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Atrial Fibrillation Support

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stoneyrosed profile image
87 Replies

Hi everyone, i have just purchased a one lead kardia device on the advice of my cardio. I have been put on 100 mg of flec a day 2x and 1.25 of Bisoprolol one in morning. Meds have been shuffled around a bit because of ongoing AF. I have used kardia 4 times in last couple of days and each time it says possible AF. I am extremely worried I have or am going into permanent AF as i am now having symptoms everyday. Been on flec about 4 weeks, do you think the flec could be making me worse? The cardio told me to persist with it for a while. Also on the list for an ablation and now im worried that the worsening covid situation means i have little opportunity of this happening any time soon. My life is such a non event at the moment because of my symptoms. Any advice or encouragement will be greatly received thank you.

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87 Replies
CDreamer profile image
CDreamer

Hi and sorry you are so worried. The Kardia ECG will be extremely helpful for your cardiologist/EP however if you are worrying when you keep seeing Possible AF this will only add extra stress for your body to cope with and possibly increase your symptoms so limit your use or better still, desist from using the Kardia. I would suggest you take one reading, once a day for your cardiologist and then put it away and forget for the rest of the day.

Stress is the biggest antagonist of AF so find some way of switching off the mind and relaxing - deep breathing exercises - take Long, Slow, Deep breaths into your belly and even longer out breaths, again using the belly. Focus entirely on your breathing. Use distraction - focus on what you CAN do rather than fret on what you can’t. Do anything you enjoy - read, music, watch film, art etc. Walk in green nature - every day.

You will need to talk to your cardiologist about your treatment regime as we all react differently. Sometimes a drug loading prior to cardioversion or ablation assists and helps maintain the conversion to NSR. Cardioversion failed for my husband so ablation was not an option but he continued to take Amiodarone and it took a few months but he converted back to NSR and has remained in NSR now for 18 months.

Many people who do progress to Permanent AF report that their body adjusts and they find they are much less symptomatic than when AF was Paroxysmal. I think we all have to come to terms with life may never return to what it was as we age and I for one have certainly had to take a back seat on activities since AF started. After 12 years I finally gained relief from AF by Pacemaker insertion - not a common treatment but a last resort but it worked!

Keep on keeping on and keep on chasing your treatment options. You do need to be an active agent in your own recovery so take all the actions you can.

Best wishes CD.

stoneyrosed profile image
stoneyrosed in reply toCDreamer

What a lovely reply, thanks so much for the advice. I did used to love cycling and going for walks but a couple of months ago it seemed to trigger the AF and now i am worried to do it again. I do think that stress and worry makes it worse of course your right. I cannot seem to get a consistency of not worrying everyday, thanks so much for your help and will take it on board 😊

Physalis profile image
Physalis in reply toCDreamer

From the time I started to keep records I took an ECG every four hours, put it on a spreadsheet and turned it into a graph. That gave me a very good idea of what was happening. Four times in two days is just not enough especially if they are all coming up as possible AF. What was the hr on those four readings?

stoneyrosed profile image
stoneyrosed in reply toPhysalis

My readings were 133 b4 meds then 91. 45. 47. The advice before was not too obsess about the readings, i am not a cardiologist so i think it is better to leave the readings to them. Thanks so much for your reply.

Physalis profile image
Physalis in reply tostoneyrosed

I'm sorry if you're happy to do that, that's fine. However, you say you are worried you are going into permanent AFib. With reading of 45 and 47 then you can't be and I can't see how all four would come up as possible.

I think that, if I had left it to the doctors, been afraid to look at the ECGs too closely, none of us would have realised how serious it was and I wouldn't have had an ablation.

I can't see that keeping simple records of your hr and results of the Kardia readings is exactly being obsessive.

When are you next seeing your cardiologist?

CDreamer profile image
CDreamer in reply toPhysalis

I think everyone reacts differently. The Kardia readings are for the doctor but if you are a worrier then it may not be helpful to the patient when there is uncertainty.

The trouble is that you do need a cardiologist to confirm AF - the app will say Possible AF if it is AF but doesn’t confirm AF and that can be unsettling for many people. We are all so different.

