Consultant visit has left me muddled.

[mommabearuk]

Today was my second visit to at Heart Rhythm Clinic. Since the last visit in November, I have had Echo and worn the Zio for two weeks and he told me then that if all showed ok when I saw him next time ( today) he would be planning for me to have a pacemaker fitted as, as well as AFib I have Bracycardia.

Today just after I arrived at the clinic started feeling so tired, my heart going mad, usual Afib symptoms so popped to the toilet and used my Kardiomonitor to check and yet AFib with a heart rate 140. I then was called for an ECG then waited to be seen. As past few months when had AFib I started to feel so tired, real battle to keep my eyes open, kept having to go to the toilet and splash water on my face plus the usual pain in my shoulder and feeling as if heavy weight on chest.

When I was called in doctor said you are in AFib as it is showing on ECG and asked how I was feeling. He then said forget about pacemaker just now and other things previously discussed as he can tell my quaility of life is poor - very true I spend now most of time in bed as so fatigued, been getting worse for years ( only Dx'd AFib last May as previously when asked doctor about racing heart etc told just panic attacks - exercise and meditate, that went on for 3 years till a GP actually decided to do halter for 24hrs and in AFib 22hrs that day).

So he said he was sending me for an MRI of my heart to check, aggg cannot remember as was feeling so bad, but he said if it showed the part was ok I was to take Flecainide, so he was giving me the tablets to take home and as soon as he has results of scan if all ok he would contact me to start them rather than wait until my appointment in clinic.

No with feeling so urg I did not ask why the change in plan or anything else, to me, it felt like something had shown up in the ECG that changed everything but daft me did not ask.

I know no one here is medically qualified to help but just now so worried about what is going on, feel as if he thinks something urgent that needs sorting and so that is more important than the pacemaker and my bradycardia.

Has anyone else had this happen - still in AFib, been 12hrs but usually my attacks last at least 16hrs so hopefully should ease soon.

Oh yes, he told me to take as many of my pill in my pocket as needed - I take Bisoprolol 1.25 ( was on higher at first but so dizzy) and in Nov told me to take an extra one if HR went over 70 but now he has given me 2.5mg and as said to take as needed. If take HR comes down but then goes up over 70 after a few hrs to take another and another till it stays down. My normal resting HR is 45-55 ( Bradycardia as definitely not fit).

I guess not used to a doctor suddenly saying my quality of life is so poor it must be addressed .

Reading up on Flecainide it is quite a scary med but if it works should certainly help but am scared as I tend not to react well to a lot of meds.

Sorry for rambling on just feeling rather scared I admit, I know am making a mountain out of a molehill

[Thomas45]

I took the maximum dose (300mg a day) of Flecainide for 10 years with no side effects. It prevented episodes of AF.

[JOY2THEWORLD49]

Hi

So what was the verdict? From the Arrhymic Specialist?

Take Flec.. or not.

You confuse the reader.

Usually the h/specialist will medicate for rhythm or for Rapid Heart Rate.

To follow guidelines he/she can't give any medication if your heart structurally is abnormal. Then meds only no cardioversion or ablation as wel as above.

The latter was me. I went through 2 Beta Blockers which could not control my Rapid H/Rate.

At 2 years 3 months I got to see a well respected Heart Specialist.

He introduced CCB Diltiazem 180mg. H/R decreased from 156 to 51 in 2 hours. Changed dose to 120 CD mg AM. Great.

Still keeping 2.5mg Bisoprolol PM H/R 60s rising in afternoon.

Now dropped Bisoprolol as low BP so H/R popped up to 80s.

Cheri JOY. 76. (NZ)

[mommabearuk in reply to JOY2THEWORLD49]

I have to wait to have results of heart scan ( not sure when that will be) then will be told if I can take it or not.

[Buffafly]

No molehill, I can understand why you feel anxious, but so refreshing to hear of a cardiologist understanding your poor QOL and taking urgent action to help. You can’t take Flecainide if your heart isn’t structurally sound hence the MRI, sounds as if it’s going to be done soon. It looks as though the doctor is trying to prevent damage to your heart as well as relieve your symptoms which show your heart is overworking. If you can’t have the Flecainide or the side effects from bisoprolol are too bad there are other options. Hope that helps, best wishes ❤️‍🩹

[Tapanac]

Not a mountain out of a molehill naturally you are worried and scared as we all have been so understand.

First reading about flecainide on Google is a bit harsh. Yes it is a toxic drug but as my doctor says all heart drugs are toxic. However I was on flecainide for 8 years and I personally found it a miracle pill. It stopped my tachycardia and although still had flutter despite an ablation, my quality of life improved.

Last year I kept fainting because heart rate went below 30 so had a pacemaker. No more fainting. So with the bisoprolol flecainide and pacemaker all good

Having Covid twice and the last two vaccinations it has messed things up snd I’m now in permanent afib and tachycardia and heart failure. I think without the pacemaker flecainide bisoprolol I’m not sure what might have happened

Anyway after all that please don’t worry about flecainide. It’s good.

[ruskin10]

Don't read too much on Google re meds. I take Flecainide as pip and it certainly shortens my episodes. If you can phone EPs secretary and say you're a bit muddled can she find out do you take Flec or not. She will. I've found secretatrys very helpful over many years. Best wishes

[mommabearuk]

Thanks everyone. I know I cannot take Flecainide until after heart scan - I remember he did says must ensure all ok, Echo did show some slight enlargement of LA but overall appears ok - this is something I had planned to discuss with him as only seen the report sent to me and yesterday was first time seen specialist since both Echo and Zio.

