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alternatives to ablation or maze.

Bambi65 profile image
48 Replies

over 4 years with AF, meds did not work, and havent been on anything for 3 years. Have just started blood thinners only because of a possibility of a stroke. Now, since I have 10-15 episodes per month, lasting 4-28 hours, hr from 140-190 each time. Trying to find alternatives to ablation and/maze. Ive read and read all the medical stuff on AF, and if appears to me nothing has really changed in the since it began in the late 1960's with the exception of accuracy, methods, and equipment used. And the risk of all this just isn't appealing, not to mention repetitive ablations without a permanent success. And yes Ive hear that once you have Afib, you always have Afib. Not a pleasant thought.

All of this IS to treat the symptoms, but find not the cause and correct that. I just havent been able to find any causes, just treatments. Has anyone had success with alternative treatments and what the outcomes were? I know Im reaching out here and its a stretch, but hopeful that someone before has thought the same thing, and done something about it.

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BobD profile image
BobDVolunteer

Life style is important in reducing AF burden but you are right in saying that nobody knows what causes it. We know what it is and how to treat the symptoms but the unanswered question is why does it happen?

Weight, diet and of course alcohol all play a part in bringing it on and can all be altered with benefit. Less meat, lower BMI (less than 25) lower blood pressure, reduced stress etc all help and there is enough data out there to encourage people to follow the life changes but there are still vegan racing snakes out there with AF.

Bambi65 profile image
Bambi65 in reply toBobD

I have never had H BP, body builder until this crap started, only stressed with this crap and the surgeons that want to treat the symptoms, and only may eat red meat (and I stress maybe) 1x a month. Had a great diet of fish, green leafy vegies, very very low carbs, no soda's, no candy, or other garbage, and lots of water. None of this makes sense to me!

BobD profile image
BobDVolunteer in reply toBambi65

That might be why for you then? We know that endurance athletes and fast jet pilots are more prone to AF due to the strain they put on their hearts. Maybe add body building to that list.

Bambi65 profile image
Bambi65 in reply toBobD

Thanks Bob. Appreciate the input..

I do/did fly airplanes, but not jets.... lol My body building was not for muscle mass or competition but for health and fitness. I just wanted to stay in shape and keep my weight and BF in a good range. Right now Im looking towards Chinese Medicine (herbs), acupuncture, and cleaning up/leaning up my diet. The weight gain over the last 2 years is a huge challenge for me, as I have such a limited activity level trying to keep the Afib monster in its cage. It keeps wanting to get out and take over.

FancyPants54 profile image
FancyPants54 in reply toBambi65

I first got Afib when I was young, fit and slim. I am now in it continuously since March this year and I'm now fat due to thyroid problems and menopause. No difference. I don't believe weight changes much at all.

You didn't boost your T3 for body building did you? If so, get your thyroid checked now, a full panel including free T3 and free T4 and make sure neither is too close to the top of the range.

Bambi65 profile image
Bambi65 in reply toFancyPants54

My body building time was not intense by any means. Didnt do any type of supplements or additives, just very clean eating. I recently had a full panel of the T's done, one was right in the middle range and the other towards the low end. The extra weight im carrying around with me is felt with every step I take. Ive never been this big before and I am steadily working at getting it off.

Thanks for your reply.

FancyPants54 profile image
FancyPants54 in reply toBambi65

It's important to understand which T number was low. T4 is a storage hormone. If it gets too high it can cause problems. But the really important number is T3, if your free T3 is on the low side your metabolism isn't running properly, you don't have enough energy, and your Afib is just as likely caused by too little T3 as it is too much T3. You suffer from Afib if you exercise by the sound of it. If you exercise with too low a T3 number in your blood you will run out of energy very quickly and things will go wrong.

You said you ate a low carb diet too. That is not a good diet for anyone with low thyroid hormones. Whilst I don't suggest you need to eat a high carb diet, being low can cause issues. I didn't know I was hypothyroid when I went on a low carb diet to reduce weight a number of years ago. I felt so ill really quickly on that diet and sadly I have not recovered since reverting to a normal diet. It threw my thyroid into a bad state that won't respond properly now to medication for it.

