Help with newly diagnosed AF: Hi everyone, I... - AF Association

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Help with newly diagnosed AF

dinkyginger
dinkyginger

Hi everyone, I'm new here so please be gentle with me!

I was diagnosed with fast AF end of August, had had paroxysmal AF on and off for a while but always spontaneously reverted so didn't do anything about it.

I've been started on bisoprolol and rivaroxaban. Am now awaiting an electrocardiophysiologist referral and an echo, with a view to cardioversion. Unfortunately due to a hospital error the referral hasn't been made (it's being sorted now...don't get me started...!) In the meantime I've been admitted again with chest pain, shortness of breath and generally feel rubbish...light headed, shattered, "hot wired" like everything's running at 100mph and am very anxious...guess it's a chicken and the egg thing.

Basically i'm hoping someone can share their experience and tell me there's light at the end of the tunnel and I'm not going to spontaneously combust or always feel like this.

Thanks in anticipation of any words of wisdom!

38 Replies
oldestnewest

Hi

Your experience is much like my own. It takes time to get the drugs cocktail sorted, we are all different. I had two hospital admissions before it was sorted more or less. My permanent AF started 7 months ago, I've had two Cardioversions am still in AF.

Bottom line is that you need to be patient, it will probably take months to improve.

All the best

Colin

Hi Colin

Sorry to hear your cardioversion didn't work. Is there a limit to how many attempts they'll have?

Good to hear that with the right mix of drugs and time you can improve, thank you.

Some people have several Cardioversions. Success rate long term is not that great, my consultant reckons 50%. I am hoping for an ablation.

Meantime as long as you are on an anti coagulation treatment, the the risk of a stroke is minimized, and life carries on much as normal with a few constraints.

Many folk live normal lives and just manage their Afib.

All the best

Colin

Morning Dinkyginger, let me just say, speaking from my own experience, YES there is light at the end of the tunnel, and you won't always feel like this, the correct combination of either drugs and / or ablation will improve your quality of life but you may have to try more than a few to find the one that fits you best. You must keep pushing though.

If you are in hospital during an episode of AF, stand your ground and push to speak to the specialist, either cardiologist or better still the electrophysiologist, and you will hopefully either be admittied to Cardiology or they will come to speak to you. On one of my visits to A&E, after not converting for 3 days at home, I was admitted to the Cardiology. I didn't really want to be admitted but am glad I was as this moved me forward in the system. They can change your medication when your there or suggest ablation to improve your quality of life and you can use the fact your referrel was mixed up to push them.

I know its frightening, but this site is brilliant for support and please read as much of the information contained here as knowledge of AF will help you when dealing with the specialists. Ask anything on here. I hope you feel better soon and wish you all the best.

Hi, thank you for sharing your experience, it certainly sounds like getting admitted to the cardiology ward was key for you. I only went to the medical admissions unit and they said I'd be followed up by an ECP and have an Echo. Sadly that referral never happened so yes am using lots of time and energy in pushing it forward...sounds like ablation is the way to go, but I need to get "in the system" first!

Hi & Welcome

Your experience is not unusual. May I suggest, if you haven’t already, visiting the AFA site and read all that you can about AF, what it is and what the latest treatments and advice are.

heartrhythmalliance.org/afa...

I’m not clear from your description - are you saying that you have had paroxysmal AF for some time which has now become persistent? Many people find that persistent AF is easier to live with than PAF and many more live very well with permanent AF which is when you and your doctors decide that further treatments, which are mainly to improve QOL, will not be affective. If the cardioversion is successful, even for a very short time, reverting to NSR is possible so treatments will be discussed.

Bisoprolol is a beta blocker which will help reduce a fast HR and to some extent the symptoms of anxiety but people tolerate it very differently - for some it really helps whilst others find it increases breathlessness, induces extreme lethargy and fatigue to an unnacceptable level.

Good that you have the referral to the EP but may I suggest you enquire about the time-line as many people wait months for just a first appointment and the sooner the AF is treated the better. Many people ask for a private appointment and don’t get treated sooner but do get that first appointment usually in weeks rather than months and that in itself helps you manage the condition. There is a really good ‘Question to ask your Specialist’ on the AFA site - really good to go to your appointment prepared and informed and to be able to understand the jargon as knowledge is potential power.

We always try to treat newbies gently as we have all been where you are now so understand the anxiety and the fear of the unknown and how although AF is not life-threatening, it is life changing - but sometimes for the better!

Any questions - usually someone can answer or point you in the right direction.

If you just need to have a moan or express your fears - plenty here to help reassure and empathise.

Best wishes CD

dinkyginger
dinkyginger in reply to CDreamer

Hi CD

Thank you for your reply

I was admitted in fast AF....paroxysmal had been undiagnosed officially but i knew what it was (Mother has it) guess i'd buried my head in the sand (not good for an ex nurse!) It usually spontaneously corrected itself but I'd been rattling away for a week when I went to A/E

I was told I'd need current cardioversion so was put on the usual meds to prepare, however my referral slipped through the net and five weeks later instead of being a week away from possible treatment, nothing's happened, apart form alengthy dialogue with the hospital complaints department.

