Still only 1 and 1 only AFIB reading ... - Atrial Fibrillati...

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Still only 1 and 1 only AFIB reading since Oct, 2020

MrGC314 profile image
45 Replies

Only one finding of afib since October 2020. I bought a Kardia immediately after and check myself about 25 times a week. 73 years old and all is good. Moving forward to November of 2022, my cardio doc believes I should still take the miserable Eliquis twice daily. Eliquis pretty much makes my life a nightmare and I cannot tolerate a statin. My cholesterol is 136 and my calcium score was 377. My blood pressure generally runs 119/68 but I do experience elevated blood pressure when visiting the white coats.

Any recommendations or thoughts on how I had one reading during a routine cardio check-up and one only? My point is, I want to get off the Eliquis and any blood thinners. I'm inclined to take myself off. I was also thinking of a 30-day monitor.

I'm interested to hear any opinions. Thank you in advance.

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MrGC314
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BobD profile image
BobDVolunteer

You can always stop anticoagulants but you can never undo a stroke.

MrGC314 profile image
MrGC314 in reply toBobD

Thanks for the helpful reminder, Bob - 😱

I am 70, with AF every night, but on no medicationat all. What's the difference!? Where have been anticoags and all the other medication only 50 years ago!? Why would you take it?! Because someone has written that it is dangerous to be without it?! Not buying it!!!

MrGC314 profile image
MrGC314 in reply to

Thanks, Nesko!

saulger profile image
saulger in reply to

"A total of 276 373 cardiovascular deaths related to AF were identified in the United States between 2011 and 2018 in decedents aged 35 to 84 years. Age‐adjusted mortality rate increased from 18.0 (95% CI, 17.8–18.2) to 22.3 (95% CI, 22.0–22.4) per 100 000 population between 2011 and 2018.

The increase in age‐adjusted mortality rate (average annual percentage change) between 2011 and 2018 was greater among younger decedents (7.4% per year [95% CI, 6.8%–8.0%]) compared with older decedents (3.0% per year [95% CI, 2.6%–3.4%])."

Conclusions: Cardiovascular deaths related to AF are increasing, especially among younger adults, and warrant greater attention to prevention earlier in the life course."

ahajournals.org/doi/full/10...

in reply tosaulger

The fact is, that human species is changing, and maybe quicker than it was to expect. In my country, we had, in 1980, 1 authistic child in 1.000 children. Nowadays, we have 1 such child in 57 children. The increase is not several percent, it is almost 20 times in 40 years. Sadly, I have seen here, in the forum, that almost everyone of you, elderly, have at least one authistic grandchild.

Further, we have 400.000 young couples (in the population of 7 million) without children (willing to have children, but sterile).

As for the children, I have noticed that in the past 40 years, the percentage of extremely fat children has increased sharply. We hardly had 1-2% of such children before, but now the percentage is about 40% (official data).

Having in mind that children are the future of this planet, we do not have very bright future... I do not dare to mention here, why it might be happening...

saulger profile image
saulger in reply to

Hi Nesko. Please do mention why the dim future, as I have no idea what you mean?

Changes in lifestyle and technology resulted in obesity and less than nutritional diet, plus lack of physical activity, etc. What you did not mention is that medical science has moved forward and now diagnoses more issues than previously, which account for some of the increase.

I am with one leg in your camp. I am low CHAD2VASC score with lone AFib and no co-morbidities and due to my age (76 next week), it is recommended that I take an AC, which I resisted until two months ago.

You say that you are not on any medications with AFib for the past 15 years, which leads me to ask: how frequent are your episodes, what heart rate, how long do they last? Are you not bothered by the symptoms and do they not limit your physical activity?

in reply tosaulger

Hello, neighbor (I am 700 km to the North)!

Look at "Guidestones", in Georgia, USA. The first point, of 10, is:

"Maintain humanity under 500,000,000 in perpetual balance with nature". As Charles Bronson said in one of his movies: "There are 7 billion of us too many, lol!"

I have bouts of AF literally every night, for longer or shorter period of time. Almost no symptoms, apart of numb extremities here and there, shivering in the chest, very mild, and erratic pulse (at the level of 80-90). My heart is slow running, usually 48 to 52 bpm, so 80 is "very fast". Strangely, no bouts during the day! Hate nights, lol!