Also, your storage iron (Ferritin) is vital to good health. You need to know what that is. It should be over 70. If it's low your conversion of T4 to T3 will be reduced. You don't eat enough red meat to keep your iron stores up so I really recommend you look at that. I love and eat meat all the time. But I still struggle to get my Ferritin up to the right level. Supplements don't really help me much at all. I have to eat blood foods like black pudding and pate (should be liver but I hate liver) every week to even stand a chance of raising my levels.

Bambi65 profile image
Bambi65 in reply toFancyPants54

My t4 is right in the middle 1.09 (0.58-1.64)

T3 on the lower end 2.9 (2.4-6.8)

and I also take Iron supplements, just in case

FancyPants54 profile image
FancyPants54 in reply toBambi65

Those results are low. Especially the T3. That is too low. What was your TSH result with these numbers?

Mpricelpc profile image
Mpricelpc in reply toBambi65

Recent research showed low carb diet linked to heart problems.

Bambi65 profile image
Bambi65 in reply toMpricelpc

it seems that everything is linked or a contributor to heart problems... No escape... LOL

Franny50 profile image
Franny50 in reply toMpricelpc

The only way I can lose weight at almost 70 and zero metabolism is fasting and/or low carb diet. But now it seems that even that is out the window. Now I'm eating more carbs and putting on weight. You can't seem to win with AF.

Bambi65 profile image
Bambi65 in reply toFranny50

I know this sucks! Ive changed how I eat, the amount, and keeping it lean without sugars. The best Ive been able to do so far is maintain. Loosing is right at the impossible limit. the calories in do not equal the weight im putting on. Exorcise is so limited now and Im sure that is a huge component of this. Im still going to cut down even more on the calories. There has to be a middle ground here somewhere. I know my body has always had problems with carbs. They just dont process like they do in other people, so Ive had to limit what kind, and how much carbs I put in my mouth.

I agree with you the Afib, and weight control is a constant battle, one that I am not going to surrender too.

Hang in there Fran, there is only 5 years between us,!

CDreamer profile image
CDreamer

Over training ie too much exercise ie body building will be a stressor. Stress = inflammation = AF for some. Could be you are not giving your body enough recovery time. So many conditions are caused by inflammation. Eliminate the inflammation and it can really help. To do that you need to know your inflammation markers and track them. Know what triggers your inflammation and avoid - mine are gluten and dairy, particularly dairy. I use herbal supplementation to reduce inflammation and nutritional supplements to help heart cell metabolism - COQ10, L-Cartnine, D-Ribose and if you can take it, I can’t, Magnesium. All these supplements support the Mitrochondria and are thought to be beneficial for the heart.

Definately worth researching Cardiac Metabolism, very early days and a good starting point is Dr Sinatra heartmdinstitute.com/heart-...

I’m not saying it will work - just it seems to be an area that is opening up and being researched and many people find it beneficial.

Bambi65 profile image
Bambi65 in reply toCDreamer

I did read a previous link here to his site. So very interesting.. Ive bookmarked it and will use it for reference. Thanks for you reply also

in reply toBambi65

What is the recommendation of your EP? It may be a mistaken impression on my part, but it sounds like you have not been given a clear plan of action.

Getting rid of excess weight would be one way you *might* reduce the AF burden; studies show that excess weight with even moderate alcohol use are key predictors of progression from PAF to persistent or permanent AF. Walking, cycling, swimming etc. are the recommended forms of exercise. However, an ablation is probably still going to be required.

Bambi65 profile image
Bambi65 in reply to

They have give their plan... several times. The outlook is not that promising, and once it is done it can not be undone. Risks associated with this are high. I do bike and swim slowly and walk, all of which do sometimes sets the monster loose. I can often push through it, unless it start hurting and I struggle to catch breath. Usually in the 150-190 range. Work In progress.

KMRobbo profile image
KMRobbo

Are you in permanent

AF or paroxysmal?

What's wrong with an ablation? You sound as if you are very fit and without other comorbidities.

