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Cavalierrubie profile image
76 Replies

Hello everyone. My name is Christine and I am 71 years of age. I have been reading all your helpful posts, thank you. I was diagnosed with PAF at the end of May. From than on its been like an ongoing nightmare. I have gone from an active lady to an anxious wreck. I have had my drugs changed twice. They are like poisen to me. They are now trying me with Apixaban 5mg twice daily ansd Digoxin 62.5 microgs. per day. I have now taken this for 2 days. Its early days but I still feel giddy, light-headed and unreal. I have lost my motivation. I drive but have lost my confidence. I feel I will never be the same again and I am very down. Can someone give me advice? or hope? I would be very grateful.

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Cavalierrubie
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76 Replies

Welcome. You just have to persevere I’m afraid. I am 75 and have changed tablets many times until I have found the ones that suit me.

You will get there. I still play an active role in family life.

Di

Cavalierrubie profile image
Cavalierrubie in reply to

Thank you Hylda for your help today. Its a great relief knowing that I can get back to normal eventually. You all have so much experience of this horrible thing. Thank goodness you take the time to help. Thank you so much.

in reply to Cavalierrubie

I have had so much help so it’s only fair to pass it on.

Di

Finvola profile image
Finvola

Hello Cavalierrubie and welcome to the forum.

You have exactly described me at diagnosis 6 years ago at the age of 69. I couldn't believe what was happening to my carefree, wonderful life and thought I would never be right again. Anxiety was off the chart and my heart was so unpredictable that I wouldn't go out, scared to drive the car, etc, etc. So, I feel for you - but - things do get better - honestly.

You can do many things to help - read about the condition so that you have knowledge and understanding of what AF is and how it might affect you - remember not all symptoms apply to all people. The main AFA website is your best starting point heartrhythmalliance.org/AFA

Try not to worry - so easy to say and write but needs an awful lot of work and effort as AF causes worry and worry helps AF. I find breathing exercises do help as does mindfulness meditation and absolutely anything which helps to calm the natural concerns we all have about our health.

You will get your life back on track - you will need to take account of different things but the condition will get put in its proper place - at the back of your mind. Drugs do take a while, first of all to get the correct ones, in the right doses and your body needs to adjust to them. Give yourself time, don't blame yourself for feeling slightly overwhelmed - diagnosis is a kick in the teeth but all of us on here have been through what you are experiencing now.

Any questions, thoughts or problems - just ask, someone will always be around.

Cavalierrubie profile image
Cavalierrubie in reply to Finvola

Thank you so much for your help. In think with all you lovely people on here it will help me so much. I wish you peace and happiness.

Jjda profile image
Jjda

Welcome Christine, and do not feel alone. Many of us have been exactly where you are right now. I was diagnosed last June at the age of 66, and it made me suddenly feel old and tired. Part of that was the medication, and part was just the thought that my life would never be the same. But it can be just as good, or better! Go easy on yourself and do everything you can to stay active. You may need to change lifelong habits, but it can be done. I agree with Finvola, mindfullnes training is a good place to start to get a handle on your anxiety, along with learning whatever you can about the condition. Stay in close contact with your doctors regarding your medications and let them know if they are not helping, or if you have side effects that are making you sick. Do you have an Electrophysiologist (EP)? If not, see if your cardiologist will refer you to one. They have more training in the field of arrhythmias. And check in on this site often. There is alot of support and information here. It will get better.

Cavalierrubie profile image
Cavalierrubie in reply to Jjda

Thank you for your reply. I have outpatients appointment but not until 5th August so I will ask. I have been back and forth to hospital as drugs make me so ill and they consult an Arrythmia Nurse for my meds. (think thats how you spell it) Like yourself I suddenly feel old but, if you all on here came through the other side, then you have given me hope. I know its early days for me. I am still in shock and have to accept this horrible thing. I have always been anxious and highly strung so my poor old heart must be tired of me! Thank you all so much for being there. This is a wonderful forum.

Aprilbday profile image
Aprilbday

Hi Christine,

It takes time and a new tolerance to adjust to the meds. Don’t worry about it too much. Your confidence will adjust to a new reality of what your ability is. We are all just going through this life and there will always be changes. You will be ok.

We are all in the same boat dealing with what life throws at us. Keep a sense of humor and welcome to the group. 😊

Aprilbday profile image
Aprilbday in reply to Aprilbday

I do have to add that I was a complete mess until my doctors worked together to get me on Zoloft (Setraline) and the right dosage. I also have Xanax as needed but a bottle of 30 that last me about 5 months.

