Caroline

[Fudgelover]

I have had atrial fibrillation for 4 years. It has got progressively worse. Have been referred to have ablation. AF is getting worse and my HR is regularly above 100 BPM. Am on Fleconaide. 100mg bd. This was only increased in November 2024. Do other people have regular high HR? Can anyone advise?

[iansHealth1]

I had afib of 125/130 for four weeks before it went into arrhythmia with a top-out at 174 and I had to go to A&E and was in hospital for 7 days.

I eventually was cardiodiverted and that cured (so far, touch wood) the high HR.

What I learned afterwards was that with such a regular high HR but having a very low EF of 15/17% my heart was pumping very little on some beats.

So, I think - and there can be many variables in our own health issues - if your EF isn’t too bad, then the medics are happy to leave you be on afib.

[Fudgelover in reply to iansHealth1]

Hi

How did you feel in yourself? Have you had AFib for a long time? I was contemplating going private to get myself through the system quicker as I worry about all the possible issues it can cause. Sorry what is EF? I could not think what it could be. I do wonder if adjustment to Fleconaide or Bisoprolol could be an option. I have only had Fleconaide adjusted in August and then again in November this year. I feel it’s quite quick to have it changed again! It’s not always easy getting to see your cardiologist as you have to wait weeks. In that time you tend to stress over it and then that makes it worse. I don’t want to end up going in hospital but worry that could be the outcome. Is my AF getting worse too quickly? It’s seems to have got worse this last year. Sorry lots of questions but feel it helps to chat to someone else who has the same issue

[iansHealth1 in reply to Fudgelover]

Hi

NEVER worry about going to hospital. If you feel you’re unwell enough then go. Don’t do what I did and hope things would get better. They didn’t and I made myself worse.

As everyone says, we can’t give advice and I won’t, but I’ll certainly share my experience and it may coincide with - or not - your experience.

Sorry about the shorthand; EF is Ejection Fraction and that is the pumping force of the heart on the diastolic rhythm. (The bottom number on your BP machine).

The higher the number the of the EF the better, but the maximum is 75% not 100. I don’t know why.

I only started having afib in October this year due to an overactive thyroid. I had it constantly for four weeks.

That then led to an incident of arrhythmia where my pulse rate topped out at 174 and I was blue-lit to hospital where I stayed for 7 days.

I’m on a lot of drugs, bisop being one. I have been told that some drugs can take ages to start working and take an age to clear your system.

For instance, my hyperthyroidism is a side-effect of a drug called clopidigrel?? which I stopped taking a YEAR ago.

I’m in South London and I have dedicated Heart Failure Nurses who I see regularly and are on the end of the phone if I need them.

I see my cardiologist about every six months as long as there are no issues, but, especially recently, it can be every second day.

When he was on call and I was in hospital, he’d come and see me at odd hours of the day. Good guy.

I don’t know if AF gets better over time. I’ve looked at you tube and websites that say if you do this your AF will disappear.

Didn’t work for me.

My AF went straight to mid 120’s and stayed there, awake or sleeping, it made no difference and my cure was being cardioverted.

Hope this helps.

Ian

[Fudgelover in reply to iansHealth1]

Hi

Thank you. I did go to hospital a couple of years ago when my HR was up quite a bit 130-140. They gave me potassium which was not a nice experience but it did bring my HR down. My heart rate had not been that high apart from last week it did go up, but settled down to still near 100.

Thanks for letting me know what EF was. I have never heard of that.

I rang my consultant secretary Friday and chased up today and turns out he’s on AL until after Xmas on Monday. I asked her what she thinks I should do saying I know she’s not a HCP but she said she had no one else to ask and contact my GP. I have a call booked today so am waiting on that. Not sure what they will say or recommend. My heart does not feel like it’s racing though. I just know more because of my Apple Watch giving me HR results. Yesterday my HR was in the 60’s. It went back up in the night and had stayed level around 100-110. I have found recently when walking the dog when I come back up hill I feel more worn out.

