Help from anyone would be hugely appreciated. Very Symptomatic AF

[Danlovell]

I only have paroxysmal AF and when i have an episode it feels absolitely awful. Flip flops chest, tightness etc. How would i ever cope if it turns permanent? im 26 and because of how bad it feels when im in it. i think I'd rather be dead than have it permanent because of that constant awful feeling in chest :'(. Having it for half hour is incredibly difficult to get througg sorry to be depressed and thanks to all you lovely people for replying in advance.

[10gingercats]

Many people who have permanent Afib. do not know they have it. I am one of them.This is how my Afib started or cobtinued after a very short spell of flipping and flopping and a couple of 'attacks'. I have had Afib for at least 10 years and possibly much longer. so take courage it is unlikely to be as you expect in perm. Afib. should yours change and may even be much more liveable with.

[BobD Volunteer]

Many people who have permanent AF are totally unaware of it. Apparently the body gets used to it and adapts. In fact at one patient's day conference a few years ago a member told a leading EP that his AF was permanent and was told that he was " a lucky b*gger" .

That aside Dan, get used to wha tyou have for now and don't even think about what may never happen. Trust me there are a lot worse things to have!

[CDreamer]

Hi Dan - sorry to hear that you are feeling so bad. Actually PAF (Paroxysmal) is often a lot, lot more symptomatic than persistent.

It would help if you could give us a little more detail such as how many episodes you have had, if you have seen a cardiologist or EP and if you have been prescribed drugs, if you episodes come out of nowhere or to your knowledge if they are related to lifestyle choices? (No judgements here!)

The feelings are uncomfortable but they are not an emergency so the best way to get through them is self talk and focussed breathing and keeping calm and telling yourself that these are just sensations. Very often the more distressed and anxious you become, the worse the symptoms.

Do you monitor your HR? Do you know how to take your pulse or use a monitor such as Kardia?

Knowledge is potential power so if you can inform yourself about AF it will really help and we would suggest you start here

heartrhythmalliance.org/afa...

I know it sounds very strange but you do actually get used to the symptoms and learn how to manage your reaction to the condition over time - but there are treatment options and lifestyle choices which will help.

[TRheart13]

My episodes could be so intense: chest pain, sweating, dizziness..made me think I was having a heart attack! I often said I could not live like this if it were a permanent condition & would find myself limiting my activities in fear of provoking an episode. In contrast, my mother’s 85 year old neighbor is in permanent afib and has no symptoms at all. I guess we just got lucky! I’m only a few months out from my ablation, so I can’t say for sure that I am “cured” , but the EP did say the younger you are, the better chance of a successful ablation.

[7164 in reply to TRheart13]

TRheart13

I too have paf and very symptomatic. I too wonder how to live like this and wonder what to do?

Did your ablation help?

Rod

[SpritzerAce]

Hi there ! Totally understood that awful feeling whenever you are having an episode. But just like others have been saying, there could be other worse conditions to have. And as cliche as it may sound we do get use to it and learn to manage it better over time. I have had SVT for 10 years and AF for 3 years. It is still an awful feeling when it strikes but with a positive mind and knowing that it is not life threatening is quite a comforting thought. Unless you are at a high risk of stroke (your CHAD score is high) or have other symptoms accompanying the AF such as shortness of breath, dizziness, feeling faint etc you need to go to the A&E and consult your EP. Otherwise we just need to weather it out by staying calm and doing breathing exercise and hope that we will revert to normal rhythm in a couple of minutes or hours. It is easier for me to say this when I am not in AF .. ha ha. I will also panic when it strikes, every time, but then I will start doing what I mentioned above and things will calm down. This is my go to ‘place’ when I am down with AF - just reading posts from others is comforting or when I just need to rant. Awesome people here. All the best to you. You are not alone.

