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How frequent is your paroxysmal AF & do you take a PIP

Pigleywigley profile image
47 Replies

Morning AFibbers. Was wondering what those with PAF frequency is? Mines every 2-3 weeks & I take 300 mg flecanide. It works but I feel dreadful after (like now from last night 🥺). Cardio is recommending Dronderadone. I suspect frequent episodes prob need a better solution than PIP. I started with a lot of ectopic beats after my 2nd covid jab on thurs & things didn’t settle down until AF last night 😤

Thank goodness I have a review booked with Dr Gupta 👏👏👏

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Pigleywigley profile image
Pigleywigley
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47 Replies
BobD profile image
BobDVolunteer

You are really lucky that your AF burden is so low to be frank. A lot of people would swap with you any day. For many, even taking drugs every day does not control their AF one iota. Just be aware that AF begets AF and for most people their events become more frequent and do need either ablation or full time drugs. Always best to take action before that happens.

Pigleywigley profile image
Pigleywigley in reply to BobD

Yes Bob appreciate that but it’s progresses from3 months to 3 weeks in 6 months so I can see what’s coming. My question was mainly about whether to continue with PIP or prevention.

secondtry profile image
secondtry in reply to Pigleywigley

I would go on 200mgs Flecainide daily asap.

Pigleywigley profile image
Pigleywigley in reply to secondtry

Thanks secondtry going to see what Dr Gupta suggests in May 🙏

Cookie24 profile image
Cookie24 in reply to Pigleywigley

I had paf beginning with 3 month intervals and by the end of that first year the episodes were coming every other week and then persistent. I tried pip with no luck and went to daily with no luck. I had an ablation 14 months later.

waveylines profile image
waveylines in reply to BobD

Oh Bob that sounds depressing especially as the EP told me am not suitable for intervention so drugs seems to be my only option. I went gluten free three months ago and the unexpected benifit has been a lower heart rate....much to my suprise. Now am working on lowering my weight as Im two stone over.......all will help but I dont want it to get worse!!

Pigleywigley profile image
Pigleywigley in reply to waveylines

Same waveylines! I’ve massively changed my diet & lost weight naturally about a stone. I’m nearly in healthy weight range. Only drugs for me too 😞 has GF changed your episodes?

waveylines profile image
waveylines in reply to Pigleywigley

My heart rate has dropped significantly since I went gluten free.....unexpected bonus!

FancyPants54 profile image
FancyPants54 in reply to waveylines

I find it really depressing when people say that. Like it's inevitable. I don't think it is necessarily. Lots of people live with this without being ruled by it.

waveylines profile image
waveylines in reply to FancyPants54

Thanks FancyPants for the reassurance. Ive been doing well on Verpamil.......long may it last!!

wilsond profile image
wilsond

Well I used to use flec. as a pip.but only 200 mg . I had several small episodes a week and then started every three weeks or so with more extensive and went on daily instead.Never had the other drug but my neighbour says it great for her xx

Pigleywigley profile image
Pigleywigley in reply to wilsond

Thank you Wilsond just weighing up my options!

Lilypocket profile image
Lilypocket

HelloI have an episode every month on average but not very symptomatic - just a bit breathless and light headed. I take Slow Release Flecainide 200 and Bisoprolol 3.75. Has your Dr considered putting you on a daily dose of Flecainide to see if that helps? You would probably feel less rotten if you are not taking a once -off big dose. It might - I say might 😊- diminish your episodes by preventing or lessening them. It's strange as I was on Sotalol before and had infrequent but long episodes (24 hrs). When I was changed to Flecainide I started having more frequent episodes but they were (are)shorter.

As Bob said I consider myself lucky at the moment as I self convert and have only been to A and E twice since 2012. I hope to have an ablation eventually but obviously hospital beds are needed for far more serious things right now.

Take care x

Pigleywigley profile image
Pigleywigley in reply to Lilypocket

Thank you Lilypocket. I’m talking about Meds at my next Appmt. Ablation is not an option for me due to previous heart surgery sadly so getting meds right going to be important!

Lilypocket profile image
Lilypocket in reply to Pigleywigley

Well as many have explained here an ablation isn't always successful and if meds help many there is no reason for them not to help you.😊I think I'm at the same stage as you with the Afib.

Hope your Dr's meeting brings solutions.

Take care

Clarrie profile image
Clarrie

My AF is every 7-10 days and lasts from 24-48 hours. I am on Sotalol and take an extra 80mg when I first go into AF.

