"Slave to the rhythm" - again!

[amyrosie]

I have been in persistent AF since 28th Feb, having had to come off Amiodarone (which worked well at controlling my AF but the side effects of the over active thyroid made me feel really ill). I referred myself back to an EP I had seen once previously as is hopeless trying to see someone on the NHS at the moment and he changed my medication to Sotalol. This has ceased to work if it ever did, as I think it may have been the residual Amiodarone that kept my rhythm stready until Feb. My EP referred me back to the NHS for Echocardiogram and Halter monitor. These results have just confirmed a significantly dilated left atrium (which I knew about) and moderately leaky mitral valve. I was surprised to hear the latter. The monitor confirmed persistent AF with HBs of 63 and 130. I have not seen my NHS Cardiologist for 14 months, but he sent the results to my GP. He has recommended increasing my Ramipril to 5mg a day. I am already on the maximum dose of 5mg twice a day of Bisoprolol and also Xarelto. He is also introducing Digoxin 125 into the mix - another scary drug??! I was due to see my Cardiologist for annual follow up in May but I rang his secretary and his appt lists are closed at the moment because of a backlog. My main symptoms are tiredness and breathlessness on any exertion and the awareness of a v. bumpy heartbeat. (and of course living with the constant anxiety) The letter from the Cardiologist (I got my GP to print me a copy) states I am likely to remain in persistent AF. I have read posts on here by others who seem to be coping quite well in this state. At least, you don't have the constant worry about going in and out of AF. My question to the group is how people in persistent AF ARE coping???? Also I would like to hear from anyone who is taking Digoxin. I had the Amiodarone in the drawer for 2 months before plucking up the courage to take it and the side effects of this drug don't make for happy reading either Also, what is the prognosis for me now? Am headed towards inevitable heart failure? Some days I still feel quite good but others totally exhausted and breathless and just want to sleep. I think the bisoprolol may not be helping with side effects as well. I still get out and about and manage to walk my three lhasa apsos (slowly). I live in Wales. Hills!!!! The EP mentioned a possible ablation, but said it was dependant on how enlarged the left atrium was, so this may be off the cards now.

[Hidden]

I was the same, no attacks, AF all the time. I got used to it as I’m sure you have .... every so often I’d go to bed thinking about it and panicking but mainly I just got on with things. I was breathless yes and mostly had a headache. My heartbeat was always high.

I look back at that time and wondered how I didn’t flip out! It was horrible.... but you do get used to it.

I changed my lifestyle completely and my diet. Gave up alcohol and caffeine.

Made no difference while in AF.

I had a cardioversion 6 months ago and have been in NSR ever since. I think the changes I made while in AF have helped me stay in rhythm since.

I still take all the drugs. Ramipril, Apixaban and Bisoprolol.

No chance of a CV for you or Ablation? Can you not jump the queue by going in via A&E and getting to see a cardiologist? Just a thought.

[amyrosie in reply to Hidden]

Thank you very much for replying. Because I have been in AF for 6 months now, I am wondering if it can ever be reverted back to NSR. The Cardiologists letter says "it is likely she is going to remain in persistent atrial fibrillation". How long were you in persistent AF before you had you cardioversion and went back to NSR?? I have been to A&E three times when me heart rate when 'beserk' but was not referred on. Just stayed in a few hours until it came down a bit then sent home. I do hope your NSR continues. I can't imagine what it would feel like now not to be in this bumpy state. Also my enlarged left atrium may not help in my case fro CV/future ablation.

[Hidden in reply to amyrosie]

I was in persistant AF for at least 6 months, due to firstly misdiagnosis by my GP and then as I had been in AF for more than 3 months I had to be on a NOAC before they would cardiovert me.

My AF HR was 195+ and I also had an enlarged atrium because of this.

I was on 12.5mg Bisoprolol + digoxin before my cardioversion to try and help my knackered heart.

Thankfully the CV worked and in 6 months (with the help of Amiodorone) I stayed in NSR and my heart returned to normal size.

I had to stop the amiodorone as it damaged my thyroid and a few months later I returned to AF.

I had several more cardioversions by DCC or Flecanide and finally an ablation 2.5 years ago.

Is another cardioversion on the cards? It might give your heart a bit of time to heal, and then an ablation?

All the best

[amyrosie in reply to Hidden]

Thanks Mikee. It gives me some hope that a CV worked after 6 months of being in persistent AF. Looks as if we went down the same route with the Amiodarone. It also worked fine for 2 years for me, totally controlling the AF, but then the horrid symptoms on the overactive thyroid started and I was heading towards dangerously high 'thyroid' levels so had to come off it. I have not had a CV yet. I was going to have one but had reverted to NSR by the time the appt came, 6 weeks after starting the Amiodarone. Pity about those side effects - it worked so well!! Great to hear that your heart returned to normal size as well, but I expect it depends how enlarged it is.All the best to you. -

[Hidden in reply to amyrosie]

I was 6 months persistent AF before CV and no Echocardiogram so they didn’t even know what my heart looked like....

[CDreamer]

Hi amyrosie - so sorry about your troubles. Wales does seem to be very under resourced for Cardiac and EP services and that seems an impossible situation for people in Wales to tolerate and to be in.

‘Likely to remain in persistent AF’ is not permanent AF - which means all treatments have failed. I think in your position I would push harder for more information and for access to specialist treatment - for which you will probably have to travel to England.

Unfortunately I think you need to ask a specialist about your prognosis as no-one on the forum would be able to advise you as we aren’t medics and we don’t have your medical history but from what I understand, heart failure is not inevitable and dependant on various factors. Did they give you your Ejection Fraction? That is the number which indicates heart failure.

I think it may be also worth asking for more detail about the Digoxin and why it was prescribed because like everything else - the decisions for QOL are made on asking - Would I be better with it than without it? Will the benefits outweigh the risks? From what I understand if you can get back into NSR then the atria does have a chance of returning to normal size.

The stress and anxiety are also one of the biggest factors for exacerbating the problem so what are you doing to reduce those? There are many things that really, really help so I would encourage you to look at what you could do, if you aren’t already, such as relaxation techniques, yoga - doesn’t have to be contorting yourself as yoga can be done sitting in a chair - gentle movement exercises such as Tai Chi, Meditation - lots of various forms, Mindfulness and CBT and CBTMindfulness which is a combination and helps many. Personally I use daily Calm and energy medicine routines which have helped me enormously.

Best wishes CD

[amyrosie in reply to CDreamer]

Thank you CDreamer. I was not given an ejection fraction. The letter from the NHS Cardiologist to my GP just says "Her mitral valve is moderately regurgitant' which is the first I have heard of having any leaky valve problems. The previous letter from the EP I referred myself to privately states 'I am not in heart failure'. I have tried mindfulness and can't really 'empty my mind enough'. I prefer gardening which totally absords me, walking in the countryside, listening to music and just taking it easy and avoiding stress. My main stress is worrying about this condition but I do try and just ignore it as much as I can and have had many useful tips from here - breathing techniques, wearing comfy clothes and shoes (Jean) and drinking plenty of water - when I remember.

[CDreamer in reply to amyrosie]

I find gardening very therapeutic and absorbing as well. Anything that gives you pleasure but I can totally understand your frustration with lack of explanation, support and treatment options. I don’t think the doctor’s understand just how stressful just going to see them is.

All the best.