Feeling overwhelmed by chronic paroxysmal AF

[Kinfusion]

My husband had a MINOCA in April ‘22 (only diagnosed after MRI in December and had been thought to be myocarditis). Since May ‘22 he’s suffered dreadfully from AF - episodes last typically 2-3 days and are triggered by just about anything other than sitting in a stimulus free environment! He feels breathless, weak and has mild chest pain. On good days he’s able to walk slowly on the flat - before last April we were cycling 15-20 miles. On AF days he is puggled and does very little. Despite a couple of admissions to hospital for AF episodes A&E the cardiologist just keeps saying he expects it to settle down. He has only had one telephone consultation since April. The 7 day monitor he had in October only showed AF for 6% of the time, but the Kardia is showing much more than that, and worse since having Covid in December. Medications are Losartan, Edoxaban and Atorvastatin - he couldn’t tolerate Bisopralol because of asthma. We don’t feel there’s anywhere to go because the cardiologist says ‘you are exercising quite well so don’t need cardiac rehab’. My energetic, healthy and active husband has become an invalid and is being very stoic but it’s getting us both down now. Some words of encouragement would be really appreciated.

[CDreamer]

Hi and welcome, I’m sorry that you and your husband are suffering, unfortunately AF is often a long journey and in these times, not given the priority so often goes untreated for too long.

COVID most certainly seems to exacerbate AF episodes in many people - I know I had COVID in Oct 2021 and I would say it took at least 12 weeks for my AF episodes to settle again - up to COVID my AF burden was about 1%. COVID has long term, disabling affects for many people so it may be really hard to distinguish what is causing which symptoms and people are taking months to recover from COVID so think months rather than weeks.

Having said that, COVID aside, has your consultant talked you through treatment options? Was the cardiologist you spoke to an arrythmia specialist? Could the medication be exacerbating symptoms?

May I suggest that you visit the AFA website to research possible treatment options and then go talk to your GP about a referral. Sometimes you do need to be quite proactive, difficult I know in these times.

It took me something like 6 years to make progress because I wasn’t referred to a specialist - when I eventually sought a private consultation things started to change.

Another 8 years on AF doesn’t bother me that much at all but I will never be able to get back to the very active life style I used to have because exercise is unfortunately a common trigger for AF for some people and certainly is for me so my exercise is now very gentle and meditative.

Best wishes

[Kinfusion in reply to CDreamer]

I can’t tell you how much your supportive advice has helped. My husband started to improve a few weeks after Covid which had really knocked him. He’s had a good response from a letter he sent to his cardiologist and is going to have some further tests. But the good news is that by following what he calls a ‘slipping clutch’ approach, (start any activity very slowly and never push really hard), and avoiding some triggers as well as learning to accept the situation, he’s had two weeks AF free. Hope it will continue but we’ve both accepted that if it doesn’t it’s not the end of the world. Thank you.

[CDreamer in reply to Kinfusion]

That sounds like an excellent approach, we adjust and adapt. Very best wishes and thank you for kind words.

[mjames1]

Run, don't walk to another doctor. If you can afford, go private. You want to see an electrophysiologist (ep). Absolutely no reason your doctor should accept your husband's symptoms without more aggressive treatment. Depending on his medical condition, he might be offered anti-arrhythmics like Flecainide, or an ablation.

Jim

[Hidden]

Quote: "Isn't it funny, how many of us here are cyclists...?"

Sooner or later, people here will have to accept that physical activity is cumulatively contributing to getting cardiac arrhythmia. If nothing else, suggest to your younger ones to be very careful with the exercise.

[pusillanimous in reply to Hidden]

I have never been a sporty cyclist, but have always used a bicycle to cycle to work and school and for pedalling over the countryside. (when I was a youngster in the UK). Now I have an exercise bike, and as I have symptomless PAF coupled with CO D, too much walking makes me out of breath - but I can sit on my exercise bike, pedal at a slow rate, sing to myself (I pedal to music) and never ever feel breathless. I have it on my frameless glass enclosed verandah, so I look out onto my little garden and watch the birds as I pedal away, and I find it so relaxing !

[secondtry]

It does usually get better, sometimes much better with pills or an ablation.

2014: Newly diagnosed, hi anxiety/borderline depression, could only walk very short distances not uphill, confused as ignorant of the condition & all the potential solutions.

2023: On Flecainide (200mgs) & after a multitude of lifestyle changes I am into my 5th year of returned energy & exercise abilities, all done at a moderate level; a changed life but no less enjoyable.

Make sure you use AF as a driver to improve your lifestyle and hopefully avoid future chronic conditions. I certainly have a lot to be thankful for because of AF.

[Kinfusion in reply to secondtry]

Thank you. Your positivity has meant a lot and has helped us both adjust to the situation and make improvements.

