Hi, I’m not sure how to proceed here. I’m just hoping someone else feels as frustrated as I do. I was told when I was diagnosed with AF over a year ago that I would be able to live a normal life. It wouldn’t impact on me and everything would carry on as usual. I haven’t found that to be true. My irregular heart beat is always there reminding me of my mortality. I don’t have the energy or confidence to engage with life as before. Maybe at 74 years old I shouldn’t expect to feel energetic and confident? Maybe I should just be grateful for the health I have?
Yes, I’ve had conversations with my GP and with the Consultant about this. I get more tablets to take as a result and generally feel worse. Digoxin seems to have helped a bit, but water tablets tied me to the house and the increase in Bisopralol made me extremely lethargic and so cold I couldn’t sleep.
I broached the subject of a catheter ablation which sounds very scary, but would perhaps be a cure? I was shot down in flames by the consultant as a result.
Anyway, I don’t take water tablets or the extra Bisopralol and have decided to put up and shut up from now on. Is it just me, or am I being dismissed because I’m 74? Thanks for reading, 😘
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Probably like the majority of us you are being dismissed because you are a female , it’s well known we don’t get the same attention as the chaps 😠 and the medical profession think we should just shut up complaining.
I was actually discharged from my Consultants list because he couldn’t be bothered to help me anymore and my GP just says because I’ve got several chronic conditions I’m “to complicated” and she can’t help !
I don’t know what the answer is, there are a lot of different meds to try but you need a sympathetic helpful Dr to guide you and when they don’t help we hit a brick wall.
Hi, thank you for your reply. I hadn’t considered the female prejudice! Something to think about. I’ve wondered if going private would help? I worry then that you get procedures unnecessarily but at least female money is as good as male money??!!
You may be lucky going private but money doesn’t necessarily change their attitude to women ( though they aren’t all bad ) I’ve paid and seen some horrible rude Drs who play the neurotic hypochondriac card ! Took over 3 years for a Cardiologist to take me seriously and do the necessary tests which proved I was right all along and there really was a problem !
OMG! I’m so sorry you’ve had these awful experiences. Well done for being determined and persistent. The medical profession can be very intimidating. Just when you are at a very low ebb you have to find the strength to insist they pay attention. I dread to think how many people are overlooked. I’ve had some interesting encounters over the years which has led to me developing a deep mistrust of consultants. A second opinion once saved me from a mastectomy. I’ll try and arrange a second opinion for my present problem. All the best.
Have you seen an Electrophysiologist for an opinion on whether ablation is an option? Also, do you have access to a cardiologist who specializes in arrhythmia?
Yes and yes, I was offered ablation but in the end for various reasons it wasn’t right for me. I had a pacemaker instead, complicated with a few problems going on at once. Other than pacing checks I have no Cardiologist or follow up, he changed my meds and discharged me at the same time, basically told me to go away and stop bothering him !
What an awful experience that I am sure adds a level of frustration and anxiety which are know to trigger A fib. So sorry. Hopefully things will calm down .That said, sometimes , 2nd and 3rd opinion are necessary to find someone who sees and hears you.
Meanwhile tap into all the alternatives complimentary medicine things : meditation (walking meditation very therapeutic), yoga, Tai chi easier on the body, acupuncture, regulate and adjust your diet around known triggers, wind down at night to GET RESTFUL SLEEP! Finally in this summer heat : hydrated, hydrate, hydrate. All the best
see a cardiology consultant privately and tell him your probles and he will check you out nicely. I consulted privately and got the best care so far received from my cardiologist.I got a pacemaker fitted and take bisoprolal 3.75 and flecanide 100, for my AF. So far everything under control and living a normal life. I go to Gym, play badminton, and walking in my spare time.
My reading of your post is that your AF is constant - persistent or permanent. If so, that could be why your consultant wasn't enthusiastic about ablation.
Bisoprolol is well known to cause fatigue in many users - I felt like I was walking through deep mud and was breathless whilst I was taking it. My life improved immensely when I was changed to Nebivolol.
I'm 79, female and have been fortunate in my clinicians - it helps to have questions ready, not be put off and if you don't get an explanation, keep asking the same questions.
But, it sounds as if you could benefit from a change of doctor to someone who will explain things. Do you have a relative or friend who could accompany you to appointments? Two heads and two pairs of ears are helpful in listening and remembering. Don't give up - start with your quality of life -eg the fatigue and try to get that solved with your GP. Once you have your energy back, you can go from there.
Thank you Finvola, wise words indeed! Yes, despite all else quality of life is the most important thing to me. It does seem at times that the ‘cure’ can be worse than the disease! I already take 5mgs of Bisopralol, and seem to tolerate it well. The extra 1.25 just seemed to tip me over the edge. Yesterday I decided not to take it and feel loads livelier! Of course the crazy heartbeat in the night was back, but hey ho!
I’m amazed that pills are prescribed and follow up appointments are way in the future. I don’t see the consultant again until September. He’ll not be best pleased when I confess, but maybe I can suggest Nebivolol instead!
Yes change to Nebivolol I did and it was on Finvola's recommendation several years ago that I did. I was on a high dose of Bisoprolol which gave me nightmares and feeling like death. Good luck.
I don’t think your age has much to do with it. AF is a chronic condition which unfortunately can result in the sort of symptoms you describe. Personally I felt a whole lot better when I stopped taking all the meds which really floored me.
I’ve had 2 ablations, AF returned. My silver bullet was Pacemaker but I seem to be a rarity.
