This is a wonderful group and you have all been so helpful in the past. I have had paroxysmal a fib since 2018. I had one episode in 2014, and then nothing for 5 years.
I had a pulmonary embolism and presented at the ER with severe chest pain and A Fib with RVR. My rates typically go up to 176-200. 200 is the odd AF out. It has happened, but doesn’t happen often.
I was having episodes every three months, and now I get them every 6 weeks to three months. Almost like clock work. Flecainide gets me out in about 2 hours sometimes less, sometimes more.
My horrible ObamaCare insurance refused to pay for my second ablation with Dr. Natale in Austin. My first was one way Mt. Sinai in NYC. I am moving to Florida and got a great new PPO that will cover my second ablation and it is being planned for January. Thank God!
When I get episodes, I freak out and have panic anxiety. It is so uncomfortable for me. I could never live with it full time. Knowing that a fib is progressive, is that what I’m in for? Will I one day have it all the time? Can they may it so you don’t feel it? The side effects from Flec side are just awful. It makes me so full of anxiety for three days after I’m not even close to myself.
I’m praying this ablation works, but I’m scared of progression and just wanted others advice knowing we are not the same and no two cases are the same.
I’m prepared to have as many ablations as I need. They don’t bother me. I just want to stop the progression or slow it down. I recently read that space make can help you not feel it if you go into persistent a fib. So basically my fear is being in a fib all the time and how I would cope with that feeling? It is so awful, I can barley ha dale it for two hours. And experience or advice?
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Amurray77
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When you say that "I recently read that space make can help you not feel it if you go into persistent a fib." What does that mean?
I have the same fears as you have. I often wonder if this is something that I could live with forever. I have heard from others who live in afib, (including my father) that although they know its there, they do not feel it as much. I think the body and mind gets used to the 'new' beat and the feeling would be less noticable. I hope that it doesn't progress and your ablation fixes things.
Side note: the ectopic beats are the worst for me.
Sorry to hear your rough ride through non socialised healthcare. Hope you get better access soon. We have variable waiting lists here but good care generally for a fraction of what you guys pay.
Hope you get somewhere soon
Meantime..aid yourself by eating Ultra healthily,no stimulants,keep stress down . Not preaching but offering advice..
I have seen a few posts on here saying persistent or permanent AFib is more manageable than the random strikes of paroxsymal AF.
please don't worry. I have had afib for many years and it is now permanent and I must I say it is nothing like as bad as paroxymal. I just have to be careful and take things at my own pace but I do not have the horror of the 'attacks' , the throbbing and pain etc. Hope this puts your mind at ease.xx
Been in permenant AF for over 3 years now. Previousley I suffered from PAF for about 7 years in and out of NSR was awful, high heart rate, no energy and generally feeling terrible. In May 2016 I went into permenant and things changed immediatly. Obviusley, my heart is not beating correctly but I can comfortably do everything I could do before the onset of AF. I swim, cycle, walk miles but I have lost the top 10% of my ability to exercise at the gym.....I can live with that. I am 72 year old male. I take Apixiban for stroke protection and 1.5 Bisoprolol. My resting heart rate is in the low to mid sixties. I have long since stopped chasing the holy grail of NSR. Good luck.
Hi - firstly PAF does not always become Persistent or Permanent but it can be progressive.
Secondly many people in persistent AF report that it is much less symptomatic than having AF coming and going and therefore much easier to live with.
I think we can all resonate with the uncomfortable feelings and the anxiety, although not everyone has those sensations and indeed many people do not even know they have AF.
It sounds as though you have your treatment plan in place and I do hope that works for you. 2nd ablation worked for me for about 3 years but when AF did return, it wasn’t nearly as symptomatic for me and I have never really worried about it as I have had to deal with far worse than AF.
Anxiety is your biggest concern as this is AF’s biggest antagonist - treat the anxiety and you help lessen the impact of the AF.
If you can find some sort of practice which helps you cope with the anxiety - breathing exercises are a really good way to start - Meditation, Mindfulnees, CBT or just plain distraction as then you tend not to focus or think about the sensations and that helps enormously. Anything that takes your mind away from focussing on the AF and/or the sensations or something which gives you pleasure as when we feel pleasured our bodies release endorphins which help cancel the stress hormones which do so much damage.
As you are probably aware, all treatments for AF are considered life enhancing rather than life saving - that means that although it may feel like an emergency to you - it is often not regarded as life threatening by the medical community.
Hopefully, you are anti-coagulated - which in Europe is considered to be the only imperative as a prophylactic treatment against the risk of AF stroke.
