but I try to focus on today being a good day and remember that even when that bad bout comes, it will pass.

Hope you are all well and managing. Even if I can't always respond, I welcome each and every one of your comments!

The Breathe Easy Program

Just wanted to make all of you PVC sufferers aware of a program that has worked for some people who suffer from ectopics. Make sure to check out "The Breathe Easy Program." I have nothing to lose, since nothing else has worked for my PVC's, and Stewart (the creator of the program) has been great at e-mailing me and answering my questions. I know it's going to take time and some effort, so it may be a while before I can post my results here.

In the mean time, feel free to post any questions you have here and hopefully Stewart can answer them for you.

Positional PVC's?

I like to read laying in bed before going to sleep each night and I've noticed in recent months that there seems to be a connection between laying on my back for extended periods of time and the PVC's. I can have an average day of perhaps a couple of hundred mild PVC's (which is a "quiet" day for me) and then after an hour or two of reading, I might have a horrible, sleepless night of heart-stopping sensations and jolts. And yet other nights are no problem. So it's not a set pattern, but I tend to think there is a connection.

I also sometimes get couplets and multiples and the worst ones have usually been at night when I've been awakened from a certain position (I tend to sleep on my side or stomach). Sometimes I will get up to around 40 irregular beats in a row. As soon as I sit up or turn around, my heart will go back into its normal rhythm, but NOT until then. Since it's usually the middle of the night and I'm really tired and groggy, they're very mild. I feel them, but they're not as scary as they usually are, and so I've dared to push it and see just how many multiples I get in that position without sitting up. It seems to never get back to normal on its own, and after about 40 or so, I've had enough and change positions to get my normal rhythm back.

On occasion, when bending over forwards to pick something up, I've had some really scary couplets that were so intense that I felt close to fainting.

This tells me that there must be some connection between position and PVC's. I'm just not sure why, but I tend to think that it may have something to do with the vagus nerve (although from what I understand, the vagus nerve affects heart rate more than rhythm), or perhaps some other nerve.

What Do You Know About Cardiac Ablasion?

I'd like to hear from all of you who have had a cardiac ablasion, why you had it, what it was like, and whether it's helped you. I'm especially curious about whether ablasions are ever done on those who suffer ONLY from PVC's and not SVT, VT, or any other underlying heart condition.

Regardless, whatever you can tell us about ablasion, we'd like to hear about it so that we can learn from your story.

To read a bit about cardiac ablasion, click here.

You Have To Feel It In Order To REALLY Understand!

A lot of PVC sufferers find it difficult to be taken seriously by their doctors (or even family members) because once they're told that their arrythmia is benign, they can assume that we can simply forget about it.

It's not that easy, is it?

When you feel the jolt of a PVC, or the heart-stopping sensation, or a couplet... you know what I mean! Some days they may be mild, but some days can be VERY intense as we have them all day, every day, hundreds, even thousands of them, for sometimes long stretches at a time.

To just "forget" about them is like trying to sneeze with your eyes open, or not touching your eye when a mosquito flies into it. It's a natural reflex. Even though you know logically in your mind that you're in no danger, you physically FEEL like you're going to die and so you have the natural "reflex" reaction: fear, panic, worry, stress, etc.

But in a way, the doctors and loved one who tell us to not worry are right. OK, so we can't just "forget" about them. But we do need to live, function, and enjoy our lives. And that's what groups like this are for. Even though we can't "cure" each other we help each other learn to live with the natural reflex of fear.

PVC's: Another Kind Of "Night Terror"

A little over a year ago my PVC's started to bother me more at night than ever before. Unfortunately, this trend has not changed and I continue to struggle with sleepless nights because of them. It's not every night, and sometimes I can get lucky and go for weeks without a sleepless night. But every now and again I get a really bad bout of them and may have several bad nights in a row. The PVC's are bad during the day as well, but more manageable. At night, probably because I'm lying still and otherwise relaxed, they are much more bothersome. They are also different, as I get more of a sensation of my heart stopping. The pause between the extra beats seems longer and I sometimes literally jump up in bed as a natural reflex response to feeling like I'm dying right there on the spot, not to mention the jolts from the PVC's themselves.

Last night was another bad night. I decided to not just stay in bed and get more frustrated, so I got up, had a snack, read for a bit, even though I was exhausted. Still, though, sleep was elusive until about 4 am. I had to get up before 6 am for work, but was so exhausted that I had to call in sick.

I know this latest episode will pass. They always do. But it's tough physically and mentally when my sleep is cut short. And of course, fatigue only leads to more PVC's and it can make it even more difficult to get out of this round of them.

