Afib isn't a disease,it's a malady - AF Association

AF Association

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Afib isn't a disease,it's a malady

Jdunk profile image
56 Replies

I have paroxymal afib. I do not feel comfortable taking current meds. I am not convinced that ablation is correct either, since I do not know the cause. I am looking for a natural solution to sinus rhythm. I don't experience rapid heart beat just elevated beat when in afib(Normally below 100 beats/minute) For 2 years Magneseum seemed to alleviate my afib to approximately 1 episode every other month. Presently I have afib nearly every other day. It subsides in a few hours most of the time. Occasionally it lasts 12 hours. My condition has been such for 7 months. My mother is 95 yr old, she has had un medicated afib for 30 yrs.

Any suggestions?

56 Replies
CDreamer profile image
CDreamer

My suggestion is that as you don’t seem to be that symptomatic and all treatments for AF are currently to improve QOL and as long as you have been screened for stroke risk and discuss taking AntiCoagulants with your doctor, that is the only ‘essential’ treatment.

As to ‘natural’ solutions - not found one yet that always works but Heart based meditations certainly help me when in episode, eating ‘clean’, Chiropratic adjustments, good sleep, improve vagal tone. And I still have very symptomatic AF - but it has worked for many people.

I take AntiCoagulants to reduce my stroke risk - scoring 2 on the CHADSVasc scoring system - I’ve had years of meds and 2 ablations and now come to the conclusion that it’s something I just have to live with.

If you do find something - then please do share.

Best wishes C.D.

PS - I can’t take Magnesium.

Jdunk profile image
Jdunk in reply to CDreamer

Thank you very much for your reply

Jdunk profile image
Jdunk in reply to Jdunk

Is there proof or research that indicates anticoagulants prevent stroke? If you take anticoagulants will you remain stroke free?

CDreamer profile image
CDreamer in reply to Jdunk

There are many, many studies that show that AntiCoagulants reduce the risk of stroke but no one could possibly say it would leave you stroke free. Studies rely upon herd statistics and until we can have personalized risk analysis - methinks in about 100 years we may but too late for you and I - risk is calculated from average population statistics.

Of course taking the AntiCoagulants can also slightly increase your risk of bleeding and a cranial bleed can also cause a stroke.

It is a matter of balancing the worst risk and the most benefit.

When I first joined I was very against ACs and ALL meds but over the years I read more studies (mostly PubMed) and discussions with my doctors on this subject than any other.

After 2 ablations I became AF free for about 3+ years and wanted to stop - which my EP very reluctantly agreed to my doing. My AF returned and my first thought was anxiety of stroke. I was by then older and my EP had told me that I should start taking them again age 65. My only risk factors were my sex - female and my age - 65+.

AF in itself was not my concern because as you say, it’s not like an infectious disease but the stroke risk is at least 5 times more than for someone without AF and increases year on year. The statistics of people dying with stroke associated to AF were horrific and the main reason for the AFA existing - to educate both public and medics.

But at the end of the day everyone must make up their own minds - your body, your choice - but please make an informed choice and do your research.

AFA information pages are a good starting place.

Very best wishes C.D.

BobD profile image
BobDVolunteer

AF is a condition actually. We can all deal with our condition as we please and yes some people find that diet and lifestyle can help a lot. What is not up for negotiation is the risk of stroke that AF increases. This is something we should all consider and where appropriate take anticoagulant to reduce. . Any treatment is only about improving quality of life so if that is acceptable then lucky you. Just read all you can about the condition on AF Association website so you can make proper educated choices.

Jdunk profile image
Jdunk in reply to BobD

Thanks for your reply at all these suggestions are helpful

Jdunk profile image
Jdunk in reply to Jdunk

Perhaps symptom is the correct term to describe afib? But, a symptom of what problem? That may be the question.

SRMGrandma profile image
SRMGrandmaVolunteer in reply to Jdunk

As my EP said, AF is a reflection of your overall health. When the body is out of rhythm, the heart gets out of rhythm. Some contributing factors include Diabetes, hypertension, obesity, endurance exercising, high stress lifestyle. If you Google PubMed articles you can find a lot of information of the exact statistics of how much anticoagulants reduce your risk of stroke. Be well!

