This is mostly a venting so I apologize, I just need to get some things out of my head.
I have been diagnosed with atrial fibrillation. I've definitively and repeatedly connected it to my digestive system.
In my most recent encounter with a doctor directly after I had been taken via ambulance to the ER with a ~200-250 heart rate that ultimately came down with enough injected metoprolol - the doctor looked at all my tests past and present and voiced his incredulousness that I have afib at 39 and that there is no structural issues on my echos, flawless stress tests, thyroid fine, no sleep apnea, etc etc. By all accounts I am in great health otherwise.
He mentioned he thinks it must be hereditary, and asked about family history, but I am not sure unfortunately. I made the mistake of not completing a medical record search when my dad passed away, and the records are no longer available. They may not have told me anything anyway since he never saw a doc until after his legs became extremely swollen with fluids and then in ICU for 2 weeks and diagnosed with CHF. He passed away a month later at 57. He was also an alcoholic. His girlfriend did mention after he passed that he had complained of his heart doing "things" for years but would never see a doc about it. I can surmise that he may have had afib that led to the CHF, but I have no proof of that. Clearly his alcohol use would be a huge factor in the afib not necessarily being heriditary also. AFAIK neither of my grandparents had any heart issues.
On my mom's side there is heart disease, my grandfather died young of a heart attack in his 50s, as well as my uncle, even younger at 32, of a heart attack, but he was very tall and weighed over 300lb.
I don't believe it's hereditary, it doesn't make sense why I would have no issues until suddenly at 36. I believe it's my digestive issues compounding and getting worse, via antibiotics destroying my gut bacteria, the inflammation causing damage etc. And possibly facilitated further by the bad reaction to Rizatriptan (chest tightness, pain in my upper legs) that happened 2 weeks before the very first episode that ever occurred. Along with bouts of IBS over the years (though they were few and far between until more recent years), a lot of difficulty eliminating gas (and more gas than usual) - I also more recently I have been getting signs of silent GERD (mild sore throats and blocked ear). When these things flare up is when my afib episodes occur. To be clear, the digestive upset always comes first.
The outcome of my most recent bout and ER visit was that I am on atenolol morning and evening 25mg (50mg per day) - I've had 3 episodes since the ER visit 2 months ago, all of which my heart rate stayed around 150 max, which is fantastic compared to the sustained terrifying 250+ in my episodes prior to upping the dosage. This is however more episodes back to back than I've had ever but my digestive system has been an absolute wreck (directly associated with a recent 2 week visit from my husband's family in which I ended up eating out a lot and not controlling the ingredients in my meals as well as normal) I cannot seem to rebalance it, though I am working on some more direct measures now to test and get recommendations to target balancing my gut bacteria long term after my new primary doc recommended I complete a test for just that - I will be waiting a bit for those results.
I hate the atenolol, it saps my energy, and I think it also makes me depressed. I will continue to hope that I can find a solution so that I will not have to take it. My new doc is willing to explore that with me to see if there is a solution, all the others I've had simply expect me to give up without trying anything at all and just swallow the pills.
I was diagnosed with paroxysmal AF in Jan 2010. 65 back in the day, now 77!
Do understand that AF is a hydraheaded monster. It is all things to all people. There isn't much in your story that causes me to shudder in disbelief. Absolutely no doubt that AF has connection with gut, with vagal nerve, it is often associated with genetics. Thats it in a nutshell.
I would suggest you research vagal nerve - don't just Google it, thoroughly research it. Good to start with is to check out the schematic diagram of the vagal nerve. This means researching the nervous system and its various components.
You wrote , and I quote ............ I don't believe it's hereditary, it doesn't make sense why I would have no issues until suddenly at 36. I believe it's my digestive issues compounding and getting worse, via antibiotics destroying my gut bacteria, the inflammation causing damage etc. And possibly facilitated further by the bad reaction to Rizatriptan (chest tightness, pain in my upper legs) that happened 2 weeks before the very first episode that ever occurred. Along with bouts of IBS over the years (though they were few and far between until more recent years), a lot of difficulty eliminating gas (and more gas than usual) - I also more recently I have been getting signs of silent GERD (mild sore throats and blocked ear). When these things flare up is when my afib episodes occur. To be clear, the digestive upset always comes first.