I think it’s totally incorrect to say AF does not impact on your life, of course it does, but it need not stop you enjoying your life if you accept you need to make adjustments.
I don’t travel as much as I used to but still travel. I have a full social life and don’t feel housebound. I think we need to accept that AF does not have a ‘cure’ but that there are treatments which can help without making you feel Zombie like.
I agree that being female is a much bigger factor for being dismissed than age, I don’t know what it is but men do seem to get much more attention whereas women are often dismissed as being anxious or moaners. The only way I found to counter that is to become an expert patient, learn as much as I can and ask awkward questions and be persistent. If you aren’t getting help from your current doctors you could always seek a second opinion but as already stated, you may or may not get any further if your symptoms are due to co-morbidities such as high BP, leaky valances or cardiomyopathy..
If you are taking diuretics it could be for such associated conditions rather than AF so do you know your full medical history and root cause of your AF and the condition of your heart?
Hi CDreamer, thank you for your advice. I am in Afib all the time, but seem to have episodes particularly at night when it’s either worse or I notice it more. I did have a 24hr ECG monitor fitted recently that seemed to indicate the rate is too high. Hence the extra Bisopralol. Both my atria are enlarged and I have 2 leaky valves. Nothing is severe enough to warrant surgery, but I imagine my heart is not very efficient as a result. Perhaps this is the reason I’m not a candidate for ablation? My consultant just said ablation was only performed when medication was ineffective. He didn’t like me saying I had read that an ablation was more likely to be successful if done sooner rather than later. I’m also quite an anxious person and my blood pressure has been on the high side for years. Now my BP is controlled by Ramipril and I think the Bisopralol helps too. Diuretics were prescribed but I couldn’t live my life worrying about needing the toilet all the time so I don’t take them. For a long time I thought my rapid heart beat was just anxiety. I think now I’ve been in AF for much longer than I realised. Lockdown did me no favours at all!
I travel around the country by train or drive to visit friends and family, but I’ve yet to get back in the air. My favourite destinations were Japan and India.
I think you are right about acceptance. That’s a hard one for me!
Thank you for expanding on your condition. It sounds as though your EP was not that good at explaining things and is just quoting NICE guidelines about ablation being only appropriate when meds failed, rather than giving you options. Medication is normally the first option but many of us suffer overwhelming side affects from these medications and certainly Bisoprolol - which incidentally also is used for anxiety and may increase sensations of anxiety.
Certainly the enlarged atria will be a contraindication for ablation which is most successful for younger age groups who have no other conditions. That doesn’t mean your EP is being ageist, just considering that along with your leaky valves (most of us will have some leakage by the time we are in our 70’s) will mean even if ablation put you into NSR, it probably wouldn’t last long and the risks of the procedure would outweigh any possible benefits. And don’t underestimate the recovery time - I’ve had 2 both when I was in my 60’s and the second took me 6-9 months to recover from and exacerbated an unknown, underlying conditions.
Heart rate control is important as fast AF will worsen your other conditions however you might talk to your doctors about changing your meds to see if others were more effective and didn’t make you so tired.
MrJames also made a good point about anti-arrhythmic drugs, they may not be considered appropriate in your case but a drug called Amiodarone has kept my husband in NSR for the last 5 years and so improved his QOL - which at 89 is all he is interested in! All the antiarrythmics are toxic drugs and have to be carefully monitored so I would be cautious as the side affects of Amiodarone in particular, although rare, can be devastating. It’s the choice of devil or deep blue sea I’m afraid.
No easy choices.
I would though suggest you look at managing your anxiety which will raise your BP and your HR and chemically is just as corrosive as the drugs, IMHO. Many of us have adopted practices such as breathing exercises, Yoga, Tai Chi, Mindfulness, singing in a group and found they help enormously as does focussing on what you enjoy. Pleasure releases endorphins which are hormones which cancel the corrosive hormones such as cortisol, noradrenaline etc.
I also find it helps to know, from this forum, that there are others who really struggle with this condition, battling (sometimes it really is a battle) to get to speak to a doctors, getting information and making decisions do keep reading and posting.
Lots of information about drugs and treatments if you haven’t already seen the AFA page
Nonsense. Men don’t whine as much. Doctors are just as dismissive of older men as they are women but we don’t whine; we change doctors. None of us is getting out of this alive. Does your doctor talk to you about living wills and DNR orders? It’s because you’re old not because you have AFIB. Doctors think all old people are going to croak - go figure. I empathize with your problem being old I mean, I pray about everything because I have Faith over Fear. I find comfort among other Christians.
Sorry about how you feel. I don't fully discount the fact your being a woman may play a role with this particular doctor, however I have read similar stories from both men and women.
It's unclear from your post if you're in afib all the time (24/7) or just have sporadic episodes. The amount of afib you have is called your afib burden.
Depending on this burden, the options are lifestyle, medications an ablation. I'm sure by now you've done what you're going to do regarding lifestyle, so that just leaves meds and ablation.
You don't mention taking anti-arrythmic's like Flecainde? For some, these types of drugs have been a blessing.
My suggestion is to find another consultant, private if possible, who will take you more seriously and will explore ALL options, including current drug optimization, adding anti-arrhythmics, or ablation if feasible.
Did your consultant give you specific reasons when they shot the idea down in "flames". Consultants work with us, we don't work for them. It's called shared medical decision making, where the patient's desires are taken seriously. Doesn't mean they will agree with you, but you are owed a detailed explanation.
I'm older than 74 and have in no way given up on feeling better. Just had an ablation 3 months ago.
Keep fighting for your quality of life and find a doctor who will fight with you, not against.
