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AF Association
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New to this forum, but not to AF

Hello everyone,

I live in the San Francisco Bay Area in California. I was first diagnosed with AF in 2013, had a cardioversion and then an ablation at the end of 2013 that kept me in NSR till spring of 2017, when episodes started again. I had a second ablation with a different EP and practice in Dec. 2017. 8 months later, I'm still having some episodes, but I think I have recently turned a corner after weaning myself off of Toprol, which I was taking to control my heart rate. I feel so much better after doing this! I'm convinced that it was making the episodes worse. I've read that this is not unusual in cases of Vagal AF.

I also work with a wonderful doctor of Integrative Medicine who is an acupuncturist. I've had weekly treatments for almost 2 years now and take herbal formulations that keep my whole system strong.

I would love to be able to heal my heart without having to have a 3rd ablation, but am taking it a step at a time. I'm doing my best to take the best of allopathic and Chinese medicine approaches to AF. A lot of that means trying to avoid overpowering medications as much as possible. So far, so good. My new EP listens to me and has been supportive of my integrative approach; some aren't at all.

My experience has been that it's really important to find docs who are highly skilled, but who also really listen and are open-minded.

It's nice to join you here. I'm wondering if most people here are from the UK, since that's where the site seems to be based.

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Hello Nella and welcome to the forum. The majority of members are from the UK, but as we all know, AF knows no boundaries, therefore you will find many from the States, a good few from Australia and New Zealand and some Europeans too, so all very cosmopolitan!

It sounds as though you have had an interesting AF journey, similar to many on the forum and it is good that you seem to be in control of your treatment programme. I’m sure you will have some interesting discussions with like minded folk here on the forum.......

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Thank you for the welcome, Flapjack! Dealing with AF has certainly been a learning process. I have embraced taking charge of that process wholeheartedly in recent months and have been looking for others with a similar approach. I'm happy to have discovered this forum.

With many members of the forum being from the UK, it would be interesting to discuss the impacts of our very different health care systems on the process of getting treatment, ablations in particular. For my first one in 2013, my insurer refused to pay, leaving me with $147,000 in medical bills. Only in America! :-)

I fought them and eventually won, which meant they had to pay. I'm guessing one wouldn't face that particular kind of challenge in Europe.

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Hi and welcome - you know your journey almost exactly mirrors mine. Ablation 2013 & 2014, AF returned 2017 & I’m also working with Functional/Intagrative Medicine. I take no meds other than anticoagulant & feel much better! I have been gluten free for several years now & work with FM doctors locally & am much better for doing so.

Hope you find the forum useful - I think it’s great. There are plenty of members in the US, Canada, Australia, Japan + rest of world. Really good supportive, knowledgeable bunch.

Best wishes

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Thanks, CDreamer. Wow, that is amazing! I've never met anyone else whose experience mirrors mine like that.

I've been gluten-free for years, too, and have systematically cut out other foods that I'm sensitive to. Learning about FODMAPs has helped a lot. healthline.com/nutrition/fo...

The only medication I take now is Flecainide for PIP, which does shorten the episodes. I'm optimistic about impact of getting off of Toprol; some of the herbs I take to nurture and strengthen my heart weren't able to be as effective with Toprol in there.

My cardio & EP put me on aspirin for anticoagulation and some of the herbs have blood-thinning properties. I took Xarelto for a while before and after my 2nd ablation, but it was so overpowering that I ended up having more episodes.

I've made lots of changes to my lifestyle, too. An entire reconstruction of my life, really.

Do you still have episodes?

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One of the big differences between UK and US is that EPs here wouldn’t prescribe asprin -which is an anti platelet not an anticoagulant - for lone AF. I notice in US it seems to be more common but many European trials show the risk of stomach bleeds from daily asprin exceed any benefit and that asprin doesn’t protect against the sorts of clots that form after AF.

You may find this of interest.

academic.oup.com/eurheartj/...

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Interesting article, and thank you for the respectful way of sharing it with me. I shared in another reply that at another forum, someone was quite aggressively asking me why I'm taking aspirin, with a clear insinuation that I must be an idiot.

For background, I was on Warfarin (Coumadin) throughout the first year or so till it became clear that the first ablation was successful. When I was having episodes again in 2016, I explored the options for anticoagulation. This area is where there is major disagreement between Western medicine approaches and Chinese medicine.

Of course, I wanted to be safe and not have a stroke. My new cardio put me on Xarelto, which I hated. I had hallucinations and other discomfort, with the exhaustion factor from frequent insomnia triggering more episodes.

My acup. regularly consults with a doctor of pharmacology who's also an expert in herbology. He suggested I try nattokinase, a natural anticoagulant which, being natural, hasn't been tested or approved by the FDA, and won't be anytime soon. Even mentioning nattokinase in one American AF forum at the time to see if anyone used it brought on the wrath of the moderator.

I stayed on Xarelto for a few months in preparation for the ablation and discussed my concerns with my EP prior to the procedure. 3 weeks after the ablation, I was having the awful side effects again so he let me switch to aspirin.

