Worry

Posted by charlene1479 @charlene1479, 2 days ago

I find myself worrying about when I’ll have the next episode. Also I’ve become reluctant about driving for fear of having an episode.

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What kind of an 'episode' are we talking about? If it's a tachyarrhythmia, formally diagnosed, you are probably on a rate control medicine, and maybe also on an anti-arrhythmic drug? Certainly you'd be on a direct-acting oral anti-coagulant??!? (DOAC)
I have been treated for atrial fibrillation, and can sympathize because I was quite symptomatic, and became deeply anxious over time. Fortunately, mine only came on during waking hours, and for some very odd reason, my heart would calm right down at night and I got good quality sleep...which really helped to boost me during the less-than-fun days. Many AF sufferers find that theirs starts up within minutes of lying down, whether for a nap or for a night's sleep. I can't imagine......what that would be like.
It would help to know what your 'episode's are, a formal diagnosis (if you are comfortable telling us what it is here). If it's AF, it is not a death sentence; it's not going to kill you. If you let it go on and on for weeks and months, unchecked, it can lead to subsequent problems, but the worst of AF, especially early in your history with it, is just a pain where the sun don't shine. With some mental gymnastics, a lot of reading and sharing, you can control some of your fear and just accept that, until you get to an electrophysiologist for some mechanical remedy, this will come and go.
The other thing is that most AF sufferers accept that some activities or states (including mood and anxiety) can launch an episode of AF. We call them triggers: They can be: sugar, coughing, sneezing, belching, straining during lifting, straining during a bowel movement, bending over to tie shoes or to pick weeds, too much calcium in the diet, too little magnesium and/or potassium in one's diet, too much caffeine, other prescribed drugs...the list is lengthy. You might soon learn what sets you off, and from then you can just avoid it.

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@gloaming

What kind of an 'episode' are we talking about? If it's a tachyarrhythmia, formally diagnosed, you are probably on a rate control medicine, and maybe also on an anti-arrhythmic drug? Certainly you'd be on a direct-acting oral anti-coagulant??!? (DOAC)
I have been treated for atrial fibrillation, and can sympathize because I was quite symptomatic, and became deeply anxious over time. Fortunately, mine only came on during waking hours, and for some very odd reason, my heart would calm right down at night and I got good quality sleep...which really helped to boost me during the less-than-fun days. Many AF sufferers find that theirs starts up within minutes of lying down, whether for a nap or for a night's sleep. I can't imagine......what that would be like.
It would help to know what your 'episode's are, a formal diagnosis (if you are comfortable telling us what it is here). If it's AF, it is not a death sentence; it's not going to kill you. If you let it go on and on for weeks and months, unchecked, it can lead to subsequent problems, but the worst of AF, especially early in your history with it, is just a pain where the sun don't shine. With some mental gymnastics, a lot of reading and sharing, you can control some of your fear and just accept that, until you get to an electrophysiologist for some mechanical remedy, this will come and go.
The other thing is that most AF sufferers accept that some activities or states (including mood and anxiety) can launch an episode of AF. We call them triggers: They can be: sugar, coughing, sneezing, belching, straining during lifting, straining during a bowel movement, bending over to tie shoes or to pick weeds, too much calcium in the diet, too little magnesium and/or potassium in one's diet, too much caffeine, other prescribed drugs...the list is lengthy. You might soon learn what sets you off, and from then you can just avoid it.

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But what if you get to EP and his mechanical fixes don’t fix Afibs/flutters? My concern is the overwhelming fatigue and no appetite caused by Afibs/flutters.

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@abob

But what if you get to EP and his mechanical fixes don’t fix Afibs/flutters? My concern is the overwhelming fatigue and no appetite caused by Afibs/flutters.

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I would seek out someone like Dr. Natale at the Texas Cardiac Arrhythmia Institute in Austin. Or Dr. Santangeli at the Cleveland Clinic. Those two are at the top of their class, and their success rate is phenomenal. I think seeing a local EP is worth it, especially if they're very busy and highly regarded, and of course if they can claim a success rate for index ablations above 75%.