Hi Jim, thank you for your kind words. I’m going to get a second opinion. The consultant I saw said that ablations were performed as a last resort when medication had been ineffective. He obviously found me very tiresome and was very impatient. Perhaps he was having a bad day?
An ablation sounds like a very scary procedure and one that may not have the desired effect but I would like to discuss it and feel it is an option. I’ve always felt that choices are important.
I am in AF all the time with episodes that seem more severe especially at night. I take Bisopralol, digoxin, Ramipril, Apixaban. Also omeprazole, thyroxine and vitamin D. 🙄
I’ll see if I can find someone who can help. Thank you
I developed AF a year ago. I was originally on Bisopralol for about 3 months and I ended up in hospital as I had an episode where my heart rate went over 130. The consultant changed my medication to Sotalol and now I get the occasional episode approx every 3 months but my heart rate is much lower . I’m also on Edoxaban. I feel less tired on this medication.
What I did do was make a private appointment to see the consultant EP a few weeks later . Cost £200 for half an hour but was worth the face to face just to ask more about my AF. He put me on the nhs list for ablation but I feel at present , my AF is not too bad considering what so many members of this group seem to have to put up with. I’m 68 years of age, go to two Aqua sessions a week and trying walking for half an hour a day if I have time. I’ve booked another private appointment for a few weeks time as otherwise l get a telephone appointment with one of his team! I keep this too but it means I’m in contact with them twice a year .
That's very interesting...I am on the list for an ablation and on Sotalol. My episodes come about every 3 to 4 months and at first the heart rate was very fast. The last couple of episodes have been with a heart rate below 100 bpm and lower than that after the first 12 hours (yes, mine last 30 hours plus but then convert). I can carry on now where as before the episodes were very debilitating. My EP still thinks an ablation would be best for me as he says "I will always be waiting for the next episode to strike". I am still unsure but on his waiting list.As a matter of interest what mg of sotalol do you take please? I am on 40mg x 3 daily.
Are your episodes 'regular' and appear without a known trigger?
Thanks for your reply . Interesting to read your experience. I take it morning and evening 60mg each time .
I don’t know my triggers as such but I haven’t drunk alcohol for a year now, drink only decaf drinks now, very very little chocolate, try to eat by 7pm and try (!) to avoid getting stressed. I did eat quite late the last time I had it last week. Lasted for about 5 hours and I seem to have them more at night when I’m in bed.
Same here! Mine seem to come at night and I am sure that's what wakes me several times but don't seem to be able to catch it. I did have one episode though in June when literally something when bump in the night and it woke me up sharply, then the dreaded afib kicked off! You take the same dose of sotalol as me but mine is split into 40mg × 3 a day
I gave up alcohol completely when I was diagnosed 3 years ago and don't have any caffeinated drinks at all, I do like a bit of dark chocolate though, can't give up all my treats.
Afib makes me so anxious, getting afraid to travel now and I love holidays in the sun 🌞
exactly how I feel! My eldest child lives in New Zealand with my grandchild. I feel to anxious to fly there sadly. I’ve just been given an updated quote …an extra £170
I have been offered an ablation for sometime this year but I really am not sure what to do having read about so many peoples experiences. I’ve decided to pay to go and see my EP privately and take a list of questions.
Let me know how you get on. I am in the waiting list but still can't make my mind up whether or not to go through with it. When I am on NSR I think not, then I take a bad attack and think I can't deal with this for the rest of my life.
You don't say whether your consultant is an electrophysiologist (EP). You need to have a consultation with one of these who specialise in treating arrhythmias, your GP can refer you.
My cardiologist ( retired now) although a very nice man was convinced meds were the way to go and we could live very well like that with twice yearly check-ups. This lasted 12 years until I joined this forum and learned about ablations. I talked with my Dr about it and he listened and suggested an EP finally. But I had to bring up the subject and suggest it! I think he was reluctant as generally ablations are not a cure but a respite from Afib so to speak before it comes back. The key is how long it takes to come back - but some people remain Afib free for years. I finally had a Radio Frequency ablation last year and very glad I did! As others have advised try and see a heart " electrician" . It is possible he will agree with your cardiologist due to you being in permanent Afib and other existent pathologies. But techniques are improving all the time so who knows. I definitely think seeing an EP is worth it and if nothing else at least change your cardiologist to someone who discusses with you and not at you dismissively!
It could be that you’re seeing a Cardiologist and not an electrophysiologist? One option could be to pay for a private appointment with an EP. This can be around £200, and could be worth it for a second opinion. Even if they simply recommend different medications, and advise on whether ablation is an option for you.
I was only diagnosed last year, but was lucky to get an ablation fairly quickly - though I think my AF had been going on for a lot longer. (Frustrating as it’s in my family, but never appeared when I asked to be checked out with dizzy spells etc.). Anyway, the ablation lasted just two days and I have been advised that further procedures are not advisable. They really are best done earlier, before it progresses.
I have found that accepting the situation has helped, but so far I am lucky in that 5mg Bisoprolol is controlling the heart rate. (Also on an anticoagulant.) If the rate can’t be controlled, then I’ve been told that Pace & Ablate is the remaining option for me. That means that you become dependent on the pacemaker, but you will find quite a few people on the forum who have felt much better for this. (The ablate part is simpler than an AFIb ablation, and it stops those fibrillating atria from speeding up your heart rate - the pacemaker provides that steady rate.)
