Newly diagnosed

[vlc2]

Hi everyone

I've just been diagnosed with Afib following a 24 hour Holter monitor I had done in early December last year. The results only came back last week. Actually, the cardiologist's letter says the trace showed

1. Paroxysmal Afib

2. Atrial flutter

3. 4 short runs of VT which the cardiologist thinks are more likely to be supraventricular tachycardia with aberrant conduction.

My heart rate ranged from 66 to 160 and averaged 99 over the 24 hours.

I haven't yet even seen my GP or met the cardiologist (!) as all appointments have been remote, and the monitoring didn't involve meeting a cardiologist.

I've not had any medication prescribed.

The letter says the GP 'might' prescribe a cardioselective beta blocker 'if I am troubled with palpitations'. I don't seem to be a candidate for anti coagulation, apparently, so that isn't being offered. My GP did my chads score over the phone and discussed bleeding risk and I'm low risk. I did have a massive postpartum haemorrhage years ago but that isn't relevant, I don't think.

The Afib and tachycardia happens every day and has done for months now. It's mostly manageable background noise, although I do hate it. Once in a while I have a more severe episode which is very unpleasant and scary, but they pass within a few hours.

I'm 50

Healthy BMI

Non smoker

Don't drink much

I generally have low blood pressure.

I have hypothyroidism which is treated with NDT, asthma and am on HRT. To look at me you wouldn't think I had any health problems at all. I'm struggling a bit to wrap my head around the idea of having a diagnosed heart problem. It doesn't feel real.

I'm seeing my GP for the first time on Tuesday.

Is it normal to have daily Afib, flutter and tachycardia and to not take any medication for it? Reading Afib forums seems to suggest most people are having some sort of treatment, but if 'do nothing' is also a valid course of action please let me know.

I'm trying to gauge how much of a big deal it is to have this arrhythmia and tachycardia occurring daily, and how hard I should push to get treatment, or whether I can just do nothing until something changes. Should I be having more tests? If so, what?

Oh, and also, how reassuring it is that the cardiologist 'thinks' that the VT on my trace is probably SVT with aberrant conduction. I wish he had been a little more definitive on that point!

Thanks for reading this far.

[BobD Volunteer]

The important thing to understand (apart from AF won't kill you) is that any and all treatment is merely for quality of life. Once stroke risk has been assessed (CHADSVASC) and dealt with it really depends on how AF impinges on your life.

Many people are laid very low during events and can not function at all, even needing hospital attention whilst others may be blissfully ignorant that they even have AF until the stroke hits them. They are the real ticking time bombs.

Ventricular tachycardia can by problematic but supra ventricular (meaning the signals are coming from above the ventricle) is common and less so.

There are plenty of treatment options available for both AF , A Flutter and SVT so if you tre unhappy with the treatment you have received from your GP you should press to see an arrhythmia specialist such as an electrophysiologist to discuss your future options.

[BlueINR in reply to BobD]

While afib may not be a fatal arrythmia, it can turn into one. And a heartrate of 100+ is usually not good, unless that's your normal rate. I think these are more than "quality of life" issues. I find it impossible to do much of anything with a heartrate over 100, and it would seem that activity would increase it.

I've had afib with RVB quite a few times, and each time have been admitted to the hospital and treated to reverse it. From what I've been reading since I've been on this forum, it seems that in the UK docs are more casual about treating it than here in the US where it usually warrants an ER visit, a hospital admission and treatment.

vlc2, if your doc doesn't know what to make of your results, perhaps he can refer you to another doctor who can. I would find his response unacceptable.

[BobD Volunteer in reply to BlueINR]

And in UK our doctors are not paid on the number of admissions. They have a salary regardless. I have worked on committee with some of the leading EPs in Europe which is where I get my information. Granted rates over 140 are unpleasant (Normal is 60 to 100) but provided rate is well controlled AF is not a fatal condition unless you are stupid enough to try and run a marathon in AF. AF is never an accident nor emergency. It is a chronic condition and must be treated as such.

[CDreamer]

Hi and welcome - I think SO many people who are healthy, fit and active come to this forum struggling to ‘get their heads around’ arrythmias. Know that elite sports people and fighter pilots are high risk for AF so you are in good company! Your thyroid problems may be a factor so if thyroid is well controlled, sometime AF disappears. I don’t know enough about HRT but that may also be a factor. Everything is linked to everything else.

I would echo everything Bob said and with hindsight, putting myself in your shoes, providing my tests results were all good - I would avoid all treatments, especially drugs - unless I was struggling to live a normal life.

You may think you have a healthy lifestyle but what about sleep? Stress? Exercise? Breathing? Diet is only one factor.

It’s usual to be offered an echocardiogram or a scan to check the structure of the heart and providing that shows no unusual features and all your blood tests come back normal then I would stick at your stage. I would suggest that you look at and digest an excellent book called Cure AFib John Day - drjohnday.com/cure-afib/

if for nothing more than reading which tests you should ask for and monitor.

Ask if ablation is a possibility for you and when you should consider it and then read up as much as you can about it and both benefits and risks and consider whether or not that could be an option for you.

Knowledge is potential power so start by going to the AFA website and reading as much as possible and even enrol for the webinars? heartrhythmalliance.org/afa...

Good luck and don’t hesitate to ask questions - you will get a full gamut of answers and often much discussion as we all approach things very differently, I’m all for Lifestyle Medicine over Medical intervention, whenever possible but have done the drugs/ablation/pacemaker when AF stopped me living my life.