Physalis profile image
Physalis in reply toCDreamer

I didn't need a cardiologist to confirm I had AF. With the Apple watch it can say Atrial Fibrillation as long as the hr is below 120, above that you would know anyway just by looking at it. If the hr is, say, 130 and the ECG shows an irregular heart beat it would be obvious.

ecg-educator.blogspot.com/2...

and Sanjay Gupta did a little video on it. Not very detailed though and he recorded it five years ago.

youtube.com/watch?v=hDnvcIr...

Physalis profile image
Physalis in reply toPhysalis

That didn't seem to work, this should

facebook.com/yorkcardiologi...

stoneyrosed profile image
stoneyrosed in reply toPhysalis

I used to get paroxysmal af may be once a month now i get them everyday so thats my worry about it turning into permanent, the low readings were just after taking beta blocker. Iam not fully understood about how i should use the kardia but i am sure the cardiologist will advise. Thanks

Physalis profile image
Physalis in reply tostoneyrosed

I'm sure you will get lots of advice from the people here who have been using the Kardia for a long time. I would hope the cardiologist would tell you to take regular recordings so that you would be able to tell him how often your episodes occurred and how long they lasted. Once you do that you will know where you are and not just be guessing and worrying that you will be in permanent AFib.

One thing, the beta blocker never acted that fast with me and the low readings are because you are in sinus rhythm and the beta blocker is lowering your heart rates both high and low. IMHO!

stoneyrosed profile image
stoneyrosed in reply toPhysalis

The two low readings came up as bradycardia sorry i didnt fully explain

baba profile image
baba in reply toPhysalis

"With reading of 45 and 47 then you can't be"

Why not?

Physalis profile image
Physalis in reply tobaba

Well they weren't were they? The Kardia said bradycardia.

AFib is a fast and irregular heart beat. The way I see it is that the underlying sinus rhythm is joined by other electrical signals which drive the heart to go faster.

Ablation effectively kills off as many of these other signals as it can.

I have found it interesting on this forum that there are some people who are in permanent AFib but the drugs they are taking push the rate down to normal levels of perhaps below 100 bpm.

Jalia profile image
Jalia in reply toPhysalis

Whilst AF is usually fast and irregular it is possible for the heart rate to be slower and still show AF

Robinson1 profile image
Robinson1 in reply toJalia

Yes that is my understanding too. Prior to my ablation four years ago, my heart rate would be anywhere from the low 40s up to the 150’s while I was in Afib

baba profile image
baba in reply toPhysalis

"AFib is a fast and irregular heart beat."

AF is always irregular but not always fast.

I am in permanent AF. Heart rate generally between 60-80, goes higher when exercising.

I'm not any medication apart from Apixaban (anticoagulant).

Physalis profile image
Physalis in reply tobaba

That's interesting I've just done an ECG and looking at it I can see that my hr is not entirely regular but I wouldn't class that as AFib? It's 77. I'm on Apixaban only.

Physalis profile image
Physalis in reply tobaba

What symptoms do you get?

baba profile image
baba in reply toPhysalis

None now apart from a bit breathless when exercising.

But I’ve been through the whole catalogue of symptoms, but never very fast, before Permanent AF.

Physalis profile image
Physalis in reply tobaba

I can't say I understand this. Before I joined this forum I thought PAF was relatively simple and people had AFib like mine. I imagined that other people had longer or shorter periods between episodes and they were in AFib for shorter or longer times and I suppose I thought that the main symptoms were feeling breathless or light-headed. But it seems that it's a lot more complicated than that.

You're saying you're in permanent AF with hr of 60-80, no drugs and virtually no symptoms. Why did you have a range of symptoms while you were in PAF but not in persistent AF. What does your cardiologist say? How do you know you're in persistent AF?

baba profile image
baba in reply toPhysalis

Permanent AF is often, not always, less symptomatic than PAF.

I don’t have a cardiologist at present. I was discharged when I decided I didn’t want an ablation or Amidorone.

I know I’m in persistent AF from hospital ECG’s and Kardia recordings. Confirmed by EP and cardiologists.

Physalis profile image
Physalis in reply tobaba

Well I just think it's odd that they should consider giving you Amiodarone which is quite a toxic drug or an ablation when your heart rate is in the normal range. Perhaps you're in the states.

Also that the Kardia should say AF - but I am very new to all this so what do I know!

baba profile image
baba in reply toPhysalis

You make a lot of assumptions. I was VERY symptomatic at that time.

