I was diagnosed with af end of October and since then I have read nothing but bad things about it. How it can't be treated it will be permanent and no procedures work when cardiologist tell me different. Have I just read worse case scenarios as I normally do that. Please advise with positives
Af and scared all the time: I was... - Atrial Fibrillati...
Af and scared all the time
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Cheryl52
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BobDVolunteer
AF WON'T KILL YOU - FACT. Not unless you try to run a marathon in AF.
Any and all treatment is for quality of life.
Ablation works for many people but may take more than one procedure.
Medication can control for many years in some people.
There is no difference in final outcome between rate and rhythm control so what works for you is best.
Those are a few bullet points from a member who started his journey some 20+ years ago and is still alive and kicking , though not as hard as once upon a time.
Bob: Any and all treatment is for quality of life.
I understand you're trying to be reassuring, but I don't think sugarcoating things is helpful, but rather misleading and may lead some not to seek proper treatment in a timely manner.
Proper treatment, be at rate control or rhythm control, is more than quality of life. It can be the difference between a healthy heart and heart failure, or worse. So yes, a fib untreated can kill you earlier and you do not have to run a marathon to be a victim.
And I'm surprised of all people you left out stroke risk, and the need for anticoagulation when warranted.
Lastly, there are some new studies suggesting rhythm control, when tolerated, is superior to rate control.
Jim
I tend to agree with you, Jim. To put it into perspective on my first afib attack in November my GP called 911 because she said I could go into heart failure as it had been beating so fast for so long. Also my cardiologist told me to go to ER if it happens again and is racing for more than 30 mins. Because when it is that fast and the ventricles become involved then organs can become stressed etc. and the heart becomes worn out. So I am confused as to the different points of view. My EP said it won’t kill you but that I should have an ablation so I can travel-in other words I don’t want to be somewhere remote and then have another attack 🤷🏼♀️
I tend to agree with BobD. There are too many different opinions from different EPs and specialists. My EP who is a top Professor in his field says when I get an episode sit it out, it won't kill you and mine go at fast rates for up to 36 hours! Yes, I am waiting on an ablation but he also said it would take a very long time as a very fast rate to cause heart failure.
I can see that many specialists give different advice. I trust mine
Probably the advice given has something to do with the health of that patients heart and how much they can tolerate . Mine said 24 hours if not settled
I'm with you there. I'm an example of AF not directly being life threatening but the severe mitral valve leakage its caused is.I'm hoping too, that the Cox IV Maze they intend to do when they repair the valve, will provide better than just QOL.
Ducky quite often it is the other way round. ie Valve leakage causes the AF due to excess back pressure stretching the atrium.
That's what I had assumed but my echos, when first diagnosed with AF, showed no valve issues or atrial enlargement. It only appeared 5 years later.You know me Bob, I have to be different, ducking and diving (pun intended) living on the edge. Makes life a bit more exciting 😀.
Ang 😊
These changes are often a consequence of AF, as well as an underlying cause for many people. It’s like a negative feedback loop. A cardiologist or cardiac nurse can explain it a lot better than a well-meaning “Bob from the internet” who doesn’t know what they don’t know.
I have no issue with "Bob from the Internet"s reply, as it is usually the AF that's the thing that causes the valve problems.Ive had things explained by my EP and cardiac surgeon and both advised that it was the other way around in my case as there had been no prior valve issues, having had AF for 5 years, when the atrium then started to enlarge.
So, obviously, I am in agreement with the experts but have no problem with Bob's reply as it may apply to someone else and may prompt them to look into something further.😊
I just like to say that I don’t come onto here often but it’s nice that you do seem to calm a lot of people down Bob as I see so many people on here checking there heart rate and fretting about afib that I wonder if like my own dr says we can sometimes bring an attack on through worrying about it so thanks for the good advice you give people
AF is both the consequences and the cause of valve leakage, and deteriorating valve regurgitation will worsen AF.
Yes stroke risk which happened to my husband in July just gone .
What goes round comes round, when I was diagnosed 2011,I was told rhythm control was best option and am still taking flecainide 13 yrs later.In addition it is not always necessary to scare newly diagnosed people sh**l*ss.
Information giving should take place in a timely manner, apppropriate for the needs of the patient at that time. This is not an uninformed comment, oneof my many hats before I retired as a clinical nurse specialist was teaching communication skills in a multidisciplinary setting.
BobD....I have only been diagnosed since Feb 2020. Had an ablation Aug 2022. Your comments are comforting. I go months with normal hr. Then out of nowhere it starts. So far with communication with Dr...I adjust my meds. Thanks for the confirmation.
We have all been where you find yourself today, Cheryl and anxiety about our diagnosis was a common factor for most of ue. I didn't think I was going to die, I knew it. Of course, the fear made the AF worse.
Positive things - AF usually doesn't kill us, it just can feel like it sometimes. The symptoms of Af can be treated, which can treat the physical effects. I have had AF since about 2006 and at diagnosis in 2013, the upper chambers of my heart were dilated from the stress caused by fibrillation. My cardiologist told me that controlling symptoms would give my atria a chance to return to normal size.
Treatment of symptoms does work as many of us on this forum can verify. I have taken anti-arrhythmic drugs for 10 years and in that time I've had no AF at all - that is an improvement from daily bouts of walloping heartbeat. Ablation has been a boon for many - stopping the debilitating episodes and giving peace for varying lengths of time. Cardioversion is another method of returning the heart to sinus rhythm.
Lifestyle changes are sometimes essential - depending on the patient. I stopped all alcohol, artificial colourings, flavourings and sweeteners and shifted to a mainly plant-based diet. A healthy BMI helps too.
Try not to be disheartened, trust your cardiologist and read the correct information on the AFA website, not the scare stories on Google. You'll make it to a better place - we all did. Any questions, just ask - someone will be here to answer.
Thank you for your reply. I am on bisoprolol and edoxaban. Think my anxiety as taken over me tbh. I am always checking pulse etc. No one understands if they don't have it.
That's me exactly. I knew something was wrong but no idea what it was apart from feeling not right sometimes. On diagnosis of AF I became a wreck overnight. I've always had a little bit of anxiety looking back..AF became every day I think caused by my anxiety. I could feel every odd beat. Sensations everywhere. Constantly checking with my increasing hardware of medical equipment 🙈. No meds seemed to work for my AF. Finally had an ablation in December. Still feel the sensations but on checking I'm in nsr. But I'm really trying to get calmed down and it helps. Just talking to someone wether it's a friend/family member or a local group helped me.. Try relaxation therapies. Balance app is free for a year. I know from example it's easier said than done. But now I'm a bit more calmer and I can finally feel like I'm getting there. It's just totally normal for some people to worry about health issues. Take care.
Thank you so much x glad u feel better did the ablation work x
Yes it seems to have so far. And this has been calming my anxiety a bit. Like you I couldn't even be in a shop without thinking everyone knows I'm ill. Just got to remember that it's just anxiety. Just a feeling. And feelings can't hurt you.
Thank you thats so true. Glad it's worked
And you are on meds to help - hope that is helping the symptoms. My poor sister has had it since October and not a single tablet been given till 'tests' are done, which is taking for ever. She is scared witless but hasn't strength to fight. Good luck with your journey to 'normality! Xx
I’m the same as you , I never feel relaxed and suffer with anxiety , but that just makes it worse try and relax I know it’s easier said than done
I have been there and can become almost manic about checking pulse. Once drug regime is established it’s a case of managing to live with condition. It might be worth investing in a Kardia Mobile which fits to the back of your phone and with an app you can monitor rate, not to be always checking but to inform future discussions with medics as it keeps record. Search online for kardia.com
The one thing that I would add to Finvola's perfectly said reply, is that I would advise not to always trust your doctor. If you are well read and studied on Afib- symptoms, meds, procedures, diet, excercise etc. and your doctor is not listening to you in any form, seek out another. Not all electrophysiologist/cardiologist know their stuff well or care for that matter! Blessings..
This is a great response. Your situation may also depend on other chronic issues or if there are reasons why youhave AF. The advice on this forum is great, but af can present very differently for each of us and whether we see a cardiologist, Electrophysiologist or gp, will also change the advice we are given. I am about to cross over from being persistent to permanent . I was paroxysmal (af coming and going for 17 years). I was terrifiedof having af all the time, but gosh my QOL is so much better now. In the early years I was scared, now I hardly think of it.
Hi Rhiannonimity Ive had paroxysmal af on and off for 4 years slow af got to admit had a few drinks alcohol over the festive period and now in persistent af as it hasnt reverted back and doesnt feel as if it wants to usually reverts to nsr after a couple of days I take
edoxaban 60 mg as well as bisoprolol eplerenone and entrestro also t2 diabetic and really in no discomfort Im going to give it a few days to see if it will return to nsr on its own what do you think any info appreciated yours
Lolabob
Hello Cheryl,
Just try to relax, firstly try deep breathing, which I find works really well.
I won't pretend, there are ups and down with Atrial Fibrillation but I am still her and enjoying my life after almost 8 years.
I am sure you will receive lots of supportive replies from this forum, also have a look around on previous posts relationg to yout particular issue at the time and you will find masses of very good advoce.
I think it would be helpful to know a little bit more about your experience and diagnosis.
I am assuming it is Atrial Fibrillation only, but please explain and we will all do what we can to make you feel more comfortable with your diagnosis.
with very best wishes.
Joan
I have replied about my condition. Is paf and I am on bisoprolol and edoxaban after ecg confirmed episode
I’ve been recently diagnosed with paf and I panicked, health anxiety kicked in big time , thought my life was over ! However this group has been amazing and there are lots of resources on here . I gave up caffeine and alcohol and I try and keep a diary of when it happens and what can trigger it .
