I have had AFib for as long as I can remember, but it has become gradually worse over the last 4 years. I have not had any surgery, and I haven't had a cardioversion. I am on rate control meds only.
I will be seeing an EP in September, but my current cardiologist believes that I have been in AFib too long for any surgeries to be successful.
I would like to know whether this could be the case? As I am in permanent/persistent AFib.
Difficult question. Permanent AF is only an agreement between doctor and patient that efforts to return to NSR are futile. Persistent AF means that AF events last longer than seven days and needs intervention to return NSR. You say you have had no such intervention.
The first treatment the EP may try is cardioversion (DCCV) either alone or assisted with amiodarone , a powerful anti arrhythmic drug, to see if NSR can be returned and if you feel better in such state, If it can for however short a period then a procedure such as ablation may be effective. If the answer is no then ablation would be very unlikely to help.
That said I am a little puzzled that you say your AF has become worse recently since you also suggest that you are in AF all the time.
Thank you for your reply. What I meant by gradually getting worse was, I only had a few AFib episodes ever so often, but for the last four years my heart never goes into NSR and I am always aware of my pulse. My rate is also higher than what it used to be. My doctor was very much against referring me to an EP as he says that my future treatment will only be rate control and not rhythm as it is very unlikely that I will ever go back into NSR.
I’m wondering why your doctor thinks you are unlikely to ever go back to NSR if nothing has ever been tried?
There are treatments which work for those in persistent AF, however whether or not they would be accessible for you is another matter, as they are for many people depending upon age, co-morbidities, personal tolerances, expertise of clinician and choice.
Hi C Dreamer
The priv C.Specialist said I would not be offered because of
1) Age
2) BMI - weight (2" over at the waist)
3) Persistent
But the Auckland DHB public said that I had an enlarged heart chamber behind. The ECHO done in Feb 2021 showed it.
In NZ they don't worry about the rhythmn so much as the RATE. And the RATE needs to be CONTROLLED and under 100. Especially so that operations can be done e.g Ablation.
cheri JOY. 73. (NZ)
Hello and welcome to the forum. I agree with everything Bob has said, generally the longer some one has been in persistent AF, the more difficult it is to treat. You say that you are only taking rate control medication but I hope you have been assessed regarding the need to take an anticoagulant as this is very important for minimising the stroke risk which comes with AF. There is nothing to add to Bob’s comments regarding having a cardioversion as this is an important part of assessing your suitability for an ablation. It might also be worth researching the hybrid MiniMaze procedure which carries slightly more risk and is more difficult to obtain on the NHS but it would be worth seeking your EP’s opinion in September.
It would be helpful to know what you mean by getting worse. Generally, patients in persistent/permanent AF are on medication to keep their condition relatively stable so their symptoms tend to remain stable so if your heart rate is fluctuating then make sure your EP is aware……good luck with the appointment.
Thanks. I am South African , and our medical insurance schemes here are very basic, and won't cover me as I have a pre existing condition. Anyway, that's neither here nor there, my biggest issue is having to pay privately for something that has a low success rate, where as I can just continue on my medication (which is a lot less expensive). I am on cardiac aspirin as my INR is within normal range, and I am not at risk at the moment, but that might change. They are monitoring me bi annually. My heart rate is relatively stable throughout the day, but it does have a tendency to increase in the evenings.
How do you know your INR is normal if not on warfarin please? That's usually the way people test if they are taking it correctly. I hope you get good advice and that they only put you forward forablation if there us good chance of success
Thanks for the additional information, please let us know how you get on with your EP.
Have a look online to assess your chadsvasc score as aspirin is not an anticoagulant. Your age is relevant too
Thanks, I am only 35 with no Hypertension or Diabetes. I am low risk, that is why I am on aspirin and NOT Warfarin.
Sorry its so troublesome at your age. Are you a sportsperson?
No, not at all. I am unlucky!
Having had AF for 17 years, three ablations and numerous cardioversions my advice to everyone diagnosed with AF is the following:
1. Be Aware you are most unlikely to die from AF. I used to think that the way my heart bounced around I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.
