New Afib diagnosis: After both my... - British Heart Fou...

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New Afib diagnosis

Agrianes profile image
21 Replies

After both my Fitbit and the Fibricheck app (given me by my doctor) identified Afib, my GP gave me the all clear and said nowt to worry about.

A couple of months later and a visit to A&E got me a holter belt, which the GP seemed reluctant to give as he felt it was all stress/anxiety (and to be fair there was plenty of both by this point). I got it, though, and it confirmed Afib.

I've been put on bisprolol, referred for an echocardiogram (a week Saturday) and now - 6 weeks following diagnosis - I continue to have PACs regularly and what I believe are Afib episodes on average 50% of the days.

Episodes last 1-2 hours if they come on during sleep, or longer if they come on during waking hours.

My question at this point is what further care should I expect/anticipate at this point? I have the echo scheduled, but no further check ins with the GP. Should I be going back given the frequency of episodes, or is this what life is now? I'm just totally without guidance, really.

BHF have given me great advice on emergency care, but this day to day stuff is very disconcerting. As a 46 y.o. male I'd love to get a grip of this as there's plenty of life to be enjoyed yet!

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Agrianes profile image
Agrianes
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21 Replies
SaxmanAD profile image
SaxmanAD

Hi bud, hope your ok. Yes Afib is a pain.The echo should give a comprehensive reading & then you will hopefully get a plan in place ref medication, treatment ect. It's hard not to get stressed & tired also because if you think about it all of your organs are working above their pace to keep up with your heart when it's in afib. As hard as it seems I would say take a rest when you need to and also during my periods of afib I used to do some very slow breathing exercises taken from yoga. I found controlling my breathing was reassuring and also good for me mentally. Hopefully you get some solutions soon bro. 🙏

Morges profile image
Morges

Hi. I am surprised you have not been prescribed an anti coagulant? I am new to Afib but my GP insisted on an anti coagulant.

Agrianes profile image
Agrianes in reply toMorges

I scored 0 on the CHA2DS2-VASc thing, so that was the end of that part of the discussion.

paintbook profile image
paintbook

If you have paroxysmal A fib then I would suggest buying a Kardia mobile, so when you have an episode you can record it to show to the doctors etc. It is a very useful device.

Agrianes profile image
Agrianes in reply topaintbook

That's a good shout. I had been looking at an Apple Watch, but they're ludicrously expensive. The Kardia 6L is on offer at the moment so I may grab that.

KeepingHealthy profile image
KeepingHealthy in reply toAgrianes

My Cardiologist recommended the Kardia Mobile to me in July last year, I bought the 6L and it has been worth every penny. It was this that detected Tachycardia and I have been able to show the reports to my Cardiologist.

CaboSteve profile image
CaboSteve

Hi Agrianes,

You dont say if you are symptomatic during your Afib episodes? If you are asymptomatic, your GP is probably right to just put you on a low dose beta blocker to control the rate at time of Afib episode (recommended rate before rhythm) . I would suggest a couple of blood tests for Thyroid TSH and NT-pro-BNP for chf. I also assume if you have hypertension, that it is controlled. I am very surprised that GP did not recommend DOAC blood thinner if your episodes are truly Afib or Aflutter, despite the Chads score. However, these are usually first prescribed by cardiology rather than GP so I would check with them.

Depending on what is found with echo and ECG as well as blood tests, the decision may be to leave you be if you are asymptomatic. However, the alternative would be an ablation which is minimal invasive and about 60% curative on first application. 70-80% on second if required. I would be talking to a cardiologist or electrophysiologist at this stage and get a determination especially on the blood thinner.

I have been living with asymptomatic peroxisomal Afib (and occasional Aflutter) initially brought on by Graves disease for a couple of years now and on blood thinners and bisoprolol for rate control. I have not gone down the ablation route yet. I have a Single Lead ECG (similar to Kardia Mobile as suggested in here) which simply helps to confirm that my heart rate is within acceptable limits when I get an episode but is not particularly useful otherwise as it really cant differentiate between Afib and Aflutter.