I’m waiting on a scan before we look at medication and honestly some of the medication terrified me , pip being one of them . I’ve got lots of questions for my next appointment so knowledge is key but avoid a rabbit hole !! Good luck
Whilst there are some heavy duty medications around, I’ve had no trouble at all with any of mine which are the commonly used ones - Edoxaban, Bisoprolol and Flecainide. Not a single side effect that I have noticed. I’m a 68 year old woman and I’ve had AF for 4 years. I have used Flecainide as a PIP with no problems.
That’s good to hear .
Be aware that “bisoprolol” can cause anxiety, depression and other side effects in some people. Sometimes the meds (beta blockers) can make the situation worse. Bisoprolol seems to be the first choice but doesn’t mean it’s always the best, and best for everyone.
20+ years with AF, 3 failed ablations and still going strong with absolutely NO quality of life restrictions. In and out of AF on a daily , hourly basis. HR 39-190. Electro cardiologist says if it doesn’t bother you then nothing to worry about. If it stays low or high for a period of time then get it checked. I’m in and out, high-low within seconds never stays. I average around a 90HR. Everyone with AF will have a story ! Everyone is different there is no normal with AF symptoms.
My husbands rate is very similar to yours , up and down like a yo yo
Hi Clareowenpearcy! May I ask which medication(s) you are on now?
Xeralto 20mg once a day
Diltazam (Calcium blocker) 180mg once a day
Hi Cheryl and welcome to our forum.
The majority of ablations help people.
Has anyone ever told you that AF is not a condition that is known for killing people? So look forward to a long life. Now I'll admit that some people suffer more from attacks of AF than others, but having an ablation or finding the correct medication can help greatly.
The following is a guide to what a lot of people have discovered with AF:
Having had AF for 19 years, three ablations (where they go up through your groin to burn or freeze the inside of the heart the rogue pulses often come from) and numerous cardioversions (electric shock to put the heart back into it's correct rhythm) my advice to everyone diagnosed with AF is the following:
1. Be Aware you are most unlikely to die from Atrial Fibrillation (AF). I used to think that the way my heart bounced around I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar, alcohol and caffeine, also losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't! They have helped some people though and my AF now is not so severe.
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt! In our minds AF is only as bad as we have experienced, for some attacks are mild for others they're more severe.
4. Make sure you don't slouch, or unwittingly do shallow breathing while watching tv or if you're online. If you do your heart will protest. Also avoid tight clothing around your waist or chest.
5. Try supplementing with magnesium, any type except oxide I take glycinate, also take taurine, zinc, vitamin B complex, D3, K2 & C). I feel fine and there's little I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
6. If over 60 I would make sure that you’re taking an anticoagulant to prevent blood clots forming and causing a stroke. Note that they do not thin the blood in any way, just stop it from clotting so quickly. You should not notice any major difference in the way you bleed.
Hope this info will help you.
Jean
Brilliant reply
Great reply Jean 👍
Great reply. Full of positive recommendations and a level headed response to a genuine concerned original post.
Excellent reply as always Jean.
Great reply. I'm with you on gadgets though I know others find them a great help. I have enough trouble not reaching for the B/P machine if I'm stressy!!
Once I had just gone to bed and then thought 'my heart is feeling really calm I wonder what rate it's doing'. I climbed out of bed and walked to the dressing table where my BP machine was. By the time I got back into bed, ready to strap the machine on, my heart was going berserk. That's when I realised the power of my mind and how I could create an AF attack just by thinking about it.
Jean
Thank you
Hi Jean, interesting that you mentioned slouching. I slouch when I sit down to watch TV and my chest often feels tight. I also think I don't breath deep enough. At night time my chest feels tight sometimes. It's as if the cover is too heavy. The cardiologist prescribed a stress test, but my heart is normal. I had a successful ablation five years ago. Lately my heart rhythm is not so regular. However, it's not fast at all. I hesitate to go back on flecainide, which I took from 2016 when diagnosed with AF. I stopped it in 2019. Now as I have irregular heart rhythm more often, my cardiologist prescribed it again, but I hesitate to take it.
I'll pay attention with my slouching from now on. Thanks
A very full and considered reply. A lot of practical info and advice to take away. Thanks Jean.
Love reading the knowledge that Jeanjeannie50 shares with others regarding AF it a medicine itself for anyone who’s going through it ❤️
Hi and welcome Cheryl - yes you have just been reading bad things and they have scared you. Fear is the enemy - even more so than AF. Take note and get immediate help for coping with Health Anxiety. Know that it will pass, as Finvola says - we nearly all were in the place you are now.
You have joined your tribe of fellow AF’ers - and it ain’t all bad!
You’ve already had some really great replies and not much I can add but do endorse everything that’s been said.
I’ve lived with AF now for nye on 20 years, it hasn’t become permanent but as I am now 20 years older and I am better informed and hopefully a little wiser, I don’t believe I am going to die of AF but I may die with AF - you know we are all going to die - of something!
I don’t take any meds - other than prophylactic anticoagulants because my stroke risk is very high and my bleed risk low. I’ve done the gamut of treatments in the past and they all helped but they also come with risks and I was unfortunate enough to suffer from a few of the risks so I adopt the Lifestyle adaptations which are known to help and have adapted my way of life accordingly.
I have other conditions which affect my day to day life far more than AF which is now intermittent - episodes come now mostly when I have infections - I can have a lot of those back to back purely because I am immune suppressed but even then my ‘AF Burden’ is between 2-4%.
Take heart - literally - from the many thousands of members here who have been where you are now and come through and found their own pathway to living with AF.
Best wishes
PS - the only difference I have with Jean’s reply is that I embrace gadgets which give me information on my biology but I don’t become obsessed or worry if I see anomalies. I just get curious. Gadgets have their place but are not for everyone.
I practice Mindfulness and Meditation most days along with Yoga and Tai Chi - they help enormously with stress.
Where I agree 100% with Jean - is getting on with living your life! When you stop living by withdrawing from activities and everything you enjoy - THAT’s when you start dying.
Good luck.
I'm with you on gadgets or anything that gives me information regarding my health. I like to know what's going on, the more information the better, so I can make informed choices.
I'm in the gadgets camp too. How can you make informed decisions without information?
• in reply toCDreamer
Yes, I'm all in favour of my gadgets too! Apple watch and Kardia are there to reassure me and inform me when I need it, and help reduce my anxiety.
Hi CherylJust want to add a welcome. We're a friendly crowd, not medically trained but we understand that the biggest problems are the psychological ones. For me the "why me?", the trying to explain to others what the problem is when I'm not really sure I understand myself and the frustration of the ups and downs. Coming to terms with where we are is not easy, especially at first. So often it seems so much worse than it actually is. For me the important thing is to be independent, which I can be, albeit sometimes at a somewhat slower tempo than previously. Also I have to remember not to overdo it when I feel good.
All the best on your journey. There are folk here ready to share with you when you need it. 🙋 CM
It’s hard to take it all in when you’re first diagnosed, acceptance and understanding come with time, this forum is great for reassurance as you will have seen already above and really helps. In my experience you need to read, read and read some more to understand your condition and the treatment options.
I would start with this Fact File : api.heartrhythmalliance.org...
Then see all the resources on the following page : heartrhythmalliance.org/afa...
Hope this helps
I can’t add to excellent replies except to say that horror stories get attention, good news is usually a bit of a yawn. ‘Person with AF, terrible symptoms, tried everything, nothing helped, life ruined’ is more of a story but ‘Person with AF, controlled with meds/successful ablation, fulfilling life’ is not. We do have posters who fit the first scenario through no fault of their own but those who fit the second often head off into the sunrise! So on all forums etc the balance tends to be skewed in favour of those who are struggling in some way ❤️🩹
Afib can be treated and it's important to seek treatment from a qualified professional as soon as possible. Ideally, this is a cardiologist with extra training and arrhythmias who is called an electrophysiologist. (Ep). If one is not available through your health system, at least try to get a referral to a general cardiologist.
That said, not all cases of a fib are alike. For the first 40 years of my Afib journey I needed hardly any treatment because my burden was very low. Later my burden increased, and I needed medication and finally an ablation.
Again, the best person to guide you would be an electrophysiologist or a general cardiologist.
With proper treatment if needed, you should have a normal lifespan and hopefully a normal life in almost every respect .
Lastly, be wary of how you process negative afib stories on the internet. Those who have successfully treated afib or where it's a non-factor in their life, do not tend to go online and seek support. So forums like this are skewed with people who tend to have harder to treat cases.
Jim
Totally agree mjames1. That sums it up nicely. 👍😊
I called an ambulance as one morning when I got up my heart was going fast and flip flopping he said I was in AF which I knew nothing about. I had high blood pressure so on betablocker bisoprolol and blood thinners edoxaban. Was only given a leaflet and sent home. Saw cardiologist who Said my echo showed some thickening on lv but not concerned. And LV borderline dilated. But just scared all the time as its par af. And can't stop checking pulse. Driving family mad. Been off work weeks with stress as think my life is over. I just read all bad things no meds work ablation don't work. All your replies have really helped and no one knows how I feel at home. It's hard
Cheryl, I was diagnosed in November when I was sent to ER by my dr. I have since seen a cardiologist and an electrophysiologist I am 56, fit and live in the US, originally from England. I don’t take meds, both drs have repeatedly told me I can have my morning cup of coffee. They have told me I can exercise as normal with no limit to the upper heart rate. I can have a glass of wine .. but they also tried to schedule me for an ablation at the end of this month because the sooner it is done the easier it is to fix. I am not in permanent afib though, but I do have mini episodes which seem to be settling down. I think you will be fine but maybe you could try and schedule another appointment (I know it is difficult in the UK).
It's certainly true that others don't know how it feels mentally and physically to have AF. We all look fairly normal and if we have episodes of PAF, we usually look healthy in between. I tried to tell a friend what I was suffering from in the early days (heart rate 160-200) and her answer nearly caused me to shake her - oh, I had that too but I just ignored it. Right!
