amurray77
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amurray77, October 21,  2019  7:43pm EST

AF Fear and Progression

Hi All:

 

This is a wonderful group and you have all been so helpful in the past. I have had paroxysmal a fib since 2018. I had one episode in 2014, and then nothing for 5 years.

I had a pulmonary embolism and presented at the ER with severe chest pain and A Fib with RVR. My rates typically go up to 176-200. 200 is the odd AF out. It has happened, but doesn’t happen often.

I was having episodes every three months, and now I get them every 6 weeks to three months. Almost like clock work. Flecainide gets me out in about 2 hours sometimes less, sometimes more.

My horrible ObamaCare insurance refused to pay for my second ablation with Dr. Natale in Austin. My first was one way Mt. Sinai in NYC. I am moving to Florida and got a great new PPO that will cover my second ablation and it is being planned for January. Thank God!

When I get episodes, I freak out and have panic anxiety. It is so uncomfortable for me. I could never live with it full time. Knowing that a fib is progressive, is that what I’m in for? Will I one day have it all the time? Can they may it so you don’t feel it? The side effects from Flec side are just awful. It makes me so full of anxiety for three days after I’m not even close to myself. 

I’m praying this ablation works, but I’m scared of progression and just wanted others advice knowing we are not the same and no two cases are the same. 

I’m prepared to have as many ablations as I need. They don’t bother me. I just want to stop the progression or slow it down. I recently read that a pacemaker can help you not feel it if you go into persistent a fib. So basically my fear is being in a fib all the time and how I would cope with that feeling? It is so awful, I can barley ha dale it for two hours. And experience or advice?

9 Replies
  • BJB
    BJB, October 21,  2019  8:34pm EST

    Amurray77,

    I had somewhat the same experience you did, except my episodes progressed to 16-18 hours each over several years. I have had paroxysmal afib for about 14 years now. At first, I panicked and went to the Emergency Room. Then I learned that I got along just fine at home if I took extra Propafenone, went to bed, and rested until the episode passed. Finally, my cardiologist referred me to an electrophysiologist for consultation. In the fall of 2017 she scheduled me for an ablation. I had shorter afib episodes, but they did not disappear as I had hoped. A second ablation in the summer of 2018 worked much better. Shortly after the end of the blanking period, I overexerted and caused a number of episodes (my fault--I should have been more patient at my age!). However, for the past 8 months I have had only two rare and short episodes (again, I think I brought them on myself by not pacing myself physically or in getting stressed out). If I "behave," I am hopeful that my chance of episodes are greatly diminished.

    I think your prospects of a much better life are excellent, given that you have had afib for such a short time and have short episodes of only a couple of hours. A second ablation may give you great peace of mind! I too panicked when I had such long episodes early in my afib, but I now have learned to take them in stride and not get stressed out. One of my triggers is stress, so I try to be diligent about NOT getting stressed out!

    Good luck with your second ablation. You have been very wise to seek a solution so early in your experience with afib. I think my biggest mistake was waiting 12 years to have the first ablation! I hope you have very positive results!

    BJB

  • depotdoug
    depotdoug, October 21,  2019  8:57pm EST

    Yes, try not to get stressed out. That's my nemesis. Excessive Exercising energy. No excessive energy which exercise helps I think. So what keeps me out of paroxysmal AFIB Or permanent AFIB?? Maybe 2 200mg Magnesium 2 X daily and lots and ff exercise. I'm still got lots of anxiety. And by the way I'm typing this while on The Treadmill at my local Fitness Planet twice daily. I'd better concentrate on jogging instead of typing.... Oh by the way my BP goes down after I'm exercising.  No AFIB. Annmurray77. Best wishes.  
    depotdoug

  • Spencer
    Spencer, October 21,  2019  9:26pm EST

    Spencer here... yep you know you are screwed now.  I'd say, not to panic.  Anxiety is like a fine wine to AFib so starving it is a good idea.  Find something to occupy your mind to give your body time to go back into NSR and to relax.  My Doug'y friend above has a good point about exercise.  That will do you good and help take your mind off the AFib.  He uses it will a well-honed accume so following his lead is a good idea.  Now, during my time in the hut house, they stuffed a coloring book in my hand and with a most authoritative tone demanded that I color.  Same idea, just less nurse Ratchet in the picture for Doug.  Anyway, a good idea to find something to help occupy your mind.  Last, the pacemaker.  It will control your low and some models your high rate, but it does nothing with the rhythm.  So installing one of those to fix your AFib is not advised.

    summary - don't panic, find something to do you life, do buy a pacemaker to fix an AFib.