Having been through all the treatments I ended up with re-synchronisation pacemaker therapy in preparation for AV node ablation as I started to develop other arrythmias - but since the implantation have only had a couple of episodes of AF of short duration and no bothersome symptoms, although I could still feel the AF. AV node ablation is the last resort of treatments to relieve symptomatic AF although it doesn’t stop the AF, and is intended to improve QOL - which for me - certainly has!
paroxysmal a fib - the easiest way to stop it is stop thinking about it, everytime you feel a flutter think you have won the lottery or something . Taking your mind off afib is 90% of the problem. I know there are medical causes and the creaking gate ( age ) . Getting a medication that suits is also time consuming. I was on Metoprolol with paroxysmal a fib and still had flutters, went onto Bisoprolol 1.25mg and have no flutters, so it is a case of dose adjustment and trial and error. Best of luck
My first definite AFib episode was in April 2007, but, thinking about it now, I may have had some minor ones before that. In the twelve and a half years since then, it has progressed to the extent that the episodes last longer when I do get them, but that rate of progress has been very slow. I think of myself as being lucky because I know for a fact that my twelve and a half years of living with AFib has been nowhere near as taxing as some who have had the condition for a quarter of that time have experienced, but I am evidence that even if someone's AFib is progressive, it can take an awfully long time before it reaches the stage that it has a major impact on your life.
Put this together with the reassuring messages from those who are now in permanent AFib, and the outlook does not need to be as bleak as you may believe it is.
I'm have permanent AF and it was only diagnosed through a routine check up with my GP (he suspecting it when using his stethoscope). Otherwise I don't 'suffer' though I'm not as fit as I was I still go walking, running and swimming etc.
I don't know how/if AF progresses but from this forum it's been obvious to me that we with permanent AF probably get it easy compared with those who get it intermittently.
My insurance allows me to travel. It is multi state. Thank god. I’m seeing Dr. Natale in Austin, TX. He is world famous. He’s been great so far. I wasn’t impressed with NY doctors either. I think they suck worse than Florida. What about the Mayo in Jacksonsillve?
The first time I had Paroxysmal AF I thought I was about to die. It became much worse before i had 11 years of control due to flecainide. Then at am annual checkup I was found to be in persistent AF. I can't feel anything af all.
After an unrelated hospital operation when my heart rate went up to over 190bpm, I was prescribed a beta blocker which slowed my heart rate down for 7 weeks until the first side effect appeared. The second side effect caused hospital admission for two nights. Research showed that a change of beta blocker would not solve the problems of the side effects so I was taken off them.
My resting heart rate is now between 65and 110. It causes no problems.
I'm 74 and only take an anticoagulant for AF, warfarin being my choice after problems with one of the new anticoagulants.
Don't worry.
.
Here is something that stops my Afib, or at least makes it much less severe. Hope it works for you:
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
Very interesting post. I knew about the dehydration and am always careful about that but the sugar thing is new to me. Is it just trial and error how you find out how much sugar you can tolerate or is there a graph somewhere to guide you? I do know that a few weeks ago when we were out for lunch I ate a delicious pastry full of fruit and cream. I don't usually eat these sort of things and later that evening suffered an episode of AF which then went on for 20 hours before it stopped! After reading your post I think there was some connection and i shall being adding sugar to my long list of do's and don't's!!
Unfortunately, finding out your sugar threshold is a trial-and-error sort of thing. It's kind of fund trying to find it, and then getting near it each day to see what happens! Give it a try - can only help you. May even lose a pound or two in the process. Good Luck!
I have been trying to wean myself off of flecainide as I believe it is the culprit that has caused me to gain over 15 pounds. I also think red wine (too much) is what got me on the path of having Afib. I take the blood thinner Eliquis but not as directed as if a tooth brush falls on my toe it all turns purple. Plus every thing really hurts badly if I stub my toe or run into anything or just getting my nails done. I eat very pure, no dairy, vegetables, some fish. Rarely red meat but I have severe IBS. Any alcohol ruins my body. It is the single most damaging thing I do to my body and the hardest thing to control.
I think for me dehydration is key and alcohol, unprocessed food and nothing that has gluten. It is hard and I admire people that can do everything that helps them get better. I am just on
I had really violent and terrifying AF which would strike out of the blue about once every 10 months, then a bit more like once every 5 months. The attacks would last between 15 and 36hrs and I would be useless and terrified. I've never felt anything so awful. I had them for about 7 years.
In mid Feb of this year it kicked off again. Only this time it didn't stop. It took about a month and 1 trip to the A&E to get the beta blockers right and I'm on a blood thinner. I no longer need a BP tablet. The AF is so quiet now that I don't know it's there most of the time.
I am tired all the time and lacking in motivation, but that could be menopause, thyroid or all 3 combined. My last visit to the cardiologist has resulted in an appointment for a cardioversion. He want's to see if I feel better than now if in normal sinus rhythm. I actually have grave doubts about having the procedure. It would be wonderful to be in NSR again, but I know it's not likely to stick. I will go back into AF, probably quickly as I've been in it permanently now for 8.5 months and I can't bear the thought of swapping this thing I can rarely feel for those violent episodes again. I'm 56. I don't know what to do. Don't fancy a full ablation procedure as it's risky and still might not work, or might give me something else worse.
Don't worry about going into permanent AF as in many cases it seems to be much better than the random lottery of paroxysmal AF.
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