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Permanent Afib

Vicmeister profile image
142 Replies

Hello Everyone. Is anyone on here in Permanent Afib? Has it changed your quality of life in anyway? Such as are you still able to go for a walk, go shopping, gardening, mow the lawn, vacuuming, etc.? Do you have symptoms as you would, having paroxysmal Afib? Do you know if having permanent Afib there will be damage to your heart? With having permanent Afib I guess you need to keep an eye on your heart rate more than normal? Sorry for all the questions. Thank you.

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Vicmeister profile image
Vicmeister
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142 Replies
jeanjeannie50 profile image
jeanjeannie50

Yes, I'm in permanent AF and have been for 4 years now.

I used to have awful long attacks of PAF and would often be admitted to a hospital ward. I'd had three ablations and after a time the last one really helped. Because I'd also had lots of cardioversions, there came a time as I said 4 years ago when it was decided not to offer me any more. My heart rate settled to going between 60-90bpm and I've been fine since. Once again I can now do all the chores you have listed. I particularly noted how easy it was to mow my back lawn in one go, instead of about 5 sessions.

I have to make sure I don't unwittingly eat or drink anything that contains artificial sweeteners or my heart will take off at a gallop. Also any vaccinations can trigger a faster heart rate. So I won't be having any more of any kind.

I take 25mg of Metoprolol twice daily and 4mg of Warfarin each morning. I used to take Flecainide too, but stopping that almost a year ago has increased my energy levels. It was discovered to be causing more problems than helping.

Jean

Vicmeister profile image
Vicmeister in reply to jeanjeannie50

Hi Jeanjeannie50

Thank you for replying. It's good to hear that you are able to do chores again being in Permanent Afib. I have a feeling that I am headed that way. My Afib is increasing more often. I have a referral to arrhythmia clinic and I wanted to make sure I arm myself with questions. On the referral the cardiologist put down pacemaker vs ablation. But I'm not 100% convinced that a pacemaker is the way to go. I believe that the cardiologist is reacting to the heart monitor reading when I self converted to NSR while sleeping that there was a "conversion pause". I actually had that pause today when converting and I thought I might pass out. It was horrible. I know I'm throwing out a lot of symptoms, but I just want to make the right decision. Maybe the ablation will stop my frequent attacks. I don't know. Maybe more tests are warranted. Like you I take metoprolol, but only when having an Afib event or if I notice my heart rate increasing for no good reason. Otherwise my heart rate is good. I will keep everyone up to date. Thanks again.

pilgarlick profile image
pilgarlick in reply to Vicmeister

I can report something similar. I had paroxysmal AF for almost twenty years before going into permanent AF about two years ago. (I'm 81 now). I can still do all I did before, although sometimes more slowly, especially walking up the hills. But cycling and golfing is no problem, and, in many ways, I'm happier as I no longer need to wonder when I'm next going to go into an AF episode. On balance I think I can say that I prefer the present situation, especially as it seems less important to be in permanent AF than to give the heart the shock of going from sinus rhythm to AF and back again.

Jackiesmith7777 profile image
Jackiesmith7777 in reply to jeanjeannie50

Yes we were wondering if he had the flu jab if that would make his already high heart rate worse

jeanjeannie50 profile image
jeanjeannie50 in reply to Jackiesmith7777

For some it does, others have no reaction whatsoever.

Rainy111 profile image
Rainy111 in reply to jeanjeannie50

Ihi I noticed you said about artificial sweeteners .I have took them in tea for many years. I was diagnosed with af this year

jeanjeannie50 profile image
jeanjeannie50 in reply to Rainy111

For me artificial sweeteners are a sure trigger and I now avoid any food or drinks containing artificial additives of any type. Put sugar in your tea instead, but try to reduce the amount. I just have a level teaspoon in mine now.

Jean

Rainy111 profile image
Rainy111 in reply to jeanjeannie50

Thank you I will try that

Bunkular profile image
Bunkular in reply to Rainy111

Different 'food' additives affect people in different ways. For me it's monosodium glutamate (MSG) which many soups & prepackaged foods contain that spikes my palpitations a lot.

Vicmeister profile image
Vicmeister in reply to Bunkular

Me too. MSG is awful. Sometimes it takes absolutely nothing for the dreaded AF to show up. I could just be walking down the hallway, sipping a glass of water and boom. For me I find it a futile exercise and exhausting to try and figure it out. But I must say things like the MSG, or additives like Jeannie mentions or caffeine, etc are obvious things to avoid. Cheers.

Jimmy1944 profile image
Jimmy1944 in reply to jeanjeannie50

Hi. Yes I was, after yrs of paroxsymal A/F and was unable to cycle (my hobby) and be active. I had an Ablation procedure in 2016 and have been pretty symptom free since. I do take Bisoprolol Simvastatins and Warfarin but are generally able to be as active as I like for my age, 79. Jimmy

jeanjeannie50 profile image
jeanjeannie50 in reply to Jimmy1944

You lucky, lucky person. I had 3 ablations and am a lot better now. Used to cycle miles on my bike, do long walks and also swim. How I miss doing those things. What EP did your ablation?Jean

Jimmy1944 profile image
Jimmy1944 in reply to jeanjeannie50

EP?

jeanjeannie50 profile image
jeanjeannie50 in reply to Jimmy1944

Electrophysiologist - a consultant who performs ablations.

Jimmy1944 profile image
Jimmy1944 in reply to jeanjeannie50

Mr PJ Stafford. Glenfield Liecester

Florence-Nightingale profile image
Florence-Nightingale in reply to jeanjeannie50

Hi Jean I too am in Permanent AF for the past six years and can do most things except walk up hill. I too avoid artificial sweeteners and also Caffeine. I do get quite tired though.

jeanjeannie50 profile image
jeanjeannie50 in reply to Florence-Nightingale

I suspect I may have grown lazy. I walk down very steep hills to my little town and catch the bus back. Yes, at one time I'd walk back up, but I think why do that when you can catch the bus and have a free lift.

Jean

FSsimmer profile image
FSsimmer

Well, I have been diagnosed with long standing persistent Afib.

I had an ablation in May which put me back in NSR for 1 week. Otherwise I have been in Afib non stop for just over 2 years. I am listed for an cardioversion now and of course on the usual medication. Long term we have the possibility of heart damage and stroke, but it needs careful management.

Its managed in two ways, either rhythm control or rate control.

Well they cant get me back in NSR as of yet so I am paranoid about my heartrate...The target rate is an average of 100bpm. So ensure you have a halter test to check this,. Mine came in on average at 90 bpm and they increased my medication, although the cardiac nurse said she was not worried about the rate. When I take my resting pulse its about 80 bpm, but a halter is of course more accurate. I am due a review soon and will mention my worry about HR.

I have heard that it can often take some time to get the rate right. That said some patients get a bradycardia ( low rate ). I only go on about rate as I am not sure they will get me back in NSR. Afib is progressive, and the longer you are in it, the more chance you have of staying in it. For the most part I have no symptoms and it does not interfere with my activities, but people vary widely.

Prior to diagnosis I was a keen runner, but now do brisk walks so excercise helps 4-5 times a week. My echo showed some ejection fraction reduction, but this is not unsurprising as I was in Afib with a rapid heartrate at the time, and it would cause that. However again, being anxious this has contributed to my pulse rate paranoia so anxiety does not help this condition!!....I have almost eliminated caffiene, never smoked, and hardly ever drink ( perhaps one glass of wine a week, my simple pleasure ). I still do all I want...I COULD run, but wont, and travel, go abroad etc, so basicaly live with it....And here is wishing you all the very best!