I’m not in the states.

Physalis profile image
Physalis in reply tobaba

Sorry, I didn't mean to offend you but I was just trying to get my head around what you were saying.

Are there many people on this forum with AF, heart rate within the normal range and not on drugs?

CDreamer profile image
CDreamer in reply toPhysalis

You would need to take a poll to answer that question but I would imagine there would be quite a few. I no longer take drugs but the pacemaker seemed to do the trick for me. Drugs made me a lot worse, ablation helped but didn’t last.

I found that the higher heart rate when in AF was mainly in the early years. My HR would normally stick at 90-130 in latter years, whereas in the early years 180-200.

Buffafly profile image
Buffafly in reply toPhysalis

I have recently had an episode of AF (confirmed in hospital) with rates varying between 80 and 160. I take a very low dose of medication. Slow AF is unusual but not impossible. Kardia is not infallible - near the end of my episode I was having double ectopics every few beats and it interpreted those as AF.

AF experience varies a lot from person to person 🙂

Physalis profile image
Physalis in reply toBuffafly

I've had those double ectopics and the watch says NSR. I did wonder about that but now I'll look for missing P waves!

Buffafly profile image
Buffafly in reply toPhysalis

I think Kardia goes by RR interval, not p waves, so a lot of ectopics confuses it.

CDreamer profile image
CDreamer in reply toPhysalis

Screening in GP waiting rooms in the UK has shown many people in AF which they were completely unaware of. Bob was part of that programme a few years ago and I seem to remember he found at least one person in his local surgery. The latest discussion in the US is on the value of screening for none symptomatic AF to reduce strokes.

Physalis profile image
Physalis in reply toCDreamer

I think people buy a Kardia because they know they have a problem. With things like the Apple watch people can screen themselves and it has led to a lot of people finding out they have AFib and getting anticoagulants. This I am sure will prevent a lot of strokes so it a good thing and with millions being sold the effect will be considerable.

There seem to be very few YouTube videos on these screening devices because doctors seem not to know what to do with them. Sanjay Gupta who produces loads of videos has only posted one, on the Kardia. However, he did one where he said that young people and those with lone AF probably didn't need anticoagulating.

queseyo profile image
queseyo in reply tobaba

Hi baba, Interesting your post. I'm on many medication and as from a couple of weeks on AF with high RHB (never under 60s). Now has gone down to below 50s and hard to find my pulse, very weak. Hopping my Cardiologist contact me soon after getting my FBT results and letter from my GP...I'm worry my heart may stop all together any time...hopefully NOT

Ducky2003 profile image
Ducky2003 in reply toPhysalis

I have been in AF with a slower heart rate, not often as I have RVR usually with mine, but certainly on quite a few occasions. My cardiologist said that's why a lot of folk don't know they have AF as it's not all about the rate.

Physalis profile image
Physalis in reply toDucky2003

Have just read this

"AFib with RVR is a description of atrial fibrillation. RVR stands for rapid ventricular rate, usually defined as a heart rate of over 100 beats per minute. It basically means that atrial fibrillation is making your heart go too fast. In contrast, controlled ventricular rate or CVR means that the heart rate is controlled and typically less than 100 beats per minute."

I had AFib with RVR. I understood it to mean that although my atria were beating fast, my ventricles were keeping up with them.

So when you are all talking about AFib and a low heart rate you are probably referring to AFib with CVR. In other words your atria are going fast but your ventricles are going at a normal rate.

We live and learn, that is if I've got it right!!

Ducky2003 profile image
Ducky2003 in reply toPhysalis

Yes, that is my understanding too. I was just explaining that sometimes I'm in AF with a "normal" heart rate.😊

queseyo profile image
queseyo in reply toPhysalis

Reading your post make me relax...on AF for many days with high HR, from yesterday down to below 50s, some time, but still irregular...in partner...a few regular (change gear) then faster and irregular. I call it a "regular irregularity"...

cuore profile image
cuore in reply toCDreamer

When you say "Cardioversion failed for my husband so ablation was not an option ," are you saying your husband did not return to sinus rhythm via cardioversion? Then after a few months of Amiodarone, he converted to sinus rhythm and has been in sinus for 18 months!

