The new girl : Having after 4 years of trying... - AF Association

AF Association

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The new girl

Saltcoatslass04 profile image

Having after 4 years of trying to convince the medical people that something wasn't right . In April they finally captured and diagnosed AF. I am taking thyroxine, statins ,bisoprolol, apixaban ,vitamain D, and folic acid tablets. I have just turned 65 and feel like a 90 years old . Permanently exhausted, anxious , and angry they have taken so long to believe me that something was wrong. The feeling of not being in control of my body anymore. Can anybody tell me ? Will all these mixed emotions pass as have just been diagnosed or is it just the mixture of medications.. I used to be a fun person ,now just feel a miserable 'old ' woman.

75 Replies
BobD profile image
BobDVolunteer

Sadly your story is not uncommon and it often takes many years to get a diagnosis of AF from GPs. Even more sadly it is usually ladies like you who are not taken seriously by their doctors.

Will things improve? Some for sure but AF is a long journey with lots of detours along the way. That you are anticoagulated (the apixaban ) is great as stroke is the biggest risk from AFand this will reduce any risk.

Knowledge is power so go to AF Association main website and read till you drop and then ask any quesstions here which we will all try to help you with.

Saltcoatslass04 profile image
Saltcoatslass04 in reply to BobD

Thankyou for that. I must admit feel better just knowing other people have had same issues.

Heart nurse who comes to see has told me "How lucky I am to be on axipaban" suppose it's one thing less to stress about not getting a stroke.

If only they could stop the terrifying AF symptoms which still come regularly even though I'm not at work.

Suppose just have to keel calm and keep smiling.

Thankyou Carol

BobD profile image
BobDVolunteer in reply to Saltcoatslass04

And stay well hydrated especially during this warm spell.

Kaz747 profile image
Kaz747 in reply to BobD

I agree Bob. Often women are dismissed by doctors as having anxiety issues and anxiety attacks when, as we know, those flutters in the chest, tiredness and breathlessness have can a very real basis that is not psychological.

BobD profile image
BobDVolunteer in reply to Kaz747

I once read an article by a GP Kaz who suggested that ladies should turn up sans makeup and with dishevelled hair in order to be taken seriously in much the same way that men do.

It's your age,/ hysteria/insert derogatory term here! Thankfully there are more and more lady GPs so this should be a thing of the past. (I have had lady GPs for 17 years now).

Kaz747 profile image
Kaz747 in reply to BobD

I love my GP - she is amazing.

And of course it's always the hormones as well 😉😄.

Desanthony profile image
Desanthony in reply to BobD

Not all female GP's have empathy with female patients either - I get all this from my wife she has had a couple or 3 who were less empathetic than their male colleagues.

How much bisoprolol? There’s an interesting discussion from a couple of days ago healthunlocked.com/afassoci... which might be helpful. Did you feel like this before you got the diagnosis? My impression is not. The aim of medication is to help you feel as much like your real age as possible so after giving it a trial for a reasonable time you should say if it’s not doing that. The medication I’m on can make you feel awful for a week or so but after that (assuming you adjust to it) you feel much better.

I gave up trying to convince my GP I had a problem after he inquired if I was suffering from stress or anxiety. Annoyingly he already knew I had a tendency to AF because I had been in hospital with AF some years before when I had a virus. Unfortunately it seems GPs don’t know as much as they should about PAF unless they’ve got it themselves!

Best wishes 💜

It seems crazy that so many people are out there with similar symptoms that are at times are so debilitating and the doctors make you feel like you are making a fuss about nothing. It is so wrong.I have been on 1.5mg for couple of years as I have a floppy heart valve. They increased the dose to 2.5mg when diagnoses was given to for AF.

I read the discussion piece you suggested. It has raised more questions a

Will read more. Thankyou

Ask to be referred to an EP (electrophysiologist). They are the experts in arrhythmias. There are other meds apart from bisoprolol.

Check out ablation. I had one in 2013 when I was 63 and it stopped the af and I am still largely free if it.

Maggimunro profile image
Maggimunro in reply to Dodie117

Sound advice Dodie. An EP (electro physiologist) is the one one who will take your arrhythmia seriously . An EP is a specialist cardiologist.

Ppiman profile image
Ppiman in reply to Maggimunro

In the UK, a least, all cardiologists take arrhythmia seriously. I find it hard to believe this isn't the case everywhere, but it is oft said so it could well be true. The characterisation of one being a "plumber" and the other an "electrician" seems somewhat fanciful to me since, if an ablation would be safe and helpful, it will always be considered, whether or not the examining cardiologist is trained in electrophysiology.

Steve

Maggimunro profile image
Maggimunro in reply to Ppiman

My personal experience with 2 cardiologists and 2 EP’s would make me beg to differ with your statement ‘That all cardiologists in the UK take arrhythmias seriously’’ , since both cardiologists suggested it was all in my head.