Vicmeister profile image
Vicmeister in reply to FSsimmer

Oh FSsimmer, to have an ablation and only last one week. Wow. That is my dilemma. To have an ablation or pace maker. I am having more frequent Afib events and just today thought I would pass out when I went back into NSR. "Conversion Pause" it's called but so frightening. This is what my cardiologist saw on the heart monitor. I was having an Afib attack and self converted while in my sleep. And there was this pause. He is reacting to the pause. Stating that my HR was low and recommended a pace maker. I want to make the right decision. So I have a lot of questions. If I did go into permanent Afib, which is likely because my events are getting more frequent, it's good to hear that daily activities can still be good. I am very active but not like you....running, etc. I will keep updating my progress and what is recommended and my decision. Be well.

FSsimmer profile image
FSsimmer in reply to Vicmeister

What you are talking about after the ablation is the 'Blanking Period' over some 3 months. You can convert out of Afib often in that time period. If you have a bradycardia then your rate may be too low and they may suggest a pace maker which will make you feel better. Just a point. In cases of tachycardia when it cannot be controlled by medication ( your rate is too high ) a last ditch procedure is a SA node ablation. This destroys in effect the heart firing mechanism and they will then implant a pacemaker to regulate your heartrate. Its a last option procedure but will not convert you out of Afib but will control the tachycardia

Vicmeister profile image
Vicmeister in reply to FSsimmer

Hi FSsimmer

I think you might have misunderstood my statement when I said "to have an ablation and only last one week". I was referring to your experience. When you wrote back and said "What you are talking about after the ablation is the 'Blanking Period' over some 3 months. You can convert out of Afib often in that time period". I was a little confused because I know that an ablation has a healing period and for some that period can last up to months even up to a year. I think it was a miscommunication. Sorry if I didn't word it property. Thank you for all the good information. I sure do hope I never need an SA node ablation. Like you said that is the very last procedure. Thank you. Be well.

FSsimmer profile image
FSsimmer in reply to Vicmeister

Hi, not an issue, sorry.

I was informed it can take some 3 month to settle after an ablation. You may go back into Afib, but then into NSR. so doctors wait that time at least to make a further assessment to see if it worked. I went back into Afib after a week, but they still waited 3 months before deciding on the next course of action in case I returned to NSR again. Whatever, thanks and all the best!

Jackiesmith7777 profile image
Jackiesmith7777 in reply to FSsimmer

My husbands case sounds exactly the same as yours but sadly he had a stroke because of it four months ago . His eco said he had 33% ejection fraction but said but as his heart rate has come down to around the 100, mark it should slowly improve as he was asymptomatic with a rate of 165 plus when he had his stroke and we don’t know how long it had been going at that rate . He had an ablation in 2017 but it had obviously stopped working somewhere along the line and he wasn’t out on blood thinners afterwards hence the stroke , then he was in AF on and off and we had to catch it to show the doc but now it’s all the time . He is on bisoprolol which has helped bit blood pressure is quite low 115 over 66 . We’re hoping to get things sorted more when we see the arrhythmia clinic consultant on the 9th . Take care

FSsimmer profile image
FSsimmer in reply to Jackiesmith7777

Hi Jackiesmith....Firstly my best regards to you and your husband. Hope he is improving. I was going to say did he know he had Afib ? as many people do not and end up with a stroke as the first indication. My EF was 45-50, but again if you are in rapid AF it will cause this. If his rate is controlled it should improve. Just a point. As soon as I was diagnosed after going to A&E feeling distincly 'strange' my HR was 148 and I was started straight away on blood thinners and beta blockers. I also had a CHAD score done by my cardiologist...Again when you see your consultant ask if this has been done, as it signifies your risk of adverse events. I am on bisoprolol and Felicanide but have no issues. How old is he ?, I am almost 69...Whatever, all the very best to you both!

Jackiesmith7777 profile image
Jackiesmith7777 in reply to FSsimmer

We thought it was his asthma as he was sitting up at night as breathing was laboured . I listened to his chest thinking it was that and I could hear his heart beating so fast . Took him to A and E heart rate was 164 they put him on chad score of zero . I thought that was good but found out afterwards I don’t understand why as he had an ablation in 2017 because of AF , they just gave him rampiril thst he had been on before his ablation no thinners . We went to GP next day as I still wasn’t happy but Jist have a prescription for more ramprimil, I felt like nobody was listening to me . He had his stroke the next night . I nudged him in bed to see if he was ok as I was still worried and he made a grunting noise and not able to talk I called an ambulance and he was scanned and discovered he had a massive stroke , two clots , language vision and speech part of brain , he s hving speech therapy , lost 50% vision right side both eyes . So he not k ky hs stroke to contend with but sorting his heart also . He has been a bit down this week as he s found out from optometrist thst he won’t be able to drive again and hs to register as visually impaired .

FSsimmer profile image
FSsimmer in reply to Jackiesmith7777

So sorry they did not sort him out on thinners. With a score of 0 I think they thought he did not need them. MY score was 2...Hope all goes well!!

Jackiesmith7777 profile image
Jackiesmith7777 in reply to FSsimmer

Yes this is why I don’t understand the zero if he had a fast heart rate, and earlier ablation in 2017 thought he would be higher than a zero risk .

Jackiesmith7777 profile image
Jackiesmith7777 in reply to Jackiesmith7777

Yes exactly

BaileyC57 profile image
BaileyC57 in reply to FSsimmer

I am tired all the time with AFIB having it all the time! Are you tired at all?

Gumbie_Cat profile image
Gumbie_Cat

I have been in AFib for just over a year now, with a respite of less than two days following an ablation. (Though I felt too groggy to appreciate it.) I’ve been told that the amount of fibrosis in the atria means that other procedures aren’t advised.

Im getting along ok to be honest. On Bisoprolol, which I have just been told that I can reduce a little, plus apixaban. I no longer have those bouncing high heart rates when I went into A Fib, or the dips when I reverted to NSR. No palpitations to speak of - although I can feel my heart bumping if I lie on my left side.

Had a trip to Venice recently and was walking about 14,000 steps a day, up and down bridges etc. My legs do feel tired on stairs and hills, and sometimes I notice my heart rate going a bit too high then and cut back. Same when I tried to run for a bus - caught the bus but my HR was higher than I would like.

Sometimes my walking rate stays under 100, but it also gets a bit bouncy sometimes. A painful back holds me back a bit more than the AFib really. So I use the lighter vacuum cleaner and leave dealing with Henry to my husband mainly - doesn’t seem to bother my heart really. He’s the gardener too, but I think mowing the lawn depends on the type of mower? We have an old-fashioned push one so it’s not powered and might prove a bit of a challenge.

However, everyday activities are fine - just the blinking hills and stairs can annoy me. I just push on and decide there are many worse off.

Vicmeister profile image
Vicmeister in reply to Gumbie_Cat

Hi Gumbo_Cat and thanks for replying

Good to hear that your daily activities are still pretty good even though you are in constant Afib. And really good to hear that you really don't notice the wiggly heart. I guess it is only natural that one has to check their heart rate when doing activities especially like you said, climbing hills and stairs. Those things I notice are a little more challenging too. I do have a big decision to make whenever I get an appointment to the arrhythmia clinic. Having an ablation is scary because there are so many variables as to how one's heart will respond. It may not work like your experience or it could have great outcomes like so many have had. I'm just so tired of the frequent Afib attacks and it's getting scary with the "conversion pauses" when going back to NSR. Good wishes to you. I will keep you updated.

Gumbie_Cat profile image
Gumbie_Cat in reply to Vicmeister

If I had my time again, I would still have the ablation. I would have had more if recommended. I had sedation and it really was ok. Lots of good information on recovery on the AF association website. Good luck, it really does work for many people.

Vicmeister profile image
Vicmeister in reply to Gumbie_Cat

Thanks for the good wishes. Lots to think about. I will keep updating.