Jdunk profile image
Jdunk in reply to SRMGrandma

Thank you very much for your help👍

secondtry profile image
secondtry in reply to SRMGrandma

Your EP is on it for me, you are lucky to have found him/her.

Zozzy profile image
Zozzy in reply to Jdunk

I think that's a key unknown. To the extent that people have found ways to mitigate the symptoms by, for example, reducing exercise intensity, changing diet, taking supplements, changing sleeping position, spinal manipulation, ablation, etc. it appears to me that AF is probably a symptom of more than one underlying cause. I've read theories, but there doesn't seem to be concensus.

My personal opinion is that the immediate cause is some kind of cross-wiring in the nervous system. However, even if I'm right, that in itself must have a cause. And the fact that many people are not in permanent AF suggests that it may be a symptom of that PLUS another "trigger" cause. Therefore I think you're searching for multiple, rather personal underlying, causes.

If you have experience of it, you'll know that root cause analysis is made significantly more difficult by the presence of multiple causes. You tend to need a lot of data. If you want to go there, I'd recommend keeping a diary of your symptoms and any possibly related events: your exercise, diet, sleep, pains, etc.

I wish you luck.

Steve

BobD profile image
BobDVolunteer in reply to Jdunk

In fact there is a growing wave of thought amongst some medics that it is a symptom but as you say of what is still unknown. It is such a mongrel condition and many people have no apparent causes. Of course something easy like binge drinking, being over weight, over exercising or being a fighter pilot (fast jets) are all causes and in many cases changing those things can "cause " it to stop or reduce. The problem is the slightly build vegetarian teetotaller who walks their dog every morning and evening has a private income so little stress etc, and who still has AF!

Do you/your mother not even take aspirin or any form of similar tablet?

Jdunk profile image
Jdunk in reply to jedimasterlincoln

We both take 81mg aspirin

Fish oil

CDreamer profile image
CDreamer in reply to Jdunk

My understanding is that aspirin has a higher risk - it’s not an anticoagulant but an antiplatelet.

seekerPNW profile image
seekerPNW

Hi jdunk,I have the same concerns but I take warfin,along with dig and metoprolol.It is very frustrating to hear from the cardiologist I will have to be on meds the rest of my life.I recently read a book called the”paleo cardiologist”. By Dr Jack Wolfson.He shares alot of good information about nutrition and supplements for afib and heart disease.The cardiologist I see doesn’t believe nutrition and food choices play a role in helping those of us who have to deal with it. I would tend to agree with Dr. wolfson and wish I could find a like minded cardiologist to work with.Best wishes for your heart health!

If I were you I would take anticoagulation as it massively cuts your stroke risk by at least two thirds ! Many doctors think it could be as much as 80 percent reduction in risk ! Believe me you really should not take risks with things like strokes ! The rest by all means try the lifestyle changes !

Jdunk profile image
Jdunk in reply to

Does the bleeding risk increase

as one ages when taking anti-coagulant?

in reply to Jdunk

It can but if you are healthy otherwise it should be low I take apixaban which is the lowest bleeding risk ! I will send you a link to look at !

BobD profile image
BobDVolunteer in reply to Jdunk

So long as one understands that anticoagulants are NOT blood thinners, the fear of bleeds tends to decrease. Blood does not suddenly start to leak out!

Inter-cranial bleeds can start for anyone if there is a weakness and or blood pressure is high. Blows to the head can cause injury which may result in bleeding where otherwise a mere bruise may occur and similarly any gastro intestinal weakness such as an ulcer or area of acid erosion can bleed. Since anticoagulation slows down the clotting process this can make such bleed more serious.

One reason why anticoagulation may be re assessed in older people is the increased risk of falling and possible head trauma.

in reply to Jdunk

Hi ! Have a look at sparctool.com that outlines the statistical benefits of anticoagulant and bleeding risks ! Just fill in your details and look at the results !

sleeksheep profile image
sleeksheep in reply to Jdunk

I just had a biopsy on my arm , nice little 5ml hole with a "leather punch"

next to no bleeding , they just inject adrenalin to stop the flow.

I actually bled more when the pre op. shaving nicked me.

