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Something I've learned on my journey re: "dismissal by docs"

ChasMartin profile image
53 Replies

We can tell the arrhythmia specialists all day about our triggers. They hear it all the time.

It does not change the treatments they have to offer us. If we are coming to arrhythmia specialists because of our arrhythmia burden, they have just a handful of things to offer us. Ablation and its counterparts, or medications. That's it. That is what causes us to feel dismissed.

I've come to realize that sometimes we go to doctors expecting them to have all the answers, expecting them to take responsibility as the expert. Yet when they tell us the extent of what they can do for us, and leave it up to us to choose what path we want to take, we get angry that they aren't helping us with our portion of the responsibility.

Let me explain further.

I have spent the last 3 years in and out of doctor's offices, and doing hundreds of hours of research on my own. Early on when I was offered an ablation I was angry, I thought, why not focus on my triggers and treat it from there. Then I realized that was up to me, not the arrhythmia docs. So I went on a long journey, one that took me through many different things, and many different specialists. Gastroenterologists, endocrinologists, nutritionists, naturopaths, acupuncture, and on and on. I did a plethora of things on my own, trying various supplements, exercise, lost weight, eliminated alcohol and caffeine, various diets, probiotics... While I had some success with various things, in various ways, my arrhythmias have come back again and again to knock me on my butt and say they're still here.

Maybe for some people these various changes can in fact improve their situation enough that they may be able to avoid ablation or medications. I've come to believe that it is rarer than we may want to think, though. This may additionally be why they simply tell us what they can offer, and leave the decisions up to us. What would be the point of them spending dozens of hours exploring all of these possibilities (or the feasibility of doing so) when it is more likely it won't work.

Not to mention, how resistant and sometimes angry some people can get when you tell them they need to make various lifestyle changes.

We need to understand their point of view, despite our cynicism, in order to achieve the clarity in which to make our decisions.

I am returning to the arrhythmia specialists at this point myself, in defeat. I have no choice but to try it in my eyes. My QOL has a much greater chance of improving through ablation, than staying the dismal same or getting worse.

So I've come to understand the point of view of the electrophysiologists in this way. If we are coming to them, especially if we are still coming to them after years of trying to better our QOL in various ways, we are asking for their help, and their help is what it is.

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ChasMartin
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53 Replies
BobD profile image
BobDVolunteer

At last you understand. We see so many people who reject medical evidence and try their own methods. Doctors really are only trying to help. I remember my own EP very early in our relationshsip telling me that looking for triggers was the way to madness. You have AF so you will get AF he told me. After three ablataions I was rid of AF but I still have arrhythmias.

reinaway profile image
reinaway in reply toBobD

This is so true Bob but I think that most people know it in their hearts but it takes a while to make your mind up what to do and take the final steps to do it. In my case 10 years!

Walras profile image
Walras

I found this very insightful and helpful. I too don't understand why my doctor does not try harder to figure out my specific issues rather than just suggesting surgery or numerous meds that all have significant side effects especially for those who are very sensitive to medications of any kind. It has been very frustrating. It seems like the solution is "one size fits all" when it comes to treating A-Fib regardless of your overall health and other medical history which I find hard to understand. It does seem as if that is the case as you explain.

I understand we have to make our own decisions, but when the choice is between surgery which may or may not work or cause other problems, taking meds that have serious side effects in some cases or to roll the dice on suffering a stroke or death, it is not very comforting and it would be helpful to have someone help in the decision making process, such as your doctor, who unfortunately is often concerned about personal liability and therefor unable or unwilling to guide you other than to say these are the options - good luck. It is a challenging diagnosis and one can become cynical!! Thanks for your post and I hope you find a solution that works great for you.

KiwiBlake profile image
KiwiBlake in reply toWalras

Hey ChasYou speak some real words of wisdom.

I've been on this AF roller coaster for almost 3 years. Personally I went through the 5 stages of grief, and have come to acceptance. I've taken the attitude that I've just got to get on with it (specifically I had an Ablation 11 weeks ago). So far, so good, I'm in NSR (just one little slip back into AF a month ago).

I've put my faith in medical science, these cardiologist's/ EP's are trained professionals.

Nga mihi

Blake

Singwell profile image
Singwell in reply toKiwiBlake

Yes, the 5 stages. Me too!