Good luck and stay positive. Afib is not usually a life threatening condition except for the risk of stroke. Yes it can be annoying but if it is asymptomatic you can learn to live with it for now. Important thing is to make sure the rate is controlled during episodes.

Agrianes profile image
Agrianes in reply toCaboSteve

Hey, thanks for the insight.

I'm symptomatic; breathlessness, thumping/random heart, fatigue, a sense of 'fullness' or pressure in my chest all present during an episode. They're normally preceded by PACs with a good dose of dizziness to boot. 6 months into the journey and the anxiety/low mood is very present.

The bisoprolol (5mg) is seeming to control the rate. I had an episode last night, 5pm until after I went to bed, which didn't go over the mid-nineties while it was having its fun.

No hypertension here - BP was fine before this kicked off last November and had stayed towards the high end of normal until I started the beta blockers. It's bang on now.

I did get some bloods done when I presented to A&E at the start of February with chest pains. I'll dig out the notes and see what that was for.

The point about speaking to cardiologists/EPs and ablations is a good one; I don't know how to get to that point. I'm hoping the GP is waiting for the echo results for a better conversation than the 5 minute telephone chat we had regarding the diagnosis.

Breesha profile image
Breesha

I was diagnosed with AF 60 yrs ago, I only started medication when I was 55 yr , I am now over 80 , I have worked full time til, 70, and now work almost as hard, we have travelled the world during this time …..so my advice ..try and ignore and do not panic.

Agrianes profile image
Agrianes in reply toBreesha

Thankyou Breesha, notes like this are wonderfully reassuring when I'm worrying about what the future may hold.

Mavros12 profile image
Mavros12 in reply toBreesha

I have just been diagnosed with AF and am 55 yrs old. Your post is really really reassuring and encouraging, thank you. As I have been left floored by AF and left worrying and wondering if I had to curtail my active life of skiing, sailing, paddle boarding and cycling and what the future held for me.

Dondito profile image
Dondito in reply toMavros12

I had afib on and off and was prescribed flecanide pill in the pocket to take whenever I had episodes whilst I waited for a catheter ablation operation for 18 months . Glad to say had op in jan 2023 and have had no further afib episodes and have resumed to full gym work, running and sports. I’m 64 this year and feel I have my life back

Mavros12 profile image
Mavros12 in reply toDondito

Hi, thank you that’s really encouraging. I usually go to the gym 5 days a week but since I have had AFib I have been too anxious to go to the gym in case I have an episode there. I really can’t wait to be able to feel I can get my life back. I have even become anxious about driving anywhere in case I get an AFib attack.

That’s great you have got your life back again, happy gym time! 😊

Dondito profile image
Dondito in reply toMavros12

I was apprehensive about going to gym but kept my Apple Watch with me to monitor my heart . Had a couple of episodes whilst in gym but took flecanide and just slowed down my exercises and didn’t do the ones that accelerated my heartbeat so changed to walking and elliptical cross training machine whilst waiting for flecanide to take affect . Never worried about driving so I hope you can get over your anxiety and see if you are able to get a catheter ablation operation

Mavros12 profile image
Mavros12 in reply toDondito

Thank you, I have an Apple Watch, so will work up the courage to head back to the gym and keep an eye on my heart rate via my Apple Watch whilst exercising. I am still driving but find I get so anxious before I drive anywhere ( which doesn’t help ) so am working on becoming less anxious.

Dondito profile image
Dondito in reply toMavros12

The hardest thing I found was the months after my 3and a half hour heart ablation operation. Was very anxious about exercising wondering whether Afib would return but each week I gradually increased the intensity until the fear had gone. My cardiologist at Epsom was brilliant as when I got diagnosed with afib and asked if I could continue going gym and running he said absolutely. Exercise was good and if I wasn’t in afib to continue as normal and when I had an episode to take my pill in the pocket until my heart returned back to normal beat which was generally anything between 2 to 4 hours of taking flecanide pill

Dondito profile image
Dondito in reply toDondito

are you a candidate for ablation

Mavros12 profile image
Mavros12 in reply toDondito

Hello,

Gosh I can understand why you would you would be anxious going back to exercise after ablation but that’s great you worked through it.