IMO the bleeding risk is negligible on NOAC

irene75359 profile image
irene75359

My mother, who is 97 this year, has asymptomatic atrial fibrillation. About four years ago a new GP, after having a long discussion with my mother, took her off all her medication and my mother was happy with this, as she has now become extremely sensitive to all medication. However, she has had a series of TIAs, or mini strokes. The last one affected her sight and she struggles to read which is a significant loss for her.

So I completely understand (and share) your reluctance to medication, but I wouldn't forego the anticoagulants. Whatever the cause of your AFib a major consequence are blood clots leading to stroke. Why take the risk?

angiek profile image
angiek in reply to irene75359

Sorry to hear that your Mum has had sight loss affecting her quality of life, but I would say it's impossible to tell if your Mum would have had TIA's anyway. My Nana lived to 92 and had at least 3 TIA's in her last 3 years, my Mum is now 92 and has evidence of having had 'more than 5' according to brain scans, neither of them had/has AF.

irene75359 profile image
irene75359 in reply to angiek

You are absolutely right about the cause of the TIAs and I didn’t make it clear that we really don’t know, it could be one of those things that can happen when living to a great age. My sister is getting her large print books from the library which helps. She still won’t have a television in the house, we have all offered!

mjames1 profile image
mjames1

From what I've read, longevity figures are the same whether you take drugs or not for afib. The caveat being that your rate doesn't get too high for too long which yours does not appear to be. So even if you were in afib 24/7, as long as your rate is controlled you will live as long as your neighbor without afib. The exception is stroke risk which can be mediated by taking blood thinners. There are some studies suggesting they might not be as necessary for shorter episodes but you might be on the fence (or over) with your 12 hour episodes. You might want to do more research here. I'm struggling with this very issue myself, as my EP doctor wants a more aggressive medical or ablative approach while my cardiologist is more willing to let my short episodes go without meds. I'm currently on thinners until I sort things out a little more. These are not easy decisions, nor is it easy to get a consensus even from the medical community.

Jim

Jdunk profile image
Jdunk in reply to mjames1

Do you regularly see a cardiologist and and a EP?

momist profile image
momist

I have read some posts in this forum where certain members have found that doing a 'regular beat' form of exercise has corrected their AF condition, albeit temporarily until the next time. Things like walking or cycling where you are moving at a similar rhythm to that which your heart would normally use. This runs counter to the normal wisdom that elite athletes and those that over exercise are more prone to the problem.

Jdunk profile image
Jdunk in reply to momist

Might be worth experimenting with , to get relief while awake, although many times af appears at night while sleeping.

F-M-C-MM profile image
F-M-C-MM

It's absolutely wonderful jdunk that you manage to keep the A Fib under control but one must not forget the saying that AFib begets AFib, which is what happened in my case and is according to others on this site a factor to be considered. This translates into the need to increase medication or to seek an ablation to alleviate the more bothersome symptoms. As a result of ablation fibrosis was discovered, and I questioned if the fibrosis had caused the A Fib or vice versa. Currently there is no answer to that question, so I may have stumbled on the cause of my Arrhythmia accidentally,and may not have known if ablation wasn't a choice. I should add that having questioned my lifestyle, which is reasonably good, and in the absence of other medical causes, the Cardiologist/EP could not explain the fundamental cause of the paroxysmal arrhythmia, apart from genetics which is a probable cause.

Jdunk profile image
Jdunk in reply to F-M-C-MM

You bring up a valid point.

Vidlufc profile image
Vidlufc

Dear jdunk, don't know if this will help, but it is my experience. I went to hospital with af over Christmas, it came out of nowhere. I was blood tested for just about everything, thyroid, blood sugar, infections, kidney and liver function, chest ray, urine tests, all found nothing. Doctors put it down to lifestyle, drinking and smoking basically. So I gave up smoking, cut down drinking. Then it happened again a couple of months later, the reason I discovered was gluten intolerence! This explains why nothing was found in my test results. I have removed gluten from my diet and it's a different world, it's all about the vegas nerve I believe. Gluten gave me af and high blood pressure, I know it but my doctors dismiss it, they gave me amlodipine, perindopril and bisoprolol, all of which had a horrendous effect on me. I would point out this is all my own research and my doctor does not share my views, but I am healthier now than I have been in years. Hope this helps

Jdunk profile image
Jdunk in reply to Vidlufc

I have wondered about things like sugar, gluten, and Vegas nerve issues

Are you now a fib free or do you have a longer duration between a fib occurrences?