Us, the people, have started believing that for every and each health problem, there is a "magic powder" or "macig pill", but it is not so. If the problem is of electro-mechanical nature, as arrhythmias are, than the pills are of little help. I know well, that some people are very satisfied with the effects of the pills (especially bisoproplol, lol), but in many cases it may be just coincidence (AF would not come anyways - all of us know that it is quite unpredictable).

saulger profile image
saulger in reply to

Hi Nesko, 7 million and 700 Kms north - Bulgaria. Добър ден!

Yes, we are too many. When I was at high school we were 3 billion. Charles Bronson died in 2003 when there were "just" 6.3 billion people (he was a futurist).

In 30-50 years we will be 15 billion. We are already seeing the scrambling for resources and influence, but I shall not be there to see it.

I take a less fatalistic approach to AFib. Unchecked AFib weakens the atria because of the atria fibrillating at 300-500 bpm, and if your ventricles are also beating at 120-130 for 12 hours or even permanently, it will lead to heart failure. You and I are already experiencing SA block causing bradycardia. And I will wager that your QRS complex on an ECG may be outside the normal range?

As you say, the problem is EM (cardiac cells calcifying and thus conducting a current outside the normal pathways). Channel blockers ae designed to stop the errant signals. The pills definitely work for many, not for all and not permanently.

Bisoprolol definitely reduces my AFib rate, Flecainide taken at the right dose at the right time of day, also checks many episodes. Other people do better on calcium channel blockers than sodium CB.

I must rush off because I leave in exactly 8 days for Tokyo to have a mini-maze procedure with Dr Ohtsuka at the NewHeart Watanabe Hospital. I hope to be permanently in NSR and will not be taking any meds for AFib and no AC thereafter. Can it get any better?

Cheers, Nesko. Take care.

in reply tosaulger

so you managed to get one, hope all goes well Saul, good luck…….

saulger profile image
saulger in reply to

Many thanks. Appreciated !

DawnTX profile image
DawnTX in reply to

I take it because I don’t really care for the game of Russian roulette as far as a stroke. Many people on here have dealt with the stroke part of a fib. You are your own person you do what you want but as Bob mentioned there’s nothing to undo a stroke

SeanJax profile image
SeanJax

why you don’t get a second opinion? Ep insists on Eliquis because of legal lawsuits too in the States. A second opinion would say the same. So at the end it is up to you since it is your body your choices. Alternate route is to propose to them to monitor yourself your heart rate regularly day and night and if you got Afib episodes and you will resume eliquis. The tricky part of it is Afib episode can happen while sleeping and it would not wake you up. Some does not feel Afib at all even while awake. How do you monitor your heart rate during the night? There is special monitoring devices used by sleep apnea patients to monitor their spO2 and hear rate during the night. You can try that.

Another research shows stroke can happen without Afib because of the atrium got fibrosis and it is prone to clots even without Afib episodes. At the end it is up to you. As I said always your body your choices.

And even Eliquis does not protect you 100 % from strokes.

I took care of my dad because of stroke due to Afib for nine years even he took religiously his Coumadin. We don’t pass away right away after a stroke. Stay in the bed for 9 years with diapers and depending on your family for everything. It is not fun. Every four hours changing positions to avoid bed sores. The whole nine yards for stroke patients

MrGC314 profile image
MrGC314 in reply toSeanJax

Thank you for your response. My apple watch signals me of any night time issues. Not that an apple watch in the exclusive detector device but honestly, with eliquis, I really have no life. Ice cold legs, tired all the time, zero libido and not the same person. Like you said, basically it's a roll of the dice. I just find it difficult to find that one episode as the marker of a lifetime on miserable blood thinners. On the flip side, nobody wants to be a burden on others because they refused to take a pill that made them miserable in life. Again, thank you.

in reply toMrGC314

Considering how many people take Eliquis (Apixaban) the forum doesn’t tend to get many negative comments and after taking it for several years, I don’t recognise any of the side effects you mention. I see from your profile there is a reference to Lymphoedema which I understand can cause cold legs. I’m a bit older than you, but I believe prostate issues can cause some of the issues you mention. It may be worth checking to see if it could be something else that’s causing the symptoms you describe…….