ChasMartin profile image
ChasMartin in reply toWalras

I never have reacted well to drugs, of any kind. I am only on beta blockers right now, and I don't do well on them either. They have tried to put me on flecainide for years now, and again recently, but I would sooner go for the ablation at this point.

I definitely agree that the whole situation is not comfortable. It's like they say, being between a rock and a hard place. None of the solutions seem ideal, but I'm taking the chance that ablation could be ideal at this point, due to the way my QOL is being effected otherwise. We certainly all need to come to these decisions in our own way, with our own experience, in our own time.

Nan1 profile image
Nan1 in reply toChasMartin

just out of interest Chas how often do you get AF ?

ChasMartin profile image
ChasMartin in reply toNan1

It is hard to describe my situation, I won’t get too far into it, but my episodes are less often than many others have, shorter in duration than many others, but extremely intense (near 300bpm at times, fainting, pain), and in my eyes now, possibly life threatening. I don’t just get AF. I’m experiencing multiple arrhythmias, apparently most recently including ventricular tachycardia.

Nan1 profile image
Nan1 in reply toChasMartin

I’m sorry to read that Chas. Take good care and I wish you well

Lainie2875 profile image
Lainie2875 in reply toWalras

I am with you 100% some people are very matter of fact about what everyone should do or feel but we are all individual and although we may have the same diagnosis the way forward is not cut and dried.

I have tried loads of different meds to which I was very sensitive so that route was a no no, have had several cardioversions 3 ablations and finally a pace and ablate procedure. I was then diagnosed with Heart Failure due to being left for very long periods of time in very fast AF .

I did make my own informed decisions but in the end had little choice if I wanted to live.

People on here will tell you AF won’t Kill you but the problems it can cause when left untreated certainly can, trust me.

I wish you well in your journey I do feel better having had the pace and ablate procedure and the Heart failure has actually improved with the meds I take for it but out of a ton of available meds I take just 4 that work very well for me so I suppose I got there in the end and have continued to adapt to being reliant on my pacemaker.

I’m here to tell the tale lol that’s the main thing.

Don’t loose hope

Best wishes

OzRob profile image
OzRob

Hi Chas,

Well written piece about 'The Journey'..

I have vagal Afib and now about 19 months in since my first episode. I am still in the 'trying to find my own solution' phase and have had my frustrations with the medical profession dismissing what is very relevant to the patient.

As long as I can keep my Afib burden low and function without any drugs I will persevere in trying to tame the beast.

Unfortunately the medical profession only recognizes 3 stages of Afib, they don't even acknowledge vagal and adrenergic Afib as 2 'types' of Afib. When I told an EP that I had Vagal Afib and could switch off my Afib with a Valsalva Maneuver he said it was not possible!

After reading much here and online I think we could add 20 different levels of Afib burden to describe everyone on this forum.

Dippy22 profile image
Dippy22 in reply toOzRob

ouch! I’m due my first phone consultation with the arrhythmia nurse this coming Friday. I’m planning to tell her that I’ve identified it as vagal AF (my osteo can switch it on and I can switch it off with yoga style neck and shoulder stretches) and I’ve been wondering how that’s going to go. 🫤

OzRob profile image
OzRob in reply toDippy22

Hi Dippy22,

I would like to know more about your methods of trying to control your Afib, PAC's and PVC's.

I am interested if they have been similar to what I have been trying. Do you take any medication?

Dippy22 profile image
Dippy22 in reply toOzRob

Hi Rob. I’m on Metoprolol 50mg and Edoxaban 60mg. However I’m pretty sure the Metoprolol makes NO difference whatsoever, but now I’m stuck on it until a professional tells me how to wean off. I’m winded when I walk upstairs or hills and I hate it!

I have perfectly normal BP, perfect cholesterol and the ultrasound I had last week showed my heart is normal on all functions.

My AF episodes have either spontaneously resolved or resolved after a period of sleep - one time it was just a 15 min nap in A&E! On one of my earlier visits to A&E I was hooked up to an ECG and curled up in a reclining chair for a nap When I awoke, the AF had gone. The chap sitting next to me said he watched the machine whilst I was napping and said my HR was bouncing around crazily from around 60/70 right up to 150+ and back down again. Curious, eh?

On Sunday eve, out of shear desperation, I started by laying on the floor, knees bent, feet flat with a firm towel roll placed under my neck. I did some deep, calming breath-work and softened my neck muscles. I did yoga plough pose, which is quite an intense pose and stretches not only the neck and shoulders, but also the upper chest muscles. I also did some self-massage to my neck, deep in under the occipital ridge, scalp and shoulders. Within ten minutes the AF that I’d had since Friday lunchtime had simply stopped. Even I was shocked that it stopped so quickly.

