PAF how often is too often?

[tom0985]

I know everyone is very different but was wondering how much PAF is too much ie: needs a change in meds or soemthing else? To the day I am having AF turn up once a week for anything from 10 mins - 1hour30. Havjt had AF for long so it’s all new to me but I’m just wondering that is this acceptable amount for no intervention. I take 50mg flec twice a day and 1.25mg bisoprolol daily plus rovroxaban. Seeing cardiologist in June and just thinking whether he will be happy for me to carry on baring no other changes or whether he would suggest a change?

[rosyG]

A lot depends on how you are feeling. He/she will want to know how you are affected. I current medication stops you having bad symptoms that’s good. If not then change might be needed.

[tom0985 in reply to rosyG]

Thanks. Symptoms are noticeable, flip flopping in my heart which goes when in NSR. Generally nothing worse than that other than some anxiety and increased heart rate if I get worked up. I’m consicious people have said on here that AF drives more AF so should I not be trying to get to a point with medication or not that it comes along rarely if at all possible?

[rosyG in reply to tom0985]

it's difficult to advise as you say AF is quite new to you. When mine started 8 years ago I had episodes every two weeks for about 2 hour and a half I have vagal AF ( comes at night etc) and i noticed when it was bad enough to warrant A and E my potassium levels were a bit below normal I upped potassium in my food and a cardiologist who helped to start our support group in Epsom advised to have a magnesium supplement to match the increase in potassium (My GP prescribed) and I then had no more AF for 3 years, When my thyroid started playing up I had quite frequent episodes and now that has settled I have very few episodes. It's best to take all lifestyle changes you can- I stopped caffeine and alcohol and I eat very healthily= still could do to lose a stone in weight after lockdown I mention all my things so you can see it takes some time to work out what may underlie your AF which is really just a symptom of your heart being affected by other things- even just age and muscled deterioration . Don'r rush changes and be guided by how you feel Don't be anxious- easier said than done- but if you work out when you would seek help if the AF escalates (pulse rate etc) during an episode then you can just relax and sit it out It's fear of the unknown so have a plan@@

[tom0985]

Thanks RosyG appreciate the comments. Maybe I’ll do some trial and error with lifestyle

[mav7]

Hi Tom

What is your heart rate during the episodes ? Key in determining medication dosage.

And are the episodes after activity like being on your feet a long time, walking, etc ?

On a positive note, your episode times seem to be short compared to many.

[tom0985 in reply to mav7]

Hi Mav, my heart rate fluctuates from 1 min to the other during episodes. Can drop to 45-50 and can go up to 140-150. My resting heart rate is normally around 60

[mav7 in reply to tom0985]

Thanks for the reply !

Yes, the 140-150 needs to be addressed depending on how long it stays at that rate.

Patience is the key in this AF battle. Wish you the best.

[tom0985 in reply to mav7]

Generally last no longer than 30mins….?

[mav7 in reply to tom0985]

Need opinion of a medical professional, but my cardiologist told me a heart rate above 110 for over 10 minutes was a concern.

However, before I was completely diagnosed and prescribed medication I would have episodes once or twice a month with a HR about 120-130 for 24 hours. Had no side effects, really didn't feel that tired, just anxious/nervous.

Would be best if you can speak to your doctor or nurse before June to discuss a possible change in meds. Best to you.

[mav7 in reply to tom0985]

Forgot to add.

Ask to wear a heart rate monitor for an extended period (at least 1 week).

Tells the true story.

[Buffafly]

There are two schools of thought about this: the first is that if your AF is not affecting your life too much you should leave well alone, and the second is that you should have an ablation to prevent AF asap because it gets worse and harder to treat as time goes on. GPs and cardiologists often have the first view (tbh GPs often seem to think you should take the pills and get on with it whatever) and EPs tend to have the second.

Really it’s up to you to get as much info as you can and see which opinion you are most comfortable with because neither option is risk free - an ablation can go wrong and accepting the situation can lead to worse problems eventually.

Best wishes 💜

[tom0985 in reply to Buffafly]

Thanks - very good point. I appreciate I am probably on the lowest dosages of the medications so have some flexibility to increase although I’m aware that too much bisoprolol can make me feel not present at all. I may tweak slightly if the next episode comes on within the week as expected. I am not against having an ablation albeit a little worried of having a heart op despite reading the helpful guides people have sent in here. In an ideal world at least in the short term I would like to make lifestyle changes which gets rid of it for way way longer than a well but I have found it hard to pin down anything so far.

