looking for suport

[UnaY66]

Hi I am 51 year old fitness instructor love my job just being diaganoised with AF totally devastated would love to hear from others like - thanx

[doodle68]

Hello Una welcome, tell us a bit about your experience of AF, how you discovered you had it/symptoms/ any medication.

There is a wealth of information on here from fellow sufferers who must be some of the most informed people on the subject in the world so settle in and know you are not alone .

First thing is don't be devastated, once you get over the shock of diagnosis you will find you can live with AF

This is the main AF site, many of your questions will be answered here...

heartrhythmalliance.org/afa...

[UnaY66 in reply to doodle68]

Hi I was getting fast beats almost 2 years now since my husband died and usually after a glass of wine it was while I was doing a class at work became I'll taken to hospital and handed a leaflet AF and put on 2.5 beta blockers which is trying me out when I am use to being so fit - thanx Una

[SprintMark in reply to UnaY66]

Hi Una

This is my first reply to a post and i must admit I probably have less knowledge than a lot of the guys and maybe i have a different angle to some of the respondents. Firstly i am 56, a personal trainer who does a lot of weightlifting and I am a pretty decent sprinter (top 10 in uk). I had palpitations at the start of 2017 but ignored them. In Feb 2017 my heart went into flutter for 3 days and altho the GP ignored it I insisted on an ECG as i knew from the readings on my sports watch what the problem was. I had cardioversion which worked for a few weeks, i had my first ablation for the flutter in May ...they discovered AF...second ablation in August 2017 for both AF & flutter (again) I'm on apixaban and & Bisoprolol. I am using exercise as my mental and physical recovery BUT I know many many posts suggest that caution is taken and not doing too much too soon so this is just a personal approach not necessarily the right one.

No alcohol at all / no processed foods / a quality magnesium supplement (do your research)

I have walked 10-12000 steps a day since two days after the ablation. I do a gentle 3 mile run once a week / I do light weight training 5 times a week

I still wont sprint or do 'jerky' type movements. I use my sports watch all the time to track heart rate and use the Kardia Mobile by AliveCor monitor.

in the four weeks since the last ablation I have felt increasingly strong, less fuzzy, more alive. I know people will say im doing too much but this is my personal approach. I am setting targets for myself physically and determined that AF will not stop me from getting back to being a decent sprinter.

Good luck

Mark

[UnaY66 in reply to SprintMark]

Thank u Mark as I love my fitness so much it is a great help to me xx

[SprintMark in reply to UnaY66]

Una

Im happy to share workouts and more general feedback on how i am incorporating exercise in recovery. The thought of never being able to bodybuild or sprint again seemed scary but i know it will be possible. feel free to contact just via e-mail rather than us the clogging up the forum [e-mail]

[Hidden in reply to SprintMark]

Is your GP ok with you still doing weightlifting?

I read that lifting very heavy weights puts your blood pressure up quite high during the lift. Apparently that can cause a brain haemorrhage if you take anticoagulants. I suppose that would be more likely if your INR was too high.

I believe it is also true that long term over exercise can cause fibrosis of the heart leading to atrial fibrillation. Maybe sprinting is not ideal if you want to avoid further ablations.

[pamb76 in reply to doodle68]

hi thete my sins 30 and had bad elusode if af collapsed and had cardiovetsion oit looked back since no mire treatment no af x

[BobD Volunteer]

Hi Una and welcome to our world. First thing to say is that AF will not kill you. It may change your life though and sometimes for the better.

I don't know how hard and fast you train but you will most likely know that endurance athletes are prime candidates for AF due to the strain they put on their hearts so just be careful how much you do . Exercise is good but in moderation.

WE have all been where you are now and felt our worlds had come to an end but they haven't. Read all you can on AF Association site as knowledge is power.

Make sure that you are treated by the right people and that may not be your GP. Good as they may be specialists are best and even ordinary cardiologists may not give you the best advice. If you do not get satisfactory progress in a few weeks ask to see a rhythm specialist.

Consider you life style. Apart for exercise! Cutting out alcohol, reducing meat intake and reliance on processed foods, moving to a more plant based diet, cutting out caffeine and stress, all have been shown to improve quality of life and hopefully reduce the AF burden.

Ask us here any question about this mongrel condition and we will try to help.