Cavalierrubie profile image
Cavalierrubie in reply to Aprilbday

Thanks and bless you for all you have said. Its been a lovely warm welcome from you all. Best wishes - will be back.

Cavalierrubie profile image
Cavalierrubie

Thanks for advice. Will find out about various treatments when I have my first appointment with Cardiologist. It sounds much better than all these drugs. Take care and thanks again.

Paulbounce profile image
Paulbounce

Hi Cav.

Finvola wrote

.......You will get your life back on track - you will need to take account of different things but the condition will get put in its proper place......

I agree 100%. It takes a little time to adjust to being told you have afib - if it was in May you are a newbie ;-) The anxiety is a part of it - it passes. You`ll get your confidence back soon enough. Bet I`m right ;-)

Regarding med`s. They can take a while for your body to get used to them. I think in some cases you may feel a bit rotten but it can settle down. Speak to your doc about any concerns you are having.

Enjoy your day.

Best,

Paul

Cavalierrubie profile image
Cavalierrubie in reply to Paulbounce

Thank you Paul. Everyone has been so supportive and helped me today. I feel much better knowing I am NOT passed my sell by date! and that things will get better. Its a terrible experience when it first happens, and I just froze mentally, and one of the meds they gave me I was paranoid. Absolutley terrible never known anything to compare and I have had lots of trouble in my life. All the best to you and thanks.

I am 66, diagnosed 3 1/2 yr ago, the first 4 months were awful trying to get meds right. Finally saw an EP who straightened me out and life got better. Anxiety was the hardest to deal with, not knowing if or when a fib was going to strike. I learned relaxation and breathing techniques that helped. Im on zoloft for depression/ anxiety, but was battling depression before a fib. Now, I havent had an episode if a fib in about 14 mo I think, I almost forget I have PAF! Im sure it will raise its ugly head again but I am thankful Im not afraid of it anymore. It has gone from scary monster to just annoying. You must be hopeful that you too will get your life back, it might take some time but it wont always be this way.

Cavalierrubie profile image
Cavalierrubie

Thank you Hoski for your words of encourgement. I have been so scared over past few weeks. Thank God I have found some friends like you. You have helped me be positive today, and given me hope to go forwards with this nightmare illness. Bless you and wishing you keep well from this.

in reply to Cavalierrubie

Thankyou! Im going to have a knee replacement in sept, so I will be crying out for support then, lol. Just keep hope and dont give in to the disease.

Love100cats profile image
Love100cats

I was terrified when told I had heart failure. Because I'd lost some members of my family to h.f. and my husband developed it post h.a. I thought my life was ending. I'm 77. But I had so much help from the Arrhythmia nurses then the heart failure nurses and this site I started to make sense and understand my condition. The tablets were awful to start with but I have adjusted to them and they do the job. I've been discharged from hospital appointments but can contact them when needed and comments on this site are amazing. So think positive! ☀️

Cavalierrubie profile image
Cavalierrubie in reply to Love100cats

Thank you for your message. I am 3 days into different meds. and feel very off and giddy this morning. How long does it take for the body to adjust? How long should I give it do you think? Thank you for your help.

Love100cats profile image
Love100cats in reply to Cavalierrubie

I've posted my reply to myself. I hope you got it.🙃

Love100cats profile image
Love100cats in reply to Love100cats

It took me a few months but it was gradual. At the start our home help would arrive to find me fast asleep in the chair at 10 a.m.! Now I sometimes have a doze after lunch but not every day. I no longer feel unsteady when I walk and the nausea I suffered is not so bad. Some of it is to do with being so grateful for the meds I have that keep my heart working. It feels like a miracle! The experience makes me so aware of things maybe I didn't appreciate because I didn't give myself time. Now I can sit and study my flowers and watch the birds.🤗

Cavalierrubie profile image
Cavalierrubie in reply to Love100cats

thanks for reply will keep going on.

Bagrat profile image
Bagrat

Welcome. I am 75 diagnosed 2011 with patoxysmal AF. I was prior to that having increasing anxiety and panic attacks and oddly it was a relief to get a diagnosis with a physical cause ( even if electrical!). It pushed me to seek help for my anxiety and panic, for me talking not pills and the new me is coping well. Concentrating on breathing (there are lots of patterns in for 7 out for eleven works for me)

Adapting to changed circumstances always hard. Once you establish what is normal for you things will get easier because we're all so different.