I think I now know how to manage this condition - regular deep tissue massage by an excellent osteopath, address/reduce stress and get back to doing my yoga and breath-work. I can’t wait to see if it works.

Bob, have you read about the link between the TMJ (temporomandibular joint) and the dorsal vagal nerve? I read that, in a nutshell, if the jaw is out of alignment, then it irritates the trigeminal nerve, which in turn aggravates the dorsal vagal nerve! This is the area my osteopath is working on; deep in the back of my mouth where the large, extremely tough jaw muscles are located. She did some deep work in there last Friday and triggered off an AF episode beautifully!

I’m really concerned about the metoprolol as it would appear that my sleeping HR is dropping to around 55 and it’s waking me up. I’m now being referred by the GP to the sleep apnea clinic. 😟

I’ve got a phone consultation with the arrhythmia nurse on Friday and I’m going to ask what she knows about vagal AF and how to reduce the meds.

Sorry I’ve waffled on for so long. Too much going on right now!

OzRob profile image
OzRob in reply toDippy22

Have you tried Valsalva Manoeuvres? That is the first thing to try if you have vagal Afib.

I think getting 400mg of elemental magnesium (200mg morning and 200mg at night) is helpful.

For the last 3 weeks or so I have been getting on an exercise bike just before bed and getting my HR from 65 bpm to 115bpm, it sort of interrupts the vagal system just before bed. That is really working for me.

I am now also trying acupuncture and have noticed that my PVC's and PAC's have dropped dramatically.

If you or anyone else reading this tries the exercise before bed I would love to hear if it helps your Afib. When we go away for a weekend I just jog on the spot on a bathroom mat to get my heart up to 115bpm, so you don't need an exercise bike.

Dippy22 profile image
Dippy22 in reply toOzRob

I’ve been taking a good dose of magnesium bisglycinate for a few years now. Plus I eat loads of high mag veg, etc .

I read that vagal is usually attributed to fit people, but for me resuming active swimming after a long break would class as intensive exercise (I’ve had a really bad back issue for almost two years, and what with covid I’ve been pretty inactive). I wonder if the stretching exercises I did Sunday eve were enough to raise my pulse and that’s what knocked it out of AF.

I’ll look up the valsalva manoeuvre. 👍

OzRob profile image
OzRob in reply toDippy22

Do you have a monitor to record you heart when sleeping? I now have one and it is the best investment I have made for my Afib. I woke up 30 minutes ago and was in Afib, this is unusual for me to wake up with it. I did the Valsalva Maneuver and I watched my phone that is linked to the monitor drop from 150bpm to 70bpm.

Dippy22 profile image
Dippy22 in reply toOzRob

I don’t have a heart monitor Bob.

I drive from home in Plymouth to my daughter’s near Oxford yesterday - most of the way in fog going from dusk to dark! I’m a reasonably comfy driver but it must have caused some stress as I started another AF episode later that evening. It went on through the night, so this morning I tried the yoga stretches that cleared it last Sunday and boom!…. the “hare pose” did the trick and it stopped! 😀

I also roll (massage) the top of my head across the floor to massage the scalp. I’ve found I’m very tight across my shoulder blades and up my neck into the back of my skull. I suppose one could think it looks a bit like an upside down Valsalva! 😀

Hare pose
Dippy22 profile image
Dippy22 in reply toDippy22

PS the arrhythmia nurse didn’t phone at 12.00 as arranged. 🤷‍♀️

Lbeat796 profile image
Lbeat796 in reply toOzRob

can I ask which valsava manoeuvre you did..Linda

TopsyJones profile image
TopsyJones in reply toOzRob

Hi. Would you mind explaining what adrenergic AF is . I’ve never heard that term before. Thanks a lot.

OzRob profile image
OzRob in reply toTopsyJones

Look at this article, you can then google more about it. richardbogle.com/blog/vagal...

TopsyJones profile image
TopsyJones in reply toOzRob

Thanks I will.

Lbeat796 profile image
Lbeat796 in reply toOzRob

Hi OzRob

At present, as far as I know as have never had a proper diagnosis, only that it could be SVT, flutter etc, I only have hours long episodes of tachycardia but I overheard consultant saying it will eventually develop into AF. Definitely Vagal confirmed by doctors.