When I checked my pulse (frequently too) it didn't really tell me anything that I couldn't feel myself so, during episodes I lay down, quietly, breathed and waited for the thumping and banging to stop - I stopped bothering with the pulse monitor until I felt my heartrate go down. That was the beginning of being able to cope and see the way forward with the help of my cardiologist and EP. A little victory which always helps.
How long have you had it
A little tip for you, some of us share information on our profile page, click on their badge or username. More distraction to take your mind off things hopefully.
Hope this is helpful
Finding the right combination of meds can take time. Edoxaban and Bisoprolol seem to be the first line of defence. That’s how I started, then Flecainide as PIP, but that made episodes more regular until I was taking it virtually every day. Then moved to twice daily Flecainide which worked, so far 2 months with no episodes. While controlled I was still getting chest pain and SOB even with no activity, they stopped Bisoprolol and now I feel great. I have naturally low blood pressure and heart rate so can’t tolerate beta blockers. We are all different so there is a lot of trial and error, Keep a log of how you feel and what’s happening, the more you can tell GPs and cardiologist the better especially as it’s intermittent so can’t always be picked up. I’ve been to A&E twice due to fast rate episodes of over 12 hours, both times it stopped as soon as I arrived!!!!! I’m sure they think I’m a hypochondriac. I was very insistent with GPs and kept making appointments until they really understood how I was feeling, it’s a large group practice, but they all know my case now 🤣 I’m now seen by a great cardiologist who I can email between appointments.
I was terrified and angry at how slow the NHS is 6 months ago, now just getting on with life albeit slightly modified, very little alcohol, no caffeine (instant trigger for me), Møre moderate exercise rather than competing as there’s a few things that are still being investigated and heart needs time to recover from the very frequent episodes I had at the beginning.
Forums like this gave me so much reassurance and information as I was also reading every horror story about the conditions and the medications. I hope you find your way of living with this condition very soon
Hi Cheryl. I hear your anxiety...... the reality is though many people's Afib is controlled well with meds and life style changes. For some they do have to seek further interventions but there are options out there. And it's true that on forums it's full of people who are experiencing problems. The ones who aren't tend not to go on forums. Sounds to me that your cardiologist was happy with your heart assessment and was pleased with your response to drug treatment which is great news.
Have you discussed your ongoing anxiety and fears with your Cardiologist? If not ring his/hers secretary. This can be done by ringing the number at the top of the letter and ask to be put through. I find the secretaries very good. She will let your cardiologist know about the fact you are feeling extremely anxious and worrying. So much so that you are off work with stress. I think you need to be able to discuss your anxiety with the cardiologist.
I would write down all your questions/worries so you can discuss them with him/ her.
This was me, 7.5 years ago. For 6 months, I was in and out of hospital as my episodes would take my pulse up into the 250s. I was a nervous wreck and frightened to go anywhere and resigned fir a job I loved.I have had an ablation in 2021, which didn't last long. They were going to perform a Hybrid Convergent Ablation 18 months ago but discovered that my mitral valve was leaking so I'm waiting to have surgery for that and they'll do a Cox IV Maze at the same time.
Had a cardioversion (one of several) nearly 2 years ago, which has held with the help of Amiodarone.
As others have mentioned, AF won't kill you but it can cause other problems that can be an issue (ie, my valve leak)
That's not to frighten you but to make you aware that you need to be proactive with your condition and treatment. Make sure you are monitored, chase appointments, question things you're not sure about.
Try not to get stressed as that will make things worse. Everyone here is ready to help if you need help or reassurance.
Dear Cheryl, I've had AF for about 29 years. It's now permanent, though asymptomatic. I can't take beta blockers because I am also asthmatic. It's a shock when you first get it, but there's absolutely nothing to worry about it, as long as you keep taking your anticoagulant.
Of my ailments the worst is foot drop of my right foot, due to inoperable nerve damage in my right leg. I slipped going downstairs and fractured my right fibula and damaged my peroneal nerve. That happed 3 years ago when I was 75. The fractured bone healed, but the nerve hasn't. But I still get around. I can't drive anymore (in theory I could drive an automatic car with hand accelerator and brake,) but can't afford to buy one). I use buses, I walk, I forget that I've permanent AF.
Yesterday I had one of those days that don't go to plan. I had an appointment at a podistrist 7 miles away. There's snow on footpaths and roads where I am, so I was extra careful walking to the bus stop. Missed the bus by 15 seconds, and waiting 14 minutes for the next. Then changed buses after 4 miles. I was early arriving in the town where the podiatrist was, so sat in the library for 50 minutes to while away the time. When I went to the podiatrist for my 2pm appointment I found the place locked up, so had another 2 bus rides home. I'd put the wrong time down for the appointment! It was at 1.30pm. Such is life. As for my AF I didn't think about it.
Hi, I was diagnosed with AF back in 2009 after I had undergone open heart surgery and have had it on and off ever since and I’m still here. Back last year I think they must have got fed with me in A&E so often that they gave me a Pacemaker and, so far so good, I’ve been free of AF,
I felt very much that way last year. A Fib had progressed quite quickly into persistent, and an ablation lasted less than 48 hours. I was very upset to learn that further procedures were unlikely to work in my case.
However, I’m doing fine. I’m on Apixaban plus 3.75mg of Bisoprolol. Gradually, over the last few months, I’ve been more or less able to forget that I have A Fib.
Having said that, mine didn’t get diagnosed until I was 67, and I will be 70 this year. If they had caught it earlier then maybe sinus rhythm could have been restored longer term. You’re young and the cardiologists are hopeful from the sound of it. You could well find that you can live free of A Fib following treatments.
Just to say that even if it does become permanent, you really can function pretty well. Your heart just gets used to the situation. The highs and lows don’t bother you as much, and many people really can just get on with their life in permanent AFib - as long as the heart rate is controlled, and you’re protected from stroke.
Hi Cheryl. When Afib was found I was delighted, because it meant I could go on to an appropriate medication regime. To explain, I had previously had a severe stroke out of the blue. Post stroke investigations, bloods, mri' s cat scans, echo scans etc could find no explanation ie it was a paroxysmal stroke. The only unfound explanations would be paroxysmal AFib or a hole in the heart. Neither of these are actually uncommon in the population at large, but go largely undetected until something serious happens. Holter ECG's failed to detect Afib, but again that's not uncommon for paroxysmal AFib. I had a LINQ implanted ECG device which after three months detected an Afib event. At that point I was offered EDOXABAN anticoagulant which I accepted graciously.So I'm on a statin and anticoagulant for the foreseeable and very happy because I DON'T WANT TO HAVE ANOTHER STROKE - I WOULDN'T WISH A STROKE ON ANYONE.
BUT, I've had notice and I can also help myself too apart from the medication. I can make myself much healthier than I was, starting with my weight diet and cardio-vascular system. I'm not dieting but I went straight into a more intensive walking regime after the stroke. A weak right leg has now fully recovered. I found two apps on the NHS. Active 10 which records and encourages you to walk even just for a minute. I then went into Couch to 5k with GP approval and started running. Amazingly I found it enjoyable once I got past the difficult bit, going public!!! Lots of positive support from the public. So much so I have joined the Parkrun community, you can Parkwalk too most Saturday mornings when I'm free. ALL MY METRICS HAVE IMPROVED! Side benefits, all my joints have strengthened, and respiratory system the best it's been in my life.
IHOPE THIS IS POSITIVE. DON'T TALK YOURSELF INTO A DISABILITY.
My profile Male Aged 71 No longer obese but still overweight, a little more muscular and much happier and more sociable too.😁😁😁
Thank you so much for your reply you sound amazing. Everyone on here as been so kind its lovely. So glad all ok now with you. Have you had any af episodes since.
Probably, but not aware of it. This is a bonus because it's clear that Afib can be debilitating for some. I use a smartwatch and before my actual diagnosis bought a Kardia monitor on the advice of my GP. Anxiety is not good for any condition and non moreso than an irregular heart rhythm. It's important (in my view) to work hard at managing anxiety. I was anxious post stroke, it was a deeply scary experience. But from previous work, I know you have to shift focus and combat negativity. It would have been very simple thing, almost natural, to focus on what I couldn't or shouldn't do, risk analysis, plan for decline, worry about every twitch, itch or red patch! It was also a challenge to manage all the loved ones around me who were now thinking about preventing me meeting my maker! Worrying for me, and themselves too, as the world altered. Again this is to be expected and is entirely reasonable. When someone has a life threatening illness the dynamic changes. The future looks different.So I had a tracker on my smartwatch/phone when I went off for a walk and a run. (Don't use it now)
I tried to analyse my ECG outputs. Lots of people in my opinion on this site spend too much time and worry about every little blip. Devices you have access to, even the best smart watches are not accurate. For example my smartwatch gives HR of upto 180 in exercise on occasions and this is a proxy for definitely feeling more exertion. This doesn't relate to the actual exercise. ie sometimes a slow run will be a challenge and sometimes a longer fast run will seem a breeze. Clearly something is happening in my cardio vascular. But I can mark events on my LINQ implant and I checked one with the hospital who hold the data and set the warning trips for me. My HR alarm is set at 158 and this threshold hasn't been crossed in 10 months. My Afib event was at 110HR. It's the complexity of the trace which requires an expert to review and understand that's the key.
I find my time is better spent concentrating on what I can do to help myself and help the medics who have given me the opportunity to help myself!
So think about the things you can do, you would like to do better. Work hard to improve your sociability, your network , your personal health. Don't make big changes or set ambitious targets. Just do a little bit, and a little bit more. Share your little successes. Bore people to death with your improvements!