Just the other day I asked my acup about the anticoagulant effects of aspirin, after the awful experience I had at the other AF forum and he tells me that, yes, it does serve as an anticoagulant from the Chinese medicine point of view. Some of the herbs he's giving me also work as anticoagulants and he carefully monitors my stomach and other organ systems.

I'll discuss the situation with my EP next month. From the beginning, it's been challenging to balance wanting to be safe with not getting clobbered and poisoned by overpowering medications. The disagreements in the American medical and AF communities don't help, especially as aggressive as they can be.

Thanks for the info.

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It’s very confusing and contradictory isn’t it? I hate taking any meds and investigated none pharmaceutical methods and looked at nattokinase but without the help of an experienced practitioner I wasn’t going to experiment on my own. I have now found 2 NHS doctors who both have studied FM and take a very pragmatic view - food before drugs if at pheasiboe but even they balk at no anticoagulation. I am lucky as I have had no side effects from Apixaban so I am happy to stick with it for the time being at least. I did come off all anticoagulation 12 months after ablation with EP’s blessing but then AF returned and I couldn’t get back on quick enough.

I have to say I joined several US forums for Mg because on the whole I found them more knowledgeable but didn’t last long as they were either abusive, constantly moaning or just downright dismissive.

I hope this forum stays as is, we have had the odd contra tarre but the offenders either didn’t get a response or were banned. There is an ability to report if you press on the ‘more’ button below your post and if you wrote the post then you can also delete.

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Yes I still have episodes - I don’t take any anything other than anticoagulants - Apixaban or you may know it as Eliquis. We tend to use the generic names rather than the branded name. I have taken Flec first as a PiP and then daily but it ceased to work for me and exacerbated an underlying neuro-muscular condition. I now cannot take any rate or rythm drug as it exacerbates the Myasthenia, which is a more serious condition.

I am currently on the waiting list for a Pace & Ablate Which I have dithered about for 18 months and of course since I said yes - I’ve hardly had an episode at all so now I’m dithering again. But - I know come autumn and winter and accompanying infections I will be a lot worse as I am on strong immune suppressants so pick up everything and as soon as I do - wham - AF kicks off. For most people a cold is not an issue but for me it usually means 3 weeks incapacity as everything kicks in at once.

I had Pneumonia in the spring and AF more or less every day which made life a misery but of course as soon as I am well and fit and full of energy - I think ‘do I really want to put myself through this?’

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Oh my, that sounds so challenging to deal with! Though my first ablation stopped the AF episodes, it wasn't till I connected with my acupuncturist in 2016 that I realized how damaging the experience had been to my immune system, so I can definitely relate to those challenges. I'd been getting sick a lot and my Acup. took one look at my blood work and was very concerned, much more than my PCP (do you use that? Primary Care Physician- maybe you use GP instead?) had been. He set about boosting my immune system with herbs and acupuncture. Slowly, over time, I have become much stronger. There's an amazing Herbal Anti-viral and another that works on the lungs; they go in and gobble up the virus before they set in. I haven't been sick since starting with him. If you ever wanted to explore this approach, I'd be happy to send along the names of the herb blends, which must be prescribed by a practitioner. I want to be clear that I'm not giving advice, but sharing my experience. I'm sensitive to that. Though I don't have your specific condition, I understand how difficult it can be to have to deal with catching a cold and being flattened by everything getting triggered.

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Your guy sounds great! I have seen a Herbalist who has suggested the odd thing which has helped to reduce inflammation - the underlying cause of most disease. The FM doctors - one is a GP at our local clinic which is outstanding I have to say and the other a consultant rheumatologist who has realised the long term effects of the drugs she was taught to prescribe and now does everything she can to avoid prescribing. In addition I see a chiropractor regularly and find regular massage and fascia release very helpful. Actually at the moment I feel well and better than I have for some years but that is only the last 10 weeks or so!

Our doctors are very into gut health and we are presently very into fermented foods and healthy eating.

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Hi Nella423 and welcome. I’m in Western Australia (although born in England). I too find it interesting to hear about the different medical systems, approaches and costs. I’m sure you’ll find lots of useful information and support here.

Kaz

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Thank you, Kaz747, for your note of welcome. It's nice to meet such kind people here who understand what it's like to have AF. I really like that there's an emphasis on support as well as information. Lately I've craved simple kindness and understanding, so this is lovely.

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Hi Nella and welcome to the forum. We are a diverse bunch here from all continents and together have every permutation of AF and its associated arrhythmias. Someone will always be able to help and offer advice or share the same symptom load.

When I was first diagnosed I had never heard of AF and knew no one who had it, so this forum is a relief and a great benefit to all of us. You will certainly find kindness and understanding here.