At moment I take Bisoprolol 1.25 every night and took one as pill in pocket but he has now given me 2.5mg for this. I take dapagliflozin as well as other meds for my diabetes and when I saw him in November he told me he was pleased as he now gives this to his patients when suitable as it has show to help heart. Not on any other meds or treatment for heart as then he just said if Bradycardia showed up in Zio monitoring then a pacemaker would be next step.

It is reassuring about the Flecainide. With being so tired all the time - both mental and physical, it has been hard to really research all this properly as even though I did suspect heart problems for years as knew I was not having panic attacks I just accepted my GPs advice on the whole, even though I did bring it up whenever I saw a doctor at my surgery but that was not often.

I think what really through me was a doctor actually putting my quality of life first, never, ever had that as even when had bit side effects to meds in past they always say take them no matter what - put me in hospital a few times and then get told was stupid to continue to take them and GP acts shocked I was so bad, even though fully informed as have a few other conditions that are not heart related. Just not used to being taken seriously about how I feel I guess and it really has thrown me.

Thanks x

[JaneFinn in reply to mommabearuk]

It sounds to me like over the years you’ve had a lot of the kind of fobbing off from medics that so many of us have had, and you went ages without your arrhythmia being believed or identified. So it’s no wonder you’re surprised when one of them bothers about your quality of life!

And even when they can see the ECG readings, or test results etc, I think many many medics don’t recognise how something affects their patients until they literally see it before their own two eyes. In your last appointment with your cardiologist, I imagine that actually seeing the impact of an AF event on you, (with rapid ventricular response, ie beating so fast) will have just set him down a new course of action. He’s seen the effect, so he’s trying to make the symptoms better for you. So I wouldn’t worry that he’s changed his mind about treatment - it’s not a sign that something is more wrong, it’s just that he’s seen the reality for you, and is acting on it. That’s my take on it, anyhow

It’s so great you’ll have a cardiac MRI, as that will answer a lot of questions and hopefully give you good peace of mind and enable helpful treatment to give you better quality of life. Do let us know how you get on, won’t you? X

[Snowgirl65]

You're not making a mountain out of a molehill. Hopefully you'll find some relief soon. In the meantime, Flecainide worked for me for many years. It's certainly worth a try in the meantime for you.

[JOY2THEWORLD49 in reply to Snowgirl65]

Hi

NO snowgirl . NOT everyone can take Flecainide!

It is a dangerous med and risky. It can make your beat worse.

And I can't take it like others because of a structually damaged heart. Nor cardioversion or ablation so do not tell everyone they CAN take flecainide, please.

Also if one is in persistent AF it is not worth trying to change the arrhymic status but work on reducing the arrhymic beat.

CCB Diltiazem safe anti-arrhymic med but folks cant take it if they haveproblem in the ventricles or very leaky valves. But there are other ones.

Let this be a learning guidance to you and others who do not know. She is waiting for her results and should do for reasons given above.

Cheri JOY. 76 (NZ)

[Golfer60UK]

Hello, My advice is to go past your doctor and ask for an appointment with a Cardiologist, one who deals with the electrical input to your heart.

Doctors, bless them, are very general and sometimes you need specialist care

Best of luck

Dave J

[mommabearuk in reply to Golfer60UK]

Hi, sorry didn't make it clear this was a cardiologist I saw on Tuesday, second time I have seen him. The plan after first meeting was to see him this time and he would pass me to on the clinic that deals with the electrical activity in heart for fitting of a pacemaker but that is all on, at least pause now until heart scan after he saw the way I was when in AFib. So will await the scan, no idea how long waiting list is, , am in UK. I am attending the LHCH

[Golfer60UK in reply to mommabearuk]

Best of luck, but you are in the right area.

I live near to Weston Super Mare and am under a brilliant Cardiologist in Bristol.

Also am 79 close to 80 😗😗

Dave J

[mommabearuk in reply to Golfer60UK]

Yes from what I have read hear the LHCH seems to be up them among the best in UK so am lucky it is in my local area and actually not far from where I live, so no long travel unlike for my bleeding belly button, hospital sent to for that is far away and have the journey back there this week ( they forgot me and so its over a year since went when should have been 6 months\0, they said they want to remove belly button but I think as its only tiny bits of blood and pain has subsided just uncomfortable I ask to have surgery put off until my heart problems are if not sorted at least stable as had the belly button problem 3 years now and was in a lot of pain but not seen as urgent so took a year just to be seen by specialist - my GP said as I was not losing weight it could not be anything serious even if painful and I could cope with the pain being a woman, I had babies naturally so a bit of tummy pain should not bother me.

[mommabearuk]

Thanks all. Have my appointments for scan but got it wrong its CT scans not MRIs - he didn't state it just said scan in the big machine that sound like a washing machine so I presumed MRI. Have had both MRI ( head every 10 years or so for suspected MS) and CT for bleeding tummy button, Diverticulitis diagnosed then and more recently a head scan when I somehow managed to fall upstairs and fly across landing and crash through a bedroom door hitting my head on a chest of drawers and being on the blood thinners was advised I must have a CT scan to ensure no bleeding, there wasn't thankfully. Had not had a bad fall in years but minute on blood thinners ( well month on them) I have one, typical.

My appointment is for 11th March, which I would guess for UK is fast.

I am to have a CT Cardio Angiogram Coronary first then 30 mins later a

CT Cardiac Cor Artery Calcium Scoring.

So now it is just a matter of waiting until I have them and see what results are.

Really grateful to you all x