Apart from sitting episodes out while dosing myself with magnesium, vagal manoeuvres can instantly end them. Turning head sharply to right hand side, holding breath when it first starts etc. episodes always start when I turn my head to the right or downwards but what starts them can stop them..sometimes.

Good luck trying to find a solution. So am I. But what works one time never works the next. Linda

OzRob profile image
OzRob in reply toLbeat796

Hi Linda,

When do you get episodes? Only when in bed? After an evening meal? I am interested in if your vagal system acts up like mine.

Robert

Lbeat796 profile image
Lbeat796 in reply toOzRob

Hi Robert

I get them mostly in the afternoon very seldom at night.

For instance if I am out shopping, maybe not had a lot to eat, and I bend down to reach something or stretch to reach a high shelf in shops. That can start one.

When I am happy full of the joys I think adrenaline maybe high and wipes the smile off my face.

I am a tea drinker now only decaf. I love chocolate but that is a big trigger for me.

Turning my head sharply usually to the right or like just now when I am keying this and my head is bent down it starts a run of ectopics which is fine but sometimes the run of ectopics will turn into a full blown tachycardia episode lasting up to 6 hours. Also sometimes when I swallow food.

All of these actions stimulate the vagus nerve which runs near your throat I think.

When Having a tachycardia episode I dose myself with about 800 grams of magnesium which sometimes helps. I find taking it every day does not prevent episodes and I know magnesium is hard on stomach so prefer to blast it when having an episode.

Have you checked out Dr Gupta’s videos on YouTube ..he is a consultant at York University. Very good

I don’t think one person in this group will have exactly the same symptoms. It is all so random.

Try not to worry. I am 72 and been having them for around 20 years.

Good luck..Linda

OzRob profile image
OzRob in reply toLbeat796

Hi Linda,

Sanjay Gupta is an amazing person, it is rare to find a cardiologist that publicly shares his broad knowledge. His videos have helped my a lot.

I agree everybody is affected by Afib differently. You describe body position/movement as what can trigger your Afib, I rarely get Afib during the day, but the times I have, it is from being hunched over a computer.

As you get older your range of movement decreases, also with so much screen time with computers and devices our bodies are less mobile for longer periods of time.

FindingCaradoc profile image
FindingCaradoc

Very thoughtful and well written post - I have come to similar conclusions myself, including about the realistic role of medical professionals. in my case, after an NSTEMI and my AF going from paroxysmal (3 episodes in 17 years) to persistent I wondered how much my lifestyle had contributed (it hadn’t been bad but could have been better). I have recently had an ablation (presently successful) and to try and maximise my chances of this lasting I have looked at lifestyle optimisation further (including reading ‘The Afib Cure’ by John Day etc.). Much food for thought there (pun intended) BUT for most mortals -even well motivated ones-to follow the advice to the letter may end up being counter productive (in terms of stressing) not to mention making life miserable (for me at least). So I have decided to significantly improve my lifestyle but not necessarily optimise it on the basis that it’ll hopefully help with my overall health and wellbeing, including AF and CAD. Best of luck to you.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Thanx for your speel.

Personally I agreed that we can choose to hover over research and research etc.

But I came to be 'interested in' but no cardiac specialist after discharge with metroprolol which is on my 'careful' list and which I didnt want. It was a indocrinologist Dr on the stroke ward.

After 1 year 3 months of struggle with excessive sweating the 24-hr monitor put my day H/R at 186 avge but at night 47.

So the public Heart Specialist changed me to Bisoprolol ad said it was better for AF patients and would be less likely to make me breathless.

I had another 24-hr monitor and day H/R was reduced only to 156.

Still not controlled.

A Locum interested recommended I go to a Private guy.

And CCB Calcium Channel Blocker changed my life. No more sweating profusely.

We reduced CCB Diltiazem to 120mg from 180mg in am.

Now added Bisoprolol @ 1.25 at night.

My BP great too, 123/70. 77-88 H.R Day and night stays at 47.

I could undertake an operation in March 2022 as I was finally under the 100.

I can't have an ablation - due to one chamber enlarged.

A Heart Ultra-Sound measures that.

So if CCB had not been offered to trial I could not have had the operation for internal damage (Johnson & J saga).

It is important that all tests are done to rule out any abnoralies before ablation.