[RoyM]

I have been in permenant AF for over three years now. It is so much better than when I was suffering episodes of PAF. I don't suffer any symptoms at all except perhaps the top 10% of my ability to run or intensive gym work but I can live with that. I have stopped chasing the holy grail of SR and I have now been discharged from the hospital after three years of monitoring. My medication consists of 1.25mg Bisoporol and Apixaban. I am 72 Cheers Roy

[7164 in reply to RoyM]

Roy

We’re you very symptomatic?

Rod

[RoyM in reply to 7164]

Yes I was when I suffered with PAF, raised heart rate...wiped out physically. It was a huge relief when I went into Permanent AF all the previous problems when being in PAF stopped.

[Cliff_G]

Hi Dan, sorry to hear this. Yes, 26 is quite young to get AF. Dr Sanjay Gupta (check on Youtube) talks about AF now being seen as effectively two different diseases. One, in younger folk, who have no other heart disease, where it tends to be more symptomatic and debilitating, often vagal, and "is" the disease of AF. The other occurs as a "side effect" of other heart disease, in older folk, and in whom it is less symptomatic. It tends to be the latter who "just live with it"/ "don't notice it", and those like yourself (and me when I first had it at the age of 40) who really suffer. I always wondered how I would live with it permanently and is why I had an ablation. But when I was 63 I had an aortic dissection and 14 hrs of open chest surgery, and went back into a post-operative AF. At first when I came round I was so ill I didn't notice, but soon I did and hated it, again. But slowly, over 3 months, I found it became easier to live with. Firstly, those ectopics at night which woke me up, couldn't happen and I started sleeping better. Secondly, the beta blocker I was on damped down the strength of the errant heart beats and made them easier to live with. Thirdly, the heart does adapt by making a hormone (ANP) which helps it to cope (same one as makes you pee a lot when you start an attacke). Fourthly, going into and out of AF is definitely worse than just settling into it. Probably other stuff too. After a couple of months I realised I was dealing with it better, and that maybe this was how those who "didn't notice it" coped. I am still very glad I then converted with Amiodarone, a challenge yet to come to come off it. So, that's my story. One thing, I have obliquely mentioned ablation. Be aware that ablatio s have a better chance of working whilst the AF is still paroxysmal, so if that is on your list of possibilities, then try to make it happen asap if you decide that's what you want. Good luck and best wishes.

That Sanjay Gupta video: youtu.be/LoAaIyoCYj0(Not working as expected?)

[Blavet]

Hi Dan.

I was just like you. It was awful, just couldn’t cope with it. I had a pulmonary vein isolation, after a decade of PAF 4 years ago, which immediately stopped the PAF and I’m still free of it today. Maybe talk to an Electrophysiologist, a cardiologist who specialises in arrhythmias.

Don’t give up hope, there is help out there. PAF is symptomatic more so than permanent AF. Hope this advice helps.

[7164 in reply to Blavet]

Blavet

I have very symptomatic AF and now thinking ablation

I am 61 and have no other illness

Your observations/ help please

[Blavet in reply to 7164]

Hi there. I have had 2 ablations so far. I was 29 when my rhythm problems started. I had something called an AV nodal reentry tachycardia, which is quite common in young people, so I had a RF ablation using heat to burn the fast pathway in the AV node which was successful, essentially breaking the electrical circuit causing the fast heart rate, but a few weeks later after being off beta blockers I kept going into AF so back on the beta blockers which helped but ended up with PAF. This went on for years until finally in 2016 I had a pulmonary vein isolation/ablation which immediately stopped the AF and I’m fine now. I have been very fortunate really. All my echos have been normal with no enlarged atria. AF can come from not just the heart/atria but the pulmonary veins too. My advice is to discuss with a consultant who specialises in heart rhythm disorders which you have probably done.

Ablation does work but some people have their AV node totally ablated which means they need a pacemaker. There is a lot to think about and if you are very symptomatic, ablation can be the way forward. Good luck.