If the night time rate is bothering you, it does sometimes feel less obvious if you lie on your right side. I find that helps, and also pushing myself to get out for a decent walk each day and push on up stairs and hills, despite the heavy legs feeling. Though if the rate isn’t well controlled then you will need to get it under control to prevent further damage to your heart. It’s such a vicious circle isn’t it - and leaves us feeling anxious on top of the physical symptoms.
An EP is a cardiologist with at least an extra year’s training in how to ablate (i.e. destroy) rogue cells on areas of the inside of an atrium using a catheter device. This doesn’t necessarily make them any more experts at understanding or treating AF (or faults with the “electrical activity” of the heart) than their non-EP colleagues. In the UK all major hospital cardiology teams have an EP who works with cardiologist colleagues. If anything, their training might make them more inclined to recommend an ablation rather than treat the heart using medication. That might be a good idea but it must be said also that it remains contentious and is not the first line approach in the UK.
Hi Jane, my cardiologist said that ablations were only performed as a last resort when medication has proved ineffective. Maybe it’s a postcode lottery? Naturally he prescribed more pills, Digoxin and a 1.25 increase in Bisopralol. 🙄
Hi Sasha, it’s good to hear that you’re getting a second opinion. Given the very long waiting lists to see an EP (Electrophysiologist) you may want to seek out a private consultation. I have a similar story regarding the initial response to my diagnosis of AF last year. And like you I have persistent AF and notice it more at night. And it’s horrid! In February I was fortunate to attend a talk by an EP attached to both a private and NHS practice locally. From this I learned that general practitioners are often behind the times in this speciality - they can hardly keep up with every advances in medicine! Catheter ablation has become an increasingly safe alternative to medication and where AF is symptomatic ( eg breathlessness, tiredness, feeling heart irregularities etc) it is considered preferable to the medication only route.
I paid for a private consultation with this EP (cost around £250) and had a wonderful half hour in which to explore all the options. I was immediately put on the waiting list for a catheter ablation, with cardioversion as an interim simply because the waiting list for ablation is so long. Unfortunately neither of the cardioversions worked for more than a few days, but the transition between the private consultation and NHS was fine. That was actually my biggest worry. I don’t really agree with private meds and didn’t want to be seen as queue jumping! But everyone was so reassuring. After seeing the private consultant you just get put on the normal waiting list.
You do need to see an expert in this area. There are other options besides ablation such as mini maze which can be more successful for persistent AF. The fact that I have persistent AF and the consultant thinks it’s worth trying ablation is for me a sign of how far this technology has progressed! Unfortunately we have a seven month waiting list here, but if I do want to change my mind I’ve got plenty of time to do so!
Wishing you all the best, let us know how it goes. Jo
I had 3 ablations last year having been in persistent AF for about a decade. Nearly 2 decades of AF. I was surprised and encouraged by their willingness and persistence after 2 failed cardioversions and no joy with meds. 5 months after 3rd ablation and whilst not on any meds I finally went into NSR. The EP and cardiologist were as surprised as me.But here I am 2 months later still in NSR! So pleased they/ we persisted. It was not an easy year but worth it. 😊
Hi Jo, I imagine there are long waiting lists everywhere so I’ll get on with finding an EP. Wish I’d found this site sooner. Thank you for your reply. It’s comforting to know I’m not alone.
glad you asked the question SashaPooch I’m nearly in the same position as you and found the answers to your condition very helpful my GP has reduced my digoxin and upped bisoprolo last week i to am looking to find a private consultant as well
Where in the country do you live? My EP is excellent, and there are 3 EPs at the hospital. University Hospital Coventry and Warwick, good transport links. Glenfield Leicester and Queen Elizabeth Birmingham all have a good reputation. All the consultants do private work and nhs.
You really do need a second,more informed opinion.
Mine is Professor Andre Ng at Glenfield. I pay privately to see him every 6 months bit on his NHS list for ablation, it's a long wait I think. Glenfield is a heart specialist hospital and has a fantastic reputation
I don't know about age but I first had AF at 29 and was definitely dismissed then.Fast forward 2 decades and I have a good cardiologist now who listens, thankfully. But rather a lot of time was wasted that impacted significantly on my heart health.
You could consider the private route for a consult...that's not too costly and then you could consider options based on their view. That might be an ablation or may be a change of meds and a letter to your gp. An ablation, done privately, would be an eye watering amount.
AF does change your life but can be positive, I am grateful to it for changing my lifestyle. Cardiologists vary and their favourite drugs can vary. Don't rule out seeking suggestions from an experienced Alternative Practitioner, they also treat AF and are likely to approach the issue more holistically.
Over 10 years my developing suggestions on this Forum now centre on seeking a hybrid 'cure' ie pills & lifestyle changes. I take 200mgs Flecainide. If that stops working I guess I will go for an ablation.
I'm a 69 year old male and I've recently been dropped from my cardiologist's list because he can't be bothered to treat me anymore. No explanation and no diagnosis other than "you have AF",no information on what I'm supposed to do next. So your being dropped isn't necessarily down to gender prejudice.
I agree with your view. I have afib and cancer. I have been unable to see a NHS consultant for either of these conditions. Oddly enough I have not seen a Gp either. I am supposed to have periodic bloods taken for the cancer, the approach is watch and wait. However these appointments are cancelled. No explanation given but I assume that it is the sheer volume of work. I will get the bloods done privately. I do not think there is a gender bias within the NHS whereby women are victims of discrimination.
In these times we all seem to be receiving a poorer service.
After 3 months of feeling like the living dead, I told the cardiologist to take me off Bisoprolol and put me on Diltiazem. My pharmacist had advised me I was feeling so rough, breathless and lethargic as Bisoprolol attaches to receptors in your lungs as well as your heart.