All that suggests to me Vagal Nerve !
You may care to click on my user name and see if you can look back at some of my earlier posts.
Meanwhile ... consider that you are at the first step of your journey of understanding AF.
John
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Hi John, thank you for your post. I have researched quite a bit about the vagal nerve. My new doc also has me reading a book about the vagal nerve and it's various connections to our health (which I've only just started to read) as well as exploring ways to possibly "tone" it etc. For now I am focused on gut balance first and foremost. I feel I read somewhere that vagal toning can actually be detrimental for vagal afib, though I do not remember where I read that or even if I may have misunderstood it. I also read somewhere that beta blockers should be avoided with vagal AF, so that has been confusing since the atenolol is clearly keeping my rate lower during episodes.
The nature of my episodes being such an extreme heart rate when they happen, and acutely felt through horrible burning sensations in my chest, pounding like my heart wants to jump out of my chest, and pain/burning in my upper back and neck, presyncope, etc - make me really want to explore ways to avoid them as much as possible, so I feel getting the digestive issues under control is of utmost importance to my well being. The digestive issues are bad enough themselves, the afib episodes are worse.
By far the strangest thing is that the symptoms feel nearly identical whether my heart rate is at a "height" of ~150 with the new level of atenolol now or ~250 in the past, other than the clear difference in slightly slower pounding. These burning etc symptoms only occur at what feels like "the height" or "the limit" is the only way I can describe it. Like my heart will kind of do runs of tachycardia slightly lower like 120-130, then go to NSR 60-70 back and forth, with very sudden switches between the two, but when it just runs with the tachycardia at the "height" for an extended time straight, it causes the burning etc symptoms at what to my senses seem to be the same severity, as though those symptoms are not rate related, but rather something else? It's just strange.
I can’t comment on the burning sensation but it is well accepted here that digestive issues and AF can be connected. Also inflammation/infection and AF are connected. So good luck with getting on top of the digestive problems. I wouldn’t discount the sore throat, not sure why you think it’s Gerd?
Your story of being diagnosed with panic attacks etc is soooo familiar but ‘lack of stamina’ is a new one 😂 Still good you got diagnosed at last. The Kardia is a popular device for recording AF etc and recordings are accepted by medics, it seems Apple Watch recordings are not?
Silent GERD (AKA silent reflux and other names) is different than GERD. The acid can come up and effect your throat/voicebox - translating to inflammation in nasal passages, ears, etc - and you may not even notice anything other than those symptoms. There's no heartburn to easily point at.
They "accepted" it - but every doctor I see had a different idea. Even the electrophysiologist who originally suggested Afib to me, had also written in his notes that "notably afib has not been recorded on multiple ER visits or stress test" as though he questioned his own diagnosis being solid.
I know about silent Gerd, what I was asking was why you thought of Gerd rather than a ‘normal’ sore throat? I have had‘normal’ Gerd and I suspect it affects my asthma etc even though I don’t get the extreme reflux and heartburn I used to get.
Ah sorry I misunderstood. Basically it is a recurring issue, not constant but there are periods where it will recur for weeks and then not happen for months, and I have no other indication as to what else it would stem from. Along with occasional obvious acid in throat/reflux - but most of the time I don't notice that.
OK Carneuny is addresssing the gut situation but let me talk about the reasons for AF.
AF is a mongrel condition which is all things to all people but basically can be genetic or acquired. If your heart is structured in a particular way (the genetics) then you may have a predisposition to AF which can be triggered by just about anything. The vagus nerve is a favourite stimulus for it and manifests as digestive problems which trigger AF events.
You can also acquire AF. Endurance athletes and fast jet pilots often develop AF due to the damage they do straining their hearts all the time. As you already know it is also a condition of an othewise healthy heart.
In younger people ( very young adults ) one off events can be the result of binge drinking which hopefully will be one offs as lessons are learned.
Fifty years ago AF was considered a natural result of ageing and sadly many younger people, particularly women never had diagnosis as it was always blamed on anxiety or hysteria. I know!
