Symptomless Afib: I was diagnosed with PAF... - AF Association

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Symptomless Afib

pusillanimous
pusillanimous
56 Replies

I was diagnosed with PAF 3 years ago by chance. I was symptomless and still am. My Cardio prescribed 2.5mg Bisoprolol and Xarelto 20mg per day. I even went for a routine visit to the Cardio, completely unaware of the fact I was in AF, he said he could do a cardioversion if I liked, whilst I was there or just carry on with the medication. I opted for the cardioversion, which was quick and easy, but carried on with the tablets. Subsequent visits have been fine. My question is, if I have no symptoms, how will I know I'm in Afib, without constantly checking my HR?

56 Replies
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carneuny

G'day,

Well ..... I was diagnosed with paroxysmal AF in Jan 2010. I eventually identified food as the trigger. I addressed the food issue and it all subsided by April 2015. Since then I have had only one AF event (that I know of) in Feb 2018.

My write up in a letter from my Cardiologist to my GP stated that as a result of tests etc done during 6 days in A & E and the cardiac unit I could at times be in AF and not know it.

The day I was diagnosed I had no cardiac symptoms at all except erratic blood pressure. I actually felt I was going down with 'flu.

By checking my pulse and or strapping up to my blood pressure machine or looking at HR on my Garmin Tracker watch is the only way I can really tell ... and of course from my general well being.

In Feb 2018 when I had the AF event I was asleep in bed about 02.00 hrs. I'd been lying on my left side. It lasted about 5 hours and I got it tracked on my portable ECG device AND my BP machine. Then it disappeared never to return however my BP took another 21 hours to return to normal.

So as far as I can see there are 3 ways - pulse, ECG device, and home BP machine. All of course run the risk of one becoming obsessed with checking.

On my AF day in Jan 2010, my BP started off at 152/80 ish, behaved both illogically, erratically during the day and bottomed out at 76/50 .... that was my 'Apollo 13', moment when I rang my GP, got an immediate appointment and ended up in A & E within the hour.

Hope that helps .......

John

pusillanimous

Thanks John, I was at first obsessed with checking ny HR and blood pressure, I was so bad I had two machines and I would top that off with my phone app. I decided to start behaving sensibly and stop this nonsense, so I seldom go through that ridiculous performance, and make sure I take my medication . Mine is definitely a defective gene, as my 3 sisters also had it, and probably my late father too, but he was diagnosed with Angina. I must add that my father's death had nothing to do with his heart, but from prostate cancer.

marin5
marin5
in reply to carneuny

what is PMR??

consul
consul
in reply to carneuny

John, it is very interesting to note your comment that your AF you eventually attributed to food as the trigger. I have heard of such a relationship before. Would you be kind enough to share ith me/us as to what foods tou identified as the culprits, at least in your case. Many thanks in advace, Gerry, Australia.

carneuny
carneuny
in reply to consul

Hiya Gerry,

Its a bit of a long story, but not as long as War and Peace !! :-)

Give me a few hours and I'll put something together for you. It's as important for you to get the story line as much as the food plan which I have adopted.

Good to see Oz doing well in Cricket ......... oooh! for those days (and sometimes nights) at the SCG :-)

John

consul
consul
in reply to carneuny

Look forward to it....all the best.

baraba

I am also symptomless when in AF, but funnily, I am in AF mostly at night. During the day, everything is OK and I can be fully loaded, both physically and mentally. People having symptoms and being diagnosed with AF may present only a small percentage of all the crowd suffering on it and never being diagnosed because of no symptoms. In my humble opinion, up to 50% of the elderly population may suffer on cardiac arrhythmia, at least from time to time. You are lucky to be symptomless, because the symptoms may be very, very debilitating.

BobD
BobDVolunteer

If you are asymptomatic why do you need to know? Any and all treatment is only for stroke prevention and quality of life so since your QOL is fine and you are protected by the Xarelto just get on and enjoy life. There are SO MANY people here who would love to be in your shoes I'm sure.