FSsimmer profile image
FSsimmer in reply to Vicmeister

So would I , would still have the ablation. I had no issues whatsoever after mine and was in holiday in Greece 1 month after ( Doc said I was fine to go!! )

Rainfern profile image
Rainfern in reply to Gumbie_Cat

It’s so brilliant you made it to Venice Gumbie! I’ve no idea where my Afib journey will take me but posts like yours always feed my hope. I can start planning whatever the outcome of recent ablation. Thank you.

Gumbie_Cat profile image
Gumbie_Cat in reply to Rainfern

I almost thought we weren’t going to get there - not the AFib but a veterinary emergency as our cat had a tail abscess. However, the adult children rallied around and insisted. Luckily the cat got a clean bill of health on the day we travelled. Planning to visit my daughter in Canada next Autumn.

Crossing fingers for your ablation holding!

FSsimmer profile image
FSsimmer in reply to Gumbie_Cat

Just to cheer you up again I am off to Budapest for 6 days next week and I know I will; be doing a fair bit of walking !!

Jackiesmith7777 profile image
Jackiesmith7777 in reply to FSsimmer

That’s so good it gives me hope for my husband 👍🥳

Vicmeister profile image
Vicmeister in reply to Gumbie_Cat

I agree with Rainfern...that posts like yours are inspiring. They are very positive and hopeful. Where in Canada does your daughter live. I live in Cambridge, Ontario. Just about an hours drive from Toronto, Ontario.

Gumbie_Cat profile image
Gumbie_Cat in reply to Vicmeister

She lives in Toronto, though her boyfriend is in Banff so she moves between the two. We hope to visit both next year. Have been to Toronto twice, but last time was 2016. I have relatives over there too, in Orangeville and Oakville.

It is good to hear from people in permanent AFib. I think that there are a lot of people in that boat, and possibly once the rate is really settled they stop using the forums much.

Vicmeister profile image
Vicmeister in reply to Gumbie_Cat

I was born and raised in Toronto. I know Banff well. I lived in Calgary, Alberta for 17years and visited Banff often. It is beautiful there. Love the mountains. Should have stayed there but family called me back....lol

It's nice to still hear how people's journey's are progressing even if they don't need any further advice.

mav7 profile image
mav7

As someone in permanent afib, can't add to the above. Symptoms, activities, etc may vary.

If you have permanent afib, it is best to work with your doctor on proper medication to control your heart rate, anticoagulation, and regular echo exams to determine the effect on your heart.

Vicmeister profile image
Vicmeister in reply to mav7

Thanks mav7. Yes, working with your doctor is definitely something you need to do when in permanent Afib. It is good to hear that it seems being in permanent Afib is not the horrible thing I thought it might be. I just know that having these more frequent Afib attacks is making me go mad. And self converting is scary. The pauses and near fainting is getting more frequent. That is why I thought maybe I might be heading towards permanent afib. thanks again for your response. Stay well.

Threecats profile image
Threecats

Hi Vicmeister

I can’t add much to the excellent replies you’ve already received, only to say that I find being in persistent AF so much easier to deal with.

When I was paroxysmal, being an anxious type anyway, I found the random nature of episodes and the very high heart rates that accompanied them difficult to cope with. I went into persistent AF at the beginning of February this year and all that “will it, won’t it” anxiety went away. I was originally on a beta-blocker for rate control but since switching to a CCB four months ago I have gradually recovered my energy and now can do housework, gardening, diy projects, shopping etc plus look after my wonderful mum without any problems.

I know I’m lucky in that my AF doesn’t bother me much at all and I know others have different experiences but for me, being in persistent AF is a walk in the park compared to dealing with paroxysmal AF!

Good luck to you in whatever you decide to do, TC

Florence-Nightingale profile image
Florence-Nightingale in reply to Threecats

Hi Vicmeister I totally agree permanently AF much better than paroxysmal which was for me awful caused me so much anxiety over three years I had it.

Vicmeister profile image
Vicmeister in reply to Florence-Nightingale

Good morning. So glad you feel better in permanent AF. I know very well the anxiety that paroxysmal causes. It drives me insane. The anxiety.....hard for family to understand. Thanks for responding. Stay healthy.

Jackiesmith7777 profile image
Jackiesmith7777

Yes my husband is in permanent/persistent AF I think the meds make him tired . We have an arrhythmia clinic appointment for 9/11 to discuss his options after suffering a stroke and reduced heart function four months ago. They might offer an ablation or cardio version we ll have to wait and see.

Regards

Jackie

bassets profile image
bassets in reply to Jackiesmith7777

Best wishes and good luck for you and your husband.

Jackiesmith7777 profile image
Jackiesmith7777

Thank you , yes it’s all been very stressful he s only recently turned 65 and was still working . It’s effected his vision speech and language and was upset last week as he was told he would need a certificate of visual impairment as he has lost fifty percent vision in the right side of both eyes and was also told he won’t be able to drive again . So it’s a double whammy of the effects of the stroke and heart problems too . Take care , keep us posted x

Spiritji profile image
Spiritji

I have been in what they call permanent afib for 20 years........I take diltiazen 120 mg once a day in the mornings and Pradaxa 150 mg twice a day..........I can do all the chores you mentioned...........start sleeping on the right side at night to make sure the heart is calm......later can switch to left side......doctors don't seem to know of this trick. Some wines can activate it so careful in that area.......I can drink Prosecco with some ice in it seems ok.......

Also good to take Hawthorne and I also take coenzyme Q10 along with L carnitine and D ribose. My friends boyfriend worked in a research lab and they tested these three out for heart and the results were so impressive that everyone in the study started taking it. Then once I was at John Hopkins with my father years ago and they said the same thing.......to take these 3 together.......I was disappointed my cardiologist did not seem to know the benefits of this combo but I take it close to daily.

riverside22 profile image
riverside22 in reply to Spiritji

I've been in permannent afib for over 2 years now. I walk less, but that's mostly due to back and hip pain, I get tired, but always have. Going up hills I have to slow down, but just rest a bit then go a bit further. 2 bisodol, the usual blood thinner and carry on really.

Rainfern profile image
Rainfern in reply to Spiritji

Hello Spiritji - I have a big bottle of hawthorn pills that I bought when diagnosed with Afib last year. I then learned that hawthorn is a natural blood thinner, so as I was prescribed anticoagulant Edoxaban then Apixaban I was advised not a good idea to take hawthorn (either on this forum or the pharmacist?). Please could you point to any published research in this area and let me know of any potential issues? I would certainly never stop taking an anticoagulant. But ever since open heart surgery age 15 for hole in the heart I’ve chewed on hawthorn berries when they’re in season. The magic of an ancient hawthorn tree growing wild on the moors did seem to feed confidence in my heart at that age.

Spiritji profile image
Spiritji in reply to Rainfern

Seems like you know intuitively ........especially being able to chew on them in season........I take it off and on and take Pradaxa seems ok

Jackiesmith7777 profile image
Jackiesmith7777 in reply to Spiritji

Thank you that’s really helpful x

Spiritji profile image
Spiritji in reply to Jackiesmith7777

I was really impressed from my friend's friend who participated in the study especially that everyone in the study started taking the 3 as the results were so impressive to them

Jackiesmith7777 profile image
Jackiesmith7777 in reply to Spiritji

Thank you so much x

Vicmeister profile image
Vicmeister in reply to Spiritji

Hi Spiritji. The combo sounds very intriguing. Have you found it has benefitted you? How long have you been taking it?

Spiritji profile image
Spiritji in reply to Vicmeister

maybe 10 years of so and I do feel it is helpful

Vicmeister profile image
Vicmeister in reply to Spiritji

Thank you.

marinoperna profile image
marinoperna in reply to Spiritji

Have to ask. in what proportions (amounts) do you take your coenzyme Q10 along with L carnitine and D ribose? Would like to try this for myself

Thank you

Marino

Vicmeister profile image
Vicmeister in reply to marinoperna

Yes I would like to know too.