Vidlufc profile image
Vidlufc in reply to Jdunk

No more af to date, it's been about 6 weeks since i gave up, bp back to normal. Also my hay fever has disappeared! If you have gluten intolerence there will be other symptoms such as loose stools, explosive diarrhea, swelling of the stomach usually at the sides and front from the bottom of your rib cage, allergies, skin conditions, nausea, to mention the most common, but everyone is different, you may have some or all of the above!

Jdunk profile image
Jdunk in reply to Vidlufc

May I ask, what regimen you use to avoid gluten?

Vidlufc profile image
Vidlufc in reply to Jdunk

Basically just be aware of what it is in and avoid it! Read labels when shopping. A good guide is anything processedwill contain it

Jdunk profile image
Jdunk in reply to Vidlufc

Do you eat in restaurants?

Or prepare all your own food from raw?

Vidlufc profile image
Vidlufc in reply to Jdunk

No restaurants, no takeaway/fast food. Prepare most of my meals from scratch but do also buy from the free from range in Tesco or M&S

secondtry profile image
secondtry in reply to Vidlufc

Well done!

I have read a lot about the Vagus Nerve connecting the stomach with the heart and the brain. Gluten & sugar are the two big ones to decrease by 75%+. It takes time to change habits, build scratch cooking techniques, accept you are going to spend twice the amount on food and to find that food - e.g. don't buy gluten free bread from the supermarket, unless you want to jump from the frying pan into the fire.

It has taken me 4 years seeing several Alternative Practitioners as most regular medics just, at best, give you a patronising smile (no knowledge or training), trialling diet/eating times and finding the food sources.

AF is a tough one and I would urge all affected to start changing their diet and drinking/eating habits, for most it can only make you healthier, has no side effects if done slowly and could just be one part of 'a cure' for AF.

Lastly, interesting you think going gluten free has reduced your blood pressure, do you have a bit more info (personal or research) as my wife has high blood pressure and loves her bread?

Vidlufc profile image
Vidlufc in reply to secondtry

Thank you secondtry, that's kind. I guess to know where I am at and why you need to know the journey! As I said I went to hospital with af at the end of December, they tested me for loads and could not find a reason, I know why now of course. But this is the medical industry so I had a symptom, af and high bp which they thought was causing the af, standard procedure give me amlodipine, this within 20 minutes doubled my bp and heart rate! More drugs, bisoprolol to stop this. All ok, had a follow up 24 hour ecg and an echo heart scan, all healthy just change your lifestyle. Had given up smoking and cut down drinking, ate healthy but of course still gluten as I had not twigged at this point. My Dr wanted a 24 hour bp monitor so this I did as despite all my changes I still felt rough. The monitor showed high no, my diastolic was mostly 110 to 120! Dr straight away said to take perindopril. Took one that night, within an hour I was at a and e with rapid erratic heart rate, the monitor actually flat lined as it could not keep up with my heart. More bisoprolol to rectify it. Things calmed down, still felt a bit rough, then one evening I had a pizza and within 15 minutes explosive diarrhea, a vibrating tummy that swelled and at started. My son recognised the symptoms as his fiance is celiac, bingo! Removed gluten immediately, this morning my diastolic reading was 86

Vidlufc profile image
Vidlufc in reply to Vidlufc

Obviously it is more involved than that, from new year I removed cigarettes and caffeine completely, I only drink water. I have cut my sugar intake by about 80%. When I realised about gluten I researched as much as I could and then discovered the vagus nerve. I have added magnesium rich foods to my diet, probiotics and as varied fiber as possible. I still drink but only red wine or pear cider. Obviously a lot of my favouite foods and snacks are gone but it's a fair price to pay

secondtry profile image
secondtry in reply to Vidlufc

I would look at CoQ10 supplement as well. My high profile London Naturopath prescribed it as a partner with an Mg compound (incl Taurine & potassium & lots more), Mg relaxes, CoQ10 strengthens. His latest comments were you need to have a level in excess of the top of the normal range if you are an AFer. nb CoQ10 is I understand good for other things as well. Good luck.