Sending good wishes.

Cavalierrubie profile image
Cavalierrubie in reply to Bagrat

Thank you for your welcome and good wishes. I have had panic attacks in the past so I know how terrible they are, well I think they are evil! I have now had two again since this AF diagnosis. It is all overwhelming and upsetting and takes courage to endure. I wish you well with the new you. Wishing you peace.

Bagrat profile image
Bagrat in reply to Cavalierrubie

Do have a look at Human Givens website. Very help ful and I had only three counselling sessions and was so much calmer. I'm still an anxious soul but on my terms now!! Good luck.

Morzine profile image
Morzine

Awe poor you.....we all know exactly how you feel because we all have been the same........I was last May.....like you it turned my life upside down.....it’s quite overwhelming....you tick along in normal life and whoosh it’s like you’ve been s

Whisked off to an alien planet....you feel dreadful and the future looks bleak...very bleak as everything you used to do seems taken away it’s like a bearevement....my confidence went to nil....scared to drive........but and it’s a good “but” 😁 after a while it will get brighter......trust us all when we tell you “ it ain’t as bad as it seems now”.

This lovely band of people helped me thru my dark days.....I thought my life was over, well the normal life I had before this beast came.....but as the tablets settle in so you get your life back......it takes a while to get the right tablets sorted, but not too long......they need to settle in.....the apixaban I don’t think gives any problems to most of us.....its Essential to keep the blood clot free, it’s an anticoagulant ....it’s our little safety helper from strokes....I have read in here others have taken a while to find the right combination with drugs ...mine made me feel dizzy, tired, blurred visual problems, no appetite, and no energy....it was so scary and upsetting.....I had many a tear.....they all settled down as the drugs settled with me, but it wasn’t straight away...it was couple of months, .....you have to give them a go, and if you aren’t right go back......you’re very early days.

The main thing is try not to worry...easier saud than dine, as I know with me it was in my mind from the moment I woke up!......there’s light and normality at end of tunnel, I know it doesn’t seem like it now, once you get the tablets settled in or changed to others to suit you...you will get the pattern of life back.....mine started last May on holiday and I thought I’d never go on holiday again.....I do now...........first time we went in a restaurant I fekt an uneasy panic inside me the whole time......now I’m fine.....the confidence does come back, you’ve had a huge knock. I know it doesn’t seem like it now but there will be a time that you will not think about this endlessly...you will wake up and it won’t be the first thing on your mind....you will get up and do normal life stuff.

Also it’s early days, but you can have an ablation down the road......

But for now let your body rest when it needs, don’t push yourself.

Sue

Cavalierrubie profile image
Cavalierrubie in reply to Morzine

Thank you Morzine I really needed your message this morning. What you said is what I could write down now. Thats how I feel. Thank you for reassuring me that things will change in time. Thank you for taking the time to care. God Bless.

Gilli54 profile image
Gilli54

Hi Christine. Welcome to the forum. I recognise your emotions and feelings so well. Other members have put it into words that make sense to all of us with AF. Loss of confidence is a biggy, but it does get better. Baby steps. And meds settle over time. But those giddy spells are truly horrid. Don’t give up. Share your feelings with trusted friends so they can support you if you are out and about and don’t feel too good. It truly does get better. Hang in there and don’t despair. 💕

Cavalierrubie profile image
Cavalierrubie in reply to Gilli54

THANK YOU SO MUCH FOR YOUR ENCOURGEMENT

concup profile image
concup

Sounds like life is a worry for you right now!

Firstly you need to understand that what you are feeling is a perfectly normal reaction to a huge change in your "normal" life and you are most probably now in an anxiety state, very confronting and certainly frightening, and unfortunately many Afibbers have been through this, in fact it appears some still are!

Next you need to understand that Afib itself wont kill you, certainly not any time soon, but it always best to get everything checked out, if for nothing else for your own peace of mind.

Good to see so many people recommending deep breathing and relaxation exercises, because believe me, from someone who has had this "beast" for over 25 years including the last few years in persistent/permanent Afib, these exercises are "gold standard" very best self taught treatment...it really works, but don't expect overnight success, it takes patience and perseverance, but if you are determined, you will succeed. Just accept that it takes time to adjust.