Out of interest did the DCCV make you feel any better or did you not notice the difference?

If you ever become symptomatic trust me when I say you will know!

pusillanimous
pusillanimous
in reply to BobD

Yes Bob, I'm luckier than a lot of the people here and as you say, I should just get on with it and stop feeling sorry for myself! The DCCV made me feel no different at all!

Primetime165

That's what I do. Take the medication and forget about it. It works a treat.

Melbuckton
Melbuckton
in reply to BobD

Because af causes cognitive impairment and dementia

BobD
BobDVolunteer
in reply to Melbuckton

Lack of anticoagulation may but AF no IMHO but that is not the point under discussion here.

Melbuckton
Melbuckton
in reply to BobD

Search for af and cognitive impairment and dementia.

You will be amazed

pusillanimous

But the studies seem to point to lack of anticoagulation, which Bob mentioned seems to be the problem. So it is the untreated undiagnosed people must be the ones at risk. But if you read all the papers, there is a whole litany of causes of dementia.

Melbuckton

Yes af is just one of many causes of dementia.

Your comment is very astute. One cardiologist presented at an af conference a paper titled should we treat af before it's discovered.

What he meant is find those you mention the undiagnosed and hence untreated. They are all heading for cognitive impairment and dementia faster than if their af was treated. But they don't know. I didn't until I had an ecg for an operation nothing to do with my heart and af was found. Now I have the opportunity to get out of it I hop...

There is no way the NHS could treat all af patients and of course you eventually get the same level of cognitive impairment etc. only hopefully much older if you don't have af!

pusillanimous

I would imagine the only way to treat the problem would be to view it like cholesterol where people are virtually (from what I have read, as I'm not under the NHS ) are prescribed statins .,so there would be a situation where along with statins people would be given anticoagulants, which would be a very expensive exercise

Melbuckton

True. It's amazing how complex this all is. Unfortunately essential reading because the gp cannot make all the decisions for you due to the nature of the problem and solutions.

pusillanimous

Here in SA the average GP has limited knowledge of the condition, not surprising as they are confronted with so many ailments on a daily basis, for that reason if an ECG shows an Afib pattern, they prefer to send you off to a cardiologist, with whom they can work hand in hand,

Melbuckton

Understood. Lucky in uk can refer initially to gp

pusillanimous

I'm English, but as stated live in South Africa, but from what I understand from my family in the UK, there can be a long wait to see a specialist if reliant on the NHS.(this happened to several of my relations) Here with private practitioners and hospitals , as happened to me, I was diagnosed by chance when I went to my GP for another reason (apt. same day) I must add that I did not consult her for anything to do with my heart - I had been pricked by an aloe plant in the garden and the wound was getting infected , so I saw the GP that morning, and she prescribed an antibiotic that did not agree with me and I could not stop vomiting, I phoned the surgery that afternoon and was told to come immediately, she examined me did an ECG because of my elevated HR, and she was unhappy with the tracing,so she sent me to the specialist that same afternoon. By the time I got to the Specialist, I was back in NSR, but he admitted me and kept me in hospital for two days (it was a cardiac hospital) so I could be monitored.I do not quite understand your statement.'Lucky in UK can refer initially to gp'.

Melbuckton

Wow you're lucky to be alive.

Re gpd you said if an ECG shows an Afib pattern, they prefer to send you off to a cardiologist,

My gp is treating me with drugs after examining the ecg. Cardiologist not involved yet.

SandiBee

I have never taken statins as I have "normal"cholesterol levels and it would be crazy to go ahead with giving it to everyone just because some crazy doctors ( no doubt with links t the drug companies) said some years back that everyone over 40 should be on them. Various friends have had very unpleasant side effects from taking them when it was totally unnecessary!

Samazeuilh

Regrettably that is one of the major worries. This doesn’t happen overnight but can occur over time. Medical personal, even cardiologists , have seemed reluctant to discuss this when I have raised it? What can be done to prevent or impede this? Has anyone noticed this effect after having AF for some time?

