So what next?

Posted , 4 users are following.

I've done five complete stress tests and ultrasound and have confirmed my heart's structure and function are all normal. I don't have any risk factor. All my afib happened when I was sleeping. Just got the 6th episode yesterday, woke up at 4am in afib. Needless to say that was so frustrated and desperate, since I've been doing everything I can - eat well, exercise daily, take supplements: magnesium, L-cartnitine, D-ribose, krill oil, eat bananas and lots of fruits.

I've also tried all triggers that people had ever mentioned but none of them do me any difference, including coffee, red wine and other booze, tea, soda, sweetener, barbecue, Chinese food with MSG, running, jumping, sleeping on left and right side, suddenly bending down or twisting body, gluten, wheat, etc. 

I used to think mine was vagal afib, as it only happened when I was sleeping. But other than that, I didn't have problem bending down, stomach bloating, sleeping on left side or right side. I thought it might be triggered by slow heart rate, as I once noticed my heart rate dropped to about 50 one hour before onset. However, I noticed in the last episode that my heart rate was around 60 all the time before onset. So looks like low heart rate is not the problem either. 

I did notice in my last episode, my O2 level dropped to 85% once about 50 minutes before my heart rate jumped from 57 to 90, then 15 minutes later it climbed to 125. So I guess that was triggered by sleep apnea. However, last night my O2 level was downed to 81% and I had 96 episodes of apnea that dropped O2 more than 4% while there were 20 minutes in total that the O2 level was below 90%, but I didn't have an episode but only some spikes. 

Now I'm totally lost. Because the more I investigate, the more confusion I have. Before the last two episodes, I had gone three months without an episode, then got hit on March 2nd, then another one on March 29th. I used to hope by correcting any abnormalities in my body I can get rid of afib forever, but as more episodes happened, I'm gradually losing hope and feeling desperate. Being 37 years old only, this is worse than a death sentence. 

What can I do next?

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9 Replies

  • Posted

    I have sleep apnea and have been using my cpap machine for 3 years then all of a sudden I went int afib, so they did an ablation . That made it worse, so they gave me a pacemaker. Now I feel great.
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  • Posted

    I was 35 when I first got Af and I’m 38 now - by the sound of it you’ve done incredibly well going through everything and trying to find a route cause of your Af, the only thing I would suggest is that you seem to be all over the Af situation so I would worry that your giving the Af all your attention and spending too much conscious efforts on Af which might be leading to high levels of stress and anxiety - the only thing I can think of that you haven’t mentioned is the psychological side of the issue - try and concentrate your efforts on the mental side of this - basically chill out - go for long/slow relaxing walks - get a good nights sleep and  try some relaxation techniques like meditation and breathing exercises - the mental health side of things is massively overlooked by medical professionals imo - good luck 👍

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    • Posted

      I had an ablation in August 2015 and have been symptom free since then - I do get the odd symptom every month or two and they usually last a day or two but apart from that I’m good - I’ve had a kid just last year, I go walking a lot, I go on holidays and weekends away, I have a few beers when I want, I have the coffee, the burgers and generally live the same life I did before - I just took my Afib as a signal to take care of myself more - everything in moderation - for me the biggest battle was the psychological one - anxiety and depression were very big barriers to overcome and they still sometimes get the better of me but generally life is good.

      My two tips for anyone with Af

      1 - deal with the psycological effects and learn to chill out 

      2 - exercise - it’l reaffirm to your brain that AF is not going to kill you - there’s nothing wrong with your heart it’s just beating irregularly 

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    • Posted

      Steve,

      Thanks for sharing your experience! I totally agree with you on the mental side. Me too found the mental impact is far bigger than the physical that afib brought on. I've been struggling with depression, anxiety, desperate and hopeless feeling everyday every second since the first onset of afib. Needless to say, my quality of life has long gone and I was turned from an active, passionate, creative and full of energy person into a crappy, depressed and near disabled old man. 

      I have young children too, three of them. I used to enjoy going out with them at each weekend, went to water park, theme park, camping in the wild, hiking in national park, doing home projects... just name a few. Now my rusty head is full of this afib crap and really can't enjoy with the kids like before, although I've been trying to act as normal as possible and most of the time I let my logic to guide me to do things and I just force my body to move without too much emotional engagement. This does the job sometimes, as I could still do some of the activities that I used to do with the kids, but to me it's totally different. Most of the time I don't dare to imagine how to live life like this, and I don't look forward to the rest of my life. 

      After sorting out the 'triggers', I think my afib could be a result of the combination of prolonged stress, anxiety, sleep apnea and probably electrolyte imbalances. I had hope for many times that by correcting any abnormalities of my body can cure afib, but as the more episodes I got, I'm gradually losing hope. Maybe I should expect to keep afib away as much as I can, like 10 years, instead for a permanent cure. If I can keep afib to only happen once every 10 years, that's not too bad to have just 4, 5 or 6 more episodes in the rest of my life. Well, but the problem is, as every single afibber knows, even we are not in afib, it's still in our mind and there's no way to get back to the real 'good old' me anymore. This is very frustrated.

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  • Posted

    Okay, here's my story: thirty five years ago I had my first episode. My doctor at the time told me it was "hangover heart", a comment not only diagnostic but pejorative (justifiably so). The episodes were months apart, then weeks, then days then, alas, chronic afib was my lot. I was terrified and took to my bed at first. I was on a first-name basis with all the staff at my cardiologist's office. I took several (I think four) allegedly rhythm restorative drugs, including the deadly amiodarone, to no avail. I had a right-sided ablation procedure. I quit alcohol, caffeine and missing church. Nada. But look - I didn't die. I went from exhaustion from climbing a single flight of stairs (I was a marathon and triathlon participant before) to bicycling vacations every year in various parts of Europe. I still have afib. I take warfarin for anticoagulation, but the statistics are such that the extra strokes would be background noise for a Las Vega oddsmaker. I take the blood thinner simply to prevent my wife, who will ultimately be my caregiver, from complaining about my negligence when I have a stroke. If I do not die or get disabled we will ride our bicycles from Vienna to Budapest this year, which is the year each of us turns eighty years old.

    It is better to have a normal heart, I admit, but in my experience the worst thing about afib is that this foul and loathsome condition captures our minds and impairs our joy. I hope you can learn to treat the situation with contempt and deny atrial fibrillation free rent in your brain. Consider it a resident demon whose power lies in your attention and whose demise attends being ignored. It is extremely likely that afib will not kill you, but it can, if you permit it to, draw your attention from things you love and enjoy. The Rite of Exorcism for this demon is inattention and the living of as normal a life as you can. Good luck.

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    • Posted

      Thanks! This is inspirational. Have you ever got ablation? Did you take daily med in the past 35 years and how do you control it now except for warfarin?
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  • Posted

    I took daily meds of various types for several years. I cannot remember their names, except for amiodarone, none of which worked and when I looked it up I found that amiodarone causes pulmonary hypertension and death in some users. I quit that. Another of my meds caused me to change into atrial flutter which was a regular rhythm but at about 130 bpm all the time. That situation caused my cardio to prescribe a right sided ablation, which stopped the flutter and restarted the afib. Then I quit all but the anticoagulation. I am in afib 100% of the time. Sometimes I am easily fatigued, sometimes not. 

    I suggest the following therapy: lots of dancing and sex. Dancing first works best, usually. 

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