Ppiman profile image
Ppiman in reply to Maggimunro

Was it in the UK that you saw these four specialists? I guess, also, your GP, missed the arrhythmia, bringing it to five doctors who failed you? That must have been deeply frustrating. It's clear that individual experiences can be poor and that, for various reasons, the system is far from perfect.

Despite its imperfections, however, and I'm currently struggling with what seems to me to be poor doctoring myself, I retain the highest regard for medics with their extensive training and experience. It's a fact that we'd be nowhere without them.

Steve

Maggimunro profile image
Maggimunro in reply to Ppiman

Yes it was in the UK and at a ‘centre of excellence’ no less.

Auriculaire profile image
Auriculaire in reply to Ppiman

Re Maggimunro's reply. It is a pity you can't spend some time as a woman Steve. Then maybe you wouldn't make these blanket statements you are so fond of.

Ppiman profile image
Ppiman in reply to Auriculaire

Oh dear, I'm sorry if I sounded insensitive. I didn't mean that to be the case. I was referring to a specific thing, and not offering a "blanket" view. I can see why it came across that way, though. It's true that I tend to respect doctors and medical systems very highly in general, since they are the best we have and vital to our wellbeing, yet I realise that there are human weaknesses, of course. I still very much doubt that there are cardiologists who don't take heart arrhythmias seriously - which was the specific point I was making.

I've spent the last eight months myself struggling with a still unresolved diagnosis for a cardiac / gastric issue. I can't think that, had I been female, my experience would have been different but from what you say, it might. It doesn't alter my respect for doctors - perhaps it should! ;-)

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

Sorry to chastise you! You have said often here that you suffer from health anxiety / anxiety in general. I think that not being able to get to the bottom of why one feels bad or has certain symptoms makes this worse. The problem is that many women are simply dismissed by doctors as being anxious ( or hypochondriacs ) whether they are or not. They get told their symptoms are in their head or to bugger off and live with it - often standard response to anything to do with periods or menopause. The average time for a diagnosis of endometriosis is 7 years! When I go to my GP it is for a diagnosis but not necessarily a treatment. When I know what is wrong I decide whether to treat it at all / try lifestyle changes or supplements or take the doc's treatment( which I have to say given past experience I usually look suspiciously at) . My present GP is pretty good at diagnosis - he listens properly too. But I am 69 and most of my life I have not had such good GPs.

Bawdy profile image
Bawdy in reply to Auriculaire

Whew, memories, ongoing ones. Being a woman for me has been as a dismissed human being .I'm now 77 and I suppose I should be rejoicing I'm still alive but my God, what a battle to be heard and believed. Briefly, 6 years searching all avenues to get sorted, I was diagnosed with vulva cancer at 45 , then mutilation, I must say I was seeing top gynaecologists ,33 years on I'm alive as I now have a great team who care for me. Same with my arthritis and my heart, I was told I didn't seem to "fit the bill" not overweight etc, so I daresay wasn't taken seriously. I want a diagnosis and then I will be happy, I may not follow the rules but I want the best QOL that I can have. Being a woman shouldn't be this hard, my husband has AF and was diagnosed immediately! That's life.

Auriculaire profile image
Auriculaire in reply to Bawdy

I am very bolshy now about my health as "following doctor's orders" gave me asthma ( reaction to desensitising jabs from allergies that gave me a runny nose but not wheezing) and Fluoroquinolone toxicity - this has really buggered up my health. I do not accept what the doctor says without doing my own research . I am capable of reading research papers ( most GPs only read the abstracts if they bother at all) and reckon I am as well if not better educated about the conditions I suffer from as my doctor.

In the USA here Drs have the American Medical Association journal. It is supposed to be read by all Drs in order to keep up with anything new happening in the medical world from meds to surgery or whatever. Most of them I don't believe bother to read it. If they did, they might actually learn something. And that something might just help some of their patients. 😒 And yes it is true women are basically hysterical anxious beings to most male Drs. And even to some female Drs. To me it's a cop out Drs use so they don't have to bother trying to find out what's actually wrong.

Take care and be safe.

Ppiman profile image
Ppiman in reply to Auriculaire

I’ve never had a bad GP and have worked alongside many doctors - all well educated, clever and trustworthy. As for endometriosis, well, I think you’ve hit on a difficult one to diagnose? Lower GI issues in general get a few questions then put down to IBS in my experience. There’s not much can be done for any of them, sadly. The arrival of cimetidine, then ranitidine and now the PPI drugs at last gave doctors something to give out for gastric issues other than antacids or Gaviscon!

Steve

BobD profile image
BobDVolunteer in reply to Ppiman

Sadly Steve there are still plenty of old school cardiologists here in UK who consider EPs as witch doctors and not to be considered.

belindalore profile image
belindalore in reply to Ppiman

You should come live in the USA and see what a mess our healthcare system has become. It would really open your eyes.

