lynnie22 Posted February 23, 2023 Report Share Posted February 23, 2023 It’s been a long time since I’ve been on here. I’ve been managing my pots for quite a long time. Recently, however, they discovered a large hole in my heart and did a PFO closure. That was six weeks ago. Since then, I’ve developed a terrible arrhythmia with heart rates going way up and way down. Of course the cardiologist who did the surgery doesn’t know much about parts. They’ve taken me off all beta blockers because when I was on them, I would get terrible pounding in my heart a few hours afterwards, accompanied by very low heart rate in the 40s or 30s. They now are starting me on a calcium channel blocker. I have no idea what to do. The pots, of course is much worse along with this new arrhythmia. Are there any suggestions? Help! lynnie Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 24, 2023 Report Share Posted February 24, 2023 12 hours ago, lynnie22 said: They’ve taken me off all beta blockers because when I was on them, I would get terrible pounding in my heart a few hours afterwards, accompanied by very low heart rate in the 40s or 30s @lynnie22 this has happened to me before when they were trying out beta blockers on me. In my case this was because the beta blocker was too strong and we decreased the dose. Then it was not strong enough and we tried a different one that worked ( I tried 4 different beta blockers ). I am also on a calcium channel blocker and do extremely well on it. However - it is not for every type of POTS. Many POTS people suffer from excessively dilated blood vessels, I on the other hand have the opposite - due to too much adrenaline my vessels get constricted and dont relax. A calcium channel blocker works by dilating the vessels. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted February 24, 2023 Author Report Share Posted February 24, 2023 Thank you pistol. Did you get very low heart rates as well? Well, they’ve put me on the calcium channel blocker in a very low-dose and my heart rate is way up there with occasional dips and will see. I’m not sure to be honest what kind of POTS I have, but when I was originally tested years ago, my cortisol was high. Finding a POTS doctor is not easy. Thank you for sharing your story, which is very helpful! lynnie Quote Link to comment Share on other sites More sharing options...
Sushi Posted February 24, 2023 Report Share Posted February 24, 2023 After work in the atria, there will be a healing period in which arrhythmias are more likely. (I just had a cardiac ablation so am familiar with this). This period is about 3 months. When they do trans catheter cardiac procedures they actually create a puncture in the atrial wall and strangely some get migraines or migraine auras during the healing period. So, perhaps this problem will resolve in a few months as the atrial wall heals. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted February 25, 2023 Author Report Share Posted February 25, 2023 I hope so. The surgeon said that it is common to get a fib but he has never seen heart rate drop into the 30s on beta blockers with this procedure. Even when stopped my heart rate drops into the 40s and causes lots of palpitations. He said the healing. Is a couple of months. I’m hoping it’s part of that but it feels like a reactivation of all my pots symptoms too because my heart rate is now zooming up to 130 when I stand. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 25, 2023 Report Share Posted February 25, 2023 8 hours ago, lynnie22 said: He said the healing. Is a couple of months. I’m hoping it’s part of that but it feels like a reactivation of all my pots symptoms too because my heart rate is now zooming up to 130 when I stand. I am so sorry, that sounds terrible! And several months of this is a long time! Please be careful during this period of healing, and take extra precautions by resting and not overdoing things! Whenever I am in a bad flare and get symptomatic when standing ( I am prone to fainting and seizures ) I make sure I do exercises sitting and lying down, and I get up VERY slowly. Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted February 28, 2023 Author Report Share Posted February 28, 2023 Thanks! It’s exhausting. Quote Link to comment Share on other sites More sharing options...
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