PVC nightmare

Posted by kpryor1982 @kpryor1982, Jan 19 11:43pm

Hi, it’s me again. I’m sorry, but I’m just struggling really bad and this board is helping me. The PVCs have gotten worse and I had my worst day ever with him yesterday to the point I was having one every five seconds to 10 seconds and I just don’t understand. I took the potassium out of my morning meds this morning and started a multivitamin instead, and I kept the magnesium and for most of the day I thought they were gone minus a few here and there. But every night when it comes about 7 o’clock, they start coming and they keep coming and they keep coming and I just sometimes they feel different and they feel like my heart’s weaker or something. I don’t know how to explain it. I don’t get lightheaded. I don’t get dizzy. I don’t pass out and I know they’re benign because I’ve had every test you could possibly have with every specialist but I don’t wanna live this way. I can’t. It’s too hard. I’m scared to go do anything because I don’t want to ruin everybody else’s time by having a heart attack or going into a fib or something I’m 43. I don’t want to live the rest of my life like this.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

Profile picture for carbcounter @carbcounter

@kpryor1982 well, I've been there too, had it seriously bad for one year and doctor after doctor just shrugged it off, and plenty bad enough for several more years, but I'll give the doctors this much - I survived, with apparently no lasting effects, afaik.

I was in the hospital for a few days for something else, and hooked to the monitor for a few hours, and the PVC and PAC lights are going off like a pinball machine, and the computer didn't care, and the nurses didn't care, and the doctors didn't care. Been on Holters and AI Holters and "Event Monitors", and the event monitor went off a few times but NOT from the PVCs and PACs, and the AI Holter reported "NOTHING" when I had hundreds of PVCs and PACs including some (or something else?) that left me almost unable to walk. "Nothing". SMH

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@carbcounter it’s so hard. Hearing “you’re fine. Learn to live with it”. It’s debilitating for me. And my panic disorder makes it a million times worse.

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Profile picture for chickenfarmer @chickenfarmer

In case you missed my commnet on another thread, I was in much the same state as you in 2024 - PVcs and PACs at ahigh level - 20 to 30% of beats and feeling Afib symptoms My EP gave me the same message - PACs and PVCs are no big issue, everyone has them. Well not to the level I had. So he offered to put me on Multaq an antiarrythmic drug. But I'm opposed to antiarryhthmics because of side effects and the fact they are famous for losing their effectiveness with time. He also offered another ablation. First one in 2017. Then in passing he recommended that I raise my TSH level (Thyroid Stimulating Hormone) as my TSh was less than 1.0. (I take levothyroxine daily as my cancerous thyroid was surgically removed 35yrs ago). it tooks a few weeks for the TSH to increase but after it reached about 5.0, the PAC/PVCs went away. I repeated the test and same result. then I visited Dr Google and found there is a recognized link between hyperthyroidism and arrythmias. By the way if you don't have a smartwatch that can record your heart rhythm, you're flying blind. Holter monitors are OK but inconvenient and temporary - watches are better. I've owned both Samsung Galaxy as well as Iwatch. I've also used a device from Kardia but I prefer the Iwatch. There's also at least one implantable devcie - Medtronic Link which can record 24/7 for several years. More expensive and needs medical folks to install but appears to be the best solution for someone wishing for continuous monitoring - I have no experiene with Link. The Iwatch is reported to be highly accurate in Identifying Afib/Flutter however it fails to differentiate between PVC/PAC and Afib so in 2024 my watch was continually reporting that I was in AFib which prompted my EP visit only for him to say that the watch was wrong, (There's an online service, QALY, that for a fee will interpret your smart watch traces. ) My experience may be separate from mine but if you haven't chased this rabbit hole yet im recommend doing so. I also recommend "The AFIB Cure" by Bunch and Day which has many lifestyle change recommendations to reduce arrythmias.

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@chickenfarmer Hi...just wanted to chime in here in regard to TSH. Mine was 15.56 if you can believe that! My PAC's were out of control and I was SO sick. Once we got the TSH back in normal range, I've been much more successful using Diltiazem to control the PACs

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Profile picture for judy3276 @judy3276

@chickenfarmer Hi...just wanted to chime in here in regard to TSH. Mine was 15.56 if you can believe that! My PAC's were out of control and I was SO sick. Once we got the TSH back in normal range, I've been much more successful using Diltiazem to control the PACs

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@judy3276 thanks for sharing your experience. I haven’t experienced any arrhythmias with that high TSH. My highest value was around 9 in 2022. need to study my traces from that time to see status of arrhythmias. I have read some on the relationship between TSH and arrhythmias there is general consensus that hyperthyroidism is correlated with more arrhythmias however there’s not so much agreement on how hypothyroidism affects arrhythmias. My current TSH level is approximately 4 which seems to be a sweet spot. I’m still searching for an endocrinologist who is versed in thyroid effect on ectopic to optimize as hypo is not fun either. I’m not using any medication but PVC/PAC have disappeared whereas in 2024 about 25% of beats were non sinus. Funny in that I’ve tried Kardia, Galaxy and I Watch. All conclude that PAC/PVC traces are AFIB even though my EP and QALY dispute this. Guess the device guys need to improve their algorithms. This all folds in to my status as post ablation and not on Elliquis. I monitor rhythm frequently to insure I take Elliquis if AF returns.

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Profile picture for drdianeschneider @drdianeschneider

Hello, kpryor, This is my story of how we dealt w/ my sudden appearance of constant PAC's, trigeminy and bigeminy, which were driving me nuts (yes, I believe that's the technical term 🙂 ). I was already taking 180 mg of extended release diltiazem daily, but it wasn't stopping the ectopics. My cardio who is not an EP said, "Increase diltiazem to 240 ER, and add 25 mg of metoprolol twice daily." It took a few days, but it stopped all of the ectopics completely. Not everyone is a candidate to take BOTH of these meds together, but I have no structural heart issues or other contraindications. (I had been on metopolol by itself for the last few years, but only 12.5 mg twice daily, and mainly because I take flecainide PIP to stop AF episodes.) I don't seem to have side effects from any of these meds. This regimen might prove to work for you--I hope so. Most of us feel that ectopics are far worse than having AF episodes.

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@drdianeschneider When I started having PACs, I didn't know what they were, but I soon discovered that 1000mg L-Carnitine Tartrate BID got rid of them.

There is a long-term concern with TMAO when taking Carnitine regularly, so I am interested in finding a way to check my TMAO level.

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