Cardiologist wasn't too impressed at being told what meds I wanted but he agreed and Diltiazem certainly improved things.
I was diagnosed with paroxysmal afib a little over 2 years ago now, it would’ve been sooner by at least another 12 months or more if the cardiologist listened to me, but he was a jumped up little twerp who thought I was imagining my symptoms & didn’t want to be bothered with “funny feelings” he totally dismissed me & discharged me.
This led me back to my GP to complain & after I sent her an 8 page letter giving her as much detail as possible she got the ball rolling with neurologists & a brain scan thankfully there was no answer there, ffwd 6 months & I had a massive Af attack & ended up blue lighted twice on the same day to hospital where I had the most kindest team looking after me, who diagnosed. Finally I had an answer.
I was referred again to cardio where I told her do not send me to my local hospital send me to an EP which she did thankfully, my EP is the most kindest supportive & lovely dr he listens to me & we make decisions together.
Originally I was on 10mg bisoprolol daily & 100mg of Flecainide to be taken as an when along with my other heart meds & Apixaban 5mg twice a day, after giving the Flec a go I was able to ring & ask if I could go on this daily as I felt it would manage my symptoms so much better, now I take the Flec 100mg twice a day & a 50mg as a just incase my bisoprolol is now down to 2.5mg a day as I was walking around like a zombie with a heart rate to match, my heart rate is still low at 40/45 but better than the 29/30 mark.
I’m now at a stage where my EP is really pleased with how things are going, I’m on a 12 month appointments with him & health wise things are starting to look up.
I’m still very wary about going places or travelling which I’ve not plucked up the courage to do so yet, I probably won’t fly & will stay in the U.K. which is fine, physically my mobility is now also picking up so I’m out to fight the world to get my life back on track & this time I’ll win, I’m only 64 & 100% ready,
I don’t think I’d be where I am today without my EP & im so glad to have found him, he’s restored my faith in the medics & In myself. I’ve never told my story before but I hope it helps you, there are decent medics out there & I really hope you get one 💖
I am around your age (69) and can relate to much of what you describe. I was given also given similar advice and I think this is given with good intention, and not to fob us off. I suspect doctors do this because they try to head off the intense levels of anxiety this condition can easily bring in its wake. Of course, they often fail. AF works its way into our mind like little else. They know that a diagnosis of AF isn't a death sentence, far from it, but that it can easily make us feel like it is, at times. Lack of energy is very much a part of it and I guess it can be a symptom of the condition itself, of the fear it creates, or even of the treatments given: its complex to unravel the cause of this, I have found but having heart issues certainly does knock the confidence for six.
You have been prescribed a diuretic to reduce fluid retention. Did your doctors explain why they gave this since AF doesn't always cause it? I know that diuretics famously can produce a wide range of side effects, as I've seen in a friend. Also, bisoprolol, as you have found, can produce lethargy and cold extremities. There are other beta-blockers or alternatives that can be tried when this happens. Digoxin is a powerful drug that can produce its own side effects, so needs carefully monitoring. I found it to be really helpful, but my anxiety back then was high, too.
I hope you eventually sort out things and feel your old self. I do feel that I have aged since my arrhythmias began. My ablation as for atrial flutter and I met yet need another for my AF, but, luckily so far, bisoprolol seems to be keeping it at bay. Why you were told what you were about an ablation is most odd. Was there no other explanation? Not everyone is a suitable candidate and, in the UK, it is a last resort for various reasons (scarcity of resources and cost), but to be "shot down in flames" seems truly odd.
Twinked med Diltiazem 120mg AM and Bisoprolol 2.5mg PM
= controlled 123/69. was 88-96 H/R Day but 1 year later now 60s H/R Day.
I can't have an ablation as ECHO showed enlarged back chamber.
So if you had an ECG, MRI or ECHO Scan, 24-hr monitor?
And are you AF controlled ? What are your levels?
We are all different. And yes I have had my PapilliaryThyroid Cancer removed. 3 x yearly free neck scans. I take 125mg Synthroid daily. I keep TSH @ 1.0-2.0.
Keep your B12 @ 700. I take 1000ug Solgar 2 days week.
I hope this alerts you to manageyourhealth.
I declined RAI post thyroidectomy and declined suppression. Low Risk, 70, AF heart condition.
I can remember being told that AF wouldnt effect my life at all as well.To be fair fir the 6 yrs that it was quite well controlled with Amioderone, it didnt too much, though I still had bouts and on those times I felt rubbish. I also never felt safe to travel as much, always nervous about flying etc. I think that fur whatever reason, some people are more symptomatic , or at least , feel their symotoms more.
When the Amioderone stopped working, I tried bisoprolol, digoxin, Diltiazem and a couple more but all made me feel ill.
It was a huge decision to make but I finally opted for the pace and ablate and so far so good.
I dont feel my heart fibulating anymore, the pm keeps the beat at a steady resting 70bpm ( I tried 60 after the original 80 but 70 seems to be right for me now).
Im no longer aware that I have AF and can do pretty much everything. I keep having to remind myself that some of the things that get me puffed are more age related rather than anything else.🤣
Its not for everyone but it was definitely the right choice for me.
I see and consult with my ep privately but my procedures are done on the nhs.
I think a second opinion ( private) with a recommended ep, is the way to go fir you. Good luck.