That's fascinating because cardioversion did convert me to sinus rhythm, albeit for 5 days, the last one. On a few months of Amiodarone, I felt, made me go back in arrhythmia, I felt. When changed to Flecainide, I stayed in sinus for a few months. So, I appeared to have acted opposite to your husband.

How long was he persistent and how many months on Amiodarone?

CDreamer profile image
CDreamer in reply tocuore

He was persistent for about 6 months and was going into heart failure - EF of 35%. Angiogram showed clear arteries and scans aortic stenosis. It was unclear if AF caused the stenosis or stenosis the AF so it was decided best course of action would be to attempt to convert to NSR. Cardioversion x 3 gave 7 seconds of NSR but because of his age, then 85, it was a choice between ablation or Amiodarone. IT was then decided that ablation would cause long recovery with no guarantee of success so he would continue with Amiodarone. 2 months later he suddenly flipped into NSR and EF returned to 50%. He continues on Amiodarone, thankfully with no side effects, still and is still in NSR.

AF is such a mongrel condition and in MHO it is NOT one disease, may be a symptom rather than stand alone and ablation is very helpful for younger (under 50), relatively fit people with no other conditions, the older you are, the more co-morbidities then the less likely you will be have a lasting result. In the UK cardioversion is often offered to see if ablation may be affective. In my husband’s case, it was thought it may be possible, but unlikely to be lasting. Risk:Benefit just didn’t add up.

cuore profile image
cuore in reply toCDreamer

He was on Amiodarone post cardioversion, but was he on either a rate control drug or a rhythm control drug the 6 months in persistent pre -cardioversion? I ask because I was on Verapamil (rate control) when I went persistent. I saw a lousy cardiologist when I was 54 days persistent, but he did not change me to any rhythm control drug either pre or post -cardioversion.

My GP "acted" cardiologist for the one year before I got persistent full knowing that he could not prescribe a rhythm drug. Lousy medicine. This GP was trained by the lousy cardiologist so it was no wonder he bungled my treatment although he could have kept up to date by reading the literature. He even said because of my case, he had to read up on AF.

In terms of lasting results, I am now 15 months sinus. I do have two co-morbidities - high blood pressure and just reach the obesity threshold. I have had to have three ablations. At 74 years old, I had two ablations, and at 76 my third in 2019. So, I'm pushing your husband's age. All three ablations were in Bordeaux, France.

The Bordeaux team has built the LIRYC institute where under one roof different clinician specialist are gathered to try and solve this disease. Since it is so ephemeral, I do agree it is not one disease.

Steve101 profile image
Steve101 in reply tocuore

I think you make an important point of getting the right diagnosis and advice, GPS are GENERAL practitioners and cannot be expected to give best diagnosis and advice for conditions such as AF. I took the advice of people on this Form and arranged to see an EP privately, the best thing I have done, best £200 I have spent. I think your post really demonstrates how important it is to get a sound diagnosis with the right advice, would you agree?

Best wishes

Steve

CDreamer profile image
CDreamer in reply toSteve101

I agree, I was lucky as my GP who diagnosed my AF did have specialist experience and excellent training - actually he took on the local cardiologists on my behalf & advised me to go private & recommended I see someone from Barts. Cuore is in BC Canada - no private medicine available hence travelling to a France.

Now we have some excellent EPs available locally.

cuore profile image
cuore in reply toSteve101

Thank you for your reply because it affirms my conclusions, but more importantly, I hope it helps newly diagnosed AF patients the importance of early correct diagnosis and subsequently the correct treatment. Absolutely, I agree with you.

In my case, had I been sent to an EP upon diagnosis, placed on rhythm control drug awaiting an ablation, I strongly feel I would have had to have only one ablation and no drugs post ablation as opposed to three (with the third aided by Propafenone post ablation) to remain in sinus rhythm 15 months so far.

Because I live in Canada, I. did not have the option of a private consultation because our system, similar to yours, does not have that opportunity. Being kept persistent , plus facing a road to permanent AF, I packed it in and went to Bordeaux for my three ablations for which I paid myself -- the best 49,500 euros I have spent. Two of my friends are now in permanent AF.

One of the reasons I have remained on this forum is to caution affibers not to slide into persistent , if, at all possible, it can be avoided. I don't want what happened to me happen to them. It is entirely unnecessary, and beneficial to no one, not even the medical system.

baba profile image
baba

Apologies stoneyrosed, I didn’t mean to highjack your post.

stoneyrosed profile image
stoneyrosed in reply tobaba

I dont mind but i am probably more confused than ever now. 🤣

baba profile image
baba in reply tostoneyrosed

I think CDreamer gave a very good reply.