Meanwhile, still short of breath, HR and diastolic BP still in triple figures, and feeling hyper alert but shattered at the same time.

Thank you for your wise words, it's good to know you're all managing it, and that there's a good support mechanism on here.

Would echo what CD said, lifestyle is key, diet, stress, sleep, weight etc if you have any issues with those then tackling them makes the drugs/ablation far more likely to be successful !

Good luck

Andy

dinkyginger
dinkyginger in reply to Andyc934

Hi Andy

Thank you for replying...a good night's sleep would be good but I feel like I've just come in from a rave!

Ironically have recently lost over 4 stone and feel better and more energised than I've felt in years...got to 50 in May and "hello AF"

Is ablation usually a day case? Forgive my ignorance...not got to that page yet!

twishy
twishy in reply to dinkyginger

I too have lost 70 pounds... and feel great now.... and my cryoablation was a day case... i was home by evening. :-)

Welcome to this exclusive club! It's a scary time for you but lots of support here. Doctors can sometimes seem somewhat oblivious to the anxiety AF generates. As you say chicken and egg. You are in the best place but these days you may well have to fight your corner when you least feel like it. Hope a plan is soon in place. That really helps.

dinkyginger
dinkyginger in reply to Bagrat

Hi, thank you for the welcome!

yes exactly, a plan would be good, i do like a nice plan! Trying to push for a referral is tiring, and not good for the BP. Anxiety levels are high,I feel stuck in limbo at the moment...nothing's happening and I feel no better

I am fine after my cryo ablation 3 months ago..... was definitely worth having

dinkyginger
dinkyginger in reply to twishy

Hi, thank you for sharing.... I presume cryo ablation is freezing...? So does that mean you're effectively "cured" now and it can't come back?

CDreamer
CDreamer in reply to dinkyginger

No, unfortunately, it doesn’t work that way. Ablation can work for some people but for many it is a course if treatment. Usually includes an overnight stay - all information on the AFA site.

You will see posts of people who have had up to 8 - I think that was the record - but 2-3 are common. If your cardioversion works - that will be a good indicator that you are a good candidate for successful ablation but you will find that waiting lists are long.

You would be helping yourself if you looked at ways to manage your stress as a priority as you can get on a viscous downward spiral of anxiety increasing AF increasing anxiety. Breathing exercises, meditation, mindfulness, CBT, yoga - doesn’t really matter - whatever helps you but daily practice is important.

AF is a marathon rather than a sprint.

dinkyginger
dinkyginger in reply to CDreamer

Will look at stress management, thank you...am normally quite hyper anyway but am like a tightly coiled spring at the moment!

twishy
twishy in reply to dinkyginger

Hi again, i think once you are diagnosed with AF you have it for life, BUT my cryoablation has taken away all my symptoms, my heart now beats at a very normal 60 beats per minute... i now no longer have dizzy/fainting feelings and i feel 'cured' even though i know in some people the symptoms can return. I take no medication now and am just living life to the full :-)

twishy
twishy in reply to dinkyginger

Oh, and i forgot to say that i live in UK, and on NHS and had only one month to wait for my ablation at Liverpool Heart & Chest hospital which was amazing :-)

dinkyginger
dinkyginger in reply to twishy

Wow that was really speedy!

twishy
twishy in reply to dinkyginger

Yes it was, but i was very symptomatic.... lots of dizzy/feeling like i'm

going to faint spells, and with working full-time it was awful.... but i feel fantastic now :-)

Good morning dinky

Like you I am a new by to this site and to the joys of Af👎

This site is the place to be for help and advice. I too on Bisoprol and initial felt exhausted. For me I take 1.25 am and 1.26 at 7pm. That covers work and night. My experience is that it is very scary and causes much anxiety. Listen to Bob and others that understand. GP’s vary so push and be a pain!!

Rod

dinkyginger
dinkyginger in reply to 7164

Thanks Rod, yes I'm going to have to be pushy to get anywhere I can see that...trying not to get too wound up though as diastolic BP way too high anyway

Interesting you say Bisoprolol made you feel exhausted...I wasn't sure if it was that or the AF. I'm currently needing an afternoon nap I'm that tired!

Same with me diagnosed in August with irregular hr or AF - same drugs bisoprolol 10mg (felt dreadful) and rivaroxaban. 20mg Hr still in Af or irregular heartbeat mode even after meds???. Breathless walking up stairs. Still playing golf tho

My beef is if bisoprolol should slow hr down but echogramcardiologist technician keeps saying on 3 separate echo tests it is still in 125/130's?? Which means an inconclusive echo test! Seeing cardiologist weds for someclarity on my condition!!! Hasten to add but I do not feel my hr racing- apparently I'm not typically symptomatic of my condition??

dinkyginger
dinkyginger in reply to Nick1957

Hi, good luck with getting some answers on wednesday. It's good you don't feel your heart racing...apparently I'm very sensitive to rate change (story of my life..too sensitive!)

You're on twice as much bisoprolol as me...how does it make you feel, if you don't mind me asking?

