I have had at since 2011 every time I go into af it is persistent and only returns to normal after an ablation, of which I have had four over the years I did have a cardio version but that was only effective for about four months .
My question is why do some people in and out of af, for minutes., hours, days etc. Whilst others, like myself to straight into persistent .
Any ideas would be welcome
Hi Mitcham , different hearts/body make up and chemistry I guess. We are all different and although we may share some similar aspects of AF our journeys are never quite the same.
I understood that in permanent AF , for some people the body gets used to it and the symptoms lessen . I suspect that is not the same for everyone, as my episodes come every couple of days and last for many days my symptoms have not lessened in the least on the contrary I am now exhausted all the time and struggling to do things . I am on the waiting list for an ablation.
I would love to know the answer to this Mitcham. I asked a cardiology EP why my newly diagnosed Paroxysmal AF had slid so fast into Persistent. He just said that can happen sometimes. Maybe that's as much as they know right now! I've just been offered my first appointment and hope to get on a waiting list for ablation. But I've established links with an acupuncturist for the recovery stage as there's evidence of improved outcomes eg acupuncture-exeter.co.uk/ac... Hope that persistent af reduces for you.
I've had AF since 1992/3 & my AF was almost always persistent from the start. DCCVs kept me in Sinus for varying amounts of time averaging perhaps 12/18 months and a couple maybe 3/5 years . Hence my tally of 23 dccvs, last one in November 2022. Ablations = 4, last one 2021.
I've had a few short lived episodes of paroxysmal AF ( a new experience to me !) since my last ablation. I can cope with that !I just get on with it. I don't find that the average GP or hospital doc ( apart from EP of course..) know very much about the condition and come up with some odd responses at times to queries that I raise !🤔 lol
Good reply, Jalia !
I also am persistent for 2 years controlled with Metoprolol, avg HR low 80's. Really doesn't have a great effect on my quality of life. Recent echo showed no abnormalities.
May I ask how you control to compare notes ?
Hi mav7, I take the anti arrhythmia drug Disopyramide as a last resort , the only drug which works for me ( in a fashion ...). Its quite an old fashioned drug so not used a great deal. It's supposed to work well for vagally mediated AF. I was first put on this by cardiologist at St Georges in London in the 1990 s
Funny you should ask that, I've asked close to 50 doctors over the years since 1986 when I was diagnosed and not one of them could answer that question. They really don't know and in a perfect world ablations or medication can keep you in NSR but other than that we have to live and try to tolerate it.
It is such a complete mystery. I was paroxysmal at first - but with episodes lasting days rather than hours. About one month apart. Then slightly shorter episodes last summer, followed by one that has just stayed in October.
Less than 48 hours respite with an ablation in December and waiting to find what’s next.
The other puzzling thing is the drugs. I was given dronedarone at first - came out of that episode a day later, but it broke through monthly. Changed to Flecainide PIP - took two days to work the first time, didn’t work the next time. Went on daily Flecainide - 100mg twice a day, with Bisoprolol. Didn’t do a thing for the rhythm. Now back on Bisoprolol only for rate control, and hoping for a cardioversion. Have taken apixaban throughout - so trusting that actually works!
These medicines work for so many people, we are just all so different.
Hi Mitcham, I had PAF for about 3 years and took Sotolol and Apixaban and one day my heart rate plunged resulting in me fainting.
Simultaneously I went into persistent AF. I was hospitalised and had a pacemaker fitted (to stop my heart rate going below 60bpm).
Although I still have AF my heart beat is mildly irregular but it doesn’t bother me at all. Now I take 5mg Bisoprolol and Apixaban and without sounding too dramatic I feel as though I have my life back. Fingers crossed that it stays this way now. I wish you luck with any treatment you may have.
What do you mean you have your life back? Does it work on the pacemaker?