Spiritji profile image
Spiritji in reply to marinoperna

I just take the dose as recommended on the bottle ......try to take good quality...........the D-Ribose is a powder so just take a spoon of it.

marinoperna profile image
marinoperna in reply to Spiritji

Should have asked with the first question, what are the brands you wound up using? So much garbage and misinformation.

Thank you

Enable profile image
Enable

I'm 62 now and have been in permanent afib since 2018. It got some getting used to at first but now I sometimes forget I have it. I live a normal life , I fly long haul frequently and do a lot of walking. I can't do more vigorous exercise any more like running because it makes me breathless but brisk walking and I'm fine. My resting heart rate is around 85 and I take 2.5mg Bisopolol once a day. I'm a male by the way.

Vicmeister profile image
Vicmeister in reply to Enable

So encouraging Enable, to see that being in permanent Afib lets you have a fairly normal life. Good to hear. Be well.

oscarfox49 profile image
oscarfox49

I've had permanent AF for three years and possibly before that but it was not diagnosed. My heart rate is reasonably well controlled with a betablocker, Sotalol. Now getting on in life, I still try to work very hard and get regular light exercise walking and gardening, but I am finding my 'projects' very hard now and I get extremely tired just walking for 30 minutes or working for an hour or so (mostly light work or DIY projects). I don't worry about the effect it might be having on my heart, although I read that in most cases it will progress to some sort of heart failure (although of course once in the 70s or 80s we can all die of other things!)

In terms of the actual AF I don't experience many symptoms apart from early morning and when out shopping or in a busy situation where I worry.

In the end, permanent AF is just another label and our hearts do find ways of compensating and enabling us to carry on. We should always marvel at just how resilient and adaptable our physical bodies are! But don't worry. I monitor my condition every morning with a pulse rate/O2 device and also take my BP with a conventional monitor, but only on rare occasions do I have a very high pulse rate though the heart record always shows AF.

I am sure you will adapt to your condition. Good luck.

Vicmeister profile image
Vicmeister in reply to oscarfox49

Thank you oscarfox49 for replying. I think the overall consensus from everything I've read from everyone is that being in Permanent Afib is not a death sentence. Like any condition it's a matter of slowing down and listening to your body as to what you can and can't do and of course taking the appropriate medication. But it sounds like your body will adapt to being in permanent Afib with restrictions. Wish you well.

Ppiman profile image
Ppiman

My oldest friend is twenty years my senior, reaching a venerable 90 this August, and he has permanent AF, but at a fairly low heart rate. He's lucky as it causes him very few symptoms and affects his life hardly at all, although he has collapsed 2 or 3 times over the years, indeed, that was how he first diagnosed. These episodes were put down to low blood pressure combined with low blood sugar. He has developed a slightly leaky heart valve recently with some oedema in his feet, but all of little consequence to his overall health.

Steve

Vicmeister profile image
Vicmeister in reply to Ppiman

Hi Ppiman

Your friend is very fortunate to be able to live with permanent afib and not be hardly affected. Wish it could be like that for everyone...lol. All the best to him. Thanks for the positive story.

Ppiman profile image
Ppiman in reply to Vicmeister

Yes, he is lucky. I gather that estimates are that 40+% of people have no obvious symptoms, too, which is perhaps why the tragedy of a stroke can be the first time someone knows they have AF. I couldn't cope with mine when it causes my heart to race, but it's often been at a lower rate in the past and that was not so bad.

Steve

Vicmeister profile image
Vicmeister in reply to Ppiman

You are right that there are many people that don't realize they have AF and unfortunately for some they have a stroke. Like you I can't cope with the fast heart rate. I have decisions to make after seeing the arrhythmia clinic. I will keep posting. Keep well.

jayjay10000 profile image
jayjay10000 in reply to Vicmeister

Hi there. It's the same for me, since having my echo in March and my CT scan done in May June and October. Iam still scared of getting fast heart rate. The Last time I experienced that my heart rate got high as 220bpm.I now have been diagnosed with chronic anxiety, iam not coping very well, I don't like going anywhere on my own anymore incase of having another episode of fast heart rate. Iam not see my cardiologist consultant for the first time not until March 2024. I wish it was sooner because I just been told that my Aortic root dilation has grown by 0.3cm in only 7months. It is now 4.3cm. I worry everyday and I can not sleep on a night. Try not too worry easy said and done.Take care.

Vicmeister profile image
Vicmeister in reply to jayjay10000

I am also a very anxious person. Like you said, telling someone to not worry, is easier said than done. I don't know how many times I've been told that. And I know for a fact that when a doctor knows you are anxious or have anxiety that is the first place they go. That is now the answer to everything. When I first was diagnosed with fast AF, the cardiologist told me that it was from my anxiety. Really!!! I've tried everything to calm myself from deep breathing, yoga, etc. But when a situation comes up that stresses me out all of that goes out the window. Try and see if you can get a cardiologist appt sooner. Maybe calling and bugging the heck out of them....lol. While you are waiting to see a cardiologist and you have another fast heart rate of 220, please go to the ER immediately and they will hook you up to an ECG and you will know right then what is going on with your heart. Keep in touch with your journey. Stay well and don't worry.....ooops!!

01maxdog profile image
01maxdog in reply to Vicmeister

Wow! I’m in that 40% plus , I didn’t know I had a fib until I had a stroke - interesting

Vicmeister profile image
Vicmeister in reply to 01maxdog

Sorry to hear you had a stroke. It's unbelievable actually thinking that a good portion of the population are walking around with Afib and they have no clue. They are advertising those Kardia devices more often lately, wonder why 😏

BeeBee79 profile image
BeeBee79

Strangely, when I was in permanent AF it was easier to deal with than paroxysmal AF. I think bc when it’s permanent, you don’t experience the nice parts of not being in AF so the symptoms are more apparent.

I was 42 when I was diagnosed and have had 4 ablations and 1 cardioversion in past 2 years. to try and get rid of it so I’m thinking it’s not something you have to live with .

I used to run 5 times a week but found I couldn’t and put it down to turning 40 and getting older. I still can’t run but I walk daily and try to not let it rule my life although there are days when I simply have to take it easy…..

Vicmeister profile image
Vicmeister in reply to BeeBee79

thank you BeeBee79 for responding. Having paroxysmal Afib is absolutely horrid. Mine is progressing and harder to deal with. I will be seeing the arrhythmia clinic soon for options. I see that you've been through the wringer with ablations, etc. With Afib no matter what type, quality of life is affected to some degree. That's just a fact. Everyone has to know what their body can tolerate. Be well.

BeeBee79 profile image
BeeBee79 in reply to Vicmeister

Keep us posted on your journey and I hope you get some positive results 🥰

Vicmeister profile image
Vicmeister in reply to BeeBee79

I definitely will. Thank you

Gumbie_Cat profile image
Gumbie_Cat in reply to BeeBee79

It is a ‘mongrel condition’ as they say. I was really determined to get the ablation, and would have had more. It didn’t work out for me though, and for some people it is something we have to live with. In my case there is a strong family incidence, and there is too much fibrosis for them to recommend further ablations.

It’s a case of ‘this is where I am now’, then managing that as best as possible.

BeeBee79 profile image
BeeBee79 in reply to Gumbie_Cat

I like that phrase 😆

Swimsyroke profile image
Swimsyroke

I have been in persistent afib now for 2 years and can do most things though need to pace myself as I am 77.

I am much happier now and don't get anxious any more about whether some food, activity or even sneezing will trigger afib and mostly ignore my heart unless I really overdo things.

Vicmeister profile image
Vicmeister in reply to Swimsyroke

Thank you for responding. So good to hear you are doing well and you have no worries about triggering an Afib attack. That's a big deal for your mental health. Good for you. Afib is such a mongrel condition, I wish I would just go into Permanent Afib and be done with worrying when my next attack will happen. I'm so fed up with it really. Be well.