Everyone's experience is different.

I wish you well.

stoneyrosed profile image
stoneyrosed in reply tobaba

Yes, it is a complicated condition and Physalis was trying to help in his own way, i really appreciate everyones input to the posts and it doesnt matter to me if it develops into a debate, like i said it is complicated and not consistent. Thanks Baba 😊

Singwell profile image
Singwell in reply tostoneyrosed

Returning to the OP. It does sound like you might be moving more towards permanent AF though those lower readings look out of character. Keep a record and send the your GP and cardiologist. You can always have a phone appt these days. I can see where CDreamer is coming from re mindset as I've suffered from hypervigilance myself and had to find ways of tapping into my parasympathetic system - which is the body's system for resting. I'm Paroxysmal with my AF but my brother is permanent and like you gets 'possible AF' readings all the time. He's adjusted and says he doesn't notice his AF most of the time. Try to find things your u enjoy doing - sit out in the sunshine, take a slow walk, eat simply but food you enjoy.

cuore profile image
cuore

Sometimes on this blog, persistent AF and permanent AF are interchanged. Older medical literature even uses the word permanent.

Persistent refers to the period whereby the AF is continuous for a period beyond 7 days. When the AF is sustained continuously for one year and beyond, the terminology becomes long-standing AF. When the operator and the patient reach a conclusion that nothing more can be done, the terminology is permanent. You are far from permanent. Do monitor approaching persistent.

Great that you are on the list for ablation. The EASTAF NET 4 trial recommends rhythm control, so your being on Flecainide ( a rhythm control drug) complies.

Therefore, 4 readings in two days does not fit the persistent definition. If you do become persistent, let your cardio know because they may do a cardioversion to get you back to sinus. Also, do ring up and say that you are open for any cancellation. Good luck.

CDreamer profile image
CDreamer in reply tocuore

Paroxysmal = you have episodes where you self convert so AF comes and goes without intervention.

Persistent = you are in AF 100% of the time but can be cardioverted chemically or electrically.

Permanent = you are in AF 100% of the time and you and your doctors agreed not to try any other interventions. Some people find that they adjust well to permanent AF and are not symptomatic and may have heart rate control but find they live well in permanent.

It is possible to have a very slow heart rate and be in AF, especially if you take beta or calcium blockers. Often a pacemaker will be inserted to allow heart rate control without the HR dropping too low or pausing. This tends to be more common as we age.

Physalis profile image
Physalis in reply toCDreamer

That's helpful. I thought persistent and permanent were the same thing. I'm learning. So the member who is seeing his cardiologist today may have been in hospital and been cardioverted so that's why he's classed as persistent.

Yes I can imagine that a pacemaker keeping your hr above 60 combined with a heart rate drug to keep your AFib level down can be quite effective.

How low is very low?

If your heart rate is under 100 without drugs but your pulse is irregular should that be called AF? The heart is hardly fibrillating.

baba profile image
baba in reply toPhysalis

"If your heart rate is under 100 without drugs but your pulse is irregular should that be called AF? "

Not necessarily, if it is AF there will be no P wave on the ECG.

CDreamer profile image
CDreamer in reply toPhysalis

I need to correct several of your assumptions. My Pacemaker is ReSynchronisation therapy which does a lot more than keep my HR over 60. I since implantation - I have had only 2 very short episodes of AF since implantation in 2018.

I take NO drugs, other than anticoagulants. Heart rate drugs as they are incredibly dangerous for me so I have a RED ALERT on my file alerting doctors never to give me Adrenaline, any heart drugs and a lot of other drugs.

However, some people have different type of PM simply to keep their HR over 60 so that they CAN take rate control without their HR dipping too low - hence the HR is well controlled - but they may still be in AF.

Rhythm and rate are entirely different concepts.

As Baba has said - AF is categorised when there is an absence of a P wave on an ECG. The P wave is a small bump which you can see just before the large spike and it represents the polarisation and depolarisation of the atria. No P wave = AF.

Think of it as a wonky, misfiring starting motor on an engine.