[secondtry]

I think the AF should be stopped completely asap and not wait until your June appointment. As the more the heart gets used to slipping out of gear the more it will; thats the consensus of opinion I believe. I started on Flecainide 50mgs x2 per day and still had 2 episodes a week so asked to go onto 100mgs x2 which stopped it. Suggest you contact your cardiologist now and if necessary his private clinic and pay for a telephone consult.

[tom0985 in reply to secondtry]

Thanks - when the AF occurs I take an extra 1.25 of bisoprolol which seems to do the trick. My thinking was to increase this dose as opposed to the flecanide

[Singwell in reply to tom0985]

The Bisoprolol is a rate controller (lowers the rate) whereas Flecainide is an anti arrhythmia. I'd guess the medical advice would be to increase the anti arrhythmic but obviously don't change the dosage unless on medical advice.

[secondtry in reply to tom0985]

If you are concerned about Flecainide it is a relatively old tried and tested medication. One study I believe highlighted dangers if you have other co-morbidities, your cardiologist/EP can no doubt fill you in on that one.

[Singwell]

How high are your rates and how much does it interfere with your life? 50mg X 2cis the lowest dose of Flecainide so its possible an increase might help but bear in mind it's a hefty drug.

[tom0985 in reply to Singwell]

140-150Max lasting no longer than 30mins so far. Was thinking increasing bisoprolol dose before flecanide personally but don’t know what’s best

[Snowgirl65]

My doctor told me a-fib intervention is judged by the sufferer, i.e. how much they feel they're willing to take. Some people don't mind weekly episodes of a half-hour each; others want it eradicated as much as possible. My episodes were lasting a day-and-a-half (very symptomatic) a few times a week before I decided on my second ablation.

[tom0985 in reply to Snowgirl65]

I would like it eradicated as much as possible within minimal medication….greedy I know!

[Snowgirl65 in reply to tom0985]

Agreed!!!

[Bennera513]

In the beginning (3 years ago) I experienced Afib once a year. Then once every three months, then each month then weekly and with a few back to back days thrown in. It seems the turn towards more frequent episodes happened over night. I had been on medication (Pill in Pocket) since the beginning, but I knew it was time for intervention (ablation) when I couldn't cut the grass without afib, or I couldn't mountain bike with my Son and his friends without afib while high up in the woods, etc. It was very obvious and there was no question, the frequency and severity and impact to other parts of my life, made it clear it was time. When you know you know.....A big component was reaching a point where I began trusting my EP implicitly. No feedback from the forums was going to replace his personalized view of my status and prognosis. Best of luck!

[tom0985 in reply to Bennera513]

Thanks Bennera, appreciate it. Did the ablation work well for you?

[Bennera513 in reply to tom0985]

It's funny, I hesitate to say glowing success as the memory of the constant chaos in my heart is still fresh on my mind (literally, I mean there was some mental nastiness to deal with) and I suppose I'm a bit superstitious. Honestly, it was a challenging recovery, but overall it's been nothing but improvement since the procedure. I had one episode of afib at day 5 (longest one I'd had to that point, 6hrs). I had weeks of ectopic (PAC) storms with thousands in a day. My heart rate is much higher than before. Initially in the 90s morning to 80s afternoon to 70s evening. At 4 months now, the PAC's have all but ceased, there has been no more afib and the heart rate is down 10 bpm on those numbers above. I'm deconditioned and out of shape currently but finally able to approach exercise with a bit more intensity, though again heart rates are quite a bit higher for same exertion as what I'm used to. And that's it, despite the 'scary' rhythm stuff that settles after a couple months, it's been a challenge to get used to the way things 'feel'. It's like getting a new body and learning how it's going to respond. things were a bit wonky for a bit there. I wore all my gear (Kardia, iWatch, Polar strap) every time I went for a walk, etc. But now, I prefer to not even think about it. I'm normalizing. Despite the challenges I wouldn't hesitate to do it again if needed. I could not have asked for a better outcome to be truthful.

[Cookie24]

My experience is similar to Bennera513. At first episodes were every three months. The episode became more frequent and lasted longer. I felt awful in afib. At 16 months I had an ablation after much research and on the advice of my EP.

[tom0985 in reply to Cookie24]

Thanks cookie, appreicate it. And the ablation has done the trick for you?

[Cookie24 in reply to tom0985]

I had a radiofrequency for atypical aflutter a year and a half after the cryoablation. In the past two years, I have had two episodes. Each was linked to stress and dehydration. Still, way better now than pre-ablations.