Recently diagnosed and struggling to cope

[Elladog]

Recently diagnosed with AFib and struggling with condition as doesn't seem to be much medical back up for me at moment with COVID situation. My GP is dealing with me via telephone consultations. Taking 1.25mg Bisoprolol in morning but having quite a few episodes late evening and through night/early morning. Any reassurance gladly accepted

[bantam12]

You could try taking your Bispoprolol at night, it works better for me doing that. It may also be that you need a higher dose.

[AussieHeart in reply to bantam12]

I’d like to thank you for this comment. I am on low dose Bisoprolol (1.25mg mornings) and by the afternoon I’m a mess. Sleep disturbance to boot so on reading your reply I thought I’d give it a try at night and for the past week things have been much better. Less fatigue to boot. This forum is great. Better than my EP who seems to offer no advice other than to say you have aFIB take this beta blocker and see you again never!

[Kayjas]

What I did on the advice of my doctor was to buy a blood pressure monitor like they use at the doctor's practice. I bought one on line for about 35 pound.You can then take your BP regularly and provide this info to your doctor on next telephone call. Make sure though to make a note of your pulse rate that is displayed on the BP monitor.

Also maybe there is a trigger for your AF. I know for me too much caffeine doesn't help.

Hope this helps.

[Hidden]

Hello Elladog and welcome to the forum. Dealing with any new diagnosis is not easy but even more so when you feel you are not getting the medical support you need. To try and put your mind at rest, once controlled, AF is not life threatening and the fact that you have been prescribed suggests that yours is. The next important thing to check is whether or not you have an increased risk of stroke and if so, you are prescribed an anticoagulant. This is done by checking your CHADs2VASC score (easiest way is to Google) and if you score 1 or more talk to your doctor about anticoagulants.

You should also ask your GP to refer you to see a cardiologist, preferably an Electrophysiologist (EP) who is a cardiologist who specialises in arrhythmias. This may take some time to happen, so if it’s possible, consider making a private appointment as this will help you to establish a treatment plan. I have added a link below which will help you to navigate through some of the AF Association webpages which you should find helpful. There are around 1.5 million folk with AF and the majority lead relatively normal lives but it can take a while to come to terms with the condition. I hope this helps to get you started……

healthunlocked.com/afassoci.........

[Ticktoc in reply to Hidden]

Have not seen Cardiologist ,EP or even GP since being diagnosd with AF Nov 2019 just put on Bisoprolol and Apixiban not even a med revue now having problems with NAFLD spoke to consultant once last Junesent for MRI lost weight dye to change of diet face to face app now been cancelled twice not even had repeat bloods done

[Hidden in reply to Ticktoc]

Sorry to hear that you are having these problems. All I can suggest is that you politely, but firmly seek help from your GP to get the help you need, best of luck……

[Tux18 in reply to Hidden]

Excellent advice from Flapjack. The diagnosis can be so frustrating. just know that some of us have lived with Afib off and on for years and have learned and managed. Can be so scary and perplexing but following advice of Flapjack and getting correct doctors will help. This forum has been a wonderful support for me. Best to you.

[Paul0208 in reply to Hidden]

So if a woman has AF you are saying they should be taking anti coagulants even if they have no other risk factors?

[Hidden in reply to Paul0208]

I don’t think I said that at all. Perhaps you should re-read my reply to Elladog……

[Paul0208 in reply to Hidden]

"This is done by checking your CHADs2VASC score (easiest way is to Google) and if you score 1 or more talk to your doctor about anticoagulants." I really don't want to sound rude, but surely by saying that you are saying that any woman with AF should talk to their GP about having anti coagulants? That seems excessive or am I not understanding

[Hidden in reply to Paul0208]

You are not being rude and you are entitled to your opinion but in my opinion, I’m saying no such thing. I am saying that ANYONE with AF should have a discussion with their doctor see if anticoagulants are appropriate…..

[pottypete1]

You shouldn’t have to cope with AF this way it is unacceptable in my view.

Contact your GP and demand, in the politest of ways, to be referred to a Cardiologist who specialises in Arrhythmia (an Electrophysiology [EP]).

Bisoprolol is only a rate control medication and an EP only can prescribe rhythm control medications.

In addition you need to be checked properly to establish if an ablation might be appropriate.

I realise that COVID-19 has changed things but “normal” medical care is back in many locations - you should not be given COVID-19 as an excuse for not being given the appropriate care.

Pete

[ETHEL103 in reply to pottypete1]

I agree with you totally. My GP has been brilliant and I had an urgent referral for cardiology. 10 month wait. GP was not impressed so referred me to another hospital 60 miles away. I had a call within 2 weeks and treatment ongoing. Covid affected all hospitals in Kent. I've had to have some private appointments just to get a plan going.

[CDreamer]

Hi Ella and welcome and so sorry you are suffering. Know that AF is horrible, anxiety provoking, sometimes disabling, certainly life changing - sometimes for the better, but very, very rarely life threatening.