I struggled on the Public Cardiac Specialist. I was sent back to her and a 24-hour monitor showed up that the CCB was exactly what I needed.

Hope it all works out for you.

Cheers JOY 73. (NZ)

And I take 110mg PRADAXA x twice a day.

In hospital at stroke time I was discovered with Thyroid Cancer which I had a successful removal of Papillary Cancer. 2 years scan CLEAR.

So I take Thyroxin to keep me at TSH 2.0. But I refused the Endocrinologist to take Radioactive Iodine and being in Suppression of TSH. As I was low risk.

Jajarunner profile image
Jajarunner

Excellent post. Thank you. For someone who already had a good lifestyle it is endlessly frustrating to read how I could "cure" my afib with lifestyle changes which I was already doing.!

CDreamer profile image
CDreamer

Excellent post - this is the reality. Although I would just add that having had ablation and assuming it works for you Lifestyle adjustments are important to maintain NSR.

javo123j profile image
javo123j

Great post Chas. Good luck

Singwell profile image
Singwell

Very pragmatic and insightful. In many ways, after 3 years, I have come to similar conclusions. We need to take responsibility for our decisions about how we live our lives, and get appropriate help to live our best lives when our wellness is challenged. Neither we nor the medics are solo artists - we work with them for our best outcome.

secondtry profile image
secondtry

Good post! I take the view the medics can't 'cure' in the majority of cases but just help the body to overcome the problem. Also it is a bit of a lottery as to which medic you get access to and their beliefs in drugs and ablations etc. Lifestyle changes, even with a Lone PAF diagnosis are often not going to be enough to produce a 'cure' either.

I belief AF for many (incl. myself) is easier to understand if you accept it could be caused by a multitude of factors (hence my mantra on lifestyle changes to help) and therefore to successfully reverse it you are likely to need tools to address each factor including pills, ablations & lifestyle changes. I wish it could be simpler!!!!

ETHEL103 profile image
ETHEL103

Hi I also suffer with 24/7Tinnitus and the medics treat it in the same way.I think they do their best but at the end of the day sometimes all they can do is watchful waiting.

momist profile image
momist

I stopped believing in 'triggers' a long time ago. "rarer than we may want to think," is just about perfect. Thank you for illuminating all this for everyone. I agree with BobD when he has said that the earlier the ablation the better, but I understand why anyone would want to avoid it. I've always believed that the mechanical approach to things is usually better than the chemical, but I too avoided ablation (abetted by the covid19 pandemic) until I was left with little option.

ChasMartin profile image
ChasMartin in reply tomomist

Thank you for your comment. Don’t get me wrong, I am actually right now forced to believe in “triggers” as I can bring on an attack by simply eating too much food these last few months. As a result, I’ve been eating so little that it’s unsustainable. I’ll end up underweight. It happened time after time when I would think I’ll just eat a tiny bit more than I have been, bam another episode. This is part of what’s driving me to finally seek ablation. The “trigger” isn’t changing the options I have to consider.

momist profile image
momist in reply toChasMartin

Yes Chas. With me that was both ways. If my meal came a bit late, it would result in AF, if I ate too much though, so would that. At first I was blaming the fat content, so I cut down on fat. It made no difference, and anyway I had sessions when my eating had obviously no influence, so I gave up on that theory. Maybe it's the stress of eating late or too much? Who knows? I could neck a couple of beers with no problem, but on other occasions a single beer might set me off. Some say cold drinks cause it, others say a cold drink stops their's. No clear triggers for me then.

OzRob profile image
OzRob in reply toChasMartin

Is your Afib vagal? Does it only occur when in bed or after a meal at night?

ChasMartin profile image
ChasMartin in reply toOzRob

Yep, seems to be! I've seen your posts regarding that, very interesting the things you've found!

Jmc43 profile image
Jmc43

Great post, thx for sharing. And I appreciate the comments. I too thought I could identify a trigger or two…and just when I thought I had it (a couple of glasses of wine? Eating late? Eating at all?😅 Etc.), it would disappear. Like trying to capture smoke. I think it was good for other reasons, as it resulted in some nice lifestyle changes, but no permanent results. Got and ablation and am taking a BB with flecainide as PIP, and it is largely controlled. Still have arrhythmias periodically but deep breathing exercises help.