Bambi65 profile image
Bambi65 in reply toKMRobbo

Not permanent, but due to lack of the activity level and stamina I have gained weight, more than I want or accustomed to. Gentle bike riding or even walking will "sometimes" set the monster loose.

The other item is I have RA. Which came on about a year b4 the AF.

Bambi65 profile image
Bambi65

No, the damage done to the heart with this, can not be undone. Besides, it dosent always work. No thanks, I'll keep looking.

in reply toBambi65

I am due to be assessed for an ablation at the end of the month. I cannot say I relish the prospect , but the risks have to be set against the consequences of *not* having one. Unfortunately, ablation is pretty much the only game in town for AF. I get PAF on average once a month, but a consultant told me that’s still too often and could get worse over time; it’s a progressive condition and it remoulds the heart once it gets going. From what you’ve said, my impression is that you don’t have a good relationship with your EP. I don’t know how the US system works, but it sounds like you need to find an EP who you have more confidence in and can discuss your- entirely reasonable- concerns with.

Bambi65 profile image
Bambi65 in reply to

Ive had 2 EP's, both saying the same thing. ablation is the way to go. For the "first time" then for the "2nd one" they recommend another type where they put three holes between my ribs on my side, collapse my lung to get access to my heart, then burn/freeze the key areas, clamp off the appendage where the blood clots are formed, then inflate my lung and repeat on the other side..... I would be in ICU for a few days etc.....ah No, thats not for me....

Well... what else would I expect to hear from a surgeon?

Jjda profile image
Jjda in reply toBambi65

I have never heard of the second procedure you reference. I would definitely be wary of that one. The problem with continued, long term Afib is that it can also damage the heart. If you are having episodes as frequently as you describe, with pain and being short of breath with moderate exercise, I would reconsider the ablation, but if you are determined not to go that way, I wonder if a Naturopathic Doctor, or a really good nutritionist could help with some dietary or lifestyle changes. Best of Luck and if you find something that works, please let the rest of us know!

Bambi65 profile image
Bambi65 in reply toJjda

thats the route Im on at this time, Naturopathic Doctor

Bambi65 profile image
Bambi65 in reply toJjda

Where in Florida are you? Im just outside of downtown Orlando. So far the treatment Im on is working extremely well.Today is day 7!

Jjda profile image
Jjda in reply toBambi65

I am in Tallahassee. (Florida with a Southern Accent), but am originally from central coastal FL. What treatment are you taking?

Bambi65 profile image
Bambi65 in reply toJjda

acupuncture, herbs: mothers wort, devils claw root, liver cleanser, and just started Gui Pi Pian 5x concentrated (consisting of 12 chinese herbs).

The proceedure that was suggested by a thorasic surgeon, and he is one of the very few in Florida do this "Mini-Maze".

Success rates of these newer Mini-Maze procedures in excess of 80% have been observed. As with catheter-based interventions, patients with recent onset paroxysmal (i.e., episodic) atrial fibrillation enjoy greater success rates than patients with longstanding continuous atrial fibrillation.

Often, the left atrial appendage is also removed during these procedures, since it is widely believed that this is where blood clots tend to form in patients suffering from atrial fibrillation. Removing this source of clots is intended to significantly reduce the risk of stroke and, in many cases, reduce or eliminate the need for long term coumadin anticoagulant therapy.

Most Mini-Maze operations take three to four hours and are generally performed on the beating heart without the use of the heart lung machine. The minimally-invasive approaches used usually result in a relatively short postoperative hospital stay averaging three to four days. Since it often takes several months for the procedure to take full effect, patients are generally placed on a short course of anti- arrhythmic drugs (e.g., amiodarone, beta blocker) and coumadin. Most patients are able to resume normal activities, including work, by about two to four weeks after surgery. from: hopkinsmedicine.org/heart_v...