Most of us have been were you are now and found a way through and hopefully we can help you find your way.

Ditto to PottyPete’s reply. Most surgeries and clinics have returned to normal functioning so COVID is no longer an excuse for poor care.

You may have to wait to see a specialist on the NHS but if Bisoprolol is not helping then you need more. Bisoprolol is always the 1st medication and one that GP’s can so do prescribe whereas other medications need specialist knowledge and experience to know when and who to prescribe.

Many people find that Bisoprolol is not only not helpful but actually makes them feel worse, certainly had that affect on me and is now contraindicated. There are quite a large section of people who positively shouldn’t take Bisoprolol including those with asthma and vagal induced AF.

Have you had a full work up re: bloods? If not ask you GP to do so and ensure you have a Thyroid Function test.

Has GP performed ECG and referred you for an Echocardiogram?

Information is potential power so may I suggest you research - start with the AFA website - look at the videos, consider attending Patient Day - I learned more in 1 day than in the previous 7 years - read the threads on this forum - ask any burning questions and usually someone, somewhere will be able to help.

Important question - have you been assessed for stroke risk? If not, this is the most important question to ask your GP and is calculated by a scoring system - which you can do for yourself - called CHADSVASC score. There is a link on the AFA website.

Best wishes CD

[Elladog in reply to CDreamer]

After going to the local A&E on two occasions they discharge me on Bisoprolol after undergoing all the usual tests. I'm so pleased I have found this Forum as it has been very helpful. Thanks everyone I have taken all the comments on board.

[Elephantlydia in reply to Elladog]

I believe you have been given excellent advice by all the people who commented on your question.Finding out as much as you can on Afib,empowers you.Well done for your question,and you have already started to help yourself.

[Howardl in reply to Elladog]

Hiwhat do you mean usual tests? If the a&e gave you Bisoprolol you should be under the hospital and they may send for you but like reported on the news you may have to wait a while. You must have had a ecg to be diagnosed with a abnormal heart rhythm. Have you had a Echocardiogram ? That sounds like your next step and maybe even a MRI for diagnoses

[Jfbould1 in reply to CDreamer]

Hi Ella, this group is excellent, so stay connected. Be proactive where you can and fight the inertia of “the system” through learning more about the ins and outs of this condition. You’ll be fine. I do have a f/u Q for CDreamer: how is it determined whether afib is vagal induced?

[CDreamer in reply to Jfbould1]

I found this article helpful richardbogle.com/blog/vagal...

Basically is your AF is triggered by posture, exercise, rest, food or drink repetitively then you need to consider it although many doctors will not recognise or accept it is a Autonomic Dysfunction Response.

You can have only vagal AF which if you do you can learn to avoid triggers and improve your vagal tone, you can have AF without any vagal response or you can have a mix of both. So many people whose AF always starts at night or whose AF disappears with exercise or is triggered by exercise - consider vagal AF.

[bassets]

Good advice as always from others here. I agree you shouldn't have to put up with this alone. I'm surprised you haven't had this dose split between night and morning as it sounds as though this is not reliable for you later in the day. You really need to get back to your GP and ask for more actions to be taken. Let us know how you're doing. Good luck and best wishes.

[Singwell]

I totally sympathise. I went this AF journey alone at first too - no support or information whatsoever - and this was before the pandemic. They give you your pills and off you go. I went into shock with my 2nd episode - I thought the pills would 'cure' it. Dig your heels in and get that cardio appointment in the diary. You can also directly call the hospital where you were seen and ask cardiology yourself if an appointment has been booked. It should have been. Do you have your hospital number and discharge notes? These are useful. You are in the right place to get information. It's a journey but as Flapjack says - many of us here are able to lead happy and stable lives by learning how to manage.

[Bonnie58]

Welcome Ella to the club, not necessarily one you would choose to join, a supportive one none the less.I agree with the other comments, you are on a low dose of Bisoprolol. Try again with your Gp, do you have an online patient access system?

I find it useful for repeat med ordering and you can ask a medical question that goes directly to your surgery if they are signed up to it.

Good luck with everything. Elaine.

[Suesouth]

Hi, I’m in similar position, diagnosed in April, hospital put me straight on Rivaroxoban, as I’m high risk for stroke, take BP tabs, then doc put me on bisaprolol 2.5 mg which was raised to 5mg a week later!,, does seem to work, but had AF attack on Thursday, beats up to 170! Waiting for results of 24 hour monitor, then having ultrasound on 9th, otherwise no contact with docs! Paramedic said I might need ablation, but till I get results, I don’t know!

[Nerja2012]

Ella . A lot of us have been in the same boat as you. I was diagnosed in A E six years ago with PAF and referred to my GP , never saw a Cardiologist . Felt like I'd been shoved out the door but with the help from people on this forum I have gained a lot of knowledge and confidence. I think my hardest part when diagnosed was acceptance of the condition. My GP is useless but its my AF not there's so I make sure NOW that they listen to me. Covid or not . Follow the advice on this forum . They know what they are talking about. You will be fine. You'll see.