Murdy1 profile image
Murdy1 in reply to Vicmeister

We're all wishing you well here Vicmeister. Keep us posted please, sending 🙏🙏 Tom

Firstbusman profile image
Firstbusman

I have been in Permanent AF for around two years and have felt better for it. I’m only on 1.25mg of Bisoprolol and the usual dose of Rivaroxiban 20mg. When I had attacks of AF it was debilitating and stopped me doing anything thing for a while. Now I walking over 7500 steps a day dog walking and keeping a large garden looking nice. I’ve had heart scans to see if all is ok and have been advised that my heart is doing fine with no damage. My heart rate stays between 75 and 90 when doing normal things resting average is around 70-80 and walking or gardening around 100. My brother has similar. I’m not going to put my body through the strains of treatments only to get a few months of sinus. My brother did that and it lasted four weeks. So if your quality of life is not affected by it then carry on. Best wishes

Vicmeister profile image
Vicmeister in reply to Firstbusman

Hello Firstbusman. Can I ask how long you had Paroxysmal Afib before finally going to Permanent Afib? Do you know if everyone just goes to Permanent Afib? My attacks are getting worse and it's driving me mad. I am starting to get anxious wondering when an attack will happen and how bad it will be. thanks

Thomas45 profile image
Thomas45 in reply to Vicmeister

For me 22 years of paroxysmal, of which the first 9 were not treated by my GP, about 7 of permanent. There was no defining moment when I went from Paroxysmal to permanent. It was at some time between annual consultant appointments. Flecainide reduced my episodes of paroxysmal AF to one or two 20 minutes episodes per year, for 11-12 years.

Vicmeister profile image
Vicmeister in reply to Thomas45

Thank you Thomas45. Can I ask how you feel being in permanent AF? And do you still take Flecainide?

Thomas45 profile image
Thomas45 in reply to Vicmeister

The only medication I take because of AF is an anticoagulant, warfarin being my choice. I normally feel fine, as the permanent AF is asymptomatic. I feel rough today as I'm asthmatic and have an exacerbation due to a viral infection. Just been to the doctors, taken the first anti-biotic tablet and 40mg of prednisolone. From past experience I shall go to bed and sleep and in 6 hours I should be breathing better.

Firstbusman profile image
Firstbusman in reply to Vicmeister

Hi Good Morning

I was having attacks over a period of about 3 years. I never found out what triggered the attacks even though I tried hard to look for one. They got more regular until one evening I started an AF attack and in the morning I was still in AF. Going into an attack my heart rate went up to around 160 and it caused me to stop doing what ever at the time and the attention was on the AF. It caused hospital visits and GP appointments etc. However now I’m in Permanent AF things have settled down and I’m back to a near normal life. Just the medication to remember to take. The Rivaroxiban to be taken with food is a problem sometimes if eating out and I forget to take them with me. Causes me to eat more as I have to have something extra to eat to take tablet with when I get home. Still best wishes hope you are able to get on with your life and live with AF.

Vicmeister profile image
Vicmeister in reply to Firstbusman

Good morning. Thanks Firstbusman for the info. Glad to hear that you feel better being in permanent AF. I have lots of good information and advice. I feel I have better knowledge when I see the EP. Living with AF is no picnic. It drives me crazy and affects my life in a big way. Keep well.

01maxdog profile image
01maxdog in reply to Firstbusman

Totally agree , being in permanent a fib and controlled by drugs I know where I am , I can forget about my heart and just get on with life . I still do everything I did before a fib 10 years ago but don’t push myself quite so hard

Sally_Scott profile image
Sally_Scott

Hi. Yes I suffered with permanent Afib since 2017. I’ve had numerous cardioversions, some that worked for days, some weeks some bit longer. I’ve had an ablation, during which I had a stroke. I had a pacemaker inserted. In January this year I had open heart surgery for a new mitral valve. I came out of hospital in Afib and a month after OHS had a cardioversion and touch wood have been in sinus since.

Vicmeister profile image
Vicmeister in reply to Sally_Scott

Oh my Sally, you've been through a lot in the past few years. Glad to hear that you are still in sinus. May it continue. Thank you so much for responding, take care.

quanglewangle profile image
quanglewangle

Hello

Life with AF before it became permanent was difficult with slow days and then faints and eventually blackouts. Post pacemaker and permanent AF now life is smooth - daily dog walks and all normal activities. OK mostly a bit slower and sometimes a bit breathless but great QOL. I don’t run much but 13 years on and 80+ l feel great and watch the smokers, drinkers etc dropping off their perches and look forward to the next 20 years..z.

Vicmeister profile image
Vicmeister in reply to quanglewangle

Thanks quanglewangle for responding. What a very positive story. Yours sound almost exactly what I'm going through. I am living with AF since being diagnosed in 2016 but I'm pretty sure I had it many years earlier. It is now progressing more rapidly regarding frequency and intensity. When I convert back to NSR it is becoming scary. Last event I was close to passing out. Cardiologist says conversion pause is most likely the issue. So a pacemaker is what is being recommended. But of course the AF will still be there. I don't want to go through a lot of medical procedures so I'm hoping that my AF will transfer to permanent and still have a good qualify of life and not worry about the constant wondering when AF will strike. Wishing you continued good health

Helen100 profile image
Helen100 in reply to Vicmeister

I have had Paroxysmal AF for many years and there was a significant increase in it around July this year. At the time I thought it was about to become permanent. Then my attacks stopped, and the only change in my lifestyle that I could think of as different was that I had begun a daily dose of spray vitamin B12. My doctor dismissed this as unlikely, but whatever the reason for the improvement I have not had an AF attack since July. I certainly won’t be stopping my B12!

Omniscient1 profile image
Omniscient1

I was diagnosed in permanent AF. So I don't know what it's like to have the paroxysmal attacks that others get - and I'm grateful for that. I have no recollection if what it's like to be in nsr, as I don't know when I fell into AF (probably through intense running).But life is good, everything is normal ( I have other issues not related to the AF) . Being on beta blockers was awful but things settled down now.

Gary

Vicmeister profile image
Vicmeister in reply to Omniscient1

Hi Gary. You are one of the very lucky ones not having the horrid condition of paroxysmal AF and the terrible attacks that I am now experiencing. I'm jealous.....lol. Stay well

PICCASO profile image
PICCASO

Hi I had atrial flutter only which has been cured by Ablation 3 monthsago, was tired most of the time, but now feel like my old self again, have you not been offered an Ablation, hope you get sorted.

Vicmeister profile image
Vicmeister in reply to PICCASO

Hi Piccaso. When I see the arrhythmia clinic I'm sure that ablation will be discussed. I was offered ablations in the past but I always declined because my quality of life was good and my attacks were manageable. I didn't want to end up being in a worse situation. Your situation with the ablation working so well might be because it works better for atrial flutter? I believe ablations have a better success rate for certain arrhythmias. I could be wrong. I wish you good health and hope you stay in NSR.

PICCASO profile image
PICCASO in reply to Vicmeister

Thanks I hope so , you are right about flutter seems to work better as only have to do right side of heart, I hope you have a successful Ablation and wish u well

Vicmeister profile image
Vicmeister in reply to PICCASO

Thanks so much. I will keep you posted.

Desanthony profile image
Desanthony

I do everything I ever did - though as I get older maybe a little slower. I go to the gym at least 4 times a week. My heart rate generally is at about 56 - 58 when resting and I try to keep it low during exercise keeping at 120 and rarely spiking at 130. I use a polar chest strap with wristwatch type read out to keep an eye on my heart rate during exercise - though quite often these days I forget it and still manage to keep a low rate as I am now used to keeping the exercise within those limits.

