Peace at last.: I have suffered from... - Atrial Fibrillati...

Atrial Fibrillation Support

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Peace at last.

Tudee profile image
80 Replies

I have suffered from Paf for years, and spent many an eventful night in A&E, now inevitably I am in Permanent AF and at least as it is well controlled I have some peace, I never wake up in fast AF in the small hours, nor worry about at all, it doesn’t happen. I read the posts of friends here and I feel deeply for them and that horrid fear that goes hand in hand with bad episodes, it is living on the edge, does anyone else feel my sense of relief.

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Tudee profile image
Tudee
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80 Replies

I have had PAF for 3 1/2 yr now but no episodes for almost a year( thanking God). My mother had permanent AFib, no symptoms she could feel and lifted to be 97. She was healthy and active up until she died. Funny part was her nutrition was awful!! She lived on little snack sized candy bars, pepsi and coffee. I do not remember her ever drinking a glass of water, lol. She would eat well when we all ate together but left to her own devices, her sweet tooth won.

Tudee profile image
Tudee in reply to

Thanks Hoskli, that gives me hope for the future, your mother sounds wonderful, her own person ! She also gives me a licence to be a little naughty with my diet as Im only a young 75yrs.

in reply to

Hi Hoski. I can relate. My mother in later years thought a can of Vienna sausages and triscuit crackers with spicy german mustard was the world's best meal. She lived to be 89 and wasn't sick until just before she died. x irina

in reply to

Love that! I think it would b healthier with a cold beer!

in reply to

You're right. Or 2!! LOL

in reply to

Yes 2😉

Auriculaire profile image
Auriculaire in reply to

My gran also lived to one month off 98. She lived on white bread sandwiches and Meals on Wheels and took virtually no exercise. Having been put in corsets as a teenager I doubt she ever ran for a bus! She was a creaking gate and positively enjoyed ill health for more than half her life and doctor visits were a highlight. But there could not have been much wrong with her to live so long.

Tudee profile image
Tudee in reply to Auriculaire

She sounds a delight, she was of her time, made tough by wartime hardships, and post war rationing perhaps, I wonder how the millennials will cope when Brexit happens, not too well is my quess.

Auriculaire profile image
Auriculaire in reply to Tudee

Actually she was not a delight. She was quite selfish and liked to be waited on hand and foot! She had no consideration for her poor daughter-in-law ( my mother ) who dragged herself over to visit her several times a week despite suffering from rheumatoid arthritis.

BobD profile image
BobDVolunteer

One of our members when commenting to a leading EP that his AF was permanent got the reply "Lucky bugger". It does seem that events are more stressful than constant AF which the body gets used to.

in reply to BobD

I'm a believer!

meadfoot profile image
meadfoot

So pleased to hear you are now living in peace from this awful condition. What a relief for you and thank you for you for your support of those of us still struggling with this nasty condition. Be well and enjoy your improved life. X

Tudee profile image
Tudee in reply to meadfoot

Thankyou for your responses one and all, the battle goes on

in reply to Tudee

It must feel relieving knowing our unwelcome guest AFib now sits in your servants quarters, not a guest at the dinner table🤣🤣🤣. It has taken me 3 1/2 yr to finally not think about a f on a daily basis!

Tudee profile image
Tudee in reply to

That is a wonderful analogy, yes for now I can say “ know your place” , but I won’t just in case,,,......shhhh

in reply to Tudee

Manners

Nataaron2 profile image
Nataaron2 in reply to

Very funny... hahahaha.my guest room is available, can't wait lol

rosyG profile image
rosyG

well done- good to hear you are now worry free!

I think you raise an interesting point. In my case I was diagnosed with lone persistent AF back in early 2014. Prior to diagnosis I was not really aware of any problems other than some occasional shortage of breath which I had put down to the re-emergence of mild asthma. I had even considered cancelling the GP’s appointment. The consequences of the diagnosis were immense and largely driven by my inability to cope with the situation in a sensible and rational way caused entirely by fear of the unknown. In truth, my physical condition had not changed but life became a whirlwind which I am sure many of you can relate to and as a result, I felt dreadful.