I have been in persistent afib for 2 years now and feel far better than when I was in paroxysmal afib. I take 1.25 bisopropol first thing and 1.25 last thing as agreed with my consultant who is very much in favour of you having an input into your medications. My EP explained that the Bisopropol works for 17 hours. I never notice anything at night and only notice the irregularity during the day if I do too much. I am 77 years old, play golf, cycle although not very far, do gardening and yoga.
If I feel the heart rate is too high I check on my Kardia but except for yesterday when I did too much heavy gardening I haven't used the Kardia for a couple of months.
You are not alone! I was diagnosed with AF finally by the paramedics in the ambulance my local hospital insisted I travel in to the main Gloucester Royal where I spent the worst night of my life before they finally let me go the following afternoon with a pack of Bisoprolol 2.5 to take when my heart went into AF. My doc suggested I take one daily but agreed to let me take half the dose when I pointed out that I was very sensitive to drugs. She didn’t even arrange a follow/up appointment but the pharmacist was concerned and told me to contact him if any problems and arranged to call me in a week to see how I was getting on. As I was feeling increasingly tired, I popped in to see him after three days. He took my pulse and told me to stop taking it as it was brining my heart rate down dangerously and a different doc agreed but nothing else was suggested and I wasn’t referred anywhere either! We found a lovely private EP who at first didn’t think I had it but after I had acquired a smart phone and a Kardia and the app and sent him a reading of my heart having an episode, he sent a prescription for Flecainide to them which I took as a PIP at first (with an added biso only if my heart rate went over 140 twenty minutes after taking 100mg of it. Now I take it am and pm and only have very rare episodes which never last long at all. But do have increased fatigue which is “a common side effect”! I’m 79 and have had paroxysmal AF for four or five years now! Good luck getting sorted!
Hi Sashapooch - if you are considering going private then Dr Ng , an EP, can be found at the Syon clinic in London but also other hospitals and clinics around London. He is the most sympathetic doctor I have ever met. He is gentle and kind and reassuring and at the end of an email and always responds within 12 hours. No matter what time of the day or night I write to him. He has given me back my quality of life and also my mental health by reassuring me that this is not a problem he cannot tackle. Honestly, he wouldn’t dismiss anything you said and he would be just the tonic you are looking for. There’s plenty of life left yet and I felt exactly as you do before I met him.
Wow! I can’t believe how many kind and knowledgeable people have responded to my post. Thank you all! I live near Sheffield and believe there may be electrophysiologists at Thornbury hospital. Haven’t had a chance to do any more at present as now at the dentist. Always something! 😲🙄
Hi Cat, I’ve just made an appointment with a Dr Jonathan Sahu at Thornbury Hospital for August 15. He’s a cardiologist and electrophysiologist. I hope he can help me find a way forward. Many thanks, all the best
That is a lot sooner than waiting for a GP referral. 🙂 and you can always opt to transfer back to NHS after that if you need treatment. Please let us know how you get on and hope you get some answers and action. Best wishes.
I had two leaky valves and had these repaired with open heart surgery at mayo clinic in Rochester Minnesota. While inside my chest they also did a maze procedure cryoablation. That was two years ago with no problems since. Maybe you should check into going private as mentioned. I wish you well.
My Bisoprolol journey began in January 2010 aged 65. In addition my medication was Ramipril and Simvastatin, followed later by the addition of Felodopine - all this was widened to include Bisoprolol and Warfarin. By September 2011 I had identified the onset of an AF event as food/food ingredients. Got bloods done to eliminate IBS and Coeliac Disease. Sorted. Then consulted a Nutritionist.
It been a journey which has been through a number of phases ...... spread over 13 years. The original Cardio Consultant prescribed it to be taken in the morning.
Phase 1 - was random and full flow nose bleeds. My GP then told me to take it at night, nose bleeds stopped .... never had one since. Ever!
Phase 2 - next came the intense coldness of extremeties a regular feature of my life for some months.
Phase 3 - lethargy and weariness ... but not unmanageable. I just picked my moments for activities, and finally,
Phase 4 - now absolute fatigue and tiredness.
Tomorrow I have a telephone consultation with my GP at which time I will ask to abandon Bisoprolol and start Nebivolol in the hope that this may minimise my tiredness. Bisoprolol has done me well once the initial hiccups were out of the way but the tiredness is now a QOL issue now. Changing meds seems to me to be the quickest and least painful way of addressing the tiredness.
Iam now 78, work part time, 30 hours a week driving a College service double decker bus, have all holidays and weekends off and 5 hour breaks during the working day. I am now beginning to experience the ageist thing ..... like what's a 78 year old bloke like you doing driving double deckers when you should be at home with your feet up waiting for god. All very subtle but none the less real. If only these turkeys understood my annual medicals ( eye and general health) that I have to have in order to retain my PCV drivers licence.
Up until the start of CoVid I used to fly to Sydney and Melbourne (where I used to live) for some of my holidays. AF included but it never troubled me.
If you have paroxysmal AF and get bored you could always think about what sort of thing kicks you into AF, thats how I got mine sorted by addressing the triggers. Not always advisable though depending on what type of AF you were diagnosed with.
Anyway, apologies for this being so long - good luck on your journey on the wild side. 😂😂
I’m sorry, but being ignored because of your gender is just very doubtful. But it is important to go to an Electrophysiologist that listens to you and wants to help. Don’t be afraid to get a second opinion IF you have that as an option. But also remember that they might have been telling you that with AFIB, if properly treated, you can live just as long as anyone else. That does not mean it does not affect your lifestyle, it can and often does. You may have to accept the limitations it adds to your life, and learn to appreciate what you have despite the AFIB! But be sure to explore your options for doctors and get one that cares about your well being and doesn’t just blow you off.