Ppiman profile image
Ppiman in reply to belindalore

I have a couple of American friends. It seems a patchy system of care but they seem to be doing well, with one very reliant on health care now, sadly. Over here, it can be patchy, too, but there is a rather good baseline standard, I would say.

Steve

belindalore profile image
belindalore in reply to Ppiman

Sorry to hear about your friend. Hope he/she is doing as well as possible.Here in the USA your care depends mostly on the type of medical insurance you can afford. So the saying goes- "you get what you pay for" or within the healthcare system, what you can afford. The healthcare system here is definitely not equal for all. Many people don't know or remember when the Medicare system was put in place for the elderly here. It was supposed to be equal and same care for all on it. Then it became privatized and now it's profit- driven, by a zillion (sarcastic) different insurance companies. You are bombarded with commercials on TV from all these insurance companies telling you how wonderful their insurance is and you should buy into it. I'm not saying there still isn't good care and good Drs here but the good Drs can't really doctor like they used to because the insurance companies make the treatment decisions. The insurance companies decide what meds you should take. Even though your Dr prescribes you a certain medication, the insurance company has to approve it. And then the insurance company may decide the patient can take some cheaper medicine that doesn't work and the patient and Dr have to fight with the insurance company to change it. So there's one example of profit over patient here. I look at the medical system here anymore as a comedy of errors. Only it's no comedy when a patient gets worse health instead of better health because the insurance companies think they can do the doctoring too. 😒

But reading the posts here, I see no matter where one may live, there are always faults in the healthcare systems. Poor care, poor Drs. With the pandemic people have to wait for care. This morning I saw on the news that some hospitals around the country are starting to put some surgeries on hold again. And I see things getting bad again in the UK and other countries. I know we all wonder if it will ever end. I suppose somehow we all have to support one another through all this. Pray if you have faith and be blessed when we wake up in the morning that we have another day.

Take care and be safe. And thank you for your reply. And allowing me to reply to you.

Ppiman profile image
Ppiman in reply to belindalore

It’s always interesting to read your posts Belinda (I’m guessing at your name). Thank you for taking the time to reply so fully.

I’ve heard that the Scandinavian countries seem to have health care better sorted overall and yet Sweden’s response to covid left many of their elderly to die.

The news today from America was very interesting - over 99% of deaths (which, I gather, is very many thousands…) since May have been in the many who remain unvaccinated. It seems some states have large numbers who are still prone to the deadly form of covid thanks to anti-vax misinformation. We have the same here, of course, but far fewer are being influenced, it appears (my brother is among them, though, sadly and worryingly, since I believe we’re all likely to get the illness at some point).

Steve

belindalore profile image
belindalore in reply to Ppiman

Yes it was odd that Sweden took the approach to the virus that they did. Was it that they didn't think it would be so serious? I don't know. I do know here in the USA politics play a big part in dealing with the pandemic. Democratic politicians said they would not get the vaccine brought about while Trump was still in office. Only because of their hatred of the man. Then as soon as the democrats won the election they have been getting the vaccines and tried to take credit for getting the ball rolling to get them produced fast. When all that was done way before Trump left office. I've not seen such hatred and vindictiveness that has come from these democratic politicians since they have taken over the administration. And a few of the Republicans are as bad. We legal citizens are told to vaccinate, wear masks and self distance as this administration opened the southern border back up to the illegals who are coming in infected with the virus and being allowed to go wherever they want in the country spreading the virus even more. The democrats have lost control of the country. I don't know what you hear of the news here being reported in your country but I'm pretty sure there's much not being reported about how poorly the democrats are managing this country. And it's just plain scary. Riots. Looting. Statues being torn down. Do you know that in California people can steal anything they want from a store and as long as it's not over $950, and they won't be prosecuted? These thieves walk into a store and shoplift just as if you or I would go to shop. Only they don't pay. Everything in this country is upside down. Sorry I got off subject. If you across the pond want to know what's really going on in the USA don't go to CNN or MSNBC. Those stations are too biased. If you want the truth go to Fox news.

Now we are going to have mandated mask wearing again. The Delta variant is spreading. And cases of the Lamda (?) variant have also popped up here. And someone who went to Nigeria brought back money pox and it is also being monitored.

Yes many unvaccinated are still getting the virus. But here it's been reported there have been many, many cases of those who have been vaccinated that are still getting the virus. The majority of those people don't have serious illness. But a few have. One lady has multiple sclerosis and was vaccinated and still got the virus and she's having a hard time. But some healthy people who are vaccinated and are getting the virus have ended up in the hospital. So it's still a lot of unknowns as to just how well the vaccines will work. My former Dr told me before I switched to another Dr that she wasn't getting the vaccine because of the unknowns. I don't know if she ever got vaccinated or not. Some people cannot get the vaccine because a certain illness they may have prevents them from getting it. If someone's immune system is compromised they are told not to get it. Some people with certain religious beliefs don't get the vaccines. So there are other reasons why some aren't getting the vaccines. It's a dilemma. I don't believe in forcing someone to get the vaccines. It's their right to choose. So I guess it boils down to the survival of the fittest. And yes as you said we may all end up getting it at one point or another. And who knows when another virus comes about. Because I don't believe that this virus was unintentional. If anyone understands the mindset of China, how vile and evil the leaders of that country have been, how Xi wants China to be the supreme world power, they would understand the virus never came from the wet markets. There's much coming out about Fauci and his dealings with the Wuhan lab but the present administration is trying to hush it up and any investigating stifled. There's a lot of corruption in this country in big tech and Fauci and a lot of the cronies in our government would have much too lose if the truth is let out. It's despicable and disgusting what goes on in the government. This country is heading for oblivion. And even though the world knows how vile China is, most countries are still importing the products from them. President Clinton was a fool to think China would ever play fair.