I now know many people with controlled persistent/permanent AF and they have adapted to their situation and lead virtually “normal” active lives. I can fully understand how those who have had to cope with the stress and strain of paroxysmal AF actually benefit once it becomes permanent. I often wonder what my current situation would be like had I accepted my AF and not pursued the route of treatment. Fortunately, I have no regrets and I don’t dwell on what might have been but it does show how difficult it can be to know what to do for the best. I hope all stays calm now Tudee and wish you well for the future....

Tudee profile image
Tudee in reply to

Many thanks Flapjack, I wonder also what would have been my outcome had I accepted the offered ablations Who knows .............?.

in reply to

Maybe we can start a "Happy we're finally in permanent A-fib" club. It would probably give a lot of hope and encouragement to those just starting this long and winding road.

irina 🐱

Tudee profile image
Tudee in reply to

I agree Irina, what a great idea, we could start our own forum, call it “ constant fibbers”, my mum called me and my brother that as kids, and we were

Dee

in reply to Tudee

Are u telling “porky’s” there Dee.......😂👍😂

in reply to Tudee

I second the club's name!!

in reply to Tudee

Wicked little girl!!LOL

Tudee profile image
Tudee in reply to

Oh Irina, have you been reading my diary again ? Tut tut.x

in reply to Tudee

Flapjack sent it to me!!

Paulbounce profile image
Paulbounce

I think once you know you are in permanent a-fib it might be a welcome relief.

Your body (and heart) will adjust and often, you`ll not even know you have it. Side effects (eg stroke) can be controlled.

There`s also another plus to consider. In another 5 - 10 years medicine will have jumped light years ahead with regards to a-fib. I can`t promise but I`ll bet I could be right. Even now it`s improving. I`ve mentioned on other threads about new stuff coming out right now. It`s nearly here. Procedures for ablation can be mapped out in much more detail. They can 'hit the right spot' so to speak. Give it another couple of years and the procedure could well be perfected - let`s see.

There`s no guarantee of course - please don`t get any false hope from my post. However I think (this is just in IMHO) that give it 5 -10 years, ablation / CV`s etc, will be a thing of the past. Maybe it will be more 10 years rather than 5 years - however it`s on the way.

Let`s see how it pans out.

For me it`s a good sign. However that`s only because of my age. Around 65 seems to be a risky age group according to my cardiologist. This is when you might go on permanent blood thinners etc. I have quite a long way to go yet until I reach that age group. By the time I do, I really believe other treatments (or a cure !) will be there.

My advice is this. Be on the ball. Do your own research online and keep up with new procedures. Don`t miss a thing. It`s unlikely your doc will tell you about new treatments or drugs. The chances are they won`t even know about them.

Have a great weekend.

Best,

Paul

in reply to Paulbounce

I agree with your points Paul. I would like to add that if there are unhealthy things in our lifestyles, habits, stressors, foods, etc... now is the time to make changes. Improving our health is our responsibility, we need to be proactive. I’m 66, over the last few years I’ve made changes. Wish I would have done it st a younger age but better late than never😉

Paulbounce profile image
Paulbounce in reply to

Don`t worry Hoski - 66 is the new 46 heheh.

Best,

Paul

in reply to Paulbounce

Tell that to my knees, they think they are 96!!!

Auriculaire profile image
Auriculaire in reply to

Mine too. Especially in damp weather.

Tudee profile image
Tudee in reply to Paulbounce

Many thanks for your thoughts Paul, and of course things move quickly and are available then in the big centes of excellence, but if one lives in the sticks , another story, I once asked my GP if I could see an EP, she replied “what’s that” I rest my case. I wish you well Dee

in reply to Paulbounce

😊👍

in reply to Paulbounce

That's so true, Paul.

When I got my pacemaker in 2016 my EP showed me what it would look like when I came to sign the consents.

The last pacemaker I had seen was before I retired from the O.R. The pacemaker was thick and bulky like a deck of cards and elevated the skin so everyone knew you had a pacemaker.

Mine is very slightly larger than a US quarter (similar to your 1 pound coin.) I couldn't believe how small it was. I don't even feel it.

Now they've even improved on that. Several pacemaker clinic visits ago the tech showed me the latest model my EP is using.