Since I became involved with the charity when it was formed in2007, the amount of knowledge has risen exponentially and continues so. It is still rather sad to note a doctor telling you that you are far too young to have AF. I know of at least one in their teens!
AF is a long journey which some of us have been on for many many years and patience is sometimes needed to get the right treatment. May I suggests that you go to our website (Atrial Fibrillation Association) and read till you drop as knowledge is power and the more you can engage with your doctors the better can be your treatment.
Thank you Bob. It's very tiring navigating through the doctors, especially when it seems 90% do not actually truly listen to the patient. I recently decided to turn to integrative medicine, as it is something I haven't tried yet. I am doing so in an office that includes naturopaths, nurse practitioners, and MDs who work together, this diversity is ideal in my mind. They are willing to listen and explore more. I will check out the website, I believe I have been on it for brief reads but I'll explore further. Thank you
Hi, You sound so much like me. I started having heart trouble in my mid forties, seemed out of nowhere I would get daily high runs of 200-250 bpm that would make me feel faint. Sometimes I would feel that burn also. I did get an ablation after three miserable years of this almost ruining my life. I also had been diagnosed in my 30’s with IBS so stomach problems were off and on for years. My doctor tested me twice for celiac and was negative. I did discover aspartame and sucralose triggered episodes during that time. After ablation, my heart was still acting up but not getting to the high 200’s anymore. At that time I was seeing a chiropractor who was also a naturopath and she suggested seeing what would happen if I cut out gluten/wheat. I remember telling her “ but I don’t have celiac”. She said just try it. So I did and everything go so much better until episodes went away. To this day, if I eat anything with artificial sweetener or gluten in it, my heart will flip flop and get out of rhythm. Even chewing a piece of gum with aspartame causes a reaction. I no longer have ibs either since going gluten free. No celiac but I am certainly gluten sensitive. I am thankful the chiro suggested this as I would have had to stay on meds for it. I hated metropolol and flecainide. I felt like a zombie on flecanide. I also see a functional medicine doctor for overall well being. I was diagnosed with hypothyroid and could not take big pharma or other “natural” thyroid meds until he had a compounded form made for me. All others bothered my heart but compounded does not. We have to live and learn a lot along the way. I can tell you are a seeker and know that you will find the answer.
Thank you so much needlestone, I'm so glad you were able to find some relief in your searching, it's encouraging to hear. I have avoided artificial sweeteners for a long time as they used to help trigger my hormone related migraines (something I haven't had anymore for the last 5 years or so). Gluten could definitely be a thing for me, I haven't done a full conscious direct avoidance of it but 8 years ago or so I had switched to a mostly grain free diet for about a year and I have to say I did feel really good on it and I know there was a long period where I had no IBS episodes, but I'm just not sure of the timelines anymore. Again, thank you for the encouragement.
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Hi Aoxo,
Have to totally agree with BobD's comments. But to go back to "genetics" - it was only long after my diagnosis of paroxysmal AF and I was playing around with "Ancestry" in my family I discovered;
1 - my paternal grandfather died from a series of small strokes back in 1964, aged 84. Nobody alive today who can tell us the cause of the strokes ... so AF ??
2 my paternal 2nd cousin has AF
3 I have AF
4 My daughter unexpectedly lurched into AF when pregnant with her two daughters - a few years apart. Since she stopped breeding - no more AF. Instead she looks like a stick insect and practices Thai Kick Boxing ! Still no AF.
Incidently my 2nd cousins paternal grandfather was an older brother of my paternal grandfather.
So in genetic terms you could say the my daughter has been given her propensity for AF through her paternal family line. Thanks for nothing she says
🙂
John
PS - I gather now you have read all these comments on here you can see why I called it a hydraheaded monster.
Hello. I sympathise with the frustration around medics not doing joined up thinking. With a hybrid condition like AF it's so important but alas because not life threatening there's much work to be done. You're making a good call by heading towards integrative medicine. Some resources to check out:1. YouTube channel York Cardiologist- some great info on vagal AF, digestive links and different medications.
2. The AFib Cure - by 2 American EPs with much useful information about the 10 body systems to pay attention to if you have AF
3. The Complete Acid Reflux Diet Plan - book by a nutritionist that will help you address your silent reflux issues. As a long term sufferer of LPR (laryngopharyngeal reflux) I highly recommend this book.