With that I wish you the best. Take care of yourself and your loved ones. The world is changing. But it's nice to get on this forum knowing that the people here still care for others.💖

Ppiman profile image
Ppiman in reply to belindalore

Thank you again. I can’t trust Fox News, but nor do I trust the others you mention. My two OK friends took the pandemic mightily seriously. They are Democrats through and through but I can easily see why Trump got votes from much of what I read on their FB posts.

Over here we have the same kind of split in society. It’s strange that it’s happened and I put the blame on social media and its “echo chamber” style of “debating”.

I’ve never been partisan and just can’t accept that it’s a sensible thing to be. To me, to be blind to faux Liberalism is as unintelligent as to be blind to being overly conservative. Lines have to be drawn, for sure, since no man is an island, but those lines are all over the place just now.

Politics, eh?

Good talking to you, as ever!

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

Best to avoid social media. It's toxic. I still can't get my head round this new job of "influencer" and how well paid it apparently can be!

Ppiman profile image
Ppiman in reply to Auriculaire

Isn't this web site a form of "social media"? ;-) But I do agree with you - entirely. Sometimes I think society is on a race to the bottom with discernment (along with modesty and dignity...) on its way out! Strangely my son, half my age, agrees - so it's not just an age-related disorder! ;-)

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

I suppose you could at a stretch class the website as a sort of social media - posts often digress into non health related matters and many "oldies" have maybe met in person at patient days . I am reading an old (2019) article in the Guardian at the moment that might interest you. As a technophobe I cannot give a link ( shameful I know ) but it is by Gabrielle Jackson and is titled The F emale Problem : how male bias in medical trials ruined women's health. The real shocker is that it claims that male animals only are still used in preclinicals

Ppiman profile image
Ppiman in reply to Auriculaire

The article was very interesting and the writer makes several good points but, overall (and indeed from the outset), it is presented more as a polemic. For example, presenting the past as if it were still wholly relevant to today's world is a journalistic bit of trickery and doesn't impress me. I can't imagine that doctors still view women in some of the ways stated and implied, or at least to the degree this writer insists is true. Partly, I would think, this is because there are so many females in medicine and many, too, at our medical training colleges.

But, I might be wrong. I certainly think that patriarchy is still very prevalent in society. Having spent some time dealing with the public, however, I soon became aware that emotion rules the mind far more often than I ever could have imagined. Irrationality is more the norm than the exception. I truly have often wondered where some people's educations stopped.

Another aspect of medicine that makes this kind of thing difficult to measure is that doctors have to respond to individuals who are often stressed and anxious, and they do so in private leaving no evidence of what actually goes on in the consultation. On the other side, some doctors (if not many - who knows?) are still treated reverentially and in ways that bloats their egos and brings them to deal with people - men and women - in ways that are, essentially, unprofessional. It is not only doctors that this affects. I've often thought the same of our current government ministers.

Steve

Auriculaire profile image
Auriculaire in reply to Ppiman

It is true that there are many female doctors now but as you ascend the medical hierarchies the percentage diminishes. This is partly because in order to make consultant a woman has to either forgo having a family or juggle work and family commitments to an extent that very few men have to do. It will only be when (if) women reach parity or become a majority at the top of the medical tree that attitudes will start to change substantially. I am sure they have changed a little - but nowhere near enough yet. As I have said before - pity you can't spend some time as a woman : it would improve your imagination.

Ppiman profile image
Ppiman in reply to Auriculaire

It would give me a different perspective but I am not so convinced that the world is as bad as you paint it - or at least, that there is more than one side to the story.

Steve

belindalore profile image
belindalore in reply to Ppiman

I think a lot of people took the vaccine seriously on both sides here. And there are those that can't take it for other health reasons and those who just aren't. And hope those who can't or won't try to stay safe. As I said a lot of politics created problems. And it shouldn't have. People should forget about politics when something like this pandemic happens. People are who they are and will do what they do. It's funny I was never interested in politics when I was younger. Then when I did become interested I wish I hadn't. Even more so now. Lol. Politics can make people turn ugly in so many ways. So you're right the lines are all over the place all over the world. Maybe someday things will be right....