It is leadless, is the size of a fairly large capsule (no bigger than a pill we could swallow. And is implanted under the skin in the leg. Amazing!

in reply to

I was fitted with one of these in February. It was inserted via my right groin and was attached to my right ventricle ... no more infections thank goodness

in reply to

Hi moses. I'm very happy yours went well also. I think they area boon to AF treatment.

Anticoagulants-whatever kind-are often a necessary part of Afib treatment but IMO are a very harsh drug to be taking long term-especially as we age.

Very happy they are out of my life. 😊

reinaway profile image
reinaway in reply to

My husband has just had one of this kind implanted and has joined the arrithmyia crowd. You can barely feel it under the skin

in reply to reinaway

Hoping his recovery goes as smoothly as mine. I gave mine a name: 'Sydney" We are very close. I figure since we sleep together we should be on a first name basis! (Afib is easier with a sense of humor.)

Take care. irina

Love100cats profile image
Love100cats in reply to Paulbounce

What an encouraging post! I've been trying to make sense of all the h.f. ailments and where I fit in the scheme of things. I've not had afib long but it's permanent but I've been discharged from hospital care because the meds are doing their job. Now it makes sense why some of you are having procedures etc. The hospital Dr. Did say I might need mechanical treatment but nothing since. So I'm fortunate really that I don't have all these ups and downs.

I do (feel a huge sense of relief). When my Afib went 'permanent' I had a Pace and Ablate (US) in 2016 which has worked like a charm for me. I was able to get off all my cardiac meds which because of side effects for me were worse than the AF. I only take 40mg of Lasix now. And some days only need to take 1/2 that dose.

In a previous post I described how feeling well without the ups and downs of going in and out of AF is like not having to constantly wait for the other shoe to drop. And what a relief this feeling is.

I took it a step further last year and was fitted with a Watchman device so I could get off coumadin and not have to take any anticoagulants. This is the cherry on my ice cream soda.

Now Afib is the least problematic of any medical problems I have.

I'd do it all again if necessary only I wouldn't wait so long. Stopping some of these dreadful cardiac meds (and I had to go thru trial and error frequently) is, for me, a gift from the gods.

Don't mean to gush but these treatments have enabled me to put afib on the back burner eliminating a lot of daily anxiety.

xx irina

Tudee profile image
Tudee in reply to

It’s so good Irena not to be living on that knife edge, keep smiling.

in reply to Tudee

😋

Mary-miles profile image
Mary-miles in reply to

Hi Irina.I too had a successful ablation and the only med I have is rivaroxaban.As a side effect lots of har loss and it’s devastating.Was it your desicion or your Drs to have the watchmen device?Or was it because you had a bleed.Thanks Mary

in reply to Mary-miles

Hi Mary. It was my request. I'm in the US and I think it might be a little easier to be approved here as our medicare/insurance system works differently than the NHS. If our doctor believes there is justification then insurance (for me Medicare plus my private insurance) will almost always approve payment. The key for us is having the doctor document necessity then insurance will cover.

Here's how my scenario went. Diagnosed with AF in 2011. Was started on Pradaxa as my anticoagulant.

I didn't feel well on Pradaxa (lots of more than mild G.I. symptoms). Then a few months in was walking the dog one night and tripped over a broken sidewalk. What should have been a small cut over my eye that had I not been on the Pradaxa I could have cleaned up and dressed myself at home turned into major bleeding necessitating a trip by ambulance to the Emergency Room with sutures. Not a problem re the cut but I didn't like how much bleeding I had.

I am a retired nurse and had a lot of experience with patients over the years with coumadin/warfarin. I felt tho it can be a harsh drug I liked the fact it had been around many years, was tried and true, and I especially liked being able to control my INR with self testing and felt safer being able to test and regulate bleeding levels.

I tend not to trust many newer drugs that are thought to be easier, newer, and better. For me, I feel many have not been around long enough to really have a clear picture of long term side effects. I also like keeping my meds to a minimum when possible.

So I asked my EP to switch me to Coumadin. I didn't mind the testing which soon became monthly. So then I asked to be able to do my own testing at home (again-yes) and I also asked to do weekly testing. (Yes.)