Make sure you are defining yourself and you will feel better. People are amazed by me. But honestly, I've just taken a bit of control over myself and thinking about my behaviour a little more constructively. And day by day the good outcomes have built into
" Well done buddy"
" Wow you're looking so well'
"I don't know how you do it"
Etc etc. And as a postscript - I am ageing and lo and behold another organ, gallbladder, decided to give up . Unfortunately there were complications in the operation and post op the consultant commented that I was helped by my improved fitness when on the slab. I'm not sure why, I didn't ask and didn't want to know what happened, I got through it.
Hi Cheryl52,
Lots of fantastic replies.
It’s perfectly natural to feel scared, nervous or anxious, a diagnosis like this can be daunting. It’s something that a lot of people on this forum all went through, including me.
It took me a while to get my head around it and work out what my life would or could be in the future but there is lots of hope out there.
I was a healthy and active person until I had a heart attack (nstemi type2) suspected root cause - undiagnosed and untreated atrial fibrillation. Angiogram with no interventions, discharged with medication and exercise.
For me, this is nearly 5 years ago, my arrhythmia is now well controlled by some low dose anti rhythm control medication (Flecainide) and I have been ‘Afib free’ for 3.5+ years. Post heart attack, I was also left with slight left ventricle dysfunction but this has gone and my heart is ‘structurally normal’ again.
I was on Bisoprolol and Edoxaban for a few years too but these have been removed, as I don’t really need them. It is important to say though, the latter was initially a precaution but since I am stable and under the threshold for anti-coagulation it was ok to withdraw.
At the moment, Life is normal. I am currently in a good period of stability and I honestly feel that I don’t have any limitations - I regularly run, climb, cycle and travel.
That said, I cannot tell you it was all easy though. In the first few years, the mental ‘battle’ was challenging, even more than the physical one. Sleepless nights, listening and feeling every lump & bump in my heart rhythm.
Despite my Afib being well controlled with medication, ectopics did trouble me. I suffered badly from these, they drove me ‘mad’, robbing me of rest. Prior to my treatment, ectopics were always the ‘siren call’ of an Afib episode and I was really anxious about them.
Anxiety is so detrimental to progress, easy for me to say now but it’s important to get that in control as soon as possible. I eventually turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down. I am now much more relaxed about it all and can control my emotional response to the cycles of my heart.
(I’d avoid trawling the internet for the moment and keep to sites like - AFA, BHF and NHS).
My ‘Afib journey’ has also taken another turn recently. It’s a bit of an experiment but the rhythm control meditation (Flecainide) is going to be tapered off to see if I can maintain NSR without it. There’s a bit of trepidation but I will give it a go, to see if it’s possible. If it doesn’t work out, I can go back on the meds. No harm in trying.
The way I see it, is Afib is a condition I have but I am determined not to let it define the rest of my life. There maybe more challenges ahead but I will think about it only when I need too. As you will see from this forum and others like it, everyone’s experience is different and one approach/solution doesn’t fit everyone. Work with your doctor and cardiologist to find a way forward for you, I’m sure one is there.
Keep posting and asking questions here, there is a wealth of information and a supportive community.
Best - male, 57, UK
I felt exactly the same when diagnosed 6 years ago at age 57. Panic and anxiety set in. My afib is permanent as in I've been in it all the time since . A cardioversion failed inevitably , only lasting 2 months. So since 2018 I've only been treated with medication, Bisopolol 2.5mg once a day. I live a normal life. I'm still going on long haul holidays, I went skydiving last year and my condition doesn't feel like it's got worse, I've just got a little older. I'm much more careful with my diet and alcohol. If I run fast for a bus or something I get breathless but I walk for an hour at a decent pace every day to stay fit. I can't do vigorous exercise any more. Once you get used to it you will get on with enjoying life.. There are times when I forget I've got it.
I had one incident in July 2017 and was terrified for awhile; cardiologist put me on all kinds of meds without explanation of why or what I should expect and that did not help. I had a specific incident which I am 100% positive triggered the only event I have ever had but the doctor kind of "pooh-poohed" my input....so, he isn't my doctor anymore. However, they did put me on two different monitors with no incidents and a sleep study (that nobody ever bothered to reach to me about for 10 months). All that said, I live my life as I like; can't be in fear all the time. I did drop one med (anti-coagulant) but take the others; I have an appointment with my GP next month and am going to ask about getting off the others as I don't know if I need to be or they are controlling the one-time event I had. Be safe, be calm and know your body. Also, make sure your doctor "hears" you; your input and concerns.
I too felt exactly as you do and almost became obsessed with checking heart rate and rhythm. I was seeing a cardiologist but was convinced my outlook was not good. I had an ablation and cardioversion and am on Edoxaban, Bisoprolol and Losartan (Blood pressure meds) plus a statin. I am currently AF free and hope to remain that way. I do check my heart rate and rythm too often but when I do so now I use it as a guide to do some breathing exercises or if the situation allows, meditation. It’s that what got me through pre my ablation and which serves me well now. Time has allowed me to be more relaxed about it and I hope you will be too.
I understand your fears and I know its a scary time. See if breathing exercises (try 4 square breathing as a starter) and meditation will help you - it helped me and still does. I also had a counsellor who I was able to express my fears too and that really helped as well. And know many people live good and happy lives with AF and you can be one of those people too.
Hi Cheryl, First of all take a deep breath… You are going to be Ok!
I am 56 and was diagnosed with AFIB almost 2 years ago. I too was knocked back and thought the worst.
I have had a Cardioversion, Pacemaker Implanted and more recently as expected a Ablation.
At first, I was scared and felt the same way you did. All of the sudden everything I read mentioned AFIB or Heart Issues. Every show, every movie I watched seem to bring it up, frightening me even worse.
Until I realized it was like looking at or buying a new car and all the sudden a car I had never noticed was on every corner on Every road and then it clicked!
I am just super sensitive to the word now, so I said to myself “Dude, you need to chill out!”
Of course after a good cry… and I am not a crier…
Now I promise this is the toughest part and we all think about our Parents and hear about stories from a long time ago, which in part of BS or just a different time when Pacemakers were the size of Telephones…
You are definitely in the right place to talk with people that have walked the walk, they have sure helped me and made me feel like I have Close Friends all over the World.
I know this sounds weird, but be Happy and Feel Blessed!
There are plenty of treatments and as I mentioned I have had a few and the Pacemaker that once freaked me out, is one of the best things that happened to me… I walk with Protection and sleep with protection.
I won’t bore you with the medical stuff, but it’s ok and STOP reading the negative stuff.
The old saying you hang out with negative people you ARE going to be negative , you hang out with happy people and you too will find happiness and strength.
Tonight I will say a Prayer for you AS I know so many already have… Take it easy…
One day at a TIME…and that’s all you can do, but I was where you are very recently and today went to a Basketball Game, Had a Great Lunch with my beautiful Wife and 2 Beautiful Girls…
So today was a great day!
Be well, think positive and keep talking to people in this group! Truly amazing people!
God Bless!
Johnny
Cheryl each day they are working on new things. There is no cure maybe because there are so many versions of it. Just like a cold no one has it exactly the same as another person. It is a lot of trial and error. Sometimes you get lucky I was on meds and had to ablations that held up for over a year and a half and I felt great. I don’t think it’s so much, that things fail as that a new spot pops up just like your home wiring or your Christmas tree lights where you fix one spot and later on another one goes out.
I had some great doctors that really paid attention and acted something was going haywire. Of course, mine began to act up again just as I was getting ready to move out of state. By the time I made my move, things were really bad and of course I was away from my doctor and did not have a new one yet. I did have a little bad run of luck with the first doctor in my new home state BUT I will skip to the good stuff. Believe it or not my male carrier was the one that told me about the doctors I ended up with. I was so blessed that day. Long story short this past February, I had pace and ablate which means first the implant the pacemaker. It is not very painful. At least it was not for me. The hardest part was remembering not to wave my arm around lol I am Italian I talk with my hands a lot. Two weeks later, I went back and they did the final ablation I had had three. The first two really helped they were six months apart. The third one I wish I had not gotten, but that is in the past. The ablation with a pacemaker is much different and very final. It is in the area that can fill with blood and end up clotting and giving us a stroke. This will close that off. The surgery is good for people that cannot take anticoagulants or utilize a new procedure called the watchman. if you hear about that it’s not for everyone nothing is one size fits all that’s why things so negative. One thing I have discovered here is many people just think Puff you get something done or they give you a pill. And that’s the end of it. That is not realistic for just about any illness.