4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or online. If you do your heart will protest. Also avoid tight clothing around your waist.
5. Try supplementing with magnesium, any type except oxide (I use glycinate from YourSupplements and also take vitamins B12, D3, C and zinc). I feel really well and there's nothing I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
Hope this will help you.
Jean
Wow! Thank you so very much for this. I work as an Online English Teacher, and I am seated for about 9 hours a day, I have such terrible chest and back pain, and when you mentioned, don't slouch, it makes perfect sense now! As for the diet, I must confess, I am not following the healthiest of diets, I don't smoke or drink, but I binge on sugar and bad stuff quite often. Having said that, I am also very much exercise sensitive. I am not able to be active, as I am deathly afraid of getting sick (health anxiety). So the moment my heart right spikes from walking, I am immediately convinced I am going to have a heart attack!
I’ve just taken one part of your advice, and hoping that I stick to it! I’ve removed the heart rate showing all the time on my watch, and the easier one-touch access to check it. The weather and date should be more relaxing. I’ve been getting far too worked up waiting for echo results to find out if I can use Flecainide or not. My heart felt fluttery last night and I even sent a Kardia ECG off for analysis. It seemed to have PACs, and PVCs (who knew that wasn’t a fashion statement from the sixties) and long QRS. It said to get a physician review but I don’t have any contact so far. Made a change from the constant ‘bradycardia’ when not in A Fib.
Then I decided that I would have no idea of that if I hadn’t got the Kardia, which I really only got for checking when in AF ready for the ‘pill in the pocket’. I’ve had multiple ECGs since February, a five day monitor and an echocardiogram.
I’ve had these fluttery feelings for years, particularly after caffeine, which I’ve now cut out.
So really, if the professionals were worried about any of my scans etc, I reckon I would have heard from them,
So I shall just possess my soul in patience, enjoy the grandchildren and try to chill.
Jean what great advise , Iam going to take some of this also … already taking magnesium taurate, it does help ..but this heat has made my ectopic beats come back with vengeance 🥵 plus had about 4 pauses in my heart beat where I think Iam going to pass out ! I’ve told EP and consultant over the years , they don’t seem concerned unless I’ve actually passed out 🤷🏻♀️ But older Iam getting it scares the hell out of me ! My husband has Alzheimer’s so I worried if I pass out he won’t know what to do 😬 hey ho it’s what it is ..
thank you for your advise to us all
HiHave a banana (Mag) instead.
Too much Magnesium is toxic and you should have a blood test for magnesium. and talk to your dR. B12 you can take a supplement but it will be excreted if necessary.
I get tested once a year for B12. Deficient in 2010 and take a nugget under the tongue on Sunday and Monday which keeps me between 400-500. Gold top Solgar. It has been difficult to obtain 6 mths ago.
A Tamarillo has VIT C and A and potassium, etc in it. I bought one its winter here big and juicy. Cost me $2.74 but no waste. Better than a cookie.
cheers JOY. 73. (NZ)
Hi JeanWhen I had rapid, persistent H/R @ 186 I should have been changed from Metroprolol. Asked for a specialist who changed me to Bisoprolol 156. Still not controlled and left.
No quality of life I wrote to them. sweating profusely on exertion, need to stop on flat, on elevations etc.
I had had enough. Locum dr suggested that I go private to someone she knew.
Tweaked on Diltiazem 120mg am and to separate BB Bisoprolol pm.
CONTROLLED now BP123/72. Day H/R avge 77-88. Night 47
Cant have Ablation or conversion as I have an enlarged heart chamber.
The end. Meds above and 110mg Pradaxa twice daily for my heart.
He told me that I would have AF for the rest of my life Boo Who but CONTROLLED.
There are risks with ablations I see.
cheri. JOY. 73. (NZ)
Pleased to hear your new medication has been successful. It's a shame that sometimes we have to fight to get help to solve our AF rhythms. I'm hearing quite a lot of reports on this forum how Diltiazem is helping members to have a better heart rhythm. Hope you stay well now.