Sounds weird really there you are with your heart pounding like its going to explode, or burst out of your chest, and you have people telling you to sit down and relax...but it is a huge help with the thing that's making things feel so bad...and that's ANXIETY!!!

Sure its not a cure, but trust me, it makes life much, much better.

If you find these recommendations impossible,You might want to talk to your GP about a short course of tranquilizers, but understand they are only a crutch and can be very addictive, so if you do, you need to trust yourself, but sometimes they can be useful to help you settle down until you learn to help yourself.

I too, was very dizzy in the first few months after diagnosis and, in my case it gradually subsided over 4 - 5 months.

I take Apixaban 5mg and Flecainide 50mg both twice daily and have not had another significant event since starting treatment. I just get occasional ectopics (skipped beats), short runs of fast heart beat (SVT), latter seen on a 7 day monitor, but not noticed by me, and a couple of short fast AF episodes lasting only 30 mins and controlled by deep breathing.

I’m 65, was diagnosed last July, felt horribly anxious and dizzy, had to change meds from rate control (Bisoprolol), to rhythm control (Flecainide), but now life is good.

All the best to you

Pat x

Talika profile image
Talika

False hope... many people including me, had Three or more oblation’s with very little result… There is a lot more involved than that

siouxbee19 profile image
siouxbee19

Welcome! I will repeat what others have already posted...give yourself time, especially to adjust to meds. I had a bad time for a while, till I got the dosage right, now I always say I'll never quit taking them because I feel so much better.

Be kind to yourself, treat yourself well, rest when you need to, realize this new "normal" will get better, that you're not alone, keep the ever important humor, and keep the faith, whatever your beliefs!

Wishing you wellness! 😀

Cavalierrubie profile image
Cavalierrubie in reply to siouxbee19

Thanks you are all great on here. Yeah Jesus led me to you.

siouxbee19 profile image
siouxbee19 in reply to Cavalierrubie

Awww, I really love that & I do believe! Bless you!

Cavalierrubie profile image
Cavalierrubie in reply to siouxbee19

XXX

Tux18 profile image
Tux18

Like you I’m so thank for these posts. I’m 74 and have tried 2-3 different drugs to help with afib for whatever reason they made me feel horrible. After having a cardioversion I was put on medication to keep me in rhythm. It took me a couple of weeks to realize it was not the results of the cardioversion that was causing myweakness and miserable feeling it was the medication they gave me afterwards. I would agree with another post that says keep trying other medicines . Is your a fib constant? For whatever reason my body does not tolerate the medications for arrhythmias. But that’s just me other certainly have been helped by it.

It was very scary for me after having episodes of a fib and just knowing that something was wrong with my heart was very nerve wrecking. And of course that only makes it much worse. Anything you can do to relax, stay calm and receive some support will help.

allserene profile image
allserene

Hi Christine...I am 71 too and had my first 'do' in April. I went through exactly the same anxiety process as you.. I started Eliquis (Apixaban) and I am doing well on it; however the beta blocker (metopropol) at 50 mg (twice daily) turned me into a zonked-out cabbage...or at least an old turnip... I am doing 25mg now and feel great. The anxiety had me buying THREE blood pressure monitors so they could majority vote for accuracy ! The Anti coag is £450 ($640) a month here in Wisconsin ("finest country that ever existed in the history of the world" lol)....but I have found a cheaper source and hope to get off it altogether next month if I haven't relapsed... You will come to terms with the situation and you will relax more as your knowledge of it all increases. Just a matter of getting the right doses of the right medication and now you know about it, it wont kill you... 50 years ago you wouldn't even have known what was happening and you would have thought it was just palpitations, and wouldn't even have gone to the doctor, and it would have killed you. It wont nowadays...... I am in London next week, and driving to Chicago plus doing a transatlantic flight plus 6 hours jet lag, and then driving round the South Coast, will cause me to have plenty of beta blocker packed in my hand luggage... You will settle... Alan

etheral profile image
etheral in reply to allserene

Are you in NSR now?. I went into afib and was placed on Tikosyn (dofetilide) which is not available in the UK but has kept me in NSR for 2 years without side effects. Beta blockers like metoprolol knock me out. Thankful for US medicine.

allserene profile image
allserene in reply to etheral

I am in Wisconsin and in NSR since April. I am not specially impressed with US healthcare and that can only get worse when I finally get my early April bill. I can see $20k 'pending' as at 28 June. They discharged me with Eliquis and beta blockers and no indication of when I should stop them or what dosage adjustments to make... The soonest I can see an EP is 17th July... (early April event) I have 59 years experience of the NHS and UK private healthcare, and 12 years in three US States, and I dont see either system as being outstanding... They do say France is the best with Germany not far behind..