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@charlene1479
I have the same question as @gloaming
What kind of episode?

Question, have you been diagnosed with anxiety/panic disorder. Many times this type of episode is a anxiety/panic attack which has pounding heart, etc.

What have your electrophysiologist (EP) diagnosed you with? If you don't have a EP would really suggest you see one.

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I have been diagnosed with SVT in the past two years, but have probably had it much longer than that and it was diagnosed then as migraines. I just finished a two week Zio patch and I’m waiting for the cardiologist to read it but the preliminary issues 52 episodes of SVT in two weeks.But it seems every time I’ve gone sometime without any episodes, I have one where I’m suddenly dizzy and grabbing onto something to present myself from the feeling of falling. I am on carvedilol 12.5 mg twice a day. Metropolol gave me headaches and made my heart rate and BP too low. I have had a cardiac echo and a cardiac stress test, both of which were normal. I have seen a cardiologist and have been referred to see one again.

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i need to see an EP. is it allowed here to ask for recommendation of an EP. I have persistent Afib

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@anonymous81

i need to see an EP. is it allowed here to ask for recommendation of an EP. I have persistent Afib

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Yes, such questions are/ought to be allowed because they help put troubled, deeply anxious, and needy people in touch with experts who can possibly help them.
I know of two EPs who are world class, or know of them, but have no experience with them. The first, widely touted over on the free forum site afibbers.org, is Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin. He travels to several hospitals in the American west, including La Jolla and Los Robles. He gets patients from all over who learn of his skills and record of success. I know less about Dr. Pasquale Santangeli at Cleveland Clinic, but he has an enviable reputation. The only other leader in the field that I know of, and he trained Natale, is Dr. Pierre Jais in Bordeaux, France. He also treats international patients.

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@charlene1479

I have been diagnosed with SVT in the past two years, but have probably had it much longer than that and it was diagnosed then as migraines. I just finished a two week Zio patch and I’m waiting for the cardiologist to read it but the preliminary issues 52 episodes of SVT in two weeks.But it seems every time I’ve gone sometime without any episodes, I have one where I’m suddenly dizzy and grabbing onto something to present myself from the feeling of falling. I am on carvedilol 12.5 mg twice a day. Metropolol gave me headaches and made my heart rate and BP too low. I have had a cardiac echo and a cardiac stress test, both of which were normal. I have seen a cardiologist and have been referred to see one again.

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Charlene, thankfully, your arrhythmia, technically a tachyarrhythmia, is fleeting, so it's paroxysmal...that's the correct medical terminology. It comes and goes on its own. It makes you feel that way because, with that rapid rhythm, your atrium doesn't have time to fil itself with blood properly before its next contraction where it forces blood into the ventricle below it. You can understand that, a poorly/incompletely filling vessel that must forcefully empty itself too rapidly will not supply the needed volume to the ventricle, which cannot supply the oxygenated blood your brain and organs need, nor your muscles, to keep them functioning properly. You get dizzy, winded, unsteady, and naturally that is not normal, so you feel anxiety and fear. Perfectly understandable.
It's good news that ischemia is not at play. Your echo shows normal results, so your heart is not short of blood supply due to blockages or severe constrictions in its own arterial supply, which is what ischemia means. (is KEE me ah). This means your symptoms come about solely, and when, your heart is in SVT. I believe SVT can be controlled chemically, but not always well, and often not for long...a few years at most. So the gold standard for treating most arrhythmias is still a catheter ablation. In the right hands, the best EP you can agree to handle your case, you stand a good solid chance of beating this.

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I understand your fear. All this is new to me as I was recently diagnosed with Afib and was out on blood thinners to prevent pooling.
I never had symptoms but still very cautious and every time I feel a slight twinge I wonder if this it..the bug one, but Still drive, I still do my work outs and still go for my walks. Unless my doctor says otherwise I will continue doing as I have done in the past. I will have an internal examination on the 26/June. I will see how much danger I'm in at that point.. it's no good to tell folks not to worry..just stay busy stay in touch with family and friends.. good luck going forward!!🙏

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