Find out if there is a phase 3 heart rehab course run in your area and try and get on one they will help you get back into exercise and keep your heart healthy. I got on one that was run by the hospital physiotherapy unit in the local gym so we had a physio and cardio nurse at the sessions. We worked up from light exercise and diet advice in 2 x 2 hourly sessions a week to going into the gym for sessions with a suitably qualified instructor twice a week. I walk as much as I can and we walk miles a day - especially when we look after our best little pal when her Dad is on holiday (she's a little cavapoo called Miss Sweep) and we walk her little legs off!

Vicmeister profile image
Vicmeister in reply to Desanthony

Thank you Desanthony for the positive story. And thank you for the recommendation for heart rehab. Glad to hear you are doing well and living your life. Take care of Miss Sweep. I'm sure she loves her walks even if she is little.

Ellie-Ann profile image
Ellie-Ann

I had permanent AF for almost three years and was on all the meds. I did still go for an hours walk around the woods most days WITH CARE and plenty of stops for a breather now and then or when the tightness started in my chest. No problems.

Had a cardioversion after all that time 10 months ago and I've been back in to NSR since then thankfully. Still on some meds but AF gone.

I go to acupuncture once a month. That’s helped me a lot. Luckily I have a therapist who is university trained in same.

Good luck. Hope you get on ok and stay well. Thinking of you.

Vicmeister profile image
Vicmeister in reply to Ellie-Ann

Hi Ellie-Ann. So glad to hear that the cardioversion worked for you. I sincerely hope that NSR continues FOREVER. I have decisions to make. Stay well. Thank you for the wishes. I will keep updating.

Ellie-Ann profile image
Ellie-Ann in reply to Vicmeister

Most important to look forwards and stay positive. As Julian of Norwich the 13th C mystic said….

“All will be well. All manner of things will be well.”

Stay focused on being positive and don’t let yourself get bogged down too much worrying. All the best to you. Hope you get on ok too.

(I’ve still got S.Angina and am nearly 77.)

Vicmeister profile image
Vicmeister in reply to Ellie-Ann

Thank you for the lovely verse....🥰

Ellie-Ann profile image
Ellie-Ann in reply to Vicmeister

🥰🙏

carkat22 profile image
carkat22

Am in permanent AF after yet another racing heart episode and week in hospital. Consultant fitted pacemaker to stop heart going too slow and medication to stop it going too fast but I am worried about permanent AF also. Not sure whether it is that or the meds that are causing extreme tiredness and shortness of breath. Have though been referred to have urgent ablation, so am waiting to see. So far my heart and arteries are fine despite having AF for years, it’s just my electrics. Best wishes.

Vicmeister profile image
Vicmeister in reply to carkat22

Hi Carat 22

My heart rate goes too low when converting to NSR. It's a horrible feeling. The cardiologist has recommended I be fitted with a pace maker but the fast AF will still be an issue. So medication or ablation may be next. I get so anxious with wondering when next AF event will strike. Sounds like you and I are similar. I will keep posting. Wishing you well. Thanks for responding.

Beatle45 profile image
Beatle45 in reply to carkat22

Hi carkat. You seem to be the first person who has mentioned being breathless. I was diagnosed with paroxysmal af and had a Linq loop recorder fitted. Just over two weeks ago I started with Afib and it still hasn’t stopped.I saw my GP just over a week ago and he upped my meds to 6.25 Bisoprolol and 30 mg Edoxaban.My heart is jumping around all over the place and I feel really breathless. This is the longest Afib episode I have ever had and I feel quite scared. Nearly took myself to A/E earlier but I have a follow up appointment with GP on phone tomorrow so I’ll wait for that.Haven’t even heard from people who fitted the Linq recorder, don’t know why they even fitted it.

Thanks for listening.

carkat22 profile image
carkat22 in reply to Beatle45

I am on 120 mg twice a day Diltiazem and 10 mg Bisoprolol. Understand from our group quite high. Breathing has been terrible as has the tiredness. Checked with my cardio nurse and she confirmed my heart is ok, and I do not have heart failure so trying to be positive and hoping when ablation I will as my GP has said, have better quality of life. This is the longest AF for me too and know just how you feel. Do hope things get better. Cheers Carole

Beatle45 profile image
Beatle45 in reply to carkat22

Thank you so much for your reply. Hope things improve for both of us x

pwoody profile image
pwoody

Hi Vicemister. I have been in permanent AF for the past couple or years and it is the best thing that has happened since having the dreaded AF. I don’t know I have got it now to be honest. Gone are those awful nights when you wake up with it and know you are in for a couple of rough days. I wear a Fitbit watch just to keep an eye on my heart rate but are not obsessive about it. I can do anything I want to, walking, gardening etc but I do pace myself. I will be 80 next year so we all have to slow down a bit once we get older. Once I was diagnosed 5 years ago with Af, I was put on the right medication which controls my heart rate and the only drug they increased when I went into permanent AF was Bisoprolol from 2.5 to 5mg.

Hope this info helps and you will find life easier being in permanent AF as I have.

Vicmeister profile image
Vicmeister in reply to pwoody

Thank you pwoody. Very helpful. Hope you stay well. I will keep posting and let everyone know my journey. Thanks again.

JudyMarieC profile image
JudyMarieC

I've been in permanent afib since 2021. I can honestly say that my quality of life has improved since I no longer have the sudden, intense palpitations that would go on for days, sometimes weeks. I had an ablation in 2017 after being diagnosed with afib in 2016. It was not particularly successful since nothing really changed for me. I had several cardioversions and was on various rhythm control medications, including tikosyn but nothing kept me in NSR for very long. I'm now on digoxin and metoprolol. I also take Xarelto. At 76, I'm able to do quite a bit as far as taking care of my home, exercising moderately on a stationery bike, shopping, etc. I can take walks although anything with an incline is a challenge. As far as damage to the heart goes, I had an echocardiogram last June and my heart function was stable in comparison to an echo done 3 years ago. Good luck to you. Judy

Vicmeister profile image
Vicmeister

Thank you so much Judy for your very positive story. Good to hear that your heart is stable and functioning well. I am hearing that most people feel better being in permanent AF. Better than the horrid AF attacks. Mine are brutal. Going forward I just want to be able to do the things like you mentioned and not have to rely on anybody. I want to be able to walk my dog. I know that climbing hills might be a challenge but that's okay. Don't need to be doing hills....lol. Thanks again and I will keep posting my journey. Stay well.

pilgarlick profile image
pilgarlick

Hard to say really. Sometimes I went a month or two without an episode, and then I'd get two or three in one week. The episodes lasted anything from one hour to twenty hours or so until the day when I didn't go back into sinus rhythm at all and realised after two days that I wasn't going to. I had been told that that would happen eventually, so wasn't altogether surprised. But, as I said, I no longer have the worry of wondering when I was going to go back into normal rhythm and am generally much more relaxed and not concerned with the occasional missed beat or double thump. Hope that I may have reassured you that permanent AF, like turning eighty, isn't as bad as I feared....

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to pilgarlick

HI

BB Metopolol med I proved that I had pauses during the night.

In the latest research with BMJ learning they want more evidence that BBs are not the best line of nipping AF in the bud.

I like you, have better energy raising my B12 to 700+. It id known that older people need a higher B12 level.

cheers JOY. 74 (NZ)

Vicmeister profile image
Vicmeister in reply to JOY2THEWORLD49

I started taking B12 just a few days after getting back a low score on blood report BUT still in range. I understand that you need to take B12 a few months before seeing any differences. Hope I get some good results and my AF reduces even a little bit.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Vicmeister

Hi

Taking B12 via Solgar Gold Top Sublingual daily under tongue immediately gains level. I took 1 daily for 2 weeks and went from 300 to 700 ish.

The Joy of this mode is that it goes straight into your blood stream.