Beta44 profile image
Beta44 in reply toBambi65

Four years ago from tomorrow I was exactly in your situation. Then on 7 July I had an ablation. From that day my life changed completely and I have had four years totally free of AF and have been leading a normal life. I am hoping for many more years before AF returns again. While some may say that I am not cured, so far as I am concerned, I am, although I still have to take anticoagulants. The risks as I understand it are slight and those that are not very rare indeed. Should the need arise I would not hesitate to have another ablation.

Peter

Bambi65 profile image
Bambi65 in reply toBeta44

before your treatment last year, how often were you having af and how long were they lasting? Just curious

Beta44 profile image
Beta44 in reply toBambi65

I was having episodes once or twice a week and they were getting longer and harder to convert.

Bambi65 profile image
Bambi65 in reply toBeta44

Mine are so sporadic, without rhyme or reason it seems. I guess if I knew for sure that I would have results like yours, without any complications I might be more interested. I feel like Ive got to try other options before considering this. Thanks for the Possibility.

KMRobbo profile image
KMRobbo

The dilemma is also that damage done to the heart by AFIB cannot currently be undone either, and "AFIB begets AFIB" - the more you have it, the more you will have it.

Having a ablation stops(?) or a least delays the progression of the AFIB. Originally I was not going to have an ablation but over 20 months it got more frequent until after 20 months it was very difficult to get back to NSR and I spent best part of 8 days 135 to 195 resting and was eventually cardioverted in the hospital CCU by flecainide infusion. Then i had to take flecainide twice a day and diltiazem 200mg to stop the flecainide promoting a high rate. The diltiazem had lots of unwanted side effects tiredness, brain fog, poor memory , breathlessness no excercise tolerance (max HR 137 and painful at that) couldn't really run more a shuffle. . QAL seriously impaired . At that point I decided I needed the ablation. I had the ablation 28 Jan 2018 , off all drugs may 15 2018 back running , mountain walking cycling straight away drug side effects gone.

I had a PVI CRYO ablation. That freezes a scar in each of the mouths of the pulmonary veins ( there is an anatomical name for this area but can't remember it). Not really inside the heart as such But stops the rougue signals going to the atria.

Unfortunately I also had to have an ablation in the right atria for reentrant Atrial flutter which developed after the afib ablation probably caused by the flecainide required to contain the afib. So that has burned a very small part of the right atria but again It is a consequence of having the afib. No flutter or A fib since. Normal life

Bambi65 profile image
Bambi65 in reply toKMRobbo

From what I have read here, you are an exception to the process. It seems that everyone has the first one, then a second, etc. or most have complications like bleeds, nerve damage, continuing afib sometimes even more often, and sometimes less often. And after going through all that, not having the results? Jeeze, most people here are having in excess of 3 ablations. Well if it didnt work the first time, then why put the body through it again for the same results. If any, and I mean ANY of the docs told me that I would have even a 90% success rate, (stop the afib and no meds) on the first I may consider it. But Im not getting anything near that.

Beta44 profile image
Beta44 in reply toBambi65

Professional Shilling at Bart’s has his results audited. He has a first time success rate for paroxysmal atrial fibrillation of around 80% or 90% after a touch up procedure.

Bambi65 profile image
Bambi65 in reply toBeta44

who or what is Professional Shilling at Bart’s ?

Beta44 profile image
Beta44 in reply toBambi65

Sorry that’s Siri it should be Professor Shilling and he is at St Bart’s hospital in London. You will fin the results on the internet.

Bambi65 profile image
Bambi65 in reply toBeta44

Ok thank you. We are in th U.S. Orlando, Florida

Beta44 profile image
Beta44 in reply toBambi65

Sorry, I didn’t realize. I know that the United States is a very different matter, so far as medical care is concerned, because there are potentially such huge costs involved, particularly if there are complications.

Gopheby profile image
Gopheby

My Doctors are saying that my Low thyroid levels are possible causing my AFib. I’ve had AFib since 2013 and on meds ever since. Also had a cardioversion. It did not take. Now I’m scheduled to have an ablation in about two weeks. HR went up to 136 yesterday. BP drops real low.

I am a little concerned about this upcoming ablation!!!!