MrGC314 profile image
MrGC314 in reply to

thanks again...the old prostate is doing ok... good PSA numbers and great flow. Currently take alprazolam for anxiety which could be part of the equation

pusillanimous profile image
pusillanimous in reply toMrGC314

I have been taking alprazolam for panic attacks and anxiety for 15 years, but it has never caused any of the problems, save occasional tiredness - but it is a sedative so that is to be expected. My doctor is not concerned about addiction problems with me, I'm 79, my prescribed dosage has never changed and sometimes I do not take the full dose. I have never had a problem with them and my other medication for AF - I was on Alzam before AF !

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toSeanJax

Hi

Sorry that your family had to experience hi stroke.

Mine in Sep 2019 woke me up at 2am ewith a very sore head. After trodding to loo I went back to sleep but awaking at 5.30am made me look in the mirror.

Mine was mind. But it was undiagnosed AF which caused it. H/R always a low 47 average at night. Cold shoulders.

Carotid arteries clear but a shadow on Thyroid.

So AF caused by undiagnosed thyroid cancer in my case.

So stroke can be worse ever or mild. Now 3 years down track fingers on right are still resolving. Fingers swelled immediately, speech a little affected by tongue and swallowing difficulty.

Otherwise speech came back and I sung in our Christmas Choir in December 3 mths later.

cheri JOY 73

Hylda2 profile image
Hylda2

try a different noac

MrGC314 profile image
MrGC314 in reply toHylda2

thanks, Hylda! Eliquis is so damn expensive.. The pharmaceutical companies are making a killing in profits. Without insurance, I don't know how people can do it with meds.

Hylda2 profile image
Hylda2 in reply toMrGC314

I take Dabigatran and have no problems

MrGC314 profile image
MrGC314 in reply toHylda2

thanks!

Just a couple of thoughts. My cholesterol is not bad at 3.7 but I guess it’s measured differently in the States. Here in the UK, the general thinking is that once AF has been diagnosed, depending on an individual’s CHADs score, AF patients are at an increased risk of stroke, regardless of the frequency of episodes. The thing that occurs to me is that if you need to check with your Kardia 25 times a week to establish whether or not you are in AF, the chances are you are asymptomatic because most of us don’t need a Kardia to tell them, they just know! If the Kardia only reads for 30 second per reading, then you only KNOW you are not in AF for 12.5 minutes per week. So it’s possible (but admittedly highly unlikely), that you wouldn’t know whether or not you are in AF for the remaining 10,067.5 minutes of the week. Bearing in mind you might be asleep for 3,360 minutes a week (if you’re lucky), you could be taking one hell of a risk if you stopped taking your anticoagulant!

I think you should also be wary of any non medically trained member offering direct advice regarding prescribed medication which is one of the reasons why it’s discouraged but of course, everyone is entitled to express their view. I changed from Warfarin to Apixaban (Eliquis) back in 2018 and I have been (to the best of my knowledge) been AF free for almost 3 years. Having worked with stroke victims, nothing would discourage me from continuing with my prescribed medication…….

MrGC314 profile image
MrGC314 in reply to

Thank you, Flapjack! Well received!

MrGC314 profile image
MrGC314 in reply to

great article, Flapjack - aafp.org/pubs/afp/issues/20...

saulger profile image
saulger in reply toMrGC314

Extrapolating from John Mandrola's article:

" If we assume a screened population of 10 million watch owners, a 90% specificity for the recording, and a generous estimate of AF prevalence of 2%, 200,000 people will have AF and 9,800,000 will not."

My previous post cited the percentage of AF related deaths to be 22.3 people per 100,000 = 44.6 deaths, when diagnosed and I assume treated. I wonder how many AF related deaths due to AF not being diagnosed and untreated?

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to

hi Flapjack

You mean no one could discourage you from stopping your E........cheri jOY

in reply toJOY2THEWORLD49

yep, Apixaban is my best friend!

Gumbie_Cat profile image
Gumbie_Cat in reply to

Two sisters one with a mild stroke at 65, the other with a bigger one - but caught early with clot busting drugs - at 64. I already had a retinal vein occlusion in 2019, but nothing showed on tests.

So, when diagnosed with A Fib this year, at 67, I almost grabbed the Apixaban from their hands!

