jimco1
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jimco1, February 12,  2021  10:50am EST

Just sharing my experiences with pvc's in hopes of finding a cure for this horrible condition.

Hi all,

Short version of this long post:

I've been dealing with random pvc's for the last 7 years. They occur for minutes, or days, or months at a time, and then usually disappear for days or months at a time...very frustrating to live with. They usually feel about 3 or 4 different ways for me (sometimes I can really feel the thud, other times it feels like a weak extra beat, other times it's like a short flutter, and other times more raw and uncomfortable). Also sometimes the extra/skipped beats occur every other beat, sometimes every 3rd or 4th, and sometimes it's constantly changing and I feel I have an irregular heartbeat. I've managed for the most part to believe that they are ok to live with as I've passed every ekg, echo and nuclear stress test I've had. The fear and anxiety still rears it's **** head  when it gets bad, but eventually it seems to clear up. I feel like it very well could be related to gas coming up the esophagus (burping for most people, but I don't burp, the gas never makes it up to the throat but makes a loud burping sound in the chest) Hope this helps someone else just knowing that there are others living with this terrible and frightening condition.

Long version:

This forum is a great resource for those seeking support in dealing with pvc's. I myself am a long-time sufferer as well and reached the point of just wanting to share my experience in hopes of helping others deal with the great anxiety and fear this condition brings.

I first experienced a heart abnormality sometime between 18-20 years old (can't exactly remember as I'm now in my early 50's). They started as a brief, but terrifying flutter. I would get them maybe a couple times a day. Went to the doc and was told everything looked good, and he thought that if I just did some aerobic exercise next time I felt them they would likely go away. Well, that helped put my mind at ease for the most part, but it was still terrifying whenever they occurred. Oddly, after several weeks/a couple of months (again can't remember exactly) they just disappeared. For the next 25 years or so I didn't have any heart issues at all! I was very active and in good overall shape. Diet wasn't great, but when you're young you can get away with a lot more!

Fast forward to around 2014, suddenly pvc's started. They were different that what I experienced as a teen, and they were much more frequent and persistent. After about 10 days, went to the ER and was diagnosed with pvc's...go home and don't worry about it they said. Well, for the last seven years or so, they have been occurring very sporadically. They will stay away for several months at a time, then randomly start back up, sometimes only lasting for a few minutes, and sometimes for two to three months, or any other random time frame in between. I've gotten to the point that they usually don't bother me mentally, but there are times, like recently, that they feel different and I start to worry/mini-panic. Went to the doc recently and they said my ekg looked great, but I know for a fact that I had many pvc's during the ekg as I can usually feel every one of them. Tried a beta-blocker for a few days, but they didn't do anything, and I'm not big on taking such powerful meds due to the potential side-effects. I've been taking magensium supplements and so far it's inconclusive whether or not they do anything. I feel strongly that they are somehow related to gas coming up the esophagus - maybe something to do with the vagus nerve??? There seems to be about an 80% correlation to belching in my case.

Anyway, these pvc's are extremely difficult and frustrating to deal with. Knowing that there are so many others with similar situations definitely helps. I hope my experience can help provide some relief to others dealing with this awful condition.

The anxiety is powerful and debiliating at times...let's figure this out!

5 Replies
  • AHAModerator
    AHAModerator, February 12,  2021  5:20pm EST

    Thank you for sharing your story with us and joining the Patient Support Network. We hope you find it a useful resource and community.

    I'm not a medical professional so I can't answer any of the specific questions you have about PVC's but the American Heart Association has some resources that may be useful here:
    https://www.heart.org/en/health-topics/arrhythmia/about-arrhythmia/premature-contractions-pacs-and-pvcs

    I also encourage you to bring your specific questions to your medical team as they will know your full history and be best prepared to address them. 

    The feelings you have of fear and anxiety are normal but remember you are not alone. You are correct that there are others who also experiencing similar situations and hopefully, some connections will be made here with people who are facing similar challenges.

    Best,

    AHA Support Team

  • TaiMundo
    TaiMundo, February 14,  2021  6:41pm EST

    Hi, I just want to say I understand your frustration completely.  I have my PVC problem for at least 15 years. I am 62, otherwise healthy.  I tried almost every drug possible.  Flecanide works the best but it caused me to have palpitations in the middle of night.  I am pretty thin so I feel every single pvc.  
     

    I finally decided on ablation.  My EP doctor said I don't have that many and warned me it may not work.  I was having 1 a minute or less but it was so uncomfortable each time.  Well I went for it a couple days ago.  Guess what, I only had 4 PVCs the whole time so the procedure was not successful ( most likely-he said he tried his best and I believe him).  Now I am having 2-3 x more pvcs than before the procedure, and I feel worse.  Hopefully it would calm down.  
    I think the anesthesia got rid of all my pvcs.  I am very depressed about it.  
     

    I just want to give you some support.  I was hoping for a life without pvcs and now it's worse.  

  • jimco1
    jimco1, February 15,  2021  2:47pm EST

    Hi TaiMundo,

    Thanks for your support, and sorry to hear about your situation. I can't imagine how disappointing it must be to have decided to go through with a procedure such as ablation and having it not help. I'd be terrified to consider the option, but at some point may have to.

    I'm similar to you in that I too am thin (hereditary) and feel every PVC (at least as far as I know). I'm also relatively healthy otherwise. I do feel as if esophageal gas is related (burping/belching).

    Have you been able to correlate the PVCs with any particular foods or gastro-related symtoms? I'm sure you've already looked into magnesium and potassium?

    Hopefully as we all share our experiences, we can find some common causes and ultimately a cure. You've made it this long dealing with these, so you know you can do it. For me, some days are better than others, and those better days are the ones I try to focus on.

  • BrandiMarie
    BrandiMarie, February 21,  2021  9:22am EST

    I suffer the exact same and am going through a flare up right now. I have also had a cardiac abalation for SVT but the PVCs seem to be stuck with me. Thank you for sharing and remember that we are not alone!

  • jimco1
    jimco1, February 22,  2021  9:52am EST

    Hi BrandiMarie,

    Thanks for the support. I understand the flare ups, they are both scary and frustrating, especially when a cause isn't known. Mine seem to come in waves that sort of ramp up, then remain consistent for some random amount of time (days/weeks/months) then ramp down and disappear for another random amount of time. I've been keeping a spreadsheet trying to find some clues. Hopefully as more people share their experiences we can all find some clues and figure this out!

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