Though we don't agree on some issues, Steve, isn't it nice that we can have a good conversation and not "walk away" mad at one another because of our differences. 😊 Just think how much better the world could be if everyone could do that. Such a big "if" huh.

Take care and be safe. It is 6:10 p.m. here in Florida. Time for me to have my evening meal. It's been storming out all day. Thunder and lightning. But just light rain so far. I just told my friend who left last night to go back to Wisconsin that it seems the earth is mad at us humans and wishes we'd go away. 😒

Bye bye for now.

Ppiman profile image
Ppiman in reply to belindalore

Lovely chatting! I've only been to Florida once, to Fort Lauderdale. I was lucky (it was a business trip) to get to see the wonderful Everglades. The memories have stuck with me always.

Steve

belindalore profile image
belindalore in reply to Ppiman

Yes it's quite something there. You probably were able to see some alligators? Scary creatures. People have to be very wary of them. Florida is tropical and there are beautiful plants and flowers and birds. It's true that when it rains here plants will grow inches overnight. Which also means the grass has to be mowed more frequently. 😝 Nice you had a memorable visit. Memories are a good thing.... Take care. Belinda

I am in the US, and I really object to this post being so politically biased. I thought that this forum was free from politics.

momist profile image
momist in reply to Ppiman

Sorry Ppiman, I can't agree with you there. Although I would not judge all cardiologist from one experience, my one and only encounter with a cardiology 'team' gave me the impression that they in particular were all 'plumbers' who took no notice whatsoever of PAF. I then asked my GP for a referral to an EP and have never seen a 'standard' cardiologist since.

EDIT: Sorry for the very late response.

Ppiman profile image
Ppiman in reply to momist

From what I read on the Facebook forum, many in the US would be on your side, too. My experience is limited, naturally, but I can’t understand why any cardiologist would not take an arrhythmia seriously.

Whether or not to ablate isn’t really cut and dried, or at least each patient’s individual case needs to be weighed up, and, I suppose, one risk of seeing an EP is that they are clearly going to push for ablation.

Steve

What I have learned over my AF journey: stay in control, talk to more than one heart specialist and/or Alternative Practitioner until you are happy, pay privately to avoid anxiety from delay with more time for questions and don't be fobbed off. I think it would be fair to say that most here have been through the mill and emerged with a reasonable QOL....so do persevere.

Poochmom profile image
Poochmom in reply to secondtry

In my experience, here in the US it is the same with cardiologists. I am on my third one, finally an EP as my last cardiologist had no clue in my treatment and frankly I feel as if I was dismissed. I was put on Flecainide as the result of a holter which I had never had those arrhythmias types before or after the holter. I took the Flecainide one time and immediately got 24/7 arrhythmias. I contacted her because that wasn’t right and she told me to keep taking it. Well I did for another day and again continued constant arrhythmia. I stopped taking it and haven’t had an arrhythmia like that since. Hence my search fir a new one which I met with the other day and is much much better. He told me to use Flec as PIP if I get another arrhythmia. My point is doesn’t matter what healthcare system there are good docs and not so good. It really is a case of being my own advocate.

My wife had a similar experience of being fobbed off by her GP for years. At least now the GP has accepted you have PAF you are on the right path. According to the recently published NICE guidelines the GP should follow, as the meds have not provided a satisfactory QoL you should push further for further investigations by a cardiologist or EP.

I can fully empathise with how you are feeling. Initially I had a similar experience with my GP. My PAF was finally caught after a trip to A & E with rapid and “all over the place heartbeat” for a few hours. I opted to see a cardiologist privately and it was worth every penny. Then I came across this site and it was such a relief to see that I wasn’t alone with my diagnosis and anxieties. “A trouble shared” has never been so true. You are far from alone with your feelings. You will learn to manage this condition with the help of your cardiologist and this brilliant friendly and informative site. Chin up- you certainly are not alone. I am now seeing my cardiologist and his team on the NHS.

Yes! Thankyou I had a more peaceful sleep last night knowing I have not been going mad. My partner as I said has suffered also watching my health suffer and he also has felt so helpless.

Think it's just everything about my life has changed, From suffering this condition for so long and being fobbed off, To now knowing there are more people out there with the same experiences.

There is a huge weight lifted off my chest (wish it would lift off every where else 😁)

Thankyou again everyone

I now have this new energy brewing within.

Might even try a small jaunt out today.

Sorry to hear you have had a frustrating and worrying journey to your diagnosis. I am a similar age to you and for a while I felt my previously active life was destined to change. Various treatments and procedures later I feel I am back on track. I found Bisoprolol definitely clipped my wings and was eventually switched to another med. Good luck with everything, hope you get a good specialist to support you.