I turned out to have quite the complicated case. Thankfully, my new Doctor No longer new to me fyi is a man who is passionate about helping us, and he thinks outside the box even if he ticks some people off. It was because of this but I am alive right now. A year ago Christmas. They had a hard time restarting my heart. I had had tachycardia for six months and had heart failure but again let’s go to the good stuff. My heart failure has actually improved.. I was afraid all the time I worried about every little thing I felt and because of the new style pacemaker I have an app that I watched constantly so battery life scared me. You can get so focused on your a fib, which I have a fib and flutter and the flutter is a typical it sounds like I got put together backwards lol. I don’t know if there’s anyone out there that was not focused in in the beginning and I’m sure I drove my doctor crazy with all my questions, but he taught me he actually educated me and showed me respect in that way if you listen and learn, just like Bob, here is teaching you, you will start to feel much better mentally. I have just started to feel that way in about the last month. It takes time because yes, your life is going to be changed forever, but it doesn’t have to be drastic. You have to roll with it, but not let it run your life. I actually feel like a normal human again and that was something I lost after being diagnosed . I had no idea on the beginning that it was this serious for me. You see there is not even a pacemaker for me last December my doctor found a way he told me I was not going anywhere. Meaning I’m not gonna die. He used a new technique called HIS pace, bundling among other things. In fact, he presented my case in Dallas and they invited him to teach the APs there the new technique so they could help more people like me. At the time I was the only person that had what I have I thought they were kidding me telling me I was unique, and one of a kind lol. My pacemaker has an app in which they can actually take a reading without me going anywhere. The app is on my phone. They can send me a message and if there is a problem because I am monitored 24 seven, it will be addressed immediately.. They can even tell long before the battery needs to be replaced because they don’t replace the battery they replaced the unit.
you saw a lot of negative people that are expecting too much especially right in the beginning. There is also a problem with some doctors so if you are not comfortable find another one. Some doctors seem to like to keep doing ablations and giving pills and that’s it. There are other choices but you need a doctor that knows about them and cares and doesn’t just put you in a file marked a fib. I am an individual and my doctor knows that. The doctor before him is very well known and has come up with amazing things in research. The problem is he needs to stay in research.. It’s your body, your heart I didn’t speak up right away and it almost finished me off. Don’t do that. Ask questions speak up if your meds make you feel bad take control and work with your doctor.
if it comes to the point, they mention pacemaker do not be afraid. I was very against one. Now if I could turn back the clock, I would’ve asked for the first week because it made such a difference in my life. This time last year from the previous April, I was unable to walk and had crushing pain in my chest and so much more. My EP has told me people without a fib would do anything to get my test results that I now get. The only problem I’m still having is stamina, but I’m also five years older than when I was diagnosed. The time. Until I found my wonderful doctor was not good for me. On top of that I don’t know why, but I have actually lost 50 pounds since I got my pacemaker And it happened without any crazy diets, etc. so who knows with the heart trouble what is doing inside my body. I’m not a Barbie doll but boy what a difference.
Sorry for the novel I want you to not be afraid, but you are going to be. I would keep a journal if I were you because you are going to find things that trigger you’re a fib believe it or not ice cream will trigger mine. Yes, with a pacemaker you still get a fib and flutter feelings. I only get the atypical flutter now. What the pacemaker does is keep it from damaging your heart. Your heart is in control a fib cannot make your heart do the wrong thing anymore.
I had an ablation just shy of 3 years ago. I have a loop recorder so my doctor will know if I have any irregularities. I have had no issues since that ablation and I am off all meds other than 1 Diltiazem (120) each day. The internet is famous for scaring us with worse case scenarios about nearly everything medically related. I would listen only to the cardiologist and your EP. They are the real experts. Don’t be afraid of an ablation or whatever procedure your doctors recommend. I understand as I was nervous as well about having the ablation which in my experience turned out to be a pretty simple one day procedure. My doctor does not think I will need another procedure, but if I do I will not hesitate. It gave me my life back. Good luck to you. It will be OK.
Everyone's experience with Afib is different. As you go through episodes and recover, you may or may not be able to get a sense of what triggers or brings on the episode. If you can, you may be able to make adjustments that reduce its incidence. If not, you will learn to react calmly to the onset, be aware of how you are feeling, and take meds that are prescribed to help alleviate your racing heart, if needed. You will become alert to indicators, such as pain, breathing difficulties, or light-headediness which require a call to the doctor or an ambulance. You should have some monitoring equipment which lets you check your heart rate and BP, even though they will be erratic. In other words, you need to react more as caretaker for yourself than a helpless victim. You must learn to deal with Afib calmly and confidently, so that you have some sense of control. Your goal is to let it impact your enjoyment of life as little as possible, both during and after Afib events. If your doctor has checked your heart and found it to be healthy, trust that you will get through the occurrence and be fine. Know when it is time to see a doctor if the event has lasted too long, your heart rate is too fast or your discomfort seems too strong.
My point is that Afib requires us to be informed, aware and make medical decisions for ourselves with each event. Unless we go to the hospital, we are the managers of that event.
.As you gain knowledge and experience, you will be less traumatized by the Afib and come to expect to have a good and enjoyable life, with adjustments when necessary.
I wish you well!
Hi Cheryl!
My husband was diagnosed with AF at 47 yrs. He didn’t fit any of the risk groups for AF. It started with an unusual fast rhythm. He has had a cardioversion once when his heart rate was very high and was taking flecainide daily for a few years. However, the AF was intermittent and he was offered cardiac ablation. This was about 7 years ago and was successful for a number of years. The AF came back, but it generally goes back to a normal rhythm with a dose of flecainide. ( he was given amiodarone which lowered his blood pressure and made him feel dreadful , so he stopped taking it.)
However, he has changed his lifestyle quite a bit. No binge drinking, just the odd glass of wine or beer, and he started running regularly. This seems to have helped to reduce the frequency of AF.
He is now 62 , takes 1 blood thinner a day … rivaroxaban , just to make sure he doesn’t get a clot.
At 1st diagnosis, we were terrified, we had a 7 yr old and a 2yr old. We were so worried. However, all is well.
It can feel very frightening, however, things can be managed and you will move forward and live your life .
Hope this helps
Great stuff, never too young to start running, I was 70. Absolutely no doubt on every possible way of measuring, my cardiovascular and respiratory health have dramatically improved. We should all be encouraged to run with a tax break!
Firstly read as much as you can.About AF and about the heart.Remember most people don't come on here every day & say "no AFib & feeling great"They mainly come on here if worried or having probs.I spent 4 years with PAF then switched to persistent in 2 days.2 years persistent.Now almost 1 year NSR.
Had to fight the system & pandemic affect on the NHS for 2 years to get to NSR.
Now in NSR for 11 months.
Only treatment for AF is Diliatazim & anticoagulant.
I have tried to keep fit and lost a little weight.Maybe 20lb.Gone from heavy drinker to virtually zero.
No other major lifestyle changes.
Hope some of this helps.
Hi Cheryl.It's not fun having af that's for sure. I had it for 25 years +, I've given up counting.
I've just had my 5th procedure, not out of the blanking period yet but feel fine.
I have learned to take each day as it comes. Find joy in the smallest of things because anxiety does make things worse and I've had a lot of therapy around my anxiety too.
I've read as much as I can get hold of . But please only read the literature through this site and AF association site.
Make sure you get your needs met. Rest when you need to. Sleep . Watch your diet. For me it was no caffeine, almost no alcohol, no sweeteners, artificial colours. No big meals. Not late at night. Cook from scratch, lots of veggies.
Keep moving when you can. Be in fresh air and sunshine. Be with people you love and love you. Let toxic people go. I moved to get away from toxic neighbours. It was difficult but I knew it was the only way for me (I realise that is not always possible). I need peace and quiet, do you? I need nature, slow walks by the sea. What makes you happy? I need to sing which was not easy in af but my breathing exercises helped me a lot. The joy of singing is immense. What brings you such joy?
I dont tolerate the meds they gave me so on apixaban only. Work with your cardiologist to find what works for you.
A lot of this may sound hippy dippy but it has helped me, even if it was me just thinking I am not a victim to this and I can improve this situation even by a little.
You have people here ready to help you, but if you have a close friend who you can confide in, good. But be true to YOU. I use to do things when I knew I shouldn't/couldn't because I thought folk would judge me. . If they are loved ones show them this site and some of the questions and the literature. They need to understand . If they are not important to you...sod 'em. This is about you not them.
hi Cheryl my AF was diagnosed 31 years ago I’m now 66 and going fine. I’ve had on average one episode every 4-5 years until late 2022. Since then 2 more times the last being September. I’m on low dose metoprolol, the idea is that it suppresses that adrenaline rush that might bring on my AF. Since 2022 I had 3 cardioversions to get me back into Sinus. Prior to that I would self convert with exercise. During all that time I continued to have a normal life exercising daily and still continue to do so, the only difference now that I’ve had a few episodes since 2022 I have given up alcohol aside from a taste of my wife’s wine and only drink decaf coffee. Should it get more frequent I’ll follow up with an EP and go down the ablation path before it becomes regular. Stay positive… everyone is different and there would be many many positive outcomes of which most don’t stay on forums such as this.
I've lived with PAF for as long as I can remember - I'm now 72! I didn't know I had it, of course, but had mentioned palpitations to my GP a few times. He checked me with the stethoscope each time and said everything was normal.
Then he was checking my lungs one time as I had an infection and the PAF happened while he was listening to my chest. He went white! He sat me down and asked me if it had ever happened before. I told him it was something I could always remember happening, even in childhood. It didn't happen often and usually only lasted a moment or two.
He got me an urgent appointment with a cardiologist who got a few tests done and subsequently confirmed PAF. He told me I had a higher risk of stroke and must diligently take the medication he prescribed. This was quite a few years ago and I carried on with my life without taking too much notice of it - just took the meds and got on with things.
In 2021 things started to get worse. I had a few bad attacks that made me feel really unwell. Then my legs started to swell regularly. I was also becoming breathless. I saw my GP (a different one by now) and she advised that if I had an episode that lasted more than 15 minutes, I must go immediately to A&E.
So I followed her advice and had a few panicky trips to the hospital - some in the middle of the night. Of course, by the time I got there, my PR was in normal range again - quite a common feature of PAF!
I was fitted with a 48hr monitor which confirmed that I was in AF more than I wasn't. Meds were changed and I was offered an ablation. It's proved to be a game changer. I have more energy than I've had for years and my legs don't swell any more.
It took quite a few months before I felt the benefit but it certainly seems to have done the trick.
Please don't panic! I'm going to be 73 in May and am enjoying every minute of my life.
xx Moy
I do hope reading all of the replies you have had you can now accept there is life with AF, there are treatments- some work for some people, some of the time, some people get treated and are fine ever after, some people just adjust and live in permanent AF and still thrive.
Knowledge is key - push for assessment and treatment but use the knowledge you have learned. If you come over as an anxious female - you get nowhere - sorry but it’s true! Come over as someone with knowledge asking relevant questions and you are taken seriously. Go start reading on the AFA website - first know your enemy!