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Thank you, Finvola. What a lovely welcome here! It's a humorous contrast to a recent adventure I had with an American AF forum, only the second one I had ventured into. I had shared a post similar to my intro post here. I could see that well over 100 people had read it, but not one person responded with a word of welcome. I found that a bit odd. I posted a question about Vagal AF and shared a bit of my situation and was met with such aggression and nastiness that it made my head spin! "What are you doing taking that medication??!!" "I have a Ph.d and have had AF for 20 yrs and so I know blah blah blah about your situation..." "I don't believe Xarelto caused AF!!" "Being on this forum is like walking in a park...you wouldn't just walk up to someone and say hello in a park, would you??!" And on and on. After I shared that this was really a rather aggressive "welcome" for a total stranger, then others piled on with how I just didn't understand how "helpful" these people were being...after I'd already said that I'd be the one to decide what was and wasn't helpful, thank you very much. I felt mobbed and left. For this reason, I am especially grateful for the lovely, kind, gentle welcomes from the members of this group! Thank you.

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Oh my! My first thought on reading that was how brave you were to try this forum!!! No nastiness here - everyone has their own shade of problem to cope with and is helpful where possible. Enjoy.

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I left a facebook AF forum for similar reasons, probably same one. It was like a clique, and if you were not interested in an ablation, it was like being shunned!!! I have found the people here open, warm and welcoming. They are very knowledgable and willing to speak their minds in disagreement, but not in a condescending judgemental way. I love that we are from different countries and cultures. I live in Missouri in a rural area. Every now and then I find myself using a british saying that Ive learned here, lol. This group of lovely people feel like family. You can relax and be yourself💜

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Thanks, Hoski! It wasn't a Facebook group, but there was enough of a bullying, cult-like feeling for me to move on. It wasn't just that you should have an ablation, or several, but that, as one guy told a new person, "Just get on a plane and go to Texas!" to have an ablation with Dr. Natale. He's known as the "rock star" ablationist in the AF world and many of the posters seemed to have worked with him.

With the different approaches & medications, it struck me as odd that these folks were acting as self-appointed AF police, literally telling people what to do!

They became so angry when I told them that, yes, I was on Xarelto for only 3 weeks after my ablation, then aspirin ever since, and no, I haven't had a stroke. After discussing it all at length with 4 different doctors. Sorry guys! I'm actually not an idiot!

Now, safely away from that and with the discovery of you lovely folks, I find it all to be ridiculously humorous.

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Hello! There are a lot of us here from the UK but also worldwide too.Lots of great support and sharing of experiences.Welcome!

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Thanks, wilsond! I appreciate your words of welcome very much.

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Hi Nella,

Welcome.... and you came to the right A-Fib discussion group. People here have such a wide array of experiences and acquired knowledge to share. I was diagnosed in April of this year with Para A-Fib. Only had it twice but used to get more flutters before medication. I take an anticoagulant and a rate channel blocker. Ugh.

I am so curious as to what you have identified as your triggers that caused or bring on A-Fib. Mine was brought on at first by a very stringent diet I was on and the second episode was brought on by temporary medication the doctor gave me for seasonal allergy issue (steroid).

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Thank you for your kind welcome, Aprilbday! Oh my, steroids! I had an awful reaction and AF episode recently from a steroid cream prescribed by my dermatologist. I so regretted not asking my acupuncturist about the med before taking it. When I checked with him, he told me that steroids can raise HR and trigger AF. They are really so powerful.

I've gone through phases with identifying triggers. Initially, it was partly emotional and physical stress from the sickness and death of my beloved kitty near the anniversary of my mother's death. My teaching job was stressful, in a toxic work environment. I have changed all that to teaching in a lovely little college and starting my own business so I can teach via video from the comfort of my home, accompanied by my new kitty (who seems to be the reincarnation of the beloved kitty who died; looks exactly like her & came to me rather magically with quite a similar name).

I've needed to move away from some relationships with people who showed a rather aggressive side at times that would trigger episodes. This included leaving my first EP's practice to find a new one with lovely, kind, gentle staff. I've needed to avoid watching the news, especially when a certain president is speaking. He is determined to destroy the health insurance changes that his predecessor put in place that literally saved me and many others from ruin. It takes strength to not become anxious about the threats to my insurance coverage.

I've changed my diet, spend time in nature as often as possible, and am generally very careful not to overdo it physically, even when I'm feeling really good. I don't have an episode when exercising, but may have one when I go to bed. That's the sign of overdoing it. I also discovered that EMFs from my computer, smartphone and WiFi seemed to be affecting me, so I got a laptop shield that has helped a lot (www.defendershield.com) and made changes to my phone and WiFi usage, too.

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Hi Nella - I live in Oregon, near Eugene. I joined this group about 6 months ago and it has been really helpful for me. I've had A-fib since 2010 but I didn't know until 2014 because no one told me! Right now, I'm in persistent A-fib and we'have a cardioversion in a month. From 2014 until now, I was able to manage my afib by taking a magnesium supplement. But in April, I had a biopsy and I think the lidocaine that was used, which contains epinephrine, cause me to go into this persistent A-fib. It really doesn't bother me, except that my legs are swollen much of the time now. I'm looking forward to the cardioversion and hoping it will work. Linda

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Thanks, Linda! I hope your cardioversion goes well. I had one about a month after I was diagnosed, but the nice effects only lasted 2 weeks. I hope yours lasts longer than mine!

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