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AF Association
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1st time, compleate terrified newbie

Hello everyone, my name is Sharon I’m a newbie I have just been diagnosed with PAF about 4 weeks ago I’m 57 I have only had two episodes the last one A&E managed to get an ECG the first one was about 15 months ago and was passed of as anxiety . Both times I didn’t know what was going off and I was terrified, racing heart, skips, jumps it was horrific I had a really hard time trying to calm myself down when all I wanted to do was run away from the horrid thing, my whole body was vibrating with the beats, my husband was really freaked out too. As I was already under cardiology for svt and eptopics I had all the normal tests done and all came back normal, I’m not overweight and heart disease does not run in the family so as you can imagine I was hit by a bolt of lightning , I thought that my life was over, I kept thinking “why me”

Life was getting good, I have four beautiful grandchildren holiday booked in June and Then this! I didn’t want to get out of bed the next morning and I ate nothing but broccoli for three days I case it was food that had set it off because before the event I had eaten a meal and went to bed on a full stomach then I had fallen asleep and then bam! There is was. I went to see the cardiologist last Friday and he offered me an ablation ( by the way I have read all I can do on AF and watched the vids on you tube) so what do you think? Do I wait about to see what happens or do I just go ahead and have it done? I would value all your experiences and help please, I think this is an excellent site and I have spent many an hour seeking inspiration and reassurance on here, and you all helped me get out of bed on that morning when I had the “ poor me, why me” moment so thank you so much for being here . By the way since the diagnosis I have gone, wheat free, sugar free, meat free and fat free also I have stocked up on the suppliments, all that being said I’m still terrified of having an episode and going on holiday

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AF 'attacks' are horrible.I have only had two or three in several years and no ablation.At 57,in my humble non medical opinion ,you should definitely accept the ablation. There seem to be long wait. lists on the NHS so you can always change you mind later if you want to.You will get lots of good advice here on this site.People are kind and well informed.I guess you have seen an Electrophysiologist rather than a cardiologist ....the former is the person who would do an ablation. But wait for all the good advice that will come here and good luck.

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Thank you so much , for your reply I haven’t seen an ep yet just the cardiologyist who said he would refer me for an ablation.

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Welcome to our world Shari. Yes it is scary when it first happens but unlike 20 years ago when I started on this journey there is lots of information out there and AF Association has helped thousands by providing the fact sheets on the main website as well as this forum. You will find lots of friends here.

As fan of ablations (three so far and no AF for ten years) I would always consider it an option and sooner rather than later but find the right EP with a good track record as not all are equal. Whilst lifestyle changes including weight loss (BMI less than 25 ) and dietary changes may help lighten the AF burden it could be that your choice may be a little OTT. Healthy eating with the emphasis on natural products rather than processed foods has been shown to help as has reduction ( or elimination) of alcohol etc. Oh and stay well hydrated at all times.

Here in UK we are seeing more studies to suggest that AF may actually be a symptom of some deeper issue but it is all still very new science as any treatment for AF is only really ever about improving quality of life (QOL)

To counter your WHY ME? ---Why no!. In UK there are over a million diagnosed people with AF and probably another quarter yet to be found so it is far from uncommon. My neighbour has just been diagnosed. So long as your stroke risk calculator has been done (CHADSVASC) and you are anticoagulated if appropriate life can be pretty good once you stop worrying and yes it does get easier. There are probably 10.000 members here who will agree. Ask anything and we will try to help.

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Thank you so much for your wise reply, and it’s so reassuring that I’m not the only one. What I need now more than anything else is some good old reassurance x

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Once BobD has spoken, there is often little to add, but I’ll try! Firstly, I’m pleasantly surprised at the speed at which you have been offered an ablation, I assume you were already in the system due to other heart issues. You are quite young and clearly active so, if I were you, I would follow 10gingercats advice and get on the list, but use the waiting list time wisely to be absolutely sure that an ablation is right for you. A lifetime of taking quite potent drugs didn’t appeal to me, and I certainly have no regrets, but should you change your mind, no time will be lost (but I suspect you won’t).

As far as flying is concerned, many thousands do not let AF prevent them from travelling, but there are some sensible precautions you can take to make the journey less onerous. Give yourself plenty of time for all the airport procedures at both ends and maintain Bob’s advice on drinking lots of water, the extra trips to the loo can be helpful too! Check out health care centres in Malta which might have some knowledge and understanding of AF and make sure your travel insurance covers all your conditions.

Regarding your reference to broccoli, if you are taking warfarin, excessive, unregular amounts can cause your INR to drop considerably.......hope this helps.....

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Thank you for your kind reply with lots of good tips. I’m not on warfarin or anything just bisoprolol , dr says I don’t need it at this stage .

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Hello Sharon and welcome. It all sounds so familiar to me - even down to the ‘why me’ question.