Vidlufc profile image
Vidlufc in reply to secondtry

Thank you. Yes I believe ubiquinol is the way to go, especially as we age, coq10 has to be turned into ubiquinol by the body before it can be used and the body finds that harder as it ages. Good luck to you and your wife, man cannot live by bread alone!

djmnet profile image
djmnet

Ditto, jdunk. I also live with (tolerate) afib without medication (except anti-coagulant) and although it has become more frequent, it does not currently interfere with my QOL. I used to rest and wait it out, but now I just go about my daily business (including treadmill with increased heart rate). Your mother's history is encouraging to me. Thank you for sharing.

Jdunk profile image
Jdunk in reply to djmnet

Glad to here your able to live most normally

secondtry profile image
secondtry

Hi jdunk, thanks for raising this and drawing some good comment.

My take is that you need more action to stabilise the condition. There is plenty of stuff to try, if you are comfortable enough at present, before you hit the 'hard' pills and/or ablation route.

Diet, stress, yoga/Qigong, sleep improvement e.g. nasal strips at night, Mg & CoQ10 supplements, spiritual e.g. prayer

My take as to why AF is so confusing for all involved is: everyone starts with a different susceptibility due to our physical/genetic make-up and then on top of that with Lone PAF it can be triggered by a build up of a variety of factors contributing to a trigger point e.g. stress, over exercise, sleep apnea, gluten, too much caffeine/alcohol i.e. you could score zero on all bad habits but over exercise to cause AF or you could be just be half bad on all points leading to the same AF result.

The good news is that after 9 bad episodes a month with Lone PAF after taking all of the above mentions over a 4 year period, I have excellent QOL. I am still on Flecainide which stabilised me at the beginning but didn't make me feel well. My current thinking, if this continues, is in 2019 to start reducing my Flecainide very very slowly, starting by going down from 200mgs/day to 175 for 6 months.

Good luck and keep us posted on your results.

wheezybronch profile image
wheezybronch

I believe that doctors in general underestimate the effect of paroxysmal AF and it SHOULD always be treated, certainly if the AF is occuring every other day. I had a very successful ablation and also take 60 mg Tildiem twice a day to help as well. I had a 208 bpm and experienced flutter and AF, it transpired as an incidental finding whilst investigating a series of falls that I have had multiple lunar infarcts. So I am very glad that I had the ablation. I think that a referral to a consultant in a centre of excellence is most appropriate as a GP has a very limited time to diagnose and formulate a treatment plan.

exbcmc profile image
exbcmc

Aren’t you afraid of developing a clot and stroking out? I was under the impression that was the major risk....

Jdunk profile image
Jdunk

Have anyone tryed chiropractor for afib relief?

Sparky143 profile image
Sparky143

I'm with you, Buddy! there's an epidemic of a fib in this country with millions of people walking around with quivering hearts here in America and if you ask the cardiologist which I have done what is the root cause? Why is there an epidemic of a fib in this country? My doctor the first doctor I had was the head of cardiology at this hospital renowned hospital put his arms up in the air and says with an exasperated tone " Why is the sky blue? And walks out of the room. UNACCEPTABLE!!I had my first eighth episode in 2013 after eight years of their horrible drugs nine cardioversions that means being put under having my heart stopped and restarted nine times and then the bloody ablation that I let them pressure me into that happened in June which completely shredded me I feel my heart was altered and you just don't go burning tissue in someone's heart! And I can't believe that I allow them to do it I deeply regret all of it. I am a shell of the formally robust person that I used to be my heart is still a fibbing and beating too fast and now Im having debilitating fatigue ( bedridden mostly) inflammed lungs and severe shortness of breath.

my life is a living hell today and I lost everything. Most of all I've lost my sparkle and my smile and my confidence in my own body

I have very very good instincts I come from California I have a holistic natural point of you that is my belief system and the deeper I got sucked down the rabbit hole of cardiology the sicker I got there's a root cause to this melody and somebody needs to find out what it is.

without uncovering the recalls of any element there can be no cure. The cardiologist do palliative thinks they're not curing the condition because they don't know what causes it this is absolutely Stone Age as far as I'm concerned and I'm pissed and not in a good way.

