Is there any hope with afib?

Thanks. I’ve read everything I can on the internet, including Dr Mandrola. The more I learn the more hopeless I feel.

Mandrola isn't the definitive source -- no one is -- but I find him a good source. Don't know why you feel hopeless reading Mandrola. He has afib himself, and in addition to a hard working medical schedule, he still races bicycles and has an upbeat attitude. I'll admit that treatment recommendations can be confusing, especially the ablation debate, however it's not hopeless. And you have an advantage that most here don't --- you're young. That means a much greater chance that treatment advances and breakthroughs will take place during your lifetime.

Jim

Oh my goodness that's not good. I would success then to stop using the internet to look up information if all you are finding is negative. Life is what you make of it. Pick yourself up, put two feet in front of you and keep going. Afib is not a death sentence. You will adjust.

 It Dr Mandeila made me feel hopeless but over all the information I get. The long term prognosis is bad, the mental toll is huge, the fact it can’t be cured and I can’t get out of it for life is so frustrated, and I might have messed up by going vegan just drove me crazy. 

What long term prognosis are you referring to? Again, mortality figures are identical between afib and non afib patients. I had my first episode of afib in my 40's. Had 4 more episodes in the next 30 years. I would say it has zero impact on my life between episodes, except perhaps adopting some healthier habits like watching my blood pressure, weight, and stopping smoking. If John Mandrola and others can run marathons and race bicycles with afib, what exactly is it that you don't think you will be able to do? And stop kicking yourself for going vegan. It's not like you were reckless with recreational drugs or something. A lot of good evidence that vegan helps the heart, at least I bought into that. And who knows, maybe going vegan and getting afib were coincidental although I also have my suspicions there.

Jim

Sandi,

Good point. Afib is such a strange condition. On one hand it's very common and usually benign, but on the other it can make lives so stressful. I think the reason is that what causes it can be so elusive.

In my case, I knew the exact trigger (cold beverages and ice cream) for thirty years. Knowing the trigger meant no stress. I just avoided ice cold beverages!

But then my last episode sort of came out of nowhere. I'm only guessing at the triggers. A lot more stress.

In your case, you took matters in your own hands and found success with the FODMAP diet. Hats off to you for being proactive as well as your positive attitude.

I don't know if I will ever be able to find my new afib trigger, but the silver lining is that even though I had relatively healthy habits, I'm now even more focused on good health. Lost a few pounds, watching my diet a bit more, making exercise a more constant part of my life.

But the bottom line is that what worries many of us about afib is less scientific and more emotional. I think time and knowledge is the best cure here.

Jim

Long term, I mean in the next decades. I hope it won’t progress very fast and give me time to raise my kids. There’re people got it progress very fast and in just few years they gone through all meds, ablation, maze and AV ablation. Then what next? I’m so young and there’s a lot of time for it to progress. I doubt if I can get a peace of mind eventually. Feel I’m stuck with this thing for life.

Yes Jim I totally agree. I got fed up with worrying so much and not getting on with my real life that I just decided this self destruction was gonna stop. Period. But it takes awhile to get to that point.

How much time did you get to that point?

Did you take daily meds to control afib throughout the past 30 years?

@li: There’re people got it progress very fast and in just few years they gone through all meds, ablation, maze and AV ablation.

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Afib doesn't necessarily progress with time. Had my first episode at age 40 and my fifth episode at age 71. You will get all the worst case scenarios on the internet, but the average afib patient doesn't go through all you mentioned. Personally, I've never been on a rhythm drug, never had an ablation, Maze or AV.

JIM

I was admitted to ER with new onset AFib on Jan 26, had successful electro cardioversion on Jan 29 and discharged from hospital. I am back to my daily 30 mile bike rides, enjoying my grandson, and thanks to forums like this, have stopped fretting. It didn’t take long for me.

As Jim has counseled, expanding my knowledge base about AFib provides strength, understanding, and positivity to move forward with this condition. And it is a condition rather than a disease, and one that, like Jim, has me focused on risk factor management, like losing weight, watching what I eat, cutting back on stimulants like alcohol and caffeine, and focusing on the positive rather than negative aspects of our common condition.

You are young, have young children to live for, and a long life ahead of you. Accept the challenge that has been presented to you! Losing the doldrums will go a long way in this regard!

This is amazing. How did you control it throughout the years? I already had 4 episodes in the first heee months. My guess is the imbalance triggered the first one, and metoprolol brought on the next three. I notice my heart rate dropped to 40 about one hour before the last episode. Now I don’t take metoprolol and my sleeping heart rate won’t go under 50, I think that’s better.

It is because I have very young children that made me feel anxious and depressed. When I think about I might not be able to do lots of things with them , I feel sad and sorry for them. Like I may not be as active, may not be able to go to camping in the wild, may not go to cruise or long trips etc.