[Jetcat]

Hi and Elladog and welcome. Your in the rite place for any advice and help. Some folk find recently diagnosed afib very frightening and worrying I know I did. But it’s early days yet and your GP will probably start you on low doses then maybe increasing medication or trying others until you start to feel better. In the mean time it would also be a good idea to ask GP to refer you to a EP as these people specialise in rhythm disturbances. I could go on but I would only be repeating what others on here have said . But The help, advice, information and reassurance Iv received from these folk on here has been amazing and I’m sure you’ll find it the same as time goes on. I know it’s easy for me to say but try not to worry too much. Our afib is a pain in the butt sometimes frightening, but it’s not guna kill us. Let us know how you’re getting on. take care. x

[secondtry]

If you can afford it (around £250) get referred to a cardiologist, pre Covid waiting time was less than 2 weeks in the Surrey area. I found getting on with it reduced my anxiety. In the meantime, read up here and elsewhere as much as you can and then prepare a list of your top 5 questions for your appointment.

[tabletphobic in reply to secondtry]

I'm feeling a tad bitter now, what if you can't afford £250 and does anyone know why you have to ask to see a EP, why isn't it automatically done with heart rhythm problems

[Hidden in reply to tabletphobic]

As someone else has said an EP is an electrophysiologist and deals with electrical problems in the heart which ours is - an intermittent electrical fault and you know what a pain they are in domestic appliances! I had to go privately and thus got introduced to flecainide and the Kardia (and a smarter phone to use the app on) . It has been a great help. The other cardiologists deal with the plumbing problems like stuff building up in arteries etc- and yet weirdly, in our area they are the only ones you get to see at “atrial fibrillation services” which is fairly crazy! Almost 4 years after my diagnosis I finallt heard from an NHS EP but he doesn’t propose to call again for six months or so!! Good luck on your quest to find what works for you and medics to help!

[Millview]

Hi EllaI am recently diagnosed with AF 8weeks ago , was getting as people describe AF episodes(palpitations,feeling very unwell,low mood)while still on prescribed medication,it has taken me until this week to start feeling more like myself , and quite a few changes of medication,I am not a anxious person but have felt very unwell,

GP can help to a certain extent but a cardiologist referral is needed to get the AF under control

Hope this helps I thought I was never going to improve!!

[Windlepoons]

I'm sorry to hear that. Mine started April 2016 well before covid and it was over 2 years before I saw a cardiologist. Then another year before anyone else saw me. I had to request to be transferred to another hospital group. Please don't just wait if you need help. Nag. When I finally got transferred my case fell into a black hole and I wasn't on the ablation list as advised. Five years now with AF and my first ablation was cancelled because of other emergencies and the next one cancelled because I am now anemic. However no one actually told me until I turned up for my procedure. I even rand that morning and asked the cardiac nurse if it was still on and they said yes! Now off the list. My experience has taught me not to sit back and assume you are on appointment lists etc. If you need help ask and keep asking. I think a lot of us are lacking in support and advice at the beginning but this forum is an excellent advice tool. I've learned a lot. Best of luck.

[Walkingballer]

Hi. I got diagnosed and treated by a locum GP. Felt really ill still so paid private to self refer to cardiologist a week later. Proper care and felt so much safer. Changed my whole drug regime because he had expertise.Just see a specialist and pay if you have to. I have now had a cardioversion and am back in rhythm. Had a cardiac MRI today so will await results. Best money I ever spent. No health = no wealth.

[Magson]

For me, it's not good enough. Contact you GP and firmly request a referral to a Cardiologist. Only then will you progress. If you don't get any joy from your GP walk into A and E . You need proper treatment and a path forwards. I could make some comments on here about GP surgeries not seeing patients but I would get into trouble.

[Hidden]

Sadly, there wasn’t much well before the pandemic - I was finally diagnosed getting on for four years ago. This forum is a great support though the main thing we have learnt is that we are all different though doctors have a tendency to treat everyone the same!! Do hope you get to feel more in control and get some more helpful replies.

[Mike-tyson]

Think you need to up the Bisoprolol to twice per day. I am taking 5mg twice per day It has side effects like going a bit dizzy if I stand up quick but calmed my heart beat down and bought my heart rate down to around 70 Bpm

[purpleswimmer]

Hi. I was diagnosed with heart failure and permanent a fib January 2020. For the remainder of that year I was convinced my life was never going to be the same and I felt ill every time it flared. I was extremely depressed and emotional most of the time. During this time the cardio nurse and cardiologist kept changing and increasing doses of meds. I am still pretty tired with the doses of digoxin and bisoprolol I take but have only had a couple of minor a fib episodes since December 2020 and although I have had to change a great deal of my previously rudely healthy lifestyle, ie swimming every week day, aquafit x twice a week, pilates x twice a week and lots of walking, I am now in a pretty good place. Keep talking to GP and ask to be referred to a cardiologist and you will get the right meds eventually. Good luck on your journey. Xx