Melbuckton

You would assume if you noticed some degradation it was old age. Eg oh where did I leave my glasses. It has the same effect as old age only years earlier!

There is not just a reluctance on this forum to discuss it but quite strong bias against in my opinion.

Solution is simple come out of af asap and stay out.

But medically it seems the heart quite likes being in af and treatment fails and has to be repeated etc.

My current estimate is that you lose about 5% of your cognitive abilities between normal and the start of the path to full dementia per year in af if taking anticoagulant.

However this is based on only a week or so research so has uncertainty.

I am spending much of today on this.

That's not odd as I am a retired physicist and enjoy a mental challenge at 73!

Fortunately the medical papers are not too difficult and if get stuck can search for help on key words and phrases etc.

Thanks for your interesting comments!

Thomas45
Thomas45
in reply to Melbuckton

I thought you admitted that you were not medically qualified.

Melbuckton
Melbuckton
in reply to Thomas45

I've just said:

Fortunately the medical papers are not too difficult and if get stuck can search for help on key words and phrases etc.

Mel

Auriculaire

You do not need to be medically qualified to read a lot of scientific research and in particular medical papers. Just reasonably intelligent and persistent. What is more there is quite a lot of scientific research at a very complicated level ie genetics , biochemistry and cell biology that is beyond your average GP. If you have qualifications in another branch of science it is easier than if you have no scientific education at all.

Thomas45

That's true, BUT no lay person can hope to keep abreast of all AF research throughout the world. As you say GPs have to rely on specialists. I had a very rare reaction to Bisoprolol, which sadly for me is replicated by other beta blockers so I can no longer take any beta blocker. When I told the first GP I saw at my local medical centre said the practice had 800 people taking beta blockers and I was mistaken in thinking the side effect (painful urticaria) was related to my taking a beta blocker. I was however referred to the doctor in the practice who specialised in dermatology who recognised it straight away as being caused by a beta blocker. As I was being weaned off it I had another side-effect, exacerbation of asthma, which meant I spent 2 nights in hospital. The beta-blocker was originally prescribed by a hospital doctor when, during an operation to remove my appendix, my heart rate rose to overt 200bpm.

Auriculaire

The first time I had an afib attack that was so scary I called an ambulance I was kept in hospital for 4 days. The nurse appeared with my Bisoprolol once the drip was discontinued and a preventative asthma spray. They knew I had asthma but still prescribed the Bisoprolol! She even said I had to use the spray as the Bisiprolol could make my asthma worse! After a week on the drug I felt like a zombie and told my GP that I wasn't sure I wanted to live if it meant feeling so awful. He immediately agreed that I could reduce the dose. The cardiologsts here seem to go in for a one size fits all starting dose of 5mg. I think docs on the whole are reluctant to acknowledge the side effects of the drugs they give out. If they did they might start to question a bit more the risk / benefit profile of a lot of them and if they are really sticking to the "first do no harm " principle. Did the urticaria get better?

Thomas45

Yes, the hospital records stated I had asthma, and that I'd had allergic reactions to three antibiotics, two bisphosphonates, and a new anticoagulant,, but still prescribed Bisoprolol. I now take 3 antihistamine tablets a day, but some rashes still appear.. I can't eat acidic food such as tomatoes, grapes, bananas, citrusf ftuits as these cause rashes..

The beta blocker somehow changed the pH of my skin and despite eating lots of alkaline foods it won't revert to a balanced pH.

Auriculaire

That's terrible . I think that on the whole pharmaceuticals are poisonous for our bodies. Even though sometimes based on substances found in nature they are tweaked and often contain natural stuff that are actual poisons. For instance the core molecule ring of fluoroquinolones is closely related to that found in anti malarials that derive ultimately from chinchona bark. The anti cancer drug Taxol from yew. Even if they help in one respect the side effects can be devastating.