You can do this - we will help and support. If you have to, go see an EP (specialist cardiologist) privately - they have more time to talk to you. NHS is SO pressured and AF is considered a chronic condition that you rarely get anywhere fast in UK with current waiting times to see a specialist - but there are treatments - you just need to navigate to one that works for you.
I have found that AF is a net positive, yes really 😁.
For me that is because of the many positives from lifestyle changes and decisions that I implemented (not relying on just Flecainide) and hopefully mean I avoid other longterm chronic issues as I enter my 70's; AF diagnosed 60yo.
So persevere through thick & thin and stay positive for a brighter future!
Hi Cheryl
I completely understand your anxiety about this condition. My PAF (paroxysmal AFib) started just over 2 years ago and I was absolutely terrified for the first year. I have gradually calmed down and generally don't get too anxious about it these days. I manage it currently with PiP Flecainide which has proved very effective. I anticipate moving on to daily Flec as the condition progresses.
I really don't have anything to add to the many really great replies you've received already. I just want to say that, reading the replies, I am filled with gratitude for this forum and the many kind, knowledgeable people on here. You are in safe hands! And life as you know it can continue, I promise. 🙂❤️
Helen
Hi Cheryl and welcome to the club. Lots of good advice here and we've all been in the same boat (omg I have a heart problem I am going to die) , or something like that. It's a shock but once you're through that and read through the info it will become a quality of life thing. Manage your medication, make sure you get to see the right consultant, and be aware of any stroke risk - lookup chads2vasc on the web.I have permanent AF, it's on the go all the time, but I'm fine thanks. Others have paroxysmal AF and get episodes every now and then, I have never had one but I believe they're worse that the situation I'm in
There are 33000 people on this forum,the amount of people with AF is huge, one of the Van Tuleken brothers has it, Biden has it, its really quite popular.
Welcome again, you're amongst friends here.
Gary
Hi Cheryl, welcome to the forum. I no longer have AF. I was diagnosed in October 2022 with persistent AF, had a couple of cardioversions that kept me in normal rhythm for a few days only but long enough to qualify me for an ablation. Meanwhile I payed to see an EP (electrocardiologist) so I had time to get all my questions answered.
I had my ablation October 23 by the same EP (on NHS). This forum has been my lifeline throughout. I know if my AF returns I’ll be ok and this wonderful bunch will be here for me.
But I’m not expecting my AF to return. I’m enjoying my steady heartbeat in the here and now.
Hi Cheryl, I'm 53 and newly diagnosed too. I resonate with exactly how you feel. I had a heart attack 4 years ago and some further issues in September last year. I can constantly feel the flutters just now and they've upped my bisoprolol and put me on apixiban. The range of replies here from longer term Afib sufferers are helpful, realistic and reassuring, so I'm reading them, like you, from the position of newly diagnosed, shocked and terrified of what it all means. Happy to share my journey too and support each other!
Hi Cheryl, I am also on 2.5 Bisoprolol and Edoxaban. Those two drugs are the sentries making sure I am safe. I had one episode in 2017, and that's when I had the diagnosis. At the time my potassium was very low, which was the trigger, and I reverted after a shot of potassium in my tummy. Our heart equates to the engine in a performance car-wrong or poor fuel affects the performance to a great degree! AF can vary from the odd extra beat to someone experiencing the rapid heartbeat continuously-which must be extremely distressing and exhausting. I have had one further episode last November when I had just started on Felodipine for my BP-the cardio wanted to change my meds on which I was doing well, because I also have a treated underactive thyroid, and early breast cancer in 2021, the anti hormone treatment for which has played havoc with all my readings ! Back to A&e and with an extra Biso I reverted on my own. I make sure I take electrolytes each day even though I'm no athlete (78) and take supplements to ensure my minerals and vitamins are optimum. I just get one with my life and don't check my heart rate etc constantly, but do check my BP. My heart I have been told is in good nick too, no plaque or stenosis, so if you've been given the all clear as far as the state of your heart, just accept it as a part of your life and live it! Sorry to waffle on a bit, but to me it's now just another med to add to the daily cocktail! Don't dwell on it any more than you have to!
Hello Cheryl
Most importantly - keep calm and carry on ! (Someone should make that into a slogan!).
Like many I started with a high rev episode and was shot to A&E and diagnosed with AF. Cardiologist pronounced my heart in great condition - simply some mismatched signals causing Paroxysmal AF. 24 hour and 7 day Holter failed to identify what was going on and got an Implanted Loop recorder. The ILR confirmed heart stoppages (yes some of us have high BP and others low BP) and I got a pacemaker (they can help with both high or low HR).
In short - my Paroxysmal progressed to Permanent AF. I keep taking the Bisoprolol and Edoxaban (and minerals/vitamins as mentioned above plus a few other pills) and just carry on.
I was diagnosed AF in 2010 and 80 years young now, and looking forward to another 20.....
I have never had or been offered/encouraged to have Cardioversion or Ablation or Kardia/Smartwatch. I expect my pacemaker to be replaced sometime soon (7-10 years) - and just carry on!!
In short - our journeys are all different - seek and take advice - but do not panic - as you have now heard and read, much of the population have AF and do not even know.... but you do, and while it may need some adjustment it will not stop you.
I have PAF, peripheral Atrial Fibrillation. I read Dr Janjay Gupta on YouTube and I believe those in PAF/AF should be offered an ablation as soon as is practical for best results. I wish I knew this couple yrs ago. I’m booked to have an ablation 20/2, fist treatment, I believe for optimum outcomes you most likely to need 2. The Professor is doing and he’s a Bart’s professor.
Not without some possible side effects but hopefully 🤞🏻
I listen to information and yes there a lot of negative stuff but you have to pick and choose. I understand that PAF/AF it should be done sooner rather that later and this is the problem with NHS, get given drugs without considering the long term outcomes.
Yes I’m paying, told I’d got a 3 month wait in NHS 🤷🏼♀️🤷🏼♀️
I believe that I’m walking a fine line between Permanent
You have most definitely read the wrong information.
I also have anxiety from my heart troubles, so you are similar, it seems. But your doctor needs to reassure you as the "upstairs" of the heart is most unlikely to overly trouble the "downstairs", which is the part that truly matters.
Steve
My afib was diagnosed in 2015 but I am sure I had an episode a year earlier. Unlike most people here I was not worried at all as I wrongly assumed that because both episodes were triggered by an antibiotic I would not get it again as long as I avoided the antibiotic class in question. I I was far more concerned about stopping the drugs the hospital doctors gave me as they made me feel awful. My next episode was after major bowel surgery and again I was not that worried as afib is not uncommon after major surgery. But since then my afib has become more frequent and I did start to get anxious . It is however less symptomatic and I can lead a normal life. Other people have given excellent advice on lifestyle changes to help prevent episodes. But sometimes episodes occur for no apparent reason and if you are anxious then it will feel worse. You need to conquer your anxiety. I have found magnesium supplements helpful . Even before afib I used to get panic attacks sometimes and I have found magnesium supplements have stopped these. I take Apixaban and a tiny dose of Nebivolol. When I have an attack I take a much bigger dose of Nebivolol to bring my heartrate down - cardiologist advised this. There are lots of different treatments for afib and you have to find what suits you. You will find this forum very useful. It has helped me a lot and I read it every day.
I’ll just add my tuppence worth , Diagnosed with Atrial Flutter which was permanent, in 2006 but had it a lot earlier as I use to get tired running down the wing playing football etc . All medication didn’t work only electric shock cardioversion but would return a year or months later . Had an ablation which CURED the atrial flutter but have proxy atrial fibrillation the following ablation was not as successful . I was out of my mind at first reading all the bumf on line and the web wasn’t as varied as these days but eventually learnt to live with it and over the last decade or so treat it like other people treat a headache infact I probably enjoy life even more! Found out along the way many quirky way how I can shorten episodes like going for a walk and having a couple of pints of cold lager ,how lovely, especially in hot weather when on holiday it always comes on when you don’t want it.Now 63 it’s all about making the most of life , I don’t let trivial things get me down maybe it’s something to do with the condition.
Don’t be afraid, be informed. AFIB comes in many flavours, requiring many different approaches to control. I have AFIB, but is thankfully under control because they found the right med to control it. I am very active, work out 3 times a week, and I lead a normal life. You will hear it a 1000 times here. Stroke risk is real, so take the meds they offer.
I was the same as you. I had worked myself up that much I collapsed in my daughters classroom dropping her off at school I had no sleep that night and I was so convinced I was going to die. I called my Cardiologist secretary and told her and she said she would get him to call me back and when he explained about AF my fears went away. He is a lovely man who listens to his patients and in the waiting room he is talked about by grateful patients.
I was first diagnosed with AF just before we were due to go on holiday to the Outer Hebrides. I was quite scared about having AF, and especially of going to remote places with it. But having made sure I had enough medication for the whole trip (as online, the GP practices there said they couldn't guarantee having stock, and advised bringing back up supplies) we had a great trip, and did all the things we wanted to, apart from going to St Kilda, which (as well as being very expensive) would have been hours and hours from medical help.
5 years later, having lived with AF - and much of the time in remission after a cardioversion - if we were prepared to spend £500 between the two of us on a day trip to a remote island, I would do it. I continue to take my "blood thinner" every day, to keep the risk of stroke at bay.
I was in persistent AF for 9 months, then had a successful cardioversion, which lasted 3 years 8 months. I'm due for another cardioversion, just 4 months after going back into AF, and have fingers crossed that it will last a good while again. There are many things that can be done to help - eg ablation is another possibility if cardioversions stop working.
I haven't read all the replies, so you've probably already read that lifestyle can help. You could try Dr John Day's website and book as a good starting point - on triggers to avoid, helpful diet and more
Book:- "The AFib Cure: Get Off Your Medications, Take Control of Your Health, and Add Years to Your Life" waterstones.com/book/the-af...