Windlepoons profile image
Windlepoons in reply to Bonnie58

Exactly what I was going to say. Bisoprolol knocked me for six.🤔

It took years for my GP to send me for an holter monitor to test my heart. He fobbed me off with anxiety and Hyperchondriasis and other mental diagnosis’s . I too was angry at first but once diagnosed with afib there was too much going on to be angry for long, I was praying the new meds would work and wanted so much to feel better. Hopefully now you can move forward and try to control your AF. Anger will only make it worse as it is a form of stress. Relax and be in control of yourself. Look forward not back. Good luck x

I feel for you! For various reasons my old age has been hijacked by ailments and restrictions. As others say, push for a referral to a good cardiology team. Given you have had a floppy valve diagnosed, sounds like you may already be known to them? It helps to find an up to date cardiologist/EP, best found in a good teaching hospital. I was very lucky, despite Covid, the NHS came up trumps. I initially sought a rapid private referral but chose in the dark and the resulting consultations proved to be a bit out of date. It is a lottery with waiting lists at present. I hope you can find some fun and solace, have a loud scream and get a hug!

Hi there, welcome to the club! One I'm sure that you'd rather not be in. I think what you're feeling is pretty common. I had my first rather dramatic encounter with AF while on holiday on Crete. On return i was put on various meds and sent for an MRI, where it was found that I also had a floppy mitral valve and hypertrophic cardiomyopathy!. I was 60 at the time. 7 yrs on and it's been an up and down ride. My main wish is that I'd spoken to someone about my fears and the anxiety that it bought on. A few years later, I was diagnosed with health anxiety and PTSD. I found it so scary everytime I had a bad attack....its your heart ...right!?.I had some CBT and felt much more able to cope with it all. This forum really helps and it's good to hear others who know how you're feeling and that it's more common than you think. Now that you have a diagnosis, as others have said make sure that you find yourself a good EP. I couldnt function properly on Bisoprolol ,like you it zapped me of all my energy and I was switched to Diltiazem, which suits me better. Everything that you're experiencing is common and my advice would be A) talk to someone if your anxiety gets too much and B) get a good EP. Best wishes

I was wondering whether the other issues you touched upon been discounted as possible causes, such as the thyroid and heart valve? Also, have you had an echo-cardiogram or stress MRI to reveal how efficiently the heart is pumping and any structural issues? I know from my own experience just how tangled a web arrythmias, treatment and anxiety are and I, for one, cannot untangle them to be sure what is causing what. I'm no longer convinced that the bisoprolol made me feel so weak, for example, but there was a time I was convinced it absolutely did.

In my own experience, time and knowledge are big healers. The ability to say to myself, "You've had this before, you know what it is, you won't die from it, and it will go away!" helps to drive away fear.

Steve

I was diagnosed in Jan and yes felt everything that you do. Time will help and I do feel a bit more relaxed about it now. Got my first NHS cardio appointment next week but I paid for 3 private appointments to get me somewhere. Covid once again taking over the hospitals and things are getting cancelled yet again. Best wishes.

Hi Saltcoatslass I am the same age as you and was diagnosed with AF and SVT about 5 years ago after several random falls which turned out to be momentary black outs. In my experience you have to be a patient patient! Take the drugs combination for at least 4-6 weeks before deciding whether they agree with you or not. Bisoporal was not for me I felt I was swimming in glue but a change to Atenolol worked for me. As Bob always says it’s all about quality of life you may just have to adjust your expectations. I have had an ablation and numerous drug combinations and all is not perfect but I have made some life style changes, lost weight and become a bit kinder to myself. My reward has been a better life full of new fun things to do. I still cycle about 75 miles a week but now with an electric bike. I still meet friends for lunch but now we have a walk and a picnic rather than just sitting in a restaurant. I have swapped activities so I always have something nice to do even I’m not feeling great. Take care and believe us that there is still a good life even with AF - no need to be a grumpy old woman quite yet!

I'm 66 and have gone through the feeling 90 stage too. After five years of AF I now cope much better mentally and physically than I did at first. I get through the episodes at home nowadays instead of stress laden visits to A&E. Having learnt a huge amount from the folks here I don't go into panic mode nowadays. Thank you all.☺️I have been in AF since 3am this morning but it's calming down gradually. Once you get meds that suit you, which you will eventually, things will settle and life will improve. As Ppiman said I bear in mind that it won't kill me and bat on regardless with a few alterations to my lifestyle.

Hope you get the meds sorted soon. I ran the gamut of four similar types of drugs (including bisoprolol which gave me old lady syndrome lol) and finally ended up on Sotalol which suits me. I wish you well.😊

Getting you on meds is a good start, but it can take a little while to get a mix that works for you - if you do not start feeling better, go back to your doctor and be a nuisance if necessary. (I found being able to tell them what was working and what wasn't was the start of me controlling the situation rather than AF being something that had happened to me, and that helped a lot.)

Good luck!

Hello to you, I feel for you as awoke today feeling really miserable and close to tears until I remember I am 81 ,was diagnosed with af at 63, and here I am still going on and yes you will adjust it takes time but be prepared for having off days.A lot of changes have occurred during the years and I can honestly say there are a few days when you can forget what you have wrong and appreciate what you have right. It’s a bit scary when you are a new a/fibber but there are lots of us.