My EP agreed with me that once a month testing leaves a long time in between for INR's to drift out-of-range and stay there with unknown INR numbers until the next test. He and I believed one test number is just a snapshot in time for that moment and a lot of problems can develop during such a long time between tests.

I continued self testing until late 2017. This drug and self testing worked well for me and enabled me to keep tight control over my INR numbers. But I was in my early 70's and began to see occasional articles about small bleeds with anticoagulants that often weren't picked up and may overtime possibly contribute to Alzheimers. The documentation was new and sketchy and mainly anecdotal but it was enough for me to want to eliminate this risk. I called these little mini bleeding occurrences 'under the radar' bleeding that in my opinion over time could cause problems.

I didn't know what the Watchman procedure was. I knew the left atrial appendage (where AF clots are presumed at originate) could be closed off but I only thought it had to be an open procedure. The Watchman is done through catheters. In December 2017 I mentioned during my visit I really wanted off all anticoagulants and was offered the Watchman.

I fit the criteria and had it done in January 2018. The procedure went smoothly, without incident under general anesthesia with an uneventful recovery. There is a post op protocol for slowly stopping anticoagulants to be sure the appendage opening has fully sealed off. During this time coumadin is continued. About 4-6 weeks after the Watchman is inserted a TEE (TOE-UK) is performed. If it shows complete occlusion has taken place the coumadin is stopped and the patient is placed on Plavix (clopidogrel) plus a small dose aspirin for about 4 months longer. Then all meds are stopped. And the Watchman insertion is complete. I was finished with the whole process by August 2018.

I am happy I had it-one less drug with its possible side effects to take.

If for some reason I had to go back on anticoagulants I would choose coumadin and self testing again. There are other easier to take meds with no testing. But I felt very secure always knowing my INR number and being able to adjust my dose as needed.

Probably more than you wanted to know. I would suggest if you

want to know more speak to an Electrophysiologist. They are the cardiac specialists who perform the procedure. At the time I had mine it was more common for GP's and regular cardiologists to sometimes be naysayers about the procedure as some didn't seem to have the knowledge or experience to feel comfortable recommending and tended to discourage patients. That may have changed now but I would still stick with an EP to get my info.

There are some good videos online showing and explaining the procedure. Just google Watchman Procedure or Left Atrial Appendage Occlusion.

Hope this info helps and please ask if I can answer other questions. Feel free to PM if you want.

Take care. irina 🐱

lakebudd profile image
lakebudd in reply to

I just read your very interesting response regarding afib and a Watchman device. I have heard about the device but neither my EP, cardiologist or GP suggested it for my permanent afib. I had two ablations which didn't keep me out of afib for more than a year and then right back in again. I had several CVs which only kept me in rythm if I took rythmol (an anti-afib drug) but my BP went up and I don't like to keep adding more drugs with their unpleasant or even dangerous side effects. As far as blood thinners, I was on warfarin but my EP switched me to Eliquis but that drug made me nervous, not knowing my INR number. While on Eliquis I started getting terrible skin discoloration almost like bruises, but not really bruises according to five doctors I saw. No one knows why this is happening and it is very distressing. I have to always wear long sleeves and long pants and now with summer coming, that's going to be hard. It looks to me like bleeding under the skin or bursting capillaries. I was told not dangerous but it doesn't sound healthy to me. I stopped Eliquis and now back on warfarin. Bruise marks still there. How do you get a self testing device? I like the idea of testing more than monthly. Can you buy it online or must it be prescribed by doctor? I love the idea of getting a Watchman. I have Medicare so being covered by insurance shouldn't be a problem. Afib and drugs just make me so tired and lack of energy. I like the thought of having a permanent solution. Thanks again for you contribution to this site.

Irene

Paulbounce profile image
Paulbounce

I understand Dee. If I said to my GP I wanted an EP he would buy me another pint (EP = extra pint) heheh.

Best,

Paul

Tudee profile image
Tudee

My kinda quack !,!

Tudee you give me great hope. Have turned down an ablation with a view to my AF becoming permanent. Roll on.

