Paroxysmal AF
has anyone else been diagnosed with p... - Atrial Fibrillati...
has anyone else been diagnosed with paroxysmal AF, what does it mean, and what have you been prescribed. /
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ninks01
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BobDVolunteer
Paroxysmal AF or atrial fibrillation means that it comes and goes on its own at will.
The first drug usually prescribed is a beta blocker such as bisoprolol and if you fall into the risk category hopefully an anticoagulant to help prevent strokes of which AF makes us five time more at risk.
Ask any questions here and we will try to answer but why not go to AF Association website and read till you drop so you have some understanding of what this mongrel condition is about.
Hi, Agree with BobD.
I was diagnosed in Jan 2010 with the added complication of being asymptomatic. Effectively this means I can be in paroxysmal AF and not know it, i.e.. have no symptoms. Given my age ( now 78) that gives me some unwelcome risks. Was originally started on Bisoprolol am still on it. Also Warfarin at the same time - still on it. No sweat.
AF controlled by meds and diet.
ninks01 in reply to
Thanx for taking time to reply, when you say no symptoms , what does that mean /........sounding a bit dim here.....cheers.
It means that you don’t feel anything. The thing with PAF (Paroxysmal Atrial Fibrilation) is that some people are not aware of anything wrong whilst others have all sorts of symptoms such as feeling very strong palpitations, breathlessness, overwhelming fatigue, dizziness and lots of other associated symptoms. Bit like snowflakes - every one has a different pattern.
in reply to ninks01
Hi,
Pretty much what CDreamer has said. I'll try to explain ............... if I'm normal and I have a paroxysmal AF event in my chest I would feel any or all of those features CDreamer has described.
I am not normal so therefore I feel nothing ( the medical term is asymptomatic). So, I am quite unaware anything is wrong even though it is. Not good.
Actually, right in the beginning I thought I was going down with flu. It was only when my blood pressure dropped over a few hours from 136/80 to 76/50 that my GP put me into A & E where they clocked my heart rate at 156bpm, as well as being irregular. Dr. in A & E transferred me to Cardiac Unit where I stayed for another 5 days under care of Cardio Consultant when they identified my being asymptomatic as well as having paroxysmal AF.
Hope that helps you.
John
hello ninks and welcome to the forum. Just read your profile so know a bit about your AF history. It’s good that you have picked up on the alcohol and weight issues because these are some of the main contributors to having AF. It’s also good that you have seen a cardiologist and are now on a medical regime that seems to be keeping your heart rate below 100 bpm because that’s important as it reduces the risk of heart failure (which needn’t be as bad as it sounds). You also take an anticoagulant so at least all the risk areas are reasonably well covered.
As Bob says, check out the AF Association website because AF is a condition which varies enormously for different patients which makes it sometimes more difficult for us poor mortals to offer the best advice as treatment needs to be more specific to a patient’s needs.
Once you have got all the lifestyle issues under control, there is a very good chance that you will see reduction in the number and intensity of episodes. However, AF can also be a progressive condition so episodes may become longer and more frequent which is why it is referred to as a mongrel condition. There are treatment options and the best route for finding out what might be best for you is to see an Electrophysiologist who is a cardiologist who specialises in arrhythmias. Appointments may be hard to come by on the NHS so, if possible, consider a private consultation which could cost around £300 but do your homework first to make sure you ask the right questions and you will also get a lot of help from forum members. Hope this helps…….
ninks01 in reply to
Thanx for reply, have spent a lot of time reading up on AF over past 18 months but never seem to get very clear answers, suppose that's because of the nature of AF being quite varied. Will check out the AF association site. As i said the meds seem to take the edge of the episodes but i do get times when my heart rate drops to 49/50 and as i said it stresses me out a bit.
Hi, i hve just been diagnosed with paroxsmal AF. H.Rate shot up and remained there took 5 hours in A & E to get it back down. I wouldnt worry too much about your H.Rate dropping its the Bisoprolol, my own drops to 43 at times on this, my GP told me that as long as I can tolerate this without fainting or such, then best lower than higher, but all my life had slow H.Rate if around 55 - 60, so was warned to watch out for Bisoprolol taking it lower as it is intended to do so. I am also on Apixaban.
I had no idea i had heart issues, not fat, hardly drink, never smoke and walk daily, but it got me in the end. still i got to 75 before this happened so its age related anyway in most cases.
my advice is to skip the drugs and go straight to an ablation. The earlier you ablate, the better chance it’ll work. You can always try drugs if it doesn’t work, but much more difficult to try ablation after drugs fail. And they WILL fail.