Nick1957
Nick1957 in reply to dinkyginger

When I was on 10mg biseprolol I felt so tired - throat was swollen and I felt nausea/rough and couldn't sleep much! Felt full in the stomach bit breathlessness too so ate small portions. Trying to clear my throat all the time. Still played golf mind you ( and won) but legs and body fatigued quickly.

Kept waking up with reflux on top of my throat! When I reduced to 7.5mg biseprolol I felt much better so I put it down to the 10mg as opposed to 7.5mg. Yes can't feel my hr racing so not symptomatic which is a good thing. I hate taking beta blockers But will continue as directed. Hopefully if advised and diagnosed will get on to rhythm drugs. Hope your feeling better soon -

dinkyginger
dinkyginger in reply to Nick1957

Thank you for sharing Nick....interesting you say about tiring quickly and legs aching, I go along with that!

Nick1957
Nick1957 in reply to dinkyginger

Cardiac specialist appointment Wednesday - heart rate still AF too fast 160bpm. - additional meds on top of original meds biseprolol 7.5 mg and Riveraxaban 20mg

Also taking Diltiazem prolonged release 90mg x twice a day (rhythm drugs) ramipril 2.5mg and spironlactone 25mg. Already settled heart rate to 80bpm. Hope I've turned the corner or a corner

dinkyginger
dinkyginger in reply to Nick1957

Hi Nick

Sounds like your appointment was a fruitful one! Really good you're better controlled...you must feel better for that I'm sure.

I've finally managed to get a cardiology referral, via my GP.....classed as 'urgent' but who knows what that means, at least I'm "in the system" at last

Nick1957
Nick1957 in reply to dinkyginger

Good luck with your urgent appointment. - more controlled but taking lots of meds’ now! Waiting for mri scan and stress test in the next few weeks/months or so! In need of a large glass of red tho 😃look after your self. Let me know how you get on Nick

dinkyginger
dinkyginger in reply to Nick1957

Hi, hope you got chance to enjoy your glass of red over the weekend! I guess the extra meds are worth it if you're feeling better and more controlled...sounds like they've hit on the right mix for you.

Had a letter on Saturday to choose and book appointment for AF Clinic. Woo hoo I naively thought. First appointment available March 11th!!

Hoping to get to see Cardiologist waaay before then as I'm very symptomatic and therefore anxiety levels not good. Fingers crossed something positive will happen this week!

Take care

Nick1957
Nick1957 in reply to dinkyginger

No red wine being very sensible! I have a stinking cold but getting better- symptomatic for the cold tho 😜sore throat - coughing other than that ok! Try Headspace for anxiety -I'm sure you've tried alternatives Still waiting for my official letters for scans and tests. Be strong. Nick

You're not going to spontaneously combust and you will get through this. While it's scary at first, the key to getting through it is to learn all you can about this condition. Knowledge is power. Once you've educated yourself, you will realize it's not as bad as you may have first thought. We've all learned to live with afib and you will too!

dinkyginger
dinkyginger in reply to djmnet

Hi, thank you, yes I'm on a steep learning curve...got some good info from BHF too, and am finding my way round this site

I'd just like an hour off from feeling like I've had 27 cups of black coffee...some sleep would be good!

Hi Dinkyginger, don't be afraid , I'm not saying don't take care, don't be aware. But don't be adraid. The cardiologists have got your condition in hand now, the drugs have come a long way to control your heart. I was diagnosed in my early 50s and once the cardio had sorted out my medication and my bpm had settled down, I went off sailing with my then boyfriend (now husband ) I sailed from northern Florida to Trinidad via the Virgin Isles and Windward Islands. I'm just trying to tell you it's life as normal enjoy yourself, your cardiologist will have prescibed the right frugs to keep your heart under control. The cardioversion is not as vad as I know you're fearing. The cardio is with you along with the anaesthwtists, it's all routine for them and it's done before you know it.

good luck , be happy, we are okay , there are very clever doctors looking out for us

Annlynne

dinkyginger
dinkyginger in reply to annlynne

Hi, thank you for your reply, sounds like you're doing really well and living life to the full! Yours is an encouraging experience so thank you for sharing.

I've not actually been referred to a cardiologist due to a hospital error, and the drugs aren't controlling my rate or my BP. I was hoping to be cardioverted in a couple of weeks when I've been on the anticoaguant for 6 weeks, but without a referral that could be a long way off. Hopefully the referral will be done soon and I'll get my place in the que!

Hi, I guess with an ablation at least they're tackling the malfunction that caused you to go into AF in the first place....does that mean you're effectively free from AF now?

Currently I'd be keen to try anything, even if it was a temporary measure.

Hi there...l'm in permanent Afib and l just live with it.

I take am anticoagulant twice daily but that is all. I get

tired by the afternoon but l do most things quite easily.

I am reasonably fit but l don't worry about it. I'm 71 and

just take each day as it comes. Hope this helps.

Hi, thank you for your encouraging response!

I'm just 50 and aware of my heart racing away all the time, can feel it in my neck and head, then I feel faint, I know what you mean about getting tired...I work part time, luckily.

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