One person on this forum gave me some good advice which is ,you don’t die from a fib. Good luck and hope you are feeling better soon.

Welcome . Afib diagnosis will always be unwelcome but at least you are vindicated in your knowledge that something was going on. It is infuriating to have one's concerns dismissed. Is there a reason that you are on statins? Other than that your cholesterol is over the magic number? There is no benefit to older women from statins and indeed recent large studies have found that women over 60 with higher cholesterol actually die less of all diseases including cardiovascular. If you have to take the statin you should supplement with Co Enzyme Q 10 as statins deplete the production of this . It is essential for providing our bodies and especially our muscles with energy.

Not everyone gets on with Bisoprolol. It is the most complained about drug on this forum. On 2.5 mg I felt pretty sluggish but not the complete zombie I was on 5mg. Doubling your dose has probably made things worse and if it is not preventing your afib attacks but impacting on your general wellbeing then it's time to think again. There are other meds . Some people get on better with other beta blockers- I changed to Nebivolol -and some cannot tolerate BBs at all but get on well with a calcium channel blocker.

Lastly the thyroid. UK thyroid management is pretty poor on the whole - it's not much better here in France though it is a lot easier go get to see an endocrinologist. If your thyroid meds are not optimised this will impact your heart. A few weeks ago someone posted a very interesting study done on the other side of the pond which showed that having low Free T 3 was as bad for afib as having high Free T 3. This goes completely against the dogma which leads to many hypothyroid patients being undertreated. If your thyroid treatment is not right that will make you feel very tired too. This forum is very good. There are lots of knowledgeable people here who have had afib for years . It has helped me a lot especially not to fear my afib so much. As a result I do not panic when I get an attack and my attacks have become less symtomatic.

It will pass and you will get used to your strange new world. I am of the same age and was also diagnosed after several years of “not feeling right”.

Everything you said in your post, I can relate to and I felt my world had ended. The combination of shock, lorry loads of “nasty” meds, trying to understand the condition, searching for triggers, establishing how to get help through the Covid NHS labyrinth….

lef me very frightened, angry and frustrated and that’s natural for a while at least, but gradually acceptance and being proactive will win.

I found the Arrythmia Association invaluable and have used their 24ht help line a few times. Sometimes you just need someone to really listen to you. My own GP told me that once I have been anticoagulated, everything else was ‘only’ quality of life issue and not a priority in the current Covid emergency.

You can also get in contact with the Arrhythmia nurse connected with the cardiology department you were diagnosed in. Mine has been wonderful and although you will need GP referral to see the consultant again, she can smooth the way and make appointments if you have difficulties with your GP.

Blood pressure monitor and Kardia have given me a lot of reassurance and I have now gone from constant checking (we all do it🤣) to only recording significant episodes for my records (with Kardia you can email the reading to yourself) so that if my condition worsens, I will be able to show the pattern and frequency and hopefully get faster access to further treatment.

I have lost a significant amount of weight and trialled gluten-free, lactose free, caffeine free, alcohol free …. fun free …. But I feel so much better for it. My AF is very strongly connected with digestive problems, so all these measures have helped.

I would say though, that constantly looking for triggers is not helpful as often there is no reason other than your electrics having a hiccup.

Meditatation and calming breathing exercises are wonderful. Have a look on NHS website for free apps. They will help you manage the panic and for me that fact that I have been able to even go to sleep while my heart is crawling out of my chest, has given me some power over this beast.

All Af sufferers are different and even your own episodes will vary. You will learn to trust your own judgement on the severity and know when to visit AnE, although I must say the prospect of a long wait and many stages before you actually get to see a consultant, makes the prospect of deep breathing in your own bed a very attractive option.

I have tried to concentrate on those things I no longer have to do rather than on those I can’t. If bending down to weed gives you heartburn and palpitations - then it’s time to leave the weeds alone or invest on some long-handled gardening tools.

It’s good to follow this forum for info and camaraderie, but it’s also good to keep it in perspective. Those who contribute tend to be either those who care enough to help others or those who are really struggling and/or had bad experiences, but there are many more AF patients who are probably just busily getting on with their lives. For every failed ablation there are many successful ones!

Thankyou I can't thank everyone enough. With each message I read the whole weight of misery is being lifted.This morning I even went out to do some tidying in the garden, not much, took stool with me sat down when needed to but that is fine now understand there is no shame in doing that.

Before I would attempt to do something start to struggle as bending seems to be trigger for me, get angry and push myself because I thought I was being pathetic. The result would be lying down rest of day so weak unable to breath with what felt like an express train trying to escape from my body.

But with all the information you amazing people have given me I am seeing life (not the one I would have chosen) as doable.