[Lizty]

That was my life before my ablation. Not a cyclist, but a bit of a workaholic. You need a referral to an EP. Take a print out of the ecgs from the Kardia across a couple of weeks to show him or her what is happening. By the time I had my ablation the breathlessness was stopping me having conversations for any more than 15 minutes... very frustrating for a chatterbox like me! Some of us with paroxysmal Af do have a tendency to push ourselves beyond normal limits. I think that is something we may have in common.

[Kinfusion in reply to Lizty]

Thanks Lizty. We might need to investigate that but for the moment things have settled down.

[Desanthony]

Ask for a referral to an elecrophysiologist (EP) If you can afford to see one privately in the first instance then do so they may well then agree to put you on their NHS list after that consultation. An initial private consultation can cost anything from £150 to £350 so check when you make the appointment - remember they will likely want to do tests and these can be expensive so although it's easy to say yes to these when they say they can do them straight away check how much they are going to charge and then ask to go onto their NHS list if you can't manage them.

All the best.

[Healthy64]

Hi I get your situation my medics have been in denial since 2012'and refused to use kardia prints until one cardio doc looked a bit closer I gave her a kardia trace along with the kardis technician report cost approx £10.00 it was a profound narrow complex tachycardia . She then checked in hospital monitor and their EGGs and despite having an implanted loop monitor she concluded that The implant monitor was good standard but not working right programming or other fault the kardia device was not only accurate but able to catch things where ever they happened . However one cardiologist actually was discharging me from hospital after Ed episode treated in resus then majors then told go home no issues here

His medical consultant colleagues pointed to high rising levels of troponins suggestive of non stemi mi

They arranged 3 rd test held me for that and then transferred me to another hospital where a left posterior fascilua block and lbbb was seen on ecgs I was commenced on new drug regime to suppress the high tachycardia I go to 228 - 250 - 270 bpm on occasions with v high bp to accompany that 280 / 145 and higher

The indifferent cardiologist said if it's not on a hospital monitor or 12 lead then it doesn't matter as I can't treat unproven symptoms that beats all I think

Anyways recent ED attendances now 50 plus attendances with multiple runs of atrial flutter and a fib I also know heart remodelling effect so a SAM now showing on echocardiogram

Treatment change was to use Sotalol along with Lercandipine 20 mg , perindopril 8mg pm and dozasosin 4mg xl slow release mid day with apixaban 5 mg for stroke protection ive but interactive thyroid so levothyroxine 100 mg for that and Asthma drugs pulmicort and sabatmol when needed

Now the Sotalol is a newer drug used to treat A fib it's supposed to calm the heart improve conductivity and lower blood pressure

It does show great improvement in blood pressure coming near normal within days

Problem with this drug is it's a class 3 anti-arrithymic so need to be very careful with asthma and bradycardia effect . I can't take prescribed dose for that reason I use 80 mg am and 40 mg at night to avoid extreme bradycardia effect cardiac and bp collapse my GP advised on risks of sudden death with this drug on higher dose but that's probably specific to managing my co morbidity

You might explore the range of drugs available with cardiologist or arrhythmia specialist EP investigation

I do hope you find my take both interesting and also suggestive of being aware of your need to understand and have explanation of your conditions to get the pathway to the best treatment for you

If in doubt don't accept the I'm telling you statement seek verification and second opinion after all its your body and your health .This forum is so good at enlighting people through real experiences and quality of feedback to inform and enable considered health decisions

All the best on your journey may you get to bring the best you can be and unfazed by all I'm a survivor ! So are you

Regards healthy guy now 65

[CDreamer in reply to Healthy64]

Just like to say that my doctors recognised Kardia since 2013, both GP and EP and I was able to email my ECG traces to them so they could advise. Maybe I was just lucky but never had a problem with doctors accepting Kardia as it is a device accredited by both in Europe and US and NICE approved.

[Healthy64 in reply to CDreamer]

Thanks for that I'm replying a bit later as had another episode fast onset in local supermarket and ambulance paramedics insisted I go to ED again Anyways home again and consultant being updated by ED consultant with findings. So hopefully moving on ED consultant thought kardia a versatile tool.and whilst not a 12 lead and with limitations nonetheless a very useful capture of an episode and useful in guiding investigations .

No doubt correct finding on kardia analysis . I'm a bit happier now if only because I met enlightened doc with a progressive outlook

Thanks CDreamer as you're right Karda isn't just widely approved cardiologist like one I had recommended it did to its versatility

Onwards and upwards then

[Kinfusion in reply to Healthy64]

Thanks for your support and good luck. My husband has had a good couple of weeks after taking a ‘go gently and accept’ approach to his condition. There was a big anxiety factor for him I think.

[Kinfusion]

Thank you to everyone who has replied. There is such a lot of kindness and support on this forum that it is really uplifting and helpful. Lots of ideas for us to digest and learn from.