Hilianna profile image
Hilianna

Very interesting post, I could identify with most of it. I am seeing an EP next week and unsure how the meeting will go. I saw the senior cardio nurse this week who confirmed my atrium had enlarged but not by much. I have had a fib for 3 - 4 years, esp the last three, and during this time my heart size has passed from normal to its current size. I have a fib bouts about 2 - 3 times a week for a few hours. My heart swings up and down between 40 odd to 165 during these times. I feel unwell when this happens but my worse symptom is fatigue, with some days being worse than others. Beta Blockers make me ill, I faint, and fleccanaide has no effect. Unsure what to do but worried if I do nothing my heart will go on enlarging. Best of luck with your journey.

in reply toHilianna

Some time ago, I have written the post under the title "Have you noticed?", which was later deleted by the admin. In this post, I have warned the folks here that, lately, we have more and more people suffering on bradycardia, with more or less frequent excursions in SVT, falsely considering it to be AF-attacks. Usually, the HR is in the 40-ties or 50-ties at rest, spiking, for short intervals, at 130-160. In your case, everything fits in. If you have the possibility to trace it electronically, the device will give you the information "possible AF" or similar. In SVT, the symptoms are far worse than in AF.

dedeottie profile image
dedeottie

Yep, I can’t help but agree with everything you say.

After PAF diagnosis at 55 I lost weight to a BMI of 21 gave up booze totally, gave up artificial sweeteners and became super healthy without over exercising. What happened? My overall health became much better including blood pressure so that is really good but AF progress plodded steadily but surely onwards till QOL severely compromised. After a long and complicated Ablation journey my AF and other arrhythmias seem to have been banished for now at least. Good luck with your ablation journey, x

Belle11 profile image
Belle11

Indeed it does seem that most of us need to use the interventions that the medics offer. Unfortunately, some doctors don't even mention that there can be triggers, mine certainly didn't. It was only through my own research on the internet that I learned about the foods and situations that can trigger attacks.

I had a cardioversion nearly 3 years ago, and so far have stayed in NSR. I take bisoprolol and rivaroxaban, but also avoid some triggers. I'd already cut out some foods that are listed as triggers, as it helped with other health conditions, and after my cardioversion, noticed that processed meat of any kind was followed by ectopics, so cut it out too. It's impossible to know whether I would have stayed in NSR so far or not without lifestyle changes.

There's room for combining lifestyle with medical intervention for those who feel inclined, but no compulsion, and of course always to accept that AF may well recur.

fibnum profile image
fibnum

Thank you for that very candid and insightful statement. I have had a very similar experience and am still somewhat in that stage of trying to prevent Afib with my own approaches.

I have had only one onset of Afib which was not preceded by a day or two's accumulation of stomach gas with the sensation of invading gas pressure into my chest or by sleep apnea. All other incidents have been associated with those two factors.

Since those triggers are very real and discernible for me, it only makes sense to deal with them, for now. Time will tell, and I may very well come to the same conclusion that you have in a few months.

I do not consider my actions a rejection of trained medical doctors, but rather a choice of putting "prevention" ahead of going with consequential symptomatic treatments. I was given Tikosyn a few months ago and developed a serious delay in the communication between heart chambers. After two days of intravenous magnesium, I stabilized, but I am still wary of the potential downsides to the treatments.

At least my attempts to shape my own treatment have resulted in an improved life style with major weight loss!

Thanks again, your message was really relevant for me.

JoniM profile image
JoniM

I’m finding this thread very validating. I have identified some triggers but even those aren’t consistent. It works best for me to focus on overall health- eating well, daily exercise, avoiding alcohol/caffeine, trying to keep stress to a minimum,etc. and accepting the afib when they come. ( have PAF—always self corrects). I’ve recently moved to daily metoprolol and flecainide and it is significantly reducing episodes. Met recently with EP and he was informative and pretty open to my views and preferences around drugs vs ablation. Clearly he prefers the ablation but said it’s up to me. I think I may be holding that out as an option but not ready to go there. One problem I have is a skeptism of modern medicine. Im not a totally whole earth person but I do believe much of medical science is biased, especially here in the US, by the researchers who also have investments in pharmaceuticals, biotech or procedures they want more experience with. Of course we are all biased myself included so I try to check my own biases. I had 2 completely natural, unmedicated child birth deliveries fighting off the drugs; avoided hormone replacement therapy when it seems every woman in the US was given it at the age of 50, and having my doctor recently agree to no statins after a coronary CT scan came out with a score of zero. Pretty good for 70 years old. Sometimes I have been right to hold off on drugs or procedures but maybe sometimes not, who knows. Afib has been a much bigger challenge and I’ve clearly made the leap into accepting the drugs and glad I have. I basically agree with the views you have expressed ChasMartin and others here and think there is a basic tension that many of us experience with AFib in which we want to rely upon the wisdom of our medical professionals while also balancing that with our own unique physical and emotional situation. Such is life I guess.