Absolutely shocking advice. You haven’t even asked anything about duration, frequency, symptoms and your telling them to go for a permanent “solution” like an ablation straight away. How about asking some questions first? This person could be having minor and temporary episodes. They could take drugs and it calms the heart and they never have afib again or they could take drugs for a year or two to give them time to make the lifestyle changes that could invariably rid the afib that way.
How can you say the drugs will definitely fail? That’s total rubbish. People have been on the drugs their whole lives and been absolutely fine. If anything will invariably fail it will be the ablation. It works as much as it doesn’t but a large percentage of people have to continually go back for yet another ablation, each time increasing the risk that something will go wrong and invariably, eventually, this will stop working as well and you’ll be back on drugs and/or in permanent afib.
Ablations are incredibly risky. They don’t read off a huge list of risk factors to you multiple times in the build up to yours for no reason. But giving people advice like this is crazy. A failed ablation can absolute destroy a persons life and invariably permanently. Trust me I know. Not saying this always happens but it’s always a risk. I had my ablation relatively early, just under 2 years and it’s turned my life upside down.
First port of call should always be strict lifestyle changes and see what happens. Usually while taking drugs to keep you under control.
thanx for reply , and advice.
well said elli , youve just saved me typing all that out,can i ask how your ablation turned your life upside down, as i have been offered an ablation it would be interesting to know some of the drawbacks , thanking you in advance, hope you get better soon.
Firstly I’m not saying it never works. I’m just saying it shouldn’t be the instant go to option. It’s heart surgery in my view whatever way you look at it. There are probes going into your heart and it’s very easy to make a mistake no matter how “routine” an operation they choose to make it sound. I was told I’d be up and about and able to work out the following day. Really? Absolutely terrible advice. Here I am over a year later and still having issues and still off work.
It’s hard to explain how my heart feels but ultra sensitive to anything is probably the best way to describe it. I have real issues when I try to go from one speed to another quickly. My heart struggles with a quick change of pace/rate. It almost over compensates by beating really quickly and then struggling to get back down to normal. It rarely feels good. I always feel like I’ve got a lump in my chest and the area feels generally sensitive the large majority of the time. Any sort of bug I get that previously I would just shake off or work through, knocks me for six. My heart/body cannot cope with the extra work involved trying to fight off even the tiniest of infections, like a big standard low grade cold. I generally feel fatigued most of the time. I have the odd day where I feel ok but they’re few and far between. Exercise is a no no. I can go for decent length walks and do very light weights but that’s it. Anything too strenuous and my heart feels like it’s going to rip through my chest and I get dizzy and feel like I’m going to pass out. Eating can even be an issue. If I eat too much and I get even slightly bloated then I feel terrible all over but my chest feels the worst and I’m continually feeling like I’m going to go into af. The worst thing is trying to play with my kids. They’re only 8 and 6 and where I would previously Chuck them about and run round with them I’m unable to do this anymore. I can do it for 5 minutes at most but I’m well accustomed now to know when I need to sit down and let my heart calm down as I’ve nearly passed about our before. I’m only 36 by the way not 70. The only two positives are that I haven’t been in af since February and haven’t had any meds at all since then either. But the way my heart feels, practically permanently, I doubt even this will last. With the benefit of hindsight I wouldn’t have had the operation. My life was much better prior to it and at least I had some hope that things would improve. Now I feel like my heart has been permanently scarred and won’t ever return to normal. Maybe it will but it’s hard to see when my heart feels the way it does.
Maybe I had a crap surgeon and was very unlucky. Who knows. But I would never in a million years tell people to even think about taking the risk until they’d exhausted all other options. Be MEGA strict with the lifestyle changes for a year or 2 and I think that would make the difference in the vast majority of cases. Only have an ablation when it’s the last option. I know they say the earlier you have it the better and I understand that but I think the best route is to cut out literally everything in your life that could be causing an issue first and if that doesn’t work after a good year at least then maybe start thinking about it. It’s just not worth the risk in my opinion. A life without booze and junk food is really not a big price to pay. You seriously do not want the alternative trust me.
ahh ,ellie im really sorry to hear you are having such a terrible time, i understand your not telling people not to get it done but its good to know the negatives also when faced with af and all that surrounds it. I also regard it as heart surgery and refused an ablation last year , as you say no matter how routine it is ,a mistake can be made, i also think its a last resort operation, and im trying and willing to try the alternatives first. I do hope you get better and will pray you do, and soon, and thank you again for your honesty and valuable information .