I'm one of many with no reason for Afib. I'm active, healthy, good diet, never smoked, not overweight and never drank alcohol excessively. It sure us a b*mmer to end up with it but genetics are just stacked against some people especially for you to get it so young.Hope you get sorted out soon x
Also ask why they put on beta blockers vs calcium channel blockers. Never hurts to ask. I was also feeling like I was dragging an anchor around, until switched from Metoprolol to Diltiazem. I was back to feeling great again. Just a thought. Won’t fix your gut issues, but maybe it will let you function better until you can figure this out.
Thanks for mentioning that. I was not aware that Diltiazem could be helpful for but issues 🙂 Fortunately I have never suffered from gut issues, but good to know.
I think my digestive issues got worse after a round of Z-pack a few years back. It is an intensive 5 day course of antibiotic, and made me extremely ill feeling while taking them. I had been on antibiotics a few times before that, more so as a teen with repeated bouts of bronchitis. My first IBS episode was around when I was 16 and would have been just months after I had a massive leg infection (from a bruise and burn on my shin) and was in hospital for a week with IV antibiotics, no clue what kind they were.
I think it is highly likely given that you are quite young that you might have had several courses of FQs in the past. In the 90s and noughties they were the go to antibiotic ( especially in the States) for all kinds of infections particularly bronchitis and UTIs . You may be suffering from Fluoroquinolone toxicity syndrome. One of the nasty side effects of FQs is to make you intolerant of drugs and even foods that before the toxicity you were fine with. Also because they are actually more like chemo than normal antibiotics in the way they work they can have delayed effects . They are ace at destroying the microbiome and causing severe digestive issues - worse than other antibiotic. They can cause arrythmias though long QT is the one doctors are most familiar with and major musculoskeletal problems. The first IBS occurring after the leg infection makes me strongly suspect you were given an iv Fluoroquinolone probably Levaquin.
Thank goodness you have a good Dr and able to get treatment from integrative Drs. I would love to be able to do that. But can't on limited income plus very few of these types of Drs where I live. I know I could do so much better if I had access to those Drs. So I know you will get good help now. And you will be better. Take care.
Hi, I like the title of your post, "Questioning Everything". You really should, especially when it comes to afib, a condition that can significantly affect your life. The more you learn about afib, the more you will come to realize that no single approach fits all and that not all doctors are as versed in afib as others.
First, afib can be hereditary but it also can just appear at almost any age for any number of reasons. I had my first afib episode at about your age and I also had a structurally sound heart.
Afib has many triggers but sometimes there isn't a trigger, just an electrical disturbance in the pathways to your heart. But yes, digestion is a big trigger for many, and so is excess alcohol. Being overweight is another major trigger.
To oversimplify, your choices are rate control, rhythm control or ablation.
At your age and stage, and the fact you have fast afib, you will want to be in normal sinus rhythm (NSR) as much as possible. And, equally important, you want a good quality of life. If the drugs you're on are interfering with your quality of life, then like the title of your post suggests, question how necessary are the drugs causing those side effects.
I don't know the frequency and duration of your episodes, but I'll give you my own example.
In the beginning, my episodes were years apart. So at the onset of an episode, I simply took a calcium channel blocker and a beta blocker to lower my heart rate to around 100. Then I waited it out and usually converted back to NSR within 48 hours. Because my rate was controlled, I went about my business until I converted. After I converted I stopped all medications.
Like yourself, many are put on beta blockers in situations like I just described, even after the episode has ended. I'm not sure why because beta blockers can significantly impact the quality of your life. Not for everyone, but for some, like me and apparently yourself.
I also don't see the point because beta blockers really don't do much to keep you in NSR anyway, they just seem to be a knee jerk reaction with many doctors. So, first thing I would question is why you are on a beta blocker when you're in NSR and why can't you just take the beta blocker (or a calcium channel blocker) when you go into afib for rate control. Then stop it when you're back in NSR. This alone could significantly improve the quality of your life.
