New to group, wanted to share my arrhythmia story.

Hi, I am glad I found this group, as its interesting when doctors rarely tell you who to talk to to share stores, offer help, encouragement or where to ask for help outside a clinical setting.

Well, lets see...I am 55 now and I was officially diagnosed with PCVs, atrial flutter and supraventricular tachycardia in January 2021. I started having heart issues in October of 2019, with no obvious trigger. Except I was a sugar addict and had an extremely high-stress career.

So after an ER visit with pcvs and an extended 3-4 heart rate of 160bpm, the doctors said...oh you're fine. It did calm down as they did nothing to fix it in the ER. That week, I saw my primary doc, who advised me to take Lexapro. I eagerly and happily gobbled it up. But after about a month of minor arrhythmia, I developed akathisia. Didn't sleep much for almost a month. And the palpitations went nuclear during this time.

Suffice it to say, my quality of life was poor and thought I should end it. But Thanksgiving day I was able to talk to an emergency psychiatrist and they said "get off it now"...but do it slow. I did not. I went cold turkey. As you can guess, the palpitations got worse, and I had some memory loss because of the abrupt change. I saw no alternative.

Anyhow, weeks passed and I started to feel much much better. Now off of the Lexapro and trying to re-coup some memories, my doctor thought it would be a good idea to put me on Xanax. In my stupor, I gobbled that up too. This went on for about 6-8 months of arrhythmia problems, anxiety (induced in part by larger and larger does of benzos). They put me on Xanax, valium and klonopin. I became very dependent and pleaded with my doctor to help me get off of it.

Meanwhile the arrhythmia did not improve. In July of 2020 my doctor thought to give me 150mg of metoprolol. I ended up in the ER with a resting HR of 38. Thought that was the end. I reduced it to 50 of the next few days and felt better, but no improvement on the PVCS. I was getting 6-10K a day.

The constant adrenaline surges were insane. I wanted to run marathons, but all I wanted to do instead was sleep, which was extremely challenging. Eventually, I learned to live with it, except it made my depression worse, feeling that it will never stop.

Eventually got an appointment with a cardiologist in October of 2020, who adjusted my meds and got me into an EXCELLENT electrophysiologist. He did all the tests. The worst was the stress test where they pump you up with drugs and get your heart rate up without exercise. Had to have the "antidote" to correct it.

Anyhow, got the official diagnosis, and unfortunately I was NOT a candidate for ablation, as he said, your arrhythmia is very hard to know exactly which node is activating it. But gave me flecainide with does an excellent job of controlling 99% of the issues.

I still have breakthroughs as he said I would, and they usually happen when I am most stressed or sick. I have had 3 bad breakthroughs this year lasting a few days to a couple weeks at a time.

They do shut me down sometimes, but I try to keep on keeping on. But as many of you have talked about, the adrenaline surprise surges are the absolute worst. I try to lean into them most of the time and realize...I have had these. They won't kill me. Help is close by. I am safe.

I keep repeating that, and it does help. I do a lot of distractions to help. It helps maybe 50-60% of the time.

But there are days, where I am useless to the world and feel like I am never going to get better. There are more days though where things are awesome. We still travel, I have taken up new hobbies and went back to college to get my archaeology degree. (Even though I can't do the physical part, I still write).

I don't and can't hold a "regular" job as I have too many accommodations. So I am my own boss, set my own hours.

But ultimately, I think it's the lack of control and knowing how to accept that.

I try all the techniques to stop them, vagus nerve stuff, supplements, breathing, meditation. Nothing helps stop them in their tracks. Just time. For whatever reason, when the breakthroughs start, they just have to run their course. And the more I learn about viruses, specifically covid/long covid and EBV re-activation and the role of inflammation, the more it makes sense for what is happening to me.

I have learned how much inflammation can affect the heart and cause irritation/agitation and how to control "some" of that with food, no alcohol, caffeine, wheat, chocolate (sad face) and too much sugar.

Anyhow, that is long. I hope that helps, that we are not alone in this.