Di

Tudee profile image
Tudee in reply to

If you have made an informed decision with all the facts before you Hylda, good luck, I feel better than I have in ages, not sleeping with one eye open, I forget I’m in AF most of the time as there is little to remind me. Dee

in reply to Tudee

Maybe a bit premature, just gone into Afib although the only way I really know it is my Apple Watch and the fact that I have pulsatile tinnitus and can hear it!

Maril1 profile image
Maril1

I had permanent aflutter for God knows how many years before I was diagnosed in 2006 at 45 only found out when I put on my sons HR monitor (he was a swimmer and had to wear one) but I new there was something wrong when playing football I used to come to a stop before getting out of breath . Drugs don't work (song?) After many cardioversions an ablation cured it touch wood. I have since suffered from paf which is a lot less tolerable as HR goes to 150/170 and is all over the place like rollercoaster and fireworks going off in my chest tend to treat it like a headache as it only lasts up to 8 hrs but the attacks are increasing to more than once a week and a full time job.

Note , found out by accident on holiday when I went into Aflutter that a couple of pints of lager( 4 or 5 if it suits) put my heart back to normal for up to 24hrs ideal for holidays.

cuore profile image
cuore in reply to Maril1

Are you making arrangement to get an ablation for your AF?

Maril1 profile image
Maril1 in reply to cuore

I haven't been to the GP for years and it's 9 years for the consultant . Every time I want to do something about it I can never get an appointment (phone at 8am on the dot and all appointments have gone by the time you get through) It's an Indian doctors practice they know how to play the game! I lead a relatively normal life otherwise

Tudee profile image
Tudee

Well if that is the cure we have all been seeking Maril, world dominance awaits. Good wish’s Dee

concup profile image
concup

Hi Tudee

So good to hear from another person with permanent Afib,

I read the stories of many people on this site and the things they go through to get back to sinus rhythm, undergoing all sorts of interventions, some of which are successful and others that are not.

like you I had Afib off and on for over many years, and when the inevitable happened and I went permanent I can recall asking my cardio whether I should just accept my fate and just get on with life....he simply said...…. "hell yeah, why not? …….It wont make any difference to you lifespan even if we do convert you back to sinus mode"!!!

Bit of a shock (no pun intended) at the time, as I was expecting him to suggest medical action,but I was happy to take his advice, somehow it gave me a very deep sense of serenity and calmness, quite strange really.

So here I am ,same as you,no more stress and worry of waiting for the next episode, no more waking up with Afib in the wee hours,

For me I can now sleep on both sides, have a beer when I feel like it, eat what I like etc etc. I enjoy a slow walk on the beach when I feel like it, and just enjoy life …… (a lot of catching up to do my wife reckons)

I take Apixaban and low dose aspirin (some studies say no, but my Dr says yes, and so far so good. Just have to watch out for buses LOL!

cuore profile image
cuore in reply to concup

Are the "cardio" and the "Dr" you later mention the same person? Have you asked your Dr why he/she is prescribing both Apixaban and aspirin when you have AF?

concup profile image
concup in reply to cuore

Hi Cuore,

I was diagnosed with a heart murmur some 35 years ago and I have taken a "baby" coated aspirin ever since.

When I was first diagnosed with Afib in 1992, I decided to just continue with the aspirin, as at the time there was not a lot else to take.

In recent times, given the medical advise not to take Aspirin for Afib, I have looked at most of the studies done that showed a benefit of the newer anticoagulants (apixaban etc) over aspirin, however if you really look hard there's not a lot in it, depending on how the studies are interpreted.My wife is a medical researcher with a drug company, so she has been a real help

When I went into permanent Afib 2 years ago I was given a major heart exam, including an angiograph which showed I had a coronary artery that was 90% blocked so I had a stent put in.

Afterwards I had a talk with the head of cardiology at Blacktown Hospital and it was agreed to stay with aspirin,( given I have been taking it for so long) add apixaban for life and also clopidogrel for 12 months.

So far so good I guess.

Cheers

Dave M

cuore profile image
cuore in reply to concup

So pleased to hear that you have done extensive medical research and are up-to-date. I have done minor reading about the benefits of aspirin when there are other heart issues. I looked up clopidogrel and it 's another anti-platelet.

Thank you for the explanation on how the two ( anti-coagulant an anti-platelet ) can be combined when there are other heart issues besides AF.