It is a big jump forward to accept the presence of AF in the background of your life and to focus attention on the really important aspects - gorgeous grandchildren, lovely holiday etc. I found it too easy to waste time worrying in case of heart problems, rather than living my life - not always a straightforward thing to do, but practice makes perfect.

Regarding your holiday, IF you have an episode, it will stop, go away and leave you to enjoy yourself. Calm breathing helps, as does lying on the right side - don’t let the possibility of an episode imprison you - I did that at the beginning and it really wasn’t the answer.

The choice for ablation has to be yours but, were I 57 again and offered it, I would seriously consider going ahead.

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Thank you so much for your kind reply, and for reading my post x I will try and chill out more about it and yes I will think very seriously about the ablation,

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I can only speak of my own experience, I ha my procedure yesterday an I am already feeling so much better, I wish you well with your own decision xx

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Thank you so much for your reply and all the best for your speedy recovery I’m glad that you feel better x

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Hi Sharon - you found out the same age I did. Read some of my own posts for inspiration.

You get in front of this and adapt, improvise and overcome. It's all risk management. I had infrequent PAF events as you and on meds. That worked until it did'nt. It only gets worse with time and time is the X factor. I would not rush into ablation but would not put it off either. Ask for guidance from your EP on his successes and your expected outcome. Then roll the dice. I am 16 months successful post ablation. Had 2 minor AF events cured by PIP (Flecanide) and even survived a PE that put me in hospital 12 days after Ablation. Good luck. :^)

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Thank you so much for your reply, i will read all your other posts too, at this stage I need lots of reassurance that things are going to work out fine in the end. So pleased you had a successful ablation , x

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Im an " experienced" a fibber of almost 2 1/2 yr, and the one thing Ive learned and know for sure is it gets easier. You are in what I call the " shock and awe" part... kind of surreal. Over my 2 yr, Ive read and educated myself and thru forums such as this, have learned to chill out about it. Im still on the fence post re ablation but Ive gone from hell no to a maybe. Ive decided to decide. So giving myself the summer to eat healthier, lose wt, exercise more and when I go back to EP in the fall seriously consider it.

Hang in there. With knowledge there is power. No one understands how you feel except a person that has walked this path, which you will find many knowledgable, caring and kind people here

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Thank you so much for your kind reply , it’s so reassuring to know that I’m not the only one out there. And yes knowledge is power but too much knowledge can be scary too lol x

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12 and 10 years ago, two years separating them, I had paroxysmal afibs,I am strongly convinced they were part of my menopause journey. I was also offered an ablation but I countered that if I have another one, we will go ahead with it. Never had another one. I also have high blood pressure and if you check pubmed, both ACE and ARB inhibitors for blood pressure help to prevent electrical remodelling for paroxysmal atrial fibrillations. So I said yes to the ARBs. Whether that helped me or not, I don't know. I just recently had a bout of PACs and doctor insists I take a NOAC (despite a rectal bleed after 30 days) but I am in sinus rhythm now but sill still probably take the NOAC. Not being overweight is a big plus. Try to combat the anxiety/stress. Take magnesium if it is medically sound for u. Afibs are awful....they tell you do stay calm...right.....

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Thank you so much for your kind reply, x I will take in all your good advice and good luck with everything x

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At home, as on holiday always stay up for at least 3 hours after a meal, keep them light in the evening. Also cut the alcohol and cold/fizzy drinks generally out, keep caffeine low and in the morning and no flopping in to bed exhausted having over done the day. One more tip, start practicing breathing/Mindfulness exercises and keep them up whilst on holiday. AF can be managed if not completely deleted.

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Thank you so much for your good advice x I will take note .

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I was diagnosed A fib at age 55 but was asymptomatic for 2 years and the episodes did not last long. However the severity increased last July and this resulted in increased medication of flecainide and diltiazem which were far more intrusive on my life. I had an ablation 29 January for A fib, and I had to have a second for atrilial flutter which developed after the afib was cured (well cured as I can tell so far).

I came off the flecainide 8 days ago , have started doing more excercise and have had no problems since the ablation. I am looking forward to ditching the remaining drugs on the 8th May after seeing my EP.

You should not worry about the ablation neither of mine were a problem, as others have also said, I have had more pain at the dentists.

I do not know all your detail condition and am not a doctor but if your consultant advised an ablation will help you then I would pursue it.

Cheers

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Thank you so much for that x glad your 2 ablations went well for you I’m seriously thinking about having an ablation for mine, I have no other medical issues I’m usually fit and well .

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Hi Shari1007, You will get lots of good advice on here from many experienced Afibbers, however remember that it is (advice) mainly from our own experiences, and not necessarily medically sound. Having said that,invaluable nonetheless.

One thing I noticed from your post is that you said you went to bed on a "full stomach"! That imo is a possible trigger for your Afib. I hate to say this as an avid lover of late dinners/suppers, but those days for the time being (of even permanently) may be over. Many on here will testify that a full stomach of food or drink, will cause Afib to kick off - time to keep an eye on that one.