37Polly profile image
37Polly in reply to allserene

Yes I am not thrilled with our “amazing” healthcare system. My only major heath problem at 78 is afib and it’s June and I am in the infamous “donut hole” ...all Americans know that means I am now paying more for prescription drugs...have passed the magic number of having paid thousands of dollars since Jan. 1. And as for our faster access...have just been told I cannot see a neurologist (referred to by my EP) before November. THIS IS JUNE!

Don’t get me started! I would welcome a system that was not focused on billion dollar profits for Insurance companies and big Pharma. That means any other advanced country’s system except ours. Polly

allserene profile image
allserene in reply to 37Polly

I went to the pharmacy for my first Eliquis and was told it was $280 AFTER Medicare insurance. Asked him much without insurance and he said $640. Got mine from the most expensive Canadian online pharmacy and it was $160. Real Bristol Myers Canadian manufacture stuff too. Its still too much and if I am told to do it long term I will go for $6 Warfarin...

37Polly profile image
37Polly in reply to etheral

Dear Etheral, I, too, am on Tikosyn and doing well. None of the rate meds like Metropolol or others helped me and made me feel like a dishrag. May I ask how old you are and what your EP says about how long Tikosyn is likely to work?

I am 78 and otherwise quite healthy and doing well but my EP says if I want an ablation (he isn’t pushing it, but nothing much worked before Tikosyn) I must do this before I am 80. I would like to avoid ablation if I can, as a small older female with aflutter and afib, statistics aren’t great. I am thrilled when I hear others doing well on Tikosyn. Any information would be welcome. Thanks, Polly

And Cavlierrubie, this group has given you the best advice. Proceed with confidence. It will get better and you will be a calm expert on your own health and better than ever. The only folks I see who fail at this are those who pretend it hasn’t happened and don’t make the effort to change what needs changing and learn what works. The docs don’t fix you, they help YOU find what works.😉. Good luck. You will do well.

Cavalierrubie profile image
Cavalierrubie in reply to 37Polly

Yes and we must not put up with meds if they are making us ill. Some people soldier on feeling like nothing - well we have to get life back as much as we can. I have been told there are many drug options. Thanks for encourgement, We need that from each other. Byeeeeee.

etheral profile image
etheral in reply to 37Polly

Hi, I am 68 yo male and went into AFib along with CHF 2 years ago. Tikosyn has kept me in NSR since and the CHF has resolved. My EP says this may work indefinitely and there is no need for an ablation. Crossing my fingers that she is correct and hope you have similar results. Personally I would be reluctant to have the procedure prophylactically. The potential complications and problems that people discuss on this forum certainly help dissuade me. Guess there are no guarantees either way .

37Polly profile image
37Polly in reply to etheral

Thanks etheral for your response. You confirm my hopes. My EP has a patient who has been on Tikosyn, successfully for over 12 years now. If I can do anywhere as well as I have his past year, I will not risk an ablation. It has taken over a year to regain much of what I lost in endurance and stamina. Still get tired sooner than I’d like but I now feel almost normal and am still trying to do more each day. Good luck to you. You add good numbers to may data.😊

Cavalierrubie profile image
Cavalierrubie in reply to allserene

Hello Alan thank for your encourgement and taking time to speak to me. I am sure I will make it, and feel more confident everyday. Its a case of correct meds. Everyone has been brilliant. Have a lovely stay in London and enjoy holiday. Christine.

Cavalierrubie profile image
Cavalierrubie in reply to allserene

Hope you got reply my computer gone crazy today.

allserene profile image
allserene in reply to Cavalierrubie

Yes I am in a mid-west thunderstorm that would put Noah in a flutter. At least if I get a flutter while I'm in London and I can't control it with betas, I can go to emergency for free... I would go out to the leafy suburbs in Surrey rather than an inner city hospital. I know the ropes in the UK and after doing a walk-in at emergency in Leeds. I walked out and drove 20 minutes to Harrogate. "Good afternoon, please take seat, (Leather recliners), I will bring you a coffee and some biscuits and then I will bring a doctor over to you".... Emergency room in rich areas is a different world, and I m told it's the same in the US where inner city ERs are full of gunshot wounds etc......