Also cheers to your continued good health.

Thomas45 profile image
Thomas45

I've been in permanent AF for about 3 years now. Apart from being able to feel the irregular beats when my left ear is on my pillow when I'm in bed, I think it doesn't affect me.

I do have other ailments. I had Polymyalgia Rheumatica from 2013 until about 2017, (I still get bouts of fatigue). I have lymphoedema in my lower legs so wear knee length compression socks, I have asthma which is normally controlled by inhalers, and for the last year chronic urticaria. I am generally active but not good at walking. I fear falling over. I am '6'7"tall and have long legs. I probably should have a walking stick but I will put that off a while longer. I am 73.

I have a propensity of having very rare side effects of drugs which tens of thousands of others tolerate well, (three antibiotics, two bisphosphonates, one new anticoagulant and beta blockers.)

I have a follow up colonoscopy on Thursday and have started the boring diet prior to it. Follow-up, as I had a benign polyp removed from my sigmoid colon 30 months ago. I am relatively active and involved in village life. I have compiled and try to keep up to date a village website.

Auriculaire profile image
Auriculaire in reply to Thomas45

Can I ask please - did your PMR just go away of it's own accord or did you have steroid treatment? I suspect I might have this but there is also the possibility that the pain in my hips and thighs is caused by muscle and tendon problems due to fluoroquinolone toxicity as I also get tendonitis in areas not normally affected in PMR.

Thomas45 profile image
Thomas45 in reply to Auriculaire

I had steroids my doctor said I had to slowly reduce the steroids but that I should determine how slowly as I knew how I felt better than he did. He gave me decent quantities every 6 months.

Auriculaire profile image
Auriculaire in reply to Thomas45

Thank you. When you stopped the steroids was the PMR completely gone?

Thomas45 profile image
Thomas45 in reply to Auriculaire

I thought so at the time, although I do still get intermittent episodes of fatigue when all I want to do is rest, but that might be nothing to do with PMR.

Tudee profile image
Tudee in reply to Thomas45

You have a lot going on there Thomas, all of which must be a trial for you, yet you seem relatively content, being busy with village life. I too hear my heart beat in my left ear, my GP called PulsatileTinnitus, it is a constant with me, but I look on the bright side, I am my own monitoring device, cheaper than a Kardia. I wish you well with the colonoscopy on Thursday. Do let us know how you fare. Dee.

Snnapdragon123 profile image
Snnapdragon123

What meds do you take for your permanent Afib?

Tudee profile image
Tudee in reply to Snnapdragon123

Hi there , I take Bisoprolol 3.25 mg daily, with Flecainide 50mg and Apixaban 1 twice daily, at night I take Lisinopril 5mg. My HR is 65/72 average and B/P 135/70 average.I am an active slim 75 year old with a very high Chad score.hooe this helps .Dee

FancyPants54 profile image
FancyPants54 in reply to Tudee

Hi

Do you think you would have accepted it being permanent and on those meds if you were my age of 55? I have been in AF now for 6 weeks, after the odd scattered attack over the years. This time it's different. It's quieter but not stopping. At the moment my biggest issue is the heart rate is too high at 95/100 resting most of the time. But I don't have the chaotic pounding so much.

When it started I was in a right state. Irene talked to me about her permanent AF and after a while I started to calm down about it. I have terrible loss of energy anyway, from something else that has wreaked my life for years now. But I have my cardiology appointment in 2 weeks time and am wondering which way I want to go. To be honest if they could bring the heart rate down without turning me into a zombie, I'm wondering if this wouldn't be tolerable. At the moment I'm on 2.5 Bisop. and 5 Digoxine with anti coagulant. I tried 5 Bisop. but felt terrible on it and heart rate didn't come down but BP fell too low.

If I should eventually find my way back to energy from my other problem, would I be able to ride my bike, hike the fields and dance again in permanent AF? Do the gardening and decorating again etc? Or is that unlikely?