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I really can't add much to what the others here have said, but only echo what Hoski told you, it does get easier to cope with, in time. I would not put off your holiday, so what if you go into AF while you are away? Just keep calm and get plenty of rest, stay hydrated and eat carefully, and you will survive it and come home having had a holiday. The AF is unlikely to go away for good on it's own, so get on with life despite it.

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Hi Shari1007

If they are offering to help grab it with both hands and get the ablation done as getting an arrhythmia condition recognized never mind treated can be a long journey.

Sending you positive vibes and best wishes

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Thank you, best wishes to you too

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57 is not that young to start with AF. On my seven year journey (now 52) i have met many people much younger than me. Please do not feel worried about age, there are many reasons why anyone can suddenly start with AF. I myself had the a virus which attacked the heart start mine so obviously i had no control over it whatsoever but with a loving support network both on here and at home life will get better for you i am sure...please keep us all posted

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Thank you, and yes I will

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Hi, Like others have commented here, it is very scary at first, I lived abroad at the time 17 years ago and had very little support, and luckily very little AF. When I returned to the UK after a few episodes I was given Pill in pocket medication and so far ,in the few episodes I have had it has proved very effective, and given me great reassurance. Did your Dr. suggest this? It could help you feel a bit more confident ,especially with your planned holiday. I have also had CBT for anxiety which I believe has helped as well. Most folks with AF live quite amicably alongside it eventually, and it stops being the ogre we perceive it be on first being diagnosed. We don't have to like it ,but we can learn to deal with it by taking appropriate action to lessen the number of episodes or severity, whatever that may be.

Best wishes, Kath

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Thank you Kath that is very reassuring x I will have a word with the doc about the Pip thank you

All good wishes

Sharon

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Everyone is different, and few of us are MD's, including me, so great risk of us passing along information that may not be medically sound. I live in US and while UK and US are both very advanced on medical issues, probably some differences in terms of views, procedures, etc by our respective medical communities.

Now realize I had episodes going back 5 years, approximately once a year, but this year had two in same week which led to PAF diagnosis. Like you, have grandchildren and things were going along perfectly...until then.

Tried PIP approach, which worked pretty well since didn't happen often to start with, but it was becoming a little more frequent.

Had ablations (both atria) couple months ago, and so far no issues after procedure. No guarantees this will work forever, but since the medical thinking (at least in US) seems to be that ablations are more effective earlier rather than later, went that direction. Several MD's/Cardiologists not affiliated with each other gave me the same advice.

As you may have seen on other posts, the risks of ablations are very low. No procedure is without some risk...but if one is in good health, statistically the risks are very low. The greater risk, apparently, is that the ablation is not successful, at least the first time.

While there are some posts to the contrary, believe most posts suggest, as was mine..that the ablation procedure is relatively painless and short recovery time compared to many other surgeries/procedures.

While don't know if my procedure will be a success long term, I don't regret having the ablation and would do it again with same facts.

Best wishes...sure this will progress well for you...as many have commented, it seems like the end of the world when first diagnosed. But it becomes more clear over time that it is a manageable situation...and much better than many other health issues.

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I appreciate the doctors speaking out as I know I am a little ocd when it comes to a fib and gathering info. It is extra reassuring to hear a doctors perspective when he/she has walked the walk. Thankyou.

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Sorry - my note was not clearly written...I am NOT an MD. However, I have two close friends who are MD's - one a cardiologist and another a neurologist who has AFib. Anything my EP says, I bounce off the other two MD's, and all 3 of them have given me the same feedback reflected in my prior note.

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Hi Shari

I’ve had chronic Afib for 10+ Years and deeply regret spending the first 5 Years stressed and anxious about my condition - this truly made the whole situation much worse. I’m now very accepting of my situation and realise that there are other people who for no reason like myself, find themselves with a greater challenge like a terminal disease. My dear friend is fighting ovarian cancer at the moment and I am so well in comparison . I found studying ‘mindfulness’ to be one of the most empowering things to do. The more I managed my internal thoughts, the easier it became to manage my condition - I was also terrified to begin with. I will always be in Afib but manage my rate with a little beta blocker. I fly every month either within Australia or abroad. I still work and lead a very active and wonderful life. Since changing the way I view my condition, I’m not even aware of it anymore. Don’t let this pesty condition dominate your life - the more you relax, the more your heart will adjust and the more comfortable you will feel. Good luck with it all. Jules 💓

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I could have written the same letter! On holiday in USA as I read having had my 3rd episode last night,lasting 6 hours. It’s not great, but the mind makes it worse, so keep calm if possible.

Am returning soon and hate flying so I think this stress causes my afib. But it is something I want to do ,so I do it - no bravery medals, just trying to take control.

This site is truly wonderful .

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