I encourage you to trust your gut follow your gut instincts and the good track record of your mother don't give up have you tried homeopathy I'm thinking of looking into it. I don't know what country you live in but here in America true medicine ended the day that John Rockefeller funded the AMA. And the true physicians who are caring people and treating them properly with kindness care house calls herbs, enemas, sunshine, vitamins, minerals, exercise, Homeopathy and Naturopathy who were found still practicing were arrested and stripped of their licence to practice medicine. The Pharmacomafia took over and true medicine and healing have ceased to exist in medicine. Tye whole filthy system is corrupt and must be reordered from the ground up. did you know that if a doctor in America cures a patient of cancer without using chemo or radiation that they can come in with guns and arrest him? And strip him of his medical license? Did you know this? Well it's true. And they've also been known to snuff out the great ones as we know I say the sudden a mysterious circumstances surrounding the death of Dr. Nicholas Gonzalez one of the greatest positions of our time. Who YES....was CURING CANCER. They did the same thing to Royal Rife who had 100% cure rate with cancer patients not only did they destroy his life strip him of his license but they destroyed all of his research and studies.

I applaud your question and I support you 1000% in finding a natural cure the main thing is to get help identify the root cause of your condition I'll give you an example:

After consulting a number of different holistic practitioners including several medical intuitive it was shown to me that my heart itself was just fine nothing wrong with that heart the a fib was being caused by several factors. Number one severe lifelong anxiety. Number two The problem is coming from my neck. My cervical spine is unstable due to many accidents false concussions car accidents etc. I have trouble holding adjustments on my neck muscles are either too weak or too strong because my cerebral spinal fluid is not flowing optimally my medulla oblongata has been affected which intern has decreased the functioning of my parasympathetic nervous system. The parasympathetic nervous system governs the electrical systems of the heart.

Despite weekly trips to the chiropractor physical therapy massage therapy trigger point therapy etc. I have not been able to stabilize my neck after 7 1/2 months in steady rhythm my heart went into a fib about a month ago and now because they messed with my heart tissue they burned my heart tissue I can't believe I let them do that… My heart is behaving very strangely and I don't even recognize it as my heart the patterns are completely different because they've been altered in a way that is not good

These doctors think they can just go in there willy-nilly and start burning the crap out of your heart tissue who the hell do they think they are? violating the most sacred organ in the body or connection to God I can't believe I fell for that. And I only fell for it because I was desperate and those doctors are not giving me the answers I am I want it but I was moving into congestive heart failure then they just said you could die from this so I caved but with that a fib came back with the accompanying tachycardia upon exertion it left me feeling utterly hopeless and very very angry.

I would hurt everyone and anyone who suffers from a fib to seek out answers and if the cardiologist can't provide them seek out answers from more lightened doctors who look deeper than just symptoms Western medicine is completely useless as far as I'm concerned unless you're in an accident and you're dying and they can save your life.

Wishing everyone the very highest sorry about the long post but I feel very passionately about the subject and it's the sad trail that I walk.

Sparky143 profile image
Sparky143

Please forgive typos. I talked this in fast. As you can see, this is a subject near and dear to my 💖 and I am deeply frustrated. Your very sensible post got me going and so I thank you and encourage you to follow your very good instincts.

NatwayTexn profile image
NatwayTexn

You may want to check out Bambi65 and MummyLuv on here… My husband is also a patient of Dr. Randle Wolf and is scheduled to have the Wolf Mini Maze in Houston, but MummyLuv had the procedure in the UK! Prayers for complete healing ❤️‍🩹

MummyLuv profile image
MummyLuv in reply to NatwayTexn

Thanks Natway, I made the decision to have surgery as I didn’t want to be on medication or blood thinners for life. I’m only 3 months in but so far so good, NSR since surgery. For me this was the right decision and I did a happy dance at 8 weeks when all meds were removed.

I wish your husband a speedy recovery and long term NSR.

NatwayTexn profile image
NatwayTexn in reply to MummyLuv

Thank you!! We just got approved today and we’re over the moon!! His procedure is 8/31🙏🏻

NatwayTexn profile image
NatwayTexn in reply to NatwayTexn

So happy to hear all is well with you and blessings for continued great health!❤️‍🩹

MummyLuv profile image
MummyLuv in reply to NatwayTexn

That is quick! He’ll be through in no time :)

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