Cavalierrubie profile image
Cavalierrubie in reply to allserene

You will be OK. We look after you here - only problem now is you have to wait and wait and wait............ Took me all day to get meds changed, but we are a GREAT country. All the best.

allserene profile image
allserene in reply to Cavalierrubie

Yes the UK NHS moves fast when it has to... My 95 year old mother got her hysterectomy in Leeds at 2 days wait and it was great job and 100% free of course.. My American wife had been told that people in the UK over age 55 are sent home with 2 aspirin by the socialist government death panel ! She believes me now, but nobody else does coz this talk has been drilled in over their life times...

Hilly22 profile image
Hilly22 in reply to allserene

Good morning allserene, do excuse my belated response. So true what you say about the difference in hospitals ... this is why we don't ever want to move away from Harrogate 😊

allserene profile image
allserene in reply to Hilly22

My best pal lives in the Prince of Wales Mansions in Harrogate (thinks he is posh but talks Barnsley lol)...and my other pal lives up by the A59 in Harrogate.... No 1 pal just got new heart valves and is doing great... I live out in the sticks here in Wisconsin but they are bussing all the crazy bag ladies and wounded gang members out here from the inner city hospitals which are overflowing..... I couldn't sleep at all with all the bellowing and raging and nuttyness...

Hilly22 profile image
Hilly22 in reply to allserene

It’s a small world allserene. I probably wouldn’t know your Barnsley friend as I’m Surrey posh lol. Really though, the poshness is a bit of a joke and I prefer the friendliness of Ripon and the less posh parts of Harrogate.

My husband and I both worked at Harrogate hospital - he was a physician there for decades so I can truly vouch for it.

Do get in touch with us next time you visit your friends - sounds like we could have a good laugh 😂

Lewis1234 profile image
Lewis1234

Hi, as well as finding meds that work for you, you could look at any diet, supplement and lifestyle changes that might help. Their are many discussions on here about all that. It would be great if you could find something that is triggering the AF. Some have managed to reduce the frequency of their AF episodes and others becoming AF free for years. The obvious ones to consider are alcohol, caffeine, gluten, wheat, processed foods and other more tricky ones such as Tyramine. It seems more successful with people who have Vagul AF like me (richardbogle.com/blog/vagal.... I was having at least 1 fast PAF episode a week lasting 5-15 hours, since giving up gluten I have not had an episode for 5 weeks so far... nothing conclusive yet...

Cavalierrubie profile image
Cavalierrubie in reply to Lewis1234

Thanks for tips. I think mine is caused by stress. Also large meals. I have hiatus hernia and excess burping can upset vagus nerve. This is my own conclusion. If I have a stressful event it starts up because by pulse quickens. I am anxious person. Thanks and good wishes.

Snnapdragon123 profile image
Snnapdragon123

Hello there..l am also 71 and the same as you. I feel like

I don't know myself anymore. Hope eventually that my

meds. will settle down. Can only go with the flow.

Sympathies. Snapdragon123.

Cavalierrubie profile image
Cavalierrubie in reply to Snnapdragon123

Hope you feel better soon. The mornings are worst time for me. These new meds they have given me seem bit better so far as I am not paranoid, and lightheadedness is better but still wobbly at times. It is very upsetting as suddenly your whole life changes, but it could be worse. At least we can be treated, so I am thankful for that. We are not alone in this. We are here to help and love each other. Get well soon. Christine.

Nanopiano profile image
Nanopiano

Ablations are fine for some people, but shouldn't be recommended as "100%" cure. I had two with no success. The only thing that has worked (so far) is the Maze procedure. In the meantime, Cavalierrubie, fear not...something is out there that will make you feel better.

Talika profile image
Talika

The first one left me much much worse – I had to take six months off work and be virtually housebound while I waited for six months out for them to do a second one which also did not work – but left me a bit better off than the mess the first one made .