I was diagnosed with afib at 50 yoa. For the first 6 years I had no problems. I was taking Metoprolol @ 25 mg. a day. This year, everything changed. I am in Menopause, and I think that has something to do with the change. My Electrophysiologist increased my Metoprolol to 50 mg, twice a day and tried to put me on Flecainide. The Flecainide made my problem much worse, ended up in the emergency room trying to get my heart back in nsr. My heart rate was going from 165 down to 56. It was terrifying. I decided that I would not take the Flecainide. I have done a lot of research and have been changing my diet. I don't like pills, they only cause another side effect. I have incorporated ground Flaxseed and 400 mg. of Magnesium into my daily diet. I also make sure I eat a banana every day, for the potassium. I don't have any caffeine, no chocolate and no artificial sweetners. The artificial sweetners cause me to have PVC's(premature ventricular contractions). I am doing much better now, with no thanks to my doctor. His answer for everything is pills. I don't know if any of this will be helpful, but wanted to share. Really hope things get better for you!
I have found the same. I broke my femur three years ago. They found AF when I was in the hospital. They started giving me pills and my problems started! I was nauseated for the first year. Everyday. My legs hurt, my back hurt. Afraid to stop pills for fear I'd have a heart attack. I started researching patient's reviews on the drugs. Found many people had the same symptoms on this medication. One by one, I requested a change. Lucky for me I had doctors that were willing to oblige. I'm not perfect yet, but the nausea is gone! I feel better now than before I started. I still have a few problems, but nothing compared to before I changed. Each medication is different and what works for me, may not work for you. Research each medication and try changing it, one by one until you can live with the results. It isn't easy but you are the best advocate for your health and body. Good luck!
I totally understand your frustration! At 76 and being female I also share being the recipient of similar attitudes and treatment by the medical profession,,,I became “Miss” Helen to every nurse and I do find condescension is the tone of voice and my visitation notes include Doctor’s comments that I am “oriented to time and space today”! add to it “how are we today?”and I am ready to scream at them,,,I still have my marbles and being 76 /female does not make me an idiot! So my EP has decided I am not interesting enough to rate a yearly visit from him and he has relegated me to my next appt with his nurse,,,my afib is not persistent yet,,,why do I have an EP if I can’t have an appt with him? I have expressed my desire to see the doctor and had to become more forceful verbally to have them understand that this particular EP was why I came to this practice! This is not the same medicine here in the USA that existed years ago,,,it’s almost impossible to get a timely appt when you have an issue you are put out weeks and months to see a doctor,,and then they often move you out further with a call to reschedule,,,forgive my rant,,but I have lost much faith in medicine,,,hang in please and try to remember patience is a virtue! I am trying to maintain my sanity with a measure of constraint and politeness.
I am so sorry Sasha. I know of what you speak. I am 73. I have had Afib for over 20 years. But, until this year it was a short burst here and there unless I was put into either physical or emotional situations. This year it became constant and exhausting. I was prescribed amiodarone and had ablation surgery in June. Three days after the ablation the Afib came back. I had a cardioversion in July and I am back into normal sinus rhythm. I have swelling of my ankles now and it is painful. It is especially painful to walk or stand for any length of time. I was advised by a friend to call my cardiologist ASAP this morning. I am thinking it may be the medication, but I don't know. You are not alone. Keep asking questions.
You might be right about doctors' dismissive attitudes toward females, but I believe that they may stem more from a lack of confidence in their understanding of Afib and ability to treat it successfully. When I first had an incidence of Afib and went to the emergency because I had no idea what was happening, I was surprised by the lack of clarity in explaining my new ailment and outlining the treatments for it. I had no idea whether my heart was weakening and might stop at any moment or would eventually bounce back.
I had a doctor who came in after I had been in emergency room for a couple of hours and asked me whether I wanted to "use the paddles', try a medication or just go home with my new pills and ride it out. I tried to ask questions as to what might happen or what was the best choice. A bit later, a doctor came in and said I had to decide because she "had other people to see!" I had never encountered a medical situation in which I was asked to play doctor before!
I went home and waited it out for 24 hours. I have done that each time since, once for 40 hours. As episodes became more frequent after a couple of years (every two weeks or so), I realized that I had to take charge of dealing with my Afib. I could feel that each episode was triggered by a build up, over a few days, of intestinal gas, and I began exploring the causes of that, eventually finding out that I have celiac disease. I made major changes in my diet - no gluten, alcohol, carbonated drinks, gas-producing vegetables and fruits and limited caffeine. I also found that deep breaths, hydration and avoiding sleep apnea were important defenses. I lost weight (35 lbs) and was able to get off most of the array of BP meds I had been on for years. I also walk and lift weights daily.
I have had one 5-hour Afib episode in the past 8 months. I have been fortunate to find some answers and stay free of Afib so far. Doctors played no role in that success. Even though I told them repeatedly that trapped gas was my main trigger, they ignored me and never suggested seeing a GI doctor. When I did see a GI on my own, she was not interested in discussing a connection between my digestive issues and Afib.
I know that my formula for avoiding Afib may not be relevant to yours, but I encourage all who are dealing with Afib to become the lead investigator and an equal co-participant in their treatments and meds. I am 79 and hoping to enjoy life with my family for some time to come. Don't feel as though you are too old to fight for your health. Make your health your main job and figure out a combination of life-style changes and meds that gives you some relief.