No my pacemaker controls my heart beat/pulse to stop it from dropping too low. I used to have paroxsysmal AF which came in episodes every few days or weeks which was when when my heart was totally out of rythmn and was beating all over the place and with a very high high rate - 180/200 beats per minute. Really horrible & scary. I was cancelling lots of social occasions when I got these episodes as It was impossible for me to function. I had to rest & wait for it to go back to sinus which sometimes took 36 hrs. I took bisoprolol or Flecainide to calm it during these episodes. Now I have persistent AF I don’t know I’ve got it and it doesn’t interrupt my life one little bit even though it’s there all the time. According to my EP and Arrythmia nurse it is well controlled now.
The term to remember when it comes to Afib/AFlutter and many other arythmias is: idiopathic. Find a good EP and trust them implicitly. Ignore all the anecdotal opinions of the non-trained. That path leads to madness.
I most certainly am taking anticoagulant! I am taking Warfarin and will be on this for life. I have no problem with this and consider it to be my friend.
If you have been advised to take an anticoagulant you would be very foolish to decine in my opinion. Just because you are not having regular bouts of AF is of little consequence. You could be having episodes in your sleep, for example, and be unaware. You have AF and should be protected unless your age indicates otherwise. The results of an AF related stroke are particularly devastating.
hi Mitcham, good news ablations normally return you to sinus rhythm. Depending on where you are in the UK you may be able to access a mini maze which has higher long term success rates than ablation when you are persistent. EPs don’t do this, it is done by a cardio thoracic surgeon. Some EPs are aware of the procedure, others are not. It may be worth considering whether it may be the right next step for you
Had 7 cardioversions in 18 months! Finally an ablation in 2020 and still in NSR!!!
Hello, I'm sorry to hear this. It's awful. I had this exact problem until I was properly diagnosed with Graves' and hyperthyroidism, and given metoprolol and flecainide (50 mg) twice daily. The metoprolol is to keep the heart rhythm down and the flecainide is to keep the heart in rhythm. You cannot take flecainde without the metoprolol.
While the cardiologist began taking care of the symptoms of afib, I finally found an endocrinologist who would listen to me. She immediately put me on methimazole to start to calm the thyroid. Her goal is to get the thyroid (it was 3 x upper limit when I started seeing her) to an acceptable number. Within 2 weeks of the methimazole my severe hand tremors and hot flashes went away. If my T4 and T3 are looking good next labs, endo will ask the cardiologist to start titrating off heart meds (currently there is no way to know if the lower thyroid numbers is causing the heart to go back into rhythm as the heart meds are controlling that symptom).
Which brings me to this question: what are your other symptoms?
The method I've described is working for me. I don't know if it would work for you or if you have access to these meds. I would recommend asking your doctor if this protocol might help. I had persistent afib for two years before being properly diagnosed. This is not healthy for anyone and can cause other problems down the road. I really hope you find relief and a good doctor so you can end the nightmare!
PS, you might look into Vitamin D, magnesium and L-Carnitine supplements to support your heart health.
hi dahlia, could you elaborate a bit on why you mention l-carnitine, thanks.
L-Carnitine is an amino acid needed to transport essential fats into mitochondria, which is responsible for energy production, amongst other functions in the body. There are several studies that show the benefits of taking this amino acid, when it comes to angina, congestive heart failure, etc. Same with Taurine. You can do a Google search and find an abundance of information I. The subject,
I found this article and want d to share: thyroidpharmacist.com/artic...
thank you dahlia.
I've been in persistent AF since I was first diagnosed in June 2021. How long I'd had it before then, I don't know. I'm asymptomatic. They made three successive attempts at cardioversion (same day) in October 2021 and none of them was successful. I'm never in sinus rhythm. My EP has not pushed me to have an ablation. He says it has not been established that being in SR prolongs life. And since there are some risks associated with ablation and I'm asymptomatic, I have accepted my AF as a permanent condition. Whether this is a wise decision or not, I don't know. I take just one medication, Eliquis. How and why, after years of having no heart irregularity whatsoever, I would develop AF is a mystery to me. I have to wonder whether it could have had anything to do with my having got the coronavirus vaccine just two months before my AF was discovered (when I went in for a hernia operation and they did a routine EKG). From what I've read, the correlation between the jab and heart conditions (e.g., myocarditis) has primarily been found in men much younger than me. But, who knows?
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