Third episode of persistent AF in 6 months

[Norfolk_spaniel]

I had a successful cardioversion on Christmas eve and then another one just 4 weeks ago. Gutted because I went into persistent AF again yesterday. I take Edoxaban and have tried to take Flecainide but it makes me dizzy and very sick. I tried the "pill in pocket " yesterday but it did not work.

I think it is being triggered by hot flushes. I had breast cancer 6 months ago and had to have a mastectomy and come off HRT. Thankfully, no further treatment is required. Since then, I get a feeling of anxiety,my heart races and then I get the hot flush. This happens ten times a day or more. My GP says there is nothing she can give me because of the breast cancer and I've tried every herbal remedy. I also get little sleep.

I feel so ill with the AF, I have no energy,no appetite and struggle to even shower. I have been an active person,long dog walks and lots of travel but currently I can't do anything. Where do I go from here?

[Jalia]

Have you seen an EP...electro physiologist ? They are the AF specialists. If not then I would have thought that he/she should be your next step. If necessary and you are able I would arrange a private consultation ( £250/£300?). It would save a long wait and be very helpful.

[Norfolk_spaniel in reply to Jalia]

Thanks for the reply. It was the EP specialist who did my last cardioversion in between his ablation work. I have an appointment with him end of September. Nearest private consultant is 60 miles away and private ablation is £12500 which i just cannot afford.

[Jalia in reply to Norfolk_spaniel]

I think you need very deep pockets to self fund a private ablation without insurance as you may need several !!

It's sounds awful for you but Jean has given some useful advice. I'm thinking of getting help with sleeping as well as I haven't been able to get more than 2 hours sleep at a time since an operation 5 months ago. I hope the thyroid business can be looked at as well, assuming it hasn't already.

[Hidden]

Could you let us know who arranged for you to have the recent cardioversion….

[jeanjeannie50]

If you are having periods of anxiety, then I can understand that making your heart race. I get anxious in the night if I hear a noise and my goodness my heart takes off racing! How about asking your GP if you can have a pill to help you sleep through the night? Having a good nights sleep can make you feel so much better.

I have been where you are and blamed my lack of energy on my AF, but it was discovered that I had an underactive thyroid, taking pills to right that has given me back my life. Have you had a thyroid test recently?

Really feel for you.

Jean

[mjames1]

Sorry you're not feeling well. Are you still taking Soltalol (or any beta blocker) along with the Flecainide? Some of the side effects could be from the Soltalol as it has beta blocker properties and you mentioned that because of your asthma one of your doctors advised against beta blockers. If so, you might want to ask your doctor about stopping the Soltalol and using Flecainide alone with Diltiazem, which is not a beta blocker. This should be discussed preferably with an ep.

Jim

[MummyLuv]

I am assuming you are in Norfolk from your forum name 💕. You may need to wait until all is healed from your breast cancer if you had surgery but it may be worth seeing a cardio thoracic surgeon (ask for a referral on the NHS) about whether a mini maze would be right for you. It has high success rates for persistent afib. Have a look at my posts and the recent posts by 4chickens and happy to answer any questions by PM.

[Buffafly]

Not persistent yet if only started yesterday so hopefully it won’t last too long. I’m on my 7th day of AF so officially ‘persistent’ but as it is slow AF I’ve got no hope of a cardioversion anytime soon. It is very frustrating I know, I used to spend hours in the garden but now it’s a jungle and a bit of light pruning on a hot day set me off.

Are you taking anything to reduce your heart rate? I’m assuming it must be quite high? And (forgive me if I’m telling you what you already know) are you taking the Flecainide correctly? I’ve never had it but I believe it needs to be taken on an empty stomach some time before food (hope someone else will say how long) to avoid sickness etc and to work effectively.

Best wishes ❤️‍🩹

[irene75359]

I really feel for you, constant hot flushes are bad enough without going into AF to boot. I had the same when my old GP took me off HRT abruptly once I reached a certain age but I didn't have AF then. I am really sorry the flecainide isn't working, how much are you taking? When I use flecainide as a PiP I lie very still and wait and wait until I go back into NSR. That doesn't help you if you are feeling sick as well, as the others have said it's better on an empty stomach. Failing that, there are other drugs your EP could try. Do you have an arrhythmia nurse you can ring? I do hope you get something sorted out to help you.

[Norfolk_spaniel in reply to irene75359]

Thanks for your lovely reply. I tried to take flecainide after my last successful cardioversion, persevered for over a week, but I suffered with awful nausea and dizziness. Depite this, I tried PiP on Sunday but it didn't work. I hadn't been told anything about taking it on an empty stomach or lying still afterwards. Rang the arrhythmia nurse yesterday who said he would speak to my EP consultant but still waiting to hear. Today I feel so breathless and sick that I have rung 111 and currently waiting for the paramedics as I feel too ill to endre A&E. There must be something that can be done to give me my active life back.

[MummyLuv in reply to Norfolk_spaniel]

So sorry to read you are off to A&E. Afib is a total monster!!

[irene75359 in reply to Norfolk_spaniel]

I do hope they managed to do something for you - please let us know how you are.