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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.
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@foundryrat743 - Like you I know how you feel when your "specialist" doctor has the I don't care attitude. Almost the first words out my cardiologist mouth with my first appointment were "you know that people just live with Afib." I was getting better care and information from my primary care provider who is a Family Nurse Practitioner (FNP). It didn't take me long to realize that I needed to go out on my own and find better cardio care. Which I did and was treated by doctors and staff who obviously wanted to do what was necessary to provide some level of cure and not just tell me to live with it. After an ablation I am Afib free now for almost a year and am back to doing what I need to do on a daily basis.
I had a Nuclear Stress Test done to look at some plaque build-up issues and it showed some other potential problems with my heart. At the request of my FNP I had another appointment with the cardiologist which was a disaster. Did not have and had not seen the latest test results and asked why I was having some procedures done. Procedures that were done almost a year ago. It was like he was on another planet. Visit lasted about 5 minutes tops, he got up shook my hand and told me to just keep doing what I was doing. That is the last visit with that doctor.
That's quite a story. Makes mine seem modest, both problems and poor medical experiences, long journey to progress. I would think that your reports of adrenaline surges that still continue would merit further investigation, if you had no other problems that would still deserve care, so perhaps you've had that but didn't want to add it to the post here.
But I had a question when you say you {how to control "some" of that (inflammation) with food, no alcohol, caffeine, wheat, chocolate (sad face) and too much sugar}. Does that mean you control the sugar, or are still consuming too much? Have you tried the most common supplements many take for many issues and especially inflammation: curcumin and fish oil? Few doctors will recommend this unless they happen to have formal nutritionist training and very few do - but those who have the training would recommend it immediately, possibly along with some other things.
If you are still eating too much sugar that deserves further discussion, but on the side I would say that a modest consumption of chocolate is usually still more helpful than otherwise, the darker varieties having less excess sugar. The benefits of chocolate are several and again a modest amount is usually acceptable even for type2 diabetics who must limit sugar and carbs. It has both natural beta blockers and some mood elevators, both helpful for most people with any kind of arrhythmias! And it's easy to simply try and see how it goes.
I have had paroximal afib for about 5 years. After gojng off amiodorone a few years back I had an ablation. The ablation was not successful snd I went back into afib- this time more persistent. I was prescribed rate control meds as rhythm control meds were not working. This past year I had a second ablation. That one also did not work and I went back into paroximal afib taking cardizam if rate got too high. The episodes have now increased in frequency and duration lasting over a week now. My EP is suggesting an av node ablation so that I can discontinue some of my meds and have my heart rate controlled through a biventricular pace maker.
Has anyone had experience with an node ablation?
@wallybrownjr My sister and I have sleep apnea. I had for years. Long story short, my sister used one of those snorkel machines for years and hated it. She discovered that if she slept in a recliner she had no problem. So for years now, I sleep with 2 pillows with me head elevated and have no problems. It beats that cpapy machine. And never cost me a dime nor my time with crazy test.
@makial This is common, so it's not off the wall....if you follow. The pacemaker will help to keep your left ventricle from trying to keep pace with the atrium above it, on the other side of the mitral valve. The upper atrium is beating erratically. The ventricle is picking up the same signal, and has what is called as 'rapid ventricular rate' or 'rapid ventricular response' depending on the team looking after you. However, a pacemaker doesn't always stop the fibrillation. You need to be clear about yes or no from the next meeting with your EP.
The two ablations failed because the EP was being conservative and didn't want to ablate more tissue surfaces inside your left atrium....I think......I hope. If he was not very skilled, that also may account for those very unfortunate failures....and believe me, I feel for you.
You would be wise, I think, and I advise, to seek a highly experienced EP some distance from you who specializes in complex cases of arrhythmia. There are many dozens of excellent EPs in the USA who do this more complex surgery. One is Dr. Andrea Natale at Texas Cardia Arrhythmia Institute in Austin, TX. Another is Dr. Pasquale Santangeli at Cleveland Clinic. Or, Luigi Di Biase, MD, PhD
Albert Einstein College of Medicine at Montefiore Hospital
New York.
I have been successful in lowering my arrythm,ias by adjusting my thyroid hormone. There's definitely a link between hyperthyroidism and arrythmias. I'm somewhat unique in that I have no thyroid and thus have to take synthetic thyroid hormone pills So my experience may not apply but seems you are searching for some things to try.
@gloaming
Thank you for the input. I am confused this time as I am in afib but my heart rate is not escalating. It stays below 90 but I am quite tired. I'll consider another opinion.
@makial Okay, this means you do NOT have RVR....rapid ventricular response. You just have a form of SVT called atrial fibrillation where rogue cells have begun to fight for control of the rhythm of your left atrium, but your normal signaller, the sinoatrial node (SA) doesn't want to give up doing it's normal job from Day One. FYI, generally, a heart rate in AF below about 110 BPM means, usually, that RVR is not involved. That's good!
I'm not an expert by any means, no medical training, but to me, you are probably looking at a third ablation, but by someone who knows what he/she faces with you and knows how to get you back into NSR. Note that such arrhythmias cannot generally be 'cured' or 'fixed'...they can only be blocked from happening, which is what an EP does during an ablation. He creates scars around the foci he/she finds via the mapping process. Those scars are impervious to the electrical impulses, so they act as a dam. If the lesions created during an ablation close off in a tight, contiguous, ring, then signal is confined to the inside of that ring of scarring. It cannot get out. So, the atrium once again only responds to the SA node, and that's what everyone wants for you.
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1 ReactionI had a hard to locate arrhythmia that really affected my life. My electro cardiologist did a pacemaker implant on one spot, but after 2 months the flutter/arrytis returned. His second one has worked. I don’t know if this is useful to you but maybe it’s like a treasure hunt? I was told I only get two, so I birds I lucked out on my 2d one…so far. 81, obese, too crippled by arthritis to exercise. What’s next? Who knows… I’m on Eloquis and propranolol.
Good luck!