[UnaY66 in reply to BobD]

Hi I started getting fast beating about 2 years ago after my husband died they didn't last long thought it was integration and continued on ad normal I turned to fitness after he died plus I work as a fitness instructor at Centre Parcs it was doing a class that I got an attack and got taken to hosp they then told me what I had and put me on beta blockers which I find knackering and I just feel totally devasted I was out night before and had a glass of wine thanks for listening to me Una

[rosyG]

Hi Una,

Agree with all Bob's comments- you are young to have meds for a long time ahead so important to ask to see a consultant to advise

[Finvola]

Hell Una and welcome to the forum. Diagnosis of AF is a dreadful shock and our minds go into hyperdrive with anxiety, fear of the future and the unknown. I'm fairly certain each one of us has felt as you do. The good news is that there are things you can do to make your life better.

As others have said, become knowledgeable about your condition and the options you have for dealing with it, I would advise doing as much research as possible prior to seeing a heart rhythm specialist as you will (a) know what he is talking about! and (b) be in a position to add informed opinion to his suggestions.

Beta blockers are the first choice of limiting drugs for most people and many of us have found them hard to cope with - breathlessness and washout being common complaints. Remember though, this is only the beginning . . . you are young and fit and hopefully the right approach from the right specialist (an EP - Electrophysiologist) will make things seem a lot better.

Read up on what to avoid - eg artificial sweeteners, flavourings, colourings, alcohol possibly, processed food - the list is long and may not all apply to you. The worst enemy for all of us is stress so try to use calming methods such as relaxation and meditation, especially now when everything is new and frightening.

Your GP can advise you about seeing an EP. If you live in England, I believe you can choose whom you wish to see. Marvellous idea, not available where I live.

Chin up - devastation booted up the bum and forward with your life. It may be different but it's there to be lived. If you have questions of any kind, do ask - we've all stood once where you are today. xx

[UnaY66 in reply to Finvola]

Oh thank you I came home from hospital so upset as I adore my fitness but now I just want to lock myself away and I am due back at work on Fri and just not ready to go back yet thanx Una

[Finvola in reply to UnaY66]

Una - you have been through a great deal of trauma with bereavement and now this diagnosis. Give yourself time and space and try to think positively - very difficult at the beginning.

If you ever go back to Dublin, one of the top EP's is there - Dr Keane. My EP in Belfast used to work with him.

[UnaY66 in reply to Finvola]

I do have a place in Dublin Rathfarnham I do need to see someone soon how long I have to wait for Freeman could be about a month x

[Ianp66 in reply to UnaY66]

I felt the same Una when it first happened a couple of years ago, loss of my mother and a divorce with all the stresses I think was thr trigger, and usually a couple of glasses of wine triggered mine every time until I was correctly diagnosed with AF, not "holiday heart" as the first doctor flippantly branded it . I'm the same age 51 and know the feeling of being devastated but it really isn't as bad as it will feel in your own mind, it is manageable . Any consolation it scared me and still does to a degree, though I have flecanide which is pill in pocket so that when it occurs this seems to stop it quite quickly even though it makes me feel like crap for a day . This forum has loads of support and people going through same thing and loads of help and comfort can be found here. Talking and speaking to others in the same boat definitely helps, keep strong and don't think of it as an end, simply something you have to adapt to and dint let it get you down . Ian x

[UnaY66 in reply to Ianp66]

Thanks I will feel better when I get to see heart people at Freeman I left hosp with Beta blockers my body is use to so much exercise now I am terrified to return to work plus we decided to sell house since he died it had just sold and lot be out by Oct 23 so looking for a new home but my mind and body come to a halt with this AF I thought I had integestion when attacks came as I am so fit I have gone in to shock

[Ianp66 in reply to UnaY66]

I know how you feel Una , I saw Dr Burke three years ago when it all started, he did say technology had a long way to go as i was considering ablation and couldn't guarantee it would cure it and can make it worse which is a risk i want willing to take , from what I read and I've looked Into its a long recovery road and being self employed not something as yet I'm prepared to risk. I do keep very calm about it all now it's very hard I must admit but that's key, keep calm and try relax best you can , I'm actually off work this morning as it's started jumping about at three this morning again lol , an hour more and il have to take the flecanide, it's not an easy thing to cope with but as other will tell you not as bad a lot as some, please try relaxing, watch a movie, be kind to you yourself. My house move at that time and other stuff used to play havoc with it, as they are major life events it's hard to be calm I know, but it does settle as life settles down i promise you.