No problem tomred and thanks for the well wishes.
I’ll always give my opinion. People need to see both sides of the coin and then it’s down to them to make the decision.
I just don’t think it should be seen as this miracle cure that’s going to resolve all issues. It really isn’t. Even when they work you still need to put some serious effort in to keep it that way.
Invariably they fail in the end and you do generally need to have others as a top up. Just not worth the risk in my opinion unless you have no other option.
Drugs are not exactly a good option for me either and that was the main reason I went for the ablation was to get off them. But if I could go back now I would continue as I was but be even stricter with the lifestyle choices and see what happened. That’s the best option I can see and it’s the advice I will continue to give whether some people want to hear it or not 😆
in reply to JJHRT
Back in 2010 at the beginning of my AF journey, ablation was mooted and I rejected it totally. I went the drugs route. Total success. Because many months into the journey I found food was my trigger. So food and meds fixed me. The other point is I was diagnosed and treatment started in 9 hours from onset ! I didn't want anyone barbequeing my heart. As a result I have a pretty good heart given age and condition.
ninks01 in reply to
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Rubbish, please do not tell people the drugs fail, they do NOT.
You have had some good advice. I would just add that use AF and all the associated homework to understand it as a driver to make better lifestyle choices so you not only reduce AF episodes but also other chronic issues that crop up in later life.
Do you have Vagally-Mediated AF?
interesting, never heard of this before and i do tend to have episodes after meal times, my wife has even mentioned this........thanx...
I am starting to see more of a pattern in the evening for my attacks I walked 4 miles yesterday and felt great sat watching tv Saturday and I could feel the palpitations
Mine are similar , between 4pm and 8pm..........we eat main meal of day between those times .........even some mornings after breakfast i get slight episodes. interesting... cheers.
I actually wake up fine at times then having my morning tea AF can start after just making the drink yet walk 4/5 miles and nothing . I have no pain but tne flutter so I don’t know if mine is food related like you say or more at rest times rather than when busy . I had a CT scan ,echo and not to bad just life’s abuse taking its toll a little but my heart monitor results are not back yet since September. Have you had them 3 things ?
yea...very similar......had echo....one and seven day ecg monitor and a mri scan. Echo and mri came back fine...no underlying issues....ecg...was also ok, sinus ok etc.......as i said never been ill until last two years........had a fair bit of stress in past jobs and a pretty wild social life.........last two years have made a lot of small life adjustments........one step at a time i suppose....stay safe.
My EP cardiologist, part of a team who teach at a leading medical school, told me that they are very much of the opinion that true vagal AF is highly unusual and would lead to a constellation of symptoms since the vagus nerve innervates a wide array of other organs; also, if it were being "irritated" the first effect would be of severe bradycardia, with swings of tachycardia. "Vagal AF" is different, being a theoretical idea that has been proposed for people whose AF seems related to when the adrenergic or cholinergic autonomic nervous system is more activated.
In my case, which sounds similar to yours, I was told that the cause could be physical and related to the heart being moved and stretched. I have read that this can bring on ectopic beats and these can trigger AF. The heart is not a free floating organ but is attached to various parts of the chest cavity; also other organs can naturally press against it. So, it can be affected when stretching, bending or lying down, or when the oesophagus moves and presses against the atrium during swallowing or acid indigestion, as well as when the the stomach or intestines push the diaphragm high against it when distended or moving through peristalsis.
This has always struck me as being a good explanation of paroxysmal AF
Steve
Works for me Steve. I've alway used this idea to try and explain why some people notice their AF more when laying on one side or another.
Hi ninks.
I was paroxysmal which has been explained brilliantly by other people. I was put on bisoprolol but I had huge issues with fatigue when on any of the drugs I was trialed with. This prompted me to try the ablation which has rid the afib for now but given me a whole host of other issues.
Please don’t listen to the advice given by jjhrt. Don’t jump into anything straight away. I’m not saying you shouldn’t ever have an ablation and it may be the option that works for you but your first port of call should be strict lifestyle change in my opinion. Look for anything that could be affecting you. Drink, drugs, poor food decisions, weight issues etc. Sort your health out first and it can and usually will sort the problem if you hit it hard early. You don’t want to be stuck on drugs or constantly in an operation theatre having risky heart surgery for no reason.