Bambi65 profile image
Bambi65 in reply toGopheby

thanks for your reply. If I could get mine as low as yours, Id feel so much better..... good luck with your procedure.

Hi Bambi65, I've written various posts over the past few months on my investigations on underlying health issues that might trigger AF and the solutions I've found. You might want to check them out. I also just shared about the FIRM ablation, which the new EP I consulted with suggests as an interesting option for me. The difference with that technique is that they look in places for the originators of the erratic impulses that regular ablations don't consider.

What I have found most helpful:

Dr. Sinatra's "Metabolic Cardiology" book & taking the micronutrients he suggests to nourish the heart. I have definitely felt a difference overall and my heart does feel stronger.

Acupuncture.

Consulting with a naturopath: I've written elsewhere, but in brief, he gave me valuable advice I've followed which has me feeling infinitely better.

Eating a clean diet, which for me means no dairy, gluten, sugar, caffeine, alcohol. Organic food, plenty of ginger & turmeric. Still able to eat delicious meals in spite of not being able to eat those basics. Generally avoiding foods that cause inflammation.

I've been gradually adjusting my lifestyle with the goal of bringing things into balance, clearing up underlying health issues cause how can that now help my heart?

Most importantly, with less reliance on the drugs and the powerful help of the supplements I've been prescribed and acupuncture, I can *think clearly* again (!!). Being so fuzzy-headed, dragged down, depressed, etc., for me was the worst aspect of intense AF episodes and the dreadful side effects of the drugs.

The difference is night and day to how I feel now.

Now if a have an episode, it is far less intense, shorter, and easier for me to continue functioning, think clearly, feel emotionally balanced, and carry on with my day or sleep through the night.

I'll keep doing what I've been doing, along with investigating this new FIRM ablation option and see what unfolds.

As brilliant and experienced as cardios and EPs can be, I'm convinced that it's far more effective to also consult with a naturopath or functional med doc to get a bigger picture.

The cardios/EPs would never even look into the things I've learned that have made the most difference in my overall sense of well-being and ability to function day-to-day. It's just not in their training.

Hope that helps.

Bambi65 profile image
Bambi65 in reply to

very helpful. started acupuncture yesterday, and also read all info I could get my eyes on Dr. Sinatra's "Metabolic Cardiology" and have incorporated that also. Found an apothecary yesterday in downtown Orlando that carries all kinds of herbs. Ive not heard of FIRM ablation but will ask Dr. Google about it today. Thanks for the info

in reply toBambi65

Glad you found it helpful. I’ve written a bunch in various posts that you can look up. You might find it helpful, too.

I encourage you to see if you can find a good naturopath in your area and have a consult. Mine did extensive testing and each suggestion has helped.

Also, be careful to look for high quality supplements and don’t do too much all at once. That can overwhelm the body.

I think AF is letting us know we need to slow down, pay attention, really tend to self-care in a gentle, disciplined way.

Best wishes to you.

Bambi65 profile image
Bambi65 in reply to

In total agreement with you. Have found one yesterday, have a couple of things to add to my daily routine. Fingers crossed.

You might want to try the following. It's free and has no risk factors like meds do.

----------------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt??

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

Bambi65 profile image
Bambi65 in reply to

very good info.... will be mindful of this. Thank you

KMRobbo profile image
KMRobbo

I do not think I am one of the few who has a success. As Bob D says most of the sucesses stop being on the forum as they have no need to be on it anymore. My EP claims 65 to 70% success first anlation .however you have to realise a lot of people are old , unfit unhealthy with co morbitities. I am not medically trained but I suspect those people are the ones who keep the overall score lower , by what % I cannot guess. Furthermore if you have a QAL made worse by the condition , with the likelihood it will be getting worse 65% is a good bet particularly if you have a good EP and you are fit and healthy.

EngMac profile image
EngMac

I did not read all the replies. I am pretty sure back issues are one of the causes of AF. Not many people agree. You may wish to see if a chiropractor can find any back issues. Also as we age, we are less efficient at producing collagen. Collagen supplements may help. I have other suggestions but I have not time to mention them now. You can message me and when I get time I will respond.

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