[Hidden]

First of all, I would speak to a consultant, to see if he can shed some light on why you have acquired PAF at a relatively young age. I was diagnosed with PAF last year (I’m 64) and the consultant mentioned in passing that he was treating an increasing number of younger people with AF. The reason isn’t known, but he suspects that it is related to being overweight./diet

If you are not able to speak to a consultant, then you could speak to one of the cardiac nurses at British Heart Foundation who are knowledgeable.

Another possibility is that you have done a lot of sport- athletes can aquire the condition. Also, if you have a history of AF or heart conditions in your family you are more likely to aquire it.

Research shows that progression from PAF to permanent AF is associated with alcohol consumption and being overweight as well as frequency of episodes (AF begets AF; i.e. the heart remodels over time ), so deal with the first two if they are issues for you. PAF is not less dangerous than AF, contrary to many people’s intuitions- the going into and coming out of the arrhythmia is problematic for the heart. The stroke risk depends on your CHADSVASK score.

You would probably be a good candidate for an ablation and they will probably do this sooner rather than later, before remodelling of the heart occurs. My main point would be, as I said above, that you need to get much more information on your individual outlook.

[Dee1982]

I have AFib but I don’t know what kind l experience flip flops fluttering skipped beats fast heart rate dizziness l could really use some help

[Reo65]

I have the same and it ended up as persistant so non stop for 6 weeks until cardioversion. Funny thing is you actually get used to it. Although my energy levels were lower when walking that was all I noticed. It was actually a bit of a pleasent break from wondering when it would next kick off because it was already doing the flip flopping....so every cloud has a silver lining. I'm now recovering from rf ablation. Hope that helps ease your mind. You really do get used to it. 😊

[Hidden]

It might be due to something in your diet. Keep a close watch on what you eat and drink and perhaps you can find what is triggering your Afib. Here is what I found that triggers mine:

------------------------------------

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??

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:

Cardiab.biomedcentral.com/articles/10.1186/1475-2840-7-28

[KMRobbo]

Investigate an ablation . I had one and I am 20 months without afib and 17 months without drugs. I did not want to take drugs the rest of my days

Was 57 when I had the ablation no problem to me. Should be easier still for a 26 year old! Don't take my word for it go to see an EP to see if you are right for one.

Best wishes

[Danlovell in reply to KMRobbo]

Thanks for you advice seeing a doc on 9th Jan

[KMRobbo in reply to Danlovell]

Best wishes

[madametobacco49]

I get it Dan--I feel it like you do--not fun--but you never know with this. Enjoy the periods of being fib free knowing you can and have gotten thru it before-- A whole new set of mental gymnastics come into play with this. Self talk,deep breathing--and the thing that works the best for me--diversion. I get into something besides waiting for the next thump or quiver and pretty soon I think" omg I havent been feeling it" This takes practice and time but it works. We can not "wait for it" as they say--because it will come for sure then, and what a vicious cycle we can get caught up in.Anxiety is a fine fuel for this!!!Believe me when i say I know what the sadness,devastation,and sometimes hoplessness feel like--Never feel alone-I have had it 2 months non-stop now----We dont know what tomorrow will bring and that is another mantra I use on myself alot. Sending hugs and blessings your way....In my thoughts,..Mmet

[Danlovell in reply to madametobacco49]

Thanks so much for your reply. really kind words

[madametobacco49 in reply to Danlovell]

your welcome Dan--Hope this finds you feeling better--MmeT

[Janith]

I have what you have ... maybe four episodes in four years! However, when l do have an episode, it is a doozy! It terrifies me. I thought for sure l would die during the very first one because l had no idea what was wrong with me. It happened in the middle of the night. My husband was abroad. I was totally alone except for my cat. We have a hospital five minutes away. I dressed and drove myself to the emergency room. They immediately admitted me ... l was taken inside and this young doctor came out and said ... “oh you are in afib” ... as if it was NOTHING! I was put on an iv and it converted within four hours. The rest is history ... it’s all about DIET. BE EXCEEDINGLY CAREFUL WHAT YOU EAT AND DRINK.