FlapJack

Can’t add much other than you are a lucky bu**er so relax and make the most of it. You are anti-coagulated and it’s important you stay that way......

pusillanimous

Yes Flapjack, I guess most of the people who join this group do so because they have unpleasant symptoms, and there are many like me walking around who are symptomless,but have not by accident been diagnosed. so really I'm lucky, I live in South Africa and have private medical treatment, so there is no waiting for an appointment with my GP, although there is a longer wait for a specialist, but the GP can speak to him on the phone, do the ECGs, so I'll just be grateful.

FlapJack

Best way.....it’s not impossible for folk to worry themselves into feeling unwell...

KMRobbo
KMRobbo
in reply to FlapJack

I agree to that. Flight or fight response is not helpful for your own heart!

Thomas45

I've been in persistent AF for about four or five years, after twenty of Paroxysmal AF. The chances of my heart deciding to go back into normal sinus rhythm are nil, so I just get on with life.

I may have symptoms but as I have other ailments who knows which symptoms are caused by which ailments. Having persistent AF doesn't stop me from doing anything that I couldn't do before I had AF, apart from drinking coffee or eating soya-based products.

pusillanimous

Does even decaf coffee even affect you? I drink decaf, because I thought it was better for me !!!!!!

Thomas45

Yes, it's not the caffeine which affects me but some other part of coffee.

pusillanimous

That's interesting, from what I've read chocolate is another trigger, and yet at the same time you read that dark chocolate is good for the heart, also red wine is supposed to be good for the heart, but alcohol can trigger AF - it's all very confusing!!

4Laur
4Laur
in reply to pusillanimous

good Day all! It’s the chemicals they use in the process. All Decaf has some caffeine & chemicals used in the decaffeination process.

In my opinion AF is affected by anything processed...foods etc.

Thomas45
Thomas45
in reply to 4Laur

That may be the case, but caffeine in other drinks, including cola, has never affected me. Coffee has, so I've not had a drink of it for 12 years. Nor do I eat anything flavoured with coffee, or where coffee is an ingredient.

Pedro99
Pedro99
in reply to Thomas45

Almost the same timing as myself, 22 years paroxysmal with 6 cardioversions in first 4 years. Then ablation that lasted 6 months, paroxysmal until 4 years ago, then persistent with vague symptoms. I also have other ailments that confuse the symptoms but carry on regardless.

SandiBee
SandiBee
in reply to Thomas45

What's wrong with soya based products please? I have paroxysmal but as I do not have dairy I have soya based milk and yogurt and occasionally tofu. I didn't know these were a no no for AF.

Thomas45
Thomas45
in reply to SandiBee

People react to foods differently. There's nothing wrong with soya-based products for millions of people, but my body reacted to them by going into fibrillation. Many people find alcohol and caffeine are triggers but they're not for me. So my advice is to enjoy your tofu and spya milk, etc, and not to worry.

SandiBee
SandiBee
in reply to Thomas45

I gave up the very small amount of alcohol I used to have- a small glass of wine with evening meal as was told that alcohol and black tea and coffee which I hadn't drunk much for years were out! I guess we are all different and advice is for those very few "average" people!

Restcfo1

Good question. I was in symptomless PAF until I went into persistent AFib and caught it when my pulse started increasing on Blood pressure monitor. I Subsequently had an ablation and now am back in PAF which I easily determine by checking my pulse on my iWatch and my heart and sleep apps on my iPhone. I can then confirm with my Kardia device and Kardia app on my iPhone. All my Afib episodes seem to be triggered by either alcohol, excessive exercise, sometimes eating large meals, or a combination as assisted by a healthy dose work stress. I am a CPA! Steady monitoring helps you identify your triggers and in my case administer a pill in the pocket medication remedy. I don’t want to be be on daily drugs, so I prefer this solution. In my opinion, the main reason you need to monitor it is so you don’t go into persistent Afib. Left untreated in persistent Afib, you could end up in permanent Afib which is not good for some of the reasons mentioned above.

pusillanimous

So I presume you are still taking an anticoagulant? I'm not sure if it is a good thing for me to do frequent monitoring as I suffer from anxiety, and anxiety for me is a trigger! so it's a sort of 6 of one and half a dozen of another for me, as I tend to become obsessive - oh what a tangled web we weave when we start overthinking things!!!