PS. This is the first post on this site that hasn't made me either depressed or panicked. Thank you for that.

cuore profile image
cuore in reply to FancyPants54

So now you are 6 weeks into persistent AF. As you are only 55, I do not understand why you would be looking forward to permanent AF rather than an ablation to get you back into sinus rhythm. It takes one year in persistent AF to be labeled longstanding AF. After that time period, the AF is labelled permanent when you and your doctor mutually decided not to do any procedure. A year goes by very quickly during which there will be more and more rotors developing in your heart.

Thomas45 profile image
Thomas45 in reply to Snnapdragon123

I take none, except of course an anticoagulant, Warfarin being my choice. I have my own Coaguchek monitor to test my INR whenever I want. I email the results to the Arrhythmia nurse.

Tudee profile image
Tudee

Hi there, I wouldn’t want to accept permanent AF at your age, there are so many meds and new ones on the horizon,you have time on your side to explore other avenues. The yardstick seems to be how bad the effects of AF on you, I’ve never had chest pain with it, just a little dizziness, and of course that dreadful fear factor, it’s so good to have that lifted... for now, please discuss fully with your professionals.

I garden, I’ve just finished decorating my bedroom, I walk twice a day, and Im full of energy. I am optimistic about my life and will meet trouble when it comes, no doubt from my lovely friends here as they have done in the past. Your meds seem to sap you and you are not at your best, you have a chance now to have a full talk with your cardiologist, sometimes you get the service you demand, I do.! Good luck don’t forget to tell us how you fared. Best. Dee

Jfjfern profile image
Jfjfern

Wow this gives me hope . I have had PAF since I was 37 and everyday revolves around it . I dread going to bed Incase I have ate something that I don’t know will give me AF in the night .Its such an arful condition .

cbsrbpm profile image
cbsrbpm

I must say that before my 1st ablation I was in persistent AF, managed it quite well apart from the breathlessness but I was getting the best sleep I had ever had, since being diagnosed with AF, during that period. Now having very occasional AF episodes but no sleep again due to the anxiety of an attack. Mmmmm I’m never satisfied 😂

By the way my Mother lived to 94 didn’t have AF but

Never exercised in her life

Thought a glass of water would kill her

Ate whatever she wanted

Never worried about her weight, but never had a problem.

Ohh I do miss her ♥️

Brenda

Tudee profile image
Tudee

Ah Brenda, it’s lovely to think of your mum like that, that generation saw so many hardships, she sounds such a character. Great to have such memories Dee

nicenurse profile image
nicenurse

Both of my parents are in permanent AF and do just fine. Both are 90, and neither has any awareness of the arrhythmia. No shortness of breath, no exercise intolerance, no symptoms at all. Their medications to control rate are well tolerated and both are on anticoagulants that do the job without the constant blood draws and dosage adjustments typical with Coumadin/warfarin. They have excellent qualities of life. I suspect you'll have a similar experience, and you already have a great attitude!

Tudee profile image
Tudee

Many thanks, how wonderful for you to have both parents to enjoy and care for, your story gives me greater confidence for the future, many thanks, Dee

doodle68 profile image
doodle68

Hi Tudee :-) it's good to read your positive views on being in permanent AF .

I am expecting to achieve that status myself one day and it is comforting to know there are people who cope with it really well.

For the moment I live with and manage my PAF which really isn't so bad if you conquer the anxiety that accompanies the episodes and remembers to take your anticoagulants without fail to reduce the chance of a stroke .

Tudee profile image
Tudee

You are so right Doodle, the worst part of an attack is the fear factor, the shall I, shan’t I, get help, which of course raises the HR. Oh and the thought of A&E again ..... although I am not complacent Ifeel at peace with my condition. Best wishes, Dee

reinaway profile image
reinaway

Just had a 9 hour episode of pAF consisting of heart rates from 120 to 170 in one beat and awful chest pain from complaining arteries and oesophegus and could not imagine permanent AF with the symptons I suffer.

Tudee profile image
Tudee

You must be exhausted, I hope you have support at home, we who have had Paf episodes have all been like that, I can only tell you, that persistant AF for me is a time of calm, my heart rate and bp are settled and well controlled, no great ups and downs, I exercise daily having Spinal Stenosis, I walk twice a day, decorate, lead a normal life foe anactive 75years old.

I do hope you settle quickly and get the help you need. Best wishes Dee

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