I will see what the GP Recommends

My cardiologist will not see me now unless I need to be seen as I have been referred to St Thomas for ablation. Will let you know what GP says. I do not want to spend time in hospital over Xmas .

It’s good you got someone you can call to help. I think it would be easier I I did.

[iansHealth1 in reply to Fudgelover]

You can always call 111 or the BHF helpdesk, both of whom I’ve found helpful in the past, to talk over your anxieties.

A lot of what you’re going through is psychological. Understandable as you’ve nearly died, maybe on more than one occasion, and you’re feeling neglected by the NHS and those round you don’t really understand and asking you questions you couldn’t hope to answer in a month of Sundays.

You’re feeling every niggle and it’s all amplified because of your heart issues. A viscous circle.

Been there, done that, as have a lot of people on this thread.

I’d love to tell you it gets easier, it probably does…

For me, it just becomes tolerable. Barely.

You are not alone, just reach out.

[Friendliarthur in reply to iansHealth1]

Hi Ian

A normal functioning heart only pumps out about 75-80% of the contents of the LV.

Cheers

[iansHealth1 in reply to Friendliarthur]

Thank you for that, ‘twas a punt off the top of my head.🫤

[Choccie55]

I have SVT - supra ventricular tachycardia - and my episodes got more frequent with age which apparently is quite common. Could be the same for AFib. Definitely affected by menopause too. I would recommend trying an ablation. Mine was unsuccessful because an area was too near the AV node to ablate safely. I’m now on Flecainide in addition to Bisoprolol which is working well so far. I’m on the lowest dose so there’s room to increase if episodes increase again.

[Fudgelover in reply to Choccie55]

Hi. I do not always understand what all the different types of heart conditions are. I have heard of SVT. But do not understand what that is. My consultant originally said I had paroxysmal atrial flutter and then changed it to AF as my heart was racing more frequently. I did have a 72 hour monitor a few weeks ago, but typically had hardly any high AF or high HR’s. The week after my HR was having lots of AF. That is typical. I am waiting on an echocardiogram. Not had any appointment as yet. My referral to St Thomas has been sent but will have to wait and see how long that will be. Could be 9mths to a year. It does scare me as I worry about heart attacks or strokes. I am on blood thinners apixaban as I am also type 1 diabetic. Consultant recommended this as I am higher risk. Just feel getting old it not great. It one health issue after another. I am 57.

Would they not be able to do your ablation at all. I am hoping when I finally do get to have it. (Which absolutely petrifies me) that it will hopefully help a lot.

I have had these issues for 5 years but had only got worse in the last year

[Choccie55]

SVT is an arrhythmia similar to AFib. It’s a fast and regular tachycardia whereas AFib is irregular. I’ve had it 7 years and was referred back to cardiology last October because of an increase in episodes. I saw the consultant the following January and went on the ablation waiting list. I had it end of September at Hammersmith hospital. I’ve heard the waiting list is about 1 year for AFib. It’s good you are on blood thinners as this will protect against a stroke. I am 56. I’m sure symptoms have been made worse by menopause. Unfortunately I risked a permanent pacemaker if they continued my ablation so they stopped. I guess I was just unlucky. It’s natural to be worried about the procedure. It’s not the must comfortable but it’s bearable. I was awake for the whole 3.5 hours. But you might find with AFib you have a general anaesthetic. Check out the British Heart Foundation website for great information and videos about the procedure. Take care.

[Fudgelover in reply to Choccie55]

Hi

Thank you for the information. Glad to I have blood thinners but worry about bleeds if I knock myself. Honestly I worry about every little thing. Any little ache I think ooh what could that be. It’s genuine aches and throbbing but I think overthink things.

My GP rang me last night and had increased my Bisoprolol to 2.5mg. Now I got to keep an eye on my blood pressure. That’s another thing to worry about. Making sure it doesn’t drop too low. What am I like.

Are you on lots of meds.

Hope you have a lovely Christmas without too much stress