Restcfo1

I am not taking an anticoagulant other than baby aspirin, but will start at age 65. Monitoring is a personal choice, but with knowledge you can alter your behavior to reach the best outcome possible.

SandiBee

I know when I am having an AF episode but if you really don't have symptoms and want to know and have a smart phone (I didn't but getting diagnosed has led to me moving into the 21st century) you can get an app and a Kardia (around £90-£100) and check your heart rate on it, on waking and a few times in the day. Try not to get addicted to it but it does tell you when you are in AF (though it always says "possible AF"). It also identifies bradycardia (when your heart rate is under 50, which mine sometimes is) and tachycardia (which mine once was!) Other than that is comes up with "unclassifieds" which are sometimes ectopics or some electrical interference, but it hasn't got around to identifying them yet!

Magson

Everybody is different. Some notice AF and some are not aware it's happening. I could tell you when mine started and when it stopped. To the second. After many years of these "palpitations" which may have occurred only every say 6 weeks- they became more frequent and hence the eventual route of cardiologist, EP and ablation one year ago. And I am talking a 20 year period. AF loves high blood pressure,alcohol and stress. In my opinion. But these can be controlled. I could not tolerate Bisopropol- so many side effects. Glad that's gone. Also Flecainide has gone. What you may want to consider is a Kardia monitor to use with your smart phone. This will indicate and record your AF which can be emailed to your medical team. It's all about quality of life at the end of the day. Ablation isn't for everyone But it worked for me and I have got a new lease of life. AF free for 9 months. These are just comments from my experiences and I am not medically trained.

Bye the way, spent a happy 27 years in SA . Returning to UK in 2011..

Go well.

whiteface

I'm in permanent AF which is also symptomless. I take nothing (on the advice of my cardiologist). I live an active life (cycle over 2000 miles a year and go walking on the moors at least once a week) ignore the AF and fully enjoy life. I can tell you more if you like, and you may want to check my previous posts. (Most people on this site don't get symptomless AF so I had to ignore a lot of the advice offered here.) I suspect a lot of people are like us.

pusillanimous

That is interesting - so your cardiologist does not even recommend an anticoagulant? My son, as well as coming from a family obviously prone to the condition is a competition canoeist - so is his cardiologist! Apparently canoeists are one of the groups most prone to AF, anyhow, he had an ablation twelve years ago, has regular checks and is considered 'cured' he takes nothing, but I am always concerned when he tells me he is cured, as I've always thought it to be incurable!. I often wonder if there are more subcategories of the condition that we are unaware of, and have not yet been given a name by scientists,

whiteface

He actively recommended against and anticoagulant. That's because if you take an anticoagulant you increase the risk of bleeding, and my cardiologist was clear that at my age (61) the risks of that outweigh any potential benefits. Has anyone ever tested your blood for clotting potential? Plus the case for stroke is also not as strong as you are lead to believe. I checked the Framlingham study which is the one usually cited and frankly it is very poor science. Check out my posts on that topic if you'd like to know more. I'm afraid ablations are also often a false promise you'll see how many people have several -- they "wear off". Live healthy it's the best way.

pusillanimous

Gosh, I think the anticoagulant story is a book of many pages - where do they magic up the age of 65 to be the day that you need an anticoagulant? just as they suddenly decide that there is a certain age where women no longer need pap smears and mammograms, when in fact the risk for cancer increases as you age. Like so many things it's a controversial subject, most cardiologists will recommend an anticoagulant, but they obviously will tailor the treatment to the patient. I have a full blood count annually, and although I have been taking Xarelto for 3 years, my last one 5 months ago was described by my cardio. as 'pristine' - so maybe we should wait for some more updated studies involving a more diverse section of the population than the Framlingham!

Travelman1957

You should feel your heart beating irregularly especially when lying on your back or front. If you are not symptomatic thats the main thing!!!

pusillanimous

never felt that Travelman, sometimes I think my heart is not beating at all and I must be dead!

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