[UnaY66 in reply to Ianp66]

Hi y - hope u are doing ok I am finally got an appt with heart people at Carlisle for a heart scan I still havnt gone back to teaching dance classes too scared but I have found a new home and we are starting our move next week my scan is on Thurs 19 at 11 xx

[Ianp66 in reply to UnaY66]

Light at the end of the tunnel Una, that's great on both counts,hopefully the specialist can make life a bit easier or suggest some treatment. Hope the move goes smooth and don't get to stressed, easier said than done I know but your making progress with both, all good 👍

[UnaY66 in reply to Ianp66]

Your a cool person Ian thank u for helping through an awful time x

[Ianp66 in reply to UnaY66]

Glad to help Una 👍, been there myself and it's awful on first event and diagnosis, but honestly now isn't such a big deal, if listening and putting any reassurance your way helps make it a little easier on your mind am happy to share my own experience of Afib and how Ive coped, and personally think your doing fantastic as it can scare the crap out of anyone when it does start, so here if ya need download as I know it does help when others understand what your going through 👍

[UnaY66 in reply to Ianp66]

Hi again we have at last moved it was v stressful but it's a new beginning I need your advise again I booked in for the flu jab as I work with A lot of people just wondering will it do me good ? or set heart off on a race I had my scan a week now no news of results yet the lady doing scan said this looks normal but await for Doctor - hope u are well thanks Una x

[Ianp66 in reply to UnaY66]

Hi Una, I had my jab about three weeks ago and all good no probs with it ,I have it every year tbh as I deal with quite a few customers etc like you . Not heard anything contradictory about the jab off any off anyone else, and it's worth having in my opinion as a bad bout of flu can make you run down, and poses a higher risk I'd say. Hope it's better with the move over bet that's a huge weight off you now, gonna be loads better now you can settle in your new home. Wow that sounds great about the tests, I'd take that as a massive boost and relax if you can as the more chilled I am the better the ticker behaves itself, been taking the magnesium and taurate religiously and touch wood no skips so far, so when did they say you were getting an appt to discuss the results, was it Newcastle you went to? Ian x

[UnaY66 in reply to Ianp66]

Yes AF is treated in freemans not sure if you know the lake district at all Carlisle deals with scans but Freemans decide what's to happen I havnt returned to aerobics yet but doing loads of walking I eat foods that contain magnesium I do feel loads better I didn't realise how poorly I became with stress eating wrong stuff just hope i will return to my normal life one day x

[Ianp66 in reply to UnaY66]

Yes know the lakes well, hopefully you can get over the worst soon, once my life settled with my move 5 years ago and I stopped stressing over the business and things that didn't matter I've been loads better, I saw DR Burke at freeman's 4 yrs ago and decided against any op unless it totally disrupts my life tbh, and made adjustment to lifestyle and diet more than anything x

[UnaY66]

Be fab - i am from Dublin but I live in Keswick Cumbria now x

[CaroleF]

Diagnosis is a dreadful shock at first. I think everyone here understands that, though as a fitness instructor I think it must be particularly unsettling/upsetting. However there *is* light at the end of the tunnel as many here will also testify.

I, too, was taking 2.5 bisoprolol and felt like a zombie to such an extent that I persuaded the GP to let me stop taking it since I hadn't had an AF episode for 6 months. It was only when I then (a few months later) had an episode landing me in A&E that I was convinced that I really ought to take it again. However *this* time the GP agreed that I might take 1.25 twice a day. It was an idea I picked up on this Forum. I must say that the side effects aren't so bad doing that and the AF seems to be under control too. Maybe you could ask your GP about doing that?

If the fitness classes (I assume high-cardio type of thing?) do prove too much for you to cope with maybe you could retrain to teach tai chi, or pilates or yoga?

As my Mum would have said, "Chin up!"