After a few years I was encouraged to get a third one as technology had improved however not enough to make a difference

cuore profile image
cuore in reply to Talika

Were you in persistent AF when you had your ablations? The duration of the AF if it is persistent will greatly determine how successful the ablation will be. I was 6 months persistent for the first one, so I have had to have another two,

Talika profile image
Talika in reply to cuore

No, not persistent AF when I had the first one but much more frequent AF after I had the first one

DawnTX profile image
DawnTX in reply to Talika

My first one lasted six months, but it was a good six months almost immediately after having it that was a cryo-. I needed a second six months later. I had an implant loop recorder, and my doctor had gotten a report. I needed an ablation ASAP because of the number of events I was having hourly. That lasted a year. It was an RF and again I guess I took it for granted because I felt normal, except for palpitations off and on but they weren’t that bad. Then I moved and had a relatively famous pioneer of his own procedure do my third. From then on it was a nightmare, and for six months after I had tachycardia and more and lost my ability to walk among other things with crushing chest pain, along with it, my fault for waiting so long, but being new to the area and finding it hard to believe a well-known EP, like I had had failed me, and then some was hard to take. Thankfully, I ended up with an amazing young and humble doctor, who saved my life. He would not continue doing procedures that did not work. Plus, I was badly scarred from the last ablation. To wrap it up quickly, I now have a pacemaker made for me. It’s not the pacemaker device, but the wiring when there was nothing for me at the time my doctor created what I have now. So never say never, and don’t give up the more you read here the more you will see, we all have our own stories. A fib is a monster.

Cavalierrubie profile image
Cavalierrubie in reply to DawnTX

Sorry, l am not sure why you have replied to this as l posted 4 years ago. I have now had AF for 5 years. I think there has been some kind of error. Thanks very much.

DawnTX profile image
DawnTX in reply to Cavalierrubie

obviously, I did not see you when it was posted

Cavalierrubie profile image
Cavalierrubie in reply to DawnTX

That’s ok. These things happen. Stay well. 🥰

DawnTX profile image
DawnTX in reply to Cavalierrubie

You as well. I’m not sure why so much of my feed is filled with very old posts.

Cavalierrubie profile image
Cavalierrubie in reply to DawnTX

I don’t know what has happened but it sounds like an internal error. I expect it will right itself eventually. Anyway, it was very kind of you to take the time and help me. It was a nightmare when l was first diagnosed and your post would have been very needed. Take care 🥰

DawnTX profile image
DawnTX in reply to Cavalierrubie

thank you for being so nice. It was the people on here that helped me and are still helping me. The best thing we can do is pay it forward.

Talika profile image
Talika

Higher heart rate yes but much more frequent episodes was the main issue more in AF then sinus

Jennifer53 profile image
Jennifer53

Welcome Christine,

I feel for you. I discovered I had AF after I had a stroke at 51. Turns out I had PAF since my teen years. I didnt know it was a problem and no doctor had picked it up. Now Im on Warfarin I have ceased to worry about it. Its a part of me. It comes and goes but my blood does not have the capacity to form clots in the way it did so I have decided to live my life in the way of my choosing. This fear will pass and you will become accustomed to your new meds eventually and if not the doctor will help you find what works for you. Good luck.

Cavalierrubie profile image
Cavalierrubie

Jennifer you are so brave. Thank you for those words, and helping me. Life throws some awful things at you, but by the grace of God we battle on, and you are an inspiration to others. I wish you well and lots of happiness. Christine.

Oldiemoldy profile image
Oldiemoldy

Hello and welcome. I'm 73, diagnosed with Afib in 2017 but it really did not bother me much. I took the anticoagulant and went on as usual after a mountain of tests didn't show anything too alarming. Blew off gentle suggestions to lose weight and stop drinking like a 35 year old.

Then I started having attacks in late 2018 and my EP said I was a good candidate for catheter ablation since I hate taking pills and I was not far along in the Afib progression. I did have the catheter ablation 4/11/19 and I THINK it worked. Have not had an Afib attack since May 21st. Am generally back to where I was in 2017 before Afib was diagnosed.

BUT it was after the ablation I got serious about reading up on Afib - I had a very difficult first 2 months of the three month recovery (extreme fatigue, breakthrough attacks, anemia, depression) , which is what led me to this group and made me realize how woefully unprepared I was and that doctor wasn't going to be much help even when I could get through the wall of Physician's Assistants and nurses who are the gatekeepers in the USA just like I have come to understand they are in the UK.