Physalis profile image
Physalis in reply toCDreamer

That's interesting. I'll read this later

heartrhythmalliance.org/aa/...

Do many people have this? I thought pacemakers were generally used to keep the hr above 60. So are you saying that with a pacemaker the rate can be dropped so much that it is in the normal range?

But you are not on drugs and you are not really in AF much so it sounds like your pacemaker does a lot more than the usual one does. Maybe it is very expensive. Perhaps people have talked about CRT but I didn't know what it meant.

Yes, I know rhythm and rate are different concepts. I didn't know until yesterday that GPs couldn't prescribe antiarhythmic drugs. If my GP had prescribed flecanide then I might still be on it and I wouldn't have had my ablation - so not all bad!

CDreamer profile image
CDreamer in reply toPhysalis

No it is not commonly used and getting the authorisation for implantation wasn’t easy for a private procedure, interestingly - much easier through the NHS. Yes it is about x3 more expensive than a 2 lead pacemaker for purely regulating rate.

Flecainide actually caused me more damage and I was showing unusual ECG patterns.

The pacemaker doesn’t limit the HR rising, after the initial implantation when they do have a limit so you cannot overdo things but once released, the HR can still go high. I am unusual as I have several conditions to deal with AF probably being of the least concern and easiest to treat. The pacemaker was not expected to stop the AF as I had implantation so that I could have AV node ablation which would have left me entirely pacemaker dependant, however, after 6 weeks of no AF - I cancelled the second procedure and all has been well. I can occasionally feel a few odd palpitations but they never last more than a few seconds.

This type of PM is usually only used for those in Heart Failure, I wasn’t but because I wasn’t able to take drugs my excellent EP advocated for me to have this as my best option.

My tachycardia was usually triggered by very low BP, not only AF, so since the BP has been controlled with a Synthetic neurotransmitter my BP is now stable, PM keeps ventricle rhythm synchronised Voila! No more AF or long bouts of Tachycardia, AFlutter or Ectopics.

In my case it needed a very wholistic approach and thankfully I have a neurologist and an EP who talk to each other!

Treatment needs to suit individual needs. There really is no one fit for all as you need to know what triggers the arrythmias in the first place before you can really have a sensible treatment plan, everything else is sticking plasters. I was very lucky as I had doctors who were able to work it out and advocated for me.

baba profile image
baba in reply toCDreamer

"Flecainide actually caused me more damage and I was showing unusual ECG patterns."

I had a similar experience with Flecainide. I've been told never to have it again.

CDreamer profile image
CDreamer in reply tobaba

It’s a toxic substance & needs to be taken with care but not as toxic as Amiodarone but my husband is tolerating it well. It’s so hit and miss isn’t it? Helps some & damages others.

Physalis profile image
Physalis in reply toCDreamer

So what word can describe someone who has had episodes of persistent AF been converted and is now in sinus rhythm?

CDreamer profile image
CDreamer in reply toPhysalis

NSR - Normal Sinus Rhythm?

As baba described AF is characterized as having no P wave on an ECG & irregular pulse, assuming they still have a functioning AV node. People who have had Pace & Ablate procedure will have irregular atria but the pacemaker will compensate & pace the ventricles so pulse will be steady.

Physalis profile image
Physalis in reply toCDreamer

Look, I just can't understand this. Baba says she knows she has persistent AFib "from hospital ECG’s and Kardia recordings" but now has a heart rate of 60-80 and no symptoms.

Could it just be possible that she had a bout of persistent AFib and was hospitalised, cardioverted and is now in NSR?

baba profile image
baba in reply toPhysalis

"Could it just be possible that she had a bout of persistent AFib and was hospitalised, cardioverted and is now in NSR?"

No. I am in permanent AF.

CDreamer profile image
CDreamer in reply toPhysalis

I think she is the best person to ask and their reply is quite straightforward. I don’t understand what you are struggling to understand.

Being in persistent AF does not mean you have a fast heart rate - period.

Also see FancyPants reply below.

Physalis profile image
Physalis in reply toCDreamer

I thought that atrial fibrillation was the result of the normal heart beat being joined by a lot of extra signals so it would make the hr high. The concept of it still being AFib and a low hr is new to me.