I was lucky in that up until my last episode a few months back, I always knew what my afib trigger was -- iced cold drinks and ice cream. So, all I did was avoid ice cold drinks and ate my ice cream slower. I forgot a few times therefore my four episodes.

My last episode was different in that there was no cold drink or ice cream preceding it. My three guesses are too much coffee that day, some Indian spices I had never cooked with before, and/or a vegan oriented very low fat, low sodium diet. I had also been relatively inactive for awhile.

Since then, I have gone back to a more moderate diet, and gone back to a daily walking and lost a few pounds. I also plan to hold off on coffee for six months to a year and then introduce it slowly. Maybe.

Jim

 

I was on rate control drugs and thinners at the onset of each episode and for some weeks following. But for the 7 or so years (average) between each episode I wasn't on any drugs for afib. My Chad score is 2 which means I arguably could be on thinners but given my history of few and far between episodes, I opted not to go on them.

Jim

How long have you tried the vegan diet?

Interesting. I'm glad that I'm not only one not on thinners

I was on the Caldwell Essenstyn Vegan diet for three months around four or five years ago. No afib issues then. Then I went back on a modified version of it around a month or two before my last afib episode. Besides being mostly vegan, it was also very low fat (under 10% of total calories) and very low sodium. But like I said, while I suspect the diet may have contributed, not really sure. I also had more caffeine that day than usual so that has to be suspected as well. Or maybe a combination of the two. I also was under some stress for a few weeks so that's another factor.

Jim

Did you get your episodes while you’re awake or asleep?

The hospital I go to is very conservative in terms of doing a TEE prior to electro cardioverting. They keep asking are you sure, you went into afib at 5PM yesterday, are you SURE, are you SURE, SURE lol. So eventually I break down and say I'm not 1000% sure of the time so they end up suggesting the TEE and I go along. It's not a big deal procedure and is usually done right before the electro cardioversion so you only go under anesthesia once. Plus you get the TEE which is a better look at your hear that a normal echo. And the other advantage again, is that it doesn't limit you to that 48 hour window so if you want then you can wait a few days to see if you will convert back naturally.

Jim

Can't say about the first episode because it was over 30 years ago and I didn't even know what afib was at the time, but the next three episodes all were while I was awake, literally seconds after downing an ice cold beverage or in one instance ice cream. The last episode, a few months back, I'm not 100% sure about but I'd say pretty sure it happened in the afternoon. That said, the one thing I've learned here and elsewhere, is that afib presents very differently with different people. So my triggers may not be yours, and the way my afib behaves may not be the way yours does.

Jim

The hospital I went to, they didn't really care. I requested TEE but they said it's within 48 hours so TEE is not necessary according to the guideline. I feel they just wanted to follow the guideline regardless the actual situation so that they won't be liable for anything in case something bad happened.

Yes, afib is so different from people to people. I saw somewhere saying it's a condition secondary to lots of causes, instead it's a disease itself.

I get it. It’s an eye-opener and wake up call that forces you to contemplate your mortality. But it is NOT a death sentence.

FWIW, AFib has had zero effect on my physical activities and has had a positive effect on my risk management outlook. When your heart goes wacko it gets your attention and motivates you to make positive changes, eh?

DAMN THE TORPEDOES AND FULL SPEED AHEAD, MATE!

Those are the guidelines BUT if you say you aren't positive when you went into afib, then they would be obligated to do a TEE. Personally, unless I was completely sure of the time, I'd want one. I've had four electro cardioversions and five TEEs. The reason I've had more TEEs than cardioversions is that one time I naturally converted after the TEE and before the cardioversion. In most cases they are scheduled at the same time but in this instance the cardioversion was delayed so they wheeled me back to my hospital room to wait. My guess is that the procedure itself and/or the anathesia, stimulated my vegal nerve and brought me back into normal rhythm.

Jim

Have you had your potassium level checked with a blood test? I believe that high potassium leads to arrhythmias. Potassium and salt have an opposite effect. I was recently diagnosed with high potassium and had to increase my salt intake as part of a program to reduce my potassium. 

Just a thought, I'm not medically trained so check for yourself. 

I mention it because you said your diet was very low in salt.

PS. I've had severe AFib for a long time, 27 years so far, and I'm still here and living a normal life thanks to a good EP, 2 ablations and the right drugs.

Sorry about 3 posts in a row, should think before I press the button  

I believe my electrolytes were normal but I will double check. In any event, I'm off the very low sodium diet and to my surprise my blood pressure hasn't gone up, as it usually does. The only thing I can think of is that I also stopped drinking coffee and lost a few pounds.

Jim