Jean
What a brilliant, frank, and uplifting description of how you have stoped obsessing about your AF, and getting on with your life, your positive outlook on your life with AF is simply wonderful!!! I have PAF and on one “blue light” ambulance visit to hospital, the cardiologist (who was my age early 60’s) put his hand on mine and said with a broad grin on his face, “this won’t kill you, we are the same age, I myself have it, and although a complete nuisance, and initial diagnosis can be a shock, by healthy eating, moderate exercise, good quality sleep, and most of all avoid stress at all costs, even at the expense of telling certain people, often those close to you, that you cannot continue to be at beck and call for errands, house repairs, being a taxi service etc etc, I have since that advice, had to minimise seeing certain family members, learned how to say “much as I’d love to help I simply cannot for my heaths sake” and they (the person expecting way too much from you, physically and emotionally, will either “accept” your situation, and remain close to you, or take the hump, and shut you out! Job done either way! and my AF has dramatically reduced. I take magnesium and potassium (they are essential electrolytes, that assist good electrical conduction in the heart, once again another major reduction in episodes by taking these inexpensive supplements, hope this all helps ☺️
People with AF don't usually have heart attacks. We are said to be 5 times more likely than the average person to have a stroke. Usually this can be prevented though by taking anticoagulants. If you are below age 60 a stroke is not thought to be so likely.
Please do your best to change your diet, you will be amazed at how much better you'll feel without sugar and artificial additives in your food.
Jean
Jean has given some really useful pointers - the easiest and cheapest fix of all is Lifestyle Changes.
Cut the sugar - if you are addicted you may need to reduce gradually
Address the anxiety - relaxation and breathing - working on a positive plan to avoid getting sick is empowering.
Work on your Posture and do some gentle exercise every day 15-20 mins of moderate walking per day will help.
Sleep can also affect our health so ensure you get good quality sleep.
Best wishes
I'm with Jean and CDreamer for practical advice. I'm doing lots of online teaching now. Make sure your schedule breaks after each session. I won't do more than 2 hours at a time and that's co teaching. Otherwise it's an hour wuth miminum 15 minutes off in-between. Get yourself a decent sitting arrangement! I now use a kneeling chair and find it excellent. I also- many years ago- invested in a very expensive desk chair manufactured by a company that specialises in ergonomics. You'll find a good, flexible and comfortable seating arrangement will make all the difference. Plus the rests.
People underestimate the strain of teaching online- it's a big call on the brain and body. It will also not be improving you blood pressure. Walk around between sessions if you can and do some gentle yoga stretches.
As for being in 'permanent AF' after 4 years. I'd say that's a label only. My own EP here in the UK told me he could do ablation on persistent AF and from what I understand, that's your current state.
Try the lifestyle and work environment changes anyway!
HiI too am in rapid persistent H/R Day. But night 47 H/R.
On Metroprolol 186 H/R Night as above
On Bisoprolol 156 H/R Night as above.
Dec 2021 went to Priv Cardiac Specialist. History was taken. He was interested.
You as I was needed to be controlled.
Be careful with CCB Diltiazem as on 1/2 dose(180mg) my h/r dropped 105 H./R within two hours.
Twinked my meds are
Diltiazem 120mg am. and 2.5mg Bisoprolol pm.
Don't worry about frequency as RATE is most important. Once under 100 with a new BP he will be happy.
My energy is flowing back slowly after an op in March removing J&J mesh. Inflammation is a trigger for AF and thyroid problems. I had thyroid with 12 lymph nodes removed Feb 2020. Unfortunately it caused an Embollic Stroke which was mild but left with AF carrying on, dropsy right hand and face drop (cured) with talk and swallowing with some problem.
I awoke at 2am with a sore head. I didnt look in the mirror and went back to sleep.
Now BP 123/72. with day h/r avge 77-88 and night 47.
I saw the Akld Cardiac Specialist 3 weeks ago. I have an enlarged heart chamber so no Ablation. I had no attempt for conversion.
So your heart needs to be scanned to look into all aspects.
A friend had had AF for years but he was not in persistent. Younger than me he was found to have two electrical faulty responses. He has come off all meds including the 4 he was taking and PIP. No more AF since the procedure last October 21.
cheri JOY 73 (NZ)
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