CDreamer profile image
CDreamer in reply toPhysalis

AF means the only the atria is in Fibrillation and has lots of irregular signals, some of which get transmitted through to the ventricles - which pumps the blood to your body. As only some of the rogue signals get through in an irregular pattern this causes the irregular pulse, which is why AF is called an irregular, irregularity.

Many, many people are in AF and never know they are and therefore at high risk of stroke - without knowing it. Feeling the AF is a blessing because you know you have it and can do something about reducing your risks.

In Pace and Ablate the AV node ablation cuts the connection between the atria and the ventricles, hence the need for a PM implantation which then controls the ventricle meaning you still have AF - but you have a regular pulse.

AFlutter on the other hand causes all of the signals to be magnified and you tend to get much higher heart rate but at a regular rate. I have to say AFlutter made me feel much worse than AF ever did!

You can have either or both - and on occasions - at the same time!

Ducky2003 profile image
Ducky2003

I was put on Flec about 3.5 years ago but they had to take me off it after a couple of weeks as it actually made me worse so worth having a chat to your cardiologist.

wilsond profile image
wilsond

Check out my post the other day....saw Proff Osman my EP the other day. He looked at my Kardia history during our meeting ...many of the Possible AF were not in fact !

One lead ecgs are quite limited in scope he said.Could be brief whirls of AF but not full episode...

Take it only once a day or two days . Look at a normal reading and see the difference .

Also anxiety ..understandable,adds to it !

Best wishes

FancyPants54 profile image
FancyPants54

We are all different of course, but my life is so much better now I'm in persistent AF with a BB to help slow it down. Don't be so afraid of persistent. Stress won't help. But I never think about my AF now really. I've just changed BB so hoping for a medication issue to resolve, but the AF is so softly in the background that I can carry on as normal. I have unresponsive hypothyroidism so normal is pretty low-key, but I'm working on that.

momist profile image
momist

Hi there. I'm a fan of the old two lead Kardia, although I now use a different device. Just a few thoughts:

Have you figured out how to save the recordings without having to use the AliveCor expensive subscription offering? I save mine into a folder on my Dropbox, from where I can access them on any of my devices (laptop, tablet etc.) They take up very little space there.

The AliveCor website has an amazing description of how to interpret the Kardia recordings, and you can learn there all about the various parts of the ECG waveform. You don't need to know too much about this to easily recognise AF and other problems you might be having.

stoneyrosed profile image
stoneyrosed in reply tomomist

Hi, Not had a really good look at how i will send my recordings to the cardio yet i did not know it would cost, will check it out later but will certainly look at the way in which you did it thanks 😊

momist profile image
momist in reply tostoneyrosed

stoneyrosed I found the instructions slightly confusing,. If you choose the option from the App to 'email' the results, you can then tell it to save the file in the location of your choice. You get a trial period of using the Kardia storage, but then they charge a monthly fee after that time. If you choose instead a cloud storage service you already have, once the target is set up the system remembers where it last used and will always store the file there when you ask for the 'email' function. AFAIK, all cloud services will let you save files to them, I just happened to already have a free Dropbox account with space left..

Gilli54 profile image
Gilli54 in reply tostoneyrosed

You get it free to start with, but then you just save on your device as a pdf and email it to yourself and store on your PC or laptop or even a tablet. Dropbox is very useful if you don’t have a PC. You need to save them with a date you recognise, once you have run out of freebies.

baba profile image
baba in reply tomomist

The ECG's are now stored in the Kardia app (history) without paying a subscription.

From there you can convert them to PDF file and share.

The useful education part re different ECG samples seems to have gone. (It may still be available in KardiaCare which requires subscription).

momist profile image
momist in reply tobaba

Thanks. Seems I'm out of date on this. I must fire up my Kardia again after updating the app on my tablet, and see how this works.

baba profile image
baba in reply tomomist

Yes things change, not always for the better, with new updates. I've just noticed that "instant analysis evaluates the first 30 seconds of each recording." This is stated at the bottom of the PDF. I had assumed it evaluated the whole recording.

Physalis profile image
Physalis in reply tobaba

Me again! The Apple watch only records a 30 seconds ECG and I thought the Kardia was the same.

baba profile image
baba in reply toPhysalis

No it can record from 30 seconds, minimum required for instant analysis, up to 5 minutes.

Longer recordings often more useful to medics.

The newer 6 lead Kardia will give your doctor more information especially for other abnormal arrhythmia.