Edited to say: You mention an episode after drinking wine ...... alcohol seems to be a trigger for AF for many people so it'd be wise to avoid it in your case. [Happily one small glass of red wine most evenings doesn't seem to affect me :-)]

[UnaY66 in reply to CaroleF]

Thank you I might ask to half it as I feel wiped out with 2.5 - Una

[CaroleF in reply to UnaY66]

I think cardiologists describe 2.5mg as a 'baby dose'. It may well be that (given that I think some people take 10mg), but I rather think that they have not, themselves, experienced the side effects that many of us endure. They might see things differently if they 'walked in our shoes'!

However, I haven't actually halved the dose so much as split it into two separate doses* - one taken in the morning and the other at night. So I still take 2.5mg in total per day. The side effects (especially the wiped out feeling) are now nowhere near as bad. I'd ask about doing that if I were you. Or, depending on your own particular situation, it might well be that a 1.25mg dose a day would keep your heart rate under control. The other thing you might try is taking whatever dose the medics consider applicable in the evening instead of the morning. Some here have said that that modifies the side effects.

*1.25mg tablets are available. I used a pill splitter from the pharmacy until I'd finished the 2.5mg ones initially prescribed.

Hope you get something that suits you better sorted out as I know how you feel right now.

Carole

[Sam72-]

Hi una, I no it is a shock as I was diagnosed a year in November 2016. I was 44 years old . Going from my experience and only mine , I would say you need to see an EP as soon as possible. Have you been told what type of AF you have ? As there are different types. I have a fast PAF (stops and starts). Also the reason why I am saying this is because my cardiologist said he would of liked to have seen me in AFib at least twice a month before he even offered me a procedure called ablation, thank god I didn't take his advice. However I said I wanted to see the EP as soon as possible and so glad I did . As I got told that it's more treatable with an ablation procedure in its early stages than when it's getting into permanent AF. And one thing I would advise to you ! Have an EP study done , as I had SVT as well as AFib and did not no though I had them symptoms since I was younger and told it was anxiety!! It wasn't a shock to no I had it . Good news is your young and fit so grasp that as some of these fabulous people on this forum have had more medication and ablation procedures at an older age and are so brave and are my heroes. Also do your research on EPs , and hospitals, this is so important . The meds can make you slow down but that is a low dose your on at the moment. You need time to take it all in and then see what options you have to go for . I went for the ablation and had it done 2 weeks ago . It was an easy choice for me but with a lot of anxiety, but the people on this forum have helped me through it from day 1 of me arriving here . If you want to ask any questions about anything I am here 😊💗

Best wishes to you

Sam X

[paddygal]

Hi, welcome to AF association.

I have been diagnosed with paroxysmal AF quite recently. I was devastated, and sometimes still feel lost and forgotten.

You will find your way through the maze of information and treatments, find a way that you can live with AF.

I have good and bad days, more good than not.

I have tailored my medications to suit my lifestyle, taking bisoprolol at night rather than the morning. Which has helped that exhaustion.

Keeping hydrated and eating smaller meals has helped too.

Use this site for tips and answers, its a great place to meet others in our position, and everyone has a story that we can relate to.

Chin up. xx

[dabend36]

Hi Una, I am sorry to welcome you to the AFIB club. But I think it is very important that you understand that while all this advice is valid, everyone is different. For some, AF is triggered by alcohol. For others it is not. Some can't have caffeine. Others can. Some are on Flec and they feel tired. Some are on Flec and they don't. You have to figure out how your body reacts to AF and the drugs and then proceed accordingly.

As for the prognosis, it is pretty much the same. Everyone is different. I was diagnosed last December with persistent AFIB. (I am 59, m) My first cardioversion only worked for a few days. I had another 2 weeks later and was put on Flecainide. OVer the next few months i would go into AFIB for a few minutes every week or two. My cardiologist recommended Ablation. I had my ablation at the end of July. Since then I haven't had a single ectopic. After a month, my EP told me I had no restrictions. None. He suggested that I avoid maximum heart rate workouts because he didn't believe they were any better than target heart rate workouts. But he said nothing bad would happen if I did them.

I currently work out 4-5 days a week doing both cardio and weights. At least once a week I do a bootcamp like class that gets my heart to 150-160. I have 5 or 6 beers a week. And one cup of caffeinated coffee per day (same as I always have). I am on Flec as a precaution for two more weeks. Will stay on Xarelto for another 6 months. Best of all, I feel so much better than I felt before. Much more energy overall.