ChasMartin profile image
ChasMartin in reply toJoniM

I am the same way. It is like pulling teeth to even get me to take an OTC pain medicine when I have a headache. I avoid it, trying drinking water, using a massage technique I learned involving pressure points on either side of the eyebrows, and other things, until it is absolutely unbearable, before I'll take anything.

I've certainly found that checking our own biases is perhaps the hardest thing to do, but very important. Thanks for your post!

ChasMartin profile image
ChasMartin

All of these comments have been so interesting to read, to see people describe all different stages of the "journey". As so many have mentioned, the changes so many of us make in response to our condition as a whole are good for us in the long run. Perhaps preventing some comorbidities, even if those changes do not end up stopping the AF. So it is certainly not to say we shouldn't try these various things to better our health. It's clearly a worthwhile undertaking for many reasons, regardless of the AF outcome.

AussieHeart profile image
AussieHeart

My trigger is definitely dehydration especially in summer, some foods, some exercise. My beef with “many” EPs are they lack the art of communication in taking time to explain what’s happening and why. They treat you like you know what AF is but you quickly find out most people haven’t heard of it, or know how to help you (from dieticians to exercise physiologists) despite stats saying 1 in 4 people worldwide have an arrhythmia! It must be the most under researched condition going! When heart specialists don’t listen or hear you and instead refer to “our website” that isn’t a patch on anything I’ve read here, they push the patient into googling their condition. The merry-go round ensues. I’ve had my ablation 2 years after symptoms emerged and a year after formal dx. It’s been a bumpy ride, the surgery even bumpier and the blanking period (still in it as it’s been 7 weeks) bumpier again. It’s Summer today and I’m bracing myself for future episodes … brought on by heat-induced dehydration, the silly season and doing too much in the garden. My go to is water and the horrible AF meds I hope in a few weeks I can ditch. Go well fellow aFIB vets … the journey is personal. And thank you to all who contribute to this page, I’ve learned and continue to learn much :-)

ChasMartin profile image
ChasMartin in reply toAussieHeart

That has been my biggest gripe with doctors. We end up googling because they don't bother to tell us anything, and then if we dare bring anything we found up, they say "you should stop googling". LOL

Best wishes for your healing!

James11112 profile image
James11112

Thanks for the timely note Chas. It describes my situation to a tee. Like you i have investigated all natural options. I have always had a very healthy organic diet, plenty of exercise, supplements, ideal weight etc. The one thing I could not control was the onset of any body stressor eg. bad news from the kids and covid to name a few. Each would put me into AFIB and now Atrial Flutter. The last straw was being put on amiodarone with its impact on the thyroid. I have opted for an ablation and go in Monday for my first to correct Atrial Flutter. It heartened me to read of someone who has gone through a similar journey. I wish you well in your fight.

Speed profile image
Speed

Excellent post. My one caveat is my own very specific experience. Having had 2 ablationd to resolve A Flutter, I acquired AF which after very rare symptoms for the gist 10 mths quickly increased. However, I’m an active amateur (socially at club - not an age group athlete) runner / cyclist and these episodes only EVER happened during a run. By keeping a diary and wearing a chest HR monitor, I was able to establish that the episodes happened when my HR exceeded 140 bpm. I now continue to exercise, continually monitoring my HR, aiming to jeep it below 135 with a red line at 140. This means slowing for hills and fir good measure, a gentle build up of pace. Absolutely no sprints, hill repeats etc and no more spinning classes. For good measure, I try to ensure my Flecainide is taken a few hours before exercise and if going forward a morning run, will delay my morning coffee until after. I also rarely gave more than a few glasses of red in a day.

My EP has agreed to a wait and see approach, after we previously agreed a further ablation would be appropriate. He is pretty certain that the source is the 4x Pulmonary Vein and so known cause easily isolated.

So although I agree with the general concept of your post, rarely, a compromise solution outside of Meds and Ablation may in certain situations be possible. I do accept however that in my situation, the AF may progress and the trigger HR ay get lower or some other progression may lead to Ablation No3 -

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