Since your heart is structurally sound, you might also inquire about a pill in pocket approach using a drug like flecainide. With flecainide, many can convert to NSR within a matter of hours, instead of waiting a day or so like I did with my approach. You generally take the flecainide with a beta blocker or calcium channel blocker, but after you convert, then you're drug free (except for a blood thinner depending on your CHAD score and advice from your doctor) so that again means better quality of life.
And then there's ablation. Read as much you can about it. And you will want to speak to an ep, who specialize in ablations. In fact, you may want to speak to an ep now, or at least a cardiologist very well versed in afib. Many doctors aren't, and a good example is the doctor that scratched his head when you went into afib at a relatively young age with a structurally sound heart. Not that uncommon.
Good luck in questioning everything, it's the right approach. Hope you find the right answers.
PS You may want to look into the FODMAP diet and/or get treated for your reflux/GERD, which in your case sounds like LPR. An ENT is the right doctor to see for that. GERD and LPR are also my triggers and I'm currently taking a PPI for it as well as modifying my diet.
My episodes are normally months apart but more recently I've had 3 in the past month - from the beginning they have ranged from an hour or 2 up to 8 hours, always in the evening, never extremely long. After an episode, the next day I am always in perfect SR, not even any ectopics, with extreme fatigue, and my rate lower than normal in the 50s (I am usually in the 60s during the day). The timing and duration are also reasons to believe it is digestion related as I understand.
I do have an EP, and he did tell me beta blockers would not stop the episodes, and are entirely for rate control based on the ridiculous heights my heart was reaching. He suggested I try flecainide as well and I asked him if I could do pill in pocket, and he said no I would have to take it daily. I don't know why, maybe new guidelines, or US based guidelines as I see a lot from the UK on here who have PIP? But that is also why I didn't accept it. I am having enough of a hard time with the beta blocker, I want to give other things a try before I try another daily med.
I have had a falling out with him and I will likely not see him anymore, I have a previous post here regarding how taken aback I was at my visit with him late last year. After he had told me my afib was vagal mediated prior, I had expected he might know a digestive specialist to point me to. In short, his answer to me saying I believe things like onions and garlic upset my digestive system which triggers episodes was "afib rarely has triggers" which is obviously not true - and when I told him I watched my EKG on my watch return to NSR instantly following a bowel movement after some digestive upset/afib, he said "we're always going to be doing something when afib happens" as though I was making incorrect connections entirely. I asked "do you not think seeing a gastroenterologist could be beneficial" his response "they will run some tests, and you'll still have afib". While that may be true, perhaps I could have less afib? At the end of the appointment he asked me like you would a child, to repeat back to him the things he had told me about what my options are, which were take the meds or get an ablation. It's one thing to have no interest in discussing these things because it isn't your specialty, and yet another to sort of manipulate the patient into focusing only on your specialty. I honestly wish I had walked out instantly when he asked me to repeat things back to him, but I was in a vulnerable state at that point because the entire course of the appointment was so unexpected. I also did not follow through on what I had originally planned, which was to go see a gastroenterologist after that appointment, because I felt discouraged and didn't want the disappointment of yet another doc dismissing me. I saw him for the last time virtually a day after I had been in the ER two months ago - and when I stated again that I believe the digestive issues are a precursor to my episodes, he said "I can go with that" as though he was ok for me to call them a "precursor" but not a "trigger"? I'm just done with him at this point.
I've been throwing darts at my digestion for some time now - trying various probiotics, eliminating things etc, but this test my new doc has me doing is supposed to see EXACTLY what is unbalanced and give me targeted food elimination and specific probiotics. I'm hopeful.
You should definitely ask him why you can’t use flec as pill in pocket (PIP, but I’m guessing he will say because your episodes are getting too frequent, and he may have a good point.
On the other hand, you may just be having a bad month and could go back to only going into afib every few months. Let's hope but not expect.
As I see it, if it's just every few months, than a PIP approach makes sense because you will not have to take daily meds and have to deal with their side effects. And a PIP approach doesn't necessarily have to be just flec, especially if your episodes are short, like yours seems to be. I just used rate control meds -- diltiazem and metoprolol) at the onset of an afib episode. Once my hr got to 100 I would go about my business until I converted.