Website:- drjohnday.com/
and How to get rid of atrial fibrillation once and for all drjohnday.com/get-rid-atria...
It sounds as if you have read just the worst case scenarios. Hope you are reading things in the replies here that help you feel more optimistic.
Gosh, many of us have been there I’m sure; scared, constantly checking our heart rate. As many have said, different people have different outcomes, but properly treated, life may change a little, but you should be able to live a relatively normal life. My experience is twofold. My partner was diagnosed with AF in his 60’s and after 3 ablations it was cured completely though he has been warned it could reoccur., but he is now 75 with only one short period of reoccurrence. I was diagnosed at age 67 and after several Cardioversion and 2 ablations I remained in permanent AF. My consultant decided to go for rate control using digoxin. Now at 73, I lead a relatively normal life, get periods of normal sinus rhythm and the biggest problem is breathlessness exacerbated by my asthma. I would point out I have NO risk factors for AF apart from being an ex-smoker. My partner, on the other hand has several. Just shows you can’t be sure how it will take you, but get the correct treatment for your circumstances and life will still be worth living and not worrying about.
Diagnosed with high rate AFib in September 2015 ( typically 165bpm resting more ) Tried various drugs for 22 months with some success but also having 12 Afib attack s in that time, so I got fed up so spoke to an EP (electrophysiologist - a cardiologist specialising in heart electrical issues) and had a Pulmonary Vein Isololation (PVI) Cryo Ablation ( involves freezing ) . 57.5 years old.
Went into hospital 9:00 am, 31st January 2018 , came home 7:30pm . Stayed in bed 24 hours. Took it easy a few weeks.
Never had Afib since.
I stopped all relaled drugs May 15 2018.
None taken since.
Was fit, healthy with no comorbidities at the time.
So dont WORRY!
Worry is bad for hearts.
Ask questions , read more about it.
But dont assume that anything bad you read will happen to you!
Health Unlocked is great but I suspect a lot of the people treated successfully are not on it anymore.
Note : I am not medically trained. I only know in detail from my experience about me
Happy to answer any questions on that basis.
Best wishes
I was diagnosed with Afib about 6 years ago and, in all likelihood, have had an irregular heartbeat for my entire life. My Cardiologist said to me during my last visit 'you will die with Afib but you will not die of it!'
I try to ignore it - my guess is the blood thinners are the most important thing as they help to prevent strokes. Be positive and enjoy life - you could get run over by a bus tomorrow!
It is scary but taking action helps whether meds.procedures.devices.depends on your case.on.meds.pacemaker.had ablation etc
Dear Cheryl - I have had a fibs 2007. I was 50 years old. what I have learned is the more scared and the more I check my heart on Kardia the more anxious I get and the more a fibs I have. A new Cardiologist recommended. I not check and live my life. I’m now turning 68 and I am on blood thinner because of my age. I have no other comorbidities on the list but because I’ve had some long episodes they highly recommended I get anticoagulated because of stroke possibility which is low for me.
I don’t buy into a fib begets a fib, and we’re gonna get so much worse through the years that many doctors tell us. it may happen in some cases, but don’t psych yourself into that it will definitely happen.
So far I have chosen not to have an ablation. Way too many redos and they have found it is not a stroke preventative. My only reason for doing it would be to get off of blood thinners, but you can’t really get off of them just from an ablation you would need a watchman procedure as well. So if you choose an ab ablation, just be clear about why you’re doing it.
If something happens with the blood thinner, and I can’t be on it, then I would consider both procedures.
Everyone’s experience is different. Fortunately I don’t get very very sick when I have an episode so it wasn’t worth it to me to have surgery at this point. Some people can’t function and are in constant a fib or just get so fearful during an episode that surgery is right for them. I’m not judging anybody just telling you my experience you will find your way it takes a little time to figure it out.
Find a cardiologist who hears you and is understanding of your fears and is knowledgeable. There might be an underlying reason for your a fib, so get blood work and make sure you don’t have an infection or something that would be a cause.
There is a good book out. The title is very misleading because it’s not a book that will give you a cure, but it does have some very good information, it’s called the a fib cure by Dr. John Day and Jared Bunch
I totally understand what you’re going through. I so feel for you. When I’m anxious, it definitely is a trigger so you might listen to a Guided Meditation learn meditation, how to breathe deep down into the belly So you can teach yourself how to relax the body when stressed It will be ok.
Eat well,( lose weight if needed) don’t drink if it is a trigger and take a walk every day. Learn about supplements safe with meds that are good for the heart such as magnesium. And enjoy your life!
Hi Cheryl
Sorry you're faced with this but, if you take a positive approach and don't despair, you can really and truly manage the condition. Many people get years without symptoms as long as they're following what works for them.
I had my first arrhythmia episude when I was 15. I'm now 64 and have a fully active life and look ten years younger than my age because I've had to look after myself! 😉
Afib is very scary at first but a golden rule is - don't panic. Do all you can to be calm if you get an episode. It will pass.
I take a small 1.25 dose of Bisoprolol because any more has a real "dragging" effect on body and mood. Small doses taken at the right time (you'll need to figure out that yourself) are great for rate control so make episodes less likely.
I take Flecainide too and have found it wonderful and try to keep the dose low as possible. But it's great (for me).
Paced exercise like walking, swimming, etc., are much better than high intensity stuff for many who get Afib. Look after yourself if you get an infection, especially flu, Covid, etc., as that increases risk and might lead to a few rough days.
Alcohol can be very relaxing in small doses. For some it's a trigger. For others it interferes with the medication, like Flecainide. I gave it up and am fine with that.
I am in no rush to have an ablation. I feel it's well controlled generally by being careful and listening to my body and picking up tips from groups while getting on with life. It's frustrating but you'll get on top of it despite down days!
Cheryl, strongly recommend getting on YouTube and searching for the channel of Dr Sanjay Gupta, Cardiologist in York, U.K. He has some wonderful, easy to understand videos that take so much anxiety out of all sorts of heart issues. I was terrified when diagnosed with AF 2 years ago. Was put on Apixban anticoagulant pills and Bisoprolol. I had symptoms that were severe - very fast pulse in fibrillation, heart thumping like someone was punching my chest from the inside, exhaustion almost 24/7, couldn't walk 2 metres without triggering AF, confusion, memory loss and anxiety was through the roof. This was all new to me - had only had a couple of short episodes of fast pulse before this time. I hate taking the pills as Bisoprolol has put on weight for me and tires me a great deal. One Cardiologist wanted to put me on statins 'in case you have a heart attack' but I refused due to the side-effects. Currently searching for natural products that I believe act as statins, but always take note of what the Cardio says. It took me the full 2 years to get my memory back and for some of the incredible tiredness and fogged brain to ease, and this gave me hope. I think there's no doubt in my case that the Covid vaccinations (2) I had just a fortnight after my initial diagnosis had more to do with these awful symptoms than anyone wants to admit, especially as my pharmacist told me nobody else of my age taking the medications has had such a severe and long reaction to them. However, one day at a time. I hope to lose weight and find a natural anticoagulant, and lessen the Bisoprolol so that I can get even more 'back to normal'. It's an individual path and you find out what suits you as you go along, but don't give up your medications until your cardio tells you this will be okay. Always be guided by his expertise and definitely get a 2nd opinion if you feel uncomfortable with the 1st. Sanjay also has an email address you can get on his page to write to him and you can also get online or phone consults with him, which I intend to do. He's so much better than any doctor I've yet seen where I live. I know you'll appreciate and be grateful for him once you see how calming his information is. Best wishes.
l’m ‘scared’ or on edge as well. The surprise element is the scary part for me. Just when l think that l have found the answer and it’s gone for good … comes the surprise saying “don’t get so comfortable … l’m still around”. The positive for me is that we are situated very close (5 minutes) from an emergency room and l pop over there and they get me into nsr within thirty minutes … unfortunately, l think that it is a condition that will never say bye bye until we say bye bye … l have had one cardio version which put me into sinus rhythm for close to one year. That was very shortly after first being diagnosed. Best, Jan
I have skipped beats in the day and a night sometimes is that normal they worry me so much
Hi, it depends on the individual but for most people they tend to be benign. I still have ectopic beats all the time (especially noticeable after eating or late evening) but I have learnt to ignore them. As I mentioned in my previous reply, these extra beats (along with Afib) were a bit of problem for me, initially causing a fair about of stress. They may have been there before by heart attack/Afib too but now I am super sensitive.
The root issue was anxiety, which just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high (< 2% but it didn’t feel like it!) and he wasn’t overly concerned but it was affecting my QoL. In his opinion, the anxiety was the catalyst. That’s when I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle.
I still can’t say how the CBT really works and admittedly, I was always a bit sceptical about the whole area - talking therapies/mindfulness but it did help. The sessions covered how to spot unhelpful patterns of thoughts, feelings and behaviours and techniques on how to deal with them (taking to yourself, breathing exercises).
I still have ectopics, even runs of them but they simply just don’t bother me the same. Ok, ignore it, breathe in, carry on (or in bed rollover), my heart is not going to stop. As I mentioned previously , it just breaks the cycle of catastrophic thinking (especially at night ) which descends into anxiety and promotes more ectopics and storms. Yes, there was the sedative for a few months initially but that was a number years ago now and I’m just getting on with things.
If you are worried, make sure you discuss them with your cardiologist and ensure they factored into your treatment plan.