(Just wish I could get the other drugs sorted - getting a cryoablation next month. Quite scared!

bassets profile image
bassets in reply toGumbie_Cat

I think you will probably be fine. I had a cryo ablation a year and a quarter ago and although I seem to need the same amount of meds, I am pretty well af free at present. Good luck and get lots of rest afterwards X

Gumbie_Cat profile image
Gumbie_Cat in reply tobassets

it’s always good to hear a positive message! There is a video on the AF association page, which says that even if the AF is not completely gone, the medications often work better, I’m feeling very low with it all at the moment - so far dronedarone and Flecainide have not kept me out of it. On low dose Bisoprolol - and can’t take too much more as my heart rate can run low too.

bassets profile image
bassets in reply toGumbie_Cat

Try to stay positive. I was a real mess for about 18 months before I was able to stop myself worrying. This really didn't help my af. can you possibly try mindfulness or something to lift your spirits? Take care and do something you love. Best wishes .

Gumbie_Cat profile image
Gumbie_Cat in reply tobassets

I need to get my knitting out and chill!

DawnTX profile image
DawnTX in reply toGumbie_Cat

I let my Cardiologist know I do not want to give up my Xarelto it does not bother me and perhaps it is my security blanket but I feel safer taking it

Gumbie_Cat profile image
Gumbie_Cat in reply toDawnTX

Same here, the apixaban doesn’t bother me. (Though it’s free here, and that helps!) Sometimes when the antiarrhythmic drugs have failed, I do worry in case the anticoagulant isn’t working either!

Ppiman profile image
Ppiman

No one here can gainsay a professional and experienced doctor on something as dangerous to life as a stroke, nor would they try. But I can well imagine how you feel and I wish I hadn't had to take mine. I have had very little AF since my ablation for flutter in 2019, and none since June. Sadly, the cause of AF isn't often known, and it could be caused by other reasons that are themselves known to be linked to thrombi formation (i.e. the thrombosis risk might be independent of the fibrillation). The size and shape of the atrial appendage, for example, has been shown to be important.

Regarding statins, trials have conclusively shown that genuine intolerance is unusual to say the least. The only way to be sure is for someone else to start you off and not to tell you that you're actually being given sugar pills, rather than active drug, then see what the effects of these are. Of course, yours might be a genuine metabolic issue and if so, there are other alternatives if your cholesterol is high enough to warrant being reduced (itself an imprecise science).

It's a dilemma, and the lack of understanding, along with the fear of stroke, is driving the prescribing of anticoagulants Ike never before. Having spent years in the pharmaceutical industry, it worries me how fads and marketing pressure operate on medical opinion, too.

Steve

DawnTX profile image
DawnTX in reply toPpiman

I have been on a Staten for years and I asked my doctor my newest one about it if there’s any improvement on them. It seems that what I am taking meets his approval what I would like is for someone to come up with one that helps us with joint and body pain. I know I am not the only person that gets it from this medication. I am sure this is the one causing it because I had to stop it for a few weeks and felt so much better. My former primary said he would love to be able to take me off it but my cardiologist would kill him lol once again it seems we have a necessary evil to keep ticking.

Ppiman profile image
Ppiman in reply toDawnTX

It's hard to know with these things as the conditions they help are such long term things. From all the evidence I have seen, statins are worth taking, but if they cause you side effects, I think I would go down the diet and exercise route, which seems to have a very similar effect. A friend of mine, now quite elderly, got his cholesterol down that way as he was determined not to take statins.

Steve

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

You get AF every night.

I had a stroke embolic at 2am. My H/R is slow at night. Avge 47.

My experience was stroke with AF and undiagnosed AF and thyroid cancer.

The cancer was discovered in a carotid arteries scan which was clear.

I was prescribed PRADAXA 110mg x twice.

Papillary cancer removed in time with full removal thyroidectomy and 12 lymph nodes on right. 2 were infected.

The best step is to control the H/R and ease the rythmn.

Diltiazem 120mg regulates my day avge high H/R and helps rythmn.

Bisoprolol 1.25mg (just been reduced from 2.5) taken at night. It does not affect my 47 avge H/R at night.

Anti-co.agulants are in inself an added risk. PRADAXA has a 33% risk of heart attack which they are trying to defend.

Its a personal decision.

I ask you to investigate Google by asking questions.

The last research I did was that A.....x dan one is better but unfortunately NOT funded by our Pharmac in New Zealand.

cheri JOY. 73 (NZ)

ozziebob profile image
ozziebob

I hope you saw my recent Post about the possibility of reducing anticoagulation ... healthunlocked.com/afassoci...

One of the contributors to that Post mentioned that his Cardiologist believed it took several days for a clot to form after AF starts, giving plenty of time to restart anticoagulation, but I'm aware others on the Forum insist otherwise.