But if it turns out your episodes are too frequent, then it's really daily flecainide (or some other daily anti-arrthymic) or an ablation.
Unfortunately, with daily flec, you probably will need a nodal blocker for safety which is usually a beta blocker, but it can be a calcium channel blocker like diltiazem which is what I use. And if your like me you will have to deal with those side effects.
In any event, until you make a decision about flecainide, I still don't see the utilty of a daily beta blocker.
Meanwhile, if digestion is your primary trigger, you might want to aggressively deal with it. Do a food diary and look for triggers. Research the FODMAP diet. Talk to your doctor about taking a PPI. Elevate the head of your bed. Don't eat too close to bedtime. Lose weight if your overweight, etc.
I think considering my expressed dislike of medication he decided I might choose ablation if he didn't give me the PIP option. I hate to be cynical, I don't like cynicism - but I think I'm right on that.
I've already attributed the recent string of episodes to family visiting and eating things I shouldn't have. I had also showed the EP evidence from my watch as I record every episode, where I didn't have any episodes for 10 months during the pandemic because I was strictly controlling the food ingredients I was eating. He's just definitely not the doc for me. He's made clear he would rather focus on surgery and meds and not at all on any silly idea of lifestyle/diet change making any difference.
Let's hope they don't stay frequent. I will seek out a different EP and try for the PIP approach in tandem with the digestive reboot. Thank you for the advice
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Hiya Aoxo,
Have you ever considered or actually had a consultation with a Nutritionist ? That was my start point ( having been cleared of IBS and Coeliac Disease) and my first moves were to go on a course of probiotics, while, at the same time cutting out, gluten, wheat and oat products. Learned how to keep a food diary, looked at FODMAPS and so on. The Nutritionist discipline did more for me than any GP or Cardiologist.
John
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This test I'm doing based on my new doctor's recommendation is designed to help me figure out exactly what probiotics my system specifically needs. I've thrown probiotics at it over the years, nothing has worked. This is supposed to pinpoint which specific type of probiotics might help - along with what foods will promote the good bacteria that I'm lacking, what foods to avoid to help kill off any bad bacteria, etc. Essentially an attempt to balance my system. So I'm "sort of" seeing a nutritionist. 👍
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Aoxo,That sounds a much better proposition. Good luck
Please be careful with PPI use. I believe my AF was caused by a 6 month doctor prescribed regiment of 40 mg pantoprazole for the treatment of gastritis. PPIs (not H2 blockers) have been shown to be linked to AF due to the calcium, B12 and magnesium deficiencies that long term use of PPIs can cause. Not only that, it took me over a year to get off the PPI due to the acid flash back that occurred was so awful, I would go back on them. Not to say how bad the AF would be when my stomach was upset. Weaning off PPI by a strict diet and replacing PPIs with H2 blockers finally broke the cycle. I did have an ablation and have been AF free for 29 months, but any tummy problems always bring on PACs and PVCs until the issue is resolved.
Good points. Not crazy about taking PPI's for many reasons, but reflux/GERD has been a major afib trigger for me and PPI's significantly reduce my reflux. H2 blockers not so much. Plan on trying to wean off soon as I'm now on flecainde.
Not planning to try PPI atm, I am aware of the issues with them. I avoid medications as much as possible as a rule really. I rarely take pain meds with headaches unless they're unbearable etc.
Hi, Aoxo, I am very optimistic about your seeing integrative doctors. Here in the US many of us rely heavily on their expertise especially in the field of gut bacteria. I have recommended several family members and friends who have suffered from serious G.I. issues to them, and after being prescribed medical grade probiotics, all were either healed or vastly improved. Treatment Involved dietary changes as well, but eliminated foods were gradually added back in with no ill effects.
There is also a book on reflux that has proved to be a godsend- Dropping Acid, by Jamie Kaufman, MD.
Good luck with everything. I think Integrative medicine is a great path to pursue.
Thanks Caellie. This test my new doc has me taking is to test the microbiome, figure out what is lacking or overgrowing etc, and give suggestions for dietary changes and specific probiotics to rebalance. I am hopeful it will work! Thank you for the book suggestion, I'll add it to my reading list!
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