My dr also said to carry on as normal with the gym and skiing but I have been too anxious. Yesterday your messages really helped me and encouraged me so thank you, do I have decided to go back to the gym but do a class so it’s more a gentle return to build my confidence up.

I don’t have a pill to take when an episode happens the cardiologist put me on 2.5mg of Bisoprolol which can make me feel dizzy sometimes.

I am due to see the cardiologist in a months time for a follow up so will ask him then if I am a candidate for an ablation.

CaboSteve profile image
CaboSteve

Yes it can be difficult with GPs these days but I would insist on a cardiologist consultation. Even if it is just for him/her to read your ECG and take a look at your echo. You might be a candidate for Pill-in-the-Pocket Flecanide therapy which again can be prescribed by a cardiologist. You can read about it on line. It is a NICE authorized therapy but it cannot be used if your episodes are A-Flutter unless you are on beta blocker which you are. Unfortunately cardiology referrals under the NHS take forever ☹️ Your episodes are short lived at the moment and now is the time to consider alternative treatments such as ablation before they become more permanent. Mine typically last a week to 10 days but again are self terminating.

Try and see if there is a trigger which sets them off - you may be able to identify certain exercises or even foods which sets the episode off. You dont say if you have diabetes? which can also be a trigger. COVID episode can also be a trigger so if you have had an infection recently that can sometimes cause an arrythmia. See if there is a particular time of day. Keep a diary of start and end times and average/peak pulse rates. That is where a Kardio Mobile comes in. If you want something for continuous monitoring as well as an ECG the Galaxy watch 5 or 6 is good and they are readily available second hand for around 150 quid. I have a 6/40mm and it alerts me if the rhythm is off - possible Afib as well as giving me a good ECG to document the average and peak pulse rates.

I am only saying all of this because you are symptomatic. I was at first too - dreadful dizziness, fatigue and breathlessness but now frankly, after a year I dont even notice it except that my watch alarms and tells me my rhythm is off.

Agrianes profile image
Agrianes in reply toCaboSteve

Thank you Steve

When I see my GP about the echo I'll give the cardiologist angle a hard push and hopefully he refers.

I've got 2 months of data now (though not peaks, good shout) and having read the NICE guidelines I definitely fit the bill for consideration for onward treatment.

No diabetes here. I am overweight (and working on it, 20lbs down so far), have cut alcohol and caffeine. My initial palpitations are often triggered by anxiety/stress, so am working on that actively. Figured out in the past couple of weeks that chocolate is a definite trigger too, so that's been cut also.

Had Covid Easter last year, so while I can squint and perhaps point at long Covid as an overall cause, it's far more likely to have been chronic stress, prolonged and high (for me) alcohol intake, rampant insomnia and weight gain.

Agrianes profile image
Agrianes

So, I guess as an update because someone else may read this, I've had my echocardiogram done and got the results back.

Good news is that everything is a-ok, an absolutely normal reading across the board. My heart is structurally sound, it's just the electrics that are misfiring.

Basically, I've got a Peugeot for a heart.

Spoke to the doc yesterday about the treatment plan and he explained I am on a rate control strategy and that it's appropriate given the echo results. Just a continuation of the bisoprolol. for me.

Fortunately, both the PACs and the afib episodes are reducing in frequency and intensity as well. I suspect some of this is psychosomatic, and my anxiety/stress causes them to occur more often, which increases the anxiety etc etc.

The past couple of weeks have been better in that regard also. I'm hopeful I can get a handle on this and adjust to the new normal, for the first time in months. I'm also hopeful the new normal is a far less drastic change than I anticipated.

My plan now is to have the long summer break I have booked in from mid-July and then to take stock in the latter part of the year, pushing for alternative approaches based on the situation then.

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