Pigleywigley profile image
Pigleywigley in reply to Clarrie

Mine are long too but PIP gets me converted so far 🙏

Gertsen profile image
Gertsen in reply to Clarrie

Sounds a bit like me I am on bisoprolol and apixaban sotalol did not agree with me. I can usually manage well when I have them am in one at the moment but do get tired my rate seem to come down to within the normal rate half way through. I assume I will go into permanent at one stage.

Pigleywigley profile image
Pigleywigley in reply to Gertsen

Mine drops too after the initial crazy rate!

Rubymurray25 profile image
Rubymurray25

I was on Sotalol and used Flecainide 100mg as my initial PIP dose and then if that didn't work a further 100mg after an hour and that seemed to work very well as the AF episodes only happened about every three months. The AF episodes became more frequent so I had an ablation and was put on Flecainide permanently , worked for awhile until my second ablation and I was then put on Bisoprolol and had Flecainide as my PIP but this time 300mg dose in one hit if the AF came on ( being the maximum dose in a 24 hour period ) , and again that worked for about 6 months and then following two prolonged episodes close together where the PIP didn't work I was put on Amiodarone which has worked really well for 7 months , however I had to stop as it was affecting my eyes and have now been put on Dronedarone as my EP said it wouldn't have the side affects I was experiencing with Amiodarone. I went in a couple of weeks ago for my third ablation but following my ECG whilst being prepared the consultant spoke to me and said that since the decision to give me a 3rd some 7 months earlier, the Amiodarone had calmed my heart down so the ablation was cancelled there and then, so I am hoping that the Dronedarone will work as well. Good luck going forward.

Pigleywigley profile image
Pigleywigley in reply to Rubymurray25

Thanks Rubymurray! Dronederone recommended for me too not decided to take it yet. Glad things have settled for you, lots of hope 🤞

Bambi65 profile image
Bambi65

good morning.... My monster pops in 2-3x a week with a HR between 140-190 and last from 2-30 hours. I will take my PIP if my heart rate is over 160 and is lasting more than 2 hours. Diltizen is my PIP

Pigleywigley profile image
Pigleywigley in reply to Bambi65

Thanks Bambi - love the monster 👿 reference Agree it’s a monster! Sorry your episodes are as frequent. Have you had ablation?

Bambi65 profile image
Bambi65 in reply to Pigleywigley

No, I will not have an ablation. If it got rid of it once and for all, I may consider it. I hear too many people here having one after another. I can deal with my monster and have been for over 6 years now. If I was going to have anything done at all, it would be a Wolf Mini Maze done in Houston, Tx by Dr. Wolf himself. With his percentages in the 94-98% success rate and no more meds and no blood thinners, that would be the only consideration. Due to my sever white coat syndrome, my monster and I share my body but I control the head.

Pigleywigley profile image
Pigleywigley in reply to Bambi65

Going to read up on the Wolf procedure. Don’t think it’s done in UK. Would love to be off meds 😞 good luck

Bambi65 profile image
Bambi65 in reply to Pigleywigley

lots of reading to do. He has a web site with full description and also videos.

Tomred profile image
Tomred

Hi i have episodes every 10 to 14 days approx lasting approx 24 hrs I take 400 mg dronederone plus 1.25 mg bisoprolol with the meds it is at much slower rate than without I'm 60 years old no anticoagulant until 65 ep says

Tomred profile image
Tomred in reply to Tomred

- that's 400 mg dronederone twice per day (sorry)

Pigleywigley profile image
Pigleywigley in reply to Tomred

Hi Tomred you ok on dronederone?

Tomred profile image
Tomred in reply to Pigleywigley

So far I am on dronederone approx a year and a half seem to be tolerating it ok it hasn't stopped paf as ep said he hoped I get bloods taken once every 2 months missed a few goes cos of C ovid but resumed this morning results on Friday as I say hasn't stopped paf but has slowed it all down a good bit I'm soon going to see go to see if I should stay on it or maybe try something else do you take it and are you ok on it

Pigleywigley profile image
Pigleywigley in reply to Tomred

It’s been recommended but I’ve not decided yet!

Tomred profile image
Tomred in reply to Pigleywigley

It was prescribed to me after going into afib on the treadmill stress test after which I was taken straight for cardioversion all very alarming at the time cardioversion didn't return me to normal sinus rtyhym so it was an overnigh stay on the drip maybe amioderone I think which brought me back to nsr I was reluctant to go on meds but realised I needed something but didn't start dronederone until a couple of months later as I've said it and bisoprolol have slowed things somewhat before my pulse was sky high fast and erratic now things aren't as pronounced except tiredness fatigue

Gladstone001 profile image
Gladstone001

Hi Pigleywigley,You may wish to read my story on this forum:

healthunlocked.com/afassoci...............