Here's what I learned:

Afib is awful, but it won't kill you as long as you don't have a stroke. That's what the anticoagulant is for and I will probably always take it unless medical science improves. Running off to the the ER (what the Brits call the A&E) may be a bad idea because they may over-treat and scare you more. I learned to wait out attacks and heart always got itself back into rhythm but a couple of times it took 12 miserable hours. I learned I could get through some tasks of life even with a 150 heart rate. I never stayed in Afib long enough to require a cardioversion, alltho in my one trip to the ER they did one - which didn't work because my heart was just not ready to go back into rhythm yet.

Meds affect everyone differently - I see many others have already replied to you about meds and it comes through pretty clearly that there are wildly different reactions. This is where the nurses and PA's can help - but sometimes you have to be really pushy if one of the meds seems to be making things worse. I had the ablation so I could avoid anti arrythmia meds, but people make different choices for different reasons. If you choose the medication route, I hope you find a set of medical people willing to work with you instead of telling you to shut up and eat your peas... I flatly refused to ingest amiodorone and the EP worked with me on it and prescribed a small dose of metoprolol during the recovery period. But that's me - the point is that the Doctor did work with me.

Lifestyle changes do work - not the same for everyone but there ARE 2 big ones - weight and alcohol. You won't find a reputable source that says daily drinking or drinking "a few pints or glasses of wine" at a sitting is ok. It may not be an immediate trigger at the moment, but drinking takes a toll on all hearts, particularly those already in trouble. I quit entirely for the recovery period, and don't know if I am going to chance staying within the super strict recommended limits after 7/12/19. (one drink at a sitting, 3-4 days a week.). Might be easier to just leave it alone.

Weight weighs us down. Period. If overweight people can lose some, all to the good. (I'm one)

There is some credible research that sugar is a real culprit. I have a real sweet tooth and that's going to be hard...

As for all the people sure their own dietary experience or medication experience translates universally, take it with a grain of salt. Everyone is different. Experiment - and don't be scared.

For me personally, moderate exercise (2 miles a day, gardening...) and playing music (Playing, not listening), and the breathing that goes with yoga or vocal exercises has helped

Whatever you choose, try to remember Afib is awful but an attack is not going to kill you - may make you wish it would, but you WILL come out the other end. Take the anti coagulant but feel free to fuss with the proffessionals until they get the meds right for you.

And DO at least talk over ablation possibilities with your doctor.

Cavalierrubie profile image
Cavalierrubie in reply to Oldiemoldy

ps You sound a great guy so stay as sweet as you are. God Bless

Cavalierrubie profile image
Cavalierrubie

Thanks for your help. I am having awful time with meds, I know the anticoagulant is the most important and we have to have that. My body always seems to reject drugs and so I expected a rough ride. I find this so scary at the moment, its not the illness its these horrible drugs. Its an ongoing nightmare right now. Thanks for taking the time to reassure me, its really appreciated. I wish you well. Christine.

DawnTX profile image
DawnTX

Please remember it takes weeks for your body to adjust to a new medication. If there is one thing I have learned since my first a fib event, it is that I have learned I must learn to be patient and open minded because when it comes to a fib, we are in it for the long-haul there is no cure, and every day can be different. It takes a while, and even then some before we learn to be not as focused on it even sometimes now I am much too aware of it in a fib itself does not kill remember that, so do what you were told take your meds and ask questions if you have them. I am just starting to learn to live without always thinking about it. You cannot let a fib run your life or you will not have any life of your own, or your body will tell you, if you shouldn’t be doing some thing because you probably won’t be able to do it, you might be exhausted or you will feel reaction to what you were doing. And with me it has always been the breathlessness in the beginning and even now I still fight fatigue because once you stop doing some thing such as working out at Cetera, it does not take long before you need to rebuild your endurance. If you go to the gym, think about if you are sick with the flu and don’t go for a week or two. How hard is it to get back into it it doesn’t matter how long you worked out you’ll lose that endurance fast and must rebuild. Listen to your doctor ask him what you should or should not do. Except for my fatigue, my EP has told me I should be doing pretty much what anyone else with a heart can do. I am 71. I don’t think he means try to keep up with an 18-year-old. Lol but not to hold myself back so much that I do nothing.

There is nothing easy about a fib or flutter. It’s finding a happy medium between everything.

TracyAdmin profile image
TracyAdminPartner

Welcome to the Forum, I am sure all the members will offer their own advice and shared experiences. PAF symptoms vary from person to person and sadly can be painful and inconvenient. If you would like a chat or any support, our patient services team are here to help. Call us on +44(0)1789 867 502 or info@afa.org.uk

Take care,

TracyAdmin

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