Kardia was specifically designed to detect AF.

Physalis profile image
Physalis in reply tobaba

I think that the Kardia and Apple watch both started in the same place with the Kardiaband connected to an Apple app. The watch is only set up to look for AFib, high heart rate, low heart rate but I expect a doctor could see PACs, PVCs and other things from it.

I bought mine for the fall detect feature. If you have a fall it asks you if you are alright and, if not, phones your contacts. It has just occurred to me that if my heart just stops it might be a good idea for it to phone my contacts!

momist profile image
momist in reply toPhysalis

Does it say what happens if you never respond?

Physalis profile image
Physalis in reply tomomist

Well, as it happens, I haven't had a fall. There was just one occasion when I knocked it on a door frame and it said something like "it seems like you've had a fall, are you ok?" I replied yes and that was that.

If I hadn't responded then it would have rung my three contacts in turn till it got a reply.

Buffafly profile image
Buffafly

Having read all the ramblings on this thread I’m coming back with advice which I hope will be helpful.

Take a Kardia recording three times a day regularly. If you have any very strong palpitations take an extra reading. Save all the readings. If the result is always ‘Possible AF’ that might show you are in persistent AF.

The record may help to show that you need an ablation urgently. I hope you manage to get it, I know how stressful it is knowing your procedure/operation may be cancelled.

Flecainide can cause other arrhythmias but as far as I know it doesn’t make AF worse.

Hope that helps, best wishes 💜

stoneyrosed profile image
stoneyrosed in reply toBuffafly

Yes i agree, i try to capture the recordings when i am in AF which is everyday at some point, even sometimes only lasting for a couple of minutes. I hope it will convince the cardios i need an ablation although to be fair i am on a waiting list and they said they would contact me if there is a cancellation. Thanks for your help 😊

Buffafly profile image
Buffafly in reply tostoneyrosed

Keep a bag packed, I had a cancellation at only a few days notice for Dec 15 and was told if I didn’t accept I would have to wait until Feb/March.

Gilli54 profile image
Gilli54

It took me quite a while to settle on flecainide. It worked then it didn’t and eventually it switched into working most of the time . But that was from May to October. I still get wobbles but it is complicated by getting my dose of Levothyroxine spot on as I have no thyroid. They may adjust the beta blocker slightly upward as the two drugs work together. I currently take 3.75mg but everybody is different. The amount that works best is very individual. The Kardia picks up when your heart is not in normal sinus rhythm but won’t identify why. It just says possible AF. Keep the readings and store them as a PDF and let your consultant see them. They are best Placed to interpret the reading. Your GP might be able to help too. Try and get a baseline before you get up in the morning. It’s all a learning curve, but don’t despair on the Flecainide working. Sometimes it just takes time. Hope you feel better soon. 😊

stoneyrosed profile image
stoneyrosed

Thanks, yes i am very disappointed regarding the flecanide not working for me yet, as i type this now i am getting small bouts of possible AF and i took a flec tonight. Interesting you say it worked for you eventually, do you think i should give it another month or two? I have so far been on it for 3-4 weeks. Spoke to the cardiologist and he told me to cut down the Bisoprolol from 2.5 to 1.75 as my bpm went down to 35, but he says continue with the flecanide at 100mg a day, i thought he was going to say stop the flecanide.

Buffafly profile image
Buffafly in reply tostoneyrosed

You are taking your Flecainide on an empty stomach aren’t you ☺️

Gilli54 profile image
Gilli54 in reply tostoneyrosed

Be confident in your cardiologist. It’s finding what works for you. And sometimes it takes time. As long as everything is good with your heart structure and health he might give it a little longer. But be guided by his experience. He’s adjusted the bisoprolol and that will have an effect. It’s a real exploration managing the balance of different meds. As somebody else has said we are all different and react differently. I do hope things improve. We are all on the same train, just in different seats!!

stoneyrosed profile image
stoneyrosed in reply toGilli54

Thanks i will keep all that on mind. 👍

stoneyrosed profile image
stoneyrosed

I am now yes 😁

tk5518 profile image
tk5518

Does anyone know if the Kadia 6L is better than the 1L which I have? I noticed that any kind of electro-static interference will cause it NOT to give you a reading. According to the Kardia 1L I am in and out of AFIB. I wish it would do a Blood Pressure reading as well?

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