B12 in a capsule form which has to be broken down by your body process doesn't like disappearing down to your stomach. Your low dose level is already due to you not absorbing B12 via food, substances. So by-pass stomach and dissolve under your tongue/cheek.

Go to Vegetarian Health shop or Chemist which has the Gold Top range.

cheri JOY 74. (NZ)

Vicmeister profile image
Vicmeister in reply to JOY2THEWORLD49

Wow. What an improvement in only 2 weeks. Definitely going to check out the dissolving. Makes sense that it goes directly to blood stream and therefore has to increase B12 faster. Thank you for the info.

sheffbk profile image
sheffbk

As stated above - everyone's arrhythmia story is different.

I swim a lot and check my pulse; - about 20 years ago I used to have strange 'racing heart' episodes - no pain, and I'm not an anxious type, but they were at the 'wrong time' - ie when not exercising hard. As there is some heart disease in my family, I reported this but ECGs never found anything. It slowly developed with increasing 'skipped beats' (every 5 beats or so, day and night) - so eventually (10 years ago) I got a physician assistant to 'holter me' -- they then referred me to an EP consultant cardiologist who spent an age looking at my charts and showed to colleagues - variable BP, bradycardia, flutter, long pauses (3 secs) at night, resting pulse 40, AFib much of the time, and said I'd probably had AFib for the 20 years ----- (aside - trick question - how do I respond if a survey asks when I was diagnosed? - one Dr friend said 10 yrs, the other 20yrs).

But, apart from starting to worry a tiny bit, I felt pretty fine.

I have a pretty good lifestyle and diet, but have dropped foods to look for triggers - can find none - have a small drink, some coffee, etc. also have tried magnesium, Q10 (for 3 months plus each) - no effect. The only trigger I note is sleeping on my left side starts a flutter sometimes. Exercise is just fine (quite hard sprint swimming including European Masters Games this year). Rate control (except pacemaker, which I don't have) is no help for slow rate.

Awaiting results from latest scans but looks like things actually getting better re the AFib - resting now more like 50-55, the skips are not so long - ie the permanent AFib is having less effect. My atria are now pretty useless for pumping, but ventricles fine (ejection fraction over 60). As my quality of life is good I chose no procedures and no meds except apixaban - still the case. Age 76.

With all the scans they've spotted something else (prob unrelated) with the heart - so fingers crossed - waiting for results.

Sooo - what conclusion - a variety of experiences out there, but in broad terms I would agree that permanent looks better than paroxysmal and may even improve over time.

Vicmeister profile image
Vicmeister in reply to sheffbk

Hi sheffbk

I too had strange heartbeats years ago. I used to get a lot of lightheadedness and actually went to ER a few times because of them and just feeling strange. Nothing was found. Finally diagnosed in 2016 but I know that I probably had AF for many years before. They have now become more frequent and more intense. That is why I was wondering if my AF might turn permanent. I dread the thought of medical procedures but I also hate the frequent attacks and not knowing when AF will happen. It's so horrible. My last echo showed I have a strong heart. Some minor valve leakage but nothing to be concerned about. My resting heart rate is 55 - 58. I really only have fast heart rate when I'm in AF. My cardiologist was concerned with the "conversion pauses" from AF to NSR. I need to really have a discussion with my EP and make the right decision for my situation. I'm 72 so a bit of life left....lol. Thank you for your story. I wish you the best health. Stay well. I will keep posting.

BillCook profile image
BillCook

Yes, I'm in permanent AF, and have been for about 4 years. I've had 3 cardioversions, with NSR lasting 5 days, then 45mins, then not being restored at all.

It certainly does not affect me as much as paroxysmal did - that pretty much knocked me out for about 24hrs, and then another 48hrs to fully recover after NSR kicked back in.

Nevertheless, it has been pretty hard. OK, I can drive, go shopping, mow the lawn, pretty much anything. But only in a narrow window of opportunity. After about an hour of carefully paced activity then I'm absolutely knackered and need to lie down and sleep. Eating a normal meal impacts me a lot, so I tend to have an active period when I wake, then a sleep after breakfast, then a second active period late morning before lunch and another kip.

In the afternoon we normally give our dogs a walk, which is good but does tire me. After another rest I then move to the kitchen where normally I do much of the cooking for dinner. I normally have a couple of beers whilst cooking (ordinary beer diluted with alcohol-free, since alcohol used to trigger my AF when it was paroxysmal). Perhaps I shouldn't, but this does seem to keep me going, and cooking is one of my few really pleasurable activities left. I used to run and cycle a lot, and had a great affinity for the outdoors, especially hills. Not just walking, I was a member of the Fell Runners Association and also did quite a bit of "scrambling" (unroped but very simple climbing), and I was a pretty good orienteer.

All these are gone now, and it seems sudden. Very fit in my 60s, but from my perspective a geriatric in my early 70s. It has taken quite a while to adjust.

So, to answer you more directly then yes, permanent AF has had a huge impact on my quality of life. I have to be careful not to get too tired or stressed, or to drink too much alcohol. If I do, then I feel really unwell: nausea, headache, breathlessness, an awareness of my heart beating wrongly. Pretty much like the paroxysmal AF I used to have. If I avoid stress and tiredness, then I'm barely aware of the AF in terms of physically feeling my heart misbehave, and I don't feel unwell. But I still get tired at the drop of a hat, and need my rest periods.

Heart rate doesn't seem to be an issue with me at all. OK, its a lot higher than when I was very fit, but I'd obviously expect that now that I'm far more sedentary. My resting HR is about 75-80, which seems reasonable to me (if you trust HR measurements whilst being in AF)

Hope this helps!

Helen100 profile image
Helen100

Please let us know how you go on with the B12. I’m keeping my fingers crossed that my NSR continues, but even the odd one wouldn’t be too bad! I was having four or five a week in July lasting for several hours. Best wishes to you going forward.

Vicmeister profile image
Vicmeister in reply to Helen100

You bet I will let you know. Fingers crossed. Keep well.

Vicmeister profile image
Vicmeister

Thank you so much Bill for your sharing your AF journey. It seems that AF has affected your life from what it was but adjusting. It seems to be a common theme that Permanent AF is a better situation than the horrid AF attacks. But of course it would be great not to have it at all!! Have you considered an ablation? Do you mind me asking if you are on any medication for your AF. You mention that your heart rate doesn't seem to be an issue. I know what you mean by having to adjust. Getting exhausted and having to take naps more often. Just not having the same energy as before. Believe me I know. I will keep posting and let everyone know my decisions and journey. Thanks again and take care

BillCook profile image
BillCook in reply to Vicmeister

I'm on the anti-coagulant apixaban, plus digoxin (125 micrograms once a day) for rate control - although I'm not convinced that it does make much difference. A cardiologist put me on bisoprolol a couple of years ago, but it really made me much worse. I was also on flecainide for a short time, but it made no difference to my AF and didn't really agree with me. I've been offered no other treatment - none of the cardiologists I've seen mentioned ablation.

For me, paroxysmal AF was way better than this. I was paroxysmal for about 40 years. OK, I felt much worse when I was actually in AF, but I always quickly reverted to NSR & quickly felt great again. So I was basically losing maybe 10-15 days a year on average. Now I feel permanently tired and sometimes unwell, so I feel like every day is in large part lost!

Best of luck with whatever you decide to do.

Vicmeister profile image
Vicmeister in reply to BillCook

Thanks Bill for getting back to me. It’s very interesting that you felt better with paroxysmal AF. But I understand why. Having an AF attack can be horrible but the feeling of being back in NSR is amazing. Also I think it depends how often, how long and how you feel when having an AF attack. Being in permanent AF will definitely affect your activities to a certain extent. And being tired more is what I’ve heard a lot. I’m surprised in the 40 years having AF that you’ve never been offered an ablation. I wish you best wishes. Stay well. I will keep updating.