But this matter definitely needs more research, and I'm sure that the new research mentioned in the Post above (React-AF) will give more information about how quickly clots form, amongst other important information about anticoagulation and bleed and stroke risks.

While results are not immanent, there is hope.

Gtish profile image
Gtish

Took my last Eliquis tablet last night. Been on them 22 months. Hated the prospects of dying from a brain bleed like my father when he had a small fall. I’m having the Watchman placed in my left atrial appendage on Wednesday. It blocks clots from escaping the area of your heart where 90% are formed. No more blood thinners for me!

MrGC314 profile image
MrGC314 in reply toGtish

Wishing you the very best! Let us know how the watchman procedure goes.

Dadtoalad23 profile image
Dadtoalad23

I hate being on Eliquis/Apixiban. When I saw EP Dr Ullah at the spire the other day he said at my age 46 and with a CHADvasc score of 0 my risk of major bleeds is higher than my stroke risks and he advised to stop the anticoagulant until a month before a cardioversion, a cardioversion that from being on this forum I know is unlikely to work for persistent AF.

Now if I hadn’t been someone who’s obsessed with gathering information and reading research papers and being on this forum I’d of probably thought great and stopped. Now I feel like I’m in a catch 22 based on information I’m reading in forums !

I’m terrified I’m going to have stroke. Essentially I’m also still waiting on echo results which is also terrifying. I’m also persistent AF albeit within normal HR range. I have to say this last month has been the worst of my whole life. It’s depressing. I’m 46 ! I’m fit and healthy albeit with a family history of heart issues. I switch form depression and anxiety to being angry. Sorry I’m moaning. I think at 70 + it’s hard one to decided maybe I’d think sod it I’ve had good life if the treatments making you feel awful then maybe don’t take it.

Then again we all love life regardless of age. I have a ten year old son and busy business and somehow have to get through till he’s old enough. And man if I had the money to get a watchmen privately I’d be making the call now ! In fact I hope that because of my age I can somehow get on a NHS list or a trial.

DawnTX profile image
DawnTX in reply toDadtoalad23

I cannot answer about everything but yes I am terrified of a stroke so I will gladly take my Xarelto. It seems to have some control over you bleeding. I have taken several bad falls and one in particular stands out in my mind as far as not bleeding out. My initial injury was right around my shin that turned black and blue quickly. It was not until the next day that I had spiderwebs up the front of my leg from the initial injury. That to me made me feel that Xarelto does not allow you to freely bleed. Other than the ugliness of the bruising I had no bad effects.

do not give up on cardioversion. I had a bit of an attitude why bother because of what I have been reading here. I finally had one almost 3 weeks ago and I went from a 158 heart raid that had continued for five months to waking with 82 and as my cousin said to me, I looked alive again. Evidently I had not been looking all that great. My heart rate was 82 when I woke up today it’s 76. I am grateful even for these three weeks because of the difference that I feel. I was hesitant and afraid of the cardioversion now I would be at the door if they called me to come. We are all different once again. Our a fib is different we have palpitations we have permanent we have all kinds of other issues so we cannot go by what someone else says. If you felt as bad as I have felt the last five months you will gladly try a cardioversion. I am well aware I may need another or some thing else but the other choice is to just continue feeling awful. My doctor himself will tell you some last 20 years others he has had a patient back in the office the next day. They are trying to give us quality of life I suggest you find out for yourself how your body handles a cardioversion. I was comfortable from the time my two nurses came out to escort me in when they introduced themselves. I had an entire area to myself and as different staff members came in they also introduced themselves My cardioversion was the internal the last thing I remember was spraying my throat twice and waking up with a smile on my face whether it was from the drugs or circulation to my brain finally all I will tell you is it was a beautiful day and continues right now. I am grateful for every day I can feel this good

Bloodredroses profile image
Bloodredroses

don’t be over anxious. Ksrdia can make one overly anxious. Do as G P or Catdio suggests.

Do not stop blood thinners without medical supervision, can induce a clot . I have been on Rivaroxaban 20 mg 5 years , now APS in negative , now reduced to 10 mg . I prefer that than none as had an unprovoked blood clot in lung . ( no fees on other than APS.) means can happen again . I feel better on a low dose Rivaroxaban , sticky blood platelet s - APS. So I feel more awake as more oxygen to brain. Better circulation. . Don’t just stop meds without supervision if Clots stroke history .

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