Discussion helps you to learn and form your own opinions and conclusions on what may work for you. Good luck.

[mav7 in reply to CDreamer]

Hi CD

Seems the OP should be on an anticoagulant, no ?

[CDreamer in reply to mav7]

It really depends upon their CHADS score - your GP should go through this with you - here is a link to the algorithm the doctors use chadsvasc.org

Different doctors and patients hold very different views but I consider my anticoagulant as my best protection to reduce my stroke risk but then I score 4. If you score 0 then there would be no imperative but some would feel reassured and there may be some who would say everyone should be anticoaguled. 1 would be your decision & 2 would be advised. 2+ strongly advised.

[mav7 in reply to CDreamer]

Great comments ! Thx !

[bassets]

Hi, vic2, welcome. No advice from me as you have already had the best now. But best wishes.

[Fullofheart]

Yes, not much more to add except I'm 46, otherwise fit and healthy and was diagnosed with AF in late 20s. In the interim I got on with life, enjoyed sports, travelling, social life etc. Currently under more intensive treatment as things have got quite a bit worse (also now menopausal and also developed underactive thyroid as result of meds) but I'm certainly planning on still being active...when I can.Seeing the right cardiologist worked for me. Wishing you all the best.

[momist]

Welcome to the club you didn't want to join. You've reached the right place! Listen to BobD and CDreamer, they are long standing stalwarts of this community. BUT, remember that very few on the forum are medically trained, and it's mainly acquired wisdom from others experience.

Yes, I suspect that 'do nothing' is a very good strategy in some cases, it all depends on your own experience and also on how you can cope with any symptoms. Your need for anticoagulation should be decided on statistical evidence, as that is all we have got. If you start worrying about that, some of the videos from Dr Sanjay Gupta of York Cardiology can explain it better than I can.

Any questions - come back here and ask. You will get help and support, not criticism. We were all new to this ourselves once.

[Ppiman]

Welcome! Just to add to what others have said, at some point, you might also have an echo-cardiogram and, perhaps, an MRI “stress” scan. These will give far more information to your cardiologist about what might be causing the various arrhythmias and whether the racing heart has weakened the heart muscle a little (mostly the left ventricle or valves). If so, this is most often temporary and reverts to normal when the tachycardia or arrhythmia is reversed (i.e. by drugs or ablation).

Tachycardia is said to be the aspect of AF and AFl that needs to be controlled, rather than the arrhythmia itself. That is usually achieved with a beta-blocker. That alone also sometimes stops the other arrhythmias.

In some people the AF or AFl itself causes too many symptoms; this is usually because the blood is no longer being efficiently pumped from the atria into the ventricles, which then have to rely on gravity and suction instead. In that case, you can feel a bit breathless and tired, as well, often, as deeply anxious even panicky. In that case, again measures are used to control that (drugs i.e. ablation).

When your Chads score changes, from age 60, I think, often, an anticoagulant is given.

Steve

[vlc2]

Thanks all for your detailed and helpful responses.

I'm seeing my GP for the first time in a couple of days, and I think I will be asking her to refer me to the electrophysiologists at Liverpool Heart and Chest Hospital.

As to how much it affects me, it's hard to put it into perspective. The big episodes are horrible, and frightening and uncomfortable. But they only happen every now and then.

I think I'm more concerned about the daily background symptoms, which are not so much physically debilitating, as they are worrying. Knowing it's happening daily makes me worry that this is not under control and may be more of a risk than I'm prepared to accept. I spoke to the cardiac nurse on the BHF helpline and she was concerned that a resting heart rate that goes to 140 or higher on a daily basis is a problem that needs to be addressed.

I'm fairly active, and I'm realising that whilst this isn't stopping me doing DIY, or singing in a choir, or even skiing, it is affecting my ability to do these things somewhat by causing me to feel breathless, being aware of my high HR, and having to wait for it to pass, or push through the discomfort.

What I have is paroxysmal. But it's also daily.

I need to understand better the risks associated with daily uncontrolled occurrences of Afib and flutter. I also need to understand the implications of this 'aberrant conduction'. And I want to understand if a surgical procedure is a viable first resort for me. Because my instinct is that if this is something that can be fixed with ablation rather than controlled with medication for 40 years, then that's what I would prefer.

Thank you again for all your insights.

[CDreamer in reply to vlc2]

You’ll do well with the Liverpool Heart & Chest as there are some excellent Electrophysiologists there. Ablation can be a first line treatment but often drugs are also given for a few months whilst you recover to give you the best chance of maintaining NSR.

I could cope with HR of 120-130 but as soon as it exceeded 140 I found life very uncomfortable.

Catheter Ablation is not considered a surgical procedure but can take a while to recover from.

Best wishes

[Magson in reply to vlc2]

You have been given some good advice. I would recommend logging your episodes, duration,dates and how you feel. I did it for over 2 years and it helped my case with my cardiologist and EP.

[JAXDC1]

Hey,

Sorry to reply late but just incase you haven’t heard much more regarding VT vs SVT.

I had a similar thing with my SVT where the ECG scans all appear as VT. The Aberrant Conduction as I understand it essentially means that the electrical signal of your heart beat is slow to conduct through your ventricles. This is what causes the arrhythmia, even if it is SVT, to appear almost identical to VT.

The only way they can prove one way or the other is usually with an EP study which is unsettling as you go into the operation not knowing what it is.

If you have any more questions regarding it then feel free to reach out!

Jack