Myya profile image
Myya

I am 89 and have been in permenant AFibfor 3 years. I get lightheaded when I do lots, as I live an active life. Seems I am not as healthy as when I was getting episodes. I take metoprolol and eliquis. Maybe it is just my age, but seems I get anxiety, and palpitations more now , that I am in permanent AF. I get tired quicker. Would love to here more on this subject.

Vicmeister profile image
Vicmeister in reply to Myya

Hi Maya

I'm sorry to hear that you feel less healthy being in permanent AF. Most people say they feel better in permanent AF for various reasons. But most still need to reduce their activity because they get tired quicker just like you. Being in permanent AFIB is definitely going to affect your activities, As for the palpations.....have you seen a cardiologist lately to see if your heart is ok? Permanent AF definitely needs more investigation. Keep well and listen to your body.💖

Myya profile image
Myya in reply to Vicmeister

Thank you Vicmeister, I am seeing a cardiologist on Thursday, I do have some issues, like metal valve regurgitation, so my questions to the cardiologist will be how much that will effect my AFib, and if my activity is making me lightheaded. I will try to post my results. I do love the information on this site!

topherC profile image
topherC

Yes it seems that I am on permanent Afib or AFlutt depending on who talks to me - and I await cardioversion next week. Exercise really should not be attempted and you can expect disruption to almost all you have to do in life to get by. The anti coags often have adverse effects - painful joints etc which can not be treated with NSAIDS - just to make life a little more difficult. I had pacemaker fitted after heart rate became worryingly low and I had syncope episodes. Within days my heart went into Afib/Aflutt and my daily chores are certainly restricted. Keep sane!

GarrBo profile image
GarrBo

Hello Vicmeister

I have been in permanent AF for over 15 years now and it feels a lot more comfortable than paroxysmal AF. It doesn't have much of an impact on my life style and like jeanjeanie50 I can complete tasks in one go rather than in 4 or 5 parts. When I went into Perm.AF it moved me along the treatment curve and helped to resolve other heart issues. I had had 4 ablations through a vein but none were successful so because I also had an ASD (hole in the heart) my cardiologist suggested a Papworth-Cox Maze procedure which involved open heart surgery, and to have the ASD closed. I was told that the ASD wasn't a thing to worry about, as I was already being medicated for its effects.

The left hand side of my heart had enlarged and the muscle wall had thickened but the ASD closure has reversed that and my heart is now mechanically sound. The ablation did not stop the AF which was a pity so I am still in Perm AF.

As a result my heart is about 80% efficient but the only effect that I feel is that I have to walk up hills slowly but I can still walk up them! Everyday tasks are unaffected

I spoke to a cardiologist about the idea of everyone only having a limited number of heart beats but he told me this is not the case and that I would have a normal life span of an otherwise healthy person. I asked him if I would live forever but he said it was too early to tell😊.

I garden every day, mow the lawn when I need to, have a social life that I am happy with and seem to spend every other day shopping.

If anything I worry about my heart rate a lot less than I used to and am seldom aware of it beating.

The most difficult part is convincing my partner that I am not going to suddenly drop dead, sometimes having the condition oneself is easier than living with someone who has it.

Apologies for the rambling answer but I hope it is helpful.

Over all I would say that Perm AF is easier to live with than its Paroxysmal variant

Please feel free to contact me if you want to ask anything.

Vicmeister profile image
Vicmeister in reply to GarrBo

Good Morning GarrBo

Thank you for sharing your AF story. I didn't find your answer rambling at all. I found it very informative and interesting. Thank you so much. You sound so positive and satisfied to be in permanent AF rather than paroxysmal. Of course we would not want to have any type of AF!! Having AF attacks are horrible and I find mine are becoming more frequent and intense. I get such anxiety and my life has changed so much around this horrid condition. I have so much info to discuss with my EP that all of you wonderful people have offered. I am very appreciative. Keep well.

GarrBo profile image
GarrBo

Thanks vicmeister

Keep in touch.

Lulu2red profile image
Lulu2red

The problem with the NHS is they say your blood results are in the normal range but we are all different. I had B12, Folate and Iron panel done, all were not optimal. After supplementing I noticed the following; My hypothyroidism has improved, I have more energy, I sleep better, I am in paroxysmal AF but it seems to have calmed my heart, I'm not getting palpitations or I am not aware of them, I don't wake up in the night with a racing heart. The most shocking thing for me is that it has improved my gait and balance. I kept telling Cardiologists and Endocrinologists that the way I walk had changed, got blank stares. I am not as clumsy. When I researched B12 deficiency the penny dropped. I hope I've caught the neurological damage in time. No way are the NHS going to believe it but luckily I have responded well to supplements.My advice is get tested via an online lab, finger prick blood test and monitor your levels online yourself.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Lulu2red

Hi

I keep my B12 @ 700 - 800.

I was discovered to have B12 deficiency in 2010. Leg movement by my cousin. It turned out it was not Parkinson but "essential tremor"

MEDS for this is a glass of RED WINE or a BetaBl0cker like Metoprolol.

IT AFFECTS MY LEFT HAND.

It is great that Solgar is available and 1 sublingual nugget under the tongue daily will raise your B12.

cheri JOY 74. (NZ)

JOY2THEWORLD49 profile image
JOY2THEWORLD49

hi

I have rapid, persistent (permanent) with AF AND STROKE.

Reason on 4th day, having a CAROTID arteries scan. the scanner said she checks the thyroid - 2 for the price as 1. THYROID cancer or abnormal thyroid traits can give one AF.

New research - they are studying to prove Beta-Lock meds are not great for AFers.

Certainly in my case a CCB calcium channel would have controlled my H/RATE at risk. but i was left for 1 year 3 months on Metoprolol . Side effects - breathlessness, excessive sweating at 187bpm and no energy with stopping with walking as soon as there was exertion.

No follow up.

I asked for referral to H/Specialist. 24-hr heart monitor showed Metoprolol giving me pauses on 47 average night H/R. Regardless of meds.

I proved that my best regime was

CCB Diltiazem 120mg AM for RATE CONTROL.

BB Bisoprolol 2.5mg PM for BP control.

I have settled on 110-130 / 69. and 60s DAY H/RATE.

Leaving me on such a high H/RATE for so long gave me a damaged heart chambers. Enlarged back chamber.

I would suggest you visit a HEART SPECIALIST who is PRIVATE and interested to start with.

Then you can go back to public for tests like ECG, ECHO to prove you are controlled.

RHYMN is not important as controlling H/R and BP.

Now I am improving walking and exerting myself up elevations. can't run as I have regurgutation in right valve and dilated left valve. Pressure is normal. SYSTOLIC NORMAL in both valves.

STRUCTURALLY my heart is abnormal so no ablation, cardioversion or anti rhymnic drugs.

Even when thyroidectomy was done with 12 right lymphnic nodes removed my heart did not go back to normal rhymn.

My removed nodes showed up 2 infected.

I declined RAI and suppression of TSH. Both are toxic situations.

2 years later LOW RISK PATIENTS DO NOT NEED RAI OR SUPPRESSION.

I had no RADIATION with a carcinoma in situe in milk duct.

That was 2006.

Same surgeon.

HE fought to have my thyroid operation a.s.a.p. He won. Backed by ANAESTHETIC who also had thyroid cancer which spread down to lymph node central so he had RAI and suppression.

I was done in 4 months post stroke.

THE LAST ECHO NOW SHOWS THE CHANGR - CONTROLLED H/R .NO MORE CHECKING AN RECHECKING H/R. no operations when H/R is over 100 at rest.

I had my hopefully last operation - right shoulder repair.

So it is so important to CONTROL your H/Rate. Also BP managed as well.

cheri JOY 74 NZ

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