I have had three ablations and the third seems to have fixed most of the problem. I think you need to seek out a new medical team. I much preferred to go through an ablation than live like I was living. My symptoms were much like yours. Do your research and be your own advocate. The ablation itself is not to be feared. I’m 74 and i’m feeling good.
I feel for you and with you. I am a similar age and have been largely asymptomatic for about five years but have recently been having episodes which sometimes take up most of the night and the next day. I feel exhausted. All of the medications prescribed, except the anticoagulant, don’t agree with me.
I see that you also have hypothyroidism: you probably know this often goes hand-in-hand with AF. I’m currently having a big struggle with both and it’s so difficult trying to tease out the different aspects. I don’t have any answers for you. I’m sorry.
It has been interesting reading the replies to this post, so thank you for the initial query. Good luck.
hi. I only have paf. It comes on every 2/3 weeks & it lasts 24 hours. I have no other medical problems and my heart is healthy. I have a low heartbeat and so I cannot take any medications other than apaxiban as a precaution. I was down for an ablation. Then my electrophysist rang me and discharged me ! Said I would be fine and it was only for symptom control anyway. I said I was getting increasing urination whilst in an attack and he said “that’s nothing In the grand scheme of things”. So I am 68 and no treatment whatsoever.
I am a 75 year old female and have permanent AF. It is termed asymptomatic but I certainly do feel much more tired on a regular basis than I used to. I am fairly sure that having AF , rather than my increasing age, is what is making making me extra tired;. I am no medic, but it makes sense if one thinks about the heart not being able to pump regularly and thus being unable to distribute the blood as effectively as our bodies were designed for it to do. I deal with it by having an afternoon siesta which means I can stay up and be alert until the usual midnight hour.
I can't climb mountains or go up huge flights of stairs, but really I am able to live my life in exactly the same way as I did before diagnosis. Take heart!
I was diagnosed in 2015 and have had to change medication several times , at my insistence, to deal with symptoms I did not like. So see your GP .
Discuss medication first! I was on too high a bisoprolol dose and something else and felt the same. Now on edoxoban, rovustatin, and clopidogrel. All low dosage. Feel much better and all under control! Good luck
I am so glad that you've got an appointment with an EP! Here are my recommendations for you before you go to that appointment;
Record:
Get a notebook and begin recording information about how you are feeling on a daily basis.
Take your blood pressure and heart rate each morning (record this too!).
List all of your medications and any side effects you are experiencing.
If you can feel when you are in Afib, try to time it once in a while and, you got it, record this too!
If your Afib seems worse at certain times of day or after exercising or whatever seems to set it off - write it down!
Research:
The internet is an awesome tool but have a care about where you are getting your information. WebMD, PubMed and this site have a lot of useful information but be wary of sites that are trying to sell you a product.
There are several different types of ablations - catheter (cryo and RF), mini-maze (an ablation done on the outside of the heart) and open-heart (though this is usually only done to fix a bigger issue).
~ I've had two RF ablations - the first did not fix all of the AF and uncovered another issue called sick sinus syndrome. A pacemaker was installed to keep my heart rate from bottoming out. The second (4 years later) got most of the AF on the other side of my atria. ~
Alternative/add-on options:
Exercise -
Tai-Chi, walking, gardening, cooking, house-cleaning - really anything low-stress that keeps you moving regularly but doesn't overly tax you is going to help.
Diet -
Natural diuretics include asparagus and watermelon, plus others. If you don't mind having to get up at night, eating these in the evening will definitely help control the amount of water your body is holding.
Other food & drink that seem to set off Afib - you are your own best doctor in this regard. Add a food diary for a couple of weeks and then review it to see if there is any correlation to afib attacks.
Medications:
There are too many to list so I'll just put a few here...
Blood Thinners - this one is the key to staying stroke-free with Afib. Eliquis, Edoxabad, Warfarin, etc. Apparently baby aspirin doesn't do much.
Rate Control - Drugs like Diltiazem slow the heart rate down. They don't stop Afib per se but they make it so the heart isn't beating so fast. Apparently more women are prescribed this type of medication than men. I think Bisprolol is in this category.
Rhythm Control (anti-arrhythmic)- Drugs like Flecainide control the rhythm of the heart and keep it beating correctly. Amiodarone and Metropol are others in this group.
Blood pressure - Again, bisprolol is in this category but so are a number of others that might not also slow down your heart rate. If you truly need a blood pressure med then there are plenty of others. Also, Flecainide can reduce blood pressure.
Questions:
You need to make the most of your appointment time with the EP so while doing your research, write down any lingering issues and questions. For example, do your leaky values not make you a good candidate for an ablation? Bisprolol is not agreeing with you, are there other medications you can try and if so, how long should you try them if they don't seem to help or disagree with you? And then can you call to try something else?
Final thoughts:
Doctors do not have all the answers and each one of us is different. Frankly, a lot of this is trial and error and you need a doctor that is willing to work with you to find the best solution that works for you. DO NOT give up because your life is worth living in the best possible manner you can manage. But you need to take charge of making that happen. Do your homework, keep good records, go into appointments prepared with what is so for you and with a list of pertinent questions. A good doctor will truly appreciate that you are also working on your own behalf to get well.
Thank you for your advice. I sorted out all the info I have from my visits to the hospital yesterday. I regularly monitor my BP and heart rate, so will record that. I’m in constant AF so it’s hard to tell if any food makes it worse. I find walking upstairs and uphill very taxing and I feel exhausted much of the time. That could be due in part to the Bisopralol. I’ll start a diary and go to my appointment as fully prepared as possible. All the best.
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