Can anyone relate? Any tips?

Panic and Anxiety and How They're Related to PVC's

If you're prone to anxiety and/or panic, like I am, then having PVC's can make you feel like you're caught in a vicious cycle.

My PVC's are not caused only by anxiety and stress, but they are certainly aggravated by both. If I get stressed, I get more PVC's. When I get more PVC's, I get anxious and panicky, which results in even more PVC's and then life is just miserable!

It's a vicious cycle!

I posted a couple of links to the right for "The Linden Method," which I decided to try and highly recommend to anyone who has ever experienced anxiety and/or panic, regardless of whether or not they suffer from PVC's. It has been very effective for me and although it's not enough to cure my PVC's, it has made living with them more manageable.

Feel free to submit and questions or comments on the topic!

My Story

Just wanted to give a quick background about my experience with PVC's so that perhaps some of you will recognize your own experiences.

When I was about 15 or 16, I started experiencing weird sensations, which I think were the beginning of the skipped beats, but I wasn't quite sure what it was or how to describe it accurately. I do remember having some sleepless nights where I would feel myself being "jolted" awake just as I was dozing off to sleep, which I now experience more frequently and more forcefully. Unfortunately, those were the days before we all had the internet and I had never heard about PVC's. However, my doctor at the time sent me for an echocardiogram (ultrasound of the heart) and the result came back as "mild change." The cardiologist I was referred to diagnosed me with a mild and benign heart murmur (which is still detectable today, at age 30), but nothing more. I suppose he couldn't diagnose PVC's at the time because I wasn't having them all the time like I am now and I never went with the Holter monitor.

Throughout the years, I would experience skipped beats. On a bad day, I would maybe get 5-10, but I don't recall having multiple ones until much later. I always attributed it to the heart murmur, still not realizing exactly what it was. As they got worse, I began to worry that perhaps I had a valve problem related to the murmur. They were sometimes a bit scary, but didn't seem to cause any major problems and so I ignored them pretty well.

At age 26, I suddenly noticed a big change. I was having multiple skipped beats, perhaps 5-10 after another, occasionally at night as well. As well, they were generally much more frequent than before. At that time, I was noticing probably 50-100 per day. I went to my GP, who referred me to a cardiologist and so I went with the Holter monitor for the first time. The monitor picked up many of the PVC's, including at night. The cardiologist performed an EKG and echocardiogram and both came back normal. I had no structural problem with my heart. She assured me that PVC's are very common and although they feel dangerous, they aren't. At least not in my case. She said there were medications to control them, but didn't recommend them for me. I agreed and so I went away feeling relieved to have a clean bill of health. I continued to have frequent PVC's, but just accepted that I had to live with them.

Now I'm 30 and this past spring, I experienced another spike in the frequency of my PVC's. It was to the point where it was out of control. I was getting probably 300-400+ per day, plus they were keeping me up literally all night. I was getting multiples at night of 20+ and was often getting the sensation of my heart stopping, which would jolt me awake. I was exhausted, stressed, and went back to the doctor contemplating medication to supress the PVC's.

So after another round of the Holter monitor, EKG, echocardiogram, spirometer test, everything is status quo. I have a clean bill of health, even though the PVC's are at times extreme. I decided against taking beta blockers because the doctor said I would probably notice decreased performance while running (which I like to do). Again, I was explicitly told to NOT stop exercising. I find that running can actually help to get my heart back into its normal rhythm, even though I occasionally notice an increase in PVC's hours after a run.

The cardiologist said that many notice that their PVC's get worse after drinking coffee or anything with caffeine (I don't) and alcohol (I don't). I even gave up chocolate (which I love) for a few weeks to see whether it would help, but I didn't notice any difference. I do notice that stress is a big factor for me, as well as fatigue or not eating properly. However, the PVC's are often at their worst when I'm happy, relaxed, and rested. So they often occur without explanation.

So that's my story. My PVC's have certainly gotten worse the older I've gotten (some days probably 500+), but I continue to manage without medication. Still, though, it can be very scary and stressful to have PVC's and I find that I never quite get used to them.

Welcome! And A Call For Questions...

I'd first like to welcome everyone as we kick off this support group. Everyone is welcome to submit questions and comments. The more who do so, the better for all of us who want to learn how to better manage life with PVC's. Please remember to bookmark this page and come back and visit regularly. And most importantly, don't hesitate to get involved in the discussions!

I want to start by asking you all to post your questions or topic suggestions. What do you want to know about regarding PVC's? Causes? Medication? Stress management? How to cope with symptoms?

Leave a comment here and let us know what you want to know!