I now see af as a warning sign that your doing something that your body isn’t happy with and/or can’t cope with. Usually due to poor lifestyle choices. Some people can cope with these poor lifestyle choices and the unlucky ones who can’t end up here. Sort the lifestyle and you’ll invariably sort the issues.
Good luck 💪
I agree totally with Elli, after having had 3 ablations and now in constant AF. I wish someone had told me about lifestyle and diet changes first, would I have listened - probably not. I thought having an ablation would be the easy route - it wasn't.
Jean
Problem is that’s how it’s advertised. People want the easy fix but as with most things In life there isn’t one. Good thing about this site is you do (generally) get to hear things from both sides. Even if nobody is listening 😆
It is frustrating that some people would rather cling to alcohol or junk food etc rather than making the ruthless decisions early and possibly ridding their afib for good before it becomes a major issue and remodels their heart permanently. All we can do is try.
Yes, people want to get back to their extreme sports too. Totally unaware of things that their heart is not happy with. Ablations can help, but only after lifestyle changes have been tried. My first two ablations made my AF worse, the third helped.
I can sympathise as I’ve surfed for over 30 years and i don’t want to give up a life long pursuit because I have to take a blood thinner ! I mean alcohol fine No worries coffee no worries I’ll give all that up in fact have given it all up. I eat well and I enjoying running. So yes for me getting back to my sports and off life long medications is a huge motivation to get ablated. If I had the money I’d pay privately and go for anyone of the potential solutions mummy luvs mini maze might seem extremely to some but to me it speaks to me doing another ten years of surfing ! And at 46 that’s appealing I know surfers in their late 60s and I always hoped that would be me. So yeah i sympathise strongly with the runners and cyclists and surfers and rock climbers that get AF. They pursued a healthy life style and got reward with a heart condition and medication for life.
Sport is fine, extreme sports not so wise. I trained twice a week swimming. Went out cycling with a group, horse riding, long distance walking, cross country running. I was never still and enjoyed a full life. Always wondered why I was never first in anything (apart from swimming). Although my AF was diagnosed around 2005 at age 54, I feel I probably had it 20 years before then. I used to get spells of extreme tiredness, would sit for a while and it would pass.
I always pictured myself joining a local rambling group when I retired, but can't because if I had a bad AF attack it would spoil the walk for everyone.
Jean
I would say horse riding is extreme Jean ! They scare me … we’ll always good to hear your experiences as someone who’s lived well with AF so long. Massively appreciate the knowledge you being to the group. Can I ask were you horse riding on an anticoagulant ? Or warfarin ? Again all your activities give me some hope I can continue on even though I’m on blood thinners and in persistent AF. My EP told me my CHADvasc was low and I don’t need to be on them. Hard choice to make now I’m terrified of a major bleed or stroke.
The only things I did after being diagnosed with AF were, swim, cycle and walk. I didn't change my life because I was on an anticoagulant, didn't give it that much thought to be honest.
Jean
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I sympathise too as a 36 yr old man who’s been forced to give up kickboxing due to af and a botched ablation. Its far from easy. As you say booze, food, coffee absolute doddle to give up. But giving up something you have a real passion for is majorly depressing.
yeah that sucks. To give up something that’s healthy for mind and body and is a calling not just a sport is tough. And tbh even harder at 36. Botched ablation ? Didn’t work or made things worse ? What are your options going forward ? I think of was rich I’d be jumping on all sorts like mini maze etc sadly it’s going to be down to nhs which is a wreck currently. I had some tests and consultant appointment at a private hospital and my god how the other half live !
Yeah it causes utter carnage for the old neurones I’m not gonna lie. When you find something that makes you feel alive physically and mentally it’s a tough pill to swallow to have to stop prematurely. But one can either bitch about it or crack on. I choose crack on.
Worked in terms of ridding af, albeit probably temporarily and getting me off meds. Problem is I’ve swapped it for a whole other host of issues that equate to a much worse scenario.
Options at the moment are keeping myself sane 😆 that’s as far as I’ve gotten currently. But when I crawl out of this chasm I’ll let you know.