Thankyou again

I am a keen gardener but also find bending over difficult due to back issues as well. I get down on my hands and knees with a kneeling mat and find this much better as it doesn't squash up my stomach. I get less done these days but working outside in the fresh air , listening to birds sing and stopping to watch butterflies and other insects is good for the soul!

I have been under a various cardiologists for years that is the reason I feel so let down by all this.Whatever!! I'm here now.

(Had a good scream) Feel able to look forward now, All be it slowly.

It is like arriving at 'the old age' door to find it stiff and only able to open slightly.

Up to March this year, life before 65 consisted of being reasonably fit, working and a chirpy disposition.

Since March fell fractured my pelvis, been diagnosed with PAF.... diagnosed with eosinophilic asthma. (which also took years of misdiagnoses)

So Yes.. along the way, old age, health, and outlook on life are all hovering behind that jammed door, all have been put on hold.

I will continue to read up on this and strive to continue to live a normal life.

Thankyou for your advice.

It's troubling that it took so long for you to be diagnosed; I assume it's because your heart wasn't in the midst of an episode when you went to your doctor in the past. It should be better sailing for you from here on now. You're now diagnosed, and maybe your body is still adjusting to your new medications. I wish you well.

Watch out with vitamin D! I was prescribed high dose vitamin D and iron after a blood test showed anemia. Unfortunately, the doctor did no look at my high CRP. I had anemia of chronic inflammation, which is not low cellular iron, only the body hiding iron from serum because iron feeds bacteria. I wound up with terrible iron overload, causing serious magnesium deficiency. The only way to correct this was by blood donation, which I could not do because of anemia. It is a terribly long and complex story. Search for "too much vitamin D".

My experience was a bit different. My cardiologist long suspected I had afib but it never showed up on a Holter monitor or in-office EKG. Was on plavix, but thru a small clot and ended up with global transient amnesia for about 24 hours. EKG showed I was in afib and the clot probably was from blood pooling in my left atria. I have been lucky that my PCP and nurse practitioner are both women.

My wife keeps telling me that women are 8 times more likely to come away from a GP surgery with either the wrong diagnosis or no diagnosis. At least now you have been diagnosed. Now you have been diagnosed get all the knowledge you can from this site and ask questions, read the pamphlets and talk to us here.

I feel for you, I was diagnosed about 8 weeks ago. I am also taking Thyroxine, highest dose Bisoprolol and Apixaban. I was still symptomatic so gp prescribed Digoxin (small dose) to see if that will help, only started it couple days ago. I feel better in my self my anxiety was all over the place, it takes a while for the side effects of the Bisoprolol to stop, I am lucky I can work from home. I do get short of breath at times have to pace myself. I hope you will feel better very soon, chin up. You are not alone in this journey and it helps to read on here and ask questions. Hugs Take care and look after yourself.

Yes. As many here say. This is a wonderful forum. Good caring people with good advice. I can even feel that you are getting better by just reading what others have replied to you. Stick to this forum. It will always be here to listen and help. Take care and be safe. Hard times are still upon everyone with the pandemic.

So glad you finally have a diagnosis. I had AFib for 40 years along with other arrhythmia. Yes dear, things will get better emotionally and physically as time goes by. Your post caught my eye as my mother was born in Saltcoats in 1920 and is still going strong at 101 albeit she has had Afib for 15 years. Do take care and follow your cardiologists advice. I am Scottish but have lived for 25 years and retired in Singapore now. I am 77 with Prinzmetal / CAS

Wow!! Someone who knows Saltcoats what are the chances. Moved to England 30 years ago.

Thankyou for message

Hi Saltcoatslass, may be worthwhile checking your thyroid function and medication. There is a link between high levels of T4 (thyroxine) and AF. Some people need Liothyronine too in order to feel well. Bisoprolol doesn’t suit everyone, it made me feel that life wasn’t worth living, constant heavy feeling in chest, no energy, like a slow death. Medics didn’t have an effective response to this. Bit of a shortage of qualified medics in my area. Hope your experience is better. So I don’t take it - apart from anything else - it can cause arhythmia! I feel fine without it… good luck

Had thyroid checked seems fine. But folic acid was very low so have to take tablets for three months.

Was told that can effect energy levels.

After reading all the posts I am going to look into perhaps changing the Bisoprolol.

Thankyou

It’s so frustrating when they don’t listen. Folic acid gave me increased energy! The standard response I got was to continue taking bisoprolol to see if the adverse effects disappeared with time. PIL says it doesn’t suit everyone, but then also advises not to discontinue. The effects were so unpleasant that overruled any hesitation I had about not following the advice to continue taking. Good luck, hopefully you’ll find something that suits you. I’d be interested to hear the outcome.

I am in the US, and I really object to this post being so politically biased. I thought that this forum was free from politics.

Hi. You are on an emotional rollercoaster and it is mixture of the meds making you tired. Also the lifestyle changes take their toll. Once you have come to terms with the above you will learn to adjust accordingly. Everything your feeling is very normal. Xx

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