I, too, was worried that I would never be able to work out again. But I am doing all the same things I was doing before. I know I am lucky. I do not think my situation has anything to do with anything I have done. It is just the fickle nature of AFIB. And perhaps having a great EP. Although I know people who got the same ablation procedure from the same EP who have not had the recovery I have. And I also know that I am still not out of the woods. It could come back at any time.

So just remember, AFIB is different for everyone. Try to figure out what triggers it for you and avoid those things. But don't avoid things that don't trigger it.

Good luck!

David

[UnaY66 in reply to dabend36]

Thank you David great news that you can work out I hope I can get back to myself soon defiantly wine was a trigger for me

[Sam72- in reply to dabend36]

Hi David , I have just came across your post , can I ask what flec is ? You say you haven't had 1 ectopic beat since your ablation procedure? That's outstanding, I am on bisoprolol 10mg but never taken any other drug except warfarin. I had my ablation 2 weeks ago and am getting a lot of ectopic heart beats coming on and off , just wondering what type of ablation procedure you had and who was your EP in what hospital? Sorry for all the questions, as I am very interested with how fast you have bounced back . I was 45 August 17th and I don't feel as good as you do . I no we are all different but it's very interesting to see how well you are doing . I have seen a lot of people take the flec but I am not sure what kind of drug it is ? Sorry for all the questions about it 🙄 just any information is good to hear especially with such a positive feedback from your ablation procedure, that's brilliant news 😊 on wards and upwards ❤️👍🏼

[dabend36 in reply to Sam72-]

Hey Sam, again, I want to reiterate that I take no credit for my recovery. Just as I felt unlucky to get AFIB, I feel lucky that the ablation has worked (so far). That said, I like to think that being in good physical condition has enabled me to bounce back faster. But I don't think it has anything to do with the apparent success of the ablation.

I am also not sure why my EP has given me no restrictions. Everything I had read prior to the procedure gave me the impression that I would be put on a short leash for a long time in terms of working out, diet etc. All I can assume is that they do not think being active/working out will affect the long term results.

Flec is Flecainide, an antiarrhythmic medication. I am also on Diltiazem which is pretty much does the same thing in a different way. Not sure how long I will be on that. Who knows what will happen when I come off that. My layman's opinion is that they keep you on these drugs to prevent the heart from trying to override the procedure when it is still recovering. My ablation was heat, not cryo. My procedure was at Massachusetts General Hospital. EP is Mansour.

Good luck with your recovery. They say ectopics are very normal even when the procedure is successful so hang in there.

d

[Sam72- in reply to dabend36]

Aww ok , I think I understand you now about the meds . Yes I stoped my beater blocker for 5 days before my procedure and the first 2 days I felt so weird and shaky but the last 3 days I felt fine , in fact I felt better than on them lol . You have probably seen my posts as I had cryoablation and also an RF. Ablation for SVT as well on the same day . So my right and left atriums have took a kicking . I will try ride it out as I don't really want to add anymore anti arrhythmia drugs to the cocktail . Thank you for your feedback it helps a lot 😊.

Wishing you all the best for your fantastic progress 👍🏼❤️

[Sportfix]

Hi & welcome UnaY66, I have been doing gym excercise, aerobics, cycling, swimming & pilates for the last 30 years. I thrive on exercise, but last September I lay down in bed after a late night & felt this strange thumping in the side of my left ribcage. Happened every night on lying down to sleep. After an ecg it was apparent I had a fast heartrate & I felt depressed & devastated. Saw an Electrocardiologist who prescribed Bisoprolol & riveroxaban. Had an ablation, right side, last September which he said had cured part of the flutters but at the same time 3 more arrythmias had started. He added Flecainide to my list of tablets & after a cardioversion a few months later all seemed better. However, I've now slipped out of "sinus mode" again & I'm going to have a mapping ablation on my left side quite soon. My bloodpressure's fine, no high cholesterol, very slight valve leakage but nothing significant. Electrocardiologist says there is a 70 percent chance he can cure me so I'm hoping for the best. Would be great to be medication free, except for Riveroxaban. I hope you get sorted very soon. Tell us how it all goes. Jane

[Ianp66]

Durham Una , near the centre just a couple of miles out, came back around 12 years ago, lived in Leeds for about 14 years but nothing like home I suppose x