Yeah private is a different world. I very nearly did it 😅 so glad I didn’t or I’d feel even worse. Or maybe they would have done it properly. Who knows 🤷♂️
nightmare mate ! The NHS right now is not really functioning. I’ve spoken to a lot of people in the last month with AF in uk and they’re really not getting much help. Some can’t even get hold of anyone to speak too post surgery … literally given a diagnosis had quick chat given medication fair few months later given treatment with zero follow ups. It’s depressing. But yeah you’re not wrong got to crack on as it’s the only option. Hope you get out of that chasm asap. Good luck.
yeah nhs is dire at the minute. Wasn’t ever really that great to begin with in my opinion 😆 but now it’s as good as useless.
Thanks for the well wishes 👍
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I too knew nothing about AF when first diagnosed- was given pills and left to it! You're doing the right thing by asking. I'd advise investing in a good EP to move things further. Research those with a good track record and get a private appointment. Usually if they think a change of drug regime or ablation is a good way forward they can refer on for treatment on the NHS. Meanwhile keep up with the lifestyle changes. Regular brisk walks not only help with weight and BP, they also improve our mood; reducing or giving up alcohol makes a difference to many of us; looking into a healthier way of eating also helps. Have you found the York Cardiologist YouTube channel yet? That's helpful and he also does private consults. He's a Cardiologist not an EP but several people have reported helpful conversations from their consults.
Lifestyle changes can really help reduce the AF burden, as others have said. Look at list below and address in that order.
1. Stress - worry and anxiety is the most common exacerbator. Many activities such as Yoga, Tai Chi are great because they teach exercise, breath work and relaxation - all in one hit.
2. Sleep - many people do not get enough sleep - if you awake tired every the morning, if you are known to snore - ask for a sleep apnea test. Treatment for sleep apnea eliminated my nocturnal AF.
3. Exercise - needs the Goldilocks approach, neither too much nor too little, Twenty minute walk a day.
4. Eating - smaller meals, especially before bed, no eating for 3 hours prior to bed and watch for any particular food or drink that may give you indigestion. Often gastric and heart problems are linked so often your gut is more intelligent than your brain or taste buds and tries very hard to let you know!
5. Breathing - most people do not breath effectively - they breath through their mouth, too shallow and too rapid. Practice breath exercises daily - 2-5 minutes of good breath work really helps. Join a singing group - no matter you think you can’t sing - it teaches you breath work.
The ‘in’ term for all of the above is ‘body hacks’. Simply put it is about adopting practices that your body finds energising and life giving rather than energy sucking and stagnation. There is SO much you can do to help yourself.
Personally I struggled greatly with both drugs and ablation so anything you can do to help yourself helps.
Best wishes.
Hi, i believe i also have PAF, as i am extremely fit and healthy, 61 years old. Dr has not said anything about it except that what i had 2 months ago was definitely Afib. Was put on bisoprolol but 2 weeks on that put me in brachicardia with HR of 37!So not on that now and just trying to stay healthy as possible.
Personally i think my PAF was caused by extreme stress from my job and managing stress better is now a big part of my life.
I also think it was brought on by too much exercise as i was over doing that also. Now i stick to healthy diet and walks!
Hope this helps.
Good luck
If only we had known these things before we developed AF……might we have done things differently? Hindsight is a lens we were unfortunately not blessed with.
Indeed, if only....!
The reason I ask if you have vagal Afib is that I declined to take drugs as a preventative measure to my Afib as I know it is Vagal Afib as the drugs made me feel terrible.
I had an appointment with my cardiologist yesterday and he is amazed at my progress drug free. I now think I am in control of my Afib even though I get it almost every day, but the burden is very low.
Are you able to stop your afib as soon as it starts with a Valsalva manouver?
This advice may help:
Having had AF for 17 years, three ablations and numerous cardioversions my advice to people who have just been diagnosed with AF is the following:
1. 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 when sat, or unwittingly do shallow breathing. If you do your heart will protest. People say I wasn't doing anything to cause AF, just sat at my PC, or watching t.v. Think about whether you're sat in a position that could be causing internal pressure on your heart or if your breathing has become too shallow. In fact, as soon as you become aware of your heart rhythm kicking off, then practice deep breathing right away, this may quickly revert you back into normal sinus rhythm
5. Try supplementing with magnesium (I use glycinate from YourSupplements online, it was recommended to me by another forum member here). 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.
Jean
some good advice........think i slouch for sure and my breathing is probably crap.......as for checking....i try not too if i feel "ok"...but it is a strong urge . Small changes seems to be the way.👍
Longstanding Paroxysmal af: What next for me?
I'm only 39 and have just been diagnosed with AF.
Does anyone else have this kind of afib?