    Remember.... you asked.

    Spencer.

    In the sunlight

  • amurray77
    amurray77, October 21,  2019  9:30pm EST

    Spencer:

    What do you mean I know screwed now?

  • amurray77
    amurray77, October 21,  2019  9:39pm EST

    Thanks all.  The stres something is interesting.  I believe it. I was super stressed the whole day before my a fib happened.  I brought it on myself, I am sure of it. 

  • Spencer
    Spencer, October 21,  2019  9:39pm EST

    Sorry, typo.  My path through AFib has been rather intense, so following any advice from me is probably not a good idea.  I made every mistake and seemed to have everything go wrong.  I had three ablations, two sets of cardioversion and then nearly three weeks in the hospital for my heart.  

    Hope this helps.  Doug is right about finding something to do.  It will help.  Don't do a pacemaker unless you have to.  Doug can help with this, he has one.  

    Spencer

    In the Sunlight

  • Spencer
    Spencer, October 21,  2019  9:49pm EST

    AMurry - Stress will certainly bring on AFib.  I had so much stress in my life, that I created the AFib.  I broke my heart over stress.  You can check mindfulness exercises online.  Some of the online games are also versions of this.   Also, one avenue is meditation.    So your job is to find something to occupy your mind and keep it out of AFib

    Spencer

    In the Sunlight

  • grandscheme
    grandscheme, October 21,  2019  10:35pm EST

    Hi AMurray77!

    Those who posted above have offered two good thoughts related to dealing with afib (and by the way I used to have a highly stressful job and would be in afib for a week while at work before I had an ablation, which eased the frequency and duration and intensity immensely.)

    Yup, the episodes can be distressing. But remember that there are thousands of us out here who understand and go through the same thing.

    Unlike you I waited for years for ablation. I'm considering a second one to try and shake the ____ thing for good. If I'd done it earlier my outcome might have been more thorough. 

    1. Duration: It is absolutely true that your chances for a successful outcome are likely enhanced by this: "I have had paroxysmal a fib since 2018. I had one episode in 2014, and then nothing for 5 years." Your short duration is an asset. Your heart has had less time to start new pathways. Good for you!

    2. Stress: Keep that monkey mind (that's what I call my furtive mind at times) occupied with things that intrigue you or new ventures. Otherwise it will be happy as a clam to obsess over heartbeats (or the unwashed kitchen floor). I know. I've been there. Meditation has been a blessing for me for a couple of decades. A, I can trace many of my episodes to situations or people that were causing me stress the day before or hours before. Find people who love laughing. I swear it's a panacea.  

    Maybe meditate with other people; I have a small meditation group in my home. I also go to the gym every day and do something, even if it's just 20 minutes on the treadmill. The energy I derive from other people adds to my own. Your doc may be able to guide you or recommend someone who can, to the appropriate exercises for you.

    I needed a pacemaker (two years ago) for another issue and I can still feel my paroxysmal afib. So, to the degree that you're able, make friends with the afib, send good thoughts to your heart and remember that you are not alone in this. Wherever you are at any given time of the day when other people are around, you can bet a couple also have afib.

    Best of luck and know many others wish you the best too. 

     

  • depotdoug
    depotdoug, October 21,  2019  11:05pm EST
    01b8b6e26a4522f8dbae4c4d2f40c48055cab9c05f.jpg.

    aamurray77, 

    yep, I'm on #2 pacemaker. My pix on my profile is supposed to be of my 1st ICD/Pacemaker, I've got that one in my left hand right now. Wonder how much battery juice it has left in it. Hopefully 0 Vdc!  I'm become an AVID HR BPM watching 67 year old dude lately especially since re-starting ADHT hormone injections 6 weeks ago. Yes, my MO's(medical oncologists) are attacking my Advanced Prostate Cancer with Lupron hormone injections. That stuff removes a mans Testosterone levels in blood stream. All of it. So with little or no Testosterone in a man's body it 1) creates kind of menopause effect in males. I won't expand on those details. 2) it is supposed to reduce or slow down my energy levels, therefore affecting my E.E.C. excessive exercising compulsion. So far 6 weeks out I've proved that theory wrong.  I have not slowed down exercising yet. Am I trying to prove my MO( medical physicians, clincial experts, cardiac specialists, etc) wrong on Exercising on ADHT Lupron hormone effects. Yeh! You Bet!.  Here is an official photo of my 1st ICD/pacemaker that has lots and lots of exercising and anti-anxiety miles or kilometers recorded on its mini-computer.

    depotdoug

    Doug

     

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