Lots of similarities to your story. However, I am now using some specific supplements (incl magnesium as recommended by Dr Gupta) and have my PAF well under control...

regards,

Gladstone001

Pigleywigley profile image
Pigleywigley in reply to Gladstone001

I’ve just read your story yes similar. I too have lots of warning ectopics (more than usual!). I’m going to talk to Dr Gupta about supplements in may & see what he says. Sounds like you have done extensive trying out to get the mix right for you.

Snowgirl65 profile image
Snowgirl65

Hello Pigleywigley -- My PAFs are coming once every 10-12 days lasting up to 10 hours. I'm having a radio-frequency ablation in 9 days. The sudden frequency of events resulted from my having Covid in December when episodes dramatically increased.

Pigleywigley profile image
Pigleywigley in reply to Snowgirl65

Thanks showgirl. Good luck. I can’t have ablation 🥺

Pigleywigley profile image
Pigleywigley in reply to Pigleywigley

Oops snow not show!

Weldon123 profile image
Weldon123

Hello from Canada. Af for 20 years. Tried every med in the book but none prevented af except amiodarone. On it for six weeks but felt like the living dead. Stopped taking it and did not have another episode for six months. Of course it went back to every 7-10 days eventually. EP put me on flecainide 50 mg 2x day and low dose digoxin. Worked like a charm. No more episodes! Cut pills in half...still okay. Two weeks ago I stopped the pills altogether, but yesterday went into af for 12 hours. Back on full dose again, but will cut in half after a week or two. Not recommending anything, just telling you my experience. EP says pip would not do for me as episodes were too frequent. I feel like a slug on meds, but the alternative is worse. Good luck!

Pigleywigley profile image
Pigleywigley in reply to Weldon123

Thank you really hopeful story I hate meds too but going to have to get used to them!

Cookie24 profile image
Cookie24

Flecainide did not suit me. I did better on Propafenone.

Pigleywigley profile image
Pigleywigley in reply to Cookie24

What didn’t suit you? I find 24 hours after taking my flec pip dreadful 🥺

Cookie24 profile image
Cookie24 in reply to Pigleywigley

I think it made my afib worse.

indy64 profile image
indy64

To me, the PIP is purely interventional to restore SR without cadioversion. (It's interesting reading about how long people in Britain have to wait for a cardioversion compated to here in the US) No longer on an anti-afib med as all but Amiodarone prolonged my QTc interval and Amio is not a particularly pleasant drug for long term use.

Pigleywigley profile image
Pigleywigley in reply to indy64

Yes quite a lot of difference in uk compared to states for treatment. Ablation seeming to be first lime of defence in states.

KipperJohn profile image
KipperJohn

After 2 ablations in 2015 and 2016 I was eventually AF free for about 3 years which certainly helped me getting through my successful prostate cancer treatment. Over the last 18 months I’ve had an increasing number of episodes lasting from a few hours to a few days. I’ve never been discharged and am monitored by the arrhythmia nurse and EP. We discussed (remotely) what the next steps might be eg PIP, another ablation and so on. Neither of us were keen on another ablation as I’m 73, take a long time to heal and he wasn’t confident I would be benefit as before. We agreed to wait a bit longer - he wasn’t worried about me as he sees all my ECGS and knows my history well, plus I’m on medication that suits me - metoprolol, losartan, Apixaban, simvastatin and which offer good protection. We know it’s such a degenerative disease that learning to live with it, adopting a suitable lifestyle, diet, exercise etc is by far the biggest challenge.

philmondo profile image
philmondo

Hi, at first I could go a couple of months or more between episodes. Over a period of 4 or 5 years though they became much more frequent, so that I was getting them at least once a week. Mine tend to last 24 to 48 hours, and this combined with the increased frequency was starting to get me down. Up until that point I'd resisted going on medication, opting instead to put up with it and try to control with diet etc. However I had to concede that this wasn't working, and asked my consultant to put me on the flec. This he did, and things have been vastly better for the last 3 months.

Pigleywigley profile image
Pigleywigley in reply to philmondo

That’s good phil. I’m wondering whether to not have the flec 🤷🏼‍♀️ Weighing it all up

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