I'm so grateful for all your replies it has made me think its not all negative. I have read the wrong things xx thank you all so much xx
I started my AFIB journey 10 years ago and I was really scared and upset about the diagnosis.? I wasted first 2years frightening myself to near death with Dr Google which didn’t help matters.!!!! It’s very early days for you and there’s a lot of treatment avenues to go down yet.? The early times are the more difficult because of the worry and anxiety.? but as time goes on things will get better and life will improve believe me. I’m still working full time, going on holidays, baby sitting grandkids et etc and life is good.👍 it can be a pain in the bum sometimes yes but there is alot worse things out there that some people are diagnosed with unfortunately.???
All the best Cheryl
Ron.👍
So you go on holiday I'm frightened too now
Had an episode kick off in the departure lounge last summer before a flight to Cyprus, I’d prepared myself for sods law and already told myself it might happen and decided I was not going to let it spoil my holiday. Episode ended mid day the next day while walking along the prom in the sunshine and enjoyed the rest of the two week holiday. I never thought I would have that confidence when first diagnosed, it comes with experience and it will for you. It’s really not as bad as you first think.
Gosh so many replies. Hope they have reassured you a little. I have a very vivid imagination and the first few months after my diagnosis were a bit scary for me. That was 13 years ago. I have the added disadvantage of being a retired nurse!!Every one of us knows that sinking feeling when the heart does a flip, even one canbe unsettling.
As time goes on, you learn what is "normal"for you and it does cause less and less anxiety.
What I find useful is keeping a notebook describing your progress and marking which doctor or nurse said what and when. It gives you a feeling of control which I find helps enormously.
Oh and please remember this is an enormously helpful forum but the majority are here because they have run into problems on the way so you get a somewhat skewed version of how things ( like ablations) pan out .
Sorry for ramble.
I share your fears also , to date I have had very few episodes but it’s the What ifs and the fear of it causes considerable anxiety.. your not alone but it feels that way when you dwell on it…
Hi! Hey! I can understand you feeling that way, but really there are so many of us with positive news about our AFib journeys.
It’s a bit of a roller coaster ride though, but people on this site are amazing and really helpful!
I’ve had six cardioversions (not so scary after the first one!)
Now, I’m just waiting and hoping things will settle down after my ablation in London in October!
One of the toughest things I’ve found though is trying to explain to others about how you haven’t done anything to get AFib, it actually and honestly just happens! 😔😊
I’ve had permanent AF (and leaky valve), for 21 years, now I’m 76. Paroxysmal for many years before, undiagnosed, and when diagnosed no treatment given other beta blockers, digoxin and warfarin. In those early days also couple of times in hospital with very high rate. Last 16years just on warfarin and digoxin. No reassurance about exercise, anxious and fearful to do any until I was 69, threw caution to the wind and started road cycling. Took a year to build up gradually, really fit at 71 going fast and hard until a year or two ago, now easing off a bit and being more sensible, but still going out. Tried to keep this story short ish! Just to give some encouragement to others, valve now more leaky and probably need attention, but apparently would have happened anyway.
Hey Chery.
Right, I'm going to give you a right telling off - before I do welcome to the forum.
Afib won't kill you - don't talk such cr@p. You are a lucky one - sorted and can be dealt with easily. Hold tight and be ready for the ride.
You'll walk it.
Paul
Thank you xx hope I do get sorted and feel better with it all
I was just like you. I thought I had been handed down a death sentence when PAF was confirmed. I was anxious and thought twice about going anywhere, just in case. 30+years on and I'm still here. Try to find the You Tube videos from Sanjay Gupta. He is a cardiologist from York and has short videos on all manner of heart related problems which often reassured me. You will find some lovely people on here, all fellow sufferers, who will be happy to help, so don't be afraid to ask or think your question is silly, nobody will think that. Don't bottle things up, always try to find somebody to talk as stress is not good either. Look after yourself.
TracyAdminPartner
Hello Cheryl, please do not worry alone, AF is not life-threatening. Please contact the Patient Services Team at AF Association: 01789 867502 or info@afa.org.uk to ask any questions you have, we are here to help.
Alternatively, visit: AF Association website to an overview of AF heartrhythmalliance.org/afa
You may find the AF and You booklet helpful to download: heartrhythmalliance.org/afa...
booklet
When I was first diagnosed in emerg with afib there was no time for the emerg doctor to go over details. I was prescribed the appropriate meds and then wait for the referral to a cardiologist. That first day, I went home and googled afib (big mistake). It came up with something like this: "Atrial fibrillation (AF), the most common sustained serious cardiac arrhythmia, is a contributor to population morbidity and mortality. AF carries a 5-fold increased risk to stroke." After reading that, all I could do was wonder when and how soon I was "going to die" and was my will up-to-date.
Going forward after many heart tests and seeing the cardiologist I learned much more that I could do on my own, as well as options -- medications, catheter procedures. Almost everyone with the diagnosis is affected somewhat the same but also is vastly different.
Well, AF is a medical condition, and from that p.o.v, just like any medical condition, there are no positives to having it.😏Yes, AF is progressive. It does get worse.
There is no positive spin to put on that, unfortunately.
And if it was not serious, the drugs used to treat it, and its associated issues like stroke risk, would not be so heavy.
If you are talking about positives for treatment, there are some, but like all treatments, there are contraindications and side-effects to consider.
You may have to kiss a lot of frogs on the drug front before you find one effective, but that is normal.
Discussing your own version of AF with your physicians to understand your own illness as it stands now is key. Then look around at what options there are open to you and what you are prepared to do about it.
There are choices, and you will need to decide on where your comfort zone lies.
Good luck!
Hmmm the OP titled her post "AF and scared all the time", I would love to know how you feel your post has helped an anxious newly diagnosed person? I have remained stable on meds for 13 years. My positive spin is that it led me to acknowledging my long standing anxiety and seek support through talking therapies. In my disease trajectory I have met innumerable helpful people, patients and physicians and in fact being diagnosed was a relief as at least some of my symptoms had an electrical reason!!
Knowledge is power. As others have said on this thread, minimising AF is neither wise nor helpful.Your experience is yours alone.
It is not kind or helpful to tell a new diagnosed person to expect that. Experiences vary so much with AF.
For instance, in contrast to you, I am only 3 years in, paroxysmal, but having AF every day or other day. Drugs are not working, and I have tried the big hitters like Amiodarone. I am currently in Tokyo having surgery to hopefully fix it for good.
My advice is passed on from what people did for me when I first came here - I advised the OP to thoroughly research their own condition, decide on their level of tolerance for drug and treatment regimes offered by their cardiologist, and inform themselves about their own options, so that they can understand and make informed choices that suit them.
With AF, it is a highly personal journey, and nobody can do it for you.
The positive is they are here, on this forum, where information is readily available.
I've been to a and e as watch said my heart rate was 30 to 43 I didn't feel any different but panicked when I checked my phone so scared now I will die as it was so low. Could watch be wrong. Cardiologist said they will do an heart tape for 24 hours. To see what happening but not concerned
Borrowing a quote from Dune, "Fear is the Mind Killer". All the stupid drugs they put me on caused me so many issues and I developed anxiety and even panic attacks. Needless to say, having asthma AND afib whilst having a panic attack is NOT a great combo.
So, from my experience, relax. It will pass. I know that in the moment, it is absolute crazy. Even now, if I get an afib episode, I tend to freak out a bit.
Thing is, if they have checked your heart out and have found nothing morphologically wrong (shape, form, valves, etc.) you should be OK, and if they have found nothing wrong with your blood, you will probably not even need anti-coagulants either (I never did need them).
The best thing you can do is to LET GO of stress. If your partner is stressing you, go away. If it is work, find another job. Take a long holiday. Focus on yourself first and foremost. I have found Chamomile and Linden leaf teas to be great. Spraying Lavander on your pillow at night helps wonders as well.
Keep fit, walk a lot each day, this helps keep a steady rhythm and is good gentle exercise for the heart.
Try to get as much sleep as you can and do NOT feel guilty for sleeping in if you need that extra sleep. SLEEP IS MEDICINE.
If you have doubts, ask your cardio and my personal advice, be careful what you eat/drink. I only drink water, avoid sodas, energy drinks, coffee, green tea, matcha, etc. Avoid alcohol and smoking of course, goes without saying and eat a varied diet, not too much, not too little.
A lot of people get AF due to their gut issues surprisingly, and I read a study where 40% of people with AF also had SIBO or one of the three types of IBS. If you have gut issues, focus on fixing them and your AF will most likely disappear (not a single cardio has ever spoken to me about food, but food is VITAL in understanding your AF, especially if it is an AF without any known cause like mine is).
Hope that helps and we are all here to help you on this sometimes very shitty, journey!
Take care!
AF is progressive, mine if 24/7!!!, but it can be TREATED, and that's the secret. Get to see a good cardiologist/EP. Once you are sorted there is no reason to not live a full and active life. They often don't know the cause, but its very common and you are not on your own
Hi
Once H/R and BP controlled with suitable meds for you, time goes on.
CCB Calcium Channel Blocker added to a low dose of Bisoprolol which is better for AFers, was a God Send prescribed by private Heart Cardiologist.
I have AF persistent and no longer rapid.
If your heart structure is abnormal, you will not be able to have ablations, cardioversions or an anti-rhythmic meds. But then you do not have the risk of the former mentioned procedures.
Follow the way Cardiologists work. Before you see one either public or private you will have an ECG, ECHO and 24hr heart monitor.
Take care and take responsibility of your own health needs.
Best control through meds best. As research and safer procedures surface read, research about yourself.
AF is quite prevalent as we age but mine was due to Thyroid Cancer.
cheri JOY. 75. (NZ). AF diagnosed in Sept 2019 with stroke.
Yon could try cyclic sighing. Supposed to help calm and is scientific. Hard to explain but it is basically take in deep breath through nose then another sharp inhale, then release in a long sigh. Five minutes in total doing thus. Go to tiktok and search cyclic sighing. There is a guided session by Dr Andrew... unfortunately I can't remember his surname but you should get it with that info
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